https://t6talk.com/home daily 1.0 2026-01-22 https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/1628100909958-ND37MS5S0UHDJLOBUO18/Wallace+and+Melanie+BC.jpg Home - Let’s Keep the Conversation Going Welcome to t6talk! Let’s dispel disability myths, illuminate truths and share as a community… Although we started as a resource for the spinal cord injury (SCI) community, our continual networking has led us into the disability community beyond SCI… An opportunity for us to learn and grow. We know the Power of Peer. When we share resources, personal stories and our experiences, we are inviting others to join in. Although we are located in southwestern Ontario, we want to connect with disability community inside and outside of Canada. We are reaching out to you for your input! As a contributor you can help support and educate others.. We believe it is imperative to populate this space with a variety of voices.. Divergent thinking builds strength and unity within a community. We want to hear from BIPOC and LGBTQ2+ voices. "Diversity is being invited to the party; inclusion is being asked to dance" Verna Myers We look forward to talking with YOU… Wallace (he/him) & Melanie (she/her) https://t6talk.com/contactus daily 0.75 2026-01-15 https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/1612829515937-PI1F0PEUQ3VOXEZ88YCV/Randy+Upper+and+Melanie+Earle+Car+Date.jpg Contact Us - Email us at t6talk@gmail.com or fill out the form on this page … we would love to hear from you! https://t6talk.com/aboutus daily 0.75 2025-12-12 https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/1613687531577-SM90XCWOUXYXRZ0ROXNG/Randy+Upper+and+Melanie+Earle+Lake+Ontario.jpg About Us - About Us Wallace H Earle (formerly, Randy Upper) has a Master of Social Work degree and is a Registered Social Worker. He is currently working with Sherry Maxwell and Associates Counselling Services, providing virtual therapy and supporting people in the disability community and those who have experienced trauma. As a person with a t6 complete spinal cord injury (SCI) and mild traumatic brain injury (mTBI), Wallace lives his life to the fullest. He sustained his injuries in 1988 at the age of 20. Although the event changed the trajectory of his life, he would argue that it was for the better. After the accident, Wallace learned that he had an undiagnosed learning disability. This knowledge enabled him to get the supports needed to be successful in school. He would also admit that aging with a spinal cord injury is a real kick in the pants. But he’s up for the challenge. Melanie Earle has a Bachelor of Arts… with a focus on English and Gender Studies. From an early age, she has been interested in topics of social justice. For a time, she supported herself and her daughter by working as a Human Resources Professional. When she and Wallace united as a team, she was able to focus on her passion for working with people and making connections, centring people whose voices are often silenced or dismissed. As a person with an invisible disability, Melanie also lives her life to the fullest. She would also argue that her disability has positively shaped her life and its path (forks, bumps and pits included), and has led her to here – exactly where she wants to be. Together, this interabled couple are using their knowledge, skills, and experience to keep the conversation going with their peers in the disability community. There is a vast amount of untapped peer knowledge and experience out there. They would like to gather and share these resources as a means of serving those within the disability community. They also firmly believe that every Saturday night should be a wild karaoke party, sharing snacks and good cheer with others. They live in southwestern Ontario, Canada, but they spend as much time travelling across the country as they can, so they can connect with others. To dispel myths, illuminate truths and share as a community, Wallace and Melanie also need to acknowledge the privilege they have as settlers of European descent. They are committed to learning more, including how they can acknowledge land rights in a meaningful way, and how they can establish and further an anti-racist mandate through intentional intersectional inclusion of various lived experiences. They both recognize that to learn and grow, they must watch for and address the biases they have internalized. This includes, but is not limited to race, disability, class, gender identity, and sexual orientation. They acknowledge that their personal experience in these areas is narrow but are committed to widening their lens by intentionally seeking other points of view. https://t6talk.com/sports-and-leisure daily 0.75 2023-10-04 https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/6756d09b-c511-4ac9-9e9e-e6623317f96f/Sports+and+Leisure_Exercising+Options+for+Cardio+Workout+Equipment.jpg Sports and Leisure - SCIBC Article: Exercising Options for Cardio Workout Equipment Melanie: I came across this article and thought it would be a good one to share. Arm ergometers have been the most common piece of exercise equipment for people with a spinal cord injury. This article goes on to discuss the rowing machines and ski devices that are now available, providing more options for people to bring variety to their workouts. If you have anything to share on this page, or any other, please let us know. https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/1630607041565-ZL5Z08QJ3W2NGDDNS2U9/Why+Accessibility+in+Sports+is+Important+-+Spencer+West.jpg Sports and Leisure - Why Accessibility in Sports is Important Melanie: My lovely sister Mary-Beth sent me an article on Spencer West and I was intrigued, so I looked him up. I watched a bunch of his videos. This one really stood out to me. Not everyone is an athlete, but sports can play an important part in our lives. When we are excluded, it can have a lasting impact on our sense of self and how we interact with others. Spencer wrote "Today I wanted to chat about my complicated relationship with sports. Why I feel that way, what sports I love and they this should matter to you too and why accessibility in sports is so important." See video link at the bottom. You can also check out his other videos HERE. STOP! If you know educators... pass this on! In addition to this great video, Spencer talks about the Move United Playbook (check them out HERE). "Move United, the national leader in community adaptive sports, is bringing increased awareness to the power of sport for people with disabilities by launching a new Inclusive Playbook, designed to educate youth on disability awareness and adaptive sports. This first of its kind workbook invites American youth to join a conversation about the value equal opportunity to participate in sports and recreation in their schools and communities brings to athletes of all abilities." This is great toolkit! We can know the importance of inclusion, but sometimes we need some help on how to make that happen. If anyone knows of a Canadian equivalent, please let us know. https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/1621363458939-DR9Q8OC7M95RO5FW42JD/ATP+and+MM.jpg Sports and Leisure - Yoga Melanie: I love yoga. The practice has helped me out both physically and mentally and it is usually how I start my day. For me, it’s all about the teacher… the messenger… I need to feel a connection. My favourite yogi is Adriene Mishler (click on her name to go to her YouTube page). When her team reached out to her subscribers this year requesting feedback, I asked about featuring a yoga instructor who teaches from a wheelchair. Adriene features other yogis, so I am hoping she will find the time to make this addition. My goal is to find a yogi Wallace can connect with so that we can practice together. We will keep you posted. Luckily… the kind folks at SCIO pointed me in the right direction… I have added two links below. Ben Clark’s channel “Adapt to Perform” and Mary-Jo Fetterly’s channel “Mindful Moments”. It was also important to me to find free content so that membership fees were not a barrier. If you have a yogi you love, please let us know so we can add them to this page. https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/1613687213812-LZWAJ2M16VXM9Y4N0IPF/World+Cycling+Championships+Randy+Upper.jpge.jpg Sports and Leisure - Hand Cycling Wallace: This is me competing at the 2002 World Cycling Championships in Germany. I retired from competitive racing shortly after this race. Beyond the thrill of competition, racing provided me with the chance to travel independently with only my backpack and my bike in a box. I have found this sport to be the best way for me to get a good cardio workout. Due to shoulder issues, I have been away from this activity for a while. After a successful surgery in 2019, I purchased a new bike and I am currently training on my table top hand crank. I am looking forward to getting back on the road this summer. https://t6talk.com/miscellaneous daily 0.75 2022-05-09 https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/537a064e-cf2d-4f74-8761-f536bef73bd2/Misc_YOOCAN.jpg Miscellaneous - YOOCAN Melanie: Check out this organization. There is A LOT here. The power of community and the power of peers. By sharing we can make meaningful connections. If there is an organization or individual you think we should post about, let us know! YOOCAN: What is YOOCAN? We believe that shared experiences and knowledge from around the world can inspire people with disabilities and change their lives, so no one feels alone. With thousands of yoocan community members making daily connections, finding new friendships and relevant solutions, we are the world’s #1 collaborative community for sharing experiences and knowledge for and by people with disabilities. https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/9bb332a7-b0f2-4c64-bfee-7fa0a1a1bda6/Misc_DSQ_Six+Ways+of+Looking+at+Crip+Time.jpg Miscellaneous - Disability Studies Quarterly "6 Ways of Looking at Crip Time", by Ellen Samuels Melanie: A powerful reflection. Ellen shares her experience with "Crip Time". Ellen Samuels: When disabled folks talk about crip time, sometimes we just mean that we're late all the time—maybe because we need more sleep than nondisabled people, maybe because the accessible gate in the train station was locked. But other times, when we talk about crip time, we mean something more beautiful and forgiving. Ellen's Bio: Ellen Samuels is a disability writer and scholar and Associate Professor of Gender & Women’s Studies and English at the University of Wisconsin at Madison. Her books include Fantasies of Identification: Disability, Gender, Race (NYU Press, 2014) and a forthcoming poetry collection Hypermobilities (The Operating System, 2021). Her critical and creative writing appears in dozens of journals and anthologies, including Signs, GLQ, South Atlantic Quarterly, Disability Studies Quarterly, Disability Visibility, Brevity, Copper Nickel, Mid-American Review, and Journal of the American Medical Association. She has received the Catherine Stimpson Prize for Outstanding Feminist Scholarship and two Lambda Literary Awards. She lives in Madison, WI with her partner, son, and dog. https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/1cd5b4a6-911e-4109-b764-74deac8bcddd/Youre+Dead+to+Me+-+Disability+in+the+Ancient+World.jpg Miscellaneous - Disability in the Ancient World BBC Sounds Podcast: You're Dead To Me, Episode: Disability in the Ancient World (Released October 29th, 2021) Melanie: My sister Meagan listens to a number of very interesting podcasts. She listened to this one recently and passed it along to me. I thought it was very informative and very funny (thanks to the comedic stylings of Rosie Jones). If you have any podcasts you'd like to share, please let us know. Description: Greg Jenner is joined by comedian Rosie Jones and historian Dr Jane Draycott to discuss stories of disability from over a thousand years of history, including people with disabilities excelling on the battlefield and others with very well-dressed guide dogs. Melanie: At the beginning of the episode, Dr Jane Draycott clarifies the language she uses by stating "...the World Health Organization's differentiation between the terms impairment and disability, where impairment designates the condition and disability designates the consequences for the individual...". This could lead to a great conversation! Wallace talks about disability being a societal construct. He believes that disability is not an inherent quality of the individual, but rather the result of the environment one might find themselves in. For example, his use of a wheelchair only become a disability when physical barriers prevent access. Want to have a discussion about this? Let us know. https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/1627496207853-F483JOV20ZZEWCVIANXB/Rick+Hansen.jpg Miscellaneous - How to solve a problem like accessible parking misuse Wallace & Melanie: It can be frustrating finding an accessible parking spot. Even more frustrating when we see people walking, jogging, or running and hopping into a car parked in an accessible space - especially when there are standard parking spots right beside the accessible parking spots. Rick Hansen wrote a great article on this (see link below). All you have to do is park in a parking lot and watch how the accessible spots are used or misused. This includes being the designated spot to plow snow into in the winter. It would be great to have different symbols on permits that would then match up with different signage. Accessible Signage #1 for Standard Width Parking Spots: when someone’s accessibility needs means needing a parking space close to a door and a standard width space is adequate because they do not use accessibility devices requiring a wide parking spot. Accessible Signage #2 for Wide Width Parking Spots: when someone’s accessibility needs means needing a wide parking spot to accommodate ramps and to ensure doors can be opened fully for mobility devices like walkers and wheelchairs. Having some close to an entrance is good, but more could be put throughout the parking lot. So would two styles suffice? Standard width spots for people who need to be close to the door and wide width spaces for those using mobility devices? What do you think? It’s important for us to be responsible with our parking permits. If someone has a temporary permit, they should stop using it when they no longer physically need it, not when it expires. Only use an accessible parking spot when you NEED to. If I am not getting out of my car, I park in a standard spot while Melanie runs into a store, leaving the accessible spot free for someone who NEEDS it. https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/1623176977136-TFXNV9KLOSO8T2RCQCMY/Rogers+Connected+for+Success.jpg Miscellaneous - Rogers “Connected for Success” Melanie: The SCIO webinars are are good source of information. During the March Peer Town Hall they referenced a social responsibility initiative that Rogers has implemented called “Connected for Success”. Their site reads “Connected for Success offers high-speed, low-cost internet across Ontario, New Brunswick and Newfoundland to subsidized tenants, seniors, families with children and to individuals receiving disability and income support.” This program is limited to those who are tenants of a non-profit housing partner organization, or recipients of Ontario Disabilities Support Program (ODSP), Ontario Works (OW), Guaranteed Income Supplement (GIS) or a recipient of the maximum child care benefit. For more information, visit their site. https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/1622153382577-4YES37UNWHXHSWEKQKK4/Crip+Camp.jpg Miscellaneous - Crip Camp Wallace & Melanie: We love this documentary. Period. “In the early 1970s, teenagers with disabilities faced a future shaped by isolation, discrimination and institutionalization. Camp Jened, a ramshackle camp “for the handicapped” in the Catskills, exploded those confines. Jened was their freewheeling Utopia, a place with summertime sports, smoking and makeout sessions awaiting everyone, and campers who felt fulfilled as human beings. Their bonds endured as they migrated West to Berkeley, California — a promised land for a growing and diverse disability community — where friends from Camp Jened realized that disruption and unity might secure life-changing accessibility for millions.” Netflix https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/1621361323873-2U4YEUGAWVKS2SUOURPW/ATP+-+Life+Advice+from+Disabled+People.jpg Miscellaneous - Life Advice from Disabled People Melanie: In my search for yoga instructors who use a wheelchair, the brilliant folks at SCIO pointed me towards Ben Clark from Adapt to Perform (ATP). While checking out the vast number of free videos available on their YouTube channel, I came across this video. I enjoyed it and thought I should pass it on. I have also added ATP to our Sports and Leisure page. https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/1619038470296-S8PY18GTQQZ90VH74E5T/Tetra+Society+of+North+America.jpg Miscellaneous - Tetra Society Melanie: I took part in a SCIO Peer Connection workshop today (4/21/21) and it was amazing! Unfortunately I was late arriving so I missed the first 15 minutes. SCIO are hosting another event with them next week (4/28/21) and I have signed up so I can catch the first bit. The session description for today read “Re-imagine what is possible. That is the vision of the Tetra Society, a group of volunteer engineers who design custom aids to overcome environmental barriers. Join us and see what they can create that would help you live more independently. Whether to assist you in accessing opportunities in your recreational activity, workspace or home, they may have the solution” Because it is volunteer based, the only cost to you is for the supplies needed to design and build the “solution”. How remarkable is that? If we find out more about them, we will let you know. https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/1619038444228-676KNGK4B8NT75MXGLBY/For+the+Needy+Not+the+Greedy.jpg Miscellaneous - For the Needy, Not the Greedy Medical Equipment & Supplies Melanie: I was on a SCIO Peer Connection workshop today. It was all about the Tetra Society (see post above). The Tetra Society referenced this organization. I do not know anything about it, but it sounds great. It is a Not For Profit Corporation, so the equipment and supplies are sold at a great price. Apparently they have wheelchair parts and lots of other devices. We will be checking this out. Let us know if you’ve accessed their services. https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/1618363918746-WL0UP543FOHWTIV28XVI/Randy+Upper+Mythbusters.jpg Miscellaneous - Mythbusters: Challenging widely held beliefs about individuals living with spinal cord injury Wallace: When asked to speak about SCI, or other topics, I rarely turn down the opportunity. It’s a great way to connect and share. This video, posted on YouTube, was put on by The Kite Research Institute/UHN/University of Toronto. It was mediated by my physiatrist Dr Cathy Craven and features myself and a peer, Lubna Aslam of SCIO. https://t6talk.com/travel daily 0.75 2023-10-04 https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/76935507-98a6-4058-8c98-bd7d0a2635ad/Travel_VIA+Rail.jpg Travel - VIA Rail Canada Accessibility Melanie: A friend of ours let us know that she uses VIA as a mode of transportation. She has had positive experiences and has found it to meet her accessibility needs. Looking at the Via site... I have to admit I felt overwhelmed. So many more steps... and fine print. Via also uses the word "special" A LOT. Gregory Mansfield (Disabled Lawyer @GHMansfield) has commented on the term extensively... pointing out that "The so-called special needs of disabled people are the product of an ableist society that turns the human needs of disabled people into a burden". It shouldn’t be this hard. I would imagine that people have had both positive and negative experiences with opting for the train. I would love to hear what your experience has been… the good the bad and everything in between. Via: We offer an environment where everyone can travel autonomously and confidently. To ensure the greatest ease and comfort of travel, we also provide special assistance services. Do you have a disability or reduced mobility? Here’s what we can do for you. https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/d60d0ccb-8daf-4f34-8913-87ecfdeff43c/fuelService.jpg Travel - fuelService App Wallace & Melanie: We discovered this app when flipping through SCIO's Community Magazine Winter 2021/2022. We have just started using it. We have reached out to the organization and wrote the following "We use full service Husky stations and they are AMAZING. How do we get stations added? Or what can we provide to stations so that they can link with your program?" When we hear back, we will update this post. To learn more, click on the link below… then download the app! fuelService: Filling up the car is one of the biggest challenges for disabled drivers. But its also a challenge for gas stations to help, sometimes they have people available, but sometimes they are single manned and can't help for security reasons. For the disabled driver they don't know which station can help, which can mean driving from station to station to find one that can help. But when they get to the station its hard to get the attention of the gas station staff. Beeping the horn and holding up your disabled card is embarrassing. Worse still, if the gas station can't help because they are single manned they can't even come out to say they can't help. https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/9245d677-4b40-406f-8ecd-dc79ed6ef5fb/WheelMate.jpg Travel - WheelMate App Wallace & Melanie: We found out about this app from SCIO's Community Magazine Winter 2021/2022. Coloplast created it! The more we use it and populate it, the more useful it will become. To learn more, click on the link below… then download the app! Are you a disability ally? You can help by downloading the app and populating the database! WheelMate: WheelMate gives you an instant overview of your nearest wheelchair-friendly toilets and parking spaces on an interactive map. It is powered by wheelchair users who add and verify every single location themselves, ensuring it works the way it should. It is easy and simple to use, and it is free! https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/48417536-5107-4cf4-872a-9f071ccc1ba1/AccessNow_Discover+Accessible+Places.jpg Travel - AccessNow App Wallace & Melanie: We learned about AccessNow from SCIO's Community Magazine Winter 2021/2022. This is a great way to collect data and share it with others. To learn more about the organization, click on the link below... then download the app! Are you a disability ally? You can help by downloading the app and populating the database! AccessNow: At AccessNow our mission is to establish a go-to resource for accessibility information. We are building a connected platform to empower all people to discover a world of accessible opportunities, make better decisions and remove barriers. Leveraging our intelligent technology, we are learning how accessible the world is and mapping as many places as we possibly can. We invite you to join us. A worldwide community, passionate about change, together we can empower each other to have access now. Every review added to our platform is one more instance of advocacy, one more experience that highlights the accessibility of a place. Every pin, every review counts.. https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/b73c497e-5e8d-45a2-a13e-c4d17946fc89/Travelling+Without+Barriers.jpg Travel - Travelling Without Barriers Melanie: We received 2 copies of the Fall 2021 CAA Magazine. We try to minimize the mail we get that could end up in the recycling, so Wallace and I discussed cancelling the magazine. Why did we need a magazine? We can go on their website or call CAA with any questions we have. Then Wallace pointed out the article "Travelling Without Barriers" by Miriam Osborne. I liked the article because I did not know there were CAA agents who specialize in travel for people with disabilities. Wallace organizes almost all of our travel plans and he does a stellar job, but he doesn't always have time. I don't seem to have the patience for it, so reaching out to an agent would be helpful for me. Articles like this are also important because they challenge the ableist assumption that people with disabilities don't travel. It is upsetting when Wallace and I are out (even at a grocery store) and someone makes a comment to Wallace like "it's good to see you out"... With that said... I wonder if the title "Travelling Despite Barriers" is a more accurate description... So much more has to go into planning and reseraching if places or activities are accessible. And even though it shouldn't, it does cost more. https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/1627494763827-PQCMF2B4VKT3OTSW8LHJ/Ontario+Accessible+Parks.jpg Travel - SCIO's Accessible Ontario: The Province’s Top 10 Best Accessible Parks Melanie: Now that the province is opening up a bit more, and most of us have had an opportunity to be fully vaccinated, some of us are making plans to get out and see a bit of the world. Accessible Ontario: The Province’s Top 10 Best Accessible Parks is another great resource found on the SCIO website. It would be great to add your travel stories on this page. Tell us about your adventures! https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/1626462622772-BI0MNUZBPVRKJS1VRXT4/FAQs+Travelling.jpg Travel - Travel Websites Created by Travellers with Disabilities Melanie: I was going through SCIO’s Cortree portal to see what I could learn today, and I came across a link for “FAQs: Travelling”. You can access their education centre by registering for Cortree HERE. As our ability to safely travel returns, it would be nice to do some exploring. The reality is, it can be difficult to find places that are truly accessible - it’s not a one size fits all. When checking out the “FAQs: Travelling” page, I took a quick look at 5 travel websites by travellers with disabilities. They only blog about the places they themselves have vetted and can recommend. It appears they are all based out of the US. If anyone knows of any Canadian counterparts, please let us know – we like to have as much Canadian content as possible. Spin the Globe Curb Free with Cory Lee Wheel the World Papa Wheelie Wheelchair Travel It would be great to populate this page with the accessible places YOU’VE been to. Share with the community by sending us information and photos of the places you love to visit! https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/1613863603546-IIMXAXXK0IASI7JJ716Y/cartoon+train.jpg Travel - The Trains of the Netherlands Wallace: One of my favourite trips was to Rotterdam (a city in the Netherlands). I travelled there on my own (about 20 years ago) with just a backpack of my supplies (catheters, leg bags etc.), some clothes and my wheelchair. It was a very accessible city, the public transit was great. My favourite part of the trip was travelling by train. I could hop on and off when I wanted, making independent travel a breeze. I wish I could remember the name of the hotel I stayed in. They had roll in “wet” washrooms - making it so easy to clean up after a day of adventuring. So much of what we have to deal with day-to-day is attitudinal barriers - that was not an issue there. I was treated as I should be, no different than anyone else. https://t6talk.com/physical-health daily 0.75 2023-10-04 https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/24a6db48-80d5-4693-93ae-6a93610d1c6e/Physical+Health_Pressure+Sore+Prevention.jpg Physical Health - Spinal Cord Essentials: Pressure Sore Prevention Melanie: I trace my fingers over the scars on Wallace's beautiful body. They tell a story... They are a part of him. This is where they inserted a chest tube to relieve fluid build-up in his chest cavity that was collapsing his lung. This is where they opened him up from front to back to repair a tear in the plural lining of his lung. This is where the accessed his spine four times over the past 34 years to make repairs. These scars represent life saving measures. Then there are 3 scars that tell a story of neglect and lack of empathy. The scars of pressure sores that struggled to heal. A 20 year old Wallace in acute care, a nurse bending over him with his rotting flesh hanging from a pair of tweezers stating "look at what we have to deal with every day because of you." Regular skin checks are essential. Whether you are in hospital (where they SHOULD know better), or performing/directing your own self care at home. Spinal Cord Essentials has a great document you can download and can be found by accessing the link below. Spinal Cord Essentials: Pressure sores greatly affect the things you can do. Sometimes they can’t heal on their own and need surgery. Pressure sores are dangerous because they put you at high risk of infection. In extreme cases, these infections can even cause death. https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/07b821fc-bfb6-43f5-b038-8464411414c7/Taking+a+Sitting+Stand+-+John+Loeppky.jpg Physical Health - Taking a Sitting Stand: The Spoon Theory Melanie: There are many articles and videos explaining The Spoon Theory. This is just one of them - but it's a good one. The video at the beginning tells it all. John Loeppky does a stellar job. This is important for EVERYONE to consider. It can help you to explain your energy levels to others AND it can help challenge ableist thinking. When we have a greater understanding of what others may be going through we become better friends, partners and allies. I have decided to include this on the following pages: ABC of SCI, Mental Health and Physical Health. John Loeppky: It's all too easy to exclude disabled people because of a sense of inconvenience, but that can leave us feeling unwanted. https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/1613860119264-V0YRVFY20V0D7Z5APK49/working+memory+deficit.jpg Physical Health - Learning How to Learn Wallace: I was 20 years old and just starting my second year of university when I sustained my SCI. During the year of my recovery and rehabilitation, I went through testing for any possible cognitive damage I may have sustained. During this process I was diagnosed with a working memory deficit disorder - something I was born with. It explained why I had issues with traditional forms of education, why I was put on academic probation my first year of university and why I was failing my second year. Armed with the knowledge of my learning disability I was able to access strategies for learning how to learn. When I returned to school I completed an undergrad degree in Psychology and went on the earn a Master in Social Work. I have enjoyed a number of different positions within (and outside of) my field, but my current job as a Clinical Research Associate has been my favourite to date. My goal is to start a travelling podcast with Melanie - interviewing people in the SCI community while travelling across Canada. If I had not sustained an SCI, my learning disability would not have been discovered. My SCI opened doors for me. https://t6talk.com/sexual-health daily 0.75 2025-04-23 https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/19e281fc-a637-43e0-a9b7-1a1f80b8b397/sieccan.jpg Sexual Health - SIECCAN (Sex Information & Education Council of Canada) Resources Melanie: Who knew about this amazing organization? I didn't. While working on our Sexuality & Access Project 2.0, we have met some brilliant people doing great work. We were invited to join a webinar and I noticed that one of the participants was from SIECCAN. I reached out to them and had the opportunity to learn more about their organization. We are now on a mailing list, so we get updates on what's new. NEW & EXCITING: to access their Disabled Youth (physical disabilities), Sexual health information sheets, click on the image or HERE SIECCAN: The Sex Information and Education Council of Canada (SIECCAN) is a registered not-for-profit charitable organization that was formed in 1964. SIECCAN works with educators, health professionals, community organizations, governments, and other partners to promote the sexual and reproductive health of Canadians. A core objective of SIECCAN is to increase the capacity of educators and institutions that deliver education and healthcare to Canadians to provide comprehensive sexual health education. https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/17874439-97f7-48ca-90b2-00eafd0ad248/Sexual+Health_The+Pleasure+is+Ours.jpg Sexual Health - ‘The Pleasure is Ours’: 3 Essays on Sex After Spinal Cord Injury (New Mobility magazine) Melanie: I work at populating the website as time and energy permits. Looking today, I have 200 posts saved to write up and add to these pages. This means enough time has passed that I have forgotten how I came across this New Mobility article. OOPS! Sharing our experiences, and looking to learn about the experiences of others, is so important. If you're reading this, you get it. New Mobility: For Valentine’s Day (2022), we asked three people with spinal cord injuries to talk about how they experience sex and intimacy. Their backgrounds are different. Their levels of function are different. But they’ve all dealt with the confusion and discovery that comes with defining their own concepts of sexuality to fit their bodies and desires. These are frank and open discussions, and we hope they resonate with your own experiences. https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/514ca701-5c11-4252-848e-baac1cfcce37/Sexual+Health_Sensual+Solutions+Logo.png Sexual Health - Sensual Solutions for Disabled Adults | Re-inventing intimacy ... Melanie: Wallace and I have a lot of conversations with people about sexual health and disability. If you are able-bodied, think back on the sex-ed you MAY have received in school. Often, it was delivered by a teacher from the school, and if your experience was like most of us, the teacher could not have been more uncomfortable. How does that foster a conducive atmosphere of learning? And forget about the content. Any attempt to make improvements to the curriculum have been blocked by people who feel sex education does not belong in schools. NOW... add disability to the equation... "What? They don't have sex!". People with disabilities are still being left out of the conversation at school because of the naive societal notion that it does not apply to THEM, further legitimizing the myth... adding to the internalized ableism people with disabilities harbour within themselves... and adding to the ableism of people without disability. The care and maintenance of our sexual health is an "act of daily living", but our society is still so uncomfortable with the topic. This neglect has a lasting impact and puts lives at risk. There are so many forms of education we can explore, but today we want to talk about Sexual Surrogacy. This is a type of therapy that includes a coach and a client. Goals are discussed, a plan is established, and the coach collaborates with the client to better understand what works for them, and what they might be able to offer a partner. For some clients, it might be emotional support that is needed. For others, it might be how to navigate the logistics of how their disability presents. These sessions are specific to the clients' needs and goals and there are often a set number of sessions to maintain a caring, but professional relationship. Generally, it is designed to help clients access their sexual health practices independently and with their partners (if desired). This is our LIMITED knowledge of the topic. We would certainly defer to the experts in this field, like Trish St. John of Sensual Solutions. Check out her website, call her, email her – Trish is lovely, approachable, and knowledgeable. She wants to hear from you. Trish: Why would we marginalize and shut-out a whole group of people based on being differently abled? Is there an addendum to Maslow’s Hierarchy of Needs that says, “except for those who’s bodies don’t function the same as ours?” Basic human rights include all humans regardless of gender, sexual orientation, race, religion, disability, or challenge. If you would like to learn more about Sensual Solutions and re-inventing intimacy for yourself or someone you know, please contact us. Google Reviews: "This is an amazing service, thank you doing this. You are saving LIVES!! Keep it up!!", "Fantastic. Compassionate sexual healing!" Serving: The greater Vancouver area & Vancouver Island BC, Edmonton AB, and Toronto ON. Contact: visit www.sensualsolutions.ca or call 604-836-6484 https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/30068ae0-b63a-4867-8e54-db7d085f2be9/Sexual+Health_The+Unsyted+Radio+%26+t6talk.jpg Sexual Health - The Unsyted Radio & t6talk Wallace & Melanie: Chad Bouton reached out to us last year and asked if we would be interested in chatting. We had a preliminary chat with him to get to know one another and how we might approach a podcast recording with him. We should have recorded that initial meeting too. Chad is so easy to talk to. We finally did do a recording with him and we focused on the topic of sexual health, speaking about our personal experiences before we became a couple and our experiences as a couple. We hope you enjoy it. The Unsyted Radio: In today's thought provoking episode of the podcast, Chad Bouton talks with Wallace and Melanie of t6talk. Although t6talk started off as a resource for the spinal cord injury (SCI) community, t6talk's continued outreach has led them into the broader disability community. t6talk aims to connect with anybody and everybody living with a disability and/or chronic illness. t6talk recognizes the power of peer when people share resources, personal stories, and experiences. Host Chad Bouton talks to Wallace about his lived experience with a spinal cord injury. Melanie and Wallace share their story of becoming a couple. Additionally, Melanie and Wallace talk about how they founded t6talk. A large majority of this episode concerns sexual intercourse in disability; not to mention, sexual exploration and expression within the disability community. https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/888658d5-0977-4820-bd95-83cffb8b457c/Sexual+Health_Love+Abilities.jpg Sexual Health - Love Abilities… and their International Virtual Festival Melanie: I attended the 2021 Love Abilities International Virtual Festival last October. For three days I was immersed. At one point I put my earbuds in and went out to garden while listening to the presenters. One session after the other meant I did not have to choose between sessions running at the same time. I learned a lot and had some of my views challenged - an uncomfortable but important and valuable experience. the experience left me wanting more, so I was so pleased to learn that they will be running the festival again in 2022! Hooray! The cost in 2021? 37.24 pound sterling or just under $60 CAD... for 3 SOLID DAYS. They undercharge, but I also know the co-chairs, Lorraine Stanley and Dr Mitchell Tepper, are wanting to ensure the festival is economically accessible. I have offered to help find sponsors for the 2022 festival. If you know of any organizations I should approach... please let me know. Check out the link to the site below and see what was offered up in 2021. Amazing presenters and topics from across the globe. Learn about the festival co-chairs… Lorraine Stanley and Dr Mitchell Tepper by checking out the posts below. Love Abilities: Our mission? To provide people, with all types of disabilities, the knowledge, skills, and resources to take pleasure in their sexuality and to clear a pathway for optimal sexual expression. Our vision? People with disabilities will be empowered to lead the fullest sexual lives possible; and for their caregivers, lovers and allies to help support or be part of their life. https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/c34f0699-8572-4d0d-882a-2dd0dde09b8e/Sexual+Health_SWAD.jpg Sexual Health - SWAD... Where Disability and Sex Come Together Melanie: Take a moment to check out SWAD. "SWAD is a training organisation, specialising in the area of disability and sex". Lorraine Stanley is the CEO and she is from Poole, UK. Wallace and I had the pleasure of meeting Lorraine over Zoom a couple of weeks ago. Dr Mitchell Tepper was also able to join this conversation. We knew the two of them were doing great work, but were so pleased to meet two people so willing to engage and listen to what other people are working on and look for ways to collaborate. We love these partnerships. SWAD stands for Sex With A Difference... I first learned about Lorraine when I attended the 2021 Love Abilities Virtual Sexuality and Disability Festival which she co-chairs along with Mitch (see my post on Dr Mitchell Tepper to learn more about him). Over the course of the three day festival, I looked forward to hearing her kind and loving voice. Lorraine is filled with love and wants to share... a generous spirit… and a SEX GODDESS SWAD: As a newly disabled woman in 2007, Lorraine Stanley, hunted high and low for support and guidance on the subject of sex and disability, and found very little accessible help. Lorraine decided to be pro-active, and ran several sex and disability discussion groups at her local independent living centre. SWAD grew from the seeds of a community project into the training organisation it is today, primarily covering Dorset and surrounding areas. Sex and disability is our favourite topic, and we are always happy to chat about it. We would love you to join in our conversation! https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/96a9c06a-0405-4124-ad85-7e389fa74b8a/Sexual+Health_Dr.+M+Tepper_Sexologist%2C+Sex+and+Disability%2C+Sex+Coach%2C+Relationship+Coach.jpg Sexual Health - Dr. Mitchell Tepper… Sexologist, Sex and Disability, Sex Coach, Relationship Coach Melanie: Wallace and I have met some really amazing people, inside and outside of Canada. Dr Mitchell Tepper is one of these people. After sustaining a spinal cord injury, Mitch pursued a career in finance and soon discovered it was not his calling. Listening to his inner voice, he went back to school and became a Sexuality Educator and Coach. He and his wife live in Atlanta, Georgia. His website is linked below. In addition, he co-chairs the Love Abilities Virtual Sexuality and Disability Festival with Lorraine Stanley from the UK (see my post on SWAD to learn more about Lorraine). And… He is the Executive Director, Director, Producer, and Writer of the award winning documentary Love After War: Saving Love, Saving Lives. Dr Mitchell Tepper: Chronic illness or injury doesn’t have to destroy your intimate life. As a Sexuality Educator and Counselor living with spinal cord injury, I’m here to serve individuals who are struggling to understand sexual response and expression post-injury or illness. Having a disability doesn’t make you asexual. Erotic thoughts, desires, and fantasies are normal. And you can still gain satisfaction from those triggers. Despite what you may have heard, it’s possible to tap into your sexual pleasure post-injury or illness. If you are ready to explore new and exciting ways to reclaim your sexual life, I invite you to contact me to schedule a complimentary 15-minute Discovery Session. Together, we’ll discuss where you are and determine the steps you need to take to reach your intimacy goals. https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/dc8bb419-a025-4bcd-8c8f-2c786dd5accc/Bumpn+Joystick.jpg Sexual Health - Bump'n Joystick Melanie: If you haven't checked this invention out yet... do it!!! And you can get it at a reduced price right now. So much time, and thoughtful attention has gone into creating the Bump'n Joystick. People tested different versions and provided feedback so that improvements could be made - so it has been tried and tested. Bump'n: Sexual pleasure is a human right. That's right, our friends at W.H.O. (World Health Organisation) have classified sexual pleasure as a ‘human right’. But we’ve discovered that hand limitations are preventing hundreds of millions of people from enjoying the ‘Big O’ on their own. We think that blows (and not in the good way). We believe everyone should be able to ‘get off’, to bump’n grind and get down, regardless of ability. So,whether you’re disabled or non-disabled we’re bump’n the barriers to your sexual pleasure! If you have used this device, let us know what you thought! We want to hear from you. https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/e32e25a2-6b99-42af-a6d8-bfcf9a38e33f/TASCC.jpg Sexual Health - Talking About Sexuality in Canadian Communities (TASCC): Supporting Youth With Disabilities Melanie: Think about all of the subjects that were taught to you in school. Think about the subjects that were not talked about, the subjects we were discouraged from talking about. There are gaps to our education. Communication skills are the foundation for so much and yet so many of us struggle with communicating our needs and wants, which can lead to unhealthy relationships (with ourselves and with others). Comprehensive, inclusive sex education programs are vital. We need all the resources we can get. This site has resources for parents and service providers. History of TASCC: TASCC was first launched in 2011. It was developed for service providers working with high risk youth, such as those street-involved. TASCC was relaunched in 2016 to contain information for parents and service providers of youth with disabilities. In 2020, TASCC was redesigned with information for youth with disabilities. It also includes accessibility features and a learning management system, with online courses. TASCC was made possible through funding by the Maternal Newborn Child and Youth (MNCY) Strategic Clinical NetworkTM (SCNTM) and PolicyWise for Children & Families. TASCC "Good to Know": Children and youth who receive sexuality education that focuses on their needs are less vulnerable to abuse and sexual exploitation and have healthier friendships and relationships. https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/61747459-f733-4d3d-947b-95a2e2df88ba/Take+a+Look+at+This+Heart.jpg Sexual Health - Take a Look At This Heart Melanie: My friend Teri Thorson sent me a link to an article on the site Wheel Life called "Sex, Love, and Disability: Ben Duffy’s New Documentary Exposes It All". To read the article, click HERE. After reading the article, I searched for the movie, Take a Look at This Heart, and found it on YouTube. Click on the link at the bottom to see the full movie. I just finished watching it and fully enjoyed it. Wheel Life: Throughout the documentary (Take a Look at This Heart), people living with varying degrees of disability open up to Duffy and his camera sharing stories about their romantic relationships or lack thereof. Where some of the cast are in healthy relationships, others have yet to find that connection we humans innately seek. I would love to hear your feedback! https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/e3824d91-e4f6-4a87-9f93-919976c626c6/pleasureABLE.jpg Sexual Health - pleasureABLE: Sexual Device Manual for Persons with Disabilities Melanie: This pleasureABLE manual was developed by Dr. Stacy Elliott along with Kate Naphtali and Edith MacHattie. Kate and Edith were under the supervision of Dr. Andrei Krassioukov This resource reviews many sexual devices and how they might be used. This manual also covers safety concerns such as skin integrity, altered sensation and Autonomic Dysreflexia (AD). pleasureABLE: We created this manual for persons of all abilities, genders, age, race, and sexual orientation to assist with their quality of sexual life. Research shows that sexuality is a major rehabilitation priority for clients, and we strongly believe that sexuality is very important to talk about — something that should be respected, celebrated, playful, and PleasurAble! https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/36dae36a-d129-4bbb-b434-21c9a32fadbf/Holland+Bloorview+Kids+Rehabilitation+Hospital.jpg Sexual Health - Holland Bloorview Kids Rehabilitation Hospital: Let's Talk About Disability and Sex Melanie: I was pleased to find this resource for young people. By sharing our experiences with younger generations, we model for them the importance of open and clear communication. It also encourages them to share and to know that their voices matter. On April 28th, 2021, the Bloorview Research Institute held "a connection day to discuss sexuality and young people with disabilities". You can access the recordings by clicking on the link below. Bloorview Research Institute: The aim of this day was to share the research on sexuality and disability, come up with new research questions and identify poorly understood problems and create an accessible resource that will help start the conversation on sexuality Dr. Loree Erickson and Gabriella Carafa discuss Early Intimate Relationships, Dr. Shaniff Esmail and Rainbow Hunt cover Meaningful Sexual Lives and Sexual Rights, while Dr. Alan Martino and Mari “Dev” Ramsawakh tackle Multiple and Converging Identities. https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/885916d9-659b-487c-b6db-9bccb7831ef2/Action+Canada+for+Sexual+Health+Rights.jpg Sexual Health - Action Canada for Sexual Health Rights: Sex, Sexual Health and Disability Melanie: I cannot tell you how I found this organization. Some searches can take you down a very deep rabbit hole. Sometimes you climb out with very little (or nothing) and other times you find all kinds of new resources. I like that this organization also talks about intellectual disabilities - illuminating the truth that "All too often, sex-ed ignores the needs and realities of people with cognitive disabilities." They also have a Hub Feedback form so that people can alert them to errors or changes needed. This invitation makes it a two-way conversation. There are A LOT of resources and information on this site. Action Canada: Action Canada is building on the 50-year legacy of our predecessor organizations, including Canadians for Choice, Action Canada for Population and Development, the Canadian Federation for Sexual Health, and the Planned Parenthood Federation of Canada. https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/1630606348924-6KLC28Q6L8S63B0ZSQQ1/I+Give+Diasbaled+People+Orgasms+for+a+Living+by+Spencer+Williams.jpg Sexual Health - I Give Disabled People Orgasms for a Living (And I'm proud of it) Melanie: Sometimes when I am searching with world-wide-web, I feel like Alice falling head first down a rabbit hole. This is not a bad thing, but I sometimes lose the thread of how I got from one place to another. There are so many people out there doing amazing work to make our world a better place. This post has a few links that I hope you will check out. The Article: "I Give Disabled People Orgasms for a Living (And I'm proud of it)". Spencer Williams is the host of the radio program All Access Pass. He is a disability advocate and he is passionate about discussing sex and disability. In the article, he talks about his personal experience with Medically Assisted Sex Surrogates and he interviews a surrogate. See the link at the bottom of this post. You can also check out the other articles Vice has to offer on disability HERE. The Video: As you scroll down... reading the article... there is also a video you can watch called "Inside the World of Medically Assisted Sex". What an important conversation! Trish St.John (the founder of Sensual Solutions) discusses why she started her organization and why its relevant. Spencer is also interviewed as a client of Sensual Solutions. Well worth a watch. The Intimacy Coaches: I have yet to find an organization like Sensual Solutions in Ontario. If you know of one, please let us know! Check out Sensual Solutions HERE. The Long and the Short of It: We need to keep these conversations going and bring these topics to the table. The more we think and talk about sex and disability (and access), the less taboo it is. Most of us are sexual beings - disability shouldn't close the door. If you have any resources to share, we want to hear from you! We also want to hear from you if you have any questions. https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/1630606052273-M5LGLWM6M275CXZIJJQI/Spinal+Cord+Injury+and+Intimacy+-++Shepherd+SCI+Peers.jpg Sexual Health - Spinal Cord Injury and Intimacy Melanie: The word "intimacy" can mean different things to different people. This video demonstrates the importance of intimacy in our relationships. This 8 minute video is from the Shepherd Centre - Atlanta Georgia Enjoy! https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/1630605460689-Z632CZ584YGDAEMDWR6L/Myths+and+Misconceptions+with+Dr+Amy+Muise+and+Dr+Jackie+Kathnelson.jpg Sexual Health - Myths and Misconceptions with Dr Amy Muise and Dr Jackie Kathnelson (from ILCWR's Disability and Sexuality Summer Webinar Series) Melanie: This is the 4th and final instalment of ILCWR's Disability and Sexuality Summer Webinar Series. Dr Muise and Dr Kathnelson did a great job presenting this webinar. They have a depth of knowledge and the ability to clearly and openly communicate the material. Great presentation. Enjoy! https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/1628102935995-H7U2I7FZWMVYR7GIS5QD/Womens+Pleasure_Regan+Linton_New+Mobility.jpg Sexual Health - Women’s Pleasure by Regan Linton Melanie: “Women’s Pleasure” is a great article by Regan Linton and is posted on the New Mobility website. It starts with... "This article isn’t about medical expertise or biological research. It’s also not about sadness, longing, or nostalgia for what once was before injury or illness. It’s about everyday women and their real, current sex lives. It’s about the myriad of possibilities for sexuality after paralysis — that sex can be fun, adventurous, frivolous, messy, tender, exploratory and more. And it’s about opening a door for communication." And the article ends with "So go ahead, ladies. Get yourself a mirror, a vibrator, a wedge, a beanbag, a partner, and venture into something new. Don’t stop talking or sharing. Be a unicorn!" They stress the importance of communication and we couldn't agree more. https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/1628102326483-U5Q35O25E38MQ4SEC3SR/Sexuality+after+SCI.jpg Sexual Health - Sexuality after SCI - Video Series Melanie: Mount Sinai Hospital in NYC hosts a website called Sexuality After SCI. Dr. Angela Riccobono is a psychologist at Mount Sanai and she appears to be the force behind this site. She has the following to say "This video archive and website is a resource for people living with spinal cord injury, their partners, and the healthcare professionals who treat them. Our goal was to create a platform that provides the knowledge and practical information needed to encourage communication and instill hope that love, sex and intimacy are all possible after spinal cord injury. Love yourself, be adventurous, and remember, sex is fun. Get in touch with your local community and reach out to your peers for mentors, friends and maybe even love." Angela was inspired by her friend Jack Hofsiss. Please take the time to read what she has to say about Jack under "A Note From Angela". On this site is a video series called Sex, Love and Intimacy After Spinal Cord Injury. The series includes: Debunking Sexual Myths, Redefining Sex, Sex Lfe and Well Being, Confidence and Self Esteem, Communication, The Big O, Effects of SCI on Sex, Erections, Pre-Injury Factors, Managing Bodily Functions, Fertility, Talking to Your Doctor, Dating After SCI, Facilitated Sex, Adaptive Devices, Positioning With Partners. I was especially thrilled to see the video on Facilitated Sex as this is a topic Wallace and I are currently looking into (it's like searching for The Loch Ness Monster). This collection of videos are small bites of a larger conversation. Each one is only about 6 minutes long. I think they would make a great introduction for a group discussion. There are so many different stories out there and so much more to say! The content and message of these videos are similar to what we focus on when we talk about intimate relationships and SCI. Effective communication is so important for all of us in our day to day lives and it is certainly the key to a healthy and vibrant intimate relationship. There is also a page with videos specifically for Healthcare Professionals and an Additional Resources page. I am working my way through these too. https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/1628102083395-3ODSLJA3U8VYWM3W66CA/Shepherd+Center_Empowering+Women+After+SCI_Intimacy.jpg Sexual Health - Empowering Women After SCI: Intimacy Melanie: I was looking for some videos to share featuring women discussing intimacy and SCI. I enjoyed this video. It was brief and didn't get into a great amount of detail, but the messages were positive.They discussed the importance of confidence and knowing yourself, humour in the bedroom, as well as the necessity of trial and error. This video was developed by the Shepherd Center in Atlanta, Georgia. It is a private, not-for-profit hospital specializing in medical treatment, research and rehabilitation for people with spinal cord injury, brain injury, stroke, multiple sclerosis, spine and chronic pain, and other neuromuscular conditions. https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/1628101500146-HC7TBNR7YLTRR70MHGZL/SHORE+Centre.jpg Sexual Health - Sexual Health with SHORE (from ILCWR’s Disability and Sexuality Summer Webinar Series) Melanie: This is the 2nd session out of 4 in ILCWR's Summer Webinar Series. Their video description reads as follows... "SHORE presents on sexual health and answers questions from participants. SHORE offers inclusive sexual and reproductive health services in our community that uphold the dignity of everyone." SHORE (formerly known as Planned Parenthood) was founded in 1972, providing sexual health information and support. Visit and explore their website HERE. Rached is a great presenter - very relaxed and knowledgeable. https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/1627520367323-2HQ56ZBRI6V2KN0YD0M2/ILCWR+Session.jpg Sexual Health - Disability and Relationships with Wallace and Melanie (from ILCWR’s Disability and Sexuality Summer Webinar Series) Wallace and Melanie: The Independent Living Centre of Waterloo Region (ILCWR) is hosting a Summer Webinar Series on Disability and Sexuality. Sheri Roberts, ILCWR’s Community Resource Coordinator, asked us to speak about Disability and Relationships. This event happened on July 15th and we had a blast. ILCWR will be recording the rest of the sessions and we will post links to them as they are made available to us. Thank you Sheri To our family and friends... we share our personal experiences regarding sex and sexuality... we are comfortable and happy to have you view our videos, but we wanted to be aware so you can make an informed choice. https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/1627092739221-396AF29GXIQIDFHL9SEQ/Enhance+the+UK+3.jpg Sexual Health - Enhance the UK Wallace and Melanie: In the entry just below this one... we give you a link to watch "Undressing Disability" presented by Emily Yates of Enhance the UK. We have just started exploring their site and wanted to post it here for your browsing pleasure. Taken from the "About Us" page: As a user-led charity, Enhance The UK aim to change the way people view disability, which often involves removing the ‘fear factor’ that so often surrounds the subject. We support businesses to be more inclusive by providing disability awareness training, British Sign Language workshops and accessibility audits, amongst other things. Disability Awareness Training in schools is hugely important to help challenge stereotypes and encourage a positive view of disability from a young age. Many children that we train have not yet had the opportunity to engage with a disabled person and ask questions in an environment without judgement. We pride ourselves on our ability to offer this, whilst delivering sessions that are fun, interesting and memorable. Please do get in touch with us today to find out more about any of the services we offer. ‘Undressing Disability’ is a global campaign which aims to raise standards in sexual health and sexual awareness for disabled people. As part of this we run the Love Lounge, an online forum providing free advice on all things sex, love and disability. We also have free downloadable resources. https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/1627090841209-TU6DDKJ9UXC60UNC7E9Y/VDRC.jpg Sexual Health - Kevin's TEDx Picks Wallace and Melanie: We have had the good fortune to connect with Kevin Munn, a Peer Support Worker from the Victoria Disability Resource Centre (VDRC). We are working on a project together... exciting! We will keep you posted! Kevin sent us 3 TEDx videos on the topic of sex and disability and we thought they would make a great addition to this page. 1. "Every Body: Glamour, Dateability, Sexuality & Disability" presented by Dr. Danielle Sheypuk (TEDxBarnardCollege). Length: 16 minutes. Notable excerpt: "The silent message: the more in shape your body, the better the sex. The unspoken conclusion: if you have a disability, you are too sick to have sex." Click HERE to watch the video. 2. "Undressing Disability" presented by Emily Yates. Length: 15 minutes. Notable excerpt: "Many young disabled people require a little bit of care and support, within their home lives, within their school lives, whatever they've got going on. One thing that often isn't in any of their care plans is anything to do with sex and relationships." Click HERE to watch the video. 3. "Sexuality and Disability: Forging Identity in a World that Leaves You Out" presented by Gaelynn Lea (TEDxYale). Length: 21 minutes. Notable excerpt: "If you were to ask me what the biggest gap has been so far in my life, I would actually say sexuality. And although it might seem kind of surprising, research shows that sex has often been rated as one of the areas of greatest oppression for people with disabilities." Click HERE to watch the video. Thanks Kevin! https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/1626293205632-IVG6S2Q6S2ABP3GHS28O/Andrew+Gurza+-+Picture+This+documentary.jpg Sexual Health - Andrew Gurza & “Picture This” Melanie: Do you know about Andrew Gurza? Self-described “Disability Awareness Consultant and Cripple Content Creator”? If you don’t, I encourage you to check him out. He is a powerful voice for disability and being true to YOU. Andrew is a busy person, with lots of projects on the go. Visit his Linktree HERE. I just watched his 2018 NFB documentary "Picture This" for the third time (link below). Andrew's openness about sex and disability is refreshing and he candidly discusses the zero representation of disability in “gay male media”. He speaks from the heart and tells it as it is, sharing his "truth about disability", as does Stella Palikarova – his “Deliciously Disabled” partner. Andrew encourages all of us to be true to who we are… to be open and honest. His friend, Tinashe Dune, who has earned her PHD in Human Sexuality, stated the following: Sex is a human right. Sexual health, sexual wellbeing, sexual interactions. The World Health Organization says it is a human right. But there seems to be people for whom it is denied, for who it is not accepted, So, clearly it’s so fundamental that people are asking “Are you human enough? Can you participate in this fundamental aspect of humanity?” Are you human enough? Let that sink in… Wallace does not currently access attendant care and both of us are curious about the relationship between people with disabilities and their caregivers. When it comes to a person’s sexual health, what assistance can Personal Support Workers (PSWs) provide? To be clear – no one is suggesting that PSWs should engage in sexual activities with their clients. It is about ensuring clients have what they need, leaving to provide them with privacy and then returning to help with any post activity tasks. Stella Palikarova does a brilliant job of shining a light on this, “… they (government) fund computers because communication is considered a basic access need. But apparently, access to your genitals is unimportant.” Andrew goes on to discuss the inaccessibility of most sex toys. Unless you are with an intimate partner, this means navigating a difficult conversation with a PSW… with no guarantee they will agree to assist. If, as a society, we were able to talk openly and freely about our NATURAL bodily functions and our sexual wellbeing, it would be no big deal to discuss how we may do these things differently from one another. We think we live in an open and liberal time, but we have jammed ourselves into the corner and this limits us all. Diversity is not the enemy. Like other people living with a disability, Andrew has claimed the terms "cripple" and "crip". He is aware that not everyone is comfortable with these terms. It is a very personal choice – and a powerful one – but it is HIS to make. Wallace also uses these same terms, along with "gimp", as a means of taking control away from those who would use the terms to demean or “other”. https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/1622768357093-VC5WPK1HL5V6E70VHNHN/Wallace+and+Melanie+SCIO+Session+3.jpg Sexual Health - Session 3: Sex and Sexuality See Session 1 and 2 lower down on this page. Wallace & Melanie: On Wednesday, June 2nd, we ran session 3 of our 3 part series on SCI & Intimacy for SCIO. Session 3 was on "Sexuality” (1 and 2 are posted lower on this page). It was an intensely emotional experience. There were some hard moments, but we also had a lot of laughs. We have enjoyed this whole process. Thank you to SCIO - but most especially, thanks to everyone who was able to join us. Thanks for sharing your time, for actively listening and for laughing with us. We are grateful for the opportunity to talk about topics that are important to us... that we are passionate about. Our continued hope is that other people in the SCI community will share THEIR stories and experiences too. We are not all the same. Our voices are different and they ALL have value. The greater the diversity of voices, the greater the chance that someone who is searching for a connection will find a voice they can relate to. We look forward to hearing from YOU! To our family and friends... we share our personal experiences regarding sex and sexuality... we are comfortable and happy to have you view our videos, but we wanted to be aware so you can make an informed choice. https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/1622140993114-7L92GYCN5VN1PAHRZ0D3/The+Sessions.jpg Sexual Health - The Sessions Melanie: I watched this movie a number of years ago and I was struck by the subject matter. Sex Surrogacy gets very little attention and is tucked away like a dirty little secret. I have started to look into this more - especially when it comes to the legality of it in Canada. I read a Healthline article this morning A Beginner’s Guide to Surrogate Partner Therapy (Feb 27, 2020). It was a very good overview. If there is anyone out there who has more information on this or would like to talk about it, contact us! “Based on the poignantly optimistic autobiographical writings of California-based journalist and poet Mark O'Brien, THE SESSIONS tells the story of a man confined to an iron lung who is determined - at age 38 - to lose his virginity. With the help of his therapists and the guidance of his priest, he sets out to make his dream a reality.” Searchlight https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/1622144170309-19TW7RNLDKJ9OT0DAG0C/Sexual+Health+of+People+with+Spinal+Cord+Injury.jpg Sexual Health - Sexual Health of People with Spinal Cord Injury Wallace: During our SCI & Intimacy talk on Communication last night (see entry below) I referenced an article, “Sexual Health of People with Spinal Cord Injury” (Stefano Federici1, Francesco Artegiani, Daniele Diotallevi, Giovanna Caruso1 and Alessandra Castellani Mencarelli). It addresses the phallocentric culture we live in and discusses how women are led to focus on their physical appearance post spinal cord injury. This is a call out to women with a SCI - we would love to hear from you! We want to share YOUR stories and experiences. https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/1622139691746-R2EH7O9V1PYGSRHRSXAZ/Wallace+and+Melanie+SCIO+Session+2.jpg Sexual Health - Session 2: Communication See Session 1 lower down on this page. Wallace & Melanie: On Wednesday, May 26th, we ran session 2 of our 3 part series on SCI & Intimacy for SCIO. Session 2 was on "Communication”. Despite Wallace having a headache, we enjoyed our time. We had enough material for a couple of hours. We would have been okay with talking that long, but we know that, despite Covid, people have other things to do (smiling). Thanks to everyone who was able to join us! Our last session is next week (June 2nd). See our Events page for more details. We will post that video on this page too. We are grateful for the opportunity to talk about topics that are important to us... that we are passionate about. Our continued hope is that other people in the SCI community will share THEIR stories and experiences too. We are not all the same. Our voices are different and they ALL have value. The greater the diversity of voices, the greater the chance that someone who is searching for a connection will find a voice they can relate to. We look forward to hearing from YOU! To our family and friends... we share our personal experiences regarding sex and sexuality... we are comfortable and happy to have you view our videos, but we wanted to be aware so you can make an informed choice. https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/1621624228159-DIU8GMWCH9J8FB49A0GK/Wallace+and+Melanie+SCIO+Session+1.jpg Sexual Health - Session 1: Myths & Misconceptions About Sex & Sexuality Wallace & Melanie: On Wednesday, May 19th, we ran session 1 of our 3 part series on SCI & Intimacy for SCIO. Session 1 was "Myths and Misconceptions About Sex & Sexuality". It was a great evening. We enjoyed sharing our point of view and our experiences. We are looking forward to the next 2 sessions. See our Events page for more details. After each of those sessions we will add the videos this page too. We are grateful for the opportunity to talk about topics that are important to us... that we are passionate about. Our continued hope is that other people in the SCI community will share THEIR stories and experiences too. We are not all the same. Our voices are different and they ALL have value. The greater the diversity of voices, the greater the chance that someone who is searching for a connection will find a voice they can relate to. We look forward to hearing from YOU! To our family and friends... we share our personal experiences regarding sex and sexuality... we are comfortable and happy to have you view our videos, but we wanted to be aware so you can make an informed choice. https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/1623171520769-E0661F298JTZO0C4B7LE/Community+Magazine+Spring+2021+-+Sex.jpg Sexual Health - Sex - Does It Make You Uncomfortable? Wallace & Melanie: Earlier this year when we first started working on our 3 Part Series on SCI and Intimacy, Oda Al-anizi of SCIO asked if he could interview us, along with 2 other couples. The article “Sex - Does It Make You Uncomfortable?” was published in the Spring 2021 copy of Community Magazine. The more we talk about sex and sexuality, the easier it is to share and support one another. Our voices are different and they ALL have value. We look forward to hearing from YOU! https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/1618365747197-V77HWNO4IRHB7O8GEUP7/cogent+psychology.jpg Sexual Health - "Examining the psychological and emotional experience of sexuality for men after spinal cord injury" Wallace & Melanie: For a research paper, JD Kathnelson and her colleagues did a bang-up job of making it highly readable, utilizing personal statements from people with lived experience. We also have a great deal of respect for their goal of the study which was "not to predict, but to receive information." One of the takeaways from the study focuses on those who were able to expand their understanding of what sex means and what it means to "be a man", had a more satisfying and enriching sex life post injury. This supports the notion that the narrower our views, the more apt we are to be dissatisfied when we are unable to fulfill the arbitrary limits society sets. Some of the participants expressed that their sex life was more fulfilling post injury, achieving a deeper level of intimacy. We can be our own worst enemies. It is important for us to challenge "traditional" roles and behaviours and consider what damage they can cause or how they can hold us back from achieving a more fulfilling life. The themes of the study include erectile & ejaculatory dysfunction, masculinity, perspectives on disability and physical attractiveness. We believe this study speaks to the importance of providing people access to peer support ASAP post-injury. Life is different after a spinal cord injury, but that doesn’t have to mean a life without fulfillment and overall wellbeing… sex and intimacy are a huge part of this. One of the limitations of this study, like most others, is it is limited to a heterosexual perspective, which the authors acknowledge. We are continuing to look for resources that come from (or include) the LGBTQ2+ perspective. If there is anyone out there who has knowledge and/or resources to assist with this, please contact us. https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/1618366103538-8QKPODWG0BPBIJD8XH1B/Health+Link+BC.jpg Sexual Health - Intimacy and Fertility Wallace & Melanie: This Health Link BC article is a great summary resource for some of the sexuality related issues faced by both men and women after an SCI. If you are looking for something that is short and to the point, this is a good starting place. It addresses intimacy, fertility, desire and sexual arousal. It is written in plain language and is a quick read. https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/1618001897329-1RKB7DRP57APOKOQJIB6/SCE+Sexual+Self-Discovery+and+Body+Mapping.jpg Sexual Health - Sexual Self Discovery and Body Mapping Wallace & Melanie: We have been waiting for Spinal Cord Essentials to post this handout on their site. It has finally arrived! This is a resource that can be used in a variety of situations. The readiness for each individual to explore their sexuality post injury is different for each person. Once you are ready, this handout may be a great tool to explore your body and discover or identify your erogenous zones. It can also be utilized as a communication tool between you and your partner, whether in an established relationship or embarking upon a new one. Body mapping is an activity that enables you to find areas of pleasure on your body, spinal cord injury or not. Please note… this handout addresses Autonomic Dysreflexia (AD). It is important to not ignore these signs. If you are not familiar with AD, we have added a link to that handout below. https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/1618002172205-0BKPRE2AFU3SYBBCSQ3D/SCE+Autonomic+Dysreflexia.jpg Sexual Health - Autonomic Dysreflexia (AD) Wallace & Melanie: This handout supplements the one above on Body Mapping. It is a great resource for those unfamiliar with AD or for those of us who need a refresher. https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/1613875397605-M99NLV1OBR9QX2OEZ0RK/SCI+and+Intimacy.jpg Sexual Health - SCI & Intimacy Wallace & Melanie: To get the ball rolling on this page, we have added a link to a peer connection workshop we did for the SCIO London office this January on SCI & Intimacy. This was our first joint venture putting on a virtual speaking presentation like this. The first 8 to 10 minutes of our talk could have been streamlined… so your patience is appreciated. We loved doing it. It was a great learning experience for us. We are currently working on some new material. We will keep you posted! https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/1618360819790-8KI5TCJB39IEVWG1FIES/3.1+Links+The+Ultimate+Guide+to+Sex+and+Disability.jpg Sexual Health - The Ultimate Guide to Sex and Disability Wallace & Melanie: Both of us can recommend this book by Miriam Kaufman, Cory Silverberg and Fran Odette. Wallace has a hard copy on his bookshelf, and I have an audiobook version. Pick the format that works best for you! They cover a lot of material in this book. It is informative, inclusive and practical. The link below will take you to a Google search as we did not want to suggest where you should purchase this from. https://t6talk.com/parenting daily 0.75 2023-10-04 https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/9413e269-5d5c-42c0-b018-9448cbdb2bb4/Wheel+Love.jpg Parenting - Wheel Love Melanie: I have been going through my notes to figure out who sent me this link so I have held off on posting it. We like to give credit for the contributions made to these resources. If you see this and you sent it... thank you (and let us know it was you)! This video follows one couple in their quest to be parents, but there are other couples sharing their stories too. Sharing builds community. Empathy leads to compassion. We can be resources for one another. STORYHIVE: Love, babies and wheelchairs! A unique couple struggles with infertility and navigating the ups and downs of becoming an inter-abled family. https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/1618339566233-RVJV3NYEZSS2J1YKTASK/SCI+BC+Fertility+and+Parenting.jpg Parenting - Fertility & Parenting Wallace: SCI BC has some great resources on fertility and parenting. Connect using the link below. Click on the “Kids & Parenting” tab to take you to: “Parenting”, “Female Fertility & Pregnancy”, and “Male Fertility”. I came across the “Male Fertility” information while doing research for work. I found this resource to be a great summary of the issues it covers. It is easy to read and is a good starting point. In addition, it addresses some of the myths we face and provides some interesting facts to debunk them. If anyone else has resources they would like to add to this page, please contact us. Or, if you have any questions related to parenting and sexuality, let us know and we will see what resources we can find for you. https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/1613787476426-K3OLYTNQ5DJMOH49MDDA/Wallace+and+Mack.jpg Parenting - Intracytoplasmic Sperm Injection (ICSI) Wallace: I love this picture of my daughter and me. It seems like only yesterday that she was this small. I consider her to be my miracle baby. She was born 10 years post injury. We looked into the reproductive technology available to us and Intracytoplasmic Sperm Injection (ICSI) was the best option. Although my sperm count was good, its motility and viability was compromised by my SCI. ICSI involves injecting a single sperm into a harvested egg before being transplanted back into the uterus. It was a difficult pregnancy and my daughter was born blue because the umbilical cord was wrapped around her neck, but she was strong (and still is) and quickly began to thrive. We love her to pieces. She is now 22 years old. I love being her father. Parenting has brought me a great deal of joy and further reinforced what I am capable of. https://t6talk.com/aging-with-a-disability daily 0.75 2023-10-04 https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/216bbc45-8baf-47bc-a0c3-9a70f70c10b4/Aging_Aging+with+a+Spinal+Cord+Injury_What+Can+You+Expect.jpg Aging with a Disability - SCI Canada: Aging with a Spinal Cord Injury: What Can You Expect? by Lisa Bendall Melanie: Came across this blog by Lisa Bendall and decided to add it to this page. Lisa Bendall: "(A) British study that tracked more than 5,000 people over seven decades found that, since 2010, life expectancy seemed to be inching up again – higher than it’s ever been." and "(This) means we’re in relatively uncharted territory, as more people than ever before are aging with their spinal cord injury. A lot has been discovered, but there’s still more to learn." CALL OUT!!! Share your AGING experience with peers… we want to hear from you… contact us. https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/67f281a7-06e5-4ecc-90a0-4656bc6bffa8/3+and+AC.jpg Aging with a Disability - 3 Wheeled Compact Walkers and Aunt Catherine's Independence Melanie: As an able bodied person, there are times when I have been met with temporary physical disabilities. As I get older, I look around me to see what others are doing to maintain their independence as they age. The more we share what works for us, the more it can help others find solutions that work for them. My Aunt Catherine is a good example of what it means to be pragmatic, creative and independent at 84 years of age. Due to previous injuries, surgeries and the natural aging process, she has modified her home to suit her needs by removing tripping hazards and by utilizing a three wheel walker (or “rollator”). I asked if she would share a "testimonial" with us... Aunt Catherine: I first saw a Drive compact 3 wheel walker when I watched a person wind their way easily through a crowded waiting room at a doctor's office. I immediately asked them for information about the walker and purchased two. One for the main floor, which makes sharing the kitchen space possible, and one for the upstairs, as it fits so easily through the bathroom door. I have since purchased a third, which stays in the car at all times. A Drive compact walker is light as a feather, so shopping on my own is a pleasure. You can put a thermos of coffee, mugs and some muffins in the carrier part and easily serve refreshments indoors or out. My compact walkers make an active life possible, and I would not want to be without them. Melanie: Having done a look online, it appears that there are several options and manufacturers of 3 wheel compact walkers. Send us your testimonials about devices you use to maintain your active life. https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/1623695561285-9THVKI3CUGCO2N66UYN4/Wallace+-+Aging+with+SCI.jpg Aging with a Disability - Aging and Mental Health Wallace: I was asked by Spinal Cord Injury Ontario (SCIO), if I would be interested in sharing my experience with aging and mental health. Sharing with peers is so important, so I like to share when I am able to do so. Using the videos and photos I supplied, Nancy Xia , an Information and Resource Specialist for SCIO, put together this great video called "Aging and Mental Health for People with Spinal Cord Injury (Wallace Upper's Story)". As always… we would love to hear from you and learn about your experiences. https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/1613784730665-SMJEUD04WAXMUA1FI8CM/weigh+scale.jpg Aging with a Disability - Weight Gain & Digestive Issues Contributor: Over the past few years I have gained a lot of weight. In addition, I have been struggling for a number of years with increasing gastroparesis (partial paralysis of the stomach). It has been brought to my attention that these are common issues for individuals who are aging with a long-term SCI. Has anyone else been dealing with the same experience? If so, what have you done about it? https://t6talk.com/accessible-living daily 0.75 2024-12-12 https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/516bd4a1-6583-4b95-acf0-4d459e1f3939/Accessible+Living_Accessibility_Why+living+with+a+Spinal+Cord+Injury+is+so+Hard+in+Public+Settings.jpg Accessible Living - Accessibility: Why living with a Spinal Cord Injury is so Hard in Public Settings Melanie: I struggled with where to post this. It could fit under more than one heading… but this is where it landed today. Kayley Lawrenz’ essay “Accessibility: Why living with a Spinal Cord Injury is so Hard in Public Settings”, featured on the Spinal Cord Injury Canada site, covers a lot of ground. These spaces are important for people to share their experiences so that others do not feel alone and so that the rest of us can educate ourselves, check our ableism and do better. SCI Canada: Kayley Lawrenz is a 25-year-old undergraduate psychology student at the University of Saskatchewan. Kayley identifies as a cisgender woman with she/her pronouns. She is a public speaker, research assistant, blogger for Spinal Cord Injury (SCI) Canada and aspires to become a clinical psychologist. She also volunteers for an organization dedicated to helping those who have experienced trauma and sexual assault, and as a peer mentor for people with new SCIs. A few of her accomplishments include awards for her public speaking, being asked to lead her own research study, and earning high enough grades to apply for honours in university. Kayley has been living with a C6 cervical SCI since the age of 16 and has a wide range of knowledge and experience regarding life with a disability. She has a passion for sharing her education and amplifying her voice, and others, to increase awareness and education on social issues for the betterment and equity of those most marginalized in society. Outside of work, she loves to do puzzles, play games, train with her adorable dog and go on adventures with family and friends. Education, psychology, public speaking, and equity are her main passions in life. https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/1a0cdc20-6301-4b70-959d-3a6f6e6afa71/Accessible+Living_The+Magnificent+Margaret+Conquest.jpg Accessible Living - The Magnificent Margaret Conquest Melanie: You know when you meet someone and they feel like a kindred spirit... a sister? Yep. That's how I felt when i met the magnificent Margaret Conquest. She speaks her mind and she lives her life without apology. She is generous with her time, is willing to share and actively supports community. You will find my chat with her on the Periods page. Once I go through some of our other recorded chats... there will be more Margaret on other pages. Brittney Neunzig is EmpoweredPara. She too supports community by sharing. Check out her website EmpoweredPara and her EmpoweredPara YouTube Page. Brittney started Mondays With Margaret and she's made a YouTube playlist. As of the day this was posted, there are 3 videos on the playlist: Quadriplegic Kitchen Tour, Meal Prep With Margaret/Quadriplegic Making Lunch and Quadriplegic Bathroom Tour, Transfers and Tips For Independence. To view this playlist, click HERE. SCI Alberta also created a video featuring Margaret called Margaret's House Modifications. To check this video out, click HERE. Thank you for sharing Margaret! I am striving to connect with a variety of people in order learn about our differences and varied experiences in this world. Representation matters. If you would like to connect with me... please do. I want to hear what's on your mind and in your heart. https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/0fe8f77b-9e8a-4a5b-99c3-67813fb21aa0/Accessible+Living_Building+a+Better+FreeWheel.jpg Accessible Living - Building a Better FreeWheel Melanie: There are so many great minds designing and building items to make the world an easier place to navigate. Check this one out! SCIBC: An inside look at how BCIT and ICORD researcher Dr. Jaimie Borisoff is taking one of the most popular wheelchair add-ons ever created to the next level. https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/7221471a-fdf2-4aeb-92c2-4de515b48848/Accessible+Living_AccessTO.jpg Accessible Living - AccessTO Melanie: AccessTO is a not for profit organization evaluating accessibility. To have a catalogue of places that have been vetted... to plan a day or night out and not have to look at google maps or make calls to clarify what a location means by accessible? Wow. Wish I could click my heels together 3 times and make this available in every city. It does not bridge all the gaps and they acknowledge this. How do you eat an elephant? AccessTO: An organization that was created after a group of health professionals felt that there was a need for more in-depth reviews of the physical environments in our community. Until a more universal approach to construction is implemented in Ontario we feel reliable, verified and quantitative information about accessible spaces is of great importance. Being social can be a challenge for anyone, especially as we emerge from the Covid-19 global pandemic. People with physical disabilities often face barriers as they try partake in social activities others take for granted. We hope that you will come to trust AccessTO when planning your events and social outings and that by seeing out logo in a restaurant window you it will remove any fear or anxiety of visiting that space. We understand that accessible means something different for every individual. We will continue to try and have a diverse pool of contributors posting to the site and when furthering the development of our criteria list that we use when writing our reviews. https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/2829ad22-0b5f-4a96-909a-99f899abc219/Accessible+Living_AODA+Requirements+for+Healthcare+Providers.jpg Accessible Living - AODA Requirements for Healthcare Providers Melanie: The people in charge of healthcare facilities are supposed to be following the 5 standards currently in place. So why are there so many people not able to access pelvic exams because the examination tables are inaccessible? What health ramificationas has this caused? What is the cost? This is just ONE example. There is so much to fix and make right. A July 22, 2019 post by Greg Thomson: Currently, the AODA only has five standards that organizations must follow to become more accessible to Ontarians with disabilities. Committees are in the process of developing more standards to prevent or remove accessibility barriers that current standards do not address. One of the standards that does not exist yet is a healthcare standard. A committee has been created to make recommendations about what a healthcare standard should include. In the meantime, however, there are still AODA requirements for healthcare providers to follow. https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/c4764975-0893-4368-b69a-a8349bf0b9f1/Acessible+Living_SCIBC+A+Matter+of+Style_Adaptive+Clothing+Option+in+BC.jpg Accessible Living - SCIBC “A Matter of Style: Adaptive Clothing Option in BC” Melanie: Here is some information on adaptive clothing. Derek Jezewsky is a Canadian distributor for Kinetic Balance. Some very interesting products. I would like to balance this post with other adaptive clothing manufacturers with a more accessible price point. Variety in style and price is important. Call Out: If you know anyone in the adaptive clothing business, let us know! Including those people designing and creating out of their own homes! SCI BC: Coquitlam’s Derek Jezewsky has always enjoyed dressing and looking smart. With his new business, he’s overjoyed to be helping other peers discover—or rediscover—their own fashion sense. https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/69289931-c919-4ec1-8597-2e927ceed4e8/Accessible+Living_How+to+use+the+Telestik.jpg Accessible Living - How to use the TeleStik Melanie: We have 3 of the "grabbers" around the house, but this looks like it could be a good addition. Have you ever used one of these? What tools do you have around the house? TeleStik: Allows you to retrieve hard-to-reach items without requiring significant grip strength or dexterity. And it gets in tighter places than other reachers because of its sleek design and clever sticking mechanisms. If you have experience with this product, let us know! https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/4d7b2b62-55a1-40f7-9ceb-bfaaf6c57ecd/Frog+leg+Mobility_Leg+Lasso.jpg Accessible Living - Frog Leg Mobility Melanie: Our friend Phil sent us the link to Frog Leg Mobility so we could share it with everyone. Thanks Phil! Click on the link at the bottom to visit their site and watch a video on how the "lasso" can be used to "wrangle" your legs. Frog Leg Mobility: LegLasso™ is lightweight and durable, allowing users to reposition their legs when they spasm or become uncomfortable. LegLasso™ can be used with ease while lying down, eliminating the need to sit up or thrash around in order to roll over. LegLasso™ was originally designed for spinal cord injury patients, but are effective for anyone with limited lower body or leg mobility (e.g. those living with multiple sclerosis, muscular dystrophy, etc). LegLasso™ is great for people that worry about developing bedsores and can give people with impaired use of their hands the chance to be more independent. If you have experience with this product, let us know! https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/dadb0fc9-5e87-4d7c-9049-ea97a4c8e175/Dwell_Massive+Metal+Caterpillar.jpg Accessible Living - Dwell: Caterpillar Cost-Effective Apartments Melanie: Wallace and I love quonset huts. We have considered getting one and building an accessible home. We have since decided to renovate our current space instead. But the beauty of the quonset style building still calls to us. My sister Meagan sent us a link to this article... and I think this is really something to look at when it comes to access and cost. Check out this funky design by clicking on the link below. Dwell: A Massive Metal “Caterpillar” Brings Eight Cost-Effective Apartments to Detroit. Send us your ideas for accessible living... we'd love to hear from you. https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/35a591a0-9742-411d-ac51-31251fd02497/Brantwood+Community+Services_HubScrub+and+Seating+Clinic.jpg Accessible Living - Brantwood Community Services: HubScrub and Seating Clinic Melanie: I Have lived in the Brantford area for most of my life. As a teenager I worked and volunteered for some amazing organizations in the community like Lansdowne Children's Centre and Jayne Laycock School. At that time, Brantwood Community Services was known as Brantwood Residential Development Centre. To learn more about their fascinating history, click HERE. The ability to adapt and change with the times is vital… for us as individuals and for organizations like Brantwood. They provide an amazing service to our community. Their Mission Statement is "Brantwood empowers people of all abilities to have a life of their choosing". They also provide Mobility Services to the public by offering a Seating Clinic and The HubScrub. To view their page, click HERE. To access their services, call them directly at (519) 753-2658 x 146. The HubScrub is AMAZING, it will clean and sanitize your mobility devices. I was able to find a YouTube video to show how these machines work and added a link at the bottom of this post. When they first purchased this machine, it became part of the skills development and training program. The clients accessing the services of Brantwood could be trained on the operation on the HubScrub. Unfortunately, funding comes and goes for programs like this, but the service is still available for a very reasonable fee. By utilizing their Mobility Services, you get what you need and you support an important community organization. Sometimes we can wonder how much impact we can have when there is so much going on in the world that is beyond our control. That's when it's helpful to pull back and look at what and who is directly around you. By supporting organizations in your community, you are creating a ripple effect that can have a broader impact. We can also influence others and encourage them to do what they can as well. Tell us about your local organization’s mobility services so we can share the resource with everyone. https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/0386f93c-3e5c-46df-8124-20eb2fb430a6/HandiCup.jpg Accessible Living - HandiCup Melanie: Our friend Pip sent us the link to this product called the HandiCup. Pip swears by it. Wallace has not tried it yet as it will not work with his current chair. When he finally gets his new one, we will revisit this. It is a very versatile holder and was created by Chris Stigas - who uses a chair. To read about his story, click HERE. We love promoting useful products and resources, but it's even better when we can support people with disabilities who create these products and resources. Check out HandiCup and the reviews by clicking on the link below. HandiCup: HandiCup™️ is a wheelchair cup holder attachment that works for people with full or limited hand function, so that they can successfully and independently access a beverage on the go! The design is thermos and coffee cup friendly, with an adjustable bottom that attaches to all power and manual chairs, no tools required! Simply slide the handle under the seat cushion and you’re all done! It’s 100% Canadian designed and made with patent pending in Canada. https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/0e2f96d1-37ab-4764-b90b-cf066bb0b23c/From+Where+I+Sit+-+Busting+Five+Myths+of+Universal+Design+-+Brad+McCannell.jpg Accessible Living - From Where I Sit: Busting Five Myths of Universal Design Melanie: I was looking for articles on accessible housing and came across this article on Universal Design by Brad McCannell (June 8, 2018). He does a great job at debunking the myths associated with inclusive Universal Design. It seems so logical, doesn't it? Design and build for ALL abilities. The sad fact is that attitudinal barriers remain... Brad states: People with disabilities can only achieve full and equal citizenship if everyone can take advantage all aspects of the built environment. ‘Access’ is being able to get into an arena to watch a game - inclusion is being able to get into the arena and play in the game. Inclusion is the natural outcome of meaningful access. How true… enjoy the article! https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/1613784111215-EGHQ82DRQATE05B8H1QK/DIY+hand+crank+table.jpg Accessible Living - DIY Hand Crank Table Wallace: We were looking for a table for my hand crank, but what’s out there to buy was expensive and did not match our aesthetic. Melanie and I designed and built this DIY hand crank table out of plywood and metal pipe. We can exercise together. I go on my hand crank and she uses the treadmill that is tucked under the couch. https://t6talk.com/dating daily 0.75 2023-10-04 https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/fb706743-5aa1-4c77-b153-2469e736b807/Five+Women.jpg Dating - CBC News: 5 women share their stories about life and dating with a disability (written by Sarah Harrower) Wallace & Melanie: We are always looking for stories on dating. These women talk about self-acceptance, vital conversations, agency and voice, being you, the importance of communication and that we are all on an ongoing journey. Let's keep the conversation going people! We would love to hear about your dating experiences. Read the full article by clicking on the link below. Sarah Harrower: Dating is hard. Dating as a young woman with a disability comes with its own challenges.There are as many different experiences as there are people living with disabilities. Some good, some bad. But within the community, between friends, and now, even within larger groups, conversations about romance and sexuality are happening. https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/1630605069237-RHCNAJN0MK6S0NMABZWL/VARP+-+ILCWR.jpg Dating - Relationships and Technology AKA Sexuality Series: The Evolution of Dating (from ILCWR’s Disability and Sexuality Summer Webinar Series) Melanie: Sheri Roberts is a Community Resource Coordinator with ILCWR (check out their website HERE). She led the 3rd session in their Summer Webinar Series and it is easy to see how passionate she is about her work. Sheri discussed online dating apps, getting to know people and strategies for finding common ground with someone else. She also brought up the important topic of "disclosure" - when is the best time to disclose your disability (a very personal choice). She also talked about safety and what we should keep in mind during the process. What really appeals to me about these ILCWR sessions is the open dialogue with the participants - GREAT SHARING. In addition... a shout out to Megan of ILCWR - she is their VARP Coordinator - thanks Megan! https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/1628889371650-WC4FAK2XD5VVL0T9Z7C5/The+Understanding+of+Disability+and+the+Disability+of+Understanding_Kalyani+Khona.jpg Dating - Kevin's TEDx Picks Part 2 Melanie: Kevin Munn is a Peer Support Worker for the Victoria Disability Resource Centre (VDRC). He sent us some great links to TEDx videos that we added to the Sex and Sexuality page, which is why we are calling this post “Part 2”. Thank you for the link Kevin! "The Understanding of Disability and the Disability of Understanding" presented by Kalyani Khona (TEDxGateway). Length: 9 minutes. Kalyani observed the lack of dating platforms for people with disabilities in India and was determined to change this. The more inclusive our world is, the richer we ALL are. She started up Inclov, an online dating app for people with disabilities. After Inclov was up and running, she recognized the need to create physical spaces for people to meet in person to socialize. "Social Spaces gives individuals a chance to get out of their comfort zone and meet new people in an inclusive environment, have fun and maybe meet The One in the process." Unfortunately, Inclov had to close its doors on January 20th, 2020 due to a lack of funding. Kalyani had the following to say... "Looking back, we feel proud that Inclov has managed to become a global case study with an award of Top 50 Global Innovative Practices by Zero Project at The United Nations, bring together a community of 60,000 people across India, enable connections and conversations between 20,000 people, host 100+ inclusive and accessible meetups across 40 cities in India including nightlife meetups, create an inclusive eco-system by partnering with brands like Microsoft, ITC, Cox & Kings and many more, (AND) bring many happy couples together. We hope you carry the mindset of the right to equality as well as freedom for all and keep the spirit of Inclov alive in your heart forever." The possibility of failure should not stop us from following our dreams to make the world a better, more inclusive place. “Change never happens at the pace we think it should. It happens over years of people joining together, strategizing, sharing, and pulling all the levers they possibly can. Gradually, excruciatingly slowly, things start to happen, and then suddenly, seemingly out of the blue, something will tip.” Judith Heumann Ever forward people! https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/1614564019610-799OMP25WU8K5SHYOVDK/Love+Yourself.jpg Dating - Knowing Yourself Wallace & Melanie: Both of us know couples who met when they were teenagers and are as in love today as they were 30 years ago. These stories exist, but they are rare. Most of us need more practice before we find the right fit. We use the word “practice” because we feel this is a good way to look at it. It’s a practice. Trial and error. When we are learning how to do something new, we practice the skill, knowing we may fail. When we fail we readjust our approach and try again. How is it any different for dating? We need to practice it, to fail at it and to keep going. But let’s take a step back from dating for a moment and look inward. It starts with “you” (meaning each and every one of us). We believe that “you” must start by knowing yourself, knowing what you want, knowing what you have to offer and… knowing from your core that you are indeed worthy of love. “I am worthy of love. I know who I am. I know what I have to offer and I will not compromise my fundamental principles”. How can we know what we want out of a relationship, what we need from our partner, if we don’t have an understanding of who we are as an individual? It all begins with you loving you. https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/1614283830165-6D8CYGXQIHY4OKCI0HAR/dating+and+Covid.jpg Dating - Finding Love in the Age of Covid Melanie & Wallace: If you’ve entered into the dating scene during Covid, we want to hear about it! Please send us an email. https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/1614203112586-MRSO0AX6RAA15TKE2XFJ/Randy+Upper+and+Melanie+Earle+Dating.jpg Dating - Adventures With Online Dating Melanie & Wallace: We have been asked about how we met, and since we are asking you to share your story, we felt it was important for us to get things started. Wallace: One of the main reasons why I had developed a dislike for dating sites, was that it was clear to me that my honesty in talking about my disability and being forthcoming about it, had a negative impact on the replies I received. Early on in my post injury dating life, I learned, through trial and error, that it is best to be as honest as possible. I would much rather receive fewer responses with people knowing the truth, as opposed to increasing the interest by not being transparent. It only delays the inevitable. However, when I first started dating after sustaining my SCI 32 years ago, I was much more hesitant to talk about such things like how my bladder and bowels work, where my level of sensation is, what muscles I can control, spasms etc. I was worried that sharing such information would just scare people off and not give them a chance to really get to know me before they could get freaked out by any aspect of my SCI. In my early dating experiences with this mindset, I realized that I was investing myself and my emotions in another person while carrying the weight of my truth. In retrospect, it was damaging and unfair to myself and to the other person. There is weight in the saying “truth is the best policy”. After some heartbreak, I realized that I wanted someone who wanted me for all that I am right from the start. What really helped me was talking to peers and listening to their stories of successful relationships. In time they led me to realize that it is more than possible to find a partner who loves me for all that I am. It was with this confidence that I moved forward. I have had significant relationships and flings that were all started with the truth being on the table. My partners noted that part of their attraction to me was my honesty and confidence. The relationships did not stand the test of time, but they did not end because of my SCI. The truth is, finding a long-lasting functional relationship is not an easy task for anyone. Melanie & Wallace: That brings us to how we met. We were both at a point where we were happy and satisfied with our lives as single parents of adult children. Although we both wanted to find our “partner in crime” we did not want a relationship for the sake of having a relationship. We were ready to lay it all on the table. Despite both of us having reservations and a poor history of online dating sites, we chose to give it one last kick at the can. Both of us had filled out our profiles with great care and detail. It is a very vulnerable feeling to put yourself out there like that, but we both felt openness and honesty were paramount. We cannot stress enough that trial and ERROR is really the only way to figure out what works best for you with regards to communicating. You have to accept that there could be a lot of no’s before you get to a yes, and not all yes’s will work out in the long term. Wallace: When fillings out my profile, my SCI was not hidden, but it was not the focal point. All the facts were there in plain language, however I focused on my accomplishments and abilities. My SCI does not define me, but it is a part of who I am. Melanie: When I read Wallace’s profile I was attracted to his accomplishments and interests (AND... I thought he was extremely attractive). His education, dedication to social work and justice was very appealing to me. We had many common interests and it seemed as though we spoke the same language. Knowing that he had an SCI and lived his life fully told me that he was a person who thrives in the face of adversity, and that is what I was looking for. I found all aspects of him to be attractive. I am convinced that this is in part due to the work I did on my own. Knowing who I am and what I want. I had questions about his SCI, but it was not the focal point for me. Very quickly we determined that we would talk on the phone and skip messaging through the site as it was limiting and slow. Our first conversation was over 3 hours long. We met in person within a few weeks. During our long phone conversations, Wallace was very candid about the way his body works. We got into even more detail after we met. I found everything to be so interesting. None of what he talked about made him less attractive, it just helped me to understand him more fully. It was not just him laying everything on the table, I did too. We did not hold back on expressing what we wanted or did not want. We both wanted to know ASAP if there were any deal breakers. Life is too short so we opened up very quickly and put in motion how we would communicate with one another moving forward. Wallace: Although what I am sharing is my personal experience with dating and honesty, I have learned over the past 32 years through sharing with peers that my experience is most common. Not sharing truths is the deal breaker for me. https://t6talk.com/abc-of-sci daily 0.75 2022-04-04 https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/b4835fe6-7e67-44d4-bf15-ac4ec80e6cc9/Taking+a+Sitting+Stand+-+John+Loeppky.jpg ABC of SCI - Taking a Sitting Stand: The Spoon Theory Melanie: There are many articles and videos explaining The Spoon Theory. This is just one of them - but it's a good one. The video at the beginning tells it all. John Loeppky does a stellar job. This is important for EVERYONE to consider. It can help you to explain your energy levels to others AND it can help challenge ableist thinking. When we have a greater understanding of what others may be going through we become better friends, partners and allies. I have decided to include this on the following pages: ABC of SCI, Mental Health and Physical Health. John Loeppky: It's all too easy to exclude disabled people because of a sense of inconvenience, but that can leave us feeling unwanted. https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/ccfd7319-e08f-4575-97bc-0674bc33e700/Hydrocephalus+Canada.jpg ABC of SCI - Spina Bifida and Hydrocephalus Melanie: Not all spinal cord injuries are acquired, some people are born with one. Spina Bifida is a type of spinal cord injury that people can be born with. I was looking for a site that would give us an overview of Spina Bifida and Hydrocephalus and came across Hydrocephalus Canada. I sent the link to Val, who is part of the SCI community and has both Spina Bifida and Hydrocephalus. She took a look and said it was "an excellent jumping off point for people looking for information". We hope this is helpful. If you have additional resources that you feel would be helpful, please let us know. https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/1617050220346-BCPQPZ2XHC5RIE6IXLPG/SCE+SCI+Handout.jpg ABC of SCI - SCE Handout “Spinal Cord Injury” Wallace & Melanie: Spinal Cord Essentials has some great handouts. The “Spinal Cord Injury” document can be downloaded and answers some IMPORTANT questions on the basics. What is the Spine? What is the Spinal Cord? What is a Spinal Cord Injury? What is Your Level Injury? How Severe is Your Injury? This handout provides a basic but thorough overview of SCI and could be a perfect place to start. It is clear and concise, using plain language and informative diagrams (as shown here). The only issue we had was with The American Spinal Injury Association’s (ASIA) impairment scale. Level “E” is labelled as “Normal” for full movement and feeling. We suggest that “Unimpaired” would be a more appropriate and inclusive description. To be clear, our “beef” is not with SCE, but the ASIA. https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/1634334763673-XM36DS4S5CEJUOYRVLRG/SCIRE+Community.jpg ABC of SCI - SCIRE Community Wallace & Melanie: A great resource for people living with a SCI, and their family members, friends, or caregivers. In operation since 2017, SCIRE Community has developed a great deal of current SCI evidence and resources written in everyday language because we believe that the best scientific evidence should be accessible to everyone." Check out this website! For those of you who want academic language, you can link to SCIRE Professional from the top of the SCIRE Community site. https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/1617058996522-S7WWXHNNS0FO4YHLX5UQ/SCIRE+Community+Basics.jpg ABC of SCI - SCIRE Community “Spinal Cord Injury Basics” Wallace & Melanie: This link will take you directly to the SCIRE Community page on Spinal Cord Injury Basics. You can download it as a printable pdf or you can review the material directly on the site by expanding the topics you are interested in reading about. The basics provide us with a solid foundation to build on. The more we know, the better equipped we are to live our lives fully… moving beyond surviving an SCI to thriving with an SCI. Again… The American Spinal Injury Association’s (ASIA) impairment scale is referenced. Level “E” is labelled as “Normal” for full movement and feeling. We suggest that “Unimpaired” would be a more appropriate and inclusive description. Again, our “beef” is not with SCIRE, but the ASIA. https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/1634336849749-GBM4X4K5JE8ETBF1XCTS/Spinal+Cord+Essentials.jpg ABC of SCI - Spinal Cord Essentials (SCE) Wallace & Melanie: Having clear and accurate information is vital when it comes to our overall health and well-being. Sometimes the information available to us is dry or overly technical - boring and confusing. Spinal Cord Essentials (SCE) provides some great resources for everyone within the spinal cord injury community, especially for those who are newly learning how to live and thrive with an SCI. Their resources are engaging and are provided in plain language with multiple languages available. Sandra Mills is the Patient and Family Educator at Toronto Rehab's Lyndhurst Centre. She has devoted her career to providing superior and current educational tools/information to those with an SCI as well as their family, friends and support people. We spoke with Sandra last night and she informed us that they will be adding some new documents for download soon! One of them is on Body Mapping. We will add a link to the Sexuality page when it is available. When you are ready, we encourage you to explore what they have to offer. https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/1634335150427-M59SFX88GNXJ7F44NCIZ/SCIBC+Logo.jpg ABC of SCI - Spinal Cord Injury BC (SCIBC) Wallace & Melanie: We had the good fortune of meeting some amazing people at SCIBC when we were in Vancouver the last time. Another great resource! They have an exceptional wealth of knowledge on all things related to sexual health and so much more. Well worth a virtual visit! https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/1634335521498-G4W12UQBSJ3GFE9OD02E/3.0+Links+SCIO+Logo+-+Copy.jpg ABC of SCI - Spinal Cord Injury Ontario (SCIO) Wallace & Melanie: If you live in Ontario and you are looking for a wealth of resources, this is a great place to start. They have a great peer support network and they offer webinars on a lot of different topics. They also have a venue for selling and buying equipment, including accessible vehicles. There are regional offices, but they also offer a lot of online content - making it even more accessible https://t6talk.com/our-stories daily 0.75 2024-05-24 https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/e7710972-b4e5-4103-bb72-5edf7b9cbf31/Our+Stories_t6talk+podcast+with+TG+from+Not+Your+Average+GOAT.jpg Our Stories - Fearlessly Breaking Chains from Sexuality & Disability, to Femininity & Beyond. Melanie & Wallace: After listening to our interview with Chad Bouton from The Unsyted Radio (posted on our Sexual Health page), Teisha reached out to us and asked to record a conversation with us for her podcast Not Your Average GOAT. We enjoyed speaking with her so much that we didn't realize how much time had passed. Teisha also believes in the power of sharing our stories. We encourage you to check out her podcast. Learn more about Teisha by visiting her site CLICK HERE. Teisha Gillespie (She/Her): Celebrating all the shapes, sizes and colors of diversity as well as adversity, while inspiring the world through authentic conversations that are both meaningful and relatable. Each episode, Teisha deep-dives into the extraordinary journey of an “average,” yet super incredible person. She and her guests engage in critical dialogue that seeks to both elevate the beauty of different lived experiences while simultaneously challenging and dismantling deeply-engrained societal stigma and prejudice. Part 1 - Episode 24: Melanie & Wallace (t6talk) Fearlessly Breaking Chains from Sexuality & Disability, to Femininity & Beyond, CLICK HERE. Part 2 - Episode 25: Melanie & Wallace (t6talk) Fearlessly Breaking Chains from Sexuality & Disability, to Femininity & Beyond, CLICK HERE. https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/7db13ca6-5446-47bb-a3f1-6f7899e79430/Our+Stories_Act+of+God_Short+Film.jpg Our Stories - A Tale of Stubbornness and Disability, in “Act of God”, an artful short film asks why it’s so hard to offer help—and to accept it. Melanie: My sister sent me a link to this article and short film. I wanted to share it here. I think it would be a great group discussion piece. Not the least of which would be the Jerry Lewis' 2001 quote "Pity? If you don't want to be pitied because you're a cripple in a wheelchair? Stay in your house!" displayed across the screen as the film starts. After Jerry Lewis died, Chicago writer and disability rights activist Mike Ervin wrote a short article about Lewis, this quote, and the harm done. Click here to read the article. Spencer Cook's comment "The fact that someone with my disability can live in their community and meaningfully contribute to it is a really beautiful thing that I wish our country were more proud of" is an important one to consider. It also made me wonder about how we view and define what it means to contribute and how we are valued based on what we can give back. What if we cannot "produce" or "contribute" in a conventional way? Are we less than? Are we undeserving of the help we need? Most of us have experienced the difficulty of asking for help, or accepting help, and yet we can find such pleasure in helping others. Writer Douglas Watson from The New Yorker: In the course of our Q. & A., I asked Cook and Smith what question I should be asking them that I wasn’t thinking of. Cook’s reply was especially illuminating. The question to ask, he wrote, is: “Who pays for Stuart’s (and my) care? And the answer is: Medicaid, the program that many politicians dream of cutting into oblivion. Though it’s certainly not perfect, I wouldn’t be able to live without it. The fact that someone with my disability can live in their community and meaningfully contribute to it is a really beautiful thing that I wish our country were more proud of.” https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/81c78dd7-5023-4e19-a9be-a1b964f55c8f/Our+Stories_Wendy+Raposo.jpg Our Stories - Wendy Raposo Remembered Sunday, November 16th, 1975 to Sunday, July 16th, 2023 Wallace & Melanie: We met Wendy through our "Staying Well Together" peer connection we do with Independent Living Waterloo Region (ILWR). We were shocked when we received the call from Sheri about Wendy's passing. We all grieve and express our grief in different ways, but we can all agree that her absence is keenly felt, and we all wish she were still around to hang out with us. Wallace and I were drawn to her pragmatic approach and her sharp wit. Selfishly we will miss her because we still had so much more to learn from Wendy. Email us directly with your memories - t6talk@gmail.com Obituary Reads: Passed away peacefully, surrounded by family at St. Mary's Hospital on Sunday, July 16, 2023 at the age of 47. Beloved daughter of Lina and Guilherme Raposo. Loving sister of Danny and his wife Carla. Dear aunt and godmother of Olivia. She will be sadly missed by her extended family and many friends. Wendy loved life, music, games, dolphins and family gatherings. James: Wendy had character and she spoke up when things were going on. She remained even-keeled in her responses to issues. Alanna: When I'd come on for any group and would see Wendy join, I would be relieved because when I first joined I was uneasy and I learned from Wendy. If I was having a hard day and heard her voice? It helped. Phillip Raney: I write this with my deepest condolences, I share a few thoughts on the lose of a friend. Where do I start. I came into the ILW group apparently 2 years ago now. I remember Wendy’s smiling face when she greeted me in the very first meeting I attended. Over this time I’ve admired Wendy’s grace and sense of humour. In our meetings and fun times with the group it was her brightest smile that made me always feel so welcomed in the group. In the last year I’ve been serving on the ILW Family Council with Wendy. Wendy has a mild lovey nature, with a pit bull lying underneath. I explain what I mean, there were times during our T6 Talk meetings when we had the opportunity to share what was on our minds and hearts. One day there not long back Wendy was sharing her frustration with the way she needed care for her Ventilator. I saw a gentle loving person stand up for herself and the care she needed. I was amazed by her way Wendy did this, not being angry but determination to receive the care she needed. I think everyone present there was revved up after she spoke wanting to come to her aid. In two short years of knowing Wendy she wasn’t shy to share her journey with us, it brought understanding what a little what it must have been like to be living with a ventilator. Myself being an incomplete paraplegic don’t have the same challenges as Wendy. I found myself learning from her many times, she had a wisdom far beyond her years and such a gentle way of getting her point across. I will always remember her smiling face, it’s ingrained in my memory forever. She also taught me so much just by listening to her during our Family Council meetings. Her way of getting her point across was one of determination, and not with a mean word would come from her mouth. My life is so much richer for knowing Wendy, even in two short years I’ve been so blessed to call her my friend. To Wendy’s family and closest friends, celebrate Wendy’s memory with a huge smile on your face knowing she impacted my life and so many others in a beautiful positive way. I mourn with you, but will also smile when I remember Wendy. Erica: I am heartbroken that I will not have the opportunity to hear from her lips all she managed to accomplish, all she overcame and still managed to take some of my pain away with just the glitter of her beautiful eyes. The last words she spoke to me were, "you deserve better and your worth more than you’ve been given", and I will cherish and honour those blessings. https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/8ac07b87-664b-42a9-a115-8f7dd5af4d62/Our+Stories_Representing.jpg Our Stories - Representing Wallace & Melanie: When we opened the Spring 2023 copy of SCIO's Community magazine, we found 3 of our friends featured in it! We posted 2 under Mental Health and 1 under Our Stories. "Representing" is the third article we came across and it features Sheri Roberts. In this article, Sheri talks about what she has been involved in since sustaining a SCI 25 years ago... most recently becoming Cambridge's newly elected City Councilor! Representation matters!! She has always been SCI/Disability Community focused. We love working with Sheri in her role as Community Resource Coordinator for Independent Living Waterloo Region. We have met some amazing people through her. Congratulations Sheri! https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/fe80f5c3-98ca-4d02-8de7-edaa810a52f4/Re-Inventing+The+Wheel.jpg Our Stories Re-Inventing The Wheel Melanie: Peer Support is so POWERFUL. Having the support of people who "get it" is invaluable, improving our mental health and overall wellbeing. We have not had the chance to watch this documentary yet, but it's on the list! If you have a link to share or a story to tell... contact us. Winston Szeto, a writer for CBC, discusses the story of Dan McLean and members of Accessible Okanagan as told in the documentary Re-inventing the Wheel. Winston: In the documentary, McLean says he used to think of himself as being self-sufficient and not needing help from anybody.But he gained a new perspective after spending time with the support group. "I learned a lot from these guys. I was able to learn things just from talking to them within seconds. It would take me years to figure out," McLean said. "Like getting the chair in my car now, it's still a skill I'm working on, but they were able to give me different pointers." https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/1627085811942-IBUJ9A0XF8BCAM653UBJ/Aunt+Barb+Uncle+Dale+and+Wallace.jpg Our Stories To My Aunt Barb and Uncle Dale I cannot imagine what the trajectory of my life would have been had it not been for two remarkable people. My Aunt Barb and Uncle Dale were the positive parental influence that I needed. When they read this, I want them to read it several times and internalize what I am saying to them. “Aunt Barb and Uncle Dale… you were always there for me… as a small child, as I navigated through my troubled teen years, and as a young adult, both pre and post injury and your love made a positive impact on my life. Thank you.” My Aunt Barb and Uncle Dale always had my back and I love them very much. I always enjoyed going to their house. I felt loved and I felt safe. I lived with them for 6 or 8 months when I was 5. When it was time for me to go home, I cried and begged them to let me stay. Looking back, I can only imagine how hard it was for them to let me go and I know this weighs heavy in their hearts. They have both expressed to me that they felt they did me wrong by not fighting to keep me with them full time. “Aunt Barb and Uncle Dale… all I’ve been through has made me the person I am today. You were both a positive influence. Let that moment go. Look at me… I’m thriving… and you played a major part in that. Thank you.” I remember more positive memories and stories during the time I spent with my aunt and uncle than any other period in my childhood. I remember going to the Lions Club parade and to Lions Club festivals with them. When I was about 12, there was a time I stayed overnight at their house, and my uncle took me to play hockey the next day. I can remember trying so hard to impress him because it meant so much to me that he was proud of me. My aunt was always loving and maternal with me – making sure I was taken care of as if I were her biological son. My Uncle Dale volunteered his time to go with me on a school tobogganing trip. I remember being in the basement with him while he was waxing the toboggan. We went out to the hill and Uncle Dale went down first. It was reminiscent of National Lampoon’s Christmas Vacation when Clark Griswold took off like a rocket - my Uncle Dale went so far and so fast he crashed through a snow fence – HILARIOUS. I remember being up one night at their house and I kept hearing things. It sounded like someone walking up and down the hallway and I thought there was a monster. I kept going into my aunt and uncle’s room stating, “There’s a monster in the house!” They would assure me that there were no monsters and that it was okay to go to sleep. They tried to soothe me and tuck me back into bed. The next day, they heard the noise and went down into the basement to investigate. They found a bird had gotten in through the chimney and was trapped. I remember my uncle catching it with a fishing net and letting it go outside. There was one time I was sick with the flu. I can remember how bad I felt and how well my Aunt Barb took care of me. My aunt’s sister came over and sat in the bedroom with me. She had brought her portable record player and stack of 45s over and we listened to music together. I loved it so much she gave me her record player and the 45s to take home (and were subsequently taken away from me). When I rowed, they were always at my races cheering me on. “Aunt Barb and Uncle Dale… thank you for all of the great memories, for being present and for loving me so well.” As much as I would get into scuffles and fights with people, I never instigated it – I would defend myself and fight back. Even then, it really bothered me when I knew I had hurt someone else – even if they had hurt me first. I believe I learned empathy from my aunt and uncle. Once I had my driver’s license I spent more time with them – I chose to be with them. Efforts were made to drive a wedge between me and my aunt and uncle – but it didn’t work. It was my uncle Dale and my cousin Wayne who drove me to university my first year. After the accident, they stood by me 100% and came to the hospital every day during the critical stage. Once I was stable, they visited me frequently. I knew I could rely on them. My uncle would come and pick me up from the rehab hospital and bring me home. I loved that time with him. I remember my cousin Ryan offering up his room to me. They have always been loving and protective of me. I love them and care deeply for them, but there have been long periods of time when I’ve not kept in touch. It took me a long time to figure out why. “Aunt Barb and Uncle Dale… I’m sorry for the times I’ve not been in touch. It is difficult for me to see you and not re-live traumatic events from my life. It is even more difficult when you discuss your memories of these traumatic events. I feel like I’m being thrown backwards, losing my balance. I now realize that you both experienced secondary traumas. You felt the traumas of my youth. You felt the trauma of my spinal cord injury. Where were your supports? Who helped you? It must have been difficult for you both. We are ALL older and wiser and better equipped. You have never let me down. You’ve never done me wrong. You’ve done nothing but be there for me. Know that I love you and I look forward to making NEW memories with you. Thank you for everything you’ve done for me. Love Randy (aka Wallace)” January 11, 2022: Rest in peace Uncle Dale… March 14, 1948 to January 9, 2022… you will be missed https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/1621360592318-K1IDCGS3LEPYRS07QNTD/Ben+Clark.jpg Our Stories Redefining Me… The Story of Ben Clark Life is made of moments, but we are not defined by them, but how we react to them. Redefining Me is the story of Ben Clark and how his life didn't turn out the way it was supposed to be, instead of letting it define him he found a new path, one of happiness https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/1619805836442-2GXM9LNM3RZO1KB8WVW2/Phil.jpg Our Stories - Hello… my name is Phil Hello, my name is Phil and I’ve been living with a spinal disease for a many years now. When I was first diagnosed with a deteriorating spinal disease and told that I wouldn’t be able to return to my career in law enforcement, I found this was very devastating from my standpoint. I was rather crushed by this news, I knew life as it was would never be the same, it was going to take a very big turn. I’m a very determined headstrong person and I wanted to tackle this head on with the help of my wife and children. The disease took its toll and I had to have four lumbar/sacral surgeries, two of them being fusions, one fusion with bone from my hip and the other with rods and screws and bone from my other hip. The disease also is narrowing my spinal canal which in turn is placing pressure on spinal cord. Life didn’t go quite as I wanted it to go and there was a lot of set backs and hospital stays over the years. I still have a very positive outlook on life and always will have, what doesn’t take us down makes us stronger. A few years back I started having symptoms of numbness in my fingers and hands and a lot of pain in my arms. My surgeon ordered an MRI, it showed multiple disc herniations in my neck. I was told by my surgeon that I needed neck surgery, and without the surgery I’d be paralyzed from my chest down. Needless to say I had a surgery named a Corpectomy, he removed three discs and two vertebrae and replaced it with donor bone, and fused my neck with rods and screws. Turning my neck doesn’t happen any longer very well, and have swallowing problems, but the trade off was well worth it. Back in the late fall of 2020 while surfing on the Spinal Cord Injury Ontario website, I found a link to advertisement for a course called Wellbeing for Persons with Spinal Cord Injuries. I immediately followed the link to take the survey to see if I qualify for the course. Once accepted into the course, I dug right into the lessons with gusto. The course came at a perfect time for me. It’s helped me make many changes in my life, helping me approach my daily activities with a positive outlook, and helped me stay clam in stressful situations. And a overall change the way I treat others. This course couldn’t have come at a better time in my life. I know the Wellbeing for Persons Spinal Cord Injury will give other people the chance to change their lives in a positive constructive way as it has helped me immensely. To get around I use a power wheelchair, I do have a four legged helper, he’s the most wonderful service dog I could have ever received. He’s a purebred Labrador retriever with mostly red coat, his name is Rutger he came from the Lion Foundation of Canada DogGuides in Oakville Ontario. A little about me I’ve been happily married to for 35 years to my best friend Janna she is my helpmate and caregiver. We raised two beautiful children Katrina 31 and Luke 29, they’re both married and Luke and his wife have given us two wonderful grandchildren Jack 8 years and Ellie 2 years who bring us great joy. https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/1618166780481-X3SDED4SRA6Z2IETGUNF/Randy+Upper+2017.jpeg Our Stories - Wallace’s Journey Growing up in St. Catharines Ontario, I was a very hyperactive child. By grade 7 and 8, I was hanging out with a bad crowd; participating in a lot of risky behaviours that were taking me down a bad path. I was taking and selling drugs, stealing bicycles and had been written off in terms of my ability to do anything academically. Thankfully, I gravitated towards sports – keeping me busy and out of trouble. Participating in sports was a way for me to deal with a lot of the unhappiness, frustration and pent-up energy that I had. It was in high school where I first became involved with rowing, which led me to meeting the people who are still my closest friends today. A good, solid group of guys who I modelled my behaviour after, enabling me to discover what I was capable of and taking me down a much better path. The sport of rowing, and the coaches I had, helped me to tap into my disciplined side and gave me a healthy way to burn off all the energy I had. In the summer of 1988, I worked at General Motors, which enabled me to be financially independent, pay for my school expenses and for the motorcycle I had always wanted. In the fall of 1988, I achieved a major goal, rowing varsity lightweight for Brock University. Life was great, I was on top of the world. I was rowing, I was financially secure, and I had my motorcycle. It was a cold and cloudy afternoon on November 1st, 1988 when I hopped on my motorcycle and headed towards my dad’s. After meeting him, my plan was to take my motorcycle to the place where it would be stored for the winter. On the way to my dad’s a van passed through my lane of traffic from behind a transport truck. I laid my bike on its side as a defensive maneuver to avoid hitting the van head on. As a result, my motorcycle slid under the back wheel of the van and my bike stood back up, throwing my body against the van. My body, from the chest up, hit the side of the van and the rest of me went into the wheel well, breaking numerous bones and causing a lot of internal injuries. Most significantly, it broke my spine, severing my spinal cord and leaving me a complete t8 paraplegic. I spent 3 months in acute care at Sunnybrook Hospital in Toronto, where they patched up my internal injuries and tried to fix the broken bones as best as they could. I then spent 5 months at Lyndhurst Rehab Centre, where I learned to live my life completely paralyzed from the chest down, and as a person who would forever be using a wheelchair. I spent my 21st birthday there. I left Lyndhurst in June of 1989 and moved into my own apartment, returning to Brock that September to complete my undergrad degree in Psychology. I believe I was the first person who used a wheelchair to graduate from Brock. While in the hospital, it was discovered that I have a learning disability involving my working memory. I had always struggled with school. Once I knew what I was dealing with I could access supports and the services needed for me to learn how to learn. This enabled me to be far more successful with school and opened options that I didn’t believe would be available to me. After I left Brock, I went on to work for a couple of years as a Life Skills Counsellor for people with acquired brain injuries. In 1994, I returned to school to earn my master’s degree in social work at Wilfred Laurier University. Upon graduation I was hired on by the University of Waterloo to work in their counselling department – offering therapy to staff and students. During this time, I was diagnosed with Syringomyelia – the formation of cysts in the spinal column and/or in the spinal cord. I had 3 cysts: two in the spinal cord and one in the spinal column. This required a surgery in February of 1997 to insert shunts that continually drain the cerebral spinal fluid from the cysts to remove pressure and keep them from growing. The cyst in my spinal column had put pressure on my spinal cord, narrowing it and causing atrophy. As a direct result of this, my level of paralysis went from being complete at the 8th thoracic vertebrae to 6th thoracic vertebrae, which is why I am now a complete t6 paraplegic. After my surgery in 1997, I had the fear that I might lose the use of my hands if the cysts were to grow into my cervical spine. It was then that I realized that I wanted to be a dad while I still had use of my hands. After my recovery, my wife and I explored the fertility options available to us (for this full story, look on the “Parenting” page). Fortunately, our first attempt at Intracytoplasmic Sperm Injection (ICSI) was successful and my daughter was born in 1998 – she is the light of my life. After my daughter was born, I decided to take a break from full time work to be a stay home dad. Not everyone was supportive of this decision and there were family members who expressed their doubts regarding my ability to parent my child. Where there is a will, there is a way. Over the years I have honed my ability to persevere, adapt and succeed. I modified a secretary’s desk into a change table and I discovered ways to dress my daughter to make it easier for me to pick her up. We did everything together. We were inseparable and as she grew, she naturally found ways to adapt to my mobility. Soon after my injury, I found my way back to sports. I was still that hyperactive kid, so I tried everything: sledge hockey, tennis, downhill skiing, rugby, basketball, golf. I enjoyed the activities and the challenges they provided, but none of them felt like a fit for me. I excelled at golf and quite enjoyed it, but part of me did it because I was told that I couldn’t do it, so I had to prove them wrong. I developed my own technique and modified the clubs to work for me and played in many tournaments, but eventually I lost the excitement for the sport. … And then I found handcycling. In 1995 or 96 I got my first handbike. At that time, they were an attachment for the front of your wheelchair. It was a fun recreational activity and provided me with a good workout, but the technology and equipment weren’t there yet for it to be a competitive sport. Around 1998, I discovered that Top End developed a handbike that was a standalone, like a tricycle. It was at this time that I started taking handcycling more seriously, feeling I could compete and do marathons. I started training, and it was in 2000 that I went to the Canadian Cycling Championship in the Maritimes, winning a spot on the Canadian Team for 2001. I raced for the Canadian Team in 2001 and 2002, ranking 2nd nationally both years. I went on to several places to race in different marathons, including defi Sportiff, Boston, and NYC. This led me to the European Cycling Championships and ultimately the World Championships in 2002, where I placed 5th in time trial and 6th in road race. My last race was in Rotterdam in Holland. My decision to stop racing competitively was due to my need to return to work after my marriage had ended. I have been active with Public Speaking since my initial stay in the rehab hospital. There was a risk/trauma awareness program called The Party Program for high school students. This program had an in-school module, an offsite module at an emergency room and the final module, which took place at the rehab hospital I was in. I was one of the people who sat on that panel, speaking to students who were not much younger than myself, telling them my story. I have been involved with public and motivational speaking ever since, talking about such topics as risk awareness, the benefits of sports, sexuality and spinal cord injury (SCI). I was a teacher’s assistant for the Human Sexuality course at Brock University, which led to speaking at various conferences. Before my daughter was born and shortly after her birth, I worked for the Canadian Paraplegic Association (CPA). I worked for them for approximately three years, and I wore a lot of hats. I was their Information Coordinator for a period. I was responsible for starting up the Hamilton regional office and subsequently created their peer support program. Over the years, I have also worked as a therapist for able-bodied people as well as people with disabilities. I was also certified by canfitpro as Personal Training Specialist and started my own business called KOR Ability Personal Training, specializing in boot-camps for teenagers. It was a short lived but rewarding experience. For a change of pace, I worked for Home Depot as an electrical associate and really enjoyed the challenges of that position. I returned to my work as a therapist in 2018 and in 2020 I joined the Rehab Psych Lab team at the Lawson Health Research Institute in London Ontario. I love my job. I am involved in several projects with them, focusing on SCI, mild traumatic brain injury, stroke and caregivers. This job has enabled me to connect with some amazing people across Canada. My dream retirement would be to hit the open road and run a podcast with Melanie (my partner in crime) in an accessible motor-home with our t6talk logo on the side, meeting up with people from the SCI Community from coast to coast. When we listen to the stories of people with an SCI and hear what it takes to get through a day, the routine activities become extraordinary. Our everyday lives are important, and I want to shed light on this. We are not in this alone. By making connections, by sharing our stories and aspirations we become stronger… together. https://t6talk.com/events daily 0.75 2026-01-22 https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/1623868915174-OWA3HXHKEK6GOAGB3X8R/SCI+Relationship+Study.jpg Events - SCI Relationship Study Wallace & Melanie: “Exploring Relations Between Adults with Spinal Cord Injury and Their Romantic Partner” is a study that is currently underway. If you have the time, please consider participating. Their website states: The purpose of this unique study is to examine adults with spinal cord injury and their romantic partner's impressions towards intimacy, sexuality, and relationship satisfaction through survey-based questionnaires. This study is conducted in collaboration with the University of Ottawa, McGill University, The University of British Colombia Okanogan, and Spinal Cord Injury BC with funding from the Craig H Neilsen Foundation Psychosocial Postdoctoral Fellowship Award. Dr. M Rocchi, Dr. S Sweet and Dr. H Gainforth https://t6talk.com/mental-health daily 0.75 2023-06-09 https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/7b3349bb-3c47-4f7f-9829-f907228da60a/Mental+Health_On+the+Journey+Together.jpg Mental Health - On the Journey Together Wallace & Melanie: When we opened the Spring 2023 copy of SCIO's Community magazine, we found 3 of our friends featured in it! We posted 2 under Mental Health and 1 under Our Stories. "On the Journey Together" is the second article we came across and it features Bill Russell and his wife Sharon. In this article, the focus is on SCIO's Family Connections program. Often family members step into the role of caregiver/care partner, but there is little to no support for them. Programs like this help to fill the gap. Sharon and her peers learn the importance of sharing and maintaining a regiment of self care. After all, how can we be of support to others if our internal resources are depleted? Congratulations Sharon and Bill! https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/5fba0b09-b655-4132-8563-397e164686d3/Mental+Health_Filling+the+Toolbox.jpg Mental Health - Filling the Toolbox Wallace & Melanie: When we opened the Spring 2023 copy of SCIO's Community magazine, we found 3 of our friends featured in it! We posted 2 under Mental Health and 1 under Our Stories. "Filling the Toolbox" is the first article we came across and it features Phil Raney (aka Pip). In this article, Pip discusses the tools he has collected that have helped him in his journey of improving and maintaining his mental health, as well as the positive impact of giving back and sharing with peers in the disability community. Wallace is so pleased to be a part of the ICBT and physical activity programs that Pip talks about, and we are both so happy we can host peer hangouts where we can all share. Congratulations Phil! https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/d410c496-8b7e-405a-a3fb-364f396ebdc8/Mental+Health_the+body+is+not+an+apology.jpg Mental Health - The Body Is Not An Apology - Sonya Renee Taylor Melanie: I just finished Sonya Renee Taylor's book The Body Is Not An Apology. So it is not a surprise to me that there is a website dedicated to radical self love of the same name. A cornucopia of resources! I wish I could gift the book to everyone who would like to explore the topic and start the journey. A network of resources that we can dive into. Check out the cover for Sonya's book HERE. Amazing! Vision of The Body Is Not An Apology: We believe in the possibility of sustainable social change, community, and personal health and wellness. We know such change must be built on a foundation of deep radical self-love. We are an intersectional, global, difference-celebrating movement that knows our age, race, size, gender, disability, sexual orientation, religion, ethnicity, class, and every other human attribute are assets toward unapologetic radical self-love and living. We know that each time we heal our shame, love our bodies, value ourselves, and step into our power, we give someone else permission to do the same! https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/10819ea7-e996-4402-94f8-18bcb1306de0/Mental+Health_Wheel+Girl+Stories.jpg Mental Health - Wheel Girl Stories Melanie: I struggled with knowing what page to put this post on. I decided on Mental Health. The creation, implementation and longevity of this group speaks to the POWER of PEERS. The Wheel Girls are there for one another... through thick and thin... the BIG stuff and the SMALL stuff. These are the types of groups people need to be connected with before they leave rehab. You can have all the love and support of family and friends... but nothing beats the peer connection. And if you do not have supportive friends and family? Even more of a reason to be connected with your peers. Host, Beth Deer introduces us to the group and we get to sit in on their conversations. Beth has other content on AMI (Accessible Media Inc)... to see more, click HERE. AMI's Mission and Vision: AMI is a not-for-profit media company that entertains, informs and empowers Canadians who are blind or partially sighted. Operating three broadcast services, AMI-tv and AMI-audio in English and AMI-télé in French, AMI’s vision is to establish and support a voice for Canadians with disabilities, representing their interests, concerns and values through accessible media, reflection and portrayal. https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/92f06d8e-62eb-4ceb-b492-d5ec0d0ad80e/Taking+a+Sitting+Stand+-+John+Loeppky.jpg Mental Health - Taking a Sitting Stand: The Spoon Theory Melanie: There are many articles and videos explaining The Spoon Theory. This is just one of them - but it's a good one. The video at the beginning tells it all. John Loeppky does a stellar job. This is important for EVERYONE to consider. It can help you to explain your energy levels to others AND it can help challenge ableist thinking. When we have a greater understanding of what others may be going through we become better friends, partners and allies. I have decided to include this on the following pages: ABC of SCI, Mental Health and Physical Health. John Loeppky: It's all too easy to exclude disabled people because of a sense of inconvenience, but that can leave us feeling unwanted. https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/1634331859957-KL3BMFDMNG46SPL4CDZ2/Wellness+Together+Canada.jpg Mental Health - Wellness Together Canada Melanie: This website is free for Canadians at home and abroad, offering Mental Health and Substance Use Support. It looks like they have variety of supports and they have a immediate crisis support. We are hoping programs like this continue to exist post-Covid. https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/1634332402119-Z8Z4YOHUI5AY8MNID0YO/Mental+Health+Week+-+Innovation+Works+London.jpg Mental Health - Let’s Talk About Mental Health Wallace & Melanie: Mental Health Week was May 3rd to 8th this year (2021). The goal is to raise awareness about the importance of mental health. Innovation Works and Wellness Works offered free online events for Mental Health Week and we were thrilled to be a part of! Our presentation is called “Let’s Talk About Mental Health” and we presented it on Thursday, May 6th, 2021. https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/1634333075690-MSO78H2PUFUOUY9NZ4JU/BounceBackOntario.jpg Mental Health - BounceBack Ontario Melanie & Wallace: We participated in Mental Health Week last week. What a great experience. During a session on Cognitive Behavioural Therapy (CBT), the presenter mentioned this site. We have not looked into it yet, but we wanted to share the link with you. If anyone has had experience with it, please consider contacting us with some feedback. Here’s what the introduction says… “BounceBack is a free, guided self-help program that’s effective in helping people aged 15 and up who are experiencing mild-to-moderate anxiety or depression, or may be feeling low, stressed, worried, irritable or angry. Participants receive telephone coaching, skill-building workbooks and online videos to help them overcome these symptoms and gain new skills to regain positive mental health. To receive telephone coaching support, clients must either be referred by their primary care provider (family doctor, nurse practitioner) or psychiatrist, or they may self-refer as long as they’re connected with a primary care provider. For those who are not quite ready for coaching, our online videos can provide helpful tips. BounceBack is not a crisis service, psychotherapy or counselling, but a life-skills program that participants work with to develop coping techniques so they can overcome challenges now or in the future. Typically, participants take three to six months to complete the program.” https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/1634333981234-7N8EU1TB14AVM9ADOFNI/Unlocking+Us Mental Health - Unlocking Us Melanie: Wallace and I like to go out for walks together when the weather is good. When I go out on my own, I will often listen to an audiobook or a podcast. By the end of 2019 I was heading for a complete burn out and my health was compromised. I started listening to Brene Brown’s podcast “Unlocking Us” in early 2020 and wow… what a positive impact it has had on me (including how I interact with Wallace). Brene has a variety of guests talking about a wide array of topics. Divergent thinking! The common thread is being true to yourself, doing the work to make self improvements and to be open to change. https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/1634333594444-C8EFRIAAHPDJ193603ZE/Headspace+Guide+to+Meditation.jpg Mental Health - Headspace Guide to Meditation Melanie: I often have a hard time falling asleep at night. I might be tired but the trains in my head just keep chugging - and now I have hormonal changes going on. I have tried lots of different strategies, including sound apps, but nothing was quite right for me. Then, about a week ago, I came across this series on Netflix. For me, it’s the combination of the content, the visual and the voice. As soon as I start it I feel a calm and a quiet come over me… similar to when I am doing yoga. https://t6talk.com/periods daily 0.75 2023-10-04 https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/e385676a-d111-483e-9924-fc8fcf5ca8c6/period+project.png Periods - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/6b34e9d9-543a-4452-a4b2-d697e42e43ff/1.jpg Periods - SCIO Peer Connections & t6talk: Period Problems Melanie: When Julie from SCIO asked if I would join her to co-host a Peer Connection on the subject of Periods, I immediately said yes. I was thrilled to be a part of the event that happened on Monday, February 14, 2022. It was a great conversation. Julie, Sheri, Teri and Val shared their stories with us. Angela from Knix talked about their line of period underwear and Ali from TINA Healthcare gave us a demonstration of her tampon applicator (links to Knix and TINA can be fround in the Resource section below). People tuned in from across Canada. In order to encourage conversation, we did not record this particular session. Based on the feedback we received, we will be recording and posting future events so that people can access the information if they are unable to attend the events. Julie and I are currently working on a 2 part series on Perimenopause/Menopause & SCI. It will be posted on the Events page and we will put it out on Twitter - please follow us #t6talk . https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/f2180a93-6bd4-4bdc-8d93-4fe20afd05ee/Wallace+-+TPP.jpg Periods - The t6talk Period Project: with Wallace Melanie: Wallace and I both feel it is important to include a variety of voices for any topic… including this one. It was great to talk about his understanding of menstruation as a young person, as a teenager and as an adult. Our ability to discuss topics like this can have a direct impact on the relationships we have. In Wallace’s case, his relationships with past intimate partners, the continued relationship with his daughter and his relationship with me - his partner in crime. This discussion illustrates how open communication can have a positive effect on our relationships. https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/efd4f57e-7e35-4fa0-9c80-29c82f1212f1/Madame+Gandhi.jpg Periods - Madame Gandhi: Sisterhood, Blood and Boobs at the London Marathon 2015 Melanie: While creating this page and during conversations with others... I would find myself looking inward to an image of a woman running a marathon who chose to let her period blood run free as she ran. Every time that image comes to mind I immediately want to dance and sing and holler and cry. So I looked her up... and she is lovely - in all the ways that lovely can mean. She is fierce and fragile. Her name is Kiran Gandhi AKA Madame Gandhi (MG). "...a singer, percussionist, activist and music industry thinker known for her electronic-based sound and fourth-wave feminist perspective." I just added her EPs Voices and Visions to my music library. I am listening to her right now. My covid blahs are falling away and I want to celebrate. I have added a link to her blog post "Sisterhood, Blood and Boobs at the London Marathon 2015" below - a super addition to this page. Dance with me! Madame Gandhi: There is so much shaming and insecurity and discomfort around something that should be so normal. I love this picture of MG. The Future is Female... MG clarifies this statement in her blog of the same name which can be viewed HERE. Powerful! "The future is female does not mean female over male, nor is it trans-misogynist. The future is female means that we will no longer live in a world that believes that hierarchy and zero sum games are the only viable forms of social organization." Add your voice to this conversation! Write a poem, draw a picture, do an interpretive dance - your voice can take any shape that works for you. Use your name... create an alias for yourself... you make the rules for you... https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/73d46705-f59d-4eaa-a205-35c07a0b92c7/Val.jpg Periods - The t6talk Period Project: with Val Melanie: Val is our friend from Ottawa. She was one of the first people to contact us after we launched t6talk at the beginning of last year. Her support and encouragement have meant a lot. I loved speaking with Val… she is open, ready to laugh, kind, generous and beautiful. I look forward to having more chats with her. Our November 25th, 2021, email update to our mailing list included the following… “Melanie's Call Out: I am working on some posts that relate to SCI and periods. This is a much needed and rarely discussed topic. We are looking for personal accounts! Share as much as you can. Written, video - whatever works for you.” Val emailed us back to say… “Definitely count me in to talk about periods with a SCI… don't really have before versus after comparisons but do have lots to share. Will be in touch when I've had a bit of time to think about it.” A few weeks later, Val wrote us an amazing email about her experience with periods. I contacted her to see if she would be willing to chat via Zoom and she agreed. Amazing. We want to hear from as many voices as possible and Val brings with her the lived experience of being born with Spina Bifida. I thoroughly enjoyed our time together talking about periods. ALERT: this is an adult conversation and may include a few expletives - so be warned! View or chat by clicking the link below. Val’s Bio: Val studied archives and records management at school and volunteers at the Humane Society as Covid restrictions allow. She has an affinity for animals and gains great satisfaction in the work she does. Val loves to read and write and is currently working on a book. She also knits, sews AND bakes (mmmm baked goods)! She also enjoys horseback riding and swimming and has currently found paint by numbers and puzzles. We look forward to seeing what she decides to do next! https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/b27baf19-97dc-49d0-b59d-30815d4591d1/Sheri+Roberts.jpg Periods - The t6talk Period Project: with Sheri Roberts Melanie: Wallace was fortunate enough to have met Sheri a very long time ago and they've connected from time to time over the years. I have met a lot of super dee duper people this past year and Sheri is one of them. I can remember the first conversation I had with her. Sheri was speaking to Wallace and me (via Zoom) about our presentations for SCIO on intimacy. We discussed doing something similar for the Independent Living Centre of Waterloo Region (ILCWR) - where she works as a Community Resource Coordinator. What struck me right away was her openness to talk about all things sex. AMAZING. It was very easy to dive right in and have a candid conversation with her. She made me laugh soooooo hard... and I love to laugh. Sheri is quick, clever, kind, irreverent and lovely - I look forward to delving into other topics with her. When I talked to Sheri about The t6talkPeriod Project, she agreed to talk to me and share her personal experience with all of us. It takes a lot to share this kind of information with others - her generosity is appreciated. ALERT: this is an adult conversation and may include a few expletives - so be warned! The link to our conversation is below. Sheri's Bio: Sheri Roberts is a busy mom to a 13 year old son, as well as an advocate for people living with disabilities. She sustained a complete spinal cord injury in a car crash at the age of 18. After completing her B.A. in Economics at McMaster University she spent the next number of years gaining knowledge and educating others on disability issues. Over the last 23 years, Sheri has given presentations to 1000’s of people ranging from children as young as 3 years old, to high school and university students as well as doctors, lawyers and various professionals. Much like her life experience, her presentations vary in subject including disability awareness, AODA Customer Service Regulation training and policy making, adapted sports and fitness, preventing risk taking behaviour in young people and teens, peer pressure avoidance and first-hand candid recounting of the life of a person living with a spinal cord injury. She has a special ability to engage with and captivate an audience with her down-to-earth way of sharing information. She is an open book and is willing to speak on each and every component of her life as a woman, mother and athlete living with a disability. https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/01ca37f0-64fe-4322-8b0c-8b3b0788a9cf/Julie+Watson.jpg Periods - The t6talk Period Project: with Julie Watson Melanie: I first met Julie through the SCIO Connect Peer Program when Wallace and I did some talks for them. I have had the good fortune to spend personal time with Julie - allowing us to get to know one another better. My sister Mary-Beth has also spent time with Julie and we have come to the agreement that Julie is indeed an “Earle Girl”… a sister. I look forward to more time and more conversations with this intelligent, humourous, giving and beautiful person. Still water runs deep. When I told Julie about The Period Project, she graciously agreed to participate and we enjoyed a candid conversation about menstruation and SCI. ALERT: this is an adult conversation and may include a few expletives - so be warned! The link to our conversation is below. Julie’s Bio: Julie Watson is a Peer Program Coordinator for Spinal Cord Injury Ontario; and has been with the organization since 2016. She graduated from UWO in 2007 with a Bachelor of Arts degree in Psychology and Sociology. Julie sustained a C4-5 spinal cord injury from a car accident in 2000 and understands the challenges one can face after an injury. She enjoys listening to podcasts and spending time with friends and family. https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/80c92eae-ecc3-415d-b9ec-0ff57e83dce7/Teri+Thorson.jpg Periods - The t6talk Period Project: with Teri Thorson Melanie: From the moment I met Teri, I felt a connection. It is never hard to have a conversation with her and she is so much fun. If we lived in the same province there could be trouble - the good kind. She is smart, funny, kind, beautiful and she’s a born troublemaker. I love this photo of her taken at a fashion shoot… BAM! When I told her about creating a page to focus on PERIODS and asked if she’d like to record a Zoom conversation… she did not hesitate. Teri is very generous when it comes to sharing her experiences and this was no exception. She enjoyed some wine and I enjoyed some frosty beer as we had our chat. ALERT: this is an adult conversation and may include a few expletives - so be warned! The link to our conversation is below. Teri’s Bio: Teri Thorson was a support technician for a computer software company and professional dancer before a 1996 motor vehicle crash in Australia left her a quadriplegic. With determination and support from friends, family and co-workers Teri was able to go back to work, become a Manager of the Technical Division and achieve her own personal independence. In 2002 she discovered wheelchair racing. Within the span of 2 years she returned to Australia to focus on full-time training and made the Canadian National Team. Her dedication was rewarded by being able to compete at the 2004 Athens Paralympic Games in the 400m track event where she made the finals. Currently, Teri lives in North Vancouver with her partner and her son. She is a board member of BC Wheelchair Sports, Vice President of the WC Race Series and the President of the BC Wheelchair Rugby Association. She continues in sport as a recreational wheelchair rugby coach and has a fashion design/image consultant business. https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/d08b138e-7c9b-4759-8703-274586f37f22/Periods_The+Spin+Winter+2020_Ask+the+Spin+Doctor_periods.jpg Periods - The Spin Winter 2020: Ask the Spin Doctor Melanie: Teri Thorson emailed me a snapshot of SCIBC's magazine The Spin Winter 2020, Highlighting "Ask the Spin Doctor". We had been discussing periods and SCI and she knew I was gathering up resources to share. Thank you Teri! The article starts... "I was injured late last year and missed my period for several months. Now it’s back and it feels a lot more complicated to manage – got any tips? - Kelly from Chilliwack". Drawing on her experience as a Nurse Practitioner at BC Women’s Hospital Access Clinic, Natasha Prodan-Bhalla provided a good overview of what Kelly might expect. This is good information to share. Enjoy! Side Note: Julie Watson of SCIO and I are co-hosting a 2 day Menopause Peer Connection May 11th and 18th, 2022. Natasha Prodan-Bhalla has graciously agreed to join us during the May 18th session. Dr Cathy Craven will be joining the May 11th session. PLUS... 6 peers will share their experiences. EXCITING! Click on the link below to view The Spin Winter 2020 and GO TO Page 30 to read the article. https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/4b249665-c88a-45de-b284-dcfb9d758d1f/Periods_Period+poverty+project.jpg Periods - CBC News: Period Poverty Project, by Rebecca Zandbergen Melanie: I wanted to share this article to highlight grassroots projects that are out there working to remove the stigma around periods. Stevie Brocksom is the organizer for the Period Poverty Project in London ON. If you do a search on Period Poverty Projects, you will find other people taking this work on as well. Brilliant. In preparation for writing up the ALT text, I was looking to see which preferred pronouns Stevie uses… I found their TikTok page and treated myself to "Ice Ice Baby"... check it out HERE. I am not familiar with TikTok so I don't know if they have ALT text. Just in case... The video shows Stevie with their young child. You do not see the child's face, but it appears that they are breastfeeding and dancing to the music. Dinner and a show... https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/5f0783da-1248-4261-a764-d754d78e052e/Periods_Changing+The+Flow+-+Menstrual+Equity+and+Period-Positive+Products.jpg Periods - Changing The Flow - Menstrual Equity and Period-Positive Products Melanie: I think this is a great organization. Check them out. They are also mindful of the language they use stating "Why we say People Who Menstruate and Menstruators. Changing The Flow recognizes that not all women menstruate, and that not everyone who menstruates is a woman." Yep. Changing The Flow: Just Like Toilet Paper... We believe every washroom should provide period products. Inclusive, accessible, free. We can help you do it, #justliketoiletpaper. Changing The Flow is a social enterprise dedicated to the achievement of menstrual equity and the elimination of stigma surrounding periods. We do this through awareness, education, and implementation. https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/8c33f35e-3cb6-4199-bf16-85bf64cde7b5/Fab+Little+Bag.jpg Periods - Fab Little Bag Melanie: To be honest... what first attracted me to this company was their 1 minute and 30 second movie "Je Suis Un Tampon: The tragic lament of a tampon, contemplating her fate." The memory of watching it makes me smile. Watch this gem by clicking HERE. Watch it to the end! I agree with the FLB mission statement, but I am not sure about purchasing a product to achieve it. Having said that... I could see how having one or two in your pocket for times when there are no options could be very appealing. Kind of a back-up plan. If we felt more comfortable talking about periods, would we be more comfortable sharing our needs (like having a bin to dispose of tampons and pads)? If you have a different perspective, please let me know... I want to hear from you. FLB's Mission: Ending Pollution .PERIOD. FabLittleBag exists to protect rivers, oceans and beaches from the pollution caused by flushed period products. With the UK alone flushing 2.5m tampons and 1.4m pads down the toilet each day, it is a big issue. FabLittleBags are made of plants (which means they are carbon reducing) and recycled plastics, supporting the circular economy of waste. Our glue to seal the bag closed is vegan. https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/55d6fa0e-0ca9-4573-9b68-c69d7f50d641/CAPMR.jpg Periods - What is a Physiatrist? Melanie: I know that anyone I've spoken to with a spinal cord injury has a Physiatrist, but that's about it... my knowledge is very limited. I thought it would be a good idea to take a moment to gather some information and gain a greater understanding of Physiatry. I came across the Canadian Association of Physical Medicine & Rehabilitation (CAPMR) website. CAPMR: Physiatrists are physicians who specialize in physical medicine and rehabilitation (PM&R), a medical specialty that deals with the evaluation and treatment of patients whose functional abilities have been impaired. The disabilities and impairments may result from injuries or diseases such as stroke, neuromuscular disorders, musculoskeletal disorders, cardiopulmonary diseases, arthritis and others. The physiatrist can help to improve a person's functional capabilities by medical treatment and organizing and integrating a program of rehabilitation therapy such as physical, occupational, speech therapies, psychological, social nursing, prosthetic, orthotic, engineering and vocational services. Physiatrists usually work closely with geriatricians, rheumatologists, neurologists, hospitalists, surgeons and others. If you have anything to add, please let us know. https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/577d2318-47f2-4dcb-b7d8-b173bd8b54ed/The+Ontario+Curriculum.jpg Periods - The Ontario Curriculum Melanie: I am currently working on learning more about what young people are being taught in Ontario schools and reaching out to speak to people who have a practical understanding of the curriculum. Stay Tuned… https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/467043ae-1e8e-4707-afd2-6b359d2a5581/PCOS.jpg Periods - Polycystic Ovary Syndrome (PCOS) Melanie: During my interview with Sheri Roberts, she discussed PCOS and how it has impacted her life, so I wanted to add a resource here for you. There are a lot of websites that discuss PCOS. The information I found on the ONE Fertility Kitchener Waterloo site was easy to read. I am not promoting their fertility services, I just wanted to provide a simple overview of PCOS. ONE Fertility Kitchener Waterloo: According to the University of Saskatchewan, approximately 1.4 million Canadian women are diagnosed with polycystic ovary syndrome (PCOS), making it the most common endocrine disorders occurring in Canadian women. https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/0d0af6ca-1048-437d-a3c2-0ffffe5b75b0/Molar+Pregnancy.jpg Periods - Molar Pregnancy Melanie: in my interview with Sheri Roberts, she shared her experience with a molar pregnancy. I thought it was important to add this resource here for people to reference. There are a lot of sites out there that cover molar pregnancy - so the HealthLink BC site is one option. HealthLink BC: A molar pregnancy happens when tissue that normally becomes a fetus instead becomes an abnormal growth in your uterus. Even though it isn't an embryo, this growth triggers symptoms of pregnancy. When a person learns that they are experiencing a molar pregnancy, grief and grieving are a reality. For them, the pregnancy was real and viable prior to diagnosis. This HealthLink BC page lists Related Information and Grief and Grieving is at the top of the list. https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/02de3cb5-88f5-4bb5-9660-92dd07fef2ed/Endometriosis.jpg Periods - Endometriosis Melanie: I was diagnosed with endometriosis when I was 20 or 21. I had many years of severe pain and discomfort. I have talked to many people who describe much the same symptoms, but were not aware of this disorder. This is important information to have and to discuss with your health care practitioners. The Endometriosis Network Canada (ENC) website is dedicated to Endometriosis. ENC: The Endometriosis Network Canada is the first and only registered charity in Canada dedicated to raising awareness of endometriosis and helping those it affects. The endometrium is the lining of the uterus that sheds each month during the menstrual cycle. Endometriosis occurs when tissue similar to that of the endometrium implants abnormally outside of the uterus in the pelvic cavity, and in some cases, other locations in the body, to form lesions, cysts, nodules and other growths. https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/45a5f6f9-1427-4f45-8933-258aaabd8dfd/AD.jpg Periods - Autonomic Dysreflexia (AD) Melanie: This handout is a great resource for those unfamiliar with AD or for those of us who need a refresher. In my discussion with people about their periods, many have talked about how periods can trigger their AD. We need to keep the communication going. Sharing our experiences creates a resource for all of us to draw from. https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/a22cfcce-7d49-4b2e-a1e4-9c22ed61f6fd/SCIBC+Contraception.jpg Periods - SCIBC Resources: Birth Control Melanie: Getting bad information about birth control can be dangerous. It is important that we arm ourselves with accurate information so that we can make informed decisions about our lives and our health. Many people have found that birth control has helped them manage their period symptoms. SCIBC looks at contraception through the lens of SCI. The link below will take you to their birth control resources... but they have so much more info that you can check out. They do acknowledge that their may have gaps when it comes to the latest research, so they refer people to The Society of Obstetricians and Gynaecologists of Canada Sex & U page. I had no idea this site existed. There is A LOT of information available to us, over an above a discussion on contraception. https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/2abe640c-518c-466c-95ea-eb6b54605c26/SHORE+-+Birth+Control.jpg Periods - SHORE Centre Resources: Birth Control Melanie: There are lots of subjects we can quickly Google and pull up some information… but there are times when we MUST be mindful of the source. Just because it's on the internet does not mean the information you are looking at is the most current or accurate - it may not have any truth to it at all. When it comes to birth control, we need the most up to date information and facts on how to manage our fertility and our periods. SHORE Centre has some great resources. I encourage you to check them out.The link below will take you right to their information on birth control. https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/82bb1f16-cc93-49cb-baba-29c654b264e4/Tina+Healthcare.jpg Periods - Tina Healthcare Melanie: When I was speaking with Teri Thorson, she discussed the fact that she has a tool to insert suppositories for her bowel treatments. She sent me a link for the Independent Suppository Applicator Tool . We wondered why there wasn't something similar for tampons. Drum roll please…. Here is an awesome invention! Something to help insert and remove tampons. AMAZING. I sent the link to Teri right away. She had not heard of it. If you have tried this product, please let us know how it worked for you! TINA: Accessible, Inclusive, Comfortable. At Tina Healthcare, we think women of all ages, abilities, and body types deserve options for handling their menstrual cycle. Millions of women find tampons to be tricky, daunting, and inconsistent. TINA offers an assistive solution. We’re women, we’re innovators, and we’re taking control of the conversation about our health. What TINA’s great at... Accessibility. Instead of using your fingers, just put your hand through the handle and slide along the track with your arm muscles. Easy and smooth, the tampon goes in correctly and comfortably every time. Extra reach. Perfect for women with limited mobility, TINA gives about 4 extra inches of reach. Perfect angle.TINA is designed to help you insert tampons at the right angle, every time. The patented “contact petals" are designed to help you feel when you have the correct alignment. Over before you know it. TINA has helped many women insert tampons for the first time. Just slide the handle along the track to insert tampons consistently and correctly! Clean Hands. You should never be ashamed of your body’s natural processes, but on some crampy days, we’d rather not deal with the mess. https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/17ae74e7-17d9-4970-9d72-6cfa201e45b5/Knix+-+Period+Underwear.jpg Periods - Period Underwear Melanie: Although I know they exist, period underwear are still fairly new to me and I have never tried them. I am 50 years old, and as of December 16th, 2021 I have been without a period for 29 weeks and counting! Hooray! Regardless… I did not want to miss out on trying these underwear. Luckily (hahaha), I have the pleasure of occasionally peeing when I lift something heavy, sneeze or laugh too hard. So I ordered a pair of undies from Knix. I will try them out and let you know how they work. January 14, 2022 Update: they work!!! Super comfy, wash well and look good. I look forward to trying more. The image I used here was taken from the Knix website. I wanted to show what they look like. There is a lot of variety! There are several places where you can order them from… and I’ve added some links so you can check them out. I cannot recommend any of these companies or any of their products… So… if you’ve tried them… please let us know how they worked for you! Knix (Canada): It’s time to switch to period underwear and use less traditional pads and tampons. Whether you use them as backup (night or day) or as a full replacement, shop the most absorbent, machine-washable, and comfortable Leakproof Underwear. And enjoy worry-free protection from blood, pee, and sweat. Note From Melanie: If you would like to get a closer look at materials, seams etc. you can book a virtual fitting and they will help you get a close up look - click HERE. Aisle (Canada): Your new period aisle. People with periods deserve safe, effective & sustainable options designed for their comfort. Products that work well, feel great, and do good while they're at it. Thinx (USA): Every pair of Thinx is made with our signature, innovative technology for the ultimate period protection. Our breathable products are safely made with cotton, nylon, and elastane (for a little stretch!) Dear Kate (USA): At Dear Kate, we believe women are invincible and technology is empowering. Our products are hi-tech and low stress, thoughtfully designed for everyday confidence. Womanhood is a journey and no matter where you are in life, you deserve to live worry-free and fear-proof every day of the month. Let us help you get there. Modibodi (Australia): We’ve got underpants for periods, incontinence, pregnancy and perspiration in a range of styles, sizes and absorbencies to suit every bodi. Proof (USA): Go with your flow. There's Proof for every phase of your flow, from surprise sprinkles when you sneeze to super heavy periods and beyond. Saalt (USA): Leakproof period underwear designed to withstand laughing with your best friend, the sweat of spin class, vivacious sneezes, and periods. It does it all, just like you. Note From Melanie: I am hoping to set us a Zoom chat with Saalt to get more information on seams etc. Will keep you posted! Cora (USA): Your body changes from day to day. And so do the ways to care for it. Period Company (USA): The Revolutionary, waste-free, super absorbent, affordable, non-toxic, comfortable, period underwear for all. Apele (USA): Tomi and I started Apele because we want to help girls and women feel more confident in their daily lives. We grew up in a society where bodily changes were not discussed, so we created a company where we can share positive image information and solutions to empower girls and women. https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/98bf511e-0d4e-4d74-a94a-9177937c013c/%23peeforfree.jpg Periods - SCIO #peeforfree Melanie: During my conversations with people about periods, we often talk about managing bladder care and menstruation. We then talk about the costs involved with bladder care. This in turn bring us to the SCIO Pee For Free campaign. Please check out the link below. "Do the best you can until you know better. Then when you know better, do better." Maya Angelou Challenge Your Ableism: What if those of us who are able bodied had to pay... let's say 25 cents... every time we had to pee? There would be outrage! It would become a political issue. What about our human rights? After all, urinating is an act of daily living. How long would it be before we peed for free? So why is it ok for some people to pay $5 or more - each and every time they have to pee? Do the math. And that's not even looking at the cost of bowel treatments. https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/6ade6e4b-e665-45a5-92f9-ceabffd41954/Bladder+Diagram+-+Matt+Albrecht.jpg Periods - Bladder Care and SCI Melanie: Some people who experience a traumatic spinal cord injury are able to empty their bladder and manage their bladder care in the same manner they did before their SCI. In these cases, managing periods would likely remain unchanged as well. Others need to investigate alternate options for bladder management… and like most things... it is not a one size fits all situation. The way in which someone manages their bladder can impact how they manages their period. This is a very general overview. If I have missed anything or if I got some facts wrong, please let me know. The mitrofanoff surgical procedure uses the appendix or part of the colon to create a self-sealing channel from the surface of the abdomen to the bladder. This method is used for intermittent catheterization. Meaning a catheter is inserted as needed to drain urine and then removed when the bladder is empty. Similaryly, intermittent transurethral catheterization is when a catheter is inserted directly through the urethra and into the bladder, as needed, to drain urine and then it is removed when the bladder is empty. The suprapubic surgical procedure makes an opening from the surface of the abdomen to the bladder and is used for indwelling catheterization. Meaning the catheter is inserted into the bladder and stays there all the time. The catheter is changed once a month or as needed and is connected to a leg bag that collects the urine and is drained. Similarly, transurethral indwelling catheters are inserted through the urethra and into the bladder and stays there. The catheter is changed once a month or as needed and is connected to a leg bag that collects the urine and is drained. https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/4961eed9-e852-434a-aea5-27a4b34b03f7/Facing+Disability.jpg Periods - How do women deal with menstruation after a spinal cord injury? Melanie: Facing Disability is a resource for the SCI community. The question "How do women deal with menstruation after a spinal cord injury?" is answered by Diane Rowles, MS, NP in a VERY short video. https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/0ade69f3-8bda-43dc-ad30-7d6e8f537027/Natasha+Prodan-Bhalla.jpg Periods - SCIBC: The Spin Doctor: How Do I Manage My Periods with a Spinal Cord Injury? Melanie: The question, “How Do I Manage My Periods with a Spinal Cord Injury?” is answered by Natasha Prodan-Bhalla, Nurse Practitioner for BC Women’s Hospital Access Clinic. A great big thanks to Jaspreet from SCIO for this resource. Natasha discusses the use of menstrual pads, period panties, tampons, menstrual cups and hormonal birth control. Notably, she discusses an amazing product… the Tina Kit… to help with the insertion and removal of tampons for those with limited hand function (or for those who are new to tampons). I have emailed the company for more information. Natasha also promotes the Access Clinic at BC Women’s Hospital in Vancouver. If anyone knows of any similar clinics anywhere else in Canada - please let us know!!! Access Clinic: Together a nurse practitioner and gynecologist provide complex contraception counselling, menstrual suppression and dilator therapy in addition to regular reproductive health screening for transgender patients, adolescents (16+) and adult women with intellectual or physical disabilities. https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/0b9f1edc-4fe2-4fbb-b5a7-5c0177cbe0ed/Help+Codi+Heal+-+Periods+and+SCI.jpg Periods - "Periods, Birth Control and Spinal Cord Injury" Melanie: "Periods, Birth Control and Spinal Cord Injury" is a blog by Codi Darnell and is posted on her site Help Codi Heal: Living that mom, wife and wheelchair life. Codi is from BC and she has used writing as a means of reestablishing her sense of self after a traumatic sci in 2016. Sites like this can be a cathartic experience for the creator and they also have the added benefit of being a resource for the rest of us. The link below will take you directly to her post on periods… but check out the rest of her site! Thank you Codi! Codi: I wanted to bring people along in my recovery so that they could learn alongside me. My knowledge of disability was slim, and what I did have was woefully misinformed. I thought if I could help people understand the intricacies of my disability—if I could answer the questions people didn’t want or think to ask—that they would be more inclined to see me instead of the chair. https://t6talk.com/privacy daily 0.75 2021-12-28 https://t6talk.com/counselling daily 0.75 2025-12-04 https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/fbd8e7ac-db73-430a-80ea-51f7ed918dd0/SherryMaxwellandAssociates22.png https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/64b19814-aea2-470a-b485-a162de2e71d7/Wallace_2025+Bio+Pic.jpg https://t6talk.com/disabled-creatives daily 0.75 2023-06-09 https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/35e7dc15-2567-474f-a7bb-10b18f0e6a66/Disabled+Creatives_Care+During+COVID_Photo+Essay+on+Interdependence.jpg Disabled Creatives - Care During COVID: Photo Essay on Interdependence Melanie: If you have not checked out the Disability Visibility Project (DVP), I encourage you to explore the site by clicking HERE. The founder and director Alice Wong (she/her) is a disabled activist, writer, editor, media maker, and consultant (taken from the About page). While exploring the site I came across “Care During COVID: Photo Essay on Interdependence” by Marley Molkentin and Kennedy Healy (click on link at bottom of post). The power of images and words and the importance of connection. You can also check out Kennedy's website Crip Crap, by clicking HERE. Marley & Kennedy: The lack of awareness and media representation of formalized in-home care during and before the pandemic led us to create this project. We share it in the context of a global pandemic that continues to cause great suffering to many underrepresented groups. This is the story of two people with relative privilege, told in solidarity with all those discarded and forgotten by the state. https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/476b28d5-22f7-4076-b042-4177358f7d8f/Disabled+Creatives_Henry+Fraser+Art.jpg Disabled Creatives - Henry Fraser Art Melanie: I found Henry Fraser's website in February of 2022, and I am just getting it posted now. I did not keep any notes on how I came across the site. Oooops. So, if someone shared it with me, please remind me so I can say thanks. Now that our accessibility renovations are complete, we are looking for some cool art. I am enamoured with “Turquoise Rabbit" and Wallace is fond of "Magenta Ostrich”… we may have to consider both. Henry: As a young child I loved art. But as I grew up I fell out of love with the subject. I lost all my enthusiasm to create. Without my accident I never would have found that love I had as a kid. Adversity has given me a gift. https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/87ebb2b4-1eaa-41e8-abcf-8dab19fcabeb/Disabled+Creatives_Hand+Cut+Company.jpg Disabled Creatives - Hand Cut Company Wallace & Melanie: Our kick-ass friend Adam (he/they) not only creates wicked merch, they also promote other disabled/neourodivergent creatives on their Hand Cut Company site. Check it out by clicking on the link below! Also see our post on Adam's site DNA -SWO. https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/381eb225-5414-4d78-959e-15c943fdc8f9/Disabled+Creatives_DNA-SWO.jpg Disabled Creatives - DNA-SWO Wallace & Melanie: The disability community is filled with very cool people doing really cool things. Our friend Adam (he/they) is one of them. The Disability and Neurodiversity Alliance (DNA) of Southwestern Ontario (SWO) was created to give space for community to share. Check it out by clicking the link below! Also see our post on Adam's Hand Cut Company. DNA-SWO: The Disability and Neurodiversity Alliance (DNA) of Southwestern Ontario (SWO) was created to build a community of individuals who identify as autistic, d/Deaf, disabled, mad, neurodivergent, and/or as having a chronic illness, disability, long-term condition, or mental illness. Or more simply put, anyone who does not identify as non disabled, though with this being an alliance they are welcome to join us as allies. https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/f530c067-6165-4d90-acef-dc3649ff07c5/Disabled+Creatives_Tate_disability+and+art.jpg Disabled Creatives - TATE: Disability and Art Melanie: Another page to explore. TATE: This page was created with the help of staff and volunteers from Tate’s disABILITY Network. Our network promotes the social model of disability, proposing that people would not be disabled in a social structure that is designed for everyone’s needs https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/c2f614b3-aa04-4761-b5bf-2050f530114f/Disabled+Creatives_Sins+Invalid.jpg Disabled Creatives - Sins Invalid Melanie: I have just started exploring this site. So much to learn. I love that one of the main menu options is EDUCATION. That's what I am working on... educating myself and challenging my ableism. They have provided a curriculum "to help guide your political development". Sins Invalid: Sins Invalid is a disability justice based performance project that incubates and celebrates artists with disabilities, centralizing artists of color and LGBTQ / gender-variant artists as communities who have been historically marginalized. Led by disabled people of color, Sins Invalid’s performance work explores the themes of sexuality, embodiment and the disabled body, developing provocative work where paradigms of “normal” and “sexy” are challenged, offering instead a vision of beauty and sexuality inclusive of all bodies and communities. https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/81c8ec68-fcda-4275-92a7-fee6ad8c6d8e/Disabled+Creatives_RIVA+LEHRER.jpg Disabled Creatives - Riva Lehrer Melanie: I am currently listening to Riva Lehrer's book Golem Girl. I acknowledge my privileged at being able to purchase an audio version along with a physical copy of the book. I find it hard to read for extended periods of time, so audio-books have brought me back to reading. The physical copy means I can readily go back to a bit that I want to share or reread... AND it comes with Riva's art. When I experience her work I feel grounded and connected to the earth. It is honest and beautiful. So many stories and so many connections. Bio: Riva Lehrer is an artist, writer and curator who focuses on the socially challenged body. She is best known for representations of people whose physical embodiment, sexuality, or gender identity have long been stigmatized. Ms. Lehrer’s work has been seen in venues including the National Portrait Gallery of the Smithsonian, Yale University, the United Nations, the National Museum of Women in the Arts in Washington, DC, the Arnot Museum, the DeCordova Museum, the Frye Museum, the Chicago Cultural Center, and the State of Illinois Museum. Awards include the 2017 3Arts MacDowell Fellowship for writing, 2015 3Arts Residency Fellowship at the University of Illinois; the 2014 Carnegie Mellon Fellowship at Haverford and Bryn Mawr Colleges; the 2009 Prairie Fellowship at the Ragdale Foundation. Grants include the 2009 Critical Fierceness Grant, the 2008 3Arts Foundation Grant, and the 2006 Wynn Newhouse Award for Excellence, (NYC), as well as grants from the Illinois Arts Council, the University of Illinois, and the National Endowment for the Arts. Her memoir, Golem Girl, will be published by the One World imprint of Penguin/Random House in October 2020. Ms. Lehrer is represented by Regal Hoffman & Associates literary agency, NYC. Ms. Lehrer is on faculty at the School of the Art Institute of Chicago, and instructor in the Medical Humanities Departments of Northwestern University. https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/937fc102-d4fa-49cf-b400-1ddb4f652129/Disabled+Creatives_Tangled+Art+and+Disability.jpg Disabled Creatives - Tangled Art + Disability Melanie: We are only an hour away from Toronto. I look forward to visiting this gallery soon with Wallace. Tangled Art & Disability: A site of political engagement for disability arts and culture. Our artists and artwork all come from the many disability communities that exist. Disability Arts and culture wants to dwell with disability rather than attempt to eliminate it. Tangled is making and changing culture in felt, not-fully knowable ways, by showcasing Disability Arts and advancing what we call ‘crip cultural practices’: that is, accessible programming and practices born out of and centring the disability community. https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/07f47487-09a7-4a76-be46-2ccf269a61fd/Disabled+Creatives_Canadian+Art+article+8+Things+Everyone+Needs+to+Know+About+Art+and+Disability+by+Leah+Sandals.png Disabled Creatives - Canadian Art article: 8 Things Everyone Needs to Know About Art and Disability by Leah Sandals Melanie: Now I know. But I suspect it's the tip of the iceberg… Article: Disabled people aren’t just audiences—they are artists and creators, too. When asked what still bothers her most about the way disability is treated in the wider artworld, Chandler says it’s the idea that improving accessibility only relates to disabled people as audiences. “Typically when galleries and theatres think about including disabled people, it is as an audience,” Chandler says. “Thinking about how to have wheelchair users in your audience is different than thinking about how we might include disabled people as producers of culture—as performers and artists and musicians.” Chandler notes that, on the upside, there is increasing interest from museums and other organizations about improving accessibility—but it needs that crucial shift in perspective. “While there is this big push to make things accessible, I think it is quite focused on audience more than artwork.” https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/8001c7d6-b2b4-4fa0-bd11-067366110265/Disabled+Creatives_Disability+Visibility+Project.jpg Disabled Creatives - Disability Visibility Project (DVP) Melanie: This is a great site to check out. I just finished the audio version of Disability Visibility, an anthology edited by Alice Wong. We also picked up a hard copy of the book to reference. There is no singular disability experience. It is important to learn about the varied experiences of people, to keep challenging our perceptions and our ableism. Disability Visibility Project: The Disability Visibility Project is an online community dedicated to creating, sharing, and amplifying disability media and culture. Alice Wong is a disabled activist, media maker, and consultant based in San Francisco. She is the founder and director of the Disability Visibility Project, an online community dedicated to creating, sharing and amplifying disability media and culture. You can find her on Twitter: @SFdirewolf https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/b4d95afb-cfec-409a-a3e0-2993fd90febd/HBKRH+Art+Exhibition.jpg Disabled Creatives - Holland Bloorview Kids Rehabilitation Hospital's (HBKRH) Art Exhibition: Illuminating a Hidden Narrative Melanie: So often the arts are dismissed - silenced - defunded. When that happens, disabled creatives are dismissed - silenced - and their work goes unpaid. When we do not make space for the arts we suffer the consequences, individually and as a society. The arts are a way for us to express ourselves, to tell our truths, to illuminate social issues, to offer up solutions, to share, to invite, to instigate, to rectify... to... to... to. We need to know how young people with disabilities “feel about navigating their sexuality in healthcare settings.” Forget the quantitative survey measures, the comment card entries, the graphs and charts. We need to FEEL this experience. https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/acc7d858-c500-4a19-92ea-d49830c6f9ff/Disability+Futures.jpg Disabled Creatives - Disability Futures Virtual Festival 2021 Melanie: My sister Meagan sent me a link to the Disability Futures Virtual Festival (DFVF) on July 19th, 2021 - the day it started, so I was unable to attend. I saved the link, telling myself I would get back to it to learn more. The months passed. I am trying to slooooow down... and to take the time to investigate. Sometimes we are so focused on producing that we forget to stop and fill up. So this is me... stopping to fill up by watching the recorded sessions that took place last summer. Over the course of the last week, I watched them and oh my goodness. I messaged Meagan to thank her. She wrote back "Tell me your thoughts". You know when you're so "in" something and it is hard to find the language to describe it because you are still exeriencing it? So it took me a moment. I said the simplest way to decsibe how I felt was "I remembered what I forgot". I had forgotten how deep my passion is for the art created by others and for the art that I create. The last few years have been a re-wakening for me. This is one more piece that helps me make sense of the world and encourages me to move forward - in my time and and in my way. So thank you sweet sister Meagan! Festival Sessions: Disabled Ancestries, Spaces, Histories and Stories. Disability Prtraiture. Bodies of Wisdom: Disability Justice X Climate Justice. Choosing Ourselves and Each Other: Queer Disabled Legacies, Desires and Dreams. Description, Language and Access. A More Inclusive Community - The Power and Presence of Indigenous Disabled Stories. Memorial To Things We Don't Know. Disability Futures: The Disability Futures virtual festival was guided by the Disability Futures fellows and seeks to present their ideas and artistry on their terms.Participating fellows include: Alice Sheppard, Alice Wong, Christine Sun Kim, Eli Claire, Jeffrey Yasuo Mansfield, Jen Deerinwater, Jerron Herman, Jim Lebrecht, John Lee Clark, Leah Lakshmi Piepzna-Samarasinha, Mia Mingus, Navild Acosta, Patty Berne, Perel, Riva Lehrer, Rodney Evans, Ryan J. Haddad and Sky Cubacub.It was produced by Ford Foundation, in partnership with The Andrew W. Mellon Foundation and United States Artists. We are incredibly grateful to each team member's contributions. Darren Walker (President, Ford Foundation): I hope this festival will help deepen your awareness of current and emerging practices and content. Your engagement and support of disabled creatives and collaboration across artistic and disability communities is needed. https://t6talk.com/ableism daily 0.75 2023-10-04 https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/9ab67e67-1440-4cd7-b5e3-2f3fe826a8cb/Im+not+your+inspiration+thank+you+very+much_Stella+Young.jpg Ableism - TED Talk “I'm not your inspiration, thank you very much”, by Stella Young Wikipedia: Stella Jane Young (24 February 1982 – 6 December 2014) was an Australian comedian, journalist and disability rights activist. Melanie: Have you heard of the term "Inspiration Porn"? It is a term that was coined by the late Stella Young, and in this 9 minute video she eloquently lays it out for us. I am still educating myself on this term. I think I have it and then there's a "but...". I would love to have a group discussion on this so I can gather other perspectives. If you have thoughts on this subject... please let me know. TED Video Description: Stella Young is a comedian and journalist who happens to go about her day in a wheelchair — a fact that doesn't, she'd like to make clear, automatically turn her into a noble inspiration to all humanity. In this very funny talk, Young breaks down society's habit of turning disabled people into "inspiration porn." https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/470a03de-e08e-4846-b6b1-0b21986d85e7/Ableism_Dismantling+Ableism+in+Ontario.jpg Ableism - Dismantling Ableism in Ontario Melanie: In 2019, TVO's The Agenda in the Summer host Nam Kiwanuka interviewed Sarah Jama on Dismantling Ableism in Ontario. Sarah is "A community organizer based in Hamilton, Ontario with a passion for community engagement, disability justice, and activism." By listening to this interview, I learned about organizations and work being done in a city that is only 20 minutes away from where we live. We can find a whole network of people doing amazing work in our neighbourhoods! So often we can become discouraged or feel alone... by reaching out to community organizations we build bridges and connections. We do not have to be alone, we can join forces, build community and move forward together. To watch the interview, click on the link at the bottom of this post. Here are links to organizations highlighted by Sarah... Sarah Jama's Website Disability Justice Network of Ontario Acorn Canada Environment Hamilton Hamilton Centre for Civic Inclusion https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/61f253a0-c887-4bed-893d-e896d34c37a6/Ableism_Melanie+Earle.jpg Ableism - A Few Words About My Ableism Melanie: On the About page, my section ends with "She is currently working on expanding her knowledge of SCI and the SCI community, fulfilling her passion for working with people and making connections." I have expanded my knowledge of SCI and I have been engaging with the SCI community. In doing this work, by speaking with others, by following the trails and jumping down the rabbit holes, I have come to realize that I have been expanding my understanding of disability and the larger disability community. Part of this work includes recognizing and challenging my ableism. It is uncomfortable... and it should be... but that should not stop us from moving forward. We must own it and grow from it. Wallace and I are both looking forward to having conversations about ableism and we hope that you will join us! https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/b9667810-203b-4b6e-8fe1-b1e2aa871bac/Equality+and+Human+Rights+Commission_TALK.jpg Ableism - Talk Melanie: Our friend Sheri told us about a video called "Talk". She often uses this video during her advocacy work with organizations looking to improve their AODA policies and procedures. After watching it, we knew it would make a great addition to our website. For those of you looking to work on your ableism... this is a great place to start. Thanks Sheri!! To watch "Talk", click on the link below. For the audio describe version, click HERE. Equality and Human Rights Commission: ('Talk' is a) DVD originally produced by the Disability Rights Commission in 2004. 'Talk' portrays a society in which non-disabled people are a pitied minority and disabled people live full and active lives. https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/e7bacdc7-8c67-4391-87fa-db56fbc807af/Ibram+X.+Kendi_Ableism+and+Racism_Roots+of+The+Same+Tree.jpg Ableism - Ableism and Racism: Roots of The Same Tree Melanie: My sister Meagan sent me the link to this podcast. I listened to Dr Ibram X. Kendi's book How To Be An Antiracist over the course of a couple of weeks during my walk though a local cemetery. I am working on recognizing and assessing my biases, racist beliefs, attitudes and behaviours. “Do the best you can until you know better. Then when you know better, do better.” Maya Angelou. There is a lot more for me to read, to discuss with others and to learn. Rebecca Cokley is an American disability rights activist and public speaker. To link to to the podcast Ableism and Racism: Roots of The Same Tree, click on the link below. Podcast Description: Rebecca Cokley is one of the country’s leading voices on disability rights, and centers race in her analysis and advocacy. She is the founding director of the Disability Justice Initiative at the Center for American Progress, and served in the Obama administration from 2009-2013. Dr. Kendi sat down with the California native for a frank conversation on the intersections of ableism and racism in America, the historic civil rights legislation governing both, and what we can all do to advocate for a better future for people with disabilities. https://t6talk.com/sap daily 0.75 2026-01-22 https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/286231e9-22a1-47f3-a906-0584311fe00c/Facebook+Town+Hall.jpg.jpg Sexuality & Access Project 2.0 - Virtual Sexuality and Access Town Hall Thanks to everyone for making our virtual Sexuality and Access Town Hall on June 25th, 2024, a success! To access the recording, click on the image or click HERE. https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/71f67360-d37f-4d85-a6a0-e406800a86b4/SAP2023+Summary+Report.jpg Sexuality & Access Project 2.0 - Sexuality and Access Project (SAP) 2023 Summary Report The Sexuality and Access Project (SAP) 2023 Summary Report provides a thorough overview of Phase 1 and will be used to steer us through Phase 2. Click on the image to the right, or HERE to access the full report. https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/3acb9f94-bc45-4155-b12a-c1710c3a227d/Melanie+and+Wallace+SAP2022.jpg Sexuality & Access Project 2.0 - t6talk: Melanie & Wallace We are Melanie (she/they) and Wallace (he/they) of t6talk. As disability advocates, we believe in the importance of community and making connections. This project focuses on a subject near and dear to our hearts… the importance of Accessible Sexual Health within the disability community. To learn more about us, explore this website. We would love to hear from you… https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/9f3aa3b0-f14e-4691-bc9b-364069642e2c/TK+and+Thyra.jpg Sexuality & Access Project 2.0 - Advocates: Thyra Calvert & TK Pritchard Thyra (she/they) and TK (they/them) are a couple of feminist dreamers, community builders, advocates, educators and… an actual couple. Thyra is an inclusive sex and relationship therapist, specializing in topics of disability, sexuality, gender, ethical/consensual non-monogamy, and their various intersections. TK is a non-profit leader, currently as the executive director of the National Abortion Federation Canada after serving as the executive director for SHORE Centre, as well as a manager at the sexual assault support centre. Thyra and TK both exist in the world as queer, genderwild, disabled people, raising kids, pets and an unreasonable number of plants. https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/f7314b82-f5f3-43bc-aff0-65fbabb1fdb0/Lindsey+Thomson+and+Kevin.jpg Sexuality & Access Project 2.0 - Community Engaged Scholarship Institute (CESI) - University of Guelph: Lindsey Thomson (and Kevin) Lindsey (she/her) is a community engagement professional who facilitates and supports course-based community partnerships in research across a variety of undergraduate and graduate courses at the University of Guelph. She is passionate about community engagement and anti-oppressive research practices and is also a first-year PhD student and emerging scholar who collaborates among neurodivergent, queer, and disability communities. She is a white settler who lives in Guelph, Ontario, with her partner CJ and Kevin. https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/e7ad213c-f502-412d-a849-dcb4d3246351/Elizabeth+Jackson.jpg Sexuality & Access Project 2.0 - Community Engaged Scholarship Institute (CESI) - University of Guelph: Dr. Elizabeth Jackson Elizabeth (she/her) is passionate about critical community engaged scholarship, arts-based research, interdisciplinary scholarship, and storytelling. She has witnessed their amazing potential to create meaningful, positive social change. Liz is employed as Director of the Community Engaged Scholarship Institute at the University of Guelph, which facilitates mutually beneficial community-university research collaborations. In that role, she provides leadership and strategic direction to the Institute and guides staff members in the development and implementation of all programs. Liz' non-profit and activist work centre around arts and mental health, community change, and anti-oppression efforts. A lover of song and story, Liz firmly believes in the potential of art-based community making to increase well-being and contribute to struggles for social justice. https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/a0e6c933-62fc-42e2-9177-3d38f57ba402/Adam+Davies+SAP2022.jpg Sexuality & Access Project 2.0 - University of Guelph: Dr. Adam Davies Adam (they/them) is an Associate Professor with the Interdisciplinary Studies School of Fine Art and Music. They are a queer, feminist, and interdisciplinary critical scholar, Registered Early Childhood Educator, and Ontario Certified Teacher (K-6), who holds a diverse research platform and interests. Their PhD is in Curriculum Studies & Teacher Development with collaborative specializations in Sexual Diversity Studies and Women & Gender Studies from the Ontario Institute for Studies in Education, University of Toronto. Much of their work utilizes queer and post structural-theories to analyze systems of gender and sexuality as it pertains to experiences of children and youth within early years and K-12 school settings. Adam’s doctoral research focused on affect theory, the construction and regulation of queer intimacies, and masculinities within queer men's online spaces using critical theory and cultural studies lenses. They also conduct research on inclusion within various theoretical frameworks as it relates to both disability and gender and sexuality in K-12 schooling and early years settings. Further research interests include the sociology of childhood and youth studies and socio-cultural constructions of childhood and adolescence. https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/fe528bd8-c93e-4f6c-b129-9bb38a93fa96/Isabella+Jakusik.jpg Sexuality & Access Project 2.0 - University of Guelph Graduate: Isabella Jakusik Izzy (she/her) is a recent graduate from the University of Guelph with a degree in Psychology. She is interested in researching the intersections of sexuality and disability. Izzy is most passionate about fostering social support by designing programming for people with disabilities, and LGBTQ2IA+ folks. https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/c2e3acaf-8d33-4304-a136-ef2141073ab3/Kayla+Orr.jpg Sexuality & Access Project 2.0 - Note: Kayla is no longer with SHORE Centre and is no longer an active member of the team. We with here every success in her future endeavours. SHORE Centre: Kayla Orr Kayla (she/her) is the Executive Director of SHORE Centre a non-profit organization located in Waterloo Region that offers sexual health education and medical services. She is a fierce advocate for abortion access, reproductive justice, and patient-centred care. While Kayla is well known for her warm and empathetic demeanour, she is perhaps best recognized for her ability to move mountains and cut through the bureaucratic red-tape that inhibits equitable access to healthcare. https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/342a2033-2e07-491f-9b3d-2889b54afcb7/Ashley+Cole.jpg Sexuality & Access Project 2.0 - Note: Ashley is no longer an active member of the team. We cannot thank her enough for all the hard work she put into Phase 1 of the project. We wish her all the best with her PhD. University of Guelph: Ashley Cole Ashley (she/her) is a PhD student at the University of Guelph in Industrial-Organizational Psychology. As a PhD student, she study’s employee voice. She has also conducted research on the employer’s perspective of accommodating employees with Mild Cognitive Impairment and Early Onset Dementia. Ashley got involved in the Sexuality Access Project through her work at the Community Engaged Scholarship Institute as a Project Manager. Within her time at the Community Engaged Scholarship Institute, she has worked with various community partners to conduct community engaged research. https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/e5da9008-6021-4e50-b820-9a4a750edc9d/Moira+Forster+SAP2022.jpg Sexuality & Access Project 2.0 Note: Moira has graduated and is no longer an active member of the team. We would like to acknowledge her invaluable contributions to Phase 1. We wish her every success in her future endeavours.on sexual health support for individuals with disabilities. University of Guelph: Moira Forster (she/her) Hi! My name is Moira Forster, and I am an undergraduate student at the University of Guelph. I find passion in learning from the perspectives of others, especially from underrepresented perspectives belonging to individuals within minority communities. During my time with this project, I have had the opportunity to research and understand the ways in which individuals with various disabilities struggle psychologically, socially and systematically to find sexual health support. For this reason, I feel incredibly grateful to be a part of this work and hope that our efforts will contribute to furthering the acceptance of and education on sexual health support for individuals with disabilities. https://t6talk.com/support daily 0.75 2024-05-24 https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/30346d40-b203-43ec-9564-11bf6bb33add/Support_Adam_Work+Machine.jpg Support - Replace Adam's Work Machine Wallace & Melanie: It's important to have the tools you need. Adam needs to replace their laptop. We invite you to click on Adam’s picture to lean more about them and why they are looking for a replacement machine. We do what we can when we can. June 9, 2023 Update: Adam raised the funds needed! Hooray! So this Support Request is CLOSED https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/25428363-1c5a-450d-bf89-cef8147c8093/Support_SHORE+Centre.jpg Support - SHORE Centre Wallace & Melanie: A great organization doing important work! They are also one of our partners working on the Sexuality & Access Project 2023. For more information on SAP2023, click HERE. You can donate towards this project OR any aspect of their organization that speaks to you. About: The Sexual Health Options, Resources & Education – SHORE Centre was founded in 1972 and originally named Planned Parenthood Kitchener-Waterloo, followed by Planned Parenthood Waterloo Region. The Centre grew out of the Birth Control Centre at the University of Waterloo in order to provide all residents of our community with sexual health information and support. SHORE Centre’s founders included a librarian, a social worker, a doctor and nurse, Catherine “Kitty” Francis. Vision: SHORE Centre imagines a community that values sexual health and reproductive freedom as essential for people to live their best lives. Mission: SHORE Centre offers exceptional and inclusive sexual and reproductive health services in our community that uphold the dignity of everyone. https://t6talk.com/bladderandbowel daily 0.75 2024-10-03 https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/33631e92-0268-4250-99bb-c0a03da51ab6/Bladder+and+Bowel_How+I+Sterilize+Catheters.jpg Bladder & Bowel - How I Sterilize Catheters, by Wallace Melanie & Wallace: We created this video two years ago. We held off on posting it, hoping that the #peeforfree campaign would educate and change the minds of the powers that be, giving free access to the supplies needed to empty our bladders. If people, who do not rely on catheters, went into a public bathroom and had to pay to use a stall, there would be an uproar. What if they outfitted the bathroom in your house with a pay for service? So... until that magical day comes, all of us use strategies to stretch our resources. This is just one idea - and it may or may not work for you. We are looking for other strategies too! Contact us to share how you manage your bladder and bowel routines. https://images.squarespace-cdn.com/content/v1/5ff900a4d7c44740fac00dac/8cb3ff7f-069a-4fe2-8888-78ffe1dd9bf9/Bladder+and+Bowel_SCI+Supply+Inc.jpg Bladder & Bowel - SCI Supply Inc. Melanie: Wallace and I like to add links to companies that friends/peers recommend. Our friend, Sheri Roberts (ILWR) talked about SCI Supply during a peer chat recently (run by Mike Johnston in Collingwood). I asked her to write about why she recommends them. Sheri Roberts: Bladder and bowel care is such a personal topic and having a company that you can truly trust working with you to purchase products from, is so important. SCI Supply is owned and operated by an individual with a spinal cord injury who lives it every day and also has an incredible understanding of the products disabled folks need to use daily. They provide customized, personal service at a great price!