Our Stories
This space is for people to share their journey “out loud”. We want to hear from disability community. The good, the bad , and the ugly. We want it all. Your story can be short or long. We believe that we become stronger by sharing our stories with others. This can be an invaluable and cathartic experience. Pass on your wisdom, the mistakes you’ve made and the hurdles you’ve conquered - big and small. This is a great way to connect and learn from others who have lived experience.
Please Note: we may include our names on these pages, everyone else will be identified as “Contributor” or “Peer” unless express permission has been given. If you have any comments or feedback on anything posted, please contact us.
Subject: t6talk Interview with Teisha Gillespie on her podcast ‘Not Your Average GOAT’. Melanie & Wallace: Fearlessly Breaking Chains from Sexuality & Disability, to Femininity & Beyond. Part 1 & 2 (episodes 24 & 25).
Posted: May 24, 2024
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.
Subject: 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.
Posted: October 4th, 2023
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.”
Subject: Wendy Raposo remembered… Sunday, November 16th, 1975 to Sunday, July 16th, 2023
Posted: July 28th, 2023
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.
Subject: Representing
Posted: June 9, 2023
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!
Subject: Re-Inventing The Wheel
Posted: January 5, 2022
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."
Subject: To My Aunt Barb and Uncle Dale
Posted: July 23, 2021
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
Subject: Redefining Me… The Story of Ben Clark
Posted: May 18, 2021
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
Subject: Hello… my name is Phil
Posted: April 30, 2021
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.
Subject: Wallace’s Journey
Posted: April 11, 2021
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.