When I was seventeen my body started to fall apart, joint by joint, first with my hands and wrists then with my shoulders and collarbones and eventually all the way down to my knees, ankles, and toes. Within a year of my high school graduation I was forced, because of my health, to quit my full time job of three years, quit college where I majored in Creative Writing and give up my scholarships, quit driving, quit sports, and quit everything that I thought, at the time, made me me. I couldn’t imagine a Heather that didn’t drive or who didn’t race down a ski hill or hit golf balls. My world narrowed and for six years I only left my home for medical appointments and occasionally when my mum forced me out to get some fresh air. I didn’t want to run into people who knew me before I started having health issues, I didn’t want to see the look on their face and the tilt of their head when they learned my full time occupation was trying to figure out what was wrong with my body. I didn’t want to hear that “oh, such a shame, you had such potential”. I always wondered why there was an assumption that my potential was forever gone. I clung to the hope that we would figure out what was wrong and I could reclaim my potential.
I was fortunate in that I lived in a daycare and the kids didn’t care if one day I couldn’t stand up to play or if one day I could only use my legs but not my arms, they just cared that I was there and paying attention to them. Those little rascals saved my sanity because they never tsked, they never tilted their head as they grieved the loss of my potential, they adapted, they adjusted, and they enjoyed what I was able to give them. They understood, more than most, that I still had a lot to offer.
Eventually, after I requested all my medical records, of which there was a mountain as I was a regular in the ER from a young age with torn ligaments, sprains, and shattered bones, I discovered that I had been diagnosed by an ER doctor when I was 12 with Ehlers Danlos.
Unfortunately while he wrote this in my chart he did not tell me or my family and so it wasn’t until I was 22 with my world upside down that I discovered his diagnosis.
Ehlers Danlos is a variety of gene mutations that cause problems with collagen, the material that provides strength and structure to skin, bone, blood vessels, and internal organs. It is marked by several issues, in my case, Type 3 which is extremely loose joints. I had always known that my body moved in ways other people didn’t. I would stand with one foot backwards, I could move my head around like an owl, I did contortion tricks, but I didn’t realize it was harming me. My mum would say “that’s going to hurt you one day” but I always figured one day would be in my fifties or sixties, not in my teen years. That same year I found a great doctor and I was diagnosed with five types of arthritis, in addition to my Ehlers Danlos. The Ehlers Danlos was the key as it is rare and not well known and a complicating factor to all my other arthritis’ because with arthritis your joints tighten and while my joints did in fact tighten they were still more mobile than most because of my hypermobility. Unfortunately traditional arthritis treatments don’t work on me as they try to improve mobility whereas I still have too much. I was able to learn how the average person’s body moves and where the joints should stop and I retrained my body to adjust my movements to fit within those perimeters which has helped negate further damage but it doesn’t help with the pain and health issues I already have. While I was disappointed that there was no magical cure or even a treatment plan it helped just to have a name, to validate my pain and my six years of not being able to live the life I wanted.
The other thing that saved my sanity was reading and through reading ! realized that millions of Canadians have chronic pain but it is not talked about very often and you can’t just look at a person and know whether they have chronic pain. It wasn’t until I was 22 when I started to use a scooter and then at 23 when I started to use a power wheelchair that my disability became visible. For six years my disability was invisible and highly doubtful to many people because they could not see it. I decided that I needed to seek help, not from professionals, many of whom doubted my pain before my rare diagnosis, but from people experiencing the same situation. At 23 I made one of the most shocking decisions of my life. I decided to start a chronic pain support group. What was shocking was that I was the type of person who would blush
if someone in the same room was getting in trouble, I couldn’t fade into the wallpaper enough and here I was organizing a group in which I would be standing up and speaking in front of everyone and sharing very personal experiences. But through my health issues I had somehow found a voice, and a voice that needed to be heard. It was shocking but it was also one of my smartest moves I ever made and the first step on an amazing path to where I am today. The local paper did an article and I had phone calls from about three people. I was sure no one was going to show up, I was going to sit alone in a room by myself for two hours.
The night finally arrived and by the end of the two hours 65 people had attended. There was a hunger for support, for an understanding of what we were going through. A support, much like the Open Door Group offers to people trying to take the first step in their own path.
It was through leading this group that I realized there was a need for improved accessibility and so I joined a regional accessibility committee with the support of the chronic pain group. And when that committee had to go through too many departments and took longer than I had the patience for it was the committee that supported me in my idea to start my own non profit organization. What really spurred me on was transportation in Maple Ridge, at the time I was only able to get on the bus 50% of the time because either the ramps were not operating because of the age of the fleet or the drivers didn’t want to deploy the ramps so they would say that the ramps wouldn’t operating. I wasn’t the only person with this problem so I contacted TransLink but I soon learned that TransLink doesn’t respond as quickly to Heather McCain individual as they do Heather McCain Executive Director of.. So I started Citizens for Accessible Neighbourhoods, again with the support of my chronic pain support group. They gave me the assurance, the courage, the confidence, that I knew I had but which I couldn’t always readily access. They also made me want to be the best I could be so that I could be a good reflection on them just as I’m sure clients of Open Door group want to be a reflection on the people who have helper hem with their goals. As I became more comfortable with myself, my disability, my limitations, and my achievements, I started wanting to get back to all that I had loved before my health tripped me up. I became involved in adaptive sports by competing in Boccia and founding and aching a power soccer team. I went as far as I could in competition with Boccia as only certain types of disabilities are allowed participate in higher levels of adaptive sports such as the Paralympics and Arthritis and Ehlers Danlos don’t qualify. That was frustrating but it wasn’t going to change so I joined the board of BC Disability Games Society and set to work ensuring opportunities for other people in adaptive sports. There I met a wonderful woman, Jane Samletzki, who really helped me, my organization, and my future, by taking the time to teach me the ropes of running a board and an organization. She was kind and funny and we immediately clicked and it was easy to learn with her without feeling like I was being taught.
My organization continued to expand and a father of one of the kids I coached in power soccer became the webmaster of CAN’s website and all of sudden CAN was getting e-mails from around the world. I realized that chronic pain, invisible disabilities, disability awareness, and accessibility were affecting lives all over and there was no talking about it, no open dialogue. People assumed they could tell a person’s health by looking at them and this assumption was hurting people because their pain, their health issues, their employment and financial problems, weren’t being taken seriously because they “looked fine”. I thought of a phrase I often repeat to myself “be kind for everyone is fighting a hard battle.”
I wanted to do more, I wanted to support those who believed in me. I walked into our local paper’s office and said I had an idea for a monthly column, would they give me space? The editor knew me because the paper had done stories on my chronic pain support group, my organization, and my power soccer team and he said to write a couple example columns and he would see. I did so and all of a sudden I had a column. Each month I found a run, or a fundraiser and I interviewed a person with the corresponding health issue, visible or invisible. I had a tremendous response. People who had never talked to others about their pain emotional or physical, their experiences, began to share their stories. I had people coming up to me to thank me for bringing awareness into the mainstream, it may not have been their exact story but it was a similar experience and one person speaking up gave others the confidence to try to speak up about their own experience as well.
This is very much the motto under which CAN works, one voice joined with others creates change. We don’t often realize that people are waiting for permission to speak their own story so I try my best to make sure people know I am open, I am open to hearing about the true them. Disability is part of the person and their journey, just as marriage, divorce, health, sickness, prosperity or lack of prosperity is part of who they are. It frees people to talk about these things because when they are hidden they feel wrong and dirty and there is nothing wrong about having a body or a mind that operates differently from another.
The response to the column spurred me on with my organization. I wrote that column for three years but stopped when I moved to Vancouver. After an eighteen month hiatus I started the column back up in preparation for the 2009 BC Disability Games which were taking place in Maple Ridge and Pitt Meadows. This time I wrote about a different adaptive sport and athlete each month. I was also in charge of the accessibility audits for the game and I did disability awareness training for all the volunteers. My training was so popular that we had people not involved in the games ask to take it. I created two short dialogues and BC Games videoed them, both of which are posted on CAN’s website. It is our most viewed page. One video speaks about the proper terminology for people with disabilities and the second is a list of ten tips for interacting with people with disabilities.
I believe strongly in the power of words. People-first language, which places the person in front of the disability is very important to me because we are not yet at a place in society when everyone realizes that the disability does not make the person, the person happens to have a disability. I am not an arthritic person, I am a person who has arthritis. I was also conscious about not doing a video of ten tips on how to deal with people with disabilities but rather how to interact because we are not a population to be dealt with, we are part of the overall population and we all interact together.
I am a strong advocate of changing the dialogue and I ask that you all try to change the dialogue starting tonight. Understand that labels are limiting and words are powerful and sometimes the one thing that can hurt the person the most is minimizing language. People want to share their stories, they want to expand their horizons by being honest about who they are and what they can do, but when we use words that put them at a different level than us they instinctively shrink back into themselves.
Last year I did a workshop on employing people with disabilities and I met a client from the Open Door Group who works at a theatre in Vancouver. I have since run into her at her job and every time I see her I can see that her job adds shine to her life. The shine didn’t come from someone being nice enough to hire her, it comes from her being given a shot because of her personality and skills and because people support her. She felt safe with the support and the support made her able to access the best of herself and when she accessed that part of herself her health issues didn’t disappear and birds didn’t start singing on her shoulder but she did find a place where she belonged, where she contributed, where she was as a productive person in society and not just seen as a person with a disability.
I’m going to ask something of you tonight, I’m going to ask you not to be nice to people with disabilities, I’m going to ask you to be fair to people with disabilities. Don’t try to help someone because you feel they have a bad lot in life, give them an opportunity when they have the skills, or the promise of the skills. Don’t be nice and put them in a pity position because everyone knows that it is such, be fair and give them an opportunity if they fit. If they are not right for the opportunity, be fair and tell them how they could improve or why they weren’t a fit for that particular position, don’t be nice and try to wedge them in.
Each person with a disability has experienced a different road and as with anything else in life there is good and bad to the situation. For myself, I have come to realize that I am lucky to have limitations physically because I am not the type of person to think about consequences and so those in my family weren’t sure if I’d see 30 because most likely at some point I would have hurtled down the wrong ski hill or driven too fast or kept taking photos of a bear as it charged
me. The negative is all the pain I have to endure day after day. It doesn’t even things out but I understand that my disability has given me opportunities I wouldn’t have had otherwise. I understand that that my lack of thinking about consequences does me well in my business because I jump into things without thinking them through, like booking a room for a chronic pain group and not knowing if anyone will show up but having 65 people come and have the group last for six years with some of the people still my best friends and supporters, or like starting a non-profit organization at 25 without knowing anything about it and six years later it is going stronger than ever and has changed from a two town organization to a provincial organization, or like if someone calls me yesterday and says “our speaker has had to pull out for health reasons can you come and do a talk tomorrow” I don’t think what if I can’t think of something to say (which by the way has never happened to me) I don’t think what if I bomb or what if the audience doesn’t respond, I say yes and charge ahead. What wasn’t safe for me physically is extremely successful for me in the business world and my physical limitations are, in part to thank for that. But a major part of why I don’t have to think about consequences is support.
I don’t have to think about consequences because I know that no matter what I do I will have people on my side, people amazed that I keep saying yes, and keep getting involved, not because I have a disability but because I have a full plate. I never have to question whether someone will be there for me to remind me of what I have achieved and what I will achieve. Just as I support those I love they support me, they don’t hand me things, they aren’t just being nice, they believe in me, in my skills, in my intelligence, and their belief constantly reminds that I have must have something in which I should believe in as well. Community
and support is vital because we know if we fall we have a cushion, and if we fail we have people to listen then to kick us in the butt to keep going again.
I have one particular voice in my head, my grandpa’s, that I hear a lot, particularly a cycle of two phrases I heard over and over again when he was alive “Heather get off your ass and do something” and the alternative “Heather you’re doing too much, slow down”; there was never an in between with him, he never gave me anything without my deserving it and by deserving it it made his support all the sweeter because I wasn’t entitled just by being his granddaughter, and those two alternative phrases with no middle ground kept me grounded and kept me going.
There are not enough words to explain how vital support is, not a helping hand, but support. We have all been in a situation when we have been supported by someone and that support helped us reach inside of ourself and help ourself. The difference is between what is earned and what is given. No one likes to be handed something because of their situation and a disability is not something to pity or overcome, it is part of who we are. It may be the very thing that taught us the skills or characteristics you are interested in and it is part of our overall package.
Many of us in this room have something in our life that was or seemed hard to live with or through to those looking in but we dealt with it in our own way and we learned and moved on or we carry it with us and it is part of who we are. A disability is not something to overcome but rather something that is part of our experience and it becomes part of who we are, some of us just wear it a bit more visibly than other people’s life experiences.
The Open Door Group operates on the fundamental belief that all British Columbians have the ability to succeed and I second that. Success can be achieved in a vacuum, we all need support, encouragement, someone in our corner, and someone there when we don’t succeed the first time or second time or third time but who is there the fourth time when we do succeed saying “I knew it all along.”