I’ve been an activist for the rights of the disabled for over 50 years. I have watched, participated and benefitted from some of the many changes that have taken place in my life time.
The other thing I have witnessed repeatedly is that for every two step forward we wind up with one step back. I see this with my immediate family and society in general. I have five siblings (all able bodied) that just see my activism as Terry sounding off. I’ve dealt with too many program administrators that wished I was just sounding off. What my family, and many of those around me, don’t realize is that these programs don’t just fall out of the sky. That the reality is if you want it you may have to fight for it. That’s why it took me 54 weeks to get a new wheelchair!
Pretty well all of my siblings picked a career and stuck with it for their entire life’s. They choose a silo and stayed there which is not uncommon. Pretty well all of those careers were in the transportation sector in one way or another so their perspective on life is very different from mine for many reasons. I have a sister who is a professional pilot, a brother who was an air traffic controller, another brother who worked for a major airline all of his life before retiring, an older brother who started with the railroad at age 17 and retired from there.
My employment history is much more eclectic and focused much more on the humanities. I’ve been a mental health therapist in a major city centre hospital, worked for a number of non-profits in a variety of roles including executive director, worked as a business analyst for Dunn & Bradstreet (that one convinced me that the world of ties and suits was not me), drove taxi in Toronto, worked as an employment counsellor and the business development consultant for the federal government, as a policy analyst for the BC provincial government and a fair amount of entrepreneurial work including having my own restaurant.
However, based on feedback, my siblings don’t see those as “real” jobs and basically subscribe to the believe that there are social programs out there to “take care” of the disabled. I not only find that concept repugnant but also disappointing as it just emphasizes how little my family really know me. Growing up more in the children’s hospital rather than the family unit has really left me basically without a family.
With that said I have pursued my life in as normal a way as possible and all the time being an activist. Now don’t get me wrong here, there have been many positive moves forward with recognitions that even 35 years ago were unheard of. Now we are seeing many of those same rights and programs being eroded or outright disappearing. When I hear family members telling me I’m making a big deal out of nothing I do get upset. And for a family that has had a brother with a physical disability since I was three there level of understanding is terribly lacking. My proof for that statement, not one of them has a wheelchair accessible home and see no problem with that.
Two things really got me going lately. The first was Ann Coulter‘s recent comments encouraging American law makers to refuse citizenship to “over weight girls” and immigrants with a disability or visually impaired. These are her statements and ideas she reiterates in her new book “Adios America”. Now one has to understand that Ms. Coulter is pretty far right however due to her influence these are pretty scary concepts. Unfortunately I have family members who would jump on this women’s bandwagon without a second thought.
The second was the recent case of a First Nations individual who is a quadriplegic, Gerald Francis. His story is atrocious and could have been avoided in so many ways. I understand pressure sores and am well aware of how life threatening they can be. People ask me regularly if I’m comfortable due to what appears like a lot of squirming in my wheelchair. I am very lucky to have total sensation which results in me “squirming” when the circulation gets iffy in my ass and legs. That’s a luxury a quad doesn’t have due to no sensation. That inability to feel your skin breaking down can lead to pressure sores at home but shouldn’t be happening while in a hospital bed.
There is no way the pressure sores described in the linked news story happen overnight in a hospital bed. In the Ann Coulter story they mention her refusing to hug an immigrant while Gerald case raises the spectre, in my mind, of sounds like hospital staff not wanting to “touch an Indian”. That may sound harsh but these pressure sores didn’t happen over-night but are the results of months of neglect. I am left questioning why. This is sounding too much like the Brian Sinclair incident in Winnipeg.
So I am at it again. This isn’t a fight for “dis”ability rights, this is a fight for “rights” and that requires the whole community. Enough is enough and we, as disability activists, cannot do it without the involvement of the community. We need the new generation of disability advocates to step up to the plate and remember their history. We need them engaging their friends, families and allies while not giving those allies a way out. It’s great to maximize one’s independence but it shouldn’t come at the expense of letting people think it is alright to ignore these issues.
We have to make our allies aware of how important their involvement is because the day is coming when they will need some of those services. It is a bugger when you get to a point where you need a right or service just to discover it is no longer there. Health care is one of those areas really being hit these days. Get people involved while you still can. If my generation had been as good at developing allies as we should have been then many of us wouldn’t still need to be an activist!
Just one man’s opinion!