Advocacy or Education?

This week an older gentleman from my church died. He was 85. He contracted polio when he was a child and lived in a wheelchair most of his life. For a small man living from an old style wheelchair (probably heavier than him), he did pretty good. When I met him many years ago he was still living on his own in my condominium building, with occasional help from friends and neighbours. He moved here from Montreal when he was 40 to try life on his own. His mom told him he could never do it and needed to be with her. He was never going to amount to much according to his mother's generation. He proved them wrong. He worked and lived like anyone else.....well maybe not like anyone else. He had tenacity. He was always pushing for better access. He wanted his life made a bit easier but also for the lives of others. Apparently he regularly showed up at City Council meetings to voice his concerns over the unsafe nature of curb dips at corners. He always had some issue he was advocating for and at times it was a bit tiresome for people around him. Was it ever going to be good enough for him? Would he ever be  content with how things were? Probably not. Now he's at peace.
I think too of my life and it was quite the opposite. I was told I could do all sorts of things and basically told to lead a normal life - including chores at home like my sisters! I went to school, had summer jobs during university, moved out on my own, got a job...in some ways, I desperately tried to be "normal". I didn't want to ruffle feathers around me because it was so important that people liked me. However as I learned more and more in university I did start to take a stand. For example while studying biomechanics it seemed that all the examples given to us were from elite sport. Can we figure out  a way to get this triple jumper to jump 2 cm further? Can we change the free style swimming stroke to shave off 1/10 sec? Did I really want to spend my career doing these things? I wanted to figure out ways to make kids with cerebral palsy or spina bifida walk a block instead of 2 metres. I wanted to see a child in a wheelchair be able to propel without getting shoulder pain. I'd love to know if new ergonomic crutches really can make a difference to those with amputees. The more I work in this area the more passionate I get but I am not attending city council meetings for better access. I don't nag when barriers are in my way, because I am not the only person.
Maybe I am too  quiet at times and don't speak up for those less fortunate. I'm not always the best advocate for disability issues but  I do believe quiet subtle education can make a difference in the long run. Educating our future doctors about patients who live with chronic illnesses and disabilities through our Health Mentors Program at UBC, will hopefully help change the attitude towards disabled patients struggling to manage their disease day after day. Educating future engineers, kinesiologists, physiotherapists, occupational therapists and professors about how to address people with disabilities and include them in research and other decisions about their lives will build up this community instead of continuing to oppress them, labeling them as unfortunate patients or just research subjects to study.
I admired my friend who passed away this week - his zest for life and quest for justice. He did what he knew how to do. I hope that I have that same zest and tenacity to slowly work for change so that folks with mobility impairments or other disabilities know they matter and their lives are of value. I know my life matters.

Are we making a difference?

I’ve just spent the last two weeks traveling in the U.K. and Europe for meetings, conferences and visiting friends. It was exciting to see the research that people are doing in other countries pertaining to mobility and improving function for people with spinal cord injuries. However once I got outside  the sheltered world of the research centre, hospital or conference centre the environment that people must negotiate is still challenging. There are many considerations being made such as more lifts (elevators), slopes to curbs, and automatic doors that make life easier but because it is still inconsistent whether an accessible route is available it is always a guessing game how we might get somewhere. Also because the cities are historically old, they keep the old cobblestone look even though they are the most difficult surface to negotiate and are actually painful. It’s painful to be the one in the chair and painful for my husband pushing, if he’s available.

The dichotomy between the precise research that we do both in my lab and in the labs in Europe and the real world leave me to think are we really doing the right research. Yes, I am a biomechanist and forces and angles are what I like to measure, but can I really make a difference when the lab does not reflect the true world? I am so fortunate to have a relatively easy life in Vancouver where accessibility is pretty much expected in almost every public venue so maybe I am only reflecting my work to what I see at home. But, when I travel it is so much different. Even Europe has developed standards for accessibility that have come a long ways. I was able to see a lot compared to what I might have seen 20 years ago, but the developing world has even more barriers  for people with disabilities, not just physical barriers but social and attitudinal barriers. Are we making a difference? 

Introduction

I've decided to begin a blog back in March 2012 to log my thoughts about life as a wheelchair and disability researcher at UBC in one of the most beautiful and accessible cities in the world (Vancouver), in a state of the art research centre on spinal cord injury (ICORD). I feel incredibly fortunate to be here since we have such amazing access to go anywhere in a wheelchair due to the accessibility laws we have. This includes public buildings, shops, universities, parks and even boats (disabled sailing clubs).
I spent my university sabbatical in Sydney Australia last  year and although it is my second home (thanks to my Aussie husband) and I love being there, I still found getting around incredibly challenging and still the culture of disability quite different than here. People are more than happy to help you out when you face a barrier and that's lovely, but the policies and structures around disability don't push for universal access so you don't need to ask for help. I love the fact that people are wanting to help those with special needs but somehow it is still hard to get across, that people want to move freely in the environment without needing help or getting so tired.
I'm currently in Amsterdam for work meetings and then off to London for a conference (International Society on Spinal Cord injuries - ISCoS 2012) along with catching some Paralympic activities. Europe is a lovely place to visit and I feel incredibly privileged to be here but again getting around is not that easy. If it weren't for my husband Brian, I wouldn't enjoy it nearly so much. He can get me on "trains, planes and automobiles...." so much easier than if I were on my own.
Working with folks around the world to address this issue of wheelchair mobility and function is my passion, and I am blessed to meet some fantastic folks who believe we need to find ways to improve ability and decrease injury. It's important that we are not annoying sounding gongs on this issue but are folks who work to provide evidence that we can give to policy makers, wheelchair engineers, physicians and therapists, families, etc. It's for anyone who wants information before making a decision!
As I continue to write  this blog and try to put my thoughts down, please feel free to add your thoughts. I may be more or less eloquent at times. I may have a more emotional blog or sometimes it may be more academic. I hope you can be open to the spectrum of thoughts I may have as I venture into the blog world to share on the topic of disability and probably more specifically, wheelchair mobility.