Tuesday, September 2, 2014


A lot of people were shocked by true confession that not being able to walk is not the worst thing about being in a wheelchair, at least for me. A week ago I ranked having to ask people for help, not being able to reach things on the highest shelf and often being left behind when my friends decide to go up a floor as aspects that affect me every day much deeper. Perhaps it's because today my wheelchair is fused with the essence of my being that I can't imagine my life otherwise The world as I know it I experience from a perspective of a wheelchair. All my future plans, my profession, where I go and what I do involve me having a disability. The way I see myself, the way others see me, how I think, what my dreams are, what inspires me is all linked to it somehow. I have 35 years of experience in Cerebral Palsy and you could say it's all I kmow. Who would I be if this lifetime of disability didn't bring me to this place and this moment? Maybe I wouldn't like that person. As we develop the "Tell Us Your Story" campaign we get to talk about disability in great depth. About what it means to me and what it means to other people. And how the outside world sees it. I've of course walked before. When I was a child my parents would grab me under my arms and powered by their strength I'd run around with my cousins. The Peto Institute put me in big, heavy leg braces that would go into my orthopedic shoe and hurt my feet. In school my parents would grab me under one arm and walk me up the stairs to class. By the time I got there I was exhausted. I guess to me any form of walking always meant pain. Without braces my knees would be perpetually bent and my legs would feel tired very quickly. I've done it all, walking sideways up the stairs holding onto railings, walking with a person in front of me going backwards holding my arms, my body weight is just too much for my knees to handle. Imagine going somewhere if you can't straight and tell me how that feels.... And walking in braces, big bulky metal braces was jus painful. I've always had flat feet and as I walked about with two metal rods locked in my shoes I developed pretty severe blisters. Cremes, band aids nothing seemed to work. Locking the braces straight was a painful procedure too, as we had to fight my tensions that every year grew stronger. Drawing the step from the hipp to lift the leg wasn't easy, wasn't graceful. Took a lot of energy and because of how complicated balancing my body weight in something like this, wasn't a quick way to get around. Ten rounds around my apartment and I was done! Sometimes in order to make things more interesting we'd go outside, go on a mission. Like, get to a video rental store down the street. Suffice to say, I never made it. And then releasing the lock on the brace after I was done for the day. A great relief as my legs went numb.

 A year or two ago I had to go up a few steps to see my friend's artshow. Dragging my feet   I ruined my favorite shoes as my friends assisted me under my arm. I couldn't wait to get back in the chair. What can I say, walking just isn't my thing.


  1. Hi Ralph - thanks for posting this. It certainly reflects the opinion of many adults with cerebral palsy and other conditions like MS that I've worked with over the years. My questions... Are you glad that you tried walking so that you 'know' it's not for you or do you wish you'd been given the option of chair for mobility earlier. Also, are there benefits you experience now n terms of choice

  2. Sorry - posted early. ...choice to take a few steps if needed on occasion, or ability in your regular daily life ie transferring