Tuesday, May 03, 2011


On our trip down to New York City, we stopped to grab lunch at a Wegmans. We love their buffet and the chance to roll around and shop afterwards. There were a couple of things I wanted to pick up for the kids so I headed off on my own to look around for them. I was enjoying being out of the car and freely rolling myself down the long aisles. Just to stretch my arms and to feel movement is great after the confinement of the car. I like to find an empty aisle and 'run' down it. Getting the wheelchair going as fast as I can and then making a sharp turn at the end. It is just plain fun.

I pulled up short as a woman stepped into the aisle just before I got to the end. She smiled at me, sadly of course, and said, 'I was in a wheelchair once for a couple of weeks ...' pause, 'I just feel so sorry for you.' I didn't want to get into a discussion, I just said as pleasantly as I could, 'Well, it's fine for me.'

What worries me is that people who've experienced temporary disability cannot understand, though they wouldn't understand this either, disability. And because they don't actually understand disability, while thinking they do, they misrepresent my experience and the experience of the majority of those of us with disabilities. Using a wheelchair for two weeks is just, well, using a wheelchair for two weeks. It bears little to no resemblance to being a wheelchair user. All you learn in two weeks is how inaccessible the world is. Good, I suppose. But wheelchair use is about way more than dealing with barriers. It's way more than dealing with stares and prejudice and dumb questions. It's also about living a full and good life on wheels.

When I first got into a wheelchair, I admit to the typical frustrations. Frustrations that have not disappeared with time. Inaccessible buildings, stores with narrow aisles (or wide aisles blocked by displays), attitudes that exclude and, of course, the stares. But those things, which were the foreground of my experience when I began using the wheelchair have very much become like background noise. A constant low buzz of annoyance that only comes into sharp focus from time to time.

My experience of the wheelchair, six months in, was very different than my experience six days in. Within that time, knowing I was staying in not getting out, I adapted. I don't believe that those who are getting in knowing they are getting out ever bother to do the cognitive work involved in adapting. I had to shift my world view, I had to examine how I really felt and distinguish it from what I thought I was supposed to feel and what I expected I would feel. That's work that's tough for anyone. But that examination led me to understand that my expectation of a life limited and a life proscribed wasn't my actual reality. My life had changed but, really, in ways that mattered less than I'd imagined. I got around differently, I wasn't different. That surprised me.

Those 'trainings' where they have someone spend an hour in a wheelchair do more harm than good. They solely instill fear, pity and gratitude (for non disabled status). You can't visit another's world and understand it. Being a 'tourist' in the world of disability simply gives you the odd sensation that every tourist has - gratitude to get back home. So putting on a blindfold for twenty minutes and attempting to make tea may 'titilate' but it doesn't educate. Same with putting cotton batten in one's ears and trying to hear a conversation. These exercises, and those that do them, don't understand the insulting nature of what they are doing. Suggesting putting on 'black face' to experience racism would be met, appropriately, with derision. But getting in a wheelchair for a couple of hours is met with 'wow, what a good idea'. No, actually, its not.

My surprise at discovering 'life' in a wheelchair would surprise her too. The woman shopping who thought she understood disability because of experiencing two weeks in a wheelchair. She learned that the world could be a frustrating and inaccessible place. She didn't learn, and this is surprising to most, that those frustrations and that inaccessibility don't define the life of a person with a disability. They are 'constants' ... true. But there are other constants ... and though it's tempting to list them here - I'm guessing that they are different for each and every person with a disability. But one constant, that I expect is universal, is the ability to experience joy. A wheelchair doesn't preclude joy, happiness or even ecstasy.

And some of the joys are simple.

Like rolling quickly down and aisle in Wegmans.


Anonymous said...

Dear Dave,

I love this post.

I was born with my heart condition. I was always different. And some of the thoughts (well I guess all of my thoughts since I am me :-)) are different from the experience and thoughts of my peers...

But I am still a human being with phantasy, values, love and joy.

Or as one of my dreams stated: two arms, two legs, breathing air = planet earth, make the best of it.

Joy from Germany

kitten said...

dave, for a while i had to use the wheelchair for shopping trips. it was just too uncomfortable/painful *not* to. and i get what you mean about "visiting" too.

but that chair gave me freedom, as you said. and it gave me some beautiful memories of late night store visits with my husband, who fully believed that pushing me as fast as he could then stepping up on the wheelie bars to ride was a Very Fun Thing. its still good memories with him although we are no longer together.

it was freedom and not oppression, i definitely agree with you.

the only real issue i had was reaching things on shelves, but i'm 5'1". i have those issues *anyway*

blessings today!

Anonymous said...

Well said! I teach and I have always had trouble expressing my ojections to mock training sessions.

In a pinch, those sessions have been incredibly useful in terms of getting engineers to understand differences in slope, bumps, protrusions etc. But I try to be very, very clear that they are experiencing (badly) an encounter with assistive technology - not with any disability. Now I can tell them just how inappropriate it is to claim any understanding of someone else's life. The analogy to "black face" is powerful and completely correct.

I will be even more reluctant to use that technique in the future. I know from my own experience that noone can fully "get" what my body feels like and how it moves (or doesn't) and I will be far more vigiliant about how I train "professionals" in the future.

Thank you - Gina

mp said...

Thanks Dave. I'm a recreation therapy student and we do exercises like spend a couple hours in a wheelchair trying to get from one end of campus to the other. I always thought they were kind of pointless. I mean, if there were a fire, I'd be the first person standing up and sprinting away. I don't feel like I could ever possibly understand what it's like to use a wheelchair every day, but I get much more out of talking to people with different experiences than my own than from trying to replicate someone else's experience.

Kristin said...

I love this post.

Eliza said...


I appreciate and understand what you are saying, but i would also like to say that those "trainings" can be useful at certain times.
My daughter is blind and I was becoming increasingly frustrated trying to teach her. My father suggested that i try being blind and the insight that blindfold and that hour provided has been invaluable.

that said i will never ever claim that i know what its like to be blind or disabled. like you said, you cant just visit and then come away with absolute knowledge. No one that visits france learns french in the week that they are they. But hopefully they gain some appreciation and insight. Its all about the mind set i think.

Love all your articles by the way. :)

Kristine said...

When I was in college, I used to get so annoyed at the campus' "disability awareness week." I don't remember what the activities were to simulate blindness, deafness, etc. But to experience a taste of life in a wheelchair, students were invited to play wheelchair basketball. Seriously?? My life in no way resembles wheelchair basketball! There has never even been a time in my life where I was nearly strong enough to play wheelchair basketball! If your awareness activity isn't even manageable by the people you're supposed to be promoting awareness about, something is VERY wrong!

Somewhere out there, I'm sure there's a wise quote about how it's more dangerous to have a little knowledge and THINK you understand, than to be ignorant. I really have a hard time with how many people speak authoritatively about disability, thinking themselves advocates, when their message doesn't even resemble what I'm trying to get across. (Was it on this blog that we had this discussion, when Sarah Palin first took the limelight?)

Hannah Ensor said...

YAY! Another 'shopping mall speeder' :D

Really well put. Thank you!

Ettina said...

More and more, I'm realizing that I had a very unusual reaction to the disability simulations my school did. I don't know if it was a subconscious awareness of being different, but somehow I immediately got that these things would be easier with practice. For months, I spent hours of spare time wandering around with my eyes closed learning how to navigate blind, and played with the crutches my parents had from when one of them broke a foot.

One thing that might be cool is if they had actual disabled people show how they're much better at some things that the non-disabled people find hard - eg a wheelchair obstacle course, blind obstacle course, toe-painting contest, etc. That way, they get the idea that those simulations don't show you what it's like to live long-term with a disability.