Saturday, January 16, 2016


Image Description: A pathway through a park with a wheelchair being pushed along it. Only the hand pushing and the wheels are pictured.
There were three of us on the bus.

All of us were in manual wheelchairs.

Two, picked up at different spots and meeting for the first time, were both going for physiotherapy at a local hospital, and me going to work. We briefly introduced ourselves. I learned that both of the others, a man and a woman, had been seriously hurt at work and both had feared that they'd never walk again and now were well underway with physio. They learned that I had a permanent disability and was on my way to work - two facts that they had a little difficulty putting together in their minds.

They then fell into conversation with each other. They briefly touched on the fears they had that the disabilities they were experiencing would be life long but then moved on to talking about their experiences in the wheelchair. What they talked about would surprise no one in the community of wheelchair users. They talked about barriers. They talked about inaccessibility. They talked about doorways and bathrooms and curbs. They talked about attitudes, without understanding that the social aspects of disability were also an accessibility issue.

Frustration and anger were expressed at how they were isolated and ignored while being in the chair, they were angered that people thought of them as disabled while in fact they were just using the chair and would be returning to the world of the walking. They were being mistaken for actual disabled people - they said this, I think forgetting that I was on the bus. They saw the barriers and the social treatment as a natural consequence of disability and they attributed to disability everything they experienced. They didn't see is as bigotry in action or bias in construction, they saw it as 'this is how it is' and they wanted escape from that at any cost. And walking was the cost.

I remember many years ago going to see a movie with a plot line about a lesbian woman, Desert Hearts. I have always remembered a conversation in that film, when the protagonist was fighting with another character who was 'flirting' with or 'play at' being a lesbian:

Cay: Listen, you're just visiting the way I live. I guess it would suit you find to hide in that hotel room until your train leaves.

Vivian: Oh, then let's hire a float. You are so insistent on making everyone think the way you do

Cay: Oh, yeah. You're making real headway in that department!

Vivian: No fear, no confusion, so self-assured.

Cay:I don't act that way to change the world. I act that way so that the goddamn world won't change me!

I really liked the whole conversation so I've put it here, but it's the line "Listen, you're just visiting the way I live." It really struck me then and I knew it would real meaning for me later in my life, and it did. Because that's exactly what I felt when I listened to this conversation.

I tried, several times, to enter the conversation to bring a real disability perspective to what they had to say but my attempts were rebuffed, they were not interested in a disability perspective - they wanted to share their experience with each other, as valued people who were temporarily experiencing being devalued. So I gave up and simply listened at the periphery of their conversation at the margin of their attention - as they did to me what the were furious at what others did to them. The irony of this lost in the passion of their discussion with each other.

This confirmed in my mind the danger of those 'let's experience disability by riding around in a chair for an hour' exercises. They don't get disability they get the frustrations and imagine the horrors of a lifetime of living with barriers and they long for the end of the hour when they can get out of the chair. It's the fact that they can get out of the chair that disallows them the necessity of thinking like an actual person with a disability who sees barriers in a very different way than the 'tourists' who throw their hands up in resignation, or who accept the social exclusion and the invisibility that comes with being highly visible as simply a natural result of lower social status. They get out of the chair thinking that life as a disabled person is what they experienced - and pity is reinforced as the right response, and death is seen as the preferred option.

Disability isn't a tourist destination, it's a permanent move. And everyone knows that it's different to visit New York City than it is to live there. The same is true of how I live as a disabled person. My life experiences the same barriers as those two on the bus but my experience of those barriers is vastly different than theirs. I know how to deal with them. I have strategies to live and be joyful as a disabled person. They did not. Their strategy was simply to bemoan their fate and endure until they stand up and walk away from their experience.

I don't walk away from disability.

I live with it, mostly the same way everyone lives with everything, in my own way and experiencing love and pain and the whole damn thing.

They got off the bus before I did, as they did one of them said that they wished that I was getting off too and that I had walking in my future. I simply said, "Why on earth would I want that? I'm on my way from home where I'm loved to work where I'm valued. I have no need of this 'walking' you speak about." I laughed as I said this but all I received was four eyes locked on me in an incredulous stare.


Colleen said...

Dave, I love your response!
The prejudice runs deep and often people are not conscious of their prejudices.

Alicia Butcher Ehrhardt said...

The problem is that a quick 'vacation' to the land of disability only shows people they don't want to live there.

They don't get that we were not asked if we wanted to live there!

I get similar all the time when someone who has a cold or something minor tells me how exhausted she is. I live with excruciating fatigue ALL the time, and I'm supposed to feel sympathy for HER.

She never says, "I understand how life is for you a little bit better now that I've been extra tired for a week." And she is a family member who's been aware in some way of my disability the whole time I've been this way.

NO empathy. The fear of disability is so large, they can't take on a little bit of it.

Well, you know, I'm afraid of it, too - and I don't get a choice.

The worst part? I was probably just like her, you know, BEFORE...


Great answer - even though you and I BOTH know that if magic wands were possible and we could suddenly be made 'normal,' we'd take it. If there were no cost. Even though we know there would be a whole lot of adjusting to do.

Lawrence Waller said...

At 68 years old I had a spinal correction operation in June, was told if I did not have it I would end up in a wheelchair, came round from the operation paralysed from waist down what the consultants refer to as T10 T12 COMPLETE. I have to admit that during my hospital rehabilitation I was jealous of those with a very similar injury but not COMPLETE because they would/were learning to walk again. I guess I have to stop feeling sorry for myself and like you just get on with life because after all life itself is the best gift anyone can have.
Lawrence Waller UK

B said...

Good one, Dave. Kind of sad those two passengers haven't gotten more from their 'visit'. When accessible public transportation started and I registered, my mum once said words to the effect "... of course, you're not like those people...". It was said mildly. She prepared me to recognize being treated as different is considered a fairly normal thing by normal people. I've been fortunate because I have a kind of dual citizenship in both places 'normal land' and the 'disabled land'.

AnyBeth said...

Idk. I can accept the ever-so-broad umbrella of disability to encompass both temporary and permanent disability. True, those two were certainly taking the wrong tack and so were likely making their lives and those of others more difficult than necessary, but there does exist the occasional permanently disabled person who consistently revels in self-pity. And I'm told the mourning of ability lost and world changed is very common, but those of us with gained or increased permanent disability have the time to get past that.

And some people with temporary disabilities take them better than others. When my mother broke her foot, she ended up renting a manual chair, it being safer for her than the other offered devices. I showed her a few basic tricks: tight turning and how to get over their high threshold. Couple days and off she went, no longer in the "poor pitiful me" that sudden isolation had brought. By the end of her time in a wheelchair, her only complaints were ones of society's design. Hers in order:
1) It's ridiculous that standard doorways for home bathrooms and closets are slightly too small for standard wheelchairs.
2) Waaaay too many places have "just one step". (Makes it harder for strollers, package carts, and dollies, too, so it's ridiculous when the builders already did landscaping so flooding's not an issue.)
3) Lots of things are too high up for no good reason and more things at stores keep moving this way.
It's all true, but I found it hard to keep my composure as she complained to me about these things, as I'd been using a wheelchair at times for years by that point, and it wasn't as if I'd never mentioned them. But it's good that her response wasn't "I'm glad I'll be out of this wheelchair soon" but rather, "They should change those things."

Myself, before hitting on a good treatment, my particular experience of MS was like rolling a loaded dice. Some days would be almost symptomless (though I'd generally pay for over-exertion the next day). Might even have a long stretch of such days. But since the big stuff at diagnosis, I quickly considered myself disabled, if only because I knew that even at good times, the odds were against me, so all "plans" are extremely contingent on my state that day. And that state wasn't the least bit predictable, as in, there wasn't even a list of possibilities, being that my most prominent symptoms were rarer ones that didn't make many lists. Idk, maybe I considered myself disabled partially because I knew that, for me, extended nearly symptom-free times were the aberration, not the norm.

I think whether or not one wants to (re)gain function is an interesting question. All my symptoms, it depends. Through treatment, I was more than happy to leave the great uncertainty behind, to all but eliminate the nerve pain and life-endangering parasomnia, and to somewhat reduce fatigue. I'd be more than happy for those and all the brainstem trouble to disappear -- ooo, and the occasional abulia, because being unable to make decisions affects everything. Other things, *shrug*. It's not that I'd say no to good ambulation, but I'd much rather my cat allergy disappear (or lessen to the point drugs can nearly resolve it). Heck, I'd even have to think about whether I'd rather walk or be able to eat kiwi fruit again. In fact, there's now one (and only one) drug that's FDA-approved to treat an MS symptom. It improves walking speed by as much as 25%. I still wonder who, exactly, wants to take something to have a chance of walking just a little bit faster. Weird.

Anonymous said...

I've been following this blog long enough to have commented on this before, but as much as the "hour in the chair" exercises fall way short of actual experience, it does make a small impact. Maybe not in the "20's", where the world is there to be conquered, but it is there. It does open dialogue . It is not just a tour, hopefully it is an education. I wouldn't wish for it to be a destination for others. I personally am not comfortable with my disability, for all the negatives as listed in your post. We may not always understand, but we can empathize. Just as I may be fully aware of the limits of my mobility, but don't experience the limits of one operating a chair with my mouth as others do. I can still have some understanding. We hope people have a grasp without actually having the situation, like our doctors and surgeons. We want them to be educated, have understanding and empathy. I was in a wheelchair for a year as a youth. It impacted me for the rest of my life. I have advocated at every turn for accessibility. I have way more patience for others trying to negotiate or get to their "stuff" in or back of their chair. As my life has come full circle to where I am once again dependant on wheels, nothing has been forgotten. I think we must be careful not to color all those short time users with the same brush. I don't think any of us like to be lumped together.

Anonymous said...

Pulp, 'common people' track, a song about this kind of tourism.
In the middle of it, deadpan, 'no body likes a tourist'.
When I started work at a PD school I did a training where new staff took it in turns to sit in a manual wheelchair and push each other around the site and local streets. It was a fantastic was to learn some of the issues not only for pushing manual chairs but also when accompanying kids in power chairs- where's good to cross the road, thinking about pot holes and visibility as well as kerb cuts.
I don't think it helps understand the experience of people with disabilities in their entirity, especially perjorification and social issues. Tourists don't get it.

Heather Carley said...

How do wheelchair sports fit into this important conversation?