transabled.org

I remember John Hockenberry described Stephen Hawking as a man so brilliant he didn’t have the time or inclination to talk to most people he’d meet on the street/at talks let alone another disabled person.

It’s amazing you got to meet him and it paints him in a totally different light compared to Moving Violations.

I think many who are using wheelchairs today would have been compelled to walk with crutches and braces in the old days. I especially recall a kid in my high school who dragged himself around in hkafos on seriously stunted legs at an incredibly slow pace. Born 40 years too soon.

@Sophie: John Hockenberry has a point. I suspect the only reason Stephen Hawking deigned to talk with me is that I could hold my own in passionate discussions about cosmology and quantum mechanics. That was all we ever talked about. I intuited that he hadn’t the slightest interest in talking about disability, so such subjects never came up.

Anybody care to explain why the ratio of wheelchairs to leg braces has changed over the years, if indeed that is the case?

Using braces is a slow, difficult, often painful way to get around. It barely mimicks walking, yet isn’t walking. For AB’s, though, it seems that using braces gets you “on your feet” and is therefore less of a disability. Braces are often perceived as less visible than a wheelchair. Over the years, the perception of disability *has* changed, particularly on the part of people with disabilities themselves. “Fuck passing as less disabled, let’s be more comfortable and more effective”. Hence, less braces and more chairs. This is just a wild hypothesis based on unfounded thoughts and mere observations. :)

Also, that wheelchairs and accommodations for them have improved dramatically in the last 40 years or so. When I was growing up a person who had to use a wheelchair was essentially housebound and was a great bother if s/he had to be taken out somewhere.
In that era, however, I do recall many who used crutches and braces with remarkable agility and stamina. Leonard Kriegel’s book Flying Solo gives a lot of experience-based insight into the question of ambulating vs wheeling:
http://www.amazon.com/Flying-Solo-Reimagining-Manhood-Courage/dp/0807072311

I think Sean is right. Those who are willing to go for more comfort and speed, will use a wheelchair (unless they are very strong one leg amputees, who can go really fast on crutches). Those who care about their image more might stick with crutches. Crutches are also often perceives as a temporary thing, thus keeping the person in AB category while wheelchair puts you in PWD category right away as there is an issue of inaccessibility that crutches users don’t face – like stairs and curbs.
My friend was showing me his new TiLite wheelchair today. Beautiful Spinergy wheels with natural fit handrims, I was jealous. :-)

Sean, I think you nailed it.

Also…would add a wild hypothesis or two of my own:

1. Wheelchair access. Simply
not as universal 40 to 50 years ago. Deal with steps,
curbs, uneven ground, narrow doors or one just didn’t go out & around. Those barriers were at least negotiated with difficulty in braces; impossible in the ugly, heavy ‘hospital type’ chairs of the era.

2. Braces, in large part, were associated with polio.
Polio, unlike SCI, left sensory nerves intact so there was feeling in the legs.
Feedback gave input as to where one’s legs were. Some with polio did retain a
limited muscle function, tho weak. This made bracing, even with some style and fluid motion, possible after a lot of exercise, therapy and
practice and with well fitted braces. Now, polio is nearly non-existant in terms of new cases. And, those with polio have often been faced with ‘post polio’ syndrome and going back to braces is way too hard when dealing with overall body weakness, advancing age, pain, etc. Thus, even those with polio who did well with braces for many years opt for the now relative ease of wheelchair use. And with the addition of access, wheelchair acceptance, accommodation, and the new lightweight chair technologies, wheeling is just a no brainer, full stop.

Hey, I’m just a ‘garden variety’ devoteee, but I’ve been around long enough to see and realize those changes
and the reasons for them. Cannot argue the logic at all.

Keep on bracing, Chloe. We devos kinda like it and it brings back memories…good ones.

/Art

Good points all. My impression is that leg braces, as opposed to crutches, definitely put you in the PWD category though.

There are still plenty of places that are not wheelchair accessible; a couple of my favorite restaurants, plus a large majority of my friends’ houses. In such cases I am very glad to avail myself of the possibility of KAFOs and crutches.

A friend of mine wears KAFOs all the time regardless of whether she is or is not in a wheelchair. It keeps one’s options open. This seems very sensible, and I’m not sure why one doesn’t see this more often.

There’s also the issue of pressure sores. Paras etc sitting with leg braces on would probably make them worry the braces were increasing their chances of having pressure sores.

@Art: Sorry, we were writing at the same time so I wasn’t including you in my previous comment. That is an excellent point about the difference in sensory loss between polio and SCI. Three out of my four friends who use leg braces are polio survivors. The sensory loss in my left leg is limited to above the knee, so I’m well aware of my feet touching the ground. This surely must make using the braces easier. On the other hand I have the impression that a relatively high proportion of people with spina bifida use leg braces. Doesn’t that usually involve sensory loss?

@Sophie: My wheelchair is configured such that the lower thigh straps are not taking any weight. There is a lot of sensory loss in my left thigh, and so it has crossed my mind about pressure sores there, since sitting in the wheelchair with left KAFO is pretty much daily routine. Not infrequently I’ll check my thigh just before going to bed after I take off my KAFO. There has never been any sign of skin breakdown. Also there has never been any discomfort from wearing my right KAFO, where I have full sensation. I’m thinking that if the braces are properly fitted it shouldn’t be a problem.

For a look at wheelchair development from the 40s to the 90s:
http://www.facebook.com/profile.php?id=715110226#!/photo.php?pid=1807701&id=20856528051&fbid=79757933051

Sorry that link will not work automatically, try to cut and paste in.

Brice & others: for posting
a lengthy URL that often gets truncated and wont’t work:

Try http://www.tinyurl.com
which will convert it to a
shorter version, easily fitting a small box and one line.

/Art

Amazing how chairs remained more or less the same until the 80s when suddenly BOOM

I think it had a lot to do with the great increase in those who were surviving SCI and spina bifida, who created a market for something better.

What’s the difference between power chair and electric chair?
Electric chair is for murderers. Power chair gives you power to go on. (From my advocacy class)

Interesting point, Gordo, about power vs. manual chair. I wonder, could it be because people ask manual chair users more if they need help so we are often more on guard and want to show off our abilities and strength? I really don’t know. In the USA, power wheelchairs are much more common than manual ones, people are used to them – go to a big store and somebody is always on those store scooters. They don’t really get stares. So perhaps power w/c users are more comfortable with others?

Those of you who had a comparison, is Canada or USA more wheelchair accessible and how about the social barriers? USA has a very little awareness of disability etiquette but accessibility is OK though far from perfect.

Just look at how bicycles have changed their looks and functions. New materials, new forms, new kinds (mountain bikes for example).

And the attitude towards disabilities and people with disabilities has changed a lot.

People are in general more active. Look how much sportswear and sportsgear is sold. People wear sports clothings all the time.

I guess this explains more of the innovations than whether it was polio, SCI, amputations or whatever. But who knows?

The guys at Marvel complain nearly none of the technology from the bike world have filtered down to the wheelchair world and a lot of the problems we have with things like suspension have already been fixed in the bike world.

New Zealand struggles with the fact that a lot of our buildings are heritage buildings, especially in places like Wellington which is built so densely things get tricky. Most councils are struggling to pay to earthquake proof a lot of those buildings and can’t afford to make them accessible. Accessibility when people are actually thinking about it tends to be pretty good here but from what I’ve noticed most people don’t try. An example is the local cinima where I live, only one of the movie theatres can be accessed from a wheelchair and there’s no wheelchair bays to sit in.

Thanks, Gordo.
You are so right about the mistakes in the USA. I need to talk to an owner of one restaurant. They have bathrooms with grab bars and all but the doors open in such a way that one can’t close them from a wheelchair, not enough space.

Even though USA has the ADA, the building codes are not enforced. One has to get the service but not necessarily the access into the building that provides the service. I think Sean could tell stories about the ADA and the building codes.

In browsing back here I thought I would add a little observation on leg braces and pressure sores.

Some months ago I noticed a small purplish red patch on my upper inner left thigh, in a spot that contacts my leg brace. It happened to be in a place where I have zero sensation. I don’t know that it was the beginnings of a pressure sore, but it didn’t look like a bruise. I’m not sure how I could get a bruise there anyway. There was no skin breakdown but it took several weeks to go away. I watched it carefully after I had noticed it, and spent a greater proportion of my time at home without using a leg brace. Perhaps I am overreacting? Or perhaps I should be a little more vigilant over areas where I have no sensation?

Chloe, as someone with relevant medical training I think that what you describe certainly sounds like an early stage pressure sore. You did exactly the right thing by reducing how much you wore the brace and keeping a close eye on it.

Please do keep a careful watch on all skin that you can’t feel as you really don’t want to get a full blown pressure sore. As you experienced, they take ages to heal and it’s a lot worse if the skin actually breaks down!

I appreciate your feedback on that, Beth.