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Saturday, March 24, 2012

Disability and the Cultural Perception of Technology

Wheelchairs are n0t cool. Wheelchair use carries no social prestige. Wheelchairs are firmly associated with old age, paralysis and disability. I suspect people with no experience with disability think of two polar opposites in regard to wheelchair use. An elderly and frail person or a young paralyzed male in a sporty wheelchair. These are two stereotypes on opposite sides of the spectrum that are created with no foundation in fact. No thought, none, is given to the technology involved in making a rugged dependable wheelchair. No one that sees me thinks wow, that is one well designed wheelchair. I find this remarkable in that I have witnessed extended discussion about bikes, skis, cars, and electronics of every type. Not once has a person ever engaged me in a discussion of wheelchair design. I find this odd. Since the first rigid frame wheelchairs were invented in the 1980s wheelchair technology has borrowed liberally from the motorcycle and bicycle design. Wheelchairs, bikes and motorcycles have much in common. Spokes, wheels, brakes, tires, powder coated parts, gripping mechanisms to mention but a few obvious shared components. In spite of the similarity wheelchair use continues to carry significant social stigma. Nothing positive is associated with wheelchair use. One simply does not associate wheelchair use with fitness, mobility, and ability.

My views about wheelchair use are radically different. I love my wheelchair. Really, I do. I have not named my wheelchair as some paralyzed people do. Simi Linton, a noted disability studies scholar, for instance refers to her cherry red wheelchair as Rufus. When I see a person using a wheelchair go by my eyes go immediately from their face to their wheelchair frame. I want to to see dirt. I want to see scratches, slightly bent spokes, worn tires, and faded upholstery. I want to see signs of hard use. Spotless wheelchairs worry me. Does this person in a spotlessly clean wheelchair ever go outside? I also look at the wheelchair frame and fit. An active paralyzed person sits upright and is correctly seated. I then look at the wheels--very small front wheels are most common. I hate these small wheels. I know they are practical in an urban environment. Next, I look at the rear wheels and rims. No matter how well rear wheel rims are powder coated they take a beating. Well worn rims are a sign of hard use. Like bike wheels, rear wheels on a manual wheelchair have been revolutionized by technology. Good rear wheels stick out like a sore thumb. In short when I see a wheelchair I think action. I think work. I think does that wheelchair empower the person using it. All this goes through my mind in a flash.

Wheelchair technology has in my estimation stalled and has been stalled for more than a decade. Wheelchair design was revolutionized in the 1980s. For the first time since the 1930s wheelchair design advanced by leaps and bounds for a brief period of time. Many new companies were formed and much to my delight Everest and Jennings went out of business. Somewhere along the line wheelchair manufacturing became a big business. The innovative small companies that popped up in the early 1980s were bought out by large corporations or simply put out of business. Fewer and fewer companies manufacture wheelchairs. Giant companies such as Quickie have a monopoly on the market. Very few people like me exist in that I opted out long ago. I refuse to deal with any wheelchair company. I farm out any work my wheelchair needs to local small businesses. They treat me with respect and are happy to have my business. Not only have I saved a small fortune but the people that work on my wheelchair think it is cool. They get the technology. They get why my wheelchair cannot break. They get why all parts are internal. Every single nut or bolt has a reason to be on my wheelchair. The welds on the frame are elegant. The sealed hubs are top of the line. My wheelchair is simple in the extreme. I love how it looks--dirt and all.

The lack of respect wheelchair use and technology receives makes me crazy. Why can others not see what I see? I see a wheelchair and think there goes a person that has adapted. I think we people that use wheelchairs are a testament to the way we humans have adapted since we have been bipedal. I find such individuals endlessly fascinating. I also wonder when if ever we will be respected? I doubt that will happen in my life time but one never knows. And when discouraged I think of how we Americans love technology. Maybe, just maybe, some day people will see what I see. This is already taking place in the prosthetic industry. People like Hugh Herr and Aimee Mullins are constantly in the news. I read about how we are on the cusp of creating artificial limbs that are without question superior to our biological limbs. This amazes me. Yes, the technology is cutting edge but it is the social response that has amazed me. When kids and adults see prostheses they do not think tragedy or disability they think cool. People that know nothing about disability are drawn to prostheses. I just read an article at that waxed poetic about protheses. Scott Summit who designs coverings for prosthetic limbs wrote:

"I feel that any product that is medical or corrective becomes a necessary augment to the body, and therefore, should live up to that role. It should respect the user, and offer to them all the quality of living and self esteem that it is able. Its success should be measured in terms beyond merely the pragmatic, but should aim to enhance the user’s quality of living in every way possible."

I hope I live to see the day when someone comes up to me and asks me a question no one ever has: How does your wheelchair enhance your quality of life? For that is exactly what it has done--at minimum. My wheelchair makes my life go. No wheelchair, no life. Crawling simply does not work. My wheelchair is a great gift, truly empowering technology. I cannot imagine life without it nor do I want to.


Catherine said...

I'd love to see a wheelchair built that is more streamlined and higher up so that the person is at face level with most of us. Having to always look down at a wheelchair owner's face is not a good thing.

Unknown said...

For a different aspect, I have the hardest time explaining to parents why their young child who is non ambulatory should be in a wheelchair and no longer in a stroller. For one thing, when other children see a small child in a stroller they automatically think "baby", even if the child is 5 or 10 years old. For another, keeping a child from being able to explore their environment with a pair of wheels they can control totally stunts their developmental growth. I know many parents think, if he/she gets a wheelchair, I have given up on him walking. If a child is going to walk, he is going to walk, but they need to be able to explore their environment just like any other child.

Elizabeth said...

So interesting. I was going to send you a link to a robotics company that has put out a video of what looks to be a really cool wheelchair adaptation for paraplegics. I was wondering what you thought of it. I'm putting it up on my blog later this afternoon, too, but here's the link:

Phil Dzialo said...

I am somewhat confused and simultaneously fascinated by the need to have a person at face level, or even the use of a "big stroller" for an adult. My son was a near drown (25 minutes under water) and his basal ganglia were fried...14 years ago. All I want is that he be comfortable in the chair for more than 2 hours...and we have the most high tech of chairs ( a chunc). I don't want a modified segway which he couldn't use anyway, and don't care if he's eye level with people who could give a shit. I don't care if it looks like a baby stroller or a gurney...I want him comfortable so we can take him where he needs to go and places he would enjoy. High tech does not give me any of that...

Katja said...

People comment on the technology and engineering of my wheelchair (ultralightweight titanium rigid chair) all the time!

Maybe it helps that I work for an engineering company.

A Caine said...

Think about it from a perspective of someone who just consumes mass media. A replacement limb has the potential to be an upgrade. Super strength, the ability to shoot lasers out of your finger tips, some kind of on board computer. People see a replacement limb and start thinking about science fiction cyborgs and the various things they gained with the mechanical attachment. So likely in their mind they see a potential gain out of having a limb once the technology advances. The other key point is that you don't need a lot of replacement limbs just going around town.

Whereas everyone sees wheelchairs much more frequently. You see the guy loading himself in the van with the special ramp, you see them pushing buttons to open doors, etc. To people a wheelchair is one of those vans with the lift, having to build a ramp on their porch to get into their house.

Simply, you go to the movie theater, see some cool movie with augmented space marines, walk out into the parking lot and see someone having to load their wheelchair into their vehicle. I'd say it is fairly easy to see why one is seen as all exciting, futuristic, etc and one is old hat.

A Caine said...
This comment has been removed by the author.
william Peace said...

Catherine, I suspect the point you are trying to make r.e. the height of a wheelchair is that social conversation takes place about two feet above the head of a person using a wheelchair. This is inherently problematic.
Lisa, No stigma is associated with a stroller. Significant stigma is associated with wheelchair use. I can readily understand why parents would have a hard time ordering a first wheelchair. However, I would assume once a parent sees how their child is empowered by a wheelchair that resistance will disappear instantly.
Elizabeth, Thanks for the link. The design is a hybrid between a standing wheelchair and exoskeleton. I see no practical use whatsoever. I would lump this is in with other expensive and useless inventions created by people that know little or nothing about disability. More to the point, who could afford such a device? Insurance covers precious little in terms of wheelchairs and other adaptive devices that are desperately needed. When every person with a disability has a well fitting appropriate wheelchair then I will look toward high tech gear.
Phil, See my above reply to Catherine. As for the wheelchair your son uses I must confess I never heard of chunc wheelchairs. I went to the website and was decidedly unimpressed. I will confess I have found UK based wheelchair companies produce inferior products. I sure might be wrong as I do not keep up with any European based companies. I have yet to see any company produce a good looking and well functioning wheelchair for people like your son.
Kayja, I strongly suggest your place of employment is a major variable r.e the comments you get. Engineers love design. I always have people say something when I am in a bike shop about my rear wheel hubs. They were made by Phil Woods who no longer makes hubs as far I am aware. His hubs are outstanding. Bought a life time supply 15 years ago!
ACanine, You make a number of excellent points r.e prostheses. I would only take exception to your comment regarding how common it is to see people that use a wheelchair. I suppose our presence is common in some areas of the country--I often see many wheelchair users in Baltimore. No idea why. But in my area in the last 20 years I have seen one other wheelchair user.

Liz said...

I actually have people talk to me all the time about my chair's design and how light it is and how cool and rugged and sporty... Cab drivers are amazed by how it comes apart with quick release... bike people recognize the carbon fiber wheel rims/spokes... Little kids are completely fascinated. I regularly get up or sit in a different chair to invite people to try out my manual wheelchair, an option not gonna work for everyone obviously but since I can do it I like to let people take my wheels for a spin. I then tell people (total strangers... really all the time...) that they need to keep this in mind in case they or someone they know need a chair, it REALLY matters to get a good one... Bike people (there are so many in San Francisco) always want to talk about the chair design. And people at tech conferences.

I have sparkly (tiny) front wheels which helps with the cool factor.

But you are right about Most People and The Culture In General. It is not something reflected at all in cultural works like movies or tv for example.

I also look over people's chairs and admire their ruggedness and signs of hard use.... which mean usefulness and that they are well loved!

The chair isn't very different from the awesome Quickie II I had in 1994 or so. I also have been wondering about the stalled out design. While there are lots of interesting *designs* they aren't being manufactured. And the designs as you note don't seem focused on the durability and *fixability* that we need.

Thank you again for another fabulous and right-on post.

Liz said...

Also to Lisa in comments above, I agree and feel very happy whenever I see a little kid in a wheelchair and am grateful their parents didn't have that attitude that their kid will walk or nothing. The very few times I have seen a preschooler in an appropriate sized chair they could control themselves it was a joyous thing.

Liz said...

What I'd really like is a giant padded Sand Flea...

YEAH!!!!!!! Now that would be cool.

william Peace said...

Liz, I wonder if there is a East Coast West Coast difference. I was also taken aback by your comment about taxi drivers. In NYC getting a taxi is virtually impossible for a person that uses a wheelchair. In fact last time I took a taxi a friend hailed the cab while i hid behind a parked SUV. When I came forward the taxi sped off yelling no wheelchairs. Another time the taxi driver wanted $10 extra to take the wheelchair stating it was too much labor. So no positive comments of any sort here in the NYC area. As always thanks for the comment. Next time I am on the West Coast would love to meet you.

dose said...

I, for one, do see wheelchairs and think about the design elements.

Erica said...

Well, Liz, you and I are definitely on a different page. I do not accept strangers asking me anything about my disability, including commenting on my wheelchair. That would be like me commenting on someone's legs. "Hey those are really muscular calves you have. You must get around well with legs like that." Ridiculous. And to let strangers try out your chair...that's just weird (and unsanitary) and one of those things I wish the disabled wouldn't do to encourage strangers to butt in and ask inappropriate questions of us. And I do not tolerate the fascination of little kids. Their parents need to teach them not to gawk at people in wheelchairs, not to be fascinated by them. Don't entertain your kids at the expense of my dignity. Do you get these strangers who try out your chair to take off their running shoes so you can try them out? To each his own, I guess.

Now if it was my physiotherapist or homecare worker or someone who actually knows me, I wouldn't mind talking about my chair and I do quite a bit to familiar people but NEVER to strangers. It's none of their business, geez.

As for the appearance of wheelchairs, they are not helping the perception the general population has of the disabled. I catch my reflection and am shocked. I look like a freak. No wonder people stare at me. It's hideous. All you see are these two big wheels coming at you. It's weird enough to have someone in a seated position wheeling about among people who are standing and walking. Someone has to come up with something better than this. The wheelchair needs to be reinvented. Completely.

Innovation has stalled most likely because we make up such a small percentage of the population, there isn't enough of a market for wheelchairs and therefore, no profit in it.

Even if there was some fantastic "assistive device" that helped me blend in more and was more effective, I couldn't afford it. As a recipient of disability from the Nova Scotia Department of Community Services, I had to fight to get them to pay for half of the cost of a second hand "standard" clunker of a chair. I'm lucky to have it, institutional as it is.

As for the height you are sitting at...the better solution would be for more accessibility for those in wheelchairs. It is extremely humiliating when I go up to a counter that is above the level of my head and someone has to lean over it to talk to me. I can't reach debit pads at check-outs, either, which results in a scene of the cashier trying to pry it off the stand to hand it down to me.

Erica said...

I know my comment is going a little off topic but I thought of something with regards to people trying out someone's wheelchair. Years ago, about ten years before I ended up in a wheelchair, I had a friend who was in a wheelchair. We talked about problems she had with it and how she needed a better one, etc. I tried it out, wheeled around her apartment for a while to see what it was like to maneuver. When I first started using a wheelchair myself, that short time of being in a wheelchair ten years earlier made no difference. It didn't prepare me for anything.

If able-bodied people are to be prepared for the possibility of someday ending up in a wheelchair, they should rent a wheelchair for at least two weeks and never, not once, cheat by getting out of it when they find themselves in a bind when out in public. This, not a few minutes of taking it for a spin, will teach them something.

The technicalities of riding in a wheelchair are not difficult, it's the sudden shock of finding out that as soon as you are in a wheelchair, you are no longer a person, you have been unceremoniously stripped of your status as a human being.

william Peace said...

Erica, Thanks for the comment. I would disagree with only one point--that would be kids. Kids are not bigots, that behavior is learned. Kids are just not exposed to disability and are simply curious. Schools and parents do a uniformly poor job educating people about disability. I am happy to take up the mantle of education. I know I can do a better job. Adults are a different story. I am who I am, if that freaks people out it is their problem not mine.

Erica said...

Don't misunderstand. I'm not attacking kids. It's the parents who don't teach them manners. I guess along with the birds and the bees, and what to do if someone touches you "there", parents need to have a "what to do when you see a person in a wheelchair" talk with their kids.

When kids stare at me, I'm never thinking hostile thoughts about them. Of course not! I know they are curious. But I'm not talking about five or six year olds. I'm talking about ten and up and teens. They are way past needing parents to tell them not to gawk at someone in a wheelchair. They should know better themselves by that age. And if they don't, it's because when they were younger, their parents didn't teach them any manners.

It's not polite to stare, period. Whether they are staring at a goth chick with a green Mohawk or me in my wheelchair, they should be taught not to do it.

And these eleven and twelve year olds don't just stare, they look you up and down, look at your legs, look at the wheels. And they follow you with their eyes the whole time you are in their field of vision until they can no longer see you. They give themselves whiplash doing it. I was wheeling down a sidewalk and a group of kids was in front of me. One of them caught sight of me and proceeded to walk backwards so he could continuously stare at me. After a few minutes I said, "Could you please stop staring at me." And he turned around.

The age of the child makes all the difference in my upset over their behaviour. Yeah, this is way off topic. Sorry!