No worries, you didn't sound insensitive. It's far from the first time I've heard similar sentiments, so I actually find it a little fascinating at this stage of my life, that my life experiences are so foreign to the ablebodied world, and that most ablebodied people assume that people in wheelchairs are inherently "deprived." There is a trite-but-true expression in the disabled world, "My disability does not limit me, but others' *attitudes* sometimes do," and I've found that to be true in my life (and my sister's - she's also in a wheelchair. No, we're not twins/multiples, and yes, it's rare to have two biological, singleton siblings in one family with cerebral palsy!) I've certainly been excluded from various goings-on, but it was never because I couldn't MacGuyver a solution... always because ablebodied people assumed there was none and didn't bother to ask my opinion.
Disability is definitely its own culture. Deaf culture is even stronger than disabled culture, but that's because Deaf people have their own language, and culture is inherently influenced and strengthened by language. (That's why, in the above post, I sometimes referred to Deaf people, and sometimes to deaf people. To be Deaf is to know ASL/Deaf culture, even if you are hearing - as with the child of a Deaf adult - but to be deaf means you can't hear and are not culturally Deaf - i.e. you don't know the language/culture. A seemingly small, but vital semantic distinction to Deaf people. If you're interested, you can google "Deaf President Now" to understand a little more about such things.) Disabled culture isn't as strong or as unified as Deaf culture, which I joke is why the Disability Rights movement in the US has stalled... when we all get together to try to clarify what kinds of policies are important enough, it tends to devolve into an axe-grinding eating-our-young event!
I once sat on a committee wherein we were supposed to be drafting some basic language for new policies we would like to see... i.e. we weren't writing laws, just trying to boil things down into one cohesive statement from the group. Within 20 minutes, we had one blind guy who'd once nearly been hit by a car demanding that all cars should have beepers that would continuously sound in order to make street crossing safer for blind people... (cue the city-dwellers, including those who were blind, saying, "What?! Have you *been* to New York?! Do you understand how obnoxious and ultimately useless that would be?!")... once we finally got that guy to sit down, a guy in a chair went on a rant about how he'd ignored a sign that said a given bathroom was inaccessible and gotten stuck in the bathroom, and how due to this unpleasant experience, *all* bathrooms everywhere should always be accessible... (cue all the chair users going "Why? There was a sign, right? Your own fault then, genius.")
All of which left us exactly ten minutes to try to deal with the incredibly complex and problematic Community Care Act, which is what we were *supposed* to be drafting a statement about. (The Community Care Act is one of those pieces of legislation that sounds great but becomes more problematic the more you look at it. What it's *intended* to do is provide more opportunities for severely disabled people to get good medical support so that they can stay in their communities, rather than having to move to an expensive nursing home... which, besides being a bigger strain on both personal and government resources, isn't really the place for, say, a 20 year old kid who snapped his spine and needs part time temporary nursing care. The problem is, the original way it was written, it would have pushed people who *were* happy in an institutionalized group home type setting, and who had been in that kind of setting their entire lives, and were thus happy there and had good social networks etc, back into situations where the support wasn't as strong as they needed... which is what we were trying to address. In ten minutes. Because we like to make these things hard on ourselves!)
But, that said, we do have certain cultural things that unite us all, and probably the biggest one is sports. (The second biggest tends to be "how to mod your accessibility equipment so you don't look like you stole it from a hospital.") I have yet to meet a reasonably young disabled person who isn't heavily involved in one, the other, or both... and most long-time disabled people, too, regardless of age. As an illustration of this, I recently had to upgrade (or downgrade, depending on your point of view) to a power wheelchair, because my shoulders are too shot to push my manual for long distances. I build my own manual chairs (my father's a welder who worked for one of the big name sports chair companies, one of the ones whose work you see a lot of in Murderball... which is how I know those guys) so I hadn't had to go through an "Accessibility Tech Specialist" in decades... but I can't afford to build my own power chair (didn't have $7k lying around), so I had to call the chair dude out. He started going over specs with me and I stopped him and said "This is what my insurance will cover - given that, I want X brand, Y seating, Z positioning" etc. He put his pen down and said "Oh... sorry, I didn't check the paperwork, you're congenitally disabled - just email me what you want, I don't need to be here." ... that's a good example of "culturally disabled"... a culturally disabled person gets really invested in their tech, because it's such a central part of our lives... and as such, it's more.... accoutrement than anything. I don't have any ill feelings toward my chair, any more than an ablebodied person would have ill feelings about their legs... it's there, I use it, it's essentially an extension of my body, except I can trick it out however I want.
The first thing I did when I got my power chair (which is quite a thing of beauty, even stock) was crack the control box to remove the limiter and improve the brake response. Factory specs are set so that you won't accidentally crash it into the wall if you have poor fine motor control. Since mine's not bad, I took all that nanny stuff off.
So now I can hit 20 mph (not that I need to, but why not?), and take it off road and up stairs. It doesn't stair climb as well as it would if I'd built my own - can't do anything over 4 inches - but c'est la vie, and I can take my manual if I'm going anywhere where stairs are an issue. Next up will be wiring up my manual chair with a power supply and setting it up for "power conversion", where I can flip a switch to engage a brushless motor. I've put off doing that because my manual chair is a light and quick little thing and I didn't want to lumber it with a lot of weight, but I think I've got the battery and motor weight down to an acceptable level now, and since I'm looking at taking a second crack at university on a campus with major hills, it'll serve me better than power assist.... plus that way I'll have a backup if my factory power chair dies on me.
As you can probably see, modding accessibility tech is not at all unlike modding headphones... not everybody gets heavily into it, but almost everybody tinkers!
You're far from the only one who's never made the distinction between the Special Olympics and the Paralympics... the Paras have, until recently, always been the forgotten sibling to the "big event." This post is insanely long already, but I'm nothing if not loquacious, so here is the *why*, speaking as someone who worked at the Paras:
Until 2012, Paralympic funding and media coverage was directly tied to Olympic funding and media coverage. What this meant was, companies would bid on the Olympic rights, decide they didn’t want anything to do with the Paralympics, and drop out.
Here’s what that did to the 1996 Paralympics in Atlanta, in practical terms:
McDonalds was the winner of the “fast food sponsor” category. They didn’t want to fund the Paralympics, so we had no food at the venues. We weren’t allowed to approach other sponsors in the “fast food” category, because McDonalds held the rights (that they were choosing not to use). None of the restaurants sponsoring the Olympics wanted to sponsor the Paras, either, so we also couldn’t approach other *restaurants* to provide food. In the end, faced with ravenous athletes, hungry and tired staff, and confused attendees, we managed to find a mom and pop catering company to provide food. They couldn’t afford to comp it, so we all had to pay for our food out of pocket – not the case with food for athletes and staff at Olympic events.
Home Depot in the “home repair company” category, John Hancock in the insurance category, and Visa in the “credit card” category, also dropped the Paras, along with most others. Due to severe lack of funds, Paralympic venues were limited to “whatever is available mostly for free,” so, while some events could be held in Olympic-built venues close to the Olympic village, some were as far as 3 hours away at whatever college campus would tolerate us taking over their gym.
Coke did the right thing and sponsored both, and in an attempt to make up for the appalling behavior of most of the other companies involved, gave out “free coke” badges that you could stick in the bill slot of any Coke vending machine to get it to dispense, with no limit. Thanks to their generosity, athletes, staff and spectators were at least never without soda or (Coke branded) water. In an Atlanta August where temperatures are routinely over 95F/35C and many of the athletes have difficulty regulating their body temperature, this is the only way we avoided what could have been a disastrous epidemic of heatstroke!
And finally, the biggest issue:
NBC has had the Olympic media coverage rights for years. They remain utter jerks about covering the Paralympics to this day (which is, in part, why you’ve never seen it and didn’t know the difference). NBC, as the media rights holders in the US, are allowed to film as much of the Olympics and Paralympics as they choose, and broadcast whatever amount they choose. The same goes for the rights holders in each country, i.e. the BBC in the UK, etc. The other stations in each country may film 2 minutes, per venue (not per sport, per venue), per day. That’s it. That’s how much they’re allowed to *film*, not broadcast. That makes it nearly impossible to catch anything exciting on film, and it makes it *completely* impossible to do anything more than a tiny highlights reel, if they’re lucky. My job, as an “athlete-media liason” was to keep a list of the rights holders in my pocket, keep an eye on all the other stations, and go around tapping shoulders and saying “you’ve had your two minutes, you have to leave now.” Broke my heart to do it. The NBC guys who could film as much as they wanted? I saw them once in the two week period. They filmed 30 seconds of a medal ceremony and packed up.
It might interest you to know that in 1996, the most enthusiastic country about broadcasting the Paras was.... Iran! The Iranian rights owning station guys excitedly told me they were filming everything they could, “assemble for live feed *and* delayed broadcast! Is very big step, our country!” I didn’t have the heart to tell them it was a “very big step” that no other countries were interested in taking. The Iranian fans were a delightfully rowdy bunch, and the whole building rang with “IR-AN! IR-AN!” when their guys were playing. Definitely not what I expected, since one of my basketball teammates with cerebral palsy was smuggled out of Iran as a baby because his parents were afraid he’d never be able to leave the house otherwise! Go, Iran.
2012 was a watershed year for Paralympic media coverage in one respect. The British were immensely proud to host *both* the Paralympics and the Olympics (even allowing the Paras to share the same logo, for the first time in history), and promoted it heavily. They decided that if an Olympic sponsor dropped out of sponsoring the Paras, the auction rights would go back on the block to whatever company wanted it. As such, the Paras in 2012 were also *fully funded* for the first time in history. In addition to that, the BBC and Channel 4 got together and did a deal amongst themselves – the BBC didn’t want to show much of the Paras on TV, but they did want the radio broadcast rights. They kept those (and used them), and they sold Channel 4 joint unlimited coverage rights for television – which Channel 4 then used heavily, and proudly. It was the first time most people had seen the Paras in their own living room.
I have no idea what 2014 or future Paras will be like (though I predict NBC will keep up its unbroken streak of being jerks)... but London 2012 did us proud. It is worth noting that all of the sponsors named above (McDonalds etc) got such bad pushback from what they did in Atlanta that they are now “Proud Supporters of Olympians and Paralympians,” so the hope is that the Paralympics will be fully funded or nearly so from here on, and that no one will have to run an international prestigious sporting event on a shoestring again.
In the incredibly likely event that most countries continue not to broadcast the Paralympics because who wants to see disabled athletes do awesome things, the internet has come to the rescue... all Paralympic events are now broadcast both live and taped from
the official international website of the Paralympics – and they cover all the run up national and international championships year round, so you can see those right now, if you like.
Once again more than you ever wanted to know, but hopefully at least parts of it were interesting.
