Stephen Hawking eulogies and ableism

[Ambivalid]

@Guinastasia

Well, the whole Deaf community (and yes, that’s Deaf with a capital D) is a whole different story all together. That would probably merit its own separate thread, in fact.

+1

[DavidwithanR]

The conflict about [beating a disability] vs [learning to live with a disability] is a ridiculous one, and one of the biggest forms of ableism.

There is no such thing, ever, for anyone, as “beating” or “overcoming” a disability. Imagining that there is such a thing, is to be out of touch with reality, pure and simple.

If you know someone who “beat” their disability, all it proves is what a lazy-ass they were, before so-called “beating” a disability that they never had in the first place.

[Urbanredneck]

Along with my work with special needs, some of the toughest cases are the kids or adults with perfectly sound minds but who have these messed up bodies. They get frustrated because they dont fit in well with the typical handicapped community yet dont totally fit in with the “normals” either.

Now some handicapped persons have awesome little sub-communities. Like for example wheelchair athletes, little people, the blind, or the above mentioned deaf community.

[Broomstick]

@Urbanredneck

Along with my work with special needs, some of the toughest cases are the kids or adults with perfectly sound minds but who have these messed up bodies. They get frustrated because they dont fit in well with the typical handicapped community yet dont totally fit in with the “normals” either.

My late spouse dealt with this - most of the stuff for people with his disability focused on kids because, until recently, most people with the condition didn’t survive to adulthood (of all the kids who had his disability he went to school with he was the only one to reach 20). Life expectancies have improved considerably these days - to around 45 - but he still exceeded the average by a good 12 years. When he ran into the director of the Illinois spina bifida association at a charity event in the 1980’s (for something else, not SB) he was told he was most likely not only the oldest person with that condition in the state at the time, but the oldest person in Illinois with SB ever. Their website still doesn’t have anything about “living with spina bifida” past early adulthood. As he aged it was all unknown territory - there simply isn’t any literature about people with his level of SB in middle age.

Being a medical outlier isn’t much fun.

[Jasmine]

@Ambivalid

Now one thing to keep in mind is quadriplegic does not mean all 4 of your limbs are totally paralyzed and non-functional. It means that all four limbs have at least some degree of paralysis. Many quads have limited use of their arms, with hand function being the most impaired.

And believe it or not, you can be a quadriplegic and still be able to walk. ‘Walking quads’ are those whose injuries are much more pronounced in their arms and upper bodies, while the legs and lower bodies, while still impaired by paralysis, are to a low enough degree to allow some form of upright ambulation.

I had no idea! Thank you for the information.

[Urbanredneck]

@Broomstick

My late spouse dealt with this - most of the stuff for people with his disability focused on kids because, until recently, most people with the condition didn’t survive to adulthood (of all the kids who had his disability he went to school with he was the only one to reach 20). Life expectancies have improved considerably these days - to around 45 - but he still exceeded the average by a good 12 years. When he ran into the director of the Illinois spina bifida association at a charity event in the 1980’s (for something else, not SB) he was told he was most likely not only the oldest person with that condition in the state at the time, but the oldest person in Illinois with SB ever. Their website still doesn’t have anything about “living with spina bifida” past early adulthood. As he aged it was all unknown territory - there simply isn’t any literature about people with his level of SB in middle age.

Being a medical outlier isn’t much fun.

Very similar to what we are seeing with downs syndrome. Years ago they rarely lived to age 30 and now are living to their 50s and 60s.

[Broomstick]

Yes, but apparently there are more people with Down’s in their 50’s than people with his level of SB in their 50’s.

Based on the research I’ve done on the subject, It is becoming apparent that people with SB are at a much higher rate of bladder cancer than the general population, they get it at much earlier ages than the average person, and when they do get it (even while being carefully monitored for bladder health) it is often discovered at an advanced stage, and it’s very aggressive. Of course, there was no way to know this until people with SB started living past their early 20’s, which is a fairly recent development.

[Jasmine]

@Urbanredneck

You see something like this in the deaf community where they are against cochlear implants saying that their is nothing wrong with being deaf.

Also little people are against bone lengthening procedures.

I strongly suspect that in cases like these, it’s a matter of, “Misery loves company.”

[Broomstick]

Well, limb-lengthening procedures are risky, painful, and arguably much more dangerous than installing cochlear implants. If a cochlear implant doesn’t work you basically have a few scars on the side of your head and some useless but inert hardware in your skull. If limb-lengthening doesn’t work properly you can lose the use of the limb or wind up an amputee. So, in my opinion (which may or may not count for squat with the people concerned) there are more reasons to oppose limb-lengthening, or at least approach it with a great deal of caution, than there are reasons to oppose cochlear implants.

But, just to be clear - cochlear implants won’t help every deaf person and I’d oppose their inappropriate use.

[MaxTheVool]

@DavidwithanR

The conflict about [beating a disability] vs [learning to live with a disability] is a ridiculous one, and one of the biggest forms of ableism.

There is no such thing, ever, for anyone, as “beating” or “overcoming” a disability. Imagining that there is such a thing, is to be out of touch with reality, pure and simple.

If you know someone who “beat” their disability, all it proves is what a lazy-ass they were, before so-called “beating” a disability that they never had in the first place.

I’m far from an expert on disabilities, but this seems like a hugely over-absolute statement. You’re saying that there is NO ONE who, when describing their own life trajectory, would say something like “yeah, when I first lost my hearing/was in that car accident/got the diagnosis, I gave up and just cried in bed for a week. I was sure my life was over. But now I have just as active and full a life as I did before. I really feel that I beat my disability.” or words to that effect? Or are you saying something else? And I’m honestly not sure where the “ableism” in your statement comes in?

(Or are you saying that for everyone who has a disability, there are people who believe that the disability can be totally nullified purely by hard work and guts, and therefore, anyone who doesn’t nullify it is a pussy, they should try harder, and that’s the ableism?)