Helping the able-bodied feel comfortable?

[jeshyr]

Just listened to the most recent Science Show discussing a Wellcome Trust exhibition called Superhuman Discusses various things humans use to enhance themselves and their performance in various areas from Viagra to prosthetics etc.

Two things they mentioned struck me - a prosthetic nose worn by a woman until she married and her husband liked her fine without it so she stopped using it. Secondly, many large ungainly prosthetics given to kids affected by maternal use of Thalidomide, these prosthetics had little function aside from 'normalising' appearance and often stopped the kids using their own limbs.

I'd love to put together an exhibition of disability/illness related stuff whose main purpose is not to help the user, but to make them more acceptable to society. Not just equipment, but drugs, techniques (Deaf oral-only education comes to mind here, and some therapies for Autism), anything that's related. I'm sure it could be worked into an exhibition if we can think it up!!

Looking for more ideas, stories, examples ... Both modern and historical would be great. I can't promise to actually get an exhibition up, of course, but I figure with the help of friends and friends of friends etc. that we probably have all the skills we'd need so it's not totally pie in the sky!

What are your experiences of disability stuff that wasn't to help the user?


[Edited to add: Please excuse my slightly migraine-addled posting!! Just to clarify - I didn't mean just any cosmetic-type thing, but specifically those which were:
- Detrimental to the person's functioning, like cosmetic prosthetics which stop you from using residual limbs, or
- Not actually wanted by the person but were suggested/imposed by able-bodied professionals, as splodgenoodles described below, or
- Not actually wanted by the person but where they felt they had to accept it to "manage" people's reactions.

There's definitely a grey area between "cosmetic thing that somebody wants" and "cosmetic thing that the person doesn't want but feels forced to use" because society can be a strong influence on our desires/wants. But my basic idea was things which are neutral-to-negative for the user, the main/only benefit was to other people.]

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Comments

[splodgenoodles]

Yep. Dad had polio and subsequently had a severe scoliosis of the spine. Was offered an operation to fix the curvature. Refused, because it rendered the patient unable to walk properly and even bedridden.

But straight-backed.

Also, massage and physio to straighten the back. Not to help him use it or to ease pain(which could be considerable) but to straighten it.

He said the best rehab person was a particular doctor (I can't remember the name) who was considered something of a maverick at the time for advising that fixing the curve wasn't a good idea, and got Dad doing excercises to further strengthen the muscles that were compensating for the curve.

I wonder if that explains why Dad never needed a wheelchair. Apparently for the scoliosis he had, it was considered remarkable that he did not.

But polio was such a stigmatising disease - visible signs were hidden as much as possible. My maternal grandmother died of it in the 1950's and my (adult)mother was told she'd had a stroke.

[hatman]

The only thing that comes to mind off the top of my head (er, so to speak) is wigs. For cancer patients, but also people like me who have alopecia.

I was very sensitive about going bald as a kid. (More so because of Mom's fussing over the matter.) I flatly refused wigs, but religiously wore hats whenever I went out in public.

Going bald isn't a disability, but it is perhaps a more relatable condition. It's easier to imagine yourself going bald and how you'd feel about it than it is to imagine yourself without a nose, for example. It might make for a good first step. It is the same general idea - a prosthetic whose sole purpose is to hide the illness. So you can pass as "normal." So that the people around you are more comfortable. But also so that they don't judge you and start making assumptions about you or trying to find ways to talk around what's plainly visible or let that visible difference define you in their minds.

[feyandstrange]

Well, sometimes making the user more acceptable to society is super important; some sculptors and artists did a lot of work to build "masks" for blokes who came back from WWI with horrible facial disfigurements from mustard gas, and it made the veterans confident enough to go out in public again. But there are a lot of 'purely cosmetic' things like that. One could almost certainly argue that breast reconstruction or fake boobs for mastectomy patients are cosmetic, but my cousin said she got her reconstruction done so her damn clothes would fit.

It is interesting to look at artificial limbs. Used to be that lots of folks would either wear a cosmetic or do without, but now that non-cosmetic limbs like c-legs are offering the wearer a lot of benefits besides just cosmetic, people are getting to be a lot more open about wearing them in public. If your assistive device is a cool techie toy, you get a lot less pity for it. (As any autistic kid who has upgraded his or her communications board to an iPad can tell you.)

The ones I really like are when prostheses and devices become art. I've seen a hearing aid made into an amazing ornament of jewels and wire, and a fabulous "corset top" that was a back brace. Somebody said recently (of my wedding pictures) that I looked so good it was like my wheelchair was a throne. ;) If I must have a medical accessory, it had better be a gorgeous one! (Or at least a distraction, as in the case of a lovely woman I saw once who was on nasal oxygen and had an enormous iguana on her shoulder.)

[feyandstrange]

THat does seem odd, although polio rarely kills outright? Is it possible it was complications of polio rather than polio itself?

I was just reading up on polio again and there were some ghastly treatments. Hadn't run across many cosmetic ones though. THe non-cosmetic ones were bad enough!

[hatman]

Actually, I just remembered an ad I saw for SmileTrain in the NY Times magazine. I can't find the one I saw, but a Google Image search for "smile train ad" will give you a good idea.

They're a charity whose sole purpose is to get plastic surgery for kids born with cleft lips and/or palates. Again, it's not really a prosthetic, but it is a change made pretty much purely for looks. And, of course, Smile Train makes a huge deal of how much it can affect a kid's life.

[jeshyr]

Oh good point ! Nothing at all wrong with cosmetic stuff of itself - I was thinking of stuff imposed or unwanted, or where PWD feels they must use it because people are uncomfortable otherwise. .. It is a fuzzy boundary certainly though.

[acelightning]

that's not "just" cosmetic. an infant with a cleft lip may not be able to suckle, and an older child may not be able to chew properly - in each case, it makes it even harder for the child to avoid malnutrition (in a place where nutrition is already a problem). it also interferes with speech, and therefore language development. yes, a face with a cleft palate is disturbing to look at, but it's also an impairment of important life functions.

[acelightning]

most blind people still wear sunglasses in public, because it's disturbing to sighted people to see eyes that wander about and don't track or focus. and a person with one eye usually wears a lifelike replacement - although this also helps keep the empty socket from shrinking and causing even more facial deformity.

and i knew someone who had a "withered" arm - literally, the muscles seemed to have wasted away; i don't know whether this was the result of polio or an injury. her hand looked okay, but nothing worked very much. even in warm weather, she wore long-sleeved tops. ironically, she was a pre-op transwoman, and the reason i knew what her withered arm looked like was that for a year or so she was a member of the coven i used to belong to, and we worked "skyclad". she was far more embarrassed about the appearance of her arm than she was about her penis.

[jeshyr]

Good lord, that's hideous!! There was a girl in my class at MLC who had pretty severe scoliosis and refused the operation because it would have meant spending a year lying in bed recovering from it and she was more interested in living her life - I admired that decision at the time.

[jeshyr]

I wasn't meaning strictly only for "disabilities", so baldness is totally something that would be within the scope of what's in my head. Please forgive my slightly disjointed/unclear words here - I've got a really bad migraine today and it makes my thinking a bit loopy!!

I can imagine that wigs would be something that falls right in the middle of the grey area between "person actually wants this" and "person doesn't want this but feels forced to use it because of how society reacts" with some peolpe at each end and most people somewhere in the middle...

I have a slightly weird experience related to hair actually ... this isn't really relevant to my post but, yeah like I said migraine-loopy! One of my diseases is treated by a haematologist and he works in medical oncology at the local hospital, which is where they do a lot of chemotherapy for day patients too. So basically the waiting room is always mostly full of people with blood cancers, with just a few of us oddball rare conditions hanging around. When I got my hair cut off short again everybody suddenly assumed that I had cancer the next time I turned up in that waiting room ... it was quite odd! I don't know what they thought before that, but with my suddenly-cut-short hair I got people speaking to me who had made the assumption so I noticed it.

People's assumptions can be surprising!

[jeshyr]

sometimes making the user more acceptable to society is super important;

This is totally a hugely good point - thanks for pointing it out. I love those art pieces too, it's so subversive to make equipment into art instead of hiding it!!

Anyway, I have updated the post to clarify that I meant unwanted things specifically - although it's a very grey area. Thanks for making me think :)

[jadelennox]

Yeah, I hate the smile train ads and mailers I get because they make it SEEM like their goal is to correct an unslightly cosmetic problem; they send me money-begging mailers that never mention the nutritional problems. I learned about those much later; Smile Train clearly thinks fixing the Ugly is a bigger draw than potentially saving lives.

[jadelennox]

If the person has cognitive disabilities there can also be a "doesn't care" more than a "doesn't want". My mother makes sure my sister is always wearing a cap to cover her bald spot, and my sister just doesn't care one way or t'other, because she's not really with it enough to notice something she can't see.

For a long time she also made my sister use a walker -- which was terrible; she fell and cracked her head and knees pretty regularly -- because a wheelchair bothered my mother in its symbolism of... having given up the battle to disability, or something. Ironically until she got the chair she had to wear a helmet to protect against falls, which made her see much more disabled to the wider world ("Would she like a glass of water?" "I don't know, why don't you ask her?" If wheelchairs wig people out, helmets are way worse, in our experience; they're like a pop culture symbol for all those horrible ableist stereotypes about the short bus / special ed / kids with seizures etc.). Once she got the chair she lost her remaining muscle mass, but she also stopped injuring herself and got a little more with it, since her small stash of cognitive spoons stopped being spent on not falling.

[pauamma]

Does being made to wear toothbraces count?

[tangent_woman]

Personal/family/historical anecdote: My mother's mother was forced to wear "shoulder straps" as an adolescent to correct her slouched posture (not an actual structural problem, just unfashionable posture) which was referred to as "round shoulders". She was clearly traumatised by the experience because when she was old and had had a couple of debilitating strokes, she was hospitalised; her memory would wander and she would wail "I don't want to wear shoulder straps!" and weep in great distress for hours on end. She could be consoled briefly by staff or visitors who would reassure her that she would not be forced to wear shoulder straps again, but would click back into her distraught state of horror over wearing shoulder straps within minutes. (My mother used to threaten me that I would have to wear shoulder straps because she told me I was round shouldered, but fortunately for me, that was no longer an option by the 1980's) I suspect that the stigma of poor posture was borne out of the fear that people would mistake it for the results of having had polio or having scoliosis or similar.

A literary reference: In the Stephen King novel "The Stand" there is a character, Tom Cullen, who has an intellectual impairment. I do not recall the exact description of his condition, but it is noted that he would have moments in which he appeared to shut down and become oblivious to his surroundings; this is when he was having as close as he ever experienced to a normal thinking process. His father was embarrassed by such incidents, however, and used to prod him to disrupt his pauses for thought so that Tom would look less weird. I posit (and I suspect that the author intended this) that this discouragement of Tom's unique but effective thinking process caused detriment to Tom for the comfort of the people around him, particularly to spare his father embarrassment.

Not sure if either of those are useful in this context, but they do seem vaguely related.

[splodgenoodles]

There was another one too - not cosmetic - at Bendigo Base Hospital someone thought radiation would be good for the polio kids. He got half an hour a day under the x-ray machine for a while.

It certainly killed- Dad was expected to die, and in the early stage. It always crippled. But I don't know the figures.

[feyandstrange]

I had forgotten that it can kill if it takes the lung functions. Sorry. I didn't mean to be insensitive and jerk-like there.

Bizarrely, it doesn't always cripple. Depending on the strain of polio virus going around, most people will just get a flu-like mess. Older you are when you get it, more likely you are to have the permanent effects of paralysis etc. but many people get it and get nothing at all. Some strains are worse than others, others it's like 1 in 200 or more that you'll even feel sick and more like 1 in 1000 that you'll have permanent damage. But it wasn't usually *called* "polio" until it hit the meningitis and paralysis stage. And not knowing how to treat it then meant horrible tortures for most of those kids and adults who did get sick. IF it was just the limbs, you would live but crippled, but if the paralysis reached the torso you were probably dead, or at least short-lived and in and out of an iron lung. SO yeah, someone whose spine was hit - they wouldn't have expected him to last.

I'm writing up a character who gets polio in 1979, which is about when the last wild US outbreak happened, and have been doing a bunch of research on the crazy virus, although not as much on treatments, especially historical. But there was a huge outbreak in the 50s that killed and crippled a lot of Americans right before and during when the first immunizations were becoming available. I've also got a friend who has polio (and post-polio syndrome, which is a lot like CFIDS/ME) who is closer to our age, and I'm basing some of this character's history on his.

[hatman]

Addled brain I totally understand. No need for apologies.

And yeah, wigs are very much in that grey area. Which is kind of why I was thinking they might make for a good first step.

It's something that varies from person to person, but is also very much gender and age specific. Men bald anyway as they age, and then in the last couple of decades we've had people like Michael Jordan and Patrick Stewart make it a style. I was sensitive about it as a kid, but now I often don't give it a second thought. (Except that I do wear my Jewish Star outside my shirt so I don't get mistaken for a skinhead, which has happened a couple of times.) OTOH, it's very different if you're a girl. A girl with a bald/shaved head really stands out. It's a strong statement, and one she may not want to make.

[vass]

Speech therapy, when it's for things like 'fixing' a person's perfectly comprehensible accent, or for a stammer or stutter that doesn't bother the patient or affect clarity. (I'm voluntarily going into speech therapy for my stammer, because I want to be a telephone counselor and you can't do that if you sound anxious, but I sacked the speech therapist who told me that what I needed to do was construct a persona of being fluent, and then just act myself into that role 24-7 for the rest of my life. Um, no.)

Training people on the autistic spectrum not to stim. (I didn't get any official therapy along that line, but my older brother shamed me out of flapping my hands.)

Making lefties into righties.

[acelightning]

giving Smile Train the benefit of the doubt, i'd think that they are willing to emphasize "fixing the Ugly" if it gets them more money, even though they know that the feeding and communication aspects of their work are far more important.

[pauamma]

This may not qualify, cuz ablebodied outside observer, but:

Of the manual wheelchair users I see pushed by an ablebodied person (friend/family member/paid attendant/whoever) - or at least by a walking person, who may or may not have a disability that doesn't keep them from walking and pushing a wheelchair - how many actually lack the stamina to wheel themselves, and how many who have that stamina, or who could and maybe should develop that stamina - whether it's upper body strength, endurance, or whatever - are prevented from doing that because someone will insist on pushing them?