Culture of disability

wheelchair_whee_steinMy partner and I both have disabilities, officially certified by the State of Texas.  I’m partially deaf and my partner is legally blind.

Other than that, we’re “normal” people, who lead “normal” lives.  We are gainfully self-employed, we hold state healthcare licenses, and we get ourselves to work and back each day.  We keep a clean apartment and two fantastic cats.  We don’t draw any financial assistance; in fact, as self-employed people, we pay twice the income taxes as most.  Life seems pretty normal.  In fact, we often forget about each others’ (and sometimes our own) disability.  But when we interact with other people, especially on their home turf and away from ours, very subtle differences emerge, visible only to those who are paying close attention.  I have realized that there is indeed a different, unique culture to our own household.

My partner is legally blind.  This means that he can see enough to move about and generally care for himself, but he cannot pass the visual test to obtain a driver’s license.  He’s right at the cutoff for legal blindness, which is 20/200 (most people are correctable to 20/20 with glasses or contact lenses).  He was born with congenital cataracts, a rare condition with a strongly suspected association with possible paternal chromosomal damage from an Agent Orange exposure during the Vietnam War, and the cataracts were removed.

Well, cataracts are simply damaged opaque lenses, so removing them meant removing the lenses, and as was standard procedure at the time, all the supporting structures (ligaments, tiny muscles, etc) went with it.  (These days, cataract removal is immediately followed by new cutting-edge-generation lens implants that look and feel more and more like the original parts.)

Because he is blind, he has spent a lot of time in various camps or schools for blind people.  He did attend regular schools right along his normally-sighted peers, but he went to special extracurricular camps for visually-impaired people and met with different counselors for specialized career advice.

His visual problem put him in touch with people that you or I may never otherwise meet – specialized low-vision career counselors, counselors at camps for the blind, special departments at school, state services for the handicapped, specialized optometrists, and of course, other people who fall onto varying points along the visual disability spectrum.

The spectrum of visual disability ranges from the minor imperfections correctable to 20/20 (most people with glasses in the general population) to no vision at all.  A surprising number of people fall somewhere in between.  Depending on the degree of blindness/disability, these people may get to straddle between the Blind World (special schools, programs, and state services for the blind) and the Sighted World (those of us with normal or correctable vision).

My partner is one such person.  Another friend of ours is totally blind.  Their past experiences and current lifestyles gave me one hell of an education.

One thing I learned was that it’s much better to talk about the disability than it is to tiptoe.  When we first started dating, my partner said that he’d rather I bring up any questions or concerns immediately so that we can address them head-on, than let them linger and fester, while potentially-inaccurate assumptions take hold.  Blind people prefer the term “blind” or even “visually impaired” rather than the politically-correct pseudo-speak such as “visually challenged” or worse, “handicapable”.  Political correctness often makes disabled people gag.

Another thing I learned is, not everyone who is blind walks with a white cane.  When my partner first revealed to me that he was legally blind, he quickly followed up with the explanation that he didn’t bump into things (at least not any more than the rest of us), nor did he walk with a white cane or wear shades to hide his eyes.  He can read and write like a normally sighted person; he just has to do it up close.  His reading skills are equal to those of anyone else; however, it’s more physically demanding for him.  Because of the close proximity he must maintain between himself and what he’s trying to read, he either has to slouch way down or hold a book right up almost to his nose.

I was floored by the amount of neat technology out there to assist people with visual problems.  Most people are at least aware of large-print books, but the rabbit hole goes deeper.  Special computer screen enlargement software allows one to zoom in on any aspect of the screen to see a small object more clearly.  Talking alarm clocks tell you what time it is without having to look.  There are large-print playing cards, Braille readers, powerful hand magnifiers, and special phones.

One thing that surprised me was that US States that claim to have intense progressive programs and services for handicapped people usually don’t.  Some of the “red states” that don’t typically carry a handout-ready reputation are often much friendlier to those with disabilities.

Case in point: Minnesota vs. Texas.  Minnesota seemed to pursue an aggressive revolutionary handicapable policy, but it turned out to be a lot of lip service.  There wasn’t much by way of financial assistance, competent job placement programs, college tuition breaks, or fair hiring practices (even in the public sector!).  They were proud to show off their bright blue newly-painted handicap spaces, and that got a lot of press, but that’s about the extent of their generosity towards those with disabilities.

Texas, on the other hand, has a fantastic (by comparison) job placement program, full funding for tuition and initial supplies required of his chosen career, and competent vision doctors who outfitted him with all kinds of low-vision aids.

I learned that blind people can indeed make something of themselves, beyond meaningless vocations.  My own partner went all the way through a pre-med college program and finished med school, having studied the same material and answered the same test questions as any of us.

I’ve learned that blind people who are told they’ll never do one thing or another can have the last laugh by proving everyone wrong.

I’ve learned that blind people are often given up on, largely because those around them (teachers, parents, friends, relatives, babysitters, tutors, etc) don’t know what to do or how to handle them.  Sighted people don’t truly understand what it’s like to be blind, and they fear that which they don’t understand.  Sometimes this fear manifests as irritability or exasperation.

I learned other things about the blind underground.  Many blind people, especially those who are totally blind, are very angry and resentful of their condition.  They are often pissed off at the world and may walk around with an understandable chip on their shoulder.  Why not?  They got the short end of the stick, and there’s nothing anyone can do to fix it, at least not yet.

I also learned that many blind people are understandably unproductive.  There are severe limits on what a blind person can do in a sighted, visually-dominated world.  I learned that not all blind people read Braille.  And I learned that blind people often have tender hearts underneath.  They are often thrust helplessly into a role of mandatory trust – for example, they often have to ask strangers what denomination of dollar bill they’re holding, and they have no choice but to trust that stranger to tell the truth, without pulling a scam.  They often have to ask a store employee for shopping assistance, and they have to trust that the employee picked out the right item, charged the right price, and gave back the right change.  I would be terrified to have to live that way.

As for my own disability, I don’t have it nearly so bad.  I’m slightly hearing impaired.  It stems from an autoimmune disorder that seems to run in my family; our immune systems attack our inner ear structures and kill off the nerve endings that deliver auditory signals.  The nerves die, and at least a portion of hearing is lost.  The pattern of hearing loss is much like that which happens as we age; at 29, I had the hearing of a 69-year-old.  Go me.

I first noticed that I was screwing up words (what I thought I heard was not what the person actually said) around age 21.  I was working in the smoky, hazy bars, and thought that my hearing issues were due either to the crappy air or the loud bar bands/jukebox, and so I thought nothing of it.

By the time I “retired” from the bartending scene, I assumed I had some mild hearing loss due to long-term noise exposure and by then, some pretty intense cell-phone use.  Not great, but not a huge issue.

Over the next few years, I figured that I had some waxy impaction in my right ear, so when one of our med school profs started talking about deep ear cleaning kits, I wrote down the information and picked up a kit.  I was excited; after this, I’d be able to hear again.

No such luck.  After a couple days of intense, correct use, I noticed no change in my hearing abilities.  It was then that I decided to get tested.  The test revealed what I expected: a severe dip in the vocal range in my right ear.  But the test also revealed something I had NOT expected: a similar severe dip in the same range in the left ear.  Well, shit.  And the other surprising detail was, my pattern of hearing loss shared nothing in common with that of typical noise-induced hearing loss.  Well, shit again.

This meant that there was something else going on.  I wasn’t old, so rule out presbycusis (age-related hearing loss).  It wasn’t noise-induced (no pattern), and it wasn’t simply cell-phone use (because it was in both ears and I always use my right ear on the phone).  The other two differential diagnoses were bilateral acoustic neuroma (which is rare, but can happen), and Meneire’s Disease.  A clean MRI ruled out the acoustic neuroma, and I don’t have the “drop attacks” that are a hallmark of Meneire’s.

That left autoimmunity.  As we learned about autoimmunity, I realize that I got off both easy and hard.  There’s so much that is wrong with me, but also so much that isn’t.  Although there aren’t yet any specific, conclusive tests that confirm inner ear autoimmunity, you can put the pieces together and if it walks like a duck and talks like a duck, it’s probably a duck.

Through my disability, I learned that it’s one of the tougher ones because people don’t readily see it.  If they don’t know something’s wrong with you and they think you’re normal, they lose patience when you don’t respond to their attempts to get your attention.  Or when you have them repeat things.  Or when you give a response to something you heard incorrectly.

Post-doctoral seminars and classes can be especially challenging if the ballroom/auditorium acoustics are poor.  Good audio quality of phone systems becomes very important. Seating arrangements are important; sitting near the front of a classroom is an obvious example, but lots of partially-deaf people have one “good” or “better” ear that must be considered, so they may position themselves in a certain spot at the family dinner table such that the conversation takes place on the side of their “good” ear.

Hearing impaired people can be irritable, too.  It’s easy to lose patience with someone with a soft or timid voice or a foreign accent.  It’s emotionally tough not to be able to hear all aspects of a song on the radio, or to sing along on-key.  Hearing aids are OK, but they tend to fight with phone handsets/receivers, and in the end, you have to pick one – leave the hearing aid in and get off the phone, or stay on the phone and take the hearing aid out.

Hearing aids do open up a new world, but it’s not the same world you left when you lost your hearing.  It’s a tinny, imperfect, manufactured world in which things don’t quite sound right.  It’s easy to get neurologically overloaded with a sudden boost in incoming auditory information to the brain, too; this also often manifests as irritability.

If the hearing impairment is severe enough, it’s easy to feel alienated, especially in conversation.  Lip reading is a learned skill.  Not all hearing impaired people use sign language, either.  We tend to talk loudly, because we can’t hear our full volume.

With any luck, a hearing impaired person can keep a sense of humor.  Sometimes we hear things (very) incorrectly, which is like playing a grade school game of telephone, where Person B repeats to Person C what s/he thought Person A said, and by the time you get to the end of the 20-kid line, the ending phrase is wildly different from the beginning phrase.  I know for a fact that I was responsible for part of that metamorphosis.  This can get random, which can get funny.  Sharing a good laugh about it is a healthy way to deal with the stresses that arise when you’re missing full use of one of your senses.

And it’s that humor that has taught me the most important lesson in the disabled world: the concept of “adapt and overcome”.  It’s a crucial ability for those with disabilities and the able-bodied people that surround them.  It amazes me just how well those of us with handicaps can adapt to their situations and overcome much of their hardships.  This adaptation doesn’t change the fact that they can’t see/hear/walk.  But it does transform our lives.

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6 thoughts on “Culture of disability

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