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Wheelchair invisibility
What follows is a simple story, its essentials so familiar to some people as to have become, to them, trite, and yet still regrettably relevant.
In my early twenties I worked with a guy named Herb. When I say “worked with,” what I mean is that Herb was my job. Herb was a very smart and compassionate man, father to three adult sons, an athletic guy who told stories of his early life as a Merchant Marine, and who had settled into life as an aging hippie, unremarkable on a crowded Berkeley street except for his use of a particular accessory: a power wheelchair, which Herb drove with a chin lever.
Herb suffered from Amyotrophic Lateral Sclerosis, a.k.a. Lou Gehrig’s disease, a degenerative condition in which the neurons associated with voluntary muscle control die slowly. Voluntary muscle control includes breathing. The disease is uniformly fatal. The mean survival after diagnosis is about three to five years: Herb beat the odds by more than a decade, and continued learning new skills and socializing and political activism pretty much right up until the end.
I was Herb’s morning attendant for about a year and a half. When I met him he was a quadriplegic, still able to move his hands slightly, but otherwise with no motor control below his shoulders. I’d bathe him in bed, change his Texas catheter and piss bag, dress him, lift him out of bed and into his chair, and then make breakfast. Once a week or so we added climbing into the shower together to the routine. There’s something about getting naked in the shower with your boss on a regular basis that makes the workplace dynamic a bit different from the usual. Herb was much more friend than employer. I miss him.
That’s the background. This is the story.
We went out to dinner. Herb had a date with some friends and asked me along, partly to socialize, partly to feed him. It was a small Vietnamese restaurant in Berkeley, a few years before they became as common in the Bay Area as they are today. Somewhat incongruously by today’s standards, the place had a largely white service staff. The six or so of us went to our table, I got Herb situated at the section where his chair could slide underneath, and we chatted for a while until the bright college kid waiter came to take our order.
Twenty bucks says that any disabled folks reading this know exactly what happened next.
Bright College Kid took orders around the table, got to me. I ordered eel. Funny what you remember after 24 years. BCK wrote on his pad, looked back up at me and said “and what is he having?” I shrugged and looked at Herb. Herb looked at BCK and ordered an entrée. BCK, looking at me the whole time, nodded, wrote, and then asked me “does he want something to drink with that?”
Amyotrophic Lateral Sclerosis has little if any effect on cognition, excepting during that last part where you suffocate to death. Herb looked alert and focused at all times, even at six in the morning the night after a party. He was often short of breath — his lung function had already taken a pretty big hit — but aside from that, there was nothing to indicate that he couldn’t hold up his end of an argument on Wittgenstein, much less a drink order.
“I don’t know,” I said.
Today is Blog Against Disablism Day. If things had gone just a little differently about three years ago — if the camper shell on my pickup had collapsed just a little more when a distracted driver ran a red light, and my truck came to rest upside down in the intersection — I might have been typing this story out with a chin stick the way Herb wrote his letters in 1982. The cliché is that “The Disabled” is the only disempowered group with an open admissions policy. By this time tomorrow you could be looking at a life in which waiters ask your attendant whether you want home fries or hash browns. The fact that this will be the least of your problems doesn’t make it any less obnoxious.
I wonder sometimes if my friend Carla had this in mind when she steered her wheelchair onto those late-night train tracks last year. The life with cerebral palsy wasn’t enough: the doctors had told her that her bones were weakening, and it increasingly hurt to get out of the chair and walk. If a waiter had ignored her in a restaurant, every single person in the place would have heard her upbeat, outraged “hey!” Even she had an edge past which she could not go. She rafted the West’s wildest rivers, howling delight: she taught herself to ski steep Sierran slopes, and inspired a generation of athletics programs for the disabled, and yet the notion of being in the chair for good took the life out of her, her mother told me.
I cannot imagine that it was the mere obstacle the looming paraplegia offered that made her quit. When she stood she was visible, a raucous presence, the life of the party, a comet trailing jokes and crumbs and passion. Her family told us at the memorial of the loneliness swelling in her, the longing for love. I can’t help but wonder if the prospect of wheelchair invisibility was too much for her to bear.
Crossposted at Bitch, PhD.
Posted by: Chris Clarke
Note: A database glitch in 2008 ate a bunch of archived comments. Don't be offended if yours isn't here, or confused if the conversation seems disjointed. Thanks!
A brilliant and wonderful reminder, thank you Chris…
I think of my bi-polar friends today and those others out there with mental diseases. We humans learn early on to fear craziness more than nearly anything else we fear. We fear it because we have a sense that there, with the exception of this or that gene or neural connection or neurotransmitter problem, is someone we could be. And this fear makes us hide from them, turn away from them, stop thinking about them. Our apathy encourages systems to treat them with chemical restraints and cast them off into the refuse of homelessness and vagrancy. So today, don’t be afraid of them, look at them, and say hello.
By: By spyder on 2006 05 01
excellent, chris. and spyder, too.
my tales are more sparse, and smaller in scope. my nephew had brain cancer, which he fought hard, but he spent 3 years barfing. any trip outside the hospital or home was an adventure, one he needed. if a baldish skinny kid runs to the wastebasket in a store to barf, don’t look on him and his crew as uncouth aliens.
we noticed the stupid waiter thing, also, when my grandmother had alzheimers and was in a chair, and when my dad was ill with cancer—both needed a little extra time. it is a variant on asking parents to order for their kids, which infuriated my small-for-age kids to no end—but while my kids would eventually outgrow it, my other relatives did not have that luxury, or need the added heap of disrespect.
By: By kathy a on 2006 05 01
p.s. chris—thank you for remembering herb and carla, friends you knew well, in their strengths and humanity.
and p.s. spyder, thank you for speaking out in such a compassionate and thoughtful way about the “invisible” disabilities.
By: By kathy a on 2006 05 01
“The cliché is that ‘The Disabled’ is the only disempowered group with an open admissions policy.”
Very well put.
The primary “disability” I’ve dealt with in my own life has been severe old age—it runs in my family, which makes me pretty lucky, I guess. Some of my elderly relatives were physically disabled—confined to wheelchairs, reliant on walkers, etc—but that never bothered me as much as the ones who developed some sort of dementia—senility or Alzheimer’s or something. It was hard to talk to them (particularly as a little kid) and it was scary to see how fragile identity was. Some of them felt they lived too long and some felt they weren’t ready to go.
So not only is “the disabled” the only disempowered group with an open admissions, it might also be the only disempowered group that, given a choice, we would prefer joining to the alternative. Which means we should all think about what kind of treatment we’ll want if/when we do join it.
By: By Holly on 2006 05 01
Just a note, and a story, in appreciation of care-givers.
Eternal gratitude to those who take care of us when we can’t. So many do it with love and generosity of spirit.
The story: my mom, towards the end of her life, had lost all her words; so when the doc asked “Mrs. Hayes, may I turn you over?”, she gave her negative response by reaching up and slapping his face. He was kind enough to understand what she meant.
So many of the folks who took care of her were foreign-born. I’ll always be grateful to them.
By: By R. Hayes on 2006 05 01
I have worked communications for several “disease” non-profits, as we call them here, including an umbrella org for mental illnesses. Mental illness is the most difficult of disabilities to get others to accept; as you have said spyder. One of the guys I liked best had the best idea; get a guitar. ;)
By: By Pony on 2006 05 01
Thanks for that Chris, and Spyder too, I am psychiatrically disabled and out of the closet, aka “attention whore”, in some circles, and have been online tonight looking for the posts that touch on mental illness and/or the draconian human rights violations that are daily fare for many of those so labeled.
There was mention of Alzheimer’s in the thread, another population close to my heart and want to share a letter to a son of a woman I worked with and have placed the link in the url space, but if that’s too presumptuous, no problem, just delete with no worries.
By: By flawedplan on 2006 05 02
A year and a half ago, my sister and I sat in a doctor’s examining room with my mother (78 and perfectly mentally coherent). She’d fallen and badly slashed her arm, and the wound was infected. The nurse who did the preliminary exam talked to Mom, but the doctor talked to my sister and me, referring to Mom in the third person. He’d ask us a question about her, we’d look at her, she’d answer and he’d write it down.
After Mom was out in the waiting room again, I told the nurse to please tell the doctor that he might be a great doc and all that, he should really learn to talk to his patients unless otherwise directed. And no, I couldn’t tell him that while Mom was there, she’d have waved me off for making “a scene.”
And don’t get me started about having dinner with deaf people outside of Rochester. Rochester has a huge D/deaf population, and servers are used to sign language. Many many service employees have enough sign to get things done with their Deaf customers. But in other cities? Oy.
By: By Vicki on 2006 05 02
After a long day and night of pondering on this post I remembered this observation made while volunteering at a spinal cord injury rehab centre some years ago. All the male paras and most of the quads had numerous women attendants, both of the formal, informal and SI kind. None of the women had any but the formal kind.
You can make of that what you will. I’m confident you will.
By: By Pony on 2006 05 02
Whoops.
SO. Significant Other.
And while I’m back: I also noted that the majority (in fact all but one) of the women there had illnesses like M.S. or Guillan Barre Syndrome, not injuries. The men were being rehabed from injuries, so I asked the clinic head about that. The men were there with spinal cord injuries caused by risk behaviour. He said most profoundly inured were men between the ages of 18-35 and virtually all were risk behaviour injuries such as motorcycle riding, diving into rock infested lakes etc.
The women might have had sisters or mothers, or paid attendants. But they had no lovers with them. The men all did. Always. WTF? But I know WTF.
I think if your friend did go out into the path of the train, it might have been that. To never be loved again or experience something so basic to us; our sexuality shared with another human being.
By: By Pony on 2006 05 02
It’s so funny, something like that happened *today*. But I didn’t really recognize it, because one of my issues is that I haven’t left my apartment for the last four years (except for doctor’s visits and now I have a therapist that comes to my home finally). Actually, it’s a little bit different, but same general thing.
Also.
I’m alone. I certainly always will be.
While I am strong enough to live out the rest of my life alone and to die that way, it’s really not what I would have chosen.
Too much to say, not enough words to say it with.
Thanks, Chris.
Also, I’ll pass along the kind words to my home care provider.
Love,
Hanna
By: By Hanna on 2006 05 02
I remember years ago the BBC had a radio programme which dealt which issues concerning disabled people called Does He Take Sugar? The title came from the experience of the presenter who was talked about but never to.
By: By craig on 2006 05 03
Hey Craig do you like Jimi?
http://www.radioblogclub.com/fav/0/632580/0
By: By Pony on 2006 05 03
Oh I am sooo not good at anything tech; but I love finding neat stuff online:
By: By Pony on 2006 05 03
A beautiful post, Chris. Thank you for that.
I’ve recommended the documentary Murderball to everyone I know, and if you haven’t seen it, I think you’ll find it a wonderful film.
Having a mom who worked in a nursing home the whole time I was growing up, I thought I was more comfortable with people in wheelchairs than some folks… but I still felt a surge of introspective guilt when I saw the guys in Murderball. It’s so wonderful and, I think, would alter many people’s pre- / mis-conceptions about folks in chairs, to hear and see a bright, vibrant, and incidentally, quadriplegic young man say tauntingly “What, you’re not gonna hit a kid in a chair? Hit me, dude; I’ll fuckin’ hit you back!”
Yeah :)
By: By Chuck on 2006 05 04
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