Category: Disability Perspectives

I was walking in the rain when it came to me: the umbrella was probably the first ever disability accommodation. Now stay with me: a hat is just a status symbol—"always was"—kings wore hats and papal retainers, etc. Roman centurions…But the average ancient schmuck didn’t have a hat. (Have you ever seen a picture of a caveman with a hat? I thought not.)

So let’s say that for the majority of human kind’s time on earth only .0005 percent of the tribe had headgear. This is a conservative estimate. There should probably be another couple zeros in there.

As always, there’s an argument about who first invented the umbrella. There’s usually a dispute about the origins of anything that’s held dear by the citizenry. The Russians claim to have invented baseball long before Abner Doubleday. Everyone knows that the Chinese invented pasta but no one knows why they invented it since they didn’t have Romano cheese. I digress…

Throughout most of human history the vast majority of people have had to walk places in the rain and without hats.

Think about it: the umbrella (which was probably first constructed from a failed attempt to make bagpipes…) was the first "thing" that made up for a human design flaw. Unless you were the king or the pope or a Roman centurion you weren’t born with a hat.

Like all reasonable accommodations the umbrella inconveniences nearly everyone.

Don’t kid yourself. The bumbershoot is our prosthesis.

"Why," you ask, "is walking hatless in the rain a disability?"

Because it causes uncontrollable mumbling and direction loss.

Of course if you have to ask the question you need to get out of the castle more often.

S.K.

I have a friend who is "hard of hearing" or perhaps, in certain instances she is "deaf" and depending on the further circumstances, she is sometimes "big D Deaf" and sometimes she’s "little D deaf".

I can easily identify with her because I’m totally blind in many environments and then in other situations I have a vague visual sense of my surroundings and I never know from moment to moment what will happen.

My hard of hearing friend who is sometimes one or two kinds of deaf is adept at using American Sign Language and sometimes she uses "real time captioning" or special hearing aids.

One thing she never uses is the telephone.

If people leave messages on her office phone she doesn’t know it. She has a message that says "don’t leave a message because I can’t hear" but people do it anyway.

I got to wondering this morning if these people who leave my friend messages on the answering machine are the same people who put the Braille on drive up bank machines?

I suppose they’re also the same people who say, when I ask for directions, "over there" and point.

And these people water their lawns, even in the rain.

I can sort of understand how people who want to give me directions will say, out of habit, "over there" and point with habituation. This is an ingrained habit.

But who leaves a voice message on an answering machine when the greeting says, "I can’t hear so please send me an e-mail"?

Do they say things like: "Oh, can’t hear me huh?  Well good, let me tell you where I stashed the keys to my husband’s Jaguar now that I’m leaving him.  They’re under an industrial wheat threshing machine just north of Ottumwa."

Or maybe they say: "I’m the Empress Alexandra and I’ve been living for 70 years inside a replica of an 18th century British warship, eating hardtack in a scullery closet."

I don’t know.

I do know that leaving a voice mail message for someone who has identified herself as big or little d deaf is like sewing seed after the Romans have marched through your country.

It’s like painting a battleship with a jeweler’s brush.

It’s like the thing I do when I walk into a room and talk to empty space because I don’t know that the person I’m looking for has left.  I just talk.  And when I figure out that there’s no one there I say, "And don’t you forget it."

But at least I can claim ignorance.

Leaving a voice message for someone who tells you the enterprise is pointless is totally weird.

I’d say the act is "passive aggressive" but it’s too stupid to be passive aggression.  The act is "sub-Cartesian" by which I mean:" If I don’t think, maybe I don’t really exist."

"Nuff said?

S.K.

One of the worst things that can happen to a writer, especially if she or he is associated with a college or university, is the possibility that the writer in question–(hereafter known as the WIQ) will start to believe that credentials and a beefy CV are intrinsically significant beyond the narrow walls of higher education.

Some of America’s best writers never went to college and they were no worse the wear for that. Later on, those same uneducated poets found themselves teaching at colleges, largely because there have always been a few progressive professors of English throughout the ages who implicitly realized that having Robert Frost or Kenneth Rexroth on the faculty was a shrewd move.

Still, though I am a writer who teaches, I love Kenneth Rexroth’s characterization of the university as "a fog factory". (Rexroth taught at the University of California at Santa Barbara but he meant "the university at large").

My dad was a college president and he used to say that higher education is hamstrung by its fidelity to what he liked to call "late medieval deviance" by which he meant that colleges are the direct descendents of monasteries which were in part constructed because of primogeniture–that is, there weren’t enough farms to go around so plenty a late medieval boy had to go to the monastery since he couldn’t find a niche anyplace else.

My dad was a funny man. He had private nicknames for the quarrelsome faculty members that he had to listen to over and over again in what must surely have been nearly unendurable faculty meetings. I remember that one professor in particular (who never supported any initiative as far as is known) earned the title: "the singing capon".

WIQ are all too often impressed by their academic rankings, titles, affiliations, publishing bibliographies, not to mention the conferences they’ve attended and the fellowships and awards they’ve received.

I fear that far too many of them fail to get out of the fog factory long enough to experience or endure the actual lives of their fellow citizens.

I was talking last night with my friend Gary who met his wife Lorraine in Manhattan while they were both volunteering in a Catholic soup kitchen.

I seldom see American writers in my rounds visiting non-profit organizations that provide relief for disabled citizens.

A few years ago I tried to convince some academic writers that it would be a fine thing to develop a summer writing program for teenagers who have disabilities much like the programs for teens offered by organizations like the Dodge Poetry Festival.

The look of horror on the WIQ’sfaces was palpable even to a blind writer with a speck of something like seeing.

But I can tell you without hesitation that the best thing I ever heard in a poetry class was a poem by a blind and deaf teen from Ethiopia who worked with a laptop that had a refreshable Braille display and in turn had a human translator by his side.

He wrote a true "out of the body" lyric that involved riding the spines of other animals.

I think it’s really really good to get out of the "fog factory"  once in awhile.

S.K.

Always there is someone who will tell you to get in line. In the American idiom "get in line" means to adopt the prevailing point of view. We also like to say: "get in step" and by contrast, when referring to someone who doesn’t reflect the majority’s conventional wisdom–"he’s out of step with America."

I’ve always found this dross of Americana hard to square with the revolutionary independence of mind that is best signified by the phrase: "Don’t Tread on Me."

As I grow older I sense that there’s a terrible problem within the disability advocacy community.

In the field of Disability Studies we call this problem the "defective people industry" and what this means is that there are venerable organizations and points of view both public and private that depend on the status quo. This phenomenon can take many shapes:

Continue reading “Down on the Farm”

"It’s so elegant, so intelligent" the disability rag and have I mentioned that its relentless? People who don’t have a disability tend to imagine that people with disabilities receive accommodations and then their lives go smoothly. Sometimes even those of us who are veteran disabled people allow ourselves to imagine this.

But "the disability rag" (hereafter referred to as the DR) is capricious like a boy’s unconscious. One moment you are using your fancy shmantzy talking computer and the next moment and without warning your computer has busted a transducer and not only that, but your white cane has snapped and you can’t find your cell phone. This is the DR.

In general the DR always happens when I’m having one of those ill advised moments of optimism because things are working so well. By God, my wonderful talking computer is making my work day into a form of temporal nobility. I feel almost classically adept at my negotiations. What an amazing world! I’m "working it" like those sighted people. It’s going so well.

DR.

The guide dog gets sick. The taxi doesn’t come. You miss an important meeting. The wings fall off. DR

Sometimes the unforeseen obstacle isn’t technical at all. It can be a human problem. I was once invited to appear on "The Oprah Winfrey Show" and as I was getting ready to board the plane to Chicago the airline announced that the flight was canceled. But there was no problem they assured us because they had a bus lined up to take us to an airport about 45 minutes away and they had rebooked all our tickets on a flight that would leave from there. Okay.

As I was attempting to board the bus with my guide dog, the driver, a surly fellow indeed, told me with far too much passion that I couldn’t get on the bus with the dog.

DR.

It didn’t matter that it was a guide dog. It didn’t matter that state and federal law guaranteed us the right to get on the bus. This driver couldn’t have cared less. He was unmovable.

My wife went and found a policeman. The policeman, who was around 14 years old didn’t know a thing about the Americans with Disabilities Act or the so-called "white cane laws" that guarantee access to public transportation by blind people with certified guide dogs. He sort of shrugged.

DR.

And while the driver and the cop were discussing their respective cluelessness I simply got on the bus.

(Once you’re "on the bus" they will have to forcibly remove you. I figured this would look bad in court if things ever went that far.)

The driver got on the bus. He was silent. He drove to LaGuardia airport in New York.

After about twenty five minutes he said: "I’ve got a disability."

DR.

It turned out he was a Viet Nam veteran.

He said he was sorry.

He told me about the shrapnel in his legs.

I told him that disability rights in the United States have been secured with the passage of the Americans with Disabilities Act and that the Viet Nam veterans played a major role in pushing for the legislation.

DR.

This Disability Rag contains circles within circles. And they’ll roll over you when you least expect it.

S.K.

It’s Labor Day which to many people with disabilities has a meaning all it’s own, as was mentioned in this post.

Join Kara and friends as they "Protest Pity" and examine each other’s reactions to the annual Jerry Lewis MDA Telethon.  Kara writes:

"Welcome to the first annual Anti-Telethon Blogswarm (online gathering
of bloggers to bring attention to an important issue). By stopping by,
you’ve joined our protest against pity."

Cross-posted on [with]tv

So I went to the local health club and had a long swim and then I went and sat in the sauna.  A woman there asked me if I "could see anything at all" and when I said "colors and shapes" then she just went on and on.  "Can you tell that I’m female?" "Do you see my shape?"

Godfrey Daniel!  I wanted this woman to shut up.  I was wrapped in my own private endorphin Eden and I didn’t need this miscreant to ask me about my blindness and for God’s Sake I thought she was going to grab my hand and put it to her face and say: "Can you tell what I look like?"

So because she wouldn’t stop talking I just got up and walked out.  It was easy.

She probably thought: "What a miracle, the blind man walking away, all by himself."

People with disabilities seldom get a break.  Some days you just feel like Hester with the scarlet "A" on your chest.

Shut up!  You!  You Out There!  Read a book about eye disease.  And do it in the privacy of your own home or apartment.  Promise yourself that you won’t spoil other people’s hard earned moments of bliss.

Of course the real problem in this sauna was that it wasn’t the authentic Finnish variety.  In Finland if there’s a jerk in the sauna you just throw more water on the stones and drive the fool away with hot steam.

This was one of those pale imitation American saunas which is just a hot little room without the all important bucket of water and ladle.

I think from now on when people do this intrusive "do you know what I look like" thing, I’m going to say, "Yeah, you look just like Sponge Bob."

SK

The following text comes from a blog I just discovered: Miss Crip Chick’s Weblog…thanks to a recent comment from Kara:

"Jerry Lewis is the host of the Muscular Dystrophy Association’s Annual
Telethon, a telethon that occurs every Labor Day to raise funds for
cures by using disabled people as posterchildren. Disabled people
protest the telethon because of its outdated, negative portrayal of
disabilities. These images that the telethon promotes sticks in
people’s minds and continually serve as a barrier for disabled people.
Disability is not the problem, but rather the attitudes and barriers
that society places on us."

"What can we do? Protest. Write a Letter to the Editor. Tell people
about the charity, medical, and social model of disability. Blog. Kara
and I, along with the Disability Activist Collective (website coming
soon) are organizing a campaign against the telethon and the charity
model of disability. We need bloggers (not only
disability bloggers but all! feminist, queer, woc, environmentalist,
activists, great time to build alliances) who will agree to write about
this! The campaign will work much like a blog carnival and will be
heavily publicized in listservs and other sources of media. We
encourage you to participate! To participate, please a comment or email
us a consciouslycrip@gmail.com
We will be announcing the campaign on Thursday via media and will tell
them to check the website postings on Monday. The campaign will be
posted on Kara’s site."

Visit this link for more information, including "A template letter the Disability Activist Collective wrote for you to use…"