Electric EDGE
Web Edition of
The Ragged Edge
July/August 1997

Electric Edge

Boy and girl on beach

By Megan Jones

It has happened too often. Usually it's the second time I encounter someone, when we are mere acquaintances yet. Apparently at that critical point in our relationship they feel they simply have to ask,

Boy on beach "So, how bad is your vision and hearing anyway? I mean, you seem to get around pretty good as far as I can tell. And you hear me just fine. Your voice is not, well, deaf."

Girl on beach What I would like to say at this point is, "Yeah, I see and hear better than the bionic woman. All of this hype about being legally blind and hearing impaired and needing assistive listening devices, readers and discount transport tickets is just a way of pulling the wool over the eyes of hardworking taxpayers and inciting pity from others. Isn't that brilliant? Ha, ha, ha. And furthermore, when the tongue can hear well enough to be deaf, that will be a fine day indeed."

However, for a long time I felt obligated to be honest: ''Well, you see, actually I don't see very well. I am blind in one eye, from an accident when I was three, and have very thin cornea in the other -- you know, the very outer part of the eyeball -- and my cornea has split several times and I just don't have any stamina for reading and I'm very nearsighted, you know; I can't see signs or any kind of detail that is not close to my face and actually I'm quite hard of hearing now but I used to hear better and amplification helps me a lot and, um, do you know much about sound frequencies ..."

Obviously I felt some need to explain myself. I had to prove to the inquiring busybody that I was indeed an authentic crip:

Two women "The real thing, folks! You won't believe it until you see it! A real live deaf-blind person! Watch her move about with ease! Watch her carry on an intelligent conversation . . . . "

But here I am speaking untruths. The reality is that people don't want to see me do things. They want to see me fall on my face.

Let's move away from sarcasm for a moment to address this serious issue. Why, after I have spent my life developing strategies to cope with my vision and hearing loss so that I could plow through 22 years of school at last count (including nursery school), countless social events, and miles of public transportation, should I feel that I need to be disabled in order to go about my business?

I am currently working on a doctorate in special education. A couple of years ago I asked my university to increase the funding which they provide me with for my research and in-class assistants. My justification for this "special" request was that the combination of being a doctoral student and being "deaf-blind" necessitated the hiring of intelligent human beings to assist me with classroom discussions and research. And, unfortunately, intelligent human beings do not come cheap.

Now, let me assure the world that I understand the financial restraints that many universities are under these days. And this was the issue I was prepared to face. What came as a complete shock to me was the letter that I received which essentially said,

Smiling man "We do not understand what you mean when you refer to yourself as 'deaf-blind.' When you were in the office the other day you seemed to function just fine."

The reality, though, is that I am legally blind and profoundly deaf.

I finally received the funds I'd asked for. However, my so-called victory occurred a year later, after I had exhausted my own means of rational persuasion and had procured letters from my audiologist, my optomologist, the regional representative from the Helen Keller National Center and the Chair of the Special Education Department at another university, all attesting to the fact that am indeed authentically handicapped even though I am a wiz at appearing otherwise.

Shona Hearing dog I recently acquired a beautiful Hearing Dog for the Deaf named Shona. She looks exactly like a German Shepherd only she weighs fifteen pounds and is of some mixed breed that we cannot determine -- German Shepherd and Chihuahua maybe. When Shona is in public she wears an orange jacket with "Hearing Dog for the Deaf" written clearly in black on the side.

When I first started taking Shona out, I would get one of two reactions from shopkeepers, bus drivers and others who dealt with me:

"Oh, what a cute little guide dog puppy! Are you training it?"

"That ain't no guide dog, lady! Get off the premises!"

Woman with cane Dealing with these folks, in addition to the numerous other concerned citizens who just had to pet my dog right now -- while proclaiming, "Good dog, good for you!" became rather exhausting.

So guess what I did? I started using a white cane when I went out with Shona.

I have never really needed to use a white cane except at night. But I find that when I use a cane people leave me alone. Never mind that my "Guide Dog" is pint sized and doesn't even wear a harness -- people go right into their Blind-Person-With-A-Cane-And-Guide-Dog Red Alert mode.

Apparently, I am only legitimately special if I look that way.

I am sure there are people out there who could just kill me because they think I'm griping about not appearing handicapped enough. "For crying out loud!" they're saying. "I'd love it if people would look at me and just see me instead of my chair" or cane or whatever.

Hearing dog That's an entirely different issue.

What I'm saying is that many people are more comfortable relating to me and accommodating me if they can be absolutely certain that I am who I say I am, a deaf-blind person. And they are not absolutely certain that I am that person until I bump into a wall or shape my hands into what is to them an incomprehensible language. In other words, I must make myself completely alien to these people in order for them to feel that they understand me.

Smiling woman Perhaps my experiences are not surprising considering the general attitude toward the "less fortunate" that permeates the country these days. The backlash against affirmative action, welfare and Social Security recipients seems to stem from the mistaken belief that the country is overrun with sneaky ne'er do wells who will take every opportunity to cheat the government (as if the government provides funds to protect these "less fortunate" out of compassion and trust and that somehow the cowering beast has risen above its master).

Woman looking back Government officials, the public, and the media incessantly gripe about all the people who are pretending to need assistance in order to finance their drug habits or send their children to posh private schools or retire to Florida. Or the people who are victimizing hapless entrepreneurs by forcing businesses into bankruptcy just because some crip wants to use the bathroom. Or all the people who are cheating the Division of Motor Vehicles by falsely using "handicapped parking" permits.

Maybe I'm naive. Maybe there are a million people like that out there. But I don't think so. Even if there are thousands of people cheating the pity-patrol, there are thousands more who are cheating on their income taxes (probably the same people who are raising a fuss about welfare).

And although my insightful reflections are all very well, I have not yet really figured out how to address other people's attitudes about my disability. I'm stuck between wanting to stand up and screech, "I'm deaf and blind! Give me your money!" and wanting to just drift through the world pretending that I am someone other than myself.

But I do have a few strategies gleaned from experience.

Woman asking question When people start the "Gee, you don't look handicapped" routine I smile sweetly and say simply, "Well, I am," then ask them if their husband is still in prison for tax evasion or if they've found a cure yet for the gross zits on their back.

I've also decided that I'm not above striding into, for example, the Supplemental Security Income office, tripping over my cane and shrugging my shoulders while pointing haplessly at my ears -- if it gets me what I want without hours of explanation.

Yet I bear in mind that these strategies are just play-acting for a clueless audience. Anybody who cares to understand me any better knows that I am a highly competent person who experiences vision and hearing loss, who strides forward not despite my disabilities but despite other people's ignorance.

Megan Jones is a freelance writer.
She lives in California where she is working on her doctorate.

At last! People are talking about hidden disabilities!"
writes Ragged Edge reader Amanda Hamilton.

Oh the joys of invisibility!

As a learning-disabled grad student at the University of Chicago,(aka an Oxy-moron), let me share my favorite item from the "Well DUH!!!" file:

"Oh! but you're funded to do a Ph.D.--you can't have a learning disability!"

During the five years of guerrilla warfare with the administration at my undergraduate college, there was the Great Golden Classic: "You have a learning disability? You say you are innumerate? You want us to modify our requirements?? I don't believe you are telling the truth! (translation: You don't look disabled; prove it!).

And there's Great Golden Classic #2: "If we modify a requirement for you, it will be unfair to the 20 other students in the class."

Man and woman
We are in a sense forced to
pass, and at the same time
assumed to be liars.
My response to "You don't look disabled" is "Let's substitute: 'You don't look gay' -- or how about 'You don't look Jewish.'" In response to "It would be unfair.....blah blah blah," I am fond of "So, you have a torn knee ligament. Too bad.

But it wouldn't be fair to give you crutches or show you the elevator. Everybody else has to use the stairs."

I am planning to present my thoughts on these beloved chestnuts and the joys of Invisible disabilities to the great and the good at the Association on Higher Education and Disability this summer. Are there other LD grad students out there who are radical and not interested in (still) playing the "Shiny, happy LD-kiddy" role any longer?

I am being specific precisely because of our particular invisibility. We are in a sense forced to pass, and at the same time assumed to be liars--this is the double bind of hidden disabilities like LDs. We "pass" as "normal" students, making sophisticated compensation strategies in order to complete our requirements and research, at which point, when we hit barriers (such as timed tests, irrelevant-for-research language requirements, etc. or funding deadlines that we can't make on schedule) -- sure enough, we aren't disabled enough --thanks to the success of previous compensation efforts.

Another thing: learning disabled people don't magically "outgrow" LD's at the age of 18. That's why we need to agitate for more self-representation and services after school. We don't need to be represented to ourselves by well-meaning, paternalistic special-ed experts. We need people to stop telling us who we are (and are not) and we need them to start listening. For once.

Amanda Hamilton (who is LD and does not have a "Learning Difference") is in the Dept. of South Asian Languages and Civilizations at The University of Chicago. Her E-mail address is ahamilto@midway.uchicago.edu

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