You might be wondering why I wrote these pages. Here are some questions and comments, directed to me by people over the years, and my answers.
I'm hearing-impaired, extremely nearsighted and have ADD, all "invisible disabilities" and all reason enough for me to write this.
WARNING: I'm rather blunt when
provoked, and this page proves it! There are some very
personal observations and opinions that most wouldn't expect in an
informational web page; this is as much an essay as anything, the
product of over 30 (now 40) years of frustration. You have been
warned.
Your comments are
welcomed.
I'm writing this page to recognize, and help people with "invisible disabilities, people who've been ignored and sometimes even shunned by traditional disability organizations and society at large.
Not necessarily. Your neighbor may have an invisible disability without your even realizing it. These are just some of the disablities that are invisible:
I am thankful for everything I get to accomplish. But perhaps I'm naive enough to think that feeling guilt over the "person over there with the wheelchair" (My mom was herself confined after a car accident) won't help that person, nor myself.
At some point, I (and others in my position) have to look out for my own needs, and they happen to be considerable at this point in my life. I don't like saying this, but that's how it is. Guilt over the wheelchair doesn't change anything.
Hooray! I'm happy for you. If you can go out there and do things, great! But everybody's different. About your wheelchair: How was it provided? Do you have health insurance? Transportation? How do you pay for your personal care attendants? What would happen if you were downsized tomorrow? One never knows.
I'd suspect you're getting a lot of help and assistance, and that's great. Would you begrudge this help for others? And I also suspect you're asking for more help yourself. You'd have my immediate sympathies if the person asking this question were more forthright and less self-righteous.
As it happens, I'm more than willing to work and "do things", as the rest of my web site demonstrates. I just need some help, kindness and consideration for me to contribute as I should, as I want to do.
That's an old, old, stereotype, intended to sugar-coat the truth. The only special talent I have is stubborness, and that's the only reason I've gotten this far in my life.
I'll grant you adversity has toughened me. Being teased in school, constantly without end. Being yelled at by teachers. Having my mom end up in a wheelchair. Seeing my foster sister, die over 6 years, of an Alzheimer's-like genetic disease, while I was in college. Seeing my mom get colon cancer and diabetes and having to help care for her until she died three years afterwards. Being out of work for five years and never working in my field of computer science.
Yes. All of these things have made me tougher. But better? No. They've only exacerbated my problems. My "adversity" has made me withdrawn, cynical, suspicious, bitter and even nasty at times. (I don't often flame, but when I've done so, it's pretty bad.)
People who truly suffer hard times and remember them clearly and not with the hazy recollections of the "Good Old Days" are the last people who would wish it upon their own. I have two young nephews and I will be damned if I'm going to inflict this argument on them.
About hard work: It's become fashionable for politicians and commentators to extol the virtues of Hard Work, recalling the Good Old Days of the 1950's (or even the 1930's) as a time when Americans Didn't Complain and Got Things Done.
Any farmer can tell you that is garbage. There's many a farmer who worked hard to get his crop planted out there in the fields for harvest, but had it ruined by a drought, or six feet of water on the fields. Mother Nature doesn't care one way or another about hard work. Mother Nature does, however, like smart work, or else we'd still be in candlelight, and we'd all be working the fields ourselves!
I can work real hard without my glasses, to see the blackboard or the computer screen. Will you take away my glasses, then, since they just make it "easier"? Or my hearing aids? I've worked damned hard to hear people without them, but I'll bet you be the first to complain when I can't hear you!
My paraplegic neighbor needs a respirator to breathe. I guess he's lazy, since breathing with atrophied, weak muscles builds character, right?
This hurts the most. Several examples:
Once, I was placed, as part of my therapy, in a mental-health clubhouse where I edited the house newsletter and really liked the work. After I was there awhile, I worked with the members and staff on redesigning the newsletter, and got the support of just about everyone.
After the redesign, things were good until one of my authors walked in. She had made many submissions to the old newsletter, done in her style, which unfortunately I could not use in the new newsletter. I'd explained this to everyone involved and got their assent.
Except for this lady. She told me: "You don't understand me. I have a disablity. You don't understand. You're NORMAL!" I was quite disheartened and demoralized. That week's newsletter went out as scheduled, but I made immediate plans to train my replacement, and left the clubhouse two months later. I won't go back there, even though I've met old friends who've begged me to return.
Sadly, this is not isolated. I've heard these sentiments among advocates on Usenet. A few years ago, on bitnet.deaf-l, a Deaf mailing list/gatewayed newsgroup, a hearing-impaired poster complained of his isolation from society, a very common problem among the hearing-impaired. He suggested that perhaps the problems of the hearing-impaired were different in some ways than those of the deaf.
The response: "Go learn sign [ASL] and stop whining!" This is the same group that bitterly denounces oralism (lip reading, oral education) and cochlear implants as fascism, and calls the non-deaf "hearies". Let me understand this: I am socially isolated. And I am to train, at great effort and expense, to learn a language in which its speakers will bitterly denounce me and refuse me contact just because of who I am, knowing damned well I can't help what hearing I have or don't have?
In the last years of her life, my mom started losing her hearing, so that she required a hearing aid. She then told me, through tears, that she finally knew what it was like for me all my life.
Was I to tell her, "Mom, you're late-hearing-impaired! I've been hearing-impaired all my life! You don't understand!". No. I hugged her. Then I resolved to help her in any way I could. I told her about experiences with my own hearing loss. I got books from the library on hearing and we read them together. My mom was the only disabled person I ever knew who didn't lecture me or tell me how I couldn't understand. She was a proud foster mom who cared for over 400 children, including myself, and she wanted nothing else but to be known as Jeannette Moisan. Not a "disabled" person. Not an "elderly" person. Just Jeannette.
It's been two years since she died and I still miss her bitterly. Instead of her wisdom, I get loneliness and bitter tribalism over the Net.
Why is it not possible for disablity-rights groups to understand this?
In the seven years that this web site has existed, I've often been asked if some condition qualified as an invisible disability.
Please understand that I am not the gatekeeper of your condition. A disability is simply a condition that interferes with a major life activity such as working, shopping or taking care of oneself. If you have such a condition and this condition is not visible to other laypeople, then rest assured you do have an invisible disability. Whatever else I may say on it has no bearing.
The same things most people want: Understanding, acceptance,
patience. But also my amplified phone, my flashing-phone ringer, my
hearing aids, my 17" monitor and my pocket organizer. And the
wisdom to respect differences.
Most of these things don't require money. Perhaps that's why
they're so hard to come by.
Dave Moisan