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When have you surprised others by rising above the low expectations they had for you?
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Name: T.B. Morse
Email: tbmorse@juno.com
Date: 16 Mar 1999
Time: 17:03:05
Remote Name: ppp-011.unm.edu
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A long time ago, when I started telling my story about my dealings with Social Security Disability, I was naive enough to believe that people just didn't "know." If Americans only knew how this system - designed to help the weakest among us - was malfunctioning, there'd be outrage. There'd be change.
Now, after years of writing and speaking out, I see a different truth. I see that the Conservative's appeal to "special interests" has worked spectacularly well, and among those of us who should know better. The black movement had a name for it: "Uncle Tom."
How many "disability activists" have I approached, asking that they include, in their discussions, those of us who are rendered unable to work for a living by our "disabilities?" How often, and how reasonably, have I made the point that we cannot all be exactly the same. My husband, a polio survivor, has been coping with physical disability since he was four. The odds he's beaten to be within nine weeks of graduating with his MBA are amazing. From a Hispanic community, his mother still reminds him that they were told he had two weeks to live, that they should take him home to die because all the iron lungs were full. He spent half his childhood in California hospitals having sixteen surgeries so he could walk on crutches. If he has spent a lifetime working, who cannot?
I'll tell you who cannot. People who haven't had the "advantage" of getting sick or injured young. If you want to be loved as you are and have always been, if you want to be accepted as you are no matter how "different" you seem, then why can't you understand that everyone feels the same way? People who have always been healthy and "normal" and "strong" can't just bounce up and be "beautiful" when disaster strikes them. Even those of us who fall ill or are injured in their 20's may not be able to recover. I think so often of my husband's friend Steve, a rodeo rider, who became a paraplegic in his 20's and committed suicide last year in his 40's. Why did he live so long and then find himself unable to live anymore? Could it have had something to do with the deterioration we all face as we age, the chronic infections that sapped his strength, or was it his conviction that he would not be able to drag himself into H & R Block for one more season of doing taxes, that he would, finally, find himself in others' care?
"But he had land that was valuable," my husband says, not comprehending the despair that comes when you realize that the last thing you own in this world will have to go, and then what? Where would Steve live when his land was gone, and his pride, and his income?
Those of you in the disability community who have triumphed over awe inspiring obstacles now must triumph over one more human failing, the belief that anything you can do is nothing special. I see it in my husband all the time. He's brilliant, he's skilled, he's deep, but he can't understand why everyone isn't just like him.
If he can write a perfect memo in ten minutes, why can't his college educated and perfectly healthy twenty-five year old female assistant? If he can quickly understand the concepts being taught in his MBA program, how can young, strong, allegedly "smart" people be struggling?
It's time for you to admit that you ARE special, as special as you'd like to be. Each of you who's survived against overwhelming odds had some special gift: intelligence, drive, money, connections, skills, abilities, even luck. That's the good news. The bad news is that everyone doesn't have those advantages, any more than everyone has the physical or emotional problems you have coped with.
For those of us who don't, being held up to your standard of performance is more than unfair, it's Uncle Tom-ing. It's being used, by people who don't have our welfare in mind, against people who have as much right to a life as any of us. I think of it this way: we all hear "Yuppies" going on and on, in the media, about how much they've "deserved" all the rewards society has given them, because they've worked so hard. When I hear that, I think about the people I've met who worked themselves into the grave, but never got a single reward they "deserved."
We cannot all be you, any more than we can all be Christopher Reeve or Einstein or even, with all his flaws, President Clinton. So we need you to be more.
We need you to admit how GOOD you are, and to expand your voice to include those of us who find ourselves failing, who grieve for our past selves and want to be cured, but who most of all want our lives even if we're less perfect than we were.
It's not that we hate you because we've joined you. It's that we CAN'T fully join you. Life hasn't given us enough time.
I write these words as an activist without a forum, without the slightest recognition in life, because the group I advocate for is more than invisible...it's refused. It's denied.
No "disability activist" will admit that there are people out there who are too ill or too injured to work. They're afraid that if they do so, they'll lose the leverage they need to try to open up the workplace. So, they've joined ranks with the larger society, that wants to save money where it can.
The group that finds itself closed out may seem small, but it potentially includes every one of us, you no less than any other. In fact, if you already have coped with disability, it includes you more, because - like all of us - you will age. If you find yourself fading, don't kid yourself. Your years of accomplishment will not protect you from the process of public humiliation Social Security will subject you to, and it's not Dr. Kevorkian you have to fear. You may not be "dead yet," but if the government continues to hold on to the right to starve you and deny you medical care, death will be a real possibility.
I ask all of you out there in the disability community to add the concerns of people who have to apply for disability benefits to your agenda. I ask each of you to be big enough to care about the people who can't cope, who can't survive without our support. If you aren't hearing from them, could it be that you're unconsciously sending them the message "don't talk to me? I made it. If I can, ANYONE can."
I don't send out that message, so I hear from them. Just this morning, I got a heartbreaking e-mail from a woman with multiple progressing physical and emotional conditions who's been turned down by Social Security consistently for a period of three years. She sounded on the verge of suicide. She wanted my help.
She wanted my help, but all I could offer her was speculative advice, because I have no voice in the disability community. I'm a crackpot who insists on talking about things that don't exist. There are no people dying in America who need disability benefits to live. The one "review" I got of my book said it wasn't a good disability resource because it didn't talk about the Americans With Disabilities Act. The reviewer was misled by my title, in which I use the old-style legal meaning of "disabled" to mean those whose impairments render them unsuitable to work.
Our language in America today doesn't even allow me to define the group I'm willing to speak up for. It seems so insignificant that I am chastised for devoting an entire BOOK to such a negative subject in these "with disabilities" positive times. I tell my husband's story and I find myself rewarded, welcomed to the table of "with disabilities" discussion. But when I tell the story of more than a million Americans A YEAR who apply for disability benefits, I'm barely tolerated as a loud-mouthed strident fool.
I call upon you to open your hearts and your minds to the injustice that continues to haunt those of us who find we CAN'T "do it all" forever. Only then will the disabled - those who can and those who can't work - truly have rights and recognition in America. If you "forget" the least of these in the name of what you believe is best for "most of us," haven't you become just like the people you've spent your lives fighting? I'm only one tired woman with multiple sclerosis. Alone, my voice is weak. I can't do it by myself. Still, it's my intention to refuse to take "no" for an answer, and to keep on yelling, even if I can only whisper. As long as people write me and ask for my help, I'm going to talk about this problem. If you don't like it, then maybe you haven't "succeeded" in life as much as you think.
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