One week before I should have become eligible to receive my first disability benefits check, I received a Denial Notice from the Social Security Administration. I was hysterical all that afternoon. How could I be refused?

The five months since my checks from the Methodists ended had been, after the deceptively simple start at the Social Security office, a nightmare of red tape. Form followed form, but I'd complied with every regulation and filled out every piece of paper. What's more, I'd made my doctors do the same.

Dr. Goodman hated to fill out forms. He particularly hated governmental forms because they appeared to be trying to trip him up. He had a tendency to "lose" them on his desk. Dr. Goodman was the first doctor in ten years I'd really liked or trusted. Still, I became more and more aggressive, using the phone, hysterical letters, and office visits to nag him into putting my paperwork first.

Then there was my neurologist, Dr. Nathan. I was glad I'd accepted Dr. Goodman's referral. Dr. Nathan was both scrupulous and conscientious, two qualities I could appreciate after years of "snap" diagnoses and snappier brush-off's. But now I discovered that Dr. Nathan was impatient with the Social Security system. Apparently it required him to repeat the meaning of the simplest clinical signs for each patient he treated, as though descriptions of such illnesses did not exist in textbooks.

He was thorough in writing his reports, spending hours with his comprehensive files. The resulting diagnosis and recommended treatments had to be read by another doctor. But, judging from Social Security's letters, they didn't have one on their staff.

Every few weeks, I got notices that said, "You state that you are disabled by multiple sclerosis, but you have not submitted evidence to support this claim." Attached, I found a release for medical information, authorizing my doctors to file another report.

But I'd made so many "filling out paperwork" visits to Dr. Goodman and Dr. Nathan that both men had begun to make me wait six weeks for an appointment. Both of them told me, more than once, that it was time for me to go home and learn to live with my deficits. But I, who'd spent years looking for doctors I could trust, now jeopardized these relationships by bullying and cajoling them into continually re-examining my case.

As the months dragged by, I knew my disability approval was being delayed. But I'd completed every piece of paper and met every deadline. How could I simply be refused? It took me days of calls to my congressman and connections from my previous jobs before I learned the truth. Refusal was the standard procedure.

Very few disability cases were settled without a hearing before an administrative law judge. Since that hearing was defined as an "appeal," they let you know they wanted to see you in person by denying your claim. When it did come to a hearing, the use of a lawyer was strongly recommended. Disability law was a specialized and highly complex field.

Once again, John and I went looking for referrals. We were told a Mr. Gianelli was one of the most successful disability lawyers in New York. Soon John and I sat in Mr. Gianelli's waiting room. We weren't the only ones.

Among the other clients, there was a thin, weather-beaten man on crutches. His face was lined with pain. Because of a back injury, he couldn't bear to sit, or even to stand still. As we waited together for half an hour, he moved himself in circles, a little at a time, around the room. His soft moaning seemed an accompaniment to the minutes ticking by. As we waited, I asked myself, if this man had been forced to hire a lawyer to win his benefits, what kind of chance was I going to have?

When Mr. Gianelli - a cynical-looking dark-haired young man with a gigantic diamond ring on his pinkie - finally appeared to escort us into his expensively furnished office, I no longer had the slightest idea of "hiring" him to represent me. I understood I should be grateful if he agreed to take my case.

In two more months, bills for hundreds of dollars in report fees began to come in. Mr. Gianelli was very thorough. He'd written every one of the eighteen doctors I'd seen in the last eight years, and each of the hospitals I'd had contact with. He even went back to a walk-in hepatitis test at St. Vincent's in 1971. Now doctors who'd mistreated or misdiagnosed me were charging $50 to $75 to write negative reports and send them to the judge. Only Dr. Nathan's and Dr. Goodman's reports were free.

Eventually, I also received a notice that I had an appointment to discuss my claim with a disability doctor. Through Mr. Gianelli, I now knew the facts of life about the Social Security disability system. The criteria for judging my eligibility would not be the extent of my illness, but how successfully I lived my life around it. When I'd walked into the Social Security office to fill out my first form, I was already doing too well. There was a real possibility this doctor would challenge my diagnosis, but I didn't know what I could do about it. I could only memorize and repeat back to him the details of my history.

My appointment was in an office building in the Wall Street area. I was waiting in a small bare room off the reception area when a young man in a white coat came in. "I'm Dr. Frank," he said. "Take your clothes off and put this sheet on."

"But," I said, "I wasn't told I was having an examination."

"Well, dear," he said breezily, "you are."

I sat half-naked on the examination table through our half-hour together, nervously answering Dr. Frank's questions. I knew I was being disgustingly cooperative, but I couldn't seem to help myself I'd left my dignity sitting in the broom closet with my clothes.

Dr. Frank was cheerful as he tapped my knees or ran through new variations of the finger-to-nose test. He even tried a trick of pressing down suddenly on the top of my head to see if I felt a tingling sensation. This was, he confided, a new indication of multiple sclerosis.

Later, at home, I took a hot shower, but his clinical touch remained on my skin as if he'd raped me. Over the years, I'd learned to endure strange doctors touching me because I knew they were trying to help me. But now I'd accepted the touch of a doctor who might well be trying to hurt me. I was overwhelmed by self-disgust, convinced that I'd failed both John and myself. But what could I do?

I had ten more months to ask myself that question, and many others. Ten more months as the bills mounted up, and John was forced to pass up a prestigious year in training that came with a $3,000 stipend, in favor of a much less desirable placement that paid $10,000 for the year. Five of those months were wasted in an intermediate step, an appeals process called a "reconsideration." Until I got a letter informing me that this appeal had been denied, we couldn't request a hearing before a judge.

John did his thesis work at the library now. I sat in our apartment, wondering if I really had multiple sclerosis, accusing myself of causing our financial ruin because I was too lazy to go to work. Days I kept the curtains pulled and sat in the dark. Nights, John and I stared at the TV. Our social life was nil, except for an occasional evening of backgammon with Jimmy (who had, for the present, lost interest in chess) or family gatherings/student parties, at which I obsessively discussed the facts of my case with anyone who'd listen.

Not too surprisingly, friends and acquaintances slipped away. Most of the people I knew I'd met at work. It would have been hard to keep in touch with them, even if I was at my best. But I wasn't. I was at my worst.

For months, I sat at home with my thoughts, or ran around crazily trying to fulfill the government's expectations by destroying the medical relationships it had taken me years to build. Like the starving ice fisherman who cuts off his little finger for bait, every day revealed some new piece of hope or life or dignity that I had to discard in order to survive.

Others found it difficult to understand my state of controlled fury and desperation. One day I looked around and there was Jimmy, the only friend I had left.

I'd been avoiding Jimmy for a long time, trying to get rid of him. But every few days he called to see how I was doing, and after a while I gave in. I'd chat with him for a few minutes, or listen to him work out backgammon probabilities over the phone.

I liked Jimmy, but he could talk for hours if you let him. When I was a busy and productive person, I had no time for him. I turned him over to John, although I'd been the first to meet Jimmy.

I was having a cup of coffee in Nancy's apartment, two days after we moved in, and she introduced me to him. She said Jimmy was doing some carpentry work for her. Before she knew it, he was also giving her chess lessons. Nancy confided to me that she wasn't all that interested in chess. But, there was something about Jimmy that made it difficult to turn him down. I couldn't think what Nancy saw in this blonde apparition. Dressed in leather and denim, he slouched over her kitchen table, darting glances at me from the corners of his eyes. There was something compelling about him, but I thought he looked scary, until he smiled.

When John hired Jimmy as his chess teacher, both of us found it amusing. There they sat, week after week. John in his three-piece suit, his polished black shoes, his newly narrowed tie, his salon-styled hair, casually being beaten, game after game, by this twenty-year-old punk-looking genius who could play blindfolded, because he "saw" the position in his head.

We both thought Jimmy was crazy as hell. But he was funny, and we liked him. When I met him in Nancy's kitchen, he'd said that he occasionally took odd jobs. John and I immediately hired him to help us finish painting the apartment. But John was busy, and finally it was just Jimmy and I. We worked together over a weekend, and I found out more about him. As different as we were on the surface, we had one thing in common. His childhood had been as troubled as mine.

Of course the details were different, and he'd taken a different path. Self-taught, he'd never gotten his high school diploma. He earned his living from odd jobs and playing speed chess for $5 a game. He discovered his talent for chess by accident when he was ten years old, and had studied it seriously since. He thought he might have been a world-class player had his life been different. As it was, he played slightly below a masters level, but kept himself unrated for two reasons. He liked to gamble on his games, and he didn't care for tournament play.

When he told me about his life, those days we worked together, I was drawn to Jimmy. I accepted him as a fringe member of my "social circle," those people I had fun with when there was time, worried about sometimes, even mothered a little. But when my life went very wrong, and I sat in my apartment with the blinds closed, Jimmy was just the friend who wouldn't go away. Not because I cared about him, or even thought about him when he wasn't under my nose, but because he seemed to care about me. And that was good. Because during those days when I was convinced I no longer had a "real" life ahead of me, I was completely unable to care about myself.

In January 1979, the word on everyone's lips was "inflation." The specifics of President Carter's soon-to-be-unveiled "austerity budget" were a hot topic in the news. America's New Year's resolution was to pay attention to how much things cost. The White House was under pressure to come up with a plan that would yield quick results.

Shut out of the "real" world, I kept a general knowledge of current events by reading my area's "popular" paper, the New York Daily News. Unfortunately, I read it selectively. Locked in a real-life struggle with a governmental bureaucracy, I was likely to skim over the reports from Capitol Hill and go right to the advice column or my horoscope. Depressed and broke, financial news meant little to me. Thus I missed the debate over the Social Security tax increase which took effect January 1.

Apparently, the increases were large, large enough for workers to feel the pinch. Reporter Frank Jackman said,in a January 5th piece "Urge freeze on Soc Sec deductions," that United Auto Workers' President Douglas Frasier described the increased Social Security taxes - in testimony before a Congressional committee on Social Security - as "an undue burden on the low-wage earner." Frasier pointed out that other nations used general revenues to pay for "pensions and other benefits." Thus he called on Congress to freeze Social Security taxes at "the 1980 level."

Frasier's ideas weren't new. There'd been debates about how to pay for Social Security for as long as there'd been a Social Security. But Social Security taxes were so much a part of the American consciousness by now that it hadn't been truly "controversial" for some time. Now, all that was changing. On January 6 the News devoted an editorial to the issue of Social Security taxes, under the lead line "Ouch! That hurt."

As the editorial argued, "the new gouge" had indeed "stimulated discussion of ways to lessen Social Security's impact." However, the News came down hard on Frasier's proposal to simply fund Social Security from general revenue.

Stating that "a government running a $40 billion deficit doesn't have money for more handouts," it was the editor's opinion that "raiding" general funds "would only encourage Congress to boost payments for political gain." A better solution? Gradually raise the retirement age, include federal employees in the system, and most importantly phase out some benefits. This "sounder approach" would keep America from "turning Social Security into a vast welfare scheme."

Phasing out benefits was certainly a popular idea, and one that President Carter himself supported. On January 10, James Weighart reported, in his article "It's back to bread and butter for Carter," that Carter's "austerity budget" proposal entailed "reductions in domestic spending." Weighart noted that "the bulk of the reduction Carter is proposing would impinge on programs that are at the core of his party's traditional philosophy." Programs that included "Social Security benefits." But it fell to Bruce Drake, in his article "Congress, Carter go at it again" on January 14, to spell these reductions out. "Look for a drive also to roll back the increases in Social Security taxes that take effect this year. At the same time, Carter will again provoke a battle by pushing for Social Security reform that would mean reduced benefits for some, particularly in the area of disability payments."

Of course. If Social Security was suddenly "too expensive," only three basic options remained: bite the bullet, fund the program from general revenue, or cut back benefits. Biting the bullet was an unpopular idea. Funding Social Security from general revenue was politically unfeasible. That left benefit reduction. But, if you were talking about "cutting," your choices were limited.

Touching the "old age" benefits would be political suicide. That left disability benefits. Other expenses were already targeted in Carter's proposed "austerity budget." These "extras" made up such a small percentage of Social Security's budget that every one of them could be disposed of without much impact on the average paycheck.

Disability benefits were another story. Providing conscionable care for the disabled was an increasingly expensive business, one fact Carter must respond to. Thus far, his response was on the side of cutting. News reporter Jack Anderson outlined potential cuts on January 24, in his article "Short-changing the handicapped." It seemed that President Carter's aides had just helped gut the amendment to the Rehabilitation Act of 1973. This amendment would have provided "independent living services" for the blind and severely handicapped.

In this, President Carter was a man of his time. There was a growing feeling among the general population that certain "social services" were simply too expensive. And many politicians were already pointing out that the recipients of Social Security disability not only got monthly checks but were, after the elderly, the largest consumers of Medicare, another Social Security fund.

"Experts" were saying that many disabled people were actually capable of working, and only needed strong "incentives" to get them "off the rolls." Unfortunately, this idea - which was rapidly gaining popular acceptance - was dead wrong, as any thinking person could readily discern.

The problem, again, lay in the area of definitions. Although most politicians used the words "handicapped" and "disabled" interchangeably, government regulations acknowledged an important distinction between the two. Handicapped people were those who had a limitation that made working more difficult. Members of this group had been very outspoken about their desire for fair work opportunities and access to jobs and transportation.

In my view, they were right. Why should a man with a missing arm or a woman in a wheelchair because she was born with spina bifida be denied fair work opportunities? Why waste their talents and our tax dollars because some employer didn't want to special-fit a machine or build a wheelchair ramp?

But the "disabled" as a class, were - by governmental definition - those who could not work unless unreasonable adjustments were made on their behalf. Special-fitting a machine is not going to increase the productivity of a woman with Down's syndrome. A wheelchair ramp won't improve a schizophrenic's social skills. Yet it was this very group the government was speaking of applying "incentives" to.

Clearly, "incentives" alone wouldn't be enough to get "disabled" people "back to work." To do that, the government would have to invest a large sum to create jobs which could be performed by even the most disabled American. But that made no economic sense. You would quickly reach a point where it cost more to try to keep people with certain kinds of disabilities working than to subsidize them. That was the entire point of disability insurance. And clearly, the government wasn't talking about investing money to get the disabled back on the job. It was talking about saving money by getting the disabled off disability insurance payments.

Without such an investment, it was clear that the disabled could not just go back to work. Not even if the strongest incentives - cutting their benefits down to zero - were applied. One look at the unemployment figures would tell you that throwing the disabled into the job market was not likely to achieve a desirable result.

Unless, of course, a substantial proportion of the "disabled" weren't actually disabled at all. Then forcing them into the job market would be a good thing. The people who did it would be prudent instead of cruel. This, too, was becoming a popular idea.

Here and there, articles and editorials had begun to appear on this theme. There was the January 5 Daily News editorial "The disability dodge." It focused on an obvious case of abuse, a firefighter who continued to collect a disability pension after recovering his health enough "to win a race up the steps of the Empire State building."

I didn't read this editorial. If I had, the author would have gotten no argument from me. I'd have certainly agreed with the statement that no one "capable of working should be collecting disability payments."

It would never have occurred to me to ask who would decide which people were "capable of working," or what standards would be used. A thinking person might have asked these questions, but I wasn't a thinking person yet.

I skipped the editorial page on January 5th. I didn't have to consider what it meant when the words "disability" and "dodge" came together in a popular newspaper at a time when the public was feeling that the government was spending too much money.

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