On May 11, 1983, at 1:44 in the afternoon, my lawyer and I entered Administrative Law Judge Jones's courtroom. Judge Jones, a short balding man, looked absurd in his long black robes - but I wasn't laughing. He had the power of life and death over me.

For two hours I sat in his courtroom answering questions. When it was over, I was exhausted and could remember little, except for the conviction that my predictions and fantasies had all come true. Two long years later, I received a transcript of that hearing and sat silently for a morning, drinking coffee and reading it over.

The transcript was almost 25 typed pages. Twenty-five pages of questions about who I lived with, the age of my children, how I traveled to the hearing. Questions about my college degrees, my work experience, my symptoms, and even my weight.

I saw from the transcript that I was tiring and must have been slurring my speech. Some of my answers were garbled by the court reporter. Thus, the statement that I "just loved" lying around on the single bed mattress while my kids watched TV.

Reading the transcript over, I thought "I treated the judge with too much respect. I should have acted the way that Jimmy threatened to." But no, I was myself and would submit to the questions that were insulting or intrusive, as well as to those that were pointless, irrelevant, illegal.

Sitting: how much sitting can you do?

Are you able to lift and carry things? Light things like files, newspapers, things like that?

Do you read during the day? Do you read the papers every day?

Do you make the beds? Do you go shopping? Do you take walks at all? Do you have friends that you visit? Do you go to restaurants, go out to eat?

I watched as a close friend and then Jimmy's father Dan endured the same routine on my behalf. I saw how ashamed it made them, how they felt dirty and disgusted as the judge got my friend to admit she had once seen me rinse out a coffee cup. So much humiliation, and all for nothing. On one of the very last pages of the transcript, the judge made Social Security's position crystal clear.

"I'd like you to bear one thing in mind," he said to my lawyer, "and I think we ought to mention this now. I've read your brief and there's one fatal flaw in the reasoning. That's with respect to the regulations. You keep talking about medical improvement. That's not the issue. The regulations say that cessation cases are new cases, and that I make a new sequential evaluation as to whether or not the claimant can perform substantial gainful activity. A cessation case is treated as a new case. There's no issue of medical improvement. Now maybe the courts have talked about things like that, but I'm bound by the regulations, and that's the way I decide cases. I don't even care about the prior determination. I don't look at the prior determination, so that's the fatal flaw in your brief."

Of course, Ms. Stein knew - anyone who read the papers knew - that recent court decisions required Social Security to show a medical improvement in seeking to terminate a client's benefits. She argued her entire case around that point. But, as Judge Jones had just informed her, without hope of success. Because the Social Security Administration had issued regulations which ignored or defied these legal rulings.

Social Security instructed the judge to start my case from scratch, to consider it brand-new. But I was not at scratch. I was years down the road from scratch. I hadn't thought to ask my Methodist supervisor to testify again but, even if I had, a refusal seemed likely in light of my recent experiences with the church. The attacks and hospitalizations I went through as a result of trying to work were ancient history. I was left with the details of my life today.

To the judge, I was a woman without a history. He didn't have to consider medical improvement. He didn't have to accept medical evidence without the corroborating testimony of an expert witness. And he didn't have to focus on multiple sclerosis. The regulations said he could concern himself with basics. Could I sit?

"My God," I remember thinking as I answered that question, "what's left? What kind of trouble am I getting myself into if I testify that I can sit? I'm sitting now!"

Leaving the courtroom, I felt I was a liar. My vision did blur, but not every minute of every single day. How much could I read? In the morning? In the afternoon? How far had I gone to try to win> How much of my self-respect had I discarded? All of it, and to no purpose. Under the present regulations, I couldn't win.

Now I had to go home to my animal-filled apartment - to Jimmy and my children - knowing I'd failed, yet desperately hoping I was wrong. I had to sit and wait out a decision I could already write myself.

Yes, home to Jimmy, who wouldn't come to help me or to share my shame. Jimmy, who sent his father in his stead to answer those disgusting questions about my daily activities, as if he were a spy. Did anyone really imagine I invited people over to my apartment to watch me scrubbing the kitchen floor?

Three weeks after my hearing, I read in the newspaper that the Reagan administration had agreed to "liberalize" the rules for Social Security disability, in an effort to head off proposed legislation. Perhaps new guidelines were now being given to the Administrative Law Judges, but I knew it was too late for me. After all those agonizing months of waiting, my case had come to a hearing weeks too soon.

In the days and weeks following my hearing, the newspapers were full of disability news. Not all of it was good. On the legal front, Harrison Rainie of the New York Daily News reported "Court OK's tighter disability rules" on May 17. The Supreme Court had "upheld federal rules that allow the government to throw persons off Social Security disability rolls if they are capable of doing some work." This ruling was "a major victory for the Reagan administration because it sanctioned guidelines...that have been used in a sweeping purge of such disability cases since 1981."

While the Supreme Court's rationale was clear - that overturning these guidelines "would require a review of the huge number of cases and 'hinder needlessly an already overburdened agency'" - I was unable to agree with the decision. I knew how the "work guidelines" were being applied.

Many jobs theoretically "exist in the national economy" - nuclear physicist, talk show host, famous author, scuba diving instructor, chess champion. If you ignored their qualifications and concentrated only on which limbs and muscles were required - say, to pick up a chess piece and move it - then almost nobody was actually disabled.

Thus, a fifty-year-old paraplegic in a wheelchair was found to be not disabled because she could still use her hands. In theory, one might develop a rebuttal to E=MC Squared while living in an iron lung, but how many people was the system prepared to sacrifice in the name of keeping that kind of option open?

The Times answered that question at the end of May. It ran editorial about a disability-review suicide, entitled "Work or Die." The dead woman, Katherine McKinstry, had "worked for 20 years as a waitress until, at the age of 53, she began to suffer from arthritis, spinal disease and severe depression."

In December of 1981 she shot herself in the head, leaving a suicide note addressed "not to a resented or beloved relative, but to the Federal Department of Health and Human Services." Mrs. McKinstry couldn't live with the despair created by "the Government's gross mismanagement of the Social Security Disability program." "Work or Die" also cited the death of a "49-year-old Illinois man" who "wrote to his wife that 'Social Security keeps turning me down,' and then shot himself."

"Work or Die" commented that - despite the suicides - "Federal bureaucrats are only grudgingly altering their procedures and guidelines." I wasn't sure that was true. I hadn't seen any alterations, grudging or not.

As I read "Work or Die" in the stairwell of my building, sitting next to the pile of newspapers I'd retrieved, tears streamed down my face. Mrs. McKinstry, it seemed, "told her lawyers that she would not face a hearing." Having just faced one myself, I knew she was right. At least she kept her humanity. She died with some dignity. The note she left behind said simply, "The message that I'm getting is either work or die."

I wished I felt that optimistic. The message I thought I was getting was even darker.

I believed, in my deepest heart, that the government knew perfectly well I couldn't work. The actual message was, "You're not useful to us, and so we're going to get rid of you."

Wasn't that really what the "man on the street" was thinking? "It's costing us too much to have you alive, just die!" If not, why didn't more people stand up and say, "Enough!"

Were Americans really naive enough to believe the Reagan administration's doubletalk? The bought-and-paid-for unexplained statistics, the flat denials of things that could easily be proven to be true?

Well, perhaps they were naive. Wasn't I, before it happened to me?

So there was no one to blame - no one to meet face to face to scream out my rage and misery as I waited for the hearing decision I knew could not be good.

Social Security finally made a mistake at the end of May, 1983.P>

The News reported its story, "Hero losing his benefits," on May 28, 1983. By June 3 made virtually every newspaper in the country. Ex-Green Beret Roy Benavidez, "a Vietnam war Medal of Honor winner," had just gotten a termination notice. He went to the press.

President Reagan personally gave Benavidez his Medal of Honor in 1981 for action at Loc Ninh. Benavidez saved the lives of "at least eight other Green Berets." Now, when the Benavidez story broke, Reagan and his advisers were caught off guard. A Reagan spokesman could only comment that the administration was seeking "aid" for Benavidez from "Houston businesses."

Undoubtedly, Benavidez preferred the insurance benefits he qualified for to charitable "aid" from strangers. And when a Medal of Honor winner complained, people listened. Overnight, Roy Benavidez's termination stood symbolically for all the others.

As the Los Angeles Times put it on June 3, "So Much For Heroes." In less than a week, the Social Security Administration announced a package of disability "reforms." On June 7, Robert Pear reported, in the Times, that "U.S. Plans To Ease Disability Criteria In Social Security."

Pear's article was - once again - front page news. It had a subheading that stated "Aide Says Administration Will 'Capitulate' to Criticism of Stricter Benefit Policy." But it was not time to go dancing in the streets. Maybe the "Reagan Administration" did have "plans to liberalize the criteria for paying Social Security disability benefits," but these "liberalized" plans were not entirely the "capitulation" described. True, Social Security "would restore some of the policies that prevailed before President Reagan took office," but "the rules would still be stricter than in the Carter Administration."

Still, there was no doubt that the proposed changes - if enacted - would significantly impact disabled peoples lives. But,the periodic reviews would continue. As the Reagan Administration was fond of pointing out, they were mandated in the 1980 law.

Using that law, the Social Security Administration "terminated disability benefits for more than 350,000 people" since March of 1981. Many of these people had dependents, so the benefits saved were more significant than that. Thus Pear reported that, although "the government pays monthly cash benefits to 3.9 million people...that number is down from a high of 4.9 million in 1978."

The Administration was proud of its money-saving efforts. But now, "after reading reports that her department had stopped benefit payments for Roy P. Benavidez," White House officials were said to have "directed" Margaret Heckler - the Secretary of Health and Human Services - to "correct" some "problems." However, critics "reacted with skepticism to preliminary reports." Pear noted that "the changes...are apparently designed to head off even more sweeping legislative changes proposed by Senator John Heinz, Republican of Pennsylvania, and others."

"U.S. To Ease Social Security Criteria..." now discussed some of the proposals. "People with 'functional disorders,' such as paranoid schizophrenia, would be exempted from the periodic eligibility reviews required." And, "the definition of 'permanent disability' would be expanded." Mrs. Heckler was also said to be in favor of the idea that "disability benefits could not be cut off unless the beneficiary's medical condition had improved or there was some change in medical technology allowing the person to overcome his handicap and return to work."

This would be a crucial change, if it went through. And there was more, including "plans to adopt a more flexible standard for determining whether a person has a severe enough disability to qualify for benefits." At present, the government used extremely narrow standards to define the phrase "severe impairment," standards like those utilized in the "she can use her hands" case. And, "if an individual's impairment is not considered severe, the claim must be denied."

Officials also reported that Social Security "would revive its medical criteria...and would try to improve its standards for assessing 'residual functional capacity.'" In my recent hearing my lawyer pointed out that my "Assessment of Residual Functional Capacity" had been made by a clerk in New York State's Social Security office. This man who had no medical training and had never seen me face to face. "Improving" this procedure was clearly a good idea.

Another improvement, the review process would be "more nearly random." Since 1981, Social Security had used "profiles designed to identify the beneficiaries least likely to be disabled." Or, as critics contended, most likely to cost the government money. Critics had noted, "these profiles picked out an abnormally large number of people with mental disabilities." From my own experience, they also appeared to "pick out" a disproportionate number of people under the age of fifty, or people with dependents, or both.

Also, although critics claimed that Social Security had been "improperly putting pressure on administrative law judges to reject disability claims," Social Security now implied that the increased rejection rate indicated a misinterpretation of the rules. Therefore, Social Security would "conduct more training courses for disability examiners and others who adjudicate claims."

So what was the bad news? Well, "the steps to be taken...stop short of a moratorium on reviews for all mental disability cases." Periodic reviews would continue for groups like the "mentally retarded." And I noted that the announcement of these changes, which was characterized by Eileen P. Sweeney - a lawyer with the National Senior Citizens Law Center - as "an effort to assure that Heinz's bill doesn't pass this week," included no mention of those people whose reviews were already in progress.

The issue, of course, was money, as a related June 8Wall Street Journal article made clear. Projected savings from the disability reviews were now a part of Social Security's "budget." No matter how many concessions it made for the future, the Social Security Administration wasn't about to give those savings up. The Journal article, "Disability-Review Program Eased Again By Reagan to Retain More Beneficiaries," correctly called the proposed changes a "significant departure from the hard line." But, the way in which it expressed the impact of these revisions differed radically from the Times article.

The Journal was a a businessman's newspaper. As such, it was primarily interested in facts and figures. Thus, "Disability-Review Program Eased..." reported everything in terms of numbers. The "relaxed" rules included "increasing by 200,000 the number of individuals permanently exempted from the disability reviews. The change will mean exemptions for 37% of the 2.7 million people currently on disability rolls."

The present criteria for exemption was also expressed in numerical terms. "Currently exemptions are granted to people with severe disabilities, such as the loss of two limbs." Perhaps that was why retarded people weren't exempted from continuous reviews. There was no number to quantify what they had "lost."

The new improved standards, the Journal went on, would provide "temporary review exemptions for about two-thirds of the disability recipients with mental impairments." This "temporary measure would affect about 13,000 additional beneficiaries." But all these reductions were having budgetary consequences.

As "Disability-Review Program Eased..." explained, the 1980 review law was a response to "a General Accounting Office audit" which estimated "that as many as one in every five beneficiaries actually was ineligible for payments." Never a newspaper to question too closely the process by which statistical estimates were achieved, the Journal now went on to explain the government's present problem.

Congress acted. "Concerned by burgeoning disability costs - currently $18 billion annually," the Reagan administration resolved to "exploit the congressional directive to the fullest." Thus far, the department had "selected some 800,000 cases for review." And "in 45% of these cases, the initial decision was to stop payment."

But appeals "cut the termination rate to 37%, or some 285,000 cases." Then a change in the initial review rules - which previously barred "face to face interviews with beneficiaries at the initial review stage" - further cut the rejection figure, "exempting 3% to 5% of cases from further action."

This meant expected savings from the disability budget had dwindled. Mrs. Heckler was quoted as saying "the latest round of disability changes would reduce savings expected from the disability reviews by $200 million to $300 million over the next three fiscal years." And, the Journal noted, "The reduction is equal to one third to one half of the total savings previously estimated."

The business-oriented reporters at the Wall Street Journal understood the position the government now found itself in. Governmental budgets were pre-estimated and pre-planned well in advance. How would Social Security's already accounted for budget absorb an additional $200 million to $300 million over the next three fiscal years?

Clearly, it would be easier to "liberalize" the rules for the future than to make such "liberalization" retroactive. Future budgets could be altered to take the "human factor" into account. But Margaret Heckler was going to have to justify every "extra" dollar now "added" to budgets that had already been accepted.

Seasoned Journal readers understood that the "bad" news in "Disability-Review Program Eased..." was the continuing effort to reduce Social Security's savings even more. But Sen. John Heinz insisted "the department hasn't gone far enough." He wanted "a medical standard" restored, "for deciding whether a person is disabled." Such a standard, "which was scrapped in 1980, would favor beneficiaries." And then, there were the hearings, scheduled for today by the "Senate Subcommittee on Oversight of Government Management." These hearings were a response to charges "by certain administrative law judges that the department has pressured them to rule against disability claimants." These law-judges were "seeking a federal court injunction against the department."

I doubted that Judge Jones was a party to this suit. If - as I suspected - he planned to "cooperate" with Social Security, my troubles were just beginning. As the months dragged on, there was no media mention of those of us who were caught in the first wave of disability reviews. Any good politician knows you have to pick your fights. The most immediate fight was halting the review process altogether. Unfortunately, this meant that those of us already caught up in the review machinery were unlikely to get the happy news that the government had "capitulated" any time soon.

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