Column from August 7, 1999
The Award Acceptance Speech I Didn't Get to Deliver
Copyright 1999 by Laura Hershey
If I had gotten the chance to speak to President Bill Clinton before, during, or after he presented me with the polished crystal obelisk inscribed "President's Award," here is what would I have said:
"Thank you, Mr. President, for this token of recognition for the work that not just I, but many activists, have done in a desperate attempt to save our community from enslavement to the Social Security Administration.
"But then again, I don't even know if you realize that that's why Julie Reiskin nominated me for this award! She and I have worked together in Colorado, organizing people with disabilities who had once thought they could achieve their dreams of working, earning a little income. These folks had heard about something called the PASS, which stands for Plan to Achieve Self-Support. This program was created by Congress in the early 1970s, in an attempt to enable people with disabilities to work toward an employment goal. Under the rules of the program, a Supplemental Security Income (SSI) recipient is allowed to receive some income without jeopardizing her SSI and the Medicaid that goes with it -- as long as that income is set aside to pay for work-related expenses, such as college tuition, computer equipment, tools, a vehicle, or any other legitimate costs. When implemented correctly, the PASS program effectively addresses two of the major barriers which prevent disabled people from working: the high costs often involved in becoming employed; and the fear of losing essential health care benefits, especially Medicaid.
"The problem is, this program is not implemented correctly. The Social Security Administration has completely botched the PASS program. Actually, it's worse than that. In this case, SSA's mismanagement is not solely the result of incompetence -- although, to be sure, incompetence has played a key role. I would go so far as to say that SSA has sabotaged the PASS program. SSA is an agency of the Executive Branch, administered largely by your political appointees -- people like Commissioner Kenneth Apfel; and his Associate Commissioner, former disability-rights advocate Susan Daniels.
"If they were doing their jobs, these political appointees would be working to ensure that people with disabilities can pursue every available opportunity to become employed. They would be promoting the PASS program policy zealously, and holding all SSA employees accountable for administering the program as it was meant to be administered.
"Instead, these SSA officials have adopted and/or allowed numerous written policies, standard procedures, and informal practices which combined to ensure that few people could genuinely benefit from the PASS program. For example, SSA employees are prone to issue negative decisions regarding the feasibility of a person's occupational goals, or regarding the legitimacy of the work-related expenses which, too often, are guided not by any rational standards of judgment, but by assumptions and stereotypes. ("I wouldn't want a blind person working on my car,"said a regional SSA official several years ago, ruling on an appeal by an auto mechanic with a visual impairment. Sometimes SSA employees are more adept at concealing their own personal prejudices, but these clearly influence decisions far too frequently.)
Adding another obstacle to PASS participants' achievements, SSA often imposes onerous and unreasonable reporting requirements, with no clear standards of evaluation, burdensome requirements, arbitrary deadlines, and inappropriate questions.
"One of SSA's favorite tricks is declaring a PASS participant "out of compliance"-- i.e., accusing her of failing to follow either her own plan, or SSA rules, or both -- after previously determining the same participant to be in compliance for the very same time period in question.
"As a direct result of these and other actions by SSA, many aspiring workers had their dreams shattered, their opportunities blocked, their already limited resources further depleted, and their health jeopardized. These were the people who started the PASS Participants' Rights Campaign.
"Over the past couple of years, members of the PASS Participants' Rights Campaign have held over a dozen protests in SSA's local and regional offices. You, and/or members of your staff, may have gotten wind of some of these actions. If so, you have done nothing to rein in SSA, nor to lend your support to our protests. You have not used your executive power to mandate SSA's compliance with PASS rules, or to insist on respect for disabled recipients. Neither has Tony Coehlo, the chair of the President's Committee on Employment of People with Disabilities, the organization which sponsored my award.
"Mr. President, I will return this
elegant award, and all the honor that goes with it, right here and now if, in
its place, you will respond more directly to the advocacy which earned it.
Instead of bestowing this accolade on me, shake up the Social Security
Administration from top to bottom. Forget, for the moment, the proposed
work-incentive legislation currently struggling through the congressional
quagmire. Force SSA to unblock current programs such as PASS. Do not allow one
more disabled PASS participant to be forced into failure by SSA."
Photo by John Hershey
Some people have asked me for a more personal report on my White House visit. How can I describe it? There's something strangely jarring, even disconcerting, about being in such close proximity to the single most powerful person on the entire planet-- someone who has, and uses, the power to improve or worsen conditions for millions of Americans on public assistance programs, or to annihilate Serb civilians. (In fact, much of his speech at our ceremony concerned that day's status of the U.S. bombing campaign in Kosovo. As he spoke of this, I sat near him on the stage, trying hard to maintain a neutral facial expression.)
I had originally hoped (naively, no doubt) that we award winners might be asked to say a few words. Then I might put all this excessive attention to good use, by delivering the speech above. Alas, this notion had already been squelched by my contact at the President's Committee who, I swear to god, told me on the phone that I should plan to "just smile and look pleasant."
That's basically what I did. I wore a nice suit, and my dressiest pair of moccasins. (What, they were expecting heels?) In the Blue Room, I waited patiently beside my partner, my parents, and my brother, in a large circle, as first President's Committee chair Tony Coehlo, then Labor Secretary Alexis Herman, and finally the President himself made the rounds. Each gripped my still, pliable hand for a brief hello. I tolerated, without comment, the muzakified medley of Disney tunes played during this reception by an ensemble of red-and-gold-uniformed military musicians.
Then I managed to wheel into the East Room, part of a somewhat awkward little group that included myself, the other two award winners, the ceremony's keynote speaker, and the prez. I didn't exactly march in perfect rhythmic step with "Hail to the Chief," but I didn't run over anybody's toes either. Though it hadn't been part of the rehearsal, Mr. Clinton had arranged to serve as sighted guide to the keynote speaker, a blind woman. He took obvious pleasure in this opportunity for chivalry.
I departed from the group just long enough to go up a side ramp, and then I took my place on the stage.
I discreetly took stock of who was in the room. My family occupied a group of seats about four rows back. My mother beamed, drinking in every detail. My father looked sentimental. My brother took dozens of photos. My partner was on her best behavior; her most radical act was sporting nail polish (unprecedented for her), each finger a different color, creating a mini-rainbow statement of gay pride.
Looking around, I saw many of Washington's disability policy movers and shakers - Becky Ogle, Michael Williams, Justin Dart, etc. I saw the pack of well-equipped journalists filling the back of the room. The room was at capacity, with about 100 people in attendance.
After Clinton's Kosovo remarks, he went on to make a pretty decent speech about people with disabilities' potential contributions to the economy, and about the governmental policies which thwart those contributions. Saying that "no American should have to choose between going to work and paying the medical bills," he endorsed the Work Incentives Improvements Act (WIIA). This drew applause from the audience; many members have lobbied for this legislation. His avowal of support probably did give the bill a much-needed boost; it has since passed the Senate, and is now awaiting House approval of the Senate version. I hope it passes, but I don't think it will be as liberating as it's been described by Clinton and by some disability leaders. In fact, outside of Washington, the disability community is quite divided on WIIA. As often happens, the process of getting it through Congress left it riddled with compromises, much to the disappointment of people who hoped to see more sweeping change.
The presentation of the awards came last. First, Joyce Bender was recognized for starting a program in Pittsburgh which hires and equips disabled people with advanced computer skills. They work on long-term temporary assignments for high-tech corporations; often the workers end up being hired by those corporations. It's not a typical temp agency. The employees receive full-time permanent salaries and full benefits, so it offers them a real career. I had talked with Joyce earlier, outside the White House gate, as we waited to be cleared for entry. She briefly explained her philosophy to me: Right from the start, she said, her company had been a for-profit enterprise. She hated the idea of workers with disabilities being "served" by not-for-profit agencies; she thought this implied that we need charity, when in fact these workers can be a valuable asset to employers.
Next, the President honored James Click, Jr., a car salesman from Tucson whose project, Linkages, encourages Arizona businesses to hire people with disabilities.
I came last. As with the others, the President started with a little speech about me. (Not too bad, overall. I'm always relieved when they leave out the word "inspirational.") Then, remembering the instructions he'd received during rehearsal, he placed the award on my wheelchair tray rather than holding it out for me to take (which would have been momentarily awkward). The award, a sort of mini-obelisk made of solid, heavy crystal, is transparent. My wheelchair tray, made of sturdy clear plastic, is also transparent. As he set down the award, he joked about the similarity in their appearance. "Hey, that looks pretty good there," he said. "You ought to keep it there all the time!" What a card.
One of the interesting moments of the day came after the ceremony, when an assistant to Susan Daniels approached me. She may have been one of the few people there, besides me, who fully understood the irony of the situation.
"See what you get for beating up on Social Security for two years?" she asked with a smile on her face and an edge in her voice. "You get a presidential award!"
All I can say is, I hope the award won't be the only result of my "beating up on Social Security for two years." I hope that soon the public, the U.S. Congress, the President's Committee on Employment of People with Disabilities and, yes, the President himself will notice that SSA is wasting money and ruining lives by holding disabled people captive to its bureaucratic abuses of power. I hope that the disability-rights community will unite to demand that political appointees at SSA be fired, and replaced by others who are committed to giving disabled people real opportunities to work without penalty -- and that President Clinton will finally listen, and act.