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Once Upon a Week in Washington by Michael Bailey W hen the going gets weird,” Hunter Thompson warned us, “the weird turnprofessional.” Plenty of professional weirdness came to Washington, D.C., in September. Professional developmental disabilities advocates, parents and f unctionaries sor ted through one view of reality while Adapt took its message straight to the people who make decisions. One group was nice, in a weird way, and Adapt was, well, just weird, in a nice way. A s a remi nde r t hat politicians have issues that the “folks back home” care about ot he r is sue s t ha n ours, Cindy Sheehan brought her Camp Casey anti-war juggernaut to Washington at the same time. I attended all three events. I learned the difference between synergy and entropy. And I got a good dose of gonzo-advocacy. The week began for me on Tuesday, September 20, when a cavalcade of 500 members of Adapt and their allies wound its way up Capitol Hill and into the officesof the leaders of the Congress of the United States. Senators Grassley (R – IA), Reid (D-NV) and Frist(D-TN) and Representatives Pelosi (D-CA), Barton (R-TX), Hastert (R-IL) and Delay (R-TX) found themselves confronted by people who had come to deliver a simple demand: “Don’t target low-income and people with disabilities for budget and service cuts.” The offices were finally cleared only after police arrived, ordered people to disperse, and made more than one hundred arrests. The next morning, Roll Call, the in-house newspaper of Congress, was filled with stories about Adapt’s demands for no caps and no block-granting of Medicaid, demands for abandonment of the planned $10 billion Medicaid cut and passage ofMICASSA. Across town many of the same activists reappeared at both the home and the office ofHousing and Urban Development Secretar y Alphonso Jackson to ask for policy changes in HUD’s Section 8 housing regulations. Eventually Jackson emerged from his office, listened to Adapt’s demands, and agreed to take steps to address them. While waiting for Jackson, Adapt received a let te r f rom Democ rat ic Pa r t y C ha ir ma n Howard Dean supporting Adapt’s position on fixing the dysfunctional disability service system. When at last the summit came, it was attended by people from nearly every state. Itcompleted its well-oiled agenda and went home having unanimously endorsed the idea that all people should live in their communities. It might be said that this, too, was good work for just a few days. But beneath the similarities lurk some very fundamental differences that defi ne the future of disability advocacy in America. Those differences raise troubling questions about whose interests are being served — those of people with disabilities, orthose of the organizations purporting to represent them. Two fancy words can help in a comparison of the ideal and the reality of the summit with those of Adapt. The fi rst is synergy: a fusion of different energies into a strong, single force. The other word is entropy: the gradual decline into random nonsensewhen a group is no longer able to cohere. While Adapt got that work accomplished, another group of disability advocates, re-searchers and administrators descended on Washington for the beginning of what was billed as a summit meeting on developmental disabilities. It was called “The Alliance for Full Participation.” More t han t wo t housand people swarmed into t he giant, fashionable Washington Hilton for two days of meetings and trainings. The summit‘s sponsorsw e r e a W h o ’s W h o o f m a i n l i n e d i s a b i l i t yor ga n i z at ion s, i nc lud i ng the American Association o f Me n t a l R e t a r d a t i o n , the Arc of the U.S.A., the National Association of University Centers on Disabilities, the National Association of Councils on Developmental Disabilities, and Self AdvocatesBecoming Empowered. Few of the delegates were aware that the summit was, in large part, an experiment to learn whether these often feuding groups could actually co-exist under the same roof for a few days. The experiment had been endangered before it began by the threatened boycott of the summit by Self Advocates Becoming Empowered. SABE had returned to the planning table only after some personal coaxing, an apology for condescending behavior, and VIP signatures on a written protocol for how SABE members were to be treated. The history of the summit’s sponsoring groups is distinguished. Parents of children with disabilities owe a debt for work that the Arc and others did sixty years ago. The (mostly) mothers who made that happen had neither experience norfunding. They had nothing to lose and that’s how they behaved. Commitment and a simple messageof justice are powerful tools. But once those tools have been used to good effect, they are hard to use again. The early history of disability advocac y was largely a struggle with bureaucracy. Bureaucracy is, by defi nition, a narrow and inwardlooking thing. Bureaucracies havea long and sad history of learning how to perpetuate and reproduce themselves while subordinating and even scoffi ng at their founding ideals of “justice,” “freedom,” and“independence.” Those terms are hard to defi ne, and lack the precisionthat bureaucrats thrive on. Commodore Ja mes E l l iot t commanded the American gunboat“Niagara” on Lake Erie during the War of 1812. He is immortalized by his dying words: “We have met theenemy and they are ours.” Disability agencies and organizations can rearrange that epigram to read, “We have met the enemy and they are us.” Growing organizations have the bad habit of adopting the characteristics of their oppressors. A fearful reality sets in, imperceptible at fi rst. Well-meaning people begin to put the survival and prosperity of the organization ahead of its founding principles. All sorts of compromises can be rationalized when one believes that the world would be worse off without one’s organization. Louis XV said it best: “After me, the deluge.” Public funding of disability advocacy seems like a great idea. It is a great idea. There’s only one problem: there’s no such thing as a free lunch. E very grant, every allotment and every public dollar that comes to advocacy organizations is carefully restricted. Failure to comply with those restrictions — or having another part of the same organization engage in activity deemed insultingor unprofessional by, or dangerous to, the grantingagency — can endanger renewal of the funding. The confl ict between telling the truth and the need to hold on to their money creates that nasty condition, entropy. The two motives are no longer able to cohereand it is most often the money motive that stays and the reckless, glorious idealism that goes. Of course this is never obvious at the time. While talking of the need to “think outside of the box” organizations become so enslaved to theirmoney that no real dialogue is possible. Dissent is censored in two common ways: we must and we can’t. Those rebukes to real discussion are always delivered matter-of-factly, with a sour face and condescending voice, as in “ We must get the strategic plan done fi rst.” Or, “We can’t do civil disobedience — what would our partners in the Department ofHuman Services think?” Self-Determination, like Empowerment, has become one of thosegaseous items that expands to mean what people with power want it to mean. Summit-goers seemed oblivious to the narrow constraints under which they labor. The arcane minutiae of Section 1915 (b) (6) concurrent waivers got the royal treatment while issues like the bankrupt federal treasury, that endless war ofours, global warming, racism, dis-ableism, and the national addiction to for-profi t health care went unmentioned. The argument that these items have no bearing on disability issues only proves my point. If our planet becomes uninhabitable, if bureaucracies become even more racist, if eligibility for Medicaid becomes predicated on such total poverty that you can’t afford bus fare to see your doctor, it will hardly matter that Medicaid made some small concession. T he summit ended with a u n a n i m o u s e n d o r s e m e n t o f community living. There was no condemnation of the states currently impr isoning 1,641 c hild re n —and t hat ’s just c hildren —wit h developmental disabilities in their institutions. 93% of those children live in 20 states. The biggest offender is Iowa, home of Senators Grassleyand Harkin. Federal patronage to disability organizations comes to large extent from those two offi cials.The summit also made no effort to call for an immediate moratorium on new admissions. Self-Determination, like Empowerment, has become one of those gaseous items which expands to mean whatever people with power want it to mean. Notably absent from the summit’s list of presenters was Tom Nerney or other true pioneers of the self-determination movement. This was not a meeting for sweeping new ideas. After the summit, Nerney called it “lost opportunities and a failure to adopt bold strategies.” He also named to this reporter the people who had not been invited to present, which list happensto coincide with the list of individuals and organizations who signed Not Dead Yet’s amicusbrief to the Supreme Court opposing physician assisted suicide. Many delegates seem unaware that true selfdetermination passed away some years ago in favor of the dictates of Medicaid rules. But the conference organizers know it and chose to not alienate “our federal partners” by bringing it up. There was no mass movement from fashionable Dupont Circle to the less affl uent Holiday Inn on C Street where the Adapt action was headquartered. No march in solidarity with MiCassa. Just a pandering to thefi ction that the Bush people share our goals. No one believes that, but everyone opted to not offend. “Wecan’t do that!” The summit was addressed by the wise and charismatic Martin Luther King, III. He was warmly received by an audience anxious to see themselves as spiritual heirs to his father. As I heard him speak, I wondered if I were the only listener thinking that if Martin Luther King, Jr., had operated the Southern Christian Leadership Conference with a federal grant, there would have been no bus boycott, no letters from the Birmingham jail, no march on Washington. There would have been no “I Have a Dream Speech” since all of the dreamers would have been purged. T he delegates to the summit are good people. Most of them want to change the world, and for the better.But working within a publicly-funded structure does, infac t , limit what they can talk about and what they can do. A foggy myopiadescends. A comparison b e t w e e n t h e A d a p t a c t i v i s t s and t he summit delegates could be interesting. One point of comparison might be the question of who paid to get them to Washington. Of the 2,000 delegates to the summit, very few, if any, paid out of their own pockets to attend. Adapt, on the other hand, is made up of some of the poorest people in America. All but a few of its activists paid their own way to DC and shared hotel rooms with as many as eight people to help pay their hotel bills. That requires real sacrifi ce. One wonders how many people would have attended the summit if they’d had to share their hotel rooms with strangers. Ian Kuenzi is 21 years old. He lives in Lawrence, Kansas, and came to Washington with Adapt on his own money. He has been attending actions since he was 15. I askedhim why he made the effort. “Direct action works,” he said. “It is important to my way of life. I am making a difference not just for myself but for others.” Kuenzi was arrested in Senate Majority Leader Frist’s offi ce during the Adapt action. “My fi rst arrest,” he told me, smiling. “The cops asked if I wanted to leave. I told them no.”Was the arrest worth it? “Hell, yes! Wehave the right to free assembly. This brings it right into t he i r space and makes them aware of us.” A delegate to the summit, who would not tell me her name, told me what she thought of Adapt. “Going to jail has never changed anything,” she said. I wonder what she’ d beent h i n k i ng du r i ng Martin Luther King III’s speec h. His father went to jail a lot. Mike Goupil of Topeka, also came to Washington. He is unemployed and hopes to fi nd work repairing wheelchairs. He too was arrested. “That was my tenth Adapt -related arrest,” he told me. “Somebody has to stand up for the rights of people with disabilities.” I asked him why he believes in direct action. “You have to show them you mean business,” he said. Mike, too, was arrested in Senate Majority Leader Frist’s Offi ce. Will the summit “outcomes” succeed? That depends entirely on the largesse of the federal government. Changes in federal law, generous budget allotments and, above all, more and lotsmore Medicaid millions are needed. The summit-goers’ plan is simple. In order to keep getting money, you can’t piss off your “federal partners.” You balance the need for more money, more system reform, against your current income and decide it is best to be patient and “professional.” No point in making enemies. Alienating the administration is the thing they can’t do. Working with Congress is the thing they must do. Anything else will threaten their continued existence. After them, thedeluge, remember? They expect that the House will cut budgets, pass horrible laws andgenerally ravage the human services system. But, not to worry, since there are a few Senators who will actas a moderating influence and do damage control in conference committee. Most of these Senators are Democrats. They are also politicians and one of the oldest mantras of politics is “What have you done for me lately?” People wit h disabilities voted in larger numbers than ever in the last election. The Democrats supported the Help America Vote Act, they nominated a candidate who is a co-sponsor of MiCassa and yet people with disabilities voted strongly for Bush. Why should Senate Democrats continue to help us? T he Bush Administration has been a disaster for all of America. The number of people living in poverty has increased dramatically. Bush has squandered the Clinton budget surplus and plunged the country into debt, debt to the tune of $150,000 per man, woman and child in America. The summit refrained from attacking Bush or the House Republicans. Why? Fear of retaliation adds up to silence. Most of the program budgets that support summit sponsors have been either f lat-funded since Bush came into power, or cut. The summit presented a real opportunity to dosome ser ious political work. But any cr iticism ofthe President would be inappropriate. A fine outcome would have been to have every delegate sig n a pledge to go h ome and do everything in their power to defeat R e p u bl ic a n members of the House of Representatives. No greater service could be done. But no one mentioned such a thing. After all, grants and allotments forbid partisan political work. The summit’s sponsors are proud of having made advocacy a profession. They dress like professionals, strut like professionals, and condemn bad behavior such as the use of four-letter words. I-R-A-Q was one of the forbidden four-letter words. It costs taxpayers more than $1 billion a week to maintain Bush’s war. The summit would like for Bush not to cut $10 billion from Medicaid, they want housing addressed and full Congressional funding for IDEA. Astonishingly, they want this all done without mentioning the Iraq war! “We can’t afford to alienate the administration on a non-disability issue.” Better, apparently, to postpone freedom for another generation than to risk losing money. Hurricane Katrina claimed the lives of a disproportionate number of people with disabilities. Obviously, more and better future planning is needed. But if we do not identify and remedy what is causing the waters of the Gulf of Mexico to warm, no amount of planning and preparation will protect people from future storms of increasing ferocity. Global warming? “It’s not in our grant.” Something is wrong when survival is considered an inappropriate goal. Nothing could be more important than health care reform. Senator Bill Frist (R–TN), a physician, is Majority Leader in the Senate, and was, for a short time, head of the now defunct Senate Disability Subcommittee. Nothing can happen in the Senate without his consent — and this is a man whose family fortune is entirely based on for-profit hospitals, notably Hospital Corporation of America — once successfully targeted by the Department of Justice for Medicaid fraud. As long as Frist has power, there will be no fundamental change. During the summit The Washington Post disclosed that a few days before an unfavorable quarterly earnings statement was due for release, Frist had sold his stock in the family hospital business. Martha Stewart went to jail for less. Although Frist denies any wrongdoing, an investigation is underway into that sale. Here is an opportunity to get rid of Frist and open the possibility of real health care reform. At the disability summit, this could not be seen as a disability issue. One must not make powerful people mad. M eanwhile, across town, another mother had arrived. Her name is Cindy Sheehan. She has no staff, no organization, no grants. What she does have is a simple message, much like the special education mothers had a generation ago. Her message is easy to understand and hard to turn your back on: “Why did my son die in Iraq? I wantthe President to tell me.” I talked with her, and listened to her, on that Friday. I would like to know her better. She is someone with heart and without a hidden agenda. She is not afraid. On Saturday, she led more than 100,000 Americans to the White House to ask Bush for some simple answers. It is she and her friends, not the summit-goers, who are the spiritual heirs to Martin Luther King, Jr. It is risk-takers who inspire and lead. An Adapt activist sat near her. Paralyzed in Vietnam, his life is dedicated to peace. The obvious connection between a sane government and the prosperity of all people is what brought him to Washington. “Adapt kicks ass,” he told me. The summit had the opportunity to call for the defeat of our enemies in Congress and an end to the war. It is hard to imagine that the idea ever crossed their minds. It would have been too controversial, too risky. And that is too bad. Across from Camp Casey, set up by Cindy Sheehan and her friends in honor of her dead child, is the new World War II memorial. On one of its granite pillars these words are inscribed: “They had no rightto win. Yet they did…. Even against the greatest ofodds. There is something in the human spirit – a magical blend of skill, faith and valor – that can lift men from certain defeat to incredible victory.” It was Saturday when the summit participants went home. They had a good time, passed some resolutions and, mostly, didn’t make anyone mad. On Monday Cindy Sheehan went to jail. Like the Adapt activists at the start of that week, shetook her skill, faith, and valor and put it where it mattered most. She had nothing more to lose. Michael Bailey or Portland, Oregon is author of "SPECIAL EDUCATION: A Families Guide to a Child's Success," to be published in April, 2006.
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