In early October, I traveled to Washington D.C. to take part in several meetings about the complex relationships among disability, employment, and Social Security benefits. Lately, I find myself visiting our nation's capital two or three times a year. Such frequent visits seem to be the unavoidable fate of people deeply involved in the disability-rights movement -- or in any movement for social change, for that matter. Washington is where The Power is. If you want to influence public policy, chances are you will need or want to go to D.C.

Washington seems to be exerting an even more powerful pull on activists than usual this fall. Several major events are focusing our energy there. The conference I attended, "Barriers to Bridges," involved over 300 people in discussions about the barriers to employment, and how those barriers could be attacked in order to increase job opportunities for people with disabilities. Less than a week later (I wish I could have stayed!), hundreds of education and inclusion advocates gathered for a "Rally to End Special Segregation" at the Ellipse in Washington. And this coming week, October 31-November 4, the capital will be invaded by members of ADAPT -- American Disabled for Attendant Programs Today -- who will demonstrate in favor of a national system of attendant services, which could free thousands of our people from nursing homes.

My recent visit was relatively brief -- only four days -- but I managed to pack in a lot of activity! and not just attending conference sessions. Travel is best when it provides both vivid impressions and experiential lessons. I came home from this trip with more than my usual quota of both. I thought I would share a few of them with you, my Crip Commentary readers. (I believe I have more than one column's worth of comments this time; so plan to check back next week to read the rest.)

* * * *

On Sunday, October 4, my one free day before the meetings began, I spent an entire afternoon wandering around the city. The weather was damp and cool, but not too cold to enjoy cruising along the Mall, where I watched joggers, tourists, students and dog-walkers, all and each doing their thing. I visited several of the Smithsonian museums. In the Museum of American History, I spent an hour learning about the horrors of sweatshops -- factories where low-paid, unprotected workers crank out clothing and other products, under conditions of brutal exploitation. Sweatshops played an economically significant, but socially and humanly destructive, role in the industrial history of the United States.

As I toured this exhibit, I couldn't help thinking about the topic of the upcoming conference -- employment of people with disabilities. I know that millions of disabled people are languishing in unemployment. But hundreds of thousands of others spend their days laboring in sheltered workshops, where they are paid sub-minimum wage. Their behavior is strictly monitored, and they are not allowed to unionize. Like sweatshop employees, people in sheltered workshops have little or no hope of career advancement, or of earning enough to buy a home. In both settings, discontented workers rarely speak out, because they fear retaliation.

I left the museum with numerous questions haunting my thoughts: Is there any real difference between sweatshops and sheltered workshops? When will historians and economists probe the causes and effects of sheltered workshops? Will the exploitation of disabled workers ever be the subject of a major exhibit at the Smithsonian? Will sheltered workshops ever attract the kind of negative publicity and moral outrage finally being directed against sweatshops?

* * * *

On Monday, October 5, I was invited to a so-called "advocates' meeting," convened by Susan Daniels, Associate Commissioner of the Social Security Administration (SSA). The meeting title was a misnomer, not because advocates were absent -- in fact, some of our most effective advocates were there -- but because the meeting really wasn't ours. It was designed to serve SSA's agenda, and SSA staff had carefully outlined the meeting's purpose: To strategize about different scenarios for future advocacy efforts, depending on whether Congress passed or defeated S.1858, the Work Incentive Improvement Act. This bill (which died a week later) attempted to increase access to Medicare and/or Medicaid for people with disabilities who become employed.

The 20 or so invited guests sat around a long table, eating boxed lunches and dutifully answering the questions put before us. I finally felt compelled to add some discord to this artificially positive conversation. I affirmed my support for S.1858. But I also said that on one level, it really didn't matter whether the bill passed or not. If it didn't pass, I said, we still have in effect some very powerful work incentive programs -- especially the Plan to Achieve Self-Support, or PASS -- which could be benefiting many more people than the current ?? And if S.1858 did pass, I added, the Social Security Administration would probably screw it up, just as it has screwed up the PASS program. I gave some examples of some of SSA's most recent actions -- such as a decision by an administrative law judge in Colorado, ruling that because the claimant was disabled, no employment goal could be considered feasible for him! I pointed out that Susan Daniels' office is now in charge of the PASS program, but that we had seen no improvements in the program's administration as a result of her leadership.

Other advocates at the table joined in criticizing SSA's implementation of PASS. Bryon MacDonald, a strong and committed organizer around work incentive issues, presented a detailed example of a practice that has become common at SSA -- re-writing program guidelines unilaterally, without following the usual administrative procedures involved in developing regulations. This is one way that SSA has effectively gutted the PASS program.

Bryon and I, and several others around the table, argued that our number one benefits advocacy priority should now be demanding accountability from SSA. The officials running SSA programs should be made to answer to our elected representatives. They should have to explain why they altered the PASS program in contradiction to the intent of the legislation that created it; why they have arbitrarily and prematurely terminated so many PASS plans, destroying people's dreams of pursuing careers; why they continue to allow SSA field workers to give inaccurate information or no information; and why they still tolerate staff who believe that people with disabilities cannot or should not work toward become employed.

If our leading advocacy organizations are serious about increasing job opportunities for people with disabilities, here's how they should focus their lobbying efforts in the next congressional session: Demand that Congress hold hearings on SSA's abuse of disabled Americans. I want to turn on C-SPAN one day next spring, and find SSA's top officials squirming nervously in front of a panel of irate Representatives. After weeks of intense grilling, I want a congressional subcommittee to mandate some real changes, like requiring SSA to follow its own rules, and to stop making up new ones as they go along.

Then, once we've gotten current programs back on track, we can talk about creating new and better programs.

* * * *

The next day, Tuesday, October 6, several of us decided to have our own "advocates' meeting" -- no SSA officials invited. About a dozen people gathered at a nearby office. Some had been at the SSA-sponsored meeting the day before; some hadn't even been invited. We talked for several hours. Many of us expressed anger and frustration at SSA's continuing resistance to all our reform efforts.

We were a pretty diverse group, and we disagreed on many things. But in the end, a large majority of us agreed that, one way or another, we need to build a national movement to demand political and program accountability from SSA.

After my early-October "pilgrimage to Washington," I returned home with a great deal to think about. The District of Columbia is something like a large-scale version of that funny little man who controls the Wizard of Oz: From one city (and several suburbs, like Baltimore), people punch buttons, pull strings, and push papers -- and thereby run this big, complicated nation.

I know that's an overstatement: Other locations, like Wall Street and Hollywood, exert at least as much influence -- or more -- over U.S. business, culture, and even public policy. But Washington's power politics and behemoth bureaucracies certainly play a major role in directing the national drama.

Since the focus of my "pilgrimage" was on disability, employment, and Social Security, those subjects monopolized my thoughts during and after the trip. Below are a few of these thoughts. Some are conclusions; some merely questions.

* * * *

President Clinton, and other politicians from both major parties, have made saving Social Security a top priority. Discussions of this issue are already taking place, and more are planned, throughout the government, media, and academia. Topics include: the solvency of the trust fund; use of the current budget surplus to shore up the fund; and proposals for investing and/or privatizing Social Security funds. And throughout all of these discussions, one affected group has been, up to now, almost completely excluded. That group, of course, is people with disabilities.

Any decisions emerging from these discussions will certainly have a significant impact on people with disabilities who received either Social Security Disability Income (SSDI) or Supplemental Security Income (SSI) -- which is most of us. In fact, I would argue that the impact on our community will be disproportionately high; for whereas the average retiree depends on Social Security benefits for only fifteen years or so, many people with lifelong disabilities will need their benefits for decades. Therefore, we have more at stake. Any action which reduces available benefits will jeopardize the survival of millions of people with disabilities. Yet we are not being consulted!

I think we have a lot to contribute to this dialogue. People in our community have some outstanding ideas and insights that could help to improve the benefits system -- ideas about enabling more recipients to engage in some type of employment, to increase their own self-sufficiency and quality of life; and insights about why current "return-to-work" programs aren't working. Our solutions, if fully implemented, could save the trust fund billions of dollars over the next quarter-century or so. Yet we are not being consulted!

Whenever the president or anyone else convenes a discussion on the future of Social Security, people with disabilities should demand a prominent place at the table. We can't afford not to be participants in those crucial conversations.

* * * *

Meanwhile, there are increasing threats to other federally-funded disability programs. I became acutely aware of this during several conversations with disability advocates who spend a great deal of their time on Capitol Hill. I've long been aware that some Americans believe that their taxes should not be used to provide ongoing support to people with disabilities, when this money could be serving some higher purpose -- like buying weapons of mass destruction, or giving tax breaks to the wealthy and the would-be wealthy. One need only turn on a radio talk-show to hear this kind of view expounded in terms both crude and cruel.

Unfortunately, the people who call in to these shows, and listen to them, also vote -- probably more consistently than the rest of us. As a result, their convictions have gained respectability and influence within the halls of Congress. The threat they represent is growing more real. Several advocates grimly told me about politicians with dangerous ideas who are gaining power in Congress. For example, one described a certain U.S. Representative, who played a key part in last year's elimination of SSI eligibility for many classes of disabled children. Now, he is in line for the chairmanship of the Social Security Subcommittee. The advocate quoted this Congressman as saying, "When we're done with the kids, we're going after the adults."

These chilling words haunted me throughout the way; and they haunt me still. I can't help wondering: Will all our hard-won gains, such as the Americans with Disabilities Act, be rendered useless because, while some of us weren't looking, our community was plunged even deeper into poverty? After all, survival is a prerequisite to the exercise of civil rights.

* * * *

This week, the advocacy torch is being valiantly carried in Washington D.C. by members of ADAPT -- American Disabled for Attendant Programs Today. They are demanding passage of the Medicaid Community Attendant Services Act, or "MiCASA, which would allow qualified people with disabilities in every state to obtain in-home services, rather than being forced into a nursing home. MiCASA was introduced, amid great fanfare, in the just-ended congressional session. But it failed to go anywhere, partly because (a) the Clinton Administration failed to support it, because it was introduced by Republican Speaker Newt Gingrich; and (b) Gingrich failed to follow through on his initial support. It was a victory of partisanship and public relations over sound policy-making.

So now, ADAPT is back in town to demand that the politicians get it together, and do a better job in the next session. I've been following ADAPT's actions closely. If you want to do the same, go to the ADAPT Press Room web page. There's also lots of good information about ADAPT, and about other activist movements, at Mike Reynolds' Uppity Disability Internet Resources web page.

Column from October 22, 1998

Do More Than Vote!

Tuesday, November 3^rd is fast approaching. On that day, people all across the nation will be shutting the black curtains of secrecy behind them for a few minutes, while they carefully twist a series of switches to express their political wills. We Coloradans will elect a governor, an attorney general, a secretary of state, a state treasurer, and a U.S. senator, among other state officials; as well as state and federal representatives from various districts throughout the state. We will also vote on a variety of ballot initiatives, on topics ranging from a tax-supported stadium to the medical use of marijuana.

We will hear lots of messages in the next few weeks, urging us to vote one way or another. Some citizens will become so overloaded with information, or so disgusted by the candidates' mutual mud-slinging, that they will just decide not to vote. Actually, there are right-wing strategists who are counting on that. I learned about this from an excellent article called "Apathy, Inc.," from the October issue of Progressive magazine. It's about a group of Republican consultants who specialize in keeping voter turnout low. They figure that if they can keep people from going to the polls, their candidates and issues have a better chance of success. How's that for democracy in action?

Other, more civic-minded people will encourage us to do our duty and vote. We'll hear public service announcements featuring community leaders, reminding us of our forebearers' historic struggles to obtain suffrage for successive groups of Americans. We'll see bumper stickers that say, "If you don't vote, don't complain."

For me, this chorus of pro-voting sentiment begins to ring a little hollow. Don't get me wrong -- I'm all for voting. I haven't missed an election since I turned 18, and I encourage everyone I know to vote too.

My problem with the "duty to vote" message is simply this: It's not enough. These advocates of exercising your right to vote seem, often, to think that that's all the exercise you need! Show up at the ballot box once every two or four years, and you're fully flexing the freedom that is your birthright as an American.

I don't agree. I think it takes more than voting -- a lot more -- to be a real participant in the democratic process. Voting is not the be-all and end-all of active citizenship. It's only beginning.

And this is only the beginning of my column! Click below to read the rest.

Cool Graphic Version | Text-Only Version

Column from October 15, 1998

Prejudice and Hate Violence Must Be Confronted

The ugly, violent death of Matthew Shepard has been much on my mind this week. Judging from the crowd that showed up at the Colorado State Capitol for a rally in his honor Monday evening, I'm far from being the only one who is haunted by the brutal murder of this young gay college student. The media, too, has been buzzing about this horrible crime, and about the life of Matthew Shepard, who is described by family and friends as large-hearted, gentle, generous, and idealistic.

Why am I addressing this incident in "Crip Commentary"? If you think this issue isn't relevant to the disability-rights movement, please read on.

People with disabilities, like homosexuals and other people who live outside our culture's rather narrow "norm," face prejudice and discrimination every day. Sometimes that prejudice flares into life-threatening violence; and when it does, we are all vulnerable. Matthew Shepard had his basic human rights violated; he was targeted because of his minority status as an out gay man. The attack on Shepard provides a sickening reminder of the consequences of bigotry. It clearly constituted an example of hate violence -- perpetrated by two hate-filled individuals, but not in a vacuum. Our society harbors a deep ambivalence about the presence of various minority groups, including but not limited to lesbians, gay men, people of color, Jews, Muslims, homeless people, and people with disabilities.

Sometimes this ambivalence is expressed through individual acts of violence; at other times it is expressed through public policy. In 1992, for example, Coloradans voted to deny equal protection of the law to gay and lesbian people. (If you voted "yes" on Amendment 2, I don't want to hear your outrage about Matthew Shepard's murder.) After a long legal battle, the U.S. Supreme Court declared this initiative unconstitutional. Yet last week, that same Court allowed a similar ballot measure, this one in Cincinnati, to stand.

Another example: As we speak, forces are gathering momentum to sharply curtail disabled children's right to an equal, integrated education. As this congressional session ends, the Individuals with Disabilities Education Act (IDEA) had barely (so far) escaped being gutted by amendments, including one which would have allowed school personnel to unilaterally, without parents' consent, place some children in segregated settings for an infinite period of time -- possibly forever. (Current law allows parents to appeal such decisions, and limits out-of-class placements to 45 days.)

When politicians and/or citizens craft laws designed to limit one group's civil rights or educational opportunities, our society takes a step back from the lofty ideals of Justice and Equality. When that happens, the targeted group takes a collective blow. Its diminished political power makes it more vulnerable to attacks, both legal and extra-legal. To put it more simply, an intolerant society just isn't a safe place for anyone who is considered "different."

Despite the media's expressions of shock and surprise, hate violence occurs every day, against every identifiable minority group in our society. It's not always blatantly physical, and it's only occasionally lethal. It might be a pink-triangle bumper sticker defaced with an epithet like "fag." Or it may take the form of a racist, anti-Arab comment directed against a Saudi graduate student. Or it may be cruel pranks committed against a neighbor with a psychiatric disability. News reporters don't pay much attention to common occurrences like these. If they did, maybe they could help to prevent hate crimes by making the general public aware of the threat that bigotry poses.

The tragic drama of Shepard's murder reinforces the necessity of passing comprehensive hate crimes legislation. Colorado currently has a state hate crimes law which increases the penalties for acts of violence which are demonstrably committed because of the victim's ethnicity or religion. In recent years, several lawmakers have tried to add sexual orientation, disability, and age to Colorado's hate crimes law, but their efforts were defeated -- largely because of anti-gay bias among conservative legislators. Wyoming, where Shepard was killed, has no hate crimes legislation on the books at all.

Some people question the need for such legislation, stubbornly refusing to recognize the manifest reality that hate crimes are not only widespread, but also powerfully oppressive to the communities they target. One study concluded that throughout the United States, someone is attacked because they are gay or lesbian at least twice a week. Other studies have documented the high rate of violence against people with disabilities. In the early 1990s, a California state task force found that sexual assaults and robberies were nearly 13 times more common among the disabled than the general public. These statistics were probably understated: A 1992 study showed that 71 percent of crimes against disabled people were never reported.

We know, from news reports, that violence targets people with disabilities fairly frequently. Two rather horrible recent examples:

�In early October, a woman was convicted of abusing two mentally disabled women while holding them captive on an upstate New York farm. The two victims said that the woman and her parents beat them repeatedly, tied them to box springs for long periods of time, and usually stole their disability payments.

�In July, a 15-year-old Pennsylvania girl with a learning disability, reportedly shy and unpopular but eager to make friends, was tricked by several classmates into putting a noose around her neck. Realizing too late that this was no game, the teenager was hanged and then beaten with a rock until she died.

Whether they launch their attacks in bars or dark alleys or along deserted highways; or in nursing homes or group homes; or in state legislatures, or the halls of Congress, the hate mongers must be confronted and stopped. We all have the right to exist, and to play an active role in our communities. That right should not depend on staying hidden, or keeping quiet about whom we love and how we live.

It's a sad irony that Matthew Shepard's murder occurred during National Coming out Week. But it also adds more weight to the importance of self-identifying, and of claiming the pride that is rightfully ours. As more and more of us are willing to be unapologetically present, open, and visible, we add to the numbers -- and thus, to the political power -- of our own minority communities. That can make it harder for the bigots to isolate and attack individuals.

So, to close this edition of "Crip Commentary," I'll accept my own invitation: I'll assert my right to be who I am, and to insist that being myself should not compromise my equality, my presence in society, or my safety. I am a disabled woman, a lesbian, an activist, and a citizen.

Rest in peace, Matthew.

Column from October 8, 1998

Disabled Women Organize Worldwide to Build Unity and Power

[I wrote the article below a couple of years ago, but it's never been published until now. It describes some of the exciting organizing and advocacy activities of women with disabilities around the world. Those who are quoted in this piece are people I had the pleasure of meeting in Beijing, China, at the NGO Forum on Women. I saw most of them again last year, at the International Leadership Forum for Women with Disabilities in Bethesda, Maryland.]

"In South Korea, women with disabilities are hiding in their houses. So very few women with disabilities talk to each other. It's a bad situation... Also, there are many committees, many meetings, many institutes to support disabled persons in South Korea, but all the leaders are men. That is our situation. So we don't think of ourselves as leaders." So says Kim Mi Yeon, a 28- year-old activist from Seoul. But that situation is starting to change, she adds. With justifiable pride, Kim states, "The movement of women with disabilities in South Korea is beginning."

Kim's words describe disabled women's predicament and potential, not just in her country, but around the world. Globally, women with disabilities are some of the most oppressed members of many societies. With less access to education, jobs, power, community support, and choices than almost anyone, disabled women often live in poverty and isolation.

Yet women with disabilities are now organizing and advocating on their own behalf more than ever before. On every continent, new leaders are emerging to oppose double discrimination based on sex and disability. Whether by working within existing disability groups to form "women's wings," or by creating brand new women's organizations from the grassroots up, determined activists are bringing a gender perspective to the intentional disability- rights movement.

Many of these leaders travelled to Beijing, China, in August to participate in the Fourth Non-Governmental Organizations (NGO) Forum on Women. I went to Beijing eager to see how far disabled women have come since 1985, when the last NGO Forum took place in Nairobi, Kenya. As in Nairobi, we constituted a small but visible minority at the Forum in Beijing. Out of the twenty to thirty thousand attendees, the "disability contingent" numbered perhaps two hundred.

In connection with a research project for the World Institute on Disability (WID) and Mobility International USA (MIUSA), I interviewed disabled women from two dozen countries at the NGO Forum. It was exhilarating to learn that despite continuing oppression, and in some cases greatly increased hardships, women with disabilities throughout the world have made substantial efforts to improve their status -- and sometimes succeeded.

Some of these campaigns have succeeded only in the sense of creating opportunities for women with disabilities to meet each other, nurture their own self-respect and pride, develop agendas for change, and look toward the future. The South Korean disabled women's group, for example, was formed just last December by three women. It now has twenty-five active members. Members recently conducted a survey. Kim reports that among other problems, the survey identified barriers to education as a major issue for women with disabilities. "Half of them cannot receive education beyond middle school. No high school or graduate university education. Society is not integrated, so some people, especially the mentally disabled women or blind disabled women, deaf, if they went to education, they went to special school that is isolated from normal social situation."

Other efforts have yielded concrete results, even helped shape public policy. In Nepal, the National Federation for the Disabled has a woman, Sushila Pauden, as Secretary General. Pauden is also a founder of the Nepal Disabled Women's Society. She has been actively lobbying for amendments to the Disabled Protection Act of 1981. The Act is scheduled for legislative review next year, and Pauden's National Federation is using this opportunity to push for progressive changes in the language of the law. Pauden says the Nepalese government has so far responded favorably to her recommendations. For example, in the area of special education, Pauden says, "Because myself was also there, the government has approved: The integrated system will be implemented."

In other countries, too, women with disabilities are seeking opportunities to influence government policy. Economic growth has a major impact on disabled women's lives, so advocates in Malaysia are beginning to concentrate on development issues. "Every five years we have a development plan for the country," says Bathmavathi Krishnan, Secretary of the Malaysian Spinal Injuries Association, (MASIA). The development plan outlines implementation strategies and budgets for development programs. The sixth and latest plan includes a chapter called "Women and Family." Krishnan says, "We see that as a big step in the government acknowledgement that women have been left behind and they need to be included in the economic development of the country. We are going to start this [disabled] women's group and straightaway be - we want to be - incorporated into all women's programs that have been planned. We have some very good allies... And people we've talked to are receptive. We are pleased that we are going to have a good start." Malaysia's disability rights movement is benefiting from the leadership of a generation of well-educated disabled women.

In numerous countries, problems like poverty, illiteracy, and the subjugation of women are compounded for women with disabilities. General economic conditions, combined with barriers and discrimination, put self-sufficiency out of the reach of many disabled women. And their deprivation is often worsened by cultural attitudes which devalue disabled women. Throughout the world, women with disabilities are rising to these challenges, and looking to new leaders within their communities.

Angelica Monteagudo, of El Salvador, started a support group which met every week in a church. That group grew eventually into a cooperative in which two hundred members, mostly women, make handicrafts. "Now we are trying to start the National Union of People with Disabilities," says Monteagudo.

Organizing is an uphill battle in El Salvador, as in many countries. "The majority of women are poor," Monteagudo says. She adds, "The family doesn't like that we as women go out because of the social problems in my country. The violence has increased after the war."

Monteagudo continues, "And another barrier is bigger. The organization that supposedly works for disabled people -- they have a lot of financial support out of the country, international help. But... they don't give opportunities to the disabled people,... because sometimes we point to their mistakes and so they close all the opportunities to us.

"Women in El Salvador has double discrimination," says Monteagudo; "Once, because she is woman and the second, because she is disabled."

These problems plague Americans too. "It's the same thing in the States," says Zully Alvarado, a Chicago businesswoman and advocate. "When you come to corporations, they look at you and you have a disability and they think that you can't even talk for yourself."

Social stigma, political powerlessness, and economic injustice create obstacles for both women and men with disabilities. But many women also encounter sexism from their male colleagues in disability rights movements. Patrona Sanduval and other Nicaraguan women felt excluded from their country's largest disability organization. "This organization... said that because we weren't veterans, we didn't have the right to participate," Sanduval explains. "It was for that reason that I began to organize disabled women. I would visit them house by house until we formed a group."

Katherine Tsegli, Women's Leader of the Ghana Society of the Physically Disabled, remarks, "A lot of our women have financial problems... You see a lot of them by the roadside begging, which will not last for long." Tsegli took it upon herself to do something to help her sisters become workers, not beggars. "I decided to bring them together to form an income generating projects." Members work together to learn sewing skills, then go into business for themselves. Tsegli reports: "Some have taken the initiative and they have started and they are living well. But it's funding that has been a problem for us now."

Mphomela Mathabo chairs the women's wing of the Lesotho National Federation of Organizations of the Disabled, a cross- disability umbrella group. Mphomela expresses her philosophy of empowering her countrywomen -- both those who have disabilities themselves, and mothers of children with disabilities. "I think those women must get their awareness to know that their children or their disability is not a punishment," says Mphomela. "They must work hard and do something to help their lives. By doing maybe projects." However, she adds, Lesotho's agricultural and economic conditions make success difficult. "It's hard now to do projects because our country, we rely on soil and we have a big drought. Two years now and we don't have any rain."

Income generation is also a priority in other African countries. The Uganda Disabled Women's Association (UDWA) was formed in 1986. Its goal, according to Administrator Florence Adong, is "to uplift the standard of disabled women in Uganda and to unite in one voice." The Association offers revolving loans, which have enabled more than twenty women with disabilities to start businesses. Women entrepreneurs are further supported through the UDWA's craft shop, which sells mats, baskets, and other handmade items.

In addition, Adong describes the UDWA's child education program, which pays school fees for eighty children -- fifty non- disabled children of disabled parents, and thirty children with disabilities. "We have come up with that program so that they cannot, they should not hide disabled children behind," Adong says.

"Disabled women, girls, were denied education," says Adong, "both by their parents and the government. Right now, those who had a chance and went to school, they are very few." Yet Adong does not underrate these women's capacity for taking charge of their own lives. "Most of the ladies, disabled ladies, are leaders. In their own homes, where they live, they're leaders."

[Robin Stephens contributed to the research in this article.]

Column from October 1, 1998

Inclusion Works

Almost one month into the new school year, and after much time unnecessarily wasted, two teenage girls are finally taking their rightful place in high school.

Diana and Yesenia are the youngest members of a family that moved to Colorado several years ago, from Mexico. Both parents still communicate solely in Spanish, but they have encouraged their children to immerse themselves education -- including, but not limited to, learning English. Most of the older siblings have graduated from high school and are now working in the community, and/or raising families of their own.

I met Diana and Yesenia through my friend Kathy Bougher, a dedicated bilingual social studies teacher who is a friend of the family. Kathy is also the girls' godmother. I've occasionally gone along when she has taken them on outings -- to Elitch Gardens Amusement Park, to the Tattered Cover Bookstore, to Colorado Xplosion women's basketball games, and so on. I've enjoyed getting to know these young women. Both are personable, inquisitive, and eager for new experiences. They both have a lot of potential, which unfortunately the school system has been reluctant to nurture.

Naturally, Diana and Yesenia dream of following in the footsteps of their older brothers and sisters. They want to learn as much as they can, make friends, keep improving their English and, someday, have jobs, earn money, and travel the world. But because both have a congenital disability which affects their physical development as well as their learning processes, other people sometimes doubt their capacity for achieving their goals.

Often, those kinds of doubts can become a self-fulfilling prophecy for students with disabilities. Once labeled disabled, students are prone to being written off as having no real future. They may be consigned to segregated "self-contained classrooms" or "resource rooms," where they stagnate with little academic or social stimulation.

A 1995 report by the U.S. Department of Education revealed that the majority of students with disabilities -- 57 percent -- are still placed in separate educational programs, apart from peers their own age without disabilities. Many school districts, administrators, and teachers resist full inclusion, for a variety of reasons: the cost of providing support services; teachers' inexperience and discomfort in dealing with certain types of disabilities; and the perceived impact of disabled children's presence on the classroom environment. Frequently, parents who want the best for their children must devote a great deal of time and energy to advocacy.

Diana got off to a good start during middle school. There she was in regular classes, alongside her peers who liked and encouraged her. Then, when she entered high school, everything changed -- not because she changed, but because even within the same district, different schools have vastly different policies for how to educate students with disabilities. Last year, in the 10th grade, Diana spent most of every day in a segregated special ed classroom where she was so bored that she sometimes fell asleep. Most days, she was even kept in that classroom for lunch.

Her sister entered high school this year. For the first couple of weeks, both Diana and Yesenia found themselves still languishing in "special segregation," as the inclusion advocates call it. Their mother was unhappy to see this trend continue. All along, she had wanted her daughters to receive a real education, and have opportunities for friendship and independence. But it's not easy to make the school system provide such an environment. Parents of disabled children must become tireless, sophisticated advocates in order to successfully secured their children's educational rights. Such advocacy is especially difficult for a parent who must work full-time, and who does not speak English.

But finally, on Labor Day, the girls and their mother studied the school's schedule, with the help of a few friends, including Kathy and me. We helped them select the classes they wanted. With her oldest son serving as interpreter, their mother went to school the next day and asked that Diana and Yesenia be moved into these classes immediately. Amazingly, the administration agreed. So did all the teachers.

In the demanding, rough-and-tumble world of an urban high school, Diana and Yesenia are beginning to thrive. Their English is improving steadily, because they have more people to talk to, and more things to talk about. They're becoming more competent and confident. They both sing in the school choir, and have gone on choir field trips. They are participating actively in their classes. Although they cannot work at the same academic level as most other students, they can and do work on the same subjects, performing at their own best level. This week, Diana played a part in a classroom skit designed to demonstrate various leadership styles. She delivered her lines flawlessly.

The lesson here? While Diana and Yesenia cannot compete with their fellow students, they can cooperate with them. They can learn with them. Inclusion works.

The family's victory is not complete. They will still have to push hard for the services and supports that Diana and Yesenia need in order to reach their full academic and social potential. But getting them out of "special segregation," and into real education, is a good start.

Educating students with disabilities shouldn't be limited to a narrow, specialized field of study or profession. Nor should it be considered a private concern of those families who happen to have a child with a disability. This issue affects us all, one way or another.

Therefore, every one of us should participate, one way or another, in next Sunday's "Rally to End Special Segregation." Many thousands will gather in Washington D.C. for a massive demonstration in support of the guiding concepts of IDEA -- the Individuals with Disabilities Education Act. This legislation promises students with disabilities an "equal, appropriate education" in the "least restrictive environment possible." Unfortunately, it's under attack by people who have the mistaken and bigoted notion that the presence of students with disabilities detracts from other students' educational experiences. The October 11 rally will tell the other side of the story -- that inclusion benefits students with disabilities, students without disabilities, families and communities.

Concurrent rallies will be held in cities around the nation. Coloradans will gather at the state Capitol Building in Denver, at noon. Remember, that's next Sunday, October 11, at 12 noon.

I'll see you there!

Column from September 16, 1998

AN OPEN LETTER TO U.S. SENATE CANDIDATE DOTTIE LAMM:

Dear Ms. Lamm:

By waging an energetic campaign, you won the Democratic Party nomination to run for one of Colorado's two U.S. Senate seats. You have broadcast numerous television advertisements, asking the public to vote for you. You have also approached me personally, most recently at the Americans with Disabilities Act (ADA) anniversary celebration, to request my support for your candidacy. I write this letter in response to that request.

In much of your publicity, you portray yourself as a health care advocate. Since this is one of my primary concerns also, I will focus this particular discussion on the issue of health care economics. If you become the next U.S. Senator from Colorado, you will have many opportunities to cast votes which will directly and disproportionately affect people who, like myself and many of my friends, have long-term disabilities and/or chronic illnesses. I must confess, up front, that I believe we may have reason to fear your votes on issues relating to health care. I hope that your response to this letter may put my fears to rest.

I often, in the past, read your newspaper column - as I know that you read mine. In your articles, you occasionally and passionately mentioned your support for the legalization of physician-assisted suicide. Once, I recall, you wrote that the so-called "right to die" would become "the civil rights movement of the 21^st century." You based this statement on the premise that there would be more old, sick, and disabled people living in the new millennium. Your unspoken assumption was that many of these people would be miserable, and therefore unwilling to continue living. However, as we in the disability-rights movement have pointed out, the misery of old and disabled people is more often the product of society's neglect, rather than of their own physical problems. Similarly, I believe that the push for assisted suicide has more to do with society's unwillingness to support ill and/or disabled people's needs for medical care and independent living supports, than with an inherent loss of their will to live. In fact, if assisted suicide becomes a legal practice, our increasingly profit-driven health care system is likely to make it a standard practice.

So, my first two questions to you are these:

In an increasingly restrictive health care environment, where patients are often forced to accept cheaper, inferior treatments, or no treatments at all; and where people with long-term disabilities are often denied the services that they need in order to attain a high quality of life; will you continue to promote the legalization of assisted-suicide? and,

Does your enthusiasm for the "right to die" outweigh any concerns about supporting people's right - and ability - to live?

In addition to your own writings, another source of my concern lies in the well-documented opinions of your husband, former Colorado Governor Richard Lamm. I realize that you are your own person. As a feminist (one belief system that you and I do share!) I would never make the mistake of casting you in your husband's shadow. However, with any public figure it is customary and, I think, legitimate to examine possible influences from close friends, business associates, and family members - especially when those people may hold divisive and/or dangerous views.

Your husband is a prominent national advocate of what is sometimes referred to as "distributive medicine." This philosophy posits a fundamental contradiction between the health needs of the individual, and the fiscal needs of the community. In a recent article which he authored for the New England Journal of Medicine (Sept. 9 issue), former Governor Lamm argued that the U.S. is "spending too much money" on health care, and "receiving insufficient returns on our dollars spent." He went on to make statements which are chilling in their potential implications: "The best medicine for an individual is not always the best health policy for society. Government's goal is health and the physician's definition of health care is not always the best or most efficient way to deliver health."

It is interesting that, in criticizing the inefficiencies and financial excesses of the current delivery system, Mr. Lamm does not fix blame on the corporations which divert resources away from public care, and into private profits. Rather, he seems to point the accusing finger at individuals who need health care services. It doesn't take a rocket scientist (or a bioethicist) to figure out that he regards individuals who need extensive health care services - i.e., people with disabilities and chronic health conditions - as the biggest problem of all.

This leads me to my next set of questions:

Do you embrace, or disavow, the idea that individuals' health needs should be disregarded when they might undermine the "efficiency" of corporate-controlled medicine?

Your husband's statement that "the physician's definition of health care is not always the best or most efficient way to deliver health" seems to imply that medical decisionmaking should be taken out of the hands of medical doctors - or at least that doctors' decisions should be second-guessed by efficiency experts. Do you agree with this?

If you are elected to the U.S. Senate, will you support or oppose legislation that would ration public health care resources such as Medicaid, and that would deny or would "capitate" services and treatments to low-income people with disabilities and chronic health conditions?

In your opinion, should individuals whose lives depend on expensive, on-going services and supports be provided those services on a long-term basis? Or, does there come a point at which these services bring, in Mr. Lamm's words, "insufficient returns on dollars spent"?

Let me clarify this last question by offering myself as an example: I rely on Medicaid to provide health care services which are essential for sustaining my life, my health, and my independence. These services include home health aide services, continuous supplemental oxygen, nighttime ventilatory support, and wheelchair repairs, among other things.

Am I, in your view, squandering the taxpayers' money? Are people with significant disabilities to blame, as Mr. Lamm asserts, for the fact that many low-income pregnant women don't receive adequate prenatal care?

Will you, as a U.S. senator, vote to "redistribute" the resources on which disabled people's lives depend, while allowing wasteful corporate profit-seeking to dominate the health care delivery system?

I look forward to your response to these questions.

Sincerely,

Laura Hershey

I've still had no response from U.S. Senate candidate Dottie Lamm in response to my "Open Letter" above. However, alert reader Carrie Lucas did write directly to Ms. Lamm's campaign office, asking her about her stances on health care, assisted suicide, and disability rights. Click here to read the correspondence between Carrie Lucas and a Lamm staffer.

Click here to go to the Dottie Lamm campaign's website, and send her email from there asking her about her positions on health care, assisted suicide, and disability rights.

Column from September 9, 1998

What's Pride Got to Do with It?

"Disabled and Proud" read the hand-drawn poster duct-taped to the frame of my wheelchair, across the front of my legs. "What does that mean?" a stranger asked me as if we'd been having an ongoing conversation.

The unsympathetic sun forced me to squint, so I couldn't really meet the stranger's look straight on. And he was on his way into the grocery store. The automatic door was already standing open, inviting him irresistibly toward the refrigerated interior, away from the grinding heat. I knew I had to make my response quick and to the point. "We're just trying to let people know," I said, "that the Jerry Lewis Telethon doesn't tell the truth about our lives. The Telethon says we're helpless, pathetic objects of charity. But we're not. We have dignity and pride."

"Oh," the stranger said, and moved on.

Protests are a form of communication all their own. You have to learn to take full advantage of that momentary human contact which, in the course of an ordinary day, is filled with small talk, or remains empty. Most interactions with strangers are fairly nondescript -- "Excuse me." "After you." "Thanks." Or, as summer temperatures increase and road rage spills over into pedestrian life, meetings between strangers become less pleasant -- "Hey, look where you're going." "I was in line first."

But during a protest, even a simple informational picket like the one we did on Labor Day, those brief encounters suddenly fill with meaning. Strangers become an unsuspecting audience, potential converts who must be confronted one way or another; and who are as likely as not to confront you right back. Your presence, and whatever information you manage to convey in a two-second conversation, often challenges them on some level. They have every right to challenge you in turn. That shopper's blunt question -- "What does that mean?" -- challenged me to explain myself and the slogan I wore so boldly. My response could have been shorter, smarter, more sound-bite-sharp. But it was the best I could come up with on short notice. The opportunity to reach him ended when he passed through that supermarket door. Who knows whether my answer made any more sense to him than the poster that had prompted his question?

Indeed, who knows? Maybe he pocketed the flyer that one of my comrades thrust toward him. Maybe, when he got home, he studied it and his curiosity grew. Maybe he sat down at his computer, if he has one, and started surfing the 'Net to see what else he could learn. Maybe he typed the word "disabled" into a search engine, found some interesting websites, followed some links, and ended up right here, reading these words. And maybe as he's reading, he's still thinking, "'Disabled and Proud'? -- What does that mean?" If so, maybe he deserves a more thorough answer.

Pride has played a key role in many civil rights movements. It's often been a reaction to, and a rejection of, efforts by the majority culture to instill shame among members of the minority. In the 1960's, African-Americans overturned centuries of violent degradation with the slogans "Black Power" and "Black Is Beautiful." A decade later, gay men and lesbians fought back against police harrassment, religious condemnation, and oppressive psychiatric practices by proclaiming "Gay Pride."

Now, as the century ends, people with disabilities are loudly resisting the notions that we are inferior, that our disabilities somehow dilute our humanity. Those notions -- which the Jerry Lewis Telethon perpetuates, but certainly didn't invent -- do more than insult us; they actually diminish and endanger our lives. Authorities stand idly by as Jack Kevorkian kills dozens of people with non-terminal disabilities. In Oregon, Michigan, and other states, a movement gathers steam to legalize and expand this killing. At the same time, public and private health care providers impose lethal limitations on the things that people with disabilities need in order to live healthy, independent lives. People with disabilities continue to be passed over for employment and social opportunities. Many are segregated into separate-and-unequal classrooms, jobs, and housing.

Against these odds, pride might seem a weak weapon. Pride doesn't pay the rent, or an attendant's wages. It doesn't get you onto an inaccessible Greyhound bus.

But pride can prepare you to demand these things -- and that's a pretty good start. Equipped with pride, you're not going to be very willing to beg and plead and hope the public is feeling generous. That's the Telethon's approach. Instead, you'll assert that you have the right, both to survive and to thrive. You'll insist that you're an asset to society, disability and all; and that therefore, it's in society's best interest to make sure that you're integrated, accommodated, supported -- even if that costs money. You won't apologize for using public dollars, or for making demands upon private businesses, because you figure that living in a human community means giving and taking. It means celebrating diversity, and enjoying interdependence.

My poster didn't say "Disabled but Proud." It didn't say "Proud of Being Disabled." There's no contradiction here, and no false sense of moral superiority conferred by living with a disability. I'm not taking credit for the fact that I was born with a disability. That was pure chance. Nor do I consider myself, or other people with disabilities, better than non-disabled people (though I will admit, just between you and me and the entire cyber-universe, that I think people who aren't actively involved in the disability community are missing out on a hell of a lot).

So then, what does it mean to be "Disabled and Proud"? For me, it means that while everyone else is making their own unique contribution to the world, I'm making mine too. It means I can be a lot of things -- a compound of identities, roles, experiences, gains, losses, feelings, ideas, actions -- and that every piece of me belongs together. None of my pieces need to be erased or hidden. And I'll fight the idea -- whether promoted by Jerry Lewis, or by Jack Kevorkian -- that disability is intolerable and must be eliminated from the world.

"Disabled and Proud." It says it all: I belong in the world, with every aspect intact and visible. I will not seek to conform in order to be "mainstreamed." If the mainstream can't accept me as I am, maybe it needs to flow in a different direction. Instead of trying to go with someone else's flow, I'll help to expand the river, to carry and support all kinds of crafts.

Column from September 1, 1998

How to Deal with the Telethon?

Once again, it's almost time for the Jerry Lewis Labor Day Telethon, sponsored by the Muscular Dystrophy Association (MDA). Every year, I greet Labor Day weekend with a kind of weary uncertainty. I'm never quite sure what tone to take in talking or writing about the Telethon. Should I use gentle persuasion, carefully explaining the negative effects of high-stakes broadcast begging on the dignity and civil rights of people with disabilities? Should I indulge in sarcasm, taking cheap shots at the ridiculous figure of Jerry Lewis, who in his ignorance and egoism poses as disabled people's savior? Or should I give free rein to my anger, opening wounds caused by the Telethon's false and bigoted presentation? The only thing I know for sure is that as much as I would like to, I can't ignore the Telethon.

A friend recently reminded me, in another context, that an activist's first and highest duty is to educate. We may choose different ways to do so, each finding strategies and methods which produce the results we want, and which best reflect our values. Even when our primary goal is something more particular -- such as lobbying for a piece of legislation, or securing a legal right through a lawsuit -- raising awareness remains crucial, as both a means and an ends.

With an issue like the Telethon, education is especially necessary. The Telethon itself both represents and shapes public perceptions of people with disabilities. The disability rights movement, for the most part, opposes the Jerry Lewis Telethon and telethons in general because sorrow and pity hinder our drive for respect and equality. The highly-paid corporate executives and media moguls who produce the Jerry Lewis Telethon know that raising massive amounts of money for MDA depends upon eliciting emotional responses from viewers. If people can be persuaded that having a neuromuscular disability makes one's life miserable, they are more likely to open their wallet. If they can be made to believe that a cure for this terrible scourge is right around the corner, they will want to be a part of that.

Both parts of that story are lies. Having a neuromuscular disability, or any disability for that matter, is only one aspect of any human life. I have a neuromuscular disability called spinal muscular atrophy, or SMA. (I was even an MDA poster child! But that's another story.) My disability has introduced problems into my life -- some organic to the physical condition; but most caused by its social consequences, like prejudice, economic oppression, and barriers in the built environment. The latter problems can be changed through activism; and for me, that activism is a source of tremendous energy, creativity, and connection with others who share my political ideals.

Even my weakened respiratory system, which I would have to concede is the "worst" inherent aspect of my disability itself, nevertheless contributes to the richness of my life's experience. Bouts with respiratory complications have forced me to learn to navigate and advocate within the medical system; to strive to understand my own body's needs and processes; and to play an active part in my own health and healing. This is valuable, life-enhancing knowledge.

I'm not trying to affect a bright, cheery attitude here. I'm just stating that living with a disability is an experience that's multidimensional and interesting and mostly positive. In contrast, the Jerry Lewis Telethon presents it as a full-blown tragedy, something to be avoided at all costs. (That's why MDA is so proud of recent advances in genetic research, which allow prospective parents to decide not to give birth to a child with SMA.) That portrayal invalidates -- literally, makes invalids of -- people with disabilities and the hard-won perspectives we can offer.

But our lives, our disability experiences, are valid, and valuable. I wouldn't trade those experiences for anything.... not even for the vaunted cure. Which brings us to the Jerry Lewis Telethon's other big lie. Every year, Jerry tearfully tells us that thanks to the Telethon, people with neuromuscular diseases are going to be up on their feet sometime soon, throwing away perfectly good wheelchairs and braces. He goes absolutely berserk with this idea; and his co-hosts and audiences follow him right down that path to that Promised Land.

I was fascinated recently to discover MDA's web page. It's a good resource! Some people might be surprised that I have anything good to say about this organization, but it's true. Once you get past the Telethon hype and glitz on the home page, you can find some pretty useful information. There is a section called "Ask the Experts," where people can write in with questions related to neuromuscular disabilities. A number of questions are posted, along with replies from physicians who specialize in the various topics addressed.

When I last read "Ask the Experts," I found lots of questions about the coming of the cure. Many readers wanted to know when clinical trials would begin for various treatments they'd heard about. In almost all cases, the doctors responded with great caution. They said things like: "...it is very hard to predict the exact pace that expected advances will take"; and "This is something that cannot be predicted with certainty"; and "Gene therapy faces serious technical problems. It is very hard to say when these will be solved. Scientific discoveries are hard to predict..."

Remember, this is MDA's official website! The information provided there doesn't support the overblown claims of imminent, dramatic cures which are made on the Telethon. That kind of talk is strictly a marketing ploy.

But it's worse than that. It does real damage to people's thinking about disability -- both people in general, and people with disabilities themselves. For the nondisabled public, the "cure" message suggests that disability, and the demands for access and inclusion and equality that go with it, can be made to go away, if enough money can be raised to spend on medical research.

And for some people with disabilities, that "cure" message says: Just hang in there. Your nightmare is almost over. You won't be like this for long.

That may sound like a benign promise, but it has real negative consequences for real people. I think it encourages some people to avoid the hard work of accepting and accommodating their disabilities, and moving on with their lives. One man wrote to MDA's "Ask the Experts," asking when the treatments would be available for his particular condition. He was having great difficulty walking, and he felt that using a wheelchair would make him less tired and more functional. But, having heard so much about MDA's treatment research, he was reluctant to make the transition to a wheelchair, because he was afraid he would be less able to benefit from the cure when it came. The doctors advised him to go ahead and use the chair. I hope he took their advice.

Telethon supporters insist that today's production is not the pity-fest of yesteryear. It's a New Improved Telethon, complete with stories of successful adults with neuromuscular diseases. It's true, you see the occasional teacher or lawyer, moving competently through their daily lives. But the Telethon never lets you forget, for very long, that it's up to you the viewer to save these doomed people. That double lie -- that our lives are unbearable, but a cure is on its way -- is always there, either right in your face, or just below the surface.

The people who donate money to the Telethon are probably, most of them, good people. They don't intend to impede our quest for civil rights. But they do so, simply by believing the lies about our lives that the Telethon offers up.

So, this Labor Day weekend, let's be gently persuasive with those well-meaning people who are our fellow citizens and potential allies. Let's tell sarcastic jokes to each other, diffusing the Telethon's destructive power with our own sharp humor. Let's vent our righteous anger at those multimillion-dollar organizations, completely dominated by nondisabled people -- namely, MDA and its corporate sponsors -- that enrich themselves by manipulating public opinion, hoarding resources, and demeaning the disability experience.

Let's be activists: Educate, educate, EDUCATE!

Column from August 25, 1998

Opening Economic Dialogues Within the Disability Community

A couple of weeks ago, we began a dialogue on this website about economics and disability. This topic stirred numerous responses. Obviously a lot more people are thinking about this issue than I had realized. Economics is, literally, a life-and-death issue for people with disabilities.

One of the most thought-provoking responses came from a reader who reminded me that economic justice in the U.S. is not a new idea. In the 1930's, President Franklin Roosevelt began promoting an "Economic Bill of Rights," which would have guaranteed every American a base income. This reader said that since learning about that bill - which was never introduced - she has written to Congress and to President Clinton to support reviving the concept. She believes such a law would benefit both people with and without disabilities: "It would ensure every American funds for enough food, medication, a roof, clothing, energy sources for heat etc., and replacement funds for equipement failure and replacement as necessary. It would be cheaper than flow throughs and cut wealth that seeps into hands of people whose motives are far too excessively greedy, instead of people whose needs are being exploited."

Generally, the leaders and organizations guiding disability-rights movement nationally have yet to catch up with this grassroots conversation. I'm not holding my breath. Many of them are satisfied with the economic status quo which keeps them employed as professional advocates - as long as they don't challenge the system too vigorously.

I think a truer, more in-depth critique of the economic system will come from people who aren't ensconced in Washington, wearing expensive suits. We can begin developing the movement's economic agenda wherever we are - in our apartment buildings, our ILC's; in the offices of more grassroots-oriented disability advocacy groups; and right here, in cyberspace. We can do this by talking to each other, and educating ourselves about the economic forces that shape our experiences in society.

Most of what we hear about economics from the U.S. mainstream media is both boring and misleading. To hear NBC or the Rocky Mountain News tell it, economics is all about the Dow Jones industrial average. Is the market up or down? Is Wall Street happy? How is the gross national product... corporate profits... productivity... the trade balance? In this view of economics, the important people are people like Alan Greenspan and Bill Gates -- not you and me.

But there is another view of economics, one in which our lives have meaning. It's no wonder most of us tune out the news about economics. But we shouldn't ignore economics altogether. Instead, we should study and learn and educate ourselves and each other about the economic forces which truly do impact our lives. And we should explore and push forward new economic ideas -- economic ideas based not on markets, mergers and monopolies, but on justice.

Economic prosperity should not be measured by stock prices and industrial points, but on the well-being of the people, especially those in lower income groups. This includes working people, as well as those who cannot work, and those who could work if workplace conditions were more flexible, accommodating, and humane. For instance, people whose disabilities include fatigue could work part-time, or from home, if more employers allowed it, and if doing so would not bring loss of benefits. Similarly, single women raising young children could more easily support their families if more employers offered flex-time, job-sharing, and on-site child care; and if doing so would not bring loss of benefits. People who are poor for different reasons have more in common than we sometimes recognize.

I think we as people with disabilities need to start talking more about our economic lives. I think it would be interesting to hold discussion groups about economics and disability. Such a group could meet once a month, at a time and place convenient to those who are interested in attending. Each meeting could focus on a different issue or question. Discussion questions might include:

� What kinds of policies, attitudes, and assumptions limit our employability?

� What kinds of work do we do in our daily lives, for which we are not paid?

� To which economic classes do each of us feel we belong -- poor, working class, middle class, upper class, etc.? How has that changed over the course of our lives? What factors caused us to move from one class into another? How do our disabilities affect our class status?

� Analyze the annual budget of a disability charity organization. For each expenditure category, what is the impact on people with disabilities who are supposedly served by that charity? What does each category really mean? Who has power to control this money? Who benefits most from each expenditure category?

� Why are there economic disparities between disabled men and disabled women? Between between disabled men and non-disabled men? Between between disabled women and non-disabled women? How do gender and disability come together in our economic lives?

� What does it mean to us to receive government benefits? Is this an entitlement or a privilege? How do other people perceive us when we receive benefits? Are these perceptions fair? Why or why not? How do we perceive non-disabled people who receive other kinds of government benefits? Are these perceptions fair? Why or why not?

� Submit your own questions. We'll post them over the next few weeks.

We could learn a lot about each other, about ourselves, and about our community by sharing this kind of information.

If you're interested in organizing such a discussion group, ask your local independent living center or advocacy organization to provide meeting space, and to pay for printing and mailing of flyers.

Column from August 18, 1998

Attendant Services Must Support Independence, Not Agencies

It's been asserted many times, by me and others, that for people with significant disabilities, access to attendant services is the key to true independence. As a movement, we've put attendant services high on our list of priorities. Led by ADAPT, we've advocated and agitated for policy changes that would make personal assistance services available to more people, in more states. Currently, much of our movement's energy is going into supporting House Resolution 2020, a.k.a. the Medicaid Community Attendant Services Act, or MiCasa. This legislation would mandate a basic level of services, in all 50 states, designed to support and serve people with disabilities of all ages in their own homes, rather than forcing them to move into nursing homes.

I wholeheartedly support ADAPT's campaign to redirect federal funds away from nursing homes, and into community attendant service programs. While I believe that H.R. 2020 needs to be refined, so that it will not become another work disincentive that forces people to remain poor in order to qualify, I think it's a good start. At least it's national in scope. That would be a big improvement over our present state-by-state patchwork. It's appalling when people with disabilities in Tennessee are forced to move to Colorado in order to avoid institutionalization. It's even more appalling when people seek out serial killer Jack Kevorkian, because they're so afraid of ending up in a nursing home. To prevent these scenarios, I urge everyone to support legislation making in-home attendant services available to all people with disabilities who need them, regardless of diagnosis, age, geography, or income.

While we're keeping our eyes on that prize, however, I hope we will continue to push attendant service programs in the direction of real independence and consumer control. Here in Colorado, for example, we're lucky enough to have Medicaid-funded attendant services. (Of course, that "luck" only extends to people who are poor enough, and who have the right disability type, to qualify for Medicaid or one of the waiver programs.) People with significant disabilities can get up to eight or ten hours a day of personal assistance. This enables thousands of Coloradans to live and participate in their communities, to go to school, to work or volunteer, to raise their families, and to spend their time as they see fit.

And while this is certainly a more liberated lifestyle than confinement in a nursing home would be, Colorado's Medicaid-funded attendant services come with their own restrictions. These services must be provided by a state-certified home health agency, which in turn must hire state-certified "nursing assistants" (CNA's). To become certified, an individual must complete more than 80 hours of training by registered nurses. When CNA's go into the home of a disabled client, they are technically working under the supervision of a registered nurse in an office across town.

Some people regard Medicaid's training and supervision requirements as reasonable quality-control measures. But for the majority of people with physical disabilities, they impose unnecessary and onerous limitations on our ability to manage and supervise our own personal care services.

For all of my adult life, I've relied upon paid attendants to assist me in my activities of daily living. They help me with all the tasks that I would do for myself if I were not disabled -- dressing, showering, eating, cleaning house, driving, etc. Ever since I moved out of my parents' home, I have hired, trained, and supervised my own attendants, based on my own needs and preferences. I negotiated schedules and duties with them, and taught them to do things in the ways that worked best for me. Occasionally, a new attendant would try to presume that her method of transferring me into my wheelchair -- based on instruction she had received in some training program -- was better than my tried-and-true method. But I could almost always get them to learn the very valuable lesson that just like everyone else, people with disabilities are individuals who have different personalities, different techniques, and different needs.

Over the years, I have lived independently with the help of many different attendants. Along the way, I have been able earn a bachelor's degree, engage in advocacy, work at several different jobs, pursue my own free-lance writing and consulting business, make friends, travel, manage my household, live with my partner, do volunteer work, maintain close relationships with my parents and brother and sister-in-law, care for foster children, go to concerts, and so on. I have been able to do all these things not only because I had attendants to assist me, but also because I take personal responsibility for managing and supervising them.

In Colorado, I know many other people with disabilities whose lives are facilitated by having attendants. Yet at the same time, their lives are also constrained by the structures which provide their services. Because they depend upon home health agencies to hire and schedule their attendants, they are at the mercy of these agencies. They have to adjust their own daily schedules to accommodate the agencies. Some stay in bed later than they wish to in the mornings, anxiously awaiting the moment when the attendant finally arrives to help them go to the bathroom and eat. Others go to bed too early, sacrificing social and recreational opportunities.

Worse, I know some disabled individuals who put up with attendants who are unreliable, or disagreeable, or who do substandard work. Some agencies attempt to respect their clients' choices. They will, for example, remove a particular employee from a client's schedule upon request. Other agencies refuse to make such concessions. But even the most consumer-responsive agencies must, necessarily, give greater consideration to their overall operation than to individual preferences.

Part of the solution to these problems is to take attendant services out of the hands of the agencies. In general, funding should go directly to the disabled consumer to hire, train, supervise, and pay their own attendants. After all, this isn't brain surgery were talking about. Most attendant services are essentially non-medical maintenance tasks -- dressing, bathing, toileting -- which most consumers can self-direct. Does a non-disabled person need special training to dress, bathe, and feed herself? Of course not. And a person doing this for someone else does not need special training either. She or he only needs to listen to the directions being given by the person receiving the service.

Even more complex tasks, such as ventilator care, gastric tube feeding, and so on, can also be consumer-directed. A disabled person who uses this kind of technology on a long-term basis grows very accustomed to it. It becomes like an extension of one's body, its every quirk and imperative as familiar as one's own joints and organs. With such intimate knowledge, the disabled consumer is more than qualified to provide the training an attendant needs.

Most disabled consumers, I believe, could manage quite well without agency involvement. And there's a new program in Colorado which soon will let some people with disabilities do just that. The Consumer Directed Attendant Program will give "attendant management training," and the freedom to hire their own assistants, to eligible consumers who choose to participate. If nothing else, I hope that this program will successfully demonstrate that attendants do not need to be certified and supervised by nurses in order to provide high-quality services.

From everything I've said, you might conclude that I operate outside the restrictive requirements of the Medicaid system. But I don't. In order to do so, I would have to be independently wealthy, able to pay $100 a day, out of pocket, for the services I need. No; just like most people with disabilities that I know, I rely on Medicaid to provide these services.

But that doesn't mean that I'm willing to let Medicaid run my life. In order to maintain my autonomy, and to determine who comes in and out of my home, I still insist on hiring, training, scheduling, supervising and, when necessary, firing my own attendants. So far, I've been lucky enough to find home health agencies that were willing to allow me this freedom (it actually saves the agency a lot of work!), as long as we follow the Medicaid rules. When I hire people, I still have to hire CNA's, or people who are willing to go through the training program to become CNA's.

Granted, it's not always easy. Advertising, interviewing, checking references, training, and scheduling all take a lot of time and energy. Some people with disabilities feel intimidated by the prospect of taking on such a bundle of responsibilities. It's worth it to me, but it's not simple. And it doesn't guarantee trouble-free services. I've hired a few losers; however, these people rarely last more than a week. But despite the time it takes, and the headaches it can cause, and the fact that it means bucking the system, I wouldn't want to do it any other way.

What makes it even harder is having to follow rules and regulations devised by medical professionals, most of whom probably don't understand how a person with a significant disability lives independently. Hiring good attendants becomes more difficult when I have to look for an artificial, state-imposed qualification such as nurse aide certification. I would rather focus on real qualifications, like reliability, openness to learning, commitment to the idea of independent living, compatibility of schedules and personalities, and so on.

I have great respect for the individuals who work for me as attendants. But the qualities that I respect and value have nothing to do with their Medicaid certification. What makes them good attendants is a combination of their own personal, inherent attitudes and attributes -- such as sensitivity, dependability, intelligence, and a good sense of humor -- and the necessary skills that I have taught them.

With all the restrictions I've described, you would think that there would be hundreds or thousands of disabled Coloradans just chafing to get out from under agency-controlled attendant services. I do think there are many who will participate in the new program, especially if they can be assured of help and support in learning how to manage it all. But I also think that many Coloradans with disabilities have internalized the system's assumption that we can't handle the job of overseeing our own services, determining our own needs, directing our own care, and choosing and training our own assistants. I hope most participants will get over that idea. And I hope they will find, as I have found, that having more control over their attendant services will give them more control over their own lives.

Column from August 11, 1998

Who Profits from Disabled People's Poverty?

Within the disability-rights movement -- at least among some grassroots, outside-of-Washington activists -- more and more attention is beginning to focus on issues of economic justice. Many of us are becoming convinced that the key to our liberation lies not merely in "changing attitudes," but in critiquing and ultimately restructuring the economic system which keeps us financially poor, politically disenfranchised, and socially marginalized.

Despite the passage and sporadic implementation of the ADA, our unemployment rate has soared to an all-time high. Subsistence-level benefits are threatened with cuts, as right-wing zealots seek to transfer more resources from the poor to the rich. We often have to fight for basic health care.

As a community, people with disabilities are becoming poorer and poorer. This is bad news for those of us who are part of that community. But it's good news for those who grow rich by providing "services" designed to compensate for, and maintain, our poverty.

These people and organizations, these profiteers of dependency, are part of a massive Disability Industrial Complex -- a haphazard but potent network of both for-profit businesses and non-profit agencies which cash in on the "special needs" of people with disabilities. It includes our nation's systems of segregation and exploitation -- nursing homes, sheltered workshops, state institutions, segregated schools, and psychiatric hospitals. It also includes home health agencies, medical supply companies, transportation systems, large-scale supported employment providers, case management agencies, and so on. It includes the medical charities, such as the Multiple Sclerosis Society, and the Muscular Dystrophy Association (sponsor of the upcoming Jerry Lewis Telethon). These charities raise money "to help disabled people" -- money which most often enriches organizations controlled by non-disabled people, including pharmaceutical companies, research hospitals, corporate fundraising partners, and the charities themselves.

The Disability Industrial Complex also includes many of the well-funded advocacy organizations which have established themselves as representatives of the disability community. Too often, these organizations' high profiles result more from large budgets, clever advertising, and backroom political clout than from their commitment to, or their knowledge and experience of, real people and real disability issues.

Many of the so-called "special needs" targeted by disability service and advocacy providers are caused by our poverty, not by our disabilities. We could meet most of our real needs ourselves, without the intervention of professional do-gooders, bureaucrats, and gatekeepers, if we had adequate income and resources. Instead, we are held captive to the Disability Industrial Complex, which decides what's best for us, and how best to provide it. Nationally, these providers generate billions of dollars in revenues, as their reward for "helping" people with disabilities. Our "needs" fuel a huge sector of the U.S. economy. But, through a variety of mechanisms, policies, and rules, all -- or most -- of that revenue is kept carefully out of our hands.

Money makes the disability-service world go round. All that money swirls over, under, and around people with disabilities, but rarely can we get hold of much of it for very long. It enriches primarily people who are nondisabled, and already rich. It maintains a middle level of middle-class (also mostly nondisabled) service providers. But it scarcely touches people with disabilities themselves. If anything, it makes us poorer, by perpetuating our status as unemployed, welfare-dependent, service-dependent clients. The dollars flow through us, but not to us.

Martin Luther King, Jr., said, "Philanthropy is commendable, but it must not cause the philanthropist to overlook the circumstances of economic injustice which make philanthropy necessary." That's what has happened to people with disabilities: Charity has replaced economic justice.

So, how can we turn the tables, and reclaim the wealth that's meant to "serve" us -- the wealth that, instead, enriches providers who do not have our best interests at heart? Below are a few revolutionary proposals designed to do just that. Can the disability-rights movement get behind these ideas? We'll see...

Proposal #1: Demand that a portion of every disability agency's budget go directly to people with disabilities, through a system of contract set-asides. All agencies, public and private, should adopt policies mandating that for any large purchase or contract, the person responsible must make every effort to do business with a company owned by a disabled person. Does the agency need to buy stationary? hire a web designer? make travel arrangements for a large conference? contract with a script writer for a training video? For all of these services, and more, there are business owners with disabilities who are struggling to make a living. Rather than automatically doing business with nondisabled professionals, disability-service agencies should give preferred status to disabled-owned businesses.

Proposal #2: Every disability agency, public and private, should have an affirmative action program to maximize their hiring of employees with disabilities. Far too many disability organizations are staffed and controlled almost entirely by nondisabled people. Can you imagine going into the office of the National Organization for Women, and finding that men are in control? Or finding that the administration and staff of the NAACP are all white people? Both scenarios are inconceivable; yet the equivalent situation is commonplace in the disability field. This must end.

Some people might oppose these last two proposals, calling them "reverse discrimination." That misses the point entirely. Throughout history, people with disabilities have been systematically excluded from business and employment -- both in the general economy, and in the disability-service sector. Radical measures are needed to remedy that pattern of blatant exclusion and discrimination, which continues to this day.

Proposal #3: The United States should adopt a universal health care system which includes coverage both for medical care, and for the kinds of para-medical and non-medical supports that people with disabilities need in order to function independently and equally in society. Such a health care system should not be linked to employment. It should be available to all, regardless of employment or economic status.

Proposal #4: In order to help fund Proposal #3, stop using government funds to subsidize the charity sector of the Disability Industrial Complex. This is suggested by writer/activist Marta Russell in her new book, Beyond Ramps: Disability at the End of the Social Contract. Russell writes, "The nation needs to eliminate tax-free charity status, return the lost revenues to a democratic government to redistribute wealth in a democratic manner. That after all is what Constitutional 'promoting the general welfare' is all about."

I suspect that all of the above proposals will be controversial. But unless we confront the many ways that people with disabilities are impoverished, while others grow rich at our expense, we will never attain the equality that the disability-rights movement claims to be about.

Column from August 3, 1998

Necessity Is the Mother of Activism

I was leaving the hospital after a routine checkup. It had been a while since my last visit, so admissions had to update my records. The clerk quickly tapped in the information I provided -- and information she thought she knew. She printed the form and handed it to me. "Is this correct?" she asked.

Glancing over it, I nodded vaguely. Then I stopped short; under "OCCUPATION" she had typed "Disabled."

I gave the form back to her. "This is not correct," I said angrily. "My occupation is not 'Disabled.' I am a consultant, and a writer, and..."

"Okay." She briskly made the revision and reprinted the form.

I was furious. How typical of the medical field to reduce a person's whole identity to a single physical attribute! How ignorant to suppose that having a disability precludes any kind of work!

Later I thought, Maybe there was a bizarre logic to this incident. I had to take time out of my day to educate, to advocate, to rectify a wrong. It may have been a small, mostly symbolic injustice -- but it compelled me to take action. It put me to work.

Perhaps being disabled is a job, after all.

This reminds me of two young friends of mine -- bright, inquisitive twin girls. When they were about five, they began asking questions about my disability. I was happy to help them gain a practical, positive understanding. For a while they had a hard time pronouncing "disabilities." So they called us "people with responsibilities."

That always made sense to me. Having a disability does, inevitably, bring certain responsibilities. We have to take responsibility for removing barriers, resisting segregation and institutionalization, fighting discrimination, and educating others. None of us can do these things alone. We have a responsibility to join together and empower ourselves.

That process always presents difficulties, as any community organizer will tell you. It's never easy to get people to risk defying authority.

Organizing for change in the disability community is even harder -- and absolutely crucial. We have so many obstacles. Meetings around disability-rights issues often have low turnout. Some people don't attend because they can't get wheelchair-accessible transportation, some because the notice wasn't Brailled. Some stay away because sign-language interpreting is not offered. Still others don't show up because the issue hasn't been explained in a way they can understand. Many are locked away in institutions, and don't even know about the meeting. Many more have simply internalized the lesson that it does no good to try to change things, because systems have kept them dependent and powerless.

And yet we have to do it -- precisely because so many people are locked away, isolated, and held down by barriers. We have to work extra hard to break through all those barriers, and join together in a movement for change. We are people with responsibilities.

I once went to a meeting of a newly-forming group of people with disabilities. In discussing the group's purpose, several members spoke against engaging in any kind of activism. One person said, "I don't want to do protests and things. I just don't have that kind of personality."

Do we, any of us, really have the luxury of playing no part at all? I can remember a time in my own life when I thought I didn't need to fight for my rights as a disabled person. I ignored or denied my own experiences of discrimination, so I wouldn't have to confront the injustices and demand my rights. Perhaps I was more comfortable that way. Perhaps I thought someone else would do the job for me.

I now know that won't happen. I know the big-budget agencies, who purport to advocate "for" people with disabilities, are often run by non-disabled people who are out of touch with the disability community. Government agencies are too busy to enforce our civil rights. Businesses generally keep barriers in place as long as they can get away with it.

If we don't take on this "job" -- making a better, more supportive, more accessible world for everyone -- no one will. So this is a call to action: Do something.

Write letters to the editor, or to your Congressperson. Lobby. Join a board or a commission, or even run for office. Speak or write or sing or paint; change the world one heart at a time. File a lawsuit. Whatever.

I know it's summer. So have fun! Relax. Travel.

But be ready to work.

Column from July 28, 1998

Don't Trust the Social Security Administration with Important Work Incentive Programs

In a previous "Crip Commentary" column, I came out in favor of S. 1858, also called the Work Incentives Improvement Act, sponsored by U.S. Senators Jim Jeffords (R-VT) and Edward Kennedy (D-MA). I have continued to support this proposed legislation, and urged Colorado Senator Ben Nighthorse Campbell to sign on as a co-sponsor. (He remains non-committal.)

However, I cannot remain silent about some very serious concerns that I have about this bill. My doubts do not relate to the bill's goals, design or methods. It aims to enable more people with disabilities to become employed, without losing essential health care benefits, and without automatically triggering a process that would declare the individual "no longer disabled."

These are good ideas, needed now more urgently than ever, considering the just-released results of a Louis Harris poll. The survey reported that only 29 percent of people with disabilities are employed, compared with 79 percent of nondisabled people. (This situation is even worse than in 1986, when 33 percent of disabled people had jobs.) The report went on to say that 34 percent of adults with disabilities live in a household with an annual income of less than $15,000, compared with 13 percent of nondisabled adults. It did not speculate on the causes of unemployment, but other studies have found that fear of losing benefits, combined with a lack of adequate and appropriate health care coverage in the private sector, are two major factors.

But my reservations about proposed legislation persist. The new work incentive rules proposed by Jeffords-Kennedy would be implemented by the Social Security Administration -- the same agency which is responsible for implementing all existing work incentive rules. One of the best ideas in recent decades was a program called PASS -- Plan to Achieve Self-Support. PASS is supposed to give people with disabilities a chance to prove that they can work, if allowed sufficient time and the opportunity to purchase necessary employment-related products or services -- such as job training, education, vehicles, computers and other equipment. In administering the PASS program, SSA has proven itself to be irrational, irresponsible and, at times, vindictive.

Does that sound like a strong statement? Not strong enough to describe some of SSA's actions toward people who were following the rules, trying to become employed.

A few examples:

*An Ohio woman, disabled by asthma and receiving Social Security Disability payments, submitted a PASS proposal to set up a business. As the program's regulations require, she outlined all the expenses she expected to incur. This meant she would be allowed to "set aside" income and resources to pay for those expenses. Her countable income would therefore remain low, as long as she was pursuing her employment plan, and she could continue receiving benefits. Her plan was verbally approved by one SSA employee, and her benefit check continued to be direct-deposited into her bank account. However, things went awry when another SSA employee called the beneficiary late one afternoon to tell her the PASS proposal was not approved after all. She was told to repay the money -- but she had already reimbursed herself for some office supplies, after turning in the receipts and obtaining approval for the expenses. Faced with the threat of being declared "out of compliance" with her plan, and being charged with a major overpayment which she could not afford to repay, the beneficiary endured major stress which aggravated her asthma. According to the beneficiary's advocate, the problem was not resolved until six months later.

*Another Ohio resident, a man with a physical disability, submitted a PASS proposal to study computer-aided drafting. The regional SSA office approved his expenses for transcription, schoolbooks, and a computer. But later, local SSA workers ruled against the computer -- even though a doctor verified that he required a specially-adapted computer in order to pursue his studies. The student, unable to use the school computers because of his disability, began to fail his classes. Due to his poor performance -- which was caused, at least in part, by SSA's arbitrary decision -- his PASS was ended. This left him without any funding to make his car payments, and his van was repossessed.

Though it's hard to attribute motives or emotions to a massive, bureaucratic organization, I believe there is a sort of "corporate culture" entrenched in SSA, which gives rise to certain attitudes and behaviors. Employees' actions often seem to be based on negative assumptions about people with disabilities. Some seem to suspect that we only use work incentive rules to jack up our own benefits, with no intention of actually obtaining employment. Others appear to doubt that people with disabilities really possess employment potential. Some SSA employees even seem to resent the idea that one of their "clients" might aspire to a job that pays better than the bureaucratic posts they themselves hold.

When I've said as much to SSA administrators, some have said that I am paranoid, or that this is all in my imagination. But I base these speculations directly on the actions of many of the caseworkers and claims representatives that I've encountered. And I've talked with hundreds of other beneficiaries who've had similar experiences with SSA employees.

Doug Brunkow, a PASS consultant and advocate in Denver, says, "I would say that 90 percent of the people I wrote plans for were discouraged by the Social Security Administration one way or another."

My own attempt to participate in a work incentive program turned into a surrealistic, Kafkaesque nightmare.

Aiming to establish a viable consulting business, I submitted a proposal to "set aside" earnings and disability income for three years, to purchase office supplies, make payments on a wheelchair-accessible van, and subsidize other necessary costs. This plan was approved, and things went along fine for about the first year and a half. I carefully documented all my expenditures, and received positive compliance reviews. Halfway through my three-year plan, I submitted a fairly routine request to continue pursuing my PASS plan.

Just then, the rules suddenly changed. Then-SSA Commissioner Shirley Chater shut down the PASS program while new policies were being developed. (This was in early 1996.) I found myself lost in a bureaucratic limbo, waiting for a response to my extension request. I waited... and waited... and waited. Months went by, and I heard nothing. If I'd gotten an approval, I could have continued to build my business. If I'd gotten a denial, I could have started the appeal process. Instead, I got silence.

That silence lasted for almost a year. Finally, I received a denial. The reason given was, "You can already support yourself." But there was no explanation offered for this, no formula on which the determination was based. I began trying to appeal, but without any clear grounds for the denial, this wasn't easy. I'll spare you all the gory details. Suffice it to say that it took another half year to clarify and resolve the questions SSA had about my plan. During that time, I spent nearly as much time and energy dealing with SSA as I did actually developing my business and working. And, due to SSA's inexplicable delays, I came perilously close to losing the Medicaid coverage that pays for my attendants, oxygen, and other life-sustaining services.

Finally, after a 15-month struggle, all the questions were resolved. I felt vindicated: My extension was fully approved, retroactive to when I submitted it. At this point, I had about three months left on my PASS plan. Determined to succeed, I plunged into my work.

As my approved PASS period drew to a close, I presented evidence to SSA that I was now able to support myself on my own earnings, without my monthly disability check. I asked SSA to declare my PASS successfully completed, and to terminate my payments.

Had they agreed to this, I could have saved the taxpayers the amount of my monthly check. I could still have kept my necessary Medicaid services, under a federal program called 1619(b), available only to significantly disabled people who enter the workforce. I could have worked hard, continued to increase my earnings, paid more in federal income taxes, and contributed more to the economy.

But instead, SSA responded by telling me: "You cannot support yourself." Remember, this was the same agency that, a year earlier, when I still had major business debts, had told me that I was already supporting myself. Now that I had steady (though not spectacular) income, and little remaining debt, they insisted on calling my PASS plan a failure.

As a result of SSA's decision, and in order not to lose the services that enable me to live independently, I had no choice but to apply for a state Medicaid waiver program. Unlike 1619(b), this state program has strict income limits; and unlike PASS, this program offers no option for transitioning to employment and self-sufficiency. So I am forced to work less, to keep my income low. So much for work incentives.

Given SSA's track record, I would urge members of Congress to include oversight and accountability as essential aspects of any new work incentive legislation. Congressional hearings should be held to uncover the depth of SSA's abuse and mismanagement. Current and former PASS users should be brought to Washington, to testify about how their efforts to work toward employment were sabotaged. Many of us could tell stories which would shock the U.S. public at least as much as last year's hearings about the Internal Revenue Service's punitive procedures.

The Social Security Administration, even more than the IRS, is a rogue agency, out of control and answerable to no one. So far, SSA has managed to escape public scrutiny. This is because, in carrying out its most visible function -- cranking out monthly checks for the nation's retirees -- it does just fine. But when it comes to administering programs designed to aid disabled people's quest for economic self-sufficiency, SSA fails miserably.

Column from July 20, 1998

Time to Celebrate (and Litigate) the Americans with Disabilities Act

Question: How many lawyers does it take to enforce the Americans with Disabilities Act?

Answer: Thousands. But they can't do it alone. They need us, people with disabilities who are willing to take action to secure our civil rights. The best ADA lawyer in the world can't do squat without a plaintiff.

When Congress drafted the ADA, it placed the responsibility for enforcement squarely in the hands of the grassroots disability community. It's up to us to identify discrimination, and to work against it using the tool of law. True, the federal government has some enforcement authority. But the feds have largely dropped the ball. As Mouth magazine recently revealed in a thorough, scathing exposé, the Department of Justice has failed miserably in its ADA enforcement duties. (By the way, if you don't read Mouth regularly, it's time you started. To subscribe, write to: Mouth, 61 Brighton Street, Rochester, New York 14607-2656.)

With so little governmental support, often the best enforcement option is a lawsuit. Ultimately, case law is going to define the ADA's parameters and possibilities. Therefore, if we can get good lawyers to take good cases to court, we can help to clarify and expand the law's expectations, requirements and benefits.

Despite the fact that disability-rights law is one of the least lucrative legal specialties, there are some good lawyers around who are willing to take these cases. I know four or five in Denver alone, and several of them have told me that they can't find enough plaintiffs who are willing to follow through on discrimination suits.

Why is this, I wonder? I know it's not because all barriers and biases have vanished. I know it's not because people with disabilities don't really want to shop, dine, play, work, and travel equally with other citizens.

I think it's simply because filing lawsuits, providing evidence, going through depositions, testifying, and so on is a lot of work. It's a hassle. Even though in the end, the benefits may be far-reaching -- like, making the world a better place for everyone -- in the beginning the rewards are a bit hard to see.

Goddess knows, people with disabilities have enough work to do, just managing our daily lives. We constantly have to plan, adapt, improvise, self-advocate, instruct, explain, and educate. (Need I bother to add that, however productive and exhausting this work might be, it's not the kind of labor that earns a salary?) Given this considerable workload, it's no wonder that we avoid taking on the additional burden of filing lawsuits.

But whenever we can, we must. As the first generation to have the protection of the ADA, we owe it to future generations to help shape this still-young law into a force for justice. Business owners and employers have already had six years, since the ADA's mandated implementation, to remove barriers, modify policies, educate themselves and their staffs. There's no excuse for discrimination against people with disabilities to continue today. But it does continue. We all know that. And we are the people who can stop it.

As a fairly new law, the ADA is far from static. Its implications are still being explored in the courts, in the media, and in our community's own conversations. Fascinating new developments occur every week or so. Two recent examples stand out, for having stirred so much debate, even among people with disabilities themselves.

Look at the case of Casey Martin, the PGA golf pro who sued for the right to travel the course in a golf cart. Martin has a circulatory disorder which prevents him from walking long distances. He could make the putts, he just couldn't walk the course. Martin won his case.

Many of us were thrilled to see this unprecedented development -- the ADA opening doors to opportunities in professional sports. But Martin's victory also angered a lot of people -- including, to my surprise, a few vehement disability-rights proponents. These individuals saw Martin as a member of an advantaged class -- wealthy, educated, free of much of the stigma that plagues some people with disabilities. Further, they saw him seeking to use a civil-rights law for a frivolous purpose -- to play a game. The Martin decision, they argued, was of no use to the larger disability community, which faces such daunting problems as unemployment, poverty, and confinement to the margins of society. These critics saw Casey Martin's victory as evidence that the ADA's protection was available only to the privileged elite.

Another important recent decision came last month, in the Yeskey case. In that case, the Supreme Court ruled that prisons are not exempt from complying with the ADA. Prisoners with disabilities, the Court said, should be afforded the same protections against discrimination as other people with disabilities.

Again, many activists welcomed a decision which reinforced the essential fairness of the ADA. But, again, a few didn't. Some, not being personally acquainted with any prisoners, simply dismissed it as irrelevant. Others went so far as to say that prisoners, by virtue of having broken some law, don't deserve civil rights. Now, conservative senators are introducing bills to exempt prisons from the ADA's requirements. I'm concerned that they'll succeed with little opposition. I have actually heard some disability leaders say that they would not want to be publicly identified as promoting "rights for prisoners," even prisoners with disabilities.

Despite differences in their details, the Martin case and the Yeskey case have one profound principal in common: The ADA in particular, and civil rights in general, do not and should not depend on public approval, bias, or sentiment. This gets to the heart of why the disability-rights movement so adamantly supports rights over charity. Before the movement managed to get civil rights laws passed, disabled people could only hope to obtain assistance or opportunities through charity. This is still partly true today, especially in the area of health care. Telethons beg money to provide medical services and equipment which, under a fairer health care system, would be a matter of right.

Under the charity model, getting what you need depends on who you are, and how the public can be made to think and feel about you. It helps if you're small and cute and helpless, and/or brave and cheerful and determined to pull yourself up by your own bootstraps. Moved by sympathy or admiration, people decide that they like you; and that therefore, you deserve to get the help you need.

Under the civil rights model, in contrast, you get non-discrimination protection regardless of who you are or how you're viewed. (Remember, I'm talking models here; these ideals don't always translate into reality.) You're covered, even if you don't really seem "disabled enough." You're covered, even if you look like you're doing all right financially. You're covered, even if what you want is the right to play the most boring game ever invented. You're covered, even if you're a convicted felon.

With the ADA in place, individual or collective prejudices -- such as my attitude toward golf -- are not supposed to matter. All that matters is what the statute says, in relation to the facts of the case. This is also called the "rule of law," and it's something for which we Americans (please excuse my rare display of patriotism) should be both grateful and proud -- even though, at the international level, we violate it all the time (phew, I'm back!)

Besides lawsuits and controversies, there's another side to this ADA thing too. It was a landmark victory of activism and coalition-building over passivity and division. It's something to celebrate! This Sunday, July 26, marks the eighth anniversary of the signing of the ADA. Since 1990, that date has come to represent disability community pride and solidarity. For many people with disabilities, ADA Day is our Stonewall, our Juneteenth, our Cinco de Mayo. It recalls past struggles and triumphs, and it unifies people to work toward greater equality, independence, and opportunity.

Celebrations will be held this Sunday, July 26, all over the country. If there's not one in your area, hurry up and organize one! If there is, be sure to go. Invite a friend or neighbor who has no idea what the ADA is all about. Invite some kids, so they'll grow up fully aware of it. Invite every politician you can find, but don't let them take over the microphone. Make them listen!

Celebrate, participate, educate and agitate. Oh yeah, and litigate!

Column from July 13, 1998 --

"Disability Renaissance Brings Art and Culture to the Forefront"

Fifty years from now, I wonder whether we will look back on the 1990's as the time of the "Disability Renaissance" -- a time of prolific artistic and cultural expression by people with disabilities.

Remember the Harlem Renaissance? During the 1920's, the African-American community pulsed with artistic activity. As Black Americans came together in urban areas, and spurred one another to creative innovation, new voices, new forms, new stories burst onto our nation's cultural landscape. New artists emerged: Zora Neale Hurston, James Baldwin, Langston Hughes, Ida B. Wells-Barnett, Hale Woodruff, Jacob Lawrence, Lois Mailou Jones, and many more. These artists expressed the outrage of enslavement, the pain of violence, the power of family, the excitement of the northward migration, the challenge of urbanization, and innumerable individual and collective visions. Their art, literature and music helped to illuminate and enliven America.

Something similar is happening now in the disability community. People with all kinds of disabilities have gradually come together, over the past thirty years, to demand civil rights and support services. We are beginning to become a powerful political force. But no community can survive and thrive for very long solely on the strength of lobbying, legislation, litigation, and protest. As important as those things are, something more is needed to feed a people's quest for identity and autonomy, and to change a minority group's relationship to the larger society.

That something is art. Art allows us to articulate more than we ever can with argument.With art, we can state not only what we want, but who we are. We can explore our own souls and psyches, even as we reveal our humanity, our diversity, our experiences and our aspirations to others.

I'm not saying that art should replace activism. On the contrary, I think the two are mutually necessary. They always have been in my life. Much of my poetry is about protest. And some of the most memorable, most effective demonstrations I've been to were ones that included music, drama, and poetry.

This last weekend, I was lucky to experience two impressive projects arising from the current "Disability Renaissance." Though very different from one another, both projects highlighted the creative talents of artists with disabilities.

On Friday evening, I attended an opening for a new art show called "Disability: Reclaiming the Self Through Art." Along with around a dozen truly accomplished artists, a couple of my digital artwork pieces are on display, including the Shamaness character who greets you at the top of this page. (If someone had forecast, even six months ago, that I'd be included in an art show, I'd have laughed. Visual art is a completely new adventure for me.)

The art show is presented as a conscious effort to put the work of artists with disabilities front and center. Too often, such work is relegated to the margins of the art world, viewed as "art therapy" or otherwise "special." Most of the artists in this exhibition possess genuine talent, and deserve widespread recognition. Some have already earned it. Painters Doris Van Bebber and Carol Knapp, for instance, both boast long, successful careers. Still, many artists would agree that they encounter barriers to mainstream acceptance.

Some people question the wisdom of a show like this one. Doesn't it just segregate us further? Do we have to be artists with disabilities? Can't we just be artists?

But I think there's value in presenting this work in this way. It's not just about providing opportunities to artists who might not otherwise have the exposure they deserve. It's also about providing something unique and interesting to the world. In her introduction to the exhibition catalog, noted art critic Lucy R. Lippard speculates that "... the world looks different from a wheelchair, from crutches or a cane, from darkness, silence, confusion, or pain." Both because of their unique perspectives, and because they have been working for so long outside the mainstream, artists with disabilities have something important to offer the art world. "Many so-called 'outsider' artists working from other viewpoints are," Lippard writes, "providing the meaning that art needs in order to fulfill its real purpose -- communication."

"Disability: Reclaiming the Self Through Art" runs through July 26 at the Smokebrush Gallery, at 235 South Nevada Street in Colorado Springs. The gallery is open Monday through Friday from noon to 5:00 p.m. Admission is free.

The night after the art show opening, I saw a different kind of art. I attended a performance of "The Boyfriend," a musical comedy presented by Denver's Physically Handicapped Amateur Musical Actors League, or PHAMALy. Founded in 1989, PHAMALy's goal is to "showcase the talents of performers with disabilities."

I've tended, at times, to be critical of PHAMALy -- primarily because of the hackneyed material they often choose to perform. I bemoaned PHAMALy's preference for cornball theater to a friend last week. Why, I wondered, couldn't the group select something just a bit more relevant to the concerns of the contemporary disability community? You know, something political. He replied that for a group of actors with disabilities to go in front of an audience and perform those hokey, familiar Broadway standards is, in itself, a political statement.

Partly because of my friend's response, I watched the performance Saturday night with my mind opened a bit further than usual. And, though still skeptical, I thoroughly enjoyed it. Of all of PHAMALy's shows, "The Boyfriend" has, by far, the silliest plot and the most frivolous characters. But the play is also full of jazzy choreography, physical comedy, flamboyant flirtation, and boy-girl interactions charged with sexual chemistry. The actors embrace this material with enthusiasm and confidence. They pull off the slapstick and the sensuality with equal panache. This, I think, is the heart of PHAMALy's artistic statement: that physical disability and physical grace can coexist in the same body.

Pretty subversive stuff! Society tries to teach people with disabilities to be quiet, cautious, clumsy, asexual, and ashamed of our bodies. The PHAMALy performers didn't learn these lessons -- or maybe they managed to unlearn them somewhere along the road to show biz. Instead, they enjoy their bodies -- wearing elegant or slinky costumes, dancing a seductive tango, doing pratfalls, belting out those corny songs.

Still, one of these years, I hope to see PHAMALy lend its considerable talents to something a little more substantial -- maybe even radical. Strutting their stuff out there on the stage, these actors show that art can be a vehicle not only for expression, but for liberation.

"I am not sick. I am broken. But I am happy as long as I can paint."

--Frida Kahlo

Check out the following Disability Culture links:

What is Disability Culture? To begin understanding what it's all about, read this very informative article written by poet/scholar/activist Steve Brown, co-founder of the Institute on Disability Culture.

Very Special Arts - Despite its name, this organization does some great work to promote access to artistic opportunities for people with disabilities. One of their most exciting projects will be an international conference, next May/June, called "Art and Soul." It will bring hundreds of artists from around the globe to Los Angeles. I wanna be there!

The Electric Edge - the electronic version of the excellent magazine The Ragged Edge. The Edge covers politics, art, and everything in between.

John Callahan's cartoons - As a feminist, I hate him. As a crip, I can't get enough of him. What can I say? Decide for yourself.

Van Gogh - Not the painter; the rockin' musical group.

Column from July 6, 1998 --

History Matters

Last week, the disability-rights movement won a small but far-reaching victory over the forces which strove to keep President Franklin Delano Roosevelt's physical disability a dirty little secret.

Under pressure from several disability organizations, and bombarded by letters from people with disabilities and their families across the country, the National Park Service finally agreed to add a new statue to the new FDR Memorial. The Memorial, which opened last year, had managed largely to ignore the fact that Roosevelt was a president with a disability. The new statue will show Roosevelt sitting in a wheelchair -- a position he occupied during the entire time that he occupied the position of Chief Executive.

Except, that is, in public. With strenuous, well-disguised support from his aides, and with the full cooporation of the Washington press corps, Roosevelt protected the U.S. public from knowledge of his impairment. His efforts to cover this truth have been passed down to the present day, a legacy of shame and deception. Some people, including several members of Roosevelt's family, insisted that the Memorial should follow this tradition, and keep his disability invisible. David Roosevelt, the President's grandson, has quoted Eleanor Roosevelt as saying that her husband would not have wanted the condition which he so carefully concealed to be memorialized for posterity.

So what? We rarely allow figures from our past to control their historical presentation. Thomas Jefferson probably did not want us to know that he owned slaves. John F. Kennedy would likely prefer that we remember him as an unequivocal supporter of civil rights for African-Americans, rather than as a pragmatic manager of a domestic crisis. Nevertheless we persist in probing these truths, to learn what we can about who they were, and who we are.

Besides, times have changed, and many of us were no longer willing to tolerate the lie of Roosevelt's able-bodiedness. This lie serves not only to obscure a historical fact, but to exclude those of us with disabilities from our rightful place in history.

Outside the disability-rights movement, it seems, few people understand the true significance of this decision. The Associated Press quoted one FDR Memorial visitor's reaction to the decision: "If they wanted a memorial to the physically impaired, then they should build one. I don't think Roosevelt was a spokesman for the physically impaired." This response seems to assume that disability is a realm separate and distinct from everything else. Instead, disability must be understood as an integral part of politics, the economy, history. If it is not, people with disabilities will never succeed in ending our widespread segregation from society.

Even within the movement, there are some people who wonder why so much advocacy energy would be devoted to something that seems merely symbolic. Aren't disabled people's present-day problems -- continuing discrimination, rampant unemployment, the rationing of health care, and so on -- more important than the representation of the past?

But the past cannot be so neatly severed from the present. Our understanding of history profoundly influences our approaches to current issues.

To acknowledge the simple truth that President Roosevelt never took a step unaided during his term in the White House, and used a wheelchair which he kept carefully out of camera range, is to accept something that was absolutely unacceptable 50 years ago. It is to concede that disability is not synonymous with frailty, incompetence, and dependence; but that it is simply part of the human condition, requiring adaptation and support, not surrender.

The fact that Roosevelt found it necessary to hide his disability is, in itself, a fascinating historical reality. He and his advisers must have believed that a nation in crisis could not accept a leader whose physical condition had been compromised. Everyone knew that Roosevelt had had polio; this was not a secret. But apparently, the citizenry needed to believe that he had emerged from his bout with the disease unscathed, unaltered, stronger than ever. For this is what America hoped for itself: that the pressures of the Great Depression, the Second World War, rapid industrialization, and other historical events would test and strengthen the nation, but would not fundamentally change it. We Americans seem to like to believe ourselves immune from external forces, from nature or history or even chance. We like to believe that we can go on forever, just the way we are, always in control of our destiny. We don't want to contemplate the possibility that our power as a nation could diminish.

In the 1930's and '40's, the President of the United States was more than a political executive. He was the human manifestation of American power and ideals. And disability was more than the practical problem of having an impairment which limits one's physical functioning. It was the bodily manifestation of human vulnerability. It was incontrovertible evidence that we as people, and as a nation, were subject to forces beyond our control.

As our national representative, the President was required to be free of flaw, weakness, or the kind of human failings that we have reluctantly come to accept in our current leaders. In Roosevelt's case, this meant that evidence of disability had to be carefully, elaborately concealed. The President could not demonstrate immobility, awkwardness, or fatigue. For by doing so, he would undermine the view America wanted to have of itself.

And what about today? Have things changed? Is the impending installation of a statute depicting Roosevelt in his wheelchair evidence that we have, as a nation, come to accept disability as the normal phenomenon that it is? Are we a stronger society now, better able to tolerate and integrate diversity? Have we matured to the point where we know that we are in fact human -- part of nature, part of history, part of a changing and unpredictable world?

Perhaps. More likely, what has changed is that people with disabilities have developed a political consciousness. We have a sense of identity, an idea of ourselves as a community within American society. We have come to identify the sources of our oppression -- not in our bodies which operate differently from other people's, but in the barriers and prejudices which confront us. Armed with this relatively new understanding, we insist on bringing disability out of the closet. We reclaim history, exposing the existence of disability in all times and all places, past and present. And we wait for our fellow citizens to accept what they can no longer deny.

Now, with this controversy more or less resolved, I hope we -- the disability-rights movement in particular, society in general, and academia somewhere in between -- will take the opportunity to further explore questions raised by our history. We have so much to learn by studying the impact of people with disabilities on history, and the impact of history on people with disabilities.

Recognizing the key role of history in confronting our present and charting our future, several individuals and groups have launched projects to probe the historical context of disability issues. One is the Disability Social History Project website, a well-designed site rich in valuable historical information.

Another is "Beyond Affliction: The Disability History Project," a four-hour radio report which aired on 153 National Public Radio stations (not Denver) in May and June. The producers of "Beyond Affliction" say the series was "designed to move the general public beyond the 'affliction myth' and into a more authentic perception of the disability community, past and present." This ground-breaking series explored changes over time in the charity business, employment programs for people with disabilities, the militant disability movement pursuing an "overdue revolution," and medical ethics debates about prenatal and genetic testing.

Column from June 29, 1998 --

Proposed Bill Would Remove Some Barriers to Work for People with Disabilities

What would you do if taking a job meant it became harder, not easier, to pay your bills?

What would you do if your new salary made you ineligible for health services that that are essential to your quality of life -- or even to your life itself? What if your employee health plan did not cover the services you need?

Would you work?

Probably not. Or if you did, you would pay a high price. You would be staking your future against stacked odds, where your every effort resulted in fewer choices, less disposable income. The only rational choice, in such an irrational universe, is to avoid employment.

This is the universe in which many people with disabilities live. This is why our unemployment rate soars beyond any other U.S. minority group's. Many disabled people -- even the ambitious and the talented -- are caught between a genuine, inescapable need for a safety net, and a desire to swing free of a net that has become too rigid, too entangling.

A typical example: Sue, a 24-year-old woman with a college degree and a physical disability, lives independently in a subsidized apartment. Three times a day, attendants come to her home to help her shower, dress, transfer to her wheelchair, use the toilet, and exercise.

Sue does part-time volunteer work, but has never worked for pay. She would like to, and some of her co-workers have encouraged her to apply for paid positions within the agencies where she volunteers. But she fears that if she did so, she could lose everything.

Sue lives on $492 per month from Supplemental Security Income (SSI). She believes she could earn more than that, and she wouldn't mind losing the monthly check. But along with SSI comes Medicaid, which pays for Sue's attendant services. If she lost her Medicaid eligibility, by earning a salary higher than the SSI amount, she wouldn't be able to get out of bed in the morning. She might be forced into a nursing home. Even if she got a job that came with health benefits, it would not cover the kind of ongoing, daily personal care services that Sue relies on.

Over the years, a few loopholes have opened up for people with disabilities who are savvy enough to find them. Losing cash benefits doesn't always mean losing Medicaid services. Sue might qualify for a federal program called 1619(b), which allows some Medicaid recipients to retain their eligibility after becoming employed. Unfortunately, Sue's been unable to get any reliable information about this program from her local Social Security office. She's asked around, and no one else seems to know how to advise her. Without a guarantee of continued attendant services, Sue is unwilling to risk paid employment.

As a Colorado resident, Sue may also be eligible for new state "waiver" program offering partial Medicaid coverage for people with disabilities who become employed, and who require Medicaid services such as attendant care. This program, which the state legislature passed last year, is in the process of being set up.

Still, the majority of Americans with disabilities continue to battle, or surrender to, the ill-logic of the benefits system. Our cultural assumptions about employment -- that hard work brings rewards, that occupational success enhances one's life overall -- don't always hold true in an economy increasingly controlled by giant, border-crossing corporations. There are plenty of people, the "working poor," stuck in low-wage part-time jobs, barely able to get by. But for many people with disabilities, the situation is even more absurd: Employment brings penalties. Their financial success is in inverse proportion to their occupational performance.

Finally, after years of advocacy on the part of disability activists, policymakers are beginning to take note of these employment barriers. One of the more promising federal initiatives in some time is Senate Bill 1858, which has been introduced by Senators Jim Jeffords (R-VT) and Ted Kennedy (D-MA). Also called the Work Incentives Improvement Act, the law would actually encourage people with disabilities to enter paid employment, rather than discouraging them by threatening the loss of essential services.

Under S. 1858, new employees with disabilities would be entitled to Medicare coverage, which helps pay for medical services. This provision would be crucial for people whose employment does not come with medical benefits, such as part-time workers, and those working for small companies.

In some states -- those states which can appreciate tax-saving potential -- certain Medicaid services would be available to disabled people who work, on a "wrap-around" basis. This means that it would only offer those services which are unavailable through either private insurance or Medicare, such as attendant care, prescription medications, and medical equipment.

This is no free ride. As the employee's salary increases, the law would require him/her to begin paying Medicare and/or Medicaid premiums, on a sliding scale based on income. Disability advocates fully support this requirement. Almost everyone I know would be delighted to pay a reasonable amount for the services they need, if they had the opportunity to do so.

S. 1858 contains other positive changes. In order to provide accurate, useful information -- currently a real rarity -- the bill would fund "work incentive specialists" in Social Security offices and community-based agencies. If implemented correctly, this investment could pay off in a big way. Helping someone move from lifetime dependency on Social Security benefits to productive employment will not only save big bucks for taxpayers, it will also transform many lives, workplaces, and communities.

While S. 1858 would lay a good groundwork, our nation still has far to go in offering employment opportunities and economic justice to Americans with disabilities. We need to make education, training, and adaptive equipment available to more people. We need to make health care and support services available to everyone, regardless of disability or employment status. We need to break people free from nursing homes and other institutions. To achieve equality in the workplace, people with disabilities need equality in every other aspect of life.

But S. 1858 is a good start. Every senator, Democrats and Republicans, should be encouraged to sign on as a co-sponsor. The senators should hear from anyone who has a disability -- those who work, those who want to work, and those who are afraid to try.

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