Laura Hershey: Writer, Poet, Activist, Consultant Rotating Header Image

Disability Advocacy and Politics

Laura’s Labor Day Weekend Column

Sep 4th, 2010
by admin.
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Labor Day means different things to different people.

The Labor Day Telethon

For me, it’s hard (try as I might) to escape the association between Labor Day and the Jerry Lewis Muscular Dystrophy Association Telethon. Though it’s been several years since we’ve organized a direct action protest, the Internet continues to provide us with opportunities to educate and inoculate people against the Telethon’s pity paradigm.

The Internet also provides us with more evidence of the hypocrisy of a man who claims to be a “humanitarian” (and of a shallow showbiz industry that validated that title with a 2008 “Humanitarian Oscar Award.”) During a recent interview on Inside Edition, Jerry Lewis avowed that he would punish Lindsay Lohan physically for her recent transgressions. “I’d smack her in the mouth if I saw her. I would smack her in the mouth and be arrested for abusing a woman! I would say, ‘You deserve this and nothing else’ — whack! And then if she’s not satisfied, I’d put her over my knee and spank her.” If you want to torture yourself by watching it for yourself, here’s the video clip.

(Some people, perhaps tired of the media coverage of Lohan’s nonsense, seem to find Lewis’ statements funny. But my philosopher crip friend Joe Stramondo puts them in perspective: “Jerry Lewis again uses a narrative that masquerades violence/oppression as ‘help’ by obscuring it with pity. This time it’s women who he pities. So, I guess sexism and ableism have something in common for him.”

I would recommend avoiding Jerry Lewis and the Telethon altogether this weekend. For an edifying alternative, check out my friend Mike Ervin’s sassy response to the Telethon. He made a video called The Kids Are All Right (long before the current lesbian family dramedy), about the activist group Jerry’s Orphans.

By the way, check out the Denver Post on Tuesday for a spot-on column describing disability activists’ objections to the Telethon.

Labor Force Diversity (Including Disability)

This Labor Day, too many people are still jobless, and the situation is worse for people with disabilities. In August 2010, only 22 percent of people with disabilities were participating in the labor force, while 70.2 percent of non-disabled people were in the labor force. The unemployment rate for those with disabilities was 15.6 percent, compared with 9.3 percent for persons with no disability.

There are many complex reasons for this disparity. Certainly one reason are the negative attitudes that some employers and coworkers have toward people with disabilities. Even those who are not actively hostile to disabled folks may not have considered or understood the need to actively recruit, hire, and accommodate workers with disabilities.

To try to address the lack of awareness, the U.S. Department of Labor (which provided the above statistics) sponsors National Disability Employment Awareness Month (NDEAM). This year, I have a direct role in this effort. A few lines of my poetry, along with a piece of my digital art, appear on the official poster for NDEAM. The poster is available for FREE to employers, advocacy organizations, schools, or anyone else who requests it. Even cooler, it’s available in eight languages, including Navajo and Lakota. Go to the DOL website at http://www.dol.gov/odep/pubs/ndeam2010poster.htm to order or download your poster(s). Did I mention they’re FREE?

Can a public awareness campaign like this make a real difference in improving disabled people’s employment prospects? Who knows? But I think the poster turned out beautifully, and I like the emphasis on disability as a part of diversity. I also know that the DOL under President Obama is being managed by some hard-working, progressive people, including Secretary Hilda Solis; and Kathy Martinez, Assistant Secretary for the Office of Disability Employment Policy.

(And I should probably add that my comments above about MDA and Jerry Lewis have no official government endorsement!)

Labor in Service of Independent Living

Labor Day celebrates workers, and my favorite workers are those who support people with disabilities in living in the community. Call them attendants, personal care assistants (PCAs), personal assistants (PAs), home health aides, helpers, even certified nurses’ aides (CNAs) – whatever you call them, they are crucial to the disability rights movement.

Good attendants do more than just enable a disabled person to live outside an institution. They allow us to live a life of maximum independence, functioning at our own personal best and working toward our life goals.

In just the past few months, here are just some of the ways that home care workers have made a huge difference for my health and/or independence and/or work:

  • Last week my wheelchair sip-and-puff mechanism started malfunctioning, to the point that I could not drive it. I had several important work meetings coming up in the following days, that I was afraid I would have to miss. My attendant Suzi figured out where the leak was, and fixed it temporarily until the right tube was restored. (On top of being an excellent PCA, Suzi is usually my fix-it person when the wheelchair repair company doesn’t return my phone calls!)
  • In August, I spent an amazing week in Los Angeles at the 2010 Lambda Literary Retreat (fondly called “queer writers’ camp”). Cara and Mallorie accompanied me, and they both did an extraordinary job of supporting me so I could get the most out of the opportunity. They creatively found and processed food I could eat safely. They worked hurried morning shifts and late-night shifts so I could attend workshops and social events. They gave me space and silence within which to write poetry, while making sure I got my physical needs met. When the airline misplaced one of my ventilators, they cut and taped an ill-fitting tube to make the other ventilator serve temporarily.
  • For nearly a year, Krista has shown up every weekday morning, as early as I need her to, enabling me to supervise my daughter in getting ready for school. Any instability in this schedule could be disastrous for my family. But unlike in some earlier years, these days I never go to bed worrying about a morning cancellation or no-show.

    •  

    All of my current attendants are great – highly competent, reliable, smart, cooperative, and calm amidst craziness. And I have enough experience under my belt to know how hard life can be when that’s not the case. (Attendant horror stories belong in another blog post.)

    Another whole column – or a whole book – could be devoted to discussing the labor rights, or lack thereof, of home care workers. Given what they do, they are for the most part underpaid, uninsured, and unsupported by society as a whole. They usually don’t get paid sick days or vacation days. In only a few states do they have union representation.

    So many entities make inflated profits by exploiting our disability-related needs. But the people doing the real, hard work that helps us live independently don’t get nearly enough. People with disabilities and our support workers need to organize together, to demand fairer policies and more resources for this work.

    For now, though, I’ll use Labor Day as a day to express my appreciation for these indispensable workers.

    The End of Summer

    Labor Day also represents the end of summer, if not officially, then at least traditionally. My most recent “Life Support” blog post for the Reeve Foundation website describes one of the highlights of my summer. Surf on over there and read “Roughing It, Accessibly, in a Colorado Yurt.” And while you’re there, check out the other great bloggers, articles, and information.

    Speaking Out Against the MDA Telethon

    Aug 26th, 2010
    by admin.
    6 comments

    It’s almost that time of year again when, wits dulled by sunburn and picnic overindulgence, some Americans collapse in front of their TVs and watch the Labor Day Telethon, sponsored by the Muscular Dystrophy Association (MDA). Some will be so fascinated or confused by the second-rate celebrity appearances and cheesy production values that they’ll stay glued to the set into the wee hours of the night.

    Mixed in with the weirdness will be some subtle and not-so-subtle messages about life with disability. This is why so many disability rights activists will either shut their eyes and try to pretend it’s not happening, or will take a little time away from more pressing issues to complain loudly about the Telethon.

    There are numerous problems with the MDA Telethon. It’s based on the premise that disability is a terrible fate, that people never stop grieving a diagnosis of a neuromuscular disorder. In the Telethon world, disabled people might go to school or work, but only to take their minds briefly off of their tragedy, and to pass the time until the day — just around the corner, as it’s been for over 50 years of Telethon history — when they will be cured. On that miraculous day, people “stricken” with this “terrible disease” will get out of their chairs and walk into a normal, happy life. Until then, pity is the name of the game.

    This morning I spoke about why we protest the MDA Telethon on a New York City radio program, The Largest Minority. The host is T.K. Small, a Brooklyn attorney and activist. Other guests also discussed the Telethon, including Professor Beth Haller from Towson University, a media expert and author of a new book entitled Representing Disability in an Ableist World; and Paul Timmons of Charleston, SC, who will take part in a Telethon protest happening there next weekend in honor of our late friend Harriet McBryde Johnson. Harriet always delighted in being a thorn in MDA’s side, brilliantly criticizing the Telethon, and I met Paul at her memorial service two years ago. (Paul’s primary, very worthy project is Portlight Strategies Inc., which provides disaster relief to disabled and other underserved communities.)

    T.K., Beth, Paul, and I are all involved in a range of important, even urgent disability rights causes. But once a year, many such activists feel a need to respond to the seemingly trivial, annoying antics of a bunch of misguided entertainers. We have to remember that the MDA Telethon still reaches a lot of people out there in TV-land. We have to be there to articulate a different view of our lives as people with disabilities.

    To download and/or listen to the show in MP3 format, click here.

    Five personal reasons why I want our lawmakers to vote FOR the health care reform bill, imperfect though it is…

    Mar 19th, 2010
    by admin.
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    Five personal reasons why I want our lawmakers to vote FOR the health care reform bill, imperfect though it is:

    1. I hope that some of my disabled sisters and brothers currently in nursing facilities will be able to leave the institutions, and receive the support they need under the bill’s plan to improve Medicaid. Among other provisions, states would be offered a 6% increase in the federal Medicaid match, to encourage them to provide community-based personal attendant services.

    2. I hope that some future people with disabilities — which could include any of our aging parents, our returning veterans, or anyone else among us — will be able to get the assistance they need in their own homes, without impoverishing themselves to qualify for Medicaid, through the bill’s long term care insurance services program.

    3. I hope that some of my attendants who are currently unable to afford health insurance, or unable to obtain it due to pre-existing conditions, will finally have access to health care. They work incredibly hard supporting my and other people’s health, independence, and quality of life, yet this important job does not provide them with employer-sponsored health insurance. I sincerely hope there will soon be affordable, meaningful, portable coverage available to them.

    4. I believe, deeply, that health care is a human right. This bill takes an incremental step toward fulfilling that right, for some people. It’s not enough, but it may be a start.

    5. I want to defeat these assholes.

    Disability Rights Resolutions for the March 16 Democratic Caucuses

    Mar 15th, 2010
    by admin.
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    If you live in Colorado and you are registered as a Democrat, I hope you’ll help support disability rights becoming part of the Party platform. You can do this by introducing disability rights resolutions at your neighborhood caucus tomorrow night, March 16. I have drafted two resolutions — one about health care reform and community choice, the other about ratification of the Convention on the Rights of Persons with Disabilities.

    The text of both of these resolutions is pasted below. Click on these two links to download printable, PDF copies of both —

    A RESOLUTION TO INTEGRATE COMMUNITY CHOICE INTO HEALTH CARE REFORM (PDF)

    A RESOLUTION TO URGE THE UNITED STATES SENATE TO RATIFY THE CONVENTION ON THE RIGHTS OF PERSONS WITH DISABILITIES (PDF)

    ——–

    A RESOLUTION TO INTEGRATE COMMUNITY CHOICE INTO HEALTH CARE REFORM

    WHEREAS Americans with disabilities and chronic health conditions rely heavily on public health programs, primarily Medicaid and Medicare, not only for primary health care but also for long-term care needs; and

    WHEREAS Medicaid and Medicare contain a strong institutional bias, with funding policies favoring placement in nursing homes and other facilities, thus draining resources away from home and community based care; and

    WHEREAS every state participating in the federal Medicaid program is required to provide nursing home services, but home and community based services are optional, and are thereby unavailable in many states; and

    WHEREAS sixty-seven percent of Medicaid long-term care dollars pay for institutional services, while the remaining thirty-three percent must pay for all community based services; and

    WHEREAS the vast majority of people disabled by age, injury, or illness would prefer to receive services in their own homes rather than in institutions, yet many are forced by current policies to enter facilities in order to get the assistance they need; and

    WHEREAS the institutional bias not only deprives people of choice, home, and independence, but also costs taxpayers far more than would a comprehensive nationwide system of home and community based services; and

    WHEREAS as the population ages and more people require long-term care, the current institutionally-biased health care system will become more expensive and unsustainable; and

    WHEREAS the Community Choice Act (CCA), introduced in the U.S. House and the U.S. Senate, would allow individuals to choose home and community based services as an alternative to placement in a nursing facility; and

    WHEREAS the CCA would provide states with financial assistance and incentives to reform their long-term care service systems to provide services in the most integrated setting;

    THEREFORE, be it resolved that

    THE COLORADO DEMOCRATIC PARTY supports the concept of community choice in long-term care programs; and that

    THE COLORADO DEMOCRATIC PARTY pledges to ensure that health care reform legislation and policy proposals emphasize choice and independence rather than institutionalization.

    ——–

    A RESOLUTION TO URGE THE UNITED STATES SENATE TO RATIFY THE CONVENTION ON THE RIGHTS OF PERSONS WITH DISABILITIES

    WHEREAS at least ten percent of the world’s population, more than 650 million people, have physical or mental disabilities; and

    WHEREAS throughout the world, many people with disabilities are denied their human rights and kept on the margins of society; and

    WHEREAS the United Nations adopted the Convention on the Rights of Persons with Disabilities (“the Convention”) on December 13, 2006; and

    WHEREAS the Convention establishes the legal obligations of governments to recognize and respect the rights of persons with disabilities; and

    WHEREAS the purpose of the Convention is to promote, protect, and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity; and

    WHEREAS the Convention sets forth general principles including individual autonomy, independence, nondiscrimination, full participation and inclusion in society, respect for difference and acceptance of persons with disabilities as part of human diversity, equality of opportunity, accessibility, equality between women and men, and respect for the evolving capacities of children with disabilities; and

    WHEREAS the Convention is crucial for the social and economic development of societies worldwide, including in developing countries where eighty percent of people with disabilities live;

    WHEREAS eighty-two nations have already ratified the Convention; and

    WHEREAS at President Obama’s direction Susan Rice, U.S. Ambassador to the United Nations, signed the Convention on July 30, 2009; and

    WHEREAS adoption of the Convention by the United States requires ratification by two-thirds of the U.S. Senate;

    THEREFORE, be it resolved that

    THE COLORADO DEMOCRATIC PARTY calls on all Democratic senators to actively support ratification of the Convention on the Rights of Persons with Disabilities; and that

    THE COLORADO DEMOCRATIC PARTY urges the U.S. Senate to ratify the Convention on the Rights of Persons with Disabilities as soon as possible.

    Debating Advocacy Priorities: Free the Oppressed, or Promote Employment?

    Feb 3rd, 2010
    by admin.
    4 comments

    Always willing to challenge the disability rights movement with provocative ideas, my friend Josie Byzek has now written a column calling on our advocacy movement to make employment a top priority. It hasn’t been, says Josie, and “this has got to change.” She questions the wisdom of expending so much of the movement’s energy and resources on the nursing home issue. She argues that we should shift attention to employment advocacy, so that improved job opportunities will help keep people from getting so poor that they end up institutionalized.

    I have a couple of quibbles with Josie’s column. (I don’t think she’ll mind me airing my critique. I know Josie well to know that she enjoys a healthy, respectful debate.)

    First of all, Josie’s article attributes the lack of focus on employment, in part, to “a community organizing model that erroneously teaches change can only come from the very bottom up.” She goes on to make this questionable claim: “I can’t think of a single successful social change movement that was initiated and propagated primarily by the poorest of the poor, the most oppressed of the oppressed. Social change, in actuality, typically begins in the middle class.”

    When I read this statement, Cesar Chavez and the farmworkers movement leapt immediately to mind: Poor, disenfranchised, marginalized by class, race, and language, these laborers organized a massive and ultimately successful grape boycott to protest their exploitation by the agricultural industry.

    Then I thought of those drag queens rioting at the Stonewall Inn, fighting back against police harassment and other forms of discrimination. These unsung heroes in high heels, mostly low-income people of color, sparked the modern lesbian/gay/bisexual/transgender (LGBT) movement. (If anything, that movement’s takeover by the middle class has threatened to derail it. Instead of demanding real justice, and the right to be ourselves in any environment, the LGBT movement’s loudest current demands are to be allowed to assimilate into two of our society’s most oppressive institutions: marriage and the military.)

    So I disagree that a grassroots, bottom-up advocacy model is wrong for the disability rights community. Having said that, I agree with Josie about the importance of job opportunities. Our community should be outraged by the fact that only around 37 percent of disabled Americans are employed. Like Josie, I would like to see a more aggressive “push for policies that truly can shift that unemployment rate.”

    This is more than a civil rights issue, it’s a human rights issue. The International Convention on the Rights of Persons with Disabilities — which took effect in 2008, and which has been ratified by 78 countries (though not yet by the United States) — recognizes “the right of persons with disabilities to work, on an equal basis with others; this includes the right to the opportunity to gain a living by work freely chosen or accepted in a labour market and work environment that is open, inclusive and accessible to persons with disabilities. (Article 27).” It goes on to call for nondiscrimination, reasonable accommodation, affirmative action, training and placement services, self-employment opportunities, and more.

    And just as important, I think, is Article 28 of the Convention, which recognizes “the right of persons with disabilities to an adequate standard of living for themselves and their families, including adequate food, clothing and housing, and to the continuous improvement of living conditions…”

    Our disability advocacy movement needs to prioritize economic issues, including but not limited to employment. Certainly, everyone should have access to opportunities to use their skills and talents for financial reward, for this increases our choices in life, and improves our own and our families’ well-being. Most disabled people are denied those opportunities. In the U.S., disabled people’s lives tend to enrich other people, while leaving us relatively poor. Many of us aren’t allowed to earn a living; if we do, we can lose the very supports that keep us alive and out of nursing homes. There are a few loopholes, called work incentive programs, but these are quite complex, and people who use them frequently face bureaucrats’ suspicion and mistreatment.

    Furthermore, workplaces can be very unfriendly to people with significant disabilities. I’m not just talking about blatant prejudice. I’m talking about corporate structures that barely tolerate any human needs or differences on the part of workers. Schedules and duties can be rigid, office politics can be baffling, and organizational cultures can be downright brutal. Even non-disabled workers have difficulty with these aspects of many job environments; for workers with chronic physical conditions, or mental health issues, they can become insurmountable barriers. Yet the rehabilitation industry, and even employment advocates, focus mostly on getting disabled people “ready for the job market.” I think we need to advocate for fundamental changes in the U.S. workplace, beyond just a reasonable accommodation to an individual’s disability. We need to reconfigure corporate America, to make it serve workers and consumers — indeed, to make it serve the public good — rather than to funnel resources upward into an ever-growing concentration of wealth.

    And while I agree with Josie that we “ought to be delinking disability from poverty,” I also think we ought to be delinking poverty from suffering. No human being should endure deprivation of basic material needs such as housing, food, and clean water. In the spirit of Article 28, we must advocate for “an adequate standard of living… and… continuous improvement of living conditions.”

    Which brings us back to the nursing home issue. We should demand job opportunities, for anyone with a disability who can and wants to work. But as long as so many of us live with the fear of losing our right to live in the community, we must focus on freedom instead.

    Judi Chamberlain (1944-2010), Activist, Author, Global Traveler — In (Some of) Her Own Words

    Jan 19th, 2010
    by admin.
    3 comments

    Judi Chamberlin passed away a few days ago, leaving a legacy of activism, truth-telling, and leadership. She was a highly respected founder of the movement for civil rights for people with psychiatric labels, and for all people with disabilities and chronic illnesses. She had recently kept a regular blog called “Life As a Hospice Patient.”

    I didn’t know Judi well, but I was fortunate to be able to interview her for my 2005 book, Survival Strategies for Going Abroad: A Guide for People with Disabilities. She shared the wisdom she had gained from her own international travel experiences, journeying throughout Eastern and Western Europe, Australia, New Zealand, Japan, and other destinations. She gave speeches, and consulted with grassroots psychiatric survivors’ projects, and carried out advocacy activities related to her role as a board member for Mental Disability Rights International.

    Her close friends and colleagues are posting many moving remembrances and tributes in honor of Judi’s life and work. Even the national media has taken notice, with stories on National Public Radio and in the Boston Globe. I would just like to share some of her own statements, from my interview with her, about traveling and working with the worldwide disability rights community.

    During the interview, Judi recalled one of her earliest global traveling experiences — a long, miserable flight to Australia. “There was a point, about halfway through the trip, when I thought, ‘I just can’t stand this.'” When she finally arrived, she remembers being “just totally exhausted, totally wiped out, nonfunctional.” But her ride from the airport, with fellow human rights activists, turned her mood around completely. “We got in the car and started driving toward Melbourne. Within five minutes, it was like we had known each other all our lives, because we had such an intense common frame of reference.”

    Since then, Judi told me, her own mental health issues never really posed a barrier to her globetrotting. “I’ve never gotten depressed while I traveled,” she said, adding with a laugh, “I’ve gotten depressed when I came home!” In contrast, her chronic lung disease sometimes created problems for her, such as when traveling to high altitudes or polluted environments.

    In her travels, Judi always met with other psychiatric survivor advocates, where she always found a very supportive environment. “It’s really important to know that there are psychiatric survivor organizations in every country and to try to make contacts with them,” she said.

    I asked what advice she would give to others planning to go overseas. She answered:

    “The biggest thing for people with a psych disability who think that they might have some sort of stress-related episode or whatever, would be to learn in advance as much as you can about what kinds of support systems you can set up. If people are not familiar with psych disability and you say to them, ‘I’m just terribly depressed, or in having an anxiety attack, or I’m beginning to hear voices,’ if people are naive about it, they might send you to a hospital — not where you want to be in another country.

    “I’m not sure the U.S. Embassy would be terribly helpful, because they have the same ideas as anybody else — that if you’re in the psychiatric system, you probably need to be there. That’s why I think it’s really important, there’s an ex-patient group or an advocacy group — or in the absence of that, just some sort of disability group — that you know about in advance. If you deal with these things on a repeated basis, and and are afraid it might happen to you when you’re abroad, you probably have some kind of self-care plan. And if you’re staying with a host family, you should be able to discuss it with them, preferably before you get there rather than after — ‘ Look, sometimes what happens to me is this. And what helps me at these times is this.’ Set up your support systems in advance, even if you’re never going to need them.”

    I asked Judi whether she would recommend disclosing mental health diagnoses or other invisible disabilities when applying to travel abroad programs. She commented:

    “Some people have a psychiatric history, but they’re not frequently dealing with any psychiatric symptomology. So they have to weigh the stigma factor against any benefit. If a person thinks it’s likely that while I’m abroad I might get anxious or get depressed, and might act in some ways that people might not understand, then it might be a good idea to set something up in advance.”

    I asked her to talk about the similarities and differences among the different places she had visited, with regard to psychiatric survivors’ issues. She said:

    “It’s interesting — wherever I go, people say to me, ‘In this particular country’ — wherever we happen to be — ‘the problems of stigma are much greater than they are anywhere else.’ It always makes me laugh. The problem of stigma, the perceptions of people with psychiatric disability, are the biggest obstacle that we face. It may vary in its cultural context a little bit, but it really doesn’t differ all that much from one country to another. People with psychiatric disabilities are very widely perceived as being unable to care for themselves, and being fundamentally different from other people; and legally they are disadvantaged in that they can’t control their own lives in the ways that other people can. This is very, very cross-cultural.”

    While the stigma and oppression exist all around the world, so does the solidarity. Judi said:

    “I really feel that there’s a unity among psychiatric survivors that just transcends language and culture, so if somebody wants to feel grounded they should definitely try to find some of those folks, in advance, before they go. Get some names, get some contacts.”

    How to Help Haitians?

    Jan 13th, 2010
    by admin.
    4 comments

    “Haiti Rocked by 7.0 Quake.” I read the news as I sat in the waiting room at Children’s Hospital, checking the New York Times website on my laptop computer. Of course I was worried about my daughter, going through a surgical procedure that was minor but nevertheless required general anesthesia. Now, less than 24 hours later, she’s fully recovered, while the reports from Port-au-Prince and surrounding areas get worse and worse. I look back to yesterday, and recognize the extraordinary privilege I was enjoying, even during that stressful afternoon. My child was getting excellent medical care, funded by the Children’s Medicaid program. I knew where my friends and loved ones were; some were with me, and some were sending me words of encouragement through the Internet. And I was in a building which (besides offering a wireless connection) stood on solid ground, with safety and stability engineered into its very structure.

    Like everyone, I want to do something, however small, to help support the survival and recovery of the Haitian people. All I have to offer is a little bit of money. So where should I send it? There are a number of fine organizations that are now, or will soon be, working on the ground to help heal and rebuild. There are other groups that might waste donations on excessive administrative costs or poor management. As a member of the global disability community, I am committed to ensuring that my donation will benefit disabled people, as well as others. I won’t let my uncertainty delay my contribution, which is tiny enough, so I did some quick research, both about Haiti itself, and about current relief efforts.

    Haitian Novelist Edwidge Danticat described a little bit of her country’s history on today’s episode of Democracy Now: its founding as the first black republic in the western hemisphere, followed by the refusal of many other countries to recognize its independence; also its crushing international debt and resulting poverty. Haiti has endured colonialism, economic oppression, hurricanes, and social turmoil. This earthquake, said Danticat, “seems like the abyss of a very long and painful history of natural and political disasters.”

    In the context of such a desperately poor society, people with disabilities have few opportunities for health, integration, and safety. According to one source I found, this small country’s population includes around 800,000 disabled people.

    Disabled children, in particular, are often sacrificed for their families’ economic survival. According to the United Nations, as reported last year by the BBC, many of Haiti’s 200,000 children with mental or physical disabilities wind up living on the streets — or in orphanages, which is often worse. A UNICEF official is quoted as saying that only a quarter of Haiti’s 600 child care institutions are legal, and subject to any monitoring. In the others, children are often abused physically, sexually, and mentally.

    Natural disasters always exacerbate these kinds of pre-existing social atrocities. And unfortunately, relief efforts don’t always take into account the needs of people with disabilities. I was glad to hear that Habitat for Humanity is already planning to go in and help low-income Haitians rebuild homes. However, as I was reading through Habitat’s website, I was disappointed to discover that their commitment to building homes accessible to people with disabilities, adopted several years ago in response to accessible housing advocates, applies only to homes they build in the United States. No such policy extends to their international projects.

    So how best to help? There are the tried-and-true non-governmental organizations that do outstanding humanitarian work, and that are already mobilizing to provide aid in Haiti, including:

    Medicins Sans Frontieres / Doctors Without Borders
    http://www.doctorswithoutborders.org/index.cfm

    UNICEF
    https://secure.unicefusa.org/site/Donation2?df_id=6680&6680.donation=form1

    Oxfam
    https://secure.oxfamamerica.org/site/Donation2?idb=1826472882&df_id=3560&3560.donation=form1

    Also, friends and other people I respect have recommended the following:

    The Lambi Fund of Haiti
    http://www.lambifund.org/

    Partners In Health
    http://www.pih.org/home.html

    I was looking for a more disability-specific group, with the necessary infrastructure and integrity to provide effective assistance. Then I got an e-mail from my fellow advocate, Paul Timmons, who announced that Portlight Strategies Inc., an organization he’s worked with for some time, is now mobilizing to provide medical equipment, shelter, and food for people with disabilities in Haiti. Portlight helped a lot of people during the Gulf Coast hurricanes over the last few years. They are preparing to send a container full of equipment and supplies to Haiti in the next few days. They are also working with a community of Catholic nuns in Port-au-Prince who will be opening shelters. Portlight needs money to help pay the costs of shipping the equipment, and to buy food and other shelter supplies.

    So that’s where I sent my measly fifty bucks. I would feel fine about supporting any of the other organizations listed above, and would be interested in knowing where readers of this blog are sending their support. Feel free to post comments, along with links to worthy organizations.

    Question: Would Anyone Really “Hurt the Handicapped”? Answer: It Happens More Than You Think

    Dec 1st, 2009
    by admin.
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    Is there such a thing as a hate crime based on disability?

    When President Obama signed the Matthew Shepard and James Byrd, Jr. Hate Crimes Prevention Act into law last month, much of the excitement centered around the inclusion of sexual orientation. I too am moved that federal protection has now been extended to LGBT folks attacked by those who cannot tolerate our different expressions and gender and/or sexuality.

    Equally importantly, the bill also covers crimes targeting people with physical or mental disabilities. This aspect has received less attention, possibly because many people find the very concept of disability hate crime difficult to fathom. Who could hurt the handicapped? What kind of a dirty low-life would sink so low as to prey upon a helpless disabled person?

    Ironically, these common questions reflect social biases which actually contribute to violence against people with disabilities. When we are lumped into a stereotype called “the handicapped,” and seen as easy targets, passive and vulnerable, then perpetrators are more likely to seek us out and to get away with their offenses. On the other hand, when we are active and respected in our communities, we can count on some natural protection: visibility, connectedness, and legal recourse.

    Hate crimes targeting disabled people do occur. In 2007, the FBI tracked 82 hate crimes spurred by disability bias, the majority (62) directed at people with mental disabilities. Those federal statistics reflect only a fraction of this growing problem. The Tennessee Bureau of Investigation recorded 42 hate crimes against disabled people, reflecting an 88% increase since 2007.

    That figure represents only 1% of last year’s official incidents of hate violence, but I suspect it significantly underestimates the scope of the problem. Even more than other minority groups, disabled people are most likely to be victimized when they are isolated. Crimes against victims with disabilities often occur in segregated environments such as nursing facilities and residential schools. These offenses are less likely to be reported at all, and are more difficult to investigate.

    Further distorting the statistics, crimes against people with disabilities rarely get framed as “hate crimes.” Other labels come more readily available, such as “abuse of a vulnerable adult,” “exploitation of an incapacitated person,” and others. These terms themselves contribute to a mindset that views people with disabilities as inherently weak, ripe for attack. Such thinking implicitly blames the disabled person, rather than the perpetrator, for the crime.

    Though welcome, the new law may prove less effective in protecting my community. Attackers, more often than not, work in positions of power, in fields such as human services or law enforcement, and may therefore commit their crimes under cover of their authority. Will these offenses be counted as hate crimes?

    Still, the new hate crimes law takes another step toward preventing violence against people with disabilities, if only because it recognizes both the value we offer to society, and the risks we face.

    Putting My U.S. News & World Report Article in Perspective

    Aug 13th, 2009
    by admin.
    2 comments

    I had an op-ed essay opposing futile care policies and health care rationing published in the August 2009 issue of U.S. News & World Report. The print magazine hit newsstands several weeks ago, and yesterday it was posted on the magazine’s website.

    Shortly after I submitted my essay, I started hearing some Republicans criticizing President Obama’s health care proposals using some similar-sounding concepts. They warned that expanding coverage to more people would result in “rationing,” and specifically the denial of care to elderly and disabled people. Sarah Palin, who seems determined to move on from her unimpressive term as governor of Alaska to another disastrous quest for national office, is advancing such claims. She has suggested that her baby, who has Down syndrome, would be endangered by the President’s plan. Palin said the following:
    “the sick, the elderly, and the disabled would suffer the most under such rationing; and that under such a system these ‘unproductive’ members of society could face the prospect of government bureaucrats determining whether they deserve health care.”

    Click here to read Palin’s entire diatribe.

    This is nonsense.

    As the author of what I hoped was a thoughtful, fact-based argument, I want to clarify that my concerns about treatment refusal and related issues do NOT mean I am opposed to health care reform. I do not believe in the specter of “death panels” concocted by Palin and other right-wing obstructionists. Instead, I’m talking about what is already happening, largely as a result of our profit-driven insurance system: Physicians and administrators employed by corporate health plans feel the pressure to maximize company revenues by cutting costs. They inject their own fears into “compassionate” recommendations against treatment, but this occurs in the context of coverage plans where private money interests matter more than the public good.

    The arguments put forward by Sarah Palin, and some others, basically amount to, “My family has good insurance, so why should I care what anyone else does or doesn’t have?” I find this outrageous. Around 16 percent of Americans do not have access to health care. A few of these are people who probably don’t really need it — yet — but many of the rest are families with kids, or adults with chronic conditions, for whom the lack of coverage is a real hardship.

    I find it especially ironic that some of the politicians who claim to want to ensure that Grandma and Baby Trig receive all necessary health care are the very same politicians who have no problem denying care to 47 million uninsured Americans, including many people disabilities and chronic illnesses. They claim to fear “government-run health care,” implying that it would be inherently evil, or low-quality, or too expensive. In my view, an expansion of government-funded health care could be far more humane and cost-effective than the services currently offered by the major health conglomerates.

    I have experience with government health care — not in England or Canada, but right here in Colorado. It’s called Medicaid, and while it’s far from perfect, for many years it has covered my medical and independent living support needs far better than any private insurance policy would have. And it does so at an administrative cost of about 3 percent — much lower than private insurance industry standards.

    It’s true that I and other people with disabilities have encountered problems with Medicaid bureaucracy — unfair denials, bungled paperwork, inaccurate information, and so on. But oftentimes, problems can be resolved through individual advocacy or systems advocacy — something you definitely cannot say about the private insurance industry!

    Still, we can expect the rumor-slinging to continue and, unfortunately, the fearmongers will continue to exploit people with disabilities in manufacturing their dire warnings. In a recent, rather hilarious example, a conservative US publication wrote that Stephen Hawking would be allowed to die, IF he were British. Of course it turns out that Hawking is both British and alive. Furthermore, he has some very good things to say about the National Health Service.

    Click here to read a good article by someone who has read the entire health care reform bill, and analyzed it from the perspective of care for people with disabilities.

    Now my perspective is that the current health care reform proposal is not entirely adequate, since it does not address the important issue of long-term care. ADAPT and other advocacy groups have been urging inclusion of the Community Choice Act in health reform. Without this, I think any changes will be far less successful. Click here to get more information about the Community Choice Act.

    Don’t Sacrifice Disabled People’s Lives to Balance Bungled Budgets

    Jul 13th, 2009
    by admin.
    No comments yet

    In several states, crucial services for people with disabilities are being sacrificed to the politics of fear and greed. We all know the economy is bad, ravaged by orgies of risky investing and corruption. Corporations and other private entities largely created this mess — though certainly federal government agencies such as the Securities and Exchange Commission failed in their watchdog duties — but state governments unfortunately bear the brunt of a diminished tax base. All kinds of social and educational services are suffering, but there is a growing fear among people with disabilities that our right to live independently in our own homes — even our very lives — may be at risk.

    In one of the wealthiest states in the nation, California, money is being squandered on oil subsidies, tax breaks for the wealthy, and other misplaced priorities. The strained state budget is being exacerbated by politicians’ failure to find equitable, commonsensical savings. For example, the ACLU estimates that California could save over $100 million per year by suspending the death penalty. Instead, Gov. Schwarzenegger is pushing through cuts in home care workers’ wages and their disabled clients’ hours.

    Similarly, Illinois officials seem ready to penalize disabled home care users for the state’s budget crisis. The governor has vetoed the legislature’s budget, and unless the legislature override that veto or comes up with a new budget by Wednesday, money for attendants’ wages may disappear.

    This certainly isn’t the first time in history that disabled people have been considered expendable. However, my sisters and brothers in California and Illinois aren’t going down without a fight. Some are staging angry protests. Others are just telling their stories, forcing the public to confront the consequences of political and economic injustice.

    Find Laura Hershey on Facebook.

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