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

disability rights

Speaking Out Against the MDA Telethon

Aug 26th, 2010
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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.

Disability Rights Resolutions for the March 16 Democratic Caucuses

Mar 15th, 2010
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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)

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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.

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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.

Oral History and Disability Rights

Dec 17th, 2008
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Storytelling and reflection have been at the heart of most of my writing. During the last couple of years, I’ve had the opportunity to explore a field that’s all about recording people’s experiences and memories — oral history. I volunteer as an interviewer for the Regional Oral History Office (ROHO), at the University of California. I’ve conducted in-depth interviews with four dynamic disability rights activists, two women and two men, all brilliant organizers and thinkers.

Transcripts of two of those interviews have just been posted online, as part of ROHO’s Disability Rights and Independent Living Movement collection.

Alana Theriault is one of the most knowledgeable people I know when it comes to Social Security and Medicaid benefits, employment options, and personal assistance programs. She has helped numerous Californians navigate through these mind-bogglingly complex systems. She has also helped to formulate policy, always advocating for more fair and flexible regulations. Alana gained all this knowledge by necessity. As a teenager, lacking adequate support services at home, she went to live in a nursing facility. Determined to achieve independence, she fought for the resources she needed, and found a supportive disability community. Since then, she has lived a self-determined life, and helped others to do the same.

John Kelly combines scholarship and advocacy in creative, provocative ways. Through writing, teaching, and activism, he challenges our culture’s deep investment in the concept of “ability,” and how that leads to discriminatory attitudes and practices affecting disabled people. Since his injury as a young man, John has questioned why disability, a perfectly natural phenomenon, causes such fear and loathing in our society.

I’m proud of my work on these interviews. I’m also really impressed with the important contribution that ROHO is making to documenting the ongoing movement for the rights of people with disabilities.

To read the interviews with Alana Theriault and John Kelly, follow this link and then click on the name.

Jerry Lewis, Oscar-sanctioned “humanitarian”

Dec 12th, 2008
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The news broke on December 10 that Jerry Lewis will receive the Jean Hersholt Humanitarian Award at the Oscar Award ceremony on February 22. Since Lewis’ primary, highest-profile, and as far as I know, only “humanitarian” effort is his many decades of hosting the Labor Day Muscular Dystrophy Telethon, I can only conclude that the Motion Picture Academy is rewarding Lewis specifically for perpetuating negative stereotypes of disabled people, whom he has referred to as “half persons.”

As word has spread around the disability activist community, the tone of the e-mails has evolved quickly from disbelief, to anger, to determination. This award provides further evidence that Hollywood, and by extension mainstream America itself, still has no clue — or doesn’t care — about the disability rights movement’s analyses of the discriminatory attitudes and actions that we face.

Jerry Lewis didn’t create those discriminatory attitudes, but he has helped fuel them. In 1990, he wrote that if he had muscular dystrophy and had to use a wheelchair, he would “just have to learn to try to be good at being a half a person.” During the 1992 Telethon, he said that people with MD, whom he always insists on calling “my kids,” “cannot go into the workplace. There’s nothing they can do.” That’s just the kind of thinking that has contributed to disabled people’s extremely high unemployment rate.

Comments like these have led disability activists and our allies to protest against Jerry Lewis, and against the Telethon. We’ve argued that the Telethon promotes pity, a counterproductive emotion which undermines our social equality. Here’s how Lewis responded to the Telethon protesters during a 2001 television interview: “Pity? You don’t want to be pitied because you’re a cripple in a wheelchair? Stay in your house!”

On February 22, 2009, we won’t be staying in our houses watching the Academy Awards. We’ll be publicly objecting to this award. We’ll be defending our own humanity against this so-called “humanitarian.” Stay tuned…

For more information about the history of the Telethon protest, go to
http://www.cripcommentary.com/LewisVsDisabilityRights.html