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


Last Word on the MDA Telethon (at least for this year)

Ego and Soul

Yes, the Telethon was bad again this year, at least the bits I watched. One thing that continues to amaze me is how big a role Jerry Lewis’ big ego plays, all the way throughout the Telethon. Here’s one late-night quotation that I bothered to write down:
“This child in the [Boston] Hospital had muscular dystrophy, and I went to see him, and he smiled when I walked into the room, and he grabbed my hand, and he said, quote, ‘I’m glad I got muscular dystrophy, because that’s why I met you.’ I rest my case. If there are naysayers out there, and if they’re uncertain as to the validity of my soul, trust me – it was a moment in time that takes me through the program in 2001 all the way through 2010.”

I don’t know anything about Lewis’ soul, “valid” or otherwise. I only know that his presentation of disabilities distorts reality, making it appear as though a cure for muscular dystrophy is both imminent and sufficient. In fact, what we need is a society committed to including and supporting all people with disabilities, regardless of particular diagnosis.

More Reasons to Disbelieve the Telethon

It’s not just the pity mentality that causes harm. As activist Nick Dupree argues in his blog, the Telethon creates an illusion that people with disabilities get everything they need, courtesy of private charity. As Nick points out, nothing could be further from the truth. Coordination and necessary equipment are sadly lacking, and vital home care and other services are being gutted in many states. And MDA itself doesn’t even provide what many people have come to believe it provides. Read the scanned copy on Nick’s site of the letter from the CEO of MDA, highlighting all the things they no longer offer to their clients.

Post Columnist Gets It!

Susan Greene just wrote an excellent column for the Denver Post explaining our objections.

20th Telethon Protest in Charleston

The stalwart activists of Charleston, SC protested the Jerry Lewis Telethon yesterday, just as they have for 20 years since the late great Harriet McBryde Johnson started raising hell about it in 1990. Here are some photos from the Charleston protest, and an unpublished letter to the editor by Harriet’s friend and colleague John Polito.

One More Word from Me

And here’s an brief video clip of me talking about the Telethon.

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

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.”

Oral History and Disability Rights

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.

Remembering Studs Terkel

Studs Terkel, who died last Friday at the age of 96, lived a rich, joyous life full of rabble-rousing and storytelling. He recorded hundreds of radio interviews and commentaries, and published several books of oral history and memoir.

I especially appreciated Terkel’s contribution to the field of oral history, which he sometimes called “guerrilla journalism.” He interviewed hundreds, or perhaps thousands, of ordinary Americans, and documented their views and experiences in books about war, work, race, faith, hope, and death. He gave voice to all kinds of people, not through the manipulative modern mechanisms of focus groups and polls, but just by asking open-ended questions, and listening respectfully to the answers.

For the last decade or so of his life, Terkel joined the ranks of people with disabilities — as most people will, if they live long enough! Characteristically, Terkel took his age-related impairments in stride. He spoke openly about the “caregivers” who provided his daily personal assistance, as well as about his mobility and hearing impairments. During one interview in 2003, when he was 91 years old, Terkel remarked on both the naturalness of disability, and the alternative perspective that it can sometimes provide:

“By the way, I have a difficult time hearing, and I may miss some of Harry’s comments and misunderstand them. I try to answer them as I think they are. Sometimes having a hearing impairment is very good. It gets you closer to the truth. For example, during the few days of Bush’s triumph in Iraq, we heard the phrase ’embedded journalists,’ continuously. But to my ear, it comes out ‘in bed with journalists.’ And so you see, hearing impairment does away with euphemisms. We compose it to a higher truth.”

Terkel never claimed to be an “objective” journalist. He wanted things to change, and he celebrated those people throughout history who organized and advocated for change. Here’s another quote from that same 2003 interview:

“There was Thomas Paine. There was Samuel Adams. They were activists. The abolitionists, they were activists. Then came the sixties, the black people, the students — activists… It may seem as though the odds are against them… but they have that thing called hope, others are imbued with it, too. That’s why I honor them…”

And I honor Studs Terkel, whose life and work continues to imbue so many people with hope.