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Laura’s Labor Day Weekend Column

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.

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

    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.

    More about Haiti and Disability…

    I wrote last week about Portlight Strategies Inc., which is mobilizing aid to Haitians, especially those with disabilities, in the aftermath of the earthquake. Portlight is continuing to collect emergency supplies and equipment, for shipment from Atlanta to Port-au-Prince. The group still needs money and publicity to carry out its important work. If you want to help, click here or call 843-817-2651.

    The U.S. disability community has rallied to try to assist our Haitian counterparts. My friend T.K. Small, a Brooklyn attorney with a physical disability, has spent many hours during this last week making phone calls and writing e-mails, educating and urging people to support Portlight. Dozens have responded, and have spread the word even further. In addition, the Institute on Disabilities at Temple University has launched a Haiti Disability Response effort, in conjunction with Portlight, to obtain priority items such as crutches, walkers, canes, splints, ramps, and medical supplies.

    Meanwhile, another major development is happening with the Haitian disability community: It is growing exponentially. Amid all the deaths, a still untold number of residents are surviving with serious injuries, such as crushed arms and legs, and infected and gangrenous wounds. Doctors, operating under incredibly difficult conditions, have had to amputate limbs from as many as 200,000 people. These doctors have been saying that the earthquake is creating “a generation of amputees.”

    Life with a disability is extraordinarily difficult in Haiti, according to some accounts. A report in the St. Petersburg Times quoted a nursing student who lost a leg after a wall fell on her: “There is no place in Haiti for people like me. Without my leg, I am a freak. Cripples are rejected here. I was going to be the first person in my family to make it out of poverty, but now that’s over. An amputee is not allowed in school.”

    I never like to generalize about other cultures’ views about disability. Instead, I prefer to listen to the voices of disabled people who live within those cultures, and who have developed their own analyses of the issues and the context.

    However, it’s a fact that disability experiences are shaped by social conditions, and it’s hard to imagine conditions worse than what Haitians face now: crushing poverty, mass homelessness, food and water shortages, and devastated infrastructure. We still need to pay attention to, and support, the short-term needs of a people and crisis — but we must also think long-term about the rights and well-being of this new “generation of amputees,” as well as Haitians with other physical and mental disabilities.

    One group that will contribute significantly to disabled Haitians’ quality of life — as it has brought positive benefits to many other countries — is Whirlwind Wheelchairs International. Whirlwind has earned international recognition for designing wheelchairs that can move through difficult terrain, and can be repaired easily using readily available materials. In various parts of Africa, Asia, and Latin America, Whirlwind has helped establish workshops that train and employ disabled people to build the chairs for their communities. Whirlwind’s work is philosophically sound, person-centered, and pragmatic. Now, Whirlwind is raising money to ship wheelchairs from its Mexican factory to Haitians who will need them.

    Americans should continue giving generously, and always respectfully. Let’s not leverage our largess to lecture Haitians on the proper attitude toward disability. Let’s ensure that our aid programs don’t discriminate, or deny access, thus aggravating disabled people’s isolation.

    The growing number of Haitians, on one hand, may mean increased hardship and financial costs to individuals, families, and society as a whole. On the other hand, it may also lead to increased awareness, acceptance, and integration. Disabled people will never again be (if they ever were) a tiny, hidden minority. Every family, every neighborhood, will have members who are disabled. Out of this prevalence may grow solidarity.

    How to Help Haitians?

    “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.

    Jerry Lewis, Oscar-sanctioned “humanitarian”

    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

    Gas Prices and Home Care

    I’ve been working with a health care union to try to improve compensation for home care workers, and to enable such workers to organize themselves to have a voice in public policymaking. I’m concerned that people who are doing such important jobs, providing services that are essential to the well-being and independence of disabled and older people, earn such low pay and receive few or no benefits. They support our health, and they often cannot get health care for themselves or their children.

    Now rising gas prices are putting even more pressure on home care workers, and causing reductions in needed services. According to an article in Saturday’s New York Times, a recent survey by the National Association for Home Care and Hospice concluded that home health and hospice workers drove 4.8 billion miles in 2006 to serve 12 million clients. These low-paid workers are not usually reimbursed for mileage.

    I’ve known home health aides who had to borrow money just to buy enough fuel to get to work. Now that problem is growing, nationwide.

    Not only do high gas prices hurt workers; this phenomenon also further escalates our country’s institutional bias. Nursing facilities gain yet another competitive advantage over home care: Facilities can offer employees eight-hour shifts in one location, in contrast to the multiple trips that may be involved in home care workers’ schedules.

    State and federal Medicaid officials should recognize this, and level the playing field by factoring travel costs into reimbursement rates.