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Disability Culture

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.
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    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.

    More Thoughts about Public Space

    A couple of months ago, I wrote a blog post about intolerance toward the presence of certain bodies and behaviors in public space. I probed the experiences of those of us who enter public space with non-conforming bodies, bringing along a distinct and, to some, disturbing set of sounds, images, and ways of moving.

    Recently, I’ve been thinking about the flip side of encounters in public space. Rather than thinking about the impact on public space of people with marginalized bodies and behaviors, I’m noticing how people with privileged bodies use and affect public spaces. By privileged bodies, I mean those that are considered normal, acceptable, powerful. Examples include bodies which move easily without any mobility aid or device; bodies which need no personal assistance to navigate or inhabit public space; bodies which pay full admission or are otherwise “invited in”; bodies whose lived experiences up to that point have included comfort, security, education, financial success, health, and the esteem of others; bodies of standard size, shape, attire, gender presentation, age, and mannerisms; and bodies without any visible illnesses, injuries, disabilities, or other deviations. Most public spaces are designed for these privileged bodies, and so they “fit” easily in those spaces.

    In settings ranging from streets to airports, from meeting halls to botanic gardens, from movie theaters to buses, I have observed some of the interesting ways that privileged bodies conduct themselves in public space. These are generalizations of course, and only meant to illuminate some differences in expectations and experiences of privileged people, as compared with marginalized people.

    Privileged bodies move through public spaces comfortably and assertively. They encounter few obstructions in the built environment. Rarely are they challenged, either physically or verbally, when going through a doorway into a bathroom, a mass transit vehicle, an exhibit area, a store, a restaurant, or an office building. They do not have to duck, scrunch, squeeze; they do not have to use a back door or a side door, waiting while someone opens it for them. They do not have to scan the ground in front of them for bumps or ruts, nor do they have to search for the one ramp on a long sidewalk or into a large building. They easily operate controls such as door openers, elevator buttons, turnstiles, kiosks, phones, intercoms, change slots, etc., and so these things do not slow them down. They do not attract negative or unwanted attention.

    Given these privileges, taking them for granted, people with privileged bodies have a propensity for certain behaviors. Consciously or unconsciously, they choose their actions based on their assumptions about belonging, access, comfort, power, and acceptance. Here are a few of my specific observations of the behavior of privileged bodies in public space:

  • Privileged bodies tend to move through public spaces with limited consideration of the presence of other bodies.
  • Here is a typical scene: A pair or group of people stand off to one side, next to a flow of pedestrian traffic. One member of the pair or group is departing from the group, talking animatedly while walking backwards directly into the flow of pedestrian traffic. All her attention is directed to her conversation, yet she does not slow or stop her backwards walking, nor turn to look behind or around her. People going with the flow of traffic are forced to slow, stop, or go around her in order to avoid a collision. Privileged bodies within the flow find it relatively easy to do so, unencumbered as they are with impairments, mobility devices, children, etc. But someone unable to see well or walk quickly, or someone maneuvering a wheelchair through the human labyrinth, or someone pushing a stroller, is much more vulnerable to that hazard. If a collision were to occur, the privileged person might be injured, might be indignant, but the less privileged person is likely to suffer greater harm. As a result, people with less privileged bodies (i.e. marginalized bodies) tend to adopt the opposite behaviors: They/we pay constant, close attention to other bodies moving through and near our space, staying always aware of obstacles, sudden moves, and unexpected alterations in the human environment.

  • Privileged bodies tend to appropriate the most desirable spots in public spaces, based not on need but on comfort and convenience, undergirded with a sense of entitlement.
  • For example, sometimes I have gone into a lecture hall or movie theater — any type of environment furnished with auditorium-style seating, i.e., rows of chairs with a few aisles running at intervals between the rows. I am often accompanied by my personal assistant, who walks, and who will need a place to sit. I need to sit in my wheelchair, adjacent to my assistant’s chair so that she can help me when needed. So for me, getting a seat at the end of a row is a necessity. Similarly, people whose disabilities make it difficult to squeeze through the row to a middle seat, or who need to park a wheelchair or a walker in the aisle and transfer into a seat, or who expect to need to get up frequently in order to take care of chronic pain or bathroom needs — these people and others have a strong, legitimate claim on the end (aisle) seats. Yet when I go into a hall which is, say, one-third to half full, I almost always find that the aisle seats have been the first ones taken — mostly, I believe, by people who want them, not by people who need them. In general, these are not malicious acts; in fact, they are not even conscious acts. They are simply the unconscious choices of people who have become accustomed to their bodies being privileged by the designs and practices of public space.

    In fact, when certain more accessible, and therefore more desirable, seats or other spots are formally reserved for people with visibly aged or impaired bodies — such as the front seats on public buses — most (though not all) people with privileged bodies will respect those rules and conventions, if reminded by signage or by verbal request from someone in authority. But in the absence of such reminders, they automatically choose the best spots for themselves.

  • Privileged bodies in public space tend to express themselves fully and unabashedly — but also with a sense of propriety and restraint that is more instinctual than calculated.
  • They do not make vocal sounds that might be regarded by others as “weird” (as an autistic person might), because they feel no urge to do so. But many appear to have no qualms about speaking loudly enough to dominate a conversation, and even the area around it. Similarly, privileged bodies tend to dress, gesture, laugh, hug, kiss, touch people, touch things, activate mechanical devices (cell phones, watches, etc.) with complete ease and aplomb — but also within strict parameters that they have learned so well that they need not think about them. They expect no rebuke, blatant or subtle, because they are highly skilled in censoring themselves as a cost of maintaining their privilege. They do not, like many people with marginalized bodies, expend much mental energy worrying about audible or visible bodily manifestations that might result in banishment, ostracization, disapproval, or other penalties — because they have the ability to “control themselves,” i.e., to present and conduct themselves in socially sanctioned ways.

    I would be very interested to hear the reactions of various people to what I have written here. Do you move through public space in a marginalized body, or in a privileged body? Do your observations correspond with what I’ve noticed in my forays through public spaces? What about your behavior? Do you make the kinds of choices I described above, based on your bodily status? Or do you deliberately buck those conventions? Do you experience privilege in some settings, and marginalization in others? What do you think?

    From the Archives: Old Poem, “You Get Proud By Practicing”

    In honor of LGBT Pride Month — and to honor and encourage all kinds of people embracing the risks of visibility and pride — I decided to re-post a very old poem of mine. It remains a favorite of mine, and of lots of other people. It’s been reprinted in a number of places, most recently in an anthology called Fire in the Soul: 100 Poems for Human Rights. It speaks of the right to feel proud, and offers some exercises for achieving pride.

    YOU GET PROUD BY PRACTICING

    Copyright 1991 by Laura Hershey

    If you are not proud
    for who you are, for what you say, for how you look;
    if every time you stop
    to think of yourself, you do not see yourself glowing
    with golden light; do not, therefore, give up on yourself.
    You can
    get proud.

    You do not need
    a better body, a purer spirit, or a Ph.D.
    to be proud.
    You do not need
    a lot of money, a handsome boyfriend, or a nice car.
    You do not need
    to be able to walk, or see, or hear,
    or use big, complicated words,
    or do any of the things that you just can’t do
    to be proud. A caseworker
    cannot make you proud,
    or a doctor.
    You only need
    more practice.
    You get proud
    by practicing.

    There are many many ways to get proud.
    You can try riding a horse, or skiing on one leg,
    or playing guitar,
    and do well or not so well,
    and be glad you tried
    either way.
    You can show
    something you’ve made
    to someone you respect
    and be happy with it no matter
    what they say.
    You can say
    what you think, though you know
    other people do not think the same way, and you can
    keep saying it, even if they tell you
    you are crazy.
    You can add your voice
    all night to the voices
    of a hundred and fifty others
    in a circle
    around a jailhouse
    where your brothers and sisters are being held
    for blocking buses with no lift,
    or you can be one of the ones
    inside the jailhouse,
    knowing of the circle outside.
    You can speak your love
    to a friend
    without fear.
    You can find someone
    who will listen to you
    without judging you or doubting you or being
    afraid of you
    and let you hear yourself perhaps
    for the first time.
    These are all ways
    of getting proud.
    None of them
    are easy, but all of them
    are possible. You can do all of these things,
    or just one of them again and again.
    You get proud
    by practicing.

    Power makes you proud, and power
    comes in many fine forms
    supple and rich as butterfly wings.
    It is music
    when you practice opening your mouth
    and liking what you hear
    because it is the sound of your own
    true voice.
    It is sunlight
    when you practice seeing
    strength and beauty in everyone
    including yourself.
    It is dance
    when you practice knowing
    that what you do
    and the way you do it
    is the right way for you
    and can’t be called wrong.
    All these hold
    more power than weapons or money
    or lies.
    All these practices bring power, and power
    makes you proud.
    You get proud
    by practicing.

    Remember, you weren’t the one
    who made you ashamed,
    but you are the one
    who can make you proud.
    Just practice,
    practice until you get proud, and once you are proud,
    keep practicing so you won’t forget.
    You get proud
    by practicing.

    By the way, if you would like to order a poetry chapbooks, audiotapes, or poster featuring this poem, “You Get Proud By Practicing,” you can email Laura at laura@laurahershey.com or send a check for $10 per item to:
    Laura Hershey
    P.O. Box 11215
    Englewood, Colorado 80151

    “Music by Prudence” Profiles a Powerful Voice

    I just watched this year’s Oscar-winning documentary Music by Prudence, which profiles Prudence Mabhena, a 21-year-old Zimbabwean singer. Growing up with a disability called arthrogryposis, which significantly limits her physical mobility, Prudence has had to defy low expectations and vicious prejudices just to survive. Rejected by her parents and her culture, Prudence finally, literally found her voice when she began to sing. With several of her classmates at a school for children with disabilities in Bulawayo, Prudence has formed a band called Liyana.

    With subject matter like this, some filmmakers would turn out a sappy story of overcoming personal tragedy through cheerful courage. But director Roger Ross Williams has made a film that’s more complicated, and far more interesting. Prudence herself is no plucky poster child. She’s angry — understandably so — even unforgiving of the parents and others who gave up on her when she was just a child. (On the other hand, she honors the grandmother who loved her, raised her, and taught her to sing.)

    And Prudence does not succeed strictly through individual effort. She’s surrounded by her friends and bandmates, all young people with disabilities. In the film we see them encouraging and supporting one another. They laugh together, travel together, and create together. They express to each other their rage against the oppression inflicted on them, often by their own families. Even their clothing conveys solidarity and challenge: In several scenes the musicians sport, like cheeky uniforms, T-shirts that simply say, “SO WHAT?”

    This is not an easy movie to find, unless you’re an HBO subscriber; it premiered there last week, and will be broadcast throughout this month. The DVD has not been released yet. The movie is playing at a few film festivals around the country, and you can purchase and download the soundtrack from iTunes, Amazon, etc. My advice: See it; hear it; pass the word. Get more information at the Music by Prudence official movie website.

    As for myself, I’m adding Music by Prudence to my list of all-time favorite disability-related documentaries.

    Machines

    I woke up with this thought today, and decided to write it down, illustrate it, and put it out there in cyberspace.

    I'd rather have a machine breathe for me...

    Some Progress, but Wrong Priority

    I just read this —
    http://www.whitehouse.gov/blog/Accessibility-and-the-Arts/

    As a cultural worker, I’m excited to see the White House promoting accessibility to the arts. But I wish they’d get real, and give this high a profile to the issue of community-based long-term services and supports! If you are stuck in a nursing home, or don’t have help to get out of bed in the morning, it’s awfully hard to paint a picture or attend a symphony concert.

    Maybe we need to start a movement of Disabled Artists for Community Choice! Would the administration start listening then?