Teenage girls hate difference, and their mothers.
They want concave bellies, current fashion,
and to fit in. That was my fear, and her other
mom’s: that she might despise our dyke passion,
our wheelchairs, Robin’s speech, my respirator,
or her own awkward tender girl body.
Would the pride we’d model vaccinate her
against surface standards? But she came ready.
She wears mismatched florals, ignores trends,
has bold prints and slogans in her wardrobes.
She brags and introduces us to friends,
oblivious to ableists and homophobes.
She’s nonconformist, even more than us.
“There’s my moms!” she tells the kid beside her on the bus.

Copyright 2010 by Laura Hershey

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.

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:

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.

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.

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:

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.

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.

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?

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

Copyright 2010 by Laura Hershey

Ten days each spring, we woke
to the smell of salt water, seaweed,

eggs my Dad fried in butter,
and fresh orange pulped by Nana.

Before ten a.m. we wore the scent
of sun tan lotion, and tumbled out the door

where the Gulf welcomed us with waves
tendering gifts: conch shells, sand dollars,

tiny clams which opened into pink hearts
or angels’ wings spread for flight.

On folding chairs and big beach towels
we ate peanuts, cheese sandwiches, more oranges.

We did homework — price of missing
three days’ school — halfheartedly,

equations and penciled solutions blurring
amid glare on white pages.

All day, from low to high tide, and back, we slid between
land and sea, let the surf pound and pull at us,

let the sun dizzy us, built castles
of shovel-packed sand walls and drizzled spires

with moats Dad dug deep enough
for my dangling legs.

Can I now, forty years later, grieve
that same seawater? How many times since then

has it evaporated, and fallen? How many hundreds
of generations of mollusks and minnows

have lived and died naturally between that beach
and the sandbar we rafted to at low tide?

In no sense are they mine to mourn –
but neither can I claim innocence.

The flights I board, my craving for cool air,
all my habits of comfort and consumption

learned on family vacations, loved
for a lifetime, joined to billions of others’ hungers,

led to drilling in that Gulf, a hole in its heart,
to take what lay within.

Now, I watch remote live feeds
of unstoppable hemorrhage, technology

helpless to reverse its own mistakes,
dark plumes choking Gulf currents,

and I grieve for fishing families, for endangered pelicans
and bluefin, for eleven dead workingmen.

But my soul aches for what I have not seen
for many years, and what might be lost:

long days on the beach, solving simple problems,
dreading only the end of spring break, until next year.

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.

This thoughtful post, entitled “Childhood, Disability, and Public Space,” discusses the negative judgments made by some nondisabled adults about behaviors sometimes exhibited by children, and/or by adults with developmental disabilities. The writer is careful to emphasize that she does not mean to imply that adults with DD are childish or childlike. Rather, she is concerned about the different and related prejudices that both groups face when venturing into public places.

This piece resonates with me on several levels. I have a daughter, just on the cusp between childhood and adulthood, who carries several labels including DD. She is gregarious and fun-loving, and loves to go to museums, plays, sporting events, and other activities that take place in shared public venues. Most of the time, when we’re out and about, she is courteous and perfectly appropriate… sometimes, not so much. At these times, she talks too loudly during a performance, or eats messily while her napkin remains pristine, or yells at her parents for trying to correct her. Her other mom and I work with her to learn good social skills, and she’s making real progress, but I’m aware that there are people out there who think kids like her should just stay home.

I’ve read news stories about families getting kicked out of movie theaters because of sounds made by their autistic children. I’ve heard of restaurant patrons requesting a different table because they didn’t want to watch a disabled person eat. I’ve seen signs posted in stores, making supposedly funny threats against children who misbehave.

I know that we all have certain expectations when we go shopping, or buy a ticket to a performance. In any society that aspires to freedom and equality, those expectations need to include the variations in atmosphere introduced by people of different ages, abilities, cultures, and so on.

I myself am a very noticeable presence in any public venue. I use a power wheelchair which I operate by blowing into a tube. I have more tubes going into my nose, connected to a mechanical ventilator, which pumps air into my lungs as I breathe. At symphony orchestra concerts, during pianissimo passages, I’ve become acutely aware of the mechanical sounds emanating from my respiratory equipment. My self-consciousness has sometimes veered close to embarrassment, but I’ve reminded myself that I have as much right as anyone to be in the presence of that great music.

I go so far as to believe that I make an important contribution to those public gatherings, even when I am merely a customer, a passerby, or an audience member. I help to demonstrate, without fanfare, that all kinds of people get around in the world in all kinds of ways. Everyone is not the same. Some people make unusual noises. Some look, move, or act a bit differently. Some people even breathe differently. That’s one of the things I want my daughter to learn when we go out — though it’s clear to me that she already knows that, more comfortably and more generously than most people.

The blogger at Student Activism, who is nondisabled and a parent, makes the following important point:

“Public space is not our space. Children, the elderly, and people with disabilities don’t use parks, restaurants, stores, museums, and theaters at our indulgence, because it’s not our space. It’s everyone’s space, and everyone has an equal claim on it.” (Emphasis in the original.)

That’s why we need accessible buildings and buses. That’s why we need welcoming businesses and cultural facilities. That’s why we need to re-commit to the idea of real community.

It’s even more complicated for the “other” side’s casualties. Today I ran across this article on the website Voices for Creative Nonviolence.

It’s a well-written, mostly pity-free profile of a young Afghan man who became disabled as a result of U.S. air attacks. He is in Pakistan now, working hard to rehabilitate with the goal of reintegrating back into his own community someday, but the war is a major barrier to this goal.

This article offers insight into day-to-day issues facing ordinary disabled people in different parts of the world. And it manages to avoid the melodrama that peace advocates sometimes invoke when talking about disabilities caused by war.

Even as we fight our own critical battles for civil rights and essential support services, disability rights activists must be aware of the impact of our government’s military actions on people with disabilities across the globe.

Read the article here.