Becky Blitch's Open Salon Blog

How not to educate children about disabilities

Sat, 7 Nov 2009 10:11:43 -0500

I was excited when I saw this article about a Minnesota elementary school holding a Disability Awareness Week:

I've been volunteering at a local elementary school for 5 years, and when I was Ms. Wheelchair Florida (2005) I spoke to thousands of children around the state. Helping kids learn about disability, and about difference and diversity in general, is close to my heart. So I was disappointed as I read this article to see that the group of special ed teachers who designed the week-long curriculum probably did more to introduce or reinforce misleading stereotypes about disability than to dispel them. You guessed it: they played Gimp For A Day.

Students were first read a story about living with disabilities. Next, they traveled around to different stations that featured modified games, sensory helpers, school supplies and athletic activities. ...
When students would sit in the wheelchairs and try to go around cones, many struggled with the task. The students would often try to put their feet on the ground to maneuver the chairs, saying “it’s too hard.” But teachers were patient and gave them pointers.

... Another station featured modified scissors, crayons, pencils, books and computer mice and keyboards. ... [The third-graders] got easily frustrated with a device that had one movable side of a pair of scissors and the other half was secured in a small ramp. It’s used by students who aren’t able to put their fingers in a typical pair of scissors. Another pair would spring back to open the shears.

And so forth.

When thinking about how to raise awareness and promote understanding, it's natural for us to think, "If only they could walk a mile in my shoes..." (pun intended). Putting able-bodied people in wheelchairs, or blindfolding sighted people, or giving hearing people earplugs -- these seem to be logical ways to help people without certain challenges understand what it's like for people who do have them. And these techniques are used all over the world, in every kind of educational and training setting, including in many special education graduate programs.

While Gimp For A Day activities are meant to foster understanding and compassion, people (adults and children) more often come away with pity and/or reinforced stereotypes. The problem is that such activities only mimic the surface of the experience of people with disabilities. Without context or depth of experience, they are bound to fail.

Let's use "taking a spin in wheelchairs" as an example. Using a wheelchair (manual or powered) effectively takes hard work and practice. Wheelchairs are custom-built to each user's body and abilities; even a slight change in the height of the seat or angle of the wheels can make a difference in comfort and ease of use. When I get a new wheelchair, it takes weeks for my brain and body to adapt. But eventually it does adapt, and my chair becomes a natural extension of my body, rarely requiring conscious thought. It's simply laughable to expect someone who has never used a wheelchair in their life to understand that by "taking a spin." Inevitably, just like the students in the article, people find the wheelchair frustrating, difficult, limiting.

An able-bodied person who finds themselves suddenly strapped in a chair is naturally going to feel "confined." But for me, my wheelchair is my freedom; without it, I'd be stuck laying in bed or sitting in whatever chair someone put me in. I remember that feeling as a child, the frustration of being put on the living room sofa to watch tv with my cousins, then being left behind when they all ran outside for the ice cream truck. My first wheelchair was simply a revelation: it was freedom. That kind of context is entirely lost in Gimp For A Day activities. Instead, participants walk away thinking, "Wow, that was really hard -- I could never do that every day! People with disabilities are so courageous/strong!" Or, worse, "Wow, that sucked. I'd hate to be in a wheelchair... it would be so frustrating/sad/hard. Life must really suck for people with disabilities!" Those thoughts may not be conscious, but the impressions and conclusions (even if only on a subconscious level) are nearly unavoidable.

Disability self-advocates protest Gimp For A Day activities in every corner of the country on an ongoing basis. The key isn't just to point out why this approach is so harmful, but to suggest alternatives that actually do promote understanding, connection, inclusion, and acceptance. The best way that I know to do this is simply by getting people with and without disabilities into the same room and opening a space for conversation. Getting people to a place where they feel comfortable asking questions (much easier with children) and then answering those questions honestly and accurately is the best way to share our experiences. This allows us to provide context, to communicate ambiguities, to correct misconceptions. It allows us to connect as human beings, as individuals with unique strengths and challenges.

I'm glad that the folks at Redtail Ridge Elementary School want to create an inclusive community, but hopefully next time they'll have actual people with disabilities help shape their curriculum. We wouldn't expect a group of white people putting other white people in blackface and sending them out on the streets for a few minutes to reveal anything about the experiences of African-Americans (in fact, we'd find it insulting and offensive); likewise, expecting "a spin in a wheelchair" to accurately convey even a slice of the physical, emotional, and social realities of the experiences of people with disabilities is short-sighted and ultimately damaging.

Leave the "SMA Angels" alone!

Sat, 8 Aug 2009 17:08:49 -0400

Spinal Muscular Atrophy (SMA) is a genetic neuromuscular condition that affects approximately 1 in 6,000 live births in the US. People with SMA have a deficiency of a certain protein that keeps motor neurons -- the messengers between the brain and the muscles -- alive; when the neurons die, the muscles they controlled atrophy. The disease has a spectrum of severity; the earlier the onset, the more severe the symptoms. In its most severe form (known as Type 1), SMA is nearly always fatal before the age of 18-24 months. (Weak respiratory muscles make a common cough potentially deadly.) Indeed, SMA is the leading cause of infant mortality due to genetic causes.

But not all people with SMA have such a serious prognosis. I was diagnosed just after my first birthday, and at the time (1981) was given a 3-5 year prognosis. I'm now 29 and am much healthier than most non-disabled folk. I've never had a serious respiratory infection (indeed, I haven't even seen a pulmonologist since high school), and while my muscle weakness is profound (I'm considered quadriplegic), it hasn't significantly progressed in well over a decade. I just finished graduate school (for now) with my MA, and have a full and happy life. There are thousands of people like myself living relatively normal, healthy lives with SMA.

Which is why I'm so irritated by the messages that have been filling up my Twitter feed and RSS inbox over the last week. You see, August is SMA Awareness Month, and it has a higher profile than usual this year because there is legislation pending in Congress to devote a sizable chunk of funding to SMA research. I'm all about awareness and advocacy; I've got a meeting with my own US Representative to lobby for the legislation next week. What I do take issue with is the extent to which the "awareness" focuses on "SMA Angels" -- babies/children who have passed away.

The "Angels" constituency -- parents of deceased or seriously affected babies -- dominates the conversation about SMA, both online and out in the world. Tonight, for example, is a national candlelight vigil (a la 9/11 or Katrina) to honor "SMA Angels." I recognize that by saying this I'm inviting controversy, but I can't help but feel that this whole SMA Angels movement exploits the deceased children themselves and damages the work of those of us in the disability community who are trying to shift the focus away from the medical model of disability and towards a more celebratory, life-affirming narrative.

When I was a child, I was a state poster child for the Muscular Dystrophy Association for 3 years, during which time I was outright exploited. The overt message was "Look at this cute little girl in a wheelchair -- she's going to die if you don't phone in and donate money!" No one stood up for me back then (although I've learned as an adult that my parents did feel uncomfortable but somewhat powerless to protect me). Now I'm the adult, and I can speak up for these babies. Each of them was a unique, wonderful spirit. It is dehumanizing and degrading to frame their lives solely in terms of their DNA and their deaths -- particularly when the stated goal is to pass legislation and raise money. The fact that it's the parents who are so active makes it even more wrong in my mind -- they, of all people, should know better.

A win for us all

Wed, 5 Nov 2008 16:11:12 -0500

The media today is (as one might have expected) putting much of its focus on the racial aspect of Barack Obama's historic win. I understand that, I empathize with that. Some of my tears last night (and today) were shed for my dear friend T's three boys, all of whom are extraordinarily gifted, and who now really know that anything is possible, regardless of the color of their skin.

It's important to hold and honor that aspect of Obama's victory. It's also important to acknowledge that this isn't a win just for Black people.

It is a win for all people of color, for queers, for gimps, for young people, for women, for academics and scientists, for 1^st generation Americans. It is a win for all people who have been oppressed and disenfranchised, historically or just during the past 8 years.

For we who have been systematically excluded from the political process (because we are not straight, able-bodied, middle-aged rich male WASPs), this victory is proof that we can join together and change the world.

I live in a swing precinct of a swing county of a swing state (Pinellas County, FL—the St. Petersburg/Clearwater metro area—I'm in the west-central part of the county, the absolute end of the "I-4 corridor").

I am a lesbian quadriplegic. The policies of the last eight years have prevented me from living independently, from getting a job without losing my health care. So I fought for Barack Obama. I made hundreds of phone calls, I went along on canvassing shifts to keep my door-knocking friends company, I marched in the St. Pete Pride Parade on the hottest f'ing day of the year.

My hard work, and that of the thousands of other Obama volunteers here, paid off: We turned Pinellas, and Florida, blue.

And today we are not just vindicated, but empowered. We know, now, how to organize ourselves. And we know that we can truly make a difference. Our communities are now more communal, our voices more united. We have had this power all along, but Barack showed it to us. That is a gift whose repercussions will still be felt years from now.

So yes, by all means, we must acknowledge the history being made with our first Black President (and First Family). This is a win for African-Americans. But we can't stop there, because to do so would be to disregard Barack Obama's real message and importance. This is a win for America. This is a win for democracy. This is a win for those who value peace and common sense.

This is a win for us all.

"If there is anyone out there who still doubts that America is a place where all things are possible, who still wonders if the dream of our founders is alive in our time, who still questions the power of our democracy, tonight is your answer.

"It's the answer told by lines that stretched around schools and churches in numbers this nation has never seen, by people who waited three hours and four hours, many for the first time in their lives, because they believed that this time must be different, that their voices could be that difference.

"It's the answer spoken by young and old, rich and poor, Democrat and Republican, black, white, Hispanic, Asian, Native American, gay, straight, disabled and not disabled. Americans who sent a message to the world that we have never been just a collection of individuals or a collection of red states and blue states.

"We are, and always will be, the United States of America."

Transcript: Obama's Acceptance Speech

An Open Letter to Rachel Maddow

Tue, 4 Nov 2008 08:11:08 -0500

To Rachel,

You've been in the press a lot lately. A recurring theme in those pieces is your struggle with whether being a television pundit is a worthwhile occupation, whether it makes enough of a difference in the world. Some pieces frame this as humility in the face of your new-found fame, others as a more existential Big Life Question™. I suspect it's closer to the latter.

You clearly didn't ask for my opinion on the matter, but I'd like to share it anyway: You are making one hell of a difference. You are, in a very real way, changing the world.

Your impact is partly about reigniting the progressive movement, reminding us that to get anywhere we need to be intelligent, articulate, and thoughtful in our arguments, grounding us in an intellectual framework. But that's just part of it.

A quick sidebar to tell you about myself is in order. I'm 28, lesbian, and quadriplegic. I'm smart, really smart—not bragging, just being honest. I have a burning desire to do something Meaningful™. I often think that if it were not for my disability, I'd be in the Peace Corps or teaching in an underserved community or working 100 hours a week writing grants for a struggling nonprofit. Physically and financially, those dreams are simply out of reach in this lifetime, and I've wrestled with depression for many years as I've come to accept that. Now I'm wrapping up an MA in Transformative Leadership, and contemplating how I can create a meaningful life that makes a difference. Doing so will require creativity, flexibility, and faith.

There are thousands, maybe millions, of people whose life stories are variations on this theme. Outsiders who are grounding themselves in their outsider status rather than assimilating; true agents for change who are learning to work with what they've got rather than bemoaning what they don't.

This is where you come in. You, Dr. Maddow, give us hope. You are one of us, and you're proving that we can succeed in a world that seems to value everything that we are not. Your success is the antidote to all of those other messages and pressures that would seem to limit us.

So are you sleeping under a mosquito net in sub-Sarahan Africa, working to limit the transmission of HIV? No. But you are inspiring a whole generation to do so—or to teach, write, enter academe, enter politics. Just by being on our televisions every night (or our iPods every morning), you are encouraging thousands of people like me to play to our strengths and fight for what we believe in.

If that's not making a difference, I don't know what is.

In peace and admiration,
Becky Blitch

Sarah Palin’s “Special Needs Children” Policy Address

Fri, 24 Oct 2008 10:10:23 -0400

As you know, when Sarah Palin first came onto the national stage, I was highly critical of what I perceived to be pandering to the disability community in light of the complete vacuum of policy proposals in this area by her running mate.

This morning, the Republican Vice-Presidential candidate gave her first major policy address, and it focused on the issues facing families of children with special needs.

After listening to the speech, I feel it's necessary to revise and renew my criticism of the ticket.

To begin, I loudly and heartily commend Gov. Palin for bringing the national spotlight to this issue. We need all the help we can get.

Generally, within the relatively narrow scope of the speech, the specific policies offered were spot-on. Specifically, the emphasis on fully funding the IDEA and reforming Voc Rehab is welcomed. (Although how, exactly, that squares with Sen. McCain's call for a spending freeze is unclear.)

With that said, both the content and the general tone of the speech infuriated me.

First, by going off on impassioned tangents about earmarks and Obama's tax plan, Gov. Palin gave the impression that this speech was merely cover for stump-speech attacks, belittling the importance of the topic at hand.

Second, it's worth noting that absolutely no new territory regarding disability policy was covered in this speech. Given its length, there was very little red meat. In fact, at the beginning, Gov. Palin said she'd be offering three specific policy points, but after watching the speech a second time, I'm still unclear as to what those points were.

Third, while I absolutely agree and understand that changes need to be made for children with disabilities, we must remember that those children do, in fact, grow up. There are millions of adults with disabilities in this country (many of whom acquired disability after childhood, including thousands of veterans), and we are all too often left out in the cold. Sarah Palin said that she and John McCain would support finding ways for adults with disabilities to live independently, but McCain has rejected the Community Choice Act, which would do precisely that.

Fourth, Palin's speech did little to honor the dignity of people with disabilities. We in the disability rights movement have been fighting for decades to be seen and treated as full human beings; we have fought to make people understand that just because we have unconventional bodies, we are essentially—in the things that matter—just like everyone else. Palin, however, pushed the human-interest angle, gushing about how "blessed" families are to have such "special" children. The "Inspirational Gimp" and the "Blessed Gimp" are stereotypes whose time is long gone, thankfully. But Sarah Palin seems determined to resurrect them.

I could go on at length about the very necessary policies and programs Palin ~~could~~ should have endorsed while she had the spotlight on this issue: Respite services for caregivers. Health care reform. Stem cell research. Medicaid reform around durable medical equipment. The UN Convention on the Rights of Persons with Disabilities. Supreme Court decisions that decimated the ADA. And on and on and on …

Let's face it: John McCain and Sarah Palin are losing this election. The governor could have used this moment to "pull a Bullworth" and make some bold statements about where this country really needs to go in terms of disability policy. She didn't. She stuck to a couple politically safe proposals, she attacked Barack Obama, and she got misty-eyed over the special-ness of special needs kids.

That, my friends, is called pandering. Nothing new about it.

Read Barack Obama's policy proposals for disability rights issues.