Electric EDGE
Web Edition of The Ragged Edge
May/June 1997
Electric Edge


Awareness Days Suck

Regarding Valerie Brew-Parrish's fundamental point that "awareness days suck," we say "right on!"

The local community college has held well-publicized awareness days. They also held a diversity forum which we had to enter via a catacombed back entryway and sit separate from the audience. They also resisted hiring interpreters for classes and had a teacher say that a disabled student with a speech impairment might distract other students.

We've countered with our own awareness methods: ADA complaints, news conferences and pickets.

Staff of the Cape
Organization for Rights
of the Disabled
Hyannis, MA

(the letter was signed by 8 staff members)

[E] I couldn't agree more with Valerie Brew-Parrish's article! I, too, think that putting someone in a wheelchair or blindfolding them for 20 minutes or so sends all the wrong messages.

I recently had an encounter with an "ADA Advisor" for a local transit agency who told me that he knows all about using a wheelchair because he actually did use one for two whole days! Boy was he surprised when I immediately asked if he'd also worn black-face to learn racial sensitivity or put on a bra to learn all about women's issues. The fact that his agency (at his direction) is still requiring people to lock their wheels on the bus lift, and grabbing and pushing chairs without permission, shows just how much he "gets it!" They don't even operate 100% accessible buses on designated accessible routes.

If we see ourselves as a minority group (as I believe we must), then we need to be the experts on disability issues. For far too long we've allowed and even relied upon TAB's to be the experts on disability issues. We need to take possession of the language and ideas that are about us. An excellent quick test of real sensitivity to our issues is to ask: how would it play if it were about a racial or gender minority? Would anyone even think of using black-face to teach racial sensitivity or 'drag' to teach people about gender? Then they shouldn't be doing essentially the same thing to us.

Thanks for getting it right!

W. Carol Cleigh
Evanston, IL

[E] I agree that most simulations do not accurately depict life with a disability. I would love to see people try to negotiate the local mall or hail a taxi while posing as a disabled person. I feel that to fully understand life with a disability, nondisabled people should encounter the physical and attitudinal barriers that disabled people encounter on a daily basis.

I also believe that many people would rather praise our "courage" in overcoming barriers instead of trying to eliminate them altogether.

Kathy Kulesza
Worcester, MA

Still ...

We would like to offer another perspective than the one presented in "The Wrong Message." As rehabilitation professionals, we have both participated in opportunities to use wheelchairs in the community. For one of us, it was in the traditional gimp-for-a-day format; for the other, it was a much more low- key, non-publicized event. We both found the experience to be valuable because we were enlightened regarding the incredible number of barriers that still exist for wheelchair users in our communities.

The lessons that we both have learned have made us much more conscious of the need for barrier eradication. We in no way want to participate in events that are disrespectful to those with disabilities, and many of the points made in Valerie Brew-Parrish's article are good ones. We certainly agree that a low- key, no-publicity approach is preferable to a widely publicized event, but we are not sure that the entire idea of experiencing disabilities needs to be eliminated.

Jill L. Sandford
Connie Offutt
Visalia, CA

But they do!

[E] Awareness days as they're usually done certainly do suck. That's very true. But the gimp community could take the opportunity presented by awareness days to get people to learn something important.

It's been my experience that awareness days are bad when the people running them have the old ideas of "overcoming" and "challenge." When people think this way, they overtly, or subtly, send that message to the people who participate. If these kinds of folks are in charge, the Awareness Day will have the exact result Brew-Parrish says it might.

But if we could have an activist agenda for Awareness Days, they might work to our advantage. For example: Why not put a few officials in wheelchairs, but explain to them first, very clearly, that the barriers they encounter getting out of the building they are now in exist because the building is in violation of the ADA; that the curb they will have trouble getting over is also illegal under the law. I could even see a brochure and a press release saying these very things, naming specific barriers in the community. In other words, put their experience into an activist context for them; don't expect them to figure it out on their own. And filing an ADA complaint or lawsuit that very day in connection with the "awareness" gimmick would be a good way to make them remember something different than the old awareness days they're used to.

I urge any gimp who finds herself forced to help organize an Awareness Day to try this new wrinkle and see what happens.

Marjorie W. Burns

[E] I looked at the article on "The Wrong Message" and I must say I agree with everything stated. I do Cerebral Palsy, However; it does not define who I am. In my life I am Husband, Dad, Employee, Junior High Youth Leader, PTA Parent, (Mad man in the tree with a chainsaw) whatever.

Ronald Sheppard
Clovis, CA

[E] I loved Valerie Brew-Parrish's article. I always struggle with Disability Awareness Days. Oddly enough I always seem to be the only one with a problem with such exercises. I'm delighted to see that my feelings and views are not so unique.

About the Christopher Reeve hoopla: It's been my experience that persons who become disabled later in life go through many developmental changes. So my request is that we view Mr. Reeve as a "baby" going through the infancy of development, so to speak -- learning how to be a person "differently abled." For all of us with years of experience he may push a button, but remember: we have the experience and he is just now learning. In time he will become aware of our important buzzwords of acceptance, inclusion, access and independence, and move away from the singular wait-for-a-cure solution.

Fred Deaton

New magazine?

[E] What's this -- a new disability magazine? No, my old favorite is back! I like the new look, especially the title (it even slipped past my boss, who forwarded to me). The old title conjured up two images for me: one a feminine hygiene product and the other that of people with disabilities whining. Upon reading your fine magazine I can clearly see you haven't lost your edge.

Please continue your great job of keeping us informed about Justice for All, Not Dead Yet, ADAPT and others who band together in support of our civil rights. I'd also like to hear more about People First and Self Advocates Becoming Em-powered.

Just found your web site --can't wait to explore it!

Marcus Cassady
Rockford IL

Hey folks: our website is at http://www.iglou.com/why/edge

Thanks for 'Algae'

Thank you for sharing Raymond Luczak's poems in the March/April issue. I was particularly struck by the imagery and poignancy of Algae. The impact of this poem, especially in this era when many of us have deaf friends who died from AIDS, is extraordinarily powerful.

Arthur O. Washburn, Ph.D.
Amity, OR

Disabled enough?

In the most recent issue of Ragged Edge, as I have seen so often in disability publications, a jab is made at people with hidden disabilities who use parking spaces reserved for people with disabilities. In this case, Bill Bolt ("Who's Counting?" March/April) makes reference to "people using the spaces [who] don't appear to be disabled enough to warrant them -- though they are using placards."

I find this particularly ironic in light of the situation I now face. First, let me describe my disability so we can get the question of whether I am "disabled enough" out of the way. Because of my disability, I am unable to work; to do my own grocery shopping, cleaning, or errands; to leave my house except on rare occasions (partly because of my disability and partly because there are so few places that are accessible to me); or to walk for more than two minutes or to sit up for more than half an hour or an hour at a time.

When I am able to leave my house, I always have to wear a filter mask. This makes me "disabled enough" for people to stare at me, ask me questions, be scared of me, or be overly solicitous or rude. However, because I am not using a mobility aide, I suspect I "do not appear disabled enough" for folks such as Mr. Bolt. Sometimes, when I am lucky, I am able to go out in a wheelchair if I have an able-bodied person there to push me. But, like most disabled folks, I'd like to be more independent and less isolated than I am, so I have been looking into getting a scooter (A visible mobility aide! It will have the added bonus of making me "appear disabled enough"!).

However, to my dismay, I have discovered that I am "too disabled" to use a scooter! Because of my disability I cannot tolerate the materials used in the chair part of the equipment, nor the battery pack that is used to power it. So I am stuck inside my house still.

When I applied for an HP placard I had to wade through several rounds of bureaucratic donkey-doo because, even though my disability limited me to the extent required for the placard, the Registry employees (who have visible mobility impairments) just didn't want to give it to me. Eventually, because I was right, persistent, and lucky, I won out.

I am looking into getting an oxygen tank so that I will (hopefully) be able to go out more often and to more places. I think if I am wheeling an oxygen tank around, I will probably "appear to be disabled enough" to use an HP parking space. But I don't have it yet, so in the meantime I guess I am still not "disabled enough" and should shoulder the blame for any nasty stares or comments I may get from other disabled or nondisabled folk for exercising my hard-won rights.

It is hard enough to face the ignorance and oppression of the able-bodied world; it is really painful and frustrating to face the same attitudes in a disability rights forum. I understand why accessible parking is such an issue -- there are too many people who need the spaces, and not enough spaces available. When so many people have a legitimate need that is not being met it is convenient to look for scapegoats, but attacking other disabled people ultimately makes us weaker and less effective activists for more parking spaces or for any other right.

Sharon Wachsler
Somerville, MA

More on the topic of not
seeming "disabled enough"
in our July issue. -- ed.

Whither activism?

I have become increasingly concerned with the direction of present-day disability activists. Here in Minneapolis-St. Paul, the activists were upset because Courage Center, a local social service agency, gave Christopher Reeve one of its yearly awards for his advocacy work on behalf of "the disabled." Courage Center also paid Reeve a $70,000 speaker's fee.

All the activists wanted, they said, was for Reeve and Courage Center to devote some of Reeve's speech to broader issues than the activists assumed Reeve would cover. An agreement was not reached, and so the activists picketed the awards dinner.

At the same time, much of the premiere issue of Ragged Edge was devoted to doctor-assisted suicide. Writers, editors and activists seem to take the stance that there are only two courses the courts can take: make doctor- assisted suicide legal, or make it illegal. Ragged Edge was for making it illegal.

What is troubling to me is the amount of time and energy our present-day activists here in the Minneapolis-St. Paul area seem to be expending in their attempts to force their attitudes on others. When people with disabilities organized in the early 1970s, we organized because we were tired of being told what was best for us and how we should feel -- grateful -- about all the great things that were being done for us; we thought we were in a much better position to know what was best for us.

Nationally, too, our disability activists seem to be operating out of an either/or perspective: In the fight against Kevorkian and the whole issue of physician-assisted suicide, there seems to be no willingness to consider possible alternatives or safeguards.

In telling people with and without disabilities what their attitudes about disabilities should be, we are acting from a position of powerlessness rather than the one of power and strength that we assumed back in the early 70s. We are reacting rather than acting. Rather than struggling for changes in our society that will allow us to take our rightful places, we seem to have decided we must first force others to have "right attitudes." Although we want the power to direct our own lives (which, of course, includes death), we want to take that power away from others.

Could it be that in wanting to direct the attitudes, lives and deaths of others we are only expressing our own low self-esteem and our feelings of powerlessness? If we allow Christopher Reeve his own dreams and hopes about being cured, then does that make those of us who really embrace our disabilities "less than?" If we allow others to make their own decisions to participate in active or passive physician-assisted suicide, then does that make our lives as persons with disabilities any less valuable?

Each of us must answer these questions for ourselves. For me, though, it's time for us to assume the power that is already ours and to learn from other groups -- racial minorities, lesbians and gays, seniors, women. The activism of these groups is successful, while our community doesn't yet seem to understand that the attitudes of the larger community will change only as we demand and take our rightful places in our society -- and as we accept the responsibility of those places.

Let's study the community-organizing philosophies and techniques of Martin Luther King, Jr. and Saul Alinsky. Let's get the community organizing training we need to effectively define and address our actionable issues and to sort out the inactionable ones (like forcing our attitudes on others: we only have power over our own attitudes). Let's get on with the business of taking our rightful places in society.

Audrey Benson
"retired" disability activist

What next?

[E] We all know disability services have to trickle down -- well, we found the bottom! I am a caregiver to the only survivor of a critical injury on a U. S. Forestry timber cut here in the Ozark National Forest. They tell us there are no resources to tap into.

He's a C3,4,5,6,T1,2, L4,5 quad. The prognosis was that he should be dead in 18 months to 2 years.

The state insisted that he be moved to a nursing home -- and if he chose to return home, he would get no help. It's now 10 years later. We proved that an error by Social Security deprived him of the needed therapy for his recovery. Now the state insists that while his Social Security may be in correction for 10 years of qualified disability, he now gets $1 a month too much to qualify for Medicaid -- because his daily care is not a legitimate medical expense, since he is at home rather than in one of their nursing homes.

Our state has the auspicious ranking of no. 1 in institutionalization of the disabled.

Is there no way to get those in charge to see the light??? The state is not providing adequate care. They can deliver a DNR order for his signature, but they can't figure out how to deliver necessary services in his own home. In July they will be initiating this state's first waiver for his age group, but he still won't qualify, because they refuse to approve him for Medicaid. I guess they consider this Catch-22 to be our payback for fighting to correct a fatal error that has been perpetuated by every agency that has had anything to do with this case.

If justice is still in the hands of the people, I'm ready to get my hands dirty. I have been his caregiver for the whole 10 years at my own expense, because he's never qualified for the services he needed. We are drowning in paperwork & excuses. Before we go down for the last time, any suggestions?

Lorraine M. Loudenslager
email: up.proj@juno.com


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