Sunday, November 11, 2007

DISABILITY 101: SOME GUIDELINES



Terri Stellar once said: "Don't assume I am defined by my disability. Don't assume I'm NOT defined by my disability."

Honestly, if it were up to me, I'd refer to myself as handicapped rather than disabled. Dis-abled seems like such a complete wipe-out of a term; the truth is, I'm very able. Just not in every area. (Who is?) Whereas handicapped makes me think of golf or horse-racing, where there is some acknowledged inequity that should be compensated for in a straightforward way -- not a lot of perjorative for me there.

But handicapped seems to be unpopular among folks with disabilities, at least in my corner of the forest, so I go with the flow. Hanging out with crips, I learned to use crip and gimp -- although the latter is more humorous, and both tend to refer to folks with mobility issues, not other kinds of physical difference. The thing is, no two people with disabilities have exactly the same attitudes, theories and terminology about their identity. So it's better just to ask how they refer to themselves. But, there are some bogs you can avoid trying to cross:



Usually, we're "people with X" (insert disability for X) rather than "the" anything -- epileptic, palsied, mentally ill, etc. We're people first, then may choose to identify a condition we have but it's not the sum of who we are.

Certain terms are NEVER used, and forgive me if you already know this: Retarded, spastic, Mongoloid, deaf-mute, crazy, idiot, or sightless.

We are not "afflicted", "suffering" from something, or "confined" to a mobility device.

Just as when you are identifying someone by gender or race: Is their disability pertinent? Do we really need to know that Dorothea Lange walked with a limp when we are discussing her photography? Avoid categorizing folks with disability just because it's what comes up in your mind when you think of them, unless what you are referring to is their disability.

(Women's Wheelchair Basketball, Japan vs. France, semi-final, Erika Yoshida of Japan shoots)

Blind means they cannot see a damned thing. Visual impairment is more accurate, unless they prefer blind.

Deaf, ditto with regard to hearing. Except: There is a capital-D Deaf which refers to the community and the culture.

Medical conditions or illnesses are not necessarily disabling. In general, disabled folks are attempting to unclench the grip on our lives by the medical establishment. We have bodies, not diagnoses.

We may refer to ourselves and each other privately as crips and gimps, but take great issue to being called that by outsiders. (Especially "cripples".) It's like "queer" -- gotta know your audience and how to convey it with respect.

We don't have "special" needs, just plain old human needs. And the funny thing about accommodations is that they help a much greater segment of the population than just disabled folks.

We are not any more inspirational or brave than anyone else. If your eyes well up with tears about how hard it must be for us, please, take it to your therapist.

"Physically challenged" and "differently abled" are, usually, seen as trying too hard. I do, however, personally make a distinction between disability and physically different. Disability implies a possible need for accommodation (i.e., alternative to stairs), whereas physically different means someone who is identified as not looking "normal" in public and is targeted for that kind of scrutiny/discomfort/oppression but does not actually have any limitations which might require practical assistance.

There is a middle ground between staring at somebody and refusing to look at them at all. If you're uncomfortable with how they look, that's YOUR problem. Get over it enough to do the human thing, right that instant, and take the rest of your feelings elsewhere for later.

If you suspect someone needs assistance in some way (and please, please, base this on their actual behavior and body language, not just the fact that they are disabled in some visible way), then simply ask "Would you like some help?" just like you would with anyone else. If they say "No", let it go, for g*d's sake. If they say "Yes", ask what kind of help they'd prefer. Use your common sense. Do not call the police or paramedics unless you've been asked to do so. (This is not a joke -- people in power chairs with certain kinds of movement disability often have to deal with strangers freaking out that they are in public on their own and calling 911).

If you want to address barriers to people with disabilities, you must consider two main categories: Architectural and attitudinal.

(Accommodations make life better for everyone.)

Accommodation should include the choice of complete independence for the person with a disability. It should also take in account whether the accommodation is "fair" as opposed to rendering the situation absolutely identical for everyone concerned (which is often not possible).

Disabilities are invisible as well as visible, and the point is, you cannot tell by looking whether someone has one or both. Stay kind, flexible and communicative. Admit what you don't know (self-abasement is not attractive, by the way) and listen to the information you are given.

One-fifth of all Americans has at least one self-identified disability.

Those of us with a disability may feel shame about it, because of attitudinal barriers. This does not mean we believe we should feel shame, and rest assured, we're working on it. Reassurance or confronting our denial is not your job. You work on your end of the equation, 'kay?

Two major no-nos:
(1) Don't offer advice. No matter what. We LIVE with our bodies, we have thought of EVERYTHING that might pop into your head. It's not a sign of caring, it's a sign of your discomfort or panic at having to deal with what is ordinary reality to us.
(2) We're not here to satisfy your curiosity about "what happened" to us. If you're a good friend or family member who might possibly have the right to ask a personal question of someone with a disability, use the rule of thumb you'd apply when asking them who their baby's real father is or how much money they make each month. (Yeah, it's that personal.) Otherwise, turn your attention elsewhere. And if you ARE invited to ask questions, last on your list should be "What's wrong with you?" NOTHING is "wrong" wth us.



Five years ago, I wrote an open letter to my town's arts and activities communities requesting that they take steps to insure that every event they planned become completely accessible to all of our members with physical disabilities or differences. At least one group -- ALLGO, the Austin Latino/a Lesbian/Gay Organization -- took my suggestions to heart and implemented them in a stellar fashion. Feel free to share these on in your own communities. What I said:

"I am asking each of you to take on this task as best you can, and empowering you to act on the behalf of all the people you are NOT seeing among the audiences at performances, meetings, rallies, etc. The reason why we are not a visible part of this community has to do with access, not interest, and please don't assume otherwise until you have taken all steps necessary to insure access. Creating full access will also bring in people with invisible disabilities, temporary disabilities, and our friends and allies. It will enrich gatherings in a way you may not imagine possible. And it is entirely consistent with Austin's character for this to be so.

Below are a list of guidelines on how to make spaces and events MINIMALLY accessible, as well as more detailed accessibility for when you have accomplished the ABCs. Most of these changes do not involve cost, just foresight and communication. Including an "access" person in all your planning is a good idea. Allotting money in your budget for access will also be a necessity in the future.

From this point on, I ask that all publicity for events include an indicator of how accessible they will be (and this means more than just a wheelchair symbol). Please start noticing if accessibility is being included with publicity. If it is, please contact the planners or tell them once you are there that this notification made a difference to you, and please give your support to venues that have begun the work of ensuring access. If accessibility is not indicated in publicity, please contact the planners to request they do it differently in the future. If planners, organizations and spaces show no interest in creating greater access, please let others know (i.e., via this list) so we can be aware of this attitude. If you persist in holding events in inaccessible venues, please don't bill them as "community" gatherings, but instead admit they are private parties for you and your selected population.

MINIMAL ACCESSIBILITY:

1. Clear indication on ALL flyers, press releases, e-mails, etc. of level of accessibility -- no disabled person has to call in order to find out if they can get in.
2. No stairs or steps without wide, gradual ramp and/or elevator.
3. Elevator has self-control (i.e., is on all the time) and the buttons are reachable to someone in a chair.
4. Clear aisles and entryways.
5. Places for wheelchairs to occupy are scattered throughout the audience, not just clustered in one spot. (i.e., no "keeping the crips together")
6. Wheelchair accessible bathrooms.
7. Chairs or benches beside every point at which someone might have to stand in line, so people with mobility or endurance impairments can sit down if necessary.
8. A large number of wide-seated stable chairs with no arms available in the seating area, movable if necessary.
9. Information on the flyer and publicity includes which busline stops nearest and whether or not this is a special transit line.
10. The venue has clearly-identified disabled parking right outside the door. If this is not available, indicate in the publicity where parking IS located.
11. No smoking inside the venue.
12. A REAL sliding scale for those on limited incomes -- real sliding scales are available up to the moment of performance, do not require the attendee to make private or prior arrangements to obtain a ticket, and begin as close to zero as possible.

BASIC ACCESSIBILITY

All of the above plus:

1. Signing and/or captioning.
2. Description for blind or visually impaired attendees.
3. Strongly requesting the audience to wear no perfumes or scented products of any kind.
4. Prior cleaning of performance space and bathrooms with non-toxic, nonscented cleaning products.
5. Assisted listening devices for audience members with both visual and hearing impairments.
6. No strobe or flashing lights. If this kind of light is ESSENTIAL to the performance, then a disclaimer included in the publicity so epileptics and others can decide whether to risk attending.
7. Childcare which includes all of the above measures.

6 comments:

darlene said...

wow...what a great article...and i love your term differently abled...that is the best...i am also differently abled and i am not handicapped nor dis-abled...i am inconvenienced in some things. How great we can have such great attitudes and love....

darlene
www.spiritedboutique.com

Maggie Jochild said...

Thanks, Darlene. Looked at your site and love the walker bags!

Maggie Jochild said...

To read a great personal essay about the choice to transition to a scooter, check out What, me? Handicapped?.

Liz said...

Hi, great post. Just one thing: deaf people have a lot of different levels of deafness - some can hear with hearing aids, for some they don't help, some can hear a little without aids, and some not at all.

I tend to wear aids, but do define myself as deaf - I know quite a bit of BSL without it being my first language, I rely on lipreading/notetaking (in lectures/seminars) etc. I think what I mean is that we can't assume certain things about people just because they are labelled as being 'deaf' - as there is a wealth of difference in one particular category :) I'm pretty sure you know this already though, sorry! :)

I agree with 'dis-abled' as it assumes people CAN'T do something. If that is the case, like you said, everyone would be disabled as not everyone can do everything! :) differently abled and being inconvenienced in certain things would be more accurate, yes. Also, I find that it can be ignorance or environment that puts people at a disadvantage.

Maggie Jochild said...

GREAT to hear from you, Liz (so to speak -- grin), and your insight is a welcome addition.

Is BSL British Sign Language?

Liz said...

Hey, sorry it's taken so long! Yes, BSL is British Sign Language (me being a Brit and all..) :)