Powerful Images of People with Disabilities...

...over at The Gimp Parade. (Kay is back blogging -yaay!) Missed her online presence greatly.

Anyhow she's posted a series of photos showing disabled people out and about - one on the deck of a cruise ship, e.g.

There is also a photo of two women fishing from power chairs- and this struck me the most.

When I was traveling for wheelchair tennis, I'd often find myself in a group of people in wheelchairs which I welcomed. It's quite a different experience to deal with lack of access in a group, for example, than alone. It's also interesting to see the dynamics that arise when people encounter numbers of disabled folks out and about.

I can understand that it might seem unusual to folks to see a group of eight to ten people in wheelchairs together, but sometimes people would seem surprised even when there would be just two or three of us together. And I found this fascinating - since able bodied people travel that way all the time!

We'd get comments like :

"Oh you two know each other?" (sadly adding to the myth that we all know each other )

"Why are you here?" (in hotel elevators)

"How did you meet?" (this one always fascinates me- and opens up lots of lines!)

It's like applying for a permit to have a social gathering.

Question One: How did you meet the co-applicant?

That kind of thing.

In any case, I think the level of intrusion in the comments is striking (although the level of intrusion in general is higher when you have a disability). And I think more images showing people with disabilities together just doing things (fishing, etc.) would help toward changing what apparently is the public's view that seeing more than one of us together warrants getting a permit - or something!

Click above to visit The Gimp Parade.

Getting to know you, getting to know all about you...

With the onset of my own impairment, I became almost morbidly sensitive to the social position and treatment of the disabled, and I began to notice nuances of behavior that would have gone over my head in times past. One of my earliest observations was that social relationships between the disabled and the able-bodied are tense, awkward, and problematic.
-Robert Murphy

One of my earliest ventures out in my wheelchair after my accident was to a local mall. After shopping a while I was waiting for my friend to come out of a store when a 50ish looking woman approached me. She began a conversation with me that seemed innocuous but quickly escalated to an inappropriate and intimate one - considering we had met seconds before.

After telling me she just had several surgeries, including a hysterectomy and another procedure I cannot recall, she flat out asked me if my bladder worked. I remember blinking at her and not responding. She smiled and repeated the question, adding "Surely you don't mind. I'm sure with your disability that you're used to talking about these things."

Not with total strangers, I remember thinking, as my friend walked up. I never did answer her question and, quite frankly, if it happened today, I have a repertoire of ways to respond because over the decade I've been visibly disabled that same kind of behavior has repeatedly happened .

I'd label it inappropriate and intrusive, but I suppose it might fall into the category of tense, awkward and problematic. Certainly some would say that when people ask intrusive questions, they "don't know what else to talk about" to which I respond "How about those Mets?"

The same social rules do apply in social interactions with people with disabilities. It's inappropriate to walk up to a total stranger and ask her questions about her bladder and it's the same when a person has a disability. Yet it's amazing how many people seem to think that getting to know a person with a disability is only about asking questions about the disability- which include intimate and intrusive questions sometimes. Rather than talk about topics of general conversation such as movies, books, sports, etc, some people make a beeline for the medical information.

I'm not saying, on the other hand, that it's not okay to ask at all what a person's disability is at some point. And sometimes when people hold back asking that question it's almost painful to watch them dampen down their curiosity. I have had a few conversations where folks were talking about other topics but kept trying to find out exactly why I was in a wheelchair - like one woman who kept bringing up TV movies about disabled people in wheelchairs and then asking me pointedly if I could relate to each character. I felt like screaming "It's a spinal cord injury!" after five minutes of that.

If there's one way to reduce the tension and awkwardness that people sometimes feel upon meeting a person with a disability, it's this - social encounters with people with disabilities need to acknowledge the person who has the disability. Just like you would with anyone. And getting to know that person takes time just as it does with everyone else.

Height differential phenomenon- HDP

Just read a great article over at BBC Ouch by Victoria Brignell describing what happens to a wheelchair user socializing at a party where folks are standing around talking. She calls it height differential phenomenon: the fact that people in wheelchairs are sitting at the same height as everyone else's - well - butts. She writes:

"Holding a conversation at such events poses a major challenge for the average wheelchair user. How do you chat with another guest when your head is a considerable distance beneath theirs? The answer is: with difficulty. They can't hear what I say and I can't hear what they say - not a great basis for communication. "

As the author concedes, this kind of difficulty is never going to merit consideration like issues such as accessibility; however, in its own way, it can really stifle social contact and keep one out of the conversation, particularly in a room where multiple conversations are ongoing and you cannot hear what is being said. Moreover, I can relate when she says she's learned to put a certain look on her face and nod as if she can hear sometimes.

Victoria also writes about the experience of getting around on transportation and going to shows in a wheelchair - and some of the humorous and not so humorous aspects of that. Definitely worth a read - as are some of the comments.

"It's not the disability, stupid"

An essay.

Via A Different Light

Emotional and social aspects of Epilepsy in Children and Teens

Epilepsy is the most common neurological disorder in kids. Take a few minutes to read the above article and learn about it - and expand the circle of support for these kids.

It's not the disability but the response that matters

"Disability isn't primarily about the physical, mental or intellectual impairments that are associated with it, but about society's response to them"
from Stuff Pity

Some people may not be aware that there is an area of studies offered in colleges called Disability Studies. There are an increasingly large number of blogs to read written by people in this field and I highly recommend Planet of the Blind and DisStudies at Temple U, which are in my blogroll.

I am an advocate. I've helped people with disabilities and their families for years who face discrimination and barriers that simply don't exist for others. From parents struggling with IEP programs for their children to blind people who are denied access to places because of their guide dog - on and on and on, I've pretty much seen it all over the years.

Yet I can only speak of my own experiences. This is, in my opinion, limited compared to someone who has been disabled all of their lives. Out of respect to my friends with disabilities, both the ones I now have and someday will have, I acknowledge this reality.

Yet I feel compelled to speak out in general here and state that in my experience after meeting and knowing many people with disabilities, it is not the disability that matters as much as the response to it. I do not inherently find my disability by itself a problem or an issue, but I do find the barriers that exist "out there" in society a problem. I find the attitudes "out there" to be a problem. And I find exclusion to be a problem.

I can assess my physical needs and get equipment I need to address those. But I can't change an employer's attitude about hiring a person with a disability. And, although the American with Disabilities Act has helped to a point, legislation is not the entire answer. It leaves gaps, not just because it may be written incorrectly, but because laws only go so far to change behavior.

And the laws only address certain situations. The rest of it often relies on peoples' attitudes, beliefs and experiences. Many people are open to hearing what those of us in the disability community have to say. Even though they haven't experienced living with a disability, they listen to us and read what we write . I know this because of the number of emails I receive from able bodied people each week.

And so, with communication, change happens. When we speak up, we not only let people know about our life experiences, but we demonstrate a basic trust and respect in and for others- that their response matters and , together, we can achieve inclusion.