Sunday, June 26, 2011

Community, I Choose Mine

So often when travelling to lecture I get into heated debates and discussions about the issue of community. I see the community differently than many others in 'the movement' .. but aside from that ... the issue is the question as to the existence of the disability community or the appropriateness of  even the concept  of a community comprised of those with disabilities. Now, it's important to remember it's almost invariably non-disabled people explaining to me, a disabled person, how 'community' means everything but associations with others of 'like kind.'

Now I get the concepts of forced segregation and forced congregation. I do. It was wrong. They seem to not be able to understand the concepts of forced integration and forced inclusion. To me, the argument should never involve even the mention of 'segregation' or 'integration' it should always and only be about 'force'. Telling a person with a disability that hanging around with others with disabilities is wrong and that the person should aspire to typical relationships is, to me, tantamount to psychological abuse. It's teaching that 'the norm' trumps 'the different' and that someone gets value from the gang with which they hang, rather than from membership in the human community. It even suggests, slightly, that some people are just more 'human' than others. Yikes.

Me? I value the disability community in the same way as I value the gay community in the same way I value the community of faith. They are all communities to which I have entry. I do not wish to confine myself to one large, huge community. In fact, the concept of community as spoken about in the community living movement terrifies me. I think it was conceived and the lionized by middle class white thin privileged people. That community, I flee from. I see it as violent toward, as biased against, as bigoted of, and as greeting difference with intolerance. Yep, you may want to go to those parties. I don't. I'll stick to my little communities. The ones to which I belong and where welcome greets me at the door.

A few days ago I was rolling into a store and a woman in a power wheelchair stopped at the sight of me. She said to her friend, excitedly, 'Look, another one.' She came on over and we chatted. She was a bright, funny, elderly woman who said that she was always the only wheelchair user in the store. My appearance was almost magical to her. She said that sometimes she just craves the sight of others with disabilities, to remember that she's not alone in a world of others. The fellow with her obviously disapproved of her comments, non-disabled people sometimes don't get that sometimes they just aren't enough.

Later that same day I was rolling back to the hotel and a young and pretty woman was wheeling towards me. The sidewalk was narrow and the drop off steep. I smiled and called out, 'Wanna play chicken?' She smiled back and answered, 'I'd have the softer landing!' We howled. We stopped and talked ... about gloves. She uses a different style than I do and we talked about them. We laughed about how we get asked all the times why we wear gloves. She said, 'I used to say, 'Well you wear shoes don't you?'' But she stopped that because the confusion often caused minds to misfire dangerously. So a few more comments about us-world as compared to them-world and we were off.


Automatic kinship.

Community. I love the disabled community. I love those who have 'come out' as disabled, identify with a disability world view, and who see allies where others see difference. I love those accidental meetings. Meetings that reassure me that because my experiences are not unique, I am not alone.

That's what community is for.

Perhaps the strong drive to forbid people with intellectual disabilities the right to respectfully choose to hang with each other is our way of keeping them alone. Keeping them from talking. Because maybe we fear if they did, they'd discover something. Community. And the power that comes from common goals. Perhaps what we are really afraid of is, revolution.


Anonymous said...

Thank you for this post, Dave. While I believe they deserve access everywhere, I like that my two children with disabilities are able to immerse themselves into communities of their peers. While I make sure they are "out there" as much as they need to be, I try to recognize when my attempts at inclusion might be more about me than them.

CT said...

"To me, the argument should never involve even the mention of 'segregation' or 'integration' it should always and only be about 'force'."

This. Oh, this, Dave, this.

And "this" to the "Yikes," too.

Colleen said...

Dear Dave:

As a parent of a child with a disability I get this. It is so affirming to be with other parents of kids with disabilities - you don't have to explain - they already know so much that parents who don't have a child with a disability can't understand - like the joy your child brings and the prejudice you encounter. You never hear someone saying, "You better not hang out with those other people who have kids with disabilities - its bad for your image." Me, I will take community where I find it!

Great post

Belinda said...

This helps me understand better than anything else you've said about "sticking together" to this point. It makes sense to me--just like I love to hang around with other writers. They are my "tribe."

I think too, that "exclusion" anywhere is to be fought furiously. The right to be part of the wonderful, colourful, diverse quilt of humanity is to be guarded and cherished.

Brooke, Phoenix, Cessna, Aspen, Canyon & Rogue said...

Hi Dave, I've been reading your blog for a couple of years now and love it!

I was reading this entry and nodding my head in approval the whole way through. I actually wrote an entry on my own blog a couple of months ago that sorta brings up this point as well. I'm sure you're busy, but here's the link in case you wanted to read what I wrote

Andrea S. said...

On one occasion I was at a family gathering and discovered that another relative of mine--someone who was recently related by marriage--happened to be vegan like me. We were both excited to discover this about each other because it can be a isolating sometimes to be the only person in a group who shares a particular set of dietary restrictions. So it was a relief to finally not be quite so alone for a change. Naturally we spoke a lot about issues related to what it was like being a vegan in a meat-centric society.

After wards, I was talking with another relative who accused me and my companion of deliberately trying to “convert” the other people at the table to veganism. I was both bewildered and hurt by this. Bewildered, because it honestly hadn't occurred to me to wonder what other people at the gathering would think of our conversation--I was just too excited to have found someone who shared this characteristic in common with me. So for me, this accusation came way out of left field. Hurt, because I was disappointed to realize that this relative clearly did not grasp how isolating it can be sometimes to be the only person in your group who eats in a certain way. I respect that most of the people I know don't want to choose veganism for themselves. And, I'm not looking for sympathy. But I wish that more people would simply respect that, yes, this is the way I am, and even though I chose this for myself (unlike most of the other characteristics about me that make me "different" such as being Deaf or bisexual) that choice doesn't cancel out the isolation that can come with difference--and that sense of isolation, and the natural excitement at making a connection with someone else like you, really doesn't have anything to do with people who don't share that difference.
This is not exactly what you wrote about, but your post made me think of it.

I agree absolutely that it shouldn't be about only associating with so called "normal" people. It should be the right to CHOOSE and the right to be free of FORCE. The goal isn't normalacy--the goal is to stop assuming that "normal" somehow means "better" or superior or that only "normal" people are worth associating with.

Another story that comes to mind: when I was looking for a college to attend, way back in my teens, I discovered one college with a deaf mainstreaming program that had a formal policy that deaf students could only be placed in a dorm room with a hearing roommate. The point supposedly was to encourage deaf students to integrate more and not put themselves in a deaf “ghetto”. There was no consideration of the idea that deaf people might want a deaf roommate in part because it would be easier to communicate, or because we had ALREADY grown up isolated from the Deaf community and desperately NEEDED to make a connection with it just to reassure ourselves we weren’t alone in the world. It was just assumed that the hearing adults making this policy knew what was "best" for young deaf adults.

Forced integration carried too far can have a way of becoming forced isolation. I didn't choose the college with the stupid roommate policy, but I still ended up with two hearing roommates anyway. Looking back, I think some of why I was so unhappy at my first pick college is simply because I felt so overwhelmingly alone as the only deaf student in a sea of hearing students. This is why I ended up transferring to Gallaudet University as an undergrad. Since Gallaudet, I have gone on to work in predominantly hearing environments and am happy interacting with hearing people--but I would never want to do it full time and resent any implication that I should have to make an "either / or" "all or nothing" choice. I WANT and NEED to have BOTH.

Susan said...

I ran into a mom the other day whose son was diagnosed with Aspergers just a few days previously at the age of 21. Her running into me, was a God-send to her. She was welcomed into the community of "ASD parents" and suddenly the sense of mystery and aloneness she has felt is dissipating exponentially. She has always loved her son, but now she knows that she has companions along the way who have shared the same journey and who can tell her she's "normal" and can help her to unravel the "mystery" of some of her past (and present) experiences. In any other community, she (and her son) would still be "different" on some levels. In this community, she's simply "one of us". She - and her son - is understood, accepted, and fully appreciated. Most importantly (for her personally) her parenting of him is fully affirmed. She's never been able to get that anywhere else...

Anonymous said...

Well said, well delivered and well written as usual. A Big OHHH Yeah and many nods to this...

Kristin said...

"She said that sometimes she just craves the sight of others with disabilities, to remember that she's not alone in a world of others. The fellow with her obviously disapproved of her comments, non-disabled people sometimes don't get that sometimes they just aren't enough."

This reminds me of the connection I've made with the adoption, loss, and infertility community. Sometimes it is so very important to have someone who understands.

Anonymous said...

yes, oh yes oh if only I could say so easily what you have written. In the push for mainstreaming children in the UK what has been forgotten is the equal necessity for community. Children with high personal care needs with one to one care support but completely isolated from any peer group. Forced into a concept without thinking through the whole issue.

Kristine said...

YES. You so beautifully and relatably describe my feelings about both community and identity. Don't tell me that my disability is all of who I am, but don't tell me that it's not an integral part of who I am. Don't tell me that the "only place where I fit in" is with other people with disabilities, but don't try to separate me from them either.

My friend works in a self-contained special ed class, for elementary kids with intellectual and communication disorders. It seems like it's becoming more and more common for parents to insist that their child be placed in a mainstream class, regardless of how inappropriate the placement is academically/behaviorally/socially, just so their child won't be associated with "those kids." Of course I agree with mainstreaming kids when it makes sense to do so, but fear of stigma and association is a VERY sad reason to make these decisions.

Within the community, we're not always so good about owning our membership either. When I was growing up, I dreaded and avoided being associated with others with disabilities. My disability did NOT define me, and I didn't want to give anybody reason to think it did. And when I meet others in wheelchairs, it's usually easy to tell whether they're seeking or pointedly avoiding my eye contact. It's rarely neutral. People either want to make the connection, or they want to run from it.

Spaz Girl said...

Dave, can I use this post for the June Disability Blog Carnival??? The theme is community and it's just too perfect.

Dave Hingsburger said...

Spaz Girl, of course you can, I'd be honoured!

Maggie said...

Thanks so much for this post. I watch my young friend Peter as he tries to fit in with so-called normals, and as he relaxes and fits in fine with his natural peers. Quite evidently he needs to be in both groups, but for different reasons.

I remember this conversation when it was about racial integration. The well-meaning-but-clueless white liberals (of which, too often, I have been one) thought once the black kids were admitted to the 'mainstream' high schools they would blend into the mostly-white student body.

In the classrooms, they did, but in their social time, not so much. The book,

Why Are All the Black Kids Sitting Together in the Cafeteria, by Beverly Daniel Tatum,

did a nice job of explicating the need for 'someone who understands' and 'someone whose experience matches mine' -- as well as the need to not have to work so hard to be 'acceptable' to people who don't have the same experiences of exclusion etc.

This book was specifically talking about racism, and was specifically pitched at the mostly-white teachers and administrators who were dealing with newly integrated high schools.

Is there a similar book out there about ableism? Maybe, one of yours?

Betty said...

Thanks Dave,
Sometimes it is easy to be cruel or wrong headed in an effort to help our residents belong.

I will remember that people don't need to be in "the greater community" unless they want to be.

Tamara said...

I'm not sure about the adult world, but some "inclusion" programs for kids with disabilities seem to me to be "manufactured". They aren't truly inclusive, but they pull non-disabled peers into helping roles, which, to me, changes their status as a peer.

I'm really confused about one of those programs right now, and your post is helping me work throught my thoughts. Thanks, Dave.

kiwiaussie said...

This post totally explains why I want my daughter with Down Syndrome to go to a special school. To me, mainstreaming (at least in her case) is more about making a statement, forcing people to treat her like 'normal'. But the truth is, that while children with DS tend to be readily accepted by their peers in the first couple of years of schooling, as they get older, the intellectual 'gap' between them and everyone else grows wider and wider. So while they may be accepted, while they may be loved, they are never one of the 'gang'.

I want my daughter to be able to grow up around those who love and accept her, but also around those who just want to hang out and be best buddies. And no matter how you look at it, her best buddies are going to be those who know what it is like to be her. Those who have similar interests. Just like the rest of us.

Especially for those with intellectual disabilities, forced inclusion is really forced exclusion. We all tend to be friends with those of a similar intellect as ourselves. Not in any sort of nasty condescending way, but simply because we have more in common. Even then, there is the 'segregation' of those we share interests, beliefs, etc with. I have my disability world friends, my Christian friends, my scrapbooking friends etc.

Being intellectually disabled isn't all that is required for friendship to develop. Other interests matter too. But, I figure that my daughter will have a lot more opportunities to meet close friends in an environment where there are many others with disabilities.

With forced integration, there may be only one other child (if that) who has been mainstreamed in their year. And that other child may have completely different interests, or just plain be a pain the bum. But they will be expected to be friends.

Last year I was at a DS get-together. A friend of mine came over (to Australia) from New Zealand, with her 21 year old daughter. Another (local) friend has a daughter who is only one month younger. Their mums were hoping they would be friends. But the truth is, they simply didn't get along. Having DS wasn't an automatic friendship maker! I want my daughter to know enough people with disabilities, and without disabilities to CHOOSE her friends.

Sorry, I got rambling a bit there. Hope it made sense....

Stephen said...

I agree wholeheartedly with this, the right to create and be part of a community that feels right for you is fundamental and anyone who somehow disapporves of ANYONE'S chosen relationships needs some serious talking to. I would however want to add a note of caution. I think a lot of the misguided disapproval of disabled people being together started with that very recognition of forced togetherness that historically was there, a classic case of baby removed with bathwater. And where paid staff have a role in supporting people to expand relationships I think it is still vital to question whether there is really choice. All too often, simply supporting someone to go to the nearest centre where lots of other disabled people go can be a lazy, only option "choice" for services that can't be bothered to support real meaningful relationships. Like most of us, our communcities will be full of people we identify with and share commonalities with but also needs the richness of others, though I very much take Dave's point about the reality of how many of those others react to those who are different. I don't think that's a very coherent ramble but I hope it makes sense!

CJ said...

I too love the disabled community although I am not disabled.

Dave, today I did a good thing. I'm trying not to cry while I write this. You see, I saw her joy today, her smile and she responded to my questions. "She" is almost 60 years old, intellectually disabled and most likely schizophrenic. I am her social worker, only for a few months. She came to me from a placement where the caregivers had retired. She has a long history. Foster homes, multiple state hospitals, the kinds of things that happened when she was young. No family left. I understand psychiatric medications and am not against their use. However, she was on multiple medications, on huge doses, prescribed by a NP. I was able to refer her to a psychiatrist who is reducing her today I saw her, the real her. She is in a wonderful community home. Her hair was dyed the color she wanted. Her nails were painted the color she wanted. She had her ears pierced with earrings she wanted. She smiled and told me how much she liked her home. Yes, sometimes she is all over the map and doesn't know real from not real but at least she is awake and happy while doing it. Her caregiver said she has not had any problems while the meds are being reduced. Yes, she will need psychiatric medications but not to the degree that she cannot function. Today was a good day! I really like her too.

Buck Hunter said...

David, I enjoyed you comments. I think we try sometimes so hard for individuals that we forget to give them a voice. A lot of years ago, my wife worked with a young person with Downs Syndrome, integrated in school. This young person on an outing, came face to face with another individual with Downs Syndrome. The young lady made a comment that that person was just like her. It never dawned on my wife that this young lady may have felt different from us 'normal looking people'. I like being like my baseball friends and hunter friends in small communities. I feel the same and safe.