Friday, March 13, 2009


The loneliness and isolation of people with intellectual disabilities outrages me. I believe that much of this is caused by the application of philosophical principles developed by non-disabled people for the betterment of the lives of disabled people. While I totally get the concepts of integration and inclusion, I also totally get the idea of 'sameness' and 'strength in numbers.' Those who's beliefs of 'total integration and no segregation' have led to people being disallowed opportuntities to be with others with disabilities have inflicted prejudice into social choice. Telling people with disabilities that people with disabilities are unworthy friends is a dangerous, dangerous thing. Let's add self hatred and self loathing to social isolation and call it a life.

(shut up Dave you've beat this drum to death)

OK, so remember yesterday I wrote about that young guy, all alone. About my breaking heart. Well, I thought about him the whole way down to Saint Chatharines. I had been booked to keynote a self advocate conference and was looking forward to just being there, being in a room of people with disabilities, being around that kind of energy and fun.

I rolled into the room a little early. I headline these gigs but Joe and I teach people with disabilites as a team. There is much to prepare. They came in, slowly at first but as the start time approached the room filled quickly with those arriving. There was such a buzz in the room as people saw friends and gathered to chat, as acquaintences were reunited, as relationships were struck up.

While talking with one of the facilitators, I noticed a woman with Down Syndrome using her cell phone to take a photo of a woman in a wheelchair. As she snapped that picture, I snapped a picture in my head. It's an image that I'm coming back to over and over again. It's an image that I'll use as an antidote for the bitter pill of isolation. There is hope. There is a way.

There were 50 people with disabilities in that room. There were 50 people with a social network. Sure they all live in that vast world outside. Sure they all live lives integrated and included, none of them want to give that up. But they all have these moments, moments when they get together to learn, to laugh, to visit. Moments were they can refuel.

At Vita there is a gay person who is not out to family or other staff. Someone who is terrified of being 'found out' ... someone who thinks that I am the bravest person alive for being out in human services. OK, I guess. Every now and then this person will pop into my office (as many people do) close the door and say, 'I just need to breath gay air for just a minute.' Then they will slip out again. The first time this was done I laughed. But I get it. In all sorts of ways.

At the conference in Saint Catherines only one of the self advocates was in a wheelchair. All the rest were your regular walkie talkies. I noticed her when she came in, she noticed me right away. When it was all over she came over to talk. I told her that it was nice to have someone else in the room in a wheelchair. She said, 'I noticed you too, right away, it's like a breath of fresh air.'

It is. It really is.

There is no freedom if there is no breeze.


Anonymous said...

breathing gay air. I'm straight, but I so understand that.

Anonymous said...

I don't know if this will make any sense but here goes.

I am Canadian, born and bred here. My husband was born in Hungary. If we ever decided to relocate to Hungary, I would have to integrate into Hungarian society and learn the language and shop in the stores, but that sure wouldn't stop me from searching out other Canadians and nobody would fault me. If I couldn't find other Canadians, I would probably look for Americans or Brits - we are not quite the same but we do have some commonalities - again, nobody would fault me or try to shame me into only spending time with Hungarians because, after all, I am in Hungary.

I think the same thing should go for the disability community. It is great to spend time with the non-disabled community but why not spend time with people who understand who and where you are in your life and even if their experience is not quite the same, you do share some common points and experiences.

My 2 cents!

Ashley's Mom said...

Dave, this whole concept of lonliness and isolation has really hit me hard. Your post yesterday, and especially Manuela's comment, haev had my mind spinning every since reading them. In fact, I blogged about it today and referenced your post.

My daughter (14 years old) is deafblind which already is extremely isolating. But then to have that isolation made even greater by well meaning support staff, myself included, has hit me like a ton of bricks.

Thank you for opening my eyes and my mind to this different perspective.

Ettina said...

You just described the biggest problem I see with inclusion.
When you are a minority group, often subject to misunderstanding and discrimination, you *need* contacts with people like you. Even an asocial autistic like me needs that.

Kate said...

Well said, Ettina. From another (not so antisocial but still autistic) Aspie who totally gets the message in this post.

Kate said...

Sorry, I meant asocial, not antisocial. Big difference, I know!!

Eileen said...

My head is till in a spin. My 11 year old is in mainsteam school, attends mainsteam activities. We've rejected 'disability' stuff because we believe everything should be open to all.

Despite recent media coverage to the contrary, there are few children born with DS now and - since we are in a rural community -there are none (that we know of) in our town and of the same age.

What the hell do we do? Do we have to contrive contact and social situations in the same way we do with typical kids? I really can't get my head round this one...

Dave Hingsburger said...

Eileen, go to a conference sponsered by a local or national Down Syndrome society ... or the international conference in Dublin in August (I'm speaking there) and take your 11 year old. You will never regret going.

Anonymous said...

A topic that pushes my "soapbox" button!

(I'm going with the quick thought, as I could/do ramble on about this for days.)

I tend to think that absolutes create problems in any number of settings.

It seems to me that regardless of the definitions we place upon ourselves/or have placed upon us by others......we all have a tendency to want to spend time with people we somehow see as "like" ourselves in one/more aspect. We develop little communities for ourselves within the greater communities based upon our own definitions.

It seems to me that people with a "developmental disability" label are no different.
Sometimes the defining element is family relationship, or gender, or religion, or sexuality, or musical taste, or preferred activity, or 12-step program, or charitable cause, or.....well I know you get it.

The point is that all people, as individuals, should have CHOICE about definitions, about preferred groups, about forming community.
Everyone should have as broad or narrow a definition of community as they desire at any given moment.

Forcing an absolute one way or the other narrows the potential for experience for everyone in the community.

E : )

Anonymous said...

I was just thinking about this feeling today - I recently connected with a bunch of Jewish folks my age out here and it was like that moment in high school when you find the drama club or the math team or the other geeks around whom you feel comfortable and are (finally, luckily) like "wow, i belong somewhere."