Friday, August 03, 2012

Rollercoaster to Community

When I was growing up I had a sense, very early on, that I was different from other boys. I didn't have a word for it then, I just knew that I wasn't like them. Feeling set apart from peers, I think, is a fairly common experience. The separation that I found most painful, was from my family. Not a separation imposed by them in any overt way - but the separation that was caused by knowing that I was different and knowing, without question, that I could not voice that difference. Being gay means, for many, growing up "different" from one's own family. Separate. Set apart. Solitary.

There are those, within the disability community, that suggest that the gay community and the disabled community are twin communities. That both are born into families who would wish them different if they could. Please don't hit me with howls of outrage at this suggestion ... I said this once at a conference and a mother of a gay son attacked me with violence. She said she loved her boy and wouldn't wish him different. I asked her how she felt when she first found out - she said that that didnt' matter, what she felt now mattered. I respectfully disagreed. I know that most parents love their kids with disabilities and their gay kids but I also know that there's a bit more of a journey involved. The statement of 'wishing different' isn't a condemnation of parents, even though it might sound such.

When I first read, and I wish I could remember which academician with a disability wrote about the 'twin communities' so I could give her credit here, I was deeply moved as it spoke to my experience of experiencing an isolation that dare not speak it's name. I think this is why when Joe and I first moved to Toronto we lived in the heart of the gay community, we went only to gay bars, read only gay novels, interacted socially primarily with gay people. I remember the first time I took Joe to a work event, having decided that 'out' was better than 'in' .. and he said about meeting my straight co-workers, "What do you talk to them about?" He was only partially joking, at that point in our lives we were marinating in gay culture, trying to soften up after years and years and years and years of isolation.

I feel much the same about the disability community. I find that the 'loss of aloneness' experienced within that community is a powerful draw. It's nice to simply have one's feelings validated or to share and learn solutions to issues and concerns. I like the humour within the disability community - I like the sense of camaraderie that comes from being 'out' and disabled. So, while browsing around the disability blogosphere I found a blog post recently that I powerfully related to ... I left a comment there and then decided, this morning, that I think many of you might like the post as well. So, I'm linking here to Rollercoaster Parenting, imagining that a public blog wouldn't mind me doing so. (I did manage to get permission.) Her description of shopping on a Saturday Morning with her daughter, who is a wheelchair user, had me saying 'YES' out loud to what she described. Joe, himself, hates those Saturdays where we need to shop for many of the reasons she lays out in her blog.

I read it.

I felt less alone.

That's why we have community. That's why we have blogs. That's why I think it's important that children with disabilities no be denied community by parents or professionals who believe that integration and inclusion means never, ever, ever, having time with other kids with disabilities. That's why I think it's vital that we look at building a home community from which we can challenge the broader community. The loss of aloneness - that's a powerful experience. I wished for it as a child. I have it as an adult.


Anonymous said...

Okay - okay - I know folks are going to jump on me - but really...reading the woman's blog just made me echo her title...what was she thinking??? It is almost impossible to shop with kids, whether they have a disability or not! Isn't this the definition of insanity? Doing something over and over and expecting a different outcome.? This expedition was doomed before she left the house. I can find little sympathy - well the same amount as for any mother for children in a grocery store. Surely other avenues can be planned. Sorry. I hate shopping with my disabilities - I sympathize with you and Joe - but I try to use my brain - my functioning organ - before I go out into the cruel world. Did the woman expect others to jump into line becasue she chose to go shopping with her kids on a Saturday morning? What WAS she thinking... just a minute, maybe she wasn't.

Belinda said...

Wow, thank you for this. I can't wait for this evening, when I'll have time to check out the post you linked to.

I just read the preceding comment and now I really look forward to reading the other blog.Forget tonight--I'm reading it now! :)

Karen said...

I don't agree with Anonymous at all. Disabled people are supposed to give up whole days of the week because of rudeness and inconsideration. Sorry. Not me. I believe that the moment that wheelchair was touched and moved, without consent, a criminal act happened. I don't believe a parent of a typical child would expect on a busy Saturday for their child to be picked up and moved by anyone. People with disabilities have a right to be anywhere, anytime and a right to respect all the time. Just like everyone else.

Heike Fabig said...

Ha, ha, ha, anonymous. You're funny!

The "what was i thinkin" is a literary construct called "irony"

Of course I know shopping with kids on a Saturday is mad! My daughter is my 3rd child, I have some experience with parenting. I much prefer to go on my own on those rare occasions when I have to go on a Saturday. But when she absolutely has to come with me to choose some yummies - well, I bloody well think she has the right to do so!

Andrea S. said...

No one should ever just grab a person's wheelchair and move them as if they were just a cart of groceries. You just don't do that to any human being, whether an adult or a child. Period. That's beyond rude. That's a form of dehumanization. It's a way to treat a PERSON as if they were an OBJECT with no agency of their own. Not acceptable. If they really are "in the way" then ASK them to please move out of the way. Let THEM work out how to move themselves out of your path. Even a child will have more expertise than you do with maneuvering their wheelchair because they use it every day and you don't. Besides, it's just more polite and respectful.

No one should ever just pluck a child who is doing their own thing and push, roll, or carry them out of the way and away from their own parent or guardian. Whether they're walking or in a wheelchair on crutches or whatever. That's borderline kidnapping. What you do is say, "excuse me" to the child as you would to an adult (because they deserve politeness too) or, if they seem too young, then you say to the parent, "excuse me, I need to get by please." Because, yeah, parents do deserve politeness too. Let them work it out.

The older woman whose way was being made for gets a pass from me because I don't know to what extent she was a part of the decision to shove the child out of the way. But the woman who did the moving? Gets no sympathy from me. My sympathies are with the girl and with the mother for this one. No amount of "planning ahead" can prevent another person from being borderline abusive and a jerk if that's what they have chosen to be.

Utter Randomness said...

No one should ever have to plan their life around avoiding ignorant, illegal behaviour from strangers. The woman who moved the child's wheelchair was completely out of line. What kind of person thinks that kind of behaviour is appropriate? People with disabilities are people, not furniture to be rearranged as others please. The mother didn't expect people to fall into line, she expected some form of common courtesy and common sense.

Belinda said...

I finally read the post on Roller Coaster Parenting and now I'm depressed at the rudeness of people. I say amen to Karen's response.

Anonymous said...

I knew I'd get some flack - and that is fine. Let me be clear, by saying the mother should not go shopping on Sat morning with her kiddies doesn't in any way excuse the very rude behaviour of other people. I'm not saying not to go out - but perhaps if one child wants her yummy then go shopping with that one child. If I counted right there would be one wheelchair, one shopping cart, an adult, and 3 children, two with special needs. That is a handful and major blockage, especially while someone is contemplating their precious yummy. NO ONE should touch another person's child - I would have had kittens. But missing is the time people waited to get by. They also have a right to shop on a Saturday morning. I stand by my first blog - yet enjoy the feedback. Dave sure gets us thinking!

Maggie said...

Full disclosure: I have not yet read the linked post.

What I'm present to, at the moment, is two pieces of my own (mostly TAB) experience.

1. I have been that person, the one who thought it would be 'helpful' to just grab hold of the wheelchair.

In my case (I see my defensiveness here) the chair was an airport chair and the airport staffer who was supposed to be pushing it had just let go, in order to redirect the second wheelchair she was pushing (yes, two at once), and they were halfway down a long, wide ramp.

Not that it was any of my business. Not that I even thought to ask the person in the chair whether she wanted my help. Not that I even apologized afterward.

So yes, I have been that person. This blog has helped me see that, and see the many moments when I can show up as someone else entirely.

2. I used to be a single parent. Anybody who thinks parents go shopping, with all their kids in tow, on a Saturday, for fun ... is in another country from the one I was living in. We shopped on Saturday because I worked all the weekdays, and had an hour commute, and it was all I could do in the evenings to manage dinner and baths and bedtime stories.

One of the things I am loving best about retirement is the right to go shopping at 10 am on Tuesday when almost nobody else is in the store.

Dave, thanks so much for starting these conversations, and for making us readers think deeply about events that may not be in our TAB experience, or may happen too often in our PWD experience.

Utter Randomness said...

Anonymous, I believe, upon reading the blog post in question a second time, that the mother in question did only take the child who wanted a treat with her, she did not take all three children.

Ettina said...

I'd say there's another commonality. In my case, I'm one of the few people I know with a disability whose parents never showed much sign of mourning the child they could have had - in fact, my Mom has said she's glad I'm autistic, because part of the effects of my autism has been to make me skip over the typical teen turmoil. But one thing that I experience, which I think is true of gays and also interracially adopted kids, is having parents who don't quite understand what it means to be part of my minority group. They don't know how to help me deal with ableism, the way black parents know how to help their child handle racism, or Deaf parents know how to help their Deaf children. They didn't go through the same stuff when they were my age - they weren't given bossy teacher aides, they don't get constantly called rude for breaking rules they don't understand, they don't juggle whether to tell about the diagnosis and risk stigmatization or not tell and risk being misunderstood, they didn't have to negotiate the maze of disability-related beaurocracies, etc, etc. They care, they love me, they help as best they can, but a lot of this I have to figure out on my own.