Several years ago George Hislop, who was a close friend, told me the difference between someone who was 'gay' and someone who was 'homosexual.' He said that a 'homosexual' was someone who had sex with others of the same gender but who did not identify with their sexuality, denied it as often and as loudly as they could and who did nothing to support the political movement regarding the rights for sexual minorities. A gay person, on the other hand, was someone who also had sex with others of the same gender but had an affiliation to the movement to the rights of others to love as they will that went beyond sex. Gay people, he said, identified with their sexuality and with their community. He saw the difference as the same as the difference between shade and sun.
I tell you this because I wonder if something the same exists within the disability community. I was in a store the other day, pushing myself around, looking at and shopping on my own. Joe was picking up some beer in the beer aisle, I was shopping for little keepsakes for the girls. A fellow came by in his wheelchair, he was a trim and very fit guy who manoeuvred both a cart and his chair with incredible skill. I, on the other hand, manage to put stuff in the bag behind my chair. He saw me, grinned, said a quick 'hello' and was gone. It was a brief interchange, one that kind of felt like an acknowledgement of brotherhood, of membership, of instant understanding. Nothing more, but it was nice. Really nice actually.
You see, I find, often that others who are wheelchair users, or others who use mobility devices actively avoid any kind of social contact with me at all. In the same way as many non-disabled people make me feel invisible, others with disabilities do the same. It hurts a bit more with done by someone who understands the effects of invisibility. I mentioned this once to someone who told me, quite coldly, that just because another person has a disability doesn't mean that we are automatically friends. I was a bit insulted that anyone would think that I meant that ... friendships don't come with a glance ... only acknowledgement does. Another person suggested that those who ignore me probably don't want others to think that they hang around with others with disabilities, that they have real friends, that they aren't part of some great disability ghetto. First, REAL friends ... what kind of shit is that? Secondly, is their worry about what others would think and indicator that they have others to impress? Others who's judgements they fear? Others who have instilled the idea of shame into the simple acknowledgement of disability in a public place?
Perhaps, and I'm only thinking out loud here, that we might have a similar distinction to make, one along the lines that George suggested. Is there a difference between those who have a disability and who identify as a disabled person, who see the disability community as an important one, who see activism as part of the mandate of politically aware disabled people ... and those who have a disability but deny it (I'm just like everyone else) or loathe it (I'd love to be anyone else but me) or refuse identification (I don't like to label myself disabled.) One makes community, one denies community, one accepts belonging, one longs to belong elsewhere.
I know that this is an awful lot to bring forward out of a simple,chance, encounter in a grocery store. But it's more that that single experience. It comes from a multitude of experiences. Like the woman I spoke to in Maryland who wanted to talk to me about accessibility in Toronto. When this happened it reminded me of being in a gay bar in Milwaukee and being asked how safe it was to be gay in Toronto. In both cases, it was more than strangers asking strangers tourist advice ... both were experiences of the best of community. Where strangers aren't so strange, and where questions are understood at the deepest level of their asking. Community is community but community requires an entrance fee - identity.
So do you all see a difference between the 'disabled, out, and proud' folks and the 'I don't consider myself disabled and would never, ever, want to hang with others who have disabilities' folks.
I do.
I'd like your opinion on this one ...
In the general sense, I think you're absolutely right. There are "out and proud" disabled people and then there are people who find disability shameful, often including their own.
ReplyDeleteI remember attending a "support group" for people with my diagnosis. They were complaining about how terrible it was to be housebound for years. I told them about the local ShopMobility scheme, of which I was a member. They looked at me as if I'd suggested they do something unspeakable to the family cat. "It's not like I'm disabled."
On the other hand, I think there's a journey to be had. The first time I was pushed in a wheelchair I felt like a ginormous fraud, even though I knew - KNEW - that I was not capable of walking, had barely made it from the car to the reception area where the chairs were stored. It was like an amplified version of what I felt the first time I went out in public as an adult wearing a dress (I'm a trousers person) made all the worse by the fact it wasn't voluntary. Acceptance doesn't come overnight.
So I think in the specific sense, there's room to be patient with people who are still figuring out their disabled identity.
I also think that for me personally, when I feel good I do the Fellow Wheelchair User Nod, but when I feel rotten, I don't make eye contact with anybody because if I did I'd probably zap them with lasers from my eyeballs for their sin of being between me and my bed.
We are only 6 years in on our disability journey, and I already see this happen. I call these folks "Ds snobs", for lack of a better term. See, in my mind, inclusion doesn't mean EXclusion of other people with disabilities, but INcluding everyone in your circle of friends. Why do people (parents) go out of their way to only have their kids hang around with typical peers? Just doesn't make sense to me.
ReplyDeleteI think people are different. What works for one doesn't work for another. My mother lived with a disability from the age of six months. She coped with the challenges it brought her by having very little to do with other disabled people - not to the point of rudeness if life brought someone her way, just never seeking out others.
ReplyDeleteI didn't and don't think it's for me to judge her, and I know she felt strongly that life worked better for her this way. She simply didn't want to join the disability community, any more than she wanted to join other groups, clubs or committees.
A very good debate, Dave.
ReplyDeleteIn my experience, I have observed several different ways that inidiviuals and families identify with their disability.
Personally, as a parent of a child affected by Autism we identify with other individuals and families affected by the disorder (and those affected by other disabiltites as well). We do this by attending support meetings, family events and fundraisers within the Autism Community. We also invite others from outside the Autism community to particpate. (I guess inclusion works both ways) ;)
We also support our child in making and maintaining relationships with her typically developing peers. We take part in family events that are not Autism/Disability specific but we never try to hide or ignore that piece of who our daughter is.
In school, our child is mainstreamed in a regular classroom with an Aide. The expectation is that she particpate in class as much as she can with her peers and that when recess time comes around she interacts with all her peers regardless of ability. (What was happening was my daughter and another child affected by disability were always paired together and played alone in a corner of the playground while their Aides, sat on a bench nearby and chatted.)Once I discovered this I informed the school that this was not acceptable. Both children should be playing with all the other kids, not tucked away in a corner, out of sight out of mind.
Within the Autism Community, I see families living in denial of their child's dx and they chose to stay away, not wanting to participate because if they do... they are accepting their child's diagnoses.
Autism is a huge spectrum and many families can't identify with individuals who are affected greater by the disorder than their own child- so they chose to stay away. Their child ends up struggling with their identity and some, (who will say later, that they always knew they were different from their peers)will never have their diagnosis disclosed until they are adults and by then- they are so far detached from the Autism Community they can no longer relate to it.
So I guess, long story short. We identify with both communities, being different like everybody else ;)
Oh, absolutely.
ReplyDeleteLike Mary, I encounter a lot people (particularly frail elderly folks) who would be horrified to think that anyone might consider them disabled.
And as you said, when you encounter another disabled person, you don't have to fall into each other's arms as if you're long lost friends (and often, that would be a really bad idea). But a little acknowledgement goes a long way.
As an autistic kid, having to interact with *all* of my peers every recess would have been awful. More often than not, I didn't really want to interact with *any* of them. In any given group of people, most of them are going to be awful to an autistic person - and in any case, I needed some down time from interacting.
ReplyDeleteYes. There's definitely a difference.
ReplyDeleteI was out with a friend once, and we passed a guy in a wheelchair. He nodded a greeting, and I returned it. My friend asked me, "Does every person you meet in a wheelchair smile at you?" I didn't have to think about my answer, "No, probably half of them do. The other half go out of their way to avoid eye contact or any association with me." My friend, who's black, laughed and whispered to me, "Black people are the same way." (I think conversations and connections like that are one of the reasons we became good friends. :))
In college, I had a neighbor who'd been paralyzed as a teenager and used a wheelchair. He had friends, but he always looked angry to me, and seemed to avoid looking in my direction. He suddenly moved away in the middle of the semester, and then came back about a year later. The next time I saw him, he came right up to me, and started a friendly conversation. There was a new light in his eyes. I don't know what happened during his year away, but he seemed so much happier, more at peace and accepting of himself. Interesting how that manifests in treatment of others.
In a class about minorities in the USA, I raised the subject of disabilities, and the teacher (currently abled) said that some prefer the word "challenged". I answered that many, especially activists, dislike that kind of euphemism. Then she talked about her mother, who had had polio as a child and was active in the ADA movement, yet prefers the word challenged because "she does not consider herself disabled". So the categories you describe are an interesting approach, but of course, people are more complicated.
ReplyDeleteWorking in a women's shelter, I was given a list of informal rules by the other staff. One rule that I found shocking was that women who stayed at the shelter were advised, that when out in public, never to acknowledge another woman who had stayed or was staying at the shelter. No hello, no eye contact, no nod....allowing the power of victimization to carry on.
ReplyDeleteAs long as "disabled" is a dirty word to some people there will be those who disassociate themselves with it. As long as disability, in any of its myriad forms, is viewed as a negative thing or an awful fate (as opposed to a *fact* which can be sometimes difficult) the same will be true.
ReplyDeleteBut it exists. Yes, I deal with the occasional unusual challenge, but I am not "challenged," I am disabled. Personally I despise euphemisms. That doesn't mean I don't live my life and get stuff done but it does make it difficult. And I have it pretty easy, really, as far as these things go. You try maneuvering in a world built for 7-foot tall basketball players, and nobody else, and you are 5 feet tall, and tell me you aren't disabled by that alone! If anybody wants examples I can provide them, trust me. Add in the creeping orthopedic issues (weird knees, stenosis) and I don't see how I'm not.
It is a process, though. Hell, I didn't know I am techically a dwarf until I was about 21 and hesitantly attended an LPA event. Nobody had ever mentioned the term, or the far far worse alternative of midget, to me or my family. That seems really weird to me now, a good 15ish years later. But sometimes having a label can really help, as does knowing there is a community of people out there dealing with similar issues, as thinly-spread as they are. I am an anomaly but I am not alone!
I think people who can't come to terms with their own disability enough to be able to interact with others are missing out on a lot. And those who try to forbid others to are perpetrating an awful lot of pain. My life does not revolve around my dwarfism but it is a factor in much of what I do in one way or another, and knowing and accepting that brings me power and peace.
I found it hard to get past George Hislop's differentiation. Seriously? Does no one else find that offensive?
ReplyDeleteI work as a support person for adults with Autism. In my community, there are dances that are held every other week for people who have disabilities. I rememeber taking a new (young) support person with me on one of these outings and she was horrified by the dance. She said that it promoted exclusion.
ReplyDeleteI guess the argument could be made that the dances do indeed promote exclusion, but I think that the opposite argument can be made as well. We all have a desire to gather with our peers. Just because the people go to a dance for people with disabilities does not mean that they don't get to do other things in the community that are inclusive. I think to be inclusive in all regards, we need to support people to be able to gather with people who are like them. I belong to a book club, not because I want to exclude people who don't like to read, but because I want to gather with people who are like me.
I love supporting the individuals to go to these dances, and I always try to make sure I work on these nights. The dances are so much fun. Some of the people I support have high acting out behaviours, or severe anxiety, especially in social situations. For some of the people I support, this is one of the few places they can go where everyone understands. For a couple of the people, without this type of program, they would not be able to go out at all.
This type of gathering allows for growth as well. It's a stepping stone for some of the people. To expose them to social situations in a controlled and understanding atmosphere often leads to be able to go to other events and participate more in the community.
Solidarity is something you get from others who share an identity on life's journey, but a first step is to own that identity. As a straight, white woman I get a lot of choice in how I identify, there are no clues to any hidden identities. As a feminist in my twenties I created a visible identity with clothes and hairstyle; I spent time in 'consciuosness raising' groups and discovered what it meant to be a working class woman in the UK. I grew in strength and pride and was able to take my place in the world without anger. I grew my hair....
ReplyDeleteI am also a carer. Ispent years hating that identity, I prefer to think of myself as an ally, but slowly I recognise a few ways people treat me differently on my own accord, nothing to do with my daughter.
A few years ago I spoke to Dave at a conference. E was refusing to hang out with other young disabled people and I was worried. I found myself asking for his permission to keep encouraging her to stick with it. Of course permission was given and we laughed. I am so glad now that I kept working throught the reasons not to go. She has blossomed.
The thing is, I believe in inclusion and had got confused for a while about the difference between segregation and peer support. We all need peer support.
Thanks Dave, and Micheline Mason.
PS. I'm spending time with carers now too!
I am probably almost as horrified by the idea of a support person, carer, whatever (choose your preferred term, I am not well-versed in what is current) who thinks such a dance is exclusive as she was by the dance itself.
ReplyDeleteIt's not either-or. In an ideal world, it's both. You can take what you learn from your peers and it can help you when dealing with the wider world. And you have a place to go and people to talk to if you are in some sort of need, people who "get it" on a level that others no matter how awesome they are just don't quite grasp because they lack the experience. And that's okay. Sometimes being different is fine, as long as that doesn't mean inequal. Knowing there are other people who have dealt with the same shit makes dealing with that same shit yourself better. Not good, no, but you know you aren't the only one, and I don't have words for how much of a difference that has made in my internal experience of my own life.