Monday, March 18, 2013

All Growed Up

 I am an adult man.

Yes, I use a wheelchair.

But I am an adult man.

For reasons I'm still deciding if I want to share publicly, Joe and I did not march in the Saint Patrick's Day parade with the contingent of staff and members from Vita. Instead we left in time to get over to Yonge Street and watch the parade go by. We found a patch of sidewalk that was lit by the sun and settled in to enjoy the parade. The day was cold but the sun was warm and we had a great view.

People streamed by on floats and in bands and behind banners. I have enjoyed parades ever since I was a kid. I remember once at the Calgary Stampede, in 1965, running out and shaking Walt Disney's hand as he went by in an open convertible. That day is still stamped in my memory and ever since I've loved parades. This parade didn't have a Walt Disney but it did have leprechauns and shamrocks and firefighters so it was just as much fun.

The kids who were sitting beside us were having a great time. There was a cute baby girl in a bright pick toque who every now and then would randomly wave and then giggle with delight. It was great watching them have fun.

But one thing wasn't so great.

Several times over the course of the parade, various people on floats or marching by would point at me and then purposely wave. I hate being singled out like that. I hate being reminded about how visible I am. I hate the sudden and complete loss of anonymity. But even move, I was disturbed to notice that this was done to me and the kids around me. It wasn't done to any of the other adults who lined the streets in my area.

The kids were delighted at the gesture. They all delightedly waved back.


Not so much.

I didn't know how to respond. I didn't want to be rude. So I waved back the tiniest wave I could imagine. To their credit I could see that several of those who waved at me saw my embarrassment and their exaggerated smiles, great for kiddies, changed to looks of apology fairly quickly. One fellow looked shocked as he realised, from my reaction, that he was waving and grinning at an adult man who he'd just embarrassed - I've guessing he'll never make that mistake again.

One of the most profound struggles that we, as disabled people have (and this is particularly true for those with intellectual disabilities) is the fight for adulthood. The recognition of, and the rights accorded to, the status of 'grown ups.' Many of the people with intellectual disabilities I have known or have worked with have been desperate for adult rights, to be free of constant parenting. To be in relationships, to have jobs, to be spoken to in regular tones of voices - all things still accorded to but a few.

I remember, appropriately, being in Ireland as a guest of Down Syndrome Ireland, (whose banner you can see if you look carefully at the picture - it's just behind the Vita banner) and doing a workshop for self advocates with Down Syndrome. I made a joking reference to a young man, perhaps in his early twenties, that he was 'just a kid.' Now I want to be clear here, I wasn't making that remark because he had Down Syndrome, I was making that remark because he was in his early twenties. I think that many of the people who work in my office are 'kids' ... because I'm 60 and they are decidedly not. But, even though my intention was to joke about his age, he took great offence. He gave me a stern lecture about being a man. He wasn't a 'kid' he was a man and he wanted to be treated like an adult. I apologised immediately and sincerely. I got it.

And I got it again.

When I was waved at in the same way as an infant girl in a pink toque was waved at.

I'm an adult.

I'm a man.

And those two things matter to me.


Just Heidi said...

I am a parent of a child affected by Autism, ADHD, Anxiety, OCD, and Pica. When she was first diagnosed as being on the Autism Spectrum, we were encouraged to take any money we had set aside for her education fund and transfer it to a trust fund for when we were no longer able to provide care for her. She was 4 yrs old at the time. She had a severe speech delay/impairment... she was unable to be easily understood by others and she would engage in self injurious behaviours because of this... She was 4 yrs old. We would often get the "Awe, God love the poor little thing." and other similar comments. Our child was becoming the object of pity. That was 6 yrs ago. In those 6 yrs our daughter made huge gains in her development. However, the shadow of her diagnosis still follows her and I suspect, it always will. People with their well-meaning smiles and comments who should chew their words before they spit them out will always exist...

I remember when our daughter was 8 yrs old... running into the school playground one morning, she took her backpack off her back and threw it against a picnic table. Me, wanting to instill the importance of showing respect for our belongings and the property of others asked her to come back and set her backpack down gently. I was met by a teacher who told me that I should be happy that she can throw her backpack... God Love her-at least she can throw her backpack.

I could go on and on about the well meaning winks and smiles, the head tilts and don't forget the comments.

Our daughter is almost 10 yrs old. She continues to make huge gains in her development. She is treated as I would treat any other almost 10 yr old. I have expectations for her and she has expectations for herself.

A very wise man once said... you can't empower someone else - empowerment comes from within' (or something to that effect)I will continue to support our daughter throughout her lifetime... following her lead- not the other way around. Her education fund is still her education fund. Her dreams and goals are still her own-not jaded by a vision of what she should do with her life based on a cookie cutter program. :)

Mike said...

I'm so concerned about the situation with stigma at Plymouth State University in NH. Would you please send them the message about why stigma is so dangerous? I tried to contact the office of Julie Bernier at PSU. Thank you.

Anonymous said...

As a support staff I once took 3 brothers who used wheelchairs to get around to the local Christmas parade. They had a degenerative muscle disease but no cognitive issues. These elderly men had lived in town their whole lives and knew many people. The day of the parade the oldest brother was so excited to be approached by a local reporter who spoke with him about his life, the parade and then took all 3 brothers picture. It ended up on the front page under a horrible headline about the Handicapped attending the Holiday Parade. The oldest brother was so angry, the reporter did not write anything about his 50 year job at a local park, his hobbies, his girlfried or his family. Just the fact that 3 brothers in wheelchairs made it to a Parade!!!!!!! This was not long ago in a land far far away.
I am sorry they interrupted your Parade, I have loved them since I was a child myself.
Take care

Rachel Douglas said...

As a parent of a teenager with Ds I struggle with how other people speak to my son in a childish way. He then responds in a childish way. It is a constant battle to raise the bar on how we treat people with disabilities.

Mike said...

Today I spent an hour in the commons, which is a peaceful place nestled in green. I expressed my concern about the crosswalk there. Human beings are trying to send a message but someone almost got hit today trying to cross the street. I wonder exactly what color crosswalks have to be painted in order for people to respect them. We are not the walking dead but human beings.

I spoke with a cool guy whom I don't know very well and lent him my autographed copy of Dave's book, *First Contact.* (I'll need that book back, but I trust him and told him my name is "Mike"). He is a peace activist but I think he is frustrated. I told him what today is, but he didn't know, so I reminded him. I showed him *The Culture of Fear* by Barry Glassner and told him it was very important. I intended to hand him a NAMI factsheet on PTSD but handed him something else by mistake. I handed him the NAMI factsheet on dissociation. It doesn't matter because DID is not a moral failure, and I have nothing to hide. I wrote the following on the paper I handed him: "The war on terror is a complete illusion. Non-violent resistance succeeds only if one assumes that people will do the right thing."

I have to make dinner for my two daughters. Truth and Life are the most precious gifts to me, without which my life might be poisoned. But we must understand that even those who carry guns do so because they care as deeply as we do. I want to be in the commons tomorrow but it may snow and I have to teach elsewhere. We must use care to develop this and not make a mistake.

I told my wife today that a protest such as this only comes once every century. She and my therapist didn't understand and wanted me to take an anti-psychotic. I said that was fine, did so, got a few hours of sleep, and then headed for the green. I'm not worried now because I know that, deep down, underneath, everything is green.

Mike said...

My daughter just told me that her "blue wolf" is North, in Canada. I have no idea whether that's true, but it very well might be. Her blue wolf is her protector.

Mike said...

The American Red Cross just called for my wife but she can't give blood because she has a cold. Maybe there's something else they have to tell her.

Mike said...

Everyone is snuggled in bed. We read Theseus and the Minotaur from the book my mother gave me as a child.

It's probably ok for Dave Hingsburger to call me at home. Otherwise, no hard feelings, but we should catch up.

Anonymous said...

At times, those who are organizing events encourage participants to notice those who have made a special effort to attend a function. This stands true for weddings, "Auntie Annie came all the way from Scotland. Let's give her a hand. And Uncle Bert from Texas. Thanks for your efforts" - and sometimes true for parades. And to be honest - it does take more effort. More effort to get ready, more effort to get there and often more effort to see. Times we lament "Why don't people see me?", as at the art museaum when they stand in front of the chair - and other times we don't want to be noticed or pointed out. It's hard to find a balance. Sometimes you don't want folks to notice the difference - as you are an adult like other adults, other times you want consideration for your needs. I think it is going to be a while before we can have it both ways.

Anonymous said...

I am almost 30 years old and yesterday a co-worker told me "You're such a baby" because we discovered we went to the same school and she graduated maybe 10 years ahead of me.
I had the father of one of my students tell me that I can't know what to do because "you're just a kid." He explained that he said this because I don't have children. I don't know that I ever will.

I don't have any special needs or diabilities that these folks know about. I'm just 'young.' I was talking to a 25 year old in wheelchair yesterday, and she was complaining about the same thing. She's applying to grad schools and everybody keeps asking her how she could possibly know what she wants to do 'at her age.'

I know this isn't at the root of your post, but I want to add that treating people as kids because they are younger is also not okay, just like it wouldn't be okay for me to say that somebody is 'too old to understand.'