He was resolute. All around him were frustrated. A man who used to love the community, going to the cafe, playing pool at a small pool hall, hanging around the mall - stopped. Just stopped. He was nearly thirty, had lived comfortably all his life with his Down Syndrome, he knew who he was and liked who he was. But then, suddenly things changed. It seemed that one day he noticed being noticed. For years he had simply not seen the stares or heard the giggles. He didn't associate the horrid 'r' word with who he was, didn't realize it was being used against him. But suddenly, one day, he woke up to the prejudice that had surrounded him. He was devastated. Flat out devastated. His response was simply to not go out. He decided that he'd had enough of social violence and the casual cruelty of strangers. That was it. I was to help motivate him to go back out into the community.
I thought of him yesterday as I got ready to go down to the car to make our way to Chatham and Wallaceburg where I was to spend a couple days. I thought of him as I got my sweater on. I thought of him as I pushed my chair down the empty hallway to the elevators. I thought of him as I rode down the the lobby - a busy lobby where there are always lots of people. I thought of him and I understood him. Really. Finally.
Being cocooned in my home due to illness was frustrating on one hand, I like to be out and about. But, I enjoyed simply being in a place of absolute safety. Where I was me, simply me, in all my glory. I wasn't 'hey look at the fat guy'. I wasn't 'hey, it's amazing the wheelchair doesn't give out under him'. I wasn't 'God, it must be horrid to be in a wheelchair.' I wasn't the stared at one. I wasn't the talked about one. I wasn't the one who didn't fit. Here, at home, I fit just fine. We live our lives well and easily together. There is a temptation to give into the desire to just say 'to hell with it - I'm staying where I'm wanted'. I can't do that, of course, I have a life and I have things to do. But as I pushed down towards the elevators that would take me down into that life, I knew I was leaving safety. I knew I was leaving sanctuary.
It takes courage to be in the world. True courage. To see being seen. To notice being noticed. To hear what is meant to hurt. It's not easy.
Then today I worked with some people with disabilities in a hotel conference room. I saw them negotiate the same social world that I do. They are looked at for different reasons, but they are still looked at. They are noticed with different eyes, but they are still noticed. They too, hear words, whispered loud enough to hear. But I saw them laughing and talking with each other and their care providers. I watched them 'living anyways' maybe 'living in spite of ... not in spite of disabilities ... but in spite of spite.'
They got up and went out.
I got up and went out.
There is no cheer, except perhaps, in the deepest heart of freedom.
Ahhh...the cage. Yes, it's nice and cozy and safe in there. Sometimes others try to lock us away to keep us safe or hide us from society. Sometimes we go ourselves because we think it's what we want, but a cage is a cage is a cage.
ReplyDeleteSafety, safety. WE all love to be safe, protected, free from fear (to quote a lovingkindness blessing). And sometimes that safety comes from community too. I am reminded of this by my daughter, who has recieved lots of praise and comfort from her so-called disability (Down syndrome) because it spurred her creative juices (she created a dance called I Am all about Down syndrome and inclusion) that has allowed to to travel and perform (with a community of peers) across the country. But also, each time she hits a major transition point (from grade school to highschool, out of one high school to another, and now from high school to out of school!) she struggles with what it means to have Down syndrome. I mean really struggles (includes tears). When she was younger it was "YOu have to tell them that I am from Down syndrome." She wanted to make sure that they knew her "otherness," her immigrant status. That one made us think. But as we go, it also makes me realize that this fear around transition (and this fear is so relatable) means that when she is NOT in transition she has made her life, her community, a welcoming place. That she is welcome and safe. And that makes me feel good. That there is safety in daily lives and that home can be an expanding place.
ReplyDeleteThis is not to dis her sense of being an outsider at all, but to marvel and enjoy all those people and places that she makes her own and that welcome her. This is good.
I know a mother with 3 sons who have autism. The oldest (almost 17) has all the classical symptoms and the other two are not neurotypical either. Yet, she takes them to all of the places that they like, out to eat, out for ice cream, swimming, etc. When they were smaller and had an overload in public she would get "comments." You see, they don't "look as if they have a disability." She finally resorted to handing out business cards for an autism web site. Now that the oldest is 6'3" and 215 lbs, she does not have to do that anymore. She shouldn't have had to do it in the first palce.
ReplyDeleteOh, the anonymous poster above was me. :<)
ReplyDeleteYa know Nan transitions scare the heck out of me too. I'm long since out of high school and tho my struggles are different in some ways then your daughter's as I was reading your comment I was think "oh yeah I hate that too. I hate anytime I have to meet someone new, because I feel this incredible pressure to make others feel comfortable with me. It was ingrained into my brain somewhere along the line that in order to survive in this world that was MY JOB. So though I am a very social person and I like to be as active in my world as possible sometimes it just feels like to much effort doesn't it? Now most days without I push through that fear. I know rationally now that it is really not my job in life to make everyone like me. But I fight that demon every time I have to start something new even if its something I am otherwise looking forward to doing. So tell your daughter she's not alone in this feeling. Hopefully with your continued support it'll get a little easier for her to get through as she gets older too. Sadly I don't think for a lot of us it ever goes away completely. But I've never regretted getting out there because even when it doesn't go well it it as chance to learn about myself!
ReplyDeleteThought provoking post & good comments. Thanks all...
ReplyDeleteI rarely notice the looks, comments, stares, whatever. My usual "everyone is good and likes me" mindset doesn't suffer much refutation.
ReplyDeleteIt may make others think of me as less functioning, but I think those aware enough to notice have a much harder time than I do. I had an aspie friend tell me that he could never go back out in public after having a public meltdown, because of the looks. I don't notice. I'm grateful for being "less functioning", in that regard. I can't even imagine the horror of it.
Going out or staying in is a choice. I kind of agree that staying in is a bad choice. But what you're describing sounds like trying to empower someone rather than respecting their choice.
ReplyDeleteYou sure have a lot of followers Dave. I never looked at that sidebar before. And yet you still make time for everyone.
ReplyDeleteYou're so right about the safety. Planes, TTC, walking, parties - they all make me anxious. Even long escalators - I am afraid to look to the bottom of them. So I try to avoid all those places, and my husband is a bit of a cocooner too on my behalf.
I am afraid of what will happen when I retire and the urgency of going out is no longer there
Annette