Wednesday, June 14, 2017

Sitting Outside as Rebellion

I was sitting outside. The weather had just crossed from warm to hot. I was waiting for Joe to bring the car. I wasn't doing anything more that watching people go by and soaking in the heat. I was loving it, remember we Canadians can wait a long time for summer. A man was coming my way, I saw 'the look.'

I wonder if other disabled people notice it as well. It's a look that says, "I'm going to intrude into your life, even knowing I am a stranger to you, because you need me.: At lease when I see it I can prepare for what's coming.He got close to me, not weirdly close, just conversation close and he, this man a year or two older than me, "You need to go in to where there is air conditioning. It's too hot to sit where you are." I told him that I was good where I was, he said,"Well at least move into the shade." I told him that I was enjoying the sun. He actually threw his hands up in frustration as if he'd just spoken to a disrespectful child who wouldn't do what he was told.

I'm 64 and, I have no illusions about this, I look 64. Yet people still feel compelled to parent me. People still feel it's their right and their role and their responsibility to act as parent towards me as if I've never actually grown up.

While I'm used to it, it bothers me every time. I think it's because, in that situation I often forget the dynamics, intrusive stranger/me, and retreat to parental concern/me. I explain what I want, I hold my ground but I forget they have no right to tell me where I can and cannot sit on any particular day.

This innate need to parent the disabled that some people have, I wonder if it sometimes creeps into care. I wonder if staff start seeing those they support as those they parent. Yikes. That's a mistake.

I wonder if parents of kids with disabilities are able to transition to parents of adults with disabilities.

I know you know that I have the assertion skills to deal with these instances which many with intellectual disabilities don't. But do you know how it chips away, slowly over time, at my sense of self as a fully adult man? Maybe because the damage can't be seen, like if he'd punched me with his fist. But he did punch me, with his assumptions and stereotypes, and though I never bruised physically doesn't mean no damage was done.

Prejudice and assumption hurts, when done by a stranger.

Imagine how it feels when done by someone who says they love you or someone who says that their job is to support you.

Just.

Imagine.

5 comments:

Cait Hawthorne said...

I am 23, a wheelchair user, and mother to a six year old. The weirdest thing for me, is when strangers extend that "parenting" to assume that I need help to parent my own child.

Every weekday, I walk him to school and back. At one point, I decided to teach him to cross a street alone. This is a small side street, very few cars, directly in front of the school. It's a pain with the wheelchair, as the sidewalk ramp thing has a lip of around 2-3 inches. So, I've explained to him, there's one stopped car, and he hesitates but goes to walk confidently across the street.

Suddenly, there's a lady, another mom, who comes running over shouting "WAIT, I'LL HELP YOU!" And positions herself like a star, standing in front of the still-motionless car. She turns to beam at me and says "Its okay, I don't mind helping! It's our job to take care of those that can't do it themselves! You can ask for help. " I responded somewhat grumpily that I hadn't needed help, and get a "well Oh-KAY then" with one of those patronising smiles. My son, a bit disgruntled that she took that moment of independence from him, crosses the street and heads to school. I heard him telling her quite matter-of-fact-ly, "My mom is fine. If she couldn't do it herself, she'd have someone to help. And me too."

On another note, I'm sure some caregivers are problematic. Many aren't, however. My partner works for a day support organisation for developmentally disabled adults in the GTA. They teach them about their rights, and respect them as adults. They swear, dress how they want, and have their decisions respected. They chat about boyfriends, girlfriends, jobs, hobbies, and family. So, thankfully, it's not all bad.

Unknown said...

very poignant. and I am sad that this happens so often..
clairesmum

Alicia Butcher Ehrhardt said...

The conversation could be like this, after you politely let the other person have his say:

Dave: "Let me get this straight. You feel perfectly free to talk to a person you don't know, with needs you don't know, and to tell me what to do, is that correct?"

OP: blusters about somehow.

Dave: "Okay. I am perfectly capable, with no help from random strangers, of deciding whether I'm hot or cold, and whether I want to do something about it. Good day, sir."

laura said...

I live in a place in the US where people tell me almost every day that it is their "Christian duty to help me. They cross streets full of traffic to assist me. Stop me from going about my business so they pray for my healing loudy. I am a nanny and preschool teacher to children with disabilities. It's my job parents pay me to watch and educate their kids. I can't begin to tell you the number of times in a week they want to help me cross the street, ask me if I am ok when I am sitting in a park reading a book ask me if the girls' parents know they are with me... you name it. But the worst one was last week as I was in the grocery store looking at the coffee selection and this lady also a customer in the store, was shouting "young lady at me from across the store. I had that same feeling Dave described. Cue me rolling my eyes. When she got to me she asked me if my mom knew where I was. My mom lives two hours from where I live so I said I doubt it. She lectured me about not telling my mom where I was,because she would worry and then informed me that they wouldn't let me take the coffee home unless I paid for it When I told her that I was wwll awere how super markets work and that my mom didn't care what I was doing seeing as she lived in anither part of the state. I wished her a good day she threw up her hands and exclaimed angrly she was just trying to help and I didn't need to be so rude... I am almost always called out for my rudeness. I've never figured that out :0

Shannon said...

I am a wheelchair user and anytime I sit still somewhere, reading, waiting, just hanging out, or whatever, I am asked if I need help or if I want them to get the door. I have been asked if I need help while looking in the mirror in a public bathroom. Once I was waiting at a bus stop and there happened to be a small church there and a lady came out and looked amazed, and asked how I got there. I pointed out that it was a bus stop. Almost everyone here drives and many people have no idea where the bus stops are. Last time I was at the train station someone grabbed and started pushing and maybe was a little offended when I said please ask first, that scares me when someone grabs me from behind, because he said something like okay, I let you go, you're on your own. Another time a guy started pushing me across the street in Manhattan and pushed me into the curb cut edge in such a way that I dropped my stuff and started tipping forward. Some ladies who were passing us gave me a pity look.