Friday, July 21, 2017

A Honking Big Piece of Pie

A research study was recently published that showed that one quarter of non-disabled people avoided conversational contact with people with disabilities if they could. One quarter! A quarter of a pie is a big, freaking piece of pie, it's half of half. Now when asked they said that they were 'afraid of offending' us. Really? You avoid us for our benefit. You think that targeting and then isolating people with disabilities is something you do to protect us from you? Really? You're that bad a person that you are removing you from any possible social contact with one of 'those' people. Gosh, how people can mask their bigotry behind the concept of kindness. 

"Really, I'm doing them a favour!"

Let's see how are the rules of conversation different than they are with everyone else.

1) Don't talk about our bodies.

2) Don't talk to us in patronizing ways.

Hmmm. There are other rules but they are the fine tuning rules that you learn from each individual, disabled or not, as to what they find acceptable.

Those are the don'ts, how about the dos?

1) Acknowledge us in the same way as you acknowledge others.

2) Accept that we exist and ensure there is space for us in line and in ordinary social banter.

Gosh, not a long list either.

Don't tell me that your active avoidance is about this shit. I am not sure if the researchers believed you, thought I think they did, but I don't.

It's not our fault that you feel uncomfortable around people with disabilities. We didn't teach you to see us as less or as inhumanly different or as pariahs to be avoided. Don't know who did but it wasn't us. So don't blame your discomfort on us and don't pretend that visually and socially euthanizing us is for our benefit.

We exist.

We are here.

Grow a back bone.

Say, "Excuse me," if you bump into us.

Tell us how hot it is this summer when we're on an elevator with you.

Ask us if we liked the movie on the way out of seeing the same picture.

How hard is that?

It isn't.

Unless bigotry, not kindness, stops you.

Thursday, July 20, 2017

Chairless Tongue

"You don't sound disabled," the voice on the other end of the phone said, suspiciously, "are you sure you need these accommodations?"

I don't sound disabled.

That's what I was told.

And what exactly does "disabled" sound like? I don't know for certain but I know that whatever it sounds like, it doesn't sound like me.

Do people think when they speak about disability? Do they realize how offensive their words are? I wonder and I wonder more if it matters to them at all.

I was in a position of needing accommodation. I didn't blow up on the phone because I needed what I needed and I didn't want to piss off the person who could give it to me. She was the gate keeper to my successful accommodation so I simply let it go.

Sorry.

I don't fight every fight.

I capitulate when I am in the powerless position that need places me.

Do people who are employed in disability services begin to get a sense of the power they hold in their hands? Does it corrupt them? Does it make them mean? Do they begin to believe that the resources that they manage, which weren't created by them and weren't paid for by them, are theirs anyway? Do they think they can say whatever they want and be suspicious of every person requesting service?

I didn't "sound disabled" so I must have been scamming, I must have been trying to access what isn't rightfully mine. That's what we do us fake disabled people who don't even both to sound disabled.

Well hear this: Disabled doesn't have a sound you fartwit!


Tuesday, July 18, 2017

The Door

I was pushing down the hallway of the hotel in which we are staying. I had pushed through a doorway that separates one part of the hotel from another and was now on my way to the lobby. Perfectly normal start to my work day here in Boston. Now, please notice that I had pushed through the doorway, by myself, without assistance, as this needs to be clear in order for this story to make any sense at all.

A woman and her small boy were waiting at the elevator, which happens to be on the other side of the door I had gone through. She would have been in her mid to late 20's. She and her boy had been watching me come down the hallway while I prayed the elevator would come and take away the audience to my progression towards the lobby. I passed them, she said to me, "You poor thing" and I slowed to look at her, it's first thing in the morning and I had no idea what about me resulted in her comment. "They make the doors too narrow for wheelchairs," she said. I said, "I pushed through the door with no problem." She nodded, the door opened for the elevator, and got on.

I'm now starting my day with 'poor thing' ringing in my ears and it's going to take work to shush that up, push that aside and tamp down my annoyance. I'm starting my day.

Words have consequences.

By the time I got to work it had become a funny story. That conversion from feeling patronized and having reality distorted by prejudice ... I was through the door ... into an anecdote involves energy that could have been used differently.

Like enjoying the ride to work.

Monday, July 17, 2017

The Glue

I've been troubled over the last couple of days over an incident that happened at a movie theatre. Joe and I had just purchased tickets to go see 'The Big Sick' and I was rolling away. I hadn't noticed in the line behind me that there were two staff and two people with intellectual disabilities immediately behind me. We'd arrived early and went immediately to the ticket counter, they must have arrived shortly after.

The first thing said, with me still not knowing anything about them, I hadn't seen them, was "We are a little bit late for the Spiderman movie." The ticket guy must have asked how many tickets were wanted and the same voice said, "Two individuals and two staff." Now I know that theatre is part of a program where staff get in free when supporting someone with a disability.

I shuddered at the way the young man spoke even though I'm damn sure he was trained to speak that way and that he worked for an agency proud of the fact that they don't use 'labels.' However, the way that the two people with disabilities going to the theatre were spoken about seemed to be in some kind of 'code' whose purpose seemed to be the masking of shame with words used as a difference denier. In short, it sounded horrible.

Honesty in speech always sound more respectable, listen to, "Two people with disabilities and two support providers." Doesn't that sound better? Doesn't that sound open and honest and proud. Now some of you are thinking he should have said, "Four tickets." Well, the problem is, there are ticket pricing differences based on the need of people with disabilities who have support professionals along with them. This makes going to the movies more accessible by cost.

What would have been amazing, though, would have been if the people with disabilities had spoken, "Two tickets for us and these are our support workers." That kind of leadership in the personal realm is surely our goal.

"Two individuals and two staff." It still bothers me. It demonstrates clearly the lack of power and the presence of privilege that exists in the relationship between those who receive service and those who say they serve. I don't think that young man who spoke should be judged by what he said, I'm sure that he was following policy and that he thought he was not labelling the people he supported.

Sometimes labels are smacked on someones forehead stuck on by the glue of what we do, not what we say. This is one of those times.

Sunday, July 16, 2017

Anger

I see you see me.

You wash your hands, quickly, then pass me by. You act as if I'm not there. As if I won't know that it was you who made the mess. Who pissed all over the toilet seat in the accessible stall. As if I don't figure into your world, as if I am an inadequate consequence to your filthy behaviour.

But I wonder if you see me, seeing you.

And I know on entering what kind of person you are. Too lazy, or in your mind, too above, the action of lifting a toilet seat. No you leave your piss sprayed all over the seat, dripping wet, stinking of arrogance.

I saw you yesterday, in the mall, you walked by me as I pushed towards the one stall that would accommodate my chair and me. Your face became glued by my anger towards you to my memory of seeing that seat, the puddles of urine, and the damnable task of cleaning it up. I had no choice, no other stall to try. So I mopped up your piss.

Later I saw you, in the food court, with your girlfriend. I rolled by your table and stopped and stared at you. I didn't say a word. I saw her face confused, looking back and forth between you and me. I didn't move, just looked at you with contempt.

I wanted you to know that even as you value me so little, I value you less. I wanted you to know that your were beneath my contempt. Someone you see as being less than you, sees you as less than them.

I saw the change in your eyes as you wondered if I was right.

Let me tell you, I am.

Friday, July 14, 2017

Give the Kid a Moment

I was rolling towards the accessible toilet when a large group of children poured out of the gym. One of the kids was with a staff who, when seeing me indicated for me to pull over so they could pass. I clearly couldn't because I would have to pull into a steady stream of children, there was no room. I saw that the boy had an intellectual disability and that he was having trouble with the noise, the transition and the approach of the young staff who was really frustrated.

Frustration never helps.

Children with disabilities aren't being disabled to annoy you. They have a disability that requires you to surrender some of the emotions that, mixed together, create frustration. He was stuck. He didn't appear to need me to move anyway, that seemed to be the need of the staff ... get out of the way so we can get moving. He just looked at me, looked at the other kids and began to process. It will take him time to process. If I move he will have to start all over again.

I waited, patiently and quietly, a slight smile on my fact to communicate that there was no pressure. As the stream of kids began to dwindle, he stepped over, exaggeratedly, and then walked by me with the staff now in tow.

He needed time.

Disability sometimes requires extra time.

He didn't need  people constantly changing the problem.

I went about my business and he went about his.

Disability is our experience, it's one that needs your support, not your emotional reaction to using time, that you are paid for, to allow problem solving and decision making. Both of which the boy did.

Helping meant waiting. For her and me. And wow, that's hard for some people to do.

Thursday, July 13, 2017

Difference ... Loved Away?

I was clicked in to read a blog written by a mother who made the claim that in her house, her children would never have to come out of the closet because she and her husband were never going to stuff them in one. In her house love would be love and that's the end of it. She wrote this in response to those videos that show kids coming out to parents who, alternately, either love them 'anyway' or throw them out of the house. They can be dramatic, these videos, and show what kids still go through.

While I am glad that the woman who wrote the article is trying to set up her relationship with her children such that they never have to come out, I think she's making a mistake. No, not in teaching her children that love is love and ensuring they understand that both parents will love their children unconditionally, of course that's never a mistake. The mistake is thinking that 'coming out' and the 'need to tell' is something that can be avoided by the work and intervention of parents. Like 'coming out' is something under parental control, not something that is owned by and necessary for the child. This concerns me.

I read so much about how parents who love their kids simply love their kids and because of that they've loved the difference away. That their child's sexuality or their child's disability or their child's mental health status are things that can be made to not matter, not exist in a way that is experienced, by their child. I applaud parents, I say again, who wish to communicate acceptance and love for their children, no matter what.

But the irony in saying "My child who is (or who has) will feel my love and know that they are loved," is a statement that only has meaning and is only being said because of the difference. It makes little to no sense to say it about a typical kid. There is a universal expectation that parents will love their kids, the universality only becomes in question when a difference exists.

Beyond that, there is nothing a parent can do to make the 'coming out' process, the 'identification' process less difficult for their child. It is what it is and what it is is often painful. Coming out is not an experience that is limited to LGBTQ+ kids, it may have been named by that community, but it isn't owned by it. Disabled kids have to come out to themselves as having a disability, they have to go through the process towards self acceptance and identification alone. This process, the identification with difference, the acceptance of one's own difference and the resultant pride in being different, always happens in the context of a social world with messages about what is good, and what is beauty, and what is normal. Parents can soften the blow, but the blow will come.

My concern, though, when reading of parents who love their kids anyway, and who wish to love the difference away ... sometimes don't seem to notice that difference can't be loved away and 'loving anyway' is still a modification of 'love freely given.'

Parents stories and parental experiences are vitally important. We need to hear them, we need to understand their journeys but we need to understand that these journeys are different from the journeys that their children have to make. There are roads we all walk on alone, there are experiences that will always be uniquely ours. The voices and stories of the children, loved anyway, resistantly different, still need to be told.

The idea that our child will never have to come out to you makes no sense at all. Your child, of whatever age, still has to tell. A child's voice still has to say the words. No matter how hard you work to communicate acceptance, you will still have to actually accept.

It's a moment.

Parents of kids who are LGBTQ+ are learning about accepting and honouring and being proud of their child are important steps in their personal relationship with their children.

Parents of kids with other differences, like disability, are still having problems with the idea that 'my kid is like every other kid' trumping 'my kids experiences the world differently because of his disability and I need to understand that difference and allow my child the time and space to understand and identify their difference and work towards pride in who they actually are.' But we're moving there, we're getting the message out. We're coming out as a people. We're discovering our own voices.

And our voice and our experience is important too.

It's different from the voice of parents, it tells different stories, equally important stories, and has it has a right to exist and to expect to be heard.

Our experiences belong only to us.

We experience you.

You experience us.

And there may be great differences that come from that encounter. Experiences that can teach us about each other and teach us how to better love each other.

There's nothing to fear but the need for growth.