|Image description: The word 'HARD' in black and white block letters|
I said something to Joe that has been bouncing around in my head for a few days, "Sometimes I think they make it hard on purpose." I knew that I had heard that expression at a different time in a different place, and I knew that it was something that I had found important, had learned from.
After a while of chasing for the memory. I gave up. Memory doesn't like to be pursued, I find as I get older, it likes to show up at it's own time and pace. So, as I said, I let it go.
I saw a couple, downtown, walking together through the mall, she had Down Syndrome and he Cerebral Palsy. He drove his chair with a kind of scary, shaky skill, and she walked beside him with her hand resting lightly on the back of his chair. A lovely intimate scene.
And I remembered.
It was many years ago, I had been called to consult on a situation where a man and a woman had been separated by their support team because they were concerned that, as they had a disability, they were unable to consent to sexual behaviour. That they each lived, on their own, with minimal support didn't play into their figuring at all. To prove their point, one of the staff had developed a sexual consent test and both of them had failed. But, good for them, their persistence paid off and I was called in.
After meeting with both of them in turn, I felt it odd that someone would think they were non-consenting or that they weren't able to consent. They were very capable people and, in chatting with me, knowing it was about sexuality and relationships, they both seemed determined to prove to me that they knew what was what and what went where. They both said, with great emphasis that the test they took was unfair. The agency was really loathe to share the test with me but I insisted, couldn't do a report without it you know, and I was shocked when I saw it.
It was handed to me by a secretary who popped into the room where I was meeting with both of them. I began to look at it and my face must have changed in some way because the fellow said, "They make it hard on purpose." And, they had. There were words like coitus and fellatio and zygote ... words that I have never used in any sexual context at all except in situations like this when I write the words for some purpose. Sexuality is a plain language subject if anything is. No one ever says, "Would you like me to perform fellatio before we engage in coitus?" No. One. Ever.
I took the test, translated it into plain language, this was before the plain language movement, by simply using words that were easy to understand. They passed with flying colours.
They make it hard on purpose.
I had just started working in the field and a woman was running a bed making program on a (not with a) woman who lived in the home. I was new so I was shadowing staff, agencies should be really careful about this approach to training, and I watched the woman undergoing bed making training quickly and efficiently make her bed. She was told that she had failed to meet criteria because the pillows weren't placed properly. I was surprised because I figure if they are at the top of the bed, they are in place. The woman being trained looked deflated.
The program had been running for a couple of years and while she could make a bed, she hadn't met criteria. I asked the staff who let me in on a secret - set the criteria really high and you can keep a program running for years. If the program succeeds you have to write another one. This way was easier.
They make it hard on purpose.
I wonder how much of this goes on. People with disabilities being kept from sexuality or relationships or free community access or job opportunities by people who have made entrance hard on purpose.
I think back to that door. I think back to how easy it could be for me to have gotten in. Instead, Joe ran pushed the door opener then ran back and helped me up and then a quick turn to the right to get into the door before it closed on us. It could have been easy. Really easy.
But it was hard.
I'm not sure if it was on purpose.
Or if that even matters.
This makes me very sad. I have long had feelings that this sort of shit was actually happening. Now it's confirmed.
I've heard of something similar regarding IEPs (Individualized Education Plans) in the schools here. Sometimes the goals are set far too high, and if the student fails to meet those goals too many times in a row. they can reclassify the student--which means they can adjust their stats. As a result, I pay close attention to the goals they're setting for my daughter. Children deserve the best education they can get, not whatever education someone feels like providing.
Glee, not only is it happening, its been going on for a long time.
What makes us think that we can do this to people? It is so twisted.
Are people in Human Services forgetting about "successive approximations?" Dave that might be a great newsletter article, paired with what you just wrote.
What? Disabled people would like to have the rest of their rights?
Of course it is made hard on purpose. It has ALWAYS been made hard on purpose. It's easier for the 'caretakers.'
Dave, you are a total rock star.
Of course it matters, Dave. If you hadn't had Joe with you, would you have been able to access the building? Others won't be able to if the situation isn't changed. It matters. A lot. samm
I think it matters because the educational and advocacy approaches to things which are "hard on purpose" are often different than those which are hard because no one "knew better."
People of good faith who don't know better often do better simply by knowing.
People who make things hard on purpose because they are the ones in power won't do better just by being told that what they did was hard. Addressing this power differential requires a much more concerted advocacy approach than simply education.
Intent is not magical but intent does matter.
Had to look up 'zygote'; doubt if I'll ever use the word. Yup, there's a lot of power tripping and protecting the money out there. We all need to know as much as we can to progress, succeed, etc. Thanks, Dave, and commenters.
The purpose of a bureaucracy is to justify its existence. When the rules are made so difficult that only a specialist in the rules understands them, then who can abide by the rules without a specialist? Unfortunately, what you've called attention to is a symptom of society on the whole.
Things like this happen to everyone, though not near the frequency or severity as it happens to folks with disabilities. And the even scarier part? Some of the folks who make things hard on purpose - do so because they care . . . .
Thank you for giving words to this! And for your strong advocacy!
For me, the "They make it hard on purpose" is the "access" of the World Trade Center PATH Station in NYC... the distances one has to cover could only have been designed with electric wheelchair users in mind because they are insane if one is mobility-impaired in any other fashion and I'm not certain the ramps are at the proper incline (though some are, I think, still temporary as the site is still under construction), as well. At least there are now *two elevators from the platform to the mezzanine level (at least at the platform my train utilizes) instead of the one that used to be at the very back of the platform (which, of course, made the distance to travel to the next elevator even larger).
And yes, there are escalators for those of us who can use them but they direction them according to perceived use depending on time of day so often one is still walking past two set "up" before finding the one -- if it exists -- going down. Or just walking to those elevators.
I would love to know what those actual distances are...
They've been doing this a long, long time.
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