Saturday, June 25, 2016

The Time of Her Life

Image description: A clock face with the 12, 3, 6 and 9, diving the face. Between 12 and three the word 'congregate' is writting in red and underlined with the words 'for your own good' written in lavender. between 3 and 6 the word 'segregate' is written in red and underlined and in purple below are the words 'for the good of others' between 6 and 9 the word 'restrict' is written in red and underlined and the words 'for the good of the system' are written, and between 9 and 12 the word 'freedom' is written in red and underlined with the words 'for your good from your voice' are written.
This is beginning to happen more and more often. And because of that I can testify that dreams, even impossible dreams, do come true. I am not writing this as an 'inspirational story' I want to be careful to assert this right up front. This story isn't about anything other than how wrong we, who are professionals, and we, who are parents, and we, who are paid to assess, can get things very wrong. This story isn't about anything else but how the voice, clearly spoken, of someone with a disability can be buried under the opinions of others, smothered by stacks of paperwork and silenced by expertise. That's what it's about. It's about running into people, years later, and seeing the life they had now, and what we predicted then.

I don't want to even remember how long ago I met her. Let's just say I've been doing this now for over 40 years and it was near the start of my career in the community. I wasn't long in institutional care, so very near the beginning. She was known to be "non compliant" at the time, which just meant, and I did see that then, that she was what my Grandmother would have called, "contrary." She didn't willingly submit to the authority of others. She wasn't "out of control" even though everyone thought she was. She never lashed out physically, never broke anything purposely, never spat, or kick, or slapped anyone. She did break rules, but only the ones she thought were unfair.

When planning for her future she stated that she wanted to live independently. Everyone thought this was a very bad idea. They came up with all sorts of reasons why it was an 'inappropriate dream,' as if there is such a thing, but, though no one said it, her gender made the difference. I'd like to say, remember this was nearly 40 years ago, but I'm not sure that the same kinds of decisions aren't being made today. They came up with the 'excuse' of vulnerability. It was an easy sell. They talked about her vulnerability from only one perspective: the world is more dangerous for women than for men. They didn't talk from the perspective of disability: people with disabilities may well be safer walking down the street in their neighbourhood than they are in the group home in which they live. Now we are working to change that now, but we weren't doing jack shit about it then.

From the very first, I have worried about the conception of people with disabilities being vulnerable because they have a disability. That makes us lazy. "Well, can't change that, so we're done and dusted." I've always thought that because we didn't teach safety skills and abuse prevention skills and self advocacy skills, we were kind of responsible for at least some of the issues regarding vulnerability. I had not, at this time, developed 'The Ring of Safety' which are the skills people with disabilities need to learn in order to live more safely both in services and in the community, so all I could do was suggest that given her skill set, she needed to learn skills that would allow her to fulfil her dream and move into the community. Here's what I hate writing, because of immense pressure, not from the agency I worked for, but from the team supporting her. I did add a line in the report about her vulnerability.

This is something I regret.

I have not always been strong enough to do my job both ethically and well.

Well, she did well on her behaviour plan, primarily because the plan looked at how staff needed to respond when 'behaviours' occurred and when resistance was met with reasonable discussion, a new kind of relationship was begun with the staff in the home. I don't know what happened in the intervening years, because I was done, and I was gone.

Then, the other day, I noticed a woman in a scooter, headed towards me smiling. I thought I recognized her, so I waved. She pulled up beside me and said 'Hi.' It was the voice. I remembered her voice. We pulled off to the side to talk. She told me that she'd been using the scooter for about a year and laughed and laughed as she talked about the things she destroyed learning to drive it. I asked her where she was living and she told me about her apartment a bit nearer the top of the city. She paused and looked at me, "I'm in my own place. I've had it a long time."

I was thrilled. I knew this was her big dream, her professionally determined, psychologically assessed, 'impossible dream' came true. I asked her what it was like to have her own place. She looked at me strangely. She said, "People ask me that all the time and I don't know what to say. How do you like having your own place?"

You know I don't think at all about 'liking having my own place,' I like my place but that's a different thing. I never assumed I wouldn't have my own place so having it was kind of immaterial. What I had taken for granted, she had had to fight for, tooth and nail.

We spoke a few more minutes and then she said, "Do you still work at the same place?" I told her I didn't. Then, I said, "I want you to know I'm different now, I listen better and I have more courage about what I need to say and when I need to say it."

"Good," she said, "good."


Alicia Butcher Ehrhardt said...

I know, very remotely, a couple of people in the same boat - wanting to live on their own, but not being able to get the services they need to do it, and I have no idea what to say or do.

Is there a general resource I could mention? Something they could read to figure out better options when everyone in their lives says, 'No'?

I can't help - even if I knew them better, I'm on the other side of the country. One is intellectually disabled but mobile - and used to drive, and I believe live on her own, until her parents got worried because she had a boyfriend, and she was put in an institution where she's 'safe' but not happy; the other has very little mobility, but was living on her own until the system stopped providing the help she needed, and institutionalized her, too.

If it were someone closer, I'd know the circumstances better. I just know they're unhappy where they are - and I don't know if it's because the places are not very responsive.

Thanks. Your story brought up all my doubts again.

h smith said...

Are there any active disability rights groups near them Alicia? I feel thats one of the things missing in my life, having independant living disabled people to point services at to show them that being disabled doesnt mean having to have a restricted life, and to be able to find things out from about how to make things possible. Since becoming a wheelchair user 6 years ago I've met a total of one other wheelchair user, and he was a git, and a ton of health and social care people who think my body is the problem rather than that their attitudes are. We need 'outreach advocates' from the disabled community to help free people from unwanted 'concern' and patronisation, and that doesnt seem to exist in the UK in any visible, accessible way but even one similarly disabled supporter could be the wedge people need to get doors open to having the lives they want.

Also, whats the name of your novel please?

Andrea Shettle, MSW said...

If you're in the United States, check out the National Coalition on Independent Living website at to find the independent living center closest to where they live. Some other countries have independent living centers too.

Frank_V said...

Most people never pursue their dreams because they know society will not support that dream. And that's why I keep my dreams a secret, not because of my disability, but because of society's negative attitudes towards dreamers.

And I greatly appreciate your ability to own up to a past mistake. When I grow up, I want to be more like you sir Dave!