We were having tea on a patio. The day was patio perfect, sun but not to much, heat but not too much, shade and just enough. We hunkered down to talk and to people watch. The table one over was taken by a couple of guys with intellectual disabilities, one of who had Down Syndrome, who were accompanied by a staff woman.
I think sometimes those in support providing roles need to establish themselves, to others around, that they work with people with disabilities, that they are the staff, so they do things to identify themselves as staff and disidentify themselves with any possible disability. I've heard, sometimes staff say, with real annoyance, that they had been mistaken for someone with a disability when they were on a community outing. So, to avoid that absolutely horrible and soul crushing assumption from being made, they become kind of uber-staff. This one was doing so by fussing and bossing. "You sit there, and you sit there," she said, to men much older than herself, as she busied herself around. Kind of like she was a mom who had given birth fifteen years before being borne. Finally she found out what they wanted and she headed into the store to get what they wanted, she paused part way there, and said, in that staff voice we all know and used, "don't go off anywhere."
Both men had been very patient with her. I believe they knew what she was doing. I certainly did. The sat quietly looking out at the street scape for a few seconds then one glanced over at the other and when their eyes met, they started laughing. The fellow with Down Syndrome whispered to the fellow with him, "don't run off now," and his friend responded, "and don't you slop tea all over yourself." Then they laughed. She came back and busied around enough establish, for those who hadn't seen the show's opening that established her role, that she was indeed a hierarchy or two above those she sat with.
That short discussion, the recognition of staff's need to subjugate them to upgrade her status, the humour they used to defuse the situation they were in, all of these things are important. It means that these two men had developed enough of a relationship to share these moments together, to check out their perceptions, to recognize that they were in it together, to support one another through was was social demeaning behaviour on the part of the staff ... all these things, which are, of course, the faint stirring of revolution are becoming more and more common.
I'm seeing this everywhere I travel. Seeing people with disabilities begin to talk about and notice the behaviour of those around them. Forming friendships that are as much for a sense of alliance as anything else. Openly talking with each other about the behaviour of those who are around them.
If you want to radically change yourself - first, you've got to acknowledge the problem.
If you want to radically change the world - first you've got to acknowledge the problem.
Radical change, of any kinds, always begins in the same place. The recognition and acknowledgement of the problem. These two men are there. They have recognized that her behaviour was at best silly and worst insulting and they had clearly already begun a dialogue about that.
I believe that every revolution begins with small conversations about small things. In the years I have watched Vita's Self Advocacy Group grow I have seen how small conversations can turn into action and action can turn into change.
The faint stirring of revolution continued. She got back and said something I didn't hear. Then she notice them rolling their eyes at each other. She asked what they meant by that. I couldn't hear the answer, but she looked startled and annoyed.
That's the typical reaction to any minority getting 'uppity'.
Wonderful . . . I hope that staff everywhere will recognize themselves. The only worse thing is when staff meet another staff for lunch, and the people they are supposed to be 'supporting' sit in silence while staff gab with other staff. It's a constant grrrrr for me!
Thank you for sharing and writing so eloquently David. What true champions these men are to maintain a sense of defiant humour in the face of such ongoing prejudice.
I just recently started reading your blog -LOVE IT. I am sharing it with others I work with at a state institution for people with
developmental disabilities. Your comments have made me think about what I do every day and I hope it does that for others as well. Thank you!
Revolution indeed. Thank you for this.
That song from Les Mis, "Do You Hear The People Sing," was playing in my head while I read this. (http://www.youtube.com/watch?v=gMYNfQlf1H8)
Wish we could zoom in on the last scene with the men being "uppity!" I'd love to know what they said, and, well, the rest of their story.
We humans sure place a lot of value on our standing in the social pyramid, don't we?
hmmmm...if it is not ok for two people to snicker and roll their eyes when a fat person orders a chocolate sundae and the next table, why is it ok for these two disabled folks to make fun of and disrespect their helper. They could obviously communicate - why didn't they communicate with her rather than making fun of her behind her back and almost to her face? Double standard.
Anon who hmmmmms, if you don't see the difference maybe there's no helping you.
I guess there is no helping me - but then, I ask for help when I need it. So help me understand the difference between disrespect. The helper was disrespecting the needs of her charges and the gentlemen were disrespecting her. So - we are on their side because they are disabled? Are they "cute"? Are they excused? As I said, they obviously have a voice. They can communicate verbally and non-verbally. So yes - help me understand. Where is the equality now?
Dear Anon "hmm..."
I do not think we can assume anything is obvious; from David's blog we know that these men communicated both verbal and non-verbal but we cannot assume their ability in such a task. I have met adults with a disability that are able to communicate but with difficulty or without clear pronunciation of words. In addition, although it may be disrespectful we are on their side because even those people with a disability that are able to speak up for themselves often still remain unheard. Unfortunately our society still views people with disability as being less of a person and as such they are treated poorly and without respect for them as a person. This is how the carer/worker was treating these men; as people with less value in society than herself. They made fun of her behaviour but did not demean her value as a person.
That is how I perceive the situation described above. I hope this is helpful.
Oh come the revolution.! I just love quietly remaining in the background, making tea or something ( as you know difficult for me to keep it shut! ) and listening to one person telling another not to put up with things and what to do about it. Some great times in the past when I have heard the tricks and deeds done to staff in institutions too by the Rebels!
Self help with someone who can just help you when you might get stuck is what we all need. Yes let the dam burst and the day of reckoning be nigh!
The difference is that fat people aren't hurting anyone by eating food. People who make fun of fat people for eating are just being hateful.
Staff members who talk down to adults with disabilities in order to establish power over them ARE hurting someone. They're trying to force adults to accept being treated as unequal. When the people who they're hurting make fun of this they're not being hateful. They're sticking up for themselves and reminding themselves that they deserve better, and communicating to one another that this is not ok.
Those two things are not remotely similar.
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