Tuesday, April 22, 2008

Progressive Coercion

There's a pattern I've noticed recently. People, especially parents or service providers, decide that a certain way of treating disabled people is wrong. They speak out about it. And generally that's a good thing. But then it somehow turns into yet another set of rules of behavior that disabled people are coerced into, even if they resist it.
An example: Awhile ago, some people started saying that treating developmentally disabled people, especially adolescents and adults, as if they're much younger than they are (in aspects that aren't necessary for proper care - ie not including things like changing diapers) is not a good thing. Many developmentally disabled people would agree with this. But somehow, for many service providers and parents, they interpreted this to mean that developmentally disabled people should not be allowed to act in ways considered typical of a much younger child. This led to things such as actively trying to discourage adolescents and adults from playing with dolls or other 'immature' interests and play. And that, like pressuring them to act younger, is oppressive.
Another example: David Hingsburger, in his video The Ethics of Touch, said you shouldn't go around hugging developmentally disabled people that you work with. Which I agree with. But then, in reply to a question about the developmentally disabled people who often initiate hugs, he described a method for training them out of that. Because somehow, they're not allowed to want touch beyond what most people their age do. (My policy is to go by mutual comfort. If they seem to want the touch, and I'm okay with it, then it's fine. This means they either expressly consent to the touch or initiate it. For example, I hug back if they hug me, and sometimes I ask children if I can pick them up and twirl them around.)
The biggest problem with this pattern, in my opinion, is that the focus is still on how the disabled person should behave, what the disabled person should do. And it's still being dictated by nondisabled people. They challenge some specific problem, while ignoring the power dynamic of helper and helped, the controlling others 'for their own good' rather than letting them have freewill and choice. The power dynamic, and the focus on the disabled person as the problem, remains unchanged, meanwhile they get to act like they're all progressive and liberal and helping the cause of disability rights.

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Blogger Dorian said...

I love your take on hugging. My 7 year old son has autism. He is a HUGE hugger. Granted he's only 7, but it's probably the single most favored trait by people who meet him. We have had to work with him on not kissing everyone, including his 1st and 2nd grade classmates, but otherwise his hugs are loved, cherished, even looked forward to by many.

Keep hugging!!!!

7:24 PM  
Blogger Ivan said...

interesting post, Ettina. I'll have to read it at a more sane hour.......couldn't really wrap my mind around it except to say that it sounds interesting.

The Integral of athenivanidx

10:57 PM  
Blogger Dave Hingsburger said...

80 percent of women and up to 60 percent of men with disabilities are sexually assaulted or raped - most by service providers. The idea of establishing a professional set of boundaries in the field of disabilities is aimed at reducing abuse and requiring service providers to help establish skills for individuals such that they don't need or desire touch from the group that holds all the power.

3:01 AM  
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7:17 AM  
Blogger fledchen said...

I must respectfully disagree with the absolutism of "no hugging between staff and PWD." People with developmental disabilities are frequently socially isolated, and are not given much free choice in the people with whom they are permitted to interact. Enabling social contact with people who are *not* in positions of power should be an equally important goal. Denying people physical contact (if they want it) without giving them any alternatives is cruel.

6:20 PM  
Blogger Dave Hingsburger said...

Fledchen, so the logic of your arguement is the people that are most responsible for the social isolation of people with disabilities - the forbidders of real relationships ... they are the ones who should have exclusive access to the bodies of those with disabilities? Odd.

12:28 AM  
Blogger Ettina said...

I understand the concern about abuse, but I don't see why you should try to get the person to stop hugging others because of that. I think they should be allowed choice, which means both no forced affection and being allowed (if the other person is willing) to display affection. And besides, the focus shouldn't be on what the disabled person does or does not do that makes them more at risk of abuse, but on the abuser.
I would think it a good idea to try to teach them to ask, verbally or nonverbally, before hugging. So if someone doesn't want to be hugged by them, they can say no.

6:17 AM  
Blogger Ivan said...

Dave: I don't think that's what she meant. she just meant that if there is no one else to hug......let them hug the staff. However, I understand the problem with that philosophy, but what's the best way to fix it?

I know that if PWD are allowed and encouraged to hug their staff.....they might get the wrong idea that these people have the best intentions for them (those in institutions or whatever).....but some staff really do.

Ettina: where's the dbc stuff?

hope its up when I get back..........which will be after 10pm tonight.......and I may not even get to read it then because I have to wake up really early tomorrow for church........it's Orthodox Good Friday.......we have the service of the Royal Hours at 9am tomorrow.


Ivan of athenivanidx

9:02 AM  
Blogger fledchen said...

Mr. Hingsburger, that is not what I said and not what I meant. I do not understand how you came to the conclusion that I think that the imbalance of power and exclusivity of contact is something that I think *should* exist. I was, in fact, arguing against staff having exclusive control over contact, but recognizing that this control and power will not go away just because it is bad. I feel very upset and attacked by your accusations.

I apologize for my lack of clarity. I do not always remember or understand how to show all of the steps in my thinking process so that I can relate my conclusions to others. I should have made it more clear that *both* issues should be addressed.

What really needs to be done is take the power and control away from "caregivers." The relationship between assistant and assisted should have equal power.

12:56 PM  
Blogger agent mule said...

Check out this new How’s Your News? site dedicated to their current adventures as disabled people trying to make a mark on popular culture

6:14 AM  
Blogger Ettina said...

"What really needs to be done is take the power and control away from "caregivers." The relationship between assistant and assisted should have equal power."

That's part of my point. And I was pointing out how it interferes with that to be talking yet again about what you need to 'get the disabled person to do'.

6:20 PM  

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