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Disability and Autonomy

October 13, 2012

When I first started teaching I remember that there were students that I didn’t work with, that were in special classes with special teachers. They were divided into two categories, “educable” and “trainable” mentally retarded. I cringe to write these words. I cringe at the implications of “trainable.” The notion is that the child can at least be trained to follow basic instructions and routines, but that’s it.

Today, working with children who have severe cognitive disabilities, I rejoice at the child who learns the first step of the pyramid of learning – to initiate. The child with no language must learn that he can initiate communication. This is done with pictures, accompanied by words, if and when that is possible. But here is the thing. You have to have something that the child wants badly and it has to be something that you can give him or her over and over. In my case, it is the train track. The child requests each piece, and he can also request the engine and the cars, the straight track or the curved. This is the first task of human dignity – to initiate, to want, to request, to build.

In another episode this afternoon, another child protested, “I don’t want to. Stop! I want this.” Yeah, I know, I did close that browser window and offered him something else. But, we rejoiced that he expressed his opinion, he tried to assert his autonomy. We did not view this as rebellion. It was healthy resistance. It was another aspect of being human, saying no. How important that is.

I am not unrealistic. We deal with the kicking and biting, the toileting problems, the non-compliance. But we celebrate the humanity of the child. And that is dignity, autonomy, agency, inclusion and choice. My day is varied. I typically start with half an hour of business meetings, or training the support staff in assistive and education technology and other areas of teaching. Then I work one on one with children, sometimes with other adults in the room observing. Then I read science fiction with all the restless boys in grade 6 the teacher just wants out of the class for an hour or so. The way we run it in our school, kids ask to go out for “learning assistance.” We have all the good books. Not really, but we compete quite well with the classroom.

I have to consult on kids with an IQ of 50 to 150 so the day is naturally varied. I know its hard for some people to understand how inclusion works. But it does.

Here is a great article on disability and inclusion,

Autonomy and inclusion. Choice and control. Dignity and equality. Most people take these for granted as part of their everyday life. But for many people with disabilities, these are often everyday dreams, everyday challenges, everyday struggles.

The FRA is committed to work on disability rights providing evidence-based advice to EU institutions and Member States that can help them to respect, protect, promote and fulfil the rights of people with disabilities – by documenting the impact of laws and policies on the ground, and by showing how they actually affect the daily lives of people with disabilities.

So, what does the right to independent living mean for persons with disabilities?

First: It means more autonomy and inclusion,

•   Being able to make decisions about one’s own life is fundamental: a man who was under full guardianship told us “because of this I cannot vote and I cannot get married. I cannot sign an employment contract: I cannot work”,

•   Equally important is to be part of the community, to feel accepted, and not to be “scared to go out the door and be in public”, as another person told us.

Second: It also means more choice and control,

•   Being able to choose where to live and with whom echoing one of our participants who told us that what he really wanted was “his own key and his own front door”.

Third: It means respect of an individual’s dignity, and equality,

•   Being given the same chance as others of having your voice heard so that, “when  we  talk  about  the  situation  of  persons  with  disabilities,  their problems are not presented by us anymore, but by them,” as one of the stakeholders said in the interview.

•   And having a say in whether and how to be treated.

Read the rest here.

Sometimes, when I am lying on the floor playing with the train, when I am buying goodies for the support workers, sometimes, I fight back the pain. Why do some Christians say that women do not have the right to those things that I work every day to provide to the child who doesn’t even have language?  Why are women told that their role is to submit and respond, to be lower than the so called trainable mentally handicapped?  To live without what are considered basic human rights, initiating, choosing and deciding. But no, it is only for men to initiate, choose and decide, not women. I lived that pain. I live now to prevent others from living that pain. The relationship of authority and submission, the trainer and the trainee, that is a model that once was. Man and woman, human and animal, the intellectual and the handicapped, the trainers and the trainees.

If anyone ever says that being the submissive in an authority and submission relationship is of equal human dignity, tell them to flush that thought down the toilet where it belongs. I don’t treat even the ones who can’t talk as the submissives in an authority and submission relationship. We take that child, and we teach him or her, to initiate, to resist, to choose, to raise bloody hell, but please live your life as a human being with equal human dignity. Bite and kick if you have to, but don’t sit there passive wanting nothing, doing nothing.

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7 Comments leave one →
  1. October 14, 2012 2:20 am

    That is deeply moving, Suzanne. I wish patriarchalists would read this with open hearts and really hear it. Somehow I doubt if they will.

  2. October 14, 2012 9:27 pm

    Your post makes me think of Nancy Mairs’s essay, “On Being a Cripple.”

  3. Suzanne McCarthy permalink*
    October 14, 2012 9:48 pm

    Kurk,

    I have just read it now. I had no idea. It so very touching. Thank you.

  4. October 15, 2012 12:36 pm

    I linked this on Rachel Held Evans’ “Sunday Superlatives.” So if you see a big jump in pageviews, that’s why!

  5. Suzanne McCarthy permalink*
    October 16, 2012 1:01 am

    :)

  6. Betsy permalink
    October 17, 2012 10:33 am

    Wow. Thanks for sharing and for all you do for those precious children.

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