You are currently browsing all posts tagged with 'self-advocacy'.
Displaying 1 - 3 of 3 entries.

It’s a Matter of Trust

  • Posted on September 10, 2014 at 10:00 AM

There are those who believe that people with autism, i.e. adults with autism who have the resources to self-advocate, should lead the discussions and decisions related to autism. Many of them have expressed it this belief as a matter of logic; others have expressed it as a matter of justice; and others have demanded it as their right. Those outside of these circles sometimes see this demand as self-advocates wanting to wrest the decision-making powers from parents and researchers and practitioners.

There is some truth to their claims on these powers, but there is also some untruth to these claims. With regards to researchers and practitioners, it’s a matter of scientific practice and scientific integrity. They want to control their own efforts, and they have a point in that regard; a scientist should not be forced to study something that does not interest him or her. Fortunately, the public doesn’t have to fund the objectionable research particular scientists may wish to engage in, but that doesn’t mean they won’t find funds elsewhere. But, for the moment, I’m not concerned with researchers or practitioners.

As a parent, I empathize with the position of parents. That position can easily be summarized: You don’t represent our children. Whether we’re talking about adults with autism or researchers and practitioners, the truth is that you do not represent our children, no matter how much you might want to do so. If our children are of age and have the necessary resources to self-advocate, then they can self-advocate and then we have to accept their rights to do so. If our children are not of age or cannot advocate for themselves, then we have the right and responsibility to advocate for them.

For some parents, it truly is a matter of power. Some parents continue to exercise excessive power over their children long after their children are able to engage in self-determination, self-advocacy, and self-fulfillment. They actively seek to deny their children the necessary resources to self-advocate in an attempt to maintain control of their children; they may also actively discourage self-advocacy. For the moment, I’m not concerned with them.

I’m concerned with the parents who advocate for their children because life has taught them that no one else will do so. I’m concerned with the parents who have been burned by school systems, medical facilities, and governing bodies. I’m concerned with the parents who know that their children’s interests are threatened and who stand up to speak out against those threats.

We will not let you advocate in the names of our children, because we don’t trust you. Our ability to trust has been damaged, assaulted, and betrayed. We’ve learned the hard way that “the system” doesn’t really protect our children’s interests unless we advocate for them. We recognize that you may be well-intentioned, but that doesn’t mean that you know what our children need. Furthermore, we recognize that you may not be well-intentioned; you may be self-serving and we know what serves you does not necessarily serve our children.

If you earn our trust, then we can cooperate with you and even collaborate with you. But we cannot step aside. We cannot leave the work for you to do. Our children need us to speak up. We cannot trust you to do so.

Review: Adam

  • Posted on March 28, 2011 at 8:03 AM

Adam tells the story of an Aspie, named Adam, who must adjust to some major life-changes, including the death of his father, meeting a woman who becomes his girlfriend, and losing his job.  The story is told with an awareness of the neurodiversity movement, which I like.  I also like how this awareness is used to characterize Adam, not as a major plot element in the story.  Self-advocacy and the inherent worth of people with Asperger’s is a subtle power throughout the story, but it’s not “the” story.

I watched this movie with my husband for our “date night.”  In retrospect, it might not have been the best “date” movie, but we were both engaged throughout the movie.  We found the story compelling, though some parts were painful to watch.

Despite the strong influence of the neurodiversity movement, this isn’t an advocacy piece.  There are elements of advocacy inherent in the story, but the movie is about the story not the advocacy—which makes it a stronger work of art, in my opinion.

I am a bit concerned by how stereotyped the main character, Adam, seemed to be.  Max Mayer, the writer and director of Adam, credited “lead actor Hugh Dancy with a lot of the character’s success,” which suggests to me that both Mayer and Dancy are responsible for the stereotype.  Unfortunately, this “universal” depiction of Asperger’s seems a default position when people outside a specific sub-group of the human population try to portray people within a sub-group.  However respectful they try to be there’s a reliance on a recognizable conglomeration of characteristics that, inevitably, come across as a stereotype.  (Not an excuse, just my explanation for a disappointing element in the movie.)

For the most part, the movie was satisfying.  I especially liked Frankie Faison as Harlan, who has his own story that was suggested but not really told.  I wish the ending was a bit more satisfying, but sometimes art must reflect life and life isn’t always satisfying.

The Big One

  • Posted on March 25, 2011 at 1:06 PM

We were in the waiting area at the doctor’s office.  Ben needed a check-up before the doctor could sign the liability release form, which was required by the special horse-back riding center Ben and Alex are going to visit with their classmates.  While I’m rather doubtful that they’ll get either Alex or Ben on a horse…it’s important that the boys go.  It’s important that they try.

So, we were waiting.  A young man in a wheelchair who also had visible disabilities of the cognitive/developmental variety was also waiting.  Ben squirmed past him to scooch as close to the fish tanks as possible.  The young man smiled and laughed, gesturing at a fish in the tank.  Ben peered closely at another fish.  They shared the same space and the same interest and they were both fine with that.

Another little boy also occupied the waiting room.  He seemed quite normal: talkative, inquisitive, and sociable.  I watched Ben (while also giving him room to explore) from my place on the other side of the room to ensure he didn’t become a threat to the young man.  I overheard, from the other side of the room, the little boy’s mother answer a question in a not-quiet-enough voice, saying, “Well, there’s probably something wrong with his brain.”  I cringed.  The young man’s mother didn’t even flinch.  Maybe she didn’t hear.  Maybe she was so absorbed with her son that she didn’t listen.  Maybe she was so used to it she’d learned not to react.  Before I could come up with a response, Ben was off and so was I.

Later, after the young man had gone in to his appointment, the little boy came up to Ben and started talking to him.  While Ben will speak on occasion, he does not engage in these random social exchanges yet.  I told the little boy that Ben doesn’t talk much.  The little boy was rather disappointed.  He seemed to want someone to engage him—like entertainment, but with people.  And the little boy compared Ben to “the big one.” 

I suppose there are worse things he could have called the young man, but I couldn’t help but cringe again.  Maybe I’m reading too much into it, but it seemed a very inhuman way to refer to another person.

“The big one.”  Not “the big guy” or “the older boy” or even “the boy in the wheelchair.”  The little boy called the young man “the big one.”  So impersonal, so dehumanizing, so much like a thing instead of a person.

However busy Ben was being, I felt like this was a moment I couldn’t pass up.  So, I agreed that Ben was a lot like the young man—neither of them talked much, but they both had their own interests and they liked to play.  I told him Ben was autistic and that meant that he was still learning to talk.  I also prompted Ben to say, “Please let me go,” which is one of the phrases we’ve been working on and one I knew Ben would be motivated to say, since I pulled him away from the spinning circles he had racing each other for the few seconds it took to give him the prompt, have him speak, and then let him go.

Ben continued to play.  The little boy continued to ask questions.  I answered, building the concept of respecting people with differences slowly and subtly into our conversation.  Neither the little boy nor his mother seemed to understand what I was doing; they weren’t “against” it, but the idea of making “others” seem familiar and likable seemed foreign to them.

Behind me a mother sat with a boy who was too old to play with the preschool toys, but not quite as old as the young man.  This mother engaged in our little exchange, adding her own comments and observations to reinforce the subtle message I was trying to share with the little boy.  Her son didn’t participate directly, but his smiles and facial expressions seemed to indicate that he “got” it.

Then, the little boy was called to his appointment and the moment was over.  I don’t know if my efforts did any lasting good.  But I hope so.  For a moment, someone who was different was a person in this little boy’s eyes.  Ben didn’t talk, but he played and singed and liked things the little boy could understand.  All the while Ben played on, seemingly unaware.  Perhaps it’s a coincidence that Ben flashed a smile for the other mom sitting in the background.  But maybe not.  Ben doesn’t speak much, but he understands a lot more than most people give him credit for (and I suspect the young man does, too).  So, perhaps I taught my son a little about self-advocacy while reaching out to a little boy who needed a little help to see a person in someone who couldn’t talk like him.