Sunday, September 13, 2015

Thinking about Self-Determination

One of my typing friends has been "stuck" on the topic of independence.  He repeatedly requests that I help him be more independent.  Usually this leads me to offering a few practice exercises in typing simple words or phrases with less and less physical support on my part.  And almost invariably, he begins to resist after just a few minutes. Just for the record, I am using one particular typer as an example here, but the pattern happens all too often with others as well.  They ALL want to be "independent" but don't seem to want to work at it.   So I make the assumption that we are somehow failing to communicate, and begin to ask for clarification.  "If it isn't typing that you have in mind, what is it?"  Answers vary.  "HELP ME LIVE ON MY OWN," "GET ME OUT OF MY AUTISM," "FIND ME A NEW BODY," etc.

With this particular friend, a man in his 30's who does not speak at all and needs almost total support in every aspect of daily living, I pushed for even more.  And what it seems to come down to is that he understands he will always need the help of others,  but he wants these helpers to respect his inner intelligence, and give him more options in his life, more personal control over all matters large and small.

We were talking at the time about simple things like more choices for what to eat for breakfast (NOT SO MANY PANCAKES) and what to do with his time (I LIKE TO DO DIFFERENT THINGS), but there are so many other matters of concern and  so many others like him whose desires aren't being recognized or respected.

I am thinking of another young man I know, still in school, and also using typing as his primary means of communication.  After establishing himself as an honor student using a combination of Facilitated Communication and Rapid Prompting Method, he was accepted as a high school senior to take a college level course through a neighboring college.  At the last minute, however, the powers that be decided he would not be eligible because he uses a method of communication that is not "evidence-based."  He is not the only young person I know who has expressed a strong desire to get an education, only to be turned down once someone up the chain of command realizes that this unique method of sharing knowledge (when you can't speak or write) is being used.

Moving from choices about what to eat to what to do for free-time activities to what to do after leaving high school, things can get even more critical to true self-determination.  Two major stories in the news right now  bring this matter front and center.

In the state of Colorado, Sharisa Kochmeister has been removed from her home and is living in the care of someone other than her family.  Hers is a long story and I won't even try to tell it here.  But essentially what has happened is that she now finds herself with no access to the only means of communication that has worked for her, and is unable to let people know what SHE wants when it comes to the all-important decision of where (and with whom) to live. Read more here:

In the state of New Jersey, a young man with Cerebral Palsy has likewise been denied access to his chosen means of communication while a jury meets to decide if his female facilitator took advantage of him and is in fact a sexual predator. This case has been going on for four years now, and he has not been given an opportunity to tell his side of the story, nor has he had a chance to express his wishes for his present, or future, life choices.  Does he not have the right to fall in love, to have an intimate relationship, to choose where (and with whom) he lives?  Most of all, does he not have the right to have access to a means of communication that works for him?

When we make choices for others, whether it be cereal versus pancakes or where they will live; or we make judgments about whether they are capable of doing college work, or capable of falling in love, we are not presuming competence and are, in fact, sending a strong message either that they don't have preferences, or their preferences don't matter.  We are missing a perfect opportunity to show them that we recognize their value as a person, with feelings and desires just like everyone else.

If we fail to recognize and appreciate the inner value of the people we know who are unable to speak, we risk falling into a scenario reminiscent of this one in the movie "Awakenings"

Standing there, watching these human beings on the screen, unable to move or communicate, Dr. Sayer asks: “What’s it like to be them? What are they thinking?”
“They’re not.” The expert retorts, “The virus didn’t spare their higher faculties.”
Disturbed, Dr. Sayer challenges. “We know that for a fact?”
The expert’s response is once again direct and affirmative, but Dr. Sayer continues to challenge: “Because?”
To which the expert responds, devastatingly: “Because the alternative is unthinkable.