Friday, October 16, 2015

Thoughts on Independence.

"Thank you so much for asking me!" This was the earnest reply of a friend whom I had asked for help a number of years ago.

Asking for help didn't (and still doesn't) come easily for me. My mother was a strong woman who raised five children on her own. She often could have used help but rarely asked for it. She knew how to live on next to nothing and modeled it throughout my childhood. And when she did ask for help, because food and electricity aren't free and winter makes no concessions for poverty, I think it probably shamed her. She was born just after the Great Depression, the product of mid-western baptist farmers  -- a proud sort of people. They were all the product of the "Pull yourself up by the bootstraps" American ethos. My mother taught us, as her parents taught her, that one must never let others know about our failures, our weaknesses or struggles. I can see why she believed that and why asking for help then brought her shame. Laying your weaknesses out for the world to see leaves you vulnerable and open to criticism and that can be frightening. I'm sure she would have been mortified by this blog, making a private journey public. But from where I sit, toughing it out can sometimes require less bravery than putting your vulnerabilities on display and demanding acceptance. It takes a lot of courage to not be ashamed about needing help in a society that prizes independence, mistakenly conflating it with an individual's worth.

But my friend's remark was genuine that day. I can still hear how she said it, as though I was honoring her by asking her for help. In that simple sentence, she taught me a truth that I've been unraveling ever since. And in the unraveling, I've come to question assumptions about independence that I didn't even know I had.

For instance, independence in communication is always a goal for people who type, but I think it is imperative to reflect on why this is the case and the value we place on it.

Should Oliver work towards independence so he won't have to rely on another person for help to express himself? Well, yes. But there are other reasons for focusing on independence that are a little less benign.

First, there is the issue of public perception. Sadly, I've recently come face to face with the fact that if one learns to type through facilitated communication methodology, there will always be some questions of authorship. In our experience, these questions (accusations) come from people who have never met Oliver. People who have never bothered to read more than a few slanted studies, have never bothered to try and understand why there might be truth on two sides of an issue and ask why that matters. Instead, users of facilitated communication like my son are dismissed as another sad case of a person being utterly manipulated by his caregivers. A human Ouji board. ... Don't get me started!

Truthfully though, I'm glad that people are asking the questions of authorship and validity. When a vulnerable person is communicating something, it is right and good to always look at the circumstances and ask if the person is genuinely and freely communicating his or her thoughts. I always want there to be safeguards in place for this, to protect Oliver. All of his facilitators (he has six of them) are taught how to build these safeguards into their work together.  Influence can and does happen. And the layers of influence can be complicated and not immediately obvious. Just as they are when I hear his brother Sami, who was born with the gift of gab, say something that I know is influenced by something I've said to him. Truthfully, I am more worried about this kind of influence than I am about someone moving Oliver's hand to type something not reflective of his own thoughts. Because of our long ago history with ABA and the violating use of full-physical prompts, Oliver knows that it is never OK for someone to force him to do something he doesn't want to do. He's not a toddler anymore and he's stubborn like his mother and his grandmother.

It strikes me as so absurd that the general public finds it acceptable, even considers it best practice, to physically move a person to complete the desired action (compelling a person forward) and call it a teaching strategy while also being completely against using physical touch to provide backward resistance (pulling away from the target action) in communication. To me, this is reflective of general attitudes towards the intelligence of non speaking people.

When the ABA therapists forced Oliver's hand to retrieve the icon from his visual schedule, despite his very vehement objections, it was because they didn't think he understood what they were asking him to do.

When Oliver first learned to type and required backward resistance, I lent him my hand because I knew he could do it and understood that he needed support, that is, touch to help him anchor his body in space.

So, while I do hope Oliver will someday be completely independent in his typing, I'm less and less inclined to push for it based, even in part, on my desire for him to be believed unequivocally. I don't want to lay that burden on my hard-working boy. Oliver, and many of those who type, know these are the stakes and the emotional toll can be very heavy. He feels that he needs to prove himself every time he sits down to type.  It is wrong to complicate his struggles based on the prejudicial perceptions of others. Pushing for acceptance is the better fight.

And finally, I think it is important to examine our deeply held belief that independence, in all things, is the pinnacle of achievement. When Oliver was diagnosed with autism he was just three years old and among my first concerns was: Will he ever be able to be independent? This is still a concern but not because I think there is anything wrong with being dependent on others. After all, who among us is really independent? Most of us are just able and privileged enough to put supports in place to mask the fact that being part of society makes us inter-dependent. And, having parented Oliver now for 13 years, and having recently cared for my very strong minded mother before she died, I've come to believe that caring for others elevates our lives and lets us tap into what it means to be human on a very deep level. This was the lesson in my friend's gratitude. My son is part of the fabric that connects us to each other as humans. That's no small thing. My concern over his dependence on others is rather due to his vulnerability and my fear that in this world where independence is paramount, the prejudicial cards are stacked against him.

In the end, I've come to think of independence as a kind of phantom pursuit. I don't really know what it means anymore or why it is seen as such an important goal. Where would we be if we didn't need one another? What a less full and textured life we would all lead! I think in many cases the desire for independence is fear-based and that isn't a healthy way for me to approach goal-setting. I want Oliver to know that it is always OK to ask for help and rather than diminishing his value it elevates us all if we let it.

No comments:

Post a Comment