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Nothing About Us Without Us: A Presentation

  • Posted on March 17, 2014 at 9:39 AM

Independence: Part 3

  • Posted on July 19, 2011 at 2:14 PM

American culture prioritizes self-sufficiency—one form of independence—when assessing human value, and by doing so our culture denies both the belief in equality and the importance of self-determination. I suspect this switch has a lot to do on the American eugenics program, but I’m not going to dwell on that. For now, distinguishing between self-sufficiency and self-determination is enough. Both are aspects of independence, but their place in our society has flipped in significance.

So, where does that leave us? What will independence look like for my family as my children grow up?

In order to try to project that I first have to consider what independence looks like for my family now. Will is the most independent of my three autistic children. At the age of twelve, he can do many things his peers can do. Alex needs a lot of assistance. While he’s becoming more self-sufficient in matters that do not involve communication, he difficulty communicating is still a significant barrier to independence. Ben is, as usual, somewhere in-between. In some ways, he’s very much the “little brother,” and is thus not self-sufficient. But his communication skills have out-paced Alex (he’s no longer considered non-verbal) and his get-into-trouble skills show a great deal of self-sufficient stubbornness, if not a great deal of compliance and understanding. (Why, oh, why must he play with my hand towels!?!)

Looking at the boys, however, is insufficient to properly project their levels of independence in the future. Mark and I are big factors in this. We are both capable of living independently, if it were just ourselves we had to care for. We don’t need personal care workers to meet our personal needs. Yet, I would not consider us self-sufficient. Of course, the money thing is an issue, because we’ve chosen to prioritize our children’s needs over the high-paying, 100-hour-a-week marketing jobs I am otherwise qualified for and because we don’t have the typical dual-income many American families have, we tend to run short on liquid funds when something big happens. More than that, we also need help meeting our children’s needs. We tend to have, between ourselves and among others, inter-dependent relationships.

So, if we wanted our children to live independent—meaning self-sufficient—lives, we’d have to become better examples of self-sufficiency ourselves. On the other hand, both my husband and I are examples of self-determination. I expect Willy will grow up to lead a life that is both acceptably self-sufficient (by society’s standards) and self-determined. Ben may need more assistance than is socially acceptable to be self-sufficient, but he will be self-determined. It’s Alex I worry about. Without an effective means of communication, his self-determination is at risk and so is his self-sufficiency.

It may not be the priority of our culture, but I am personally more concerned with empowering my children to be self-determined.


Independence: Part 2

  • Posted on July 17, 2011 at 4:07 AM

So, what does independence really mean? What is its significance in American culture?

Independence is “freedom from the control, influence, support, aid, or the like, of others.” In American history, independence was primarily a political matter. As a fledgling nation, we wanted independence from the control and taxation of the British Empire. I support this kind of independence. In our Constitution, we have also ensured another kind of independence: Independence from the government, which is manifest in the freedom to speak openly, to organize, to arm oneself, and—all together—the freedom of self-determination. All these are good things.

But I can’t help but think our obsession with independence is a bit misguided. Sure, independent thought and free-will, with minimal governmental obstruction, are foundations of this nation—which I wholly support. But our obsession with independence has gone far beyond that, while at the same time neglecting the basic tenets of our founding beliefs. We focus less on self-determination and more focus on self-sufficiency. The less self-sufficient you are, the less valued you are, and the less respected your legal rights become.

I could write a political post about how government encroaches on independent thought and free-will, and how as a democratic republic we should actively resist. But that’s not the focus of this blog and my past side-steps into politics on this venue haven’t gone so well. Besides, I’m more concerned about the ways we distract ourselves with assumptions of human value based on a person’s independent living status. As if whether or not you can hold down a job, button up your coat, or drive a car are the true indicators of your human worth—rather than a belief that we’ve all been endowed with unalienable rights and we are all created equal.

I’ve been told that this focus on independent living is rooted in our colonial history. If people weren’t independent, they didn’t survive. But is that really true? Granted, I’m a bit removed from colonial days, but as I understand it neighbors actually helped each other back then. That doesn’t sound very independent to me. You need a barn built? Sure, you could take weeks or months and do it yourself. Maybe you could, depending on your access to assistive technologies, such as winches and levers. Or you could pass the word along to your neighbors and get a bunch of people together and get the barn built in a day. Which do you think they did? I’m sure some people made rudimentary barns and houses without help, but when help was available they used it. Why? Because life is better when you can and do get the help you need, whether it’s from technology, other people, or both

I believe in independence. I believe people should be empowered to do the things they can do, and that often means providing them with technologies and education to get them to a point of actionable power. Then, once they reach the point of success, it means stepping back and letting them do it. But, before you get to that point of success, you do need help. You need to learn, you need tools, and you need people to help you. That’s true whether you have a disability or not.

Ah, but the difference is some people, when given the tools and assistance they need, can become more independent then others! Really? How much of that is genuine potential, or lack thereof, and how much of that is appropriateness of tools and education? We assume some people are more able—or have more potential for “ableness”—than others. Yet, as a culture, we resist providing those who are deemed less able with appropriate technological and educational adaptations. How can we really know what people are capable of if we only provide a certain set of standardized tools and we only provide those to the people we think can use them? Does that reflect a belief in independence or a belief in standardization?