Friday, March 14, 2014

Going For It

I've been wrangling a post around and around in my head practically since I (re)started blogging.  I have not been able to get it quite right and so I keep churning and not blogging.  It finally came to me (yes I am slow sometimes) that it is more important to be talking about this than it is to have the single perfect post on it.  (if such a thing were even possible) So here are my current thoughts – miss mashed as they are – to get started.  I expect I’ll revisit it a lot.

We as a society appear really, even monumentally, bad at respecting neuro cognitive diversity to me.  (I’m not even going to get into diversity in general – my brain totally spins out of control if I try to tackle something that large).  This is not a holier-than-thou rant.  I include myself in that assessment completely.  I've already called myself out on it publicly here once but I catch myself in it constantly.

One of the examples I am mulling most recently is The Arc campaign “A Life Like Yours.”  I need to say first that I applaud their intent to make the public aware of the lack of basic rights for those that are "different" and I totally support the campaign for additional SS waivers and more services / supports to make non institutional living more accessible.  What troubles me is subtle.  Both the assumption that all people want "A Life Like Yours" and the suggestion that to be equal the lives of those who are different need to be the same as everyone else's assume the superiority of the "normal".    i.e. the slogan for the campaign both separates us into two groups "us" and "them" and posits that “their” life both should look like “ours”.   I'm left wondering but what if they do not want "A Life Like Yours"?

Beyond the catch phrase the Arc does say “This is a human rights issue that unites us as one. It far surpasses color, race, religion or even social status. "  I love that part.  When I asked the adult FASD community what we should "call them"  I met with ... crickets.  (As I should have) And then one kind soul responded saying "I call us people."  I was humbled.  He was right.  what we may see as their differences ARE NORMAL for them.  So I love that this is being addressed as a human rights issue - not a "disability issue."  But I wish there were away to discuss this and promote the need for equality of opportunity, and the equal value of all persons, without the implied or outright stated message that everyone’s life must look the same to be of equal value/validity.  

I believe all people matter.  I passionately believe that this is a fundamental issue for our country. (and the world but hell who am I to be trying to take on the world)   “We hold these truths to be self-evident, that all men are created equal…”  Our very foundations as a nation are based on just this issue and yes civil rights groups are actively pursuing the rights of the neuro cognitively diverse.  However, we all continue to define people who are different as people who are dis-abled.  Disabled fundamentally means “limited in movements, senses, or activities in some manner” and this definition does not include limited by WHAT.  Looking at that – aren't we all disabled at some time for various reasons?  Disabled does not have to imply deficient or not having / being enough.  And yet, if you were to apply the word “disabled” to someone who does not consider themselves to be, they would protest, probably quite strenuously.  Disabled does not have to imply deficient or not having / being enough but in practice it almost always does. 

This is important to me personally  because my child and my brother are going to face discrimination due to their FASD all their lives.  With where they fall on the spectrum they will be judged both "not normal"  and sadly also "not disabled enough."  With an estimated 15% of the population of the US having some sort of disability the chances are good that most people know or love someone with some kind of "disability".  Even those that do know or love some one affected personally should care.  As Martin Niemoller said:

When the Nazis came for the communists,
I remained silent;
I was not a communist.

When they locked up the social democrats,
I remained silent;
I was not a social democrat.

When they came for the trade unionists,
I did not speak out;
I was not a trade unionist.

When they came for the Jews,
I remained silent;
I wasn't a Jew.

When they came for me,
there was no one left to speak out.

Equal rights for all matters.  I will be honest - I don’t know how we change the subtle (and not so subtle)  pervasive denigration of neuro cognitive difference.  I wish I had a solution I could trumpet from on high. (I do so love the moral high ground - its a failing of mine.)  I still wrestle daily with my own personal bias, trying to see the world from my son's  and brother's view and then struggling to accept that as every bit as valid as mine.  Some times I succeed sometimes I fail.  One thing I am sure of  if we are not talking about this topic, examining it, working on it,  then there’s no way we will change it.  


  1. For FASD? Brain damage. TBI. Both convey that the individual's brain is permanently, irrevocably damaged. Because that's what it is.

    The way I explain it is that my kid totally lost control, in a very scary way, for reasons I (and even he) was at a loss to explain. And I realized this was true, literally true, not in the way I'd originally meant it. My kid was out of control in the same way I am currently out of milk - it is gone. It's all used up. This boy has run out of control. He has a finite supply and it is just gone for now. If I don't like this, I need to be the one to change because right now he literally cannot help himself.

  2. Jenny - Thanks for your comment. I also use organic brain damage or TBI to help others understand and accept that FASD is a physical condition - and that a lot of times what they see as willful behavior or poor choices have nothing to do with choice. I think you are right on track saying they have "lost" control as in they cannot find a way to control themselves right now or are "out of" control because they have a finite supply.