Intelligent Lives: Attending a Screening

I went to a screening of Intelligent Lives in my area yesterday.  It's a documentary about people with intellectual disability (ID; ie: low IQ).   It touches on the overuse of the IQ test, but its main point is showing how people with intellectual disabilities are normally institutionalized, but don't need to be and shouldn't be. 

In the main, it follows three people with ID, and tells the finished story of a fourth.  I was pleasantly surprised to see that two of the three living subjects are dark-skinned.  The movie points out that black and brown people are twice as likely to receive ID diagnoses, so was quite appropriate. 

My opinion of IQ is known, but I'll summarize it quickly.  The Intelligent Quotient test was never meant to be a catch-all measure of a person's value or chances of success in life.  It was created to measure one thing: your ability to learn in a standardized school environment, with standard school subjects. 

This is good information to have, naturally, in a society where schooling is mostly verbal/textwall-y and also compulsory.  However, it's hardly the whole picture.  It's missing things like:

• how well you can sense others' emotions and motives.
• self-knowledge, recognizing your own reactions, motives, strengths, and weaknesses.
• your sense of musical pitch and rhythm (perfect or approximate pitch)
• how graceful or clumsy you are in team sports and other athletics
• your grasp of what is important in life, what life is about, why we live, and why we die.
• how well you can visualize things in 3D, move them in your head, and plan things out without ever touching or seeing them.

A person can excel in many of these things, but still have a low IQ.  And because of how much emphasis we place on IQ, that very intelligent person will be afforded few opportunities to use their natural talents.  They will generally be considered unable to make their own life choices, and set apart from their peers.  

Needless to say, I hope, this is both absurd and wrong.  

I attended this screening without knowing what kinds of people would be there, and how far along the community was in understanding things like "why self-determination is important," "the stress and frustration common to siblings of people with disabilities," and "the importance of including the voices of the people you're talking about in your discussions."  

I was pleasantly surprised, as the discussion afterwards seemed to have a good sense for the first two points.  The last, however, was entirely neglected.  While there were people with ID present, their voices were not asked for.  It was, in the end, a meeting of special education teachers and parents.  

I spent a good amount of time being rather uncomfortable about presuming to speak for people with intellectual disability, but opted to do so anyway, merely because no one else was going to.  I do not qualify, and never have qualified for the ID diagnosis.  What I do have is the knowledge that self-advocates are often excluded from these discussions, often out of sheer ignorance.  It simply doesn't occur to parents and teachers that adults with the condition would have anything to say.  

I'm afraid I couldn't muster the mental organization and politeness to address the room as a whole, and point out the obviously missing piece in the discussions.  I was running on very little sleep and had to skip dinner in order to attend the movie, which made me distrust my ability to make my point in an approachable fashion.  Honestly, I probably should have made the point anyway, but I was really super uncomfortable representing a group of people that I wasn't technically a part of and didn't have any immediate friends' thoughts to fall back on.  

I'll try to do better if I go to one of these things again.  I have a better sense of the community now, which will make me more confident in dealing with it.  Given how the people at my discussion table reacted to my comments on the subject, it seems like this particular message ("invite adults with ID to the discussion table, give them the microphone, and listen to them") needs to be heard.  Repeatedly.  If it takes an autistic self-advocate without an ID to make that heard, at least someone's going to do it.