Tag Archives: inequality

The Battle…

“It’s all well and good for higher functioning people who have autism to talk about how unique and precious their lives are and how important it is for everyone to accept their differences, but for families who are dealing with low functioning individuals, this is not their experience.   Those families are in an ongoing battle.”  

The above is a version of a comment I’ve read countless times over the years.

Aside from the curious conflation of the first part of the sentence discussing Autistic people’s sense of themselves, to the last part, which discusses the family’s point of view, as though the “low functioning” individual is incapable of having a point of view, there is no point arguing with anyone about their lived experience. However, do not make your experience mine.  This is NOT my experience of my child.  This is NOT my family’s experience.  This is not the experience of many, many families I know.  And do not assume this is my daughter’s experience either.  Just because this is the way you view your child or sibling or relative or the person you know, does not mean that is their experience of the world or their family member’s experience.

I do not assume that because I choose to celebrate my daughter, every family and every Autistic person will agree or feel the same.  Nothing is as simple as any one-word descriptor.  The ongoing battle I find myself in is with the inaccurate information about autism and Autistic people.  The ongoing battle is not my daughter’s neurology, it’s the misperceptions people have that they then apply to my daughter.  The ongoing battle is not about her at all, it’s about functioning labels, what people continue to say and believe autism means, how people view disability, the stigma attached and how people fear, reject and punish what they do not understand.

That quote?  That is exactly what I am battling – the idea that because someone cannot use spoken language, they do not have an experience of the world, the misconception that if someone cannot interact with another person in a way the majority of the population can understand or recognize, it means they are less than, unworthy, and therefore excluded.  Exclusion is the battle.  Non-acceptance is the battle.  Intolerance is the battle.  Hatred is the battle.  Prejudice is the battle.  Discrimination is the battle.  Misinformation, inequality, superiority, arrogance, ignorance, and all the ways in which people then behave because they believe these things and all the things they tell themselves that lead to any of the above being acted upon, that’s the battle.

USA-in-chains-610x400

Having to Prove Competence

I have always feared being put somewhere against my will.  Sequestered, hospitalized, institutionalized, these are abject fears I have had since I was very young.  The idea that others would have control over what I did, where I went, what I ate, who I saw…  these are more than just fears, they are like nightmares, too horrible to contemplate.  My greatest fear when I went to see a therapist in my early twenties was that I would be put away somewhere, so sure was I that if my secrets were revealed I would be thought too damaged to live among my peers.  I made my therapist promise that if I told him what was on my mind he would never allow me to be admitted to a mental hospital.  It was after he assured me, swore he would honor my requests that I was able to finally begin telling the truth.

On Homeland (the Showtime series beginning its second season) there is a scene with the main character being committed to a mental institution, forced to take medication, her speech garbled and slowed, her facial expressions a slow motion blur of terror, rage and pain, her eyes wild, like a caged animal, while her intelligence burns bright.  The well-meaning staff speak to her as though she were a child, incapable of reason, they tell her to calm down.  They tell her to take deep breaths and count to ten.  They doubt her ability to make decisions, they speak to her in voices cloaked in a calm-like veneer, their irritation still bleeds out, their condescension is palpable, their dislike for this person who is inconveniencing them is still vividly apparent.

And I thought of all the people we have met who are like those well-meaning nurses and staff.  They do not view those who are neurologically different as equals, not really.  They believe they have proof of this.  They do not believe, even though they may say otherwise, that people who cannot speak or who do so intermittently  are competent, capable of insightful thoughts, or have anything of importance to say.  They alternate between ignoring the person, to speaking to them as though they were still a toddler.  They are visibly uncomfortable.  These are the people who have concluded that because someone cannot verbalize what they think candidly and with ease, they must not have anything of importance to say.  Thankfully most of the people we meet who are like this have not devoted their lives to working with this population.

But now and then I meet someone who has.  They believe they are doing a good thing, a noble thing.  They believe they are helping.  They believe that the people they are trying to help are living happier lives as a result.  They believe this with all their heart.  They give words, as though gifts, in grammatically correct sentences, believing people can be trained to say things and do things that will be understood by the majority of the population.  They think that if they can force someone to stop moving their hands or legs or twirling bits of string that the person will be better for it.  They do not consider that this may be detrimental, that these actions are necessary to their concentration, that they will actually learn more and be able to concentrate better if they are allowed to do these things that are seen as unusual.

As I watched Claire Danes in the role of Carrie Mathison, I felt that old familiar terror  I used to feel when I imagined if people knew me they would believe I needed to be put away somewhere and locked up.  I was reminded of all my old fears that who and what I was, was broken and needed to be fixed and that I was not like others who seemed so pulled together, so calm and happy.  On the show, Homeland, the more Carrie tries to convince the staff that she is fine and calm, the more out of control she appears.  Having to prove oneself as competent is a difficult, if not impossible thing to accomplish, if those you are trying to prove to, already have made up their minds to disbelieve.

Em types with Pascal