2/11/2014

Not Ill, Not Sick, Not Diseased

The history of how societies over the centuries have treated the mentally ill and the different is not a pretty one. In fact, it's a downright ugly one, one that rivals America's treatment of the indigenous people of this country and the Africans brought over in slavery.

In fact, the power structure of wealthy white men has much to be ashamed of. As Lily keeps noting as she reads her college history textbook, we were real douches. She's blunt with her language, much like her mama is. And given that's our one rule in the house--don't be a douche--she's well-acquainted with the concept.

Of course, I remind her WE weren't, but our ancestors were. I also note that we still have a long, long way to go to treating all people equally.

Minorities, women, people with disabilities...the list of people who are marginalized in this country is extensive. Government respects people with money, respects the power brokers, not the broken and powerless.

Even people who purport to support those who are disadvantaged are often revealed to be prejudiced and not as inclusive as they claim to be.

How are we supposed to change the world, bring equality, equal protection before the law, and true inclusion to all people if we, in fact, don't honestly believe all people should have a seat at the table?

We are well and truly screwed. The stakeholders in any discussion about a minority group are the members of that group. That has to be the bottom line.

We can be allies to the stakeholders, but when we take over the discussion and claim to understand them better than they understand themselves, we are arrogant and, let's be real, more than a little douchey.

We all have intersectionality--we belong to more than one group and we can experience prejudice and discrimination for different things at different times, or for multiple things at once.

Nowhere is this more evident than this Post by The Feminist Breeder (TFB) and the thousands of comments (plenty of comments have disappeared as various individuals have been banned, which is a shame, as it hides an important part of the exchanges).

The woman who writes as the feminist breeder has recently had her son diagnosed on the spectrum, which she wrote about on her closed website (you must pay to read), but a couple posts on her facebook page really activated autistic advocates to try to explain to TFB why her comments were hurtful to the autistic individuals.

You see, TFB wants a cure and to prevent future autistic individuals from existing--that's what prevention would mean. And that triggers a lot of autistic adults who've grown up being told they are broken and need to be fixed, people who see autism as an integral part of who they are, and who also believe that there are often tremendous assets to being autistic. They feel that cure and prevention is tantamount to eugenics and it scares the hell out of them, especially as Downs Syndrome fetuses are aborted at frightening levels (approaching 90 percent).

So what responsibility do parents of autistic children have to autistic adults we meet online? What role do we play in shaping how the world sees autism?

We all know how Autism Speaks and anti-vaccine groups have created tremendously damaging stereotypes of autistics and many of us stand against a perspective of autism as tragedy.

That doesn't mean we don't acknowledge the challenges in raising autistic children in a society that is not made for them nor particularly flexible or understanding. In fact, many of the problems we face as parents have more to do with society's reaction to autism than it does with our children.

Our schools, our stores, almost everywhere we take our children is set up to be at the very least unpleasant. Harsh fluorescents, crowds, loud noises, you name it. It doesn't help.

We learn ways around that when we can, but sometimes there are things we can't alter and that leaves us struggling and our children struggling. Some autistics react aggressively to their environment, lashing out.

Wouldn't you lash out, too, if your environment was overwhelming you, if you were having demands made on you that are out of your ability to understand or do, or that you find painful?

Wouldn't you lash out if time after time you patiently tried to explain how you perceive the world only to be dismissed by experts and parents who think they understand autism better than you, who are living it, do?

How would you feel if you heard constantly that who you were, your very identity, was ill, sick, and diseased and something to be eradicated?


Understanding where people are coming from, understanding when our language is threatening, is really important.

I know how my children's autism affects me as a parent. I am not the expert on living with autism, though. My children are. And each of them has a different experience, because their autism impacts them differently.
My Lily and I are the most similar, and I can see my BAPpiness best in her--we relate to each other, see the world in very much the same way, and so I could, with some confidence, say I understand where she's coming from in many ways. However, her autism also creates differences between the way our brains work. We are similar but not the same. She clearly has issues that rise to the level of being disabling in this society, whereas I am able to get by easier--I am not disabled by my BAPpiness. Uncomfortable in some situations, too obviously literal in my thinking at times, but I can and do navigate the social and work environments successfully without the need of assistance.

So, even though I have glimpses, it would be arrogant of me to think I understand what it means to be autistic.

My brother has mental health issues and drug addiction issues. I can talk about what it's like to be his sister. I can't speak for what it's like to be him.

What I can talk about from the inside out is anxiety disorder and depression. My family can talk about what it's like to be on the outside, how my issues affect them.

To pretend we are experts on experiences we have not had is arrogant. We have an obligation, if we really believe in respect and equality, to listen to those living the experience. They know it from the inside out. If they tell us our language is harmful, we should listen and take care with our rhetoric.

I have three kids on the spectrum.  I can talk about what it's like to parent them, but I cannot talk about what it's like to be autistic.  I can talk about their behaviors, but I cannot talk about what their interior reality is like. I can extrapolate, but I could be horribly wrong, so if I really want to know, I have to ask them. And then I have to listen to them.

I cannot and will not treat them like their autism renders them ill, sick or diseased. Their brains are wired differently. They experience the world differently, and it is only by respecting their experiences and listening to them that I can help build a world they can fit into.

How can I do any differently for them or any one else struggling to find his or her place in the world today?

4 comments:

LindaWarren said...

This is such a beautifully written essay, but it has tugged at my heart strings for the wrong reasons. I have been the person that a parent with a child with autism fears, because I was afraid. I didn't listen. I felt entitled to assign blame. How arrogant I was. I remember being in the store and seeing a mother struggle with a child whose behavior was abhorrent and uncontrollable. I was judgmental. The child was autistic. Your essays are so valuable, Mrs. Wombles, because it allows those of us who NEED to see them, a chance to do so. I sometimes forget how people used to treat my child who had cystic fibrosis. I sometimes slip back into that "old me" who thinks a parent is failing when their child exhibits something other than perfect manners. I'm ashamed that I wore those shoes. Thank you for opening my eyes again. Now I need to learn to listen.

Dixie Redmond said...

Beautifully written. Not much in life can be tied up in neat little bows.

Sharon Morris said...

I think the fact her child had only been diagnosed 7 days prior needs to be taken into account. Few parents are in a good frame of mind re. autism immediately after diagnosis.
Also, I didn't see many people being patient, I saw lots of attacking. She was defensive as a result. People can't listen well when their defences are up.

K Wombles said...

Thank you, Linda and Dixie.

Sharon, do you honestly think this piece is primarily about TFB and criticizing her?

"Understanding where people are coming from, understanding when our language is threatening, is really important." Seems a lot of people involved in that thread failed in that.

Her defensiveness is understandable, but so is the defensiveness of the anti-vaccine crowd, but few people on the neurodiverse side are interested in their emotional state.

Why are some people's emotional states more deserving of understanding?