Sunday, February 15, 2015

Disclosure, Dismissal and Ableism

"I don't believe you. You don't have that look"

The very first time my son decided to disclose he is autistic to someone he trusts and this was what was said to him.

Naturally, after he tells me this I am upset for him.
I am upset at the person for being dismissive.
I am upset at society for being so ableist.

I am no stranger to people being dismissive.
It's been a pattern my entire life. Phrases that have been commonly used:

"You're over reacting"
"I don't believe you"
"If you really were (insert some stereotype)"
"You're lying"
"No, you aren't"
"You coulda fooled me"
"I know someone who is __ and you're nothing like them"
"It's all in your head"
"You're crazy"


This it isn't limited to friends, family, or the average Joe... it has even come from professionals. It is not just limited to autism either, but almost everything I've ever disclosed.

I remember one time specifically when I disclosed my eating disorder to a psychologist. I had been recovering for about 3 months and had gained just enough weight to where my BMI no longer qualified me for an anorexia nervosa diagnosis according to the DSM IV (criteria is now different under DSM V). But, my mind was still sick and I was in a very fragile place.

This psychologist stood up looked over his desk at my body and said "No, you're not anorexic, what's your BMI, what's your weight?"  And he proceeded to pull out the DSM, to which I told him don't bother, I was recovering and was not about to engage in trigger talk. I then went out side had a panic attack and cried. Oh, did I mention he wasn't my psychologist but my son's (he was taking  family history). This was pretty much the nail in the coffin for disclosing my eating disorder... never tell the truth, because you won't be believed anyway.

Note: For those unfamiliar, you can't see an eating disorder because it's a mental illness, people can be clinically anorexic/bulimic/EDNOS and not be emaciated.

Trigger Warning: Brief mention of self harm in next paragraph skip to next red line text to avoid


Then there was another time where I told one of my friends (my only friend) I had been highly suicidal and how wrecked I was. She grabbed my hand, the same one that had  fresh 5 inch gash on it from an attempt (that was interrupted) and told me that my life wasn't that bad and that I just needed to get out of my head. But, how would she know? She didn't live my life.

End trigger warning

 
Then there was the time I told this same friend I thought I may be autistic, actually I said my husband thought I was. She said no you're not, you're probably just gifted. Truth: I was in gifted classes as a child, but that is not the same as being autistic AND you can be disabled and gifted at the same time (twice exceptional or 2E). I was sharing something I was rather excited about figuring out and she made me ashamed. It's even more disturbing because she has 2 disabled children. We are no longer friends, she dumped me for some reason I'll never know.

My parents were notorious for telling me I was over reacting. When I told my mom about my heart beating really fast and not being able to catch my breathe when I was 14, she said "Oh that's just a panic attack".. like it was nothing. I didn't see a doctor for it until I was an adult because it was "just anxiety"

I've been called a hypochondriac about many things (mostly sensory stuff) and basically called a liar when I try to explain how I experience the world.. because you know, everyone knows about my experiences better than I do. (sarcasm)

Almost every time I have decided to disclose something very personal and private to some one, I've been dismissed. 

I understand that the intention behind much of what people say is not to hurt others and that people say the things they say because we live in an ableist society. We are constantly fed messages that disability is shameful, to see the person not the disability (person first language), that the only disability in life is a bad attitude, etc etc etc...  

Image Description Text reads understanding why people do and
say these things does not help me.  
It does not prevent the damage that is caused
each and every time this happens to me.
Background looks like crumpled paper and is yellowish
But, understanding why people do and say these things does not help me. It does not prevent the damage that is caused each and every time this happens to me.

I am in a position right now where I really need to disclose I am autistic to someone. This someone is not likely to understand and will have questions. This person may ignorantly say offensive things due to stereotypes. 

I'm scared to disclose because honestly I don't know if I can handle any more dismissiveness. Each time I've been dismissed, it feeds my anxiety. So now the anxiety monster that lives in my closet has been so over fed that he has grown to immense proportions. He has me so scared and so ashamed.

And I'm pissed about it. 

I am pissed at those people who have dismissed me. I am pissed at those of you who cry "not like my child" "you don't have the real autism" "you're not disabled" because you are causing me and people just like me to feel shame when we try to self advocate. You keep us from feeling safe enough to ask for accommodations. 


You are hurting some of the most vulnerable people in our society.
"The true measure of any society can be found in how it treats it's most vulnerable members" ~Ghandi

There are many of you out there that even have the nerve to tell us we don't have a right to be angry about this. That we need to change our presentation in order to be treated with respect. No.Just.No

Here's the irony... Much of the time dismissal of disabled peoples' advocacy efforts are dressed up with pretty flowery words and good intentions. But, they still cause harm. Chew on that one. 


When disabled peoples' advocacy efforts are constantly dismissed,  our society is not treating us well, but rather tearing us down.

So what can you, one person, do to help?

You can start by listening and demanding others listen too.
 

You can start analyzing the things you say and thinking in a more critical manner, instead of resisting and becoming defensive when your own ableism is pointed out.

You will  learn to take the back seat and allow disabled people to be the leaders in advocacy efforts for disabled people. 


If you really want your children's futures to be a true success, you will demand things change.

4 comments:

  1. I understand, kinda. My first psychiatrist said I was ASD, but... I slowly realized how little he knew, and how incapable of being objective I'd been at the time. It's always been extremely hard to disclose that I believe I've been concussed, maybe more than once, especially since I've already been wrong. I feel sick now...

    ReplyDelete
  2. Thank you for putting into words the feelings I could never explain. We have a long way to go yet but the tide is changing. People are beginning to understand that they CAN'T begin to understand a disability they do not have. More than anything I want to stand tall and proud instead of hiding and being ashamed of the "real" me. I was told for most of my life to grow a thicker skin and to pull myself up by my boot straps and just carry on. Pretending to be "normal" is the most exhausting thing in the world. You are not alone. WE are not alone. The more of us that can stand strong in our "disability" and love ourselves as we are, gives others the example to live by for themselves and others. ((((hugs))))

    ReplyDelete
  3. OH, Kim, THANK YOU SO MUCH!

    Fifty plus years of being dismissed and tormented, even by the family of origin.
    It has taken a huge toll on my life.

    Also, being twice exceptional.

    I have more to say, yet need to process, before continuing.

    MANY BLESSINGS on your journey.

    ReplyDelete
  4. Thank you for putting this into words better than I can at this point.

    I, too, don't think I can handle any more dismissiveness. I was diagnosed with autism (Aspergers) 15 months ago at the age of 50. I regret having told just about everyone I did tell. One relative called me a liar, another who has an autistic grandson has not responded - basically ignoring what I said. One older couple who have known me almost 20 years said they pitied me. An acquaintance made an excuse for me by saying, "She means well" when someone got way over-the-top bent out of shape over a comment I made not allowing me to handle the weird situation. Another friend (subconsciously, I'm sure) began using shorter sentences and simple vocabulary as if he were talking to a child.

    I could go on, but you get the idea. And of course the dismissiveness has gone on all my life about everything. My feelings, my opinions, health concerns, everything. Not just from family, but friends, and professionals like attorneys and doctors. It's maddening. Reading this post is eerily right on time for me as I have been crying for two days realizing how much I have lost and how isolated I really am at this point. I am frightened.

    ReplyDelete