Saturday, January 4, 2014

Return to Sender

Houston we have a problem! 

 "Are disability advocates working together WITH parents to create change for people and children with disabilities? Recently, I've found many examples of disability advocates using their voice to promote a self-narcissistic view of their disability, while ridiculing parents and accusing them of neglect and abuse." 
 "The discrimination and bigotry against parents must stop if we want people with disabilities to be respected and regarded as a resource and vessel for change."

First issue : Tone Policing 

I’ve been in this community for quite a long while and statements like the one above are not uncommon. It resonates from the general direction of parents raising autistic kids who simply do not like to be told they are wrong. These are parents who are not disabled, have no idea what it’s like to be autistic and typically are looking to "make normal" or "cure" their children. 
I have been on the receiving end of such a message, many times. 

In fact, I was on the receiving end of it enough that I began to believe they were right and I was doing this advocacy thing all wrong. I've been told “You make me feel guilty” more times than I can count. I have heard I needed to show more respect, because, you know, I haven’t walked in their shoes. (which is funny because I am a parent to an autistic child too)
I decided to work on changing my approach, thinking that maybe the problem WAS me. Maybe, I was not being heard or accepted because I was simply too harsh. Maybe I did come across as attacking, bigoted and even narcissistic. Maybe I was simply too rude and insensitive to be heard. Maybe, JUST maybe, they knew something I did not. 

I really wanted to help other people and I was desperate to have them listen to me, for their kid's sake.
I did everything I could to nurture the parents before moving on to the real issues, which by the way takes a lot of mental energy to do.. It didn't really change much, What ended up happening was they would take the  sympathy I offered, and leave the real message I was attempting to send behind. Or they would take my sympathy and tell me the rest of the message I was sending:
Made them feel guilty.
I was still being told I was rude, cold, and insensitive
I was being disrespectful.
I was being too critical.
Even though I had changed my approach the same message was still being sent:
“I don’t have to listen to you because you make me feel guilty. Your concerns are invalid. I don’t like being told that maybe I am wrong. I am the parent, the nondisabled person and I know what’s best for disabled people. I matter more, so sit down and shut up.”
So, the problem was not me or my approach, it was their “it’s all about me” complex. It didn’t matter what box I packed and delivered my message in, these people were going to write “Return to Sender” on it every.single.time.  I was dealing with martyrs and pity parties, and I was crashing their party. 

They never wanted my perspective, solutions, or respect… they wanted me to be compliant, They wanted me to just shut up.
Image Description:
 Cardboard Box taped shut. Stamped on the box are the words Fail, Return to sender, Rejected and Damaged

Second Issue: Claims of bigotry and discrimination 

Let’s get something out of the way here.
Q: Are autistic people capable of bigotry and discrimination?
A: Well, yes of course, all humans are capable of this.
But, the context that surrounds these claims does not dictate discrimination and bigotry. Speaking up for yourself, asking for respect and demanding equality are not forms of discrimination. Pointing out harmful methods or patterns of behaviors in which parents engage with their autistic children is not bigotry or hate.
More times than not, claims that parents are being bullied by autistic adults are sent out because parents are simply uncomfortable with the facts. Autistic adults in these scenarios refuse to subscribe to the status quo (or status woe as some have coined it).  This often leads to parents claiming they are being bullied. 
Parents and nonautistic people fail to understand that autistic people have long been on the receiving end of hateful rhetoric and silencing of their voices in what is supposed to be their very own civil rights movement.

Imagine your whole life being surrounded by people who silence your voice and invalidate your concerns. Suppose you were forced to live in a world where you had to listen to how devastating it is that you even exist because you are just so “puzzling” and extremely hard to loveCan you even begin to fathom how it feels to constantly stifle your emotions, feelings and words because “it’s just not fair" and your thoughts and feelings "make others guilty.” 
What if you had to exist in a world that believes in compassion towards murderers, attempted murderers, and abusers of people ? This world even goes as far to say that these acts against your humanity are justifiable because they couldn't put enough “pieces” together… walk in their shoes why don’t ya? (forget about your shoes, you don’t even OWN a pair). 

So, if you had to live  in a world where your very being was considered a burden and you were viewed less than human, you’d be a little pissy from time to time too.

The autistic community, which includes autistic parents, autistic adults without children and their allies engage in these hard to have conversations because we care. There is no agenda, other than to help make the world a safe place for all autistic people to exist.

Sometimes the package our message is delivered in may not be very appealing to some. But if you take time to open it up,you'll discover some pretty awesome stuff inside.

Image Description: Opened cardboard box
inside of it to the left are 3 cartoon hearts
In the middle is another box brightly wrapped in red paper with a yellow bow
To the right is a cartoon bouquet of flowers
Text at the top reads :Surprise in big red text


  1. Kim, I respect your message and have learned so much from you over the past few years. Thank you for telling it like it is, and sharing your story. You have a perspective I don't have and I appreciate your point of view!

    1. <3 thank you for allowing me to share your journey.

  2. Kim, this is a spectacular post and such an important message!

  3. Peggy Winkel…It is so good to read about parents who are growing and learning through parenting autistic children! Thank you so much!
    This is how it might end with those who are stuck in defensiveness: My mother was disappointed because I was not like her. She was disappointed because she thought I was "too smart" (to buy into her stuff). Everything was a game she needed to win over me so she created deficits out of my assets. All of it was out of her unhealed insecurities and narcissism. And it did hurt me a lot, made my life more difficult and confusing and required a great deal of energy that I should have had available to make my own way instead of dealing with what she thought, which was mostly fantasy based on who knows what. Autism saved me from being completely gutted, even though my diagnosis had been long forgotten for the most part. Parents of autistic children can be their own worst enemies and a hindrance, which creates a lot of pain and suffering and blocks what they think they want. Narcissists are excellent projectors so just expect to be attacked by them whenever any sense that they are not perfect is triggered. I am pretty sure it is far worse to be a narcissist than to be around a narcissist, and that is saying a lot. I don' t know how to work with them at all. Wish I did. There was a time when my mother was the stars and moon and I was totally in love with her. Very, very long ago. And it hurts. She is almost 91 and in the hospital with little pelvic fractures, and I can't let myself be near her…for a five hour drive I would otherwise possibly say goodbye.