Why I’m angry

I’ve read a few blog posts recently as well as some social media that indicates a vast majority of people still struggle with disability acceptance. These range from posts about the 25th anniversary of the signing of the Americans with Disabilities Act to one post about how awesome a certain Autism organization presents itself. Many of these posts make me angry.

You need to understand I’m not a “person with a disability.” You cannot separate the things that are different about me from my core characteristics. I am the sum of everything that has happened to me. All of my being is wrapped up in a tapestry that you can’t just pull a thread out of and it will still be a tapestry. Thus, I get angry at many posts I consider ignorant.

Let’s start with “disability” and what it means to me. Yep, I’m physically disabled. Got the doctor’s notes and everything. Does that mean I should be tossed aside as useless? I think not. I work a part-time job, volunteer and have an adult family to tend. I pay taxes. I give back to my community. I don’t consider those “worthless.”

I’m considered mentally disabled as well. As an Autistic, I face challenges others do not. However, I hold to the label of Asperger’s and not the newer “ASD” label. My main issues are with social cues, not intellectual difficulties. I’m apparently sarcastic and dry witted. Traits not appreciated by many. I’m frustrated by those who insist Autism  needs a cure. WTH! The last time people wanted to “cure” my type of disorder, several million people were sent to their deaths in gas chambers.

Yes, I’m angry. Autism $peaks has marketed itself to the point where people think it’s a “good” organization, much like the Susan Komen organization. Both are very public faces of diseases. Both have been shunned publicly by the very people they claim to serve. A$ does not speak for Autistics. They promote eugenics, physical and verbal abuse in addition to painting a picture of despair. Bottom line, you “light it up blue” and you are saying Autistics don’t deserve to exist.

There are so many places you can learn about Autism. Support locally to make sure your time and treasure actually help people and not just generate hype. There is no doubt that Autistics need your help. We need your help accepting our differences. We need your help funding respite care for families. We need your help to ensure families, regardless of economic means, have access to therapies. We need you to understand that different does not mean less.

Can you help?

1 thought on “Why I’m angry

  1. I have referred to my son as having Asperger’s which was his diagnosis in 2008 before it was absorbed into the ASD spectrum. In the past year I have started to refer to him being on the spectrum rather than specifically saying he has Asperger’s. I have done this to get the attention of the school district he attends as a way of saying to them, I’m not messing around here and you will help him and provide the services he needs. But it feels like I am being disingenuous when I refer to him as being autistic rather than having Asperger’s, it feels like it takes away from his particular needs and diagnosis but honestly before I did the school district tried very hard to brush off his diagnosis and provided very little help. I eventually sought the help of a parent advocate and entertained the notion of a lawyer who specializes in educational laws. I would prefer to tell people he has Asperger’s, it is a part of him and telling people he is on the Autism Spectrum doesn’t seem specific enough, they see a child who in most situations functions well enough until he doesn’t. In fact this is how I used to describe his Asperger’s to people, he’s perfectly typical until he’s not, when he is overwhelmed by certain stimuli, be it social or environmental. I don’t want him to be shortchanged but it bothers me that so many diagnoses have now been lumped together which doesn’t seem fair or right either. I have yet to reconcile myself to the decisions made by The American Psychiatric Society on the DSM-5.

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