Why It's Still Okay to Hate People with Disabilities

I want you to read this.

I want you to read these words and see what living in this world is like not for individuals with disabilities, but for everyone else. I want you to see how your world shapes you over time, in subtle and overt ways, to see us.

The comments above were found on a post of a customer service stories website, in response to a story about a grocery store bagger with Down's syndrome. What shocked me wasn't that someone would so openly admit to hating and fearing individuals with disabilities, but that there was another comment below it echoing similar sentiments (not pictured). Had these commenters said that they hate black people, or gay people, and believe they should be wiped out, there would have been tremendous outrage. But threats to the lives of disabled people are met with barely a shrug.

It is comments like these that enable people to feel this way: One person voices their thoughts, and it empowers the many who are silent to speak up in agreement. Initial hesitation disappears in the face of validation, and soon these voices grow louder, bolder, united in their common fear of anyone who is not like them. Their voices become a roar, eyes large and furious, teeth gnashing, forcing their way into the minds and hearts of those who live with disabilities.

As a young autistic girl, the only thing that made life more difficult than thinking my peers hated me was how I hated myself. No one had to tell me that all disabled people should be wiped out; I came to believe it myself, with thoughts of suicide beginning when I was in the fourth grade. For years, I eschewed the label of "autism" and clung desperately to Asperger's Syndrome, believing it somehow made me better than those who were more affected, more "obvious." I didn't want to be perceived the way I knew they were: As being stupid, retarded, deficient.

Hopeless.

I know now that my feelings were borne not out of hatred, but from incredible self-loathing. I have confronted the prejudices that I never intended to have and overcome them. Obvious or not, "high functioning" or not, we are all the same in the eyes of those who feel as these commenters do. They make assertions about who we are, what we love, how we live, the very core of our souls based on the category they place us into: "Acceptably" (not visibly) and "unacceptably" (visibly) disabled.

I want you to read these words.

I want you to decide if they sound like something you've ever thought, or said when you thought no one who would care was around. I want you to think about disabled children and adults who have suffered and continue to suffer because these attitudes are held by people in positions of power. I want you to understand that our pain is not the price for your comfort.

You can ignore your prejudices and the damage they cause, or you can face them and try to make a change for the better, both for yourself, and for individuals with disabilities all over the world.

Which do you choose?

Vexed by Vaxxed: Autism, Vaccines, and the Epidemic of Ignorance

It's only a few days into 2016's Autism Awareness/Autism Acceptance Month, and despite how much progress has been made over the past year, I have already come face-to-face with evidence of how much work still needs to be done.

As most folks probably know by now, the controversial documentary Vaxxed! was slated to be screened at the Tribeca Film Festival later this month, at the behest of the festival's founder, Robert De Niro, who is a parent of a teenage son on the autism spectrum. Shortly after defending his decision to screen the film, De Niro announced that Vaxxed! would not be shown at the festival after all, saying that he had reviewed it with experts in the medical community and that "[...]we do not believe it contributes to or furthers the discussion I had hoped for."

The film, which was directed by discredited researcher and anti-vaccine progenitor Andrew Wakefield, has provoked an incredible backlash--first from the scientific and autism community when it was going to be shown at Tribeca, and then backlash from the anti-vaccine movement when it wasn't. Yet the comments and attitudes of those who are anti-vaccine have proven for me to be some of the most disturbing and misinformed that I have witnessed.

This culminated in my seeing a Facebook post from Vaxxed! producer Del Bigtree (how is that even a real name?) and a response to a comment on that post, which I have screencapped below:

(Source: Del Bigtree Facebook post)

When you create a narrative of autism that centers almost entirely around young children, this is the result.

When you promote an agenda that says autism is caused by vaccines, that ignores the presence of autism throughout history, insisting it is something new that didn't exist twenty, thirty, forty years ago so therefore only affects children, this is the result.

Adults with autism are right where we've always been: Here, among you, living our lives to the best of our ability, trying to survive in a world that neither understands nor accepts us.

We are here now as much as we were in times past; the only difference is that twenty, thirty, forty years ago, you didn't see us. You couldn't, because we lived in institutions, placed there by our families who were told to lock us away, forget about us, and move on with their lives. Autism was "childhood schizophrenia," mental retardation, "manic depression,"...every diagnosis but what autism actually is, because for so many years, it was neither understood nor widely recognized.

So we suffered in silence. Alone. But we were there.

Today, knowledge of autism is greater than ever before. It has entered and become affixed to the popular global consciousness, and specialists and providers trained in the assessment and treatment of autism spectrum disorders are in overwhelming demand.

But autistic children do not exist in a vacuum. They will grow up, age out, have different needs and challenges as they get older, for which society remains woefully unprepared. Yet the single greatest resource for helping these children is still the most untapped one:

Autistic adults. We who offer both caution and hope, because we know firsthand what it means to navigate the perils and pitfalls of being autistic in a neurotypical world.

It often seems that becoming an adult with autism is never presented as an option to children of anti-vaccine parents, and it is these children for whom I feel the greatest sympathy. Children who hear themselves described as "vaccine-injured" or "vaccine-damaged."  Children who hear these sentiments over and over again, and who start to see themselves as exactly that:

Broken. Less. A toy in need of a factory reset.

But individuals with autism are not objects; we are human beings with personalities, passions, strengths, and challenges that are both tied to and so much more than our neurology.

It is this viewpoint that I would like to see represented at events like the Tribeca Film Festival and other Autism Awareness/Acceptance month celebrations. We must recognize and prioritize common sense and rational thought, rather than fear-mongering and hysteria-based rhetoric.

I want anti-vax parents to stop searching for the 'normal' child they think is missing and start looking at the autistic child that is right in front of them.

It begins with education. It begins with denying a platform to those whose words and ideas would promote ignorance and ultimately cause harm individuals with autism and their loved ones. It begins with raising the voices of those who are working to affect positive change, those with stories to tell and wisdom to dispense.

Change your own perceptions of autism, of what it means to be autistic, of what the possibilities for autistic children are, and of what we can do to ensure a better quality of life for all individuals with autism.

It begins with you. It begins today.

"I'm Not A Model."

I sometimes hear myself saying this, usually in the following context: “I look pretty good today. I’m not a model, but…” And I’m realizing how much it bothers me, that that phrase has become some sort of qualifier.

“I’m not a model.”

Most women aren’t. We aren’t models…we’re us, yet somehow the barometer by which we measure our self-worth, our “good hair” days or “good skin” days or “skinny” vs. “fat” days or whether our butts and breasts are appropriately perky…is models.

I don’t just mean the comparing and contrasting that goes on when you read a magazine (such as Cosmopolitan). That’s an active form of comparing, where you’re consciously processing this printed material and aligning next to your own perceived misshapen bulk.

I’m talking about the unconscious comparing, such as I described above. Deciding, without even realizing it, that the absolute best, #1, top-of-the-line you can be is a model or model-like.

“I’m not a model.”

Today was the day I had an epiphany regarding that phrase. Today I realized how utterly absurd it is, in any and every context. I’m not 5’11”, nor will I ever be. I’m not gonna be struttin’ down a catwalk anytime soon, or gracing the front covers of any publications, nor will I probably ever.

So instead of making models my barometer…instead of saying, “Well, I came thisclose to model hot today,” I need to say, “I was a pretty good Me today. Not my best Me, but good. And tomorrow, I’ll try to be an even better Me.”

Because here’s the thing: Even on my very worst days—the days that eat away at me, the days that wrench my insides, the days I want to be over before they start—I still want to be me. If I was a model on my worst days, I could never appreciate or be happy with being me on my best days. So that’s why I have to be me, 24 hours a day, seven days a week, 365 days a year.

I may not always like it. Nobody looks in the mirror and loves what they see all the time, unless you’re Narcissus. That’s just the way the world works. But I can no longer get down on myself for not being or looking a certain way. I spent too many years doing that already, and it’s no way to live.

It’s not living at all, really…it’s existing just for the hope that you someday might escape who you are.

Except I don’t want to escape who I am. Not anymore.

“I’m not a model.”

…But why should I have to be?

You Are So Beautiful to...Whom?

Yesterday, I read something online that said, "Repost this if you honestly believe or have ever been told that you are ugly.” I was able to see how many reposts it had received, and the number was almost shocking-—well past a million. After reading it, I realized I had a lot to say on the subject, which is why I am writing this.
His name was Tommy. I remember his shaved head. Even when the campus was bustling—after classes let out, as everyone ran to find their bus home—I could spot him from afar.
He followed me around, calling me “Ugly Amy”—over and over, from the moment I set foot outside the building right up until I got on the bus…and sometimes he followed me onto there, too.
Being called ugly while standing outside the school was often the cap to a long day of being called ugly while standing inside it. When it started—back in the dark ages of junior high—it was exactly that: Outside of me. Other people called me ugly, and I believed it was in their control. They decide if I’m ugly; there’s nothing I can do about it; they’re neurotypical, I’m “wrong”; they know better. I don’t.
In high school, however, it changed. When someone would call me ugly, the word didn’t simply die in the air after it was said. The voices that spoke it were not without; now, they were within. That “little voice” inside. The one no one else can hear, talking at me, every second of every day. Telling me that I was ugly—telling me it was my fault.
It was in my control now. If only I could get breast implants. Wear makeup. Get rid of my “weird” toes. Not be too skinny to fit into the clothes that would make me beautiful. I am ugly.
After being told the same thing, day in and day out, I internalized it. I believed it. It shifted the burden from them onto me. Not only did I feel responsible for being “ugly,” I felt responsible for others’ reactions to my “ugliness.”
I felt guilty for looking the way I did—that, if I could somehow be not ugly, they would have something better to look at, and they wouldn’t be so mean to me. To my mind, it wasn’t their fault they were calling me ugly—they were just letting me know, because I didn’t know it myself.
By high school, I more than knew it. I knew, and could never forget.
I haven’t thought of myself as ugly for a long time, but I don’t see myself as beautiful, either. To this day, when someone compliments me, says that I am pretty, or cute, I don’t really take it in. “Ugly” is what I am more prepared for. I don’t feel it about myself, and I would roll my eyes at someone if they were to actually say it. But, somehow, it still feels closer to the truth than “pretty” does.
It saddens me that so many people have been called “ugly” in their lives, or feel that way about themselves now. We spend so much of our time trying to look like this “perfect” person, but that person doesn’t even exist. The standards that society has created are so impossible to achieve that even the people we think of as the “ideal”—tall, thin, blonde, whatever—see themselves as ugly.
For years, I desperately wanted to look like someone else. People sometimes do these “celebrity lookalike” things (“Oh, she looks like Gwyneth Paltrow!” He looks like Ben Affleck!”), and in high school, I would be devastated when I realized the only person that I looked like was me. I thought I couldn’t escape it.
Well, I was right. I can’t escape it. But the only person I want to look like now is me. Because that’s who I am meant to be.