Don’t Tell Me I’m Not Disabled

It’s strange to see the community that fought so hard against being called “differently abled” switch back to insisting autism isn’t a disability.

Maybe you don’t consider yourself disabled, and you don’t have to. But don’t tell me that I’m not.

There is a middle ground between “tragically broken” and “just differently abled!” And I feel that a lot of us exist in that middle area. The narrative I’m seeing pushed by other autistic folks lately is that we are “only disabled by society/capitalism” and that statement is incredibly dismissive to those who are like me. I’m even what they call “high functioning” (now better reframed as low support needs). I have a steady job. I have an apartment. I have a lot of independence and freedom in my life. All of this is true and I am still disabled.

So why is it that it’s not just “society” that disables me? Capitalistic, ableist society absolutely makes life as a disabled person worse. I’m not saying it doesn’t. However, we could live in a utopia, and at the end of the day, I will still struggle to take care of myself. The part of my brain that controls executive functioning does not work as well as a neurotypical’s. That is a fact. This is where folks start to tell me “but why does it matter? If we all had support needs met, it would be fine.” I even had someone insist that communal living would eliminate disability. It’s insulting. Communal living is not ideal for everyone. How many of us need time alone? Would this ideal world just have some personal assistant that follows me everywhere, remembers the things I forget, and does everything for me, while also managing to not overwhelm me?

Let’s look at this another way. I suffer from chronic migraines. This is also disabling to me. Because of my migraines, I can’t always do things other people can. However, I have a medication that stops the onset of migraines. We could call that a support. The fact that this medication exists is life changing. However, it isn’t going to work every single time. Sometimes I’ve waited too long to take it. It also takes over an hour to kick in. If I don’t eat before I take it, it wrecks my stomach. I’m going to take it, because it’s better than sitting through a migraine. But my life would 100% be better if I just didn’t suffer from migraines.

I realize this comparison is flawed, and I own that. I think most people would agree with me that there are no positive aspects of migraines. There are absolutely positive aspects of autism and I am not discrediting that. I like my creativity, my passion for justice, thinking outside the box, and my empathy. All of these things are positives that I directly attribute to my being autistic.

But to tell all autistic folks that “we are not disabled” is a blanket statement and honestly, a lie. A harmful one at that. Even if someone could think of a utopia that fit everyone’s needs, it isn’t our reality and probably never will be. You can push for that utopia all you want. I’m not discouraging you. What I’m discouraging is telling someone else whether or not they’re disabled, or making blanket statements for all of us based on your own experience or idea. Think about what the word disability means. Not able. There are things we are not able to do. We need supports. And, if we want to look at a social model of disability, like our SSDI system in America, it’s already incredibly hard to get supports.

Now, beyond the social model and “utopia” talk. With supports, I am still disabled. The supports I can get do help, but they are a band aid that I still feel like I’m bleeding through sometimes. I have friends in my life that will and have come over to help me clean when I felt like I was drowning. You can argue that cleaning is a social expectation, sure, but my inability to stay organized is detrimental to me even if no one ever came over or saw my space. I’m not even talking about getting it sparkly clean, but even getting to a functional space is a constant stressor. Not being able to find things I need. Mess piling up in a way that can turn unsanitary. How many of us struggle to brush our teeth regularly? That is something that literally affects our health. Even if I’m not worrying about what others expect me to do, I’m still going to wish I could even get myself to do things I want to do, like making art.

I haven’t even gotten into the fact that some sounds physically hurt me, or the fact that my SPD affects my ability to sleep, which affects my physical health. Or the physical ailments that often accompany autism like gut issues.

I’m not “pro cure” and I want to make that absolutely clear. I do value myself and being autistic does make me unique in ways I wouldn’t want to change. But to only acknowledge the positive and not the disabling factors many experience is going to cause us even more struggle to get help for those things. I don’t want to delete autism from the gene pool. I do want treatments targeted at symptoms to be studied more so they can be improved.

And I especially want others, whether it’s neurotypicals or other autistic folks, to stop defining me. Again, I’m not a tragedy or inspiration, nor am I an indigo evolution of mankind. I’m not even “differently abled.” I am disabled, and that’s okay.

I went to a protest

This weekend, I went to a Black Lives Matter protest.

Why did I go? A few reasons.

-I am queer. My own community would not have the rights it has right now if we had not rioted against police brutality at Stonewall. This is celebrated every June. The Stonewall riots were started by a black trans woman named Marsha P. Johnson. The Black Panthers backed us. It’s our time to back them.

-I am autistic. Police still unfairly and violently respond to autistic people in distress. I am fortunate, but still not ok, that my worst experience with police was being patted down for drugs, at 9am, dressed in work clothes, on my way to work, because I was acting strange. I am privileged that I mask (appear non-autistic) well enough and appear non-intimidating enough to have only gotten patted down. My strange behavior could have gotten me arrested or killed if I were black. Autistic people, including teenagers, have been considered a threat to police for acting odd. Even when a teenage boy said “I’m autistic. I’m stimming,” he was still manhandled and traumatized because the officer didn’t know what that meant.

-Most importantly, I care about black lives and injustice. Even if I had never had bad experiences with police, I still hurt for those hurting. I still feel the anger and loss of another community, and even if I can never fully understand, I care.

Intersectionality is incredibly important to me, and should be to you too.

I want to also address, I am incredibly privileged to be where I am on the spectrum. The protest was HARD on me, let alone someone with worse SPD or more needs.

So, I want to mention that if you can’t protest because of your needs, your health, etc, I am absolutely not condemning that or trying to say “I’m autistic and I was there. Why weren’t you?” That’s gross. I absolutely respect those of you, autistic or not, who had reasons they couldn’t show up. But if you can, please consider advocating for others (and yourself) by sharing information, calling out others (again, if you can. I can get nonverbal when upset so that’s actually harder for me than marching), and donating to organizations if you have the money.

Back to the protest though. I want to share my experiences.

I was fortunate that the protest was organized well, passed out masks and water, and people seemed to respect my space. Social distancing could not be 100% sheerly for the volume of people there, but I never felt trapped or claustrophobic.

The protesters were peaceful. The organization expressed they did not condone violence.

Unfortunately, that was not the case for the police. I never felt threatened or scared of my fellow protesters. There weren’t many counter protesters, but we simply walked past them. However, when we surrounded a certain building, police began to throw tear gas and explosives off of rooftops. After that was when people began to destroy things (still not other people, and also arguably the police or saboteurs. The agitators had not been identified.)

A few things that happened that were notable:

Despite this being a protest for black justice, multiple times white people tried to take the lead, and when they did, the chants were much more aggressive. (We typically chanted Say his name / George Floyd). When the white people who brought megaphones (after leaders expressed multiple times for us not to take the mic), their chants were more aggressive. “F*ck the police.”)). I was happy to see so much diversity in who showed up, but disappointed that even in matters of black justice, white people felt entitled to control the movement. That doesn’t just affect us, but affects the perception of the BLM movement.

However, most people were still there to help, checking in on others, passing out water and first aid. When the explosions happened near me, I jumped and covered my ears. At on point, a group of POC protesters pulled me under an overhang away from where rubber bullets were being shot. (Normally, I’d be upset at strangers touching me, but bless these people for protecting me).

I wish I could have been on the front lines, but I was terrified. I don’t think I could have composed myself enough to join the wall of white bodies protecting black bodies. I stayed longer than I thought I would though, and tried my best to help others as they had helped me.

By the time I left, most of the city was blocked off, including the public transit area I had arrived on. I had to walk 2 miles to get to a train.

Again, I have to express how grateful I am for my able-bodied privilege. There were people in wheelchairs there, and people who were injured, turned away from public transit and safety, by those who “protect and serve.” (only property, apparently). Forcing them away from easy routes out of the city meant that cops were trapping people into the area, some of the most vulnerable. And to make matters worse, arrests were beginning at a certain time if people didn’t leave.

Even though some people could not.

It felt dystopian. It is dystopian. If you rooted for Katniss, for V and Evie, for Jean Valjean, for Shuya and Noriko, and even in history- for the Boston Tea Party, for Rosa Parks, for Malala, for Harriet Tubman, for the Allies in WWII, you need to root for the people now. Silence is violence, and it has always been that way.

I have disabled comments, as this is not open for debate. If my politics bother you, you are welcome to unfollow me. But if it bothers you when an allistic person tells an autistic person how to be, think, feel, and advocate, you should not tone police how Black POC are protesting. I am white, and can only share my experiences as such, but whether or not POC had reacted in anger or peace, it is not my place to judge or decide.

Thank you for reading.