Disability Isn’t Always What You Think It Is

So I called myself disabled earlier today, and immediately some self-righteous bastard who calls himself autistic jumped on me saying “being autistic doesn’t make you disabled.”

No. Just… no. According to him, autism isn’t a disability at all.

For clarity, yes, it absolutely does make you disabled. The literal autism spectrum disorder diagnostic criteria includes the requirement to be disabled to even be diagnosed with the condition: “Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning.” That’s the literal definition of being disabled. So if you’re not disabled, then congratulations, you’re not autistic either! So stop lying about being autistic if you don’t think you’re disabled.

However, beyond that whole mess, being mute is a disability in itself, which I am as well. And in my specific case, I have the condition of bilateral vocal-fold agenesis. In a way anyone can understand, I literally don’t have vocal folds. They just don’t exist in my body. Besides literally not having a voice, I can choke and die while eating, drinking, or even when swallowing saliva. I can’t even cough. A condition like the common cold is life-threatening for me because I can’t clear my airways.

Ever had a suction catheter being forced down your throat to save your life? I have. Multiple times. Do you know what a MI-E is? I do. It’s a mechanical insufflator-exsufflator, used for people who can’t cough by themselves, like myself. I have to use it every single day, more than once. I know many of the nurses and doctors by name in our local hospital, because I’ve been there too many times to count. They always know my name too when they see me coming.

And you want to know the worst part of all this? It’s feeling humiliated over and over again, every single day. Everything I eat has to be mashed or pureed to prevent choking. I have never eaten something like even a sandwich, because there’s a real danger I’ll choke as a result, so I have to avoid anything with normal texture. Try to imagine school lunch, when you’re the only one who has to eat what looks like baby food while everyone around you has normal meals. That’s my reality, every day.

I can’t drink normal liquids either – everything has to be thickened to this disgusting, slimy consistency so I don’t aspirate. You know that feeling of cold water when you’re really thirsty? I don’t. I get room-temperature goop that barely resembles water. Even simple things like taking a sip become a calculated risk.

But the humiliation doesn’t end with lunch. School itself is just as frustrating. I am in the gifted range according to IQ tests, but I struggle greatly at school because so much is based on group activities and verbal responses. My brain is faster than I can communicate. And I get excluded as a result so very often. It’s not like the teachers don’t understand my conditions—they do. They know I can’t speak and that I communicate through typing. But they still expect me to somehow keep up with verbal discussions and complain that I don’t integrate socially enough, while not actually creating ways for me to contribute that work with how I communicate.

The other students don’t get it either. They either think I’m intellectually disabled because I can’t speak, or they treat me like some kind of inspiration just for existing. “Oh wow, you’re so brave!” Like, no, I’m not brave. I’m just trying to survive each day without choking to death. There’s nothing heroic about basic survival.

I typically group up with my girlfriend and my closest friend, but teachers have a problem with that because apparently I don’t make enough friends that way. However, when I’m forced into other groups, there’s no real contribution by me allowed, because I am just completely ignored in the process. They’ll be planning their project and literally talking around me like I’m furniture. By the time I type something out, they’ve already moved on to three other topics. I would literally learn more by just staying home during those classes.

The medical reality is something most people can’t even imagine. Do you know how many procedures I’ve endured just to maintain basic bodily functions? How many times I’ve had equipment shoved down my throat? How many nights I’ve spent in the hospital because my body can’t do things that everyone else takes for granted? I’ve lost count of the emergency room visits, the panicked moments when I couldn’t clear my airways, the times when what should be simple became life-threatening.

And then the psychologists speak of “social isolation” and how I should avoid it, because otherwise I’ll face loneliness. Do they really believe I don’t feel lonely already? I am literally the only person internationally with my exact condition. There’s no one else I can connect with who truly understands what I’m going through. I’ve searched. I’ve looked everywhere for someone else like me, and they just don’t exist. The only people who sometimes show any understanding of my conditions are adults, but in today’s world, most adults are not worth interacting with. Sorry, but that’s my honest belief.

The average adult today is so consumed with politics that they’ve lost their understanding of basic humanity. It doesn’t matter if we’re talking about the right or the left—it’s the same destructive behavior on both sides. They see each other as less than human as a result of different beliefs, incomes, origins, appearances, and locations. The world feels incredibly lonely when you’re surrounded by people who have completely lost their sense of humanity and compassion.

And then there’s the whole online mess about who’s “really” disabled. Here’s the thing that really pisses me off: there are people who actually do fake serious conditions for attention and followers online. Those people are making my life hell. Because of them, every time I mention my struggles, there’s this cloud of suspicion. People wonder if I’m just another faker looking for sympathy. These attention-seekers have turned real disabilities into something people doubt by default.

It’s exhausting having to prove that my reality is actually real. When someone fakes a condition for clout, it makes it harder for me to get accommodations, to be believed by medical professionals, to just exist without constantly having to justify my condition. Those fakers give people like that guy who called me out the ammunition to question everyone else’s disabilities. They’ve created this environment where my conditions gets treated like it might be a performance.

Some people have actually told me I’m “lucky” because I don’t have to talk to people. Lucky. Yeah, it’s so fortunate that I can’t call for help when something is wrong. So lucky that I can’t participate in verbal discussions. So lucky that I have to carry communication devices everywhere for basic interactions. Real blessed circumstances there.

The medical system itself is another nightmare. I hate the well-meaning people who try to “fix” me with their suggestions. “Have you tried this therapy?” “What about this experimental treatment?” It’s frustrating because it’s as if I haven’t already been through endless evaluations and searches for help over the years, even before I was adopted. Every specialist, every possible intervention – we’ve explored it all.

When I express any frustration about these daily challenges, people act like I’m being “negative” or “not trying hard enough.” Like I should just be grateful and cheerful all the time because at least I’m alive. But being alive isn’t the same as actually living, and I’m exhausted from pretending everything is fine when it’s clearly not.

The reality is that I spend every day managing a body that can kill me with something as simple as swallowing wrong. I navigate a world designed for people who can speak, while communicating through typing that most people don’t have the patience to wait for. I eat food that looks and tastes like baby meals while everyone around me enjoys normal textures and flavors. I use medical equipment just to simulate basic functions like coughing. And through all of this, I’m supposed to smile and be inspirational?

So yeah, I’m constantly surrounded by people, yet I feel completely isolated most of the time. And some self-righteous person online wants to tell me that autism isn’t a disability? That my struggles don’t count as real disability?

Give me a break. I’m autistic, I’m mute, I have a condition that turns every day into a survival challenge, and I’m sick of people who know nothing about my reality trying to define what disability means. Maybe try living in my body for just one day—try eating only pureed food while everyone else enjoys normal meals, try using a cough machine just to clear your airways, try visiting the hospital every few weeks because your body can’t perform basic functions, try communicating only through typing while everyone else talks over and around you—and then come lecture me about what qualifies as disability.

Until then, just shut up and let me exist without having to constantly justify my own lived reality to ignorant strangers on the internet. I didn’t choose any of this, but I’m stuck dealing with it every single day, and the last thing I need is someone telling me my struggles don’t meet their arbitrary standards for what counts as “real” disability.