disability

by

Life After Diagnosis

Phenomenology is the study of first-person experiences and sensations that give life more meaning. When we were discussing this topic in class I immediately thought about how much my experience and perspective on my life shifted after my adult autism diagnosis. After the diagnosis I began to look back at my life and pick out moments and traits that, in hindsight made so much sense with me being autistic. But before the diagnosis, were just a confused, muddled mess. I remember thinking back on basically every interaction I had ever had and wondering if I would have reacted differently had I known. They say ignorance is bliss, but in all reality the not knowing led me to become a traumatized, jaded individual. The world isn’t built for autistic folk, and imagine going about your life wondering why you are facing barriers and roadblocks at every turn and not even knowing why. It messes with your sense of self and you begin to think something is deeply wrong with you. I am still having to unlearn that one. Yay for therapy!

Something that you do when you spend your whole life not knowing you’re autistic, is you get really good at masking. I was able to play the part semi-well and be sociable, friendly, and well-mannered. And when I got older I became even better. But when you learn that you are autistic, that mask begins to crack. It crumbles away and you are left with a messy, soupy, puddle of sensory issues, lack of social awareness, and fixations. It’s extremely common for adults who are diagnosed with autism to regress in a lot of their skills once they find out about their diagnosis. After holding themselves together by the seat of their pants their whole lives, their whole world is turned topsy turvy. This is what happened to me. It’s taken me years to reacclimate to my new way of perceiving the world, and myself. Slowly I’ve built myself back up and created a new, stronger identity. Diagnosis saved my life.

by

My Invisible Disability

(Trigger Warning: mention of ABA therapy) 

Although I haven’t formally been diagnosed with autism, the understanding is that if you feel as though you have autism you should treat yourself as if you have autism. As the Stevenson article discussed the infantilization of autism erases the existence of autistic adults. But, here I am an autistic adult. I can discuss my experiences with autism. 

I did not have any experience with ABA therapy. At best it seems controversial at worst it looks problematic. As we discussed in class if we have adult autistic representation in the ways of them talking about their experience with ABA therapy and how destructive it can be. Then, this would lead to a capitalist problem, in that, it would lead to the multibillion-dollar industry of ABA therapy to its demise. 

Growing up I would stim, have trouble with eye contact, not understand or be able to read emotions, and was just in general weird. Not to associate negatively with the word weird just like atypical, not a part of the norm, not “normal.” Whatever that means. No one noticed. Maybe I became really good at masking? Later in life, I thought I had ADHD, another invisible disability, this explained the stimming, but not the other symptoms. But, here I am an autistic adult. And I’m confused about what I should do in the future. A diagnosis is much too costly and I don’t know if it would help. I guess I will just be emboldened by community. 

by

I wish I could give myself a lobotomy

This is gonna be a word salad but it’s actually crazy navigating this world as a person with anger issues, bpd, anemia and autism. I know, girl pick a struggle. To give you a little glimpse into my life. Being anemic is weird. As stated in class, people only think disabilities you can see are valid. And don’t get me wrong if I’m being honest I don’t consider being anemic disabling but maybe I don’t consider it disabling because of that subconscious bias as well. As someone with anemia one thing I do ( as well as others) is when I get up too fast my vision gets fuzzy like I’m seeing circles and static and I have to lean over and sit sometimes even lay down. One could argue that that is disabling. And I could see why because that affects me when I’m working (as a receptionist I’ve had to do that sometimes) when I’m at a conference or meeting or babysitting just anything in life.

Read more: I wish I could give myself a lobotomy

Don’t get me started on having bpd- I sorry un-medicated and untreated bpd. And yes you guessed it ( that is because of finding a psychiatrist and therapist that will take our parent’s insurance). It affects every aspect of my life as well but especially my relationships with other human beings. People think they are accepting and “woke” until your friend goes off and becomes satans right hand man in an argument and then 25 minutes later is like “bro remember this lmfaooooo” like NOTHING happened. I’ve lost friends over it. And I’m not okay with it. I’m not. I’m not gonna sit here and lie to you guys and be like it’s whatever it’s there loss. No my feelings are hurt and I wish I didn’t have this in my brain. It’s almost kinda debilitating. But idk it feels wrong to call it debilitating because that feels reserved for things like schizophrenia, Down syndrome, paralysis etc… I wish I could just take a pick and fix my brain and be normal. Yes I said it. Don’t believe these people- having mental illnesses is not normal and that’s okay. It’s not a bad word.

Read more: I wish I could give myself a lobotomy

And to TOP IT ALL OFF god just had to make me neurodivergent as the final touch. Everyone in my family is neurodivergent. From my mom to my dad to me and my little sister. Shit we think the dog is too 💀. But it’s so crazy cuz the reason my parents (mainly my dad) never had anything done about it was because not just because they didn’t have the money, but also the community they’re in. It’s already bad enough society is so 👀 about being autistic and then you have the black community which is like worse towards people who are different. For lots of black people who have autism/neurodivergent or physical disabilities, our first and main bullies are the people who look like us, talk like us, dress like us, worship like us. It’s so alienating. Don’t worry it’s gotten better because of the newer generations but it’s just like damn can we catch a break . It’s a good thing this is not an on paper assignment cuz there’d be tears stains all along the page😹.

by

Deaf Fest

As I was watching Crip Camp (2020) for this class, I was reminded of one of my favorite childhood memories. My mom was a special educator for the Deaf and Hard-of-Hearing for around 25 years. She used to teach in the city schools of Brooklyn, and began working in Baltimore City when my family moved from New York to Maryland. My mom was like a second mother to her students. She would often bring hot food to her students around the holidays, crowd-source school supplies, teach her students Latin-dancing, and even would have some of her students over to her house when they were having a rough time at home. I treasured the days that I was able to come visit the classroom and her students. It always made me smile to see how my mom so deeply cared about her kids.

Group of smiling children on a school bus, wearing matching white t-shirts that say "Deaf Fest" in red text. All of the children are holding peace signs up with their hands while smiling at the camera.

One of the things my mom and the other teachers did for the Deaf and Hard-of-Hearing students every year was Deaf Fest. One sunny day at the beach every year, complete with matching t-shirts designed by my mom, grilled hotdogs, hamburgers, pavilion snacks, arts & crafts, and games. The bus ride to the beach was loud and cheerful, and every student was so excited for the festivities to come. The students gave me my sign name during Deaf Fest one year- the letter “S” combined with the sign for “dance”, because I was always dancing around the classroom when I came to visit them. On the bus and in the pavilion, my mom’s students would help me learn sign language by signing to me. Even though I was very young during these years, I could feel the powerful sense of community Deaf Fest brought.

A group of students smiling for a picture with their teacher outdoors. The background is bright green with trees and greenery, with the sun peaking out of the trees.

Although Deaf Fest only happened one day at the end of the school year, I was reminded of the happy memories it brought as I was watching Crip Camp. Nostalgic images of Deaf Fest floated through my mind while I witnessed the ways in which Camp Jened members were seen and supported during camp. I also saw resemblance in my memories of the days spent in my mom’s classroom, how the school system rendered these kids invisible to the hearing world. In my college years, I find myself eternally grateful for being able to experience the joy that Deaf Fest brought to my mom’s students, and I hope that I have the privilege of experiencing that level of community again.

a group of students, some sitting and some standing, posing for a picture with their teacher under a pavilion on a bright and sunny day.
by

Your Disability Is In Your Head

Trigger warnings: mental illness, SA

My disability, as I’ve been told by my parents during some of the hardest years of my life, is all in my head. The accumulated and compounded effects of strife in my life that eventually developed into a deep, dark depression- it’s not physically tangible, so how could it have been real?

I have a unique relationship with my disability. The one that I grapple with the most is one that is acquired, not inherited or born into. I have post-traumatic stress disorder, and I am not a war veteran. I am a sexual assault survivor. My disability was acquired through experiencing trauma and then experiencing the more deeply horrific experience of utter social isolation, lack of support, and lack of real mental health resources for someone of my age, specific trauma, and cultural background. I was diagnosed when I was 13, before I realized I have ADHD, depression, and GAD. Most of those are co-morbid.

My relationship with my disability was very much through the lens of the medical model- something is wrong with me, it is my problem to fix, and in the mean time, *some* institutions and people may be willing to accomodate my different needs despite the burden that it is (that I am), but ultimately the onus of responsibility for my disability, for my neurodivergence and its physiological consequences, is on me.

I realized much more recently that this may not be true. This semester, it was reiterated to me in the form of Tom Shakespeare’s reading about the social model of disability. // In our view, it is society which disables […] impaired people. Disability is something imposed on top of our impairments,
by the way we are unnecessarily isolated and excluded from full participation in society. (p. 215)//

I don’t agree with every aspect of this reading, such as how mental disabilities are not acknowledged by the founders/ creaters of the social model. But I do resonate with this new way of thinking- that the structures we live within are not inclusive to all people that live within them. This leads some people to struggle much more than others to get through their days.

I only started truly believing recently that I deserve the accomodations I have. Not because I didn’t believe that I was disabled, but because I saw them as a privilege. But I see it differently now. Not everyone has to deal with what I deal with every day. That doesn’t make them better than me or more normal than me, but it means that their phenomenological experience of this world is not the same. Nobody gets to tell me that my disability isn’t valid when they have never walked in my shoes. Nobody gets to tell me to suck it up and find a way to make it through when I see how so many people are able to do with ease, the things that I struggle and toil to do.

Also, yes, my disability is all in my head, in a literal sense. But that doesn’t mean it’s not real.

by

My Reflection

Who am I?
I,
I’m my thoughts,
My dreams,
My aspirations.
I’m my name,
My looks,
My imagination.
That’s what I see,
When I stare,
Into my reflection.

My reflection,
Ripples in the river of life,
The shallow,
Shallow river of life.
To the world,
I am my reflection:
I am only what the world sees,
Only what the world decides I am.
My body is but a vessel;
Why must the world ignore me,
But acknowledge the vessel?!

Books, merely objects
Are still judged 
By only their covers,
So who am I to demand
They not judge me
By only what they can see.
The inside of a book
Is where the value lies
But most people don’t bother;
It’s easier to judge
From the outside

My body is a part of me,
It embodies my soul
My personality,
But it is not all I am.
I am not my scars,
My disability,
I am me,
A completely separate entity.
I, Me,
Not just what you see

by

OCD isn’t really cute

OCD is like (and I apologize for what I’m about to do to some of you) The Game. Always there, but not a problem until it becomes a conscious thought. And then it’s on replay; like The Game, trying not to think of it only makes it worse.

Years ago, I was luckily “exited” from The Game. Although I’ve not seen this ever described as an “official” rule or solution to The Game, I choose to believe that one could be “exited”. Since The Game functions a lot like OCD does (at least, for me), it’s not some cute mind game that we all play together, it’s a reminder that my brain doesn’t work the same way everyone else’s does. I have a million little “The Games” I’m playing constantly in my head—if a pencil is turned toward me, if I notice it, it has to be turned away. If the “Best By” date has passed and I notice it, I have to throw it out. Well, I don’t have to, but my brain will make it seem like the end of the world if I don’t (and that’s on magical thinking, which isn’t as fun as it sounds).

Diagram by me!

There’s more, too: intrusive thoughts, which are not what TikTok makes them out to be; object personification, which leads me to hoarding, unable to give away anything because I fear it ending up trashed, abused, or unloved (which is of course made worse when coupled with ADHD and impulse buying). Like many others, I have to do things in equal measure to my body. If I chew my nails (as I have a bad habit of doing), I have to chew equally on both sides of my mouth, and then the whole nail has to be smooth, which often means I’m stuck chewing on my nails until it’s too painful to continue. Or I have to step on the stairs evenly, which might make me go back and walk back down the stairs if I wasn’t able to get enough steps on my left foot.

The thoughts are easiest to stop when you don’t even give them the chance to talk; you look away from what triggers the obsession, you walk away, leave the room, remove yourself from the trigger, and the voice doesn’t get the chance to talk. You look like a madperson when you literally plug your ears and say, “La la la!” loudly, but you do what you have to to block the thoughts from forming. Blocking them is hard, but resisting is harder.

It’s not fun talking about OCD, I know. I understand the looks of discomfort, fascination, scrutiny, disbelief when I talk about why I do what I do or the process of my thinking. It’s as crazy to you as it is to me. I know how alien it is to many; it’s clear from how I’m treated.

The Game is a reminder that I do not belong to the same world as everyone else; that I cannot escape this, even in the most normal of moments, even in elementary school games. That, at the end of the day, most people can decide whether or not they want to be a part of The Game, but I have a voice in the back of my head telling me society will literally collapse if I allow myself to exit The Game.

But someone exited me from The Game, so I don’t have to play it ever again. Years of therapy and learning how to cope with OCD have helped me learn that I can stop those thoughts on my own (most of the time; I’m still getting stronger).

If you’ve read through all this, I hope this helps you understand a bit more how OCD can work (and it can be more or less extreme than it is for me than it is for others). And, if you need to be exited from The Game too, consider this your official invitation to stop playing the game. I promise, nothing bad will happen.

by

His little world

I wanted to talk about my family friend’s son named Shaun. I’ve known Shaun for a while, he was really young when I met him, I was still young however, in my middle school years I was still learning things. Shaun, along with his brother Stefon were autistic. Whenever it came to the family parties I would be the one to watch over them and keep them company since I was still young and couldn’t be a part of the adult or even the teenage conversations. Shaun was an interesting kid, although he didn’t communicate verbally with words, I felt like I could still understand him and what he needed. I felt like I could understand his emotions.

Shaun would always get in trouble for breaking things, but I knew it was him just stimming because that was one of his habits. I remember during a Christmas party he grabbed one of the ornaments from the tree and smashed one to the ground, and then another, several times until he was stopped by his mother. Shaun got in trouble with his mother. I felt bad for him, I knew he wasn’t doing it to make anyone mad, yet his mom did get mad at him for doing it anyway since it wasn’t his house. She looked defeated, like she didn’t know how else to help him whenever his behavior would get worse. She looked tired too, like she was doing everything she can to just enjoy her time at the party and also watching her boys making sure they didn’t break anything or do something dangerous. My parents loved Shaun and his brother, my dad always made an effort to let Shaun be seen, playing with him, making jokes and funny faces. Whenever Shaun was with me, I tried my best to entertain him, to make him feel heard. He always had a fascination with my hair (back then I used to have hair that would reach the floor I had to keep it in a braid since it was so long, I’m not kidding haha) so every time we sat in a room to calm him down he would touch it and slowly begin to settle. The way he felt my hair and stared at it gave me a sense of comfort knowing that I was there with him making sure he was okay. He would hum the majority of the time, whenever he wanted something he would hum in a pattern and point at the object that he wanted. Shaun never had good focus either, after touching one object he would go onto the next and then the next. Shaun’s mom works with other children who are autistic, whenever she would come to these parties, she would bring books for them to read, I would read the books to Shaun and his brother. Shaun was always mesmerized by the images in the books, he would hum and point at the characters. He always made me feel like whatever I was doing was helping him and that gave me a deep sense of reassurance.

Sean was very excited about noises but more specifically with car keys. Whenever it came to these parties or Mass services because we do services in different people’s homes, Shaun would actually find people’s keys and take them and play with them because he loved the sound of the jingling. My dad didn’t care, he would give Shaun his keys so he could be happy and play with them. Of course he didn’t know any better because he didn’t understand the ownership of somebody’s property. I always felt like the adults who would get their keys taken away wouldn’t truly understand how happy it made him. They would just get a little frustrated because of the fact that their property was taken away from them. I definitely think being in middle school and being exposed to that environment where somebody has a disability made me confused at first because back then I didn’t know the true meaning of autism and the levels and how there’s a spectrum. I only got to see the behaviors and patterns of somebody with it during that time, but now being an adult and learning more about autism and neurodivergence I slowly start to understand Shaun and his behavior. He just wanted to be understood because of his different way of thinking. Unfortunately due to family issues in the past I haven’t seen Shaun in a while but I hope right now since he is older that he’s getting the proper care and going through a more suitable way of teaching for him to understand. I really do think Shaun is a good kid.

I just feel like people are always afraid to try to communicate with people who have this disability because they don’t understand the way autism works and the levels of the spectrum. Every time I see a child with autism, or introduced to someone, I am never afraid to interact or learn from them, because with Shaun, all I ever did was make him feel heard and safe, and I want to do that for every other boy or girl who has autism. Society likes to put this negative connotation and label of people with disabilities which to me is just undermining their true potential and power, I learned a lot from Shaun and my other experiences after that, and seeing how their minds think and interact made me open my eyes to a whole different concept of learning and understanding. I learned more patience, I learned to really slow down my “normal” thinking and try and fit their perspective into my life. Doing that type of thinking really does open up your mind to a lot of ideas and thoughts. I am thankful for Shaun and the way I made him feel comforted and cared for, that’s something I won’t ever forget. I do know his parents were really good when it came to teaching him, but just like Shaun and other kids who have it I hope the world is able to see that there is nothing wrong with them they just have a different perspective which isn’t and shouldn’t be seen as a negative thing.

Let me make my silly little choices, and you can make yours.
by

Let me make my silly little choices, and you can make yours.

Front cover of the Sudafed PE OTC box.

Recently, an FDA panel announced that Sudafed PE and other decongestants are, essentially, ineffective. Since this announcement, I’ve seen countless articles pop up on my Google News feed about removing Sudafed PE, Mucinex, and Benadryl from the shelves. The argument to remove the medicines is that we shouldn’t be selling ineffective products–but are they really ineffective? An argument can be made that these are exceptionally effective placebos (sugar pills/ineffective medicine).

The placebo effect is well documented; even when a patient knows they are taking a placebo, sometimes just taking a pill helps to trick the body into the desired effect. Bodies and minds are weird, and whatever works, works. Even if Sudafed and its relatives are little more than placebos, I think they should be allowed to stay on the shelves. After all, the placebo effect can reduce symptoms by up to 50%, and that’s more than enough to convince me.

For all the many ailments I have–visible and invisible, temporary and chronic–very few have effective and fast solutions. There is no Xanax for depression, no Zofran for migraines, but there is Sudafed for a stuffy nose. Maybe it’s silly to continue to take something that has been proven not to work, but I swear I feel my sinuses clear up minutes after taking Sudafed. It allows me to get a restful sleep instead of battling with the correct sleeping position that allows me to breathe.

With the lack of effective medications available for a variety of illnesses, I am frustrated by the attempt to remove existing medications instead of putting new ones on the market. While I am not necessarily a fan of being stuffed full of pills, I like having the hope that maybe there is an accessible medication out there that will work for me. When the number of approved medications is even further limited, frustrated and exhausted people like me turn to home remedies and endless concoctions of honey, sea salt, herbs, and usually get roped into the wellness industry once or twice.

If Sudafed doesn’t work for general populace, there is nothing I can do about it. But whether it’s the placebo effect at work or there really is some merit to Sudafed, let me decide how to spend my money. Taking Sudafed off the shelves leaves me one less remedy for a restful night–and when I’m combating so many other ailments for a moment of peace, this tiny relief is a huge victory for me. Leave the silly little pill on the silly little shelf and let me make my silly little choice; you are free to pass it in the aisle if you wish, but leave some for me.