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
disability
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.
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.
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.
Sex With Limited Mobility
Growing up, we saw physically disabled people as the odd ones out. I could take responsibility for viewing disabled people that way, but that was how everybody around me viewed them. I had no chance of “knowing better,” at least in that environment and age. That was the case until I was introduced to this class and had a fair share of friends who were open-minded. These people changed my thinking in both positive and negative ways, but the point that they taught me that people are different; not everyone is going to look and act the same as everybody else, and that is okay. I know the previous statement can come out as a very “duhh” statement for most of yall; however, I didn’t use to think like that. It was more of “you are weird! something is wrong with you.” And of course, like most adolescents who are just discovering sex and how it works, I wondered what sex must have been like for people with spinal cord injuries and other disabilities like that. I asked myself, “Do they feel anything down there?” or questions like, “can women who are paralyzed from the waist down give birth?” Most of these questions came from mostly ignorance and a bit of curiosity.
Sexuality and Disability: The Missing Discourse of Pleasure by Mitchell Tepper opened my eyes to this issue regarding disabled people and sex. An article like Tepper’s is exactly what people like me missed back in junior high. From reading the article, I learned that sex is more than just borrowing some friction from a partner, and there are more ways to derive sexual pleasure that does not involve the privates. I found it heartbreaking that some disabled individuals give up on their sex lives because they believe that there is no point in trying, “nothing will be the same.” And that is when Mitchell Tepper steps-up and encourages people with SCI that their “sexuality is their responsibility.” These people learned more about the spinal cord-injured bodies and embraced their disability. Evidently, disabled people in wheelchairs tend to have a more difficult time finding a sexual partner than abled individuals; most of this is due to the stigma around disability and sex and partially due to self rejecting before they can even try. Self rejection is a problem that we need to tackle. We (teachers and professors) need to teach about pleasure and sexuality in order to shine a light on this topic of sex and disability and hopefully reduce the stigma and misinformation around disability and sex.
What is a disability?
Disability is anything that hinders your ability to perform specific tasks or just live your life normally. Some people are born with disabilities and those are the ones that are physical. But what about the other conditions we don’t really think of as a disability.
The thought of never being enough or not feeling confident or traumatized by past experiences. All of those things and many more are a part of disability as well. Because they make you feel less of yourself and hinder your ability to ever feel enough or even perform certain tasks accurately. Let’s say you hate your body and to not get judged you don’t go to certain stores in the mall so the people inside the store don’t judge you. No one might judge you but the thought of just being “different” which is either stemmed in you by you or by someone else, gets in the way of you living your life comfortably.
One other example could be some parents putting high expectations on their child and the child trying hard to get to that level. But until that child gets to that level, anything he does before it will just make it seem like he hasn’t done enough. This is when parents should stop expecting things from their children and instead appreciate them for what they have achieved so they never stay in that “never being enough” complex.
In the end, my point is that every person almost has a disability. The inner demons we all have are our disabilities because those demons make us less able in some situations. The difference is that if the inner demons are worked on, they can go away but other physical disabilities are permanent. So, it will be wrong to say the disabilities we have within ourselves are the same as chronic illness or other serious disabilities. But anything that interferes with our ability to be the normal version of ourselves meaning being at your full potential is a disability.
A world built for us
What would the world be like if it was built for us? The world as it is now is so unaccommodating to anyone who isn’t cis, straight, white, male, and able bodied. Whether it’s lack of gender neutral bathrooms or failure to provide disability access in stores and restaurants, the world we live in now is not built for people who don’t meet the western societal standards of what a perfect body should look and function like. That being said, why isn’t the world more accessible? Aren’t we the ones who decide how the world should work? So why is it that we continue to make these things so inaccessible when it is an easy fix? It’s so engrained in our society that this is just the way things are and that we should just accept it. It’s like the saying “if it’s not broken, don’t fix it” except it is broken and we refuse to acknowledge it. There are so many ways in which the world could be more accessible that just aren’t implemented tin the way they should be. Like why do we not have wheelchair ramps and elevators at every establishment? We could make all restrooms gender neutral as well. Small things such as this would make the world a much more accessible place for everyone to live and be happy. I guess I just don’t understand why we would go out of our way to make things inaccessible for those who need these things. Not to mention it would help everybody, not just those who you would think need it. An example would be parents withs strollers, a ramp would be helpful to them too so they don’t have to carry the stroller up a flight of stairs. Moral of the story, the world could be so much more accessible if we just decided that it should be.
“F*ck your disorder”
A few weeks ago I had a difficult bipolar/autistic meltdown that spiraled me into a dissociative state. I say bipolar slash autistic because the criteria and symptoms for both disorders overlap so much that it is nearly impossible to tell them apart within my own body at this point. I wasn’t able to attend some of my classes for two weeks because my mental state was feeling immensely guilty about using my accommodations. Every time I typed up another email to a professor, saying that I once again had to rely on my disability accommodations, I felt my chest tighten with anxiety and guilt, as if I was doing something wrong by needing my accommodations. I didn’t want my professors to think that I was lying to get out of class to go out with my friends. To be fair I did hang out with my friends and try and do stuff during the time I had class, but everything we did was an attempt to pull me out of the dissociative state I was in. As someone who has heard numerous times that they don’t look “autistic” or “disabled”, I am aware that this is a judgment that many pass on me, and I was aware that my professors may think that as well. Perhaps out of guilt, I sent an email to my professors, explaining that I had bipolar disorder and was struggling to pull myself out of a rough episode that left me unable to even read and comprehend the readings for any of my classes. Most of my professors answered with supportive statements, validating my disability and granting me as many extensions as I needed. One professor emailed me back, ignoring the fact that I had just opened up to him about my identity, and demanded I turn in my work within 48 hours, because the accommodation guidelines offered a 48 hour extension as an example guideline. Evidently, I was not able to get my work in, because I am not able to pull myself out of a dissociative episode on command; to make it worse, when I finally returned to class the following week he spoke negatively about bipolar disorder in class, leaving me stunned and panicked. I made the rather obvious assumption that I wasn’t his favorite student. Rather than fighting with him every step of the way, I decided to withdraw from the class, postponing my graduation from this December to May. I was devastated telling my parents that I would not be graduating as soon as they thought, and I was even embarrassed, knowing that if I pushed myself I could have made it through the class. But just because you can do something as a disabled person, doesn’t mean it is worth it. I was reminded in a somewhat blunt manner that not everyone will accommodate your disability, and sometimes it’s better to give up, then to fight for your right to take a class.
The emotional labour it would have taken for me to fight with this professor every step of the way, just to most likely pass with a C in his class was not worth it for me. Personally, I am proud of myself for knowing my boundaries and how far I can push myself. He made me feel weak and made me hyperaware of how people view me as someone who is bipolar and on the sepctrum.
Subtle ableism is so present in today’s world that it goes unnoticed by most, unless we are directly affected by it. For me, this was an example of direct ableism, someone who would do the bare minimum to accommodate my needs, and refused to do anything more. It was dehumanizing, but it also reminded me how lucky I am to not be faced with people like him, and ableist challenges on a daily basis. Our world was not made for disabled bodies, whether it’s expectations at work, to campuses being not accessible, to the general population applying certain stigmas to disabled people as a whole. As a physically abled person who is usually able to mask their disability in public, I don’t have to constantly worry how I will make it to class on time, or if the elevator will work today, or if I will be able to make it up the hill to my building for class, and that gives me a certain privilege. The dialectic of both being disabled and abled is an interesting limbo to live in. I can’t imagine how it would be if I had to worry about physical disability on top of my ever present mental disability, still, I can’t help but wonder if I would have been treated better by that professor if my disability had been more visible.
Attitudes
I never wanted to be like her
Always complaining and never solving
Making others push her around in a wheelchair when she could still walk
Never taking her medication even as she complains about her failing health.
As I got older, I stopped wanting to be like him too.
Never visiting the doctor
Always making excuses for his aches
He let his body fall apart
Too afraid to admit he needed help.
I was glad they made me independent
They taught me not to make excuses
They taught me to work harder to be like everyone else
They taught me to get a stool when I was too short
They taught me to go to doctors and take my medicine
They taught me to be better than they were.
I wake up at 8 am
I take my pills at 9am
I wear my brace
I wear my prosthetics
I wear a smile
I need help, but
If I fall apart
I can put myself back together
I feel sorry for them
I want to help them
I know I can’t
They gave strength
They gave me choices
They gave me what they didn’t have
Thanks mom and dad ❤️
Dispair / *Despair
I have many impairments. I need glasses. I need tasks repeated, written down in planners, reminded of multiple times throughout the day, written in front of me, with a harsh deadline in order to get done. I even had braces, and should be using my long-lost retainer inside a hot-pink case to keep that “aesthetic impairment” in check (sorry to my future dentist). But I don’t think I would have ever considered myself disabled until now that I’m facing mobility issues.
Read more: Dispair / *DespairTo be frank: I still don’t consider myself disabled. I just think the possibility is higher now. I’m older (not too old), and have had incredible stressors placed on my body (an example being COVID in May, as well as the mental stressor of work and a deteriorating friendship) – it’s natural for things to start “falling apart” or “not working as well as they used to”.
But buddy, if you have these impairments – surely you’ve been disabled this entire time! Like, sure, I guess. Except for the fact that my visual and cognitive impairments are the “more manageable” impairments that I face. I have glasses, although I need to go in to update my prescription every few years. I have ADHD, although I need to constantly ensure I can get access to adderall without jumping through ten thousand hoops – not to mention admitting my amphetamine results on drug tests are because of medication, something I am always embarrassed of (another conversation for another day). Mobility impairments aren’t in the same ballpark solely because the “solutions” are less accessible.
In order to check that my ankles are chronically messed up, I have to have routine conversations with my doctor. This means testing out theories of new/different shoes, stretches, exercise plans, and pain medications. Some of which could help, but only for a few periods of time. Others can have no impact whatsoever, or even make my pain worse. Once these are all ruled out, then comes the tests. X-rays. Blood tests. Gait checks. Then the waiting. Then the results. Then the realization, whether good or bad – that I need help. Then the vulnerable accommodations. Begging to be taken seriously, if I was even given the advantage of being taken seriously from the get-go, which not everyone is privileged to. I’m fortunate enough to be working somewhere where the walk from my car and the building isn’t too harsh, but from Parking Lot 29/Walker Apartments (wherever there’s a free commuter spot) to Engineering is absolutely unbearable. So the disability pass – if I even qualify for one – would only be for school, which already feels like a debate that’s waiting to happen: are you really disabled?
That’s when I circle the drain. Is it easier to just accept yourself as impaired, but not disabled? But then, how do you gain accomodations for such impairments? Do you just stick it out, saying it’s not worth it and continue suffering in silence?
Why has society ruined the idea of being disabled?
Unruly Bodies 