Defeatism on Disability
Month: November 2022
My journey to rebranding disability through achievement
Disability is not a monolith, nor is it within a void, absent of other influences like class and wealth. I am a great example of this. Like many people, my experience with disability is quite unique, but it was a journey paved with class struggle, and an unpredictable home life. These experiences paved the person you see in front of you today, and as much as I wish everything could’ve been different, but I don’t think I would have the grit I have today without my struggles.
Being born in a lower-middle class family is tough. Especially with ADHD and Autism. When you make a mistake you can clearly see how your actions which are out of your control affect your family financially. It feels me with guilt to see how difficult I made my parents lives with just me, being me. My home life wasn’t much better…. This was during a time when my father and mother were going further apart. My father brought prostitutes home, and my mother neglected us. As a result I started acting up in school, causing more hardship in my family. My childhood was an experience forever marred by guilt and self-doubt. I was also bullied in school and was constantly reminded that I will amount to nothing in this world.
While my father was becoming a better parent and my mother became more resentful, my teenage years were filled with me trying to find an identity. During high school, I decided to run track. My coach had become a second father figure to me, and together with my father, helped me cope when my mother abandoned us during my freshman year. Because of Covid, I had to revisit this all over again during my first years of adulthood. Not only did it ruin my dreams of running track in college, but it also caused my mother to pass away after years of not seeing her. I regressed back into my self-loathing self, and I felt that it was my fault that I never forgave her so that I could be at peace, and it made me ponder about my own mortality. In my subsequent semester, I was worried that I was going to amount to nothing in the world, like what those bullies told me. Throughout this episode of self-loathing, I forgot about the reality that I am failing my classes.
The summer of my freshman year, I set a goal in front of myself, and that goal was to never feel like this again. I am pleased to tell you that not only did I achieve that goal, I surpassed it! Over the past year, Ive gotten invaluable opportunities like heading to Portland Maine to northeastern university’s roux institute to learn how to be a successful entrepreneur, applied that knowledge gained in Johns Hopkins university’s Summer business academy, received a highly competitive spot in Chase bank’s advancing black pathways internship, and finally, being a part of an exclusive group of highly accomplished college students who happen to have a disability in the lime connect fellowship, and even got accepted into the university that denied me 2 years ago. This year is an allegory for my life. I started from the bottom, and now I’m here. I climbed mountains, and crossed canyons. I learned that everything isn’t my fault, and I conquered the purgatory of negative thoughts I had about myself. I finally got medicated for ADHD, found out that I’m not only bisexual, but Non-Binary and now I am more prepared for my next phase of my journey, which is being there for my community, and making sure that any black kid in the slump that I was in knows that they aren’t alone. That a life of tragedy, sacrifice, and self-loathing can be turned into something positive.
How I came to learn about Autism
Growing up middle class in East Africa was itself an experience. I don’t remember learning about neurodivergence in class, however, that could be because I was in the lower classes and maybe the school system didn’t think that we needed to know about autism and such. I learned about many neurodivergent disorders much later in American high schools. In Tanzania, if a kid is acting strange or out of the norm, people would just say “oh that kid is crazy!” or sometimes they would say “he is not receiving proper care from his parents.” Never once have I heard someone say “oh maybe that kid has a disorder or neurodivergent.” Now that I’m looking back, a lot of those “crazy” kids in my childhood probably fell somewhere in the autism spectrum, they just never had someone to diagnose them.
I grew up in a very religious family, I attended a Christian boarding school for 4 years. I remember one time at school, a kid was talking to himself and he would display multiple personalities. When the students saw that, they reported him to the matron and as soon as she saw the student, her first reaction was to pray for him believing that he is possessed by some evil spirits. Again looking back, that kid should have probably been diagnosed with some neurodivergent disorder but instead, we just kept treating him like he was possessing demons. This blog is just to show that education in neurodivergence and autism is highly needed because people are out there getting sprayed with holy water instead of receiving medical care that is highly needed.
Learning about mental health and neurodivergence has opened my eyes because I now know why some people act the way they do. I am judging people less, and most of the time I don’t really care. We all have some form of mental issues; some people are just really good at suppressing them, and some people are terrible at it.
Inclusiveness on College Campuses
Colleges are always talking about how they strive for inclusivity and diversity. From my perspective, a lot has been done to make campuses more accessible to a lot more people, but there are still many changes that could be easily implemented to make college a more attainable place for more people. Looking at UMBC specifically, ramps have been added to different parts of campus, a lot of the big buildings have elevators, there are lots of accessible doors and bathroom stalls, and there are some accessible dorms on campus. I have also seen sign language interpreters in some of my lectures, and there is the Students Disability Services to make accommodations for students or help get them notes for class. While all of this is great for many students, this still makes the parts of campus that are accessible very limited. A lot more still needs to be done in order for UMBC to be a truly inclusive place. Many classrooms or lecture halls don’t have space for wheelchairs, lots of professors do not give much or any flexibility to students who need more time to complete assignments, and much of the campus is made up of hills with no way to get around them. There are probably many more things that I have not noticed as a person without any disabilities that exclude people with disabilities around campus. For that same reason, there are probably more accommodations that are available around UMBC that I don’t even know about. Although, this does show a flaw in the school that they are not making this information known for all students. Some more things that could be done to make UMBC more inclusive would be to have a more flexible attendance policy, make technology such as talking calculators or text-to-speech systems more available to students, and making sure that things that are already implemented on campus are maintained and kept up to date. Disability justice movements, like the one shown in the documentary Crip Camp, are a great way to help get a point across about what needs to be done at an institutional level. More people need to learn about what it is like to live with a disability in a world that isolates them because of it. Although, these kinds of accommodations and services should be provided to people without them having to prove themselves to other groups of people.
Ain’t it ironic
Perhaps the greatest irony behind ADHD is that in order for the world to give accommodations to you, you have to pass through approximately ten billion hoops that you are just less capable of passing through. I have major issues with executive function, and it is precisely these skills which I need in order to get accommodations.
You can’t just request accommodations or medication on demand. There is massive fear that someone “unworthy” might get extra time on a test or more flexible deadlines. With medicine its more understandable perhaps as amphetamines are pretty serious drugs, but the process still fucking sucks even when you consider all that.
Currently I’m on Medicaid and am served by Kaiser for most of my medical stuff. That was a pain in the ass as it forced me off a lot of my old doctors, but there was in theory a benefit to this. All my care was supposedly centralized in one place. In reality, for whatever reason, psychiatry is different because Medicaid rules apparently so now I have to get care outside of it, and have to look and find a new psychiatrist who accepts Medicaid.
I can’t just present my old diagnosis once I get to a psychiatrist because quite frankly my record keeping is kinda crap (my bad, but like this is due to my ADHD). For some reason, I have to know everything and there is no govt centralized record keeping. I don’t remember my old psychiatrists office so like I’m screwed. This adds to more delays as I would have to get tested.
Even once I would get a new diagnosis, I wouldn’t even likely get meds which I know would improve my functionality. I might be able to get accommodations for school at least, but that adds another point of friction, the School. Its yet another bureaucracy that I have to navigate. And of course, when I leave school, I will have a new point of friction, i.e Work. Especially earlier on, I am terrified of asking for accommodations because its much easier to get retaliated against in a workplace.
Each new point of friction adds more and more difficulty. I have trouble managing my appointments, dates, homework, projects, life, friends and all this just adds up more and more. With so many points of friction, its almost like you have to be well organized. There is much bureaucracy, so many appointments you have to make on time, so much you have to get right.
Is it a wonder that I give up before I even try. I can tread water as I am. I don’t want to exhaust myself and drown.
“Learning About Autism”
The first time I learned about Autism was when I first watched tik toks about it. It first came up on my for you page of educatinal facts about what autism is. As I learned more about it I thought of how odd it was that I didn’t know more about this before. Soon after “Love on the Spectrum” came out and watching the show I thought it was interesting of how the show was. I don’t think I’ve ever seen a show before it was nice to see a positive change (yet now hearing others opinions of the show I think I want to education myself more about representation in media). I feel like representations and sharing voices of those in the community is extremely important and learning about this in our class discussion fully proves that.
A More Patient World
I think that a lot of why people who are neurodivergent can struggle socially is because societal expectations don’t really leave room for patience. For instance, in my high school, there was a magnet program for kids who were deemed above average academically. This was measured through a PSAT score and GPA in middle school. This magnet program had specialized courses for the students in it, and because of this, a lot of our classes were just the same like, 100 people as opposed to like the whole student body of around 2000 people. Because of this, we all at the very least knew of each other. During Sophomore year, someone transferred into the magnet program and nobody really knew her that well. After a while, people in this small magnet program made friend groups within it, and never really ventured out of them. This left the transfer kind of isolated. She tried to talk to people where she could, but people would always give her a face that said “Why are you talking to me?”. She never really picked up on this, and she developed a reputation for being kind of weird. Nobody really knew what her deal was, and nobody really gave her much of a chance to find out. For a while, I didn’t either. I ended up only talking to her because was sitting in a part of the classroom where seats were less cramped and I decided to sit next to her. After a while, I realized that we had a lot in common, and we quickly became friends. (We were both the “weird kid”, but I was just more quiet.) Even now she’s one of the few people that I stay in touch with from high school. After a while, I learned that she had ADHD, and realized she never really got a fair chance to socialize with people partly because of it. I think that if more people were willing to give the “weird kid” a chance, things would probably be drastically different for her, and many other people that are in her situation, neurodivergent or not.
Disability: What is it?
Is disability truly disabling? Is it something that our society has deemed a burden? Because when I hear, and frankly the experiences that I have witnessed, of disability, one of the things that I haven’t seen in our times is the ability to communicate exactly how disabling it is to be labeled as disabled. We focused on the studies of disability, disability justice movements, and a host of other things that affect those that have been diagnosed with visible and invisible disabilities. This blog will be more personal for me and as I share some of my deepest moments, the main takeaway that I want you to receive from this blog post is to continue to stay positive – to make a change for those that you may never encounter, but that might need your voice, words, actions or even kindness.
Over the last few weeks, we have studied a range of topics from Stigma and illness to Autism and Neurodivergence. Sadly, I have experienced a new understanding of disability as of late. My brother recently had some health implications and has suffered from a major debilitating event that has left him with a type of impairment. It sucks. Nah, that doesn’t describe it well. It. Fucking. Sucks. I can’t make that up and act like it doesn’t because all I can remember is an annoying younger brother. Granted, he’s still annoying (lol) but it’s different from our childhood and his diagnosis has taken a toll on our family. I am grateful that he is still around, don’t get it twisted. I just know that he’s changed; I would argue that it may have been for the better… I shared this with you for a multitude of reasons, but the biggest one is to inspire you to make a change.
Within the disability justice movement, there are active movements that focus on actionable attempts to support those people with a disability. I think the most noticeable changes we have seen over the last 20-30 years would be the implementation of accessible sidewalks, wheelchair access, and even brail lettering for those with vision impairments. I think this shows that our society is moving towards a more positive environment and losing the influence of the social model of disability. In return, I challenge the reader to take a step to aid someone with a disability. Be kind to those that you meet. Advocate for some type of change in your realm of living that could positively influence those that have some version of impairment. Connect, talk, and be with someone that may be dealing with something you have ZERO knowledge about. Those moments might save their life and give them a greater sense of purpose.
Do you think your smart?
Having dyslexia has been a lifelong weight on my shoulders. Growing up, I felt ashamed and embarrassed that I was a special-needs kid. I thought I did not belong in regular classes because the other kids were more intelligent than me. As I grew up, I realized I was just remarkable and needed help reading. Reading is the key to almost everything; without knowing to read, it is impossible to do everyday activities such as grocery shopping, specifically reading the labels. I remember I was in the fourth grade and learning to read with a co-ed teacher in the hall outside my classroom. Whenever another kid would walk past, they would stare at me. At the moment, I felt ashamed I was seen as a kid reading kindergarten-level books in fourth grade. Other kids were reading Harry Potter books with at least 200 pages, whereas I was reading green eggs and ham by doctor Seuss. I think back to those memories all the time, especially at my all-time lows in life when I get bad grades. I often feel that I am a C+ student because I am dyslexic. Remembering those times hurts me; I even shed a tear once in a while. When I look back on my early education days, there were never any classes geared toward people with dyslexia, or even special tutoring or after-school help. The education systems lacks the understanding to help different types of students succeed in school. Which later can affect their mental health. I hope the school system changes as the number of dyslexic students increases.
Body Over Mind? Or the Other Way Around?
I remember talking in class about how in society we tend to value “mind” over “body” more and how confused I was. I understood the pretext, and the dichotomy between logic and emotion – yet, I felt as if my story didn’t fit this narrative. You see, growing up in a conservative Middle Eastern household meant we didn’t talk about these things. The thought of someone in my family having a mental illness was without a doubt out of the question, according to my father. But why was this stigma wrapped around our minds and not our bodies? Why is it okay then to go get a standard physical but an outrage to talk to a therapist? This is the stubborn mentality that harms communities and will only continue to fester unless there is some clear dialogue put into place. According to Erving Goffman, stigma is defined as the “process at which the reaction of others spoils normal identity” – but I think under my father’s stoicism is a little boy who longs for help yet is too afraid. Too afraid to be seen any different that what he is – the strong provider for his family. But who is going to provide for him? These questions flood my head constantly and I think it’s extremely important to have these conversations, because it certainly isn’t weak to talk about mental health. It’s weak not to.
Unruly Bodies 