INTERVIEWS BY KRISHNA NAIK
PHOTOGRAPHY BY RACHEL GORDON
This is something that I really don’t talk about with people. It’s something that I suppress from those around me and from myself. As I share, I remind others that I speak about my story and not that of other people with Asperger’s, which is a developmental disorder that falls within the Autism spectrum.
I was diagnosed when I was 7 years old and for me, it has been my only reality. My earliest memory is from elementary school, when I was placed in special needs programs and felt blatantly different. I wasn’t given the same respect as other students and in turn, reacted with violence. Based on my actions, many teachers thought that by the age of 18 or even before that, I would be institutionalized. They thought I wouldn’t be able to function within society.
Because I wasn’t able develop on my own, I had to develop in the style of those around me. Imagine being made fun of by the same people you were trying to be like. I had to grow up and mature a lot quicker than others. I don’t feel like I have stability. The smallest moments can turn into large meltdowns. The last one that was really bad was last semester. I thought I hadn’t gotten the required score to stay in my major and remember knocking things over, punching walls, and yelling. I think I even made a dent in the door.
My parents decided to raise me outside of my disorder. Even though it is very unconventional, I didn’t taking any medications growing up. Looking back, I think it was a really, really good decision. It gave me the opportunity to see myself beyond my disability and to find my individual strengths. However, I was always told to hide my disability and to not let it affect me. My parents’ lack of recognition left me feeling ashamed. I was taught to never mention it.
As I grew up, I got better at the game. I saw that people liked me when I was funny, so I entertained their humor and became witty. I guess I was just trying to survive. However, my need to think cognitively and logically is still a barrier. It makes being empathetic harder because I process things differently. It’s hard for me to think emotionally and socially. For example, things like sarcasm. If someone says, “Get out of here,” I will take it literally. I feel very othered because I don’t follow societal norms or what “normal” people always do. Because of this, I isolate myself.
Most people don’t even know that I have Asperger’s and even if I bring it up, it’s in a very light-hearted way. It leaves room for a lot of ambiguity. I want to change people’s understanding of Asperger’s. I want people to be more accepting. I want resources to be more accessible. I want people to find the power in allyship.
I am on the spectrum for autism. I was diagnosed at 3 years old and was nonverbal and unresponsive at the time. Each week, I would have 40 hours of occupational and speech therapy around the clock. Things began to change when I turned 8 and was able to get more mainstream support and eventually, during my time in high school, I was able to limit the services I needed.
There have been times when my disability leaves me feeling like a second class citizen due to a lack of certain social skills. Thankfully, because of my involvement in theater and music, I have been able to get strong individual attention at this school. While there are times when I feel I am socially rejected or lack a sense of space, I am grateful to be here and to be able to represent the autism community.
Often, I feel challenged. Because of the lack of diversity and sensitivity training of our campus representatives, I feel distanced from campus life and certain opportunities. Today, there are only 35 students on this campus who are on the spectrum and are registered within the system. This creates an overall lack of respect and understanding of autism. Even when people do discuss autism on campus, it’s usually in regards to research and young children. However, they forget that there are students here who are still affected.
There also aren’t enough students who are vocalizing what they are experiencing. Still, I get that they may not be there emotionally yet. Students are still suffering and I feel like we never pay attention to them. At the same time, people at UF should still treat us human beings and try to find the positives and strengths within us.
While there is an autism support group, it is located on the east side of campus. A place few students know about, let alone visit. On top of that, they only meet once a week and unfortunately meet at times that are not accommodating for all. It almost feels like people on the spectrum are being physically isolated.
For the future of our campus, I hope to see a greater sense of community for not only people on the spectrum but also for those with disabilities. We have BSU, ISA, PSU, etc. yet lack a space for persons with disabilities. 1 in 5 people have a disability and we have almost no representation.
I have Tourette Syndrome. The version of the disorder I have is relatively mild. To explain, Tourette is a central nervous system disorder that affects your motor and vocal systems. Many of the symptoms can morph into other symptoms such as OCD.
I was diagnosed when I was 6, but I can’t even recall the diagnosis because it just phased its way into my life. I remember when I was younger, I would make a lot of involuntary high pitched noises… every time one would make its way out of my windpipe, which was fairly often, I would apologize. Much like when you say “excuse me” after you sneeze. It was when my best friend came up to me and said, “Stop apologizing for who you are,” that I realized how tiring it was to apologize. I eventually stopped apologizing to the world but it took a few more years to stop apologizing to myself.
During my senior year of high school, I shared my experience with Tourette Syndrome in my school newspaper. It was a huge step for me because nobody really knew about my disorder. I stopped talking about it as much because I learned how to control it better. This was important to me because it was literal self-control. Fighting against your own central nervous system isn’t easy and is extremely tiring. The hardest part is always telling people about it. In elementary school, due to my 401, teachers always told the class for me, but now, in college, I have to muster up the courage each time to tell people what my story is. It’s getting more familiar to me and now, thinking about the future, I think I would want to be an advocate for people with such syndromes because I shut it out for such a large part of my life. I didn’t realize that people with more serious forms of my condition may not even have the means to speak on their behalf. Considering that made me realize my privilege.
It has put my family through a certain amount of strain. When I go home, my tics do tend to get worse because I let go of some of that self-control. It puts pressure on them and me because the tics can get worse with emotional and academic stress. I try not to worry too much about things, but it’s kind of unavoidable because it’s kind of my second nature. Thankfully, my family and friends have been very supportive and accepting of my disorder.
I hope in the future, we can see change. There are some social media stars that pretend they have Tourette syndrome just to get a laugh or views when they have such a large platform to promote change. I wish society could see Tourette beyond a pigeon-holed view and rather as the broad spectrum that it is.
I have never spoken about this to anybody. I suppose I keep it very private because I don’t want to be reduced to only my disorder and also because my chronic illness hasn’t been diagnosed yet. I’m kind of a medical mystery and have been for the past 7 years.
Basically, I suffer from muscle problems that affect everything from my digestive system to my heart. What that means is that the basic functions of certain systems don’t really work properly for me. So, I am in pain 24/7. Last semester, I was sent to the ER where they almost had to stop my heart. Although that was probably one of the more extreme scenarios, it is my reality.
This all started when I was 13 and it was really rough on my family. I was in the hospital all the time and I would come home from school and not move for almost 12 hours. It was hard on them because we are so close, and seeing me in pain hurt them, but they remain my constant support system. Last semester, I had to withdraw from a class. Thankfully, they were all so positive and supportive, and were there to pick me back up.
In terms of friends, I don’t really talk about it. My close friends only know because of emergencies. It’s hard to explain it to others because you can’t just google what I’m suffering from. Most likely it will be determined that I have muscle damage…I guess I can say that now, but I couldn’t for the majority of my life.
People say to me, “Wow, you have the worst life.” I hate that. First, I don’t. Second, why would you ever say that to someone? Most comments are in a similar fashion. Sometimes I’ve even gotten this: “If I was in your shoes, I would have killed myself.” That’s just not okay. Yes, it’s a terrible thing I am going through, and each day truly is a big struggle, but there are other facets of my life. Like wanting to be a veterinarian and my passion for Shakespeare. Looking at a disorder as wholly terrible takes away from the humanity of a person.
I’m very self-conscious about coming off as I’m slacking off, especially because I do keep it private. If my memory is just not good that day, I don’t want it to seem like I’m not trying. There are also additional barriers, because my illness is invisible. People don’t understand what you’re thinking and going through, so it’s hard for them to understand that it’s not a one-time thing. It’s 24 hours and every second. It’s not a choice, it’s just my life.
Although the Disability Resource Center has been resourceful, the process and paperwork has been tedious and slow going. For me, it’s just another burden on top of everything. However, despite it all, I try not to pity myself and I don’t want other people to either. I want to achieve the same dreams I had 10 years ago, and if that means it will take twice as long to get there, I’m okay with it.
To begin with, this isn’t my story to tell. But it is my grandfather’s. My grandfather has had chronic depression since retirement, which was about 10-15 years ago. Recently, he was also diagnosed with Parkinson’s disease and an onset of dementia.
Seeing my grandfather transform from the strong willed and opinionated person he was to someone who now struggles to make eye contact and can’t express himself has been the hardest thing I have experienced. He is not only debilitated by what he is undergoing, but also by the way people treat him. He already has his own struggles, something within him that he can’t control. People should realize that they can control how they treat him.
I remember being at a family friend’s house and asking my grandfather (‘dada’ in Hindi) if he wanted tea. I started asking how much sugar he wanted and describing what I was doing because he enjoys details. Soon enough, adults passed by expressing shock towards how kind I was being in a manner that made the act bigger than it really was. Yes, he has changed, but he can still hear you and still internalizes what you are saying. Disabilities should just be another identity. A unique characteristic.
There is no cure to Parkinson’s or dementia in the realm of science; however, something that does help is a stimulating environment. How can we provide such an environment when there is limited discussion on disabilities? Don’t get me wrong — I do believe that people are good hearted and have decent intentions. It’s just that, as a society, we lack so much understanding that our good intentions often suppress others. Because of this, my grandfather pulls away from society and lacks stimulation.
When he was initially diagnosed, I withdrew. I lost the human feeling due to the title of a disease. It was a couple years ago, when my grandfather was really starting to get affected by his disease, that I started to open up to him. Within the past year, he has probably smiled once but when he did smile, I saw him. I remember thinking, “That’s my grandfather. He’s still there.”
It’s interesting to see how people treat my grandfather in terms of his age. Although he has lived a long and fulfilling life, there shouldn’t be certain ages associated with certain qualities of life. It’s been shown that the last few years and even moments of your life are what you leave with. Decades of jovial memories can be lost within a few years of pain. If you’re sitting alone in the corner and nobody gives you human interaction beyond a hesitant “hello,” you’re going to leave with those feelings.
There is so much empathy needed to be an ally to someone dealing with these illnesses. There is also a lot of pain. Initially, I was selfish and didn’t want to feel that pain. It was when I recognized that my anger towards his circumstance had overshadowed my love for him that I began to rediscover the wonderful parts of my grandfather.
I was born with a condition called tetralogy of fallot, which is basically a congenital heart defect that has required two open heart surgeries thus far and will require more in the future. Along with this defect, I also have several other disorders. To name just one, I have polysplenia with heterotaxy syndrome, which means I have multiple spleens and that my organs don’t function properly. I have had a total of 7 surgeries throughout my life so far, maybe more, and take 8-9 medications per day.
Due to my compromised immune system, I used to get sick very easily during my childhood. I didn’t go to preschool and rarely went to elementary school. I spent much of my time in the hospital and have had numerous hospital stays. Eventually, I began homeschooling which took away the quintessential childhood that most are privileged to have. My reality was staying home and being watched over by my grandparents and brothers as my parents spent their days working.
In sixth grade, my heart started failing again, leaving me completely wheelchair-bound. I remember hearing parents telling their kids not to hang out with me because I was always sick and the stares I received whenever I was in public. I didn’t have a broken bone or anything people could visibly justify, so I would constantly have to explain my invisible disability. I had to learn how to respond to judgement and pre-conceived notions early on in my life.
Growing up as an Indian-American and Hindu with a disability, I have been surrounded by problematic logic. I have heard comments saying that I must have done something wrong in my previous life to deserve my disability or even just assumptions that I can’t do much. Whether it’s working towards a degree or living away from home, people are constantly surprised by what I do. These reactions were large motivators for me to come to the University of Florida, because I wanted to prove that I was more than what they labeled me as.
Coming here was definitely a culture shock because I lacked the support system I had at home. My mom was the one who took care of my medications, doctor’s appointments, etc., but now, it was ALL my responsibility. Back in high school, my teachers knew what I was going through and there were less explanations that had to be given. But here, I was constantly advocating for myself, and that’s when the Disability Resource Center really helped. Not only did they provide accommodations for my academic success, but they also served as a support system, to a certain extent.
Since day one, my confidence has always been shattered. I’ve constantly been told that I couldn’t do things, and it has made me very insecure. Building that confidence is my biggest struggle, and you need a lot of support to build that back up.
When I came to UF, I wanted a home that I would be able to connect to. I found that while other minority groups have communities, disabilities is one that lacks a space. Although we have the DRC, their main goal is to facilitate learning, not conversation on our lived experiences.
This sense of community and advocacy is something I have been working towards since I got to the University. I find that the mindset of students and faculty regarding disabilities is still confined to physical disabilities, and that there is little knowledge regarding the large spectrum of disabilities that exists.
I didn’t know I was a DRC student until I was failing a class in the fall of my freshman year. I’m not particularly familiar with failing school classes. In the past, I had to work harder than others, but this was the first time in my life that hard work and perseverance weren’t working. It was scary. I thought, “What is wrong with me?” There goes becoming a physical therapist. There goes my college degree. I remember watching all my dreams starting to crumble. It was one of those experiences where you feel ashamed because you just feel stupid.
I was at office hours so often that I was basically having my own office hours. However, when it came to the exam, it didn’t work. Eventually, my professor asked me whether I had looked into having a potential learning difference. She directed me to the DRC, and they were a great resource who set me up with accommodations. During the time when all of this was happened, it was still hard. I had failed an exam and I didn’t even feel as if I could go home because all the girls on my floor were taking the same class. They would all talk about how their exams went and I couldn’t help but notice how much better they were all doing in the class. They knew how much work I put in and how much it meant to me. It was embarrassing to work so hard and not earn the equivalent grade.
It wasn’t the first time I hadn’t succeeded, but it was the first time that I couldn’t make it work. I was the kid at soccer practice who had to have things explained 3 times instead of the 2 times for everyone else. It never bothered me because I had the confidence and ability to outperform the rest of my team through passion and dedication. When these efforts stopped working, I felt lost.
Not going to lie, when you enter the DRC, you don’t read DRC. You read Disability Resource Center. You already walk in with low esteem and then the word disability gets thrown at you and it just throws you off. Once I started getting accommodations, things changed. My next door neighbor, who also received accommodations, became an amazing support system and coach to guide me towards being okay with my difference.
At this point in the class, I just wanted to pass. The final was approaching, and the day before the exam, I woke up horribly sick and went to see my professor at office hours. My professor saw the state I was in, and recommended that I take the final another day; however, I refused. I had come so far to not take this exam. The next day, I took the exam and for the first time, I didn’t go on a bench after the exam and cry. Instead, I met up with my friends and we joked and laughed about the exam being over. Soon enough, I was sitting with my dorm friends, ready to check my grade and no longer embarrassed of my difference. I checked my grade…and then checked again. I earned a perfect score on the exam and an “A” in the class. I truly cannot remember a time where I felt more joy and relief.
That’s when I realized that whatever I was going through wasn’t a bad thing. It was just part of who I am. The next day, I went to go see my professor. Before I even walked in, I heard, “Erin Waterman, I have never seen a student do what you have done.” I just smiled, with tears in my eyes. She believed in me when I didn’t believe in myself, and I think it speaks a lot about the community we have here at the University of Florida. We take each other as we are and support one another.
For students to be successful, I believe they have to be self-advocates. Self-advocacy means accepting yourself as you are and not being offended by what others may see you as. The word disability doesn’t offend me anymore. I am disabled, and it does take me longer to process things, but I do have a lot of other abilities.
Consider opening a door. Can everyone do that? It sounds small, but it really isn’t. Accessibility is still a problem and not everyone understands that. For this reason, we try to speak about these issues as diversity instead of disabilities. It’s just a matter of creating access to all types of diversity. We’re not there yet, but I have confidence that we can be.