A forgotten minority
I have dealt with my disability my entire life, but I didn’t know I was a minority until I stepped onto the UCLA campus. In 2018, students with disabilities are still an afterthought or – more often than not – aren’t even thought of at all.
When I was born, I was diagnosed with caudal regression syndrome, a congenital disorder that causes abnormal fetal development of the lower spine. The chance of being born with it is 1 in 25,000. Its effects vary from person to person, but in my case, it affects my nerves from the waist down. I don’t have calf muscles, and doctors told my parents I would never walk. Thankfully, I can walk, but it’s very painful. My ankles are fused, so I had to develop my own way of walking, turning my right foot out with every step, which creates a fairly obvious limp. As part of my caudal regression syndrome, I also have scoliosis and kyphosis, meaning my spine is shaped like an S and a C. I was born with one kidney, and when I was young it functioned perfectly, but now it is the main focus of my surgeries and hospitalizations. My kidney is currently so swollen that doctors are shocked when they see it in scans.
I’ve had more than 40 surgeries, 10 of which have been during my two years at UCLA. I take 20 medications every day, live in constant pain and work to have the best attitude in some of the worst situations. When I have a big assignment due, I start work immediately because I never know if I will end the day in the emergency room.
I often end up in tears when I stop to think about what I have to face, day after day, on top of the rigorous academics of UCLA. But instead, I try to focus on how this experience will make me a stronger and better person.
Last quarter, I had four surgeries and missed five weeks of class. It seems impossible to succeed in a situation like that, especially with UCLA’s 10-week quarter system. It’s hard to stay afloat in a university system that wasn’t built for me, and I’m going to try my best to show the perspective of a student with disabilities at UCLA.
Daily college life:
It’s the first day of classes. At the end of each class, I walk up to my professors and teaching assistants to introduce myself.
“Hi, my name is Remington Lee and I just want to let you know that I’m often hospitalized and have to go in for emergency surgery. I will do everything I can to succeed in this class, and I hope that you will work with me.”
When I approach them, I get knots in my stomach because I don’t know how they will respond. If a professor seems annoyed or looks like they don’t care, I know that communication is going to be difficult, and they most likely won’t be willing to work with me.
If they react negatively, I go to the Center for Accessible Education. CAE’s staff sends them a note verifying medical issues and tries to work out a system between the professor and the student, but that can only accomplish so much if the professor isn’t willing to accommodate me.
I feel professors paint me as a slacker for missing classes, which is tough to accept since I want nothing more than to be able to leave my bed. They might think I’m trying to trick the system when I’m just trying to stay afloat.
Sometimes professors can’t comprehend that someone can be in such poor medical condition and still be at college. They suggest I take a year off, rest more and focus on my health. But it doesn’t matter if I take a year off; I will still have the same issues next year.
I try my hardest to attend lectures, but oftentimes it doesn’t work out that way. During winter quarter, I was trapped in my dorm for four weeks because my kidney issues made me incredibly weak and caused constant, excruciating pain. I couldn’t get food or go to class. All I could do was work from my dorm and hope the next day would be better.
While many students have to talk themselves into getting out of bed every day, all I want is to be able to make it to class and interact with people.
As a student at UCLA, my studies often overshadow the state of my health. If I focused on my health, I would have to be at home instead, taking time off.
Students with disabilities have to overcome hurdles just to get an assignment in on time, but we do it because we care about our futures and don’t want people assuming our disabilities prohibit us from accomplishing things in life.
Fortunately, I have found support in my friends and family, and an emotional support cat named Wally who helps me get through tough medical periods and daily life at UCLA. My mom often drives three hours from Fresno, California, to help me out at school. She wants to make sure I’m staying on top of things, not falling behind or giving up, which sometimes seems like the easiest answer. I love going to Disneyland and getting out of my dorm when I have the energy. I also have a minor – actually, a major – obsession with makeup; I’m a campus ambassador for Beauty Bakerie, one of my favorite brands. All of this is a part of who I am as a student at UCLA who is disabled. I know I’m not alone in these struggles, and that compels me to use my voice to speak for students with similar experiences and to educate anyone who is willing to listen. This is a story for everyone.
Dating and Disabled
For me, dating doesn’t happen. I’ve asked guys out, and have been turned down. I’m 20 years old and have never been hit on, never had my first kiss and never been on a date. Last year, there was a guy in my dorm I developed a crush on. We always left for class at the same time, and I got to know him during our short walks. He was kind to me and made eye contact as he asked me how my day was. He told me I looked nice and we would make small talk before we went our separate ways on campus.
One day, he looked at my legs and his tone changed. He asked me why I had a limp. I tried to play it cool and not make it a big deal.
“Oh, it’s just something I have. I’m okay, though,” I said.
From that moment on, he never talked to me again. I saw him just as much as I did before, but the eye contact and cute small talk stopped.
My limp seemed to make me unattractive to him, and this is the story of my life when it comes to dating. I assume all guys write me off because of physical differences. While I would love to have a boyfriend, it’s really hard for people to appreciate someone for who they are as a person and not focus on how they look.
The Elevator Stigma
Taking the elevator up or down one floor might seem like an act of laziness to able-bodied people, but to me, it’s a necessity. Unfortunately, that doesn’t stop the rude whispers or off-handed remarks. I’ve heard the occasional, “One floor, really?” or, “Ugh.” Once, a woman looked at me with a facial expression that implied, “How could you be so selfish?” before she reminded me the stairs were right there.
Because I don’t always use an assistive device, like a walker, it’s not completely obvious that I have a disability. I’ve even gone so far as to apologize to people because I do not want to be seen as a bad or lazy person. I can’t put into words how horrible it is to feel like you are an inconvenience to those around you.
The height of ableism at UCLA is making people with disabilities feel like they need to apologize when using the elevator to avoid rude comments and glares.
Why I Hate Using My Assistive Devices
Students have a weird habit of avoiding eye contact when they see someone with an assistive device, whether it’s a walker, wheelchair, scooter or crutches.
People with disabilities use assistive devices to achieve as normal a life as possible. Most days, I don’t need my wheelchair or walker because I have my car to get to class. But more recently, as my health has deteriorated, I need it just to leave my dorm to get food.
The same people who say “hello” to me without my walker won’t even make eye contact when I’m using it. I know it’s because they feel uncomfortable and they don’t want to seem rude for staring, but it’s actually worse for someone to deliberately avoid eye contact. It makes me feel like I’m not human and at times it makes me feel invisible. I know no one intends to be hurtful, but a smile or nod would feel less isolating.
When I’m in a lot of pain or feeling incredibly weak, I need to use a walker. My walker allows me to function on the hard days, but I feel like I’m a different person when I use it. People who don’t react to my limp seem to see me differently when I use my walker. I went to UCLA New Student Orientation a few weeks after a two-month stay in the hospital, and refused to take my walker because of the attached stigma. I’ve used the device on and off all my life, and I’ve seen the stigma that comes with it and how people treat me differently. So I let the possible judgement of people I have never met mess with my orientation experience.
One day during orientation, students were invited to go to a club karaoke night at Jamba Juice on campus. But I was tired, so told them I was just going to head back. I stared at the Hill, knowing I wouldn’t be able to make it all the way up. I called the Community Service Officer van, the service that helps students get around, only to be told that the van didn’t run during the summer.
I started crying, just begging over the phone for someone to help me and take me up. I didn’t know what to do. I was alone on a giant campus, feeling more disabled than I had ever felt in my life. A police officer ended up giving me a ride back to my dorm. I got back and cried and wondered if I belonged, or if I would actually be able to make it in a place like this.
How to Help
There’s a part of me that knows that the general population wants to learn how to help, but doesn’t know how. Here’s how you can make a difference.
Work with us. Understand that CAE cannot solve every problem. Professors can help find an answer to the issue by talking to us and listening. One line on a syllabus advising we go to CAE is not enough. CAE is amazing, but it’s even more amazing when a professor will sit down with me, listen and try their best to understand.
Speak up. When someone is talking about student issues without even mentioning students with disabilities, add us to the conversation. We deserve to be recognized and included in campus choices that are supposed to help students. People with disabilities want to be a part of the conversation, so let us help in the effort to make UCLA a more accessible place.
Don’t judge. Just because someone appears to be physically fine does not mean they are able-bodied. If someone takes the elevator for one floor, do not lecture them, roll your eyes or make a snide remark under your breath. You don’t know what other people are going through and you shouldn’t pretend to.
Listen. Listen to our issues and talk to us. Make eye contact and be kind. Don’t talk down to us and don’t treat us differently. We are human, we are students and we just want to be included – and very rarely are. Many of us want to tell our stories and hear about yours. I’m very open about my issues and want people to ask me questions. People with disabilities don’t all have the same issues. We are unique individuals with a perspective on life that will impact your outlook on life.
I know the world isn’t working against me or other students with disabilities, and the majority of people care and want to help. However, I’m writing this because I feel that students with disabilities are often an afterthought. I’m writing this because I want to give people the tools they need to help make sure that students with disabilities are included in the conversation about how we can make college campuses a better place for everyone.
Know we are capable of anything we set our minds to. Take time to think about us and our issues – and make sure we are included.