// Reshaping the Bell Jar Essay Series

I remember the first time I ever felt some sort of emotional and physical difference between myself and the others around me. I was five-years-old and in kindergarten. I was crying in the hallway because the other kids could walk and I couldn’t. I knew I had cerebral palsy, but at five-years-old, I couldn’t explain it. It was just my personal care aid and me in the hallway at the time, and we had a ways to go before we reached the classroom. I remember she stopped pushing my chair and came around in front of me. She crouched down to my level and started to talk to me. I don’t remember what she said, but I remember the look in her eyes. She was gentle and gracious with her empathy; by the time we got back to the classroom I was no longer upset.  Little did I know that that would be the start of what I now call my “emotional undoing.”  It wouldn’t be the last time that kind of crying happened.

When I was 11, I realized I was gay. To complicate things, I lived in Alabama and had actual friends for the first time in my life. From ages seven to eleven, I didn’t have many friends. There was something about me, presumably the wheelchair, which kept other kids from wanting to befriend me. All of these things were internalized and I never actually dealt with these issues. My crying episodes began while living in Alabama, ignited by the realization that not only was I a lesbian (I prefer “queer” now), but I realized what it meant to bethe only person in my family with a disability. I hated it, and in truth I hated myself. I could be okay with being attracted to women because in my head there was nothing wrong with that, but there was absolutely something wrong with being in a wheelchair. I couldn’t stand it and any time I was reminded of my differences, I got really upset and would wonder why I couldn’t be “normal.” I would be confronted with not being able to get into a building and my self-esteem tank. I would do my best not to express any emotion in front of others, but I knew my face showed it. I would wait until I was in bed, in the dark, and cry until my eyes hurt. Everyone had to do everything for me: dress me, cook for me, and bathe me.  Anytime I needed something, such as needing help going to the bathroom, my mom would ask, “When are you going to learn to this yourself? I’m not going to do this forever.” I felt like they were blaming me for something that was not my fault. I was frustrated and angry and I thought, “The universe must hate me,” and “I must be an awful person,” but I didn’t express any of this in public or at school. Everyone always told me I was so happy and so positive and such an inspiration. I didn’t want to let people down so I chose to wear a mask.

I wore the mask at home, too. In my family, my emotions weren’t important, valid, or real. Whenever I cried because I did not feel liked or loved, my mother only told me my feelings were bullshit and that if she really didn’t love me, she would’ve put me in a group home long ago.  My habitual, clockwork-like episodes weren’t tolerated. My family did not tolerate sadness. I was told I wasn’t white and needed to just deal with my problems. My family didn’t realize that they had never equipped me with any emotional coping skills, confidence or self-esteem. Here I was, this huge inspiration to able-bodied people, but I was exhausted by the image I had to exude. It was truly destroying me.

When I was 19, I failed out of college. Two weeks after the semester ended, I found myself sitting in a doctor’s office with my mom. A tall, red-headed, white man with glasses asked me how I was feeling. I remember he kicked my mom out of the room and said, “How are you really feeling?” Without fail, I said something to the effect of, “I just want to die.” Those words came to me too easily. It was the most vulnerable truth I had ever told anyone. I had been dealing with these feelings of wanting to die since my junior year of high school. Coming from a black family where I knew mental health was ignored or considered unimportant, it felt good to be honest with someone. The next words that followed were something familiar. He started explaining anti-depressants and said that I was going to be prescribed something called Celexa. When he told me that I’d be taking medicine, I remember thinking to myself,  “Of course I’m depressed, you fucking idiot!” However, I was also relieved. I had been carrying all this pain around for a long time and the people who were supposed to be helping me (teachers, guidance counselors), all attributed the feelings to hormones or suggested I start keeping a diary. The doctor said, “I’m going to prescribe the medication, but I’m going to give you a referral for counseling. The medication helps you, but I believe it’s the counseling that will change your thought process and arm you with coping skills.”

When the appointment was over, my mom told me that she could hear everything we talked about on the other side of the door, but she didn’t really react. I knew that it was because she wasn’t an emotional person, but I still wanted her to express some concern. My entire life I knew that my mom wasn’t affectionate, but she confirmed it when I was 17 and I told her the kind of love I needed (affection, hugs and kisses). She said, “I’m not emotional, I’ve never been emotional, and I’m not going to change because you want me to.” I was heartbroken, but I was grateful I finally knew the truth.

Telling my oldest sister was a much more difficult task. She is 13 years older than me and lives in Maryland. As soon as I told her I was depressed, she was quiet for 30 seconds and then said, “You’re depressed?” I repeated myself and she just let out a heavy sigh. I also ended up telling a few school advisors and some friends. They weren’t surprised but they tried their best to be gentle.

I remember the first time I sat across from my therapist.  She was a petite white woman and I thought, “What the hell could she actually know about being black, gay or disabled?” As my treatments continued, there was part of me that felt that I should be “fixed” by now, but I failed out of school again and was removed from my campus role as a peer mentor to a group of freshman. My advisor felt like I should focus on me. Again, I found myself frustrated and expressed that to my advisor. A light came on (or so I thought).

“You don’t want to do any of the work,” she said, “You’re expecting a quick fix and it doesn’t work that way.”

At this point, I felt like no one understood. I thought that the only way for my depression to go away was to make my cerebral palsy go away, but that was impossible. I was fully convinced that I wouldn’t make it. I was either going to quit school or not live to see my 21st birthday. I felt in competition with my abled-bodied peers and I felt severely behind.  I wasn’t dating and I had never dated. I hadn’t even had a first kiss. I knew it wasn’t entirely my fault though. I was smart enough to know that part of the reason I hadn’t dated yet was because people with disabilities are taught by society that our bodies are undesirable, incapable of beauty, or unlovable. This is not the experience for everyone, but it was my reality and it only led to me feeling worse about being in a chair. I had no job, due to malevolent government rules about disabled people and employment. The rules date back to the 1950s when people with physical disabilities stayed in group homes and weren’t seen in public. The rules state that if you are disabled and received disability and medical insurance from the local/federal government, you are only allowed to have a part time job (defined as 20 hours or less per week). You are also only allowed to keep up to $2,000 total in any bank account in your name, no matter if it’s checking or savings (the Federal government has recently changed this rule to be brought up to current times by passing the ABLE Act, but the enactment of said law is left up to the individual states). If you are to violate either of these rules, your insurance and money will be taken away and the cost of many of the equipment people with disabilities may need (wheelchairs, bath chairs, lifts), aren’t covered by employers.

I couldn’t be financially independent or romantically involved as my peers. I felt as if I had failed. At that time, I viewed everything as either success or failure, black or white.

Then my situation and attitude began to shift in a positive direction. I started doing well in school; I bounced between medication and no medication.  I’d switched to Wellbutrin after my first check up because of some unwanted side effects from Celexa. Wellbutrin worked a bit better, due to a different dosage and didn’t include any physical reactions as Celexa did. Overall, things felt and seemed great and I finally had a good friend on my side. Our friendship was forged because we both had a crush on the same celebrity.  She knew I was queer and disabled and didn’t run away. She was there for all my episodes and extremely, consistently supportive. Things seemed solid in my life. In actuality, I had lost touch of how I felt and was still truly sad. I wasn’t aware of the truth until my friend told me during one of my episodes. She compassionately explained that as much as cared about me, she couldn’t keep repeating herself. She didn’t have all of the answers. I was irritated again and I felt like I was on my own, misunderstood and hurt. Fortunately, her decision combined with her toughness, actually helped. With her help, I realized that I had to deal with my pain on a more consistent, honest basis no matter how scared I was.

I went back on Wellbutrin and back to bi-weekly talk therapy, but this time was different. I started doing the work and I wanted to do so, for me. I became more committed to developing solid coping skills, including but not limited to coloring and journaling. I started sticking with my therapy appointments, which allowed me to talk about my deepest feelings with a qualified person as opposed to my friends who were becoming overloaded with how I felt.

I had to believe in me, no matter how hard other people believed in me. I had to look at failure differently, in addition to my life, my illness and disability. I had to find forgiveness in myself. I had to forgive my family for not understanding and making mistakes. I had to realize that I was much more sensitive than the rest of my family. I’m not saying my disability and the way it attributes to my major depressive disorder don’t still frustrate me, but this shit is hard work. I learned that I don’t like being called an “inspiration” because I’m not. I do the same things as able-bodied people, I just do it sitting down and it takes a little more time. Those posters you see of children in wheelchairs playing basketball with taglines like “you can do it” or “what’s your excuse?” are known to lots of people in wheelchairs as “inspiration porn.” It’s not for us; it’s for able bodied people to feel good about themselves and their situations. It’s complete bullshit. As Stella Young, a disability activist and public speaker, once said in response to a “motivational” poster, “No amount of positivity is going to turn a set of stairs into a ramp.”

When I heard this, I felt that I didn’t have to maintain an image anymore that was completely taxing to my mental health. I felt real weight lift from my shoulders. I could be a person and not an inspiration. I’m not saying that I don’t want to inspire people at all, but if you do find me to be an inspiration it better be about something other than the fact that I’m in a chair and still managed to graduate from college. I want to be inspiring because of how my writing affects the people who read it or because of one of the talks I give about disability and equality. I’m not a figurehead; I don’t speak for an entire community.
People with disabilities aren’t all the same. Nevertheless, I want to make a difference in how parents talk to their children about disability and teach them to do a little bit of unlearning as well. It is my belief that education is the key to ending ignorance so that by the time a little black girl in a wheelchair becomes my age; people won’t find her goals to be inspiring, but just a part of how we all operate our lives.