The last time I felt equal to my peers was during my senior year of high school. This was in 2018. I was eager to go off to college and experience young adulthood. I was accepted to Westfield State University and was excited about attending there. At the time, I had no clue what adults with disabilities have to deal with.
Growing up, society told me that a four-year college degree was necessary to land a job in today’s world. At a meeting during my senior year, this statistic was shown to a group of us during a PowerPoint presentation. “Men with bachelor’s degrees earn approximately $900,000 more in median lifetime earnings than high school graduates. Women with bachelor’s degrees earn $630,000 more”.
I had hopes of going to college every since I was a child. I hoped to pursue a career in medicine. I wanted a job where I could help people like me. I knew how many doctors, personal care assistants, nurses, counselors, and physical therapists had helped me while growing up. I wanted an opportunity to help future generations of disabled children.
At the time, I thought a bachelor’s degree was crucial to my success. I was also told that discrimination against disabled people in the workplace was illegal. I thought it wouldn’t happen to me. When I began applying for jobs I realized that employers do discriminate against people who have disabilities. I have been rejected from movie theaters, grocery stores, retail stores, and many other entry level jobs. I was even turned down for a host job at Applebee’s, and a greeter job at Walmart.
In September of 2018, I went off to college. I wasn’t sure what I wanted to major in. Eventually, I decided to major in communications with hopes of working in journalism or public relations. I enjoyed my first year immensely and did well academically, and was writing for the school newspaper. The summer after my first year, I tried to pursue a work opportunity. The woman who runs it works out of her home, which isn’t accessible. After this, I began to research statistics about those with disabilities in the workforce. The more research I did, the more I wondered if I’d ever get a job. According to the Bureau of Labor Statistics, 19.1% of those with disabilities worked in the United States in 2021. This is a slight increase from 17.9% in 2020. The statistics scared me to death.
Colleges don’t provide a personal care assistant. In my first three semesters of college, I went through a new PCA every semester. It’s exhausting having to find and then retain personal care assistants. Managing your care can feel like an unpaid job. It was hard because my first PCA was constantly running late. This always made me nervous because I didn’t want to miss classes. This PCA sometimes also made me feel like a burden. It’s not a good feeling when your PCA makes you feel bad just for existing in your disabled body. The subsequent PCA worked well until I let her go due to personal issues. The third PCA had unreliable transportation. It wasn’t until 2018 that I discovered just how difficult it could be to find a good PCA.
Additionally, I soon found that obtaining accommodations was difficult. Nothing was simple, from obtaining accommodations on exams to ensuring that I had accessible materials. It took a level of advocacy that I was unfamiliar with. There are several e-mails, forms, and phone conversations involved in the process. There are no IEPs or 504 Plans in college. Because you are treated as an adult, much of the advocacy falls on you. It felt like getting what I needed was a full-time job.
This became even more difficult when Westfield State moved everything online because of COVID-19. I didn’t have the same level of access to the office of disability services. Due to schedule and money concerns, I was forced to miss the autumn semester of this year. Last November, I was looking forward to returning to campus in January. I submitted my application for re-enrolment. I sent an email to my advisor outlining the courses I intended to pursue. She never replied to any of my emails. In late December, I finally met with my advisor via Zoom to confirm my course load.
Nearly a week passed, and I checked my schedule. Much to my dismay, I had never been registered for the full course load. Eventually, my mom called the university and complained. It was only then that I found out that the administrative assistant was out sick, so she never received my advisor’s email to enroll me in the classes we had discussed. I finally gave up my hopes of attending Westfield State. For a university that supposedly has good disability services, I felt let down.
In the summer of last year, I decided to start blogging about my disability. One day I hope to turn writing or blogging into a career. Blogging has allowed me to share my thoughts with people worldwide. Writing is a solitary endeavor, but by sharing my work, I am providing the entire world with a new perspective. Through my blog and social media profiles, I have connected with people with various disabilities. People with physical disabilities, chronic illnesses, and conditions such as depression and anxiety. On social media sites, I realized that I am not alone in this world. Having grown up around few disabled people, it was comforting knowing that there are many other disabled people out there.
Right now, I am focusing on blogging while searching for paid work. I’m also deciding whether or not to return to college. If I do, I want to enjoy it. It’s important to me that I enjoy whatever I do. Blogging has also improved my mental health. I have a hobby that I enjoy again. I haven’t found much joy in the past couple of years. Not being able to experience pleasure has been the most debilitating symptom of depression for me. It’s difficult to enjoy life when you just want to sleep all day long.
I look forward to writing every day. I enjoy writing and editing each blog post. I enjoy getting feedback from my readers. One day, I hope to make a living doing what I love, which is writing. People don’t have to know their career path automatically at 18-years-old. The traditional career path might not be for me after all. That is okay, and we all have our path in life.
Persons with a Disability: Labor Force Characteristics Summary – 2021.” U.S. Bureau of Labor Statistics, U.S. Bureau of Labor Statistics, 24 Feb. 2022, https://www.bls.gov/news.release/disabl.nr0.htm.
Tamborini, Christopher R., ChangHwan Kim, and Arthur Sakamoto. 2015. “Education and Lifetime Earnings in the United States.” Demography 52: 1383–1407.
Excellent post, as always. I think the issues you’ve addressed today are felt world wide for things that didn’t work out because of COVID and I’m sure compounded by living with a disability.
I think you should consider returning to school – to complete your degree as an education will only enhance your employability. Have you considered a career in advocacy? You certainly are a gifted writer – there are so many things you will accomplish with that skill.
Stay well and keep going, Grace.