Being a disabled person in America is challenging, no matter how old you are. Since I’ve become an adult, getting support has become much harder. It’s as if society forgets that disabled children grow up. When I graduated from high school, I’d never been more anxious about my future. After years of attending daycare, preschool, and public school, I felt lost. Suddenly, I had no idea what my life would look like.
Most recent high school graduates face a degree of uncertainty about their future. Having Cerebral Palsy just made that uncertainty much more prevalent. As soon as I graduated, my IEP and supports were no longer relevant. In my case, this meant that I lost biweekly physical therapy sessions and the personal care assistant the school provided.
I went off to college, hoping to earn a bachelor’s degree. Westfield State University was known for its disability support services. On their website, they showcased an impressive array of majors, clubs, and on-campus resources.
Shortly after arriving on campus, it didn’t take long for me to discover that receiving accommodations was difficult. From obtaining exam accommodations to ensuring that I had accessible textbooks and furniture, nothing was simple. It required a level of advocacy I had never encountered before.
Many e-mails, forms, and phone calls are involved in the process. There are no IEPs or 504 Plans in college. Because you are legally an adult, you are in charge of most advocacy. Colleges are not obligated to assist you with accommodations if you do not register with the office of disability services. It felt like getting what I needed was a full-time job.
My first year went well despite logistical challenges with PCAs. I enjoyed my coursework and even declared a major. After taking a communications class, I decided I wanted to major in it. I had hopes of becoming a journalist or a news reporter. I did well academically and enjoyed writing for the college’s newspaper.
COVID-19 changed the college experience for millions of college students, including me, worldwide. I planned to take the spring semester off anyway to focus on my mental health. When I returned to classes remotely, it was a challenge. I didn’t like online learning.
I only had limited access to the disability services office. Due to scheduling and monetary constraints, I could not attend the autumn semester of this year. I was eager to return to the university in January. I completed and submitted an application for re-enrollment. In an email to my advisor, I outlined the courses I wanted to take. She did not respond to e-mails that I sent to her. In late December, I met with my advisor via Zoom to finalize my course load.
After nearly a week, I checked my schedule. To my dismay, I had never been registered for my complete course load. My mother eventually called the university and complained. Only then did I learn that the administrative assistant was sick, and as a result, she never received my advisor’s email requesting that I enroll in the classes we had discussed. I lost all interest in continuing to attend Westfield State University. A university that promised to provide excellent disability services let me down.
When it comes to higher education, I want to feel supported. I foolishly assumed that the faculty at Westfield State would care about me, however, that wasn’t the case. If I’m paying thousands of dollars for an education, I want to feel good about it. I want to be supported in my goals by my professors and other faculty.
Education is not the only area of my life that was impacted upon becoming an adult. When I turned 22 this past September, I could no longer receive care at Boston Children’s Hospital’s Cerebral Palsy Center. I had been a patient there since I was ten years old. The healthcare system seems to think CP is exclusively a pediatric condition. Unfortunately for them, I still have Cerebral Palsy. Fortunately, I can see my specialists at Spaulding Rehabilitation Hospital.
One of the biggest challenges I’ve dealt with since becoming an adult is health insurance. My first hurdle was securing enough PCA hours to attend college full time. Little did I know that this was relatively easy compared to what awaited me the next couple of years.
Insurance companies are unlikely to pay for more than the bare minimum. Last year, I received a new power wheelchair. I had to file two appeals against my insurance company’s decision. While I eventually won my second appeal, insurance still refused to cover the seat elevator. I was very fortunate that my community raised enough money for the seat elevator after the fact. It is a tremendous privilege to fundraise for your medical expenses. It’s worth mentioning that the people who make decisions regarding my health insurance have never met or spoken to me. They don’t see me as a human being. The process can feel very dehumanizing.
Every aspect of life has presented challenges since becoming an adult. I am currently 22 years old. I am actively looking for work. I’ve been searching for work since I was 19 and haven’t been successful. I couldn’t even get a job at a fast food restaurant or a grocery store. My biggest fear is that I’ll never be able to find work. According to the Bureau of Labor Statistics, 19.1% of people with disabilities worked in the United States in 2021. It makes me sad that so few Americans with disabilities work.
I tried to work with my local vocational rehabilitation office. Initially, my counselor was helpful. I was assigned a new counselor after about a year. This was when the trouble began. She didn’t return e-mails or phone calls. During the time that I was a client of MRC, I went through three different counselors. MRC’s purpose is to help disabled Massachusetts residents find work. Where is the help? Where are the staff members who answer their phones and check e-mails?
As someone who has Cerebral Palsy, I am capable of holding a job, paying taxes, having children, and doing almost everything any non-disabled person wants to do. Sure, I can’t walk independently, but that doesn’t mean I am less worthy than anybody else.
Everybody can make a difference in the world and the lives of their family and friends. Some of us need help to accomplish our goals. Disabled Americans want to be cared about by organizations and people who are supposed to help them. I am one of those Americans. I’ve lost hope in the systems of this country. Programs such as vocational rehabilitation and Medicaid are supposed to help disabled Americans. All too often, they make it more difficult for people like me to live our lives to the fullest.
People should care about those with disabilities and their rights. Anyone can become disabled at any point in their lives due to an illness, accident, or injury. As you age, you can also develop conditions such as arthritis, and diabetes which can lead to disabilities. Older adults can experience difficulties taking care of themselves which can mean they need home health care services and an accessible home. Disabilities can and will likely impact us all.
“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.