Growing up, I assumed my adulthood wouldn’t look that different from my peers. I had high expectations for myself. I knew I wanted to go to college by the time I was in elementary school. I had dreamt of working in medicine. At the time, I had no idea just how difficult it was to figure out adulthood as someone living with a physical disability.
I graduated from high school in 2018 and was looking forward to attending college. At the end of my freshman year at Westfield State University, the staff at the career center acted surprised to see me there. I felt unwelcome. I found an advertisement for a local publishing business. Later, I was disappointed to learn that the business was not accessible.
The U.S. Bureau of Labor Statistics found 21.3 percent of disabled people were employed last year, up from 19.1 percent in 2021. This is the highest percentage ever recorded. Unfortunately, the unemployment rate for disabled people is still triple that of non-disabled people.
I began looking for work in December 2019. Nearly four years later, I’m still unemployed. When an employer finds out I have Cerebral Palsy, they no longer want to interview me.
Before the COVID-19 pandemic began, I applied for a host position at Texas Roadhouse. In an email to the manager, I informed her that my PCA would accompany me to work. Subsequently, she canceled my interview. I have filled out hundreds of job applications, and I’ve received no offers.
There is another barrier to employment that is not discussed enough. I require assistance with daily activities and hire PCAs to assist me with showering, toileting, and getting dressed, among other things.
The absence of a PCA is also a barrier to employment for people like myself who require assistance with everyday tasks. My PCAs assist me with toileting, dressing, and showering. They also help me with transportation to medical appointments and other errands.
I wouldn’t be able to work without access to a PCA. Without their help, I wouldn’t even be able to get to work. Furthermore, working 40 hours a week without using the restroom would be impossible. Non-disabled employees would not be required to work full-time without access to a restroom.
I have Cerebral Palsy and rely on Massachusetts Medicaid to pay for my PCA services. Unfortunately, the annual cost of my care is nearly $60,000. I couldn’t afford to pay for my care out of pocket. I’d be bankrupt from needing daily care to survive.
Millions of disabled people face these same challenges. A.J. Kreig has Spinal Muscular Atrophy and uses a wheelchair. Kreig graduated from the University of Minnesota in 2013. Unfortunately, he is not working full-time as he had hoped. He says that despite his degree, he cannot make the money he deserves. Currently, the state of Minnesota pays for Kreig’s services in full. However, to keep them, he must earn $1,113 or less per month. That is the official poverty line.
Anna Landre also has SMA. After graduating from high school in 2017, she was accepted to Georgetown University in Washington, D.C. Landre was delighted to have the opportunity to do a paid internship as a sophomore.
Unfortunately, at the time, Landre was forced to make a devastating choice. She could get paid $14 an hour for her internship. Unfortunately, this modest wage would mean Landre would lose the vital personal care assistance she needed.
The late Judy Heumann was a lifelong disability advocate. Heumann co-founded the first Center for Independent Living in the U.S. She also organized The 504 Sit-in in 1977 and published books. She worked until her death to avoid being forced into a nursing facility or other institutional setting.
There are numerous barriers to employment for disabled people. Disabled people should be able to work full-time and save for a house. They also shouldn’t lose their Medicaid coverage. For millions of Americans, including me, Medicaid is a lifeline.
Home and community-based services allow us to achieve our dreams. However, people like me shouldn’t be forced into poverty or forced to work until we are dead to receive the services we desperately need.
Carino, Jerry. “NJ Forces Disabled Howell Student to Make Brutal Choice: Internship or Health Aide Money.” Asbury Park Press, Asbury Park Press, 21 May 2018, http://www.app.com/story/news/local/values/2018/05/21/disabled-howell-student-nj-forces-choice-internship-health-aide/610909002/.
Cokley, Rebecca. “‘Work until You Die’ Is Not a Retirement Plan.” The Nation, The Nation Company, L.P., 10 Mar. 2023, https://www.thenation.com/article/society/judith-heumann-work-retirement-plan/.
Ceron, Ella. “Remote Work Helps Push Disabled Employment to a Record High of 21%. but the Gain Is Imperiled by Return to the Office Mandates.” Fortune, Fortune Media Group Holdings, 25 Feb. 2023, https://fortune.com/2023/02/24/remote-work-disabled-employment-record-high-remote-work-office-mandates/.
Littlefield, Susan-Elizabeth. “Minnesotans with Disabilities Say State Laws Restrict Financial Freedom.” CBS News, CBS Interactive, 20 Nov. 2022, https://www.cbsnews.com/minnesota/news/minnesotans-with-disabilities-say-state-laws-restrict-financial-freedom/.
Leiderman, Deborah. “The Activist Star of ‘Crip Camp’ Looks Back at a Life on the Barricades.” The New York Times, The New York Times Company , 25 Mar. 2020, https://www.nytimes.com/2020/03/25/movies/crip-camp-judy-heumann.html.