Growing up with Cerebral Palsy, I had extensive support. I had three major surgeries while growing up, including one at St. Louis Children’s Hospital. In addition, I received PT in both school and outpatient settings. I was a patient at Boston Children’s Hospital for ten years before transitioning to adult care. Thankfully, I can continue receiving care at Spaulding Rehabilitation Hospital.
At 18, I graduated from high school and was looking forward to attending college. In Massachusetts, students with disabilities can remain in public school until the age of 22. My question is, what happens when students with disabilities leave public school? I wasn’t prepared to navigate adulthood with CP after being fully included since daycare.
I knew I wanted to live life like anybody else does. I wanted to work for a living, get married, and perhaps have children. Because I receive SSI and Medicaid, getting married would impact my benefits. Medicaid pays for my PCA services, so I can’t lose that coverage. Millions of Americans with disabilities still don’t enjoy marriage equality.
Following my freshman year of college, I wanted to work part-time that summer. This was three years ago, and I’ve yet to find a paying job. Since then, I have filled out hundreds of job applications. When employers learn that I have CP, they frequently decline to interview me. The Americans With Disabilities Act makes discrimination illegal. Sadly, it still happens regularly. If attitudes towards people with disabilities don’t change, people like me will be unemployed forever.
Because I can’t lift 30 pounds, I was turned down for a job at a local gym. The manager of a local Homewood Suites hotel canceled my interview once I disclosed my disability. I couldn’t even get a job at a local grocery store because I couldn’t climb stairs. I’ve also been turned down for various positions because my disability prevents me from driving a car.
According to the Bureau of Labor Statistics, 19.1% of those with disabilities worked in the United States in 2021. This means that 80.9% of disabled Americans were unemployed last year. Unfortunately, I am one of them. As time has passed, I’ve wondered if I’ll ever find a job.
One of the reasons many disabled people are unemployed may be overlooked. Some people with disabilities rely on government services, such as Medicaid, to get by in their daily lives. People cannot get through the day without getting dressed, having meals, or showering. The amount of money you can make and the number of assets you can retain are both limited in some of these programs. The system ultimately forces disabled people to live in poverty in order to survive. Medicaid should not be based on a person’s financial situation.
I happened to read an article about a woman named Anna Landre shortly after graduating from high school in 2018. Landre, who has SMA, was valedictorian of her high school class 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.
Shortly afterward, Landre was forced to make a painful choice: get paid for her internship at $14.00 an hour or lose the critical personal care assistance she needed to survive. People with disabilities should not have to make this decision. Just because someone needs assistance with their personal needs does not mean they cannot work.
When I read Anna’s story, I suddenly realized that many people like me are forced to make difficult decisions. I started to panic. I wondered if I’d be able to work at all. I cannot lose Medicaid coverage because, without it, I’d be forced into long-term care. I don’t want to be 22-years-old and living in a nursing home.
Adulthood with a disability can be very lonely as well. Growing up, I was included in everything. I went to summer camps and birthday parties. I also played baseball and took martial arts. Ever since becoming an adult, I’ve felt isolated. Most of the time, I’m home with my roommate. Sometimes, a friend will come to visit. Still, I rarely go out these days. I don’t get invited to parties and events anymore. It hurt when I stopped getting invited to things.
Particularly since the COVID-19 pandemic began, I’ve been feeling lonely. I was forced to go a year without seeing my aunts, uncles, and cousins. This was harder than I thought, especially around the holidays.
Adults with disabilities shouldn’t be forgotten about. Too many of us are unemployed, can’t marry, spend days at home, and are trying to figure out where we belong. Inclusion and equal treatment shouldn’t end when someone turns 18. Disabled Americans deserve equal opportunities regardless of age.
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/. Mahoney, Erika. “Millions of Disabled Americans Could Lose Federal Benefits If They Get Married.” NPR, NPR, 13 Feb. 2022, https://www.npr.org/2022/02/13/1080464176/disabled-americans-cant-marry-able-bodied-partners-without-losing-federal-benefi.
“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.
Walsh, Mary Ann. “Ch. 688–Transitioning from Special Education into Human Services.” (1985).