Today is the last day of Cerebral Palsy awareness month. It is the most common cause of childhood disability in the U.S. Cerebral Palsy is often considered a childhood condition. Upon turning 18 in 2017, I was forced to navigate uncharted territory as I was suddenly an adult with the same disability.
As soon as I graduated high school, all my school-provided support ended. I lost my biweekly physical therapy sessions. This led to my muscles becoming tighter, which caused pain. My joints also became stiff.
Physically, adulthood has been difficult. Cerebral Palsy does not progress in the traditional sense. Yet, it does change with age. Once I reached adolescence, I no longer had the same level of movement and function.
Changes in my level of function and fatigue led me to decide I needed a power wheelchair. I put off getting a wheelchair for as long as I could. I was afraid I would lose my ability to walk and become reliant on the wheelchair.
In addition, I lost my paraprofessional. I went through three PCAs in my first three semesters of college. I was unprepared to find my personal care assistants. They were often late or had unreliable transportation. As a college student, I didn’t want to be worrying about if I would get to my classes on time.
When I turned 22, I was not eligible to continue going to Boston Children’s Hospital. It is difficult to find doctors who treat adults with Cerebral Palsy. Fortunately, I can receive care at Spaulding Rehabilitation Hospital.
My primary care physician is located within the same medical practice I’ve been going to since I was an infant. I had to switch to a family medicine doctor rather than a pediatrician.
Gynecological care has been particularly challenging for me to navigate. Two years ago, I went to the gynecologist for my annual exam. She was genuinely surprised when I told her I wasn’t sexually active. At the time, I was 21, and she told me most patients my age were sexually active.
Figuring out intimacy and sexuality has also been a challenge. The idea of being intimate with someone is quite frightening. Requiring help with activities of daily living also affects my sexuality. My body feels like it is on public display for therapists, doctors, and PCAs to do whatever they please as long as they deem it to be helpful by their standards.
I don’t particularly enjoy the thought of having my partner help me use the bathroom or shower. More than anything, however, I wonder if my partner would see me as a burden. What if I needed to go to the hospital or had an incontinence accident? Would my partner be okay with this, or would they want to leave me?
At times, the healthcare system is upsetting to me. Two years ago, I received a new power wheelchair. The process took eighteen months. My insurance denied the chair entirely at first. With every setback, my patience grew thinner.
However, they denied the seat elevator as well. According to Health New England, I didn’t need it. The people who made this decision have never met or spoken to me. I am more than a letter of medical necessity or a diagnosis, but that is how they see me. It is impossible for a letter to describe everything about my life.
Navigating bureaucratic systems is a long, emotional process that can take years. Disabled people often have to fight for things that improve their daily lives. Insurance companies shouldn’t deny disabled and chronically ill people access to equipment and other supplies they need to live.
Figuring out employment has been another challenge. The U.S. Bureau of Labor Statistics found that 21.3 percent of disabled people were employed last year, up from 19.1 percent in 2021. However, the unemployment rate for disabled people is still triple that of non-disabled people.
Many programs that disabled people rely on require them to live in poverty. Medicaid is often tied to SSI. Unfortunately, SSI only allows a single person to have $2,000 in assets and a married couple to have $3,000 in assets. Disabled people who rely on Medicaid are also unable to save for retirement. 401K plans count toward the $2,000 asset limit.
I cannot lose coverage because Medicaid pays for my PCA services. I couldn’t afford to pay for my annual medical costs out of pocket. My PCA hours cost more than $50,000 per year. I also use a power wheelchair that costs more than $20,000. The cost of my walker exceeds $1,000.
Socially, as an adult, inclusion hasn’t been talked about much. It’s as if society forgets about disabled people once they are no longer kids. For me, adulthood has been a lonely, isolating experience.
In contrast, I was fully included as a child. I went on field trips and was invited to birthday parties. I played sports and attended summer camps. I went to daycare and attended public school.
Living with Cerebral Palsy is hard, no matter how old you are. We aren’t kids anymore, but we deserve to be included in everyday life. Disabled people of all ages deserve to be included in society.
Sources:
“Cerebral Palsy.” National Institute of Neurological Disorders and Stroke, U.S. Department of Health and Human Services, https://www.ninds.nih.gov/health-information/disorders/cerebral-palsy.
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/.
Parent, Rene. “Defined Contribution Pension Plans and the Supplemental Security Income Program.” The United States Social Security Administration, The United States Social Security Administration, 1 Mar. 2006, https://www.ssa.gov/policy/docs/policybriefs/pb2006-01.html.