What Do We Want Our Lives To Look Like?

For people with disabilities, figuring out how to navigate daily life is challenging. Back in 2018, I was a senior in high school, and I was looking forward to attending college. I began to think about my future. Like most 18-year-olds, I had a general idea of what I wanted to do for a living. I knew that I enjoyed technology and the humanities.

Unlike other high school seniors, I had to think about what adulthood with a physical disability would look like. Nobody tells you how to be an adult, let alone an adult with Cerebral Palsy. I didn’t know any adults with disabilities I could talk to about transitioning to adulthood.

I had to figure out how to request more PCA hours from Medicaid. This was difficult. I went through three PCAs in as many semesters. I was thankful my parents helped me navigate health insurance. In 2019, I began the process of getting a new wheelchair. The process was long and frustrating. Altogether it took 18 months. I had to file appeals and start an online fundraiser for the seat elevator on my chair.

I knew I wanted to get a job and move out of my parent’s home. Last month, I completed a Google Career Certificate specializing in e-commerce and digital marketing. Right now, I am researching different jobs within the field while taking additional courses. Hopefully, I’ll be able to find a job within the next couple of years.

In August 2020, I moved into an apartment with my best friend. He is employed as my PCA. My favorite part of living in my apartment is the TV in my bedroom. I love watching The Middle, The Boston Red Sox, and The Pittsburgh Penguins. I also enjoy going grocery shopping.

I know that many adults with disabilities feel like I do. With the help of her grandparents and friends, who help her access a complex network of social services, 25-year-old Courtney Johnson lives relatively independently in Johnson City, TN. Johnson is a blogger and college student who is autistic and has other chronic illnesses.

Johnson says she hasn’t made any plans to ensure she continues to receive the same level of support in the future. In particular, she fears that if her family and friends cannot help her, she will be exploited or experience physical harm. She has already been in vulnerable situations, and she doesn’t want that to happen again.

In May, Dan and Samuel Habib released their short film My Disability Roadmap. Samuel interviews various people with disabilities, including Keith Jones, Judy Heumann, and Bob Williams. Each of Samuel’s mentors offers their perspective on adulthood with a disability.

I, like Samuel, am an adult with Cerebral Palsy. Relationships, employment, and independent living have been on my mind since high school. It was wonderful to see Samuel tell his story and see his perspective on adulthood with CP.

Jeneva Stone of Bethesda, Maryland, has been “fluximoned” by the long-term planning process for her 25-year-old son, Rob. He has dystonia 16, a rare muscular disorder that makes mobility hard for him. As a result, Rob needs complex care.

Stone says her family has done some planning, including establishing a special needs trust to manage Rob’s assets and an ABLE account, a form of savings account for persons with disabilities. They are also attempting to grant Rob’s brother medical and financial power of attorney. Ultimately, the family wants to make sure Rob still has a say in where he lives and his day-to-day care.

Adulthood with a disability is challenging. It is tough to navigate healthcare and other systems such as Social Security. At times, I’ve felt like I needed a law degree to understand the language in the small mountain worth of paperwork I receive every year. Adults with disabilities deserve to live their lives to the fullest, and having the right services and support allows us to do that.


Habib, Samuel, and Dan Habib. “I’m a College Student with a Disability. Stop Treating Me like a Child.” The New York Times, The New York Times, 17 May 2022, https://www.nytimes.com/2022/05/17/opinion/my-disability-roadmap-adulthood.html.

Whitehead, Sam. “Americans with Disabilities Need an Updated Long-Term Care Plan, Say Advocates.” NPR, NPR, 9 Nov. 2022, https://www.npr.org/sections/health-shots/2022/11/09/1134916899/disabilities-long-term-care-plan-savings-aides.

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