When most people think of work, they imagine paychecks, offices, or clocking in for shifts. People can go home at the end of their workday. However, living with a disability often feels like a full-time job in itself.
I live with cerebral palsy and spend time managing physical symptoms such as spasticity and fatigue. There is also a significant amount of paperwork and administrative tasks that often go unnoticed. Every week, I set aside time for phone calls, forms, appointments, applications, and appeals.
Over the past week, I spent hours doing things related to my disability. On Monday, I emailed my local housing authority to inquire about its policy regarding live-in personal care attendants. Afterward, I gathered income verification documents and medical records, then created a documentation packet. All documents must be located, organized, reviewed, and sent properly.
On Tuesday, I was on the phone with my physical therapy office, trying to fix an error regarding an outstanding balance. I also attempted to schedule additional appointments.
Wednesday was focused on bureaucracy. I called MassHealth requesting an update on the status of my fair hearing appeal and completed a Social Security redetermination interview. Although the calls were brief, preparing for them required intense concentration. They also came with the fear that a single mistake could jeopardize my benefits.
On Thursday, I had physical therapy at 7:30 a.m. Physical therapy is something I look forward to. However, I am exhausted afterward.
After resting and having something to eat, I had to contact my former personal care management agency to get information about my services because its contract with MassHealth ended in April.
Yesterday, I emailed my new personal care management agency to request a re-evaluation. Since April, I have been trying to appeal a reduction in my PCA hours. My request for a fair hearing was denied by the state. I must be re-evaluated by MassHealth before my fair hearing can proceed. I also called my PT office to request proof of payment for my appointments.
I had to do all of this over the past five days. Every day, I had to do something related to my cerebral palsy. None of it happens automatically. I wish people understood how much effort is really required to live with a disability.
If you look at each task individually, they probably don’t seem overwhelming. However, when combined, disabled people and their caregivers spend hours every week managing everything necessary to survive.
In addition to these responsibilities, there are daily disability-related tasks. People spend time managing caregivers, managing financial services, and monitoring health and safety. Daily activities such as showering, eating, toileting, and dressing also require more time.
For disabled people to survive, they often need to make phone calls, complete paperwork, send emails, and advocate for themselves. We become highly skilled at navigating complex systems that were not designed with us in mind.
Being disabled means more than just managing medical conditions. It also involves navigating a complex network of services, programs, and professionals designed to help you live your life. This “job” never truly ends, and you can’t take time off.