The Maze of Disability

Living with a disability often feels like navigating a complex maze. On Wednesday, I had an appointment with my physical therapist so I could begin the process of getting a new walker. In between our usual conversations about sports, pets, and our family lives, he asked me lots of questions to begin composing a letter of medical necessity.

It intrigues me when I hear myself talked about in medical terms. We talked about my ability to complete ADLs. We also talked about my level of function according to the Gross Motor Function Classification System, among other things.

The Gross Motor Function Classification System (GMFCS) is a five-level classification system used to describe the gross motor function of people with cerebral palsy. It is based on self-initiated movement, focusing on sitting, walking, and mobility.

Yesterday, I called the office and was told my prescription was no longer valid. I emailed my physiatrist and requested a new prescription. Unfortunately, it will take a few days for me to receive the new prescription, which could delay getting my equipment.

I received a letter from the Social Security Administration last week as well. Letters from the Social Security Administration often make me nervous. The letter informed me of an overpayment earlier this year.

However, the letter indicated that I had received the correct amount. Unfortunately, I still had to appeal their decision. If the appeal is unsuccessful, the Social Security Administration will begin deducting a set amount of money from my check every month.

I have received SSI since 2016. Applying for and receiving benefits can be a lengthy process. Around 65% of all disability claims are denied by the Social Security Administration on the first application. The average wait time for an initial disability determination at the Social Security Administration reached an all-time high of more than six months, or 198 days, last year. It has nearly tripled in length during the previous decade.

I am tired of having to fight for things that I need. Navigating bureaucratic systems is a laborious, emotional process that can take years. For many people, being disabled often feels like a full-time job.


Konish, Lorie. “As Social Security Disability Application Wait Times Hit Record High, Experts Say It’s a Sign the Agency Needs More Funding.” CNBC, CNBC, 16 Sept. 2022,

Richards, Carol L., and Francine Malouin. ‘Chapter 18 – Cerebral Palsy: Definition, Assessment and Rehabilitation’. Handbook of Clinical Neurology, edited by Olivier Dulac et al., vol. 111, Elsevier, 2013, pp. 183–195, https://doi.org10.1016/B978-0-444-52891-9.00018-X.

Trudeau, Joyce. “Does Social Security Disability Deny Everyone the First Time They Apply?” Disability Secrets, Nolo, 21 Jan. 2022,

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