Proving my disability eligibility (again)

Well hello there! 👋🏽

It certainly has been quite a while since my last post, and there are many reasons which you will soon learn.

As an educator, I enjoy summer because not only does this season provide me with time to relax, read, spend time with my incredible family and friends, but time to reflect, grow professionally and personally, and get ready to serve, teach, and advocate for my students.

More recently, I’ve been involved in advocacy work as it is on my immediate agenda to meet with various legislators. As an adult female with an unknown type of neuromuscular dystrophy, I face challenges that are different from those experienced by people who appear able bodied.* For example, every six months to a year, I receive a note from the state government stating that I am no longer disabled effective [insert date]. You can imagine my excitement as the clock strikes midnight on said date as I anticipate this change in my physical abilities! However, at last, I appear to have not been cured, and I’m left wondering where my Disney miracle is. This happens time and time again.

Why am I getting these letters you ask?

Well, you see, the current federal definition of a disability is determined by your income.** I work full time, love what I do each day, and know what I do matters. Because I work full time, I receive these letters stating I’m no longer disabled, and consequently have to gather paperwork (health forms, financial statements, and other “related” documents) to prove my disability eligibility if I still want to receive assistance with my ADLs. You know, so I can go to work and be a productive, contributing member of society.

I’m not content with the current definition of disability. As an educator and humanist, I am advocating for my past, current, and future students who may fall into similar situations as they graduate public education and enter the working world. It is my hope that they will not have to go through this struggle every six months to a year.

I know this may be a complex topic, and I tried my best to explain my experience/perspective. However, please know I am open to any questions and/or constructive comments.

Xoxo Jess

Foot notes:

*Please know I am neither claiming nor denying that my challenges are more difficult or less difficult, just different.

**See screenshot depicted below