Advocacy Is Exhausting:

As someone who has a disability, I often have to advocate for myself. Advocating for yourself daily is exhausting. Everything from getting prescriptions refilled to getting accommodations in college or the workplace can feel like an uphill battle. Frequently, it takes a long process to get accommodations to begin with.

At Westfield State University, for example, you have to renew your accommodations every single semester. My need for accommodations is not going to change between semesters. Cerebral Palsy doesn’t go away. My learning disability isn’t going away either.

Sometimes, I feel like nondisabled people view accommodations as some significant advantage. When I took the SATs in my junior year of high school, I had accommodations such as extended time and the use of a calculator for the math portion of the test. These accommodations allowed me to be able to take the SATS.

When the college admissions scandal happened, I was disappointed to learn that some parents faked disabilities in order for their children to qualify for accommodations on the SATs and the ACTs. Accommodations don’t exist for people who don’t truly need them. For some people, it’s hard for them to prove that they even need accommodations, to begin with. In high school, I needed accommodations in order to perform well on the exam. People needed to see that I was a capable student. Growing up, I often took tests in a separate area away from my peers. My peers often didn’t think this was fair, but it was a way for me to take the test fairly.

Sometimes even with proof, accommodations or things to improve one’s quality of life are denied. In March, I finally received my new power wheelchair after waiting for more than a year. I went through the process of trying out different types of chairs and getting properly fitted. My health insurance denied the chair in its entirety at first. However, with more substantial letters of medical necessity from my team at Boston Children’s Hospital, they eventually approved the chair. I was relieved when I received that news in the mail. My insurance, however, denied the seat elevation function on my new power wheelchair because they deemed it not to be “medically necessary.” Although I might not need the seat elevator for medical reasons, I use it to access more of my environment and improve my quality of life. A greater quality of life isn’t a good enough reason for health insurance to approve something.

As someone who has CP, advocacy can feel daunting. However, advocating for myself has taught me to be tenacious. When I advocate for myself I feel proud. It takes a lot of work, but it often pays off.

Source:

Snyder, Susan. “Why Students with Learning Disabilities Need Accommodations on Standardized Tests and Hate That Some Parents Lied about It.” The Philadelphia Inquirer, 31 Mar. 2019, http://www.inquirer.com/education/learning-disability-college-admissions-bribery-scandal-20190331.html.

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