On Saturday, I talked to my uncle on the phone like usual. During our conversation, I told him I was still waiting for some important decisions to be finalized. For many disabled people, life involves a lot of waiting.

On Wednesday, I have an appointment with my physical therapist to begin the process of getting a new walker. It has been five years since I received my current one. When you use adaptive equipment daily, it has to be durable, and my current one is worn out.

The first part of this process involves the PT taking measurements of my extremities and discussing my needs. Next, the therapist will write a letter of medical necessity and submit it to my insurance company. After the letter is submitted, I must wait for my insurance company to decide whether or not the request is approved. The entire process can take months or even years. For example, when I received a new power wheelchair in 2021, the process took 18 months.

The people who work for my insurance company have never met or spoken to me. I want to live life like any other 23-year-old. Durable medical equipment makes this possible. Without my equipment, I would be stuck in bed all day.

When you rely on caregivers, that involves waiting as well. Sometimes, people have to wait for their caregivers to arrive before they can get out of bed to start their day. In college, the first PCA I hired was late nearly every day. My mom and a friend often took me to college at the last minute. For me, relying on others is one of the hardest things about being disabled.

I’ve been looking for employment since 2019, and four years later, I am still unemployed. I’ve filled out hundreds of job applications and have received no offers.

I am still waiting for an employer to give me a chance. I would gladly help an employee understand my needs. The more my needs are met, the more successful I will be.

Cerebral Palsy means that I am at the mercy of everyone around me sometimes. My disability doesn’t mean I am stripped of my autonomy. However, navigating bureaucratic systems is a long, emotional process that can take years.

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