25

Today is my 25th birthday. It’s hard to believe how fast time has flown by. The days of birthday parties with my friends and looking forward to my birthday for months are long gone.

It is hard to feel excited about your birthday when you feel like you are asking for too much. It is hard to see nondisabled people achieving life’s traditional milestones such as employment, dating, and marriage. More and more, I have realized how hard it is to achieve your dreams as a disabled person. 

I have spent the last five years looking for work. I have only had one paid work experience in that time. Last year, I wrote an article about inclusion in the workplace for KenCrest.

The past year has been a difficult one. I have had to deal with too many bureaucratic hurdles. I’ve had to deal with health insurance, the local community college, and The Social Security Administration. 

Over the past year, I’ve struggled mightily to get academic accommodations in college. Something as simple as assistance with note taking became a months long argument that left me feeling defeated. Last year, the director of the disability services office said notetakers weren’t an option for remote classes. When I brought this up to her, I was told I had “misinterpreted” my accommodation agreement.

Disability services is supposed to help disabled students access higher education. Sadly, they’ve done the opposite for me. The disability services staff has been hostile to me, and I’ve reached the conclusion that they don’t like me. 

In March of this year, I emailed the president of Greenfield Community College. I emailed her because the disability services office wasn’t meeting my needs. She forwarded my email to the provost who was overseeing the disability services office.

Two months later, I received an email from the provost regarding my concerns. His response left me in disbelief. Instead of offering to help me get what I needed, he suggested that I transfer to another college.

Getting your needs met as a disabled person is difficult. It requires a level of patience that I never knew I had. Even though I try to be patient, it really makes me question myself sometimes. 

For many years now, I’ve realized that resources that are supposed to help disabled people often don’t. Programs such as vocational rehabilitation, Medicaid, and Supplemental Security Income are intended to help disabled people. Unfortunately, they can be difficult to navigate. 

When it comes to health insurance, this last year has been frustrating. In February, my new walker was delivered after nearly five months.  Five months is a reasonable timeframe for receiving durable medical equipment.

I also had to figure out why I was being charged a copay for one of my medications. Figuring this out meant that I spent two months making phone calls and sending emails to my insurance company, pharmacy, and primary care physician. Ultimately, I was able to have the form of the medication changed to avoid the copay. 

I have received two unexpected letters from the Social Security Administration in the last year. Unexpected mail from The Social Security Administration makes me nervous. I worry that my benefits may be terminated.

One was a letter stating I had too many assets to continue receiving SSI. The reason? I had $2,034 in my bank account, a mere $34 over the limit. Without SSI, I would have no way to pay my bills.

The other letter informed me of an overpayment from last year. However, the letter indicated that I had received the correct amount. I had to appeal their decision. Fortunately, the appeal was successful.

While this past year has been challenging, I am grateful to be surrounded by friends and family who are there for me through it all. I don’t know what I’d do without them. I want to say thank you to everyone who has loved, cared for, and supported me through the past year.

I hope the next year is a little less stressful. Being disabled often feels like a full-time job. Cerebral palsy should not stop me from living my life to the fullest and participating in society. Hopefully, someday, I will have the chance to achieve my dreams.