I was diagnosed with Juvenile Idiopathic Arthritis in 2005. I was eight years old. That diagnosis would change my life and ultimately lead me to writing this exactly 15 years later.
When I graduated high school in 2015, I had no idea what I wanted to do. I attended two colleges in three years, exploring my options and taking a wide array of classes along the way.
I transferred to Utah Valley University in 2018 after the medication that was supposed to control my arthritis stopped working. I still didn’t know what I wanted to do and was now feeling the pressure of needing to settle down and decide so I could eventually graduate. I attended spring semester and the following fall semester, part time, while working full time and also battling with my systemic juvenile idiopathic arthritis, which had become out of control after being virtually nonexistent for years. No medications were keeping my disease at bay. After being hospitalized during Thanksgiving in 2018 (due to my arthritis), I made the heartbreaking decision to stop attending school. I was unsure if I would ever have the chance to return, but I knew I was stretching myself too thin. For the first time in my life, I truly felt disabled. Everything in my life had suffered from the resurgence of my disease.
I decided to return to school for spring semester of 2020. I spent most of 2019 getting my health back under control and regaining control of pieces of my life that were blown apart from it. I spend a full year repairing the damage that had been made when I dropped out of school in 2018. I had been put on academic probation due to my grades, but I couldn’t find anyone who could help me the way I needed help. I felt painted into a corner, as I couldn’t register for classes to take to raise my GPA, but the faculty I was working with could not remove the holds on my account to register. I spent hours on the phone, commuting to UVU and going through and printing out my medical records. I finally got in touch with a counselor at UVU that was willing to try and figure out a way for me to come back to school. While this person had never dealt with a situation like this before, they were willing to try something new and be an advocate for me.
That experience taught me a lot, but the biggest lesson I learned was that one person rooting for you makes all the difference. That experience showed me the gaping holes our society has made for people with disabilities- though I have been technically disabled for most of my life, I never felt truly different until adulthood.
So I created SAME.
Since 2005, my education has looked different than most. I have required many different accommodations to be able attend school. When I was first diagnosed, my parents were my advocates. They had no idea what IEPs or 504 plans were. They did not know what rights I had as someone with a disability.
We had to fight for many years to be able to be understood and taken seriously by teachers and school administration. There were many teachers who were not supportive or understanding, but there were always a few that I knew that I could rely on. My parents and I had to fight long and hard, just so I had a chance of graduating high school.
My parents were my fiercest advocates and I would not be where I am without them. I want to be that fierce advocate for others.
I created SAME in hopes to give others what had been missing for me. Nothing was more frustrating than seeing a problem and knowing that others also saw that problem, but no one would do anything about it. SAME was truly created to make student advocacy easy.
SAME 