Woman with light blonde hair wearing glasses and a purple sweater


Rachel living with Albinism and Borderline Personality Disorder

When I am not in classes or doing homework for grad school, I love hanging out with friends, playing piano, writing, and serving in the disability ministry at church. Part of the reason I am pursuing a music therapy masters equivalency degree is so I can help other people with disabilities since I have albinism. Far from holding me back, having this disorder has given me so many opportunities.

For mor information about albinism, please watch our Albinism in FRAME film:

Or visit the National Organization for Albinism and Hypopigmentation ((NOAH)

Have a question for Rachel? Ask a question here.

Advocacy is important to me because people with disabilities matter and have value and make the world better. I used to volunteer for people who have developmental disabilities, and even if I came in the door feeling crappy from my own disabilities, I went out the door feeling refreshed, loved, and valued. My job is working with early childhood Deaf and Hard of Hearing students in special ed at a public school. It is the best job I've ever had. It is so fulfilling--I can't even explain how amazing it is. I have a friend who has many rare disorders and will not be on earth much longer, and she's spent her life advocating. She told me to never stop fighting. I promised I would never ever stop fighting because I can't help it. It's who I am. Wherever I go I look for universal design. During conversations, I try to help people see someone's point of view that involves a disability. I watch TV shows and even Disney masterpieces with a Disabilities Studies lens on.
Why is Advocacy important to you?
I want people to not simply know what my disabilities are but to actually understand them because I've found that it helps people communicate with me in a way I understand better. Also, I feel like it gives me more "leeway" to ask questions when I don't understand something and more positive responses when I request accommodations.
What would you like people to know about you?
I'm proud that I've performed on the piano well over 100 times and that I was the Minnesota Music Teachers Association Student of the Year in 2013. I've been teaching piano lessons since 2011 and have taught every age and ability. I'm proud that I got a triple major (Piano, English Lit, Bible) and a minor (Psychology) in 2017, and a master's level certificate (Disability Policies and Services) in 2019, and about 2/3 of a master's degree (Music Therapy). I'm most proud that I've done all this with several disabilities, much of the time with many of them not even diagnosed or treated, and I've even gotten to present with Rick to university students in a genetics class.
What are you most proud of accomplishing?
I want people to see people as people! That means giving the dignity that is deserved to individuals with disabilities, whether visible or invisible. Giving dignity to the elderly and the unborn, and everyone in between. If we see each other as equals, we'll naturally treat each other with love.
What change would you like to see in the world?

Rachel's Recent PEARLS Posts