Woman with light blonde hair wearing glasses and a purple sweater


Rachel living with Albinism and Borderline Personality Disorder

I’m so glad you’ve landed at my blog! I love pink and sparkles, hanging out with friends, being with my fur babies, playing piano, doing crafts, and blogging and public speaking about my disabilities. Even thought having lots of disorders can hold me back physically and mentally, I have a whole other set of opportunities because of that, which I pursue to help myself and others with disabilities, especially through writing about my experiences and giving other people resources. Feel free to post questions on my blog and I’ll get back to you!

For more 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 (PWDs) matter and have value and make the world better. I have lots of experience through jobs and volunteering of being with people who have a variety of physical, developmental, or other disabilities, and even if I came in the door feeling crappy from my own disabilities, I often went out the door feeling refreshed, loved, and valued. I had a friend who passed away who had many rare disorders, and she spent her life advocating. She told me to never stop fighting for PWDs to have rights and acceptance and justice and understanding. I promised I would never ever stop 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. PWDs are amazing, and we can learn so much from each other.
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