We the People is a blog series that features the stories of members, supporters, volunteers, and allies of the American Civil Liberties Union of South Dakota. Together we are accomplishing critical work in our state to protect and advance civil liberties across the Midwest and beyond.
Nothing is stopping Kendra Gottsleben who has been paving a better path for South Dakotans with disabilities for years. Sparked by her own journey with Mucopolysaccharidosis (MPS), a genetic condition she’s had since birth, Gottsleben has led the conversation about disability rights through creative events, educational efforts, and more.
During (and beyond) Disability Pride Month, Kendra hopes her peers take time to understand the history of folks with disabilities in particular, what the ADA is and how anyone can become an ally to people with disabilities.
We each have the ability to help create a society where everyone is embraced and empowered. All means all!
Tell us a little bit about yourself. What do you do for a living/where do you go to school? What do you like to do in your spare time? Family/pets?
I am the marketing communication specialist at the Center for Disabilities at the University of South Dakota Sanford School of Medicine in Sioux Falls.
I am also an author and spokesperson on living a life with a rare disease and disability, and I am the founder and executive director of the nonprofit organization Rare by Design. I graduated from Augustana University with a double major in Sociology and Psychology. My career blends the two worlds in which I grew up: medicine and education. My memberships on numerous boards, advisory groups and professional societies keeps me actively engaged locally, state-wide and nationally.
I define my life by having a positive outlook and success in overcoming obstacles. I refuse to be defined by Mucopolysaccharidosis (MPS)—the rare genetic condition I have had since birth. I enjoy a stylish outfit and matching shoes as I strive to make a difference. One of my favorite colors is yellow which embodies my life motto: When life hands you lemons, make the BEST lemonade possible!
When did you first hear about the ACLU?
I can’t remember when I first heard about the ACLU, but it’s an organization once I heard about, I felt great admiration for what the ACLU stands for and what its staff fights for. I have always had a long-time passion for helping others. As a person with a disability, rare disease advocacy has been part of my life’s journey for a long time. So many in society are unaware that disability rights are part of the civil rights movement.
Which of the ACLU’s issue areas are you particularly passionate about and why?
All of the issues the ACLU covers are important to me, but the most significant to my life is disability rights.
It has been 33 years since the signing of the Americans with Disabilities Act (ADA) by President George H.W. Bush on July 26, 1990, but there is still much work to be done to make society less exclusionary, more equitable and less discriminatory toward people with disabilities. Unfortunately, society sometimes overgeneralizes disability, leading to dehumanization and defeat. People with disabilities and rare diseases are natural components of diversity within the human race.
We are all individuals first, making significant impacts on our communities and the world.
Recently, you hosted the second The Style Show fundraiser for Rare by Design! Where did the idea for this event come from and how did it go?
I had the incredible opportunity to take part in a New York City fashion show with Tommy Hilfiger and the Runway of Dreams Foundation in 2016. Being a small-town South Dakota girl in the Big Apple, I’d never felt the thrill of such a large-scale event celebrating people with disabilities, and it left me so inspired that I knew I had to bring that feeling and message to South Dakota.
For many years, the idea remained a dream as I navigated the demands of life as a busy young professional. Then, in 2020, I underwent open heart surgery, an incredibly risky procedure for anyone, but even more so for someone with a rare disease. When I woke up from surgery, I heard the voice of my grandmother, who had recently passed and shared my love of fashion as a seamstress, telling me that I couldn’t wait any longer.
Life is short, and there is no better time than now.
So, in 2022 we held our first The Style Show, and then in 2023 we held our second one. Both events were absolutely amazing to watch unfold! We featured models of varying abilities, ages, genders, sexual orientations, races and diverse body types. The goal of both events was to demonstrate what true diversity can look like. So often when the word diversity is discussed, people with disabilities or rare diseases are not included. Individuals with disabilities are the largest minority group because a person can be both a minority and have a disability/rare disease.
Why do you think it’s important for people to be involved in their communities? How do you like to show up?
It’s important because everyone’s backgrounds and life experiences bring different unique skillsets and perspectives to the table. It is extremely empowering to see people together with shared values and the new ideas that come out of their work to make better spaces for all.
I like creating opportunities for others to take part in spreading awareness and advocacy. But I also lend my voice and perspective to help move the needle forward.
Do you consider yourself a changemaker? Why?
I don’t see myself as a changemaker, but at the very least, I would consider myself to be someone who tries to help change. I am a person who has been passionate about being there to help others on the sidelines making their impact on the world. I feel I am more of a cheerleader. I am the person who people can tap on when needed.
What issues do you think are most important for South Dakotans to pay attention to?
I think there are so many critical issues that South Dakotans need to pay attention to, but the biggest general one is listen to what people running for office say when campaigning versus their past voting record and is their real concern their constituents?
Another serious issue is that many of the recent bills and laws have been trying to make South Dakota less inclusive. This hurts our state. I believe diversity is key to making society a beautiful place.
July is National Disability Pride Month; how do you suggest folks observe this?
I’d suggest watching the documentaries called Crip Camp on Netflix and The Gang of 19 – The ADA Movement on Public Broadcasting. Both documentaries share details about key civil right movements for people with disabilities. Also, take some time to learn more about what the ADA is and how society can become allies for people with disabilities.
The ADA was a monumental law that shattered the barriers of discrimination against people with disabilities. It is crucial to understand that disabilities and rare diseases do not discriminate, and they are not always immediately apparent. In fact, many individuals may experience disability or rare disease at some point during their lifetimes.
We all need to strive to create a society where everyone is embraced and empowered. All means all.
