Hi, I’m Nicole Ver Kuilen! I’m a disability rights advocate with the Range of Motion Project (ROMP). I am 29 years old, I live in Seattle, WA, and I’m proud to call myself an amputee! But, it hasn’t always been that way.
When I was 10 years old, I was diagnosed with osteosarcoma, a rare form of bone cancer, in my left tibia bone. I went through a year of debilitating chemotherapy treatments, and eventually had my leg amputated to save my life. That experience at that young age was quite traumatic and it significantly altered my view of myself.
Image courtesy of Nicole Ver KuilenGrowing up, I was not proud of my disability, in fact quite the opposite. I refused to associate myself with the word “disabled” and I went out of my way to hide my amputation and prosthesis. I avoided crowds, wouldn’t go swimming in public, and wore pants every single day of my life, even in 100-degree heat. My life was about hiding who I was. Hiding in embarrassment, hiding in self-hatred, hiding in fear, hiding my disability. It was the furthest thing from pride, freedom, or self-love.
Being able to accept, embrace, and share my identity as a person with a disability took close to two decades. Two defining moments in my life made that transformation possible: deciding to do a 1,500 mile triathlon down the Pacific coast, which I called Forrest Stump, and climbing with my partner to the 19,347ft summit of Cotopaxi with ROMP. These experiences confirmed in my mind that I could be disabled and proud, and I’ve been living that narrative ever since.
Image courtesy of Nicole Ver KuilenA critical part of that journey was also gaining access to the prosthetics I needed to be whole again. Insurance companies often do not cover or extremely limit prosthetic care to abysmal - and what should be illegal - standards. What you see in the media is not the norm. Globally, 9 out of 10 people who need access to assistive technology, like prosthetics, do not have access. Accessibility and Pride go hand in hand. I realized through my own experience that you can’t have one without the other.
To have now come out of that dark place - to have accessibility, to have pride - is truly something to rejoice and that is exactly why I’m excited to share and celebrate Disability Pride Month by taking part in ROMP’s Climbing for ROMP event on Saturday, July 31st!
Image courtesy of Nicole Ver KuilenJuly is Disability Pride Month
Chances are you probably haven’t heard of it, and you most likely haven’t attended a parade or celebration for it! (Well, now is your chance with Climbing for ROMP!) Disability Pride Month is just now making its way into the mainstream and is not yet nationally recognized like other month-long observances, such as Black History Month in February or LGBTQ Pride Month in June. Disability Pride is used to promote visibility and mainstream awareness of the positive pride felt by people with disabilities. Although it’s not yet as widely observed and understood, it’s on its way to becoming one of the most important months of the year for the disability community!
Image courtesy of Climbing for ROMPI believe every person deserves to love their body and to be proud of who they are. I also believe every person deserves access to the prosthetic care they need to be whole again. That’s what Disability Pride means to me. It also means taking back the term "disabled" and bringing pride to it! The word disabled shouldn’t make us shudder or feel pity or sadness, it should be something we are proud to share, embrace, and identify with. Ableism is the real word that should make us cringe!
Three things you can do this month as part of Disability Pride to help out:
1 - Join ROMP’s Climbing for ROMP event on Saturday, July 31st in honor of the 31st anniversary of Americans with Disabilities Act (ADA). Just sign up, get outside, and share this message: Mobility For All! The ADA was a monumental piece of legislation promoting equal opportunity, independence, and full participation of people with disabilities in society. However, three decades later, fair access to prosthetic care is the exception, not the rule – therefore #WeStillClimb for disability rights!
2 - Donate to ROMP to provide prosthetic care to amputees who lack access in Ecuador and Guatemala. Accessibility and Pride go hand in hand. We can’t have one without the other. Help us raise $31,000 to fund 20 amputees with the life-changing prosthetic care they need.
3 - Amplify the disability community’s voice by sharing Climbing for ROMP with your family and friends! We are working to get all 50 U.S. States and 31 countries represented as part of this global event. In the same way the ADA had a global impact, you can too. Help us reach this goal by sharing on social media, getting the word out, and asking others to join you in this one-day, virtual movement celebrating the disability community!
Image courtesy of Climbing for ROMPI’m honored to be a voice and advocate for the disability community and fair access to prosthetic care. Help us celebrate this month, bring Disability Pride to our communities, and accessibility to those who need it! Let’s make a difference. Let’s climb for ROMP!
Written by Nicole Ver Kuilen