Nicole ver Kuilen (right)
has signed up with ROMP.

When Nicole Ver Kuilen takes on a challenge, she doesn’t think small. A below-knee amputee since age 10, Ver Kuilen completed a 1,500-mile triathlon down the Pacific Coast a few years ago to focus attention on the barriers amputees face in obtaining fitness-oriented prosthetics. Then she launched Forrest Stump, a nonprofit that’s working to overcome the societal obstacles that make it difficult for people with disabilities to engage in physical exercise. And last fall, she organized We Just Felt Like Running, a virtual coast-to-coast run that attracted more than 600 participants who logged an aggregate 6,700 miles in one day—nearly doubling the event’s goal. The runners also gathered more than 7,500 signatures on a petition to Congress titled “The Rights of Americans With Disabilities to Exercise.”

When we learned a couple weeks ago that Ver Kuilen has joined forces with the Range of Motion Project, we were beyond thrilled. That’s a powerful convergence of direct-action advocacy with a ton of potential to make a positive impact on amputees’ lives.

ROMP, as you probably know from reading Amplitude, operates in the US and Central/South America to bring prosthetic care to amputees who would otherwise have little or no support. The organization spreads the word about amputee issues via fundraising climbs and award-winning documentaries, and its partnerships with high-profile brands and influencers have fueled momentum and created new opportunities for the limb-loss community.

Adding Ver Kuilen’s considerable talent and spirit to the mix could be explosive—in a good way. We talked with her last week about her new role as ROMP’s associate director of development. Our conversation has been edited for clarity and length.

Let’s hear about the new gig. How did it all come together?
I had a mutual connection through one of ROMP’s board members, Sandy Dukat. The biggest thing that struck me was kind of how we used the same language in talking about the issue of better access for amputees to prosthetics. It really makes a difference in how you talk about the problem and who you empower to make change. So one of the big things we originally discussed was, you know, amputees are not disabled by a missing limb; we’re disabled by a missing prosthesis due to outdated insurance policies that actually restrict access to leading an active life. That was something that really resonated with me and that we had been talking a lot about at Forrest Stump. We were totally on the same page—same message, same mission.

ROMP ended up serving as kind of a fiscal sponsor to Forrest Stump. They really wanted to embolden our vision. And when ROMP had the opportunity to start growing its staff, they reached out to me. They want to expand their mission to include the whole gamut of what an amputee might need—not just prosthetic care, but community based rehabilitation, innovation, research, clinical education, advocacy and then also the sports and recreation component. It was just a really beautiful combination of our missions and our narratives.

It sounds like you’re going to have a lot on your plate. What are some of the first steps you’re going to be focusing on?
Our goal is to raise five million dollars over the next five years to bring mobility to 5,000 people. One of the ways we’re doing that is through a model of having a full suite of services in prosthetic care—the community based rehabilitation [CBR] model, which ROMP piloted in Guatemala. It’s a time-intensive program, but it has huge results in people’s ability to get back out into their communities and have sustainable livelihoods.

We want to replicate that model and expand it geographically throughout the Americas [including the US], because there’s such a huge need of people that don’t have access to prosthetic care. We want to start meeting that need at a level we’ve never been able to do before, and the primary barrier to that is financial. My main role will be in raising the money to help make that happen.

What does the CBR model look like?
Amputees have needs that go beyond prosthetic care. Obviously, this is very understandable for anyone who has an amputation. It’s not just about the prosthesis—it’s your physical health, it’s mental health, physical mobility, quality of life, and your ability to return to work and earn a livelihood. In the CBR model we piloted in Guatemala, we trained nurses and healthcare workers from the local community, who would then go out and visit [amputee] patients in their home twice per month. They’re with these patients for a substantial period of time, going through an in-depth screening with each person. They create an intervention plan for each individual based on their needs.

This goes on for a period of about five months, and throughout that time they’re monitoring what kind of improvements are happening and literally getting people back on their feet—not only through prosthetic care but also all the other aspects that are so important from a rehabilitation perspective. And it’s showing tremendous results.

I’ll say from my personal experience, if I’d had something like CBR right from the get-go, it would have had a tremendous impact on my quality of life and my ability to cope with my amputation.

What other advocacy areas will you be getting involved in?
One thing we’ve talked about within the next five years is launching a mobility collaborative and asking organizations to give 1 percent to mobility. So if their brand benefits from people being active, people getting outside, they can give back 1 percent to help others who don’t yet have that mobility. If these companies were to dedicate even just 1 percent of their efforts to this community, we could see huge change. 

Another thing is that COVID opened the doors to some really incredible partnerships with organizations who had healthcare workers Skype or Zoom with amputees. We were able to gain volunteer hours from thousands of miles away. So basically these volunteers were able to have monthly calls or weekly calls with amputees we otherwise wouldn’t have been able to reach. We partnered with a Canadian organization that had volunteers supporting the CBR program in Guatemala. This is opening up a huge opportunities, and it’s going to increase the number of people that we can impact, which is really exciting.

Is there anything about this particular moment—whether it’s politically, financially, in terms of cultural awareness, or whatever—that make this a particularly good time to step on the accelerator and move things forward?
What we’re seeing that’s really exciting is corporations stepping up to the plate to be involved with the disability community in really incredible ways. You know, for Toyota to choose to have their Super Bowl commercial be focused on a bilateral amputee, that says a lot. And they’ve been doing that consistently over the past few years to feature someone with a disability [in their Super Bowl advertising]. To have that limelight, which is so important to representation and knocking down stereotypes or perceived barriers to what is possible for for individuals with disabilities, I think that is a huge opportunity within the next five years.

Nike just put out a shoe specifically for individuals with disabilities, and it got so much attention. And I think a lot of other people are seeing that it’s not just for an individual with a disability. We all are adaptive every single day, depending on where we’re at in our life, so these are things that benefit everyone. It’s kind of breaking down these boundaries of what it means to be a person with a disability and being isolated into that category. It’s encouraging to see companies starting to treat “adaptive” like it’s not even a separate category. I think that’s really important.

Why do you think these companies feel like it’s in their own bottom-line interest to break down the barriers between “adaptive” versus “normal”?
Could I just clarify something first? We are not saying—you know, we don’t want to get rid of the term “disability” or “disabled.” We should be proud of utilizing those terms. We don’t want to erase disability at all. When I talk about companies erasing that distinction, it’s really focusing on inclusion. That is at the heart of what this is all about. It’s making sure that disability isn’t in its own separate category that gets less resources and less attention. It’s making sure that disability is included as part of the whole package.

When you look at it from a company’s perspective of who their potential customers are, they’re really saying: Hey, anyone and everyone can be our customer. The disability community makes up a large portion of the country. So when a company opens things up so everyone can feel included and feel like they could be a potential customer, it impacts their bottom line.

I feel like we’re talking about a more permeable boundary between “abled” and “disabled,” and people might go back and forth across it multiple times in their lives. When someone has their hip replaced, they lose the use of that limb for a period of weeks, and their mobility is impacted in a way that’s very similar to losing a limb.
Someone I follow on Instagram was just talking about that very spectrum, and they were asking people to pay attention if something happens where you flow into that spectrum of having a disability, whether it’s temporary or permanent. Pay attention to what you’re feeling and how you’re treated and what the barriers are in your life. Encourage people who flow in and out of that spectrum to consider what it’s like to live with a disability every single day. I think that would completely change people’s perspective. It’s a really interesting way to kind of think about it, for people to put themselves in another person’s shoes. This has been said many times, but disability is the one marginalized category that anyone can enter at any point in life. 

If we look ahead, say, 20 years—what sort of long-range progress do you think is possible from building on some of these new alliances and new momentum that is happening right now?
I think what’s really needed is kind of an Americans with Disabilities Act 2.0. It’s been 30 years now, and there has obviously been a lot of progress within that time period. But the overlap of healthcare and disability is hugely important, and we need some groundbreaking legislation to tackle a lot of these issues for the disability community. Prosthetics need to be looked at not just as devices, but as rehabilitative care, which would have an incredible impact on people getting access. That’s definitely an area that we see being kind of huge potential to develop over the next 20 years.

Amplitude
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