Snow is falling and the temperature is dropping rapidly — winter has come. Volleyball, spikeball and other summer sports are giving way to skiing and snowboarding.
Beaches will be abandoned for ski hills, and tracks will be replaced for basketball courts while people of all abilities look for new ways to exercise and stay healthy.
But it isn’t easy for everybody to switch sports and stay active.
People with disabilities that struggle staying active during the summer face even more difficulties during the winter. Snow and ice covering the sidewalks make it far more difficult to walk, and the cold temperatures keep most inside.
According to the Centers for Disease Control and Prevention, over 40 million Americans have a physical disability. Staying active is nearly impossible without some form of coaching, training or equipment for many of these adults, however very little is done nationwide to help those with disabilities get — and stay — active.
Nicole Ver Kuilen has been an amputee since she was 10 years old, after a battle with bone cancer took her left leg. She has seen what she calls a “lack of care” play out in her own life time after time. Ver Kuilen is a self-described athlete who loved spending time outside before cancer changed her life, but said she didn’t want that to change after her amputation.
However, she quickly learned that living the active life she had before would be nearly impossible.
“That summer I lost my leg, the biggest thing I wanted to do was play in the water with my friends, but I was shocked to realize that the prosthetic that they had provided for me wasn’t waterproof,” she said.
The leg that can’t be taken in the water is the only one covered by Ver Kuilen’s insurance, which meant if she wanted to play in the water with her friends, it could cost her family as much as $20,000.
“It’s like deciding if my child is going to college, or do we get them a car or do we get them a limb,” she said.
If you are a person with a lower-body physical disability — and you don’t have an extra $20,000 laying around — you’d be forced to use the insurance-covered walking prosthesis to exercise, which is exactly what Ver Kuilen did. She found there were consequences for exercising with the walking prosthesis though, as it would constantly break, or leave her with painful sores on her leg.
“I started experiencing a lot of debilitating overcompensation on the right side of my body after runs,” she said. “My knees, hip and back started breaking down. I was in physical therapy twice a week, just in constant pain.”
The walking leg caused her body to run differently, which led to bones being pushed out of place along with debilitating pain, but paying $20,000 for a running leg was still an impossible task for Van Kuilen. Insurance companies deemed a running leg for her a “luxury item” and “not medically necessary,” even while her walking leg re-shaped her body.
Ver Kuilen’s story of being dismissed and ignored by the healthcare industry is just one of many that some people with disabilities have experienced.
Mark Graser is a retiree who suffers from cerebral ataxia, a disease which attacks the cerebellum and destroys muscle coordination. As the disease progressed, he fell off multiple ladders at his workplace, which led to tears in both his knees as well as the removal of both his ACLs and MCLs.
Graser was let go from his job, and was labeled as physically disabled by doctors shortly thereafter. All of a sudden, his life had been thrown in flux — he could no longer walk without falling and had no energy.
Health professionals at the hospital helped Graser get active and use his legs, but once he was sent home with just a wheelchair, he had no idea what to do.
The rehabilitation process was long and difficult, with very little help from his doctors and trainers.
“[Doctors] had me go to the Princeton Club, and they fit you into general population and expect that you know what to do,” Graser said. “They got all this equipment … but I don’t know how to use it. They’d ask, ‘Well, what do you want to work on?’ I have no idea.”
Graser could barely stand — let alone exercise — but he was told repeatedly to stroll into the Princeton Club and “work out” without help, in order to gain strength back in his knees.
“I had no experience with what to do or how I was going to do it. A dismal depression over if I was going to be able to [walk] began to set in,” he said.
Losing a limb is something no person should have to deal with alone, however, there seems to be a pattern of the health industry of “discriminating against people with disabilities,” according to Ver Kuilen.
The physical and mental conditions Ver Kuilen and Graser face could be addressed by insurance companies through comprehensive care for people with disabilities.
The American government is already providing this coverage to veterans through the VA, along with Medicare and Medicaid offering comprehensive care for those with physical disabilities. Yet, those companies often see prosthetic limbs or training on how to walk post-injury as non-essential.
There are people advocating for folx with disabilities so that those norms in the healthcare industry are changed. One of those people is Ver Kuilen, who founded the non-profit Forrest Stump two years ago in hopes of changing the perception of those with disabilities.
“I’m an amputee for the rest of my life, so it felt like I needed to do something, I needed to take action,” she said. “One voice is enough to change the status quo.”
Ver Kuilen completed a 1,500-mile triathlon from Seattle to San Diego with her walking leg to show that amputees are just as capable, but the policies and restrictions preventing her from having a running leg makes things like the hike more challenging. She was able to eventually make it through the journey, and completed a documentary highlighting the difficulties she faced.
Graser is fighting the status quo in his own way. He found the Adapted Fitness program at the UW-Madison, where he now works out weekly.
The program is run by Tim Gattenby, a long-time member of the university’s kinesiology department, and it focuses on recovering lost mobility in people with disabilities.
Student volunteers and trained physical trainers work together with clients who have a disability, working out together for an hour at a time, two or three times a week. The program has been helping people with disabilities for years, and interest for similarly designed programs is beginning to appear across the country.
When Graser joined, he was barely able to use his legs. Now, just a few years later Graser is more focused on breaking his friends’ lifting records than he is concentrating on walking.
“I believe that a lot of people with disabilities have their hope taken from them when people in the medical profession say, ‘Get used to the fact that your disability has these typical characteristics,’ and it’s going to be this way,” Gattenby said.
Because he sees a lack of proper care in the medical field, Gattenby decided to make his own program to help build people with disabilities back up.
The Adapted Fitness program was able to send Graser to Colorado just over a year ago, where he learned how to ski for the first time.
“It’s still the screensaver on my phone. The whole experience changed me, all my life I was hearing people say ‘You can’t do that,’ ‘You can’t walk’ or ‘You can’t climb,’” Graser said. “But here was a group of people telling me, ‘You can ski, why not?’ and it changed my whole perception, I was so motivated by it.”
Ver Kuilen met lawmakers in 2018 to discuss disability laws and has been working with grassroots activists to pass insurance fairness legislation in 21 states. The bill would eliminate prosthetic discrimination in private insurance, making sure that everyone in America will get the same level of care Medicaid and Medicare provide after becoming physically disabled.
“The legislation requires that private insurance cover prosthetics at the same level as Medicare and Medicaid,” Ver Kuilen said. “And that they’re not allowed to get around any loopholes or provide any lower levels of care.”
Efforts to pass the bill in every state are ongoing, and something that Ver Kuilen and Forrest Stump have been working on for years.
However, for the millions of people living with a disability in states that haven’t passed the bill, getting that critical exercise we all need is still extremely difficult, and not getting easier any time soon.
