Kara Vander Veer is a lady who knows how to have fun.
Whether she is hitting the dance floor at a nightclub, doing vodka shots at a hotel birthday bash, or just having friends over for pizza, she is always the life of the party.
What makes Vander Veer different from any other young woman who likes to have a good time is the fact that she does it all with a significant physical disability.
Vander Veer was born with cerebral palsy, a disorder that severely limits her movement, motor skills and ability to speak. She uses a motorized wheelchair to get around and speaks through a computerized speech device called an Eco, which reads a reflective dot on her forehead that allows her to move a cursor on a screen to type words and select phrases.
Vander Veer, 34, is able to own a home and live independently with the help of personal assistants. She has a master’s degree in disability studies from Syracuse University and works full time as the health care advocate at ARISE, an independent living center and advocacy group for people with disabilities. ARISE stands for Advocacy Recreation Independent Services Education.
Vander Veer works so that other people like her can enjoy the lifestyle of their choice and be as independent as possible.
“As the healthcare advocate at ARISE, I help people transfer out of nursing homes and institutions and into their own homes with the right supports so they can live independently,” Vander Veer said. “I also help people who have homes stay in their homes by advocating for the services they need. My other responsibilities are to help people find doctors, arrange home healthcare, and give presentations at nursing homes.”
The severity of Vander Veer’s disability and her determination to lead an active life put her in a unique position to fight for her consumers. When she counsels people about their options, she speaks from experience and it shows.
“Kara lives what she advocates for,” said Tom McKeown, executive director of ARISE. “Whenever she meets someone in a nursing home or a family member or anyone who suggests that someone with a severe disability can’t live independently, the argument disappears. It’s just so hard to argue against reality right in front of you. She has credibility that I could never have.”
All it takes is a visit to a nursing home with her to see where the passion for her work comes from. Vander Veer’s clients are often people with less severe disabilities than her own, but who wind up in nursing homes for financial reasons or because they don’t know about the alternatives.
Amid the clinical sounds and smells of these facilities, Vander Veer sees people with sound minds living in tiny hospital rooms. To her, their lives seem dictated by staff schedules and policies that allow for very little personal freedom.
She visits nursing homes regularly to help people fill out applications for apartments and independent living centers, navigate bureaucracy and to be there for those who feel like they’ve been abandoned. She hears about the loneliness, the boredom and the resentment of being told what one can and cannot do. She also hears stories about staff members who steal personal belongings and mistreat their charges.
For an independent-minded woman who loves road trips and stays out partying after midnight, seeing these conditions on a weekly basis is heartbreaking. She said the visits are also a constant reminder that she could just as easily be living out her own life in an institution.
“It is hard to stay positive when I meet with people in nursing homes because they always have so much negativity in their lives,” Vander Veer said. “When I see someone in an institution, I think, ‘If I can live independently, they can too.’ I can’t help wondering, how can their family and friends put them there? I hope it is that they just don’t know what other options are available.”
The in-home and at-work assistance that Vander Veer receives and advocates for is dramatically different from other government home care programs and what patients in nursing homes receive. Instead of being at the mercy of the institution or agency providing the service, she decides who works for her. She can, and has fired problematic assistants. She is a boss, not a patient.
“The aid service I get is called Consumer Directed Personal Assistance Program,” Vander Veer said. “My assistants get paid through ARISE and ARISE gets funding through Medicaid. This type of program is far better than the traditional home health care agencies. The person has a lot more control over who comes into their home and what is being done.”
Vander Veer has three personal assistants that she relies on for nearly every physical task, whether it’s getting a file folder off a shelf, bathing or eating breakfast. Given the intimate nature of their job and Vander Veer’s magnetic personality, it’s no surprise that her assistants tend to become close friends and confidants.
“Working for Kara isn’t even like a job,” said Karisa Zuke, who helps Vander Veer at work and at home. “I get to spend time with my friend and have a good time. And I’m paid to do it.”
Vander Veer and Zuke both said the only drawback to this relationship is that people can get too close.
“Sometimes it is hard to maintain the balance between friendship and professionalism,” Vander Veer said. “They get too comfortable and I have to remind them that they have a job to do.”
According to Vander Veer, it costs far less to provide this kind of assistance for someone in the community than it does to keep them in a nursing home. Yet despite their obvious advantages, programs like this are often targeted for elimination by legislators looking to trim state and federal budgets. Part of Vander Veer’s job is to educate lawmakers and other government officials about why these programs are necessary and should continue to receive funding.
When this fails, Vander Veer has another way of getting her point across.
“The form of advocacy I like to do best is protest,” Vander Veer said.
As an active participant in the nationwide disability rights organization ADAPT (originally Americans Disabled for Accessible Public Transit), Vander Veer has attended protests around New York and has traveled to Washington, D.C. to protest on five occasions.
“It is truly a life changing experience,” Vander Veer said. “Hundreds of disabled and non-disabled people gather together to fight for their rights. These protests can last for days and usually several people get arrested. We protest until particular legislators agree to talk to us and change policies. Plus, when we are not protesting, we party hard. We barely sleep for three days. It’s great.”
Vander Veer takes that spirit of protest with her everywhere she goes. She knows that her outlook and lifestyle fly in the face of conventional wisdom about what someone with a severe disability can do and she revels in it. She is not afraid to roll out onto the dance floor, throw her hands up in the air, and dance the night away. And until every single person with a disability can do the same, she won’t quit fighting for them.