The right to choose how and where to live is something most Americans take for granted. Jamie Wolfe has fought to protect that freedom for herself and other people with disabilities. Born in 1966 with arthrogryposis, a lack of muscle development that weakened her lungs and severely limited the use of her arms and legs, Wolfe was all but consigned by doctors to life in an institution. But her parents were determined to raise their daughter in as normal an environment as possible. Wolfe grew up at home in Dover, Del., attended high school and college, and went on to earn a Masters Degree in social work. In each new environment, with the help of family and friends, Wolfe pushed for policy changes to accommodate her disability-related needs. In the course of lobbying for her own rights, Wolfe discovered she had a passion and talent for policy-making and is now one of the leading advocates for the rights of disabled people in Delaware.
Wolfe, now 44, lives on her own in a specially equipped apartment with home care 12 hours a day, primarily at night to ensure she keeps breathing. She needs help eating breakfast and getting dressed in the morning; she travels to her office in a van outfitted to raise and carry her wheelchair. At the Center for Disabilities Studies at the University of Delaware, Wolfe works with state and federal legislators on public policy, serves as liaison with the disability community and teaches undergraduate classes in Disability Studies. She is a former chair of the Delaware Developmental Disabilities Council, where she developed the friendships she credits with keeping her out of a nursing home and keeping her sense of humor intact.
What made you decide to devote yourself to improving the quality of life for other disabled people?
Where I went to college, the main building for my major had a little lift for people who couldn’t use the stairs, but it was too small for power chairs like mine. I had to argue with the administration and show them the door wouldn’t close with my chair in it. I began noticing other things and telling them, “You’re saying it’s accessible, but watch me try to get in here.” I started thinking: my situation is so extreme, if I make things better for myself, it automatically rolls into making things better for other people.
What does responsibility mean to you?
Taking responsibility means knowing your rights: knowing where to go if your rights are violated, or being willing to learn where to go; and being willing to ask for help if you need it. And it means being willing to promote change.
How did you decide on a career in advocacy?
I like policy and figuring out how it actually affects people. At the beach, instead of bringing a novel to read, I’ll bring Medicaid regulations. In 1993 I was in the first class in Partners in Policymaking in Delaware, an advocacy and education training program for people with disabilities and their parents. That’s where I learned that I have rights and I have a voice. As I took the class, I felt I had a mission. If I could get into the state system as a social worker, I could actually start making changes.
Your focus is helping people with disabilities avoid being locked away in institutions. Why is it better to live on your own with so many challenges?
When you say the word “challenge,” it means overcoming something. I don’t see my disability or my situation as overcoming; I see it more as trying to deal with what I have.
Independence doesn’t mean being able to dress yourself; independence means knowing how to dress yourself – being able to make my own decisions and choose the way I want things done. In nursing homes and institutions, they tell you when to eat, when to go to bed, when to take a shower, when you can go out. In one state institution near here there’s a policy saying you can’t take your wheelchair out in the street. Who can say I’m not allowed to do that? Everyone deserves to live the life they choose.
Why did your parents refuse to put you in an institution?
For the most part, they accepted me as a person, not as a disabled kid. My mother was a teacher so she knew a little about the support I could get, and I was daddy’s girl. They asked, “How could we make her quality of life better?” They fought to get me a power chair. Without it I couldn’t get from point A to point B by myself. They said, “We’re not going to let her be dependent on everybody for the rest of her life.”
What legislation are you most proud of helping to get passed?
The Attendant Services Bill I worked on allows disabled people to directly hire and supervise the attendants who assist them. If Medicaid sends the attendant, the rules are very strict: they’re not supposed to drive; they can’t administer medications. Their job is defined by the agency, not me. With this bill I am the employer of record. I direct the services I’m paying for. Even if you don’t qualify for Medicaid, this bill allows you to still hire support so that you won’t be placed in an institution.
What is it like working with the state legislature?
For Attendant Services I sat on floor until the bill was passed at 2 a.m. The legislative session was ending and they weren’t going to bring it up. I had a panic attack and shouted out, “Our bill isn’t done yet – we can’t end!” The senator working with us told them, “We all know Jamie has to get herself home in the dark. It’s 1 a.m. and I don’t have the heart to tell her that we’re not going to bring this bill up after she sat there all day long.” It worked.
What drew you to teaching?
I wanted to teach because it’s a form of advocacy by example. The first thing I teach is that disability is only a part of a person’s life; one should get the whole scheme of what the person needs and wants and take it from there.
I got a phone call from someone who lives in a private nursing home. He said, “I could never live alone. I can’t find a place to live; I can’t feed myself; I need to be turned in bed.” I said, “I need to be turned and I need help eating, and I’ve lived alone since 1985.” And I referred him to Delaware’s The Money Follows The Person grant program, which helps people get out of institutions to live in community.
What do you want people without disabilities to understand about life for those who have them?
Physical access is a form of discrimination. Something as basic as when you go to a store: if there are no electric door openers, a person in a wheelchair can’t go in. I need someone on hand at night to check the machine that helps me breathe while I’m sleeping. As long as there are people willing to do that job and there’s funding to pay them, not allowing me to live in the community is discrimination.
Carolyn Jacobs is a television producer and writer. She has created narrative and documentary programming for AMC, PBS, vh1, Showtime and other networks.