The 36 million American women who are part of the disability community face daily challenges in a world that’s not designed to meet their needs. Here, the stories of three who overcame obstacles to live independently and happily on their own terms.
Written by Gioia Patton | Photos by Mary Helen Nunn
In her apartment, you might find Jackie K. listening to audiobooks or watching Cincinnati Reds baseball or UK football. She’s often on her iPad because it’s easy to use; she can flip through virtual books or magazines and browse online with one finger. Jackie gets out and about too — using TARC3 services to go to nearby Crescent Hill Library, her monthly book club or meetings at Veterans of Foreign Wars Auxiliary National Organization, where she’s an officer. She is proud of her lifetime membership in this community organization.
At 71 and a wheelchair user (with use of her right hand) who has Cerebral Palsy, Jackie is also fiercely proud of the independent lifestyle she had to fight hard to attain. “It took years for my support group at the Center for Accessible Living to get me out of a nursing home, which they did in 1984,” she says. “I was there for six years and they weren’t doing what they were supposed to be doing (in terms of therapies) and I didn’t have any independence.”
Now living on her own in a bustling neighborhood, hers is an interesting, active life filled with friendships, book groups, church, community engagement and her favorite sports teams.
“What I love most about it is having choices. I choose what I want to do, what time I go places, what time I want to eat and go to bed,” says Jackie.
She does have some home services for day-to-day support. She has two advocates from the Center for Accessible Living who help with a variety of organizational, financial and daily tasks as well as home health aides who visit twice daily to get her in and out of bed and help with grooming and meals. These life assists enable Jackie to live a life of her own choosing and full of meaning.
“I was told at the nursing home that I’d never survive on my own, but I’ve been doing it for a long time,” she says. “I have David and B.J. always on my side; I’m in a Bible class with B.J at Southeast Christian Church every Sunday.” Jackie knows that the way she chooses to live her life is an example to others. “Just by my presence, I teach other people that I have a right to be here.”
Pictures of Felicia D.’s great grandmother who raised her “and was the most important person in her life” are placed around her neat and tidy apartment in Clifton. Her great grandmother would be proud of the independent life that Felicia, age 36 and born with a Mild Intellectual Disability, has achieved for herself. “To me, living independently means freedom,” she says. “I can do what I want to do, and don’t have to always rely on others. I can do things without having to get permission, and I can cook my own meals.”
While she used to work in the OB/GYN department at Norton Suburban, Felicia was laid off during the pandemic. She is hoping to find a new job, but for now she enjoys her leisure time– playing with her cat, watching TV, going to the movies, shopping and getting her nails done. She enjoys “just being out,” which she does with the support of the Cedar Lake community-based services– a program that provides a Direct Support Professional (DSP) who helps to manage many tasks of day-to-day living (finances, medication, routine household chores, shopping, relationship building) and helps set and achieve goals related to independence and community integration.
With those services in place and with support from family “all over the country,” Felicia acts as her own guardian. An uncle pitches in on financial matters; she says she’s “not very good with counting and math.” With these forms of assistance built seamlessly into her routine, Felicia keeps her life running smoothly– happily juggling work, pet care and friendships. Her biggest issue with interactions with some non-disabled people? “I don’t like when people talk slowly to me.” she says. “They slow their words down because they think I don’t understand.” Her advice for those aiming to be inclusive of the disability community? “Be more understanding and treat us like everyone else.”
You might hear her singing from outside her art-filled Clifton apartment. And when you walk in the door, the first thing you’ll notice is original artwork everywhere. Nikki P., who is 38 and was born with Down syndrome, is a prolific artist whose Clifton home looks more like an art gallery with walls decorated with paintings, drawings and anime. While she works several days a week at a local Moby Dick, Nikki fills much of her free time with her many creative pursuits – which also includes writing.
When she wants to wind down, Nikki says, “I watch TV, read my books, play games on my tablet or go on outings.” To navigate the tasks of daily life, she has a Direct Support Professional (DSP) who also makes sure that Nikki has opportunities to engage in the community and make friends. She is grateful for the freedom she has gained since moving out of a round-the-clock, staffed residence. She is now taking advantage of the Cedar Lake community-based services that have given her the ability to maintain her own apartment, keep a job and develop her many artistic pursuits. “I don’t have to worry about what other people want to do,” she says. “I can go to the movies or sleep all day or eat ice cream in the morning. And it’s a lot quieter than where I used to live.”
When asked about the biggest challenges and frustrations that she experiences as someone living with a disability, she says, “Some people don’t know what I’m saying. And I don’t like when they talk to me like I’m a baby.” Her advice to members of the non-disabled community? “Just be nice.”