Impact feature issue on Retirement & Aging for People with Intellectual, Developmental, and Other Disabilities

Hailee Yoshizaki-Gibbons: Janice, can you tell me a little about yourself?

Janice Baker-Offutt: I was diagnosed with multiple sclerosis (MS) in my 50s and I am now in my late 60s. I have spent a great deal of time researching health and wellness instead of focusing on illness. I have had many careers, working as a banker, a chemical industry worker, an oil and petroleum worker, and an artist. Due to my MS, I am now [a stay-at-home elder], and rarely leave my house.

What has aging been like for you?

It’s a journey with some anticipated turns and some surprises along the way. Technology has really helped fuse my experience with so many people. I am well beyond who I would have been, communicating and interacting with others. Technology also gives me awareness of what’s going on, in my city, in my home, in the world. It’s a shared experience. I do a lot of experimentation and reinforcement of the exercises and tools I’ve been given to help me on [this journey]. My supports … include adaptation to my situation, and my doctors and therapists who come in and see my environment. It’s a journey that I’m on, relating to myself, relating to this environment. It’s important to listen, not only to the research and the people providing support, but to my body and how it responds. That is helping me push forward. When I think of getting older, I think of peeling onions and pulling the blooms from a lotus blossom. Sometimes it takes more living to appreciate the depths of life, as reflected in the lotus blossom. Also, you never know what a tiny bud will do, but with nurturing, it will bloom and grow. Quality of life means changing what you can change, accepting what you can’t, and finding strength to surprise yourself with what you can do.

Do you think your identity as a Black woman with disabilities has affected your experience of aging?

I’m becoming increasingly aware. Discrimination is something we have to consider in terms of our personal experience, as well as how we react to others and their judgments. My priority is making it constructive. I can see how I change and I am observing changes in others. You accept the currents and you learn how to move in a progressive way. What I’m finding is people are really open and there are things we share in terms of aging and some things that are different. There’s shared confidence in the importance of being honest and expressing regret and appreciation…if we are hurtful…intentionally or unintentionally. I seek to focus on sharing experiences, realities, and tragedies—to me, that is a part of growing.

Interesting, so you view aging as a unifier in a sense across diverse aging people! And it sounds like you believe communication and spirituality can help bridge differences and connect people. How have you navigated continuing to live in your home and your community? Do you worry about being placed in a nursing home?

There’s always the threat of that being a reality if I am not taking care of myself. It’s a moment-to-moment challenge. I don’t really sleep [enough] because I am thinking all the time about how to maintain my well-being and continue to live in my home. [I think about my] diet, exercise, food, sleep. To relax, I listen to music and look at art, the undercurrents of my life.

What strategies have you used to stay out of nursing homes or other institutions?

Rearranging my home, accepting the health that I have, and appreciating being alive. One day, I woke up in the hospital. I had a bladder infection and was taken by ambulance to the emergency room, and that was the closest I’ve gotten to a nursing home or to death. It made me think about the importance of moments of our lives and how they can pivot. I appreciate the responsibility I have and others are taking on my behalf, focusing on feeling, repairing, and healing. I also have support from my husband and dog.

Do you receive any home and community-based services to help you remain in the community?

It’s very limited. Most of my help comes from my husband. I used to pay out of pocket for a home health aide to be here about four to six hours per week, but I was spending most of the money I had so I had to stop. It was $400 per week, and most of that went to the agency, the home health aide was paid very little. But they would help me with everything from brushing my teeth to learning how to get into the shower. Now I just have a nurse who provides support once a week, but she honestly hasn’t taken any pressure off my husband. It’s a matter of balancing, being accommodating, and accepting help when I need it.

As I am aging, I am forced to stop and feel the sun, be appreciative, experience the light, and to enjoy the lift of positive thinking.

What are the positive aspects of aging?

I know I’m not the only one going through this. We can be encouraged by each other. There will be new opportunities to be stronger and feel blessed by little things, like falling asleep and waking up in the morning. It’s important to focus on healing holistically and be grateful. Being still, though I am not a still person. Cooperating with others in new ways, being quiet, listening, recognizing how challenging it is for me, but also knowing I share these challenges with others. As I am aging, I am forced to stop and feel the sun, be appreciative, experience the light, and to enjoy the lift of positive thinking.

What should researchers better understand about someone who has lived with a disability for a long time now?

Make sure your research topic addresses something important. Research should be largely [participant] focused, to get a different perspective, to connect. It’s very powerful. It’s a lock and chain, and the key turns more smoothly when the researcher and aging participants work together. It’s important to really get to know participants more directly and understand how the research can help them in the present and future.