Sharing the Journey with Jeneva: Moving Forward with Ken Capone

Jeneva is delighted to interview Ken Capone, Director of People On the Go of Maryland, a statewide self-advocacy organization for people with disabilities. The Maryland State Assembly often turns to Ken to elucidate disability issues in its legislative deliberations.

Tell me about yourself.
I was the second youngest of six children with working parents. Growing up, all I knew was that I had plenty of siblings (three brothers and two sisters) and friends to play with! Being part of the community would not have been possible had my parents followed the doctor's advice and institutionalized me. In those days, doctors recommended institutional placement as the only way to care properly for a child born with a disability. I am grateful that my parents made the decision to raise me at home.

I graduated from high school in 1983 with my peers. After high school, I set my sights on post-secondary education and work. Today I have a full time job; I live on my own. I utilize the state Medicaid waiver program and am able to self-direct my services and supports. I have four direct support professionals who assist me with my daily needs. I started my career as a Quality of Life Surveyor on the Ask Me Project in Maryland. This launched my career in policy and advocacy for people with intellectual and developmental disabilities; I am now the director for People On the Go of Maryland.

Tell me about your disabilities and the adaptations you need to function in an able-bodied world.
My diagnosis is Cerebral Palsy. I rely on staff for my personal needs. Since I don’t have use of my voice, I need technology to help with that. I use a communication device (an iPad) to speak. I use a “headstick” to type; it acts like my hands. I also control my power wheelchair with my headstick. I have an accessible van so I can go work on a daily basis and get to where I need to be.

Tell me about People on the Go, and how you became involved.
People On the Go of Maryland is the state-wide advocacy organization for people with intellectual and developmental disabilities. We have been in existence for 30 years, working on inclusion for all. Through grass roots efforts and strategic partnerships, POG has been instrumental in advancing the rights of people with disabilities throughout the state and around the country. We respect the individuality of our members and are committed to making inclusion a priority so everyone feels empowered, valued, and heard.

I got involved in the group by word of mouth. I attended monthly meetings, and I started doing more with the group, such as testifying on legislation and participating in training.

When POG received a grant from the Maryland Developmental Disability Council, I was asked by the group if I would be the leader of the group and the rest is H-I-S-T-O-R-Y.

What have been your most recent areas of advocacy for disability civil rights? What do you consider your greatest success?
My greatest success is having a bill named after me, “The Ken Capone Equal Employment Act.” People On the Go of Maryland was the lead organization in getting this important piece of legislation passed. The Equal Employment Act eliminates paying people with disabilities a sub-minimum wage in Maryland.

What do you consider your first act of self-advocacy as a child or young adult?
That’s a hard question because I was involved in every decision my parents made for me, which I feel is very important for people with disabilities. That gave me confidence to make decisions. My mother didn’t want me to move out and buy my first condominium, but I made that tough decision to buy it and move out. A couple of years later, I wanted to sell the condominium and buy a single family house. My mother wanted me to stay in the condominium. I made the decision to sell it and bought the house. After a couple of years in the house, my mother’s health deteriorated, so I built an in-law suite on my house, and mom stayed with me for the remainder of her life.

How has advocacy given meaning to your life?
Self-advocacy has given me the knowledge, confidence, and the assurance in myself to assist other people with disabilities in learning how important advocacy is for everyone, not just for people with disabilities. Self-advocacy skills have given me the ability to live the life that I dreamt about as a child. Being employed has given me the life of my own choosing.

If you could define advocacy in a single sentence, what would be your definition?
Advocacy is the empowerment of people to obtain the knowledge to achieve their goals and dreams in life.

In these troubling times, what gives you hope?
I am seeing more institutions close around the country. Virginia just closed one. I am seeing more states ending the practice of paying people a sub-minimum wage, and ending sheltered workshops. I am seeing more states becoming employment-first states. Employment First is a movement to deliver meaningful employment, fair wages, and career advancement for people with disabilities.

I believe that whether you were born with a disability or without, we truly want the same thing: to be employed, contributing citizens; homeowners; and to have relationships and families. Today children who are born with a disability have a better chance at all of these things than those of us born 50 years ago.

Jeneva and Robert Stone on a recent visit to the Senate Office Buildings.

We hope you enjoyed this installment of Sharing the Journey with Jeneva, a new feature on our Little Lobbyists blog. Through these interviews we will share the advocacy journeys of caregiver/parents and disability self-advocates, inspiring us to forge ahead together. Send an email to Jeneva if you have any questions you'd like to see, or if you'd like to be interviewed for a future installment of this series!

Jeneva Stone is the manager of the Little Lobbyists blog. She's worked as a teacher, a government editor, and a Hill staffer. Jeneva is also a writer, with numerous publications in poetry and nonfiction. She lives with her son Robert, who has complex medical needs and disabilities, her husband Roger, their two cats and a dog in Bethesda, Maryland. Her second child, Edith, is currently a student at Middlebury College.