My name is Kevin Smith. I’m a person with a developmental disability. I have cerebral palsy with secondary blindness. But I don’t let that limit my ability to live life to the fullest extent possible. I was told I would never live on my own or have a job. No one thought I would ever get married or own a car. But those people were looking at my disabilities, not my abilities. I had my own apartment for more than 20 years, but now I live with my wife in our own house.
We have skills, feelings and rights, like everyone else.
I started out working in our local sheltered workshop counting marbles, but now I work as a professional at The Arc as the People First coordinator for West Virginia. I own my own van (even though I can’t drive), and on April 28, I walked down the aisle for the second time. I wouldn’t have been able to achieve any of those things without self-advocacy and People First.
I got started with People First when I was nominated to go to a national conference held in Tennessee back in 1991. That’s where I learned that I had the right to speak up for what I wanted.
The last DD institution
When I got back, I was asked to testify in front of our legislature. I told them about how I had been living in my own apartment and that other people with disabilities could do the same if they had help. We helped to close the last DD institution in West Virginia.
After that, The Arc of Wood County applied for a self-advocacy grant to the West Virginia Developmental Disabilities Council. I was hired as the first self-advocate coordinator for People First of West Virginia. We started eight chapters back then, all across West Virginia. In 1994 we held our first annual conference.
Unfortunately the grant ran out, and we could fund only the annual conference after that. Fast forward to 2008. The Arc of West Virginia wrote a new grant for self-advocacy and got it.
They hired the second coordinator, or I should say recycled, because it was me again. Now we have 18 local chapters across West Virginia, and our annual conference, which averages 240 people, is in its 19th year. We have developed a curriculum to take into high schools so we can train our young people to be the next generation of self-advocates. We are getting ready to hold our first youth conference.
People First of West Virginia is very active. The state advisory board is made up of seven elected officers and two representatives from each local chapter, and every person on it has a developmental disability. They help run the organization and make the decisions about what we do throughout the year. We have four advisory board meetings every year and hold monthly teleconferences to keep in touch with local chapters. Local chapters hold regular meetings to share successes and discuss problems.
Every year we partner with the Fairshake Network to hold Disability Advocacy Day at our state’s capitol. There, people with disabilities from all over the state receive training on the legislative process and how to advocate with lawmakers. Then we spend the day meeting with our elected representatives.
People First and the self-advocacy philosophy have given me a lot of opportunities. I speak all across the state and present self-advocacy and the People First program everywhere I go. I have been to Alaska to attend a conference on rural independent living.
With the information I learned out there, our state chapter is going to try and develop a program to provide more accessible transportation for people with disabilities.
Highlights and accomplishments
I went to the White House as a representative of our local chapter of The Arc for a briefing on disability policies. While I was there I heard President Obama speak and shook his hand! I was also chosen to be a part of a statewide team that went to Baltimore for a regional self-advocacy summit sponsored by the Administration on Developmental Disabilities.
Along with seven other states and territories, we presented the highlights and accomplishments of self-advocacy programs in our state. We discussed the challenges self-advocates face and helped develop plans that would address some of them.
I still don’t feel like I have done that much as I look at self-advocacy. Each day is a new challenge with new people to get on board. As we go down life’s path with self-advocacy, we have to look across our own state and across the country for new self-advocates and new young leaders to take charge one of these days. Self-advocates have to be at the table, discussing things that are relevant to their lives and their services.
I’m famous for this quote across West Virginia, “If you’re not at the table, you’re on the menu.” Other people may be big-hearted and want to take control because they think they know best, but the only one who knows what you want is you. So be sure you are at the table, not on the menu.
As a leader in self-advocacy, the message I want to put out there is to make your choices, live life, be happy and believe in self-advocacy.