For two decades, Ed Paquin has worked to protect Vermonters with disabilities against abuse, neglect and violation of their rights. A former state House representative and past president of the Vermont Coalition for Disability Rights, he's retiring as the executive director of Disability Rights Vermont on Friday, May 7.
VPR's Mitch Wertlieb spoke with Ed Paquin to reflect on his work for and with Vermonters with disabilities. Their conversation has been edited and condensed for clarity.
Mitch Wertlieb: For people who may not be familiar with your work, I wonder if you can tell us how you first became involved in advocating for the rights of Vermonters with disabilities?
Ed Paquin: Well, I was elected to the Legislature in the 1990 election, and I have to give some credit to the Vermont Center for Independent Living, because when they saw the guy in the wheelchair, as a legislator, they came up and said, "Okay, he's gonna probably be the one to champion some of our bills."
And so I worked closely with them, and a group of people with developmental disabilities from the Northeast Kingdom — who had been involved in a self-determination project — asked to meet with me. It just was such a hopeful, wonderful thing, for someone of my age, who grew up in a generation when folks like that, in Shaftsbury, got on a different bus, and went to a different school.
"My community, small-town community Vermont, really rallied around me and my family, and gave us a tremendous amount of support. And between family, friends, even strangers in my own community, I didn't end up with a focus on what had happened, as much as what do I have to do to make a life after this?" — Ed Paquin
Ed, do you mind if I ask about your own disability? How long have you've been living with it, and how it changed your life, and obviously it changed it in a big way?
It did change it in a big way. I got injured in 1988, through contact with a high-voltage electric wire. I stopped to see if someone was hurt. It did a lot of damage, burn-wise, but it also damaged the nerves around the upper part of my vertebrae, and it affected the control of my nerves in my legs. I can use my feet and my legs to some extent, but since 1988, largely, I've day-to-day got around using a wheelchair.
But I have absolutely been blessed in many ways. My community, small-town community Vermont, really rallied around me and my family, gave us a tremendous amount of support. And between family, friends, even strangers in my own community, I didn't end up with a focus on what had happened, as much as what do I have to do to make a life after this? So the idea of working with a lot of people was pretty appealing to me.
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What do you think have been some of the biggest accomplishments, as you look back on your career, for Vermonters with disabilities, in the years that you've worked with DRVT?
I think we've had a lot of impact. I have to use "we" instead of "I," because anything that I've been able to do has been because of working with an incredible group of people.
When I was a lawmaker, we expanded coverage for many, many Vermonters, with programs like the Vermont Health Access Plan, that covered low-income people who didn't have children, with Medicaid. We worked on issues like building a system for people with developmental disabilities, downsizing and replacing the Vermont State Hospital over the years, shifting the balance in our long-term care into our Choices For Care program, that equalizes entitlement for home-based care with the entitlement for nursing home care. And had some impact on services for people with mental health issues in the corrections department. We addressed uses of force in the Woodside facility. And I'll tell you, it really is a lesson, when you do this work, you see it on a real personal level.
There are other areas that I'm curious about too, things like voting rights. Did you find that your work centered on that at all over these last 18, 20 years?
Absolutely. We've done a good deal of work assessing the accessibility of polling places around the state. We've worked closely with the secretary of state's office to bring the voice of people with disabilities into their planning for systems, what are their options for voting by mail. We're right now part of a large group that is favorably inclined towards the voting reform that's going through the Vermont Legislature right now.
"We have a wonderfully-conceived system of services that we just have not maintained at the level that they need." — Ed Paquin
As you prepare to step down from a leadership role, what are some of the future challenges ahead for Vermont's disabled community that might concern you?
Oh, boy. There's a lot of them. One thing that comes to mind is, there's a very small program called the participant-directed attendant care program, for people with serious physical disabilities, to get assistance for meeting their physical needs, so that those people can work and participate in community events. And it's more flexible than Medicaid. You can hire a family member to help you with your your physical needs. And it is a general-funded program, so you don't need to impoverish yourself to be able to get that service. The program has been frozen for about four years. It really needs to open up. We have a wonderfully-conceived system of services that we just have not maintained at the level that they need.
Well, not to put you on the spot Eq Paquin, but what is next for you? What's the next chapter of your life looking like?
Well, I may get up a little later some mornings than I have in the past. But I am looking forward to connecting with my family out in California. I'm looking forward to probably playing a little more music than I have been in the last few years. And, you know, I used to be a builder and a carpenter, and I've got some projects lined up that are going to keep me pretty busy around my house.
I've been connected with the Center for Independent Living for many years, and I plan to continue as a board member with that. So I think I'll keep my hands in in various and sundry ways, Mitch.
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