I gradually got more and more involved in advocating for a level of services, or better put—support—outside of the school system. So for example, when you have a child who experiences severe disability like Ben, while they are in school because of the IDEA (Individuals with Disabilities Education Improvement Act), there are a lot of experts, support givers and professionals who are working with your child. Outside of the school day, that still was very, very challenging, and on some level it still is. So if you are a parent and you need to work and you can’t find an after-school program of weekend activity for your child that allows you to keep your schedule for work, that’s a real financial challenge to the family.
In any of your elected roles did you continue to work on disability issues?
One of the most significant ones was state Senate Bill 138 (passed in 2013), which made it clear that people who experienced disabilities and their families actually had a right to the support that the state was promising them, so that they weren’t constantly put on a waiting list for the kind of community-based integrative supports that New Hampshire has been so proud of.
But more broadly, the perspective I bring to this role is the realization that our country’s story is really a story of including more and more people generation to generation. Our founders said that everybody mattered, everybody counted. But we all know that they didn’t count everybody at the beginning. They did somehow have confidence that each generation of Americans would do a better job with it, and would bring more and more people in from the margins, and into the heart and soul of our democracy. That perspective of realizing what a difference inclusion has meant to my family has informed all the work I do.
What lessons have you learned from working on disability issues?
It’s taught me that inclusion is really hard. It’s physically demanding. It requires that people stop and slow down and think about the way they do things and change what is sometimes the easiest for them so that they can include others. They don’t always see the benefit of that right away. That’s hard work. When you think about the Americans with Disabilities Act, and what it takes for employers sometimes to accommodate a person with disabilities, when we talk about reasonable accommodations—it’s doable, but the payoff isn’t always obvious right away. One of the things being Ben’s mom has taught me is that though this work is hard, it is incredibly worth doing.
Given the degree of Ben’s disabilities, were his needs a factor in determining whether you would run for U.S. Senate?
Ben, while he can’t speak and he can’t walk, is very mentally and cognitively alert and able, and so he participates in these decisions in our family too. So that’s always the framework that we have as we make decisions. Which is not only what’s good for our family, but what kind of impact can we have as a family, together. And I think in that way my family has a lot in common with other families who happen to have a member who runs for office. It’s a family decision about how we can best serve and how we can best impact the lives of the people we’re representing or hope to represent.