Regular Lives for Families with Children with Disabilities
Interview with Kathie Snow
Produced by Minnesota Governor's Council on Developmental Disabilities
What Has Been the Impact of Partners in Policymaking®?
Kathie Snow: Partners in Policymaking® is life changing. It really and truly changed our family's life. It changed my son's life. When Benjamin… I was in Partners when Benjamin was three. Again, I learned so much from Colleen Wieck and Ed Roberts and other people that were the early trainers in my first… I was in the first class of Texas Partners. And so I learned so much from them. But the other thing was learning from the adults with disabilities who, again, told me what it was like to be taken to therapy all their lives, told me what it was like to be segregated, told me what it was like for their lives as adults and basically getting a lot of not okay messages from therapy. You're not okay. You're not okay from therapy. You're not okay, you don't belong from being segregated. As adults, people are still writing goals for them. And they're like, "Kathie, I wish all the people that are supposed to care about me could love me and accept me just the way I am and not try to change me."
So, as a parent, you're given this information by service providers and stuff about this is the path, and the path is you need all these services, basically cradle to the grave services. And here are the real life stories of people with disabilities that, most of us that are parents, we will get into a parents' support group and we will get to know other parents and maybe we'll learn some other stuff from other parents.
But the reality is it's the people with disabilities, including our own children who are the real experts. And I would have never had the opportunity or would not have understood the value of learning from adults with disabilities if it had not been for Partners. Again, I was a parent of a three year old. I was in a few support groups. I was in the Cerebral Palsy Association, you know, some other ones. I don't think I would have ever thought, oh I better go meet adults with developmental disabilities because they can really teach me what's really important. So Partners is stand-alone unique in that regard.
I mean you can go to parent conferences, meet a bunch of parents. adults with disabilities have their conferences, but Partners is the only thing that I know of that puts the two groups together. And so parents learn so much from the extraordinary presenters that a quality replication model of Partners in Policymaking® brings. But parents are also able to learn from the people with disabilities themselves, who are, again, our greatest teachers. So certainly Ed Roberts, as a presenter and as a person with a disability, totally started shaping my life in a different way. And, of course, that in turn led to me doing stuff differently on my son's behalf, other people with disabilities who were in my class.
I wish that every state had Partners in Policymaking®. I wish that every state committed to doing a replication model that included the full eight months because every single weekend was powerful in and of itself, and, of course, it was all connected and there was a rhythm to it and there was a reason why you have certain topics in which order.
It all built on itself so that it was this extraordinary learning experience just from the facts and the information you learned. But it was also an extraordinary personal and emotional experience… that there are some states that are doing it less or they're doing it only like online or different kinds of things, that you miss that connection. And me being able to sit and eat dinner with a man with a disability who can tell me his life story, I could not have gotten that anywhere else. That cannot be replicated any other way except with the personal connection.
And so it's life changing to the degree that it made me a totally different person than I was before. And, as a result, it made my son's life and our entire family's life different than it was before. I'm like a lot of parents who have been through a good quality Partners program that says there was life before Partners and then there was life after Partners, and I get goose bumps telling you that.
But I, for years, and would still say the same thing today, it's been… I was in Partners in 1990, so however many years that was ago, 23 years ago, if my math is right… that Partners probably saved a lot of marriages, although they never talked about marriage, but it was just the things that you learned helped you be a better human being, not just a better parent, but a better human being all the way around.
And I realized years ago, this is what I would say before and what I say now, that the most important things I've done in my life are to get married, to have my kids, and to be in Partners in Policymaking®. I mean that's the impact that it's had on my life and I know it's had on the lives of thousands of other graduates and participants.
And I'm very, very fortunate that I started getting invited to present at Partners in Policymaking® training sessions around the country, and so I just feel so fortunate to be able to have been a participant and now to be able to get to know Partners participants in states across the country, and learn from them and see the progress. And it's a gift that just keeps on giving.