PARTNERS PODCAST 2007 - Kathie Snow I'm Patrick Connelly and I hope that you enjoy this interview with one of the most important authors writing in the field of disability and community living today. Kathy Snow talks about how Partners changed her perception of being a parent of a child with disabilities. Kathie Snow: I got into it to begin with when my children were young; my daughter was five and my son, Benjamin, who – he was sort of my ticket into Partners, because he has a developmental disability. I was in the very first class in Texas, where we lived at the time, in 1990, 1991, and it was just a life changing experience. My husband and I always had the same dreams for Benjamin that we had for Emily. So Partners showed me that those dreams were realistic, whereas other people were telling me "Oh, you're in denial", you know, "you need to be realistic", you know, "your son has this significant disability". Partners showed me that in fact our dreams for Benjamin could come true ,and that was that he just live an ordinary life and have friends, go to school, be successful, get a job, go to college, go off on his own, and live the life of his dreams, and so that's what Partners did for me. We don't do special, we don't do segregated activities, and so he often times was the only child with a disability, or the only child with at least a visible disability. There might have been kids with learning disabilities and stuff. And so I've realized that my son, just by his physical presence, and then ordinary activity, can change perceptions faster than I can in however many presentations I do, because just the physical presence is there that people realize "Oh, okay, yeah, so what, he uses a big power wheelchair and he needs some assisted technology and he might need a little help doing this and that, but he's just a real person. He's a real six year old or a real 8 year old or a real 20 year old in college, or whatever he is." So in that sense I think perceptions are changing because people with disabilities are getting out there and we have to get more people out there. We have this whole "autism epidemic", which is not really an epidemic in my view. Again if you know disability history, it's not unlike the times back in the Twenties and the Thirties of the scare tactics used about the "feeble minded". The difference is that here we are trying to cure these people with autism as apposed to the feeble minded; the fear was "we better put them away". History does repeat itself unless we know history and resolve to go in a different direction. The result of this is that there are many parents of children with autism who are, sadly, believing that their children cannot succeed in any kind of inclusive or general ordinary environment, so they want their kids to be in segregated autism classrooms, or in some places are even wanting to build separate autism schools. I realized years ago it's kind of like what's in the Bible, with so and so begets so and so, that segregation begets segregation and inclusion begets inclusion. So if you are segregated earlier, you are going to be more likely to stay segregated. There's this basic flaw in the system of how the financial streams come down, the funding streams come down to states, and to agencies within states that segments people into age groups, with no one looking at the long term effects of anything. One of the things that I am trying to do as a presenter today is to get parents to see that. Are these services going to enable your child to live the life that he wants and what are going to be the negative outcomes? What we've realized is that we always think there are benefits but its like if you take a pill for an infection for your strep throat it also might cause diarrhea. So there's going to be some negative outcomes and you have to be aware of those and say "Well, I'm willing to take the risks of the side effects, the unintended consequences". Very few people are out there talking about the unintended consequences of what we do with people with disabilities in the service system. My Partners training helped me to always be pushing the envelope, and so my belief is that the system as we have it today should be used as a last resort, and not the first choice. If you absolutely have to have the system, then go for it, but otherwise we've believed in – I think Benjamin probably told you that he's stopped going to therapy at age six – we've learned the negative consequences of making a kid go to therapy, that it makes them feel like they're not okay as a human being, that "we want to change you, you're not okay". And so we realized there are lots of ways that we can give Benjamin the help he needs in more natural environments, and make him feel good about himself, and still give him the assistance that he needs through activities in the community or doing fun stuff at home. Partners teaches people to be... I mean, it is about self advocacy, and of course teaching parents to advocate for their children and not depending on an agency to do everything for them, and then in turn parents teach their children to become their own self advocates. The whole People First, self advocacy movement was about people with disabilities saying, even to their parents, "you don't speak for us, we speak for ourselves", so that's what my son did when he was six and said "I don't want to go to therapy anymore". Patrick Connally: Thank you very much for listening. This show was produced by Disability Rights Enforcement Education Services, helping you help others, the support of the Minnesota Governor's Council on Developmental Disabilities. And we'd like to thank KBT Studios for their help in producing this great audio.