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Judy Winter has spent the past 30 years advocating for families of children with disabilities. Last week the East Lansing resident was selected as a 2019 L’Oréal Paris “Women of Worth” honoree. (Photo by Raymond Holt)
Parenting is hard. Parenting a child with a disability is extremely difficult. Losing that child is unspeakable.
Yet, East Lansing resident Judy Winter was able to write an entire book on what her son, Eric, who had cerebral palsy taught her. She’s spent the past 30 years advocating for families of children with disabilities, and paving the way for inclusion, and equity. Last week, the stories of her son, and the Eric “RicStar” Winter Music Therapy Camp were told on a larger, internationally known platform.
Last week it was announced Winter was selected as a 2019 L’Oréal Paris “Women of Worth” honoree, one of 10 women nationwide. The music therapy camp was awarded $10,000 and is now in the running to receive an additional $25,000, if chosen by the public vote. She received a voice mail message from L’Oréal Paris, after months of an intense application process, interview questions, and multiple qualifying rounds.
“I played it, and I totally lost it,” Winter said of the voice mail message. “In that moment, it was such a moment of recognition that I had dreamed of for Eric, for our family, for the camp, and the campers and the families. All my hard work of thirty years was kind of wrapped up in this emotional ball.”
Over the past three decades, Winter has spent time as a journalist, public speaker, author and activist. Describing herself as a storyteller, Winter is a champion of the underdogs.
“I spend a lot of my time volunteering, because I’m a big believer in volunteering in your community,” Winter said. “Almost all of my volunteer work has had to do with children, championing children in some way—especially children who are struggling or have special needs.”
Ignoring the label
After the difficult birth of her son, Eric, who had cerebral palsy, this mother of two quickly learned about limitations society set on her child.
“They (doctors) said he probably won’t do much—and that’s at a time when that’s what they told parents; what their children with disabilities would not do, would not become,” Winter said. “They talked in labels and limiting language, that was at that time in 1990.”
Winter decided to write a new chapter because what Eric would not do, or not become was not a book she wanted to read. So, she wrote her own, “Breakthrough Parenting for Children with Special Needs: Raising the Bar of Expectations.”
“I decided that my son was going to be raised in the same way we raised our daughter—the best parenting we could give him, the best life opportunities we could give him as a child of value, as a family of value,” she said.
Winter acted as a lone wolf, advocating for her son to be in regular preschool and schools. Conversations regularly had today, international press about inclusivity, and representations in the media of people with differing abilities were not prevalent.
“I’m a big believer in social justice and equality for all,” she said, “And when I saw that I saw, and experienced what I experienced with my son, I had a whole new appreciation and understanding for the fights of minorities. This is the largest minority group in the world, and we still are not talking about them, or inviting them to the table like we should.”
Angry and frustrated, Winter focused on the things Eric could do to live a happy, fulfilling life.
“He was not to us a disabled child, he was our son,” she said. “We use labels to define people with disabilities far too much. What that means is we limit them right from the start. Disability is a part of who someone is, it should never be the defining characteristic, and that’s what my work has been about—is seeing people first. They have value just like everybody else.”
In 2003, this work took on an even bigger role when Eric passed away at the age of 12. Judy describes it as every parent’s worst nightmare. She could have been overcome with grief, checking out, and no one would have blamed her. That’s not what this loving ‘mama bear’ did, however.
Embracing the challenge
“I chose to look at how Eric lived his life in light of his challenges, which was very joyful, very loving, and very kind,” she said. “He lived joyfully, so I made a choice to honor him in the way deserving of his life, and that meant joyfully. That meant helping somebody else on the path that was coming behind us, using what we learned.”
The Eric ‘RicStar’ Winter Music Therapy Camp was formed. The inclusive day camp offers opportunities for musical expression, enjoyment and interactions for all persons with special needs. Eric loved music, and enjoyed his music therapy with Cindy Edgerton, Community Music School’s Director of Music Therapy Clinical Services, whom Winter referred to as “the best in the music therapy profession you can encounter.”
For the past 17 years, the camp has provided experiences for people of all ages with disabilities, much like that of a regular summer camp: everything from art and drama, to dances and the STAR showcase. They offer scholarships to families, since music therapy is frequently not covered by health insurance companies.
The camp aims to lessen the stereotypes, and preconceived notions of people with disabilities, increasing awareness. Just as Eric was full of joy, so is the camp, which takes place each June.
“People achieve things because they have the opportunity, they have the encouragement, they have the support,” Winter said. “And I’ll tell you what – it’s just a place of joy. We can’t forget the power of music, and music therapy. Everybody loves music. We might like different things, but music is a great unifier.”
The camp models inclusion, and brings in teen buddies without disabilities, as partners. More times than not, it’s those partners who end up learning more than the campers.
“We believe we’re going in and we’re teaching and giving to these campers, when in reality, they’re the real teachers. They’re giving us their gifts, they allow the rest of us to be who we really are, because they don’t care about things like if you the prom queen, or you are the football star. What they care about is your heart. That’s one of the greatest lessons.”
It’s something Eric taught her.
“I learned that it wasn’t so much what I had to teach him, it’s what I learned from him. Eric had very limited speech. I learned I needed to quit talking, and listen,” Judy said. “Near the end of his life, he could finally say ‘I love you mom.’ It was painstakingly hard for him to say that. I had to learn to be quiet, and to be present, and not rush him to get that beautiful line out of him. It was an incredible moment.”
With the recent award nomination, it’s an incredible moment for the Winter personally, professionally, and for the camp, which Winter is proud will finally get the recognition it deserves. On a personal side, it’s a touching tribute to her son’s legacy.
“This is a full-circle parenting moment for me in some ways, because I promised Eric we were going to do our best to help other families, and that his story would be told,” she said, “and now his story is international.”
Of the top 10, Winter is the only Michigander, and the first Spartan graduate to be in the running—a great moment for the East Lansing community.
“This is a good news story. There’s good things going on at that university, and in our town,” she said. “We too often look elsewhere for those things. There’s so many wonderful people, including women, in this area, in this community in Mid-Michigan, doing wonderful things. Too often, we don’t tell their stories.”
At the end of the day, it’s Eric’s story, and it’s a success story because society is finally changing its views on differing abilities, inclusion, and equity. It’s a story that Winter has felt proud, and humbled to be the voice of for countless families.
“I’ve had to feel like there was somebody behind me who could take the baton, and now I feel like that’s there,” she said. “Society is looking differently, it’s covered in the media so much. When I first started, you couldn’t find a success story. I had to write my own, because they didn’t exist.”
Within the L'Oréal Paris Top 10 alone, there is a nominee with Down syndrome, Winter’s advocacy work, and another nominee who advocates for families through the educational system.
“I’m very proud of L'Oréal Paris for the choices they made this year, because there’s a lot of diversity with a lot of women doing pretty incredible work in their communities and beyond.” Continually inspired by Eunice Kennedy Shriver and the starting of the Special Olympics in her backyard, this journalist/public speaker/author/activist/powerhouse looks to that as an example, and reminder to keep going.
“Everyone needs an example, and I hope I’ve been an example for others. That would be my greatest claim to fame—is that I’ve made it a little bit easier for another parent, or another child, or another adult who has special needs.”
Voting for the L'Oréal Paris “Women of Worth” takes place until Nov. 15. You can vote once daily here.
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