Know Your Madisonian: Lisa Pugh

July 24--Lisa Pugh, public policy director for Disability Rights Wisconsin, was named in May to the President's Committee for People with Intellectual Disabilities. The new version of the committee will meet for the first time by September.

Pugh, 46, grew up in Horicon and graduated from UW-Oshkosh. She was a reporter at WBAY-TV in Green Bay and worked in corporate communications before becoming an advocate for people with disabilities.

She lives in Madison with husband Michael and children McKenna, 17, Erika, 15, and Luke, 10. Erika has a significant intellectual disability.

Q: How did you become an advocate for people with disabilities?

A: My daughter was born with two holes in her heart, lots of really complicated medical issues and a rare diagnosis that meant she would have an intellectual disability for life.

I quit my job so I could focus full-time on her needs. She had heart surgery at 4 months old and a feeding tube placed at 6 months old. We were carrying oxygen around. It was a very stressful time. I remember butting up against problems I thought were ridiculous, like an insurance policy that made me write a letter to my state legislator. I got a really nice response. I led a campaign in Wisconsin to increase funding for birth-to-3 programs. We delivered about 500 teddy bears to the Capitol and brought dozens of parents to testify. I thought, parents have a voice and I can be a leader in this.

Q: How has Erika's disability affected her and you?

A: Erika has Rubinstein-Taybi syndrome. At first it was really devastating. But the geneticist said, "Live your life as you would otherwise. Make sure you keep the same dreams and vision for your family." I still think about that.

We include Erika in everything. We expect she'll have a job some day. But it doesn't come without challenges. Erika is non-verbal. She has a few sight words, but she's not reading. She doesn't do grade-level work. Still, she's a very happy teenager. She listens to rap music in her bedroom and likes to be alone, close the door and turn the volume up. We feel very fortunate to live in Madison. This is a very inclusive-minded community.

Q: Have there been challenges in trying to integrate her?

A: In kindergarten, we wanted her to be included. We ran up against a different philosophy. They felt her best education would happen in a segregated environment. We wanted her to learn from her peers, to get birthday party invitations. We've cried many tears about other people not having that vision. I try to help other parents not have those heartbreaks.

Q: What activities is she involved in?

A: At Sennett Middle School, she was on the dance team. She loved to be on stage. Did she do all the dance moves correctly? No. Did she learn what it was like to perform? Yes. She also does strings. She doesn't have the dexterity to actually play the violin, but she can get the violin out of the case, put the case back where it belongs and put her music up on the stand. The orchestra kids know her, say hello to her and sit next to her on the bus. That's the importance of inclusion.

Q: What is the most important public policy issue today for people with disabilities?

A: Employment. For people with significant intellectual disabilities like Erika, there are very limited options. In too many communities, they end up in sheltered workshops making sub-minimum wage, which means they're living a life of poverty forever. ... In Madison and Dane County, we've done a really good job employing people with disabilities . I hope that by the time Erika turns 21 and exits public school, she'll be able to be employed and live a pretty independent life.

Q: What do you hope the president's committee will accomplish?

A: I wouldn't be surprised if the committee works on employment or something around family support. As systems get stretched and rely more on families to be the caregivers, we're looking more at what the caregiver needs, the family needs, to stay out of crisis and keep the person with a disability out of an institution.

-- Interview by David Wahlberg

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