Tell Me Something Good – Disability Voting Rights Week

At My Choice Wisconsin, our staff regularly receive uplifting emails from our Member Advisory Committee. These feel-good messages make our week and we’re pleased they have agreed to include you in sharing their positive thoughts!

My name is Kristi, and I am one of the newest members of the My Choice Wisconsin Member Advisory Committee. October is Spina Bifida Awareness Month and October 25 is World Spina Bifida Day. As a person that lives with Spina Bifida every day, I want to raise awareness.

A person smiling at camera

Description automatically generatedTo raise awareness, I think we need to educate, advocate, and celebrate. So, I’ll try to do a little of each here.

EDUCATE: Here is some information that I got from the Spina Bifida Association web page. Spina Bifida is a birth defect; it is something you are born with. The severity of Spina Bifida depends where it occurs on the spine. The higher on the spine the lesion is, the greater the complications. Individuals with Spina Bifida differ in mobility, sensation, and psychological development. Like I need a wheelchair for mobility but others with Spina Bifida do not. No two people with Spina Bifida are alike. In the United States about 1,400 babies are born every year with Spina Bifida. Babies born with Spina Bifida usually undergo surgery in the first few days of their life. My closure surgery was in the first few hours of my life.

ADVOCATE: To advocate, I must speak up and have my voice heard. That’s one of the reasons I joined the MCW Member Advisory Committee earlier this year. I was just named to the CCLS (Creative Community Living Services, Inc.) Board of Directors. I am a self-advocate leader for People First Wisconsin. I completed the Partners in Policymaking program through the Wisconsin Board for People with Developmental Disabilities. I was a presenter at the last two Self Determination Conferences here in Wisconsin. And I’m just getting started!

 CELEBRATE: I live my life to the fullest. I celebrate life every chance I get. I have ziplined. I have been taken up a bluff/cliff in my wheelchair. I have lived in my own apartment for the last nine years. I was at the P!NK concert at American Family Field this past August. I have been a model in the “This is How We Roll” fashion shows. I collect monkey stuffed animals, I currently have over 100 of them, along with soap dispensers, pictures, towels etc. that have monkeys on them. I have Spina Bifida and I thrive.

Unfortunately, I hear from new parents that doctors are still describing Spina Bifida in totally negative terms. They tell new parents that they child will probably never walk or talk or go to school or get a job. For me, living with Spina Bifida can have its challenges but it doesn’t stop me from living life the way I want. I can do most everything that my friends do, just sometimes in a slightly different way. When given the chance, most of us with Spina Bifida are thriving and living full lives.