My name is Emily Chesnut and this my daughter Nora, who will be seven at the end of the month. I am here to speak on behalf of my family and many friends who also love someone with Down syndrome. I am especially thankful to Dr. Leesha Thrower, a dear friend who couldn’t make it today, but shared her thoughts in an editorial last December, parts of which I am sharing today.
When they signed this bill, Governor Kasich and state legislators used my child as a political tool to promote their own agenda. They do not care about Nora. If they did, they would be using their valuable time to make sure that every child born with Down syndrome has what they need to live a healthy, full life.
They should be drafting a bill to guarantee affordable health insurance coverage for the medical treatments and therapy children with Down syndrome need. Half of all individuals with Down syndrome have congenital heart defects, including Nora who had open heart surgery at 7 months old. Individuals with Down syndrome are more likely to have issues with their eyes, Nora has had eye surgery. They are more likely to have gastro intestinal issues, respiratory issues, thyroid issues, hearing issues/ hearing loss. And the list goes on. And the good news is that these medical issues are treatable with positive outcomes. Individuals with Down syndrome thrive when given supports such as occupational therapy, speech therapy, glasses, hearing aids, walkers, and many more tools. Politicians should be debating the need for inclusion in schools, employment opportunities and independent living.
I expect my elected officials to speak up for my family and my community, not to use my daughter and her peers as a pawn in a political effort that is only going to harm women and make it harder for them to make the right decision for them and their families.
Having a child with Down syndrome was life-changing and has given me new paths in life that I never would have found before Nora. I advocate so that future families see more positives than negatives, so that inclusion is the norm, so that a diagnosis of Down syndrome isn’t as scary.
No parent should have to embark on this journey uninformed. They should be able to have a frank, honest conversation with their doctor about what it will mean to have a child with Down syndrome. They should have all the information and be encouraged to ask more questions, so they can make this very personal decision freely, without the presence of politicians in the exam room. This bill does nothing to help with that.
I understand that talking about Down syndrome tugs at heartstrings. I understand the fierce pride and protectiveness that parents of children with Down syndrome feel. I feel it too.
This bill is not about Down syndrome. It is not about protecting our children or making their lives better.
This bill is about putting another hurdle in front of women who have a constitutional right to make their own decisions about their bodies and their futures. Nora and I will not stand for that.
*This blog was co-authored by Dr. Leesha Thrower*