This Pennsylvania Abortion Bill Has Nothing To Do With Helping Children With Down Syndrome Or Their Families | Notice
By Michael Berube
My wife Janet and I have two grown children. Nick, 31, is an architect and lives with his wife in Boston. Jamie, 26, lives with us at State College.
No, he’s not a stranded young man in his twenties living in his parents’ basement. Jamie has Down syndrome. He has a variety of paid and volunteer jobs. He will be living with us for the foreseeable future.
Twenty-seven years ago Janet and I decided to forgo amniocentesis during her pregnancy because (a) the risk of miscarriage was too high and (b) we didn’t think Down syndrome was worth it. worth being screened anyway.
In the grand scheme of things, out of all the varieties of intraspecies differences, we decided that Down syndrome was not that bad.
Guess what? We were right.
In our family, Down syndrome is not a problem. Jamie is a wonderful, warm, gregarious and charming young man.
Jamie has enriched our lives and Nick’s life more than we can tell, and we will always be grateful that he is our son.
But we made this choice freely. Nobody forced us to have Jamie. And as much as we love her, we would never want to force someone else to have a child with Down syndrome. We know that their family situation can be very different from ours.
Instead, we would like to persuade people – especially OB / GYN doctors and genetic counselors – that although Down syndrome is a developmental disability, people with Down syndrome can lead rich and fulfilling lives. And their families too.
But force we are loath to expect future parents to have children with Down syndrome.
Every child should be a wanted child: it is a truism. This is all the more true when the child in question is a disabled child.
Some future parents can be terribly phobic about disability. What is the moral benefit of forcing them to have a child that they can very well feel and abuse?
Some expectant parents may already have as many children as they can handle. Who are you to tell them they need to have one more, but only if it’s a child with Down’s syndrome?
Some expectant parents might be concerned about who will take care of their child with Down syndrome after they leave. Who are you to tell them that this is not a legitimate question?
This is what legislation (HB2050), sponsored by State House Speaker Mike Turzai, R-Allegheny and others, does. It’s been a childbirth obligatory for fetuses with Down syndrome in utero.
Turzai’s bill is now before the House Health Committee and on the fast track for a vote this spring.
Janet and I strongly believe that expectant parents should be able to terminate their pregnancy for any reason.
We also firmly believe that too many people are misinformed about Down syndrome – being told that children with Down syndrome cannot lead meaningful or happy lives. We suspect that some people terminate their pregnancy on this basis.
We will spend our lives doing all we can to fight this misinformation and to tell the world about our fabulous Jamie. But we will never support a law that deprives expectant parents of the right to make difficult decisions on such matters.
The worst thing for us is that bills like Turzai smell of the worst kind of “pro-life” cynicism. Don’t try to tell us that the lawmakers behind HB 2050 care about the lives of people with Down syndrome.
The supporters of this bill are mostly far-right conservatives who voted against any kind of support our Jamie needs – from early intervention programs, to inclusive education, to Medicaid.
If they cared about the well-being of people with Down syndrome, they would be eager to increase health, education and skills training programs that support people with developmental disabilities. Instead, they use Down syndrome as an excuse to roll back reproductive rights and to divide pro-life and pro-choice families of people with Down syndrome.
If you are a parent of one of these families, don’t be fooled for a moment. Supporters of HB 2050 are not supporters of your child. They will devote their careers to reducing the safety net your child needs.
But if you are truly interested in improving the lives of people with Down syndrome, work to improve the lives of people with Down syndrome.
And help us defeat divisive and misleading bills like Turzai’s.
Michael Berube is Edwin Erle Sparks Professor of Literature at Penn State University. He writes from State College, Pa.