Today, as we march toward World Down Syndrome Awareness Day this Sunday, I’m harvesting another post I wrote long ago on my personal blog–one that marks a big step on the journey I’ve often referenced here, the journey from a black-and-white world view to the recognition that all issues have to be weighed together, because they all exert influence on each other.
I wrote this in 2011, and I’m going to leave the text exactly as it stood then.
A year and a half ago, I was working on legislation to ensure that children with disabilities weren’t denied therapies because of their disability. Our sponsor (my mom) was approaching her term limit, and we needed a new one. We knew we had to find a Republican, because the legislature is Republican-controlled. We also knew that putting mandates on insurers could be a tough sell. Still, we felt sure people on both sides of the aisle would recognize that this issue was bigger than political philosophy.
I contacted a former Republican state senator who was well-connected and reportedly supportive on disability issues. I told him what we were hoping to accomplish, and asked him to suggest people to approach as sponsors.
His reply raised my blood pressure for weeks afterward. (Eventually, its presence in my inbox became such an open sore that I had to just delete it. Just thinking about it still gets me going.) However he intended it, it came across as condescending: a man clearly much wiser than this do-gooder little girl, and determined to teach me the error of my ways. His philosophy went something like this:
Insurance is not meant for ordinary care. It’s meant for emergencies, for extraordinary circumstances, cataclysmic events you can’t anticipate. Therapy is normal, ongoing care for kids with special needs; thus, insurers shouldn’t have to pay for it unless they want to. And the government certainly shouldn’t be putting a mandate on them. It’s the responsibility of the families to provide for their children what they think is important. He understood how tough this was for families to accept, but nonetheless that was the way it was.
I’m sure you can appreciate why I hit the roof when I read this email. Never mind that raising a child with special needs is extraordinary circumstances and something you often can’t anticipate. I had the good sense not to respond at all, because there wasn’t one polite thing I could have said. But believe me, I’ve composed many, many responses in my mind. And the more time passes, the more convinced I am of the grave flaw in his argument.
Because this man calls himself prolife—by which he means that he believes abortion is wrong. But respect for life is so much bigger than abortion. It’s an attitude that should permeate all of life, in all its forms and manifestations. Prolife politicians are very good at being outraged by the systematic termination of “imperfect” children. But if you’re going to ask people to shoulder the responsibility of caring for children with disabilities, you can’t abandon them once the child is born.
Missouri has a great program called First Steps, which provides these services. But in rural areas, it’s hard to find providers to come to the home. And First Steps ends at age three, after which kids enter the school system. We’re lucky—we have a great early childhood program where I live. But we’re in an urban area. What about families in small towns without the resources to provide for kids through the schools?
When I was serving on the Children’s Therapy Act committee, we heard stories of people who had to sell their homes to pay for their kids’ treatment, people who deliberately stayed in low-paying jobs so that they would qualify for Medicaid, which does cover these therapies.
How dare politicians stand on a soapbox, claiming that all life is precious, that children with disabilities have a right to live, and then turn their backs on families who actually have them? Do they not realize that, unlike insurance companies, parents can’t negotiate reduced rates? Do they not realize how crippling the expense of therapy becomes? Or do they just not care?
Political philosophy is all well and good, but it cannot be so rigid that it leaves behind those it purports to serve. I happen to think that minimizing regulations is a sound principle—within reason. But the reality is that power companies aren’t going to implement environmental reform if it’s going to cost them money. CEOs aren’t going to give up their huge bonuses just because the economy’s rough on the little guy. Some things MUST be mandated, or they won’t happen at all.
Doesn’t it make more sense to get these kids the treatment they need to become productive, (tax-paying) members of society? And if we don’t, if we shove the disabled population into a corner, behind a wall where their lack of function doesn’t make everyone else uncomfortable—if we don’t show them the respect they are due as human beings by providing them the tools necessary to integrate into society—then how can we be horrified and outraged by the eugenics of aborting the “imperfect”?
I share this example today in the hope that it will open people’s eyes to the many ways besides abortion in which life is disrespected. We’re accustomed to hearing about certain issues: death penalty, abstinence education, end-of-life issues—but respect for life is everywhere, all the time, in every single issue we face as voters. As we head into an election cycle, I beg you: challenge your candidates to man up and be consistent. If you’re going to respect life, you have to respect life in all its forms.