Autism Speaks Lorri Unumb, Vice President, State Government Affairs, remembers her own run in with harassment and her crusade to get crucial insurance reform passed.
Unumb travels the country advocating for families and indivuals facing the challenges of autism. You can follow her work on the "On The Road For Autism Reform" blog launching next week.
Recently an autism family in Ontario received a letter from a neighbor suggesting the family either move or euthanize their child with autism. I am the mother of a 12-year-old boy, Ryan, who was diagnosed with autism before he turned two and this letter conjured up some old memories for me. As with many autism families, the diagnosis rocked my world and changed my priorities. My husband and I spent years trying to secure medically necessary therapies for Ryan and considered ourselves lucky to be in a position to make sufficient financial sacrifices to privately pay for such therapy. The sacrifices were significant, including selling our house to move into a less expensive house, but they were worth it. My heart ached, though, for families who were not in a position to earn-and-sacrifice a second salary or sell a home in order to afford treatment. In 2005, my heartache led me to write legislation requiring health insurance to cover doctor-prescribed autism treatment. It passed in my home state of South Carolina in 2007 and became known as “Ryan’s Law.”
“Ryan’s Law” was a hotly-debated and controversial bill in the South Carolina General Assembly, and I was so proud of the South Carolina legislators who championed and supported the cause. Ultimately, every single legislator voted in favor of “Ryan’s Law,” even after the governor of South Carolina vetoed the bill. The passage of “Ryan’s Law” attracted quite a bit of media attention and public interest, particularly among autism families across the country.
At the time, I lived in Charleston, South Carolina – more than two hours from our state capitol of Columbia.I was so pleased when the local paper, The Charleston Post & Courier, contacted me to do a story about the passage of “Ryan’s Law.” The October 2007 article began:
Lorri Unumb did it for the parents who couldn't afford to pay for the intensive therapies, for the people who delivered pizzas on the side to put a dent in mounting therapy bills; and she did it for Ryan. The Mount Pleasant attorney and mother of a child with autism joined forces with other moms to battle insurance companies at the Statehouse for the past two years to win coverage for treatment of autism and its spectrum of disorders.
Shortly after the article was published, I was surprised to find an online reader comment scolding me for being a “self-serving lawyer” who was “just looking out for her own child” and suggesting we’d all be better off if my son Ryan were euthanized.
I’ve always been blessed with a thick skin, but this comment set me completely aback. Who could think that a child should be euthanized because he has autism and costs society more than a “normal” child?
I noted that the writer was wrong on his facts generally. Yes, I am a lawyer, and yes, my son’s autism led me to understand the issue and thus draft the bill, but my son Ryan actually was not even covered by the law that bore his name. Our family was insured under my husband’s employer’s policy, which was a self-funded plan not subject to state law. In other words, my husband’s insurance did not have to comply with “Ryan’s Law” and it could hardly be said I was just looking out for my own child.
I took some comfort in knowing that the writer was not smart enough to understand the law, or was too careless to check his facts, but still I was bothered that a citizen of my state – or anywhere – could believe that euthanasia was the answer. Sure, the chances were that my son, who was non-verbal and severely affected, would never achieve many of things society considers important. He would probably never go to college or even graduate from high school; he would perhaps never have a date or go to the prom; he would never drive a car; he would never be able to support himself – although it is important to note that at his age at the time – six – none of these conclusions were forgone. Children with autism make remarkable progress with intensive intervention, and many once “severely” children go on to achieve all of these things.
My concern was that some fellow citizen thought it his job, or society’s job, to determine when my son’s life was sufficiently empty or unimportant to be extinguished. What kind of person feels competent to draw that line? Should a child be euthanized because he can’t talk? What if he can’t walk? Should the litmus test be whether the child is likely to be able to support himself when he grows up? Should a child be euthanized because he can’t feed himself and it costs society resources to see that he gets proper care? Should a child be euthanized because he requires around-the-clock care? Is it a waste of society’s resources to let such a child live?
Many scholars have opined that the hallmark of a civilized society is how we take care of those who are unable to take care of themselves. Ryan cannot help that he has autism. My husband and I cannot help that Ryan has autism. We wish that he did not although we are blessed in many ways by the clarity that his disability has brought into our lives. We did not invite autism into our world, and wish that we did not have to rely on society to be benevolent, to do the right thing, and to think the right thing, but that’s the hand we’ve been dealt.
In the end, I felt sorry for the commenter. Within hours, my flare of anger and disgust melted away into sorrow and sympathy. I felt sorry that someone had the kind of mentality it took to pen those words.
Six years have elapsed since someone suggested that my child be euthanized. In those six years, Ryan has learned to swim, to ride a bike, to snow-ski, to cook chicken noodle soup in the microwave, and to tie his shoes. Every gain was painstaking, and yes, every gain was costly. He enjoys life and brings great joy into ours.
My prayers go out to the Begley family in Ontario at the insult they are surely still feeling. My prayers go out to Max, the 13-year-old child at the center of the controversy, who didn’t ask to be there, and to all individuals struggling with autism. And my prayers go out to both authors – the newspaper commenter 6 years ago and the anonymous letter-writer in Ontario last week -- that they may someday be enlightened enough to embrace the will to care for those less fortunate.
You can read Kara Begley's moving response to the letter she recieved on Love That Max: A Special Needs Blog