I am the mother of a profoundly disabled little girl. She is five years old, does not walk nor talk, and has epilepsy that cannot be controlled with medication. Like many parents of children with disabilities, my husband and I had mixed reactions to the news that Sarah Palin’s son, Trig, had Down Syndrome. It is a good thing to have prominent people acknowledge and embrace disability, and on that score, it was satisfying to see Trig on national television.
That sense of recognition, however, is mixed with serious doubts about Palin and very real concerns about the deference being accorded her as a “Special Needs” parent. First, my husband and I are long-time and committed supporters of Barack Obama. Sarah Palin’s nomination as McCain’s Vice Presidential candidate did nothing but deepen our fears about McCain’s judgment–she is unqualified, belligerently ignorant of the policy and political landscape of the country, and, from recent reporting in the Washington Post and New York Times, an astute practicioner of the secretive, bullying, and punitive political methods perfected by the Bush-Cheney administration in the last eight years.
But equally troubling, to our mind, was the avalanche of commentary about Trig, and the plaudits Palin received from virtually everywhere for having borne her baby despite knowing ahead of time that he would have Down Syndrome. (Though she didn’t, according to her own words, tell anyone in her family about his disability prior to the birth, which strikes us as strange.) The implication offered by many—particularly among those for whom opposition to abortion is inseparable from religious confession—is that in giving birth to Trig, Palin had done God’s work.
From our point of view, however, giving birth to a special needs child is no more God’s work than having a “normal” child. Sarah Palin made a decision to go to term with her pregnancy. Frankly had she chosen the alternative, she would be a rank hypocrite given her absolutist pro-life beliefs. But there is nothing about the birth of Trig that is more noble than the births of the other four Palin children.
Once a child takes first breath, the responsibilities of a parent to nurture and protect take over with considerable urgency. Some undertake these responsibilities well; others do not. Sarah Palin may be a wonderful parent and have a loving family. But she has not earned the right to be regaled as exceptional simply for loving and caring for her youngest child. With the exception of those who adopt children with disabilities, parents of special needs children do not choose this “vocation.” Nor does having such a child bestow special grace upon mother and father.
We notice another feature of this discussion, as well, one that parallels our experience day-to-day. It is interesting how well-meaning, able bodied-and-brained people struggle for comfortable ground when confronted with the implications of parenting kids with disabilities. For many observers, the birth of a child with special needs transforms parenting into something heroic in which parents embody selfless sacrifice. We suspect this is because physical and mental disability in a child is often so unimaginable, so frightening, and so messy to those on the outside that there is a distancing that takes place. Safely self-identified as “not able to do that,” one can stand back and admire the super-hero parent who has got it all under control.
Perhaps understandably, praise and admiration may substitue for nitty-gritty engagement and investment in what it really takes to raise a child with disabilities–and for getting inside the truly conflicted feelings many parents have about doing it. There is much that we do that is selfless (as with other parents), but there is also much that we struggle with, cry over, and regret. Ultimately, parenting a special needs child is a profoundly humbling experience. It forces a renunciation of the vanity of viewing your children as exemplars of your own special virtues. Perhaps this is the thing that sticks in our craws so much about Sarah Palin, who appears to have transformed one form of vanity about one’s children into another.
So, it’s true–we aren’t like everybody else. But the difference is not a matter of heroism and sacrifice. And it’s not just a matter of giving birth. It’s the fact that raising a child with special needs is a life-altering experience in which one is initiated—sometimes kicking and screaming—into a largely unseen, or at least unacknowledged, world. Exposure to that world is fantastically transformative in terms of how one interacts with family, friends, neighbors and–especially–social and governmental institutions.
Sarah Palin is currently at the beginning of this journey. She will, we suspect, soon discover that Hockey Moms have got nothing on Special Needs Moms who manage the schedules and transportation of their children: physical therapy, speech therapy, occupational therapy, primary care doctors visits, specialist doctor visits, medical tests, and on and on. As Trig grows, Sarah and Todd Palin may have to acquire arcane and specialized medical knowledge to understand and care for their son’s complex needs. Like other moms and dads, they will become experts in the healthcare industry as they advocate for comprehensive coverage, tests, medicines, therapies, and equipment that their child needs. And then will come school, and fighting for their child’s educational needs to be met by institutions that are underfunded and often ill-equipped to do the job.
As I diaper my daughter and imagine how I will do this when she is 10, 20, 30 years old; as I weigh and measure every bite she will eat to conform to the ketogenic diet that lessens her seizures; as I hold her when she seizes and curse the brain abnormalities that put her through this day after day, I am reminded of how precarious her life and ours are. I am reminded of how much the world of competition and “boot straps” rejects and fears her, and how much we depend on others to help us to care for her well and with dignity.
Parenting our daughter has thus taught us a different lesson than the one that John McCain and his party lifts up. They see the “heroic” in Palin’s “choice” to bring her son into the world (an oddity, surely, for the anti-choice). Our experience, by contrast, has highlighted something far different than the individualism embodied by the “hero” making “choices.” Through our daughter, we have discovered the true meaning of “commonweal”—the common well-being. All that we do we do for her we do with help—and much of that help has been mandated by the often-derided “big government.” The Americans with Disabilities Act, the Individuals with Disabilities Education Act (IDEA) that mandates fair and appropriate educations for people with disabilities, Illinois’s 0-3 Early Intervention programs, the City of Chicago’s grant program for housing modifications for the disabled, the non-profit foundations and organizations that provide us with resources and hope—these programs and others like them have been put in place through the efforts of lawmakers and citizens who believe that we are all benefitted when the least of us is protected.
Barack Obama gets our vote, in part, because he has laid out specific agenda items addressing just these programs and policies (all available under “Issues” at www.BarackObama.com). Perhaps John McCain’s and Sarah Palin’s expressed sympathy with and interest in the challenges of disabled children would, if they were elected, translate into policy positions that promised real improvement. But we don’t want to take that bet. These two people indisputably subscribe to foreign and economic policies that fly in the face of such an agenda. How will we fully fund the the Individuals with Disabilities Education Act (IDEA)–now limping along at less than 50 percent of its promised federal support–while prosecuting the war in Iraq at the tune of $12 billion every month? How will we expand Early Intervention therapy programs for children aged 0-5 and at the same time offer more tax cuts to millionaires and gigantic corporations? How do parents of children with chronic and disabling illnesses care for their children in a healthcare system that is broken and which the Republican party shows no inclination or ability to fix?
The fact of the matter is, advocacy turns to exploitation when the platform on which you stand is full of contradictions. Put your money where your mouths are, McCain-Palin. We don’t need to be reminded of the “great job” we’re doing as parents of kids with special needs. We don’t need “heroes” to model sanctimonious double-talk. We need our country and its leaders to demonstrate a real commitment, not lip service, to the needs of the weakest and most vulnerable in our midst.