The highly visible marriage of Sarah and Todd Palin, who filed for divorce this week in Alaska, really mattered to many parents of children with developmental disabilities who, because of ableism and associated stereotypes, needed to see anecdotal evidence that a good marriage between two parents raising a child with disabilities was possible.
That's because doubts abound. One mother I know, raising a child with a developmental disability, was greeted by another at a support group with the comment, “Are you divorced yet? You will be.”
But even though it is easy to succumb to the well-entrenched myth that couples raising children with disabilities will eventually divorce, there is no reason to think that having a child with Down syndrome had anything to do with the demise of the Palins' marriage — or that it is at the core of most divorces between two parents raising any child with disabilities.
As an expert let me say this clearly: The idea that having a child with a disability has to doom a marriage is simply false.
The premise that marriage and having children with disabilities are incompatible primarily has roots in ableism — the idea that life is always better without any disability involved. Ableism is a form of social prejudice that, conscious or not, assumes that people with disabilities are inferior to others, have less to offer and are inherently a misfortune. Ableism is prominent in the thinking of professionals as well as the general public.
Dr. Brian Skotko — a board-certified medical geneticist focused on Down syndrome at Massachusetts General Hospital —has long asserted that the negative aspects of raising children with Down syndrome are often overstated and perpetuated by physicians and others professionals, based on outdated research studies and personal assumptions. His opinion is based on the findings of large-scale research studies he has conducted in conjunction with colleagues. They found that the vast majority of parents (beyond 85 percent) feel proud, loving and positive about their children with Down syndrome.
Many other current research studies have supported Dr. Skotko’s contention that sweeping automatic negative assumptions about life with a child who has Down syndrome are not based in fact.
For instance, Ubano and Hodapp‘s 2007 research found lower than average divorce rates for parents raising children with Down syndrome. Of course, an intact marriage is not always a happy marriage, yet their findings about marital stability are important to consider.
The results look similarly positive when looking at the larger population of parents of children with any developmental disabilities: A 2015 study by E.H. Namkung and colleagues found no overall increased risk of divorce amongst parents raising children with developmental disabilities — but did find that in families with only children without disabilities, a greater number of children was correlated with a higher risk of divorce. This was not a factor in families with children with disabilities, and they suggested that those families tended to be more accustomed to being adaptable and using their resources well.
Somewhat different conclusions were drawn by Hartley and colleagues in 2010, who found a small increase in divorce rates for couples raising children on the autism spectrum with a heightened risk of marital instability during adolescence. This is understandable — and still far from depicting a dire picture.
But the blame for a skewed view of life for families raising children with disabilities can’t all be laid at the feet of professionals. Ableism is pervasive amongst the general public and sneaks into our thinking. It can be seen in the widely-circulated myth that 80 percent of parents of children with autism spectrum disorders get divorced. I have heard this “statistic” repeated by parents and professionals ad nauseum despite the fact that no one has ever found the research it was supposedly based on; the more positive findings of actual well-conducted research studies, like one from the Kennedy Krieger Institute Center for Autism and Related Disorders in 2011 showing no increase in the divorce rate, have gotten far less attention.
None of this is meant to say that juggling marriage while parenting a child with developmental disabilities is easy. Yes, there is more stress due to increased financial demands, less discretionary time and frequent and exhausting conflicts with schools and insurance companies. It is also common for one partner to feel compelled to give up a job to meet the increased demands in the home. Parents of children with Down syndrome and other developmental disabilities may find that extended family and friends don’t understand their child or the necessary logistics of their daily lives.
None of this means that such parents’ marriages are exceedingly fragile or destined for failure. There are absolutely more pressures, but these coexist with joy as well as many ordinary moments.
The assumption that marriages of couples raising child with developmental disabilities are doomed has sadly been embraced by many parents — and by their friends and family, making difficult situations even harder. I still can’t forget the words of one parent who said to me, “Of course, we had to throw our marriage overboard when we learned of our son’s diagnosis.”
Negative assumptions like these can lead to self-fulfilling prophesies in which parents think fatalistically about their marriages, and concentrate all their emotional and personal efforts on their children instead of trying to achieve a balance. It is, of course, a profound experience to raise a child with a disability, and parents may feel guilty devoting any time to themselves, much less their marriages. Especially at first, it is hard to believe that a balance can be achieved without sacrificing a child’s well-being. But this is only part of the story.
I have also consistently seen many marriages thrive while raising even several children with a full range of serious disabilities. There are many everyday role models of successful marriages between parents of children with disabilities, which the actual statistics bear out. Amongst these are friends of mine, who happily celebrated their 25th wedding anniversary while raising three adult children with Fragile X syndrome, an autism spectrum disorder that resulted in their children being nonverbal and having many behavioral challenges.
I firmly believe that the marriages that are most likely to thrive are those in which couples decide to protect their marriages, even in small ways, from stressors, including those related to childhood disability. A mother of five children, including one with Down syndrome and one with autism, explained her family’s strategy for having husband-and-wife time: “My husband and I have a Friday night date night,” she told me. “Cooking is my passion, so I cook us a gourmet meal every Friday. Oftentimes, we each have a child on our lap, but we still sit together with lighted candles and a glass of wine.”
Marriage while parenting — whether your children have disabilities or not — is about being able to adapt to your lives evolving together. The Palins were only one set of role models for how to do this and, as they continue to parent Trig, they may still be so. After all, further research might or might not confirm a small elevated risk of divorce among parents of children with disabilities — and, without question, some such marriages do end, as many other marriage end.
It is, without a doubt, harder to find that balance between marriage and childrearing when our society makes it difficult to raise children with disabilities. My work with hundreds of such couples has left me with a deep appreciation for the struggle through which many couples go. But don’t let the myths that abound convince you that the struggle is insurmountable, either.