Over the last couple of months, there has been extensive coverage of the Zika virus as a potential cause of microcephaly, a medical condition resulting in a smaller than average head size. As a result, babies born with microcephaly may develop physical, sensory, or learning impairments. The media has been full of stories with a tone of a fear, if not hysteria.
Yet parents of children with microcephaly and people with the condition themselves have painted a very different picture of their lives. One such person was a young Brazilian woman with microcephaly, who is today a successful journalist who describes herself as a “fulfilled, happy woman.”
Reading such stories emphasises that while disability is often framed as tragedy, people with disabilities and their families can feel very differently.
This Monday (21 March) is World Down Syndrome Day, a global awareness day that has been observed by the United Nations since 2012. It is a day for people across the world to unite to advocate for the human rights, inclusion and well-being of people with Down Syndrome, and to celebrate the value people with Down Syndrome bring to their communities.
Like the young Brazilian woman with microcephaly, people with Down Syndrome are fully capable of leading happy and fulfilled lives. Indeed, research shows the vast majority of families love and are proud to have a family member with Down Syndrome.
Yet, again, a culture of fear can persist for example, as to a prenatal diagnosis that a child may have Down Syndrome. There is a clear link overseas between prenatal screening rates and increased terminations on the basis of disability. I suggest that one reason for this is partly because our society is not as welcoming and enabling of disabled people as it should be largely due to uninformed perceptions based on fear. An equivalent example could be in some societies overseas where girl babies are generally valued less than boys.
Disability is rarely a death sentence for the person or their families. We encourage all people with limited experience of what Down Syndrome or disability actually means for a person’s quality of life to seek out information, and where possible, talk to families of people with Down Syndrome.
All families, whether disability is a component or not have stresses and anxieties to manage. It is part of normal family life. With love and support, a child with a disability can enjoy and offer back to their family the same happiness that all Kiwi families treasure.
As Alex Snedden, a young Kiwi with Down Syndrome, once famously said, “Don’t be afraid.”