If you speak to most parents or siblings of a disabled child or adult, they will share how much they learned from them. Even friends or teachers or the checkout lady in the supermarket might speak of lessons, great lessons of hope, pure and unconditional love, determination, and laughter.
Is it hard? Yes. At times, so very hard. But very few would say that they would have changed them.
Their special child is or was a gift to them and to this world.
Would we wish they didn’t have to suffer, when that occurs? Absolutely. So we work and search for treatments and cures, but it is often in the search and the care for that child that we grow the most. And our child surely benefits from that.
Faith Jegede speaks of the wonderful lessons she learned from her two autistic brothers in a TED Talk last year.
So then I find it so confounding to understand why we, as a society, seek to avoid being the ones responsible for a disabled or differently-abled child?
In this age of advancing medical science, genomics, and technology, we come closer and closer to being able to identify many genetic defects long before birth. Let’s take an example. There are now very early tests to tell you whether your unborn child has Down Syndrome, children who are described as some of the most loving and pure children on earth (See Noah’s Dad blog for an example of a proud Down Syndrome parent).
It is only in the late twentieth century that these individuals came to be more present in society, having beforehand been housed mostly in institutions and colonies, away from society (See Down Syndrome on Wikipedia).
So the anecdotes and literature about their benefit to society is only calling on about the last fifty years.
Do people see that disability in our world offers blessings and gifts but refuse themselves to accept the responsibility that caring for and loving someone with a disability in their life might involve? Or do most just cover their eyes and close their ears as to these benefits and blessings and refuse to see them, saying “It’s just not for me. My life is just different. I couldn’t handle that.” or “I just really want that perfect baby”?
Is a typical child a perfect child? Or even, is a typical child any more perfect than a child with special challenges? Or in the alternative, might a child with Down Syndrome, given an ability to love unconditionally and generally be more joyous and enamored with life around them, be more perfect than your typical child? Or truly, are they just different, neither being more or less?
And so like for Down Syndrome, what if they then develop common genetic tests for Hunter Syndrome, MLD, Pompe disease, autism….
Will our world be left with none of these gifts?
Consider the eventual ramifications of effectively eliminating all those who are disabled or special or “a gift” to our society.
If you have a child, sibling or friend with a genetic disability, I encourage you to speak of the gift that they are to this world. Include them. Share them. Rejoice in the joy that they bring to an otherwise cynical, crowded, and rushed world.
And if you ever find yourself sitting with the knowledge that your unborn child may be different, and worried that now that means your life will be different, accept the gift. You won’t regret it.
For more consideration, read Didn’t You Get Tested? by Rachel Adams for first person thoughts of someone who chose life for their child with Down Syndrome (without religious or political reasons).
Also, read this 2005 article which foretold the increase in abortions of babies with Down Syndrome which, at the time hovered around 80%: The Problem with an Almost-Perfect Genetic World by Amy Harmon – an excerpt:
One study of 53,000 women’s choices, published in Obstetrics & Gynecology in 2002, found that the termination rate ranged from about 1 percent for conditions that were classified as having no impact on the quality of life, to 50 percent for those considered to have a serious impact.
Women were far more likely to choose abortions for disabilities that have a high probability of affecting cognitive functioning. For conditions that have little or no impact on the quality of life but might require medical or surgical therapy, the abortion rate was 16 percent, but doubled for those likely to cause mental dysfunction.
As for Down syndrome, doctors estimate that about 80 percent of women who get positive test results choose abortion.
Photo courtesy of Anjan Chatterjee (anjan58) on flickr