My child was born with severe, chronic, multiple disabilities. Our path was not so much about fixing his problems as it was about ‘maximizing his potential’ and ‘harnessing his natural abilities’. A modern and enlightened approach certainly, especially when compared to the mindset of previous decades. But let’s be real: even with this generous perspective, Owen was still charted against typical, age-appropriate development and until the golden day when he would catch up with his peers (lol!) we would be doomed encouraged to continue his ongoing intensive treatments and therapies. While no longer overtly stated and now wrapped in a rather cheerful bow, the ‘not good enough’ was implicit.
Despite the strides our society has made regarding children with disabilities, the treatment or fixing of a child’s severe disability remains such a priority it is often more important than any of the following ideals we cherish for regular families:
- protecting early childhood – which typically means shielding the young child (and the mother!) from stress, performance expectations, grading and evaluations, scheduled work, focus on achievement
- maintaining family equilibrium by giving each sibling equal attention, as well as leaving ample room for the parents to have an intimate relationship
- allowing the parents–particularly the mother–to relish in the joys of caring for a young child
- living within a family’s means and maintaining a balanced budget (going into crushing debt to pursue therapies is not uncommon)
Families with a child with disabilities willingly sacrifice these things and our institutions expect us to as well. Of course no one comes out and says we must intentionally trade this for that, but when it inevitably happens we get sympathetic looks and reassurance that we’re doing the right thing.
I’m sure we could come up with a million and one reasons for why society works so hard to overcome and eradicate disability in childhood, but I can’t think of any that don’t fall into one of these four categories*:
- Parents have a very hard time recalibrating their hopes and dreams for their children, as well as their own definition of what it means to be a good parent.
- New parents don’t know better, nor are they taught or given options. They have likely never experienced disability before and are often taking on blind faith what is provided to them by healthcare. (Ever notice that the more experienced a parent is, the less focused she or he is on ‘overcoming’ disability and the more focused s(he) is on relationship and quality? Can healthcare not help young parents discover this wisdom sooner, rather than let them flounder around until everyone gets older?)
- Parents are fearful. It’s an increasingly hostile world for adults with disabilities, especially those with severe disabilities. Social isolation, institutionalization, poverty – the outlook is generally bleak. In fact, some find this so bleak that they see mercy killing and growth attenuation therapy as justifiable options, carried out without consent of the person in question and for which otherwise reasonable people (and in the case of growth attenuation, medical ethics boards) can find empathy.
- Because we can. Medical technology keeps pace with our fears and sometimes takes the lead, telling us what to fix by virtue of its mere existence.
* I intentionally leave out the motivation that starts with “Because every parent wants what’s best for their child” – this is covered by the first point. And probably the second point. Oh and maybe the third and fourth. Also, I appreciate that the desire to relieve actual physical pain is a motivation as well, but I prefer to stay away from the subjective and slippery ‘suffering’ attribution. Disability, even severe, does not necessarily mean suffering.
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I don’t for one second advocate for removing therapies for young children on principle–but I do wonder why there isn’t more inquiry on all sides, pondering the hard questions earlier on. Questions like, will it be worth it? What is it we’re really trying to make the child do, and why? What would my child likely want? Ought I trade my child’s childhood and my family’s remaining normalcy for what will likely be minimal improvements over a very long stretch of time?
But of course, hypothetical questions can only get hypothetical answers.
If I ruled the world? More families and parents would tell their stories. And those stories would be openly accessible to all who can learn from them–doctors, clinicians, researchers, families and the patients themselves. We need to properly close the feedback loop instead of letting only medicine and healthcare provide partial answers.
I was reminded of it because last week I attended a Grand Rounds by Jennifer Johannesen, author of No Ordinary Boy, in which she spoke about how challenging it is for parents of children with disabilities to make good medical decisions. That statistics, the assurances of specialists — which in our case often came in the form of “If this was my child, I would pursue it” — can’t take the place of careful inner enquiry on the part of parents to understand ‘why’ they’re considering the intervention. Who is the surgery being done for? What might the child choose? If gains will just be incremental, does it justify the pain of the procedure and rehab? We’re often not prodded to look at the bigger picture in terms of how this surgery fits with everything else going on in our child’s and family’s life. And how may we feel if the outcome isn’t what we hoped?
Within months after Owen was born, I was told he was deaf. Inside, I shrugged. “Oh well,” I thought. He almost hadn’t been born. He almost hadn’t lived. He almost didn’t come home from the hospital at all. Deafness didn’t seem like a real problem to me. People are born deaf all the time, aren’t they? And they manage, right? It was a guess, but it seemed logical.
What a traveling sideshow we became. At the zoo – pushing Angus’ stroller in front and pulling Owen’s wagon behind, binder in my backpack and key photo cards loose in my pocket. “Look Owen! Fish!” Hand undulating in the sign of a fish, pointing to the weirdly pale puffy creature in the eye-level aquarium, then blocking Owen’s view with a photo of a fish that looked nothing at all like the thing in the tank. Then, pause to dig out the photo of a butterfly, the exhibit of which was just around the corner. It all took less than a minute, in a waking day comprised of 720 minutes. So much to do.
Now, years later, Owen’s deafness ceased to be an actual problem. It went from being the most of my worries to the least. It went from being the severest of disabilities to just one of many characteristics that made him uniquely who he was. The about-face was so complete that there were many times I forgot he was deaf. Or, I forgot that his deafness was a particular thing any more than was his curly hair or his funny duck-like quack.
