Sunday, March 2, 2014

Parenting the Severely Disabled Child: The beginning

But because the new parent, if not herself disabled or already the parent of a disabled child, is likely to bring her own ablest biases to the situation, and as the physician is professionally liable to see disability as a medical condition only, a fully adequate response will require information from those better situated to provide a perspective from a life lived with disability. Eva Kittay, Forever Small: The Strange Case of Ashley 

I had written in a previous post that I am exploring ways of bridging the gap between "capable crips"--more politely, disability self-advocates--and parent caregivers of severely disabled children, in terms of creating a united front in a movement fighting for civil rights. In that post, I wrote more along the lines of how those with disabilities who can advocate for themselves must come to a better understanding of severe disability and the unique relationship between parent-carer and child or adult child. But as I said before, this is not a one way street: parent caregivers need to grow in their understanding as well.

The medical world is the gateway into disability. Whether born into it, diseased into it or traumatically injured into it, one must pass through the medical mill. For parents experiencing the sudden and dramatic introduction into the world of medicine and hospitals, it is akin to baptism in a deep pool filled with freezing water, being repeatedly pushed under whilst a drill sergeant screams, Deal with it! Deal with it! Deal with it! in your face every time you come up for air.

In other words, it is first and foremost all about trauma: trauma for the child and trauma for the parents, both physical and psychological. This has a way of imprinting itself into the human brain. In that incredibly vulnerable state where suddenly, you lose complete understanding of your child's health and well-being, you have to release all control of their care to strangers whom you are immediately expected to trust and who are surrounded by a culture of power and obedience. In other words, our society holds doctors and medical professionals in high regard, has near "House" like expectations of their knowledge and nothing in the hospital environment tends to question those assumptions.

In some cases, those early days of disability, however acquired, can often be accompanied by the need to make constant life and death decisions. One is either staring at one's baby in an isolate, tubes snaking out of every part of them, or at one's child, semi-comatose or in pain, or both, similarly constrained, with professionals nattering on about medical "facts" and the need to "choose". Exhaustion. Desperation. Horror. Fear. Sadness. Nausea. This is how the life of the parent caregiver begins.

I'll not belabour the  point. Suffice it to say that the medical experience of disability imprints itself deeply into the parents' psyche and remains a potent influence in everything that comes after in the disabled child/parent relationship. If the medicos manage to "save" the child and s/he ends up going home, parents take with them a medical fix-it perspective, the medical vocabulary, the medical routines and the fact that this is a personal, isolated tragedy, the aftermath of which is solely the parents' responsibility.

And that is often the case, in fact. Regardless what supports exist in the community, the transition from hospital to home is jarring. Where there was once an army of seemingly knowledgeable professionals around to rely on for physical and medical assistance, suddenly, it's you and the severely disabled child. It is overwhelming...and a lonely road. After what has likely been a long hospital stay, one is displaced from one's original place and routines in society, and is now the sole responder to the 24/7 needs of a child with complex care needs. As a result, parents will tend to cling to the medical perspective and framework for a very long time because it is all they know and because, for all intents and purposes, it seemed to have worked. More significantly, the trauma has been imprinted deeply in their brains and remains the defining characteristic of the experience of disability.

Little wonder then, parents and disability self-advocates have trouble seeing eye to eye on issues of cure and in discussions of "models" of disability.

In general, parents have little time to recover from the original experience. Once home, the exhausting reality of caring for a fragile individual 24/7 begins and nothing is ever the same again. This now becomes a game of survival: emotional, physical, social, financial. 

More to come.


  1. Excellent start. I can't wait for more --

  2. Claire
    I applaud you for absolutely nailing what "the beginning" of caring for medically fragile child is like. I cared for my son, who was trached and vent dependent from 4 mos. of age until his death two months ago at the age of 15. Your words resonated with me so much. I will add, that survival takes on a whole new meaning after the child, who you have so intensely cared for, dies. As I try to explain to people, I didn't just lose my son, I lost my life.

    Thank you for writing this piece.

  3. Claire, have you read Far From the Tree by Andrew Solomon? I just started it a few days ago and I thought of you and the work you're doing here. There is a lot of research into disability activism as well as ten year's worth of parent interviews in the book. I think you'd like it.