I am particularly fond of robins. They seem like a common and uninteresting bird but I love them nonetheless. As a child I remember them being a true first sign of Spring and, in summer, they populated our cherry trees, always defiant, stealing what fruit they could. It was a nest of robins, too, that was among Sophie's last memories, she, grief stricken at the baby birds' flight from their little world below our kitchen window. She stroked out soon after. Meanwhile, that young lady of the house has been an early riser, shall we say. The nights are short around here. Who knows why the hour between 3 and 4 AM holds appeal for her. Sometimes with seizure, sometimes without. Work carries on, a few extra hours here and there, as do the legal matters which have now shifted into an entirely different direction, forced by new circumstances. I am also having to work on completing an academic paper, started long ago, which has been a cogent reminder as to why I did not, those many, many years ago, pursue a PhD. In short, I am tired. And so I was drawn to the window at dusk last night, by the vibrant and exuberant song of a robin, the first time I have heard one after this long and god-forsaken winter. It was so loud, so forceful, I didn't know if the poor thing meant it as a harbinger of Spring or as an attempt to force it into being. At dawn, I heard it again, likely the same bird, just after my daughter's seizure. The song not quite so powerful, not as long, maybe the little bird's energy dampened by the freezing temperature and the snow that accompanied it. I was reminded of the thin line between enthusiasm and desperation.
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.
Jennifer Johannesen has launched her video project. A few weeks ago she featured anthropologist and disability rights expert/advocate Dr. Bill Peace. This week, I am being featured on her blog site, but she has now made the entire project site available. It is a work in progress with high hopes. Jennifer is just the right person to pull this off. Expect more and insightful material as the weeks and months go by. I hope someone will interview Jennifer herself! (hint, hint...) Jennifer's blog: HERE
"Nothing about us, without us" has become the rallying cry of the community of people with disabilities, attempting to bring about change and forward motion in their ongoing struggle for equal rights. It is, without question, bang on. In her excellent latest post, Jennifer Johannesen questions her position as a disability advocate without disabilities: it’s revealed to me a more uncomfortable truth about myself: I’ve come face-to-face with my own complicity in being the stand-in that makes disability more palatable to the non-disabled. In this vein, Jennifer makes a number of insightful points. I would hope that this would not dissuade her from carrying on. I continue to believe that the perspective of the caregiving parent of those who are more or less profoundly disabled has been ignored for the most part by disability advocates and policy makers. "Nothing about us, without us" applies to us caregivers too. Any law, public policy or support system that is set in place should be--must be--done in consultation with those on the receiving end of such supports. All too often, government bureaucrats heavily influenced by the medical model of disability are setting the agendas on how, what sorts of, when, and where supports are to be provided for caregivers. On the flipside of that, I will never forget a round table discussion about certain disability issues that occurred some years ago on TVO with Steve Pakin where the advocates, people with disabilities for the most part, were clearly completely oblivious to issues relating to severe disability and the caregiver role. Nothing they talked about related to me and my situation. It came as a profound disappointment to me at that time.
Jennifer also suggests that her polite, Canadian way of "packaging" disability is somehow suspect, in contrast to to the changes brought about by the stronger civil disobedience style advocacy that characterized the U.S. disability movement in the '70's. There is no question that those looking to enhance their knowledge of disability must more actively access those who are experiencing it directly...(and I bet organizers would tell you that few or none exist, sadly.) There is still power in the possibly less aggressive presentation and perspective of the articulate caregiver, however, particularly in this post 9/11 age where civil agitation is sometimes perceived as near-treasonous. Perhaps it is time to strengthen our position with something more "slick", but we still need the force of numbers and a unified front to make it all happen. To be part of such a movement, we caregivers need to become more politically astute, as Jennifer is discovering. I hope to address that issue a bit more in a follow up post on caregivers.
Especially because it is hard for many to recognize
and acknowledge people whose lives are significantly different, the unqualified
humanity of people with serious cognitive disabilities needs reiteration.
...the cultural divide between people with a disability such as myself and many others and parents of children and adults with profound disabilities. Our life experience with disability is radically different. Our respective approach to life with a disability is radically different as well..Sadly I have come to the conclusion a coalition between people with a disability and parents caring for a loved one with a disability can never be formed. Bill Peace I am uncomfortable because now I’m aware of the necessity for activism and frankly, it sounds like unpleasant work. Jennifer Johannesen
My understanding of disability has completely changed since I began writing this blog. To some readers, I may have crossed a line even, perhaps aligning myself too closely with disability self-advocates. I am, however, carefully pondering the different expressions of advocacy within the disability community. And where Jennifer Johannesen--someone who understands the realities of caring for a child with severe disabilities--contemplates the need for (and challenges associated with) a movement to advocate beyond one's personal circle, Bill Peace surmises that it is likely impossible for the two disability worlds (caregivers and self-advocates) to meet.
Both these writers make important points. We need to change the world, but what our respective groups are fighting for seems too different to form a cohesive group. I disagree, however, that it cannot be done but it is fact that both "sides" need to move toward more common ground.
Disability self-advocates will first need to explore and embrace more fully the experiences of those living with severe, combined disabilities, whether vicariously as caregivers or as the disabled person her/himself. Bill is correct in saying that "disability pride" is a no fly in our world, as is a rejection of "cure" and strident criticism of medicine. Generally speaking, disability self-advocates always seem to ignore the concept of severity. Severe, combined disability can express in some appalling forms (look up Lesch-Nyhan syndrome). There are violent and/or self-injurious behaviours, bizarre and dangerous urges (consider pica and one case I came across describing anal picking), constant seizing, severe distonia, cyclical vomitting and chronic pain (this is the short list) and usually all bound up with intellectual disability.
First, it is hard to imagine that any human being experiencing these severe forms of disability is going to "enjoy" life, much less pride themselves in their disabled form. And here step in the medical people to try and relieve the worst aspects of this life with drugs or whatever treatments with more, or (more often) less success. Some forms of disability are so compromising as to require ridiculous levels of medication so that the individual involved is facing either a life of violent symptoms or one of perpetual semi-consciousness. Some individuals are quite simply medically fragile and spend a good part of their lives popping in and out of crises, requiring hospital rescue on a regular basis. Disability pride? Anti-cure stance? I think not. Disability self-advocates need to see, accept and address this reality in their rhetoric. The medical model of disability is disadvantageous on many levels, but the hard fact is that in the world of severe disability, it has a valid position and, if nothing else, is often the provider of descriptive vocabulary necessary for we caregivers to access and tailor much needed services. Bill Peace asserts correctly that,..no parent wants their child to have a disability. No parent wants to see their child struggle. No parent wants to see their child ostracized. No parent should ever be put in the position of having to demonstrate their child's life has value. Yet this is the experience. Certainly, many heartaches can fill the life of parents of any "typical" child, but there is nothing comparable to watching and hardening oneself (if that actually ever really happens) against the daily onslaught of physical and sometimes emotional trauma experienced by one's severely disabled child. It requires nerves of steel. Maintaining the stance over years is wearing in ways that defy description. Not all are equipped to hold out, or hold up. Even if a child is relatively stable, the effort required to provide 24/7 personal care can burn out the most vigorous after a decade or more.
Eva Kittay writes: As carers, our moral labor demands that we imagine the
world from the perspective of the one cared for; we respond to the cared for in
accordance with her own needs,
desires, interests; and we attend to ways that our own needs, desires, and
interests may color, obscure or deflect those of the individual cared for. This is already hard when one is dealing with
a still unformed person such as a young child, but is especially challenging
when the person being cared for cannot be explicit in communicating needs and
interests. (Forever Small) Once again, the psychological challenges inherent in caring for a severely disabled individual are outlined here. We caregivers are constantly questioning ourselves, doubting ourselves, wondering if what we are providing for our loved ones is right for them, if it pleases them, if it brings them comfort. As a result, we are often very sensitive to anything that might be interpreted (rightly or wrongly) as criticism from outsiders. It is often felt that disability self-advocates are quick to stand in the stead of the ones cared for, openly criticizing the choices parents make, unaware of the complex interrelationship between parents and their severely disabled children and equally unaware of the fact that most of our choices by necessity fall into the category of the lesser of evils. And so, if we are going to begin a productive dialogue between disability self-advocates and parents/caregivers of severely disabled individuals, trust will need to be developed: trust based on the belief that those disability activists who can speak for themselves and possibly even live independently (or nearly so) acknowledge the reality of severe disability and pay full respect to caregivers and the challenges both physiological and psychological that they face on a daily basis. It's not, however, a one way street. Parent caregivers of the severely disabled have some learning to do as well. There needs to be some movement on their part toward the centre where, hopefully, we will all meet to bring about change. I will address some of that in my next post.
In this moment I accept that I have been given care of a very fragile person. I accept that I may likely never know why this task has been passed to me. In this moment, I accept that I need not know more than the fact that what I do has value.
With that, I will care for this person to the best of my abilities. I will forgive myself for the days I could do better, but don't. I will forgive myself for the days I would do better, but cannnot.
I seek to have clarity of thought that I might make choices most in balance with the many intertwining lives, including my own. I seek to be supported in whatever ways financial and emotional that will maintain this balance. I seek to learn how to draw from a well of infinite patience and energy.
I open myself up to the possibility of joy, of fulfillment, and of grace. I accept that, in this moment, it is all I can do.