However, I do have some last words here.
I have changed a great deal over the years since starting this blog. When it comes to disability issues, my mind has exploded in understanding. It happened almost gradually at first, but then one day I just "got it". I saw things as never before and I guess, at this point, I am almost at a loss for words to express it. But the influence of all these people that I have met via blogging has been immeasurable and there were times when all of you "out there" were my life blood. Thank you.
Parenting and caring for a child with severe disabilities is an immensely complex affair. We walk a razor edge on so many decisions when it comes to the well being of our children: the surgeries, medications, therapies, schooling. I can say that too much of our life is spent fighting the greater powers that be to deal with us, with our concerns, with our children. We are awash in paperwork most of which is oriented toward making us "prove" our children need assistance of some sort, care of some sort, HELP of some sort. We are, too, generally considered as near criminals: good god I get the impression that most of us are soaking whatever agencies we have for those awesome big bucks they hand to us, piecemeal, for enteral feeding/trach supplies, seizure meds, diapers and help. Lordy...I think all of us have stocked our fridges with fine imported beers and are blinking dazedly at our big screen TV's...off the government teat, of course!
The parenting and care giving itself is a psychological morass of joy mixed with pain mixed with longing, regret, anger, frustration, wonder, love and resentment...and back again. Most of us have acquired the ability to hold what seems to be opposing emotions at the same time in our hearts, minds and souls. Most of us are tired. But there are some words of advice that I think I can give. There is no question that we make mistakes along this road of caring for another. The biggest one, I have come to realize, is to imagine that it is somehow morally mandated to become a martyr in the name of our severely disabled kid. As advice, I would say to any new parent that, all along this road, make sure you factor yourself into the equation: and of course I know that a world lacking in supports can make this near impossible. Still, find whatever ways you can to enrich your own life. Do not fall prey to hyper vigilance, to medicalizing your child, to minimizing your world or hers/his, in the name of sacrifice. Be careful of making your world small, with your child as the sun around which you orbit. Widen your circle wherever you can. Connect with as many as possible. Find ways to open your child's experiences under the care of others. Remember what a crap shoot life is, in the end. Remember that, should you, the care giving parent, suddenly have to drop out of the care giving circle, your child will suffer doubly if no real contingencies for alternate care have ever been created. Imagine too, for a moment, that maybe, just maybe, your child might like some breathing space, some connection to others. It takes a village to raise a child. And remember, all the enrichment you believe your child deserves, you deserve too.
And it goes without saying that in connection to all of this is the societal conceptualization of disability. If there is anything that has struck me most through these years it was the sudden realization that "disability" is far more a social construct than it is a medical one. Certainly, the significant impairments that our children live with make us walk with one foot in the medical world and one in the social one, but it is the overwhelmingly negative social constructs that turn those impairments into problems more significant than they should be. Disability is feared: Bill Peace has never been wrong about that one. And the fear is misdirected. Is it the disability that is so bad or the world that rejects it that is the real problem? Fear makes people defensive; accommodations are seen as special treatment and thus "not fair". Money spent on our children is seen as wasted, better spent on "productive" individuals. But the fact of the matter is that disability is a universal human phenomenon. It knows no age, racial, religious, gender, geographic or economic boundaries. It is a fact of being human. It happens. It exists. Deal.with.it.
Ah...and to deal with it! Prenatal testing and abortion, euthanasia, "assisted" suicide...these have been the growing coping mechanisms of the world so far. I have no further comment but to say that, in the end, I do believe that any and all societal and political constructs that affirm life are those most in keeping with that which makes us able to stand out from the animal kingdom to call ourselves "human". (And that, Peter Singer, is the fucking difference between us and your beloved animals.) I applaud all governments that support families to make a go of taking care of individuals with disabilities. I applaud the hard work of all activists, whether they be professional, or the sole parent facing down a phalanx of bureaucrats at an IEP meeting, who fight for the right of people with disabilities to live, not in mediocrity but in fullness, in dignity, in safety, in community. I applaud those who have made the effort to create loving, beautiful, safe and healthful living environments for individuals who cannot care for themselves, whether they be young or old. I applaud those who finally come to the understanding that disability rights are civil rights. I look to the day when governments and politicians understand that supporting their people, all their people, is what makes a nation strong, vibrant and influential on the world stage.
I can't move on without mentioning the Ashley "treatment". I will be refreshing that blog and adding some work to it. I have (rightly) become very tolerant of parents' myriad expressions of care for their disabled offspring and find it inappropriate to criticize what for most is a "making the best of a bad situation" scenario. But I remain unquestionably and unapologetically opposed to and critical of growth attenuation in any form it takes. It is an underground phenomenon now that I am at a loss to comprehend. The kindest thing I can say is that parents resorting to this are horribly misinformed and misguided. It is a shocking and unforgivable violation of the human rights of the severely disabled. It must be eradicated, and made illegal in every country. I have no kind words for any doctor who "recommends" this appalling course of action to parents struggling to wrap their heads around the challenges they face. I hold a particular disdain, however, for those parents and caregivers who have spoken publicly and in glowing terms about their choice to attenuate growth to the media, and to Ashley's parents themselves who were instrumental in bringing this monstrous "treatment" front and centre to be considered as a genuine "option" in caring for severely disabled individuals. I could say more...and likely will in the other blog...but the whole thing so rankles me, I do not want to end this blog on that awful note.
End it I will however, in the words of someone I deeply respect. Some time ago, I asked Bill Peace to address a very particular question I had regarding disability. Like or hate the guy, his response was marvellous to me. Here it is below in part and edited somewhat to eliminate some specific names mentioned in the original.
Take care all, and...'til we meet again!
...I would begin by stating that all persons are equal and none are less equal than others. No disability, however slight or severe, implies lesser moral, political or ethical status, worth or value. We as a society revere and pay homage to this ideal but are ill equipped to cope with a new class of people--that is men and women like Sophie who have profound cognitive and physical deficits that will require a lifetime of care. At issue is how do we apply what we value to Sophie--concepts such as freedom, independence and self determination. I would argue people like Sophie, that is this new class of people, encounter three barriers to equality:
1. Intellectual: We do not consider disability to be a civil rights issue. This requires a leap in logic few have made. It is far easier to see disability as simply a medical problem.
2. Experiential: In Sophie's case how do we assess her experience? How can we truly know what she is aware of and desires?
3. Defensiveness: We do not want to acknowledge bias against the most vulnerable people exists. If we did it would undermine our belief we live in a just and good society.
...(Some refuse) to acknowledge Sophie is in fact part of a larger class of people who have great challenges but are capable of leading a rich and full life with the appropriate social supports...Simply put, Sophie is not suffering any more or less than another person. She is living her life and that life includes challenges that are very different but do not in any way mean she is suffering.
.....Look past Sophie's physical and cognitive deficits and the misconception that people like her must be suffering. See Sophie for who she is and what she can do. She is a young adult that loves to eat hamburgers, veggies, and shrimp. She is affectionate and has a good sense of humor. She lights up when she sees her sister. She is liked by health care workers for the person that she is.
Like any other human being she has the right to lead a good life...