Thursday, July 17, 2014

Moving on

I won't be writing at this blog any longer. It's just not working for me anymore. My life is changing and I am moving on. I think I may end up blogging elsewhere but with a new focus...maybe, maybe not.

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' 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.

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...

Tuesday, July 1, 2014

Canada Day walk in the woods

It's Canada Day! I have the day off work so I decided to go for a walk at a nearby conservation area tucked neatly in the middle of some very expensive and la-di-dah homes on the hill.

I love the woods. I plan on walking as many of the trails in city that I can this summer. It's easy and I have the time and best of all, it's free! Today I hit Warbler Woods which is about 2 km from my condo. I took a quick look at the online map and then just drove over to the trail head and entered.

Greeted with this...

Yeah...whatever. Onward.

It was a lovely walk. Very peaceful, nothing dramatic to tell. It's just that being able to be so lost in nature right in the middle of the city is a wonderful thing. I saw a toad the size of my fist and a slew of tiny ones, smaller than my thumbnail. There was a good size garter snake, lots of coyote! At one point, the woods were surprisingly dark and the trail ran right at the edge of a deeper ravine. There was the creaking sound of two tree branches rubbing together as the wind blew. It was eerie and I can't say that I wasn't creeped out a bit. I thought about the fact that there was a time when people lived in a forest covered Canada with no trails. I cannot imagine how they got around. I myself ended up getting turned around in there and landed on some street far from my parking spot. Anyway...after an hour and twenty of walking, I was ready to go home. Meanwhile, a few other shots. 

A perfect, tiny white moth on the mucky, dark trail.

And these surprising little flowers or plants, tinier than my thumbnail, perfect in every way growing all over the place in this one area: some on leaves, some on the trail, some on little bits of wood. They were not rooted in the traditional sense, nor did I see them anywhere else along the entire trail. It seemed as though they simply gathered what they needed of air and water from the very spot where they were...not from the soil, almost parasitic in nature. They were exquisite and a perfect mystery.

That's my thumb there. That's how tiny those flowers were.

Saturday, June 28, 2014

The sacred and the profane

First the profane. 

Someone in the building left two vintage (yes, vintage...that's the word they use for "old" now, and, considering that I was born in '61, vintage sounds really good to me at this point) copies of Better Homes and Gardens. One is from 1964, the other from '65. Below is an ad photographed with my phone that made me totally crack up. The inset piece is especially hilarious. (Apologies for not being able to get it turned around here in Blogger...)

Now for the sacred. Speaks for itself...

Sunday, June 1, 2014

My zombie walk in the arboretum

Sophie managed about three hours of sleep last night and I was pretty much a zombie for most of angry zombie, I guess. What do angry zombies do anyway? Are they pretty much always pissed off? Is that when they haul off and eat people? Not certain about zombie lore. Ken? 

Anyways...pretty much beset by the angry monster today for a hundred small and a few big reasons so I went for a walk in the park across the road from my condo. Understand that Springbank Park here is a huge piece of river front land that runs pretty much from this west end to the centre of town. In any case, I discovered the park has an arboretum, just about a half kilometre away from my home. I looked at the trees and remembered, and breathed a lot and mourned a bit and took these photos. I love trees more than anything in the world (oh, and mushrooms too for some reason...not the druggie kind). So does she, here (the trees, not the mushrooms). Enjoy.

Sunday, May 25, 2014

Sophie turns 20!

Sophie celebrated her 20th birthday yesterday! Holy cow!! I no longer have any teenagers in the house.

The gal truly is a young woman. She got dressed up in a red maxi skirt, striped red and white top, red nail polish, red stick-on earrings, red bracelet and even red lipstick! We strolled to the local chocolate lounge and enjoyed a chocolate fondue made with real chocolate and a nice Chardonnay. Sophie was surrounded with caregivers who have become friends. She was very, very happy. I am so proud of her!

Friday, May 16, 2014

My utopian dream attempt at reframing the severe disability discussion

At this point in my life I am finding it increasingly difficult to adequately express my ideas about life with a severely disabled child. Deeper things and understanding haunt my subconscious as phantasms I cannot quite grab hold of. I suspect that the solution to my problem is to read more along the lines of disability theory and the like in order to acquire a broader "vocabulary" of disability and thus, maybe, find the language necessary to better frame my thoughts.

With that apology, I come here today in an attempt to write about what seems like a tired old line, "people just don't get it", about severe disability. A blog which I read regularly (but am not allowed to comment on or link to here or even read actually), referred to this piece with the ever so taunting title "What should we do about severely impaired newborns?". It's an appalling piece of crap writing, but not surprising to me in any way. It's the typical medico view of things, nothing new. The blog from which it was referred was a strong attempt at a response to the article, of course in opposition, but it and the comments following still seemed somehow off the mark in my opinion.

I find that discussions surrounding the lives of those with severe disabilities rarely address the relationship between those individuals and their caregivers. So when people step up on their soapboxes to either claim full right to life of the severely disabled or to opine on the "poor quality of life" of these individuals (hence the need for merciful euthanasia), they are always way off because either way they don't address the significance of the caregiver in the equation.

Quality of life is largely situational. I can tell you truly that, even with all her challenges, my daughter's life is far, far better than that of a half starved, crack addict's daughter whose father regularly beats and rapes her. Yet, there is no challenge to that child's "right to life", now is there? The response there is to remove the child from the offending environment and in the longer view, to alter the social circumstances that created her life to begin with, not kill her off. The same can be said of the individual with severe disabilities. What is the situation? Who will be the caregivers? Do they want to step up? What supports exist for these people? The argument cannot entirely be predicated upon the individual her/himself. It's a group thing, and always will be. Proceed from there.

However, having said that, I am always intensely uncomfortable with the "ripple effect" and  "love" arguments. One commentator on the unmentionable blog was quick to point out how the short lives of a couple of severely disabled children had such profound positive effect on their caregivers and that the opportunity for unconditional love was just too great to pass up. I know for certain that my daughter has enriched my life and continues to do so. I consider myself lucky for the experience. However, is it a valid argument to say that we MUST keep certain individuals alive because they enrich the lives of others around them? Is that fair to the individuals living with the impairments? It's a weak, but well worn argument. Secondly, it is decidedly Pollyanna-ish to hold the view that the experience of caring for a child with severe disabilities is invariably a positive one or positively transformative. It is as much a stereotypical view of disability as is the view that disability is purely "bad" or a wholly negative experience.

Again, back to the caregiver. The challenges inherent in caring 24/7 for another human being with complex needs are numerous and often intense. Not all people are up for the job. Many struggle with exhaustion and depression. Some do not have the emotional reserve or whatever it is to do it. Caring for a child like this can and does also ruin lives, sometimes to the point of driving parents to kill their child and then themselves (or just their child) and love or seeming lack thereof has very little to do with it. Furthermore, caring for a disabled individual is not the only transformative life experience that one can have so, once again, is a life at all costs position tenable merely because it is potentially positively transformative?

In my view, at this point it seems to me that most discussions about how to deal with severe disability are poorly framed from the get-go. I certainly don't have any really good ideas to fill in the gap either. What I do see, though, is an overall lack of nuance. It's just not as simple as the utilitarians and their life-boat logic makes it seem, nor is it useful to attempt to frame the entire experience as a gateway to a grand spiritual awakening.

I think that any and all discussions about anything dealing with human life have to start with the fundamental understanding--or the wisdom, if you will--that life experiences are vast and varied and that we cannot presuppose a greater value of one experience over another. I would like to live in a world that exercises compassion in politics and policy making, rather than creating good guys and bad guys. I would like to see creative solutions drawn out of difficult circumstances, rather than a view that posits limited resources and the fear mongering that accompanies that way of thinking. I would like a philosophical framework that would strive to enhance the life experiences of individuals from the point where they stand at any given moment. Case in point, one very astute young nurse I know who advocates for street level workers and other women at risk put forward the radical notion that some of the women she knew functioned much better if they maintained a low-level drug habit. She argued that their life experience was improved in that way and that to penalize them by forcing them to be completely clean before they could receive this or that service was counterproductive.

In the case of severe disability, enhancing life experience needs to take into consideration the impaired individual and the caregivers-to-be. It can't be either/or sprinkled with a lot of guilt. First off, what is the nature of the impairment(s) and is it truly causing excruciating suffering (and not just upsetting the medical staff/family)? For the caregivers, ideally, the social circumstances would support them with respite and other services, and good quality, long term out of home care environments existed to provide a positive alternate choice. If these things are not available to family caregivers, then some soul searching needs to be done. I cannot stand in judgment of their choices, given their particular situation. These things need to be looked at case by case. It can never be a blanket statement "what do we do about severely disabled newborns"? It has to be "how do we enhance life experience and what does that mean in this case?".

Yeah...I'm a big fat dreamer. 

Tuesday, May 6, 2014

Dear Yo-Yo Ma

Dear Yo-Yo Ma,

This morning, your beautiful cello played Bach as my daughter fell into a seizure. 5:01,, music,, music...5:04....the orderly progression of notes a counterpoint to the violence of storming neurons in her brain...5:05, she goes limp. I wait, change her, turn her, lay beside her in the lounging chair by the bed. I stare out the window, the vibrations of your cello always drifting in the air. 

The night previous, I had listened to you and Bach. I love Bach you know. His music, cleanly executed complexity, brings order to chaos. Each layered musical sequence draws out and separates an individual emotion, concern, fear, secret joy from the morass that is otherwise human thought, and strings each bit along, like the graceful unravelling of a poorly woven piece of fabric. Rainbow threads drift past to be scrutinized, cast off, kept, rewoven constructively, with softness. I always won the Bach competitions when I was ever so young. We had an understanding, Bach and I: keep my mind in order and at peace and I will betray only a touch your deeply felt emotions in my playing. I won`t give away all your secrets, Mr. Bach.

I am tired, Mr. Ma.

And so, ever so early this morning, I allowed Bach to once again deconstruct, reconstruct this bizarre life through you and your marvelous cello. My daughter dozed in postictal haze, I stared out the window at the lightening, colour stained sky and watched the sun rise, again.