Moonstruck

Filed Under (Adam, Family, Joy) by Estee on 31-12-2009

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I am moonstruck in Miami. I kid you not that while this is an Internet image I’ve just found, it just about looks what I saw this evening rising at sunset. My dad, the photographer, got some real shots of it which I may post tomorrow.

It’s a quiet New Year’s for Adam and I, my parents having spent the last week with us here. Yet it’s been really lovely. A year of significant change has settled gently now in the warm arms of family. _DX02606 After we’ve run along the beach,had our haircuts with our favorite girl, swum endless hours in the pool and broken bread together, we have snuggled in our beds… contented.

Adam needed to end his year just like this after being so wrung before he left for Florida. He spent time here first with his dad, and now, of course with his mom. And while we have become a family of a different sort this past year, Adam, I believe, has still found it full of love.

It is well before midnight and Adam went to sleep about an hour ago simply exhausted from sun and sand. We will not watch the crystal ball drop but we have watched the rare Blue Moon rise in the sky tonight — the moon that will only come out in another 19 years. I can barely imagine what life will be like 19 years from now.

A year ago we were in a tougher place as I struggled with separation among Mayan temples during a trip to Mexico. But as I listen to the ocean one last evening before our flight home tomorrow with Adam sleeping beside me as I write this, and take one last peek at that magnificent moon, I can’t help but notice how much difference a year can make. The year 2010 is going to be a good year — I can feel it.

Thanks to everyone who made their comments, who sent me emails and those who stay in touch in all the other ways we can stay in touch these days. I’ve appreciated it. I wish everyone a happy and healthy new year!

Just because he’s laughing….

Filed Under (Adam, Discrimination, Family) by Estee on 16-12-2009

All of us have encountered ongoing misunderstandings about our autistic children. Adam, going through something at the moment, could also very well be going through stress. Perhaps delayed, perhaps not, what really worries me is the assumption that just because he appears happy, that he must be happy and as such, because of his autism he is neither affected by nor registers the new people in his life and the separation itself. To borrow a recent post by A Life Less Ordinary, Emily writes of this regarding the autistic child and school and it resonated with me in these days of Adam’s apparent stress levels:

–An autistic child can often be”low arousal” in certain ways. That means that even a brutal and ill-intended pummeling may not elicit a visible or detectable response. Never assume that such behavior is being taken in good part just because the autistic child isn’t crying or complaining about it.


–An autistic child may not tell an adult about physical and emotional bullying unless they are very close to and comfortable with that adult.


–An autistic child may not respond to repeated insults until some unclear breaking point is reached. The autistic child may then respond. Just because the autistic child made no previous mention of the bullying doesn’t somehow make the bullying OK or negate the fact that the child’s response was provoked.


–An autistic child may not express the emotion you expect. An autistic child in great pain–emotional or physical–may smile or even laugh right through it. I can assure you that the laughter does not mean the autistic child is actually having a good time.


–An autistic child does not express himself or herself the way a neurotypical child or adult might. Try not to judge an autistic child’s facial or emotional expressions through a neurotypical filter or from a neurotypical viewpoint. You’ll never have the correct understanding of the autistic child if you do.


–An autistic child may look like s/he is having a great time. If that child is, however, in the midst of a scrum of running, pushing, verbally sparring children, that child likely has no idea what is really going on. And that child is also likely a target of under-the-radar bullying that you’ll never hear about.


–An autistic child in an unstructured, chaotic social situation is a child who is likely completely at sea and who is likely the target of bullying, both subtle and overt, both physical and emotional. Don’t ever lapse into thinking otherwise.


–An autistic child in the midst of more than a couple of neurotypical peers in an unstructured situation is never fully armed, never as completely socially able, never truly interacting on a level playing field as the neurotypical peers. Never.

To assume otherwise is not to understand the autistic child.

Like everyone, Adam responds well to a good vacation and in addition to some upcoming necessary tests, I’m glad he will have one soon and hope for a resolution so that I really know what I’m dealing with. He appears to be doing well in school, and accompanied by an aide, I am assured he is not being bullied. Yet I also wonder how he views himself now that he is maturing, next to his “typical” peers and indeed, we are in a completely new phase of our lives.

So a vacation is needed and mom needs to think. Unlike previous years, he will first go with his dad and then be rejoined with his mom in Florida.  I am definitely concerned as his mom with all the transitions he has had to endure (as an autistic person they are far more stressful than for an average child) and the assumption that this separation has not effected him deeply, even though as parents, we are doing the best we can.

The Times, The Blogs Are Changing…

Filed Under (Activism, Adam, Family) by Estee on 02-08-2009

What’s a life anyway? A series of decisions, forks in the road, relationships, children.  I consider that sometimes, people are afraid to make decisions and many let others make decisions for them. I do not want to live that life.  Life is that proverbial struggle, that uphill climb, like my recent bicycle ride. I wouldn’t give up then, and I don’t give up now.

Kristina Chew’s recent post, Ave Atque Vale,  reflected what I’ve been writing for nine months now but less forthrightly. She too recognizes that as Charlie grows, the need to blog and write has shifted focus to disability rights instead of vaccines, therapies and the like. I think it’s really interesting to see how many of our lives are parallel, and this is viewable by following bloggers who began writing in and around the same time (most of them are on The Autism Hub).

I look back at my early writing even two years before I began blogging — some two hundred pages of our experiences with different therapies and therapists, supervisors, media and the emotional wrangling that went with it all. I remember being somewhat rebellious to what the experts had to say and was stubborn enough to want to follow our own path. I remember the parents with older autistic kids — there were two camps really — those who said that I was too early on in the autism process mill that “Adam is a cute little pischer now, but wait until he grows up,” to parents of even older autistic adults who quietly observed me and acknowledged the stage I as at, knowing full well that autism is something that will be forever a part of our children and our lives. I think I saw in there eyes some strain as well as some peace — the strain of being burned by autism politics, the strain of raising a child in a world that did everything to fit them like square pegs into a round hole. But also behind the strain was an aura of peace, of time leveling it all, of what we call acceptance for things that just are and will be. This is a part of acceptance that interests me — how people make different decisions and how time weathers us all.

I do not know what lies ahead now for Adam and I. I was a woman who was married and felt some refuge. Now I stand with Adam on my own, no less resolute but having to step back and take some quiet time for his sake and mine.  I made the decision to put Adam at the top of my list of priorities. For better or for worse, here I am.  I am proud of our lives. I am proud of how I’ve lived mine so far. I have no regrets. I cannot change the kind of person I am. I cannot change the decisions I made. We can’t make our husbands, wives or partners want to join us on the ride. Some of us move out into the world and try to make a change. I imagine this isn’t easy on all partnerships. Maybe I’d rather be that woman who makes decisions instead of letting life make them for her. Maybe women like me do not always fit into the world as it stands. Maybe the sense of “not belonging” is deep within me and has given me that will to fight for Adam’s inclusion in this world.

You see, no matter what side of the fence we are on, no matter what happens, this life we all live is so interesting. It is not interesting if we sit on the side-lines and take no stand at all, have no convictions or beliefs. I am baffled when humans get pounded on the head and then cower away (by the way, I took a recent post down on Autism and Laughter study not to cower but because what I wrote was not thorough nor thoughtful and will be the first in line to admit it). I am perplexed when people criticize us and we decide we are too tired to go on. Sure, life beats us down and we need to gather ourselves and that takes time.IMG00831-20090731-1608

But this autism mom, woman, writer, little girl, friend, dreamer, someone’s ex, daughter, cousin — and all the other things that make up who I am — will never, ever, ever give up. I don’t think it’s in my DNA and maybe, I wonder, this is why I have been blessed with Adam. Adam, who has taught me so many things and keeps making me a better, more thoughtful person. Adam will know that life not defined by taking the safe and easy road, but by having the courage to make decisions. My life is changing and therefore, so is Adam’s. His life will change and therefore, so will mine.  I am in the fog of the dust not yet settled, but am keeping a close eye on the pulse. For some of you, my blog may now be a bit boring because of my life change, for others, it may offer some place where we can share some common ground. For this is why we write. This is why we share our stories. When major things happen in our lives, even if we are beaten down, it is how we rise to the occasion  that matters.

In the words of Bob Dylan:

The Times They Are A-Changin’

Come gather ’round people
Wherever you roam
And admit that the waters
Around you have grown
And accept it that soon
You’ll be drenched to the bone.
If your time to you
Is worth savin’
Then you better start swimmin’
Or you’ll sink like a stone
For the times they are a-changin’.

Come writers and critics
Who prophesize with your pen
And keep your eyes wide
The chance won’t come again
And don’t speak too soon
For the wheel’s still in spin
And there’s no tellin’ who
That it’s namin’.
For the loser now
Will be later to win
For the times they are a-changin’.

Come senators, congressmen
Please heed the call
Don’t stand in the doorway
Don’t block up the hall
For he that gets hurt
Will be he who has stalled
There’s a battle outside
And it is ragin’.
It’ll soon shake your windows
And rattle your walls
For the times they are a-changin’.

Come mothers and fathers
Throughout the land
And don’t criticize
What you can’t understand
Your sons and your daughters
Are beyond your command
Your old road is
Rapidly agin’.
Please get out of the new one
If you can’t lend your hand
For the times they are a-changin’.

The line it is drawn
The curse it is cast
The slow one now
Will later be fast
As the present now
Will later be past
The order is
Rapidly fadin’.
And the first one now
Will later be last
For the times they are a-changin’.

The Benefits and Consequences of Telling True Stories

Filed Under (Activism, Adam, Art, Autism and The Media, Critical Disability Studies, Discrimination, Ethics, Family, Writing) by Estee on 06-07-2009

This post is part of a series of posts I am writing on Writing About Disabled Children.

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We are all storytellers. The only difference is that some of us write things down. The other difference is that some writers are also artists — able to craft a work in order that bigger ideas are suggested, open-ended, and not written as if to strike a blow to the head. In other words, it’s much more effective to create the sublime message in a work of art in order to convey an impactful message, oftentimes, than simply stating the message itself. Art is the bridge to understanding humanity.

In my last post Why Do We, As Parents, Write? (see several posts down), I mentioned that I was trying to respond to a series of self-inflicted questions. Several of the questions all have generally to do with the consequences and benefits of writing about children with the additional peril of writing about disabled children — usually children who cannot speak for themselves.

As I’ve noted, I have numerous reasons for raising these questions at this point in my four-year blogging history. Firstly, I am going through a divorce. I hesitate because the story I would tell would still be influenced by my being too close to be self-deprecating, no matter what the circumstance. I tend to think that all great memoir writing about difficult life circumstances has this element in it: the ability to see oneself and one’s on imperfections even if the action towards you was unjustified, as well as the ability to be compassionate to characters who have done unjustifiable acts. In what I believe to be interesting narrative, everyone has their reasons which leaves out judgment. To understand others and their motivations is the foundation of all good writing and formulation of interesting characters. Of course, I am, as they say, still “too close” to write about my personal life, if ever I do at all. I will likely have more interesting things to write about.  In order to tell really good stories of truth or fiction, we need to understand our perspectives and assumptions at a particular point in time. Without dissecting them, our writing and characters remain flat.

One concern I have is for my son to read what I write about him. I want him to feel that I was real and wrote about him with truth, compassion and dignity. Compassion is the key to telling true stories, I believe. I want him to think that I was a good artist who didn’t have to expose every detail, but got the bigger point across. So, I have made a commitment to him and to myself to write when I feel I can truly step away from things that are still emotionally charged. It’s not that I want to be emotionally distant – indeed my emotions are a full part of my experience and they need to be written.  It’s the manner in which I’m able to write about them that matters. It is the art and the craft of writing that can elevate a trite piece of writing to a piece that lives long after we’ve moved on.

The next issue I am having is one of revealing details about my son at this point in his development, perhaps influenced also by a divorce process (and thankfully both mom and dad are doing an excellent job as parents, still) as the vulnerable need not be made more so. This is my paranoia as his mother and I realize I am supposed to think about such things. It is my job and obligation. Even if he is resilient and strong (as we parents generally come to realize about our growing children), we are on our guard nonetheless. Writing about the vulnerable – be it children, disabled children who can’t speak for themselves, disabled adults, the aged and so forth, requires us to think much more deeply about how we write.

As I see Adam develop, my attitude has changed and softened significantly than at the time of his diagnosis. I think there is a huge urge of many parents to write about the diagnosis because there is narrative tension that is still interesting to the outsider. This is when most writing about autistic children really gets done. We read perhaps too much now (just think that a few years ago there was very little), on that D-Day or “diagnosis day.” There is a lot of interest from new parents of disabled children to relate to the pain and conflict of early diagnosis. Little is written about learning how to live with a disability in the sense that the worry dissipates. Mostly, what we read are memoirs about how parents seek to cure their children instead of learning about themselves as parents in a world that is filled with different kinds of people. Donna Williams remains the top of my list of autistic writers who not only write beautifully and artistically, but tell a story that goes beyond childhood. The tension is still there, but the story isn’t sensationalized for the sake of selling books.

Let’s face it: our lives are not like everyone else’s, which is why so many of us need to write.  “Suffering has always animated life-writing,” says Arthur Frank who has written about his own illness. Indeed that familiar theme of finding peace, a spiritual awakening, an appreciation for life itself, is a kind-of triumph-over-struggle theme that appeals to most of us in a challenging world. I think of Audre Lorde and her cancer diaries and poems that I devoured after my two cancer surgeries last year. Her honesty and artistry helped me see myself as fully human even with my stage of dwindling self-image and pain.

Yet what is especially disturbing to me is when that theme is diluted into a sugar-coated story, only telling of the good stuff — you know, how all our children are “angels” kind of rhetoric.  To my chagrin, I’m afraid that much of the “acceptance movement” has turned saccharine and in it a fear to acknowledge the challenges and the pain as well as the joys.

Conversely, when all a parent does is complain about how horrifying their disabled child is and disruptive to their lives, without qualification or deep circumspection, is equally if not even more disturbing, for we get a sense that we are not being told the whole story, or perhaps a story with a particular agenda and worse, we are being told that disabled children are a blight and burden on society thus threatening their right to exist. So in order to write a good memoir, and how we define what is good if not ethical life writing is what’s at stake here.

Frank says, with regards in how to respond to illness and disability, “what is done within the body, what happens in relationships and how existential and spiritual attitudes change – is presented as a sequence of choices. The writer’s identity becomes crucially implicated in how she or he makes these choices: a person’s responses are a measure of his or her character.” (p. 174 The Ethics of Life Writing).The stories we choose to tell and how we tell them in the case of writing about our children, is therefore an indication of our character.

Somewhere along the road to raising children, either at the time of birth or later on, our expectations were thwarted. That in and of itself has been enough to warrant many people to approach us and say, “you should write a book!” But how good of a book? To what end? What are we trying to achieve?  My soon-to-be ex husband even came to me regarding the circumstances of our divorce stated “if I were you, I would write a book about this.” What an invitation!! Not that I will necessarily take advantage of it for my own personal gain, for that is not the point here.

I did, in the past, write about many encounters with friends and family regarding discussions about autism and their reactions to Adam to which I was angry (an honest emotion), but used as illustrations of a day-in- the-life of an autistic family. I felt that these examples were especially important to illustrate how our society has been trained to react and respond, no less treat, disabled people. Those encounters in mere blog posts were enough to achieve that tension. In as far as maintaining relationships is concerned, some managed to stick by me and support the purpose of the posts, and others couldn’t handle seeing themselves within the narrative. I once received an email from a friend’s husband referring to my writing as “getting things off my chest,” thereby diminishing my feelings, our significant experiences and my writing. Yet, I write and express to get things off my chest, that’s for certain. It’s just that I hope not to sound pathetic doing it. I hope the writing transcends the individuals to illustrate the more important points —  and the point that we all have much to learn.

But isn’t that what writing, gossiping, telling stories is all about? I am making a general assumption here that all gossip is negative, which isn’t necessarily true. I will also suggest that gossip, for the most part in my view often has the sole intent of denigrating another person. So in telling true stories, intention matters.

Telling stories, it can be argued as parents of disabled children, is still important. It is especially important that we as parents write  well — truthfully and with dignity. I cannot say that I have accomplished to my satisfaction, the “writing well” part. To accomplish this, it takes great deliberation and like anything, practice. To live with disability in the family, as in any other oppressed minority group, is to also live politically whether we like it or not. This adds another sensitive dimension to our writing.

Many parents of typical children will not experience this to the same extent, if at all. For me to tell those stories during those early stages of Adam’s development were exceptionally important in navigating our way through ignorance and understanding it – my insecurity about such statements admittedly came of a place where I was also in their shoes, that is the shoes of the ignorant – completely unaware of the full extent of disability itself — meaning the community, the politics, the meaning and history of disability, the lives. Should I keep these stories to myself or do they benefit not only myself in my growth as Adam’s parent, but also others who are on the same path? Would those people still be my friends if I hadn’t of told those stories?  What is friendship anyway if we cannot be honest? Right…? (I am happy to report that the really great friends still hang around even if rigorous disagreement or debate is involved). Of this I would emphasize that the intention is important with regards to telling our stories. It might just be difficult after all, to be a writer.

In her essay, Friendship, Fiction and Memoir: Trust and Betrayal In Writing From One’s Own Life, Claudia Mills  discusses the risks of writing about one’s family and friends and seeks the meaning of friendship as her guide. Using Aristotle and Kant — “we seek the good for the other for his own sake and not our own,” (Aristotle) and “The strictest friendship requires an understanding friend who considers himself bound not to share without express permission a secret entrusted to him with anyone else,” (Kant)   –Mills painfully deliberates, as if her conscience is eating at her: “What contexts are we primae facie justified in sharing the stories of our most intimate associates with others?”

She suggests that she couldn’t have relationships if she couldn’t talk about them – that we benefit from talking about them and notes how secrecy can be “corrosive and damaging.” Yet there is a difference between talking or writing at someone else’s expense, as I said, in order to hurt them. While telling the truth may be hurtful to others, or be outright embarrassing, it is this shame that is the most costly to our peace of mind. There is nothing more liberating than living your life out in the open. But living mine out in the open does not necessarily mean I have the right to live Adam’s out in the open for him. So we must choose our vignettes and words carefully, without over-editing which also takes away from the authenticity of an interesting story. Mills takes the easier route and chooses to write fiction, even though her family and friends seem to recognize themselves in her stories.

For parents with disabled children, this writing can be a cathartic process and a way of breaking down the reductive view of our disabled children. Arthur Kleinman, in The Illness Narratives, suggests that people who are ill are reduced as people in terms of their pain and debility, or their illness. That proverbial medical view of the disabled person as a mere patient instead of a complex individual remains a part of the demoralization process. Instead, Arthur Frank turns it around. He calls his personal narrative a “remoralization process,” an act of telling a counter-story to the ones that we see all too often in the news and Hollywood and much of literary media where disabled people are used in the background like bridges to the “real” characters. In looking at narratives like Michael Berube’s Life As We Know It, and Thomas Murray’s, The Worth of A Child, and Cranes’ Aiden’s Way, among other parental narratives, Frank points out that we as parents write in order to break down the assumptions – that our writing can be “acts of justification” as we write to justify our children’s right to exist.

As I continue my writing and work to become a better, more artistic writer (I am hopeful with much more work), I am aware that to summarize Adam as a series of impairments, to finalize his character in the narration, is what the medical community already does. So I want to avoid this at all costs. “[Reflexivity] is moral work, since what’s at stake is personhood and its entitlements.” Most of us are all too aware of society’s rush to categorize our kids, to judge them, reduce them instead of viewing them as people with a right to be included in everything.

This is a great risk that we undertake as parent-writers — this act of finalizing our children, defining them  and thus imposing identity that has really not yet been fully formed.  As Frank notes about the writers of the exceptional memoirs cited above, “They resolve this dilemma, and keep a dialogue open, by refusing to say any last word about their children. The child’s future – his or her horizon of possibilities – is kept open, though this requires nothing less than redrawing the horizons of human possibility itself. These writings become teachings in the morality of respect: not principles of respect, as in Kantian respect for persons, but practices of respect, which the writing not only describes but reflexively exemplifies.”

I hope in my next post about writing about children, I will be able to compare the recent writings of Jenny McCarthy and Temple Grandin’s mother’s older book A Thorn in My Side, in order to illustrate what I consider to be problematic in the name of our children’s dignity and telling our true stories.

As for my story, it’s easier to dance around it than tell it at the moment during my set of current circumstances. I am only left with the deliberations of what and how to write next.

References:

Credit for the term “narrative tension” goes to Arthur Frank in his essay, Moral Non-Fiction: Life Writing and Children’s Disability, from The Ethics of Life Writing.
Claudia Mills, Friendship, Fiction, and Memoir: Trust and Betrayal in Writing From One’s Own Life, from The Ethics of Life Writing, edited by Paul John Eakin, New York: Cornell University Press, 2004, pp. 101-120
Ibid, p. 102 & p. 110-111.

The Benefits of Reducing Efficiency

Filed Under (Family, Inclusion, Single Parenthood) by Estee on 02-06-2009

It is no secret that divorce is overwhelming. Add to that being ill, moving, or receiving that “autism diagnosis” about five years ago has made my recent life path rather bumpy — a list of to-do’s and goals and I’m getting tired. If living our lives “authentically” (a popular word used so much today) is a goal, I might suggest that the way we live is anything but.

As a mother of a special needs child, there is more work as our children depend on us for longer periods of time. I’ve devoted my life to Adam, and maybe even garnered some of my identity from that. Yet, how can parents, especially those of us who strive to seek acceptance and advancement for our children in society create a balance? How can I still give to Adam all that I can, be the good parent, AND take care of my own needs, AND contribute to the world?

I may have found part of the answer in the bigger picture. The self-help books are okay, but they all seem a little saccharine. Sure, there are some good tid-bits of advice here and there — perhaps we all need to read them when we are in moments when the waters are just too deep.

As friendships dissolve (a natural consequence in divorce is losing “couples friends”), and I think I’ve gone as lonely as I can go, the insights and work of others have held me up.  It keeps me steady. It enables me to think about the future that is greater than my own issues, but also not whole without them, and that beckons me to become more a part of it.

As any parent — special needs or not — we are all familiar with the daily to-do lists and tasks that keep us running but make us feel empty. What have we achieved? Do we do our daily tasks with a level of intention that keeps us engaged in life and with others or are we just racing through? What is the goal for Adam and I, if not for all of us? That is the challenge we all face and I believe the answer is in slowing down and doing things with greater deliberation.

Also,  part of the answer lies in the communities we build — not from raping the land and a town with money-making developments, but in perhaps growing a little less and creating environments where humanity thrives.  Were we to have beautiful towns, places to walk to get our groceries from local farmers, events nearby we didn’t have to drive to, and neighbourhoods of children gathering to play again, rather than establishing “play-dates” weeks in advance, I believe we would all be less lonely and we would fulfill many goals we have as an autistic community.  Isn’t this what we want for our autistic children most of all? To be included, happy and less lonely? To be contributing members in our communities? How can we create this if we barely get to know our neighbours?

We all have that nagging feeling, don’t we, that we are all less connected to each other than we want to be? Fine, we in the autism community have connected globally via the Internet, but where do we go in our own towns?  Facebook, among other sites, tries in allowing people to advertise events. But what of just going out… unplanned? How many calls do I receive of parents with autistic children (now adults) who are desperately trying to find a group to belong to? And what must I do? I have to think of all the organizations that have formally created groups with specific meeting times that individuals must drive to. By the time we get this far, it already sounds like too much effort.

As I look at the work of Edward Burtynsky in Manufactured Landscapes, I was taken aback by the scale of growth and efficiency at the cost of humanity. His photographs of urban and industrial landscapes, he seeks not to judge our economic growth and efficiency, for he captures a sublime and repetitive beauty in that which we would otherwise call ugly, but he tries to raise our consciousness in how we are living — tenuously and on the brink. It’s as if he is saying, “okay, we’ve reached this point and now we have to change,” not as punitive, but as an empowering statement. We have created manufactured landscapes of such scope and scale that surpasses the building of the pyramids. For that we must recognize what we are capable of!!  Now, he asks through his work, where or what is the humanity of our economy?

In The Geography of Bliss and Deep Economy, both authors use the study to point out that “growth is no longer making us happy…Though our economy has been growing, most of us have relatively little to show for it.” (Deep Economy, p. 11). If every action in our economy burns fossil fuel, it also burns human energy. And the costs are apparent in the desolate backgrounds of Chinese culture, and the faces of a tired Chinese people — the fastest growing population and nation in the world.

So you might ask: What does economics have to do with raising children and marriage?

Absolutely everything.

“In 1946, the United States was the happiest country among four advanced economies; thirty years later, it was eighth among eleven advanced countries; a decade after that it ranked tenth among twenty-three nations, many of them from the third world. There have been steady decreases in the percentage of Americans who say that their marriages are happy, that they are satisfied with their jobs, that they find a great deal of pleasure in the way they live.” (Deep Economy, p. 35)

As I digest my life up to this point, and the general dissatisfaction of our society, I must consider how connected all of this is, like Indra’s Web. Divorce may be overwhelming, as are all the current problems in our world, but perhaps the answer in building a greater sense of satisfaction in our lives by creating more simplicity — shedding the complexity and just being honest with ourselves that we can no longer do things the same way as we used to. It involves, as in divorce, letting go.

It is no surprise to me that there is a strong resurgence of farmer’s markets — there is one I discovered in a nearby artist colony that I now take Adam to on Saturday mornings and it has become a real gathering place.Adam and I like to go out, ride the bike, pick up groceries on foot as much as we can, and we can be more aware of the energy we burn. The more attention and care we bring into our lives at every level, our quality of life improves. So this not only stands for the average family or person, but also for the special needs family, for what we need most is connection with others.

I think about the Supermom I was called to become when I was a young girl (I went to a Catholic all-girls school which further pressed me):  “You can bring home the bacon; fry it up in a pan; and never, never, never let him forget he’s a man.” That commercial tune rings in my head and makes me want to go back to bed!!  It’s not about pleasing everybody. We cannot, lest we displease ourselves. It’s about how we live and do we go to bed every night knowing that we lived our day well, without the frazzle and anxiety of what we must produce tomorrow. For perhaps to live life simply is not to do too much, but to do a few things well, including putting the intention back into the simple things we must do.

I have come to think that being proficient at one or just a couple of things is better than being the most efficient mother — the autism mom who advocates, “fights,” for her child’s rights, organizes events, sits on boards, writes articles, and barely has time enough to cook a good meal. It’s not that I’m going to necessarily stop all of these things, but I can’t do it all at the same time. The time has come to shed and to rebuild, to de-commit and commit, and to teach my son how to live a life well. I am sad to say that divorce has made me view life this way. But this is what happens when life hits you over the head. I may have still come to the exact same conclusions if I were still married, but I believe a marriage is a reflection of all the systems we build. And it too needs the commitment of simplicity.

What Grounds Me

Filed Under (Adam, Family, Single Parenthood) by Estee on 11-05-2009

I love this picture. It was taken yesterday atop of the CN Tower during a Mother’s Day lunch. Adam loves to kiss mommy and make her laugh (who says little auties don’t have a sense of humour!). As a woman going through the roughest times of her life in divorce (I will suggest that when someone you love leaves, it is like a death), it feels like a relief to count on the one thing that keeps me grounded and content. From this mom’s perspective, Adam and I are each other’s rock. We’ve managed to keep it together, despite lots of changes and a coming move to a new home. If divorce and moving be the top life stressors, then I will tell you, I think I’ve made it through.

I am sad to soon leave the home I built for Adam and my family and all that it represented. Someone said to me that a home is just four walls. But he was so wrong. A home is where the heart is; where love resides. My heart, though healing from a break, is intact. With a growing wisdom, I will raise a little boy knowing that where-ever Adam is, my home will be.

Actions Trump Religion

Filed Under (Family, Uncategorized) by Estee on 12-04-2009

I don’t mean to rain on your Easter Parade. Or for that matter, your Matza Brei. It is another religious holiday again and I wish everyone peace and happiness as you celebrate with your friends or families. Also, I would like to think of the vast majority of people who have no place to go today, who have no friends or families, or at least have not been invited by them to eat at their tables.

Religion and holidays tend to make me question everything that has to do with religion. I have seen and experienced unjust things on the “holiest” days of the year, for man cannot, by his very nature, live up to these expectations created not by God, but by man — the leaders of religions. I listen to people who won’t eat pork, but will eat a cheeseburger or shellfish, when their religion bans it. I am very interested to listen to the concept of “observance,” and “tradition,” but am equally interested at how individuals modify practice in order to suit their own needs. Religion has come to be something we consume and like all consumption, it eventually leaves us empty.

So what is it that we hang on to under the religious umbrella?

I can think of one thing: family and friends. We all want to be connected to each other. Religious holidays can sometimes force us to do it. But when the holiday is over, then what? I am concerned that what we lack is not religion, but connection and spirituality. That last word is so overused. It is sold on video tapes and spirituality is often tied in with some aspect of “becoming successful,” in a monetary sense — get in touch with yourself and the money will follow, and usually you can find some book that links in getting in touch with yourself and success in business in seven easy steps. But spirituality it isn’t concerned at all with money, achievement, success. It is concerned with love. Sometimes the money will follow and sometimes it will not. But even if it doesn’t, one can feel so filled and complete by doing the things we love. Love is about connection, a deep connection to everything around us so that we realize we are never alone.

“The Hindu-Moslem-Christian-Jewish-Buddhist believe about ultimate reality is beautifully summed up in the first epistle of Saint John: ‘Let us love one another, for love is God and everyone that loveth of born of God and knoweth God.'” (From Bell Hooks, All About Love: New Visions, p. 75).

Religion is the most segregating and alienating aspects of human life. And that is my humble opinion. It does not urge people to act out of love, but instead act out of pity. It says you will have a place in God’s kingdom if you do “good acts,” even if you just throw money at someone or some cause. Yet, it is the most selfish way to act. Instead, if we view God as a power within us, the power of love that transcends us, we are living in the here and now, fully, with dignity, love, and respect for all life. It means that when we love others as ourselves, we try to engage with them.

I hope we can all decide not to hide behind the matzah and the Cross, but come out and treat others with love and kindness. Seems to me the world and all its creatures are so in need of this action, above all else, for John says, “‘anyone who does not know love is still in death…’ All awakening to love is spiritual awakening.” I know this to be true as far as Adam has awoken something very special within me.

If someone is suffering in not being accepted by a person or a religion, or is experiencing extrication of any sort, let us all try to listen and share. Act out of love, not to save ourselves a place in heaven. For ultimately, we ARE each other’s pain, suffering and struggles. We are all one.

The “Adam Family”

Filed Under (Family) by Estee on 25-02-2009

As usual, I like to write most of my blog posts on the fly. Some are essays, some are just thoughts.

I’m going into the fifth month of my separation from Adam’s father. Separating after twelve years is not an easy task. It’s a real process of reflection and self-discovery and when children are involved, rebuilding a new type of relationship. By looking at pictures and old photos, we are reminded that what we build, even after divorce, is so important. Everything and everyone has something to teach us. Everyone we encounter is our teacher. My stepchildren are so important to me. Adam is so important to me. What I am learning is incredibly important as I learn to move on and continue growing.

So, for Adam and his wonderful family, I make this video as a tribute. I want Adam and the other kids to remember that what we built (and continue to build) is never really ever left behind. It lives within us. For even in divorce (despite the difficult process itself) what can remain, still, is so much love.

Has Acceptance Really Progressed?

Filed Under (Critical Disability Studies, Family) by Estee on 07-01-2009

The Convoluted Meaning of Acceptance in 2009

Autism, like many other mental disabilities, is mostly referred to as a parent’s biggest burden and disappointment. Most of our Canadian autism organizations, wanting to be “non partisan” want to express the fear and anxiety that parents face, while also now advocating for acceptance and hope and for a better life for autistic people.

There is a benefit and a problem with advocating for both. One the one hand, it opens up new avenues for parents to consider the possibilities and rights of their child and their families to be included and acceptance regardless of disability. That can strengthen and empower families.

On the other hand, advocating acceptance, while still starving kids or giving them unsafe “treatments” is antithetical. Acceptance is not acquiescence, but does not mean subjugating autistic people to unfair and dangerous treatment such hyperbaric chambers, segregation, behavioural intervention as a sole educational method, and other unproven medical or non medical treatments. While it is encouraging as a founder of The Autism Acceptance Project to see that people really love their children, it is still puzzling why people do not understand the difference between acceptance and why the “cure” does not embrace acceptance at all. We do not accept disability, still, here in Canada and yet we don’t want to seem like bad parents. So, we get lost in the sea of language that in the end means nothing at the end of the day. We don’t want acceptance to mean nothing. We must never dilute its meaning.

Between 1870 and 1930, Western society changed their view of children from “objects of utility” to exclusively emotional and affective assets. In 1920, Canada was one of the strongest proponents of ‘mental hygiene” and eugenics. Dr. Helen MacMurchy was appointed the first chief of the Child Welfare Division of the federal department of health (Clarke). In 1917, Bertha Winn, head of Victoria’s special schools, stated the following in an address to the friends and members of the Women’s Canadian Club at Victoria’s Empress Hotel:

“The histories of thousands of these cases [of mental deficiency] reveal the tragic and pitiable fact that unless special provision is made for their custodianship earlier in life they will find their way into …crime, pauperism, vagrancy, prostitution, and general indecency…All mentally defective persons are antisocial in the sense that their presence in the community means disruption, disorder and dependency. They are the running wounds of society, infecting it and weakening its vitality, placing blight upon each succeeding generation. There is only one way to deal with this stupendous evil, and that is in checking it at its source – segregating all cases of mental defectiveness from the normal population.”

By 1925, the Legislative Assembly appointed the Royal Commission on Mental Hygiene to combat the perceived increase of mentally deficient individuals which lead to the ultimate passing of British Columbia’s Sexual Sterilization Act in 1933. It behooves us to look at our Canadian history to know that we are not innocent in the segregation, maltreatment and incarceration of disabled individuals — that it didn’t just happen in the United States and in Europe.

The lines between social and economic policy back then were blurred and mentally “deficient” children were considered an economic burden while other children were considered “priceless.” Such a comparison was made at the birth of the Dionne Quintuplets in what Mariana Valverde argued that the girls were victims of what she called “fractures in social regulation, a phrase she used to describe the processes by which social issues and problems were shifted from the expected regulatory category (such as race) to another (such as gender), depending on time, circumstance, and individual points of view.” (Clarke) Valverde argued that Ontario provincial government defined them as an economic entity and more specifically, as a resource that was to be administered to ensure the best possible revenue returns for the province (Clarke). While they were portrayed to the public as “models of childhood, in the eyes of authorities, they were no more ‘children’ than Mickey Mouse is a mouse.” While children on the one hand were sentimentalized and protected, children with mental disabilities were overshadowed by their classification as “defectives.”

In autism politics today, the virulent debates over precious children continue –many organizations argue that is an autistic child’s right to “medically necessary” ABA treatment in order that they behave less autistic — precisely because children are precious and must there be “saved from autism.” Others still refer to the blight of autistic people on society and their economic burden. If they are not saved or recovered or cured, they will continue to be disruptive and dependent. Many other autism organizations will argue that because they value and love their children, they will do anything – anything unproven and possibly dangerous – to save their children from autism. The lines between loving, valuing and accepting children, no matter what disability, and “recovery” and “cures,” as a display of love are unnervingly blurred.

It is interesting that the span of one hundred years has not changed the way we view and display our love for our children — no matter under what auspices. The same existed during the eugenics era here in Canada as well:

“Although the BC government increasingly ‘demonized’ mentally deficient children, it would be wrong to believe that they were totally dehumanized or that all members of BC society, professional or lay, agreed with and supported the authorities’ views and treatment of these children. Indeed…many mentally deficient children were dearly loved by their parents and protected by their communities. In a number of cases, individual parents and whole communities were willing to go to great lengths and expense to ensure the well being and freedom of their mentally deficient members. Equally, some doctors and school board officials openly questioned both the growing public hysteria, fueled by the rise of eugenics, relating to the supposed threat mentally deficient children presented to society and the provincial government’s policies designed to combat this ‘peril.’” (Clarke)

“In fact, some officials argued that these children did not present an imminent threat to society and that wherever possible, they should enjoy the same rights as did normal children. In other words, while many individuals, especially in the BC government, attempted to demonize children defined as mentally deficient, many others sacralized them.” (Clarke)

Terminologies such as “high grade mental deficients” or low grade were also employed during that era to determine human value. The point is, we have traversed one hundred years since the eugenics movement spread like wildfire throughout Canada – where immigrants were turned away for any mental disability, when people were sterilized, segregated and incarcerated in institutions.

Today, we are still fighting. Fighting over misunderstandings between high and low functioning classifications of people and severity and not getting much farther than we did one hundred years ago. Mentally disabled people are still being undervalued and mistreated. We must question the purpose these classifications and the identification of autistic people in general. Parents want to adore their children — as long as they are as normal as possible — and will go, in the name of love at any length to do so — no matter what the cost.

Educating, including and accommodating autistic individuals in society without the classifications and current Canadian surveillance programs is real acceptance. Parents who accept their children still go to great lengths to advocate for their children in a society that continues to put up barriers to inclusion in our schools and communities. It is still exhaustive work, and work that needs much more support than it has been given. Many of us who accept our children do not wish to be “surveiled.” We just want to live as we are in peace, and learn and contribute like everyone else.

As long as we insist on classifications, identifications for the sake of putting people in behaviour treatment and normalization programs, we have simply not evolved at all. So let’s all take a harder look at what we really mean when we accept our children, autism, and people of all disabilities.

—-

References:

Clarke, Nic. “Sacred Daemons: Exploring British Columbian Society’s Perceptions of “Mentally Deficiant” Children, 1870-1930 in BC Studies, 144 pp. 61-89.

Mariana Valverde, “Representing Childhood: The Multiple Fathers of the Dionne Quintuplets,” in Regulating Womanhood: Historical Essays on Motherhood and Sexuality, ed. Carol Smart (London: Routeledge, 1992), 119-46.

The Understated Value of Grandparents

Filed Under (Family) by Estee on 24-12-2008

This evening, Adam and I went to Grandma and Grandpa’s for our Xmas eve dinner. We celebrate both Hanukkah and Xmas in this family. After opening our presents — something that Adam never used to be interested in and now has taken interest with a vengence with any prettily wrapped package — I sat back and watched Adam and Grandpa diligently putting together a model of an ear. It took a great deal of time and patience! Grandpa and Grandma must have thought, as Adam gets a few ear infections and he is hypersensitive of his ears being touched, that taking the mystery out the ear’s anatomy might interest him. I quite think it did. Leave it to the Grandparents to come up with such a brilliant idea!

I sat quietly in the background with a great sense of peace watching them working together. You see, Grandpa is a special person in Adam’s life. Grandpa is the man who teaches Adam so many things and loves to show him new things every weekend if he can get the chance. Grandpa cooed and sang to Adam in the days when I spent hours trying to get him to sleep. I would try, then if Grandpa was around, he would offer to try and ask me to take a rest. Grandpa would cradle Adam in his arms as if he was the light of the world, swaying him and singing to him in a deep, soft voice.

Grandma, don’t be offended — you are awesome too — feeding and catering to his every whim and need and taking him on subway rides and to the museum. You are awesome. I’ve never seen a Grandmother make so much fuss over her Grandson. But you see, it’s their only Grandson, and I am their only child. This really means a lot.

Grandparents are so incredibly special and I just had to sit and watch how calm Adam is with his Grand-dad. They have a special, unbreakable bond and I thought it was a good time to embed this in my memory forever.

Grandpa and Adam

Grandpa and Adam

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About Me


ESTÉE KLAR

I’m a PhD candidate at York University, Critical Disability Studies, with a multi-disciplinary background in the arts as a curator and writer. I am the Founder of The Autism Acceptance Project (www.taaproject.com), and an enamoured mother of my only son who lives with the autism label. I like to write about our journey, critical issues regarding autism in the area of human rights, law, and social justice, as well as reflexive practices in (auto)ethnographic writing about autism.