10/25/2012

Abuzz: Ann Coulter, the Disability Community, and Where the Power Really Lies

You'd have to have yourself hidden beneath a rock the last few days to have missed the latest rally-around in the online disability community: Ann Coulter, who loves nothing better than pissing people off in as outlandish a way possible, chose to describe the president with the "r" word. I'm not using that word; I don't like it, and I hate how easily it has become a part of people's vernacular.

But it is just a word. The word is not the problem; it's the underlying disgust, disrespect and disvaluing behind it that's the problem. And in the common vernacular of my college students, I have rarely heard it used with that subtext. It's been used offhandedly, in a way to signify air-headedness, as an oops--and it's usually used towards their peer group in that same way--there is a lightness, a lack of ill-intent there--and when that's the case, I'm not going to be the word-police. I have never seen a student use it towards another in the way that Ann Coulter used it in relation to our president, although I have no doubt that it happens all too often.

I don't care if you like our president or not, but it's absolutely reprehensible to speak publicly about the leader of our country with such derision (I would argue it's inappropriate in private as well). And it's completely offensive to use that word in that manner, and then when confronted about it, to call readers who have a problem with it that word.

The solution, though, is not to call names. It would be easy, gratifying, to call Ann Coulter all kinds of names, to speak with derision right back at her. Satisfying, even. There's nothing like a string of curse words to release the tension.

Ann Coulter rarely speaks without derision. She is poisonous, her words laced with venom, so why listen to her? Turn the tv off. Block her tweets. Give her what she fears most: let her wither away, alone, ignored, forgotten.

We each have the power to reject other's condemnation, derision. We can refuse to accept, refuse to acknowledge those who would tear us down.

We can, as a community, decide that those who co-opt the medically designated language for those with intellectual differences, to deride others, or to even laugh at their own shortcomings, are not referencing our sons, daughters, brothers, sisters, friends. There's no way that the r word, and all the negative connotations apply to those we love and know, to those of us who are faced with challenges.

All that derision, all that negativity, even that jocular use of that single little word--it doesn't apply to my son. There is nothing retarded about my Bobby. It's not even a word that he would consider applied to him. It's not one I do, either. And honestly, if I did--I would reject that derision in how she uses it, and turn it around. If the president is at all like my son, then use that word, because for me it would mean this: honest, kind, considerate, ethical, valuable, important, worthy.

Words are not things we can hold in stasis. Words are not things we can control. Nor are the underlying meanings that people place on them. We cannot stop people from using words we find offensive.

People who are outraged by the use of the r word throw idiot, moron, and imbecile around freely, and never consider their origins, aren't bothered by the realization that the r word replaced them. Special needs, a term to replace all of those, also is used today with derision, with laughter, and no longer applies to those with challenges, well, at least not entirely.

Language moves and changes, and we can either allow others the power over us by accepting the judgements implicit in the co-option of the medical terminology or we can stand up and reject others' attempts to belittle not only those with neurological differences, but those they throw that terminology at.

We are not at our best when we hold others with derision. We do not hold moral high ground when we throw harmful words back at others who have acted hurtfully. We can not change those who wish to be hurtful. We can only stand and bear witness to the reality that often goes unnoticed: those who live with challenges we perhaps can't even imagine cannot be reduced by Ann Coulter. Their value is inherent.  We blog as parents, friends, relatives, and professionals to showcase our experiences with those who face uphill battles against a society that rejects differences--to show that, to stand with them, to help create a society that values neurological diversity. And those who live with those differences blog, write, live, to demonstrate that the true stakeholders in any conversation about disability are those with the disability. Their voices matter and they are worth a thousand Ann Coulters. They cannot  be diminished by one woman's foolish words.


10/14/2012

Immersion: Peter Singer, Harriet McBryde Johnson and Spock

It's no surprise that when I get interested in a topic I opt for full immersion. Come on, people--you've seen the zebra print! You've seen the wigs!

What's my latest? Apparently, a deep immersion into Peter Singer, whose chapter "Taking Life: Humans" I've assigned to my students in Comp 1, along with Harriet McBryde Johnson's "Unspeakable Conversations."

I've asked my students to read these two pieces and write a two page analysis of these pieces. Whose argument is stronger? I've asked them to suspend emotion and attempt to read both pieces rationally, unemotionally, with the reminder that it isn't who is making the claims--it's always about the claims themselves and the evidence provided.

Here's the thing, though: these aren't science-based pieces, where there's solid evidence to use to bolster the claim. These are the big questions: what does it mean to be human, to be alive; what determines quality of life; who has the right to life. Big questions that science ultimately cannot answer, not when we're moving beyond the facts of humanity. All humans are humans--but are they all persons.

Utilitarianism, Singer's approach to life, is apparently a Spock kind of thing: the needs of the many outweigh the needs of the one, and we all saw how that ended in the Star Trek movies--Kirk makes it clear that the needs of the one are just as vitally important as the needs of the many--indeed when we sacrifice the needs and rights of the individual for the society, society as a whole loses.

Singer's chapter is dense and intense reading, especially when one tries to keep emotion at bay and really understand what he's arguing. It's tempting to read his chapter as intentionally inflammatory, to hope that when he argues that abortion and selective infanticide are morally equivalent that he's really trying to get people to realize that abortion is not morally acceptable, but I know that is not how it's taken by critics, and given his other work, not how he appears to mean it.  Viktor Frolke does a good job of summarizing Singer's position without distortion:

Moreover, Singer’s utilitarian worldview, which defines good or bad by the pleasure or suffering it causes, leads him to believe that the life of a human being is not always sacred or worth living. Death is sometimes preferable to life. The 54-year-old philosopher from Melbourne maintains that the life of an infant is not automatically more valuable than the life of a higher animal, say a pig, especially not when that infant has all kinds of “defects.” Parents should be allowed to have the life of a severely disabled baby ended, according to Singer, just as a pregnant woman is allowed to have an abortion when she discovers her embryo will become a disabled child.
I picture my students confronting this material, this simple chapter on its own merits with no context, and question whether they will read it carefully, troubled enough by the ideas laid out to go back over it and make sure they really understand what Singer is laying out. Or will they skim it, miss the finer points, fail to have their own ideas on personhood and the value of human life stirred so that they really consider the moral ramifications, whatever ultimate position they find they hold. There's no way to predict how much of themselves my students will invest in this material, if they will experience the discomfort that comes from facing these big ideas. I can only hope they will--that they will find themselves challenging the status quo, that they will embrace the cognitive dissonance as they work out these complicated, entangled ideas.

I've reread the chapter several times--tried to make sure that I understand the claims Singer is laying out for selective infanticide of disabled babies and nonvoluntary euthanasia--the ideas of personhood underlying these ideas of his--that parents should be able to actively end the life of a sick, deformed, or otherwise not-right baby--that the consequence is no different than passive removal of care for the infant, allowing "nature" to take its course. I've gone beyond, explored his webpage with dozens upon dozens of essays, articles, and interviews. I've watched youtube videos of him, trying to understand how he can argue that there is a moral imperative to help others, to eliminate and reduce suffering, but still think killing disabled infants is morally acceptable, and I think I've found the key to how he rationalizes this apparent contradiction to helping end poverty and suffering of third world children with being able to say with no sense of horror that if he had been presented with his newborn child and he had Down Syndrome, would he choose to let the child die:


What would you have done if one of your children had had Down syndrome?If [the fetus] had a blockage of the intestines, which is a common complication, I would have refused permission for the operation. If it did not have blockage or some other complication, but we knew a couple who would want to raise the child, we would put up the child for adoption.

In some ways, it seems clear that he views infants as interchangeable, that if the first one is defective, then let it die (or actively terminate its life) and have another one. It's cold, it's hard, and it's horrific. But, if we accept his premise that there is no difference between a fetus and a newborn other than location, and it's morally acceptable to kill a fetus, then it is also morally acceptable to kill a newborn.

In this video, Singer discusses our moral obligations, not just to help those in need, but also to not harm (see 7:58 minutes in). And yet, although he does not discuss selective infanticide of disabled newborns in this piece, one wonders how he reconciles this belief about helping/not harming and the deliberate, intentional ending of the life a disabled newborn.

At 6:59, Singer talks about putting oneself in the shoes of another, "is the priority of reducing or preventing the suffering of others." It is this one line, I think, that allows him to work hard to reduce global poverty and animal rights while at the same time advocating selective infanticide and nonvoluntary euthanasia. Utilitarianism argues that the consequences are what is relevant--if the consequences of various actions are the same, then the mode for getting there is irrelevant (or morally equivalent). Singer presumes suffering--suffering of the parents, suffering of the family unit, suffering of the disabled infant, and concludes that quality of life is so reduced as to be morally acceptable to end the parents' suffering by letting the infant be euthanized rather than allowing a drawn out death due to deliberate withholding of nutrients and medical intervention. To Singer, it is more human to euthanize the infant or the comatose or senile, bedridden individual than to allow a long, slow "natural" death.




Harriet McBryde Johnson found herself in the strange and impossible situation of engaging with Singer, someone she felt believed she should never have been allowed to live, and yet despite this cold, utilitarian view of the value and worth of individual human beings, was unfailingly polite to her.

People have accused Singer of being a Nazi, as Frolke notes, and Not Dead Yet's Stephen Drake (a facebook friend of mine) has written often about Singer, denouncing his positions on both selective infanticide and euthanasia. Not Dead Yet's Diane Coleman has called Singer "the most dangerous man on earth." In the same article, Singer acknowledges: "Some of what I say seems obscene and evil if you are still looking at it through the prism of the old morality. That's what happens when morality shifts: people get confused and angry and disgusted."

All of this leads me back to the original concern regarding my students and the texts I select for them to read. Will they go beyond the snapshot that a text provides? Will they think to consider the context? The person? The other writings? Will they read it carefully, working to keep from judging the writer? Or will they react in a knee-jerk fashion, engage cognitive biases and employ fallacies to avoid really thinking about the issues the texts raise?

And beyond that, will I? How far will I allow myself to go, how deeply will I invest myself to understand a man and his ethics, an ethics that I find myself horrified by when it comes to the selective infanticide and nonvoluntary euthanasia, but supportive of when it comes to the importance of helping others in need. With me, of course, the immersion will be complete--all of his books are either in my to-read pile or on their way here in the mail. In the end, while I might struggle to help my students to consider the claims irrespective of who is making them, I want to understand the man who has made this his life's work, who can so care about animals and their rights, but argue at the same time that human infants and severely compromised adults have less right to live than the animals we eat. It is the man who, in the end, interests me and leaves me befuddled.


10/13/2012

Eleven is a Good Number

In so many ways, Lily is a miracle. Three years after Bobby's stroke, 2 years after we'd been told that Rick's vasectomy reversal had failed, I woke up one morning in February 2001 sick and I knew that feeling. I remembered it from when I was pregnant with Bobby all those years ago, and sure enough, the two home pregnancy tests I took that day confirmed that I was, indeed, pregnant, pregnant after we'd given up hope and were beginning to look into adoption. 

Lily was born 5 weeks early in a tiny hospital that really wasn't equipped to deal with a newborn in respiratory distress. At three in the morning, before I'd even held her (she was born at seven earlier that evening and whisked away to get what oxygen they could give her--they couldn't intubate), she was taken by ambulance to Syracuse, a 90 minute drive away, where there was a NICU. Those were scary days, but she improved and we took a ten day old 5 pound baby home, where she's been making messes and delighting us ever since.









Happy 11th birthday to our miracle girl. You are amazing, sweet, funny, and brilliant. You are also loud, opinionated, stubborn and incredible. You're also a great deal of fun to be with.


She would totally wear that outfit and a wig and go with me, dressed in similar fashion, to Walmart, and how cool is that?

10/11/2012

Time for some cat pictures...



Jack is one of the most awesome cats ever.

Dude ain't too shabby either!

10/07/2012

Nine Years in the Blink of an Eye


Rosie was the only half-planned pregnancy. We were going to start trying back in January of 2003, but I figured the first time we "tried" was safe--that I wasn't ovulating. Less than a week later, I knew I was pregnant--I know that's weird to know within a week- but I did with all three of my pregnancies--the morning sickness was almost instantaneous. We had her name planned years before she was born, naming her after her grandmother and great grandmother, Elizabeth, their middle names, and Rose--she was Rosie from the get-go. 










Oh how she's grown over the nine years. She is funny and sly, honest and sweet. She is sensitive to sound and melts down everyday, overwhelmed by the demands the world makes on her--she keeps it together at school and lets it all out at home. We call her Shrieky at times, because when she gets upset she shrieks, which leads me to clapping my hands over my ears, just as she does. She got that from me--not the shrieking, but the sensitivity to noise.

She won't answer questions she doesn't want to or doesn't understand. She won't ask for help, either, or explain what her confusion is.

She is an artist and draws beautiful pictures, looking on her iphone at the image and diligently reproducing it.

Lining up her counting bears remains a favorite, calming activity.

She loves her sister, often snuggling into her, trying to be one.




The last nine years have passed by in the blink of an eye. I could have never imagined them, the adventures, the challenges, the wonders we would experience in being Rosie's parents. She amazes me and makes my heart overflow (yes, Lily, so do you and Bobby, too).  Rick and I are delighted each day with her heart, her humor, her honesty. We are impressed by her willingness to try new things, to work harder, and her continuing dislike of showers. She has not made parenting an easy task, but the effort we put in to being her parents, her advocates, her supporters is worth it. She makes us better people and happier people, too.

Happy birthday, Rosie.

10/06/2012

The Power to Label: Finding Our Own Swagger

One of the interesting things in the online autism world is how the use of labels and definitions created by mental health professionals are being taken over by the community. Autism is redefined away from a mental disorder to a neurological difference, and labels are adopted by individuals and reworked into personality traits and features that are innate to the person and not a signifier of defects  or deficits.

There is plenty of pushback against this, with many parents insisting that their child is not autistic, that autism is not a fundamental and natural neurological difference but instead is a disease, a disorder, something that has gone horribly awry. Kim Stagliano, in her latest piece on Huffington Post, politely pushed back when autistic individuals argued her title, with Autism Sucks in it, was offensive to them. Autism, she argued, was a DSM diagnosis, not a lifestyle, not who her daughters are.

Both young and older adults who identify as autistic, who see themselves through that prism of autism as a neurological, natural difference, have fought to have their ideas heard by parents, to change how people, especially parents, talk about autism and autistic individuals.

Obama, in the recent debate, used autistic rather than person-first language and is getting both accolades and grief for that terminology. Almost all state organizations and even many non-profits, even those specifically focused on autistic and disabled adults are insistent on person-first language, while those active in the international online community are comfortable with identifying as autistic. There's an active and heated debate on autistic versus a person with autism that's unlikely to change any time soon. After all, when you have people like Ann Coulter insisting civil rights are only for black people, the idea that the disability community might have the right to self-identify and choose its own labels and definitions for those labels is a hard one to wrap one's head around.

Since disability is so prevalent in our society, one would think that we would have a better handle on it, be more accepting of it, and have found a way to discuss it without acrimony. According to the US Office on Disability,
  • Today, 54 million people in the United States are living in the community with a disability. That’s one in every five people. According to the most recent census data, around 52 million of them reside in the community (US Census Bureau 2002). Additionally, about 2 million people live in nursing homes and other long-term care facilities.
  • Some people are born with a disability; some people get sick or have an accident that results in a disability; and some people develop a disability as they age. 
  • The reality is that just about everyone – women, men and children of all ages, races and ethnicities – will experience a disability some time during his or her lifetime.
  • As we age, the likelihood of having a disability of some kind increases. The likelihood of having a disability increased with age. For those 45 to 54 years old, 22.6 percent have some form of disability; for those 65 to 69 years old, the comparable estimate is 44.9 percent; and for the oldest age group, 80 years old and over, the prevalence of disability is estimated to be 73.6 percent.
Really, given the wide array of possible issues that exist and give rise to impairment, it ought to be an easy thing to have full inclusion and a society that it is structured with the idea that there are a range of functional capabilities and that the infrastructure should be built around this. Of course, it's obvious that this is not the case.

Not only does our society not lend itself to full inclusion of those with disabilities, it actively decides who is disabled and who is not. Disability is not, according to James Charlton, something the individual decides on, nor is disability inherent (despite the Office of Disability's assertion that some are born with disabilities): "disability is based on social and functional criteria. This means, first, that disability is not a medical category but a social one. Disability is socially constructed."

How many people in the wider community would be surprised at this idea that disability is a socially constructed thing that is imposed by society onto individuals? Charlton writes that "People do not get to choose whether they have disabilities. Most political activists would define disability as a condition imposed on individuals by society."

The argument being made here is that where society considers a trait or a feature to be within the norm and an acceptable variation, disability does not exist. Where society does not accommodate or accept a functional difference, the society imposes disability on the individual with the difference.

The overarching goal of most of the competing interests in the disability community is to create full participation in the community and society the disabled individual resides in. It's to gain equality. How people go about this is where much of the conflict arises. One side argues autism is something that has been added on to the person, obscuring the true person, and the key to equality is a cure. Another side argues that autism is a natural, innate difference and that neurological differences are normal, natural variations and therefore equality exists--society needs to change to see that and make the accommodations to see that equality realized.

In the end, whoever has the right to label and define has the power. Currently, society labels and identifies, and the medical model of disability is the power-holder. The fact that the DSM-5 has been delayed in its publication as the public weighs in on labels and definitions is an indicator that the medical model is inadequate and that deficit models are not helpful when it comes to creating equal playing fields for all individuals, regardless of their functional capabilities. Deficit models are inherently about isolating individuals from society and stigmatizing them as different and lacking. Charlton notes "that when a person becomes disabled, he or she immediately becomes 'less.'" The disability rights movement is about changing this--about removing the shrinking of a person. In order for the disability rights movement to succeed, though, the majority of society will need to take up this call, as well. Surely, as we move into the category of disabled as we age and accrue more functional differences, this will become an easier thing--after all, if there are 52 million people out in the communities now, living in society, our numbers together are sufficient to change the way the disabled are treated and viewed.

We will, first, though, have to stop seeing ourselves as less simply because we are faced with challenges that illness, disease, and neurological and physical differences impose. Part of that undoubtedly lies with claiming the right to label ourselves.

Labels have power and choosing our own label lets us give the metaphorical finger to others (and sometimes the literal finger). As Nancy Mairs shows, labeling ourselves can make us cocky, give us back our mojo:

I am a cripple. I choose this word to name me. I choose from among several possibilities, the most common of which are “handicapped” and “disabled.” I made the choice a number of years ago, without thinking, unaware of my motives for doing so. Even now, I’m not sure what those motives are, but I recognize that they are complex and not entirely flattering. People—crippled or not—wince at the word “cripple,” as they do not at “handicapped” or “disabled.” Perhaps I want them to wince. I want them to see me as a tough customer, one to whom the fates /gods /viruses have not been kind, but who can face the brutal truth of her existence squarely. As a cripple, I swagger.

10/02/2012

Way Too Hard

We become parents, some of us, on purpose. We spend months dreaming, planning, getting ready, and are overjoyed when our new baby comes into our lives. Some of us are surprised by the pregnancy, and we have to figure out how to adjust, how to adapt, what shape our lives will take.

There aren't always happy endings, either. Babies desperately loved and longed for sometimes aren't ours for very long, and parents must learn how to cope with loss when they hoped for joyous bounty--a new life to change and shape theirs.

Whatever the way we become parents, whether we lose our little one, whether we find ourselves with a baby with a disability, or a baby born perfect with all ten fingers and ten toes, one thing is certain. We are way too hard on ourselves as parents when we are faced with adversity and challenges. We beat ourselves up when we feel we've let our child down, when we've been human and made a mistake, or not known about some special trick or tool or tip.

We are even harder on ourselves when we have a child with a challenge. We face scrutiny from medical and educational professionals, from the general public, from our own families whose support we are counting on the most.

We are too hard on ourselves and way too hard on other parents. We judge and we find ourselves sorely lacking. We worry. We second guess ourselves. We take a difficult situation and make it harder on ourselves with our doubts, our worries, our certainty that we have irreparably failed our children because we didn't do X or did Y.

And when we turn away from judging ourselves, we are vicious in our condemnation of other parents.  We've really got to stop this before we teach our children to doubt themselves, to worry over everything, to find themselves lacking, and before they turn all of that onto others.

Do you love your children? Would you take a bullet for them? Brave uncomfortable and uncertain situations to fight for the things they need? Are you trying to make the world a more understandable and navigable place for them?

Of course you are and of course you do. You do the best you can and when you know better, you try to do better. You don't expect your children to be perfect so why should you expect you to be, either, or for, that matter, any other parent going through uncharted territories trying to raise a child or children with issues and challenges?

Sure, it's easy to kick ourselves and kick other parents, too. Anger lets us cover up the fear and the worry, the anguish that keeps us up at night. It distracts us.

This world is not an easy place and so often we feel alone and misunderstood and completely incapable. We need to quit making the world harder than it has to be. We need to reach out to parents who are struggling and give them a soft place, a place of understanding and acceptance. We need to reach out to other people and let them know that it's okay--no one has to be alone.

Twenty years ago, with Bobby, that was a time where we were alone. We did it on our own. Times have changed. There are more of us now, and we can and should make sure that no family feels alone and isolated and misunderstood. We do that by showing and feeling compassion, by reaching out and making sure there are soft places for everyone to express their realities and know that they'll receive back acceptance.

Rick and I may have figured it out on our own, alone, with Bobby all those years ago, but we are blessed to have so many friends with children like our girls and Bobby, so that we are not alone. We have a broad community of support and acceptance, as do our children, who are accepted and appreciated for who they are, issues and all.

Everyone deserves that. It's way too hard, otherwise, and when we have the power to make things easier for others, how can we not?

10/01/2012

Have a Little Faith: Standing Together (or why guardianship isn't the end of the story)

My son Bobby delights, amazes, frustrates, confuses, awes me, sometimes all at once. And sometimes, because of a disconnect between accepted norms for our growing children and the reality that norms aren't about my son (or my daughters), the situations we find ourselves in causes my heart to hurt, to ache. Milestones and moments that pass him by are difficult, usually for me and not for him, and I think it's okay to admit that my heart cracks a bit each time another one goes by.

I think it has to be okay to find a way to communicate our sorrow honestly, in a way that is true to how we, as parents feel, and at the same time respectful of our children's integrity and a wider community's concerns about how we talk about all things autism.

There are times when life kicks us in the gut and lands us on our ass. Applying for guardianship of a child who is reaching adulthood is absolutely one of those times. It is a raw, visceral pain, one that slices into our hearts and cuts us to our core. It's the moment where denial is once and for all washed away, dashed, and the reality of probably-wont's takes up residence in our being.

Bobby will be 23 this year--five years since we applied for guardianship. This year I will once again fill out the paperwork to extend the guardianship another year. I will write down how he spent his year, how things changed for him or did not, whether he engaged in recreational activities. I will account for the decisions made on his behalf and ask that my husband and I continue as his guardians for another year.

The first couple times of doing this were painful, a continued reminder that the disparity between Bobby and his peers simply continued to widen.

It's still not a piece of cake to do the paperwork. It's not something I'm ever going to celebrate--it's not something a parent should. But the reality that my husband and I stand by Bobby, not as his decision makers, but as his guides, as his support system to help him make good decisions about his life changes a painful process into a meaningful one, a chance to take stock, not of the disparities, but of where the year has taken Bobby, what skills he has learned, how he has grown, his increasing autonomy, his growth, his happiness.

Being my son's guardian makes me his protector, his teacher, his guide. It does not mean he exists in eternal childhood, never to reach manhood. My son is a man, a grown man with feelings and beliefs and wants, and the more I entrust him with the chances to make his own decisions, the more he grows and is capable of making those decisions.

We can, as parents, choose to remain in the raw, visceral pain that we will and do feel as our hearts ache for what we want our children. It's completely understandable that parents want for their children everything we have, that the loss of that hurts us, hurts us both for our own loss and for our children's loss, as well.

We have a right, as parents, to be angry, to be outraged, on our children's behalf for the lack of needed services our adult children need. We should be mad that there are no clear roadmaps, no easy route to follow to figure out how to make our children's adult lives as rewarding and fulfilling as possible, to find them meaningful work, safe living spaces, freedom from abuse and disrespect.

Of course we are terrified for our adult children when we think to a future where we are not there to assist; we worry about whether the world will be a kinder place because of the work we've done with our allies--other parents, autistic adults who blaze trails for our children, and concerned citizens and service providers. We worry about who will stand with our adult children and help them where they need it, look out for them, care about them.

Because our adult children need a community, need people in their lives who care about them, we must work to create that for them while also letting go enough to let them create it for themselves. We have to push ourselves not to opt for the safe route, keeping them isolated and safe and protected from the world. Instead, we must accept a lifetime of living on a tightrope, always pushing not just ourselves but our children to try harder, to accept some level of risk, to go out into the world, pushing the boundaries.

Instead of retreat into the pain that the loss of an accepted pathway to adulthood and independence makes us feel, as parents we have an obligation, a sacred trust, to our children to guide them towards as much autonomy as they can handle--and we don't know what they can handle until we let them try and risk.

I may hold guardianship for my son, but it does not mean he is a legal child, nor that he will always be, for the rest of his life. Each year, we must reapply--it means that he is not yet ready to stand alone. Not yet. It means I stand between him and those who would take advantage of him. I am his counselor, his ear, but I am not his stand-in. I am not living his life. He is, and as such, each and every decision he can possibly make about his life should be his.

We can wallow, as parents, or we can take stock and put on our big girl and big boy pants, and work to create a world where no one falls through the cracks, where abuse is not tolerated, where respect is given to all people, where accommodations are the rule not the exception.

I am confident that when I no longer walk this earth that my three children will be okay. I choose to believe that with their efforts and mine and our community's efforts, we can create an environment where they will continue their lives, getting the assistance they need without compromising their autonomy or integrity. It means being a part of the community, working in the community not just for my children's sake, but for all our children's so that a support system exists and that checks and balances exist to minimize the blind eye bureaucracies so often turn. It means having a little faith that my children (and yours) will grow and learn and build meaningful lives where interdependence is the norm and misguided notions of independence are left behind.