Snapshots: Grace Mixed In

This lively plenty has its bleak complement, of course, in all the things I can no longer do...These two elements, the plenty and the privation, are never pure, nor are the delight and wretchedness that accompany them. Almost every pickle that I get into as a result of my weakness and clumsiness—and I get into plenty—is funny as well as maddening and sometimes painful.  Nancy Mairs, writing in 1986
Coming to grips with the fragility and fallibility of the body, I spend much of my time reading the words of others who've traveled ground I'm bound to travel myself. Disability--which is really just that fragility and fallibility of the body that we will all experience in our own way--seems to be the dominating theme of my life. 

As I drove yesterday to the high school where I teach dual credit classes, I thought about the people in my life and realized that disability is ever-present in many of its potential manifestations and always has been. No wonder it is on my mind and consequently on my students' minds as I introduce them to writers who live with disability, or who like Peter Singer, discuss euthanizing the disabled. No easy or light reading, that's for sure.

No matter how many times I reread the pieces alongside my students, I still find myself surprised, edified, and often mystified (and sometimes outraged). I continue to read, to learn, to seek out answers to questions that grow ever more complicated. In truth, the longer I study the history of disability and how we have treated those who are different over the centuries and across the world, the less confident I feel that there are any clear answers to how to resolve human rights issues as long as we refuse to recognize all human beings as being equally valuable. 

My concern doesn't always focus on the broader issues, though, and some of the writers and assignments are ones that resonate on a personal level for me. Nancy Mairs and her husband George embody the challenges and blessings that disability can bring to a family. Nancy writes candidly, sometimes scandalously so, about what it's like to have MS. Because I want my students to understand that the pieces they read are simply snapshots, often carefully crafted ones, I selected three pieces over a 16 year period for them to read or watch so that they could look at the change that time brings to one's perspective.

Of all of Nancy Mair's pieces, "On Being a Cripple" (quoted at the beginning of this piece) is one of my favorites because she understands that at a primal level, laughter is liberating--a metaphorical way of giving life the finger. I think my grandmother, who is my role model for how to deal with a failing body and the requisite need for caregiving by others, would have liked Nancy, would have found ways to laugh at shared stories of sudden failures of the body that leave one shocked and angered and more than a bit tipsy at the unfairness of it all. Beneath the laughter is a tinge of despair at the loss of control. I know this because I have been the one laughing. Laughing is a way of keeping despair at bay.

Nancy's understanding of herself changes over time. In her 1986 piece she still resists the idea that she and this disease she has been struck with can be one and the same. She even says point blank she is not her disease, and I think, of course, this is true--we are not our diseases--and yet, whether we like it or not, we are impacted by them, changed by them, and when the disease is neurological in nature, who we are is wrapped up in them.

A decade later, Nancy considers this idea of the inseparability of mind and body.
 Here is my troubled body, dreaming myself into life: a guttering candle in a mound of melted wax, or a bruised pear, ripe beyond palatability, ready for the compost heap. The images, though they vary, always bear the whiff of spoliation. If there ever was a time of unalloyed love, I have long forgotten it, though I had hopes in early adolescence: that my breasts would grow magically larger and my mouth magically smaller; that I would become a strong swimmer and sailor and cyclist; that men, irresistably drawn, would touch me and I'd burst into flame. Mostly I was, as I was trained to be, disappointed in myself.  1996

And, at least in this piece, she acknowledges the reality of what she has lost, what she cannot have, and who she can never be:
  The "her" I never was and am not now and never will become. In order to function as the body I am, I must forswear her, seductive though she may be, or make myself mad with self-loathing. In this project, I get virtually no cultural encouragement. Illness and deformity, instead of being thought of as human variants, the consequence of cosmic bad luck, have invariably been portrayed as deviations from the fully human condition, brought on by personal failing or by divine judgment. The afflicted body is never simply that--a creature that suffers, as all creatures suffer from time to time. Rather, it is thought to be "broken," and thus to have lost its original usefulness; or "embattled," and thus in need of militaristic response, its own or someone else's, to whip it back into shape; or "spoiled," and thus a potential menace to the bodies around it.   1996
Reconciling one's disability with a culture that actively rejects disability is daunting. Self-loathing seems inevitable unless one rejects the cultural premise that only the young, the healthy, the perfect are worth living.

By 2002, Nancy, in her PBS interview for the documentary & Thou Shalt Honor, has mastered the ability to admit to the darkest of thoughts while still smiling. It is confusing to some of my students how she can smile and say she's wanted to be dead a number of times and tried to make it so several times. Dealing with the loss of independence and the need to rely on others for one's very survival, all while coping with depression...if that doesn't make for gallows humor, what does?

We smile, we laugh, we crack dark jokes because then we are not mastered by the absurd situations we find ourselves in. It is our measure of maintaining control and ownership of ourselves.

It can be no easy thing to face the idea that one is work and a whole lot of trouble, and Nancy does so:

Well, if I want to make things easy and comfortable for everybody, the only thing I should do is die. And having George participate in my care and having other people do the same, calls me into life. It says, despite your losses, despite your limitations, you belong here with us and we want you to stay. We want you to stay enough that we're willing to participate in the labor that it takes. That's perhaps the fundamental of caregiving -- to enable another to want to be in the world. Not just enable them to be, but to enable them to want to be in the world when it would be easier not to.
Historically, I'm depressive, but I'm a suicidal depressive. And there have been times when I've wanted to be dead, and several times when I've tried to be dead. And I'm pretty glad that it didn't work, most days. Most days I'm pretty glad to be here. 2002

She says in the documentary itself that caregiving calls one into life. Caregiving is validation of one's worth when that care is given willingly, lovingly, and respectfully. It is an aspect of relationships that we must steward in our children--that giving of one's time and self to help another human being is the greatest gift we can give to anyone. Our willingness to care in a way that is life-affirming both for the giver and the receiver--that's perhaps one of the most important lessons we can learn. It staves off barbarity--it lets the light in.

Her husband talks about caregiving as being circular. It has to have reciprocity in order for it to be validating for both parties. It can not be given stingily nor received in that manner. I suppose that would be its own circularity, but it would not be a positive circle.

As a child I was honored to care for my grandmother and I got back more than I ever gave. She provided me with the example of grace and humor and snark. She was generous with her attention and love, and her lessons guide me still today. I have been honored to see the circularity and reciprocity of caregiving with my children, who have required perhaps more sustained attention and effort than their neurotypical peers, but who give me so much more.

Much as my grandmother's grace and generosity shaped me as a child, my children's willingness to give of themselves to others and to me blesses me and shapes me. My son pours me coffee, happily cooks for the entire family, helps his sisters, gladly assists where he's needed (even though he often needs a good deal of assistance to stay on track), and my daughters are quick to fluff a pillow, slip a heating pad behind my back, tuck me in, and even put lotion on my feet.

They provide a great deal of caregiving of me even as I still care for them. I don't think I ever anticipated that this caregiving would become quite so reciprocal so young for them, but I am honored by their grace and willingness to offer to care for me. I suppose that means I have little choice but to follow my grandmother's path of grace and dark humor so that one day my children will have that model to look to as they chart their own course with a body that becomes recalcitrant with age and disorder. And perhaps that will make the journey (as Nancy writes) worth the very uncharted territory that's being crossed:

So one of the functions I can serve is help people to see that there are angles that they may not have considered. An extra vision. An extra perspective that they haven't had occasion to know yet, but that they might have occasion to know. --2002

Grace mixed in is all I'm really asking for. It would be unrealistic to expect more, and far too saintly to live up to. A little grace with a whole lot of snark and laughter to keep the despair from ever having a chance to settle in. I'll accept the occasional touchdown, but that's it; then it has to go.


Rapid Prompting, Facilitated Communication and AAC

Some of the most popular, continuously read posts on Countering have to do with rapid prompting, fc, and AAC.

I am all for giving our nonverbal children AAC devices and teaching them to use them to communicate. I think it's vitally important that all children and adults with speech/communication issues have an effective, independent way to communicate their thoughts, wants, needs. While FC and rapid prompting continue to make inroads into the autistic community, with several of the Autism Blogs Directory bloggers supporting these two methods, I think (I hope) these methods remain on the fringes, or if used, truly do lead to independent communication for the individuals using these methods.

The problem is that there's no way to know for sure--to know that the words credited actually belong to the individuals who have won acclaim and some fame from their going from nonverbal/noncommunicative to writing incredible insightful pieces (I don't believe that nonverbal means noncommunicative but that many people view the two as mutually INclusive).

I hate to consider the possibility that vulnerable individuals are being exploited, that the words credited, the thoughts and emotions and experiences belonging to these incredible individuals were instead the manufacturing of the people who facilitated.

I don't think that parents, and truthfully, even educators, who move into the murky waters of FC and rapid prompting are bad people, or stupid, or duplicitous. I think they are dedicated, loving and caring people who want badly to help those who are nonverbal find their voice, and in that mindset are willing to believe in miracles and so forget to be skeptical of the methods that promise such cures.

So when nonverbal individuals write a book and it's clear that in the past FC was used, I don't know what to think. I can take it on faith that the words are genuinely theirs and reflect their interior reality. My concern, though, is that if I do that, and those words aren't theirs, I've done them a disservice. I've participated in an exploitation.

I don't have a hard, fast answer as to how to handle those situations. I don't know whether to discount those words or embrace them. I think it is, on the whole, easier to embrace and believe in the genuine communication.

But then I think of those individuals who use AAC to communicate, whose parents and educators have not embraced Biklen's method, and the openness with which they show their children communicating and I think that FC and other methods that are similar and involve the manipulation of AAC devices to generate spectacular leaps in functioning seriously hurt those who work so hard to communicate independently.

After nearly four years of looking at the evidence from studies, reading the blogs that offer testimonials to the efficacy of these methods, and the blogs of individuals facilitated, I am no closer to figuring out how to show my respect for the individuals involved while maintaining my skepticism of the methods and my concern that vulnerable individuals not be exploited or denied the interventions that would allow them to communicate independently without the murkiness of FC and RPM casting doubt on that communication.

In a comment I wrote on the rapid prompting piece, I said,

Our children deserve our respect, our acceptance, and our unwavering commitment that in our search to help them achieve their potential we will protect them from harm and that means harm from the people who promise us to help us reach them.

I think that sums up where I am today, as well. We owe not just our children, not just this generation of children, this kind of conviction. We also owe it to future generations. Our actions ripple out beyond our own families and communities, beyond just this time frame. They matter--those who are vulnerable. We owe them our best. 



Several years ago, I read Michael Chrichton's novel on global warming and found myself occupied with going through his sources and trying to make sense of it all. Global warming denialists were often as well credentialed as the global warming believers (which is somewhat unfair as their belief appears to be based in reality).

Four years ago I took interest in and actively participated in the vaccine - autism debate, and once again each side was armed with people with MDs and PhDs.  It's no wonder people are confused.

Who do we believe when we are relying on experts in areas there is little likelihood that we will gain that expertise? No big deal if it's no big deal, but what about when it really matters?

Cue my latest reading list that pits experts in the same field against each other: depression and all that accompanies it. For fun I'm reading Kramer's Listening to Prozac against Greenberg's Manufacturing Depression.  And I'm alternating reading chapters in each book. Whiplash doesn't even begin to cover it. Who do we listen to when what we want is some semblance of reality?

I don't know the answer, and that means learning to live in an attitude of a willingness to avoid final judgment, to keep reading, listening, evaluating, and considering if reading vampire novels wouldn't be a more valuable use of my time.