Journeys with Autism

I’m honored to have the opportunity to post a beautiful piece by Phil Dzialo, author of the blog Healing, Empowering, and Thriving. Phil is the father of Adam Dzialo, a young man who was severely brain injured at the age of 12 in a near-drowning accident. Phil’s wife, Sharon Dzialo, has written a book called Ceramic To Clay about her family’s journey of spiritual and physical healing.

Being There by Phil Dzialo

Astrologically, Chiron is my destiny, and I accept it. It’s a predominant, although erratic, comet in my natal chart and is symbolized by the “wounded healer.” It represents our greatest wound and our deepest efforts to heal that wound.

Chiron was a centaur in Greek mythology who was a healer and a teacher but could not heal himself. He points to our deepest wounds and our efforts to rise above them. Because the wounds are deep, and our efforts to overcome them require hard and equally deep work, healing powers are potent. Chiron’s nobility is reflected in the story of his death: he sacrificed his life so that mankind could have fire.

We all are Chiron: the disabled, the caregiver, and mankind. I use the word disabled unconventionally because I believe that we are all disabled; only the manifestation differs. It’s only a matter of other people’s perceptions. Our deepest wound is the profound need for relationship, as evidenced by caring and being cared for. The wound outwardly is manifest in many ways: some cannot walk, or grasp, or speak; some cannot process the world of inputs or outputs; some have bodies and minds that are simply not functioning as they could; some are driven by uncontrolled desire; others, by a lack of resource.

We are all wounded and there is no normal. To allow normal into our vocabulary is to admit and to sanctify the worlds of have and have not. While all are wounded, some are more visibly so than others. The rejection or denial of these wounds subjugates us to a “life not worthy of life.” It is that indifference of which Elie Weisel spoke, a relegation of people to the hell of “no difference.”

The wound, of course, is a lack of acceptance of our profound interconnectedness. We the people of challenge, we the people who care profoundly for those with challenges, all long for that which evades us: a constancy of interconnectedness with life. The wound fails to heal when others too often look the other way, and are intentionally or unintentionally indifferent.

My son is non-verbal and non-ambulatory as the result of a near-drowning 12 years ago. He was under water for 25 minutes. He is wounded deeply; his eyes and smile are his instruments of healing. He has a presence through his aura that is evident to those who have “eyes to see and ears to hear,” and an open heart. His ability to heal is a function of his purity. His work is to show others that survival and happiness are possible without the accoutrements of things and places. His clearest communication is “Love is being here when you don’t have to.”

We do not ordinarily actively reject the challenged; we too often fail to understand their humanity and their journey. Their outward manifestation of the wound too deeply reflects our greatest fear of facing our wounds. How many of Adam’s friends have remained a presence in his life? None. How many of Adam’s relatives have reached out, provided help, regularly visited him, and acknowledged events in his life of healing? None. How many of our friends who promised to be there for “however long it takes” are around? None. (Well, actually less than a handful.) One person once said to us, “I can’t visit any longer because it’s like Adam can see into my soul.” Of course, it’s not only Adam; it’s the elderly, the widowed, the infirm, the dying who expose our wound.

The challenged are easy to dismiss and avoid: they can’t talk, they look funny (distorted bodies are hard to look at), they can’t speak well, they can’t party, they can’t go to the movies and dinner in the way that “normal” people do. They can relate, but it takes an open heart and a recognition that their need for interconnectedness is as strong as everyone’s. We who have less of a burden have an obligation to help others heal their wound and in turn heal ours. That can only occur if we are there for them with constancy, regularity, and passion in the way that they need us.

I can heal my wound by touching, by talking, by looking in the eye, by being present to those whose wound is visibly deeper than mine. This is my healing. There can be nothing about the other that makes me fear; there can be no other priority that draws me away from this interconnectedness. My life must provide that fire, as we are all one in the energetic, electric universe. Separation from others’ needs is the sure way to never heal our wounds.

My resolution for my life is simple: to be there for others in the way that they need me, not in the way I would perceive, which limits my ability to give. To rise above is to create a new world in the evolution of our consciousness. This will insure that the fire rages.

I’m guest posting today over at Claire’s blog, Life With a Severely Disabled Child. My post, Privileging the Visual, discusses the ways in which our culture’s emphasis on the visual presents difficulties for disabled people, whether our disabilities are visible or invisible.

Claire moderates all comments on her blog, and she keeps the discussion safe and civil. We’d both love it if you’d come over and join the conversation!

© 2011 by Rachel Cohen-Rottenberg

In an effort to give more visibility to the lives and concerns of those whose stories are not told nearly enough in disability circles, I’ve created a guest post series called Widening the Disability Perspective. I plan to open my blog space, on a regular basis, to guest posters from both the autism community and the wider disability community. If you are interested in guest posting, please contact me.

My first guest post, Meet Disability Norm, was written by Claire, who authors the blog Life with a Severely Disabled Child.

Meet Disability Norm

A few years after my daughter had her stroke and she became, as a result, severely physically and cognitively disabled, I started searching the internet for information, stories, references to…anything…that validated the life I was experiencing with this child. However, stories specific to severe combined disabilities were almost non-existent outside of the blog world (a world that I discovered only much later), and most searches involving “disability” tended to land on sites relating to activism and advocacy.

I learned from this virtual foray some of the basic characteristics of disability rights activism: the removal of architectural barriers, the refutation of the medical model in favour of the social model of disability, the engenderment of full-inclusion and community living policies, and the destruction of “better dead than disabled” stereotypes.

There is no question that these principles, these goals, on “paper,” are laudable, and their implementation long overdue. What happened in translation into a real-world working model, however, is another matter. Ironically, in their fight to “disable” limiting concepts embodied by a word like “normal,” many activists created an acceptable “norm” themselves, something I cynically call “Disability Norm.” Here is a sample:

The independent living movement has been an important part of this broader movement for disability rights. It is based on the premise that people with even the most severe disabilities should have the choice of living in the community. This can be accomplished through the creation of personal assistance services allowing an individual to manage his or her personal care, to keep a home, to have a job, go to school, worship, and otherwise participate in the life of the community. The independent living movement also advocates for the removal of architectural and transportation barriers that prevent people with disabilities from sharing fully in all aspects of our society. (emphasis mine)  (http://bancroft.berkeley.edu/collections/drilm/introduction.html)

It was repeatedly pounded home to me that my daughter could neither be happy nor “representin’” lest she was in a regular classroom environment, kept away from various “fix-it” therapies and/or surgeries, and headed toward a job living in a group home run by “Community Living” (or living independently, of course), where she could “choose” how she wanted to run her life. Ultimately, disability wasn’t just “natural;” it was a god-given gift to be celebrated!! Then, of course there was the tricky issue of “live and don’t let die”… Well, at least I got the “ramp-in-front-of-my-house” part right.

The fact of the matter is that my daughter’s needs are not supported by, nor even reflected in, Disability Norm. Because her inhibitory functions were destroyed by the stroke, she can’t stand overstimulation of any sort, be it physical or emotional. She needs to be “segregated,” to an extent, in order to be most comfortable and to function optimally. Full-inclusionary practices are at best uncomfortable and at worst unsafe. Ideological activists scream that there is nothing in between complete seclusion and full inclusion. I see many realistic options in between.

The realities of her physical condition require that she be under medical supervision: shunt, g-tube, drop foot, contractures, severe scoliosis, seizures, bouts with cyclical vomiting and hyponatremia, and near-constant physical pain. Furthermore, if there were a cure for “screwed-up brain,” I would give it to my daughter, not because I don’t love her exactly as she is, but because severe disability is no celebratory matter. Disability Norm has turned its back on the medical establishment where it should have gone in full bore to inform—and hence, transform—the model to embrace the broader social implications of its technologies and ideologies.

That my daughter could live “independently” or in a “group home” is a joke, as she can’t express her needs fully, and requires full care (with specialized equipment) and 24-hour supervision to watch for her to suddenly stop breathing. The belief that every residential environment is equivalent to “warehousing” denies the reality that such environments, when optimal and necessary, can provide better staff, better stimulation, better physical therapy, and better opportunities for supervision, comfort, and safety to the severely disabled. The complete ideological abandonment of the “institution” model in favour of community living threw the baby out with the bathwater. Now, there is little incentive to rehabilitate existing institutions, and community living remains an unsafe environment, still plagued with abuse and neglect: rock and a hard place.

Disability Norm, most significantly, oversimplifies issues of life and death. In the land of severe disability, this is never a black-or-white issue. We parents of these children are often faced with awful decisions when it comes to just how far we should or should not go in treating our children when they are in crisis. (You may go visit two such individuals here and here.) Sometimes, by the grace of god, we don’t have to make the ultimate life-or-death decision, because our children die naturally, in their own time. But more often than not, we parents are left having to decide their fate. Though the intrinsic value of any human life is, to me, irrefutable (Peter Singer be damned), there can be no blanket statement about whether or not death is preferable to life with a disability. For our children, it all depends on the disability and what is transpiring in any given moment. Sadly, the lack of any presence of disability advocacy in hospitals leaves new parents of severely disabled children particularly vulnerable: when faced with only one, narrow perspective of disability, death is usually perceived as the only option. Would Disability Norm more vigorously approach, rather than run away from, the not-so-esteemed halls of the medical establishment, this would not be the case, and these issues would be painted in broader shades of grey.

Genuine advocacy and activism would account for the existence of the most extreme end of the disability spectrum. This defies the establishment of “acceptable” parameters—Disability Norms—when it comes to the treatment of individuals with disabilities. It holds true to the fundamental principle that all people with disabilities are unique, valuable human beings who have a right to live in society in a way that best accommodates them—with the understanding that sometimes, this means life outside of society, or one where “society” is delicately and gently brought to them. Such advocacy would include a vigorous dialogue with, rather than animosity toward, the medical establishment, in order to bring it up to speed on the realities of life with disability. Such activism would be informed by the very real life-and-death situations that caregivers of those severely disabled face all too regularly.

With this broadening of perspective, I would be less likely to hear the subtle whisper of “hypocrite” in my head when reading about those vigorously decrying “ableist” views and “normate” policies, all the while positing their own Disability Norm.