Disability in the Wild

content warning: descriptions of ableism, brief mention of infanticide, abandonment, and neglect of people with intellectual disabilities

Curing the Desire to Cure

When I was in fifth or sixth grade I remember going to the library to look for books about neurology. I walked away with a dozen textbooks that I know were way beyond my comprehension. But I began to read through them undeterred, convinced I could find a solution that no doctor had been able to find. I so desperately wanted to rid my brother of his disabling conditions that I began reading about neurology so that I could find a cure. It sounds so ridiculous to me now that I can hardly believe it.

In the 25 years that have passed the only thing that has been cured is my desire to cure him. My childhood desire to fix his disabling conditions was innocent enough, born out of a longing to help him become normal, which as I reflect on it now was something I inherited from my family and peers. Innocent or not, it is, as I type this now, something I deeply regret. I was wrong. I’m infinitely grateful that I never pursued a career as a scientist or doctor motivated by hubris and a desire to cure him and all others like him.

While it is difficult to know exactly when my attitude towards his conditions and disability changed, there are some markers on the path, guideposts that I remember passing that indicate a major route change in my thinking and feeling. One such marker is the painting above by Tim Lowly of his disabled daughter, Temma.

I don’t remember exactly when I first learned about infant exposure, the supposedly ancient act of abandoning infants in natural places, especially children who were born disfigured or disabled, but it became a continual and potent source of grief for me. Images of my brother, abandoned somewhere in a grassy field, would force their way into my consciousness. The thought of him suffering alone like that was too much to bear and remains too difficult to talk about more.

Seeing Temma on Earth reminded me of the very real ways that my brother, and others like him, are frequently abandoned and neglected, even by their family, almost always by the wider community. Lurking behind these potent feelings is a conception of the world, specifically the relationship between the human and nonhuman world, that I hadn’t really explored before but that shaped the way I experienced this painting and the feelings it evoked.

Threat of the Wild

There is a tension in my inherited ideas about my brother in particular, and disability and disabling conditions in general. It is a dissonance that runs much deeper than just the problematic ways I wanted to cure him of his condition.

On the one hand, if I’m honest with myself, as a young adult I always conceived of my brother’s disability as something abnormal, an aberration or mistake that occurred by chance and that, given the right tools and information, he could be separated from. This belief was cultural, handed to me by family and friends, sometimes in coded language but oftentimes explicitly stated, and widely shared.

On the other hand, there was something quite natural and unremarkable about his existence to me. Unremarkable because I grew up with him and never knew anything different. He could be no other way, so the idea that he could shed his disability never entered into my mind (until it was placed there, perhaps). Natural because there was a quality to his temperament and behavior that was unconditioned and instinctual. Simply put: he was wild.

He very obviously didn’t fit in with rest of my peers or even family. Not only did he obviously look different, his actions and vocalizations clearly made people uncomfortable. The social pressure to reject those parts of him that were most wild was partly what made it a challenge for me as a young person to accept him as he was. I could perceive a clear and strictly enforced boundary between the human and nonhuman, between human culture and nonhuman nature. My brother, because of his disabling conditions, was seen as more nature than human. He was a threat to human culture, that is, unless he could be reformed or remade into something that was more acceptable, something that looked more like a human and less like an animal.

It is difficult to convey how much effort and work has been put into eradicating the wild parts of his nature—to domesticate him. It was never something I was comfortable with, trying to teach him to be more like nondisabled humans. But I didn’t know enough at the time to understand why it bothered me.

the Earth Was Her

There are parallels between my inherited views of my brother and his disability and my conceptions of the nonhuman, natural world. Nature, and especially the “wilderness,” was something out there, a separate world distinct from and in many ways opposed to the human world.

Leave humans out of nature. Let nature be as it is—untamed, undomesticated, wild.

I was to respect and appreciate nature as something inherently different from it. I go to wilderness areas to be reminded of the sublimity and grandeur of nature, but then I leave when I’m finished and return to the human world where I belong.

My inherited view of my brother and his disability followed a similar trajectory: he was wild and uncivilized and needed to be cured in order to be welcomed back into the human world. Most people viewed him as nonhuman and in need of intervention to be made human again. Cure his disability—cure his wildness—and then he can be fully human.

As I started to question and reject those inherited beliefs about my brother, and to appreciate him as he was, wild nature and all, my views of the natural nonhuman world lagged behind. I still acted and unconsciously believed that nature and wildness was something out there, something separate from me and the rest of humanity. But something started to change when I revisited Temma on Earth a few years ago: she wasn’t alone anymore, separate from the rest of her family and community, abandoned to die in the harsh wilderness; she was the earth and the earth was her. Her humanity and wildness were one. The lines that had so clearly divided what was human from what was nature were not just blurred but completely erased.

Caring for Nature

I consider Temma on Earth a trail marker not because it had an outsized effect on me when I first encountered it, but because of how revisiting it five or so years later coincided with a dramatic shift in my thinking and feeling about disability, my brother, my relationship to place, and the natural world. It was as if I had turned back on the path I was on and so saw the same landscape but from the opposite direction. Temma on Earth hadn’t changed since I saw it last, but the context now was totally different—I had changed. The painting represents both the transformation in my worldview (or at least the beginnings of a transformation) and the catalyst for that transformation.

My unquestioned, inherited beliefs about nature remained an unconscious belief through most of my life. I loved to be in nature but it was always something I was separate from, something that humanity was separate from. Nature—not humans—was something wild and undomesticated, and that was a good thing, as it should be. That boundary needed to be maintained and respected. Humans should allow nature to rule her own domain without interference. We can reverently come and worship at her temple occasionally but must depart and leave her behind as we return to our human lives. I always hated that but never knew what to do about it.

My unquestioned, inherited beliefs about my brother and his disability stuck with me for longer than I want to admit. I loved my brother but still wanted to cure him of his disability. I wanted to remove those parts of him that resisted being domesticated and allow him to become more fully human and participate in human society and culture. At the time I believed that the failure to do this meant he was rejected by both humans and nature. And so when I first saw Temma on Earth it was a depiction of my deepest fear for him: abandoned and alone, forsaken by his human family and wild kin. My fear of this happening to my brother is partly what led to me taking care of him full-time, to ensure that didn’t happen.

Fortunately my views about my brother and disability have changed. But this image now represents something much more profound to me. Not just the curing of my own desire to cure him, and not just an acceptance and appreciation of my brother’s disability and wildness, but the erasing of the boundary between the human and the natural.

Ultimately Temma on Earth helped me realize that my inherited understandings of how I’m supposed to relate to my brother and his disability and how I’m supposed to relate to the natural world and her wildness are, if not from the same place, then intimately related. How we relate to nature is connected to how we relate to people like my brother; what we mean when we say “nature” is connected to what we mean when we say “disability.”

While accepting, appreciating, and valuing my brother as he is was a necessary and extremely important shift in me, it isn’t sufficient. If his very existence threatens the belief that the human world and nature are separate, then there is a new challenge that my life with him presents: to learn how to live, relate, and care for the natural world in the same way I have learned to live, relate, and care for him.