This action might not be possible to undo. Are you sure you want to continue?
, I glanced up to see my clinical supervisor peering over my shoulder. Her glance bore a little annoyance. In truth, I was leaving abruptly and with little provocation. The stress that is always present when high expectations meet with sudden shifts in outcomes was very real. She asked me, courteously, where I was going. I paused and said, “Actually, a bit of a change for me…I’ll be working with adults living with severe developmental disabilities.” I can hardly forget her response. “Oo…” with the appropriately disgusted look that accompanies that sound. The supervisor had her masters in social work. She served, as I had, a deeply underserviced population. Many of the adolescents we worked with were categorized as high risk sex offenders, by the time they were ten. They were often filthy. The homes we went into were the definition of uninhabitable. Our clients had not been clean, beautiful, or glistening specimens of humanity. But, to this incredibly committed advocate, they were ten rungs above severely disabled adults. I have come to realize she is not alone. Every page has its margins—removed from the center. And every margin has its very edge. There are many who this society cares for, challenges the powers that be on behalf of, and takes a stand for valuable rights. But mostly the same politics that played out in high school continue to dominate the discourse. The kids who really weren’t cool to be with then—the autistic, the one cerebral palsy, the cognitively impaired—still aren’t cool to be with. They still receive an “oo…” from society. There is a hierarchy of marginalized today. The ones who receive a good bit of attention, who you hear championed often, are quite frankly easiest to love. And in truth, adults living with profound disability are not easy, not convenient, not necessarily terribly
rewarding. It makes sense why progressive circles often forget to mention, let alone include, this population. Yesterday I was eating burgers with Mike. Mike is a fifty five year old gentleman who is profoundly cognitively impaired. He recently lost his long term job with a reputable employer of disabled persons. His days, now, are spent at home, arguing with his sister who is also challenged. Their mother, now well into her eighties, recently the victim of a massive stroke, acts as their referee. Occasionally he meets up with a friend, or cousin. But today we are having lunch. I can only understand one out of every ten or so words. It is difficult to hear what he says; he speaks with an impossibly thick tongue. His jokes, the ones I can make out, are inappropriate. He teases me. Teases me as others have teased him. Mike wears a dirty shirt, with stains and holes at the pits. And as we sit in the burger joint I watch as ketchup drips across his face. I quickly hand him a napkin, and glance around to make sure he will not be readily observed. For now we are safe. No one sees. In a few minutes I will take Mike home, his outing will be over. Truth be told, I will be relieved. It is difficult to simply be with this person. He is not inspiring. He is not the winner of special Olympic trophies. He is not altogether friendly or caring. He bears no great witness to Love that is beyond him. And he is not young any more—the positive lenses of Hope that we are often able to view tragedy through are growing cloudier for Mike. His options are running out. This is a story that will not end motivationally. This is exactly why the mental health supervisor, so accustomed to working with teens in trauma, couldn’t find the charity to consider this population. There is very little personal reward here. As a society, we value growth, optimism, change, perseverance, transformation, evolution. But for Mike, and millions like him, these are not truths. These are not the paths forward. So what of them? What of the persons who remind us that not all can be made
better, can be made whole, can be transformed into something shimmering? How do we relate? Culturally? Communally? And for spiritually minded individuals—what place do they have within faith communities? Tragically, as I have already stated, there is very little room given to the truly “least of these.” While there are monumental efforts towards inclusivism—it seems somehow shallow to me. An attempt to make “them” like “us.” Teach the blessedness of self determination (aka rank individualism), promote employment (aka. Work as selfworth), provide resources (aka consumerism and consumption). These are the transmission of values to persons with disabilities. This is what we assign to them. Let us teach them. And of course we colonize in order to connect. But what can Mike teach me? Profoundly, I am beginning to realize that Mike is a vision—a vision of myself. Sometimes my worst fears of being helpless or at the disposal of others. Of being voiceless—disconnected from my own ability to articulate what is best or right or true. Of being worthless— in its most literal sense, “without worth” to people, without value, an object to be discarded. But in that moment, I begin to understand that this is not simply my worst fears mirrored—it is my reality. In truth, I am often helpless. I rarely have the voice I think I do. And all the things I often connect worth to are routinely proven to be false; my talents, my ideas and ideals, my things. Finally, sitting here with Mike, with my friend, I find myself in a different kind of relationship. One that holds little personal gain— there’s not that much in it for me. I am here for someone else entirely. This relationship is a gift. That is when I see how much like Mike I actually am. Perhaps not to others. But a deep spiritual level, I encounter God—the originating power of the universe, the source of Love—as here, simply for me…I do not offer God much. There is
little I can know or do for God. But I can be loved. I can experience a sense of God’s presence with me. And unlike my attempts the do the same, God is not offended by my thick tongue, my lack of presentable demeaner or my obvious flaws. God is somehow overjoyed in my presence. This is something transformative–this is something Mike is teaching me. My experiences with adults living with profound cognitive disabilities is slowly changing me. Perhaps not as quickly as some would hope. But I find myself shifting, asking different questions— and coming up with different answers. I find myself living into a different kind of thinking.