"Before you can search for truth, you must be interested in finding it." -Miroslav Volf

Thursday, February 17, 2011

Are the Developmentally Disabled a Gift to Us?

I thought I might expand on a throwaway comment I made in my previous post. I suggested that those who are disabled should be considered a gift to me, to us. I didn’t simply include that in my list of gifts for the sake of making a longer list. It comes from past experience and still-developing convictions about how we should understand and sympathize with the situation of the disabled.

I feel like I can only really speak to the developmentally disabled, as opposed to those who have mental illnesses (like schizophrenia) or physical illnesses (like nonfunctioning legs). Actually, I’m going to offer a further disclaimer and say that what I share can't necessarily be generalized for all, but simply reflects my experience.

Between 2007 and 2009, I spent one day a week working with three developmentally disabled (DD) men. The three of them—Kevin, Robert, and Sam (not their real names)—all lived under one roof, with 24-hour staff accompaniment. Even while they were sleeping, there needed to be two staff on duty (three during the day) at all times.

My title was “direct care worker.” And it was truly direct care. A very small amount of my time was spent doing administrative work. The major portion of my time involved feeding, bathing, assisting in toilet use, cleaning up when needed, entertaining, and “talking with” them (quotes necessary).

Kevin is in thirties. He is blind, relatively thin and frail, unable to speak much beyond a few words, has a tendency to slap himself, and rarely leaves his chair. When he does, he must use a wheelchair, or walk with assistance from staff. He has family that occasionally visit him, but most of the time his “company” is staff that are willing to interact with him through talking or giving him various objects to touch.

Robert is in his forties, and also blind. He can walk, though obviously needs guidance due to his lack of eyesight. He has a large build, tall and slightly overweight. His family visits less often then Kevin’s. Whereas Kevin is rather irritable, Robert always seems happy. He can’t actually say anything, though he occasionally belts out loud moans of delight. He too mostly sits in his special chair, seemingly needing very little stimulation to remain content.

Occasionally Robert gets this look on his face that makes it seem like he knows something you don’t, that he’s on the inside of some grand joke which others, despite our much higher-functioning bodies, are not.

Sam is the most challenging of the three and is in some ways—if I’m honest—my favorite of the three. He’s in his early thirties (though he looks like a teenager) and has no family. When last I worked he could see fairly well, though his eyesight was declining and may be gone now, due to self-inflicted injuries on his face. When Sam wants attention he’ll often beat the crap out of himself; it seems he enjoys the care given to him by intervening staff who restrain him.

Sam and I used to go for walks, hand in hand, throughout the neighborhood, often going to Burger King for fries and coke. While he can’t speak, he likes to make noises; one of his favorite games was to make a noise and gesture with his hands, then have me repeat. He also likes it when I scratch or massage his back, and he likes to sit in his outdoor rocking chair in the backyard.

Sam’s quite the prankster, too. I remember one (of many) instances where we were sitting on the couch together, looking at a magazine. I felt like my left side was getting strangely warm. I looked at Sam, and he had a big goofy grin on his face, his few remaining teeth shining brightly. He had just peed on me, the urine soaking through his pants onto mine. He was quite proud of himself. I was not proud of him. Strangely, now, I look back on the moment with fondness.

These three men live very different lives than I. I am free to have a reasonable hope in such things as my career development, travel ambitions, self-actualization and character growth. These men—as far as I can tell—don’t, but instead live very simple lives. I cannot fully understand the depth and intricacy of their thought life, but it doesn’t look like much from the outside. And yet I’ve seen them very obviously happy and content, even having some experience of being loved.

My conviction is that these men—as they are—are a gift to us, to the human community. I wrestle with that statement, but lean toward embracing it as personal belief. I often felt like people who would see us on our occasional group outings would look at these guys with pity and sadness. I think many people think about DD people in this way. I do at times, and yet I question such pity.

I was talking with Robert one day, just rambling on about something that was on my mind, as he listened, almost like a Catholic priest, giving me the space to say my own piece and find relief through my verbal dump. Before I got up, I told Robert that I am excited to one day speak with him at the end of all things, in God’s new world, when all his limitations will be gone and he will finally be able to express himself, thanks to the healing and restorative power of God.

Yet immediately after I left, I had second thoughts about that statement. I still am not yet sure what I believe about this. For someone who is mentally and emotionally “all there” but is permanently in a wheel chair, it seems reasonable to assume that if that person will experience the reality that many place their hope in—of God’s new creation (or “heaven" if you prefer), that their legs will be functional. Though who really knows exactly how all that works; at the end of the day, I think we have to be honest and admit that much of our understanding of the afterlife is speculation, as we now “see through a glass darkly.” Well, I have to admit that; you don’t have to.

To the point: Perhaps Kevin, Robert, and Sam in their current mental and developmental state, are beautiful and whole in God’s eyes, and in no need of “fixing.” I think without a strong communitarian view of the world and people, it’s hard to see the legitimacy in that assertion. But I believe part of what makes God’s Kingdom so spectacular—both the “now” and “not yet”—is that we love one another, look out for one another, take care of another, carry each other’s burdens. It seems fair to think that we may have needs in God’s new world, and may need one another to help fulfill those needs.

Maybe Sam’s scars will be gone from his self-flagellation; maybe Kevin’s bones will be stronger; maybe Robert will be able to see again. But (for example) Robert was born blind. Perhaps he has a stronger sense of taste or touch than I could ever understand or experience. And maybe the three of them, in heaven, will never be able to fully process like us, and thus, will always be in constant need of help. Maybe in heaven, Sam will still need others to help him shower, Kevin will still need others to put his socks on, and Robert will still listen to me while I blabber on.

And maybe that is our gift to one another. It’s probably obvious that these men have been a gift to me in the way I talk about them. And I believe my assistance to them, along with countless others, has been a gift to them. Might this exchange of gifts continue in heaven?

I don’t mean to sound despairing. I suppose one of the questions inherent in all this is: what does it mean for humankind to be healed and made whole? Does it involve the personal well-being of every individual, or is it more about restored relationships, an incredible ability to give and receive love to one another?

I don’t really know. A part of me hopes that I will one day be able to converse with these men. But part of me also wonders if, just as it seems a stretch to imagine a tree in this life suddenly gaining the ability to run a marathon in the afterlife, it might be similarly implausible to imagine Sam, Robert, or Kevin being that much more high-functioning in our eternal future, since that’s never been a part of their experience in this life.

But maybe I'm wrong. And I certainly don't mean any offense to others with DD family members who may have different hopes for their loved ones than I. Though maybe we're on the same page.

Either way, these three men are both now and forever loved by God. And I believe that I can trust God to be just, creative, and good to them in whatever way seems best. Maybe for these men, who have always needed the constant care of others, to be robbed that constant care would leave them feeling empty rather than fulfilled. We are made to love and be loved, I believe, and I’m not sure one need be “all there” to experience real, divine love.

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