Last week, I wrote about the differences between brokenness and limitation, a distinction that is common to us all. Two readers wrote back with their own experiences as friends with adults with Down syndrome. Both accounts demonstrate the complexities of these issues, and the need for humility before God when asking what it means--for ourselves and for others--to live a full life:
A few years ago, I became friends with a young woman (now 30) who has Down's, which has given me a totally different perspective. Going into that friendship, I didn't know what to expect and sort of feared that a lot of my response to Karen (not her real name) would be driven more by a sense of what I "should" do than by a genuine response to her as a person.
It's been five years now, and our friendship has proven much richer than I expected. She came and visited me in Chicago when I lived there, we text almost every day, and she occasionally takes mass transit so we can meet for lunch. She can be very stubborn and has hung up on me when she doesn't like what I'm saying, but she has a great sense of humor, a long memory for things that sometimes surprise me, and a generous heart.
The people through whom I met her have a son with Down's, a bit younger than Karen (she's 30; he's maybe early to mid-20s), and I know they've done a lot of different meetings with people to pray for him to be healed. Your observations about the Christian narrative certainly reminded me of them, though I can't recall ever explicitly discussing with the parents what their theology of Down's is. I do empathize with their longing for their son to be and do more, however. With Karen, I see the persistent longing for independence (intensified, probably, because hers is a somewhat dysfunctional home), yet realize she'll probably never live alone, never drive, etc. And that's hard -- to see longings in her that will probably never fulfilled, and to know that she has enough awareness of her limitations to be pained by them, yet also may not fully grasp that certain things will probably never be possible.
The second reflection:
I worked with a client with down syndrome who needed quite a bit of help. I think that in many was he was very happy... he had friends, went out and did fun things, and was loved by his caregivers very much. He liked to go out dancing, skiing, and out to eat at restaurants with staff and his friends. However, because he wasn't allowed to access the community independently because he did not have the cognitive ability to do so safely and therefore needed staff with him at all times, he couldn't do these things nearly as often as he wanted because caregivers have so many other things to do... other clients to care for, a household to run, paperwork, and other activities required by the agency. He had very little choice in getting to do the things that were meaningful to him when he wanted to do them. It wasn't because I or other staff didn't care or didn't try, we just could not give him the life that he wanted for himself that he may have been able to have if he was not so dependent. We just couldn't. Is that kind of dependence the same kind of "limitation" that all humans experience, or is it some kind of "brokenness?" Should we reform the supported living system so that he can have more choice and freedom in his life? To what extent is that even possible? Should we help people with intellectual disabilities to be more independent so that they have more choice and freedom? Or is his lack of freedom and choice acceptable because we humans are all dependent on others to some extent? What do you think?
One thing both writers demonstrate to me is a willingness to be interdependent, to weave their own lives together with someone different from them. Both cultivated friendships--real relationships of giving and receiving. And as a result, both care deeply about the wholeness and well-being of their friend. I'm still working out my own thoughts about the value of independence, but I'm grateful to both of these women for gently challenging some of my assumptions, and I'm grateful for their witness to the value of interdependency.
What do you think? What is the value of independence? How much do our cultural norms play into our desire for independence and our compassionate concern that others also experience this independence?
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3 comments:
I find myself answering questions like this not as "either/or" but as "both/and." Our culture definitely values independence to a fault. People who are financially and vocationally successful, for example, like to pretend it is all due to hard work (which allows them to disparage people who struggle to hold down a job and work their way out of poverty). But in reality, no one succeeds without dependence on others, from the parents who paid for college to the first boss who was a mentor and forgave early mistakes, and the spouse who cares for house and children while the breadwinner works 14 hour days. Independence is not, in and of itself, required for happiness, and dependence brings a richness of its own.
And yet there is something life-giving about self-sufficiency. The pride our children share when they say, "I can do it myself!" And beyond empowerment is convenience. I remember being stuck in a hospital bed encased in a plaster cast for months. My parents did their best, but it just plain stinks to be unable to use the bathroom without asking for help. I can directly trace my overabundant need for control as an adult to the lack of control I had over the simplest of tasks as a child.
In discussing our cyber-conversation last week with a friend, she kept coming back to the fact that we ALL are dependent/disabled/limited--as you've pointed out, limitations are part of what it means to be human. And yet, she also insisted that ubiquitous human limitation not become an excuse for glossing over the suffering of those with genetic disorders. There is real pain in being unable to do what comes so easily to others.
I wonder, in the case of the second man, how much independence would've been enough. He wasn't able to do the things he enjoys as much as he wanted. I'm not either, although, my limitations are because of the choices I've made (to have 6 kids, to homeschool, to live on one income, etc.) versus disability, and that's a pretty huge difference.
Basically, I have no answers, but I'm sure I'll enjoy the discussion. :)
I want to chew on this some more, but I reacted pretty strongly to the insistence of independence as the highest form of being. After spending the last 4 months in a recovery course for my own independence of sorts, I'm learning that we were created to be woven into each other's lives - that dependence is a good thing, and that life without it is less than whole. I grew up in a very privileged world and was given all the tools necessary for independence - it was a goal, an ideal, and something my family valued. While I love my family dearly, and appreciate every opportunity they've given me - and they've been incredibly generous! - my resulting struggle with anxiety, drivenness, and loneliness has convinced me that there must be more to the way that I'm put together. I guess I don't believe any more that the goal of life is to stand on my own two feet - not in the same way, anyway. I have learned that being deeply rooted in community, deeply connected to a sense of being that is greater than just my ability to put food on the table or choose what I do with my spare time has actually given me the freedom and power to be able to thrive, and to be able to succeed in ways I could only dream of when I was operating as a lone ranger.
I'm not sure how this applies to the Downs' situation, but I believe from reading Henri Nouwen that the same sort of wholeness in dependence exists for those with mental and physical disabilities. That in some ways their explicit dependence calls out our own neediness in powerful ways. He seemed to speak of L'arche (the community where he chose to live after leaving a life in academia at Yale) as a unique picture of the body of Christ - one that was actually more holy for this very factor. There was no getting away from the fact that disabled people needed help, and it taught him to rearrange the way he thought about his own place in the world - to see himself as just as broken, just as needy, and just as loved and valued because of the ways they were able to care for him. Anyway, those are my first thing in the morning thoughts.
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