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?