Everybody go read this thoughtful and poignant reflection on how the church has unfortunately absorbed our culture's utilitarian ethics. Daniel Salinas' daughter, Karis, was born with cerebral palsy, and he writes about his experience with the well-intentioned but totally inadequate response of Christian community:
"We thought that we would find compassion, understanding, empathy, help, rest, and a friendly hand in the Christian community, but instead we found the same utilitarian ethics as in the secular world. For most believers, including the majority of our family members, there were two options: Either God heals her, or God takes her away. They posed questions like: What sense does it make to live like that? Isn’t it better that God takes her away instead of letting her suffer here? Innocent questions, yes, but behind these questions we saw the same arguments that secular scholars have proposed....
Death is our enemy. But in our case, for most of the believers who came to comfort us, our daughter’s death was the best thing that could have happened to her and to us. For those people, she was better off dead. They were not that blunt, but the message was clear: She is better off now, no more suffering, no more pain.
That was too much for us to bear. Would anyone in their right mind say that to parents who are burying their seven-year-old “normal child”? Yes, Karis lived with much pain and suffering, but how much better to search for ways to alleviate the pain and not celebrate death. Does our God not care about life, all life? Are we not supposed to promote life? So then, why did our fellow Christians keep telling us that it was better for our daughter to die?"
We need desperately to rethink how and why we value people, and how we can support and love those with special challenges of all kinds. Go check out L'Arche for a great example of this.
And also very importantly, we need to learn how to grieve with people. There's a very simple answer we should remember when we're tempted to avoid those in mourning by claiming "we don't know what to say": don't say anything. Take a cue from Job's 3 friends. When they first show up to comfort him after the loss of his family, they sit in silence with him for a week. It's only when they open their mouths that they get into trouble. So if someone is mourning or grieving, and you want to offer them a platitude about God being in control, or how every cloud has a silver lining, or how really, it's better this way...just shut the hell up and be there.