Healthy people have a horror of disability. I feel this horror myself, and I am the parent of two children with autism. When my first son was diagnosed, my immediate reaction—this is intimate, but I have published one article revealing this—was that I needed to kill him and kill myself.
The thought that ran through my head, over and over again, was: “He has no life, and neither do I.”
I was in a clinical depression. By the next morning I was still in a clinical depression, but at least my mind had cleared on the rationality of two people needing to die because one small boy had been diagnosed with a developmental disability.
My psychiatrist talked me through.
“Why would you assume that your son will have an unhappy life?” she asked me.
My psychiatrist told me that there had been a fair amount of research done with disabled & mentally ill people—she had done some of it herself—and they all have the same level of well-being anyone else does. (People with clinical depression, she said, are the one exception. Extremely low ‘quality of life’ is almost the definition of depression.)
Since then I’ve followed this research, and it’s true of suddenly-disabled adults as well. After they adjust to their injuries, which seems to take two years’ time, they are as happy as anyone else. A healthy person will say that he would rather die than live life as a quadriplegic. But in life, people who become quadriplegics are like Christopher Reeve, not like the character in MILLION DOLLAR BABY.
The mistake we make is to experience our horror of disability, which I share, and our concern and care for their condition, which motivates those who wish to see Terri Schiavo’s feeding tube removed, as the emotion felt by the disabled person himself.
But ‘quality of life,’ like beauty, is in the eye of the beholder. The fact that we are horrified by the sight of Christopher Reeve does not mean that Christopher Reeve is horrified by the sight of Christopher Reeve. And it is Christopher Reeve’s opinion that counts.
The same can be said of my own life, as a matter of fact. When people realize I have two children with autism they react with horror. I would, too, in their shoes! But I myself am not horrified. I’m as happy as anyone I know, and happier than some. This strange life I lead, which I wouldn’t recommend to anyone else, is normal to me.
This is from Catherine Johnson's guest post at Kesher Talk. I immediately thought of this post when I read Charles Krauthammer's column this morning. Even more interesting is something Catherine says elsewhere - and I hope she won't mind my paraphrasing it here: That even severely disabled people, after that two-year adjustment period, consider themselves fortunate by comparison with people even more gravely incapacitated. Now think about that and read the quadriplegic Krauthammer's opening sentence in his column:
If I were in Terri Schiavo's condition, I would not want a feeding tube.
Krauthammer makes this assertion with absolute confidence - as many of us would - because, like almost all of us, he shares this wonderful basic trait of human nature. He has the ability to see his life as blessed. And so, with almost no use of his arms and legs, he can look on Terri Schiavo and say: "Wow ... she's really got it bad! I wouldn't want to live her life!"
But Krauthammer possesses two other beautiful human traits as well: humility and compassion. He knows that he is not Terri Schiavo, and he wants her to have what is best for her. And so he immediately continues:
... But Terri Schiavo does not have the means to make her intentions known. We do not know what she would have wanted. We have nothing to go on. No living will, no advance directives, no durable power of attorney.
And if you haven't yet, go read his full column.
What Charles Krauthammer and Catherine Johnson both understand is that, no matter how unbearable another person's life may look to us, it is only the person living that life who actually knows.