Response to an interesting column by Carol Kennedy

I just read an interesting column (linked above) linked off of Please read it first, if you haven’t already. It’s got some good points about human dignity and disability, but she still speaks from the “outside,” as it were. My response follows.

That was a very good column–and, referring to the people you said you’d agree with 99% of the time, make that 99.5% in my case.
You raise some very good points. However, as someone *with* a genetic disorder (and with at least one child who has inherited with it), I must disagree with your words regarding labelling. I do not believe it demeans me, or I demean myself, by identifying me as a “person with Marfan syndrome.” You mentioned deaf people in your article. Deaf people have a “deaf culture,” and often prefer to associate with other deaf people, precisely because they understand each other.
I often have trouble with the idea that all illness and “defects” in nature result form original sin–both a scientific problem and a moral one. It is a short-cut to the problem of evil that seems to undercut God’s power and Providence. I believe that God gave me Marfan syndrome, and I thank Him for it. I see the good in my condition, and I accept it for what it is.
You are right–children can hear and understand the things adults say around them. When I was about 4 or 5 years old, I demanded that my parents give me the straight talk and straight facts on my condition. “It’s my life,” I said. “It should be my decision.” I was old enough to realize that I wasn’t as strong, or fast, or capable as other kids. I was old enough to realize that not every kid went to the hospital every six months or so.
When people hear about disabilities, they think of saying things like, “That person has Down’s syndrome,” and then label the mental capacity. And, you’re right, the falsely “nice” mentality will either a) condescendingly talk about acceptance or b) have a false optimism that the person *can* overcome the physical impediment. It’s like the thing in “Steel Magnolias” about “the doctors said Shelby can’t have a baby.” My greatest fear for my own daughter is putting up with people who will tell her she should just “try” to play basketball, or run a race, or whatever. . . .
Each of us must learn to accept our indiviudal limitations, whatever they may be. As parents, we have to accept our children’s limitations–while still encouraging them to try, anyway.
Do not dismiss the sentiment of those who admire the simple faith and pure spirituality of those who are mentally challenged (for whatever reason). It *is* the childlike faith that Jesus calls for, and I believe that God allows those disabilities to set an example for the rest of us.
And I proudly identify myself as a Marfan. It does define who I am, in terms of this earth. I cannot choose to be otherwise. Calling it by any other name-or no name at all–will not alter the reality of what I have to face, day in and day out. Nothing I choose to say, or do, or ignore, or label, will change that. I live every day knowing it may be my last. Not everyone has that privilege. I do. And I appreciate it as a gift of God.

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