OK, breathing…when the words don’t come easily, I make a list:
1. I have compassion for what this lady and her family are experiencing. Great compassion. And I don’t blame her for feeling the way she does, or for thinking the thoughts she thinks. It’s understandable, and I can’t guarantee I’d feel differently were I in the same place. It is not fair that so much suffering could come to one so small, or that his family should have to watch him die. It’s terrible.
2. Scientifically and morally speaking, I don’t think abortion is the answer to Tay Sachs. I think genetic screening BEFORE pregnancy takes place is. Financially, this is implausible for most at this point. Insurance companies should be encouraged to allow couples genetic screening BEFORE they become pregnant. This could save a lot of lives and a lot of grief, even if it costs money.
3. While I appreciate where this woman’s passion comes from, I feel that politicizing her son’s lingering death in this particular way is distasteful, disrespectful, morally wrong, and futile. No minds will be changed by this piece, but lives are being devalued.
4. Ableism. While it might be rhetorically handy to split apart severe, life-ending disability like Tay Sachs and treat it as totally different from the kind of disability people live with and cope with, it is really impossible. Disability exists on a continuum, and if we start devaluing life on the far end of that continuum, where does it stop? I generally hate slippery slope arguments, but in this case, since there is no clear line of demarcation and society already devalues disabled people, it is a legitimate concern. And already in the comments, people are suggesting euthanasia. Again, where does that stop? In the Netherlands, the line has kept moving. It started out seeming reasonable enough, but it has escalated over time. Now they won’t revive very premature babies. Next doctor-assisted suicide is suggested to old people “tired of life.” There starts to exist an “obligation to die” when you are costing your family and the medical system too much money and bother. People have recently been euthanized for having, of all things, suicidal depression that was treatment-resistant. I think that’s preposterous, and not a social engineering road I want to go down—both as a Catholic, and as a disabled person myself!
Deciding whose life is worth living is not a job I want. It’s not a job any human should get to have.
And again, while this piece evokes a lot of emotion from both “sides,” will it change Rick Santorum’s mind or anyone else’s? I highly doubt it.
Thank you for dealing with the situation in such a nuanced way. I wish more people would look at the complexity.