Dear Retardation,
I hope this letter finds you well. I am living on the West Coast now, but rest assured I haven’t forgotten about you. In fact I have, of late, been thinking about you quite a bit. The last 36 hours, especially, have been pretty intense, which is why I thought it might be a good time to reach out. I have gotten myself involved in an upcoming study in the north of this state, a new clinical study, and I will be meeting other families you perhaps know. I may even become a test subject. There are many things changing as you know, and I feel even now that acceleration beneath me, reconfiguring the dynamics of days and decisions. I realize now that this is why I came here to the West Coast; I’m not sure I knew it at the time, though.
These things I thought — that there might soon be a way to reverse Fragile X, that Fragile X might offer a window to decoding autism — these things certainly appear to be in the realm of the very plausible, and soon. And so I must turn to you to ask these questions again, these important questions:
If The Boy is — well can we go ahead and call it cured? — if he is that, what does that mean? Does he cease to be him? Does it turn out that, in being pulled from his perpetual childhood, he becomes someone else? Someone with different wiring, different thoughts and perceptions? These treatments might just change everything in a person that defines the self, so what then? And what about the rest of us? I became who I am because of him, and I attribute any decency and compassion I have to him. This life I’ve led, with its accompanying perceptions, all filtered through a life shared with him. If this changes, does that life end? Does a new one begin? Can I say, I mean is it even in my right to say, that I am a bit afraid of what it might mean for him to step out of the dark side of his own head? Or is it that he’ll be stepping into the dark side, our side, a bleak place of accountability and socially appropriate behavior? As a family, we’d be so … so … typical. Surely there’s some insight you can share with
Yr friend, BR
***
Dear Sir:
Apologies on the delay in responding to your letter. As we have no actual address for Retardation, your missive unfortunately circulated amongst our departments for lo this longish period before arriving here. (Incidentally in future our recommendation is that further correspondence be posted to us here directly.) Nevertheless we hope this response comes in time to answer some questions.
To address your points let us back up a bit and say first this: Nature is Fair. There is no preferential treatment doled out to even the cutest or pluckiest organism. Life tries things out, via natural selection or mutation, and some things stick, and some don’t. But there is no base purpose, no ulterior motive, behind these decisions, except that life keep perpetuating itself. This may be difficult to understand if you subscribe to certain religious beliefs, but we assure you that it is possible to reconcile the basic and complex functioning of nature with a deity figure — if, of course, you are so inclined. (We make no recommendations either way, other than to suggest that, given what we know of religion, Fairness is a pretty good principle for a God.)
Consider this example: Many people of African descent suffer from the wasting and terminal disease sickle cell anemia. This condition results from the pairing of two recessive genes from the parents, meaning both recessives have to be present for the disease to manifest. But this gene is not nefarious. For if only a single recessive gene is paired with a dominant one, the person has an increased immunity to malaria, which as you can imagine is a useful genetic trait in Africa.
Fragile X is a mutation, as you know, and doesn’t appear to serve any survival or reproductive purpose. In fact normally natural selection would remove the most severely affected individuals from the gene pool (though carriers could always pass it on to a later generation), but because of the intense bonds of human society, you find yourself in the unique position of building a life with a person outside the spectrum of typical selective practices. Add to that the fact that now humans affect every major biological process, from the most basic chemical reaction to the creation of new life on the planet. Fragile X and autism are included under this umbrella as well, and so however this shall we say drama plays itself out, it will be a new development for human civilization — the correction of a mutation.
This addresses your question, because mutation is of course one way that Life pushes itself forward, through its own experiments (whether these are directed by a consciousness or random chance is related to abovementioned theological considerations). Without mutation Life would stagnate. So by taking control of these kinds of “experiments,” humans are taking their biological destiny into their own hands in a more fundamental way than ever before. So your brother may in fact be an endangered species, an unnecessary model that, like sickle cell and practically any other undesirable condition (from fetal abnormalities to death itself), could soon be taken out of the genetic mix. While we cannot say what he might be like after a treatment is developed, we can say this makes your shared life with him unique — a momentary window opened in human history, a relationship that social circumstances would have rendered unlikely in the past and that scientific development will render impossible in the future.
Any value or meaning drawn from this is, of course, entirely yours to determine.
Human society is concerned with more than just survival and reproduction, naturally, and decisions about directing the flow of Life will affect every single person, so your questions are commoner than you might expect. We have, incidentally, been receiving many letters similar to yours, and so if this response reads rather like a form letter, that’s because large parts of it are from a template. But then this model has worked splendidly for the transmission of genes, for the perpetuation of Life itself, so we humbly ask for a quantum of understanding in your future dealings with this office.
Sincerely,
Steve
Comptroller, Office of Evolutionary Affairs
Oct 13th, 2009 12:36pm
