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comment by ghostoffuffle
ghostoffuffle  ·  1570 days ago  ·  link  ·    ·  parent  ·  post: Today on "Questions you'd never think would be asked"...

I'd like to respond to this, but I want to make sure I'm responding to your actual point and not my idea of your point.

Would you mind defining "disabled"? Is that a comprehensive term, or limited to severe disability? If latter, what do you consider severe?

Beyond that: are you saying categorically that disabled fetuses ought to be aborted? Or that you personally would choose to abort a disabled fetus every time? Or none of the above?

_refugee_  ·  1570 days ago  ·  link  ·  

I'm saying that if you find out you're going to have a disabled child and you think, "How will I take care of this child once it becomes an adult?" and then you think "Oh well I'll just make sure it stays a child," especially if this is followed up by any sort of thought similar to, "I'm so glad I'll be able to hold my child in my lap forever!" maybe you shouldn't have the child in the first place instead.

The point here is not about disability. The point is about parenting.

I find the idea of parents unilaterally altering their children in permanent and significant ways in order to make their job of parenting easier pretty revolting, and "but the child is severely disabled" really doesn't do much to change that opinion. When you add a serving of "Now I'll always be able to treat them like an infant," you've completely lost any ground you might have won with "but they're disabled!"

Definition of disabled? Up to the parent thinking these thoughts. I also accept adoption or other similar methods as options which qualify as "choosing not to have that child," for the squeamish.

ghostoffuffle  ·  1570 days ago  ·  link  ·  

Ah. Thanks for the clarification. I misread your statement

    I'd advocate for that way before I could get on board with making disabled kids permanent kids

As something along the lines of: "abort your disabled kid before you make her a permanent fixture upon this earth." Which, yikes. Clearly your viewpoint is more defensible than that.

Not quite sure how I fall either way. As somebody who spent years caring for adults with disabilities close to the standard set by this article, I can say that assistance in ADL's can be daunting (depending on the size of the adult and how willing they were to go along with it), but not impossible. Then again, I enjoyed the luxury of going home at the end of the day, taking a few days off, then coming back to them with a fresh mindset.

A little to your point, though- it's important to clarify the scope and limits of prenatal diagnostics. Of those available, the most specific tests- amnio, CVS, and increasingly blood tests- can determine the presence of certain disabilities (certain, not all), but can't test for the severity of the disability. So while it's easy to say, "test for x; if x, and if you can't deal with x, then push the red button," practice is muddied by shades of nuance. Also worth noting- amnio itself (and CVS even more so) comes with a distinct risk of fetal demise. So just making that decision in the first place, even if you're in the group at higher risk of gestating a kid with developmental issues, can be fraught. By the time you're 37 and you've already miscarried three times, just biting the bullet and getting an amnio might be a difficult proposition.

I suppose one might just see the positive test and ask: "am I capable of taking care of a child exhibiting the worst incarnation of this disability? If yes, proceed. If no, abort." But then you're playing with probabilities re. how disabled your child might be (dependent on condition, obvs); will your trisomy 21 kid enjoy near-total function and quality of life, or will he be at the way low end of the spectrum?

The other rub is that people often skew towards optimism when anticipating life with a disabled child, and only recognize the true difficulties when the rubber meets the road, long after the decision to abort is in the rearview.

Does this mean we should greenlight fucking with their endocrine function? No, I'm uncomfortable making that determination. I'm equally uncomfortable with the idea of rolling the die after an amnio, though, and basing my family's future (or lack thereof) on a gut feeling. Either way, as KB already said- it's not a decision I ever want to be faced with, and I empathize with folks on either side of the path.