Forgive me for the tags, couldn't find anymore more appropriate.
whaholy fuck Here's a really offensive idea, why don't you just have an amnio and if it comes back "your kid will be disabled" STOP HAVING THE KID ANYMORE OK, OK, that clearly won't solve for Example Kid #1, but still. I'd advocate for that way before I could get on board with making disabled kids permanent kids. I find this disgusting.
Known many? My mother had a friend whose son was mentally somewhere between nine months and a year. I remember visiting as a kid; my mother had informed me that she had a son and when I asked "how old" she tried to explain that he was much older than me, but acted much younger. The first time I saw him he was probably fifteen; I was probably six. My mom's friend had bruises from where the kid lashed out while she was trying to clean him. If I remember correctly he sent her to the hospital a few years later and she had to institutionalize him. There was a lovely Korean lady in my apartment complex. I'd see her when I used the hot tub; there were two showers down there and she'd bring her son in. He was probably 45, maybe a head and a half taller than her. And he was docile and always smiling, but every other day she'd have to hold his hand and haul him down the stairs, then strip him down to his underwear, then scrub him down with a washcloth in the spa shower because hers wasn't big enough. It's easy to sit there judgmentally and say "you should have thought of that before you got pregnant" but it isn't as easy as all that. Cerebral palsy is often caused by damage during birth. If the baby is starved for oxygen while it's coming out the effects can be catastrophic. It's also easy to decry the mistakes made by others when you're spitting down from the lofty perch of a major east coast metropolis. Ever been to Cloudcroft? I have. It looks like this. I knew a girl with an autoimmune disorder who had her lenses removed by doctors in Cloudcroft when she was eight because... vision problems? She's been legally blind ever since, and with 10 diopter contacts and 10 diopter glasses she can almost see well enough to drive during the day. For my own part, I was forced to sit in a booth at a dermatologist's conference in Santa Fe like a zoo animal so that dozens of doctors from all around the Four Corners area could fail to diagnose my eczema as a kid. Come to Seattle, 10-minute office visit, steroid cream, sorted. I had to have eight fingernails fall off first, though. Kinda like the canker sores I grew up thinking were herpes sores, and which I had to treat with a bamboo skewer wrapped in cotton and dipped in battery acid. Fuckin' Zilactin is my jesus. Know how nobody wants to have an abortion? How it's the least-worst outcome in many cases? This is like that: you're dealing with families that are actively considering miniaturizing their children so that they can continue to care for them. However they got there, it's safe to say they have more regrets for their situation than you do. I don't know what I'd do, but I'm glad I don't have to figure it out. Friends of ours just buried their adopted son last week. Down's, some other congenital stuff. Died of organ failure six months after completing his associate's degree in auto repair (a task that took him six years). That dude was high-functioning and he was still 95% of their life. "Questions you'd never think would be asked" is more like "questions you're glad you don't have to ask." It's super-easy to argue common decency and all-caps judgmental instruction but it's worth trying that skin on just to be glad you don't wear it. No one ever thinks about the level of tragedy you have in your life if you actually need a late-term abortion. They only think about what a horrible monster you must be to consider it.
I'm not saying "maybe you should have thought of that before you got pregnant" and clearly, my statements can't be applied to disabilities incurred during childbirth or early childhood and etc. I'm saying that if you find out you're pregnant and then find out your kid is going to be seriously unable to care for itself in any way throughout its entire life, while still pregnant, I don't think your first choice should be to decide to keep the kid a kid forever. (Yes - the article doesn't say that it should be your first choice, either. But I think maybe if you're pregnant with a kid you know you won't be able to take care of, maybe you shouldn't have that kid. It's terribly armchair-view of me, I know. People have all sorts of feelings about having children, I know. Silly me for caring about those a lot less. My position, of course, doesn't apply to all children with disabilities or even all cases covered by or discussed in the article. Sue me for not covering all bases.) Sure, parents make controversial decisions about what they want their families to look like all the time. Sure, it's really easy to have emotions about it from an armchair. Sure, we're all glad we don't have to make these choices or have these thoughts. Sure, I can say "Never ever ever" all I want and it doesn't mean I actually would "never ever ever" if I was in that situation and everyone can point that out and agree with it until we are blue in the face. Sure, what the article talks about should only be a last-case resort. Sure, it's easy to decry the mistakes of others. So what? Sure, we could argue about how much choice a disabled child has in their life at all even before their parents unilaterally decide to permanently alter their bodies in truly significant ways so why does it matter they don't have any choice in that, either? I don't care. I'm still disgusted.
Your visceral reaction still comes from a place of "there must be a better solution than this" while the article profiles people whose lives have revolved around a solution-space where "this" has become their best option. I can only speak for myself, and for myself, I had our daughter tested for genetic anomalies before we knew she was our daughter. I was deeply worried. Those tests aren't cheap, though, and they aren't covered by insurance. And lots of people still don't have insurance. And lots of people are less prepared to have a kid than you should be to shop for a car and babies happen anyway. Tragedy is often the intersection between naïveté and inexperience. Still, it unfolds. So what? So flippancy is the act of granting yourself permission for inattention. Be disgusted. That is, after all, the point of the article. But at the same time, the article also highlights a situation in which there are no good choices, and those frontiers are often the vanguard of civil society. When we pretend the hard stuff is easy we surrender choice to the slick instead of the thoughtful. Build a wall. Mexico will pay for it.
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?
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.
Ah. Thanks for the clarification. I misread your statement 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.I'd advocate for that way before I could get on board with making disabled kids permanent kids