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comment by kleinbl00
kleinbl00  ·  1639 days ago  ·  link  ·    ·  parent  ·  post: Today on "Questions you'd never think would be asked"...

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.





_refugee_  ·  1639 days ago  ·  link  ·  

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.

kleinbl00  ·  1639 days ago  ·  link  ·  

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.