Living with microcephaly
February 5, 2016 9:42 AM   Subscribe

Gwen Hartley's two daughters, now 9 and 14, were born with severe microcephaly. In the United States, microcephaly isn't unheard of but relatively rare with an estimated 25,000 diagnoses per year. But with many of us unfamiliar with the risks associated with the Zika virus, the Hartleys' blog gives a valuable look at how this plays out in a middle-class family in the American Midwest. posted by witchen (37 comments total) 11 users marked this as a favorite
 
One of the guys on our store's custodial crew is microcephalic. He's a nice guy.
posted by jonmc at 10:04 AM on February 5, 2016 [3 favorites]


“They called it a ‘terrible’ birth defect,” Hartley said. “I don’t look at them as having terrible birth defects. I look at them as gorgeous. To me that is not a horrible, hideous birth defect. It’s no less beautiful to me.”

That people would look at her children and say, “Let’s never let this happen to anyone ever again,” is a “little bit hurtful,” she said.


Man, I don't know. It's great that these girls have a family that loves and supports them so much, but like... yeah, let's never let this happen to anyone ever again. This isn't a 'what a wonderful tapestry of humanity' thing - their quality of life is going to be way lower than that of people without microcephaly, forever.
posted by showbiz_liz at 10:05 AM on February 5, 2016 [62 favorites]


I wish stories like this would address the issue of whether the parents have been financially ruined by all of this and if not, how they avoided it.
posted by Mitrovarr at 10:09 AM on February 5, 2016 [20 favorites]


I guess one thing that immediately strikes me about all of her "I look at them as gorgeous. To me that is not a horrible, hideous birth defect. It’s no less beautiful to me.” schtick is that the article frames the birth of their second child as a way to "complete her storybooklife." Then the girl is born with microcephaly and they eventually find themselves feeling "ready to get pregnant again." Could be that im reading too much into it but i dont blame her for keeping up the "they're beautiful and no less happy than a child born without microcephaly," but i dont realy believe it.
posted by Exceptional_Hubris at 10:13 AM on February 5, 2016 [7 favorites]


This isn't a 'what a wonderful tapestry of humanity' thing - their quality of life is going to be way lower than that of people without microcephaly, forever.

This is the kind of thing where there are tradeoffs between having a realistic understanding of something, and allowing people to take comfort in their own stories. I mean, what use is it to that mom to go out of her way to realize that her daughters were born into this terrible condition, and that there is just no upside at all? Her situation sucks, and she's entitled to any comforting delusion she can make herself believe.

What the rest of us should do is just sort of tacitly understand that of course, my God, if we could cure or prevent things like microcephaly that would be amazing, but meanwhile declare it our official position that people with microcephaly are just part of the rich diversity of life, and their lives are just as, etc., etc. As long as you realize that understanding things and talking to other people are two different activities, there's no problem.
posted by officer_fred at 10:17 AM on February 5, 2016 [28 favorites]


I guess one thing that immediately strikes me about all of her "I look at them as gorgeous. To me that is not a horrible, hideous birth defect. It’s no less beautiful to me.” schtick is that the article frames the birth of their second child as a way to "complete her storybooklife." Then the girl is born with microcephaly and they eventually find themselves feeling "ready to get pregnant again." Could be that im reading too much into it but i dont blame her for keeping up the "they're beautiful and no less happy than a child born without microcephaly," but i dont realy believe it.

Well she totes believes that people are chosen to have intensely disabled children.

6th paragraph down.
posted by asockpuppet at 10:19 AM on February 5, 2016


Yeah, I mean. I'm not being sarcastic when I say good for her for maintaining a positive attitude. But a chirpy first world mommy blog isn't maybe the most realistic or readily generalizable portrayal of how this sort of thing plays out, particularly at a community wide level. Her daughters, apparently, are going to require a lifetime of 24/7 care. And I assume that a not-insignificant subset of the microcephalic babies being born now will as well.

Even assuming that she is 100% on board with the attitude she's conveying, not everyone has access to the resources she does, and it's naive to assume that it'll all work out for them somehow.

This is a problem that needs to be addressed realistically, right now. Especially since the Zika virus is currently targeting some areas where women have little if any access to safe, legal reproductive healthcare.

I don't know this blogger and I really don't want to speculate about her motivations or anything, but I do think that people like this are often exploited by anti-choice types, almost as though they're daring people to say to parents' faces that you think their specific child should have been aborted. I am not saying that, BTW, but I will say that it's time right now right this very minute to push for safe, legal abortions and birth control, most urgently in areas affected the most by Zika.
posted by ernielundquist at 10:23 AM on February 5, 2016 [52 favorites]


Whatever she needs to tell herself to stay sane, I guess (and I can't blame her in the slightest), but an awful lot of the statements have an undertone of defensiveness. How dare someone look at the extremely difficult circumstances her family is in and use that to motivate containment of Zika?!

And then I was going to say what ernielundquist wrote, but less eloquently.
posted by supercres at 10:28 AM on February 5, 2016 [3 favorites]


It can be hard to find the right place to stand between "This child is absolutely worth loving and supporting and should never be seen as any kind of mistake, but as a person," and "but I still want medical science to take us to a place where a child like her would not have to go through this suffering and limitation of her prospects, but be born with a fully functional body."

It's easy, especially in reproductive/economic discussions, to cross over into making disabled folks (or their families) feel like they're being used as Don't Let This Happen to You signs. Even if medical science allows us to stamp out microcephaly or other birth defects, there is still injury and disease out there that can strike, or rare disorders that can't be caught. There will always be some families facing this kind of struggle. They deserve our respect and support.

The main problem I have with this story is not anything in the mother's attitude but in the knowledge that as a society, we hold people like her up as beacons but let anyone with fewer resources fall through the cracks.
posted by emjaybee at 10:33 AM on February 5, 2016 [66 favorites]


Even assuming that she is 100% on board with the attitude she's conveying, not everyone has access to the resources she does, and it's naive to assume that it'll all work out for them somehow.

The main problem I have with this story is not anything in the mother's attitude but in the knowledge that as a society, we hold people like her up as beacons but let anyone with fewer resources fall through the cracks.


I really agree with both of these points; I think there's enormous pressure on people, especially women, who have kids with various levels of challenge to talk about how AMAZING their kids are and how BLESSED they feel. If parents actually feel that way, GREAT! I'm really glad! That's a difficult circumstance working out okay for everyone! But there's also a lot of PRESSURE to say this, and it means we don't want to hear mothers (or fathers, or siblings) talking about how it's REALLY HARD and can even be, maybe, disappointing, to have a child who won't be able to have the life you imagined for them.

However this woman feels, fine, that's awesome, but I really don't like the perpetuation of the narrative about the person who's so glad she's got disabled kids and the way it positions anyone who asks for help or is less than overjoyed as ungrateful or a bad parent. Caring for kids with special needs can be fucking hard and we should make sure parents/caregivers feel like they're allowed to express that if it's how they feel. I think the focus on people like this woman (my issue is with the focus, not her) make that difficult for people who lack her resources and perspective and are maybe feeling sad and tired and disappointed and stuck.
posted by Mrs. Pterodactyl at 10:58 AM on February 5, 2016 [22 favorites]


My daughter's autistic, and I love her, and I'm glad she's in our life. But, if I could press a button and she'd be neurotypical, all other things being equal, I would. And I wouldn't wish anyone else to have an autistic kid.

(As far as I can tell, autism exists for the same reason sickle cell anemia exists: the genes are adaptive for the group as a whole. If you have a teaspoonful of autism spectrum, you're Bill Gates. If you have a tablespoon, you're Temple Grandin. If you have a pint, you can't be in a crowd and maybe you can't talk. If you have one sickle cell gene, you have a defense against malaria; two, and you have a serious problem.)

When you're a parent of a genetically disabled kid, you have to throw out all your old hopes and dreams for your kid, and grow new ones. That's hard. But it's a long way from there to "it's so wonderful that some people are born with severe genetic problems!" Microcephaly, Down's Syndrome and almost all autism are severe genetic problems. I don't see an upside to them. If we can eliminate them, or fix them, we should.
posted by musofire at 11:01 AM on February 5, 2016 [43 favorites]


There's a difference between a child who would have been born with microcephaly regardless, and one who is only born with it due to a disease like Zika. The first may not be possible to prevent, but we should absolutely do everything in our power towards prevention efforts for children in the second category. It isn't saying that people in the first category don't deserve to exist, to say that people in the second category should be given a chance to live without the devastating effects of the condition.
posted by decathexis at 11:08 AM on February 5, 2016 [1 favorite]


The main problem I have with this story is not anything in the mother's attitude but in the knowledge that as a society, we hold people like her up as beacons but let anyone with fewer resources fall through the cracks.

So so much. The other line that is often used in these discussions, "my disabled kid is the greatest teacher--I've learned so much/become a better person," is so glib and selfish it can't possibly outweigh the real suffering incurred by the kids themselves, the parents, and especially their siblings.

Re: Zika in Brazil and elsewhere: I have real questions about the ability (or teachability? if we're framing this as an "opportunity") of families and communities in poverty to live with this. Even if the kids don't get the medical care they need, they probably can't be left at home alone, so that takes a parent away from work, but they still have to eat and survive. This could be really catastrophic. We need to figure something out, quickly.
posted by witchen at 11:09 AM on February 5, 2016 [7 favorites]


Her actual advice to other people with microcephalics:

“I’m sad they have to go through this, but they have it, so you can optimize the heck out of that kid’s life,” Hartley said of other parents whose babies have microcephaly.
posted by asockpuppet at 11:13 AM on February 5, 2016 [3 favorites]


Does 25,000 per year seem not rare to anyone else? That's about half a percent of all U.S. annual births. About 6,000 people are born with Down Syndrome each year in the U.S.
posted by cichlid ceilidh at 11:20 AM on February 5, 2016 [5 favorites]


I suspect people living in poverty will probably mostly fall back to the, uh, traditional solution to unsupportable children. Just another reason we need to make sure they have access to contraception.
posted by Mitrovarr at 11:31 AM on February 5, 2016 [2 favorites]


It was really interesting to me that with her first daughter, the doctor did one sonogram at 19 weeks and then never again. From what I understand, many fatal diseases or disabilities don't show up until after the 20 week sonogram anyway. I feel especially for their son, who had no choice in the matter. Obviously, none of us get to choose our families, but his parents chose a hard road for him.
posted by roomthreeseventeen at 11:55 AM on February 5, 2016


"It was really interesting to me that with her first daughter, the doctor did one sonogram at 19 weeks and then never again. From what I understand, many fatal diseases or disabilities don't show up until after the 20 week sonogram anyway."

Pretty standard to do a dating sonogram around 8 weeks, an anatomical sonogram around 20 weeks, and a positioning sonogram near delivery (38ish weeks -- at which point there's a lot of the anatomy you CAN'T see because the whole thing is conducted in EXTREME CLOSE UP basically, they're just checking if baby is head-down). They don't typically do more of them unless they have a reason to be suspicious.

You can ask them for more sonograms, but generally both your insurance and your doctor will say no, and the mall-storefront sonogram places that you used to see have mostly been shut down for violating various standards of care.
posted by Eyebrows McGee at 12:06 PM on February 5, 2016


cichlid ceilidh - after looking around, 25,000 seems to come from this paper. but i've also seen 1 in 10,000 births (att to U of Ulster 2003 study). about 4 million children were born in the usa in 2014, so the 1 in 10,000 figure would give 400 cases. that does seem to be a large discrepancy. i suspect it may be that the first source is using a simple statistical definition (heads smaller than 2SD - which isn't that unusual) while the ulster paper could have more stringent criteria.
posted by andrewcooke at 12:15 PM on February 5, 2016 [1 favorite]


The main problem I have with this story is not anything in the mother's attitude but in the knowledge that as a society, we hold people like her up as beacons but let anyone with fewer resources fall through the cracks.

My family is struggling to figure out how to support my niece, who is only mildly intellectually disabled - and this is in "socialist" Canada, where at least her medical care is all covered.

She is only mildly disabled - she can (obviously) walk and talk and read - but (at 17) her schoolwork is still at the elementary level and she can't cook her own meals (though she does do laundry). She doesn't like riding the bus to places she hasn't been before, or alone at night anywhere, so she often has to be accompanied when she travels (to my house, to her youth group).

My niece is delightful. She's fun and loving - and attitude-wise, she's way less trouble than the average teenager. But she still needs the kind of parenting an 8 or 10 year old needs, and who knows for how long -- and that burden has fallen heavily on my mother (as her legal guardian) who is a single parent of limited means. Government services are very hard to access; the forms even confuse me, and I have a masters degree.

My niece will always be poor, always dependent on someone (family, government) for her income, always need support in handling the more complex areas of her life (bills, rent, etc). She will never be fully independent. She has trouble making friends -- most intellectually disabled teens are much more disabled than she is, but she doesn't connect with non-disabled teens.

None of this means her life isn't worth living -- but it does mean that it is harder for her family, and if we could wave a magic wand and make her average intelligence, both her quality of life and theirs would likely be much better.

It's not anti-disabled to recognise this.
posted by jb at 12:16 PM on February 5, 2016 [30 favorites]


Our son has Down syndrome. I like to delude myself that he will be highly functioning, but I don't know for sure yet, as he's 7 months old. What I do know is that he hates being ignored, loves to try to stand, and thinks playing Superman is the greatest thing ever. I'm not going to say that when we heard the diagnosis at birth, I wasn't completely terrified, cuz, Jeebus. And I fully support research efforts to prevent DS. But I can see that he's his own person now. He may always live with us, but that doesn't bother me anymore :)
posted by triage_lazarus at 12:29 PM on February 5, 2016 [19 favorites]


One ultrasound at around 20w is the standard of care in American obstetrics. Some practices do another one closer to term but it's not really a diagnostic tool, merely confirming whether the fetus is presenting correctly for labor. If other things come up (abnormal fundal height, health complications for the mother, fetus in distress, etc) then that will be investigated but a good anatomy scan generally means things are fine with the development of the fetus.

There is absolutely nothing unusual about her pre-natal care.
posted by lydhre at 12:35 PM on February 5, 2016 [1 favorite]


My daughter's autistic, and I love her, and I'm glad she's in our life. But, if I could press a button and she'd be neurotypical, all other things being equal, I would. And I wouldn't wish anyone else to have an autistic kid.

I can understand where you're coming from, but statements like this are profoundly offensive to autistic adults, who are right here in the room with you. I'm glad I was born even if you aren't. It may make my life much more difficult at times, but it's still a part of who I am. I wouldn't change that even if I could.
posted by dialetheia at 1:40 PM on February 5, 2016 [13 favorites]


My daughter's autistic, and I love her, and I'm glad she's in our life. But, if I could press a button and she'd be neurotypical, all other things being equal, I would. And I wouldn't wish anyone else to have an autistic kid.

FYI, many autistic adults are glad to be autistic and consider this attitude to be eugenics. Neurotypicals may not be able to wrap their minds around the concept that it's possible to be autistic and to live a good life, but it's true.
posted by Lexica at 1:41 PM on February 5, 2016 [9 favorites]


it's time right now right this very minute to push for safe, legal abortions and birth control, most urgently in areas affected the most by Zika.

Even where abortion is safe and legal, it needs to be available past the first trimester in the case of microcephaly:

How is microcephaly diagnosed prenatally?
Microcephaly can be diagnosed during pregnancy with ultrasound. Microcephaly is most easily diagnosed by ultrasound late in the second trimester or early third trimester of pregnancy.

How early can microcephaly be diagnosed during pregnancy?
Microcephaly might be detected as early as 18-20 weeks of gestation however, detection by prenatal ultrasound can be challenging at this gestational age due to fetal position and fetal motion artifact.

posted by blue suede stockings at 2:45 PM on February 5, 2016 [1 favorite]


The cynicism and cold calculations here are scaring me. It's bad even for metafilter standards. Maybe these lives aren't worth anything to you, but I don't doubt for a second the love and cherishing she feels for her kids.
posted by St. Peepsburg at 5:35 PM on February 5, 2016 [4 favorites]


FYI, many autistic adults are glad to be autistic and consider this attitude to be eugenics. Neurotypicals may not be able to wrap their minds around the concept that it's possible to be autistic and to live a good life, but it's true.

While this is true for some, autism is often comorbid with very unpleasant conditions like epilepsy and severe anxiety disorders. Also, the further along the spectrum, the more likely these other conditions stack up in ways that can make life extremely difficult. I don't think it's fair to describe as 'eugenic' the desire to mitigate conditions that can cause tremendous suffering for those born with them. For example, Fragile X Syndrome is likely one of the most common causes of ASDs. Should we abandon the simple genetic screening available for what often means living with profound intellectual disabilities, epilepsy and social anxiety, because it would be 'eugenics' to not just roll the dice?

Lots of people with bipolar disorder consider it an essential part of who they are. If I didn't have it, well, for all purposes I wouldn't exist. There would be someone else in place of me. Yet despite this, and despite bipolar people contributing to neurodiversity, would I wish it all away if I could? 20% of people diagnosed with BD will commit suicide. Lots of those people who kill themselves refuse to be medicated because it 'takes away who they are'. Is it 'eugenics' to use genetic testing because you don't want to bury your child, and too many family members have taken their own lives already?
posted by [expletive deleted] at 6:21 PM on February 5, 2016 [15 favorites]


The cynicism and cold calculations here are scaring me. It's bad even for metafilter standards. Maybe these lives aren't worth anything to you, but I don't doubt for a second the love and cherishing she feels for her kids.

I don't doubt it either. Doesn't mean this condition isn't tragic. Is it really "cynical and cold" to say "I wish fewer kids would be born with a crippling disease"?
posted by showbiz_liz at 6:33 PM on February 5, 2016 [7 favorites]


I mean the early comments basically calling her a deluded person, using a shtick to get by, she's lying to herself etc etc. it's just.... waaay too dissecting.
posted by St. Peepsburg at 6:58 PM on February 5, 2016 [4 favorites]


Lots of people with bipolar disorder consider it an essential part of who they are. If I didn't have it, well, for all purposes I wouldn't exist. There would be someone else in place of me. Yet despite this, and despite bipolar people contributing to neurodiversity, would I wish it all away if I could? 20% of people diagnosed with BD will commit suicide. Lots of those people who kill themselves refuse to be medicated because it 'takes away who they are'. Is it 'eugenics' to use genetic testing because you don't want to bury your child, and too many family members have taken their own lives already?

Speaking as someone with autism and a mood disorder: this might be a fair comparison if the voices of parents and caretakers of those with mood disorders were routinely valued over the voices of the people with the disorders themselves, if every conversation about bipolar was dominated by non-bipolar parents who have it so hard and centering the search for a genetic cure before any accommodations, if there were routinely news stories about parents murdering their children and blaming it on the mood disorder, if people said things like "well, a little bit of bipolar might make you Stephen Fry, but severe bipolar? Who could put up with that?" Whatever the challenges of raising a child with these disabilities are, it's dehumanizing and degrading to constantly hear these attitudes. I am not opposed to genetic testing. I am opposed to being told that you wish you could push a button and delete people like me from existence.

I don't have just a little bit of autism; I am autistic. it made my life hell at points, particularly in childhood, and I firmly believe that the thing that made my life such hell was not the neurodevelopmental difference itself but people's inability to treat me as fully human, their assumption that because my brain didn't work like theirs I couldn't hear or understand it when they insulted or mistreated me, being called a "retard" day after day, being told "you need to learn to act like the other children or else." Until recently, people assumed that severely autistic children couldn't feel pain because they don't express their feelings the same way; you can imagine how that affected their treatment. This is the environment in which the above attitudes occur. This is our history. You can't take eugenics out of the implications, however much you might wish to.

I do not want to make this thread about me or about autism, so this will be my last comment. But I will leave you with what I wish I could say to all those people when I was a child: we are here. We can hear you. Our lives have value, just as we are.
posted by thetortoise at 7:27 PM on February 5, 2016 [17 favorites]


it means we don't want to hear mothers (or fathers, or siblings) talking about how it's REALLY HARD and can even be, maybe, disappointing, to have a child who won't be able to have the life you imagined for them.


Calvin's Story is a blog that, I think, does a good job of talking about both the utter love a mother feels for her severely disabled child and the tremendous frustration and sadness that caregiving for him can sometimes bring. I get the impression she takes some flak from time to time for daring to speak about the second at all. It's as if the world will end if someone admits that having to change an eight-year-old's diapers while he flails and shrieks is challenging and unpleasant to think about doing for the rest of his life. I guess it would force us to confront how much help caregivers for the severely disabled need--and aren't getting.
posted by praemunire at 7:40 PM on February 5, 2016 [8 favorites]


I don't think it's fair to assume that someone with a disability is necessarily suffering more than a "typical" (whatever that means) person. All kinds of people with all kinds of bodies and abilities experience enjoyment, and suffering.

If you don't think people should make disabled people because it's selfish to bring people into the world to suffer, well, you're making a very broad anti-natalist argument -- suffering is the human universal.
posted by internet fraud detective squad, station number 9 at 8:29 PM on February 5, 2016 [8 favorites]


As I've mentioned elsewhere on Metafilter, I have severe type 1 bipolar disorder, ultra-rapid cycling (every three hours). One standout psychotic episode reached as high as hallucination in four senses (all but taste) - you haven't lived until you've hallucinated the fecal smell of your intestines being punctured when the demons flying out of the wall slowly disembowel you.

It's pretty well-controlled now, say 95-98% of the time - Lamictal isn't just a nigh-complete cure for me, but also every single other similarly afflicted person in my family. That fact, and the fact that bipolar disorder made me who I am and that who I am is now, finally somebody I like and respect doesn't in any way change that I would give almost anything to not have it. Even now, the remaining 2-5% and residual emotional detachment/over-suppression habit results in too much heartache for the people I love.

Before I found Lamictal, children were absolutely out of the question. Even a 33% chance of forcing somebody to live with this would be about the least ethical thing I can think of - like if I killed a random stranger in a manic outburst at least it would be over pretty quick for them instead of drawn-out decades of turmoil and anguish for both my child and everyone who cared about them. Now, having found an easy treatment that really works for my entire genetic line (I am by far the most severe case, my 2-5% is everybody else's less than 1%), I'm seriously considering having children and a family of my own for the first time in my life. Modern medicine found the precise chemical we were missing.

I was raised by a large German-American clan who came to America having been children in Hitler's Germany. They dealt with that trauma by raising their children and many grandchildren with a firm, passionate resolve that we understand and actively oppose the evils of fascism, anti-Semitism, and all that Hitler stood for. Explanations of how to spot authoritarianism began at five, documentaries of concentration camps came at eight. There are no words strong enough to describe how utterly offensive I find accusations of eugenics because I possess the basic human decency to not risk forcing other people into this internal horror show. To paint the fundamental parental imperative to provide your children with a life free of this torment using the same brush as the ubermensch programs is just disgusting.
posted by Ryvar at 9:43 PM on February 5, 2016 [33 favorites]


While this is true for some, autism is often comorbid with very unpleasant conditions like epilepsy

As an epileptic, this statement is filling me with hulk rage. I'm going to try to be coherent and polite.

I have epilepsy and two children. To start, this means I had two high risk pregnancies and two high risk births, including a seizure after 36 hours of labor. The choice to get pregnant wasn't, and couldn't, be taken lightly. While other friends start trying to conceive at the drop of a hat, I had to plan an entire year in advance to get medication managed, bloodwork done to check optimal baby growing conditions, and a six week course of Vitamin D on top of prescription folic acid several times what is generally recommended for low risk pregnancies. It could probably go without saying that my medication put my fetuses at higher risk of some birth defects, but I'm saying it anyway.

I had access to genetic counseling to discuss the odds of my children developing disorders beyond just possibly inheriting my seizures. Being pregnant meant staring "What would it be like to have a disabled child?" straight in the face while doing my best to prevent it. I had conversations about what circumstances I would terminate a pregnancy under, and for me, I concluded that I would only terminate for defects deemed "incompatible with life."

I made this decision because my life is fucking worth living.

My. Epileptic. Life. Is. Worth. Living.

Even if my kids had "unpleasant" seizures, their lives would be worth living. Even if they were autistic, their lives would be worth living. Even if they had Down Syndrome, their lives would be worth living. And so on. I made the choices to try and prevent health problems as best I could not because I thought of a disabled child as "less than," but because it was the first thing I could do as a parent to do my absolute best to care for my children. I had genetic screening not so I could terminate a disordered fetus, but so I would have as much information and support as I could get to help a disabled baby if need be. Accepting disabled children and trying to screen for potential disabilities in pregnancy are by no means incompatible.

My children turned out to be born healthy and it was discovered long after my second (and last) pregnancy that my own seizures are caused by scar tissue in my brain, meaning my children *couldn't* have inherited epilepsy. But I still made the calculated choice to have children with a higher probability than normal of developing seizures because there is so much more to my life than my own disability and that life is fucking. Worth. Living.

Clearly other disabled adults feel the same. Don't wring your hands to "protect" a fetus from our disorders because we're *here* and our lives are worth living.
posted by sonika at 8:27 AM on February 6, 2016 [12 favorites]


I mean, what use is it to that mom to go out of her way to realize that her daughters were born into this terrible condition, and that there is just no upside at all? Her situation sucks, and she's entitled to any comforting delusion she can make herself believe.

What use it "truth" you mean? Cause this is essentially what you are saying. when you allow people their delusions. In so many other circumstances these days we do not think its good for people to be deluded and livign in a kind of fantastical lie. The problem is then of course who decided which delusions are the ok, or good delusions.

Was it too late to have an abortion after the second diagnosis?
posted by mary8nne at 3:58 AM on February 7, 2016


Y'know, I really did intend just to write the one comment, but I don't think my point was totally clear (this subject gets me carried away), and I don't think it's entirely incompatible with what Ryvar and others are saying, so I want to clarify. When I say "my autistic life is equal in value to an allistic life, and how dare anyone imply otherwise," I'm not stating this in any kind of opposition to abortion, prenatal testing, or other genetic technologies. I believe in an absolute right to abortion and determination over your own body. If you decide the right thing to do is to refrain from procreation or abort a fetus for whatever reason, I wouldn't think it's remotely my place to disagree or argue with you. But when people make the argument that disabled children necessarily lead lives worse than those of non-disabled children, it upsets me. Don't tell me how much suffering our lives must necessarily consist of (per ifdss#9 above) or exactly how severe our disability/disorder/difference must be in order for our life to not really be a life, and not worth living. People with neurodevelopmental and intellectual disabilities in particular get a lot of very insulting assumptions made about what our existence must be like, when we're usually more than willing to tell you. So one should tread carefully; if you would speak for the children, listen to the adults with similar experiences, and don't assume that a life with extensive accommodations is one without meaning.
posted by thetortoise at 9:45 PM on February 7, 2016 [2 favorites]


With all due respect, thetortoise, you don't have severe intellectual disabilities. The experience of high functioning autism is a world away from that of someone who is mildly intellectually disabled, let alone severely. It's not a terrible life, but it is a huge struggle for both family and child.

Moreover, no one said these children's lives aren't worth living. They said: if I could wave a wand and make my child not disabled, I would. They would lift a burden from their child.

I have a genetic mental illness; my partner has several serious specific cognitive disabilities. These have, of course, shaped who we are. In particular, his cognitive disabilities (commonly called learning disabilities, but they hit all aspects of life) have inspired him to create new ways of looking at data in his graduate research, because he couldn't do it the way everyone else does. But if he could wave a magic wand -- he would, in an instance. Yesterday.

As for me: I have absolutely no upside to my mental illness. It has lost me jobs, a degree, friends -- I do have an imperfect wand (medication), but I worry about it losing its effectiveness.
posted by jb at 6:16 AM on February 8, 2016 [3 favorites]


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