It is easier to care for a smaller person
March 24, 2016 10:00 AM   Subscribe

Should parents of children with severe disabilities be allowed to stop their growth? (SLNYT) When children with severe disabilities that rely on caregivers for every basic need enter adulthood the simple tasks of caring for them can become prohibitively difficult for parents. A small group of doctors and parents believe arresting their growth could be for the best, but is it ethical?
posted by selenized (81 comments total) 17 users marked this as a favorite
 
Some previous discussion.
posted by cass at 10:13 AM on March 24, 2016


And people ask me why I can't rule out the existence of God, and yet refuse categorically to worship it.
posted by Etrigan at 10:14 AM on March 24, 2016 [6 favorites]


A capitalist system will go to any lengths to reduce financial costs.
There are simple solutions to these problems, but we as a society aren't willing to pay for them.
posted by rocket88 at 10:28 AM on March 24, 2016 [2 favorites]


I could make the case that parents could want to arrest the growth of children without disabilities because its way easier to deal with them when they can't get into as much - such as medicine cabinets and knife drawers. Plus they'd be lighter so there would be less chance that they could pull furniture over on them. I think that it is as ethical an argument as the one being proposed.

By which I mean, no. It is not remotely ethical or in the child's best interest to ever have their growth suppressed in this method or for this logic.
posted by Nanukthedog at 10:32 AM on March 24, 2016


I could make the case that parents could want to arrest the growth of children without disabilities because its way easier to deal with them when they can't get into as much - such as medicine cabinets and knife drawers.

Hindering the growth of an otherwise normal child is not remotely the same thing as hindering the growth of a microcephalic kid who will never develop past the level of a newborn. That doesn't begin to take the reality of these parents' lives and the child's best interests seriously.

By which I mean, no. It is not remotely ethical or in the child's best interest to ever have their growth suppressed in this method or for this logic.

You've made a claim here with nothing to support it. If helpless child can be better cared for if they are small, and we have the ability to stop their growth, how is that not in their best interest?
posted by Pater Aletheias at 10:40 AM on March 24, 2016 [81 favorites]


We might have a useful conversation about this if people would stop jumping to whip out the most overwrought hyperbolic analogies they can think of.
posted by daisystomper at 10:42 AM on March 24, 2016 [36 favorites]


I think that it is as ethical an argument as the one being proposed.

That is not at all equivalent to what is being proposed. The core idea of the growth suppression is to allow for the parents to be able to provide better care longer for their children, not to prevent the children from injuring themselves. In a perfect world it would be possible to provide in-home aids for every parent of children with severe disabilities, but that's just not going to happen in the foreseeable future. Just doing the basic parts of bathing and physically caring for the children becomes dangerous to both parent and child as frailty sets in, which means they're more likely to have to be put into a group home, which in the real world also tends to lead to negative outcomes for the child.

I'm not saying it's absolutely a good idea, I'm saying it's worth considering the ethics of, rather than dismissing it with bad logic.

Have some empathy for a mother in their 60s that wants the best for their child but has to contend with someone with the anger and physical willfulness of a 3 year old but the body of a 35 year old man.
posted by Candleman at 10:45 AM on March 24, 2016 [90 favorites]


A capitalist system will go to any lengths to reduce financial costs.

I don't think it's as simple as that. People with severe mobility problems are much more likely to have joint, muscular, and skin issues (like bed sores) as they get larger. I haven't decided for myself whether it's ethical or not yet, but I do think there's a legitimate issue of comfort for the disabled person themselves.
posted by chimaera at 10:46 AM on March 24, 2016 [8 favorites]


I don't really see why parents should be prohibited from doing so.
posted by clockzero at 10:46 AM on March 24, 2016 [1 favorite]


[Couple of comments deleted. If we're going to have a thread on this, and I'm not convinced we can, people need to keep it out of the realm of tart sarcastic one-liners and hyperbolic flamebait comparisons.]
posted by LobsterMitten (staff) at 10:47 AM on March 24, 2016 [6 favorites]


Just because it would make things easier on the caregivers doesn't make it the best choice for those being cared for--it's saying that we as a society can't be arsed to provide adequate care and support to both caregivers and those who need them.

Aside from the physical labor involved, I get that there are real dangers to this work--I spent a summer working at a camp for developmentally disabled people and some of them were quite big and strong and sometimes some of them would physically lash out. But I just can't comprehend how this question would ever get beyond a hypothetical philosophical exploration. I'm not an ethicist or philosopher, but man, this raises all kinds of flags.
posted by smirkette at 10:48 AM on March 24, 2016 [3 favorites]


It is absolutely bizarre to me that this conversation consistently conflates medical intervention to limit size with medical intervention to prevent the outward manifestations of female sexuality. One seems potentially reasonable to me in certain situations, if nonetheless ethically fraught; the other seems absolutely out of line and to say something very, very ugly about our discomfort with female sexuality. "Pillow angels" indeed. Imagine proposing the castration of disabled boys in order to save their caregivers from the inconvenience of their erections. It's nauseating.
posted by pretentious illiterate at 10:50 AM on March 24, 2016 [14 favorites]


I cannot describe the deep, visceral horror such an idea brings about in me. I have no doubt that if my mental disabilities expressed themselves more inconveniently to my (emotionally abusive) parents, they would have been delighted to keep me in a child's body forever, a prop to hold up in order to demonstrate their great virtue to other parents.

I'm too terrified to participate in this thread, really. I have no desire to beg for the human dignity of myself and people like me with people who appear to have already disregarded it.
posted by The demon that lives in the air at 10:53 AM on March 24, 2016 [34 favorites]


I agree that the size limiting is not the same thing as removing breast buds, for example, in the girls. One mother even strangely comments she believes this will lessen the chances of sexual assault on her daughter by future caregivers, which I find to be an odd argument in favor of the surgery.
posted by agregoli at 10:56 AM on March 24, 2016


Just because it would make things easier on the caregivers doesn't make it the best choice for those being cared for

That is true; but any harm this might imply for those being cared for hasn't been clearly identified, either.

it's saying that we as a society can't be arsed to provide adequate care and support to both caregivers and those who need them.

But since that burden now largely falls to parents, they are the ones waiting for more help, not those of us who care to (rightly) critique the health care system. Should we decline to support those parents on the basis that, in a better world, they wouldn't need it?
posted by clockzero at 10:57 AM on March 24, 2016 [13 favorites]


"Consent" is the all-purpose answer for questions about what we may do to each other's bodies, but in this case there can be no meaningful consent. That's what makes this so hard. Legally and ethically we have a tradition of allowing parents to consent on behalf of their infant children for medical treatment, etc... but would never allow parents to consent to something with long term consequences like this on behalf of their normally developing children, for fear that the children would later say "I didn't want this!" and would still be living with the consequences...

So I think the article gets to the heart of the question at the end... you might be able to justify letting parents make the decision on behalf of children who will never, ever have the cognitive capability to say (or think) "I didn't want this." But how sure can you be that they won't? If you can be really sure, then I think the parents' consent can (must, by necessity) substitute for the child's.

Because it's quite possible that if those children could talk, could choose, they would in fact choose to stay small, so their families could care for them. Forcing them to grow and go through puberty is also making a choice on their behalf. So a choice must be made one way or the other, and I don't see who is can make it better than the parents, who will also bear a lot of the consequences.
posted by OnceUponATime at 10:58 AM on March 24, 2016 [20 favorites]


I just can't comprehend how this question would ever get beyond a hypothetical philosophical exploration.

An awful lot of medical ethics is trying to reconcile the world we want to have with the one that we do.
posted by Candleman at 11:03 AM on March 24, 2016 [26 favorites]


I have a friend whose daughter is the sort of child to whom this question applies. A few years ago, they had to raise $50,000 for a new van and wheelchair lift, because the van they had been using could not be outfitted with a lift capable of handling their daughter's growth.

I have no idea what my friend would think of this question, and I don't claim to speak for him whatsoever. But I feel strongly that voices like his are the ones that should dominate this conversation.

I will never know what it's like to raise a child who will never be able to speak, walk or communicate meaningfully. The vast majority of us will never know. What does it mean to have an opinion of the ethics of a situation that comprises its own world of daily realities, emotions, and suffering, when you don't live in that world?
posted by gurple at 11:05 AM on March 24, 2016 [62 favorites]


Andrew Solomon's book "Far from the Tree" has a moving chapter on what it is really like (insofar as that can be communicated in a book) to be the parent of a child like this, which I would recommend to people who have an interest in the subject.
posted by OnceUponATime at 11:06 AM on March 24, 2016 [5 favorites]


I think it's vital to differentiate between a choice that might be made in certain, very restricted circumstances, after careful consideration of the moral questions, and a choice that's freely available to everyone, unregulated and available to be imposed on any child by their parents.

That people are willing to immediately jump into the argumentum ad absurdum territory implied by the latter says more about the knee-jerk tendencies of those making the comments than it does about the children and carers to whom this might mean a major improvement in quality of life.
posted by pipeski at 11:07 AM on March 24, 2016 [19 favorites]


When a person is large and mean and attacks someone, we put them in jail. Once in jail, if the same thing happens, we look into ways of physically preventing them from doing it again (isolation or restraints or drugs), because it is a bad thing to do, and they apparently didn't learn that lesson or whatever.

We obviously don't want to put disabled people in jail. But that doesn't make it okay to hurt others. Sky Walker killed his mother due to his strength and size and anger. Are there situations where this is appropriate?
posted by Melismata at 11:10 AM on March 24, 2016 [1 favorite]


I suspect the daily ethical decisions that are made by the parents (and caregivers) of profoundly disabled people would bring me to my knees, but this one is particularly hard, and I don't know that I would trust myself to make the right decision for my child.
posted by Rock Steady at 11:10 AM on March 24, 2016 [11 favorites]


I cannot describe the deep, visceral horror such an idea brings about in me. I have no doubt that if my mental disabilities expressed themselves more inconveniently to my (emotionally abusive) parents, they would have been delighted to keep me in a child's body forever, a prop to hold up in order to demonstrate their great virtue to other parents.

I'm too terrified to participate in this thread, really. I have no desire to beg for the human dignity of myself and people like me with people who appear to have already disregarded it.


The people the article discusses who receive this treatment will never have mental or physical abilities beyond those of infants. I empathize with your discomfort, and in no way mean to diminish your abuse, but extrapolating from their situation to yours is inappropriate.
posted by milk white peacock at 11:20 AM on March 24, 2016 [45 favorites]


Imagine proposing the castration of disabled boys in order to save their caregivers from the inconvenience of their erections.

There is a significant difference between an erection (inconvenient or otherwise) and having a period, which for many women causes severe pain and significant blood loss each month. Not to mention that disabled adult women can certainly be the victims of sexual assault, and could possibly end up pregnant from such an assault, with parents/caregivers then having to make the decision about whether or not to allow the pregnancy to come to term in an adult woman who could not possibly comprehend what was happening to her body.

I'm not in a place to say whether a hysterectomy for a profoundly disabled girl is an ethical choice or not, but drawing an analogy to castration is a completely false equivalency, and sort of implies that you don't really understand what personal care related to menstruation can entail.
posted by anastasiav at 11:25 AM on March 24, 2016 [37 favorites]


I think it's probably healthy to feel horror at this situation. Because we live in a society that is no longer depraved enough to outright kill anyone who's disabled, but still too depraved to actually provide for their needs.

Which leaves the families to do it, who must draw on their own emotional, physical and financial resources*, and very few of them have enough of all three to be equal to their child's needs. And under those pressures, which are hard for anyone not in that situation to even imagine, families make choices.

If we do not like the choices, we should examine the pressures that lead to them.

*I think the ironic part is that a family that can afford these surgeries and drugs is probably well-off, I doubt insurance or Medicare covers much if any of it. But even a fairly well-off family is going to be severely stressed by the lifetime needs of a majorly disabled child. Families that start out poor will never have these discussions because it's not even on the table.
posted by emjaybee at 11:27 AM on March 24, 2016 [30 favorites]


God damn these parents who are going to these lengths in the attempt to be able to do what they can in a situation that is, to me, beyond bleak are bona fide, and I mean this literally, saints.

Maybe I'm internalizing overmuch, but, due to some exposure to a situation not unlike that in the article, I've always looked towards parenthood with extreme anxiety in the face of potentially becoming the lifelong caregiver to a person who is severely disabled and I just don't think I could do it, I don't.

Our first just turned two and we have one due in late summer and then we're calling it quits (unless we adopt a bit further down the line) and I am more aware with each passing day of two things: one, that it is hard and only going to get harder and two, that there are milestones and goals to revel in and look forward to. The two year old is walking, talking (almost conversing really), coloring, counting, sleeping well, and approaching potty trained with alarming and joyous rapidity. The idea of doing it all again, and this kiddo was a good one I think, with number two is nothing to take lightly but, assuming we're blessed with a healthy kid again, nothing we can't handle.

The idea of having a two year old forever... A person that you love and must do *everything* for that grows continues to grow larger and stronger, even as you apex and begin to grow smaller and frailer... I don't know the ethical answer, I really, really don't. But I do know that these parents are, as I said, saints.
posted by RolandOfEld at 11:35 AM on March 24, 2016 [26 favorites]


Sky Walker

Jesus wept. I'm glad nobody else is home.
posted by RolandOfEld at 11:41 AM on March 24, 2016


One of the things that makes this question harder is that arresting growth could make care better for some of these individuals even with sufficient resources. Consider the case of a man with the mind on an infant. I can't help but think he would get better, more appropriate care in the body of a small child than he would in the body of an adult regardless of how much you spend. It would allow the parents to remain primary caregivers longer, reduce the risk of him injuring others, and most importantly, everyone wouldn't have to treat him as if he could severely injure them. This would lead to better, more compassionate care. So, even if we did provide sufficient assistance, the question would remain (but would be less important).
posted by Mitrovarr at 11:45 AM on March 24, 2016 [8 favorites]


I find the harsh judgment of these parents astounding. It is impossibly hard to know the energetic and emotional toil of raising a severely disabled, hopeless child without living through it. And it is so, so easy to judge.

I know of several families who have secretly sent their severely disabled children to live in permanent facilities because they didn't have the capacity to dedicate themselves to the disabled child and to their healthy children at the same time. I cannot possibly judge them, and I propose that almost all commenters ineligible to, as well.

The parents who do opt to remain devoted to their children in extremely difficult circumstances? I think they're heroes. And if this makes their lives more manageable (and by extension, gives these children caregivers who are slightly less distraught), then it is a good thing. As a neuroscientist, I can assure you that this treatment is unlikely to reverse any improvement in their situation. I see only relief of extra stress.
posted by namesarehard at 11:45 AM on March 24, 2016 [18 favorites]


The people the article discusses who receive this treatment will never have mental or physical abilities beyond those of infants.

How sure of that are we? Where do we draw the line?

The potential for abuse is just completely terrifying. I'm not normally one for slippery-slope arguments, but our society does not have a good track record for drawing these lines.

One could make the argument that, at certain points in her life, Hellen Keller would not have been able to give meaningful consent or refusal for this therapy, and very likely could have been identified as a candidate for it.

There are no good answers here.
posted by schmod at 11:46 AM on March 24, 2016 [8 favorites]


Apparently we used to do this to healthy girls who would otherwise simply have been "too tall to be attractive". Parents have long had surgeries performed on their children in pursuit of attractiveness. Cleft palates, eneven gaits, ear and nose deformities. Why is it ok to surgically alter a child to be more in line with conventional attractiveness, but not to dose them with hormones to keep their bodies from outpacing their minds?
posted by domo at 11:48 AM on March 24, 2016


Hellen Keller did not have the benefit of today's medical knowledge. It can be KNOWN that some of these children won't progress past a mental 6 months of age, etc.
posted by agregoli at 11:49 AM on March 24, 2016 [7 favorites]


Hellen Keller would not have been able to give meaningful consent or refusal for this therapy, and very likely could have been identified as a candidate for it.

Helen Keller was independently mobile. She could walk from place to place, and didn't need to be lifted or carried to be dressed or toileted. That, in an of itself, would today rule her (or any child with similar impairments) out as a candidate for this.
posted by anastasiav at 12:01 PM on March 24, 2016 [27 favorites]


Parents have long had surgeries performed on their children in pursuit of attractiveness. Cleft palates
There are many medical issues that can arise from an unrepaired cleft palate, including dental, speech and feeding problems and chronic ear infections that can lead to hearing loss. This is not a purely cosmetic surgery.
posted by soelo at 12:06 PM on March 24, 2016 [30 favorites]


I don't like calling disabled kids' parents "heroes" not because they don't do extraordinary things (because they do) but because essentially they only have two choices: hero or monster. The fact that most of them choose hero is inspiring, but it would be even better if they had the option of being just a parent (which is hard enough), not a superhuman. I think most parents would prefer to be just parents, even if their kid is disabled. They need help, not inspirational articles or medals.

It's like the putting-women-on-pedestals thing; it's framed as a compliment, but what it really is is a sentence.

And it doesn't do disabled kids any favors, because if your parent has to be a hero to care for you, what does that make you? And what happens to you the day your parent can't find the strength to be a hero anymore?

We need a system which allows even normal, nonheroic people of average capability to be good and loving parents to their disabled kids.

The FPP piece wants us to decide whether these parents are heroes or monsters. Do they belong on a pedestal or a in a jail cell? But that's a distraction from the questions we should be asking.
posted by emjaybee at 12:28 PM on March 24, 2016 [73 favorites]


Filicide-suicide (murder of a child followed by suicide of the parent) is a real thing, especially as the parents reach physical/financial limits and see no safety net for their child. If USA society could quit debating the saint/sinner status and redirect that time/energy into providing appropriate resources for these families, it'd be much appreciated. It's not as if the families desire to face such decisions.
posted by beaning at 12:36 PM on March 24, 2016 [21 favorites]


I want to note that for the most part, this conversation has been handled remarkably well. Medical ethics is a very tricky and emotionally volatile field and very few of us have been trained in it. Kudos to the mods and to the participants.
posted by Sophie1 at 12:36 PM on March 24, 2016 [4 favorites]


I sometimes care for profoundly disabled children such as the ones described in the article, and I also am on our hospital's ethics committee, so this issue pushes a lot of my buttons. Most people have little or no interaction with the type of patient described in the article and don't appreciate the burden of caring for them. It is not unusual for these patients to be in diapers, fed through a gastrostomy tube, breathe through a tracheostomy, and so on. Things you take for granted such as dental care have to be done by someone else. To give just one example of how things are interconnected with these patients, many of them develop severe scoliosis because their muscle tone is abnormal. This in turn makes it very difficult to position them in a bed or wheel chair, which is not a trivial consideration because it makes it hard to get them to the many medical appointments they require and predisposes them to further problems, especially decubitus ulcers (bedsores). So it is fairly common for these patients to get scoliosis surgery, which in this group is a long, potentially risky surgery with the need for care in the ICU for several days afterward. Yet in spite of these difficulties, many, probably even most of the patients like this that I see are clean, well nourished, and well dressed. Accomplishing this level of care is a full-time, around the clock job that falls mainly on the family and that takes time away from other members of the family. I can certainly see how tempting anything that would lessen that burden is. And by making it easier to care for the child you can improve the quality of care as well. Having said that there are certainly some serious ethical questions raised by this procedure. I am glad it has never come up at our hospital (at least the surgical aspect; I wouldn't necessarily know if a patient had undergone the non-operative portions of the treatment). I agree that the parents should have a large voice in debating this sort of treatment, but it is important to remember that the doctors, nurses, and other health care workers can be very emotionally involved in patient care. The people I work with would be very upset if they were asked to help provide this sort of treatment without warning. At the very least it should not be undertaken without extensive multidisciplinary discussion ahead of time, including the legal implications, perhaps with a guardian ad litem or similar person to speak to the child's interests. There are no quick and easy answers here.
posted by TedW at 12:44 PM on March 24, 2016 [48 favorites]


It is absolutely bizarre to me that this conversation consistently conflates medical intervention to limit size with medical intervention to prevent the outward manifestations of female sexuality. One seems potentially reasonable to me in certain situations, if nonetheless ethically fraught; the other seems absolutely out of line and to say something very, very ugly about our discomfort with female sexuality.

Since no one else has addressed this yet -- the way growth is being limited here is by bringing on early puberty with estrogen. That means that girls treated this way will, if they don't have hysterectomies (which is not intended to affect an "outward manifestation" of sexuality), start menstruating years earlier than they otherwise would, and both boys and girls will (if breast buds are not removed) develop breasts at a this very young age.

These side effects are physically uncomfortable, as well as causing the child's body to appear sexually mature at an inappropriate age (and in some cases causing them to develop characteristics of the wrong sex.)

Long term, it is important to remember that these are people who will be unable to ever meaningfully consent to sexual activity. Any sexual activity they could possibly have would necessarily be non-consensual. In the case of women, they will also be unable to consent to pregnancy, and if they were to conceive (by rape), pregnancy would be unbelievably dangerous.
posted by OnceUponATime at 12:55 PM on March 24, 2016 [19 favorites]


I think this thread would benefit greatly if we all decided that making comparisons should be off the table. This is an extremely sensitive and nuanced topic. Any deviation from the basis laid out in the article is not going to be the discussion we need to have.
posted by FirstMateKate at 1:02 PM on March 24, 2016 [8 favorites]


Cleft palates, eneven gaits, ear and nose deformities. Why is it ok to surgically alter a child to be more in line with conventional attractiveness
posted by domo at 1:48 PM on March 24


I see your point, but those are all surgeries that typically have medical reasons, not cosmetic ones (or not solely cosmetic ones). Uneven gaits can cause hip problems, ear and nose deformities can affect ear and nose function, and cleft palate surgeries are absolutely a medical intervention. Amongst other things, a cleft palate can prevent suction, which makes breast-feeding impossible.
posted by joannemerriam at 1:03 PM on March 24, 2016 [3 favorites]


I can see a case-by-case basis for this, but all in all, this should definitely be the caregiver's prerogative to do. I can't see a good reason not to.
posted by roomthreeseventeen at 1:06 PM on March 24, 2016 [3 favorites]


I can't favorite Emjaybee's comment enough, especially this: We need a system which allows even normal, nonheroic people of average capability to be good and loving parents to their disabled kids.

Parents (face it, mostly mothers) shouldn't have to be heroes in order to care for their disabled kids. Likewise, the kids with disabilities deserve to have their dignity and human rights respected. We badly need a system that can do both. It's going to need money that politicians, bean counters, and "drown the beast" anti-government types don't want to spend, and it's also going to need a basic respect for care work so that aides and caregivers will have decent pay and working conditions. (FWIW I think that would cut out a lot of the sexual abuse that happens now; with good pay, decent working conditions, and stringent background checks, paid care work won't be a last resort for the otherwise unemployable that it sometimes is.)

One reason I chose childfreedom is that I knew I would not be able to be a hero if I had a child who required intensive, life-long care. (ONE reason. I have a list as long as your arm of reasons I never had kids.)
posted by Rosie M. Banks at 1:07 PM on March 24, 2016 [8 favorites]


Imagine proposing the castration of disabled boys in order to save their caregivers from the inconvenience of their erections.

When I worked for a pediatric neurologist, we had a teenage male patient who was microcephalic, non-ambulatory, and non-verbal - a very severe level of neurological disability, in other words. His parents asked if we would write a letter of support for starting him on anti-androgen medication (ie, 'chemical castration'). This is because he was masturbating so frequently that his penis was rubbed raw and often infected. For example, he started masturbating during his office appointment, with the physician, his mother and his aunt crowded in a fairly small room. Other solutions, such as gloves and near-constant monitoring, were not working. The remaining alternative was to restrain him indefinitely, which seemed even more cruel than the medication because the child actively disliked being restrained.

The physician ultimately wrote a letter of support after consulting with the hospital bio-ethicist, an attorney, and his rabbi.
posted by palindromic at 1:15 PM on March 24, 2016 [31 favorites]


This is such a difficult issue that I don't even feel comfortable trying to form an argument on the central ethical debate. But I will say that this attitude is very troubling:

“It’s probably not high on the F.D.A.’s radar, and to be frank, I would think that would be a terrible thing if it were, because it would create new barriers for these families,” Zeitler says. “The F.D.A. is going to say, ‘You shouldn’t be doing this unless there’s outcome studies.’ It would be ideal if we had outcomes, but they take 10 years. And meanwhile, what about all these families who are earnestly looking for help?”

This kind of treatment, highly invasive and performed on a patient incapable of consent, has to be approached with a tremendous amount of caution if it is to be done. Doctors who express this level of eagerness to skirt past proper drug approval procedures should probably not be the ones pioneering it.
posted by parallellines at 1:42 PM on March 24, 2016 [2 favorites]


My sister was exactly the sort of person this article contemplates: never learned to walk, crawl, talk, feed herself, use the bathroom, or dress herself. Her cognitive skills never developed beyond that of a typical 6-12 month old. She was relatively healthy and happy for the first fifteen or so years of her life, when her body began to break down, and her physical abilities regressed.

Thank God she never grew to be bigger than about 95 pounds. That allowed us (my aging mother, mostly) to take care of her as much as we could for as long as we could. I don't know if we could have made the decision proposed in this article. It would have felt terrible to close the door forever on getting better, even though we knew rationally that there was no chance of that occurring. But if we had--it unquestionably would have made many, many, many aspects of her life (and our lives) much, much, much better. I don't know if being smaller would have made it easier on her body, made it possible for her to play with toys, grab things, roll around on the ground, lift her head to look at things that interested her, or any of the other physical activities she enjoyed doing when she was smaller, but it seems plausible to me, and that would have been fucking awesome. I really don't know what we would have done, nor should have done, but if it had been possible to do back then, we would have thought very, very hard about it. And if I had learned that it was possible to do but we weren't even given the option because of the thousand "but what if--" and "but where do we draw the line?!??" questions, I would have been enraged.
posted by skewed at 1:58 PM on March 24, 2016 [53 favorites]


If I were the parent of such a severely-impaired daughter, I'm far from sure that I would seek this set of interventions, but I'm positive I would try to get court permission for sterilization. The rate of sexual assault against this population, especially in institutions, is terrifyingly high (and probably still underestimated). There is no chance she could consent to sex on her own, and the last thing a child in that condition would need is to have to go through an abortion.
posted by praemunire at 2:08 PM on March 24, 2016 [8 favorites]


In a perfect world it would be possible to provide in-home aids for every parent of children with severe disabilities, but that's just not going to happen in the foreseeable future.

Well, that's the thing, isn't it? This is a solution to a problem that shouldn't exist. The reason it exists is because a) our social safety net is in tatters, and 2) people still think like this:

But I feel strongly that voices like his are the ones that should dominate this conversation.

But I do know that these parents are, as I said, saints.

It is impossibly hard to know the energetic and emotional toil of raising a severely disabled, hopeless child without living through it.

this should definitely be the caregiver's prerogative to do. I can't see a good reason not to.


C'mon, guys. Parents of disabled kids aren't superheroes, and they don't have special insights into the raising of disabled children that are somehow more valuable than the input of actual disabled people. SO much disability advocacy centers the burdens placed on parents raising disabled children ('hopeless'? seriously?), and minimizes the voices of those children once they're grown.

If we're trying to speak for the voiceless, maybe ask the people who can speak and who have first-hand experience of being a disabled child? Many of whom have probably spent their lives hearing *their* caregivers described in exactly these terms, and who might just have some meaningful input on the situation. And yet I don't think a single disabled adult was quoted in that article.
posted by nonasuch at 2:18 PM on March 24, 2016 [11 favorites]


My thing is weight, because adults are heavy. A lean man can easily be 160 lbs. Not only do you have to lift and clean for every bathroom, you have to transfer to and from beds, transfer to shower, bathe, rotate, and continuously rotate. That's 160 lbs a caregiver is handling all day every day and that is exhausting.

In my opinion, every part of their lives is already invasive, and many candidates have trachs, g tubes, colostomy bags, vents and so on. Manageability for the provider(s) is important because in the end it is only the providers keeping the person alive.
posted by AlexiaSky at 2:26 PM on March 24, 2016 [8 favorites]


If we're trying to speak for the voiceless, maybe ask the people who can speak and who have first-hand experience of being a disabled child?

If they can express themselves, by definition they are not part of the population the article is talking about?
posted by RedOrGreen at 2:27 PM on March 24, 2016 [44 favorites]


[A few comments deleted. Since even the person who posted it doesn't think the lobotomy comparison is really the same as the kind of case under discussion, let's leave that very inflammatory comparison behind now rather than taking a big side trip to argue about Kennedys.]
posted by LobsterMitten (staff) at 2:33 PM on March 24, 2016 [2 favorites]


If they can express themselves, by definition they are not part of the population the article is talking about?

I was going to make a similar point, but it is worth noting that the article did not, for instance, provide comments from someone who suffers similar physical incapacities, but not mental ones (or a representative of same). I wouldn't treat that opinion as absolutely definitive because I don't think such a person is similarly situated enough to give it overriding weight, but it would be well worth having.
posted by praemunire at 2:45 PM on March 24, 2016 [7 favorites]


In a perfect world it would be possible to provide in-home aids for every parent of children with severe disabilities

Or in a just slightly better world.
posted by Space Coyote at 3:23 PM on March 24, 2016 [4 favorites]


The most honest, farest and the most ethical way is to allow those people with the problem to decide. Only they know how does it look, how hard it is and could they take it. Only they can disscus about this because they know how it feels.
It's unfair that "we" decide something while the "pack saddle" is on somebody else's back. (1 ton isn't heavy as long it's on somebody else's shoulders).
posted by korpe4r at 3:30 PM on March 24, 2016 [3 favorites]


"the problem" is a human being.
posted by hydropsyche at 3:34 PM on March 24, 2016


No, the problem is how to continue caring adequately and lovingly for a family member who requires near-constant assistance without completely depleting the caregivers.
posted by namesarehard at 3:40 PM on March 24, 2016 [19 favorites]


Yeah, "the problem" is not a human being, and no one in the article is suggesting that, nor is anyone in this thread that is open to the treatment being discussed. The problem is how to best care for someone who is physically an adult but needs all the care of a child, and doesn't possess the mental capacity to tell their caregiver what they need or want. These parents were able to deliver a certain standard of care for their children when they were infants or small children. The physical maturation of the child disrupts that standard, and arguably in all ways brings it to a lower one. This treatment is an opportunity to prolong the previous standard of care.

Even if we had fully paid for, in care help, there are some physical consequences to getting older and larger with some of these severe disabilities that are just physically uncomfortable for the person with them.
posted by permiechickie at 3:42 PM on March 24, 2016 [4 favorites]


With enough people, you can move even the largest adult. The staff of ORs move dead-weight adults all day long. It is awful that the state of care is such that families have to consider these options because they can't manage on their own and have no other options. It is awful that sexual assault is so prevalent in caregiving that we have to think about sterilising people for harm reduction.
It is entirely reasonable for people with disabilities who are capable of communicating their needs to be alarmed and disturbed by the implications of this discussion. The compromises being made here are necessary but terrible, and they set precedents that have the potential to affect the autonomy and well-being of all people with disabilities.
posted by gingerest at 3:56 PM on March 24, 2016 [13 favorites]


I read this the other day:
90 per cent of intellectually disabled women in Australia have been sexually abused
That news site is a bit of a tabloid, but it's quoting a legitimate source based on the Australian Law Reform Commission Report 114 p. 1105. You can find that here.

So. Ninety percent of intellectually disabled women overall, more than two-thirds of intellectually disabled women below the age of eighteen. And that's including a whole spectrum of people, most of whom would be able to object or report in some way. The people we're talking about in the FPP are the very most vulnerable and ... well, every choice in this situation is heart-breaking.
posted by Joe in Australia at 4:41 PM on March 24, 2016


Every choice in this situation is not heartbreaking. There is one choice--to work, with actual political will, to provide the necessary resources (logistical, emotional, mechanical, etc.) to caregivers such that they never have to consider these kinds of procedures--that we're simply unwilling to pay for.

Society does not value the bodily autonomy of disabled people nor the needs of their caregivers enough to invest in that solution. There is a calculable dollar amount to solve the problem, and we as a society have decided it's too high.

essentially they only have two choices: hero or monster

It's worth noting that disabled people are more often than not viewed as being only one of these two things. Either they are seen as heroes because they successfully do everyday things like having a job, getting married, or playing a sport, or they seen as are helpless objects of pity, fear, and disgust that need to have things done to them to lessen the burden they impose on their families and on society. Rarely are they seen as the regular people they actually are.
posted by jesourie at 5:13 PM on March 24, 2016 [11 favorites]


I've been a nurse's aide in a permanent care nursing home, a well run, well equipped one, and the smaller immobile patients had much better health (fewer bedsores, easier breathing, maybe better digestion) than the larger patients. Even with lifts and specialized beds and chairs and doing the really difficult stuff at shift change, with double staff. The square-cube law doesn't relent.
posted by clew at 5:21 PM on March 24, 2016 [31 favorites]


Damn straight, clew. The insistence on seeing this is a purely economic problem is very frustrating. This isn't about better healthcare, of course we need that, but there are problems that can't be solved by providing a home healthcare worker.
posted by skewed at 5:36 PM on March 24, 2016 [6 favorites]


There is one choice--to work, with actual political will, to provide the necessary resources (logistical, emotional, mechanical, etc.) to caregivers such that they never have to consider these kinds of procedures--that we're simply unwilling to pay for.

But even that isn't sufficient to make this dilemma irrelevant in all cases. What of someone who must be restrained at almost all times in order to be cared for safely? Wouldn't it be better for their growth to be suppressed before it got to the point they were big and strong enough to require such? All the resources in the world wouldn't make that choice irrelevant.

I don't really know the answer but I know that "devote more resources!" isn't sufficient. It may be necessary but it doesn't make the problem go away.
posted by Justinian at 5:47 PM on March 24, 2016 [3 favorites]


I know this doesn't address the entire issue, but an ethically consistent solution would be to redefine bodily integrity a bit such that no one goes through puberty (and its accompanying growth spurts) without giving consent.
posted by nobody at 5:54 PM on March 24, 2016 [6 favorites]


nonasuch: C'mon, guys. Parents of disabled kids aren't superheroes, and they don't have special insights into the raising of disabled children that are somehow more valuable than the input of actual disabled people. SO much disability advocacy centers the burdens placed on parents raising disabled children ('hopeless'? seriously?), and minimizes the voices of those children once they're grown.

I agree, but it's also difficult, exhausting work that requires heroic effort because the right supports aren't there. But there's this disconnection between disability rights and what they have have to do as day-to-day caregivers. That's understandable. This is hard, hard work. But when they embrace growth attenuation and other things like it - they endorse a perhaps unintended threat that is rightfully horrifying. I'll give them the benefit of the doubt on it, but they're introducing a whole series of other complications.

I think this quote sums up what you're getting at:

About nine years ago, the family went to Disneyland. It was still relatively easy to fly with Jessica then, but upon landing she vomited on herself and Sandy. Sandy made a mat from clothes in her suitcase, lay her daughter down in a handicapped stall at the airport and wiped off both of them. “But then I realized the terrible truth,” Sandy says. “I had to lift her, by myself, from the floor to the chair — no easy feat. If ever I wished for a shorter girl, it was then.” Walker believes that if growth-attenuation therapy had been available when Jessica was a small child, she and James would have considered it. “I’ve been shocked by how the disabled community has reacted to it,” she says. “These people speak of the ‘perspective of the disability community’ as though we are not part of it. It makes us feel disenfranchised by the very organizations that were put in place to protect Jessica and our family.”

Um. "These people" are the people fighting for the kind of resources you need as caregivers. And they are, in many cases, saying the burden shouldn't be entirely upon you, the parent.

Nothing About Us Without Us is a way to think about this.

As regards the NYT article: if you're writing about disability and you throw around the term "handicapped stall" it immediately tells us you know little about the topic. The stall is accessible or it's not. It's not "handicapped" in and of itself, and because that's a done-for term, and, moreover, since you, writer, didn't interview any people with disabilities, perhaps you should consider researching your subject matter better.
posted by mandolin conspiracy at 6:06 PM on March 24, 2016 [4 favorites]


It's funny: My daughter is developmentally disabled, but it gives me zero ethical insight into this. It feels like it would be easier for me to make sweeping, insightful statements if I wasn't caring for a person with some of the limitations being discussed.

I do appreciate the insight which everyone else has brought, though.
posted by clawsoon at 6:09 PM on March 24, 2016 [4 favorites]


I don't really know the answer but I know that "devote more resources!" isn't sufficient. It may be necessary but it doesn't make the problem go away.

I don't think the goal is to make the problem go away as much as is it to allow give the families the support needed to function in the best possible manner, whether it be in home care or institutionalized care. As to how this treatment would impact life long care, in a decent society, we would already have some idea because families would have been fully supported prior to the development of this treatment.
posted by beaning at 6:27 PM on March 24, 2016


And the size vs the menstrual/sexual issues seem so intertwined. I can understand very restricted use of treatments to limit size in a fully supported family, but the menstruation issues are a totally separate issue. Even cognitively typical women, there are numerous questions about how to cope with periods, cramps, birth control, etc. I don't even know how to imagine being mentally incapacitated and having my body just regularly or irregularly do the cramps/bleeding/mood swings, and then being in the USA medical system which so strictly limits access to a wide range of treatment options...and every month for 30 freaking years ....and then menopause... whether as the parent or as the child ....oh my goodnesss....
posted by beaning at 6:30 PM on March 24, 2016 [3 favorites]


Add to all this the fact that PSWs are radically underpaid for the work that they do. Add to that families needing to access Byzantine systems of funding and insurance just to get a little relief from the work they need to do every minute of every day.
posted by mandolin conspiracy at 6:39 PM on March 24, 2016 [2 favorites]


I learned that the people who manage medicaid home services (in this state) dont give parents with young children respite carewith complex needs until they are old enough that they should be able to do things for themselves unless they need skilled nursing care until about 5. After they are about five, then a consumer is eligible for respite care of a max 20 hours a month. Provided you meet the income requirements. Which is less than 1 day of a month.

If parents can't meet a need hours can increase. But someone has to be there to manage and supervise the care due to risks, and the fact that most aide worders are not trained,
. You can train aides to be able to provide a specify need (like suctioning, wound care), but that's not really respite is it?
posted by AlexiaSky at 7:24 PM on March 24, 2016 [1 favorite]


"Um. "These people" are the people fighting for the kind of resources you need as caregivers. And they are, in many cases, saying the burden shouldn't be entirely upon you, the parent."

That's cold soup if they're also fighting against possible solutions and aren't successful in getting the resources needed to address the problem.

I'd also venture that the "disability community" is a useful shorthand, like "the LGBT community," that can obscure the fact that those are actually multiple communities with very different perspectives and needs. Someone born with CTEV may be a better advocate for someone with Down syndrome than a random person on the street, but may not be as attuned as an immediate family member to someone with Down syndrome.
posted by klangklangston at 10:21 PM on March 24, 2016 [3 favorites]


In the end, I come to the conclusion that is it not beneficial to the severely disabled person to keep their genetically intended height and weight and PMS and ability to make babies they can't consent to making or take care of, nor is it beneficial to their caregivers either because it makes it so much harder to take care of them. Other than "don't interfere with nature," I can't think of any reason to not stunt their growth in these situations.

"it's saying that we as a society can't be arsed to provide adequate care and support to both caregivers and those who need them."

Yes, but that's absolutely true most of the time. Hell, hiring one caregiver to watch my dad during the day cost more than my mother even made. Usually all caregiving is on the live-in relatives, whoever they may be, however few or many there may be. I know a few lucky folks who can/could get respite care from insurance, but we sure couldn't. And most of the time caregiving is being done by women, who are probably not always tall and strong and able to lift say, full grown teenage sons in wheelchairs a bunch of times a day.
posted by jenfullmoon at 11:49 PM on March 24, 2016 [5 favorites]


The usage of the word "disabled" to cover an enormously wide variety of functioning levels is really not helpful in this conversation.

There exist profoundly disabled people, and by profoundly I mean: they cannot walk on their own, they cannot eat on their own, they cannot communicate beyond grunts and crying, and they are capable of hitting an adult with enough force to cause serious injury without being aware of the implications of what they are doing. These people need to be fed, bathed, and have their diapers changed, not to mention the already mentioned point that they must be moved about lest they develop bed sores, (and someone else needs to do the moving because they cannot move themselves).

The difference between caring for such a person, sized eight-years-old, and sized thirty-years-old, was, at least at the volunteer respite center I worked at, one person vs three. Now, sure, in an ideal universe there's an infinite supply of people to help take care of the disabled, but in practice, the single mother I knew was taking care of her son almost entirely by herself, and he was only getting bigger, and not any less unintentionally violent. (she had people volunteering to help, but guess what, as he became bigger and scarier, less and less people were willing to do so.)

To get from people like those to people sufficiently non-disabled they are posting comments on metafilter is an extremely strained slippery slope argument.
posted by Cozybee at 12:22 AM on March 25, 2016 [13 favorites]


Ricky was weaned off the estrogen when his bone age reached about 15 years, instead of the recommended 16, because his toes were turning purple. This was a symptom of thrombosis, a side effect of estrogen treatment.

This thread has gone on as if there are no side effects to this. That sentence should ring some major alarm bells - purple toes meant that he had developed enough blood clots in both legs to impede blood supply. And once those clots are there, they can move; they get to the lungs, and that's a pulmonary embolism, which has a mortality rate of 15% - and given that its symptoms are chest pain and breathlessness, which Ricky would not be able to communicate and thus not get early treatment, I'd guess higher in a patient like him.

For girls, the mortality rate for elective hysterectomy is tiny, but not zero - and again, probably higher in these girls because they won't be able to tell anyone their symptoms. (The article doesn't suggest anything potentially life-threatening about thier hormonal treatment)

I doubt this will shift anyone's thinking either way, but I was very uncomfortable reading through this thread with no mention of potentially fatal side effects of this treatment.
posted by Vortisaur at 12:56 AM on March 25, 2016 [5 favorites]


"I doubt this will shift anyone's thinking either way, but I was very uncomfortable reading through this thread with no mention of potentially fatal side effects of this treatment."

I think that most of us realize that questions about balancing side effects are medical ones that depend intimately on the patient and that their doctors are the best people to give an opinion about specific trade-offs there.
posted by klangklangston at 8:54 AM on March 25, 2016 [5 favorites]


sufficiently non-disabled they are posting comments on metafilter

Surely you're aware that many people with severe physical disabilities requiring near-total assistance with activities of daily living and with complex medical care regimens have no cognitive or intellectual disabilities whatsoever, and could very well be posting things on Metafilter every day. Or they could have some cognitive and intellectual disabilities and post anyway.

There is no such thing as "sufficiently non-disabled."
posted by jesourie at 1:46 PM on March 25, 2016 [5 favorites]


Or they could have some cognitive and intellectual disabilities and post anyway.

The article restricts its focus to people with cognitive capabilities that will never be greater than that of a one year old, right?
posted by nobody at 2:27 PM on March 25, 2016 [6 favorites]


My sister is similar in size to Jessica in the story, but she and my parents are a little older. She lost a lot of physical freedom when she got a gastrostomy tube at 16, because the following growth spurt, as mentioned by someone above, increased the severity of her scoliosis and she had to have rods put in her back. She could no longer roll around on the floor like she had.

Our family is very lucky because my parents have the means to do things like build a house with wide doorways on the main floor and an open shower that we could put a bath chair in. They also supplement the income of her full time aide, paying for vacation and his insurance. My mom had also done an amazing job of navigating the benefits system and advocating for her. We also live in Minnesota.The state provides quite a bit, like the, hoyer that was recently installed in her bedroom and bathroom.

I have often thought how lucky we are that my sister is exactly who she is. She is small enough that I can transfer her, bathe and dress her, and change her diapers. She has never severely injured anyone (including only bruising herself) when she hits. (Our belief is that she is just reaching for people or objects, but does not have the motor control to moderate her movements. We do not believe her to be intellectually capable of connecting the effect of her pain or ours with the cause of her wild movements.)

If she was smaller, I have no doubt that she would be included in even more family activities. I take her on walks, but I am too afraid to transfer her to my car (even though my folks do it all the time) because I have this horror of dropping her and breaking her legs.

There are serious side effects of these treatments (the purple toes horrified me, too), but there are many dangers to being a person who is difficult to move, too. A girl we knew through the respite care facility my sister went to (until we decided that the distress going there caused her...and also us was too much) died following injuries sustained after being dropped during a transfer.

I have a lot of feelings about the prospect of taking over my sister's care when my parents can no longer do it, some relating to the loss of freedom in my life, but most concerning how I will maintain her quality of life with my lower net worth. I agree that this issue needs to be considered foremost in regards to the perspective of the disabled person, who in any of these cases cannot speak for themselves.

Long story short, if we are concerned with the happiness of these specific individuals, and especially if this is happening now, it must be studied.

Apologies for typos. I'm on the phone in the car. And I love my sister a lot.
posted by MsDaniB at 5:03 PM on March 25, 2016 [30 favorites]


The article restricts its focus to people with cognitive capabilities that will never be greater than that of a one year old, right?

Yes? I was responding specifically to what I felt was a deeply problematic turn of phrase in a comment.
posted by jesourie at 5:34 PM on March 25, 2016 [1 favorite]


jesourie, I agree, my comment was not well phrased.

The entire section of medical ethics regarding a patient who cannot communicate their own preferences, moreover, who has never been able to do so (such that it's not possible to at least attempt to go by what we guess they'd want or what they previously said they want), nor are we certain they have the cognitive level to have a preference (based on our current level of medical knowledge of their condition), is really murky, and I think it's muddying the waters further to include the dilemmas involved with people who definitely have and/or can express a preference.

Ability to post on metafilter was an overly blithe way of generalizing that category (which should anyway include people who can't post on metafilter)
posted by Cozybee at 11:02 AM on March 26, 2016 [3 favorites]


As someone who has a friend with a son with the body of a 16 year old and the mind of a 3 year old, who is frequently in danger of injury when he has a temper tantrum, I know I am not competent to judge these issues. It's so rare to even acknowledge that people with such profound disabilities exist because our solution is mostly to house them away from the rest of society. We have as a society recognized that institutionalizing people for their entire life in impersonal prisons is possibly not the best solution, but that leaves parents with immense burdens.
posted by threeturtles at 3:36 AM on March 28, 2016 [3 favorites]


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