Monday, March 28, 2016

Do parents have the right to stunt the growth of children with severe disabilities?


"I can't imagine the emotion, physical, and spiritual strength of the families [who] have to make these choices," read the comment. That was one reaction to the article in this week's New York Times Magazine about parents who chemically stunt the growth of children with severe disabilities. Selfish, abusive, barbaric, sickening: Those were other reactions, words that came from parents of children with disabilities. Meanwhile, adults with disability were outraged. "The humanity of disabled people is apparently secondary to the convenience of those around us," tweeted Lei Wiley-Mydske.

The article, Small Comfort, is by Genevieve Field, a colleague from my days as an editor at Glamour magazine. It's a complex topic, and I found her piece to be lucidly written, thought-provoking and disturbing. Adults in the disability community rightfully noted that people with disability should have been quoted; it seemed like the editors wished to focus more on families who supported the treatment than on philosophical discussions (per an author Q&A on Digg).

I'll attempt a summary: A small but growing number of parents of kids with severe disabilities are opting for growth-attenuation therapy. It consists of administering estrogen estradiol (done via injection, I believe), which speeds up the rate of skeletal maturation and drastically reduces a child's adult height. The younger a kid is when treatment starts—typically between ages 3 and 6—the shorter they'll end up. The children it is being done on are nonambulatory, with considerable intellectual disability.

Parents who have done the therapy said they didn't know how they would hold, lift, bathe and otherwise handle their children once they grew older. Additionally, they believed that keeping their children's height in check would allow them to continue to participate in family activities, outings and daily life as they get older.

The treatment first came to public attention in 2006, when JAMA Pediatrics published a case study  about a six-year-old girl who got GAD, along with a hysterectomy; her breast nodules were also removed. The parents of Ashley X, as she became known, started the website Pillow Angel to bring attention to the topic and offer parents a private forum for discussion. Now a teen, Ashley still has the cognition of an infant, her dad told The Guardian, along with the height and weight of a 9-year-old.

Adults with disability, advocates and others are horrified by the violation of the rights and freedom of persons with disability (PWD), and unnecessary bodily manipulation by a guardian. They note that laws were fought for, by families and the disability community alike, to stop the mistreatment and abuse of PWD. Alice Wong of the Disability Visibility Project tweeted, among other critiques, the need for more services and supports so parents wouldn't feel alone in raising a child with severe disability (although you can understand why the possibility of that down the road wouldn't matter much to a parent grappling with the decision now). The Director of Policy Rights at The Arc wrote, in response to the piece, "The decision making process, outlined in this piece, is based on the needs and desires of the caregivers, and completely removes the voice and rights of a child with disability." Also troubling: There is no research on long-term effects of the treatment, and whether a smaller person receives better care.

Some point out that while the thought of caring for an older child with disabilities may seem seem overwhelming, circumstances can change. Genevieve interviewed Eva Kittay, a professor of philosophy who has a fortysomething child with cognitive and physical disabilities. Kittay spoke of the balance they now have, with her daughter in a residential school during the weekdays and at home on weekends. "You cannot halt things, keep them children," Kittay said. "You have to think about your family changing. You will have other needs. They will have other needs."

As the parent of a child with spastic cerebral palsy, I do understand the anxiety about caregiving. Lifting Max into our minivan, dressing him and helping him up when he trips and falls is real physical work—and his CP is considered mild. I can only imagine the challenges faced by parents of children with more severe physical disabilities. I am also not one to cast judgment on other special needs families. We may have commonalities but, ultimately, none of us have walked in the others' shoes. The scathing comments left by some people were disturbing. Most of the families I know do their best to make decisions they feel are right for their families. 

Still, I share some concerns touched on in the piece. As I read, I kept flashing back to Max's early years. At age three, he had started walking but had serious cognitive delays. We could not have known—nor could any expert have known—how that brain of his could and would flourish, scary MRI scans be damned. Raising Max has taught me to presume competence, a tenet that growth attenuation violates. 

Who's to say that a child with low cognitive function—the kind who this treatment is recommended for—won't progress? Who's to say what thoughts, wishes and desires circulate in the mind of a child who can't yet communicate them, yet being the operative word? Who's to say whether such a child could end up feeling like a prisoner in a body forced on her, much as people with intellectual disability may have felt decades ago when they were institutionalized?

I considered how this treatment could affect the way others view a person with disability. As it is, people often talk down to people with disability; I regularly see this with Max. It frustrates me when others address him in a baby-ish tone. Worse is when they talk about him as if he isn't even there. A person with disability who is made to always resemble a child will likely always be treated like one, no matter how they mature inside.

I thought, too, about the possibilities that technology may bring in assisting with caregiving for a person with severe disability. I've been amazed at the augmentative communication options that have cropped up in recent years; coming up, an app that will translate impaired speech. True, it's one thing to create a speech app and another to create a robot who could assist with dressing, carrying and lifting a person, but I'll bet that will happen. I've read, for instance, about robots being tested to do tasks including shaving and folding the laundry for people with disabilities. 

And then, I wondered and worried about the variety of parents considering the treatment. Over the years, I've encountered parents with a pretty old-school mindset about children with special needs. Why should a person who considers a child with disability to be someone who can't make contributions to the world, someone they consider a defective human being, be allowed to decide that child's fate? In who's best interest is this treatment, then?

Screen shot: Twitter/@nytimes

24 comments:

  1. I've thought a lot about this over the last few months. I can see the reasoning in it. My daughter's birth defect has allowed us t o be a part of a facebook mommy group filled with parents caring for like children, and most of them never have independent mobility, and for those parents that will be always carrying and moving and lifting, and doing everything for their children, for their sake, I can see the value in doing it. I'm very small and my daughter is very tall, and I've thought about this as she gets older what we would do. Right now she is crawling, and we hope and pray that she does walk so that it wouldn't come to this, but this is definitely an issue that's on our radar. I can't wait to read about what other parents say in the comments.

    Paige
    http://thehappyflammily.com

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  2. I find the procedure disturbing and plain wrong. That doesn't mean caregivers should make things harder on themselves, but changing a child's body for their own convenience just rubs me in the wrong way. If there were a transfer feature or similar on equipment, that would be great. I also think the "pillow angels" name is weird. I don't see how "pillow" or "angel" applies in these cases. Does it imply that angelic passivity is the only intrinsic value in these kids?

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  3. Unequivocally, 100% wrong. It is wrong to subject kids to100% unnecessary, painful, invasive and irreversible medical procedures for the convenience of their parents/caregivers!

    All else aside, it's REALLY difficult to evaluate the intelligence of a kid with limited abilities to communicate. Just because a kid's expressive language is limited, doesn't mean they don't understand things!

    - signed a mom who's kid's BFF is a non-verbal kindergarten classmate who uses an iPad "talker".

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  4. Even leaving aside the ethics (lack thereof in my opinion), practically this does not 'solve' anything. The kids may not change this way, but the parents still will! A 60 y/o, 70 y/o will struggle to dress, and lift a 9 y/o, heck even a 5 y/o, even with mechanical aids. Nature does not allow us to take care of children or disabled adults forever. And what happens when her parents die?

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  5. The Ashley Treatment occurred about 30 miles from me, and at the time, it was controversial, and unethical, but it is legal. It uses a older SCOTUS court ruling that serves a different purpose, to sterilize the person, making them unable to have children. Buck V Bell, the particular case is a eugenic issue that was used in 1927 to do its deed.

    This issue uses a very similar procedure (which also sterilizes the person) to force the body to age prematurely so the growth hormones and sex hormones the body produces don't take affect.

    I was sterilized at 21, partly due to the eugenic movement, but also to cure an infection that was allowed to spread. I also know, from experience that there are health problems that easily arise from such procedure. Depression (both male and females have this when no hormones are present), lack of energy, osteoporosis, thyroid and other health issues come to mind. Fortunately, I now have a testosterone therapy plan where I have a patch that is used to raise T levels to a level that is acceptable.

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  6. I have a friend struggling with this now. She is a deeply thoughtful and empathetic person, and this is an agonizing decision. Making sweeping statements about other people's lives and choices, based on your own emotional responses and little knowledge of up-to-date medicine or the specifics of other people's situations, is wrong. I'd think that parents who've been on the receiving end of other people's ill-informed judgment (which is, let's be honest, ALL OF US) would be more wary about judging others.

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    1. I have been disturbed by some of the scathing, judgmental comments left on the NYT site.

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    2. lot of the comments on the NYT article may sound judgmenis, as the whole issue is controversial. Ashley had her procedure done in Seattle, which is 30 miles from me, and I remember how rough it got.

      I also realize that the procedures are to make it easier, but historically, the procedures go back to the issues that were of the best interest of society.

      Long term health issues are unknown for growth stunting, where premature closing of growth plates in bones are done, but it also goes back to the original purpose of the procedures, which at one time was sterilization of people.

      Personally, I prefer to leave the body alone and let nature take its course in how the body gets older. I never liked the idea of surgical sterilization out of convenience of others. My mom was a staunch supporter of eugenics, which is a precursor to this, and similar issues as this can come up, since the same procedures are used, but are done at different times of the person. Growth stunting is done when the child is very young, where sterilization is usually after puberty, with the same kind of procedures done for both.

      I also think there are alternatives to this, with assistive devices for lifting, which can be installed in the home and bathrooms. Track lifts, Hoyer lifts, are 2 common devices that are available. What I don't see much is assistants being used, which states refuse to pay for.

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    1. Having a child who is total care, I can see both sides. And yes, I even approached doctors about ways to put off puberty and stunt her growth (which we never did after discussing at length benefits vs risks). I love my daughter more than words can say and wouldn't trade her for the world but my health is a mess thanks to cancer (that I no longer have but left it's mark on my overall health) and I have two other children who need me as well. And until you do have a child that will never be able to care for themselves, then you have no idea the physical toll it takes (not to mention emotional). Passing judgement on other special needs parents is an issue I see quite often and one that needs to stop. We ALL love and adore our kids and are only doing what we think would be best for them. Frankly, I find the lack of understanding on why parents would feel so desperate disturbing.

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    2. I agree. Unless someone has literally walked in the shoes of those parents whose children are total care I find their judgments hard to take. What ever happened to empathy? Its not just to benefit the caregiver. If I can save my child from the pain of a monthly cycle that she cannot understand or if that cycle brings on seizures I would do it. I hold no judgment towards those that are considering it or who have had it done.
      Those who say it only benefits the caregiver are short sighted.

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  8. As a mother of a daughter with limited mobility, non-verbal and cognitive impairment, I have struggled with some of these issues myself. I haven't taken any medical steps myself yet, but I have some understanding of those who have. My sweet girl has made remarkable progress, and I can see her walking and communicating better one day, but she will never be able to fully care for herself. Because of this, I am strongly considering a procedure to keep her from having periods when the time comes. I believe it is called ablation, and I started thinking about it a couple of years ago when our local newspaper ran a story of a severely disabled woman who was raped by a caregiver, and became pregnant. By the time the pregnancy was discovered, it was too late for abortion, and the poor woman was confused and traumatized by the situation. I pray this never happens to my daughter, but given her limitations, I feel I may need to take steps to protect her from such an outcome. While I can't condone these more radical procedures, I do understand the struggles of a parent trying to do his/her best. Perhaps with greater support for families of the most severely disabled this "option" to stunt growth won't feel so necessary.

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    1. It is my understanding that an ablation would put a person at greater risk if, heaven forbid, rape was committed and a pregnancy resulted. The ablation destroys the lining of the uterus, but implantation can occur ectopically, or in the muscle. This can be life-threatening.

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  9. I am not as judgmental as I was back when Ashely X's growth attenuation started. Even so, the thing is, this treatment is irreversible, whereas like you say technology will progress. So will these children, no matter how severely disabled they are. Often, it is presumed that if you have very severe physical disabilities as an infant, you'll have cognitive disabilities too because your body can't help you learn. That's what I read about severe CP at least and there are many people who disprove this. Yet we shouldn't have to prove as adults that we aren't childre. I often recommend people read Cal Montgomery's "Critic of the Dawn", a piece in Ragged Edge Magazine written in about 2000 as a response ot another article dhumanizing children with severe cognitive and physical limitations. Montgomery shows the dichotomy of presuming competence that is so often present iwhtin the disability community: that if you can prove yu're non-disabled enough, you're awarded rihgts, yet those who can't prove competence (yet), like Ashley X, are stll dehumanized. I experienced this at some level when I was threatened with forced institutionalization in 2008.

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  10. I will say that because it has to be done so early in a child's life, you don't know how they will develop as they grow.

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  11. Interesting NYT article--some of the comments to the article are very appalling and insensitive
    If a person is disabled they may speak from their own point of view but if they are able to type responses on their computer, they are not the group targeted for this intervention
    Unless the disabled party is also the parent of a disabled child they really are not qualified to speak on this subject
    No one except me and my husband know what it is like to be Addie's parent
    Addie by virtue of her renal disease is small and can be lifted and held fairly easily--she is not so easy to transport due to the supplies/equipment needed
    Parents of children with special needs make the best decisions they can for their child/families and deserve to be supported
    Regarding the term pillow angel, it reminds of the term forever child

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  12. To be frank, I'm worried that quasi-pedophiles (people who would abusively target children, but target the disabled instead because of the level infantilization they experience + the potential for a lifelong victim) would be even more attracted to people who have this procedure done.

    Also, as to the comment above mine, parents of disabled children need to realize that the people who've found a way to communicate on the computer--not all of whom speak or type using traditional methods--is probably the closest they'll get to getting their childrens' perspective for the time being. "You are nothing like my child" is often used as a method to silence us. Perhaps it's time that parents sit down and listen to us, instead.

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  13. As a young adult with a CP, I find myself struggling with my views on this topic.

    On one hand, I knew plenty of kids growing up who had disabilities far worse than I did - some with severe intellectual disabilities. I see them around town every so often and I can tell that as they have aged, their quality of life has plummeted as they have gone through puberty. Some already need to be in care homes and can only see their parents every so often simply because their parents can no longer physically take care of them. If they were physically smaller, maybe their parents could take care of them for longer, bring them on outings, etc.. No, no parent can take care of a disabled child as the parent gets into their 60s or 70s, but 20 or 30 more years at home with their parents would mean the world to some of these people (and their parents).

    However, on the flip side, it is hard to tell if a child is not going to improve at all at like 3 years old. There is NO WAY my parents could have predicted that I would be completely independent as an adult when I was 3 years old. Educated guesses are not something to be relied on. Not to mention the fact that such procedures could be done solely for the care-taker's benefit and not the child's. It also perpetuates the idea that PWD are merely objects.


    People like myself get up in arms about such topics because it often goes along with ideas of eugenics. Stunting a severely disabled person's growth is a far cry from forced sterilization for people who society would deem "unfit parents", but the world can be irrational and has been.

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  14. I have a friend who had a hysterectomy performed on her child when she reached puberty. Her daughter is severely disabled and the backlash she met was swift and harsh. However letting her daughter suffer through confusing pain and periods was not an option for her. I always say I have enough going on in my own life to ever judge someone elses.

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  15. Hello, I'm Jack in using my friends account. I have Kabuki Syndrome (A rare genetic disorder) as well as dwarfism. I am 4,9 and my growth plates are defected so I won't grow anymore. Honestly I dont like it sometimes but I have fairly good mobility but I understand that not everyone has that and it may be hard for caregivers. It still is disturbing though.

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  16. My question is, why limit to only children with "severe cognitive impairments" as well as physical? I mean, the issues of lifting are the same regardless of cognitive ability, right? So why does everyone cringe at the idea of doing this procedure to a child who fully understands? Such a double standard. My child is 7 years old, he's already 4 feet tall and 60 pounds. He has quad spastic CP, uses a wheelchair, and will most likely never walk, crawl, or get around with out full assistance. Yet we expect he will live a fairly independent life. And even if he couldn't, we would not consider something like this, not just because he has such high cognition, but because we don't feel we have the right to make these decisions for him.

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  17. My youngest has CP, Autism, Stroke Survivor, Hydrocephalus, legally blind etc. The list goes on and on. She needs us to put in a lot of physically demanding labor to care for her. I have slipped disks in my back, as well as radial tunnel on my left side from all the lifting/carrying. She's only a little kid, so I worry a bit about what this will look like when she's an adult.

    That being said, I don't think that justifies making permanent, dehumanizing changes to your kids without their consent. They aren't designer pets that we can breed into the right form we require to make our lives more convenient. Ethically, I just don't agree with this practice.

    Practically? I totally get that there seems to be no solution for parents with older, high-needs children. Which is why many are making this decision, they feel like they have no other choices.

    What I wish would happen? Is that there was more funding/resources available for competent, compassionate respite care and home health aides. I would love to be able to hire a younger, stronger individual to help shower, change my daughter under my watchful eye when I get too elderly to do so. But I know that between costs and potential for abuse, this isn't an option for everyone.

    Maybe if we put more energy into making that sort of care available, parents wouldn't feel like they had to make such drastic calls to ensure they could continue to care for their kids.

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  18. Dana Linett-SilberApril 11, 2016 at 7:20 AM

    This is about desperation, unrealistic expectations and a lack of adequate support for parents of disabled children. My disabled son lives in a group home with several young strong aides at his beck and call 24/7 and has actually been given a growth hormone because his damaged brain was not properly producing it. I was on the fence about this and eventually stopped it but the issue was never about whether or not able-bodied people would always be there to take care of him. We are very lucky and I empathize with all the parents out there who, because of stigma and/or lack of resources, haven't been able to secure the same level of care for their kids. It is unreasonable for parents to feel they have to do the physical part of caring for their severely disabled children for life. Hence these drastic, seemingly insane measures.

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Thanks for sharing!



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