They were mildly mentally disabled, and probably couldn’t have been separated with current technology without leaving both of them physically disabled.
It sounds like they still managed to lead happy lives.
Is that true, or was it a lack of education? The twins never went to school, what education they had would have been rather piecemeal.
It wasn’t uncommon in those days (and even later days) to automatically physically disabled babies as “mentally retarded” too, based on little or no evidence other than being physically different. You start to wonder if it’s a self-fulfilling prophecy, as back in those days less effort was expended on educating those presumed unable to keep up, as opposed to today when there’s a notion of putting more effort into people to bring them up to speed.
I saw them interviewed. They were indeed (let’s call it what it is) mildly mentally retarded.
I’ve worked with people who were MMR, back in the 1990s, which was the last that it was OK to use the term “mentally retarded” in the professional world.
“Mildly” mentally retarded was still pretty high functioning. Lots of MMR people live independently, marry, have children, obtain high school diplomas (real ones, not “certificates of completion”-- usually in more than four years, but they do it). I know a few who have gotten AA degrees, albeit, in more than two years, because they can’t handle a full classload, and do require tutors, but they really master the material. They hold down jobs, some even full-time.
One of my friends in high school had Down Syndrome, but was very mildly affected, and she graduated. She took two resource classes a day, and just the bare core curriculum required, but she did it, and in four years (she took a couple of summer school classes too). She was very thoughtful, and loved going to movies with the rest of use, had hobbies, and really enjoys cooking.
But there was no mistaking that despite the fact that her personality was well-developed, she was very capable of self-care, and had great social skills, she still had deficits.
That’s why a designation like “mild mental retardation” was very useful. Everyone in the field knew what to expect when you were meeting someone with that diagnosis.
I hate that we can’t use the term “mentally retarded” because a bunch of jerks have to use anything they can to be hurtful.
Anyway, RIP the Galyon brothers. I’ve seen them interviewed too. They did pretty well for themselves. Their parents allowed them to be exhibited, but someone, somewhere (it could have been their parents, I really don’t know) looked out for their future, and saved much of the money they made, IIRC. They had a better story than a lot of child actors, or the Dionne quintuplets.
“Borderline intellectual functioning” also applies in some cases like this.
Back in the days when freak shows were a thing and it was almost impossible for the severely different to get work some of the performers/exhibits actually did well financially (some, of course, were financially exploited). The Galyons were on the tail end of that. As I recall, their father went with them when they were touring and watched out for them. Once the boys were adult and retired from the business they were largely set for life and didn’t have to work. Having the support of their family probably helped a lot, too, especially as they got older and less capable.
The system could be brutal, but it wasn’t all bad - not sure our current system doling out a pittance to the disabled is any better, just different.
I have worked in the thick of the disability world, and yup.
The current system takes away a lot of self-determination that people like the Galyons were able to maintain. But it serves people who couldn’t “be served,” as it were, under the old “system.”
Of course, if they were born today, they’d probably be separated.
You have to wonder about radical choices made for people when they are too young to participate.
The Hensel sisters (conjoined twins who are not separated, and are about 28 right now) insist they would not want to be separated. Intersexed people whose parents chose assignment surgery for them when they were babies are almost to a person, not happy about it, and most people I know with cochlear implants who got them as babies and toddlers wish the choice had not been imposed on them. On the last one, there’s a bias, in that I know mostly people who went on the be primarily ASL users, because their implants failed to give them usable hearing-- but statistically, the majority of people implanted who never experienced normal hearing, never learn to function as hearing people.
I guess that’s really another thread, though. I shouldn’t derail this one.
I’m not sure it would even be possible to separate the Hensels - they each only have half a rib cage, half a pelvis, two of their lungs are partially fused, only one diaphragm between the two of them, only one liver between them, only one set of intestines, one bladder, one set of reproductive organs… not to mention they’d be left with only one arm and one leg each. Their parents thought they’d be less impaired left together than attempting to separate them, which would involve at least one of them getting multiple organ transplants, all sorts of issues with having just half a ribcage each, and no way to fit them for prostheses for their missing limbs because there’d be nothing to support the devices. Thank Og those two WEREN’T subjected to an attempted separation.
I get the sense that a lot of that surgery was done more for cosmetic reasons than to actually preserve function. Yeah, I’d be unhappy, too.
The cochlear implant thing is a tough one - past puberty the brain won’t really learn to use one well unless the person had hearing up until that point so in a severely hearing impaired person someone has to make the choice for the kid before that point, before the kid is actually an adult. You get maximum benefit getting them as an infant or toddler, during the initial language acquisition period.
I don’t really know anyone directly who got them as children, but I did work for a health insurance company for over a decade and while the company would pay for a cochlear implant where there was some reason to believe the patient would benefit there was a constant problem with hearing parents thinking that they would magically give their kid normal hearing (no, they don’t - they can give some people useful hearing, but it’s not normal hearing) and getting very upset being told “no, for reasons X, Y, and Z your child will not benefit from this, we will not approve it”. I think there is resistance to the notion that no, your child is not “fixable” and you need to look into things like ASL, deaf education, assistive aids, and so on.
Even if there are no apparent contra-indications cochlear implants do not always work, whether they’re being put into kids or adults.
Sorry, it’s a bit of a soapbox for me, too.
But the Galyon’s show that it’s possible to have a good life even if you’re not normal.
I didn’t mean to imply that the Hensels could be separated-- I just meant that they have stated that they are glad not to be, for whatever reason.
Some intersexed people had a physical, or “appearance” sex chosen for them, sometimes based on what a doctor said would be easier to construct convincingly from what existed, and sometimes, less often, but sometimes, based on what the parents wanted. After puberty (and often before, but no one listened), the person felt the wrong choice had been made. By then, it was a lot less “fixable.”
Cochlear implants were designed for adult hearing people who lost their hearing. When that market was saturated, doctors turned to born-Deaf babies. But they don’t know how to hear, and the implants just don’t “take” as well. They also destroy any residual hearing a person has, which is the main reason they are counter-indicated in anyone. If you can hear at all through a hearing aid, you don’t want to destroy that hearing.
Also, hearing aid technology is constantly improving, and you can always take advantage of the newest technology. Cochlear implant technology changes too, but once you have the implant, you are stuck with the hardware. A person who becomes Deaf at age 65 may have the implant for 20 years. A baby may have it for 85. Imagine that baby as a middle-aged person stuck with vintage hardware. He might have an age-mate with the very newest hearing aid, that does things no one dreamed of 45 years ago.
But aside from all that, there’s just nothing wrong with being Deaf.
Again, I don’t want to derail this.
If anyone wants a thread about disability technology, I’ll start one, though, and participate.
It seems at least two of us want one, so go ahead!
From what I’ve read, cochlear implants are most useful for people who lost their hearing after they acquired speech, although they say that the hearing they have could best be described as pixellated. For that matter, I’ve heard similar things from people who have hearing aids.
The Hensels CANNOT be separated. Separating the Galyons would have left them even more disabled, because while they had two complete upper and lower bodies, they shared a bladder, rectum, and genitalia. Here’s a You Tube channel from a family in the Pacific Northwest whose daughters COULD be separated, but they are healthy now (although one appears to be - guess what? - hearing impaired, if not outright deaf) and they see no reason to do it.
Here’s a link to a story about Frank Lentini (1889-1966) whose picture pops up occasionally on social media, and made a hiccup in the news in the 1990s when some college students started a band called “Kill Frank Lentini” and his grandchildren let them know that they weren’t happy about this.
Towards the end of his life, he was informed that medical science had advanced to the point where the extra leg, etc. could be removed, and he didn’t want it done.
I also agree that intersex people should not have “the surgery” unless they really do have a problem - for instance, a urethra that drains into the vagina. Otherwise, let the child decide what they want done when they’re old enough.
I think when medical science got to the point it could separate conjoined twins there was a rush to do so without asking whether or not doing so was in the best interests of the patients. People like the Galyons and Hensels would seem to indicate that sometimes the twins are better off joined than not.
And if later on in life the twins themselves wish to take the risk then they can do so, as these two women did:
Unfortunately Ladan and Laleh did not survive their surgery. But at least the decision to have such risky surgery was their choice, not someone else’s.
Well, yeah, because…their brains don’t have any experience in interpreting sound—and nothing to compare the digitized input they’re getting to—so they CAN’T “know how to hear.” Yet.
On the other hand, all the reports I’ve ever seen also say it’s easier for a born-deaf patient to adapt and learn to use a cochlear implant the younger they get the implant. Neural plasticity, and all that.
As they say in Mother Russia, “‘perfection’ is enemy of ‘good enough.’”
Also, that Middle-Aged person getting a Cochlear Implant for the first time has now got a 45 year late start in learning to interpret an entirely new form of sensory information. And a Neuroplasticity disadvantage compared to a young person in the same situation, at that.
Sure. Unless you, like, want to use radio voice communications well enough to get a commercial pilot’s licence.
Again, going back to my days in the Evil Insurance Empire, which like a stopped clock was occasionally right…
The official policy was to pay for ONE cochlear implant in a child for largely the reasons you outline: if it didn’t work there was still the opportunity to try again later with new technology. And if it did work, there was still the opportunity to get a better implant in the other ear later.
Again, sometimes the problem seemed to be the parents. Had one set of hearing parents that spent YEARS lobbying for an exception to that rule. Apparently, they weren’t happy with how well the Little Darling’s speech skills were coming along and they thought that doing LD’s other ear would improve things. Based on peer-reviewed research, yeah, probably… by something like 2-5% improvement in speech skills. The insurance review board didn’t think that was worth the money (primarily) but also not worth the risks of surgery for such meager gains.
Of course, I had no say in any of what was going on, but I couldn’t help looking at the situation and shaking my head at the parents. Sorry, folks, but a CI is NOT going to give anyone perfect hearing, or normal hearing, at current tech levels. Sorry your child, born deaf, is still struggling to master speech. It’s because they still can’t hear very well. Give the kid a second CI right now you won’t see much if any improvement AND destroy the kid’s chances of better technology coming along in a decade or two
CI’s are not like LASIK or cataract surgery, restoring a sense to near-normal. They’re more like seeing eye dogs - a blind person with a trained dog can navigate the world better and more safely, but the person is still blind. A person with CI can navigate the world of sound better than without, but they’re still (at best) hard of hearing when the device is on and deaf when it’s not.
Also, it’s not just a matter of “saturated” market - brain plasticity is greatest in early childhood, and that’s when the brain is most likely to best adapt to something like a CI. There’s not much point to putting a CI into someone who was born deaf and whose brain never learned to process sound much, if at all (in fact, the brain tends to re-assign those bits to doing other things over time). The person might perceive sound but the brain just won’t know what to do with it and they will not be able to interpret speech with it. About the only reason for giving someone born deaf a CI in adulthood would be a situation where they’re also blind and restoring any sensory input would be helpful and make a difference. Even there, it’s debatable if the gains are worth the risk.
Again, there’s a parallel with people blind from a young age whose sight is restored in adulthood (Oliver Sachs wrote an essay about one such person, “To See and Not See”). Yes, they will be able to perceive images, but their brain will not know what to do with that perception.
All of this gets back to a certain worship of The Normal. Many, many people have been subjected to a lot of well-intentioned misery by parents and doctors striving to make normal what either never was or will never again be normal. Some people are not normal and never will be normal. I don’t think the answer is to continually struggle towards an unachievable goal but to find a way for these folks to live a good life on their own terms.
You actually CAN get a commercial pilot’s license even if you’re completely deaf. The next obstacle is that it would be a limited commercial license and you’d be flying crop dusters or maybe transporting goods and people in a remote location in some place like backwoods Alaska. You could be a commercial pilot but the lucrative jobs like airline pilot would be out of reach.
I’m glad things worked out for the young man, but holding up a success story doesn’t always help those for whom a CI doesn’t work as well, or even at all. It’s a bit of a Hallmark Movie treatment of disability. Not everyone is going to have equally good results.
Back to the conjoined twin issue - for everyone pair that is successfully separated with minimal consequences there’s at least one other pair for whom such surgery is a disaster and the kids are arguably worse off than before. Or one or both are dead. I think there needs to less assumption that separation is always better and more looking at what is really best for the two people who have to live with the consequences of extreme surgery.
Exactly.
That actually seems to be what the Galyans’ parents did, within the limits of the time when they were born. They might have made different choices this century.
I like how normal in mind the Hensels girls (well, women now) appear in interviews. They seem very emotionally stable-- even more so than a lot of normal-in-body people. I know only what I have seen in the media, but I get the sense that their parents did a very good job in a situation without much precedent to learn from.
Otherwise referred to as “inspiration porn.” I love that term.