So I'm dressing as Captain Hook for Halloween (...) but decided I shouldn't do the hook part cos it didn't sit right with me personally given that it's a... prosthetic, and people still v much use hooks as hand prostheses [link] (goblin gay @inkyswampboy, Oct 21, 2019)
Placing aggressive or other stereotypically negative mental images in the minds of non-disabled people has a proven destructive effect on people with a handicap.
One of these issues is the regurgitation of the "Captain Hook" metaphor and its effect for amputee kids (and even adults!) to not wear split hooks - despite a clear overall superiority of body-powered split hooks over any other option. The initial problem seems to be that non-disabled people are sufficiently insecure by themselves, even without the added bashing of disabled people that is introduced by perseverating negative stereotypes [link]. However, the perpetuation of modern wild and crazy continuations of that same concept is not better than the perpetuation of the old myths ever was [link] [link].
To be clear on this: the wilful derision, the planned bullying of people wearing split hooks is unworthy of anyone in modern society. Such attempts of misguided bullying are at the level of social rules which may be encountered in a trailer park or such but they are a very bad idea, to begin with. A full list of facts is given below, but not only are split hooks extremely useful for ADL, they also remedy asymmetry and overuse very well and they are quite affordable. None of that is even closely true for "bionic" hands - in fact, it is worse: if you actually recommend a "bionic" arm against better knowledge, it automatically makes you fail the Voight-Kampff test, placing you next to soul-less robots on an empathy scale [link]. So it is quite perfectly clear, that we now will have to look closely at just who goes out to be verbally destructive in distributing the "split hook being bad" for reasons rooted in a peculiar fairy tale. Just because it was there, as an arcane metaphor, does not mean it was just such a great idea to pick it up to pick on us, now, was it.
After all, these people are destroying realities for arm amputees by distributing evil myths and fairy-tales, or, more bluntly put, by manipulating and lying, in a fashion that the public view on things can make it very hard for amputees to really go and wear split hooks. The reason there is that so many people hardly ever meet an actual arm amputee, but many are inundated with these negative stereotypes, that more people write about Captain Hook than actually consider arm amputees. So our public image is very much defined over what is circulated as negative stereotypes.
But treating people by attributing them to a general "evil class", such as labeling people wearing a prosthetic split-hook as "Captain Hook" not only shows a really bad attitude. It also shows a high degree of absent etiquette, absent factual and technical know-how (as the metaphor-related assumptions are, in themselves, factually wrong: prosthetic hooks are in many ways extremely good, not bad) - even worse: the metaphor itself is fucked up. The naive view goes that Peter Pan "is good" and Captain Hook "is evil". But it does not end there, not really because Peter Pan and Captain Hook are no simple fairy tale figures. In other words, people that use the Captain Hook metaphor show bad taste, bad manners, but they also use at least two orders of mistaken content: the first-order error is the widely wrong content with regard to prostheses, and the second-order error goes deeper - it is the use of a metaphor that in itself is a wrong representation of evil aspects in itself1.
- The Captain Hook metaphor as it is connected to modern prosthetic split-hook devices
- Source of nonsensical references: Promembro Swiss association to "legalise" high tech prostheses for leg amputees using Captain Hook metaphor to avoid arguments
- Source of nonsensical references: young inexperienced or otherwise confused reporter
- Source of nonsensical references: male stake holder in "bionic" research
- Source of nonsensical references: amputees posing as poster boys for prosthetic companies:
- What does the Captain Hook and Peter Pan meme actually represent and stand for?
- Boomers Beefcake and Bonding
- 7 Dark Secrets About the Real Peter Pan — Revealed
- Just how bad was Peter Pan author and playwright J.M. Barrie?
- 1. Barrie stole his own “lost boys”
- 2. Barrie’s unusually close relationship with Michael and George
- 3. Letter with creepy candle reference
- 4. Barrie was not good with the ladies
- 5. George died on the battlefield
- 6. Michael’s possible suicide pact with his gay lover
- 7. Peter’s suicide
- How the fantasy of Peter Pan turned sinister
- Summary of what the Captain Hook meme really means
- The actual damage that negative Captain Hook stereotypes do to arm amputees by vilifying prosthetic limbs
- Addressing associated factually wrong information
- Wrong: Swiss promoters that fear of Captain Hook-like prostheses claim that they cannot get newly developed technology as insurance would not cover that.
- Wrong: Swiss promoters of a fear of Captain Hook-like prostheses claim that current Swiss law allows insurance to prevent new technologies for prostheses so they would have to be paid.
- Wrong: prosthetic split-hooks are alleged to convey an absence of feeling (Eric Fein)
- Wrong: prosthetic split-hooks are alleged to represent an absence of advancement, progress (Geoffrey Ling [link])
- Wrong: prosthetic split-hooks are alleged to be heavy or dead weight - Priya Ganapati [twitter], dead weight (Eric Fein)
- Wrong: prosthetic split-hooks are allegedly "old" or "outdated"
- Facts and considerations
- You are what you wear - to a degree - so choose very carefully!
- Body-powered split-hooks are extremely fast, more modern than hand devices, have by far the better precision grip, have a far lower error rate than myoelectric arms, and effectively reduce or avoid problems of asymmetry and overuse, they are not bulky and they are very light weight-wise
The Captain Hook metaphor as it is connected to modern prosthetic split-hook devices
"Giving disabilities to villainous characters reflects and reinforces, albeit in exaggerated fashion, three common prejudices against handicapped people; disability is a punishment for evil; disabled people are embittered by their “fate”; disabled people resent the nondisabled and would, if they could, destroy them," —Paul Longmore ---- As the author Jack A. Nelson states in his article “Broken Images: Portrayals of Those with Disabilities in American Media,” people with disability are often seen in media as a villain. “The image of threatening, evil character who also has a prominent disability,” Nelson states and he goes onto specifically mention the prevalence a deformity of the body in villainous characters (Nelson, 5). One of such characters includes Captain Hook in the Disney 1953 release of Peter Pan. The dominate storyline in this film is because Peter Pan has chopped Captain Hook’s hand off, the hooked- man will endlessly seek revenge and kill the boy wonder— Peter Pan. Disney’s main depiction Captain Hook is one of an amputee. The main focus on Hook’s identity is as a hooked man. As a character, Captain Hook is driven by this notion that he is a crippled man and thus leaving children to believe this is a negative condition of life. The audience is not given the opportunity to see Captain Hook’s character before his disability. “Disney animators, unfortunately, accentuate Hook’s prosthesis at every turn; indeed, there are very few shots of the captain in which the hook is not conspicuous, as he often uses to mete out punishment or simply brandishes it as a threat,” (Norden 216). We don’t know whether he was “evil” before this incident with Peter Pan, or if his amputated hand is truly the root of his evil. By painting Captain Hook as a single-dimensional character, children are forced to assume that Captain Hook is evil because of his hook! It does not help that Disney makes Captain Hook out to like a crazy person. He literally goes insane by the end of the film. In the ending sequence, Captain Hook’s eyes being to spin, he turns bright red with anger and his body convulses as Peter Pan defeats him. Disney portrays going “mad” as negative, a result of defeat. Disney also shines a negative light on having a disability in general. Captain Hook uses the fact that he has a disability as the sole reasoning for seeking revenge on Peter Pan. Hook is dissatisfied with his life as an amputee and is unable to cope with it. As Jack Nelson defines in his article, “persons are bitter and full of self-pity because they have not learned to handle their disability,” (Nelson, 6). As a maladjusted person with a disability, Captain Hook is bitter and self-loathing for merely being a one-handed man. Hook obsesses over defeating Peter Pan, avoiding the possibility of another incident with the crocodile and the fact that he has a hook for a hand. Peter Pan has driven him insane and children watching can only conclude having a disability (like missing a hand) will drive you crazy—-crazy enough to manipulate everyone around you and crazy enough to want to kill.
The excursion continues with this [link]:
Take Captain Hook for example. He exemplifies all three of these “prejudices.” First, his hand was eaten by the crocodile and can be inferred to symbolically represent punishment for being evil. Second, Captain Hook seems to be cognitively affected by the trauma of losing his hand and the handicap and disadvantage of having a hook is subtly hinted at when he fights with Peter Pan. Lastly, Captain Hook seeks to get revenge on Peter Pan and seems to be belligerent toward anyone in his way. It wouldn’t be fair to say that Disney is insensitive to these depictions, but these false notions of people with disabilities are inevitably shaping how we view them.
In a wider sense [link]:
There's an entire subset of villains who seem to have taken Peter Pan's Captain Hook as their hand model: Candyman, Inspector Gadget's Dr Claw, George Kennedy in Charade. Dr. No has metal pincers in place of hands, while Enter the Dragon's Mr. Han has a set of stabby, slicey attachments that wouldn't look out of place dicing vegetables in an industrial kitchen. The fact that, hook or no hook, it might not be cricket to beat up an amputee never seems to occur to the heroes of these movies, nor even to audiences, a notion that reaches its apogee in Robert Harmon's 2004 thriller Highwaymen, in which we're rooting for able-bodied good guy Jim Caviezel against a psycho-killer who has prosthetic limbs and is confined to a wheelchair. (...) Cigarettes having once been considered the epitome of cool, we also see Harold Russell using his metal appendages to light one up near the beginning of William Wyler's multiple Oscar-winning drama The Best Years of Our Lives. Russell, whose hands were replaced by metal hooks after a training accident during World War Two, plays one of a trio of American veterans struggling to fit back into smalltown life after the war. His affecting performance won not one but two Oscars – one for Best Supporting Actor, the other an honorary award for "bringing hope and courage to his fellow veterans". And you can't argue with that.
Source of nonsensical references: Promembro Swiss association to "legalise" high tech prostheses for leg amputees using Captain Hook metaphor to avoid arguments
On their website promembro.ch, they claim "We are the lobby of the prosthesis wearers and create a Swiss network that specializes in the protection of the interests of all of the prosthesis wearers: young people and the elderly, athletes and non-athletes, active and pensioners, the sick and healthy. We represent the concerns of our members in the population as well as in politics and administration. The institutions such as Procap or Pro Infirmis are too big to pay enough attention to the small number of prosthesis wearers."
With that, these individuals sure as hell do not represent all of the prosthesis wearers and definitely not me. They certainly do no represent concerns that I have. When I told them via their Facebook page that their choice of pirate symbolisms was offensive, there was neither an apology nor a nice word. So, that seals it I guess. If they spit down on me, I see no tomorrow for their representation.
They use the pirate metaphor to make solid old principles for prosthetic build look bad and look funny.
All photos made "freely available" on a web link.
So, another example of people that did not manage to stay polite, but to actively spit on body-powered arms and to actively make prosthetic traded technology look bad by use of the pirate metaphor. This appears to be supported by a Mr. Glaettli and a Mr. Golay.
Source of nonsensical references: young inexperienced or otherwise confused reporter
- Sarah Gray [twitter]: "According to “60 Minutes,” before Deka Arm, and others like it that are not yet approved, the standard prosthetic arm hadn’t changed much since WWII, and sometimes involved a Captain Hook-like device." [link]
- Alexis Sobel Fitts [twitter]: "There is a video that made the rounds of medical conferences in 2009. It begins with Fred Downs, a gruff four-time Purple Heart awardee and the head of the Department of Veterans Affairs prosthetic program, demonstrating the hook he’s worn strapped to his left shoulder for the last 40-years, ever since he lost his arm in Vietnam. The hook looks just like you’d expect – the spitting image of Captain Hook’s cruel pirate arm: curved steel screwed to a varnished wood stump. It’s not so bad, explains Downs, as he hooks a soda and drags it across a table toward his real arm. If the hook is a relic of medieval times the next scene flashes straight to the age of enlightenment. Downs has been fitted into the “Luke” arm, a shiny, state-of-the-art mechanical limb (named for Luke Skywalker) that’s been surgically attached to his shoulder, allowing the device to sense the electronic impulses of his remaining nerves and move in concordance." [link]
- D. S. Halacy Jr [bio]: "Advanced-technological prostheses to provide greater physical achievements: Prosthetics have been defined broadly as devices by which humans not only regain abilities they have lost but also to add new "unnatural" abilities. In this sense telescopes, bull horns, and airplanes are prosthetic devices. The term is customarily applied to the applications of artificial limbs. The thought of amputation is repugnant and understandably so. It is instinctive to fear the loss of a limb; this is part of nature's survival mechanism. Mention of an artificial limb in the past made people think of a replacement with a frightening metal hook at its end. Captain Hook, who wielded his sharp prosthetic "hand" as a horrible weapon. Another vicious character in fiction, Long John Silver, got about on a peg leg. It is unfortunate that the connotation of evil has become associated with the artificial arm and leg. Added to our natural squeamishness about such things, it has made acceptance of amputees a difficult thing, and particularly for the handicapped themselves. Electronically powered devices making advances in prostheses: With the sophistication of electronic equipment and devices, it is possible to identify and amplify individual tiny voltages produced in nerves by signals from the brain." [link] (Excerpts from Cyborg: Evolution of the Superman by D.S. Halacy, Jr.; Harper & Row, Publishers, New York, 1965 and from "Great Expectations" by Paul T. Webber, Orthopedic Technology Review, January/February, 2001).
- Undisclosed writer: "Mind-controlled prosthetics are making leaps and bounds in terms of dexterity. Research at the University of Pittsburgh has yielded what's considered the most advanced prosthetic arm control system yet. We've come a long way from Captain Hook with brain implants and prosthesis." [link] (The original Reuters article did not contain the derogatory Captain Hook remark).
- Eric Fein: "No more days of hook hands and dead weight. This (bionic) hand (that can feel) will likely one day be just as functional as a real limb with the added benefit of knowing the difference between a lover’s caress and the crushing force of a Buick parked on top of it." [link]
- Ben Mcgrath [link] [twitter]: "The robotization of humans for medical purposes is in some respects already highly advanced. Cochlear implants replicate hearing through the electrical stimulation of auditory nerves, artificial retinas promise to undo the effects of blindness, and even automated bladder control for the incontinent is now available, at least in laboratory prototype. Medical researchers have begun to explore the possibility that people can regenerate lost appendages, in the manner of salamanders and starfish, and are harvesting extracellular powder from pigs’ bladders, which may prove useful in growing new human-finger tissue. But when it comes to real locomotive hardware—the stuff of Darth Vader, functionally speaking—we’re still closer to Captain Hook than to RoboCop." [link]
- Lara Salahi [link] (homepage) in an article titled "Prosthetic Hand: More Amputees Proud to Wear Artificial Limbs:: (...) "First you think of the hook, like Captain Hook. But I was shown an articulated hand, so that gave me hope" (...).
Source of nonsensical references: male stake holder in "bionic" research
- Geoffrey Ling [link]: " “Upper extremity limb replacement has not really progressed since the days of Captain Hook,” quote by Colonel Geoffrey Ling of DARPA’s Defense Science department told Weill Cornell Medicine." [link]
- Priya Ganapati [twitter], about Dean Kamen [link]: "But prosthetic arms still call to mind stiff, heavy chunks of plastic — barely one step up from Captain Hook’s creepy iron claw. “Prosthetic legs are in the 21st century,” Dean Kamen recently told the trade publication IEEE Spectrum. “With prosthetic arms, we’re in the Flintstones.” Kamen, who invented the Segway, has been working on creating an advanced artificial limb." [link].
- Elaine Trefler, P. & O.T. Reg., BOT [link]: "Let's Put a Hand on Captain Hook" - "We are acknowledging that hooks are not esthetically pleasing. We are now listening more attentively to the comments of parents about their child's prosthesis because we know that if the parent accepts the prosthesis in all likelihood the child will also. We are listening to the complaints of the child who is being called Captain Hook and does not want to return to school." [link]
- In Switzerland, we find an unholy alliance of a person calling himself "Bionic Man" (Michel Fornasier), the spin-off "Swiss Prosthetics", and Wyss, that team up to make split hooks look as there was something evil about hooks. They advertise by stating "With the goal that prosthetic hands for children are more Peter Pan than Captain Hook".
- The Swiss Federal Institute of Technology further emphasised their mental orientation towards fairy-tale based name-calling by titling their Cybathlon-2016 associated exhibition "From Captain Hook to Iron Man" [link]. They had a representative address me twice, to get me to present my prosthetic arm there. The second time it took me 45 minutes to talk that person out of it, and to explain just how ignorant and respectless that was. Sure, I may wear a highly modern, technically advanced prosthesis but it is still a split hook, and as these individuals had tried to put me up on a stand as a pirate, more specifically as the Captain Hook villain, and exhibit me as old shit, I take offense here, thank you very much.
- We find the hope-raising introduction "A classic example of upper limb prostheses can be seen worn by Captain Hook in the childhood story of Peter Pan. Prosthetics have come a long way from simple hooks. Advancements have been made to bringing the hook closer and closer towards the ultimate goal of a full and lifelike replacement for the human hand" in the article by van der Riet, Drew, Riaan Stopforth, Glen Bright, and Olaf Diegel. "An overview and comparison of upper limb prosthetics." In 2013 Africon, pp. 1-8. IEEE, 2013. - In the meantime, none of these authors so far ever made any step closer "towards the ultimate goal of a full and lifelike replacement for the human hand" -. instead, they kept stirring the muddy waters of myoelectric controls
Source of nonsensical references: amputees posing as poster boys for prosthetic companies:
- Damien Gayle [link] writing about Nigel Ackland: "Some people don't understand is how alienating losing a limb can be and how the negative associations we have with hooks. 'When you think of fictional characters with a hook you have Captain Hook - well he's basically a terrorist - with this device people see the future. 'People will stop and say its like I-robot and the terminator, how they associate is half the battle with people understanding prosthetic limbs. 'When you first lose a limb it can take a massive blow to your confidence. 'People in the street don't really know how to react to the fact that you have no arm and as a result you can be left feeling exceptionally withdrawn." [link]
- A product ambassador for Touch Bionics (i-Limb) admitted on his official Touch-Bionics page [http://touchbionics.com/bert-pot]: "Sometimes I tell children I swim in the ocean and got my arm bitten off by a shark and I tell them I’m the brother of captain hook and every time they look very surprised".
- A deeply misguided person by name of Sondra Stieber of Wichita was quoted calling her split-hook "barbaric" and she was cited as "Stieber received a traditional prosthesis, which she describes as a barbaric hook that was inflexible, uncomfortable and could cause sores and infections". While that in itself raises a lot of questions about her and her prosthetic team, a split hook certainly is never uncomfortable, can never be uncomfortable (if anything, they sure cannot build prosthetic sockets there - but the hook just screws on or off at the wrist connector), and thus it most definitely does not in any way contribute to infections, like, at all. Ever. Also, if Ms Stieber prefers to use denigrating slurs to describe her prosthetic arm, it may not be the greatest idea to quote that 1:1 in the newspaper. They also are well advised to not quote other denigrating slurs that people may utter when interviewed. Then, the journalist is called upon to mellow down the statement and to say something like "Ms Whatever had expressed dissatisfaction with her former prosthetic arm". After all, many of us that do deliver real work every day wear a prosthetic split hook, and a society that has their pinnacles of truth and wisdom - journalistsm "the fourth power" - spitting down on us or passing on uneducated denigrating vocabulary to the public is not deserving of such real work. To publish such absolutely pure nonsense shows how Sondra Stieber as well as the journalist, Carrie Rengers, know nothing about prosthetic arms and clearly lack any respect of people that use split hooks to deliver real work3.
- It will be quite easy to extend this list, there are a number of "Bionic Men" that lean into this.
- The amputees that wave their "bionic" arm around as end-all-be-all front end of prosthetic companies usually never disclose that they have a clear and set commercial agenda (key words: ethics, conflict of interest, commercial advertising, brand ambassadors).
What does the Captain Hook and Peter Pan meme actually represent and stand for?
A naive simple assumption - which as we shall see is wrong - is that Peter Pan (for no obvious reason) is "good", and, by role reversal or by Dixit, Captain Hook - the arm amputee and pirate wearing a hook - is "bad". However, a more accurate answer is far more complex and not what you may have assumed it was. Which, in essence, must be why you clicked here, to begin with.
Clearly, no grown-up man nor self-respecting boy would want to ever associate with the character of Peter Pan. Peter Pan seems to be that vague character that never wants to grow up, or that actually ever grows up. The evil of Captain Hook is not the prosthetic hook in itself. It is the fact that the person behind the story is basically an adult man, who wears a disguise or uniform (in the fairy tale, that of a pirate) to approach children with at least uncouth if not criminal intent - embodied, here, in the form of one boy, that is, Peter Pan - is the actually repulsive part. Really, Barrie must have warped his own biography into the complex issue of the evil being disembodied as Captain Hook, within that same fairy tale that he then actually tells in real life in one way or another, in order to lure the actual Llewlyn Davies boys towards him.
And with that, wearing modern prosthetic split-hooks require an truly embodied maturity, a grown-up adult sense of responsibility, an honesty to stand and present oneself without camouflage or costume, a directness to commit to hard work and exposure. None of which the Peter Pan aficionadoes appeared to ever represent.
I selected three texts which appeared to illuminate the truly sad and tragic realities behind Peter Pan, and which may help to understand this very strange tale better.
Boomers Beefcake and Bonding
"I'm fine with drag now, but in 1966, I was freaked out by Mary Martin's portrayal of Peter Pan, a monstrous conflation of male/female and child/adult (Peter is traditionally played by an older woman, in the tradition of the British Christmas pantomime).
Three years later, in 1969, my uncle took me to the theatrical re-release of the Disney version (1953), with 15-year old Bobby Driscoll voicing Peter Pan. Although I was older, I was still freaked out by the dog wearing the nanny cap and the Lost Boys in bear, wolf, and skunk costumes, monstrous conflations of the human and the animal. And the heterosexism, nearly as intense as in the Disney live-action adventures like Light in the Forest with James MacArthur. There's a story about Bobby Driscoll's date with Joe Dallesandro on Tales of West Hollywood.
Peter is subjected to the amorous flirtations of Tinker Bell and the mermaids, all of whom try to kill his current gal pal, Wendy. He goes beyond flirting with Princess Tiger Lily, whose kisses make him redden and tremble with erotic ecstasy. Meanwhile, the Indian men explain how they "became red": they're all reddened with erotic ecstasy after being kissed by Indian women.
Captain Hook, one of Disney's standard gay-vague sophisticated villains, dislikes women and has an arguably erotic interest in Peter Pan. He stays in Neverland year after year, in spite of the advice and near-mutiny of his crew, with only one goal: to "get" the boy. Homoerotic desire is evil, unwholesome, and destructive. Heterosexual desire inflames you. A monstrous perversion of the original novels and plays by J. M. Barrie (who was gay in real life), where Peter Pan inhabits a homoerotic Eden, free from the constraint of "growing up" into heterosexual marriage.
But it gets worse.
In Hook (1991), Robin Williams plays a Peter Pan who grew up, forgot his identity, graduated from law school, and married Wendy's granddaughter. When his children are kidnapped by Captain Hook (Dustin Hoffman), Tinkerbell (Julia Roberts) appears to restore his memory and his powers so he can rescue them. She accomplishes this task by reminding Peter of the hetero-erotic Eden he abandoned: "You know that place between sleep and awake? The place where you still remember dreaming? That's where I'll always love you."
In Peter Pan (2003), Peter (13-year old Jeremy Sumpter) is dressed in wisps of leaves that lay bare unexpected bits of his body, like a prepubescent striptease, as he struts about, emblematic of heterosexual eroticism. He doesn't just flirt -- he desires Wendy, and the stories she tells, which all end with a kiss. He wrests her from her parents ("Sorry, we both can't have her), and their prepubescent passion ignites into a power that can defeat Captain Hook (who, by the way, is no longer gay-vague).
Let's not even mention the depressing Death of Peter Pan (1988), about the "impossible love" of J.M. Barrie's adopted son Michael and his schoolmate Rupert Buxton."
7 Dark Secrets About the Real Peter Pan — Revealed
Barrie may have been portrayed by Johnny Depp in 2004’s Finding Neverland as a kind, caring soul who befriended a family in need, but Barrie’s real life story seems much, much darker. According to some accounts, Barrie left a trail of death and destruction in his wake — and he might have actually preyed on young children. Once you learn the following dark secrets about the real Peter Pan author, you might understand why people would believe this.
Here are seven reasons many question Barrie’s decency.
1. Barrie stole his own “lost boys”
According to Piers Dudgeon, the author of Captivated: J.M. Barrie, the Du Mauriers and the Dark Side of Neverland, Barrie manipulated his way into the lives of Sylvia and Arthur Llewelyn Davies, the parents of three boys, George, Jack and baby Peter.
Barrie apparently lavished gifts on the family and spent hours with the boys, having adventures in the park and making up stories.
When Arthur and Sylvia both died of cancer within three years of each other, Barrie assumed guardianship of the boys.
In case any blood relatives protested, he had Sylvia’s will forged, giving him custody. Strangely, the family never objected to a non-relative raising the children.
Years later, Peter said this about Barrie taking custody of him and his brothers, “The whole business, as I look back on it, was almost unbelievably queer and pathetic and ludicrous and even macabre in a kind of way.”
2. Barrie’s unusually close relationship with Michael and George
Barrie enjoyed taking photographs of the boys, with them sometimes in homemade costumes and often wearing no clothes at all.
Today, that would seem highly suspicious, but Barrie presented an innocent front to the adults around him, despite writing about the joy of undressing and sleeping next to a young boy.
Barrie’s book The Little White Bird, published in 1902, was a thinly veiled account of his relationship with George. While the book was incredibly popular when it was published, the following passage just feels obsessive.
“I lay thinking of this little boy, who, in the midst of his play while I undressed him, had suddenly buried his head on my knees… Of David’s dripping little form in the bath, and how I essayed to catch him as he slipped from my arms like a trout. Of how I had stood at the open door listening to his sweet breathing, had stood so long I forgot his name.”
3. Letter with creepy candle reference
In June 1908, Barrie wrote this note to Michael for his eighth birthday: “I wish I could be with you and your candles. You can look on me as one of your candles, the one that burns badly — the greasy one that is bent in the middle. But still, hurray, I am Michael’s candle. Dear Michael, I am very fond of you, but don’t tell anybody.”
The lines “the greasy one that is bent in the middle” and “don’t tell anybody” give us chills.
4. Barrie was not good with the ladies
Dudgeon suggested that Barrie was impotent and most likely never consummated his marriage to actress Mary Ansell, who wrote about her husband, “Love in its fullest sense could never be felt by him or experienced.”
She eventually had an affair with one of Barrie’s friends, which led to their divorce.
5. George died on the battlefield
Both George and Peter volunteered to serve in World War I. Some historians think this was a way for the young men to get away from Barrie. Sadly, George died in Belgium from a gunshot to the head. He was only 21.
6. Michael’s possible suicide pact with his gay lover
When he was also just 21 years old, Michael drowned along with another young man known to be his lover in what many biographers think was a suicide pact. The drowning occurred in a section of the Thames River called Sandford Lock that was notorious for its dangerous currents.
7. Peter’s suicide
In 1960, at the age of 63, Peter threw himself under a train. This was after he destroyed almost all the letters from Barrie to the Davies boys, saying they were simply “too much.”
How the fantasy of Peter Pan turned sinister
“All children, except one, grow up.”
When J.M. Barrie wrote that line about Peter Pan in 1911, it was generally taken as the expression of a beautiful and melancholy fantasy: Children are so lovely and so innocent that it seems a shame that they have to stop being children eventually. Peter Pan, the boy who wouldn’t grow up, is the expression of the dream that they may not have to, and as such he is both beautiful and tragic.
But in our own era, the idea of a child who never grows up has a decidedly sinister bent to it.
Since Peter Pan’s EU copyright expired in 2008, reimaginings and remixes of the story have flourished, including most recently Christina Henry’s Lost Boy: The True Story of Captain Hook. And most of those reimaginings, Lost Boy included, have tended to transform the eternally innocent Peter into a villain.
It’s true that we live in an era that’s particularly prone to giving dark-and-gritty reboots to beloved children’s properties (see Anne of Green Gables but with PTSD and sex-and-murder-filled Archie Comics), but Peter Pan seems to lend itself particularly well to this kind of transformation. It’s remarkably easy to recast Barrie’s “gay and innocent and heartless” Peter as a villain, and just as easy to reimagine Captain Hook — the former Eton student who is obsessed with “good form” — as a hero (see Once Upon a Time, The Child Thief, Hook and Jill, and dozens of other recent Peter Pan retellings).
You don’t even need to change the mythology of Neverland all that much — you just need to turn the setting of Neverland from a game, with game logic, into the literal truth. Then all of the darkness and creepiness that lurks beneath the surface of Barrie’s fantasy island, and all the sinister tragedy that wound through Barrie’s life, suddenly becomes legible. Because since the character’s inception, Peter Pan has been both fantasy and nightmare, both for Barrie himself and for the family of little boys who inspired him throughout their short, bleak lives.
Peter Pan’s two origin stories — both fictional and real — are immensely dark and sad
J.M. Barrie began the story of Peter Pan in his 1902 novel The Little White Bird.
It’s the semi-autobiographical tale of a man becoming enamored of a little boy who he wants to steal away from his mother; in order to befriend the child, he makes up the story of Peter Pan, the fairy/bird/baby who lives in London’s Kensington Gardens.
Peter Pan is a week-old baby when he leaves home, and he never ages past that marker. He believes that his mother will always leave the window open for him, so he plays gleefully with the fairies and the birds without fear of losing her affection, but when he finally makes up his mind to go back to her, he finds that it’s too late: The windows are barred, and his mother is cuddling another baby. Her love was conditional after all, and now she’s replaced him. It’s a portrait of Peter Pan that’s much more tragic than the iconic portrait to come.
The whole thing was based on Barrie’s own relationship with George Llewelyn Davies, a 5-year-old boy he met in Kensington Gardens when he was 37 (Barrie’s dog, the basis for Nana, ran right up to him), and for whom he nursed a deep affection. Barrie was soon to develop a similarly deep and jealous friendship with George’s four little brothers: John, Michael, Nicholas, and Peter, the last of whom would ultimately share his name with Peter Pan.
Critics and biographers have been arguing for decades about whether or not there was anything sexual about Barrie’s affection for the boys, and the question has never been settled to anyone’s satisfaction. Most of Barrie’s contemporaries described him as asexual, although he was married twice (he never fathered any children of his own). “I don't believe that Uncle Jim ever experienced what one might call a stirring in the undergrowth for anyone — man, woman, adult or child,” Nicholas, the youngest of the Llewelyn Davies children, remarked as an adult. “He was an innocent."
Sexual or not, the affection was certainly proprietary: After the death of the Llewelyn Davies children’s mother in 1910 (their father had died in 1907), Barrie, then 50 years old, altered her will to suggest that she meant for him to take on guardianship of her sons, rather than their nanny, and so fulfilled the dream of the narrator of The Little White Bird. The Llewelyn Davies children would live with Barrie for years.
But before he became their guardian, Barrie was merely the faithful friend of the Llewelyn Davies boys. He and his wife vacationed with the Llewelyn Davies family, and Barrie played with the children around the lake, creating endless tales of pirates and Indians and fairies. Those stories would become a book of photographs, ostensibly authored by Peter Llewelyn Davies and published by Barrie just for the family, and then the beginnings of the Peter Pan story in The Little White Bird.
In 1904, the story became a play: Peter Pan, or the Boy Who Would Not Grow Up. And in 1911, Barrie turned the play into a book, originally titled Peter and Wendy but soon to become known as Peter Pan. That’s the book we usually think of when we talk about “the original book of Peter Pan,” although it’s several steps removed from “original.”
The Peter Pan of both book and play retains the tragic backstory of the Peter Pan of The Little White Bird, but he is no longer confined to Kensington Gardens. Now, he has all of Neverland to play in, and pirates to fight, and Lost Boys to play with, and Wendy Darling and all of her descendants to transform into mothers to replace his original, inferior mother. He is no longer a tragic week-old baby left to fend for himself, but a gleeful, delighted school-aged sprite, forever crowing, “Oh, the cleverness of me!”
He is, in short, no longer a sentimental Victorian tragedy, but an ageless fantasy, and the only true tragedy is that Wendy will inevitably grow up and thus cannot play with him and be his mother forever. Peter kills pirates and Lost Boys alike without remorse, but these are play deaths that carry no emotional weight with them: You get the sense that his victims will get up smiling and be ready to play again as soon as Peter turns his back.
The emotional weight all comes at the end, when Peter meets the adult Wendy, who is “helpless and guilty, a big woman” with “something inside her … crying, ‘Woman, woman, let go of me!’” because she feels so strongly that she should remain a child for Peter’s sake and for the sake of the child she used to be. By growing up, she’s abandoned Peter just as his first mother did, and this causes Peter to cry — but not for long, because there’s a replacement waiting for him: Wendy’s daughter Jane, and then Jane’s daughter after that. There are always more children to play with, and always more mothers.
Peter Pan became an icon, but the Llewelyn Davies children lived short and tragic lives. George died at 21 as a soldier during World War I in 1915. Michael was just shy of his 21st birthday when he drowned in 1921, in what is widely believed to have been a suicide. John died of lung disease in 1959, at age 65.
Peter, who called Peter Pan "that terrible masterpiece,” died of suicide in 1960, at age 63.
Only Nicholas, the one who called Barrie “an innocent,” survived until he died of natural causes in 1980, at age 77.
Barrie himself died of pneumonia at age 77, in 1937. But he had been devastated by George and Michael’s deaths years earlier. He had come to think of Peter Pan less as a celebration of the childhood innocence of his young friends and more as a referendum on himself.
“It is as if long after writing ‘P. Pan’ its true meaning came to me,” he wrote in a notebook. “Desperate attempt to grow up but can’t.”
Literalizing Neverland turns Peter Pan into a villain very quickly
(Image: Robbie Kay as Peter Pan on Once Upon a Time - Caption: LOL, remember when Peter Pan turned out to be the father of Rumpelstiltskin, who was also the Crocodile? Once Upon a Time doesn’t get enough credit for how nuts it is. ABC)
Perhaps because the circumstances surrounding Peter Pan were so very sad and dark, once you decide you’re interested in turning Peter into a villain, it’s quite easy to do so.
In both book and play, Peter murders pirates easily, without a care. In the book, we learn that Peter kills the Lost Boys too, either to “thin the herd” or because they are growing up, which is against the rules. He also periodically alters the Lost Boys’ bodies so that they can fit through the tree-holes that lead to their underground lair — and because he cannot tell the difference between pretend and real life, he will sometimes give them pretend meals and refuse to believe that they are still hungry.
The Lost Boys and the Darlings face profound danger throughout both book and play, but Peter tends to find the danger entertaining rather than frightening. He always saves them, but less because he wants to help them and more because it will give him another opportunity to celebrate his own cleverness.
If Neverland is an arena for games — which is how it began, with Barrie and the Llewelyn Davies children inventing wildly around a lake in the countryside — this is fun and silly adventuring and the deaths and mutilation and starvation don’t feel real.
But if you begin to take Neverland literally, and to treat the characters who aren’t Peter and the Darlings as real people and not as props to have adventures around, it becomes extremely disturbing.
So in Christina Henry’s Lost Boy, the latest revisionist Peter Pan story, bloodthirsty Peter Pan isn’t so much the spirit of eternal youth, but rather a sinister cult leader. He lures young boys away from their families, periodically starves them, and then drives them to murder each other in a game he always calls “Battle.” The boys adore and hate and fear Peter in equal measure, but because they are alone on the island of Neverland and have no way of returning home, they have to follow him. He is their only protector.
None of that is particularly inconsistent with the characterization of Barrie’s Peter, but Barrie would never care to look at Peter from the perspective of a Lost Boy, because he didn’t create the Lost Boys to be characters with their own perspectives. He created them to be objects in a game. That’s how both book and play treat them. It’s also how Peter treats them, because Peter is a child.
The ability to think of other people as people, and not just as objects in the game of your life, is a characteristic of adulthood. For Peter the eternal child, thinking of other people as people is utterly impossible, and both book and play make that abundantly clear:
Peter, who represents youth, is “gay and innocent and heartless,” and no one truly matters to him beyond himself.
It seems that when Barrie first conceived of Peter Pan, he found the fantasy of living as heartlessly as Peter to be immensely appealing, which is why he was able to turn it into a sentimental fairy tale. Later, he found it appalling: He wanted to grow up, to develop true empathy, but felt that he could not.
But both sides of the ideal of the selfish child — the fantasy and the nightmare — live on in Peter Pan. And that’s what makes it exceptionally easy to turn Peter Pan from hero to villain, and to see his author alternately as a beloved genius and as a twisted man who ruins children’s lives.
Summary of what the Captain Hook meme really means
So in other words, the inventor of the fairy tale, a man named Barrie, appeared to have been quite likely a gay pedophile (and not an arm amputee) who was after three (then juvenile, not grown-up) boys. To gain their trust, he invented the story of Peter Pan and therein, he placed an arm amputee wearing a prosthetic hook as a hostile figure: that type of man would stand for all he would not stand for. Whilst the real Peter, tragically, killed himself later. The fairy-tale Peter Pan, who represents youth, is “gay and innocent and heartless,” and no one truly matters to him beyond himself.
So, Peter Pan is not exactly a particularly robust symbolic background to justify any hatred for prosthetic split-hook devices on - unless, of course, the values and intents personified by Barrie are tendencies, interests, social aspects and roles that one deeply identifies with oneself. That, however, we'd all have to accept.
The actual damage that negative Captain Hook stereotypes do to arm amputees by vilifying prosthetic limbs
It is quite clear that actually using the Captain Hook metaphor constitutes a problem that we cannot take lightly just on the basis of what it is supposed to mean. But its detrimental effects go beyond that.
- As mentioned previously, a number of children reported that prior to using the hand they had been called "Captain Hook" by other children and that this had disturbed them. There is considerable evidence that the effects of this name-calling can be quite destructive to social relations among children. One girl, in fact, refused to wear the prosthesis to school after such an incident. When the hand was worn these difficulties tended to disappear. [link]
- Historically, two significant problems frequently encountered by juvenile amputees wearing hooks to school have been the indignity of being called "Captain Hook" and similar names by classmates and refusal by other children to hold their hooks in handholding games. [link]
- People actually post views like that. "Lance on Twitter" writes in a tweet [link]: "Saw a guy missing an arm with a hook for a prosthetic. Avoided staring 2 be polite but wanted to not cuz it was weird bc it was SICK AS FUCK".
As a consequence, negative outcomes, complications result for the arm amputee that cost also society
Wearing a well-built body-powered hook is the best chance anyone has to actually avoid, or alleviate, problems from asymmetry and overuse.
As consequence of obeying the order of the Captain Hook meme promoters, hooks are not worn, instead, arm amputees wear less functional prosthetic devices, such as myoelectric "bionic" arms. Immediately, increased costs for prostheses result (as split hooks are better and more affordable) [link].
The term "less functional" means less alleviation from heavy sweaty real work. This causes increased cost, pain, and loss of function for overuse of the remaining hand (as split hooks are far better functionally) [link], increased cost with back pain due to asymmetry [link] and increased cost for overuse of the amputated arm (center of gravity issues) [link]. Logically, increased costs for decreased ability to work and function result.
Style-wise, promoters of Captain-Hook metaphors also lead the arm amputee to wear devices that reside in a strange, eerie and ugly mental world way down low, in the Uncanny Valley [link]
Addressing associated factually wrong information
Not only are these types of media articles damaging to an arm amputee, but they are also wrong. You may argue that statistically, it does not at all matter whether an arm amputee suffers from the asinine bullshit that is written - but that still leaves the authors with the fact that they are factually wrong. And with all respect for their sportsman-like asocial behavior towards an absolute minority group [link] - that is a really hard stone to swallow for anyone calling themselves a journalist.
Wrong: Swiss promoters that fear of Captain Hook-like prostheses claim that they cannot get newly developed technology as insurance would not cover that.
That in itself is clearly wrong. It is quite simply a wrong fact. Insurances are desperate to purchase or buy solutions that are actually better.
Swiss Disability Insurance repeatedly paid and still pay for my own, self-developed parts such as cable setup (functional improvement and financial improvement: massive), my own wrist development (both functionally and financially, for insurance, massively better) and definitely our shoulder anchor solution (avoids neurological serious complications, so totally interesting for insurance as well as for me).
How did I do that? I just showed them the parts and they loved them. Since then, they see how this is better because it is a lot more robust and thus, cheaper than less robust parts in the long run.
Wrong: Swiss promoters of a fear of Captain Hook-like prostheses claim that current Swiss law allows insurance to prevent new technologies for prostheses so they would have to be paid.
That is clearly wrong, also.
Law requires insurances to consider applications for a prosthetic limb that works, and that is functional. To protect everyone from new developments, particularly those developments that are not proven as functional, current legislation is quite sensible.
It is a sad fact that many new developments, functionally, are just trash.
To then protect taxpayer and insurance fee payers, as well as misguided users, from walking into the wrong direction, sober and hard testing and device rejection or approval procedures are necessary.
The SHAB and the IV seem, from my view, to be perfectly able to provide that.
Wrong: prosthetic split-hooks are alleged to convey an absence of feeling (Eric Fein)
About my experience with sensory feedback that is built-in with my body-powered arm:
- I do type without looking.
- I can roughly tell the grip status of the prosthetic split hook without looking.
Too lazy to look further ; )
Let me just list my body-powered arm's components here, and I add the year when the respective part came into the world.
- Shoulder anchor (2011): plastics, carbon fiber, new anatomically shaped development recently. No nerve compression, extremely short activation range, overhead work possible, comfortable, no sweat smell. You would never have guessed, but what do you know.
- Socket (current): elbow free, carbon fiber. Lightweight, robust. Elbow free firm suspension is great. What do you know about that!
- The suspension (technology from around 1996): Ohio Willowwood Alpha liner. Very comfortable. What do you care? Did you pass the Voight Kampff test at all?
- Pin lock (maybe 2003): fast lock / unlock, sturdy. If you want to carry stuff that matters. Otherwise, what do you know, right?
- Puppchen wrist (our own construction and testing, around 2009-2011): vibration insensitive; wiggle free; service free. Only for real work and when it matters to you personally. Otherwise, who gives a damn.
- Cable setup / Bowden mount (my own pat. pending 2014): extreme longevity, very low friction. Now, that is really only for the specialists here. The ones that really care about tight control.
- Very functional and new grippers:
- TRS Jaws (link).
- Toughware Equilux (link).
- TRS Evolution Prehensor (link).
I see not nearly so much slack in the technical problems related to the domain that started as the Russian arm [link]: myoelectric error rates are declining over the last 40 years, and they are generally a significantly inferior solution (link). My body-powered arm is full of very modern developments. You just did not know that. Now chill ... that doesn't make me the moron, alright? This reality is ever so slightly different.
Wrong: prosthetic split-hooks are alleged to be heavy or dead weight - Priya Ganapati [twitter], dead weight (Eric Fein)
Heaviness is attributed to "old" prostheses, and funnily enough (anyone dying of laughter at all?) the facts are entirely reverse [link].
- The most modern electronic "bionic" arm is heaviest.
- Any material- and mechnical-design wise advanced and sophisticated body-powered arm is the lightest.
- Functionally, any other option - no prosthesis, body powered hook, body powered hand - by far outruns the "bionic" prosthetic arm [link] [link].
Wrong: prosthetic split-hooks are allegedly "old" or "outdated"
Split-hooks are, historically, more modern than prosthetic hand designs [link].
Facts and considerations
You are what you wear - to a degree - so choose very carefully!
Wearing a particular prosthetic arm also defines how disabled I turn out to be then and there, grip / grasp-wise - and sometimes, wearing a prosthetic arm can be more of a disability than not wearing one. Good taste in picking the technically correct long term solution should be an acquired, educated choice, not an emotional run for the hill. I am not saying don't wear a body-powered, passive or myoelectric hand. If for whatever reason that is what does the trick for you, by all means go for it. I am saying that vilifying split hooks for vilification's sake: that is ever so totally dumb - as it lacks any facts.
I am not saying these split hooks are beautiful. Sure their looks suck a bit, but honestly? Prosthetic hands suck, too. When I was wearing a prosthetic hand, so many times, people reacted negatively.
Body-powered split-hooks are extremely fast, more modern than hand devices, have by far the better precision grip, have a far lower error rate than myoelectric arms, and effectively reduce or avoid problems of asymmetry and overuse, they are not bulky and they are very light weight-wise
So, now for the summary and fact check which you sorely need (that was why you really came here, right?):
- Body powered hooks are EXTREMELY fast [link];
- Body powered split-hooks have BY FAR the better precision grip [link];
- Body powered split hooks are MORE MODERN than prosthetic hands (even though the usual backstreet demagogue wants to make us believe differently) [link];
- Body-powered split hooks are so modern and innovative, they even leave the comprehension of transhumanists far behind [link];
- Body powered split hooks are extremely useful [link];
- Body powered technology has an error rate that is EXTREMELY low - so low, that it is way past the comprehension of the typical "engineer" [link]; show me your past papers that you authored or co-authored with regard to this subject, and we can check, together, on your exact comprehension on this aspect;
- Body powered arms generally can be very comfortable and affordable if they are built right [link];
- Wearing a body-powered arm extensively effectively addresses overuse and asymmetry [link] [link];
- Becker hands only go with body powered arms [link].
People that cite Peter Pan or Captain Hook in conjunction with prosthetic arm evaluations are thus strongly suggested to urgently revise the basis for their paradigms. You do not want your prosthetic gripper ideas to reside anywhere near the attempts of Sir James Barrie.
Last updated 12.11.2019 20:30
- Unless, of course, there is no second-order error - which might be the case if we do have modern-day adult people that do like to wear costumes, that do like to approach boys, and that do find themselves somewhere in the many projective mirror levels of a Sir James Barrie. We cannot totally exclude that.
- The company of Swiss Prosthetics is a funny firm, as they not only advertise using the smeary label of Captain Hook and Peter Pan, but explicitly declare products for sexual activity in their brand portfolio:
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Wichita amputee becomes the bionic woman and wants the world to knowBy Carrie Rengers
March 28, 2021 04:47 AM, Updated March 28, 2021 09:29 AMDuration 2:30 - 'When I have my arm on, I am cyborg'Amputee Sondra Stieber is one of the first people to be fitted for a biointegrated arm that she controls by nerve signals sent from her remaining muscles. She returned to Wichita on March 24, 2021 after spending a time at Hospital for Special By Jaime Green
Earlier this month, doctors in New York gave Wichita amputee Sondra Stieber a choice for her new bionic arm: she could look like a high-tech robot by simply sporting her sleek new carbon fiber arm or she could cover it with a flesh-colored glove that she could even paint to pretend she has fingernails.
“Heck, no,” she said, refusing the more natural-looking option. “I want it to look as ‘Star Wars’ as possible.”
That’s because she wants people to notice, ask questions and learn about the revolutionary procedure that is changing her life — one that she and her medical team at Ascension Via Christi hope can now benefit others in the area and beyond.
“It’s a game-changer for amputees,” said Trina Shockey, an Ascension physical therapist.
With the help of Ascension Via Christi and New York’s Hospital for Special Surgery Limb Salvage and Amputation Reconstruction Center, Wichita amputee Sondra Stieber has gone from what she calls a barbaric hook for an arm to a bionic one that she said can changes the lives of other amputees. Jaime Green The Wichita Eagle
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An Ascension team had been working with Stieber following her 2018 amputation when microsurgeon Joshua Linnell learned about osseointegration, a procedure that inserts a metal implant into a bone; in Steiber’s case, near her elbow. The implant becomes a permanent part of a patient’s body.
Then a myoelectric arm and hand can attach to the implant. The wrist moves along with each finger of the hand — including the thumb, which can move in an opposable way — for 14 different grips.
Physician S. Robert Rozbruch, the director of New York’s Hospital for Special Surgery Limb Salvage and Amputation Reconstruction Center, has been performing the procedure on people with leg amputations for several years. Stieber’s procedure is only the second time he did it for someone whose arm was amputated, and the technology already is more advanced than it was for the first one a year ago.
With the help of a sensor pack she wears on her upper arm, Stieber controls the bionic arm with her mind.
“Technically, it makes me a cyborg,” she said. She often giggles when discussing being a cyborg. “You’re part human, part machine.”
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Though she’s already been on a long road to get the prosthesis, Stieber still has a long way to go in learning to use it, but she has help.
Accompanying her to New York was Ascension occupational therapy assistant Leanne Bath.
“It’s all about just trying to get functionality back and for her to able to achieve what she wants to achieve with it,” Bath said.
With the training she received in New York, Bath also will help colleagues along with helping Stieber.
“We have to kind of learn with her,” said Ascension occupational therapist Mike Reynolds.
“We can’t reach into our little bag of tricks because we don’t have any tricks,” he said of dealing with this new prosthesis. “We don’t even have a bag.”
They’re eager to try.
“It just completely opens up the possibility for future patients,” Reynolds said.
Stieber said she already knows of a double-amputee child outside of Wichita whose parents are watching what happens with her. She said they can’t travel regularly to New York for follow-up therapy after a prosthetic procedure but could come to Wichita.
With her willingness to share information about her new prosthesis and her drive to succeed with it, all of Stieber’s therapists agree that she is the ideal patient for it.
As Shockey put it, “It couldn’t have gone to a better person.”
A shot then an avalanche
Stieber’s amputation and adventure into cyborgland are merely the latest twists in her eventful life.
The former Haysville science teacher has eight children and two step-children. During summers and other breaks from school, she used to travel to places such as Central America and Israel to teach.
Wichita amputee Sondra Stieber hugs her 7-year-old granddaughter, Skyelar Bryant, on Wednesday after returning from New York where she was fitted for a bionic arm, which she controls with her mind. Jaime Green The Wichita Eagle
During a 2008 teaching trip to Israel, a U.S. marine shot Stieber, mistaking her for a threat. That set off an avalanche of medical problems, though Stieber didn’t immediately know it. A surgeon opted to leave in the bullet, and Stieber recovered.
An avid surfer, she was hitting the waves while on a combination vacation and humanitarian trip to Central America in 2017. The bullet dislodged, and the avalanche started. A massive hernia resulted from emergency surgery in Guatemala. At one point, Stieber said she was so sick, she dropped to 81 pounds. Bedridden, she said she was “just every possible thing but dead.”
While recovering, she fell out of bed and broke her clavicle. She was told to isolate her movements, and it would heal on its own. When Stieber’s hand started turning cold and purple, she didn’t think much of it because she has lupus and Raynaud’s syndrome, which sometimes cause that to happen.
By the time she knew something else what wrong, Stieber had developed hundreds of microscopic blood clots in her arms. Doctors began rounds of vascular surgeries.
“On the eighth surgery, my body just . . . said, ‘Enough.’ ”
Over several days, doctors tried to save her arm, but Stieber begged them to stop.
“It was so painful, I wanted to lose my arm. I could not imagine why they were torturing me and keeping it on. It was gangrenous.”
Stieber said amputation was a relief.
“Every day since then has just been about seeing what I could do next.”
A miraculous moment
Stieber told her therapists her goal was to get back on a surfboard.
“I love when a patient comes in, and I can tell they’re a real go-getter because that makes my job a lot easier,” Shockey said. However, she said, “I knew we had a long way to go before we could surf, that’s for sure.”
This was before the bionic arm was even an option. Shockey’s goal was to help strengthen Stieber, whose foot would drop due to previous strokes — she suffered a number before her lupus was diagnosed — and cause her to trip and fall. Shockey said even doing rehabilitation would cause stumbling issues because “that was her neurological system trying to keep up with all these changes.”
Stieber received a traditional prosthesis, which she describes as a barbaric hook that was inflexible, uncomfortable and could cause sores and infections.
She learned of the bionic arm, and the Ascension team swung into gear to get her ready.
Reynolds began tinkering with devices to help Stieber prepare for the arm. She said the New York doctors were so amazed at what he came up with, they requested one to keep.
The bionic arm is more than 7 pounds — compared to the average 3 pounds a lower arm weighs — which Shockey worried would be an issue.
“I half pictured them putting this 7-pound limb on her and her falling over.”
Instead, something miraculous happened.
“The minute they put it on her, it was like that’s what she needed. It’s part of her,” Shockey said. “I’ve never heard an amputee put on a regular prosthesis and tell me it felt like a part of them.”
After Stieber returned from New York on Wednesday, Shockey retested her balance with her new arm.
Previously, Stieber scored in the teens on a balance scale with a total possible score of 24. With intense therapy, she might hit 20. With her new arm, Shockey said Stieber scored 23.
“She gives me a lot of credit for that, but I think maybe we just needed to put an arm on it.”
Now, Stieber’s biggest battle is with relaxation. After she gets the bionic arm calibrated, relaxation is the key to getting her hand to do what she wants.
“If I’m not relaxed, all kinds of nerves fire,” Stieber said.
The result: Her bionic hand spins in circles with a little whirring noise.
“But if I relax and think, ‘Open hand,’ it just opens my hand.’ . . . So what I’m really doing is I’m training the arm, and the arm has artificial intelligence. Pretty soon, it learns that signal so well.”
Not soon enough. The other night, Stieber was dining out with family members, showing off how she could use the salt-and-pepper shakers. She said it’s hard to both relax and carry on a conversation, though, so while she succeeded with the salt, she couldn’t let go of the pepper. About that time, they had to change tables, so Stieber had to take the pepper with her.
Most people take for granted something as simple as shaking pepper, but Stieber said it’s about half a dozen isolated steps.
“Reach out, grasp it, pick it up, twist it, twist it back.”
Then there’s setting it back down.
“Eventually, I relaxed enough that I could think, OK, open my hands and drop the pepper.”
Physical and technological challenges aren’t Stieber’s only hurdles. Another huge one is her medical bills, which she said she will be paying for the rest of her life. She’d already accumulated much medical debt — more than a couple hundred thousand dollars, and that’s with some doctors donating their time — when the opportunity for the bionic arm arose.
Insurance paid for the first part of her procedure — the implant — but it wouldn’t pay for the arm.
A couple of friends, who want to remain anonymous, paid the last $53,000 to make the arm possible. Stieber’s gratitude and relief overcame her.
“I couldn’t stop crying,” she said. “I cried for two days.”
Now she wants to fight so others like her can get help.
“I don’t want anybody to have that crude, painful hook anymore. When this technology is out there, it doesn’t make sense to give somebody that awful device.”
She’s training to be an advocate for the Amputee Coalition of America, and she’s also an unofficial ambassador for the bionic arm.
Stieber said some people in her life have heard enough about her arm, which she said she understands. She said with her excitement and fear before she left for New York and with her battle to receive insurance, it was all she could talk about.
“It’s kind of like you’re on a political mission. . . . This isn’t what amputees deserve.”
Stieber said it’s almost universally taboo to look at someone’s missing limb or prosthesis, but that’s why she wanted hers to stand out — to make it accessible so it will be OK to have a discussion about it.
“I wanted to not try to cosmetically look like something other than an amputee. I’m pretty proud of being an amputee. I mean, it’s my story.”
With the help of Ascension Via Christi and New York’s Hospital for Special Surgery Limb Salvage and Amputation Reconstruction Center, Wichita amputee Sondra Stieber has gone from what she calls a barbaric hook for an arm to a bionic one that she said can changes the lives of other amputees. Jaime Green The Wichita Eagle
Carrie Rengers has been a reporter for almost three decades, including 16 years at The Wichita Eagle. Her Have You Heard? column of business scoops runs five days a week in The Eagle. If you have a tip, please e-mail or tweet her or call 316-268-6340.