The Spoon Theory, Deafness And Skepticism (I’m One-Degree-Of-Separation Most Days)

Do you know what the Spoon Theory is (pdf link)? If you don’t, you can also check the following video after you read about my day.

I just came in from a lovely lunch with two wonderful people who work for disability services in town. We all knew each other from different circumstances, as skeptics – and then suddenly realised over a plate of olives, cheese and mocktails that they worked in the same building and never realised it!

If you’re a local, you’re shrugging as you read that last paragraph. People in Perth know that, without any hint of karma or magical connection, somehow everybody is connected in some way to EVERYBODY ELSE in this city.

See that guy over there? He went to school with your brother. The waitress at the other table? She was at your second cousin’s wedding and arrived on the arm of the guy who was in your Chemistry classes all through your undergraduate year.

If you accidentally go home with the wrong coat after a night out at the Geisha Bar, chances are you’ll find that it belongs to the former room-mate of your co-worker three cubicles over and you’ll see them during Sunday morning pilates classes. Tell them I said hello, because they’re also my sister-in-law. It’s ridiculous. You could probably create an Infinite Improbability Drive via figuring out how improbable that is, tap it into a finite improbability generator and give it a fresh cup of really hot coffee from Dome.

Checking the Tweet-stream on the way home I notice that another two wonderful people are catching up – MiltOnline and ZenMonkey. Once again I’m a single degree of separation between them and there’s yet ANOTHER one of those funny coincidences – because they’re also chatting about health and skepticism. ‘ZenMonkey’ (aka Joey Hayban) has written in the past about the intersection of skepticism and chronic illness, such as this blogpost that she linked to for Milton.

Which leads me to also mention this Australian article that Joey tweeted, which deserves to be read. In response to Australia’s Business Woman of the year, Dimity Dornan’s choice of words reported by the Sydney Morning Herald; “I think deafness is at the same stage polio was… It is a scourge in our world but it can be almost completely eradicated. I believe we can truly make this happen” – you can go read My Deafness is no Scourge; An Open Letter to Dimity Dornan by Jennifer Blyth:

You are promoting yourself and your organisation as miracle workers who will make deaf children hear and speak, as if you were god and had granted a cure upon us that we would receive gratefully like a lucid sufferer of Alzheimer’s would. While I will cede that there are people who would rather learn to speak English and never use Auslan, which is their rightful choice, there are also thousands of people who are Deaf and proud of it. These people all speak either in sign language or spoken language, or even better, both. These people don’t want you to compare deafness to polio, to a disease that maims and kills people.

Of further interest – here is the interview I did last year with Joey, on the Token Skeptic podcast: Episode Twenty-Six – On Chronic Illness, Deaf Culture And Skepticism – Interview With Joey Haban  - the transcript will feature in my forthcoming book, with many thanks to her.

I think a little communication can go a long way – as the YouTube video with Christine Miserandino demonstrates. Go view that now if you haven’t already.

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About Kylie Sturgess

Kylie Sturgess is a Philosophy teacher, media and psychology student, blogger at Patheos and podcaster at Token Skeptic. She has conducted over a hundred interviews including artists, scientists, politicians and activists, worldwide.
She’s the author of the ‘Curiouser and Curiouser‘ column at the Committee for Skeptical Inquiry website and travels internationally lecturing on feminism, skepticism, and science.

  • Aliasalpha

    Ooh I actually know what spoon theory is without having to look it up!

    I once sent my best friend a big pack of plastic spoons as a joke present when she was having a lupus flare. I seem to recall she called me an idiot and laughed which was the point.

    • Kylie Sturgess

      That’s really very cool. :D

    • http://newly-nerfed.net Joey H.

      That’s great! I would have laughed too. :-)

    • katonine

      He did send me a very large pack of spoons, and it did the trick, laughter is , in my opinion the best medicine, and Aliasalpha always manages to make me laugh, and forget how crap I feel :)
      P.S. Spoon Theory is a brilliant description of living with Lupus.

  • http://zombunist.blogspot.com Quietmarc

    I confess, I have a really difficult time understanding some aspects of the deaf culture point of view. I believe whole heartedly that people should be treated with dignity and respect, and I appreciate that there entire cultures that have developed within the dead community, but I stumble when it comes to the idea of the future deaf, the people who have not been born yet who could theoretically be born hearing through intervention. To my mind, deafness is different from, say, homosexuality (which I am), or transgender issues, in that it’s really difficult for me to believe that not having access to an entire sense can be balanced out on the quality of life scale. People adapt to their situation, and the ways that humans have overcome challenges are manifold and wonderful, but I have a real hard time “getting” that deafness is not a detractor from overall quality of life.

    By all means if someone wants to remain deaf, I support that decision, but if we could one day say “No one will be born deaf or will become deaf from this moment,” I would struggle to see that as a bad thing.

    What am I missing here? What do I need to connect these dots?

    • SundogA

      I also find it hard to comprehend. But I think I understand where the idea is springing from.

      For decades now the idea of “not disabled, differently abled” has been promoted throughout the western world. It IS a more compassionate view – see the person, don’t let the problem fill the picture. And by promoting this view we reduce the feelings of inferiority and loss that the sufferer feels – maybe even eliminate them. A good thing, I think.

      But it can also arrive at the point of “there’s nothing wrong with me, I’m just deaf.” And that’s a problem, because, frankly, if you’re deaf, there IS something wrong with you. To never experience the joys of Beethoven, Benny Goodman or Bachmann Turner Overdrive IS a loss.

      “Deaf Culture” is great. Hearing is better.

    • inflection

      I have to agree, quietmarc. I can see that someone who is deaf might want to justify to themselves that this was a positive aspect of their life, as part of seeing themselves as a whole and good person… but if deafness is so good, would you ever inflict it on a child that wasn’t?

      I respect that deaf people can accomplish as much as anyone else, and the various sign languages of the world are fine human creations, and related forms of dance, and writing, and on, and on, are perfectly good art forms for which their creators’ deafness is part of the context which is important for understanding them. What I can’t really grasp is people who somehow think that the creators of all this art would have been uncreative had they not been deaf.

      Necessity is the mother of invention, but we’re never going to run out of necessities even if we could permanently fix a whole class of them. I like beef jerky, but I’m glad I’m not worried about whether my food supply will make it through the winter.

      • Kylie Sturgess

        Hi all, I’m not deaf. I’ve done two units of AUSLAN, one of which included studying Deaf culture. But the following might be of use in terms of getting to understanding the issues a little better:

        Volunteering WA:
        “Many people who are profoundly Deaf and use sign language, identify themselves with quite a unique culture – the Deaf culture. The Deaf community represents people who consider deafness to be a difference in human experience rather than a disability, and are proud to be members of the Deaf community. Identification with this group is a personal choice and members of this group generally use Auslan, or Australian Sign Language. As such, they are a linguistic minority group, in a similar way as people from a non-English speaking background are. When used in the cultural sense, the word Deaf is capitalised.”

        Some information sheets:
        http://www.deafservicesqld.org.au/sites/default/files/Deaf%20Culture.pdf
        http://www.vicdeaf.com.au/files/editor_upload/File/Information%20Sheets/Deaf%20Culture%20and%20Communication%20-%20A%20Basic%20Guide.pdf
        Some interesting conversations here: http://deafness.about.com/od/deafculture/a/deafdisabled.htm

        And films I’ve seen include: Sound And Fury, which was nominated for an Oscar. From one review online:

        “The documentary follows one family’s debate over whether or not to provide two deaf children with a device that would give them the ability to hear, called a cochlear implant. Much of the focus of the documentary is on the deaf 6-year-old, Heather Artinian, and her family, who are divided on the issue of the hearing device.
        While Heather explains that she wants the implant because she wants to communicate like other people and hear the world around her, her parents struggle with making the decision to give her the cochlear.
        “English is just moving lips, it has no meaning for me,” Heather’s father Peter explained. “But sign is so visual, it has emotion. I could communicate for the first time. My fear is that if Heather were implanted she wouldn’t be a part of the deaf world or the hearing world; she’d be part of cochlear implant world.””

  • http://www.tokenskeptic.org Kylie Sturgess

    In addition – a statement from Deaf Australia:
    http://www.deafau.org.au/pdfs/MsDornanApologyOct2011.pdf

    It includes:
    WFD and Deaf Australia respect parents’ choices but their position is firmly that deaf children have
    the right to use sign language as well as English and to have their deaf identity actively accepted
    and respected.
    “Parents should not have to choose between either speech or sign language,” said Ms Lloyd, “They
    should have access to both speech and sign language for their child and be supported to make the
    best possible choices for their child’s needs.”

  • http://newly-nerfed.net Joey H.

    Those of you who mourn the losses that you believe Deaf people experience are still viewing the situation through your own hearing cultures. (The capital “D” indicates people who consider themselves part of Deaf culture, as opposed to the smaller “d” which includes anyone with a physiological hearing loss.)

    Let’s get this stereotype out of the way first of all: all the Deaf people I’ve ever known enjoy music. Whether they have enough hearing to hear the actual music, or whether they hear or feel it through bass and/or vibrations, they enjoy it. And if it is through a different way than you enjoy it, is there something objectively wrong with that? Of course not.

    And in any case, saying “Deaf people are missing out on x” is applying your own cultural values to an entirely different culture. Which it is, and that doesn’t work. American Deaf culture (with which I’m most familiar as opposed to other regions’ Deaf cultures) isn’t just people bonding together because they’re deaf. It’s not just a justification to make themselves feel better. It’s not related to decades of disability awareness.

    The roots of American Deaf culture go back several centuries, and are inextricably linked — as with all cultures — in language. Sign language, to be exact. Which in the 1880s was decided by an international coalition should be banned and all deaf people brought up using only spoken language. As a result of this, deaf education degraded horrendously from Deaf teachers successfully teaching English and sign to their students, to deaf kids shoved into mainstream classes with little or no support. (There were no professional sign language interpreters until the ’60s, because American Sign Language was not understood to be a true and distinct language until then.) American Deaf culture evolved partly out of this, but has its roots even earlier in American history.

    The primary value of American Deaf culture is American Sign Language, because it is the natural language of the deaf and because of its history of being oppressed and banned. Now can you say the primary value of your culture (American, Australian, etc.) is its language? Not even close, right? This is only one example of how different Deaf culture is from hearing culture. You simply cannot apply hearing values and viewpoints to Deaf people. It would be like expecting Inuit people to strive for financial success in the entertainment industry.

    All the psychologizing here comes from the pathological view of deafness, meaning something is lost, wrong, or missing. Culturally Deaf people simply do not believe that, as atheists don’t believe in God. Asking a Deaf person “Don’t you miss your hearing?” is like asking a woman “Don’t you miss your penis?” Whether something is good or bad, right or wrong, depends on the values of the community that decides. And when hearing people decide for Deaf people, it simply doesn’t work. If you cannot believe that Deaf people aren’t missing out, then you simply aren’t culturally equipped to pass judgment. Luckily there are lots of fun ways to remedy this, like reading a book, taking an ASL class, or attending deaf events.

    By this essay I’m not intending to convince you that Deaf culture is somehow superior to hearing culture. It has its own problems like all cultures do. (But those problems don’t stem from the fact that its members are deaf.) I do, however, very much want to convince you that Deaf culture exists, that it is foreign to and in some ways opposite to hearing culture, that its values and language are worthy of respect, discussion, etc. on their own grounds, not as compared with hearing people and spoken English. (Sign language is a “fine human creation” as long as you would call English, Latin, Japanese, or Swahili such as well. It is a full, robust, growing and evolving language with its own grammar and syntax just like spoken languages; the sole lack is a written alphabet, since Deaf people use the alphabet of the majority language.)

    My experience comes from my years of sign language interpreting as well as applying TESOL methods to teaching college English to underprepared deaf students, in ASL. I’m very tired and didn’t intend any offense by any part of this by-now novel; please forgive me if there are any inconsistencies, lapses in logic, and so forth.

  • http://zombunist.blogspot.com Quietmarc

    Thanks to everyone who responded. I’ve been thinking this over and really do want to understand. I very deliberately avoided saying certain things in my original question because I can see the fallacies in them (eg, I don’t think that deaf people miss out on music: music is experienced not just through sound but through vibration, through rhythm, and can be protrayed visually in a variety of ways. I understand that deaf people are not living in a world “without beethoven”).

    The reason why this nagging at me is because when I think about my objections/reactions to the “cultural genocide” idea, a LOT of my rejections of it sound really, really similar to objections to other oppressed groups. For example, I’m gay. The ex-gay movement would like to convince me that I am “missing something” by not experiencing the fullness of a healthy heterosexual lifestyle. I can see some disturbing similarities between that attitude and the idea that deaf/Deaf people are missing out on experiencing the fullness of a healthy hearing lifestyle…and that similarity is unsettling.

    I do not doubt that there is a Deaf culture, and that it needs to be understood and respected as a culture. I think that a lot of the examples brought up here are terrible and really do reflect crimes against other cultures that we’ve seen throughout history and in present day. I don’t believe that anyone should be forced to lose their language or their identity just because a dominant group or class says they should.

    But it seems to me that Deaf culture does challenge some seriously entrenched ideas about what culture is in general.

    I’m fine to just “live and let live” if I just can’t understand. As I said, a lot of my personal objections indicate to me that I’m coming up against a personal prejudice that I hadn’t realized I had. I haven’t had a chance to read or absorb all of the literature yet, but I’ll do so over the next couple of days and revisit it. Thanks again for all of that.

    • http://zombunist.blogspot.com Quietmarc

      Just something quickly…I think it’s coming down to, as you pointed out Joey, I’m stuck on thinking of deaf people as missing something. I may need to reevaluate what I think is required for someone to be a “whole” person, because I’m making an implicit assumption that hearing is a part of that.

      When I examine that assumption, though, I keep coming up against a bunch of “slippery slope” arguments (okay, so what about people born without full use of their limbs? people with developmental abnormailities? The whole range of human disease could theoretically fall into “people who just happen to be different”, so does that mean it’s unethical to try to “cure” them or prevent their differentness from happening?) which is a red flag to me that I’m missing something and have a prejudice.

      I think it comes down to the fact that human experience is incredibly complex and sometimes that complexity is unnerving to acknowledge.

      • http://newly-nerfed.net Joey H.

        Your last paragraph is very well said (not that the others aren’t!). It’s a good thing for all of us to remember.

        To the “slippery slope” notion, It might help to think of the impossibility of separating language from culture, and the academic perspective that culture consists of a set of values and a language that are passed down from generation to generation. Of all the people that the able-bodied world thinks of as disabled, only the Deaf have their own language, and it’s from that language that Deaf culture was born. It really is akin to a national culture; people do speak of the “Deaf nation” almost as though there is a separate country right here in the U.S. that most Americans don’t even know exists.

        Also, I should add that “cultural genocide” is an extreme position to take. As with any group, there are most definitely extremists in the Deaf community, and it’s okay to be weirded out by some of what they say. Deaf culture is disappearing as a fact, but that has a lot more to do with advances in communication technology, for one thing, than with hearing people making war on the Deaf. There are activists who take a strong position, and there are those who take positions that are hard even for other Deaf people to support. And — again, as with any group — there are Deaf people who flat-out hate hearing people, and their activism comes from that. And obviously many of us would agree that activism based on hatred isn’t really okay.

        In other words, it’s phenomenally complex even within the culture and among people who are part of the deaf community but not part of the culture. As you’re willing just to admit that there is a Deaf culture but that you really don’t understand it, that right there is a hell of a lot more than many hearing people will open their minds to.


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