Päivitä sanavarastosi / Update your vocabulary

I am participating in the yearly Blogging Against Disablism Day blog carneval with this post in my Finnish author/disability blog. An English translation follows after the asterisks (***). After posting this I realized that this may not be a very accessible solution for those using screen readers, so you can also view the English part via this link (it might not be a permanent link for this file, so please link here instead). (Sadly again there are some posts participating in BADD that I would deem ableist, but I guess that’s some people’s view of the issue.)

Osallistun tällä tekstillä vuosittaiseen Blogging Against Disablism Day -blogikarnevaaliin, siksi siitä on alla myös englanninkielinen käännös. (BADD:hen on taas osallistunut mielestäni varsin ableistisia blogimerkintöjä, mutta kaipa tämä on joidenkin näkemys asiasta.)

Keskustelua ei voi käydä ilman sanoja. Truismi, mutta tärkeä asia ymmärtää. Monien homoaktivistien mielestä homokeskustelua ei voitu käydä, ennen kuin sana heteroseksuaalisuus tuli ihmisten tietoisuuteen. Transsukupuolisuuden vastakohta cissukupuolisuus ei ole vielä kovinkaan monien tiedossa. Tämä puutos vaikuttaa ihmisten ajatteluun ja (trans)sukupuolisuuden hahmottamiseen yllättävän paljon. “Autistin vastakohta” neurotyypillinen on etenkin verkossa levinnyt jo kohtuullisen hyvin.

Suomessa harva tuntee sanaa ableismi. Jos sitä käyttää, moni pitää sivistyssanoilla briljeeraavana, saati sitten, että lähtisi edes arvailemaan sanan merkitystä. Suomenkielinen Wikipedia ei tämän kirjoitushetkellä maininnut koko sanaa missään muualla kuin audismia käsittelevässä artikkelissa, vaikka artikkeli aiheesta Vammaisten syrjintä löytyykin.

Sanan puutteessa itse asiastakaan ei juuri puhuta. (Mieti, kuinka vanhanaikaiselta kuulostaisi puhua rasismista “rotusyrjintänä”?) Jostain syystä Suomessa tykätään kutsua kaikkea syrjintää rasismiksi – ikärasismin lisäksi näkee homojen syrjintääkin kutsuttavan rasismiksi. Tosin eipä juuri puhuta spesismistäkään (toinen, joka oikeastaan vaatii sanan ollakseen olemassa) tai transfobiasta.

Vammaissanasto ei muutenkaan ole kovin hyvässä jamassa. Sanaa “invalidi” näkee yhä aivan turhan paljon. Hiljattain iltapäivälehdessä puhuttiin pyörätuoliin sidotusta raajarikosta. Tässä vaiheessa vammainen tarkistaa kalenterista, että millä vuosituhannella sitä oltiinkaan – tosin Google-haku “pyörätuoliin sidottu” löytää yli tuhat osumaa.

Siinä missä homon vastakohta on hetero ja transin cis, vammaisen vastakohta englanniksi on (temporarily) able-bodied eli AB tai TAB. Suomeksi voi puhua tervekehoisesta, joka ei ole aivan sama. Englannin kielen sanan “crip” käännökseksi on ehdotettu mm. “rämpylää”. Ihan sympaattinen sana, mutta en osaa kuvitella, että vaikka romaanini Maria olisi kutsunut itseään rämpyläksi.

Suomessa ei ole edes fiksua käännöstä sanalle fatigue. Itse käytän yleensä sanaa uupumus (niin lääketiedekirjoittajan työssäni kuin muutenkin), mutta suuri osa lääkäreistäkään ei ymmärrä eroa fatiikin ja väsymyksen/uneliaisuuden välillä. Niin, ja riippuu keneltä kysyt, sairastanko kroonista väsymysoireyhtymää vai myalgista enkefalomyeliittiä (molemmat G93.3). Iso ero.

Jotkut kroonisesta uupumuksesta kärsivät ovat ottaneet käyttöön sanan spoonie viitaten spoon theoryyn eli lusikkateoriaan, jossa kroonisesti sairaalla on rajallinen määrä “lusikoita” eli energiaa käytössään päivää kohden ja kun ne loppuvat, ne tosiaankin loppuvat. Spoonie on söpö hellittelynomainen nimi, josta ei tule mieleen raajarikko, mutta muille se ei aukene ja pidän koko lusikkateoriaa äärimmäisen typeränä.

Englanniksikaan vammaissanasto ei ole yhtäpitävää. Toisten mielestä pitää käyttää termiä “disabled person” (vammaisuuden sosiaalinen malli: yhteiskunta on “disabloinut” henkilön), toisten mielestä “person with disabilities” (ihminen ensin: vammat ovat vain hänen ominaisuuksiaan). Molemmilla on pointti. Poliittisesti korrekteimmat (yäk) eivät pidä sanasta disability ollenkaan, vaan käyttävät termiä “differently abled”. Toiset kirjoittavat “disABILITIES”, joka näyttää mahdollisimman höhlältä.

Minä olen kantanut korteni kekoon luomalla sanan sekä suomeksi että englanniksi. Cripfic tarkoittaa vammaiskirjallisuutta, jota edustaa esikoisromaanini Marian ilmestyskirja sekä kaksi tulevaa romaaniani. Jotkut ovat paheksuneet tuota sanaa, eniten tietysti sellaiset, jotka eivät tiedä sanan “crip” olevan vammaispiireissä samanlainen sana kuin homoille “queer”. Kaikki eivät pidä kummastakaan sanasta, mutta moni kokee ne omikseen.

Mieheni luuli ensin, että cripfic on vitsi, hänestä se menee yligenrettämisen puolelle. Liika genrettäminen onkin usein naurettavaa, etenkin musiikkimaailmassa (olen muuten myös musiikkitoimittaja), mutta genreillä on myös funktionsa. Cripfic-hyllyä ihan heti tuskin tulee Akateemiseen, mutta on helpompi puhua cripficistä kuin “kaunokirjallisuudesta, jossa on vammaisia ihmisiä”, siinä missä harva jaksaisi puhua “kaunokirjallisuudesta, jossa on haltioita ja yksisarvisia”.

Vain pieni jäävuoren huippu yhteiskunnallisesti tärkeistä asioista päätyy koskaan julkisen keskustelun aiheeksi. Sanojen puute ei ainakaan helpota sitä.

***

You can’t have a discussion without the appropriate words. A truism, but important to really understand. Many gay activists feel that proper discussion about homosexuality wasn’t possible before the word heterosexuality was widely known. The word cissexuality, the opposite of transsexuality, is still known by very few. This shortage has a surprisingly large effect on how people view and perceive transsexuality and gender roles as a whole. “The opposite of autist”, neurotypical, is spreading out nicely especially on the Internet.

In Finland very few people know the word ableism. If you use it, many think you’re just trying to show off with fancy, obscure vocabulary, let alone that people would try to figure out what the word means. At the time of this writing the Finnish Wikipedia did not even mention this word outside of an article about audism, even though there is an article about “discrimination of the disabled”.

In absence of that word the actual issue doesn’t get discussed very much. (Just how old-fashioned does it sound to talk about “racial discrimination”?) For some reason in Finland all kinds of discrimination tends to get labeled as “racism” – from “age racism” to “racism against gays”. Not that there is much discussion about speciesism (one thing which really requires the word to exist as a concept) or transphobia.

The Finnish disability vocabulary as a whole isn’t doing terribly well. You still see the word “invalid” very often [including the name of the only well-known disability organization in Finland]. Recently an article in a tabloid discussed a “wheelchair-bound cripple” [note that using the term “wheelchair-bound” in Finnish makes it sound even more like someone has been literally tied to his wheelchair!]. At this point a disabled person goes to check his calendar to see which millennium it supposedly is – though a Google search of “wheelchair-bound” in Finnish finds over 1,000 hits.

Whereas the opposite of gay is hetero and the opposite of trans is cis, the opposite of disabled in English is (temporarily) able-bodied or AB or TAB. In Finnish you would say that someone is “healthy-bodied”, which isn’t really the same. There is a proposed Finnish translation of “crip”, but it hasn’t really caught on. I can’t really imagine Maria, the main character of my novel, using that word.

Finnish doesn’t even have a good translation for “fatigue”. Personally I prefer to use a word that means something like exhaustion (in both my medical writing and informal contexts), but even most doctors cannot understand the difference between fatigue and tiredness/sleepiness [a problem certainly not absent in English, but even worse in Finland]. Oh, and depending on whom you ask I have either chronic fatigue syndrome [which, predictably, translates to more like “chronic tiredness syndrome” in Finnish] or myalgic encephalomyelitis (both G93.3). Big difference.

Some of those suffering from chronically fatiguing illnesses have adopted the word “spoonie”, which refers to the so-called spoon theory, in which the chronically ill have a certain amount of “spoons” (energy) in use for a day and when they run out, there’s none left to use. Spoonie is a snappy, cutesy name, which doesn’t make you think of cripples, but most people wouldn’t have any idea of what it means and personally I have never liked the spoon theory at all.

Even in English the disability vocabulary is far from set in stone. Some people think the proper word to use is “disabled person” (the social model of disability: the society has “disabled” the person), others insist on “person with disabilities” (person first: the disabilities are just attributes). Both have a point. The most “politically correct” (eww) don’t like the word disability at all, but use “differently abled”. Others write “disABILITIES” which I find looks silly.

I have done my part in creating a new word for Finnish and English alike: cripfic. It refers to disability fiction, which is represented by my first novel Marian ilmestyskirja [Maria’s Book of Revelations, info page in English] and two of my upcoming novels. Some people have expressed dislike for that word, mostly of course those who don’t realize that the word “crip” is used in disability circles in a similar fashion to gays using “queer”. Neither word is liked by everyone, but others readily identify with them.

My husband first thought that cripfic was a joke, he thinks it crosses the border to overgenreizing. He’s right that excessive genreizing is often silly, especially in the music world (a music journalist speaking here…) but genres do have a function. We might not see a cripfic shelf at Barnes & Noble any time soon, but it’s easier to talk about “cripfic” than “fiction with disabled people”, just as talking about “fiction with elves and unicorns” is not very convenient.

Only a small tip of the iceberg in societally important issues ever ends up being topics of public discussion. Lacking the appropriate words is not going to make it easier.

13 Responses “Päivitä sanavarastosi / Update your vocabulary”

  1. Ruth Madison says:

    Excellent, now I know what genre my fiction is! Cripfic. Perfect. :) People are always asking me what kind of writing I do and it takes a long explanation usually.

    • You might get a few blank stares though. ;-P But hopefully in the future we will not have to explain!

      I’ve got some interesting reactions at NaNoWriMo meetings when people have asked what genre I’m writing in. For over half of the people the answer is fantasy, for many of the rest it’s scifi or maybe chicklit. Not cripfic all that often…

  2. Selene says:

    I like the idea of the oppositional terms being needed, that’s what enables us to move beyond things like sexuality or “ability” just being assumed “normal.” Interesting post!

    I was curious which posts you considered ablist from BADD this year?

    I wish I could read more of your blog, but sadly have no Finnish. Thanks for the translation.

  3. Casdok says:

    Interesting to read the use of words in other countries.

  4. Indigo Jo says:

    Hi there, and thanks for commenting on my entry.

    There are a lot of issues with both commonly-used names for ME in English – a lot of people with ME, even in the USA where CFS is the preferred term, hate it because they don’t believe that “fatigue” sums up the experience, let alone the other symptoms – but there are a whole lot of others in languages besides English. For example, in Spanish and Portuguese, the word for “sclerosis” begins with an E (as do all words which begin with S+consonant in other languages, e.g. Espana for Spain), so both ME and MS are EM, which led to Lynn Gilderdale’s illness being misreported as Multiple Sclerosis.

    There are some patients who favour the term “Ramsay’s disease” after Melvin Ramsay who identified the illness (and named it ME) in London in the 1950s. Assuming there isn’t already an illness by that name, that would make it clear which language is referred to, although I’m sure that some who defend the name ME wouldn’t be too happy about the change.

    • Yeah, there are so many different names. The page The Clinical and Scientific Basis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome lists like half a page of names, both those proposed and mostly those used in the past! I wasn’t aware of the Spanish issue, but all illnesses with short abbreviated names do get confused with something else (e.g. EDS is both Ehlers-Danlos syndrome and excessive daytime sleepiness, both of which often occur in CFS/ME).

      I like myalgic encephalomyelitis, or the very long but descriptive neuroendocrine immune dysfunction syndrome (or something like that).

  5. The lack of appropriate words is also sadly a problem in french

    • I bet it’s a problem in many languages. English likely has the best vocabulary, with the international disability (and medical) community coming up with words as needed.

  6. hc says:

    In your post on March 29th, 2011 you describe a certain group of people in Finland as ““kristillis”-psykoottiset sekopäät’, meaning ‘”Christian”-psychotic nutcases’, referring to Christians who oppose to the rights of LGBT-people.

    Don’t you think it is disablist to use words around mental health problems in a derogative way? Oh, and I am bisexual, so I belong to those people you obviously try to speak for in that post, but I also live with mental health problems and I’m sick of the ignorance of Finns around this issue.

    • You’re right. After I had written that post I realized the language wasn’t very nice. Mental illness doesn’t make anyone evil – but sadly, delusional thinking combined with being an asshole can lead to very nasty results. (I have two people in my family who have suffered from psychotic delusions, so I’ve seen it.) I should have worded it better, but now I’m unsure whether to edit it or not.

      (Sorry for the late reply, by the way.)

  7. Graham says:

    Great post. May I ask why you don’t like the spoon theory?

    • Because the imagery doesn’t make any sense as a metaphor for energy levels. Spoons can’t be expended. It’s not intuitive. And it does not describe the experience of many people at all.

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