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    Entries in albinism (2)


    So This Thing Happened

    If you don't know this already, I have albinism.  It is a genetic condition (don't worry, you can't catch it from me) and the kind I have (there are many) shows up 1 in 17 000 live births on average.  Anyway, the UN has been at the forefront of trying to explain to people that we are just like anyone else, except on the outside (oh and except for our shitty vision).  So, they have been collecting stories and such from people.  Well, it turns out that one of the people they are featuring on their website is me!  (As an aside, I use parentheses way too often).

    The local (and by local I mean 330 km away....) CBC station picked it up and had an interview with me.  You can listen to the interview here.  I think I did ok, though the guy misprounounced my name.  To his credit there is a typo on the website.


    Blind is not a bad word...

    OK, so those of you that know me, know that I have a disability.  I am blind, well legally blind.  So I actually can see, at about 10 percent of normal visual acuity.  This is all my parents' fault (in that it is due to a genetic disorder).  That disorder, albinism, not only makes my skin and eyes an unearthly exotic white, it also screwed badly with the devleopment of my visual system.  On the upside, it gives me super powers, ok, that part I made up.  Anyway, it is, nowadays, not that big a deal to me.  There was a time when it bothered me a lot, but that is well in the past (being mercilessly bullied and teased as a kid will make you a bit bitter....)

    People are often afriad to ask about my disability, for fear of offending me, but I am always happy to answer.  For the most part, it means that I basically see in SD while the rest of you lucky bastards see in HD.  It is not that stuff is blurry or anything, it is just not there.  There is a lack of detail.  Oh yeah, and I have no true depth perception, for this reason I hope that 3D TV fails, but that is another matter.

    Me on the left at about 2, and two other kids who probably don't even have twitter accounts, much less blogs, Photo credit Leslie BrodbeckI have always had this, indeed one is born with this disorder.  Now, note something right there.  I said disorder.  I am not differently abled.  I am not challenged.  FUCK, I hate being told I am challenged.  Once back in grad school a particularly PC type told me I was visually challenged.  I said 'yeah, I wake up and think, oh boy, what a challenge, today maybe I will walk into a wall.  Oh yeah, it will be such a challenge when I can't find my glasses in the morning'. 

    Brent Morris and I were talking about this very issue on the boat at PAB2011.  Brent has some deal with his leg, I don't know what it is, but he has a limp.  He was talking to someone, I am not sure who, and I heard him call himself 'crippled'.  I came over and mentinoed that I am blind.  We then both started talking about how perfectly good words were being replaced with euphemisms.  We also figured that this was being done to make people without disabilities comfortable. The funny thing was watching some of the people hear our discussion, they looked a little oh let's say uncomfortable, and I think Brent and I enjoyed that....

    A nice example of the use of such euphemisms is the local agency that works with people who have Down's syndrome, autism and other developmental disorders. It is called 'Community Living Algoma'.  Now understand I think they do excellent work.  My son Jon (who has autism) gets services from them and they are first rate.  But, what the hell does 'Community Living' mean?  I always think of George Costanza saying 'you know, WE LIVE IN A SOCIETY' when I hear the name.

    Now, I am not saying we can put the toothpaste back in the tube so to speak, and bring back words like 'idiot' and 'moron' (they have taken on new meanings) but what the hell is wrong with the word blind?  It means you can't see.  Believe me, if you saw how close I am right now to this damned computer you would say 'yeah he's blind'.  

    I honestly believe these PC euphemisms are there so the able bodied can sanitize the fact that people like me and Brent are different, and our bodies don't quite work properly.  (I mean that is the function of the 'new' sanitized labels, I do think that the idea is one from people of good will).  I just wish people could be more fucking precise now and then. Oh and maybe ask my opinion.  (I mean the blind community here, not just me, though hell, I will speak for them if they elect me, or I have some sort of blind coup, I mean I can see a bit, so I am like a supersighted blind guy really, oh where the hell was I...)  I can't be the only blind person that finds 'visually challenged' an annoying term.

    Finally, I know there are things I cannot do.  I will never drive a car (legally...) I will never be an F1 driver, I will never fly a plane and I probably won't go parasailing.  I mention the parasailing because Isabelle's brother in law told me that some blind guy in Quebec sued an instructor that would not let him, a BLIND GUY, (and I mean like 0 % vision here) solo parasail.  He won his ridiculous human rights case (I guess he was going under constitutional right to be a fucking idiot) and he soloed.  Oh and he hurt himself pretty badly....