Sunday, 20 October 2013

The White Fairy Sees All! Magic and Mind-Reading Part 2


Not to be too sensational about things but there is a mind-reading fairy living in my house.  Not a Cottingley Fairy (t'uh, big fakers) but a real, proper, actual fairy.  Who can read your mind.  Honest. Look...


Okay, so she doesn't look that impressive in a pack-a-mac but if this was 1850 we'd make a fortune.  What a horrible thought.  For those of you who don't know, the above fairy is my daughter Lily-Rose and she has ocular-cutaneous albinism, or put simply she is a girl with a lack of pigment in her skin, hair and eyes.  For the Victorians that would be enough to condemn and revere her.  What's that all about?

Ettie Reynolds the Madagascar Lady
I've wanted to do this post for a while as the subject is obviously very dear to my heart.  Here comes the science bit to start with:  as a genetic condition, each parent has to pass on half of an albinism-related gene so you have a one in four chance of inheriting both parts from your parents.  Even if you get both bits, albinism itself is quite a wide spectrum.  Lily-Rose is somewhere in the middle: she has very little pigment in her skin and hair, her eyes are blue and her eyesight is atrocious.  However, she is in a mainstream school, in a 'normal' class and she is doing very well.  When she was diagnosed at 10 weeks the various prognosis we were given for her ranged from 'she'll be just like everyone else, just blonder' to 'she's blind, possibly deaf, won't talk, might not walk, possibly retarded (actual word used, many thanks to that specialist)'.  If you think that's bad we were also told one other thing: She's unlucky.

Ponder that, my friends.  The person who said that didn't mean that Lily was unlucky to have inherited albinism, they meant she was the bringer of misfortune.  Because Albinos and Dwarves are unlucky.  You heard me right.

Now I had never heard that particular belief before and so would be fascinated to hear if anyone else had come across it as I believe it stems from a particular area of the country.  After picking myself off the floor and checking the calendar to make sure we were still in the twenty-first century I decided I wanted to find out more about the cultural beliefs surrounding albinism.  Enter Miss Millie Lamar...


Oh Miss Millie Lamar, you genius.  In a time when being different was definitely hazardous to your health, many men, women and children with albinism found relative safety and employment in circuses and freak shows.  Millie established herself as a mind reader and found great success and I'm guessing an aid in fooling people was working on their prejudice. And she wasn't the only one...


Little Ida, the Fairy Queen of Peerless Beauty.  Well, that's quite a mouthful and quite a claim.  Mind you, an adjective that has been applied to Lily on more occasions than she's had hot dinners is 'fairy'.  It's not only her appearance that causes this but also the tendency for children with albinism to play on their own due to difficulties in recognising their friends in a busy playground.  She also has difficulty with judging personal space as she often doesn't realise how close she is to people she is talking to and often doesn't look at people's faces when they talk to her or she replies. She cannot see them clearly so turns her head to hear them better.  None of that is 'normal' apparently.  It's 'quirky', which is currently our favourite euphemism for 'your child is weird, do something about that please'.  To her kinder teachers, it was something fascinating, something charming, something magical.  As a parent, I much preferred to hear my daughter was magic, but neither speak of any great understanding of Lily's 'disability' (I don't think albinism is a disability in itself, but her eyesight definitely is and has a knock on effect in her behaviour and habits).  To Victorian audience, that 'magic' was worth an entrance fee.  Best not tell Lily's school that.

Little Ida and Millie made the best of the hand genetics gave them, at least for a while, but what of other Victorians with albinism?  What did texts of the day say about the fairest among them?

We're going to need a bigger boat...
I knew that Moby Dick was 'the white whale' but I hadn't realised the connection with albinism and the amount of symbolism and prejudice in the novel.  Based partly on the killing of an albino sperm whale in the 1830s named 'Mocha Dick', the whale in Moby Dick is described as actively malevolent and this is linked to his albinism, a common theme which I'll come to in a bit.  Many passages talk about the horror of his appearance in such ways as this: 'What is it that in the Albino man so peculiarly repels and often shocks the eye..?'  The 'wrongness' of albinism is alluded to repeatedly, how albinos must be as different inside as they are outside.  Possibly Moby Dick is the birth of the 'evil albino' myth, so prevalent in books and movies today.  The Da Vinci Code, Cold Mountain, The Matrix, even the damn peacock in Kung Fu Panda 2, it is lazy shorthand for evil.



Mind you, in nineteenth century society, evil wasn't the prevalent prejudice.  Summed up by Karl Pearson in his early twentieth century works on heredity and eugenics, 'albinism is very often associated with lowered physique and lessened mentality.'  Charming.  While one rare strain of albinism does have a health implication, ocular and ocular cutaneous albinism has no impact on physical development or health at all.  More puzzling was the claim that albinism was a strictly men-only club.  European albinos were always male as the female siblings of albinos were 'destitute of the Albino degeneracy...' Again, charming.

A chap with albinism who doesn't look very degenerate.  Nice braiding.
I wonder if the apparent belief that albinism was a male condition is why women with it were fetishized and the mythology grew up around them.  If you consider that the average response to the physical appearance of those with albinism is reflected in The Art of Preserving the Hair on Philosophical Principles (1825) : 'The whiteness of the skin is not the clear and glossy tint of the uncoloured parts of the European frame in the healthy state, but of a dead or pallid cast, something like that of leprous scales.' Once more, charming.  It's astonishing how that contrasts with the fascination with the appearance of women with albinism, possibly because in general belief they shouldn't exist.  Maybe that's where the magical element comes in...




















Little Ida is described here as 'the beautiful Albino', completely at odds with the apparent revulsion felt about the condition.  In many of the images of women with albinism their hair is loose and a feature of the portrait, like our lady on the right.  Mind you, Lily-Rose has a fairly spectacular head of hair and causes a stir when she is out and about.  I have had women accuse me of dying her hair (that was a very aggresive encounter) and as neither me or Mr Walker have blonde hair, a kind old lady in a supermaket informed Mr Walker that his daughter obviously wasn't his.  People randomly stroke her hair, mostly in lifts, and the only place where we passed unnoticed was Stockholm where everyone is blonde and so no-one felt the need to comment on how blonde Lily was.


Rudolph Lacasie and family

Unknown Ladies

















The Lacasie family was 'acquired' by P T Barnum during a visit to Amsterdam in 1857 and became a feature of his travelling circus.  While it can assumed that Rudolph Lacasie actually did something entertaining (judging by the costume) I suspect people just came to see them and their genetic difference.  If that sounds weird to us with our modern sensibilities then bare in mind while looking for the historical images for this blog I found many webpages devoted to the 'wonderful weirdness of albinos'.  They were very nice sites, saying how beautiful people with albinism are, but all the same they are concentrating on how different they are.  Do you think that is a good thing?  I really don't know.

Thank you Aardman Animation for making the Albino Pirate
just as daft and funny as the other pirates.  
I think the point of this post is to question if our manner of seeing things has really changed since Victorian times.  We are now more aware of the offense idiotic notions of 'difference' can cause and hopefully we have made progress in accepting and ignoring difference where it just doesn't matter, but there remains something primal in our fear and fascination with 'Other'.  Like with the witch, when we celebrate and embrace the cunning woman is it the innocent victim of hysteria we celebrate or the fictional stereotype of a misogynistic society?  Neither seems worth splashing out on stripey tights for.  Likewise, a lack of pigment in eyes, skin and hair seemed enough to make you magic in the olden days.  How ridiculous.  Still in certain areas of the world it is enough to get you killed for your valuable magical body parts because you are a 'ghost', not human at all.  How terrifying.

Me and Lils last winter in our matching hats.  That I made.  I know.
Lily knows she has albinism and has a vague idea of how it makes her different, physically.  Only time will tell what she will make of all the other nonsense that seems to go along with it.  Mind you, judging from the photograph above I think Lily-Rose has bigger problems than some absent pigment.  She has us as parents.  Lawks.

10 comments:

  1. As a child I had white blonde hair from a family that had dark brown hair. It later darkened but I assumed Lily was likewise...(i.e. - it was cool you named her Lily with her white blonde hair). The heart of the matter for me is that she looks loved and happy and supported by parents who love her - how cool is that. For me I want one of the antler hats. Thank you for sharing your personal stories.

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  2. Where we live there is a high number of people with albinism so we're lucky enough to get the best treatment possible, so we see a lot of children who have a more challenging time of it than Lily-Rose (which in retrospect is the most coincidental name, being white and red). The antler hats rule and don't in any way make us look 'quirky'. Okay, maybe a bit.

    Thanks for your comments :)

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  3. I'm a 'ginger' (or was, till my hair faded to mouse and my beard to white) so I've experienced a little folk-lore-based prejudice myself. Judas, I've been assured, was a ginger, and red Celts are by nature untrustworthy. Have you heard the expression 'I'm going to beat you like a ginger step-child'? Lovely. And I've enjoyed the bit in the 'Educating Yorkshire' title sequence where the tough girl says 'Oh mate, wait till I get that little ginger bastard' each week. I was a big ginger bastard, fortunately, so I didn't suffer much from bullying at school. Then I discovered that the best stunners are red heads (did anyone call Lizzie Siddal a ginger bastard, I wonder?) and I've never looked back. Lily, I don't doubt, will flaunt her white fairyhood. Say it loud! I'm pale and I'm proud.

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  4. Mr Walker is a ginger ninja too so I used to get a lot of 'You do realise your kids will be ginger too' weirdness. Ha, we showed them...

    Lily is justly proud of her head of glorious blonde hair and old ladies tell me that she won't have to worry about getting a husband. Yes, that's a weight off my seven-year-old's mind...

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  5. I remember reading a little book on albinism when I was little and looking at one of the photos in the book of a young girl and feeling as jealous of her as I felt of girls with freckles. I had brown hair, brown eyes, and pale skin and I was dying for any trait that would set me apart. I had to get used to looking fairly average, but I hope Lily cherishes looking different! ;)

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  6. Lily has a fascination for my moles (Of which I have loads on my neck) as she has none and spent many a moment in babyhood attempting to remove them for me when I wasn't looking! All she is aware of at present is that people think she is beautiful and she's actually quite chuffed at that. T'uh, typical.

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  7. What a fascinating post - Lily is quite magical, and you are very lucky to have her. My OH is bright ginger (or was until he started shaving all but the goatee!) so he had that prejudice growing up. At least until he went over 6' with the muscles to match - funny how it stopped then.

    Have you spotted that rather nasty trend in the news after that little blonde girl, Maria, was taken from a gypsy couple in Greece, and now a blonde girl has been taken into care from gypsies in Ireland, because neighbours reported to the police that she was too fair to be the gypsies' daughter. A scary trend...

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  8. Thanks for the comments. Yes, I saw the thing about the travellers' children and it's one of those situations that is just awful. It's awful that people raise the alarm because the kids don't look like the parents and it's awful that the travellers have apparently enforced a rubbish old stereotype that 'the gypsies will pinch your babies'. I am hoping for a decent, reasonable outcome to the whole situation....

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  9. I hope Lily-Rose doesn't come under too much meanness from her peers. Has her school made it clear to any who have, that it is wrong single someone out for being very fair (or having any other colour skin and hair)? Especially as modern science makes it perfectly clear that she isn't a ghost or fairy-child but has a genetic condition.

    Some of those assumptions strangers have made and then acted upon are terribly rude and out of order - it makes me wonder if they ever learnt manners. Even if they think someone HAS dyed their daughter's hair blonde, what makes them think that it is an appropriate response to be aggressive over it? And that comment about illegitimacy to your husband was appallingly rude!

    As a very socially-awkward (for reasons I am not going to declare on the internet) kid, I didn't do very well at playing with other children, or even being interested in normal childish things and to add to that I have always been taller than my peers (apparently it is very weird for a girl to be taller than the boys), very pale and nearly-black haired with grey eyes that are pretty dark, and before my braces I had pretty bad teeth - the other kids said I was a vampire and suchlike, and rumours about me being a witch and (weirdly) a 'gypsy-child' started long before I became interested in Wicca. Now I'm an adult and a Goth and Pagan, well, I'm quite happy to have an appearance that is naturally an aide to achieving my desired aesthetic (and I guess part of me chose that aesthetic in the basis of running with what nature had given me), but back then it stung quite a bit. It's weird how these old bits of folk-lore hang around. My Dad's the same, appearance wise - tall (6'3 and a bit now), pale, dark eyes, black hair, odd teeth) but he didn't get picked on for looking like a mini-Dracula as a kid, so I wonder if it's that children these days are more exposed to horror tropes, or that little girls looking eerie is somehow deemed creepier (especially if those little girls are serious-minded, socially solitary and generally not much like a normal little girl in other ways) for more complex reasons to do with gender stereotypes and suchlike.

    It's all irrational, though, from prejudice against red-headed to ginger people (a common one, and my very Irish other half has that curly red-gold hair with threads of bronze that certain Celtic-ancenstry folk have, and I think it's beautiful, not ugly, but he is very self conscious about any redness to it) to people being unusually pale or even having albinism. So much prejudice based on appearance! Especially since modern science has disproven much old-fashioned reasoning as to why such people look different. To me it is utterly silly that folk carry on like that - everyone looks different, so why make personality judgements on such superficial things as appearance?

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  10. Love love love this post. And I wish Thea had gotten to meet Lily-Rose when we were in England. They would have had lawks indeed!

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Many thanks for your comment. I shall post it up shortly! Kx