The Do’s and Don’t’s of My Albinism

Some time late last year, I had the pleasure of meeting a fellow blogger, Tom Hickey, you can find his blog by clicking here.  We got to chat and share some of our experiences with each other, he being a fan of my blog, and I a fan of his.  While our impairments were different and perhaps limiting in their own ways, I feel we really understood where the other was coming from.  During our chat, we obviously shared ideas about future blog posts, and he suggested I write a “do’s and don’ts” guide, as I had mentioned a few times that certain stereotypes and ways people act around me can sometimes get to the point of being annoying, and sometimes hurtful.

So with that, I’d like to share with you all my personal* views of what I find, in my words, “what is ok, and what is completely not ok!”.  And before I go any further, I’d like to point out that this is a personal guide, something I’ve written from personal experience that I think others might find helpful to.  So here goes…

The Do’s:

  • Ask me about albinism, and my sight.  Of course, if you’re reading this blog, you will realise I’m very open about my vision and what albinism is.  And I’m happy to share this information with people any time they ask.  I’ll always be happy to do that.  The only way to raise awareness of any impairments and conditions are to be open and talk about them.  And in my experience, people always love to learn.
  • “Who does your hair? I want to go that colour”.  I absolutely love this question, and the follow-up of “how do you mean its your natural colour”?  I always maintain an upside to having albinism is the fact I’ll never have to shell out on a dye-job for my hair, and never worry about roots.  You have to take the good with the bad, right?
  • Offer some help.  This isn’t a patronising thing to do, from my point of view anyway.  If I’m in the local coffee shop in college and people ask if I need a hand bringing my drink to a table, I’m more than happy for that help.  It means I don’t have to try and navigate obstacles like bags and chair legs while I have a hot liquid in my hand.  Or if I’m getting a train and the staff offer to help me get on and off, it helps make sure I don’t get too lost.  If I’m ordering food at a carvery counter and the server calls out whats on the menu, it helps to make sure I get to know exactly whats on offer and help me to choose – this is a particularly tricky situation because a lot of restaurants will have their menu written in chalk – a big no-no for me to read.

The Don’t’s:

  • Stare.  How many times do I have to say this?  I feel like a broken record.  I’ve lost count of the amount of times people have walked towards me and stared into my face – now I don’t mean a stare that is normal human nature whenever you’re passing someone in a crowd and you notice their hair/coat/handbag, I mean a blatantly obvious “I wonder do her eyes move/can she see me” stare.  Above anything else its extremely rude, but it can be hurtful, especially if the person being stared at (in this case me) is having a bad day.  It’s a horrible feeling when people spend some of their time staring at you in the face, and its something I don’t really know how to handle, even now.  Depending on my mood, I’ve been known to stare back at people – which really freaks them out if I’ve got my cane in my hand!  But sometimes, I’ll just retreat to somewhere with less people around, sit quietly, and try to mull over what makes me so inherently different that people feel the need to stare and point.  Like the guy who is staring at me in the library right now as I write this blog post.  Irony eh?
  • “How many fingers am I holding up?” Irritation level 100.  In all fairness, why would you ask someone that, especially someone you probably don’t know that well – generally these are the people who will think its ok to play Doctor and ask me.  I’m open about my condition, as I’ve said above.  But this is a line I feel people shouldn’t cross.  And I’ll normally respond in a way befitting that.
  • Patronise.   This is probably a generational issue in Ireland, and not a case of people being rude or obnoxious.  And it isn’t something that annoys me as much as the previous two points.  What I mean by patronising is when a person, normally an older person, will say something to the effect of “isn’t it great that people like you can read/attend university/get around on your own”.  People who make these observations are usually someone I meet in passing, let’s say in a doctors waiting room or on a train.  These are the people who mean well by expressing their happiness that “someone like you” can be independent.  As I say, it isn’t a point that gets me as much as the other two, but its something to be mindful of because it can make you question how different you really are, and how people might see you differently.

To finish this blog, I’d like to ask again: what are your experiences?  What are your do’s and don’t’s of your own condition – be it vision impairment, hearing impairment, physical or mental health issues?  I found after speaking to Tom that we shared some do’s and don’t’s – but probably not all the ones I’ve listed here because everyone is different.  Looking forward to some replies!

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Author: Beyond the Blonde

> 24 > BSc in Public Health & Health Promotion graduate > Masters student in UCC, MBS Government > politically active > entirely natural blonde > lover of rugby > consumer of cupcakes > dedicated follower of leopard print > afraid of but enjoy horror movies

2 thoughts on “The Do’s and Don’t’s of My Albinism”

  1. Hi Jessica, great and honest advice there. Our 4 year old daughter has albinism and we encourage her to do everything any 4 year old would do so the condition is not really holding her back so far. We’ve never really discussed albinism with her, choosing instead to answer her questions as they arise (which funnily enough, they haven’t! ). I was wondering at what age did you become aware of your condition, did your parents discus it with you at an early age?
    Fiona.

  2. Jessica,
    I have OCA2 and as far as the visual difficulties can relate. The patronizing as you called it I don’t mind as I know that the older generation has had limited exposure and certain “beliefs” about the “disabled” of all types. I am from the northeast part of the USA and my biggest “disability” is my vision.

    Some of my biggest things that push my buttons, so to speak, are the people who stare, the people who hop over the cane cause they can’t take 15 seconds and wait for me to pass. Another is the people who play chicken with me by waiting till the last second to move out of my way (i always win when in a sour mood)

    The how many fingers thing though is also a 100% on the don’t list. This will automatically get a foul, rude, crude answer as one person found out not long ago.

    I actually have many things that push my buttons when it comes to my “disabilities” but I have learned to take it all with a grain of salt

    Most people I encounter are pretty well mannered though.

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