Why Do We Need Disability Diaries?

Today is the day people. DISABILITY DIARIES IS GO.
If you've somehow managed to miss my endless fangirling about its existence in the last few months, then a) you're incredibly talented at avoiding the internet, and b) you're going to need to know a bit about it, aren't you?

Basically, you're in store for a week-long extravaganza of reviews, interviews, discussions, TBRs ... pretty much any kind of post you can imagine, all related to promoting decent representations of disability in literature, especially YA.

If you want to make sure you don't miss a single post - which you don't, right? - make sure you follow me and my fellow mods, Angel, Cee Arr, Dina, Ely and Jolien on Twitter, and keep an eye on the #DisabilityDiaries2017 hashtag: we've got a load of other people contributing, so it's the best way to keep on top of everything.

But ... why do we need an event like this? Why do we need Disability Diaries?

I've attempted to explain why disability representation is so important generally in a guest post at Chasing Faerytales, and also expressed my anger at harmful representation in this little rant here. But today I'm going to answer that question in a new way.

I need to tell you the story of The Woman.
Not Irene Adler. This particular woman was probably a pretty normal person: about my Mum's age, chatty, pretty nice on the face of it. I'd never met her before; I was at a party where one of my Dad's friends lived, and I didn't really know anyone. But she proceeded to be someone I'll never forget.

And not in a good way.

This is the conversation we had. I've removed the boring bits, like me saying "Hi, I'm Lara", but the first words written were basically the first words out of her mouth:

Her: So, do you go to school?

Me: Uh ... yeah. I go to [local Secondary], which is a mainstream school.

Thankfully, I resisted the urge to add "and I'm in the top set, you pig". Would have been entertaining to see her face, though.

Her: Can you tell me a bit about ... why you're in the chair?

I wasn't exactly keen to tell a perfect stranger what's actually private medical information, but I figured my commitment to making sure people are educated about disability still stood, so I told her. Through only ever-so-slightly gritted teeth, I explained that cerebral palsy was a condition that affected my nervous system, that it caused lower-body spasms, and ... well, some other stuff too. I don't remember all of it.

Her: Do you take any medication? Like, to help with the spasms and things?

Me: No, there isn't any, really. I've taken pain meds after operations, but mostly it's just a physio programme, and -

Her: Oh, you should!

Me: What?

Her: I think medication would really help you.

Me: Oh, well I'm constantly in contact with my doctors, and they - we - never really thought that medication would be useful.

Her: Oh, no, no, no! I'm a nurse, and there are a lot of supplements ...

And then she was off. Listing medications and herbal things and - by the end, the only way I could get her to stop was by thanking her and saying I'd bear them in mind. So she got to wander off and think she'd done her daily good deed for a poor disabled girl, and I was left with the feeling that my feelings, opinions and knowledge had been completely ignored.

It hurt.
I came to two conclusions while I sat there, a little bit shell-shocked. 1) The Woman was almost definitely really drunk, and 2) she hadn't actually meant to be offensive.

At no point had she tried to be rude to me, or bully me, or hurl slurs at me, or anything like that. She just fell victim to her own near-complete lack of knowledge about disabled people and how to interact with us - and honestly that's quite sad. As far as I can tell, she was trying her best to be nice.

But solely because the world doesn't contain enough education on disability, she ended up alienating me, treating me like I was stupid, and completely denying me any right to make my own choices. Just because no-one had ever told her how to avoid that.

And that's why we need Disability Diaries.
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16 comments:

  1. Amazing!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! XD XD

    (And I'm so ridiculously happy that there is an Irene Adler gif, you have no idea!)

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    Replies
    1. Aww, thank you. If an Irene Adler GIF is all it takes to get you ridiculously happy, I'll fit them in on every post ;)

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    2. I'm easily amused ;)

      (And she's hot as hell!)

      Delete
  2. I admittedly know very little about disabilities (although I'm more familiar with mental illnesses than I am physical ones), so I'm excited to read these and learn more! :) Can't wait!

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    1. This makes me so very, very happy, Kate. The whole point of this event is to help people become more familiar with disability as a whole, as well as why it needs representation, so I'm very excited that you're excited to learn ... if that makes any sense. Hope you enjoy the rest of the posts I've got planned!

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  3. Ugh. The Woman is doing this to many disabled people. I have certainly seen her lurking about. She makes me mad. But, I am glad you are part of this world, and part of this collaboration. Can't wait to read more from you, Lara! <3

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    Replies
    1. I feel like The Woman is only one part of a shadow army that accidentally spend their entire lives lurking about and making other people mad. Maybe events like this will help us defeat them.

      I'm really glad you enjoyed, and I'm hoping you'll love everything else I've got lined up, too.

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  4. A lot of people, as soon as they find out you have a disability, immediately just start telling you what doctors you should see or what medications you should take or what remedies you should try, or even things like, "You should go outside more and get more sun, that would help!" And rarely do they mean to be offensive, they just don't realize it. They just kind of automatically think they know our bodies better than we do based on the very little information they have about our situation. And the truth is, I might be the very same way, thinking I was helping by saying something like that, if I hadn't experienced it from the other end myself, you know? So yes, that is exactly one of the reasons we need more things like Disability Diaries.

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    1. Yes! Exactly! I think part of the thing that annoys me so much about these people is that the moment they realise you're disabled, the only thing they want to talk about is disability. As if it's not possible for you to have other interests or maybe want to talk about something different for a change.

      That thing where they think they know all - you're right, it is automatic, because if they took a second to think about who might be the expert here, they'd never come to the conclusion that they knew more. Like, don't you think if there was something that would almost magically make my life easier to live, I'd be doing it? It's just a case of common sense ... but sadly a lot of people turn into rabbits in headlights and forget all of that the moment they hear the word 'disabled'.

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  5. I hate that people say these kinds of things to anyone. Even more, I hate that this happened to you. You are such a gorgeous person, and I would actually kind of like to break into the Woman's house and sit her down for a very long lecture about disability and basic human decency.

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    Replies
    1. Well, luckily for her, I don't even have a name, let alone her address, so even with your ninja skills I think a break in would be difficult. And - hey - I think Disability Diaries is basically going to be one big lecture on disability and human decency, so you've got that one covered!

      (You are gorgeous too, my lovely friend.)

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  6. Oh, man! This post hit me really hard.

    I don't know many disabled people... But I want to be the type of person who always treats disabled people with respect and love and understanding... In a way that doesn't offend them. But I'm not really sure how??? Like I don't know what gets on your nerves, what's nice and what overbearing and I'm afraid I'll hurt their feelings??? Or do something wrong...

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    Replies
    1. Kayla, it means the world to me that you care this much.

      Thefirst thing to remember about talking to any disabled person, especially one you don't know very well, is that they are just a person, just like you. Resist the urge to talk about their disability the moment you start a conversation with them - just talk about normal things. School. Books. TV shows.

      The bottom line is you should never be scared about talking to a disabled person, because conversation is the best way to break down stereotypes.

      Just think about it this way - if you paint yourself as the kind of person who cares, and are willing to actually listen to what that person says, rather than ploughing on trying to give advice or ask questions that they’re telling you aren't wanted, you can't go far wrong.

      If you want to find out more about disability (or at least my view on it - remember every disabled person is different) then do a search on this blog for "disability". I've done a few posts on how to behave well and be understanding.

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  7. I will totally check out your other posts on this topic. This is so important and I wish people would talk about it more! :) What you're doing is very important. :)

    Also looking forward to more Disability Diaries posts!

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    Replies
    1. First of all, so sorry it took me this long to reply. Life has been pretty crazy this last week or so.

      Disability Diaries is over for now, so you can find all my related posts in the "Disability Diaries" tag (just scroll to the bottom of this page and have a quick Hunt for the right one), or search #DisabilityDiaries2017 on Twitter to see everyone's posts - a bunch of different people got involved and that's the place to go if you want to see everything.

      And thank you. I like to think that if it wasn't important, I wouldn't be doing it.

      Delete
  8. No problem! I will be sure to check it out!

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