Writing about characters with disabilities

(22 Posts)
Kai1977 Sat 19-Nov-16 09:06:43

One of my main characters has a disability (he doesn't have use of his left arm and hand). I want to stress that he's not being used as a plot device, the character just arrived 'in my head' this way. However, I do want to ensure I write sensitively about the character and would like to find out more about these types of disabilities and the challenges people may face.

Any ideas for resources? I'll certainly seek people in real life to talk to about it but first I want to do some background research online. I tried the relevant sections of Mumsnet but haven't had a response so far.

Thanks!

Kai1977 Sat 19-Nov-16 09:15:27

Oops forgot to mention, the book's set in the early 1970s so I also wanted to find out more about employment opportunities for people with disabilities then.

Try googling for blogs by writers with disabilities and see what you find. I've read a lot as background for characters who happened to have disabilities and they're a great way to get an insight into people's everyday lives.

Witchend Mon 21-Nov-16 19:59:04

My dd was born without a hand. I can answer questions if that's necessary.

However it slightly depends if it's no use, or missing below a certain level. Because what she has, she uses. You also have consider prosthesis, adaptions etc.
They'll almost certainly be able to do more than you think (dd plays the trumpet, does gym, dance, has done judo, climbs up a climbing wall quicker than most of her contemporaries, in fact the only thing we've found is that she isn't going to be a concert pianist-please don't tell me about the left handed concert pianist at this point, I know)

For 1970s, I know a chap who was born without either hand. He was a teacher in the 1970s. One of his specialities is a demonstration of how to peel and chop an onion (with his feet)

A lot of it is just the slightly different ways she does things, which she does so fluently you wouldn't think of her doing things differently. I'm trying to write a story for her at present using a character with a little arm (dislike stump myself) and it's really hard to present the differences without it sounding like you're beating the reader over the head with it.

It would be great to see a character with this disability where it isn't either a "how terribly brave" or a huge plot devise. So good luck.

Kai1977 Mon 28-Nov-16 21:14:42

Thank you so much for the advice, some great suggestions. I definitely want to create a well rounded character, not just something to further a plot so I will let you know how I get on.

stripyeyes Tue 29-Nov-16 10:00:34

Was the character born like this or acquired it through injury or illness? This will have a massive psychological impact on how they see themselves (and therefore important things for you to know such as their values and motivations) and how they live independently.

StUmbrageinSkelt Tue 29-Nov-16 10:07:19

This article has some interesting insights

www.theestablishment.co/2016/11/17/why-the-publishing-industry-cant-get-disability-right/

TheCountessofFitzdotterel Tue 29-Nov-16 11:19:28

I am reading OutrageousFlavourLikeFreesias' latest book now as it happens.
One thing she has done that I think is key is that you don't know about the disability until several chapters in, so you get to know the character as a person before you register her as 'person with disability'.

Kai1977 Tue 29-Nov-16 16:13:10

Thanks that sounds really interesting. I assume you can't tell me the title of the book here?

My character was born like this (although I guess I need to do more research as to what might have led to this from birth). The book is set in the early 70s so that will make things more complicated.

I was trying to work out what someone with this disability might do for a living then.

OohhThatsMe Tue 29-Nov-16 16:17:17

Is your book on sale, OutrageousFlavourLikeFreesias? I'd love to read it if it is.

Hi there, thank you so much for the interest! Yes it's on sale now - it's called "Lily's House" and it's on Amazon.

TheCountessofFitzdotterel Tue 29-Nov-16 16:25:56

And it is very good. So far!

OohhThatsMe Tue 29-Nov-16 16:31:56

Great, I've just bought a copy! You have some fabulous reviews from famous novelists!

Oh, thank you - you're lovely! Hope you enjoy it x

TheCountessofFitzdotterel Wed 30-Nov-16 10:09:30

OK, second thing I have learnt about this question from Freesia's book: she doesn't spell too much out, relies on the reader having some basic commonsense and knowledge about the implications of the disability for communication.
This is good because I know I would have been tempted to explain too much, and it's much more satisfying as a reader when it's not overexplained.

OohhThatsMe Wed 30-Nov-16 10:52:29

I'm sure I'll enjoy it, Outrageous! I've got a few books on my TBR list but will let you know as soon as I've read it.

Witchend Thu 01-Dec-16 14:48:20

As to if he was born like that, assuming it's just his one hand than it's probably "one of those things."
If he has issues with more than one limb then it can be genetic, if there are other issues it can be a known syndrome (which can also be genetic). If it's both arms then it can be drug (eg thalidomide) related.

There are two theories; the first is more popular and often presented as a fact. Do not believe any known American "doctor" website on it.
1. Amniotic banding: This theory is where the amniotic fluid forms a band where the limb can't grow through. According to one American "doctor" it also causes clef palate if it's wrapped round the neck hmm. Stupid.
2. A blood clot: This is where a blood clot forma either in the developing limb or the placenta and the limb isn't getting blood to it and the body chooses to stop growing the limb rather than risk the whole foetus.

Interestingly it is much more common (about 2/3)
girls
upper limb
left side
between elbow and wrist.

It is perfectly possible to be born missing your left hand and be clearly should have been left handed. My dd reckons she should have been left handed. I'm not convinced, but I do know people for whom that is definitely true.

If they've been born like that in the 70s that's an interesting time. They would have been encouraged to use a prosthesis. Probably a split hook, but that was round the time that myoelectric became available reach.org.uk/
was the charity set up around campaigning to have myoelectric hands for children.
Children that are born without a hand are less inclined to use a prosthetic than those who lose it-however in the 70s it wasn't often presented as an option.
it also depends on how much of an arm he has:
Below the wrist-not sure when toe to finger transfers came in, I think much more recently than the 70s. They wouldn't have had any prosthesis.
Wrist to elbow-the best to be missing for a prosthesis
Above elbow-becomes a much more complicated device because they need two moving parts. Much less likely to use as very heavy.

I can't think of anything (barring concert pianist-can play the trumpet with right hand only though) that would have been barred for someone;
teacher, customs officer, doctor-I know them all.

If you're talking about adult in the 70s, then things would be different (although the teacher was teaching in the 70s). What I will say is that it won't be thalidomide (or any other drug) if it's just one hand effected. It effected both.
As an adult he might be having other issues relating-back issues (from twisting to use the good hand), shoulder issues (on left hand side if wearing prosthesis), issues with right hand side (overuse of good hand).

Watching this (paraclimber-he's 15yo) might give you an idea of how capable people can be with one hand. he was born like that.
www.youtube.com/watch?v=4_s5oSCATC8

Kai1977 Sun 04-Dec-16 11:09:25

Wow thank you all for all your help and advice.

Outrageous I've bought your book, can't wait to start reading it (and I'm always in awe of anyone who's managed to get something published)!

Witchend Thank you for taking so much time to go into the detail. Lots to think about and work my way through now!

Kai1977 Sun 04-Dec-16 11:15:23

Oh and Witchend he'll be a 22 year old man as of 1972 so I think some of the issues you mention for adults would apply (honestly hadn't occurred to me at all until you mentioned them). I'm thinking about making him a photographer but need to have a look at the SLR cameras of the time to check how they're operated.

I don't think he'll wear a prosthesis (just not how I imagined him in my head)!

JustAnotherPoster00 Sun 04-Dec-16 11:23:48

My friend has a similar disability OP cant feel or use his left hand after a car crash, in his words he hates the fact that people give him the 'stare' (where they try nd keep looking but try and not make it obvious) he now gets me to introduce him to people with 'this is my friend, friend wave ur floppy hand at them' he loves their reaction and he says it gets it out of the way.

Hope that helps OP

Witchend Sun 04-Dec-16 13:47:19

I don't think operating a camera would be a problem if he has his right hand-they're usually set up for right hand operation. Dd2 has been using a camera (not slr though) since she was 4yo with as much success as either of my other children.
He would be able to use his little arm for balancing the camera (as my dd does for playing her trumpet).
More people of that era did wear prosthetics if it was possible for between elbow and wrist. However the closer to the wrist is less likely, and if there's not enough below the elbow for the prosthesis to fix onto without restricting the movement of the elbow, that again becomes less likely.

The stare is something that does happen a lot. I think I most notice it in the queues at LEGOLAND where you get children bending round to look and occasionally (we're talking about plenty old enough to know better) trying to grab hold for a better look. hmm
Younger children (preschool) either don't notice or are just interested. Older children are more obvious and more offensive. Adults usually just take a second look. They do sometimes ask what happened -often if they have friend/relative that is similar (usually through meningitis), but they tend to ask me rather than dd2. dd2 tucks her little arm into her body when it's bothering her.

Madhairday Wed 07-Dec-16 14:09:01

Ooh Outrageous I'm going to download your book, sounds really good.

My novel in progress includes some stuff about disability but from a Dystopian standpoint so the rules are a little different. I found the book 'wonder' by RG Palacio a fantastic novel with themes of disability, worth a read?

Good luck with your writing!

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