Help with a Disabled Character

LittleMissAlice · Jan 22, 2018

I'm attempting to write a YA contemporary novel where one of the three MCs is physically disabled. So first off, I made a really big mistake with this character and that was developing her before I had all the facts.

She uses a wheelchair to get around but she has pretty much full control of her upper body. (basically no control in her hips and legs except for a few very minute movements) I pegged her with a form of muscular dystrophy just because... well that's what I have and I can always change it, right? It's just a placeholder until I figure out a disease that matches her symptoms. OH YEAH SURE. Well now she's got a whole character arc (or whatever you want to call it, I don't really know) and it pretty majorly effects her character. As you can see, I'm freaking out because I can't even write a proper sentence. (what even is pretty majorly???)

Essentially, my question is, is it acceptable to say that she has a very rare form of muscular dystrophy that they don't really know anything about since I haven't been able to find a disease that matches her symptoms or is there some kind of rule about basically making up a disease?

SimaLongfei · Jan 22, 2018

I think you always have a little bit of leeway in making things up in a story, if they're what you need. Suspension of disbelief is more a game of illusion, smoke, and mirrors than trying to study textbooks. Play it right, then I think you can have your readers accept that, in the realm of the story, this disease is a thing.

That said, would it not be easier to change the disease to an accident? Something that injured her spine below a certain point? What is it about muscular dystrophy that you need for your plot to work?

cmhbob · Jan 22, 2018

SimaLongfei said:
I think you always have a little bit of leeway in making things up in a story, if they're what you need. Suspension of disbelief is more a game of illusion, smoke, and mirrors than trying to study textbooks. Play it right, then I think you can have your readers accept that, in the realm of the story, this disease is a thing.

That said, would it not be easier to change the disease to an accident? Something that injured her spine below a certain point? What is it about muscular dystrophy that you need for your plot to work?

Good suggestion here. A fall from a horse, bike, or ladder can easily cause a permanent injury. The Christopher & Dana Reeve Foundation has an interesting list of paralysis-inducing conditions. Transverse myelitis might work well for you.

folclor · Jan 22, 2018

I'm disabled, have multiple sclerosis. I'm in a wheelchair basically all the time. Lost my ability to walk about two and a half years ago or so. I would suggest looking into some sort of autoimmune disorder or something like that. But I'm a bit biased, haha.

mtj0000 · Jan 23, 2018

Muscular distropy could potentially become problematic for you in the long run. Predominantly because all forms are slowly progressive the disease generally results in the slow loss of muscle mass. If you are looking for a stable event a fractured spine most likely from a car accident could leave your character with very minimal movement in the legs, sometimes if people have an accident where the injury is incomplete and they still have some residual motion. Spina bifida is a congenital defect which can cause a variable degree of dysfunction of the lower limbs, cerebral palsy is another. Or if you want to get really creative you could give your character a factor five leiden disorder resulting in a blood clot cutting off the supply of blood to her lower spine.
There are a lot of different options you could choose, having said that it may be easier to stick with the disease you know. I know books are fictional and you can make up anything you like but they say the best fiction has just a little bit of truth and the greatest failing in movies is when the special effects are overdone to the point where they are unbelievable.

LittleMissAlice · Jan 23, 2018

Firstly, thank you all for your answers! I really appreciate it.

SimaLongfei said:
I think you always have a little bit of leeway in making things up in a story, if they're what you need. Suspension of disbelief is more a game of illusion, smoke, and mirrors than trying to study textbooks. Play it right, then I think you can have your readers accept that, in the realm of the story, this disease is a thing.

SimaLongfei said:
That said, would it not be easier to change the disease to an accident? Something that injured her spine below a certain point? What is it about muscular dystrophy that you need for your plot to work?

Since no one really has a good understanding of how her disease will progress, she (the character, Hazel), has grown paranoid after outliving the life expectancy that the doctors had given her. She feels like she's just waiting for death. This internal pressure keeps building up until eventually, it moves the first plot point into motion.

mtj0000 said:
Muscular distropy could potentially become problematic for you in the long run. Predominantly because all forms are slowly progressive the disease generally results in the slow loss of muscle mass. If you are looking for a stable event a fractured spine most likely from a car accident could leave your character with very minimal movement in the legs, sometimes if people have an accident where the injury is incomplete and they still have some residual motion. Spina bifida is a congenital defect which can cause a variable degree of dysfunction of the lower limbs, cerebral palsy is another. Or if you want to get really creative you could give your character a factor five leiden disorder resulting in a blood clot cutting off the supply of blood to her lower spine.

mtj0000 said:
There are a lot of different options you could choose, having said that it may be easier to stick with the disease you know. I know books are fictional and you can make up anything you like but they say the best fiction has just a little bit of truth and the greatest failing in movies is when the special effects are overdone to the point where they are unbelievable.

Honestly, I could probably rework it so that she does have an accident-induced spinal injury but (as far as I know) these types of injuries aren't progressive though please correct me if I'm wrong. I guess her having muscular dystrophy isn't essential to the story, she could have a different disease/injury, but, like you guys said, if I do decide to fabricate a form of muscular dystrophy it's based off my experiences and what I went through so I think that makes it more believable.

Lady Ice · Jan 29, 2018

I'd be wary of creating a new branch of an existing condition, unless the whole point is that she has a new and unknown condition. Is it a story about living with a condition or is the condition secondary to another story?

blackcat777 · Jan 29, 2018

PubMed is your friend. Dig, dig, dig, and you might be surprised about what you learn. Literally every aspect of every condition imaginable is documented with peer reviewed studies and discussed there.

It helped me heaps when I had to write about an injury and the healing process - it was something I would have taken lightly at first glance, but once reading the literature, there were all kinds of subtle long-term metabolic and psychological effects to explore, which made the idea a million times more compelling and authentic.

Research like this can be consuming, but I think it's worth getting right because it will add amazing richness to the ms.

That and, I live with someone in the medical field who can spot inaccuracies quickly, and if he finds one, it's all over, he's dropped out of the story and all I hear for the rest of the night is ranting and raving about how XYZ was so wrong, that could never happen, the story itself is completely forgotten. Inaccuracies can shatter the suspension of disbelief, which I think is worth considering, too.

frimble3 · Jan 29, 2018

Speaking solely as a reader, what I don't like is 'Love Story Disease': where the character has some unknown terminal illness, but remains pretty and fully conscious and talking right to the end. And the 'Deus ex Machina Ailment' where the character is disabled until, 'with a mighty effort, he willed himself out of the wheelchair to save the day'. If she goes from 'only a few movements' in her lower body to 'can walk far enough to stop the Big Bad', with no physio, etc, yeeah, you lost me.
Actual details of the ailment aren't as important for me, as long as they are plausible. But making up a disease just to get some special factor on the table seems to be unfair.

LittleMissAlice · Jan 31, 2018

Lady Ice said:
I'd be wary of creating a new branch of an existing condition, unless the whole point is that she has a new and unknown condition. Is it a story about living with a condition or is the condition secondary to another story?

Well, her character originated (partially) from me wanting to write about a character who's disabled but not wanting the entire story to be about that. Of course her disability effects the story because disabilities majorly effect people's lives but it's not about that. I just want to show that people with disabilities are human too which seems to be hard for "normal" people to grasp. (at least in my experience)

I do agree with you on being leary about creating a new branch of a disease though... I'm leaning more towards giving her a spinal cord injury...

blackcat777 said:
PubMed
is your friend. Dig, dig, dig, and you might be surprised about what you learn. Literally every aspect of every condition imaginable is documented with peer reviewed studies and discussed there.

It helped me heaps when I had to write about an injury and the healing process - it was something I would have taken lightly at first glance, but once reading the literature, there were all kinds of subtle long-term metabolic and psychological effects to explore, which made the idea a million times more compelling and authentic.

Research like this can be consuming, but I think it's worth getting right because it will add amazing richness to the ms.

That and, I live with someone in the medical field who can spot inaccuracies quickly, and if he finds one, it's all over, he's dropped out of the story and all I hear for the rest of the night is ranting and raving about how XYZ was so wrong, that could never happen, the story itself is completely forgotten. Inaccuracies can shatter the suspension of disbelief, which I think is worth considering, too.

Thank you! I'll have to dig through that website and see if I can find anything.

One of my biggest fears about writing this novel is it having any inaccuracies so I get it.

frimble3 said:
Speaking solely as a reader, what I don't like is 'Love Story Disease': where the character has some unknown terminal illness, but remains pretty and fully conscious and talking right to the end. And the 'Deus ex Machina Ailment' where the character is disabled until, 'with a mighty effort, he willed himself out of the wheelchair to save the day'. If she goes from 'only a few movements' in her lower body to 'can walk far enough to stop the Big Bad', with no physio, etc, yeeah, you lost me.

frimble3 said:
Actual details of the ailment aren't as important for me, as long as they are plausible. But making up a disease just to get some special factor on the table seems to be unfair.

I know what you mean and her role in the novel isn't to fill a love interest role or save the day. She's not going to miraculously walk again or anything like that. She's just an average teenager with a disability.

My intention with her character was to show, basically, that people with disabilities are humans too.

I used this made up disease as a placeholder until I could find a disease that fit the situation but ended up developing her character around this made up disease which was obviously a really bad idea.

Jan74 · Jan 31, 2018

I don't think it was a bad idea. Many people with progressive diseases stump doctors and modern medicine. I've met so many patients over the years that defy the odds. I think you were on the right track of having your mc have a medical condition, going for the accident might be the easy way out. Many people live with medical conditions maybe reach out to some online groups or blogs and see what people have to say.

My sister has Ehlers Danlos Syndrom and let me tell you that is one complex condition with many many many branches, she's in a wheelchair. If you took a more rare condition you might have more leeway with what you could push medically. When it comes to being a reader I'm sticky with the medical stuff and obvious things can really turn me off...but I think a well thought out branch of a disease could work.

Good luck with your novel, but my biggest piece of advice is to reach out to those who are in wheelchairs and have mobility issues. See what they have to say about things.

Raveneye · Feb 6, 2018

blackcat777 said:
PubMed is your friend. Dig, dig, dig, and you might be surprised about what you learn. Literally every aspect of every condition imaginable is documented with peer reviewed studies and discussed there.

It helped me heaps when I had to write about an injury and the healing process - it was something I would have taken lightly at first glance, but once reading the literature, there were all kinds of subtle long-term metabolic and psychological effects to explore, which made the idea a million times more compelling and authentic.

Thanks for this link! Currently writing a character with Savant Syndrome paired with mild autism paired with major PTSD. :tongue

It's been a challenge. Hoping the info here will add some more insights.

In other words, I commiserate, LittleMissAlice. Best of luck with your character!

Help with a Disabled Character

LittleMissAlice

we're all mad here

SimaLongfei

Have a laugh with me

cmhbob

Did...did I do that?

folclor

Left-Handed Writing Fairy

mtj0000

LittleMissAlice

we're all mad here

Lady Ice

Makes useful distinctions

blackcat777

frimble3

Heckuva good sport

LittleMissAlice

we're all mad here

Jan74

Raveneye

Hope and a Purpose