Me answering so NaNoWriMo forum questions again. This time on writing about a disabled character.
First, The Question Asked: NaNoWriMo RE: Living with Paralysis?
My main character’s boyfriend is paralyzed below the waist (and has always been), and uses a regular wheelchair to get around. He is not necessarily a sedentary character though–he enjoys going out on the town as long as the places have proper accommodations, he lifts weights to build arm strength, and he sometimes has a race or two against the main character (who roller-blades). He doesn’t have to worry too much about stairs–his house has one floor, and is well-suited to his needs.
+ So first of all, I need to know how someone like him would get in and out of bed (and go to the bathroom, take a shower etc.) I looked on Google, and they said that people in his situation have aides (or in his case, his parents) to help them–but if it’s possible, I’d like him to have an alternative method of doing things besides just “getting help from someone else.” (P.S.: upper-body strength is NOT a problem!)
+ Second of all–I don’t know how anyone would KNOW this, but it’s worth a try–do you think it’s plausible for a wheelchair and a roller-blader to have races like they do? Would one of them have a distinct speed advantage no matter what, and win almost all the time? Or would it all be dependent on the skill level of either racer? Is his lifestyle even plausible?
+ And finally: I read this in a book one time, but I completely forgot how it was done–if he fell out of his chair, how would he instruct someone to help him? I have a scene in the end of the story where this needs to be done, and I have a general idea of how it’s going to go. I just want to be sure.
And Now, My Answer To that Question: My uncle is in a wheelchair. Paralyzed from the waist down. His wife has to do everything for him – pick him up, carry him out of bed to his chair, etc. He can not use the toilet at all (being paralyzed from the waist down – means he had no muscle function and thus ZERO ability to “go”. Instead he has to have a catheter which is like a really big IV tube – one going up through his ass, the other his penis – to pump out wastes and act as muscle replacements – they drain into a plastic bag that is strapped too his leg and runs down the length of his leg inside his pants. (Paralyzed from the waist down mean you’ve got a paralyzed bladder and intestines too! – it also means he has a strict, near liquid diet – no intestinal movement, means no ability to remove solid wastes without surgery.) Someone – usually his wife – has to change these tubes and empty the bags 4 or 5 times or more per day. He can’t take a bath or a shower, instead has to have sponge baths from bed. Upper body strength has nothing to do with it – from the waist down means you can not sit up on your own, no matter how strong your arms are.
Legs only paralyzed sounds like what you are describing – legs only would still be able to do stuff on his own, and could still rely on upper body strength, could still bath himself, use a toilet, dress himself, etc. Waist down – not physically possible AT ALL!
Also – there are much greater things than stairs to worry about – very few houses are sized/equipped for a wheel chair – doors not wide enough, rooms not big enough (remember – to turn around the wheelchair needs at least 4 times it’s diameter, just to make a full swing!) A wheel chair bound person paralyzed from the waist down will usually have the living room turned into his bed room and will never again go into any other room of the house – unless of course he’s a millionaire and can afford to have all the walls knocked out and the rooms doubled in size, and the base of door frames removed (even the slightest bump will flip a wheelchair!).
Sidewalks are near impossible to use – to many cracks and dips in the surface, also brick and cobblestone walks are out of the question – the slightest unevenness in the surface will flip a wheelchair. Going up or down even slight hills, not possible either. In all of these cases, an assistance would be required to steady and brace the chair, basically holding it upright as it moves.
Manhole covers, drain grates, and sidewalk-underground-lifts/elevators must all be avoided – 2 reasons, one the openings/edges catch wheelchair tires and cause the chair to flip forwards; 2 they produce static electricity and will electrocute the guy in the chair – this is a VERY, VERY serious problem, because someone with only half their body function is prone to heart problems, and while a normal person would only get a mind “zap” shock, a paralyzed person could die on the spot of a massive heart attack. My uncle did not believe this – used to say it was an urban legend, until one day he went across a manhole cover and had to be rushed to the hospitable in a near coma from static shock.
Something to consider – a waist down paralyzed person who falls out of his chair will be more worried about how to get someone to call him an ambulance than how to get someone to help him back into the chair. Lack of waist muscle means lack of diaphragm muscle – and thus lack of normal lung movement – he’ll be on oxygen because his waist region muscles will not be pushing on his lungs. Once flat on the ground his lung will stop working, and he’ll not be able to breath let alone talk. He’ll need to be lifted into an upright position until the ambulance gets there. He’ll need to be rushed to the hospital to check to make sure the oxygen loss did not cause brain damage.
Also – as you just saw – upper body strength is going to be highly unlikely, because it requires good lungs and without your waist muscles and diaphragm to push on your lungs, you will be lucky if you can breath without a tank strapped to the back of your chair.
I would like to point out though – again – waist down – no, he can’t race, not unless he has a remote controlled electric wheel chair and those move very, very, VERY slow – snail’s pace at best – most people walk faster. Again – that would be someone with legs paralyzed NOT waist down paralyzed who could race. He would need the ability to bend his waist forward to push the wheels of the chair – waist can’t be bent forward if it is paralyzed! Someone paralyzed waist down would NOT be using a hand pushed wheel chair, again, not a matter of upper body strength, but a matter of a lack of WAIST muscle – upper body strength with out the waist muscle to support it is worthless and actually not scientifically plausible — possible, but highly unlikely and extraordinarily rare. He’d be turning the wheel 2 times for every inch moved. Each turn would require him to lean forward, grabbed the wheel, push it down, leaning his upper body down against his knees, and than letting go of the wheels and using his waist muscles to push himself back upright, than grab the wheel again – someone waist paralyzed has no waist muscle movement and thus no ability to lean either forward or backward.
Someone paralyzed from the waist down would be in a monster sized electric wheel chair – these things are big, most as big as a motorcycle, most can not fit through doors of the average house. These do not have the big wire spoke wheels you can reach down and turn on your own, but instead small “car tire” wheels about 8 inches in diameter. The guy would be harnessed into the chair with a harness belt wrapped around his waist, chest, and shoulders. This harness keeps him upright and stops his upper body from flopping around. (Remember – no waist muscles to support his chest, means without the harness his head will be too heavy for his spine to support and his upper body will always be flung forward with his face resting on his knees any time the harness is removed! Your waist muscles do an awful lot of supporting you – without your waist your upper body strength ain’t worth shit and in fact the more upper body muscle you have, the closer your face is going to be to the ground, because all that chest/shoulder muscle makes you top heavy and there is no waist muscle to keep it upright.)
I think, what you are describing is someone with both legs paralyzed which is markedly different from someone paralyzed from the waist down. He’d still have use of his waist muscles and thus would have the big spoke self pushed wheel chair needed to race a roller bladder, and would still be able to get out of the chair to use the toilet on his own, and he’d be able to bath himself, since he would have waist movement still and thus the ability to sit up on his own.
They do sell racing wheelchairs – they have 3 wheels and are long and skinny and low on the ground. They use them in Special Olympics races. But they are for people paralyzed from the hips or thighs down, not from the waist down. You might want to check out info about The Special Olympics.
Of course, in the future, and in a sci-fi, who’s to say there isn’t some way to get around all of these things? Medical science invents/discovers new things every day, so you can be creative and still be accurate at the same time, by explaining things away as a medical advancement. ;) In any case, good luck on your story.
I hope this info helps you out some.
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This article originally published in September 2009, under the title NaNoWriMo RE: Living with Paralysis?is copyright to Wendy C. Allen and The Twighlight Manor Press, and is reprinted here with permission.