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New blog post by Vagabond Heart – discussions in this thread, please
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(Disclaimer: although not politically perfect, I’m going to use the familiarity of the term ‘disability’ rather than, say, ‘differently abled’ in this post.)

I’m gonna say, straight up, that I can’t tell you how to write about disability, primarily because everyone’s experience is different. But I might be able to give you some food for thought that could help you in this endeavour. I have familiarity with only two disabilities, neither of which are visible, and neither of which is fashionable in the media. So, I’m no expert, obviously. But still, I think this is something that should be discussed.

I am someone who cannot be considered in the first flush of youth. If I’m honest, I’m well past the frequent flushes of middle age as well. So, we can conclude I have a bit of history. I’m not mucking about, then, when I tell you that people in wheelchairs were almost never seen on TV when I was a kid. Nor were any other disabilities present. Except, of course, blind or deaf people, and they were mainly used as the punchline in (offensive) comedy sketches, or as the point of a horror movie (blind girl can’t see her attacker, oh no!).

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What has happened since is what always happens with marginalised minorities – they made their voices heard. Films, dramas, and literature started describing life from their point of view. And, frankly, not a minute too soon. Now the pendulum finally got to swing the other way, and instead of being left out, their experience became the central theme.

This was all well and good, but it took decades before the pendulum settled, and disabled characters just started cropping up in things simply because they are part of normal, human society, not because they had a plot-point to prove. You’ll notice the same thing happened with people of different races, or different religions. Anything that is not the average person’s experience took a while to filter through. Sad, but true.

When I was a kid, the ridiculous ethos was this – disabled people can’t do the same as the rest of us. I mean, what utter nonsense. Now the ethos is this – disabled people can do anything that the rest of us can. And this is true, obviously. But what may be missing from that statement is this: they often have to do it differently. Their challenge is to achieve whatever they want to (just as it is for us). But if we think the route they take is the same as ours, then I suggest we may be mistaken.

Have a think about TV shows like Strictly Come Dancing and Dancing On Ice. Both these shows have featured wonderful people with vastly different types of disability. But prosthetic legs, for example, mean they can’t alter the pressure of the foot, that their centre of balance is different, that their limbs may be different weights which affects their ability to spin, and a whole host of other things. WHAT they achieve may look the same, but HOW they achieve that is a whole set of challenges that you and I have never faced.

And that is one of the things that seem to be missing from how disability is presented to us in the media these days. Unless it is the theme of the piece, they are treated as if their disability is of no more distinction than how they choose to style their hair. Are we expected to imagine that every London Street (and yes, I’m thinking of you, Albert Square) is a doddle to navigate in a wheelchair?

I not stupid enough to think I speak for any other disabled person than myself. But even my own, small, experience has me questioning how much I may be missing about someone else’s. And, as writers, isn’t that a concern for us? Shouldn’t we, at least, be giving voice to things that give our world it’s humanity?

Add to this the fact that only some disabilities are commonly represented. The more visible ones. Or the interesting ones. Or however the media-moguls like to categorise them. This may not seem like much of a problem, but I wonder if it’s a fair and honest representation of the world we live in.

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Consider this: I have had experience of depression (quite severe, occurred after the birth of a baby, and lasted 25 crippling and sometimes suicidal years due to my hormones having gone batshit) and the health problems it caused (have had Chronic Fatigue Syndrome – CFS – for over 30 years now).

Here’s an example of how CFS is thought of. We lie in bed a lot, are too weak to do anything, and often need a wheelchair. Now, this can be true of a lot of people – I’m not suggesting otherwise. But it is far from the whole story.

Because CFS is about equations.

Before I had this, I would divide my day/week/month/whatever into allocated chunks. X-amount of time was spent at work, and Y-amount of time was split between the chores I had to do, and things I wanted to do. The equation was based solely on hours in the day. If I failed to achieve what I wanted to, it was because I was distracted, or had found a different priority, or was just plain lazy.

Now I have CFS it’s a whole different type of maths.

Each morning I wake as tired as I went to sleep. If not more so. The first question of the day is how many energy-chunks do I reckon I have? I will usually consider this whilst giving myself a power-up (a caffeinated drink). The power-up will get me out of bed (minimum power-up charging time is around 30 minutes) and last until I’m dressed. Then I’ll need a sit-down. Can’t use too many caffeine power-ups because they lose all effectiveness, plus they stop me sleeping.

Working from experience, I’ll figure out that maybe five energy chunks is my maximum for that day, so I’ll prioritise what to use them for. Two for cooking, one for washing up or making the bed (not both), one to get up town to post that letter I’ve been putting off for a week, leaving one for me to ‘spend ’on something else. Today’s reckless spend is this blog post.

Unexpected things will cause a power-drain. Rain. Cold weather. Both terrible power-drains. Having to go to more than one shop to get what I need. Spending too much time with negative people. Realising I must fill up my car with petrol or I won’t get home. Or worse, having to pump up the tyres – that’s a double power-drain, don’t know why, just is. And having a nightmare – colossal power-shortage, instantly.

But, on the upside, I can get unexpected power-ups too. Anything that makes me laugh – big extra energy chunk, sometimes two. A kind but sincere note from someone I haven’t heard from in a while. Finding exactly what I was looking for in a charity shop. The last chapter of a wonderful book. Hearing a song I’d forgotten I loved, and dancing in the shop where it’s playing. Achieving something I’ve been working on for a while. All power-ups for me.

What I’m getting at is this: I may seem, on the surface, the same as anyone else. My disability is invisible to everyone except those who know me well. But underneath, the approach I’m taking, and the equations I’m having to live by, are different to yours. I know, without a shadow of doubt, that living in my world means employing levels of acceptance, positivity and courage that I never had need of before. Ergo, I am a stronger person now than ever I was.

And this is just one example, of one person’s experience, of one illness. Disability comes in many colours. It’s a mistake to think we know what’s going on beneath the surface unless we’re very familiar with being around it, or have done the research. Would my strength be shown in films where the character is draped in bed, too weak to get up? Hardly.

FYI, I’m not expecting any character with CFS to pop up in any film or book, in the near future. Frankly, it has almost zero plot-value. I get that. But as we move towards more exclusivity in our work, as well as in our world, I think it’s worth keeping in mind that real representation isn’t just about sticking someone in a wheelchair in the office scene of your new screenplay.

Let’s dig a bit deeper, ok?
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By @Vagabond Heart
Get the discussion going – post your thoughts & comments in the thread below…
 
OMG, I have been editing a website for a woman with multiple disabilities, me for decades and her for her life. Cerebral Palsy and dyslexia... but a beautiful heart and a clear mind that cannot express itself in words without some help. She taught fitness and dance for decades...

Needless to say, she has not been disagnosed with CFS, but she surfs over an ocean of fatigue.
 
Great post, Bev (you've been to hell and back, hugs xx r). Definitely, worth a discussion :)

If I've learnt one thing from living with severe disability for over a decade - it's that you have good days and you have bad days. That is a challenge to write because looking from the outside in, people see a disability and expect certain ailments will remain the same (so readers will also make this error in their expectations too), but ailments differ from day to day. If you think about it and consider yourself, it's the same for you. You also have good and bad days within the parameters of your own health. The good and bad days just manifest differently for the disabled.

A couple of examples from carers I've had complain to me in the past about other clients, but in reality, the problem isn't the client, it's the carer not understanding the illness and placing "expectations" on the disability:

1. "She rammed into me with her electric wheelchair and just kept jamming me into the wall. She wouldn't reverse. Look at the bruises on my shins." Sounds malicious huh? Now let's add context to the story. The lady in the wheelchair has MS. What if she was having an attack? What if she had tremors? Sound malicious still? What sounds more likely - was she deliberately hurting the carer or was she affected by her disability?

2. "She has all this equipment and a wheelchair but I saw her running up stairs. I think she's defrauding the system." Because, let's face it, you'd want a free wheelchair cluttering your apartment if you're a mum with young kids, wouldn't you? Again, this lady had MS. Again, this disability not only has good days and bad days, it has good months and bad months. And it's a potentially deteriorating disease.

If someone limps one day, it doesn't mean they limp everyday. It may, but it might not. I feel our mindset (including mine) is set to expect a status quo, when the mindset should be the opposite. When I first heard those stories, I totally bought the carer's version of events, but over the years the veil of my naivety has dropped.
 
Great post, Bev (you've been to hell and back, hugs xx r). Definitely, worth a discussion :)

If I've learnt one thing from living with severe disability for over a decade - it's that you have good days and you have bad days. That is a challenge to write because looking from the outside in, people see a disability and expect certain ailments will remain the same (so readers will also make this error in their expectations too), but ailments differ from day to day. If you think about it and consider yourself, it's the same for you. You also have good and bad days within the parameters of your own health. The good and bad days just manifest differently for the disabled.

A couple of examples from carers I've had complain to me in the past about other clients, but in reality, the problem isn't the client, it's the carer not understanding the illness and placing "expectations" on the disability:

1. "She rammed into me with her electric wheelchair and just kept jamming me into the wall. She wouldn't reverse. Look at the bruises on my shins." Sounds malicious huh? Now let's add context to the story. The lady in the wheelchair has MS. What if she was having an attack? What if she had tremors? Sound malicious still? What sounds more likely - was she deliberately hurting the carer or was she affected by her disability?

2. "She has all this equipment and a wheelchair but I saw her running up stairs. I think she's defrauding the system." Because, let's face it, you'd want a free wheelchair cluttering your apartment if you're a mum with young kids, wouldn't you? Again, this lady had MS. Again, this disability not only has good days and bad days, it has good months and bad months. And it's a potentially deteriorating disease.

If someone limps one day, it doesn't mean they limp everyday. It may, but it might not. I feel our mindset (including mine) is set to expect a status quo, when the mindset should be the opposite. When I first heard those stories, I totally bought the carer's version of events, but over the years the veil of my naivety has dropped.
Totally true.
Government agencies, in particular, have the mind set of ‘all days should be the same’.
As CFS is an autoimmune disease, any contact with people automatically means I’ll have a couple of bad days after.
I pace myself so I can rest up before and after any social event. But people only judge me on how they see me on my good days.

And you’d know this, but you get used to pain, don’t you. I sometimes use this as an example to people to explain what it’s like — I once had a chest infection, then I got a throat infection as well, and finally an ear infection on top of that. But it wasn’t until I got the ear infection as well that I went to the doctor. Just having both a chest and a throat infection felt like a ‘normal’ day.
 
Oh Bev, such a thought provoking blog post. Thank you for using one of your precious energy chunks on writing it. I am amazed by you. Now not only by what I knew of you before. Things like your quick wit, insightful creative nature, and your kindness and generosity but now also the way you must navigate your life and your strength and courage to do it. It certainly is worth the discussion to know the many ways people are visibly or invisibly managing their lives, practically and emotionally. It’s been illuminating for me. We definitely must dig a little deeper! Xxx
 
This really resonates for me! While I don't have CFS, it does sometimes feel like ageing poses many of the same challenges. Additionally, I have single-sided deafness following brain surgery a few years ago, which adds to the exhaustion of everyday life.
Love how you identified the 'chunks' of time and energy that each day allows. I am trying to curtail my to-do list and learn to be satisfied with what I do achieve rather than focusing on all the unticked boxes.
Kudos to you, Bev, for being so generous with your time in critiquing other writers' work here on Litopia!
 
This really resonates for me! While I don't have CFS, it does sometimes feel like ageing poses many of the same challenges. Additionally, I have single-sided deafness following brain surgery a few years ago, which adds to the exhaustion of everyday life.
Love how you identified the 'chunks' of time and energy that each day allows. I am trying to curtail my to-do list and learn to be satisfied with what I do achieve rather than focusing on all the unticked boxes.
Kudos to you, Bev, for being so generous with your time in critiquing other writers' work here on Litopia!
It's a bit like spinning plates on sticks, isn't it?
When I was at my worst, I used to count it a good year if I got to finish 2 projects.
Thank God it's better than that now, lol.

On the downside, I don't get much done.
But on the upside, I now have the discipline to stick with one thing until I've finished it, which is a skill I never had before.

Sorry to hear you had to have brain surgery - I'm sure many thing have been unbalanced by that.
And please continue to value what you do achieve (rather than measure what you didn't).

When I was at college, 15 years ago, I started a charity collection in the last term. My group were so awesome that I wanted us to do something that we'd be remembered by. Each Monday I'd take round a plastic bag, and they'd all tip any loose change they had into it. Our goal was to build a fresh-water well in a remote village in Pakistan.
By the end of term, we had collected enough to fund two wells, and three smokeless fuel stoves.
And a lot of the money was in 1p and 2p pieces.

I'm telling you this because little things add up to bigger things. It may seem slow. But the results can surprise you.
xxxxxx
 
Totally true.
Government agencies, in particular, have the mind set of ‘all days should be the same’.
As CFS is an autoimmune disease, any contact with people automatically means I’ll have a couple of bad days after.
I pace myself so I can rest up before and after any social event. But people only judge me on how they see me on my good days.

And you’d know this, but you get used to pain, don’t you. I sometimes use this as an example to people to explain what it’s like — I once had a chest infection, then I got a throat infection as well, and finally an ear infection on top of that. But it wasn’t until I got the ear infection as well that I went to the doctor. Just having both a chest and a throat infection felt like a ‘normal’ day.
OH my goodness, Bev. That's very telling example.
 
I always remember the line, "Your lateness has a sort of greatness to it" directed towards Hugh Grant's character in 4 Weddings and a Funeral. I had no idea about ADD until I had my kids, then I learned about my own brain in figuring out theirs and forgave myself much.

The first connecting piece of the jigsaw for me was learning that a nerve synapse can collapse like an overworked muscle.

The teachers kept saying my son was doing fine at the end of his first year of primary school but when I learned he couldnt count past three or remember more than ABC I knew there was something wrong. The kid knew so much stuff that a neighbour called him the little professor. So I began teaching him, the way I'd learned, repetition with some story. It worked counting his fingers the first time-he got to ten. The 2nd time was slower, the third time he started crying and hitting himself in the head with the book.

When I found Lindamood Bell I learned why. With great effort someone can make the necessary neural connection the first time, but the effort costs the nerve endings, finally they collapse like a marathon runner crossing the finish line who can't take another step.

I realised probably generations of teachers and parents had accused children like me, and my son of laziness when we were trying so hard that our brains broke down from exhaustion. So I really get the blocks of energy concept.

In Lindamood Bell they begin teaching in as little as one minute increments. Then there's a reward of physical exercise to release stress. My son worked up to 15 minutes on and 15 minutes off the first year. By the 2nd year when he was 7 he could do 45 minutes or what 5 year olds are expected to do for a full day when they enter the school system.

I was amazed how much he could retain with the system of active learning. School was never more than 4 blocks of 45 minutes a morning then the rest of the time he came home and "played". By the time we left the US for Switzerland both my sons tested as 'Post High School', on the US placement exams. Which just meant they scored so high the computer had no category to dump them in for that grade level.
 
I always remember the line, "Your lateness has a sort of greatness to it" directed towards Hugh Grant's character in 4 Weddings and a Funeral. I had no idea about ADD until I had my kids, then I learned about my own brain in figuring out theirs and forgave myself much.

The first connecting piece of the jigsaw for me was learning that a nerve synapse can collapse like an overworked muscle.

The teachers kept saying my son was doing fine at the end of his first year of primary school but when I learned he couldnt count past three or remember more than ABC I knew there was something wrong. The kid knew so much stuff that a neighbour called him the little professor. So I began teaching him, the way I'd learned, repetition with some story. It worked counting his fingers the first time-he got to ten. The 2nd time was slower, the third time he started crying and hitting himself in the head with the book.

When I found Lindamood Bell I learned why. With great effort someone can make the necessary neural connection the first time, but the effort costs the nerve endings, finally they collapse like a marathon runner crossing the finish line who can't take another step.

I realised probably generations of teachers and parents had accused children like me, and my son of laziness when we were trying so hard that our brains broke down from exhaustion. So I really get the blocks of energy concept.

In Lindamood Bell they begin teaching in as little as one minute increments. Then there's a reward of physical exercise to release stress. My son worked up to 15 minutes on and 15 minutes off the first year. By the 2nd year when he was 7 he could do 45 minutes or what 5 year olds are expected to do for a full day when they enter the school system.

I was amazed how much he could retain with the system of active learning. School was never more than 4 blocks of 45 minutes a morning then the rest of the time he came home and "played". By the time we left the US for Switzerland both my sons tested as 'Post High School', on the US placement exams. Which just meant they scored so high the computer had no category to dump them in for that grade level.
Oh good heavens, PJ, I had no idea. How distressing it must have been for you and your sons. I’m so thankful you found a solution. Although, saying that, I’m not surprised you pushed until you found one — you are a true warrior woman. I admire you enormously.

With CFS, the enzyme (I forget what it’s called) that carries the food molecules into the mitochondria of the cell (where it would get burnt to make energy) gets unaccountably switched off. The body then tries to get around that by breaking down muscle, or making you crave sugar (so your blood has a constant supply in it).
There have been days I’ve been too weak to left a cup of tea. As for brain fog, don’t get me started.
But knowing what is going on in my body has really helped me accept the bad days. And it’s also stopped me from following stupid advice set by out of date medical thinking (eg. A system of graded exercise, where you’re supposed to ‘build up’ your tolerance by doing a little more each day). Knowledge is power, right?

I’m so glad your sons had you, with your fortitude, intelligence and heart, to guide them through.
Xxx
 
Oh good heavens, PJ, I had no idea. How distressing it must have been for you and your sons. I’m so thankful you found a solution. Although, saying that, I’m not surprised you pushed until you found one — you are a true warrior woman. I admire you enormously.

With CFS, the enzyme (I forget what it’s called) that carries the food molecules into the mitochondria of the cell (where it would get burnt to make energy) gets unaccountably switched off. The body then tries to get around that by breaking down muscle, or making you crave sugar (so your blood has a constant supply in it).
There have been days I’ve been too weak to left a cup of tea. As for brain fog, don’t get me started.
But knowing what is going on in my body has really helped me accept the bad days. And it’s also stopped me from following stupid advice set by out of date medical thinking (eg. A system of graded exercise, where you’re supposed to ‘build up’ your tolerance by doing a little more each day). Knowledge is power, right?

I’m so glad your sons had you, with your fortitude, intelligence and heart, to guide them through.
Xxx
Thank you, so much. What was distressing is seeing my sons dismissed in Boy Scouts etc as stupid. Speaking of gov lumping people w disabilities I was in Walmart and saw the "special bus" kids. Two had Down Syndrome, one in a wheelchair, cerebral palsy, and two boys one about 11 and the other maybe 7 with no apparent disability. They were being taught to make change at the counter. All at once. No differentiation. I could see the rage radiating off the two boys and it was clear why cities decide how many jails and mental health facilities they will need by how many boys are in spec ed.

I have wondered if I have some mitochondria problems. Right now am Ok. I take DIM and lately Lions Mane. Was diagnosed with low blood sugar when I was at uni and the medical advice was to take a sugar lozenge.... instead I cut out all sugar, refined carbs, and coffee for several decades. The only way I could stabilise.

Take care of yourself, you are a precious resource, friend. The only honest use for AI I can see is making it easier to remember things and keep on track. Help us finish our books AI.
 

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