Firstly, like my main character Mac Maguire, I identify as being disabled. However, I’m not in a wheelchair like the sign says. Why on earth a depiction of a very specific disability is used for all disabilities is beyond me. We need a new sign but we also need some new words.
I joined the venerable Society of Authors a few years back and I’ve found it very useful. It’s even more useful now as another author and myself suggested that an online group for disabled writers might be a good thing. With lots of help from the Society we eventually got it up and running and we called it Authors with Disabilities and Chronic Illnesses or ADCI for short. It took us quite a time to come up with the name as we wanted to ensure that it wasn’t just for ‘traditional’ disabilities but would also include writers who are struggling because of various health conditions. Since we’ve gotten the group up and running we’re finding that a good percentage of our members have fatigue issues caused by conditions such as Myalgic encephalomyelitis/chronic fatigue syndrome (ME-CFS). This is getting some space in the news as many people are now suffering from similar symptoms after contracting Covid 19.
Words that were once used to describe disabilities are a minefield and you need to very careful which ones you choose. Words that used to describe people with disabilities such as spastic, crippled, retarded, midget or insane are now seen as being insulting. The old rhyme about sticks and stones isn’t true. Words can hurt and they can hurt very deeply. A lot of words used in past years were used precisely because they were demeaning and they reminded a disabled person that they were not ‘normal’, whatever that is.
Recently a member has posted about terms that might be considered safe and, possibly, even PC when describing discrimination against disabled people. The terms used were ‘disablism’ and ‘ableism’ which are sort of supposed to mean the same thing (I think?). This got me thinking.
I really don’t like the word ‘disabled’. In English the ‘dis-‘ prefix is almost uniformly negative – disgusting, dislike, distrust, discard, disappointment, discouraged etc. It’s also not very descriptive and I think that, in most people’s minds, it implies some sort of physical disability. So, if you’re not in a wheelchair or have a leg missing, you can get some funny looks. I was just as disabled before I got my crutch as I was afterwards. It’s not so much to help me walk as to stop me falling as I have severe numbness in one foot. Yet, once I had the crutch, people actually believed me when I said that I was disabled. However, if I had something like ME/CFS, I’d look completely normal and it might be an uphill struggle trying to explain what the issues are in having such a condition to other people.
I asked my fellow authors if we could come up with something better that ‘disabled’ and ‘disablism’. One of our braver members is happy to describe themselves as a ‘crip’ and is thus reclaiming a quite hurtful word. I, however, am not so brave.
It is now the middle of the night and I can’t sleep because I had an idea. Every disability is different, even when people have the same conditions, so I thought about how one might describe this. I thought about my own health issues and how they’ve affected me. Chronic pain issues in my damaged lower spine are limiting in themselves but this condition also affects my mobility as sometimes the pain is so bad that I literally cannot take a step. Beyond that, I also have numbness in my left foot which means that I’m never sure exactly where it is. A trip could be disastrous and, at best, might still lead to 4-6 weeks in bed with increased pain levels.
So, what is the actual effect of all this on me? My health limits my options. I can wake up and look out of the window and think about what to do on such a lovely day. I can’t go running or rock climbing or bungee jumping or even walk into town. On a good day I can walk a couple of hundred yards, on a not so good day less and, on a bad day, not at all. So my options are limited. As my condition isn’t going away I am, in effect, ‘life-limited’.
I much prefer this term to ‘disabled’ as it doesn’t sound so negative and it is, after all, true.
So, a ‘normal’ conversation might go something like this –
Person looks at crutch. ‘Are you disabled then?’
‘Yes, I’m disabled.’
‘Leg, is it?’
This is where I sigh, roll my eyes and look up to the heavens. I now have to go into a full-blown description of my issues, most of which will not be understood.
‘No, it’s not the leg as such, it’s my back. My vertebrae and discs are all damaged and this means…’ etc etc etc
Perhaps, another conversation might go like this –
Person looks at crutch. ‘Are you life-limited then?’
‘Yes. I’m pain and mobility-limited.’
It’s simpler, isn’t it? That’s because I’m describing my limitations rather than my condition and this immediately gives the other person a good idea of what those limitations are. Of course, the answer might be ‘neurologically-limited’ or ‘fatigue syndrome-limited’ or just ‘mobility-limited’ but any of these is better than trying to explain often complicated conditions to a layman. Of course, a person might also drop the ‘limited’ bit in the answer and say ‘I’m autistic’ or ‘I’m Deaf’ or ‘I’m colour blind’ which also succinctly describes their limitations. I think that there needs to be some flexibility so that each ‘life-limited’ person can come up with a personal descriptor that they are happy with and that will hopefully inform others too.
I think this approach might also help to widen our appreciation of what is ‘life-limiting’. I have known people who have severe phobias and that has limited what they can do, sometimes quite severely. They are ‘life-limited’ too. There are lots and lots of ‘invisible’ disabilities and I think these must be the hardest ones to bear as people are often not believed. These are all ‘life-limiting’ and, using new words in this way, might also allow us to change the definition of those words too.
So a little glossary –
‘Life-limited’ – Disabled
‘Non-limited’ – People who do not have a disability
‘Anti-life-limited’ – Discrimination against disabled people or bias towards able people
It’s now 5: 47 and I might try to get some sleep. I’d be interested in hearing what you think so please leave a comment.