January 2017 – Unconventional Wisdom

Why we’ve got to stop pretending disability doesn’t exist

Britain is a nation that prefers to ignore what it doesn’t like. And it doesn’t like disability.

Britain is a nation that prefers to ignore what it doesn’t like. And it doesn’t like disability. We live in a society where people believe a number of erroneous things, on one level or another.

We believe we’ll never be disabled

First of all, we all think we won’t become disabled. I know I did. For a start, young people are known to believe they are invincible. And we think we’ll never be the 0.1% or the 1% or even the 10%: it’ll be someone else. We don’t, in general, make any kind of preparation, such as taking out income protection insurance, which provides you with a monthly income if you become too ill to work and your sick pay runs out. I’d never heard of this until recently, and once you have a condition of some severity, forget it, they’re not insuring you.

We also don’t really care about how rubbish government disability provision is. When I say ‘we’, I mean most people who haven’t had much contact with disability. If we did care, there’d be more fuss about how little the government provides, how difficult it is to access any provision, and how humiliating the process can be. There’d be more fuss about how the many of disabled people live in poverty [1], and how difficult it is to access the workplace, and how rubbish public transport can be. And so on.

There’s also a pervasive view that medicine can fix almost anything. People frequently seem surprised that doctors weren’t able to resolve my health problems.

We believe disabled people deserve lesser treatment

A wild claim? Is it really though? I think secretly a lot of people think that disability is often someone’s fault. Some of a hippy inclination think it’s all a matter of mindset. Others think a good diet (whatever their definition of that is) will solve everything. Others may even blame parents for bringing a disabled child into the world. And even those who think none of these things may think disabled people shouldn’t have access to affordable transport options and carers, at the taxpayers expense.

Having become a disabled person in my 20s, it sometimes amazes me how little people are sometimes prepared to do to adapt. For example, my local Abel and Cole delivery man was visibly not at all keen on taking the boxes of food to the kitchen, even though it only took up a minute of this time: maybe less. One day he just didn’t knock and left it all outside, despite knowing I’m disabled. I’m not alone in this: in one poll, 28% of respondents, all of whom were disabled, had experienced people refusing to make adjustments [2].

marcus-spiska-unsplash-basket-of-vegetables — Is it too much to ask for my ‘vegman’ to bring the box in my kitchen? Image by Marcus Spiska. Sourced from Unsplash.

The world often feels pretty unfriendly to disabled people. So many things could easily be adapted to our needs, but aren’t.

We see disability as black and white

People generally accept that someone who can’t walk at all is disabled. But shades of grey confuse them. Almost half of disabled people taking part in a poll said they had talked to someone who didn’t believe they were disabled [3]. A friend once told me that if people saw me getting out of my wheelchair and walking (which I frequently do) they’d think I was ‘an actress’. No doubt some think I’m some kind of benefit fraudster, so beloved is this conception (largely a myth: there are hardly any) [4]. Fact is, I can only walk 15-25 minutes a day without getting so much pain later that I can’t sleep. You can’t get far with 15 minutes, or indeed 25, so sometimes I use a wheelchair or mobility scooter. But the fact that when I walk, I do so completely normally really fries people’s minds. As someone once said to me, ‘It’s hard to believe you need a wheelchair when you get out and walk normally’.

Invisible illness is, in general, difficult for people to take in. This is compounded by our obsession with ‘fakers’. From teachers at school to bosses at work, anyone and everyone is liable to being labelled a faker when they take a sick day. Yes, people do fake sick days. But when you haven’t been faking, and you get treated like you have, it really sucks. You are expected to look and sound awful to ‘prove’ your illness.

I often hear the same sort of problem arising with people whose disability involves exhaustion. People see them weeding their garden and think they’ve recovered.

These perceptions raise dilemmas for the disabled person. I often wonder if I should try to look like I’m having more difficulty walking. I know someone who can only speak a short time before pain sets in. She sometimes doesn’t speak at all, using technology instead, rather than speak a little and then use the app, because people are less confused that way. One disabled person jokes about shouting ‘it’s a miracle!’ when she gets out of her wheelchair to get into her car, again highlighting how strange people tend to find intermittent wheelchair use [4].

Those with M.E. often seem to have the most problems with black-and-white thinking, as some can have patches where they’re fine, then be really ill for a while, and people sometimes think things like ‘well, if you just rest up before our dinner date, you won’t need to cancel’, which might not be the case.

wheelchair-and-feet-pixabay — The general public is not yet used to seeing a wheelchair user get up and walk. Image sourced from Pixabay.

We think it’s ok to phase out the disabled people in our lives

Since becoming part of online support groups for the chronically ill, I’ve discovered that chronic ill health is very often accompanied by isolation. We often see on social media ‘inspirational quotes’ like ‘cut out the negative people in your life; find those who energise and inspire you’. I fully understand cutting out an abusive, unsupportive friend, but these days many people will happily leave by the wayside anyone who’s inconvenient to meet up with or anyone who’s feeling depressed. Even an otherwise wonderful guy I dated at uni didn’t want to hang out with the disabled guy on his course. I’ve heard many a story from the chronically ill of friends just ‘disappearing’, stories that have brought tears to my eyes.

Why do people do it? Surely it must link in with what I said earlier about how we believe it will never be us in that position, and how we believe, perhaps only on a subconscious level, that it is somehow their fault. I am not completely immune to this myself, but I catch myself and think ‘come on, this is ridiculous!’

Many of the chronically ill suspect some friends disappeared because they are uncomfortable with the idea it could happen to them. I think this must happen, just as it does with elderly people. We want to be around happy, shiny people in a bright, perfect world, just like in the adverts. Many people will admit they fear death and so ‘just don’t think about it’, and I suspect much the same attitude is taken to disability. It’s a bit like avoiding hospitals. This is backed up by research which has found that 26% of non-disabled people tend to think of disabled people with awkwardness and discomfort. [5]

The reality is uncomfortable, but we urgently need to face up to it so we can be there for our disabled relatives, friends, employees, colleagues and neighbours.

Learning to live with a physical or mental impediment is hard enough as it is.

unsplash-jules-fuchy-man-alone-dark-sky — Many disabled people find their friends ‘disappear’. Photo by Jules Furchy on Unsplash.

Chronic pain: an unrecognised taboo

On the whole, talking about the chronic pain I experience tends to be greeted with a resounding silence, and/or rapid change of the subject.

If you’d asked me ten years ago to name taboos in the UK, I’d have said things like ‘female masturbation’ and ‘being transgender’. Twenty years ago, I might have said ‘being homosexual’. Particularly in some circles, these things are still somewhat taboo, but much less than they were. Now I’d include chronic pain, but only because I live with it. If you don’t, you’re probably happily oblivious of the awkwardness around the topic.

The Cambridge UK dictionary defines ‘a taboo’ as ‘an action or word that is avoided for religious or social reasons’. Having suffered from chronic pain for several years now, I’ve only gradually become aware of how often I refrain from mentioning pain, and why. On the whole, talking about the chronic pain I experience tends to be greeted with a resounding silence, and/or rapid change of the subject. No doubt this is why I often avoid mentioning it, or mention it briefly and rapidly change the subject myself.

Why the awkwardness?

Are people awkward about chronic pain because they don’t know what to say, like when someone’s parent has died? Or is it because they think you shouldn’t mention it; you should be pretending everything is fine? Hard to know really. Here are my thoughts on possible reasons why people react strangely to talk of pain:

Chronic pain, like death, old age and hospitals, is something most people prefer to ignore until forced to confront it. Discussion of these topics causes a sense of unease that people want to avoid.
People want to ‘save’ those with chronic pain from talking about something that seems very personal, so strive to change the topic.
People are worried about either sounding pitying or heartless, so say nothing or change the subject.
Actually, people are only a little awkward but the chronic pain sufferer is expecting awkwardness and that magnifies it in his/her mind.

There’s always the worry that silence means something negative like ‘you need to man up’, especially after actually receiving some rude and inconsiderate comments along these lines in the past.

Then there are other reasons why people with chronic pain don’t talk about it:

Fear of sounding like you’re complaining and fishing for sympathy.
The complexity of the subject, which can only really be covered fully by a long conversation.
Fear of sounding ‘soft’.

This article sums up brilliantly the many reasons why revealing a chronic pain condition can make a person feel very vulnerable: it can feel like you are in a no-win situation. But the less you say (or are able to say, before the topic is changed!), the more likely people are to jump to the wrong conclusions. The more you can explain, the more people are likely to gain understanding.

Why we all need to help end this taboo

The trouble with any taboo is that it creates repression and shame. People feel abnormal and are unable to obtain the benefits of discussing something important to them, such as compassion, getting useful suggestions, and that feeling of carrying a lighter load. And the subject of the taboo remains poorly understood, shrouded by prejudices. Estimates of those living with chronic pain vary, but it is undoubtable that the percentage is high: about 7.9 million people in the UK experience moderately or severely limiting chronic pain (between 10.4% and 14.3%) [1]. How many people do you know with chronic pain? Does it match these statistics? If it doesn’t, then maybe you know some people who are living in the silence of this taboo.

back-pain-pixabay — If chronic pain were visible, perhaps life would be easier for those living with it…

We Brits are well-known for a ‘grin and bear it’ attitude and for euphemisms. We say things like ‘things have been better’, when really we mean ‘things are terrible’. Is this helpful when it comes to chronic pain? Well, there’s certainly a need for much ‘patient endurance’, as chronic illness writer Toni Bernhard puts it. And sometimes we do smile, in spite of the pain, and we must. But we shouldn’t feel pressurised to pretend everything is fine if we feel unhappy. We shouldn’t feel unable to set boundaries, to pace ourselves, and to use mobility aids or other aids which ease our burden. Most importantly, we should feel ok about sharing this struggle, this massive part of who we are.

And with 69% of those with the severest level of pain experiencing anxiety or depression [2], improving the social conditions faced by these people should be a high priority. Feeling that pain is taboo isn’t going to lift anyone’s mood – quite the opposite.

hailey-keen-unsplash-woman-on-floor-in-agony — 69% of those with the most severe pain experience anxiety and depression, which could be reduced if there were sympathetic listeners on hand!

How can we get there? If you live with chronic pain, try to start sharing when you can. And if you don’t live with chronic pain, be ready to listen, to show some sympathy, and to discuss this issue which has been pushed into the shadows for far too long.

I’ve started talking more about pain, talking about it whenever a good opportunity arises. I’ve started resisting the urge to not talk about it. And you know what? It feels good. It feels a bit revolutionary. It feels like being myself and like opening the door of understanding, even if merely by an inch.

References

[1] Prevalence of chronic pain in the UK: a systematic review and meta-analysis of population studies by A Fayaz, P Croft, R M Langford, L J Donaldson, G T Jones, http://bmjopen.bmj.com/content/6/6/e010364.full

[2] The Health and Social Care Information Centre, Sally Bridges, 2012 http://content.digital.nhs.uk/catalogue/PUB09300/HSE2011-Ch9-Chronic-Pain.pdf

We are living in an alcohol delusion

We are living under a delusion: the delusion that alcohol is our best friend. The delusion that we need it to have fun or forget our worries or chat people up on a night out …

I’m bracing myself right now. What I’m going to say won’t be popular, but I think I need to do it. By way of introduction, I’d like to say that I gave up drinking aged 25, as I had a severe reflux problem and even a few mouthfuls of an alcoholic drink made me nauseous. I haven’t drunk since, and I think that distance from alcohol, from drinking, has really opened my eyes a lot.

Firstly, a look at the country’s general attitude to alcohol:

it’s mostly harmless
it enhances most situations
it’s the solution to our problems
it’s a crucial part of most social events
those who don’t drink are weird and killjoys
tales of drunkenness are funny
it’s fine to be an alcoholic as long as you still wash and aren’t homeless

Alcohol can be tasty and relaxing, it can give Dutch courage and brighten up a boring evening. It can also, to some extent, drown sorrows. But at the same time, it can do a great deal of harm. It can contribute to unwanted pregnancies, STDs, broken relationships, health problems, accidents and domestic violence.

joey-thompson-unsplash-pregnant-woman-dark-room — Alcohol is a major cause of unwanted pregnancies (e.g. see here). Photograph by Joey Thompson on Unsplash.

I once lived in a house with a lot of drinkers, including one alcoholic and a couple of borderline alcoholics. As a non-drinker, I wasn’t fully accepted by some of them. One sometimes tried to convince me I’d have more fun if I drank, but to be honest living there made me pretty glad I didn’t drink. For a start, the alcoholic had lost friends and opportunities due to her drunken behaviour, and was on the way to losing her relationship. Her boyfriend sometimes slept in the living room when she was drunkenly aggressive. She was a complete mess when drunk: we all got drawn in to her drunken hysteria. She also got cancer, for the second time, which can only have been aggravated by the drinking.

Others in the house also got aggressive when drunk, having pointless arguments. One messed up the football journalism he did at weekends due to turning up late and hungover. There was general disturbance and antisocial behaviour. Alcohol could not have been less attractive.

man-at-bar-unsplash-hatim-belyamini — Sometimes having a drink is actually not that attractive! Photograph by Hatim Belyamini. Sourced from Unsplash.

Another effect of alcohol that is often overlooked is the increased risk of accidents. This was demonstrated to me in a striking way when one of my close friends lost his best friend when he fell on the tube tracks after a night out.

It’s a myth that you have to be an alcoholic to get alcohol-related health problems. As the NHS site puts it: ‘Most people who have alcohol-related health problems aren’t alcoholics. They’re simply people who have regularly drunk more than the recommended levels for some years… And it’s certainly not only people who get drunk or binge drink who are at risk. Most people who regularly drink more than the NHS recommends don’t see any harmful effects at first.’ The NHS recommends less than 2-3 units a day for a woman, and less than 3-4 for a man. More than 9 million people in England drink more than that [1].

Health problems linked to alcohol consumption are [2]:

cancer
brain damage
high blood pressure and heart failure
sudden death due to irregular heartbeat
depression and other mental health problems
sexual problems, including infertility
obesity
disrupted sleep
osteoporosis
kidney disease
increased risk of pneumonia
stomach ulcers

Now for some surprising alcohol-related stats. You ready?

In 2013/14, there were an estimated 1,059,210 hospital admissions related to alcohol consumption where an alcohol-related disease, injury or condition was the primary reason for hospital admission or a secondary diagnosis [3].

medic-563425_960_720 — Over **1 million** hospital admission s were linked to alcohol in 2013-14. Image sourced from Pixabay.

In England, in 2013 there were 6,592 alcohol-related deaths. This is a 1 per cent increase from 2012 (6,495) and a 10 per cent increase from 2003 (5,984) [4].

Alcohol abuse is the third highest cause of death in the U.S. [5].

Even if you are a moderate drinker, is alcohol really something you want to advertise, a trade you want to support? And do your comments about alcohol encourage alcoholism and reckless behaviour? Since becoming a non-drinker, I’ve been surprised at how many people have criticized the fact I don’t drink (even a barman I’d only just met!). Virtually no-one has praised it. We are living under a delusion: the delusion that alcohol is our best friend. The delusion that we need it to have fun or forget our worries or chat people up on a night out (trust me, I’ve managed all three of these without alcohol). We are buying into the delusion that it is both harmless and necessary in our lives.

We are encouraging alcoholism, glamorising it even. We aren’t helping those who suffer from it. I know this from the house-share I mentioned above: when the alcoholic young woman tried to quit, mainly on an ultimatum from her boyfriend, others in the house drunk in the house and encouraged her to join in.

Approximately 17 per cent of men and 8 per cent of women will be dependent on alcohol in their lifetime (http://www.niaaa.nih.gov/alcohol-health/overview-alcohol-consumption/alcohol-facts-and-statistics). We need to wake up to the realities of alcohol and stop making drinking feel obligatory at social events, a sign of being cool and fitting in. Interestingly, it could be today’s young people who are leading the way: fewer and fewer young adults (16-24 years old) drink alcohol, and of those who do, fewer engage in binge drinking (a decrease of 1/3 since 2005) [6].

unsplash-bottles-of-wine-felipe-benoit — Is it time to stop giving alcohol such a major part in our lives? Photograph by Felipe Benoit. Sourced from Unsplash.

Over 21% of adults don’t drink at all, so if you give up you won’t be alone [7]. And you’ll actually be more bohemian than when you drank [8]. You’ll be fitter, less likely to get a horrible illness and less likely to die in an accident. You’ll be helping those with an alcohol problem to feel comfortable not drinking at social events. You’ll be advertising the fact it’s ok not to drink alcohol. You’ll probably also be nicer to people, have safer sex and drop that embarrassing late-night texting.

As I mentioned, I gave up alcohol because it was more unpleasant than pleasant for me, due to the nausea. But in all honesty, save the first few months of sobriety and a few isolated occasions since, I’ve been glad I did. My drinking practices were already a bit dodgy and, given some of the hellish times I’ve had over recent years, I’m sure they’d have gotten worse.

Deep down, do you believe our drinking culture is a good thing?

Share your stories of alcohol-related problems, or your personal experiences with alcohol below. Go on, I dare you.