Please don’t make our illnesses your costume this halloween.

Illness is not a costume

Did I need to say that? You’d think it would be pretty obvious that to dress up as a person with a serious illness many have to battle is pretty insensitive, outside the realm of what most would consider acceptable, no?

Apparently it’s not so obvious.

Thanks to stigma, something which is furthered by what some are considered to be light hearted novelty costumes, people with mental health problems are often portrayed as dangerous, scary, unpredictable, violent, prone to lashing out and even murderous. In previous years we’ve seen a vast array of them which are centred around the stereotypical ‘mental patient’ to ‘psycho killer’.
The reality is that people with mental health problems are far, far more likely to be the victims of violent crime than they are to commit it. They are more prone to abuse, isolation, harassment, assault, and murder.

Associating mental illness to violence is already helping shape the way that stigma towards people with mental illnesses manifests in our society. Turning it into a joke ‘mental patient’ costume is to bring to form the very real stigmas that we face and that make life harder for us.

A great example of how this view of violence permeates a culture is in the United States gun regulation debate. Every time there is a mass shooting, which sadly is many in the past few years, what’s the first thing people ask?

“What’s wrong with them? They’re obviously mental”

The NRA regularly describe the issue as being one of sickness as do many others in the pro-gun side of things. The general line is “‘crazy’ people shouldn’t be allowed guns, stop mentally ill people!”
The possibility of a register of people with mental illnesses in order to prevent future mass shootings has been thrown about on more than one occasion. At the same time you’ll find it used it as an opportunity to encourage people to get guns in case they come across a violent crazy person.

The association of seemingly random violence and mental health problems gets into a lot of people’s heads. When you’re hearing it from news stations around the world, in papers, on social media, it’s a hard association to break. It’s easier to accept that someone’s ‘out of their mind’ than just an average human being capable of harming people, but how many of those committing this violence have actually been found to be mentally ill? How many were motivated by something to do with a mental illness? Where are all the drives to encourage ongoing psychotherapy for mental illness to prevent it from happening, if it’s such a great problem? Where’s the extra funding towards it?

While the US example has far more obvious impact and has a far more sombre message, things like these costumes, novelty as they are, assist in compounding that oft heard message of ‘mental people hurt people’, every time it comes up in a TV show, in a book, it pushes it that little bit more. The stereotype is dragged out so much that a lot of people don’t even question it. A UK survey a while ago found that a third of people thought those with mental illnesses are more likely to be violent.. The more this message is broadcast and the more people who choose to listen to it, the more stigma people with mental illnesses have to deal with. The more people are scared of us, see us as crazy, see us as dangerous.

There are a lot of outfits and themes out there which don’t bring more misunderstanding and pain into the world, that don’t harm people who are already having to deal with some very heavy things. Please, use one of those. Don’t make our health your costume.

You wouldn’t talk about a person with cancer like that… Or would you?

“You wouldn’t talk about a person with cancer like that so why do you think it’s ok with mental illness?”

As both disabled and mentally ill may I suggest this bullshit dichotomy die in a pile of thermite? I keep seeing it in stupid memes since the Cambridges decided it’s now “ok to say” (to who? It’s not like funding is there for the services, if we even feel safe or supported seeking help).

People do talk to and about disabled and sick people negatively. This myth that it somehow becomes completely unspeakable when our health is weaponised against us is just that, a myth. We are told it’s our own fault, that we’re just not trying, not positive enough, that just need to drink kale smoothies and take a multivitamin.

People with cancer who smoke or smoked never hear the end of it, people with lifestyles judged morally dubious by some get their illness blamed on that, being too negative or cynical is seemingly a big cause of cancer, spinal cord injury, genetic disorders and all inbetween judging from what we get told, as if the body is manifesting that negativity into substance.
I’ve even heard that owning a set of tarot cards is why body doesn’t produce collagen correctly and my spinal fluid got lost one day.

Don’t try that fad diet your late aunt was on that involved only eating orange coloured food and banana milkshakes while sat under a waterfall with crabs in your hair? Then you obviously don’t want to get better. If you don’t try then it’s your own fault, isn’t it?
If your doctor’s told you this is it, for life, it doesn’t get any better and you don’t keep holding out for that miracle or breakthrough then well… Of course you’re not going to get better with that negativity. You shouldn’t be just trying to get on with your life as you are but rather remaining ever hopeful and looking for every new treatment.
You don’t exercise? Exercise cures so much though! It’s amazing what getting active can do. If you don’t do it then how can you know it doesn’t help? What do you mean you can’t physically do it without being in agony? It produces endorphins! Well fine, stay like that.

The in-joke you may see come up on my feeds about small breakfasts? It came from a friend being told their genetic condition, the same as I have, would get better if only they had a small breakfast every day. The suggestions being brought up almost always has a failure to comply to being implicitly blamed.

“So what’s wrong with you then?”
“Not enough small breakfasts, apparently”

As well as having physical disabilities I am mentally ill. It’s something I’m very open about and you can read about at length here, and though I’ve received more support, particularly in crisis, for my physical health problems than mental health ones, I’ve also received more expectation, judgement, blame, and bullshit for them too.

Our experiences with disability shouldn’t be erased and pitted against each other to make a point about common acceptability of stigma and shame. It should be considered unacceptable regardless.

A plea to car and van drivers everywhere: Please stop making our lives harder.

I am a wheelchair user. Navigating the pavements of the local towns in the rural West Country can be an absolute nightmare at the best of times. Drop kerbs lacking where needed, uneven pavements, overgrown hedges, and steep hills. Many places here haven’t caught up with the idea that some of us can’t get up steps which means our access can be limited to certain routes. Given how difficult this makes life in this area for people like me, as well as people in scooters, powerchairs, blind people with guide dogs, or people with pushchairs, I humbly request that you don’t make life harder still by parking on pavements and blocking drop kerbs.

Alternative routes to where you are parking your cars is not always available. Without drop kerbs either side of you, going in the road is rarely an option open to us. On busy roads attempting it can put us at risk. Even if you’re doing it for ‘just a minute’, we don’t know how long you’re going to be there or where you are in order to ask. We also don’t know whether asking you to move your car is going to lead to an aggressive confrontation, as has happened to many of us.

For the past few months in trying to get out of the road where I live to get to the nearby bus stop I’ve found my route blocked by exactly this. Cars completely blocking the main pedestrian exit from an estate which is largely made up of elderly and disabled people. To get around these cars I have to ring someone to help me take another route which I cannot manage by myself, either being pushed over muddy grass or adding 20 minutes to what would be a 3 minute journey, subsequently missing the bus.

One of the drivers in question. Upon requesting he move, he has kindly stopped doing this.

Please, please consider people like me more before you do this. The stress and upset it can cause is far more than many people know.

Mental health, poverty, and the devastating erosion of the social safety net.

Content note: This essay contains mentions of suicide.

There is a summary at the end of this post for anyone who struggles with the full text.

Today it’s come to light that Iain Duncan Smith, the Minister in charge of the Department of Work and Pensions (DWP), has decided not only to retest everyone on Employment and Support Allowance (ESA) and discount many of those with mental illnesses like depression and anxiety, they also plan to stop extreme psychological distress from being counted in Personal Independence Payments (PIP) assessments. (Source) (Source that ISN’T the Daily Mail)

This means people with psychological disorders that disrupt their lives to an enormous extent will not get the support they  may desperately need.

Rather typically of this Conservative government, they previously stated they would be cutting the qualifying distance in the PIP assessment in order to be able to afford the support for people with mental health conditions. This means a large amount of disabled people were kicked off the benefit for support that is now being withdrawn, apparently. It was a way to bring in more cuts and nothing more.

People are so scared about what their futures hold, and then going to be staring at the possibility of losing all support while still being incapable of working.

This is going to cost lives.

I have lost a lot of people in recent years, and I’m already seeing people discussing potential suicide if their reassessment comes up and it’s too much for them. I see a risk of a knock on effect which affects a wider group, those with both physical and mental health problems. I’m genuinely concerned that I may not make it through another application. Last time nearly killed me.

A long standing complaint of all of these changes is reassessment of people who have no hope of recovery. I personally have two conditions and neither are going to get any better. Over time my health will go downhill. I also have mental health problems which can be extreme at times. I need a lot of assistance throughout the day and will continue to, so what on earth is the point? Ah yes, just keep making changes and reduce the number on it regardless of the consequences.

I expect we’ll begin seeing a lot of appeals too. Appeals tend to cost the government an enormous amount. It’s worth remembering that at some points in this government’s term in power, enormous claims were made about 75% of people on ESA being fit to work, based on some dodgy statistics because Atos were just refusing everyone. A very large portion of that 75% actually had their decision overturned, at great expense of the state who had to pay Atos per person fit for work and the state for the cost of the appeals. Is it really worth the cost to both the state and the wellbeing of sick people? It’s costing a fortune.

At times it appears as though the only way you can get through an assessment and be treated with humanity is by pure luck. Some incredibly disabled people have been denied assistance in recent years and the government, far from attempting to ‘lift people out of a culture of blah dependency blah blah’ they’re placing them in poverty and risking homelessness.

A thing I find very disheartening, aside from the lives that will most certainly be lost as a result and impending poverty for so many, that we have so few helping to fight for us. We can’t easily organise, march, and petition. We get passing recognition but little besides that from so many activists. Just look at how long we’ve been fighting for a cumulative impact assessment, the WOW petition has taken a lot of people trying to bring attention to it for a very long time.

When we make noise, the most we can usually hope for is a Guardian article and lots of ‘if they’re so disabled, how are they marching?!’
We need people who are able to march with us, to petition with us, to get our voice heard and bring attention to the egregious behaviour of this government. Disability and mental health issues don’t make for sexy campaigns, there’s no way of making it palatable. Issues of disability are so ignored in this country, and most media attention we get is to criticise us.

The changes they’re making, I suspect a media line of mental illness being over diagnosed or a lot of implications that it’s a character flaw will emerge. Very much downplaying the severity of it, as well as making claim that those with mental illnesses are just getting more support after the £1bn ‘investment’ (it’s not new money, it’s just been moved) which is why the reduction. Alarm bells are ringing, loud and clear, and they sound fascist.

We’re all living in utter terror, always worried about that brown envelope coming through the door that could spell poverty/homelessness. People with mental health problems, rather than being able to focus on getting better in order to get back to work, are having to panic about impending judgement looming over them, threatening to throw their life into turmoil.

We already have to survive on so little. Financial stress can be devastating on it’s own. When you’re already having so many problems with health and living on a low income (as most on these benefits do), the idea of someone coming and taking your last lifeline away is terrifying. If they fail to take any evidence into account, as they often do, you can lose everything.

As I’ve stated above and will again: This will kill people.
The UN’s human rights investigation into our government cannot come soon enough. We signed up as a nation to the convention on the rights of persons with disabilities and we are currently doing everything we can to avoid any responsibility while withdrawing desperately needed support.

I pray they reconsider but sadly I don’t see it happening. Call me pessimistic but frankly I fear they see us as barely human, they won’t care.

Summary: Iain Duncan Smith plans to not only retest everyone on ESA (Employment and Support Allowance), but limit both ESA and PIP (Personal Independence Payment) when it comes to people who are debilitated by mental health problems. I am expecting stories to appear that denigrate the mentally ill, and I don’t expect there to be an enormous uproar with big protests, but rather a big news story for a day and then dies down to a simmer. It will go ahead, and people will die because of it, being unable to work and having no access to disability support.

No, I will not laugh at people lying drunk in the street.

There is a summary at the end of this post for anyone who struggles with the full text.

I appear to be one of few people this year who isn’t relishing in laughing at and mocking people who have got intoxicated to the point they’re collapsing in the street, with little thought to the circumstances that may have led to them getting into that situation in the first place.

There is one in particular that has popularised this trend of mocking circumstances people find themselves in. The photograph pictured, by Joel Goodman, been described as a ‘perfect’ scene; with ideal lighting, vivid colours, well framed and with an extraordinary look of one of Britain’s streets being policed on New Year’s Eve has been shared hundreds and thousands if not millions of times in the first few days of 2016. It’s a chaotic scene that shows a man lying on the ground in the street in the background. There is a man held down on the floor by two police officers at the forefront while a woman, dressed up for a night out leans over, seemingly trying to say something to him or them. A crowd stand around watching in the background.

What’s happening in this photo? The way it’s being shared is completely devoid of context but the assumption is that they’re knock-down drunk. That they gave overindulged, been drinking heavily on New Year’s Eve and have lost control of themselves to some degree. While the background has now been explained to some degree by the Manchester Evening News, it wasn’t known at the time it went viral. Most of those sharing and laughing at it will not be looking to find out the context and simply have no idea. At a glance, without that context, we don’t know if they’re drunk or if the two men have been fighting or one has attacked the other, we don’t know if the man lying down is injured and someone’s given him a pint while he waits for an ambulance (odd as this is, I’ve seen it happen more than once), if drugs are involved or if either of the men struggle with alcoholism.

Sharing photographs of people who have fallen down in the street is beyond crass, cruel, and I honestly would have expected a lot better from people I know. Particularly of feminists who take an interesectional approach to social issues. Many of us have been in that situation, some of us through no fault of our own having been drugged or plied with more alcohol than we intended on drinking. One of the most common forms of ‘spiking’ a drink is people buying doubles instead of singles or topping up drinks so that someone loses track of their alcohol consumption. The coersion of ‘just one more’ when inhibitions are already down.

Men who are a part of ‘lad’ culture regularly boast of getting women drunk so as to get them into bed. Having spent some time staying at a pub while homeless (the landlady was very kind and offered me a place to sleep for a while) I have witnessed men doing all they can do get women intoxicated. I have tried to intervene for some, informed women they’re being given doubles, triples, and informing them when their drinks are topped up behind their back. Do you know what these things lead to? Being drop-down drunk.

Don’t think for a moment that the images which can end up circulated of intoxicated revellers are all perfectly innoccent because ‘in all likeliness..’, I know somebody locally who was the subject of such a photograph, taken of her on a bus after having had her drink spiked (the police were involved although I’ve no idea if it was drugs or alcohol). I don’t believe the photograph went beyond local circles but to say that it affected her would be an understatement. Last time I spoke to her, admittedly a few years ago now, she was still finding that people recognised her as ‘that lass who passed out on the bus’. People still laugh at her for being in a situation of vulnerability that was forced upon her while she was trying to have a nice Saturday night out with friends.

And this is the point, it’s a situation of extreme vulnerability some people are going through. Even if that vulnerability is self inflicted it could well be that they don’t have all that much control over it due to alcoholism or peer pressure/coersion (which anyone aware of social issues knows can be a very, very powerful thing). Many are at a point where they are largely helpless, not in full control of their actions or understanding what is going on around them. In this case, whatever has happened to the two people involved in the photograph, they have woken up to find themselves the subject of unending ridicule. This is something they cannot outrun because of one night where they clearly made some bad decisions. Global shaming, particularly for the man who could potentially be injured for he’s been photoshopped into so many images for laughs that it’s becoming a meme in itself.

How would you feel if it was you, through whatever circumstance listed above? How would you feel if it was a friend of yours and you knew the context to be a bad one?

Much like the premise of my last essay on here regarding consumerism and considering context, when it comes to pictures of people lying in the street, these are things that anyone who considers themselves to hold an intersectional approach to social issues should stop and think of. Equally anyone in health who has experience with alcoholics, people who have been drugged on a night out, or those who have been plied with more alcohol than they knew of should, as a consultant I know put it, know better.

Show some kindness. If you don’t know how those in the photo feel about it, don’t share it. Misfortunes around substance use and abuse are not a laughing matter.

Summary: I don’t believe it’s right to take photographs of people in vulnerable situations without their consent, let alone when they’re not fully in control of their faculties. There could be a lot of reasons a person has ended up in that situation; alcoholism, spiked drinks, trauma. When you laugh and share these photos, you are potentially mocking (usually working class) people in tragic situations. Even those deliberately getting themselves into that state, you’re laughing at vulnerability of them while they’re unaware their misfortune is being ridiculed online. When going viral, a person may be unable to escape it. Give it some thought.

Edit: Anita Sharma on Twitter has sent me this link to a pdf by the All-Party Parliamentary University Group which I recommend reading if you’d like to explore this side of abuse within lad culture. Some of the issues mentioned in this post which centre around that culture and behaviours towards [mostly] women which are prevalent in social situations involving alcohol are looked at in more depth and offers a wider context of the issues involved.

Not so ethical: The exclusionary nature of ‘moral’ consumerism.

A. k. a. Why you can shove your ethical consumerism up your left nostril sideways.

There is a summary at the end of this post for anyone who struggles with the full text.

For a while now I’ve wanted to write on ethics in consumerism and in particular how those ethics are out of reach to those on lower incomes or in a number of different circumstances. How boycotts are not always practical and how, if you look at ethical consumerism with an intersectional approach you find financial or other forms of privilege are at the heart of it as a movement which is increasingly exclusionary the further down the lines of economic inequality you go.

I’ve tried to write on this before in an essay of a similar title, ‘Not So Ethical‘ but I never felt I really managed to get across the problems that I had with people who tout this and judge others for not doing so. There’s little understanding to the financial and practical barriers it can present to a good number of people.

For example an unemployed single mother is unlikely to be able to afford the inflated prices at her local stores. Butchers and greengrocers are incredibly expensive compared to the cheap meats available at the likes of Tesco and Sainsbury. In rural areas even places marketed as ‘local’ and good for the community, like the Co-op, inflate their prices knowing they have a stranglehold on the surrounding community as there’s no larger, cheaper stores nearby; People will be forced to pay. When the cost of local produce eclipses that of a cheaper shop that can be done 20 miles away, travel or home delivery included, it’s a no brainer which you go for if you’re stuck in a financial rut with little income and a lot of outgoings and responsibilities.

A person who struggles with their sight or literacy and it prevents them from being able to read ingredients printed on packaging is not likely to be aware that the product they’re buying contains palm oil, a product for which a large amount of animal habitat is destroyed leading to the mass deaths of certain species.
They may be disabled in a way which prevents them from being able to cook, leaving them reliant on ready meals and other pre-made foods. If you are disabled you are more likely to be in poverty which means those pre-made meals are less likely to be high in quality and therefore will almost certainly contain palm oil. Frozen ready meals in particular are renown for their palm oil content, but in those situations how many choices do you actually have?

At christmas, a disabled person scraping by wants to buy nice presents for their family but has been in overdraft for 4 months after unexpected bills threw them into financial chaos. Do they risk something from a nice local shop, or one with a good reputation, likely to have a price tag which goes along to match the moral way in which they practice business? Wander around countless shops and physically exhaust themselves trying to find gifts from different retailers that they might be able to afford? Or do they avoid the higher risk of potential financial meltdown if another bill comes in and hit up amazon for cheap but nice products where they won’t feel guilty or anxious about where it leaves them?

Someone working 3 jobs and trying to raise kids will likely not have time to research the manufacturing process of a company’s stock; where the cotton is produced, whether those workers are compensated and living in reasonable conditions or are being exploited. Where the cotton is turned into cloth, the same thing… Are the staff free to do as they please? Can they eat? Are they healthy? What of where they’re stitched together into the products we buy… How are they treated there, and how does it compare to the material suppliers given this part of manufacture is what often dictates the view of the company’s ethical standing? What I mean by that is, you can have a company abusing workers right the way up the chain until a point where people pay attention. Treat those right in areas where people are looking and ultimately you can hide a lot of sins. Is that person in 3 jobs going to put in the effort to dig past that level of every retailer they use?

Someone who struggles with food and nutrition may avoid a vegan or vegetarian diet because they do not have the time or capacity to learn to make changes to their diet or it’s not conducive to their health. If they’re unable to cook and beholden to what’s available in store, the pre-made foods generally being on the pricier side of things, they need to find the time to learn which might not be possible in their circumstances. They may have a learning disability that makes it an awful lot harder for them to learn, they could be illiterate and struggle with recipes so don’t know a starting point. They also may not have the money that it takes to learn to cook; buying ingredients they’re unfamiliar with and wasting valuable food as they learn their way around a kitchen and figure out what tastes they like, and all of the energy use that can entail.

People who can just about afford their food shop and have to search around on pricing is very unlikely to buy organic free range eggs and meat, or organic local vegetables, lamb reared in Wales. They’re looking for a meal they can afford; cheap meat, some vegetables, ready meals. Quick cheap food they can sustain themselves on without it leaving them in a tough spot with cost, health, and time; both cooking wise and education on nutrition for a potential change of diet.

Something galling of those touting their moral fortitude in their condemnation of the actions of others is an ever-present hypocrisy. Twitter is full of people acting holier than thou, telling others they’re ruining the planet and just need to make this change, or that. Mentioning certain companies can be seen as an invitation to be reminded of how awful they are (the implication heavily being ‘you should be boycotting them, what are you doing?).

It’s all well and good being critical of companies if that’s your thing, but you should at least have firm standing from which to preach if you consider yourself high enough morally to lecture individuals on their consumer choices, and you better damn sure know the angle you’re approaching it from given the economic barriers placed in people’s way. For example, are you using Apple products? Do you own an iphone or ipad? Apple have been consistently criticised for the pollution the manufacture of their products causes as well as working conditions in their production facilities and health of their staff.

It’s not just them, either. Other smartphone, tablet, telly, laptop, and PC manufacturers have had similar condemnations. There is no ethical option in that regard, tech is not an ethical business and in using technology you contribute to the harm it’s doing to the planet, to communities, contributing to the exploitation of labour (including of children), ill health of workers in certain manufacturing areas, as well as supporting the poisoning of water sources and land from waste.
A lot of technology is mass produced in planet-unfriendly circumstances by people who are being exploited, and if they’re not being exploited just go further down the line. Look at the conditions workers are living and working in around the mines where the raw materials used in the production of tech are taken from.

If you use technology you are as compliant as anyone else. I’ve heard it said that technology is something that cannot be avoided as the internet is a daily part of life, and that’s true. But if you consider yourself as having a pass for a situation you are effectively forced into, how does that make you different from anyone else forced into a consumer choice against their ethics?
I am not ethical, I am likely to never be ethical, not for lack of want but circumstance. Judging people for not following the kind of ethical decisions they’re expected to make as consumers is not feminist, it’s not kind on disability, on poverty, on people’s capacity and opportunity to learn things, people’s struggle for time, on all manner of things.

The hypocritical call for ethics can be very harsh indeed when so many people feel guilt over the decisions they make as consumers based on the circumstances they’re in. I know many who want to boycott companies, buy better food, buy local, shop around. They can’t.

So eat your organic, local, vegan food, buy your fairtrade t-shirts, drink your independent teas and boycott amazon and Tesco, but don’t condemn others for not doing so. Unless you know a person’s situation intimately and how it relates to any of the choices you make, you’ve no idea what their reasoning is and how much choice they truly have

Intersectionality is a tool for understanding these things, to see how different personal circumstances apply on different subjects and social issues.
Use it.

Summary: While I believe it’s commendable to base your consumer choices on your personal morality, you cannot expect the same of everyone and it is deeply unfair to do so. It takes time to research and learn, as well as the faculties to do so which some with disabilities or literacy issues lack. It can also be very expensive given that ‘ethical’ products are often priced higher than others, which makes it difficult for someone on a low income such as benefits to afford. It’s also very difficult to know which companies are ethical and which are not, given that large companies often hide their practices from consumers. I ask that you consider the potential circumstances of others instead of judging them based on your world view.

Edit: I’ve thrown in a little bit more information about the ways that a vegan or vegetarian diet can be difficult for some and given some examples. I was told I was being dishonest, making going vegan sound harder than it is, and they weren’t able to see how complex that can be, as a result I’ve expanded on it a bit. I have also changed the title to be less confrontational, though frankly the point stands. It’s unfair to push this onto people.

I am not here to inspire you.

There is a summary at the end of this post for anyone who struggles with the full text.

In the past few days, as a result of publishing a long piece on my physical and mental health, I’ve had a few offers to write for a few different places. Start-up magazines, blogs, nothing major. Most of them have phrased their offers around the idea that I’m an inspiration, how I’m managing with my health and being so open about it, going about my daily life with that as a factor, and somehow that will inspire people. Inspire them to do what, you ask? How does my terrible physical state in anyway inspire you to do something?

Oh yes, it doesn’t, because it’s not really about being ‘inspired’ at all, is it? It’s about sharing a story of adversity and triumph, about people looking at my life, laid bare in  print, and going “wow, at least my life isn’t that hard”. It’s about managing to adapt to daily life and do normal everyday things that normal people do. It’s a message of “wow, if they can get on with things then what’s my excuse?” or at times even just a chance to read a sad or feel-good story of how a person has overcome their disability and learned o cope. Hooray! Happy endings!

They want a sanitised version of how life is, a vague notion of illness which doesn’t really have much of a description. They don’t want the symptoms; the incontinence pads and catheters, they don’t want staying in bed because everything feels so horrible and wrong, or being unable to get dressed without help, fall and injuries. They want a vague idea of some nightmarish scenario that somehow you consolidate with your life and you come out stronger. They want bravery from you, a sense of not giving up no matter how hard it gets.

While for some that can happen, it’s certainly not true for a lot of people with disabilities, illnesses, chronic pain, mental health problems and so on. My life is an ongoing battle with symptoms that pop up, criss cross, affect one another, and it becomes a huge mess of not-coping. I’m not getting a happy ending and I’m not triumphing over my life’s pitfalls, I’m living through them, I’m learning to adapt to them because I have no choice. There are some things where I haven’t learned to adapt at all and have no intention of doing so because I know the difficulties that will be involved. I’ve lost my entire future to disability and no attempt at getting it back will work. Am I less brave for not trying now? Less inspiring?

Asking a person kindly and respectfully to write a piece talking about how life is for them and how it will all play out in future is one thing, but a lot of these offers don’t come in that way. They’re abrupt and to the point. “We want your story, you could inspire a lot of people.” They pay little mind to the fact that the story in question is a life. They’re asking to take a piece of you, lay it bare online for all to gawp at. Your words, your life, you struggles, so that people can read and marvel at your world, be amazed at how you manage to do all these everyday things like a normal person does.  It’s disgustingly exploitative. It’s unbelievable how many people offering these writing opportunities will outright refuse to pay for your time and effort. There’s the idea that the offer of a platform, however big or small, is compensation enough. “It gets it exposure, so many will read it!”, “you get to spread awareness” It’s as though they’re doing you a solid by putting it up, rather than you doing them one by giving your Labour and a part of your life to them.

the-only-disability-in-life-is-a-bad-attitude-1It goes down the same kind of line as ‘the only disability in life is a bad attitude’. You become a shining example of the Good Disabled  who gets on with daily life and wo
w, even though it’s all so shit and depressing and clearly very awful you can still smile and laugh! Who knew?! The default consideration of disability is that the person who lives with it must be in abject misery, there’s no nuance in the overall message, that you can have a big and complex life with ups and downs, just like everyone else, or even of the vast differences in the wide spectrum of disability. All that’s really wanted is, once again, ‘at least I don’t have to live like that, I can’t complain”

This gets particularly insulting of late given things what disabled people are facing in the UK. The lives found so inspiring, the lives that readers use as a yardstick to measure how good they should feel about their own lives, are being turned upside down and inside out by austerity. We’ve been facing cuts across the board, from our housing, our Motability cars, we’ve seen cuts to our benefits, increasing use of food banks, energy poverty meaning you’re having to keep the heating off at the detriment of health,  and more and more sanctions. There’s the bedroom tax, the struggling mental health services so badly underfunded that even if you need help dealing with it all, you could find yourself refused or waiting a long time. Of the demographics that are most impacted by the cuts to social security, health, and social care, disabled people find themselves ranking top, taking the brunt of the hardship.

I’ve seen immense hardship among my circle of elective family and friends. I’ve seen a lot of pain, terror, and panic attacks at rumours of more and more cuts being announced or leaked. The dread of the brown envelope coming through the door and the understanding that you probably won’t get the help you need. Even if you’re too ill to leave the house, you’re expected to move into work anyway, leaving you with nothing and no hope of gainful employment. You have the constant despair of knowing that the inevitable brown envelope could ruin your life, spell homelessness, starvation, and poverty.

As well as completely papering over the hardships to keep this vague, homogeneous and inspirational idea of disability alive, it also ignores what can be considered huge triumphs. Getting out of bed is a mammoth task at times, it can deserve a round of applause. Taking a shower? Get out the party poppers! They’re things that you can be proud of, achievements people don’t expect or understand, but achievements nonetheless. They’re achievements no one wants to hear about. Reading someone going on about their daily life and struggling but overcoming each little challenge presented just isn’t inspiring enough. Making a meal or going shopping just doesn’t give the same sense of personal gratification as someone who, say, has a job, children, or gets an education in spite of it all (I use ‘in spite’ here as it’s precisely how it’s put forward, a triumph over disability rather than it being a part of you).

If you ever feel like offering someone a platform to speak about something person on your website, or an ‘opportunity’ to write an essay for you, seriously consider what it is you’re saying to not only that person, but to those who read it. I’ve seen an astounding lack of consideration in this area for years and it’s infuriating, I’m not tolerating it anymore.

I’m not your inspiration.

Summary: Disabled people have a tough time of it because of stigma and the way we are portrayed in media. It’s regularly turned into ‘if they can do it, what’s your excuse?’. It turns disabled people into a motivational tool instead of being seen as people, it’s dehumanising us by taking away the nuance of our situations. It doesn’t actually inspire anyone to do anything though, it is just used as a way to make people without disabilities feel better about their lives; ‘hell yeah, I don’t have a disability’, in essence. We are also used as a resource for information and stories to make people feel their life isn’t so bad after all, and are often expected to provide this for free because of the awareness it raises around disability issues.

 

Please, don’t make our health your costume this Halloween

Illness is not a costume

Did I need to say that? You’d think it would be pretty obvious that to dress up as an illness many have to battle is pretty insensitive, outside the realm of what most would consider acceptable, no?

Apparently it’s not so obvious, as evidenced by a Greene King pub in Bournemouth who are soon to be hosting a Halloween theme night where people are encouraged to dress up as ‘deranged doctors, nurses, mental patients’. Edit: Greene King have stated apologise, saying it’s an unsanctioned initiative by the pub. They have cancelled the event on behalf of the venue and are sending staff on diversity training.

greeneking

Thanks to stigma, something which is furthered by what some are considered to be light hearted novelty costumes  people with mental health problems are often portrayed as dangerous, scary, unpredictable, violent, prone to lashing out and even murderous. In previous years we’ve seen a vast array of them which are centred around the stereotypical ‘mental patient’, from ‘escaped mental patient’ to ‘psycho killer’.
The reality is that people with mental health problems are far, far more likely to be the victims of violent crime than they are to commit it. They are more prone to abuse, isolation, murder.

Associating mental illness to negative things is already helping shape the way that stigma towards people with mental illnesses manifests in our societies. Turning it into a joke ‘mental patient’ costume is to make real, bring to form the very real stigmas that we face and that make life harder for us.

A great example of how this view of violence permeates a culture is in the United States gun regulation debate. Every time there is a mass shooting, which sadly is many in the past few years, what’s the first thing people ask?

“What’s wrong with them? They’re obviously mental”

The NRA describe the issue as being one of sickness as do many others in the pro-gun side of things. The general line is “crazy people shouldn’t be allowed guns, stop crazy people”.
A few years ago someone in the NRA, I believe, went so far as to suggest a national register of those with mental illnesses in order to prevent future mass shootings. Oh, and of course they also used it as an opportunity to encourage people to get guns in case they come across a violent crazy person.

The association of mass shootings and mental health problems gets into a lot of people’s heads. When you’re hearing it from news stations around the world, in papers, on social media, it’s a hard association to break. It’s easier to accept that someone’s ‘out of their mind’ than capable of shooting a lot of people, but how many of those shooters have actually been found to be mentally ill? How many were motivated by something to do with a mental illness? Where are all the drives to encourage psychotherapy and prevent it from happening? Where’s the extra funding towards it?

While the US example has far more impact and has a far more sombre message, things like these costumes, novelty as they are, assist in compounding that oft heard message of ‘mental people hurt people’, every time it comes up in a TV show, in a book, it pushes it that little bit more. The stereotype is dragged out so much that a lot of people don’t even question it. A UK survey a while ago found that a third of people thought those with mental illnesses are more likely to be violent.. The more this message is broadcast and the more people who choose to listen to it, the more stigma people with mental illnesses have to deal with. The more people are scared of us, see us as crazy, see us as dangerous.

There are a lot of outfits and themes out there which don’t bring more misunderstanding and pain into the world, that don’t harm people who are already having to deal with some very heavy things. Please, use one of those. Don’t make our health your costume.

Quantifying stigma: pitting the mental against the physical

Content note: Mentions ableism, mental and physical health stigma, gaslighting, fat shaming, eating disorders, death.

Raising awareness to the prevalence and difficulties of mental illness – how commonly it touches people’s lives and the stigma people face, the hardship and stress that stigma causes – is undoubtedly a good thing. When it comes to raising awareness of anything, we find it easier to quantify it’s severity by having a mark of comparison, and with mental health stigma the comparative gauge is usually ‘how we treat physical health.’

You wouldn’t treat someone with a physical illness the same way you do mental illness

This is one of the most popular messages you see doing the rounds when it comes to trying to raise awareness of stigma that’s frequently associated with mental health. We still see metal health as something shamed, words such as ‘crazy’ and ‘mental’ are still thrown around lightly to describe people who have very serious and very real difficulties, and when you’re in the grips of ill mental health those words, those negative messages, they can hit you hard. They can compound negative messages already going around your head and to say that is unhelpful is the Mother of all understatements.

We can see the hardship that the stigma causes, we can express it and we can explain how and why it’s harmful. We can raise awareness of individual illnesses and teach people what the different terms they flippantly throw around actually mean. What many often cannot see is that the above gauge so quickly leapt to for a measure of severity gives away our ignorance of stigma in illness and disability, as well as the parallels between the mental and the physical.

To sit and read social media, blogs, and columnists for various newspapers, people decrying the things mentally ill people are forced to face by a society that doesn’t understand, while steamrolling over the very real experiences you have lived, can be extremely alienating. If you have a physical health problem, chances are you have experienced almost exactly those same messages that you are being told you would never be subjected to.

“You just need some more fresh air, get out a bit more! You’ll be better in no time”
“You need to eat better, the key to good health is making sure you have a good diet.”
“You just need to exercise more. That increases your happiness too, it’ll help you get stronger”
“You need to remove stress from your life, try and relax more.”
“Do you drink enough water? You should try and drink 3 litres a day, there’s a lot that can be fixed just by doing that!”
“You should cut gluten out of your diet. Most health problems are actually rooted in the gut.”
“You should remove caffiene from your diet, you’ll never get better poisoning yourself with that.
“You need to think positively about it. Mind over matter is really powerful. You’ll never be better if you keep being so negative”
“You should try homeopathy.”
“It’s all those drugs you’re taking, they’re making you sick.”
“You need to eat small breakfasts every day”

The list of things people tell you will cure you – if you just try hard enough, invest enough time, put enough energy in, be more positive about, spend money on, ingest this thing, cut this out – is endless and you hear it all the time. People may not necessarily mean anything by it, they just want to help you somehow and giving advice is not only the easiest way, but sometimes the only way they can do it. Realising you have a health problem is like giving up control of a huge part of your life and it can be hard for those around you to accept that things are just as they are.

Whatever the reason for giving their input, what it feels like you’re being given this sugar-coated pressure, this nagging shame, it’s put to you as though it’s in the form of Good Advice but the message behind it is always the same thing. It’s you. By doing or not doing something, not doing enough, not trying, you are the root of all your ills. The underlying message is effectively blaming them for being sick.

One way you can see that underlying message compounded or remove any doubt as to it’s presence is when you explain to someone who has given you this Good Advice that it just won’t help. You won’t get better. Fresh air is not magic. You appreciate what they’re trying to do but exercise is not a miracle. They will sometimes give other, similar advice, or they’ll begin to tell you they’re just trying to help, how do you know if you haven’t tried it? Sometimes they may get increasingly defensive as if you’ve personally insulted them. You can told you’ll never get better if you have such a bad attitude about it, and that you’re not getting better is evidence of this over time.

If you have accepted the fact that you are ill and just want to get on with your life, your illness can still be a big part of that, and there being no happy ending is something a lot of people simply cannot get their head around, and your acceptance is deemed giving up. For a lot of illnesses, the expected outcome is not necessarily a good one and false hope is crushing, but in the face of the worst odds you are expected to fight until the end. You’re not supposed to get on with your life. “Maybe you’ll be the lucky one, there must be something, just do this..”

Sugar coated blame is just one form of all this. Did you know you can sometimes have doctors telling you it’s in your head? That you’re making it up? You can be told that what’s happening to you just isn’t possible, that you’re “crazy”, that you’re imagining it, that nothing is wrong at all. You’re told you’re making up all the pain, drug seeking, even that you’re too young to be in that much pain, or ill at all, unable to walk well.

“You don’t look sick” is one of the most consistent things a lot of people with invisible illnesses get told. It’s as if your failure to fit the very mobility-focused disability chic view society has of illness, pictures of people in wheelchairs or sitting with blankets over their legs, being helped to walkers, nullifies your lived experience entirely. You can experience everything from an expectation to hear exactly how you’re sick in order to prove you are not lying to an outright denial that you’re sick, that you’re clearly faking it, you look too healthy as if that has some homogeneous visual quality.

Sometimes you’re told directly that it’s your fault, whether it’s true or not. Smokers with lung cancer or COPD are consistently reminded of the link between their health and behaviour, fat people are told every health problem under the sun is down to their weight, and you can see the parallels that arise when you see people with eating disorders told that their issue is vanity, people with depression told they’re just weak in character. Even people who are dying are routinely having it suggested that they’ve done it to themselves in some way. It can come up with bizarre and tenuous links through ignorance; told you’re being tested by god, it’s karma, blaming a use of medication in childhood for any variety of health problems, blaming a lack of breastfeeding, blaming poor diet when young, poor upbringing, bad schooling meaning you’re just not coping with what they see as “normal” health. ‘Broken’ families’, lack of a Father figure, too much TV, too much time in front of a computer, not socialising enough.

There is so much stigma around physical health and a lot of it is ignored, misunderstood, or simply tossed aside as flippant commentary you should ignore. It’s emotionally taxing and stressful, and it’s something a lot of people have to learn to manage on top of their health issues thanks to it’s prevalence in our society. You can’t ignore something that won’t ever seem to go away, not least because people so often wish to know “what you’ve done to yourself” at any hint you’re presumed to have a health problem. Over time it can drag you down and put you on edge, you start saying you’re fine a lot because then maybe, just maybe, it won’t come up. You can feel small and helpless the more you are told “you just need to..”, and over time as you’re ground down you start to doubt whether you’re really sick, whether you’re really just lazy, whether you’re really just mentally ill.

All of this is not to ignore that there are also some enormous crossovers with physical and mental health stigma. An expectation you’re depressed or otherwise mentally ill because “how on Earth can anyone go through that and not be?” The aforementioned being called ‘crazy’, imagining things, it all being in your head. If you are already diagnosed with a mental illness, it’s possible that a lot of other, unrelated, health issues get associated with it. Your lack of energy is your depression, investigation over, problem solved. Your pain is worse because you’re clearly not coping mentally, try and remove stress and just relax more. And equally mental health is ignored at times, “well of course you’re going to be stressed with all this going on” when really there is a deeper core problem that needs addressing. Let’s not forget, either, that many people who have physical health problems may also have mental illnesses. You have to navigate the stigma of not just each of them individually, but them both together as well.

Mental and physical health undoubtedly have their own individual issues attached to them, their own stigmas, and when you stand at the intersection of them both you see new ones arise. We can quantify the difficulties of mental health stigma people are subjected to without invalidating the incredibly harmful stigma that looms over physical health. We can explain the harm it can cause to individuals and to wider society, how it stops people from seeking help or ostracises them when they do. We can explain different terms and different illnesses, show that flippantly throwing around terms is belittling experiences people actually have, lift people out of their ignorance and show them that mental illness is not necessarily what they think. We can raise awareness without standing on top of those who are just trying to get through the same.

We can do better than this.

Not so ethical: Buying power and why we can’t all shop by conscience.

“You’re exploiting those worse off by buying that!” is something I’ve heard a lot since last night, it’s also something I’ve heard a lot, as someone who cannot afford to purchase ethical goods.

I’d like to pick this apart a bit.

Last night I called David Cameron out on his tweet in which he shared the menu of his G8 dinner. A menu of food that is beyond the budget of many in this country, and yet is being paid for by people who are, well, not him. 
There are half a million people in this country who are using food banks. To upload and share that image of his menu was an affront to those who are struggling to put food on the table. It’s tactless and shows him as out of touch. All in this together? Not even close.

My tweet was: “Half a million people using foodbanks and you post that? Out of touch, misery inducing, incompetent box of wanker.”

In response I was asked if the products I purchase are ethically sourced. Be it the computer I am tweeting from, the clothes I wear, the food I eat. The answer is, simply, no.

By buying cheap food, I am creating demand for vegetables, canned goods and so on which are produced by workers exploited by their employers. They may be working incredibly long hours for low pay, treated badly by their own employers.

By buying cheap food, I am creating demand for meat which is likely to be sourced from farms which mistreat animals. Which keep them in poor conditions.

By buying cheap clothes, I am creating demand for clothing which is made from countries where workers rights are minimal, pay is low, and there’s large amounts of exploitation.

By buying and using digital devices, I am doing very much the same as with buying cheap clothes.

I am aware of this. And yes it does bother me. The question is then, why would I do that?

I’m disabled and unable to work. I need 24/7 care which is provided by my husband (saving the state a fortune in care). Because of this we have very little income.

Much of my food, to ensure I have enough nutrients to keep me as healthy as possible, are vegetables. Meat is a luxury and when bought, it’s often on reduced to clear or the cheapest that’s available. Most of what is bought is from value ranges as even the own brand non-value stuff is too expensive.

New clothes, again a luxury. Often I have clothes donated to me, I will buy them from charity shops in larger sizes, and I will alter them on a sewing machine or make new/different clothes from them. If I do purchase *new* clothing, I either have to save up a lot or buy cheap. While I would love to order from an ethical company, the prices are often inflated, beyond the reach of people in my situation.

As for technological devices, very few are ethically made. The computer is one of my few means of having contact with the outside world as I rarely leave the house. It also provides entertainment, as does the television, because I have few other choices of things to do. 
Should I buy ethical foods, leaving me malnourished? Ethical clothing, leaving me out of pocket? Should I buy books I can’t always concentrate long enough to read [and before you say ‘library’, note library closures and access]? Arts and crafts, despite not being able to hold a brush or a pencil most of the time? Should I give up my phone, computer, and television, my means of socialising, entertainment, and way of getting in contact with people?

There is a reason I am in a situation, why many, many people are in this situation, and it goes beyond just ‘oh I’m disabled I can’t afford it’. Why can’t we afford it? Those who are in work, why can’t *they* afford it?

There is no living wage, and minimum wage is not enough to allow ethical purchasing. Housing costs are extensive, travel costs are extensive, it gives you little choice in what you buy.
The costs associated with disability are extensive and the benefits received just about [and sometimes don’t] cover the basics providing you spend frugally. In addition they are also facing a real terms cut. 
Those on out-of-work benefits are expected to survive on between £56 and £74 a week; to cover energy, travel, food, clothing, toiletries, household goods and so on. How can anyone in that group afford to buy ethical goods?

Companies are not under any real pressure from the global community to produce ethical goods. There are human rights groups, campaigners and so on, but it’s nowhere near the global pressure that would be required to force a change. Governments are paying lip service to the public and doing little. 

Ultimately there are those in the above groups who can only afford these goods because of current practices. People outside of these groups will buy them because it leaves them some spare cash in hard times.

Now join the dots. Who is in charge of deciding the amount of benefits disabled people get? Who is in charge of minimum wage? Who is in charge of out-of-work benefits? Who is lobbied by large corporations? Who is creating the gap in the market?

I’m not suggesting a wide scale and massive shift in global, or even national practices, wages, benefits, and so on [although as any of you know me are aware, there are some shifts I would very much like to see]. In order to shift things wide enough to allow people to buy ethical or even reasonable priced goods, the shift would be so large it would cause problems in itself. 

Individuals in immensely difficult living situations are not in control of the global economy, they have little choice but to buy goods which are not ethically sourced or produced. They are working to survive and live the best they can in difficult times. And this of course doesn’t even include those who do have the income to purchase ethical goods, but choose higher priced unethical goods instead.

If you are on your high horse about purchasing choices of those who are not as well off, I suggest you get down and look into why those choices are being made.

Edit: I was asked about the ethics surrounding things such as fast food chains, clothing chains and some others. The questions I’ve received amount to: Should the ethically minded choose where they go on the basis of the practices of the company if they’re able? Or what if you could effectively force companies to adhere to ethical practices?

A very simplified hypothetical:
If the consumer in question has an interest in ethics, then yes, for their own personal reasons if it makes them feel better/their choices are impacting things.  If there were a widescale boycott and more pressure on a particular corporation to take part in ethical practices they would have little choice if they wanted to continue to get the customers coming in.

There is another side to the coin though. They have a commitment to their shareholders, to get the highest profits possible. In all likeliness they would force up the prices up to deal with the increased cost of sourcing/production. If that happened it would limit the customer base to those who can afford it requiring all new marketing campaigns targeting the new customer demographic.

Right now not only does that not make sense in a business model, given the recession, it has the potential of putting jobs at risk. If less people purchase from the company, less members of staff would be needed and branches would be likely to close. 

They would more likely continue to market to their existing demographic; increasing advertising campaigns, putting on offers, and if their profits drop, sacking staff.

Either way there’s the potential for staff lay-offs, which means more people who are unable to put back into the economy.


If it were more wide scale and ethical practices were forced on companies, higher incomes of consumers themselves would be needed. Products in stores would be vastly more expensive and unaffordable for many on current incomes, forcing people into poverty. Again this would leave people unable to put money back into the economy, which in turn would harm company profits as they’d have less customers.  

Governments and corporations around the globe would need to increase benefits and wages. [import/export comes in here, which is a whole other kettle of ethically sourced fish]

Chances are companies would still find loopholes which allowed them to exploit workers to a degree, in any number of ways; Stating they are manufactured ethically while sourcing parts and materials from third parties which still exploit workers is one, finding loopholes in employment law, moving large amount of their business to countries which are willing to be exploited for the jobs they and whatever meagre tax they would be willing to pay.

Video that’s heavily related to this subject which is worth a watch. Thanks to @SandiaElectrica for pointing me to it.