I was particularly drawn to this reader comment:
“Without wishing to take anything away from the courage of the participants for allowing the cameras to record their experiences I really felt the programme was otherwise disappointing as it seems again to go no further than provide another reductionist view of mental health focusing largely on symptoms and treatments providing viewers with a similar viewpoint to that of the Victorians visited the old asylums.
This seems especially true when compared with this week’s BBC 4 series, Disowned and Disabled, where, in the second episode, Breaking Free, the documentary charts the history of the disability movement (excluding mental health, sadly) through the experiences of the disabled people who shaped it. Whereas, Bedlam, seems to bare more similarity to the voyeuristic 1950s clips featured in Breaking Free.
This seems to highlight how successful the disability movement has been in advocating for social justice and the social model of disability, whereas, not surprisingly as levels of stigma and discrimination remain high, the media, in particular, still seems to view people with mental health diagnoses as deserving little more attention than to occasionally feature in a documentary like this where people’s voices are heard but their experiences are framed very much within the context of psychiatry. For example, I would very much like to have heard James’, Helen’s and Aaron’s stories about what they believed had led to their distress, what they felt about the treatments offered and about the hospital generally, what support they had received previously, what they felt might have helped better, what and who had most helped them and to hear how they are now that they have left, what barriers they have faced, what they feel about others’ attitudes, what their hopes are for the future and what support they feel could help and what needs to change in order for people with mental health diagnoses to have an equal place within society.
In short, people with mental health conditions have a great deal to say but are rarely given an opportunity to do so which isn’t determined and edited by those who impose what they believe are their own superior agendas.
People with mental health diagnoses are facing huge challenges right now, in relation to changes to welfare, cuts to services and an ideology which paints many as ‘strivers or scroungers’, the ‘deserving or undeserving disabled people’, or, in our particular case, potential murderers and many feel is leading to people being more oppressed and more stigmatised than ever before. Our voices need to be heard and programmes like this do little to help, but then, maybe we should just be grateful and if some myths might be dispelled that’s the best we can hope for?”
Blog: “I am one of the people featured in Bedlam, a four part documentary series on Channel 4″ #MentalHealth #ukmh
Kay is an intelligent woman who had a professional job before she became ill. She is also a very caring person. During our stay one of the other patients (call her Sophie) suffered a very upsetting incident. She locked herself in her room & wasn’t responding to people trying to comfort her. We were worried that she might harm herself, so Kay & I went to check on her. (Sophie was in a different building to us, on her own at the time). When we went over, late in the evening, we found she had emerged from her room. Seeing she was alright, I was about to go, but Kay asked “would you like us to stay for a bit & talk to you?” She stayed for 2½ hours.
Kay had been ill for 20 years. When she came to the ADRU she wouldn’t even wear trousers because she was so worried that the bottom of the trousers was so close to the ground that they would be contaminated. In her last weeks she was lying down to do exercises on Gym mats which were so dirty you could see footmarks outlined in dirt. She was sparking with life until she was told she wasn’t going to get her extension. She said what made it so bad was that she had begun to hope she would be cured, and that hope had been snatched away.
So far I have only seen the bits of the documentary about me. However, I have talked to the documentary makers Pete & Dave about Kay & why they couldn’t say something about it. The fact that she didn’t want to be filmed or identified was given as a reason. I wanted a short voiceover or written text at the end of the program, just a few sentences, to say what had happened.
I strongly support the work of the ADRU (Anxiety Disorders Residential Unit), and I believe the documentary makers are good journalists. It’s disturbing that even good journalists are making documentaries which fail to report such disturbing facts.
Other things which are not being reported are:
The ADRU have had to reduce their number of therapists by one because of budget cuts. The head of occupational therapy took on some patients to compensate, but this has affected the quality of OT.
ADRU patients are now to be denied access to help from the Welfare department because of budget cuts. Both I, and Kay, had essential help from Welfare to sort out problems which had been festering for years.
Care in the community means little or no care for most mentally ill people, and things are set to get even worse.
At least four of the 12 patients at the ADRU had been left for years with no working central heating, living in squalid conditions. This includes Kay and me. Kay had a broken, east facing window in her bedroom. Two of us had been unable to feed ourselves properly. Kay and I had had vermin running around our homes (a rat in my case, mice in her case). I had scarcely been able to open a single letter in seven years. I had received no help with this until things passed the crisis point (I was heavily in debt as my benefit had been cut off because I was not responding to letters to calling for me to be re-assessed or to re-apply for benefits). Kay pointed out that even a murdering paedophile wouldn’t be left in the conditions we had been living in. If they were, there would be an international outcry by Human Rights organisations.
At the Channel 4 launch of the series on Monday the Series Editor Dave said that none of the Care Coordinators he had spoken to had raised shortage of resources as an issue. My own current care coordinator said the idea that there wasn’t a shortage of resources was “absolute rubbish”. Neither she nor any of her colleagues, nor my therapist at the ADRU felt they could allow their views on the matter to be known by any journalist, because it would mean the end of their careers. So, although the researcher Pete Beard told me yesterday that they had talked to Care Coordinators in a dozen different CMHTs, they probably weren’t hearing what those people really thought.
My Care Coordinator told me yesterday that CMHTs were being transformed into Recovery teams, the idea being that people who had no prospect of further improvement would be discharged & given no further help, even if they are seriously ill & likely to deteriorate drastically without continuing support. This is repeating the disastrous move by the last Labour government, which gave CMHTs a quota of people to be discharged every year. They too felt that people who were not improving should be discharged to make way for new people to be treated. In addition, Labour told mental health services that they should stop giving people so much help, & encourage them to do more for themselves. Whatever was intended, the result was that lots of seriously ill people had all help & support cut off. My mental & physical health was permanently damaged as a result. Before they introduced this stupid policy, I was far more functional, for instance I was able to drive my car & use my own PC at home. Because I was unable to care for my physical health I also suffered skin damage, nerve damage, kidney damage & lost several teeth.
None of this stuff is being reported by ANYBODY.
@TimetoChange new #MentalHealth advertising campaign calls for people from African or Caribbean communities. #ukmh #whatstigma ?
“Could you be a part of the next Time to Change advertising campaign?
Do you remember our message from a couple of weeks ago about Time to Change advertising?
We are looking for people to feature in a TV advert that will be broadcast in January 2014. We are particularly looking for people to come forward from African or Caribbean communities.
Real stories are at the heart of this advert. It will feature pairs of people – one person with experience of mental health problems and someone who has been there for them when times got tough. The message of the ad is that when you’re unwell, it’s the little things that those around you do, like sending a text or calling round to see if you’re ok – that can make all the difference.
So we want to find those real-life people who have been supported by someone in their lives. It could be by a colleague, a partner or a friend – and they may not even realise how much they’ve helped you. You may not feel like your story is extraordinary, but it’s those everyday things that we’re looking for. Both you and your supporter would appear in the ad, and you’d also make an online film about your story that will go on the Time to Change website.
If you’re interested, please email firstname.lastname@example.org and tell us a bit about who you are, who you’d like to appear in the ad with, and let us know if you have any questions. You’d need to be available to take part in a day of filming during November 2013. We’re looking for eight people, so we can’t promise that everyone who puts themselves forward will be in the ad, but there will also be plenty of other ways you can take part in the campaign.
Asda’s spine-chilling unawareness of how people who have encountered mental ill-health would react upon seeing themselves portrayed in a freaky Halloween costume with the phrase “Everyone will be running away from you…”, is hardly that surprising, surely? Is anyone honestly ‘that’ surprised that this visual representation of the mentally ill is alive and kicking, despite years of anti-stigma campaigning by those affected, carers and the Time To Change campaigns?
I caught up on this ‘saga’ this morning, I’ve been ill, not ‘mentally’, just a regular tummy bug, like the viruses everyone gets, and everyone recovers from…… a bit like depression, or anxiety or bi-polar, we get ill, and then we recover and life goes on, EXCEPT no-one ever made a ‘Tummy Bug’ costume which when you think of it, a diarrhoea and vomiting virus is something ‘most’ people would actually want to run away from, because it’s horrible, it makes you very ill and it is actually contagious!
Going back to my question, was I surprised? No! Disheartened, outraged..yeah, but never surprised. A few years ago my son, then in his early teens, bought a Psycho costume for Halloween. He isn’t a cruel person, nor was he setting out to harm the mentally ill, he lived with me, he knew all there was to know about my illness and was, (is), a kind, empathic and decent young man. When he purchased the outfit he saw no connection between his experience of people with mental illness and the costume which portrays a hollywood made image of .. well I’m not sure.. a murderer; a monster; an made-up thing. It wasn’t real to him. It bore no relation to real life.
‘Psycho’ was a word which had been used against me, but I associated the word not with that Hollywood image, yet of a time where adults in my own neighbourhood would use it as a reason to exclude and discriminate against me. They never suggested that once that everyone would “be running away” from me, but they did imply that because I was this ‘psycho’ I was someone who could not function in normal society, couldn’t volunteer at local events, or be given responsibility.
Did I let my 13 son wear the costume? Yes, I did, but I also asked him what he assumed a ‘psycho’ was. He said he didn’t really know, a scary character from a movie who killed people. He didn’t say ‘crazy’ or ‘mad’. The language of stigma and hate didn’t fit the suit he was going to wear to go out trick or treating, it belonged in a more adult world of prejudice and fear.
I’m not defending Asda, or the makers of the costume, or the people who would unthinkingly purchase it. I think what I am trying to highlight is that not as many people as we would imagine actually associate people with mental ill-health with the images from TV or Movies. Prior to discovering that I was someone who has a mental illness, bi-polar disorder, did I genuinely think that the Freddy Kruger’s outfits represented real people with mental illness? Of course not, I thought they were the monsters of horror stories, Stephen King and of Hollywood. Mental Illness was just something I associated with people in pyjamas who were sad and lonely a lot of the time, and didn’t go out much, and talked to themselves – hey, hardly movie making material.
Yes there is still there is so much work to do to highlight how harmful stigma is, and how language, imagery and words all work to exclude and marginalise people with mental illnesses, however unintentionally. We can, however, all play a part in that, we can’t stop Hollywood producing movies with monsters, but we can show our real image to the world…and today I’m wearing my pyjamas – My Tummy Bug costume!
*Special Guest Blogger*: ‘Mental health: Who is speaking for whom?’ from Mark Brown, Editor, Style Guru and All Round Decent Geordie Chap. #mhuk #ukmh
A big thanks to Mark Brown, editor of One In Four Magazine, for this powerful, thoughtful post on being ‘inclusive’ when representing mental health, the people affected by it and those inspired to make change. You can follow Mark on twitter @MarkOneinFour.
‘Mental health: Who is speaking for whom?
We’re at a funny old time in mental health. To quote Charles Dickens ‘it was the best of times, it was the worst of times’. We’re living through a period where every bit of news that’s positive for people with mental health difficulties seems to come balanced by a bit of bad news either about mental health services specifically or about the state of our country, economy or government.
Through the growth of blogs, social media, campaigns like Time to Change and even publications like One in Four we’re seeing a greater visibility for people with mental health difficulties and our ideas and experiences.
Once, before we all started blogging, tweeting, facebooking and organising the main voices about mental health were the voices of either medical professionals, well meaning (or otherwise) politicians and major charities. They were mostly voices that claimed to speak on our behalf. Now the internet and access to the platforms it creates for sharing, discussing, organising and making things happen has challenged that in fundamental ways.
Where once we might have been happy to contribute to a service user involvement opportunity or to take part in a consultation, more and more of us are making a space where our voices, opinions and, as importantly, our actions can be seen and heard.
Where once there were a few voices lucky enough to make it on telly or into the paper, now there are thousands in the public sphere across social media, all reporting from the frontline of life with a mental health difficulty.
That’s obviously a wonderful thing and a step forward. It does, however, present us with some challenges, too.
FORGETTING EVERYONE IS ALLOWED A VOICE
As individual voices speaking from our own experiences become more numerous, so too do the range of experiences and ideas that are available for debate and comment. We’ve been so used to other people speaking for us that we sometimes forget that someone writing a blog, adding a comment or chatting on twitter or writing for a magazine isn’t a person speaking from a position of authority but actually just another person with mental health difficulties sharing their views or experience. So we go in all guns blazing and start attacking people who are more similar to us than they are different.
It’s sometimes tempting where someone’s experience or opinion differs strongly from our own to accuse them of ignoring our opinion or, even worse, of not telling the truth. We, in effect, forget that we’re conducting with other people with mental health difficulties. They think they are advancing opinion based on their own experiences, we accuse them of trying to speak for other people.
The more different voices about mental health there are in the public sphere, the more plain it becomes that while there are many things that people with mental health difficulties experience that are similar, there are as many ways that someone’s experience may differ. People who experience schizophrenia have different experiences to people with depression. Older people have different experiences from younger people. What happens in Devon isn’t neccessarily what happens in Dorset, or Glasgow, or New Orleans. Beyond those differences who you are influences how mental health difficulty impacts on your world. Your economic circumstances, your religious or family background, your political beliefs; all these things will shape how you experience mental health difficulty and how you feel about it.
We have to make sure that we’re always open to discussing this whole mental health thing with people who don’t have the same experience we do. We’ll never find out what all of us agree on if we just focus on where we disagree.
A political movement is one where lots of different experiences choose to focus on trying to get somethings to happen to happen. They don’t all have to have had exactly the same experiences or even have all the same ideas. They move forward on what they all agree upon.
If the things that are focused on aren’t the same things they are passionate about, especially if those things are not issues that have a widespread footprint in debates people make the mistake of seeing this as actively and on purpose excluding their voices.
I think it’s legitimate to level criticisms at large organisations that speak on behalf of people with mental health difficulties and also claim to be inclusive, in general, of all people with mental health difficulties. I find it a bit more problematic when we’re talking about smaller groups and individuals. I always think of it like this: It’s entirely appropriate to lobby Parliament to pay attention to issues as Parliament, in theory, represents the will of the people. It’s not so OK to turn up at a local knitting group and declare that because they don’t also do kite making they are actively excluding kite makers from public life.
What’s lost there is respect for people making different choices and in it’s place is the idea that people doing different to you and coming to different solutions is somehow those people trying to rub out the ideas and experiences of someone who feels differently. In other words, a different experience or opinion is taken as an attempt to delete or negate your opinion – ‘If you are different from me, you are trying to erase me’.
As campaigners, bloggers and activists we have to make sure that we are enabling a wider debate to take place while also making sure that we can find ways of moving forward. We have to respect different opinions and experiences and find common ground whilst also remembering that no one can ever produce something that will make happen everything that every individual thinks should happen.
WHO ARE YOU SPEAKING FOR?
If you are claiming to speak on behalf of a larger group of people with mental health difficulties, the best way of making sure that what you say about mental health represents them and their ideas is to actually talk to them.
People in the past have asked me what right One in Four has to speak for people with mental health difficulties. I always say that it doesn’t. One in Four is a magazine written by people with mental health difficulties that speaks to people with mental health difficulties. To do that we try and put together a magazine that has interesting and useful stuff. Sometimes that’s things we think you should know. Sometimes it’s things we think you’ll enjoy. Sometimes it’s things we think will challenge. We’re not trying to sum up every single experience and idea of mental health difficulty in one place. We’re something you might want to buy and read, not something that is trying to represent you.
It’s the same for the majority of bloggers, tweeters, campaigners and activists. They’re all trying to do something helpful, useful, enjoyable, challenging or provocative. They’re all entitled to their own view of what mental health means and what we can do about it.
Even if we don’t agree with them, it’s always better to extend charity and respect, otherwise we’ll use up all of our piss and vinegar fighting with each other and we’ll have nothing left over with which to change the world.
Sadly, no one can be all things to all people. No movement can please all of its members all of the time. No group can represent all experiences and situations equally and get things done.
When it comes to an area as diverse as mental health what we need is more acceptance of different views and opinions, not less. We can listen to each other without necessarily agreeing. We can talk about different points of view without betraying our own. We can promote people taking different approaches even if they aren’t the approaches we could take. We can create a climate where big ideas are debated and minority voices are heard rather than just being ‘included’ by tokenism.
I’d rather have ten black mental health bloggers than ten people who aren’t black adding “and black people have different experiences of services” at the end of every post they make about their own experiences of mental health services. The same goes for any other group that may be under-represented in mental health debate.
We should be doing everything that we can to create spaces for people to speak for themselves. And I think that’s what is already happening.
NO ONE CAN DO EVERYTHING AT ONCE
A third challenge that an increase in different and differing voices in mental health brings is one that we’ve always had with One in Four: No one can do everything all at once. Every one time you choose to publish a article about a particular issue, there are a thousand things that you could have published an article about instead.
People can feel very upset, rejected or angry if their particular issue isn’t included or referenced. I see this happening in mental health all the time where people who decide to focus on one particular issue are criticised for not covering an issue that other people think is more important.
None of us can do everything or focus on everything all at once.
All of us are impatient to get things sorted out as quickly as possible. We all have to decide where to direct our time and effort. For someone to focus on an issue close to their heart is understandable. They aren’t the government, they aren’t a big charity, most of the time they aren’t even getting paid. In our enthusiasm and passion to make our point we can often end up savaging someone closer to us rather than learning from them, while we let the real subjects of our anger off the hook.
It’s always easiest to battle with other people with whom you share similar issues than to battle with the people in positions of power who could do something about those issues. Always.
As individuals few of us have the time or the resources to come up with something that will encapsulate the experiences of all people with mental health difficulties and change their situation. We have to avoid attacking other people for not having all of the answers or for focusing on one small particular part of the problem. Lots of little things can sometimes add up to a big thing.
If we’ve spent ages battling big organisations and huge discriminatory ideas, fighting for justice where none has been forthcoming, we can, often by accident, turn the same tools and weapons against someone who really has no more power or influence than us. We end up turning our peers into our enemies by assuming their different interests are an attempt to destroy us, rather than just a different focus. We make people that are more like us than not into ‘the enemy’.
All three of the challenges that a huge broadening of the space for people to talk, share and debate mental health have the same solutions: Promote discussion, value difference, work to find common ground and have respect, kindness and charity.
After all, how are we expecting to make the argument that society should be more accepting of us and our difference if we can’t even manage to accept each other?’
Mark Brown is the editor of One in Four magazine