Okay, big topic, plenty of toes to step on. Let’s see how I go!

I personally do group Mental Illness in with other Disabilities. Speaking as someone who has a number of disabilities in various areas – psychiatric, chronic illness, learning, and at times mobility related (eg. I’ve spent a couple of years in a wheelchair) I’m in a good place to compare and contrast.

There are some really good arguments against treating Mental Illnesses as Disabilities. One of them is that disabilities tend to come with the perception of lasting a long time. Doing anything more that makes people feel they will not or can not recover from or live well despite Mental Illness is not a good thing. Another one I’ve heard is that people feel that the word disability is so negative, it immediately obscures everything they feel they’ve gained through their experience of Mental Illness.  People point to their creativity, self awareness, drive, passion, empathy, sensitivity, resilience and say ‘Is this a deficit? I think not!’ Those who reject the medical model aren’t happy about the label ‘mental illness’ being applied to their experiences, which is pretty understandable. They tend to be even less thrilled about being grouped in the disability box too!

My experience has been that most folks who find themselves in this ‘disability box’ feel much the same way. The first experiences of someone sectioned in a psychiatric hospital are often absolute horror at being trapped in with the crazy people. Suddenly faced with a ward full of people who are weeping or medicated to sleep or talking to themselves or wildly unpredictable, most people are mortified at the implication that these are their people. That as far as society is concerned, you are one of them. Folks disabled suddenly often struggle with the same massive identity shift, confident footballers left paraplegic following accidents are stunned to find themselves now thought of and spoken of as a disabled person. As with mental illness, often some of the greatest harm is done not by the actual condition or limitation or experience, but by the terrible stigma that accompanies it.

Those of us who have prided ourselves on our independence, strength, productivity, cheerfulness, generosity are bowled over by the shock and stress of having to see ourselves completely differently and struggling to maintain our sense of self and self-esteem when everything we used to rest it on gets taken away. Sometimes we are forced to confront ourselves as dependent, vulnerable, exhausted, irritable, and the recipient of care rather than the giver.

People with disabilities often express deep frustration that their limitations are constantly given more focus and attention with their capabilities. The entire disability sector is attempting to reduce stigma, redefine horrible labels, and draw attention to the incredible array of skills, gifts, interests and talents that people with disabilities have. Some of these – as in the case of superb hearing, are a direct result of the disability such as vision impairment. Many people with disabilities talk about what they are able to do, and how so much of what holds them back and restricts them has nothing to do with their condition and everything to do with stigma, discrimination, and lack of awareness.

Disability tends to evoke the idea of a life-long condition. For some people this is the case. For others, a disability of some form is temporary. They may heal, be cured, grow out of it, adapt to it, recover. This misconception about life long doesn’t fit a lot of people.

My experience has been that everything we hate about the disability label, is everything everyone else in the disability label hates.

For those who do not consider their experiences to be ‘Mental Illness’ and do not see them as a limitation of any kind, it’s entirely understandable that being asked to view them as a disability would be deeply unpalatable.

There are many definitions of disability, including social constructs that view the limitations as being socially created (through lack of access etc) rather than oriented within an individual. To bypass some very complex conversations for a moment and use a very primitive definition of disability – a limitation of some kind for which you need support, assistance or a different approach to be able to do something someone else your age could do – then it’s true that there are experiences currently called Mental Illness that do not fit this definition. Voice Hearers who live well with voices that cause them no harm or detriment are right to be uncomfortable with being classed as having a disability. We are not the only ones who feel this way, there are other people who have been traditionally grouped in the Disability sector who have fought to not be considered part of it anymore. Two big areas are those of the Deaf Community and some folks on the Autism Spectrum. I think we can learn a lot about our relationship to the Disability label by observing the dynamics of other groups and their stance.

A big portion of the Deaf Community have argued that Deafness is a cultural state and in no way a disability or limitation of any kind. With a history of appalling treatment by well-meaning hearing people who banned sign language in a fairly futile and certainly traumatic attempt to make deaf children communicate ‘normally’, there are now many deaf people who have so divorced themselves from the disability sector that when a woman recently spoke about curing the world of the scourge of deafness, this community was furious at what they perceived to be an attempt to annihilate their kind. They point out that within their own communities with things set up for them they are in no way limited or disabled. The separatism in some areas is so extreme that some hearing parents are afraid of the Deaf Community ‘getting hold of’ their children and entangling them in a social hierarchy that confers status on the basis of degree of deafness and deafness in your lineage. The Deaf Community is desperately underfunded, there is a chronic shortage of money to pay for translators to enable Deaf people to further their education, interact with their own doctors, and function in a hearing world that largely ignores them. The arguments about cultural pride can be so loud that a newly deaf person who is shocked and mourning a loss of a sense they valued has no voice.

Some in the Austism Community, Auties (those with some form of Autism), and Aspies (those with Asperger’s, ‘high functioning’ Autism), have also rejected the disability label and embraced Spectrum Pride with enthusiasm. Those who are ‘high functioning’ point out that they do not perceive any limitation or disability arising from their condition. They talk about how we have pathologised a normal variant of the human condition, and that efforts to help them are little more than attempts to coerce them to conform to social norms and values they have no interest in. There are a lot of parallels here. In some groups, separatism is becoming extreme, Auties and Aspies spending time and forming relationships exclusively with each other, talking in stereotyped and derogatory ways about ‘Neurotypicals’ (the rest of us) who lack creativity, innovation, strength and are examples of lesser kinds of humans. Autism is generally considered to be responsive to significant, quality early intervention, which is highly expensive. Autism support is also desperately underfunded.

There is a conflict here. People are trying to find frameworks that are respectful and dignified and acknowledge that for many people given a label, there are no limitations beyond that of stigma and small mindedness. That the world and people are incredibly diverse and there is richness in acknowledging that and joy in being proud of it instead of characterising it as a defect. This is so important!!

Those in the disability sector who have an illness of some kind rather that a condition that is stable and non-life threatening don’t tend to lean towards the ‘Pride’ movement in the same way. Rather than being offended by the prospect of cultural annihilation, they are tired of pain, weary of medical interventions, afraid of early death, struggling to survive. There is great pride in what people are able to do despite their illness, but the illness itself is often perceived as an enemy that takes much away. These people usually want to be cured, their conditions rob time, dignity, comfort, fertility, and life.

And then there is the need, the reality that at the other end of the spectrum, where the voices are abusive, where the autism is severe and terrifying, where the deafness leaves someone isolated, distressed, unable to complete schooling, there is great need. When we allow our most functioning representatives to shout about Pride, the cruel reality seems to be that our most vulnerable people go without funds and services. Funds and services are provided for people who need them. If there is nothing wrong with us, if we are just diverse, if we have no limitations and are not disabled, there is no need for funding or services.

I am very wary of freedoms that are purchased at the cost of someone else. It is not only the wider community that can be discriminating, negatively stereotype, dis-empower and harm. Sometimes those of us who have received the most appalling treatment are at the highest risk of reacting against it by building our own worlds on the same principles. 

I am wary of those of us who know the pain of stigma making decisions about how we see ourselves and our group on the basis of stigmatising misconceptions about other groups.

I think we make things better from within, together, rather than splitting off and saying ‘we are not like those other people’. I think we fight to reduce stigma, to create pride and joy and celebration of all diversity, not just our own. I think we who are least limited and have the most voice owe those who are most suffering. We overcome stigma and discrimination when we stop dividing people up into camps and defining ourselves as different from – better than, those people. We build a better world when we stand together and say – see these people with intellectual disabilities? These are my people. See these ‘mad’ people in the psychiatric ward? These are my people. People with autism, with MS, with delayed speech, with social phobia, with downs syndrome, with acquired brain injury, people who are isolated, friendless, suffering, people who are incredible, resilient, creative, these are my people. 

These are our people. 

We all deserve self-respect, and we all deserve support when we need it.

There’s an interesting idea becoming more prominent in the mental health and community services area. Here in multicultural Australia we’re starting to talk about making sure services are culturally appropriate. Some examples I’ve come across are allowing traditional healing ceremonies for a person from an Aboriginal or Torrens Strait Islander heritage who is suffering from severe mental illness. Another is being willing to use the terms and frameworks about mental illness that people from a different culture are more comfortable with.

There’s an interesting tension between the goals of wanting to educate, raise awareness , and reduce stigma about mental illness, and wanting to be sensitive to the beliefs and understandings of different cultures.

From my perspective one of the things that interests me is how narrowly we are currently defining this idea of culture. If a white European turns up in the psych ward convinced he is hearing the voice of God it is explained to him he is psychotic. But according to the expectations of cultural sensitivity, it’s not appropriate to say that to someone from a CALD (culturally and linguistically diverse) background.

From the perspective of someone who’s spent a lot of time rejecting the mainstream culture I was raised in and embracing the values and ethos of various subcultures instead (such as goth), I find it frustrating and offensive that being Caucasian means it is assumed I am of the same culture as the social workers who put together community programs.

Most of our mental health services operate from a set of values that in my opinion are very middle class. I see that as both as strength and a weakness. There are a number of middle class values that are pretty awesome, and there are a lot of people who find these values and this culture the most comfortable and reassuring. But on the other hand, there is a high need for appropriate support for people from marginalised subcultures, as that experience of being marginalised is one of the risk factors for developing a mental illness.

When everyone is dressed in suits and speaking clinical psych lingo, our hippies, punks, goths, stoners, metal heads, bikies, artists, sex workers, emos, nerds, surfies, queers, new agers, and skinheads may not feel comfortable looking for support, and may not be able to find the kind of support they actually want.

I think defining cultural sensitivity more broadly means encouraging diversity of many kinds in our mental health services. I like to see people from CALD backgrounds in services. I also like to see men and women, mainstream and alternative, younger and older. When our services get uptight about appearing ‘professional’, often under the mistaken idea that all people see this as a sign of respect, I am depressed. When we translate fact sheets and information into Italian but not into Plain English for laypeople I feel like we’ve missed the point. And when we go to a lot of effort to create environments in which our funders would feel comfortable but not our highest need people with mental illnesses I’m deeply frustrated.

The training around social and community work has a language that mostly leaves me cold. I drive through small towns with little community centres bravely trying to offer social cohesion and connection in a format that is perceived to be so profoundly uncool that only the most desperate or dis-empowered will seek help there. On the most basic level, having almost no services available after hours when we know that after hours are the peak need times, that many people with mental illnesses are most stressed and vulnerable at night when they can’t sleep and can’t talk to friends or family is such an obvious clash between the need and the structure of the services.

Another example is of a young person seeking to rebuild their life following an episode of mental illness, and encountering a major culture clash between their needs and the values of the support staff. They loved to DJ which involved late nights, but the staff were trying to help them get up early and have ‘normal’ sleep patterns. Whose recovery is this, anyway?

Mental illness and different from the norm are often confused with each other. It can be difficult at times to get people to see them as separate concepts. One of the things that concerned me back when I started this blog is that I am a fairly alternative person – my way of coping with a stressful talk at an interstate conference is to dye my hair green. I worried that my artistic nature would make me a poor spokesperson for all those people with mental illnesses who are trying to explain – ‘look we’re normal’! Then I thought about all the oddballs like me who also need spokespeople, particularly those who can say ‘I am not normal and I don’t want to be normal, but I do need support to function!’ ‘Normal’ and ‘healthy’ are different concepts. ‘Different’ and ‘mentally ill’ are also different concepts. Some of us crave a link back to wider society and need our ‘normalness’ recognised. Some of us want our uniqueness to be seen as separate from our challenges, because we want help with one but have no intention of being ‘cured’ of the other!

The most frightening experience for me as an alternative person with a mental illness, has been struggling with homelessness and poverty and feeling very keenly that it’s critical I find a way to be perceived as valuable in the eyes of the people who control the resources. I wore no strange clothes to Centrelink appointments, no unusual hair or makeup to see people about housing support. Alternative people do not often run funding bodies, they are corporations with business and professional people in them who are comfortable in a corporate world. These are the people who set the tone for the services, and they feed and house their own.

What bypasses this? Community based support. Things were incredibly rough last year for me, and where I was staying I had a lovely neighbour who regularly gave me food over the back fence. That did a hell of a lot more for me than a visit from a community nurse. Taking in mates between houses, helping people move, gardening bees, hosting catch-up’s, pet sitting, volunteering to help at an art class, these things change people’s lives. Kindness is the greatest gift to anyone in difficulty, and is most spectacularly demonstrated between people who are both struggling. Often the most generous behaviour is between those at the bottom who know hardship and the difference that a gesture of care can make. What you do in your life matters, you don’t need to be well, or working, or saving whales to make a difference. How you choose to treat people, the other stressed out people admitted in hospital with you, your difficult neighbour, the girl at the community centre who completely rubs you up the wrong way – these things count. They make a difference, and you know they do, because each of us has experiences where care mattered, or where kindness was absent and its absence was painful.

So, I like the idea of culturally sensitive services. I especially like it when it dovetails with the idea of client-centred services, where there is recognition that on some level, each family, each friendship group, each religion, each town also has its own culture. Services also have a culture of their own, language, values and traditions. Sometimes there is a good match between these cultures and sometimes there is a painful clash. Good services adapt to the people they are there to support, and they model diversity of cultures within themselves. The best outreach to any group is often from a member of that group, and that means we need to create a culture in our services that welcomes and embraces people from diverse backgrounds in a way that encompasses and goes beyond CALD.

See more like this:

• Is Mental Illness a Disability?
• The Disability Tango
• Boundaries and being human

How to communicate the experience of the Voice Hearer (VH) conference? I’m very aware of how privileged I am to have been there – abstracts accepted and fees waived by the conference organisers, transport costs to be refunded and support from my Supervisor at Mifsa, free meals and accommodation offered by a friend in Melbourne… without that wonderful constellation of generosity I could not have attended. I still owe money for the vet and the dentist and will need further services of both over the next month.

I so wish I could have taken with me all the people in our VH hearer group Sound Minds – to say to them, we are not a minority, we are not just a wonderful little group, we are part of a whole movement! All around the world people like us meet up and build groups and write training and talk about the future and how to make it better. One of the speakers said that now we have realised that many people hear voices, who do not have a mental illness and are not distressed by them – we need to try and learn from them to help the people who experience abusive voices and are suffering because of them.

I’ve been through so many emotions in the last few days. It’s been incredible, overwhelming, distressing, exhilarating, peaceful, beautiful, painful, moving.

This was the first conference I have spoken at that was a consumer-run event and the atmosphere was distinctly different to the more corporate forums run by and primarily for mental health professionals. In some ways it was easier to speak and share my own personal story in this context. That sense of being a bug under a microscope with the dissecting tools hovering closer was less pronounced.

Eleanor Longden gave a long, powerful talk about her experiences as trauma developed into psychosis which was stripped of all context, meaning and therefore any hope for recovery by the ‘support’ she was given in the Mental Health services.

People talk in terms of how many years lost, how many years locked away, numbed, medicated, and mindblasted. The sense of grief and fury is palpable.

Eleanor is an incredibly powerful and moving speaker, she has learned the clinical terminology (is in fact completing a Masters degree in Psychology) in order to speak on equal terms in the same language as the clinicians who so disempowered her. She uses their tools of reason and science to debunk their methodologies and cry foul when cruelty and sterility are passed off as evidence based practices. She shows slides of widespread brain changes evident for someone experiencing psychosis, and those experienced by people who have been chronically traumatized. They are the same.

She shows a scale of characteristics at percentages in the general population. The percentage of people who hear voices is higher than those who are dyslexic, vegetarian, left handed, have red hair, heart disease, stammer, have a PhD, or are bisexual. This is a massive percentage of our population who are at risk of receiving a psychiatric diagnosis of psychosis if they let a clinician know of their experience. But only distressed voice hearers come to the attention of the psychiatric services as a general rule, leading to a massive exposure bias for clinicians.

She is hard hitting about her own experiences, I feel like she is trying to move audiences accustomed to disconnecting from pain and distancing from human connection – the experiences of a distressed person with a mental illness whose condition is treated as an entirely inexplicable and biological phenomenon. She speaks quickly and lays emphasis on her words, they strip me of my own defences against pain and I struggle to bear her talk without sobbing. She talks about the anguish and loss for people “who have been made to believe that silence will save them”. At the end she is given tremendous applause and disappears looking pale and shaken. I want to reach out and make contact but in this situation I am only audience, a stranger who wants to tell her that what she has done is worthwhile and what she has given us is generous and superb, but who does not know her and cannot comfort her.

I think of getting a standing ovation and a million hugs following my talk in Melbourne at the Peer Work conference in 2011, how so much enthusiasm and physical contact blew all my fuses and immediately sent me into massive dissociation. How much I appreciated such incredible support but how overwhelming it all was. Hiding in the toilets until the crowd moved on to the next talk. I don’t follow Eleanor.

Dr Lewis Mehl-Madrona talks about Narrative Therapy with voices, shares slides of his people’s, his mothers and father’s Native American peoples, their traditions and healing practices. He is so warm, so mild mannered and delightfully eccentric it is difficult to believe that such a unique and individual personality survived the training to become a psychiatrist. His workshop on the second day is full of powerful psychodrama where strangers act out the voices of a brave voice hearer. The feel in the room is electric. I imagine what this would be like for me, to see my own internal world on a stage, acted by strangers. I feel naked, liberated, terrified, breathless, hopeful. A worker asks a question: how do you keep participants safe? What if they are triggered by the exercise? He seems bemused by the assumption of danger, the concern about risk, about actually doing anything that may have power and impact. (So much better to offer budgeting and simple home cooking skills) He says, we used to be afraid of talking about suicide, we thought it would hurt people. Now we talk about suicide and the suicide rates have gone down. It is the same with voices. I wish I could hear more, could sit for days and soak up this approach. I take down the details of a group in Victoria who offer training in Narrative Therapy.

Ron Coleman talks about the future, about making things better, spending less time blaming and more doing. He gives a stirring speech about citizenship and personal power. He talks about taking power, that power cannot be given, that it is impossible to empower another person. At times I feel like this is a call to war. I’m uncomfortable with this. He talks about his relief to see younger people taking up the challenge of caring for and about the Voice Hearer movement. He says “it makes no sense to talk about evidence based practice in a discipline where we do not have evidence based diseases”. He tells us that 25 years ago having a conference of this size and a movement of this strength was inconceivable. He weeps when he tells us that. I cry too. I think of Voice Hearers like him losing years and decades in psychiatric hospitals and I cry. I think of my own Dissociative Initiative and how we have so little voice, so few rights or recognition and such a fledgling community and I cry. He leaves the stage and goes away to collect himself. I run after him but he’s gone. Later he comes back and we all celebrate what has been done so far, the difference that is being made, voices that are being heard.

On the bags we are given for the conference are the words:

Not being heard is no reason for silence. -Victor Hugo

I am so glad I came.

I gave a couple of talks on the second day, read about those here.