The seeds of my recovery: A new community and a little Scotswoman

find your way medium
 

I am not sure when it happened. But at some time between naming the dream, and starting to work towards it, in a myriad of tiny little ways, the dream began to take hold of my heart. It transformed from a joke into a deep motivation. I wanted to do this. Kaz would help me to do this. I could do this.

In this article I explore how the seeds of my recovery began to take hold after I went to a community-managed mental health service.

For the first time, I found control, hope, meaningful connections, and eventually, life dreams.


 

The disappointingly boring day-to-day existence of a mad woman

I hate to ruin a good stereotype, but being mad can be incredibly dull and demotivating.

Despite what most procedural cop shows may have you think, we mad folks do not spend all that many of our days in quests to save the world, conducting serial killing sprees or talking to inanimate objects.

My friend Lyn would like me to mention that we do not cover our walls with pictures and attach string to form odd connections. This is another product of Hollywood, rather than anything we have ever done or seen our friends do.

Although writing on the walls is something we sometimes do. Usually because we can’t afford decent paper, but not always. In a world where you feel invisible, sometimes a blank wall is just begging for a statement.

I’ve decorated a few walls in my time. Once I painted a small wall in a hospital meeting room with giant question marks using my own blood. I was lying on the floor, legs up on a chair, admiring my concise and dramatic commentary on life when a nurse came in. She was, of course, immediately confronted with the glow of my self-admiration and my brilliant artistic exposition. She disappeared quickly. Cool, I thought, she was moved by my work. But a few minutes later she returned with a bucket of soapy water and a sponge. Clean it up, she said briskly, then sat down on a chair to supervise. Philistine.

Given that most of our lives is not particularly filled with dramatic endeavours, you may wonder what mad people actually do use to fill their time. Or perhaps you don’t. Never mind, this is my story and I shall tell you anyway.

Medical appointments fill up much of our time, and excessive sleeping as a result of sedating medication also digs into the schedule.

But once these duties are out of the way, then time stretches out like a river peppered with crocodiles lurking just under the surface. Doing almost anything requires wading out into that river and taking the risk of rejection, scorn, being overwhelmed, drowning or failure. Besides, I had no energy, no money, I looked like a freak and most importantly, had no reason to do anything, anyway.

My future as a mental patient was sealed – I would either stay mad and poor, or at some point I would finally end myself. The safest route for me was to spend most of my time at home doing as little as possible besides trying to survive being me. Television, staring at walls, self-harm, doodling with my art and writing were common activities.

My writing filled many journals with scribbles and philosophical ponderings. Like, a lot. My medication made it difficult to concentrate on reading, but from time to time I would try to take in a book, usually self-help or philosophy. They rarely helped. For some reason that is inexplicable to me today, I would occasionally spend hours sitting beneath the table in my flat. I like to imagine that it felt safe, that it reminded me of building forts under the kitchen table when I was a child. But really I have no idea why I did it. So, that’s probably a little mad, I guess.

Music was a great comfort to me during these years, and I spent many hours lying on my bed or the floor immersed in sounds and lyrics that spoke to my soul. The dark lyricism of Nick Cave always moved me. I felt like he understood, perhaps more than anyone else. Besides which, the man is a poetic genius – the way he paints with words brings a beauty to dark feelings that often helped me to carry on, to find a grace in my pain. The ethereal escapism of Portishead and Bjork carried me away from myself and into a world of sound respite, and in later years Mazzy Star joined this list, too. Listening to Radiohead felt like a sound painting of my melancholy, and I felt their comradeship echo around me in my rage at myself and the world for letting my life come to this.

I sometimes wonder if my musical tastes made me more unwell by reinforcing my dark moods, whether they were a simple regression to teen-angst, or whether they provided a connection and understanding that I couldn’t find anywhere else. There is nothing quite like being immersed in music that reflects your deepest feelings, that wraps itself around you in familiar solidarity. I don’t know the answer to this: perhaps it was both helpful and problematic, like a good friend who keeps leading you into mischief.

My self-harm was wrapped up in my art work by this time, so when I did make art it was macabre and disturbing, although I spent less and less time at classes or in my studio. I took time off regularly, and missed some semesters entirely. Universities have this convenient option called ‘special consideration’ for people with disabilities, so somehow this was OK too.

My career as a low functioning mad woman did not require much in the way of grooming or accessories. As the days rolled into each other it became less and less important to shower, or even to get out of bed. From time to time my mother would visit and point out that I hadn’t been brushing the hair on the back of my head. Painful hours would ensue as I tried to detangle my self-forming mega-dreadlock of horror.

Many mental health consumers struggle with personal hygiene. But even knowing how common this is, and appreciating the reasons, it is nevertheless confronting to look back on myself and know that I had reached such a low point. These days it is a continual reminder of my dreams and new-found strength when I paint my nails, wash my hair or put on fresh new clothes. I love lipstick and wooden beads, brightly coloured tunics and giving myself facials. Yet once I would wear the same shabby, blood-spattered clothes for more than a week.

The points of drama in my life came with crises. When everything became too much, and I would end up in hospital. For a time my hope would heighten that things were about to change, that the cure was about to be found. But then nothing really did change, after all. I always had such hopes that hospital and doctors and nurses would heal me. But more often than not, after a hospital admission, I felt much, much worse.

Finding safe haven: My first encounter with a community mental health service

I spent most of my days hiding inside my little flat. But my friends Athena and Nick (not their real names), who were staying with me for a spell while they looked for accommodation, would regularly head off to attend art classes at a local mental health service called Prahran Mission.

I didn’t know anything about this place, but it sounded like it might be full of evangelical missionaries looking to save mad souls.

It seemed a little odd to me that an independent woman like Athena would attend a ‘churchy’ kind of community program.

One afternoon I asked Athena why on earth she went to this place. She proceeded to enthuse about free art classes, friendly people, a support worker she loved, and really cheap lunches. No preachy stuff at all, apparently. Hmmm.

My finances were in a particularly bad state at the time: not only was I resorting to generic-branded chocolate as my treat of choice, but it was generic-branded, compounded, cooking chocolate. The stuff had the texture of soap and the flavour of an old dishrag, but poor chocoholics do as poor chocoholics must.

Anyway, the idea of a free and friendly art class sounded like something sent from heaven. I was less sure about seeing a support worker, but I was willing to give it a go, especially with Athena’s endorsement. I did not know what I was getting myself into.

After a brief period of practiced avoidance, forgetfulness and procrastination, I eventually took myself along to this Prahran Mission place. It was located smack in the middle of Chapel Street, a grotty reminder of the working class origins of this now trendy inner city shopping strip.

I was assessed straight away and assigned a support worker by the name of Kaz Mitchell. I didn’t know it, but this woman was an angel in the guise of a short, smiling Scotswoman in a cable-knit jumper.

It turned out that Prahran Mission was a government-funded mental health service. What they called at the time a ‘Psychiatric Disability Rehabilitation Support Service’, or PDRSS for short.

I couldn’t even say the thing, let alone make sense of it, but the free art classes were real, and just as Athena had promised, there was not a missionary in sight.

The program was free for people in my situation, and everything was voluntary. It felt like nothing or nowhere I had been before. It kind of felt like home.

What’s more, there were woodworking and writing classes, art therapy, groups on coping skills, and a shabby friendliness that felt nothing like either a psych ward or my imaginary fear of missionaries lying in wait to save my soul.

Funny really, since this place was eventually going to help save me.

About community-managed mental health services

Today in Victoria, these PDRSS services are called ‘Mental Health Community Support Services’ (MHCSS). These types of services are run all over the western world as an adjunct to psychiatric, medical services, and they’re typically government-funded and not-for-profit charities.
These organisations grew substantially after the mental health system deinstitutionalised in Australia during the 1980s, and they provided an essential service to people who had spent most of their lives in locked psychiatric hospitals, and who were now gradually released to live in the community.
Organisations like Prahran Mission and others provided essential support and resources for people to adjust to independent living. For many this involved practical help such as food parcels and shelter, learning to cook, clean and shop. Social activities and human connection was also essential.
Over the past twenty years they have developed models of practice around mental health rehabilitation that stretches beyond just practical support. They offer what are sometimes called ‘psychosocial, recovery-oriented interventions’ that can be highly therapeutic.
Today I work in another one of these types of organisations, called MI Fellowship, where there is a strong focus on supporting people to achieve self-defined recovery in the context of our communities, and our families (whether that means family or origin or family of choice).
Many of these organisations have been strong advocates of social justice issues in mental health. They have promoted the consumer and carer movements, been leading employers of peer workers, and provided essential alternatives to hospital-based, clinical and involuntary treatment. Most of all, they have embraced the consumer-developed concept of recovery. That is, that recovery does not have to mean getting rid of symptoms. It’s about living a life that we choose and value.

How this little community changed my life

If you haven’t been there, you cannot overestimate the despair of aching loneliness and self-loathing that so many of us consumers live with.

Human connection is something most people take for granted through family, friends, colleagues and neighbours. But when you look and behave in ways that are strange and different, and when the media promote terrible and untrue myths about us being dangerous… then, well, people have a tendency to drift—even run—away. And those people who do remain in our lives do not always help to build us up, despite the very best of intentions.

People tend to speak about us differently, often patronisingly, and they stop asking for our opinions. Although they are often happy to give us theirs. Loved ones can go to great lengths to try and save us from ourselves. An honourable, though generally doomed, intention. It is hard not to feel that we bring shame and disappointment to our families, discomfort and fear to our friendships, and annoyance and disruption to our neighbours.

Prahran Mission provided me with an equalising environment to the rest of the world.

Everyone is mad here. And nothing bad happens here (unlike hospital).

Oh, what a relief.

When the need to apologise for yourself, and to hide, is lifted, when others may be just as smelly or dishevelled as yourself, and when acceptance of you as a human being, just as you are, is so strong that you can almost feel the embrace of shared humanity wrap itself around you… well, it just somehow feels easier to keep on breathing. To be. To belong. And for me, from this place of belonging came a strength that made so much more possible.

When I first met my own new support worker, Kaz, I was not aware of any of the ‘goals’, ‘work’, or ‘skills’ business, and a good thing too or I probably would have run for the hills. Those free art classes were on my mind, and I was hoping that perhaps this support worker might be someone nice that I could chat with. It gets lonely being mad.

Kaz was, and remains, little in stature, but that is the only little thing about her. A fiery Scot with spiky hair and a cheeky grin, Kaz has an enormous heart, an unshakable belief in the capacity of people to heal, a deep respect for the people she works with, and a great fighting spirit that I am sure her ancestors would be proud of.

Kaz taught me to dream again, to believe that anything was possible. She encouraged me to make art and to take pleasure in small things.

The special gifts of groups

My time in the art room and the woodwork room at Prahran Mission were deeply special to me. It was the first time in years I felt I had a place that was safe, where I would be accepted no matter what, where nothing bad would happen to me and no one would judge me. I relaxed. And in that space I was able to learn to dream again, for the first time in many years.

Groups in the art room were my favourite. Unlike going to art school, where everything was about criticism and theory, or community art groups, where I felt different and unwelcome, or just couldn’t afford them, at the Mission it was just about taking the time to enjoy the process.

I could chat with others, and create anything I wanted without judgment. Mind you, my internal judge was still there and plenty busy with commentary… but having a space that reinforced something different, something positive, was important to me.

I made a friend, Inez, who loved art and was struggling with madness too. She challenged me to believe that beauty was a good thing in art and that I should embrace it. The idea of exploring beauty was especially tantalising to me. So much of my life was caught up with feeling evil and disgusting, that there was something almost sacred about looking for visual pleasure, and about taking the time to appreciate it. I found that the process of art making was soothing, regardless of what I ended up with.

Through group I met many fellow travellers who faced similar struggles, and we shared many long chats after groups where I felt that I had made a new and special understanding. We gave each other hope and encouragement.

Looking back on these years, I think those group spaces provided a kind of launching pad for me to face the rest of the world. In groups I could practice how to talk about difficult stuff with others. I could be brave. What’s more, there are some things you can only really talk about with people who have been there too.

I joined a woodworking group, too, run by a gorgeous fellow called Peter.

Initially I was rather frightened of all the equipment. I didn’t know how to use any of it, and Iwas half worried that I would be tempted to self-harm with the table saw and wind up without a limb.

But Peter took such care to take me through the safety procedures and to make me feel welcome that it would have been a real betrayal to do something like that in his group. He trusted me, and I wanted to live up to that trust.

I remember Peter giving us different blocks of wood and showing us how the grain and colour differed, and getting us to inhale the aroma of the timber. I had never before stopped to smell a piece of wood. A simple thing, perhaps, but still a delicious fragrance in a life that otherwise stank. Little things, big impacts.

One week we put some old reclaimed floor boards through the finisher machine. Some builder had donated them to the Mission rather than taking them to the tip. I was stunned to see these wizened, gnarly old grey planks come out the other end of the machine with a smooth, rich, glowing red finish. The timber was so beautiful, and this beauty had been inside the horrid exterior the whole time. Discarded and unvalued until we found it. It gave me something to think about in terms of transformation and renewal.

One class I told Peter how I couldn’t afford decent presents for my niece and nephews, and that I was fretting over my youngest nephew’s upcoming birthday.

Peter helped me to design and make a wooden jigsaw puzzle over several months, and then I painted it in the art class. It was a little beetle car, with my nephew’s name on the number plate. Every cut and brushstroke was made with love on that little puzzle. I was so proud when I gave it to him. While it wasn’t as fancy as a shop-bought toy, it had been months of hard work and love.

jigsawI guess another charity might have given me a donated toy to use as a gift. But I think what the Mission did, in supporting me to make my own special gift with the few resources I had, was far better. Not only did I have a gift to give, but renewed confidence in myself, a sense of pride and new skills.

It turned out that I spelt my nephew’s name incorrectly on the puzzle, so my sister and I had a slight tangle over this. I felt so ashamed, but I compensated by telling her that she had spelt her son’s name wrong in the first place. Perhaps not the smartest of strategies. But we got over it as sisters do.

These woodworking skills were something I would use for years with my nephews. As they grew up we worked together on many projects: planes, robots, cars and monsters. It was a cheap hobby, but a fun one. Despite my lack of money I was able to share something valuable with my nephews. We all loved stretching our creativity to make cool things with little money.

These skills may not seem directly relevant to mental health recovery, but I think they were. They gave me confidence, something to share with those I loved, a way to feel capable and valued, and, perhaps most surprisingly, indirect and existential lessons on life that had a very deep value.

Finding the dream that powered my new life

Kaz would meet with me regularly, and she was unremittingly, sometimes annoyingly, positive.

She pushed me to dream of a future, to dismiss all the messages of the naysayers, and to imagine what I could be if anything were possible.

She spent month and months hounding me to dream, to imagine my future. I thought she was nuts.

I knew my future. Proper doctors had told me about it: I was going to be a psychotic borderline on the pension. I was always going to need these drugs, which meant I was always going to be fat, half asleep and not able to think properly. I would probably never work again. I would never get married or have children. I might end up having to live in a supported home. My future sucked. Unless I found the ‘courage’ to end it all. These were my options. Or so I thought.

In the end, after many months, and almost to shut Kaz up, I said that it would be nice to have her job. Kaz got to help people, she worked in an art room – she made it a better world in kind and creative ways. Kaz had been talking with me about my values, and I could see that her job seemed to embody the things I most cared about: kindness and creativity.

And so Kaz, bless her, wrote that down as my goal: to get my keyworker’s job. She never once tried to limit my dreaming to something more ‘realistic’ as many workers would have, but instead helped me plan how to make this a reality. It was slightly startling. But her faith in me was hard to argue with. I mean, have you ever tried to argue with a Scot?

I began with volunteering in the art room, washing brushes and tidying. A canny move on Kaz’s part, really. Participants were often somewhat sloppy and rarely cleaned anything properly. I saved Kaz many hours of cleaning, and the cost for replacing dried up brushes and skanky, crusted over old palettes. But I enjoyed the responsibility.

I began to really care about the state of the paintbrushes, in particular. I searched on the internet to find out how to best wash and care for brushes. I learned about how paintbrushes were made. Did you know, for example, that you shouldn’t wash a paintbrush in hot water? The heat can weaken the glue and make the bristles come out.

I tried to educate my fellow participants about this and put up instructions over the sink. I decorated an old shoebox and labelled it as The Paintbrush Graveyard, where I laid to rest those brushes that were past saving. Some people took these home to have a go at saving them for their own use.

Eventually Kaz asked me to help her facilitate some art classes, and before long I was ready to run my own class. I hadn’t felt this passionate about anything in years, and I spent days researching and planning each two hour art group. Within a year or so of becoming a volunteer, Kaz had offered to pay me as a casual group facilitator. I was actually earning some money from doing something I loved!

I am not sure when it happened. But at some time between naming the dream, and starting to work towards it, in a myriad of tiny little ways, the dream began to take hold of my heart. It transformed from a joke into a deep motivation. I wanted to do this. Kaz would help me to do this. I could do this.

There is something very different about being told you can do something (hope), versus being supported to actually do it (action). It was a remarkable boost for me, and had all sorts of positive recovery benefits.

My personal hygiene, for example, made huge improvements. In the past, nurses had focused on my need to shower or to get out of bed, and it had never had an impact, because, of course, I had no reason to care about myself. But with big dreams and someone who believed in me to make them real, I had every reason to work on myself. I was up and out of bed, I was planning for the future. I didn’t shower because ‘it was my goal’ or ‘because I should’. I showered because that’s what support workers did, and I was going to become one. This new role and its associated responsibility gave me the motivation to do my therapy, to keep on trying.

I had an identity other than as a madwoman, or a loser, or someone evil, and I loved it.

I thought a lot about my identity at this time, and eventually I changed my name to reflect the other changes happening in my life. I felt like I was being re-born, and I realised that the core values that Kaz had helped me to find, compassion and creativity, were something I must never forget. And so my new name was a way to reflect this, and all the fundamental changes that were beginning to happen in my life as a result.

I chose the name Indigo to represent creativity. It is a colour I love, hovering between violet and blue. It’s the one colour from the spectrum that most often gets forgotten. But it’s beautiful and it’s real. And I chose Daya, an ancient Sanskrit name, that means compassion, kindness, or mercy. The sound of it felt right, somehow. Like me. Like my new life that I was beginning to create.

There was so much more work to come. This was only a beginning. But, oh, what a marvellous beginning.

 

PS: Incidentally, that dream came true. Several years down the track, Kaz was promoted and I was offered her old job. Kaz went from being my support worker to my team leader, and I became the first consumer hired as a support worker at Prahran Mission. The five years I spent working in that little program were a magical time, and launched my life into many exciting new directions.

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7 Comments
  1. Thank you for sharing your incredibly honest and witty account of that special transition period in your life…I cried and laughed the whole way through it. It so mirrored my own recovery journey and reinforced what I wish for others who are still imprisoned by lack of hope or belief. Your insights are a treasure which I am collecting!

  2. A really inspiring story-thank you.

  3. I loved reading this so so much.

    Also, I would like to interview you about your experience as being the first consumer worker at Prahan Mission.

    Best wishes xx

  4. One thing of note; How does it come to be that people have no close family or friends as a supportive network to work with them during their decent into psychosis? What does a person do to alienate those closest to them? Is it the denial that they are mentally ill? and the resistance to timely treatment? how does a person spiral so far down that close family and friends distance themselves?

    • Hi Margaret,

      You pose a series of complex issues in your comment that is going to need a long response. These are difficult questions, and there are no simple ways to reply.

      1. Not everyone is isolated from family and friends

      Some people do have family and friends around them during a crisis, and some do not.

      2. We can’t assume the person is the cause – there are many reasons for separation from family

      I think it is very problematic to assume that the person in distress has been the cause of alienation – there are many possible reasons why people can end up isolated from family and friends. Some common reasons worth highlighting are:

      a. Stigma is alive and well. Many friends and family do not know how to respond to someone who seems to have a ‘mental illness’, and so they stay away. Some even intentionally push away their family member, either because it is too hard to deal with, or because they see that person’s distress as bringing shame to the family. This last point is common to some cultural groups in particular.

      b. Family self-protection: Sometimes family and friends stay away from us as a self-protection measure. After a long time of being exposed to crises and distress, it can just feel too hard for people to keep seeing us in these states. Friends and family can experience hopelessness, helplessness and distress too.

      c. Abuse within families: Most people who end up as patients in a psychiatric ward have a history of childhood abuse or neglect. Much of this abuse, but not all, can be attributed to one or more family members (see the statistics at the end of this comment). As a consequence, sometimes people intentionally separate from abusers within their family, and sometimes even from their entire family.

      d. Consumers protecting their family: Sometimes we protect our families from knowing about our struggles, because we don’t want them to worry.

       

      3. The words we use matter a lot.

      You may not be aware of this, but some of the language you have used has meanings which I, and many consumers, find highly problematic, and often part of why the mental health system can be so unhelpful and even damaging. I don’t point this out to be critical per se, but in the hope that you can better understand a lived experience perspective. These are some of the problems:

      a. ‘Decent (sic) into psychosis’: It is important to understand that not everyone’s experience of what is commonly called ‘psychosis’ is negative. Hence, there are problems with saying that people ‘descend’ into psychosis. Hearing voices, for example, is a fairly common human experience, reported by about 13% of the population. Yet less than 1% of people are diagnosed with a psychotic condition. Most people find ways to live with hearing voices, and many even find it a valuable and meaningful part of their lives. I personally know many people who would never want to lose their voices. Incidentally, that includes myself.

      b. ‘Denial that they are mentally ill’: I personally have multiple problems with this statement.

      Human rights issues: The idea that we deny ‘mental illness’ is a common justification for compulsory detention and treatment. This is an idea fraught with assumptions and bias, and is the basis for the violation of many of our fundamental human rights. The Office of the High Commissioner for Human Rights, from the United Nations has criticised Australia for its human rights violations in relation to mental health treatment (read the critique here).

      Questioning the concept of ‘mental illness': Why does a person have the right to ‘deny’ any type of health condition except for supposed ‘mental illness’? I am someone who denied that I had a ‘mental illness’: and I still do. The entire concept of ‘mental illness’ is fraught with problems:

      My first and foremost problem with the idea of ‘mental illness’

      …is that my healing came about, ultimately, through understanding the impacts of my childhood abuse. Psychiatrists had told me that my brain chemistry was damaged, but in fact, it was society that was damaged, not me.

      Further, none of the treatments that psychiatry forced upon me were helpful. They distressed me further. And psychiatry advised me against addressing my trauma; one psychiatrist even directed my therapist to stop talking with me about my childhood. But I found ways to do this therapeutic work anyway, against medical advice – and it was life-saving. So, not only did psychiatry make me more unwell, but they advised against the very things that ultimately helped me to heal. All good reasons, I think, to deny ‘mental illness’.

      Incidentally, I also reject ideas that I am ill or defective when our society still allows so many children to be hurt – and then denies it or covers it up. My reactions to my abuse were normal. The reactions of psychiatry to my distress were ill-informed, damaging and unjust.

      A second problem with the idea of ‘mental illness’…

      …is the validity of the Diagnostic and Statistical Manual (DSM): the industry definitions of ‘mental illness’. The DSM has received increasing criticism, not just from consumers, but from the mental health sector itself. Issues include:

      – The well criticised weakness of much of the research to support diagnoses, and the high proportion (about 67%) of DSM committee members with financial conflicts of interest in the pharmaceutical industry.

      – The way that ‘illnesses’ change in the DSM. For example: Up until 42 years ago homosexuality was a mental illness, now it is not. Until two years ago I could be diagnosed with schizophrenia just for having ‘bizarre delusions’. Now I cannot – the committee accepted that this criterion was flawed and subjective. Shame for the thousands of people who had this subjective, flawed criteria used as a basis to take away their human rights for so long.

      – There continues to strong and widespread critique about the way that the DSM is increasingly medicalising normal human emotion and experience, and the growing focus on biology and neurology to the exclusion of social and psychological factors. For example, since the last version, grief which lasts for more than 2 weeks may be diagnosed as major depressive disorder.

      Read some critiques of the DSM:
      Critique by Allen Frances (psychiatrist and previous chair of the DSM IV committee),
      An international petition about the DSM
      A critical review of issues with the DSM

      c. ‘Resistance to timely treatment’: This is problematic for different reasons. First, because many of us do not receive anything like a ‘timely’ response. There is a joke in consumer circles, which is not really funny. It goes like this: If you really want and need help, for god sake don’t ask for it. Tell them that they can never make you go to hospital. It’s the surest way to get in. The second reason this is problematic is that there is a bit of an assumption here that treatment is effective. The sad fact is, that for many of us, it simply isn’t.

      4. Barriers to family inclusive practice

      I would also like to comment about some of the barriers to family inclusive practice that are well known in mental health systems. Because of course, despite all of the very sad options I outlined above, many of us do have at least some loving family or friends who want to be involved, and who we want to be involved.

      a. Clinical alliances with families: I think our current psychiatry services set up an unhelpful dynamic between people and their family/friends. So often, I have seen family, in particular, enlisted by nurses or doctors to become ‘allies’ of the clinical team. Family are asked to help encourage, or even enforce, medication compliance, for example. This immediately aligns the family with the clinicians rather than with the person. It’s the opposite of what should be happening, and can cause family mistrust and splits.

      b. Poor practice in talking about family and friends: Services are often quite woeful in how they talk about family and friend involvement. It is so often just a simple ‘tick box’ question (‘do you want your family involved?’) rather than a conversation. Rarely are options presented to us about different ways of involving family and friends. Rarely are there conversations about what could be helpful here, or discussions about how we can actually choose what our family is told, and what they are not told.

      c. Open Dialogue: I don’t know if you know about Open Dialogue, but it is an approach which is gaining increasing support and evidence. I mention it because it works with people in the context of their friends and chosen family, and in the community rather than in hospital. It is the kind of approach that could substantially change the way we work with people.

       

      Statistics about childhood abuse and families

      From the Australian Institute of Family Studies:

      “From the evidence available, it is clear that with the exception of child sexual abuse, children are most likely to be abused or neglected by parents and/or caregivers (Australian Bureau of Statistics [ABS], 2005; May-Chahal & Cawson, 2005; Sedlak et al., 2010).”

      “Research suggests that child sexual abuse is perpetrated by a wider group of people, including parents, other relatives, siblings, friends, or others known to the child (e.g., sports coach, teacher, priest).”

      “Findings from the ABS Personal Safety Survey (2005) indicated that of participants who had experienced physical abuse before the age of 15, 55.6% experienced abuse from their father/stepfather and 25.9% experienced abuse from their mother/stepmother. A further 13.7% experienced abuse from another known person and the remainder were family friends, other relatives, or strangers (ABS, 2005).”

      “Only a person who has a responsibility to provide appropriate care for a child can fail to provide that care, therefore neglect is predominantly a parental issue. However, other individuals who have been charged with the care of a child, such as foster carers, teachers or child care providers can also be responsible for neglect.”

      “Contrary to other types of abuse, research suggests that a far greater number of child sexual abuse offences are perpetrated by adults who are not in a caregiver role (ABS, 2005; US DHHS, 2005). Findings from the ABS Personal Safety Survey (2005) indicated that for participants who had experienced sexual abuse before the age of 15, only 13.5% identified that the abuse came from their father/stepfather, 30.2% was perpetrated by other male relative, 16.9% by family friend, 15.6% by acquaintance/neighbour, and 15.3% by other known person (ABS, 2005).”

      “From the limited research that is available, emotional child abuse mainly comes from parents/caregivers and can come from both mothers and fathers. In the United States 4th National Incidence Study of Child Abuse and Neglect, 73% of all incidences of child emotional abuse were from a biological parent, 20% from a non-biological parent, and 7% from an other person (Sedlak et al., 2010).”

      My comment on these statistics:

      “Trauma is just about blaming families.” I have heard this perspective over and over from some family members and carers of people diagnosed with ‘mental illness’. I have also heard it from workers who are concerned that addressing trauma will lead to inappropriate and harmful blaming of families.

      This type of comment can be exceptionally harmful, but it does also represent complex issues & histories which must be understood.

      I think it is absolutely harmful and wrong, in that this type of comment can be used to silence victims of trauma. I have seen this happen. Where services simply will not speak about trauma in families, for fear of alienating carers. And so the person in distress has their experience denied and covered up. This is never OK. Personally I find it abhorrent. I have witnessed a young woman commit suicide as a result of this type of denial, where services continued to support her abusive father to have a say in her life.

      However the perspective from which it comes holds truth as well.

      We have a poor history in mental health services in how we treat families. For a long time there was this dreadful concept called ‘refrigerator mothers’, where professionals blamed the mothers of children diagnosed with autism for being ‘cold’ and ’uncaring’. This idea is now discredited, but it did enormous harm to many families. The idea of cold and uncaring families flowed into mental health as well. Many family members of people affected by mental illness, especially those who have been involved with services for several decades, have experienced blaming and exclusion by mental health professions. Even today this continues for some people.

      Addressing trauma does not and cannot mean a wholesale blaming of families. In fact, blaming anyone is not all that helpful, anyway. Although justice is something different, and important. This is not to say that families are not sometimes, perhaps often, the source of trauma.

      The issue here is that we must find ways to support people to address trauma while at the same time to support families. And we must stop making assumptions and have a more nuanced understanding of what happens in families.

      Both things matter.

      Families are not perfect, by any means. But even if trauma has occurred within a family context, this does not mean that the family member in front of us today was a party to this trauma, or even knew about it, although of course they may do. It is even possible that a family member of a consumer may have also survived trauma, for example, in situations of domestic violence.

      • Families can be one of the most important recovery supports for people.
      • Abuse does occur in a substantial proportion of families.
      • We must find ways to work in mental health which hold both of these truths.
      • As always Indigo, I relish reading anything you write and this blog did not disappoint. I am however, dismayed by Margaret’s response, which unfortunately isn’t unusual … still. I’m particularly interested too, because if I noticed correctly, there’s a social work qualification alongside Margaret’s name. Your response to Margaret’s post was comprehensive and well-articulated I reckon.

        My considered response comes from a couple of positions: as a social worker of 21+ years and as the life partner of someone with lived experience of mental distress that is rooted in multi-layered trauma. The connection isn’t difficult to understand. We both knew this many years ago, long before contemporary understandings and language were present for us to
        give a name to what had happened.

        There’s extensive research and ‘evidence’ out there from academics and folks with lived experience(and these categories aren’t mutually exclusive):that supports myriad frameworks beyond the dominant discourse bio-medical model of mental distress, and which also challenges the language still used by many folks for that which is described in the DSM’s, that many folks reject.

        As a social worker, my everyday practice is informed and influenced by and firmly positioned in trauma-informed and social determinants of health and wellbeing perspectives. I also am richly informed by Narrative Practice or Approach which is about non-blaming or pathologising individuals and instead thinking … “the problem is the problem.” Externalising.

        I’m not saying that trauma is present for all folks who experience mental distress. Being embedded in trauma-informed practice though, importantly, provides a space for folks to be invited into telling their story if they wish and if there’s a story to tell. There’s always stories to tell, we’re human beings after all!

        Through my social work journey, I’ve met with too many folks who have an acquired diagnosis or two or three, who, when provided with an opportunity to tell me what happened to them, then these folks do tell me of their unique stories which invariably include trauma in it’s diversity. I include many elements in the trauma space and will not limit this by naming anything.

        That’s not for me to do. It, trauma, can be a consequence of a range of “things that happen” from across various domains in a person’s life: and/or a unique one-off event that happened. There’s no score or tally card for me as someone who bears witness as an outsider to the impact of trauma and mental distress.

        I and many folks know and get, that the awful, awful stuff … “that the bad things that happen to you can drive you mad.” Dillon, Longden, Johnstone in “Trauma, Dissociation, Attachment & Neuroscience: A new paradigm for understanding severe mental distress.” Journal of Critical Psychology, Counselling and Psychotherapy (Vol 12, No 3, September 2012).

        People across society may be distanced or not connected with family, friends, support systems for myriad reasons in my experience. Mental health issues or mental distress certainly doesn’t have ownership of the reasons and isn’t something I’ve known to be the primary reason.

        Terrible and awful things happen within families (in the broadest context) as well as outside or beyond families, in my experience.

        The very best I can do as a social worker, is to remain genuinely and eternally curious. This curiosity: this “I wonder what happened” mindset, has, I believe held me in good stead and will continue to do so as folks and I cross paths into the future.

        Alongside this, I continue to strenuously reject the language of ‘mental illness’ and at every opportunity, both overtly and covertly, within systems, work to promote what I believe: that recovery can and does happen.

        It’s my ethical obligation to do this as a social worker: the personal is the professional is the political.

        • Hi Lanie,

          Thank you so much for your post, for your acknowledgement of the many complexities that challenge us in life, and for your descriptions about how you approach your work. I wish there were more like you in the mental health system … and that everyone would read that paper by Dillon, Longden & Johnstone!

          I have no doubt that we will change the ways in which people understand and work with profound mental and emotional distress and difference. With the accessibility and reach of the internet, and as more and more of us with lived experience are able to tell our stories, and as consumers become an increasing part of the mental health workforce – in practice, policy and academia, these changes are already beginning. The truth of our stories is appearing in all sorts of places, and becomes harder and harder to ignore. This is not just health reform, it is, as so many before me have said, a slow-burning but powerful civil rights movement. Change will not happen quickly, because systems always resist change, but I think it is inevitable.

          Warm regards,
          Indigo

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