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Shona Clarke – My Perspective

Who am I?

I’m Shona, I’m 27, and one of those people born, bred and still living in Auckland. Where am I now? I’m currently sitting in front of my laptop and flicking between writing this, and a really geeky computer game that allows me to have a ginger pet cat as my sidekick.

What do I do?

I’m a youth advisor who was ‘Out of My Mind’. My job is essentially about encouraging youth mental health services to listen and act on what young consumers are saying about the services they receive.

While my job provides ‘a perspective from a young person who has used a youth mental health service’, I feel that it’s really about helping to change negative attitudes and unhelpful practices of people in general, though more importantly, people working in the mental health sector. There is some literature suggesting that mental health services that discriminate against people with mental health issues have one of the largest influences on someone’s recovery. A number of people report stigma and discrimination from the mental health services they’ve received, and for some, the consequences are devastating (Peterson, Pere, Sheehan & Surgenor, 2004).

I also have a slightly different perspective as Psychology was my major in my undergraduate university degree, and I’m currently doing some postgraduate study as well. So, while I’m not a clinician, and don’t plan to be, I have been in the position of straddling both sides of the fence (which, I might add, can be uncomfortable!). When I began doing youth consumer work at 18, I felt I had to prove myself – that I was capable and my role was worthwhile. Learning about mental health/illness at university broadened my perspective and gave me knowledge that I could use, and still use, to inform my job.

Some of the stuff I’ve learnt at university is very much aligned with the traditional deficit-based medical model of care. This means that a professional with power will ascertain what your problems are and categorise and treat you according to these problems. This process sometimes fails to see the whole person, and consider all the other things going on in their life that might impact the situation.

We don’t all necessarily want to be ‘fixed up’ as that implies that there is something wrong with us. This approach is consistent with the dominant Western paradigm of a professional fixing, curing and helping the vulnerable disempowered “patient”.

On the other hand, some psychology aims to focus on people’s strengths and inherent abilities to promote change and create meaningful lives. This is the stuff I like to focus on and what drives me in my job and, I guess, my future career.

What drives my involvement in mental health work?

My own experience of ‘mental ill health’ and the services I used drives me, or more specifically now , the people within them that I meet, both professionals and young people.

One night ten years ago, I was sitting on my bed in my hospital room. My nurse came in and told me to get under the covers. I refused – why should I get under the covers? – I wasn’t going to be able to sleep for a number of hours anyway. I guess I was also being a rebellious teenager. The nurse grabbed my legs and arms and physically forced me under. It was relatively easy for her to do I guess, though of course I struggled. I remember flailing around thinking how ridiculous this was, being physically forced under the bed covers. She eventually got me under the sheets and left me – perhaps she realised she couldn’t sit on me all night until I fell asleep. I immediately got out of them and later fell asleep on top of the bed covers.

This was just one of many incidents that motivated me, even as a 17 year old, to want to make a positive difference in the lives of people accessing mental health services. The idea that professionals had so much power over me as a vulnerable young person and had the ability to cause fear and distress when I needed care and love, wasn’t ok. At the time I felt like I couldn’t say anything. Now I can. I want to encourage other young people to speak out when their services aren’t good enough, as well as when they’re fab.

Despite the changes in the mental health sector over the last decade or two, there is still a way to go to ensure services and the wider sector address some of the big issues. I’d like to see changes in the mental health sector that would shift away from paternalistic services towards ones where we will have much more autonomy. This means closing hospitals, bearing in mind that there are also a large number of mini-institutions and a cessation of compulsion, which includes seclusion, restraint (chemical or physical), coercion with threats of hospitalisation and particular treatments.

An increase in autonomy would occur not just within individual treatments but also with service development and delivery, and policy development. I hope that new policy documents, reports or articles, will provide the impetus for social inclusion to be practised more, and the freedom to live life as you choose, in the community. The contribution to society of people with mental health issues is potentially greater than most anticipate. It isn’t necessary for people to be isolated because of society’s fear of mental ill health.

I include young people in all of the above – they’re often missed out of new initiatives or projects unless they are youth specific ones. It’s much more difficult to involve young people and they’re less likely to be vocal about a service issue. However, it’s also incredibly important to make sure that young people as service users have the opportunity to participate in service development initiatives. Young people bring fresh ideas and can be less limited in their thinking.

How do I describe the distressing or mad experiences I’ve had?

As much as most people around me use the word, I never say I am, or have been ‘unwell’. For me, ‘unwell’ implies a physical problem which therefore means there should be a physical ‘cure’ such as medication or surgery. I don’t think my experience has a purely biological cause. While my serotonin levels or neurotransmitters may be doing some fruity or annoying things, neither I, nor any doctors, will ever know whether those neurotransmitters are acting up or whether it’s how I feel that impacts on the neurotransmitters. I tend to think it’s more about the experiences I had, and just the fact that I’m more sensitive and emotional than others. This can be challenging, but also a personal strength.

What language do I use?

I refer to myself as crazy or mad sometimes – though only in jest. I don’t personally identify as a ‘mad’ person, though I do like others reclaiming a previously derogatory word such as ‘mad’. Instead I tend to talk about the things that I feel or experience, such as feeling really sad or anxious. I don’t talk in diagnoses. I don’t particularly believe in them though I acknowledge the initial relief some people have in being able to put a name to their distressing experiences.

Whatever language is used, it’s somewhat inevitable that people will select a word to suit their own purpose. The word ‘lunatic’ originally comes from the idea that people acted more bizarrely at night (luna meaning moon). This word wasn’t meant to be derogatory, though because of the fear of people who appeared to be different, it gradually became a way to socially exclude those who society deemed abnormal.

What do I think about societal perspectives on madness and distress?

I think there are misunderstandings and misconceptions about mental health/illness etc, which leads to fear. Because I’ve personally experienced and been around plenty of people who have experienced ‘madness’, I don’t have that same fear. Instead, I understand it to be a fully human experience. Everyone can feel sad, angry, extremely happy, anxious, fearful etc, and for many this can be about reacting to the people and situations in their life. For me – I experience some of those things (and more) to a different degree than most people, and more often, which impacts on aspects of my life. I can imagine the general public could understand and empathise with someone they know with depression, more than they could with the homeless guy on the street who’s talking to someone only he can see. However both people may have had similar significant experiences in their lives.

Young people also get a bad rap in society. Young people with mental health issues can be seen as bad, and are punished for their behaviour rather than their behaviour seen as a reaction to the things occurring in their life and the social inequities that exist. In my work in youth mental health, I like to think of young people as having problems or some things that aren’t working that well in their life. Whatever they are experiencing, be it mood, thought or behaviour related, it’s a glitch. Being a resilient young person, this ‘glitch’ won’t be a life-long debilitating issue as it may have been up until ten or so years ago. Community based care and early intervention also encourage a more hopeful outcome for young people and their families than did the historical hospital-based approach.

Not only does society tend to have a warped understanding of mental illness, so too do people who have the power to make policy changes. Plenty of people (including those in government who should be relying on research rather than media sensationalism) believe that people with mental illness are dangerous and violent. However, when you look at the stats, these ‘mad’ people are more likely to be victims rather than the perpetrators of violence.

It’s not all bad though. Various mental health promotion activities and campaigns serve to facilitate more positive portrayal of ‘mad’ people, and there are many initiatives occurring both within the mental health sector and other sectors that do valuable things with, for and by people with mental health issues.

What do I see as the value of my experiences?

I tried to include the value of distressing experiences in a workshop about mental health with some young people who had only recently been diagnosed and were transitioning back to school, a course or job. They really struggled. They didn’t see themselves as having a mental illness, at least not yet, not until they’d been repeatedly told by people that they were unwell. They also had difficulty getting their head around it because they didn’t see anything good had come from their experience at that point. They weren’t at school hanging out with friends, they may have been in hospital, and were pretty likely to be distressed. I’d experienced those things too, but they were a couple of years behind me. Now I was facilitating this workshop that I not only enjoyed, but was also a good confidence boost. Of course there was heaps of value in my experience – I had an exciting job because of it, and this has since led to a number of opportunities I wouldn’t otherwise have had. While my experience was distressing at the time, in hindsight I see that it has given me a unique and worthwhile perspective to whatever I’m doing.

In school, I was never a leader. I was quiet, and not one of the popular kids. Public speaking in my job was revolutionary for me, for while it provoked anxiety, it gave me the opportunity to talk and express my opinion. Everyone had to listen and it was nice knowing people thought I had something worthwhile to share! These public speaking opportunities initially came about because I’d utilised a youth mental health service and these opportunities made me think critically about my experience. I found it meaningful to educate people from my perspective as it felt like I had gone through what I went through to make a difference in the lives of others, particularly those that use mental health services.

I believe my experiences make me more empathetic, more compassionate and more able to help others going through difficult times. I’d like to think my skills lie in places other than therapy and at the moment I enjoy doing project-based work that will hopefully benefit others.

How have my experiences impacted on my work?

My experiences have made me passionate about the mental health services that people (especially young people) receive. It’s this that motivates me in my job, and hopefully my passion helps me work better. Perhaps I put too many of my eggs in one basket, and it can be frustrating and disillusioning when the mental health (and other related) sectors take so long to change. However, I enjoy the focus on hope and strength that young people bring. I like that young people don’t think in terms of ‘mental illness’ or state that they are unwell or crazy, but refer to their problems – things to be solved.

How have my experiences changed me?

Because I experienced my mental health issue through much of high school (and my undergraduate degree at university), it’s kind of hard to separate my experience of mental distress from who I am and my perception of the identity I was in the process of forming during this time. I think rather than changing me, it hugely contributed to the formation of the person I am now. I’d probably be doing a very different job and have different passions if I hadn’t experienced my mental health issues, though I really can’t imagine it. In some ways I don’t want to – working in mental health makes me feel worthwhile because I’m aiming to make a positive difference in people’s lives. I’m still working out what life is about, so when I have an existentialist crisis, it’s reassuring to believe that my aim is to positively impact others. Whatever I end up doing career wise, I think I’ll always be passionate about people’s mental health and hope that I continue to have opportunities to influence mental health services inNew Zealand.

Reference

Peterson, D., Pere, L., Sheehan, N. & Surgenor, G. (2004). Respect Costs Nothing: A survey of discrimination faced by people with experience of mental illness in Aotearoa New Zealand. Auckland: Mental Health Foundation.

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