Funder by the Department of Human Services Auspiced by Our Community

CONSUMER PERSPECTIVE


'Consumer perspective' is a way of looking at mental health that values the lived experience of those who have been diagnosed with a 'mental illness' as a crucially important source of insight. It means looking through the prism of emotional distress, 'mental illness', craziness, or whatever other way we choose to describe ourselves.

Consumer perspective, by its very nature, is pro-consumers, wary about the world, wary about medicine and other discourses, and framed by a deep respect for people who have been labelled in these ways. For more information on consumer perspective, see www.ourconsumerplace.com.au/helpsheet?id=4755.

Consumer perspective is singular, unlike consumer views, which are plural. It is singular and it is imperative. Consumer perspective defines who we are if we choose to sit on committees in the mental health sector, in government or in policy-making bodies. Consumer perspective informs and guides our contributions to decision-making, points of argument, service delivery review - indeed, anything that a committee or other body might examine.

Consumer perspective holds our integrity, our ethical judgement and our values. Consumer perspective is a rare and valuable resource. We need to develop aids and rehearsed ways of describing it that we can bring to any committee we sit on. We need to develop resources to help us do that.


Bringing consumer perspective to a committee

Bringing consumer perspective to a committee or other body is different from being a consumer 'representative'. Consumer perspective requires us to stay in our consumer self for the duration of the meeting and when we are responding to papers and reading reports. The force or influence of this perspective may be stronger if we are closely allied with other consumers, but this is still totally different from 'representation'.

This is not always easy. Paradoxically, those with the most status, the highest qualifications or the most impressive employment record tend to have the most problems with it. If we agree to sit on a committee as a consumer, then we are ethically committed to staying as a consumer. For consumers with greater social capital, this means staying in our least powerful persona for these meetings.

But it's all we can do. Consumer perspective demands this of us. It's a necessity and a gift of power back to all who do not have the privilege of sitting on the committee. Consumer perspective expects us to minimise the times we use terms such as 'they', 'consumers', 'them', 'the people I teach', 'the people I work with', and 'the most vulnerable'. (This 'I' is a personal 'I' and not a professional 'I' except in unusual circumstances. This is an important understanding for consumers working in the mental health sector.)

Consumer perspective expects us to comprehend a whole world of consumers with major differences, but we need to deliver that perspective with grace, and we need to own our own powerlessness.

It's important that people talk from a position of their own experience, because it is the least empowered voice in the sector. (This doesn't necessary mean telling 'I was…' or 'I am…' stories, although it might.) This can be very difficult, because often people's experiences are very raw. For many reasons some consumers decide they can't talk from this ethical place, while others wander in and out of it.

Some consumers who are co-opted onto committees - even those who work regularly on committees - don't understand the fundamentals of consumer perspective. Their contribution to the committee might not be underpinned by a basic consumer 'way of knowing', even though their views are prominent in their contribution. Views, by their nature, are not enough.


Perspective versus views

There is some confusion among consumers about what constitutes 'perspective' and what constitutes 'views'. Perhaps the easiest way to differentiate between them is to see perspective as a singular, a particular way of looking at the world (especially at committee deliberations) through the lens of practical experience as a consumer. Views, on the other hand, are always plural. For every committee-sitting consumer in Australia, there are 100 times as many views.

Consumer perspective dictates a way of seeing (and doing and behaving) that is wholly consumer-present and consumer-responsive. Views, on the other hand, stamp our own personal territory. Our views are important, as are the issues we pursue and the minority groups we come from, but they are not central to all consumers.

Views range politically to all extremes, and they are influenced by our individual psychology, our family of origin, where we went to school, whether we got bullied or praised as little kids - all the stuff psychologists tend to be interested in. Our views are also influenced by factors that have nothing whatsoever to do with our experience of being labelled 'mentally ill'. Very often our views drive us, and this is fine provided we understand where our ideas are coming from.

Understandably, experiences that have hurt us or hurt someone we love will influence our contributions to any committee on which we sit. Problems occur when consumers on committees behave in ways that endorse one of the other influential discourses that already drive psychiatry, rather than in ways that question from a consumer perspective.

The consumer movement is trying very hard to encourage the sector and the community to recognise us as experts in specific areas within the field and as experts in our own discipline rather than as representatives who, by definition, can't represent. And it is even trickier than this: often, unfortunately, consumers are directly discriminated against because of their expertise.


Staying true to your consumer perspective

When we have been selected to do something because of our consumer experience, we are trading two things: our experience of managing a health condition, and our experience of using health services. (And any other expertise we might have to offer, such as common sense.)

This experience is the basis of our expertise, of why we are there. This is what people want to know about. But one of the realities of speaking from a consumer perspective, whether you are working in a service, or sitting on a committee, is that it can feel very powerless, for several reasons.

Consumers of mental health services may have long histories of being discredited. Residual societal attitudes define us as weak, unreliable, untrustworthy or unable to give truthful testimony. It is no wonder we might sometimes feel powerless.

What's more, we often find ourselves in situations full of people with more power than ourselves: doctors, professionals, people who have spent years studying at university. It is not uncommon for us to be working alongside people who have quite literally held legal power over our lives.

Power can be coded in language too. Without meaning to, people in meetings can seem to be talking another language, complete with its own shorthand and vocabulary. (A tip: asking what things mean reminds others of their tendency to use jargon. They will be embarrassed, not you. Remember: often, we have nothing much to lose. Those with least power have least to lose. So it means we can tell the truth. It is refreshing to be around people who can tell the truth.)

When someone is exerting power over you - which happens routinely across all areas of our lives - recognise how it makes you feel, what brings it about. It's useful knowledge. Ask yourself: "Why would that person need to put me in my place?" When someone exercises power over you, it's usually about them.

Be mindful that a person's experience cannot be queried as right or wrong. Because it is deeply felt, personal and individual, it is truthful. Sometimes you may have to remind people of this simple fact.

Ultimately, nothing feels good if it is at the expense of our integrity, our 'truth'. In fact, our truthfulness and our analyses, borne out of our deeply felt personal experience, are our strengths, the source of our power, and the reason we are asked to provide consumer perspective in the first place.

But don't give yourself a hard time if you think you just fell into an "I'm powerful too!"moment . By noticing it rather than denying it, you'll be much better equipped to resist it next time.

It's helpful to mix with other consumers rather than working as a lone ranger. Lone rangers are more likely to be tricked into co-option. It's also good to join up with people who are thinking and theorising about ideas rather than fighting your committee battles on your own. Isolation amplifies everything.

Ask yourself

  1. Am I talking to other consumers about this (if I am allowed to)? Where else is my consumer perspective coming from?
  2. In meetings, do I usually come across as someone with strong views about certain issues or am I regarded as 'easy pickings'? Think about the pros and cons of each position.
  3. What enabled me to make that decision? What knowledge was I calling on? Was it my consumer perspective persona?
  4. At what point do I let an idea go in negotiations within the group?
  5. Do I really have expertise in consumer perspective? If so, do I push it sufficiently? If not, what am I going to do about it?
  6. What does it take for me to feel safe?
  7. Do I need to be liked or to feel powerful more than I need to fight for consumer perspective? What can I do about it?