Funder by the Department of Human Services Auspiced by Our Community

EBONY AND GEORGINA*: THE STORY OF TWO CONSUMERS ON A COMMITTEE


EBONY

Background

Ebony arrived late on the consumer scene. She came with a significant skill base that she had developed sitting on boards and committees in the private sector. Although only recently involved with other people diagnosed with 'mental illness' she had much to contribute from her successful business career.

Mission

Ebony is devoted to people who have been silenced because of the bad feelings associated with a particular diagnosis. She is determined to improve and increase the medical services available in both the public and private sectors. Her mission is to find ways to promote this diagnosis in the community and rebrand it so the community will understand it better and stop stigmatising people. She is driven to prove this diagnosis as a genuine mental illness.

Go-getter

Ebony has a can-do personality. She has well-developed skills in working with politicians and winning them over. She highly values these skills. It enables her to get things achieved without unnecessary bureaucratic delays. She knows she can match it with the most senior politicians, academics and some clinicians.

Consumer body of knowledge

She doesn't think much of 'talk fests' and really thinks that talking is only valuable if it leads to a decisions and action. If asked, Ebony would not know anything about the history of the consumer movement, consumer perspective, consumer ethics and democracy. She doesn't see the need to waste time on something that isn't very helpful.

Background to the Committee

Ebony has been very active in this area over the past eight years. She is dedicated and driven, having recreated herself as the go-to consumer. Ebony is determined to get this group of patients into services in a respectful way. Her main interest is in creating services that people can use whether they have money or not. She knows she has a great deal of social capital and the skills to make ponderous political and bureaucratic wheels turn.


GEORGINA

Background

Georgina is a veteran in the consumer movement. She has been making herself unpopular by fighting for the human rights of one of the most maligned groups of consumers (those bearing the same diagnosis as the people Ebony is fighting for) for more than 25 years.

Mission

This diagnosis was certain to bring discredit even for Georgina. But against the tide of opinion within the sector she kept on fighting. Consumers with this diagnosis told their stories to her. They trusted no one else. She sometimes felt burdened by their pain. She did her own research and found patterns in the way people with this diagnosis were being treated. Her knowledge about the consumer experience of life with this label was second to none. She was determined that the medical world would hear about what they were doing to harm and marginalise people with this diagnosis. Better, non-oppressive healing was her mission.

Orator

Georgina's greatest contribution was as an experienced, dynamic speaker. Over 20 years she gave major speeches around Australia demanding significant changes to the care that was missing for this group of people and the pain and harm being perpetrated by systems set up to 'care for' them. She had given major addresses overseas.

Reflective

Georgina's manner was reflective and inquisitive. Sometimes she changed her mind between the start of the meeting and the end. She had a keen intellect and was known to be deliberate carefully. She was very conscious that she had changed her position on some crucial issues over time and she desperately wanted to share these new ideas with Ebony.

Consumer body of knowledge

Georgina was passionate about what was happening to people with this label. In her early days she wrote about the problems caused by lack of services but she was increasingly troubled about the capacity of the medical industry to provide experiences that would be healing. She leant heavily on her long-standing and proud heritage as part of a consumer movement that guides people with mental illness to make decisions that are consumer-ethical from a consumer discourse.


Ebony and Georgina: the story of a committee

Ebony's Experience of the Committee

Appointments to the committee

After the committee was announced Ebony was elated. At last! She was personally satisfied - a lot of hard slog had gone on behind the scenes. She knew that she would be asked to sit on this committee because she had been so active. Even though she didn't have the right diagnosis she thought this was less important than the many skills she could bring to the discussion. She knew she could use her social capital. Immediately she started lobbying for Georgina to also be appointed. She was frustrated that a few people were using Georgina's diagnosis to exclude her. Ebony was cross but not prepared to tarnish her own reputation to save Georgina's.

The Committee as a Challenge

Ebony faced the committee as a challenge. She didn't have time for navel gazing. She worked out exactly what she wanted to achieve and how she could achieve it. She found money to provide the 'evidence' she believed she needed to support her argument. It didn't matter where that money came from. She found volunteers and reconstructed them to be 'neutral' to help her produce a database.

Strategies

Strategically she did well. She cleverly steered clear of lobbying for anything that would evoke the ire of any of the clinical groups represented on the committee. She avoided their defensiveness and didn't challenge territory. This fitted with her plan. She aimed at community intervention. This was a good move and didn't involve directly challenging anything medical.

The Committee

Ebony had an advantage over Georgina in several ways:

  1. She'd worked with many of the committee members on other projects over the previous few years;
  2. She stuck to community intervention rather than clinical intervention;
  3. Once she had won her target goal she had the right temperament to ignore the challenging attitudes of other committee members;
  4. She fitted in with the committee in terms of social class and social capital;
  5. She didn't have any sort of obvious social justice agenda;
  6. She was interested in individuals and not in systems;
  7. She liked sitting on these sorts of committees;
  8. She was content to lobby clinical committee members out of session;
  9. She didn't worry about consumer perspective or any moral requirement to speak from a consumer discourse; and
  10. She was spot-on strategically. No energy was wasted on anything that wouldn't pay back.
Georgina's Experience of the Committee

This committee was devastating for Georgina. The disrespect was palpable. For Georgina, the poor processes of the committee made her continued presence tenuous. The members of this committee did not know how to listen to each other let alone her, she decided.

Chairing

Unfortunately the committee was chaired unsympathetically. Every time Georgina said anything she felt she was dismissed without adequate consideration of her point of view. She was unable to be the expert they wanted because she was ethically committed to being the expert consumers needed. The chair couldn't hear her because the consumer discourse was out of her hearing range.

The working of the committee

Georgina was frustrated by the tone that was set at the committee. She experienced several of the clinicians as pompous. Only two members had any time at all for Georgina's substantial body of work. It was humiliating for Georgina to have done so much and to constantly hear it negated or minimised. Despite evidence to the contrary the clinicians on the committee could not get past the idea that they were the expert (by definition) and she was not (also by definition). She was frustrated.

Process

For Georgina there were deficiencies in process. From a consumer perspective the committee should have been briefed about ethical inclusion of consumer expertise and the chair should have policed it. The process of people going away and drafting content and then recommendations was flawed. Georgina, an experienced drafter, continually shaped recommendations that were scuttled.

Recognition of expertise

Like Ebony, Georgina developed one major goal and this was consumer leadership in the education of clinicians around this diagnosis. It was much more contentious ground; however Georgina believed strongly that recognition of her empirical expertise (and Masters qualification) should have demanded respect.

Conclusion for Georgina

The end result was that nobody learnt anything from Georgina's vast knowledge. There was not one recommendation that reflected Georgina's work. The process left Georgina furious, lonely and even more disillusioned than she had been when it all started.


The developing gap between Ebony and Georgina

Style

Ebony intuitively moved towards power and influence and joined forces with clinicians often as she was hell bent on getting out of the process the one recommendation that she wanted. This was a good political strategy but Georgina was wary of Ebony moving away from consumer perspective that Georgina considered fundamental.

Ebony was driven and fought or beguiled everyone to achieve her objective, which was sincere and well intentioned. Her determination, uncluttered by the moral and ethical considerations of consumer principles and perspective, still meant lots of work but work with a very different flavour from Georgina's.

For her part, Georgina was sad because of the increasing distance between the two consumers and the assumed superior knowledge creeping into Ebony's practice. Ebony, reading Georgina's growing troubles, tried to 'help' but it wasn't appreciated. Georgina, on the other hand, experienced it, through the eyes of frustration, as disrespectful of her long career in this area. This was a pity. Ebony would not have known that her attitude towards 'winning' was putting Georgina in a difficult quandary.

Knowledge

Ebony did not know about, nor did she prioritise, the consumer body of knowledge or the important debates happening around 'consumer perspective', 'consumer view', empowerment, 'consultation', 'representation' or anything coming from the thinking arm of the consumer movement. Unlike Georgina, Ebony didn't have a problem with the 'medical model' and the medical discourse. These were all fundamental to Georgina. A win without a consumer movement behind you was not a win.

Politics

Ebony believed that Georgina wasn't political enough and was setting herself up for trouble by not being politically savvy. She was progressively frustrated by Georgina's lack of pragmatic skills. Georgina was angry and upset that the Ebony wasn't listening to her political advice gained over two decades. When Ebony talked about politics she understood it as party politics, power through using whatever means one had available to score points. When Georgina talked politics she was talking about internal power elites within mental health.


Discussion Items:

  1. Do you think compulsory consumer perspective education would have made any difference to the attitudes of the people sitting on this committee? If not, what can we do?
  2. What could Ebony and Georgina have done to help each other?
  3. Some consumer organisations recommend that consumers should be co-opted on to committees in self-chosen pairs to increase their capacity to put forward cogent arguments that they know will be backed up by the other consumer and enable strategising between meetings. What do you think?
  4. At what point should we jump off a committee and go viral?
  5. How can the consumer movement support people sitting on committees, especially if the committee is a potentially volatile committee?
  6. Are there hidden rules for national and state committee-sitting? Are they pushing us away from our core values as consumers?
  7. When we are seen by a committee as our 'illness', what can we do about it? Does the chair have a role?
  8. What could Georgina have done that was consumer-ethical and consumer-moral but still enable her to complete the run of this committee without a bad impact on her health?
  9. Ebony is a good political operator and Georgina has skills and 20 years experiences of the consumer movement, including the important debates that are taking place amongst a broad range of consumers. How could they have got through this process and found more common ground?
  10. Was this committee a win or a loss for consumers?

* All names are pseudonyms