Participation, Empowerment and Effectiveness: The Tall Girls Inc. Experience.

From the late 1950s, organically healthy tall young girls were treated with synthetic oestrogens to stunt their growth:

at first, with diethylstilboestrol (DES) and then from the mid-1970s with ethinyl estradiol (EE). The largest first study to be reported on in the medical literature, in 1965, was conducted by a Melbourne paediatrician, Dr. Norman Wettenhall. This treatment was given, it was argued, in order to avoid psychological problems these girls might experience from being perceived to be too tall. Many of the women who had been treated as young girls have now reported a wide range of negative health experiences. A National Health & Medical Research Council (NHMRC)-funded study is currently investigating the bio-psycho-social outcomes of this treatment.

Tall Girls Inc. is a small self-help consumer health group representing women who, as tall girls, were treated with synthetic oestrogens to stunt their growth. A NHMRC-funded study is now researching the health outcomes of this treatment.

This article discusses three aspects of the group’s activities: participation in testimony and in relationships and readiness to participate.

In mid-1997, some women read a newspaper article about an experiment carried out in Australia thirty and more years in the past where young girls, who were tall for their age, were treated with synthetic female hormones to stunt their growth. Two shocking thoughts immediately sprang into their minds. “I was one of those girls!” and “There are others like me in the world. I am not alone in this experience.”

When those women met several weeks later, they also discovered that most had had health problems from that time. Though only a handful of women, none, bar one, had escaped some sort of reproductive system disorder, from infertility to endometriosis to ovarian cysts to miscarriages. And there was more besides. Stories of depression, fibromyalgia, weight problems and body image issues.

Participation in Testimony: The presentation of testimony

No consumer health group is ever formed in positive circumstances. Always some negative medical experience (and its outcomes) is the point of coalescence for its formation. So it was with Tall Girls Inc. And collecting this negative corroborative testimony can potentially overwhelm those who take on the issues that are raised. But, this provides both the major arena for participation and the major means by which to participate: the presentation of testimony.

From the first, the women engaged in telling their stories: to each other by phone; to the media and in subsequent print and electronic publicity; to government and the medical profession through representations and advocacy; to Tall Girl respondents by means of an information package containing medical papers and press clippings; and to the world at large by sending these same packages to anyone they could think of or find on the Net. The focus of the women’s action was the mantra: What had happened to them? Why had it happened? What were the long-term medical outcomes of what had happened?

Sounds simple enough except that it involved a complete disruption to ordinary life as the women responded to press and radio interviews and were the subjects of a television documentary. The story had many threads the media were keen to follow. There was the issue of medical experimentation on uninformed children; there was the question of the ethics of exposing healthy young girls to such powerful substances for such a nowadays, seemingly, trifling reason; there was the worrying testimonies of these women’s health ever since.

The intense early period also involved hundreds of hours of taking in Tall Girl testimony by phone as women contacted the group. This had two positive outcomes. First, by sharing so many narratives from other Tall Girls and by recounting their own so often to the media, the women located their own experience within a wider context. This engendered not only a sense of responsibility to the group narrative rather than simply one’s own, but also made one’s own negative experience seem less central. Secondly, by the time the women began to engage in representations to government and the medical profession, their ownership of their narrative was so complete that they could confidently assert their status as “the primary stakeholders” in any research that was to be undertaken.

What was the key attitude that supported all this effort? At the end of that initial meeting, the women agreed to submit a letter to the editor in which they called for research into their experience. There was no sense of “victim” among them. Outrage that this had happened, yes: and a desire for more knowledge; but no dwelling on negativity.

Unadorned, direct testimony has an undeniable authenticity and appeal. The voices of these women in print, on air and onscreen have been compelling. Particularly so as they have recounted details of their health histories and the psychological aftermath of having had this treatment. This participation in making their narrative public was not only instrumental in forming the group’s identity and in its ultimately achieving a research study, but also has been a positive and liberating experience for the women involved, none of whom had done anything like this before.

The women also did a literature search on the Net and discovered that this treatment was still being carried out today (primarily in northern Europe). There was a clear realization that this should not be taking place, especially as no one knew what the long-term health outcomes of it were. The science had just not been done. So now there was also the need for this knowledge to end this unnecessary treatment. For many of the women actively participating, this provided even greater motivation for their efforts. The focus had moved from the personal to a bigger field.

And when Tall Girls became aware of their place in the endocrine disruption issue (see: Our Stolen Future 1997) it was clear to them that their story had relevance at global and species levels also.

But the media treated them very well and the women quickly learned how to maintain their end of the communication. Their confidence was the result of the research they had done (there was no evidence of long-term negative outcomes of Tall Girl treatment because no one had looked to see: absence of evidence was not evidence of absence); and their awareness that this science mattered, not only for them, but for others also.

The question of justice for the women and their suffering did arise. Early on the women recognized they could not take on every issue equally. Justice in the courts was an option available to an individual and not a group. In any case, any such action would have difficulty succeeding without convincing scientific evidence and there was, as yet, none.

Moreover, compensatory justice was not a motivation held equally strongly within the group. And for some, as the story of the group progressed, its relevance has altered. The potential value of the knowledge that would be contributed by the research the women had initiated and in which they were participating, has assumed more on-going meaning than legal action.

The power of testimony, then, relates to how you participate in your narrative: with what attitude? For what purpose? By which means? Tall Girls participated with a positive attitude, for the benefit of the group and beyond, by employing the channels available in a democratic society to present their case.

Participation in Relationships

The second area of participation is the one of relationships within the group and between the group and others. Every group that engages in action has differentiated roles that members take on. Some play a more central role, others a more peripheral one. Some are prepared for the glare of publicity, others choose to avoid that. Some roles may at times appear to be more critical than others, and in particular contexts they are.

What matters, however, is the understanding that each individual’s contribution matters. All are necessary; none is sufficient. This creates the basis for democratic lateral relationships within the group. These relationships cannot be asserted into being. They must be achieved in the concrete practices in which members participate.

Operating more like an editorial committee than as a formal organization, Tall Girls Inc. has nominal roles ascribed to individuals, necessary for the paper flow to maintain the group’s existence. But relationships within the group are lateral rather than vertical. Any Tall Girl who has been available to participate in interviews and representations, to take on the task of information flow, to collate incoming data, has been eagerly incorporated into the task. Most work is done by a core handful. But many more have participated at peak activity moments. Especially when there has been the pressure of immediacy, the women have demonstrated a capacity to “do their bit” that has belied their anxieties and lack of expertise.

The goodwill within the group that this illustrates can only arise when individuals feel personally valued in a common cause; when they know their efforts really do count. It creates a sense of mutual reliance in the group that sustains the efforts that need to be made to achieve the group’s goals.

A key means of maintaining lateral relationships has been communicating in real time as far as practicable. Apart from phone, fax and email, with the diffuse membership Tall Girls Inc. has nationally, the newsletter has been a central means of dialogue with members. Each issue has had three foci: an update of what has been happening; articles, some especially written, some reprinted, on issues related to hormone exposure (e.g.: endometriosis, endocrine disruption, culture and the manipulation of normality); and a “My Story” section for Tall Girl testimony.

A primary decision by the group was to make information available to anyone who asked or might be interested. While this may seem wasteful and to some extent misdirected for a group with few financial resources at hand, funnily enough, it has been very effective. When a group manages to generate traffic over a period of time, after a while there is a synergistic return for that effort. As an example: Tall Girls Inc. has contacted whoever they could think of overseas to ask about this treatment or to inform them about what the group was discovering. Fax and email have been the basic means, supplemented by snail mail. Interest in what was going on in Australia, in turn, was of great benefit when the Tall Girl research proposal was sent for overseas peer review.

And Tall Girls Inc. has two representatives on the Reference Committee that is overseeing the research project.

Communications and relationships are fundamentally intertwined. Open, transparent and inclusive processes foster lateral democratic relationships and allow for role differentiation without the strictures that arise when vertical relationships dominate. So; periods of intense activity have been supported by members who have responded as there has been need.

Participation in Readiness to Contribute

The final area to consider is readiness to participate.

In taking on what appears, at first, to be an insurmountable task, small consumer health groups cannot but help feel daunted. Resources and personnel are few, information is fragmented, and allies are absent. Insecurity is readily fed by anxieties about lack of things, lack of knowledge, inopportune timing, all of which can stem the flow of the effort, enthusiasm and work of the group.

With regard to resources, you simply start with what you have. Tall Girls Inc. began using basic means such as phone and snail mail and quickly acquired an answering machine, six months later a fax and then a year later, internet. Until this had settled into place, individual members kept up the information flow with whatever technology they had access to, personally and through friends. A basic newsletter, without sophisticated production values, was easily created and a friend of the group built and maintains our website.

People to help the cause along the way, members to join the group, interested professionals, most often find you rather than you finding them, when the information traffic goes beyond a critical mass. Because this can be generated and maintained relatively easily with not many people and today’s communication technology, this means that small groups can have faster and bigger impact than ever before.

No one in Tall Girls Inc. could have imagined the details of the past four years’ journey. Because so much communication traffic has taken place, Tall Girls Inc. is now in contact with a world-wide network of groups and organizations, as well as individuals, something that was unimaginable in the early days of feeling embattled and unacknowledged.

In other words, the constraints of resources and personnel for a small group are not limits to participation. Rather they are the bases from which those resources and personnel grow in response to the group’s participation in its testimony, the way it engages in telling its story and the relationships that encourage a diversity of authentic voices to be heard.

Readiness in terms of information is a more subtle hindrance to a small group. Without the support of many, if any, professionals, small consumer health groups can feel that their knowledge is not adequate to the task of arguing their case. Not all the necessary information is available to them and it is difficult at times to make sense of it as lay persons.

However, the work of a small self-help consumer health group is not to take the place of the professionals who have the means to satisfy their needs. It is to awaken those professionals sufficiently to their needs, so that those people will do that job. Advocacy needs to be targeted towards that specific goal.

There is no ideal time for this to begin. As soon as the issue that is the raison d’être for the group comes into being, the advocacy begins.

Even without all the information, the picture of the issue emerges from the fragmented pieces much as you can tell the content and composition of a jigsaw long before every piece is in place. As long as what is presented publicly accurately reflects the state of knowledge that you have at the moment; and that wild and inaccurate claims are avoided; there is no problem with a small group not being able to match the professionals, point for point. As long as the group has confidence in its testimony and asserts the ownership of this as experientially undeniable, then laypersons need not feel overawed by the professionals. After all, it is up to the professionals to make themselves intelligible to laypersons, not up to laypersons to sound like professionals.

By being alert to the opportunities generated by information traffic, situations arise to which the group can makes responses thereby generating more traffic. These moments are unpredictable: a reporter who wants to do a story; a government report that is issued on a health related area (e.g. privacy and access to health information of individuals); an overseas press item (e.g. early puberty and hormones).

Fundamentally, it all comes down to participation. The more activity in which you participate the more possibilities come into being. And the more possibilities there are, the more meaningful and effective is that participation.

Ed Wolf is a committee member of Tall Girls Inc. and partner of Janet Cregan-Wood who chairs the group.

This article was originally published in the journal of Health Issues Centre, December 2001.