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4. What are the possibilities and limitations of public data gathering from the perspect­ive of LGBTI+ people and organizations?

The first day of the seminar presented official statistics and public data gathering available in Nordic countries. In the second day, other approaches to data gathering were presented, and the possibilities and limitations of public data gathering were discussed. The first session consisted of two presentations, followed by a panel discussion. The session was chaired by Tuula Juvonen, University lecturer, Tampere University.

4.1. Applying A Human Rights Based Approach to Targeted Surveys – The case of Trans, Labour Market, Wallet

Christina Ahlzén, Consultant - measuring and analysing equality, Medida
Trans, Labour Market, Wallet was a targeted survey for trans people in Sweden and Finland with 1,025 participants over 18 years of age. The survey was designed and carried out in collaboration with the countries' major organizations for trans issues: RFSL (Sweden), SETA (Finland), Transammans (Sweden), Transfeminina (Finland), Regnbågsallians (Finland), and Regnbågsfyren (Åland). 
The presentation focused on how the United Nations’ Human rights-based approach to data gathering was applied in the survey. The set of principles of the human rights-based approach to data are participation, data disaggregation, self-identification, transparency, privacy, and account­ability. 
The principles of disaggregation and self-identification were followed closely. The aim was to build the groups into which statistics are divided based on how individuals identify them­selves, not on perceptions and preconceived categoriza­tions. Respondents were asked about gender identity, gender expression, and how they were perceived by others. Many possible predefined categories were provided, multiple responses were allowed, and respondents could add their own alternatives if the ones that were provided were not sufficient. Based on the responses, a cluster analysis was performed to identify groups that were used in the analysis.
Participation and transparency were followed by having methodological openness and regular discussions with the reference group consisting of participants from the civil society organizations when the survey question­naire was being designed and when the reporting was planned. Before the survey was launched, it was tested by six people, and reactions to questions were observed. Some problems were unexpected; for example, for the test people, perceived gender was not a problematic question, whereas legal gender was for some. Privacy was taken into account by following the GDPR as well as ensuring that indirect identification is not possible from anything that was reported.
Regarding accountability, the problem has been a lack of sufficient resources for dissemination. Despite this, dissemination of the results has continued even after the project funding ended. 

4.2 Reflections on pro­moting epistemic justice in the design of research and data collection concerning gender minorities

Maarit Huuska, Senior Specialist, Gender Diversity & Intersex Centre of Expertise
Research may lead to epistemic injustice. Situations where this may occur include:
  1. Transgender and gender diverse children, trans-, non-binary and intersexed persons might lack the words and concepts to express inner knowledge and embodied know­ledge, or the studies might ignore or not value this information
  2. The language used in the study may feel foreign to minorities own's experience or mis­represent it
  3. Questions might not be essential from the minority’s perspective. 
  4. Members of minorities might not be seen as a legitimate speaker compared to specialists
  5. Minority stress and the need to protect self and others might create obstacles to speak openly about some topics.
  6. The interpretation of the results may overlook essential perspectives because of cis-normativity, or the inter­pretation is too negative and overlooks positive sides
  7. The focus is on vulnerabilities and problems while strengths, resilience or knowledge that would be valuable in everyday life or when taking care of yourself are overlooked
  8. Some studies or interpretations might inflict moral injuries and be a threat to minorities’ wellbeing
An approach that centres epistemic rights involves inclusive and dialogical practices where the client’s knowledge authority is acknowledged and respected. In practice, this means planning study with the target groups, including target group’s own inter­pretation of results (through advisory board/panel) and prioritize those, and preferring qualitative research or empowerment action research or prioritizing expertise by experience knowledge.
When studying transgender and gender diverse children, these considerations are particularly important. Language and questions should be relevant and under­standable for a child. Some examples could be "Do you feel strange being seen as a girl, or do you feel strange being seen as a boy?“, "Would you like  if everyone could just be children or people? (and no one said anyone was a girl or a boy)“ or “Have you ever felt upset because you wish your body was of a different gender than it is now?”. Qualitative and action research could also be good approaches with children, for example story telling together with the children or a drama created by them as a group. Child groups can be found through the peer support groups for children organized by LGBTIQA+ associations and the parent association Trans Children and Youth Families. 
For trans- and non-binaries and inter­sexed seniors, therapeutic qualitative research, that is, telling one's life story, where the unspoken becomes structured and one's own story becomes visible even to oneself is suggested as a research method.  It requires the interviewer to show empathy, compassion, validation of experiences, and to use a dialogical and resource-focused conversational approach.
More research is needed on resilience and strengths, and on post-transition growth. Instead of vulnerability, the focus could also be on special talents, and the position of LHBTIQA+ in some cultures where there is positive instead of negative prejudice. 

4.3. Panel discussion

The panel discussion was chaired by Tuula Juvonen, senior lecturer in gender studies from the Tampere University. The panellists were Miriam Aurora Hammeren Pedersen, advisor from FRI - The Norwegian Organisation for Sexual and Gender Diversity, Thorhildur Elinard Magnusdottir, LGBTQ+ specialist from Reykjavik City, Jaakko Toivonen, administration and finance personnel from Transfeminiinit ry, and Paloma Halén Román, project manager from Transammans, Sweden. 
The panellists first discussed about the relevance of public data gathering and reporting to LGBTI+ people and to the society at large, and about information that is currently missing from society. The panellists regarded all numerical data useful: There should be as much data and results available as there are from cis people. However, qualitative research is also very important, particularly for studying groups that tend to be too small for separate reporting, like elderly LGBTI people, and for studying intersectionality. Qualitative research gives more nuanced view of e.g., experiences of discrimination or possibilities to be open about one’s identity.
Currently, there is very little research or data on for example LGBTI people with disabilities, or LGBTI people from different immigrant groups. One panellist summarized that there is a need for more research on every kind! One specific theme that is often overlooked are the positive effects of transition.
Civil society needs and would use the data in competency training, in sensitivity training, and in advocacy. Data would also be needed to improve the quality of care. 
Accessibility of the results is important. Many public health surveys have open portals that allow users to examine results according to e.g., age, education or gender; it would be important that these also include possibility to examine results according to gender identity or sexual orientation. 
Panellists had in general positive experiences regarding collaboration with public data gatherers, although one panellist mentioned that a lot of lobbying had been needed to include LGBTI+ questions in the survey. Accessibility to the data should be improved, and publication of the results tends to be slow. It would also be important to increase dialogue and participation in the reporting of the results. Reporting from the trans clinics, e.g., waiting times, should also be improved.
Enhancing Nordic collaboration both in how LGBTI+ questions are formulated and in reporting of results would be valuable.
Nordic Council of Ministers I www.norden.org/publications I pub@norden.org