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Gender and Leprosy: Why it Matters


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Prof. Sally Theobald and Ms Laura Dean from COUNTDOWN gave a keynote at the International Federation of Anti-Leprosy Associations meeting on Wednesday, 18th October 2017.

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Gender and Leprosy: Why it Matters

  1. 1. Gender and Leprosy: Why it Matters Prof. Sally Theobald and Ms Laura Dean
  2. 2. Defined as the “socially constructed roles, behaviors, activities, and attributes that a given society considers appropriate for men and women and people of other genders” (WHO 2015) UnderstandingUnderstanding Gender
  3. 3. Gender operates on various levels simultaneously 3 Forms individual identities and values Encompasses interpersonal relationships between individuals Influences how society is organised more broadly in terms of social norms, institutions, structures, resources within all social systems: families and households, communities, economies and states Gender is negotiated by individuals and societies; it changes over time and across contexts Gender interacts with other social stratifiers, such as class, race, education, ethnicity, age, geographic location, (dis)ability, and sexuality
  4. 4. Why is gender important in health systems? 4 • Health systems are not gender neutral – gender is a key social stratifier which affects health system needs, experiences, and outcomes. • As a power relation, gender influences: o Vulnerability to ill-health o Household decision-making and health seeking behavior o Access to and utilization of health services o Design and use of medical products and technology o Nature of the health labor force o Implications of health financing o What data is collected and how it is managed o How health policies are developed and implemented Photo Credit: Carlo Rainone (Standing 1997; Nowatzki & Grant 2011; Vlassoff & Moreno 2002; Sen et al. 2007; George 2008; Percival et al. 2014)
  5. 5. 5 Why is gender important in health systems? Human Resources for Health – Gendered Profile (Newman 2014) Percentage of students by cadre training programme and sex, Kenya 2010 (N = 42 institutions)
  6. 6. 6 India (2005-06) – Percentage of women who do NOT have control over how they spend their earnings Residence Wealth IndexAge Education (Ravindran 2015)
  7. 7. 7 Lessons from Gender Mainstreaming for Leprosy Lesson 1 Tailored Gender Frameworks help make focus on gender explicit Lesson 2 Gender does not operate in isolation: Intersectionality Lesson 3 Gender Power and Participation: who are community representatives and why it matters? Lesson 4 We need to unpack gender and power dynamics at the household level Lesson 5 We need a critical gender lens to data at all times
  8. 8. 8 Lesson 1: Tailored Gender Frameworks
  9. 9. 9 Lesson 1: Tailored Gender Frameworks What constitutes gendered power relations Who has what Access to resources (education, information, skills, income, employment, services, benefits, time, space, social capital etc.) Who does what Division of labour within and beyond the household and everyday practices How are values defined Social norms, ideologies, beliefs and perceptions Who decides Rules and decision-making (both formal and informal) How power is negotiated and changed Individual/ People Critical consciousness, acknowledgement/ lack of acknowledgement, agency/apathy, interests, historical and lived experiences, resistance or violence Structural/ Environment Legal and policy status, institutionalisation within planning and programs, funding, accountability mechanisms
  10. 10. 10 Lesson 2: Gender does not operate in isolation Intersectionality promotes an understanding of human beings as shaped by the interaction of different social locations (e.g., ‘race’/ ethnicity, indigeneity, gender, class, sexuality, geography, age, disability/ability, migration status, religion). These interactions occur within a context of connected system and structures of power (e.g. laws, policies, state governments and other political and economics unions, religious institutions, media). Through such processes, interdependent forms of privilege and oppression shaped by colonialism, imperialism, racism, homophobia, ableism and patriarchy are created. (Hankivsky 2014)
  11. 11. 11 Lesson 2: Gender does not operate in isolation The ‘intersectionality’ wheel adapted for a Liberia context from Simpson 2009.
  12. 12. 12 Lesson 3: Gender, Power and Participation Community Health Volunteers are critical in the delivery of many health interventions, including those targeting leprosy, but we need to consider: How do power dynamics influence CHV selection? How gender influences CHV interactions and performance? How do we support CHVs of differing genders?
  13. 13. 13 Lesson 4: Gender and Power Dynamics in Communities Gender, Stigma and Isolation ‘Coping’: Moses, a Liberian man affected by leprosy’s safe space “The best thing let me do such a thing to myself at least, let everything finish. Because how can human live, the way how y’all lived together first, y’all do everything together, at last because of condition now, you just look that kind of way, they neglect you. That kind of bad feelings can come to you. That how you can just say, but let me just harm myself let everything finish because I don’t want to live I, alone …I live alone.” (Lisa 26-49) “When I am alone, I don’t want to be thinking too much. So when I put my radio on and listen to it. In the night, my radio is on until the battery is low, that the only way… I put my radio on throughout until I sleep. In the morning, do the same thing.” (Gabriel, Over 49)
  14. 14. 14 Lesson 4: Gender and Power Dynamics in Communities Gender, Poverty and Abandonment ‘Abandonment’: In DRC, Neema and her mother were abandoned by their father and husband. “When I was accused as witch craft- in 96, I received heavy beating, excused me please….the switch that hit my nut seed [scrotum] it caused me…I was out of my sex. In 2003, they took out the thing. I just like that. So she too, she can’t be like that. So she went back to her old husband.” (Gabriel, Over 49) “You have no place to go. Then your family who will say come sit down near me here. Now they say “go away from me”, then where are you going to go?” (Emine, Over 49)
  15. 15. 15 Lesson 4: Gender and Power Dynamics in Communities Whatever it takes: consequences of struggling to survive ‘Resilience’: In Liberia, Jon and his wife make and sell brooms for 25 cents (USD) to survive day to day. “I force myself to cook for them to eat. If I don’t do it they either go outside or end up with different things, stealing this and that. So I force myself. Even if I’m crying I force to strain myself, I drag in front the fire.” (Lisa, 26-49) “Sometimes I have the zeal to do the work. I will be shaping my cutlass this and that. But when I get up in the morning sometimes I can feel very weak that I could not do anything. For the whole day I won’t be able to work.’’ (John, 18-25)
  16. 16. 16 Lesson 5: We need to bring a critical gender lens to data ‘Tanya Wood from the International Federation of Anti-Leprosy Associations raised an important concern relating to how data is collected. She provided an example of how leprosy data has been disaggregated demonstrating that in some contexts, more men have leprosy than women and that this has been taken at face value in the figures that are reported by WHO and others. She explained that in reality, women were not showing up in the data because of the multiple challenges they face in accessing care and treatment.’
  17. 17. 17 Concluding Thoughts Photo from Dr. Paluku Sabuni, beneficiaries of the leprosy mission DRC Gender responsive programmes are more likely to be equitable and sustainable
  18. 18. References 18 • Hogan, E. (2017) “An intersectional approach to the psycho-social burden of leprosy: A Liberian case study” Masters dissertation, Liverpool School of Tropical Medicine. WHO. 2015. “What Do We Mean by ‘Sex’ and ‘Gender’?” (May 4, 2015). • Morgan, R., et al., How to do (or not to do)... gender analysis in health systems research. Health Policy Plan, 2016. 31(8): p. 1069-78 • Newman, Constance. 2014. “Time to Address Gender Discrimination and Inequality in the Health Workforce.” Human Resources for Health 12(1): 25. • Nowatzki, Nadine, and Karen R Grant. 2011. “Sex Is Not Enough: The Need for Gender-Based Analysis in Health Research.” Health Care for Women International 32(4): 263–77. • Ravindran, Sundari TK (2015). Health financing mechanisms in India and their implications for women’s access to health care (presentation). In Health Systems Financing – What’s gender got to do with it?. • Standing, Hilary. 1997. “Gender and Equity in Health Sector Reform Programmes: A Review.” Health Policy and Planning 12(1): 1–18. • Simpon, J. (2009). Everyone Belongs: A Toolkit for Applying Intersectionality. [Intersectionality Wheel] Available at: http://www.criaw- (Accessed 8 August 2017) • WHO. 2015. “What Do We Mean by ‘Sex’ and ‘Gender’?” (May 4, 2015).