This week’s article looks at political disability disclosure . This study used the constructivist grounded theory approach to examine the reasons for political disclosure, as well as facilitators and barriers to that disclosure. Listen in to hear Lara present her article and discuss with her co-hosts.
KeyLIME Session 255
Jain, N. Political disclosure: resisting ableism in medical education Disability & Society (2019)
Lara Varpio (@LaraVarpio)
- Disclosure of a disability is part of an individual’s agentic identity work. It is a way for an individual to become the author of their own identity, an identity that evolves over time.
- Interestingly, research into the disclosure of disability is dominated by what is called logical disclosure—this is a declaration of disability in order to secure access and accommodations. There is also mention of disclosure for personal or self-image reasons.
- But, there is another kind of disclosure, political disclosure. This kind of disclosure involves storytelling and education and advocacy aimed at destigmatizing disability. It is about changing social perceptions about disability
- Changing social perceptions about disability is important because there are ways of knowing the world that come from experiences of living with a disability, and those insights can uniquely shape medical practices. This way of knowing that disability provides has been called disability epistemologies.
- These ways of knowing the world can change social perceptions about disability. By having learners with disabilities in medical education, peers may develop understanding of and appreciation for disability completency through equal status relationships
- But we can only reap those benefits, if we destigmatize disability.
- This paper explores the ways political disclosure is enacted by medical students to deepen our understanding of inclusion and the complexity of disability experiences. It studies political disability disclosure including the reasons for it, as well as the facilitators and barriers to that disclosure.
Key Points on the Methods
- This study used the constructivist grounded theory approach, using data collection from individual semi-structured interviews. There were 2 populations of individuals interviewed: students and school officials
- Institutional leaders of 4 schools were invited to participate. With respondents, and with some help from snowball sampling, the researcher was able to interview 19 students who self-identified as having a disability and also interviewed 26 school officials.
- The author explains that constant comparison was used, listening to interview recordings, reading and re-reading transcripts. Then doing line-by line open coding. The author then identified focused codes with grab and fit, and then compared similarly coded data between and within interviews.
- The author describes 5 forms of political disclosure:
- Open disclosure which is when the student disclosed their disability despite not needing to achieve a specific goal, not needing to get something from the other person. They engage in this open disclosure to counter stigma and encourage others to be open about their disability
- They could be standing up against stigma, disclosing to interrupt the perpetuation of negative understandings of disability
- They could disclose to change policies and practices that disproportionately affected disabled students
- Disclosure can also be about creating community
- Students could disclose their disability status to add content to the curriculum especially when there was a tendency to discuss disability in a medicalized, disease focused way
- What made individuals disclose their disabilities?
- For some, it was about creating a sense of belonging and shared experience. It was a way of building networks of peers who also had disabilities, and a way of living authentically.
- Another was about how the learners’ personal experiences connected with a collective one. This has to do with the learners recognizing that in disclosing, they were making a space for learners who would come after them to be safe in disclosing.
- Participants also acknowledge that some of their personal attributes might make it easier for them to disclose – things like being extroverted, being politically active, these made discloser easier for some
- The last facilitator identified was the learner’s place in the hierarchy of medical education. The authors described how, as they moved along the continuum to 4th year med student and into residency, political disclosure was something they were more comfortable doing
- In terms of deterrents, the authors state that perhaps the strongest deterrent to political disclosure is that the students are very well aware of stigma and the associated risks involved in disclosing. They feared that that stigma would mean that they would not be recognized as capable clinicians, that they could lose peer support, they were risking future job opportunities
- They also lamented a lack of structural support. School officials were reported as supporting logistical disclosure so that learners with disabilities could have the support they needed, but they wanted the temper learners’ desires to engage in political disclosure because they wanted to protect students from possible blowback to their careers. The officials described feeling obliged to educate students on the uncertain outcome of disclosure
- “acts of political disclosure go beyond daring to exist in the environment and request accommodations; they take control of a narrative and enroll others to reconstruct collective understandings.”
- Students take power and exert their agency with political disclosure and I hope that we as the medical education community can help with that.
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