Although most of the references cited in the bibliography were written in the context of HIV, they have useful information that is transferable for people living with other episodic disabilities.
Risks
You or a family member being stigmatized
- Audet, C.M., McGowan, C.C., Wallston, K.A., Kipp, A.M. (2013). Relationship between HIV stigma and self-isolation among people Llving with HIV in Tennessee. PLoS ONE 8(8), e69564. doi:10.1371/journal.pone.0069564
- Beaulieu, M., Otis, J., Blais, M., Godin, G., Cox, J.J, Côté, J., … & Zunzunegui, M.V. (2012). A model of quality of life of women living with HIV. Journal of HIV/AIDS & Social Services, 11(3), 210-232. DOI: 10.1080/15381501.2012.703559
- Brown, J.L., Vanable, P.A., Naughton, J.D., & Carey, M.P. (2015). Identifying HIV-infected women’s psychosocial stressors: Findings from a qualitative study, Journal of HIV/AIDS & Social Services, 14(2), 188-205, DOI:10.1080/15381501.2013.806235
Being fired
- Audet, C.M., McGowan, C.C., Wallston, K.A., Kipp, A.M. (2013). Relationship between HIV stigma and self-isolation among people Llving with HIV in Tennessee. PLoS ONE 8(8), e69564. doi:10.1371/journal.pone.0069564
- Brown, J.L., Vanable, P.A., Naughton, J.D., & Carey, M.P. (2015). Identifying HIV-infected women’s psychosocial stressors: Findings from a qualitative study, Journal of HIV/AIDS & Social Services, 14(2), 188-205, DOI:10.1080/15381501.2013.806235
- Degroote, S., Vogelaers, D., Koeck, R., Borms, R., De Meulemeester, L., & Vandijck, D. (2014). HIV disclosure in the workplace. Acta Clinica Belgica, 69(3), 191–193. https://doi.org/10.1179/2295333714Y.0000000013
You or a family member being subject to violence
- Wielding, S., & Scott, A. (2017). What women want: social characteristics, gender-based violence and social support preferences in a cohort of women living with HIV. International Journal of STD & AIDS, 28(5), 486–490. https://doi.org/10.1177/0956462416654046
- Adeoye-Agboola, D., Evans, H., Hewson, D., & Pappas, Y. (2016). Factors influencing HIV disclosure among people living with HIV/AIDS in Nigeria: a systematic review using narrative synthesis and meta-analysis. Public Health, 136, 13–28. https://doi.org/10.1016/j.puhe.2016.02.021
Leaving others who may be more vulnerable to stigma to fend for themselves: nothing changes
- DeVries, D.H., Koppen, L., Lopez, A.M., & Foppen, R. (2016). The vicious cycle of stigma and disclosure in “self-management”: A study among the Dutch HIV population. AIDS Education and Prevention, 28(6), 485-498
- Wagener, M., Opstal, S., Miedema, H., Brandjes, D., Dahmen, R., Gorp, E., & Roelofs, P. (2014). Employment-Related Concerns of HIV-Positive People in the Netherlands: Input for a Multidisciplinary Guideline. Journal of Occupational Rehabilitation, 24(4), 790–797. https://doi.org/10.1007/s10926-014-9510-0
Risking being well liked and well respected, open to public scrutiny
- Poindexter, C., Henrickson, M., Fouché, C., Brown, D., & Scott, K. (2013). “They don’t even greet you”: HIV stigma and diagnosis disclosure experienced by HIV-positive African immigrants and refugees in New Zealand. Journal of HIV/AIDS & Social Services, 12(1), 99–120. https://doi.org/10.1080/15381501.2013.765715
- Pride, L. (2013). To tell or not to tell: Negotiating disclosure for people living with HIV on antiretroviral treatment in a South African setting. SAHARA-J: Journal of Social Aspects of HIV/AIDS, 10(S1), 17–27. https://doi.org/10.1080/02664763.2012.755320
Benefits
Receiving much needed disability benefits
- Poindexter, C., & Shippy, R. (2010). HIV diagnosis disclosure: Stigma management and stigma resistance. Journal of Gerontological Social Work, 53(4), 366–381. https://doi.org/10.1080/01634371003715841
Increasing awareness about HIV in the workplace
- Degroote, S., Vogelaers, D., Koeck, R., Borms, R., De Meulemeester, L., & Vandijck, D. (2014). HIV disclosure in the workplace. Acta Clinica Belgica, 69(3), 191–193. https://doi.org/10.1179/2295333714Y.0000000013
Supporting others who have disclosed through your collectivity
- Poindexter, C., & Shippy, R. (2010). HIV diagnosis disclosure: Stigma management and stigma resistance. Journal of Gerontological Social Work, 53(4), 366–381. https://doi.org/10.1080/01634371003715841
Promoting education and better supports for the future
- DeVries, D.H., Koppen, L., Lopez, A.M., & Foppen, R. (2016). The vicious cycle of stigma and disclosure in “self-management”: A study among the Dutch HIV population. AIDS Education and Prevention, 28(6), 485-498
- Poindexter, C., Henrickson, M., Fouché, C., Brown, D., & Scott, K. (2013). “They don’t even greet you”: HIV stigma and diagnosis disclosure experienced by HIV-positive African immigrants and refugees in New Zealand. Journal of HIV/AIDS & Social Services, 12(1), 99–120. https://doi.org/10.1080/15381501.2013.765715
- Poindexter, C., & Shippy, R. (2010). HIV diagnosis disclosure: Stigma management and stigma resistance. Journal of Gerontological Social Work, 53(4), 366–381. https://doi.org/10.1080/01634371003715841