This seminar was delivered on 21st September 2011 by Dr Kenneth Southall from the Institut de recherche Élisabeth-Bruyère, affiliated with University of Ottawa, Canada. The presentation was hosted at Brunel University as part of the Brunel Institute for Bioengineering Seminar Series. A video of the presentation can be viewed at the link below

Brunel Institute for Bioengineering Seminar Series

Southall, K

English

Brunel University Research Archive

1 • the word stigma comes from ancient Greece. Stigma was used to describe the cuts and burns inflicted upon people deemed to be deviant   attributes that are deeply discrediting   a difference, a discredited (or discreditable) attribute, a sign of deviance from “normality”    Goffman, 1963  2 “stigma is the possession of,   or belief that one possesses,  some attribute or characteristic that conveys     a social identity that is devalued in a particular social context”  Crocker, Major, & Steele, 1998  Jones, 1984 3  Occurs when two groups of people exist:   o insiders (have trait) ooutsiders (do not have trait)  •a label attached by and defined by society  ▫ in social settings, stigma may occur when outsiders relate an attribute (held by an insider) to a stereotype  4   individuals who possess stigmatizing traits may direct prejudicial attitudes inwards Major & O'Brien, 2005   In Canada - hearing loss affects approximately 4 in 100 Canadians.   Affects less than 1% of persons under the age of 25 years of age (National Council on the Aging, 1997)  Prevalence increases with age – about 33% of people over 70 years of age most commonly reported chronic disabilities for older adults (Davis,1997)   5  • present day stereotypes about acquired hearing loss date back to ancient times and attitudes held against people who were deaf.   • Aristotle wrote that people who could not hear were speechless, and most likely senseless.   • **the general public is unable to distinguish between manifestations of deafness and manifestations of hearing loss**   • people with hearing loss are sometimes perceived as: ▫ old ▫ cognitively diminished ▫ poor/uninteresting communication partner   Kochkin, 2007   6  maladaptive responses to stigmatization can result in shame, reduced self-esteem, depression  stigmas can result in participation restrictions, and serve as an obstacle to help seeking    40% of people with hearing loss who do not use hearing aids give stigma as one of the 5 main reasons for their decision  • do not admit hearing loss in public – 35% • hearing aids too noticeable – 35% • too embarrassed to wear – 34% • hearing aids make you look disabled – 31% • makes you look old – 31%  Kochkin 2000, 2007  7  To better understand how stigma influences the help-seeking activities of adults who acquire a hearing loss in adulthood. Southall, K., Gagné, J.-P., & Jennings, M. B. (2010). Stigma: A negative and a positive influence on help-seeking for adults with acquired hearing loss. International Journal of Audiology, 49, 804-814.  Qualitative description o Sought to understand participant experiences and describe in everyday language  Participants: o hearing health advocates & volunteers (n=11) o Age range 53 to 76; 8F 3M; majority profound HL; 5 CI users  Interview about help-seeking and stigmas   Thematic analyses – to identify recurring themes arising in interviews 8 • Build-up of stress:  ofollowing onset of hearing loss • Critical juncture 1:  onumerous losses in valued activities lead to intensification of help-seeking • Critical juncture 2:  owhen positive energy prompts advocacy work and new learning opportunities • Build-up of stress:  ofollowing onset of hearing loss • Critical juncture 1:  onumerous losses in valued activities lead to intensification of help-seeking • Critical juncture 2:  owhen positive energy prompts advocacy work and new learning opportunities “I had a grandmother who was from Vienna, who said, “I will be in my grave before I let my granddaughter wear hearing aids.” 9 • Build-up of stress:  ofollowing onset of hearing loss • Critical juncture 1:  onumerous losses in valued activities lead to intensification of help-seeking • Critical juncture 2:  owhen positive energy prompts advocacy work and new learning opportunities • Build-up of stress:  ofollowing onset of hearing loss • Critical juncture 1:  onumerous losses in valued activities lead to intensification of help-seeking • Critical juncture 2:  owhen positive energy prompts advocacy work and new learning opportunities “It's like a triangulation of events happened in my life all at the same time. The stapedectomy didn't work. My mom who was living with me passed away and I lost my job and all within a three-month period. Boom boom boom. And I went into a deep depression…And I reached out and got some psychological counselling.” 10 • Build-up of stress:  ofollowing onset of hearing loss • Critical juncture 1:  onumerous losses in valued activities lead to intensification of help-seeking • Critical juncture 2:  owhen positive energy prompts advocacy work and new learning opportunities • Build-up of stress:  ofollowing onset of hearing loss • Critical juncture 1:  onumerous losses in valued activities lead to intensification of help-seeking • Critical juncture 2:  owhen positive energy prompts advocacy work and new learning opportunities “Every time someone (new) comes, … All the emotions that I went through, …is mirrored back to me. It almost makes what I went through worthwhile, because now there is a reason why it happened to me.  Because now I'm having an impact on someone else in a positive way.  It feels wonderful.”” 11 • To identify the factors that lead individuals to conceal or disclose their hearing loss in the workplace, including o facilitators versus obstacles to disclosure o factors associated with these behaviours Southall, K., Jennings, M. B. & Gagné, J.-P. Factors that influence disclosure of hearing loss in the workplace. International Journal of Audiology EPub - Aug 3, 1-9 (2011). 12  Participants: ◦ Individuals who had an adult onset hearing loss, and were gainfully employed participated (n=12)  Data collection: ◦ Audio-recorded semi-structured interviews ◦ A photo elicitation interview technique was employed to generate the most relevant data (disclosure patterns in 5 typically occurring situations)   Content analyses were used to extract pertinent information  • The importance of the situation • Sense of control • Community affiliation • Burden of communication • Coexisting issues related to hearing loss   13 • The importance of the situation o Perceived responsibility in the situation  o Costs versus benefits of disclosing hearing loss in the situation • Sense of control o Predictability of work related tasks o Balance of power between the worker with hearing loss and the co-worker  • Community affiliation o Community affiliation jeopardized because hearing loss not considered „normal‟ o Difficult to understand “partial” hearing loss  “But it is hard, it is hard on the psyche […] Most of these teleconferences I organize, so I‟m not only a participant, I‟m the chairperson. So if I don‟t understand, then that‟s even worse.” • The importance of the situation o Perceived responsibility in the situation  o Costs versus benefits of disclosing hearing loss in the situation • Sense of control o Predictability of work related tasks o Balance of power between the worker with hearing loss and the co-worker  • Community affiliation o Community affiliation jeopardized because hearing loss not considered „normal‟ o Difficult to understand “partial” hearing loss  “Self preservation kind of kicks in. I want this job. I need this job. And I want that salary. I'll handle him or her, the boss. And once I get into the job, then I'll cross that line and explain. It‟s not a good idea, but I would do it from time to time if that situation warranted it.” 14 • The importance of the situation o Perceived responsibility in the situation  o Costs versus benefits of disclosing hearing loss in the situation • Sense of control o Predictability of work related tasks o Balance of power between the worker with hearing loss and the co-worker  • Community affiliation o Community affiliation jeopardized because hearing loss not considered „normal‟ o Difficult to understand “partial” hearing loss  ”First of all, I equip myself before I pick up the phone to call a company. I've done my homework on a company. So I tend to be more in control of the conversation….”  • The importance of the situation o Perceived responsibility in the situation  o Costs versus benefits of disclosing hearing loss in the situation • Sense of control o Predictability of work related tasks o Balance of power between the worker with hearing loss and the co-worker  • Community affiliation o Community affiliation jeopardized because hearing loss not considered „normal‟ o Difficult to understand “partial” hearing loss  “If somebody takes me to see a problem…,, and mouths the words fix it. … I would say you know, "We‟re going to fix that for free!" and you‟d see a smile come on their face, …. (or) "We‟re going to have to look at that…" (laughs). Which means I need to get out of here and do some thinking about it.” 15 • The importance of the situation o Perceived responsibility in the situation  o Costs versus benefits of disclosing hearing loss in the situation • Sense of control o Predictability of work related tasks o Balance of power between the worker with hearing loss and the co-worker  • Community affiliation o Community affiliation jeopardized because hearing loss not considered „normal‟ o Difficult to understand “partial” hearing loss  “It‟s sort of like, you know, waving a flag in their face that you have a problem. You do want to be treated normally. You don‟t want to be treated differently.” • The importance of the situation o Perceived responsibility in the situation  o Costs versus benefits of disclosing hearing loss in the situation • Sense of control o Predictability of work related tasks o Balance of power between the worker with hearing loss and the co-worker  • Community affiliation o Community affiliation jeopardized because hearing loss not considered „normal‟ o Difficult to understand “partial” hearing loss  "[There is] the land of the hearing, and the land of the non-hearing. What I call no-man's-land [is] in between. I feel like I am trapped there... "in" the world, but not "of" it.”  16 • Burden of communication o Perception that co-workers forget about hearing loss o Perception that hearing loss is disruptive to natural flow of interactions  • Coexisting issues related to hearing loss  o Issues that result in fluctuating levels of hearing ability o Adaptive technologies and other accommodations   • Burden of communication o Perception that co-workers forget about hearing loss o Perception that hearing loss is disruptive to natural flow of interactions  • Coexisting issues related to hearing loss  o Issues that result in fluctuating levels of hearing ability o Adaptive technologies and other accommodations   “they called a big meeting, and they have absolutely no accommodation for me. How could you forget?”  17 • Burden of communication o Perception that co-workers forget about hearing loss o Perception that hearing loss is disruptive to natural flow of interactions  • Coexisting issues related to hearing loss  o Issues that result in fluctuating levels of hearing ability o Adaptive technologies and other accommodations   “If there‟s someone that doesn‟t know about it, and it‟s come to a point where it‟s probably more than the average person asking, "What? Can you repeat that?" then I disclose it. • Burden of communication o Perception that co-workers forget about hearing loss o Perception that hearing loss is disruptive to natural flow of interactions  • Coexisting issues related to hearing loss  o Issues that result in fluctuating levels of hearing ability o Adaptive technologies and other accommodations   “I just wish I had a thermometer on my head that showed people what it was like today. …Hearing loss is a hidden disability and to have tinnitus is sort of like a double whammy..” 18 • Burden of communication o Perception that co-workers forget about hearing loss o Perception that hearing loss is disruptive to natural flow of interactions  • Coexisting issues related to hearing loss  o Issues that result in fluctuating levels of hearing ability o Adaptive technologies and other accommodations   “if you see someone in a wheelchair you won't ask them to go up stairs. I want people to see my hearing aid and be clued in from the beginning.” •  Most respondents assessed if they could manage the situation without disclosing. o If „yes‟, how? o If „no‟, costs and benefits of disclosing?  • Disclosure influenced by characteristics of the workplace:  o Presence of other workers who also have hearing loss o Organizational support - size of employer, nature of work.  • Disclosure is also influenced by public support –  o accessibility legislation  o extent to which guidelines are put into practice   19  People with hearing loss may also be impacted by group-associated stigmas related to age, gender, race, socio-economic status or geographic location.   Each individual is different their experience and response to stigma and discrimination (i.e., vulnerability versus resilience)   It is expected that individual differences will reflect broader social conditions   most older adults multiple conditions (HL, VL, UI and MI)  Stigmas impede upon: ◦  recognition, identification of conditions  Stigmas serve as an obstacle to: ◦  help-seeking, service provision, and adherence.   Older adults are challenged not only by health related stigma but also by group-associated prejudice and discrimination  The role of multiple sources of stigma and discrimination in the adoption and use of ATDs merits investigation   20  1 Crocker, J., Major, B. & Steele, C. in The handbook of social psychology, Vol 2 (4th ed )   eds D.T. Gilbert, S.T. Fiske, & G. Lindzey)  504-553 (McGraw-Hill, 1998). 2 Davis, A. in Scott Brown's Otolaryngology   (ed A. Kerr)  (Butterworth-Heineman, 1997). 3 Goffman, E. Stigma: Notes on the management of spoiled identity.  (Prentice Hall, 1963). 4 Jones, E. E., Farina, A., Hastorf, A. H., Miller, D. T. & Scott, R. A. Social stigma: the psychology of marked relationships.  (Freeman, 1984). 5 Kochkin, S. Marke Trak VII: obstacles to adult non-user adoption of hearing aids. Hearing Journal 60, 24-51 (2007). 6 Major, B. & O'Brien, L. T. The social psychology of stigma. Annu Rev Psychol 56, 393-421 (2005). 7 National Council on the Aging. The consequences of untreated hearing loss in older persons.  (National Council on the Aging, 1999). 8 Southall, K., Gagné, J.-P. & Jennings, M. B. Stigma: A negative and a positive influence on help-seeking for adults with acquired hearing loss. International Journal of Audiology 49, 804-814 (2010). 9 Southall, K., Jennings, M. B. & Gagné, J.-P. Factors that influence disclosure of hearing loss in the workplace. International Journal of Audiology EPub - Aug 3, 1-9 (2011).       Jean-Pierre Gagné (U Montréal)  Mary-Beth Jennings (U Western Ontario)  Tony Leroux (U Montréal)  Natacha Trudeau (U Montreal)  Participants who agreed to share their experiences with me. 21 Kenneth Southall, PhD Early Researcher / New Career Scientist Institut de recherche Élisabeth-Bruyère Research Institute Affiliated with University of Ottawa 60 Cambridge Street North Ottawa ON, Canada (K1R 7A5) Tel:  613-562-6262 ext. 2244 Email: ksouthall@bruyere.org  

'In the world, but not of it': Exploring the impacts of hearing loss stigma

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