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Parents with substance use disorders are highly stigmatized by multiple systems (e.g., healthcare, education, legal, social). As a result, they are more likely to experience discrimination and health inequities [1, 2]. Children of parents with substance use disorders often do not fare any better, as they frequently experience stigma and poorer outcomes by association [3, 4]. Calls to action for person-centered language for alcohol and other drug problems have led to improved terminology [5–8]. Despite a long history of stigmatizing, offensive labels such as “children of alcoholics” and “crack babies,” children have been left out of person-centered language initiatives. Children of parents with substance use disorders can feel invisible, shameful, isolated, and forgotten—particularly in treatment settings when programming is centered on the parent [9, 10]. Person-centered language is shown to improve treatment outcomes and reduce stigma [11, 12]. Therefore, we need to adhere to consistent, non-stigmatizing terminology when referencing children of parents with substance use disorders. Most importantly, we must center the voices and preferences of those with lived experience to enact meaningful change and effective resource allocation.
Parents with substance use disorders are highly stigmatized by multiple systems (e.g., healthcare, education, legal, social). As a result, they are more likely to experience discrimination and health inequities [1, 2]. Children of parents with substance use disorders often do not fare any better, as they frequently experience stigma and poorer outcomes by association [3, 4]. Calls to action for person-centered language for alcohol and other drug problems have led to improved terminology [5–8]. Despite a long history of stigmatizing, offensive labels such as “children of alcoholics” and “crack babies,” children have been left out of person-centered language initiatives. Children of parents with substance use disorders can feel invisible, shameful, isolated, and forgotten—particularly in treatment settings when programming is centered on the parent [9, 10]. Person-centered language is shown to improve treatment outcomes and reduce stigma [11, 12]. Therefore, we need to adhere to consistent, non-stigmatizing terminology when referencing children of parents with substance use disorders. Most importantly, we must center the voices and preferences of those with lived experience to enact meaningful change and effective resource allocation.
Disabled people face many problems in their lived reality, as evidenced by the content of the UN Convention on the Rights of Persons with Disabilities. Disabled people are constantly engaged in activism to decrease their problems. However, disabled people cannot do all the work by themselves and need allies (who can be so-called non-disabled people or disabled people of a different background to other disabled people) given the many barriers disabled people face in being activists, given the precarious lived reality of many, and given the many problems in need of solving. At the same time, the expectations linked to being an authentic ally of disabled people pose many challenges and stressors and a danger of burnout for the ally. Therefore, the aim of this study was to better understand the academic coverage of allyship and allies in relation to disabled people in general, and specifically the coverage of challenges, stressors, and danger of burnout for allies of disabled people. To fulfill this aim, we performed a scoping review of academic abstracts and full texts employing SCOPUS, the seventy databases of the EBSCO-HOST and the Web of Science. Of the 577 abstracts, covering allies and allyship in relation to disabled people that were downloaded, 306 were false positives. Of the 271 relevant ones, the content of six abstracts suggested a deeper coverage of allyship/allies in the full texts. Within the full texts, two mentioned ally burnout and four mentioned challenges faced by allies. Among the 271 abstracts, 86 abstracts mentioned allies without indicating who the allies were, 111 abstracts mentioned specific allies with technology as an ally being mentioned second highest. Sixty-three abstracts covered specific topics of activism for allies. Furthermore, although searching abstracts for equity, diversity, and inclusion (EDI) related phrases, terms, and policy frameworks generated sixty-three abstracts, only three abstracts mentioned disabled people. Abstracts containing science and technology governance or technology focused ethics fields terms did not generate any hits with the terms ally or allies or allyship. Searching abstracts and full texts, phrases containing ally or allies or allyship and burnout had 0 hits, ally terms with stress* generated four hits and phrases containing anti-ableism, or anti disablism, anti-disableist, anti-disablist, anti-ablist, or anti-ableist with ally terms had 0 hits. Our findings show many gaps in the coverage of allies and allyship in relation to disabled people especially around the barriers, stressors, and burnout that authentic allies of disabled people can face. These gaps should be filled given that disabled people need allies and that there are many challenges for being an authentic disabled or non-disabled ally of disabled people.
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