Person-first Language Research Articles

Giftedness as a framework of inclusive education

As societies move toward a deeper engagement with humanitarianism and egalitarianism, education systems have increasingly embodied a commitment to principles of inclusion. The field of gifted and talented education (GATE) has reflected these changes in recent discussions around equity, diversity, and inclusive practices. This article aims to re-examine the practices of gifted education and rethink the possibility of generating an egalitarianism-based, GATE-derived inclusive education discourse that can serve as a parallel to the predominant humanitarianism-drive inclusive education movement. Within a discourse of self-actualization, we propose framing “gifted” as a process-based, rather than person-based, construct that applies to all students as they are enabled to transact their gifts and talents through engaging in a “gift-ed” process through honing self-knowledge and learning gifted behaviors. We advocate the use of person-first language, (i.e., students with advanced learning needs/advanced and special learning needs (ALN/ASLN)) that will encourage specific interventions.

Advancing Diversity, Equity, and Inclusion in Scientific Publishing

Advancing Diversity, Equity, and Inclusion in Scientific Publishing

A case for change in how we refer to dual career athletes: a person first approach

ABSTRACT Rationale/Purpose Dual Career Athletes (DCA) combine education, training, or work with a sporting career within broader sports management and educational environments. A holistic approach embraces the DCA as a “person first, athlete second”. This study examines the literature regarding DCA stereotype, labelling, identity, and wellbeing, and proposes a change in how we refer to DCAs, to person(s) engaging in dual career (PEDC). Design/methodology/approach Using social identity theory (SIT) and self-categorisation theory (SCT) we discuss the use of person-first language regarding PEDCs. Three key areas are considered; PEDC stereotype; PEDC identity development and PEDC wellbeing within their sporting and educational environments. Findings PEDCs can adopt unidimensional athletic identities and experience stereotype with potentially negative implications for DC. PEDCs face challenges impacting wellbeing, exacerbated by narrow identity development and stereotype with low tendencies for help seeking. Labels can act as cues in stereotype and identity formation and wellbeing promotion. Practical Implications It is proposed that the term PEDC should be adopted by researchers, those involved in sports management structures, academic personnel within educational institutions, parents and peers. Research contribution : The study supports the holistic, person first approach to DC and proposes a change in how we refer to people engaging in DC.

Memory for syntactic differences in mental illness descriptions.

The American Psychiatric Association recommends that practitioners discuss mental illnesses using person-first, or comparatively state-based language, rather than trait-based language. The aim of this initiative is to both avoid treating the symptoms of an illness as a defining characteristic of the people who experience these symptoms and to reduce the stigmatization of mental illness. However, some of the implications of these initiatives have not been tested. Here, we investigate one of these implications-people's memory for changes in syntactic constructions in descriptions of mental illness. In three experiments, we observed that people form similar representations of state- and trait-based passages as reflected by their performance in two recognition tasks and a free-recall task. However, a fourth experiment suggested that participants' memories of the exact syntax they read are not so degraded that they are unable to recover what they read when explicitly prompted. Altogether, these results suggest that some aspects of the person-first language initiative are likely to be transient.

Communication Strategies for Patients Who Are Nonverbal.

Communication Strategies for Patients Who Are Nonverbal.

Inclusive Language Matters: Recommendations for Health Care Providers to Address Implicit Bias and Equitable Health Care

Problem Statement: Stigmatizing language—written and verbal—can fuel implicit bias among health care professionals, leading to unintentional negative effects in how they care for patients. To provide equitable care, health care professionals and systems must become aware of the language they use and learn to replace biased language with inclusive language. Background: The medical field strives to treat all patients equally, yet disparities in health care persist. These disparities are due, in part, to implicit bias that affects how health care professionals and systems care for patients. Although reports recommend developing education programs that address implicit bias, these programs fail to address an important contributor: stigmatizing language used among health care professionals. With guidance, health care professionals and institutions can recognize and replace their biased language to foster more inclusive communication that promotes equitable health care. Application: The AMA Manual of Style outlines standardized inclusive language that health care professionals can use to address bias in their writing, as well as in their clinical practice, teaching, and research. The guide recommends using person-first language, avoiding generalizations and labeling, describing specific details, and being sensitive to the preferences of individuals or groups. The guide also provides detailed recommendations for using inclusive language regarding race/ethnicity, physical or mental condition, sex or gender, sexual orientation, age, and socioeconomic status. With these guidelines, health care providers can replace stigmatizing language to reduce implicit bias and comprehensively address disparities in health care.

The use of person-first language in scientific literature focused on drug-seeking behavior: a cross-sectional analysis.

Person first language (PFL)- a way of referring to individuals with medical conditions or disability that emphasizes the person over their condition or disability- is important in reducing the stigma surrounding individuals who exhibit drug-seeking behavior. Drug-seeking behavior is generally associated with a negative connotation by healthcare professionals, which may create poor provider perceptions of these individuals and potentially impact patient care. Therefore, to reduce stigmatization surrounding drug-seeking behavior and to improve patient care in these individuals, the use of PFL should be promoted. The primary objective of this study is to investigate how frequently research articles focused on drug-seeking behavior adhere to PFL. We performed a cross-sectional analysis systematically searching PubMed for articles published between May 1, 2011, and April 30, 2020, focused on drug-seeking behavior. To be included, the article must have met the following criteria: (1) published in a peer-reviewed journal; (2) relevant to drug-seeking behavior; and (3) must include human subjects and be retrievable in English. All articles were screened and data were extracted independently in a masked, duplicate fashion. Each article was reviewed for 19 predefined non-PFL terms with certain terms adopted from the American Medical Association Manual of Style. Our search returned 699 articles related to drug-seeking behavior, of which 390 articles met inclusion criteria and were analyzed for non-PFL. Our analysis found only 13.6% (53/390) of articles adhered to PFL while 86.4% (337/390) of articles contained at least some form of non-PFL. There was no association between PFL adherence and extracted study characteristics. PFL adherence is uncommon among research literature focused on drug-seeking behavior. The power of language can be profound, and should be understood by researchers, health care providers, and educators alike, specifically when dealing with known and exhibited characteristics of substance use disorders. This is relevant because of the high prevalence of substance use disorders, limited amount of prior research, and the impact stigma has on patients and healthcare providers.

Older Adults' Perceptions of Frailty Language: A Scoping Review.

There is growing interest in conceptualizing and diagnosing frailty. Less is understood, however, about older adults' perceptions of the term "frail", and the implications of being classified as "frail". The purpose of this scoping review was to map the breadth of primary studies; and describe the meaning, perceptions, and perceived implications of frailty language amongst community-dwelling older adults. Eight studies were included in the review and three core themes were identified: (1) understanding frailty as inevitable age-related decline in multiple domains, (2) perceiving frailty as a generalizing label, and (3) perceiving impacts of language on health and health care utilization. Clinical practice recommendations for health care professionals working with individuals with frailty include: (1) maintaining a holistic view of frailty that extends beyond physical function to include psychosocial and environmental constructs, (2) using person-first language, and (3) using a strengths-based approach to discuss aspects of frailty.

Theory of autistic mind: A renewed relevance theoretic perspective on so-called autistic pragmatic ‘impairment’

Autism is typically characterised by impaired social communication, with pragmatic deficits commonly attributed to diminished theory of mind abilities. As such, autistic communicators have traditionally been used as a test case to evidence the explanatory power of relevance theory for ostensive-inferential communication.11The use of identity-first language (i.e. autistic woman) rather than person-first language (i.e. a woman with autism) is a considered one, and reflects the overall preferences expressed by autistic self-advocates and their allies (see Botha et al., 2021; Kenny et al., 2016). However, recent studies have begun to demonstrate the various difficulties that non-autistic people also have in understanding autistic people, such as problems in inferring autistic affective and mental states. These findings support the double empathy problem (Milton, 2012), which argues that intersubjective problems between autistic and non-autistic individuals are rooted not in one individual's deficient cognitive system but in a mutual failure to reach consensus. This paper challenges the way in which relevance theory has traditionally been applied to a so-called autistic pragmatic ‘impairment’ but argues that relevance theory—and in particular its central concept of mutual manifestness—may still offer crucial insights into these breakdowns of mutual understanding between autistic and non-autistic people.

Contextual Factors’ Impact on the Reception of Substance Use Disorder Treatment Language: An Interpretative Phenomenological Analysis

ABSTRACT Social stigma related to substance use can be a significant barrier to accessing treatment. Despite government institutions, psychological associations, and public advocacy groups promoting person-first language to decrease stigmatization, no prior study has investigated how those with a substance use disorder (SUD) respond to language used by mental health clinicians. The purpose of this study was to examine the experience of treatment language for persons seeking recovery from an SUD. An interpretative phenomenological analysis was used to analyze semi-structured interviews conducted with individuals who had recently received SUD treatment. The results indicated that language reception was highly dependent on five contextual factors: expertise of treatment professionals, relatability, readiness to change, awareness of the problem, and body language. Findings suggested that as participants identified peers or clinicians they could trust, language that had previously felt stigmatizing became informed with new and supportive meaning. In addition, the results indicated that participants responded to dichotomous language differently at various stages of recovery. The authors recommend that treatment professionals not only reflect on word choice to eliminate stigma and shame in treatment settings but also examine the contextual factors that may impact language reception.

Exploring an e-learning community's response to the language and terminology use in autism from two massive open online courses on autism education and technology use.

Prior research has identified the divergence across different stakeholder groups in the semantic choice of language when describing autism, as members of the autism and autistic community preferred to use identity-first language (autistic person), whereas professionals were more likely to use person-first language (person with autism). This study explored 803 e-learners’ responses from their comments across two massive open online courses on autism education held between 2017 and 2019. Comments from members of the autistic and autism community and professionals were analysed together using thematic analysis, to identify shared opinions on what, why and how language should be used when describing autism across stakeholder groups. Learners agreed that autistic individuals should guide others on which terminology to use when describing autism and that the diagnostic label is a way to facilitate understanding across stakeholder groups and help the individual gain access to support. Semantic language choices may matter less as long as the person’s difficulties are clearly acknowledged, with adaptations made to meet their specific needs. Adding to a growing body of literature on terminology use in autism research and practice, we highlight that consideration for semantic choice of language use should focus on communicating an individual’s strengths and differences.Lay abstractWithin the neurodiversity movement, one recent divergence is in the semantic choice of language when describing autism, as members of the autism and autistic community preferred to use identity-first language (autistic person), whereas professionals were more likely to use person-first language (person with autism). This study explored 803 e-learners’ responses from their comments across two massive open online courses on autism education held between 2017 and 2019. Learners agreed that autistic individuals should guide others on which terminology to use when describing autism, and although identity-first language acknowledges autism as part of an individual’s identity, it can also conjure up negative stereotypes and be stigmatising. Although family, friends and professionals highlighted that the diagnostic label is a way to facilitate understanding across stakeholder groups and help autistic individuals gain access to support, autistic self-advocates found the process of disclosing autism as a form of disability to conflict with their sense of identity, and broader terms such as ‘autism spectrum’ failed to capture individual strengths and weaknesses. Semantic language choices may matter less as long as the person’s difficulties are clearly acknowledged, with adaptations made to meet their specific needs. Adding to a growing body of literature on terminology use in autism research and practice, we highlight that language used when describing autism should follow the autistic individual’s lead, with the primary focus on communicating an individual’s strengths and difficulties, to foster a sense of positive autism identity and inclusivity, and enable access to appropriate support.

Commentary on Kelly et al.: The struggle to define or be defined.

Language plays a key role in the production and exercise of stigma power. Research examining how language is used, accepted and resisted in the substance use field has value for developing inclusive policies and programs. Future research must involve people with substance use issues in deciding what constitutes non-stigmatizing language. Stigma is a vehicle for power. It sustains social hierarchies erected to exploit, control, manage and exclude certain social groups with the aim of enforcing norms, reinforcing dominance and perpetuating segregation [1]. In the 1960s, labeling theorists and stigma scholars began highlighting the key role that language plays in the production and exercise of stigma power. This scholarship exposed the potent effects that social labels have on people who live with discredited attributes and devalued conditions, including people with substance use issues. Kelly, Greene & Abry's [2] study builds upon this empirical and theoretical foundation to examine how language shapes public attitudes (i.e. social stigma) towards opioid use disorders. Their research revealed that certain terms, such as ‘disease’, and attributes, such as gender, evoked different stereotypes and beliefs about people with opioid use disorders, such as blame, fear and recovery potential. The study found that the biomedical term ‘chronically relapsing brain disease’ was associated with lower levels of blame attribution; however, the results were inconclusive, as other non-biomedical terms (e.g. ‘problems’) were associated with increased prognostic optimism. Studies of this nature have value in the substance use field where language is contested and terms fall out of favor rapidly. This is not a minor disagreement about semantics; rather, it represents struggles for power. As Szasz famously stated: ‘In the animal kingdom, the rule is, eat or be eaten; in the human kingdom, define or be defined’ [3]. Throughout history, people with substance use issues have been subjugated by systems of oppression rendering them voiceless and powerless. They have been criminalized, medicalized, institutionalized, politicized and ascribed with dehumanizing and disempowering labels, such as addict, junkie and abuser. Stigmatizing terms produce stereotyped imagery and reinforce dominant belief systems that inform and justify society's poor treatment of people with substance use issues. Such labels also have the profound effect of influencing how people with substance use issues perceive themselves, contributing to internalized stigma, low self-worth and reluctance to seek help. Initiatives aimed at reducing social stigma have focused on educating the public and the media about the proper language when referring to people with substance use issues [4]. Avoiding the term ‘addict’ and using people-first language are common messages. However, formulating these recommendations is no small feat, as major disagreement exists in the substance use field. Seemingly innocuous words, such as recovery, treatment, addiction and disorder, are passionately resisted by people who reject the history, epistemology and paradigm conveyed by these constructs. Concepts extending from the biomedical model reinforce asymmetrical power relations that subordinate people with lived experience and, therefore, are actively opposed by people who use drugs. Reclamation of stigmatized labels, such as the term ‘alcoholic’ by participants in step programs, further complicates the terrain [5]. Despite the uncertainty, the self-identifying labels chosen by people with substance use issues must be respected. Ultimately, that is what matters most. Appreciating the reasons why certain labels, including biomedical terms, are resisted and rejected by people with lived experiences also holds tremendous value for understanding how stigma is experienced and perceived by people with substance use issues. The terms used to characterize people with substance use issues in the rules, policies and procedures of social institutions also have implications for structural stigma. Derogatory language written into laws and policies (e.g. abuser, addict, non-compliant, clean/dirty) can fuel stigma by reinforcing stereotypes, permitting stigmatizing practices and legitimizing unfair treatment. Again, it is the perspective of people with substance use issues that matters most, and they should be involved in developing and reviewing laws and policies with the aim of eliminating stigmatizing language. The study by Kelly, Greene & Abry [2] offers valuable insights into the terms that evoke opioid use disorder-related stigma among the public. Investigating how this resonates with people who live with opioid use disorders is an important next step. It is time to challenge the ‘define or be defined’ logic and dismantle existing power differentials that contribute to stigma. None.

Does Language Matter? Identity-First Versus Person-First Language Use in Autism Research: A Response to Vivanti

In response to Vivanti’s ‘Ask The Editor…’ paper [Journal of Autism and Developmental Disorders, 50(2), 691–693], we argue that the use of language in autism research has material consequences for autistic people including stigmatisation, dehumanisation, and violence. Further, that the debate in the use of person-first language versus identity-first language should centre first and foremost on the needs, autonomy, and rights of autistic people, so in to preserve their rights to self-determination. Lastly, we provide directions for future research.

Mapping changes in the obesity stigma discourse through Obesity Canada: a content analysis.

BackgroundStigmatization of persons living with obesity is an important public health issue. In 2015, Obesity Canada adopted person-first language in all internal documentation produced by the organization, and, from 2017, required all authors to use person-first language in abstract submissions to Obesity Canada hosted conferences. The impact of this intentional shift in strategic focus is not known. Therefore, the aim of this study was to conduct a content analysis of proceedings at conferences hosted by Obesity Canada to identify whether or how constructs related to weight bias and obesity stigma have changed over time.MethodsOf 1790 abstracts accepted to conferences between 2008–2019, we excluded 353 abstracts that featured animal or cellular models, leaving 1437 abstracts that were reviewed for the presence of five constructs of interest and if they changed over time: 1) use of person-first versus use of disease-first terminology, 2) incorporation of lived experience of obesity, 3) weight bias and stigma, 4) aggressive or alarmist framing and 5) obesity framed as a modifiable risk factor versus as a disease. We calculated and analyzed through linear regression: 1) the overall frequency of use of each construct over time as a proportion of the total number of abstracts reviewed, and 2) the ratio of abstracts where the construct appeared at least once based on the total number of abstracts.ResultsWe found a significant positive correlation between use of person-first language in abstracts and time (R2 = 0.51, p < 0.01 for frequency, R2 = 0.65, p < 0.05 for ratio) and a corresponding negative correlation for the use of disease-first terminology (R2 = 0.48, p = 0.01 for frequency, R2 = 0.75, p < 0.001 for ratio). There was a significant positive correlation between mentions of weight bias and time (R2 = 0.53 and 0.57, p < 0.01 for frequency and ratio respectively).ConclusionUse of person-first language and attention to weight bias increased, while disease-first terminology decreased in accepted abstracts over the past 11 years since Obesity Canada began hosting conferences and particularly since more explicit actions for expectations to use person-first language were put in place in 2015 and 2017.

“You’re only a carrier” – women and the language of haemophilia

Abstract Women who have the gene variant for haemophilia are labelled solely as ‘carriers’ unless they have a factor VIII activity of ≤40%. This term, which describes an individual who can pass on a disorder but are themselves unaffected, reflects a legacy that extends from the 18th century to the present day. There is strong evidence that women labelled as carriers experience heavy periods, joint damage, pain and impaired quality of life. The label ‘carrier’ does not recognise this burden and is associated with guilt, stigma and difficulty accessing care. People living with a long-term disorder should now be described using person-first terminology and it is common to see the term ‘people with haemophilia’. The term ‘carrier’ should be limited to its application in genetics and not used as a catch-all label for women with haemophilia.

Ontario Public Library Websites and the Framing of Disability

An environment may be technically accessible, in that it complies with accessibility legislation or makes space for those with disabilities, but that does not guarantee equality. A space or experience can be technically accessible according to a standard and still be unusable, difficult to use or not perceived to be inclusive of those with disabilities. This research takes this understanding of ‘technically accessible’ in order to examine a set of medium-sized Ontario public library websites. Overall, findings are promising as the websites use person-first language and provide a variety of information of value for those with disabilities. At the same time, there are opportunities for improvement.

Removing the stigma of medication for opioid use disorder

Removing the stigma of medication for opioid use disorder

Researcher perspectives on including people who use drugs in clinical research

ABSTRACT Background: People who use drugs are commonly excluded from clinical research despite being disproportionately impacted by numerous health conditions. Recent work indicates that community-recruited individuals report low support of research inclusion for persons reporting substance use. Objective: This study conducted a mixed-method assessment of researchers’ attitudes on including persons reporting substance use in clinical research. Methods: Respondents (N = 168; 58% female; 58% psychologists) recruited via scientific society listservs and Twitter completed a survey containing two hypothetical research vignettes. Quantitative items evaluated respondents’ endorsement of research participation by healthy adults, people who use drugs, and vulnerable populations. Qualitative items included open-ended questions asking reasons why people who use drugs should and should not participate in research. Results: Respondents reported significantly lower support for research participation by people who use drugs compared to healthy adults (p <.001). Open-ended responses concerning the inclusion of people who use drugs included themes relevant to the Belmont Principles (e.g., capacity to consent) and data quality (e.g., “bad data,” poor compliance). Conclusion: Although lower support for research participation by people who use drugs was observed compared to healthy adults, the magnitude of this difference was smaller than reported for prior community-recruited respondents. These findings emphasize salient factors that may serve as both protections for and barriers to inclusion of people who use drugs in research. Initiatives including adoption of person-first language, addressing stereotyping of people who use drugs, and emphasizing the benefits of including these populations in clinical research should be explored to reduce bias while retaining needed protections.

Changing the Language of How We Measure and Report Smoking Status: Implications for Reducing Stigma, Restoring Dignity, and Improving the Precision of Scientific Communication.

Accurate classification of smoking status has long been regarded as an essential prerequisite for advancing tobacco-related epidemiologic, treatment, and policy research. However, the descriptors we commonly use to classify people who smoke may inadvertently perpetuate harmful, stigmatizing beliefs and negative stereotypes. In recognizing the power of words to either perpetuate or reduce stigma, Dr. Nora Volkow—Director of the National Institute on Drug Abuse—recently highlighted the role of stigma in addiction,1 and the movement encouraging the use of person-first language and eliminating the use of slang and idioms when describing addiction and the people whom it affects.2,3 In this commentary, we make an appeal for researchers and clinicians to use person-first language (eg, “people who smoke”) rather than commonly used labels (eg, “smokers”) in written (eg, in scholarly reports) and verbal communication (eg, clinical case presentations) to promote greater respect and convey dignity for people who smoke. We assert that the use of precise and bias-free language to describe people who smoke has the potential to reduce smoking-related stigma and may enhance the precision of scientific communication.

Language Matters: It Is Time We Change How We Talk About Addiction and its Treatment.

The way we communicate about addiction, its treatment, and treatment outcomes matters to individuals affected by addiction, their families, and communities. Stigmatizing language can worsen addiction-related stigma and outcomes. Although non-professional terminology may be used by individuals with addiction, the role of clinicians, educators, researchers, policymakers, and community and cultural leaders is to actively work toward destigmatization of addiction and its treatment, in part through the use of non-stigmatizing language. Role-modeling better approaches can help us move away from the inaccurate, outdated view of addiction as a character flaw or moral failing deserving of punishment, and toward that of a chronic disease requiring long-term treatment. Non-stigmatizing, non-judgmental, medically-based terminology and the adoption of person-first language can facilitate improved communication as well as patient access to and engagement with addiction care. Person-first language, which shifts away from defining a person through the lens of disease (eg, the term "a person with addiction" is recommended over the terms "addict" or "addicted patient"), implicitly acknowledges that a patient's life extends beyond a given disease. While such linguistic changes may seem subtle, they communicate that addiction, chronic pain and other diseases are only one aspect of a person's health and quality of life, and can promote therapeutic relationships, reduce stigma and health and disparities in addiction care. This article provides examples of stigmatizing terms to be avoided and recommended replacements to facilitate the dialogue about addiction in a more intentional, therapeutic manner.