Visible Disability Research Articles

Disruptions in Transportation and Medical Care Experienced by Handlers of Assistance Dogs in Australia

ABSTRACT Anecdotal reports and limited available empirical evidence indicate that assistance-dog handlers are often denied access to places they are legally entitled to take their assistance dog. However, the frequency and contexts of access denials in Australia have not been established, and the emotional impacts of these denials are not well described. Furthermore, qualitative findings suggest that impromptu interactions with other people and dogs within the community can have both positive and negative impacts on the handler and assistance dog; larger-scale, quantitative research is needed. The aim of this study was to characterize the frequency and contexts, and emotional impacts, of assistance-dog access denials among handlers in Australia, as well as handler interactions with people and dogs. Handlers (n = 77) throughout Australia completed an online survey. Commercial passenger vehicles (CPVs, e.g., Uber/taxi) were the most commonly reported context for access denials, reportedly occurring about half the time, followed by hotels, restaurants, and cafés. Bystander support was rare in any setting. Some participants reported avoiding CPVs (52%), restaurants (13%), and medical/dental centers (13%) owing to prior access denials. The emotional impacts of the denials were very negative (e.g., annoyed, excluded, anxious, hurt). Having a visible or invisible disability had no bearing on the frequency of access denials, nor did having a conventional (e.g., Labrador Retriever) versus unconventional (e.g., Pug) breed of assistance dog. Unexpected interactions with people and other dogs were common; participants reported having a positive social interaction as a good outcome, and the dog becoming temporarily distracted as a common negative outcome. Unfortunately, eight participants (10%) had to retire a dog as an outcome of a negative interaction. Some free-text responses indicated that the reporting process for access denials is onerous and ineffective. Future research should seek to understand whether this can be remedied.

The Health and Economic Benefits of United States Investments in Measles and Rubella Control and Elimination

Background: Prior to measles vaccine introduction in 1963, measles virus caused hundreds of thousands of annual reported cases, which led to substantial US morbidity, mortality, and costs. Similarly, congenital rubella syndrome (CRS) led to highly visible and tragic lifelong disability for thousands of Americans, before rubella vaccine introduction in 1969. The US certified national virus transmission elimination of indigenous measles in 2000 and rubella in 2004. Methods: Applying an existing integrated transmission and economic model, this analysis characterizes the net benefits of US investments in measles (1963–2030) and rubella (1969–2030) immunization assuming continued high routine immunization coverage. Due to importation risks, the US maintains two doses of both vaccines in its routine immunization schedule. Results: This analysis estimates total US costs of 8.1 billion (economics reported in 2023 US dollars) for measles immunization for 1963–2023 and 14.1 billion for rubella immunization for 1969–2023. The analysis estimates an additional approximately 1.2 billion for measles immunization and 1.5 billion for rubella immunization expected for 2024–2030. Historical and future US investments prevented an estimated approximately 237 million measles infections, 228,000 measles deaths, 193 million rubella infections, and 166,000 CRS cases. These investments imply net benefits (from avoided treatment costs minus immunization costs) of approximately 310 billion for measles and 430 billion for rubella and CRS, even without incorporating avoided productivity losses and intangible costs. Conclusions: US investments in measles and rubella immunization continue to provide enormous savings of human and financial costs and to prevent substantial mortality and morbidity.

Bias in Observed Assessments in Medical Education: A Scoping Review.

Observed assessments are integral to medical education but may be biased against structurally marginalized communities. Current understanding of assessment bias is limited because studies have focused on single specialties, levels of training, or social identity characteristics (SIDCs). This scoping review maps studies investigating bias in observed assessments in medical education arising from trainees' observable SIDCs at different medical training levels, with consideration of medical specialties, assessment environments, and assessment tools. MEDLINE, Embase, ERIC, PsycINFO, Scopus, Web of Science Core Collection, and Cochrane Library were searched for articles published between January 1, 2008, and March 15, 2023, on assessment bias related to 6 observable SIDCs: gender (binary), gender nonconformance, race and ethnicity, religious expression, visible disability, and age. Two authors reviewed the articles, with conflicts resolved by consensus or a third reviewer. Results were interpreted through group review and informed by consultation with experts and stakeholders. Sixty-six of 2,920 articles (2.3%) were included. These studies most frequently investigated graduate medical education (44 [66.7%]), used quantitative methods (52 [78.8%]), and explored gender bias (63 [95.5%]). No studies investigated gender nonconformance, religious expression, or visible disability. One evaluated intersectionality, with SIDCs described inconsistently. General surgery (16 [24.2%]) and internal medicine (12 [18.2%]) were the most studied specialties. Simulated environments (37 [56.0%]) were studied more frequently than clinical environments (29 [43.9%]). Bias favoring men was found more in assessments of intraoperative autonomy (5 of 9 [55.6%]), whereas clinical examination bias often favored women (15 of 19 [78.9%]). When race and ethnicity bias was identified, it consistently favored White students. This review mapped studies of gender, race, and ethnicity bias in the medical education assessment literature, finding limited studies on other SIDCs and intersectionality. These findings will guide future research by highlighting the importance of consistent terminology, unexplored SIDCs, and intersectionality.

P169 Optimising self-management in axial spondyloarthritis: a qualitative exploration of patient perspectives

Abstract Background/Aims In the UK, people living with axial spondyloarthritis (axSpA) will see their rheumatology team once a year, or less during routine clinical practice. Providing patients with the knowledge, tools and resources to confidently self-manage their condition is therefore an important component of patient care. The 2022 NICE Impact Arthritis report indicates that education and non-pharmacological treatment is lacking, making long-term self-management difficult for patients. Development of effective self-management interventions requires a deep understanding of the psychosocial context of people living with axSpA and the challenges they face when managing the practical, physical and psychological impacts of axSpA. This study therefore aimed to collect rich qualitative data from people living with axSpA to understand their experiences living with and managing their condition. Methods Online surveys were designed in alignment with guidance from Braun et al., (2021), regarding online surveys as a qualitative research tool. Open-ended questions were prioritised to collect rich qualitative data. Surveys were distributed via patient organisations and Twitter. Responses were collected via the Jisc online surveys platform from July 2022-January 2023. Results were interpreted using inductive reflexive thematic analysis. Results Data were collected from 30 axSpA participants, with varying durations of diagnosis (<1 year to > 20 years). 70% of respondents were female, and all participants were aged 25-84 years. Over half (63.3%) had experienced symptoms for ≥10 years before diagnosis. Three themes were generated from the qualitative data. Theme 1) Personalised, flexible approach: AxSpA is a heterogenous, fluctuating, unpredictable condition, thus requiring a personalised, flexible approach to self-management. Optimal self-management requires a deep understanding and acceptance of one’s own condition and symptoms, to effectively self-regulate emotions and behaviour and communicate changing needs in response to fluctuating symptoms. Theme 2) Making the invisible, visible: people living with axSpA often have no visible disability, and can struggle to feel seen and believed, especially if experiencing diagnostic delay and lacking education about axSpA. Feeling supported, believed and understood is critical for disease acceptance and feeling confident and able to engage with positive health behaviours and communicate needs, versus isolation, inner conflict, guilt and suffering through a “personal world of pain”. Theme 3) Coping with fatigue and pain: fatigue and pain are the most challenging aspects of the condition to manage, due to their unpredictability and impact on emotional resilience, autonomy, and motivation or ability to perform self-care behaviours. Conclusion Optimal self-management in axSpA requires early diagnosis, education and reassurance from healthcare professionals, including guidance for communicating with friends, family and colleagues about axSpA, and signposting to patient organisations/communities. Self-management interventions should target fatigue, pain and disease acceptance, and support patients to gain a deep understanding of their own condition to identify personalised, flexible self-care strategies that work for them. Disclosure R. Barnett: None. C. Clarke: None. R. Sengupta: Honoraria; RS has received honoraria from Abbvie, Biogen, BMS, Eli Lilly, MSD, Novartis, Pfizer, Roche and UCB, all unrelated to this abstract. P. Rouse: None.

The effects of assistance dogs on social acknowledgements and engagement of people with visible disabilities – A case study

Abstract Stigmatization of people with visible disabilities is a well-recognized concept, as is the knowledge that Assistance Dogs (ADs) may serve as social lubricants. This case study explored the interplay of these two concepts in the everyday life of a person (Mary) with a visible disability and her AD (Cino). This mixed methods study collected both quantitative observational data and qualitative interview data. Four episodes of Mary interacting in the community with and without Cino (AD) were observed using an observation checklist. These were complimented by four in-depth interviews with Mary and one with a close family member. Interview transcripts were used to construct a thematic understanding of the complex ways in which Mary’s life and experience of living with significant disability are impacted by having Cino to support her. Observational data identified that the presence of Mary’s AD considerably increased social acknowledgements of Mary from members of the public during community interactions. Two major themes (The dog makes a difference, and Lack of understanding, awareness, and support) each with four subthemes, emerged from the interviews. The complex mesh of experiences related to the support of her AD(s), both positive and negative, are mapped in the subthemes. While both positive and negative aspects of AD ownership were identified and explored, Mary assesses the net effect of having Cino, as ultimately positive, outweighing numerous complications and drawbacks in life lived with disability. The findings contribute to a more nuanced understanding of the way ADs can impact both positively and negatively in the lives of people living with disability. These insights provide points that can be used in discussing potential AD support with people exploring this option. They also caution against simplistic, “do ADs really work?” approaches in research as Mary’s lived experiences show that this is nuanced by multiple personal, clinical, social, physical, and broad environmental factors.

Monstrous Pedagogy at the Intersections of White Privilege, Visible Disability

This autoethnographic article centers my White, disabled, and female body as a site of knowledge and struggle within the context of teaching an introductory communication course. I chronicle through key experiences I have had as an official instructor. I draw from various scholars whose work explicates the official teacher’s body as consequential. As a White woman with a visible disability, I use Calafell’s articulation of monstrosity to process through how I perform my White, disabled, female identities in the classroom.

Invisibility and Visibility of Disability in Japan and Poland as a Social and C ultural Construct: Similarities and Differences

The visibility and invisibility of disability are present in various cultures. This study aims to analyze the invisibility and visibility of disability in Japan and Poland, focusing on the similarities and differences between the two countries.Cultural analyses of historical, social, and political backgrounds indicate the transition process from invisible disability to visible disability in both countries. Visibility and invisibility of disability are social and cultural constructs in Japan and Poland. The results revealed the similarities between the processes and constructs of researched terms and differences. Among the similarities are factors of the transition process from invisible to visible disability. However, the authors distinguished that the eugenic, deinstitutionalization, and empowerment trends in both countries developed differently. The differences in the socio-cultural construction of invisible and visible disability concern the historical and political determinants of both countries’ development after the Second World War up to the present time.

Critiques of ableist educational spaces

In this autoethngraphic paper, I chronicle three key experiences I have endured throughout my time in the U.S. educational system. Collectively, these moments have continuously shown me that disabled bodies like mine are not welcomed in academic spaces, overall. I choose these experiences, not because they are the only ones that have occurred, but because they most succintly represent my ongoing journey of understanding what it means to be a student and/or academic with a visible disability. I have kept these stories mostly to myself for a long time. However, I feel that now is the time to discuss what I have experienced as both a healing and challenging personal and academic endeavor. In addition, I hope students like myself can relate to these experiences and know they are not alone.

Short and Locked Down: The Impact of COVID-19 on a Person With Dwarfism

Living with a visible physical disability—specifically dwarfism—brings situational, psychosocial, and cultural challenges. The COVID-19 pandemic, and its restrictions, amplifies these dwarfism-related complexities, exposing the politics of visibility and exclusion, as well as spatial injustices. This autoethnographic paper deliberates these heightened disabling encounters in their various contextual layers—physical, social, and psychological. Fundamentally, people with dwarfism have become further disabled and disadvantaged because of the pandemic’s psychosocial stresses, contextual traumas, and physical exclusions. The paper intimately addresses the embodied, psychological, cultural, and spatial inequalities short-statured individuals endure because of the pandemic. Drawing on theoretical models of disability, critical disability literature, geographies of disability, as well as the conceptual paradigm of biopolitical power, the paper begins to make sense of these experiences so that shifts may occur in different spaces. Arguably, the experiences of COVID-19 that are shared here are also applicable to people with other disabilities.

Disability and sexuality: The sexual life of the person living with a disability, his affective life and his life as a couple

Sexuality with a disabling disease, or serious disabling or disability: a sensitive subject probably due to the association of the two words: sexuality and disability. The question of the emotional life, the life of a couple, the sexuality of a person living with a disability remains a real social and cultural problem. This necessarily impacts on the people concerned because they are victims of their states of disability. This is a subject that is difficult to address both by the couple, by society and by health professionals. In addition, it should be noted that regardless of their physical or psychological state, their visible or invisible disability, their chronic, serious, rare, disabling or disabling illness, or simply their difference, everyone has their own sexual identity. The feeling of love, the affective life, the sexual life of a person with a disability, their life as a couple, pleasure, do not disappear with the onset of illness or disability, it is accessible to all, disabled, sick, in a couple or single, married or not, all have the right to sexuality, to an emotional life regardless of their physical appearance, their mental handicap or other differences... However, for many people in a situation of disability, living one's sexuality remains a difficult aspect in their life as a couple, or not, or in their daily lives. Disability, whatever its origin, can contribute to the alteration or changes in the sexual life of a lambda individual, thus affecting his sexuality, his sexual pleasure... Health professionals are often confronted with suffering, physical and/or psychological pain. However, even today the question of the fulfillment and sexual serenity of people with disabilities remains a silent subject, an unresolved issue, not popularized, not a priority if I can put it that way, but the question of pleasure sex is often overlooked. It would seem that social representations approach the subject of the affective relationship and the love life of sick or disabled people, their life as a couple, their intimacy as a couple, their affective and love life, as being abnormality in the face of what they consider "normal".

Communities of Care: The Social Ethics of Victorian Fiction by Talia Schaffer

Reviewed by: Communities of Care: The Social Ethics of Victorian Fiction by Talia Schaffer Catherine J. Golden COMMUNITIES OF CARE: THE SOCIAL ETHICS OF VICTORIAN FICTION, by Talia Schaffer. Princeton: Princeton University Press, 2021. 296 pp. $45.00 hardback; $31.50 ebook. Communities of Care: The Social Ethics of Victorian Fiction by Talia Schaffer is a rare academic book that provides a fresh approach to Victorian literature, stimulates the scholarly mind, and offers sage lessons for academic life. As the subtitle promises, the book examines nineteenth-century fiction in which acts of care are omnipresent. Novels by Jane Austen, Charles Dickens, Charlotte Brontë, Charlotte Mary Yonge, George Eliot, and Henry James offer a record of caregiving before and after the mid-century ascendance of paid care and care communities that we can emulate today. Schaffer is admittedly “trying to do a lot of tasks at once,” but she does these tasks with excellence (p. 2). The result is a capacious, smart, and engaging book that is part theory, history, literary case [End Page 162] study, and pedagogy, bridging nineteenth-century literature with ideas of how we can care for one another today. The book is comprised of an introduction, six chapters, and an epilogue. The opening line, “Reader, I want to warn you from the start”—reminiscent of Jane Eyre’s (1847) “Reader, I married him”1—imparts intimacy, inviting us on a journey to uncover care ethics in fiction and life (p. 1). The introduction establishes a theoretical framework for the ethics of care and a definition of care, here meaning “an action, not a feeling” and “the connective tissue of social life” (pp. 5, 21). Chapter one, “Ethics of Care and the Care Community,” draws on feminist ethics and theories of community. Schaffer outlines five essential characteristics of care communities—“performativity, discursivity, affiliation, egalitarianism, and temporality”—a constellation of qualities evident in fiction and lived experience (p. 49). Schaffer also introduces the sustained metaphor of a cantilevered bridge (aptly a nineteenth-century invention), illuminating how relationship is a founding principle of care. For instance, Shaffer notes that “each side must seek the other by reaching toward that other from its own anchorage, braving the risks of empty space” (p. 30). Turning from theory to history in chapter two, “Austen, Dickens, and Brontë: Bodies before the Normate,” Schaffer considers a shift in nineteenth-century Britain from homebased care (a model she calls “ordinary bodies”) to a professional model of paid caregiving that institutionalized what was once part of everyday life (p. 24). Here we meet skepticism toward the medical professional through Austen’s Sanditon (1817) and the merits of ordinary bodies in Brontë’s Jane Eyre and Austen’s Persuasion (1818) through, respectively, the social relationships Jane forms with the Rivers sisters and the inclusive care community that tends to Louisa Musgrove after her impetuous leap from the Cobb. Dickens’s A Christmas Carol (1843) teaches us about more than saving just one boy with a visible disability but rather about forming a community of care that, in Tiny Tim’s words, embraces “every one!”2 Chapters three through six offer literary case studies of Victorian novels. Chapter three, “Global Migrant Care and Emotional Labor in Villette,” incisively examines professional care by an emerging global migrant population through Brontë’s Villette (1853). As Schaffer teases out the emotional labor of enigmatic Lucy Snowe in her roles as paid companion, nursery-governess, and schoolteacher, she aptly acknowledges the connection between the paid migrant caregiver to today’s disproportionate number of women caregivers of color, a group particularly impacted by the COVID-19 pandemic (p. 95). Chapter four, “Beyond Sympathy: The State of Care in Daniel Deronda,” addresses what Schaffer calls “feeling without acting” and a move from sympathy to care in her perceptive reading of Eliot’s last published novel, Daniel Deronda (1876) (p. 117). Schaffer [End Page 163] foregrounds a dyad of mutual reciprocity that forms between the titular Deronda seeking his identity and the spiritually rich but economically poor, disabled, and dying Mordecai Cohen. This chapter proposes a way of reading Daniel Deronda’s oft criticized turn to Zionism as an imagined “care community on an international scale...

Development and psychometric evaluation of public stigma of stroke scale (PSSS)

Stroke patients suffer from public stigma because strokes cause visible disability and heavy social burden. However, existing tools measuring stroke-related stigma do not consider public stigma. The aim of this study was to develop and evaluate a public stigma of stroke scale (PSSS). This cross-sectional study recruited 730 participants, aged above 18 years, with no diagnosis of stroke before. Scale items were generated after reviewing relevant literature and conducting interviews. An expert panel evaluated the validity and reliability of a preliminary scale. Exploratory factor analysis (EFA) and confirmatory factor analysis (CFA), bifactor CFA (B-CFA), Exploratory structural equation modelling (ESEM), bifactor-ESEM (B-ESEM) were performed to extract factors and evaluate fit on the factor structures. The Omega coefficient was 0.93, and the test–retest reliability coefficient was 0.721. The EFA extracted four factors: inherent ideology, aesthetic feelings, avoidance behaviour, and policy attitudes. These explained 61.57% of the total variance in the data. The four-factor model was confirmed by B-CFA, and met the fitness criteria. The PSSS yields satisfactory psychometric properties and can be used to assess stroke-related public stigma.

Falling Stories: Cinematic Naturalism and Disability in Frank Norris’ and Stephen Crane's City Sketches

Falling Stories: Cinematic Naturalism and Disability in Frank Norris’ and Stephen Crane's City Sketches

Guess Who’s Coming to Dinner (part II): further insights from primary school pupils’ social attitudes

ABSTRACT The present research aims to extend findings from a recent study in which a large sample of primary and secondary school pupils was asked to choose a hypothetical classmate they would invite to share five different activities. Results demonstrated that a visible disability represents a barrier for social participation and involvement. In the present study, we investigated how the expression of a gesture of solidarity modulated participants’ attitudes. Moreover, unlike the previous study, in the present one, the responses from pupils with and without disability were scored separately. The findings strongly support the notion that a visible disability generates pity and motivates a tendency to protect, but only very seldom are typically developing children attracted by the idea of becoming a good friend of a peer with disability. While pupils with disability tended to consider the choice of a peer with disability a realistic option in all situations, for pupils without disability the choice of a peer with disability was a sort of forced choice when related to a gesture of solidarity and good-will, but only an abstract possibility in the social and sport activities.

Identity management in the workplace: Coworker perceptions of individuals with contested disabilities

BACKGROUND: Much of the existing research on disability and disability-related workplace accommodations presume that disabilities are visible and commonly accepted. Yet, many disabilities are invisible and contested, or perceived as fake, low-severity/minor, and/or illegitimate. OBJECTIVE: The purpose of this research is to investigate the effect of identity management strategies that individuals with contested disabilities might use when requesting accommodations in a workplace setting. METHODS: We used two electronic experiments to investigate the effect of identity management strategies on perceived fairness of accommodations and attributions about individuals requesting accommodations. Studies 1 and 2 used online surveys to collect data from 117 and 184 working adults, respectively. RESULTS: Study 1 indicates that four invisible disabilities (chronic fatigue syndrome, attention deficit/hyperactivity disorder, generalized anxiety disorder, and chronic migraine) are viewed as significantly less legitimate than the visible disability paraplegia. In study 2, any form of disclosure of a contested disability (vs. no disclosure) resulted in higher perceived fairness and more positive attributions about the person requesting accommodations. There were minimal differences between the different identity management strategies tested. CONCLUSIONS: Workplaces should work to create spaces in which employees can disclose contested disabilities to managers and coworkers without fear of enhanced stigmatization.

Attitudes of Primary School Teachers and Its Associated Factors Toward Students With Attention Deficit Hyperactivity Disorder in Debre Markos and Dejen Towns, Northwest Ethiopia.

BackgroundAlthough most instructors appear to understand visible disability, they appear to have a negative attitude toward children with attention deficit hyperactivity disorder (ADHD), considering them to be lazy or purposefully disruptive. In Ethiopia, there is a scarcity of data on teachers’ attitudes toward children with ADHD.MethodsAn institution-based cross-sectional study was conducted. A pre-tested questionnaire that contains a case vignette was administered through face-to-face interview with 417 teachers. The data was entered into Epi-data version 4.2 and exported into SPSS version 25.0 for analysis. Multiple linear regression analyses were used to assess the correlates of attitude in the participants and a B coefficient with 95% confidence interval (CI) were used. The statistical significance was accepted at p-value < 0.05.ResultsThe mean score of the teachers’ attitude toward ADHD was 41.6 ± 5.4 (95% CI; 41.12, 42.16) and 46% of the participants had unfavorable attitudes. Low level of educational status, knowledge, teaching experience, familiarity in teaching students with ADHD, and having training were significantly associated with attitude of the teachers.ConclusionThe study revealed that nearly half of the participants had an unfavorable attitude toward students with ADHD. Based on the findings, it was recommended that it is better to strengthen training of teachers to recognize students with ADHD.

Reverse Facial-submental Artery Island Flap with Reinnervation of the Anterior Belly of the Digastric Muscle.

Reconstruction of the upper lateral lip subunit is challenging, and use of several classical local flaps have been previously reported. However, these methods have drawbacks such as visible scarring, anatomic distortion, and functional disability. To obtain satisfactory results, preservation of perioral function is important. We report a case of functional upper lip reconstruction after tumor resection using a reverse facial-submental artery island flap with a reinnervated anterior belly of the digastric muscle (ABDM) without sacrificing the perioral structure. A 73-year-old man presented with basal cell carcinoma on the left upper lip which was widely excised, including the orbicularis oris muscle. The remaining 4 cm × 3.5 cm defect was reconstructed using a reverse facial-submental artery island flap with ipsilateral ABDM. The motor nerve of the ABDM was sutured with the stump of the buccal branch of the ipsilateral facial nerve. The postoperative course was uneventful, and good functional and esthetic recovery were observed at 12-month follow-up. This procedure may be an alternative option for reconstruction of lateral upper lip defects.

‘… they had interpreted “disability” as referring to a patently visible disability’: experience of a patient group with NICE

Erythropoietic protoporphyria (EPP) is an ultra-rare genetic disorder characterised by intolerance to visible light. Starting in early childhood, people with EPP suffer from social isolation, impaired educational and occupational opportunities, and low quality of life. Afamelanotide is the only effective and approved therapy for EPP. In England, its cost-effectiveness is currently assessed by the National Institute for Health and Care Excellence (NICE), which in 2018 issued a negative recommendation for funding. Stakeholder organisations, including our patient organisation, submitted appeals against the recommendation, which were upheld in all possible grounds. Moreover, the appeal panel expressed concerns about whether the evaluating committee discriminated against people with EPP and suggested that it seek guidance regarding the Equality Act 2010. However, three years later, the identified issues have not been addressed and patients in England remain without treatment. Afamelanotide represents another example for the trend towards a loss of fairness in NICE decisions.

"I Just Stay in the House So I Don't Need to Explain": A Qualitative Investigation of Persons with Invisible Disabilities

Research has shown that persons with disabilities continually face discrimination. More research attention has focused on individuals’ experiences of visible disability, despite evidence that there are higher numbers worldwide of people with invisible disabilities. As such, persons with invisible disabilities can feel under-represented in disability literature. A qualitative study was conducted to address this. Twenty-five persons with an invisible disability were recruited to take part in focus groups and interviews aimed at understanding the lived experience of invisible disability on social life and within the workplace. Data were analyzed using Braun and Clarke’s reflexive thematic analysis, identifying themes of (1) Incongruity between looking and feeling, (2) The impact of others, (3), Adaptation, (4) Talking about disability, (5) (Un)supported and (un)accepted, and (6) Discrimination/legislation. The findings indicate that the language, attitudes and behaviour of others are important to support inclusion in the social and working lives of those with invisible disabilities. Persons without a disability should be willing to talk about disability, see the strengths of those with an invisible disability and be mindful of language used around visibility. Suggestions relating to what we can do to be better support those with an invisible disability in society are discussed.

Inflamed skin lesions along the course of a nerve as patient self-help proxy indicator of nerve abnormalities in leprosy

Objectives This study sought to determine the acceptability and utility of a self-assessment tool using inflamed skin lesions as proxy indicator of nerve abnormalities; and if nerve proximity to these skin lesions increases the risk of nerve abnormality and deformity in leprosy. Methods A cohort of 200 Filipino patients were monitored before and during reaction. Using a self-assessment tool, skin lesions were independently scored by the patient and a clinician, while the nerves were assessed by a clinical staff. Skin lesions and nerves were scored on a 0–15 severity scale; and nerves were noted as near or distant from the skin lesion. Skin lesions with type-1 or type-2 reactions were included. Results A total of 314 inflamed skin lesions matched with the same number of nerves near and distant from skin lesions were studied. There was no significant difference (P = 0.1771) in skin lesion scores independently determined by the patient and the clinician. Mean skin lesion score was 2 in the absence of a reaction; and 5 at the peak of a reaction. Nerve scores remained low in the absence of a reaction, and when a reaction occurred in the skin lesion distant from the nerve. However, nerve scores were significantly higher when a skin lesion near the nerve became inflamed (0.24 vs 1.03; P &lt; 0.0001). Among these skin lesions, 15% had nerve findings before the skin reaction; 32% had both nerve and skin findings, while 53% had skin reaction without nerve findings. At the peak of a reaction, seven new episodes of visible disability were recorded with skin lesion and nerve scores ≥3; and all nerves involved were located near inflamed skin lesions. No deformity was associated with nerves distant from inflamed skin lesions. Ninety-five percent (95%) of patients considered the tool highly acceptable, important and beneficial. Conclusion and recommendation This study demonstrates the acceptability and utility of a self-assessment tool using inflamed skin lesions as proxy indicator of nerve abnormality; and that with adequate training, patients can reliably be delegated to monitor their own skin lesions. This study also demonstrates the higher risk of deformity and abnormality among nerves near inflamed skin lesions.