Lived Experiences of Public Disability Representations: A Scoping Review

Abstract

Research has largely focussed on public perceptions of people with disabilities, particularly in the media. However, there is a lack of studies exploring how individuals with disabilities themselves experience public disability representation. This scoping review examines the lived experiences of individuals with disabilities regarding such representations. Eligible studies were peer-reviewed, published between January 1948 and July 2024, and presented qualitative findings on experienced public disability representation. A systematic search was conducted across PubMed, Scopus, ProQuest, OVID, EBSCO, and Web of Science using variations of the terms ’representation’ and ‘disability’, yielding 32 relevant studies. Data were analysed using both deductive and inductive methods. Deductive thematic analysis aligned the findings with two established media disability representation typologies: traditional and contemporary. Inductive thematic analysis identified three key themes—ignorance, incapability, and otherness—that illustrate how individuals with disabilities experience public representations. Overall, the review found that despite the absence of comparative studies, individuals with diverse disabilities report similar, predominantly negative experiences of public disability representation. Future studies should adopt an intersectional, cross-disability framework to better capture the experiences of people with disabilities, including those with intellectual disabilities.

1. Introduction

Public disability representation has been extensively studied. For example, this research has proceeded by employing various typologies and scales to assess elements of disability representation in the media (e.g., [1,2]) or perusing disability stigma rooted in the broader concept of disability representation (e.g., [3,4]). The extent to which actual disability representations align with the experiences of individuals with disabilities remains unclear given the paucity of research regarding lived experiences of public disability representation. This disregard for the experiences of people with disabilities is especially striking given the urgent call from the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) for immediate, effective, and appropriate actions to raise awareness, as well as the critical need to consult and involve people with disabilities in all decision making processes concerning issues relating to persons with disabilities [5].

1.1. Public Disability Representation or Stigma?

Understanding the lived experiences of individuals with disabilities is crucial for addressing disability awareness and public disability representation. Webb [6] (p. 6) defines ‘representation’ as ‘how we experience and communicate ourselves and the world we inhabit, how we know ourselves, and how we deal with others’. Representation encompasses a range of constructs, including knowledge, beliefs, attitudes, value judgements, perceptions, stereotypes, stigmas, and labels. In each instance, an equivalence is claimed between representation and object, between signifier and signified. Shakespeare [7] identified everyday interactions, media, charitable imagery, and popular assumptions as sources of disability representations. Webb [6] contends that representation is relevant not merely as a reflection of reality but as a lens through which people perceive and interpret the world. Representation constructs and influences our understanding of the world. In this study, we use the plural ‘representations’ to denote specific images or depictions in contrast to the singular ‘representation’. ‘Public disability representations’ encompass representations of disabled people, while ‘media disability representations’ focus on how this group is depicted in the media. Furthermore, the terms ‘disabled’ and ‘with a disability’ are utilised interchangeably in this study.

In this context, it is essential to look at the relationship between stigma and representation. Stigma represents deviation from a specific ‘preferred’ characteristic. Goffman [8] (p. 3) defined stigma as an ‘attribute that is profoundly discrediting’, transforming the stigmatised individual from a ‘complete’ and ‘normal’ person into one that is tainted and devalued. It is essential to emphasise that deviance is not an intrinsic characteristic and that individuals should not be labelled as deviant [8] (p. 3). Some four decades later, Link and Phelan [9] revisited this concept, defining stigma as the concurrent presence of labelling, stereotyping, separation, status loss, and discrimination within a power structure that enables such behaviours [9] (p. 382). Their framework conceptualises labelling as identifying socially significant distinctions, with stereotypes representing the cognitive aspect, prejudices representing the affective aspect, and discrimination representing the behavioural aspect (e.g., [3]). These definitions of stigma highlight two key distinctions from representation: (1) stigma is inherently negative, and (2) stigma emerges from power differentials. Goffman [8] and Link and Phelan [9] conceptualise stigma as an undesirable deviation from societal norms, portraying the stigmatisation of people with disabilities by ‘us normals’ as a process of defining them as ‘others’ [10]. Furthermore, stigma presumes the existence of power dynamics [9] (p. 376). Conversely, representation is neither inherently normative nor negative, and it is unrelated to differences in authority. To avoid the inherent negative connotations associated with stigma, this study focusses on examining representation.

1.2. Examining Experienced Public Disability Representation

Previous methods for researching lived experiences of public disability representations include stigma scales, disability models, and media typologies.

1.2.1. Disability Stigma Scales

Researchers have employed disability stigma scales to examine representation experiences among individuals with various disabilities (e.g., [11,12,13]). Incorporating the stigma experiences of individuals with disabilities via qualitative methods was not applied consistently across all scales. Mbuba et al. [13] performed interviews and focus group discussions with individuals with epilepsy to identify relevant issues related to perceived stigma, which guided the development of their perceived stigma scale. Ali et al. [11] took a less in-depth approach by inviting six people with mild to moderate intellectual disabilities to comment on the understandability of stigma statements taken from a literature review and prioritised by professionals. Boyle [12] employed four items to evaluate stigma feelings selected after reviewing multiple disability stigma scales; however, people who stuttered were not consulted.

1.2.2. Disability Models

An alternative to applying stigma scales is obtaining insight into the social positioning of disabled individuals regarding public disability representations through disability models or paradigms. Implicit beliefs influence public disability representations, including internalised representations. Disability models offer a framework for understanding these representations by defining disability, delineating the parties responsible, and outlining strategies for resolution. Four main models, along with their variants, conceptualise disability: the religious, charity, medical, and social models (Table 1). The religious or moral model is historically considered to have preceded the medical model [14]. While the charity model is regarded as a variation or extension of the religious model [15], the social model was developed as a reaction to the medical model [16,17]. According to the religious model, which represents a blend of social, cultural, and religious beliefs [18,19], people with disabilities are either holy and innocent beings [20] or hazardous victims of supernatural forces [19,21,22]. While this model predominantly results in adverse effects for individuals with disabilities, the charity model emphasises their welfare. The specialised care they need is offered as charity [15,23]. The medical model conceptualises disability as primarily an individual medical issue [15,24]. In contrast, the social model argues that people with disabilities are not disabled by their impairments but by the disabling barriers that they face in society [25].

Additional disability models comprise the human rights model of disabilities, as reflected in the UN Convention on the Rights of Persons with Disabilities (UNCRPD) [5], and the biopsychosocial model of disabilities, as reflected in the International Classification of Functioning, Disability and Health (ICF) [26]. In the biopsychosocial model, disabilities are conceptualised as resulting from the interaction between internal personal factors and external environmental factors. By integrating environmental factors, this model bridges the strict separation between the medical and social models. The biopsychosocial model is reflected by the combined occurrence of representations from the medical and social models, with a modest emphasis on the representations from the medical model. In the human rights model, persons with disabilities are conceptualised as rights holders and human rights subjects. Degener [27] argues that the human rights model extends and improves upon the social model; the human rights model is reflected by representations from the social model, with a strong emphasis on disabled persons as human rights holders.

The existing disability models are broadly formulated; they coexist, interrelate, and include overlapping disability concepts [14]. A specific context may prioritise certain aspects of a model over others [14].

Table 1. Four main disability models.

Models
A. The Religious Model People with disabilities are either innocent and holy children of God and deserving of charity [20] or dangerous people whose disabilities are attributed to divine retribution, witchcraft, or evil spirits punishing them for immoral actions or sins committed by the individual, their mothers, or their families [19,21,22]. Remedies are sought from spiritual healers [19]. The individual with the disability displays non-human characteristics or is not considered a real human [21]. This may lead to detrimental actions, including the killing of newborns [18].
B. The Charity Model People with disabilities are eternal children or tragic, depressed victims who need specialised and segregated care and protection because of their helplessness and dependency, offered as charity through religious organisations, concerned citizens, or the government [15,23]. This resulted in the creation of the first ‘madhouses’ and charitable organisations in the 1800s [28], alongside contemporary charity campaigns, collections, and telethons.
C. The Medical Model People with disabilities fail to meet societal standards due to ‘long-term physical, mental, intellectual, or sensory impairments’ [5] (art. 1). They deviate from the norm. The individual bears responsibility for the solution, which may encompass recovery, rehabilitation, or coping strategies. Should this endeavour fail, the individual may be viewed as a pitiful victim of circumstance [28] or a passive one who should have exerted greater effort. If successful, the individual is inspirational.
D. The Social Model People with disabilities are members of groups of people who are disabled by the barriers that they face in society. Inaccessible physical, social, and occupational environments, along with negative attitudes, hinder their equal participation. ‘Social model thinking mandates barrier removal, antidiscrimination legislation, independent living and other responses to social oppression’ [25] (p. 216).

Table 1. Four main disability models.

Models
A. The Religious Model People with disabilities are either innocent and holy children of God and deserving of charity [20] or dangerous people whose disabilities are attributed to divine retribution, witchcraft, or evil spirits punishing them for immoral actions or sins committed by the individual, their mothers, or their families [19,21,22]. Remedies are sought from spiritual healers [19]. The individual with the disability displays non-human characteristics or is not considered a real human [21]. This may lead to detrimental actions, including the killing of newborns [18].
B. The Charity Model People with disabilities are eternal children or tragic, depressed victims who need specialised and segregated care and protection because of their helplessness and dependency, offered as charity through religious organisations, concerned citizens, or the government [15,23]. This resulted in the creation of the first ‘madhouses’ and charitable organisations in the 1800s [28], alongside contemporary charity campaigns, collections, and telethons.
C. The Medical Model People with disabilities fail to meet societal standards due to ‘long-term physical, mental, intellectual, or sensory impairments’ [5] (art. 1). They deviate from the norm. The individual bears responsibility for the solution, which may encompass recovery, rehabilitation, or coping strategies. Should this endeavour fail, the individual may be viewed as a pitiful victim of circumstance [28] or a passive one who should have exerted greater effort. If successful, the individual is inspirational.
D. The Social Model People with disabilities are members of groups of people who are disabled by the barriers that they face in society. Inaccessible physical, social, and occupational environments, along with negative attitudes, hinder their equal participation. ‘Social model thinking mandates barrier removal, antidiscrimination legislation, independent living and other responses to social oppression’ [25] (p. 216).

1.2.3. Disability Media Typologies

To better understand how disabled people are portrayed by the media, scholars have developed various typologies of disability representations (e.g., [29,30]). Barnes approached this issue from an insider perspective. His study originated from an increasing awareness among people with disabilities that the obstacles that they encounter are a result of institutional discrimination and that the media’s misrepresentation of disability plays a substantial role in perpetuating this discrimination [31] (p. 5). Barnes’ analysis led to a typology of 11 commonly recurring media stereotypes [31]. Clogston [32] utilised the medical and social models to distinguish between traditional and progressive typologies. Haller [33,34] later refined these typologies, resulting in the Clogston–Haller framework, which identifies eight distinct media representations. Building on the Clogston–Haller approach, other scholars have developed similar typologies in their studies of media disability representation (e.g., [2,35]).

1.3. Research Aim

The Clogston–Haller media typologies have been widely used to analyse how disability is represented in the media, both as perceived by the general public (e.g., [35,36]) and by people with disabilities (e.g., [37,38]). Barnes, a disabled scholar himself, developed his typologies through collaboration with a research advisory group of disabled people who shared their insights and experiences. Nonetheless, research on the lived experiences of individuals with disabilities concerning public disability representation has remained scarce. Although stigma scales offer valuable quantitative insights into the stigma faced by individuals with disabilities, they fail to fully capture the nature of public disability representations as experienced by this group. Although the four disability models and their variations encompass a broad range of general disability representations, their contribution to understanding the lived experiences of public disability representations remains unclear. Similarly, while the Clogston–Haller typologies provide well-defined frameworks, their predetermined structures may offer only a limited perspective on how individuals with disabilities experience public representations. The extent to which these models and typologies truly capture these experiences remains ambiguous. This scoping review addresses this gap by examining qualitative, peer-reviewed research on public disability representations experienced by people with disabilities. A comprehensive understanding of the multifaceted representation experiences of individuals with disabilities requires examination from multiple perspectives. Therefore, this exploratory scoping review will analyse the studies from three distinct perspectives. We examine the alignment of these studies with the four disability models, evaluate their alignment with the Barnes and Clogston–Haller media typologies, and explore the construction of alternative themes that better reflect lived experiences.

2. Methods

2.1. Study Design and Theoretical Framework

We conducted this scoping review following the PRISMA Extension for Scoping Reviews (PRISMA ScR) checklist [39]. Scoping reviews are useful for identifying the extent of research conducted on a given topic and the current understanding of that topic [40]. The methodology employed was based on scoping review steps outlined by Arksey and O’Malley [41] and refined by Levac et al. [42] and Peters et al. [43]. The Arksey and O’Malley framework suggests five steps when performing scoping reviews: (1) identifying research questions; (2) identifying relevant studies; (3) selecting studies; (4) charting the data; and (5) collating, summarising, and reporting the results.

2.2. Identifying Research Questions

The purpose of our study was to investigate how people with disabilities experience public disability representations. To fulfil this aim, we addressed the following research questions. (1) To what extent are the experienced representations observed in the studies reflected in the four disability models (religious, charity, medical, and social) (Table 1)? (2) To what extent are the experienced public disability representations observed in the studies reflected in Barnes’s and Clogston–Haller’s traditional or contemporary media typologies (

Table 2. Overview of revised major media disability typologies.

Barnes Stereotypes	Clogston–Haller Models
Traditional Typologies People with disabilities are viewed as dysfunctional, and their disability-related limitations are attributed to them as individuals.
1. Burden People with disabilities are helpless and must be ‘cared’ for by non-disabled people.	1. Medical People with disabilities have an illness or malfunction that results in a dependent and passive state.
2. Incapable of Participating Fully in Community Life People with disabilities are dispensable and unproductive members of the community who should be segregated.	2. Social Pathology People with disabilities are disadvantaged clients who rely on the government or society for economic support.
	3. Business People with disabilities and their accessibility are costly to both society and businesses.
3. Super Cripple People with disabilities have ‘super’ qualities and, therefore, should be respected.	4. Supercrip People with disabilities are superhuman or amazing, suggesting that the individual’s achievements are remarkable for someone who is incomplete.
4. Atmosphere or Curio People with disabilities are dehumanised objects of curiosity.
5. Object of Ridicule People with disabilities are hapless fools.
6. Object of Violence People with disabilities are subject to violent abuse by non-disabled people.
7. Pitiable and Pathetic People with disabilities are endearing and elicit feelings of sentimentality.
8. Sexually Abnormal People with disabilities are sexually dead, and, therefore, their lives are not worth living.
9. Sinister and Evil People with disabilities are violent, wicked, sinners, or villains.
10. Their Own Worst and Only Enemy People with disabilities are self-pitiers who might overcome their difficulties if they stop feeling sorry for themselves, think positively, and rise to ‘the challenge’.
Contemporary Typologies The most limiting aspect of a person’s disability is society’s inability to adapt its physical, social, and occupational environments, as well as its attitudes.
11. Normal People with disabilities are individuals who just happen to have impairments.	5. Cultural Pluralism People with disabilities are multifaceted individuals whose disability is only one of many facets.
	6. Minority/Civil Rights People with disabilities are members of a minority group with political grievances.
	7. Legal People with disabilities are individuals with legal rights who may need to file a lawsuit to stop discrimination.
	8. Consumer People with disabilities are an untapped consumer group.

Note: adopted from Barnes [31], Clogston [32], and Haller [33,34]. In this study, we use the more neutral term ‘contemporary’ instead of Clogston–Haller’s ‘progressive’.

)? (3) What alternative themes could better capture experienced public disability representations?

2.3. Identifying Relevant Studies

The search terms were structured to define relevant population characteristics and core concepts [43]. The study population included individuals with disabilities, with no restrictions on disability type. Regarding core concepts, studies needed to focus on experienced public disability representation, including examinations of stereotypes and stigma.

Because a pilot literature search showed that studies referring to a specific disability sometimes lacked the terms ‘handicap’ or ‘disability’, the following search terms were also employed: ‘autism’, ‘blind’, ‘brain injury’, ‘cerebral palsy’, ‘cleft lip and palate’, ‘deaf’, ‘Down syndrome’, ‘epilepsy’, ‘muscular dystrophy’, ‘osteogenesis imperfecta’, ‘poliomyelitis’, ‘restricted growth’, ‘spina bifida’, ‘spinal cord injury’, and variations thereof. For public disability representation, the search terms included ‘representation’, ‘stereotype’, ‘stigma’, ‘attitude’, and variations thereof. The search terms ‘experienced’, ‘perceived’, and variations thereof were combined, in addition to ‘experience of disability’.

On 30 July 2024, we conducted a structured search across six databases: PubMed (including Medline), Scopus, ProQuest (Sociological Abstracts), OVID (APA and Eric), EBSCO (Academic Search Premier), and Web of Science (Core Collection). Search platforms vary in functionality, requiring slight adjustments to our search methods while maintaining consistency. Google Scholar was used as a supplementary source, with separate searches conducted for each disability type. Given the search engine’s declining accuracy beyond the initial pages, we limited our analysis to the first 75 results [44]. Additionally, we performed citation tracking and reference checking for the included studies.

2.4. Study Selection

Original qualitative research studies exploring the experienced public disability representation of people with disabilities published in English-language articles between January 1948 and July 2024 were eligible for inclusion (

Table 3. The inclusion and exclusion criteria.

Inclusion Criteria

Population: People with disabilities. Experience: Public disability representation (e.g., attitudes, metaphors, perceptions, prejudices, stereotypes, and stigmas). Type of study: Original, qualitative research. English-language article. Peer-reviewed. Published between January 1948 and July 2024.

Exclusion Criteria

Studies not analysing experienced public disability representations. Studies not classifying experienced public disability representations.

). Studies employing mixed methods were included if the qualitative component was reported separately from the quantitative findings. Studies that failed to analyse public disability representations or classify and label these representations were excluded.

The prolonged period from 1948 to 2024 was selected due to the apparent scarcity of research on public disability representation as experienced by people with disabilities. This prolonged search period increases the likelihood of capturing a substantial number of relevant studies. The conclusion of World War II, including the return of disabled veterans, initiated global reconstruction efforts, encompassing improvements in care and services for individuals with disabilities. The year 1948 marked the publication of the Universal Declaration of Human Rights (UDHR) [45]. Given the review’s focus on lived experiences, we analysed qualitative findings, as qualitative research provides an in-depth and contextual understanding of individuals’ experiences, lives, and social environments. To ensure a minimum level of quality, only peer-reviewed journal studies were included.

Figure 1 shows a flowchart of the process of identifying and selecting relevant studies. In the identification phase, records were identified and imported into RefWorks, where duplicates were excluded. The first author screened the titles and abstracts of the remaining records for relevance, considering the inclusion criteria. In case of uncertainty, the records were retained. The remaining full-text studies were assessed based on inclusion and exclusion criteria by the first author. In cases of ambiguity concerning inclusion or exclusion, the second author was consulted, resulting in a joint decision by both authors. The review and selection processes were discussed by the three authors.

2.5. Charting the Data

Our analysis focused on the sections where researchers analysed, classified, and labelled the public disability representation experiences of their participants. Excel was used to create data charting tables [43] containing key information about the included studies, such as country characteristics [46], methodologies, participant characteristics, and summaries of the findings.

2.6. Collating, Summarising, and Reporting the Results

We present the primary features of the included studies, including disability types, research methods, geographical locations, and core concepts, in both a tabular format and a concise narrative account. Using qualitative data analysis software (ATLAS.ti version 9.1.7.0), we also conducted both deductive and inductive thematic analyses of the sections detailing reported experiences with public disability representation. Thematic analysis was employed deductively [47] to evaluate the extent to which the four disability models (Table 1) and the Barnes and Clogston–Haller typologies (Table 2) were reflected in the studies. The models and typologies served as themes; the media representations served as subthemes.

The six-stage inductive approach outlined by Terry et al. [48] was employed to construct alternative themes. (1) After having selected the relevant passages during the deductive analysis process, the first author reread the articles and noted initial codes and themes. This resulted in 325 quotations. (2) The first author employed open coding to develop and modify the codes during the coding process. (3) Subsequently, the first author identified 26 initial themes by sorting the codes into thematic groups. The first and second authors discussed these initial themes and relevant quotations, leading to the construction of three preliminary main themes: (1) feeling misconceived due to a lack of knowledge; (2) feeling underestimated due to low expectations; and (3) feeling dehumanised due to experienced representations of not belonging. (4) A discussion among all authors was conducted to refine the final coding framework, which was based on the initial codes, their interrelationships, and how they indicated underlying public disability representation experiences. (5) The three authors refined and renamed the subsequent main themes and sub-themes. A thematic map was developed to illustrate the three interrelated primary themes: (1) experiencing ignorance, (2) experiencing assumed limited capabilities, and (3) experiencing otherness. The three themes are interrelated and iterative. (6) The last stage involved producing the review, which encompassed the final analysis, the selection of pertinent quotations to illustrate the findings, and the composition of the article. Findings and interpretations of the analysis outcomes are presented below.

3. Results

In this section, we present (1) the selection of studies, (2) the methodological characteristics of the studies, and (3) the findings of the studies regarding experienced public disability representation.

3.1. Selection of the Studies

The initial search yielded 17,626 abstracts, to which abstracts of three articles identified from citation tracking and reference checking were added; furthermore, 4101 of these were duplicates and excluded. The remaining 12,178 studies were screened for relevance based on the title and type of study, and 11,307 were excluded. After screening the abstracts of 871 studies, 764 were excluded. We then assessed the full text of the remaining 107 studies for eligibility, and 75 were excluded, primarily because they did not analyse public disability representations experienced by people with disabilities. The 32 studies that met all inclusion requirements were included in the analysis (Figure 1).

3.2. Characteristics of the Studies

The 32 selected studies covered 16 countries, including 19 studies from high-income countries, such as the United States (n = 8) and the United Kingdom (n = 5) (

Table 4. The characteristics of the studies.

Author (Year)	Country	World Bank Country Classification	Disability Type	Female/Male	Age Range	Education/SES	Background	Data Instruments	Method of Analysis	Perspective	Core Concepts (Terms to Denote Public Disability Representation)
Admi and Shaham (2007) [49]	Israel	High Income	Epilepsy	11/3	15–24	Varying Education and SES		Non-Directed and Directed Interviews	Constant Comparison Method		Perception, Stigma
Andregård and Magnusson (2016) [50]	Sierra Leone	Middle–Low Income	Physical Disability	3/9	18 and above	Varying Education and SES	Varying Ethnic Groups; Muslim (n = 4), Christian (n = 8)	Semi-Structured Interview	Qualitative Content Analysis		Attitude, Belief
Arias-Urueña et al. (2024) [51]	Colombia	Middle–Low Income	Cleft Lip a/o Palate	7/5	6–12 (m = 9)	Low–Middle Class		Semi-Structured Interview, Field Notes	Thematic Analysis Following Theoretical Frameworks		Label, Stereotype, Stigma
Babamohamadi et al. (2011) [52]	Iran	Middle–Low Income	Spinal Cord Injury	10/8	19–63 (m = 37)		Muslim	Semi-Structured Interview	Qualitative Content Analysis	Coping	Attitude, Belief, Knowledge
Bagatell et al. (2017) [53]	USA	High Income	Cerebral Palsy	9/4	19–33 (m = 26)	Varying Education and SES	Caucasian (n = 8), Multiracial (n = 1)	Focus Group	Thematic Inductive Analysis	Transition to Adulthood	Perception, Prejudice, Stereotype
Barbareschi et al. (2021) [54]	Kenya	Middle–Low Income	Mixed (1)	3/3				Structured Interview	Thematic Inductive Analysis	Assistive Technology	Conception, Stereotype, Stigma
Botha et al. (2022) [55]	United Kingdom	High Income	Autism	9/9 + Non-Binary (n = 2)	21–62 (m = 37)		Varying Backgrounds (2)	Interview	Thematic Inductive Analysis		Meaning, Stereotype, Stigma, Understanding
Buljevac et al. (2012) [56]	Croatia	High Income	Mixed (3)	3/2	22–48	Varying Education and SES		Focus Group	Qualitative Content Analysis		Attitude, Label, Perception, Prejudice, Stereotype, Stigma, Understanding
Butler and Bowlby (1997) [57]	United Kingdom	High Income	Visual Disability	16/4	16 to over 80	Varying Education and SES	White (n = 20)	Interview		Public Space	Attitude, Conception
Carew et al. (2024) [58]	Sierra Leone	Middle–Low Income	Mixed (4)	32/0				Semi-Structured Interview	Thematic Analysis (Top–Down)	Sexual Health	Attitude, Belief, Stigma
Coleman et al. (2022) [59]	Australia	High Income	Epilepsy	194/149 (5)	2–86 (m = 43; sd = 18.84; missing (n = 5)	Varying Education and SES		Survey (Analysis of Free-Text Responses)	Mixed Methods (Thematic Content Analysis)	Social Support	Stigma, Understanding
Dako-Geyeke and Donkor (2018) [60]	Ghana	Middle–Low Income	Epilepsy	7/7	20–55	High School or Lower	Christian (n = 13), Muslim (n = 1)	Interview	Thematic Inductive Analysis		Belief, Stigma, View
de Klerk and Ampousah (2003) [61]	South Africa	Middle–Low Income	Physical Disability	40/0	21–60	Predominantly Middle-Income	White (n = 28), Black (n = 12)	Semi-Structured Interview	Interpretative Phenomenological Analysis	Personal Appearance	Perception
Dean and Medina (2021) [62]	USA	High Income	Stuttering	4/3	Adults	Varying Education and SES	Hispanic or Latino	Semi-Structured Interview	Thematic Inductive Analysis		Stigma
Goodwin et al. (2004) [63]	USA	High Income	Physical Disability	7/7	14–24 (m = 19)	Varying Education and SES	Caucasian	Semi-Structured Interview, Artefacts, Field Notes	Thematic Analysis	Physical Activities	Meaning, Metaphor, Perception, Stigma
Hansen et al. (2017) [64]	Canada	High Income	Visual Disability	7/0	Early twenties to over sixty		Varying Regions of Origin (6)	Semi-Structured Interview	Thematic Analysis	Immigration	Attitude, Meaning, Understanding
Hosseini et al. (2013) [65]	Iran	Middle–Low Income	Epilepsy					Unstructured and Semi-Structured Interviews	Qualitative Content Analysis		Perception, Perspective, Stigma
Kılınç and Campbell (2009) [66]	United Kingdom	High Income	Epilepsy	52 (undisclosed)				Structured Interview			(Mis)conception, Knowledge, Stigma
Lang et al. (2022) [67]	Germany	High Income	Epilepsy	152/0	19–83 (median = 40)			Online Survey (Analysis of Open Questions)	Mixed Methods (Data Clustering)		Attitude, Prejudice, Stigma
Lash and Helme (2020) [68]	USA	High Income	Hearing Disability	12/18	18–79 (m = 53; sd = 17.6)	Student (n = 2), Other (n = 28)	Caucasian/White (n = 28), Hispanic (n = 1), African American (n = 1)	Interactive Qualitative Interview	Thematic Inductive Analysis		Attitude, Perception, Stigma
Löfvenmark et al. (2016) [69]	Botswana	Middle–Low Income	Spinal Cord Injury	5/8	16–60	Varying Education and SES		Semi-Structured Interview, Participant Observation	Thematic Inductive Analysis		Attitude, Perspective, Stigma
Louw (2022) [70]	South Africa	Middle–Low Income	Paraplegia	0/15	27–50	Varying Education and SES	Coloured (n = 15)	Photovoice	Thematic Inductive Analysis		Perception, Representation
Malli and Forrester-Jones (2022) [71]	United Kingdom	High Income	Tourette’s Syndrome	6/14	20–71 (m = 33.5)		White British (n = 19)	Survey, Interview	Mixed Methods (Interview: Thematic Inductive Analysis)		Stigma
Nickbakht et al. (2024) [72]	Australia	High Income	Hearing Disability	7/13	53–88			Semi-Structured Interview		Hearing Loss and Hearing Aids	Perception. Perspective, Stereotype, Stigma
Nochi (2008) [73]	USA	High Income	Traumatic Brain Injury	Interview: 2/8; Informant: 8/5	Interview: 24–54 (m = 37.9; sd = 11); Informant: 26–61 years			Semi-Structured Interview, Email, Participant Observation	Thematic Inductive Analysis	Terminology	Label, Meaning
O’Connell (2021) [74]	Ireland	High Income	Hearing Disability	3/5	35–57 (m = 49.6; sd = 6.7)	Varying Education and SES		Unstructured and Semi-Structured Interviews	Thematic Inductive Analysis	Transition to Employment	Prejudice, Stereotype, Stigma
Ocran (2022) [75]	Ghana	Middle–Low Income	Mixed (7)	5/11		Middle-Class		In-Depth Interview	Interpretative Phenomenological Analysis		Social Expectation, Stigma
Phillips (1990) [76]	USA	High Income	Physical Disability	20/13	21 to early 60s	Varying Education and SES	Caucasian (n = 27), Racially Mixed (n = 2), Missing (n = 4) (8)	Informal Interview	Cultural Analysis		Notion, Perception
Reber et al. (2022) [77]	USA	High Income	Physical Disability	24/26	23–75 (m = 52)	Varying Education and SES	Black (n = 31), White (n = 16), Hispanic or Biracial (n = 3)	Focus Group, Interview	Thematic Inductive Analysis	Healthy Ageing	Attitude, Stigma
Schneider and Conrad (1980) [78]	USA	High Income	Epilepsy	’Roughly equally’	14–54			Interview		Coping	Perception, Stigma
Shamrock et al. (2016) [79]	Timor Leste	Middle–Low Income	Physical Disability	2/6	20–52 (m = 32)	Varying Education and SES		Photovoice	Thematic Inductive Analysis	Employment in Disability Sector	Attitude, Stigma
Treweek et al. (2019) [80]	United Kingdom	High Income	Autism	5/8	20–63 (M = 37.3; SD = 15.0)			Semi-Structured Interview	Interpretative Phenomenological Analysis		Stereotype

^1. Mixed: hearing disability (n = 2), physical disability (n = 2), and visual disability (n = 2). ² Varying backgrounds: White British (n = 13); Black British (n = 1); White other from Europe, America, Israel, or New Zealand (n = 5); mixed-race South American (n = 1). ³ Mixed: visual disability (n = 3) and physical disability (n = 2). ⁴ Mixed: physical disability (n = 30) and visual disability (n = 2). ⁵ Respondents: persons with epilepsy (n = 247) and on behalf of a person with epilepsy (n = 52). ⁶ Varying regions of origin: Middle East, including South Asia (n = 4); Africa (n = 1); Europe/Caribbean (n = 1); Europe/South America (n = 1). ⁷ Mixed: hearing disability (n = 3), visual disability (n = 2), partial speech impairment (n = 1), physical disability (n = 8), and both physical and visual disability (n = 2). ⁸ Racially mixed; reared in a predominantly Caucasian environment.

). The number of studies increased from 4 published between 1980 and 2000 to 4 between 2001 and 2010, 11 between 2011 and 2020, and 13 studies in the past four years. The studies included participants with various disabilities, such as physical disabilities (n = 14), sensory disabilities (n = 9), and epilepsy (n = 7). Four studies examined mixed disabilities. Studies on the experiences of people with intellectual disabilities were lacking. The ages of the sample participants ranged from 6 to 88 years. Participants varied in socioeconomic status (SES) and education level. No studies compared the experiences of disability representations among distinct groups of individuals with disabilities.

3.3. Public Disability Representation Experiences

Half of the studies examined the public disability representation experiences from a specific perspective. For example, two studies examined disability representations and coping [52,78], two examined representation experiences and assistive devices [54,72], and two examined representation experiences in the context of work [74,79].

The term ’stigma’ appeared in 22 studies. Alongside ’stigma’, 16 additional core concepts were utilised. Eleven studies used ’perception’ and ’attitudes’, while eight used ’stereotype’. A total of 28 studies used multiple core concepts.

The studies examined and clustered the disability representations as experienced by participants across various perspectives. While some studies provided detailed explanations with numerous examples, most presented relatively succinct descriptions of the clustered representations. Consequently, a direct comparison of the findings was not feasible. Therefore, as outlined in Section 2.5, we conducted both deductive and inductive thematic analyses of the relevant sections from the selected studies, in which researchers analysed, classified, and labelled participants’ experiences of public disability representation.

3.3.1. Deductive Thematic Analysis

The deductive analysis indicated that 31 out of 32 studies included one or more experienced disability representation that could be classified into the medical model (

Table 5. Experienced public disability representations classified by disability models.

	Disability Models
	Religious	Charity	Medical	Social
Admi and Shaham (2007) [49]			x
Andregård and Magnusson (2016) [50]	x		x
Arias-Urueña et al. (2024) [51]			x
Babamohamadi et al. (2011) [52]			x
Bagatell et al. (2017) [53]			x
Barbareschi et al. (2021) [54]	x		x
Botha et al. (2022) [55]			x
Buljevac et al. (2012) [56]		x	x
Butler and Bowlby (1997) [57]		x	x
Carew et al. (2024) [58]	x		x
Coleman et al. (2022) [59]	x		x
Dako-Geyeke and Donkor (2018) [60]	x		x
de Klerk and Ampousah (2003) [61]			x
Dean and Medina (2021) [62]	x		x
Goodwin et al. (2004) [63]		x	x
Hansen et al. (2017) [64]			x
Hosseini et al. (2013) [65]	x		x
Kılınç and Campbell (2009) [66]			x
Lang et al. (2022) [67]		x	x
Lash and Helme (2020) [68]			x
Löfvenmark et al. (2016) [69]	x		x
Louw (2022) [70]			x
Malli and Forrester-Jones (2022) [71]		x	x
Nickbakht et al. (2024) [72]			x
Nochi (2008) [73]		x	x
O’Connell (2021) [74]			x
Ocran (2022) [75]	x		x
Phillips (1990) [76]		x	x
Reber et al. (2022) [77]			x
Schneider and Conrad (1980) [78]	x		x
Shamrock et al. (2016) [79]	x
Treweek et al. (2019) [80]			x

Note: The symbol x denotes that representations in the study corresponded with a particular disability model.

). Eleven studies included representations aligned with the religious model, while seven studies featured representations aligned with the charity model. None of the studies included representations that aligned with the social model.

Representations aligned with the charity model were predominantly found in studies from high-income countries, whereas those aligned with the religious model were more common in studies from low- and middle-income countries. No major differences were observed across studies based on disability type.

Following the frameworks of Barnes [31], Clogston [32], and Haller [33,34], two overarching typologies of media disability representations were identified: traditional and contemporary (

Table 6. Experienced public disability representations classified by media disability representation typologies.

Media Disability Typologies
	Traditional													Contemporary
	Medical	Social Pathology	Supercrip/Super Cripple	Business	Object of Ridicule	Object of Violence	Atmosphere or Curio	Burden	Incapable of Participating Fully in Community Life	Pitiable and Pathetic	Sexually Abnormal	Sinister and Evil	Their Own Worst and Only Enemy	Minority/Civil Rights	Legal	Cultural Pluralism/Normal	Consumer
Admi and Shaham (2007) [49]												x
Andregård and Magnusson (2016) [50]		x						x	x			x
Arias-Urueña et al. (2024) [51]	x
Babamohamadi et al. (2011) [52]										x
Bagatell et al. (2017) [53]			x						x		x
Barbareschi et al. (2021) [54]	x									x		x
Botha et al. (2022) [55]												x
Buljevac et al. (2012) [56]	x	x						x	x	x	x
Butler and Bowlby (1997) [57]	x							x	x	x
Carew et al. (2024) [58]									x		x	x
Coleman et al. (2022) [59]									x			x
Dako-Geyeke and Donkor (2018) [60]	x											x
de Klerk and Ampousah (2003) [61]										x
Dean and Medina (2021) [62]						x			x			x				x
Goodwin et al. (2004) [63]	x		x					x		x
Hansen et al. (2017) [64]	x							x	x							x
Hosseini et al. (2013) [65]	x								x	x		x
Kılınç and Campbell (2009) [66]												x
Lang et al. (2022) [67]	x								x			x
Lash and Helme (2020) [68]										x
Löfvenmark et al. (2016) [69]									x			x				x
Louw (2022) [70]	x							x	x		x
Malli and Forrester-Jones (2022) [71]					x	x	x			x
Nickbakht et al. (2024) [72]	x								x
Nochi (2008) [73]	x							x
O’Connell (2021) [74]	x			x				x	x
Ocran (2022) [75]		x							x	x	x					x
Phillips (1990) [76]	x							x	x	x	x		x
Reber et al. (2022) [77]	x			x												x
Schneider and Conrad (1980) [78]												x				x
Shamrock et al. (2016) [79]	x	x						x	x			x
Treweek et al. (2019) [80]												x

Note: The symbol x denotes that representations in the study corresponded with a particular media typology.

). A deductive analysis revealed that all 32 studies included one or more representations aligned with traditional typologies, while only 6 studies featured representations aligned with contemporary typologies. Traditional typologies encompassed the following representations:

• ‘Incapable of Participating Fully in Community Life’ (n = 17) [50,53,56,57,58,59,62,64,65,67,69,70,72,74,75,76,79], e.g., ‘The traditional view of disability in Timor Leste is that a person with disabilities cannot be independent, work, marry and have a family or travel’ [79].
• ‘Medical’ (n = 16), which suggests illness or dysfunction resulting in dependency and passivity [51,54,56,57,60,63,64,65,67,70,72,73,74,76,77,79], e.g., ‘Epilepsy is a contagious disease: “Some didn’t even shake hands to say hello because they thought it was contagious”’ [67].
• ‘Sinister and Evil’ (n = 15) [49,50,54,55,58,59,60,62,65,66,67,69,78,79,80], e.g., ‘According to the participants, Sierra Leoneans traditionally believe either that people with disabilities are devils in human bodies or that the disability has been caused by witchcraft’ [50].
• ‘Pitiable and Pathetic’ (n = 11), ‘Feelings of sorry or pity are a common type of stigma surrounding hearing loss according to participants—a reaction that participants indicated strongly disliking’ [68].
• ‘Burden’ (n = 10), indicating that individuals are presumed to be unable to cope independently [50,56,57,63,64,70,74,76,79], e.g., ‘The other half of participants experienced being rejected by family, most commonly in an early stage of disability, when they were seen as a burden and as someone who was unable to contribute to the family’s daily living’ [50].

In contrast, alongside the frequently referenced traditional representations mentioned previously, there were also less frequently observed traditional representations. These include the ‘Social Pathology’ representation (n = 4), which relates to reliance on governmental or societal economic support [50,56,75,79], the ‘Super Cripple/Supercrip’ representation (n = 2) [53,63], and the ‘Business’ representation (n = 2), which relates to economic costs, including accessibility and inclusion [74,77]. The contemporary typology included only the ‘Cultural Pluralism/Normal’ representation (n = 6) [62,64,69,75,77,78], which portrays individuals with disabilities as multifaceted persons, with disability being just one aspect of their identity. ‘When the actions of organizations and institutions enhanced participants’ access to resources, participants perceived societal attitudes as “understanding”. The sense of inclusion this created made participants feel accepted, supported, and valued as members of society’ [77].

No major differences were observed in the presence of the four models and the typologies between studies from high-income and low- to middle-income countries, nor across studies examining different disability types.

3.3.2. Inductive Thematic Analysis

The inductive thematic analysis of clustered experiences of public disability representations resulted in the construction of three interrelated themes: (1) experiencing ignorance, (2) experiencing assumed limited capabilities, and (3) experiencing otherness (

Table 7. Thematic classification of experienced public disability representations.

Experienced Public Disability Representations
	Ignorance										Limited Capabilities									Otherness
	Ignorance About the Disability (General)	Causes	Cures	Illness	Contagiousness	Ignorance About People with disabilities (General)	Disability ‘Spreads’	Main Distinguishing Feature/Distinguishing Characteristic	Homogeneous Group	Assuming the Most Severe Disability	Incapable (General)	Dependent	Physically Less Capable	Non-Verbal	Intellectually Less Capable	Educationally Less Capable	Occupationally Less Capable	Unable to Travel	No ‘Adult’ Needs	Pitiful	Inspirational	Imposters	Possessing a ‘Bad’ Trait	Devalued Social Identity	Exclusion (General)	An Individual Human Being
Admi and Shaham (2007) [49]	X																						X		X	X
Andregård and Magnusson (2016) [50]	X	o			o											X	X						X	X	X	X
Arias-Urueña et al. (2024) [51]	X			o																				X	X	X
Babamohamadi et al. (2011) [52]	X					X		o			X						X			X					X
Bagatell et al. (2017) [53]											X				o				X	X	o			X	X
Barbareschi et al. (2021) [54]	X	o	o		o	X		o												X					X
Botha et al. (2022) [55]	X	o		o							X			o								X	X		X
Buljevac et al. (2012) [56]	X			o		X		o			X	o				X	X		X	X		X			X
Butler and Bowlby (1997) [57]						X	o	o	o		X	o		o	o					X		X	X		X
Carew et al. (2024) [58]	X	o									X	o					X		X				X	X	X
Coleman et al. (2022) [59]	X					X		o			X				o								X		X
Dako-Geyeke and Donkor (2018) [60]	X	o			o												X		X				X
de Klerk and Ampousah (2003) [61]											X				o					X					X
Dean and Medina (2021) [62]	X	o	o								X	o			o	X	X						X		X	X
Goodwin et al. (2004) [63]	X			o		X		o			X	o								X					X
Hansen et al. (2017) [64]											X	o					X								X	X
Hosseini et al. (2013) [65]	X	o		o	o						X	o			o					X			X	X	X	X
Kılınç and Campbell (2009) [66]	X
Lang et al. (2022) [67]	X	o	o		o	X	o			o	X	o			o	X	X	o	X			X	X	X
Lash and Helme (2020) [68]	X					X	o				X		o		o					X		X		X	X
Löfvenmark et al. (2016) [69]	X	o	o									o					X							X	X	X
Louw (2022) [70]						X	o	o			X	o					X		X					X	X
Malli and Forrester-Jones (2022) [71]	X	o			o															X					X
Nickbakht et al. (2024) [72]											X	o			o									X		X
Nochi (2008) [73]											X	o			o							X	X		X
O’Connell (2021) [74]																	X							X
Ocran (2022) [75]						X	o		o		X	o	o		o	X	X	o	X	X					X	X
Phillips (1990) [76]	X			o		X	o				X	o				X	X		X	X				X	X
Reber et al. (2022) [77]	X	o			o												X						X	X	X	X
Schneider and Conrad (1980) [78]	X																						X	X		X
Shamrock et al. (2016) [79]	X	o									X	o					X	o	X						X
Treweek et al. (2019) [80]						X			o													X			X

Note: The main subthemes are represented by X. Examples of minor subthemes, which constitute elements of the main sub-themes, are represented by o.

). The three themes are interrelated and iterative (Figure 2).

Experiencing Ignorance

The theme of experiencing ignorance reflects experiences of ignorance about disabilities or about people with disabilities in public disability representations. Individuals with disabilities often find public representations inaccurate, as inaccuracy arises from widespread misconceptions or a lack of adequate knowledge about disabilities or about people with disabilities. This ignorance encompassed the causes, cures, and characteristics of the disability. Disability was regarded as an illness [51,55,56,63,65,76]. Ignorance about causes [50,54,55,58,60,62,65,67,69,71,77,79] included vaccinations [50,55,58], divine punishment [69,79], and curses or witchcraft [54,58,69], while some participants said they ‘experienced being rejected because non-disabled people thought the disability was contagious’ [50,54,60,65,67,71,77]. Misconceptions about cures were also addressed [54,62,67,69], as in the following: ‘A person having an epileptic seizure needs to have something hard in the mouth as bite wedge’ [67]; ‘It was common to visit traditional healers post-injury, which informants turn to mainly due to pressure by their family or friends, or to show respect to their parents’ [69]. Common misconceptions regarding people with disabilities encompassed the notion that these individuals constitute a homogeneous group [57,75,80], the assumption that disability serves as the main distinguishing feature of a person [52,54,56,57,59,63,70], and the belief that disability spreads [57,67,68,70,75,76]. One study reported: ‘A man remarked on the tendency not only to treat visually impaired people as stupid but as if they are all ‘the same’; that is, to focus only on their disability: “If you’re in a group of blind people you’re treated as if you all have the same IQ [intelligence quotient] as the most backward member of the group”’ [57]. In total, 26 out of 32 studies mentioned experiences of ignorance.

Experiencing Assumed Limited Capabilities

The theme of limited capabilities pertained to undervaluing the capabilities of individuals with disabilities, often in tandem with expressions of ignorance. Examples included dependency, academic and professional inabilities, and an inability to address ‘adult needs’. People with disabilities were assumed to be unable to cope independently [56,57,58,62,63,64,65,67,69,70,72,73,75,76,79] because, among other characteristics, they are powerless [73], helpless [65,73,76], or need protection [56,57,75]. An assumed lack of intelligence [53,57,59,61,62,65,67,68,72,75] was mentioned, as well as educational incapabilities [50,56,62,67,75,76]. Being less able or even unable to work professionally [50,52,56,58,60,62,64,67,69,70,74,75,76,77,79] became apparent in representations of people with disabilities as beggars [50,52,75], unskilled [74,75], incapable of working under pressure [67], or not being able to travel [67,75,79]. One study highlighted that ‘Participants experienced being rejected by family, most commonly in an early stage of disability, when they were considered a burden, being unable to contribute to the family’s daily living’ [50]. References to asexuality [53,56,70,75], recommendations against marriage [53,56,60,75,76,79], and perceptions of incapacity for parenting [53,56,67,75] all underscored assumed failures to meet ‘adult’ needs [53,56,58,60,67,70,75,76,79]. As reported in one study, ‘Additionally, and most upsetting for focus group participants, was the lack of acknowledgment of “adult needs and adult desires”, as John eloquently stated. The desire to date, have an intimate relationship, marry, and have children was often glossed over by practitioners, thus denying an important aspect of adulthood”’ [53]. A total of 25 out of 32 studies mentioned experiences of assumed limited capabilities.

Experiencing Otherness

The theme of experiencing otherness reflects that individuals with disabilities frequently encounter dehumanising representations that position them as ‘the other’. Representations of otherness were frequently mentioned in combination with ignorance and assumptions about limited capabilities. Instances of ‘otherness’, placing individuals with disabilities on the fringes of society, encompassed representations of pitiable individuals [52,53,54,56,57,61,63,65,68,71,75,76], imposters [55,56,57,67,68,73,80], possessing a ‘bad’ trait [49,50,55,57,58,59,60,62,65,67,73,77,78], devalued social identities [50,51,53,58,65,67,68,69,70,72,74,76,77,78], or exclusion [49,50,51,52,53,54,55,56,57,58,59,61,62,63,64,65,67,68,69,70,71,73,75,76,77,79,80]. Babamohamadi et al. [52] characterised the pity representation in terms like ‘pathetic’ and ‘doomed’, Bagatell et al. [53] used the term ‘inspirational’, as did Ocran [75], as follows: ‘For most of the participants, an important manifestation of disability stigma lies in the show of unsolicited pity and sympathy towards them. … Their rejection of the sympathy lies in their awareness that people tend to have lowered expectations for persons with disability’. The imposter representation corresponded with perceptions of fraudulence that emerge from challenging disability stereotypes, including being blind and attending grammar school or misusing welfare [56]. One study reported ‘Some of the interviewees … had found that their competence in public was interpreted as evidence that they were “frauds”’ [57]. The possession of a ‘bad’ trait was linked to individuals with disabilities being perceived as troublemakers [58], violent [55], dangerous [49,55,67], or evil [50,59,78]. Depictions of devalued social identity included notions of inferiority [50,53,65,67,69,70,72,77], damaged goods [76], or garbage [70]. References to being perceived as abnormal [56,57,61,63,64,68,71,76,80], not regarded as human beings [50,55,67,70,75,77], viewed as something to be hidden [69,76], and other instances exemplified the representation of ‘not belonging’. Overall, 31 out of 32 studies mentioned representations of otherness. Furthermore, ten studies referenced positive representations [49,50,51,62,64,65,69,72,75,77,78], including the depiction of persons with disabilities as individual human beings deserving of respect and acceptance [49,50,69,72,77,78] and the characterisation of a disability as a condition that should not invoke embarrassment [78]. One study explained: ‘Some significant others, however, including some parents, adopt strategies of openness, honesty and neutralization. Parents who define their child’s epilepsy “just like any other medical problem” and “certainly nothing to be ashamed of” apparently encourage their children to have a much more neutral view and a more open informational control strategy. One successful businessman credited his parents with managing epilepsy so as to minimize it and prevent him from using it as a “crutch” or “excuse”: “The parents of an epileptic child are the key to the whole ball of wax, in recognizing that you have a problem in the family but not to let that control the total actions and whole livelihood and whole future of the family. Accept it and go about doing what has to be done to maintain an even keel”’ [78].

4. Discussion

4.1. Summary of Evidence

This scoping review examined lived experiences of individuals with disabilities regarding public disability representation. The findings revealed an increase in related studies since the 1990s, with 32 studies identified in both high-income and low- to middle-income countries. The analysis indicated that individuals with diverse disabilities share primarily negative experiences. A deductive thematic analysis indicated that while the four disability models—religious, charity, medical, and social—partially captured these experiences, they did not fully reflect their complexity. Notably, representations aligned with the social model were absent in the studies. Furthermore, the two typologies of media disability representations constructed by Barnes [31], Clogston [32], and Haller [33,34]—traditional and contemporary—partially reflected the main findings from the studies. The studies did not mention predominantly positive contemporary media representations.

The existing disability models and media typologies fail to fully capture all experiences of disability representations. Through inductive thematic analysis, we identified three interrelated themes that illustrate the relationships among the representations: insufficient knowledge, presumed incapacity, and the otherness of individuals with disabilities. These representations frequently depict individuals with disabilities as severely disabled and lacking in educational and occupational capabilities, contributing to dehumanisation and social exclusion.

4.2. Experienced Public Disability Representations

4.2.1. Increased Focus on Lived Experiences

Although public disability representation has received attention for an extended period (e.g., [29,30,81,82]), only recently has research on experienced public disability representations become more prevalent. As early as 1992, Barnes [31], a disabled academic and advocate, observed that there is increasing awareness among individuals with disabilities that stereotypical assumptions about them stem from superstition, myths, and beliefs from earlier, less enlightened periods (p. 6). He argued that these representations have detrimental effects on both disabled individuals and society at large (p. 19). Nevertheless, for a long time, there was a scarcity of research regarding public disability representation as experienced by individuals with disabilities. Several factors may have contributed to the recent rise in research concerning lived experiences. Public disability representations received little attention at all prior to 1990. The prevailing medical model at the time regarded disability as an individual issue (e.g., [17]). With the rise of the social model, which highlights the influence of societal structures and barriers, awareness grew concerning the detrimental effects of media representations (e.g., [17,83]). Consequently, the 1990s experienced an increase in studies focused on disability representations in the media (e.g., [29,30,32]). However, research into experienced disability representation was still largely missing. Critiques from scholars, such as Shakespeare [25] and Reeve [84], regarding the social model’s emphasis on the collective aspects of disabilities, alongside the growth of Disability Studies as a scholarly discipline championed by scholars like Barnes [85], seem to have resulted in heightened focus on the lived experiences of individuals with disabilities. Research on experienced public disability representation has increased since 2010, reflecting this trend.

The focus of the social model on social constraints affecting the collective of disabled people likely had an additional impact. The social model’s focus on social constraints affecting the collective of persons with disabilities may have resulted in the lack of studies consistent with this model, as we analysed studies focussing on the personal experiences of individuals with disabilities.

4.2.2. Predominantly Unfavourable Representations?

According to Richards et al. [86] and Schanke et al. [87], positive representations are crucial for fostering the personal development of people with disabilities and reshaping public perceptions. As a result, unlike many stigma studies (e.g., [3,11,12,88,89,90]), we did not wish to approach representation negatively. Examining public representation of disabilities through a stigma lens neglects the consideration of any potential positive dimensions. Stigma is defined by Goffman [8] and Link and Phelan [9] as being inherently negative and resulting from power disparities. Nevertheless, we found that individuals with disabilities largely associate public disability representation with negative experiences, despite acknowledging positive experiences, as well. Partly, this may be accounted for by the use of the negatively charged search term ‘stigma’. Indeed, almost 70% of the studies appeared to adhere to the stigma traditions of Goffman [8], Link and Phelan [9], and others. However, the perspective of the reviewed studies may also influence the number of negative experiences. For example, two studies examined coping mechanisms [52,78]. Coping mechanisms inherently assume the management of adverse situations. Furthermore, four studies labelled people with disabilities as ‘patients’ [65,67,69,77]. This aligns with the medical model and reinforces the notion that disability is an abnormal state requiring intervention. Consequently, it remains unclear whether individuals with disabilities predominantly experience negative public disability representations or if this finding is influenced by bias in the reviewed studies.

4.2.3. Reflecting Multifaceted Experiences

Retief [15], Shakespeare [25], and Swain [28] emphasise the significance of disability models for understanding the lives of people with disabilities. Models define disability, shape public disability representations, and affect the self-perceptions of disabled individuals. Media disability typologies facilitate a better understanding of media portrayals of people with disabilities [29,30,31,32,33,34,35]. To what extent do disability models and media typologies facilitate the understanding of experienced disability representations of individuals with disabilities? The deductive analysis indicated that the models and typologies only partially captured the experienced public disability representations.

Regarding disability models, this incomplete reflection may be partially due to the extensive and overlapping definitions of the models, as well as the prioritisation or de-emphasis of specific aspects based on context. Almost all studies identified representations that aligned with the medical model, while none aligned with the social model. It is plausible that individuals with disabilities encounter disability representations that primarily align with the medical model. The public may not perceive individuals with disabilities through a social model; people with disabilities may not recognise representations that align with it. Scholars like Shakespeare and Swain value disability models, but the models seem inadequate for understanding experienced public disability representations.

Barnes’s and Clogston–Haller’s media typologies, however, appear to reflect the lived experiences of individuals with disabilities. Nonetheless, these typologies do not to fully capture the specificity of certain experienced representations. Among other things, the typologies do not account for the ‘disability spreads’ representation, which refers to the assumption that a disability affects other aspects of one’s personality, as well; for instance, having a sensory disability implies also having a physical disability. Phillips [76] refers to the experience that people think ‘that form evokes function, that physiological damage spreads, albeit metaphorically, to the total personality and life circumstances of the disabled individual’. This instance of not capturing all experienced representations may arise from the fact that the typologies do not originate from the lived experiences of individuals with disabilities but instead from academic analyses of disability representations in the media. Moreover, media typologies possess inherent limitations, frequently referencing actions portrayed in films or television shows like ‘object of ridicule’ and ‘object of violence’. Typologies tend to be concrete, recognisable, and tangible, often accompanied by catchy titles. Media disability typologies serve as useful tools for analysing representations in the media; however, they fall short of providing a comprehensive understanding of the multifaceted and interconnected experiences of individuals with disabilities.

We were able to construct three interrelated themes—ignorance, limited capabilities, and otherness. The themes reflect the multifaceted and predominantly negative experiences of public disability representation among individuals with disabilities. They align with the fears of people with disabilities that these representations may result in the perpetuation of injustices, including restricted opportunities, exclusion, and a sense of diminished life value (e.g., [64,74,76,77]). Moreover, these representations could reinforce self-stigma (e.g., [51,58,80,88]). This scoping review underscores the necessity of investigating the lived experiences of individuals with disabilities, thereby enhancing the limited research on the effects of disability representations to date (e.g., [38,89,91]). Such experiences are crucial for developing policies concerning disability awareness and representation [5] (art. 8).

4.3. Limitations

By limiting our research to available online, qualitative, peer-reviewed, English-language studies, our findings may be biased. For instance, the experiences of individuals with disabilities from specific geographical areas and printed publications may have been omitted.

The deductive analysis examined the extent to which the experienced public disability representations in the reviewed studies were reflected in four disability models: the religious model, the charity model, the medical model, and the social model. The overview of disability models included the biopsychosocial model and the human rights model, as well. Nevertheless, the analysis did not consider these models due to their overlap with the medical and social models. The omission of these models from the deductive analysis may be considered a limitation of the scoping review.

Another limitation is the use of the search terms ‘representation’, ‘stereotype’, ‘stigma’, and ‘attitude’. Alongside these search terms, the studies employed alternative core concepts to denote public disability representation. Terms such as ‘belief’, ‘label’, ‘meaning’, and ‘prejudice’ were also found. The presence of alternative core concepts in the included studies suggests that we may have overlooked studies that exclusively employed these alternative concepts. Nevertheless, this reflects the outcome of the current search.

4.4. Recommendations for Future Studies

While most studies included in this scoping review provided detailed descriptions of participants’ disability types, there was a tendency to treat them as homogeneous groups. These studies largely overlooked how different types of disability, along with additional factors, such as public roles, gender, ethnicity, religion, educational attainment, and socioeconomic status, might influence individuals’ experiences of public disability representation. Further research is needed to explore these variations and examine the role of intersectionality in shaping these experiences. Notably, future studies should also incorporate the perspectives of individuals with intellectual disabilities. The PhotoVoice studies featured in this review [70,79] highlight the effectiveness of arts-based methods in disability representation research, particularly when verbal data collection techniques are less applicable [86]. Additionally, we encourage future studies to remain open to the potential positive aspects of public disability representations by avoiding specific perspectives, such as coping, which may bias participants’ experiences. Investigating the differences in experiences across specific representation models, such as the religious and charity models, would provide further insight.

This study focused on the overarching theme of public disability representation and found that multiple terms, including ‘stigma’, ‘stereotype’, ‘attitude’, and ‘representation’, are used to describe this concept, each highlighting different aspects. Researchers should be mindful that the choice of core terminology may influence study outcomes. Therefore, we recommend adopting a comprehensive definition of disability representation and clarifying its meaning for participants through the use of diverse terminology.

5. Conclusions

This scoping review examined the public representation experiences of individuals with disabilities. While media disability representation typologies effectively capture many of the predominantly negative experiences reported, they fail to fully reflect the nuanced lived experiences detailed in the examined studies. To address this gap, three interrelated themes were developed: ‘Ignorance’, ‘Limited Capabilities’, and ‘Otherness’.

Notably, the studies included in this review did not include the lived experiences of individuals with intellectual disabilities. Furthermore, there is a lack of comparative research examining insider perspectives across different types of disabilities. Future studies should adopt an intersectional, cross-disability approach to deepen the understanding of public disability representations from the perspective of individuals with disabilities. Such research should also explore the potential positive aspects of these representations. Evaluating the importance of public disability representations from the perspective of individuals with disabilities is crucial, particularly in light of the UNCRPD’s recommendations for increasing awareness.