Lived Experiences of Public Disability Representations: A Scoping Review

Round 1

Reviewer 1 Report

Comments and Suggestions for Authors

Please see review attached. 

 

 

Comments for author File: Comments.pdf

Author Response

Comments 1:

Thank you for the opportunity to review this paper, which aimed to explore the lived experiences of individuals with disabilities regarding public disability representations. Overall, it is an interesting read based on a worthwhile scoping review study. However, in its present form it does not deliver to its full capacity and I recommend major revision based on the points below.

Response 1:

We thank the reviewers for acknowledging the relevance or our study and the constructive comments and suggestions.

 

Comments 2:

The introduction can have sub-headings to make the rationale and focus clearer.

Response 2:

Thank you for your suggestion. Your comment on the introduction's structure is appreciated.

Subheadings have been incorporated to improve the clarity of the introduction, in accordance with your suggestion (lines 42, 79, 82, 94, 131, 148)

 

Comments 3:

Within the methods section, what is significant about the time period? What happened in January 1945 in the field of disability to warrant this start date for the search?

Response 3:

A duration of the search period exceeding 75 years was chosen due to the limited research available on public disability representation from the perspective of people with disabilities. This prolonged period allows for the identification of a substantial number of 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. However, in the early post-World War II period, there were no significant events in the field of disability that warranted a starting point for the investigation. The year 1948 was selected due to the publication of the Universal Declaration of Human Rights (UDHR). The choice of 1 January was based on its perceived suitability as a date.

The text was adapted as follows (lines 220-228):

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]. 

 

Comments 4:

The researchers have a broad focus and the analysis of papers with from three different angles - models, typologies and themes is broad. It would be better to focus on one of these to give them justice. (...)

Response 4:

To obtain a comprehensive understanding of the multifaceted representation experiences of individuals with disabilities, it is essential to examine these experiences from various perspectives. Consequently, we believe it is more advantageous to refrain from focussing on either models, or typologies, or themes. Instead, we have opted for a broader approach in this exploratory scoping review, analysing the articles from these three distinct angles.

The following explanation has been incorporated into the aims section (lines 165-168):

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.

 

Comments 5:

More quotes from the reviewed papers could then be used to support the findings and enrich the findings section of the paper.

Response 5:

We appreciate your suggestion.

We have decided to incorporate additional quotes. (lines 338, 342, 353, 363, 418, 452)  

 

Comments 6:

While the authors argue the increase in studies exploring media representations and disability have increased due to the social model of disability, the studies reviewed do not align with this model. What may be the reason/s for this? This should be discussed further.

Response 6:

Seventy-five percent of the analysed studies were published post-2010. The median is at 2018. There has been a significant increase in studies in recent years. This phenomenon appears to be attributable to the increasing focus on individual personal experiences. However, this aspect receives minimal consideration within the strict confines of the social model.

The social model highlights the environmental factors that contribute to disability. Attitudes, stigmas, and representations serve as significant constraints. Consequently, there was an increasing focus on media representations, as well as on public attitudes, stigma, and images associated with specific professional groups in studies aligning with the social model.

Critics of the social model contended that it inadequately considered the personal experiences of individuals with disabilities. The criticism of the split between impairment and disability was a clear example. This led, among others, to increased focus on the personal experiences of individuals with disabilities within disability studies.

The absence of studies that align strictly with the social model in the reviewed studies is likely pertinent to our research question. This review does not encompass studies that examine actual representations in media or society; rather, it focuses on the representations as experienced by individuals with disabilities. That kind of research does not align with the parameters of the strict social model.

This has been underscored by modifying the text of this section (lines 509-513):

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. 

 

Comments 7:

The discussion reads more like a limitations and suggestions for future research section and does not provide a just discussion of the findings.

Response 7:

We have adapted and rephrased the discussion section to better present a discussion of the findings (lines 485-477):

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 research on experienced public disability representations has 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 the 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 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. [91] and Schanke et al. [90], 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., [3,11,12,86,87,89]), 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 amount of negative experiences may also be influenced by the perspective of the researchers. For example, research on coping mechanisms [52,78] inherently assumes the management of adverse situations. Additionally, labelling people with disabilities as ‘patients’ [65,67,69,77] aligns with the medical model and reinforces the notion that disability is an abnormal state requiring intervention. Currently, it is unclear whether individuals with disabilities predominantly experience negative disability representations or if this observation results from a bias in existing research.

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 [29-35]. 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 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 such as ‘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 would reinforce self-stigma (e.g., [51,58,80,86]). 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., [38,87,88]). Such experiences are crucial for developing policies concerning disability awareness and representation [5] (art. 8).

Reviewer 2 Report

Comments and Suggestions for Authors

This is an interesting study, which reflect a significant amount of work by the research team and addresses a very important but challenging area of research. Parts of the study appear to be well-executed such as the inductive analysis, while other parts such as the deductive analysis are unclear. My questions/recommendations are outlined below:

Introduction:

1. Line 70: It is unclear why patients in a healthcare facility are being discussed here. This sentence is also unclear – it refers to imposing “significant discriminatory consequences on staff based on their perceptions”.

 

2. The human rights model of disability (as reflected in the UNCRPD) and the biopsychosocial model of disability (as reflected in the ICF) are not mentioned in the overview of frameworks/approaches on disability. Please discuss how these relate to the four models of disability presented in the paper.

 

3. Please advise on what adaptations were made to the media disability typologies presented in Table 2.

 

4. The paper states: “To better understand portrayals of disabled people in the media, several media scholars developed typologies of disability representations (e.g., [47–50]) (Table 2)”. However, the authors referenced at 47-50 are not presented in Table 2 (Cumberbatch, Donaldson etc.)?

 

5. Paragraphs could be more clearly structured. For example, on page 2, one long paragraph is presented, followed by one stand-alone sentence.

 

6. Sub-headings would perhaps help to structure the Introduction more clearly, although this is at the discretion of the authors.

 

Methods:

7. The paper states: “The 1945–2024 period was selected because, as far as we are aware, there is little research on experienced public disability representation from the perspective of people with disabilities”. Please explain why the time period commencing from 1945 was selected, as this is not clarified in the above passage.

 

8. Please clarify why only qualitative studies were included. The manuscript states: “Due to the review’s emphasis on investigating individuals’ experiences, we analysed qualitative findings”. Individuals’ experiences could also have been investigated through quantitative studies – please clarify.

 

9. The manuscript states that “Reasons for inclusion or exclusion were discussed by the first and second authors”. Did the other authors participate in (such as conduct a sample check) the review and selection process, or was the identification and screening of articles conducted solely by one researcher?

 

10. Please explain: “Our analysis focused on the paragraphs where researchers analysed, classified, and labelled the public disability representation experiences of their participants rather than the cited or reported lived experiences of individual participants” (line 222).

 

11. Please describe the six-stage inductive approach outlined by Terry et al. [70].

 

Results:

12. Please clarify what ‘context’ signifies as a sub-heading in Table 4.

 

13. While the inductive analysis is well-presented, the deductive analysis requires clarification. As presented in Table 2, Barnes and Clogston–Haller present frameworks/typologies in relation to media stereotypes/representations. Yet the supporting excerpts for the deductive analysis using these frameworks (p. 13) appear to focus on public representations rather than media representations, such as “‘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” or “‘Feelings of sorry or pity are a common type of stigma surrounding hearing loss according to participants”. These quotes appear to reflect public representations rather than specifically media representations? Similarly, Table 6 presents experienced public disability representations classified by media disability representation typologies. Yet, the introduction section differentiates between public representations and media representations: “‘Public disability representations’ thus refer to overarching representations of people with disabilities, while ‘media disability representations’ pertain to the depictions of this category in the media”. Please clarify why a framework of media representations were used for the deductive analysis. Please also clarify if the articles included in the review focused on public representations or media representations or both.

 

14. In Table 7, please clearly distinguish between the columns for ‘Ignorance’, ‘Limited Capabilities’, and ‘Otherness’, as it is currently difficult to determine the themes that fall under these overarching domains/themes.

 

Discussion:

15. Please clarify the following passage: “The context of the studies may also contribute to the high incidence of negative experiences. For example, research on coping mechanisms assumes the management of adverse situations (e.g., [71,74]). Labelling people with disabilities as ‘patients’ is indicative of the medical model (e.g., [87,89,91,99]), emphasising that the situation is aberrant, and the patient requires help. Nevertheless, positive experiences, though limited, are noted. Individuals with disabilities value the presence of visible role models [91,98]. Furthermore, people with disabilities serving as role models are essential for transforming public disability representations and fostering the personal development of individuals with disabilities (e.g., [113,114])”.

16. With regards to the section “Moreover, future studies will seek to identify the potential positive aspects of public disability representations while maintaining a neutral research context. They will explore the differences in experiences associated with specific representations, including those reflecting the religious model and the charity model” – please rephrase this as recommendations rather than something that “will” happen.

 

17. The Conclusions section states: “Media disability representation typologies appear to effectively capture the largely adverse experiences of individuals with disabilities. However, these media representations do not adequately capture all of the nuanced lived experiences detailed in the examined studies. We developed an alternative model to illustrate these experienced disability representations”. Please clarify what alternative model was developed.

 

 

 

Comments on the Quality of English Language

At times, there could be greater clarity of expression in the writing in the manuscript overall, for example: “His typology of stereotypes was subsequently objectified by others” (line 121); “Even though the development of the typologies of Barnes, a disabled scholar himself, was monitored by people with disabilities….” (line 134); “….provide insight into the studies’ experienced public disability representations” (line 171); “Moreover, the overlap of disability concepts complicated the simplifications of models to discrete disability representations” (line 411); “The presence of alternative core concepts in the included studies to denote experienced public disability representation suggests that we did not find any studies exclusively using these alternative concepts” (line 506). The meaning of these statements is unclear.

 

Author Response

Comments:

This is an interesting study, which reflect a significant amount of work by the research team and addresses a very important but challenging area of research. Parts of the study appear to be well-executed such as the inductive analysis, while other parts such as the deductive analysis are unclear. My questions/recommendations are outlined below:

Response:

We thank the reviewers for acknowledging the relevance or our study and the constructive comments and suggestions.

 

Introduction:

Comments 1:

Line 70: It is unclear why patients in a healthcare facility are being discussed here. This sentence is also unclear – it refers to imposing “significant discriminatory consequences on staff based on their perceptions”.

Response 1:

We appreciate your comment. We attempted to illustrate the significance of power disparities within Link and Phelan's concept of stigma; however, due to the resulting confusion, we have opted to eliminate the reference to patients in care institutions from the manuscript.

 

Comments 2:

The human rights model of disability (as reflected in the UNCRPD) and the biopsychosocial model of disability (as reflected in the ICF) are not mentioned in the overview of frameworks/approaches on disability. Please discuss how these relate to the four models of disability presented in the paper.

Response 2:

Your identification of the absence of these significant models is appreciated.

The following paragraph has been included (lines 112-125):

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 right 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.

 

Comments 3:

Please advise on what adaptations were made to the media disability typologies presented in Table 2.

Response 3:

The adaptation from Barnes, Clogston, and Haller involves the application and rephrasing of media disability typologies to improve their comparability. The content was not altered.

Therefore, the note for Table 2 has been revised to (line 145):

Adopted from Barnes [31], Clogston [32], and Haller [33,34].

 

Comments 4:

The paper states: “To better understand portrayals of disabled people in the media, several media scholars developed typologies of disability representations (e.g., [47–50]) (Table 2)”. However, the authors referenced at 47-50 are not presented in Table 2 (Cumberbatch, Donaldson etc.)?

Response 4:

Thank you for pointing out this incorrect reference. Barnes, Clogston, and Haller developed their typologies in part based on the authors in question. We decided to not include the original typologies in Table 2.

In the revised manuscript, the reference to the table has been removed.

 

Comments 5:

Paragraphs could be more clearly structured. For example, on page 2, one long paragraph is presented, followed by one stand-alone sentence.

Response 5:

Thank you for your suggestion. Your comment on the introduction's structure is appreciated.

Subheadings have been incorporated to improve the clarity of the introduction, in accordance with your suggestion (lines 42, 79, 82,  94, 131, 148).

The standalone sentence is now a concise introduction at the beginning of Section 1.2, 'Examining Experienced Public Disability Representation', leading into the subsequent subsections (lines 80-81).

 

Comments 6:

Sub-headings would perhaps help to structure the Introduction more clearly, although this is at the discretion of the authors.

Response 6:

Thank you for your suggestion. Your comment on the introduction's structure is appreciated.

Subheadings have been incorporated to improve the clarity of the introduction, in accordance with your suggestion (lines 42, 79, 82,  94, 131, 148).

 

 

Methods:

Comments 7:

The paper states: “The 1945–2024 period was selected because, as far as we are aware, there is little research on experienced public disability representation from the perspective of people with disabilities”. Please explain why the time period commencing from 1945 was selected, as this is not clarified in the above passage.

Response 7:

A duration of the search period exceeding 75 years was chosen due to the limited research available on public disability representation from the perspective of people with disabilities. This prolonged period allows for the identification of a substantial number of 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. However, in the early post-World War II period, there were no significant events in the field of disability that warranted a starting point for the investigation. The year 1948 was selected due to the publication of the Universal Declaration of Human Rights (UDHR). The choice of 1 January was based on its perceived suitability as a date.

The text was adapted as follows (lines 220-228:

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.

 

Comments 8:

Please clarify why only qualitative studies were included. The manuscript states: “Due to the review’s emphasis on investigating individuals’ experiences, we analysed qualitative findings”. Individuals’ experiences could also have been investigated through quantitative studies – please clarify.

Response 8:

In 2.4, ‘Study Selection,’ we stated that both qualitative research studies and mixed-methods studies were included, provided that the qualitative part was distinctly identified and reported separately from the quantitative findings. We chose this approach due to the closeness of qualitative research to participants' lived experiences. We sought research focussing on perceived disability representations and lived experiences or experienced knowledge of individuals with disabilities. Then it is essential that the data are the words of the participants and therefore we decided to only analyse qualitative findings. Our analysis intentionally excludes studies that categorise participant responses according to predetermined classifications.

We therefore modified the sentence to (lines 226-228):

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.

 

Comments 9:

The manuscript states that “Reasons for inclusion or exclusion were discussed by the first and second authors”. Did the other authors participate in (such as conduct a sample check) the review and selection process, or was the identification and screening of articles conducted solely by one researcher?

Response 9:

To better explain the authors' roles, we changed the section about the selection process to (lines 232-237):

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.

 

Comments 10:

Please explain: “Our analysis focused on the paragraphs where researchers analysed, classified, and labelled the public disability representation experiences of their participants rather than the cited or reported lived experiences of individual participants” (line 222).

Response 10:

The information provided in the reviewed articles does not permit an analysis of the public disability representation experiences of individual participants. This is mainly attributable to the researchers' selection of quotes. The researchers utilise these quotations to elucidate or articulate their perspective. The statements of individual participants are not accessible within the framework of the complete, original interview or conversation. Analysing selected individual quotes in isolation may result in an inaccurate or distorted interpretation.

We examined the sections in which the researchers articulated their analyses. Consequently, articles featuring interviewees discussing imaging experiences, but lacking further analysis, classification, or labelling by researchers, were excluded.

To avoid potential confusion, we opted to omit the second part of the sentence. The sentence is revised as follows (lines 240-241):

Our analysis focused on the sections where researchers analysed, classified, and labelled the public disability representation experiences of their participants.

 

Comments 11:

Please describe the six-stage inductive approach outlined by Terry et al. [70].

Response 11:

We have incorporated the subsequent paragraph (lines 256-272): 

(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; 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.

 

Results:

Comments 12:

Please clarify what ‘context’ signifies as a sub-heading in Table 4.

Response 12:

Not all studies focused solely on the experiences of public disability representation in general. Some studies linked these experiences to what we named a specific ‘context’, such as the public disability representation experiences that people encountered while growing up or public disability representation experiences of disabled emigrants. Usually this study context, setting or perspective is described in the research question or research aim.

After rethinking the useful comments of the reviewers we have changed the term ‘context’ in Table 4 and other sections of the manuscript, into ‘perspective’.

Moreover, we have given three examples of perspective in paragraph 3.2, 'Characteristics of the Studies,' (lines 298-301):

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 representation experiences and assistive devices [54,72], and two representation experiences in the context of work [74,79].

 

Comments 13:

While the inductive analysis is well-presented, the deductive analysis requires clarification. As presented in Table 2, Barnes and Clogston–Haller present frameworks/typologies in relation to media stereotypes/representations. Yet the supporting excerpts for the deductive analysis using these frameworks (p. 13) appear to focus on public representations rather than media representations, such as “‘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” or “‘Feelings of sorry or pity are a common type of stigma surrounding hearing loss according to participants”. These quotes appear to reflect public representations rather than specifically media representations? Similarly, Table 6 presents experienced public disability representations classified by media disability representation typologies. Yet, the introduction section differentiates between public representations and media representations: “‘Public disability representations’ thus refer to overarching representations of people with disabilities, while ‘media disability representations’ pertain to the depictions of this category in the media”. Please clarify why a framework of media representations were used for the deductive analysis. Please also clarify if the articles included in the review focused on public representations or media representations or both.

Response 13:

A misunderstanding seems to have occurred. Barnes and Clogston-Haller developed typologies to classify representations of disability in media. This scoping study sought to evaluate the extent to which the public disability representations experienced by individuals with disabilities align with the media disability typologies established by Barnes and Clogston-Haller. On the one hand because, should this be the case, a useful framework would be available for future experienced disability representation research. On the other hand, this could help ascertain the relationship between media representations and public disability representation experiences. Our approach meant that we included solely experienced public disability representation studies and excluded studies focussing on media representations of disability.

In order to avoid confusion, we have changed the research question in paragraph 2.2. Identifying Research Questions into (lines 187-189):

(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)? 

 

Comments 14:

In Table 7, please clearly distinguish between the columns for ‘Ignorance’, ‘Limited Capabilities’, and ‘Otherness’, as it is currently difficult to determine the themes that fall under these overarching domains/themes.

Response 14:

Thank you for your advice.

Vertical lines have been incorporated into Tables 6 and 7 to enhance the distinction of overarching typologies and themes.

 

Discussion

Comments 15:

Please clarify the following passage: “The context of the studies may also contribute to the high incidence of negative experiences. For example, research on coping mechanisms assumes the management of adverse situations (e.g., [71,74]). Labelling people with disabilities as ‘patients’ is indicative of the medical model (e.g., [87,89,91,99]), emphasising that the situation is aberrant, and the patient requires help. Nevertheless, positive experiences, though limited, are noted. Individuals with disabilities value the presence of visible role models [91,98]. Furthermore, people with disabilities serving as role models are essential for transforming public disability representations and fostering the personal development of individuals with disabilities (e.g., [113,114])”.

Response 15:

Your comment is appreciated. A greater clarity of expression in the writing was necessary, and the combination of two distinct messages in the same paragraph contributed to the lack of clarity.

We have clarified the passage as follows (lines 521-523 and lines 526-530):

Nevertheless, we found that individuals with disabilities largely associate public disability representation with negative experiences, despite acknowledging positive experiences as well.

(...)

However, the amount of negative experiences may also be influenced by the perspective of the researchers. For example, research on coping mechanisms [52,78] inherently assumes the management of adverse situations. Additionally, labelling people with disabilities as ‘patients’ [65,67,69,77] aligns with the medical model and reinforces the notion that disability is an abnormal state requiring intervention. 

 

Comments 16:

With regards to the section “Moreover, future studies will seek to identify the potential positive aspects of public disability representations while maintaining a neutral research context. They will explore the differences in experiences associated with specific representations, including those reflecting the religious model and the charity model” – please rephrase this as recommendations rather than something that “will” happen.

Response 16:

Thank you for your advice. We have rephrased the recommendations as follows (lines 601-605:

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.

 

Comments 17:

The Conclusions section states: “Media disability representation typologies appear to effectively capture the largely adverse experiences of individuals with disabilities. However, these media representations do not adequately capture all of the nuanced lived experiences detailed in the examined studies. We developed an alternative model to illustrate these experienced disability representations”. Please clarify what alternative model was developed.

Response 17:

The term 'model' suggested a concept that was neither applicable nor advisable according to the analyses presented in the manuscript.

Consequently, we selected a more modest phrasing (lines 617-618).

To address this gap, three interrelated themes were developed: ‘Ignorance’, ‘Limited Capabilities’, and ‘Otherness’.

 

Comments on the Quality of English Language

Comments 18:

At times, there could be greater clarity of expression in the writing in the manuscript overall, for example: “His typology of stereotypes was subsequently objectified by others” (line 121); “Even though the development of the typologies of Barnes, a disabled scholar himself, was monitored by people with disabilities….” (line 134); “….provide insight into the studies’ experienced public disability representations” (line 171); “Moreover, the overlap of disability concepts complicated the simplifications of models to discrete disability representations” (line 411); “The presence of alternative core concepts in the included studies to denote experienced public disability representation suggests that we did not find any studies exclusively using these alternative concepts” (line 506). The meaning of these statements is unclear.

Response 18:

We value your comment regarding the manuscript's clarification needs. The statements you referenced have been revised, and several other statements have been clarified as well (e.g., the lines 10-26, 35-41, 59-67, 159-151, 333-356, 396-400, 591-596). Additionally, minor textual modifications have been implemented in various sections to enhance readability.

 

Comments 19:

“His typology of stereotypes was subsequently objectified by others” (line 121)

Response 19:

This statement was omitted as it appeared non-essential to the article.

 

Comments 20:

“Even though the development of the typologies of Barnes, a disabled scholar himself, was monitored by people with disabilities….” (line 134)

Response 20:

This statement has been modified to: (lines 151-155)

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. 

 

Comments 21:

“….provide insight into the studies’ experienced public disability representations” (line 171)

Response 21:

This statement was omitted as our approach of first exploring whether the models and typologies reflected the experienced representations found in the studies and then exploring alternative themes was already explained in 1.3 ‘Research Aim.’

 

Comments 22:

“Moreover, the overlap of disability concepts complicated the simplifications of models to discrete disability representations” (line 411)

Response 22:

In this statement we wanted to explain that reducing multifaceted disability representations to a specific disability model results in the loss of information. Not all facets of that representation can be incorporated in that model. Moreover, the classification of representations into models is complicated by the overlap of disability concepts across various disability models. A particular representation may align with several models. Although relevant, this information does not belong to be in the section ‘Summary of Evidence’. 

We omitted this statement and modified a later statement in the discussion-section (line 540-544):

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. 

 

Comments 23:

“The presence of alternative core concepts in the included studies to denote experienced public disability representation suggests that we did not find any studies exclusively using these alternative concepts” (line 506)

Response 23:

This statement has been modified to (lines 584-589):

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.

Reviewer 3 Report

Comments and Suggestions for Authors

Thank you for the opportunity to provide a peer review of this manuscript. The research question is of interest, and this work will assist with synthesising current evidence in experienced public disability representations. The scoping review methodology is appropriate to answer the research question, and has been well-reported based on Arksey and O'Malley's framework. 

The manuscript is clear and is presented in a well-structured manner. I wonder if the reference list could be shortened somewhat - it currently sits at 115 publications. There are often multiple publications cited to support a claim made within the narrative, and I think there is room for some prioritising of citations. While there are some older citations (i.e., > 5 years), this aligns with the search strategy, which included searching 1945 - 2024.

The methods are described in sufficient detail to allow for reproducibility.  Tables and figures are appropriate and summarise the data satisfactorily. I do have some small editorial suggestions, as listed below.

The conclusions drawn by authors are coherent; however, I do have some comments for consideration as listed below.

Suggestions for consideration:

• Overall, as a researcher working in partnership with disabled people but without expert knowledge in the area of representation, I was left feeling a bit unclear about how 'the experience of representation' was determined in the primary studies - and then, how this has been studied differently to 'how media/society' actually represent disability (i.e., the language they use, metaphors etc). I think this is in part, because the introduction provides such a thorough introduction to media typologies, and so I kept thinking about the actual representation of disability within media/society. I wonder if something could be added to (or subtracted from) the introduction to help a reader like me more easily clarify the distinction between the two from the outset.
• At times, the use of language around disability was inconsistent. For example, in the abstract '...how public views disabilities...' is used - however, this language is inconsistent with social model, people-first, or identity-first language. I wonder if the explanation about the use of terms in this paper (currently p3) could be moved to earlier in the paper. In fact, I wonder if this whole paragraph would help the reader to situate this work more easily. 
• P2L86 suggest remove the word 'slightly' - or find an alternative way to ensure formality of language
• Figure 1 - PRISMA. There is a full stop/period instead of a comma in the 'Records screened based on the title' box. I.e, currently 12.178 rather than 12,178
• P8L225 Suggest changing 'crucial' to 'key'
• P20L404-6 The sentence starting 'The scoping study indicated....' does not seem complete. Should the phrase 'in the number of studies' be added after the words 'notable increase'?
• P22L541 In the conclusion, you refer to 'developing an alternative model', which I don't think you can claim based on the findings included in this manuscript. 

Thank you again for the opportunity to contribute to the ongoing development of this work and for your important role in developing knowledge in this field.

Author Response

Comments 1:

Thank you for the opportunity to provide a peer review of this manuscript. The research question is of interest, and this work will assist with synthesising current evidence in experienced public disability representations. The scoping review methodology is appropriate to answer the research question, and has been well-reported based on Arksey and O'Malley's framework. 

Response 1:

We thank the reviewers for acknowledging the relevance or our study and the constructive comments and suggestions.

 

Comments 2:

The manuscript is clear and is presented in a well-structured manner. I wonder if the reference list could be shortened somewhat - it currently sits at 115 publications. There are often multiple publications cited to support a claim made within the narrative, and I think there is room for some prioritising of citations. While there are some older citations (i.e., > 5 years), this aligns with the search strategy, which included searching 1945 - 2024.

Response 2:

We are glad that the clearness and presentation is appreciated.

 

Comments 3:

The methods are described in sufficient detail to allow for reproducibility.  Tables and figures are appropriate and summarise the data satisfactorily. I do have some small editorial suggestions, as listed below.

Response 3:

Thank you for your suggestions.

 

Comments 4:

The conclusions drawn by authors are coherent; however, I do have some comments for consideration as listed below.

Suggestions for consideration:

Overall, as a researcher working in partnership with disabled people but without expert knowledge in the area of representation, I was left feeling a bit unclear about how 'the experience of representation' was determined in the primary studies - and then, how this has been studied differently to 'how media/society' actually represent disability (i.e., the language they use, metaphors etc). I think this is in part, because the introduction provides such a thorough introduction to media typologies, and so I kept thinking about the actual representation of disability within media/society. I wonder if something could be added to (or subtracted from) the introduction to help a reader like me more easily clarify the distinction between the two from the outset.

Response 4:

Thank you for your question about research into the experienced public disability representations and research into the actual media disability representations. The first type of representation refers to disability representations as experienced by people with disabilities. Methods to study this experienced knowledge include the analysis of the stories of individuals with disabilities (e.g., interviews or focus groups) as well as the use of arts-based methods, such as photovoice. Enquiring about personal experiences with these representations, asking them to describe their own perceptions, asking them how they feel being looked at as a person with a disability, or recounting situations in which they faced others' perceptions can yield stories. It is essential to differentiate between these studies focusing on 'subjective' experienced disability representations and those examining 'objective' actual disability representations. The latter refers to the actual representations of people with disabilities in media. Methods for studying the scope and varieties of disability representations in media include content analysis—quantifying or thematizing terminology, images, metaphors, and particular news items. It is relevant to recognise that these actual media representations may not align with experienced representations.

Although it is outside the scope of this study to go into detail on the differences between studying the actual occurrence of disability representations in the media and studying the lived experiences of people with disabilities, we have added to the introductory paragraph the sentence (34-36):

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.

Moreover, we have included line 49-51:

Shakespeare [7] identified everyday interactions, media, charitable imagery, and popular assumptions as sources of disability representations. 

 

Comments 5:

At times, the use of language around disability was inconsistent. For example, in the abstract '...how public views disabilities...' is used - however, this language is inconsistent with social model, people-first, or identity-first language. I wonder if the explanation about the use of terms in this paper (currently p3) could be moved to earlier in the paper. In fact, I wonder if this whole paragraph would help the reader to situate this work more easily. 

Response 5:

Thank you for your comment on terminology.

In line with your suggestion, we have moved the short explanation about the use of terms to the first paragraph of the manuscript (lines 57-58):

Furthermore, the terms ‘disabled’ and ‘with a disability’ are utilised interchangeably in this study. 

Moreover, we have changed the word ‘disabilities’ in the abstract to ‘people with disabilities’ (line 10).

 

Comments 6:

P2L86 suggest remove the word 'slightly' - or find an alternative way to ensure formality of language

Response 6:

Thank you for your suggestion.

The term ‘slightly’ has been removed from line 89.

 

Comments 7:

Figure 1 - PRISMA. There is a full stop/period instead of a comma in the 'Records screened based on the title' box. I.e, currently 12.178 rather than 12,178

Response 7:

We appreciate your comment and have rectified this typographical error in Figure 1.

 

Comments 8:

P8L225 Suggest changing 'crucial' to 'key'

Response 8:

Thank you for your suggestion.

We appreciate your comment and have changed ‘crucial’ into ‘key’ in line 243.

 

Comments 9:

P20L404-6 The sentence starting 'The scoping study indicated....' does not seem complete. Should the phrase 'in the number of studies' be added after the words 'notable increase'?

Response 9:

We appreciate your comment and have changed the sentence as follows (lines 468-470::

Findings revealed an increase in related studies since the 1990s, with 32 studies identified in both high-income and low- to middle-income countries.

 

Comments 10:

P22L541 In the conclusion, you refer to 'developing an alternative model', which I don't think you can claim based on the findings included in this manuscript. 

Response 10:

The term 'model' suggested a concept that was neither applicable nor advisable according to the analyses presented in the manuscript.

Consequently, we selected a more modest phrasing (lines 617-618):

To address this gap, three interrelated themes were developed: ‘Ignorance’, ‘Limited Capabilities’, and ‘Otherness’.

 

Comments 11:

Thank you again for the opportunity to contribute to the ongoing development of this work and for your important role in developing knowledge in this field.

Response 11:

Thank you for your useful comments.

Round 2

Reviewer 1 Report

Comments and Suggestions for Authors

Thank you for addressing all my comments. 

Author Response

Comments 1:

Thank you for addressing all my comments. 

Response 1:

We are grateful for your constructive and clarifying critical feedback. 

Reviewer 2 Report

Comments and Suggestions for Authors

Introduction:

1. Thank you for including an overview of the human rights model of disability and the biopsychosocial model of disability. It would be useful to also include this as a limitation of the study in the Limitations section, as the deductive analysis did not appear to avail of these models.

The focus in the study solely only qualitative studies could also be included as a limitation in the Limitations section.

2. There may be a typo at line 357, where it states “In contrast, traditional representations were rare…”. However, traditional typologies are outlined above?

3. Although revised, the section at line 526 could be stated more clearly: “However, the amount of negative experiences may also be influenced by the perspective of the researchers. For example, research on coping mechanisms [52,78] inherently assumes the management of adverse situations. Additionally, labelling people with disabilities as ‘patients’ [65,67,69,77] aligns with the medical model and reinforces the notion that disability is an abnormal state requiring intervention. Currently, it is un-clear whether individuals with disabilities predominantly experience negative disability representations or if this observation results from a bias in existing research”.  Was the term ‘coping mechanisms’ used in the search terms for the scoping review? With regards to ‘a bias in existing research’, do you mean bias in the current scoping review?

Author Response

Comments 1:

Thank you for including an overview of the human rights model of disability and the biopsychosocial model of disability. It would be useful to also include this as a limitation of the study in the Limitations section, as the deductive analysis did not appear to avail of these models.

Response 1:

Thank you for this suggestion. Our decision to not include the human rights model of disability and the biopsychosocial model of disability in the deductive analysis is noted as a limitation in the Limitation section (lines 587-593):

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 avail of 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.

 

Comments 2:

The focus in the study solely only qualitative studies could also be included as a limitation in the Limitations section.

Response 2:

Thank you for this observation. The following modification is made to the Limitation section (lines 583-586):

By limiting our research to online available, 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.

 

Comments 3:

There may be a typo at line 357, where it states “In contrast, traditional representations were rare…”. However, traditional typologies are outlined above?

Response 3:

Thank you for identifying the potential ambiguity in this sentence's formulation.

We have modified the sentence as follows (lines 357-362):

In contrast, alongside the frequently referenced traditional representations mentioned previously, there were also less frequently observed traditional representations. The ‘Social Pathology’ representation (n = 4) 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) relates to economic costs, including accessibility and inclusion [74,77].

 

Comments 4:

Although revised, the section at line 526 could be stated more clearly: “However, the amount of negative experiences may also be influenced by the perspective of the researchers. For example, research on coping mechanisms [52,78] inherently assumes the management of adverse situations. Additionally, labelling people with disabilities as ‘patients’ [65,67,69,77] aligns with the medical model and reinforces the notion that disability is an abnormal state requiring intervention. Currently, it is un-clear whether individuals with disabilities predominantly experience negative disability representations or if this observation results from a bias in existing research”.  Was the term ‘coping mechanisms’ used in the search terms for the scoping review? With regards to ‘a bias in existing research’, do you mean bias in the current scoping review?

Response 4:

We aimed to convey that the adverse results may be partially attributed to a bias in the reviewed studies, rather than the methodology of the current scoping review. For instance, our scoping review did not include the term 'coping mechanisms' in its search terms. This research theme originated from the analysed studies.

To clarify this section, we have modified it as follows (lines 528-535):

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.