1. Introduction

2Article 30 CRPD cannot be read in isolation. Rather, it must be interpreted in light of the general principles of the Convention embodying a “paradigm shift,” away from a social welfare response to disability to a rights-based approach. The CRPD involves a groundbreaking “paradigm shift,” from perceptions of persons with disabilities as “objects” of charity, from the medical model, towards viewing persons with disabilities as holders of rights (Quinn, 2009: 216). The Convention constitutes “disability” as resulting “from the interaction between persons with impairments and attitudinal and environmental barriers that hinder their full and effective participation in society on an equal basis with others” (Preamble, para. 5 and Article 1 CRPD). In this respect, the CRPD has been said to embrace the social model of disability (Kanter, 2015: 8), or the social-contextual model of disability, which may represent a more refined version of the social model (Broderick, 2015; Broderick & Ferri, 2019; Waddington, 2005).

3In light of this paradigm shift, and, as recently suggested by Quinn (EASPD, 2020: 2), participation in culture must also be conceived of as an expression of personhood and dignity, which are cornerstones of the CRPD. Cultural rights must be afforded to persons with disabilities on an equal basis with others, and States Parties must address barriers, socio-economic disadvantages, and combat stigma, all of which hamper cultural participation of people with disabilities. Furthermore, as the UN Special Rapporteur in the field of Cultural Rights contends, culture has potential to promote fuller enjoyment of human rights, including by championing universality of human rights and dignity, embodying and embracing cultural diversity, challenging discrimination, and contributing to reconciliation (Bennoune, 2018).

5In addressing this research question, we recognise that “culture” is a complex and multifaceted concept (Riddell & Watson, 2003). Its definition depends on the context and the disciplinary perspective of the writer (Johnson, 2020). For the purpose of this analysis, while valuing the broad understanding of culture put forward in literature (Williams, 1981: 13) and underpinned in Article 30 CRPD (Broderick & Ferri, 2019), we focus on arts practices and heritage. The term “arts practices” refers to different art forms, including literature, dance, music, theatre, and visual arts (Caust, 2019). We do so, not to conflate ideas of “culture” and “art,” but because arts practices are visible and acknowledged forms of cultural expression and they should reflect a variety of voices and identities (Caust, 2019; European Union, 2019).

7In disability studies, cultural understandings of disability are increasingly important (Goodley, 2013: 631-2). Contributions from scholars and artists emphasise transformation of mainstream culture through involvement of people with disabilities in the arts. For example, Sandahl (2018: 84) argues that “the break-through” work of artists with disabilities is that which “tends to challenge, not replicate, mainstream traditions” and that without experiencing disabled artists’ differences, the “mainstream status quo may not be able to imagine the ways it could be transformed.” However, the focus on participation in the arts by people with disabilities remains limited, and understandings of the creative potential of people with disabilities to reshape the mainstream “remains largely untapped” (ibid.: 85). A scoping review of the literature on societal participation by people with disabilities in Europe showed that the most dominant area of focus is still labour-market participation (Hästbacka, Nygård & Nyqvist, 2016). Within the 37 articles reviewed in that study, seven focused on leisure activities of which only two focused on arts participation (in the form of dance, theatre and other cultural activities) (ibid.). This is notwithstanding how, as Scully (2012: 73) argues, the CRPD can act “as a tool for the transformation of how cultures think about disabled people.”

8The remainder of this article is divided into six sections. Section 2 briefly explores the paradigm shift instigated by the CRPD, as a conceptual frame of reference, outlining the evolution that the concept of disability has undergone by way of background. Section 3 outlines the methods used in this study. Section 4 presents our findings based on deductive identification of three key themes, and related sub-themes. Section 5 discusses those findings, engaging with the relevant academic literature. The final section concludes by highlighting that, while there is a rather mixed picture to be seen in States’ reports, there are also some starting points on which to build towards realisation of the paradigm shift. That could be advanced by more detailed recommendations on Article 30 by the CRPD Committee.

2. The “paradigm shift” as conceptual frame of reference

9As noted above, the CRPD involves a “paradigm shift,” the idea of which we use here to frame and to structure our analysis. In that regard, we highlight in this Section the key features that characterise the “paradigm shift.” We do not engage in a lengthy discussion of models of disability. Rather, we point to other works which do so (among others, Goodley, 2011, Ch. 1; Lawson & Beckett, 2020). We employ the concept of “paradigm shift” to embrace both a social-contextual understanding of disability (Broderick & Ferri, 2019) and a human-rights based approach in which people with disabilities take part in decisions affecting them. We also contend that the implementation of Article 30 must be embedded into the “paradigm shift” that the CRPD entails and must itself contribute this “paradigm shift.”

10It is well known that the social model challenged the medical model of disability. The latter is also known as the deficit model and was dominant until the 70s (but in many ways and subtly, as this article shows, continues to be influential). It approaches people with disabilities as “sick” and in need of medical intervention, locating the “problem” of disability within the person (Kanter, 2015: 8). Relying on medical definitions of disability is conducive to a “labelling” and stigmatising approach, segregated structures, alternative services and, frequently, lack of recognition of capacity to make decisions. Linked to the medical understanding of disability, there is also the charity model, where people with disabilities are conceived of as in need and objects of pity (Watson, 2003). As Kanter (2015) outlines, even civil society organisations perpetuated the segregation of people with disabilities through charity programmes based on the medical model.

11The social model of disability has more recently been associated with attempts to shape disability politics, paving the way for, and complementing, a human rights approach to disability (as argued by Lawson & Beckett, 2020). The UK social model made a crucial distinction between impairment and disability – the latter being a socially constructed experience. It linked disability to the concept of oppression, responding to the medical model and to how, historically, people with disabilities have been treated as objects of pity and as burdens on families and societies. Thus, the social model, in its original formulation, politicises disability and explains disability as a social construct achieved through discrimination and oppression. Oliver (1990: 45) argued that “disablement has nothing to do with the body” which implies the need to dismantle social and physical barriers to participation. The social model has its critics within disability studies, often related to its exclusion of issues to do with impairment or bodies, but critics can also acknowledge its usefulness as a tool and political concept (see Thomas, 2004). While Waldschmidt (2018: 72) considers the social model an “all-rounder,” she also argues that over time many interpretations have “watered it down to reformist aspirations of social inclusion.”

12Disability scholars later emphasised cultural representations of disability, which result in prejudice experienced in everyday interactions (Riddell & Watson, 2003; Watson, 2003). From this perspective, disablement is experienced as the outcome of the witholding of social and cultural recognition (Watson, 2003). Within the field of critical or cultural disability studies, what has come to be central to understanding disability is not disability per se, but what dis/ability tells us about culture, with disability being understood as a social phenomenon that can illuminate culture (Titchkosky, 2003). For Titchkosky (2000) disability must be regarded as a place not only to be spoken about but from which to speak and learn about the human condition. For Waldschmidt (2018: 74) a cultural model of dis/ability differs from the mainstream approach in disability studies in its claim that one should no longer problematise only disability, but rather consider this category as just one side of a coin, whose reverse side also needs investigation, shifting the focus from the margins to the “centre” of society and culture. However, the cultural model remains rather implicit amidst an ongoing discussion of the implications of culture for disability constructions (see Goodley et al., 2019; Waldschmidt, 2018: 74).

13An array of models of disability have emerged over recent decades, but in the context of human rights law and policy, by far the most influential is the human rights model (Lawson & Beckett, 2020), which is enshrined in the CRPD. As referred to in Section 1, the CRPD understands disability as resulting from interaction between persons with impairments and attitudinal and environmental barriers, and emphasises human dignity, inclusive equality and accessibility (Degener, 2016; Ferri & Broderick, 2019; United Nations, 2018). It has been argued that the human rights model is an improvement or historical progression on the social model (Degener, 2016), or, most recently, that the two should be understood as working together in ways that are complementary (Lawson & Beckett, 2020).

14The concept of “paradigm shift” has been used by the CRPD Committee when it reviews each country’s report and responds with detailed Concluding Observations. It sometimes refers to the need for a paradigm shift (under Article 8, awareness-raising). For example, the Concluding Observations on the Austrian initial report highlight how Austrian society has not seen “a complete understanding of the paradigm shift created by the human rights-centred approach in the Convention” and recommend awareness-raising “to effectively transform the old-fashioned charity model of disability” (CRPD/C/AUT/CO/1: paras 21-2; see also Concluding Observations for Belgium, CRPD/C/BEL/CO/1: para. 17). A range of scholarship engages with the idea of “paradigm shift,” sometimes focusing on changes wrought by specific aspects of the CRPD within particular fields or areas of interest. In particular, there is attention to the “paradigm shift” in terms of disability rights (Harpur, 2012), with regard to representation of people with disabilities (Mittler, 2015), and in terms of legal capacity (Quinn, 2011). The “paradigm shift” involves moving from a social welfare response to disability, or to people with disabilities as objects of charity, medical treatment and social protection to a rights-based approach in which people with disabilities can be active members of society, and intrinsic to this is the need to remove barriers and to provide accommodations to facilitate participation (Kayess & French, 2008). In her work focusing specifically on culture, Johnson (2020: 73-4) suggests that the “paradigm shift” involves constituting persons with disabilities as (1) persons with human rights, (2) stressing the right to be involved in decision-making about their lives and their nation’s future through participation in, inter alia, cultural issues, and (3) requiring States to work to remove barriers which prevent the full participation of persons with disabilities in their communities. Johnson also links the emphasis in the CRPD on participation in decision-making to supporting the development of disability cultures, which provide a basis for positive self-identity by persons with disabilities.

15On foot of this scholarly work and, in particular, consistent with the approaches of Kayess and French as well as Johnson, we employed the “paradigm shift” as a conceptual framework to structure the identification of themes in our analysis.

3. Methodology

3.1. Systematic document review and thematic analysis

16This article, which represents the first step in a participatory research project applying a multi-method approach, is based on data gathered from an extensive systematic analysis of reports available on the CRPD Committee website. It relates to EU Member States plus the UK and the EU, and it encompassed reports of States Parties, Lists of Issues, and Concluding Observations made in respect of State reports by the CRPD Committee. This was by way of a systematic document review, adopting a thematic qualitative approach to document analysis. We focused on the approach of each document to participation in culture with, as we outlined in Section 1, specific reference to arts practices and heritage. Our reference period was between January 2008, when the CRPD came into force, and 15 January 2021.

17Document analysis is a form of qualitative research that uses a systematic procedure to analyse documentary evidence and answer specific research questions (Gross, 2018), or as a method for reviewing or evaluating documents combining elements of content analysis and thematic analysis (Bowen, 2009: 27-32). Documents may be treated in a variety of ways, depending on the focus of the study, but a qualitative approach requires examination and interpretation to elicit meaning, gain understanding, and develop empirical knowledge (Bowen, 2009). Thus, qualitative document analysis seeks to make explicit the implications of various formulations and presentation strategies (Wolff, 2004: 289).

Table 1. Reports Reviewed: Periodic Reports of State Parties, Lists of Issues and Concluding Observations published to 15 January 2021

Countries	Number of Reports of States Parties	Number of Lists of Issues	Number of Concluding Observations
EU countries: Austria, Belgium, Bulgaria, Croatia, Cyprus, Czechia, Denmark, Estonia, Finland, France, Germany, Greece, Hungary, Italy, Latvia, Lithuania, Luxembourg, Malta, Netherlands, Poland, Portugal, Slovakia, Slovenia, Spain, Sweden	33	33	22
EU	1	1	1
UK	1	1	1
Total	35	35	24

19We conducted a thematic analysis, paying attention to language used in the documents to describe and interpret various meanings, ideas and social realities reflected in text. Thematic analysis involves examining the data collected, in written or other format, summarising it and drawing out key points by identifying recurrent themes (Tight, 2019) or, as Braun and Clarke (2006) put it, it involves searching across a data set (including a range of texts) to find repeated patterns of meaning. We examined the documents for references to culture, arts and heritage. We then indexed the data and searched for themes that identified patterns (Bowen, 2009; Braun & Clarke, 2006; Coffey, 2013) using a deductive approach, as explained in the subsection below. Our key focus was the approach to arts and heritage within the Article 30 response of States Parties and any related comments or recommendations made by the CRPD Committee in Lists of Issues or Concluding Observations. We also reviewed the content of reports of States Parties on Articles 9 (accessibility) and 21 (freedom of expression and communication) insofar as they related to art practices and heritage. With regard to the EU, in our analysis, we took note of the fact that it has “supporting competences in the area of participation in cultural life” (CRPD/C/EU/1: para. 171).

20In this article, when we refer to reports of States Parties, that is meant to refer to initial reports. Where a country has submitted a subsequent report, we clarify whether we mean the initial report or the combined 2nd/3rd report.

3.2. A deductive approach to thematic analysis

21In qualitative analysis of texts, a deductive approach can be derived from theories, hypotheses or existing systematic arrangements (Kuckartz, 2014), and there can be a combination of inductive and deductive approaches (Gross, 2018; Kuckartz, 2014). Braun and Clarke (2006: 84) characterise a deductive approach to thematic analysis as “top-down” and tending to be driven by the researcher’s theoretical or analytic interest. We adopted a deductive approach, in that we analysed the data from the reports using the concept of “paradigm shift” (as outlined in Section 2) as a framework and as a lens through which we identified the themes that either supported or failed to support evidence of that “paradigm shift.”

22Coffey (2013) cautions that we cannot treat records – however “official” – as firm evidence of what they report but must approach them for what they are and for what they are used to accomplish. Rather, they should establish the meaning of the document and its contribution to the issues being explored (Bowen, 2009). We were aware of the purpose of the three types of reports reviewed. In the case of reports of States Parties, the purpose was to evidence compliance by governments with the provisions of the CRPD, and in the case of Lists of Issues and Concluding Observations, the purpose was to present queries, comments and recommendations of the CRPD Committee designed to improve that compliance informed by a broader set of inputs, including shadow reports from civil society organisations. Our discussion here engages most with States’ reports and Concluding Observations, while also reinforcing points made by reference to Lists of Issues. We suggest that qualitative research can be enriched by a critical attention to the gathering and analysis of documents of various kinds (Coffey, 2013). In that connection, in order to further support our thematic analysis of States’ Reports and Concluding Observations, which, in the course of the project, will be extended and enriched with empirical evidence, we have reviewed a selection of shadow reports submitted under the CRPD. In this regard, we attempt to reflect, what Wolff (2004: 289) characterises as the “conversation” between the document(s) being investigated and the subsequent or proceeding texts. Moreover, in order to contextualise the systematic document analysis, we refer to scientific literature to engage with the themes identified.

4. Trends in cultural participation of persons with disabilities: Findings of the thematic analysis

23Our review reveals that States’ reports varied in the degree of attention that they gave to Article 30, and to the aspects of cultural participation mentioned or emphasised (that is, arts, culture and also sport, tourism and broadcasting). Sometimes there can be a sense that participation in culture is less important than other areas of life. This, for example, was acknowledged in a shadow report from Croatia (Disability Ombudswoman of Croatia, 2014), which suggested that cultural activities are not considered “vital.” However, using the concept of “paradigm shift” to deductively shape our analysis of the selected documents, we identified common trends and recurring themes in relation to the way people with disabilities are portrayed in the reports, with regard to the way cultural participation is conceived of, and with regard to how barriers to participation are understood and said to be addressed. Namely, we identified three overall themes. The first (within which there are three sub-themes) deals with whether disability is perceived as a social construct as evidenced by a focus on how barriers are perceived and on what accommodations are considered necessary. The second theme represents a throw-back to the medical model in how people with disabilities are constituted, and the third identifies where, by contrast, people with disabilities were constituted as holders of cultural rights or where there was recognition of disability culture(s) or identities. The thematic analysis also shows that there can be different, somewhat contradictory, understandings within the same report.

4.1. Disability as a social construct? A still blurred awareness of environmental and social barriers to cultural participation

24The paradigm shift involves the idea of disability as stemming from the interaction between impairment and external barriers and should entail a strong awareness of what barriers exist in the area of culture and of what facilitates access. The CRPD adopts an all-embracing concept of accessibility in Article 9, and this informs Article 30. Under this main theme, we identified three sub-themes. The first, captured concern with physical inaccessibility, which was common across reports reviewed. This somewhat tallies with the wealth of scholarship highlighting the need for physically accessible environments for people with motor and sensory impairments (Mastrogiuseppe, Span & Bortolotti, 2020). The second sub-theme relates to broader awareness of barriers and accessibility of content of arts and heritage products intended to be inclusive of a diverse range of people with disabilities, and this awareness is, we suggest, more limited but developing. The third sub-theme concerns barriers related to other issues, social, attitudinal and financial, which was very limited in responses to Article 30.

4.1.1. Emphasis on physical barriers

25Physical barriers may be easier to recognise than attitudinal barriers (Bickenbach, 2011). In terms of identification of specific barriers, States’ reports often focus on physical access to venues, and/or indicate steps taken or being planned to address this. Our review shows that this is frequently the first issue addressed in States’ Article 30 CRPD responses. Such references (to physical accessibility/inaccessibility of venues like museums, galleries, theatres, libraries, or heritage sites) occur in the Article 30 responses in reports from 21 countries (out of a total of 26 States that had filled reports) although with different degrees of depth and areas of focus (see Table 2).

26Interestingly, a few reports quantify the physical accessibility of certain types of venues. For example, according to the report from France, fully accessible cinemas account for 73 % of admissions (in 2014) (CRPD/C/FRA/1: para. 300). The initial report from Germany suggests that 84 % of cinemas participating in a study were “accessible” but that only 6 % could provide aids for Deaf or hearing impaired people (in 2009) (CRPD/C/DEU/1: footnote 66 to para. 263). The same report, however, admits that “not all buildings which serve cultural purposes are barrier-free, and hence they are not accessible for all people equally,” and that the lack of accessibility was highlighted by associations of persons with disabilities (para. 263). The Latvian report suggests that accessibility measures have taken place at 54 % of accredited museum visitor sites (or in 76 museums) and this includes accessibility mainly for people with “functional impairments” but also accessibility for people with other kinds of impairments (CRPD/C/LVA/1: para. 364). Sometimes States specifically refer to addressing the needs of wheelchair users in this context (see the Estonian report, CRPD/C/EST/1: para. 220).

Table 2. Reports of State Parties: Physical Access to Arts/Culture

Countries whose reports refer to physical accessibility of arts/cultural infrastructure (in initial reports and/or Combined 2nd/3rd reports)

Austria, Belgium, Bulgaria, Croatia, Czechia, Denmark, Estonia, Finland, France, Germany, Greece, Hungary, Italy, Latvia, Luxembourg, Malta, Netherlands, Poland, Slovakia, Slovenia, Sweden

4.1.2. Moving towards a multidimensional approach to accessibility of cultural content

28In the case of art galleries and other cultural venues, the report from Czechia states that museums progressively “make all expositions and exhibitions accessible” (CRPD/C/CZE/1: para. 449). That report also instances a venue with a tactile exposition, the digitalisation of content, and instances the Museum of Puppet Culture as enabling visitors to engage by touch; a festival of Pantomime and Motion Theatre is also referenced where Deaf or hearing-impaired people are said to constitute over half of participants (CRPD/C/CZE/1: paras 456-60). Other examples are seen in the Estonian report, which mentions theatres using text strips and sign language interpretation, loop systems, and also subtitling of films and inclusivity of cultural sites, museums and art galleries (CRPD/C/EST/1: paras 220-28). The report of Latvia outlines measures within Museums to make the content available to people with a broad range of impairments (CRPD/C/LVA/1: paras 365-70). The EU report refers to Europeana, as a portal that “brings together digitised content from Europe’s museums, archives, libraries and audiovisual collections,” and features content “designed to be universally accessible” (CRPD/C/EU/1: para. 175). In addition, a post-prototype version will be produced for blind people (para. 175). Furthermore, the European Commission is committed to ensuring that accessibility criteria are taken into account in the context of the European Capitals of Culture award (para. 175).

29References under Article 30 CRPD to efforts to make library material more accessible for people with visual impairments were common. For example, the initial report from Denmark refers to a state-owned library producing audio books, e-books and Braille for visually impaired and dyslexic people (CRPD/C/DNK/1: para. 337). Much less common were references to Sign Language libraries, but the Finnish report refers to one (CRPD/C/FIN/1: para. 444). Also unusual were references to visual arts being made accessible for people with visual impairments. However, the Estonian report refers to improvements to the accessibility of the Art Museum of Estonia for “mobility, visual, hearing and intellectually impaired people” (CRPD/C/EST/1: para. 224).

30Film is another area of focus in some reports. For example, the initial German report states that the “expansion of subtitling and audiodescription, can be considered in order to implement accessibility in film and on television” (CRPD/C/DEU/1: para. 174). It also highlights that the Film Promotion Act (Filmförderungsgesetz) supports audiodescription and subtitling, as well as providing for incentives “for the creation of barrier-free versions of cinema films” (CRPD/C/DEU/1: para. 262). The second/third report from Denmark (CRPD/C/DNK/2-3: Annex 1: para. 17) mentions funding being made conditional on films having subtitles and an experimental scheme involving audio description. Other reports also highlight initiatives to support accessibility of film (e.g. reports from Slovakia, CRPD/C/SVK/1: paras 382-84; and France, CRPD/C/FRA/1: para. 300).

Table 3. Reports of State Parties: Accessibility of Cultural Content

Countries whose reports refer to accessibility of content of various types, including films and museums (in initial reports and/or Combined 2nd/3rd reports)

Austria, Belgium, Croatia, Czechia, Denmark, Estonia, Finland, France, Germany, Italy, Latvia, Lithuania, Luxembourg, Poland, Slovakia, Slovenia, Spain, Sweden

Note: The above list includes reports that maintain a very limited focus on these issues, focusing, for example, on access only to one sector or one form of content.

Table 4. Reports of State Parties: Copyright Exception

Countries whose reports refer to copyright exceptions (in initial reports and/or Combined 2nd/3rd reports)

Austria, Belgium, Bulgaria, Denmark, Finland, France, Germany, Greece, Hungary, Italy, Lithuania, Netherlands, Poland, Slovakia, Sweden, UK

33The need for enhancing the range of accessible formats – sign language interpretation, Braille, subtitles, Easy Read, augmentative and alternative modes of accessible communication for people with intellectual or psychosocial disabilities – is often raised by the CRPD Committee in Concluding Observations under Article 21 CRPD (dealing with freedom of expression and access to communication). A common recommendation is for more access to sign language interpretation or investment in training of sign language interpreters. Typically, these recommendations cross a range of areas of life such as access to justice, communication or public information. Only rarely are there specific Article 21 recommendations on the need for interpretation or other accessible formats in access to culture.

Table 5. Concluding Observations from the CRPD Committee: How they address Article 30

How Article 30 is addressed	State Parties in respect of which Concluding Observations have been issued
No recommendations made	Austria, Hungary, Latvia, Poland, Spain (CRPD/C/ESP/CO/1)
Recommendations focus on copyright exceptions and/or ratification or implementation of the Marrakesh Treaty	Belgium, Cyprus, Czechia, Denmark, Germany, Italy, Portugal, Slovenia, Spain (CRPD/C/ESP/CO/2-3), Sweden, the European Union
Recommendations focus on copyright exceptions and/or ratification of the Marrakesh Treaty but also make recommendations that are broader in scope	Bulgaria, Croatia, Greece, Lithuania, Luxembourg, Malta, Slovakia, UK

Note: Two sets of Concluding Observations had been issued for Spain.

4.1.3. Social, attitudinal and financial barriers

34The important role of arts practices as visible forms of cultural expression makes it an area of unique value in respect of disability with potential for challenging how the social order is communicated and reproduced. However, this potential remains untapped, not least because of social and attitudinal barriers and because of stigma, which are often the most difficult to counter (Bariffi, 2018). Our research suggests a limited and rather patchy approach to social, attitudinal and financial barriers to cultural participation across the reports reviewed, and we contend that there should be a more precise identification of these kinds of barriers and of systematic approaches to addressing them.

35We did find these barriers acknowledged in States’ reports. For example, the Estonian report refers to trainings and seminars for museum staff (CRPD/C/EST/1: para. 226; see also Latvian report, CRPD/C/LVA/1: para. 368), and the initial Slovakian report acknowledges efforts to educate people working in the cultural sector to “eliminate mental and physical barriers” (CRPD/C/SVK/1: paras 386-90; see also Greek report, CRPD/C/GRC/1: para. 274). The initial Belgian report mentions the need for measures to increase accessibility of infrastructure, and also to increase “receptiveness to sign language or subtitling at cultural events” (CRPD/C/BEL/1: para. 173).

Table 6. Reports of State Parties: Special Arrangements for Entry to Venues

Countries whose reports refer to some form of free or discounted entry to museums or other venues for people with disabilities and/or for companions (in initial reports and/or Combined 2nd/3rd reports)

Belgium, Bulgaria, Czechia, Estonia, Finland, Greece, Italy, Lithuania, Slovakia, Spain

4.2. Throw-back to the medical model: Cultural participation as therapy or education

37The second theme from our deductive analysis deals with how people with disabilities are constituted in the cultural sphere. Article 30 responses suggest a patchwork in terms of how participation in arts and culture is understood, and in relation to what the motivation for this is – including motivations based on educating others, promoting health, compensating for health challenges, or fostering social inclusion. Thus, a medical, or therapeutic, or charitable understanding of disability is evident in reports of State Parties.

38The Polish report refers to “library therapy and art therapy” for blind people (CRPD/C/POL/1: para. 514) and the report from Czechia includes reference to “art-therapy” and to a programme of support to projects focused on exploiting the “therapeutic function of culture in order to compensate for disadvantages on account of health” (CRPD/C/CZE/1: para. 452 – emphasis added). Another report refers to public libraries organising home deliveries for people unable “to visit the library due to health reasons” (Estonian report, CRPD/C/EST/1: para. 230). Sometimes a therapeutic approach was linked to ideas of tackling social exclusion. For example, the Lithuanian report refers to the “National Programme of Social Integration of the Disabled,” listing a range of arts and cultural activities supported, including “social rehabilitation services” and to cultural events aimed at “improvement of the status of the people with disabilities in the society and reduction of their social exclusion” (CRPD/C/LTU/1: paras 304-6 – emphasis added).

39Sometimes, States’ reports refer to cultural activities in terms of education about disability issues amongst the general public or people working in cultural sectors. There may, of course, be valuable aspects to such awareness-raising initiatives, but some of these references seem to suggest that disability is still constituted as an individual problem or an issue requiring a charitable response. For example, Hungary’s initial report mentions support for people with disabilities “with regard to public education programmes” and public education conferences are described as opportunities for people with disabilities “to report their own problems” (CRPD/C/HUN/1: para. 236 – emphasis added). There can also be explicit links made between cultural events and charitable donations or fundraising efforts (e.g. Bulgarian report, CRPD/C/BGR/1: para. 242).

40Overall, this emphasis on therapy, education of others on “problems” of persons with disabilities, charitable aims and (to some extent) links to issues of social inclusion/exclusion reveal an understanding of disability within the responses to Article 30 of some State anchored to a medical understanding of disability, instead of the social-contextual and rights-based aims embodied in the CRPD’s “paradigm shift.” Furthermore, it clearly does not reflect the shift envisaged in cultural disability studies to problematising what is perceived as “normal” or “mainstream” culture.

4.3. People with disabilities as holders of cultural rights and supporting disability cultures

41We identified, as the third theme, the recognition of people with disabilities as holders of cultural rights, for which there was some evidence. This implies the acknowledgement that persons with disabilities should not only have the right to access culture, but also the right to make decisions and to create culture, including, therefore, not only opportunities for amateur participation, but also possibilities to shape culture as professional artists and as workers in the cultural sphere. It also means developing supports for disability culture and for development of positive self-identities.

42The need for cultural participation as self-expression or as an amateur activity was evident in the reports of many countries. For example, the Latvian report (CRPD/C/LVA/1: para. 370) refers to various opportunities for Deaf people, citing “a variety of creative self-expression measures: free time activities […] educational and informative measures […] and amateur performances which is one of the most popular area of leisure for deaf people.” The Lithuanian report mentions “artistic ability development classes“ to provide “the opportunity to express their abilities in a variety of forms” (CRPD/C/LTU/1: para. 305), and the initial Slovakian report discusses the availability of “active and passive culture” (CRPD/C/SVK/1: para. 390).

43There is a limited awareness shown in States’ reports of people with disabilities as creators of culture in their own right, or as rights holders who make decisions in the cultural sphere, but there was some evidence of this. The reports of eight countries (or their Annexes) refer to disabled or Deaf artists or to artists or actors with disabilities (see Table 7). Sometimes these are cursory references, without any elaboration. For example, the Portuguese report addresses arts and culture briefly in one paragraph (CRPD/C/PRT/1: para. 273), mentioning services “for persons with disabilities, both as an audience and as artists.” The UK report alludes to grants that promote the work of disabled artists (CRPD/C/GBR/1: para. 328).

Table 7. Reports of State Parties: People with Disabilities as Artists

Countries whose reports refer to professional engagement in the arts or to people with disabilities as artists (in initial reports and/or Combined 2nd/3rd reports)

Croatia, Czechia, Denmark, Portugal, Slovakia, Spain, Sweden, UK

Note: Reports from other countries instance initiatives that, while they do not explicitly refer to professional artists with disabilities, may involve them in practice.

44Other reports, while making no explicit reference to professional artists, adopt somewhat ambiguous formulations. Examples include references to cultural or artistic “production(s)” (Italian report, CRPD/C/ITA/1: para. 168; second/third German report, CRPD/C/DEU/2-3: para. 62) or to artistic “practice” (Netherlands report, CRPD/C/NLD/1: para. 335; French report, CRPD/C/FRA/1: para. 301). In these cases, the use of words such as “production” or “practice/practising” seem to suggest a professional engagement, but this is not fully evident. Other reports refer generally to initiatives fostering cultural participation by people with disabilities. It is possible that those may in fact include professional artists with disabilities, but this remains unclear (see, for example, the Luxembourg report, CRPD/C/LUX/1: para. 393). There are also references to events or festivals organised by people with disabilities, an example being performances in sign language mentioned in the Latvian report (CRPD/C/LVA/1: para. 370).

45Several reports are, nonetheless, quite explicit about the need to develop both amateur and professional participation, and/or mention arts organisations that include disabled and non-disabled artists. For example, the initial report from Sweden recognises “personal creation” and opportunities to share in “professional artistic creation” (CRPD/C/SWE/1: para. 282). That report also states that it “is becoming increasingly common for professional theatre and dance groups to include actors and dancers both with and without disabilities” (para. 289). It instances the National Theatre, within which a Quiet Theatre produces drama in sign language (para. 287). The Croatian report refers to financial support for projects “that sensitise the public for artistic work of persons with disabilities and specific theatres of persons with disabilities” (CRPD/C/HRV/1: para. 217).

46However, we found almost no explicit references within the CRPD reports reviewed to employment of people with disabilities within arts and cultural industries. The Slovenian report (CRPD/C/SVN/1: para. 236) was an exception, referring to “projects to improve the employability of vulnerable groups in the field of culture” characterised as a means to support social inclusion. The Estonian report also mentions “several” people with disabilities having qualified as data entry clerk in museums (CRPD/C/EST/1: para. 226).

48Still other reports refer to lack of legislative instruments recognising and protecting sign language or they emphasise measures providing for the use of sign language. For example, the report from Luxembourg mentions that sign language enjoys “de facto recognition” (CRPD/C/LUX/1: para. 237), but the related Concluding Observations recommend expediting “enactment of legislation to recognize German sign language” and “promoting other sign languages to respect the multilingual character of the State party” (CRPD/C/LUX/CO/1: para. 39).

49References to Braille and to other alternative forms of communication were common in reports from States, often in responses to Article 21 CRPD and in relation to access to information and communications and were not framed in terms of cultural or linguistic identity. There is no recognition of users of Braille or other forms of communication as cultural or linguistic minorities. This is perhaps unsurprising given that Deaf people and sign language users are the sole group specified in Article 30 CRPD in the context of linguistic identity, and the only group that has advocated for recognition as a minority. Thus, outside of Deaf culture or sign language, ideas about disability identities, or disability culture more generally, were very rare in the reports reviewed. However, there were a small number of references to events that seem designed to highlight or celebrate the lives or achievements of people with visual impairment. For example, the Lithuanian report refers to events organised by the Lithuanian Library to mark “important dates in the lives of public figures who were blind” (CRPD/C/LTU/1: para. 294). The initial Slovakian report had some references to the “culture of persons with sight disabilities” and, in the context of museums and galleries, to the development of “the culture of the disabled” (CRPD/C/SVK/1: paras 379, 385).

50On the whole, it is possible to detect an understanding of Deaf people as having a distinct cultural or linguistic identity (even if that is not always fully supported in practice) and a limited, if developing, sense of people with disabilities as contributors and shapers of culture. However, there is much yet to be done to realise the provisions of Article 30(2) CRPD, which involve ensuring that measures are taken that enable people with disabilities to “develop and utilize their creative, artistic and intellectual potential, not only for their own benefit, but also for the enrichment of society.”

5. Evidence of paradigm shift?

51As indicated above, the approach to Article 30 CRPD of the States Parties under consideration varies. However, on a general note and before further discussing the findings of the thematic analysis, our review makes evident that a lengthy response relating to arts and heritage under Article 30 is not necessarily representative of a thoroughgoing approach to addressing cultural participation. For example, there are many initiatives referred to under Article 30 in the report from Bulgaria (CRPD/C/BGR/1) and to a lesser extent in the report of Croatia (CRPD/C/HRV/1). However, the degree to which this might represent a comprehensive approach at a national level to meet the objectives of Article 30 CRPD remains unclear. In fact, in the case of those two countries, subsequent Concluding Observations express concern about levels of participation of persons with disabilities in cultural life and contain recommendations aimed at increasing participation (CRPD/C/BGR/CO/1: paras 65-6; CRPD/C/HRV/CO/1: paras 47-8).

52It is also interesting that States’ reports present few details on levels of cultural participation by people with disabilities. The reports of two countries cite surveys suggesting that cultural participation by people with disabilities is relatively low (Estonia, CRPD/C/EST/1: para. 227; UK, CRPD/C/GBR/1: para. 327; see also Denmark’s reference to under-representation in “general association life,” CRPD/C/DNK/1: para. 346). The Estonian report cites a series of statistics about cultural participation, stating that 54.1 % of people with disabilities do not participate in any cultural activities (compared to 35.5 % of non-disabled people) and that only 5.6 % participate regularly (CRPD/C/EST/1: para. 227).

53We contend that a systematic, mainstreamed approach to culture informed by the potential for cultural transformation that the CRPD represents (Scully, 2012) is yet to be realised. This need for mainstreaming was articulated comprehensively in a document accompanying a shadow report from the National Confederation of Disabled People of Greece (NCDP) (2019: 20), which made the following recommendation:

“To mainstream the disability dimension in every cultural policy, process, action, measure and program to ensure the human right of persons with disabilities and chronic diseases to full and equal participation as public, employees and/or creators-artists in the cultural heritage, sites, material, services as well as in the modern culture...”

54Delving more into our deductive thematic analysis shows that States’ reports present a mixed picture, or patchwork, in terms of how they reflect and realise the “paradigm shift” embedded in the CRPD in relation to cultural participation. The analysis shows that medical or charity models of disability are still influential, and engagement with culture is sometimes linked to the mere desire to promote health, enhance rehabilitation or to foster social inclusion. In that connection, we contend that State Parties still problematise disability, rather than locating it within mainstream culture (Waldschmidt, 2018: 74).

55A “throw back” to the medical model tallies with a still somewhat limited understanding of barriers faced by people with disabilities. It has recently been argued that the current focus on the rights of people with disabilities to participate in social and cultural life suggests the need to rethink the concept of accessibility (Mastrogiuseppe, Span & Bortolotti, 2020). Our analysis of States Parties’ reports nonetheless suggests that there is a developing sense of the need for a broader approach to accessibility, such as access to the content of cultural products for people with a broad range of disability-types. We found, however, that there continues to be an emphasis on barriers as mostly constituted by physical inaccessibility of cultural buildings. Clearly, the latter is an important aspect of cultural participation, especially for people with physical impairments, but this falls short of the conceptualisation of disability advanced by the CRPD. Furthermore, such a developing awareness is somewhat counterbalanced by a far more bittersweet picture emerging from shadow reports submitted to the CRPD Committee by civil society groups, which, where they deal with culture, detail inadequate accessibility of cultural offerings. For example, in their shadow report, the Belgian Disability Forum (2014) suggests that while accessibility of cultural activities is guaranteed under regional regulations, implementation is lacking. A report coordinated by the Disabled People’s Organisations Denmark (DPOD) (2019: para. 48) suggests that many cultural institutions – such as theatres, museums and cinemas – are not accessible either in terms of physical accessibility of buildings or digital accessibility of apps, websites or content. Similarly, the shadow report from the German CRPD Alliance (BRK-Allianz, 2013: 90-1) suggests that both physical accessibility and accessibility of content is inadequate across a range of cultural and heritage venues and for people with different kinds of impairments.

56Our analysis also ascertained limited explicit recognition that each person with a disability is unique and may require specific and diverse supports to access culture, that can include tactile and sound signage elements (e.g. Braille, Easy Read, pictograms or audio description), cognitive accessibility in the environment and in information, and social accessibility (e.g. training of personnel, facilitating access for interpreters and personal assistants, and adapting times and rhythms to the needs of each participant) (Universidad de Deusto, 2019). In that regard, there seems also to be a limited acknowledgement of the value of reasonable accommodation when it comes to cultural rights.

57References to social, attitudinal or financial barriers to participation in arts or heritage were quite limited, as was recognition of a potential role for people with disabilities to transform arts practices and hence for challenging how the social order is communicated and reproduced. States Parties often recognise the linguistic identity of sign language users, or suggest that measures are planned towards that recognition, but there is little evidence that recognition of cultural identity is apprehended more broadly as applying to other groups of people with disabilities. Also, shadow reports frequently contend that, in practice, support for Deaf culture is inadequate. For example, the German BRK-Allianz (2013) report refers to inadequate support for the cultural identity of people who use Plain Language or German Sign Language, and a report from France suggests that sign language is not as broadly recognised as the government report suggests (Fédération Nationale des Sourds de France, 2019; see also report from the PanCyprian Alliance for Disability, 2017). But, even within disability studies, the issue of the existence of a “disability identity” (other than as relates to Deaf people) is a contested issue (Davis, 2013: Siebers, 2008: 11) as is the conceptualisation of disability culture(s) (Johnson, 2020). However, there are arguments for recognition of various cultural perspectives of people with disabilities and of the role of a range of art-forms in articulating those shared cultures (Johnston, 2020). For Jakubowicz and Meekosha (2003: 190) disability culture seeks to revalorise disability experiences and turn upside down the devaluation that society accords people with disabilities, arguing that disability culture affirms “different embodiments through literature, drama, sport and music.” Our review shows that these issues have yet to be reflected to any extent in how reports of States Parties from EU countries address Article 30 CRPD and in how the CRPD Committee responds to them.

58In our analysis of States Parties’ reports, we also detected a rather limited understanding of people with disabilities as makers and shapers of culture in their own right. References to employment within cultural organisations were also almost non-existent.

59On the whole, we contend that the still narrow approach to accessibility, the limited awareness shown in the States’ responses on Article 30 CRPD about disability identities, the evident focus on people with disabilities as consumers of culture or participants at an amateur level fall short of the obligations of Article 30 CRPD. Most significantly the perspective adopted by States Parties to cultural participation still fails to realise the overall “paradigm shift” brought about by the CRPD. In our analysis, however, we noted that the CRPD Committee has, thus far, provided limited guidance in the field. The Lists of Issues and Concluding Observations from the Committee often show a rather narrow focus on copyright issues in their comments and recommendations on Article 30 CRPD, which does not support a more comprehensive approach to cultural participation. In short, while there is evidence of some change, there is untapped potential for arts practices to challenge the cultural order, and to realise the role that the CRPD could play as a transformative instrument for our cultural-moral understanding of disability (Scully, 2012: 73).

6. Concluding remarks

60In this article we argued that the implementation of Article 30 CRPD must be embedded within the “paradigm shift” that the Convention entails and must itself contribute this “paradigm shift.” The CRPD has potential to effect a cultural transformation in how disability is understood and is consistent with the emphasis within critical or cultural disability studies on the need to analyse and transform what is perceived as mainstream culture from the perspective of disability. As the former Special Rapporteur on the Rights of Persons with Disabilities argues, neither awareness-raising programmes nor the generalisation of anti-discrimination measures will alone suffice for disability to be embraced as part of human diversity and a cultural transformation is needed in how society relates to the difference of disability (Devandas-Aguilar, 2019).

61Our review suggests that data collection on participation in culture of persons with disabilities is scant. In order to effect change, a systematic approach to gathering information on persons with disabilities working in the cultural sectors, and accessing cultural activities, is vital. Data collection could be informed by outcome indicators elaborated by the Office of the High Commissioner for Human Rights (OHCHR) in support of a disability inclusive 2030 Agenda for Sustainable Development. Outcome indicators (which complement structural and process indicators) measure the results of efforts to further human rights. Among those indicators, it would be important to gather information on the number and proportion of persons with disabilities accessing museums, galleries, libraries and cultural venues and sites, as compared to other persons, on the time spent by persons with disabilities in cultural activities, as compared to other persons, and on the number and proportion of persons with disabilities who receive public financial support for cultural programmes and for higher education and professional development related to the area of cultural life. All data should be disaggregated by sex, age and type of disability to enhance an intersectional approach.

62Our review also shows that some aspects of the “paradigm shift” may be developing. We base this on changes we identify in how disability is understood in reports of some countries, to a broadening out of how accessibility is conceived of in some reports, to a widespread recognition of cultural identity of Deaf people or sign-language users, and of a limited, but developing, recognition of the need to support professional artists. Even if we see elements of a medical or charitable model still in evidence in relation to Article 30 CRPD, there is some evidence of a developing understanding of people with disabilities as rights-holders, as autonomous beings and of participation in culture as an expression of personhood and dignity. This provides a basis for more in-depth queries and recommendations on culture by the CRPD Committee, which, as yet, have tended to focus largely on issues of copyright and the Marrakesh treaty. Those recommendation should direct attention of States Parties to all the aspects of cultural participation envisaged in the CRPD and support them in realising the “paradigm shift” associated with the CRPD.

63The adoption of a comprehensive approach to cultural participation of persons with disabilities would be vital to challenge negative views of people with disabilities, assumptions that disability art is merely a hobby or form of therapy rather than a professional endeavour, and could ultimately transform how society understands and relates to disability.