Barriers to cultural participation by people with disabilities in Europe: a study across 28 countries

Abstract

This article discusses the findings of a new qualitative study conducted in 28 European countries, examining barriers to cultural participation as perceived by representatives of organisations of people with disabilities. The study explores barriers operating in all art-forms as well as in cultural heritage, and it encompasses participation of people with a broad range of disability types both as audiences and as creators of culture. The article evidences that a range of interlinked barriers are commonly perceived by people with disabilities in five areas – lack of effective laws and policies; inadequate services and/or funding; negative attitudes; lack of accessibility; and lack of involvement of persons with disabilities in cultural organisations. The article argues for more systematic approaches to enforcement of laws and policies, for greater knowledge about disability to be embedded within cultural organisations and policymaking, and for employment of people with disabilities at all levels within cultural sectors.

Points of Interest

• This article presents research on participation by people with disabilities in cultural life (such as theatre, cinema, libraries, etc.) from 28 European countries.

• This research sought the views of people representing organisations of people with disabilities, of Deaf people and of organisations working on arts and disability.

• It found that several barriers to participation (as audiences and artists) exist in all countries considered and across all disability types.

• It identifies and categorises barriers operating in five areas – lack of effective laws and policies; inadequate services and/or funding; negative attitudes; lack of accessibility; and lack of involvement of persons with disabilities in cultural organisations.

• The research highlights the need for existing laws to be fully applied and enforced, and for good practice, where it exists, to be made more widely known. It also shows that cultural organisations and policy-makers need to acquire greater knowledge about disability.

Keywords:

• barriers
• culture
• participation
• artists with disabilities

Introduction

Barriers, both attitudinal and environmental, are central to how disability is defined in the preamble and in Article 1 of the UN Convention on the Rights of Persons with Disabilities (CRPD), which states that disability results 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’. In terms of social participation as broadly conceived, cultural participation is of key importance, as it is ‘one of the essential dimensions of life, both for persons with disabilities and for those without disabilities’ (Tatić 2015, 6). It can also mean that stereotypes are challenged, that self-realization and recognition are pursued, acknowledgment is obtained, and overall quality of life is improved (Bantekas et al. 2018, 874). Furthermore, culture has potential to promote fuller enjoyment of human rights, including by challenging discrimination (Bennoune 2018). Yet, as Weisen (2012) argues, inclusive design of cultural services remains an after-thought worldwide. A report from the European Parliament (2018) recognises that further action is needed in Europe to remove barriers for people with disabilities to cultural infrastructures and activities.

In this article we present the results of a new empirical study (carried out from 2021 to 2023) which sought to identify which barriers to cultural participation still persist and cut across different types of disability and geographical areas. In particular, the study investigated barriers as perceived by participants who represented organisations of people with disabilities, organisations of Deaf people and organisations engaged in disability arts (whose recruitment is elaborated upon below). This research was carried out as part of a broader research project investigating the protection of the right of persons with disabilities to take part in cultural life in the European Union (EU) legal order. Our choice of the term ‘people/persons with disabilities’ is consistent with the CRPD, which represents the global legal standard on disability, while we acknowledge that terminology in the field remains contested.

We use the term ‘barriers’ in a way that is consistent with the CRPD and the World Report on Disability (WHO (World Health Organization) and The World Bank 2011, 302), where barriers are ‘factors in a person’s environment that, through their absence or presence, limit functioning and create disability’. We include barriers to both cultural consumption (i.e. enjoyment of other people’s creation) and creation (i.e. possibility for personal expression) (EPRS (European Parliament Research Service) 2017). We understand culture as encompassing cultural heritage and an array of creative and arts practices ‘associated with different art forms, including literature, dance, music, theatre, visual arts and so on’ (Caust 2019, 17).

This empirical research builds upon on a narrative literature review carried out to identify and classify current understandings of barriers and facilitators to cultural participation by people with disabilities (Leahy and Ferri 2022a). That review noted that dismantling physical barriers is sometimes prioritised and can be taken as sufficient for a cultural venue to be deemed accessible (Swedish Authority for Participation 2016; Muscarà and Sani 2019). It highlighted numerous barriers identified by previous research relating to cultural access as audience, and to the accessibility of cultural products, services and information for people with a range of impairment types (see Rix, Lowe, and the Heritage Forum 2010; European Blind Union 2012; Primorac, Obuljen Koržinek, and Uzelac 2017). Notably this narrative review also shows the limits of such previous research, which is often focused on certain groups (such as people experiencing one impairment type) or on a single or a limited number of venues or organisations, or case studies (see also Jongerius et al. 2020). For example, there is a dearth of studies assessing the accessibility of a set of museums based on a comprehensive array of accessibility strategies (Mesquita and Carneiro 2016). Barriers to cultural creation (as opposed to consumption) have received even less focus in research. Those identified in the literature review include lack of adequate training/education for people with disabilities who wish to work in the arts, lack of knowledge about disability on the part of arts professionals/educators, and negative, exclusionary attitudes that preclude professional participation (Leahy and Ferri 2022a). In addition, scholarship has evidenced negative attitudes that inform assumptions that disability art is merely social, educational, or a form of therapy, not a professional endeavour (Aujla and Redding 2013; Saur and Johansen 2013: 258; Bang and Kim 2015). This in turn hampers access to cultural opportunities, education/training, and funding.

Further to this introduction, the methodology is presented. We then present and discuss the results of our empirical research and examine the range of interlinked barriers identified that not only limit the lives of people with disabilities, but also diminish diversity and cultural expression by significantly excluding expressions of the voices, experiences and distinct cultural or linguistic identities of people with disabilities. The concluding section highlights that, while improvements have occurred in many countries, policymakers need to take a more systematic approach and to move on from intermittent or fragmentary projects. This coherent approach must be underpinned by the full implementation and enforcement of effective laws, policies, guidelines and standards. Central to making change is the need for greater knowledge within the cultural sector, requiring more systematic involvement and employment of people with disabilities at all levels, including in leadership, decision-making bodies and in monitoring.

Methodology

As noted in the introduction, we conducted empirical research to identify the main barriers to cultural participation as perceived by key stakeholders of people with disabilities across Europe as part of a broader study exploring the extent to which the protection of cultural rights of people with disabilities and the promotion of cultural diversity, intersect and complement each other in the EU legal order. Our aim was to examine how organisations working on the rights of persons with disabilities or Deaf people understand the barriers to access, production and enjoyment of cultural goods and services. This research constitutes the bedrock for the legal analysis that is integral to our broader research project. Our approach aligns with the CRPD, which requires the involvement of people with disabilities and their representative organisations in its implementation, and places an emphasis on the participation of the disability movement in disability research (see Callus 2014). Qualitative methods were chosen for the empirical research as they enabled us to hear how participants perceived and prioritised barriers and facilitators and because they are concerned with the meaning people attach to things in their lives and with understanding people from their own frames of reference (Taylor, Bogdan, and DeVault 2015; Hammarberg, Kirkman, and de Lacey 2016).

We pursued a purposeful sampling strategy and recruited representatives of 63 organisations drawn from 28 European countries (27 EU countries and the UK), with at least two from each country. Those invited to participate were representatives of: (1) umbrella organisations working at national level within their countries and representing people with a range of disability types, (2) national organisations of Deaf people, and (3) organisations working in arts and culture. Of the 63 participating organisations, 27 qualify as DPOs, 11 were organisations of Deaf people, and 25 were organisations working on arts and disability. In each case, we targeted organisations that were ‘of’ rather than ‘for’ people with disabilities to use the distinction famously made by Oliver (1984, 1990), while also recognising the ‘pluralism’ of the disability rights movement (Bagenstos 2009, 3; Callus 2014; Lejeune 2023). Thus, we prioritised organisations that characterise themselves as led by people with disabilities or Deaf people, or those that ‘aim to empower people with disabilities to take control of their own lives and to influence public policies and practices’ not charities or service providers (Lejeune 2023, 230). Our selection of umbrella organisations was drawn from the organisations that are full members of an umbrella NGO at EU level, which are required to be primarily governed by people with disabilities based on the definition in General Comment 7 of the Committee on the Rights of Persons with Disabilities requiring that they be ‘led, directed and governed by persons with disabilities’ (para 11). Our decision to recruit representatives of organisations of Deaf people was similarly informed and took account of the fact that they sometimes organise separately or pursue a ‘somewhat separatist ideology’ (Bagenstos 2009, 3), and also considering the prominence given to Deaf culture in the CRPD. In a few cases, where a national umbrella organisation did not agree to participate or where no such organisation was affiliated with the aforementioned NGO selected at EU level, we engaged with another organisation in that country, such as a national organisation of blind people or organisations working on independent living. In our DPO category, the vast majority of participant organisations (all but three) explicitly characterise themselves in a way that is consistent with a disability-led approach. The three organisations that do not, instead characterise themselves either as an organisation of parents and families of children with disabilities, or as an organisation engaged in advocacy on the rights of persons with disabilities.

Our third category - organisations working on arts and disability – involves a field in which there is a continuing challenge about terms, aims, and approaches (Hadley and McDonald 2019). Consistent with approaches of scholars and practitioners, we prioritised associations of artists with disabilities or companies where artists with disabilities engage in professional practice – not those engaged in therapy or social services. Thus, to the maximum extent possible, we aimed for organisations in which agency lies with people with disabilities, which, as Hadley and McDonald (2019, 6) note, can range from being artists to ‘director or producer roles, to acting roles with input into direction and production, to consultation and advisory committees’. It is also true that amongst the participating organisations are companies/organisations that include people with intellectual disability (“ID”), which are not necessarily governed by people with disabilities but which tend to have a significant focus on professional practice (n = 7).

In line with best practices in qualitative research, we adopted a flexible approach which evolves in response to context (Taylor, Bogdan, and DeVault 2015; Foley 2021). Such flexibility was particularly necessary in the present study, which involved participants using a range of different languages, as well as requiring reasonable accommodations (such as sign-language interpretation) to facilitate their participation. Furthermore, we started our empirical research during the Covid-19 pandemic, which ruled out face-to-face interviews. We carried out online interviews allowing for maintaining the face-to-face element of interviewing (Foley 2021). As an alternative, we provided qualitative questionnaires that sought open-ended or free-text answers and enabled participants to respond in writing in English or in a language of their choice, as a way to reasonably accommodate them. It has already been highlighted that such questionnaires can be combined in a complementary way with interviews, enabling extensive research over a large or geographically dispersed population (McGuirk and O’Neill 2016). While data gathered by written questionnaire can limit the depth and richness of responses, in our case they also allowed for open-ended responses that contributed to an in-depth study of individual cases (see Blaxter, Hughes, and Tight 2010). In our study, the quality of analysis from many questionnaires compares favourably with qualitative interviewing on the same topic (see Denz-Penhey and Murdoch 2009). Forty-eight people, representing 40 organisations, participated in interviews, while 25 questionnaires were returned by representatives of 23 organisations.

We typically recruited representatives of organisations in senior roles and our interview guide invited them to identify the key barriers to participation by people with disabilities in their countries as they perceived it. All participants received information on the study in advance, and gave written consent to participate. The study received approval from the relevant Maynooth University ethics committee and took place from May 2021 to March 2023. When we present extracts from participants’ interviews/questionnaires, we identify from which country they were drawn (using standard abbreviations for countries used in the EU) and the type of organisation involved (organisation of people with disabilities - DPO; organisation working on arts and disability - A&D; organisation of Deaf people - D).

Interviews were transcribed verbatim. Transcripts and questionnaires were analysed using a reflexive approach to thematic analysis involving: familiarisation; systematic coding; generating initial themes; developing and reviewing themes; refining, defining and naming themes; and writing up (Clarke and Braun 2013; Clarke and Braun 2017; Braun and Clarke 2021). We pursued an initial coding process that was open, unstructured and largely inductive, and themes were afterwards developed from codes. We ultimately organised initial themes on the subject of barriers according to the overall classification we had already identified from our literature review (Leahy and Ferri 2022a).

Results

All participants identified a series of barriers to cultural participation by people with disabilities in their countries. Those barriers were common or comparable across countries, even if some of the participants perceived that their countries were not as advanced as others. We identified five interlinked categories of barriers: (1) lack of effective/adequate laws and policies; (2) lack of adequate services or lack of funding; (3) negative attitudes; (4) lack of accessibility; (5) lack of consultation with, and involvement of, persons with disabilities in cultural organisations.

Lack of effective/adequate laws and policies

A key barrier perceived by participants from many countries relates to ineffective implementation or lack of laws, as well as inadequate approaches to public policies, with policymaking insufficiently involving people with disabilities.

Lack of effective laws

Some participants felt that existing national laws in their countries were insufficient or did not include sufficiently specific provisions to facilitate participation in arts and culture such as guaranteeing access to cultural content (that is, exhibitions or content of performances) to persons with disabilities. For example, for a Dutch participant (NL DPO), current laws and policies did not ensure that guided tours were provided that were accessible to Deaf people, to blind people or to people who need easy-to-read language. A Polish participant said that theatre was one of the least accessible aspects of culture, and, talking about recent legislation on accessibility, suggested that it was yet to become fully evident if/how it would be applied to cultural events (PL A&D).

For many participants, the greatest barriers were in the area of enforcement, even when national legislation was deemed reasonably comprehensive. As one participant put it:

Our legislation prohibits discrimination and defends accessibility to all aspects of life; however the legislation is not applied in its entirety and there is a lot of permissiveness with the breaches (PT DPO).

Similarly, a Slovenian participant characterised the ‘Equalisation of Opportunities for Persons with Disabilities Act’ as ‘rather far reaching and ambitious’ but added that: ‘there are often laws that are excellent on paper, but they are not necessarily implemented’ (SI DPO). For others too, laws existed only on ‘paper’ and there was little enforcement. A few participants highlighted that problems with enforcement were exacerbated because the burden fell to individual people with disabilities to bring a case to courts, which is costly and daunting.

Linked to these issues, participants often perceived ambiguity and considerable room for self-regulation by cultural bodies. For example, for an Estonian participant, cultural institutions and organisers did not know what legal requirements applied to them: ‘it is not exactly known about what must be guaranteed’ (EE A&D). Similarly, a Latvian participant (LV DPO1) suggested that as regards culture there ‘is no common understanding of the observance of legal norms.’

Turning to the issue of sign language, participants often perceived that access to cultural content for Deaf people continued to be patchy and difficult despite laws recognising or promoting sign-language. An organisation from Finland (FI D) suggested that, despite the Sign Language Act from 2015, arts and cultural organisations did not integrate sign language and were not even ‘very aware of it’, while also acknowledging that, especially in the area of visual art, there were now more signed guided tours. A Lithuanian participant (LT D) suggested that, whilst there were some good sign-language projects, access depended on ‘goodwill’ with only ‘recommendations and informal communication’ applied to cultural organisations. For an Austrian participant, despite sign language being recognized in the Federal Constitution as an independent language, deficits in practice related not only to insufficient availability of qualified sign language interpreters, but also to the fact that:

…there are no standardized regulations (no legal entitlement) for assuming the costs of sign language interpretation services in the federal provinces of Austria (AT DPO).

As is evident from findings discussed in this section, a lax approach to implementation of existing laws, even where they exist, contributes to barriers in access to cultural goods and services.

Policies operating as barriers

Participants often perceived that cultural policies did not include input by people with disabilities, and resulted in creating barriers to (instead of facilitating) access to culture. The views of a German participant that disability issues were ‘not part of the national cultural policy’ was consistent with perceptions of many participants. Consequences perceived by that participant included lack of funding and monitoring of existing legal provisions, and little guidance on what access should be provided even where arts projects received state funding (DE A&D). Similarly, an Estonian participant suggested that the country lacked ‘a structure, a framework from the national level’ and a concrete strategy to support greater accessibility even within publicly-funded organisations (EE DPO). Notable exceptions to the more typical perception of lack of influence on cultural policies came from a few participants, including from a UK DPO, whose representatives felt that the Arts Council had done well in England in ensuring accessibility for audiences. Overall, however, even these participants perceived that outside the area of culture government approaches were not informed by people with disabilities (UK DPO). Nonetheless, the UK represents an interesting case of how significant the commitment of key cultural policymakers/funders can be in moving things forward.

Other participants perceived that lack of input into general policies by people with disabilities, lack of expertise to ensure implementation of good policies, or overly medicalised approaches to policy did not support participation in many spheres of life, including culture. For example, general policies on education provided to people with disabilities could be perceived as not inculcating an interest in culture and as not challenging prejudicial attitudes on disability more generally. In that regard, a participant from Belgium (Flanders) felt that continuing segregation in education had consequences in terms of marginalisation of people with disabilities within all aspects of life, including in culture, and that segregated education did not cultivate artistic/cultural tastes (BE DPO). Similarly, participants from Greece and Croatia highlighted how the quality of the education received does not cultivate and promote involvement in culture ‘either in mainstream schools or special education schools’ (EL DPO). Indeed, several participants perceived that segregation of people with disabilities continued to hamper arts participation. Further, they highlighted how certain cultural events or festivals involving people with disabilities, sometimes at an amateur level, continued to be segregated. A Polish participant commented that:

We are still in this paradigm of segregation when it comes to performing… there are some festivals where people with disabilities perform but they are dedicated to those groups, so it is not really the mainstream culture (PL DPO).

Turning to professional engagement, participants in a broad range of countries identified explicit or implicit policies excluding people with disabilities or Deaf people from arts colleges or academies, preventing development as artists/performers. Explicit exclusion of people with disabilities from performing arts schools was reported by participants from Croatia and Greece, who suggested that a requirement to be non-disabled had operated until challenged by advocates in recent years. Other participants felt that exclusion happened in more indirect ways. For example, a Bulgarian participant mentioned that people who wanted to train as musicians, actors, or painters could not do so because of physical barriers and exclusion of guide dogs in university buildings, or because learning materials were largely inaccessible for people with visual impairments and Deaf people (BG A&D). Attitudes of the academics could also operate as barriers. As one Portuguese participant put it: ‘the idea teachers in those schools have of who can be an artist, what kind of bodies can be present on stage, is very limited or perhaps non-existent’ (PT A&D).

Social welfare policies also created barriers to work in creative industries, chief amongst them being risk of loss of disability payments. The details that this assumed took different forms in different countries, but, typically, artists with disabilities risked loss of ongoing disability payments if they received a grant, a residency or payment for work done – even though those emoluments tended to be once-off or intermittent. This limited professional development. For example, a participant from Sweden described the issue as follows: ‘The professionality is limited by the system, you can be an artist but perhaps you can’t get paid for your contribution in the normal way.’ Similarly, a Danish artist (DK A&D) discussed how he is unable to take up residencies or grants because it would represent a form of income, saying ‘when it comes to working life …I feel boxed in.’

Lack of adequate services and lack of funding

The second category of barriers identified refers to lack of adequate services and lack of funding. Thus, participants sometimes referred to poverty or financial barriers operating as structural obstacles for people with disabilities and, relatedly, to lack of adequate services or basic supports that would enable participation in culture (see also Ferri et al. 2022). They also pointed more broadly to lack of funding for cultural organisations to facilitate access.

Financial barriers and lack of adequate services for individuals

Participants often highlighted inadequate disability payments or supports that resulted in reduced opportunities in general and hampered cultural participation. A stark position relative to living conditions was outlined by participants from a range of countries in which lack of cultural participation was the consequence of poverty or deficient income supports. In this respect, the study confirms the existence of structural barriers faced by persons with disabilities, as well as the fact that they often face poverty (see Braithwaite and Mont 2009; Groce et al. 2011; WHO and The World Bank 2011; Pinilla-Roncancio 2015; see also 2^nd Author et al. 2022). For example, for a Cypriot participant, basic services (such as education and health) as well as income support were so deficient, especially for people with severe levels of impairment, that cultural participation was ‘a luxury’ (CY DPO). In a similar vein, a Latvian participant characterised disability payments as only sufficient for ‘basic needs’, leaving cultural and artistic activities ‘in the background’ (LV DPO 1). Likewise, a Bulgarian participant felt that there was much to do relative to the rights of people with disabilities (highlighting problems accessing healthcare, employment and education), adding that ‘even if we don’t like to state this, the participation of people with disabilities in our cultural life is a very last problem of our country’ (BG A&D).

Even where access to events or venues was free, there could be additional costs of participating for which support was perceived to be absent. For example, a Portuguese participant highlighted extra costs of participating in culture if you experience disability (such as needing to take a taxi due to not being able to access public transport) (PT A&D). Other participants highlighted lack of personal assistance. For example, a Cypriot participant discussed absence of income and lack of assistance to leave home, suggesting that if she wishes to attend any performance there is ‘no mechanism of including me or of supporting me to get out of the house - we have nothing’ (CY A&D). Furthermore, even if personal assistance was available, it was not always sufficient for cultural participation. For a Danish participant, austerity measures resulted in supports being unavailable that would facilitate leading ‘a full life’ (DK DPO). He suggested that limited availability of personal assistance meant that participating in cultural life: ‘is considered a luxury and not a basic need,’ highlighting how it was people with the highest levels of impairment and those with the least financial resources who were most negatively affected by these economic decisions.

Financial barriers for cultural organisations

As well as financial problems faced by individuals, participants sometimes highlighted that cultural organisations were not well supported financially to realise accessibility, and that obtaining the budget necessary to facilitate even occasional projects that were accessible could be challenging. As one participant suggested of people working in cultural institutions, ‘they don’t have funding, they don’t have people, they don’t know how to do the accessibility’ (RO A&D). In addition, organisations of Deaf people and others highlighted a paucity of funding for sign-language interpretation of events, which a Finnish participant characterised as ‘very scarce’ (FI D), and which could mean that, as one Irish participant put it, sign language is ‘barely used’ in cultural events (IE DPO)

Negative attitudes

Attitudinal barriers, or negative attitudes or ableism, were identified as key barriers by many participants. In this respect, the study confirms the existence of attitudinal barriers within cultural sectors (Ludwig 2012; Argyropoulos and Kanari 2015; Renel 2019) and the emphasis on prejudice and on withholding of social and cultural recognition from people with disabilities already highlighted in scholarship (see, amongst others, Watson 2003; Reeve 2012; Campbell 2013).

Negative attitudes were the ‘biggest obstacle’ to cultural participation (CZ A&D) for several participants, although some perceived that attitudes were not so much ‘negative’, as ‘ignorant’ or ‘charitable’. As a Portuguese participant put it, the first barrier to cultural participation is people’s ‘mentality…. what we think some people can or cannot do’ (PT A&D). Likewise, a Slovenian perceived that despite the existence of legislation, ‘the mentality of people is not there yet’ (SI DPO).

Several participants felt that their creative work was not well understood or supported because of assumptions that art made by people with disabilities had therapeutic or social aims, not artistic ones – or that it had taken years of effort to inculcate a different understanding. For example, a participant from a theatre company from Czechia outlined audience assumptions that the theatre’s performances would lack artistic merit, and related difficulties obtaining funding from arts/cultural budget-lines, as the funders imagined that social funding would be more appropriate (CZ A&D). Similarly, a German participant (DE A&D) felt that funders treat access as a ‘social initiative’ not an artistic one, depriving artists with disabilities of the right to the same kind of support as others.

Some participants characterised attitudes in the arts as not so much negative as ‘not open.’ This was the view of a participant from an Irish organisation, working in a theatre that included people with ID, who perceived that people pre-judged the capacities of performers with ID and consequently limited what they could do (IE A&D1). Similarly, a Finnish participant suggested that while people working in culture think that they are very open-minded, this is not always the case when ‘they are actually confronted with disability issues’ (FI PDO). This issue is linked to failure to consult with or to employ people with disabilities, something that we return to below.

However, there were also perceptions that attitudes in general had improved but only with regard to certain groups. For example, participants from Latvia and Germany (DE DPO; LV DPO2) felt that attitudes had improved towards wheelchair users, while a range of other people (including people with ID, psychosocial disabilities, autism or neurodiversity) were often thought to be more affected by negative attitudes. Moreover, a few participants felt that mainstream audiences had started to become more open to engage with culture featuring or produced by people with disabilities. One participant from the UK pointed to high profile performers and actors with ‘a greater penetration of mainstream work by disabled artists than we have ever seen before’ (UK DPO). Several participants attributed good practice to particular institutions or to individuals within certain institutions that have engaged and learned about disability. Overall, however, good examples, tended to be perceived as occasional or fragmentary in many countries.

Lack of accessibility

The fourth category identified in our analysis relates to lack of access. This category encompasses physical barriers for audiences and also for artists/creators/employees, and difficulty in accessing cultural content.

Difficulties in physical access for audiences and artists/creators/employees

Analysis of a series of State reports made by European countries to the CRPD Committee found that they emphasise physical accessibility in the cultural/heritage sphere (Leahy and Ferri 2022b). But participants in many countries felt that laws mandating accessibility of buildings were not enforced. This was especially, but not exclusively, the case in older buildings, those outside large urban areas and/or those privately owned. Participants often reported that many cultural buildings – even publicly owned ones - continue to be inaccessible, or to be only partly accessible for audiences and visitors, something also reported in other research (see Pretto 2022). For example, according to a participant from Bulgaria, most ‘museums, galleries, theatres are not accessible, are physically not accessible’ and ‘libraries are equally inaccessible’ (BG DPO), and an interviewee from Cyprus suggested that even though cultural buildings ‘should be accessible’ they are not (CY A&D). For a Polish participant, ‘architectural barriers are well preserved’ (PL DPO) and a Greek one considered that while gradual improvements have occurred for wheelchair users in accessing heritage sites and museums, theatres and cinemas often continue to be inaccessible (EL DPO). In several cases, even new or renovated buildings were experienced as inaccessible. For example, Latvian and Romanian participants (LV DPO1; RO DPO) highlighted that what should have been accessibility features were in fact unusable by persons with disabilities. As one said:

The focus is on the physical environment and sometimes the actions are not coherent - ramp, but you can enter the lobby, but not the performance room…. Usually, there are not accessible toilets (RO DPO).

Participants who highlighted ineffective features intended to provide for accessibility sometimes attributed this to lack of knowledge on the part of those engaged in building design. As a participant from Germany explained, accessibility often depends on the expertise of the architectural firm concerned (DE A&D).

Difficulties with physical access to buildings for people with other kinds of disabilities were also reported, such as lack of tactile flooring in the appropriate places. In the experience of a Lithuanian participant, for people who are blind or visually impaired, the aesthetic pursued in new buildings tended to be even more exclusionary than in traditional buildings (LT DPO). She referred to lack of tactile guides and signs on walls and doors that blink, have low contrast, or are otherwise hard to see.

These negative experiences can be contrasted with more positive statements relating to audience access from participants from a small number of countries, including the UK, Slovenia and Luxembourg. For example, the first felt that basic access for audiences in theatres, concert halls and galleries was ‘well addressed’ and that there was now ‘a greater commitment to changing-places, toilets and the provision of more specialist access’ (UK DPO).

Another issue commonly reported was that even if there was compliance with laws in cinemas, theatres or museums, the experience provided, even for people using wheelchairs, was not optimal, such as different and less attractive paths through a museum or, typically, separating wheelchair users from companions in a theatre or cinema and/or placing them in an undesirable position, often in the front row. For example, an Italian participant said that cultural organisations may comply with the legislation but ‘do not give the maximum satisfaction to the person’ (IT DPO). Addressing the issue of being separated from others, a Swedish participant (SE DPO) said: ‘You are only counted as a person with a disability and not as a member of a family or a couple or a mother or father. So it is very stereotyped’ (SE DPO).

A key issue raised was that for artists, performers or employees with disabilities, physical accessibility of venues and performance spaces was worse than for audiences. It was widely reported across countries that this continued to be a problem even in buildings/institutions that had been made accessible for audiences. As a UK participant put it, ‘there is a real barrier for access to backstage areas and organisation administration areas’ (UK DPO). Other examples came from companies of performers of difficulties finding accessible performance or rehearsal spaces within institutions that had implemented accessibility measures for audiences.

Difficulties accessing cultural content (such as exhibitions, libraries, performances)

Participants also addressed barriers constituted by inaccessible content of museums, theatres, cinemas, libraries and events, while highlighting improvements and some good examples in recent years. A UK participant spoke positively about improvements, stating that things are:

…definitely moving along, perhaps not moving along as fast as the more physical access, but in terms of Braille interpretations and the provision of much more specific access is being improved by and large across the arts (UK DPO).

Overall, however, good examples of accessible content were perceived to remain fragmentary or project-based and outside the mainstream. For example, a Greek participant (EL DPO) characterised positive access measures (such as accessible and digital access to exhibition content) as ‘fragmented,’ and a Portuguese participant (PT A&D) perceived that accessibility of content continued to be a problem across ‘all the programming that cultural organisations have to present’ (instancing museum exhibitions, performances and libraries) notwithstanding recent improvements. Some participants highlighted that opportunities for some groups (often including people with ID or psychosocial disabilities or neurodivergent people) were particularly limited.

Lack of knowledge and skills of staff of cultural organisations was especially highlighted in this context. Thus, making content accessible was perceived as presenting more challenges for staff than facilitating physical access. For instance, even though an Estonian participant felt that the cultural sector had shifted and that they now know ‘that accessibility is good’, he also considered that they lack the competence and expertise to be fully accessible (EE DPO). A Polish participant (PL A&D) highlighted how accessibility was not treated as a central issue throughout cultural organisations and, instead, responsibility is allocated as an add-on to other responsibilities of someone without specialist knowledge. Again, there were also examples of attempts to make content accessible that were not successful. For example, one participant (IE A&D2) instanced production of a large-print book to accompany an exhibition in which the ordering was out of synch with the order of the actual exhibits, making navigation impossible for visually impaired people. For Deaf people, lack of sign language interpretation was frequently highlighted and attention was drawn to the need for greater quality of interpretation.

A somewhat related barrier highlighted by some participants concerned information and communication. Several participants perceived that, while there might have been some improvements, accessible and adequate online information about cultural events/access was often unavailable, even on public websites. Obtaining relevant information from websites could require perseverance and research, which was off-putting for many people with disabilities.

Lack of consultation with, and involvement of, persons with disabilities in cultural organisations

Another important barrier relates to failure to consult people with disabilities in meaningful ways in decisions about cultural accessibility and to lack of employment of people with disabilities as artists, arts professionals or leaders.

Inadequate consultation

Explicit and implicit in the statements of many participants addressing lack of knowledge on the part of designers and staff of cultural venues of how to facilitate access is the sense that there was also a failure to adequately consult with people with disabilities or to try and understand the experience from their perspectives. This was perceived to occur at many stages, including during planning of buildings, in programming and in creating content. For example, a Danish participant (DK DPO) linked the incapacity to provide good experiences to people with disabilities to lack of understanding: ‘they don’t have the ideas or the ability to put themselves in the shoes of people with disabilities’ (DK DPO). As one Romanian participant put it, because people with disabilities ‘are not consulted and involved’, there are only ‘superficial measures’ effected by ‘professionals that do not really have expertise in the field’ (RO DPO). Despite ‘good intentions,’ projects are planned ‘from the perspective of the person without the disability’ without ‘any person with a disability as an organiser’ and, thus, without the knowledge to create something interesting or accessible for people with disabilities (PL A&D).

Moreover, the experience of some participants in consultative or inclusion processes was that they were inadequate. For example, a German participant talked about consultation happening almost as an afterthought, instancing a new museum consulting with her organisation ‘too late’ when programming was in place – so ‘access was added at the end’ (DE A&D). That participant flagged the need to move to a more mainstream approach to facilitating access for a wide range of people with disabilities – rather than focusing on specific impairments, and felt there was very little understanding of this within cultural organisations. In short, even where cultural organisations attempted to create greater accessibility, their efforts often fell short because of lack of knowledge underpinned by failure to adequately consult.

Lack of employment as artists, arts professionals and leaders

A related point concerned lack of employment of people with disabilities within cultural organisations - as artists, arts professionals and as managers, leaders and decision-makers - as well as exclusions or limitations in opportunities to create art. Consequences were perceived not only in terms of exclusion of people with disabilities from employment, but also lack of expertise around providing accessibility for audiences and also limitations on artistic and cultural expression more broadly, which is deprived of important perspectives and of challenges to stereotypical or medicalised ideas about disability. For several participants, people working in the arts tended not to think of people with disabilities as artists or performers. As one said, they ‘do not think to hire people with disabilities’ (SE DPO), with another experiencing ‘quite deep prejudices’ that make it ‘hard for a blind person to become a professional actor’ (SK A&D). A Greek participant felt that medicalised notions meant that people with disabilities were considered ‘only as visitors and/or consumers of cultural products/services’ (EL DPO). That participant added that working as a museum ‘curator, designer, educator…. looks like as an unreachable expectation’ (EL DPO).

Furthermore, such opportunities as did exist were limited in various ways. For example, a Finnish participant spoke of her experience as performer of being offered work at venues where, because of mobility issues, she would have to agree to be lifted and carried – something that she resisted but felt that it excluded her from opportunities to perform and to network that non-disabled peers enjoyed (FI DPO). That participant highlighted also that ‘people tend to look at your art through the disability whether you are yourself disability politically minded or not’. Thus, even when people with disabilities were employed as artists/performers, this tended to involve a focus on disability itself, and, as one participant suggested, not to involve people with disabilities as ‘ordinary people’ (DK DPO). An Irish participant posited that if people with disabilities were employed in all kinds of roles from front-of-house to programming, ‘that would change everything’ (IE A&D2).

A related issue was that art created by people with disabilities often continued to be segregated. As one participant said, ‘we are not shown that it is also culture and it is not as valued as the mainstream culture’ (PL DPO). Consistent with this, a Finnish participant (FI DPO) anticipated a time when it was understood that ‘art is not something special for special people who all have a beautiful and functioning bodies’ (FI DPO).

Finally, though participants in several countries perceived improvements, pointing especially to individual artists or companies that had achieved prominence, this was not generally perceived to extend to leadership roles or to roles in decision-making or funding in the broader cultural sector. This is consistent with a review carried out by the second author of national disability strategies across Europe which found that few measures address participation by people with disabilities in policy decision-making and in management within cultural life (Šubic and Ferri 2022). Consistent with this, a UK participant perceived that, while there was ‘greater integration of the disabled experience on stage and also on television and on film’ (UK DPO), a key barrier continued to relate to a lack of people with disabilities in leadership positions. Crucially, this participant felt that people with disabilities were not given ‘the reins of organisational power to change things…. whether that is broadcasting, film or the arts’ (UK DPO). This is, we suggest, a key issue that needs to be addressed systematically to embed cultural participation by people with disabilities within the cultural mainstream.

Conclusions

While environmental barriers to participation can differ considerably between countries and communities, our study confirms similar experiences of inaccessibility of cultural venues and content, as well as the persistence of underling structural barriers (see WHO and The World Bank 2011). Our empirical findings, which are based on a wide geographical spread (28 European countries), on broad personal scope encompassing all disability types, and a wide material scope, including all art-forms as well as cultural heritage, highlight that these barriers are commonly perceived by people with disabilities across Europe. Our study also highlights that improvements are perceived to have occurred in some countries, particularly as regards physical access and participation as audiences. However, it shows that, across all countries considered, persons with disabilities can experience access to cultural content afforded in an intermittent or fragmentary way. Our study also identified issues operating as barriers within cultural industries that are not as evident from the existing literature, including a range of barriers to cultural production by people with disabilities and to their employment and influence at all levels within cultural sectors.

Where laws are concerned, participants perceived legislative gaps, and, especially, lack of implementation of existing laws and also policies. Laws could be perceived as inadequate or, especially, as not monitored, implemented or even understood within the cultural sector or to rely on enforcement pursued by individuals. Alongside this, participants reported little influence by people with disabilities on cultural and other policymaking in their countries. The UK represents a notable exception as regards the funding policies pursued by the Arts Council, signalling potential for equivalent institutions in other countries to link funding to accessibility and to become drivers of change. Overall, however, lack of input into cultural policies and funding decisions subsists in many countries, notwithstanding requirements of Articles 4(3) and 33(3) CRPD for persons with disabilities and their representative organisations to participate fully in implementation and monitoring the CRPD, and more generally in the enactment of disability policies. Our findings also signal the need for greater understanding of barriers from the points of view of different groups of people with disabilities in the drawing up of standards and policies and in monitoring their implementation. Measurement should be user-focused and assess whether ‘significant and lasting improvements’ have been achieved (Weisen 2012, 13), something that would require adequate funding to facilitate input by people with disabilities and their representatives.

Furthermore, the study confirms how interlinked are policies pursued in a range of areas – from education to social protection – and how, in combination, they can operate as barriers to cultural participation (and other forms of participation). In particular, the exclusion of people with disabilities perceived across many countries from opportunities to develop skills as professionals must be addressed. This is likely to require both carrot and stick – in other words, building knowledge and skills within academies, providing incentives, and also introducing/enforcing legal measures. Similarly, social protection policies need to be reframed so that they support, not inhibit, development of professional approaches.

Inadequate income reported on the part of people with disabilities precluded cultural participation in many countries, something that would be shared with other socio-economically disadvantaged groups, underlining the need for greater cultural access at a broader societal level. More specific to the experience of disability was lack of personal assistance or sign-language interpretation, which, where available to individuals, often tended not to be used to facilitate cultural participation because they had to be applied to other areas of life. In parallel with this, issues related to funding make it difficult for cultural bodies to mainstream accessibility across their organisations and offerings, something compounded by lack of knowledge on the part of staff and funders. Furthermore, funding agencies were perceived to sometimes operate from medicalised or charitable notions about disability that limited access to funding by artists with disabilities and companies of artists with disabilities.

Participants reported that negative attitudes on the part of others continued to limit cultural participation, although they also sometimes perceived improvements in attitudes towards some types of disability, with people experiencing ID, psychosocial disabilities and neurodiversity being amongst those thought to continue to be most negatively viewed. The study also confirms that even artists and people working in cultural industries (who are often assumed to be broadminded) can fail to be ‘open’ regarding disability, and can focus on the disability itself rather than on the creative potential of everyone.

Inadequate consultation with people with disabilities, and lack of employment of them as artists, arts-professionals and as decision-makers was a clear barrier to cultural participation (both on the consumption and creation sides). This confirms what some studies have already claimed, and points to the need for greater consultation by cultural organisations (European Blind Union 2012; Ludwig 2012; Lid 2016). It also confirms how organisations specialising in accessibility and in working with people with disabilities may be important facilitators (British Council 2021).

Finally, fragmentation of access or of opportunities to participate afforded only intermittently was a significant and widely reported issue across countries. Such fragmentation is also linked to all the categories of barriers that we identified across our data – such as inadequate laws or enforcement of laws, lack of adequate funding, knowledge and consultation and, thus, it is relevant to all other findings. For example, good practice within the museum sector could be perceived to still be ‘pilot’ or ‘experimental’ (IT DPO), or participants might perceive that accessible festivals and performances had come and gone (PL DPO). The vivid metaphor of ‘fantastic islands’ was used by a participant from Estonia:

There are…. quite good examples of accessible museums, films, performances and major events, which are equipped with, for example, a descriptive translation…. It can be figuratively said that there are fantastic islands, but there are no bridges or boats/ships that will bring [you] to them (EE A&D).

As that participant added, ‘fragmentation does not favour…… enjoyment of this what is offered’ (EE A&D). It also means that learning and good practice can depend on an individual staff member and may be lost as projects end. This, as Weisen (2012) highlights, has been happening for decades, and is so despite publication of many good practice guides and checklists in different countries (see British Council 2021, 81-87). This points to a fundamental challenge for policymakers at national and EU levels - to build on the learning and good practices developed within individual projects/institutions, and to move to more systematic approaches that embed knowledge and good practice in the mainstream.

Acknowledgements

This research article has been written within the remit of the project ‘Protecting the Right to Culture of Persons with Disabilities and Enhancing Cultural Diversity through European Union Law: Exploring New Paths – DANCING’. This project has received funding from the European Research Council (ERC) under the European Union’s Horizon 2020 research and innovation programme (Grant Agreement No 864182). This article reflects only the authors’ views and does not necessarily reflect those of the European Union or the ERC. We also acknowledge, with sincere thanks, the contributions of the participants in our study.

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No potential conflict of interest was reported by the authors.

Correction Statement

This article has been republished with minor changes. These changes do not impact the academic content of the article.

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Funding

This work was supported by European Research Council.