Music as a Tool for Disability Activism

By Diane Kolin


The relationship between disability and music/the arts has been documented in various disability activism movements of the twentieth and twenty-first centuries. In the domain of Critical Disability Studies (CDS), scholars have explored the different stages of disability activism in our society. In this article, I explain how CDS has changed the vision of disability thanks to artistic initiatives, and how different models of disability differ in relation to arts and culture. I give an overview of disability activism in the arts more generally and in music in particular. Events that have impacted disability inclusion in the professional music world are given as examples. I enhance my study with narratives of disabled musicians I have interviewed.

The academic study of the relationship between disability and music in the arts began only recently.The first article in the field of Critical Disability Studies (CDS) about music was published by Joseph N. Straus: “Normalizing the Abnormal: Disability in Music and Music Theory” (2006), Journal of the American Musicological Society 59 (1). It started to appear in texts by Critical Disability Studies (CDS) specialists, not the fields of art and music. In the CDS field, several models of disability are explored, including the “social model,” where disability activism can be found.Seven models of disability are considered in CDS: the biomedical or medical model; the social model; the psychoanalytic model; the charity model; the human rights model; the intersectional model; the cultural & minority models. All have their supporters and detractors. The two most famous models, opposing each other, are the medical and the social models. For more about these models, see Vehmas & Watson (2014).,The social model of disability emerged from a Disability Rights Activism movement in the United-Kingdoms in 1972 called the Union for Physically Impaired against Segregation (UPIAS), founded in 1972. This movement redefined disability by dividing disability and impairment. For more about the social model, see Barnes (2012, 12-29). The social model of disability provided a framework for disabled people to challenge preconceived notions of disability established by the “medical model” and assert their rights.Many labels are used in the disability terminology to define a person with a disability. I will mostly use “disabled people” in this article, commonly used today, but will also mention Person-First Language, putting the person before the disability. For more about Person-First and Identity Language, see Dunn and Andrews (2015, 255–264). As opposed to the “medical model,” which analyzes disability from a strictly medical and functional point of view (e.g., spinal cord injury leading to the use of a wheelchair), the social model of disability states that people are disabled more by society and the obstacles it imposes than by bodily impairments. The social model also examines the entire person with her capacities, feelings, emotions, possibilities and social interactions with others. These two models, medical and social, have led to the distinction between the terms “impairment” (which refers to bodily condition) and “disability” (which refers to social obstacles). Mike Oliver and Colin Barnes, both pioneers in the field of disability studies, have written on the subject. Historically, Oliver points out:

The idea behind the social model of disability stemmed from the Fundamental Principles of Disability document first published in the mid-1970s (UPIAS 1976), which argued that we were not disabled by our impairments but by the disabling barriers we faced in society.About UPIAS, see note 3.,Mike Oliver “The social model of disability: Thirty years on.” Disability & Society 28 (7), 2013: 1024.

In complement, Barnes reminds us:

In order to understand the significance of the implications of social model reasoning it is important to remember that until very recently ‘disability’ was viewed almost exclusively as an individual medical problem or a ‘personal tragedy’ in Western culture.Colin Barnes, “Understanding the Social Model of Disability: Past, Present & Future,” in N. Watson, A. Roulstone and C. Thomas (Eds.), The Routledge Handbook of Disability Studies (Abingdon & New York: Routledge, 2012), 14.

Barnes considers the philosophical and cultural ramifications of individualistic negative responses to disability in Western culture. Going back to the place of disabled people in society during the Industrial Revolution, he analyses the economic and social changes brought by industrial capitalism, institutionalization, industrialization, urbanization, medicalization, eugenics, and other areas contributing to related fears and prejudices. Their comprehensive vision of disability as defined by the social model led to a completely new view of the rights of disabled people within our society. With disability activism, disabled people were not only able to claim their rights: they protested and petitioned, and they faced politicians, asking for a fair position in their communities. Activism has allowed disabled people to participate in the creation of new laws to make transportation and jobs more accessible to all kinds of people. 

However, Barnes points out that the social model is controversial, as its tendency to distinguish “impairment” from “disability” leads to a redefinition of the terms that seems outdated today.Barnes, 24. Along with the social model, another derived model appeared in the early 1980s: the “cultural model,” based on the idea that disabled people are seen as an oppressed minority group with a particular culture. Several movements were born from this concept, including Deaf culture (with Capital D), and Crip Culture, celebrating diversity. Deaf culture claims the use of sign language, and rejects the term “disability” in association to Deafness in the d/Deaf community.d/Deaf is used as a collective noun to refer to both those “Deaf” people who identify with the Deaf culture and those “deaf” people who do not. This definition can be found on the Canadian Association of the Deaf, Accessed March 27, 2021. The Deaf community (with capital D) rejects the idea of striving for a cure to treat deafness: the medical model cannot “fix” deafness. The Deaf community defends the fact that Deafness is a culture and thus does not necessarily need to access non-Deaf culture, they can create and access their own art. Paddy Ladd, a Deaf culture specialist, gives the following definition of the community:

From the standpoint of Deaf culture, deafness is not a disability; rather, to be Deaf is to belong to a cultural-linguistic minority, a ‘visual variety of the human race.’Paddy Ladd, Understanding Deaf Culture: in Search of Deafhood (England: Clevedon Multilingual Matters, 2003).

In Crip Culture, the term “Crip” stands for “Cripple,” a now-outdated and offensive term for a disabled person. The term has been reclaimed by the disability rights movement to represent disability pride, borrowing the concept from civil rights movements.For more about civil rights movements and disability rights movements, see Zames Fleischer and Zames. (2005). In his essay “Investigating a Culture of Disability, Final Report”, Steven Brown, a CDS specialist, was interrogating the existence of a disability culture model and invited many specialists and scholars to give feedback on the topic, by interviewing them or by attending conventions on the subject.Stephen Brown, “Investigating a Culture of Disability, Final Report,” Las Cruces, New Mexico (1994). Many participants showed the different aspects of the cultural model of disability, from a historical point of view to what can be associated with this model today, exploring definitions of disability culture. As an example, Carol Gil defines disability culture as follows:

A disability culture movement can foster disability pride. It promotes pride in us; it allows us to project a positive image to the public.  We renew each other and our strength through shared experiences and rituals.  If we express our culture in some unified way, we’re signalling; we’re communicating what our values, goals, and identity are. Through our culture we can recruit people.  When we present a strong image, it motivates people to want to belong. They want to be part of something that powerful.See quote in Stephen Brown, “Investigating a Culture of Disability, Final Report,” Las Cruces, New Mexico (1994), 105.

“504 Sit-in” – Picture taken by Anthony Tusler, shared with permission

“Belonging” is an important subject that goes back to the origins of disability rights movements: fighting for people to be included as individuals with identities and rights in the society. Person-first language was widely adopted, “disabled people” were referred to as “people with disabilities.” Many disabled people took part in activism movements to fight for their rights, such as the long “504 Sit-in” of April 1977, protesting Section 504 of the Rehabilitation Act of 1973, an American legislation that guaranteed certain rights to people with disabilities but had many flaws. In 1992, Section 504 became the American Disability Act, or ADA, recognizing the status of people with disabilities as a minority group.

Speaking of these movements, Brown reminds us of the importance of artists, especially musicians, to accompany these actions:

Music has played an extremely significant role in American popular culture for decades as well as in social movements for as long as they have existed. Music also reflects the oral tradition of storytelling and of passing from one generation to the next information that might otherwise be lost.Brown, 148.

Today, disabled musicians such as Lachi, who is discussed later in this paper, use music as a tool for disability activism, inviting other disabled artists to join her to show disability pride and to fight for disabled musicians to get a place on stage.

Today, disabled musicians … use music as a tool for disability activism.

Significantly, the inclusion of disabled people into traditional art forms has been initiated by disabled people. In 1995, a group of artists with disabilities assembled at the first North American conference on disability and the arts, called “This/Ability,” organized by the University of Michigan.‘This/Ability’, University of Michigan, May 8, 1995. Accessed June 29, 2021. David Mitchell and Sharon Snyder filmed the event and produced the documentary Vital Signs: Crip Culture Talks Back.David Mitchell, and Sharon Snyder. Vital Signs: Crip Culture Talks Back. Video documentary. Brace Yourselves Productions, 1995.  The arts are featured as a form of activism, and these artists raise questions relating to access and representation. In the film, the actor Kenny Fries declares:

I think that what first has to be talked about is that you would never see a white person play an African American on screen. But if somebody brings [up] the situation of why a disabled actor isn’t used, they’d say “Why should they?” So much of this conversation goes back to access. So that’s probably the first thing that the disability culture is based on and needs to look at: access. No matter what, access to money, access to power, access to whatever it is. You can’t play yourself in your roles.Mitchell, and Snyder. Vital Signs: Crip Culture Talks Back, video: 12:12. Accessed March 25, 2021. 

Each time a director casts a non-disabled actor to play the role of a disabled character, the topical issue of ableism is discussed. As an artist, a disabled person has to change society’s preconceptions about artistic practices and to propose alternative forms of inclusion. There are TV series made by disabled people with disabled actors, such as Vestiaires in France, or more recently CripTales in the United Kingdom and Deaf U in the United States.Vestiaires, French TV series, very popular, started its 10th season in 2021. Featuring actors with a variety of disabilities. Imagined by Adda Abdelli and Fabrice Chanut, disabled actors. Accessed March 25, 2021.,CripTale, Brittish TV series (2020). Written, directed and performed by disabled people and curated by disabled musician and actor Mat Fraser. Accessed March 25, 2021.,Deaf U, American TV series (2020). Featuring deaf actors, produced by deaf activist, model, and actor Nyle DiMarco. Accessed March 25, 2021. Theatre has followed a similar path. Being rejected from conventional theatre companies, disabled actors had to create their own set of tools and their own companies to show their abilities. England was among the first to finance such companies. One example is the Graeae company,Graeae theatre company. Accessed June 12, 2021. a pioneer in disability theatre for more than four decades (it was founded in 1980), where Deaf and disabled artists occupy the stage in a range of new and existing plays. Their aim is to “develop a new theatrical language in outdoor performance, invest in and nurture Deaf and disabled artists, and forge new collaborations and exchanges of skills with other companies.”About Graeae. Accessed June 12, 2021. In Canada, the actor James Sanders founded his company Realwheels after an accident that left him quadriplegic. Forced to stop his theatre school because of the lack of accessibility, he attended Simon Fraser University in Vancouver to complete his studies and open Realwheels in 2003. The company features community artists who create shows mixing music and spoken words to narrate stories related to disability experience. After Sanders’ departure in 2014 to focus on other projects, Realwheels has continued to promote accessible theatre. Their mission is to “create and produce performances that deepen understanding of the disability experience” and to “tell stories in which disability itself is not the focus of the conflict, but rather forms the landscape on which universal issues are debated onstage.”Realwheels. Accessed June 12, 2021. In the United States, Sins Invalid, a prominent disability justice-based performance project, is not only a company of disabled dancers and actors—they also offer political and social justice education around disability, race, gender, and sexuality. The group “incubates and celebrates artists with disabilities, centralizing artists of color and LGBTQ/gender-variant artists as communities who have been historically marginalized.”Sins Invalid. Accessed June 12, 2021. In addition to their shows, their website hosts multiple resources of interest, such as a podcast, documentaries, and a blog about disability justice.

As an artist, a disabled person has to change society’s preconceptions about artistic practices and to propose alternative forms of inclusion.

The presence of disability in professional music has progressed more silently. Musicians with a disability, even a non-apparent one, have to find different approaches, from music learning to their engagements in professional orchestras. The same way professional actors had to show their skills by creating companies within the disabled community, musicians gathered together to form their own orchestras and ensembles. England has been among the first countries to consider the issue of disability inclusion in the arts and continue to endeavor in this domain.The Disability Arts movement, founded in 1977 in the UK, was among the earliest artistic movements in the world to receive funding from national organizations such as the Edward Lear Foundation and Arts Council England. Since then, multiple projects have been funded and artists supported. Arts Council England actively promotes and encourages all kinds of initiatives related to disability and the arts. Although written four years ago, the 2017 report published by the Arts Council of England, entitled “Making a shift report – Understanding Trends, Barriers and Opportunities,”Arts Council of England, Making a shift Report. Accessed June 12, 2021. shows the slow progression of the inclusion of disabled artists in the arts despite the increase of artistic initiatives and structures in the country. These statistics showed that 3.2% of the artistic staff and 5.2% of the managers declared being disabled. It is even lower if we look only at music, with 0.6% for the artistic staff and 2.7% for management. The numbers have likely grown slightly since then, given the constant efforts of the Arts Council of England regarding disability inclusion in the arts. 

In order to put this trend into perspective, it is worth noting that around the same time as these rising numbers, England had hosted a worldwide event that pushed them to transform their model of disability inclusion: the 2012 London Paralympic Games. During the event, disabled athletes and artists agreed that it was the first time in the history of disability that they felt they were treated “like everyone,” meaning like non-disabled athletes and musicians. It was a good example of disability visibility and awareness. The opening and closing ceremonies, during which many disabled artists were invited to perform, were as grandiose as those of the Olympic Games a few weeks earlier. TV channels streamed the full competition both nationally and internationally. Crowds filled the stadiums as much as the Olympic Games. The athletes and artists were recognized and feted.“The 2012 London Paralympics was the biggest ever, the most accessible and best attended in its 64-year history. In the UK, the Games received media publicity and reportage on an unprecedented scale, regularly dominating both front and back pages of newspapers, and the UK Paralympic broadcaster – Channel 4 – cleared its prime-time schedules during the event to devote over 500 hours of live coverage.” (Jackson et al., 2015). However, after the games, this drastic change didn’t last. In 2015, Daniel Jackson, Caroline E.M. Hodges, Mike Molesworth and Richard Scullion, a group of media and communication scholars, published a book about the socio-economic impacts of the Paralympic games, inviting sports and disability experts to collaborate:

There remains work to be done in terms of the status of disability sport, but such progress may further distance events like the Paralympics from the broader issues of media representation of disability. For example, there is a continued desire for greater visibility of ‘ordinary and everyday’ representations of disability, and to give disabled people more of their own voice. This manifests in the criticism that outside of coverage of disabled sport, the media continue to represent disability in ways that are crude, simplistic and often very stereotyped and that therefore fail to in any way address established prejudices.Mike Molesworth, Daniel Jackson and Richard Scullion, “Where Agendas Collide. Online Talk and the Paralympics,” in Jackson et al., Reframing Disability? Media, (Dis)Empowerment, and Voice in the 2012 Paralympics (New York: Routledge, 2015).

While it is unclear as yet if social change has happened in a sustainable way, culturally, there has been an undeniable positive result for many disabled musicians who performed during the opening and closing ceremonies. After the event, and still today, the Arts Council of England has continued to support opportunities for disabled musicians to create or contribute to larger events, ensembles and orchestras. More recently, the BSO Resound, an ensemble composed of six professional disabled musicians and part of the Bournemouth Symphony Orchestra, became an illustration of this support.BSO Resound. Accessed June 12, 2021. Their conductor, James Rose, has cerebral palsy and has limited mobility and speech. He had to fight preconceived ideas about the impossibility of conducting without arm and hand movements. To conduct his orchestra, he has adapted by attaching a baton to his glasses, as he has more control of his head movements. As with any other conductor, the musicians had to learn the codes and movements James provided to lead them. The Arts Council of England and the Bournemouth Symphony Orchestra partnered to allow James Rose to obtain the required training and funding to create this ensemble. BSO Resound has been under the spotlights as the first disabled-led ensemble to perform at the BBC Proms in 2018. 

Disability awareness is key to the visibility of disabled artists within the music industry. Yet, the inclusion of disability, whether as an audience member or as an artist, has been slow. Discussions and initiatives have been present for quite a long time, as we have seen at the beginning of this paper with UPIAS (1976) and the disability rights movements (1977). 

However, being recognized by a wider audience has always been difficult. I have interviewed the British singer and guitarist Blaine Harrison who has taken part in actions led by organizations such as Attitude is Everything, which “improves Deaf and disabled people’s access to live music by working in partnership with audiences, artists and the music industry” for more than twenty years.Attitude is Everything. Website: Accessed May 9, 2021.  Blaine was invited to perform in an event with his band. His experience was incredibly positive: 

We came along to the gig and when we loaded in, it was completely unlike any other performance we’ve ever done. There was hearing loops for the hard of hearing. There was someone doing sign language, so we gave them all our lyrics in advance, and they had live signing by the side of the stage. They had a completely accessible dance floor. They had an accessible bar. There was a lift to go up and down into the venue. The atmosphere was just incredible, people in their wheelchairs smashing into each other, there was just this electric, alive environment. This was a wake-up moment. I thought: “This is what all gigs should be like.”Blaine Harrison, interview conducted by the author on October 30, 2020.

However, this type of event organized for and by disabled also raises other issues: does an event need to be open to disabled only to be fully accessible? Why are venues of our time not making efforts to provide the minimum of accessibility and inclusion required to welcome any audience or performers, disabled or not? Blaine continued:

Why is it that in the disabled community, we have to organize our own events in order to feel included, in order to feel validated as concert goers? We need to create our own spaces which are just full of other disabled people. Obviously, it’s a wonderful feeling to be part of the community, but let’s be honest: what everyone wants is for the world around them to feel less disabling. And I think that’s something that’s really changed in my lifetime. When I was younger, there was very much the sense that disabled people were to be pitied. There was a stigma around being disabled. (…) And I think we’re coming to an age now where society’s understanding of disability, and also for people with the disabilities, understanding of ourselves and our place within the disabled community and within society at large, has completely changed. Being in the music industry is a really interesting place to observe that change from, because everyone loves music. (…) Of all the art forms, I would argue that it should be accessible to absolutely everybody. It shouldn’t matter how mobile you are in your body, you should be able to access music regardless of whatever your situation is. Ibid.

Through their careers, some musicians have realized that, in order to be considered a member of the professional music community, action needs to be taken—change cannot happen unless it is triggered. Lachi, a US singer with a visual impairment, told me about the issues she faced regarding the accessibility of the places where she was invited to perform:

When I first got signed, I played with a band in which everyone was visually impaired or blind. When we would go to concert venues to do our shows, there was no accommodation whatsoever. A lot of stages don’t really have the safest way to get on a stage. There is no ramp for people with wheelchairs, some of them don’t even have stairs, so people have to take a big step up to get on to the stage. They tell you: “Just get up, you’re fine.” But for someone who’s blind, that’s almost like a task that is life or death in a sense. Lighting is always an issue when we do night clubs which are often dark. I personally have night blindness, so being able to see in a dark club is very tough, and then it’s also difficult to find whoever you’re supposed to be dealing with, so a lot of the times I will travel with some sort of road person, or my agent, in order to make sure everything is fine.Lachi, interview conducted by the author on October 23, 2020.

The artist is often invited to perform in venues that do not consider access and accessibility as part of the norms of the place. Moreover, the way venues consider access might be to purchase a ramp for wheelchairs, but not necessarily to increase lighting or have light markers for visually impaired people to navigate freely in the place. In order to work towards more independence, Lachi decided to pay more attention to accessibility issues and to the representation of disability in the professional musical world, getting involved in disability advocacy through an organization called Women in Music, a large association helping to support women artists in the music and entertainment industry.Women in Music. Website: Accessed May 9, 2021. During our conversation, she told me that, thanks to her acquired knowledge within Women in Music, she got involved with the Grammy Awards after attending an online panel about inclusion:

One day they had a Diversity Inclusion panel online, which I was so excited about because they never did that before. But at their panel, they discussed race, sexual orientation, religion, but they did not discuss disability. I was just an attendee, and I was adding comments, asking why they weren’t discussing disability, and none of the panelists said anything. I started to get upset by the lack of reaction. I started listing facts such as: “61 million Americans identify as a person with a disability, yet only 2% are represented in Hollywood, and even less than that are played authentically.” I was going on and on, copying and pasting. Finally, someone said: “I see someone in the chat saying some things about disability, and yes, we don’t talk enough about disability.” It was a very short thing. After it was over, I felt embarrassed because I went too hard. But then they ended up calling me and they said: “We were very pushed and touched by all of the stats you gave. We would like for you to moderate a panel for disability awareness.” I put it together, I moderated it, it was very well attended. And it was very good. So, from that point forward, I’ve hooked up with the Grammys to talk about disability awareness and host discussions and panels and started bringing in some initiatives.Lachi, interview conducted by the author on October 23, 2020.

Lachi’s actions demonstrate that the battle for being recognized as a professional musician—not as a disabled professional musician—can be part of a wider conversation within the music industry. By talking about the issues, we might see changes in the accessibility of these workplaces like we see in other domains. We might include the needs the performers have in terms of adaptations (for example, through the use of new technologies or connectivity to adapted instruments), mobility and access (for example adapted lighting, ramps to access the stage, accessible washrooms), as part of a regular contract for a concert. 

After their conversation with Lachi, the Grammy Awards proposed that she co-host panels about accessibility. I attended one of them in April 2021, organized by the New York Chapter of the Grammys, entitled “New York Chapter: Music, Purpose + Community.” New York Chapter: Music, Purpose + Community. YouTube video: Accessed July 3, 2021. She invited the two-time Oscar nominated singer and songwriter Siedah Garrett, the violinist and songwriter Gaelynn Lea, the singer and slide guitarist Ryan “Gooch” Nelson, and the hip-hopper Namel “TapWaterz” Norris—all disabled musicians—to propose improvements for the inclusion of disabled artists in the music industry, starting with the observation that disability is not thought of as diversity, particularly in big musical organizations. The artists pointed out that the word itself, “disability,” seemed to be taboo in the industry. There are not enough successful disabled musicians to act as role models for young musicians who wish to become professionals.

As Blaine Harrison pointed out, and as confirmed by Lachi and her guests during this panel, in order to get some representation of disability onstage, it often comes to the efforts of the disabled community to do something about disability representation, by creating special events fully open to all kinds of disabilities, or by claiming the desire to become a role model as a recognized disabled artist. However, venues, and the music industry more broadly, do not seem to carry out the efforts of making themselves more accessible, thus more diverse and inclusive. Disabled artists rarely appear in media, and they are hardly highlighted on social platforms. Visibility and acknowledgment of these artists should be more frequent in order to make disability and inclusion part of the reality of the industry. Interestingly, during the panel, there was a conversation related to CDS, comparing disability in the contexts of social and medical models. Illustrating Gaelynn Lea’s explanation of the social model, Lachi declared: 

I actually like the word disability, I know that people are afraid or don’t really like the word “dis”, D-I-S, the prefix “dis”, but I am distinguished, I’m distinct. Those start with D-I-S, and I have a disability. And I don’t do things despite my disability, I do things because of my disability. And I encourage anyone with a disability watching this, that it’s who you are. We need to start looking at things in the social model, as opposed to the medical model, which means that it’s not about an impairment. (…) If I have a wheelchair and you give me a staircase, I can’t get up the staircase, but if you give me an elevator, I can. And all of a sudden, I’m no longer “dis-abled” because I’m able to get to the second floor.Ibid., 00:36:24.

On one hand, the representation of disability in the music industry aligns with the same idea: if more and more disabled artists are shown on screen, featured, heard, and can prove that they are artists, not disabled artists, then they will be seen as such. The disability will disappear and only the musical skills will be remembered. This is a team effort that can only work if organizations and venues are willing to collaborate with disabled artists: with upstream adaptations, conversations, clarifications, and communication with musical organizations to make sure disability will not be an issue, then only the music making remains. On the other hand, the cultural model of disability promotes disability pride as part of an oppressed minority group with a particular culture: Crip Culture celebrates diversity, Deaf culture defines Deafness as a linguistic-cultural minority. Here too, there is a need for collaboration. As an example from Deaf culture, Dip hop, which is a form of hip hop in which the artist rhythmically signs a song and conveys lyrics in two languages simultaneously, brings Deaf or hard of hearing people and hearing musicians closer.For more about Dip hop, see Maler and Komaniecki (2021). In both cases, music is used as a tool for disability activism, whether it is to be more visible on stage or more included in performance practices.

About the Author:

Diane Kolin is a PhD student in Musicology in York University, Toronto, Canada. Her research interests are diverse and include Critical Disability Studies, Ludwig van Beethoven, and Franz Liszt. She is the editor in chief of the Journal of the French Beethoven Society – Association Beethoven France et Francophonie. The study of Beethoven’s deafness and her personal history led to her research in disability and music. She specialized in disability awareness and inclusion in the artistic world, particularly in music. Her collaboration with disabled musicians in the professional musical world allows her to expose new ideas on making music more accessible to a broader audience.


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