Disability, the curated drama?
How can curators challenge systems of domination to enable a more democratic and or equitable approach to curating?
Jimmy Squarefoot. Landau Forte Theatre Company, 1995.
Prologue
Well, for reasons explored in this essay, curators should proceed with great caution and care. It is not a race to invent terminology and slogans that best represent marginalised groups, but an awareness of the potency of language to boost or damage a campaign designed to bring democracy and equity to those with disabilities.
The ongoing conversation about how museums include and exclude different social groups has an effect on what objects it chooses to collect, how it interprets those objects, how it frames those interpretations and how it reaches out to marginalised communities. If curators wish to achieve democracy and equity within the institution, they must first acknowledge they are not starting from a clean slate. Museums are not neutral, and we are not all the same. When museums claim an objective and apolitical stance, they conform to the social forces of elitism, ableism, sexism and white supremacy that foreground its existence.
Cultural institutions have the potential to effect positive change in pursuit of a more equal and just society but cannot do so if they remain impartial. Striving for democracy means advocating for the inclusion of marginalised groups and not stopping at the point of accessibility. Meeting the logistical demands of accessibility and diversity may acknowledge but does not necessarily embrace difference. Providing reasonable accommodation in respect to disability within the museum or theatre only gets us so far. As Mia Mingus said, “just because disabled people are in the room doesn’t mean there is no ableism.”
Ableism is not an isolated issue, it sits within a broader system of domination that excludes, oppresses and renders invisible people of colour, people from low socio-economic backgrounds, women, as well as people with disabilities. To achieve inclusivity curators must go beyond improving access and dismantle the broader institutional and attitudinal barriers from within the museum programme, design and architecture. Curators have a responsibility to sustain and take charge of the DNA of a community, not just administer over the remnants of the dead world - that is a mausoleum. The stories curators choose to tell in the museum, or theatre, and how they frame those stories, will be critical in shifting the paradigm from one where accessibility is an institutional policy, to a place where inclusivity, equal opportunity, advocacy and accountability are institutional norms. The art institution can enable a more equitable approach to curating through ambitious, experimental and collaborative projects that seek to challenge inequality head on. Advocating for the disabled voice means ensuring inclusion from the inception of the project and maintaining clear, unambiguous language to educate, discuss and debate.
On with the show.
Scene One: The Protagonists and Antagonists
Who are ‘The Disabled’? Where are the disabled? Who is disabling who? How do you spot a disabled person? Why use the term disabled? This term focuses on the Able or not being able. The origin of this word offers us an insight to historical attitudes towards disability. Its etymology implies ‘deprivation or loss of power... incapacity in the eyes of the law.’ The inherently negative prefix ‘dis’ meaning “lack of”, “apart, away” implies a lesser human. Even terminology used without intent to do damage to progress can be offensive. We must stay alert to language because it has a direct influence on how we construct expectations of ourselves and those around us.
During the last half a century, there have been campaigns to change vocabulary when talking about those with a disability, markedly the adoption of ‘disabled’ over ‘handicapped’ which is now considered derogatory. Society realised if they wanted to preserve the dignity of the person with disabilities, they should not refer to them as someone who goes ‘cap-in-hand’ as a beggar. There is a recent preference for the term ‘people with disabilities’ over ‘disabled people’ which refocuses attention from the disability to the person for whom disability is only a secondary feature of their identity. It marks a shift in understanding that a disability is something people have, rather than who they are. Facets of the disability community prefer to be recognised this way, others choose to be referred to as ‘differently-abled’. Disability activist Mia Mingus has claimed the term ‘disabled’ because she gets “marked and oppressed as such” and so believes "it is important to name it”.
When working for disability justice the motivation should be to bring people onboard, not accuse them of using the incorrect term when they are expressing a genuine interest in issues of disability. Not that this actually happens very much. Most activists fighting for disability justice understand if you want to engage the general public in issues of disability, there is a time and place for the particularities of language. Perhaps the moment of interaction with an ‘able’ person who is waking up to the barriers faced by disabled people is too rare and precious to be lost on technicalities. A combative approach will only result in more conflict or resentment. Mia has said the term ‘disabled’ feels more accessible and transferable when talking to people for whom this is their first time discussing disability... “I want to engage them around disability and sitting on my high horse is not the way to do that.”
The fear of ‘cancel-culture’ may well be more of a reality than the activist chastising the ‘uneducated’ member of the public. There is a difference between using a term that is widely understood as offensive, like ‘retarded’ or ‘cripple’, and slipping up on the syntax when referring to someone with a disability. There is a difference between the person who uses a term with malicious intent, and the person who makes a genuine mistake when trying to get it right. It is more often somewhere between naivety and ignorance, than ignorance and animosity. Less attention could be paid to the people and platforms which perpetuate anxiety around political correctness, and more to those who are actually offering us the tools to advocate for marginalised groups.
Language to identify disability is clearly something we are still grappling with, which is not necessarily a bad thing. All our lives are threaded into a tapestry of interaction and communications that links with society and its institutions. Creating more language to help better define who we are outside the dominant narrative can be empowering. So long as we refrain from getting distracted from the purpose of disability justice, and accept that language only gets us so far.
What is needed now is some hard facts. The statistics in Appendix A highlight the growing financial strain on disabled people living in a welfare system which does not offer them financial security. This evidence suggests things are getting worse for people with disabilities and at the same time there have been national efforts toward equality. ‘Not All Disabilities Are Visible’ is one example of an effective campaign installing disability signage across the UK and suggests disability rights have increased in public consciousness. Meanwhile an increasing number of disabled people feel there is significant prejudice around disability, compared with a decreasing number of non-disabled people who feel the same. We find ourselves in a paradox. What appears as evidence of a more tolerant and learned society, such as disability signage, potentially emerges as response to an increase in discrimination. However effective an update in language may be in satisfying the contemporary ear, it does not in of itself challenge ideology. New terminology and slogans will not alone shift the axis of power to enable people with disabilities.
Scene Two: The Discourse
Ableism, discrimination in favour of able-bodied people, extends beyond language to the workplace, medical care, education systems and the built environment. The recent “social model” of disability identifies the environment, including inaccessible buildings and services, as one of the three main barriers in society for people with disabilities. The Equality Act 20106 states that all organisations are required to ensure their premises and services are accessible to those with a disability. The ‘Not All Disabilities Are Visible’ signs came as a response to disabled people being refused access to or being confronted when using a facility classified as accessible. Those responsible for a public place recognised the need for some people to be reminded about the nature of disability, fairness and tolerance. An increase in signage should be positive, but consider the installation of a wheelchair sign in a place where the accessible route is obvious, for example, next to a ramp. What is its purpose? Who is it for? (It’s strikes me that the universal symbol for disability is still someone using a wheelchair when there is a significantly smaller proportion of those who have a disability with visible characteristics, never mind require mobility aid, than those with a disability but show no ‘signs'.) People with disabilities may well find a sign suggesting what is already evident patronising. An ableist culture assumes the disabled person requires this level of instruction. A pointless sign might reaffirm the stereotype that disability means stupid and incapable.
‘Progressive’ attitudes can disguise a more elusive kind of discrimination. Praising a disabled person for something that is perfectly within their capacity can feel patronising and belittling for the person with a disability. People who have had to strategise their every movement, due to being continually disabled by society, are quite the opposite from incapable. Many disabled people have had to harness organisation and problem-solving skills exactly because their daily routines demand they think ahead and are solution focused. Gestures of support may enhance ones image and signify moral correctness to others, but in a truly inclusive world there would be no “feel good factor” to being nice to people with disabilities - this would simply go without saying.
Able people generally, I am sure, are motivated by care and empathy toward supporting the needs of disabled people. Unfortunately a lack of understanding around disability means a portrayal of empathy can transpire as pity. We must ward against clumsy demonstrations of inclusion that fall short of consulting the people we supposedly seek to reach. The museum must tread carefully when indicating accessibility in the built environment, and not slip up on the same tripwires that so often expose ignorance toward disability.
Of course, we all require access and accommodation, is just that it already exists for some and not for others. We are interdependent beings currently seduced by the myth of independence. We can trace the false idea of self-sufficiency back to theories of human evolution and ‘Man the Hunter’. The self-serving, able-bodied, white, cis-man has been misunderstood as the human default since the beginnings of civilisation. It’s roots are embedded in Capitalism which requires exploitation of “the weak” for economic growth. Of course the irony of a profit-over-people motive is that it is detrimental to the physical and mental wellbeing of workers thus causing sickness and disability. Activists such as Mia Mingus are working toward ways to shift how we understand access from individualised and independence-framed notions, to a more nuanced view of access as a collective standard.
Even the Christian bible promotes the notion of “affliction” as punishment, or even a curse: “And say, Thus saith the King, Put this [fellow] in the prison and feed him with bread of affliction and with water of affliction, until I return in peace.” If Jesus Christ cures the sick and brings them into God, why must one be ‘able’ to be loved by the Heavenly Father? Listening to bible stories of affliction will impact a child’s understanding of disability, who is valued and normal. The perception that people with disability are always in pain and suffering is simply wrong. A story has the the power to either contort or enlighten a person’s perspective on disability, and so can be used as a vehicle for change.
Scene Three: Who Did It?
Confronting the subject of disability as a museum immediately presents the challenge of avoiding framing disability as a problem needing to be solved. The western museum should be careful it does not unintentionally showcase disability for public intrigue or entertainment as it did in the past. The curators who participated in the landmark Rethinking Disability Representation project (RDR) in 2007-2008 were wary of not being seen to promote freak-show approaches when displaying difference. It was the fear of causing offence, rather than ignorance, that had previously prevented these curators from representing disability explicitly in the museum. There were ethical concerns about how to represent the challenging stories of disability. How do we make comprehensive narratives out of incomprehensible histories? How do we explain what happened to disabled people in asylums, the holocaust and freak shows? How do we preserve human dignity in doing so?
The project discovered the participating museums had an abundance of material relating to disability, but most of this material was in store, not on display. If it was displayed - it’s relation to disability was rarely explicit to the viewer. The project proposed nine museums explore alternative approaches to representing disability to develop a politically aware curatorial and interpretive approach. Drawing on the social model of disability, they would produce a host of exhibitions, films and educational workshops that offered audiences new, non-prejudiced possibilities of thinking about disability. Appendix B offers a list of these exhibitions which effectively challenged perceptions around disability with real stories from history and contemporary experience.
Reflections on the museum practice drawn from the RDR report offer an insight to how museums might find new ways of interpreting and displaying permanent or temporary collections. During the Conflict and Disability project at the Imperial War Museum, the social model of disability informed a process of re-interpretation involving school students which drew out the ‘hidden histories’ of disabled veterans from WW1 artefacts. Northampton Museum and Art Gallery used orthopaedic footwear as an entry point to presenting real testimonies from disabled people who rely on wearing specialised footwear. The Tyne and Wear Museum in Newcastle facilitated their own discussion group to help develop a curatorial approach that actively challenged the myths and stereogrteu towards disabled people. Birmingham Museum and Art Gallery also invited local disabled artists to respond to their fine art collections in intensive workshops.
Disabled people must be involved in the creation of museum experiences and yet still today most have very few disabled staff or policies to create suitable conditions for the recruitment of people with disabilities. Genuine collaboration with disabled people was a key factor in ensuring the RDR project found authentic and sensitive ways of depicting disability. A Think Tank of disabled activists, artists and cultural practitioners guided museum staff with their knowledge, understanding and personal experience. Crucially they were encouraged to offer museum staff constructive criticism who were forced to overcome the fear of making mistakes or any feelings that their professional judgement might be under threat. The curatorial team understood that if they wanted to ensure audience interpretations gained from the displayed material were based on real experiences, disabled people would have to be involved in the creative process from the beginning.
When visiting an exhibition about disability people should not be left in bewilderment and confusion about vocabulary. We have seen that prejudicial language can be unwittingly sewn into the everyday workings of an institution. We recognise how language can inspire and exchange ideas but also insult and degrade respect. Disabled people must be involved in all curatorial matters to prevent against ambiguous language born out of hesitancy, or disrespect as a result of ignorance. If museums and galleries are going to highlight impairment issues in society they need to adapt to have clarity in the vocabulary and all communications. Otherwise they will become part of the problem, or at least will throw off course the way toward a solution.
Democratising museums and the institutional learning involved is not easy but RDR shows it is possible. It takes energy, intelligence, reflexivity, curiosity, collaboration funding, and the courage to admit insecurity and fear of getting it wrong. Of advancing museum practice, Mark O’Neill, Head of Arts and Museums in Glasgow said, “in the face of the mockery of ‘political correctness gone mad’ and libertarian arguments as well as genuine difficulties of analysis, the next step only becomes obvious after it has been taken and seen to work.” The research gained from RDR would go on to strengthen understanding across the museum sector so that museums had the confidence and expertise to tackle challenging subjects such as disability in the future. Democratisation is a tricky business even for those who are fully committed, but it is worth it. The value of seeing ourselves represented in culture including museums and theatres cannot be underestimated. It is something the more privileged members of society may take for granted. When the writer Jackie Gay asked actor Mat Fraser about his experience as a disabled actor he recounts a poignant story of when a young disabled boy asked for his autograph having seen him on television: “It was huge to me because I was reminded that without any examples of one’s self on TV or in public view, you can feel different, unwanted, weird, unattractive and undeserving ... That was my experience as I grew up, nothing on my life, or my experience.”
Scene Four: Jimmy Gets the Job
Theatre - that is the act, not the building - is the coming together of the arts to reveal and make sense of human behaviour. Like a picture book the pages turn revealing the human narrative. Discussion and evaluation can be undertaken in the forum of theatre context. It is an ideal mechanism for enabling the disabled voice as the best theatre strips a layer of the screen away to reveal the truth of lived experience. At its worst it can misrepresent, insult and patronise. Disability awareness may be a modern phrase but disabled people have been a part of history since the beginning and so should be represented as such. Their characters should be fleshed out with the same attention to the multifaceted nature of the human condition as able characters. This should be assisted and directed by those with the knowledge of the disabled experience and professional expertise to facilitate the learning of cast and production team. Better still these characters need to be played by disabled actors, who can act. From hiring one disabled actor to be in the role as a character, improvising with visitors, provoking a repose to the themes from the exhibition, to a more theatrical presentation with audience involvement - Jimmy Squarefoot.
Performed by Landau Forte Youth Theatre at the Nottingham Playhouse in 1995, and onto the Schools Proms at the Royal Albert Hall in London, Jimmy Squarefoot presented the audiences with issues of disability through a series of vignettes that portray Jimmy’s life. Multilayered scenes create a non-stop physical, musical and dramatic entity and make for a visual, auditory and tactile experience. This was physical-musical theatre, with heightened gestural expression and music that served the script, not just the song. The music was at equal status with the rest of the elements of the theatre. It was a contemporary concept for its time, fighting the cause on two fronts: the language of theatre and the language of disability - both will have been unfamiliar to many audience members. The writer and director Tony Coffey chose an ‘affliction’ that was absurd - a perfectly cubed black box for a foot - a representation of any difference.
The audience were primed for issues and debate was already happening before the show started. The audience were challenged head-on but in a way that was non confrontational. Provocatively, tickets were advertised first as £3.00, and £5.00 for physically able adults. Each audience member received a programme, also in braille; a ‘song sheet’ with thumbnail diagrams of sign language for a song they would participate in singing during the second act; and a voting paper for the court scene. The highlight would be a programme itself - a spring loaded box which suddenly jumped into shape from flat, folded cardboard. Every performance was signed and had an induction loop so hearing-impaired audience members had a choice about which night they wished to attend. Choice being a critical principle of democracy and equality of opportunity.
The story reveals how the church, state, society and individual institutions socially engineer (in)visible constraints for people with disabilities. Jimmy begins to recognise how peoples attitudes towards his impairments, colours they relationship.
“Jimmy Squarefoot your life has just begun, oh but look what mother nature’s done.”
..sings the minstrel, also the narrator, highlighting, explaining, considering, provoking a response; bringing out attention to the issues Jimmy faces and the challenges of his life to come. At the christening the audience cannot escape the rumouring gossip and contempt towards Jimmy from the local community:
“Have you heard about the baby with the foot tut tut...”
Ironically, the church and the christening act is a piece of forum theatre where all the opinions of the individual and community are expressed.
The minstrel provokes a response saying, “its marvellous what science can do these days.”... emphasising the need for medical intervention; the need for his difference to be cured, put right.
The children of the community accept Jimmy. His mother, with all the compassion in the world, cannot refrain from saying and being surprised by the fact, “he’s just an ordinary kind of boy he’s playing games with boys and toys and plastic guns.”
The vicar proudly announces, “the lord moves in peculiar ways” - that even though it is Gods fault, there is a good reason for Jimmy’s impairment.
A neighbour follows up with, “I know its not a crime but after all the sympathy I’m glad he’s not mine.”
Only once in a song that considers ‘perfection’ does Jimmy complain about his impairment. He decides it is a "very lazy word” and questions god “why he has given him such a hideous deformity” - after being treated as such. Jimmy is resilient, he gets on with life, albeit with a slight limp. It is the society in which the person lives that disables.
To emphasise the dehumanisation of people with disabilities, Jimmy’s girlfriend is called ‘Life on Wheels’. She is a bubbly, self confident, bright and capable teenager with no self pity. Jimmy himself falls foul of impairment etiquette when he asks her if she need a push. She answers “no, I have my arms thank you.”
The piece reaches its climax in a scene where Jimmy supported by now reputable lawyer Life on Wheels, having run an anti-discrimination campaign, is elected as president.
The production ends as it began with the minstrel:
“Jimmy Squarefoot your life has just begun but look what human nature has done.”
This time he is referring to the behaviour of society towards Jimmy and the ‘crippling’ effect of being born with a box on your foot. Jimmy was okay about his difference, no pain, some effect on mobility, but it was the rest of the world that found living with Jimmy’s foot so hard.
In Jimmy Squarefoot the issues are served up in manageable portions where the arguments are clear, and actually reflect real life. The audience ask themselves - do I behave like this is? Would I use that term? The production brought to the surface how embedded misconceptions about disability can impact the life of an ordinary boy.
Jimmy Squarefoot won The Outstanding Performance award in 1995 at the National Music Theatre Festival in support of the Royal School for the Deaf.
Epilogue
We are not being too unrealistic or ambitious to strive to live in a world where activists are not necessary. Where public signs, if needed, and symbols that inform, do not cause offence to any individual, group or minority or clumsily segregate. Where the norm is understood to be the practice of inclusion and equality of opportunity. A world where signs and communication in public places do not insult, or where vocabulary does not disrespect any group, individual or minority. Where lobbying, discourse and negotiation are undertaken in a spirit of tolerance and empathy. Any change that happens quickly, to language or policy, will not impact the system in a nuanced or sustainable way. To achieve a more democratic approach to curating, the context from which it operates must undergo a culture shift, proactively engendered and organised by our cultural institutions.
Collaboration with schools will be vital in exploring more equitable approaches to building an aware and tolerant cultural workforce for the future. Outreach programmes that involve museum professionals going into schools, or vice versa, leading workshops for students to engage in the challenging subjects explored in museum exhibitions. All too often, the ‘lip service’ to diversity and inclusion is about getting the box ticked for an arts council and lottery funding. Let the museum outreach programme be part of the very essence and inner workings of the institution. We will only overcome the fear of making mistakes, of dodging eggshells, with commitment to practise. Practising how to discuss, listen, learn, critique, debate and empathise, crucially with those we seek to represent. It was the Think Tank in the Rethinking Disability Representation project that bridged the gap between the lack of disability related expertise in museums, and the awareness that representing disability requires the involvement of first-hand experience. The legacy of Jimmy Squarefoot is a group of young people who are now active citizens in their community who developed an understanding of disability through theatre. Jimmy has left the building but his message still resonates. The measure of success of a community is the adherence to respect, born out of knowledge and awareness of all.
References
“About the campaign”, Not Every Disability is Visible, accessed April 14, 2020, https:// www.noteverydisabilityisvisible.org.uk/about-the-campaign.
“Access Intimacy, Interdependence, and Disability Justice,” YouTube video, 1.10.03, posted by San Franciso State University, May 10, 2017. https://www.youtube.com/ channel/UCr87NaiMCYAGU5dq3phYT7A
Coffey, Tony. Interview by Molly Coffey. Personal interview, Guernsey, Channel Islands, December - January, 2021.
“2 Chronicles 18:26”, biblehub.com, accessed February 2, 2021. https:// biblehub.com/2_chronicles/18-26.htm.
Tony Coffey, “Jimmy Squarefoot,” tonycoffey.com, accessed: February 2, 2021. https://www.tonycoffey.com/jimmy-squarefoot
“disability (n)”, Online Etymology Dictionary, accessed April 14, 2020, https:// www.etymonline.com/word/disability.
“Equality Act 2021”, legislation.gov.uk, accessed February 2, 2021, https:// www.legislation.gov.uk/ukpga/2010/15/section/50.
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Mia Mingus, “How our communities can move beyond access to wholeness” Leaving Evidence, February 12, 2011, accessed February 2, 2021: https:// leavingevidence.wordpress.com/2011/02/12/changing-the-framework-disability- justice/.
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Philip Inman, “Changes to disability benefits costs £4b in extra welfare payments”, The Guardian, January 15, 2019, https://www.theguardian.com/society/2019/jan/ 15/disability-benefits-reform-costs- government-4bn-in-extra-welfare-payments.
Press Association, “Disabled people challenge bedroom tax at supreme court”, The Guardian, February 29, 2016, https://www.theguardian.com/society/2016/feb/29/ disabled-people-challenge- bedroom-tax-at-supreme-court.
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Appendix
A. There are 14.1 million disabled people in the UK.
- 8% of children are disabled
- 19% of working age adults are disabled
- 44% of pension age adults are disabled18
More than 4.1 million disabled people are in work.
Disabled people are more than twice as likely to be unemployed as non- disabled people.19
Life costs you £583 more on average a month if you're disabled.20
After housing costs, the proportion of working age disabled people living in poverty (26%) is higher than the proportion of working age non-disabled people (20%).21
The total spending power of families with at least one disabled person is estimated at £274 billion a year.
1 in 3 disabled people feel there’s a lot of disability prejudice.
1 in 3 people see disabled people as being less productive than non-disabled people.
In 2000, 37% of disabled people and 34% of non-disabled people felt that there was a lot of prejudice around disability. The gap trebled by 2017, with 32% of disabled people and 22% of non-disabled people feeling there is a lot of prejudice against disabled people.22
In Britain, an increase in state support during the 1990s has since been cut due to austerity measures.
In 2013, the bedroom tax unfairly penalised people with disabilities for requiring extra beds in other rooms.
“Fit for work” assessments led to a significant reduction in disability benefits resulting in a substantial increase in morality within weeks.
The test taken to assess whether someone requires Personal Independence Allowance started retesting patients with incurable diseases.
B. This list was drawn from the Rethinking Disability Representation in Museums and Galleries report23 published by the Research Centre for Museums and Galleries (RCMG) detailing exhibitions that took place 2007-2007 across the nine participating museums:
Life Beyond the Label, Colchester Castle Museum, Colchester and Ipswich Museums Service.
One in Four: Exploring Experiences and Attitudes Surrounding Disability, Discovery Museum, Newcastle upon South Shields Museum and Art Gallery, Tyne and Wear Museums.
Lives in Motion: Transport and Disability, Glasgow Museums - Museum of Transport.
Behind the Shadow of Merrick, Royal London Hospital Archives and Museum.
Daniel Lambert: An Exalted and Convivial Mind, Stamford Museum.
Talking about...Disability and Art, Birmingham Museum and Art Gallery.
I Stand Corrected? New Perspectives on Orthopaedic Footwear, Northampton Museum and Art Gallery.
Conflict and Disability, Imperial War Museum London.
A Whitby Fisherman’s Life: ‘Stumper’ Dryden Through the Lens of
Frank Meadow, Sutcliffe, Whitby Museum.
