The Disabled People's Movement and Disability Arts

Though there is evidence of a longer radical tradition among groups of disabled people in Britain (Humphries and Gordon Reference Humphries and Gordon1992), it is not until the end of the 1960s and into the 1970s, in the radical activity of individuals like Paul Hunt and groups such as the Union of the Physically Impaired Against Segregation (UPIAS), that the self-organised, modern social movement of disabled people appears (Campbell and Oliver Reference Campbell and Oliver1996). The key idea around which this movement was organised is the social model of disability, through which the meanings of the terms impairment and disability are redefined.

Within this view, disability is shifted from being an individual problem and is understood as an unequal social relationship, as ‘something imposed on top of our impairments by the way we are unnecessarily isolated and excluded from full participation in society … disability is, therefore, a particular form of social oppression’ (UPIAS 1976).

It has been argued (Swain, French and Cameron Reference Swain, French and Cameron2003, p. 24) that this relationship emerged during the industrialisation of society with the advent of the factory system as the dominant means of production. People with impairments became identified as unable to meet production norms and were removed and excluded from the social mainstream. Since then they have found themselves isolated and segregated in asylums, hospitals, communities, hostels, sheltered employment, special schools, day centres. Modern towns and cities have been built and developed – both in terms of physical access and in the way that public services have been planned and delivered – on the assumption that there is no requirement to take the needs of people with impairments into account because they are not expected to actively participate. People with impairments are, thus, disabled by the society in which they live. The social model definitions given here were later extended by the Disabled People's International to include people with sensory, emotional and intellectual impairments (Barnes Reference Barnes1994, p. 2).

This understanding of oppression echoes and draws from that of other identity-oriented social movements (the black civil rights movement; the women's movement; the gay rights movement):

In Britain, the late 1970s and 1980s saw rapid growth in the political activity of disabled people. This included the development of local coalitions which worked to influence the planning and delivery of public services; Centres for Independent Living which campaigned for financial structures to be established so that disabled people could take control over their everyday lives; and the establishment of the British Council of Organisations of Disabled People which, among other roles, took a major hand in organising the campaign for full civil rights legislation which resulted in the passing of the Disability Discrimination Act in 1995 (Campbell and Oliver 1995). Allan Sutherland has commented that:

The Disability Arts Movement emerged from the mid-1980s onwards as disabled people began to develop their own voices and perspectives rooted in an understanding illuminated by the social model. According to Paddy Masefield,

The ‘truth’ of which Masefield speaks here is a truth stripped of the distorting sentimentalisation and pathologisation that characterises mainstream representation of disability. Through the organisation and development of cabarets, festivals, exhibitions, performances and workshops (Sutherland Reference Sutherland2005), the Disability Arts Movement created social spaces in which disabled people could come together to share and explore with each other insights and perspectives on situations that had previously only been experienced individually. As Elspeth Morrison and Vic Finkelstein have argued:

In terms of discussions on popular culture (Storey Reference Storey2005, p. 4), disability arts embody resistance to hegemonic pressures of incorporation and refusal by disabled people to identify themselves as dominant culture represents and seeks to recognise them. The shift this social, cultural and theoretical model facilitates is also a pragmatic process, as Lory Britt and David Heise have observed:

The humour expressed in disability arts lyrics is observational, often highlighting the absurdity that characterises expectations held by the non-disabled about disabled people or the offence generated by the non-disabled in their interactions with disabled people. An issue here is that, as Iris Young observes, ‘while structural oppression involves relations among groups, these relations do not always fit the paradigm of conscious and intentional oppression of one group by another’ (Young Reference Young1990, p. 41).

Disability oppression often takes the form of interference from either officious or well-meaning non-disabled people that is experienced as limiting and infantilising. It is not that these people think of themselves as oppressors but simply that, through their condescension, they are reinforcing oppressive social relations. Janet Read has talked of encounters with ‘a strong whiff of charity’ that are experienced by disabled people as difficult to manage:

It is because this is experienced by many disabled people as difficult to respond to that humour can provide an effective release. Statements can be expressed in the lines of a song that, while reminding disabled people of the humiliating situations in which they have been placed, can raise a laugh. Disability arts offer a different perspective, rooted in the social model, which suggests that these situations have not arisen because of who disabled people are as individuals, but because of other people's ignorance and because society is organised as it is. This offers hope that, through collective action and education, something can be done to bring about change. Furthermore, something funny will often remain in the mind in ways that lofty rhetoric will not (Branagan Reference Branagan2007).

The blues of Johnny Crescendo

In a description of why he wrote the song ‘I Love My Body’, blues singer and guitarist Johnny Crescendo (aka Direct Action Network organiser Alan Holdsworth) tells of how during his formative years he had neither mixed with other disabled people nor felt comfortable with his impairment.

This twelve-bar blues song involves a reclamation and affirmation of self and identity. The strength in these lines is rooted in a rejection of cultural norms and an assertion of the right to be different.

In the late 1980s, while working in Chesterfield as a youth worker running a project for people with learning difficulties, Crescendo wrote the song ‘Choices and Rights’, which was later adopted as the anthem of the disabled people's movement. He joined the Derbyshire Coalition of Disabled People where ‘people began to hear “Choices and Rights” and started booking me for gigs’ (quoted in Campbell and Oliver Reference Campbell and Oliver1996, p. 118).

While Crescendo's music and lyrics are mostly blunt and direct, using traditional blues and rhythm and blues sounds to accompany a clear and direct political message, his observational humour and direct language come through most clearly in his performance poetry. ‘Disabled People aren't Allowed to Say “Fuck”’ (Holdsworth Reference Holdsworth1989a, p. 9) was written after he had been booked to perform at a residential home but had been told to ‘mind his language’.

Here Crescendo contrasts the offensive and oppressive use of medical and emotional jargon that is routinely applied to frame the conditions and lives of disabled people with the offence that might be caused by the possibility of a disabled person swearing. So culturally entrenched is the stereotype of the disabled person as diminutive passive victim that the possibility that disabled people might utter this coarse word is considered appalling.

Crescendo makes the point that, while disabled people might be expected to be able to list the names of all the celebrities who have given time to raise funds for charities purportedly supporting their interests, they are not allowed to express themselves in terms considered vulgar. Such a thing would be to express ingratitude and would represent a failure in ‘coming to terms’ with their conditions (Marks Reference Marks1999). While some of the celebrities listed here have either died or dropped out of sight, their functional role has been filled by others. As Paul Taylor and Jan Harris (Reference Taylor and Harris2008) suggest, celebrities are pretty much interchangeable.

Crescendo's final point is made by naming terms through which disabled people are encouraged by mainstream culture to recognise themselves. The discourse of ‘specialness’ provides a particularly seductive lexicon, suggesting that the needs of people with impairments are most appropriately met within segregated settings outwith the mainstream. Crescendo finishes, however, by drawing the listener back to reality.

The power of this piece is enhanced by the context in which it is performed. At an arts event attended by disabled people who have experienced countless restrictions upon what is considered acceptable to say simply because they are disabled, the very fact that a disabled person is on stage saying the word ‘fuck’ is funny, daring, challenging. At a deeper level there is an appreciation of the absurdity that disability oppression involves. The abuses of human rights which are considered justifiable in order to maintain a veneer of respectable normality are profound.

In ‘Where d'ya Get that Leg?’ (Holdsworth Reference Holdsworth1989b, pp. 6, 7) Crescendo reflects on the stupid, unwanted interference of the non-disabled:

The asinine nature of the interminable questions, remarks and comments about their impairments that disabled people have to put up with is illustrated here. What is experienced as objectifying intrusion when experienced all of a sudden, from out of nowhere, as one is going about minding one's own business, can be seen as ridiculous when turned into a performance piece. After coming out with a barrage of other similar questions, reflecting the relentless persistence with which disabled people are harried, Crescendo finishes – in a taboo-busting gesture of masculine aggression – by throwing some questions of his own back on the questioner:

The folk music of Ian Stanton

Ian Stanton was someone who instinctively enjoyed challenging non-disabled authority. While editor of Coalition, the journal of the Greater Manchester Coalition of Disabled People, his musical career began in clubs around Oldham in the north-west of England and led to performances at day centres, disability arts gigs, Direct Action Network actions, Glastonbury Festival and Vancouver Folk Festival.

In the sleeve notes to Stanton's 1992 Freewheelin' cassette, Johnny Crescendo comments that Stanton ‘has been described as “the Bob Dylan of the disability arts movement”. But “old slaphead from Oldham”, as we know him, is much better than that’. Folk singer Stanton's songs range from the emotional ‘We've Got Each Other’ and ‘A Bloody Funny Way’ to the rousing rights anthems ‘Tragic but Brave’ and ‘Rollin’ Thunder'. While his tunes range from cheery pub sing-alongs (good for encouraging audience participation) to melancholic ballads, it is in his lyrics that Stanton's comedy lies (Martin Reference Martin2008). As with Crescendo, the admixture of anger at injustice with dry humour is a key tactic.

Adam Martin (Reference Martin2008) has stated that ‘the structure of “Chip on yer shoulder” sounds like a joke being delivered: the verse is like a slow build-up in its pace, leaving the listener hanging on, whilst the chorus is the punch line in the way it is belted out’. In this song, Stanton pokes fun at various representatives of non-disabled petty officialdom, including cinema and railway staff. Drawing on personal experience of being an amputee and a wheelchair user, he sings of the experiences of being placed in uncomfortable and demeaning situations, which are both site-specific (cinema, train) but also resonate with wider questions of social mobility, access, pleasure for disabled people:

It is expected, Stanton observes, that disabled people will put up and shut up about the little humiliations they are expected to endure on a daily basis and just be thankful that they are permitted at all to be present in public spaces or on public transport. If, however, a disabled person does have the audacity to complain about the situation:

What is reflected here is the oppressive situation in which, in everyday life, disabled people are identified in terms of stereotypes. Resisting categorisation in terms of one stereotype (passive, uncomplaining victim) simply leads to being identified in terms of another (bitter and twisted) (Swain and Cameron Reference Swain, Cameron, Corker and French1999). Finally, Stanton draws us back to the stranger who feels no awkwardness in asking personal questions:

Disabled people are expected to keep up their happy smiles, to always be ready with the cheery riposte, the joke, to be able to laugh at themselves. In his concluding thoughts, Stanton questions the ability of the stranger to see beyond the stereotype. What makes this both funny and empowering for disabled audiences and listeners is the familiarity of the situation. To have to put up with being patronised and infantilised when the only challenging response that can be made leads to being patronised and stereotyped in another way is a frustrating experience. In ‘Chip on yer Shoulder’, Stanton provides the words with which to begin to understand these encounters in a different light. Dorothy E. Smith states that ‘a critique is more than a negative statement. It is an attempt to define an alternative’ (Smith Reference Smith1987, p. 78). To be able to begin to understand these interactions in terms of absurd roles grounded within oppressive social relations offers a way of seeing how things might be otherwise.

In ‘Remember Douglas Bader’, Stanton draws attention to the way in which figures considered edifying role models are held up to disabled people as exemplars.

In this song, Stanton draws attention to the way in which, within contemporary mainstream culture, disability is represented as something to be both endured and overcome. The reference in the lyric by the medical doctor is to Group Captain Sir Douglas Bader (1910–1976), the ‘famous W[orld] W[ar] 2 limbless fighter ace and leader’ (Douglas Bader Foundation) who was presented as an inspiring caricature in the 1956 film Reach For The Sky. As a figure to emulate, Bader is used here to illustrate the ways in which disabled people are repeatedly told that the main thing is attitude; that the problems they experience can be conquered simply by having the right frame of mind. The doctor in the song is dispensing the medical model, the idea that disability is something wrong with the bodies of disabled people that can be overcome with courage and determination.

In writing and performing these lyrics, Stanton draws attention to the ways in which stereotyping demeans disabled people. For those who feel that ‘every bead of sweat’ and ‘every muscle strained’ (Stanton) is a price worth paying in order to pass, to appear normal and non-disabled, what is also involved is an alienation from the self. The idea that disabled people can gain recognition and validation only by becoming what other people want them to be is identified by Stanton as part of disability oppression.

Stanton's lyrics reflect the time at which they were written. He died in 1998 and did not live to see many of the access improvements that have been made – for example, in cinemas and trains – over the past decade. But it is a fact that his songs inspired the movement that campaigned for legislation to force these improvements. While real inclusion as equals within the social mainstream is still a long way off for disabled people, the debt owed to Stanton remains.

The punk rock of the Fugertivs

The Fugertivs was a trash/punk band that emerged from the wreckage of a disability arts project run in Sunderland in north-east England by Tyneside Disability Arts (TDA) in the late 1990s. One of the project participants had been overheard in a shop singing lyrics from ‘The No Hope ATC’ (Sheader), a song musing on the bleak prospects involved in perennial attendance at an ‘ATC’ (Adult Training Centre).

This matter was reported to the local authority and the disabled people involved in the project were told to have no further involvement with TDA (Sheader, quoted in McConnell Reference McConnell2005). The remaining project members carried on working together in North Tyneside. Karen Sheader, lead singer of the Fugertivs, recounts that:

Retaining the original spelling of the band's name by lead guitarist Niall Raftery, who has dyslexia, the Fugertivs brought a ‘new’ sound to the disability arts scene which, according to Johnny Crescendo, had after a decade become ‘sick of one man and his guitar’ (McConnell Reference McConnell2005). Drawing heavily upon standard punk riffs but also purloining other styles, the Fugertivs played at disability arts gigs across the north of England, at the Independence Festivals in Manchester and Birmingham, and regularly at Direct Action Network demonstrations.

While the Fugertivs' sound was new (in disability arts terms), their song lyrics remained rooted in anger at disability oppression, even where ironically presented, as in the title of their 1999 CD, Joyful Noise. Adam Martin (Reference Martin2008) has stated that ‘while the Fugertivs could perhaps be described as less technically gifted than Ian Stanton, their DIY sound goes hand-in-hand with the rebellious nature of their lyrics and themes’. The raucous ‘Melissa’ (Sheader), for example, offers a simple driving rhythm twinned with a direct message. This song involves an exchange between a disabled woman and her carers, sung in regional language. Melissa aches to be able to make decisions for herself but her carers have other ideas, and mock her ambitions to selfhood and life choices around sexual activity and independence:

Voiced by Niall Raftery, Andrew Kerr and Mandy Metters, these statements are expressions of a care that is experienced by many disabled people as stifling and oppressive (Swain and French Reference Swain, French and Brechin1998). Simon Brisenden has commented that, when disabled people are forced to remain at home, dependent upon assistance, this ‘exploits both the carer and the person receiving care. It ruins relationships between people and results in thwarted life opportunities on both sides of the caring equation’ (quoted in Hasler Reference Hasler, Swain, French, Barnes and Thomas2004, p. 227). Over-protection is an issue familiar to disabled people. Dependency is created on both sides of the caring relationship and carers often find it very difficult to let go. When the Fugertivs bawl out the words and concerns of controlling carers, these are seen for what they are: fears which would rather stifle than set free. They are revealed as grotesque, as part of disabled people's oppression.

Through long campaigning, the Independent Living Movement has seen established direct payments systems through which local authorities are required to make available funds so that disabled people (assessed as eligible) can directly employ their own personal assistants and take control of their own lives (Mercer Reference Mercer, Swain, French, Barnes and Thomas2004). In the last verse of this song, Melissa (whose lines are sung by Karen Sheader) has managed to break free of the family home and is living as she wants to:

Dependency is not the inevitable outcome of impairment, but is socially created. While care is a heavily loaded word, a real concern with social justice would address the environmental and cultural barriers which maintain that lack of privacy, freedom and trust.

In contrast to the solo voices of Crescendo and Stanton, the use by the Fugertivs of multiple vocalists works to create both a sense of tension and comedy effect. The voices of the parents/carers/interfering busybody in ‘Melissa’ and ‘Bar-room Bollocks’ are in north-eastern accents (almost to the extent of parody),

In ‘Bar-room Bollocks’ (Sheader), the Fugertivs re-visit that familiar presence around disabled people, the obnoxious stranger who feels free to pass comment, the regular who holds forth ‘in an irritatingly public manner’ (Miller and McHoul Reference Miller and McHoul1998). This song is narrated by three characters, the first (Karen Sheader) being a garrulous ‘character’ at the local pub, and the others (Niall Raftery and Mandy Metters) two disabled people who have had to listen to the regular's offensive ramblings:

The unwanted sympathy and annoying condescension of the non-disabled towards disabled people on the understanding that impairment equals personal tragedy is voiced here. While disabled people have demanded, and are increasingly seeing, access to public spaces, what is suggested here is that they are more often met with patronising tolerance rather than with respectful acknowledgement as equals.

What makes these remarks insidious as part of an oppressive discourse on disability is that the regular apparently considers herself enlightened. There is no conscious intention to be dismissive but by measuring impairment against the ideological standard of normality, she draws favour upon herself and those she identifies as her peers (‘normal folk’) at the expense of disabled people. This woman fails to recognise her own oppressed situation within late capitalism or, at least, finds it easier to bear so long as there are others she can identify as being ‘worse off’. ‘Bar-room Bollocks’ draw attention to the ludicrous nature of such statements.

In letting the regular know what they think of her, the two listeners express the anger of all disabled people who have found themselves, in everyday life, being subjected to little acts of degradation; being reminded, in chance encounters, glances, comments, that ‘we need to know our place in the world’ (Montgomery Reference Montgomery2006). The song closes with a lengthy (one and a half minutes) repeated and then fading phrase: