These essays were written by our Artistic Director Dr Ju Gosling FRSA in 2006, while she was the artist-in-residence at the National Disability Arts Collection and Archive (NDACA) at Holton Lee, but are still highly relevant today. The facts and issues discussed here are key reasons why Together! 2012 CIC was founded and underpin our work.
What is Disability Arts?
This is a question that Disabled artists have been struggling to answer since the international Disability Arts Movement began.
What it isn’t:
It is easiest to start off with what Disabled artists generally agree that Disability Arts is not:
Disability Arts is NOT art made about experience of impairment i.e. art that takes a disability or medical condition as its subject.
- Disability Arts is NOT art made by disabled people that fails to take experience of disability as its subject.
Disability Arts is NOT art made by non-disabled people that takes disability as its subject.
Disability Arts is NOT art that is controlled by non-disabled people.
However, none of these definitions are strictly true.
Within our society, images of impairment are largely invisible. Where impairment is made visible, it is usually portrayed within the Medical or Charity Models of Disability, and it is usually non-disabled people who are creating the images. So it can be argued that when Disabled artists make work about our personal experience of impairment, this is inherently political. It is political because the work is challenging the invisibility of impairment, and it is political because the work is under the direct control of disabled people.
Feminists have also believed for a long time that it is important to make physical experiences of life visible and to discuss and make theory around them, and particularly when these experiences are different from those of white, non-disabled men. Many lesbian, gay, bisexual and transgendered (LGBT) theorists agree with this, as do Black activists.
- Feminist theory also legitimises the fact that the personal is political, and has challenged traditional ideas of what is a valid subject matter for art.
- So it may be that the refusal to accept work about impairment as being Disability Art comes from the dominance of white male heterosexual artists within the Disability Arts movement, rather than from any deeper theoretical objection.
- Artists who identify as Disabled have a different world view to non-disabled artists. For example, we believe that there is no such thing as a divide between the mind and the body. We also believe that neuro-diversity should be celebrated, rather than a rational mind being a goal to strive towards. This affects our whole approach to our work – for example our use of colour, since ‘acceptable’ colour palettes have traditionally reflected the ‘Cartesian’ mind/body divide. So even when the subject of our work has nothing to do with disability, the work may still be fundamentally different than it would be if we did not identify as Disabled. Which means that it IS still Disability Art.
- Artists are assumed to be non-disabled (and white, and male). So when, for example, a blind woman creates a painting or directs a film, or a Deaf man or a man with learning difficulties choreographs and performs their own work, they embody a challenge to this discourse; their art is revolutionary merely through existing. Therefore it can be argued that all work produced by disabled artists is Disability Art, whatever the subject matter.
- Non-disabled people may share our experience of disability, as our partners, parents, children, family members, friends, carers and personal assistants. If they are artists, they could potentially make work about this experience. It would NOT be Disability Art if disabled people are stereotyped within it, and/or if a non-Social Model of Disability is used, and/or if the artist seeks to speak for disabled people. But it MIGHT be Disability Art if non-disabled artists use the Social Model of Disability, and focus on their own experiences within their work.
- Generally speaking, art produced in environments that are controlled by non-disabled people is not defined as Disability Art even when all of the participants are disabled. But an art student might well choose to make work about their personal experience of disability when the lecturers and other students are non-disabled, and be supported to do this (though the majority are told instead that they should NOT). This WOULD be Disability Art.
- And some communities of disabled people, particularly people with learning difficulties, benefit from having their work facilitated by non-disabled people/disabled people from different impairment groups. Whether or not this is defined as being Disability Art depends on whether disabled people are enabled to have the greatest possible control over all aspects of the activity (though this is more often NOT the case).
What it is:
Disabled artists do agree that the Social Model of Disability is at the heart of the Disability Arts movement. Using the Social Model of Disability, the Disability Arts movement challenges the fundamental belief systems that govern 21st-century society in the developed world.
The Disability Arts movement challenges the belief that impairment is abnormal. It returns impairment to its rightful place as an integral and normal part of human experience.
The Disability Arts movement challenges the belief that Disabled people are intrinsically different to non-disabled people. It highlights the facts that anyone can become disabled, and that the vast majority of us will become disabled at some point before we die.
- The Disability Arts movement challenges the belief that disabled people are less equal and less deserving of full human rights than non-disabled people. It demands equality for all.
- The Disability Arts movement challenges the belief that impairment is a tragedy, and that disabled people have a poorer quality of life than non-disabled people as a result of our impairments. It highlights the fact that what affects disabled people’s quality of life is prejudice and discrimination.
The Disability Arts movement challenges the belief that prejudice and discrimination against disabled people is normal. It highlights the fact that the barriers disabled people face are created by society, rather than resulting inevitably from our impairments.
The Disability Arts movement challenges the belief that medical science is one step away from eradicating impairment and creating immortality. It requires society to recognise the limitations of science, to face up to reality, and to change accordingly.
- The Disability Arts movement challenges the dominant discourse of perfection. It points out that we can only be happy when we accept the reality of the human condition as being vulnerable and imperfect.
The Disability Arts movement challenges the belief that only non-disabled people can make art. It reminds the art world that many of the great artists of the past have been disabled.
We make these challenges in work that includes poetry and other writing, dance, theatre, live art, cabaret, music and other performance, as well as visual arts such as painting, photography, film and video – and, of course, multi-media. Our work covers the same subject matter as other artists – life and death, relationships, landscape and the environment, spirituality and so on. Disability Art, though, is the art of most resistance.
The Disability Arts audience
The Disability Arts movement began alongside the Disability Rights Movement. Live performances grew out of disability rights campaigners’ experiences, and were produced alongside political actions.
Initially, only disabled people were interested in the work. And the only opportunities disabled artists had to present their work was in segregated settings.
- However, the work produced by the Disability Arts movement is aimed at everyone, and everyone can relate to it. Increasingly, a majority of audience members are non-disabled.
- Disabled and non-disabled audience members may experience the work differently. But all art work is experienced differently by different people.
- As with other Fine Art movements, we are as much part of the mainstream as we are separate from it.
Is there a future for Disability Arts?
There has been a lot of discussion over the past year or so [2005/6] about whether or not there is a future for Disability Arts. The following are some of my thoughts about this.
Ghettoising Disabled artists
Many Disabled artists feel increasingly unsure about being defined as disabled. They are questioning whether identifying – or being identified – as part of the Disability Arts movement is ghettoising them and is denying them mainstream recognition. Surely, they say, we should simply be seen as ‘artists’?
This is a question that has already been discussed for many years by the Feminist Art Movement. The Feminist Art Movement peaked in the 1980s, with women artists today rarely identifying as part of it. Only the American artists’ collective The Guerrilla Girls continues to campaign actively around feminist issues in the art world, and all of its members disguise their identities behind gorilla masks and the names of dead women artists.
But despite today’s lack of interest in feminism as it affects the arts, women artists – both disabled and non-disabled – are still very heavily discriminated against in the art world. Only about 5% of work in exhibitions and collections is by women, and women artists still earn far less than men. For example, women ‘Brit’ artists such as Tracey Emin may receive £100,000 for a significant piece of their work, but their male colleagues such as Damien Hirst will receive £5 million. Contemporary women artists like Tracey are now beginning to question whether feminism is actually just as significant to them as it was 20 years ago, as Tracey discussed in her recent  film for Channel 4.
So, the fact that women artists today simply identify as ‘artists’ has not prevented them from being discriminated against throughout the art world for being women. If they had continued to support the Feminist Art Movement, they might actually have come closer to achieving their goal of being recognised as equal to men.
In the same way, Disabled artists will be treated by the art world as being disabled whether or not we identify as such. Opting for invisibility is more likely to increase the discrimination that we face, rather than lessening it.
Throughout history, many male artists have of course been disabled, although this is no longer acknowledged. But they lived during a period when the division between disabled and non-disabled people was much less important – we do not. And Disabled women artists will be identified as and be discriminated against for being women too, whether or not we ignore this fact.
Having Pride in who we are, and being part of an art movement which challenges definitions of ‘normality’ and ‘disability’, is in still the only way to achieve equality.
Another reason why the future of Disability Arts is being debated is that disabled actors and other performance artists are reporting falling audiences for their work. However:
- There is no research to show that audiences are falling, only anecdotal evidence. Many Disability Arts productions have very large audiences, particularly for artists like Mat Fraser and for companies like Graeae theatre company. So audiences may not in fact be declining at all.
- In the early days of Disability Arts, in the 1980s, social services departments would organise group visits to our performances and productions. Today, far fewer disabled people take part in these group activities because of the widespread closure of day centres etc. Social workers are also far more aware now of the radical content of Disability Arts, and often find it deeply threatening (as it is supposed to be!). So social workers are far less likely now to support and fund group visits to performances and productions than they were previously.
- According to the Government’s Equalities Review – and in contrast to what most people believe – disabled people are less equal in society now than we were 20 years ago. This means that, in comparison to 20 years ago, disabled people are less likely to be able to fund visits to performances and productions than we used to be. This is heightened by the fact that we often have to fund taxi and personal assistance costs on top of ticket prices, and may have to pay full price for a ticket for a personal assistant or companion to come with us too.
- At the same time, ticket prices for performances and productions by disabled people have risen sharply, whereas in the early days of Disability Arts, many were free. This is partly due to fewer grants and other subsidies being available, and partly because Disabled artists have felt that their work is more likely to be regarded as being professional if they charge a commercial rate to see it.
- So if audiences are declining, it is more likely to be due to disabled people being unable to afford to attend rather than disabled people choosing not to come. As Disabled artists, we must remember this when arguing for grant subsidy and when setting ticket prices.
Another reason why the future of Disability Arts is being debated is that disabled people now have the right to access mainstream training, performances and productions. Before 1999, we had no right to attend courses or productions, nor did anyone have to make arrangements to meet our access needs. Before 2005, training providers, theatres and other venues did not have to alter their premises to remove physical barriers against disabled people, like unnecessary steps. Now we have a theoretical right to attend all courses and performances, which might make Disability Arts training, performances and productions irelevant. However:
- In reality, many theatres and other venues are still not physically accessible. Although they have known since 1995 that they need to be accessible by now, they have not allocated any money or conducted any fundraising to ensure that this is the case. Now they say that they cannot afford to make the improvements necessary in order to create good access.
- Many new publicly funded arts buildings are accessible in theory only: the access may be very poor in reality even when the venue claims to be a model of good access. The building regulations on disabled access only provide for a minimum standard that can still cause signficant problems for many disabled people. Many venues fail to understand that this is a minimum standard, and regard it instead as a standard of best practice that it is therefore unrealistic to expect to achieve in full.
- Many arts training providers are still only making the most basic or token attempts to include disabled trainees, and are in fact therefore inaccessible to the majority of disabled people.
- So-called accessible venues may still have a strict quota on how many disabled people can attend. For example, the National Film Theatre (NFT) only allocates two spaces for wheelchair users in two of the three cinemas used for the London Lesbian and Gay Film Festival. I am co-chair of Regard, the national disabled Lesbian, Gay, Bisexual and Transgendered (LGBT) organisation, and we have nine wheelchair users on our executive committee alone. We want to go out as a group of friends to events like this – and, of course, many LGBT couples where one or both are disabled want to attend too. This year, Regard wrote to the NFT to ask them to provide the same number of wheelchair user spaces at the Lesbian and Gay Film Festival as they do at the Disability Film Festival, as well as duplicating other access arrangements like having audio description available. And we wanted them to stop official festival cars from using the Blue Badge parking spaces and so preventing disabled people from attending. The NFT did not even bother to reply to us. This is despite the festival receiving Lottery funding.
- So-called accessible venues may also have a policy of restricting disabled people to the most expensive seats. For example, spaces for wheelchair users may be at the front of the stalls, with no access to the cheaper seats behind and above. Venues may also refuse to discount seats for people who need to sit at the front, such as people with visual and hearing impairments. Since disabled people have the lowest incomes of any group in society, this makes it very difficult to afford to go out, particularly as we often have to fund taxi and personal assistance costs on top of ticket prices, and may also have to pay full price for a ticket for a personal assistant or companion to come with us in order to attend.
- Staff and audience members can also make going out a difficult and unpleasant experience for disabled people. They may believe that the presence of disabled people spoils the training experience for non-disabled people, or spoils their own enjoyment of a performance or a production, or spoils the image of a venue, and so do everything they can to make disabled people feel unwelcome. Or they may simply be ignorant about how their behaviour affects disabled people’s experience, for example by preventing disabled people from using an accessible toilet by using it themselves, or by failing to ensure that non-disabled trainees or audience members do not use it.
Although we now have equal rights in theory to access the mainstream, the reality is very different. This is a good-enough reason on its own for Disability Arts performances and productions to continue.
Focussing on making the mainstream accessible
As there are still considerable barriers for disabled people within the mainstream, some people in the Disability Arts movement argue that we should now turn our attentions to helping the mainstream to improve disability access and inclusion, rather than providing an alternative. It is also argued by funders that the time has come to stop funding Disability Arts, and instead to encourage disabled artists to access mainstream provision. However:
- Many disabled people have never been to an arts exhibition, performance or film festival, or believe this is not something they can continue to do now that they have become disabled. Few disabled people have considered that it is possible for them to become artists. Attending Disability Arts exhibitions, film screenings and productions acts as an introduction to the mainstream for disabled people who have been isolated from it, while the artists represented within these act as role models. Disability Arts therefore enable disabled people to access mainstream arts activities, both as audience members and as artists.
- Disabled arts trainees may find that the way a course is structured makes it inaccessible to them, however accessible the venue and teaching methods might be.
- Two-thirds of disabled adults have acquired their impairments. Many wish to retrain at this point, as do disabled people whose access needs change with age. They often feel that they need to discover their potential and limitations in a fully accessible, supportive environment, where everyone present has personal experience of disability, before considering a return to the mainstream.
- Disabled trainees often feel isolated within a mainstream arts environment where everyone treats them as being exotic and different, and no one fully understands their life experiences or access needs. Many drop out as a result, or are put off from applying in the first place. Arts training where everyone present is disabled allows trainees to focus on being artists rather than on their impairments and access needs.
- Disabled people have fewer educational and training opportunities than non-disabled people. For example, half of all disabled 16-year-olds are not in work, education or training, and half of all disabled adults do not have any qualifications at all. This means that disabled people are disadvantaged when applying to mainstream courses, even when the appplication process itself has been made accessible (which it quite often isn’t).
- So if we don’t provide arts training specifically for disabled people, many disabled artists will not be able to access training at all. Of course we should support disabled artists’ right to enter mainstream training, but we have to recognise that this will not always be possible or appropriate.
- The same applies to grant funding opportunities. As well as being disadvantaged in accessing training, Disabled Artists are also disadvantaged in accessing networking opportunities. For example, we may not be able to get into a gallery opening, or may not be able to see who is there, or may not be able to hear against background noise, or may not have access to a BSL interpreter to enable us to communicate with the other people there. We may also be isolated in other ways too from non-disabled artists who pass on information to each other, because their studios are inaccessible to us and/or because they regard us as being exotic and different.
- And we are discriminated against in the workplace, meaning that we have less access to residencies and commissions. On top of this, many mid-career disabled artists are forced for various reasons to remain on state benefits and so are unable to take up paid residencies or commissions or to sell their work. So our CVs will often be less good than non-disabled artists when applying for mainstream grant funding. This means that it is important to continue with bespoke grants for Disabled artists, as well as encouraging artists to apply for mainstream opportunities.
- Venues, trainers, performers, producers and directors all have a legal responsibility to ensure that their courses and productions are accessible to everyone, and that they do not discriminate against the people they employ. Many also receive public funding, which everyone including disabled people contributes towards, and are legally bound by their funders to cater for all audiences. We shoud not encourage them to believe that they are doing us a favour by opening out access, nor that it is disabled people’s responsibility to do this for them, nor that they have a choice.
- If trainers, venues and staff need training and support to fulfil their legal responsibilities, then there are plenty of disabled consultants and trainers available that they can pay to provide this. We should not be taking away work from these consultants and trainers by offering free provision. Venues do not expect free training and support to be available to fulfil other aspects of their legal responsibilities.
- As a society, we do not believe that it is the duty of Black and Minority Ethnic groups to challenge white people’s racism. Instead, we believe that people should take responsibility for their own racism and for changing this, and that it is society’s responsibility as a whole to create the conditions where this can happen. In the same way, it is not the duty of disabled people to challenge non-disabled people’s disabilism.
- What we can do to improve mainstream provision is to ensure that our own courses, productions etc are models of best practice. This provides an example to the mainstream of what they should be doing, and increases their understanding of access provision as something that enhances the training or performance experience for everyone instead of detracting from it. Models of best practice are essential for improving mainstream provision, but it would be very difficult to create these outside of Disability Arts courses, performances and productions, as they are still the only ones that are controlled by disabled people.
- We should also focus any efforts to work alongside mainstream venues on commercial venues who do not receive any public subsidy themselves, and whose productions also do not receive any subsidy. And we should make efforts to promote disabled artists central to this, with any subsidy being used solely to benefit artists. Paying for advice makes venues and companies take disability access issues much more seriously than they would otherwise.
The issue that seems to be left out of the debate altogether is the lack of opportunities for disabled artists within the mainstream, and the lack of representation of disabled people’s lives. Disabled people are not cast in ‘ordinary’ roles, despite the fact that in reality we are just ordinary people. Where our lives are represented, they are usually stereotyped, showing us as ‘tragic but brave’, or as a burden to non-disabled people, or as child-like and dependent, or as untrustworthy and/or as having our characters warped by our impairments.
As a result of the lack of representation of our lives within the mainstream, roles for disabled actors and performers are still few and far between. This leaves many talented, highly trained disabled artists without work, especially as non-disabled actors are often employed to play disabled people where roles do exist. Deaf actors are also finding that non-BSL users are being cast as BSL users when deaf actors are used, rather than casting BSL users themselves. This makes the BSL content unintelligible to its own language community, as well as misrepresenting BSL as being clumsy and basic rather than the fluent, sophisticated and complex language that is really is.
This means that accurate representations of disabled people’s lives, including disabled people portraying ‘ordinary’ characters, are still mostly confined to Disability Arts. Most work opportunities for Disabled artists are also confined to the Disability Arts world. Since the arts reflect society as a whole, it will take a very long time to change this, particularly as the Government does not even aim to achieve disability equality until 2025. And as Disability Arts is an important means of achieving disability equality, the Government’s aim will fail if the movement decides to give up now.
What is the relationship between Disability Arts and disabled people without a ‘disabled identity’?
Inevitably, questions arise about the relationship between Disability Arts, the disability rights movement, and people with an impairment who don’t self-identify as being disabled. These questions are the same whether someone has a sensory or mobility impairment, and/or a mental health problem, and/or a learning difficulty, and/or a long-term health or medical condition. Can and does the disability rights movement, and therefore the Disability Arts movement, speak for this group? Or is it better if non-disabled people – since the vast majority of people in positions of power are non-disabled – judge what is in the best interests of these disabled people without a ‘disabled identity’?
Why don’t many – or indeed most – disabled people identify as being disabled?
The most obvious answer is that the overwhelming majority of disabled people think of ourselves as being perfectly normal, and not as being defective or deficient in any way. We do not recognise ourselves in the charitable and medicalised images of disabled people as objects of pity and recipients of charity, nor as being in-valid and incap-able. We know that our situations are as normal as anybody else’s, and that in every way which matters our lives are totally normal too. We do not define ourselves by our areas of weakness any more than anyone else does; we define ourselves mainly by our strengths. And we do not define ourselves by our medical labels, but by our personalities.
So there are very few disabled people indeed who identify with the cultural stereotypes of disabled people that are still so prevalent today. For the disability rights movement, and thus for the Disability Arts movement, a strong identity as a disabled person comes instead from recognition of the discrimination and prejudice that we face. We use the Social Model of Disability, which shows that what disables us is society’s failure to recognise us as being normal and the barriers that society consequently places in our way.
To give the most simple example, throughout most of the twentieth century, Western society consistently failed to recognise that it is normal to have a mobility impairment and to use a wheelchair, and therefore buildings were designed with stairs but not ramps and lifts. Using the Medical or Charity Models of Disability, what disables people who are then unable to use these buildings is our impairments, our abnormalities. But using the Social Model of Disability, we understand that instead what disables us is society’s failure to recognise our mobility needs as being normal, and the consequent failure to install ramps and lifts.
The realisation that what disables us is not our own inadequacies, but society’s inadequacies, is a very liberating experience for most disabled people. We can regain pride in ourselves and in our continuing ability to survive in a disabling world, and celebrate this. And Disability Art is one of the main vehicles by which the Social Model of Disability, and this feeling of pride and renewed self-respect and self-esteem, is communicated to other disabled people. However, awareness of the Social Model of Disability is still very low, despite both local and national government policy supposedly now being based on it. For many disabled people, then, identifying as disabled is still about identifying as being defective, invalid and incapable.
Unfortunately, local and national government systems reinforce this overwhelmingly negative view of ourselves, via what the disability rights movement has called the Administrative Model of Disability. Here, the impact of our medical and health conditions on our ability to lead ‘normal’ lives is examined in minute detail, in order to judge the minimum level of benefits and services that we need to survive. Our personalities and our strengths are irrelevant to this assessment process; all that matters is how ‘abnormal’ our lives are and how ‘incapable’ we ourselves are. Unsurprisingly, in this context a disabled identity is not a source of Pride, but of shame. There is nothing to celebrate here, and disability is something that is only revealed when absolutely necessary in order to survive.
Many disabled people do not come into contact with the benefits and social services systems initially, so are protected from experiencing this overwhelming negativity until later in our lives. But most of us will experience it at some point, because disability impacts dramatically on our incomes. For example, around a fifth of the UK’s population are considered to be disabled using the Government’s definition of a long-term condition that prevents us from leading entirely ‘normal’ lives. Of those disabled people of working age, more than half are unemployed, and many of the rest are on low incomes. Many employers state quite openly that they would not consider employing a disabled person, even though it is illegal to discriminate against us – and so of course many disabled people are forced to try to hide our impairments; identifying as disabled is to invite discrimination. Meanwhile disability often results in much higher living costs, as well as the need for support in independent living.
Only people who become disabled in old age are generally able to avoid the state system altogether before they retire – at which point they are often refused help and told to spend their savings instead. However, before coming into contact with the benefits and social services systems and therefore being officially labelled, many disabled people do not think of themselves as being disabled, even if they are receiving considerable amounts of support at home from partners or other family members. Instead they think of themselves as people with a medical label that nonetheless does not define them in any way – which, of course, the disability rights movement would fundamentally agree with.
Many disabled people, too, do not believe that they are discriminated against. If they can see that other disabled people face discrimination and prejudice, this simply reinforces their belief that they are not disabled themselves. It may be, of course, that they do face discrimination regularly, but fail to recognise this. This is often, of course, because they have accepted the Medical Model of Disability, and think that it is their failure to be entirely ‘normal’ which is the cause of their exclusion rather than artificial social barriers. Or they think of themselves as being old(er), and of impairment, and therefore social exclusion, as being an inevitable consequence of ageing rather than social exclusion as something that can be challenged and changed.
Increasingly, too, in the case of young disabled people, it is only when they leave the educational system that discrimination begins to impact on them – while many young disabled people still receive a highly inferior and medicalised education, others receive an education that is equal to their peers. Only when they have difficulties that their non-disabled peers do not face – for example, in obtaining housing and employment – are they likely to feel the impact of disability. And without exposure to the Social Model of Disability, they are then still likely to think of disability as meaning that they have personal negative characteristics, rather than of disabiliy as being something that is external to them.
Even when disabled people do recognise that we are being discriminated against, we may not wish to dwell on this. Instead, we may view discrimination as being just one negative factor in our lives – as of course we probably view impairment – and consider that everyone faces negativity in their lives whether they are disabled or not. This, of course, is perfectly true, and disabled activists may broadly agree with this as well. What characterises disabled activists is not our determination to characterise ourselves by the discrimination that we face – our wish ‘to play the victim’ – but our desire to change the world for the better, and our focus on disability rather than, for example, the environment (although, of course, we can also focus on both).
In what sense are disabled people who do not identify as being disabled actually disabled at all, then?
- We may need parking to be provided and reserved for us close to a venue, because we cannot walk very far and cannot access public transport.
- We may need box office staff to check that their microphones and ‘T’ switches are working on a regular basis, and to remember to switch them on daily.
- We may need seating to be provided in foyers and auditoriums in order to be able to access a performance, because we cannot stand for long, and to have a step-free route to those seats.
- We may need to use a table in order to eat and drink, because we are unable to hold our plates and glasses, and/or to have a straw supplied with our drink.
- We may only be able to hear speech if sound is amplified, so that we can tune our hearing aids into it.
- We may need good lighting to be provided on performers/speakers/tutors, either to help us to understand them by seeing their lips and facial expressions, and/or in order to be able to see them at all.
- We may need good acoustics and for background noise to be kept to a minimum, and be unable to hear when there is loud air conditioning or open windows and doors.
- We may need event organisers to stick strictly to their schedules, so that we can take our medication and eat on time, and/or plan our time to include enough rest to see the event through to the end, and/or can leave when our transport is booked without missing the finale.
- We may need regular breaks in rehearsals, and for directors to stick strictly to rehearsal schedules, for the same reasons.
- We may need to sit near the front in order to see or hear clearly.
- We may be made ill if flashing lights or flash photography are used, because we have epilepsy, or hyper-startle response, or our eyes react slowly to light changes.
- We may need information including programmes, catalogues and scripts to be provided electronically in text or Word formats, or in Braille, or on tape, or in easy words and pictures.
- We may need signage to be large, and/or to be accompanied by images so that we do not have to be able to read English well.
- We may need text to be laid out clearly, and/or to be printed on matte paper, and/or to be set in a minimum of 12 or 18 point.
- We may have British Sign Language (BSL) as our first language, and need interpreters to be provided in order for those who cannot use BSL to be able to communicate with us.
- We may need grab rails in the toilets in order to be able to use them safely, or a toilet that is large enough to enable wheelchair access, or a safe and hygenic place in a toilet with adequate lighting to change bags or dressings or to administer injections or take medication. And then we will also need staff to check these regularly to ensure that accessible toilets are kept up to standard, that they are not used for storage, and that alarm systems work.
- We may need arts workers to ensure that, where accessible toilet and/or lift provision is limited, they are not used by non-disabled people because this makes things unreasonably difficult for us.
- We may need tutors and directors to feed us lines, rather than expecting us to be able to see a script.
- We may need assistance to be able to hang work, or to move around backstage.
- We may need cues to be visual rather than aural.
- Overall, we may find the ‘standard’ way of doing something unreasonably difficult, and need to have things done in a different way.
And we all need arts workers to recognise that it is as ‘normal’ for us to have these access needs as not, and to ensure that all of their activities meet as wide a range of access needs as possible as part of an inclusive, standard way of doing things, rather than seeing disability access as an optional, add-on extra. All of this applies whether disabled people identify as being disabled or not.
NB: As you can see, organising arts activities in such a way as to meet a wide range of access needs does not require rocket science, and often has zero or very low cost implications. It does, however, require arts workers to remember that the world includes disabled people, along with common sense.
What else does this mean for the arts world?
First, it is important to realise that most disabled people do not ‘look’ disabled, although around one in five of us will be. Even those disabled people who are categorised as being ‘visibly’ disabled are simply being identified by our visible disability aids – without these aids, we do not ‘look’ disabled either. It is impossible to judge whether or not someone is disabled by appearance. For example, most people with visual impairments do not use canes or Guide Dogs or even wear glasses, and their eyes appear to be ‘normal’, while people who are neuro-diverse or have stress-related or other mental health impairments do not look ‘mad’, and many people with mobility impairments do not use sticks or wheelchairs. The only way of knowing if someone has a particular access need is if they disclose it to you. (NB: you should never ask, let alone expect to be told, the nature of someone’s impairment.)
Nor are most disabled people ‘registered’ with any authority as being disabled – in fact, the disabled persons register itself was abolished more than a decade ago. (The register was introduced after the Second World War, along with a quota system for employers, in order to protect the employment rights of returning war veterans. Employers had to employ a minimum percentage of registered disabled people within their workforces. This system was later abolished, and has since been superceded by the Disability Discrimination Act.) Only a minority of disabled people have any documentation to ‘prove’ our identity: this might include a Disabled Persons Railcard, or a Blue Badge parking permit, or benefits documentation relating to Incapacity Benefit or Disability Living Allowance, or a card to state that we are registered with our local social services department to receive services. The majority of disabled people, however, will not have any documentation to prove our status at all.
Organisational disability equality policies therefore need to recognise that disabled people are unlikely either to ‘look’ disabled or to have documentation ‘proving’ that we are, but we will still have a wide range of access needs as well as incomes that have been reduced by disability. And if arts organisations instead expect disabled people to argue for our in-valid status to be granted, often in public, they will never attract anything like a representative proportion of disabled people to their activities. Yes, some disabled people may prefer to pass as non-disabled in these circumstances in order to attend without being humiliated, whether or not this impacts on our ability to participate, but we may equally prefer to stay away from arts activities altogether. It is far better to allow a few fraudsters to slip through than to make the price of participation in the arts too high for most disabled people to wish to pay, whether financially or in other ways.
As an extension of this, arts organisations need to remember that many disabled people will not feel comfortable asking for ‘reasonable adjustments’ to be made for us. After all, this requires disabled people to identify as being disabled in public, when most still see this as being an overwhelmingly negative identity. And because of the prejudice and discrimination that identifiably disabled people face, many disabled people will not even have disclosed their impairments to the people around them, including family members. They will not wish, then, to participate in the arts at all if the price to be paid is public exposure. Most disabled people attending arts activities will continue to be ‘invisible’. Instead, arts organisations need to remember to implement best practice at all times in order to ensure that their activities are accessible to disabled people.
To give another simple example, it is best practice at public events to use microphones, so that those who are hard of hearing can hear what is being said. (NB: hearing aids can be tuned to pick up amplified sound; having a loud voice or holding an event in a small room is not an adequate substitute for amplification!) Often, though, even when a p.a. system has been provided, an event begins with the organisers asking if anyone wants them to use the microphone, with the implication being that they would rather not. Someone with a proud disabled identity, i.e. a disabled activist, may well state that yes, they do – but their enjoyment of the event will have been blighted by the need to do so, and they may not return again. Meanwhile the vast majority of hard-of-hearing people would not dream of identifying themselves in public, so instead they sit through the event being excluded from hearing the majority of it. Again, they may well not return, perhaps stating that the arts ‘are not for them’. Best practice needs to be followed without requiring those who will benefit from it to identify themselves.
In this example, too, it is easy to see that yes, the disability rights movement, and therefore the Disability Arts movement, can speak for disabled people who do not identify as being disabled. Hearing loss is very common, but most people with hearing loss do not think of themselves as being disabled, nor do they wish to advertise the fact. But their personal communication strategies can only work effectively if best practice is followed; their access needs are exactly the same as someone who does identify publicly and proudly as being disabled. (In addition to using microphones, this also means having good lighting on speakers – being able to see people speak improves comprehension, since we all lip-read to some extent – not turning backs on the audience while speaking; only letting one person speak at at time; and having a roving microphone for audience participation.) The failure to complain does not mean that an activity is accessible; it is more likely to mean that someone’s anger and distress about being excluded has been turned inwards against themselves.
This example also underlines that it is important to remember disabled people need to be supported and encouraged to raise access issues, rather than our being treated as being trouble-makers or as having chips on our shoulders when we point out that best practice is not being adhered to. Speaking out can be isolating, distressing and frustrating, and inevitably spoils the enjoyment of the activity concerned. It is much easier to stay away – but again, arts organisations will never attract a representative proportion of disabled people to participate if this happens. And it is unrealistic to expect disabled people who are suffering the emotional impact of exclusion – and often the physical impact too – to raise issues ‘nicely’, and for arts workers to decide to deal only with those who are ‘pleasant’ in the way that we complain. It is inevitable that only those non-disabled people who are not affected personally by discrimination will be completely accommodating in the way that they raise access issues – but at the same time, their lack of personal experience will inevitably mean that they do this less well than disabled people ourselves will.
Disabled artists also need much more support from arts organisations than we are currently receiving, whether these organisations are part of the ‘mainstream’ or not. As I have discussed in my other essays, making work as a disabled artist can in itself challenge the status quo however far removed the subject of the work is from revolution, and that can be very frightening. Likewise, while many disabled people eventually find a new strong disabled identity as a result of exposure to Disability Art, their initial contact with it can be threatening; disabled artists will not always receive support from our audiences. Non-disabled people can also find Disability Art personally liberating, but may react in the first instance with anger and aggression; this can be hard for disabled artists to deal with. And in addition to the other disadvantages that disabled artists face, we often have to challenge the status quo within arts organisations and raise issues around best practice in order to make work at all. Unsurprisingly, it can become too difficult to continue to try to participate at all in the mainstream, whether this is attending training, or performing or exhibiting in mainstream venues, or working alongside non-disabled people. And without adequate support, it can become too difficult to continue to practice as an artist at all.
Sadly, of course, many arts workers do believe that it is too much trouble to involve disabled people, whether as audience members or in performance, exhibition or production roles, and are happy for the exclusion of disabled people to continue. Others have accepted the Medical and Charity Models of Disabiliy, and believe that disabled people should be grateful to be included at all, given our in-valid status, and that we have no right to complain about any deficiencies. Or they believe that their ‘core’ market – i.e. non-disabled people – will be put off by the presence and inclusion of disabled people at the heart of their activities. It is attractive for them to believe that the disability rights and Disability Arts movements do not represent the majority of disabled people, because only these activists are challenging the status quo of exclusion.
However, when feedback on access deficiencies and ways to rectify these is not encouraged and supported, only activists will have the confidence to be able to raise these issues, and only activists will have enough belief in our entitlement to be seen as ‘normal’ to insist that we are entitled to equal treatment. And in any event, only activists, who see ourselves as part of a movement and therefore have spent a great deal of time thinking about the issues, exchanging information and developing ideas and expertise, will be able to provide the knowledge that will be necessary to achieve best practice and thus real change. Dismissing the disability rights movement, and thus the Disability Arts movement, as being unrepresentative of the majority of disabled people is a much more comfortable option for any organisation than engaging with disabled activists on our own terms. But it will never be possible to achieve disability equality without accepting that, in an imperfect world, disabled activists are the best experts that we have. And it is also important to recognise that, given the vast majority of us will become disabled at some point before we die, disabled activists and the Disability Arts movement are trying to speak for – and to – us all.