Colour photograph of a white caravan from outside the wooden orchard gates, framed by trees, with a red brick tiled cottage behind it. If you look very carefully, you can see a Westie immediately behind the gate.


Holton Lee

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.

The image shows a male doll, dressed as a doctor, facing outward against a white background. Behind him are a child's medical kit and microscope. The text reads: I invent and administer tests to classify disabled people according to what I think are their impairments. Then I carry out experiments to try to make them more like me. If I fail, I try to identify and kill them before they are born.

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.

The image shows a fashion doll dressed in a skirt and blouse and red glasses, facing outward against a white background. Behind her are a child's computer toy and a doll's table on which rests pieces of paper and a plastic doll's pen. The text reads: I invent and administer tests to classify disabled people by what I think are their inabilities. Then I judge the minimum level of benefits and services that I think they need 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?

What characterises disabled people, whether we identify as such or not, is that we have access needs that vary to some extent from what is considered to be 'normal'. For example, within the arts world:
  • 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.

The image shows a fashion doll, dressed in a ballgown, facing outward against a white background. Behind her a group of fashion dolls dressed in party clothes are drinking and socialising. The text reads: I organise social events for non-disabled people. This raises money to create jobs for non-disabled people. Then we provide the disabled people whom we think are deserving with the things that we think they need.

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.

The image shows an Amazon action doll with no legs, using a wheelchair, facing outward. Behind her are photographs of disabled people campaigning for civil rights. The text reads: I fight against prejudice, discrimination and disabling environments. I fight for equal rights legislation and better health and social care provision. I also fight to eliminate the poverty, abuse, violence and war that cause the majority of impairments.

Images from Helping the Handicapped, Ju Gosling aka ju90, 2003, commissioned by the Sinnlos Festival, Graz, Austria, as part of the European Capital of Culture celebrations

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Dr Ju Gosling aka ju90's ABNORMAL: How Britain became body dysphoric and the key to a cure is available now for just 3.09 for the Kindle or in a limited-edition hardback with full-colour art plates for 20 inc UK postage and packing. Book cover