Time to get equal OTN August 2004 12(8)
As part of its 'Time to get equal' campaign, Scope hosted a successful ‘disablism’ summit last month, in association with Disability Awareness in Action, the independent think tank Demos and supported by Channel 4 television. Tracey Samuels and Michelle Crouch look at some of the issues raised.
A new word appears to be slowly seeping into the public conscience, and while not yet found in the dictionary, it is being legitimately used to describe prejudice of all forms against people with disability. The disability organisation Scope, which focuses on cerebral palsy, defines ‘disablism' as being ‘discriminatory, oppressive or abusive behaviour arising from the belief that disabled people are inferior to others'.
At an event held at Channel 4 television in London last month, Tony Manwaring, chief executive of Scope, said of disablism: ‘Let us name it and define it, and then we can start to tackle it and beat it back.' A new report, Disablism: how to tackle the last prejudice, published by Demos as part of Scope's ‘Time to get equal' campaign, argues that disabled people in the UK lead lives that are blighted by poverty and exclusion and are far less likely to achieve their potential than non-disabled people.
The report also maintains that the current legislation-dominated approach to affecting change is only a start on the road to eradicating inequality and disablism. According to Rachel Hurst, director of Disability Awareness in Action, people need to start discussing disablism as it really is. Speaking at the summit, she said, ‘we in the UK movement have been using this term for a very long time'. She told the audience that ‘at long last we are now being heard'. Ms Hurst said that she had long held a dream. ‘I want to wake up one morning, turn on the breakfast news and hear that the government has announced that it is against institutional disablism.'
Occupational therapists as a rule aim not to label people, whether clients or otherwise, yet unfortunately, without the label ‘disabled' many grants and support services are simply not available to people. However, as Ms Hurst told the summit audience, putting disabled people into boxes labelled ‘special this' and ‘special that', is discrimination in itself.
The recently launched COT disability forum has been holding some discussion on the COT website on the nature of disability. The Disability Discrimination Act (1995) definition – a physical or mental impairment which has a substantial and long-term adverse effect on his [sic] ability to carry out normal day-to-day activities – may be one that is useful for legal purposes, but it uses sexist language and suggests that there is such a thing as a ‘normal' activity.
The disability movement has long been fighting to challenge such presumptions. The international classification of functioning (ICF 2001) defines disability as the outcome of the interaction between a person with impairment and the environmental and attitudinal barriers he/she may face. This follows the social model of disability and suggests that disability is a product of the environment, as opposed to describing disability in terms of the person having a problem.
Disablism: how to tackle the last prejudice, is explicitly clear on the importance of language to this equality agenda. The report uses the terms ‘disability' and ‘impairment' quite separately, pointing out that ‘disability' describes how society responds to people with impairments; it is not a description of a personal characteristic.
Also speaking at Scope's disablism summit, Andrew Smith MP, secretary of state for work and pensions, told the audience that breaking down barriers, physical and attitudinal, is close to his heart. ‘A society without "isms" can only be a better society,' he said. Calling for a step change in public attitudes, Mr Smith said that often discrimination can be indirect and sometimes unintended. ‘By 2020,' he said, ‘I hope that in one sense this will be less of an issue because full life chances and integration for disabled people will be taken for granted.'
Patient choice, personalised care and support services, direct payments and assessment, were all passionately talked about during the summit's first panel discussion, and the seven participants threw up some interesting ideas for the audience to discuss (see page 4). The panel concluded that there is a lack of consensus as to what personalised services mean, that the only personalised services worth having are truly designed and owned by the service user, and that users need to establish real ‘rights' before they can affect real choice.
Moving on, the second panel discussion of the day looked at the issues around inclusive design. Again, this focused on putting the user at ‘the beginning, middle and end of the whole design process', as Sue Hewer, head of design at the Royal College of Arts stressed.
Steve Manix, chief executive of Shape Arts, told the audience that disabled people should be contractually in control, not just a ‘side group'. This was greeted with enthusiasm from some members of the audience who raised the issue of disabled people being paid as consultants for the advice that they give on projects, rather than be expected to provide their skills, knowledge and experience for free.
The disablism report has this concept at its heart and puts forward the concept of ‘trading zones' – new models of collaborative participation between existing institutions. Such zones are places where disabled people can communicate with non-disabled people on an equal basis about things that are important to people's lives in an effort to ‘trade' resources, skills and experiences, and find the answers to questions.
Within the occupational therapy profession, there are many more people with disabilities than it may appear at first sight. While in a national survey undertaken by the COT last year, 2.17 percent of OT students registered a disability (COT 2003), in a recent local study 18 percent of one first year university cohort stated having a disability.
A hidden disability is defined as one that ‘cannot easily be seen, measured or objectified' (Fitzgerald and Paterson 1995), for example people with chronic fatigue syndrome, depression or hearing impairments. A disabled person whose impairment is hidden faces a choice about whether or not to talk about their disability. This in itself is a dilemma that is not faced by those with more visible impairment.
It is hoped that those who do talk about impairments, are greeted by acceptance and that any necessary adaptations required are made to their environment (Davies 2004). However, the experience of disclosure is unfortunately not always positive. Nanthini Sivanesan, chair of the COT's disability forum, has spoken of her experience of disclosing her visual impairment: ‘I have thought that some colleagues doubt my capability for carrying out my duties. But using my will power and determination, I have showed them otherwise and shown them not to judge me because of my disability.'
It may be that doubts as to the ability of disabled people to successfully fulfil their responsibilities points to an underlying attitude that if disabled people reveal their illness or disability identity, they must assume a social devalued self identity, ie that of sick and disabled (Fitzgerald and Paterson 1995).
The dilemma about whether or not to disclose impairment is one that is not going to disappear while attitudes and beliefs about the ability of colleagues who are not within perceived ‘norms' persist.
Occupational therapists have the opportunity now to challenge the stereotypes, not just towards clients, but also towards colleagues, so that a more diverse profession can be promoted. As Ms Hurst told the disablism summit audience, ‘let's all recognise our own disablism and let's all join together and struggle to eliminate it.'
References
College of Occupational Therapists (2003) Ten-year review of occupational therapy student numbers in the UK. London: COT.
Davies Y (2204) ‘To tell or not to tell'. OTN 12(7) 25.
Fitzgerald H, Paterson K (1995) ‘The hidden disability dilemma for the preservation of self'. Journal of Occupational Science: Australia, 2 (1) 13-21.
Miller P, Parker S, Gillinson S (2004) Disablism: how to tackle the last prejudice. Demos 2004.
World Health Organisation (2001) International classification of functioning, disability and health. Geneva: WHO.
Tracey Samuels is editor of Occupational Therapy News and Michelle Crouch is COT regional manager – UK.
