The place of experiential knowledge in disability research
The role of experiential knowledge has become a key methodological issue for the disability movement regarding how valid research on disability should be conducted and by whom it should be done (Barnes 1996; Branfield 1998; Oliver 1992; Oliver & Barnes 1997; Stone & Priestley 1996).
Experiential knowledge is an important aspect of social research which requires that attention be given to the notion of identity. This has been a concern for researchers for some time in relation to the question of how to produce valid knowledge (Collinson 1992; Parker 2000; Stanley & Wise 1983). In this context identity relates not only to the identities of both researcher and researched but also to the relationship between researchers and the topic of research.
One central aspect of writings on identity and research concerns the means of generating rapport between researchers and researched, as rapport can allow access to knowledge which researchers may otherwise not have access to. One means of promoting such a rapport is by matching some aspects of the identities of researchers and research subjects. For example, some have argued that the degree of trust and disclosure is increased in feminist research when researcher and researched are the same gender and that prescriptive methods for conducting such research are often inappropriate (Oakley 1981). However, others question ‘woman’ as a unitary category, arguing that identities are viewed as multiple, and can vary in relation to context, place and time, which includes the research process (Cotterill 1992; Edwards 1990).
Similar arguments appear within disability research with disabled people also differentiated by many demographic variables including: gender, class, ethnicity, sexuality, age and so forth (Duckett 1998; Humphrey 2000; Morris 1993; Shakespeare 1997; Vernon 1997). However, many supporters of the disability movement have generally elevated a homogeneous concept of ‘disabled’ as the defining feature of identity for disability research. For some the outcome of privileging experiential knowledge is to argue that only disabled people should conduct research on disability (Branfield 1998). Others take a more pragmatic line acknowledging the assistance available from non-disabled researchers whilst arguing that disabled people should be an integral component in all stages of the research process by altering the social and material relations of knowledge production in a new emancipatory disability research agenda (Barnes 1996; Oliver 1992; Oliver & Barnes 1997; Stone & Priestley 1997; Zarb 1997). These authors promote emancipation for disabled people through the adoption of concepts enshrined in the social model of disability. One implication of conducting emancipatory disability research in accordance with the social model is that once the social and material relations of knowledge production are altered to allow disabled people equal access to the research process they are then able to make an epistemological choice of research methods without recourse to any limitations imposed by impairment.
As a member of the research team defines himself as a blind person who is confronted by very specific disabling barriers, he is able to claim the necessary ‘cultural competence’ required to do disability research, and thus meet one criterion of the emancipatory disability research agenda. However, in his case, simply altering the social and material relations of knowledge production did not provide equal access to all the methodological prescriptions because some consequences specific to impairment affected the methods he was able to adopt to conduct this research. For example, the construction of graphical representations of audit compliance statistics.
An example of how the involvement of a disabled researcher affected the initial research design can be observed in the way the formulation of what constitutes disability inside ICT’s has been adopted by the research team. Many traditional methods of assigning group membership towards disabled people are achieved by considering classifications based on impairment definitions. In both the UK and USA, this practice is demonstrated in their relative pieces of anti discrimination legislation: the Disability Discrimination Act (DDA-UK) and the Americans with Disabilities Act (ADA-USA) respectively. Similarly and unsurprisingly perhaps, the International Classification of Impairments, Disabilities and Handicap, by the World Health Organisation adopts the same traditional understandings. This in turn raises the question of why, and what difference to ICT research is achieved by adopting alternative methodological approaches?
The most fundamental and wide ranging aspect is to be found by considering how disabled research stakeholders determined the site of disability. This is a critical factor in research, after all if the site of disability is a place of contention, then methods to remove disability also become problematic. Again, traditional understandings often regard disability as a functional aspect of impairment; ergo an impaired person is disabled. Again, this research has rejected this simplistic schemer. Instead, disability is not related to impairment, rather disability is defined in terms of computer users. In other words, the research rejects any notion of ‘computer users with disabilities’. This may appear a semantic point, but one we believe is core to readdressing concepts of eDiscrimination. There are no computer users with disabilities, because the term places the disability firmly as a function of the person. Rather, disability is rooted inside inaccessible ICT design. The theoretical implication of this construct moves the ‘problem’ of inaccessible design away from impaired computer users and firmly towards systems designers who create disability by not building ICTs for all by default. Another means of conceptualising the issue is to consider that the output from any computer is inaccessible without adaptive equipment. For most people, this adaptation is achieved through a visual display unit. By concentrating on this dominant access technology, design for alternative access methods including screen readers, text magnification, and non mouse use to name a few, has meant that such alternative means to gaining access have been regularly consigned to a secondary, specialist, non standard market. This returns us to the point that the linguistics of disability becomes important in understanding its construction. Because the concept of universal design has not been generally adopted in ICT circles, then the issue of disability is often regarded as specialist, outside the ‘norm’, and is resplendent with terms including ‘adaptive’ and ‘accessible’, which in reality mask the obvious point that initially design was discriminatory and not based on universal principals. Although this argument may appear academic and rooted in linguistics, our research has revealed other aspects of accessibility which may not have been considered by more traditional research methods.
One issue which often appeared and was considered as problematic for user testers was E Accessible material online. Consideration is required at the authorship level as well as in web design. For example, screen readers pronounce the phrase ‘AA’ as ‘aah’. A more accessible rendering of the term ‘AA’ would be ‘double A’. Clearly the issue of making the web accessible requires confronting on several levels. The principal focus of this research is web accessibility in relation to employment issues. Thus a significant aspect of the research is to determine the accessibility of employment related web sites. Hence a sample of over 100 employment related websites have been audited for the project to check compliance to accessibility guidelines. The results of this technical audit are given in section xxx. Once the audit was completed, this provides evidence of the degree of non compliance to accessibility guidelines. Yet in itself an audit does not determine whether or not websites were capable of being used by disabled computer users, something the research was designed to establish. However, before asking user testers to access any specified commercial website, it was decided that in the first instance a simple test webpage would be created on the project website to ensure user testers had basic skills which could complete simple tasks such as selecting options, entering data, reading specifications, copying and pasting, and submitting forms. Clearly the project required a fully accessible website where the competence of user testers could be judged.