“People do not ‘have’ diseases, which are really descriptive mechanisms created by contemporary medicine. People have stories, and the stories are narratives of their lives, their relationships, and the way they experience an illness.” Arthur Kleinman, The Illness Narratives
This is another article that echoes some of the same ideas that Davis put forward, in particular of how Galton took Quetelet’s idea of the normal man and adapted it so that average came to represent mediocrity, and the upper quartile of the distribution curve represented progress and perfection, thus eliminating abnormality. In fact, the appropriation of the law of error to explain stability in social statistics has never been called into question:
Galton’s imposition of his own values concerning human development onto the bell curve has also been globally accepted. Thus the discourse of statistics has not only produced concepts of ‘normal’, ‘abnormal’ and categories such as ‘the deviant’, ‘the intelligent’ and ‘the disabled’, but also helped to construct the notions of ‘success’, ‘competence’, ‘excellence’, ‘ability’ and ‘merit’. Of course, these notions only have meaning in contexts when certain skills or attributes have more value than others. As such, all competence can be viewed as fabrication.
This simplified diagram shows how Galton divided up British society at the time. Of course, the ‘undesirables’ would have included disabled people (I discuss Galton’s ideas later).
The diagrams below show how Galton’s system was used to develop the IQ measurement of intellectual ability, and how this in turn can be used to create or enforce stereotypes of (in this case racial) difference:
It is vitally important in any discussion of disability to recognise the fact that ‘normalcy’ is a societal construction, based on these statistical systems and enforced by Gramsci’s cultural hegemony. In capitalist economies, where values are based on production/consumption ratios, the deviant sectors of the population would by definition include those with lower levels of production efficiency and a correspondingly decreased ability to consume.
“Norms do not exist on their own terms, but only as products of a monitoring knowledge system. [Without norms] the knowledge of any one individual can be neither evaluated nor ranked, and thus cannot be applied . . . as rewards or sanctions” (John Fiske, Power Plays Power Works, p 74). This system of punishment and reward is a bid to ‘normalise’ the deviant portions of society, and as such set down and control ideas of behaviour, performance and body configuration. Some feminist discourse deals with this enforcement of (male) ideas of beauty onto the female, viewing it as a necessity to conform as some kind of bondage or subjugation (e.g. Martha Rosler’s Vital Statistics of a Citizen, Simply Obtained). However, as the feminists have learned, it is much harder to change society and the systems that control it than to submit to the intervention of ‘experts’ who work to normalise the nonstandard as well as those who support their ideas.
On the question of how and whether one is disabled or enabled by a society, Shogan mentions Martha’s Vineyard as an example of a community which managed to eradicate disability, even though many of its members suffered from hereditary hearing impairments. The difference in Martha’s Vineyard was the fact that almost everybody in the community used sign language to communicate, whether or not they suffered from any physical impairment (there is even anecdotal testimony which claims that people would communicate in sign even when no deaf persons were present!). As such, the category of ‘disabled’ was eliminated, and discourse was able to focus on the abilities of individuals in their particular social context. This has everything to do with attitudes and the willingness of the community to engage with the physically impaired rather than segregating them. This example makes clear the distinction between ‘disability’ and ‘impairment’ that is central to constructionist discourse (impairment only becomes disability when it is socially constructed as such).
From the UN World Programme of Action Concerning Disabled Persons:
“Handicap is therefore a function of the relationship between disabled persons and their environment. It occurs when they encounter cultural, physical or social barriers which prevent their access to the various systems of society that are available to other citizens. Thus, handicap is the loss or-limitation of opportunities to take part in the life of the community on an equal level with others.” The arbitrariness of this is pointed out by the fact that society determines what those standards of normality are, and factors such as social expectations, technology and its availability, education system, architecture and the pace of life all affect the point at which variation from the norm becomes a disability. As such, the more a society engages in equalisation of opportunities and access, the greater the reduction in numbers of disabled persons.
The UN document also states: “The principle of equal rights for the disabled and non-disabled implies that the needs of each and every individual are of equal importance, that these needs must be made the basis for the planning of societies, and that all resources must be employed in such a way as to ensure, for every individual, equal opportunity for participation. Disability policies should ensure the access of the disabled to all community services.” The words sound nice, but it is difficult to see how such disability policies can be put into practice in countries that have lower GDP, distribution of wealth and HDIs.
The UN document also calls on disabled persons themselves to mobilise: “As disabled persons have equal rights, they also have equal obligations. It is their duty to take part in the building of society. Societies must raise the level of expectation as far as disabled persons are concerned, and in so doing mobilize their full resources for social change. This means, among other things, that young disabled persons should be provided with career and vocational opportunities – not early retirement pensions or public assistance.” This presumably would put less of a drain on the welfare state, but also help towards changing attitudes if the disabled are seen as ‘pulling their own weight’, or at least contributing.
“Persons with disabilities should be expected to fulfil their role in society and meet their obligations as adults. The image of disabled persons depends on social attitudes based on different factors that may be the greatest barrier to participation and equality. We see the disability, shown by the white caner crutches, hearing aids and wheelchairs, but not the person. What is required is to focus on the ability, not on the disability of disabled persons.” This is true, but quite an idealistic statement, not all that easy to put into practice. It is also something that I wish to show through my work on this project.