Wolbring , G. (2003) The Right to be Different for the conference Differenz anerkennen Ethik und Behinderung – ein Perspektivenwechsel Internationale Tagung 5. - 6. Dezember 2003 In der Katholischen Akademie in Berlin
http://www.differenz-anerkennen.de
It is an argument used to defend the right to be born independent of the intrinsic genetic or non-genetic composition of the developing human being. It is a direct rebuttal of eugenic policies, which try to normalize the genetic and non-genetic compositions of born and developing human beings
It is an argument used to demand the right of human beings to be supported and treated with respect independent of their non normative genetic and non-genetic compositions manifesting themselves in perceived ‘sub-normal’ set of abilities. It is a direct rebuttal of societal policies, which demand that ‘disabled people’ fix themselves to the norm if a medical/technological fix exist. [1] .
And it is an argument used to demand the rights of human beings to be supported and treated with respect independent of their non normative genetic and non-genetic compositions manifesting themselves in enhanced, new set of abilities not existing in ‘normal’ human being.
However the argument of the ‘Right to be Different” does not define the nature of disabilities and disabled people. Different models exist, which try to define disabled people, their intrinsic non-normative characteristics, and their interaction with the environment.
Different models lead to different self-perceptions of disabled people, different perceptions of disabled people, different interpretation of the relationship between disabled people non-disabled people and the environment, different definitions of the problems, and different solutions.
Should disabled people see themselves/should they be seen by others as the patient type of a disabled people with a technological/medical problem in need of fixing? Should they see themselves as persons (or persons to be) with an inherent problem that leads to a low quality of life for the person and his or her relatives? Should they see medical care and rehabilitation (back to the norm treatment) as the primary venue for increasing their quality of life? Within the ‘medical model of disability’ management of the ‘disability’ is aimed at cure, prevention, or adaptation of the person (e.g. by provision of normative assistive devices). At the societal/political level, the principal response is the support for the development of ANY new technology offering a medical/technological fix towards the norm.
Or should they see themselves/should they be seen by others as the transhumanist type of a disabled person, who sees their own body as well as the ‘normal’ human body as a defect in need of not just fixing to the norm but in need of augmentations above the norm with the addition of new abilities. The ‘transhumanist model of disability’ does not see the ‘disabled persons body’ as subnormal. It rather sees the human body in general as deficient as something in need of improvement. Therefore it believes in improving any human body if possible whether it’s one of disabled people or that of the so-called non-disabled. In this model in essence everyone is disabled (mM), everyone has defects in need of fixing. At the societal/political level, the principal response is the support for the development of ANY new technology offering the improvement of the human body and the norm.
Or could they see themselves/could they be seen by others as the social justice type of a disabled person following the social model of disability, which sees disability mainly as a socially created problem and principally as a matter of the full integration of individuals into society? Disability is not seen as an attribute of an individual, but rather a complex collection of conditions, many of which are created by the environment – particularly the social environment and socially mediated aspects of the physical environment. Hence, the management of the problem requires social action, and it is the collective responsibility of society at large to make the environmental modifications necessary for the full participation of people with disabilities in all areas of social life. The issue is therefore an attitudinal or ideological one requiring social change, which at the political level becomes a question of human rights, to be seen in the same way as issues of gender and sexual orientation. In essence, able-ism [2] is comparable to racism, sexism, age-ism, homophobia, etc. The social model of disability does not negate that a disabled person has a certain biological reality (like having no legs), which makes her/him different in her/his abilities, which make her/him not fit the norm. But it views the ‘need to fit a norm’ as the disability and questions whether many deviations from the norm need a medical solution (adherence to the norm) or a social solution (change/elimination of norm) [3] . Indeed many so called diseases defects impairments are not associated with acute medical failures but are more or less a societal construction [4] . The social model of disability also does not negate the existence of symptomatic acute medical problems which should be treated but in the same way as a ‘non disabled’ who is ill with a flu and who is treated for this acute illness with medicine is not defined as a disease, a ‘disabled’ can have acute medical periods without being solely seen as a disease. However the social model questions the inflation of defining anything we do not want to accept/respect and support as a disease or impairment and it questions whether fixing of the person is the most appropriate and effective way of action.
This workshop will look at the implications of the different disability models and the argument of the “Right to be Different”
[1] Sutton v United States, 1998 At Issue: Whether nearsightedness that can be corrected with glasses or contact lenses is a "disability" under the Americans With Disabilities Act.
Decision: The court ruled that the Americans With Disabilities Act does not cover people whose disabilities can be sufficiently corrected with medicine, eyeglasses or other measures.
<http://www.washingtonpost.com/wp-srv/national/longterm/supcourt/1998- 99/sutton.htm> full text SUTTON et al. v. UNITED AIR LINES, INC.
certiorari to the united states court of appeals for the tenth circuit
No. 97-1943. Argued April 28, 1999--Decided June 22, 1999
<http://caselaw.lp.findlaw.com/cgi-bin/getcase.pl?court=US&vol=000&invol=97-1943>, Murphy v. United Parcel Service At Issue: Whether medication or other mitigating measures should be considered in assessing if an individual is "disabled" under the terms of the Americans With Disabilities Act. Decision: The justices ruled that the condition the petitioner suffers and controls with medication is not considered "disabling" under the Americans With Disabilities Act. The condition and medication preclude him from performing only a particular job and do not substantially limit him in employment.
<http://www.washingtonpost.com/wp-srv/national/longterm/supcourt/1998-99/murphy.htm> MURPHY v. UNITED PARCEL SERVICE, INC.
certiorari to the united states court of appeals for the tenth circuit
No. 97-1992. Argued April 27, 1999--Decided June 22, 1999
<http://caselaw.lp.findlaw.com/cgi-bin/getcase.pl?court=US&vol=000&invol=97-1992>, Albertson's v. Kirkingburg At Issue: Whether a truck driver blind in one eye who received a waiver from Department of Transportation vision standards is disabled for the purposes of the Americans With Disabilities Act. Decision: The justices voted unanimously that the plaintiff in this case was not protected by the Americans With Disabilities Act. They ruled that employers who set job qualifications based on federal safety standards do not have to overlook those standards when a worker obtains a waiver from the federal agency. <http://www.washingtonpost.com/wp-srv/national/longterm/supcourt/1998-99/albertsons.htm> ALBERTSONS, INC. v. KIRKINGBURG
certiorari to the united states court of appeals for the ninth circuit
No. 98-591. Argued April 28, 1999--Decided June 22, 1999 <http://caselaw.lp.findlaw.com/cgi-bin/getcase.pl?court=US&vol=000&invol=98-591>
[2] Ableism: a network of beliefs, processes and practices that produce a particular kind of self and body (the corporeal standard) that is projected as the perfect, species-typical and therefore essential and fully human. Disability then, is a diminished state of being human
Fiona A.K. Campbell (2001) Inciting Legal Fictions: Disability Date with Ontology and the Ableist Body of the Law, Griffith Law Review, Vol 2., <http://www.gu.edu.au/centre/glr/content2r.html#four>
[3] Beside the above described three models other models exist such as Bio-Medical, Economic, Liberal, Social-Political, the Minority Rights and the Universalist model [3]
Penney describes the Universalist model as follows [3] :
The model I present, in keeping with the Universalist position, holds that there are no intrinsic boundaries to who or what is disabled. This is a political question to be answered through a contextual analysis. Also consistent with the Universalist approach, the model eliminates categories and references to norms to anchor its conceptual framework. Instead, it lays out a guidelines for a fully unified and contextual approach to disability for the purposes of section 15(1): Disability is a limitation on participation resulting from an interaction between: (a) bio-physiological conditions including differences in psychological, physiological, and anatomical structure, range, and function; and (b) environmental and external conditions including historical, social, economic, political, and behavioural factors. It is important to clarify the meaning of “limitation on participation” in the new approach. Unlike “functional limitation”, this new term represents limitations on an individual’s full participation in a range of life activities as a result of his or her disabilities. Thus, any range of limitations on participation across a range of activities resulting from bio-physiological characteristics and environmental factors may constitute a disability for the purposes of section 15(1).
Jonathan Penney 2002 v1n1 Journal of Law and Equality of A Constitution for the Disabled or a Disabled Constitution? Toward a New Approach to Disability for the Purposes of Section 15(1) p83-94 http://www.jle.ca/files/v1n1/JLEv1n1art3.htm
[4] Wolbring 2003 The social construct of health and medicine in Health Ethics Today Vol 13 Number 1 page 5-6