Why We Fight
It will change ones perspective of who is truly in power very very fast.
This still makes me laugh every time I see it
Being a Political Science and Philosophy student a lot of the work I do revolve around the notion of group rights and what that means… which is a fascinating topic. Does being a part of a certain group give the individual certain rights? When can one truly claim to belong to a specific identity? How does a society tackle being tolerant against intolerant groups? In which way should society accommodate or reject requests from independent groups? And the list continues.
The following article is made from a paper I wrote that surveys the Nothing About Us Without Us Policy of the disabled community. The Paper explores what the consequences would be should the policy be interpreted narrowly opposed to the very liberal way its been generally used since its emergence in the 1990′s. What is interesting about the paper is that it shows how group rights can be a strong tool for empowerment if implemented in one way, but a tool for control if interpreted in another fashion. Overall I believe the question of who gets to say “what” about “Whom” and “how” is important because it forces both the subject and the publisher to rethink their position in the world and in relation to one another? Further does it ask can we truly understand the experience of someone else outside of our own subjective position?
“Nothing About Us Without Us”
A request for Inclusion Not Extremities
The Americans with Disabilities Act of 1990 was the product of a long struggle for civil rights that began in the early 1950s, continues into present-day society, and was inspired and supported by various civil rights groups. Although many of the causes that these groups fought for have been achieved, the issues surrounding the disabled community were not officially recognized until the approval of the Americans with Disabilities Act of 1990. The field of disability studies is still fairly young; many in the general public remain ignorant of its discourse. As Walter Ben Michael’s book The Problem With Diversity (2011) describes, Americans have an easier time discussing and embracing difference of race than difference of class. This is interesting because although Americans love to embrace diversity, disability is still very much a taboo in American society. Disability is generally silenced, poorly portrayed, ignored and highly discriminated against as we beautifully described in the work Why I Burned My Book (K. Longmore 2003). Although the field of disability studies is growing, various articles by Garland-Thompson and several other academics have shown that there is still a vast problem of misrepresentation. Because of this, the disability community developed a slogan: Nothing About Us Without Us. This generally means that whenever someone chooses to discuss disability in one way or another, the disabled community demands to be involved in the process in order to make sure that they are portrayed accurately. “Nothing About Us Without Us” is typically displayed in the disability community as a demand for inclusion in debate. But there are that who take the policy further and interprets the policy very narrowly. There is a minority of the disability community that believes that all research and published material should only be done by people with disabilities as seen through research asking who can be allowed to study disability (Kitchin 2000). We see examples of narrow interpretation of the policy through statements from Disability Rights Movements advocate Ed Roberts who famously said: “When others speak for you, you lose” (Charlton p.3). The Policy has further typically been narrowly interpreted by the deaf community as we see in the movie Sound And Fury where the protagonists insists that able-bodied people never will be able to understand the deaf experience (Aronson 2001). The following paper will explore the more extreme version of the “Nothing About Us Without Us” policy and survey the dilemmas it creates in perspective to inclusion and the multicultural society. As we shall see, although the “Nothing About Us Without Us” is a reflection of the community’s desire to be empowered, the policy creates a number of conflicts in relation to liberalism, democracy, multiculturalism and freedom of artistic expression should it be interpreted very strictly.
The doctrine of “Nothing About Us Without Us” is a reaction to centuries of discrimination against people with disabilities. In her article “Disability History, Power and Rethinking the Idea of ‘the Other’”, J. Kudlick describes how disability as an academic field jumped from infancy to adulthood without going through the typical stages of acceptance and struggle that other emancipation and empowerment movements had gone through before it (Kudlick p.557). Because of this sudden leap from scarce academic work to a fully developed field of research there is a large disconnect between what disability advocacy groups and academics know about disability compared to the general public’s knowledge. This also means that there is a large gap in the way the public ought to be thinking of disability and the way the public actually is thinking about disability (Kudlick p.558). Because of this gap in awareness and the continuous misrepresentation of disability in movies and literature as discussed by Garland-Thompson (2005), the disabled community sees a need to reinvent itself in the eye of the public. In the movie When Billy Broke His Head and Other Tales of Wonder, we are presented with a view of the disabled community as a strong and intellectual political force that continuously becomes ignored by lawmakers and the general public (B & Simpson D.E 1995). The movie also shows how people with disability are subject to the stereotype that they are miserable, alone, and desiring death, when in reality, according to the film, the disabled community is powerful, strongly-knit, supportive and inclusive. People with disability are subject to the consequences of the modern interpretation of the word “normal”. In other words, the public sees disability as a distortion of normalcy when it should be seen as human variation (Garland-Thompson 2005). According to “Rethinking Disability” (2010), ableism (the idea that able-bodied people are superior to disabled people) is a major problem in society and people with disabilities are often ascribed the status of second class citizens: they become burdens that take more than they contribute to society (p.18). Because of this discrimination and constant misrepresentation, in 1993 the South African disability movement came up with a doctrine on how discuss disability and create more accurate portrayals of the community (Charlton p.3). This idea stemmed from a political campaign run by underrepresented minority groups in the new Eastern European democracies. The South African movement for disability rights and later the U.S DRM (Disability Rights Movement) decided to obtain the slogan “Nothing About Us Without Us” as front for their policy because they believed it reflected their agenda of eliminating disability invisibility and misrepresentation (Charlton p.3). Ed Roberts, one of the international leaders of the DRM, believed the slogan and inherent policy within it spoke to an important lesson learned from other civil rights movements: “When others speak for you, you lose” (Charlton p.3). In other words, when non-disabled people speak for disabled individuals they inherently assume that disabled people are incapable of making sound political choices and essentially disregard disabled people’s right to assert themselves. An illustrative example of the flip side of this lesson is when the narrator from the movie When Billy Broke His Head attempts to run for a local political position and is completely ignored (B & Simpson D.E 1995).
The general consensus amongst disability advocacy groups is that disability is a socially constructed concept relative to culture and time. This means that if society tells the individual that he/she is disabled, then that person is disabled regardless of self-image and independence in society (Charlton p.8). We see that if one unpacks this concept of disability, the definition bears similarities to W.E.B Dubois’s famous definition of a black man as “a person who must ride “Jim Crow” in Georgia” (Randall 2008). In other words, one became black when society defined one as black. Because disability is a socially constructed and stratifying concept, the goal for the more radical advocates of “Nothing About Us Without Us” was to reshape the idea of disability by having full involvement and control over the concept. Thus, “Nothing About Us Without Us”, requires anyone attempting to take action or represent disability to consult the community first. The disability community itself thereby becomes the grand arbiter and authority of material and policies on disability issues. Although this might seem like a fair and just idea at first, a dilemma than arises when trying to disentangle the consequences of a literal interpretation of the policy.
Does being a part of a group give one authority to censor everything said and created about the group? It seems here that although the disability community is attempting to counteract stratification on their basic humanity, the policy goes against the constitutional right to freedom of speech. A core component of democracy is the freedom to deliberate (Mbali 2011) and the absence of censorship. If people were to consult the African-American community every time they wished to publish or discuss issues related to black people there would be an instant rise in free speech court cases. The fact that people are part of a certain group does not give them the legal or logical justification to control everything said about that group. As a matter of fact, if every subgroup decided to run the “Nothing About Us Without Us” policy, it would lead to the elimination of free speech since every group would wish to control and censor what others published about them.
Furthermore, the “Nothing About Us Without Us” policy assumes that the group always knows what is best for itself. Such a claim is especially controversial when dealing with disability because the group also includes people with emotional, intellectual, and cognitive disabilities. When unpacking this notion of knowing what’s best for one’s own group we find that it is similar to the discussion of individual group rights found in works regarding multiculturalism. If we look at the notion of self governance we find that scholars have written extensively on the concept of guarding one’s own identity but depending on how one views society and the goals for society the outcome of the discussion will vary. Generally the discussion can be broken into pro group rights or pro assimilation. Because the disability community is, in fact, a community, and it believes itself to be an outcome of human variation, and in addition wishes to be heard in legislative and political discussion, one can treat the disabled community as its own cultural minority group. This means, for the sake of argument, that we can group disabled people together with other minority groups such as Blacks, Latinos, Mormons, Jews, Pacific Islanders, Muslims, homosexuals, and the list goes on. If one takes the position that the disabled community is a cultural identity (which the deaf community in particular has extensively argued) (A. Padden p.509-510)) then according to influential scholars such as Will Kymlicka, Cornel West, and Susan Moller Okin, the disabled community is entitled to special group rights. Will Kymlicka argues in his text Multicultural Citizenship (1995) that groups that have been previously self-legislative and have their own distinct language and set of cultural beliefs and traditions should be granted special rights within society as long as any of the previous mentioned distinctions do not oppress the rights of the individuals within those groups (p. 152). If we look at the deaf community as an example, all of the previous set conditions then apply to their community especially when considering the unique cultural practice of sign language. Kymlicka defines the bar for common functional co-existence to be freedom of the individual, the acceptance of difference, and democracy as the overall form of rule (p. 153). Kymlicka’s argument overall fits fine with the agenda of the disability community the problem arises when the disabled community asks for one of their special group rights to be the ability to censor discussion about their community as seen through the extreme version of “Nothing About Us Without Us”. The result is a form of censorship, an idea that goes against Kymlicka’s argument of what rights can be granted in a fair multicultural society and inherently creates a dilemma. On the one side, we wish to acknowledge the disability community as a unique and worthy social group and give them the group rights they thereby are entitled to, but on the other hand we find a problem with one of the rights that the group demands because it philosophically hinders our freedom of speech and thereby the basic foundations of democracy. Kymlicka argues extensively that multiculturalism cannot exist without liberalism because multiculturalism springs out of liberalism (p. 156). Liberalism therefore becomes one of the required ideals to embrace in order to have a group co-exist with other groups in the multicultural society. The problem occurs when a group embracing liberal values attempts to co-exist with a group that does not. Kymlicka argues that a group or majority group has no right to impose its liberal values on to a minority group that does not accept them but a dialogue should always be initiated (p. 171). This means that society has to acknowledge the disabled community as a cultural group (which is not a problem) but also acknowledge and embrace their request for a seemingly illiberal policy. The disabled community wishes to be included and has, in fact, steadily been more and more included in general society. As the disabled community becomes increasingly more involved in multicultural society (especially in the American context) it has to adapt and participate in the debate other groups are subject to. ‘
The question of who can discuss and portray disability becomes even more entangled when taking the feminist perspective on multiculturalism into account. According to feminist scholar Susan Moller Okin (1999), every society is created from a framework that keeps men in power and women submissive. All traditions created through those cultures reflect this power relationship. This inherently means that all traditions are in one way or the other sexist (p.4-5). Since disability is created or born under the subjectivity of cultures, the disabled community can be included within this discussion. Although this seems rather radical, Okin suggests an either complete redefinition of cultural practices (p. 9) or a complete reset of culture in order to create an egalitarian society (p. 9). For the disabled community this means that when looking at the “Nothing About Us Without Us” policy, the disabled community has the responsibility to make sure that their own conduct and cultural norms are redefined to take feminism into account and to ensure that content published on disability also respectfully represents disabled woman. Furthermore, the “Nothing About Us Without Us” policy poses a problem in relation to feminism because it presupposes a hierarchy within which certain individuals in the community get to choose what is a good representation of disability and what is not. According to Okin’s theory, any hierarchy already existing within society is sexist, and in this regard, the disabled community is no exception.
When examining disability in relation to multiculturalism and modern society, the discussion of cultural expression as a tool for empowerment becomes important because minority communities historically and currently use different artistic outlets to bring forth their political agenda. A great example of such an outlet would be the way rap music historically served as a voice for disenfranchised youth in Los Angles in the 1990s (Perkins 202). Professor Cornel West argues in his article The New Cultural Politics of Difference (1992) that cultural workers in the 21st century should reject the old conception of art and culture, and instead embrace a new canon that accepts and praises the expressions of cultures from all layers of society in order to reach social equality. This conduct will then eventually lead to an insurrection of a new society (West p.1). West argues that rejecting the old conceptions of art will ultimately lead to a more socially and economically equal society and will represent social groups in a more truthful manner. It will create a society no longer built upon power structures established by centuries of white European dominance (West p.19). The elimination of such power will also lead to the elimination of other concepts such as ableism and the invisibility of disability which is what the DRM is essentially fighting to achieve. The problem with “Nothing About Us Without Us” in the context of Cornel West’s cultural project and the liberation of minority groups through art is that the policy creates a hierarchy of what is considered “good” art for the disability community both externally and internally. If we look at this externally it becomes apparent that the simple placement of a value bar that publications have to pass to be considered “worthy” of representing disability counteracts Cornel West’s argument because it creates a power structure for other groups to fight against. Put more simply if other groups have to ask for permission or live up to a certain standard to publish something about someone else, then the controlling group is putting themselves in the seat of the very oppressing majority that the New Cultural Politics of Difference attempts to reject. The disability community desires empowerment and inclusion, but the use of a policy like “Nothing About Us Without Us” will counteract the mechanics that will bring them equality. Simply put being the only group demanding censorship is counterproductive.
This problem becomes even more apparent when looking at the internal hierarchy that a narrow interpretation of a policy like “Nothing About Us Without Us” creates. The policy requires that outsiders take the disability community into account and include them when making choices concerning the disability community but that same community is enormous, highly diverse and structured into many smaller unites with different causes. All of these characteristics make it difficult to properly engage with the group as a whole. “Nothing About Us Without Us” demands homogenization and requires an authority to make the decision of how the disability community sees any work that concerns it. This means that someone has to be in charge of making those verdicts while others in the disabled community are not. Can a blind person speak on behalf of a wheelchair user? Is an intellectually-challenged individual eligible to speak on behalf of people with cerebral palsy? How would such a board of officials be organized? If “Nothing About Us Without Us” is to be read in its purest form, it requires that every single disability known to man be present and represented within such an organization. This again creates a problem of definition, and leads to the question of who exactly is disabled or even disabled enough? Is the HIV/Aids community considered part of disability? What about the elderly or the obese populations? The question of which subgroups are considered part of the larger group makes a significant difference for a policy like “Nothing About Us Without Us” because it defines the overall opinion on disability. In terms of West’s article, the internal hierarchy that the policy requires will counteract the idea of free sub-cultural expression and insurrection for the same reasons it hinders it externally. If “Nothing About Us Without Us” is fully implemented, it means that not only outside sources will have to consult the community; disabled people wishing to express disability will have to do so as well.
In her article: “Should Blacks Represent Blacks and Women Represent Women? A Contingent ‘Yes’”, Jane Mansbridge (1999) concludes that minority groups have the right to and should represent themselves in the political sphere if they have a history of being disenfranchised (p.654). Descriptive representation is a powerful tool for a community if it has a history of being oppressed or ignored and it is therefore understandable that the disabled community has created a policy like “Nothing About Us Without Us”. Inclusion is the way to empowerment, but as we have seen, the extreme version of the policy poses numerous problems when put into the perspective of multiculturalism and democracy. As disability studies have shown, there is indeed a general misrepresentation and lack of understanding from the general public regarding disability and in order for such misrepresentation to end the disabled community has to be involved and must obtain their own strong voice. This being said, obtaining such a voice should not come from a method that in its purest form limits the freedom and democratic rights of other groups. Instead of trying to control what others publish about disability, the community should rather be concerned with publishing their own material and in that way prove that the disability community is capable, strong, intellectual, diverse, and un-ignorable as we have previously seen with movies like Murder Ball (2005).
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Million Dollar Baby. Dir. Clint Eastwood. By Clint Eastwood, Hilary Swank, and Morgan Freeman. Filmax Home Video, 2005. DVD.
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Sound and Fury. Dir. Josh Aronson. Prod. Josh Aronson and Roger Weisberg. Perf. Jaime Leigh Allen, Jemma Braham, Freeda Cat. Artistic License, 2001. DVD.
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When Billy Broke His Head And Other Tales Of Wonder. Dir. D.E Simpson and B. Golfus. Independent Television Service and Corporation, 1995. DVD.