Disability Studies Quarterly
Spring 2006, Volume 26, No. 2
Copyright 2006 by the Society
for Disability Studies

Deciding Who Gets to Decide

Susan L. Gabel, Ph.D.
National College of Education at National-Louis University
Evanston, IL, USA
E-mail: sgabel@nl.edu


On the surface, Rosen's study would appear to be the story of the successful advocacy for Deaf culture and language in schools. In this response, I read the subtext of Rosen's article, in which troubling questions arise about systemic structures that work against full access to decision making, the dilemma of diversity, the problem of participatory parity for disabled students who have been shut out of the democratic process, and the question of who gets to decide which arguments about education prevail.

Keywords: IDEA, Deaf culture, sign language in schools, participatory parity, dilemma of diversity


In considering Rosen's premise–that "the reconceptualizations of deafness for IDEA purposes and practices...has inadvertently...led to a proliferation of classes and programs in American Sign Language (ASL) and Deaf community and culture in American public schools"–many critical questions come to mind. Two questions speak to the very heart of education in a pluralistic democracy: Who decides how D/deafness (or disability) is conceptualized in schools? Who decides which policies and practices are applied to the education of D/deaf (or disabled) students? Rosen outlines some of the debates about these questions in relation to ASL. Primary among these are the debates about modes of communication, whether or not ASL constitutes a foreign language and whether or not the use of ASL as a first language constitutes cultural rather than remedial behavior. Rather than enter into those debates, which I assume have been well published but outside my area of expertise, I will focus on what I consider to be one of the most intractable problems of public education and one that is well illustrated in Rosen's description of the battles over ASL in schools: deciding who gets to decide. To do this within the constraints of this venue, I take a very general approach to the question of deciding who gets to decide and leave filling in the details for later. I begin with a brief discussion of the problems with an underlying epistemology of the IDEA, which I frame here as the distributive paradigm.

Distributive Dilemma

In a superficial way, this starting point illustrates who gets to decide when it comes to disability and education. According to Iris Marion Young (1990), distributive systems

include any structures or practices, the rules and norms that guide them, and the language and symbols that mediate social interactions with them, in institutions of state, family, and civil society, as well as the workplace (p. 22).

Associated with values of justice, distributive systems "condition people's ability to participate in determining their actions and their ability to develop and exercise their capacities" (p. 22), thereby delineating the boundaries of authority for who gets to decide.

Deborah Stone (1984) reveals the negotiations and tensions inherent within distributive justice by using the Social Security Administration (SSA) as a case study. "The purpose of the disability category," she writes, "is to keep everyone in the work-based distributive system except for the very neediest people those who have legitimate reason for receiving social aid" (p. 118). Disability, she argues, becomes a "restrictive mechanism" that relies on "a formal definition of disability based on clinical criteria" and "objective tests" (p. 118). Using SSA as an example, Stone maps out the characteristics of a distributive system, each of which will be recognizable to anyone who has knowledge of IDEA or has participated in special education: (1) the system restrictively defines disability to include the neediest cases and exclude the greatest number possible, (2) the definition is as immune as possible to influence by applicants, (3) "objective" diagnostic and eligibility requirements are established by the system, (4) diagnosis is conducted by experts and eligibility decisions are made by experts, and (5) categories are fixed.

Given these brief references to Young and Stone, one might conclude that the answer to "who gets to decide?" is, very generally, "the system" or "a system" (e.g., Social Security Administration, special education, the government, etc.). As stated earlier, this superficially may be true; however, Young's premise holds that the distributive paradigm "ignores and tends to obscure the institutional context within which those distributions take place" (pp. 21-22). If the distribution system is assumed to be just, then the unjust social conditions that create the need for distributive justice can be invisible to participants in the system as they focus their energies on figuring out and following the rules of resource allocation and acquisition imposed by the system.

If "the system" shields us from view of the social conditions that create the need for "the system," then where can one find the seat of power? In one sense the answer to the question is in Rosen's article in his description of the D/deaf language debates. He writes:

The communication situation of the signing D/HH students in public education classrooms soon drew calls from advocates and researchers and the American Deaf community...The National Association of the Deaf (NAD), a leading American advocacy organization of D/HH individuals prepared position papers...Several researchers called for the teaching of sign language to hearing students...

Later, Rosen writes that "aware of the disappointing results for signing D/HH students in integrated settings, Congress commissioned a study of the situation" and that "in 1997, in the IDEA definitions for deafness, Congress deleted references to speech and hearing difficulties and their role in receiving linguistic information" so that "deafness has now been redefined in the same way as other disabilities, to include only students who need special education and related services." Finally, "the 1999 IDEA regulations included sign language as one of the primary languages of D/HH students and their preferred mode of communication." Teachers, advocates, the Deaf community and advocacy organizations as well as politicians all participated in the decision about ASL in schools. In a democracy, then, the most general answer to the question of who gets to decide appears to be "we do." But just who is "we"?

Dilemma of Diversity

Given his history of the development of official policy toward ASL and the infusion of Deaf culture into schools, I take Rosen's implication to be that one result of the increased use of ASL has been an increase in the cultural diversity of schools or at least the recognition of the contribution of Deaf culture and ASL to diversity. Yet it is insufficient to say that in a democracy "we" get to decide and that because we are culturally diverse, a range of opinions and perspectives will contribute to decisions and that, consequently, justice will prevail, as seems to be implied in what has happened with ASL and Deaf culture. (Rosen does not claim that justice has prevailed, but it is an implication of his argument.) In fact, the debates could easily have resulted in a different outcome and one that goes against the notion of Deaf culture if the ASL advocates had not argued persuasively and garnered the resources necessary to prevail. Rosen's history of the emergence of ASL and Deaf culture in schools is an example of the "dilemma of diversity" (Boyd, 1996), which is the tension between

accepting the fact that cultural diversity constitutes an established aspect of contemporary democratic society and accepting the requirement that prescriptive claims that are located in the general public domain must grip members of that public, wherever they are located within that diversity, if the claims are to have legitimacy (Section 1, ¶1).

In the case Rosen presents, schools, as microcosms of society, are confronted with not only significantly divergent opinions about what constitutes good language instruction for D/deaf students, but also where they should be taught, by whom and when and, finally, whether or not all or only some D/deaf students are disabled. Given such divergent opinions, whose view should, in fact, prevail?

These debates and others like them occur within even larger debates about language and literacy, and whether or not the participants in the debates realize it, they are struggling to decide what can be shared across differences. Boyd argues that in such debates, participants do not, in fact, realize the depth of their dilemma, but that

the dilemma of diversity tends to lurk in the background of public consciousness, rarely seen in its full strength within public discussion of the implications of cultural pluralism (Section 2, ¶1).

(Boyd makes it clear that he strictly is addressing cultural pluralism and not other forms of pluralism, e.g., "race, class, gender, sexual orientation, or ableness," Section 1, ¶2. However, I believe my application is acceptable, given the centrality of ASL and Deaf culture in Rosen's discussion.)

Participatory Parity

So, while on the surface it would appear that distributive systems–in this case, the system resulting from IDEA–gets to decide when it comes to disability and education, this is only a symptom of what is determined through intense socio-political negotiations between and among stakeholders within historical and economic contexts, while the power relations that circulate invisibly throughout such negotiations tweak and twist the results. That ASL and Deaf culture prevailed–if in fact they did (one must question this)–might not be as important in the long run as whether or not the intractable problem of who gets to decide has been resolved for future and inevitable struggles. If not resolved, then the next debate, which could again be about ASL and Deaf culture or something else as important, could go either way–for or against disabled people's equal access to education.

I propose that the problem of deciding who gets to decide remains and that those of us in Disability Studies in education must address this and do so soon. To begin, I suggest borrowing Nancy Fraser's (2000, 2001) notion of "participatory parity," which Michael Berube (2003) has applied to disability. Berube describes participatory parity as "the imperative that a democratic state should actively foster the abilities of its citizens to participate in the life of the polity as equals" (p. 56). He points out that participatory parity is doubly useful in that it "names both the state we would like to achieve and the device by which we can gauge whether we're getting there" (p. 56). Fraser argues that "at least two conditions must be satisfied" to "ensure participants' independence and 'voice'" (Section 2, ¶7). Fraser refers to the first condition as an objective one and argues that

it precludes social arrangements that institutionalize deprivation, exploitation, and gross disparities in wealth, income, and leisure time, thereby denying some people the means and opportunities to interact with others as peers (Section 2, ¶7).

Interestingly, some aspects of this first condition bring us right back to the very problem distributive systems are intended to ameliorate: disparities in wealth and income. Fraser's last clause is most relevant for disabled students in schools: They need the "means and opportunities to interact with others as peers." This is reminiscent of Rosen's example of the unintended consequences of having D/deaf students attend general education classrooms while using their first language. Once Deaf students were present and with the means to communicate with peers, there were measurable changes in the social arrangements of schools (e.g., ASL taught as a foreign language, interpreters available so Deaf and hearing students could communicate). While Rosen's article does not deeply examine social arrangements, one can infer about some of them from the data he presents. For example, the mere reconceptualization of deafness shifted social relations so that Deaf students were not immediately assumed to be disabled and in need of special education.

"The second condition for participatory parity," writes Fraser, is "intersubjective" and "requires that institutionalized patterns of cultural value express equal respect for all participants and ensure equal opportunity for achieving social esteem" (Section 2, ¶7). Here the challenge is significant because so many variables are at play for disabled people in schools; first, because many disabled students are segregated from the general population, second, because of the need for universal design for instruction to assure equal opportunity to learn and third, because disabled students might have, as Berube puts it, "a substantially different understanding of participatory parity than that held by previously dominant groups and individuals" (2003, p. 56). In other words, once disabled students get into general education classrooms (if they do at all), they often still face a curriculum and instruction that exclude them as well as practices related to "inclusion" and the "democratic classroom community" that have not necessarily been considered in relation to or influenced by them as disabled people. As Berube puts it so well, "without a significant theoretical and practical account of disability, we can have no account of democracy worthy of the name" (p. 57).

Who Gets to Decide?

This brings us back to one of the most basic questions in education in a pluralistic democracy. At the bureaucratic level of distributive systems and their politics, I propose that for the most part disabled people have not been part of the decision process. In fact, distributive systems intentionally are insulated against this. So, who gets to decide? With participatory parity, we all get to decide but we do so with certain caveats. First, we must recognize the tensions Boyd delineates and we must accept that advocacy is political persuasion that, to succeed, must "grip members of the public," as Boyd puts it (1986, Section 1, ¶1). If Rosen's conclusions are correct, then his is an example of this caveat at work. Second, we must recognize the "problem of speaking for others" (Alcoff, 1991) and figure out how to arrange social conditions so that disabled people speak for themselves. Again, some evidence of this is found in Rosen's article. Third, we must hammer away at the social conditions of schooling so that disabled students have equal opportunities to practice and learn how to be democratic citizens who demand to be heard and refuse to be shut down. This last caveat is more challenging than it sounds because it requires schools to create opportunities for disabled students to make decisions, exercise choice, serve in leadership roles, and take risks well beyond what is offered today. It also challenges schools to permit, even encourage, disabled students to speak out, resist exclusion, and actively pursue participatory parity in the face of today's educational authoritarianism.


Alcoff, L. (1991-92). The problem of speaking for others. Cultural Critique 5-32.

Berube, M. (2003). Citizenship and disability. Dissent, Spring, 52-57.

Boyd, D. (1996). Dominance concealed through diversity: Implications of inadequate perspectives on cultural pluralism. Harvard Educational Review 66,3. Retrieved November 11, 2002, from http://proxy.nl.edu:2070/WebZ/FSPage.

Fraser, N. (2003). Social justice in the knowledge society: Redistribution, recognition, and participation. Wissensgesellschaft. Retrieved December 15, 2005 from http://www.wissensgesellschaft.org/themen/orientierung/socialjustice.html.

Fraser, N. (2000). Rethinking recognition. New Left Review 3. Retrieved December 15, 2005 from http://www.newleftreview.net/NLR23707.shtml.

Rosen, R. (2006). An unintended consequence of IDEA: American sign language, the Deaf community, and Deaf culture into mainstream education. Disability Studies Quarterly, Vol. 26, No. 2.

Stone, D. (1984). The disabled state. Philadelphia: Temple University Press.

Young, I. M. (1990). Justice and the politics of difference. Princeton: Princeton University Press.

Copyright (c) 2006 Susan Gabel

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