The Importance of Definition

Part of the difficulty in developing a definition of human rights that is inclusive of all people, regardless of ability, behavior, or appearance, is the definition of disability. Constructing an identity category that binds together the disability community while recognizing the needs of distinctly different disability types presents a unique challenge. One contested consideration is whether to construct disability as a difference in relation to the majority, requiring special consideration and tolerance, or to identify disability as trivial differences that are trumped by similarities between people with and without disabilities. According to disability scholar Tobin Seibers, identity politics assumes people should focus on differences in order to maintain identities and be heard through a united front. A humanity and rights based approach, on the other hand, proposes that all minority groups will be subsumed into the majorities, effectively omitting difference. 11 The question of same or different comes down to the political approach being argued: identity or human rights. 12

While the current paper focuses on human rights, in order to ensure these rights are protected the discussion of what disability means and to whom it relates is an integral part of the dialog. The construction of a unifying identity has been a divisive issue among disability groups and one that has challenged progress towards an ethos of inclusion and equality. One fissure in the community lays between people with physical and intellectual differences. This split is partly a consequence of the application of the social construction model to disability by early disability scholars. This model states that disability occurs when one's social and built world does not fluently accommodate one's body and/or mind. The model soon came under criticism for not appreciating the phenomenological experiences of people with various disabilities. Proponents suggest that mass social and infrastructural changes will eliminate all disability while critics claim the model neglects to appreciate the daily difficulties and pain of living with disability. 13 This perspective is particularly dismissive of people with intellectual or psychiatric impairments, such as those on the autism spectrum, who are not primarily disabled from physical, changeable infrastructure.

The split between those with physical and those with intellectual disabilities is a long-standing issue that is also the result of negative stereotypes about the groups. Many people with physical disabilities do not want to be considered under the same identity category as those with intellectual disabilities, fearing that the stigma of cognitive inability will seep into stigmas of physical inability. Meanwhile, people with intellectual differences fear that the matters confronted with physical disabilities, especially in relation to self-reliance, will not properly address their daily concerns and dominant issues. 14 These conflicts prevent a united identity which can inform the progress of widespread improvements in human rights. This split has been reflected in the minds of the public for generations. While people with physical disabilities have historically been more integrated into and visible throughout communities, many communities have not known what to do with people with cognitive, intellectual, or psychiatric differences. Communities frequently turn to segregation, exclusion, and deprivation of rights. 15 This is yet another issue that serves to divide the disability community.

Autism, and related conditions, are defined based on behaviors and characteristics that are similar to those seen in other disenfranchised disability groups. As a disability related to culturally unaccepted social, communicative, and behavioral expressions, autism is relevant to discussions on disability as a socially mediated state. Since it is commonly associated with cognitive impairments, either 'real' in the statistical sense of having a quantitatively lower intelligence score or assumed from a different communicative style, and since there is a tradition of assuming that those with autism are also intellectually impaired, autism corresponds to intellectual disabilities. As a state of being that is often evident in physical behaviors such as repetitive motor movements and unique gaits, autism relates to physical disabilities. Finally, as autism has been historically conflated with schizophrenia and is still perceived as a psychiatrically based disorder, as evidenced by it's continued presence in the DSM IV TR, 16 autism related issues overlap with concerns of the mental illness population.

As as state of being that includes differences in communication styles, behavioral preferences, and social interaction styles, autistic people are often refused equal consideration within their home, local, and global communities. People who do not communicate with a verbal voice, as is the case with many on the autistic spectrum, are assumed to be less capable and, thus, are more stigmatized. This is particularly true in Western communities that place high value on personal independence 17 and where, consequently, autistic people have often been treated as second-class citizens. Hidden in sheltered workshops, refused viable employment, stared at, misunderstood, and misrepresented, this population has been and still is rejected from 'normal' society. When an individual's access to rights is inextricably linked to their position in the social stratum, 18 an autistic person is certain to receive unequal access.

It is because of these connections and needs that autism and people on the autism spectrum present an ideal model with which to consider rights issues related to cognitive impairment, mental illness, and psychological and physical disability. While I am not arguing that autism solves the issue of disability identity, the traits and expressions of autism do address the issue of unequal applications of human rights for people who identify with physical and cognitive impairment as well as for people without disabilities. This is particularly true given the wide range of impairment, ability, and expressions within the autism spectrum such that some autistic people are virtually unidentifiable as disabled on a daily basis and others have impairments that need daily attention and assistance. Intra-autistic variance, along with the ties throughout the disability (and normate 19) communities makes autism a state of being that can help disability communities' efforts to improve respect and equality for every member of the human population.

Previous Models of Human Rights

Disability scholar Bryan Turner argues that human rights are to be enjoyed based on the fundamental frailty and vulnerability inherent within the state of being a human. By focusing on vulnerability, a state that all people experience at various points in life, disability and difference becomes an experience that can tie all humans together. 20 However, while vulnerability may tie the human population together based on an inherent aspect of human nature, it also assumes the recognition of humanity in others. For some people, the humanness and, thus, social worthiness of people with apparent and persistent differences in cognitive and behavioral expressions, such as some autistic people, is assumed to be absent. This assumption serves to complicate the vulnerability argument by ignoring the critical first step of defining a person as an actual person. 21 As is described more fully below, this is particularly true for significantly autistic people who do not use verbal language and do not assert their personhood in a universally palatable manner. Thus, while disability is often united through vulnerability, extreme vulnerabilities appears to dehumanize some people to the extent they are disqualified by others as members of the human race.

Alternatively, Eva Kittay argues for a model based on interdependent relationships throughout human communities as the shared principle on which justice and equality can be built. She argues that dependency and dependent relations go beyond previous traits and doctrines used to develop ethics of justice, equality, and human rights.

This principle, in contrast to the others, would not be based on our equal vulnerability, nor on our possession of rationality, a sense of justice, and a vision of our own good. Instead, it would be based on our unequal vulnerability in dependency, on our moral power to respond to others in need, and on the primacy of human relations to happiness and well-being.(113)

This notion avoids the initial assumption of an equal application of humanity by focusing on an act that stands outside of a uniquely human trait. However, as this principle ensures the physical and emotional support that most people prefer it fails to consider those with different approaches towards and desires for social interaction. Additionally, by basing the universality of this principle on a collective "moral power," it assumes those who avoid dependent relations are somehow immoral. This principle rejects people for whom regular social interaction and the prescription to care for and be cared for by others is unwelcome or distressing.

Rationality, dignity, independence, dependence, and vulnerability are all principles used to define and outline human ontology and can all be complicated by people with intellectual and psychiatric differences. This is precisely why Eva Kittay and Licia Carlson contend that it is this population who can "offer an opportunity to explore the nature and limits of concepts like justice, rights, respect, care and responsibility." 22 People with intellectual impairments have been granted some legal and civic rights, most of which are 'positive' rights in provisions for education and health care. 'Negative' rights, however, have been neglected. Negative rights include issues such as the right to assemble or worship 23 and are considered to be obvious and basic human rights, yet are overlooked in legal and civic discourse. Those who enjoy these rights reflect a community's composition and so it follows that those who can not participate remain on the outskirts. Negative rights are integral to creating an inclusive model of human rights. Since neither changes in physical environments nor legal provisions can ensure these rights, these issues are critical to discussions of basic human rights for people with intellectual, physical, and psychiatric differences.

Autism, Personhood, and Independence

Human rights is presumed to be shielded from considerations of social worthiness as well as social or civil rights. Yet when a person's social worthiness is denigrated or the rights of citizenship are removed, there is no protection for one's status as a human being, endangering the implementation of human rights. As described above, one's status as a human being presumes the presence of universal human traits, including the vulnerability Turner describes. 24 One avenue used to express humanness and ensure civic and human rights is through self-representation and advocacy. Personhood—a presumed requirement for self-representation and advocacy—is proclaimed in phenomenological accounts found in the media, health settings, and other social institutions. Yet personhood is often ignored and unrecognized in people with impairments and so must be negotiated by people with disabilities, their parents, educators, and caretakers. 25 This is particularly true for significantly autistic people for whom verbal communication presents a particular challenge.

A perceived inability to represent one's personhood, or have it adequately and accurately represented by others, jeopardizes the autistic community's eligibility for human rights. Autism scholar Majia Holmer Nadesan proposes that the constructs of autism that negate one's humanness reflect contemporary society's widespread anxieties about and desires for opportunities of personhood. 26 In other words, autism can be seen as constructed to represent the antithesis of contemporary, Western personhood.

Acts of interdependence, such as a communicative reliance on others, amongst human populations has become one way in which disability scholars such as Kittay promote the universality of disability rights and a more appropriate structuring of human rights designations. All people are dependent on others throughout their lives: we rely on people to make our clothes, grow our food, and/or heal our illnesses. 27 As a result, some scholars propose that the best and only solution to ensure equal access to human rights is the creation of a community based on dependent relationships, 28 including and especially those where a person depends on others to express personhood. Other activists have taken a more immediately realistic approach by attempting to redefine autonomy and rationality—two traits often assumed absent in autistic people—by placing dependence at the very center of the human condition and rationality at the intersection of situational and relational factors. 29

The depreciation of dependence is the reason that autistic people are concurrently assumed to be entirely and pathologically independent, living in a state of uncommunicative internality, and devalued as being completely reliant on others. This assumption follows that autistic people are overly independent to the point of rejecting social interactions and requiring the help of those who appreciate the assumed inherent rewards of frequent human connections. These are among the many essentialist assumptions subsumed in the numerous myths and misunderstandings of autism that negate the humanness of autistic populations.

The numerous factors that make autism a state of being that is often deemed inhuman—varying identities and definition; difference in expressions of mindedness and personhood; interdependence and dependence; and issues related to self-expression—also allow autism to easily relate to physical, cognitive, and psychiatric difference. As such, the remainder of this paper outlines a proposal for a new framework for human rights built with autism in mind in order to relate to a wide variety of states of being. This model is also constructed such that specific disability related issues can be directly addressed. As noted above, the model being proposed is based on dependence, individuality, and human diversity.

Dependence

Kittay and Turner 34 have proposed models of human rights based on dependence and fragility, respectively. These models compliment each other and apply to issues encountered in the autism population. Turner's "common [human] ontology…grounded in a shared vulnerability" 35 focuses on suffering which Kittay's relational dependencies can work to alleviate. All people take part in relational networks that aid in the exercising of rights, yet these rights must be recognized and respected by people in the community and in the social institutions set up to secure access to rights. 36 Focusing on one or the other—fragility or dependence—only addresses half of the problem and, thus, only provides half of the solution.

This is especially true for autism, which is a disability that is largely based on relationality. The majority of the traits linked with autism are characterized in terms of relating to others; even internality and aloneness must be defined through the consideration of other people. 37 These relationally based traits, however, lead to contradictory constructs of the value, and devaluation, of dependent relations through the pathologization of autistic (in)dependence. Autistic people who have different communication styles often rely on others to communicate needs and assert personhood. This dependence ensures autistic people are considered to be overly dependent. As described above, these relationships also lead to a negation of personhood for many in the wider community. When people are assumed to lack personhood, they are also assumed ineligible for human rights. Simultaneously, autism is identified as a state of extreme independence, reflecting a psychiatric trend to pathologize extreme levels of highly valued traits. 38 The paradox of autism is that, in a culture that strives for autonomy and independence to such an extent that it stigmatizes most dependent relationships, autism is able to define a level of independence that requires rehabilitative efforts.

By removing the stigma of dependence, the extreme valuation of independence and autonomy will lessen and so will, perhaps, the pathologization of an 'overly' independent state. Social skills programs, communication training, applied behavior analysis, and other interventions that are implemented with autistic individuals reflect the desire to create a more culturally appropriate level of independence. Many autistic people struggle with communication difficulties and desire to better navigate the social world and often find these programs helpful. However, many times these efforts fail to consider variations in desired amounts of independence among individuals.

A model based on dependent relations that considers the devaluation of autistic people highlights the variety and diversity of dependent relationships within the human community. By including stigmatized levels of independence, the dependence networks considered under Kittay's model is extended to autistic people who prefer few, if any, social relationships. Many people strive to appreciate acceptable and valued dependent relationships, such as those in infancy, illness, or old age, yet this value needs to be extended to accept alternate dependent relationships. 39 This includes the dependence of a paraplegic on others for self-care tasks as well as the dependence of a nonverbal autistic person in communicating a desire to be left alone.

Removing a value based assessment of dependent relationships will also lead to more acceptable employment and education opportunities of people of varying differences. Students who are better educated with the assistance of an extra adult aide will no longer be singled out as draining the system or being less abled. On the other hand, those who learn better at their own pace and with little, if any, interactions with (and, perhaps, distractions from) teachers or students can proceed with their education without being assumed to lack a critical human element. Similarly, respecting an adult's need to rely on others to guide their interactions within the workplace or desire to work in environments without the possibly distressing presence of many other people—such as teleworking—can improve productivity while also decreasing stigmas on one's desired level of adult dependence.

Adults work environments may be an ideal environment from which to enact and exemplify this dependence principle. Research on the effects of supported employment for people with disabilities shows that it not only increases the confidence of the employees and leads to higher wages, but that this model is more financially responsible for local communities than sheltered workshops or a home-based, welfare set-up. 40 Improving and increasing supported employment services alongside teleworking for people with disabilities are concrete ways in which to interpret respect for all levels of dependence into actions that will improve the lives of entire human communities. Employment and education are just a couple of the cultural sites to practice this aspect of the current model of human rights. The central element here is the destigmatization of dependence in favor of respect for the compassionate reciprocity possible in dependent relationships along with a respect for highly independent states.

Individuality

Issues of dependence in autism are also related to a system that provides categorical diagnoses that assume the presence of a set of characteristics that may or may not be experienced as problematic. These essentialized definitions of what a person with a disability is and needs are frequently inaccurate. This is particularly true within the autism community where the variety of expressions of autism is articulated in the maxim, "If you know one person with autism, you know one person with autism." 41 This individuality is neglected in most education and training programs that center on 'individualized' programs. Here, the individual attention is built on a set of skills and behaviors deemed advantageous by the education or mental health team. Individualization often only applies to the programatic level in which a student's performance currently reflects. Again, there are many families and autistic people for whom these programs dramatically help increase the quality of life and are driven by compassionate people. Yet, in consideration of a human rights model there is a need to emphasize the individuality of each autistic person and his or her specific wants, needs, and future goals.

The importance of recognizing individuality within autistic populations as well as people of all levels of difference, including normates, would be respected and harnessed with the eradication of special education. While this may, at first, seem like a radical notion, this idea logically follows under the principle of individuality. Current special education within the American public education system focuses on two main principles: Free and Appropriate Education (FAPE) and education in the Least Restrictive Environment (LRE). These principles are outlined in the Individuals with Disabilities Education Act (IDEA) to ensure that students with disabilities are educated in environments that are fair and just for the students and families. Each special education student's Individualized Education Plan (IEP) is designed to enact these criteria. 42

Given variations in autistic expression, the rise in rates of autism should mean that special education has become even more individualized, however, IEPs often reflect generalized approaches to special education. IDEA and the development of the IEP was a reaction to discriminating and unjust educational practices of children with disabilities. 43 Yet contemporary special educational structures have become, in some respects, more stigmatizing than ever.

Psychologists Robert Sternberg and Elena Grigorenko have argued that learning disabilities are diagnoses that occur at the intersection of biology and environment with such a strong reliance on specific environment that rates vary dramatically between states, counties, and even schools. 44 This means that some of the diagnoses are arbitrary or reliant on contextual factors. In addition, over-pathologizing children, which is most common in minority and immigrant children, is linked to low educational progress 45 and has been suggested as form of modern eugenics. 46 By applying the principles and practices of special education to all children, the need to qualify for these services via a diagnostic label will be erased. Fewer students would be labeled in order to be segregated from the rest of the student population or to access beneficial educational services that should be available regardless of disability.

FAPE, LRE, and IEPs, along with specific teaching strategies commonly used in special education classrooms like multi-sensory learning and material adaptation are useful for any student regardless of the presence of a disability. Education programs that inspect each student's needs and learning styles would not only improve the education of our youth but would also lead to less educationally based diagnostic labeling of learning, cognitive, and intellectual differences. Just as every autistic person is different from every other autistic person, every student has a different constellation of needs regardless of diagnosis or disability.

The primary tenet exemplified here through the proposal to eliminate special education is an increased attention to the individual needs of all students. It is true that this is an expensive request and one that the current American educational budget can not contain. However, this educational approach would destigmatize the individual needs of children in the special education system. While this example focuses on education, widespread respect for individual needs, desires, and expressions of selfhood is a critical tenet of basic human rights. This, as Michael Bérubé points out, includes the right to make what others consider poor decisions. 47 A person should have the right to eat unhealthily or not develop and maintain close friendships. Thus, a model of human rights based on autism will foster a respect of the presence and types of various dependent states as well as the individual desires for the necessary components of high quality of life.

Diversity

Finally, the current model includes a consideration for the sphere of humanity that rejects attaching designations of normality or abnormality. This includes reflecting inherent vulnerability without using words to indicate abnormality, such as discussing one's 'level' or 'degree' of disability. The neurodiversity movement, which considers autism as a part of the range of human neurological expressions, is a leading example of this tenet. Alison Carey points out that in modernity we rely on standardized tests, competition, and designer babies to reach a valued criterion of intelligence, or at least identify one's place in the hierarchy. 48 The current model suggests looking to the autism community, and neurodiversity movement, as a guide for how to develop a construct of human rights that recognizes a range of ability and intelligibility without relying on traditional testing measures or norms of behavioral expressions that lead to unnecessary value judgements. Autistic people are often highly intelligent in traditional and non-traditional ways, yet are almost always assumed intellectually impaired or incapable of learning in the presence of behavioral or communicative differences.

With this consideration in mind, this model places everyone in a sphere, instead of on a spectrum or level, of human variation respecting differences without the implication of a value based where on the spectrum one falls. A sphere of abilities recognizes a diverse range of abilities and capabilities within one person. Nearly everyone possesses a characteristic or trait that could be placed along the autism spectrum—intense focus, shyness, difficulties with communication, a distinctive gait, a preference for routine and so on. Instead of pathologizing a certain amalgamation of the traits, accepting all of a person's traits would facilitate an ethos of inclusion. The presence of any more or less of these traits would not, and does not, deem an individual any more or less human.

Widespread acceptance of this principle would lessen disturbing instances of disability hate crime by creating a community in which everyone simultaneously accepts their own vulnerabilities and differences and recognizes that those with more obvious differences also have traits considered to be more traditionally common. Quamby explains that disability hate crime is perpetuated by outdated stereotypes that dehumanize disabled people and is condoned by the 'collective culpability' that keeps community members from feeling responsible enough to act against these heinous acts. 49 In other words, disabled people are considered by their perpetrators to be outside of the human community because of their differences. When this behavior and these attitudes are not condemned by local and cultural communities, hate crimes are allowed to proceed without consequence.

Fostering an ethos of inclusion would halt the negative effects of assuming differences serve to qualitatively separate individuals from each other. When every person is considered to be comprised of a sphere of traits that avoids assumed value judgements—each considered critical to the whole of an individual—people will involuntarily focus on their own and other's entirety. With the focus off individual differences, those susceptible to hate crime, disability or otherwise, will cease to be singled out as inhuman, vulnerable, and deserving of abuse.