The History of the Self-Advocacy Movement

At first, people with developmental disability were spoken over. Locked away in institutions, medicated and sterilized without consent, mistreated and misunderstood, they were not in a position to be viewed as experts in their own lives. People with developmental disability did resist and advocate, but their environments and society at large limited the impact of their actions. Deinstitutionalization is the movement to close institutions, asylums, and state schools. Instead, disabled people live and learn in their communities. Activists organized, advocated, and used legal strategies to work toward the goal of shutting down abusive places like the Willowbrook State School in Staten Island, New York. Some parents and other family members were strong advocates for deinstitutionalization. They became viewed as the voice of their children.

But people with developmental disability had thoughts and opinions of their own. They had their own ideas about themselves, their disability, their community, and what they wanted life to be like. So people with developmental disability began to organize. They met up in groups. They advocated against institutions with the strength and inside information of survivors.

Self-advocates worked together to improve disability rights and fight for deinstitutionalization. Many self-advocacy groups began in the 1970s and 1980s as institutions were called into question and shut down (The Minnesota Governor’s Council on Developmental Disabilities, 2019). Mark Friedman of Speaking For Ourselves, Inc. and Ruthie-Marie Beckwith of  People First of Tennessee, Inc. wrote that for early members of Speaking for Ourselves and People First of Tennessee, speaking out about personal experiences in institutions was a powerful part of their advocacy work:

They overcame their fears and lack of experience and began reaching out to their incarcerated counterparts living in institutions. The members’ efforts to expose the nature and insidiousness of their oppression were relentless. As their voices grew in number and volume, so did the resistance they encountered from family members, professionals, family advocates, state officials, unions, and other individuals and entities with extensive conflicts of interest. (2014, p. 239)

As activists, self-advocates with developmental disability faced push-back as they fought to change conditions. Friedman and Beckwith (2014) described barriers like lack of money, transportation, telephones, formal education, and literacy/numeric skills. Additionally, self-advocate group members were often forced to work in sheltered workshops and to ask permission from support staff members to attend meetings. They note that “many of such difficulties that arose were a product of ableism and the effects of incarceration and paternalism, rather than inherent in members’ intellectual disabilities” (p. 239). This reality represents the social model of disability—showing how society disables people through ableist barriers.

As self-advocacy groups grew in power, self-advocates faced danger and roadblocks. Activists with exposed the rampant abuse they had survived in institutions. People with developmental disability continued to face high rates of abuse. Even self-advocates living in the community could be punished for their activism. Friedman and Beckwith (2014) explain, “Self-advocacy chapter members fortunate enough to move out of the institutions were routinely threated with ‘being sent back’ for not complying with minor rules or failing to “fit in” to smaller, but still segregated community homes” (p. 241). Despite these dangers, self-advocates kept fighting. They helped to change their own lives and the lives of other people with developmental disability.

Irma and Paul Milstein Division of United States History, Local History and Genealogy, The New York Public Library. (2015).  Willowbrook State School [postcard]. Retrieved from http://digitalcollections.nypl.org/items/510d47d9-ca69-a3d9-e040-e00a18064a99. Public Domain

 

Self-Advocacy and the Neurodiversity Movement

Neurodiversity is the understanding that all brains are different and that those differences are neutral. Neurodiversity as a concept can be considered particularly well-suited to many types of developmental disability. Judy Singer originated the term “neurodiversity” in the 1990s (Armstrong, 2010, p. 7). Autistic sociologist Damian Milton (2014) defines neurodiversity as follows:

For me, the concept of neurodiversity suggests that variations in neurological development are part of natural diversity, rather than something to be pathologised using a purely medical model of disability, defined by one’s deviation from statistical or idealised norms of observed behaviour. This is not to say that those who identify as autistic people or other forms of neuro-identity do not find life challenging. (p. 11)

Autistic self-advocacy overlapped with and followed in the footsteps of the pioneering self-advocates with intellectual disability and developmental disability. The neurodiversity movement has been around for decades (Kras, 2010; Milton, 2014). According to Joseph Kras, a big moment was when autistic self-advocates responded to the NYU Child Study Center’s 20__ billboard campaign. NYU Child Study Center formatted their disability service advertisements as “ransom notes” written from autism and other disabilities to parents. Here’s what Joseph F. Kras had to say about the Autistic Self-Advocacy Network’s (ASAN) and self-advocates’ response to NYU Child Study Center’s advertising campaign:

Ari Ne’eman and ASAN used the speed and penetration of the Internet to forge alliances with other disability rights organizations to quickly shut down the Ransom Notes campaign. As important, they foregrounded the neurodiversity movement’s evolution away from a paternalistic model of advocacy to one of self-advocacy. (Kras, 2010).

This campaign is one of many successful ventures that used the Internet to connect disability communities for advocacy. Advocacy and self-advocacy among people with developmental disability continues to evolve. Advocates work to make the world better for all people with disabilities.

 

Evolving Language: Language and the Self-Advocacy Movement

Nowadays, there are many types of advocacy and self-advocacy. Advocates do everything from fight for individual inclusion in the workplace and blog about disability rights to lobby for law changes and educate family members and professionals to participate in protests and civil disobedience. Social media sites, like Facebook and Twitter, have changed activism. People can connect with disability communities through the internet regardless of access to transportation and participate in social media activism campaigns. Language is the focus of some disability activism.

Eugenicists created language like “moron,” “imbecile,” and “idiot”. These terms were once medical labels for people with intellectual disability based on IQ scores. According to Thomas Armstrong (2010),

It was Goddard who first coined the term ‘moron’ (from the Greek word moros, which meant ‘dull’) in 1910, a word that was later applied to people who achieved an IQ score of 51 to 70. Those who scored from 26 to 50 were known as ‘imbeciles,’ and those with an IQ of 0 to 25 were deemed to be ‘idiots.’ These were actual scientific terms used by professionals to describe low-scoring individuals on IQ tests in the first half of the twentieth century. (pp. 141-142)

Once simply medical labels, words like “mentally retarded” devolved into ableist slurs (Barry, 2016). People with intellectual disability, and allies inside and outside of disability communities, have successfully campaigned against use of the “r-word” (Special Olympics, 2017). As Matthew Williams, who has epilepsy and an intellectual disability, said in his 2015 TEDx Talk,

There has been lots of change since Special Olympics began in 1968, but in too many cases, people with intellectual disabilities are invisible to the wider population. People use the r-word in front of me, and they think it doesn’t matter. That’s the word “retard” or “retarded” used in a derogatory manner. They’re not thinking about how much it hurts me and my friends. (Williams, 2015)

Beyond everyday speech, the advocacy also impacted the way the U.S. government writes disability policy. In 2010, President Obama signed Rosa’s Law, which with the purpose “to change references in Federal law to mental retardation to references to an intellectual disability, and change references to a mentally retarded individual to references to an individual with an intellectual disability” (P.L. 111–256, 2010). This legislation amended education, health, and disability rights laws, removing the outdated and offending language and replacing it with preferred language of “intellectual disability.” Rosa’s Law is one example of how language used around disability is important, and why some advocacy focuses on shifting disability terminology.

New York State Institute: a group of girls with Down’s syndrome, standing on some steps. Photograph. Credit: Wellcome Collection. CC BY

More language advocacy must still be done at other levels of government. People with developmental disability have higher rates of abuse than nondisabled people. NPR investigated and found that “unpublished Justice Department data on sex crimes… show that people with intellectual disabilities — women and men — are the victims of sexual assaults at rates more than seven times those for people without disabilities” (Shapiro, 2018). Meanwhile, some states still use offensive disability terms from eras when eugenics was considered a legitimate science, especially in legal proceedings. For instance, in court proceedings surrounding sexual assault, the State of New Jersey uses the terms “physically helpless,” “mentally defective,” and “mentally incapacitated” to describe people with developmental, mental health, and/or physical disabilities who are victims/survivors of sexual assault (N.J.S.A. 2C:14-3a [2C:14-2a(7)]). Court proceedings around consent should not dehumanize abuse victims with disabilities and survivors with disabilities through old-fashioned language.

Erasing euphemisms in favor of clear-cut words is another facet of disability language advocacy. Euphemisms are ways of not saying things straightforwardly. So rather than saying somebody has a disability, using a euphemism might mean saying somebody has “special needs.” Lawrence Carter-Long began a social media campaign, #SayTheWord, with this goal in mind, and other disability rights advocates enthusiastically jumped in. Jamie Davis Smith for the Washington Post reported that Carter-Long advocates for “disability” over “special needs”: “‘A need isn’t special if other people get to take the same thing for granted,’ he says, arguing that using terms like ‘special needs’ can obscure access to having those needs met, because they can make ordinary needs seem extraordinary” (Smith, 2017).

Morton Ann Gernsbacher, Adam R. Raimond, M. Theresa Balinghasay, and Jilana S. Boston (2016) agree that euphemisms like “special needs” detract from disability discussions. After the authors created stories about characters, who they either labeled with “special needs,” “a disability,” a specific impairment, or no impairment, they surveyed adults with and without connections to disability, asking them to rank the characters in terms of preference and to complete a free-association task around the words “special needs” and “disability” (p. 6). Free association is when people think of every word that comes to mind about a particular topic. So the researchers would ask their participants to brainstorm about the phrase “special needs,” and the word “disability.” The researchers categorized and analyzed the lists of words associated with “special needs” and “disability.” They concluded that the term “special needs” was vaguer, more negative, and more associated with “special rights” and “segregation” than the word “disability” (p. 9). Interestingly, “Participants were significantly more likely to associate developmental disability with the euphemism special needs than with the term disability” (p. 8). When general public hears “special needs,” they may think of people with developmental disability, but they also link “special needs” to negative words, segregated settings, and the idea that accommodations are going above and beyond. This free association may speak to the stigma and ableism surrounding people with developmental disability in particular. Gernsbacher, Raimond, Balinghasay, and Boston argue against using the euphemism “special needs” for these reasons.

Disability rights advocates are fighting to use the language they choose to define themselves. People in some disability communities overwhelmingly prefer identity-first language (“disabled person”) or person-first language (“person with a disability”). For instance, many autistic people prefer identity-first language (“autistic person”) (Kenny et al., 2015). Communities may collectively prefer one over the other for historical and advocacy-related reasons. In 1999, Jim Sinclair, an autistic advocate and community-builder and co-founder of Autism Network International, argued for identity-first language (“autistic person”) and against person-first language (“person with autism.”) Sinclair’s reasoning was three-fold: One, separation versus integration of identity; two, importance versus lack of importance of identity; and three, moral values attached to identity. Sinclair’s first reason for preferring “autistic person” is that “saying person with autism suggests that the autism can be separated from the person. … Autism is hard-wired into the ways my brain works. I am autistic because I cannot be separated from how my brain works” (Sinclair, 2013). So one argument for identity-first language is integration of disability into a person’s identity, rather than separating disability.

Sinclair’s second reason for preferring identity-first language is that “saying person with autism suggests that even if autism is part of the person, it isn’t a very important part. … We talk about male and female people, and even about men and women and boys and girls, not  about people with maleness and people with femaleness” (Sinclair, 2013). In a similar sense, Sinclair argues that “person with autism” makes autism appear incidental, or like something that could be removed or not mentioned without changing the person underneath. Yet Sinclair and many other autistic adults view autism as a core aspect of identity that affects everything else about their experience as a human being. This argument for identity-first language is that disability is an important identity that shapes lives.

Sinclair’s third reason for disliking person-first language is the message it might send about the value of autism, or autistic lives. Sinclair writes:

Saying person with autism suggests that autism is something bad—so bad that is isn’t even consistent with being a person. Nobody objects to using adjectives to refer to characteristics of a person that are considered positive or neutral. …It is only when someone has decided that the  characteristic being referred to is negative that suddenly people want to separate it from the person. I know that autism is not a terrible thing, and that it does not make me any less a person. (Sinclair, 2013)

Disability is too often seen as negative. Sinclair resists this negative definition of disability by putting autism at the center, and that autism is a part of or one way of being a person.

Just as Jim Sinclair argues for identity-first language, other people with disabilities argue for person-first language. Some early self-advocates with developmental disability favored “people with disabilities” over “disabled person” due to focusing on personhood rather than impairment. One large self-advocate group got its name because of this very reason. After attending a Canadian self-advocacy conference in 1973, people with developmental disability in Oregon gathered to plan their own the following year (The Minnesota Governor’s Council on Developmental Disabilities, 2019): “At this planning meeting, one man talked about being labeled ‘mentally retarded’ and said, ‘I want to be known as a person first!’ People First was later chosen as the name for a new self-advocacy organization” (The Minnesota Governor’s Council on Developmental Disabilities, 2019).  As an act of empowerment, some disabled people seek to reclaim ableist slurs and repurpose these terms for their own use. It’s important to recognize that reclaiming offensive language is only something that members of the marginalized group can do, not people without disabilities. For instance, some people with disabilities choose to refer to themselves as “crips.” Disability studies scholar Simi Linton says, “Cripple, gimp, and freak as used by the disability community have transgressive potential. They are personally and politically useful as a means to comment on oppression because they assert our right to name experience” (Linton, 1998, p. 17). It’s OK for people with disabilities to call themselves words that society recognizes as offensive. It’s best to ask each individual person with developmental disability what language they prefer to be called if they can communicate this information.  Otherwise, it’s best to make sure you use respectful, up-to-date language to talk about any person and their disability.

Language can be used to help or hurt, and the words used to describe people can be used to justify discrimination. As the R-Word: Spread the Word to End the Word campaign website puts it, “Language affects attitudes and attitudes affect actions” (Special Olympics, 2017). Why focus on language? Words hold great power.

 

Language and Developmental Disability

People with developmental disability, like people with any impairment, have diverse experiences and views on their own disabilities. Comedian and actor Zach Anner, who writes about his cerebral palsy, made a video with the Cerebral Palsy Foundation for their “Just Say Hi” campaign (2015), which urged strangers to greet people with cerebral palsy and other disabilities. In response to the Cerebral Palsy Foundation’s “Just Say Hi” campaign, disability rights scholar Kim Sauder, who has cerebral palsy, noted, “rather than telling people to ‘just say hi’ a more appropriate lesson would be to make it clear that disabled people should have the right to exist in public without comment” (2015, para. 13). None of us can assume that we know which terms a person with a specific impairment prefers. Even two people with the same impairment might want to be called different terms.

Just because somebody has a diagnosis does not mean that they will identify with the diagnosis, or even identify as disabled at all! The same label might mean vastly different things to two people. Rebecca Monteleone and Rachel Forrester-Jones (2017) interviewed fifteen British people labeled with intellectual disability. Some research participants had created their own definition of intellectual disability related in part to how others had treated them, and affirmed stigma surrounding intellectual disability. Monteleone and Forrester-Jones explained, “Identification of disability primarily relied on physical or tangible experiences of disability. The experience of disability in oneself was often accompanied by self-degradation or feelings of injustice, and the judgement of others played a role in perceptions” (Monteleone & Forrester-Jones, 2017, p. 308). They also found that some people with intellectual disability were unfamiliar with common disability terminology and uncomfortable talking about disability. The authors called for more accessible language access.

Dan Barry investigated a group of mistreated men. The men had intellectual disabilities. They worked in a meat processing plant in Iowa. Barry wrote about what he found in the New York Times. He also talked about words surrounding intellectual disability in the United States. Barry explained that language about intellectual disability has shifted over time. He wrote,

By the 1950s, the accepted term had become mental retardation. … But no matter how well-intentioned, this term also devolved into a pejorative, posing a problem for groups and government agencies whose names included the r-word. And as people with intellectual disability moved out of institutions and took their rightful place in the community, they began to advocate for themselves—and to express their loathing for the word “retarded.” (Barry, 2016, paras. 16-17)

Disability language continues to change over time. What is acceptable in one era is frowned upon in the next. Lawrence Carter-Long explained that over the course of his life, from the late 1960s to the present, “while my condition hasn’t changed, I’ve been called handicapped, handi-capable, disabled, differently-abled, and a person with a disability — the latter being an understandable attempt primarily by parents of disabled children to separate the disability from the person” (King, 2016). Despite the numerous different labels applied to his life, Carter-Long emphasizes that “my condition hasn’t changed” (King, 2016). What he means by this statement is that the view of him as a person, the view of his impairment, and the “proper” way to talk about disability changed rapidly. But the whole time that he was referred to by differing labels, Carter-Long still had the same impairment, cerebral palsy. He didn’t change, though the disability terminology changed, and in some ways, society’s view of him and his disability changed, too. Terms fluctuated from the offensive to the euphemism, from identity-first to person-first.

No Admittance. Photograph. Thomas James Caldwell. CC BY

 

Putting the Social Model of Disability into Practice

Indeed, the experiences that people have are shaped by their environment and their access to resources. Stephen J. MacDonald (2009) studied people with dyslexia in the United Kingdom. MacDonald looked at their experiences through a social model of disability lens. He surveyed 77 people with dyslexia. Then he conducted qualitative interviews. He interviewed 13 people from different socioeconomic status (p. 353). He found that schools and workplaces created disabling barriers for people with dyslexia. In other words, school and work can be inaccessible for some people with learning disabilities. In the UK, MacDonald learned that middle-class people with dyslexia accessed private tutoring and school tuition. Middle-class people with dyslexia had more flexible employment. They accessed assistive technology. The barriers caused more problems for working-class people with dyslexia because they did not have the same resources that middle-class people with dyslexia did (2009, p. 359). When investigating the experiences of people with dyslexia in schools, MacDonald notes that “literacy skills are often seen as a measurement of success in the culture of contemporary education” (p. 354). Western societies disable people with dyslexia by focusing on literacy and accessing literacy through traditional reading.

It’s important to learn the history, theories, and concepts of disability studies, but how do we put the social model of disability into practice for people with developmental disabilities? What do these concepts look like in practice? Even in environments that don’t view developmental disability from a social model perspective, such as schools, it is possible to apply disability studies to work with individuals. Focusing on inclusion means providing an education that works for a variety of students with and without disabilities. Using both existing models of successful inclusive schools and the precepts of neurodiversity, Thomas Armstrong puts the social model of disability into action by suggesting specific qualities that inclusive education should hold. First, inclusive classrooms that work for neurodivergent students, including students with developmental disabilities, should be welcoming to students from any “culture, race, gender, and sexual orientation,” disabled students with a variety of impairments, and nondisabled students (2012, p. 195). Rather than being either a general education classroom with mainstreamed students with disabilities or a special education classroom, teachers value students’ different backgrounds and emphasize that “there is no such thing as a normal student” (p. 197). Instead of including just one teacher, Armstrong recommends involving many caring educators and assistants, from multiple co-teachers with general and special education training to “tutors, aides, parent volunteers, specialized service personnel” and “the students themselves, engaging in teaching one another” (p. 199).

Young girl with Down’s syndrome [sic] playing with friends. Credit: Fiona Yaron-Field. CC BY

 Beyond explicitly welcoming all students and involving caring human relationships in learning, Armstrong speaks to the need for providing a multitude of activities and approaches to best engage students’ strengths. Armstrong explains, “The neurodiverse classroom celebrates and teaches about diversities of all kinds” (p. 197). He recommends working race, culture, gender, sexuality, and disability into curricula as well as infusing lessons with histories of famous neurodivergent people, involving family and community members with developmental, learning, and mental health disabilities in classwork, and stocking the classroom with materials that highlight people with developmental, learning, and mental health disabilities (p. 197), and using assistive technology such as communication devices, reading and writing software (p. 198). Armstrong suggests using Universal Design for Learning: “In the classroom, universal design refers to removing barriers to learning for kids with disabilities in ways that also enhance everyone’s ability to learn” (pp. 196-197). He profiles the William W. Henderson Inclusion Elementary School, from Massachusetts, which gives meaning to the term “presuming competence”:

Students study Shakespeare, for example, but in different ways. Some read with their eyes, some with their fingers; one interprets it with a drawing, while another performs a skit. A fifth-grade teacher engages her students in a lesson on the literary genre of memoir. Some will read bound books. Some will listen to an audiotape. Others will use a computer program that displays and speaks the words of a scanned book. Individual students have specific instructional enhancements added to help them master the material according to their unique gifts and needs. The speech therapist constructs a set of voice recordings and picture symbols for Betsaida (who is nonverbal) so she can communicate her needs more successfully. The biology teacher creates a chart listing ways that Joshua (who has mild cognitive delays) can take responsibility for certain activities in the lab. The art teacher keeps a box of varying grips with her so that students with fine motor difficulties can better use drawing and painting implements. (Armstrong, 2010, p. 192)

Schools have found ways to make students with developmental disability engaged in learning and included in the community. Some of these concepts come from disability rights advocates and disability studies.

 

Conclusion: Advocacy in the Future

The social model of disability and the neurodiversity paradigm can help show problems and discrimination. More importantly, the social model and neurodiversity can design solutions to make life better for people with developmental and learning disabilities. In his investigation of neurodiversity, educator and researcher Thomas Armstrong (2010) advocates for what he calls “niche construction”—what disability studies scholars would call removing societal barriers. Armstrong writes that for neurodivergent people, “instead of always having to adapt to a static, fixed, or ‘normal’ environment, it’s possible for them (and their caregivers) to alter the environment to match the needs of their own unique brains” (2010, p. 18).

Advocates with developmental disability have paved a path toward better tomorrows for all disabled people. When it comes to disability rights, there is still far to go for people with developmental disability. From inclusion and accessibility in the community and access to supports for a self-directed life to shifting language around disability and fighting violence against disabled people, there are many fights ahead. The self-advocacy movement has proven that change can be made and fights can be won.

Bride and groom on their wedding day, Down’s syndrome. Credit: Fiona Yaron-Field. CC BY