3.3: 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.

Language around developmental disability has changed over time, but offensive terminology remains

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.