Discussing Disability: ‘Nothing About Us Without Us’

Written by Malka Goldberg on . Posted in Features

What is the appropriate language to use when talking about disability, and why does it matter? This question is particularly relevant to the Jewish community in February, as communities around the world observe Jewish Disability Awareness, Acceptance, and Inclusion Month (JDAIM).

There are three common constructs for discussing disability: person-first language (e.g., “person with a disability”), identity-first language (“disabled person”), and euphemisms (“special needs,” “differently abled”).

In a recent webinar titled “What’s in a Name? Understanding the Connotations of Disability-Related Language,” Rabbi Ruti Regan delved into these different constructs and why word choice matters. She is the rabbinic disability scholar in residence at Matan, an organization that educates Jewish leaders, educators, and communities, empowering them to create learning environments supportive of diverse learners.

“Disability-related language can get really loaded, and can get really conflict-ridden and anxiety-ridden, because people often have very intense opinions on disability-related language and what the correct language is, and they have very intense opinions in opposite directions,” said Rabbi Regan, who self-identifies as a disabled disability activist.

Every single person interviewed for this story emphasized the importance of respecting individual preference. When speaking to or about an individual, the answer is clear: Ask them which terminology they prefer.

“You can never go wrong with ATP [ask the person],” said Jennifer Laszlo Mizrahi, founder and president of RespectAbility. Mizrahi is dyslexic and has ADHD, and knows what it means to parent a child with multiple disabilities.

There was also consensus that several specific terms are no longer acceptable. These include “wheelchair-bound,” “confined to a wheelchair,” and “suffers from” or is “afflicted with” X condition or disease.

“I care a lot more about ‘lives with’ or ‘has’ instead of ‘suffers with,’ rather than ‘person with disability’ versus ‘disabled person,’” Mizrahi said. “One of my pet peeves is describing someone as suffering from a disability, rather than living with it. They may be having a fantastic life.”

When it comes to discussing disability in general or in reference to a group of people, however, the answer is not so straightforward.

 

Person First or Identity First?

Person-first language (PFL) is currently enshrined in the American lexicon thanks to the Americans with Disabilities Act (ADA) of 1990. As the ADA was drafted, disability rights activists pushed for the act to use the person-first construct of “people with disabilities” as part of an effort to move away from negative terms such as “handicapped” and “crippled.” There was some pushback against person-first language at the time – The National Federation of the Blind (NFB) issued a resolution in 1993 condemning both PFL and euphemisms — and opposition to PFL has increased significantly since the ADA was passed.

“We use identity-first language [IFL] to describe other common identities outside the disability space,” said Arielle Silverman, founder of Disability Wisdom Consulting. Silverman, who is blind from birth, has a doctorate in social psychology and over a decade of experience researching the disability experience. “We don’t say we are ‘people with Jewishness’; we are ‘Jews’ or ‘Jewish people.’ I’m not a person with femaleness or a person with whiteness either. By the same token, my disability identity shouldn’t be treated any differently than any of my other identities.”

“Further, I use identity-first language because many communities prefer it as a marker of pride, particularly the blind, Deaf, and autistic communities,” she said.

“We in the autistic community have a strong preference for IFL, in part because of the long negative history of people trying to cure or recover us,” explained Ari Ne’eman, past president and co-founder of the Autistic Self-Advocacy Network. “We do not believe autism is incidental to who are we as people, but rather it is part and parcel of our larger identity.”

While this is an increasingly common perspective among disability self-advocates, it is by no means universal. Though the autism community generally prefers IFL, Kenny Kalman prefers PFL.

“My preferred language is person with disabilities since it shows that I am a person first,” he said. Kalman, a member of Ohev Sholom – The National Synagogue, has multiple disabilities including autism and Stickler syndrome. He works for the U.S. Department of Education and previously interned at several disability organizations. “Since I have multiple disabilities and I want to be seen for who I am, I agree most with people-first language.”

Ne’eman, who is currently writing a book about the history of disability in the U.S., distinguished between general conversations about disability and references to specific groups.

“When talking about the disability community as a whole, I think you can use either [PFL or IFL], since there are folks with both preferences. But when you’re talking about a specific group, you should follow the communal norm. Communities have preferences and that should be respected.”

Both RespectAbility and Sulam use PFL to emphasize what people can do, rather than focus on what they can’t. “We don’t view people as their disabilities. We know that every person, even with a disability, is an individual,” said Lianne Heller, executive director of Sulam. Housed within Berman Hebrew Academy, Sulam provides students in grades K-12 with highly individualized educational programs in a unique combination of inclusion in general education classrooms and targeted instruction. “Everybody is different, everybody is unique in their own way. Their disability doesn’t put them into a box. By using ‘people first,’ we are acknowledging that they are individuals, before anything else.”

The Jewish Federation of Greater Washington tries to emphasize language that is “less about ability and more about accommodations,” according to Lisa Handelman, Federation’s community disability inclusion specialist. “It’s how we communicate respect, how we communicate welcoming, and it often has an emotional component to it,” she said.

 

#SayTheWord

Another argument in favor of IFL is that disability needs to be acknowledged and discussed to ensure disability is part of the conversation, and accessibility is embedded in the planning process for all community events and initiatives. To that end, disability activist Lawrence Carter-Long created the #SayTheWord social media campaign.

“If you can’t talk about something, it becomes more taboo, not less. If something is unspeakable, we can’t normalize it,” said Rabbi Regan. Her Matan webinar included a Harry Potter reference to support this: “As Dumbledore said, fear of a name increases fear of the thing itself.”

“The practical implications of the linguistic choices can trickle down to how a person is perceived and whether they feel able to show up as their authentic self, freely able to speak about disability,” said Rabbi Lauren Tuchman. Rabbi Tuchman is, to her knowledge, the first blind female rabbi. “I believe both identity-first and person-first language can enable authentic expression of oneself around disability identity, but I do think that many well-meaning folks use person-first out of a laudable desire to be inclusive and don’t realize that it can sometimes feel invalidating.”

While Sulam generally uses PFL, they also encourage students to “own their disabilities,” Heller said. “There’s a lot of stigma around disability. Admitting a disability can be hard for families. We found that when students can acknowledge, accept, and embrace their disabilities, they become far better advocates. They are able to better explain what their needs and rights are, and they do better overall.”

The disability rights movement has adopted “nothing about us without us” — meaning that any conversations about disability and related topics must include disabled people — as a rallying cry and call to action.

“People with disabilities need to be at the table, and we need to have power in this conversation,” said Rabbi Regan. “A bunch of non-disabled parents and professionals having meetings where they decide amongst themselves what to call us aren’t going to be able to get it right, for the same reason that bad things happen when groups of men make decisions about women. Disabled people need to have power much more than we need people to use officially sanctioned respectful language.”

 

‘I’ is for Inclusion

There may be no universal answer about “correct” disability terminology, but there are clear takeaways. First and foremost, respect individual and group preferences. Second, when in doubt, ask. Finally, language is important, especially as it can have implications for access and accommodations, but it is also a vehicle to the end-goals of inclusion and accessibility.

“The discussion of the appropriate term is an interesting and important academic discussion, but what is more important is that during JDAIM, we actually make concrete steps to include people with disabilities,” said Aaron Kaufman, who has cerebral palsy. He is the senior legislative associate focusing on disability and poverty issues at Jewish Federations of North America, but these comments reflect his personal perspective.

For community institutions, “Language is about accommodation needs vs. disability type,” Handelman said. “What can we as an environment and a community accommodate? The onus is on the environment to change, not on the individual to change.” Institutions don’t need to know someone’s diagnosis or specific disability to be inclusive, she explained, they just need to know what accommodations will enable the individual to fully participate.

“People can use the right language, but even if you use the language that is right for a particular person, but they don’t feel welcome in your communities, then this becomes an academic discussion," Kaufman said. "What’s most important is a sense of belonging.”

 By Malka Goldberg


 

 Malka Goldberg is managing editor of Kol HaBirah.