Read the Spanish version of this story in El Vocero.
Being blind requires Jon K. Cauchi to encounter his share of
assumptions.
“I run into discrimination on a daily basis,” says Cauchi, community education specialist for Disability Advocates of Kent County and a stand-up comedian in his spare time.
“When we go out to eat, they will ask (my wife) what I will have for dinner, or recently, I was at a doctor’s office and was asked, ‘Does my caretaker need to sign for me?’ And they had my wife listed as my caretaker. She’s not my caretaker in any sense, but they just assumed because I had a disability, that (woman) who handled the phone call for me one time was my caretaker and not my wife.”
Fortunately, there is a more humane way to interact respectfully with people with disabilities. People First Language (PFL) has ushered in much-needed reform. PFL puts the person before the disability. It describes what disability the person has, not what a person is, leading people to understand how to courteously interact with people with disabilities.
It’s a nuanced distinction that refuses to corral people with disabilities using terms that imply a limited capacity.
Seeing the whole person
Society is still soaked with ableist language, which is any word or phrase that devalues people with disabilities because it erroneously implies they are abnormal.
“Language has power. Words have power. The movement of Persons First Language is simply seeing the person as more than just a disability,” says Cauchi. “I myself am legally blind, but then there’s a lot more to me than just being a blind person.”
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This is a picture of Leatrice Fullerton, a Black woman with short black hair wearing dangling silver earrings, a snake-skin printed blouse, and a cream jacket.Leatrice Fullerton,
advocacy and community education director for Disability Network Southwest Michigan, says the first step to embracing PFL is being confident and comfortable enough to intermingle with people with disabilities.
“Oftentimes, one of the most disrespectful forms of communication to people with disabilities is actually not speaking to them,” says Fullerton, who is blind. “People automatically make the assumption that I was not able to understand what you are trying to get across, or maybe they speak slower or maybe they speak louder.”
Rick Diamond, Disability Network Lakeshore’s director of operations, recalls an exasperating time when he went out to eat with a friend who is visually impaired.
“When it came time to order, the waiter asked me what my friend wanted to eat for dinner instead of simply talking to him,” recalls Diamond. “When it came time to settle the bill, the waiter handed me the tab without hesitation. Before dinner, my friend told me he would be paying for our meal, yet the waiter assumed I would have the money since I didn’t have a visible disability.
“Don’t assume the person with a visible disability can’t speak for themselves, don’t assume the person with a visible disability can’t afford to pay for a meal, and try not to only direct the conversation towards someone without a visible disability.”
‘People want to learn’
“It's also important to give others grace,” adds Stacey Trowbridge, director of community development for Disability Network Lakeshore. “If someone says the wrong thing or uses identity-first language when you’d prefer Person First Language, kindly correct them without making them feel bad for using the wrong terminology. People want to learn. Help them.”
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Stacey Trowbridge is director of community development for Disability Network Lakeshore.
Words are not the only way people with disabilities run into well-intentioned conduct that should instead be deep-sixed.
“I once had a coworker who used a wheelchair. I can’t tell you the number of times someone would just grab her wheelchair and start pushing without asking for her consent,” recalls Trowbridge. “Some would even use the handlebars of her wheelchair as a resting place for their hands. While the thought to help push might be nice, someone who uses a wheelchair considers it an extension of their body. Ask before touching someone’s wheelchair.”
PFL is born out of social reforms launched in the late 1980s and 1990s that worked to extricate once-embedded language that pejoratively described persons with disabilities. A key example is instead of referring to them as disabled, handicapped, or crippled, PFL urges people to instead say “person with a disability.”
“The behavior and language is problematic when you’ve been corrected and choose to do nothing about it,” says Fullerton. “At that point, it’s really about choices.”
A truer depiction
Cauchi says there are misconceptions in the disability community on the history of the word "handicap." It may refer to an old game where odds are balanced so players have an equitable chance of winning. However, some see it as a reference to "cap in hand" referring to those with disabilities seeking handouts.
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Rick Diamond is Disability Network Lakeshore's director of operations.
“An analogy would be: imagine you’re alone with your TV remote in your hands and you pick up that remote and I tell you that remote is disabled,” says Cauchi. “Is that remote going to work? Often not, because we associate the word ‘disable’ with ‘does not work.’
“Now, if I tell you that remote has a disability, you might look at it and see my dog chewed off the ‘5’ button. Can you still use that remote? Yep. Can you still get channel 55? Sure you can. You’re just going to have some additional barriers to go about it a different way.”
“Rather than saying, ‘My paralyzed friend James is wheelchair bound,’ you would say, ‘My friend James, who is paralyzed and is a wheelchair user/uses a wheelchair,’” says Brad Hastings,
advocacy and American with Disabilities coordinator for Disability Network West Michigan. “It is important to note that most times it is not necessary to mention someone’s disability unless you are talking about something that is directly related to their disability. Most times, you can refer to anyone by using their name.”
Other salient examples of language of the past versus contemporary PFL include:
Past: someone is a handicapped or a crippled person;
present: person with a disability.
Past: handicapped bathroom/parking;
present, accessible bathroom/parking.
Past: wheelchair bound;
present: wheelchair user or uses a wheelchair.
Past: the blind;
present: people who are blind or visually impaired.
Past: retarded/slow;
present: person with a cognitive or intellectual disability.
Cauchi breaks down PFL to an even more fundamental technique he calls “the ask method.”
“As much as I love Persons First Language, I do think there’s even a better method out there,” he says. “Persons First Language is a vehicle people should use, but if somebody wants to know the best way of interacting and addressing a person with a disability, then simply use the ask method. Ask me how I’d like to be addressed. I don’t want to be addressed as the blind person. I don’t want to necessarily be addressed as the person who is blind. I’d rather be addressed simply as Jon. That’s how I truly feel is the best way to interact with a person with a disability.”
Not universally accepted
PFL is not monolithic in all communities, specifically Deaf and autism spectrum disorder communities, and that’s all right, according to Hastings.
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Brad Hastings is advocacy and American with Disabilities coordinator for Disability Network West Michigan.“Some people place more recognition on the ways in which their disability shapes their lives and very much view it as a core part of their identity,” Hastings says. “Some folks may prefer identity first language and may prefer to say that they are disabled, rather than a person with a disability. Some folks say that their disability is something that impacts their life at every moment and it is not something they bring ‘with’ them. This is most common in the Deaf and autism communities, who may prefer to say that they are a deaf person or an autistic person.
“As with race, gender identity, sexual orientation, and religion, it is best to ask each individual with disabilities what their preferred terms are.”
Cauchi says it’s important to understand those who are deaf and those who are autistic may consider themselves in one of two groups of people that are distinctively different.
“When it comes to individuals who are deaf, there are really two categories,” says Cauchi. Capital “D” deaf are of Deaf culture, and ASL (American Sign Language) is their language and deafness is their community. They see deafness as an identifier of who they are and often times, that is how they will identify themselves. Those who are lower case “d” see themselves as having a hearing impairment, or ASL might not be their primary form of communication. They are more likely to consider cochlear implants and be more part of the hearing community.”
“When it comes to individuals of the autism spectrum, there are some who see themselves as a person of autism, and there are also groups of individuals who see themselves as autistic people and, due to them having autism, their brains function very differently than the rest of the community, and it has a significant effect on their identity.”
Effects of COVID-19
The COVID-19 pandemic has had a disparate impact on people with disabilities. Those who relied on public transportation and other services found themselves increasingly isolated, and people with compromised immune systems still feel going out in public is a risk, especially when it comes to balancing their health with staying gainfully employed, according to Hastings.
“People with disabilities were more likely to lose employment over the pandemic,” he says. “People with disabilities are also more likely to live in congregate settings that have higher rates of transmission of COVID-19, one of the many reasons that the Independent Living movement seeks to deinstitutionalize people with disabilities and support people living in their own homes.
“Local public health guidance may not be produced in accessible formats for people with disabilities, even though it is required by the ADA. In some ways, such as an increased ability for and recognition of remote work, barriers to employment could be reduced, but without the enforcement or corresponding case law to support remote work as an accommodation, people with disabilities may not fully realize the benefits of the increased flexibility in digital work environments.”
“With COVID specifically, we heard a lot in the news of people with pre-existing conditions, and that in itself is a Person First Language,” adds Cauchi. “Who are these people with pre-existing conditions? Oftentimes they are people with disabilities. During the pandemic, there has been a lot more striving in favor of DEI (diversity, equity and inclusion) talk. And I think that has spurred more conversation related to Persons First Language.”
This article is a part of the year-long series Disability Inclusion exploring the state of West Michigan’s growing disability community. The series is made possible through a partnership with Centers for Independent Living organizations across West Michigan.