Disability and Variability
Understanding disability from this theoretical position shifts the focus from individual pathology to the social experience of individuals. Critical Disability Studies arose from activism that recognizes that having a collective identity can help fight discrimination and oppression. The social model does not presume that the experience of disability is a single or uniform experience. The social model also does not assume that the individual characteristics of people experiencing disability are the same. It acknowledges that many disabilities are invisible and that accessibility support friction can exist. Internationally, there is a growing disability movement, and this movement embraces a disability identity that is positive. However, it is important to recognize that each individual will have their own personal connection to their disability and how one chooses to identify has to do with personal preference and how they have navigated systems and institutions that have often excluded them from participating equally.
Making more visible the tenacity required to navigate systems and institutions that often exclude participation challenges the dominant stereotype about disability we discussed earlier. It is important for educators to develop an understanding of disability that is focused on self-worth and pride, and to ensure positive reflections that welcome, engage, and embrace the diversity of disability. This makes visible a conscious shift from accommodating to normalizing disability.
The term diversity, in the context of this module and course, is used to indicate not only that variability is present, but that this variability (in backgrounds, orientations, and identities that may be different from one’s own) is genuinely welcomed, appreciated, and valued. Diversity can be understood through this definition from the Oxford language dictionary, eloquently broken down and interpreted by Dyslexia Bytes.
The importance of visibility is also characterized by the individuals who share their views in this mini-documentary. The mini-documentary profiles the reasons why these individuals prefer to use particular language to describe their disability. Specifically, this video highlights the debate over person-first versus identity-first language.
Hosted by Laura Bain, In Focus covers some of the biggest controversies surrounding disability language with an expert panel that includes Michelle McQuigge of The Canadian Press and journalist, writer, and activist Andrew Pulrang.
In Focus (Transcript for the entire segement)
WOMAN 1: I describe my disability to people by telling them that I am visually impaired.
MAN 1: When people ask me what my disability, I tend to tell them that I'm totally blind.
MAN 2: I'm autistic, and I also say that I am neuro-divergent.
WOMAN 2: I am a person with a physical disability.
WOMAN 1: I tell people that I am a person with low vision because I want to identify as a person as me first.
MAN 2: I prefer identity-first language because, yeah, that's what an overwhelming majority of the autistic community prefers.
MAN 1: My personal preference with person-first or disability-first isn't super set in stone.
WOMAN 2: I've always preferred person-first.
MAN 2: Differently abled, of course. People can't stand-- a lot people just can't stand that term.
WOMAN 1: Disabled and handicapped really, really, really, really make me cringe every time I hear those two words.
I-- MAN 1: Think special needs probably makes me cringe too.
WOMAN 1: When people say I'm disabled, I find I cringe at that because I'm capable.
MAN 2: A lot of autistic people really do not like the term autism spectrum disorder because of the pathologizing nature of that.
WOMAN 2: I don't need you to walk around on eggshells to address me. I'm a person with a disability. I have a physical disability, and that's that.
LAURA BAIN: I'm Laura Bain, and today, we're talking about language and disability.
MELISSA KEITH: Deep conversations, heartfelt stories, and tough relevant issues all examined through a disability lens. This is In Focus.
LAURA BAIN: Emily Ladau is a disability rights activist, speaker, podcast host, and author living in Long Island, New York. Her new book, Demystifying Disability, What to Know, What to Say, and How to be an Ally, is available now for pre-order. Andrew Pulrang is a freelance writer, speaker, diversity and inclusion contributor to Forbes magazine and co-coordinator of the #CripTheVote Twitter campaign. He's based in Plattsburgh, New York. They're each joining me now to dig into our topic of language and disability. Emily, Andrew, thank you so much for joining me.
ANDREW PULRANG: Thank you.
EMILY LADAU: Thanks for having us.
LAURA BAIN: I want to start us off with one of the most common debates when it comes to language and disability, and that's the use of person-first versus identity-first language. So if I was using person-first language, I might say that I'm a reporter with a disability, whereas if I was using identity-first language, I might say that I'm a disabled reporter. Andrew, I'm wondering if you can give us a bit of background on these two ways of speaking about disability.
ANDREW PULRANG: There's actually a lot of debate, not only about which one to use, but the origins of each one, what they're each supposed to do versus what they-- how people actually take them. There's one school of thought that says that person-first was developed or promoted by non-disabled people who had good intentions but fundamentally misunderstand some things about disability, where there's another interpretation that says it actually it was sort of come up by disabled people in the disability rights movement just at an earlier time and that preferences have evolved. I'm not even sure what the total right answer to that is. I don't know. Maybe Emily has some insight on that.
EMILY LADAU: So back in the early days of burgeoning disability rights movements, there was a big focus on emphasizing personhood over the dehumanization of disability, and this was especially so for people with intellectual disabilities, who felt that they were being misjudged and mischaracterized as less than whole people simply because they had intellectual disabilities. And so in an effort to emphasize that they are, in fact, people like anyone else, there was a concentrated effort to linguistically separate disability from the person, and that's a strong origin point for the use of person-first language. There's been a divide because some people feel that person-first language is dehumanizing because it relies on the assumption that you are less than a whole person if you identify as a person with a disability and you're separating disability from yourself. So that's where identity-first language originates from, people thinking that saying disabled person is a source of empowerment. And it absolutely is a source of empowerment, but for many other people, person-first language is a source of empowerment. And so I think that we need to recognize that there's no right or wrong answer to the types of language that we use. It's really a matter of personal preference, and we don't reserve the right to tell anyone that their language is wrong.
LAURA BAIN: That's a really good point. Now person-first language is kind of the gold standard used by many professionals, such as professionals in health care and teachers, and it's also used by many organizations that serve people with disabilities. A lot of these professionals don't themselves have a disability. Andrew, I'm wondering if a shift towards identity-first language by these professionals would be preferable or if that's best used for self-identification and use within the community.
ANDREW PULRANG: I think that what I would suggest is that organizations and anybody presenting themselves as experts to educate others should shift from saying person-first is the way to go. I would say the shift should be to shift a dual use and to shift into explaining to people that there are different reasons to use each one and that perhaps we are in the middle point of an evolution into something else. And that's where I think organizations and trainers can help a little bit by saying, all right, here's the deal. It's a controversy. It's not 100% agreement. It's not ideal, but there it is. Understand both sides. LAURA BAIN: For sure. Now off the top of the show, we heard some voices from across Canada, people mentioning words and terms that really rubbed them the wrong way. Emily, I'm wondering if there's any terminology around disability that just gets under your skin.
EMILY LADAU: I find it a very tough question to talk about disability terminology that I don't like because I think it feeds directly into the conversation of personal preference, so I passionately dislike things like differently-abled, and physically challenged, and handi-capable, and especially special needs. That is my biggest, biggest pet peeve. But at the same time, I do know disabled people who actually prefer some of those terms, and so I've come to have my own personal reckoning and realize that if it's a disabled person who prefers that terminology, I will use it specifically in reference to them.
ANDREW PULRANG: I think those terms are an effort to sort of spiff up being disabled as if just being disabled is grubby, right? You have to polish it up, and put flowers around it, and make it happy, which is not a bad intention on its own, but it's a little screwy. And, honestly, I think when people are debating whether to use those terms, one thing that you have-- they have to think about and contend with is that the sheer number of disabled people who not only dislike those terms but have a gut reaction of disgust, or embarrassment, or rolling your eyes.
LAURA BAIN: Yeah, I think my own language pet peeve is living with language, like saying living with sight loss. I don't necessarily feel offended by it, but I do kind of feel like it's trying to be overly positive, like saying, hey, you have a disability, but you're still out there living life.
EMILY LADAU: Absolutely. And I also think that we need to acknowledge that both Andrew and I are both physically disabled, and we're both white. And so we come from very specific ways of thinking about our disability. Other groups of disabled people will have other preferences.
LAURA BAIN: Absolutely. I want to shift gears a little bit and talk about disability as a metaphor, so this is things like blind to the truth, falling on deaf ears, or one I've heard a lot this last year is crippling job losses. Emily, when people use these metaphors, they're not typically thinking about disability, but I'm wondering if these metaphors are still stigmatizing.
EMILY LADAU: I find myself grappling a lot with language that relies on disability to make a point, and while I understand that the vast majority of people who say something like, oh, she's just using that as a crutch or, oh, she's totally blind to what's right in front of her, they're using it not with ill intent. But at the same time, there's a subconscious layer there that shows that we've been socialized to understand disability as a negative. If we can reframe, and stop using those terms, and instead just find other language of which there is plenty to express the same point, then I think we can begin that, even if it's subconscious or unconscious, shift away from having a more negative understanding of disability. But right now, because that negative framing is our baseline, using terms like crippling debt is still very acceptable, and so if we can just begin to flip the script, I think that will help our understanding and acceptance of disability as a whole.
LAURA BAIN: Definitely. Well, this has been a very interesting conversation. Unfortunately, we have to leave it there. I want to thank you both so much for joining me.
EMILY LADAU: Thank you.
ANDREW PULRANG: Thank you very much. It's been great. It's been great.
MELISSA KEITH: Coming up, Krip Hop Nation is reclaiming disability language.
WHEELCHAIR SPORTS CAMP: (RAPPING) Lord knows where I'm at, and it's hard out here for a gimp.
MELISSA KEITH: In Focus will return. You're watching In Focus.
LAURA BAIN: For artists with disabilities, experiences of ableism are all too common. For over a decade, a group founded in the US has been working to change things for the better. They're called Krip Hop Nation. That's Krip with a K. Here's their story.
LEROY F. MOORE JR: Drop that beat, sucka. Yeah.
KEITH JONES: OK, wait a minute.
LEROY F. MOORE JR: Yeah, come on.
KEITH JONES: Wait a minute.
LEROY F. MOORE JR: Krip Hop Nation is an international network of musicians, especially hip hop artists, and other artists. It's not only musicians. It's artists, poets. We've been around for 12 years, and we have chapters all over the world.
LAURA BAIN: Leroy F. Moore Junior is a co-founder of Krip Hop Nation.
LEROY F. MOORE JR: It's not open to everybody. You have to be open to be political. (RAPPING) And I'm barely getting sleep. Life on [inaudible]. (SPEAKING) We were seen, and this is international. The largest [inaudible] hip hop artists were saying the same story that they connected in music [inaudible] and industries said that were not marketable.
LAURA BAIN: At the same time, some non-disabled hip hop artists were appropriating disability language, particularly in the hyphy subgenre.
LEROY F. MOORE JR: The hyphy movement took disability lingo and really into the movement but did not make disabled hip hop artists. So they have the song about the little yellow bus. They have the song "Let's Get Retarded." That was Black Eyed Peas. But the hyphy movement took on that term retarded. You look back and think, no, you can't take our lingo and make millions on it and not include people with disabilities. (RAPPING) I'm the Black Pitbull. [inaudible] US Army, got shot by the LAPD. But you can't rid of me.
EMILY LADAU: Leroy and co-founder Keith Jones, both of whom have cerebral palsy, connect and promote Krip Hop Nation members through social media, forums, presentations, and performances.
LEROY F. MOORE JR: We used our art as an activist tool to educate the general public but also to re-educate the music industry about disability and about the history of disabled musicians from the blues all the way up to hip hop.
LAURA BAIN: The name Krip Hop is also a reclamation of disability history.
LEROY F. MOORE JR: The Crips, the gang in LA, had a disabled member, so it's like, oh, we just call you crippled. And then it's like, oh, we'll call you Crip. So, really, the name of the game came from disability lingo, oppressive disability lingo, so we wanted to take back that word in hip hop, flip it in hip hop. You flip the negative into an educational tool. So that's what Krip Hop did to Crip, and we wanted it to have a K.
WHEELCHAIR SPORTS CAMP: (RAPPING) Stairway to heaven, so tell me how the hell we going to get it.
LAURA BAIN: Krip Hop Nation artists are reclaiming words like Krip as a way of flipping the script. Like the group Wheelchair Sports Camp fronted by Kayln Heffernan.
WHEELCHAIR SPORTS CAMP: (RAPPING) Lord knows where I'm at, and it's hard out here for a gimp.
TONI HICKMAN: (SINGING) And I hope you don't let this world put your fire, put your fire out. Wait a minute.
LAURA BAIN: And Krip Hop Nation artist Toni Hickman.
LEROY F. MOORE JR: Her first CD was called "Crippled Pretty,"
TONI HICKMAN: (SINGING) Please don't be a people-pleaser.
LAURA BAIN: Her music video for the song "People Pleaser" features people with disabilities and carries a strong empowerment message.
TONI HICKMAN: (SINGING) People-pleaser.
WOMAN 3: (SINGING) Still, I rise from the ashes. I'm a rising phoenix. I rise above you.
LAURA BAIN: In 2020, Krip Hop Nation artists, including Toni Hickman and Keith Jones, wrote and performed the theme song for Rising Phoenix, a Netflix documentary about paralympians.
LEROY F. MOORE JR: We did that song and that-- and now we're going to Tokyo to perform that song at the Paralympics.
MAN 3: (RAPPING) On your mark, get set, the pistol pop. I'm out the blocks. I hit the ground running. No legs. They dazed. Gazelle. New form of human being born.
LEROY F. MOORE JR: So we got some good things coming out.
MAN 3: (RAPPING) I do it from the lead position. Watch how I keep it moving. Using your lack of intuition.
MELISSA KEITH: Coming up, disability language in the Canadian news media. In Focus will return. This is In Focus.
LAURA BAIN: Michelle McQuigge is the weekend assistant news editor with the Canadian Press. Prior to that, she worked as a reporter with a focus on accessibility and disability issues when possible. Michelle serves as board chair with Balance for Blind Adults in Toronto, and she's a regular contributor on AMI audio. She's joining me from her home in Toronto. Michelle, thanks so much for joining me.
MICHELLE MCQUIGGE: My pleasure. Thanks for having me.
LAURA BAIN: Michelle, how have you noticed language around disability changing during your time as a journalist?
MICHELLE MCQUIGGE: When I first started in 2006, it's the kind of issue that was really never discussed at all. I think it started to shift around the time that so many disability self-advocates began making their voices heard largely through social media, and that's when we started to see more debate around things like identity-first versus person-first language. That's when we really started hearing more of the pushback on things that some of us already knew were problematic, like confined to a wheelchair, all those things that we used to see in news reports. That's when we started hearing a real reclamation of words like disabled and crip, so that's all been in the past, I want to say, five to eight years or so. And it's been really interesting to watch it evolve, and it definitely informed my work when I was still reporting.
LAURA BAIN: What kind of job do you think that the Canadian news media is doing when it comes to portrayal of disability and use of language?
MICHELLE MCQUIGGE: I don't think it's any media landscape's strong suit if we're being honest. I don't think this is unique to Canada. Discussion of disability issues, though, hasn't been as prevalent here, so perhaps the Canadian media is a little further behind than elsewhere. But all the time we see a mix now of things. There was a time when I suspect all the coverage would have been uniformly problematic when you would have had an out-of-date terms in use, or lots of implications around suffering, lots of positioning people as inspiration, et cetera, and that certainly still exists in Canada and beyond. But I think there is increasingly a bit more awareness around that sort of thing, and I have definitely seen more stories from more reporters that seem to make a concerted effort on that front.
LAURA BAIN: Well, this is very true, and, I mean, language is also not clear cut. And it's a debate that I find really interesting and I suspect that you also find really interesting.
MICHELLE MCQUIGGE: [laughs] Word nerds unite. Yeah, definitely.
LAURA BAIN: Exactly. So what kind of changes would you like to see when it comes to how the Canadian news media portrays disability?
MICHELLE MCQUIGGE: I'd like to see it less siloed. A lot of disability coverage tends to be sort of off into another corner, and we talk about disability stories, whereas disability runs through all facets of society, and there's so much intersectionality with a whole host of issues. We know this when it comes to race, when it comes to sexual orientation, sexual identity. Perhaps we don't know it as well as we ought, but I feel like that message has been taken to heart on those issues in ways it hasn't when it comes to disability coverage. So I would like to see better integration, I think, into the rest of the conversation about life in Canada because disability is part of life for a surprising number of people. Most don't realize how many in this population are disabled, and treating it as its own discrete entity I don't think does anyone any favours.
LAURA BAIN: Absolutely. I totally agree. Michelle, this has been a great discussion. Unfortunately, we have to leave it there. I want to thank you so much for joining me.
MICHELLE MCQUIGGE: My pleasure. Thank you, again, for having me.
LAURA BAIN: As we've heard from our guests and stories, the language we use around disability matters. Language is complex, nuanced, and ever-evolving. If you'd like to weigh in or if you have an issue you'd like us to cover, we'd like to hear from you. Email us at feedback@ami.ca. Thanks for joining us.
MELISSA KEITH: Host, Laura Bain. Producer, Wendy Purves. Videographer, Andrew Pickup. Editors, Maryam Bakhtiar, Andrew Pickup. Narrator, Melissa Keith. Integrated described video specialist, Em Williams. Audio post, Mark Phoenix. Graphics, Andrew Antonello. Opening theme package composed by Matthew Monias for Mattmac Music. Senior producer, Michelle Dudas. President and CEO, David Errington.
In Focus - Runtime 10:41 min
https://youtu.be/qGVOABlxtRU
Having heard first-person perspectives on the issue of language and identity, what are ways you might create a welcoming and inclusive environment where personal preference around use of language is honoured to encourage greater engagement?
Critiques of the Social Model
It is important to note that some have critiqued binary models of disability. The complexity of disability – as a physical, psychological, social, and cultural phenomenon – isn’t fully contained in either the social or medical models. While the medical model is most commonly the object of critique from the disability community, the still-developing social model is not without its own flaws. Scholars have pointed out that the social model’s insistence on separating disability from impairment denies the lived experience of individuals and the role their impairments play in their daily lives. The social model has also been critiqued for its lack of intersectional voices. In order to foster engagement, we need to not only provide multiple means of engagement that recruit interest but also reinforce equitable learning outcomes that come from anti-oppressive and antiracist practice.
Newer models of disability attempt to respond to these critiques. For example, the social-relational model recentres the role of disability in an individual’s life, proposing that disability is a product of relationships between disabled and non-disabled people and the social power dynamic that results. To learn more about how this power dynamic might play out, read the article “Breaking a Disabled Limb” by Isaac Stein, which describes a first-person account and exemplifies these social-relational structures.
Matching activityPerspectives of Disability
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