Language is a tool. It can make our worlds bigger or make them smaller. It can be used to create connection or to cause harm. It can affirm or it can disparage.
When it comes to how we describe marginalized aspects of ourselves or others—things that are perceived as “not normal” by the mainstream—language matters a whole lot, because how we talk or write about ourselves and each other can either affirm the value of diversity and difference, or demean people who are different from the idealized norm.
“We are people, not diagnoses”: Using language to affirm agency and humanity
In the 1980s, the concept of “person-first language” developed among disability advocacy groups, although it wasn’t named right away using this term. For example, in 1983, the national People With AIDS movement was founded, holding at its center the radical “Denver Principles,” a document that opened with this phrase:
We condemn attempts to label us as “victims,” a term that implies defeat, and we are only occasionally “patients,” a term that implies passivity, helplessness, and dependence upon the care of others. We are “People With AIDS.”
The movement to use language in a way that allowed folks with disabilities and/or particular diagnoses to reclaim their agency, autonomy, and personhood in the face of stigma and dehumanization was—and is—incredibly powerful. It’s a big deal to affirm “I’m not a schizophrenic, I’m a person with schizophrenia,” or “I’m not confined to a wheelchair, I’m a person who uses a wheelchair” in a society that often only sees the condition, not the person behind it.
If folks had stuck with the worthy goal of focusing on the agency, personhood, and authority of the people being referred to, that would have been great. But that’s not what happened.
Person-first language: Putting words first, not people first
Over the last few decades, “person-first language” has become a linguistic rule, promoted as a carved-in-stone law of the land by those in professional spheres such as health care, social services, education, and government.
The rule is to put the word person first, before the disability or condition, in order to emphasize that those being referred to are people first, not just diagnoses or disabilities. For example, “people with disabilities,” instead of “disabled people.”
This is a perfectly lovely general tip: When in doubt, put the word person first, particularly when referring to people with disabilities. But identity is complex—way too complex for a rule like this to work without any exceptions.
A few years ago I received an email from someone who scolded me for writing “transgender people” in a recent piece. “The appropriate term is ‘people who identify as transgender,’” she informed me. I was stunned. Why in the name of all that’s holy was someone who clearly wasn’t trans and likely didn’t even know any trans people writing to me—a trans person—and telling me I was using the wrong language to refer to myself and my community?
Because #personfirstlanguage. This person had internalized the rule that you had to put the word person first, and she was on a crusade to make sure everyone else followed this rule, too.
What I didn’t know at the time was that my disabled friends experience these sorts of paternalistic and frankly dehumanizing comments and “corrections” from presumably well-meaning people every day. “You’re not a disabled person, you’re a person with a disability.” “You’re not autistic, you’re a person with autism spectrum disorder.”
When a language rule—which was created specifically to respect people’s agency and personhood—gets in the way of actually respecting the person in front of you, it’s time to ditch the rule.
Not everyone puts the word person first
Let’s get one thing clear: Everyone has the right to define themselves in whatever way feels best and most authentic to them. If someone wants to call herself a cripple, that’s her right, and it’s up to me to respect her choice—as well as finding out whether she wants me to refer to her that way too or not.
The truth is, not everyone puts the word person first when they refer to themselves. People generally talk about themselves as Black, not as people who are Black; as women, not as people who are female; as Muslim, not as people who practice Islam; as bisexual, not as people who identify as bisexual; as short, not as people of short stature.
Similarly, many people refer to themselves as disabled, not as people with disabilities; as blind, not as people who are blind; or as Deaf, not as people with deafness.
Complicating things even further is the fact that people with a certain trait in common often have completely different experiences of it—for example, some people identify as Deaf, are part of Deaf community, and don’t see deafness as an inherently negative thing, while other people experience being deaf or hard of hearing as something to be overcome or cured. The same diversity of experience is why the phrase “people who identify as transgender” is a terrible idea: not all of us identify as trans. Some of us do, but many of us just identify as women or men and consider our gender journey to simply be a none-of-your-business part of our medical file.
Some of the most outspoken critics of the person-first language rule are folks within the autism community. As Lydia X. Z. Brown has explained in a two-part piece:
In the autism community, many self-advocates and their allies prefer terminology such as “Autistic,” “Autistic person,” or “Autistic individual” because we understand autism as an inherent part of an individual’s identity. … I am Autistic. I am also East Asian, Chinese, U.S. American, a person of faith, leftist, and genderqueer. These are not qualities or conditions that I have. They are part of who I am. Being Autistic does not subtract from my value, worth, and dignity as a person.
Many people have pointed out that the practice of using language to separate a person from a trait of theirs implies that the trait is inherently negative. Although some people might feel that their disabilities are negative, many others don’t feel that way. In a piece titled “Why Person-First Language Doesn’t Always Put the Person First,” Emily Ladau explains:
Consider how person-first language intentionally separates a person from their disability. Although this supposedly acknowledges personhood, it also implies that “disability” or “disabled” are negative, derogatory words. In other words, disability is something society believes a person should try to dissociate from if they want to be considered a whole person. This makes it seem as though being disabled is something of which you should be ashamed. Person-first language essentially buys into the stigma it claims to be fighting.
Person-centered language: Value people more than language rules
Hopefully we can all agree that you generally shouldn’t use a disability, a condition, a diagnosis, or even an identity as the only way to describe a person. Terms like “the handicapped,” “a geriatric,” “the autistics,” “transgenders,” and “the blacks” dehumanize people by using an aspect of themselves as a stand-in for their personhood.
Hopefully we can also all agree that it’s best to avoid using stigmatizing or negative language to refer to aspects of a person. Terms like “suffering from autism,” “AIDS victim,” “bed-ridden,” “mentally ill,” and “hearing impaired” victimize people by painting them as suffering or inherently unwell when that may not be the case.
These are the things that person-first language set out to accomplish: don’t demean, dehumanize, or stigmatize people by way of the language you use to describe them.
It’s time to go back to that worthy goal, and not let a language tip that should never have become a hard-and-fast rule in the first place get in the way of treating each other with respect and care.
In the words of Emily Ladau:
Ultimately, the key is to ask, whenever possible, how a person chooses to identify, rather than making assumptions or imposing your own beliefs. Each person’s relationship to language and identity are deeply personal, and everyone’s identity choices are worthy of respect. … Being who you choose to be—who you are—is something no language rule should ever take away.
Let’s practice person-centered language instead of person-first language, and remind each other that the point is to put the actual person first—to remember that all people are people and should be treated as the first and foremost experts on themselves.
Addendum: But What Term Should I Use??
A lot of folks have responded to this piece by saying something along the lines of: “It’s all well and good to respect an individual person’s language choices, but how can I refer generally to a group of people who don’t all use the same words?”
The answer is that there’s no simple or quick fix. Instead of seeking the perfect phrase that will avoid offense, we have to be willing to explore what will create the most respect and care in any particular situation. Here are some best practices:
- Be clear: Sometimes we use broad language when more specific words would be better, and vice versa. For example, if your context is wheelchair-accessible ramps, you can say “people with limited mobility” rather than “disabled people.”
- Be creative: You don’t need to find a single word or term. You can say things like “autistic people and people with autism” and explain why you are doing so.
- Be humble: If you feel reactive, defensive, or anxious, explore your feelings and consider how you can work to fully respect folks who use different language than you do.
- Be respectful: Remember that the point is to care about the people you are referring to and honor their personhood and agency.
- Be curious: Consult different sources, particularly groups and organizations led by the folks you’re referring to, to see what language they use and why.
There is no one “correct” answer. The invitation of person-centered language is to value a caring and complicated approach rather than searching for a pat solution.
Want to learn more about how to fight ableism through your language choices? Check out this fabulous FAQ on ableist language and why it matters by Rachel Cohen-Rottenberg and this great round-up of ableist language pitfalls and alternatives and the accompanying explanation of how ableist language fits into the larger system of ableism from Lydia X. Z. Brown. And don’t miss this other great piece by Lydia X. Z. Brown: “Ableism Is Not ‘Bad Words.’ It’s Violence.”
*Note: I did not invent the term “person-centered language”; it was introduced to me a number of years ago by an autistic person who provided invaluable feedback on some inclusive language guidelines I had written.
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Radical Copyeditor 
I am wondering whether, in the interest of cautioning against turning a language tip into a hard-and-fast rule, a different hard-and-fast rule has been proffered: always let people determine for themselves what they must be called. Yet this is not hard-and-fast either, right? Sometimes it’s important to say what a person is even if that person is in denial or deluded about it. Arguably, it was important to be able to say that Nixon was a crook even though “crook” was not what Nixon preferred to be called. More generally, if some members of a group (“the autistic” or “people on the autism spectrum”) prefer to be called one way while other members prefer to be called another way, then we have no way to refer collectively to all members of the group. This has some advantages: encouraging us to treat each individual separately rather than lumping them all together is often a good thing. But it also tends to make speakers more often silent about the group itself (because they don’t know how to refer to it), and this can contribute to making them invisible, which is problematic.
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Meredith, the only hard-and-fast rule I’m proposing in this piece is to respect people, and to not demean, dehumanize, or stigmatize folks by way of the language you use to describe them. The whole point of this post is to help create space for nuance and variation of language to match the incredible complexity and diversity of people’s lived experiences—to reject hard-and-fast rules when it comes to language that describes identities, diagnoses, or traits.
When referring collectively to a group of people who vary in how they refer to themselves, it’s not impossible to use more nuanced language. For example, “gay” used to be used to refer to all non-straight people, but over time this wasn’t inclusive enough because although some women thought of themselves as gay, others used the term lesbian exclusively. So “gay and lesbian” became a way to refer to the whole group. Then it became necessary to include bisexual, and eventually it became a lengthening acronym. Some people find this incredibly annoying, but it’s a good example of how the mainstream has adapted to the fact that there is no one single word or term that is fully descriptive of the people being referred to.
Similarly, I personally understand “trans” as an inclusive word for all non-cisgender people, but not all of the folks who fall into that group use the word trans to describe themselves. So sometimes, depending on the context, I’ll say “trans people, non-binary folks, and people of trans experience” rather than just “trans people.” It’s just as simple to say “disabled people and people with disabilities” as Lydia X. Z. Brown, who I quote above, sometimes does. This may seem awkward, but when we are truly committed to using language to create justice instead of furthering oppression, we have to be willing to try on new and sometimes awkward things.
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That would be true if there was no consensus, but there is. Fully 63% of the Autistic community prefers ‘autistic person’ against just 11% who prefer ‘person with autism’, with the remaining 26% finding offence in neither. So if one follows the rule that one should use the majority preference language to refer to the entire group and unidentifiable individuals…
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63% isn’t even a consensus. It’s a heuristic to use ‘autistic person’ and you’d likely be right but it’s important to distinct between a consensus and a census of the majority.
In reality, everyone needs to accept that the first ‘attempt’ may not be correct. This goes for all labels, even for metals, tools, animals etc. A lot of the nomenclature is simply cultural. I’ve worked with mechanics who get upset if you call a pipe wrench an adjustable wrench. It’s a wrench which can be adjusted, but it is not rightly what they envision when you say ‘adjustable wrench’. Same for biologists or geneticists hearing the evolutionary argument ‘we evolved from x” when in fact, both x and us evolved from an unknown (or partially known) common ancestor.
Essentially, this is all pedantry which can be solved if you just trust your partners in discourse and activities do not hold malice in their hearts, and if they do see no value in engaging with that side of them. This isn’t something unique to individuals and their self image.
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Nobody wants to separate the thing from the person when they think it is a good thing.
And they wonder why I want laws making it illegal to talk about autism if you are not autistic.
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I’m an autistic woman professional (not, thank you very much, “a person with autism, femaleness, and professionalism”!) who has been speaking (at autism conferences and other disability conferences) against the unthinking social, professional, and — increasingly — legal requirements for “person-first” (so-called). Since I will be presenting on this subject again next week, at the annual national conference of the Autism Society of America, may I please have permission to add your piece (with full credit and source info) to my handouts file, and/or to add its citation to the bibliography I’m compiling to add to my handouts file in future years? I will also be using your eloquent and much-needed term “person-centered” when I speak (with credit to you, during my presentation — sadly, it’s too late to add this term into the current slides).
This will do much to counter the assertion (which is often thrown at disabled people, by people without disabilities) that no mainstream publication support exists for anything but “person-first language,” so-called (which I think of as “Pointing Fingers Language,” because anything and everything sounds like a horrible disease when it is “person-firsted.” My favorite audience example is to ask why, for instance, we do not usually refer to “a child with left-handedness” … and what it would mean, about our attitude toward that child or that neurological variant, if we did.)
Let me know, by the way, if you’d like a copy o& m6 own current slides and handout (perhaps for your files on this matter).
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I’m honored that my piece resonates with you as an expert in this area, Kate! Thank you so much for your kind words. You may absolutely use the piece as a resource as long as it’s credited and a link/URL is provided to my website.
I would be remiss if I didn’t say that I absolutely love the term “person-centered language” (and find it infinitely more clear and helpful than “identity first language,” even while I completely understand why the latter term came about), but I did not invent it myself. In fact, it was suggested to me by an autistic person who provided incredibly valuable feedback on an inclusive language resource I created five years ago or so. I wish I still had their name so I could credit them.
I love your example of “child with left-handedness” and Pointing Fingers Language. So fantastic!! Thanks for all you do, and I hope your presentation next week goes well! Keep on fighting the good fight.
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“the assertion… that no mainstream publication support exists for anything but “person-first language,”
There’s also Lisa Egan’s XOJane piece “I’m Not A “Person With a Disability”: I’m a Disabled Person”
http://www.xojane.com/issues/i-am-not-a-person-with-a-disability-i-am-a-disabled-person
As Lisa notes there: “No one has ever told me that I should describe myself as a “person with gayness” or a “person with womanliness.””
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Thank you so much for bringing forward Lisa Egan’s fabulous piece, David! It is awesome. Much appreciated.
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Nice piece! I appreciate the historical context about “People with AIDs”and how clearly you laid out the shift. I think one additional point is that the insistence of person first language has become more of an issue with the rise of the concept of disability pride and an intentional claiming of disability as a part of what shaped someone into the person they are today. And also that saying “disabled person” fits in nicely with the social model of disability–“I am disabled…. by stairs, fluorescent lights, thoughtlessness etc. …. disability is not a condition unique to me or something I have (as person with a disability would suggest) but created by broader society.” (Things that I’m sure would have made the piece too long but are interesting)
In my work as a disability community organizer, I’ve been reflecting on how tricky it is narratively to talk about yourself and the issues that affect your community when the mainstream and/or other side isn’t seeing you as a person or a valuable member of society. The People with AIDS movement was trying to solve that issue with person first language and it’s tricky. I cringe a little when I hear disabled people defend our right to health care by saying “I’m a contributing member of society, I have a job” as if your value disappears the instant you can’t hold a job. AND that narrative move of claiming your job does change the conversation and point out that up until that moment there’s a good chance the audience was assuming the person didn’t have a job or much of a life beyond their disability and medical needs. I’m always looking for the helpful reframing strategies that don’t require us to beg to be seen as worthy. This is not an issue unique to disability community by any means but common among all marginalized groups–(feel free to suggest writing I should go and read)!
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One thing to be aware of is that politics vary amongst different disability groups. People who have conditions which may or may not be considered to be disabling, like autism or Deafness, are more likely to prefer condition-first language. There is absolutely still a place for person first language, especially for those conditions which do not have an adjective. I have ME, I am a person with ME, I am absolutely not an “ME sufferer” or “ME victim”. I am also neurodivergent, part of which is about having Sensory Processing Disorder, so the phrasing goes both ways there. I have fibromyalgia, and while there is “fibromite”, it’s used as an affectionate joke between people with fibro, not as a word we can use with outsiders. So as well as asking people what terms they use, it is also worth finding out the politics of their particular community. Wheelchair user is generally considered the best term in that area, by the way.
As for the social model, depending on how you interpret it, it fits some conditions better than others. Society can accommodate me until it’s blue in the face, and while that really needs to happen and would be great, it wouldn’t stop me from being mostly bedbound and in chronic pain. A better interpretation of the social model that I’ve seen is that we are more disabled by society than by our medical conditions, not that we are not disabled by our medical conditions at all. The main thing people with ME need right now is biomedical research into a treatment and, if possible, a cure. Whereas a cure isn’t the point for many conditions, and indeed is sometimes so besides the point as to be an active insult, as with autism and other forms of neurodivergence.
As I mentioned in my comment (which seems to have been eaten?) on your recent style guide for language about trans people, a good way of describing us in general is “disabled and/or neurodivergent”. I’ve also seen “disabled or D/deaf”, depending on context.
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One exception is strokes, however. I have seen literature telling people they should call themselves ‘person who had a stroke’ rather ‘stroke victim’, which is fair enough, but they are clearly so focused on person-first language they have completely missed the far more positive ‘stroke survivor’ which obviously puts the name of the condition before the other noun.
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“Hopefully we can all agree that you generally shouldn’t use a disability, a condition, a diagnosis, or even an identity as the only way to describe a person. Terms like “the handicapped,” “an autistic,” “a geriatric,” “transgenders,” and “the blacks” dehumanize people by using an aspect of themselves as a stand-in for their personhood.”
Um, no. I call myself ‘an autistic’. There are plenty of autistic rights activists who call themselves ‘autistics’.
If calling me a woman isn’t automatically dehumanizing, neither is calling me an autistic.
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Fair enough, ettina. Thanks for this correction! Would “the autistics” be a good substitution, in terms of a better example of a disrespectful term?
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As a footnote, do you know the origin of “rule of thumb?”
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It’s thought to originate with carpentry and the use of one’s thumb as an approximate measurement. Some believe it originated as a law condoning spousal abuse but there’s no proof that this was ever more than an urban legend. Due to the negative association many have with it, however (which I only recently became aware of), I should probably edit this phrase out.
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Do you have any resources or sources about the type of person-centered approach you use here? Almost all of the links I am seeing through a quick google search use person-centered and person-first as the same type of approach, rather than separating them as you have here. I’m doing a short presentation on this topic soon.
Thank you.
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Something I came up with that people can use (and adapt as necessary):
Nouns are used on labels, adjectives to describe. So who’s labelling who when you insist on telling me I ‘have autism’ in response to my statement that I am autistic.
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Used a full stop instead of a question mark at the end. I blame my dyslexia: thank God I function as mild!
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Thanks for this piece, I just discovered your blog and I’m so grateful. Looking forward to further polishing my own radical copy editing/writing as a marketing professional.
In response to this piece, my mind goes to difficult situations where I’ve interacted with marginalised people who use/identify comfortably with terms I understand to be oppressive. i.e a trans women using the term ‘tranny’. In another more privileged direction, I’ve interacted with people who don’t identify with the term ‘cis’ despite being cis, and have heard members of oppressed group say “you don’t get to choose not to be cis”. So I guess my internal query is, how far does the agency of one’s identity go? And does language that marginalises an oppressed group supersede the desire of an individual in their expression of identity through language?
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Great question, Don! And thanks for your commitment to radical copyediting/writing!
My strong feeling is that every person gets to have full agency over the words/language they use to describe themself. Many people use words to describe themselves that have a history of being used oppressively or violently, such as “cripple,” “tranny,” and “queer.” There is nothing inherently oppressive about any particular word; everything is contextual, so if someone wants to call herself a tranny, that is absolutely her right. And if I ask you to call me queer, because that’s the only word that accurately describes something essential about me, I’m going to need you to do that even if you personally hate that word. I don’t get to insist that you have to call yourself queer and I don’t get to use that word for you if you hate it, but I have a right to have my own language of identity respected. Full stop.
That said, context does matter. There are many words of identity that are okay to use within a group that shares a cultural context and are not okay to use outside that group. The most notable example of this is probably the n-word. There’s nothing oppressive or violent about Black people using this word within Black contexts, but the history of white people wielding that word is so horrible and ever-present that there is no way that it would ever be okay for me to use it, as a white person.
When it comes to accurately describing dominant characteristics, that’s a really different situation. I don’t get to say, “I’m not white, that word doesn’t resonate with me.” Regardless of whether I identify with the word/concept “white,” I am white. It’s an accurate descriptor. When a marginalized person claims language to describe their oppressed identity, they are speaking themself into existence in a society that is trying to annihilate them. When a privileged person rejects an accurate descriptor of their privileged status, they are refusing to acknowledge that they are privileged. People who resist “cis” are basically saying that they prefer the words “normal” and “default” and that they want to continue thinking of trans people as the Other, as not normal.
When a marginalized person is described using language that they don’t identify with, that can often be an act of further marginalization and harm. When a cis person is accurately described as cis, that is not an act of marginalization or harm, it’s an act of using language to equalize an oppressive power dynamic. I hope this makes sense.
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Reblogged this on PhDoing Life and commented:
LOVE this. Thank you for the powerful insight.
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Reblogged this on Literary Lemonades and commented:
‘When a language rule—which was created specifically to respect people’s agency and personhood—gets in the way of actually respecting the person in front of you, it’s time to ditch the rule.’
Such a brilliant and enlightening piece!
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Isn’t it strange how people who aren’t part of a group are sometimes the most adamant and opinionated about what it should be called?
When my cousin lost most of her vision people kept trying to call her visually impaired, and she would sigh in exasperation and tell them to just call her what she was: half-blind. She had accepted it in its bluntness and wanted other people to stop tiptoeing or trying to avoid the subject. She has also learned how to function well in a sighted world, and wanted other people to acknowledge that she wasn’t impaired.
I love the overall message of this post. Treat people as people, and let them decide how they will be termed.
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I absolutely loved this article. I have been a huge advocate of “people first language” for many years but I understand why people prefer “identity first” and I absolutely love the “person-centered language” perspective.
For the past 34 years, I have been referred to as the HIV infected woman or HIV positive woman. The term infected is quite bothersome and I prefer people not label me by the virus that happens to live in my body.
Great article!
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It is a good article
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This was a great article, and this is a total tangent, but I’m wondering why this sentence is capitalized the way it is:
“as blind, not as people who are blind; or as Deaf, not as people with deafness.“
Why is blind not capitalized? Should it not be Blind as it for Deaf? I see this a lot in discussions about disability where Deaf is capitalized but in the same context, blind is not, and I’ve never understood it. You seem like the person to ask!
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Great question, Kris!
For a long time, Deaf has had a different meaning than deaf. When capitalized, Deaf refers to a cultural experience of being deaf (often including shared language, shared experiences of schooling, kinship with other deaf folks, etc.), whereas deaf simply refers to not having hearing. You can learn more about this distinction from this great FAQ page from the National Association of the Deaf.
There is a growing movement of using Blind in a similar way to refer to Blind culture, but it’s a much newer thing. According to Naï Damato, “It’s definitely true in the DeafBlind community, where people are very specific about writing DeafBlind with the capital B and not Deafblind or Deaf-blind. … Many hearing Blind people are starting to realize that there is in fact a Blind culture and are starting to use the capital B to denote that. …That said, it’s not nearly as crystallized as the Deaf capital-D and lowercase-d distinction.”
When I wrote the sentence “many people refer to themselves as disabled, not as people with disabilities; as blind, not as people who are blind; or as Deaf, not as people with deafness” I wasn’t intending to make any particular statement about b/Blind or d/Deaf, I was just listing a number of varied examples of identities / self-descriptions. Some people identify as blind and some identify as Blind. Some people identify as deaf and some identify as Deaf.
I hope this helps! Thanks for asking!
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Thank you very much for the wonderful insight!
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Yes! Yes! Yes! I appreciate this article so much. Thank you for writing it. Such a clear way to explain the complexity of language.
I have Bipolar Disorder, and while I refer to myself as someone “with Bipolar”, I have a blog/puppet show called “The Bipolar Puppet”. I tortured myself trying to come up with a different name, but nothing felt right. No other name felt authentic.
Once I started getting known, I got a lot of push back from people in the mental health community with really hurtful comments. “You sound like your living in a diagnosis”, “you are trying to be cute rather than respectful” and so on. The fact of the matter is, I had very specific experiences tied to puppets while I was in psychosis, and in a lot of ways, using the puppets and calling my stuff “The Bipolar Puppet” allows me to bring power back to myself.
There have been many times where the comments of others has pushed me into hiding, which isn’t great for my mental health. I need the puppets and to present accordingly because they are such a big part of my wellness tools.
I am presenting on this topic in a couple of weeks and I am so grateful I found this article as it really drives home the points I intend to make. I would love to point people to your article if that’s acceptable. ❤️
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I’m so glad you like this piece, Anginet! Thank you for your comment!
I’m so sorry (but not at all surprised) that you get hurtful comments from people about the name of your blog/puppet show (which sounds AMAZING btw!) and, by extension, the language you use to describe yourself. That is so completely not okay. Stay true to the words that speak best to you!
I would be honored if you wanted to point people to this piece; please feel free! I hope your presentation goes really well. ❤️
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Can we possibly get an update to this article? Language has certainly evolved and changed since it was initially published. Thank you for this important piece.
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