Labels aren’t Just for Jars: Give Kids the Words to Understand their Lives

Labels

Image Description: a hand places disability label cards onto illustrations of children. Still taken from video in post.

Yesterday, on Twitter someone shared this video and asked me for my thoughts.

Video description: A mostly unnarrated video in which a pair of hands puts labels on illustrated jars like jam, peaches, pickles etc. Then the hands start labelling drawings of children with intellectual disability, gifted, autism, learning disability, ADHD, Tourettes, cerebral palsy and Down Syndrome. The video ends telling the viewer that labels are for jars.

I think talking about my feelings on this needs a wider audience than the one on one exchange I had on Twitter.

I actually completely disagree with the entire video. I think it is important to give children the words to understand and describe their own experiences and that it is also important to teach nondisabled children about disability in a normalized way. I have written before about the impact of not being given the tools to talk about my experience as a disabled person.

Part of the problem of the “labels are for jars” argument is that it inextricably links the label with diagnosis and pathology. It completely ignores the possibility that the label can be part of a disabled identity.

It depends on the idea that disability is defined entirely in medical terms. That as soon as you’ve given a diagnosis and maybe described a few of the characteristics of that diagnosis that you’ve put that person into a box.

It completely ignores the reality of the disabled experience. Experience, that may be impacted by a specific diagnosis. An experience that very likely expands well beyond it.

Not giving children the words to understand their lives is not only a disservice, it’s straight up Orwellian.

Ignoring a child’s disability in the false hope that it will reinforce some kind of normalization is just an adoption of doublespeak. If we ignore reality, then maybe people will just stop bullying and discriminating against disabled people.

In reality, it only serves to further ostracize disabled children because it teaches them they are different and talking about that difference is wrong. It’s trying to solve the problem of discrimination by having the disabled child internalize their oppression and keep silent.

It infuriates me when parents or medical professionals recommend that children not be told about their disabilities in some misguided belief that this will gift the child with a normal childhood. It won’t.

Children aren’t waiting for a label before they decide to bully a peer. While language can be used to marginalize it is not the source of the stigma. Erasing language will not erase the oppression.

I grew up without a diagnosis for my autism. The lack of the label did not stop my classmates from bullying me so brutally that I changed schools, only to find new bullies at the next school.

When I finally got my diagnosis it was liberating. Finally, I understood my experiences. I had a frame of reference to understand why I behaved the way I did and why people reacted to me the way they did.

Having that diagnosis earlier wouldn’t have saved me from the bullies but it would have saved me from the added pain of not understanding why.

Not learning to talk about my disabilities also left me at a disadvantage when I was put in situations where acknowledging them was important. Because no one talked about my being disabled, no one considered how to accommodate me. I didn’t even realize that I had the right to be accommodated.

The erasure of language doesn’t just impact disabled kids. It impacts their nondisabled peers. It teaches them that disability is a dirty word and justifies prejudices against people who have been labelled. And kids will be labelled regardless of the omission of diagnosis. It just means that the labels will be insults and slurs.

Kids are best served by being taught accurate, respectful language. Disability should be normalized not by trying to create a false framework where the disabled children are just like their nondisabled peers. This utterly ignores the very real differences in experience.

Normalize disability by acknowledging it and by respecting the realities of disabled kids. Model inclusivity and accommodation. These things cannot be done if you haven’t even taught the children how to express their realities and ask for the things they need.

Teach kids how to talk about disability

Empower disabled kids to understand and talk about their lived experiences.

Teach nondisabled kids that disability isn’t something to be ignored or overlooked.

Language and identity are complicated and children, as they mature and grow may decide for a variety of reasons that they don’t like or identify with a certain label. These language preferences should be respected but I would like to see a world where a label isn’t rejected because a child has internalized stigma and prejudice and believes being associated with it makes them less.

Give kids words. Language empowers. Denying kids words is erasure.

Remember that sometimes words aren’t just labels. Sometimes they are identities.

 

 

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Could You Please Stop Insisting that People Have to Use Person First Language

There are so many of those lists explaining how to speak to disabled people respectfully. They are generally well intentioned and some of them are even really good. There is however an almost universal element that I wish would be retired. They inevitably include a statement that disabled people should ALWAYS be referred to using Person First Language (see an example here).

I have issues with the command to always use Person First Language for two reasons.

1. Person First Language is culturally geographic. It is only consider PC in North America. Interestingly if you were to read the same article in English speaking Europe they would insist that you say “disabled person”.
2. Despite it being widely considered PC in North America, a growing number of disabled people (myself included, see here and here) are intentionally abandoning it.

This isn’t about completely switching the script. I’m not suggesting that we ban Person First Language or that people shouldn’t use it (so don’t attack me in the comments). I’m saying that realistically person first language is not always appropriate (from a purely cultural sensitivity angle) and demanding that it be used anyway is a tad clueless.

The insistence  that people MUST use People First Language is also just disrespectful, not only to how many people are coming to self-identify but also completely ignoring that the reasons that we do so might actually be valid. Ignoring the voices and preferences of actual disabled people just reinforces the idea that we are incapable of determining what is best for us.

Whenever I come across the Person First edict on a “How to Be Respectful about”. Disability” list. I always wish it had been replaced with something along the lines of,

How to Deal with Disability Labels

Language around disability is complicated and there is currently no universally accepted term. Even the terms that are considered most acceptable like people with disabilities (in North America) and disabled people (in the UK) are not universally accepted by people in those locations. In order to be respectful it is usually inoffensive to default to the most acceptable term based on your location. However, if a person expresses an alternate preference, it is extremely rude and disrespectful to insist that they conform to the dominant preference. Best practice would be to utilize the term that the individual prefers.

I repeat. It is extremely rude and disrespectful to impose labels on people who have clearly expressed an alternate preference.

I wish this concept wasn’t so hard to understand.

 

 

What Learning Other Languages has Taught Me About How I Learned to Talk About Disability

I am an anglophone, so I first learned to speak English and it is the language I use almost exclusively day to day. I however spent my first six years of elementary school in French immersion which despite having been nearly twenty years ago at this point has left me functionally fluent in French. By which I mean I can get by in entirely French environments. My vocabulary is extensive enough, though my grammar skills are lacking but good enough to make myself understood 90% of the time on the first try. I can also read the language. though don’t ask me to write anything down as my written literacy in French is terrible.

I also have some very basic skills in German after having taken it for a couple semesters in high school and taken it up again for four or five semesters in university.

In reflecting on my non English language training I came to a realization. I was never really taught how to narrate my experience as a disabled person in any language.

In school none of the activities we talked about as we learned to read or write (in English or French) ever related to disability. They were always geared entirely toward able-bodiedness. The proverbial Dick and Jane or Spot the Dog (and their French equivalents) all ran and played and tossed and caught balls. In these lessons the other children were learning not only the rudiments of grammar and literacy but how to describe their own lives.

I was never taught to articulate how or why I couldn’t do the things my peers did, like why I couldn’t cross the monkey bars. I knew even as a Kindergartener that I had Cerebral Palsy but no one ever taught me how to talk about how it affected my life. So I knew I couldn’t cross the monkey bars but I couldn’t articulate why. Words like disabled and disability were not in my vocabulary, much less an understanding of how cerebral palsy affected my body.

Most children start grade school with the vocabulary to list off the parts of the body (Head and shoulders,knees and toes etc.). Learning the French equivalents was much the same. When we did biology lessons on the body, everything was framed through a lens of able-bodiedness. When we studied the brain, we only ever learned about it through a neuro-typical lens. No wonder, no one ever considered that I might be Autistic as a child, no one around me even had the words to describe difference. A medical definition of normalcy was completely ingrained in the places I found myself.

We didn’t learn words like disabled, wheelchair or crutches. Disability was erased from existence by simply never being mentioned.

I had those words in English eventually but I didn’t learn them in school. They were not words that appeared on spelling vocabulary lists. I never had to look up their definitions in a dictionary.

I learned about the words that describe my life in an entirely medical environment in a completely hodge-podge manner, through overhearing snippets doctors told my parents. These exchanges were never directed at me. I just happened to be in the room when they took place. Terms like brain damage, hemiplegia (a word spellcheck doesn’t even think exists, apparently I’m supposed to have meant paraplegia). Terms like walker and crutches were learned from observing the other people who came to the local rehabilitation hospital. The only one I think I got out and about in society was wheelchair and even then it’s use was framed more in terms of something elderly people needed, rather than connected to disability.

I was never taught the French equivalents of these words. I think the only one I learned organically was the term for wheelchair. I think it was in a book we read for school. Other than that my limited disability related French vocabulary comes from me actively looking them up as an adult. Even so I think I can only explain cerebral palsy in French at a very simplified first grade level. I’ve never had to seek medical treatment in the French speaking places that I have lived so I just never got taught the words in the only place they seem to be imparted to people.

That is not to say that I never encountered disability related language in grade school. It all just happened to be of the slur variety. I was definitely called a retard on many occasions. Oddly, my French immersion peers would always follow up this insult with the bizarre claim that it meant “really smart” in French as if they could convince me I hadn’t just been insulted. It is bizarre because the word retard comes from the completely innocuous French word for late or slow. As a result I was pretty familiar with it.

The point of French immersion is to have the student completely fluent by the time they finish grade 12. Even though I didn’t get that far and transferred to an English school in grade 5, I doubt that I just left before the disability vocabulary list was assigned as spelling tests are abandoned for more in depth grammar and writing training around that time anyway. I also never learned about disability and language in any of the English classes I took after that and I doubt French schools were teaching more than their English counterparts.

Oddly in terms of studying German, the instructor made a conscious choice to not teach us disability vocabulary.

Sure my semesters in high school were the same simplistic head and shoulders, knees and toes vocabulary, you get in Kindergarten but by the time I started taking university level courses, we started having more complex terms and learning to understand them in practical context.

I remember in one of my later intermediate courses, there was a word list in the textbook that specifically dealt with disability. It had words like disability, wheelchair and crutches. The professor for the course told us to skip it. I remember being disappointed but not being brave enough to ask her why. I did go through the section on my own time and the only issue I found was that the reading comprehension section, where they put the vocabulary in context did veer into inspiration porn territory. It was a story about a 19th century woman who used a wheelchair and ran a successful toy factory. The last line of the piece was something along the lines of “It just goes to show that a person in a wheelchair can be a success!” *sigh*.

While, yes I could learn these words and how to use them on my own time, I sincerely doubt that any of my nondisabled peers felt compelled to do so. So even when non-medical centred opportunities present themselves, they really only hold appeal to people personally affected. Learning about disability still isn’t seen as necessary, it is extra.

It is in reflecting, particularly on that experience in German class which really drove home how building my disability vocabulary was entirely medicalized when it really didn’t have to be.

I do wonder if things are different now at least for children (that German textbook incident wasn’t really that long ago). I didn’t have access to the internet as a kid. Discussions and debates around terminology like person first vs. identity first didn’t exist back then. There was no call to #SayTheWord.

I am worried that these important language discussions don’t really trickle down to children, whose worlds are still very much framed by the adults around them. Adults who are themselves often non-disabled. Just consider how strong the unflinching support for person-first language can be among certain parent bloggers.

So I wonder are we still denying children the language to speak about and understand their own lives? And if so how can we work to change it?

My Love/Hate Relationship with Dragon NaturallySpeaking

So I type one handed and I’m an academic so a lot of typing is required, this poses a couple of issues. First I can’t type very fast and second I regularly feel like I’m getting carpal tunnel syndrome. I’ve been tested for the condition twice and in both cases the results were negative. While I may not have carpal tunnel, I do often deal with a lot of wrist and hand pain from typing. It was recommended that I start using speech recognition software and the only one that was ever recommended (by multiple people) was Nuance’s Dragon NaturallySpeaking. Since then I have owned and used two versions of Dragon. Dragon Home 11 and Dragon Home Premium 12. I will discuss my experience of both individually and then discuss issues that are common to both.

Dragon 11

I primarily used Dragon as dictation for writing but like most people with a new toy, I checked out its other features. Primarily controlling my computer with my voice. I was particularly amused with its functionality on the internet. I liked how I could command the software to open a link and have it do so (I know I’m easily amused). This function did however show an issue not with Dragon but with the general inaccessibility with website design. Occasionally buttons would not be coded with their visible titles. This meant that if you want or have to open a link with your dictation software, you have to verbally guide the mouse to the button and request the mouse click it,

Overall I enjoyed the software. I didn’t find it to be nearly as accurate as they claim (yes I calibrated it for highest accuracy). Anything composed through Dragon requires close editing.

The biggest issue I found was that it was completely incompatible with the web service Moodle which is commonly used by universities to offer online classes or online companions to campus classes.

I don’t just mean that I couldn’t dictate in Moodle, somehow the combination of Moodle and the Dragon add-on cancelled the ability for me to even type in the program. In order for me to complete online courses or online components to classes, I had disable the add-on. This forced me to type all communication through the site. It also put me at a disadvantage when taking internet delivered exams as I would have to type.

Dragon 12

I have a lot of buyer’s remorse over upgrading to Dragon 12. I found that the software was much less user friendly and entirely incompatible with the internet either for typing or navigation. If I tried to use Dragon with the internet, rather than obeying a command or typing in a text box, it would open another box type whatever I said and then I would have to click through to transfer the text to the web. So it had no navigation capability and an overcomplicated way of entering text. According to the product description, this is not how the software is meant to work so something was going wrong. My attempts at communicating with tech support were fruitless.

While I got nowhere with tech support. I was regularly called by sales begging me to upgrade to Dragon 12 from 11. As I had already done this, these repeated calls were frustrating as I explained each time that I had already done so and registered my new copy. I received at least five such calls before I demanded to be removed from their phone list.

As song as I was only dictating in Word, it worked as well as Dragon 11 but heaven forbid I needed to change tabs to check something in another program or particularly if I needed to check something online. Even if I turned off the microphone. Doing anything other than dictating while the program was active would initially slow both the program and my computer and ultimately cause Dragon to freeze, forcing me to forcibly close it through task manager and restart it. This issue deteriorated to the point that Dragon would crash on it’s own every 10-15 minutes. This eventually forced me to request the only assignment extension of my entire Masters degree because it was so time consuming.

Dragon 12 was a complete failure in functionality.

Issues in both versions

Accuracy, all versions claim to have accuracy rates over 95%, this has not been my experience at all,. Even after longterm use (accuracy is supposed to improve as you use the program more). This might be due in part to the highly academic work, I most commonly use it for, it recognized the word obstetrics as Star Trek. Often if you don’t catch errors immediately but find them later during editing it is difficult or impossible to discern what the intended word or phrase was to begin with.

I have a BA Honours in Women and Gender Studies and I occasionally wrote about issues of gendered and sexual violence. I found that the software was more likely to misinterpret words associated with violence. It really didn’t want to recognize the word rape for example. It wrote thing like grape or great. The software does have word training where you input the word and then train it to recognize your pronunciation of that word. Even with training it still didn’t want to accurately recognize the word rape. There is something disconcerting about yelling the word RAPE at your computer in frustration even if no one is around to hear you.

International English norms

Nuance and Dragon hate Canada, I can think of no other explanation. When you first use the software, you have to train it to recognize your voice. You help this along by setting your location so that it knows what accent to expect and what spelling is preferred. I don’t even know why there is a separate option for Canada because during selection it says in brackets that Canada uses American spelling. This is not true. Canada follows the British spelling system. Unfortunately selecting Britain isn’t a great option either because although we share spelling norms and say Zed instead of Zee, we use American terms for punctuation. We say period to denote the dot at the end of a sentence rather than full stop like the British. This causes issues of flow while dictating.You can’t change the settings in the software to change punctuation commands.

I am to fully programmed to use North American punctuation to be able to use the British settings. Using the Canadian/American setting causes it’s own difficulties that go beyond my frustration with being forced to adopt American spelling. If a word isn’t in Dragon’s dictionary (which happens a lot with academic terms) you can add them by dictating the spelling, You better just hope that the letter Z isn’t involved. I constantly forget that Americans say Zee, so I’m yelling Zed at my computer with no results. It’s beyond frustrating and a genuine flaw in the design of the software.

The fact that the software set up has to put in brackets that they assume Canada uses US spelling suggests that they know we don’t and just don’t care to set up a properly functioning set up for us. This despite the fact that they acknowledge the Britain does use another spelling and terminology and gives the preset options. You can go in and change the dictionary to reflect Canadian spelling but that is time consuming and quite frankly you shouldn’t have to. This is a huge oversight on the part of the software designers and it needs to be fixed.

Conclusions

When the software works it doesn’t seamlessly replace typing but it is a great option for those who can’t type or want to limit their typing. When the software fails it can be a big problem for the users who rely on it. There are some flaws in the software that I genuinely hope the designers will fix (though considering my experience with customer service I’m not holding my breath). They have now released Dragon 13 which I haven’t used and my attempts to see if they fixed the language flaws have been fruitless so I’m going to assume that they haven’t.

I start my PhD in the Fall and I will need to replace my Dragon 12 because it causes more problems than it solves and I may have to research the competition while searching for a replacement.

This post was typed single-handedly because my copy of Dragon 12 is unusable.

Can We Please Stop Calling Able-Bodied People TABs

Physical access for people with disabilities is crucially important for an inclusive society. We currently fall far short of being fully accessible. This is true pretty much everywhere, though some places are worse than others.

It can be difficult to get people who do not face barriers to public access to take those barriers seriously or to even acknowledge how widespread those barriers are. As a way to bring context to this issue where one side lives an experience of regular and often unpredictable public exclusion and the other which is allowed to remain blissfully ignorant, the disabled community came up with the abbreviation TAB.

Temporarily Able-Bodied. In an effort to build understanding around the issues of disabled people, we chose to remind people that we are a group they can join at any time and most crucially are very likely to join. It is described as

“AB” is an abbreviation for able-bodied; “TAB” is a slightly more to-the-point abbreviation meaning “Temporarily Able-Bodied.” TAB refers to the inevitable—namely, that most of us will face disability at some point in our lives; whether it comes sooner or later varies depending upon one’s circumstances.

Frankly, there are better ways to explain why accessibility and understanding of disability issues are important.

Accessibility helps anyone who has to push a stroller or carry boxes. Full accessibility and its maintenance make life easier for everyone who has to move around. Disabled people are simply given more equal access. Access that is often otherwise denied.

Laurie Toby Edison and Debbie Notkin, who use the term TAB argue that

Using it is a way for a disability activist (or anyone discussing disability) to quickly and effectively bring all of her/his listeners into one group: some of us are disabled now and many of us will be sooner or later. It’s a phrase that builds community, that reminds people that the needs of some are really the needs of everyone. It’s akin to “universal design” as a phrase reminding us of what brings us together, rather than what separates us.

I find this view a bit naive. Disability is still deeply stigmatized. People actively fear becoming like us. I have a friend who often states that they would prefer to die young than ever become dependent in their old age. Even the authors of the last quote understand that the term can be problematic simply because it is not true. Not all currently able-bodied people will become disabled ether temporarily or permanently. They say,

At the same time, like any catchphrase, it’s oversimplified. Disability is not inevitable. Only two things are always temporary: life, and youth. Everything else is conditional, contextual, and/or statistical. Definitions of ability/disability are exceedingly complex; even definitions of “aging” are less obvious than they might immediately appear.

Ability is not always temporary. Two large groups of people are able-bodied until they die: first, those who age able-bodied (not just 90-year-old hikers but also people over 80 who walk to the grocery store every day and clean their own homes). Second, and harder to see, are the people who die able-bodied at any age. In a culture that tries not to admit that people die at all and is especially resistant to admitting that young people ever die, it’s important to remember that death and old age are not synonymous. And, of course, disability is not always permanent either: the world is full of people who are temporarily disabled.

Despite their misgivings, they ultimately still believe that the term has value as a community builder and they intend to continue using it albeit with disclaimers.

I genuinely see the term TAB as more of a threat (at least in how it is perceived, regardless of the intent of the user) than anything useful. It is saying, you will be like us someday and how will you get around the world then?

I most frequently hear TAB used as an inevitable description. As already pointed out this is simply not true. As Notkin and Edison point out, people have difficulty coming to terms with mortality. Disability though not always deadly is an extension of that fear. People do not view acquired disability calmly or dispassionately. They quite often fear it.

Ezekiel J. Emmanuel sums up why he would prefer to die early, rather than live as long as possible,

But here is a simple truth that many of us seem to resist: living too long is also a loss. It renders many of us, if not disabled, then faltering and declining, a state that may not be worse than death but is nonetheless deprived. It robs us of our creativity and ability to contribute to work, society, the world. It transforms how people experience us, relate to us, and, most important, remember us. We are no longer remembered as vibrant and engaged but as feeble, ineffectual, even pathetic.

So disability is feeble, ineffectual and pathetic. Emmanuel is far from alone in his beliefs. If he weren’t this discussion would not be necessary.

For a term like TAB to be effective at including others in understanding, they must first understand that disability is not a fate worse than death.

Unfortunately, understanding disability and the barriers disabled people face will take more than a term that is at best misleading and at worse could fan flames of fear because telling someone who fears disability that they are likely to become disabled is more likely to cause backlash than open channels of communication.

When is Language Ableist or Offensive

Comedian and disability rights activist Maysoon Zayid was recently featured in a Think Big video where she advocates for disabled people being given opportunities to be cast in film and television roles where the character is disabled. Currently the most common casting decision is to give those roles to nondisabled actors. The video is well worth a watch.

Since the video is on YouTube it has garnered a lot of comments and as with most comment sections on the internet many of the messages are offensive. Oddly this post is not about ignorant commenters but rather a conversation Zayid had on Twitter regarding one specific comment.

She begins with this tweet

ableism language 1

She is paraphrasing for the brevity required of twitter. In this tweet shat has used #retard to draw attention to the original commenter’s offensive language.

The first response agrees that the comment is both ignorant and offensive and concludes by calling the commenter a #moron.

ableism language 2

For context, here is a little history of the linguistic evolution around intellectual disability.

Words like idiot, moron and imbecile used to be medical terms but by the late 19th century had been widely adopted by society as general insults. In a move intended to find terms the medical community could use to describe intellectual disability without resorting to insults, a new medical term was adopted. It was retarded. Until then the word retard had been used to mean slow down or impede. Since its adoption in relation to disability however, it has become a slur that easily rivals the offense caused by its predecessors in offensiveness.

Likely because she was aware of this history one respondent questioned the use of language.

ableism language 3

While it was established that the use of #retard was in fact a direct reference to quoted language from a YouTube comment, the use of #moron was not.

This led to a conversation about whether moron is still ableist and when language is ableist, It seems to have concluded with these three tweets

ableism language 4

ableism language 5

ableism language 6

After this Mills no longer participates in the conversation and it moves on. Whether her absence is because she feels the matter is settled or is no longer comfortable questioning it, is unclear.

I am not going to take a stand on whether terms like idiot and moron are still offensive in an ableist way. Quite frankly it isn’t my call. Those words have never been connected to me medically so I am not directly oppressed by their continued use. I do however know that there are people who are affected by those words in ways that extend beyond their synonymous connection with stupidity.

I would however like to comment on the idea that ableism is only present when in the direct context of disability or when directed at disabled people because that just doesn’t make sense.

Words mean specific things. I can’t make the word ugly mean beautiful just by how I use it in a sentence.

The word retard does not stop being offensive or ableist when it is directed at someone or something that isn’t disabled. This was eloquently evidenced by John Franklin Stephens when he challenged Ann Coulter for calling President Obama a retard.

This is not just a disability issue. Just look at how the word gay which now most commonly refers to homosexuality but others have used it as a general pejorative. When someone calls an outfit or a situation gay, they are associating being gay with all things negative. The fact that no actual gay people are present is irrelevant.

Using words that reference a group of people and directing as a negative insult is harmful whether or not the people referenced are present to be directly hurt by it. This is because it culturally normalizes negative associations with that marginalized group and adds to systemic oppression.

I realize that it is impossible to have this kind of in depth discussion when limited to 140 characters, which is why I’m responding here.

I think particularly when considering ableist language when it discussed by disabled people, it is important to remember that disability may be the largest minority group but it is also one of the most diverse. Even if you ignore intersectional identities like sex, gender identity, race, sexuality, religion, etc. Disabled people are diverse in their diagnosis and sometimes this one identifier has social repercussions that are not shared with the whole disabled community. What may be offensive to one group could be unimportant to another. It is essential that while fighting for equality and an inclusive society that we don’t leave part of the group behind. The hierarchy of disability is real and it is often internalized.

When deciding if language is ableist please consider more than its effect on disability as a whole or if perhaps there is a group that you don’t fit into that may be differently affected.

Update

I have been asked by one of the people involved to remove their name and image. I have done so

Update 2

Amanda Mills has contacted me via twitter to confirm that she did leave the conversation because she no longer felt welcome there and felt as though she was being treated as overreacting.

I make this update with her permission.

When Supposedly Progressive Guides to Talking About Disability Get It Wrong

So I am very passionate about the language of disability. I really want it to progress to a place where people are not misrepresented or marginalized by the language used to describe them. So I get very frustrated when nondisabled people coopt the narrative and through well intentioned ignorance set the movement for inclusive language back several paces.

Take for example this article by Merrill Perlman published on the Columbia Journalism Review titled The Proper Terminology to Use When Writing About Illnesses.

The authors stated intent is to help others use more respectful language when writing about “illness”. She fails immediately because from reading her article what she means by illness is actually disability and they are not synonymous. Disabilities are the ones she most frequently references are not diseases and should never be discussed in such terms. While some illnesses can be disabling they have distinct differences from disabilities like paralysis, cerebral palsy or down syndrome. She does briefly reference how to address a serious diagnosis (cancer). She however never differentiates between disability and disease. People with disabilities are not ill and many of us don’t want a cure, which is good because for many of us a possible cure is unlikely to surface. Illness is closely linked to suffering a word she acknowledges should not be used in conjunction with disability. I have cerebral palsy and autism and neither of these is an illness. The flu that I’ve been fighting the last few days is. Please be aware of the difference.

Her only accurate insight seems to be in what actual words should be avoided. She  counsels against using words like victim and suffering. I can agree with that.

However, her disability specific advice leaves much to be desired. She starts out with physical disability, saying,

“As a society, we’ve gotten better at accepting terminology that is less slur and more description: “Developmentally disabled” is better than “retarded,” and while “physically challenged” is still not as common as “handicapped,” it’s thankfully more common than “crippled” nowadays. We mention that a child is “adopted” less often, and usually only when it’s relevant.”

Society may be aheah of Perlman here, the reason that physically challenged isn’t used as much as she’d like is because it’s genuinely awful. If you are a third party writing about someone else please never use it. As far as I’m concerned it’s as bad as handicapped. Disabled people don’t face challenges, We face barriers. The fact that there are stairs and no ramp isn’t a challenge it’s a barrier. The fact that able-bodied people often underestimate those of this with disabilities is a barrier. Framing our lives as a challenge justifies systemic barriers because it’s much easier to believe someone can overcome a challenge than a barrier. So in keeping with the fact that Perlman wants to help, I will offer a better term:

If you are in North America use Person with a disability

If you are in the UK, Ireland, New Zealand or Australia use disabled person*

The other passage I find problematic is this,

“Where we often fail, though, is in using terms associated with illness and infirmity. “Confined to a wheelchair” or “wheelchair-bound” have appeared more than 1,000 in Nexis in the first quarter of the year. Yet those give a negative associate to the person in the wheelchair. Simpler, and more accurate, would be to say someone “uses a wheelchair.” Even better, say why the wheelchair is needed: “She has used a wheelchair since she her legs were paralyzed in a diving accident 10 years ago.””

It starts out pretty good, uses a wheelchair or wheelchair user are much preferable to wheelchair bound. I get confused however about how it is simpler to just describe the disability. No it’s really not. It comes off as voyeuristic and unnecessary. Perlman even contradicts herself later when she says that disability shouldn’t be mentioned unless it is absolutely pertinent. I am sure there are times when it is pertinent to mention that a person uses a wheelchair but the reason why is entirely irrelevant. Needing to mention a disability is not the same as needing to rehash a person’s entire back story.

I respect Perlman’s intent with her article but I question the follow through. Language is so important to how the world around us is framed. It affects how people are viewed. I will close with some additional tips for third parties (nondisabled people) writing about disability.

Don’t just avoid physically challenged when speaking generally also avoid any euphemisms like “special needs” or “differently-abled”

Be prepared for the fact that the disabled community is very diverse and opinions on personal labeling may differ from political correctness. When referring to an individual, please respect personal labels.

When in doubt try and find answers from actually disabled people.

*For an explanation of why language differs geographically see here