Pregnancy and the Fear of Disability on Facebook

Congratulations on the baby, do you guys want a boy or a girl?

Oh we don’t care, just so long as the baby’s healthy

This is such a common conversation that occurs during early pregnancy and it makes many a disabled person cringe, myself included. Don’t get me wrong, I understand the sentiment and as far as I’m concerned, I was born healthy. I had not illnesses but I did have an Autism Spectrum Disorder and Cerebral Palsy. Anyone who tries to tell me that these things make me sick is risking their own health.

I rather like Karni Liddell’s take on it (watch her Tedx Talk here). She understands the sentiment and often thinks it herself but when she hears it, she is faced with the fact that she was that unwanted unhealthy baby. She does not however advocate for a change in perspective. She asks for a slight change in language. Instead of saying “I just want my baby to be healthy” replacing it with “I just want my baby to be happy”. The sentiment is just as true and if you do end up with a disabled child it can remain true without ever making that child feel unwanted.

Conversations about pregnancy and children are however getting more complicated and the previously mentioned conversation is now not the worst thing a person can say about the prospect of a disabled child. We now live in a world of social media and I must say I generally loath pregnant people on Facebook, whether disability comes up or not. I find ultrasound pictures unsettling and kinda creepy and yet I have friends who use them as their profile pics. Why can’t people wait until the kid is born to overshare pictures?

Today however I was horrified by a post that showed up on my wall. A friend who seems to live her life publicly online decided to share her excitement over her prenatal test results.

Not only did she gloat that that the tests were negative for genetic disorders like Down’s Syndrome, She also bragged that apparently the odds of her having a child with a genetic condition were actually lower than the average negative test results.

It is not enough that her child is unlikely to have a condition that can be tested  for. She must publicly brag that it is even less likely than the usual unlikeliness, as if it were some kind of accomplishment.

This is the sort of personal medical information that no one needs to know and certainly does not need to be shared with her hundreds of Facebook friends. Her husband even commented that it was the best news that he could ask for.

This takes the rather innocent “Healthy Baby” conversation to a more direct “I am so glad I am not having a child like that!” conversation. And to be honest I am also glad they are not having that child because no child deserves parents who can speak so callously about people like them.

The reality is however, that there are far more congenital conditions that can’t be tested for than there are that can. Take my ASD and Cerebral Palsy, there was no warning for either and the latter likely wasn’t a result of a difficult birth as I wasn’t born in medical distress and in fact was not diagnosed until I was over a year old. I was also not born premature.

I can’t imagine how a child might feel if they were disabled in some way for which there is no test, if they go through their parents all to well documented lives and see the glee they felt when they thought they had avoided their child.

This is not an argument against prenatal testing. It is however a request that the results be handled respectfully. Even if the results are negative, you may end up with a disabled child. You may end up with an able-died child who through later accident or illness becomes disabled (this is actually more likely as there are more people with acquired disabilities than there are with congenital ones). Please don’t teach your children that they are inherently better or more loveable for being nondisabled because that might change but their value shouldn’t. And lastly don’t do this because in the semi-public nature of Facebook, the likelihood that this will be seen by someone affected by these conditions is high and people should not be made to feel lesser than in what is supposed to be a social space among friends.

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Don’t Use Being Nice to Disabled People to Redirect Attention Away From Police Violence

Did you know that all the backlash against police misconduct that is currently happening in the United States is actually just people needlessly abusing poor kind police officers?

You didn’t? You probably think it has something to do with the spate of unnecessary deaths of black people at the hands of  police. Police officers who are then rarely if ever punished. Deaths that continue to happen despite the growing awareness of questionable police practices.

I am heartbroken as I continue to see new incidences of police violence against people of colour. I am horrified at the lack of accountability police departments have shown. I am particularly troubled by the us vs. them mentality that officers in affected communities have fostered. They have set themselves up as victims. Police turned their backs on New York Mayor Bill De Blasio when he attended the funeral of a slain police officer. Their grievance? De Blasio had acknowledged the systemic nature of racist policing that led to the death of Eric Garner and the issue of the use of stop and frisk against communities of colour in the city.

It is unfortunate that there are a lot of police officers who seem to see any criticism of policing as a personal attack. Whether or not most officers don’t participate in these acts of racialized violence is irrelevant. Failure to recognize and push against the environment that is all to permissive of those who commit violence is the problem. The fact remains that when violence happens, there is little recourse. In situations where there are no witnesses, the police officer is believed. That’s a lot of power.

It is power that is demonstrably not earned, consider the recent death of Walter Scott. The officer claimed he killed Scott in self defense. He said Scott stole his taser. Video evidence has since proven that Scott was fleeing and it is like that the officer planted his taser near the body of his victim. In this case unlike so many others, charges have been laid against the offending officer. Unfortunately this outcome is not likely a signal of a social shift away from the unnecessary loss of life.

During what is tragically only the most recent example of senseless violence, the death of Freddie Gray while in police custody, I was reminded of a video I saw around Easter. It is a video about a father who found a way to make beeping Easter eggs so that his visually impaired daughter could participate in Easter egg hunts.

For the most part, the video is endearing and aside from the sexist remark at the beginning about the pink phone and his comment about how he thought he would have to institutionalize his visually impaired daughter, it is generally informative.

Despite being a feel good piece about helping blind children, it manages to avoid veering into inspiration porn territory. It is actually quite informative as to how to include children with visual impairments in social functions where sight is generally considered necessary.

Where it gets dicey is near the end around the 5:45 mark. He has throughout the video mentioned that he works for the ATF and that the ATF and other law enforcement agencies have been making these eggs. So the nice actions are connected to the makers but right at the end he makes a comment which makes me very uncomfortable. When the reporter asks him how other people can support this initiative he says (emphasis mine).

You could even call your local police department and talk to somebody with the bomb squad or call your local ATF office. You know law enforcement has taken a beating here lately and the Christan Church as well and both organizations have selflessly stepped up.

The first time I watched this video as soon as he said “law enforcement has taken a beating” I stopped the video in disgust. I could not believe that he would make a veiled reference to protests against police violence and so utterly disregard why there are protests in the first place and place law enforcement in the role of victim.

He also decided to use helping disabled children as a way to minimize the seriousness of the situation. Helping one marginalized group does not erase an organization’s role in the active oppression of another!

To me this is just awful. It’s like saying “ignore or overlook the suffering of one group by looking at the marginal inclusion of another”

You might say that this interview was taped before the death of Freddie Gray so it is applied out of context but it was not before the deaths of

Michael Brown

Eric Garner

Tamir Rice

and so many others at the hands of police and I assure in these cases it was not law enforcement that was taking a beating.

Helping build inclusion for disabled people is wonderful and educating others on how to do it is very important. Being a part of that push to inclusion does not however erase a groups involvement in the deaths and oppression of people of colour.

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.

Sneaky Racism, I Wish You Wouldn’t Show Up in My Facebook Feed

racist bullshit

So today, I will be deviating from my usually disability focused writing because stuff like this really pisses me off.

The above image reads

Doesn’t Make Much Sense, Does It???

Homeless go without eating. Elderly go without needed medicines. Mentally ill go without treatment. Troops go without proper equipment. Veterans go without benefits that were promised. Yet we donate billions to other countries, and excessive immigration before helping our own first. 1 % will re-post and 99% won’t. Have the guts to re-post this. I KNOW I’m in the 1 %.

This image was created by a British political group called Britain First. Britain First is an offshoot of fellow political group the British National Party (a group that has only allowed non-white members since 2010 and then only after a court order). Britain First is staunchly anti-immigrant. They are also anti-Muslim. In 2014 on two occasions group members entered Mosques to either hand out Christian literature or simply berate worshippers.

I personally find the content of the image abhorrent regardless of its connections to Britain First. I call is sneaky racism though because not all people recognize the racist undertones or feel they are overshadowed by the call for increased social services.

So lets look at what the text actually says.

It starts off by listing a lot of serious social problems. Poverty affecting the elderly, the lack of effective available help for people with psychiatric disabilities (psychiatric consumers/survivors). The lack of appropriate funding for the military (I’m not sure I agree with that one) and the lack of supports and services for returning veterans.

These issues are so common that the fact that I am Canadian and the friend who posted it was also Canadian make these issues relevant even though the target audience was British people.

Do these issues need addressing? Absolutely, these issues and many more.

What is causing these problems?

Britain First makes no clear claim regarding the actual causes of poor social funding but they strongly imply in this image that government spending on international aide and immigration supports are taking money away from natural born Britons. By extension any Canadian or anyone from a country in the Global North posting it is implying the same thing about their own country.

It implies that foreign aid is a one way flow of money from the donor country to a foreign recipient with little or no return. Foreign aid is in fact much more complex than that.

Immigration is also more complex than foreign national entering countries for the purpose of taking jobs and using social services. Often they are brought in to meet a need or if immigration is abused it is more likely at the hands of locals than the immigrants.

Take for example the much maligned Temporary Foreign Worker program in Canada. Workers were only to be brought in if there were no qualified Canadians to fill those jobs. Yet there was story after story of employers firing Canadian workers in favour of TFWs.

In all these cases, it was not the immigrant at fault but the Canadian employer. The immigrant usually thought they had found a work opportunity and took it. Unfortunately once in Canada they were sometimes abused by their employers.

In reality the lack of funding for social programs is far more complicated than funneling money into one area rather than another. If a country cut funding for immigration and aid, there is no guarantee that it would be be sent to social programs.

Here in Canada the government has recently been criticized on an international level for not sending enough foreign aid.

So on the face of it, the Britain First Image is misleading at best and dangerous at worst.

It creates an us vs. them situation and the them is quite often people of colour. While it is true that white people immigrate, they are not the most noticeable additions to a society dominated by other white people nor are white people the primary recipients of foreign aid. That lack of explicit racism lets people argue that it’s not about race but the reality is that this argument is naive at best.

Despite the actual textual argument in the image, this picture still ended up in my Facebook feed. Posted by someone, I would not generally classify as racist. Yet when I explained the origin of the image they simply denied personal connections to racism. They also voiced personal support for both immigration and foreign aid but refused to acknowledge the problematic undertones of the image and argument they had shared.

Now some of this is likely due to a combination of not thinking to critically before hitting the share button and cognitive dissonance. No one wants to think that they have violated their stated belief system (in this case nonracist and social justice oriented).

I however think that posts and images like this are actively designed to fool people into sharing them to both expand an idea outside the insular group that holds it and in so doing make that idea seem more popular than it actually is.

This image starts out with an easy to agree with premise that people feel connected to. People are suffering because of a lack of social services. They then present a hypothetical strawman, the foreigners. They keep the connection vague and avoid overtly offensive language like slurs. They hope you stay with the emotional connection to suffering. They ignore that immigration and foreign aid* can also be tools to combat suffering.

The post then dares you to share it. It goes further than that. It suggests that people who share it are brave. YOU could be a hero. YOU could be the voice of reason to the majority who won’t share it. This framing in conjunction with the emotional impact could be more than enough to convince the uncritical to hit share.

This is not the first image I have seen that dares the viewer to share it. In some ways I think images like this have replaced the chain e-mail that used to promise luck if only you would share it with at least 15 other people. It plays on superstition and a desire to do good.

The internet can be a powerful place for activism but if the activism you are willing to do consists solely of posting easily shareable images. I would ask you to reconsider. It is all to easy to post something you only partially believe in because you missed the problematic undertones or you are simply trusting that your friends will know you didn’t mean those parts. If you actually want to do good, make a personal statement don’t share or copy and paste, at least then there will be no doubt where you stand on an issue.

*I am aware that foreign aid if fraught with controversies over its roots in colonialism and that the limitations placed on recipient countries can add to suffering. This is an important issue that needs to be discussed. For the purpose of this blog post I am focusing only on the racist overtones of using racialized groups as the boogeyman to further racist agendas.

Hey DC Comics and The Flash, Diversity Covers Disability Too!

The following post contains spoilers for the CW show The Flash

Television shows based on DC Comics generally do pretty well in representing women and people of colour. In fact cast members and the creative team of The Flash recently patted themselves on the back for this. But the Flash has a problem with disability and it’s not because they’re ignoring it. In the show there are two kinds of disabled people. Those who have mental illnesses and those who are faking it. Both cases leaves much to be desired in terms of accurate portrayal.

In the case of mental illness, the problem is that all those characters are villains and their madness contributes to their crimes. In the episode Tricksters, the two criminals are a father son team, who blow things up and poison masses of people. They do the first simply to sow fear and the second to extort money. Greed however is not their driving motive. The motive really boils down to “they’re crazy”. This plot device requires that people accept mental illness as a source of danger to others. It also requires mental illness to exist in a vacuum where actions are driven only by illness and no other social forces. In reality people with mental illnesses are far more likely to be the victims of crime than the perpetrators of it. When they do commit crimes, it is rarely for so simple a reason as their illness. The Flash is far from the only show on television that does this.

The CW’s other DC comics inspired Arrow has done it too. Carrie Cutter AKA Cupid, has an unhealthy obsession with the Arrow and begins killing people to get his attention. Even after she is caught, no one seems to think treatment is necessary. She is instead placed in a covert group of villains turned weapons of the state, her obsession continues unchecked. It is not just super hero franchises that exploit these fallacies. Lazy police procedurals often throw in a mentally ill perpetrator when they need a convenient motive.

I know that film and television based on comic books are supposed to be fantastical and are not meant to mimic reality. I know that madness creates a convenient excuse for elaborate logic defying situations which add tension and are visually interesting. That does not excuse how problematic it is to equate mental illness with danger. The other issue of the Flash is the complete lack of disabled characters with the exception of Eobard Thawne who is impersonating the deceased Harrison Wells and faking his need to use a wheelchair. First off gotta give the creators ability to think outside the box by using a white dude in a wheelchair. That’s very unique.

Prof Xlink

Artie  link

04-raymond-burr-ironsidelink

The idea that disability is diverse both in physical presentation, race and gender is often lost on creators of television. All those actors are also able-bodied. Disabled people tend to have their stories told. They don’t get to tell their own stories.

Yes, yes, I know Eobard Thawne isn’t really paralyzed and could not actually be played by a wheelchair user. The fakeness of the disability is its own problem. Disability in film and television is rarely complicated. The characters usually embody very specific stereotypes that fit into the following general descriptions; victim, saint or villain. Disability is often the driving factor in these characterizations. In media, fictitious portrayals of disability rarely get more complicated. Put another way, if you removed the disability, the character would cease to have a point in the story. These stereotypes are rarely indicators of real life experiences of disability and usually are used as metaphors. For the purpose of critiquing the Flash, it is important to understand the idea of disability as villainous. Disability and evil are closely connected in film. Villains in the James Bond franchise are so frequently disabled or disfigured that the producers unapologeticly refer to it as a plot device. If a disabled person shows up, you know they’re bad.

This trend predates Bond. It was used extensively in the Frankenstein film franchise. In the first film in 1931, the character Fritz is introduced. He is an obviously disabled man (described as a dwarf in Bride of Frankenstein). Though in reality is played by an able-bodied man walking around bent at the waist. He is the monster’s first victim. He is killed in retaliation for his unnecessary and gleeful abuse of the creature. In the next two films he is replaced by Igor who has a visibly broken neck, having survived a hanging attempt after being sentenced for grave robbery. He is as inexplicably evil as Fritz was. In more recent films, consider Elijah Price/ Mr. Glass in Unbreakable. His disability is literally the inspiration for his crimes. The fact that there is such a clear and continued history of disability=evil in film is problematic at best. It tells people that it is ok or even rational to be scared of physical and mental difference.

By having Eobard Thawne’s paralysis be fake, the Flash is taking it one step further. Disability isn’t real it’s a metaphor for hidden evil. Thawne also capitalizes on the stereotype of disability as victimhood to achieve his nefarious goals. He counts on people underestimating him or accepting that his paralysis is a just punishment for the explosion at Star Labs that killed many people. For a show that so publicly prides itself on nuanced portrayals of people of colour, sexuality and gender, they are more than willing to throw disabled people under the bus.

The thing is, they don’t even need to change the existing framework of the show to improve. They just have to add nuance. They could add characters with real disabilities  (preferably played by actual disabled people) who just exist. Iris could have a coworker or coworkers at the paper with disability. There could be disabled extras in the background at Jitters just to show that disabled people exist outside the dichotomy of victim or villain. By just adding non fake or non stereotyped characters with disabilities they would not only challenge the stereotypes so common to the media, they could also use it to highlight just how awful Eobard Thawne really is.

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