More to flag

In the next section, I'd like to comment on some concepts and concerns that come up pretty often in the disability community and that I think deserve further unpacking. Some of these can be expressed through single words that have specific usages in disability communities and which can be loaded words. All of them are things I think journalists should consider when they’re reporting on disability.

Cures

When one is unfamiliar with disability, one might have a standard set of assumptions such as these:

• Cures are necessary, desirable and beneficial.
• Even if a cure has not been found for a particular disease or disability now, science and medicine will one day find it.
• Once a cure has been found, it will be administered to everyone with the disease and work equally well for all.
• This cure will be total and permanent.

Often, it’s more complicated than that. Those who have known someone with cancer or experienced it themselves will be familiar with the mingled fear and hope that come with waiting for follow-up results: Has the treatment gotten rid of the cancer, or is it still there?
Even if the news is good, the person will not be considered cured right away. Instead, they will be considered to have “no evidence of disease” or to be in remission. It will take many years of clear scans before they can be considered cured. And some cancers are not curable at all, although it is still possible to live for a long time with those cancers. Although some people will end up considered “cured,” that is different from saying we have a cure for cancer. This is partly because cancer is not one disease or even one kind of disease but rather many hundreds of similar diseases.

 
What about total and permanent cures, though? Surely disabled people would want those, right? Certainly, some people do. But others think that focusing on a cure distracts from the goals that they believe should be central to the disability-rights movement. Disabled people who are demanding rights are often contrasted with disabled people who are working on or want a cure. And society as a whole tends to relate more to the latter.

 
In popular culture, disabled people often get cured, sacrifice their lives (willingly or not) so that the protagonist can learn a lesson about life, or get abandoned after the protagonist learns the lesson about life. The abandonment of the disabled person may be presented as tragic but necessary: it had to happen so that the protagonist could continue their journey of growth and self-discovery.

Real life is not the movies, but when this kind of story — about a cure — is one of the only ones the public can see disabled people being a part of, it's no wonder the public generally views a cure as the only viable option for disabled people other than death.

I have heard many people express shock when they hear disability advocates speak out against cures, say they would reject one if it were offered, or argue that research shouldn’t be focused on finding cures but rather on care — treatments and services that help disabled people have a better quality of life with their disability. (Interestingly, although this debate is often known as “cure vs. care,” both words come from the same Latin word: cura, meaning care.) The thinking is: Why wouldn't anyone want to be cured? Surely, a non-disabled life is always better than a disabled life. Those people must be mistaken. It couldn't be that they know something that you don't.

 
By flagging and questioning this concept of a cure, I’m not saying journalists should always go around asking, “Would a cure be good or bad?” or “Should people want a cure?” I’m suggesting something more along the lines of asking:

• What would a cure mean?
• What would the financial and material costs be?
• What are people supposed to do in the meantime?

The answer should not involve any variation on staring sadly out a window, the image I've seen most often used to represent this.

In what other ways do we think about cures? “Fundraising for a cure” raises questions such as: “Would this cure be available to people living with this disability today?” and “Would this cure be available to living people at all, or is the medical research focused on eliminating the condition by eliminating fetuses with it so that no one with the disease is ever born again and others are born in their place?” Those are very different propositions.

As journalists we can also ask:

• Where is the money being fundraised going? To clinical trials? To “awareness”? To the treatment of symptoms? Somewhere else?
• How much money is needed for a cure?
• What is not being funded, and why? 
• What is the proposed timeline for having this cure available to the public?
• How much will it cost to produce the cure or to receive it?
• Might some of that money be better spent on improving the quality of life of those who have the disability?
• What is being done to improve those lives regardless of when or whether a cure is found?
• What about those who do not wish to be cured — what help and support will they receive when the cure is available?
• How does the story that we are covering fit into the larger picture of research about this particular disability and the feasibility of a cure?

 
“Mind of a child” and similar constructions

Related to earlier text about framing disabled people as perpetual children, we look at the language for that. First of all, just don’t say such things, even if you’re describing a disabled adult with an intellectual disability. This advice is not solely because the construction is offensive — it’s also not true. A doctor or educational professional may have made a determination related to a scale meant to measure intelligence, but even assuming it’s correct, a disabled adult has had many more years of experience than any child. They have lived more life. There is simply no equivalence.

Some people refer to mental age as something that describes intellectually disabled adults and shows their relative lack of maturity compared to their age peers. But “mental age” is part of the formula used to calculate IQ. IQ measures one specific variable: how a child is likely to perform in class relative to their peers. Thus, IQ is not a valid measure of intelligence in adults and should not be used when describing them. Saying a disabled adult “has the mental age of” or “functions on the level of” a child is always inaccurate.

 
IQ is also problematic when used related to disabled children. Assessors often mistake a lack of response to a given question for a lack of understanding, when in fact they have not given the child the correct tools to answer the question in a way accessible to the child.
While we are on the subject of children, although every person remains their parents’ child, even after attaining legal adulthood, once they reach this milestone, they are no longer children, and it is inappropriate to refer to them as such, even if they are disabled. Reporters may quote my mother as referring to “my kid, Sarah,” but they may not refer to me as a child, a kid, a “special child,” or a “girl.” As with other adults, it’s Sarah Trick on first reference, Trick on subsequent reference, and Ms. Trick if you work at the Globe and Mail or the New York Times. It is profoundly disrespectful to deny disabled adults the dignity of being referred to and treated as such in the public record.

Individual’s names

Thinking further about names and naming of people in our stories, we journalists have the conventions of naming a person first by their full name and then by last name only, and of clarifying names for family members with the same last name. But ask yourself, who is named and how? Who is at the centre of the story? How are adults named? How are parents and their children named? If parents and children are all adults, how are they named? How are disabled people named? When we make certain decisions about naming, we send a message about the people named and who is at the centre of the story.

Consider some examples in this guide. In Framing, I intentionally named Britney Spears and then referred to her next as Spears because she is the centre of her own story and an adult; in contrast, her father is not the centre of the story. Similarly, in Sources, Matthew Justin Clark was the centre of his story, and thus I gave his full name and then referred to him as Clark.

 
Former crime reporter and trauma researcher Tamara Cherry argues that, in contravention of current journalistic practice, people who have been killed violently should be referred to by their first name rather than their last[1]. She reached this conclusion after conducting research that indicated the use of surnames caused grief for families. While this may be true in cases of violent crime, I believe that the impulse we journalists have to consider disabled adults as children and refer to them as such comes from a formulation of disability as trauma, a deeply distressing or disturbing experience. In All Our Families: Disability Lineage and the Future of Kinship, Jennifer Natalya Fink suggests that the arrival of a disabled family member is considered a trauma, not only for the person who is disabled, but also for the rest of their family. The existence of a disabled family member is considered a tragedy. This may seem like a bit of a reach, but before you dismiss it out of hand, I want you to really think about it related to a story you are developing, or stories in the news and in popular culture, and the language used in these stories. Think about who is named in the story, how they are referred to, and who is centred. A formulation of disability as trauma leads to formulating a disabled person and their existence as a trauma.

Diagnosis 

In recent years, there has been a lot of debate over certain diagnoses and who has the right to receive them. Is self-diagnosis valid, and, if so, in what cases? Is attempting self-diagnosis a dangerous rejection of the medical establishment or the only way some people can hope to access medical care, community and ways of thinking about themselves that make sense of their life experiences? And what about diagnoses that were formerly common but are now no longer in use, or diagnoses that are disputed? What about diagnoses that are not in the most-current Diagnostic and Statistical Manual of Mental Disorders or included in the International Classification of Diseases but are nonetheless accepted by certain communities as valid? What is the right way to think about this? As well, when is it relevant and OK to ask about a diagnosis or when is it rude, invasive, or invasive? (This last question is beyond scope here, but worth considering.)

Let's talk about Asperger syndrome (see Glossary). First of all, it's important to lead with this truth: the Austrian psychiatrist Hans Asperger was a Nazi collaborator who distinguished the autistic children he believed were worth saving from the autistic children he consigned to death in the Aktion T4 program of killing disabled children and adults. Although Asperger did save many children by classifying them in this way, he was also directly responsible for the murders of many more[2]. For this reason as well as others, “Asperger’s syndrome” or “Asperger syndrome” is no longer considered a valid clinical diagnosis. It is never appropriate to say someone has it unless they (not their relatives or guardians) explicitly request you do so. Even then, use caution.

 
But those who do not wish to relinquish the diagnosis have a point as well. Their experiences are different from those with other or more-severe forms of autism. People who have the diagnosis “Asperger syndrome” and who identify with it want a term that really describes their life experience. Those who do not have the diagnosis but think that it or something like it is needed are often making this argument as a form of advocacy for a family member with a more-severe form of autism; they often make the point that not all autistic people are geniuses or savants and that autism causes deficits across all categories of communication, not just in social skills. They resent seeing their family member’s life experience equated with that of, say, Elon Musk, Greta Thunberg, or Anthony Hopkins. Not every person with autism will end up having the success or fame of these people, they argue, nor should they have to in order to live a meaningful and good life.

This is where we get to the compromise of this term: autism spectrum disorder. When somebody says a person is on the autism spectrum, they believe that the person has one of these autistic disorders and place their functioning on a continuum relative to other autistic people. However, there are also issues with labelling people as “high-functioning” or “low-functioning” in that functioning can change dramatically depending on circumstances. Many autistic advocates say that labelling someone high-functioning denies them support, but the label of low-functioning denies agency.

There’s also a division in terms of whether people choose to identify as a “person with autism” “autistic” or “Autistic.” This an example of “person-first language vs. identity-first language (see Glossary). Those who embrace autistic identity tend to look at autism from a more social-model perspective and see autism as something inborn. They tend to reject the idea of a cure because they believe that a version of them who was cured of autism would no longer be them. By contrast, someone who uses “person with autism” may believe that there is a separation between the person and their autism and that the objective of treatment should be to separate the person from the autism. How a person self-identifies is up to them, but the adult autistic community tends to default to identity-first language, so “Autistic person.”

 
Something else to keep in mind when your reporting involves diagnoses is that diagnoses are delivered in a specific context and usually for a purpose, even if the purpose is as benign as “to help the patient access treatment or services.” For example, if you encounter a family whose child is struggling in school, the family might want to help their child get services so she can succeed but doing so requires getting a diagnosis first. The family might seek out a diagnosis when they otherwise would not have done so.

 
There is a difference between a diagnosis given by a person’s doctor and one given, for example, by an expert witness for the other side in a court case. In both contexts, there is an agenda. The doctor is trying to treat or help the individual patient, while the lawyer choosing the expert witness may be more interested in discrediting the patient. An added complication is that doesn't necessarily mean the second expert is wrong, merely that diagnoses are given for a reason and they can have different implications — and journalists should consider that while reporting.

Abbreviations, including acronyms

As a journalist reporting on disability, you will encounter many abbreviations. This field is thick with them, and they need to be both understood and scrutinized. They can be a helpful form of shorthand, but they can also obscure meaning as any jargon or specialized language can. For what is the implication of saying someone is an “ALC patient awaiting transfer to an LTC”?

 
See the Glossary for many example abbreviations and definitions.