Until recently, I thought that person-first language (PFL) was the most respectful way to refer to someone with a disability. Examples of PFL include “person with a disability” or “girl with a visual impairment.” PFL intends to center the person and their unique experiences and to communicate that the disability is not their defining characteristic.
However, I’m learning that disability etiquette is not one-size fits all. Disability justice advocate Emily Ladau writes that PFL “implies that ‘disability’ or ‘disabled’ are negative, derogatory words.” Therefore, many people prefer identity-first language (IFL), like “disabled person” or “Deaf community” because it emphasizes that disability is nothing to be ashamed of and that disabled people are proud of their identities and cultures.
According to the NIH’s guidance on communicating about disability, PFL is still “best practice when writing about people who have defined diseases, such as ‘children with epilepsy’ or ‘men with diabetes.’ It is also best when writing about people with mental health disorders, such as ‘people with schizophrenia’ or ‘women with bipolar disorder.’”
The goal is to communicate in a respectful and inclusive manner, by using the terminology preferred by the individual or community we are addressing. So whenever possible, ask about those preferences and use PFL or IFL accordingly.
“Wait a minute,” I thought. “This is news to me.”
He knew to call it a cane, rather than a stick. That was surprising, though not nearly as astonishing as the revelation that giraffes have opinions about white canes!
This is just one example of ableism that our kids frequently face. While the ramp and landing were accessible and did not physically exclude my daughter from feeding the giraffe, the comment implied that her cane is a barrier to participation and that using one is a less desirable way to travel.
It said, “You are not welcome as you are.”
I have a lot to learn about ableism, which disability rights advocate Emily Ladau defines as “attitudes, actions, and circumstances that devalue people because they are disabled or perceived as having a disability.” (For more, read Ladau’s approachable guide, Demystifying Disability: What to Know, What to Say, and How to be an Ally, 2021)
As a parent, I’m receiving on-the-job training on how to handle these scenarios. In the process, I’m learning how to model for my daughter ways that she can stand up to offensive, discriminatory, or just plain annoying comments and behavior.
As I immerse myself in resources on ableism, I realize that I’m still learning how to recognize these types of microaggressions in the first place. As I do, I’m reckoning with how prevalent ableism really is — not only in the world around me, but in my own mind. Ableism is based on the concept that people with typical abilities are superior. It’s a belief that has persisted throughout history, and none of us are immune to its effects.
The Anti-Defamation League (ADL) teaches about three categories of ableism:
All three types of ableism perpetuate the oppression of disabled people, who face barriers to full participation in society due to lack of accommodations, increased levels of unemployment and poverty, and danger to physical, mental, and emotional health. Healthline notes that “eventually, this lack of recognition and acceptance can contribute to loneliness and isolation, chronic stress, anxiety and worry around future instances of ableism, depression and a sense of hopelessness.”
While it takes a concerted, long-term effort to break down systems that reinforce institutional ableism, we can make an immediate difference by addressing interpersonal ableism when we see it. Let’s explore how we can become strong allies for our kids with CVI (and all disabled people) when they experience day-to-day microaggressions.
Jump around areas of interest below and refer to the resources at the end of this article for more in-depth information directly from disabled writers, scholars, and activists. They provide a richer understanding of ableism than I can, and many of the following examples are from their work.
“Watch where you’re going! Are you blind?”
Ableist language “reveals our unconscious biases,” “makes us internalize harmful biases about disability,” and “stigmatizes already marginalized people.” (Rakishitha Arni Ravishankar, Harvard Business Review)
How can we diminish the power of ableist language?
There are many words we should scrub from our conversations because they are slurs. In an NPR interview, Cara Reedy, the director and founder of the Disabled Journalists Association, explains that “words with ableist and eugenic origins, such as ‘moron’ and ‘idiot,’ are embedded in our vocabulary and need to be omitted.”
We also use idioms, like turn a blind eye, that we can replace with clearer language, like consciously ignore.
Autistic activist Lydia Brown created this glossary of ableist phrases, which I found helpful in alerting me to the harmful language we’ve heard or used at some point in our lives.
“You don’t seem blind to me. How much can you see, anyway?”
“Have you always been visually impaired?”
You’ve probably heard some version of these questions directed toward your child. (Too often the question will be directed toward you, talking about your child instead of to your child. Assuming that disabled people can’t speak for themselves is another flavor of ableism.)
Personal questions like these put disabled people on the spot to share more than they are comfortable divulging. They also imply that the person’s disability is their defining characteristic. What bothers some disabled people may not bother others, but we should all take care to think before we speak.
If the question makes you or your child uncomfortable, there’s a reason – it’s inappropriate and it doesn’t take the recipient’s feelings into account. “People with disabilities do not owe anyone an explanation, even if it’s a child inquiring,” writes Janet Jay In the INvisible Project’s 5 Types of Ableist Comments and How to Respond.
It’s your right to remain silent. You don’t have to say anything.
Ultimately, you and your child will have to determine how much, if any, information you share. When my daughter was younger, she described her CVI with a canned answer about “the boo boo on her brain” that makes it harder to understand what she sees. You can be candid, use humor, or turn the question around on the person asking.
And if your child is the one asking questions, nudge them to go a step further and ask the disabled child to play. Parent Hillary Kleck shares that when her daughter, who has vision loss, spent time on the playground “kids would come up and ask questions, out of curiosity – which isn’t a bad thing. But they didn’t want to talk or play with her. They just wanted to know.”
You may also find inspiration by following #ComebacksForAbleism on Twitter, where people share how they handle intrusive questions.
“Here’s the elevator.”
Sometimes it is appropriate to ask questions. If the questions are tactful and sincere, asking is better than assuming you know the answer.
“There are also plenty of instances in which the best etiquette is to ask, rather than avoid, disability-related questions,” Ladau explains in Demystifying Disability. “When you’re planning an event, meeting, or outing, it should be standard practice to ask about accessibility needs, even if you’re not sure whether other people involved identify as disabled.”
She recommends saying something like: “Hey, do you/does anyone have any accessibility needs to participate? Let me know how I can support you!”
Of course, this applies to people with CVI too. Sometimes people show my daughter to the elevator, assuming she can’t take the stairs. Sometimes they ask if she’d like to take the elevator. The latter is preferred. Regardless, she usually says “No, thank you. I like to leave that available for someone who needs it.”
“There’s no such thing as large print in the real world, so try harder to read.”
All too often, disabled people are seen as weak or needing to be fixed.
Many disabled people and disability justice activists champion the social model of disability, which is a framework that can help us address this unwelcome pity party or, as Ladau says, the perspective that “disabled people are tragic souls in need of good deeds, as though we are victims of our circumstances.”
This model positions disability as a result of external barriers, which can be systemic, physical, attitudinal, or social. These environmental factors disable individuals by reducing their access to and inclusion in society. This contrasts the more familiar medical model of disability – where the body is something that can and should be cured or fixed to fit in with society’s norms.
“Not every disabled person needs or wants to be cured,” says comedian and activist Danielle Perez on MTV’s Decoded. “We’re people, not salami. This mentality assumes disability is a burden and places the onus on disabled people to fix themselves rather than considering the ways we as a society can make our world more inclusive.”
People have talked about my daughter’s vision in negative terms, saying absurd things like “her vision is keeping her from reading.” Veronica Lewis/Veronica With Four Eyes shares that a teacher once told her that she needed to try harder to read because “there’s no such thing as large print in the real world.” People with visual disabilities use their vision for all manner of activities throughout the day, but the fact is, novels and textbooks were not printed with CVI in mind.
Disabled people need real support to access education, jobs, quality medical care, transportation, social and recreational activities through inclusive practices and design – not useless statements about why they will never have those things because they are disabled and we don’t have a cure.
“Your daughter has superpowers.”
When disabled people are featured in the media, they are often held up as an inspiration. They are used to show that anyone can overcome adversity through grit and positivity. The stories are meant to uplift or motivate people. Late disability activist Stella Young named this phenomenon “inspiration porn,” and now that I know it, I will never look at feel-good human interest news the same way again.
Disability rights activist and sensitivity reader Cara Leibowitz writes on The Body is Not an Apology, “Inspiration porn, in a nutshell, is when a disabled person is viewed as ‘inspirational,’ ‘brave,’ or ‘special’ for achieving ordinary, everyday tasks. Inspiration porn is particularly insidious on the Internet, where it takes the form of glib memes branded with absurd slogans like ‘The only disability in life is a bad attitude.’”
But as Young said in her TEDxSydney talk, “No amount of standing in the middle of a bookshop and radiating a positive attitude is going to turn all those books into Braille. It’s just not going to happen.”
Leibowitz adds, “Inspiration porn is a form of objectifying and othering disabled people. It sends a signal that we do not deserve to live life like everyone else, so it’s cute or heartwarming when we do.”
I’ve been told my daughter has “superpowers” and I’m ashamed to say that sort of comment made me feel proud. As her mom, I do think she is amazing and gifted with many talents (no surprise there).
Now I see this comment as patronizing. Is she really superhuman for navigating the grocery store or attending our neighborhood school? If another parent gushes over my child’s “superpowers” in an everyday situation, I plan to graciously agree that she’s a great kid just doing the same thing as all the great kids around her.
“Can I pray for you?”
My kids were enjoying a sunny day at the park with their sitter when two people approached my daughter and asked if they could pray for her. She said no, but they ignored her answer and proceeded to lay hands on her head and pray. So, she ran away. It was traumatizing and she refuses to return to this park.
People should keep their hands to themselves. Ladau explains in “Demystifying Disability” that “respecting personal space is a good rule for human interaction in general, but the rule all too often goes out the window when it comes to interacting with people with disabilities.” This courtesy extends to equipment and supports like wheelchairs, canes, and service animals.
Strangers should never have touched my daughter, but they did anyway. In a friendlier situation, when someone wants to offer assistance or get the attention of a disabled person it’s best to communicate first, seeking permission – verbally or visually – to enter their personal space.
My daughter did not want strangers praying to heal her either. The request (which turned out to be a demand) was intrusive and reinforced the stigma of disability, communicating that she needs to be cured to have a happy, full life, and that people pity her because of her visual impairment.
“She’ll be such a cute little girl with glasses!”
When my daughter was diagnosed with CVI at 8 months old, I was open about the news with friends and family in hopes that I’d have a solid support system. Some of the responses, like, “She’ll be such a cute little girl with glasses,” trivialized the situation.
This is why we must not minimize the challenges that someone faces. The INvisible Project reminds us that, “Minimizing can sometimes take the form of ‘toxic positivity,’ or the denial of negative feelings as a reasonable response to difficult circumstances.”
I didn’t need to hear how adorable my daughter would look in glasses after pouring my heart out about the hurdles ahead. Even if glasses were going to be helpful, there’s so much more to parenting a child with CVI than making sure her outfit coordinates with her frames.
I try to remember the term “toxic positivity” when responding to my daughter’s feelings. When she comes home from school after a visually grueling day, she deserves the space to recuperate and someone to listen quietly when she recounts what made it so hard.
Explore concepts like toxic positivity with this Q&A: Permission to talk about the hard stuff, with Amanda Griffith-Atkins
“I wish I had CVI so people would help me with everything.”
Too often disabled people are met with low expectations. There are many reasons for this, including media portrayals of disabled people. In some cases, I think that people have low expectations because they can’t fathom how they’d live with a disability or how to collaborate with a disabled person to meet their needs.
Human rights lawyer Haben Girma was the first deafblind graduate of Harvard Law School. She reminisces in a PopSugar interview, “Harvard told me, ‘We’ve never had a deafblind student before.’ And I told Harvard, ‘I’ve never been to Harvard Law School before.’ We didn’t have all the answers, but we pioneered our way using assistive technology and high expectations.”
Sometimes an adult’s actions serve to lower expectations for a disabled child. A classmate once told my daughter that she wished she had CVI so that she’d have help with everything too. That was an urgent cue for us to work as a team to make room for more independence from adults and self-advocacy in the classroom.
Sadly, low expectations can lead to exclusion. Davidson College student Sarah Todd Hammer has a YouTube series called ABLEISM STORYTIMES, where she recounts her experiences and responses to ableism. She once had a teacher announce to the class that she could not be on the safety patrol (due to partial paralysis in her arms and hands). Sarah Todd says she was “embarrassed, annoyed, frustrated, and sad” that someone would assume she was incapable.
In the end, her parents met with the teacher, and she participated. In a recent magazine profile, Sarah Todd describes how she advocates for herself every day as an independent college student. “When I inform others I need assistance in any capacity, I don’t see it as an act of weakness but as an act of liberation. Recognizing your needs and making others aware of them is freeing.”
Sarah Todd has also had practice standing up to friends who exclude her. A particularly upsetting childhood memory involves not being invited to a close friend’s birthday party because, according to the host, she could have been “hurt by the pinata.” Sarah Todd learned to tell her friends “I would still love to be invited because then I can make the choice of whether or not I want to attend.”
Back at the zoo, I wish I had done more in that moment to be sure that my daughter — and future participants – can benefit from the richness of the experience. When I heard that giraffes don’t like canes, I think I mumbled something like, “That’s fine for her, but someday there will be someone who absolutely must have their cane, and then you’re going to have a big accessibility problem.”
My response was inadequate on many levels (I should not say something is fine when it’s not, nor should I have made a comment that positioned my daughter as “better off” than someone who needs assistance up the ramp).
I will become a stronger ally as I learn effective ways to call people out (or “call them in,” Ladau’s term for private conversations addressing the wrongdoing). It can be hard to know what to say, but I’m going to start with my own words and mindset.