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Ability SAE

A GREAT MANY PEOPLE become instantaneously offended and defensive when the topic of privilege emerges. We want to take a moment to mention that privilege is real and not relegated to any single class, race, gender, or other demographic. We all have some degree of privilege, as indicated in coauthor Jana’s TEDx Talk, “The Power of Privilege.” Privilege, simply stated, is any advantage that an individual or a group has that eases their success, advancement, or path in life.

This chapter is about abilities and diverse ways that abilities manifest in humans. Different people are differently abled and that is an accessible way to help people understand privilege. If you are temporarily able-bodied, in good health, and able to move yourself from one building to the next without much of a struggle—you have privilege. If you do not have to consider and research the physical accessibility of each space before you travel—you have privilege. If your mind works smoothly, unhindered by past brain injury or stroke, unlikely to lose momentum because of depression, able to concentrate without difficulty, you have privilege. Ability is a unique, core dimension of diversity in that any of us can instantly lose these physical and mental privileges with zero notice.

Often when we think of differently abled people, or people living with disabilities, we think of someone who has managed a certain condition for some time. Perhaps it’s a wheelchair, or blindness. But have you considered, at length, the people who are going along as able-bodied, and suddenly tragedy strikes and they lose a limb or part of their mental capacity? Even depression is an ability challenge, diagnosed or not. Depression, anxiety, and other cognitive and emotional mental health constraints are typically incurable. We can treat the symptoms, but we cannot erase the condition, thereby rendering them permanent disabilities. In the United States, people living with such conditions are federally protected by the Americans with Disabilities Act (ADA).

There is a wide range of disabilities, and the lived experiences of people with those disabilities often remain somewhat of a mystery to those who have the privilege of being able-bodied and neurotypical. A lot of the subtle acts of exclusion that happen to these folks happen because of a lack of closeness, of familiarity, of basic understanding. Hearing from people who are disabled themselves is critical to build that basic understanding. A simple way you could do that right now from wherever you are is to go to Twitter and search the hashtag #disabilitytwitter. Sometimes getting a glimpse into those conversations brings a new lens of understanding.

Coauthor Baran was recently attending a conference in Chicago called Disability:IN, focused on increasing employment opportunities for people with disabilities and inclusion for those same people once hired. In a session called “Disability Etiquette 101,” people on a panel talked about even basic things like how to talk about people with disabilities. Some on the panel mentioned that many people prefer person-forward language like “person with a disability.” They don’t want to be defined by their disability. Other people said they prefer to be called “disabled person.” To them, it is part of their identity, and they talked about how it links them to a community of people, to activists who have come before them fighting for their rights, to a culture. People talked about disliking words that made them feel “broken,” such as “hearing impaired,” and instead preferred simple descriptors like “deaf” or “hard of hearing,” “blind” or “low sight.” The key takeaway about language was that there is no one preference for everyone and so just asking people what they prefer is a good way to be inclusive.

Let’s consider a few examples of subtle acts of exclusion that happen to people living with disabilities.

EXAMPLE: Using a microphone

Alexis was participating in a two-day work retreat, one of the main themes of which was diversity and inclusion. There were approximately fifty people at the retreat, which was taking place in a medium-sized conference room. The retreat had a facilitator who led the team through exercises and a lot of discussion. At the start of the retreat, the facilitator asked everyone to speak their comments into a handheld microphone that was being passed from person to person. Many people rolled their eyes when passed the microphone. Some said jokingly, “You know I’m plenty loud and do not need this thing!” before their comments. Others said things like, “Oh, I hate these things,” and then maybe half used the microphone. Many just started speaking without even waiting for the microphone to be passed.

Alexis didn’t have any trouble hearing people without a microphone. But she was sensitive to the fact that other people might. And in fact, she knew that one of the people in the group struggled to hear. Alexis was one of a handful of people who spoke up when someone started speaking without the microphone. They would say “mic” right when the person started speaking, to remind them to wait for it to be passed. It ended up happening so consistently that Alexis felt the need to speak up. At one point during the conversation, she raised her hand and said, “I know it can be awkward to use a microphone and that people aren’t used to using it, aren’t used to hearing their voices with it. But there may be people in here who don’t hear as well as others, and that amplification can be really helpful to them so that they can fully participate in the meetings.”

For the rest of the retreat, people were a little better about using the microphone. They explicitly understood what Alexis had said and they were actively trying to comply. And yet, they would still do subtle things like roll their eyes or pause and make a face at the microphone before speaking. A few even tried to make jokes about it like when someone took the mic and said, “First, I’d like to thank the Academy.” People laughed. The CEO even made a face when he got passed the mic.

Throughout all of this, Alexis was really frustrated. She kept thinking of Marina, the person she knew had trouble hearing. She imagined Marina feeling bad every time someone made one of these jokes or gestures. Although people had overtly stopped saying they didn’t want to use the mic, they couldn’t stop from making the subtle acts of exclusion, implicitly communicating to Marina “You are not normal,” and even “You are a burden.” If you are someone like Alexis who sees what’s happening and even speaks up once, what are you supposed to do if it keeps happening? You know the burden for speaking up shouldn’t fall on Marina. But you also might worry that if you speak up again, you’re going to come off as disruptive. We can imagine feeling pretty hopeless in this situation.

What if Alexis and her colleagues had practiced SAE accountability? What might have gone differently? In the first place, people would likely have listened more actively and empathetically when Alexis spoke up. They would have understood better that their eye rolling and jokes were communicating something implicitly—that “You are a burden” or that “You are not normal.” And they would have really practiced following through with adjusting their behavior.

Even if someone continued making SAE, however, more observers would have spoken up to be allies, not just Alexis. This would have amplified the impact and taken some of the burden off that one person. In fact, one of the people speaking up may have been a senior leader, which would have carried even more weight. And finally, there would have been follow-up with Marina, making her feel included rather than excluded. Collectively, the room would have created an inclusive culture that doesn’t let anything slide. And it wouldn’t have been that hard to do.

EXAMPLE: “You’re such an inspiration.”

Jerrold works in a federal government agency, and part of his job is to spread awareness about accessibility issues in the workplace. He is a little person himself, and when he gives presentations about accessibility issues or when he participates on panels discussing those issues, he often weaves in personal reflection and stories. He enjoys spreading the word on these important topics. But one thing he doesn’t enjoy about the public presentations are the inevitable SAE that come.

After one recent talk, someone came up and told him, “You’re such an inspiration.” It happens a lot. People gush about how inspired they are by what he has accomplished or that he is so brave for doing the work. He sees on social media what people have called “inspiration porn”—videos of people with no legs getting a black belt or people with Down syndrome making a shot in basketball. Charlie Swinbourne, in the Guardian,¹ for example, talks about how advertisements use inspiration porn and how it has happened personally to him, as people tell him he is brave for being deaf and working in media. He writes that this patronizes people, communicating that expectations are so low that the fact that people with disabilities can accomplish these things is surprising and inspiring because of their “abnormality.” “These disabled people’s achievements are not enough on their own—their value really lies in what they can make everyone else feel like doing.”

Groups and hashtags have formed to combat some of this particularly subtle kind of exclusion based on ability. For example, #stopmakingitweird has a website that asks people to take a pledge:²

▶   I PLEDGE to treat people with disabilities just like anyone else.

▶   I PLEDGE to only use language that is respectful toward people with disabilities AND that I would use to describe anyone else.

▶   I PLEDGE to not engage in excessive celebration when a person with a disability completes an ordinary task or activity.

▶   I PLEDGE to not subscribe to, share, or aid in the proliferation of “inspiration porn.” Inspiration porn is an image of a person with a disability, often a child, doing something completely ordinary—like playing, or talking, or running, or drawing a picture, or hitting a tennis ball—carrying a caption like “Your excuse is invalid” or “Before you quit, try.”

Another hashtag, #AbledsAreWeird, facilitates people with disabilities sharing some of these subtle behaviors and getting support for the SAE that they experience. At the heart of it, people with disabilities are asking just to be treated normally with normal expectations. One man who has low sight explained that as he was exiting the restroom at work, a colleague held the door open for him. As he walked through the door, the colleague said, “Good job, buddy.” He explains, “If his expectations of what I could do are so low that he thinks I need praise for walking out of the restroom, what are his expectations for me actually performing my job?”

While people want to be treated normally with normal expectations, there may be specific situations in which it would be nice to have a little help. A simple “Anything I can do to assist you?” goes a long way instead of assuming that people can’t do something on their own or assuming that you know what kind of assistance they must need.

People will be happy to tell you what they need. A blind man that coauthor Baran was interviewing recently explained that when he is walking down the hall at work, people may try to silently get out of his way, pressing themselves up against the wall. Though their intentions are good, they are implicitly communicating, “You are a burden,” to him. He asks that instead, people just say, “Hi, Bill,” and the audible clues help him navigate the hall much easier and more normally. Another man with low sight added that if people say something like, “Hi, Bill; it’s Carol,” when passing in the hall, he can more quickly respond appropriately. Even if he knows Carol quite well, it can take a minute to process the sound of the voice, so by telling him your name, you help him greet you or maybe stop you to tell you something about work that he wanted to say before you’ve already passed each other in the hall.

EXAMPLE: “I’m deaf. I can read.”

Hannah is deaf. She tells a story about how when she flies on an airplane, her ticket says “deaf” on it so that the crew knows, in case of emergency. She boards the plane first, and she often tells the flight attendants that if there is an emergency to make sure to tap her on the shoulder since she is deaf.

One time on a work trip, as people were boarding the plane, she felt a tap on her shoulder and the flight attendant handed her the emergency instructions card in braille. Think about that. What kind of subtle act of exclusion was happening here? The flight attendant was implicitly communicating, “You are invisible,” in that she didn’t actually see Hannah’s specific situation. She was also communicating, “You are not an individual,” in that she lumped Hannah into some general category of disability and gave her the one resource that she had for a disability, without thinking whether it applied to this particular person.

Hannah explains how she could have gotten angry but instead chose to respond to the flight attendant with humor. She rubbed the braille card on her ear and said, “Hmmm. Doesn’t work.” She then clarified that she is deaf but can read. Addressing the SAE in this way can be highly effective too, rather than not saying anything. Initiators may feel strong emotions for being so thoughtless. That’s exactly what makes SAE accountability so effective for lasting behavior changes for the better.

Here are some additional example SAE:

▶   You are not an individual. While at a conference, Jay tries to network with other professionals. The ASL translator volunteers to be a proxy for Jay. As they make their rounds and have conversations, Jay starts to notice that the people he is talking to are only making eye contact and interacting with the translator, not Jay. These SAE additionally make him feel invisible, as he is literally not being seen when people only make eye contact with the translator. And while it is perhaps a natural instinct for people to look at the translator, a little practice and thought makes it so that Jay can feel seen and valued as an individual.

▶   You are inadequate. Sarah is a young woman who gets around in a wheelchair. While Sarah is at the mall, sales representatives keep asking her if she needs help reaching anything or trying on clothes. They would speak slowly and use an almost baby-talk tone of voice. Sarah knew they were trying to be helpful, but it came across as if they thought Sarah couldn’t take care of herself and needed a stranger to help her try on a dress.

▶   You’re a threat. Kris, a very fit, able-bodied man, goes to pick up his middle-school daughter from her theater audition. Kris is a mixed-race, muscular man with brown skin and tattoos. He is also a construction worker who left a worksite to get his daughter, so he was construction dusty. The chaperones who staffed the door were letting parents into the massive theater with no identification checks or questions. When Kris arrived at the glass door, they kept it locked and attempted to shoo him away. They certainly assumed he did not belong there, as most of the auditioning children were white. But they also saw him as a threat to everyone’s safety, due to his physical stature and likely his race, so they denied him entrance.

Bias and discrimination can be complex and multifaceted. How might the chaperones have responded if the parent was a mom, or using a wheelchair? People often assume that body- and ability-based bias is always against those with special needs. Sometimes the height and strength of an able-bodied person is considered threatening. This is one of the premises behind the Black Lives Matter movement. Able-bodied Black men are considered a threat in the United States and far too often executed instead of approached with kindness and compassion.

▶   You’re a curiosity. Bunny is a 6'3" retired model with an amazing heart and an invisible disability. As a result, she requires the assistance of one or more service dogs. Her dogs are Great Danes due to Bunny’s stature. Guinness, Titan, and her dearly departed Goose have all served her loyally and diligently as life-saving early warning signalers and walking canes. When her service dogs are working, it is usually clear because they wear service dog collars, even though they are not legally required to wear indicators. The service dog collars allow observant people to know that her assistants should not be petted or distracted. Nonetheless, people approach the animals, ask her a million questions, and incessantly disbelieve her disability status because she’s tall, brilliant, stunning, and seemingly able-bodied. So she becomes a walking curiosity, endlessly pelted with questions and met with incredulity. Even as a professional disability advocate through her company Pawsible, she doesn’t want to spend all day fielding questions about her ability status.

Notice the Dynamic

Let’s look at a few ability-based SAE and see whether you can identify the operating dynamic based on the chapter 1 taxonomy.

▶   You are invisible.

▶   You are inadequate.

▶   You are not an individual.

▶   You don’t belong.

▶   You are not normal.

▶   You are a curiosity.

▶   You are a threat.

▶   You are a burden.

Read each of the situations and think about what is happening. How might each group or individual be feeling?

▶   Situation 1: Always expecting a person using a wheelchair to look up at you when you could inconspicuously come down to their level.

▶   What kind of SAE is happening?

▶   How might the person in the wheelchair be feeling?

▶   How might the able-bodied person be feeling?

▶   How might the informed bystanders be feeling?

▶   Situation 2: A waiter sees a blind man sit down with his wife and children and asks the wife whether the man would like a menu in braille.

▶   What kind of SAE is happening?

▶   How might the blind man be feeling?

▶   How might the waiter be feeling?

▶   How might the man’s family be feeling?

▶   Situation 3: Making a joke to someone in a wheelchair, like, “Watch out, you might get a speeding ticket!”

▶   What kind of SAE is happening?

▶   How might the person in the wheelchair be feeling?

▶   How might the person making the joke be feeling?

▶   How might the bystanders be feeling?

▶   Situation 4: Casually saying something like, “I’m so depressed; they ran out of chocolate,” at a company ice cream social in front of someone who suffers from clinical depression.

▶   What kind of SAE is happening?

▶   How might the person who experiences the SAE be feeling?

▶   How might the person who is upset about not getting chocolate ice cream be feeling?

▶   How might the observers in the know be feeling?

▶   Situation 5: Asking someone with an invisible cognitive disability to read something quickly: “It’s so easy, it will just take a minute.”

▶   What kind of SAE is happening?

▶   How might the person who experiences the SAE be feeling?

▶   How might the person who is making the request be feeling?

▶   How might the observers in the know be feeling?

Here is how the taxonomy can be applied to these situations:

▶   Situation 1: Not taking time to make a small modification to your behavior can make some people feel invisible, as if you are trying to pretend not to see their circumstances. At the same time, do not make their situation your only focus or topic of discussion. You don’t need to squat down next to them and draw even more attention to the circumstance. Instead, it’s better to try and take a seat casually by pulling up a chair, if there is one close to you. Otherwise, squatting down can seem demeaning or even as if you are viewing them like a child. One man in a wheelchair tells the story of an example of feeling valued when he went into an Apple Store to shop for an iPad. The employee came over and, without making a big deal out of it, took the iPad off the counter and brought it down so he could test it out. That little gesture made him feel visible, respected, and normal.

▶  Situation 2: This assumes the person is inadequate and not even able to communicate about what he needs. He also likely feels invisible. The waiter was probably trying to be helpful, but as is the case with the example where the flight attendant didn’t think about what it meant to be deaf, this waiter is not thinking about what it means to be specifically blind. In this case, the man’s wife, who is used to situations like this, responded, “I don’t know. Why don’t you ask him?” She and the whole family are allies who witness these SAE frequently and share the burden of speaking up and educating people.

▶   Situation 3: The person making this joke is obviously not trying to do harm. In fact, they are trying to show comfort by speaking up in a casual joking manner, the way they might joke with someone else. Or they might be feeling discomfort and trying to alleviate that by making a joke. By leading with a joke or a comment about someone’s disability, they are communicating that the person, as a person, is not visible, compared to their disability, which looms so largely visible. Observers who know the man in the wheelchair may be internally cringing because they see this happen over and over, with different variations. If they are trained in the SAE accountability system, they can feel empowered to speak up as an ally.

▶   Situation 4: Unlike situation 3, this may be a case where the speaker has no idea at all that the person they are talking to suffers from depression. It is an invisible disability, and the person who suffers from depression may want to hide that from people they work with, afraid that they will be treated as “less than”—not trusted with big projects, not given promotions, etc. In this case, the person who was wanting chocolate ice cream is not feeling anything unusual (aside from the totally understandable disappointment that they ran out of chocolate). They have no idea that their words can cause such strong emotions in someone. There may be a trusted coworker who is an observer and sees the impact of that word on their friend. But because this is not something that is open at work, the observer can’t speak up as an ally. In that case, it would be better to check in on your friend privately later and see if there is any support you can give them.

▶   Situation 5: Like in situation 4, the person with an invisible cognitive disability, perhaps from a past stroke or head injury, might not be open about that disability with coworkers for fear of being treated differently. And they may struggle with some tasks that seem easy for others, especially when called on to do them quickly on the spot. So they might be strongly feeling not normal and inadequate. It’s good for all people to recognize that more people than you think are walking around with invisible disabilities, and it’s helpful to not make assumptions about what should be easy for others.

In sum, there are a wide variety of disabilities, physical and mental, that affect way more people than many of us realize. As such, it’s good to think before speaking and acting in order to not make assumptions about what people can do, what they may feel, and what they may need. Treating people as normal, not making assumptions, and asking questions can go a long way toward making people of varying abilities feel included, at work and in other contexts.