Category: disability etiquette

disability etiquette, Solidarity2

STOP. ASK. LISTEN.

When I was a child, probably around the time I started elementary school, I was taught a few basic lessons about how to get along with my fellow humans. My family and school were fairly typical of my culture, so I believe that most of my peers were taught similar things. These lessons included:

  1. Keep your hands to yourself. In other words, don’t touch people without a good reason, and without their permission.
  2. If somebody touches you and it doesn’t feel good, tell them to stop. If they won’t stop, tell Mom or Dad.
  3. No means no. If somebody says “no” or “stop” to you, about literally anything, you must stop. It doesn’t matter if that person is older or younger than you, and it doesn’t matter if they’re saying no to a tickle fight, playing your favorite game, or sharing personal information, you must listen up.
  4. Don’t tape-record people without asking if it’s OK first. If you tape-record somebody without permission and they find out, you could get in really big trouble.

**Note that like many blind kids in the ‘90’s, I loved to carry around my little micro cassette recorder taping my conversations. When I got older and stopped doing that, I learned that this rule also applies to photos and videos.**

So, these were the childhood lessons on which most of us were socialized. We learned about the importance of boundaries, respect, and consent for ourselves and for others. Obeying these rules becomes so ingrained we rarely think about it.

And yet, I have noticed that for many of us with visible disabilities, these rules get broken on a routine basis. Strangers often seem to have no qualms about touching, grabbing, pulling or steering our bodies or our mobility aids. Sometimes this is done in an attempt to help us with real or imagined needs related to our disabilities. Other times, the uninvited touching is used as a means of communication-as with the kindly meant, but patronizing, shoulder pat. Often there is no ill intent behind this behavior, but it is easy to imagine why an unexpected pull on one’s arm, briefcase, guide dog harness, or wheelchair might not “feel good”. Outside an intimate relationship, these touches often feel disorienting, threatening, even painful. However, if we assert boundaries, either through our words (“please let go of me”) or through our body language (pulling away or flinching), our “no” signal may be met with resistance or even anger. Somehow, if we’re disabled, the rules don’t apply.

And, as for the rule about recording people without permission? Recently there have been several occasions in which bystanders photographed interactions between disabled and nondisabled people and posted the photos on social media as a form ofinspiration porn. For example, in a recent incident, a restaurant server assisted a disabled customer with eating at her request. A bystander snapped a picture of the pair and posted it online as a way to recognize the server’s good deed, without consulting with either party. The post went viral. This individual kept the picture online, even after admitting that she just “didn’t think about” getting consent first, and even after dozens of other disabled individuals expressed concern about the woman’s privacy. This is not an isolated incident, but part of a pattern.

Boundaries are integral to our well-being. On the most basic level, our physical and sexual boundaries protect us from bodily harm. We put boundaries around our property to safeguard it from theft. And, on the highest level, boundaries define our identity, give us control over our public selves, and afford us a sense of human dignity. Consent is the process by which we open or close those boundaries at will. We choose who to let in, when to let them in, and how far to let them go. People of all ages and abilities have a right to basic consent. Even the newborn baby who accepts the nipple when he is hungry, or pulls away when he is full, is exercising a primal form of consent. Respecting each other’s boundaries and consent signals is essential for peace and harmony within a society.

But, too often, consent gets forgotten when disabilities are involved. Sometimes people get caught up in their own rush of emotions, their desire to help, or the warm glow of inspiration, and in their emotional chaos they just forget about consent. Other times, the motivation is much less kind. Disabled children and adults worldwide have much higher abuse rates than nondisabled people,and a hallmark of abuse is a breach of basic consent.

Facing someone with a disability can be emotionally overwhelming. Sometimes when we are emotionally overwhelmed, we can remember only the simplest rules of conduct. Around the time that I learned about boundaries and consent, I also learned about fire safety. “Stop, drop, and roll” is something I will remember even if my clothes are on fire and I’m freaking out.

So, I want to introduce a simple maxim you can keep in mind while interacting with someone who is disabled, if you are feeling unsure what to do.

Stop. Ask. Listen.

  1. STOP. Instead of immediately jumping in to help someone, or to share their inspiring story, stop, take a breath, and let your emotions settle.
  2. ASK. This is like ringing your friend’s doorbell instead of breaking down the door. Questions like “would you like my help?” or, even better, “how can I help you?” “Is it OK if I pet your service dog?” “I think it’s really sweet seeing you play with your daughter. Would it be OK if I take a photo?” All of these open up an inquiry about their boundaries.
  3. LISTEN. This is the most important part. If you ring your friend’s doorbell and she doesn’t answer, you wouldn’t break down the door. In the same way, if the person says no to any of your requests, it’s time to back away. Is the person nonverbal or doesn’t speak your language? Watch their body language instead. Do they welcome your approach or do they recoil? Do they look happy, or pained? If you aren’t sure, try to find out what communication they use. Above all, trust that any person you meet gets the final say-so over their own boundaries.
disability etiquette, Disability history

On people with Disabilities, Also Known As Disabled People

Since I’m a disability training consultant, I spend some time reading etiquette tips for interacting with people who have disabilities. One of the strongest, most consistent mandates I see is regarding “person-first language”. All the books and tip sheets urge us to refer to people with disabilities as “people first” by using phrases like “person with autism” or “person with a disability” rather than “autistic people” or “disabled people.” This mandate has moved into the academic realm as well, with journal editors and grantmakers requiring person-first references to disability in academic writing. I’ve even known people who were corrected when they referred to *themselves* as disabled people.

Because disability is such a diverse, nuanced experience, I’ve always found the rigidity around disability language to be a little frustrating. The person-first mandate also contradicts the way I’ve always talked about my own disability. Without pause, I’ve always referred to myself and others like me as “blind people” and this phrase never struck me as offensive. So, I was interested to read this recent American Psychologist articleabout how disability language has changed over time.

Person-first disability language became popularized in the 1980’s and 1990’s, around the time of the Americans with Disabilities Act (ADA)’s passage. It came in reaction to earlier, medicalized disability language that defined people exclusively by their impairments. Terms like “the Down’s kid” or “those schizophrenics on the fourth floor” dehumanized people by labeling them as nothing more than their impairments and discounting differences between people with the same impairment. In this way, person-first language emphasizes each person’s humanity and individuality.

However, in recent years some members of the disability community have challenged the exclusive use of person-first language. Their argument has two main thrusts. First, we don’t use person-first language to describe any other group of people in English. We don’t say, “the person with femaleness” or “people who are Asian”. We certainly don’t say “people who are beautiful”; instead we are happy to call them “beautiful people.” In this way, person-first disability language sounds unusual and, paradoxically, brings more mental attention to the disability. The phrasing itself can also be awkward, especially in writing.

The second issue is that many people think of their disabilities as positive parts of who they are. Thus, they would not want to be separated from their disability identity in language. Instead, they prefer “identity-first” constructions that highlight their membership in a particular disability group, in the same way we use “identity-first” phrasing to describe someone’s race, gender, or beauty. This thinking is especially strong among some disability groups, such as blind people, Deaf people, and autistic people.

So then, what’s the bottom line? What language should we be using?

The short answer is “both.” Using both types of language respects both viewpoints on the issue. Using both constructions also breaks down the rigidity that often accompanies this discussion. I will use both types of language on this blog and in my training materials to offer respect to both preferences.

In addition, it is worth noting that people with disabilities, also known as disabled people, must be the ones leading these language discussions. We should respect their preferences on how they speak about themselves and how they wish to be described verbally and in writing. All too often, people without disabilities, aka nondisabled people, have been the ones promoting a rigid language preference.

Last year, I gave an invited talk at an occupational therapy conference about some research I had done. A colleague urged me to use person-first language throughout my talk. Out of curiosity, I asked some friends on Facebook what type of language they preferred to use, and mentioned that I had been mandated to use person-first language with the occupational therapists. A friend of mine, who happens to be a person without disabilities who teaches kids who are blind or visually impaired (also known as, a nondisabled teacher of blind students), had an interesting idea. She advised me to call my audience “therapists of occupation.” She further advised that since I was not a member of that group, I obviously had the authority to decide what these individuals should be called. Her facetious response illustrates the absurdity of telling others what to call themselves.

If you are in doubt about what to call a particular individual, person-first language is a safe initial bet. But, even better is to ask the individual. If you are writing or speaking about a particular disability group, read their literature, and find out what language they use. Most of all, recognize that language is an ever-changing reflection of the way groups view themselves, and are viewed by others.

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