disability etiquette Archives

Access Intimacy: The Missing Link

November is a time when we focus on gratitude and appreciating the good things in our lives. I’m going to write a longer post about gratitude next week, when things are (hopefully) not piled as high on my virtual desk.

This week, I want to share a blog post from Mia Mingus, a writer, educator and community organizer who identifies as as a queer physically disabled woman of color. Mia reflects on the rare experience of “access intimacy.” Simply put, access intimacy is “that elusive, hard to describe feeling when someone else ‘gets’ your access needs.” While it can be confused with other forms of intimacy, it is distinct, and can arise between strangers. When we live in a world where our access needs are often ignored, or met only after a struggle, finding someone who provides appropriate access in an organic way can be a true treasure. I try to intentionally feel gratitude for those moments.
Access Intimacy: The Missing Link

DeafBlindness, disability etiquette, We will overcome

When You’re Disabled, Emergencies Pose An Even Greater Risk

In the past few months, we have seen too many tragedies, both natural and man-made. It’s natural for all of us to worry and wonder how we can prepare ourselves for the next emergency. But, for those of us with disabilities who communicate or move in different ways from the rest of society, emergencies can bring unique challenges. In the article below, Kit Englard describes the measures she’s taken, as a DeafBlind woman, to ensure she receives needed information during an emergency. She also describes the actions that ordinary citizens can take to support people around us who may need a little extra assistance.
When You’re Disabled, Emergencies Pose An Even Greater Risk

disability etiquette

What’s That? Explaining the Who, What, and Why of your Social Media Pics

Imagine you’re on a business conference call. You’re working remotely from San Francisco, and you have a call with three colleagues, all in the same office in NYC.

When you dial in to the call, two of your colleagues are chatting, waiting for your boss. “Little Henry’s growing up so fast!” one of them says. “He just started doing this cute thing where he goes like this, and then he’s like, does that thing….” The other colleague giggles. Meanwhile, you have no idea what they’re talking about, because they’re gesturing to each other and this isn’t a video call.

Your second colleague chimes in, “Yeah, look at my daughter in the little bunny outfit, isn’t she cute?”

Then your boss gets on the call. “Let’s talk about this quarter’s performance metrics. Here’s a chart showing our company’s productivity for the last three months.” Again, this isn’t a video call, and no one bothered to send you the chart ahead of time. None of your three colleagues seem to recognize that you have no clue what they’re looking at.

Sounds awful, right? Well, this is often the experience of blind and low-vision social media users. Oftentimes, our relatives, friends, or colleagues post images with little or no explanation. Sometimes entire photo albums may go undescribed. People may share flyers for important events on Facebook, but instead of sharing the actual flyer document, they share a photo or screenshot of the text, which screen readers cannot decode and screen magnifiers may not be able to magnify. We notice that our other friends are commenting on those images, and we’re left out of the discussion. This rarely, if ever, occurs intentionally; in fact, sometimes even people who go out of their way to include the disabled person sitting next to them, or who fight for their children with disabilities to be included, forget to ensure access when they share content electronically. Others may remember, but not know how to ensure access.

A first step to inclusion is recognizing from the outset that people with disabilities may wish to interact with material you share, and being proactive about making that content accessible, instead of waiting for someone to stumble on your content and ask for access. In this post I am going to offer a few concrete tips for making your content accessible to people who are blind or have low vision. We will address other disability concerns, such as captioning audio, in future posts.

We often share pictures on social media in order to tell a story or capture an event for others to experience. Blind people cannot see the pictures, and people with low vision may not be able to make out all the details. Photo captions allow us to experience the story you are telling in your own words. I wrote a bit about using photo captions in this post. Critically, to tell the story to a bblind person, a photo caption needs to make sense on its own without the picture. Although many people use photo captions on Facebook or hashtags on Instagram, they sometimes write captions that are so cryptic as to be meaningless without the picture. If you aren’t sure whether your caption is descriptive enough for a blind person, here’s a test: Try sending yourself an email with the caption in the subject line, without the accompanying picture. Look at the email and see if it makes sense to you. If it doesn’t, it probably won’t make sense to someone who doesn’t know the story behind your photo post.

Here’s an example:
Bad caption: She loves dressing up.
Questions: Who is “she”? What is she wearing to support your claim that she loves dressing up? Why is her outfit interesting enough to post?
Better caption: Little Annie loves wearing her pink dress to school.
This tells us who you’re showing off, what’s interesting about the photo of her (her pink dress) and why it’s interesting (it shows a bit about her personality, she loves wearing it to school).
Optional, more descriptive caption: Little Annie loves dressing up. (Description: picture of a little girl wearing a pink dress with a flower pattern).

Some people write wonderfully detailed photo descriptions in the caption box. These are great, but not essential in my opinion. When I read stories on social media, I’m mainly interested in the who, what and why behind the images included. Who’s in them, what are they doing, and why are they included? Often those questions can be answered in a one-sentence caption.

It’s important to caption screenshots as well, because screen readers do not recognize their content. If you can’t get the original version of a flyer or some other text shared on the Web, or a link to the original content, type the text into the caption box.

Again, the best-case scenario is to make your posts nonvisually accessible from the outset. Occasionally you may forget to add a caption, run into a technical problem, or if you are yourself blind, you may genuinely not know how to describe something. In those cases, if you can, edit your original post and add captions once you have discovered your oversight or received the necessary information. You may also invite commenters to expand upon your description.

Ensuring nonvisual accessibility on your personal social media pages will help all of your friends and followers feel included in the conversation. If you run an organizational page or post to a group, Ensuring nonvisual accessibility is even more critical, because the posts there will set a tone for the entire community. Describing visual content is one way that we can make the world more accessible, one image at a time.

Advocacy, Disability Community Leaders, disability etiquette, Solidarity2

The ABCs of Good Disability Awareness

Yesterday was World Sight day. Tuesday was World Mental Health Day. In the United States, this Sunday is White Cane Safety Day, while this entire month is National Disability Employment Awareness Month. And the disability-themed calendar entries aren’t just limited to October; check out this list of disability awareness days, weeks, and months

Most people enjoy participating in disability awareness campaigns. They have fun making signs, passing out pamphlets, or speaking to kids in schools. Most people seem to agree that disability awareness is a good goal to achieve.

But in disability communities, the term “awareness” raises some eyebrows. It’s not that we don’t support educating the public; far from it. It’s that the aim of “spreading awareness” has been used to back some truly reprehensible depictions of disability. For example, in 2009, the organization Autism Speaks promoted one of its awareness events with a video featuring images of children playing by themselves, alongside an ominous-sounding, disembodied voice saying “I am autism….I know where you live, and guess what, I live there too….I work faster than pediatric AIDS, cancer and diabetes combined…There is no cure for me…I am still winning, and you are scared, and you should be……” an “awareness-raising” depiction of autistic children as monsters, (with no mention of the adult self-advocates they might become). Another organization, the Foundation Fighting Blindness, posted a video last year that was titled, “What would you do if you couldn’t see your child?” The silent film featured images of children playing at the park, which became progressively blurrier to simulate loss of peripheral vision. While this film might have done a decent job of simulating peripheral vision loss, it failed to capture the ways in which blind parents interact with their kids outdoors, contributing to dangerous stereotypes that result in too many children being taken from their disabled parents.

Both of these attempts at disability awareness treated the disability as a one-dimensional enemy, completely ignoring the multidimensional lives of people affected. Fortunately, in response to mass protests, both videos were taken down by their creators (although the autism video is still in the Youtube archives). But it is clear that not all awareness is good awareness. We don’t want our disabilities regarded as enemies, nor do we just want people to know we exist. What we seek in an awareness-raising event is a real, tangible shift of public attitudes. We want people to come away from awareness events with a willingness to become our allies, an openness to consider us as equals, and a zeal to support changes that remove barriers keeping us from equal participation.
So, how do we construct awareness campaigns that effect real positive changes?

Early in my psychology studies, I learned about the “ABCs” of attitudes. Attitudes consist of affect (a fancy word for feelings), behavior, and cognition (a fancy word for thoughts or knowledge.). So, here are some ideas for the ABCs of an effective attitude change campaign. I welcome additional feedback about what has worked well in the comments.

Affect
Feelings are powerful motivators. Disability awareness messages often play on feelings, but too much of the time, they rely on scaring learners or making them feel sorry for people with particular disabilities. A good awareness campaign need not rely on fear or pity. Instead, invite people with disabilities to tell their stories and share themselves with the group. We tend to be more inclusive toward people we feel are similar to us, or when we identify emotionally with their experiences. So, let disabled guest speakers provide a window into their lives, their hobbies and interests, and their dreams. Share autobiographical accounts written by disabled people, or on social media, share blogs such as Autistic Hoya, Where’s Your Dog, or Claiming Crip.
Sometimes, good awareness means making people feel a little uncomfortable with the status quo. Encourage learners to critically examine their own knee-jerk reactions to disability and think about how they can modify their prejudices. Share accounts of discrimination and the prevalence of abuse, poverty, and other socially constructed injustices disproportionately affecting people with disabilities. Make learners a little angry about problems they have the power to solve collectively.

Behavior
The best awareness campaign does no real good unless it drives people to action. Once you’ve gotten learners emotionally invested in the problem, suggest concrete actions they can take to support people with disabilities. Examples of actions include:

Donating funds to a self-advocacy organization of disabled people;
Signing up for legislative alerts, and contacting legislators to urge action on disability rights laws;
Attending town hall meetings to advocate for improved public transportation in their town;
Identifying access barriers on their college campus or at local businesses, and reporting them to authorities;
Starting or joining a committee to promote inclusion at their place of worship;
If they are in a hiring position, making job applications accessible and advertising job openings in disability forums;
Making their photos and videos accessible on social media;
Consciously working to improve their one-on-one interactions with disabled people, ensuring they treat the person with dignity, as an ordinary other, and as an expert on their own needs. Learn more here

Cognition
Accurate information is an important part of awareness. Teaching about tools like the white cane can be very beneficial, especially when it opens up further dialogue. But any information presented must be accurate. I am continually shocked to see how many disability awareness activities happen without the leadership of disabled people. If you can’t find a disabled person or two to lead your event, at least find someone to fact-check your written materials or comment on your videos. Much better to get some critical feedback on a video before it’s released, than to release it and then deal with a ton of unexpected backlash from disability advocates. One place to find disabled individuals is on the Disability Wisdom Discussion Group
Accurate information might include education on the ways in which disabled people perform activities. It’s also OK to include information, from disabled people, on the challenges of disability. We know that having a disability isn’t all sunshine and rainbows, and presenting a balanced account is essential. Along with this, it’s important to respect the boundaries of our expert teachers with disabilities. Although many of us are willing to teach at a formal event, we may not be able or willing to teach when we’re busy shopping, for example, or we may wish not to talk about deeply emotional aspects of disability with people we don’t know well. A good awareness campaign may involve multiple expert teachers with different disability experiences, who are willing to participate in different ways. And, when you can, encourage ongoing contact between teachers and learners. After all, the need for good awareness doesn’t go away when a disability awareness month is over.

disability etiquette, Solidarity2

Disability Wisdom Principles

Last week, I talked about the background behind the idea of “disability wisdom.” “Wisdom” is the concept of building trust across group lines by assuring the other that we are unprejudiced and see them as full and equal human beings.

So, how do we put this into practice in the context of disability? How do we assure another person, with a different set of physical or mental abilities, that we see them as a full and equal human being?

When I started preparing disability trainings, I came up with three broad principles that seem to embody disability wisdom. These principles are general, but they also help organize a number of accessibility and etiquette considerations into an overall framework. These are general principles to keep in mind when we meet someone with any kind of difference:

Treat the person with the dignity and respect afforded to all people.

This principle may seem so obvious as to not need stating. But, for those of us with disabilities, it is often known best in its violation. For example, we often encounter strangers who try to speak to others on our behalf, such as asking a friend what we want to order at a restaurant. Such behavior denies us our voice, a basic tenet of our humanity. The dignity and respect principle also gets violated when someone touches our bodies or mobility aids without our consent. As a child, I quickly learned to recognize when someone spoke to me in a “baby” voice, particularly when they used that tone with me but not with my nondisabled peers. All of these actions, though usually unintentional, can break down trust and mutual respect between two people.

One of the simplest ways to afford someone dignity and respect is to “presume their competence”, a concept often articulated in the autistic community. That is, we can be wise by assuming that a new acquaintance has the ability to participate in ordinary interactions and activities, and to express autonomy. Signal this by speaking directly to the person in an age-appropriate way. Some people with disabilities may need supports or accommodations to participate in conversations or activities, but if you presume their competence, they will have the chance to make their needs known (see principle 3, below). If we start out believing that the people we meet are competent agents, we will be building the foundation of a mutually trusting relationship.

Affording dignity and respect also means supporting people’s privacy needs. Always getting permission before touching is one essential way to do this. Addressing universal design concerns also protects privacy. For example, wheelchair-accessible restrooms and digital versions of medical paperwork both allow people with particular disabilities to access systems in a way that affords them the same privacy as anyone else.

Treat the person as an ordinary other.

Goffman described the wise as those who perceive a person with a difference as “an ordinary other.” For people with visible disabilities, this treatment may be the exception rather than the rule. Too often, we are either seen as extraordinary heroes or as helpless victims, not ordinary equals.

One way to signal a perception of ordinariness is through language. Sometimes people worry about using words or phrases that are ability-centric in some way. English contains a number of common phrases such as “see you later” or “let’s go for a walk” which contain verbs tied to ability. Such phrases aren’t literal, however. Some people try to dance around these phrases in order not to offend. I vastly prefer it when people use these phrases in my company, because it signals that they are comfortable enough with me to use ordinary language. In a similar vein, I prefer it when people use direct language to address my disability, such as saying “blind” instead of using an idiom like “visually challenged” or “differently abled.”

Ordinary treatment also means following the same conversational norms with a disabled person as you would with a nondisabled person in the same setting. So, if you would normally offer a simple “hello” and a smile to a stranger on the street, do the same if the stranger has a disability; no more, and no less. Again, interactions involving disability sometimes veer to the extremes, with strangers either completely avoiding us, or else launching into a deep conversation and sharing their life stories. We just want to be treated in an ordinary way.

Treat the person as an expert on their own needs.

Most of the time, people with disabilities can participate in the same ways as people without disabilities. However, there may be occasions when an accommodation is needed. When these cases arise, it is important for the person with the disability to direct the process as much as possible. Two individuals, even with the same medical condition, may have very different needs and preferences. The same individual may have different needs in different settings. Instead of guessing what the needs might be, just ask us, and we will tell you. Equally important is to respect the answer. A declined offer of assistance isn’t usually a personal rebuff; rather, it may simply mean that the assistance you were hoping to give isn’t helpful for that person at that time.

Sometimes people wonder when it is appropriate to mention a disability in conversation. I have struggled with this issue myself, and to get some perspective, I posed this question on theDisability Wisdom Discussion Group Most people agreedthat it is fine to offer an accommodation or to ask about needs (e.g., “Do you prefer braille or large print material?” or “do you use captioning or an ASL interpreter?” Asking more general questions, such as “How does your assistive technology work?” or “how did you become disabled?” depends on the nature of the relationship you have with the person. While many of us don’t mind teaching about our disabilities, we may not always be in the mood for small talk, or have the time to answer questions. And, for some people, their disability resulted from a traumatic experience that they may not wish to discuss with new acquaintances. So, consider the intimacy level of the questions you ask in the context of the relationship you have with that person. At the least, you may want to open a new conversation with another topic before moving into disability-related discussion.

The three principles I’ve discussed are general enough to apply to a broad range of situations and relationships. I hope they serve as a good starting point when you think about inclusion, both on the individual level and the organizational level. Email meif you want to discuss specific applications of the Disability Wisdom principles in your work.