Disability Etiquette in 3 Questions

Because we can never have enough guides to Disability Etiquette ...

I’ve been wanting to write a post about "disability etiquette" for quite awhile. Mainly, I want to try to come up with a simple set of guidelines that covers the essentials of what we consider “disability etiquette.” First, I think we have to be clear about what “disability etiquette” is for.

Is it meant to make social interactions less annoying and humiliating for disabled people, so our everyday lives suck a little less? Or, is it designed to make non-disabled people feel more confident interacting with disabled people, so they will interact with us instead of shying away?

Obviously, it’s a little of both, and I don’t think the two goals necessarily conflict. With both in mind, let’s take a shot at a three-point guide, structured by three very basic questions I think non-disabled have about us, and that we have about how we actually want social interactions to go:

Question 1:

Is it okay to ask a disabled person about their disability?

Answer:

It depends on the situation and how well you know the disabled person. If you’re a stranger or an occasional acquaintance, it’s hard to justify asking a disabled person about the specifics of his or her disability. Even if you know them pretty well, if you’re talking about work, or your last vacation, then it’s probably awkward and inappropriate to suddenly say, “You know, I’ve always wondered, what is your disability actually called?” On the other hand, if you are a wheelchair user in the emergency room because you’re violently ill, it’s probably okay for the nurse to ask for some details, even if he or she is a complete stranger.

If you’re not sure whether you know someone well enough to ask, think of an analogy. In a similar situation and level of acquaintance, would you ask whether someone is married or has kids? Would you dig further and ask if they are divorced or widowed? The better you already know and trust someone … and the better they know and trust you … the more it’s potentially okay to ask personal questions like that, including questions about a person’s disability.

Above all, think about why you feel the urge to ask. Do you have a truly practical need to know? Are you asking because you want to know them better as a person? Or, is it just insatiable curiosity, like an itch you’re just dying to scratch? If your motivation is more like the latter, it’s a good sign you should probably leave it alone.

What’s it all about? Appropriateness.

Question 2:

Is it okay to ask if a disabled person needs some help?

Answer:

Asking is the key. It’s almost always nice to ask. Problems arise when people dive in to help without asking, or when they ask, but then don’t listen, or overrule the answer.

If you ask a disabled person if they need help getting into or out of a building, and the answer is, “Yes!”, ask how you can help, and do what you can realistically do to help, according to the disabled person’s instructions. If the answer is, “No thank you,” or even “NO! GO AWAY!”, respect the answer, and don’t take it personally. That's right. Don't. Take. It. Personally. That can be hard to do if you’ve just been snapped at. But, if your original motivation was really to help, then it shouldn’t matter if the answer was polite, rude, or through gritted teeth. If you find yourself feeling personally offended, ask yourself whether your real priority was making the other person’s day a little easier, or was your actual goal to feel a little better about yourself. There’s nothing wrong with boosting your ego a bit by helping others, but things start to get out of balance when that’s why you offer people help.

Of course, if the disabled person takes you up on your offer, first ask how you can help and then follow the disabled person’s instructions. Don’t take “Yes, thanks” as your cue to take charge of the situation. That is exactly the sort of thing that causes many of us to resist help, especially from strangers, even when we probably really do need it. Also, following instructions is critical, even if you're sure you know what you're doing. The disabled person usually knows much better than you do how you can help them, and may also be more aware of the safest ways to do things for both of you.

What’s it all about? Control.

Question 3:

For real now, no messing around … which term should I use? Disabled Person? Person with a Disability? Physically Challenged? Special Needs?

Answer:

This one can frustrating, for sure. It seems like we are always changing our minds and can never agree even among ourselves which terms to use and encourage others to use. Given that reality, your best bet is to take a two step approach to terminology.

Start out using “disability” and “disabled” as your default terms. A lot of disabled people still don’t like “disabled” and “disability,” but it does seem to be the most universally understood and accepted term, applicable to all kinds of disabilities and across all cultures. Whether it makes complete sense to your way of thinking at the moment, it is the most widely accepted way of referring to physical or mental impairments.

If those words are accepted with no comment, you’re fine. If a disabled person objects though, and says they prefer other terms, then respect their preference, whatever it might be.

It’s worth noting that there is currently a debate going on inside the disability community between person-first language … where you say “person with a disability,” and identity first language ... where you say “disabled person” or just “disabled.” If you’re not disabled yourself, you really don’t need to worry about this. Just go with what the disabled person or people you are with seem to like better.

Above all, never lecture to a disabled person on why your preferred terms are correct, and the terms they prefer is wrong or misinformed. You might know something deeper and more significant about disability than a person who actually lives with disabilities everyday, but it's unlikely. In any case, telling a disabled person that they're doing disability wrong is just obnoxious. Don’t do it.

What’s it all about? Respect.

Is there more to “disability etiquette” than these three things … Appropriateness, Control, and Respect? I’m not sure there is.

Inspiration Without Inspiration Porn

First read this …

Young Woman's Treatment Of Disabled Vet At Walmart Goes Viral (Photos)

Charles Roberts, America News - November 11, 2015

… and marvel at the stunning insensitivity it took for this woman to congratulate herself for doing a good deed, after “stubbornly” overruling a disabled veteran who said several times he didn’t need or want her help, and forcibly helping him anyway. It takes a lot for a news item to stun and offend me personally, but this one had me swearing aloud to my iPhone.

Now read Dominick Evans’ terrific blog post about the story:

Inspiration Porn Is Out Of Control

Dominick Evans - December 16, 2015

Yes, it’s “Inspiration Porn” again. Why are we so bothered by people who are just trying to be kind? Why won’t we leave it alone?

Because it keeps happening, it’s genuinely disturbing, and people keep finding ways to make it even worse.

Still, I hate being a sourpuss. Just because I loathe sentimentality, doesn’t mean that all sentiment is wrong. Just because I don’t exist for your inspiration, doesn’t mean it’s wrong to feel inspired by whatever happens to inspire you. The alternative to Inspiration Porn isn’t gross negligence, like stepping over a disabled man choking to death in a McDonalds. There are decent, acceptable ways to be decent, kind, and helpful to disabled people.

Can you do a "good deed" for a disabled person without offending them?

Is it possible to do inspirational stories about disabled people without being smarmy and condescending?

Yes and yes!

First ask, "Can I help you?", and then respect the answer. And if the answer is "No thank you," or even just plain "NO!", don't take it personally. How each disabled person answers depends on many factors. I’m not often asked if I need help. When I am, I usually say, “No thank you, I’ve got it” because I’ve got it. Sometimes I say, “No thanks,” then pause a moment, survey my situation, and say, “Actually, yeah, that would be great, could you …?” and then I tell the person exactly how they can help. Sometimes, I say, “Yup!” right away, and hand them the whatever that I’m trying to carry while inching my way down some stairs. The point is, it’s fine to ask, I call the play, and the only really offensive thing is if you don’t listen to my answer.

What about pictorial depictions of bravery, kindness, perseverance, inspiration, like Facebook memes or YouTube videos?

Never snap a photo, never shoot a video about a disabled person without the disabled person's consent. It doesn’t matter that you admire the thing you are depicting. It doesn’t matter that you do it to make people happy or uplift them, or teach them a lesson about gratitude. What matters is the result, and if the disabled person isn't on board with the situation or being used in your little morality play, any good you think you’re doing will be undone.

Above all, make sure the disabled person has a voice in the story or scenario or whatever it is you’re focused on. If you write about an actual, named, identifiable disabled person, ask the disabled person to comment and include what they say. You’ll discover pretty quickly whether they think the situation is amazing and remarkable, or pretty standard and nothing to crow about. And that should be your guide on how to think about it, too. Follow the disability rights movement motto: "Nothing about us without us."

If you focus on a disabled person overcoming adversity, ask questions about that adversity and why it is there. Stories of individual courage and character are uplifting, but disability discrimination and hardships don't happen in a vacuum. The problems disabled people face usually come from or are made worse by the bad choices and neglect of actual people and institutions that should be challenged. Battling institutional ableism doesn’t translate so easily to cute Facebook posts that make people go, “Awww!” but that’s part of the point. And anyway, fighting discrimination IS inspiring!

Finally, remember that not every disabled person craves "going viral." Most disabled people just want to get on with life. Believe it or not, many of us strongly prefer anonymity! Most importantly, we all want to be treated as people, with three full dimensions, unique points of view, and complex feelings, not cardboard cutouts employed to symbolize abstract values, or tools to make you feel swell and become Internet-famous.

But what if I can’t follow all these conditions and still tell my story?

Simple … just don’t tell the story! Sometimes, a little restraint is the best, most uplifting gift of all.

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Mainstream Article on Disability Etiquette

A powerful reddit thread reveals what it’s like to be disabled

Ana Swanson, Washington Post Wonkblog - April 24, 2015

You can’t swing a deceased feline in the Disability Blogosphere without hitting lists of advice from disabled people, offered to non-disabled people, on how we prefer to be treated. I think it’s a great exercise for ourselves, and I’ve seen some nice feedback from non-disabled readers, so I know some of them are reading and getting something out of it, too.

This Wonkblog compilation of a Reddit thread is unusually good reading of this kind, and best of all, it’s in a mainstream publication … two of them actually if you count the complete and original back and forth on Reddit. I am especially pleased because I agree with everything on the list. Most of the commenters are saying what disability activists and bloggers say all the time, but I love the irreverence and novelty of how some of these folks explain things. For one thing, they are almost completely free of disability jargon.

I do wonder … Reddit being Reddit … if Ana Swanson intentionally left out angry ableist responses. It's understandable if she did, since she set out to compile good advice, not online hate. However, if there were any ugly comments in the thread, it would be educational to see a sample of them. There is a reference to the common phenomenon of the hyper vigilant, self-appointed guardian of “handicapped parking,” but that is presented mostly as a misunderstanding. The kind of thing I see a lot is people drawing distinctions between “good” disabilities and “bad” ones, a widespread skepticism and intolerance for any kind of “emotional disabilities,” insistence that disabled people who speak out in any way are “just craving attention,” and of course the fiscal conservatives and Libertarians who resent any penny spent on assisting us that comes out of their paychecks.

People who have positive feelings about disabled people and disability issues sometimes can’t imagine that aggressively hateful ableism really exists. It’s so foreign to their thinking that there is a tendency outside the disability community to discount our tales of horrifying ableism as overreaction or misunderstanding. While one must occasionally correct for hyperbole language, the incidents disabled people describe when they let their hair down and really share are quite real. And there are some true haters out there who have special, very intense little resentments directly aimed at disabled people.

I would love to see a compilation like this that not only catalogs online ableism, but categorizes it as well into its most popular themes.

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Newbie FAQs: Introduction

There’s this line of thought within Disability Culture, which says that one of the oppressions we experience is the expectation that it's always our responsibility to "educate" non disabled people ... that our first response to offensive, annoying comments or actual discrimination should always have the tone of a patient, caring teacher. How can a non-disabled person with no personal connection to disability know the right thing to do if we don’t tell them?

There are good reasons why so many of us see this as another form of oppression.

First of all, the response, “Teach me! I need to learn!” usually comes from the source of some painful encounter with ableism. Second, more often than not, the person saying this should actually know better. For example, any business owner who claims ignorance of the ADA, which will be 25 years old this July, is either grossly lazy or lying. Also, it really shouldn't take much in the way of social science or diversity training to realize customers with disabilities should be spoken to directly, not through the non-disabled person who is with them. Third ... and in all honesty this is probably the most common reason ... we just get tired of explaining the same things to people over and over again, year after year, decade after decade.

We are tired of constantly having to answer those same “Frequently Asked Questions”.

On the other hand, there is some merit in the old saying, “If you want something done right, better to do it yourself.” As sick as we are of being everyone’s unpaid disability sensitivity trainer, do we really trust others to do it for us?

As for the questions themselves, are they really things everyone should just know, instinctively? Or, are we expecting too much to come naturally to people, at least in regard to disability “awareness”?

If only there was some sort of network or communication tool we could use to answer these questions once and people could just read them. Wait a minute …

Let’s start with the questions. Here are some of the questions I hear most often from non-disabled people … and a few with disabilities, too. (Note: I will try to phrase these questions as I have heard them, sometimes using terminology I wouldn’t normally use myself).

Why do you call yourself “disabled"? Isn’t that a negative term?

Why are so many businesses and buildings still not handicap accessible? Isn’t that against the law?

What's wrong with being “inspirational”?

What’s wrong with special schools, group homes, and day care programs for the disabled?

Isn’t it unrealistic to close sheltered workshops? Most of those people will never be able to get a real job. In a workshop they’re at least busy, socializing, and making a bit of money. 

Isn’t it okay, if someone’s really severely disabled, for them to decide they don’t want to live anymore? Isn’t it all about dignity and choice?

How can it be better to place special needs kids in regular classrooms, where there’s no way they can keep up and the teachers have a hard enough time teaching all the normal kids? 

Isn’t there a lot of abuse of the term “disabled” these days?  I mean, parents getting their kids labeled so they can collect SSI, and unemployed adults getting their doctors to declare them disabled so they can collect Disability. This is a big problem for real disabled people, right?

Just between you and me, it’s different with mentally challenged people, isn’t it? I mean, they can’t be independent like you, can they? 

I broke my leg skiing last year. I had a cast for three months and had to go around on crutches. So I know what it’s like to be disabled.

If we really want city councilors to understand accessibility problems, why don't we make them spend a day in a wheelchair? That would teach them!

Over the next several weeks, I’ll try to answer each of these FAQs. I would love to see other, similar questions that you hear a lot from people who are “disability newbies”. I invite you to post them in the comments below!

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It's Just Creepy

Disabled Toronto comedian catches strangers' shocking comments on tape

Josh Dehaas, CTV Toronto - November 8, 2014

It's an interesting comparison I kind of wish I'd thought of ... catcalling or "street harassment" of women, and the staring, gaping, and weird comments disabled people get out in public.

I suspect that both stem from roughly the same thing ... the unregulated impulse to look at a person who "stands out” somehow and blurt out a variation on, "Wow, look at that!" I chose those words deliberately. I think that when this happens, to women and to disabled people, we are not hes or shes, we are THATS. We are pieces of scenery, curiosities. That's what makes it galling.

One key difference is that in catcalling, the man usually wants the woman to hear, while most people who are rude to disabled people in public spaces try to hide it. No matter. It feels shitty either way.

To be clear, it doesn't matter what people say. The problem is the presumption by total strangers that it's okay engage with us in a way they wouldn't with other strangers. It's much the same with men catcalling women. "Smile, honey!" is friendly on paper. In person, tossed at you by a total stranger, it's creepy at best. So is, "Hey, little man!" from someone you've never met or even seen before.

(Via Girl With The Cane’s Facebook Page)

4 More Tips For Parents

TALKING TO KIDS ABOUT DISABILITY (AND VOLDEMORT)

Mary Evelyn, What Do You Do Dear? - September 5, 2014

This is a terrific article with great advice for parents of disabled kids, and kids with disabilities themselves. Slack-jawed stares and uncomfortable questions are often the first and most frequent encounter disabled people have with the social stigma of disability. So, I would like to add four more suggestions for parents on how to help their children handle disability-related pointing, staring, and asking.

1. Age makes a difference ... the age of your child, and of the person doing the pointing, staring, or asking. If you child is older than the person asking the questions … if your child is a teen and the other kid is 5 years old … it's a good opportunity to help your disabled child take on age-appropriate responsibilities. Teach them that as the older child, they should be a little kinder and more forgiving to the younger child than they might want to be. Help them recognize situations where they can help make someone more comfortable with and respectful about disability.

2. Help your child recognize situations where frank disability questions are okay. For example: doctor’s appointments, certain educational settings (though not necessarily all of them), and dealing with police, firefighters, and EMTs.

3. Empower your child to establish appropriate personal boundaries. Teach them effective, constructive ways to respond when people cross those boundaries. Let your disabled child know they have a right to be treated respectfully, and that they don't have to put up with everything from everybody, even from adults, just because they have disabilities and need help and supports that most other people don’t. It’s good to be appropriately grateful. It’s dangerous to feel beholden.

4. Help your disabled child develop effective and efficient ways to explain their disabilities to others. Having a brief, straightforward answer to the most “frequently asked questions” can be practically helpful, and give one added confidence.

On Disability Etiquette ...

Many Britons feel uncomfortable around disabled people: Let’s End the Awkward

Ross McGuinness, Metro - May 8, 2014

Are you a jerk to people with disabilities without even knowing it?

Dylan Matthews, Vox.com - May 8, 2014

First I read the Metro article about the UK-based publicity campaign aimed at improving peoples’ disability etiquette. It seems like a very good, professional, high-quality campaign with good advice that will hold peoples’ attention.

Then I was overjoyed to read the article on the same subject, in the new “Understand The News” website Vox.com. I have been wondering when Vox would get around to dealing with a disability related issue or trend, and Dylan Matthews does a great job of explaining and expanding a bit on the theme of disability etiquette. The title, alone, is perfect and presents the notion of Well-Meaning Ableism beautifully.

I look forward with unreasonable excitement for Vox to tackle a major disability issue with one of their “card stacks” … collections of short “explainers” that break down complex issues into easily understood segments, each one titled with a question phrased as an average reader might ask. I highly recommend exploring Vox.com and some of these card stacks, and see if you don’t agree that the format could be perfect to explain all manner of disability topics.

Best Disability Etiquette Advice

Thoughts on noticing disability experiences

Real Social Skills - March 18, 2014

Via The Lame Dame.

The title of this linked Tumblr piece really should be something like, “A More Useful Disability Etiquette”. The problem is that it came in the middle of a conversation about the social pressure on disabled people to keep things that bother us to ourselves … to “protect” non-disabled people we meet socially from having to know about the physical barriers and ableism we face every day. Someone had then said that he or she didn’t want to be shielded, but wanted to make real, respectful connections with disabled people, and how should they do that?

The list of suggestions from the Real Social Skills blogger is the answer to that question.

There is a complete disability etiquette seminar in there, and much better than the usual boilerplate, obvious stuff that usually passes for disability etiquette / awareness content. I wonder if anyone has ever done a comprehensive study of “disability awareness” content. I have felt for a long time that disability awareness guides, curricula, and exercises need to be overhauled, but have never figured out how or exactly why. This list seems to me like a great start, in part because it addresses what people really want to know … what really makes them anxious: How do I talk to a disabled person without putting my foot in my mouth?

I would only add one item the list:

Just as a surprising change of pace, if you want to connect with a disabled person, instead of asking about their disability, which can often be intrusive, ask them whether they experience barriers or discrimination. For most disabled people, the subject of our actual disability and how we become disabled is boring old news. What continues to engage us every day are the barriers and discrimination we face, and talking about them is kind of taboo on us, as noted above, because we don’t want to be seen as whiners. Inviting us to vent can be most welcomed, and at the same time will give you a glimpse into what life with a disability is like.

Be prepared to listen though, not argue. Don’t invite the conversation only so you can engage in some kind of “devils advocate” debate, or to expound your theory that accessibility is a waste of money, or that there are too many handicapped parking spaces. “Reasoned debate” is incredibly valuable on these topics, but there is a difference between discussions designed to hash out truths, and sharing to increase understanding and intimacy.

Addendum:

I just noticed that Real Social Skills posted my original Tumblr reply, which incorporates some of what I have said here. I suggest just going to the Real Social Skills blog and browsing all of the responses on this thread. They contain a lot more good suggestions from others.

Doors

From the “Hypermobile” Tumblr blog.

The first time I wrote anything about my disability for public consumption, I wrote about the difficulties I had with heavy, hard-to-open doors in my high school. It was supposed to be funny, and I guess it was, at least to other highschoolers, because classmates would still occasionally mention the article two or three years later. I can’t honestly remember whether the doors got any easier, or if peoples’ behavior changed for the better, but I think maybe a few people got a taste of what life with disabilities was like. I think they learned that what I found to be problematic was something they’d never thought of.

Shopping While Disabled

Disabled shoppers deterred by difficult high street experience

Rebecca Smiters, The Guardian - January 14, 2014

There’s nothing surprising in this report about the barriers disabled people in the UK encounter trying to shop in the “high streets” of their towns. It’s the same here in the United States. But I was struck by the clarity of the article, and its focus. In a strange way, not having to mention the Americans with Disabilities Act helps keep attention on the actual, practical problems that deter and exclude people, rather than just debating whether this or that practice violates the law. I still think well-crafted anti-discrimination laws and accessibility codes are important, but sometimes they distract us from simply noting exactly how customer service sucks for disabled people.