What Should We Call Ourselves?

Photo of a pile of Scrabble tiles, some of which spell out "WORDS"
One way to fight stigma and discrimination based on disability is to reject the label "disabled," and instead use another term that sounds nicer, less negative or limiting ... something like, "special needs," " differently-abled," or most commonly, "person with a disability."

This last approach is known as "person first language," because it emphasizes that above all, we are people, who just "happen to have" a disability. Disability, in this view, is a secondary thing, an add-on characteristic that we can separate from ourselves and look at objectively, as a purely practical matter that has nothing to do with who we are as people. Disability is a "thing" that you "have." It's not an identity that defines you.

For some of us, this way of thinking and talking about disability in our lives works well. It's still probably the most common way that disability thought and language are promoted to the general public. It is the most widely-accepted, "politically correct" term.

In recent years, however a growing number of people in the disability community have gone another way, embracing disability as an important and valued part of their identities. Instead of turning away from stigmatized words and asking others to look away from impairments, these people take them on squarely, affirmatively, saying, "I'm disabled," and talking about "disabled people." Some choose this because it sounds simpler and less fussy, but many also prefer placing "disability" or "disabled" up front, for specific reasons.

For one thing, carefully insisting on "person with" a disability is not only awkward in speech and writing, but can seem a little condescending, as if we need constant reassurance that we are, in fact, people. It also fails to recognize that whether we like it or not, disability is a cultural and social identity, not just a practical matter. The idea here is that we can try to pretend that disability doesn't really matter, in hopes that people will think better of us, but disability does matter. It doesn't matter in a bad way, necessarily, but it matters. Others argue that avoiding or demoting the word "disability" though person-first language and euphemisms like "handi-capable" actually keeps alive the idea that disability is always a bad thing, something to be tolerated and managed, but fundamentally a negative. By accepting "disabled," we can work to change what the word means and the feelings it brings out in others.

Which terminology should you use then?

Your best bet is to pick the terminology that makes the most sense to you, but be open to adjusting to the preferences of other people when you meet them, especially if they have disabilities themselves. Whichever construction or wording you prefer, the worst thing you can do is criticize or lecture to another disabled person / person with a disability and tell them that the terminology they use is wrong.

Language evolves, and so do our own views of disability ... maybe especially our own disabilities. Instead of worrying about getting it exactly right, keep an open mind, eyes, and ears, and appreciate how changes in language reflect ongoing changes in thinking. Shifting expectations can be annoying sometimes, but they are also healthy signs of the disability community's growth and diversity.

Disability Day Of Mourning

Photo of a single yellow lit candle against a plain dark background
Note: This post deals with a painful and potentially upsetting topic.

This Wednesday, March 1, 2017 will be the sixth annual Disability Day of Mourning, when we remember people with disabilities killed by family members, and urge people to re-examine how these incidents are talked about and understood. The event's principle organizer, the Autistic Self Advocacy Network, (ASAN), explains:

"We hold the Day of Mourning vigils to draw attention to these injustices, to commemorate the lives of victims, and demand justice and equal protection under the law for all people with disabilities."

Specifically, what we continue to see is that when family members kill their disabled loved ones, the killers are portrayed as tragic, relatable, even sympathetic. Their crimes are recognized as illegal, but viewed as somehow "understandable," given the presumed hardships of "caring for" disabled children and adults. We also tend to learn a lot about the killers and their struggles, including hearing their direct testimonies. But we find out little about their victims, who are typically described in the most simplistic, often impersonal terms, and who of course have no voice.

The most immediate effect is often lighter sentences for these crimes, and sometimes even acquittal. More importantly, it reinforces outdated and damaging stereotypes about people with disabilities ... either that our lives are so full of misery that death is preferable, or that our needs are intense and trying enough to make otherwise ethical people resort to murder.

This is a difficult, painful, and potentially controversial thing to talk about, for obvious but also non-obvious reasons. Death is never a pleasant subject, even when it's natural or accidental. It's even worse when it is deliberate ... worse still when it is filicide, parents murdering their children. Add disability to the equation and there is almost unlimited potential for anguish, rage, misunderstanding, and deeply hurt feelings. It is vital, however that at least once a year, we confront and speak out about the darker extremes of ableism. At the very least, our fellow disabled people who aren't still with us deserve to be remembered.

Disability Day of Mourning events are held all over the United States and several other countries. The events usually center on public readings of victims' names. Virtual recognition events are also held online, on Facebook and Twitter. The Disability Day Of Mourning is organized and supported by:

Autistic Self Advocacy Network
Not Dead Yet
National Council on Independent Living
Disability Rights Education & Defense Fund
American Association of People with Disabilities

ASAN maintains an archive of people with disabilities killed by family members as far back as 1980. You can view this list here:

Disability Day Of Mourning Archive

Disability and Twitter

Twitter logo, white bird on a light blue square
Twitter is much more than just the President's favorite communication tool. It's a unique type of social media that focuses above all on words. It's also an especially rich environment for communication and community among people with disabilities. But what, exactly, makes Twitter different from other social media, and where do I start?

5 Unique Aspects of Twitter
1. Each post is limited to 140 characters. Not 140 words, 140 characters. That includes punctuation and spaces. So, you have to be brief, or at least chop your longer statements into multiple parts.
2. Once you know what you're looking at, Twitter posts are easy read and respond to. As noted above, "tweets" are short, and it's not too hard to figure out how conversations and longer dialogs work.
3. Twitter is a great way to share links to any article or website that interests you. You can paste any website address into a tweet, and add a comment about it. On many internet browsers, you can even tweet directly from an article without even logging into Twitter separately.
4. Discussions on Twitter can cover a lot of ground, but they're easy to manage. Twitter discussions are more public and indirect than emails or texts, but that makes the more accessible to anyone who is interested. So if the discussion is about a public issue ... like some aspect of disability policy or common disability experience, participation is both personal and beneficial to others.
5. #Hashtags are a unique way to link topics and promote ideas. It's a little hard to explain hashtags, but once you see how they work, it's pretty clear. When you add a particular word or phrase to a tweet, people can see that tweet, even if they don't follow you, by searching that hashtag. Hashtag words and phrases have the # symbol in front of them, and are shown in a different color, like a web link, so they're easy to spot and you can see everything with that hashtag by clicking on it wherever you find it.
5 Reasons for People with Disabilities to Use Twitter
1. It's easy to connect with disability issues nationally and world-wide by following a few key people and organizations. (See the list below).
2. The 140 character limit will exercise your writing & communication skills. It forces you to organize your thoughts and be brief, which is a real asset in academic and business writing.
3. People with disabilities have popularized some extremely potent and expressive hashtags you'll want to read and contribute to. (See the list below). You can also start your own!
4. Organized, scheduled Twitter Chats allow huge numbers of people to join in more directed, purposeful conversations and have their contributions heard and recognized. A scheduled chat means a person or organization announces ahead of time when a discussion will take place. They will probably tell you the #hashtag phrase that will tie the conversation together, and they may publish a list of questions that they will ask during the chat to prompt discussion. All you have to do is log into Twitter at the appointed day and time, and search the #hashtag to see what everyone is saying and add your own comments if you want.
5. Although Twitter is not completely "barrier-free," it does enable people with disabilities to say and do a lot with minimal physical effort. As already pointed out, you don't need to type long paragraphs and pages in Twitter. In fact, you can't! Just a little typing, or dictating, and clicking is all you need. Plus, you can meet and conference with people all over the world without the cost or exhaustion of travel. That's quite an asset for people with disabilities.
5 People To Follow
(Descriptions are from their Twitter profiles)
"Unrepentant night owl. Obscene consumer of tv, food & news. Founder of @DisVisibility Project. Twitter is my dojo."
"#DisabilityTooWhite & #WOCwD Creator • Founder of @RampYourVoice! • #Disability_Rights #Consultant & #Advocate • Macro #LMSW • Writer • #Disabled Womanist"
"TheCripCrusader * film director * dad * trans quip (bi/queer crip) * Polish American Ławniczak * gamer * intersectional feminist * dis/LGBTQ in media #FilmDis"
"Disability rights, public policy and Judaism. Directs @mysupportworks and past President of @autselfadvocacy. I spent five years on @NatCounDis. Proud Zionist."
"Disability rights journalist. Medieval history professor. TV/movie critic. Irish rock musician. Fighting the #CultOfCompliance. I also do dishes."
5 Hashtags To Explore
#CripTheVote ... Ongoing discusison of disability and politics.

#DisabledAndCute ... Sharing photos of ourselves as proud disabled people.

#FilmDis ... Weekly discussions about disability on film, TV, and popular culture.

#SayTheWord ... Speaking out against using euphemisms for disability.

#AmericaWithoutADA ... Sharing ways American would be different without the Americans with Disabilities Act.

Disability On The Internet

Picture of a gray computer keyboard with one key blue with a white wheelchair symbol
Are you looking for internet content about disability that's more than dry, repetitive information, weepy inspirational stories, or bogus miracle cures? Believe it or not, there really is a rich, varied, and worthwhile Disability Culture out there. You just have to start at the right places and keep an open, curious mind.

Here are a few places to begin:

Exploring Websites

The core of the internet is still the basic website with combinations of printed word and graphic content. In the disability sphere, there are the usual informational sites, but also some that are more like magazines or personal diaries. Here are three places you should visit on the regular ...

A website and accompanying Facebook page that fosters lots of lively discussion about disability issues and culture. Founder Alice Wong specializes in profiles and interviews with interesting people with disabilities.

As you might guess from the title, Smart Ass Cripple is funny. But even the weirdest, most hilarious pieces by blogger Mike Ervin have a serious point that most people with disabilities can relate to. Expect a little profanity, and a lot of wisdom.

This is a great website if your main interest is in education and kids with disabilities. It's not quite as active as some other sites, but there's a huge back catalog of terrific articles on making schools accessible and special education more integrated and inclusive.

Listening to Podcasts

Podcasts are basically free radio shows for your computer, iPod, or iPhone, and often produced by true amateurs ... ordinary people sitting at their kitchen tables with a laptop, a microphone, and basic sound editing software. And there are several disability-themed podcasts you can listen to that are entirely produced by people with disabilities. Here are three ...

Emily Ladau and Kyle Khachadurian are good friends. They are smart, articulate, funny, and curious. And they each have a different disability. In each program, they take on ... and sometimes debate ... some kind of disability-related topic, like: accessibility (or the lack of it), disability language, and reacting to weird things people think and say about disability. The Accessible Stall is like listening in on a conversation between friends. It's interesting and delightful.

This program focuses on a very large but less understood segment of the disability community ... people with chronic illnesses and "invisible" disabilities. The hosts explore the gray area between being sick and being disabled, and how chronically ill people can carve out the kind of identity, pride, and civil rights recognition that other people with disabilities are doing more and more.

Disability With Drew is a new podcast that started last December. Host Andrew Gurza takes on some of the hot topics in disability activism and culture, such as: disability in politics, asking for help, and even "accessible fruit." Andrew has also already included several guests on his podcast. Listen to all the episodes to date, and make sure to come back regularly for more. 

Watching YouTube

YouTube is the leading tool for amateur video creation and sharing. It's also one of the richest sources of content produced by people with disabilities. The three here are just a small sample of the best out there ...

Robyn is a physically disabled athlete from the United Kingdom. She's also fun to watch and listen to, and she's got a lot to say about the day to day experience of disability, as well as commentaries on disability issues, popular culture, fashion, and sexuality. She produces several videos each month.

Michele Kaplan is a disabled YouTuber from New York City, with a deep interest in disability activism. Her videos deal with disability discrimination (aka "ableism"), myths about disabled people, and specifics about her own disability life day to day. All that might sound heavy, and it's definitely all important, but she's got a great personality and a good sense of humor, so her videos are never, ever dull.

Shannon's channel is a little different, because in addition to being a wheelchair user, she is also a working actress and comedian. So, her videos are usually more like sketches or pranks, and she often ... though not always ... works her disability into her act. Shannon is hilarious. She's obviously having fun, and you will want to be her.