Just Say the Word, Disability!

No, “disability” is not a bad word.

No, having a disability is not shameful.

No, disability does not mean being “less than”.

No, disability does NOT mean a complete inability to do things. It only means, needing to do things differently from everyone else.

No, it does not mean that your life loses value. Disabled lives are LIVES WORTH LIVING.

Claiming the disability label for yourself or for your children and other loved ones is NOT a form of “giving up”. It doesn’t mean that you stop working toward greater autonomy, improved abilities, integration into society, or a more fulfilled life. It just means, acknowledging that you may need to do things differently. Sometimes accepting a disability can be an important step toward achieving your life goals. You can’t imagine away limitations, but you can imagine how to work around them.

Claiming the disability label can be an act of pride. Many disabled warriors have fought for everything from the right to ride public transportation, to attend school, to have the same access to information and communication as everyone else, and more. Even if you’re not disabled, then you have still benefited from our advocacy. Every curb cut you’ve ever used for your baby stroller, every line of captions that enables you to understand television in a noisy bar, and many more things are there because we fought for them.

If you’re worried about “appropriating” the term from people who need it? If you are worried that your difficulties are too “minor” to “count”? If you think the best way to show respect for disabled people is to disclaim the label? Please relax. Most of us want MORE people, not fewer, to feel entitled to identify with the word “disability”. Even people who experience different degrees of difficulty may still share a common need for accessible environments and respect for our value as human beings. You’re not taking anything away from us by claiming the identity. On the contrary: you are identifying common ground that lets us work together toward common goals.

If you still believe disability isn’t an accurate descriptor for you? Or if you need to think about it more first? You have a right to define your own identity. You do you.

But please, have the courtesy to disclaim the label in a way that doesn’t imply that being a person with talents, autonomy, and value as a human being is somehow a contradiction to being also a person with disabilities.

And, please, learn what the term means before explaining why it doesn’t fit. If you say you’re not disabled because there are so many things you can do, then you haven’t understood what it means. If you say you’re not disabled because you “only need to do things differently,” then you have just given the definition for what “disability” means. Wouldn’t it feel silly to learn that your explanation for disclaiming the label instead explains why you have a right to claim it after all?

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Open Letter to People Writing Articles About Successful People with Disabilities

Open letter to people writing articles about successful people with disabilities:

Yes, that’s right, [insert disability here] completely failed to stop this person from [insert ordinary accomplishment here].

Do you know why their disability did not stop them from doing well with the thing?

Here, let me help you. The reason why their disability didn’t stop them? Is because there’s no reason why it would! Because having this disability doesn’t have anything to do with the success that you have described!

The negative assumptions that other people make about disabled people? The prejudice and discrimination that people with disabilities have to deal with? The accessibility barriers in our environment? These things can slow us down. Sometimes these things can even stop us altogether. But nine times out of ten, articles about successful people with disabilities aren’t talking about these things when they say, “[disability] did not stop this person from [accomplishment]”!

You may think you are doing a good thing in sharing stories that help bust stereotypes about disability. You are helping show that people with disabilities can be successful!

Yes, this is good. But the way you frame this matters. When you say that the person accomplished X despite having disability Y, you help reinforce the concept that disability Y should normally be a barrier to achieving accomplishment X. These kinds of statements can actually reinforce negative assumptions about disability. This can imply that the person’s success is a rare exception that other disabled people might not achieve. And often that implication is incorrect.

If you really want to help break stereotypes, then please don’t do it like this. Instead, please help your readers understand that,

  • Yes, this person with a disability is successful!
  • Because lots of people with similar disabilities are also accomplishing great things!

Help employers and other gatekeepers understand that, very often, the only thing standing in the way of the next successful disabled person is the lack of opportunity. And they’re in a position to offer these opportunities.

Thanks.

Signed, Annoyed Reader with Multiple Disabilities Who Sometimes Gets Tired of Seeing the Same Tropes in News Stories About People with Disabilities

[Note: I originally posted this “open letter” at my Tumblr.]

[Disclaimers: Yes, I recognize that sometimes disabilities are the barrier. I do not intend to erase the experiences of people for whom disability is the primary challenge to meeting conventional definitions of “successful”. However, in a high ratio of media coverage, disability in and of itself is not as much of a barrier as media purveyors seem to assume. Also: Yes, I absolutely agree that people do not have to be employed to have value as people, or to be defined as “successful”. Hence, “and other gatekeepers”.]

No, Automatic CRAPtions are Not Captions!

CRAPtions = auto-generated captions that some hearing YouTubers use as an excuse for not providing actual, human-edited captioning.

In this video, Rikki Poynter explains why the aut0-generated craptions are, in most cases, pretty much useless for deaf people who want to watch videos, and provides examples of really bad craptions. (The first 44 seconds, and the last 50 or 60 seconds are about a VidCon she was preparing for at the time she produced this video. But the rest of the content in between is focused on “craptions”.)

Consider joining the #NoMoreCRaptions campaign being launched this September 25th by YouTuber and blogger Rikki Poynter. Read her guidance below on how you can help.

If you don’t do YouTube, then Rikki has said that she also will welcome people writing blog posts or Tumblr. If you don’t do that either, then consider using your other social media to bring the attention of your friends and your favorite YouTubers to this event.

If you are personally a YouTuber who isn’t sure how to caption your videos (or get it done by others), check out this resource: http://captionedwebtv.blogspot.com/p/producer-information.html

#NoMoreCRaptions!

Sick of checking out a YouTube video only to find that it uses the computer generated CRAPtions and not properly human-edited captions? Wish more YouTubers would properly human-edit their captions, or get someone else to do it for them, and not just trust that the automated YouTube CRaptions will turn out alright? Then join the #NoMoreCRaptions campaign being launched this September 25th by YouTuber and blogger Rikki Poynter. Read her guidance below on how you can help.

If you don’t do YouTube, then Rikki has said that she also will welcome people writing blog posts or Tumblr. If you don’t do that either, then consider using your other social media to bring the attention of your friends and your favorite YouTubers to this event.

If you are personally a YouTuber who isn’t sure how to caption your videos (or get it done by others), check out this resource: http://captionedwebtv.blogspot.com/p/producer-information.html

 

Meeting Myself in a Book for the First Time, Again

The first time that I met myself in a book, I was a little girl–young enough to relate to 6-year-old characters, and to view 12-year-old characters as being practically grown ups.

It went something like this, and here I’m going to quote an abridged passage from an earlier blog post I wrote on meeting myself the first time, entitled “Me, The Bobbsey Twins, and Switched at Birth“:

“For years it is missing and you don’t even notice. …. Not because you don’t miss it, not because you don’t yearn for it, but because you don’t realize that it’s possible to have a world in which it exists.  … And then, one day, it happens. … And you turn the page, and it happens. Your heart seems to skip a beat and then beats again, faster than before.  You freeze, staring at the page, watching as the whole world opens up all around you, richer and more tangible than ever you knew.  … [F]or the first time in my life, I’ve just met me in a book.  Because Flossie’s friend is a little deaf girl like me. Just like me.  Here is me.  At last.”

Except then, it went like this: after a series of puzzling “lip reading” errors not at all consistent with the type of lip reading errors likely to happen in real life, Flossie’s friend says that she is “all mixed up”.  And instead of recognizing that she must be frustrated and in need of some other communication strategy, Flossie and her mother simply laugh at her.  Again, quoting from the earlier blog post:

“Slowly and reluctantly,  after talking with my parents about the book, I started to understand.  No, the little girl’s deafness wasn’t there for me.  ….  No.  The point of this scene was … See how funny these communication difficulties are?  Here I am in a book.  For the very first time in my entire life.  And the only point of having me there … was so others could laugh at me, at a little girl like me having trouble understanding what Flossie’s mother said.”

So I had finally met me in a book.  And almost wished I hadn’t.  And I’m 46 now.  And that first time still hurts.

Yes, I did eventually meet other deaf, Deaf, and hard of hearing characters in books and TV programs and movies.  And, yes, it helps.  A lot.

But here’s the thing.  None of them is the first time, because by definition you can only have that once.  And then it’s over and you can never get it back and fix it or do it better.  You can never put “first time” and “again” together in a sentence.

Except.

Then one day, this happens.

(And, sorry, there’s going to be a bit of a spoiler for the book mentioned in the next paragraph.)

One day you’re reading a book.  To be exact, it’s To Stand in the Light by Kayla Bashe.  You’re 45 years old at the time this is happening and you still read voraciously, so there are probably thousands of books behind you now.  And you like this book.  It has girl characters, and non-binary characters, and characters with PTSD, and characters who are lesbian or bi.  And they have adventures and they do brave things.  And they’re also human and complex and not at all perfect, because who is?  Some of them are kind of messed up, in ways that make your heart ache and make you want to crawl into the book and tell them that it’s all right, they’re good just the way they are, and they deserve love, and they should have love, and they will have love, because they already have it if they’ll just look again.   And you like these people.

And there’s one of the main characters who is starting to feel a bit like you in certain ways.  Not exactly like you, but close enough that you can understand why the things she finds hard are hard (even if they’re not exactly the same as the things you find hard).  Close enough, that you can remember being her, before you knew why the hard things are so hard.

And you turn the page, and it happens. Your heart seems to skip a beat and then beats again, faster than before.  You freeze, staring at the page, watching as the whole world opens up all around you, richer and more tangible than ever you knew.  And you’re sitting there on the subway train, crying.  Because the character, Bean, has now been diagnosed with attention deficit disorder–just like you.

You see, it took 45 years, but it finally happened.  This was the first time I’ve met a character in a book who was a girl growing up with ADD, just like I once was a girl growing up with ADD.

I’ve now met myself in a book for the first time in my life … again.  And this time, it doesn’t hurt.  This time, the character was written partly for me.  Here is me.  And I’m okay.

Kayla Bashe–thank you for writing this book.  May you always keep on writing more!

Disabled Activists Demand Ratification of Disability Treaty #CRPD!

Feel the energy of these advocates asking the U.S. Senate to ratify the CRPD “Disability Treaty”! Six minutes with captions:

You can take action to support the CRPD at http://disabilitytreaty.org.  The Action Center there can guide you through phone calls to your Senators with phone numbers and a suggested script.  (Although phone calls are best, the Action Center can also help with emails.)

Want to learn more about the CRPD? Start with these basic handouts: http://bit.ly/CRPD1Pager and http://bit.ly/CRPDmyths.

Want to know what the CRPD says? Read the full text for yourself.  Or, if you prefer, you can just read a brief summary at http://bit.ly/CRPDoverview.

Finished calling the two Senators for your state?  Or, live in disenfranchised DC?  Consider calling a few more Senators!

Yes, each phone call is counted even if you have called on the same issue many times before.  Winning CRPD ratification is partly a game of numbers: we lost at our first attempt at U.S. ratification in December 2012 because people believing in conspiracy theories about the UN flooded Senators with more phone calls than CRPD supporters.  Please don’t let this happen again.  We need to boost the number of our calls to Senators in order to win.  One easy way to do this is to either call more Senators, including Senators from other states, or else call Senators multiple times, or both.

Consider more ways to take action at http://bit.ly/ActionCRPD.

Landslide Majority of Americans Support the “Disability Treaty”–So What are They Waiting for?

What Are They Waiting For?    •	Nearly two-thirds of all Americans support it. •	50 percent of Republicans support it, with only 32% opposed. •	61 percent of Independent voters support it.  •	83 percent of Democrats support it. •	(Source: http://bit.ly/DisabilityPoll2014)   Why Hasn’t the U.S. Senate  Ratified the Disability Treaty?  •	The Disability Treaty, called the Convention on the Rights of Persons with Disabilities (CRPD), is an important international agreement among countries to defend the civil rights of 1 billion people with disabilities around the world. •	More than 150 countries have ratified it—but not the United States.  U.S. Senators have been listening to fringe groups who use misinformation and lies to advance their anti-treaty agenda.   Take Action!  •	Please tell Senators that landslide majority of Americans like YOU support the CRPD.   The Action Center at http://disabilitytreaty.org will give you phone numbers for your Senators and a suggested script for talking with them. •	Learn the basics about the treaty at http://bit.ly/CRPD1Pager and http://bit.ly/CRPDmyths. •	Find more ideas for taking action at http://bit.ly/ActionCRPD!For people who cannot see the image, I provide the same text below:

What Are They Waiting For?

Text inside circle says "We Support CRPD", text around circle says www.disabilitytreaty.org also on rim of circle are icons for sign interpreter, wheelchair, audio loop, and blind person with cane

  • Nearly two-thirds of all Americans support it.
  • 50 percent of Republicans support it, with only 32% opposed.
  • 61 percent of Independent voters support it.
  • 83 percent of Democrats support it.
  • (Source: http://bit.ly/DisabilityPoll2014)

 Why Hasn’t the U.S. Senate Ratified the Disability Treaty?

  • The Disability Treaty, called the Convention on the Rights of Persons with Disabilities (CRPD), is an important international agreement among countries to defend the civil rights of 1 billion people with disabilities around the world.
  • More than 150 countries have ratified it—but not the United States. S. Senators have been listening to fringe groups who use misinformation and lies to advance their anti-treaty agenda.

Take Action!