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This post is about the best sites to learn ASL online. It is meant to serve as a resource to others who would like to learn ASL but may not have access to physical classes.

My interest in learning American  Sign Language (ASL) was a long time coming. Although I am myself deaf, I tried to “pass” as hearing and focused on lip reading to get by. This is exhausting, and with my profound hearing loss, I would like to be able to relax and communicate with others.

As we live in a very isolated area when we are in the United States, and on the road in Mexico when we are not, I need to learn ASL online. Here are some sites that I have found useful to learn ASL:

(note: the links are in the headings)

Lifeprint

Super awesome site. Free lessons, fingerspelling, dictionary, the whole shebang. Oh, and my favorite, Deaf Jokes page!!

Two Deaf men are signing to each other.
The first man asks, “What did your wife say when you got home late last night?
The second man replies, “She swore a blue streak”
And the first man asks, “What did you do then?”
And the second man replies, “I turned out the light.”

ASL Pro

This site kind of overwhelmed me with all the ads and stuff for sale. So far it seems like a lot of dictionaries, including “religious” ones (- if you are wanting to teach your child Bible signs, this is probably your stop).

Apps

There are a lot of fantastic apps for learning ASL online – here are some of the best:

  1. ASL Dictionary: comprehensive ASL dictionary with videos of more than 5,000 signs
  2. The ASL App: a hip app designed by Deaf ASL users to teach ASL (the one that Nyle is in!)
  3. Signing Savvy: learn ASL and join in conversations and more with the membership site
  4. SignSchool: vocabulary builder, dictionary
  5. YouTube: subscribe to Deaf YouTubers, search for classes. Download them through YouTube Red.
  6. Marlee Signs: learn ASL with Marlee Matlin
  7. ASL Translator: type in the English and get the ASL translation
  8. ASL Dictionary: over 5,000 signs, multiple ways to sign the same word and does not require internet

Described and Captioned Media Program

You are able to “check out” videos, DVD’s and books, a’la netflix.

They even give you a postage paid mailer to send them back. In addition to the DVD’s, they have streaming online videos and offer all kinds of things for ASL instruction, deaf culture and children – really, really cool site.

Check out the lessons available for ASL instruction hereSweeeeeet!

 Start ASL

This has a ton of online ASL classes here – both free and paid courses with homework and everything. I love that they have a section for homeschoolers, they have tutors and an online practice community too!

Babies and Sign Language

This is primarily a site for baby sign – which I am not looking for. But they are some cool links to places to learn other languages – Latvian sign, anyone?

Signing Savvy

It’s an app (see above) and also a site. It’s a brilliant video-based signing dictionary. Very easy to use and free.

Deaf Read

This is the Deaf blogging community. It’s awesome because there are a lot of vlogs – video blogs – a great way to interact with real people, virtually.

Signing Time

If you haven’t already tapped into this truly astonishing system of catchy music + signs, well, here’s your introduction now – it is the easiest possible way to teach babies and kids basic ASL, both online and with DVD’s.

They have a slightly more advanced system with sentences and grammar, etc, but it does not go much beyond basic functioning ASL (“what’s your name?” and so forth.

YouTube

YouTube has a lot of kick-ass d/Deaf vloggers now. Here’s a post on some of the best vloggers to check out.

This is a post about the best deaf apps in 2018. That is, the most useful, popular and widely-used apps by d/Deaf people. This post is US-focused, and covers only iPhone apps.

Best Communication Apps

  1. Glide:  for texting and talking.
  2. P3 Mobile: for texting, talking and relay services. Includes ASL and clear-speech relays.
  3. Google Voice: for transcribing messages (speech to text).
  4. Hamilton CapTel: for captions during the phone conversation
  5. Sorenson Buzzcards: d/Deaf create flashcards for communication with the hearing. Flashcards can be saved.
  6. FaceTime: visual calling

Best In-Person Communication Apps

  1. Speak4Me: text-to-speech
  2. Sorenson Buzzcards: create flashcards to communicate with non-ASL users
  3. Text to Speech!: text-to-speech
  4. iSpeech: text-to-speech
  5. Subtitles Viewer LIVE!: live speech-to-captions (caption real-time, live conversations)
  6. Earfy: live speech-to-captions (caption real-time, live conversations)
  7. Dragon Anywhere: dictation application that can be used by us deaf with hearing – have the hearing person speak and it will automatically caption what they are saying (if it is said clearly enough)

Best Apps for Learning ASL

  1. ASL Dictionary: comprehensive ASL dictionary with videos of more than 5,000 signs
  2. The ASL App: a hip app designed by Deaf ASL users to teach ASL (the one that Nyle is in!)
  3. Signing Savvy: learn ASL and join in conversations and more with the membership site
  4. SignSchool: vocabulary builder, dictionary
  5. YouTube: subscribe to Deaf YouTubers, search for classes. Download them through YouTube Red.
  6. Marlee Signs: learn ASL with Marlee Matlin
  7. ASL Translator: type in the English and get the ASL translation
  8. ASL Dictionary: over 5,000 signs, multiple ways to sign the same word and does not require internet

(note: don’t miss my post on 8 Sites to Learn ASL Online)

Best Alarm or Notification Apps

  1. Alarm Clock with FlashLights: alarm clock with flashing lights (and music)
  2. Alarmed Reminders + Timers: integrates with iPhone native Reminder app
  3. Loud Alarm Clock Best and Loudest Alarms 2: for people who need something REALLY loud (with no hearing neighbors, haha)

AND:  here’s how to set your flash alerts on your phone, which works for phone calls, messages AND your morning alarm clock instead of sound

The Best Deaf Apps

There are many apps for the deaf available, and many more that may not have been created specifically for us but are useful (like Dragon Anywhere).

While that is great, I look forward to more apps being developed, covering a greater range of what would be useful to us (I’m thinking kitchen integrations and home appliance alerts in particular).

Captions are sometimes called “closed captions” and sometimes “open captions”; in movies, they tend to be called “subtitles.” For this piece, I’m calling them captions, and I want to talk about reasons to add captions to your videos – and then send you over to a fabulous tutorial for adding them to your YouTube videos. Ready? Okay, here we go:

Reasons to Add Captions to Your Videos:

1. The d/Deaf/ Hard of Hearing

I’m deaf. This means that when I take out my hearing aids, I hear precious nothing, but there is evidently some hearing there for the hearing aids to pick up and amplify at all.

And I’m not alone! According to Gallaudet, 13% of the total US population is deaf or hard of hearing. This is something like 38 million people.

Now, if you want to ignore 38 million people, go right ahead, but it doesn’t make a lot of sense to me to do so.

2. Reaching Your Audience on Social Media

a. In the United States:

There are around  240 million people using Facebook in the United States alone, and 180 million on YouTube. People want to enjoy content on social media, but for various reasons, don’t always want the volume on.

The only way that people can enjoy video content without the volume on is through captions. If you add captions, you going to reach a significant portion of those 240 million on Facebook or 180 million people on YouTube.

b. Abroad

240 million on Facebook and 180 million on YouTube are the numbers for the United States alone. But the US is obviously not the only consumer of social media; in fact, the US is responsible for only some 20% of the traffic on YouTube.

This means that of the 1 billion people that use YouTube, only 180 million are in the US. Many, if not most of these people speak languages other than English, and many of them are swept away with American English.

If captions are added, the video content producer has a greater chance of reaching the 80%. And isn’t that why videos are made? So that people will watch and understand them?

3. SEO and Indexes

a. YouTube and Google Indexes

YouTube captions are read and indexed by both YouTube and Google. Adding captions and descriptions ads value to your video and weighs the search algorithm.

YouTube’s automatic captions, or “craptions” as they are known in the deaf community, are not indexed by YouTube or Google, as the captions are often wrong. High quality, manually-added captions bump up the SEO.

b. SEO

Search engine bots look for signs of relevancy left by humans. When a video has captions, it tends to increase video engagement – people watch for longer. This increases the likelihood of comments, subscriptions, “likes” and viewing, which raises the value of the video, thus increasing the SEO value.

In simple terms: if you add captions, people will like it. People will interact with your content. The bots of the internet will notice that and raise your video up, so when someone does a search for “funny cat videos,” yours will come up higher on the page.

4. Literacy

There is this funny little side benefit of having captions, and that is: literacy.

When I lived in Taiwan, embedded captions (in Chinese) were added to everything that was on TV. When I lived in Japan, captions (in Japanese) were added as a special effect, to emphasize content.

Because I was always looking at them, and my hearing aids picked up the sounds, I gradually became even more literate in both Chinese and Japanese. Now, I was young when I was living in both places (I first moved to Japan when I was 15 years old, and first lived in Taiwan when I was 16). Language was a lot easier for me to pick up then.

Fast forward to my kids.

My first born taught himself to read when he was 4. How much of that was actually “taught” and how much of it was learning to connect the captions with the sound, we’ll never know. But research says that captions help strengthen:

  • Reading speed and fluency
  • Word knowledge
  • Decoding
  • Vocabulary acquisition
  • Word recognition
  • Reading comprehension
  • Oral reading rates

This being the case, there is a good chance that the fact that our DVD player and TV were always set to play captions, coupled with the fact that we enjoy TV and movies,  helped him to connect the dots and learn to read on his own.

Are you sold? Yeah?! Well, you should be!

Not adding captions in this day and age makes absolutely no sense at all. Besides missing out on an opportunity to help your kids (or yourself) develop stronger literacy skills (and finally understand what Mumbles from Dick Tracy is saying), you’ll miss out on reaching millions of people and your content will rank lower if you don’t. You can’t even say that it’s too hard, because seriously. If my 8 year old can set up captions (and he does), then you can.

Here’s the link to the best tutorial that I’ve found out there, by the National Center on Disability and Access to Education :

How to Caption Your YouTube Videos

Pinterest-perfect:

4 reasons to add captions to your youtube videos and how to do it!

There is is this piece on The Establishment now called, “Nyle DiMarco’s Activism is Dangerous for the Deaf Community.” 

I feel compelled to write a post to respond to it, simply because I have so much to say. 

The author, Lisa A. Goldstein, is deaf and is slamming on Nyle’s efforts to promote deaf education and teach deaf kids ASL. She’s using the argument that because she is deaf and she doesn’t know ASL and was mainstreamed – but felt no isolation, despite being in a hearing family to boot! – that really, deaf kids don’t need to be taught ASL.

She goes on to say, “we’re deaf in different ways, and that should be ok.” That statement is kind of ironic, given that her entire post is pushing for mainstreaming and teaching deaf kids English as opposed to ASL and English. She herself isn’t going the route of ASL being in the mix being okay. She goes on to say that Nyle DiMarco’s activism in promoting ASL education for deaf kids is dangerous.

ASL and Bilingual Education for the Deaf: Dangerous?!

You want to know what I think is dangerous? A lot of kids growing up without language.

In her post, Goldstein says,

As part of his foundation’s efforts, Nyle is trying to get states to pass a law that requires bilingualism for deaf people—ASL and English. In other words, he wants to make ASL a requirement for deaf children, which infringes on parental choice. As long as parents are informed of all communication options, it should be up to them to choose what’s best for their children.

That sounds great! Awesome!

But this is the thing: IT IS NOT HAPPENING. Hearing parents have had the choice forever to do what they think is best for their deaf child, and simply too many deaf kids are deprived of early language acquisition, point blank. Deaf kids are falling through the cracks, wandering through early childhood and into school without access to a full-fledged first language.

This is exactly the case for more than half of all deaf kids – and if you think I’m joking, go and visit a deaf section of a public, mainstream school. You’ll find, as I did, that there are highschoolers with enormous language deficits because they never learned a language when they were babies, because they had no access to language. The couldn’t hear. Their parents didn’t teach them ASL. They were unable to grasp English. They were left out, lost, and deprived of language, full stop.

This fact is inconceivable to most hearing people, especially in this day and age where ASL is trendy. Hearing kids tend to know more ASL and have access to more ASL than deaf kids do. And if the deaf kids have no access to language in infancy and early childhood, guess what happens? That part of their brain atrophies and makes it incredibly difficult to learn later.

Ms. Goldstein talks about her parent’s choice of focusing on lipreading and mainstreaming for her own childhood, saying that they thought she could learn ASL later. Bravo for them, all right? But in my own – also deaf, mainstreamed and from a hearing family – case, guess what? I hear nothing without my devices. I’m 43 years old and struggling to learn ASL now. That whole “learn ASL later” thing doesn’t always work so well, because “later” can happen your brain is past the stage in which it can pick up languages easily. I’m just lucky that my hearing parents constantly checked my comprehension of English – I didn’t fall through the cracks like a lot of deaf kids do.

So listen. I don’t want to hear posts like Lisa A. Goldstein’s, that are defending a push to keep deaf kids without ASL. I don’t want to read things about bi-lingual deaf people being a “dangerous establishment.” I don’t want to read things that are asking us to fix ourselves up through drilling holes in our skulls and wiring us with cochlear implants, or having us wear hearing aids 24/7 so that we can try and communicate orally.

I don’t want to read things that are essentially promoting more language deprivation for deaf children. We need to move past that, focus on ASL education for all deaf kids, move into English and on to other languages if the child has a bend for that.

Let’s start with what we know a deaf person will need in their life. Because even if they do have cochlear implants or wear hearing aids, at the end of the day, they take them out and are deaf.

:// end rant

I had a lot of people send me the link to the news release about two young inventors who have supposedly discovered a way to translate ASL into spoken English. The HuffPo article about it is linked here.

Confession: I rolled my eyes when I saw it. 

I just couldn’t believe that something like that could actually do what it claims it will. I mean, how on earth could it ever capture the facial expressions that are so necessary to signed language? How? At best, it seemed to me to be a sort of tangible YouTube captions, taking overly exaggerated gestures and maybe sometimes getting it right.

But did I say that to anyone who sent me the link?

Why no. No, I didn’t.

I am pushing myself to stay as positive as possible about things, and trying to be all, “yay!” instead of “nay.”

So I didn’t say anything besides the fact that the invention looks cool and I hope it will work. Both are true: I do think the invention looks cool and I hope it will work. I just don’t personally think it will.

Some new articles by people far more expert than I have emerged and are worth reading. This is one: Ten reasons why sign-to-speech is not going to be practical any time soon. It’s really fantastic, and kind of gives me the balls to talk a bit about something that bothers me.

I don’t actually think that implementing some type of rudimentary, less-than-perfect technology as a part of disability access is all that helpful. I think you should get it right, or test it more.

This is the problem, as I see it: when something is invented or created as a temporary access solution even though it is far from perfect, too often the real solution is placed on the back burner. It becomes like, “yeah, well, it’s better than nothing,” so the permanent ramp isn’t placed, correct captions are not developed, appropriate class supports are not implemented. Nothing to me illustrates this better than YouTube captions.

YouTube captions take speech and auto-caption it. Have you ever gone there, turned the sound off completely (if you are hearing) and relied solely on the auto-captions to guide you through what is happening?

If you have, then you know it’s a headache. It’s confusing. It’s often gibberish. It’s real work on my part to fully discern content.

But let me tell you! When I ask for captions for videos, I am told more often than not that the “YouTube captions are there!” People don’t bother to caption their videos because they are relying on those crappy YouTube auto-generated ones, which is supposed to be better than nothing. I personally think they are worse than nothing, because they make people try less and put the full burden of figuring content out squarely on the person who needs the captions.

Most of the time, when I see that my only course of action is to use the auto captions, I quit. I won’t even go there anymore, I’m just too sick and tired of trying to figure out a bunch of content that makes no sense.

Given that, it’s not better than nothing for me; it is nothing. And it’s a  nothing without recourse – I can’t knock politely on the video creator’s door and ask for captions because they simply say, “but YouTube captions are there!”

This idea of creating gloves to translate ASL might be a great one. But I sincerely hope they don’t come remotely close to marketing it unless and until they actually have it down. Sending yet-another thing out into the disability community that doesn’t actually do the job doesn’t make our lives easier; it makes it harder. Because not only are we going to have to still try and figure out how to access content, but we’re going to have to battle the notion that it’s done already by the imperfectly designed “better than nothing.”

:// end rant.

Katherine and I are presenting at SDS this year on Deaf Identity.

We really wanted to talk about it because we have so many questions ourselves, about what is means to be deaf – or Deaf. She wears cochlear implants, I wear hearing aids. She is fluent with ASL, I am not. Neither of us hears much – if at all – when we take our respective devices out.

After working on our presentation for a while, we realized that we don’t have answers at this point. We have a multitude of questions.

And so… this is about just that. The questions that we – deaf women, deaf mothers – have about deaf identity.

Deaf identity What is it?
What is identity? Is it “an instance or point of sameness or likeness”?
I don’t know… is it? Or is it “exact likeness in nature or qualities”?
I don’t know… is it? Or is it ““the state or fact of remaining the same one or ones, as under varying aspects or conditions”?”
I don’t know… is it? Or is it “the state or fact of being the same one asdescribed”?
I don’t know… is it? Or is it “condition or character as to who a person or what a thing is”?
I don’t know… is it? Or is it “the condition of being oneself or itself, and not another”?
I don’t know… is it? Or is it, “the sense of self”?
If it’s the “sense of self”, then how does being deaf fit in? Or how does being deaf relate to a sense of self?
What is being deaf anyway? Yeah, what is it?
Is it the absence of hearing? Complete and total?
Is it a type of hearing? Partial?
A perception? A synthesis of sound?
A presence of silence? A type of processing?
Can you hear and be deaf? Do you need to be Deaf to be deaf?
What is Deaf, compared to deaf? Isn’t Deaf related to culture?
What is culture? Isn’t it defined as “the sum total of ways of living built up by a group of human beings and transmitted from one generationto another”?
Is it? Or is it, “the behaviors and beliefs characteristic of a particular social, ethnic, or age group”?
You really are a dictionary, aren’t you? I don’t know; am I?
Maybe you are, maybe you’re not, but the question remains, right? What question?
If culture is the behavior and beliefs characteristic to a particular social, ethnic, or age group, or if it’s sum total of ways of living built up by a group of human beings and transmitted from one generation to another, how does this apply to being Deaf? Isn’t it because the Deaf use sign language as their primary form of communication?
But can they hear at all? I don’t know; can they?
Is hearing or the lack of hearing critical to forming a part of Deaf or deaf culture? I don’t know; is it?
I mean, do you need to have an absolute absence of sound to be deaf? I don’t know; do you?
If sign language is an integral part of Deaf culture, then what about people who don’t sign? People who are deaf?
Yes, what about people who have an absence of hearing but don’t know sign language? Are they considered deaf?
Or do they consider themselves deaf? What would make someone consider themselves deaf?
Is it an absence of hearing? Or a presence of silence?
Is it a way of processing sound? Can you hear and still be deaf?
Can you use hearing aids and still be deaf? Or cochlear implants?
Are you still deaf if you use technology that enables your ear and/or brain to hear sound? Or do cease to be deaf once you can hear?
What’s the criteria? IS there criteria?
Or are there only questions? Without answers at this point?
The end Any questions?!

This ad by Samsung is going viral – I know this because I was sent it by no less than 5 people and whenever I’m sent something by no less than 5 people, something is seriously going VIRAL!

Here it is:

The product itself looks cool and I want to know more about it.

But I was left feeling so sad.

The video is touted as “heartwarming”, mostly I think because so many people gathered to learn sign language for the purpose of creating the ad.

But to me it emphasized how lonely it really is to be deaf in a hearing world, to be deaf in an aural/oral community. For every one of the interactions that the guy in the video had with the people who learned sign for Samsung, he has 10 interactions in real life, where he is left out. Where he has to bend over backwards to figure things out. Where he is struggling. Where he is isolated.

And the thing is, being deaf is largely a non-visible disability.

If you are hearing and actually do know sign language and wanted to talk with a deaf person, how would you know we are deaf? How would you know to sign?

You just don’t know, do you.

I feel like that’s one thing that I wish people would understand about being deaf. How isolating it can be. How videos like this aren’t really touching in the aspect of people coming together to learn some sign for an ad, but how touching it is that this man doesn’t have access to communication and inclusion in the same way that most hearing people take for granted.

Hopefully that product will actually help. Anyone know more about it?

Addendum –

This post just came out and I think it says it all better than mine does – please go over to Ocean’s blog and read her post, “Sorry Samsung, But You Missed the Mark“. It’s brilliant.

Andrew Solomon wrote a book called “Far From the Tree” that was all the rage a couple of years ago. In it, he explores identity through analyzing multiple disabilities, along with homosexuality, children of rape, prodigies and transgendered people.

It has taken me literally all this time to work my way through the deaf chapter. Whenever I’ve started to read that chapter, it’s as if the waterworks are turned on behind my eyes and Just. Don’t. Stop.

Without getting overly dramatic about it, I think my emotions regarding the chapter are more to do with triggers in the chapter on my own experiences growing up deaf in oral communities, schools and family, and less to do with Solomon’s writing.

But there was one thing that stood out for me enough to want to write this post.

The future of ASL

Solomon concluded his chapter by saying that since parents are choosing cochlear implants more and more, the number of the deaf is decreasing, and it seems likely that ASL is a dying language.

But he doesn’t seem to understand – as many parents of deaf children apparently also don’t understand – that being deaf isn’t something that you turn on or off with your technology. My hearing aids help me to hear, just as cochlear implants help people who have them. But at the end of the day, we take these devices off and we are deaf.

So if parents or people choose to utilize technology like hearing aids or implants, I would love for them to think about what happens when the devices come off?

What happens when you take the hearing aids or implants off?

You don’t wear the external device that is attached to the cochlear implant 24/7, nor does one wear hearing aids 24/7. What happens then? If you don’t teach your kid sign language and give them a way to become fluent in it, you are making your child completely reliant on machines to hear and communicate, and without language when not wearing them.

Even if I could, I don’t want to wear my hearing aids all the time. My dear friend Katherine originally had two cochlear implants. One implant had to be removed due to infections and she is having issues with her remaining CI. She was raised completely oral – so if she had not made the independent decision to learn ASL as an adult, where would she be now?

I am not sure I can emphasize how horrible it is to be without a means to communicate.

Want to tell your lover you want some coffee? No hearing aids or implant in; oh, write it on paper or struggle to lipread or have her shout at you. The effort of it is more than exhausting; it is spiritually numbing and disempowering.

I think it is absolutely critical that parents be educated in the importance of ASL and to make sure their deaf kids can become fluent in it so that they won’t be lost without their devices. I think parents need to realize that their child can be fluent in ASL and still wear their device – and that helping their child to learn and utilize sign language will actually empower their child, give them greater options and opportunities, and leave them feeling safer for when they are not wearing their device.

I don’t agree with Solomon’s take on the ‘one or the other’ – I don’t think that ASL is or needs to be a dying language because of the emerging popularity of cochlear implants or more sophisticated technology in hearing aids.

 

2015: The Year of the Deaf Child, guest post by Julie Rems Smario

********************

It hit me hard again… The Deaf child rarely tells the stories.

If you search for stories about raising Deaf children, you will find stories of hearing
mothers and fathers and grandparents of Deaf children. Their stories are focused on impairments, and how the surrounding family is affected. Their stories often show that the Deaf Child is the center of their pain.

The Deaf Child is not born to inflict pain on those who love them.

During past few years, with the exponential growth of hearing dominated early intervention and deaf education resources, more and more hearing people along with hearing parents and family members are using social media to write about raising deaf children, or children with “hearing loss” (now a common description –thanks *sarcastically* to the influence by the medical professionals).

Once again, the Deaf Child rarely tells the stories.

Even the “hearing loss” awareness campaigns feel like allies and medical professionals reaching out to more allies and medical professionals. The Deaf child is disempowered and forgotten in the name of “overcoming deafness” to accomplish the society’s hearing standards. Deaf children are often treated like the objects of inspiration and burden.

The Deaf Child has been hijacked.

2015 is the year to push for the inspiring stories from Deaf children and Deaf adults who had wonderful experience growing up Deaf. With the resources we have now, it is so easy to create the Deaf Child platform with inspiring stories. Deaf children and adults can dominate social medial about the following: It is okay to be Deaf; it is healthy to be raised bilingually (ASL and English), Deaf schools are the Least Restrictive Environments, and Deaf children can “be” as healthy bilingual Deaf human beings accomplishing anything they dare to dream for.

2015 is the year of the Deaf Child.

Let’s make Veditz proud by ending the war on Deaf babies.

*********************

julie rems smarioJulie Rems-Smario is an Education Consultant at California School for the Deaf, in Fremont where she can further her goal to preserve, protect and promote ASL for all children. Founding CEO for DeafHope, Julie was nationally recognized with several awards such as CNN Heroes and E-Women Network International Humanitarian Award for her work working with Deaf survivors of domestic and sexual violence.

 

Links:

Who Will Answer #WhoWillAnswer

Deaf Hope

 

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I was interviewed recently for a hearing magazine and one of the questions that they asked me was, “what would you say the greatest challenge of being a deaf mother is?”.

The first thing that came to mind was last week.

I was sitting on the bench outside of Moxie’s class with Micah and Moxie’s new speech therapist. Moxie came out and climbed into my lap and the speech therapist said, “awwwww…!!!!!” I hadn’t heard anything to say “awwwww…!!!!!” about, so I asked, “what?”. He said that Moxie said, “Mommy!” – I asked Micah if he heard it and he said yes. “Yes, Moxie said, “Mommy!” She said it just now”.

And maybe my eyes filled with tears because I didn’t hear my little girl say “Mommy” for the first time.

deaf mother (2 of 7)

It’s not easy talking about the challenges of being a deaf mother, living in a hearing and oral community.

Not easy, you see because I get so sick and tired of the ‘woe is life’ posts written by parents of kids with disabilities, I feel wretched when they are crying over the hearing aids, implants or ear tubes that their child needs. I know that I swing hard on the other side, like a pendulum that is whacked and connects with the ball and then swings harder from the force of impact. I don’t want to talk about the hard stuff because I don’t want parents to read what I say and only hear the challenging parts of what I am saying. I don’t want them talking about how difficult life is going to be for their deaf kid because – OH MY GOD! Hearing aids!

I simply don’t believe that anything is ever as cut and dry as we like or want it to be. The complexities of the deaf experience are not easily articulated, not least because like all experiences, it’s not one-dimensional. Being deaf is not this awful, horrible, bone-shuddering experience – but it’s not a total ride in the park either, especially if you live with hearing people, in a community that relies on telephones and oral speech.

Isolation

It’s hard, not least because you are isolated. Maybe I should use “I” statements here, since I’m really just talking about my own experience.

I am isolated. Being deaf is isolating. Think about it, and maybe even plug your ears at some point when you are in a conversation with friends. Look at their lips and try and follow what is being said. It’s just not easy, is it? It’s not their fault, it’s not my fault, it’s simply the way it is.

But it’s isolating. I can’t jump into conversations, I often lose the thread of what is being talked about. I get overwhelmed with trying to focus on what people are saying and end up spacing out which does nothing for my credibility as an interesting person who might make an interesting friend.

I have to ask people to repeat things 50 million times and that gets old, fast. I often don’t even know that I need to ask them to repeat something and that makes me look stupid, fast.

There is nothing quite like that particular brand of awkwardness that comes from responding to something incorrectly, and I’m talking about like, “hey, how are things on the farm, Meriah?” – “purple!“. Their faces have *wince* written all over it and that helps – I  can at least laugh and point out the obvious, “oh, did I just say “purple” when you asked me how things are on the farm or something?”

And if they laugh too, it makes it all a little better, but there is no denying that fundamental fact: being deaf in a hearing community can be an experience in isolation.

deaf mother (1 of 7)

Isolation: I try to cut through it. I am not consistent about my effort though… it goes in waves. I will attend something or other, try and participate, get completely fazed out and feel craptasticly DEAF by the end, like I just want to run home and cry and play on Facebook. Sometimes things end well, like I heard enough to connect and that makes everything enjoyable enough to want to repeat the experience.

Or not. Sometimes even if it’s enjoyable, I don’t want to repeat it – I get nervous about jinxing it, interaction being hard again, or I get nervous about the effort it takes to connect.

I feel tired before anything has even happened, and even while I want friends and I want to hang out with other women so bad that it sometimes literally drives me crazy, I just can’t face it all.

Being deaf is isolating

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I’ve often worried about not being able to hear the kids in a variety of contexts. I worry also about not being able to hear what is said TO my kids. I worry about someone saying something mean to one of my children and my standing Right.There. with some vacant smile on my face, looking at the trees, unaware and clueless. And then if my kid cries (with tears or with a hurting heart), it will be up to my child to tell me what happened, and I absolutely hate that.

Oh my God, do I hate that.

So I try and focus on not worrying – I mean that hasn’t even happened (to my knowledge) and I have enough that has happened to keep me busy.

deaf mother (3 of 7)

The Challenges of Being a Deaf Mother

Maybe that should be, “The Challenges of Being a Deaf Mother Who Chooses to Live Off the Grid.”

Because, let’s see. We can’t get a landline for a telephone (- they literally won’t come out here to put in the poles), video phones fall under that umbrella. I can use Facetime, yes, but only at certain times of the day (when others in our valley are not downloading or streaming videos!). But how many dental offices do business with you using Facetime?! Right. I need to use the cellphone and that’s almost exactly like those old Saturday Night Live videos of Al Franken searching for access with the antennae on his head. It’s so ridiculously and comically absurdly awful that IN REAL LIFE I feel like a skit from Candid Camera.

In a nutshell: the nitty-gritty knuckle-crackin’ stuff of being a parent who gets things done is head-bashingly hard for me.

In fact, it is to “hard” what crawling up Kilamanjaro on your knees is – which is to say: it can be done and it’s no fun. Only if you do the Kilamanjaro one, you’ll get a lot of recognition – for me and for others like me, you get a dental appointment. If you are lucky.

deaf mother (4 of 7)Sometimes I wonder how much of all this is just me.

If I was a more “together” kind of person, would it be easier? I slept with all of my kids because I couldn’t hear them cry – I would wake up from the vibration of their crying. Deaf people asked me why I didn’t get a video monitor with a bed shaking alarm – and honestly, I never even thought such a thing existed. So there you go; it doesn’t have to be the (perhaps more difficult) way that I’ve made it.

I could have had a video monitor and I could have rigged it to a bed shaking alarm. I could rig a phone up some how (how???) and get access without it being what it is. I could get an interpreter for everything, walk around like a boss with a posse. Make my family sign in order to communicate with me. Forget about being so oral – it feels stupid anyway after you know someone has repeated something to you enough times to make their eyes twitch.

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I’m at the point in the story in which I want to start stacking the positive.

I mean, my fingers are reaching for the keys in a fierce way – but for once, I just don’t want this post to be about finding the positive, about the glories of being deaf, about how great it is to live in a world of silence.

And by not writing about that right now, I’m not saying it’s not true; it is. I do love my silent world, I  love how it feels soft and muted, like a hazy dream with beautiful colours. I like being able to choose to hear and I like being able to switch from one blended-watercolour-world to a sharp, crisp, focused one just by putting in and turning on my hearing aids. And I want parents of kids with disabilities to remember that – I went them to balance that with what I’m saying about the isolation.

It’s not as cut and dried as we might want it to be: as I’ve said, being deaf is not a one-dimensional experience.

deaf mother (7 of 7)

 

 

I’ve been in service dog training for this past week and I have one week to go. I’m talking 9-5 training and it’s hard catching up to a dog that is smarter than I am.

I’ve developed a little Q & A in anticipation of some of the questions you might have about service dogs and this whole process:

Aren’t service dogs just for the blind?

Nope. There are service dogs for just about every disability, including autism and Down syndrome! The dog that I will be partnering with is a trained Hearing Dog – a dog that has been specifically, professionally and intensively trained to work with the d/Deaf.

How long does it take to get a dog?

The whole process took me over 2 years! The application process is LONG: there is a lot of paperwork, many, many questions, an interview, then you basically have to wait for your dog to be born and raised through puppyhood

Puppies! I want one!

Oh man, the puppies we see around here are adorable! My dog is not a puppy (- she’s 2 years old) but she was raised by a puppy handler until she came to train.

So she’ll be able to tell you when someone is talking?

Yes, no, maybe so – she’ll be able to alert me to sounds that we train her on and work specifically with. It wouldn’t make sense to train her to alert me whenever someone is talking and it’d be kind of impossible to alert me to one person alone talking.

I think it makes more sense to work with her on just alerting me to voices saying “Meriah!” or “Mooooommmmmmmmy!”

What else can she alert you to?

She can tell me when the phone rings, a doorbell sounds (- not that we have a doorbell on our yurt), she can tell me pretty much anything that I train her specifically to alert me to. YES! Amazing, huh!

Do you love your dog?? Have you met your dog??

Yes, I met my dog and I cried when I did. We all did, all of us Trainees, when we all met our dogs. It was so emotional, meeting this creature that we’ve waited so long for and need so much.

“Do I love my dog?” – well – I was fighting attachment to my dog from the first time we worked together – I truly have been matched with an exceptional animal.

I want to see a picture! When are you going to post pictures?!!

My dog was raised by a puppy handler and then came to the training center for intensive training when she was old enough. Since the puppy handler put a lot of love and time into the care of my dog, the handler needs to be notified that my dog has been first pre-matched, then final-matched. Just basic consideration at work.

As soon as that happens, I WILL POST PHOTOS!!!!!!

In the meantime, check out my photos on Instagram (- I’m @meriahnichols there, if you care to follow my feed), or on the blog Facebook page (- linked here)

meriah nichols

Did I miss anything? Are you curious about something else? Ask! 

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this post was originally published on May 30, 2012 – it has been re-written and re-published as a part of the “Challenge!” Summer Blogging Series – open to all.

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My Connection with Disability:

I was not born with a disability. I am one of the many of us that acquired my disabilities and joined the club of Disability after birth.

I went through the windshield of a car when I was 4 years old. This gave me Traumatic Brain Injury, an auditory processing disorder and most likely kick started my deafness (but we are not really sure). My PTSD was acquired later, as was the depression.

Even though I grew up with multiple disabilities, I had absolutely no connection with disability. For my family, people who were regarded as having “real” disabilities were invariably people who use wheelchairs. And since I didn’t use a wheelchair, I was just a misfit screw-up who needed to try harder, apologize more.

It’s worth mentioning here that my race was of paramount importance – you see, I was growing up in countries in which I was the minority. No one else around me was white. My whiteness was what was noticed first, commented on, teased, discriminated against. The fact that I am deaf or that I’d fall asleep in class if the fluorescent lights were used was a blip on the screen compared to my whiteness.

My disabilities hit me when I would return to the United States. I’d walk through customs and suddenly, my skin colour would fade and BAM! My deafness, my TBI and all the rest of it would return.

I wanted that about as much as I’d want to walk on a nail – and I did everything in my power to “fit in” and be like everyone else as I saw them in Mainstream, USA. I wanted the gloss, sparkle, I strived to be uber-thin, got the bleach blonde hair, worked on my tan. I took my anger, hurt, pain and frustration and bottled it all up.

Every. Single. Ounce.

I turned on myself – I was a cutter – I felt so much internal pain and anger, directed every bit of it on hurting myself in any way I could. I would cut myself with small knives, scrape my flesh off even with my fingernails. I was an anorexic/bulimic for years as well as an alcoholic, chain smoking Tokyo party animal who would take any drug offered. And I do mean any drug.

And I was so good at faking it. I remember in particular one night I had stayed up late, drinking and crying and scraping myself and struggling with the overwhelming desire to just die. I went to work the next day and a coworker of mine said, “Meriah, I just love your smile – you always seem to be so happy! You are the happiest person I know!

Well.

It’s impossible to get help when everything is so carefully and tightly tucked away and compartmentalized.When you know you need help but since you think it’s all your fault, feel like you don’t deserve it and can’t ask and the little bits that seep through the seams of an alcohol/drug laced blackout on a street in Roppongi drown in the cacophony of a chaotic life.

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I went through a lot of careers. My brother and I have been working hard since we were 11 or 12, and nearly completely self-supporting since we were 15. I’ve worked just about every job imaginable, and worked hard, worked well and worked successfully, despite being deaf and konking out from TBI. I graduated from college at 19 – trained as an Elementary School teacher and I taught for a while. Then I went to graduate school when I was 24, was out and working again in curriculum developer, teacher training, school management. I shifted slighted from there to corporate training. I taught a lot of English in Asia.

When I returned to the United States at 29, I had a very difficult time finding a job. Part of that was the market at that time, but a huge part of that was my deafness which as always, became an issue upon re-entry. Through sheer dint of having a hard time myself finding a job, I ended up in the “disability industry”, starting and managing a program for students and graduates of UC Berkeley with disabilities.

It was UC Berkeley that changed my life.

Because you see, UC Berkeley is the home of the Disability Rights Movement. It’s where The Greats like Ed Roberts and Judy Heumann fought and won; it’s close to the San Francisco City Hall, where the historic 504 Sit In was held. “Disability” in Berkeley isn’t about pity, weakness, disenfranchisement, powerlessness: “disability” in Berkeley is about pride! It’s about claiming our identity, our culture, our tribe!

Bit by bit, day by day, I felt my resistance to connecting with ‘disability’ slipping. I met more and more people, representing every type of disability one can think of. Activists, other professionals like me with disabilities. Highly capable, intelligent people who have a disability.

The relief in connecting, in finally identifying with a group that made sense to me, that were among my own, was strong. My tears that came when I heard “Nothing About Us Without Us” for the first time were heavy, full of that pent up emotion of desperately trying to “fit”, realizing I couldn’t, and then angry at having felt the need to do so at all. Tears from the frustration at having people without anything “wrong” with them telling me what to do, what I needed. Or what other people with disabilities needed. Like a group of whites deciding what was best for blacks before the Civil Rights Movement.

I starting to “come out” as a person with a disability when I was there, but I fully and emphatically crossed over after I had Moxie.

And now…

Disability is a part of me – as a physical and cultural part of my life as a person. It defines me, it is who I am, it a point of pride with me – #deafpride ! This is my tribe, this is my culture, and this transcends all else.

Like a prism reflecting rainbows by the light captured within, disability is a way of seeing the world and experiencing it from a unique and particular vantage point.  – one that has taught me well and early the value and strength of the spirit and the transient nature of the flesh.

“You don’t have a soul. You are a soul. You have a body.”
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Please join:

 

I am deaf, and have been since I was a child – and after asking hundreds of other deaf people about dumb things that have been said to them, I compiled a list based on the results:

10 Dumb Things Hearing People Commonly Say to Deaf People:

1. “You don’t look deaf!”

images

There is no way to look deaf. You don’t need to ever tell a deaf person, “you don’t look deaf!” because really, how could you look deaf? Carry a grammaphone around? Have ears of some type of better yet, something in American Sign Language (ASL) tattooed on your forehead?

2. “CAN YOU HEAR ME NOW?”

 

picard ears

A lot of people shout at us. But think about that for a second. Shouting at a deaf person. Shouting at someone who can’t hear?
Okay, it’s true that many deaf people can hear in various degrees, but shouting is almost always simply an exercise in rudeness and condescension, not to mention futility.

3. “DOOOO YOOOUUUUUUUU WAAAAAANNNNTT COFFFEEEEEEEEEEE?”

 

picard facepalm

Add talking uber-slowly to shouting.

4. “Oh hey! I sign too!”

 

picard signing

I can’t count the number of times someone has whipped out their hands and their own creative interpretations of signing a cat, rain or sun… “creative” being the operative word. But on the heels of this, you probably want to remember that:

5. Not All Deaf People Use Sign Language Either!

Although I have been deaf for most of my life, I only started to learn some sign language when I was 30.

Deaf people are not born knowing how to sign and if you become deaf, you don’t automatically receive an infusion of sign language along with your first hearing aid or gulp of silence.

 

6. “You can talk?!”

picard talk

 

Not everyone can talk, and not everyone enunciates like a hearing person does, yeah! Many of us deaf folk do indeed talk!

7. “So…you lipread”

picard frowning

 

Personally, I am a ninja at lipreading. I am a fierce lipreader, so good that most audiologists are shocked when they they discover how little I really hear. But I’m not the norm – many of my deaf tribe don’t lip read at all and many more still do lip read a bit but don’t want to use it as a means to communicate with a hearing person.

It’s a lot of effort on our part and it’s exhausting – so it’s not something to be taken for granted, if someone does it at all. Just sayin’

8. “Do you drive?”

double facepalm

 

Duh.

9. “Why don’t you get a cochlear implant?”

picard borg

 

A cochlear implant is the answer for some people but it’s not for everyone. You need to be profoundly deaf with no hearing to lose to get one at all, and for many deaf folk, being deaf is not only the absence of hearing but it is the presence of a culture, the Deaf culture.

Not everyone wants to hear – and not everyone would want to give up being Deaf, or would want their children to hear.

10. “I’m sorry”

shock

 

Oh, if I had a dime for every time someone told me “I’m sorry” in response to my telling them I’m deaf….. yeah….

11. “Oh, that’s okay”

– blank look –

[yay! she’s telling me it’s okay that I’m deaf!]

happypicard

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And so…

Being deaf has had its difficulties but most of those difficulties are related to access. It’s hard to find and keep jobs, navigate the system and receive a solid education when society revolves around hearing in the way that it does

But hey! Being deaf isn’t a bad thing and it is certainly not something to mourn – it’s wonderful being able to reach up and turn my hearing aids off and enter a realm of total silence when my kids are screaming, better believe me on that.

– the end.

PS

Remember how I asked literally hundreds of d/Deaf people what dumb stuff was commonly said to them by hearing people? Yeah, well, the best response that I got was this:

– My husband and I (- both Deaf) – were in a restaurant and a waitress came over and saw us signing and said, “Oh you are deaf! Great! We just got some new braille menus!”

picard giggling

 

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My friend Meredith is teaching a class over on Clickin’ Moms – check it out – it’s more than interesting; it’s fascinating. I don’t want to talk much about it since that would be giving it away and I think you should just sign up since it’s worth it – but the major thing she is talking about in her course is telling the truth. That is, the truths that we tell people and how that’s reflected in our photography.

I have been thinking about that a lot lately – truth telling. I think it’s because here on this blog I talk about being deaf all over the place. It’s in the bio, it’s in the About section – I say it over and over, right?

Why do I talk about being deaf so much?

I think I like saying it partially because I have this fierce desire to connect with other deaf folks – I want people to know who I am in that regard right off the bat in case they are too. I also want to help normalize being young and deaf. This isn’t an old people thing, y’all. Anyone can be deaf and I hope I show through my own life example that it’s soooo not the end of the world. You can be deaf and be and do anything you want – and I hope to offer that to parents of kids who are deaf who read this blog.

And then – in deeper vein that you can’t politely talk about very often, it’s also a matter of reclaiming my own identity. You see, I was ashamed for so long in a way few people can comprehend about being deaf. I was ashamed to my marrow, I questioned my worth as a person, the validity of my own existence. It took working in Berkeley and being around the powerful disabled community there for me to really understand what disability – all disability, including my own – is about. Which is to say, it’s about a new type of diversity, it’s a different way of seeing, feeling, navigating, hearing this world – no more and no less and like all components of diversity, it makes our world stronger and richer.

So I talk about being deaf.

I talk about being deaf for those reasons on this blog but in real life, I don’t talk about it very much, if at all. The reason that I don’t is mostly because it’s so intensely uncomfortable to go through all the stuff that people just don’t know what to do with.

 People don’t know how to handle deaf people.

They don’t know how to handle deaf people – they wonder if they should try and make up signs for me? Like hey, “sun!” and point to the sky and make up something that they think looks like the sun. Or pull out their broken finger spelling? (I always feel pretty embarrassed for them)

Or people do crazy shit like over-enunciate while talking EXXXXXXXTTTTTTRRRAAAAAAAAAAAAAAA SSSSLLLLLLLOOOOOOOOOOOOOOOOOWWWWWWWWWWWWWWLLLLLLLLYYYYY. Oh my God. I had this former co-worker that would say stuff to me like, “do you have your hearing aids in, Meriah? DO YOU HAVE YOUR HEARING AIDS IN? ARE THEY IN???” before she’d talk to me, or others who would never, ever, but NEVER talk unless I was looking directly at them.

You can’t blame me for not wanting to talk about it when I get such asinine responses, can you?

I normally just wade through – I lipread, I pay attention, I do my best. When I’m tired, I turn off. And that’s that.

Here on the beach though, where I spend so much time without my hearing aids on, it’s different. I can’t hear almost anything. If Mikey is around when people interact with us, I might wing it, but if he’s not, I find that it is easier to just tell people right off the bat… and then I get to have fun wincing through the responses.

But back to the subject:

telling the truth

My being deaf is something that is enormous in the context of who I am as a person. As a fundamental part of my physical identity, it should be something that I always tell people in real life, but it’s not, simply because I don’t feel like dealing with people’s reactions that end up making things uncomfortable in my relationship with them.

They don’t treat me normally anymore. And since I enjoy being treated normally, I don’t want to tell them.

My friend Meredith is talking about how truth telling is reflected in our photography in her course, and like I said, I think you should check it out.

meriah nichols

 

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100 years ago, we had this:

CAN YOU SPEAK A LITTLE LOUDER?!
CAN YOU SPEAK A LITTLE LOUDER?!

Or was it this?:

HUH?!
HUH?!

Whatever, they were huge honkers!

Then we got this:

images (2)

… which was right before we moved over to BEIGE:

r8416a

BEIGE has been one huge wet blanket on hearing hotness.

The very fact that they are trying to “blend” sort of highlights that you think you have something to “conceal” (and nevermind the fact that most people don’t even have BEIGE skin tones!).

Which just makes it worse, one giant shout out:

YOU ARE DEAF! Hide it! Get a “neutral” hearing aid, no one will even notice  it!

hearing aid(1)
Blends right in, doesn’t it!

…cuz right, yeeeeeaaaaaah. No one is going to notice honkers like those jetting out of your ears, and golly, you are probably going to forget you are wearing ’em too (until they dent your ear permanently with their weight! Or start squealing with all their glorious feedback!)

ha1

Oooh, sexy.

Hot, hot, hot!

Now, this is what I grew up with, those “flesh coloured” bits of delight that “no one will even notice!”

Around high school, I got to thinking about eyeglasses and how they went from these kinds of things

glasses

To what we have now, where people WHO DON’T EVEN HAVE BAD VISION WEAR GLASSES!

Just because the frames are so cool.

I wanted time to just fast forward and I could be in an era that had smokin’ hear ware, and not one in which it all screams “geriatric” (- but my own Grandpa Jack cuts out the hearing aid coupons he has no use for because – even at almost 90, he has perfect hearing, take that “geriatric”). That not being possible, I crossed my arms, pouted for a few decades and am now seeing some exciting changes:

IMG_3770Cute.

imagesCreative!

siemensvibehearingaidOh wow. Colourful. And what the hell IS THAT?

It’s like a snap on case over the hearing aid which goes in the fold of your ear, not behind or stuffed in your canal.

Neat.

Here’s another look:

images (4)

soundsgood (1)Sleek. An earring. A hearing aid. A very hip lady.

blog_futureperfect-hummingbird-audicus-hearing-aids2

NOW we are starting to really talk!! This is moving into the realm of “Get a Load of My Juicy Hearing Aid!

This baby screams bright, fun, fresh, don’t-give-a-shit, just play!

I love it. Not sure I’d wear it, but I love the balls.

Moving on, this is something I’d wear_41332479_necklace203

Snazzy, isn’t it? Is it a hearing aid? A necklace? An earring? A cleavage-enhancer? I DON’T KNOW BUT IT”S COOL!

deafinite-style-hearing-aid-conceptThis one is my favorite. Want a closer look?

images (1)YEAH! It’s a freakin’ HEARING AID! How sweet is that?!

I know!!

I really like that. If I had access to it, I’d enlarge my ear lobes to fit one of those in.

Here’s another uber-mod type:

blog_pearson-lloyd-hearring-audicus-hearing-aids1Gorgeous, right?!

463fpressureaid_01Even this one isn’t so bad. It’s not like the typical medical beige wad of gum that is plugging up our ear canals in the name of “hearing”.

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That’s my little report for today, folks. The future is looking bright for us. Or rather, for our kids. Hopefully acceptance of us deaf folk will come as far in the future as it has already for low-visioned and poor-sighted people. So not being able to hear without our hearing aids will be about as big a deal as some astigmatism is now – and people with great hearing will be faking it just to make it with a cool bit of hearware.

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There was a great story on this lady who is, like me, a fierce deaf lipreader and she wrote about what a great equalizer Facebook has been for her. That it allows her to participate in ways she’d never be able to, in real life. (the story is here)

I couldn’t agree more with everything she wrote.

One of the alluring elements of Facebook is that I am on equal footing with everyone there. Facebook is about content, written content. It’s about stories and nuggets of life, condensed into status updates and visual memes. I can be in a group chat there and even while I enjoy it, I know there is no way that same thing could happen in a real-life room.

No way.

There is absolutely no way I could focus on more than one person at a time, and with many people to focus on, I’d quickly become exhausted and want to leave.

Lip reading, you see, drains your brain like nothing else. Try it! Just plug your ears and go to a store and ask for help finding  the pasta noodles. If you want something easier, just lower the volume on your TV until you can *just barely* hear, but can’t hear well enough to understand what anyone is saying. Then focus on their mouths and decipher the conversation.

photo(2)

Maybe that’s one good thing about lipreading: I have next to no tolerance for boring or stupid talk. I don’t suffer through stuff like others do. My brain just shuts off and that’s it, I’m outta there. And it’s not even necessarily by choice; my brain really does just shut off (trust me, there have been many a staff meeting in my life when I wanted to be tuned in but I could not sustain the brain drain on focusing through the boredom).

I’m not going anywhere deep or meaningful with this post. I’m just babbling.

It was great to read something from someone that is from my own tribe.

Speaking of my own tribe and interesting pieces, check out Deconstructing Disability, a little bit of brilliance from the mighty Lawrence Carter-Long.

Holy Wow, but that’s every kind of cool, isn’t it?!

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Last week I made a couple deaf memes –

…and Mikey liked this one (- he used to call my hearing aids my “chastity belt”)

These ones I found around the internet – I think they are pretty great too:

I am pretty sure my voicemail message does say that.

Oh yeah, baby. Remember the Chinese people talking in old movies? Smile, nod, nod smile? That’s me all right. One of the things I loved about actually speaking Chinese and Japanese? Both languages have verbal question marks. All I had to do was pay attention to the end – and if I heard a “ma” or a “ka”, ask for a repeat. Preferably, a written repeat.

Cross off “nerd girl” – let’s just call it “deaf girl”

And a swift little finale for all you cat-lovers out there:

Know of any other ones? Share! 

 

 

Evelyn Glennie, the lead percussionist in the London Olympics opening ceremony, is deaf – she lost most of her hearing when she was 12. I had stumbled across her years ago and of course, loved her in an instant.

Evelyn Glennie is, in a nutshell,  a thinking bad-ass parcel of Scottish coolness who shimmers talent.

About the thinking part. If you have a moment – more like half an hour – watch this, because it’s worth it:

(ironically, no captions – so what I did was pull down the transcript – button under the video, far right, and read as she speaks)

There are so many things you want to talk about in response to this, right?

Like resistance and the more rigid you are, the more disconnected you will become – the looser you allow yourself, the more freely you let yourself flow, the more connected and at one with the drum (- or life) you will be.

Want to talk about an obvious thing too – she speaks so clearly!

She is deaf!

For those of you parents of kids who are d/Deaf reading this, you should know that it is completely possible to speak very clearly and be d/Deaf. If at some point you could hear sounds – when you were little, developing, especially – you also could have learned how to enunciate in the hearing way. I myself have near-perfect enunciation. Just no cool lilting accent like Evelyn…

Then moving back to the content of what she is saying, beyond the surface of her words, you want to talk about this concept she’s trying to explain of listening. Listening, rather than hearing.

Hearing – literally, sound gathering. Listening – processing and interpreting sound. But I think it’s more than that. It’s also a full-body affair – it’s watching, it’s making sense of what you see. It’s allowing yourself to feel freely, opening your body up to receiving sound in all the myriad of forms it is delivered.

Tools may be necessary – as she talks about – and look – watch this

Do you see the mat she’s standing on? And she’s barefoot? Those are her tools – her disability accommodations, so to speak.

And this one – I really liked this one – watch her go!

It pains me, you know, when we continuously have these discussions on disability/access, as if opening up the stage for all players is some kind of noteworthy deed. We as a society are still caught up in this narrow world view on what it means to be human, what it means to contribute. Terribly stuck on old definitions of “hearing”, “seeing”, “walking” and “talking”.

This is what we need: to open ourselves up, free ourselves. Relax into possibility, lose the tension and quit holding the damn drumsticks so tightly that we can never really learn to play.

 

Although I’ve had a disability since I was 4 years old (that we know of anyway), I was mainstreamed at all times. In my family, “disability” was something reserved for people who used wheelchairs. The answer to any disability-related issue I may have had growing up was invariably:

  • try a little harder
  • God only gives you what you can handle
  • suffering is good! “with fire we test the gold!”

Saying I tried to “pass” and fit in among the non-deaf, non-disabled is like saying the Pope is Catholic. Yeah, well, duh. I bent over backwards and twisted myself into loops to try and pass! I happily applied  hairspray into a firm helmet of lacquer to keep my hair from flying back and revealing my dastardly, huge medically-unsexy-looking hearing aids. HEARING AIDS! Who wears the suckers when they are FIFTEEN YEARS OLD?! Who has their perfectly-hearing grandparents cutting out coupons for hearing-ware for them?!

The only people who were lower than me on the totem of uncool were people with developmental disabilities. I wouldn’t come within 10 feet of  someone with a developmental disability. It’s the curse of those of us that desperately want to be “normal” in that sometimes we can be the most cruel. Or sometimes we want so badly to fit in that we shun anyone that might might expose us to be who we actually are: different.

****

After I started working at UC Berkeley and met fierce people within the community who had a disability, I started to realize that my fear of being labeled “deaf” or “disabled” had a lot to do with this perception that I had of “disability” and “deaf” equating helplessness, incapability – and perhaps even stupidity. Uncool, for sure, uncool.

Meeting people that I found inexpressibly hip, savvy, adept – who had a disability – was huge for me. I met tens, hundreds of people at UC Berkeley and in the San Francisco Bay Area that I oozed respect for. Capable, smart, funny people. People who did something with their lives, people who were often good looking, well dressed. Disabled.

Liane Yasumoto’s Superfest pushed me farther by exposing me to people with disabilities high on the artistry level. Producing movies and art that I deeply appreciated.

Sue Schweik’s Disability Studies course, my mentor Sarah Dunham and her book recommendations – the reading that I did – the Oral History Project – all of these pieces swirled for me before laying into a new and complete picture of disability that looked nothing like what I once thought it to be. This new look – the new picture – was full of opportunity. It had pride. Beauty. Humour and grace.

Was not, is not about sorry, sad and tired cliches.

****

But then. I was told my daughter would be coming with Down syndrome – a developmental disability!

My world crumbled, yes, and all the self-acceptance, pride, and love for disability was stripped clean off me, reverting me to my terribly insecure 15 year old self. Every injustice, every hurt, every wrong I’d ever suffered in my life came back and reverberated in my soul, in my marrow for the remaining 6 months of my pregnancy.

I was that kid they hit because she was scar faced and deaf; my daughter would know that pain. I was that girl scorned because she was different; my daughter would know that feeling. I was the girl who hurt so bad she’d get nosebleeds from crying because she didn’t, couldn’t fit in; my daughter would know that feeling.

People talk a lot about ‘right to life’ in the Down syndrome community. It’s not that I don’t believe in a right to life; it’s that I have walked the walk of disability, you see. I know first hand how hard it can be. To choose to keep my daughter, while knowing full well how difficult her life might be was without question the most agonizing decision of my life. Like all parents, I wanted to know that I was doing everything that I could to give my child a life better than what I had, and I wasn’t sure I was doing that by letting her live.

Ultimately, what saved us all was coming to an understanding that her life is hers. It is not mine. As Gibran says:

Your children are not your children.
They are the sons and daughters of Life’s longing for itself.
They come through you but not from you,
And though they are with you yet they belong not to you.

You may give them your love but not your thoughts,
For they have their own thoughts.
You may house their bodies but not their souls,
For their souls dwell in the house of tomorrow…

Moxie has a disability; how her life unfolds will be different from mine. Different by virtue of the fact that we are different people, different because I have walked this path and am more aware than my mother could ever have been with me. Different because she’s Moxie – and she has it, too.

***

For the post on my experience with Down syndrome before Moxie came: Down syndrome Angels?! HELL’S Angels!

Full text from Kahlil Gibran’s ‘On Children’

Your children are not your children.
They are the sons and daughters of Life’s longing for itself.
They come through you but not from you,
And though they are with you yet they belong not to you.

You may give them your love but not your thoughts,
For they have their own thoughts.
You may house their bodies but not their souls,
For their souls dwell in the house of tomorrow,
which you cannot visit, not even in your dreams.
You may strive to be like them,
but seek not to make them like you.
For life goes not backward nor tarries with yesterday.

You are the bows from which your children
as living arrows are sent forth.
The archer sees the mark upon the path of the infinite,
and He bends you with His might
that His arrows may go swift and far.
Let your bending in the archer’s hand be for gladness;
For even as He loves the arrow that flies,
so He loves also the bow that is stable.

 

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