Tuesday, January 7, 2020

Representation Skeptic: The American Girl Edition

American Girl inspired star wall decoration.
Julia's old bedroom has about twenty of these stars which
were traced on the wall (by me) and filled in by shaky hand.
I've since acquired much better painting skills, but this room
will stay AG pink for a long time owing to how much trouble
these stupid stars gave me.
American Girl dolls had a few years of being the thing in our house. Julia started at a very young age with my own original Pleasant Company (before it was owned by Mattel) Molly McIntyre doll. I'd never figured out what to do with poor Molly. She was a gift from my aunt when I was 11 and on the cusp of being what I thought was too old for dolls. Molly spent about sixteen years in her box with her extra outfit and its matching green hair ribbons carefully packed in their original Pleasant Company garment bag.

Julia took possession of Molly when she was four-years-old. The old doll didn't take much abuse before her hair formed itself into a wiry mess. Molly was eventually sent away for a head replacement that resulted in a completely new doll because what came back in a hospital gown was not remotely the Molly we sent away.

Even after 2011 Girl of the Year Kanani  Akina joined our family, Molly was still preferred. When we found out AG dolls could have hearing aids, it was Molly that had the honor.

Molly's hot pink hearing aids went in and owing to their mode of attachment (a sort of piercing right in the canal), never came out. Julia's bedroom was painted bright pink with AG stars. Pap Pap made two sets of doll bunk beds and a little table and chairs. Santa's elves constructed a homemade gymnastics set because gosh, that "authentic" stuff is expensive. American Girls took over a big portion of the playroom before moving into a corner of the bedroom and finally going to rest once again in their boxes. Even if Molly never sees daylight again, this time she rests knowing that she's lived!

I tried to unsubscribe from the American Girl catalog last year and maybe I was successful because I only learned of the 2020 Doll of the Year, Joss Kendrick, in my news feed. Profoundly deaf in one ear with significant hearing loss in the other, Joss wears one hearing aid and enjoys surfing. 


The press release momentarily made me think that this doll, Joss, should join the others in the closet. It's groundbreaking representation! It's a doll almost sorta just like Julia!

Julia is 14 now and when we talked about Joss, our conversation was deeper than just acknowledging that the time for American Girl dolls has passed. It was an opportunity to talk about our skepticism and recurring disappointment at the representation of kids and adults that are deaf or hard of hearing.

We were reminded that there was a time when it was enough just to see someone with hearing aids. We were thrilled to see a little boy with hearing aids in Spy Kids 4. He was actually wearing a cochlear implant processor and hearing aids don't really give a person super spy hearing, but he was there onscreen. It was enough.

We punched bright pink plastic hearing aids into Molly's ears. We couldn't take the hearing aids out ever because then she'd have weird holes drilled right in the middle of her ears, but she could have hearing aids. It was enough.

But we got older. Our family looked for more media portrayals of people with hearing loss. Julia learned that Hawkeye (the Marvel Comics hero played by Jeremy Renner) was Deaf in the comic books. Deadpool, that horrible, foul-mouthed, red-suited, anti-hero, signs and lifts his mask so Hawkeye can read his lips in the comic books. None of this made it into the movies, much like Auggie Pullman's hearing aid was left out of the Wonder film.

We watched A Quiet Place and puzzled over why the cochlear implant was squealing like a hearing aid. If the feedback was a plot point, why not give the character hearing aids instead of cochlear implants?

Wonderstruck turned deafness into a weird, jaunty silent film.

Even General Amaya in The Dragon Prince using really well-done ASL made us wonder how she knows what's going on when people aren't signing or even facing her. Sometimes the speaker is behind her and she still responds as though she heard everything. We spent several episodes debating whether she was Deaf or possibly mute.

American Sign Language is having a moment, so much so that the Mandolorian can sign well enough to negotiate passage across a random Star Wars planet. This is worlds better than just a short time ago when tv shows used fake sign language and hearing aids that acted like supersonic listening instruments, but there's still work to be done in the details.

Joss Kendrick, the 2020 American Girl Doll of the Year, was developed with the input of "Gallaudet University’s Dr. Sharon Pajka, who specializes in portrayals of deaf characters in adolescent literature, and several other experts in surfing, competitive cheerleading, and hearing loss." (citation) I'm hopeful that Joss is more than just a doll with a hearing aid. Someday when I read her story, I hope to be impressed and maybe even learn how she keeps the sand out her hearing aid when she's on the beach.

Wednesday, May 22, 2019

New Hearing Aids and Altered Ear Canals

Julia stopped using FM in sixth grade.

Of course, I never thought I'd have one of those kids. My kid would always use all available technology. My kid would follow the rules

The rules surrounding FM* in middle school were complex. Julia had to take the transmitter to each teacher and follow a schedule of channel changes to be sure her transmitter wasn't interfering with the others in the building. All this for a benefit that she didn't especially appreciate. The system became burdensome and annoying. We decided that she could go without the FM if she maintained her grades.

We didn't even notice a blip in academic performance and so by the time her Phonak Sky hearing aids were due to be replaced in the summer of 2018, compatibility with the school's Roger transmitter wasn't an issue. We were free to explore other options, other brands, and even a different style of hearing aid.

Since being diagnosed at age three, Julia always wore Phonak behind the ear (BTE) hearing aids. BTE hearing aids are robust enough for the demands of somersaulting kids. They're also heavy compared to the other minuscule devices now on the market. Since Phonak wasn't offering iPhone connectivity, Julia chose Oticon OPN receiver in canal hearing aids.

And another adventure began.

The Oticon aids were magnificent at first. Julia streamed music from her iPhone during just about all of her waking hours. The batteries (now size 312 rather than the bigger ones we'd been used to) lasted about three days. She was happy though and really enjoying a typical teenagery phase of ignoring the world in favor of whatever the kids are listening to these days.

A couple of months into the Oticon experience, she started having ear and jaw pain. It got so bad that Julia couldn't wear her hearing aids for the whole day. She'd have to take one or the other out to relieve the pain. We consulted with the audiologist, gave the orthodontist a thorough talking to, and settled on new ear mold impressions. 

The new impressions were significantly different and pain-free. Since most kids don't have close monitoring on the shape of their ear canal, no one knew that orthodontic bite adjustment could cause such changes. 

Christmas 2018 was pain-free, but the right Oticon hearing aid was not working. We replaced the receiver because we were told that the thin wire and somewhat moisture sensitive part in the ear canal can go bad. We sent the right hearing aid in for service and received a brand new replacement. We sent both hearing aids in for service and received brand new replacements. The problem was only ever with the right hearing aid which would periodically get very quiet or sometimes mute completely. Eventually, we found that changing the tiny wax guard on the end of the receiver would fix the problem. Julia was having to change the wax guard on the right hearing aid every day.

Frustration peaked about the time we sent both the left and right hearing aids in for service. The thought was at that time that the two aids weren't communicating with each other. Perhaps the left one was muting the right one? We were pretty much at wit's end. Julia doesn't like having to mess with her hearing aids. She puts them in, they work, she lives life. This constant futzing was not at all acceptable. She was having to wear her Phonak hearing aids while the Oticon ones were being repaired and was ready just to go back to the old aids even if they were pretty worn. At least she just put them in and they still worked. Reliability is more important than music streaming.

It was an anxious time in which my husband and I considered the possibility that receiver in canal hearing aids just didn't work for her and we'd really screwed up. We were outside of the trial period and wouldn't be able to get new hearing aids for three to five years. Stress levels were high.

Eventually, I took the two hearing aids and compared them to each other. There must be some reason this only ever happened to the right side. It was then that I noticed a difference in the position of the receiver in the custom ear mold. On the left side, the receiver sat back in, but on the right, the receiver was right at the edge. Perhaps the receiver was getting jammed into Julia's ear canal and somehow squishing the wax guard in a way that made the hearing aid sound quiet or mute completely.

A side by side comparison showing both the change in ear canal shape and the
problematic position of the receiver in the middle ear mold. It's not good to have it
hanging out of the end like that!

I got them in reverse order in the picture, but the most curved canal on the
minty colored mold is from an impression taken in August 2018. The blue
one is just a few months after and the clear mold is from March 2019. The
orthodontist is straightening her teeth and her ear canals.

We returned to the audiologist and by March had comfortable ear molds with a recessed cavity for the receiver that didn't cause it to mute the whole hearing aid. Just like that, the Oticon OPN hearing aids were wonderful again. Music streams. Volume adjusts with an iPhone app. Wax guards only need to be changed every six weeks or so. All is well.

We must have stumbled onto a bunch of circumstances that were previously unknown or just don't impact that many kids. It complicates diagnosing issues that Oticon just sends new hearing aids with no diagnostic report. Apparently, they're too small to really do any actual repairs and so they don't tell you if there's a software problem or user error or moisture damage. The lack of useful communication wouldn't have been an issue if the Oticon service had fixed the problem, but since we were still in the same place after multiple "repairs," it was an added frustration.

Ear mold drama aside, she loves the size and sound quality of the new hearing aids. She put the Phonak hearing aids in for a little while recently and said that the world sounded "sad." It seems like the Oticon aids have a better strategy for reducing background noise, but that's just something I've pieced together from Julia's occasional reports. Now they just work, and for that, we're very grateful.




*FM is now an outdated term because technology has changed and it's no longer accurate. The microphone a teacher wears to transmit sound directly to a student's hearing aid is now called a HAT (hearing assistive technology). This serves a dual purpose of being technically accurate and making me feel old.

Tuesday, February 12, 2019

Watching It Burn - An Adventure in Theater Accommodations

At the beginning of November, I happened upon a news story about the traveling Broadway production of Hamilton making its way to nearby Pittsburgh. 

Huh, I thought. I’d really like to see that. 

Even after research revealed staggering ticket prices, I still felt like I wanted to go to there. That’s really saying something. 

We embarked on a three-month journey that began with an online waiting room with a randomly assigned number in a vast queue (at one point it said there were hundreds of thousands of hopeful theatergoers, our number was 837) and ended with our minds blown at the January 27th matinee. 

The show was at Pittsburgh’s Benedum Theater and in the days leading up to the ticket release, I researched their captioned performances. Each run concludes with one closed captioned and ASL interpreted performance during the matinee on the last day of the show. I sort of knew this because our cued speech instructor was gearing up to interpret Mary Poppins while she was giving us lessons. She told us how she was trying to decide whether to fingerspell supercalifragelisticksexpialidocious or just print it on a sign to hold up at the appropriate time. I never did find out what she did. 

The Benedum is a beautiful venue. We arrived WAY early for our show,
but the theater is so interesting we were quite entertained by staring at the ceiling.


At any rate, trustarts.org confirmed that the very last show would have captions and interpreters. A positivity campaign to shift our feelings from angst about waiting so long to see Hamilton to healthy anticipation that made the winter pass pleasantly was quite successful. We secured our tickets and started listening to the official original Broadway cast soundtrack. 

Note: in the days before the show, I went back to the website to figure out where to get the captioning device. They’d added two additional captioned/interpreted shows! We really didn’t have to wait until the end of January although I don’t know how I’d have figure out which extra shows had accommodations. But I do know that the devices are picked up from guest services and you have to leave a photo ID to check one out. 


The Hamilton soundtrack is addictive. Within a few weeks, we were memorizing lyrics. I finished the Ron Chernow biography just after Christmas. We watched every YouTube Hamildrop and even several episodes of Drunk History. By showtime, I could *almost* sing/rap Angelica’s part in Satisfied. We were three people prepped and ready for historical hip hop. 

Our morning went according to plan and by 12:30 we were in our seats, captioning device in hand. Benedum guest services advised leaving the unit powered off until Hamilton started since it wouldn’t start displaying until showtime. At about 12:58, Julia turned the device on. It displayed two rows of rectangles, each a full-color advertisement for an upcoming show. All-caps captions appeared a sentence or two into King George’s introduction to the show. And then I was swept away to “a forgotten spot in the Caribbean” and was only peripherally aware of the problems that ensued. 

That home screen flashed on a few times and then there was a smell, but I didn’t connect the plasticky odor of impending electrical fire to the captioning device. In fact, I thought the burning smell was some sort of stage effect though I couldn’t figure out which one. (This was well before Eliza burned everything and I didn’t smell that fire anyway.) I scoped out the emergency exits just in case. 

Julia was relieved to make it to the intermission. “This is really hot,” she said. She meant the device, but the show was pretty hot too. 

Not wanting to bother us, Julia tried powering the captioning device off and back on when it stopped working. It was going in and out of service. She turned it off for good when it started to heat up. I sniffed the plastic case and confirmed the source of that smell. Julia elected to go through the second act without a captioning device. 

The Benedum guest service lady was very apologetic and set the device aside for service or perhaps the garbage. We learned that these handheld devices are on their way out anyway. Broadway (the "real" one in NYC) is using the GalaPro app which allows theatergoers to use their own phone to access captions. As this technology makes its way across the country, there will be no need for special captioned shows because the app will work at every performance. GalaPro will silence phones and allow adjustments to brightness to keep the screen from emitting its distracting light. As an added bonus, one's own phone is unlikely to spontaneously combust. I hope.

In summary, we now have a plan in place for instances when one person needs to quietly notify the rest of the family that some hunk of junk is about to explode. And we know that preparation for live theater is key. With enough at home singalongs, the technology is optional but we do look forward to giving the new app-based captions a go.

Tuesday, December 11, 2018

Fighting the Craptions

Our family has been consuming captions for almost ten years now. I've written about it before, and I'm happy to report that things are getting better in the world of captions. Netflix is doing pretty well on the captioning front. We even have a semi-local movie theater that has open captioned showings of new releases. It's far and away better than the tricky three-line digital receiver box jammed into the theater seat cup holder.

Still, bad captions exist. They're called "craptions" which is a little too cute for as annoying as they are. Activists are working hard to educate content creators about how and why they should create accurate captions for every video. There's even a #nomorecraptions campaign.

You can buy t-shirts and hoodies to show your support for the 
#NoMoreCraptions campaign and to bring captions to YouTube!
"I would buy this" to be notified of the campaign's next print run.

YouTube


On the spectrum of bad captions, YouTube is a major offender. If you upload a video without captions, YouTube will auto-generate captions. Here's what YouTube says about "automatic captioning:"

Captions are a great way to make content accessible for viewers. YouTube can use speech recognition technology to automatically create captions for your videos. These automatic captions are generated by machine learning algorithms, so the quality of the captions may vary. 
(https://support.google.com/youtube/answer/6373554?hl=en)

By "the quality of the captions may vary," they mean that sometimes the auto-captions are great. Other times they're laughably incorrect. Sometimes they print dirty words on the screen that are nothing close to what was said in the audio. In short, you might not want to turn these on at all until you're ready for your sweet child to learn four-letter words.

YouTube content creators can edit the auto-generated captions to correct these errors if they take some time to review the captions on each video. They can also use Rev to have professional captions generated by real human beings. The YouTubers just need to commit to better captions. That's what the #nomorecaptions awareness campaign above is hoping to achieve. 

Network TV


Big networks are still struggling to provide quality captions everywhere. We watch late night comedy on YouTube using each show's channel. The captions work well enough on YouTube. We watch SNL using the NBC app on Roku and those captions are very inaccurate. They paraphrase and just plain get it wrong sometimes.

Commercials are mostly uncaptioned across all platforms.

Fight the Craptions


The #nomorecraptions campaign suggests sending an email or leaving a comment on YouTube channels that don't provide accurate captions. They note that you should expect to be told to turn on the auto-generated captions owing to the fact that said YouTuber has never looked at the auto-generated captions. 

The FCC provides a complaint mechanism for inadequate captioning. 

NCI (http://www.ncicap.org/viewer-resources/viewer-faq/#C11) provides the following advice about filing a complaint:

The Federal Communications Commission (FCC) has issued rules about closed captioning, and they have established a complaint process. Before you proceed, be sure your own equipment is in good working order.
You should first complain in writing to your programming distributor (i.e., your cable or satellite TV service, or the TV station if you do not pay for cable, satellite, or another subscription video service). If you are paying for cable or satellite television service, your provider is responsible for resolving any captioning problems even if the problems might be in the program feed they are receiving. Check your provider’s Website about who to contact regarding captioning problems or look up the contact using this Website. Complaints that are polite and specific with complete details are the most effective.
Keep a record of your complaint. If the problem is not resolved, then you can file a complaint with the FCC. There are a number of rules for filing complaints, so you should read and follow them to be sure your complaint will be considered. Your complaint has to be very specific (date, time, stations affected, etc.). Click on this link to see the FCC’s closed captioning guide, which includes information about filing closed captioning complaints. NOTE: The National Association of the Deaf (NAD) suggests that you submit your complaint to the FCC at the same time as you notify your service provider so that the FCC gets a better understanding of the types of problems people are having with captioning.
Here's a direct link to the FCC caption complaint center: https://consumercomplaints.fcc.gov/hc/en-us/requests/new?ticket_form_id=36040

Awareness of the need for accurate captioning is growing. Don't accept the craptions!

Wednesday, September 19, 2018

A&E Documentary: Deaf Out Loud

***spoiler alert: watch the Deaf Out Loud documentary first, spoilers follow!***

I found out about the September 12th premiere of A&E's program Born This Way Presents Deaf Out Loud a few weeks in advance. I looked it up and was pretty excited to watch. The promos made it look like a program that was going to showcase all of the ways to be deaf (or Deaf).

It was difficult for us to lay eyes on the show. We unplugged from cable a while back and unlike that DirecTV commercial that plays every time I watch a YouTube video, we didn't replace it with any paid service. It took almost a week to figure out a way to access the show and when we did, it didn't have closed captions. I'm sure the version that aired on A&E had captions. I suppose we'll never know for sure.

Perhaps it was foredoomed to fail already at that point, but it got worse. The documentary opens by showing a Deaf couple at a shooting range. This was meant, I think, to show the couple's enjoyment of an activity in a way that is different from the way hearing people would experience it. I just don't like seeing people shoot guns on TV. In post-Parkland America, gleefully shooting your Glock falls in the same category as smoking a joint. You can do it, in many states it's even legal, but it's not an endearing activity for a TV show. Or an Elon Musk podcast.

This was the first in a series of stylistic choices that detract from the story.

Our family is finally making great strides in learning ASL. Watching Deaf Out Loud was, I thought, an opportunity for us to see native signers. It's not like we hoped to learn new vocabulary from the show. It simply presented an opportunity to experience a bunch of different people signing. We usually are able to pick out words and phrases we know. It helps our receptive skills.

Deaf Out Loud did this odd camera angle while most of the people were signing. It was a tilted, swoopy thing that cut the head out of the shot and zoomed in on the hands. It made the signs unintelligible, at least to my almost wholly untrained eye. A straight-on camera shot would have been much better. I felt like the program had an undercurrent of this opinion that the hands are the only thing that's important in ASL. Those facial expressions that your ASL instructor insists contribute so much to the meaning? Deaf Out Loud didn't need to show those.

Finally, the documentary fell short in delivering on its main promise to show that there's no one right way to be Deaf/deaf. Two of the three families came off as very defensive of their choices because the documentary didn't provide enough context on the most contentious and controversial topics.

One of the dads had cochlear implant surgery but reports discontinuing the use of his CI due to social stigma. Other documentary participants pointed out the shortcomings of cochlear implants, but this dad was presented as a man that ditched his device because people in the grocery store made comments about it. Surely there's more to it. Cochlear implants are not a miracle cure for everyone. Was there some element of that in his story?

The same truncated storytelling took down the story of another Deaf Out Loud documentary dad. He reports turning off his voice in college to communicate exclusively in ASL. This came across with an air of I-used-to-speak-but-I-don't-anymore-nanana-boo-boo. Surely there's more to it. Other documentary participants made reference to the trauma of intense speech therapy for kids that aren't advancing with speech goals. This was an opportunity for the message to be delivered from a personal experience, but instead, it looked like an instance of extreme tribalism.

My daughter turned from the TV about halfway through and announced, "I don't like this at all." Though my reaction wasn't that extreme, I was very disappointed. I identified with only one of the families. Their commitment to do whatever worked for each individual child was inspirational. The documentary showed their willingness to change course and give each of their six kids what they need to succeed. That should be the message of parenting whether a child is hearing, Deaf, or anything in between.

Thursday, July 19, 2018

Friday, May 4, 2018

Cinematic Experience with Open Captions

Periodic announcements make their way to us with a schedule of "open captioned" movies at a Pittsburgh-area theater, the AMC Waterfront 22. The Waterfront isn't very close to our home, nor is it a place we enjoy spending time. And the movie offerings haven't been too alluring. We don't partake of the cinema very often due to other people and lack of captions. (Closed caption devices tend to ruin the movie.)

Then came an announcement for Avengers: Infinity War with open captions.

After taking in every Marvel movie (with the exception of Black Panther, still working on that one), I figured the new Avengers movie was a film worth seeing in the theater, even if it meant a 45-minute drive early-ish on a Saturday morning. 

The open captioned show times do not occur midday.

Infinity War has not been on my radar. Honestly, the superhero thing has been wearing itself out. Ever since Civil War and Ragnarok, they haven't been as exciting. So it was mostly the captions that brought me out of our home theater. At 10am on a Saturday, I figured there wouldn't be many other people. It might have been the perfect outing.

Except that it was opening weekend for a blockbuster film. I still can't believe they open caption on opening weekend. That's pretty cool when you think about it. The theater was remarkably busy, the feature film's captions were perfection and it was, in fact, Avengers: Infinity War was the ultimate superhero crossover event of all time.

There are just a couple of notes I'd like to pass along to the AMC.

  1. It's weird that the captions weren't advertised. I got a flyer from a third party, but there was no indication I could find online or in the building that the showing would be captioned. Don't you think just about everyone would want to know whether they wanted the captions or not?
  2. A captioned feature film should have captioned previews. And captioned commercials. And captioned stupid pre-preview interviews. If you wonder what you should caption, the answer is simple: ALL OF IT. There were portions of the forever long pre-movie garbage that just had an image on the screen with a voice over. How would that be accessible to someone with hearing loss or deafness? Isn't it pretty rude to make only part of something accessible?
Overall, this was one of the best movie theater experiences we've had. If it was up to me, there wouldn't even be an extended period of "front row" screen facetime extra report madness before seventeen previews, but that's the price you pay for seeing a film in the theater. (Other than the price of admission.) But if there has to be a Coke commercial, figure out how to caption it. Then, going to the movies might really be perfect.