Deaf.

It’s a big word for four letters. It implies a lot, most of which is untrue for many people who identify as deaf.

Do I identify as deaf? I’m not sure. For most of my life I have “passed” for hearing. Thanks to speech therapy and a talent for interpolation (piecing together incomplete data with what I expect to be in the holes) I’ve gotten along okay. But as I get older, my residual hearing is fading. As I become active in online social justice communities, I become more aware of the ways in which society is set up to render me and my non-normative needs an annoyance at best, invisible at worst.

It can be difficult to imagine what life is like with a disability. For me, it is difficult to imagine what life would be like if I had normal hearing, but I am perpetually bombarded with reminders and barbs of how I experience the world in a different way, and how that difference is seen as a lack and a burden.

So here’s what it’s like for me to be hard of hearing.

Fading Inward, by Heather Keith Freeman

The Physical
I was born with my hearing impairment. My hearing is about 50% of normal in lower frequencies, getting worse as the frequency gets higher. Get high enough – say up around a piccolo or a cowbell – and it’s completely gone. (Alas. I cannot have more cowbell.)

I also have a very small dynamic range; meaning that the decibel difference between a sound I can hear and a sound that is so loud as to be painful is tiny compared to fully hearing people. The sound of a Harley engine, for example, is painful to me even without my hearing aids on. Which means that even those super-expensive, frequency corrected programmable hearing aids can only pump the volume so much.

If there’s any ambient noise at all, I can’t hear a phone ring. I couldn’t hear the string section in the new Doctor Who theme until it changed from violins to cellos in series 4. I can’t hear the ambient music in public spaces. (Some would say that’s an advantage when it comes to elevator music, but every time someone says “hey, I love this song!” and I didn’t even realize there was music playing…. yeah, that hurts.)

And that’s with my super-expensive, frequency-corrected programmable hearing aids. Which insurance doesn’t cover, by the way.

Understanding Speech
I understand speech by a combination of hearing the vowel sounds (lower frequencies) and lip-reading the consonants (higher frequencies). This means I can’t use a telephone. And no, TTY/relay is not a good solution*. It also means if I meet a person with a strong accent, who looks down or away while talking, or who just doesn’t move their lips much while talking, I can’t understand what they say, at all. And you might be surprised how many people, when asked to slow down or speak more clearly, either ignore the request or get huffy about it.

Captioning
I need to have captions on media in order to understand the speech. Maybe 5% of the time, if the speaker is onscreen and facing the camera the entire time, and the sound and video quality are good, and they follow standard speech patterns such that I can interpolate the data I have with what I expect them to be saying, I can get by without them. But if there are no captions, most of the time I just don’t bother, because I’d rather it not be rubbed in my face yet again that my needs are invisible.

Broadcast news and live shows are out, because the captioning on such shows is so poor. (Jon Stewart, for example, who I adore, has captions that are usually massively out of sync and pretty much unuseable. When I watch that show with my family, we have to pause every few lines so they can relay the good lines.) Netflix or Amazon video on demand – no captions. iTunes – 99% of the content has no captions. The technology to support captions is there, but the content providers aren’t pushing the data through, despite the fact that in most cases the captioning track already exists from when it was broadcast on TV! The new Doctor Who special was just broadcast in Britain, and my fellow fans stateside are of course watching downloaded copies and talking about it endlessly. But none of the downloaded copies have captions. Most stand-up comedy: no captions. Pay-per-view in hotel rooms: no captions.

I’ve given up seeing movies in theaters. Closed captioning systems exist, but they’re only on two screens in my area, and invariably are thrillers or blockbusters that I have no interest in seeing. Kids films are more and more often in 3-D, and captioning never co-exists with the 3-D system, so forget about taking my kid to a movie. The manager of our local theater has been completely unresponsive to any requests for particular movies to have captions. (All of the films come with captioning tracks; it’s up to the theater which film they put on those screens every week.)

Disney just pulled a huge scam by releasing copies of “Up” to rental companies without captioning of any kind. Apparently access for the 36 million deaf and hard of hearing people in this country is considered a “special feature.” To add insult to injury, most of the rental boxes are labeled as captioned.

And the thing is, shit like this happens EVERY. DAY. A few years ago a movie came out about deaf drummer Evelyn Glennie, but was released to theaters WITH NO CAPTIONS, thereby excluding precisely those people who might be the most interested in the film.

Employment
When I was working, it was always a struggle to find ways around using the telephone. I tried using a relay system* – nobody I called understood what was going on, some people didn’t answer because caller ID didn’t pass through, and I couldn’t make long distance calls with it, blocking access to our company’s other locations. I was fortunate enough to work in a high-tech company that supported email and videoconferencing, but the constant assumption that I could just pick up a phone and call was a persistent problem. Had I stayed in that career path, it probably would have interfered with my advancement.

When I was working retail, I had to do some legwork to even find a job where answering the phone was negotiable. The ADA only grants me access to employment when my disability doesn’t interfere with the work, and many entry-level jobs – retail, admin, food service – require some degree of phone work.

Social Life
My social interaction is strongly limited. Despite my lipreading ability, I still depend on the auditory input I do get, so at a party or a restaurant chances are I will understand very little of what is said. If I am driving or in the back seat of a car, ditto. If the person I am speaking to is backlit, ditto. If someone in a library is speaking to me in a whisper, ditto (and I can’t exactly ask them to speak up there!) I have become expert at reading body language to smile and nod and react appropriately in conversations even when I have no idea what it’s even about, just to avoid seeming like a problem or a party pooper. Neighbors seem to have a habit of opening conversations from an adjoining yard or across the street, which I can’t hear and often don’t notice. I wonder how many friendly people in my past have thought me an aloof bitch because I just couldn’t tell they were talking to me?

Activities
If a musician comes through town that I like, I have to weigh the pleasure of hearing her music live against the fact that I will not understand the lyrics, or even most of the between-song banter.

Lectures and seminars, unless they’re *very* small, are right out. I’m usually not going to pay the price of admission and time on the chance that I can get good seating, the lighting is right, the speaker enunciates clearly, and the ambient noise is low enough for me to understand what’s going on.

Any kind of announcement carries with it the heightened risk that I won’t hear it. A restaurant saying my table is ready. An airline calling my row to be seated. An administrator announcing a new rule.

My hearing aids are not waterproof. I also wear glasses. This means I can only go to the pool or the beach in very close proximity with someone who understands my limitations. If a lifeguard were to start shouting at me, for example, I would have no idea, since not only can I not hear, I can’t see well enough without glasses to lipread more than a couple of feet away. It also means I have to leave my expensive and fragile hearing aids in a locker or a bag, with the attendant risk that they will be stolen, gotten wet, or stepped on.

Should I be glad I have even this much?
Many of these things I don’t have access to are privileges to have even in their stunted form – but that’s not the point. The point is that most people do have access to these things, and I am denied them. This is what disability means. Society chooses to present things in a format that allows only the subset of people with particular physical parameters to access them. I could get by with my limited access to media, but every time someone posts a video without a transcript, or a movie comes out that I would love to see in the theater, or hear about a musician in town that I like, it reminds me that I’m a second-class citizen.

I think the advent of accessibility fail on the internet stings even more because for a long time, the net was the one place I *wasn’t* disabled. That’s been the case for a lot of people. Those who have to or prefer to stay at home most of the time, or who have trouble communicating in real time, can have a social life through the net – but the more the net becomes like the “real world”, the more it starts marginalizing disabled people. Again.

What Can You Do?
Some of you may be saying, “well, I’m sorry, that sucks, but what can I do about it?” Here’s what you can do.

If you are in charge of producing media, whether it be a youtube video or a website, give one second’s thought to accessibility. Validate your HTML so that screen readers and accessible browsers can make sense of your code. If captioning a video seems like too much work (and it is a lot of work, I know), what about a text summary? Or asking your viewers to transcribe it? If you’re making an announcement, make sure you’re visible. Provide access to your information in several formats and you will cover more people. Be aware. Think. If you see an accessibility issue, point it out and make other people think. No single accomodation can cover everyone, but being willing to try goes a long, long way.

Above all, LISTEN. If someone says they can’t understand what you’re saying, or can’t do what you’re asking of them, or can’t process the information you’re giving, be open to hearing it and working towards a solution. Everyone deserves the fundamental respect to have their viewpoint heard. If you don’t know anyone with a disability (and chances are you do, even if you don’t realize it), go looking online. There are a lot of us out there, posting and talking and tweeting about the problems created for disabled people by a society that would prefer we didn’t exist. And if you think we’re being overly dramatic, consider how frustrating it is to have to demand over and over again to be treated like a human being, like someone with a viewpoint worth considering.

The Bottom Line
If you make something accessible to deaf and hard of hearing people, you’ve made a difference for up to 36 million people in this country alone. If you make improvements to all forms of accessibility, you’ve made a difference for up to 20% of the world’s population – that’s 2 BILLION people. This stuff matters.

* TTY: a device that transmits text over a phone line. Phone relay: where you call an 800 number with your TTY phone. The operator calls the number you’re trying to get to, and reads what you type to the person on the other end. The problem: many companies that advertise TTY numbers don’t even answer them. And I once had a doctor – a DOCTOR, from whom I was trying to get medical care – interrupt the relay operator while she was explaining what was going on to say he didn’t have time for this.

This post was included in the 60th Disability Blog Carnival at Feminists with Disabilities.