Being deaf

Author note: My relationship with deafness has become more nuanced. However, I’m keeping this post for posterity. These feelings were real, regardless of the beliefs. I encourage you to research more about society’s place in perpetuating ableism, and how disabled people themselves, like I once did, participate in internalized ableism.

At 21, I’m the youngest employee at 1000memories, the startup where I work¹. I’m also their first deaf employee. At a startup, I likely always will be the first. For a startup to succeed, the team must communicate well together. Since I can’t hear, that presents a large challenge for my employers.

On top of that, there are certain things about being deaf that people have never considered, understate, or are mistaken about — so I must clear up exactly what being deaf means. Not understanding what it means risks my productivity and personal happiness. Being a programmer is my current profession, so there will be concrete examples about how being deaf affects me professionally as well as personally.

Solitude

I’ve been with 1000memories for almost a year, and I leave in two weeks to attend Hacker School. I still feel lonely sometimes. If your reflex is “everyone feels lonely sometimes,” you would be right. But you would also be understating the loneliness we feel.

Deafness means I don’t understand anyone. When someone talks at lunch, I want to know what they say. I miss out on the daily conversation, the back-and-forth, the friendships made after propinquity. And the worst part is that I don’t have a choice in the matter.

Five years ago, I received a cochlear implant: a tiny technological machine implanted into my cochlea that fires electric bursts to help me hear. I had to learn sound all over again. I almost didn’t qualify for the cochlear implant operation because, even at 16, I was considered too old. Teaching a child language gets exponentially harder as they grow. It’s the same with hearing. I still can’t tell the difference between “b” and “g,” among many others. I might never, but there’s no point not trying.

In the past few months, I’ve felt like I’m the last person to know about things. I’m constantly surprised when something happened or changed. Once, an engineer left to work from Seattle the same week the two other engineers on the team left to present at RailsConf 2012. When I discovered that I would be the only engineer in the office the entire week, it was after everyone else had all gone.

It seems like a solution is just to ask more questions. I knew the engineer who was presenting at RailsConf Wednesday, but maybe I should have asked who else was going and how long he’d be gone? Maybe. I need to work on getting these questions to occur to me. It’s hard when I still don’t know these people very well, and haven’t learned the social norms because I’ve never heard them.

Another solution is to somehow know what everyone else is doing. The engineers use Google docs to store priorities and to-do lists. We started using Yammer to keep the team up-to-date. That one isn’t working too well — we get an email about every two weeks by a cofounder to use Yammer more. But the idea is to keep everyone up-to-date. Basically, company-wide toilet tweeting.

Group conversations

In an open office like this, it’s very easy to drop in on a conversation and add something. But without understanding what people say, the chance you can do that drops to zero. This is especially problematic in company meetings. The only way I can participate is with access services.

1000memories is still a startup, so we can’t afford full-time access services. But for our most important meetings, the cofounders went through considerable expense to get me transcribers. With them, meetings are a bit better.

Since we work in an open office, parts of the team often chat with each other, especially at lunch. I always miss out on these talks, which are full of snippets of information no matter how bad the signal-to-noise ratio. This is really taken for granted. Any off-topic comment hints at an entire life to discover.

My best friend, then interning at Causes, kept telling me about random tips he picked up from other programmers because they were always chatting about new tricks they learned. This is how I learned about git log -S.

Have I told anyone about these problems? Have I taught anyone how to communicate with me? Yes to both. The result is no one uses the communication method after the initial novelty. The excuse my coworkers use for not practicing is “I need to practice.” And then they keep on talking to you online rather than real life because it’s easier and more familiar. That’s because we’re human, really.

I should have made it clear that Cued Speech was important to me. Startups are busy as bees, and people have other priorities. And I suspect I taught them too far down the line, because it was two months before I would be gone. Something I’ll take away from this experience.

In a chat with a cofounder, I told him that I felt like I didn’t have friends. I became jealous whenever a coworker talked to another and not me. It felt like a girlfriend talking to another guy. When they laugh and I’m unable to understand why, it feels like a punch in the gut, a giant inside joke I’m not part of. Maybe I should ask to explain the joke, even though most of the humor would be lost, because at least I would know.

I participate in conversations less than the quietest person I’ve met — not by choice, entirely. You should never want to be average — unless you are below average. This is a cry for normalcy, when so many others wish to be abnormal.

Love

Being deaf especially sucks when it comes to love. You can’t ever love someone unless you’ve talked to them. So how do you communicate effectively? Everything I’ve ever thought of is awkward, because none of them are ever normal. Social norms are norms because they are what people expect.

I’ve talked to people “normally.” It’s hard, it’s error-prone, and we have to repeat a lot. That’s never a good recipe for love. It’s hard to have awesome conversations when you have to repeat every other thing you say and are never sure whether the other person understood.

I could try to find a deaf girl. However, I don’t want my kids to have an increased chance of deafness. Even if they come out hearing, we’d need to make sure they’re raised right — who will teach them how to talk? And I don’t identify with Deaf culture, which takes pride in being deaf. I accept that deafness is part of me, but it’s just there. Like the fact I have black hair.²

I could use an online dating site, like OKCupid. However, these are self-selected pools of people. There is a specific audience that goes to each site, and you still have to learn subtle communication skills which I currently lack.

I could do many other things (and am!) — exercise, dress well, maximize exposure. But in the end, I’m deaf. The most important thing is that I find someone who communicates well with me.

Job interviews

Let me tell you a story in the present tense.

This morning, I get my fifth or seventh email from a large company in Washington. The second recruiter’s trying to clarify some things, and she tells me that she’ll be looking for an interrupter [sic] for my over-the-phone interview.

I ask to clarify this point. Since I’m deaf, having an interpreter for a phone interview wouldn’t be very useful since the interpreter would be in Washington and I’m not, right? Would they actually be hiring an interpreter in San Francisco? How was this going to work?

In her next email, the recruiter delegates me to her manager, the third recruiter. At the end of the email is a copy-pasted message to be sure to fill out the necessary application for the interview. All interns have seen this application. I do not want to fill it out if they botch the interpreter.

Her manager tells me that she’ll contact my college for access services and that we’ll be using Live Meeting for the interview. She’ll even do a test with me.

Unfortunately I have no idea what Live Meeting is. A quick search on Google tells me Live Meeting is basically Skype, but with no clues on how to download it.

I end up never starting the interview.

Accessibility in interview applications

For most company interview applications, they ask for a phone number without alternatives. I put a random note where I can. Something like “Since I’m deaf, I can’t do a phone interview, but you can reach me at…” at the end of the “Why do you want to work for us?” question. I never hear back from these. I don’t know if it’s whether they never saw my note, whether they rejected my resume silently, or whether they attempted calling my phone number (which doesn’t take calls).

Last time I applied, even Google didn’t provide alternatives. It was a beta application, though when I emailed a recruiter in charge of my college about it, she was very helpful and understanding.

HR is behind the times. There is no reason interviewing over the phone is better than interviewing on video with typewith.me, Skype, or Gmail chat. I’ve done all of these, and it’s always turned out that the programmers preferred to conduct those interviews this way.

Screencasts, talks, and video tutorials When I was trying to learn Rails, I soon found out that a large chunk of popular tutorials were uncaptioned screencasts or videos — a huge body of knowledge I’m unable to tap into. Even Khan Academy went uncaptioned until recently when an independent group helped out. So many uncaptioned videos exist because minorities are not prioritized.

Since I can’t listen to talks, I have to make-do with slides. Slides almost never go into the depth a talk does: it’s all surface knowledge.

In the end, I learned programming by a combination of getting lucky, enrolling in formal classes, poring over books, Googling, finding Stack Overflow, and making things, making things, making things.

Access services

There are three layers involved in translation: the messenger herself, the interpreter, and me. I hear what someone says through the lens of someone who probably doesn’t know programming.

As university subjects get harder, access services get worse. In Probability class a year ago, we learned about second derivatives and gamma probability functions, and the typist that my college hired for this class was typing a transcription indistinguishable from a novel written by a chimpanzee. Typists are not required to learn the prerequisites, nor do they have to learn along with the student. They just type what they think they hear.

It’s like playing a game of Telephone — the classic example of lossy communication. Which means it is never, ever as good.

The only good access service I’ve ever gotten is Cued Speech. In a basic sense, Cued Speech is a system that uses signs for sound. It was invented to battle the spectacularly low deaf literacy rate. (The average reading level of deaf 17- and 18-year-olds is at the fourth grade level.³) With Cued Speech, I see exactly what the messenger says, without ambiguity. The only error arises when the transliterator mishears the person. Unfortunately, in college, I’m not offered Cued Speech due to politics not worth mentioning, and Cued Speech is not widespread.

Deaf culture

I never considered myself part of Deaf culture. It arose because, I suspect, we were lonely. It’s the same for any minority. Except this time, Deaf culture came together because of a common language everyone could understand — American Sign Language. I’ve heard the stories. Deaf people entering college for the first time. Finding other deaf students. Suddenly, during their first sleepless night, they’re making up for all the conversations they had missed.

Some become angry at the hearing world. They went so long without feeling like they belonged. Without feeling loved.

Some don’t think deafness is a disability; it’s just a way of life. After all, we can do anything except hear. But I don’t want to be part of the Deaf world, which seems so cloistered sometimes. I want to be part of the larger world — and out here, not being able to hear is a pretty significant disadvantage.

Friends

Despite the constant communication barriers, I’ve really grown into a good programmer during my time at 1000memories. I’ve learned how to communicate with others, what the real world is like, how to do behavior-driven development, mastered JavaScript, and even submitted a patch for Ruby on Rails. They gave me a chance prove myself as a programmer — and, in these past few months, a friend.⁴

Nine months had passed since my inception as a bumbling intern before I admitted to a cofounder that I was feeling lonely. It happened after one social bowling night, when a scheduling mistake caused us to wait in the alley for an hour and a half chatting in a noisy environment. I stood off to the side, feeling stupid, watching my coworkers laugh. I didn’t want to see that. As soon as I collapsed back in my apartment, I cried. Then a little thought went off in my head: Shouldn’t someone know about this? So I wrote an email.

The next morning the cofounder read my email. He invited me for a chat over breakfast. When he let me into his apartment, I was surprised and a little guilty when I saw his eyes. That moment was the most vulnerable I ever saw him. Of course, you idiot, I thought right then. Founders get lonely, too.

We had bagels at his couch. It took a long time before either of us started talking. I began with what my life used to be three years ago, when I was a completely different person. I was so passive and shy I couldn’t look anyone in the eye. I blamed everything. I depended on everyone. I was content to live life as a cog in an industrial machine. I just wanted an easy life and die of old age. Until I went to college.

In college, I was depressed and bored. I felt like I was missing something. Then someone I knew died. And another. I realized I wasn’t missing anything. Happiness is a verb. And now, the me of three years ago wouldn’t be able to recognize who I am.

The cofounder and I went through what we could do to make my life at work better. Part of my contract involved a budget for speech therapy, something I never took advantage of. I brought up teaching Cued Speech. He mentioned that, at lunch, I could nudge someone and ask what we were talking about. We talked about going back to college, living in the adult world, and finding love.

I walked away feeling like we could be friends.

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