Why I want to talk about what it’s like working with a hidden disability
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A few weeks ago I met with a new doctor for the first time. She asked me for my medical background, did I have any previous history of disease or disability in my family she wanted to know.
I tell her about my hearing loss, that she might not know it, but actually, I'm deaf and might need her to repeat herself from time to time.
"I know," she tells me "I used to work with Deaf students and I could tell as soon as I met you that you were deaf."
My first instinct is to slam the health form clipboard down on her desk and sprint out of the office. My insides seize up and I'm horrified. There's no way she can tell.
I've spent 20 years crafting this reaction, perfecting the ability to masterfully hide a disability from anyone who doesn't know me.
I've spent another three years sitting in a therapist's office learning to undo those years I spent hiding and denying my disability. Sometimes it's hard to let go of instinct.
These are facts: I have a sensorineural, moderately severe hearing impairment. In layman terms, I'm deaf. I communicate by reading lips along with an oddly amusing game of interpretation that often extends far from the reality of a conversation.
I spend the majority of my day in a haze of extreme exhaustion; the kind that comes from having to transform every mouth movement and sound into a semblance of a sentence, and playing a well-choreographed game of "hide your disability". Pretending can be exhausting.
My hearing loss has been a well-guarded secret of mine for a long time. And you probably don't realise it, but there's a chance the person sitting at the desk next to you is also hiding a similar secret.
What I have is a hidden disability. One that falls outside the dominant disability paradigm that most people have come to associate with disability.
Because the limitations of a hidden disability are not immediately obvious, people often assume that the struggles those of us face are not real – that we over exaggerate the extent of our challenges.
My hearing loss is the elephant in the room that has guided and impacted every single decision in my professional life.
I spent much of my teens and early 20s in blissful ignorance. When it came time to seek out a job in an industry that I so desperately wanted to be a part of, I spent a long time anxiously avoiding the reality. I didn't know how I was going to cope in a professional environment with a disability I refused to acknowledge or speak about.
I agonised for a long time about never securing employment in my chosen field because I would be followed by discrimination and judgment – perhaps it was my own.
So it was for this reason that when I interviewed for my first position, I chose not to disclose my hearing impairment.
Once I received the job offer I came to a crossroads. Did I tell the new employer after I signed the contract? Did I tell them before? I fretted that if I disclosed after the fact, I would be deceiving them. My first job was a precious commodity.
So I kept my mouth shut.
Of course it didn't end well. There were a series of unfortunate events that I can now look back on with mild amusement. But at the time, they were traumatising.
I spent a lot of time in the bathroom at work crying because I was so overwhelmed. How could I transcribe a speech when I couldn't even hear the dialogue? Why did my manager have to speak so fast during training sessions? Why couldn't my client write his request in an email instead of mumbling on the phone? Why did everyone snap at me when I asked them to clarify instructions I hadn't quite caught the first time?
I struggled. I earned the title of the "rude new girl" because of the way I ignored people when they said hello to me in the morning. It wasn't really because I was rude. I just never heard them.
The tipping point came the day my manager held a conversation with my back. He was probably giving me some long-winded instructions about something that wasn't all that important. Whatever it was, I missed the entire conversation. By that point, he was on his last nerve with the new girl who was seemingly incapable of following instructions.
I still don't know what his directions were, or what he'd said before. Most of it's a blur. Except for this question:
"What, are you fucking deaf or something?"
He was angry. His question was filled with venom. Here was the root of my problem, drowning in my boss' anger. His question was based on fact, but he didn't know it. To him, this disability was a sign of incompetence.
His question ripped my resolve to shreds. It added another layer to the belief that if an employer knew of my disability, I'd be out the door, or not on the list at all.
My response to him was a huffed out "Yeah, actually" that probably got lost in his anger. I stuck it out and endured a few humiliating months working at the job, until I found another. I decided that this time, I would tell the interviewer.
"I have a sort of hearing problem, but I'll be fine," was how I came to phrase it. Not quite there, but at least they knew. Sort of.
So back in the doctor's office. There's a tense silence that lingers in the air for several minutes.
"Does the fact that I knew you were deaf bother you?" she asks
I think back to a former co-worker from a few jobs ago, one of the few at the time who I trusted enough to confide in about how difficult I found my working environment – with a printer next to my desk and a loud warehouse-style office space. It wasn't a long conversation, just some mutual venting between co-worker friends.
Several months later we talked about the situation again. She thanked me for telling her about my hearing impairment, about what I needed from her in order to make my working day easier. How she was becoming more aware of the way she communicated with the people she worked with, how she was learning to be patient and understanding of the different ways that people operated.
After that, I started to realise how important it is to break down these barriers of disability. To ebb away at the stigma and change the perceptions of people like my former manager, who view a disability as incompetency.
The reality is, I'm not incapable. Yes, there has come a point where I've had to acknowledge that I do certain things differently, or have to sometimes ask for concessions or extra help.
There have been downsides for my career – the small things that no hearing person would give a second thought to. The brainstorming sessions in large groups where I've never quite made it through an entire conversation. Having to apologise to a former manager for "having ears that didn't work properly" when a request for help to accommodate my disability spanned over five months. The feeling of isolation in the office space when conversations are being held and I can't quite keep up.
Since my first job, I've gotten better at letting people know what I need in order to do my job properly. But there are still the hurdles to jump and perceptions to change.
People's attitudes are based around the fact that they just don't know any better. There's a significant lack of education around this issue, because so many people are terrified to speak up.
It's something we all need to talk about, which is why I'm starting now.