‘Coming out’ with a disability
January 31, 2013 1 Comment
I came out to my bosses yesterday: I had to explain to them that I’m deaf. I hadn’t had the opportunity to discuss it before – I didn’t have an interview for the position, and there’s never any time to talk about much else than work. It was a pretty good run, though – I’ve been there for nearly a year now, but not being able to hear, and feeling like I was imminently going to get into trouble or get a reputation for being stupid … I supposed I reached my limit where I just had to say something.
I had to ask one of them something a couple of times, because they were looking the other way, it wasn’t clear they were talking to me, and they were mumbling. They felt like I had not been paying attention or was being absent-minded. Absent-mindedness is not a new accusation or characterisation of my behaviour – it’s very true, but I put that down in part to being deaf. Which made me start to wonder if any of my other personality traits or ‘quirks’ are also down to that.
I’ve never really considered the impact that deafness has had on my personality. But it seems fairly logical now, that something that has affected me since I was born might make me develop behaviours that I might not otherwise have.
I think I was diagnosed as deaf very late on, which is unusual. From my memory, I was diagnosed at about six… I was definitely at school anyway, so maybe I was slightly younger. But I remember people being shocked that it was undetected for so long. Looking around online it looks like most children are diagnosed with deafness at the age of 2 or 3; their learning and development plateaus and they start struggling at school and find it difficult to make friends, etc. I am not sure how I coped, really, but it’s fairly clear that I developed strategies for learning and socialising, without even realising it or being taught it formally: It turned out that I was extremely good at lipreading, and as such I was reliant on looking at lips in order to figure out what people were saying. [I still find it hard to hear people in the dark, even though that seems like that might not make sense!] I was also an avid reader: I developed a knack for language that put me years ahead of my peers in terms of reading and writing.
I remember being told when I was slightly older that as a child I would get aggressive with people because it was frustrating not being understood or not being able to participate in conversations. I didn’t have many friends, because the extra effort I put into socialising is exhausting – I had to work twice as hard as anyone else, to understand what was going on. As a result, I suppose, I created a whole other world for myself where I wasn’t bullied, I wasn’t isolated socially, and I didn’t really have to deal with real people because it was too difficult and stressful.
Hearing aids were tried. I had kids turning them up in my ears, ripping them out of my ears and throwing them on the floor, etc, and in a way having that on your person is another way to mark you out as a target. I actually tried using hearing aids at university, but I found that where it made up for my deafness (high frequency), the fact that it was in my ear – essentially blocking it – actually wiped out half of the hearing that I do have. It was like being underwater or in a bubble, and it was truly disorientating and horrible. [Please consider this when you next visit your grandparents and they can't hear you! It sucks to be deaf.] It made me shrink into myself because I found it even more difficult, and I felt like I was shouting when I was talking normally. I think given that I developed my own ways of coping with being deaf, there is very little to be gained from using them, and I will never wear hearing aids again.
And so it goes on. I’ve just read something about detecting deafness in children and it says if they’re diagnosed after about 2 or 3, then their development may be hampered permanently. I wonder if that has happened to me, if I am so stuck in my ways that I will always be slightly distanced from people. The more I think about it, the more I realise that I much prefer working alone. That I struggle in environments with loud noises or several sources of noise, which is why I started using headphones in the office (until I got told off). I tend to go through life by being in my own world and with my own thoughts, because I am used to not being able to cope with socialising – and I think people mistake this for not paying attention or being a daydreamer. I am just doing what I learned to: Expecting to be left out and isolated. Saving a whole lot of effort in trying to keep up with a long group conversation. Trying to not be too dependent upon other people for amusement (I amuse myself way more than other people).
It occurred to me that I might look like I am stunted when I’m put in a situation where there are lots of people but I suppose it’s more that I am fine with one-on-one interaction because my attention is fully focused on them, and theirs on me. In a group situation I have to figure out who is going to talk next, watch them, then the next person, watch them… Then accept that inevitably I’m going to miss out on some big joke, I’ll have to ask what people are laughing at, and then they get frustrated at having to explain it. “But explaining it kills the joke” – yeah but explaining it also helps me to join in…
I hope that after coming out to people they will understand and they will give me some slack. Maybe it might explain my behaviour which may have seemed unusual. I think the tricky part is ensuring that people remember and are aware all the time. It’s an invisible disability – mostly, I forget this myself! – which means that there isn’t any reminder there, I don’t have crutches or a wheelchair, so it’s not always obvious that I might have extra needs or that situations might need to be adapted for me. I genuinely don’t ever make a fuss about this stuff because I don’t see myself as ‘disabled’ and I think that’s a negative and self-fulfilling state of being, but it would be nice if people are a little easier on me at work from now on.