Does “correcting” a disability alter your identity?

How much does a disability define someone? Numerous charities, role models and awareness campaigns have taught society that an individual’s entire personality is not geared around a physical identifier. Yet, what would happen to a person’s own view of themselves if their disability was corrected?

Researchers in the US and Switzerland have discovered a potential way of treating forms of deafness that are associated with DNA. People, such as myself, who suffer hearing loss from birth are the most likely to benefit from a radical treatment that would use a virus to stimulate hairs in the air.

Initial tests have shown positive results by improving the hearing of mice and experts suggest that this could lead to a human treatment within a decade. That’s not to say that it would be a cure for deafness but, at the very least, it is still far greater than anything I could have imagined within my lifetime.

So why do I feel like I might refuse treatment?

I have lived with hearing aids since I was two years old. In the 24 years I’ve had them, my relationship with them has changed. As a young boy, they didn’t bother me. Most children are accepting and I never really encountered any problems. The teenage years were different. At 13, I started to grow my hair to cover them and I became increasingly self-conscious. What teenager doesn’t get unsure of themselves?

The last few years have seen me grow accepting and even fond of them. I take an odd pride in knowing that they’re what makes me different. There’s a strange satisfaction in challenging stereotypical views of hearing aids being for old people who struggle to keep up in conversation. Most of the time, it barely registers as a thing in my life.

Would having treatment make my life better? Absolutely. Would it come at the cost of altering who I am as a person? That is the question that is more difficult to answer. I can imagine getting old and struggling to walk. I can imagine the pain of losing my hair. I can even imagine hearing a doctor’s diagnosis of cancer.

What I can’t imagine is waking up and not reaching for my bedside table to put in my hearing aids.

Admittedly, there are millions of people who would jump at the chance to have a healthier life. There are far more serious disabilities than mine who deserve greater support and funding for research. Yet, I feel that there is a consideration to be made for the affect these improvements would make on how this person views themselves.

To put that in perspective: if a treatment is found that can radically improve my hearing to the point where I no longer need my aids, would the personal journey of acceptance that I have taken be for nothing?

That’s not a question that can be answered in 500 words.

Source: http://www.bbc.co.uk/news/health-33442820

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Teaching with a disability – Part 2

Previously, I discussed my initial fears about going into teaching with a hearing loss and how that might make me self-conscious. It turned out that students were accepting and it was a non-issue for them.

But what about the physical issues of being in a classroom?

Impracticalities

Each classroom has its own unique character. Some are designed with a positive, student-focused sense of space and light. Big windows frame views of a city giving way to countryside. Desks are arranged in a horseshoe around the teacher and allow for unimpeded eye contact between everyone.

Others are buried deep within the bowels of a campus, away from the sun, dimly lit by regulation eco-friendly bulbs. Students are lined up in lots of short rows and bordered by dull 1980s office walls.  In rooms like this, the hum of air conditioners recirculating stale oxygen can be a particular problem. The gentle buzz, coupled with a lack of vocal enthusiasm from students (particularly in late afternoon lessons), have left me asking people to repeat themselves.

A lot of staff can struggle with this but I’ve suffered slightly more than others. A former teaching colleague who also wore hearing aids shared his disdain for some lessons because of the room they were in. We can both rely on lip-reading to support difficult moments but when a student’s mouth is obscured or they’re mumbling, it can lead to a sense of frustration at yourself; it’s not your fault but it is your fault.

Accents can add a particularly tricky spanner in the works. Britain is a nation made up of pockets of language, each interpreting their own version of English and filtering it through the local culture. Trying to piece together what somebody is saying by reading their lips goes out the window when the sounds and movements they make are completely alien to you.

Nevertheless, it has made me question whether it’s a hearing issue or a lack of understanding. I believe it’s more of the latter.

The big picture

Overall, my hearing loss hasn’t had much of an effect on my physical ability to teach but I feel my success is down to my confidence. I’m not afraid to ask students to repeat themselves and everywhere I’ve worked has been full of wonderful, supportive people.

The fear of getting something wrong is worse than the actual mistake. I’ve moved around enough in my life that I’m used to the period of adjustment to new ways of speaking. I accept that a stumble here and there, as I learn a dialect, will lead to a greater understanding. The key is to be polite and hope people empathise, accommodate and assist you.

Ninety-nine times out of a hundred, they do. That’s a good ratio in any walk of life.

Teaching with a disability – Part 1

In 2012, I moved into teaching in the further education sector. Perhaps “stumbled” is the more correct term. Either way, it forced me to face new challenges related to my disability that I previously hadn’t considered, along with a few fears. So what were they and how did I cope?

“Why do you wear hearing aids?”

In nearly three academic years, dozens of classes and hundreds of students, I’ve only heard this question about 4 times.

Shortly before my first term, I’d taken the bold step of having the last remnants of my long hair cut. I’ll cover the importance of this in a future post but, for now, consider this: I started growing my hair in tandem with my awkward, self-conscious teenage years and had grown used to having my ears hidden. Suddenly, I would be facing a roomful of judgemental young minds with my worst anxieties exposed. I hadn’t thought about this when I took the post but I could feel my nerves shaking when I first stepped in front of those gazing eyes. Teaching non-stop for two hours and knowing a subject inside out? Easy. Answering a simple question about yourself that forces you to confront your disability? That’s another story.

Only, it wasn’t like that. It was a full year until a girl in an English class asked about my hearing aids. I distinctly remember it was after I’d just set them their first activity and I was sitting down to do my register. I felt something inside me stir awake and push a weight to my chest. As I tried to gather my words in a panic, I heard the greatest response I’ll ever hear:

“Why do you think he wears them, dickhead? Don’t be so rude.”

The irony of that statement is not lost on me. More importantly: the anxiety goblin in my chest went back to sleep and hasn’t woken up since. In one instant, a 16-year-old boy poured cold water over anxieties that had been working their way into my brain for the past decade. I didn’t even need to say anything. Other students apologised on the girl’s behalf. I took the register, told her it was ok to ask and gave her a brief explanation. She said she didn’t want to offend but just wanted to know and thanked me for not making her feel stupid.

Unfounded fears

That moment taught me that anyone who asks a question about a disability isn’t being rude or judgemental. They want to learn and to understand what makes you different to them. Each and every time a student has asked the same question, I’ve seen the same response.

Older generations chastise young people for being ignorant and unworldly. They’re plugged into their phones, constantly tapping away and spouting meaningless drivel. I’m not arguing that. However, I’ve never caught a student staring at my ears but I’ve caught other staff do it. Who’s really ignorant?

WHO hearing loss statistics – should we care?

The World Health Organization (WHO) recently published the startling figure that 1.1 billion young people are at risk of suffering from hearing loss through repeat exposure to excessive levels of noise. Experts said headphones and personal music players were mostly to blame. As someone who wears hearing aids but enjoys a loud blast of punk, what’s my take on it?

Who turned up the volume?

Years ago, I interviewed a singer who reminisced about those late teenage nights when he’d listen to a record with the sound barely audible so he wouldn’t wake his parents. “I’d put it up to the first notch and press my ear against the speaker, straining on every note”, he said. There were no headphones back then.

Now, the proliferation of media devices with earphones (particularly the ghastly white ones that are known to bleed music) has given everybody both the opportunity to explore a world of noise privately but, potentially, damage their hearing in the process. Calls have repeatedly been made to limit the decibel output in music players and some companies have put optional limiters in. The keyword there is optional.

Who’s responsible?

Is it the responsibility of the manufacturer or the consumer? As someone who enjoys loud music, has a hearing loss but is also susceptible to further damage, I feel that it’s down to the individual to look after their ears. I’ll raise my hand and say I’ve over-ridden the noise limiters on my MP3 player. I’ve driven my car with the stereo on full blast, which I assume went well past the WHO recommended 100db safety level. I’ve also been crammed next to speakers at a gig for longer than the suggested 15 minutes.

However, in the past year or so I’ve started to notice a slight ringing in my ears that sticks with me after I get out of the car and follows me around for an hour. It might come back later to remind me that I’m not impervious to further damage. Neither are you.

Enjoy the silence

So, on days when I have no particular need for them, I leave my hearing aids on the bedside for a while and enjoy almost complete silence. I can still hear low-frequency sounds like an overhead plane or passing car but it’s a respite from thrashing Slayer at full blast down the motorway.

According to the WHO, I’m one of 360 million people around the world suffering from a moderate to profound hearing loss. At this rate, we could see that number rise to over a billion within a generation. Take care of your ears. Enjoy the silence, as Depeche Mode would say.

(but don’t actually listen to that song loud because it defeats the point)

WHO press release

http://www.who.int/mediacentre/news/releases/2015/ear-care/en/

“It’s funny how you’re into music, isn’t it?”

This question, ushered forward like a nervous teenager asking a girl out for the first time, was posed by a friend during a gig. We’d known each other from shows around the East Midlands punk scene but this was the first time we’d purposefully chosen to buddy-up. From the moment I took off my beanie hat, I could tell he was trying to think of a way to bring up the subject of my hearing aids without sounding stupid or offensive or ignorant. Those brief glances I’m used to seeing, where a persons’ eyes dart back as soon as you catch their gaze, tipped me off to his curiosity.

We were at a dirt-cheap DIY punk gig in Nottingham, held in a tiny warehouse room that probably wouldn’t pass a health and safety inspection. For £8, you enjoyed four loud bands in the company of 40 sweaty people, all vying for the title of wearing the most obscure music t-shirt. His question came after the second band had finished their set and the crowd talked amongst themselves to kill time.  In truth; I admired his effort and the obvious care he took when choosing his words. There have been far less subtle attempts over the years.

I don’t remember my exact response but I think it was a general riff on a short speech I have prepared for those situations. It covers these points:

  • I’m not deaf
  • They help me hear
  • People who wear glasses also read books. Similar situation, dumbass

I appreciated the courage it took to ask because I’ve found there’s a fear about confronting disability. The Paralympics and excellent work done by various people (not least Channel 4 and The Last Leg) have triumphed our differences in society but there is still some squeamishness around asking questions because somebody might be offended.

However, my friend also highlighted a general lack of awareness that is associated with hearing loss. As far as I’m aware, there are no celebrities or famous personalities who have hearing aids / hearing loss and are involved with music (People might point out Beethoven but that’s cheating because he went deaf later in life and was past making good music anyway, so it was probably just his excuse for bad reviews). As a result, I’ve met an assumption that hearing aid wearers are either old, talk funny or use sign language. So, nameless-person-who-sings-in-a-hardcore-band, I’ll be using this blog to highlight some of my experiences and, hopefully, dispel some misconceptions. I’ll also be posting up some audio interviews that I’ve done with alternative/rock bands over the years, so you can hear that I actually do “talk like a normal”.

Questions or comments? Tweet @ashpartridge89