Friday, 25 March 2016

These hearing aids aren't just for show A.k.a. This message speaks volumes.

In July 2014 I wrote this post in Swedish after attending Swecon 2014, the Steampunk festival, in Gävle, Sweden.

I was asked to be on the program, which made me simultaneously very happy and very nervous. I’d never been on a panel before and didn't know if I actually had something sensible to say. And, of course, there's my hearing disability to be nervous about.

I was worried that I would mishear the audience questions, or mishear what my fellow panel members would say, or that I would get too tired and have a hard time concentrating during the panels. This might seem silly, but as a HoH (hard of hearing) person, you get fairly use to hearing the wrong thing, answering the wrong thing, and seeming a bit confused. People don’t see the hearing aids, they don’t see what you can and can’t hear, and I think many just assume you’re a little bit slow.

It's not a question of me being slow, dumb or unintelligent. 

I was born with a sensorineural hearing disability, caused by a damage in my inner ear. I don’t have the needed amount of hearing cells, and the ones I have are not functioning as they should. It's inoperable. I can’t use a cochlear implant. The only thing that helps are hearing aids.

Different from a conductive hearing loss which affects all frequencies, my hearing loss means I have more difficulties hearing certain frequencies, and that sound gets distorted, even with a hearing aid. Which means that I have to process sound and figure out what it means. 

The normal speaking tone is around 60 decibels. I can pick up mosts frequencies as low as 45-55 decibels. Birds chirping and people whispering is almost silence to me. I am never going to be a sneaky ninja. I could never really participate in a whispering game. Heck, even sounds in the normal speaking range is going to fall of my registry. Some consonants are very hard. In Swedish, such words as juni or juli are a huge challenge for me.

Every time I listen to someone talk, or try to participate in a conversation, I have to focus, concentrate really hard, and translate the distorted sound into words that make sense to me. I have to figure out how to fill in the gaps. This makes me tired all the time, and being tired makes it even harder to listen. Imagine if someone took away every third word in this text. Reading this might then be a very tough nut to crack! Welcome to my everyday conversation.

My brain is constantly working overtime trying to interpret sounds through my damaged inner ear. And it takes a lot of brainpower. But despite my best efforts, and hearing aids in both sides, the sounds gets distorted, or they just fall away. I usually hear about 80-90 % of what's being said with hearing aids.

On a good day.

When it's peaceful and quiet around me.

When the person talking to me is right in front of me. Like, right next to me.

Needless to say, in noisy environments like cons and such, my hearing aids and my ability to concentrate will be put to the test. It's a real struggle, one I always lose in the end since I get too tired. And it sucks.

As a kid, having the disability-talk was hard, and I was afraid my friends would stop coming around if I was too demanding or troublesome. I get that it's tiring to have to think about how you stand when you speak to me, and to talk slowly and clearly. So I dealt with it in a joking matter, my way of solving the problem without even having to explain myself. I told my friends I was a spy and the hearing aids were my spy gear. When someone said something I didn't hear, I blamed my in-ear-spy-device.

"These hearing aids aren't just for show" has gotten to be my adult-joking-thing. I like to make jokes about my condition to help people remember it.

The problem is, it's not working any more. I really need my friends to understand how this disability affects me, like every day. And I really need those of you who arrange cons to learn what to do to make things easier for me and others with hearing disabilities. It's difficult for me to talk about it since I've spent my whole life trying to Not Be A Nuisance, but this is my reality and it doesn't go away.

First of all, it's a social handicap. It's a communication obstacle. I'm having trouble following conversations since I mishear words.

As disabled, you develop strategies to be able to make the most of social gatherings. If I do go out on the town, I usually take off my hearing aids (they don't help much anyway if I'm in a noisy environment). If I'm in a coffeeshop with friends, I sit in the middle of the room so everybody is equally close to me. I also try to ask questions, summarize and confirm that I’ve heard right, and that way I catch up if I miss a few words.

My hearing disability often results in me double checking instructions, to make sure I got them right. I ask and ask again, and sometimes I have to cut in while people are talking and ask them to repeat themselves. I constantly worry about being rude, disrupting my friends like that, but if I don’t catch the phrase while it’s said, the rest of the sentence may be gibberish too. I’m constantly feeling like a socially awkward penguin because of this.

It’s also demanding for my friends, whom have to accommodate my special needs. They have to be sure to include me in conversations and make sure that I hear them. I am constantly missing the punch line in jokes, and sometimes when asked if they can repeat the word, I am told that it’s not important or “I’ll repeat it later”, which inadvertently makes me feel outside and less important. I know it’s not easy for them, and it’s sure not easy for me.

Secondly, it’s exhausting to have to concentrate so hard all the time.

I avoid noisy environments like discos, concerts, pubs, games. Sometimes I choose to attend these things, like cons, but I always know that there will come a time when I pay for the effort with physical and mental exhaustion. (All my spoons and then some.)

What can you do to help?

In social situations: 

Face me when talking.
Repeat or double check that I’ve got the important information.
Help me sit in the center so I can hear everyone.
Speak clearly, and if I ask you to repeat yourself, try to raise your voice just a tad, but mostly speak slower and more clearly.
If you have a induction loop in a facility, use it.
Microphones should always be used, and if an audience microphone is available, use it too.
Alternatively, have the moderator repeat the questions.

When I’m at conventions, I always sit in the front row. If I’m in a panel I prefer to sit in the middle. This is what works for me -- if you don’t know what works for someone else, try asking!

And how did it go at the Steampunkfestival?

Some panels went just fine, if I was placed in the center and didn’t get an audience question. Some panels worked less fine if the moderator forgot to repeat the audience question before someone answered it.

In one panel, I got an audience question and waited for the moderator to repeat it. My silence was interpreted as confusion or not having a good answer, so other panel members answered instead, while I looked like a question mark. I felt really stupid.

I had a slight problem understanding the guests of honour too. One spoke really fast, and one stuttered. It can’t be helped, I get that. People talk the way they talk. I chose to attend other program items.

One panel I listened to did NOT work at all, though. The moderator asked the audience (without using the microphone) if he could skip using the microphone. I misheard him and thought he meant “Do I really have to use the mic?” so I said yes.

When he then put the mic down and started to talk I thought he just chose to ignore me and I got really upset. I stayed and tried to listen, but got so bleedingly tired that I started crying. When the panel was over, I stepped up and said a few harsh words and then I stormed out. Not my finest moment. But I think this illustrates the importance of microphones.

Which only goes to show what NOT to do during conventions (or in general):

Avoid asking if you can be excused from using microphones. It only makes HoH (hard of hearing) people feel like a nuisance. We don’t want to make a big thing out of it. We want to have every possible help we can get without having to beg for it. And some people, like me, have a hard time asking for help.

Think about how you stand in position to the hard of hearing-person. Think about how the sound travels. Make sure you stand fairly close and facing the person.

When someone asks you to repeat what you said, don’t repeat it in the exact same tone. Take it a bit more clearly and slowly, and maybe a bit louder but no yelling. Yelling is rude.

I usually miss the first words of the sentence if the talker is turning to me or stuttering at the start, and if I lose the start I often don’t understand the context. So repeating the key words is helpful.

These tips are helpful when making accommodations for people with my kind of hearing disability. But please do remember, not all hearing problems work the same.

If you’re unsure of how to help, ask, do not assume. Don’t be scared of asking me about my hearing disability, I’m glad to see people taking an interest in how to help me. I know not everyone feels this way, though, and I’m not always up for the discussion. I suggest you proceed with caution and respect when you have questions.

I hope these tips can help people understand the ways sensorineural hearing loss works, and that social exclusion and mental and physical exhaustion is a big part of it. I hope future convention committees can take this under consideration.

5 comments:

CCACaptioning said...

Sweden has speech to text providers (is that not so?). Many friends in other Nordic countries have good benefits for themselves to ask for and get (freely) what we also call Live Event Captioning (you may call it Text Interpreting). Have you looked into that? We'd love to chat with you soon. All the best, Lauren, president, CCACaptioning.org (CCACaptioning@gmail.com)
p.s. all the good suggestions in your wonderful article are helpful for some and at the same time, they cause exhaustion and stress for many others with all sorts of hearing loss and deafness, as you understand so well.

jonesnori said...

Excellent article. Much of it applies to me as well. I also have sensorineural hearing loss, though in my case it was caused by mumps or measles at age 4. (This was before the vaccines came out.) I use hearing aids and read lips. The only thing I do differently is to turn the hearing aids down in noisy situations rather than removing them, and also I prefer to sit against a wall (a corner if possible) in restaurants to avoid the confusion of sound coming from behind me. Otherwise my experience is very similar to yours. Again, thank you for writing this!

Feeejay said...

Lauren, as far as I am aware, we do not have speech to text providers in Sweden.

You mention that my suggestions are helpful for some while cause exhaustion and stress for others with other kinds of hearing loss. I am only trying to explain my own disability, sensorineural hearing loss. I think it's made clear in ny post."But please do remember, not all hearing problems work the same." I am only familiar with my kind of hearing disability so I could not tell you how my suggestions woulf affect others.

Feeejay said...

Thanks! Of course, sometimes it's much easier and more effectful to just leave the hearing aids in and turn them down. I do that too. And the wall thing. :)

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