What about us? Invisibility and why enough is enough.

There was once a moment when I thought really long and hard before I finally realised that I couldn’t remember what it was like to have no hearing impairment. The realisation made me sad because it felt like I’d lost something very special, but it also helped me come to terms with the fact that roughly half of my ability to hear had been destroyed by a series of growths that had gone undetected deep within my ear.

When it was revealed just how much damage had been done I realised that things wouldn’t change drastically, but that they would change. I was right. I think I probably unintentionally ignore people about Five times a day, say ‘what?’ about Ten, almost punch people who have approached me from behind without me hearing them too often, and nearly get hit by those cars with practically silent engines at least a couple of times a week.

I don’t expect people who have never experienced hearing loss to understand what it is like. I’m often asked what it is like and the best way I can describe it is to put noise cancelling headphones on one ear, leave the other exposed while all you can hear through the covered ear is the blood rushing through your head. That’s what I hear. Also, when people speak to me or I hear a noise it often seems like it’s on my left hand side when it might not be, because my left ear has to ‘make up’ for my right ear.

People often think that I’m stupid because I haven’t answered their question, or have answered a completely different question because I didn’t hear them properly. I often feel stupid as a result too, even though I’m not and I feel incredibly awkward when I have to explain the issue. There are also some social situations that are made very difficult when you have hearing loss. Being in a loud pub or club means that conversation becomes very difficult – if I ever stare at your face it’s because I’m reading your lips so I can hear what you’re saying. When people realise this they over emphasise their words and I can no longer read what they’re saying. I also get shouted at a lot, which is just rude.

Also, I no longer go to the cinema because people making noises around me make it difficult to hear what is happening on the screen, and the same goes for sitting in the audience at a conference too. When people start to talk or whisper behind me it isn’t just a bit distracting… it’s totally distracting.

Recently my friend Chris wrote about his negative experiences at a Secularist conference where the needs of him and others were not considered or met. Chris has total vision impairment. I was really sad to hear about this happening to him and the other attendees, but really pleased to discover that the organisers are going to work to improve things. I met  Chris at QEDcon in April this year and after the conference we traveled by train together to the city of Bath, and it was quite interesting to learn more about his experiences as someone with vision impairment in society. It made me realise that even a simple train journey was a completely different experience for the two of us.

I also got a chance to play a game on his phone that is purely audio, designed so that those with vision impairments can do everyday things like playing games and use iPhones. It was a really interesting experience and I totally sucked at it but it clued me in to a world around us that is slowly realising that it is inhabited with people who have varying needs, but we’re not quite there yet. I have come to learn over the years that conferences and public talks are just one place where needs are often not met, through a series of frustrating personal experiences and anecdotes.

There are really simple things that many event organisers fail to do because they simply don’t consider them… and I find it increasingly difficult to accept that such a failure of consideration is okay. Examples of problems include friends and acquaintances of mine who use wheelchairs arriving at a venue for a Skeptics in the Pub talk only to discover three flights of stairs between them and the event and, as a result, deciding to never attend again. I have friends with severe food allergies who get treated as though they’re being difficult when they point out they can’t eat any of the food supplied by the event – even when they’ve paid for it, and I recall vividly a friend being told he couldn’t speak at a conference because of his mental health issues as the organisers thought it was best if he stayed at home. For fucking real. 

These may seem like huge failures, but they’re simple things to get wrong and so many people get them wrong when organising an event and not considering the basic needs of the people in the audience – like ‘can people get into the rooms?’, ‘Have we provided our program in large print?’ ‘Could people with hearing aids benefit from the use of a hearing induction loop system?’ or ‘Can they use the website for booking?’.

‘Wait what? A website?’ Yes. Websites can be a nightmare to navigate for people with vision impairment who use audio software to read the web. If the website has sloppy coding the audio software will often read that coding aloud. If you don’t add descriptions and titles to your images and instead keep their titles as ‘IMG2333564576543465.png’ then it will read that aloud. If you do not make links easy to identify, then they will be confusing, and if you don’t put in captcha images with easy to hear audio alternatives then people with vision impairments are not going to be able to use them. It’s actually very disappointing and mind blowing just how many websites are user-unfriendly. It’s also not just shocking – it’s discrimination. If your website isn’t user-friendly, if your event is not user-friendly, you are discriminating against people.

Personally, I have spoken at conferences or events where the audience did not get provided with a microphone during a Q&A which makes it very difficult for a person with hearing impairment to hear what is being said. A number of times I had told the organisers prior to the event this would be a problem, but they didn’t get a second microphone because it was too difficult. Yes. My hearing impairment was too difficult to cater to because microphones are rare items, apparently… On a number of other occasions at Skeptics in the Pub events I have had to deliver talks to large audiences with no microphone, and due to the ENT surgery I had I can’t talk for long periods of time – let alone shout. This actually has health implications and now I refuse to deliver a talk if there is no microphone provided and it makes me seem like the one being awkward or difficult.

These are just a few of the simple things that conference organisers should consider when planning their events. There’s so much talk within skeptical communities about inclusiveness and making people feel welcomed, but it often seems that this stops short of those who have vision, hearing or mobility impairments and more. I’m only partially deaf and don’t have as bad an experience as other might, but my experiences have certainly opened my eyes up to the frustrating situations at events not designed for everybody.

I understand that it can be difficult to accommodate to the needs of everybody, and there are cost implications – yet I’d rather attend an event that tried, rather than one that simply didn’t think it was important enough. By the way, Cornell University have a great approach to accessibly at their events and even have a PDF checklist people can download to help when making these considerations.

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4 Comments on What about us? Invisibility and why enough is enough.

  1. Edinburgh is particularly notorious for its accessible venues. Take Ghost Tours, people on crutches could probably mange some of them, people in wheelchairs probably none. Same with theatre events, talks, you name it.

    It’s infuriating trying to find a venue that is usable AND accessible friendly. When I first started Edinburgh Skeptics we used the downstairs bar at what was then Nicol Edwards and that was the only venue I recall that had a level access from the street to get in.

    Due to some laws about how far out venues can have ramps it makes adding something as simple as a ramp nearly impossibly at best and illegal at worst. The Banshee Labyrinth has an accessible toilet… up a flight of stairs!

    Its atrocious how poor the accessible facilities are in Edinburgh. And when you dont have money to pay to hire a accessible venue it limits it so much and it;s really infuriating as an organiser. You;re left with the nasty choice of staging a show that limits your audience, or not doing the show at all in some instances, especially at shorter notice.

    Both my Fringe shows this year are in fully accessible venues, but thats pure dumb luck as you get allocated venues and dont usually have a choice. Its really annoying from an organiser point of view that I can’t always provide accessible venues for my shows. Especially as a lot of my theatre work is on social issues that may actually affect people with certain disabilities.

    I believe much of it is to do with laws on what type of modifications can be made to buildings, as much of Edinburgh is pretty old and falls under rather strict laws- ones that mean you have to have a wheel chair accessible toilet, but then cant have wheel chair access to the venue because a ramp would violate other laws. It’s ridiculous and needs to change.

  2. I totally agree with this post, right up until the suggestion that they’re easy things to fix; because sadly, speaking as someone in a group who’ve thought long and hard about these issues (London/Soho Skeptics), these things are often anything but simple for an event organiser to deal with.

    We don’t have a venue that has wheelchair access. That’s not because we’ve not wanted to, but because even in central London it’s proven to be next to impossible to find one that’s good and cheap (and I’m very open to anyone who has good suggestions for us, but 9 months in we’ve had none so far). Large rooms in London tend to be up on a higher floor, or in basements, and it’s rare that pubs install disable access for floors other than the main bar. Moving to event spaces like halls incurs additional costs and risks, and often means losing the atmosphere.

    As for an induction loop system, the chances of a venue having one are remote. That means buying a portable kit, which would cost around £500. We’d then have the technical challenge of operating and testing it, and another big chunk of kit to haul to and from the pub each night. We’d also have issues of compatibility with the existing PA system – at Penderel’s Oak for example the sound in the room is atrocious, and anything connected to it is liable to trigger all sorts of problems with feedback.

    In short, it would be a challenge for us to do this at Soho (though I’m certainly not against trying), and we have a ton of resources and expertise to hand. For the majority of SITPs I don’t think it’s remotely a realistic prospect.

    As for universities, the whole point of SITP for me is precisely that it’s not a dry talk in a lecturer theatre. That said, we have done one event in an accessible lecture theatre – in that case the venue cost us around £1,200.

    In short, I think Ash hits the nail on the head above – this isn’t a skeptic problem per se, it’s a general venue problem. The fact is that the vast majority of public venues for talks are completely inadequate for people with accessibility issues, to quite a shocking extent.

    • I didn’t say it was just a skeptics problem. It’s everyone’s problem, and I know the solutions aren’t easy, but at least you’re aware of them.

  3. Chris Pampling // 25 May, 2013 at 1:33 pm // Reply

    @Martin Robbins, you can hire portable induction loop systems. Ask your local Council for Voluntary Service or Voluntary Action if they have one you can hire.

    I agree about central London venues being barely accessible for able-bodied people let alone people like us. Toilets down a spiral staircase for example. But venues don’t just have to be pubs, you know. Surely you have community centres in London? Churches?

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