Readers of this blog will be aware that, as well as being autistic, I have severe unbalanced hearing loss and tinnitus, thanks to Ménière's disease (a balance disorder with consequences for hearing). I have written about the overlap between Ménière's and autism before. Social isolation is a well-known consequence of both hearing loss and autism, often linked to loneliness, higher health care needs and increased mortality rate. I mention all this, because the story I am about to tell illustrates how this affects people like me, even when everybody around has the best intentions and tries to help.
A couple of weeks ago, I attended the Internoise conference at the Scottish Exhibition Centre in Glasgow (an enormous venue where the COP26 summit was held). I was invited to chair a panel on Aural Diversity (a research project about hearing difference that I lead). Internoise is the largest conference in the world on noise control engineering. As you can imagine, the kind of research they deal with is mostly large-scale and industrial in nature. So it was a rare thing to find them being receptive to the idea that not everybody hears with perfectly normal ears. This shows that the kind of advocacy I and many others engage in is beginning to penetrate.
My session went very well and we had a lot of positive feedback and interested engagement from the scientists and engineers. This post is not really about the academic side of the conference. If you want to find out more, then the website given above and the new book on Aural Diversity that I co-edited should suffice.
I sent the conference organisers my Access Rider well in advance, and they shared it with the venue. This really paid off, because I was well looked after. I was personally greeted by very sympathetic people who were keen to help, and eager to learn more about what they could do to support me. I had a quiet room, complete with suitable lighting, stim toys and an emergency bucket in case of vomiting (fortunately not used). The session I chaired was well managed, with low level lighting and silent applause. In other sessions, I had reserved seating at the front. I was given navigation guidance and centre staff helped me quickly and politely if I lost my bearings. All in all, it was superb and the result was that I ended each day with sufficient spoons to be able to enjoy the evenings.
On the final evening, there was to be a social event. Normally, I would not attend such events, but on this day I had no panel to chair and no papers to give and all of my aural diversity colleagues had left town, so I thought I would give it a go. Armed with my survival bag (noise cancelling headphones, personal air purifier, clip-on sunglasses, etc.) I set off on the half hour walk across Glasgow to arrive at Merchant's Square, an enormous and historical indoor market that was filled with retail outlets and restaurants. It had been booked out by the conference and we were welcomed in by a piper (great!) and the main organiser who had been so nice to me.
The plan was for supper followed by a ceilidh (Scottish dancing). I had already decided that I would leave before the ceilidh, but I was looking forward to the supper and perhaps having an opportunity to meet some of the delegates who were not aware of aural diversity. However I had, of course, completely underestimated the overwhelming scale of the place and the wave of noise. There were several hundred people all talking in a space that was vast and echoing. Within ten minutes, I realised that my headphones were not sufficient to prevent the noise getting through, and my proprioception began to collapse as I could not see the corners and I started to lose a sense of my physical presence.
It was a dangerous situation and I knew I had to get out (all thoughts of social interaction had already departed). As I rushed for the exit, the nice organiser spotted me and was immediately concerned. I explained the situation and she quickly summoned one of the restaurant managers. I was offered a free meal in an isolated spot. I was naturally very grateful and so found myself sitting in a side area away from the crowds, eating a meal alone, before anybody else had been served food. I ate it as quickly as I could and left. My social isolation was complete and it took a big social event to reveal just how socially isolated I am.
There is a twist to this tale. It was too early to go back to the hotel, so I walked across town and ended up in a traditional Scottish whisky bar. There were only a few people there and it was quiet, so I happily sat and drank a very nice single malt (Port Charlotte). The barman, looking to increase clientele, asked if I would mind tagging my location on Facebook, which I was happy to do. Suddenly, an old friend of mine from Amsterdam messaged to say that he happened to be in Glasgow that night! I had not seen him for ten years, so it was a real joy when he appeared in the bar and we spent a wonderful evening together, talking, drinking and reminiscing. I am quite content to sit on my own, but I am also very happy to be with a friend or in a small group.
Social isolation is a real issue for people like me. I think it has affected my career, especially in music which seems to rely on networking and self promotion. It is ironic that noise was my biggest problem at the social event of a conference devoted to noise control. The people who are most concerned with reducing noise turned out to be unable to control it themselves. It mirrored my position at the conference itself: an interesting insertion into a field that is yet to recognise the full extent of the diversity of lived experience. I like to think that my evening will have had an impact on the organisers, such that they might in future years be able to offer alternatives to gathering everybody into one big space like that.
