Speaking at the Nystagmus Network Open Day


On Saturday, I attended the Nystagmus Network‘s Open Day in Birmingham, the first time I’ve ever been to an event of this nature. The only time I’ve previously met a group who share one of my eye conditions was after Sight Village last year, when I got together with a handful of people with aniridia in a coffee shop. And that was wonderful, but this weekend’s event was on a much bigger scale. This time, I was going to a big conference for people with nystagmus with hundreds of people in attendance. And I was very much looking forward to.

However, I was also nervous, because I had been invited to be one of the speakers – making this the first time I would ever give a talk in public about myself. I wrote in my last post about how this came about, and how I prepared for it. So now I want to tell you about the day itself and how it went. You can also see a vlog from the weekend on my Youtube channel.

I woke up in the Premier Inn on a drizzly Saturday morning, with the talk I had to deliver naturally forefront in my mind. Thankfully I’d slept well though, which was good. And I had a nice cooked breakfast in the hotel. The member of staff I met at the restaurant was only too happy to go around and get what I wanted for me because I was visually impaired, so that made things a lot easier. That’s happened in other Premier Inns I’ve stayed in before, they’re usually very good like that. So I had bacon, sausage, beans, mushrooms, tomato, hash browns with cheese on top, toast and an apple juice. All of which filled me up nicely.

I then went back upstairs and put my tie on – a green one from the University of Exeter – and managed do it up alright on my own (it’s very rare that I need to put on a tie, so it can take a few attempts to get it right, but this time it was ok). Then I put on my coat and headed out for the Open Day venue.

Night time view of a wide passageway between two shops, with 2 bollards at the opening, and 2 signs above at the far end saying The Burlington Hotel.

The Macdonald Burlington Hotel is just a short walk from the Premier Inn, but is easy to miss when you’ve got dodgy eyesight. It’s down a passageway between shops, and through there it looks a bit like a shopping centre. I had figured out from Street View before that this was the right way to go, but even so I was still confused initially. I didn’t see the overhead signs with the name of the hotel at first, so just thought I was surrounded by shops. So it took me a few moments to figure out where the doors into the hotel were, tucked away in a corner. As soon as you walk in, you can tell it’s quite a fancy hotel from the decor, furniture and the general atmosphere. It took a moment to locate a member of staff, but when I did, they pointed me upstairs to the first floor.

When I got upstairs, the greeting desk was just to the right in the foyer, and Sue Ricketts, the organiser of the day (and nystagmusmum on Twitter and her own blog), recognised me straight away from my photos. It was great to meet her at last after all the emails we’d exchanged, about the article I’d written and the invitation to give my talk. So she welcomed me very kindly and gave me my name badge. I couldn’t read anybody’s badges during the day of course, and I know various people had trouble with that, as was inevitable. But people were happy to introduce themselves to each other anyway, so that didn’t matter.

I was then shown into a room called Horton C. The Horton Suite itself is actually one huge room, which can hold up to 500 people – which, when I’d initially been checking out the hotel on their website, made my speech seem even more daunting, as I didn’t see room C mentioned at first. But their site then went on to explain that there are special partitions which can be moved into place to divide the space into 3 areas – Horton A holding 250 delegates, and Horton B & C holding 80 each. And Horton C was where I would be. So that was quite a relief! As it was, I don’t think we quite had 80 people in Horton C, though I could be wrong. I’m terrible at estimating crowd numbers, but maybe we had around 50 or so? Whatever the figure, it was quite a few people, but not overwhelmingly so.

Sue took me to the front row and sat me next to the lady who was speaking before me – Flóra Raffai, CEO of Camsight, an organisation for visually impaired people in Cambridge. She’s not visually impaired herself, but was there to talk about accessing local services for the visually impaired, and indeed it became apparent from her talk that Camsight do a great deal for people. She was really friendly and it was great to chat to her for a little while before proceedings started, as it really helped me to feel more at ease.

Shortly after 10am, the charity’s chairman Richard Wilson – no, not that one from the telly! – started the morning’s workshops with some introductory words. He was in Horton A, but through the magic of technology we could hear him through a box in Horton C, and we dutifully cheered and clapped when he asked us to confirm we could hear him, which I think was quite amusing to everyone in Horton A! He welcomed us all and laid out what the day would entail, and then it all got underway.

The morning session was divided into 3 distinct parts. There were speakers talking to parents in Horton A, the children had plenty to keep them occupied in Horton B, and Horton C was for speakers talking to adults. I don’t know how the other rooms operated, but for those of us in Horton C there was nobody to introduce each speaker, as there was no need. We were just left to our own devices to get up and introduce ourselves, and to keep an eye on the time to make sure we didn’t overrun. And that worked very well. The front of the room was just a large empty space, with no podium or microphone. So we could make use of the space however we wished, and just had to make sure we projected our voices well enough for the people at the back to hear us. Which wasn’t difficult as it wasn’t a very big room overall.

So after Flóra gave her interesting speech about Camsight at 10:15, it was my turn to get up and speak at 10:45. And I’m happy to say it went really well. My rehearsing had paid off, so I was comfortable with the structure of my story and the key points I wanted to say. It flowed very nicely and consistently, and I didn’t forget anything as far as I know. The experience of actually doing it is kind of a blur in my mind really, as once I got into my stride it all came out very naturally. Not being restricted to a podium and not holding a microphone also allowed me to pace and gesture as I spoke, which I also think helped it to feel more natural, as I could allow myself to relax and move freely, just making sure I was facing the audience all the time.

My speech was about why I’d moved to London and the various ways that I had built social networks there. I’ll be posting written and video versions of it very soon. As I knew would be the case, I think I spoke a bit quicker than the 15 minutes I’d been doing when rehearsing in private. So I felt quite relieved when that part of it was over, having got through it without any hiccups.

Then I opened it up for people to ask questions or share any experiences they had, as I’d been asked to make my session interactive if at all possible. I had been very glad when I was told that, because it meant I didn’t have to speak for an entire 30 minutes. That said, however, it did rely on people actually wanting to chip in – so it would have been a bit embarrassing if nobody had wanted to! But thankfully people did want to talk, so the session continued to flow very nicely.

For instance, some people were curious to know how I got on interacting with other people, in terms of any issues they may have had with my disability. And I explained that people had been absolutely fine with me. People go to things like social groups precisely because they want to meet people that are new and different from their existing friends, so they’re generally always happy to say hello to new members. Sure, a few people have been a bit wary or nervous initially when they’ve noticed I’m visually impaired, which is a reaction I’ve initially had at work from some people too. But as people get to know me, they soon relax. And while it is of course easier said than done to make the first steps into meeting new people, it does get easier and you get more confident the more you do it.

And we all agreed on the importance of changing people’s perceptions, to try and reduce the negative connotations that people associate with disability. We are people first and foremost, who happen to have disabilities, and we can still live fulfilling lives, and we need to keep showing people and getting that message out there.

So I was very pleased that it got people talking, and I got the impression it gave people plenty to think about, including the reassurance that a condition like nystagmus isn’t a barrier to having a good social life. And I stuck to time, only checking the time on my phone a couple of times to make sure I knew when to step aside. I had a big sigh of relief when I sat down after that, I can tell you! And I felt very pleased with how it went too.

After the third speaker went up (Ian Hughes from Associated Optical talking about their eSight technology), we then had a few minutes to talk among ourselves before heading out to the main lobby area to mingle with people, get some food, etc, during the extended lunch break.

It was during this part of the day that it became apparent how well my speech had gone down. Quite a few people came up to me to say how interesting it was and to congratulate me for doing it, with one person even saying that it didn’t show that I was a first time speaker, which is quite a compliment! A lady called Heather found that it had particularly resonated with her own situation, and we ended up having a lovely long chat, along with a guy called Tim who came over and joined us as well. The three of us ended up hanging around together for most of the day after that, including sitting at a table together during the afternoon session, while chatting to other people who were sitting with us.

Sue Ricketts also found me to ask how my talk had gone, and was very pleased to hear it had been successful. It was certainly humbling and flattering to know that it had gone so well, and I’m very grateful to everyone for their reactions and responses, including a few tweets I’ve seen since. It really made it feel worthwhile, I’m really glad I did it.

So it was great to be able to relax for the afternoon after that, with the session starting at about 2pm. By this point the partitions in the Horton Suite had been removed, so now everyone could be together, sitting around the big round tables facing the stage area, with a big screen and a podium.

A lot of things were covered over the next couple of hours – brief updates from various research teams, the charity’s Annual General Meeting, keynote speaker Jamie Fuller giving an inspirational and emotional talk about getting his visually impaired son Josh into competitive skiing, the story behind the Nystagmus Network, fundraising achievements by marathon runners and a very generous family, a tribute to Steve McKay and the launch of a photo competition in his memory, the launch of this year’s Wobbly Wednesday campaign (The Big Swim), and the world premiere of a short film called Through My Lenses by David Katz, who didn’t reveal to people that he was legally blind until he had been a highly successful photographer for many years.

So it was a packed and interesting afternoon. I couldn’t read any of the text that came up on the screen in the middle of the stage, but that didn’t matter, as I was able to pick up all the key points from the people talking, so I didn’t miss anything vital. I had missed out on a few things during the extended lunch break – including the exhibition stands, the Facebook selfie corner, and buying raffle tickets – but that’s simply because I was happily engaged in conversation with people and didn’t have time to do anything else. And it was that interaction that mattered most, and was the key reason we were all there.

Everyone then gradually dispersed and made their way home after that, and I got back to the Premier Inn at around 4:30pm. I got changed into more casual clothes and went out to have a bite to eat and have a wander around the streets near the hotel. I didn’t stray too far as it was quickly getting dark, and the lighting wasn’t always great. But there are shops and restaurants everywhere, it’s a really busy area.

IMG_9240

Seeing trams feels like quite a novelty too – I know there are a few in London, but I haven’t come across them or used them yet. It sounded like they had audio announcements at the tram stops too, which is cool. I also found a church that I later learned is called St Martins in the Bullring, which looked quite impressive.

IMG_9249

Then, when I got back to the Premier Inn, I walked the other way past it to go into the Grand Central shopping centre, which is a huge indoor place with many big name stores, including John Lewis. And it’s from there that you go down escalators to the station, it’s all in the one big building. So now I finally knew how to get from the station to the Premier Inn and vice versa – too late for my arrival on Friday, but at least I would be able to get to the station much more easily on Sunday now.

A large junction in Birmingham Grand Central shopping centre. The centre of the junction has a black floor with a tall black directions sign in the middle, and many randomly place spotlights overhead. Lighter coloured paths with strip lighting lead off left and right. A care and information desk sit at the back between the paths.

After that I went back to my hotel room, and spent some time recording a version of my speech to post on my Youtube channel, and also recording a little bit more for my vlog as well. I hadn’t done any vlogging while I was at the Open Day event itself, because there hadn’t been time in amongst chatting to people and listening to other speakers. But that didn’t matter. I still got a half hour vlog out of it. I could have trimmed it down and cut parts out, but for my first vlog I figured I’d make the most of it!

On Sunday morning I got to have a bit of lie-in, before having another cooked breakfast in the hotel, again kindly assisted by the same member of staff as the previous today. I then went back to my bedroom and recorded another video for my Youtube channel, but this one was unrelated to the Open Day. I just had time to spare, and this particular idea was next on my list to do, so it was an ideal opportunity to record it.

I then made my way back to Birmingham New Street station via the Grand Central shopping centre, now I knew the way. Finding the best way on to platform 1 a few moments, but I got on the train with plenty of time to spare. The journey was fine, and I listened to another few chapters from The Screaming Staircase by Jonathan Stroud along the way, which I mentioned in my previous post. Back in London, I had to take a slightly different route home on the Tube because of engineering works, but that was fine, I got home without any major delays.

So it was a very successful and enjoyable weekend. It was great to meet so many people at the Open Day, and I survived my first public speech. I’m very glad I did it, and I’m very proud of how well it was received. Thank you to everyone who gave it such a positive response and got chatting to me during the event, thank you to Sue Ricketts and the Nystagmus Network for inviting me, and thank you to Emily at Fashioneyesta for her support with the speech and the vlog (and congratulations on your dissertation result!).

So thank you for reading, I hope you got a good sense of what the day was like. As I said before, my speech will be the next thing I post, so I hope you enjoy that too!

Author: Glen

Vsually impaired, with Aniridia & Nystagmus. I'm a fan of Doctor Who, classic sitcoms, Queen and 60s-80s rock & pop. I like to blog about my experiences as a disabled person, and about the things I enjoy in general.

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