Building My New Social Network With A Visual Impairment

I’ve shared overviews of this story as guest posts on Scope’s community forum and the Nystagmus Network’s newsletter. Many thanks to them both for featuring me! And if you’ve found me via one of those articles or a social media promotion, hello and welcome! 🙂

—

On September 30th, I gave a talk at the Nystagmus Network’s Open Day about how I had been building a new social network for myself in London. It was my first time giving a public speech about myself, but it went really well. I spoke for about 15 minutes, then we had a group discussion for the next 15 minutes. It got a very positive response, and I got chatting to many people as a result of it, so I was very happy with it. And I’ve written blog posts about how I prepared for it and my experience at the Open Day.

So this post is a written version of that speech, and I’ve posted a video version that I filmed on the same evening. Both are longer than the actual speech I gave at the Open Day, as without constraints on time or length I’ve been able to explain things in a bit more detail. So the actual speech was a slightly more concise version of this, although 15 minutes was still quite a bit of time to fill!

Obviously my situation is unique to me, and everyone’s circumstances will be different in their own way. I’m just giving examples of the things I’ve done. The overall aim is to show that it’s important and worthwhile to try things that interest you and grasp opportunities when they arise, as you never know what will result from them. You may have to push yourself out of your comfort zone a bit, and I know that can be easier said than done. It was a challenge for me, and it still can be sometimes. But the more you try things, the more confident you’ll get, and you’ll soon start to reap the rewards of your efforts. Otherwise, you’ll always be asking yourself ‘what if’, which is never helpful.

So I hope you enjoy reading this. Thank you to Sue Ricketts and the Nystagmus Network for asking me to share my story at the Open Day, and to all those who responded to it so well.

Contents

• Relocation
• Isolation
• Non-Disabled Social Groups
• Visually Impaired Social Groups
• Social Media
• Final Thoughts

Relocation

This has been a really big year for me, because last Christmas my mother and I moved to London from the Westcountry. This was a surprise to quite a few people – ourselves included, as it had never originally been the plan for us to do so.

Mum and Dad came from London, but had met at the RNIB’s Manor House in Torquay – a rehabilitation centre for visually impaired people to help them learn living skills and increase their independence. They fell in love with the area as well as each other, and thus ended up moving down to Devon together. Hence I was born and raised there.

Consequently, I had actively been planning to move to Exeter, as that would have been an ideal place to live. I went to school, college and university there, so I knew a lot of people in the area and thus would have had a good social foundation to start with. Plus I know my way around the city well, there’s plenty to do, it has good transport links and career opportunities, etc. So I know I would have been very happy there. It also meant I would still be near to my parents – not just because they’re my family, but also because they’re both registered blind, so as the best-sighted person amongst us I support them in that regard too.

But, as we all know, life tends to throw unexpected curveballs now and again. And so, when Dad passed away unexpectedly early, just as he was about to retire, that completely changed everything, as you can imagine. Now there was nothing anchoring my mother in Devon any more, so she wanted to move back to London. This desire was based on the fact that her mother was still alive in the city at that point, which meant there was a good opportunity to do it.

Initially we planned for Mum to move in with her, with me getting a place nearby, as it would have been too crowded living with my Mum and Nan under one small roof. But then Nan passed away a couple of years later at the age of 105, which meant we inherited the house anyway. So now there was room for Mum and I to move in there together, saving me the bother of getting my own place after all. Of course, that is naturally still something I’m keen to do, but it made things a lot simpler to begin with.

It just came down to timing. If Dad had still been alive when Nan died (as we had logically expected), then her London house would have been sold, because he wanted to enjoy his retirement in Devon. Hence the belief that we’d always be there. But in his absence, moving into a house we’d inherited in London was now an easy choice, as it was the perfect opportunity to make a fresh start. It’s the house Mum grew up in during her childhood, and I stayed there a lot as a kid when we visited to see our relatives. So we were very familiar with the property and the public transport links, and thus knew that we would settle in easily.

It took us a few more years to make it happen, as there were issues in getting work done on our old house to prepare it for sale, and the sale process itself also took some time. So ultimately it took 6 years from Dad’s passing until we actually relocated. If we’d known it was going to take that long, we might have done things differently, sure. But hindsight’s a wonderful thing. And what mattered was that we had something to look forward to, a goal to aim for, taking a positive out of a negative. Even so, it was getting frustrating towards the end, so when we did finally make it to London, it did feel like a big weight had been lifted off us.

Isolation

However, as wonderful as all that was, it also meant that I was leaving all of my friends behind. For 3 decades I’d had my own little social bubble down in Devon that I was now about to pop. Indeed, in some ways it was more like bubble wrap really, as I had surrounded myself with the things that made me feel most comfortable and safe. I was doing the same things with the same people in the same places, leading a simple, routine life, sticking with what I knew. I wasn’t particularly adventurous, as there didn’t seem to be much opportunity, incentive, or necessity to do so. And that was fine. I had been happy and content that way, biding my time until I could get to Exeter, where I knew it would be easier to explore, try new things and expand my horizons more easily.

But now I was going to be moving to a far bigger city, which has an infinite number of wonderful things to see and do and enjoy, and that was a very exciting prospect. But I didn’t know anybody in the city either, which also made it feel rather daunting. The irony of living in a place filled with millions of people is that it’s easier to become lonely and isolated. You just become another figure in this huge crowded sea of faces, with everybody racing around doing their own thing. Unless you’re extremely brave and confident, you can’t just walk into a bar and wander up to random strangers to try and make friends that way. So you have to find some way to stand out from the crowd a bit.

Initially I figured that, as I would have to get a new job in the city, that could be a good springboard for getting to know some new people there. I have over 12 years of experience in my current role, and I knew I would get good references, so hopefully it wouldn’t take too long to find a position of some sort somewhere. Then I would be able to see how I got on with my new colleagues.

But no – as it turned out, my employer in Devon was very keen to keep me on, so offered to retain me as a homeworker. And that was fine by me. I like my job, and I was only too happy to have the job security. So they installed a broadband line in my bedroom in our new house, and that’s where I’ve been working ever since. Sure, I miss the camaraderie a bit, but we keep in touch on the phone and email, I go down to visit them every so often (including for Christmas lunch later this year), and they’ve even sent me cakes in the post occasionally!

This, however, now doubled the risk of isolation and loneliness on my part, because I wouldn’t be having any social interaction with people in London during the week, as well as not knowing anybody at weekends. So it was vital that I found another way to try and socialise with people.

Non-Disabled Social Groups

So I did what everybody does these days when they have no clear idea what to do – I went on the internet. I did as much research as I could in advance of the move, finding all sorts of websites offering guides to London life, things to see and do, museums, galleries, theatres, transport, news, etc. I built up a good selection of bookmarks in my browser, signed up for some of their email newsletters, followed some of their pages on Facebook, and even joined Twitter so I could follow the relevant accounts there as well.

And in amongst all of that, I started to find out about a few social clubs, where complete strangers can go to organised, hosted events and have some fun together. Not for dating, just to be social. And these are clubs for ordinary people, not specifically for disabled people. The most well known of the social sites is probably Meetup, where there are groups on practically every activity you can imagine all over the country, but there are others too.

The great and important thing about these groups is that everybody is there for the same reason as you – to meet new people and have some fun in the process. So you’re all in the same boat, regardless of whether you have a disability or not. Everyone there wants to be sociable, whether it be starting a new social circle or expanding their existing one, that’s the whole point of it. So, certainly in theory, it sounded like a great idea.

One site I found myself particularly drawn to was called Thinking Bob. They’re not part of the Meetup site, this is a completely separate company. And there are other companies offering social events for strangers in London too – this isn’t an advert for Thinking Bob, and they haven’t asked me to write or talk about them. It’s just that they happened to catch my eye the most, and have become a significant part of my story.

Thinking Bob run a wide variety of activities, including quiz and game nights, walk and talk socials, restaurant outings, art tours, escape rooms, and all sorts of other things, the main aim being to get you thinking and having fun, so you’re not just having to rely on small talk. You can all take part in an activity together, one that you have a shared interest in or curiosity about, which helps to generate conversation and interaction.

So I really felt that I could do a lot of the activities, or at least give them a go. And there was plenty of information on their website about them, which was good. I especially liked the fact that they have dedicated events for new members, called Signature Socials. Generally, any members can offer to host events, but Signature Socials are hosted by the Thinking Bob staff themselves. And it’s mandatory for new members to go to one of these. That way, the staff can meet you as a form of verification, you get to meet them and can ask any questions you have, and they can help to settle you in and meet people. Some existing members also come to these events as they like to meet and welcome newbies too.

So that sounded like a nice and safely organised way to dip my toe in the water. But just to be sure, I sent them a DM on Twitter one evening to explain that I was visual impaired, to see if they had any issues with it. They immediately replied to say that was absolutely fine, and they looked forward to meeting me. The quick response they gave was good reassurance, especially as this was around 11pm at night! Of course, a small part of me thought that they had to say that so as not to appear discriminatory – it was still no guarantee of a good time necessarily. But it was kind of them nonetheless, it felt genuine.

So I signed up and put my name down for a New Members Drinks evening. And I made sure I knew where it was, by using Citymapper to tell me how to get there by Tube, and Street View to figure out the walking route from the station. The last thing I wanted to do was get lost. The fact that they pick venues close to Tube stations is also good, so they’re easy to find, and it allows me to feel safe arriving and leaving.

The tricky part when it came to navigation, I thought, could be to find them in the pub itself. I didn’t know if I would be able to see any signs, and I didn’t want to keep asking lots of strangers if they were part of the group. But that wasn’t an issue in the end either, as Thinking Bob always reserve a room or an area of the pub for these kind of events, as well as for things like quiz and game nights. So all I had to do was find the stairs in this instance, and in the room at the top, everyone was part of Thinking Bob, so that was nice and easy.

That would all be for nothing if the social aspect didn’t work out though, and I was naturally nervous about that. This was my very first time meeting any strangers at all since I arrived in London. Would other members be comfortable with a visually impaired person around? Would they be willing to engage me in conversation, or would they avoid me out of fear or awkwardness? Would they find me interesting company in general?

It turned out there was nothing to worry about. As soon as I entered the room, I was welcomed very warmly. I got myself a drink, started saying hello to a few people, and within a couple of minutes I got chatting to one guy in particular, called Neil. We sat down at a table and ended up nattering for a good couple of hours at least, during which time we were joined by the event hosts for a bit, as they were mingling with everybody, plus a few other new members, and also a few existing Bobbers too (as the group members call themselves). So it was a lovely atmosphere. Everyone was very friendly, and I settled into it more easily than I thought.

And so, since then, I’ve been to a lot more events with them. I’ve been on a treasure hunt race around the Tube, played Cards Against Humanity, got out of escape rooms, learnt how to do cryptic crosswords, had walking tours in parks and museums, chatted to people over curries, steaks, pizzas and pancakes, and taken part in more quiz nights than I can count (one of which I was on the winning team for). And along the way I’ve also tried a few activities with a couple of other groups – a Dirty Scrabble speed dating night and an adult spelling bee with Smudged Lipstick, and a gaming night with the Comedyopoly group on Meetup.

Going to events like this gave me a lot of confidence as well as enjoyment, which was really valuable so soon after moving to the city. Now I knew that I could go out and have a good time with complete strangers in a safe, organised way, feeling part of the group and enjoying myself. And my visual impairment wasn’t a barrier to me doing that.

Sure, my sight may limit me occasionally, but it’s never been a major issue. For instance, I’m no good during visual rounds at quiz nights (e.g. picture, video or model-making rounds), and escape rooms have also been visually challenging (which I expected them to be, but I wanted to try a couple anyway). But in all those cases, my fellow team members have been fine and respectful of my limitations, and I’ve always been able to answer questions or solve clues that the others weren’t able to get. So I’ve always been able to contribute and feel a part of the experience, not just someone following along and watching quietly.

So I’ve got on well with everyone I’ve met, and I’m a familiar face to some of the regular members these days. There are different people at each activity, of course, so I haven’t yet interacted with anybody so closely that we meet up as friends outside of the events. But that wasn’t the aim or my expectation when joining them. I just wanted to meet people and have a good time, and this allowed me to do that.

So that gave me a good starting point. Most weeks, if I had nothing else to do, there would usually be a social event going on that I could sign up to. Plus it gave me more confidence to go out on my own as well – because now it was just one option, not the only option. It’s a big difference. That now meant I had variety, I had choice. And that was important.

Visually Impaired Social Groups

Then, as Mum and I settled into London and got ourselves registered with the local social services, I also found out about the local visually impaired groups that were available. The Thomas Pocklington Trust oversees many groups for visually impaired people in the capital, and the nearest one to me is the Visually Impaired People of Newham (VIPON), which is part of East London Vision (ELVis for short – best abbreviation for a group name ever). So I signed up and joined them.

VIPON members meet about once a month, sometimes for a general get-together, and sometimes for special outings. And there are further events held by the wider ELVis group as well. So I’ve already been on a touch tour at the Natural History Museum, been a spectator at the London Marathon, had lovely walks around London Zoo and Richmond Park, taken part in a music and drama workshop day, and been to a fundraising event with a quiz and karaoke.

So I really enjoy going to these events. Because the group is for visually impaired people, you already have something in common with everyone else, and the events are specifically designed to be very accessible for people in our position. So they’ve been a great addition to my calendar, and I’ve made some very good friends there.

A more unexpected source of social interaction has come about by going to events organised by VocalEyes, because they’re not primarily a social group. They’re an organisation who organise audio described and touch tours at museums, galleries and theatres. These tours are really interesting, engaging and immersive, helping to bring things to life and enabling greater understanding of their appearance and context. For instance, I’ve been to tours at the British Museum (such as the Hokusai exhibition), The Museum of London Docklands (for the Sailortown exhibition), the Royal Academy of Arts, St Martins Theatre (where I saw The Mousetrap), and various buildings during the recent Open House Weekend.

But not only are they fun, they’ve also proven to be a good opportunity for a bit of networking as well, which I hadn’t anticipated. You end up talking to the other visually impaired people and their partners or carers, because you already have something in common, and many regular visitors to these events enjoy saying hello to anyone new. So I’ve made a couple of friends who I’ve then gone on to see outside of those tours.

Most significantly so far, I’ve become a member of South East London Vision (SELVis) after meeting their activities organiser on one of these tours. I had assumed that I couldn’t be part of their group, given that I don’t live in their area of London and am already an ELVis member – but as long as I’m happy to travel to their events, they don’t mind at all. And south east London isn’t too far from east London, so it is within a reasonable distance for me. So I’m hopefully going to a couple of their events soon for the first time, it’ll be great to meet them.

So I’m now a member of quite a few social groups, and they’ve proven to be great ways to socialise. They’ve really helped me to settle into the city and feel very comfortable here, and it’s given me plenty of choice of things to do.

Social Media

But on top of all that, my online research prior to the move had also taken me in another direction. Out of sheer curiosity, I had typed in my eye conditions – aniridia and nystagmus – as well as terms like visual impairment in general, to see what would come up. After all, I figured it could be useful to seek out resources in case I needed any help and advice. I knew of organisations like the RNIB, Scope, Aniridia Network and Nystagmus Network of course, but now I was digging more deeply, I found far more than that.

In particular, I began to discover a whole community of visually impaired and disabled bloggers online, writing posts and making videos on a wide variety of topics. On the subject of disability, they were raising awareness of their conditions, giving advice for interacting with disabled people, tackling discrimination and accessibility issues, explaining the support they needed and any struggles they had in getting it, and so on. But they were also posting about their lives in general and the things they enjoyed, like fashion, beauty, photography, technology, music, nature, film, holidays, etc.

This was fascinating to me, because I hadn’t realised that a community like this existed, purely because I’d never looked before. I could relate to a lot of what was being discussed, and found the posts and videos very entertaining and interesting, and often amusing or touching. They were also getting very positive responses, including from people with similar conditions who loved seeing content they could closely relate to, and parents who were greatly reassured to see that their child with a similar condition will still be able to lead a good life as they get older.

So I started following a lot of people, by subscribing to their blogs, Youtube channels and Twitter feeds. And then, eventually, I had a go at starting a blog and a Youtube channel of my own, just dipping my toe into the water with a few posts about my eye conditions and my experiences. There was no harm in giving it a go, I thought. Maybe I could make few online friends and have a small support network there.

But if I didn’t make any connections that way, or if I got bored of it, or if people made it clear they hated it, then I could just delete it and there would be no harm done. I expected something like that to happen too. Being noticed in among millions of people online is as daunting as being noticed in the middle of a huge city like London. I really didn’t think that my ramblings would be as interesting or as useful as the amazing blog posts and videos I’d seen others create. Still, it was worth giving it a go just to see.

And, to my surprise, I soon started to get noticed. As I gradually posted more and mroe, as well as commenting on a few people’s blogs, videos and Twitter posts, things started to happen, and have continued to happen. In particular, it’s already resulted in me making a couple of friends that I’ve gone on to meet in person.

The first person to contact me was James Buller from the Aniridia Network, who got in touch when my blog caught his attention. We got chatting, and I ended up meeting him and a few other people with aniridia after the Sight Village event in London, which took place before I moved. Then, after our relocation, we met again after an event at the British Museum, and spent a few hours in the pub getting to know each other.

So we’ve become good friends, and I’ve been helping him with a few bits and pieces for the Aniridia Network as and when time allows. Most notably, I produced the promotional video for the first ever Aniridia Day this year, with his input and assistance. I was very pleased with how it came out, and the day was a big success, so will be taking place again next year.

More recently, the second person I’ve met is Emily Davison from the Fashioneyesta blog. She was one of the very first people I came across when I discovered the online blogging community, as she has nystagmus like me (though caused by a different underlying condition). So I’ve been a fan of her content for a while, and assumed that was all I’d ever be, leaving a few comments on her videos and following her social media pages, just like everyone else. And that was fine by me. Her content is a joy to watch and read, and she was a big inspiration for me to give blogging a go myself.

Then, when she opened up community contributions for captioning on her videos in return for shoutouts, it was a good opportunity to give something back as a supporter of her work (the same reason I helped James with the Aniridia Network and backed the All The Stations project). So I just captioned a few of Emily’s videos, not wanting to hog the process. But after a couple of months or so, it became apparent that nobody else was doing it, so I thought I’d do some more. It turned out to be a good use of my spare time, especially as I got more proficient at it and figured out quicker ways of doing it. In fairness, Living Able has since captioned a video as well, but for the most part I believe it’s just been Emily and I doing it so far.

Emily then got in touch directly to thank me and, on discovering I was moving to London, offered to meet up and show me around some of her favourite places. Which was quite a surprise, and of course I accepted her generous offer. And so, after chatting on and off for the best part of a year, we met up at Knole Park in Sevenoaks. We had a great day together, and have already been on a Jack The Ripper tour and dined at a vegetarian restaurant since then. It’s been extremely kind of her to give up her time like that, as she leads a very active and busy life. So I’m very grateful to her for that, and very happy to have made a new friend there.

And finally, in addition to all of that, I’ve also been asked to make various guest contributions, including posts Scope’s community forum (about bullying) and East London Vision’s blog (about living with aniridia), while the RNIB have shared a few of my posts and have asked to feature one of them in a newsletter they distribute. And, most recently, the Nystagmus Network asked me to write an article for their online newsletter about how I was settling in to London – which directly led to the invite to speak at their Open Day about my socialising in the city.

So my experiments with blogging and video-making have already been having a number of surprising and exciting consequences, which I’m both pleased and flattered about.

Final Thoughts

In all of the above cases, I’ve had to push myself out of my comfort zone a bit, in order to do things that I’ve never done before, and may never have considered if I hadn’t ended up moving to the capital. The idea of walking into an unfamiliar pub to meet an unfamiliar group of strangers, especially in such a huge city, wasn’t something I’d have imagined myself doing in the past. Likewise, creating a blog and a Youtube channel to share lots of detail about my life, wasn’t a temptation for a long time.

But with the situation I found myself in, I had to do something if I didn’t want to become lonely and isolated. So I did my research, found the options that intrigued me, then took a deep breath and gave them a go. It wasn’t an easy thing to do at first, but the more I’ve been trying these things, the more comfortable it’s become. Sure, I can still be wary of some new things, and I’m always a bit nervous around new people at first, it’s natural and always will be.

But the fact that I’ve been making so many new friends and acquaintances, and have had so many enjoyable new experiences, has been a valuable boost to my confidence. And it feels like things are still unfolding and emerging, so there’s still much more to discover yet. My time in London has started very well, far better than I expected it to, and I’m excited to see how things will continue to develop.

So if you’re looking to socialise with new people, that’s my advice – to look around, find things that interest you, and then give them a go. You should be able to find things by making good use of search engines, Facebook groups, community forums, disability sites, social sites like Meetup, etc, as well as offline resources like friends, family, acquaintances, groups you’re already a member of, disability organisations in your area, social services, etc, you should be able to find things. I have a whole page listing lots of disability information sites, some of which may be useful to you if you want to check them out.

I know it’s easier said than done and can seem very daunting. It can be very hard to meet people at first, socialising with strangers can take a bit of getting used to, and it does take time to build up friendships and confidence with new people. Not every friendship will necessarily work out either, there may be some trial and error involved. And trying to dig through all of the information available can be daunting too. It can all be very uncertain and overwhelming at first.

But it’s well worth the time and effort, and giving yourself that extra push, believe me. Once you get the ball rolling, and you start interacting and having fun with new people, and you realise that you’re capable of more than you perhaps thought you were, it becomes a lot easier the more you do it. And you never know what surprises might be in store after that. I certainly didn’t, but it’s been a lot of fun finding out, and I’m very much looking forward to seeing what the future holds. 🙂