A researcher has found that for people with aniridia, being online, in relation to their condition is:

• transformational
• empowering
• liberating
• gave a feeling of solidarity
• and is ever evolving

During the past year, a Cardiff University masters student studied the experiences and attitudes of adults with aniridia towards internet and social media use.

She recruited several participants from our members after talking about the study at last year’s Aniridia Network Conference.

Having completed her work, Emily Sterling was welcomed back to our 2023 Conference Birmingham in September to take us through her findings.

The study reveals how adults with aniridia find the use of the internet and social media transformational, empowering and liberating, enabling them to connect with others and access information. But it also continues to have barriers and limitations, and participants were able to suggest their hopes and needs for the future.

We are delighted to report that Emily received a distinction for her dissertation, and for her MSc Genetic and Genomic Counselling qualification as a whole. So congratulations to Emily, with many thanks for her hard work, and we wish her all the best for her career in going forward. Thank you also to everyone who talk part in her study, ensuring there was a good breadth of experiences and ideas.

You can see Emily’s presentation in the video, below which is the transcript, and you can read more about her findings in the following documents:

• Summary of research findings (Word Document)
• Full Dissertation (PDF)

Transcript

[James] The next speaker, I’m really delighted she’s come here today, is Emily Sterling, another one of the Genetic Counselling students from Cardiff University, and whose research a number of you have been taking part in over the past year.

I’m particularly excited about this because hopefully some of the things that Emily has learnt and will be feeding back to us will help influence the kind of services that we deliver, particularly online through social media and things, to you to make the Aniridia Network better for all of us. So, Emily.

[Emily] Thank you. Just wave if you can’t hear me at the back and I’ll shout.

Hi, I’m Emily. Thank you so much for having me here to speak today. Some of you may remember that at the last Aniridia Network conference, like Helen, I was recruiting for my dissertation research project.

And for those of you that I’ve not met before, this project was a project that I did in the last year of my Masters in genetic counselling. And I chose to work with Aniridia Network for this research project. And just this summer I have finished the research, submitted the dissertation and finished the Masters.

So thank you very much for having me back this year to present the findings of my study. I feel really, really fortunate to have partnered with Aniridia Network for my project and I’m looking forward to presenting my findings to you.

So the study had a lot of interest and I know some of you here today took part in the study. I’m really, really grateful for your engagement and your enthusiasm for this research and I hope that you find the findings as interesting as I did.

So the title of the study ended up coming from a quote from one of my participants, which I felt expressed a feeling of community, which came across very, very clearly from everyone that I spoke to. In the end, the title of the study was ‘Knowing that you’re not on your own’. It was a qualitative study exploring the experiences and attitudes of adults living with Aniridia towards internet and social media use.

So I’ll explain a little bit more about the research, how it came about and how it was conducted in a moment. I will then provide some de-identified and anonymised information about the wonderful people who took part in the study, to provide some context to the results before I present the main themes which arose from my research and my interpretation of these themes.

Depending on how much time we have towards the end, I would like to have a bit more of an interactive discussion with yourselves about anything that stood out for you in the research and maybe a bit of a reflection on these findings. I know what stood out for me, but I think it might be quite interesting to have your views as well, before I give you an opportunity to ask any questions.

So a bit of context about the study. When I started my Masters degree, I was working in ophthalmic imaging and I found it very interesting how some of the patients I was working with were using technology to support their lives.

After speaking to the trustees of Aniridia Network, I found out that the support group had actually grown out of a mailing list in the late 90s and early 2000s, towards the beginning of mass general use and access to the internet. And I was really curious to find out and understand how individuals with Aniridia use the internet, which of course nowadays heavily involves social media too in relation to their condition.

Initially, I thought I would mainly focus on interviews of people under the age of 30, but after speaking to the trustees, I removed the upper age limit. And I’m really, really glad that I did, because I ended up with a couple of people across lots of different age brackets and at different stages of their lives.

And I feel that the study greatly benefited from being able to speak to both people who were grown up with the internet, and people who had only had access to the internet and social media in their adult lives. I found the breadth of experiences I ended up with was really interesting to hear and incredibly important to represent as well.

So for anybody who didn’t take part in the study, the way it worked was the study was advertised through Aniridia Network and anybody who was interested in the study got in touch with me to express their interest in taking part. We then arranged a time for that person to be interviewed by me about their internet and social media use related to their Aniridia.

Most interviews were done through video call, but participants were also given the option of doing their interview over the phone, or in person if we could agree a time and a place that worked for both the participant and I.

When the interviews were conducted, they were audio recorded and afterwards I transcribed everything that was said in the interview and these interview transcripts then became the source of my research data. Which means that I went through the transcripts looking for patterns in the things that people were saying, or the information that I thought was interesting or that provided insight into how individuals use internet and social media in relation to having Aniridia.

So this is the first time that I’ve done this sort of research and it’s obviously very subjective. So while I based my interpretation of the data on the information in transcripts, it was my own interpretation of the data. And I did find it really interesting working out how to tell the story of the data and figure out how I thought it fitted all together.

So before I go into the data and the different themes I interpreted from doing the interviews, I just have some quick demographic information about my very kind, generous and enthusiastic study participants who I honestly cannot thank enough for taking part in this study.

In total, I had emails from 15 people expressing their interest to take part in the study. Of those 15 people, 10 people went on to arrange an interview and complete an interview with me. And while this might not seem like a lot of people for the type of study that I was conducting, 10 is actually quite a high number. Especially as in total, between my 10 participants, I collected around 17 hours worth of interview data.

Of my participants, I interviewed 7 women and 3 men who were quite evenly distributed across my different age brackets, which ranged from 18 years old to over 65. My ratio of sporadic aniridics to aniridics who were born into families with other affected family members was also quite even, with 6 sporadic aniridics and 4 with other affected family members. The participants were spread out across the UK, with participants from different parts of England, Scotland, Wales, Northern Ireland, and I even had one participant from the USA.

Something that was really interesting from having participants from all over the country was the difference that living in an urban or rural area seemed to make to some of my participants’ answers, especially if they had moved from living in an urban area to a rural area or vice versa at some point in their lives. I will just quickly mention that I was only interviewing individuals who were affected by Aniridia for this study.

So, as I explained before, the key themes that I believe explained or told the story of the data, that came from the interviews I conducted, were the idea of the internet having a transformational effect on some aspects of the lives of aniridics I interviewed, a contribution to a feeling of solidarity, a feeling of empowerment, and similarly feelings of liberation.

Possibly most interestingly, having interviewed people across a range of ages and experiences, was a sense of how people’s use of the internet had changed over time and how they hoped or could see it further evolving in the future. This is also where I felt some of the accessibility barriers and issues came up a lot too.

So I will now talk about each of these themes in turn, how I felt the data contributed to my identification of that particular word to encompass that theme, and with some quotations from the participants that I felt conveyed something interesting or added to how the individuals that I was interviewing use the internet and social media to do with their Aniridia. So there was a lot of overlap and crossing over of themes.

Again, this was just my interpretation of how I made sense of the data from the interviews, but you might have different ideas or interpretations, which I’m hoping we’ll have some time at the end to have a bit of a discussion about.

So, as I’ve mentioned, one of the dominant themes I identified amongst participants was describing how the internet and social media had had a transformative effect on participant lives by facilitating their ability to make and maintain connections and discover and publicise activities, so that they reached more people.

The first sub-theme was Connecting, that contributed to the overall theme of Transformational, and I felt that this was exemplified by the following quote:

“We connected with each other and a whole lot of other people. If it hadn’t have been for social media, then we couldn’t have done that. It was such a morale booster. Even if the person’s not on social media, sometimes they’re on the internet and you can contact them.”

This quote was from a participant talking about using the internet and social media to arrange a school reunion and how much it had meant to the people who attended that reunion to be able to reconnect in this way.

There were also examples in the sub-themes of people moving cities or countries, and being able to use the internet and social media to find out and help them to build connections, in a new place and the way that this impacted their confidence.

The accompanying quote that goes with the sub-theme of people moving cities or countries and being able to use the internet and social media to help them to meet other people was:

“At that point, it became apparent that I needed to completely build a new social circle, form new connections and stuff like that. That was really when I started using social media. I hadn’t used it heavily up to that point.”

Activities was a sub-theme that contributed to the overarching theme of Transformational, with participants enjoying finding it much easier and much more accessible to be able to search for events online, especially if they could not read information on posters or in community settings as easily as their peers, which was exemplified by a quote where a participant was saying:

“Obviously, I don’t see posters in community places. By using the internet or social media, you know, I can find loads of different events.”

This seemed to help enhance the wellbeing of participants who mentioned it helped them to have the confidence to socialise and try new activities.

Others mentioned enjoying being able to research activities before showing up, because it reduced the number of times that they were turned away when they were attending something, helping them to feel that things were more doable to them.

Along similar lines, participants mentioned that they valued sharing accessible events and activities through the internet and social media, so that others could find and enjoy them too.

Although this was a lot easier for participants living in well-connected urban areas, and more difficult and sometimes frustrating for those living in more rural areas without access to reliable transport, who could find things that they could do but were not able to access them. And the accompanying quote that I felt summarised those:

“I can find out whether I can go and do an activity without having to turn up and then be turned away. It just gives me a lot more freedom, I think, knowing what to expect. You get the idea that this is doable.”

So the next theme was Solidarity, and I think it won’t be a surprise to hear that one of the most dominant themes that emerged from interviews was the importance of finding solidarity through connecting with aniridia or visual impairment communities online. And to me this seemed to be particularly the case for participants who were sporadic aniridics.

Support from finding communities online helped them to feel less isolated and better able to cope, through finding a sense of normality and acceptance, by speaking to others who could relate to their experiences.

Geographically isolated participants seemed to be particularly appreciative of having access to online communities, where they could interact with others who understood their experiences, and provide a sense of support, solidarity and belonging to a bigger community.

Using the internet and social media to combat isolation was something mentioned by the majority of participants, either directly as something that they had experienced, or indirectly as something others had spoken to them about, as exemplified by the first quote shown here, which is:

“Social media in particular, but also the internet, can help alleviate that isolation and find other people who have similar issues.”

A shortened version of the second quote, which is: “It’s just reassuring knowing that you’re not on your own”, ended up becoming part of the title of the project. And this was because it summarised a general feeling expressed in every interview that I conducted, that with Aniridia being a rare condition, there was a very strong feeling of solidarity in being able to find and speak to others who also had Aniridia. Another participant expressed feelings of excitement, knowing and speaking to other people who had similar lived experiences to themselves.

So something that I found interesting was how some participants talked about using the internet and social media to speak to other people when things were going on that their visual impairment made it challenging for them to join in with, such as events at night, and how they use this as a distraction, but also a coping mechanism, so that they were not focused on feeling left out by sharing and receiving support from others who understood how they were feeling. And I feel the following quote captured this quite well:

“Being able to connect and interact on a social media page where other people have a similar difference, it gives you the opportunity to speak your experiences out loud and to listen to other people’s experiences and learn from that and grow strong.”

Particularly the sporadic aniridics I’ve interviewed described what I felt was a sense of relief in being able to find and connect with the Aniridia Network or visual impairment communities, to help alleviate feelings of isolation and difference, as exemplified by the following quote:

“In my teenage years, it was quite hard to accept having a visual impairment. Being the only one in my family with a visual impairment, I use social media for connecting with others who have visual impairment.”

Finding others really seemed to contribute to an overall sense of confidence and normality, which seemed to have a positive effect on wellbeing for most of the aniridics I interviewed, as exemplified by the following quote:

“It gives that bit of normalcy again. You don’t feel like you’re the only one, and there’s a surprising weight to that, you know. You can feel like a bit of an outcast, even if you’re doing well, and you’re having a good time. There’s just something in the back of your mind, and then just knowing that there’s actually what feels like a big community out there, you realise, I’m far from the only one.”

So the next dominant theme that emerged from the interviews was how the internet and social media have become an essential tool for participants to empower themselves and other aniridics, as well as support parents of sporadic aniridics and advocate for the condition in an individual capacity, or as part of a group or community.

The sub-theme of Self described how participants spoke about having access to information, both scientific information, but also experiential information which, as Aniridia is a rare disease, many participants described how useful this information was to them, to help build a full picture when deciding on things like cataract surgeries and equipment, where very little if any Aniridia-specific information was available, as exemplified in the following quote:

“If I am unable to find the information in a search, I will ask for other people’s experiences of doing the same thing.”

Something that nearly everyone mentioned was the support and encouragement individuals had for each other, with many participants mentioning that this was particularly felt in the Aniridic Family Facebook group, and could be seen by the empathy and speed with which members of this group replied to people’s posts calling out for help and support in this group, particularly where a new diagnosis had been made and caregivers of a newly diagnosed person were concerned about what this might mean.

The quote: “Social media feels like this safe space where you can come together and share your stories and worries, or share information or whatever, you know, because not everyone is able to get out that much.”

And another quote, which exemplifies more specifically the support that was felt in the Aniridic Family Facebook group, was:

“They just get like, bam, 60 responses, and somewhere in the responses, they are finding people and feeling a lot better about the diagnosis. It’s just really gratifying to be a part of that.”

Although some participants preferred to keep their visual impairments separate from their personal social media, again the internet and social media, to an extent, was able to help facilitate this privacy, providing choice in expression of aniridic identity.

So advocacy was expressed, I thought, in two different types of ways during interviews. The first was by doing something like volunteering or working for a support group or charity, or raising awareness of accessible events, or some of the needs of visually impaired people. The other, as shown in the following quote, was providing support to the parents of children and other people who post a message seeking support. And the quote that I felt exemplified this was:

“I will say, please don’t wrap your child up in cotton wool, you know. Let it be independent, let it learn from its mistakes.”

Liberation was the next theme, which I felt reflected the fact that most participants contributed examples in their interviews that gave an overwhelming impression of internet and social media having a liberating effect on different aspects of participant lives, such as their independence, transport, work and education, and an ability to have access to this information.

This theme I found especially interesting, as it was probably the most balanced theme in terms of participants reflecting on a number of challenges, as well as some of the increased freedoms experienced through using internet and social media presented them with, particularly regarding access to information.

So access to transport featured heavily in many people’s interviews. This was particularly interesting for me, as I did not anticipate that it would have been as prominent in interviews as it was. But it seemed strongly related to the ability to travel using the internet, planning routes, and the use of apps in general for the same purpose.

The use of the internet and social media was also described by participants as helping, not just in travel, but also in other ways that help them to maintain their independence. The quote that exemplified this was:

“Use of the internet, particularly for travel, does play a huge part in my ability to be independent. It gives me the confidence and makes me feel more independent, knowing that before I’ve even gone out the door, I know where I’m going and I know where I need to be. So that’s definitely encouraged me in turn to go out and do more things. It adds to my confidence of being able to remain independent, completely independent, much longer and much more successfully. I’m not saying that I don’t have some difficulties, but technology does go a very, very long way to helping with those difficulties.”

Use of the internet and social media for personal educational development, particularly long distance, was also something which emerged from interviews, and through researching assistive devices to help with accessing information at university or in school. For example:

“I definitely use the internet a whole lot now. Because I’m an online student, it’s convenient. Because of course, being visually impaired, I can’t drive. For people with disabilities, it definitely makes your life easier and more convenient.”

Again, the experience of education was enhanced by participants asking for recommendations, which they could use to narrow down what might help them out and then to see if that assistance helped them or not in the way that they wanted:

“On Facebook groups, for example, I’d ask for advice on what technology I can use that might benefit me at university.”

Information was interesting as participants generally had a relatively positive outlook on their condition and what they had been able to do and achieve despite having Aniridia. But they felt that this wasn’t reflected very clearly to people without any experience of the condition, particularly those who had a newly diagnosed child or new diagnosis themselves when they Googled the condition.

Although some participants expressed that they would prefer a more accurate portrayal of their condition online, they did also express that they felt having the information was more important than risking the information not being represented faithfully. Particularly for participants who in the past would not have had access to any information about Aniridia, they felt that it was important that they had this information, or that they would have liked to have had this information in the past. And the quote that exemplified this was:

“I think it’s good to have knowledge. I remember as a young adult there wasn’t information about Aniridia, there just wasn’t for the general public. Yes, it was in medical books, but we didn’t have access to that information.”

So I felt that the final theme, Evolving Use, summarised how participants felt their personal use of internet and social media has changed over time and what this has meant for them. I particularly focused on how development and mainstreaming of accessibility software has impacted participants, as this was mentioned by all participants.

Participants also talked about some of their hopes for how internet and social media may continue to develop and evolve to be better at addressing some of their current needs in the future. Some of these suggestions have already been discussed in some of the topics today.

So I found how participants described the evolution of their internet use and activity over time really interesting, and in some cases a bit bittersweet, where participants had spoken to friends and family members, or even the participants themselves described how they missed out by not having had access to the internet and social media earlier on in their lives.

Other examples, like the one in the following quote, show how the internet and social media has massively increased the reach and capacity of voluntary organisations like Aniridia Network, which is in part the reason that we’re all here today:

“Internet has allowed our organisation to exist. For an organisation that didn’t have any cash, being able to use free cloud technologies allowed us to grow as a network and with people from all over the UK.”

“I was very wary and reticent about getting involved in online banking because security issues aside, I was not convinced it was going to be accessible enough for me to be able to use.”

Which leads us on nicely, by that quote, to Accessibility, which was again another interesting sub-theme that some participants, particularly younger ones, were seen to really benefit, and mention large improvements with access features being built into the technology that they use, helping them to feel included and considered.

With the caveat of this is a generalisation – some of the participants from older generations have more reservations, particularly about ease of use and inaccessibility, which I thought was particularly interesting, but not unexpected as a finding. So this quote exemplifies this, but it was from a younger patient:

“Sometimes you end up in countries that don’t really have much infrastructure. I feel more disabled there than I do in my day-to-day life when I have to do really complicated things and make loads of adjustments, but the internet is there for me, so it helps significantly.”

Accessibility was quite contrasting, with participants giving examples where if they were having a difficult day anyway, it could be very frustrating to hit another barrier, such as an inaccessible PDF, and the cumulative experiences of feelings of exclusion could become the final straw that day, which seemed to have the power to really knock someone’s confidence and negatively impact wellbeing. Whereas when used well and properly, the aim of this technology is to improve wellbeing, and that wasn’t always the case:

“At the end of that day, I said to my boss, I have never felt so disabled. That was the first day when I’d actually really struggled to get things done. You just think to yourself, for goodness sake, if it wasn’t for my visual impairment, I could see this fine. You know, you feel different, you feel left out, that you’re excluded.”

So this brings us on to some of the ideas that participants expressed as ways that they hoped that the internet and social media would improve in the future with technological improvements, and these were to be used to increase awareness, and that was spoken about in a few different ways, specifically in terms of Aniridia, but also in terms of awareness of just visual impairment in general.

Younger participants were very keen for things like TikTok and Twitter and videos and YouTube to be more available and accessible, I guess recommended to people that they come in contact with on a regular basis, who would benefit from knowing more about Aniridia.

And then some participants were more keen for increasing awareness through leaflets or increased availability of accessible websites and leaflets online. More educational internet and social media content was kind of the heading that I put that under.

Artificial intelligence was also mentioned, I thought that was quite pertinent with the strikes in America at the moment. One of the participants had mentioned that she felt it should be mandated, that things could be read using AI, or she said she would love to go to the shops and be able to pick up a tin and have her phone, scan the phone, and it would just read it to her. She said that would be fantastic, and I was thinking, yeah, that would be amazing. But it’s interesting that it coincided then with the writer’s strikes and the AI strikes that were going on in the States at the same time.

So a cohesive area for information was also mentioned. Someone mentioned Aniridia-pedia, which was backed up by other participants who spoke about actually there’s a lot of medical information online, but there’s no one place where you can have all of the support information that you need that come with having a disability and benefits, and where you go to depending on where you are on the spectrum, where you are at your different stage of life. And they thought that, in a roundabout way, something like Aniridia-pedia would be very helpful and useful for the community. And this was this idea of a cohesive area for information.

As exemplified in earlier quotes, this idea that actually you don’t always have access to technology, and universal access is really important, particularly when you need it so often. And I guess even things like charging banks, battery systems, and just making the world a more accessible place.

So whether technology will actually be able to solve these problems and further enhance the lives of aniridics will remain to be seen in the coming years. And as we’ve already heard about today, it definitely cannot be the only answer, and that the support that is required to use it is absolutely needed to back up further integration of technology into your lives.

So in terms of questions, if anybody has questions it might be a good idea to combine questions, and anything that was interesting to you and have a discussion about that at the same time, if that sounds like a good idea James? Yeah? Fantastic. So does anything stand out to anyone, and does anybody have any questions? Fire away.

[Person 1] I think the thing that stands out is the social media, particularly taking away the added ability for social isolation and people with visual impairment across the board, not just with aniridia. I think that the use of the internet is very useful towards that and can be done both audibly and visually for those who want to use either or or both.

[Emily] Yeah, absolutely. Something I found interesting, and commented on in the body of the dissertation, was that there was almost like my participants were saying things about becoming increasingly reliant on social media, but actually that was facilitating their independence. And that was something I found interesting in terms of the kind of independence, was that people weren’t just sitting at home on their computer using social media, they were using it to find things to facilitate them to then go and do things, which there wasn’t really anything about in the literature.

[Person 1] That thing about connecting with other people, whether it be people that you knew in the past or in the future, or people that you’re yet to meet. But it allows you to connect and meet other people, and in particular it allows you to meet other people that have got similar issues and ideas, so people can easily get together that way and build relationships initially online, but hopefully in a secure and safe environment, and then take it that step further to maybe make events and so on and so on, and meet in groups.

[Emily] Absolutely. I think there is a quote somewhere in my dissertation about how one thing leads to another and it just grows, it’s the idea of a network. Yes?

[Person 2] The thing that strikes me actually is the access to information, it’s just incredible. And it surpasses, sometimes it can surpass, what’s achievable over the phone, and a really good example is coming here today.

So I booked Abi’s Megabus ticket and there was a problem. So I instantly called up the number and was put on hold and was waiting on hold, and while I was waiting on hold I spoke to the social media team from Megabus. And I managed to get through to a lovely lady in Glasgow who said “Oh yes, I can’t seem to find the booking, I’m not really sure what’s going on, blah blah blah, you’re going to have to email this particular email address, meanwhile make a separate booking, you may or may not get your ticket back if it has been successful, your booking.” It was all this complication.

Meanwhile the social media team from Megabus gave me a very definitive answer that was very helpful and very quick, and it completely outstrips what that poor lady in Glasgow was able to give me. And access to that information was really really significant, because it meant that I could solve that problem much faster and in a much better way than I would have, had I not used social media, had I not used the internet. You could also say though that the access to the number for Megabus in the beginning I got that through the internet.

So it’s this access to information. And again, even through my job, yesterday I had someone come through to me who was visually impaired, looking for opening times for their local station so that they could get assistance onto the train. We’re all using social media to get the answers we need in a much quicker and much safer environment I think, and yeah, it’s fabulous.

[Emily] Yeah absolutely. And it’s standardised, the answers are I guess more straight, that’s why they’re more straightforward. But again we get back to the answer of there does need to be almost a support package that matches how comfortable and confident people are using it. Yes?

[Person 3] Okay, a couple of little things. Talking about social opportunities, we were talking about this at work just a couple of weeks ago, and about career progression and stuff like that, and so many people in the room said it’s so difficult when you go into a meeting, because we’re all visually impaired staff talking with each other, and the person who might give you those opportunities is on the other side of the room, you don’t know they’re there, they’re talking to the other sighted people around them, those people get the opportunities because they’ve grabbed that person, have impressed them and done all these different things. So it does actually make things like progression and taking up those social opportunities so much more difficult, when you can ‘t see them in person.

So actually, when you’re able to go on a website or Twitter or Facebook or something like that, and you can actually search for a person’s name and actually write them a message and introduce yourself, or LinkedIn or whatever thing you’re part of, it is so much easier to do that when actually you haven’t got the pressure of that face to face interaction. You can think about what you’re going to say, how you’re going to say it. And although it seems kind of contrived, it’s definitely better than not having any opportunity at all.

And the other thing I was going to say is, I’m not sure if you’ve had an experiment with the Be My Eyes app, because they’ve just introduced a beta version of something called Be My AI, which basically it will take a photograph like Tap Tap See or some of the other ones like Seeing AI. It’s Be My AI, that’s what it is, sorry I’m getting the two apps mixed up. Seeing AI is something which you can take a photograph of something and it will read back the text or tell you what an image is, but it’s very basic.

But the AI one gives you so much more information. So taking a picture of, say, a flowery dress, it will tell me what colour the background is, it will tell me what’s in the background of a picture, even just it’ll say there’s someone’s handbag in the corner and the fact that the dog looks sulky or something like that. And you think just the fact that it’s given you so much extra feedback and information. Because I have to say, living in an audio-only world is really boring, so actually knowing what’s around me in visual terms is really important to me, so using that kind of technology is amazing.

And my final point is there needs to be more education and training and just awareness raising, in terms of developers and people actually delivering this stuff, to make all platforms, all things fully inclusive, because they’re not. Often you get to the end of a purchasing experience, you get to the bit where you have to put your number off the back of your card in, and then you can’t get to that box with a voice or something. And I just want to throw the computer across the room. So that’s me.

[James] Yeah, we certainly have that problem ourselves, I mean Bernie in particular found difficulty using the booking form for today. And it’s really difficult because often there isn’t an alternative, there isn’t an accessible online booking form, or if it is it costs more than we can afford or something like that. So yeah, it’s really, really tricky.

[Emily] Yeah, it’s like the massive highs and lows. It’s so much potential and then you get to some little bit that just throws it off at the end.

[Person 3] It’s actually really annoying when you get to “This is okay”, and you get all complacent and you nearly get to the end. And I was with that booking form, there were just two things, the voice software wouldn’t recognise these particular buttons to press, and it would read them back, but it wouldn’t activate them. And I was thinking “I’m so nearly there, I’m nearly at the end of this process”, and I said lots of swear words! [Laughter]

[Emily] Right, I think James is wanting me to wrap up.

[James] Right, thank you very much Emily, is there anything else?

[Emily] I’m just going to say a very quick thank you to Aniridia Network, thank you to Cardiff University and most of all thank you to my amazing participants.

The dissertation needs to get through an exam board, but I’m hoping to publish it. Of course if I publish it, I will pass on the details to the Aniridia Network, and that will be available to you guys. Again once it’s passed all of the red tape that it needs to go through, then there will also be a summary of my key findings. And yes, that will be made available as well.

So thank you so much and it’s been a pleasure working with you guys.

[James] An A-star I’m sure, or whatever it is.

[Emily] Oh, I don’t know about that. We shall see!

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Thank you to Glen for the video editing and write-up.