Aniridia Network

Haya Hassan is a 25-year-old woman from Wiltshire with sporadic aniridia. She graduated from university 2 years ago and has since been working in different charities, including a major UK sight loss charity. Some of her interests include reading, travelling and getting involved in small DIY projects.

Aniridia Network sponsored Haya to attend the European Aniridia Leadership Academy, an initiative to create leaders out of young people with the condition. It took place alongside the 7th European Aniridia Conference in Stockholm.

At our online conference on 27 July 2024, Haya explained why she took up the opportunity and reflected on what the experience was like. You can watch her talk in the video below, and we’ve included the transcript underneath as well.

Transcript

[Tierney] We will move on to our final speaker of this session.

So I will be handing over next to Haya Hassan. She’s going to give us some information about the Aniridia Leadership Academy experience that she’s been on and also taking part in the European conference. So over to you Haya.

[Haya] Hi everyone. So I’ve been asked to talk about my experience at the Aniridia Leadership Academy.

I attended the conference and the academy at the end of May. Apparently I was the only person from the UK attending it as a young person, as well as Katie and James as trustees. So no pressure but I will try to do my best.

And just to sum up a few words, the academy was a very inaugural event. So it was the first of its kind and it’s not run before.

And I think there were about 11 attendees. Most of the young people, a lot of them were from Aniridia Italy, some were from Spain, a few people from Sweden. And a lot of people travelled a good number of hours to attend the conference, which shows its value and how motivated everyone was to come to the conference.

The academy was split into two and a half days. And I also just want to thank and acknowledge all the organisers, the volunteers who were with us, and of course the facilitators.

So the main facilitators who were with us throughout the whole of the weekend basically was someone called Ben Goodrich and he was the event moderator, I think he’s part of the Aniridia Sweden Committee. And his background is he won a silver medal in the Paralympics. I think he went to Tokyo and he won that in judo. So what an amazing achievement.

And he is also currently working as a project leader in a charity local to Sweden again. And he helps visually impaired people get into athletics, I think specifically judo, but he does other different types of work. And before that his background was in finance and consulting.

So looking at his achievements by a wide variety of things, and he also is running his family, so giving his time and energy towards this was a very generous thing.

Another speaker was Gianmaria (Dal Maistro), I hope I pronounced that right, but someone from Italy and he won a medal gold medal in skiing at Paralympics a few years ago.

And then Matteo (Castelnuovo), he is the vice-president of Aniridia Italy and he was one of the main speakers. He’s a radio host, he’s also a journalist by profession, they have a podcast.

So Aniridia Italy is one of the main or one of the largest national charities among those in Europe, like Aniridia Norway and Aniridia Spain. And they do a lot of things. I’ve been looking into their work the past three days and I was thinking our local charity RNIB, Guide Dogs and they run so many things, they’ve done an enormous amount of work.

And Matteo is also involved in the Erasmus+ programme and that’s running quite recently. So that supports the education, training, and youth and support programmes that are run in Europe. And so he was involved in that. I know the last day of the conference he was staying a bit longer, I think he was staying until Monday, to attend one of the meetings.

They’ve also contributed to a children’s book for aniridia. So I have it here. It made me quite happy actually, looking at this book. I know there are a few books already dedicated to patients of aniridia, but this is what it looks like if anyone can see it.

And I was reading through it and it’s quite an informative book. It also makes me laugh, it’s got some humour in it. The illustrations are great as well. So even though I’m 25 myself, I was reading it and I was like “Oh, I can relate to this.” So they put a lot of time and dedication to that clearly.

They have also gone to museums. They’ve done training sessions with them to make museums more inclusive by putting audio guides in. I think they have a Guide Dogs group, and they run some demo tech sessions to teach people how to use magnifiers on their laptops, and just learning more about accessibility.

And one last thing, I know they’ve done something called Aniridia’s Roots. So that is a conference that I think has been initiated by them, and it’s just dedicated to genetics. So they talk about genetics of different eye conditions including aniridia.

So yeah, those were the main three speakers.

And, oh, actually I forgot sorry, Veronica. Veronica (Tartaglia) is a medallist in sword fencing, also from Italy, she won that. And she gave a small talk about how she got to that point in her personal life.

And yeah, in terms of the conference itself, it was quite interactive. We got to know each other. We did a bit of one-to-ones, we also talked in groups.

For example, we talked about our goals, what we wanted to achieve later in life. There were a wide variety of ages, so some people were 16, some people were 19, some people were at school, some people were about to go to university. So we talked about what jobs we wanted to do, what new subjects we would take on, going to further education.

And we also did some public speaking practice that and I think one goal of that was to help raise our voice and develop our body language and our confidence in general. And with that public speaking there was a Q&A session, so we could practice that, answering questions directly, and working together as a whole.

And other talks, one of my fondest talks was by somebody called Sølvi (Ørstenvik). So she is a committee member of Aniridia Norway, and I really admired her talk for how optimistic she was and how she convinced us to take her similar approach.

For example, she talked about creating an image in our heads and affirmations, so saying that I can do this and this is possible for me. And she said that self-image is such an important thing and not to compare ourselves all the time.

Sometimes that comparison can be good, in terms of competition, but it’s important to remember that we are as good as the next person, whether we have a disability or not.

And once we have that belief in ourselves, once we have repeated that in different contexts, then we can take that further on. That will establish ourselves in our careers, in all the roles we do, and maybe that will help in labouring through our career, so like going into managerial roles or superviser role, for example.

And a few other things I’ve learned from the academy is one, pursue my passion. Once you’ve identified that, everything just flows in line, and it’s just a lot easier. And everybody has a talent and they’re accountable for their actions towards the goal that they set.

And in terms of once you set the goal, resilience is a very important part, in terms of resilience in the face of disappointments as well. Because it’s not always about toughening up, but it’s about developing resources in terms of self-care, and in terms of going out into the world.

And I know being visually impaired myself, I’m good at problem solving, because I’ve had to do that in so many situations, in terms of job hunting, in terms of using public transport in terms of explaining my disability to others.

So I recently got a new job and it’s quite a different job to what I used to do, because I used to work in the sight loss sector, and I forgot how difficult sometimes it can be to explain to others, because they don’t know. But yeah, that’s what I’ve learned.

And I think meeting other visually impaired people and relating to them, it just makes it a lot easier, because they get it, and you don’t really have to explain it.

And a few other things I’ve learned is never underestimate the power of a plan. Planning was one of the most important things at this day. If you fail to plan, you plan to fail.

And then I know sometimes things can go wrong and sometimes you have to change directions, so it’s important to be prepared to change direction to get where you want. You might start in one area, like I said I used to work for the sight loss sector and now I work in a different area, and sometimes that can be good.

And also in terms of pursuing goals, it can be in anything. It can be in education, it can be in employment. So although I finished my university degree a few years ago, I might go back to it. But right now I want to focus on my job, I want to focus on like the career I’m planning.

But then when I go back to university I want to just thoroughly commit to that, because it’s important to finish what you started. And that’s something that Ben said to me when I was saying “This is where I am at, what do you think?”.

And the ladder to leadership, it’s quite a dynamic thing. It’s like scaffolding, you have to build these strong structures, these solid structures, before you get into anything else.

And you need to have a strong support system, you need to have connections. And that’s why they say it’s who you know, it’s not what you know.

And I also was fortunate and so grateful that I had enough time to meet some of the attendees from the main aniridia conference, which was more of the scientific conference.

And it was a very terrific experience. The energy in the room was great. I met a lot of keynote speakers, some from a research background, some from a more education background.

And yeah, every moment was charged with inspiration, determination and seeing people having travelled from all over the world.

And I think it was such an immersive experience, it reminded me of the importance of empathy and connecting with each other, collaborating with one another.

And yeah, overall the conference was a fantastic experience. There were milestones recognised, opportunities identified,and there was space held for each of us to tap into our potential. So I’m so grateful for everybody involved that organised the academy.

And I haven’t spoken to my fellow peers who attended the conference academy, but I think they would say the same. So thank you so much for listening.

[Tierney] Thank you so much Haya, that was really, really interesting, and it’s great to hear that you had such a good time and you feel like it was really worthwhile and beneficial going. I’m sure there’d be a lot of our members who would love to experience a similar thing.

So whilst people are thinking and you want to put questions in the chat, I guess I’ll start off with what do you feel was the most important take home point for you? What was the most beneficial thing that you experienced? And then also what would be your one key bit of advice to give to others in a similar experience?

[Haya] Oh wow, what a big question!

Yeah, it’s hard to put it into like one lesson I’ve learned, because in two and a half days you just take on so much. And in the conference there was a lot of information, but I didn’t want to be bombarded, I just wanted to make the most of it whilst I was there. Because I know these opportunities don’t come as often.

But I guess one take home message was making the use of your connections, like learning from others. And the beneficial part of networking events like this is you can teach others something that you have learned.

I think I was one of the oldest persons there. I was 25, others were younger than me. So I could tell them the importance of experience. So studying is one thing and then your career is something so different.

So I told them to have long-term goals and see the big picture, because then when you finish your studies it might be easier to figure out what you want to do as a career.

And I’ve also learned from them. Like, I met somebody who could speak five languages. And coming from an ethnic background myself, I’m originally from Pakistan, I can’t speak any language besides English. I can understand my language, but I can’t really…

So fostering those interests outside of work, like volunteering for example, which she does I think outside of her studies, that’s quite an important thing, that contributing, giving back to the community.

So yeah, that’s what I’d say, I hope I answered the question.

[Tierney] Yeah, that’s brilliant, thank you so much. And it was a pleasure to hear from you.

[James] It’s James here. I’m curious to ask you Haya about what can we as Aniridia Network do to help you further on this confidence and leadership journey? And what would you suggest that we do for other people like you?

It’s possible that there might be another leadership academy like this in two years time, but we’ll have to wait and see.

But just within the UK, what would you like to see Aniridia Network doing for young people?

[Haya] Yeah, in the UK unfortunately, I hate to say this, but I’ve not attended any support groups recently or in the past. So I don’t know who has attended those groups.

But I guess, as a young person, right now the job market’s quite tough, it’s not easy to find a job. And I know lots of people come out of university struggling even finding that foundation to start their career, like finding an internship.

I know the charity Thomas Parkington Trust, they have this Get Set Progress Internship programme, which they’ve started recruiting new interns from the summer. So I guess partnering with different charities like that and getting people involved.

If there’s already volunteers who, for example are doing comms work, I recently found an apprenticeship scheme, part of the Get Set Progress Internship programme. So the beneficial part of apprenticeship is you get a qualification and you also get that experience at the same time So promoting those internships I think.

And yeah, I think after you do an apprenticeship or internship you can go further on into getting like a solid job and yeah so that’s what I would say Does that answer the question?

[James] Yeah. If there is anything specific that you’d want to see Aniridia Network do for you or for our members, any other additional services or mentoring or anything like that?

[Haya] I don’t know. I think employment is such a big part. In the UK I think it is 40% only employment and that’s full-time employment.

Part-time employment, it gives you that flexibility and everything. But I know some of the jobs you don’t have that security, some of those jobs are only like one year contracts. So I think employment is one thing.

And I guess learning from Aniridia Italy with all the things they do, like making leisure centres more accessible. I think, like I mentioned, they also have a Guide Dogs group. So yeah, there’s so many different things that can be done.

And yeah, in terms of leadership, you can see that in so many different ways. It can be public speaking, it can be leading a group of volunteers, whether that’s running a support group or whether that’s for a fundraising event.

Just making yourself known to the public and partnering with other charities, it can be a small charity of, I don’t know, 25 people. It doesn’t have to be Guide Dogs because Guide Dogs have small fundraising groups all over the country. So yeah, that’s what I’d say.

[James] Briliant, thank you very much.

[Tierney] Brilliant. I think that’s all the questions we have so far. But, as with anything, if you do have questions for our speakers, do feel free to get in contact with them.

But we have pretty much drawn to a close, that was our final speaker.

From me and the Aniridia Network team, we’d like to thank all the speakers for donating their time, and we’ve heard some really interesting topics, which I’m very excited to follow along and learn some new things that are going to be coming along down the line.

And just thank you for everyone for attending.

[James] Yeah, absolutely.

So on behalf of Aniridia Network, we’d really like to send a massive round of applause to Tierney for hosting today and pulling together this whole event. It’s the first time she’s volunteered with Aniridia Network and this has been a real ‘in at the deep end’ exercise for her.

So yeah, big thank you to Tierney for pulling together all the speakers and organising the agenda and all that gubbins. So yeah, brilliant, well done, thank you Tierney.

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