For the first episode of our new podcast All Eyes On, we mark European Diversity Month (May 2021) by sitting down with a representative of the International Agency for the Prevention of Blindness (IAPB), a Santen colleague who has retinitis pigmentosa and Santen EMEA's Vice President of Human Resources to discuss the need for better diversity and inclusion.  

You can also read or hear (by enabling the screen reader) the full discussion below:

Siân Boisseau: Welcome to All Eyes On, a podcast bringing the latest views about ophthalmology and eye health, convening experts from across Europe, Middle East and Africa to discuss the topics influencing ophthalmology today and tomorrow. 

For this first episode, we're marking the first ever European Diversity Month organised by the European Commission, which was recognised last month in May. Today we'd like to discuss the importance and need for better representation and equality in ophthalmology, reflecting on access to healthcare services as well as the importance of the inclusion of people with diversity of vision should they have visual impairment or vision loss. I'm Siân Boisseau, Head of Communications for Santen in the Europe, Middle East and Africa region. I'm very happy to be chairing this first episode, All Eyes On: Diversity and inclusion. 

Today we'll be having a discussion with experts on this very important topic. I'm delighted to be joined by our three highly informed guests. Firstly, Jess Crofts-Lawrence, Head of Policy and Advocacy at the International Agency for the Prevention of Blindness, the IAPB, who will share their perspective on the state of play for diversity and eye health today. Hi Jess. 

Jess Crofts-Lawrence: Hi Siân, thank you very much for having me. It's great to be part of this conversation. 

Siân Boisseau: Secondly, Mohamed Omar Abdin, our Corporate Social Responsibility team member at Santen Global, who is very kindly going to share his experience of living and working with vision loss caused by retinitis pigmentosa. Hello Mohamed. 

Mohamed Omar Abdin: Hello, thank you very much for having me. I am based in Tokyo and originally from Sudan, and I'm so glad to share my experience. 

Siân Boisseau: And finally, Maiken Engsbye, Head of Human Resources at Santen in the region who brings her deep knowledge and expertise of diversity and inclusion from an industry perspective. Hello Maiken. 

Maiken Engsbye: Hi Siân. Happy to be here. 

Siân Boisseau: Thank you. It's great to have the opportunity to discuss these topics with you all and share your thoughts and perspectives with our listeners from across the ophthalmology community. 

Firstly, we want to take an opening insight from each of you. So a question for Mohamed: Vision of course is important for so many aspects of life. Mohamed, why is equal access to eye care and medical services for all people so essential, regardless of factors such as where they live or ethnic origin? 

Mohamed Omar Abdin: Yeah, I believe from my own experience I know many, many people who lost their sight because of curable diseases, such as trachoma, or even other infectious diseases and that was because they used to live in remote areas where they didn't enjoy access to basic health service. That is a clear inequality. And in countries like Sudan in 1970s or 80s, if you go blind it will cause a lot of socioeconomic consequences. So that's why I think we need to have equal access to health service and I saw the difference when I came to Japan – the health coverage is great, you can discover these diseases in early stages. And that we are still lacking in many parts of the world today. 

Siân Boisseau: Thank you Mohamed. Jess, in the recent report, the IAPB investigated the impact of vision loss on society and also the disparities in the access to healthcare services and care across the world. Can you share some of the key findings please? 

Jess Crofts-Lawrence: Sure, and really building on what Mohamed has just said, we know that eye health is driven by inequality. Last year IAPB published its new Vision Atlas, which brings together data from the Vision Loss Expert Group and the Lancet Global Health Commission, and that showed us that eye health has a disproportionate impact on marginalised groups: women, children, people with disabilities, refugees, migrants and indigenous people. All of those are at greater risk of eye health and sight loss. And it also showed us that 90% of vision loss is actually in low and middle income countries, 55% are woman and 73% are older people.¹ 

All of this is down to access. I think it's really shocking actually, but we live in a world today where there's 1.1 billion people who have blindness or sight loss because they don't have access to basic eye care services.¹ This is all down to inequality that exists within countries and across countries. I think that has even been brought more to the fore with COVID-19, but thankfully I do think that there is now a greater recognition, particularly at the global level, that we need to do more and we need to do it better. 
 

Siân Boisseau: Thanks Jess. That's very interesting. Just coming back and relating those two points that you've made and Mohamed has made, it goes beyond access to eye care and health services, doesn't it? I know something you've spoken about before Mohamed is information impairment. Can you tell us a little bit about that? 

Mohamed Omar Abdin: Yeah, what I tell people always is that visual impairment is information impairment. Why? Because most of the information is shared based on the assumption that everybody can see. So for example, I was working for a university and I used to go to many international conferences and what I saw there was the presenters come and show their PowerPoint and assume that everybody was seeing what they were presenting and so there we have suffered a lot. Information is a valuable resource and it's capital. If you don't have access to this information it means that you are excluded from having an opportunity to participate or to enjoy the fruits of this information. Recently we have big differences that I might talk about later, but one of the great challenges faced by persons with visual impairment is the inequality in the information – having access to the information.  
 

Siân Boisseau: Interesting thank you. 

A question coming to you Maiken: The European Blind Union estimates that the average unemployment rate of blind and partially sighted people of working age is over 75%², and as a specialist in human resources, what do you see are the barriers for people with vision impairment to actively participate in the workplace? Do you think this leads to very high rates of unemployment? 

Maiken Engsbye: Yeah. I'm very glad that you pulled out that statistic Siân because it is quite a frightening statistic. And as Mohamed said there is inequality in information. There is also inequality in employment among people who have visual impairment or any other impairment, if you like. 

I think people with visual impairment, and any other impairment, meet a lot of barriers in the workplace. They might not even ever be able to access the workplace and this is due to unconscious biases like maybe people with an impairment, be it visual or other, might not be as smart, maybe it's too difficult to integrate them into the workplace, what do we do to accommodate them because they have special needs, and these are all false. It's just about taking a decision and focusing on it and making it happening. So these are some of the barriers that, for example visually impaired, people meet. 

Siân Boisseau: Thank you. Thanks for your opening insights everyone. It's very clear that the impact of vision loss on health is far reaching beyond eye health alone. Obviously, the last year or so has been an exceptional time with a huge focus on health and medical services during the pandemic. Just coming to you Jess, you mentioned the impact of COVID already, it'd be great to just talk a little bit more about that, if you could. 

Jess Crofts-Lawrence: Sure. I think COVID exposed some deep structural inequalities that exist within society. I think a lot of those were not new. And then when you look at it for people who are blind or partially sighted what we saw, particularly in the beginning, was that governments didn't think about how new regulations or information or lockdowns might have an effect or an impact on those people. So, even simple things like transportation, getting your shopping when you rely on a support person, educational materials being accessible to partially sighted or blind children or parents, guide dogs not being able to observe social distancing and even access, as Mohamed said, to health information. All of that was an afterthought for a lot of governments, which I think demonstrated that there's not really been much engagement with people who are blind or partially sighted when they were developing these new regulations. 

Siân Boisseau: Yeah, very interesting. Thank you. Mohamed from your perspective, as someone with vision loss, how have you found the pandemic has affected you? 

Mohamed Omar Abdin: Okay. In the last 20 years, we’ve seen a huge or great improvement in technology and persons with visual impairment are – we are – the beneficiaries of technology. I'll tell you why. When I was a kid, I lost my sight in Sudan. I became unable to read books and/or write and so I relied on my friends to read aloud books for me. And when I went to exams, somebody read the exam questions and I had to orally respond. Later on I learned braille, but also by learning braille I can only have access to books written in braille, which were very limited. And if I write something in braille, only people who can read braille could read these things. 

But after we had the computer come to the stage in the 1990s, we had a technology developed known as screen reading or screen readers. This reads what is written on the computer screen and through this you can read emails, write emails and surf the internet. So for the first time in the mankind history, blind people became able to communicate and to enjoy written communication with others. And this has a tremendous impact on creating job opportunities and creating a more friendly working environment, for persons with visual impairment. This is a historical moment, but unfortunately people's mindset is way behind the curve of technological advancement. 

And still people don't understand or underestimate how their understanding of the needs of visual impairment could give us the opportunity. We need to work more on the mindset – of people’s mindset. 
 

Jess Crofts-Lawrence: Yeah, I couldn't agree more. I think in many ways technology has been a wonderful equaliser. And I think with all of us stuck on our computers all day during the lockdowns and during COVID has made us think about whether our organisations and our systems are really as accessible as they can be. 

And I think it's important, as Mohamed said, to remember that we're all responsible for this. Accessibility starts with each one of us in our own daily lives. It can't be addressed overnight or in one attempt, but it's a continuous process of reflection and commitment to improve. I think, in a strange way, COVID has also been an equaliser in terms of access to decision making. I see this certainly at the global level where processes, like for example the United Nations General Assembly or the World Health Assembly, were just inaccessible to so many people because of the expense and the difficulty of travel. And what it’s meant is that we can finally have a global conversation and more people's voices are heard within that forum. So I really hope that that continues and that's something that we take away from COVID-19. 
 

Siân Boisseau: Thank you both. It's very interesting. So many different dynamics and behaviours that COVID has forced people into for good or bad, I think. And we've seen evidence that people have been less likely to take their glaucoma treatments, for example during the pandemic, perhaps they've been nervous about going to the pharmacy to collect their prescription.³ So, it's important not just for those who have already experienced, sadly, vision loss but those maybe in danger of it as well in the future.

So you've both touched on how we potentially could be better, but I'd like to explore that a little bit more. So how societies, organisations and individuals can embrace diversity more broadly, but especially from the perspective of those with vision loss and other disabilities. 

Just coming to Mohamed again: You've had the experience of vision loss caused by retinitis pigmentosa. What advice do you have for companies that really want to provide greater support for employees with visual impairment? 

Mohamed Omar Abdin: Well we should start from understanding, a proper understanding of what we can do and what we can't do. So unfortunately many people have a perception that blind people could only do certain jobs. So for example, I live in Japan and traditionally most blind people used to study massage and acupuncture and work as practitioners on the assumption that blind people are very good in that sense, but as a matter of fact I know many blind people who are very, very talented and gifted in many professions such as computer programming and system engineering. So we need to start with a better understanding, a right understanding, of what persons with visual impairment can do. 

And the second thing would be to make sure that our environment, internal environment, that includes the mindset of the people who share information inside the company, the system compatibility with technologies that we use, like screen readers, and the willingness to improve the workplace to become more accessible, not only for persons with visual impairment but for all employees with different needs. 
 

Siân Boisseau: Thank you. And then coming to you Jess: In terms of global policy on diversity and inclusion, what's the impact on the eye health landscape? 

Jess Crofts-Lawrence: I think, as I said before, at a global level there is this recognition that we need to do more. I mean at the heart of certainly the UN's Sustainable Development Agenda is the mantra of "leave no one behind". But I think nowadays when we realise that actually what we need is much more than a kind of pledge to inclusivity and equity. We need focused and concrete actions taken up firstly by countries and by governments and then also by workplaces and the wider society. 

I think it's all of our responsibility to think about accessibility and inclusiveness and equity and I think as a sector we also need to look within ourselves about how equal and inclusive we are and whether we are having true representation of people in senior leadership positions. Like Mohamed has said, I think that's really important to showcase those examples of successes.  
 

Siân Boisseau: Thanks Jess. Now Maiken, what does it mean to be a good ally of diversity in ophthalmology from an industry perspective do you think? 

Maiken Engsbye: Yeah, it's really about starting to focus more on this topic. A lot of companies, they talk about it but they don't really do much about it. They might have some KPIs, but they're not really serious KPIs. I heard that Mohamed said that technology has moved faster than mindsets. Now we need to get the mindsets along and that is really a journey, but if we don't specifically focus on it with concrete action, as Jessica said, then we will get nowhere. 

I don't believe it will happen on its own so this is really about focus and being serious. That governments and companies do it in a different way and that we, and I'm talking from a company perspective, start focusing on what we can do and not what we can't do. I have often heard discussions in various companies that I've worked for when we have had discussions, especially about people with some special impairments, it's always about what other people think they can't do and how difficult it might be for us to get to there and then the conversation stops and you go to another topic. So those are really key points. 

Siân Boisseau: Thanks Maiken. And there's an initiative we've begun to support in Santen, The Valuable 500. Can you tell us about that? 

Maiken Engsbye: Ah yeah, I'm very excited about it. This year Santen joined The Valuable 500. The Valuable 500 was kicked off at the Word Economic Forum and it's a congregation of businesses coming together to help remove barriers for people with some kind of impairment. And of course our pledge, Santen's pledge to The Valuable 500, is that we will focus on removing barriers for people with visual impairment as this is the business we are in. And Santen is now part of this, with a specific commitment on helping to remove barriers for people with visual impairment, obviously because we are in ophthalmology and that's the business we know best.

What we are doing, probably, things that I even don't know about at the corporate level, but in EMEA the first step is really that we are designing an internship for young graduates with visual impairment. So we will pilot this in Amsterdam, in our affiliate in Amsterdam, and then the idea is to roll it out. And already now we are discovering that there must be a number of graduates with visual impairment out there that would be highly interested in such a programme, but we are actually struggling to find people and this is where the information impairment comes in as they might not have the information. We might not yet have understood where they go for information. But I'm very excited about the programme and we hope to have our first intern in September to November timeframe. 
 

Mohamed Omar Abdin: I think an internship is a good approach and easy entry for employers to have a better understanding of what persons with visual impairment can do in the workplace because it doesn't come with an obligation of employment, and it also gives the persons with visual impairment a chance and/or opportunity to experience the workplace before graduation, for example, from college. I know many of my friends, when we were students, they mentioned that they don't have equal opportunities of internships and that will definitely affect their job hunting activities if you don't have a real understanding of what the companies want from employees. So I believe internship is a good entry or good approach, which I recommend the employers to get involved or engaged in. 

Maiken Engsbye: I'm happy to have that feedback from you Mohamed. I can hear you are already a great supporter of it so that's great, thank you so much. We'll keep you posted on how it goes on this internship. 

Siân Boisseau: It seems as if the situation we're in at the moment we just need a little education, a little experience of what is possible and maybe the help of technology as well and perhaps things will accelerate, and more understanding and acceptance and inclusion overall. 

Thank you so much for listening and of course to Mohamed, Jess and Maiken for sharing your thoughts and experiences. As we look towards the future, there's so much more we can do in creating a more equitable society, and indeed a global ophthalmology community that is inclusive as well. We hope today's discussions have given some thought starters on these topics. I've certainly enjoyed hearing these different perspectives. 

Stay tuned for Santen EMEA's Twitter and LinkedIn channel updates for the next episode of All Eyes On. Thanks again for joining us and looking forward to next time. Goodbye.

References 

1. International Agency for the Prevention of Blindness. Vision Atlas (2020). https://unsdg.un.org/2030-agenda/universal-values/leave-no-one-behind (last accessed: June 2021)
2. European Blind Union. Facts and figures: About blindness and partial sight. http://www.euroblind.org/about-blindness-and-partial-sight/facts-and-figures (last accessed: June 2021)
3. Data on file. Patient survey results