INTERVIEW WITH DR. MONÉS, MD, PhD, OPHTHALMOLOGIST, MACULA AND VITREOUS SPECIALIST AND RESEARCHER
How did the idea to develop a project like SilVer come about?
After years of experience treating patients who suffer from degenerative retinal diseases, I am highly aware of the suffering that losing vision entails for them and their relatives, together with the difficulties they have in adapting to this new situation. For these people, information about existing resources is vital. The internet is a communications network that provides us with a great amount of content but this is often excessive and lacking in filters. This is where the idea of SilVer was born; from the desire to provide a list of apps and devices that are accessible to everyone; a short and reliable list, one that has been authenticated and selected by specialists.
Why would a doctor and researcher choose to become involved in a project of a clear social nature?
We can’t always relieve pain but suffering, which is how pain is experienced emotionally, is manageable or treatable. I try to show that people are not just eyesight, there is much more to us than that. Many patients who do not run the risk of going blind, but who have notable vision loss, suffer from this fear: they are too afraid to express it but the fear is there. Although they don’t ask, I respond and tell them what can happen to them and what can’t. When you identify what can happen and you give them instruments with which to face up to the situation, their anxiety is reduced.
How important in your work is your manner when treating a patient?
It is vital. We doctors should not be content with curing or trying to halt a disease. We often form part of key moments in patients’ lives and we can impact positively by giving them confidence, opening doors and helping them to understand what is happening to them. In this regard, SilVer is the door through which they can access technological resources to help them face up to this unexpected situation. For example, there are patients who experience great anguish because they cannot continue to do activities like reading the newspaper or walking without a companion. However, today there are many apps that enable them to continue this type of activity; the problem is that many people are unaware of their existence or how they work.
Why did you decide to develop the project with DRJ (popularly known as Macneticos)?
I met Daniela and José five years ago and we’ve been collaborating ever since. They are experts in digital accessibility and are such great professionals that you often forget that they are also blind. But this characteristic makes their assessment doubly valuable: firstly, through their ability to analyse each device and app from an expert’s perspective and, secondly, because they are people who also face the difficulties of blindness in their daily lives.
Does society have to change its attitude about the blind and those with vision difficulties?
Without the slightest doubt. And both the Institut de la Màcula and the BMF have the desire and the vocation to make this happen. For some time, I have been highlighting to different audiences the need for this change as it requires great support from the institutions together with campaigns, massive ones that raise awareness in society as a whole. In the field of research specifically, public and private support is notably less than for other diseases like cancer or Alzheimer’s.
Does someone who is not blind from birth and who has lost part of their sight as an adult need to incorporate assistive technology into their life in the same way?
From my experience and the innumerable conversations that I’ve had with Daniela and José, it is clear that the starting point is not the same. For someone who has been born blind, not having vision is what comes naturally and this situation will lead him or her to develop a set of resources throughout life. In contrast, those who lose their sight or who have low vision as an adult suddenly face something that is unknown and feel disorientated and unprotected. According to their age and personal circumstances, technology is a branch to cling on to.