As a child, I grew up in a family who didn’t seek a cure for my eye condition and it was one of the best things that happened to me.
I am always very hesitant to praise articles like this, for a few reasons. There’s nothing wrong with wanting to cure eye conditions, I’m not even sure how many times my family has been to various places, not for the purpose of trying to get me treatment, but to donate blood, to let doctors take pictures of my eyes and to answer questions. This has all been in the name of research. I have a hereditary autosomal recessive eye condition, this means that both my parents are carriers. I’ve been blind since birth, though used to have a little more vision than I do now. At one stage glasses were useful, not to help me read, I’ve never been able to see that much, but to extend my field of vision.
I’m more than happy to participate in studies that may help other people. Whether this is to cure the condition, or to understand how it progresses so that others growing up with it can prepare for that. So why do I turn away from articles claiming that a cure for blindness has been found?
Quite simply, because it hasn’t. Yes, there are technologies being developed to improve the vision of people with genetic, degenerative eye conditions. However, none of these technologies are being implemented in hospitals for us all because at this stage they just aren’t good enough. Scientists are understanding more and more about how the retina works and ways in which they can attempt to replace it, but many of these treatments haven’t even been tested on people yet. I remember over five years ago when people with my eye condition were saying they would be cured soon, because gene therapy trials for LCA had started. Yes, these trials were somewhat successful, however, people with LCA aren’t being invited to be cured, because a cure hasn’t actually been found yet. It takes years for a trial to be completed, for the full affects of treatment to be assessed and to then seek the funding to begin treating other people if there was even a high enough success rate in the first place.
Starting to develop a technology does not mean that blind people will suddenly be cured. For me, these articles are not harmful, I have read a lot about LCA, its progression and what I should expect in later life. I am thankful that my parents didn’t focus on finding me a cure, as we knew that it was pointless, and instead pushed me to become independent. We participated in some things, like the donating blood I mentioned above, when asked, however it was very much something we did if we had time. As a child our focus was on ensuring that I learnt braille, could use a cane, tie my shoe laces, begin to cook…essentially what most parents encourage their child to do. We weren’t consumed by a need to cure me, and I think that this is one of the reasons why I have the skills I do now.
In short, my family haven’t seen me being blind as a tragedy. It can be a pain, but we’re realistic enough to know that in my lifetime there won’t be a cure. So instead of devoting all our time to finding one we ensured that instead I would have the skills to grow up to be a functional, productive member of society. It concerns me that some parents of newly diagnosed children may read these articles and place false hope in finding a cure for their child. That they will go on to start charities and raise thousands, and even sometimes hundreds of thousands of pounds for research. It concerns me not because I am against the research, but because I don’t think that it’s the kind of childhood that encourages the blind person to grow and achieve the highest level of independence they can. If all the families efforts are focused on curing their child, are they really fighting for access to services, for an equal education?
I hope that people will strike a balance, if they wish, then I would encourage them to participate in trials and studies. Even if it doesn’t result in a cure for blindness, perhaps it can help someone else. Science is a wonderful thing and I believe that the more information we have the better. On the other hand, I also hope that parents will make sure their child knows that it’s ok to be blind, that there is no shame in being who they are. That parents will encourage their children, blind or sighted, to reach their full potential. If you bring your child up vocally campaigning that blindness is a terrible thing that needs to be eradicated, how will your child ever see themselves in a positive way?