What I Hear when you Talk about Hope

I hope for many things in my life. I hope I will graduate with a good degree, that I will find a job, that I will start a family some day. I hope for happiness and friendship and lots of laughter. We all hope for different things. I have friends who are blind like me who hope one day they may regain their vision, and whilst that isn’t my personal desire it is a perfectly valid one.

Hope is so important. But recently the word has soured somewhat for me and lost some of it’s bright, pure meaning. Many organisations talk about hope when they are promoting research into potential treatments for blindness. And I can’t help feeling a little sad about this. Because whilst it is perfectly ok to hope you may regain some vision, the word “hope” is often used to make a general statement regarding being sighted vs being blind. Sight is hope, they say, for us all. Yet for many of us the fact is that it isn’t. These organisations seem to equate hope with sight, as if it is much more valuable in the end than being blind. And the choice to pursue a cure is rarely presented as such, instead it is often implied that there is no choice at all, because surely we would all jump at the chance?

When this happens, whether the intention was to do so or not, these organisations imply that the life of someone like myself is intrinsically less valuable than the life of someone who is sighted. I must want a cure because my existence as it is in its current state is flawed due to my blindness. My body, and thus I, am worth less. And to be honest that is really hurtful.

I have written before about how thankful I am that my parents gave me a full, happy childhood free from concerns that I should be different. I knew treatments were being researched but they certainly didn’t govern our lives. And I have also written about how important it is that people have choices, and one of those choices is absolutely exploring your treatment options. There is nothing wrong with investing money and time in medical research.

But my problem is the way potential treatments are presented. Parents speak about having hope for their childs future. Newly blind people speak about when they will be able to get their life back. These posts are written with a sense of dread, as if the person is standing with an axe above their head, just waiting to fall. The axe, of course being blindness. And I read these words, feeling the pain as they sink deeper and deeper inside me. Because what I hear, what is being said is that a blind life can never truly be worth the same as a sighted one. I know I keep coming back to this point, about the worth of our lives. But it is so central to this conversation and so often overlooked I feel like I must.

I recently watched a video in which an organisation asked whether the best a child could hope for was a guide dog or cane. And I was honestly stunned. Parents and children spend hours, huge amounts of energy and often money they barely have fighting for access to appropriate cane training, to braille or an equal education. And yet organisations that chase a cure dismiss these things as though they are shameful and disgusting, rather than the tools of independence that empower many of us to live wonderful lives.

I can’t express the pain I feel when I hear this. It is absolutely devastating and very difficult to live with. I run my fingers over my skin, twist my hair round my hands and wonder if truly I am broken. I know, of course, that I am not. That these people are misinformed if they truly believe these choices, to be blind or to undergo experimental treatments aren’t equal. But it still hurts. Because whilst people raise money for future treatments their are very real blind people alive today who are being hurt by their words.

Our words have power. If we hurt someone, even if we didn’t intend to we should absolutely try and do better. We can’t say that our intentions were good, and turn our back on the situation. If we truly want to help we have a responsibility to do better in future. This is what upsets me the most about organisations that are trying to fund treatment programs. They do very real harm, not through their research but in how they present it as the only way someone like me could have a full life. And instead of listening to those of us who are hurt they bury their heads in the sand. And we are left to pick up the pieces.

So here are my hopes for the future. I hope that whatever we choose as blind people, whether we choose to live our lives and not seek out treatments, or whether we pursue them, our choices are viewed by society as equal. I hope that organisations will change the way they speak about blind people and the ways in which they encourage people to donate. I hope they will encourage people to invest money in treatments so that blind people have choices, rather than because it is the only hope for our futures. I hope that they will talk about blind people who live happy lives, who deserve to have access to all the choices possible, rather than people who manage to live “despite” being blind.

I hope, more than anything that those who are unintentionally causing such harm will listen and learn, and that they will understand why I am speaking about this. I don’t do it to be difficult or to fight, I do it because I have spent my whole life being viewed as less than, and the last place I want to see those kinds of judgements is from organisations who should support me.

And finally I hope we can all value the beauty in having a choice, and that blind people are given the freedom to make those choices free from judgements. Because choice and freedom are the most sacred things of all.