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Fix the World, Not the Person

It seems as though every dozen or so tweets I read on Twitter is another link to an article describing some new technology (for example, retinal implants, gene therapy, stem cell treatments) that is eventually going to lead to a cure for many forms of blindness. This BBC story describes the use of gene therapy to restore some vision to three Americans with Leber's Congenital Amaurosis. The media are full of similar stories.

I read such stories (when I read them, which is not always) with mixed feelings at best. As someone with Retinitis Pigmentosa, a condition that itself has been the subject of some recent media attention, I recognize that I may, or perhaps even likely will, be able to have some of the vision I've lost over my lifetime be restored. I suspect that I would not turn down such an opportunity, though coming to such a decision would take more time and reflection than many might expect.

The reason I say my feelings are mixed is that I'm not sure all of the time, energy, and resources that are being devoted to discovering these "cures" could not do more good if they were directed elsewhere. I'm not suggesting that blindness prevention programs and attempts to restore vision are worthless and should be abandoned. What I want to suggest and encourage others to think about is the possibility that it might be better for everyone to create a world where blindness does not lead, as it does all too often in our world, to poverty, unemployment, under education, and isolation rather than a world where blindness simply does not exist.

I do not at all pretend that creating a world where blind people are able to participate fully in their communities, where we are treated with respect, where we view ourselves and are viewed by others as having dignity is easy to realize, but I do believe it's possible, and I do believe that such a world would be a better one not only for blind people, but for everyone.

I do not disparage the significant work that is being done to treat and prevent blindness; I know I may one day benefit from this work. I will, however, encourage anyone reading this to think more broadly about the kind of world that it would be better to inhabit.

It's unlikely that any amount of research will entirely eliminate all forms of blindness, let alone other forms of disability and variation from the norm. I believe we would do better to focus on bringing about a world where such variations did not diminish one's ability to thrive and flourish, and I encourage anyone who agrees to get involved with and support one of the many organizations, like the AEBC, who are working to bring about such a world.

Disclaimer:

This blog is curated by the AEBC, but welcomes contributions from members and non-members alike. The thoughts, views, and opinions expressed in the Blind Canadians Blog are those of the contributing authors and do not necessarily reflect those of the AEBC, its members, or any of its donors and partners.

Comments

A world that you have described reminds me of John Lennon's song, "Imagine". I believe each culture fights for their place in the world for that Utopia. Discrimination exists for many races, religion, ethnic background and disability, etc, etc. In the USA, legislation was passed on May 26, 1990 of the ADA Americans with Disability Act. Before the passage, history of how the blind was treated was quite shocking. Some were put into mental facilities and forgotten. Today, I believe the conditions have greatly improved. That does not mean educating the public is not done however. You keep up that good advocacy and educating the people. We need to keep those dark primitive times behind us permanently. Yes, much more can be done but it's not going to happen overnight. Many mover and shakers who made advances for the blind have paved the way for us these past two decades.Little by little, it takes many voices from the blindness community working on accessible environmental issues, telecommunications and so forth. Changing the world also reminds me of another quote that I truly like. "You must be the change you want to see in the world". This is an interesting topic.

A lot of changes have admittedly come from individual people trying to solve their individual problems one by one. Large-scale advocacy efforts have their place but often small changes can be made on an individual basis. Those might seem insignificant, but success in one place leads to successes in others. Building on those is how we change things more globally.

Marc, I'm right where you are on the Stem cells and etc. One must research one's eye condition, along with any side-effects to certain surgeries, such as Stem cells, and etc. I too received an email from some one on Stem cell treatment but later heard in the News Media that the treatment can lead to eye Cancer. After my Glacoma surgery, I was able to see for two months, then the vision returned to blindness. In those two months, I must state I was amazed that I was truly able to enjoy the World as a sighted person! I can honestly state that I perform more activities, and see the World more clearer, so to speak, as a Blind person! I continue to strive for equality with my sighted Peers, and am happy to be a part of this group which is striving for the same!

It is a big deal when you are faced with the oppurtunity to be "cured" especially if you have accepted yourself the way you are. There are many levels to this predicamint. My question is... What do you mean by equality and how are you going to attain it?

I'm a little confused, Andrea. I've looked over the post, and the word "equal" or "equality" does not appear, except as what the "E" stands for in the acronym AEBC.

Generally speaking, though, what I have in mind is a world where blind people have jobs like others, participate in their communities and government like others, view themselves and are viewed by others as having dignity, do not face the sorts of discrimination that we all too often face, access the same sorts of products and services that others are able to access, and so on—in short, a world where whether your blind or sighted does not itself significantly influence your ability to flourish.

The only way I know of bringing about this world is to continue writing, talking, educating, advocating, and doing whatever else I can to convince people that this is a better world not only for blind people, but for everyone.

ZZ - Disregard this link; it is used to trick spammers.