Feeling Guilt for Feeling Hope

One of the most common questions random strangers at bus stops, cab drivers, airport staff, and anyone else in my presence long enough to make the absence of small talk slightly awkward will ask me as a blind person is: “so there’s nothing they can do?” There are some very interesting assumptions built into this question.

This question assumes that, if “they” could do something, then I wouldn’t be blind.  It assumes that I want them to do something.  It assumes that it is someone else that needs to do something, and because the “they” refers to doctors and/or scientists, the question assumes that the “thing” that needs doing relates to treatment and/or cure.

I’ve been thinking about this more lately because of a couple of emails sent to my inbox in the last two days.  The first was forwarded to me by a family member.  It was originally sent out by “the Foundation Fighting Blindness”, and the second was a CTV News story sent to a blind-related listserv I subscribe to.

Canadian Trial Will Enrol Retinitis Pigmentosa Patients

Scientists studying a potential new therapy for Leber congenital amaurosis (LCA) are expanding their clinical trial to include people with some forms of retinitis pigmentosa (RP). The trial is early safety study of a therapy known as QLT091001. The trial will recruit 24 people who carry gene defects in either the RPE65 or LRAT gene.

You can read more about “The Foundation Fighting Blindness” here.

Now an excerpt from the CTV News story:

German scientists have invented an implant that they say has allowed three blind people to see well enough to make out shapes, raising hopes for the thousands of patients with degenerative eye disease. The implant was tested on three patients with retinitis pigmentosa, an inherited degenerative eye disease in which the eye’s light receptor cells gradually stop functioning and die off. Researchers developed a tiny, three-by-three millimetre microchip that contains 1,500 pixels designed to pick up light. The idea is that when an image hits the chip, it is converted into electrical pulses that stimulate healthy cells in the retina. These cells send signals to the brain, where the image is reconstructed.

Read the rest of the story here.

As someone with RP, I think it’s impossible not to be affected by these sorts of stories.  Even if your response is to not allow yourself to feel hope — a reasonable response given that I myself have been hearing about similar breakthroughs for most of my life — there will still be that twinge, that pang, that gnawing of hope that is impossible to entirely suppress.  But for me, what I find more interesting about my response to these sorts of stories is not the hope, but the guilt for feeling hope.

I lean decidedly towards a social model understanding of disability.  That is to say that I believe that disability is socially constructed by the attitudes people have as well as by the design of products, services, institutions, and the physical environment.  I believe that a world that is set up to be flexible enough to accommodate the diverse body types, skills, talents, abilities, preferences etc of human beings would be better for everyone.  The medical solution is not a real solution; at least, it’s not the solution to nearly as many problems as we think it is.  Yet, despite believing these things, if I’m honest with myself, I do feel some hope when I read stories like the ones above, and I would take the cure if the costs weren’t too high.  And this feels like a sort of betrayal of my beliefs in the social model perspective — a true believer wouldn’t take the cure because this would be an admission that medical treatment really is the ultimate solution.

Of course, given the way things are actually set up right now, it makes sense to want the cure.  The world is not a very friendly place towards disabled people, and this creates a very powerful pressure to feel hope for a cure.  Yet this doesn’t really assuage my guilt.  It still feels like I would be turning my back on my beliefs about disability, like I would be joining the “fight against blindness” when the war should actually be waged against all of the social factors that make it so difficult to be blind.

I would be interested to hear if others experience these mixed feelings and what they do to deal with them.

Marc Workman

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One thought on “Feeling Guilt for Feeling Hope

  1. A feeling of un-ease of some kind seems to me fairly natural, though whether correctly identified as guilt in particular, or as properly directed at or deriving from an endorsement of the social model of disability, seem to me at least less clear. The feeling of loss is real for anyone who has an ability that they then recognize themselves as no longer having, and sometimes just as real for those who have never gone through that transition but have some grasp of the benefits one has in light of having that ability, partly because they can witness those benefits in others. And given the reality of the feeling of loss (in this extended sense), and knowledge of the possibility of compensating for that loss, the thought “I wouldn’t mind being fixed up / enhanced” in the corresponding way also seems to me more than understandable, perhaps more like inevitable.

    And the un-ease? In my case, it stems more from an acceptance of a wider range of human diversity than fits mainstream views, and the feeling that in experiencing the loss and the desire for restoration that I am failing to live up to that ideal fully. It’s a struggle with integrity, I think, and perhaps if the social model of disability is a key part of your identity, then your feelings / thoughts fall under that same general heading.

    But on whether one should tie oneself in knots too much about this, I think that the pair of earlier What Sorts posts, The son that Trent can never be and Samantha, loss, and ableism, and especially the accompanying comments, provide as good a place as any I’ve seen for further reflection.

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