A perspective from the “blind”
Blog vol 6.36. A perspective from the “blind”.
I just finished The Country of the Blind, a book by Andrew Leland. Leland is going blind and he is introduced to a whole new world as he gradually loses his sight.
When Leland was 16, he was diagnosed with retinitis pigmentosa which was caused by a mutated gene named MAK. He was bumping into things a lot when it got dark. After a series of tests, particularly an electroretinography (ERG) which measures the electrical activity of the retina in response to light, the diagnosis was confirmed.
What Leland discovered is a whole new world of people who deal with visual impairment. His struggle for much of the book is still having limited sight but being part of a world and culture that is blind. The reality is that very few people are totally without sight. In Leland’s case, he has lost much of his rod function, hence peripheral vision, but has retained some macular or cone function as he has aged. The fear of totally losing your sight is always present, but as he discovers every gene is different, every situation is different, and in his case, he does retain some vision throughout the time covered in the book.
There is a difference between a visual impairment, a visual disability, and a visual handicap. The author struggles through these differences as he writes. His impairment is his physical condition and the resulting visual functions. For example, as his rods drop out, his field of vision narrows, first having a central tunnel with little islands in his periphery and then the islands “get flooded” and gradually disappear. The MAK mutation also affects cone function, reducing the precious central vision. The visual acuity goes down as well as the contrast sensitivity.
The disability is reduced orientation and mobility (O&M). He cannot see cars and other objects in his periphery, creating a great deal of anxiety when getting around. He has difficulty in distance for T.V. watching or seeing a screen in the classroom and, of course, reading is also a problem, at the least reducing reading speed making higher education a real challenge.
Finally, the handicap is very real. How you are perceived by others, how society, institutions, structures are either negligent or stacked up against you, creating very real barriers to thriving and being part of society. Leland spends a lot of time on these issues. He provides a very thorough history of the politics of blindness, the struggle to remove these barriers to the “blind”.
He does a great job in placing himself in the “blind” world, making use of the resources available to him with several sympathetic agencies. In Canada we have the Canadian National Institute for the Blind (CNIB), but in the USA they have two groups: the National Federation of the Blind (NFB) and the American Council of the blind (ACB). These two groups have a similar mandate to help visually impaired individuals but politically do not align. Who knew?
Leland also looks at the advances in technology such as Kurzweil readers and software and hardware applications that really expand visual worlds. I have found that the most useful aid is an electronic magnifier that is portable and reads text for you, called Seeing AI. Another application recruits online/phone sighted helpers to be there when visual questions arise, called Be My Eyes. Since the printing of Leland’s book, there are new apps like Lazarillo, which helps with GPS, location, and orienting. There is huge potential here.
The hope for Leland is that as the “blind” community has more access, stereotypes disappear, and we can see the visually impaired as regular people (who often have a ton of persistence and drive, enviable qualities).
Leland’s book is worth a read. It is very helpful in describing the experience of visual impairment and he does a great job presenting the technologies and assistance available. I personally found that the political focus was not helpful, there was too much of it. People need to know someone has experienced what they are going through, they need ideas for what to do, and they need encouragement. Leland has achieved this part of the task.
Til next week,
The good doctor
