Medics thrive on feeling useful: testing abnormalities, forming a
differential diagnosis, providing treatment and tracking improvement.
But for many conditions, the story is one of uncertainty, setback and
management rather than cure. While clinicians busy themselves with
visible and measurable signs of disease, the patient’s hopes, despair
and wavering sense of self may go untended, leaving them with the
feeling that they are descending into darkness alone.

This is particularly true when the patient is going blind. Andrew
Leland’s memoir about this process articulates beautifully, with
energy and honesty, how being held between seeing and blindness has
changed him and his views on our ableist world. He is a journalist and
podcaster who has written for the New Yorker and is now a contributing
editor to American magazine the Believer, and his sensitivity to
storytelling, history and literature is everywhere evident when
reporting on his own eyesight. As a teenager he started to realise he
couldn’t see properly at night, compounded by experimentation with
cannabis and psychedelics. The tunnel vision worsened. A diagnosis of
retinitis pigmentosa (RP) was finally made. It is a hereditary
condition that slowly kills the rod cells of the retina, which are
responsible for seeing peripheral objects, particularly in low light.
At some time in middle age the eyes will fail completely.
Ophthalmologists, who have “a low sense of the lived experience of the
visual impairments they diagnose”, review Leland’s “bad peepers” every
couple of years. All the same, there’s no actual treatment, only the
tantalising promise one day of gene therapy and CRISPR technology. The
author now has 6% of his visual field left, which renders him legally
blind but still able to read print.

His patchy acuity makes him hesitant in certain situations, such as
when as he’s invited to cut his newborn son’s umbilical cord
Unlike the entirely unseeing community in the HG Wells short story
that inspired his title, Leland finds many “varietals” of blindness in
his encounters. People who are native to blindness, born without
sight, are a minority, while many more “naturalised” folk find
themselves there, because of sudden injury or slow degeneration. To
have no light perception at all is rare (15%). Compared with this
extreme, Leland sometimes feels like a fraud. His patchy acuity makes
him hesitant in certain situations, such as when invited to cut his
newborn son’s umbilical cord or travelling on the subway with his new
baby in a sling while carrying a cane. His private feelings of
inadequacy are intensified by others’ “scepticism, pity, revulsion,
curiosity”.


Just as there are many types of blindness, there are differences of
opinion within the blind community about how society should
accommodate its members. The US National Federation of the Blind (NFB)
is strident in its demands for blindness to be viewed as a disability,
while arguing that visually impaired people must experience no ceiling
to their success. Whether an artist or an engineer, they should be
seen without discrimination, a stance The Country of the Blind deftly
reinforces.

Leland shares how privilege has softened the blow of losing his sight.
His wife, Lily, an academic specialising in comparative literature,
has a flair for describing the visual world he misses; they are
financially comfortable with access to assistive technology, and he
has not been limited to the “blind trades” of piano-tuning or caning
chairs. Leland enjoys the company of Silicon Valley “tinkerers”, who
see blindness as a spur to creativity, as “intellectually productive,
interesting, even cool”. Theirs is a bionic vision of the future in
which tech propels the sighted and blind communities far beyond the
intrinsic abilities of humankind, so that any difference between them
becomes insignificant.

Andrew Leland: ‘lucid writing and dignified treatment of his subject’
Andrew Leland: ‘lucid writing and dignified treatment of his subject’.
Photograph: Gregory Halpern
While Leland isn’t apologetic for his advantages, he acknowledges in
detail other blind experiences. Losing your sight makes living in
poverty twice as likely, and unemployment 14 times as common. While
blind women who are raped are treated with heightened disbelief, men
accused of sexual assault (most notably Bill Cosby) dare to use their
disability as a lever for compassion or as evidence of their
harmlessness. Leland considers the ways in which blindness has
affected his appetites – sexual and gastronomic, both primed by sight
– and how this invites unwanted dinner party questioning about the
intimacies he enjoys with Lily. Ultimately, he feels that his
masculinity is altered but not dimmed by RP, and he is able to joke
that women may celebrate “one more male gaze extinguished at last”.


Though Leland is accused occasionally by friends of
“over-intellectualising” his situation, his fine sensibility, lucid
writing and dignified treatment of his subject feels anything but
indulgent. This book invites us all to rethink what it means to
desire, to read, to be independent, to sit with uncertainty and to
assume a new identity. Leland models how we might accept inevitable
changes in our faculties as we age with tempered apprehension, humour
and interest.

Kate Womersley is a doctor in psychiatry who writes about medicine,
gender and women’s health

 The Country of the Blind: A Memoir at the End of Sight by Andrew
Leland is published by Penguin (£25.99). To support the Guardian and
Observer order your copy at guardianbookshop.com.
https://www.theguardian.com/books/2023/jul/17/the-country-of-the-blind-review-andrew-leland-a-penetrating-study-of-the-loss-of-sight

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