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.
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.
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. Delivery charges may apply
