Living with Blindness Before the ADA: Review of “Planet of the Blind”

Overview of Planet of the Blind

Stephen Kuusisto’s fantastic book, Planet of the Blind, details his life as someone living with blindness before the implementation of the Americans with Disabilities Act. He describes what it was like growing up, how he was ostracized throughout his education, and how he struggled to deal with his own thoughts on being "disabled." In the beginning of the book, Kuusisto details the cause of his blindness and the diagnosis of retinopathy of prematurity. He also explains his visual impairment through the use of metaphors in descriptive detail. Despite being legally blind since birth, Kuusisto struggled to accept his visual impairment. As Peer Advisor Audrey Demmitt described in her review of the book, Kuusisto spent an inordinate amount of time "faking it" in the sighted world, living as if he was not visually impaired.

Struggling to "Pass As a Normal Child"

Kuusisto struggled to "pass as a normal child" early on. In one instance, while driving a boat, Kuusisto describes how he felt when he failed to see something his father pointed out: "caught between warring snakes of definition: blind I’m a fatted failure; posing as a sighted person, I’m on a terrible high-wire. But people will only like me if I can see." He certainly feels as though he must fit into societal norms as not to be deemed a failure, yet, at the same time, he admits that he can hardly imagine the energy it must have taken to lead a life as though he had no vision loss. Without admitting it, Kuusisto is definitely living a life of trying to pass himself off as a typical, sighted young person and live life just as any other young person would.

There are numerous statements throughout the book that point out Kuusisto’s struggle with trying to "pass" as a sighted person. For example, when he was a teenager, his problems in the classroom were "legend," and his embarrassments were "legend." I would even go as far as to suggest his life’s struggle was "legend" trying to pass as a person without vision loss.

Applying the Medical Model to Kuusisto’s Experience

Another important theme in this book is the use of the medical model as a way to approach Kuusisto’s disability. His vision loss was viewed as a "tragedy" and that there needed to be a cure to fix him. Surgeries were needed to "fix" his eyes, and numerous medications were taken for the stress and pain he endured. Rather than "fit" into any of the stereotypes of a blind person, such as wearing dark sunglasses or using assistive technology, Kuusisto fought his vision loss.

Kuusisto’s Relationships with Others

Throughout the book, Kuusisto details his relationships with others and how they perceived his disability, including his parents’ views, his girlfriends’, and his own struggles of whether or not he should be up front and admit to being blind. As educated as Kuusisto’s father was, he was never really willing to admit to his son’s disability and encouraged him to be as "normal" as possible. His mother was willing to allow for extra tutoring and demanded that Kuusisto attended school just as any other child would; however, she seemed distraught as though avoiding Kuusisto’s blindness was not having to admit that it ever existed.

Three characters, Ramona, Bettina, and Barry, helped him during his "coming of age." Ramona and Bettina helped him with reading aloud, and Barry introduced him to the white cane, giving Kuusisto some independence and self-admittance into the realm of disability. It isn’t until after he’s fallen into fresh concrete that the idea of getting a guide dog is planted in his mind and begins to take root. As this idea flourishes, it is quite apparent in Kuusisto’s writing the value he places on his newfound freedom and ability to travel independently. It is then that he truly begins to accept his disability. No one could ever replace the freedoms he is granted with the use of his guide dog Corky. The excitement and joy he expresses are certainly palpable.

My Final Thoughts on the Planet of the Blind

I would absolutely, unequivocally, without hesitation recommend this book to anyone who might inquire about blindness; however, I would express that were one to know a blind person or read this book as an account of a blind person, they only know one person’s account of blindness. As a legally blind person, relating to a lot of similarities, there are numerous differences as well. As an example, some people who are blind vehemently hate their cane. Some do not. Some people who are blind can’t stand dogs; some can’t accept the responsibilities incurred with having a guide dog, and some just aren’t ready for one reason or another. While the guide dog was a wonderful sense of relief and expression for Kuusisto’s independence, it is not the cure-all for all individuals who are blind or visually impaired. It’s not as simple as black and white; there are whole gradients of grays being ignored and must be understood. Just as there are gradients of colors, there are entire spectrums to being blind.

If you are experiencing vision loss, there are many resources available to help you better understand your eye condition and find services to regain your independence. VisionAware offers information about support groups and many personal stories of individuals living with vision loss. You may want to read one of these stories to find out what paths others have taken. Another good read is Peer Advisor Audrey Demmitt’s helpful piece about adjusting to vision loss, From Personal Loss to Personal Growth and the Road to Independence. Remember, as AFB’s President and CEO, Kirk Adams said, "losing your sight doesn’t have to mean giving up your independence, your career, or your favorite hobbies. With rehabilitation training and the use of assistive technology, people with visual impairments can continue reading, cooking, golfing, traveling, surfing the web, and much more."