Shining a Light on Disability Visibility

Disability Visibility, edited by activist Alice Wong, is a collection of short personal essays written by a diverse group of disabled writers about their experiences with disability. As stated in the book’s back-cover blurb, “One in five people in the United States lives with a disability. Some are visible, others less apparent-but all are underrepresented in media and popular culture.” This fact necessitates a book like this one, because if disability is one day able to be seen as the norm, rather than a negative deviation from it, then nearly seventy million people in the United States will have their lives improve with the subsequent focus on necessary accessibility that many of the writers in this book advocate and create for themselves and the members of their community.

Among other uses, this book can give people with disabilities a sense of unity, faith in themselves and others in their capabilities to create change in the world, inspiration to tell their own stories, as well as a guide for building the healthiest relationship with their disabilities possible. For those who are nondisabled, this book can give them more awareness about the lives of people with disabilities, and help them recognize poor media representation that attempts to dehumanize disabled people. Reading this book can also inspire them to look within their own discourses for area where accessibility is needed so the responsibility of advocating for and creating it isn’t entirely placed on those who need accessibility.

One story in the book focuses on how an astronomer who became visually impaired during the height of her career. “How a Blind Astronomer Found a Way to Hear the Stars” by astronomer Wanda Díaz-Merced follows how she innovated her entire field by creating a technique of analyzing supernovas through sound, when previously, astronomers were only able to analyze them through visual reconstructions from data. This kind of novel innovation opened up an entire scientific field to people with visual impairments, and was only possible because of Díaz-Merced and a few of her colleagues’ determination to create accessibility. She states that, “If people with disabilities are allowed into the scientific field, an explosion, a huge burst of knowledge will take place” (Díaz-Merced. 173).

Another story called, “Imposter Syndrome and Parenting with a Disability” by writer and activist Jessica Slice who has Ehlers-Danlos syndrome focuses on her self-worth in regards to motherhood. She expresses in the piece that she is often unable to provide for her son in a way that other mothers based their identity of motherhood on, mainly in regards to physical activity. However, Slice gives the perspective that although she may not be able to pick her son up or drive him places, she is able to give him the emotional attention and steady presence that the children of nondisabled parents often lack from their caregivers. She writes that, “Love isn’t a collection of capacities, of practical contribution” (Slice, 132).

One last story overview is about “If You Can’t Fast, Give” by Muslim actress and comedian Maysoon Zayid, who has cerebral palsy. She expresses how Ramadan, or month of fasting that takes place yearly in Islam is not a requirement for people with disabilities or illnesses to undertake. Despite this, she chose to participate for as long as her cerebral palsy allowed. When the time came that she couldn’t participate for serious risk of her health, she decided to instead follow the tenants of her religion by making donations to charity in place of Ramadan, instead of feeling ashamed that she could no longer participate in the way she wanted to. Zayid states, “Muslims fast so they can suffer a little. It is important not to die in the process. Instead, those who can’t should channel their devotion into charity. This will not only help you stay healthy but also will help someone who is genuinely suffering” (Zayid, 38).

What each of these stories have in common is the idea that although people with disabilities might not be able to participate in their discourses like their occupations, their families, and their religions in the same ways nondisabled people traditionally do, they still occupy an essential role in their communities and are able to create meaning in ways that greatly improve the world around them. In fact they often do so in ways that nondisabled people either cannot or choose not to. Disability Visibility highlights this idea very well, the only problem I found with the book was that I wanted to hear more than a few pages of the experiences of these disabled writers, and many others with disabilities not mentioned. After all every of the one in five people with disabilities in the United States experiences their disabilities differently, especially within the context of the other parts of their lives. Perhaps a sequel is in order.