Understand how life happens for other people

“The bottom line is that we have a basic drive to connect, and that for most humans, it happens naturally and intuitively, and that it feels good. But it doesn’t happen this way for all of us.” –Catherine Faherty

My amazing next door neighbor, Catherine, recently gave me a book that has completely captivated me: Songs of the Gorilla Nation: My Journey Through Autism  by Dawn Prince-Hughes, PhD. 

Given her work around the world with people with autism (including her own book, Asperger’s: What Does it Mean to Me), Catherine was asked to review Songs of the Gorilla Nation – here’s an excerpt from her review:

“Human interaction functions as the universal glue which connects one to another. Most people receive, process, and respond to one another’s facial expressions, body movements, and spoken words, intuitively and automatically. Physical touch, considered to be the most intimate of interaction, soothes and calms; excites and stimulates; inherently carrying meaning and communicative intent. Eye contact is an instant and deep connection. Infants and their caregivers give and receive energy – communicate – from the earliest moments. The bottom line is that we have a basic drive to connect, and that for most humans, it happens naturally and intuitively, and that it feels good. But it doesn’t happen this way for all of us.”

In her book, Dawn Prince-Hughes tells the story of growing up with undiagnosed autism. She struggles to make sense of the world, often feels alienated and fearful in interacting with others, and doesn’t understand why. Nor do those around her feel comfortable—she acts “odd” and they don’t know why either—and avoid her as a result. It isn’t until she finds herself sitting for hours day after day at the primate house of Seattle’s Woodland Park Zoo that Prince-Hughes begins to feel safe.

As Catherine put it in her review, “visiting the gorillas day after day, she quietly sits in her secret world. Slowly, safely, she learns from these captives who, like her, ‘don’t speak the language, look the looks, or move in the right ways’…Dawn, like many with Aspergers, excels at seeing details, and interprets what she sees literally. By keenly observing the ‘gorilla people,’ whom she now acknowledges as family, she begins to understand emotions that had previously been puzzling abstractions to her; anger, concern, humor, motivation, religious sentiment, and to value the feelings of others. Over time, Prince-Hughes got her Ph.D., became a noted researcher of primates, and had a family.”

As Publishers Weekly wrote, “her description of her condition is both delightfully quixotic and terribly sad. Prince-Hughes’s addictions to the smells of purple irises and tin Band-Aid boxes seem harmless enough, but her inability to emotionally connect to other people has terrible consequences.”

I don’t have to think much about social interactions; they just happen for me. For Prince-Hughes, each encounter is measured and planned. For example, she devised a conscious formula for conversation at the university: “a third of the time I talked about my skills, another third I talked about the work of my colleagues and how our interests merged, and the final third I talked about current events and my (softened) opinions about them. I remembered to ask questions about other people’s interests.” She has to consciously remember that formula as she talks. In conversation, she also counts how many seconds to look into someone’s eyes and how many to look away.

It’s important to know that life doesn’t happen the same way for all of us. And while it may be more true for them, that is not only true for people with autism or for people with disabilities: it’s true for all of us. As I make my way through my day, at the library or the grocery checkout, I’m looking at the people around me from inside my own skin, expecting that they will act as I act, and maintain eye contact as long as I do, and laugh when it’s “appropriate” as I’ve determined what “appropriate” is. But they might not. And then what? Do I engage? Probably not. Do I move away? Yes, I’m sorry to say that often I do if their behavior seems odd to me. Do I talk about them to other people? Maybe.

But more often, and even more damaging, when someone else’s behavior seems odd or makes me uncomfortable, I avoid them. Whether they have autism, another disability, or are from another culture with different messages about what is “normal,” the impact is the same. Having read about Dawn Prince-Hughes’ journey changes all that for me, providing a deeper well for understanding differences than I’ve had, even after focusing on diversity issues for all these years.

Often when we’re around people with disabilities (such as these neurological disorders) or around people who are different from us, our discomfort comes from not knowing. Here’s a book that can help us know. It’s important to know how life happens for other people.

~*~ 37 Days: Do it Now Challenge ~*~

Read Songs of the Gorilla Nation. It will captivate, educate, and move you.

Also, I think it is important to use respectful language when talking to or about people with disabilities. Language does matter. Here are some suggestions from an article I wrote for the President’s Committee on Employment of People with Disabilities to educate journalists on how to write about people with disabilities. I think it’s equally useful in everyday interactions. If you find it helpful, please pass the information to others in your organization (a PDF version is available; let me know if you’d like it):

· Use the people-first rule: "the woman who is blind" not "the blind woman."

· Avoid "suffers from," "afflicted with" or "victim of," all of which cast disabilities as a negative and are, in fact, journalistically inaccurate. "Suffers from" indicates ongoing pain and torment, which is no more the case for most people with disabilities as it is for most people without disabilities. "Afflicted with" denotes a disease, which most disabilities are not. "Victim of" implies a crime is being committed on the person who has a disability.

· Do not use "wheelchair-bound" or "confined to a wheelchair." People see their wheelchairs as convenient modes of transportation, not prisons, and the "bound/confined" phrase belies the fact that many people with motor disabilities engage in activities without their wheelchairs, including driving and sleeping. The proper phrase is "uses a wheelchair."

· Use "disability" not "handicap." The word "handicap" derives from the phrase "cap in hand," referring to a beggar, and is despised by most people with disabilities. Other terms to avoid: "physically/mentally challenged" (who isn’t?) "cripple" and "crippled."

· Use "nondisabled" or "people without disabilities." The terms "normal" and "whole" are inappropriate and inaccurate.

· Most disabilities are not a disease. Do not call a person with a disability a "patient" unless referring to a hospital setting. In an occupational and physical therapy context, "client" is preferred.

· Some diseases, by legal definition, are considered disabilities. Victimization imagery ("AIDS victims") or defining the person by the disease ("she is a diabetic") is still inappropriate. Use "person with diabetes" or "people living with AIDS."

· "Blind" refers to total loss of eyesight; "low vision" or "visual disability" is more accurate for people who have some degree of sight. Avoid "non-sighted."

· People who consider themselves part of Deaf culture refer to themselves as "Deaf" with a capital "D." Because their culture derives from their language, they may be identified as you would other cultural entities, i.e. "Asian-Americans," "people with disabilities."

· For people with speech disabilities, avoid "mute," "dumb," or "speech impediment."

· Avoid "deformed," "deformity" and "birth defect." A person may be "born without arms" or "has a congenital disability," but is probably not defective.

· Down syndrome is a chromosomal condition that causes developmental disability. Use "person with Down syndrome." Avoid "mongol" or "mongoloid."

· Mental disabilities include cognitive, psychiatric and learning disabilities and physical head trauma. Avoid "mentally retarded," "insane," "slow learner," "learning disabled" and "brain damaged."

· Cerebral palsy is a disability resulting from damage to the brain during birth that causes muscle incoordination. Avoid "palsied" and "spastic."

· A seizure is an episode caused by a sudden disturbance in the brain. If seizures are recurrent, it is called a seizure disorder. Use "person with epilepsy" or "child with a seizure disorder." Avoid "epileptic," either as a noun or adjective.

· Avoid "dwarf" or "midget." Some groups prefer "little people," but it’s best to use "person of short stature."

· Quadriplegia is a substantial loss of function in all four extremities. Paraplegia is a substantial loss of function in the lower part of the body. Use "man with paraplegia" or "she has quadriplegia." Avoid "paraplegic" or "quadriplegic" as either a noun or adjective.

Published in The Disability Messenger, published by the President’s Committee on Employment of People with Disabilities, copyright 1999 by Patricia Digh