Guest Post: Communicate with Respect for All

I am a woman.  I am a daughter.  I am a sibling.  I am an American and a current resident of Kentucky.  I am a churchgoer.  I am a reader of novels.  I am currently a freelance writer.  I could go on, but each of these characteristics puts me into a type of community, whether geographical or based on interests and skills.

I also have had cerebral palsy (CP) my whole life.  CP is caused by abnormal brain development or damage to the developing brain that affects a person’s ability to control their muscles.  It is a broad diagnosis and manifests differently for each person, depending on the location and extent of the brain damage.  My friend Brandy and I both have CP.  She can walk and I need to use a wheelchair.  I can speak clearly and some people with CP use a communication device.

I don’t usually think about my diagnosis, but I think about being a wheelchair user.  Wheelchair users are in a wide range of circumstances, though, and I often catch myself comparing what other people in wheelchairs can do to what I can do.  It doesn’t make me feel good, because either I’m sad for myself or sad for them.  Everyone’s body has different capabilities, and while you can get ideas from others, until you try them yourself you don’t know what works for you and what doesn’t.

In that sense, a disability journey is a lonely thing.  You learn how your own body and your own mind works, but you can’t fully know what any other person’s disability experience is.  Although each person’s disability experience is different, that doesn’t mean you can’t learn from one another and work together toward common goals of accessibility and inclusion.  In fact, the Americans with Disabilities Act was passed through the efforts of a nationwide, cross-disability coalition. 

When speaking or writing about any disability, it is important to find out how that community refers to itself.  And it is equally important to understand how an individual views their own disability.  As I wrote above, we are the experts on ourselves and have our own viewpoints.  For example, deafness is the inability to hear, but the Deaf community does not see lack of hearing as a deficit.  Since the Deaf have a thriving culture, many of them proudly identify with being Deaf.  Others who are unable to hear choose not to engage in Deaf culture.

As another example, many autistic people prefer that term, instead of “someone with autism” or “someone who has autism.”  Autism Spectrum Disorder is a spectrum of conditions where the brain develops in different ways.  Autistic brains work differently, but many people on the spectrum see their neurological differences as intrinsic to who they are.  In fact, on their “About Autism” page, the Autistic Self Advocacy Network (which is run by and for autistic people) says that “autism is a normal part of life, and makes us who we are” because it “affects how we think, how we communicate, and how we interact with the world.”

The bottom line is that it is best to ask a person with a disability which terms they prefer.  When you do not know someone’s disability status, you can simply state what you can easily observe, such as, “So-and-so uses a wheelchair.”  That way, you’re stating a fact without making any assumptions.  And once you learn someone’s name, identify them that way in speech and writing.  Once you get to know someone, their disability becomes one fact about them and not the totality of their life.  People at church call me Kirsten, not “the woman in the power wheelchair.”  Good communication is key to building bridges of understanding, regardless of disability.  The more we can practice respecting the thoughts, opinions and preferences of others, the world will be a better place.