What kind of world do we want?
I think about this question every single day, and have for some time. It is one of the questions that led to the founding of the International Coalition for Autism and All Abilities (ICAA) and some of my individual pursuits. I think about the world that I will leave behind when I am no longer here. I ask myself what I have done to ensure it is a better place because I was here for a little while. This has always been within my personality, to some degree. But as an adult advocate and a mom, I think about it more intensely and with a more specific devotion in many ways.
For instance, I want to make sure public schools, public parks, and community spaces are more accessible for people with disabilities, including “invisible” disabilities like autism. I want to see an end to the cultural acceptance of systemic abuse and discrimination. I want to help people to be more educated about differences and how to live not only “tolerantly” but respectfully.
Before I sat down to write this introduction, I came across several new cases and incidents of ongoing disability prejudice in our culture from all over the world. I see these all the time. Hundreds of e-mails come into the ICAA, and to me personally, on any given day. It is impossible to respond to all of them but they are all read, and they’re an important indicator of what’s happening in the world with regards to people with disabilities across the environments of our society.
One of the incidents is a recent Dr. Phil episode in which Dr. Phil seems to be empathizing with parents who want to kill their children with disabilities. He also appears to encourage this same kind of empathy from the audience. The killings are referred to as an act of “mercy.” But whose “mercy” is this? Is it mercy for the murdered child or for the parent killers? In what other situation would this be acceptable? I asked friend and fellow advocate Areva Martin to talk to Dr. Phil about this and let him know the outrage amongst parents, advocates, and people with disabilities. I took this to Areva because, as a frequent guest on his show over the years, I know she has access to Dr. Phil and that he may listen to her. But regardless of how many of us advocates raise our voices, and no matter how many of us sign petitions and share outrage, the Dr. Phil episode, and the many examples of others like it, cannot be erased. We still live in a culture where these attitudes towards people with differences in ability are so acceptable that they’re aired prominently in our media.
The message is pretty clear, even if it is not always so obvious. People with disabilities are portrayed as burdens, as “other” or “less than.” We see patronization, pity, and worse on a daily basis towards people with disabilities throughout the media, and this is shown as socially acceptable or as appropriate, expected behavior. On the Dr. Phil episode, Ms. Annette Corriveau is interviewed and talks about why her two children with disabilities should be, in their words on the show, “euthanized” (killed). Dr. Phil polled the audience to see whether they agree with her right to kill the children or not. Dr. Phil estimates the audience is 90 percent in favor of so-called mercy killings of those in conditions such as Janet and Jeffery’s.
Popular television shows, movies, or respected television personalities like Dr. Phil guide and direct our society about how to react, think about, or treat people with disabilities. We cannot really be shocked, then, when teachers, principals, or other school officials abuse students with disabilities throughout our school systems. Or when peers bully and tease kids with disabilities in schools for riding the “short bus,” or for being in the “retarded classroom.”
I remember when I first told one of my friends about my child’s autism diagnosis, he said “I’m so sorry.” I wasn’t too shocked because we have all lived within this culture saturated with examples of how being disabled or having a loved one with a disability is “sad” or inconvenient, even a tragedy. Even when we are a person with a difference ourselves, we have still lived in this world of lowered expectations, of “can’t”, or we are ignored altogether. The only thing that shocked me in this instance was the fact that my friend is someone I highly respect and someone who is otherwise a very intelligent, thoughtful, and insightful person. Saying “I’m so sorry” was honest enough, but also felt like just a quick reply that has been deeply entrenched in our culture’s lexicon as “appropriate” when discussing any disability. The words, “I’m so sorry“, felt like an expectation that I, as the parent of a child with this difference, should need and appreciate pity from others, including my friends.
Think about how many (or how few) beautiful women are on the covers of magazines with visible disabilities? How many openly, formally diagnosed autistic scholars or businessmen do we read about? We generally only see or hear about the sad, pathetic, assumed-to- be unteachable, or tragic cases of people with disabilities. So my friend was a casualty for just a moment about the way our world portrays, treats, and fails to truly acknowledge or include people with differences in ability.
This is the last step in the acknowledgment of human and civil rights, in my opinion. We obviously have learned over the years that gender differences, sexual preference differences, color, race, or religious belief differences are not excuses to abuse, discriminate, or segregate. However, it happens every day, out in the open, for people with different abilities. Sometimes we don’t even notice it, even as we participate. We have to ask ourselves one very important question and we have to be honest with ourselves as we answer. Is this the kind of world that we want?