Okay, so obviously, my resolution to write once a week went out the window. What can I say? Sometimes writing this blog and thinking about advocacy issues is so mentally and emotionally draining that I need a break. But rather than treat myself like a “bad” special ed student who didn’t meet her goals and must therefore be reprimanded, I’m just gonna get back on the horse.
Some of you may be familiar with an infomercial entitled I am Autism. It’s sponsored by the group Autism Speaks and is part of their campaign against autism, which this group feels is a terrible disease that must be cured. Wrong on both counts, by the way. The infomercial uses a deep, robotic voice to say things like,
“I am autism.”
“I know where you live.”
“I will ruin your marriage.”
“I will make it impossible for your child to go to a birthday party.”
“I will make you cry.”
And more. All horrible, negative, hope-stealing statements that for some reason, Autism Speaks thinks is the best way to raise awareness of the needs of children with autism and their families. Autism Speaks has taken this even further; they actually made a documentary based on these beliefs. Before filming, every family featured was asked to stop all therapies for their children so the kids would “act autistic enough.” In other words, Autism Speaks is not interested in truly knowing individuals with autism. They are not interested in helping, inspiring, or uplifting those people. They are not interested in making their families feel normal and included. This group is instead interested in manipulation, exploitation, and the perpetuation of the idea that autism and other disabilities are blights on society and must be either cured or eliminated.
I have to wonder: how many other disabilities is the world treating the same way? Sure, we don’t have organizations like Blindness Speaks, Deafness Speaks, or Muscular Dystrophy Speaks. At least not yet, and I hope we never do if what I outlined above is what they’d look like. But how many times do we look at families affected by disability and immediately shift into “can’t” mode? We act as if Disability is this monster who sneaks up on families and says:
“I will destroy your hopes for your loved one. I will make it impossible for him or her to get a real education. He or she will spend days in special education instead, performing the same life skills over and over, but I will make sure your child is never ready for anything. I will make it impossible for your child to have a job or home. I will place him or her in an endless waiting game for ‘services’ that never do what they are asked to do. I will bring tears, stress, and anger into your home, and I will NEVER GO AWAY.”
The worst part is, the communities in which families of individuals with disabilities live often perpetuate this view. Doctors and therapists set parents up to grieve what their child will never do, good intentions aside. Teachers warn that students and parents should not get their hopes up about what a student with a disability will accomplish–especially if the person with hopes is the student himself. Pastors, rabbis, and imams sometimes don’t even include PWDs in their houses of worship.
What if, instead, we gave Disability some new lines to say? I would rather hear it say something like:
“I am Disability.
I know I look scary, and it’s true that I will influence, to a degree, what the person with me can do. However, I hold within me many surprises, dreams, hopes, and expectations.
I will challenge you to think in new ways. I will teach you that there are no ‘right’ or ‘wrong’ answers–only options. If I make it hard for your child to write with a pencil, there’s no need to apologize for or fret about that, because there are computers. If I have taken away your child’s physical voice, I can show you how to get it back through assistive communication technology.
I can teach you and your child to stand up for yourselves. Along your journey, you will meet people who believe I am a monster or a disease and that your loved one is infected, defective, or ‘less.’ I never wanted these people to do so, and I am sorry. But I can also teach you to respond to them–gracefully, assertively, and yes, angrily if you must. I will give you and your loved one courage that you never knew you had.
I can give you and your loved one hope. Not because there is a ‘cure’ for me. A lot of versions of me have no cure yet, but that’s okay. I don’t want people to focus on my cure and getting rid of me. I would rather teach persons who have me to say, ‘I have X, but I can still do great things.’ The best part about this is that it’s true. Abby Curran has cerebral palsy, and she spearheads a beauty pageant that helps girls and women who have me look and feel beautiful–because they are. A young man named Tim has Down Syndrome. People who think I’m a diseased monster probably thought he belonged in an institution or a sheltered workshop. He owns and runs his own restaurant, where he serves food and hugs. Because everyone needs warm hugs.
I am Disability. And if you look beyond what you have heard about me, you’ll see that I have much to offer the world.”