My Side of the Story
Last week, I read an article about a teenage boy who took a girl to the prom. It was squashed between an announcement about the royal wedding and some pictures of a hairless cat. At first glance, it didn’t seem particularly noteworthy. To tell you the truth, I almost scrolled right past it.
Then I took a closer look, and I read the headline. It said the boy took a girl with Down Syndrome to the prom. The piece talked about how amazing he was—how selfless and kind.
I can’t lie. It touched a nerve in me.
At first, I couldn’t quite figure out why. I mean, what this boy did was very nice, and it was kind.
But it didn’t feel nice. It felt weird. It felt like cloaked within the narrative were seeds of language that suggested a masked benevolence—a self-serving celebration beneath a brittle shell of kindness.
I mean, would it have been newsworthy if he took a girl to the prom who had diabetes?
Or was overweight?
Or perhaps a different race?
I didn’t always feel this way. Things used to be simpler for me. Once upon a time, I probably would have scanned this same article and thought, huh. That’s nice.
Unfortunately, I don’t have that luxury anymore. See, I have a special-needs son of my own now. His name is Jack. He is fourteen, and he has autism.
Can you do me a little favor? Will you take just a second, and imagine how it feels to have to actually praise people for spending time with your child? You know, the child you rocked as an infant and spoon-fed applesauce and waved good-bye on the first day of kindergarten?
The child you think is funny and interesting and maybe sometimes a little pesty, but for the most part a pretty cool kid?
Jack is funny.
He is interesting.
He can be a little pesty, especially when he recites the running time for every Disney movie ever made.
The thing is, he was born this way. He was born with a brain wired for collecting data about movies, and limbs that twitch and dance on their own accord.
He had zero choice in the matter.
He was born different, and he didn’t even know it.
So, what do I want?
It’s hard to say. I mean, like everything that surrounds my complicated child, this issue is, well, complicated.
I know he isn’t easy. He can be difficult to be around at times.
He jumps around constantly.
He thinks the government has created a conspiracy theory about Oreos.
He is very rigid and gets very, let’s say, annoyed if he doesn’t have ice cream every night after dinner.
He will pretend to listen to you talk about things you like to talk about, but really he is just tolerating you until he can get to the stuff that interests him.
At the same time, he is a boy who craves to be like you and me, with our easy laughs and our gentle banter and our calm, still bodies.
He is a boy who wears size 13 sneakers.
He is amazing at the game Twenty Questions. It’s uncanny the way he guesses the right answer every time.
He has no room for small talk. Empty pleasantries are meaningless to him.
No, he wants to dive right in with you, like a swimmer into the deep blue sea. He wants to know if your grandfather went bald at an early age, or if you have ever marched in a LGBT parade, or how you feel about people owning pit bulls.
In the blink of an eye, with just a few questions, he’ll have you thinking about what its like to age, or gender equality, or animal rights.
So, what do I want? I don’t know.
Wait. Hang on a second. I do know.
I want the celebration to stop.
I want people to stop patting themselves on the back for interacting with those who are different. Stop bragging about how your kid eats lunch at school with the girl who has an IEP. Stop using words like little friend. Stop praising one another for simply being good human beings.
Like I said, I didn’t always feel this way. But now I do.
See, a long time I ago I promised myself I would see Jack for who he is, rather than what he has.
Trust me, this is very, very hard sometimes. There are days when the lines get blurred, and I look at my tall boy with his blue sneakers and all I see is self-stimulation and rigidity and conversations about conspiracy theories.
I have to work to peel back the spectrum layer, and remind myself of the child underneath. It is hard. It takes time. It takes patience, and determination, and a lot of energy. I’ll admit it—I don’t always have the right combination of these things.
There is so much I can’t do for this boy.
I can’t make his autism go away.
I can’t make the State of New Hampshire give him a high school diploma, or a driver’s license.
I can’t make a company hire him, or a bank give him a mortgage.
But I can do one thing. I can make sure he travels through life with dignity, and self-respect.
I can make sure this infant I rocked through the night and spoon-fed applesauce even though he spit it right back out and waved to on the first day of kindergarten as the small bus pulled away, knows that he is different, but he is equal.
He is not an act of charity.
He has value.
My son has something to offer. I can’t decide if it’s because of his autism or in spite of it, but it doesn’t really matter.
You would like him. I know you would.
You would like his slow smile, and the way his face lights up when you tell him your grandfather has a full head of thick, curly hair.
You would like how honest, and real, and pure he is.
You will never meet another person like him in your whole life.
Please, try and see our side of the story.
Everybody is a book of blood; wherever we’re opened, we’re red.
June 4, 2018 @ 11:13 am
Bravo, Carrie. Bravo❤️
June 4, 2018 @ 11:37 am
Yes! Yes! yes! Brava Carrie!!
June 4, 2018 @ 11:39 am
Oh you’ve given me so much to think about. I’ve spent the first year of HS thanking kids for being kind to Ben. Hmmmmm. This is very good. Very, very good.
June 4, 2018 @ 1:39 pm
Love this! I too am tired of the articles of praise when people are just being kind. Why is it charitable when someone is kind to someone who is different? I’m all for kindness, but the “pats on the back” for treating people fairly are getting ridiculous!
June 4, 2018 @ 12:50 pm
Very timely. Just had a play date yesterday and, while I’m grateful for the other girl spending time and ‘putting up with’ my aspie, the other girl should be grateful that my aspie put up with her, too. We’ve all got worts! I bet Jack could be fun to hang with. He may come up with the cure for male pattern baldness. 🙂
June 4, 2018 @ 12:53 pm
I agree 100%. In the disability community, there is a term called “inspiration porn.” Often when news outlets tell the story of a neurotypical person doing something “nice” for a disabled person, the disabled person just serves as a prop to make neurotypical folks feel good and inspired.
In these news reports, the disabled person tends to be used as a prop for a “feel-good story”, and no details regarding this individual as a person are provided in the article. The disabled person is almost never interviewed, while lots of details pertaining to and interviews with the neurotypical person are included.
This kind of reporting is rooted in ableism. Ableism is a term that refers to prejudice and discrimination based on a person’s perceived ability to be productive and conform in a society that values productivity and conformity or “normalcy”. In other words, in an ableist society, the worth of a person and respect for that person depends directly on their ability to achieve (academically and professionally) and to fit in.
The more I read about ableism, the more I see how much subconscious, internalized ableism many of us possess. I have been trying to increase my own awareness and to help make others around me more aware of ableism because it plays a direct role in exacerbating someone’s disability. This is in part because disability may be viewed as a societal or a medical construct.
With the medical construct, disability is seen as mostly caused by something intrinsic to the individual (such as a disease, disorder, injury, etc.). With the societal construct, a large part of disability is viewed as a result of barriers that are imposed by society. Hence, the removal of these barriers to access and acceptance should progressively decrease disability.
A very simplified example would be the case of a person who is paralyzed and who has to use a wheelchair to get around. Based on a medical view of disability, the person is disabled because they cannot walk and access a place with lots of stairs. Therefore, their disability would prevent them from working in a building with stairs. However, the lack of a ramp would be a societal cause of the disability, and hence, that part of the disability will be overcome by removing this barrier to access. Nobody would tell the person to try harder to get up the stairs or to try to get some sort of surgery or therapy to try to overcome being paralyzed. Yet, in autism, this is often the case.
In autism, the burden is often placed on the individual, and efforts are frequently directed towards changing the person. Individuals on the spectrum often go through therapies designed to make them look, act, speak, socialize, and think more like the norm. They are often asked to try harder, get more therapy, and to “just get over” sensory sensitivities and “picky” eating and to just go with the flow. Often, privileges are removed if individuals fail to comply, which tends to cause anxiety and frustration.
And then, when the person develops generalized anxiety, low self-esteem, even lower frustration tolerance, meltdowns, depression, and PTSD, they are often told to just get over that, too. Of course, they are expected to be able to get over it with pure willpower and by suffering negative consequences, and not with the help of medications that could potentially positively affect their specific neurochemistry. That is ableism.-
It is internalized ableism that makes us believe that someone can only get to achieve the things they wish to achieve if they act more neurotypically first. It is ableism if we expect that someone can and should only choose the “usual” path to achieve their dreams. We should ask what barriers to access are present, and how do we remove those barriers so that my loved one can live a happy and fulfilled life?
So, yeah, I wholehearted agree with you. We can and should make sure that our loved ones “travel through life with dignity and self-respect.” Why should it be newsworthy that someone chooses to spend time with my child? Why should it be assumed that everybody can, should, and would want to participate in sports? Also, I wonder why should “quiet hands” and eye contact be the norm, and why should someone spend money on so-called therapy that forces a child into complying? This, too, is ableism. The resulting anxiety and self-esteem issues and learned inability to say “no” as a result of forced compliance “therapies” do not decrease disability but they add to it.
I am sorry, this was lengthy even by my standards. Thank you for your time, and thank you for writing about this issue!
June 4, 2018 @ 1:43 pm
Also wonderfully written!
June 5, 2018 @ 9:08 am
Nice reply. More to think about. Thank you!
June 4, 2018 @ 2:55 pm
You have managed to put into words exactly how I feel about those articles! You’re such a gifted and talented writer. Thank you for another important blog, Carrie. Jack is so lucky you’re his mama.
June 4, 2018 @ 6:13 pm
You words always make me think. I think about what my Grandson will think about when he is 14. He is only 8 now but sometimes I just watch him stare off and I wonder what fabulous thoughts are you thinking. Thank you for being you and sharing with me. Kathy
Mary Evelyn Smith
June 5, 2018 @ 10:10 pm
Love this post. I know this is lighthearted but have you seen this SNL sketch from a few years ago? I love it because it addresses this exact scenario in a way that highlights how hurtful the charity/praise mentality can be when applied to people who don’t have a disability. I think it’s such a helpful watch for friends who struggle to understand why articles like the one you mentioned are problematic. https://www.youtube.com/watch?v=PfwwCpAy0-0 Give it a watch if you haven’t seen it.