On Tuesdays Coral, Tate and I enter the hospital to attend Coral’s speech therapy. Each week Margery greets us with a big smile. She is a 97 year old hospital volunteer.
Margery says, “Hi Coral. Hi Tate.” Many times Coral does not turn to look. Instead, she buries her head into my shoulder. It’s a busy hospital entrance. When Coral does turn and look, I help her to wave.
Tate cheerily responds, “Hi, Miss Margery. Look at the LEGO I built.” He proudly holds up his newest LEGO creation.
Every week Margery says, “You have a beautiful family.”
We have spent a good amount of time talking about her life- her many kids, grandkids, and great grandkids (the youngest of whom is 26!). After many weeks I have never spoken of Coral’s differences- Dup15q or the associated characteristics of autism spectrum disorder.
One week Margery asks, “How old is Coral?”
I reply, “Almost 3 years old.” I follow this up with, “She does things at her own pace.”
Margery replies with a smile, “Well, don’t we all.”
I smile at her words. So simple. So true. So quickly forgotten by most people.
I wish everyone could so comfortably be like Margery- inclusive and accepting. She chooses not to view Coral through the eyes of ableism. Ableism is discrimination and social prejudice against people with disabilities. Ableism is pervasive in our society. It is present in people’s thoughts, words and actions- a result of what people believe gives value to a life. In our society, intelligence, success, wealth and power are often seen as the cornerstones to a happy and fulfilled life. As a result, the life of a person with a disability (especially an intellectual disability) is often viewed as less, possibly even worthy of pity.
Ableism is used (without most people even realizing) as an excuse for exclusion. This happens everyday and in all environments. It is everything from the casual, thoughtless comment about someone with a disability to the purposeful, hurtful comment or action of exclusion.
Ableism is one of the largest roadblocks to inclusion for Coral and other kids with disabilities, including autism. It is so unconsciously accepted in our society that people do not even realize that they are a part of the problem. I know that I didn’t.
I often feel like parents have the potential to be the best (or the worst) example to our future generations. In my opinion, what we model for our kids today paves the way for the future generation to rely less on ableism and more on acceptance across interactions with all people, regardless of their abilities or disabilities.
Here are a few things we can do to help kids develop an inclusive mindset unbiased by ableism.
1. Promote positive interactions (play dates, casual exchanges in the community, interactions at school, etc) between kids of all abilities. Do not taint the interaction with your own discomfort, perceptions and stereotypes.
One day I was waiting in line behind a mom and her daughter to check Coral into her therapy. There was a friendly young man in a wheelchair next to us. He often is in the waiting room when Coral and I are there.
He was telling everyone in line about his shoes. “I have new shoes.” His speech was a little difficult to understand but his gestures helped to bring meaning, as he raised his shoe and pointed to it.
I said, “Oh yeah, I see them. Those look nice!”
The little girl, about 4 years old, in front of us was looking at him. Before she could say anything (or even think anything) her mom said, “You can say hi, but don’t stare.” After that, the little girl turned away from the boy and stood by her mom.
With two (most likely) well intentioned but ignorant words- Don’t stare– this mother made something out of nothing. She created a difference and a separation that did not have to be there. She placed her discomfort on her daughter and began to teach her that natural interactions cannot occur with kids who do things differently.
Letting kids interact on their own terms with kids and adults who act differently than expected, allows kids to create their own experiences and to form their own perceptions based on (what will likely be) positive experiences. As parents, we can follow-up social exchanges with conversation.
2. Talk openly with kids about disabilities and differences. Encourage kids to ask questions and to express their feelings, including any confusion.
As Tate grows older, he has more questions about Coral and kids with disabilities.
Questions are important. Conversations teach understanding.
After Tate plays with a nonverbal child or sees a video of a friend’s nonverbal child, he may ask me, “Why doesn’t Joe talk?”
Usually, the conversation we have goes something like this: “Everyone does things differently. And that’s okay. Some people communicate in ways without using words, like signs or pictures, like Coral. But if you watch someone closely you can usually get clues into what they are trying to tell you.”
As kids grow and learn, they experience cognitive dissonance in certain situations. When kids receive new information that challenges their existing beliefs they may find themselves in a state of cognitive dissonance or disequilibrium. They are motivated to better understand that which is causing confusion.
Currently, Tate is in a state of cognitive dissonance surrounding his understanding of Coral’s age and what she can and cannot do. Tate has been observing how infants and toddlers much younger than Coral can already do things that she struggles with. He may say, “Baby Jill already walks so good.” Or he may share, “Liz is two and she can already walk and talk.”
I usually respond with, “You’re right, Tate. Most kids do walk and talk when they are two years old. But not all kids. Some kids, like Coral, need more help to do these things. And that’s okay.”
I cannot “fix” his dissonance, as he develops his perspective on why some kids move, talk and act very differently than most other kids.
In order for kids to develop empathetic and inclusive mindsets, they have to be allowed to experience cognitive dissonance. When they look outside themselves for a way to build understanding, parents and community members can be models in their comments, attitudes and actions towards people with disabilities. For us to be positive models, we first have to recognize our own ableism- the perceptions and stereotypes we carry with us about people with disabilities.
3. Emphasize equality among all people in ways that relate to kids.
Age is very important to kids. When a group of young kids get together, they often ask about ages before names. For kids to view a child with a disability as an equal, it is important for them to know her age- specifically that she is not “still a baby.”
Tate recently saw a boy in a wheelchair with a tracheotomy and a G-tube who was playing with many of the toys Coral enjoys (infant toys). Tate was staring. I could see in his eyes and in his expression that he was confused by the boy’s behavior. Later, he asked, “Why is that kid still a baby playing with baby toys?”
I replied, “That boy was 10 years old. He needs help to do a lot of things that you do without help. But that doesn’t make him a baby. He is still 10 years old and likes to play with toys, like you do. He just likes to play with different toys than you might choose. And that’s okay. Everyone does things differently.”
It is important for kids to understand that other kids who don’t walk, move or talk in the way we might expect them to- given their age- are not babies. Equality helps kids see value and worth in all life. Equality is important to breaking stereotypes.
Before Coral was born I probably would have been very uncomfortable in all of these situations. Tate would have sensed my discomfort. I would not have known what to say.
As adults, it’s okay for us to not know what to say. I certainly do not know what to say in every circumstance. It’s also not wrong for us to feel certain emotions. However, it is not okay for us to teach our kids to feel the same way we do. If we do that, we are perpetuating ableism. We must recognize our own emotions, the reasons for those emotions and then give kids space to experience the situation in their own way. This is the only way to break the pervasive cycle of ableism and the accompanying devaluation and exclusion of those with disabilities.
When we received Coral’s diagnosis of Dup15q at 3 weeks old, there is only one person who was not covered in a dark haze of perceptions, changed expectations and stereotypes around raising a child with a disability. That was Tate. At 27 months old, he did not have expectations or labels for disabilities. All he saw was his baby sister- “Baby Curl.” He was so proud to be a big brother.
He has formed a relationship with his little sister in a way that works for both of them. It is different from what Tom and I expected, but it is certainly no less valuable. When he looks at me with wide eyes, beaming with pride, and says, “Mama, look! Coral is walking so good,” I see pure acceptance and unconditional love. Coral is his sister, nothing more and nothing less.
Ableism should take a lesson from Tate, other kids and people like Miss Margery. Only then will we be able to create a more inclusive society for everyone.