Wonder: The Movie

Many of you are probably seeing the trailer for "Wonder: The Movie" and as a parent of a child with a disability, I would like to tell you why I am so angry about it and why I don't find it inspiring at all.

The entire point of the book "Wonder" was showing that children with disabilities are exactly the same as children who are not. They are not "heroes" or sideshows to be pitied and prayed for. Auggie is powerful and brilliant, but he is also moody and struggles. The other people in the book are complicated and neither perfect or villains. That is what makes it so good.

So, back to the movie. Hollywood has cast a young boy, an excellent little actor, as Auggie. This child does not have a craniofacial syndrome. He has typical physical development. They have used make-up to try to "disfigure" the child's face to imitate Auggie's syndrome. This is outrageous. If you want to celebrate diversity in this world, you cast a child with a craniofacial syndrome. If you think that audiences "don't want to look at a kid like that" during the movie, you suck and have missed the entire point of the story. 

This is essentially able-bodied "black face". They have taken a role where it is a critical plot point that the child has a physical characteristic, and chosen to cast a child without that characteristic and used make-up to mimic it. This was a chance for children and adults with craniofacial syndromes to finally "be seen" and instead, they give it to someone who does not have this condition. 

Miss Kat loves the book "Wonder" but I do not think our family can support this film.

Dumbstruck

I don't want this to be negative at all because this is wonderful for this little girl, but watching this video is a little overwhelming. This little girl was a very good friend of Miss Kat's in Utah. She was in her class from 3 years old and up. This WAS Miss Kat. This is what her life would have looked like if she had not gotten a CI and if we had never moved to her oral school.

It isn't that this young woman can't communicate, or that it is bad that she signs, it is just that watching her...it is so shocking how different Kat's life looks.

Two roads diverged in a yellow wood,

And sorry I could not travel both

And be one traveler, long I stood

And looked down one as far as I could

To where it bent in the undergrowth;

Then took the other, as just as fair,

And having perhaps the better claim,

Because it was grassy and wanted wear;

Though as for that the passing there

Had worn them really about the same,

And both that morning equally lay

In leaves no step had trodden black.

Oh, I kept the first for another day!

Yet knowing how way leads on to way,

I doubted if I should ever come back.

I shall be telling this with a sigh

Somewhere ages and ages hence:

Two roads diverged in a wood, and I—

I took the one less traveled by,

And that has made all the difference.

Our Dinner Table

This is in response to THIS blogpost

I would like to tell you another story about a deaf child. This deaf child is named Susie. Susie didn't get a CI because the Deaf community told her family that Susie wasn't "broken". Susie used hearing aids, but they gave her almost no benefit. She couldn't hear any speech and she couldn't lipread (it is a very difficult skill to learn and Susie's family didn't want to waste their time on it.) Susie's mom learned to sign, it was easy for her. She was great with languages. She quickly learned from a community class and then spent thousands of dollars on community college classes. Dad learned some basic signs.

As Susie got older, she attended a bi-bi school for the deaf. In preschool she had the only hearing parents that signed. When Susie's family asked about her ASL development, they were told that she was "doing great for a child with hearing parents". When the family asked for more specifics, they were told that they couldn't provide them because there are no standardized ways to measure ASL acquisition. There was one, vague checklist.

Susie gained more ASL, and her family worked hard to stay ahead of her. They attend Deaf community events and even switched to a Deaf church. They didn't want to attend the church they had been because the people in the nursery were so negative towards Susie. They said things like, "What is she doing with her hands?" and "She acts like I'm supposed to understand her!" All of Susie's friends are from her Deaf school. She doesn't get to see them much though because they live so far away. Susie's extended family live very close by, and they love her very much, but they struggle to communicate. Her grandparents tried to learn ASL, but struggled, even with a plethora of free resources. Her great-grandparents live nearby too, but they say that they don't want to be left alone with Susie because they can't understand anything she says/signs.

Susie has three girl cousins her same age. When they were young, they were inseparable, but as they get older, they drift apart. Susie's cousins want to play elaborate games that they just don't have enough ASL to explain to Susie. They get signed up for dance and gymnastics classes, but Susie never gets invited to join in. She does attend one Karate class at a gym 45 minutes away from home because that instructor knows some ASL.

As Susie enters Kindergarten, she begins to learn to read. Susie's family is extremely involved in her education, so they ask how it is going with her learning to read. They know that literacy is a huge issue for deaf people, so they want to be pro-active. The teachers say she is doing great for her age. When pressed about HOW Susie will learn to read, the school just answers, "Oh, she has a great first language, she should be able to learn a second language. Susie's family continues to push for more information. They ask, "Since she can't use phonics, (since she has no sound/letter association) and knows no English vocabulary, HOW will she learn to read?" The school finally admits that Susie will have to use sight words. The plan is to have Susie memorize enough words to become a fluent reader??

Susie family thinks they have made a terrible mistake.

This was our experience having a Deaf child who used ASL. It was not all sunshine and roses.

As for today,with her cochlear implants, things are completely different for our daughter. She understands us well, without lipreading, even in a noisy restaurant. We work hard to ensure that we speak one at a time, and "never mind" or "it doesn't matter" are forbidden phrases in our family. Miss Kat has friends who live close by (she had 5 friends sleep over on Friday night) and her relationship with her extended family is amazing. Most important (in my opinion) is that Miss Kat is also a veracious reader. She is at or above grade level in all her academic areas. She is in the Junior National Honor Society and she is starting a teen book club at our local library.

This is not who she would have been without her CIs.