Saturday, July 2, 2016

Finding Dory Disappointment

I'm gonna lay it all out right at the beginning.


I wanted to love it.

The hype was huge.  The disability community was abuzz.

"This movie is going to change the way people think about disabilities."

"Dory's disability is ultimately shown to be her strength."

"Almost every character is this movie is disabled and they are all accepted."

I bought into the hype and I was ready.  I was ready to change the conversation.  I was ready for greater love and acceptance for people with disabilities.  I was ready to love this movie.  I was ready to laugh.  I was ready to cry.  I was ready to be inspired.

I cried alright.

Because I was so disappointed.

The message I heard loud and clear is you can accept a person with a disability as long as they are "too" different.  As long as they aren't ugly.  As long as they aren't dumb.

Nemo is cute, and you hardly notice his tiny fin.  He requires not special modifications to his environment or special treatment to get through life.  Intellectual ability intact.

Same for Hank and his missing tentacle.  Lovably grumpy.  Physical mobility intact. Smart as can be.

Dory, Bailey, Destiny?

They had invisible illnesses.  Physically they looked like everyone else.  None of them are intellectually disabled.  All were deemed worthy of kindness and acceptance.

But Gerald?

He was ugly.  He was implied to be intellectually disabled.  He was obviously different in a big way.

And Gerald wasn't allowed to sit on the rock in the sun with the other two sea lions.

He was violently thrown off the rock by the other sea lions.

Cue hilarious laughter from the audience.

But wait... I'd heard that Gerald was one of the characters who helped save the day.


They needed what Gerald had, his bucket, to save the day.  So they tricked him.  They told him they would be his friend, that he could sit with them if he gave them his bucket.  He happily gave them his bucket and once they had what the wanted they violently chased him away.  His movie saving moment was being gullible and abused.  He was deemed too dumb to simply ask if he would share his bucket.  He was intellectually inferior so how could he understand a concept like sharing.  It was funnier if they tricked him and exploited his friendly nature and desire to be liked.

Cue more hilarious laughter from the audience.

My daughter has Down syndrome.  She has many of the obvious physical characteristics of Down syndrome.  When people look at her they know she is different immediately.  It is not an invisible disability.  People will make assumptions about her intellectual ability based solely on her physical appearance.

And Finding Dory just told their audience that you should accept someone as long as their disability isn't too disabling.  They just told a generation of children that if someone, like for instance my obviously disabled daughter, is too different looking, too ugly or perceived to be intellectually inferior you don't have to be kind or understanding of their differences.  They just taught children everywhere that it is fine, every super funny, to bully them.  You can abuse them for laughs.  It is alright to play tricks on them.  It is just fine to take what they have for yourself if you really want it.  And it is perfectly alright to refuse to sit with them simply because they're different.

Well done Disney.

Well freaking done.

Monday, May 2, 2016

Accidental Ambassador

When I was pregnant with Lily and researching Down syndrome I often saw the same sentiment expressed by parents.

"Going out in public is like going out with a rock star."

And it is kinda true.

Everywhere we go people know Lily by name.

At the school, at the gas station, at the grocery store.

They know her by a name and are always happy to see her.  I will even have cashiers on break stop us as we shop or come by my aisle as I am waiting in line to talk to Lily.  When she is not with me they ask where she is.  I am forbidden to stop at the gas station to buy a soda without her.

She's a rock star.

But with that comes this pressure.

Right now she is precious and adorable and full of smiles.  They are always happy to see her.  Will they be as happy to see her when she is a defiant three year old with (hopefully) word and (hopefully not) tantrums.  When she is a big girl?  When she is a teenager?  When she is an adult?  Will they be happy to see her?  

I feel like every interaction someone has with Lily is a chance to shape how they feel about Down syndrome.  

And I want their experiences to be positive.

So there is pressure.  Suddenly we are DOWN SYNDROME.  And the way Lily acts will become the idea that person has of all people with Down syndrome.

She must be very clean.  Her clothes must be cute.  Her hair must be done.  She must be smiling.

Because if she is perfect they just see a cute kid.

But if she is dirty.  If she is disheveled.  If she is acting like the naughty two year old she is they no longer see a kid.

They see a diagnosis.

They don't think she had to be taken out of a concert to roam the lobby because she is two and there are five other two year olds in the lobby and this is typical two year old behavior.  She couldn't sit through the entire concert because she has Down syndrome.  She isn't dirty because she is two.  She is dirty because she is disabled and no one loves her enough to keep her clean.  Any negative attribute is no longer a typical part of human development.  It is caused by her diagnosis, and her diagnosis alone.

She loses her identity as a human being.  As a person with dignity worthy of compassion.

She becomes a diagnosis.

And it makes me so mad and sad and tired.

Being Lily's mom isn't hard.  Being Lily's mom with the expectations and attitudes of society is hard.