Thursday, January 28, 2016

I'm Not A Hero For Loving You

Recently, I was scrolling through my Facebook feed and a page that I had “liked”, a special education advocacy page, shared this image:

(image:  Cloudy/blue sky background with blue text that reads: “Special Needs parents are the equivalent of Batman, Captain America and the Incredible Hulk combined with a side of Mary Poppins).  After text is image of small umbrella.

I left this comment:  “ I'm not special or heroic because I love my disabled child. I don't think it feels very good to be the disabled child who people think only a hero can love either.”

The page then responded to me:

“Many people feel many different ways about being the parent of a child with a disability. Not anyway is right, Not anyway is wrong.”

Okay, but your feelings about disability are never more important than the dignity and humanity of your child.  You can feel however you want about disability.   However, we live in world where casual ableism in journalism, the media, among politicians, even advocacy organizations that purport to serve us is so very pervasive, why on earth would you join with those who see us as less than?  Why would you take their side over your child’s?

Imagine what it must be like to see that as a disabled child.  Your parent couldn’t possibly love you without super powers or magic?  What the hell kind of message is that sending?  Do you think that you will help disabled children become accepted, loved, valued when that is how you talk about them?  

I love my kid and I am not a hero.  I face ableism and hate with him every single day because I know that we are a team and I will always fight alongside him against the things that make his life harder.  Who he was born to be, disabled, autistic, that is not a problem.  The problem is how other people look at him as less than, who judge him based on the labels he carries and don’t think those labels could ever possibly be a source of pride for him.   

If you parent a disabled child, you are not a hero.  You are not Captain America (who by the way, was disabled himself).  You are not Batman or Mary Poppins.  You are not the Incredible Hulk (An incredibly inappropriate and frightening comparison given the amount of abuse that disabled people experience from parents and caregivers.)   You are a person parenting a child that deserves respect. A child who deserves to be loved for exactly who they are because you see the value and beauty in them. Just like any parent should do. Your child's disability does not exempt you from that. Because your disabled child is beautiful and valuable and amazing exactly as they are.  They need to hear that. They need to KNOW that.

I shouldn’t have to tell my child that I am not a hero for loving him.  But I do.  Because he sees images like this and it hurts him.   So, I sit him down and tell him that picture….one from a page of an organization that claims that they want to work for his civil rights is dead wrong.  I am not a hero.  I am just an incredibly lucky human who won the kid lottery by getting the privilege of raising him.  

The truth is that my child is a hero for putting up with bullshit like that every single day and still managing to be proud of the amazing, autistic, disabled person he is.   It’s not an easy task in this world.  

Also, here, I fixed it for you:

(image:  Cloudy/blue sky background with blue text that reads: “Special Needs parents are the equivalent of Batman, Captain America and the Incredible Hulk combined with a side of Mary Poppins text is struck through with red lines.  After text is image of small umbrella. Alternate text reads: Parents of Disabled kids dont' deserve a cookie just for doing their job.).  

Thursday, January 7, 2016

What I Want The Entire Internet to Know About What It's Like To Be Married to a Non-Disabled Person:

This is what it would look like if The Mighty published essays about those of us who live with "non-disability".   It's ridiculous and offensive, but when we do it to disabled people, it's okay? 

I don't think so.   

Here is my "The Mighty" style essay about living with non-disability.:

Image: dark purple background with green round filigree frame.  Green text inside of frame reads: "It must be hard to just do the normal, every day things in your life without inspiring people or giving them the feel goods!"

My spouse isn't disabled, but that doesn't stop him from living his life.  Every day, he is not disabled and he gets up, goes to work, helps out around the house and co-parents our child.  The fact that he doesn't have a disability does not bother my disabled child or myself (who is also disabled).  He goes to work and nobody is inspired by him.  It must be hard to just do the normal, every day things in your life without inspiring people or giving them the feel goods!  

When a disabled person goes to a restaurant and eats a meal alone, you have to constantly be on alert that someone will take your picture or try to join you and then post about how awesome they are on social media. Awareness!  It's so powerful!  My non disabled spouse can go to any restaurant and order food from the menu, sit by himself and not one person will be inspired or "aware" of him.  It must be so hard for him.   But, when you love someone you put up with the fact that they are unable to inspire people for existing or eating food at a place that literally only exists to sell food to people.  

It's sometimes hard on those of us who love him because he just exists and lives his life like a normal person.  When my child and I do the same things, people act like we are shitting rainbows because we're so god damn inspirational.  Not my spouse though!

Nobody accuses him of being "exceptional" or gives him numerous accolades just for occupying the same space as them.  Because my spouse lacks disability, and is an able bodied neurotypical person, the world pretty much caters to him.  He has no need to find creative solutions to the problems encountered by inaccessibility.  He can just go to a place and things just kind of work out for him.   Neat!

It can be hard to live with someone who lacks disability, but we make it work because he has a good attitude about it!  Even though he is non-disabled, he accommodates for it by learning about ableism and not being a colossal fucking asshole to disabled people.