Thursday, May 28, 2015

Nice People

I have met some really, really nice people in my community who are involved in disability advocacy. I have met a ton of nice people from my work with the library. Here's the thing though, not every nice person with great intentions are actually helping disabled people. You have to be willing to listen to us, to put your feelings aside and actually think about what you are doing and who you are doing this for. You can't get mad at Disabled people who don't just nod in agreement with everything you say and regurgitate internalized ableism back at you.
The phrase "Nothing about us, without us" is not just a catchy slogan. You can't make decisions for other people without their input. Yes, even when those people are Disabled, Autistic, or even when they are your own children. You can't make our voices second to the voices of parents and professionals. That's not how it should work, but far too often, that's how it does work.
I have to listen to a lot of dehumanizing, ableist, oppressive stuff just to be involved in my community. This is what I have to do to be "included". And when I call people out on the things they are saying and doing "for us", 9 times out of 10, I am made out to be the asshole. When I am just trying to get people to understand and recognize that disabled people, we are people! We are not burdens, we are not mistakes, we are not eternal children who exist as extensions of our parent's suffering.
Some days, it just really gets to me. The people who threaten me, or send me hate mail, I almost have more respect for them because they are at least honest with me. It's the "nice" ones, the ones who condescend to me, who think that I'm too aggressive, too political, too radical, too much of whatever, that just make me feel defeated. It's the nice people who want to cater to parents and professionals, who want to tell me that the only disability in life is a "bad attitude", who think that positive thinking and compromise will remove barriers to equality.
We have so much work to do. So much work to make life better for kids like my son, and the children of my friends and even the children of people who hate me and call me divisive and horrible. They deserve better than this. That will not happen with compromise, or with continuing the narrative that disability is shameful and tragic.
We have so much work to do.

Thursday, May 14, 2015

We Always Liked Picasso Anyway: Acceptance. Love, and Self-care: #AutismPositivity2015

Practicing self care can be a challenge for a lot of Autistic people.  We are constantly told that the way we use our downtime, or the things that we enjoy are not okay.  I have spent a lifetime unlearning how to be my natural self, but the last few years since my son came along, we are learning together that practicing self care in Autistic ways is just as valid as any other way…..

My son is homeschooled and finds learning the most enjoyable when he is allowed to pursue his own interests and build upon them.  Recently, he became interested in learning about notable women and various feminist icons.   I was very excited when he wanted to learn more about Frida Kahlo, who is a favorite of mine!  

He enjoys learning about unconventional people in general, which is why I think that Frida Kahlo sparked his interest.  We talked about some of her paintings and about her life as a disabled woman of color and how all of these intersections impacted her art. We have enjoyed thinking about her symbolism and our own interpretations of her art.   Most of all, we have  just enjoyed looking and the feelings that her art inspires in us.

F’s favorite Frida Kahlo painting, “Self Portrait With Thorn Necklace And Hummingbird”.

We thought it would be fun to take a break from our daily routine and practice a little bit of self care inspired by Frida Kahlo and do our own self portraits.   While my son is a fast worker, I like to take my time, so mine is still not quite finished yet…….

“Self portrait of F in front of a dragon cave with orbs”

Unfinished self portrait of me, a close up of the also unfinished  face because the rest is not anywhere near ready to share!

We talked about the other ways that we like to practice self care.  My son enjoys watching videos of his favorite video games “to get better at them”.  He like snuggling with his cat, Sweet Dee, and playing Scrabble with me in our quiet place.  

Our Scrabble board, where we don’t care about rules and “gigapyro” is a legit word

1896995_10201987527584507_884493776_n.jpgF, snuggling with Sweet Dee!

Self care= being outside and creating magical spaces like this fairy garden in our front yard.  Yes, fairies are real!

For me, self care is the ability to be outside in nature, hiking in the woods or at the beach and we are so lucky to live near both!

F and I, on a hike last summer posing by a sign near Wallace Falls that says “Come into the light of things. Let nature be your teacher. “ -W Wordsworth

Self care also means surrounding yourself with people who understand you and support you. Just being with good friends or talking to them is a way for me to process and regroup.

My awesomely beautiful friend Leah Kelley and I (with Elmo!)

“Caring for myself is not self-indulgence, it is self-preservation, and that is an act of political warfare.”  -Audre Lorde

Monday, May 11, 2015

Stop Telling My Autistic Kid He is Not Disabled

Many times, well meaning people have told my son he is not really Disabled.  They will tell him he is just “differently abled” or “special”.   They think they are helping him, but they are really hurting him.

Yes, it is true that he is special, and that he has many abilities, but he is also very much a Disabled person.  

Telling him that he is just “different” from other kids ignores the  very real difficulties that he faces and the barriers that society places in front of him.  My child does not see his disabilities as anything other than  neutral  and unavoidable facts.  The stigma that others see in labeling him as disabled is the value that they are placing on the lives of Disabled people.  It has absolutely nothing to do with who he is and everything to do with their own ableism.   

When others tell my son that he is “different, not disabled”, they are erasing an important part of his identity.  It is not the only thing about him, but it is a big part of him.   When they deny this part of his identity, they are teaching him to be ashamed of a part of himself.  They are telling him that there is a part of him that he should not be proud of.  While that may not be the intent, that is the message.  

My son is Disabled and Proud.  He is proud of who he is and of the body and mind that are his own.  He is learning how to make his way in this world, a world that is not as welcoming or accepting as it should be to people like him.   He is learning about things like ableism and oppression and how those things are not his fault.  He is discovering the social model of disability and the neurodiversity paradigm.   He is finding community and friendship with others.   He is learning about Disability culture and Autistic Pride.  He is learning that who he is, who he was born to be is not a mistake.   He is learning of the worth in diversity and the value in each of us.   

People: stop trying to take that away from him.

Telling him that he is not Disabled is doing him no favors.  It is actively harming him.  My son is proud and he practices damn hard in spite of the messages that society is giving him about disabled lives.    

Denying his disability will not remove the barriers that make his life difficult.  It will not change the hearts and minds of those who will see him as less than.  What it will do is teach him shame.  That is not something I want for him, or that most people would think is okay to teach a child.  I want him to grow up strong and proud, and honoring of all the things that make him uniquely him.  

Image: Square with four parts consisting of various disability related symbols including, a person using a wheelchair, an outline of a person's head with a brain colored in, two hands using ASL and a figure walking with a cane.  Text over images reads:  Disabled & Proud