Thursday, July 23, 2015

What My Son's Autism Taught me About #BlackLivesMatter

I want to start by saying that having autism is not the same as being a person of color. The two experiences are apples and oranges. Quantifiably they are impossible to compare well and the point of this post is not to quantify anything but to draw some comparisons and share how my experience raising two sons with autism has opened my eyes to the reality of privilege in the US, the frustration of personal experiences being discredited or mistrusted because they aren't shared by the listener, and the emotional gut reaction to "one of our own" being a target of violence. These realities have been true of me in my journey as an autism mom and I think they are shared by many people of color. What makes these two journeys similar is that they are experienced by people on the "outside" (more on that later); what makes these two journeys different is too long a list to detail but there is one important difference that I want to highlight: autism is considered a neurological disorder. There is nothing disordered about black and brown skin.

Privilege is such a tricky thing to write or talk about. It carries an enormous weight of baggage such that the average listener can have a visceral gut reaction to the word. But it doesn't have to be that way. Acknowledging the presence of privilege is not to say that any one particular person is racist or exclusionary. For the purpose of this post I will say that it is the delineation between an event, service, or commodity being developed with or without you in mind (it is so much more than that, but this one aspect represents a way that autism families experience it). For instance, our family recently attended Vacation Bible School at our church. We reached out to the organizers to make a way for Liam, who has communication and potty training delays to be included; Nathan served in his classroom to be his personal helper. The event was not designed to accommodate an individual with Liam's needs so we had to work to find him a place. He would most likely not have been able to attend if one of his parents had been unable to volunteer, a demand which was not placed on most of the families who attended. On the first night VBS kicked off with a Family Fun Night complete with face painting, inflatables, and a shaved ice truck. Despite the work we had done to include Liam and both Nathan & I being present, that first night was a disaster for us and we had to leave early. Liam desperately wanted to go on an inflatable but the line was long and he was unable to tolerate the wait. Rest assured we are working with him to develop waiting and turn-taking skills but that was simply not the appropriate time to hammer in those still-developing skills. Afterward I suggested to one leader that in the future we provide "Special Needs Passes" for families that have kids with special needs. Such a pass would allow families to proceed to the front of lines. Such a pass would have allowed us to join the activities of that first night. Here's an example of privilege at work: the night was designed with the "typical" family in mind and since our family is not so typical it wasn't something we were able to participate in. Please know that the leader I spoke to about the special passes was very receptive to the idea. I know that some of these issues are growing pains and not the "fault" of any one person. WHICH IS WHY THIS IS A PERFECT EXAMPLE OF PRIVILEGE. No one intended to exclude our family, but without intentional effort to include our family, it was inaccessible to us.

I share pretty openly about my experience raising sons on the autism spectrum. Since ASD is so thoroughly misunderstood and misrepresented by the media people often have a hard time understanding the specific difficulties we face. In many ways the challenges of autism seem like exaggerated versions of the challenges all parents face. So when I share about the meltdown Liam had over his hair getting combed, it's not uncommon for me to hear something like, "Well, that's something all kids struggle with." On the surface, that's true. A child having a hard time getting their hair combed is not rare. But this is where a careful listening ear and some trust can go a long way. When I say, "meltdown" what I mean is that he was INCONSOLABLE. That morning we attempted to comb his hair for approximately 30 seconds. He cried the whole way to school and for at least an hour after he got there. Sometimes I feel this pressure to word things in just the right way, to share just the right stories or my experience as an autism mom and my role as their advocate will be discredited. I can't help but think that people of color must often feel similarly. We place a burden on them to educate us on what they experience then we don't really listen. We accuse them of pulling the "race card." We label them as the "angry black person." We discredit their experiences and their rights to advocate for justice and equality. It is so much easier for me to appreciate the reality that I don't have to share an experience with someone to validate it than it was before I began this journey as an autism mom.

The autism community feels pretty connected. When a child with autism goes missing we are the first to share Amber Alerts. We follow each other on social media to encourage one another and share thoughts and ideas. When tragedy strikes an autism family it reverberates through our community. So in the fall of 2014, just months after my boys had been diagnosed with autism, when there were a few particularly nasty instances of bullying against individuals with autism, I felt the fear and pain in my gut. During the slough of ice-bucket ALS videos, people went through the trouble of collecting a bucket of urine and feces just so they could dump it on someone with autism. A girl lured a fellow high schooler to a party so that her group of guy friends could gang up on him and beat him till he had a concussion. In the latter instance it seemed as though the people involved would not have charges brought against them for their hateful violence. My heart and mind cried out for justice. I felt sick to my stomach, full of fear and anger at the thought of that being my James or my Liam in 10 years. At around the same time the Eric Garner and Michael Brown cases were all over the media. And then I understood. At least in part. If people were targeting kids with autism and not being brought to justice and this was more than one isolated incidence.... I would be in the street. I might riot or tear something down. I would most definitely protest. I would make sure people knew. I'm not saying any of those reactions are the most sensible or moral things to do. I'm just saying I wouldn't stand for it. The Momma Bear in me would be wakened. I would be angry. And I hope, I really really hope that you would be angry with me. Would you stand with me? If kids with autism, kids just like my James and my Liam were being brutalized for no good reason with no legal ramifications, WOULD YOU STAND WITH ME AND CRY OUT FOR JUSTICE?

And this is why I have to speak out. This is why I have to stand up and say, "This is not okay. This is not right. I will not remain silent as this evil is perpetuated." Because for the first time in my life, I understand just a tiny part of the fear and frustration of a black mother. The #BlackLivesMatter movement is a cry for justice. I hear those words as a cry of pain and fear and anger, "We are being brutalized without justice. We can't, we won't continue like this. We are people and we matter." I speak the words as a cry of solidarity, "We won't continue on like this. You are people and you matter. This must change."

I have been hesitant to publish this post for a few reasons. 
1) I'm not a person of color so I really have no place telling you what they think or feel. 
2) I don't want my voice to keep you from listening to an actual person of color (for too long white people have adopted a savior complex that we can fix or save disenfranchised and oppressed people groups). 
I decided to go for it for a few reasons.
1) There are people who know my kids or other individuals with autism who can relate to my words but who have a hard time understanding the #BlackLivesMatter movement. This post is meant to invite those people in and share perspective.
2) What I really hope is that if you find yourself with a new understanding and wanting to know more, that you would begin to intentionally listen to the voices of people of color. Read their books, follow their twitter accounts (@austinchanning, @breenewsome, @mskathykhang are people I follow whose voices I value)
3) I have been afraid to write something as pointed and detailed as a blog post. Despite sharing articles and writing Facebook statuses I have been afraid of what the response to a blog post might be. I think that fear is based in what other people might say or think about me and not in what the Lord has to say about me or what he might be calling me to.

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