Thursday, October 30, 2014

And the children shall lead!

(A similar version of the latter part of this blog post also appears on my advocacy blog here.)


I hope you all don't mind me sharing something from a very unconventional little youngest daughter. 

My daughter is six years old. She is a sweet, fun-loving little girl who loves to read, loves to sing, and loves to play. She has an IQ in the moderately gifted range. She is also a little girl of color and proudly Autistic. 

As she has been reading books independently since before she was two years old (she, like many Autistics, was hyperlexic), she took it upon herself a few months ago to dismiss me from my bedroom story duties.  Now she and her little brother, who is four years old, take nightly turns choosing a book. Then the two of them lay down and she reads aloud (since he can't read).

She was very concerned about the book that they read last night. So today she decided that wanted me to send them a letter that she wrote to tell them about her concerns. She emailed the following message to me for me to print out and send on her behalf:

"Can you put little dog in the back so the dogs can be safe? I am six years old. It made me feel confused when little dog sat in the front of the car. If kids read Being Safe they will think that they should sit in the front of the car too. It's that they won't be safe."

She was concerned about a section of the book that depicted a dog buckled in the front passenger seat beside his mother (the "animals" were dressed like humans and were acting like humans as well) while she drove them around in their car.  She wanted them to consider changing that to prevent possible safety problems. 

It has been a rough week. Very rough. But every day I see so many reasons why it is important to continue advocating, continue educating, continue caring about the world around me. I am humbled, and inspired, on a daily basis by so many wonderful people who give of themselves in an effort to make things better for all of us. 

Sometimes my daily inspiration comes from any number of the selfless, dedicated, extraordinary people who are doing amazing things around the world. 

But sometimes it comes from the simple act of a familiar person in the next room, like my baby girl.  She's just a small child, but she's pretty amazing to me actually. So very proud. 

Thursday, October 16, 2014

"Who Really Cares About All of This?" I Do.

"Who Really Cares About All This?" I Do.

She didn't mean any harm, this nice woman who is the parent of one of my children's classmates. I'd contacted her to respond to (yet another) query asking several parents to consider volunteering at a particular time of day.  I gently explained that while I was happy to help out as needed in other ways and at other times, I couldn't commit to this particular task due to other obligations. She seemed satisfied by my answer at the time, but proceeded to bring it up on another occasion (today) while we were waiting for the children to be dismissed from school.

I'd gotten to school early (a rarity for me, lol), so I had a few minutes to spare before the bell rang. She was waiting there, along with another parent. I greeted both, exchanged some polite pleasantries/used my small talk script.  She brought up the volunteering thing again and I politely declined, citing the same reasons that I'd already given her.  Then I whipped out my phone.  I logged on to Twitter, and started signal boosting some tweets about the current #IAmNotKelliStapleton/#WalkInIssysShoes flashblog as well as the upcoming #EndVAWHIV (Day of Action to End Violence Against Women with HIV) flash blog.

After a few minutes, I glanced up and noticed that she was peering (nosily) over my shoulder, looking at my screen. A bit startled, I gave a half-hearted smile, put my phone in my lap, and searched my brain frantically for the appropriate script to use when someone is reading your tweets/posts without your permission. I didn't come up with one, and was trying to figure out what to say when she asked, "So what is this flash blog thing you're writing about, exactly?"


Although that wasn't what I was expecting her to say, I thought it was as perfect an opportunity as any to share. I asked her if she was familiar with autism, and informed her that I was autistic.  We then spent some time talking about autism, and progressed to a discussion of the Stapleton tragedy and the Dr. Phil show episodes. She was familiar with the topics, and we had a relatively decent conversation.

I then segued into how important it was for the public to have an accurate, non-stigmatizing portrayal of autistics and their families - as well as people with disabilities in general. I talked about how harmful it can be when people equate autism to violent behavior, using media speculation over the neurology of people involved in recent school shootings as an example.  I shared how many in our community were hoping that we could re-center the conversation about autism to make it more balanced and more inclusive.

She listened attentively.  Then, with a dismissive wave of her hand and a little laugh, she remarked that she "couldn't be me" because she thought the idea of being involved in activities outside of our children's school was "draining."

"Is all that really a big deal?" she asked.  "I mean, isn't there time to worry about all that autism stuff later? It seems like you're making a big deal out of stuff that's not necessary right now. I mean, when they grow up and graduate, maybe you should do something then," she said.  "I don't think you should be doing flash blogs about stuff going on with people you don't even know.  To me, seems like overkill to worry about that right now; who really cares about all this?"

Fortunately, that was the end of the conversation, because the bell rang and kids started pouring out.  As I walked away, I replayed the conversation in my head, wondering if she feels sorry for me because I think there's a world outside the PTO, class mom duties, and class parties?  She says she "couldn't be me?" I find that ironic, because I "couldn't be" like her.

"Who really cares about all this?" she asked.

Well, I do, darn it.  I do.

I'm not knocking the very important role of parental involvement in schools. Research shows that it extremely important for parents to play an active part in their children's education. I have no "beef" with the PTO; I'm a proud dues-paying PTO member of all four of the schools my kids attend. I've chaperoned many field trips and baked treats for many class parties.

Heck, I drive over four hours a day to three different sides of town to ensure my kids can attend schools that best meet their needs as opposed to just settling with the school that's five minutes away. I help with homework, revise rough drafts, make "flash cards" for quizzes, cut and glue items aplenty for science fair projects. I agree that it's important to be involved in my kids' school affairs.

However, I reject the idea that there's something wrong with caring about things outside of that. I can't fathom what it means to think it's acceptable to ignore the world around me until my kids get out of school. My youngest child just barely turned four; he has a minimum of 14 more years until he is out of school. And as he, like his siblings, is disabled, it may not be in his best interest to finish school in 14 years; he might need to retain public school transition services for 16-18 years. Am I supposed to refrain from any meaningful involvement in life activities until then?

People are being viewed as "less than" NOW.  People are having their constitutional rights denied NOW.  People are being bullied NOW.  People are being abused NOW.  People are being discriminated against NOW.  People are being hurt NOW.  People are being killed NOW.

I cannot wait, and I will not wait.

My strong love for my children and the desire to fight to make this world a better place for them will not permit me to ignore the world around me for years on end until the timing is "more convenient" for me. By the time my kids grow up, many opportunities to try to effect change will have been lost.  The time to DO something is now, not later. Not only so that I can try to make things better for their future, but also so that I can lead by example. They will not always be children; they will one day be adults, and when that time comes, they and their peers will be the leaders, the thinkers, the decision-makers. They will need to know how to speak up - and out - for themselves. But if I - their parent - don't do that, how will they learn?

Until they can speak for themselves, I believe it is MY job, my duty, my responsibility, and my privilege, as their mother, to do it for them. To assert their personhood. To make sure that they are viewed properly and not tokenized and/or stereotyped.  To demand that they are given the rights and dignity they deserve as human beings, regardless of their skin color, the country they were born in, their serostatus, their faith, their gender, their disability status, their neurology, or any other factor.

They need me to do that just as much as they need me to look over their homework, bring fruit for the class party, or check their reading logs.

In fact, they probably need it even more than any of that.

By Morénike Onaiwu

For more flash blog posts, click here.)

Wednesday, October 8, 2014

Standing Tall

In March of this year, a US federal budget was released proposing the October 1st elimination of a program called Ryan White Part D. This program provides family-centered healthcare for ~90,000 US women, infants, children, and teens affected by HIV. As part of a family that would be directly harmed by these changes, I engaged in various advocacy efforts (in conjunction with other concerned individuals and organizations) to oppose the elimination.

One of these efforts was a virtual protest - a flash blog: ‪#‎SaveRyanWhitePartD‬: No HIV+ Women & Children Left Behind, that was held on April 10, 2014 to coincide with National Youth HIV/AIDS Awareness Day. I had seen the impact of flash blogs that had been led by the Autistic community, and I wanted to do the same for the HIV community - to get the attention of Congress and other lawmakers. Wanting a big turnout, I reached out to everyone and anyone to help support the protest.

One of the very first people to volunteer to help was Neurodivergent K (Kassiane). Not only did she signal boost many of the Part D advocacy activities, she offered to contribute to the flash blog. And despite university coursework, a job, and her own health challenges and other responsibilities, she not only contributed a post, she took great care to express herself in a heartfelt and thorough manner that helped illustrate the importance of maintaining the program. I am proud to say that the program was indeed saved from elimination.

Kassiane did not gain anything by participating. There were no perks and there was no recognition. She is not personally affected by HIV and is not a consumer of Ryan White services. Her involvement was purely altruistic. She did it to help a friend, she did it because she cares about marginalized groups, she did it because that's the type of person she is. For no reason other than it's the right thing to do, she gives and gives and gives.

Is she perfect? No; none of us are. But what's most important is that her heart is in the right place; we all misstep. In addition to being a luminary, a writer, an advocate, a mentor, and an educator, she is also a kind person and a loving friend.

Like many others, I am saddened by what has transpired this week; I wish so profoundly that things had gone so very differently than the way they ended up. But it is what it is. And like so many others in our community, without a doubt or hesitation I can say that ‪#‎IStandWithKassiane‬


Radical Neurodivergence Speaking: Save Ryan White Part D Flashblog

When the mob and the press and the whole world tell you to move, your job is to plant yourself like a tree beside the river of truth, and tell the whole world "No, you move."

Monday, October 6, 2014

Autism Defined: A Poem

This is autism.
A world where we are defined as a list of "deficits" and "problems" needing to be overcome. 
This is autism.
A world where our killers can be showered with sympathy and compassion for having had to endure a life with us. 
This is autism. 
Incessant fatigue created by having to navigate societies not designed for us, not respectful of us, not accepting of us.
This is autism.
Being misunderstood. Being judged. Being discriminated against. Being manipulated. 
But this is also autism:
Learning to cope. Learning to stand. Learning to embrace oneself. Learning to live. 
This is autism. 
Originality. Uniqueness.  Sensitivity. Detail. Tenacity. Courage. Truth. 
This is autism. 
Being human. Being accepted. Being loved. Being free.
This is autism. 
A growing community.  Hope. Change. Faith. Surrounded by the love and support that strengthens us.
This is autism.  
The word that allowed me to finally understand my children.  
Finally understand my mother.  Finally understand myself.
Finally know myself.
This is autism.
This is autism.
This is autism.
This is autism.
This is autism.
This is autism.
This is autism.
It is me.
It is you.
It is us.
This is autism.

Copyright 2014 by M. Giwa Onaiwu