Monday, February 23, 2015

STOP KILLING US/Disability Day of Mourning/#Disabled Lives Matter/#DDoM2015

This post is about Disability Day of Mourning. But before I can post about that, I need to share something else first. I promise you it will make sense when I tie it all together. (At least it makes sense in my head...)

When I think back about some of my thoughts (and comments) from a few years ago, I cringe. "Some things autistic adults say are accurate, but other things are off - WAY WAY off," I remember saying - among other things. (I have long since recanted.) What were these things that I thought were so "off" that were being said by my fellow adult autistics? It was their remarks about parents.  Over and over I read how unsupportive and even abusive parents of autistic (and other disabled) individuals were. How they couldn't accept their children and how they created unpleasant, emotionally devastating environments for them; how disappointed they were that they child wasn't "normal." How little regard they had for their own children and for others with the same (or similar) diagnosis.

"Surely that's a load of crap," I thought. I assumed that these misguided, unsupportive parents must be "few and far between;" there was no way there could be that many "Mommie Dearest" stories. I didn't doubt that such parents existed and I didn't think the stories were fabricated; what I thought was a "load of crap" was that there could possibly be more than a small fraction of people in the world who were actually like that.  

Such horrible families had to be the minority, I thought. My own family was not at ALL like that, and we grew up a poor, black, immigrant family in the Midwest and South. If my family could be loving and accepting, surely the majority of more "typical" families had to be, right?

How very wrong I was. And how I wish I wasn't wrong.




(The following is cross-posted on the Advocacy Without Borders blog here.)


I have began to lose count how many people who are "different" are disrespected, disregarded, and discarded by their "families" for the crime of not being what their parents wanted them to be.  Stuck in a state institution or group home because they have "too high needs." Kicked out of the house for revealing their gender identity or their sexual orientation, or their HIV status.  The statistics on how many individuals who are chronically homeless who meet one or more of these criteria are astonishing.

But those are the lucky ones.

Because there are some even more disturbing statistics: the number of people who are murdered each year at the hands of those who are supposed to love them the most. In many cases, a member of their very own "family." In other cases, a staff person who was charged with caring for them and entrusted with their safety. Whatever the scenario, it is still horrifying. And frequent. And unacceptable.


Jaelen and Faith Edge, murdered by their mother



The following quotes illustrate this situation far better than I could do on my own:


"These acts are horrific enough on their own. But they exist in the context of a larger pattern..."


Ayahna Comb, murdered by her mother



"The media portrays these murders as justifiable and inevitable..."


"The victim is disregarded, blamed for their own murder at the hands of the person they should have been able to trust the most, and ultimately forgotten. And then the cycle repeats."



Mayang Prasetyo, disabled transwoman murdered by her husband




Melissa Stoddard, murdered by her stepmother




"These deaths had little to no mainstream media attention..."


"When these deaths were covered, they were often not given the respect they so deserve..."



Yazmin Payne, disabled transwoman murdered by her partner





London McCabe, murdered by his mother



"Their stories are often riddled with patronization and condescending opinions from reporters...


"Not only does the media often underreport these murders or misgender the victims, but the police often fail to make an arrest or get a solid conviction..."

Bri Golec, transgender teen, murdered by her father



(Quotes obtained from "Disability Day of Mourning" [ASAN] and "BreakOUT" New Orleans LGBT Youth of Color)


Enough is enough today.


Please join us on March 1st as we remember those whom society wants us to forget.  Our Houston event is inclusive of all disabilities; we will honor our both our fallen trans sisters and brothers along with other individuals from the disability community who have been murdered by relatives or caregivers (update: due to inclement weather, the Houston event had to be cancelled). Across the globe we will come together in solidarity to remember their lives and to vow to preserve the lives of others. Not as separate communities, but as one.  Whether at an in-person vigil or via the virtual vigil held annually, we hope you will consider joining us.












Saturday, February 14, 2015

Our Neurodivergent Family's Valentine's Day

(This is also cross-posted on the Respectfully Connected blog HERE.)

In the US, Valentine's Day is one of the most successful commercial endeavors of the year.  In the weeks leading up to Valentine's Day the pressure gradually increases until the big day arrives. Jewelry, roses, chocolate, and stuffed animals are sold in seemingly endless quantities. Dinner reservations book up quickly as do romantic get-aways. Many a marriage proposal is made on Valentine's Day, and it is also a popular date for weddings and vow renewals As all of the commercials, movies, and TV programs that air Valentine's Day specials will tell you, love is in the air - and if you're anybody than obviously you will be spending the evening in heels and a black dress out at a fancy venue with your significant other.

Uh...nope. Not I.

I have never been "big" on Valentine's Day. I recognize that it is a big day (and a big deal) for many. But it isn't to me, and it hasn't been for a long time. Valentine's often looks very different in neurodivergent families than it does in neurotypical families. And that's okay. Or at least, it should be okay.

My Valentine's Day is not going to look very different than my other days. Here are some of the reasons why:


  • I don't really see the "point" of Valentine's Day. I know its origins and everything, but I don't really "get" its relevance. It seems like a duplication of my anniversary. While I'm more than happy to accept a gift for Valentine's ;) I still don't understand the fuss, and I definitely don't like the heavy focus on materialism nor the price gouging that occurs.

  • I don't like crowds of people and Valentine's Day tends to draw large crowds. Everyone (it seems) has chosen to go out for a night on the town, which means lines, traffic, waiting, and over-stimulation. My favorite ethnic restaurants, ordinarily half-empty during off-peak times, become transformed into hot-spots full of so many people that I feel practically claustrophobic.  No thanks.

  • Since nearly "everyone" feels the need to celebrate this day of love, securing a suitable babysitter is extremely difficult.  I am very protective over my children and very particular about who I will allow to watch them. Because of their differences, children like mine are at risk for being harmed and/or abused, or at the very least misunderstood, and I can't risk just letting a random babysitter or child care provider look after them.

  • Traditional/common Valentine's Day activities tend to cater more to those who meet the "status quo' of a "typical" couple: white, middle class, neurotypical, cisgender, heterosexual, etc. And while the activities themselves aren't "bad" things, they aren't what I personally would like to spend a lot of time and money doing.

So how do we make Valentine's Day work in our family? It varies from year to year:

Sometimes we do a family Valentine's Day thing with all the kids while other times it's a couple only thing. (One year I really needed some "me" time, so I spent my Valentine's Day alone at a day spa while hubby kept up with the kids.) Sometimes donate the money that would have gone on buying each other a Valentine's gift on a cause of our choosing. Sometimes we do absolutely nothing! One year we did a service project for a shelter serving women and children who were survivors of domestic violence. Sometimes we dress up; sometimes we do jeans and t-shirts.

Sometimes we exchange gifts with one another. Sometimes we do go out for "Valentine's Day, but do it a few days before or a few days after the actual day to avoid all of the hoopla. Sometimes we cook a Valentine's meal together. One year we shared different Bible verses about love with one another that resonated with us and then discussed how we wanted to make goals for intentional living and radical loving based upon those Christlike examples. Another year we went to Chuck E. Cheese's on Valentine's Day (as it was practically empty, we had free reign of the place with the kids; that was nice).This year we might be going to a movie with the kids.

Whatever you do or don't do, you are just as valuable as anyone else. Valentine's Day is just a day; nothing more, nothing less. You are not less valuable because you didn't get and/or want a dozen roses, a box of chocolates, a teddy, and gemstones for Valentine's Day. And your love is no less special either.

Happy Valentine's Day!




And even more hate...let's fight it with love

After the awful #ChapelHillShooting, a suspiciously timed fire occurred in an Islamic institute in Houston, Texas. And now people are trolling their page making hateful comments. Please see the quote below from Houston minister Lura N. Groen asking for friends to come show them some support. Muslim, Christian, Jewish, Hindu, Buddhist, agnostic, Atheist, skeptic, etc...all are invited. She also shared links to their FB page, which I will place below along with the link to their PayPal and their mailing address.

You can send them an affirming message via their FB page to counter the hate HERE.

And/or you can make a donation to their PayPal account HERE.

And/or get their address to mail a check to help rebuild their facility HERE.


Photo credit:rolalaloves.com

Join the #SaveRyanWhitePartD All-Day Twitter Bomb on March 17, 2015!!!

PLEASE join in a virtual all-day social media event happening the week after National Women & Girls HIV/AIDS Awareness Day. The date is tentatively set for March 17, 2015, but we are open to date suggestions for a few more days as well as co-endorsing organizations, especially HIV advocacy groups and agencies focused on social justice, public health, human rights, etc. We need you!


For the second year in a row, the President's budget has proposed to ELIMINATE targeted services for HIV+ women, infants, children, youth, and HIV affected families served by the Ryan White Part D program. The combined efforts of global community advocates stopped them once; we can do it AGAIN! We MUST do it again!




From midnight to midnight, let's cover Twitter with tweets about the importance of retaining these critical family-centered HIV services, using the hashtage #SaveRyanWhitePartD along with any other hashtags relevant to your particular tweet (i.e. #womenshealth, #girlslikeus, etc). You can also help promote this issue by sharing about it on other social media platforms. ANYONE can participate; it is important to have both people living with HIV and allies involved.

We will be creating some sample tweets and statuses that anyone can modify for their use if they aren't certain what to say. We will also provide some suggested targets if you want to direct your tweets to certain Part D and/or budget appropriations decision makers. (You can create and schedule your tweets ahead of time if you won't have availability on that day; we'll post a link explaining how to do so for those who might be unfamiliar.)

Positive women, youth, and their affected families don't disappear once NWGHAAD has come and gone; and these services shouldn't be disappearing either.  Please unite with us to ensure that these important services remain intact. And please share this WIDELY!

(Want more info? Feel free to visit http://SaveRyanWhitePartD.org for more information on these efforts. Additionally, a great, concise list of talking points created by PWN-USA is available at: https://pwnusa.files.wordpress.com/2014/03/part-d-talking-points-full-3-
25-2014.pdf)



Photo credit: HIV Prevention Justice

Friday, February 13, 2015

#OurThreeWinners Died Because of Hate

This is going to be a very short post. Not because there isn't a great deal to say about the three young individuals in Chapel Hill who were senselessly profiled and murdered for their Muslim faith - there is plenty than can be said. It is going to be short because it thoroughly disgusts me to have to write about these young people in this past tense. They had their whole lives ahead of them. They should still be here, but their stories have been cut short. I don't want to have to write about someone else's murdered children in the past tense. Our society CANNOT ignore or excuse hate crimes as a "quarrel over a parking spot." That is not only nonsense, it's extremely disrespectful to the grieving families. The culture of hate that exists in our nation is what allows such events to continue to occur. It will not stop unless we make it stop.

Photo credit: colorlines.com
Please consider sending a message of support to the two families of #OurThreeWinners. Here is the contact info (given in a Facebook post earlier today):

"Notes of consolation may be sent to

The Islamic Association of Raleigh
808 Atwater Street
Raleigh, NC 27607

You may wish to address your note to the Barakat and Abu-Salha Families."






Saturday, February 7, 2015

Attachment Parenting While Black and Autistic

(This post also appears on the "Respectfully Connected: Journeys in Parenting and Neurodivergence" blog HERE.)

As much as I can, I avoid those types of offices when my younger children are with me. You know the type: quiet, sterile, not child friendly. Offices where food, drinks, and/or electronic devices are not allowed and where a security guard is standing watch glaring at people. That type. I'm an adult, and even I don't like being there, much less my young autistic son and daughter.

But this time it was unavoidable - their presence was mandatory.  I made an appointment for a time in the afternoon that I assumed would hopefully move pretty quickly.  I packed along some toys, books, paper, and crayons, and hoped for the best.

The items I packed amused them for a while. But not long enough. 

My babies tried hard. But it was a long wait, and it was boring. And they are children - and children aren't designed to sit silent and unmoving for long periods of time. 

They weren't unruly. They were just trying to amuse themselves. Trying to pass the time. 

They walked between the rows of empty seats. The seats were a soft faux leather material. They ran their hands along the seats. 

The security guard said no. 

The tables were made of particle wood with decorative metallic pieces at the edges. The shiny, smooth metal felt nice on their hands and made a soothing clinking sound when they tapped their nails on it. 

The security guard said no. 

The floor was cold to the touch and perfect for quietly sliding and for sitting and spinning in place.

The security guard said no. 

The area near the entryway was made out of glass and had a "mirrored" appearance. They were drawn to it. They stood close to it and peered at their reflections as they made funny faces.

The security guard said no. 

They sat back down in their seats next to me and amused themselves by reciting scripts of their favorite children's TV shows and excerpts of their favorite Laurie Berkner Band songs. They swayed and flapped along to the melody of their voices. 

The security guard said no. 

And when I say she said no, I don't mean she politely said no. Each time the "no" was accompanied by an exasperated tone of voice, a contorted facial expression, loud sighing, and remarks muttered under her breath about "bad" children. Followed by a disparaging "side eye" glance. 

Y'all know about the side eye, right? Well, this was no ordinary side eye. It was laden with judgment and hostility. It silently screamed, "You need to control your bratty kids." And it also screamed, "You are an embarrassment to us."

An embarrassment to "us." "Us" being black people - for the security guard, like myself, was black.

We've all heard it. From black comedians to blog posts to casual conversation, there are various places where people remark on what they view is a marked difference between the way white parents and black parents rear their children - especially in the American South. Though a lot of things about child rearing transcend race, there is a sizeable group of people who perceive that black parents often place a stronger emphasis than white parents on the way children are expected to behave in public - and therefore if a black child was believed to be "acting out" publicly, then such a child didn't have the right "home training." The child's "misbehavior" was perceived as the parents' fault (for being too lax and/or ascribing to a "white" ideal instead of instilling "proper manners" in the child).




Though by this point I was very frustrated with the security guard, I could see that my kids were growing weary. Every attempt they had made at self-regulation had been shut down. And not even shut down politely, but with a barely veiled attitude. I felt that I needed to say something, so I decided to confront her respectfully but assertively. My purpose was two-fold. I wanted to stand up for my kids, but I also wanted to make her understand. This wasn't about being a "bad" kid or being unruly for the sake of disrupting others. Maybe if she was informed she would have a different take on things. It was worth a try.

I approached her slowly, stopping at a neurotypically appropriate distance. "Excuse me," I said. "I'm not upset, but I heard what you said. About my kids being bad. I'm not mad or anything, but I needed to let you know you were wrong. My kids aren't bad; they're autistic. They're trying their best to wait here like everyone else, but it's really hard."

The security guard was somewhat light complexioned, and I saw her flush slightly at my words. "I'm sorry for using the word 'bad.'  I didn't really mean 'bad' but it was the first thing that came to my mind. I didn't mean for anyone to hear," she stammered.

"My kids aren't bad," I insisted.

"No, they not bad," she conceded. "They  just…spoiled, right? You're just going to have to teach them how to act 'cause you know people like us can't get away with stuff like they can."

Taken aback at her words, I struggled for a few seconds trying to form my words into a coherent response. Before I could speak again, she continued:

"They always trying to label us with something. Your babies sound smart. And they talk really well too. I bet they not really autistic at all. Don’t let them label your kids. They tried to do that with my son too, and my husband and I told them they didn't know what they were talking about 'cause my son does NOT have no ADHD."

At that moment I heard someone attempting to pronounce my name over the intercom. I hurried away from her and returned to where my kids were seated. I gathered up our belongings and ushered the kids out of their seats so we could walk through the inner set of doors where a woman holding a clipboard was beckoning us with hand movements to come her way.

I didn't get a chance to tell the security guard all of the things that were in my mind.  Such as her calling my kids "spoiled" was not any better than calling them "bad." Neither was respectful, and neither was true. My choosing to utilize a responsive way of engaging with my children that promotes attachment and respects their wishes and their limits is NOT "spoiling" them. It's loving them. 

I also wished that I could have told her that my kids DO know "how to act." They just happen to act differently than neurotypicals do. That even for me (an adult), the office wasn't a comfortable place. It had bright fluorescent lights, really cold temperature, and hallways that echoed - on top of the electronics ban and the (unreasonable in my opinion) insistence on silence. As an autistic woman, it was clear to me that universal design was of little to no priority in this place, and neither was inclusion. Also, I wished that I could have told her that being "smart" and having the ability to express oneself by speaking didn't mean that one couldn't be autistic. And that being autistic isn't a "label" that one should shy away from, but a way to understand and identify oneself. Perhaps it is a form of labeling, but it is a welcome and helpful "label."

I wish I could have told her these things.

But I also wish I could have told her that I knew precisely what she meant by the fact that "we" (meaning people of color, especially black people and most especially black people and other people of color with disabilities) don't receive the same consideration, treatment, or services as our white counterparts. That her observation about how frequently youth of color, especially males, are identified as special education students (and subsequently segregated in too many cases) was correct. And that while my kids' diagnoses were 100% accurate, there is a societal tendency to perceive the behavior ofblack and brown boys as more problematic than their white peers, and that in some cases these biased and inaccurate assumptions may lead to misdiagnoses. And in other cases, it can lead to even more devastating consequences, as we have seen with Reginald "Neli" Latson and others.

I wish I could have told her that on one hand I was both offended and annoyed by her ableism and her stereotyping, but on the other hand I could relate to her being concerned about the lack of parity between how behavior is perceived from one race to another. 

I wish I could have told her how much I disagreed with her, yet how much I also agreed with her.

I cannot tell her.  But I can tell you. And hope that if more people begin to give a d@mn, and as more people call out these disparities, we can begin to see a noticeable difference in the way things are for ALL autistics, regardless of color.




Until then, I have to brace myself, and my kids, for more instances like this. Undoubtedly we will encounter many more people who will make similar assumptions. It's bound to happen again - and again - because we are black, because of our relationship-based parenting approach, and because the behaviors associated with autism are so greatly misunderstood by the general public.

She was not the first, and she will not be the last.


We will just have to be ready next time.