"Leading Change"

The final version of Leading Change: A Plan for SAMHSA’s Roles and Actions 2011 – 2014 was released today. On October 8, 2010, what would have been Sekai's 17th birthday, I attended the SAMHSA Open House, and commented on the Strategic Initiatives draft document.

Upon receiving notification that the new document had been posted, I felt excited, pleased, and hopeful, as I remembered speaking about Sekai at the Open House. I felt quite sad, thinking that this came too late for him, that I miss him terribly, that it is such a shame that he is not here to benefit from the changes that are taking place and will take place. I also felt curious, though, and so I did a simple word search based on the points that I made during my comments. (I need to go through my files--ok, piles--and find my notes from that day. I may share them in a later post, or maybe amend this post.) Suffice to say that my comments were based on a Sekai perspective, and included issues such as the importance of using person first language in the document, and the need to include in the initiatives persons who have mental health disorders in addition to other disabilities and persons who have had involvement in the foster care system.

Many others commented on the draft document during the Open House, and there were multiple other opportunities to provide feedback, such as by calling in, emailing, and using an online forum, and in posting the document on Facebook, SAMHSA commented, "Thanks for all those that provided feedback during the commenting period. Your input was essential to the new iteration of the Strategic Initiatives paper." So while I am not at all trying to take credit for the changes that were made, I am grateful to have been one of the ones who spoke up, grateful that we were heard, and grateful to have been able to speak up in the name of my beloved Sekai.

Back to that word search. Here are the terms that I searched, and the number of times that they appear in the draft and final documents:
“foster care” Draft-3 Final-4
“disabled” Draft-2 Final-0
“other disabilities” Draft-0 Final-1
“with disabilities” Draft-5 Final-11

The increase in the use of the term "with disabilities" is really significant to me, not just because the increase was so great, but because of how and where the term is used...especially here:
Goal 1.3: Prevent suicides and attempted suicides among populations at high risk, especially military families, LGBTQ youth, and American Indians and Alaska Natives.
Objective 1.3.1: Improve mental, emotional, and behavioral health and well-being among military families, youth, American Indians and Alaska Natives, ethnic minorities including Latina girls, LGBTQ youth, people aged 45 to 65, and people with disabilities.

CP Awareness

March 25, 2011, has been designated as National Cerebral Palsy Awareness Day. Please consider taking this opportunity to learn more about cerebral palsy (CP) and the people who live with it. The full text of the bill is available here: http://www.govtrack.us/congress/bill.xpd?bill=sr112-75

Write now

Apparently I haven't posted in four months. Wow. It isn't that I haven't been thinking about Sekai, or making notes of things to write about, things to research. I actually had many, many notes saved in my phone: quotes from TV, movies, books; findings from research studies; musings on interactions with others; questions that come to mind; and on and on. Then my cell phone--where I had kept a lot of notes--completely stopped working. Tonight, I discovered that the DVR that I was using to save the TV shows and movies that I wanted to write about has been completely wiped out. When my cell phone wiped out, a friend said maybe Sekai was trying to tell me to not say anything. I don't agree with that. To me, it was a reminder to do what needs to be done, and to not wait.

Yesterday, I had a serendipitous conversation with a woman in line at the shipping store as I was mailing off an application for a postdoctoral fellow. Her adult daughter has autism. I'm not exactly sure how or why she chose to start talking to me, but we ended up having a long conversation about autism in particular, disability in general, and how people are treated who have disabilities. No, I didn't tell her about Sekai, specifically. Her eyes were already red, and I was concerned that she was going to start crying about her own daughter, and since she said they had an important meeting the next day, I didn't want to upset her any more than she seemed to be already. But when she asked me why I was applying for a postdoc ("But you have a PhD. Why do you need to do that, too?"), I explained that by the time one gets to the dissertation, one's focus has to become more and more narrow, and this particular postdoc would give me the opportunity to widen my lens again, conduct research, teach, and write. She asked what I wanted to do with my work, and I told her. So yes, I did tell her about Sekai, because I told her how I want to make a difference for children who have disabilities.

At the end of our conversation, we both smiled, and shook hands. She seemed encouraged. I was as well, especially when she said, "It sounds like you're on your way to being a leader in changing the way people think." I hope so. In the meantime, I will keep thinking all of this through, and keep writing...and hopefully posting more.

For traumatized folks who have considered suicide

A few thoughts on the film For Colored Girls, as viewed through a Sekai Perspective. After all, that is the lens I use now.

Initial thought (excerpted from my Facebook post), on Saturday morning, after crying all the way home and going to bed early on Friday night:
At one point, my heart was beating so hard... I should have reread the choreopoem. I had completely forgotten "a nite with beau willie brown". Incredible movie. Critics say we don't need another movie about trauma in the Black community: No. We need less trauma in the Black community, in all communities.

Another thought (also excerpted from my Facebook post, and additional thoughts based on friends' comments, and my responses to their comments):
I'm not sure why this is bothering me. I don't even know Tyler Perry. Anyway. Tyler Perry did not write and did not direct Precious. He produced (i.e., funded) it. Sapphire wrote (in 1996, might I add) the book Push: A Novel which serves as the basis for the film. Tyler Perry also did not write For Colored Girls. He did direct the film. (I think he did a good job, all in all, but that is not what this piece is about). Ntozake Shange wrote the choreopoem for colored girls who have considered suicide/when the rainbow is enuf (copyright date: 1975. 1975!). If art imitates life, and Black women created these pieces, why are folks ticked with Perry, but not about these experiences?

I cannot find the actual quote that I was looking for, but this situation causes me to remember when folks were all over Tupac Shakur for the lyrics in some of his songs. His response was to say that he was writing about what he saw, what he lived ("I'm a reflection of the community" is the closest quote that I can find), and to question why folks were more concerned about the fact that he said it than the fact that he lived it. That is what I have been thinking about since seeing For Colored Girls and reading all these negative reviews and critiques, especially the ones that specifically denounce Tyler Perry.

From what I have heard about his interview on Oprah (still on my DVR, I have not cued it up yet), Tyler Perry believes that we still need to think and talk about these issues because they have not been resolved. Sure, he has his own issues that he is still working to resolve (who doesn't?), but he is not the only one, and his issues are akin to (or exactly the same as) those of so many, too many. At that point, to me, he becomes a voice speaking out about the problem; but for some reason, he is being vilified by so many as if he is the problem. Back to my Saturday morning comment: We need less trauma. That is the problem. We need less trauma. Less abuse and less neglect (of others and self). Less pain, individually, collectively, communally. How do we get there?

If one is targeting a situation or behavior, it seems to me, one needs to be able to define and identify that situation or behavior, the triggers, and the consequences. Abuse and neglect can beget trauma. Poor self-image can beget faulty thinking, poor decision-making, and maladaptive coping skills, which can beget abuse, neglect, and trauma. Mental illness can beget abuse, neglect, and trauma. Poverty, lack of access to quality education, medical care, and social supports can beget abuse, neglect, and trauma. Injustice can beget abuse, neglect, and trauma. Each of these can also beget each of these: abuse and neglect can beget abuse and neglect, and so on, and so on. These issues, among others, are highlighted in the film For Colored Girls, as they are in the choreopoem upon which the book is based. For some reason, though, I have not seen a single review mention any of these issues, or even the fact that the movie is (as is the choreopoem) about the abuse, neglect, and traumatization of a particular segment of humanity. If we cannot talk about it, how will we ever address it, any of it? If we continue to focus our attention on red herrings or avert our gaze out of...what, embarrassment?..how will we ever address it, any of it?

With the publicity around the then-upcoming release of the film, people again turned to Shange for her perspective. In this video, she speaks about her experiences living with bipolar disorder and suicidal thoughts/ideations/tendencies (the latter are my words, not hers; she labels the bipolar disorder and mentions suicide attempts):



In this video, we hear Shange talk about how people told her not to seek assistance from a psychiatrist because a specialist might tell her that she was "crazy". We hear her talk about issues with medications, and determining the efficacy of medications. We hear her discuss her attempts (quoted here with descriptions of her attempts excerpted: "...then I _________.... I tried that a couple of times, and I never got the hang of it. On television, if you ____________ you died. I was really devastated! I thought, why’d you come now? I was almost gone. Another time, I tried _________, but I messed that up, too.... I guess it was not my time to go, not my time to go." Was it Sekai's time to go? Or did he just "get the hang of it"?

How many people are still trying to get the hang of it? Why? What happened to them? What needs were not met? What conditions were not adequately treated? What can we do to help them, to help us?

Why is this not the conversation being sparked by this film?