"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.