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."


timetolisten.blogspot.com

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