I went into work today to find an email that included the following:
I am in the process of planning a Diversity Summit, hopefully for next April. My first undertaking is to put together a task force to help plan the summit. I really enjoyed your presentation at NELA.
I was wondering if you would like to be on the task force?
When I recovered enough to do more than make incoherent noises, I obviously accepted. Then I basically spent the day at work trying not to happy cry.
I was recently asked how I got into disability representation as a focused area of interest. The short answer, personal battles with mental health aside, is my mom. I think I've talked about this a little bit before on my blog. Honestly, I'll probably talk about this in the future again as well.
My mom suffered from bi-lateral neuritis and carpal tunnel in both arms, with a very severe flare up when I was little. Actual timing is fuzzy due to my very young age, but I can remember a before and an after, when her health stopped her from taking part in activities she enjoyed. For those unfamiliar with neuritis, it is an inflammation of the nerves causing severe pain and in this case loss of function. As the neuritis progressed the burning pain would fade from her finger tips up her arms as the nerve endings burned out. Ultimately she was left with nearly no feeling in her hands through her forearms, with feeling gradually increasing up her arms and deeper within her arms.
Nerve damage, unlike what movies like to portray, does not simply mean you cannot feel sensations, but has accompanying loss of motor function. I remember being the one to open all of her medication bottles, her beta-testing Dragon Dictate and trying out new adaptive gadgets. I used to massage her arms while she read me bed time stories to help with the deep ache in limbs that had no surface feeling.
Now she was a single mother with significantly limited use of her hands and a significant illness caused employment gap... which meant no one wanted to hire her. So she went and got her Masters and started working as a disability rights advocate. Home conversations often swung towards human rights, ethics, assistive technology, and other topics as they related to her work. I can't imagine access and accessibility not being important to me.
Last year I was given the opportunity to moderate a panel on disability in SF/F at Arisia. Apparently I needed a kick in the pants to actually do something (whoever submitted the panel idea, thank you), but it also turned out I had a whole lot bouncing around in my head relating to the topic. Since Arisia 2016, I've presented at two professional conferences, applied for a grant to create a resource highlighting disability representation in fiction (postive, negative, and in-between), will be moderating a panel again this January on disability in SF/F at Arisia, and will be presenting at another professional conference in the spring.
This diversity summit is clearly not just about disability, but it is including it, and it means so much to me that the noise I've been making has helped raise awareness and consideration. So I'm incredibly happy at this invitation and more than getting the opportunity to present at a conference, I feel like I've achieved something. And maybe the tears aren't completely happy, because I can't tell the person who's really the whole inspiration, but she'd be excited and proud, and I have to admit, so am I.