new vid is up ~ SEX WITH DISABILITIES? my lovely friend olivia joins me to talk about her experiences with sexuality and disabilities! tons of info, including:
✔ Stereotypes about people with disabilities
✔ Her successes and challenges with dating
✔ How to accommodate various disabilities during sex
Reblogging this story about #EhlersDanlos I told a few years ago for #RareDiseaseDay
Ten years ago today, I sat in a small windowless office while a doctor told me that I had something called Ehlers-Danlos Syndrome and I’d probably be dead within five years.
I had no clue what it was or what he’d said. I was so overwhelmed that a friend did the initial researching and sent me links. At the time, there was very little information online. The EDNF had an impenetrable web page, there was no NYC support group, and I was only able to find a few people with livejournals. So I signed up for LJ and started connecting.
It’s so different now, you guys. I’ve met so many Ehlers Danlos patients now that I can pick ‘em out by sight. Twitter, Tumblr, MF’in LJ - We’re EVERYWHERE. We’ve got forums and multiple foundations. It’s kind of awesome. I learn so much every day.
I remember reading that most doctors would be lucky to see one patient with EDS during their entire practice. I’ve been mistreated by more doctors than those who’ve helped. It’s been a good learning experience, but I’m glad it’s getting better. We’re still not there, not by a long shot, but it’s a little better.
May is Ehlers-Danlos Awareness month, which meant fuck-all to me when I started hearing about it, around 2006. It was a stressor on the local groups to try and earn money and gain some local media support for the national foundation. I don’t feel that way about it anymore. When I tell people about EDS and the way it affects my life on a daily basis,my life gets better. It helps other people get diagnosed and treated. When I recommend doctors who have been helpful, they see more EDS patients and end up treating me more effectively. The people around me gain a slightly better understanding of my limitations and prioritize accessibility.
It’s better now than it was 10 years ago, but there’s still a long way to go.
If you want to know more about Ehlers-Danlos Syndrome, start here:
Foundations & Support: EDNF Ehlers Danlos Network Cares EDSNYC 2.0**The people in the NYC group made me feel like I was going to get through this. I cannot stress enough how much in-person support has helped.
If you’re down with reblogging for awareness, go for it. I’ll post other EDS things today and this month, too. Thanks for reading.
My son and I have a rare chromosome disorder that I’m trying to find out about.
If anyone else has a 13q duplication, please let me know what you know about it, as all the internet is giving me is 13q deletion (and if it was that, well, I’d not be here, and in turn, my sons wouldn’t be here).
Please signal boost this, so I can figure out just WHAT it is..
13q duplication anybody?
The two professors started building power mobility robots that let disabled children explore their surroundings with greater confidence and independence. But due to the cost and heft of the parts, their early vehicles cost tens of thousands of dollars and weighed up to 150 pounds, making them inaccessible to the families who needed them the most. Galloway’s solution to those problems came to him during a visit to Toys ‘R’ Us, where he saw he could shift his vision of “babies driving robots” to the lower tech “babies driving race cars.” It was then that Go Baby Go was born.
ok, the video has a little bit of an “inspirational disabled kids becoming leaders” aspect to it, but the project is actually pretty cool: using toy store cars, modified with basic hardware store materials, as mobility devices for kids. they’re 1) waaaay cooler than other options, 2) more lightweight and easier to transport, and 3) considerably more affordable.
and rather than making it proprietary, they have youtube videos and workshops and other materials to help parents make similar devices for their own kids.
Actually, I think the video is pretty light on the “inspiration porn”. And I loved the idea at the end that these vehicles give the mobility impaired kids the freedom to misbehave … to “run away” … like other kids do.
you’re right, it’s not really that bad. i was responding mostly to the music and the use of words like “superhero.” but the end is so great! every kid should be able to run away. :)