Good News: You Can View the Longmore Lecture with Alice Wong Remotely!

Visitor — Fri, 23 Mar 2018 22:59:27 +0000

Join us! The 2018 Annual Paul K. Longmore Lecture on Disability Studies will feature an interview with Alice Wong on "Storytelling as Activism: The Politics of Disability Visibility."
Tuesday, April 3, 2018 - 5:00pm-7:00pm (includes reception)
San Francisco State University, J. Paul Leonard Library, Room 121

You won't want to miss this chance to learn more about Alice Wong, Founder/Director of the Disability Visibility Project and co-partner of #CriptheVote. Together we will explore disability justice, savvy strategies for social media, intersectionality, and political engagement through storytelling. This event is free and open to the public, and light refreshments will be served. RSVP encouraged to pklinst@sfsu.edu or (415) 405-3528. Please refrain from wearing scented products, so that people with chemical sensitivities can join us. ASL and open captioning will be provided.

CAN'T JOIN US IN PERSON

BUT DON'T WANT TO MISS OUT ON THE FUN?

We're excited to announce that for the first time, we'll be streaming the Longmore Lecture! Register now: https://sfsu.zoom.us/webinar/register/WN_tZ6NrhItShCA5VhCKTcRQw After registering, you will receive a confirmation email containing information about joining the stream. We recommend you download Zoom in advance if the platform is new to you. Please note, if you are blind and use a screen reader, we recommend that you use the dial-in information to access the live-stream audio rather than the zoom computer link, as it may not play nicely with your screen reader unfortunately. (US: +1 669 900 6833 or +1 646 558 8656 Webinar ID: 761 651 225) If you are Deaf or hard of hearing, please press the CC button once you open the Zoom platform to access the live captioning stream. And feel free to tweet your thoughts/questions with #LongmoreLecture / @LongmoreInst / @DisVisibility

*** This year's Longmore Lecture was made possible thanks to several donors who gave in honor of Nicole Bohn's many years of service to San Francisco State University.

Tags:

#Cripthevote

Alice Wong

disability justice

Disability Visibility Project

Longmore Lecture

social media

When Social Media Lets Us Down: A Search for Community (in all the wrong places)

Visitor — Thu, 21 Jul 2016 23:02:22 +0000

By: Robyn M. Ollodort, Longmore Institute grad student assistant

In an age of technology, sometimes the community we seek is best found in real life.

Chances are good that if you're reading this post, you're online hoping to connect with community. Type the name of one of your identities into a search bar, and you expect to find results that call to you, that draw you in. But what happens when they don’t? I am not an ambassador of the chronic illness brand. I can't run a race to find a cure. I don't own any Livestrong-style rubber band bracelets. I don't participate in hashtagged challenges, ice bucket or otherwise, on social media.

But I am #sick.

I was diagnosed with Ankylosing Spondylitis in the summer of 2012, just days before my 21st birthday. AS is a flaring condition that generally involves the spine, resulting in eventual fusion of the vertebral column or effected joints. But, because I had juvenile AS that went un- and misdiagnosed for at least ten years prior, the effected joints in my body were the sacroiliac and hip. I have experienced the pain and joint discomfort I now know to call 'flares' for as long as I can remember; however, AS in my body does not just mean flares of chronic pain and inflammation. I also experience chronic fatigue as a result of AS, which may be the even more debilitating symptom. I have been tired all the time, for as long as I can remember, and no amount of sleep or stimulants has changed that this far. I have never been an athlete. I was not robbed of my ability to climb mountains. And no amount of healthy eating or exercise will stop me from needing to take a nap OR having a flare. Because, believe me, I have tried.

The thing is, this is not the common experience of arthritis, and I know this, because as soon as I was diagnosed, as soon as I had a term to type into search bars, I wanted to find other people with this disease. Other people who gave themselves shots. Other people with chronic pain and fatigue.

Taking to the internet, I found a Facebook support group, with people sharing their stories of spinal column fusion, childbirth and heredity concerns (AS has a genetic component), and an overabundance of #spoonie and #spondy baby talk photoshopped over generic images of awareness ribbons and nature scenes. This is just not who I am.

And that's what makes it so hard for me to navigate the social media communities of support set up for #chronicallyill people with #arthritis like myself. I was born in the 90’s and grew up with technology; shouldn’t I be able to find the community I’m looking for through it? Especially when it seems like everyone else in their early-to-mid-20’s is doing just fine, connecting over twitter and Facebook groups on all kinds of issues and experiences. Why was this so different?

I’ve written previously about how important I think representations are for identity. I wanted to see people, around me or otherwise, who also have to stab their abdomens with burning serums. I wanted to see people who sneered at running, and curl up on couches with bags of popcorn for Netflix marathons instead. Watching reality TV (a thing I do quite often, and am very passionate about), I was excited when Real Housewives of New York City’s Jill Zarin’s daughter, Aly, had some kind of undifferentiated spondyloarthropathy that no one really talked about, and I watched with anguish as the cast of Shah’s of Sunset doubted Golnessa “GG” Gharahedaghi’s struggle with rheumatoid arthritis and chemotherapy. But I wanted to know people in real life who deal with similar things as me. GG, looking defensive while receiving chemotherapy as treatment for her rheumatoid arthritis. Image found here.

My body betrays me constantly, I can't trust it, and maybe that's not the best way to relate to others. It's not the best basis for connection, the disease that makes me feel trapped in my own body.

But also, what these groups seem to be bonding over (pregnancy stories and decades of anguish in the healthcare system, respectively) were not the things I was concerned about; they weren’t the same questions as the ones I was asking.

Beginning my second semester of my second year of graduate school, I received an email seeking paid interns for the Superfest: International Disability Film Festival. I write about representations in tv and film, so naturally I jumped at the opportunity. In pursuing an interview, I noticed that the ad specified that the participants had to be students with disabilities – the first time my having a disability qualified me to do something special, let alone a major career move! The difference I found between support groups/Facebook pages and my experience with Superfest is that watching the film submissions, we were discussing the deeper issues of the social constructs of disability: how we are seen in society, how we want to be seen, how to make our experiences funny, and political, and REAL. The people I met were like me: college students, with full lives and career plans, and also real, life-changing experiences that shape our views of the world. We take our bodies seriously, and use our experiences of them to inform our political perspectives. Plus, we got to spend three hours a week eating snacks and watching the best movies I’ve ever seen (links direct to curated list of trailers of my favorite Superfest films: Breakfast at Ina's, Neighbors of the Other Type, Underland pt. III, Terminal Device, Supersonic, Awake, respectively)

Now, don’t get me wrong – I’m still struggling to find community, especially in places that I thought it would come naturally; but the critical gaze is much more fun when shared with friends. Author on the left. Image courtesy of SFSU Academic Technology, via Youtube.

Tags:

Ankylosing Spondylitis

Superfest: International Disability Film Festival

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