Monday, May 8, 2017

Elsa Sjunneson-Henry Goes to Washington, DC

Image description: photo of Elsa Sjunneson-Henry, a white woman with long auburn hair wearing a
khaki blazer and a print dress. Elsa is using a white cane and in the Rayburn House Office Building
in Washington, DC. On right side of the image are two individuals in the hallway talking to each other.

I went to Washington DC knowing that it would be a mixed bag. I’m a disability activist living and working in New Jersey’s 11th district, as an accessibility coordinator for a constituent led group called NJ 11th for Change. We had secured, after 3 months of asking for a town hall, a meeting with our House Representative, Rodney Freilinghuysen (R-NJ 11). 30 of the 175 constituents whom I traveled with had the chance to meet with him, behind closed doors, for ten minutes in groups of ten to fifteen.
It’s unsurprising just how disappointed I was in parts of the experience.
I found myself standing outside of Senator Tammy Duckworth’s(D-IL) office in a fog. When I stepped through the door, I was met by some very pleasant staffers who asked about my business, and I sort of stammered through what I had come there to say – I was grateful for Senator Duckworth’s work towards better equality for disabled Americans like myself, and I am working as an activist to get better access to reps for disabled people. But I had mostly just come there to say thank you to her. Personally, if I could, but I knew that wasn’t really possible without an appointment and a real agenda.
I didn’t have a chance to meet with her (or any of her staff) but I got a business card, and given that I went there purely on instinct, that’s probably for the best.

I went to Senator Tammy Duckworth’s office in a fog, because my House Representative couldn’t look me in the eye and tell me he cared about disabled people now.
Image description: photo of a group of adults that range in age and gender, most who appear to be white, including Elsa Sjunneson-Henry,the woman on the very right of the group holding a white cane. Some individuals are holding protest signs. This is part of "Fridays with Frelinghuysen," a series of weekly protests organized by NJ 11th for Change that take place in front of U.S. Representative Frelinghuysen's Morristown, NJ office.

He couldn’t give me a straight answer on the one thing I really wanted to know, the thing I asked him flat out. I asked: would he commit to a town hall in person, that was accessible to all disabled people regardless of their disability. Representative Frelinghuysen (R-NJ11) did not give me an answer. Certainly, not a satisfactory one.

If asked to translate what he said to me from “political dodge speak” to English, I’d tell you that what he said was maybe. It wasn’t a yes, it wasn’t a no. He could tell me he had a long history of working with disabled organizations for disabled people of all kinds. He could choke out the word “disabled” in place of handicapped just barely.
Quoting your record at someone asking to be an equal constituent, to your face, is pretty disheartening. I found myself wondering if he even understood what he was saying by not answering the question. Because in not answering, he basically made it an open question of whether or not he believes in my right to access.
Being a disabled woman wandering the halls of the House and the Senate was an interesting experience. It might be the first time that I didn’t feel manhandled. I don’t know if that’s a virtue of everyone being super busy, and therefore not noticing the cane, not bothering to grab my arm because I looked confident and determined, or because they knew better, but I felt strangely at home in those cavernous hallways where people didn’t stare at me.
I thought it would be scarier.
The staff in every single office I entered were polite, I barely interacted with Freilinghuysen’s staff myself because we arrived swiftly and were greeted at the door by our Representative. I think he had hoped that we would be easier to sway to his favor. Unfortunately, we left with unsatisfactory answers to a number of our questions, many of which are questions of safety, security, and happiness.

The buildings were mostly accessible, the people I walked past didn’t jump over my cane, or ask me if I needed help, or stare.

Every single Congressional Aide I met was polite and treated me like an equal constituent.

The only person who didn’t was my actual representative.
So I went to the one office where I could ask some questions of how to enact change. An office where a disabled woman holds the power, and where her staff know the ins and outs of disability, accessibility and governance.
I’m determined to continue the fight, to continue the quest for equal access. I’ve found myself in a position where I’m asking for something I’m not being given. I’m asking for real accommodations, not just for myself, but others like me. I’m asking for accessibility and equality, and I’m not going to stop until I get it.

Disabled Americans are still Americans no matter what.


Image description: Photo of Elsa Sjunneson-Henry, a white woman with long auburn hair wearing
a gray-blue sweater. One hand is tucked under her chin, she is wearing eye glasses and has one
glass eye. Photo credit: Photo by Angela Gaul of Milestone Images 

Elsa Sjunneson-Henry is a half-blind, half-deaf writer of disabled feminist words. She’s written games like Dead Scare, short stories like “A Place Out of Time” and “Seeking Truth,” and nonfiction essays including her guest post on Terribleminds “So You Wanna Write a Blind Character?” She teaches writing disabled characters in fiction with Writing the Other, and speaks frequently on the topic at gaming and science fiction conferences. She is also the assistant editor at Fireside Fiction, where she eats KitKats the correct way. In her “spare” time, she’s actually Daredevil. You can find her on twitter @snarkbat, and at her website

Monday, May 1, 2017

Crip The Vote launches​ UK voting campaign

#CripTheVoteUK in bold white letters on a pink rectangular background. The V in Vote is superimposed on an upside down black triangle

Disabled campaigners are launching a UK branch of international group @CripTheVote (@CripTheVoteUK) to put urgent disability issues on the UK General Election 2017 agenda.

Our launch video, hosted by Eleanor Lisney, is here:

CripTheVoteUK is asking supporters to join in online today and be part of the campaign by sharing the hashtag #CripTheVoteUK, and sharing photos with their poll cards and a commitment to “spend 10 minutes to save 10,000 lives” by using their vote this 8 June.

You can see some here:

“At this point in time, disabled people are quite literally voting for our lives,” said Dennis Queen, a campaigner in CTVUK’s network . “We need ALL voters to know this is an emergency for thousands of disabled people and help us fight back,” she added.

CripTheVoteUK aims to ask voters to think about how their vote affects us, to encourage disabled people, our friends and families to register if needed, go postal if it's more accessible, and USE their vote in the General Election.

Disabled voters, our families, the families of disabled children and close allies make up around half of the voting population - enough people to create a big effect on what happens in the General Election.

Eleanor Lisney, disability activist #CriptheVoteUK, said “ disabled people should make sure they tell the politicians that, for 13 million in the voting age, they make a substantial number. They need to vote in order to get a chance to survive the future onslaught on their human rights.”

CripTheVoteUK would hope to find disability issues on the agenda of ALL political parties, so we will share their relevant material and generate discussion about the issues affecting disabled people, including children.

CripTheVoteUK does not promote any party or group, but we are not non-critical. We also cannot ignore or condone that disabled people of all ages, and our families, have been grossly harmed by the existing government, which has come under investigation by the United Nations and our own Equality and Human Rights Commission, both of whom condemned them for many abuses, including thousands of deaths which could have been stopped.

For example at least 10,000 disabled people have died in the last 7 years (since 2010) within 6 weeks of being declared Fit For Work​, and the government ignored warnings about this in its early stages.

Alex Haagaard, a founding member of @CripTheVoteUK said “The prospect that this government might receive a renewed mandate to continue their harassment, neglect and - in the end - extermination of disabled people frankly terrifies me.”


#CripTheVoteUK is shaping up fast, in keeping with the United Kingdom's typically fast-track approach to elections.

Whether you are in the UK and have a direct interest in disability policy there, or are simply interested from afar, be sure to read the tweets, contribute your own, join the chats, and visit the #CripTheVoteUK social media sites. And of course, when you have something to say, make sure it's included by adding the hashtag: #CripTheVoteUK. If you want to share it with #CripTheVote too, you can always add that as a second hashtag.
black iconic ballot box logo

#CripTheVoteUK - Blog

@CripTheVoteUK - Twitter

#CripTheVoteUK - Facebook

#CripTheVoteUK - Thunderclap

Online campaign ‘could enable disabled people to affect election outcome’
John Pring, Disability News Service - April 27, 2017

What is #CripTheVote – and why do we need it?
Errol Kerr, Verbal Remedy - April 30, 2017