Saturday, June 10, 2017

Guest Blog Post: Taking Ownership of Our Advocacy Successes

Image description: A black and white image of Liz Jackson, a woman in the Women's March NYC crowd wearing a black leather jacket with a sign attached that says YES WE CANE! and #CripTheVote

Taking Ownership of Our Advocacy Successes

By Liz Jackson

Why do we tell our stories? Why do we open our lives to political fodder? Why do we willingly risk becoming the next inspirational meme? Why do we pour our hearts and time into writing and advocating, only to be drowned out by the latest sensational news.

It may be time to start thinking about this question, because our stories have finally begun to drive our narrative, which means our narrative is finally driving our policy. Yet the political capital we have begun to build excludes is in deeply fundamental ways, even while the outcomes are created to include us. I recently had an advocacy success that increased my desire for disabled policy makers and representatives in the highest reaches of government. I hunger for fellow disabled leaders that we can entrust our stories to.

On March 13th, I was surprised to receive an email from Frederick Riccardi, Director of Client Services at the Medicare Rights Center. It had been well over a year since our last correspondence. This is what he wrote:

I hope you are well. CMS has released some new information that can eliminate Medicare Part B penalties and provide equitable relief for individuals who retained Marketplace coverage and did not enroll into Medicare. This is a time-limited opportunity. If interested, please reach out and we can chat.

I met Fred after being featured in a  November 6, 2015 New York Times article titled ‘New Yorkers Face Hard Decisions After Collapse of Health Republic Insurance’. It was through the process of trying to find a new marketplace plan that I discovered I was no longer eligible for the subsidies I needed to afford one.

I have been on Social Security Income since waking up to a complex neuromuscular condition in March of 2012. It takes a few years for Medicare to kick in, but when it did, I opted out. My reasoning was simple; some of my doctors that were covered under Health Republic weren’t covered on Medicare. At the time, I had no idea I was only declining Part B, that I was still on Part A. And because the government found Part A (hospital stays only) sufficient for disabled and elderly people, I couldn’t receive the subsidies I needed to afford ACA insurance. It was a fiasco.

With Fred’s support, Senator Gillibrand’s team wrote a letter to the Social Security Administration requesting equitable relief so that I could enroll in Medicare Part B. The request was quickly declined and by early 2016, I gave up.

So when his email showed up in my email a few months ago, I recall feeling a sense of frustrated amusement. Disenfranchisement emboldened me to get off social security. I felt entrepreneurship was the best route to securing financial independence at my pace. It has been the greatest struggle of my life. We all know there are few, if any resources for disabled entrepreneurs. And so I have taken to calling myself a ‘Social Security Entrepreneur’.

Last week, Fred called to finalize my coverage. Before we hung up, he said something that I am still struggling to comprehend. He said he believed that the work I did to get my story told may have ultimately led to this equitable relief opportunity. He said my entire experience is a great example of how policy can work.

Think about how many disabled and elderly Americans are on Medicare Part A but not Part B. Any of those people who sought coverage from the ACA Marketplace are suddenly eligible for Part B. Could my story have really played a part in that? I’m finding this a bit painful to process. Yes, painful.

I am an advocate at heart. So much so that when I created my organization, I designated myself ‘Chief Advocacy Officer’. It is my wish to formalize the role of advocacy in business and in government. We live in a divided society. But one thing we all have in common is the ability to raise our voices and elevate our experiences to make the world better for the next person. This is what advocacy does. It is my genuine belief that advocacy drives policy and policy creates (when it’s not just responding to) change. It matters not what side of the aisle you fall, but your understanding of policy makers and what drives them.

I think to myself, how good must it feel to be a Fred or a Senator Gillibrand or a decision maker at the SSA and participate in something that improves a life? Or millions of lives? Is the advocate allowed to share those feelings? Is the journalist who wrote about it? #CripTheVote is based on the most basic principles of inclusion and yet, I can’t help but notice the fundamental disconnect between what we’re fighting for and how we ultimately achieve it. So often the process of enacting policy requires the exclusion of the people who drove it and will ultimately benefit from it. Success means being included by the policy and excluded by the process.

Policy makers aren’t aware of issues unless they hear the stories of lives touched or overlooked. My story is one such story. Yours may be too. And the murk around whether or not I had any impact means advocacy successes don’t feel big and linear like you’d expect. I don’t know who wrote this brief, who fought for it, who ok’d it, who touched it. But I know it happened. Advocates tell their stories, but they don’t get the whole story.

Easing a struggle doesn’t ease the struggle. I am still scrambling to make rent and fund my life. The is a massive gulf between financial relief and financial stability. Am I feeling the relief? Yes. Does it help me survive? No. Yet, this equitable relief opportunity may be the greatest success of my life; how can you top lives spared?

And that’s not all. #CripTheVote knows if repeal and/or replace passes, we will be the first to lose coverage and lives. How can I look to at my newfound coverage as anything other than something that can now be taken away? I’ve have lost so much, and suddenly I find it more threatening to have coverage than to not.

Finally, I now worry that I have failed. It took almost three months and some blatant nudging from Fred for it to dawn on me that this is real. That it impacts both my life and the lives of so many others. Three months is a long time when you realize the Equitable Relief period ends on September 30th, 2017. I feel such pressure to get the word out. As a disabled person, I have grown disillusioned by awareness campaigns. We are so often inadvertently silenced by groups that aim to raise awareness in our best interest. But this is different. This isn’t raising awareness that we exist. Getting the word out about this opportunity is raising awareness that something exists for us.

Looking back, I believe one of the reasons I initially rejected Medicare was due to a fear that I would fall further into a system that has left me feeling trapped. But now I see it a bit different. I can see my neurologist. I can see my general practitioner. I can get poked and prodded and zapped and cared for. My newfound health coverage is the first step in finding my way toward financial stability and independence. And I’m going to remind myself that this is how Social Security Entrepreneurs succeed; not in spite of our disabilities, but because of them.

As we continue to build political capital, we need to make sure it’s not just that our stories are told, but that we’re able to take ownership of them. Not only must we elevate our voices, but we must elevate those who have the passion to listen and treat them as their own. We have come a long way in such a short period of time. We are creating change and shifting the narrative. But we are more than just the stories that drive the change. It is my hope that through #CripTheVote, we will start to find more disabled representatives who will enact the policy our stories shed light on.

About Liz Jackson

Image description: Headshot of Liz Jackson, with olive skin, short dark hair, light pink glasses, and smile for days. If you look closely, there’s a burn mark on her lip. That came from a marshmallow.
Liz Jackson is the founder of the Inclusive Fashion & Design Collective, an ecosystem of products, ideas and people who prioritize the exception rather than the rule. Our mission is to increase the impact of beautiful, functional products in our everyday lives and in the global economy.

After a chronic neuromuscular diagnosis in 2012, Liz began to wonder why her eyeglasses were fashionable when her cane and all other assistive products were stigmatizing. The IFDC supports designers and retailers in the making and marketing of products for all needs.

Twitter: @elizejackson @IFDC

Tuesday, June 6, 2017

6/11 #CripTheVote Chat: Political Coverage and Disabled People

Yellow graphic with black text that reads: #CripTheVote Twitter Chat, Political Coverage & Disabled People, June 11 2017, 7 pm Eastern, Guest hosts @VilissaThompson @realsesmith @anamariecox

#CripTheVote Twitter Chat
Political Coverage and Disabled People
Sunday, June 11, 2017
4 pm Pacific / 7 pm Eastern

We are certainly living in some interesting times. With a little over 100 days in office, the co-partners of #CripTheVote, Gregg Beratan, Andrew Pulrang, and Alice Wong, are hosting a chat looking at the coverage of disabled people in the media, specifically political coverage (e.g., safety net, education, housing, AHCA, proposed federal budget). We are thrilled to have three fantastic journalists and writers as our guest hosts: Vilissa K. Thompson, s.e. smith, and Ana Marie Cox.

Nearly every story on disability issues has examples of how preconceptions about disability affect how it's talked about, a recent article on Social Security Disability Insurance stands out ... as do a number of responses to it:

Generations, disabled: A family on the fringes prays for the “right diagnoses”
Terrence McCoy, Washington Post - June 2, 2017

The Washington Post’s Reporting on Disability Is Giving Trump Cover for Disability Cuts
Rebecca Vallas, TalkPoverty - June 2, 2017

The Washington Post’s Distorted View of Rural Disability
Stephen Kuusisto, Planet Of The Blind - June 3, 2017

The Washington Post just illustrated the biggest flaw in disability coverage
S.I. Rosenbaum, Poynter - June 5, 2017

Generations, Disabled AND IN POVERTY: A Response To The Washington Post
Katie Tastrom, Ravishly - June 5, 2017

How to Participate

Follow @GreggBeratan @AndrewPulrang @DisVisibility @VilissaThompson @realsesmith @anamariecox on Twitter 
When it’s time, search #CripTheVote on Twitter for the series of live tweets under the ‘Latest’ tab for the full conversation.  
If you don’t use Twitter, you can follow along in real time here: 
If you might be overwhelmed by the volume of tweets and only want to see the chat’s questions so you can respond to them, check @DisVisibility’s account. Each question will tweeted 5-6 minutes apart. 
Check out this explanation of how to participate in a Twitter chat by Ruti Regan: 
Check out this captioned ASL explanation of how to participate in a chat by @behearddc

Introductory Tweets and Questions for 6/11 Chat

Welcome to the #CripTheVote chat looking at the recent political coverage & disabled people. 
We are pleased to have guest hosts @VilissaThompson @realsesmith and @anamariecox with us today! #CripTheVote 
Please remember to use the #CripTheVote hashtag when you tweet.   
If you respond to a question such as Q1, your tweet should follow this format: “A1 [your message] #CripTheVote” 
Q1 What are your thoughts on how the media, specifically coverage of politics, covers people with disabilities? #CripTheVote 
Q2 Are descriptions of disabled ppl as ‘vulnerable’ strategic & useful? Other themes you've seen in stories about #SafetyNet? #CripTheVote 
Q3 Are there examples of media coverage of issues such as the #AHCA & #TrumpBudget that concern you as a disabled person? Why? #CripTheVote 
Q4 What are your thoughts of hashtags such as #IAmAPreexistingCondition and social media in the portrayal of disability? #CripTheVote 
Q5 Are there stories, op-eds, or reporting on politics & disabled people that you liked? Feel free to share any links #CripTheVote 
Q6 What's missing, problematic, ableist/sanist/audist in the political coverage of disability issues & our communities? #CripTheVote 
Q7 What stories should reporters to pay attention to now? What's your advice to them on covering the disability community? #CripTheVote 
Q8 Which voices should editors be turning to for disability coverage? Advice to editors about commissioning & editing stories? #CripTheVote 
Q9 How do we get our stories out there? What experiences & lessons can you share with others? #CripTheVote 
This concludes the #CripTheVote chat on political coverage & disabled people. Thank you for joining us. 
Special thanks to our guest hosts @VilissaThompson @realsesmith and  @anamariecox! #CripTheVote 
Please keep the convo going! You can find updates & more info here: #CripTheVote 
Join us on 7/16 for the next #CripTheVote chat on the death penalty w/ guest host @talilalewis
A Storify of this #CripTheVote chat will be up shortly. Thanks again!

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

Monday, April 17, 2017

4/29 #CripTheVote chat: First 100 Days

Graphic with a light green background. In black text: #CripTheVote Twitter Chat 100 Days in Office, April 29, 2017, 7 pm Eastern, Guest hosts @serenevannoy @AditiJuneja3 @RebelWheelsNYC,
Graphic with a light green background. In black text: #CripTheVote Twitter Chat 100 Days in Office, April 29, 2017, 7 pm Eastern, Guest hosts @serenevannoy @AditiJuneja3 @RebelWheelsNYC,
The co-partners of #CripTheVote, Gregg Beratan, Andrew Pulrang, and Alice Wong, invite you to reflect on the first hundred days of the current Presidential Administration. Joining us as guest hosts are Aditi Juneja, Co-Creator of the Resistance Manual and Co-Host of Self Care Sundays podcast, Serene Vannoy, Disability Rights Team Lead of the Resistance Manual, and Michele Kaplan, activist and creator of the What Is Ableism outreach project.

Please note this chat will be 75 minutes long instead of 1 hour.

How to Participate

Follow @GreggBeratan @AndrewPulrang @DisVisibility @AditiJuneja3 @serenevannoy @resistmanual @RebelWheelsNYC on Twitter
When it’s time, search #CripTheVote on Twitter for the series of live tweets under the ‘Latest’ tab for the full conversation.
If you don’t use Twitter, you can follow along in real time here:
If you might be overwhelmed by the volume of tweets and only want to see the chat’s questions so you can respond to them, check @DisVisibility’s account. Each question will tweeted 5-6 minutes apart.
Check out this explanation of how to participate in a Twitter chat by Ruti Regan:
Check out this captioned ASL explanation of how to participate in a chat by @behearddc
Introductory Tweets and Questions for 4/29 Chat

Welcome to the #CripTheVote chat looking back at the first 100 days of the current Presidential Administration.
We are pleased to have guest hosts @AditiJuneja3 @serenevannoy and @RebelWheelsNYC with us today!
Please remember to use the #CripTheVote hashtag when you tweet. FYI: today’s chat will be 75 min long.
If you respond to a question such as Q1, your tweet should follow this format: “A1 [your message] #CripTheVote”
Q1 Check in: How are you feeling right now as we reach the 100-day mark in the current Administration? #CripTheVote
Q2 What have you learned in the last 100 days that changed or surprised you? #CripTheVote
Q3 What are your thoughts about the efforts to repeal and replace the Affordable Care Act?  #CripTheVote
Q4 With the newest addition to the Supreme Court, Justice Neil Gorsuch, how will this impact disability-related cases? #CripTheVote
Q5 On education & students w/ disabilities, what changes if any have you seen from @usedgov and Secretary Betsy Devos?  #CripTheVote
Q6 What concerns do you have w/ @TheJusticeDept in protecting & serving marginalized communities? #policing #CivilRights #CripTheVote
There have been a number of Executive Orders signed by the President in the last 100 days: #CripTheVote
Q7 How have these Executive Orders impacted you & the communities you are a part of? #CripTheVote
Q8 What are some other actions by the current Administration that adversely impacted the disability community & other groups? #CripTheVote
.@resistmanual is an open-source platform w/ info on a number of issues w/ tools on how to resist #CripTheVote
Q9 What are some ways you've taken action or got involved with your community? What's your advice for other disabled ppl? #CripTheVote

Q10 How do you balance being up to date w/ all that’s happening and self care? #CripTheVote
Q11 What do you want to see in the disability community when it comes to organizing, resisting & being in solidarity w/ others? #CripTheVote
This concludes the #CripTheVote chat on the 1st 100 days. Thank you to our guest hosts @serenevannoy @AditiJuneja3 & @RebelWheelsNYC!
Please keep the convo going & join us 5/28 for our #CripTheVote chat on media coverage of disabled people
A Storify of this #CripTheVote chat will be up shortly. Thanks again!