#CripTheVote graphic by artist Micah Bazant

Many thanks to artist Micah Bazant for creating this image just for #CripTheVote! Feel free to share and be sure to check out and support Micah's artwork: https://www.micahbazant.com/

Image description: Illustration with large red text: "Crip the Vote" above two disabled queer people of color surrounded by flowers and radiating love. One person is Black, uses a wheelchair and a ventilator, and has a drink with a plastic straw on her tray. A butterfly is resting on her wrist. The other person is Chinese American, fat and uses a cane. Artist credit: Micah Bazant

Q&A with Jack Rosen, Voter Engagement Specialist at the National Disability Rights Network

Tell us a little about yourself! 

I have ADHD and other learning disabilities which made studying certain subjects a struggle. History, writing and government were always what interested me and what I seemed to excel at in school and what really captured my interest. I also always wanted to fight to ensure other students with learning disabilities would have the same support and opportunities I had growing up, so becoming politically active was kind of a natural fit. 

What is your role at National Disability Rights Network and what are some things you are currently working on as Election Day approaches? 

I am the National Disability Rights Network’s Voter Engagement Specialist. I create content to get people excited to vote, help expand our get out the vote efforts, and provide training and technical assistance to the P&A network. As Election Day approaches we are releasing several more videos for our series sharing that highlights the issues that matter to activists and everyday voters with disabilities.

For disabled people who encounter barriers accessing voter information or casting a ballot independently and privately, what can they do? What are some resources or places they can contact? 

You can contact your local member of the Protection and Advocacy Network for any questions you have about casting your ballot independently or what accessible options you have to do so! You can find your at https://www.ndrn.org/about/ndrn-member-agencies/. 

You can also call your local county election’s office, to ask in advance what accessible voting options are available. If for any reason they refuse to provide accessible options, you should contact your state’s P&A as well as the Election Protection Hotline at 866-Our-Vote (you can also text that number or use the chat function on their website 866ourvote.org) 

Voting remains difficult for many disabled people across the country and during this pandemic in particular. What are some concerns you have that will impact voter turnout? 

This election is a bit odd, in that turnout is likely to surge for certain segments of the disability, but not others. The proliferation of vote by mail, and especially accessible absentee ballots, combined with the spread of early voting, have the potential to make voting easier for a large number of people with disabilities. However this is not going to be the case across the board. Unfortunately not every jurisdiction has accessible absentee ballots available, and that is going to negatively impact turnout in those areas for voters who are blind or have certain disabilities that make it difficult for them to fill out a paper ballot or use a non-accessible machine. 

One of the biggest concerns when it comes to turnout this year are folks in congregate settings, such as group or nursing homes. A lot of those individuals have had very little outside contact since the start of the pandemic, and in some areas we have seen resistance to bringing in people to assist with the voting process in those settings due to fear of spreading COVID. So there are folks in these settings who aren’t getting the support they need to cast their vote, and that is a big problem. 

Finally we are concerned about the impact long lines could have. For voters with limited mobility, chronic pain, or other disabilities the length of these lines is a real concern. No one should have to wait hours to vote, and long lines could have a disproportionate impact on those voters. 

Why are you passionate about voter engagement? What plans do you have on voter outreach and education in 2021 and beyond since people should care every year, not just during midterm and Presidential elections? 

I’m passionate about voter engagement, because I think a lot of people don’t realize how much power we have as voters. I’m not here to say voting is a cure all for every problem facing society, but rather that you genuinely can improve things at a very real level by voting. The individuals we elect can have a tremendous impact on our everyday lives.

Which brings me to the second part of this question. Next year we want to do a series educating voters on the significant role that local elected officials have on setting policies that impact the lives of people with disabilities. Everything from how a local planning commission can impact how accessible the sidewalks are, to how an elected district attorney can impact if people with mental health disabilities get jail or treatment, to how the people you elect to your school board can have an impact when it comes to providing adequate resources for students with disabilities. We want to highlight the connection between deciding who your local elected officials are and the everyday issues that can affect both quality and quantity of life for people with disabilities. 

Is there anything else you’d like to share with #CripTheVote? 

Visit https://voterswithdisabilities.org We have a great collection of videos featuring a range of voters talking about all the issues that matter to them. And feel free to use the link to submit your story! We are always trying to get the stories of voters with disabilities out there to create the representation that is often lacking in mainstream get out the vote campaigns. We want to share your story, what issues matter to you, and what motivates you to be politically active. 

ABOUT JACK ROSEN

Jack Rosen smiling faintly at the camera. He is a white man in his 20s, has brown hair and a short brown beard. He is wearing a blue blazer with a pink shirt and stands in front of a blurred background of grass, trees and an office building.

Diagnosed with ADHD and other learning disabilities as a child, Jack’s parents had to fight his school district to ensure they honored his IEP. In high school he spent two years at Winston Prep in New York City, a school focused on enabling those with learning disabilities to succeed. While there he witnessed his friends and classmates, who were attending with government funding, have to go through annual tests to prove they still needed the services that Winston provided and could not be sent back to the schools that had failed them in the past. While Jack was fortunate enough not need to do these tests, watching the stress it caused his classmates had a profound impact on him as he was exposed to the inequity of the education system. After two years in New York City, he returned to upstate New York, where he graduated from Doane Stuart in 2012. 

At Skidmore College, he earned a B.A. in Government. During his junior year, he was inadvertently  elected to student government, and ended up serving for two years representing student club presidents. There he fought for reforms within the student government system, to give the student run clubs greater representation. In college he interned for a local newspaper, an affordable housing lender he would later work at, and Sen. Chuck Schumer. In 2016, during his senior year of college, Jack joined the state senate campaign for a local union organizer. As Communications and Regional Field Director, Jack helped implement voter contact strategies. 

After the campaign Jack spent a year working in the affordable housing  industry. In 2018 he moved to Washington DC to earn an M.A in American Government from Georgetown University. After completing his degree, Jack worked as a freelance strategic communications consultant before joining the National Disability Rights Network in 2020. At NDRN, Jack develops non-partisan messaging to engage and increase participation of voters with disabilities in the electoral process. He collaborates with civil and disability rights organizations to enhance voter engagement nationally. 

In his spare time he enjoys skiing, playing video games and rooting for his beloved and beleaguered New York Jets.

Twitter: @JackRosen94 and @NDRNadvocates

Young Adult with Disabilities to Healthcare Justice Activist: A Narrative and a Plea to Vote

Photo by Nate Gowdy

This essay is part of a partnership between #CripTheVote and Rooted In Rights. The opinions expressed are solely those of the author.

===============

My Early Interest In Politics
By Leslie A. Zukor

My first memories of being interested in politics were in eighth grade, when we learned about political theory. I remember being fascinated about how democracy could morph into authoritarianism. By the time I had completed one semester of high school, I had perused political philosophy. Plato was a personal favorite, and I found myself gravitating toward conservative ideas - especially on matters like abortion and other cultural issues. During my sophomore, junior, and senior years, I volunteered on political campaigns, from the state legislature to the US Congress, and even ventured to Washington, DC for a couple of educational programs.

However, it wasn’t until I identified as a disabled person that my worldview began to crystallize. For most of high school, political issues were mere abstractions. I grew up in a wealthy suburb of Seattle, so my food, shelter, and college education were not in question. Before I was an adult with diagnosed disabilities, I had little awareness of healthcare, the economy, and our social safety net. In short, living in wealthy suburbia culminated in privilege, as well as obliviousness to the political and economic realities so many people face.

The Onset of Disability and My Political Consciousness

While I was taking summer courses in between my freshman and sophomore years of college, everything changed. Attending Wellesley, I had hoped to major in Classical Studies and Philosophy, and to do graduate work in either politics or history. From my nineteen-year-old vantage point, my life’s story would inevitably culminate in a PhD and a job somewhere in academia. However, driven by stress, biological factors, and ill-advised medication given by my neurologist, I suffered a breakdown, which culminated in mood dysregulation, panic disorder, and PTSD. During my three-and-a-half-week hospitalization, I started seeing the first signs of what would become nearly a decade and a half of disability.

Only a few weeks after my hospitalization, my family received its first bills for my medical care back in Boston. I quickly learned that I was lucky that my Dad had taken out a policy for me through Wellesley that had covered mental health, because our Washington State-based Regence insurance didn’t afford the same protections. As a result, my family and I averted a $30,000+ hospital bill. No longer was the issue of healthcare merely an abstraction; no longer were prescription drug costs something that only my elders had to face. Now, as a person whose disabilities required medication for the rest of her life, issues I once took for granted were now a matter of life vs. death, poverty vs. sustenance. As my family paid more and more for my medical bills, totalling well over $400,000 in fourteen years, I came to the realization that affordable, accessible healthcare was a preeminent disability right.

Involving Myself in Electoral and Single-Issue Politics

My healthcare justice activism was ultimately motivated by the cementing of my identity as a disabled American. In 2014, I was officially approved for Social Security Disability. Seeing how much Medicare and low income subsidies I personally qualified for under Part D benefited my life, I actively advocated for the policy for all Americans. Thus, it should come as no surprise that I spent the better part of a year volunteering for Bernie Sanders’s Presidential campaign, being a delegate to the Washington State Democratic Convention, and serving as First Vice Chair of the Washington State Democrats Disabilities Issues Caucus. In all of my activism, some of which garnered press coverage, I emphasized the importance of single-payer healthcare for people with disabling, chronic health conditions, like myself.

Although the primaries ended in a loss for my candidate, my personal journey in politics was just beginning. Inspired by the state’s caucus system and my own involvement in the electoral process, I delved full-speed ahead into the healthcare justice movement. In October of 2016, I joined Health Care For All - WA, where I now sit on the Political Action Committee. I also volunteered for a year as Steering Committee President, Events Committee Chair, and served a stint on the Board of Directors for Whole Washington, a well-intentioned, but poorly executed Washington State initiative campaign, to ensure healthcare for every man, woman, and child - regardless of ability or disability.

Setting my Sights on Single Payer

The pinnacle of my political involvement came in January of 2018, when I testified before our state legislature’s health committee on Senate Bill 5701, which would have established a single-payer system in Washington State. Although I had only a minute to speak, I emphasized the bill’s positive impact on disabled people struggling to find insurance, and also recounted my personal story - one that included a private insurer’s chiding my family and me on a recorded line to go to the hospital, in lieu of covering my psychiatric medications on an outpatient basis.

Equally powerful, I elucidated the harrowing reality that the only reason I was alive was because my parents could afford to pay for the best doctors and most cutting-edge treatments when I was a young adult, without which I may well have succumbed to suicide. I was later told that the friendly overflow crowd gave me thunderous applause in the hall. This chance to offer my voice and experience as a disabled person in service of actual policy was transformative for me, and inspires my efforts to continue advocating for the crucial disability right of ensuring quality, affordable healthcare for all.

Voting and Values

With our next national election coming up quickly, I have had plenty of time to reflect on my political journey - from being raised by a liberal mom and a center-left dad, to becoming a young conservative, to ultimately arriving at progressivism in my late twenties. I realize that with different formative experiences, my beliefs and values would have been far different. Thus, even though advocating for a healthcare system abolishing private insurance companies culminates in my voting for left-leaning politicians, another person with a disability might see the same issue from a polar opposite perspective. As someone who values freedom of conscience, I would urge everyone to be true to his or her value system when voting - regardless of how the media frames the issues, regardless of how one’s family has voted in the past, and regardless of how one has cast ballots in earlier years. In short, I haven’t always voted for the same party or the same issues, and I see nothing wrong with changes in worldview as one evolves as a person and member of society.

As it stands, on November 6, 33 Senate seats, all 435 Congressional races, and a myriad of other local and national issues will be decided via the American electoral process. While I will be cheering for healthcare justice advocate Alexandria Ocasio-Cortez and voting for Berniecrat Sarah Smith in Washington’s ninth Congressional District, I urge you to take the advice of the Father of the Americans with Disabilities Act, Justin Dart, as you do your own research on which candidates and issues reflect and further your values. “Vote,” he said, “as if your life depends on it. Because it does.”

Each time we cast a ballot, we make a statement about how we believe our government and a just society should function, and about which candidates are the best to carry out these ideological commitments. It is all of our jobs as people with disabilities to ensure that government both reflects and acts upon our concerns, however diverse they may be. This election season, exercise your right to vote, urge your friends and family members to do the same, and may the candidates and initiatives best for disability issues prevail.

Leslie A. Zukor is a disability rights activist, who serves as First Vice Chair of the Washington State Democrats Disabilities Issues Caucus, and is the Secretary of the Washington State Political Items Collectors. She also is a member of Health Care For All - WA, and serves on its Political Action Committee. Holding a bachelor of arts in Anthropology from Reed College, Leslie transferred from Wellesley College and went to school in Oregon part-time for five years, before she earned her degree. Her interests include political history, photography, and collecting liberal, progressive, and Leftist political memorabilia. You may follow her on her personal Facebook page @facebook.com/lazukor.

Returning to the Women’s March in 2018 Committed to Political Change and Accessible Marches

By Charis Hill

In 2017, I joined the Women’s March on Sacramento in an old, large, clunky, medical-grade, standard-issue wheelchair I borrowed from my church. At the time my options were to use this wheelchair or stay home. Thankfully, since then I’ve acquired my very own custom chair!

My experience in 2017 was better than I expected considering it was the third time I had ever used a wheelchair. I was grateful to participate without my entire focus on the pain and fatigue that comes with walking and standing too long. I carried a two-sided sign that read, “Cure Ankylosing Spondylitis” and “Healthcare keeps this pussy alive.”

Using the chair, I had expected to constantly fight my way through crowds and keep people from sidestepping in front of me or falling on my lap. I was pleasantly surprised. People were polite and eager to make sure I could freely move. I didn’t feel like an object they tried to avoid – people saw me first, and the chair second. This was refreshing. And, even though I could not make it through the dense crowd to the ADA area up front, an organizer moving against the crowd wove her way sideways to reach me to tell me about its existence, if I could make it there.

Overall, my experience was pleasant because of the humanity of the attendees at the march, rather than the organization and design of the march itself. I was simply happy to be able to participate at all.

I was absolutely on board to attend any future Women’s Marches. Humanity had been restored.

Then, after a year of using my own wheelchair I was able to look back at the experience and see the accessibility gaps I wasn’t even aware of then. For one, I wasn’t aware there was an ADA area until the middle of the march. Second, there were no signs directing people such areas. Third, marketing leading up to the event hadn’t included accessibility information. 

And I noticed a similar pattern leading up to the 2018 march. The website didn’t have any accessibility information.

I spoke up about this at a listening session with the 2018 organizers a couple weeks before the March. I added that people with disabilities are one of the most marginalized and vulnerable groups in America and we often feel unheard and invisible. Inclusivity is paramount to our ability to thrive. I said that I would be happy to share more at another time.

In response I was asked to do a walk-through of the rally setup and offer suggestions.

And I was asked to be a speaker at the rally.

Fearing I was the only disabled voice being heard, I couldn’t refuse. If my speaking up could shed some light on even the smallest missed opportunities to make the march and rally more accessible, then I would make a difference. All the while I knew this approach needed to be more robust the following year; after all, I am magnificently ill-equipped to represent every accessibility need.

All that said, my experience as a speaker for the rally was great! There are things I wished I could have done, like participate in the march itself, but I had to choose speaking over marching this year. My health would not have allowed for both.

Here is a link to a video of my speech as well as the transcript: Click here for the video.

Lastly, I do want to speak to accessibility for marches in general.

I have heard a lot about how the Women’s Marches have a lot of work to do to be more actively welcoming and inclusive of people with disabilities. I think this claim can be made of almost any march for any cause, not just the Women’s March movement. I believe the Women’s Marches are taking the heat directly as a result of being the new kid on the block. I see this as an opportunity to use the Women’s Marches as a pilot program to remove the kinks and set an accessibility standard and protocol for all future marches to follow.

We have miles to go for full accessibility and inclusion, but we are in this moment now and must do what is in our power to hurry up change. And I am rolling with it.

---------------

About

Charis Hill is a chronic disease advocate, writer, and model who lives with Ankylosing Spondylitis (AS), Major Depressive Disorder, Anxiety and Post-Traumatic Stress Disorder. She graduated in 2009 from Meredith College, Magna Cum Laude, with a BA in Sociology and minors in Psychology and Women’s Studies. She is also a self-titled Episcopal Geek and gives really good hugs. When able, she enjoys sewing, cooking (she’s vegan), gardening, soccer, running, and her two cats Dora and Juno.

Charis’ story has been featured in dozens of publications, including Arthritis Today Magazine, Mother Jones, and CNBC. She has spoken on healthcare panels, with pharmaceutical organizations, and in legislative hearings. In 2014, Charis was awarded the Progress in Policy Award by the Arthritis Foundation, Pacific Region for her efforts in Statewide and National legislative advocacy efforts (watch her in action).  She leads the Sacramento area Spondylitis Association of America Support Group, is on the CreakyJoints Patient Council, and is a speaker with the Stop Stigma Sacramento Speaker’s Bureau. Charis is additionally a member of the Standing Committee of the Episcopal Diocese of Northern California and will be a Deputy to the 2018 General Convention of the Episcopal Church in Austin, Texas.

Blog: https://beingcharis.com/

Twitter: @BeingCharisBlog

Guest blog post: Discovering political activism through my DeafBlind Community

Image description: Black and white photo showing a young white woman with long brown hair. She is wearing eyeglasses, dangly earrings, and a scarf around her neck. She is standing behind a tile wall.

Discovering political activism through my DeafBlind community

By Kit Englard

People with disabilities are not often encouraged to participate in local politics. Not only are we not encouraged, but we are sometimes actively discouraged. There is a plethora of programs to help diverse groups of people participate in local and federal levels of politics, but very few of them are open to providing the types of accommodations that someone who is DeafBlind might need. I applied to DeafBlind Citizens in Action’s Young Adult program two days before the deadline. I had gotten an email about it from my local National Federation for the Blind chapter, an organization I’m only peripherally involved with.

I’ve been a staunch supporter of various social justice issues throughout my life. I was a member of the Amnesty International chapter at my high school and the environmental club. In college, I was a member of the Gay Straight Alliance and the Social Work in Real Life group because I enjoyed volunteering. However, I never had the opportunity to really dive into the political sphere. Most of the groups I was involved in partook in marches and protests—to things I’ve never been comfortable with as a blind (or DeafBlind) person. During the 2016 presidential campaign, I had considered volunteering for Hillary Clinton locally, but shied away after being laughed at, and hearing a variety of comments about a DeafBlind person not having a lot to contribute.

When I received my acceptance letter from DBCA, I really did not know what to expect from the program. My overall goal was to go in and learn about the various levels of government—something I had somehow missed during social studies in high school. I was also aware that we were going to have the opportunity to speak with local legislators. What I got out of the experience was far more valuable.

Though I have been legally blind for over a decade, my hearing loss did not begin until last year. At which point I dove into learning ASL and furthering my skills in braille. I also needed to entirely relearn my mobility skills, adjusting for my new hearing. DBCA was going to be full of firsts. First time working with interpreters for college level lectures, for using Pro-Tactile communication (a method used to make audio and visual information tactile), for using braille more heavily (audio got me through college), for communicating in person with other DeafBlind people, and the first time flying since the onset of my hearing loss.

It was also the perfect program for me. It gave me everything I wanted to learn. I was instructed on the difference between regulators and legislatures. I was able to meet members of the Department of Justice, Department of Education, Department of Transportation, and the Federal Communication Commission.  Even better? My voice and experience mattered.

As a person with a disability slogging through endless rejections from potential employers, weird comments from editors, and general disregard for my opinion, this experience was a breath of fresh air. Someone at the FCC cared that there were rampant accessibility problems. The Department of Education representative was responsible for the special education department—and she cared about our opinions on education. She cared about the fact that schools across the country are using tech that is inaccessible to students with disabilities. That this inaccessibility was creating a barrier to access STEM education.

Further, I could see exactly how my own expertise in science and technology was not only important, but rare. This specialty allowed me to walk into the offices of my local legislators and tell them what my community needed, and I could bring up unique opinions using my background. I was also emboldened to take lead and speak on a tech panel that was a collaboration between several blindness agencies, DBCA, and Verizon.

I regularly suffer from low self-esteem, and as cliched as it is, I am my own worst critic. It’s hard for me to look at my accomplishments and see progress. Mostly all I can see is a failure to find gainful employment, which has in turn generated even lower self-esteem. To participate in politics, you need to first believe that your voice matters. That your experience is not only relevant, but critical to getting important rules and regulations passed. It also prevents someone from recognizing that they deserve legislation that can improve his or her life.

DBCA rekindled my love of getting involved in my own local community because it created a path that was fully accessible to me as a DeafBlind young woman. I know now what full accessibility looks like, and I can turn around and participate in my local level politics. This past week I even picked up the phone to call my state’s Secretary of State to voice my opinion about a local issue.  Something I’ve had a great deal of anxiety doing, as I have difficulty hearing on the phone.

Entering the political sphere can be daunting for anyone. But how much more so for young adults who are DeafBlind and have unique communication needs. It’s difficult to get involved when we get stuck advocating for our communication needs on top of learning how to get involved. DBCA took a level of complexity out of the equation, leaving more room for learning. I now have the confidence to not only advocate for my communication needs, but also to get involved on a local level because I’m not a complete beginner anymore. I look forward to seeing what I can contribute to our government, and in future campaigns. It is my hope that more young people with disabilities will get involved. There is so much need for advocacy, and legislatures want to hear your opinions. Most people in government are there to serve the country—make their jobs a little easier and voice your opinion.

About

Kit Englard is a freelance writer who specializes in assistive technology. She is the founder of Femme de Chem, which works to expand opportunities for people with disabilities in STEM fields. She uploads videos and articles weekly. Follow her on twitter (@mathnskating) and on Facebook (Femme de Chem). You can support her and her work at patreon, or leave a tip!

Media coverage of disabled people protesting GOP healthcare bill

Disabled people have been protesting throughout the year against the AHCA, the proposed GOP healthcare bill in the House, and now the BCRA from the Senate.

On June 22, 2017, activists from ADAPT occupied the hallway and staged a "die-in" in front of Sen. Mitch McConnell's office. They were hauled off by police at the Capitol which resulted in news and a flurry of social media. One of the protesters was our very own co-partner Gregg Beratan.


Here are three excellent articles by disabled writers reflecting on the recent media coverage and the 'sudden' discovery of disabled people involved in activism.

Media has been Wrong about Disability and it May Cost 24 Mil People their Healthcare
Imani Barbarin, Crutches and Spice, June 25, 2017

How Media Coverage of Health-Care Protests by People With Disabilities Missed the Point
Robyn Powell, Rewire News, June 27, 2017

How Can News Stories Discuss The Lives Of People With Disabilities Without Talking To Us?
Aditi Juneja, Bustle, June 28, 2017


To read more, check out the Storify from our recent #CripTheVote chat on political coverage and disabled people with guest hosts Vilissa K. Thompson, s.e. smith, and Ana Marie Cox. People shared their thoughts about ableism in the media and recommendations on improving the media landscape.

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

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.

ABOUT

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 feministsonar.com