Wednesday, July 12, 2017

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.
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!

7/16 Twitter Chat: Death Penalty and Disabled People

Graphic with an aqua blue background and text in black that reads: "#CripTheVote Twitter Chat, Death Penalty & Disabled People, Sunday, July 16, 7 pm ET, Guest host: @talilalewis,"

We are thrilled to have TL Lewis as our guest host for another #CripTheVote chat this summer. This discussion on July 16 will focus on the death penalty and disabled people. Please join us! Information on how to participate and the chat’s questions below.
About TL Lewis

Recognized as a White House Champion of Change and one of Pacific Standard Magazine's Top 30 Thinkers Under 30, Talila engineers & leads innovative and intersectional social justice campaigns that illuminate and address grave injustices within our legal system that have gone unaddressed for decades. Talila's advocacy primarily focuses on creating equal access to the legal system for people with disabilities & individuals who are Deaf, DeafBlind, DeafDisabled & Hard of Hearing. As one of the only people in the world working on deaf wrongful conviction cases, Talila regularly presents at universities; testifies before legislative & regulatory bodies; and trains members of congress, attorneys, and law enforcement about this and other disability-related topics. As the creator of the only national deaf prisoner database, Talila advocates with & for hundreds of deaf defendants and incarcerated & returned individuals.

Talila serves as the volunteer director for Helping Educate to Advance the Rights of Deaf communities (HEARD), an all-volunteer nonprofit organization that works to correct & prevent deaf wrongful convictions; end abuse of incarcerated people with disabilities; decrease recidivism for deaf and returning individuals; ​and increase representation of disabled people in professions that can combat mass incarceration.

Talila, who just completed a third and final year as a visiting professor at Rochester Institute of Technology, is a recent graduate of American University Washington College of Law and has received awards from numerous universities, the American Bar Association, the American Association for People with Disabilities, Congresswoman Eleanor Holmes Norton, the Nation Institute, National Black Deaf Advocates and EBONY magazine, among others.

How to Participate

Follow @GreggBeratan @AndrewPulrang @DisVisibility @talilalewis 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 Twitter chat by @behearddc. #CripTheVote

Introductory Tweets and Questions for 7/16 Chat

Welcome to the #CripTheVote chat looking at the death penalty and disabled people.
We are pleased to have guest host @talilalewis with us today! 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” 
Please note throughout the chat ‘ID’ stands for intellectual disability & SMI ‘Serious Mental Illness’ #CripTheVote
Q1. #DisabilityJustice advocates often discuss nexus b/t racism, ableism, classism & the legal system. How are these connected? #CripTheVote
Q2. Explain how lack of disability competency/sensitivity lead to #WrongfulConviction+harsher sentences for #PwD? #DeafInPrison #CripTheVote
The Supreme Court ruled in Atkins v. Virginia that execution of people with intellectual disability violates the 8th Amendment. #CripTheVote
Under Atkins, states are tasked with figuring out how to define which defendants are intellectually disabled. #CripTheVote
Despite Atkins, people w/ intellectual disability are still on on death row & many have been executed as recently as this year. #CripTheVote
In March this year SCOTUS ruled that Texas' method of determining ID was unconstitutional. #CripTheVote
Q3. @ABAdueprocess is pushing for a #SMIexemption to the #deathpenalty similar to ID exemption carved out by Atkins. Thoughts? #CripTheVote
Q4. Should states use IQ+the “medical community’s diagnostic framework” to determine disability status? Thoughts? #SMIexemption #CripTheVote  
Q5. Some #DisabilityJustice advocates don’t support outright disability-based exemptions.Are exemptions inherently problematic? #CripTheVote
In April, the state of Arkansas rushed to execute eight people in just 10 days. #ARexecutions #8in10 #CripTheVote
For more info on #8in10+#ARexecutions+#DeathPenalty, follow @abrahambonowitz+@RDunhamDPIC+@DPInfoCtr. #CripTheVote
Q6. Name one/several recent #deathpenalty cases that involved #disabled people. What concerns you about this/these cases? #CripTheVote
Q7. Many people on #deathrow & those who have been released from death row discuss acquiring #MentalIllness. What causes this? #CripTheVote
Q8. Why is it critical for prison & death penalty abolitionists to include  disability in their race, class, gender critiques? #CripTheVote
Q9. What have you learned from this chat & how will it affect/change your abolition/advocacy, conversations moving forward? #CripTheVote
The hour has flown by! Sadly, this concludes the #CripTheVote chat on the death penalty. Thank you for joining us.
Special thanks to our guest host @talilalewis! A Storify of this #CripTheVote chat will be up shortly. #CripTheVote
Please keep the convo going! You can find updates & more info here: #CripTheVote

Thursday, June 29, 2017

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.

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!