Monday, September 18, 2017

#CripTheVote Chat on Education

#CripTheVote Twitter Chat - Education - September 19, 2017 7 PM ET - Guest hosts: @DrSubini @EndInvisibility @SaveRyanWhiteD

Education has long been pushed as a silver bullet for Social Justice issues, yet many in our community have found and continue to find that the education system is often a barrier to disabled equality and worse actively contributes to our inequality. It is too big a topic for this chat to be comprehensive, but the chat will examine some of the very complex issues our community is engaged with in education.

How to Participate

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: http://twubs.com/CripTheVote

If you are overwhelmed by the volume of tweets and only want to see the chat’s questions so you can respond to them, check the @DisVisibility account. Each question will tweeted there 5-6 minutes apart.

Check out this explanation of how to participate in a Twitter chat by Ruti Regan: https://storify.com/RutiRegan/examplechat

Check out this captioned ASL explanation of how to participate in a chat by @behearddc - https://www.facebook.com/HEARDDC/videos/1181213075257528/

INTRODUCTORY TWEETS AND QUESTIONS
Welcome to the #CripTheVote chat on education. Please remember to use the hashtag when you tweet.
We are pleased to have guest hosts @DrSubini @EndInvisibility @SaveRyanWhiteD with us today!
If you respond to a question such as Q1, your tweet should follow this format: “A1 [your message] #CripTheVote”
Q1. What do you see as the top issues facing disabled people at all levels of the Education system? #CripTheVote

Q2. How did Disability & the experience of Ableism shape your educational experience? #CripTheVote

Q3. IDEA has been relatively unchanged since its Introduction in 1975 is it time for an overhaul? What would you change? #CripTheVote

Q4. How do ableism and racism work together in our school systems?

There is overwhelming evidence that Disabled students of color are the primary targets of the school to prison pipeline #CripTheVote

Disabled students of color are also far more likely to be disciplined & removed from school for same offenses as their peers. #CripTheVote

Q5. The administration is fighting for more charter schools. How will this affect disabled students? What can we do? #CripTheVote

Deaf students often come into school w. language development far behind non-Deaf peers a gap which is compounded once in school #CripTheVote

Q6. What are the factors that lead to Deaf students not being kindergarten ready and how can this be addressed? #CripTheVote

Q7. Has a focus on inclusive settings kept us from developing more inclusive teaching strategies? If so what do we need to do? #CripTheVote

Q8 What should we think about homeschooling/opting out of education systems that still fail to treat disabled students properly?#CripTheVote

Q9. How do we insist on higher standards for disabled students without making education too harsh, regimented, test-driven? #CripTheVote

Q10. Despite activists to showing the harm and danger of ABA it is still a 1st choice intervention. Why? What can be done? #CripTheVote

Thank you for joining the #CripTheVote chat on education. Please continue the convo!

Many thanks to our guest hosts @DrSubini @EndInvisibility @SaveRyanWhiteD. #CripTheVote

A Storify from today’s #CripTheVote chat will be up shortly.

Wednesday, September 6, 2017

#CripTheVote Invitation to Disabled Candidates

#CripTheVote logo with ballot box with four disability symbols on the front and #CripTheVote in multicolored letters
The organizers of #CripTheVote invite candidates for office who are disabled to participate in live, scheduled Twitter chats this year and next. These will typically be about an hour long, and structured by questions, about half posed by the organizers, and the rest from #CripTheVote participants. Our aim is to give disabled candidates a disability-centered forum in which to discuss their positions, campaign plans, and how they view their own disabilities in relation to their political goals.

Like all #CripTheVote activities, these chats and this invitation are non-partisan. We do not endorse or oppose any candidate or any party. Candidates can expect to be questioned, sometimes vigorously, on how their policies might affect people with disabilities.

#CripTheVote is an online movement about politics, policy and civic participation focused on disabled people and disability issues. It was started in January, 2016, by Alice Wong, Gregg Beratan, and Andrew Pulrang, to focus attention to disability issues and disabled voters during the 2016 elections. Here is a link to our April 2017 chat on Disabled People in Public Service.
Candidates with disabilities, and / or staff can respond to this invitation by emailing to: cripthevote@gmail.com.

#CripTheVote Organizers

Alice Wong
@SFdirewolf

Gregg Beratan
@GreggBeratan

Andrew Pulrang
@AndrewPulrang

Monday, August 7, 2017

August 13, 2017 #CripTheVote Chat: Explaining Disability Issues to Family & Friends

#CripTheVote Chat: Explaining Disability Issues to Family & Friends August 13, 4 pm Pacific / 7 pm Eastern www.cripthevote.blogspot.com

We all have people in our lives … family, friends, coworkers … who we love and who love us, but who don’t really share our understanding of disability culture and activism. Most of us also know people who are flawed allies. They sincerely believe they are "on our side," but often miss the mark in important ways. We may also encounter indifference from family and friends. When we try to share our fears about disability policy, or our excitement about disability activism, they give us blank looks and hurry to change the subject.

This chat will explore ways disabled people can try to explain to people close to them what disability activism is all about. We hope to collect some simple tips and coping mechanisms we can all use to widen support for the disability community’s key principles and priorities.

How to Participate
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: http://twubs.com/CripTheVote
If you are overwhelmed by the volume of tweets and only want to see the chat’s questions so you can respond to them, check the @DisVisibility account. Each question will tweeted there 5-6 minutes apart.
Check out this explanation of how to participate in a Twitter chat by Ruti Regan: https://storify.com/RutiRegan/examplechat
Check out this captioned ASL explanation of how to participate in a chat by @behearddc - https://www.facebook.com/HEARDDC/videos/1181213075257528/
Questions

Q1: What is it like discussing disability experiences and issues with your non-disabled family & friends? #CripTheVote‬

Q2: Have you experienced conflict between your family or friends’ religious or political views, and your disability identity? #CripTheVote

Q3: Do your family & friends understand how disability issues - like healthcare or the ADA - affect you personally? #CripTheVote

Q4: ‪Do you feel free to share fears about disability policy developments, or excitement about activism, with family & friends? #CripTheVote‬

Q5: How do non disabled people close to you regard your disability identity and activism? #CripTheVote

Q6: When family or friends say things about disability that anger you, what do you usually do or say? #CripTheVote

Q7: What success have you had getting family or friends to join in with disability activism? #CripTheVote

Q8: What communication strategies work/don't work for explaining disability issues to people close to you? #CripTheVote

Q9: What are some of the core facts & ideas about disability you wish family and friends understood better? #CripTheVote

Tuesday, July 25, 2017

Action Alert on Health Care

The following message was sent by the Consortium for Citizens with Disabilities Grassroots Team:

Medicaid advocates,

There’s a lot going on right now, but we’re going to try and explain some of it--as you may have heard, the Senate held some votes today.

The Senate began by voting to start debate on healthcare bills this afternoon. That vote passed, with both Senators Collins of Maine and Murkowski of Alaska voting no. The Senate also voted on a slightly revised version of BCRA, with the horrible per capita caps on Medicaid. Due to procedural rules, the Senate had get 60 votes and did not. (Both Senators Portman and Capito voted for BCRA--they need to hear about how harmful this vote would be for their constituents with disabilities.) We anticipate that they will vote tomorrow on full repeal; this vote will not be the final vote. Please know this voting process will continue over the next several days with many different votes.

The process they're using moves fast—but currently, we think the Senate will be taking a FINAL vote THURSDAY OR FRIDAY. We do not know what that will be. It doesn’t matter. We’ll let you know when we know--until then you will hear a lot about other votes, but you should focus on advocating as hard as you can until this final vote.

The various bills have morphed and mutated multiple times over the course of the last few weeks, but one thing has stayed the same: any of these bills will absolutely destroy our healthcare system, and with it, the lives of millions of Americans with disabilities. Here’s a quick recap of what all of these bills do:

No matter which version they vote on, millions of people will lose their health insurance.
No matter which version they vote on, Medicaid will be cut by billions of dollars.
No matter which version they vote on, millions of people with disabilities will have a harder time getting the health care and services we need.

If you’re feeling exhausted, scared, or overwhelmed, you’re not alone. This fight has been hard on us because of how important it is - and that’s exactly why we can’t give up now. These last days are critical. Here’s how we can win:

Keep calling:
Call your Senators and tell them to vote NO.
Top Targets: Senators Capito (WV), Corker (TN), Heller (NV), Portman (OH), Graham (SC), Moran (KS), McCain (AZ)
All Other Republican Senators
Call and thank Senators Collins and Murkowski and ask them to stay strong.
If you have already called, keep calling.
If you have trouble with phone conversations, evenings are a great chance to call and leave a voicemail while offices are closed.
If you use AAC, you can call in using your AAC device, or get a friend to read your message into the phone. After you call your Senators’ DC office, try their state offices. You can use our script:

My name is [your full name]. I’m a constituent of Senator [Name], and I live in [your town] and my zipcode is [zipcode]. I’m calling to ask the Senator to vote NO on any bill that caps or cuts Medicaid. If any of the bills being discussed as part of the budget process are passed, millions of Americans will lose health insurance. These bills take away protections that people with disabilities depend on, drastically cut Medicaid, and will return us to the bad old days when people with disabilities like [me/ my family member/ my friends] were uninsurable. We can’t go back. Please vote AGAINST repealing any form of caps or cuts to Medicaid. It’s time for Congress to scrap repeal, leave Medicaid alone, and work together to improve the ACA. We’re counting on you to do the right thing.

Thank Senators Murkowski and Collins. Normally, we tell you not to contact senators from other states. But regardless of where you live right now, please thank Senators Collins and Murkowski through email, letters, posting on social media, etc. Just a “Thanks from us and from the entire disability community for your support for people with disabilities. Please stay strong and reject any bill that hurts Medicaid” is more than enough. They will be feeling the pressure from others and we need to to make sure they hear from the disability community to stay strong.

Send emails and faxes. After you call, email your Senators and say the same thing. Then, send them a fax with that same message.

Go to your Senators’ local offices and tell their staff what you think. To find your Senators’ local offices, visit contactingcongress.org. Under the contact information for each Senator, there is a list of their local offices. This is one of the most effective ways to get your point across to an elected official.

You may have heard or will hear people saying that a bill is dead or that a vote went well. But we’ve heard that before - people said the same thing about the House bill and we are now in the Senate. So don’t let down your guard - the Medicaid program remains at risk and harmful caps and cuts could very easily pass. We are the only thing standing in the way of these horrible changes. In the next few days, we have to call, email, show up, and advocate like our lives depend on it - because for many of us, they do.

In solidarity,

~The CCD Grassroots Team

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.
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!

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, http://cripthevote.blogspot.com/"


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: http://twubs.com/CripTheVote
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: https://storify.com/RutiRegan/examplechat
Check out this captioned #ASL explanation of how to participate in a Twitter chat by @behearddc. #CripTheVote https://www.youtube.com/watch?v=0lJ9YRAwOj4

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. http://www.npr.org/2017/03/28/521823516/supreme-court-strikes-down-mental-disability-standards-for-death-row-cases #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 https://deathpenaltyinfo.org/node/6722
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: http://cripthevote.blogspot.com/ #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