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