The Health Cost of Fighting For Healthcare

August 10, 2017 | Emily Kovalesky, 2017 AAPD Summer Intern

In July, there was a vote to repeal the Affordable Care Act. As an AAPD Intern placed in the United States Senate I could not have been more in the thick of things when the vote took place. Because of the possible repeal and replace, repeal only, and skinny bill many people faced losing insurance coverage, increased costs, and loss of Medicaid. The energy that week was intense. I was surrounded by protesters, friends, colleagues, and more. I was going in to work early and leaving late. I brought pizzas to ADAPTers camping out. I attended the NCIL rally on the Capitol lawn. I attended the ADA Anniversary press conference that 4 senators spoke at. I watched debates in the senate gallery until 11pm and then stayed up until 2am the night of the actual vote. I did everything I could to try to make a difference in the fight for healthcare. I still am because I know the fight is not over, just on temporary slowdown. Because of this, my body is in a highly sensitive state.

What people don’t tell you is how tiring it is from a disability standpoint. The people fighting for their lives are the people who do not necessarily have the energy to be doing so. For some people in the office it was just another day of chaos, maybe a little more emotional than usual. For the other interns in my senate office it was just an exciting week to be working. For me…it was draining, exhausting, mostly depressing, but mandatory. I could not sit back and take in the moments as an important political debate. I had to be as involved as possible because, not only my care but, many of my closest friends and allies’ care was on the line. Being involved and fighting for what I need meant using up energy that my body didn’t necessarily have. As someone with chronic health conditions, including genetic and autoimmune disorders, my body does not necessarily take well to being pushed. But, when you are fighting for your rights, you have to push. Everyone that week was pushing. People I know who were in the same health state as me, pushed to their limit. This included both physical and mental health limits. Despite limits being crossed, people had no choice but to keep fighting and face the consequences from their body later on. It is quite ironic that some faced requiring more medical care because of the fear of losing their medical care. Rights should not come at the cost of health. Healthcare rights should definitely not come at the cost of health.

 

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Emily Kovalesky is a 2017 AAPD Summer Intern placed with Senator Bob Casey (D-PA).

A Seat at the Table: In My Own Words

August 4, 2017 | Chakir’ Underdown, 2017 AAPD Summer Intern

The cover of "The Girl Who Cried Wolf" by Nancy Jensen and Nathan P. Swink, Ph.D

The cover of “The Girl Who Cried Wolf” by Nancy Jensen and Nathan P. Swink, Ph.D

Nancy Jensen survived the abuse and trauma experienced at the Kaufman group home, emerging as an empowered force and voice for justice. She faced the Kaufmans during trial, and her voice then helped to change Kansas law – increasing accountability and oversight.

Not to be silenced, Nancy knew her story could help save more lives, so she endured difficult and triggering policy hearings in order to protect the disabled community. Our meeting will remain one of the most memorable and poignant moments of my life. I know that Nancy will continue to save more lives, aide disability advocates, and encourage more to stand out against abuse and oppression.

Nancy is the co-author of The Girl Who Cried “Wolf!”: A Memoir. She details her experience at the Kaufman group home and her 18-year struggle to find someone who would believe her story.

You can find your local P&A here. Please know that you are not alone, and that your voice will be heard. Thank you, Nancy.

 

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Chakir’ Underdown is a 2017 AAPD Summer Intern placed with the National Disability Rights Network (NDRN). This post originally appeared on Chakir’s blog, Kinky Summer, on June 14, 2017.

My First Month in DC

July 31, 2017 | Nermina Aly, 2017 AAPD Summer Intern

“D.C. is going to be an amazing experience for you Nermina.” This is what friends and family would tell me when I would share the news with them that I was accepted into the AAPD internship program. I never quite understood why they would say this. Don’t get me wrong, I was thrilled to start this chapter of my life in a new city, but maybe it hadn’t hit me yet that I would have the time of my life and learn a great deal about the disability community. Well, now I know what they meant.

It has been a month since coming to Washington D.C. and honestly I never felt more free. I may have to do with the fact that I am in the Capitol of the free world. It may also have to do with the fact that I have been immersing myself in the large disability community here and learning that the ADA is only the beginning—this community has come far, yet we are no where near the light at the end of the tunnel.

In this time in our nation’s history, it is to no ones surprise that there is a great divide in our country’s beliefs and values. A topic that is very near and dear to my heart since my exposure to the disability community and interning in a democratic office is the AHCA. D.C. has been an invaluable experience mostly due to the fact that I am getting to interning for one of my heroes and a very loved figure in the disability community, Senator Tammy Duckworth.

Working in in the press pit, I am witnessing the Senator speaking out against the bill and chance she gets—a true inspiration for all people with disabilities. Moreover, as a press intern, working in a political environment has opened up my interest in politics and policy making in ways I could not imagine. Simply just living and working in the nation’s capitol means that you are in the heart and center of all the politics and legislation that serve as the foundation of this great nation-whether good or bad.

Also, working in a Senator’s office daily, I am reminded of the consequences that Trump Care would cause to 50 Million Americans with disabilities who rely on Medicare and preventive care measures to live their lives as healthy as they can be. As this whole debacle is put on pause for a little while, I can feel the tension on the hill easing up a little bit. Personally I think to myself, what can I do—I am but a measly intern after all—the bottom of the political food chain. What must be done? Although I am an intern, I feel as if I am playing my part. I have attended two rallies, answered constituent phone calls, and am constantly speaking out against the injustices facing those who are disabled while empowering my friends and family to do the same. Spread the word through social media; I believe in the power of a group of people fighting against a common cause. The ADAPT demonstration is just one example of how the efforts that the disability community is engaging in to help ensure that such a detrimental bill is never passed. I will make the most of my time here in D.C. learning what I can, having a little fun from time to time, and being an advocate for this disability community. People were right all along, D.C. had been an “amazing experience” but more than that, it has greatly intensified a dim political flame in me that I have been carrying for a while now.

Now that I have a scorching flame running throughout my veins, I will stand up and fight. The question is, will you?

 

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Nermina Aly is a 2017 AAPD Summer Intern placed with Senator Tammy Duckworth (D-IL).

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