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How Medicaid Cuts Would Hurt Me as a Person With a Disability

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I have a strange favor to ask: Stop scrolling and look at my face. Really look at it. Now, as you read the rest of these words, hear my story. Really let yourself hear. At 22 years old, I am a recipient of a Master’s degree from the University of Washington. I am a lover of sports, people, books, dogs, the outdoors when it doesn’t involve bugs, coffee, adventures and foods that aren’t spicy. I am a daughter, a sister, a friend. I am a dreamer. And I am also the #FaceOfMedicaid#IAmAPreexistingCondition.

For at least 20 of my 22 years on this planet, I have been given everyday reminders that I live in a world that wasn’t made for me, a world that quite frankly, doesn’t know what to do with me. These reminders come in many forms, whether it be a building I can’t enter because of the stairs leading up to it, the lady who can’t fathom why I’d be at the fill-in-the-blank-with-any-place-you-can-think-of (park, grocery store, baseball game, etc.) by myself, the teacher who tells me I don’t belong in her classroom, pointing instead to the room where the ”special students” go, and the people who simply say “I’m so sorry” and walk away. But that’s OK, because I have thick skin and an army of people behind me that have helped me knock down every wall. I also have a visceral reaction to the word “can’t” that causes me to fight harder and longer than even I knew possible. Quite simply, I have worked my ass off to get to where I am.

Societal barriers aside, I am almost as frequently reminded of my difference because of personal (the things that make people uncomfortable when I talk about them) issues related to my disability. See this wheelchair? It takes the place of the legs you don’t think twice about when you jump out of bed and sprint out the door when you’re late to work in the morning. I have to fight for it. Every five years, I have to prove I’m worthy (or needy enough) for it. Medicaid helps me do that.

While we’re on the subject of limbs that don’t work properly, I only really have control over my left arm. Anything requiring more than one functional limb, I need help with. That means driving, bathing, dressing… peeing. Yeah, I went there. I need help with all of it. And in large part, Medicaid gives me that help. It took me a long time to accept help with these physical tasks without feeling like a complete burden. I now understand, and live into, the fact that I have as much of a right as anyone to get up in the morning, to go to work, to live my life, and not feel guilty about it.

This new healthcare bill tells me otherwise. It says those are not rights I have, that I’m not worth it, not worthy, and nothing but a burden. After all I’ve worked for, I don’t even have words to describe how big of a slap in the face it is to have the government of the country I’ve always called home tell me that.

Do me a favor: take a deep breath. I have dear friends who depend on ventilators, who will be told they don’t have the right to breathe if this bill is passed. If you are able, take that breath again. Can you imagine having someone else who doesn’t even know you tell you if you do or do not have a right to breathe? No? Then help me fight.

I watched my city, Seattle, come alive yesterday in support, celebration and love for the LGBTQ community. I watched that same city break out in rage and heartbreak when a black women was killed by white cops. I’m right there with you. Everyone deserves to be safe and loved, period. Regardless of everything. But I want to make sure folks remember that includes disability too. Movements towards racial and marriage equality did not happen without members outside of those communities pushing for it, against hate. The disability community and the fight against this humiliating bill is no different. Know that.

As you wind down your day, think about everything you do that requires more than one limb. Cooking, cleaning, getting comfortable in bed, plopping down in front of the TV. If this bill is passed, thousands of Americans will be forced into nursing homes because they need help with the simple things you just did. As you take that last deep breath before you drift off to sleep tonight, know there are people who may not have that right tomorrow should the bill pass.

I have one more favor to ask: get involved. Even, perhaps especially if, this bill doesn’t touch you or your life, get involved. We need you. Call your Senators. Tell them  someone you love will be affected by this bill, and you’re not OK with it. Even if you don’t know me, I guarantee you know and love someone who is at risk. If that’s too much, that’s OK! Please share this post. I want Washington state senators (and all members of the Senate for that matter) to see my face so many times that they are forced to read my story.

I’m not saying Medicaid and the current healthcare system in this country is perfect. It’s not. What I am saying is that life with a disability in this country can be hard. Medicaid helps. It helps a lot. Its repeal without a replacement (as is proposed) would be devastating to many with disabilities. My life matters. My friends’ lives matter, and I will do everything in my power to make sure the laws of this country reflect that. That starts now. That starts today. Please help me #savemedicaid

Editor’s note: This story reflects an individual’s experience and is not an endorsement from The Mighty. We believe in sharing a variety of perspectives from our community.

A version of this post originally appeared on Macy’s Facebook page.

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Originally published: July 2, 2017
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