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The Privilege of Survival

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There’s a phrase going around a lot. People are saying it to make each other feel better, but to me, it’s not making anything better. In fact, it’s making things worse.

“We survived Reagan.”

My father did not.

My father, Michael John Norman, was one of the 388,253 people who died during the initial AIDS epidemic between 1981 and 1995 per the CDC. Alongside him, his people died. During my childhood, we lost people to complications resulting from AIDS, we lost people to suicide when they found out they carried the disease in their veins. We lost whole communities of artists, of gay men, of people of color.

And I lost my father.

I am a permanently disabled woman, living and thriving in Trump’s America, and I am watching the world turn as threats to the ACA aka Obamacare threaten the lives of my fellow disabled Americans. This is a repetition of history and I do not want to survive the dead again. And yet, it looks like that is my future. Last night, under cover of darkness, the Senate had a preliminary vote to repeal the Affordable Care Act. They voted while part of the country slept, thinking they were safe. I watched at 11pm as the tweets rolled out, people fearing for their lives.
I do not want to repeat my father’s legacy, nor the legacy of queer communities across America.

When you reassure people that we survived Reagan, you reassure a white, able bodied, straight, cisgender America. You are not speaking to those of us who watched in horror as our communities fell, or those presently waiting for the sword of Damocles known as the Trump administration to fall.

There are no places to point the finger when a disease kills a parent. You can’t point at patient zero, for example, and say it’s their fault.

Except in the case of AIDS in America. In the case of AIDS in America there is someone responsible. Someone we can hold accountable for the way in which the disease spread. Ronald Reagan’s administration laughed at AIDS. They called it a gay cancer. They didn’t take it seriously because it was killing people they didn’t like. So funds didn’t get funneled to the research fast enough.

A lot of people died because the President of the United States didn’t care about a marginalized group. And I’m scared down to my bones, because I think it is going to happen again.

As of writing this, Donald Trump has nominated Steve Bannon,  a known white supremacist, to be his chief strategist. He’s nominated Jeff Sessions, who believes that disabled children are the cause of the erosion of civility in the mainstream classroom.  As of this writing, he’s waffled on whether he is going to repeal Obamacare. As of this writing, I know of people who have committed suicide because they were afraid of the future, and I see the wheels of my own history turning once again. It’s not even an idle fear, graffitied swastika’s are cropping up, people of color and women are reporting an uptick in violence against them. Even I have experienced prickles of fear in response to strangers on the street. Marginalized people are already feeling the threat of this administration.

I am terrified for the children of disabled parents, terrified for the children of gay fathers and of Jewish mothers, because I do not want them to experience the fear I felt as a child. And I don’t want them to experience the realization as an adult that their nation failed them. I don’t want them experiencing the fear I feel now, either.

I grew up knowing what it meant for someone to die, and even more, I grew up knowing what death looked like. I knew that it lived in my father’s blood, and I knew that death could be caught and housed in my own veins if we weren’t careful. There could be no mistakes in my childhood. No quarter given.

And I grew up knowing what hate looked like too. It looked like the people who called my father a faggot. It looked like the people who winced when they heard the name of his disease, and it looked like the people who asked whether or not I was allowed to hug him.

When I look back on that time, I see a sea of hate, and I didn’t see it at first because I was a child. But now I know, it wasn’t just a disease that killed my father. It was hatred and loathing for difference.

So don’t come to me with your “we survived Reagan” lines of comfort. Don’t come to me saying that we will weather Donald Trump the same way we did Ronald Reagan, because that way lies death, and the failure to protect whole communities from hate.

Don’t come to me, a woman with AIDS quilt panels in my home, with your hollow words of comfort because you and your community were safe. We were not safe.

We did not all survive. And if they do succeed as they intend, to repeal the ACA, to repeal protections for veterans, for people with pre-existing conditions, they will invoke a legacy of eugenics. A legacy of believing that if you cannot get treatment, you aren’t meant to live.

So I’m gearing up to fight. I’m calling my senators, and my representatives. I’m reminding my able bodied friends that I do not want to die, that I do not want my friends to die, and that I am not safe.

The night that Donald Trump was elected I knew that I would be fighting for my life at one point or another, but I had hoped that it wouldn’t be so soon.

I had hoped, but my hope was not to last.

Don’t let me be a part of the narrative that I was born to. Please. Stand up and protect your fellow citizens. Those who might eventually be disabled, those who already are, protect those who’ve had cancer, those who’ve got siblings with Down Syndrome or autism, protect your grandparents or your neighbors.

Please protect us, because you’ll miss us when we’re gone.

I know I miss my father.

Don’t let them couch repealing the ACA in terms of saving money, make them face that the ACA saves lives, has already saved them and if kept and protected will save more.

Don’t let them repeal it without having a plan in place. Don’t let them let you down.

Don’t let them let me down. They may say that we’ll make it, but it’s a lie  – and we know that because of the legacy of the past.


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