“But I, being poor, have only my dreams. I have spread my dreams under your feet; tread softly, because you tread on my dreams.” ~ W.B. Yeats.
There’s a reason I chose this quote to go on the header of my blog––ever since I heard Sean Bean recite this snatch of poem in the movie Equilibrium, I’ve loved it. It’s just so me, that sense of desperate dreaming. I’ve never been rich and occasionally I’ve dipped below the poverty line…but I’ve always had my dreams. Now, more than ever, I cling to this poem. I am not okay and I cannot pretend to be. I’m doing better than I was in the first three days after the vote to begin defunding the Affordable Care Act…by this I mean that I am no longer swinging from raw anger and helpless weeping. But just because the tears are now controllable doesn’t mean they have dried or that the fear is gone. “Don’t be afraid,” I hear people say. “Be brave,” I tell myself. But courage is not the absence of fear, but the overcoming of it. When repressed, fear does not vanish but instead transmutes into despair. They say confession is good for the soul so I will make a clean breast of it, hoping that in the telling of my fears, I will find my courage. And maybe, along with it, my hope and a way to move on––a way to cope with the new normal that has been forced upon me. I am giving myself permission to cry one more time, now as I write this. So if this is a little less coherent than my usual, at least you’ll know why.
On November 9th, during Hillary Clinton’s concession speech and in the middle of my work day, I broke down. “There goes my brother’s health insurance,” I sobbed, shaking so hard I thought I was going to throw up. I knew that repealing the Affordable Care Act was at the top of the Republican agenda…and they had just won control of Congress and the White House. I knew what was coming. Many people tried to tell me it would be okay, that the Republicans wouldn’t repeal the ACA without a replacement plan in place. They told me I was over-reacting, that things wouldn’t be as bad as I was saying. “Repeal and Replace” is the motto I have heard since the election. And yet last week, both the Senate and the House of Representatives voted to defund the ACA…with no replacement plan in place or even drafted. When I called my representatives and senators and asked if they had a plan and what it would be, I was told “Oh, it’s coming, just wait”. There is no plan in place. They will repeal the ACA and then, maybe, come up with a replacement plan. Eventually, after they push it through all the levels of government.
And I am afraid.
I am afraid for the present because I have a brother with autism and a mother with auto-immune diseases. I remember the days before the Affordable Care Act. I remember the discrimination, the outrageous premiums, the denial of services. Finding insurance companies who would even cover their diagnoses was difficult, painful. Those that would charge outrageously high premiums…and they would often deny services. Anything related to autism (or be linked by the most slender of threads) was often refused, leaving us being charged out of pocket, while still paying for insurance. I remember laughing aloud with joy when the ACA passed…because now we had options. I know that the ACA isn’t perfect, and I’ve never claimed that it was. Still, it gave me something precious: it gave me hope and help.
Now that it is being gutted without a replacement waiting in the wings, that help is gone…gone with the suddenness of a rug being ripped out from under me. Now it is back to the bad old days of unchecked greed and discrimination. Without the ACA to help, my brother’s insurance will go from a little over $100 to half my monthly paycheck. And what about Mom…will she be able to get treatments now if she needs them again? What about all the other people I know who depended on the ACA even more than I did? What’s going to happen to them now? How many will suffer?
I am afraid for the future. I am afraid because I have begun to think about starting a family of my own. Now…now I don’t know what to do. You see, statistically any children I might have are pre-disposed to have something on the autism spectrum. I am not afraid of having a child with autism: my brother has it and even if I could, I wouldn’t exchange him for a “normal” one. I know autism is not a curse and that levels of ability do not determine a person’s worth to society, or make them broken in the eyes of God. An autistic person’s full potential is not to become neurotypical.
But while I know the joys that come with autism, I also know the challenges. I know what it will take to give an autistic child the best shot at a good life: early intervention. If I have a child and that child has autism, I want to be able to give them every opportunity to make the most of their unique gifts and limitations. Good prenatal care, holistic environment, good diet, early access to therapy and personalized education––the works. All that is obviously quite expensive, ranging from difficult to impossible when you aren’t wealthy; but the ACA and similar programs made them more accessible to low income families. With the ACA, I thought that I would be able to focus less on the basics of good health care and focus more on education for any children I might have.
Could I live with myself, knowing that my finances and the political climate placed more limitations on my child than nature did? It’s a question without a wrong answer––which makes it more difficult. I don’t know what I’ll decide, but my decision will be made on a knife’s edge between fear and recklessness, hope and naiveté. It’s one thing to say that children are a blessing and quote all the pro-birth slogans…but I could very well bring a child into this world that would never be what we call “independent”. That is the reality of the choice I face.
Either way, all I know is that before this election, I didn’t think I would have to choose. With the ACA and the legacy of Obama’s progressive equality, I liked my chances of protecting and expanding my family. And now it is going, going, gone. My trust has been shattered and along with it, the dream that I could have it all, the dream that I wouldn’t have to struggle like my parents did to raise a wonderful person with ASD. The dream in which a child of mine would be valued by society at large the way they would be valued at home––no matter how their brain was wired. No matter where they fell on the spectrum of human sexuality or what color their skin. And maybe this “amazing” new program will be unveiled in a year’s time, or six months…maybe it will even be the ACA, just repackaged under a new president’s name. But even six months without insurance can be a literal case of life-or-death, financial ruin or success.
This vote has taken from me my peace of mind and replaced it with only a promise…but a promise won’t help me in the meantime. A promise from people who dismissed my concerns does not compare to the lifeline they ripped from my hands.
What’s a dreamer to do? I guess I just go on. I have my family, my friends and my God; I have my dreams and my words to describe them. I guess I step up and try to throw myself into the ACA-shaped hole in our lives: I tighten my budget and I decide what I am willing to sacrifice for my dreams. It’s Martin Luther King, Jr day…today of all days I have no excuse for allowing fear or the political climate to kill my dreams. Today, I am reminded that I am not the only one with a dream or the only one hurting right now.
It’s just so hard. There. That’s all my tears and fears laid bare to the world. Tread softly, because you tread on my dreams.