…because I can’t.
As I live and breathe, my fight must go to my children. I’ve written about embracing disability- we do not run, fear, regret, or feel shame about disability. We do not use the ableism terms: differently-abled or handi-capable. And as I type, hunched over in the dark, wee hours of the morning with a steaming cup of coffee and tears in my eyes, I wonder: what did we do?
It’s been a long time since I wrote a letter, so I begin here.
As I held you Friday night, I could feel us settle into a familiar cadence- one I have missed. Your breathing heavier, more labored than my own- something it’s always been- but recognizable to me as you at peace. As I do often before I fall asleep, I did a self-check and said a little prayer, noticing my own breath was not quite as calm. Jagged sips of air slipped through my lips as your sister prodded your sleeping body, begging me to let you go to nurse her, finally giving in when she realized you were not pretending.
I saw it then.
How much she cares.
And my heart lifted.
But I write to you from a place of broken. Of unrest. Of terror. For you are not safe.
Decisions are being made about you from a table of people who know nothing of your life. Your story. The gumption of others in support have rallied, and what I thought in the past was a parental decision to hide from you, I must swallow and bare.
Adelaide, there are people who do not want you.
You are not alone.
My darling girl, you surpass the children in your class with cognitive ability and imagination. You climb with such physical awareness, parents often ask me how?, and you love so wholly I feel ache in my body when you release a hug. But people do not want you.
I never wanted you to know, but the danger lies in what people fail to see. When I fight, I fight for you, and that will never stop. In the past 4.5 years I have been told
- to send you away
- let you pass in your sleep
- to give up
- that some people are not compatible with life
- that I’ve created a dependent
- that I must have sinned
- that I must have been on drugs
- that your father must be an alien (please, let that make you laugh)
- that I should have had an abortion (no-doubt, this came from a pro-lifer… explain that to me)
The list goes on, but further than this and my heart may cease to beat life into me… because I cannot believe that people feel this way about anyone. And in this, I will not single you out. Because no one should feel this way about anyone.
Much of this hinges on current policies put in place, or threatening to take over, including ones that will threaten your life. With a Mima as political as your own, and us (mom, dad, and Millie), there is a fire burning that will protect you. This is a promise I beg we can keep… But there is fear, as well.
I fear that we will have to register our disabled, as we will have to register religion. That we will, someday, have to hide you from those who want you gone.
I fear finding a way to further your education, as your [disability] rights are stripped away. Knowing that you’re not considered equal, let’s not even mention equatable, is baffling to me.
I fear lifetime capping and pre-existing conditions reentering the healthcare industry, for you will surely lose coverage at some point in your life and be unable to regain it. This fact weighs heavily on your biggest, though often silent, champion, your Dad.
I fear the people who have said terrible things to me about you, will act out upon the disabled. Your life being at risk…
Are we not the free world anymore?
I so much want to march for women. I want people to know that giving a woman the right to choose for her body is not their choice. Regardless of their beliefs. That is the meaning of freedom… and damnit, freedom is hard.Freedom is hard. Click To Tweet
When we see others do something that we don’t agree with, it makes us buckle. But it is not our right to choose. And I want to share that opinion, near and far in the streets, in person, with witty signs among women I respect.
Adelaide, I had you because as a broke college student with insurance that would not cover an out-of-state physical, I went to Planned Parenthood in Providence, RI. My exam revealed abnormal cells. I went back for a second test. These tests lead me to Yale New Haven Hospital. To surgery.
Without Planned Parenthood, I would be sick. Very sick. But I got inexpensive healthcare, from the only medical facility that would take someone with out-of-state/no insurance. I believe women have rights, baby girl… but more than your gender, people see your disability. I want to walk with them for us.
But I cannot, when my energy is better spent reminding others that while they fight for freedoms, I need to fight for your life. Because whatever anyone else does with their body, is their right… and what they want to do to your life is not.
It is no one’s right to threaten your right to equality.
It is no one’s right to decide your future by stripping you of opportunity.
It is no one’s right to demean you.
It is no one’s right to hurt you.
It is no one’s right to end your life.
This is eugenics. This is where it begins.
And I won’t let anyone take you.
This is raw fear, streaming from my finger tips to the keyboard. This is nothing left in me, but terror. This is a president caring about his popularity more than his people. The people he doesn’t want to protect. The living, right here in front of him.
We fight for you, Adelaide. As Millie proudly states, I always protect Addie. A phrase and meaning I never thought I would have to teach your 2 year old sister. Something I didn’t want her to have to get. But she does.
Addie, our beautiful girl, you are someone with a disability, with achondroplasia. You are also someone with a beautiful vocabulary, an amazing imagination, beautiful hair down your back, a smile that beams, the most passionate hugs, the silliest dances, a personality that hops off your body and infects everyone you meet with laughter and joy. You have all those things. What you are?
What else could you ever be?
The fight is on. Love,