A Repost: Fixing Chariots

on disability, ableism, Roe v Wade and a woman's right to abortion on demand

Picture of woman standing behind young adult woman in a beach wheelchair at the edge of the water.

Note: I wrote this post in August of 2016, on the eve of the Trump election. In the last couple of days, I’ve begun to hear talk about disability and abortion and topics that I’ve wrestled with as a mother and primary caregiver to a severely disabled daughter. I don’t need to write much more, as those words in the post below still reflect some of my deepest thoughts. I would add that raising Sophie has imposed an intuitive understanding of these things, but I’ve also recently learned the literal term and language of ableism, that it’s easy and convenient for most of us to be ableist — to project our own ideas and thoughts about what it means to live a fulfilled life, a life of integrity. What is it exactly, to be healthy? When is a life worth living? What, exactly, is pleasure for a woman? Of what value is marriage and the nuclear family? Why do we depend on unpaid labor, predominantly done by women? Why is motherhood revered in patriarchal cultures? How are these things, these values twisted into exploitation of women’s bodies, property, the earth itself? I’ve become more radicalized about issues related to women, especially, to child-bearing, capitalism and patriarchal systems. I have been steeped and raised in them and feel if not suffocated (my privilege), then mired. As I age, though, I am infinitesimally extricating myself at least in thought, in imagination. I am recovering my body, if you’d like, or becoming more embodied even as my imagination does much of the labor.

I’ll also leave you with the following statistics that accompany the statement Abortion rights are disability rights.

The organization No Limits Media posted a series on Instagram this morning that are pertinent:

1. What does the overturn of Roe v Wade mean for the disabled community?

2. Contraceptives and Sex Ed are inaccessible to people with disabilities. As well as health facilities. A 2017 study of 200 mobility device users showed that 41 percent of users had experienced accessibility issues with exam or treatment rooms within the previous 12 months. (1)

3. 90% of all people with developmental disabilities will experience sexual assault. (2)

4. For a large majority of people with disabilities, having a kid means life or death.

5. “For someone like myself who has osteogenesis imperfecta, who may not be able to safely bring a baby or fetus to full term, my life is on the line if Roe drops.” (3) — Mia Ives-Rublee, director of the Disability Justice Initiative at the progressive Center for American Progress

6. Abortion rights are disability rights.

SOURCES.

1. President, Julia Cusick Vice, et al. “Reproductive Justice for Disabled Women: Ending Systemic Discrimination.” Center for American Progress, 13 April, 2022. https://www.americanprogress.org/article/reproductive-justice-for-disabled-women-ending-systemic-discrimination/.

2. https://now.org/wp-content/uploads/2018/05/Disabled-Women-Sexual-Violence-4.pdf

3. Luterman, Sara. “Exclusive: How Do People with Disabilities Feel about Abortion? New Poll Sheds Light for the First Time.” The 19th News. 10 May 2022. https://19news.org/2022/05/how-people-with-disabilities-feel-abortion/.

O.K. That’s all my tiny little mother mind™ has for you right now.

I’ve cut and pasted the post from the old blog for you here, but if you’d like to read the conversation and comments that followed it, here’s the link: Fixing Chariots.

Thursday, August 11, 2016

Fixing Chariots

Sophie has a wheelchair that we received after about nine months of wrangling with the various agencies and insurance companies. It cost just under $10,000. All the paperwork is in a file that I labeled Sophie's Chariot.  Yesterday, I spent about thirty minutes trying to thread one of the straps back in so that she could be secure. I used tweezers. I fixed the Chariot.

I had an interesting discussion on Facebook the other day on a thread responding to Florida Senator Rubio's assertion that he wouldn't support abortion for those fetuses affected by the Zika virus. Since I've basically weeded out or hidden all my "friends" that have right-wing viewpoints (in the name of sanity during an election year), the comments were predictably liberal-minded with much derision toward Rubio. Given that the man also believes that a fetus should be carried to term even if the woman has been raped or in cases of incest, I was not surprised by his vehement response.  I should make my own assertion here that I am, of course, utterly "pro-choice" and do not believe anyone has the right to tell a woman what to do with her body, including the fetus, should she become pregnant.

Marco Rubio can go f*&k himself before telling me about the sanctity of life.

Where I get squirmy, though, is the talk about aborting children with microcephaly.

This is a post about some squirmy stuff. I don't want to argue and will just present what I'm thinking about when I hear people talk about Zika and microcephaly and abortion, and before there was even knowledge of Zika, these would have been the same thoughts regarding abortion and any sort of disability.

Again, I am decidedly pro-choice and believe unequivocally that it's the woman's right to make decisions regarding her body and that, should she make the decision to have an abortion for whatever reason, she has full and equal access to the procedure with her doctor.


Here are a couple comments from the Facebook thread:

• So. He's planning on putting through legislation that ensures these children have life-long free medical care, schooling, aides, wheelchairs, dental and all things they will need for the next 50 plus years, RIGHT?

• In that case, little Marco and the so-called "pro-lifers" should adopt, raise, and continue to support indefinitely each and every one of the severely handicapped children that are born of Zika-infected mothers.

My first thought is how everything -- literally everything -- is reduced to economics -- or how should I say it? -- worth and value. These children, born of women infected with the Zika virus, are not just a great burden to their families but also to society. This kind of reasoning reminds me of how people argue against the death penalty by stating that it's "more expensive to kill people than to house them in jail for a lifetime." Again, I'm just throwing out some of my thoughts here. 

What if we shifted the whole paradigm and asserted the primacy of the vulnerable, how the disabled bring a certain light to the world and evoke the best in the rest of us. I'm not implying that there's a reason for suffering, a plan or some sort of divine imperative. I don't believe in God that way. I believe more in chaos and, perhaps, meaning wrought from it. Sophie is not here to teach me through her seizures and silence, but I am here to learn what it is to truly love.


Here's another comment:

Anybody ever tell these 'interventionists' about the kids that won't be born, because the one they compelled to be born will take the time, energy and finances of the potential kids a couple might have had, were they not over-burdened with the deformed child an abortion could have prevented? Seems to me, there are more potential children condemned to "death" than the fetus the anti-abortionists insist on bringing to term.

Cartoon thought bubble:

Hard as it might be to believe, over the last couple of decades, I've had several people ask me whether I would have aborted Sophie had I known she would have refractory epilepsy and severe developmental disabilities. The hard to believe, for me, is the audacity of the asking, not the answer. I have learned to literally live the questions and not the answers. I have no answers. I've said it before, but I hold opposing thoughts and ideas at once. My hands, you know, are large and strong. When I was pregnant with Henry, I declined an amniocentesis because I already knew that we never know. I was thought a fool by those who advised otherwise. Fools never know. When Sophie was diagnosed, I mourned for what seemed like lifetimes. I mourned the loss of the baby that I thought I had carried and then brought into the world. I thought that she had been replaced by a new baby until I realized that she, Sophie, was always who she was, had been so since spark and stardust and love created her. The mourning never stops, but neither does the love.

Remember hands, how much they carry. It is both terrible burden and incredible honor to care for Sophie. I couldn't do it again and I'd do it again, And not but.