In the early days of being pregnant, the mystery of creating a new life inside of me welled up in moments throughout the days. I was filled with hope that these cells would indeed grow into a life, knowing this gradual process so often ends abruptly. Slowly, very slowly, this hidden mystery became real.
But, the sacred mystery became distant as I rounded into the second trimester of my pregnancy. Amidst blood draws and ultrasounds, I felt like my medical record number was trying to claim my entire identity. The medical system reduces us down to 15-minute visits with doctors who order tests and procedures, who dictate exactly how much weight we should or should not be gaining.
Meanwhile, in social settings, I faced the constant inundation of nonconsensual comments about my body that was growing rounder and slower. Again and again, I was asked to repeat the status of how I was feeling — “Fine now, but I did have a lot of nausea before” — followed by other parents projecting their deepest regrets of parenthood onto their advice for me. Non-parents, particularly people who had chosen not to give birth themselves, projected the narrative patriarchy had fed to them on me: that either you could have a successful creative interesting life OR you could be a birth parent, a mother, and settle for a life of diapers and bedtimes.
I fell into depression. Did you know that depression DURING pregnancy is actually MORE common that post partum depression? But, because post partum depression impacts babies too, and depression during pregnancy only impacts the birth parent, our health system’s embedded patriarchy provides little support.
Pregnancy and new parenthood are located at an intersection of patriarchy and ableism, with a society believing that birth parents entire identities can be reduced down to their pregnant and post partum bodies.
As a pregnant person, patriarchy placed me squarely in an antiquated role of mother – that soon, my life would end and I would take on motherhood. I would spend my days at home taking care of a child, while my husband would work, and together our social life and creative life would dwindle down to nothing. Strangers felt compelled to go to great lengths to comment on my body and proscribe my identity to me.
And, as my body became bigger and rounder and my movements slowed down to grow a baby, ableism saw me as incapable, a subject to be tested and monitored, and a data point in the medical industrial complex. Ableism created a doubtfulness about my body, such that when I shared that I had a gig at Yoshi’s the night before my due date, people were surprised and sometimes questioned whether it was indeed possible to play trombone while 9-months pregnant. (It was.) Pregnancy caused many changes in my body – impairments in the terminology of disability studies. Accessibility to me meant having scent free spaces, chairs, and no narrow passages to squeeze through. In a social model of disability, it is society’s lack of accessibility for our impairments that causes the experience of disability – and in pregnancy, ableism dictates a narrative of helplessness and lack of choice, and being incapable and less than as our bodies reach their limits.
At the intersection of patriarchy and ableism is a narrative that fits into the archetype of traditional motherhood – the woman who is forced into staying home to parent, whose body is not her own, who lacks choice and agency in her life.
Pregnancy did not feel like a sacred and mystical experience. It exhausted me and wore me down.
Yet, we long to connect to this embodied mystery. We have so few experiences in our lives of profound sacred embodied connection – this has been taken from us in the sterilization of spirituality. Our patriarchal religions deny us access to embodied uterus mysticism, negating the voices of women, and giving the creation of life to a god gendered with he/him/his pronouns. We are removed from birth and death, separated from our bodies. So, people want to talk to us about our pregnant bodies, in a meager attempt to connect to this mystery, though our cultural norms don’t give us the tools to authentically be with the fullness of the mystery.
Instead, we reinforce patriarchal beliefs about parenthood and ableist attitudes about our bodies. Instead, we confine our identities to a singular narrative – two parents married choose to have a baby, and do so without complications, fitting neatly into antiquated gender roles, and feeling joy the whole time. We are reduced down – though none of us really fit this narrative. And we lose the mystery.
But, this embodied mystery is still there for us to reclaim. Pregnancy and birthing ARE an incredibly mystical embodied experience. Creating a new life in our bodies and then laboring to birth that new life into a new human being is sacred.
I know this from birthing Ina. We were lucky and we had the birth experience I had hoped for – fully embodied natural childbirth, in the comfort of our home. Moving between yoga balls, the bathroom, the bed, the birth tub, I labored, embracing the intensity of the contractions and the beautiful moments of rest in between. Even as I started to push, I dozed off in the birth tub between contractions, holding calm and embracing the intensity that was to come. I was at choice in how I wanted to birth – choosing what next step to take at the pace I needed, without pressure, or the impositions of norms. I found my strength, and I reminded myself, this is how all of us get here, and the only way out is to have a baby. And I did, and at the end of it, Ina laid on my chest, and I fell absolutely in love with her.
But, the story doesn’t end there. I haven’t really been able to breastfeed Ina. A series of challenges compounded upon each other and suddenly in the midst of a pandemic, I’ve ended up almost exclusively pumping and feeding her breastmilk from a bottle. This is not the choice I wanted to make, and still not the choice I want to make as we continue to talk to lactation consultants. In another time and place, other lactating women and breastfed babies would have supported us with the experiences we needed to really get it figured out. But, we lack enough access to elders and support, made even worse by pandemic, and so we struggle on in isolation. Lacking this choice has been an experience of grief.
When we reject the singular narrative dictated to us, and embrace the embodied mystery of pregnancy, birth, and sustaining new life, we must embrace both the beauty and the grief. There is grief in the lack of choice we have in our human bodies that we cannot control. But, there is also grief we must hold created by humans in the systemic oppressions of our society. We must be able to hold the miscarriages and infertility, unplanned pregnancies and abortions, pregnancies caused by violence and parenthood that survives despite domestic violence. We must be able to hold the grief of unwanted interventions and traumatic births, emergent C-sections, of stillbirths, of maternal deaths. We must hold fully that there are disparate impacts of maternal outcomes by race such that black women are 4 times more likely to die in childbirth than I am. Holding embodied mystery means holding all of these stories and all of the many more stories not named.
We must also hold the grief of the lack of choice of the world we bring our babies into. For us, choosing to get pregnant meant choosing to bring Ina into a world where climate catastrophe would happen in her lifetime, where she would be another white person in white supremacy and thus cause harm as we all do, where patriarchy will try to take away her freedom of choice, where injustice and oppression are overwhelming. But, we thought at least she’d be able to dance and hug and sing with others. But amidst pandemic, we also grieve the isolation we all now face.
This holiday is one to honor the embodied mystery of creating and sustaining new life. It is a holiday to honor the people who birth this new life, and also those who do not birth but are the village that sustain that new life. We celebrate the joy in the smiles of the babies and how it lights us up as parents and community. We celebrate the full village that gives wisdom and love. And, we grieve all of the experiences of loss that come with new life. When we move beyond how oppressive forces reduce us down, our hearts must grow to hold the fullness of the love surrounding this embodied mystery. May we be able to know the stillness to hold this mystery now, even in this world. May our hearts grow to hold all the love needed. May we all live into the embodied mystery fully.
This was shared as a Mother's Day reflection at First Mennonite Church of San Francisco and can also be found on their blog here.
Recently, the San Francisco board of supervisors (including progressives Mar and Ronan) voted to implement an aggressive measure to impose conservatorship on people who access emergency mental health services often. (Read more about that here.) Groups like Senior and Disability Action and the Coalition on Homelessness opposed the measure, advocating for the rights of people with mental illness to have access to voluntary services before they are in crisis rather than being conserved for ending up in crisis. After the rules committee members spoke in committee against the measure, when it came to a vote for the full board, only Walton voted no. Hillary Ronan and Gordan Mar, two "progressives" didn't speak against it and voted yes under the mayor's pressure.
I first learned about conservatorship as my brother reached 18 years old and registered to vote and for the selective service, as required of him by law. I learned of it in sentences like "He is his OWN guardian," spoken by my parents again and again as my brother signed legal documents for himself. Now, when I accompany my brother to appointments, often a receptionist will ask me to sign, and I repeat similar sentences as my brother reaches for the pen. Perhaps this is why my brother, unlike most adults, loves doing paperwork. It is a time where just by signing his name he gets to assert his rights and give a casual "F--- You" to the ableism that assumes he can't make his own decisions because of his down syndrome.
My brother has an intellectual disability, which means there are some things that he has a hard time understanding. But, there's plenty of things he does understand, and meanwhile he's way above average at reading people's emotions and telling hilarious jokes with perfect timing.
I, too, have a hard time understanding some things - such as medical or legal information. I know that on important things like this, it is important for me to ask for help from a trusted person that I know that can help me, and so I do. Sometimes I get more than one opinion before making a decision, and I weigh how much I trust the person giving advice heavily as I decide.
My brother does the same thing.
One thing about growing up with a brother with down syndrome is that you get to know lots of people with intellectual disabilities. As I think through my childhood friends, it's easy for me to imagine them most doing the same thing, too.
So why do so many of them have a guardian?
Some people argue that someone might take advantage of them. Yeah, that's true. But, I got news for you, that happens to the rest of us too... and I'm thinking about some big scale scams, like all those predatory loan scams I witnessed during the foreclosure crisis. People without any intellectual disability had the right to make their own decisions to sign terrible loan documents and lost their homes, and their family's generational wealth - but there, we blame the scammers and the big banks for their manipulation and greed, rather than blame the people who were taken advantage of or suggest that these victims should lose their citizenship because they got scammed. People with intellectual disabilities should have the same rights, even if they, too, make mistakes just like we do.
Many of my fellow siblings of people with developmental or intellectual disabilities are guardians - or will someday be the guardians - of their disabled sibling. I urge you to think about how your own internalized ableism is contributing to you continuing in this pattern, and how being in this role then furthers that internalized ableism.
There are people who should be conserved, who should have a guardian, but I think they are very few. I believe that people with mental illness and developmental/intellectual disabilities have the same rights as all of us - and I stand horrified that the SF board of supervisors passed such a dehumanizing policy, and stand most horrified that so-called progressives like Ronan and Mar voted for it.
I’m concerned about the $20 Million proposed cut from the State Councils on Developmental Disabilities, the $38 Million proposed cut from family caregiver services, and the $8 Million proposed cut from the already dreadfully underfunded Independent Living. More than $100 million in cuts have been proposed from a range of disability services in this budget, but everyone is talking about Special Olympics.
My family has never supported Special Olympics, and my brother has never participated. I remember as a small child learning that Special Olympics, like Special Schools, were a form of segregation, of Separate and NOT Equal, for people with disabilities. By creating a separate athletic program for disabled children, the mainstream athletic programs didn’t have to be equipped to meet the needs of children requiring accessibility accommodations.
And clearly it isn't so simple. I know lots of people who have participated in Special Olympics and had wonderful experiences as athletes. And, there are other disability athletic programs out there that allow people with disabilities to have their own space for athletic pursuits, free from ableism from others, and that's awesome. But, it is true that we should at the very least give a critical look at Special Olympics.
Special Olympics plays directly into the trope of inspirational disability porn – the many, many stories, usually told in video format, that show how an individual with disabilities overcomes great obstacles to achieve something (often something fairly normal), with the goal of making non-disabled people feel inspired by them, and carrying the underlying message of supporting a “pull yourself up by your bootstraps” mentality. There are dozens of Special Olympics inspirational videos every year, and they get shared by people who haven’t even thought about how they can create greater accessibility in their communities to allow people with disabilities to fully participate in life. We can be “inspired” by such videos while simultaneously othering the people featured in those videos, assuming they will be in a separate space, and not considering including them in our lives.
Yes, people with disabilities should have access to physical fitness programs that value their strengths, allow them to pursue the goals, and feel seen for their accomplishments. But, SO SHOULD EVERYONE ELSE. This isn’t a “special” need – it is the same need we all have. So why not create athletic program opportunities for everyone to participate in, and make sure they meet the needs of people with disabilities? That would undo some ableism and transform the culture of physical fitness spaces, making them more welcoming for everyone.
There’s a great video about ending the use of the word “Special” for people with disabilities. I recommend you watch it. And, I’ll add to it, that as the little sister of someone who was constantly called “special,” I felt like I could never be special enough to be seen. And, I’d also add that now folks say things like, “Well that’s special” in a way that they used to use the R-word – changing the word doesn’t change the ableism. Let’s address the ableism and create accessibility for everyone.
So, there’s a lot of cuts I’m concerned about. And if you want to stand in solidarity with people with disabilities, I suggest you care about some of those cuts, and not just keep highlighting Special Olympics. You can learn more in the Sibling Leadership Network’s March 2019 policy news here.
I was asked to write about my experience with the Coaching for Transformation certification program through Leadership that Works in Los Angeles, CA - and this is the letter I wrote to coaches interested in enrolling in the program:
I have a whole shelf dresser drawer filled with old journals, thousands of pages I’ve written for myself over the years of my life. Some of them pre-date my learning to write in cursive, and others date from when I gave up on having a cursive that even I could read and went back to printing. The early volumes reflect an earlier stage in my development, and my written words over time show growth in who I am, what I think, and how I act. I’ve written many words about finding my voice – but perhaps it isn’t something to find and something that develops, just as the voice writing all those pages has developed. It is in this spirit that I begin and dedicate this blog – may we together develop and grow through these words, and may sharing of words allow us a space to transform each other.
Please note: Because I believe in never reading the comments, I have deactivated the comments feature of this blog. However, I welcome your thoughts and words in the form of an email through the contact form – and it is my intention to engage thoughtfully in any such dialogues and use any feedback for growth and development leading to new content. Thank you for any of the ways you choose to engage – I’m grateful for your listening.