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A screenshot from a video. Across the top the title reads "Holding Moses: Motherhood in the Face of Disability." The caption at the bottom reads "I had no idea what I was in for." In between, two tattooed arms caress a sleeping boy under a sports ball comforter. — A screenshot from Holding Moses, a new documentary from The New Yorker.

Holding Moses, a new short documentary from The New Yorker, is beautifully shot — and hard to watch.

The film is a frank look at medical motherhood through the experience of Randi Rader, a queer single mother who bravely exposes to public view the swirl of intense emotions that come from giving birth to and raising a child with significant disabilities.

Though it is only 17 minutes long, I had a number of reactions to the film. Mostly: gratitude that it had been made and fear about how Rader’s story would be received.

As filmmaker Rivkah Beth Medow says in The New Yorker piece that accompanies the film’s debut:

Caregivers are a “deeply invisible community,” and sharing complicated feelings about caregiving can feel like “taking up space” in a way that feels “selfish, inappropriate, or unacceptable.”

As Medow and co-filmmaker Jen Rainin seem to share my goal of staring unashamedly at this particular life experience, I wanted to riff on the ways Holding Moses matches and doesn’t match my experience and others’.

As Rader says in the film, before she had a child with a rare genetic disorder, she thought that disability was only one thing and that thing was Down syndrome.

“I had no idea the spectrum of disability that exists,” she says in the film.

She — like me — had no idea the huge spectrum of disability that exists in the world (and therefore the range of caregiving experiences) largely because mainstream society only likes to talk about one storyline.

In that respect, that is my biggest criticism of the film. It follows a familiar happy ending arc that folks can feel good about. Prejudice vanquished, love found, Rader and her beautiful family can ride off into the sunset together. The viewer need not do anything more to examine how The Raders could have been better cared for from the very beginning of Moses’ life.

The acceptance story is a good story and a worthy story. But it is only part of the story. Medical motherhood is messier than that. Just on the acceptance front, it is so complex and involves multiple layers of acceptance. Sometimes you find out that something you thought you had accepted, you actually hadn’t. Sometimes you find out that you didn’t actually understand what it was you accepted so you have to accept it all over again. And it often involves accepting even more loss as more abilities are lost or milestones that were never initially considered pass by.

Medical motherhood also involves tussling with multiple school, medical and social services systems to get what your child needs. It involves burnout and isolation and depression. It involves caregiving needs that are always present and never-ending. It involves second-guessing yourself and desperately wishing you’d known before what you know now.

For example, the documentary starts out with Rader describing Moses as being a newborn who didn’t cry much. As a medical mama, I instantly wondered if he was getting enough oxygen or needed other medical attention that she was not aware he needed. Medical mothers often have stories about their concerns about their newborns being brushed off. Until one day, after it’s too late, they are finally taken more seriously.

I enjoyed the physicality that the filmmakers show, both in Rader’s performances (she’s a dancer) and in her caregiving. Caregiving to a child with a disability is full of emotion and up-close physical touch.

While Moses’ “disposition is extremely sweet,” and there are many kids who fit this description, there are other disabilities that directly impact a child’s mood and behavior. This can be either be a direct result of their disorder or through secondary trauma. Those children are difficult to care for and I daresay their disabilities are tougher for their parents to accept.

Fortunately, Rader is bravely raw and frank throughout. At one point, she even admits she wished Moses would die. “It felt very much that I had lost a child,” she says. “That he had died. Yet I was still there with a child that I didn’t understand. I never felt so desperate before.”

But my favorite part of the film, and the one that certainly rings true for me, is that the turning point in her acceptance journey came when Rader met other parents of disabled children. She found that they could relate to her struggles and she could see a future for herself in their lived experience:

“They would just look at me and they’d shake their heads and they’d be like: ‘We know. We know.’”

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Watch Holding Moses: Motherhood in the Face of Disability on The New Yorker site or on its YouTube channel.

Quick interjection before we get to the news briefs.

Each week I ask myself: What would be most helpful to you?

OK, maybe it’s more like: What (do I have left to give after all of my caregiving duties that) would be most helpful to you? Because I’m in it, too. I’m right here with you in medical motherhood.

Do you know other people in these trenches? Would reading information and news specific to their needs help them? What a gift: to feel less alone, less afraid, less unsure.

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Medical Motherhood’s news round up

Snippets of news and opinion from outlets around the world. Click the links for the full story.

• From Understood.org: “Common Thanksgiving challenges for kids with ADHD”

As enjoyable as Thanksgiving is for some families, it can often be a difficult time for kids with ADHD to manage. That’s especially true if the holiday involves gatherings and long sit-down meals. Here are some typical trouble spots and what you can do to help. […]
Key takeaways
Talk with your child about how the day will go before it happens.
The more kids know what to expect, the less chance for anxiety or conflict about the change in routine.
You can even practice some possible dinnertime conversations or interactions beforehand.

• From The Washington Post: “Social Security left at-risk Americans behind in pandemic, report finds”

The abrupt halt to almost all in-person operations at the Social Security Administration during the coronavirus pandemic was debilitating for the most vulnerable Americans, a new report has found — undermining President Biden’s pledge to ensure equitable government services.
With its 1,230 field offices closed for two years, millions of disabled and poor elderly people could not get help applying for Social Security benefits, and for many of them, there was no online option, the Government Accountability Office found in a report released Thursday.
[…]Millions of people filing for retirement benefits went online. But those applying for benefits under Social Security’s two disability programs — the antipoverty program and another for those with work histories — plunged 18 percent and 12 percent, respectively compared to the volume of claims before the pandemic.
[…]The decline was precipitous among disabled children and those who do not speak English.
[…]The report found that without a plan to address an anticipated surge in demand for its services as more at-risk people return to the system, “SSA is poorly positioned to make well-informed decisions about its critical functions.”

• From The Current (Georgia): “Early screening for learning disabilities ‘would make a huge difference’”

Frank Pinckney wonders what his life could have been like if his parents and teachers had believed what he now believes: that as a child he had a learning disability, attention deficit disorder (ADHD) and suffered from trauma after a sexual assault.
As it turned out, none of these problems were diagnosed, which may help explain why Pinckney’s life spiraled into crime and mental illness, and substance use disorder.
“The older I got, the more my drug habit escalated,’’ he says. The spiral ended at age 32 with a three-year prison term.
The case of Pinckney, a 62-year-old Black man who grew up in a poor neighborhood in Washington, D.C., illustrates why some experts are calling for increased early testing and screening of children for learning disabilities and differences.
“If we could do this for kids when they’re little, when they still love to learn, when they’re excited to go to school, before the love of learning has been beaten out of them, it would make a huge difference,” says Teresa Giral, a clinical psychologist who heads a counseling and assessment center in the Maryland suburbs of Washington.
Instead, she says, “we wait for them to fail before we intervene.”

Medical Motherhood brings you quality news and information each Sunday for raising disabled and neurodivergent children. Get it delivered to your inbox each week or give a gift subscription. Subscriptions are free, with optional tiers of support. Thank you to our paid subscribers!

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