On Valentine’s Day, while I was stirring chili and scrolling through the day’s headlines on my laptop, a comment popped up from a Star in Her Eye reader: “We miss you,” she wrote, “and want to hear from you.”
I’m not a daily blogger by far, and usually average a post a month, but it’s true that I’ve been more silent lately. I’ve only written two posts since the election. I thought at first I should write a new post. But what would I write about? Certainly not the usual piece about, say, my daughter’s trip to a doctor, or her school’s successful efforts at inclusion. In post-election America, only the broader, public stories grip me. Only the national stories seem worthwhile.
So what larger, disability-related issue might I speak to? Betsy Devos had already been confirmed, despite either her ignorance of IDEA or her unwillingness to uphold it. Since then, the IDEA website has been down and then back up and then down again, but I don’t yet know if it’s truly a glitch (as the government says) or a bad omen for the future of disabled kids’ federally-granted rights to decent education. ARC leaked an executive order barring people with intellectual disabilities from immigrating to the country (legally ostracizing a sub-group of the world that’s already plenty ostracized. Bring me your tired, your poor...) But I haven’t heard anything about the order since. Republicans are pushing block grants for Medicaid, which experts say will decrease federal funding for Medicaid programs over time, but nothing’s been passed yet, and news reports are thin, so it’s hard for a part-time writing professor / full-time “special needs” parent like me to suss out the nuances.
What I mean to say is, all these disability-related issues look like struck matches, flickers held above haystacks. But when do we call “fire”?
Meanwhile, I am taking my kid to doctors’ appointments. So many doctors’ appointments. I wrote half an essay about the ways that medical professionals sometimes talk (or don’t talk) to my daughter. But in post-election America, what’s the point? The world might be on fire. Who cares about a few insensitive gestures from a gruff ENT?
I realize something: I don’t know how to write blog posts in post-election America. I’m perpetually in an open-mouthed state, with no words coming, with only that initial sound that means, Something should be said here. But I don’t know what that something is. It’s like when a woman at church asked me, “How are you?” That week, a Somali man named Ahmed, a man who had spent his entire 26 years of life in a Kenyan refugee camp, had been denied entry into the U.S. even though he had waited years, even though he was properly vetted, even though he held a visa. He had to go back to the same refugee camp in which he took his first breath. “How are you?” my friend at church asked, and I just opened my mouth and shook my head, but no words would come out. “What’s wrong?” she asked. “What happened?” She stood up and readied to console me. I shook my head. “No, nothing personal. Just… national.” “Oh, that,” she said, and sat back down.
This morning, I read Sven Birkert’s newsletter for AGNI, a literary journal. In it, I found what I think is the reason for my blog silence.
The split between outer and inner, public and private, has preoccupied me in this post-election season…. What is the place of the individual, the personal, in a world that has become clamorous with collective agitation?…. The expressive writer lives with this ethical dilemma. Am I being self-indulgent, turning my back on the public agitation, if I try to describe the nuances of a personal relationship, or a memory from childhood? The “who cares?” question, vexing for all of us who write even under the best outer circumstances, is amplified tenfold when the very framework of society seems to be creaking madly.
I don’t know how to write blog posts—which for me have always been personal essays—in an America that seems to be creaking madly. I don’t know how to shine a light on the minutiae of the personal and say, Look here, something bigger, when the world beyond my domestic walls is clamorous with collective agitation.
On social media, I scroll quickly past the posts about frittatas and puppies. I scroll past the personal. I don’t mean to disparage frittatas and puppies. I just mean they haven’t gripped me in post-election America. When will they? How can they? Why would they?
I don’t know. Maybe tomorrow, I’ll wake and see how my family’s personal story belongs in the digital world of reading material. For now, I’m mostly trying to listen. The news is coming fast. It’s dense, thick with urgency. I am trying to keep up. I am trying to decipher the truth. (Today, for instance, I’ll investigate this worrying bill.) I am trying to call my senators. I am trying to get my kid to the doctor’s. I am trying not to wear, always, the face of worry. I’m also trying to remember that roughly half of the electorate thinks the fire isn’t the new administration but people like me. I am trying to will myself to accept that I am a part of this larger American body, split in half.
Birkerts speaks for me here. Rightly or wrongly, he writes, I have lived my life mainly at the scale of private concern, and my thinking and writing have depended on those balances. But now the public clamor has overtaken everything. It’s where my attention goes – it can’t not.
But he adds something more, an assertion I haven’t yet found true for myself just yet. Still, it’s one I take heart in: Yet I know, when I can make myself turn away, that the personal is not – cannot be – diminished by it, not by a scrap.
Here’s a photo of Fiona and me, calling our senators after school.
So wonderful to hear your voice on this. Thanks for the courage to ramble and to share the sense of a world — or at least a nation — in crisis/gone mad. As a fellow parent of a child with major special needs, as an activist, as a health care provider, I find your words decrease my isolation.
Thanks, Tesik. Glad to reach out to you. Onward…
Thank you for writing this.
Forgive me if I speak out of turn. It is a struggle to keep up with the horrendous news every day. Every day!
Oops. Hit return. We need the voices of the writers and artists and speakers to bring some perspective to the collective chaos! There are those of us who can dig in and fight but we need the vision of you artists to define and record the reality. You have a strong voice and a talent for getting right to the core of an issue. Take care of yourself and your family, but don’t give up! Sending love.
Simply put, you nailed it. My day to day dealings simply pale in comparison to the nonsensical political happenings unfolding around me. Thank you for articulating so beautifully what I’ve been feeling. Onward indeed.
We need to keep our own private world sane so that we can deal with the chaos outside our doors. We need to be able to put things in the perspective of the mother of the girl with the star in her eye to understand the big picture and how it affects the people who depend upon the world’s sanity. Thank you for that.
You have a beautiful way with words, thanks for writing this!
In response to the craziness exploding in the world around me, I am trying to calm it down ever so slightly by sending out good vibes and kindness in the small ways I can.
Your personal stories and wise insights help me (and fellow moms who have kids with disabilities and medical issues) navigate my world and move forward towards unconditional and radical acceptance of my child.
That’s the answer to “who cares”. I do!
I agree with what has been said above–I enjoy your writing. I also agree with what you have explained as your dilemma. I too have been wrestling with the concept of personal writing about small matters when our world seems to be falling apart. However, it is important that our stories are out there. Disability advocates talk about the importance of connecting with politicians on a personal level. It is the personal stories of our families that make the biggest impression when services and programs are threatened. And so, please continue to tell yours. Every day the news seems to be awful. One day, it will be about the end of services and programs that the disability community rely on, and on that day, collective agitation will need to be based on individual stories. Maybe yours, maybe mine. Above all, I think this is not the time for silence. Write on! (I will now get off my soapbox. Excuse me, my passion is showing.)
Thanks, Suzanne. No need to apologize for passion… I suppose I should take my own advice.
Thank you for this, Heather. I hope you know you speak for all of us grappling with just this. And quoting SB is also just right, wise in the web for us all feeling these things. You do and can blog here and I hope you’ll keep going about all of it, personal and national. Dawn
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Thank you, a million times for this. I write much more surface stuff than you do, but I have been struggling terribly with even doing that and have internalized it. After mulling this over this weekend, I feel like writing a post about that. I don’t feel much like writing anything anymore so again, thank you.
The personal stories can and do help us connect. They show the people who are not (yet) directly affected just what is being threatened and what the repercussions of the new laws actually are, whether that is a 19 month old detained at the border and separated from her family, crops rotting in fields because people are afraid, people dying because they cannot access medical care or a child being denied an education because she doesn’t fit squarely into the “mainstream” box. The personal is political (to cliche at you), and as humans we relate better to personal stories than statistics or analysis pieces. Ring and write to your senators and congresspeople, your state representatives, and everyone else who can help – and link them back to the post about Fiona’s first day at school, which is still one of the most beautiful things I have read.
Ditto a million times, but I also feel compelled to keep telling stories. Personal stories, political stories — It’s the only way to live.
Although I suspect you are likely to delete this comment, I nonetheless feel compelled to write it so at least you will read it.
First, a few brief statements:
1.) I have appreciated your writing about Fiona for several years, and am impressed by your outlook as a parent to both your children.
2.) My family of origin always had an above-average interest in politics, usually right-of-center. In my 20s and 30s my own political beliefs were often left-of center; now, in midlife, I would describe them as a purple, red, and blue tartan, colored according to particular issues.
3.) I have not voted for an “R” or “D” presidential candidate since my first presidential election.
20 years ago during the Clinton administration, I began stating that the only real difference between “Rs” and “Ds” is this: “R” politicians usually act primarily out of self/corporate interests, but are overt about it; when they are going to (allegorically) stab a person or population in the chest, they will say this directly. “D” politicians also act primarily out of self/corporate interests, yet are covert; they tend to smile and shake hands with a person or population while backstabbing the same person or population with the opposite hand. Also, when a “D” president is in the White House, too many leflt-of-center supporters enter an activist slumber. . .or worse, apologize for the “D” president’s disastrous legislation, such as the National Defense Authorization Act and the Trans-Pacific Partnership (TPP), which would have been a feudal-inspired disaster for our nation and much of the rest of the world.
DJT is not someone I have ever admired (especially his views regarding women), but because he at least cares about the United States of America enough to stop the TPP, I am willing to give him the benefit of the doubt, if only on certain economic issues. HRC is profoundly corrupt (very likely in ways we do not yet know about) and not only supported the TPP, I suspect she helped draft it during her years as SoS.
DJT may not be your ally, but the profoundly corrupt HRC would have been worse.
Thanks for your time in commenting, AstraFi. May the red, blue, and purple plaid you wear someday become our national tartan– a way to weave all the differences into something resembling unity. Cheers.
I am deeply, deeply touched and connected to your worldview. I don’t think I’ve ever posted a comment to a blogger, or, truly followed a blogger. I am a convert. My daughter has 5p-. It is as if you. Took residence in my heart and put words to all the feelings and thoughts in all the posts I’ve read this far. Thank you. So healing. Sending love.