another installment in the “What Do You Do Chronicles?”
when i was unable to work at all outside the home, i remember dreading the “what do you do?” question. it highlighted both how much we relate to and value one another in terms of the employment we hold and the fact that i did not do anything anyone considered work at that point. so how to reply? i’m too ill to work, yet my days are full with emotional, spiritual and physical work of loving my partner and friends, of making meaning with fellow activists, but mostly of coping with chronic pain and illness. but i never managed anything so coherent, usually embarassed I’d mumble something and try to redirect the conversation asap.
just before that time a friend of mine quit her job when she had a baby. she also began to dread the question. she was on the board of a feminist organization and told me about receiving a disapproving reaction from another member of the group upon hearing she was a ‘housewife’. an immigrant from India, she claimed with pride a term considered quaint and out of vogue by most Americans (who, if Facebook can be trusted, prefer creative and corporate-inspired titles such as “CEO of our home” or “domestic engineer/goddess”).
having their labor under or unvalued is something women have experienced for a very, very long time. much of the work traditionally performed by women (childcare, caretaker work, teaching, social work, even nursing) even when performed in the formal sector tends to be poorly compensated, a reflection of how poorly valued it is in our society. and when these responsibilities are performed in the family context it is entirely unpaid and still done disproportionately done by women.
and what about people with disabilities? those who can do compensated work are often extremely underemployed or, historically, exploited for their work under laws that allowed disabled workers to be paid a fraction of minimum wage. and for those who can’t engage in paid work, due to a lack of accessible work opportunities or other limitations, are usually considered to do no work at all. at least for stay-at-home moms (I think there’s a different gender dynamic for dads) there’s some acknowledgement that what they are doing has value, even if it’s generally less valued than paid work. our society likes to pay homage to the value of children and parenting, even though our actions (legislation, policies & practices) do not reflect this (childcare workers rarely make above minimum wage and often receive no benefits, our laws assure no paid maternity leave and only ensure the bare minimum of unpaid leave IF your company is large enough).
however, for women (and men) with disabilities who are unable to work in a traditional workplace, it is often not even acknowledged that we perform any labor at all. the work of caring for one’s own body, needs, is not considered work. it is taken forgranted by the healthy, or something you do if you have extra time. and then there’s the work (requiring skill, experience and patience) of managing formal or informal caretakers, of negotiating the warped systems supposedly set up to help you, of trying to hustle to survive from one day to the next in a society that does not provide you with adequate resources to stay alive, let alone thrive. all this work is rarely acknowledged. even if it’s much harder and often far less rewarding work than what people count as ‘real’ work.
a friend of mine is so ill she’s only able to shower once a week, leave the house twice a month (to go to the doctor and grocery store), and has just enough energy to prepare one meal a day for herself. yet she is forced to spend dozens of hours a month wrangling with insurance companies who are constantly and wrongly denying her coverage, and the welfare system, which is constantly trying to cut-off her small foodstamps allowance. every few months they demand she submit piles of paperwork, proceed to lose the piles she sends them, deny ever having received them (good thing she sends them certified mail), demands she call them *immediately* but then never answer their phones, and terminate her benefits saying she never got in touch with them even after she leaves half a dozen messages and attempts contacting supervisors (whose numbers are impossible to find). then there are weeks of preparing and submitting paperwork and more calls to appeal the decision to cut off her benefits. with depressing predictabililty, this happens several times a year. fun stuff! but make no mistake about it, this is work. real hard work. often demeaning, always demoralizing, and terribly paid.
another chronically ill and autistic friend spends weeks in the ER or in bed due to an excruciatingly painful medical condition. they also have to navigate various medical and social systems while trying to stabilize their health through medications with awful side effects. when they are feeling better, they give of their time and energy more generously than anyone i know. offering to clean the houses of other sick and disabled friends, walk neighborhood children to school after a neighborhood shooting, providing middle-of-the-night company to suicidal neighbors and lifesaving care to other peoples’ pets when they’re out of town. who says that people with disabilities don’t contribute? and yet, this same person gets treated as a ‘freeloader’ and a ‘moocher’ by caseworkers in the welfare system.
all of this work is both un/dervalued and invisibilized in a capitalist society that says that only labor provided to and paid for by for others or garners visibility/fame/social status is valuable. and what about if you’re a stay-at-home mom with a disability? assumptions and judgement abounds! should you have really had children in the first place if you need so much support yourself? or you must have ‘chosen’ to stay home (instead of it being your only option - for the most robustly healthy parenting is hard work - for many with chronic illness, the work of childcare is so exhausting that it takes literally every ounce of what we have) and what a luxury it must be to stay at home (many stay-at-home moms/parents with disabilities live in poverty and struggle to get by AND are still amazing parents.)
and so, when people ask me, I try to think about the question “what do you do?” differently. even though what usually people mean is, “what’s your job?” i stetch my interpretation. it could be interpreted with the annoying literality of a precocious adolescent, “I do the dishes, I do the laundry, I do my hair.” or it could simply mean “how do you spend your day?”
i’ve experimented with different answers - from the ambiguous that doesn’t reveal if what I ‘do’ is paid or unpaid (this seems makes people uncomfortable - similar to how people get uncomfortable when someone’s gender is ambiguous - it seems a sign of how important it is for us to classify each other in these categories). I’ve tried to answer with pride instead of shame (although it always come out sounding a bit defensive to me), “I have health issues so I’m unable to work full-time but I do x, y & z”. I always mean to try evading the question altogether by saying, with a twinkle in my eye, “Oh, I do alll sorts of things!” But then, because I’m me, I get all shy and socially anxious and forget all things charming and clever.
and, despite disliking it so, in those moments of socially-awkward i-dont-know-what-to-say-so-i’m-on-autopilot i sometimes ask people the question myself. sigh.
Are you a stay-at-home mom or a person with a disability who is unable to work in the formal employment sector? What has your experience been around these issues?
love, your local chronically ill, (mostly) stay-at-home mama whose only paid has ever been poorly paid ‘women’s work’ (shoutout to social justice workers!)
(This is the beginning of a series of recipes for my friends who are offering to cook meals for me after the baby comes :). I’ll be focusing on nutrient-dense, iron-rich recipes to help me regain my strength and rebuild any blood lost during delivery.)
During my pregnancy I became anemic. What with my blood volume increasing 50% (!!) and the little one drawing from my iron reserves to build its little body, it’s not really a surprise. I’m sure that being a vegetarian for nearly 2 decades prior (I became an omnivore again developing my food allergies) probably didn’t help either.
My midwives, doula, and doctor have pumped me full of advice about building my blood: iron supplements with vitamin C, eating red meat and liver, cooking in cast iron, drinking nettle and alfalfa infusions, etc. I have to admit, I’m not the biggest fan of red meat and when I looked up its iron content on the charts, it wasn’t as impressive as I’d imagined, given its reputation as the King of Iron. I was delighted, on the other hand, to find out that clams and other shellfish have up to 8 times as much iron as most cuts of red meat (unless you can stomach beef liver, which rivals clams).
I’ve been trying to incorporate more such foods into my diet, but I have to say that my favorite recipes are still vegetarian. Animal sources of iron are more easily absorbed by the body, but perhaps its all those years of romancing vegetables that makes me crave a crunchy kale salad over a juicy hamburger.
This recipe is currently my favorite, iron-rich recipe - chock full of iron-packed superfoods like kale, beets, and pumpkin seeds and melded together with a creamy, tangy, herbacious vinaigrette.
Iron-Rich Kale & Beet Salad with Cilantro Vinagraitte
SALAD 1 Bunch Curly Kale, deveined, washed and torn into bite sized pieces 2-3 beets (any color), roasted* & sliced 1/3 c. toasted pumpkin seeds goat cheese (optional) * To roast beets, cut off greens and scrub. Preheat oven to 350. Place beets in a deep baking dish, add 1/4” water to pan, cover with foil. Bake for 60-90 minutes (less for smaller beets, more for larger) to a knife cuts through the center easily. Let cool before peeling.
DRESSING 1/3 c. whole milk yogurt, sour cream or greek yogurt (dairy free - sub one small avacado) 1/4. c. olive oil 2-3 T. white balsamic vinegar pinch of citric acid (or 1/2 T. lemon juice) 1/2 t. black peppercorns (or 1/4 t ground black pepper) 1 cup, loosely packed, washed and chopped cilantro dash of salt
Dressing: Put all above in blender and puree till smooth. Salad: Toss Kale with some of the dressing. Top with sliced beets, pumpkin seeds and goat cheese. Serve!
One thing I’ve missed since developing multiple food allergies is granola. In my pre-allergy days I was never the biggest fan, but deprivation, it seems, makes the heart grow fonder.
It’s not just granola I miss, it’s any kind of tasty cereal. But because of my multiple food allergies and gluten intolerance, I can’t eat 95% of commercially or restaurant prepared gluten-free products, including cereal. Seriously – try to find a gluten free baked good made without: brown rice flour, oats, chocolate, almonds, citrus, coconut, millet… the list goes on. Good luck! This is why I do most of my own baking. And even though my allergies are unusual and numerous, my recipes can be adapted pretty easily to those with different allergies sensitivities. (One of these days I’ll make a post on the basics of substitutions in gluten-free baking.)
But back to breakfast… the nice thing about cereal is how fast and convenient it is, and when most breads are also off limits, I miss having quick and easy breakfasts. I’ve found about 2 cereals on the market I can eat and neither of them is amazingly tasty on its own. One is Perky’s Crunch Flax Cereal, a crunchy, grape-nuts-esque number made from sorghum flour and flax. I enjoy the satisfying crunch, but it’s flavor is a bit lackluster… although it dresses up reasonably with bit of fruit or honey.
The other day I had the idea of trying to make granola out of it. Most people who avoid wheat can eat gluten-free oats – however I am actually much more allergic to oats than I am to wheat, to which I’m intolerant. (Food allergies are complex, and foods such as oats contain multiple different proteins other than gluten that one can be allergic to.) The results were downright addictive! I ate so much for breakfast I wasn’t hungry until dinner. It’s delicious with milk, yogurt or your favorite substitute and is quite high in both protein and fiber. In other words, a nutritious AND delicious way to start the day :). The recipe is also eminently adaptable and I’ve suggested several variations at the bottom and you can adapt to your allergies/tastes.
Give it a try, I dare you to eat just one bowl :). (OK, maybe you have more self control than I do.) Also, to use the whole box of cereal, just double the recipe.
Now that I’m 5 1/2 months pregnant, I’ve become accustomed to one of the first things people say to me after “congratulations!” which is: “do you know if it’s a boy or a girl?” My sweetie and I decided not to find out the supposed sex of our baby, in part because it doesn’t particularly matter to us, and in part because we know our little one will have a lifetime of well-meaning friends, family and the world pushing highly gendered clothes, toys and expectations onto them… and although it isn’t much, it feels nice to put off the all-blue-everything/all-pink-everything frenzy for a little longer.
When we respond, saying “no, we’re going to let it be a surprise”, people often nod and respond with something like, “Well, as long as it’s healthy.”
As long as it’s healthy, of course - who can argue with that? It’s an innocuous enough and seemingly universally agreed upon sentiment, right? And yet, something about what is implied, what remains unspoken in that statement (what if it isn’t healthy?) makes me uneasy. *
Like any parent, of course I don’t want my child to die, nor do I want it to have to suffer, although of course I know I ultimately have only limited control over both of those things. I have heard that watching one’s child suffer is something one can’t fully imagine until it’s experienced, and this I believe. Yet while having a less than “healthy” child would pose significant challenges and difficulties, I do not dread nor view the prospect of an unhealthy child as tragedy in the way that seems implied by the “as long as it’s healthy” refrain.
This was not always so. In fact, I think that before I became chronically ill, before becoming part of a community where many of the people I love and respect most are disabled or chronically ill, I would have felt the same way. They and we have lives worth living - rich and meaningful and yes, different from those of the non-disabled and healthy. Yes, often full of struggle - but disabled and sick people aren’t the only ones who experience suffering and challenges in life and some of life’s most beautiful treasures and sweetest fruits (insight and wisdom, friendships, passions) may come through engaging with our struggles.
My view also changed when I stopped viewing disability or illness as the source of suffering, but realized that much of the suffering chronically ill and disabled do face is caused by a society that isn’t set up for us, that doesn’t value or include us, that tells us we are burdens to the nondisabled, that tells us we are valuable only in as much as we can be economically productive and ignores the multitude of other ways we contribute to society, that tells us that really the only way to be is to “overcome” our disability (translation: be as much like non-disabled people as possible).
No, before I experienced a chronic illness that left me bedbound and in chronic pain for long periods of time, I probably would have echoed the “as long as it’s healthy” refrain. I would have thought an unhealthy or disabled baby would be an unspeakable tragedy, a nightmare of sorts. Indeed, back then I couldn’t imagine a fate worse than chronic pain, than losing the ability to do some of the activities I loved most. I didn’t have meaningful relationships with people who were severely and chronically ill or disabled, and what I did know came from media representations that painted disability and chronic illness with the brushstrokes of pain and pity. I imagined disability akin to or worse than a death sentence. I would have agreed with the friend who recently bemoaned the tragedy of family friend whose child was born with one arm paralyzed. The whole family was devastated and in a kind of mourning. Their hopes and expectations for a healthy child had been dashed.
This happened shortly before my partner and I had started trying to and became pregnant and in that moment, I suddenly realized how much my outlook had changed. Because my first thought was not, “What a tragedy!” but rather, “How sad that this baby’s birth is met by her family with mourning instead of joy.” And thoughts of, “That’s not a tragedy, she’s just different. Sure, she and her family will need to figure out some adaptations, but she can be fine! Especially if she is surrounded by people who embrace human diversity and disability pride and don’t constantly compare her to two-armed people who they imagine to be superior.” **
I don’t know what this or any child will bring into my life. There are never any guarantees about the kind of child we are going to get. But I do know that my life is about to change profoundly and forever in ways both unimaginably joyful and challenging. And isn’t that what we all sign up for when we embark on the journey of parenthood?
* Please don’t feel bad if you’ve said this to me, in fact I’ve said it countless times to others. I sincerely appreciate that your intentions are good and the sentiment of hoping for the best possible health for any child. I’m just interested in exploring some of the unconscious assumptions behind our well wishes to one another.
** I do have compassion for families facing the unexpected disability of someone they love - whether at birth or in adulthood. But I think if ableism wasn’t so deeply and uncritically embedded in our society, if people with disabilities and their families were embraced, supported and valued for our unique gifts and abilities, such transitions wouldn’t need to be as difficult as they currently are.
Ever have one of those weekend mornings where you’re craving something luscious for breakfast, but too tired for the hassle of anything fancy and too broke/sick/unmotivated to go out for brunch? I have a lot of those mornings :), and this is the perfect recipe for it. These crepes come out tasting like something that you’d get at a sweet little brunch spot or your favorite crepe stand, yet they’re ridiculously easy. The batter takes less than ten minutes and the crepes cook up in just a few more. They’re so good sometimes they don’t even make it from the skillet to the table, but land in my stomach in between :)
Top them with whatever suits your fancy: powdered sugar and lemon, maple syrup, jam, berries, whipped cream, nutella or bananas. One more day and D. could have had fresh strawberries from the garden (they’re not quite ripe). Or go savory with fresh herbs and goat cheese or sauteed mushrooms and gruyere (which sound delicious like a bit too much work for me). I ate most of mine spread with berry jam and fresh bluberries and rolled up like little crepe-style kati rolls. You could easily make this dairy free by subbing non-dairy milk (plus a squeeze of lemon juice) and non-dairy margarine for the butter.
Here’s the deets:
Lazy Morning Gluten Free Crepes serves: 2 people
2 medium or large eggs (not extra large) 1 scant cup buttermilk 1/2 - 3/4 c. gluten free flour blend (I use a combination of 2 parts sorghum to one part tapioca) 1 1/2 t. vanilla (omit for savory crepes) 1 T. sugar (omit for savory crepes) pinch or two of salt 1 T. butter, melted
1. Heat large skillet over medium heat.
2. Beat eggs, buttermilk, vanilla and sugar in large bowl.
3. Whisk in gluten-free flour and salt till all lumps are gone (1/2 c. will make a very thin and incredibly delicate crepe - I prefer 3/4 a cup for a slightly thicker but less fragile crepe). Whisk in melted butter till thoroughly incorporated. Batter will be thinner than pancake batter but thicker than heavy cream.
3. Lightly butter the skillet, then ladel 1/4 cup of batter onto the hot surface. If desired, spread gently with the back of a spoon to make it uniformly round (we don’t bother).
4. Cook till golden brown on one side (1-2 minutes), then flip and cook on the other side till golden spots appear.
5. Serve with whatever deliciousness makes your heart happy:).
[pictured: a stove with a cast iron pan in the background and a cast iron skillet in the foreground. A mottled, golden, crepe of slightly uneven shape lies steaming on the skillet]
[picture of a table set with: a patterned blue and white table cloth, a salad made of greens and sliced radish, a cobalt blue plate piled with canteloupe, and a cheesy gluten-free pizza baked in a cast iron skillet]
Gluten Free Radish-Pesto Pizza
Normally I adore greens. Greens of any variety. I don’t discriminate. Collards and kale, spinach and sorrel, chickweed or chard, I love them all! Mostly straight up - raw in salads or lightly sauteed for a quick meal. Some of my favorite vegetables are those that offer a two in one package of tender greens and succulent roots - turnips, beets, and radishes. But ever since I got pregnant, I’ve had an aversion to greens (among many other foods). In my entire first trimester, in fact, if I choked down a single carrot and a boiled turnip mashed with butter in the same week, it was a small victory.
Luckily my vegetable aversion has eased in month 5, but my previous love of greens is slow in returning. Of course, this would be the spring I have a bumper crop of almost every green you can imagine. This week our refrigerator held: 5 bags (each stuffed to the gills) of collards, 1 of chard, 2 of radish greens, 1 of salad greens, and 1 of spinach - not to mention the braising greens that have gone to flower in the garden and the many other greens yet to be picked. I managed to give away some of the harvest, but was still left with mountains of green. But since my standby of a quick sautee with garlic sounds about as appealing as ice cream made of soggy canned spinach, I’ve had to get creative.
I’ve been meaning to try this recipe for radish greens pesto for sometime and this week I’d been craving a nice slice of gluten-free pizza, so tonight I decided it was time for the two recipes to meet. For the pesto, I used pumpkin seeds and pine nuts, more cheese than the recipe called for (parmesan and a little left over comte), olive oil, garlic, a dash of citric acid (you could use lemon juice) and salt. The final product was alarmingly bitter, so I threw in a tablespoon of basil pesto in hopes of salvaging it.
For the gluten free pizza crust, I’d been eyeing a recipe on King Arthur’s website for a while. It receives rave reviews, although it sounded a bit more bready and foccacia like than a crusty pizza. But I’m flexible with my pizza, I like both thin crisp crusts and more a good, doughy crust. To give it a crustier bottom, cook it in a preheated cast iron pan or skillet. This pizza crust earned rave reviews from D. who remarked that he never misses wheat when eating my gluten free baking, yay! (The second time we made this he went so far as to say it was better than wheat pizza :) As for the pesto, we spread it on thick and heavy (I had a LOT of radish greens) and it mellowed out during baking, resulting in a nutty, mild flavor that D. exclaimed “tastes like a spring morning!” We topped it with a tomato from the farmer’s market and some shredded parmesan and just like old times, I couldn’t get enough greens!
Below are my modifications to each recipe.
Gluten Free Rosemary Pizza Crust (or Foccacia)
(Yield: one 12”-14” pizza crust)
1 1/2 cups gluten free flour mix (I use approx: 1 c. sorghum flour, 2 T garbanzo flour, 1/3 c. tapioca flour, 1-2 T cornmeal*) 2 tablespoons nonfat dry milk powder (if you don’t have this, try substituting 1 cup warmed milk/soymilk for water later in recipe) 1 tablespoon sugar or honey 1 teaspoon baking powder 3/4-1 teaspoon salt 1 teaspoon xanthan gum 1 T. dried rosemary, crumbled 1 3/4 teaspoons instant yeast 1 cup warm water 2 tablespoons olive oil (for dough) 1-2 tablespoons olive oil (for pan)
1) Mix the dry ingredients except yeast in a large mixing bowl and mix thoroughly blended. 2) Pour warm water, olive oil, yeast, and 1/2 cup of the dry mixture in a small bowl. Mix well although a few lumps will remain. Let sit for approximatley 30 minutes. 3) The liquid mixture should now be bubbly. Add the wet mixture to the dry ingredients, and beat on medium speed with an electric mixer for 3-4 minutes. The final mixture will be similar in consistency to a brownie batter. 4) Cover the bowl, and let the dough rise in a warm place for 45 minutes. 5) Preheat the oven to 425°F. 6) If using a cast iron skillet to bake the pizza/foccacia in, put it on the burner on medium heat for several minutes. 7) Drizzle 1-2 tablespoons olive oil onto a baking sheet, 12” round pizza pan or the hot, cast iron skillet/pan. Transfer dough onto baking surface. Get a small bowl of water and wet your fingers thoroughly. Use wet fingers to spread it into a 12” circle. 8)** Bake the crust for about 10 minutes, it will not be fully baked at this point but that’s ok. 9) Remove from the oven and top as desired (we did radish green pesto, sliced tomatoes plus mozzarella & parmesan cheese). Return to the oven and bake an additional 10 to 15 minutes. If you like your cheese bubbly and with those chewy brown patches, turn the oven to broil for the last 2 minutes. 10) Remove from the oven, let cool a few minutes (so as not to burn the roof of your mouth) and devour.
*As with most gluten free baking, you can usually substitute one whole-grain flour for another, and one starch for another, although with varied results. I love sorghum for its nutrition, neutral flavor, and lighter texture. But you could substitute brown rice flour (grittier) or a blend of millet, quinoa, etc. For starches, I find tapioca, corn and potato to be fairly interchangable in recipes.
**This step is optional. The second time we made it I forgot to prebake the crust, and it turned out fabulously :).