Sometimes I feel sad that I don’t make any money.

sourdough bread

I’m doing something different today: I just opened up my laptop and wrote what was on my mind, and am publishing it with minimal editing. Even though I recently said I prefer works that are heavily edited. Hey, it’s my blog, I can break my own rules. Sometimes it feels good to just share my feelings, knowing that some of you will be able to relate. I’m not asking for sympathy or advice or — heaven forbid — money. I just felt like being honest about my feelings.

This morning I woke up sad that I don’t make any money.

It doesn’t happen often. I understand how I got here, and it’s largely by choice. I chose to get a degree in the humanities, knowing full well that it wouldn’t make me marketable. I chose to stay home with my kids and to educate them myself. I chose to nurture skills that aren’t traditionally profitable: cooking, homemaking, writing, painting, fiber arts. I recently added to my Instagram profile description — with a tiny hint of pride — “Maker of zero dollars.”

In fact, I’ve spent most of my adult life actively resisting a capitalist-centered life, favouring self-sufficiency and time with family over earning an income. I would rather learn to DIY everything than work at a job to pay for those same things. “Our home is a unit of production, not consumption!” my husband and I routinely remind ourselves.

And for the most part, I’m happy with my life choices. I believe that my work is meaningful and important. I don’t feel especially deprived most of the time: on my husband’s small income, we can afford to cover all our basic needs, plus a little extra to cover my hobbies (i.e. blogging, painting and knitting), the occasional dinner out, and clothes that I feel good in.

So it’s not that I wish I had more money — not really. I just sometimes crave the validation that an income would provide.

Sometimes I long for the knowledge that someone out there values my labour enough to want to give me money for it. Possibly even — and this is totally wild — a living wage. Like, I can’t even fathom the thought of someone wanting to give me enough money that we were officially living above the poverty line. How luxurious that seems!

Can you imagine walking around, knowing that your skills, time, and effort are worth actual money? Like, that your labour is so coveted that an employer or a client would be willing to part with actual cash in exchange for it? Man. What a dream. I can hardly even picture it. And I know some people get to experience that feeling, and sometimes I feel just a little bit resentful.

At my last three jobs, I was paid minimum wage, and even then I felt like a burden on my employers. Like I was barely worth the amount of money they were dishing out. Like they’d replace me in a heartbeat if they could just find someone else willing to drive out to their remote location and do the work.

I have been working SO HARD my entire life. I worked so hard to get straight A’s in high school while working on weekends to support my family. I worked so hard to get straight A’s in university while paying for my own tuition plus room and board. I worked so hard at my first minimum-wage jobs. And I have worked harder than ever, around the clock, as a mother. I don’t feel like I’ve had adequate leisure time since I was in elementary school.

And sometimes I just can’t believe that all this hard work has not resulted in any kind of capital. I am 33 years old with a master’s degree and I can’t even imagine what it must feel like to make enough money to pay for my own root canal.

I bet a lot of you can relate, especially if you are a millennial mother or an artist. It is hard to find someone willing to pay us for our work. We are expected to provide so much of our labour for free.

I’m not even sure I want any other life. But in a capitalist society, where our value comes from how much we earn and spend, sometimes it just feels sucky to not make any money.

Related: a few years ago I wrote about post entitled, “I Am Rich,” about how my family is rich in other resources.

I Think I Want to be a Disability Advocate (But I Have a Lot of Work to Do)

josh-appel-423804-unsplashPhoto by Josh Appel on Unsplash

(Trigger warning: I express some really ableist shit early on. It embodies previous attitudes that I’m working to dismantle.)

As longtime readers know, I don’t get pregnant easily. So when we were ready to start having kids, I had months (and months and months) to think about what I did and didn’t want in life.

I begged God to give me children. But I always had one caveat: But please don’t give me a disabled child. If I’m going to get a disabled child, I’d rather just stay childless. I was thinking of autism in particular, because my husband has autistic relatives; but I objected to any really serious disability.

I didn’t fully realize just how horrifically ableist I was.

My first child was born 29 months later, perfectly healthy. I was able to be the hippie mom I’d dreamed of being: I breastfed, I co-slept, I baby-wore. Motherhood was everything I hoped it would be and more.

It took another 19 months of trying to get pregnant with my second. My prayer was the same throughout: Just let me have another healthy and normal child.

As you also know, things did not go as planned the second time around.

Not only was my second child quickly diagnosed with a life-threatening disease that had him hospitalized for most of his first year, but he showed signs early on of having developmental disabilities.

He was late to hold up his head. Late to smile. Very late to roll over. Very very late to sit up on his own.

Not only was I in constant anxiety about his health in his first year, I was in agony over the thought of having to mother a disabled child.

I hoped and prayed that he would eventually catch up with his peers. Maybe it was just the extended hospitalization and isolation that was holding him back. I researched and hoped and prayed that we could find a treatment. Maybe with the right diet and therapies, we could fix him.

At the very least, I hoped that his disabilities would turn out to be “mild” — maybe he’d learn things a little slower than his peers, but he’d basically be able to live a “normal” life — he’d still be able to make same-aged friends, take swimming lessons, learn to ride a bike, etc.

But as he got older, his delays only became more and more pronounced. He slipped further and further and further behind his peers.

The day he turned three, I wept. We didn’t even throw him a birthday party. The truth was now completely undeniable. At three years old he was still nowhere near walking; he showed no evidence of understanding speech (much less being able to speak); and he still relied primarily on infant formula for nourishment.

He was never going to be “normal.”

The thing I had most dreaded had become my reality.

I knew even then that my thoughts and feelings were horrible. I vaguely understood that my attitude betrayed some very deep and hideous ableism. I didn’t value a disabled child the same way I valued an abled child.

I knew I had a lot of work to do to become the mother that my son deserved.

But that shit is hard, and I was so tired. I had already lived through the trial of keeping him alive through SCID. Now I had to begin a whole new journey of learning how to parent a disabled child?

I felt like I just couldn’t get a break.

Again: I did not realize how incredibly ableist I was.

:::

I had always resisted the idea of being a disability advocate.

I realize that it took an incredible amount of privilege and entitlement to be able to avoid it. Disabled people obviously don’t have that luxury. I just didn’t care enough.

Disability advocacy just seemed too . . . depressing. And . . . unglamourous.

Racial justice and poverty advocacy at least seemed to have a bit of hipster trendyness to it. But anything having to do with disability seemed like an unequivocal bummer.

But around the time that my son turned three and I spent his birthday sobbing, I realized that I was going to have to come to terms with a few things. Now that disability was obviously an unavoidable part of my life, I knew I needed to change some things.

I needed to change myself.

From the get-go, I knew two things for certain:

  • I knew I needed to start by listening to actual disabled people. I needed to better understand their experiences, to learn how to respectfully talk about disability, etc.
  • If I did talk publicly about disability, I did not want to be another beleaguered “disability mom,” adding to the noise.

Too much of what I was coming across online from “disability moms” (most often “autism moms”) I instinctively KNEW was harmful. I knew this because when I read it, I felt nothing but fear and horror and dread. Oh shit, is that my future? was my emotional response.

No. These were not the emotions I wanted to elicit when talking about my son.

If I was going to write about disabilities, it was not going to be about how difficult and stressful it is to parent a disabled child. I knew instinctively that this only further stigmatized disability, perpetuating fear among abled folks and self-hatred among disabled folks.

We need to center disabled people, not their caregivers.

Yes, it can be challenging to care for a disabled child; but ultimately the caregivers still have levels of privilege that their children do not.

“Disability moms” are not the vulnerable ones. Disabled folks are. Their voices are the ones that matter, not ours.

Writing about disability will remain tricky for me because I am a caregiver, speaking from a place of unrecognized privilege.

I’m scared of making things worse by saying the wrong things. Yet I do not want to remain silent about something that is increasingly important to me.

I cannot pretend to be a victim. I must not act like I’m marginalized because I have a disabled child.

I feel compelled to share my journey as I work towards being less ableist, but I worry that I will do it poorly and do more damage.

I am going to do my best.

So far, I have taken the tiniest little step forward by trying to fill my social media feeds with the voices of disabled writers. (I am trying to do the same with people of colour, LGBTQ+ folks, etc). I am starting to learn.

As I move forward, I want to get a few things out of the way.

To the disabled community, I want to say: I am SO SORRY for the ways I’ve failed to be an ally, for the ways I’ve perpetuated ableism, and I want to work towards anti-ableism. I may need correction at times. I know I will still make mistakes. I will do my best to learn from you.

To my dear, sweet Felix, who may never be able to understand any of this in words: I am SO SORRY I was so wrong about you. I was so wrong to fear having you in my life. You are an incredible blessing to me and I hope I never stop learning from you.

felix happy

A Very Quick Thanks

morvanic-lee-355170-unsplashPhoto by Morvanic Lee on Unsplash

Dearest readers:

Wow. I was stunned by the encouragement I got after my last post. You really showed up to let me know you’re still here!

When I wrote that post, I honestly thought there weren’t many people out there still reading, who would really notice or care if I quit. Believe it or not, the average post takes me about four hours to complete (between drafting, writing, editing, formatting photos, etc), and I worried I was wasting my time.

Since the comments sections of blogs don’t generally see much action these days, and Facebook doesn’t want anyone to see what I share unless I give them *the cash money,* I often felt like I was writing into the void.

I SO SO appreciate all of you who spoke up to let me know you still care! I got so many surprising words of encouragement in the comments section of the post, on Facebook, and via email. I started out trying to respond to each comment individually but soon became overwhelmed. So I thought I’d send out one big, general THANK YOU. I read every comment and treasured every one.

I have a couple of hard posts in the works right now, and your encouragement gave me the burst of energy I needed to keep moving forward.

Thanks, friends. I guess I’ll keep posting here, even if it’s only every couple of months. I am so incredibly grateful for this wonderful online community. You people are the absolute best.