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

Related Posts Plugin for WordPress, Blogger...