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

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Comments

  1. Melissa H-K says:

    God bless you. My goodness, this is so hard, but you are being so honest.

    You’ve read Kelly Mantoan’s stuff, right? thisaintthelyceum.org She has two kids with SMA. She’s quick to say that her kids are all happy, though two of them have significant health issues. Maybe you’d appreciate her stuff.

    • Thank you, Melissa! You know, I’ve seen her name around, but I haven’t really been a committed reader. Thanks for the suggestion — I need to officially follow her work.

  2. Check you Life with Greyson and Parker blog, she also has a facebook page by the same name. Her FB she posts everyday, her blog is polished and every few months or so, but she is an incredible Mom and her boys are amazing. I think in some ways she does what you want to in this post. Her blog has evolved as her life has. She is the best thing EVER! And a healthy voice out there. Also, love your blog!

  3. This is SOO beautiful. It is so good and perfect. You will make mistakes, but life is about the journey and your I mention. I look forward to learning from you because I have learned so much already.

  4. “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.”

    YES, YES, YES. There are so many issues worthy of our attention and support that are decidedly uncool…and they are largely ignored. This is what comes of being a society (and a generation) centered around status and appearance.

    Kathleen, you are so brave. I am so excited about this new journey for you and can’t wait to see what comes of it. I think you will be a tremendous advocate.

  5. Angela Nunn says:

    Love your open-mindedness, willingness to admit you’ve been wrong and are willing to learn. These attitudes will take you so far. Working with adults with additional support needs for a year now and it has challenged so many of my perceptions and opened my eyes so much. It’s been a real privilege. Wishing you every blessing on this exciting journey, Kathleen.

  6. Thanks for your honesty.

  7. Melanie Dauer says:

    Wow, yes! This morning in my quiet time I came across this quote that really hit home: “Today, I surrender. Today, I loosen my grip on what my life should look like and surrender to the life that wants to be lived in and through and as me. Today, I loosen my grip on what I think I want and surrender in service to what the Mystery wants of me.” (Janet Conner) I stopped in my tracks to sit with this one. I’m not a mom, but I was on track to becoming the hippy granola crunchy doctor. I was pretty far along in my doctorate in naturopathic medicine, was an athlete, a real go-getter. Then boom – Lyme disease. My disability is invisible. And I’m learning still, after all these years, to let go of the ableist mentality toward myself. It’s such a big, beautiful, messy and mixed bag. Thank you for sharing so candidly. This is so inspiring and so relatable.

  8. I love seeing your heart about this issue. It’s inspiring that you are so open and willing to learn and grow. I had a thought that maybe you can give yourself more grace in this area. I can only imagine how hard it is to parent a child with a disability. Yes, it is a privilege and yes, the child is the victim in that case, but there is certainly suffering for the parent too. I think it’s okay to say that. Just like I think it’s okay to say that parenting in general is hard. It’s a huge privilege and blessing to have children. It’s also the hardest job ever. Both can be true. But anyway, I love what you’re pursuing here, and I hope I can learn from your journey as well.

  9. Longtime lurker coming here to recommend the blog Confessions of the Cromosomally Enhanced. I’d love to read more from you – even during your blog hiatus, I never stopped checking if you’ve posted anything new :) Kind regards from Slovenia

  10. Yumin Sun says:

    I wish I could give you a giant hug. Love your blog very much. But it aches my heart that my joy of reading meaningful insightful material is based on your suffering. I am a mother of two who are perfectly healthy but I still very often feel exausted and discouraged. I mean I can’t imagine your everyday life and the struggles you are going through. What can I say? I don’t know why it must be like this for you. I can only put my trust in God that HE is good and there is a purpose…. Dear sister, I am cheering for you, you are truely amazing. It’s my honor to witness your journey , to see you fulfil God’s beautiful plan. Thank you soooo much for your honesty. Thank you soooo much for sharing.
    p.s Felix’s smile melts my heart. God bless you and your beautiful family.

  11. sarahkeith valentine says:

    Thank you so much for your honesty. I don’t know you personally but I think of you often.

  12. I would like to recommend a book: “Far From The Tree” by Andrew Soloman. “The children I describe here have horizontal conditions that are alien to their parents. They are deaf, they have Down’s syndrome, autism, schizophrenia or multiple severe disabilities… The time-worn adage says the apple doesn’t fall far from the tree, meaning that a child resembles his or her parents; these children are apples that have fallen elsewhere – some a couple of orchards away, some on the other side of the world. Yet myriad families learn to tolerate, accept and finally celebrate children who are not what they had in mind.”

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