I’ve been learning about a really important movement in the disability community, called “people first.”
It’s a critical idea in self advocacy: I am a person first. I am not a disability first. When you visit the most general people first webpage, you will find the hilarious and brutal tag line: “Label Jars Not People.”
“People first” language makes us rethink how we refer to ourselves and others, and therefore how we perceive and interact with the world. Instead of “I’m OCD,” I would say “I’m a person with OCD” or “I’ve been diagnosed with OCD.” Instead of “He’s bipolar” I would say something like “He’s been diagnosed with a mood disorder.” Looking back, I would not have said “Jesse is dyslexic.” I would have instead said “Jesse has a reading disability” or, perhaps better yet, “Jesse needs some extra supports to help her learn to read.”
“People first” language and thinking challenges us to treat people with dignity; to view their limitations and differences not as definition but as situation; to ask ourselves how we can enable each person to have a rich and fulfilled life regardless of his individual weaknesses and strengths. We stop imposing a label, and we start seeing the whole person first, before the symptom or the disability or the challenge.
I know this movement has stayed front-and-center in my mind lately because I feel that I’ve stopped seeing Jesse as a person first. I mean, of course she’s a person and my beloved daughter. But, thanks to the omnipresence of Therapy, I started seeing her challenges first. Every morning when I woke up, I saw symptoms, strategies, interventions. I pixelated Jesse into a series of behavioral and emotional blips to contend with.
This is not how I should experience my daughter.
So I’ve been struggling to pull myself up to a place that’s more consistent with who I’ve been for most of my life, a place where I see my child as a person, a whole being, who faces a set of challenges that only partially define her experience. I’m trying not to be too hard on myself as I make this transition, because I know that whatever mistakes I’ve made (and will make), I’m acting with love, with passion and compassion, and with big dreams of happiness for my children.
* * * * *
The last couple weeks, after yet another round of sickness and disease in the house — strep, snot, coughs, fevers, stomach aches, allergies, scrapes, cuts, burns, you name it — I’ve been really worn down. When everyone else gets sick, I’m there taking care of things for them. Food is made and delivered, blankets and pillows are arranged and puffed just so. I do extra dishes, make special treats, do more of the cleaning than usual. I check on meds, hydration, caloric intake. I fawn and pamper.
When I’m sick? I’m there taking care of things. Food is made and delivered, still by me. I do as much housework as I can. I take care of my own meds, my own hydration, and my own caloric intake. I take care of myself.
I whine and whine about this — sometimes to myself, sometimes to the wind, sometimes to my family but no one ever listens to me anyway. Why can’t I be spoiled just a little when I’m sick? Why can’t someone fawn on me and pamper me?
A friend brought over her kids today so she could go to the doctor with a family member. Her charming and sweet daughter sat in my kitchen having a snack. I said as gently as I know how, “Your mom sure seems tired and a little down, and I know she’s sick… Maybe you want to help her a little extra the next couple days. Like, spoil her a little.”
This delightful child looked at me blankly and answered in an innocent monotone. “Why?”
Yes, dear reader, I was polite. I bit my tongue. Neither did I laugh, which was hard. But here’s what I wanted to scream, not at this little girl in particular, but at the world, at my own kids, who take for granted how much they’ve disappeared me behind this label:
Before I gave birth to you, I was a human being. A real person.
I am a person first. I am not just “mom.” Rather, I am a person with children.
I am more than an allocated resource, here to meet your needs. I am more than your personal servant and assistant.
I am a person blessed with children, and also I am a person afflicted with children. I am a person surrounded by spawn who suck their every need out of me, and it never occurs to them to give anything practical back in return. (Not yet, anyway.) I am a person who has dreams, hopes, wishes, all of which have been shunted to the side for quite a few years now as I meet the needs of these other little people. I am a person who needs to sleep more, and I could use some supports in place to make that happen, because my minions don’t get it. I am a person who needs more exercise and needs to eat better; but who has time for that with high-needs kids running around? I am a person who wants to study and learn and read more than I do, and I need some accommodations to make that happen, given my current condition. (The condition is called “MOM.”)
I am a person first, just like you, my children. I’m just waiting for you to grow up a little, to be old enough and wise enough to see me through the mask of your needs.
So I’m thinking maybe I have a pretty good idea how Jesse feels behind the label. Maybe I’ll peel it off her and stick it on a jar somewhere.