It’s not often but when we do all get together, the women in my family are a close knit crew. Ages ranging from 2 to 65, something we can all enjoy together is a trip to the nail salon once a year.
The day was unfolding well beyond expected. My two-year old had fallen asleep in the car, and on the way in she miraculously stayed asleep in her stroller. All I could think was how I might actually soak my feet for more than 5 minutes before I’d need to herd her wiggly self around the various bottles of polish and women in foam slippers.
I saw her almost immediately. While 6 women in our party claimed our powered massage thrones for the next 30 minutes and dipped our feet into the bubbling LED lighted tubs, my eyes followed her. She was wearing an oversized pink t-shirt, and on it was the logo of a local day program for people with disabilities. Her hair was tousled just in the back, likely a pillow mark. A lanyard hung around her neck. This was different from my own childhood rebellion against femininity, those times I spent carefully trying to achieve what others called a “tom-boy” look. Her appearance instead seemed to be a forgotten chore, a part of her that was taken for granted. My curiosity for her piqued. I wondered what her story was. For the sake of the rest of this post, I’ll call her “Ann.”
My niece bounced from chair to chair as we moved on to the manicure station, the flower design now decorating her right big toe a topic of her own delight. I spotted Ann again, this time a few tables back from where I sat. Beside her, a woman with upswept hair and neat clothes sat getting her nails done. Ann’s knees were turned toward this other woman with her hands resting in her lap. Waiting.
Ah-ha, I see. The blood inside of me began to boil. I looked around at my mom and sister, wondering if they too were seeing what I was seeing. They were looking over at my little one still asleep (still – a miracle!) and chatting about where to grab lunch next.
Carefully, I pressed my palms onto the stroller and walked over with wet nail polish to the drying station. I sat across from Ann – and the woman she was with. The dryer clicked on and the fan blew cold air onto my wet, blue fingernails and toes.
The woman drying her nails looked aloof. Annoyed even. She was occupied with the time, but in a different way than Ann was. It was the look of someone on the clock, waiting for their shift to be over.
“Did you get your nails done?” I broke the silence, asking Ann.
“Yesterday,” she said. I looked down at her nails, their length unruly, brittle and chipped, but sure enough there was polish clumped and smeared onto them.
Ann’s hand lifted from her lap and lovingly, she reached over to sweep the other woman’s bangs away. The woman darted her eyes and stiffened, it was clear she wanted nothing more than to disassociate herself from this disabled woman she came with.
It was too much.
“What agency do you work for?” I asked the other woman in my kindest, most curious voice. I was nervous about tipping my hand, revealing that I knew without asking she was Ann’s caregiver and that she was on the job, but she was none the wiser:
“Care Options,” she said, turning to me with such polite responsiveness that I was taken aback. If she could be so kind to me, she wasn’t just having a bad day.
“Oh, I used to work there,” I responded calmly, though she was hitting a new a nerve. I knew that agency well and had wrestled with them many times in the past.
Engaging this woman had opened some valve and she began to talk for the first time since I had seen them. Ann put her head on the table and listened as we talked momentarily.
As they got up, I looked deeply into Ann’s eyes, “Have a nice weekend,” I said.
In my farewell, I hoped Ann could see I was her ally, hoped her caregiver would realize I was disgusted with the way she treated her, wishing I knew how to be less reliant on innuendos and body language and could just come out and express my thoughts directly.
I had to sit outside. I explained to my mom the scenario that had just unfolded in-parallel to our girls day out, and she looked aghast. She hadn’t seen any of it. Ann’s unkempt appearances as she sat idly by her caregiver who was getting primped on the job were beyond glaring to me.
But even in a salon, where self-care and women bonding are the unmistaken norm, most people didn’t notice. Ann was the invisible outsider.
Why couldn’t they have just gotten their nails done together?
How could anyone feel justified getting paid to treat the person they are supposed to be working for so poorly?
My daughter woke up to the sound of my voice, louder and more clipped than usual.
I wanted to call “Care Options” and report this behavior, make a fuss. I am still friends with one of their “consumers” whom I used to be a caregiver for, and over the years she and her family have come a long way to ensure she was getting proper supports. I asked myself if it was worth it or would it be more harmful to my friend if I made a big ordeal out of it. I hadn’t even gotten their names, so maybe they would write me off anyway.
Plus, I know this agency. I’ve had their training first-hand, I was a recipient of it once. They train staff to be documenters of behaviors and meds, to prioritize order and safety. The rest is passing time until your shift is over. People’s lives become equivalent to hours on a paycheck. I saw this thought pattern more than once when I was their employee.
Was calling to complain really going to change the way they train their caregivers to think?
It’s unusual for an agency to do that, to break mindsets — the way we do at Starfire. That’s one of the reasons I’ve poured myself into the work here for the past 5 years. Our end game is a shift in culture, we don’t stop with just keeping people safe and fed. While it can mean some of that, at Starfire we know it goes way, way beyond the basics of simply keeping people breathing.
What I also don’t mean is that we take on the insurmountable task of “fixing” people to be less disabled, like so many agencies try through behavior plans and “life skills” training. We know that this way of offering support people often turns into a trap, where people with disabilities are cordoned off into the same programs with only other people with disabilities into an endless cycle of isolation and repetition. There they become known for their disability, and their assets are lost.
At Starfire we aren’t paid to control or manage people with disabilities. Our job is to tackle the root-cause at hand that we understand to be a widespread belief system that leaves people with disabilities out and leads to exclusionary or segregated models in our communities.
So you see, it is other’s mindsets that leave people out of ordinary life, not their disability.
So we attend to image in a way that signals to others that this person, who might be seen for their disability at first, is also cared for and valued. We ask that staff and the person they support are doing things together (like getting their nails done), because it models for others what it looks like to include someone with disabilities in a relationship. We try not to be an end for the person we are working with, but rather act as a bridge to more relationships, more opportunities beyond what our paid role can do. So we discover pockets of opportunities where people can contribute in the community.
We do more than just keep people alive. We make space for them to be loved and cherished.
This is what I want every agency and paid support person to want for Ann, but we’re not there yet. Still it burns inside to see it happen, and breaks my heart to tell the story when it does.
What more should I have done? What more could I have done? I’ll continue to ask how I could have done more. Perhaps my bravest step is writing this blog post. Maybe you’ll help by sharing it. I’d love to read your comments.
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