Why allyship matters

I don't usually get this personal in my newsletters, but this is the very bumpy road to access and care.

Sometime last fall I was giving a guest lecture to a seminary class on disability activism and ministry. The class went around the room asking me familiar questions about my book, accessibility in churches, and scripture. Until they got to an older gentleman. He was a seasoned pastor, and he somehow looked into my soul through that Zoom screen and asked me,

“I want to know: what keeps you going?”

I gulped, tried to fight back tears, and I stumbled through something of an answer. I don’t remember what I said. But I remember how I felt. How I had been feeling most of the fall. And it was weary… Did it show on my face, or did he hear it in my voice?How did he know?

My daughter, Lucia has a progressive genetic disease of the brain that causes medical fragility and seizures and that fall, her public school had put her last on the drop off list on her bus, meaning she was spending over an hour getting home on the bus. It was not only fatiguing her, but it was also inconveniencing and challenging to the nurses trying to provide her after school care. They were having to stay over their shifts to give her the care that she needed. I communicated our concerns and requested a change. It was only when Lucia threw up on the bus that it felt like anyone started to pay attention.

Lucia boarding the bus in our driveway. My photo.

However, the solution the school provided, which was putting Lucia on a private bus that had to leave from the school over 30 minutes after the school day ended (because the bus was tied up elsewhere), was also unsustainable. She was still getting home over an hour after the school day concluded. I kept speaking with numerous officials who seemed sympathetic but nothing changed. One who said she would inquire on our behalf with transportation one week, then responded that she simply had no control over transportation the next week when I followed up with her.

When I called the transportation department directly, mercifully I was met with a person on the other end who took seriously my concerns, talked through a couple things she could try, and followed up the very next day to run her plan by me. It seems there was no good reason why Lucia needed to be last on the drop off list. There were ways to move the routes around that could probably work well for everyone. And eventually the bus situation was solved.

But the problem was that the back and forth, the sense that no one really cared until my child was actually physically harmed, and the fact that even an easy solution had somehow gone unresolved for so long, left me heartbroken, exhausted, and wanting to give up. It also left me with the distinct feeling that I was alone. That no one would really choose to advocate for my child except for me. And that nearly everyone else had settled for something that wasn’t good enough because the settling was good enough for them.

Meanwhile, there was yet another mountain I was working to climb, which was that Lucia’s nurse had voiced concerns about one of her aides, as well. I’d emailed and gotten this strange run around, gaslighting really—oh, she’s really doing her best, it will be fine, they seemed to be saying. But again, no one seemed to acknowledge, let alone address, my concerns.

I’m all I’ve got (I was thinking when that pastor asked), and even if I wanted to, I can’t possibly give up, I thought, as I stared across into the Zoom screen into that man’s kind eyes.

Then, a couple weeks later, there was a call from the school, out of the blue, in the afternoon, with a bunch of high level folks on the line. After assuring me that Lucia was okay, they let me know that a few peers of Lucia’s had observed the aide in question hitting her in the chest in the classroom that day. The girls brought it to the teacher’s attention, and after questioning everyone, the school had made the decision to let the aide go.

I was gobsmacked, of course, and dismayed. Once again, it had taken harm to my child to escalate a concern to the level of doing anything about it. But I was also amazed. These were ten year-old girls, friends of Lucia, who saw something wrong, and did something about it. When no one else would. It shouldn’t have taken vigilance from children to change the situation, but it did.

That evening, I called and texted the mothers of Lucia’s friends. When I heard the story, I knew exactly who these advocates were. One of the mothers talked about hearing her daughter’s concerns. She said something to her mother like, “I don’t like the way Lucia’s aide hits her. It doesn’t look like something medical. I wouldn’t want for someone to hit me like that.”

It was such mixed emotion, to know someone would hit my child, but then to know that her friends, seeing her as their equal, would know in their hearts that something wasn’t right and would find the courage to speak up. What I especially love about Lucia’s friend’s words were that she didn’t approach advocacy for Lucia from the sense that she was helpless or unable to defend herself, rather she approached advocacy from the stance of a friend, noting that Lucia should be treated with dignity, just like everybody else.

Lucia eating lunch at school with her friends. My photo.

My eyes brim with tears every time I think about it, because there is something so powerful about allyship, the type of advocacy you don’t ask of anyone, but they just do, because they love you, because they know what you need, and they won’t hesitate to speak up. Disability justice activist Mia Mingus talks about this as access intimacy, something that truly is beyond words, but it’s like a sigh your body takes when someone gets your access needs in a way that is so felt, so intuitive, that for once, you don’t have to feel so vigilant, so hard to the world, so alone. Even now, just writing about all this, I’m taking these deep breaths, my eyes are welling up, and things are different because of what those girls did.

And then, the day before Thanksgiving, we got some phone calls and letters that caused our hearts to sink again. With Lucia’s health faltering that fall, we’d also somehow scraped together time with one of our nursing companies and her doctors to apply for 24/7 in home private duty nursing. In her young life, we’d never had more than 16 hours per day, 7 days a week. But in the last few years in working with a new agency, they’d applied and helped us secure flex hours, a variance to use those 112 hours however we saw fit throughout the week. And so, with their encouragement, we’d gotten together an application for more nursing hours, which we’d submitted to her Medicaid contracted insurance earlier that fall.

I told people the whole thing felt like being in an abusive relationship. Several times in the last eight years since she’s had nursing, the Medicaid insurance has come after her hours, threatening to cut them, and we’ve had to stop everything we were doing to scrounge up a team and put up a fight. Most cruelly, one of these assaults was during the height of the COVID pandemic. People weren’t using all their nursing hours, precisely because they were trying to keep their medically fragile kids from being exposed to too many personnel, and the insurance companies went after the hours. So applying for extra hours felt like something you just don’t ask for, lest it come back to bite you. We were by doctors that told the insurance company could actually review the case and even reduce the hours if they saw fit. We weren’t sure if we were even doing the right thing, but we felt we had to try.

But the day before the holiday, we found out that our application for 24/7 nursing hours had been rejected. It wasn’t a surprise, really. Even the doctor who helped us apply felt that the request was very unlikely to be accepted. And we were told the day before Thanksgiving that the same doctor had 7 business days to do a peer-to-peer appeal with their insurance doctor. Great timing. Things seemed even more unlikely.

And then on December 4th, I realized I’d missed a call from our insurance case manager. I clicked on the voicemail, expecting her to be requesting a last minute intake visit like she often does and heard her stammering, “I see in the system that the decision against 24/7 nursing has just been overturned? Your doctor did the peer to peer, and the 24/7 coverage has been approved through June 1, 2025.” I was holding Lucia on my lap, but you could have pushed both of us over with a feather. I think I did a laugh and a cry all at once and of course, she startled. “Lucia, you got it,” I whispered to her in a choked up voice. “You got the 24 hour nursing.”

It felt too good to be true. It truly felt like and continues to feel like a miracle, especially in the midst of such weariness and heartache. Even the doctor who advocated for us felt uncertain as to whether she would be able to help us get the hours. But when I think about it now, the miracle doesn’t just feel like the nursing hours, but the fact that without me in the room, without my assistance, someone had stepped up to advocate for my daughter.

This is why I so often say that my love language is advocacy. It’s people calling their senators and representatives, it’s friends speaking up when something doesn’t look right, it’s doctors going out on a limb for something they don’t even know will work, and it’s directors of transportation who really listen, who run things by you, and who change things before they have to get worse. And what happens in these moments is that people who may not even fully understand are trusting disabled people and their families to know just what it is they need. They are refusing to settle, when the world is settling all the time. Instead, they are going out beside and in front of their friends as allies, sparing disabled people and their families from the often disheartening and humiliating work of pleading for the things they simply need to get by.

Lucia, somehow smiling, through a recent hospitalization. My photo.

The wild thing is that since we got those 24/7 nursing hours, things have actually gotten so much worse for Lucia. She’s been hospitalized too many times to count, emergency surgeries, inflammation of her organs, shingles, seizures, near sepsis. But having this security net of the nursing, having this team of people all around us, has truly cushioned the blows.

If I could respond to that man’s so profound and prophetic question today I’d say something like,

“Access cannot just be the work of disabled people or we won’t be around someday. It has to be our collective effort in the world. So you all, if you choose to be our allies, it will be you all, who will keep me and my family going.”