A horrific story of abuse prompts a reporter to tell a deeper story of the challenges facing those with intellectual and physical disabilities
Courtesy photo by Betty Hum
On New Year’s Eve in 2018, news broke that a woman with profound intellectual and physical disabilities — a 29-year-old who could not care for herself in the most basic of ways — had given birth to a full-term baby boy at a long-term care facility in Phoenix.
The story made international headlines. Since it happened in my hometown, and I’ve covered issues around intellectual disability for a long time, I was asked to cover the Hacienda HealthCare story for The Guardian and other outlets.
I did it. To be honest, I really didn’t want to cover Hacienda. I could barely stand to think about it. My daughter, Sophie, has Down syndrome. I figured that by the time she was 15, I would have imagined every possible bad thing that could happen to my younger daughter.
But giving birth to a full-term baby in a long-term care facility, that was a new one. Worse yet, the staff at Hacienda insisted they had no idea the woman was pregnant, even though she was slender and had to be tended to by others in the most intimate ways.
I shook it off and covered the story. I spoke to employees at Hacienda and family members of people who still lived there. I asked the woman’s lawyer to put in an interview request to the family, which was denied. And I was in the room at the state capitol weeks after the birth, on the day a press conference was held to announce a male nurse had been arrested and charged with sexual assault.
After that press conference, the outcries over what had happened and the calls for reform dimmed considerably. The governor created a task force to address issues around abuse and neglect of Arizonans with intellectual and developmental disabilities (IDD), but no one made much progress.
Most of the world turned its attention elsewhere. Something continued to nag at me. Historically, abuse of people with intellectual and physical disabilities (IDD) has been concentrated mainly at facilities like Hacienda, institutions typically populated only by people with IDD and those paid to care for them. But by 2019, fewer than the 150,000 or so Arizonans with IDD lived in institutional settings.
What about the other 149,800 people?
I began developing sources and making public records requests. More than four years since Hacienda, I still have two lawsuits on appeal here in Arizona, but I was finally able to get my hands on 10,000 incident reports documenting all kinds of situations, including charges of abuse and neglect involving Arizonans with IDD. The original Hacienda incident report was included.
The generous support of the USC Center for Health Journalism gave me the guidance and resources needed to analyze those documents. The conclusion: abuse and neglect of people with IDD can happen anywhere: family homes, on the job, at day treatment programs, and in small group home settings designed to maximize the benefits of living in the community at large.
The result was a five-part series, “Unsafe,” including the first-ever interview with the mother of the woman who was raped at Hacienda. The series included an analysis of the data from the incident reports; a case study where a caregiver admitted to abuse but still escaped criminal charges; a story about a sex ed program being piloted by Special Olympics Arizona; and stories from families who can’t get anyone to listen.
I was also lucky enough to have support in the form of an audience engagement fellowship, and permission to experiment. I was skeptical of my mentor’s suggestion to create an advisory committee of experts in the field, but it’s one of the best things I’ve ever done in my 30-plus year career. It gave me great insight and direction.
But one thing was still missing: the voices of people with IDD.
This gets complicated quickly. The woman from Hacienda cannot express herself for a story. Many people with IDD cannot. But just as many can — that’s a lesson I would likely not have learned if it weren’t for my own outspoken daughter.
And it’s complicated in another way. I had already learned through earlier reporting that people with IDD don’t necessarily want to focus on horror stories, their own or others’. Really, who does?
So again, in the spirit of experimentation, I decided to throw a community event for people with IDD. My intention was not to simply share the results of “Unsafe.” That would’ve felt unproductive and possibly cruel.
I thought a lot about why bad things happen so often, and why so many people with IDD — particularly adults — seem really unhappy, or worse. The answer always came back the same: A lack of community. Even though the U.S. Supreme Court did a lot of good in 1999 with the Olmstead decision, which requires that people with IDD live in the community whenever possible, so many people with IDD don’t have meaningful relationships or activities, no matter where they live.
So, we decided to have a conversation about that.
On a Saturday in February, dozens of people from the IDD community — including many who themselves have IDD — gathered at Changing Hands, the independent bookstore in Phoenix, for what can best be described as a variety show. Actors from a local theater troupe performed songs from the musical “Rent,” as a reminder that adults with IDD are just that — adults, with hopes, dreams and desires. Three people with IDD (including my daughter Sophie) told stories on the theme of love. We had a panel discussion with a dozen or so people with IDD, giving them space to express themselves about how we can all be better community builders.
Throughout the event, a slideshow played a part of a project called “My World,” in which we gave two dozen cameras to people with IDD and asked them to photograph their worlds. A local advocate shared one of her projects, a sensory table, again with the theme love. Special Olympics Arizona and a half dozen other organizations handed out materials. And each audience member received a copy of a zine that included an interview with one of the “Rent” performers, and with a trigger warning, results of a recent study about sexual violence against people with IDD in Arizona, as well as information about the “Unsfafe” project and a list of resources.
The event was standing room only. I got positive feedback from advocates, family members, bureaucrats and even an invitation for Sophie and me to speak to the Democrats in one of our legislative districts. But most meaningful was the feedback I received from people with IDD, both audience members and participants.
Christine Armstrong, who has epilepsy and developmental disabilities, texted:
“I wanted to let you know that I’ve gotten so much support after from doing that panel I just wanted to say thank you again if it wasn’t for you wanting me to join in I wouldn’t have gotten more support I appreciate it greatly.”
People wanted to be heard and they were.
By the time the event was over, it really felt like we were just at the beginning. I’m working to figure out next steps. More than anything, I learned so much.
Here are several things I attempted with the goal of making the event and project more accessible, beyond finding a location that was wheelchair friendly:
Try every possible way of reaching people with IDD and those in the IDD community at large. At times it felt like I’d invited each of the 100-plus attendees personally. And it was probably close! But not quite. We pushed this one hard on social media. We aired a story about the lack of housing options for people with IDD on the radio the day before the event, followed by a conversation between one of our hosts and me about the event and project. My advisory committee spread the word. I printed posters and flyers and sent the Eventbrite link to everyone I could think of – more than once. In the end, we had a lot of RSVPs. But most people just showed up.
Include people with IDD in the execution of the project and event, wherever possible. The man who played piano at the event; the illustrator who created art for both “Unsafe” and the event; the designer who put together the zine; and one of the plain language interpreters all identify as having IDD.
Hire ASL interpreters. This seems obvious but wound up being complicated because I needed a total of three interpreters. For a two-hour event, you need two interpreters who can switch off. And I also needed an interpreter for one of the performers, who is deaf. I suggest planning ahead and budgeting. It was not easy to find interpreters and, understandably, they don’t come cheap.
Translate materials into plain language. Not only did we have the zine translated into language designed to be more accessible to people with IDD without dumbing down the content, it was designed so that one version was not seen as the original version. One side says “Formal Language” and the other says “Plain Language.” You flip the zine to access the different versions. Each has equal weight.
Post as much content as possible online. The zine, the slideshow and a video of the entire event will soon have their own landing page, linked to the “Unsafe” project, and will include a trigger warning.
Listen to feedback. As the event wound up, a woman I know from the community approached me. She had enjoyed herself, she said, and so had her son and daughter, teenagers who both have a rare chromosomal difference — they are deaf blind and use wheelchairs. But this mom wanted to know how her kids could have been involved as performers instead of just audience members. She suggested that next time, maybe there could be an element involving movement that would allow them to participate.
Make sure there is a next time. I’m not sure exactly what that will look like, but I’m working on it. And thanks to these fellowships, I now have a lot of amazing people to give me advice.