Beth's story: She says being a 'non-speaker' shouldn't mean losing her right to decide for herself
Many of us take the decisions we make for ourselves everyday – from where we live and work to who we vote for or marry – for granted. But for an unknown number of people across the country, those rights were legally taken away.
Stories of conservatorship and legal guardianship for “pop princess” Britney Spears and football star Michael Oher have gripped the nation. Many other stories have gone largely untold.
A 'non-speaker' finds her voice
Mesa resident Beth Papp is like many other 22-year-olds. She’s opinionated, funny and a huge fan of Taylor Swift. She loves watching shows like "Survivor" and trips to Target.
Papp refers to herself as a "non-speaker."
“I want everyone to know I’m in here!” Papp said.
To communicate, Papp uses boards with letters and some symbols to spell out phrases. This one is like a tablet. When Papp indicates a phrase is complete, it’s read out loud.
Sometimes, she uses a board made of plastic or laminated paper, pointing to each letter.
Then her communication partner, Emily Ulan, reads them out.
Ulan has helped Papp learn how to do this over the past year. She also holds the boards up for Papp to access better.
“We have a lot in common,” Ulan said. “It’s crazy because I do this for a living, but she’s my first client. And I consider her more of a friend than a client.”
'It's guardianship, or not.'
Papp’s mom, Becky King, said that like other babies, Papp began saying a few words at around a year old.
“And then at 18 months, it just … stopped,” she recalled.
A checkup soon after that produced an initial diagnosis.
“PDD-NOS,” said King. “Which is Pervasive Development Disorder Not Otherwise Specified. And my understanding is they don’t actually use that anymore because now autism has become a broader spectrum.”
Then at 5 years old, Papp was officially diagnosed with autism. King said that as her daughter grew closer to adulthood, knowing that services would begin to change or even disappear was stressful.
“What are we supposed to do next?” said King. “She still has no way to reliably communicate.”
So, she began looking into their options.
“Honestly back then there wasn’t a lot of options,” King said. “It’s guardianship, or not.”
King remembers the intense pressure, and scary impressions about what could happen if she didn’t act as Papp’s 18th birthday approached.
“Everyone including the doctors said ‘Well of course, it’s gotta be a full guardianship. Like, clearly she can’t possibly take care of herself or have an opinion about things. So this is the way you guys should do it,’” King recounted. “So we just kind of did it that way.”
“It is unfortunately really common that parents of young adults with– especially with intellectual developmental disabilities are told by schools, by doctors, by everyone around them, that guardianship is something they should seek as a matter of course,” said Zoe Brennan-Krohn, an attorney with the ACLU’s Disability Rights Program.
According to Brennan-Krohn that advice isn’t just incorrect, but harmful.
“There are a lot of alternative ways that people, young adults, adults with disabilities, can get support and help without losing all of their rights,” Brennan-Krohn said. “Guardianship is very hard to undo and is very often permanent.”
A new option: Supported decision making
“Guardianship at its core means the court is removing someone’s right to act for themself,” said Morgan Whitlatch, the director of Supported Decision Making Initiatives at the Center for Public Representation in Washington, D.C. “It’s been called a kind of civil death, a non-personhood.”
You might be thinking: ‘I’ve heard of that! It’s like what Britney Spears went through, or what Michael Oher is petitioning for release from.’
“In some states they might call a decision-making authority a conservatorship,” said Meagham Kramer, an attorney who works with the Arizona Disability Law Center. “In Arizona, conservatorship really has to do more with money and guardianship has to do more with general decision-making.”
In June, supported decision making was signed into Arizona law as an alternative to guardianship. Whitlatch says it’s something everyone uses, regardless of their disability status or age.
“Every day we all use the advice and we get advice from people we trust,” said Whitlatch. “We have people help us weigh the pros and cons.”
Whitlatch added that supported decision making could be argued for as an accommodation under the Americans with Disabilities Act.
Kramer said that while that’s true, having supported decision making specifically signed into law bolsters chances of properly implementing it.
“We’ve now passed the thing, and we need everyone to understand the thing so it’s more than just a piece of paper,” Kramer said, “[so] it actually allows people to use these supported decision making agreements to make decisions in their lives.”
'I want to be my own guardian.'
King said now that Papp can communicate, it’s like she’s finally been able to get to know her daughter. And Papp said that even though she wants to walk back her guardianship, the two remain close.
“Spending time with her is my fav,” Papp said. “She gets me.”
But Papp’s communication method isn’t recognized by the court system, King said.
Some consider it controversial due to concerns surrounding authorship – or who’s crafting and influencing the messages.
But one message is clear: “I want to be my own guardian. I want to make decisions for myself,” Papp said.
Whitlatch said this isn’t uncommon for people like Papp. There’s a wide range of communication methods and experiences. But according to Whitlatch, for the most part “people who don't speak to communicate or have other mechanisms for communication are those that are probably most impacted by guardianship and are less likely to have their "voice" heard in court.”
A protected person’s condition and circumstances can change. But no matter what, the evidence for whether the law considers someone ‘incapacitated’ has to be ‘clear and convincing.’
“Frequently, there is a tendency by society to infantilize people with developmental disabilities, to assume that their capacity or their abilities are somehow static,” Whitlatch said, “that they won’t change over time. And that’s not accurate.”
Guardianship courts fall short on accessibility
Brennan-Krohn said it’s important to reconsider the ways we consider and interact with people with disabilities at all levels. It’s about “being aware of where this very deep-seated sense of paternalism crops up, and how we can try to challenge that,” she said.
Which Brennan-Krohn said means treating people with disabilities as adults, with their own preferences and wishes.
“It is striking and troubling that the court systems that you go through to get into a guardianship or to get out of a guardianship are very, very inaccessible to people with disabilities,” said Brennan-Krohn.
The ADA requires courts to make reasonable accommodations for people but, Brennan-Krohn said, “it’s very rare that courts slow that process down in a way that can make it actually accessible to someone with a disability.”
Kramer said that in Arizona courts, an ADA coordinator works to ensure accommodation requests are met.
“Often a big part of the labor in getting an accommodation granted is educating the people who you need an accommodation from or the system or entity that you need an accommodation from about your disability,” said Kramer.
Which includes accommodations for how someone communicates. But according to Kramer, sometimes logistics – like not enough certified interpreters or scheduling issues – get in the way.
In Papp’s case: Her communication method is so new that there’s little research on it.
King compares it to driving a car: Starting off with an instructor to give pointers, help you focus and learn, until you’re ready to hit the road on your own.
'Music is my voice'
With the lengthy, uphill legal battle she’s facing, Papp’s taking a breather.
“It’s an incredibly intense experience for a completely verbal, non-autistic person,” King said. “But she said that she was not up to a day-long hearing. And her direct quote to me was: ‘I didn’t realize my spelling would be on trial. … I can’t do this right now.’”
But Papp isn’t giving up.
“I’m trying to open the doors that were closed for me!” said Papp. “Ever since I started spelling this has been my goal!”
To express her feelings, Papp wrote a song.
“I had a dream where I was heard, where people listened to my words” the lyrics read. “Hear me, listen to my voice. I am here inside.”
The song closes out with the lines: “I have no more to give. I have tried and tried. And now, it’s your turn.”
Papp said it's a direct message, to those who have been in her life "but also the world!"
“Music is my voice,” she said. “It’s how I’ve always communicated, even before I started spelling.”
Papp said she wants to advocate for other non-speakers, too.
“I want people to presume competence in everyone,” said Papp.
Papp said she hopes change will come with time.
“OMG,” she said, “I hope it’s a totally different conversation where we are not questioning validity. Instead, we incorporate non-speakers into any decision making regarding us.”
Despite legal difficulties, her vision for the future remains.
“Having the chance to make my own decisions about life is the dream,” Papp said. “It is as simple as deciding where I want to live and how I want to spend my time.”
But outside of all that, Papp is just focused on "feeling 22," as her favorite artist might say.