Heather Kerstetter, 30, began having suicidal ideation during a “really tough” period in her life. The thoughts began to scare her, and one day she looked at her dog and thought, “I need to go get help.”
She went to the only psychiatric emergency room she knew of in Austin, Texas, where she was living at the time.
“The very first thing they said to me was, ‘Oh, well, it’s a good thing you can’t commit suicide anyway, right?’” Kerstetter recalled.
Kerstetter is diagnosed with spinal muscular atrophy type 3, and uses a wheelchair and a personal care assistant, or PCA.
Kerstetter said the doctors assumed that because of her physical disability she didn’t need emergency help for her mental health.
“Just because I’m disabled doesn’t mean that these things aren’t very real to me,” she said.
“I’m telling you I’ll die if you send me home. I don’t think you’re hearing me,” she told the doctors.
After an hour, the hospital sent her home due to the fact that they didn’t have a caretaker at the psychiatric emergency room who could help Kerstetter.
But they also didn’t allow Kerstetter to bring her own personal care assistant.
She credits her dog for getting her through that night.
It took her another 3 weeks to get any help.
“It was incredibly bad,” she said. “I didn’t eat. I didn’t shower. It was a very dark, dark, ugly time.”
Kerstetter isn’t alone in this experience. She uses social media to advocate for policy and began talking about her experience. That’s when others started reaching out telling her their own, similar stories.
“It’s incredibly troubling because if it was just me, and if it was just an isolated incident, I feel like it’s something that I could maybe accept,” she said.
“These hospitals aren’t even considering the needs of the disabled,” Kerstetter added.
Depression and suicidal ideation are
Live On, a disability-led web-based movement, is trying to reach out to people with disabilities and tackle that misconception by showing that people with disabilities can lead happy, fulfilling lives. Using #LiveOn people connect on social media and share their stories.
Lawyer and activist Dynah Haubert shared her story after being diagnosed with Friedreich’s ataxia 14 years ago on the movement’s YouTube page.
“Even though 14 years ago I was really scared,” she said. “Today, I love my life.”
She goes on to talk about being a lawyer, speaking at the 2016 Democratic National Convention, and being a cat mom.
“I hope that you realize that you will have that too,” she said. “Just because you may have had an injury or been diagnosed with a disability, that is not the end of your life as you know it.”
“Please live on,” Haubert adds. “Because we need you too.”
Like Kerstetter, other people with disabilities often struggle getting mental health help.
Ian Watlington, senior disability advocacy specialist at National Disability Rights Network, has spoken to doctors about starting to automatically screen people with disabilities for depression at certain points in their lives to make sure they get the treatment they need early on.
“It is an epidemic,” Watlington said. “It is hard to explain to some of my non-disabled peers that once that isolation kicks in, it’s really hard to climb out.”
Sometimes the accessibility issues start even before getting inside the doctor’s office.
Watlington said transportation options are often limited and there can be problems with older buildings only having stairs or doors that aren’t wide enough.
He said the Americans with Disabilities Act, passed in 1990, has helped, but it’s far from where it needs to be.
“This is a quality of life issue,” Watlington said. “This is about people’s most fundamental rights.”
Lisa Iezzoni, MD, professor of medicine at Harvard Medical School, said many of the obstacles doctors might have serving people with disabilities already have solutions — they just need to be available.
For example, Iezzoni said, for someone who has limited or no upper body mobility, pressing a nurses call button might not be an option. Instead, there are alternatives, like a sip and puff device that allows people to call nurses using their lips.
“But that needs to be set up perfectly,” she said. “A lot of places just are not that familiar with doing that.”
For Kerstetter, she would’ve been able to get the accessibility help she needed through a tech had she been admitted in the hospital wing of the building. On the other side, at the psychiatric department, this wasn’t an option, she said.
“Psychiatric hospitals have plenty of nurses who give out meds,” she said. “But those nurses aren’t equipped and aren’t trained and aren’t paid to do the job of what a tech does. And psych hospitals don’t have that.”
In the long term, Watlington hopes there’s an incentive — like help on student loans or a greater reimbursement — for doctors who study more on people with disabilities or go into certain specialties. He thinks this will allow people with disabilities to have more options, and help tackle some of misconceptions doctors often have.
Today, Kerstetter has gotten the help she needs and is about to graduate from Temple University in Philadelphia, Pennsylvania, with her masters in social work. She hopes sharing her story will get hospitals to really think about the people they’re serving.
“It’s not just people who are able bodied,” she said. “It can happen to anybody at any time.”