From Isolation to Empowerment: A Nightmare Hospital Stay That Led to Change


As the pandemic raged across America in April 2020, Christine Getman found herself in the last place any person without COVID-19 wanted to be: trapped and alone on a hospital floor that was dedicated to treating people sick with the novel coronavirus. Dreading just that outcome, Getman had done everything in her power to avoid visiting the emergency room, but when an infection related to treatment for her spinal muscular atrophy simply wouldn’t go away, she had no other choice.

While you might think a hospital would take extra precautions to protect a power wheelchair user who relies on a full-time caregiver and has a trach, Getman’s experience suggests otherwise. Despite needing assistance with most daily activities, including moving her hand to her trach to help her talk, her pleas for access to her PCA were denied. She asked if the hospital would assign a staff member to work with her one-on-one and even offered to have her PCA stay confined in her room — all to no avail.

In the end, Getman found herself isolated in her room in bed, unable to access her phone, relying on nurses and staff who were constantly mingling with COVID-infected patients. “When you can’t hit the call button, you can’t feed yourself and you can’t use your phone, the hospital isn’t a safe place,” she says. Getman swore to herself that if she survived her hospital stay, she wouldn’t let anyone else live the same nightmare.

A Feisty Girl

Getman has never been one to quietly suffer injustices. Thanks in part to living with SMA, she learned the value of speaking up for herself at an early age. One of her first childhood medical memories is lying almost nude on a table in front of a bunch of people. “It was like I was just a specimen. I was hospitalized and people were not listening to me. I had to raise hell to force them to listen to me,” she says. “That was one of the turning points where I learned the effectiveness of being feisty.”

At an early age, she had to make serious life decisions that other children her age didn’t have to consider. “Doctors were always reminding me I wasn’t supposed to be alive,” she says. “That definitely affected my decision-making and my planning in my early adult life. I had to ask myself, ‘Do I want to get into this eight-year program? Or will I even make it to the end of that? Those are twisted thoughts to have.”

Between negotiating with doctors in her tween years, standing up to school officials in her teens, and confronting other people’s opinions on how she should live her adult life, Getman developed a self-assured style that is part humor, part bravado and part targeted anger.

“I grew up very fast,” she says. “I was able to converse with adults by the time I was 12. And everyone said, ‘Oh wow, you’re so mature.’ It’s like, you have no other choice. You have to.”

“She’s got this fierce punk edge, but in this really approachable way,” says longtime friend Nickole Cheron. “She’s incredibly charismatic, and people feel really comfortable and drawn to her … it’s a unique blend.”

That blend has helped Getman, 33, lead a busy life outside of Portland, Oregon, with her fiancé, Scottie Foertmeyer, three dogs, four cats, three bearded dragon lizards and a python. As the executive director of the national nonprofit organization Magic Wheelchair, she helps children with physical disabilities live out their fantasies by creating epic costumes they can enjoy from their wheelchairs (see below). The job also allows Getman to embrace her passion for nerd culture, as the organization has become a mainstay at events like Comic-Con.

“I love that I can go from geeking out in a spreadsheet, to nerding out at Comic-Con or a Halloween trade show, all in a day’s work. Never in a million years did I think my career would lead to knowing about the competitive fake blood market or the chemical reactions that happen during prop building, but I’m here for it.”

Getman also sits on the board of the Wheel to Walk Foundation, a nonprofit organization that provides needed medical equipment and therapeutic services, and serves on the Multnomah County Animal Services community advisory committee.

Magic Wheelchair Star Wars group photo, some in costume, at Comic-Con

The Hospital Wouldn’t Listen

The possibility of increasing her strength, improving her movement and stabilizing her breathing convinced Getman to sign up for a clinical trial that led to early access to Spinraza, the first Food and Drug Administration-approved treatment for SMA. She received her first dose via lumbar puncture in Sept. 2017. The results were encouraging. Even though her fourth dose led to bacterial meningitis, a splitting headache and hospitalization, Getman continued forward. “Spinraza was amazing,” she says. “It did something for my energy. I was able to travel as much as I wanted. I definitely felt stronger and more resilient. My breathing and core felt stronger.”

At the beginning of the pandemic, Getman was working to help others with disabilities. “I was focused on connecting Magic Wheelchair’s volunteer builders with PPE creation opportunities, supporting families and just staying healthy,” she says. “I think many of us were traumatized by the critical care triage guidelines and visitor policies that were circulating in the headlines, and the onus was on us to stay out of the hospital because of them.”

Getman in hospital bed alone on a floor of COVID patients.
Alone on a floor of COVID patients, Getman resolved to take action so other disabled people wouldn’t end up in the same situation.

After her 11th Spinraza dose in spring 2020, Getman started feeling lousy. She had a headache. Not just any headache, this headache felt just like the one that resulted from spinal meningitis. With the pandemic swirling outside, she tried to recover at home but quickly ran out of options as her infection worsened. She had to go to the hospital.

The hospital admitted Getman, gave her a COVID test and placed her on a floor with people being treated for the virus, despite the fact that she and her fiancé had been quarantining together for three weeks. Even after her test came back negative, Getman would spend two more days on that floor as doctors and administrators refused to pay any attention to her disability-related needs. Most importantly, the hospital’s COVID no-visitor protocol did not allow Foertmeyer to stay in her room to help her. “People were not listening to me,” she says.

The hospital was oblivious to what was so obvious to Getman: An overwhelmed hospital staff had no way to see to her needs, and without dedicated, round-the-clock assistance she would be in danger of developing more complications, or, God forbid, catching COVID.

Needing help with simple activities of daily living, such as going to the bathroom or getting a drink of water, placed Getman at risk of contracting the virus from nurses and aides who were working directly with people who’d tested positive for COVID. On top of that, given that Getman can only lift one finger on one hand, she needed to have someone familiar with her physical and communications supports to assist her. The hospital made exceptions to the no-visitors policy for children and people with intellectual disabilities, as well as for women giving birth, but the hospital would not make a reasonable modification to the no-visitors policy for Getman.

On Sunday, April 5, Getman updated her status on Facebook, posting a photo of herself lying in a hospital bed and sharing details of her ordeal:

Supposedly not much could be done on the weekend, but tomorrow I’m starting more fights. It’s hard to fight when you’re 75 pounds lying in a hospital bed and dealing with an egotistical attending doctor, but I will.

That’s the short version. I have moments of optimism and lots of losing my mind.

Send all your good vibes (and a little rage for Monday) my way.

A Call To Action

Getman’s Facebook Post galvanized her friends and followers. Cheron, who works as an ADA compliance officer for the city of Portland, was among the many who were outraged.

“My first response was that they were totally violating her rights,” says Cheron. “It was atrocious. And I think what was really hard in general about the pandemic was that it was such a new territory for everyone.”

For Cheron, who also lives with SMA, Getman’s plight resonated even more deeply.

“My biggest concern was just getting someone in there with her, because I think for all of us, we all knew that if we had to go to the hospital, if we got COVID, we weren’t coming back,” she says. “No one was going to take care of us in a hospital the way we would need to survive COVID.”

Getman with with her fiancé, Scottie Foertmeyer and dog.
Getman and Foertmeyer.

After two days on the COVID floor, Getman finally won her transfer to a trauma unit that specialized in working with people with trachs. The next day she got a PICC line, a prerequisite for administering her needed antibiotics at home, and a new doctor who listened to her needs. A day later she finally broke out and returned home. With Foertmeyer administering her antibiotics, Getman recovered from the infection and set her sights on ensuring no one else would have to go through what she did.

“Even while I was in the hospital, I was thinking, ‘I know how to navigate the system, and even I can’t crack these policies,’” she says. “I was imagining folks who haven’t learned that you have to keep fighting — what that could have done to them in the hospital. People don’t always know they have a right to fight these injustices.”

Getman connected with Disability Rights Oregon and shared her story in a front-page story in the Oregonian newspaper and on NPR. She passionately argued that people with disabilities who require assistance to function should have access to their care team if they end up in the hospital, even during a pandemic.

Oregon State Senator Sara Gelser read Getman’s story in the newspaper. As the mother of an adult son with intellectual and developmental disabilities, Gelser had a personal interest in working with health authorities to change visitor policies and clarify crisis care guidelines. When informal conversations made little progress, Gelser took the lead in drafting SB 1606 to legislatively address the problems.

Disability Rights Oregon connected Getman with Gelser, and soon she was testifying in the state capitol on behalf of the bill. DRO and Gelser had collected stories from other people with disabilities across Oregon, but Gelser says Getman’s impact was strong. “It made it real. I think that’s the most important thing that can happen, especially with issues like this that people just don’t want to believe are true,” says Gelser. “Christine’s a natural speaker and advocate and was just incredibly compelling to people.”

Propelled in part by Getman’s testimony, SB 1606 passed the House and the Senate and was signed into law in July 2020. It established that hospitals in Oregon must allow a patient with a disability to designate at least three support persons to assist them while they are in the hospital.

Looking back at her testimony and the emotions she was feeling, Getman sees the value of the anger she felt. “Anger is an energy. You can get things done when you are angry,” she says. “If you listen to my testimony, I was angry when I gave it. And you can hear it.” Channeled properly, Getman’s anger and feistiness led to significant changes that will benefit Oregonians with disabilities in the future.

She’s not stopping, either. This May, the Oregon Health Authority hired Getman to be the accessibility coordinator for the Coronavirus Response and Recovery Unit. Additionally, she has worked with Gelser on vaccine education and issues affecting people with disabilities around the rollout. “We’ve done a lot of public education around disability visibility and cross-disability work, and Christine has been phenomenal in helping to put that forward,” says Gelser.


Support New Mobility

Wait! Before you wander off to other parts of the internet, please consider supporting New Mobility. For more than three decades, New Mobility has published groundbreaking content for active wheelchair users. We share practical advice from wheelchair users across the country, review life-changing technology and demand equity in healthcare, travel and all facets of life. But none of this is cheap, easy or profitable. Your support helps us give wheelchair users the resources to build a fulfilling life.

donate today

2 Comments
Oldest
Newest Most Voted
Inline Feedbacks
View all comments
Victoria Aubry
Victoria Aubry
2 years ago

Christine is an amazing woman!

Sharon Fasnacht
Sharon Fasnacht
2 years ago

I agree – this is amazing! I live in PA and would love to see this become law in every state.