Our Community Support team rallied around a person at wit’s end – literally saving her life
Meet Sarah. She is well-educated with a successful career and, before the onset of her disability, an upper-middle-class income. Also, she is a longtime activist around and within the international and national disability communities.
Sarah’s careers included leading operations at a Midwest homeless shelter, working in government and finance on the East Coast and producing part of a global sports event ceremony that beamed disability awareness to two billion viewers worldwide. Then, she was diagnosed with multiple sclerosis. The disease advanced rapidly, and she started using a wheelchair for mobility.
“The MS came on so suddenly. I went from not having any other signs to two injurious falls within six months. Two months later I was diagnosed with MS, eventually paraplegia,” says Sarah.
Now a wheelchair user saddled with major disability expenses, Sarah could no longer afford to rent or own her own place. She acknowledged these circumstances drove her to the precipice: Without United Spinal Association’s intervention, she planned to travel to Vermont to become the first out-of-state test of its assisted suicide law.
Editor’s Note: Sarah’s narrative is compelling. For many reasons, it is important to share it and protect her anonymity, so her name has been changed. A few details and locations are vague to protect her identity.
Nowhere to Go
Post-diagnosis, Sarah endured substandard, inaccessible housing in both rentals and home ownership. She exhausted most of her finances in pursuit of advanced medical care, and moved out of state, partly because she had survived domestic violence.
It was a challenging time for a leader who had been a problem solver for others for decades. She had been involved with lawsuit settlements to greatly improve sidewalks for wheelchair access and now had trouble meeting her own basic needs. She couldn’t find accessible, affordable housing anywhere in the country.
“I dealt with these challenges by reaching deep inside to the unlit corners and turning it all over to God. Still, it — both MS and ableism — hit me like a rock,” said Sarah. She struggled with post-traumatic stress syndrome, choosing only to discuss it with treating medical professionals. Even so, she said, “I went through some awful marginalization.”
“Society makes it very clear we don’t have a space for people with disabilities. We don’t really have a safety net in these United States of prosperity of America,” says Sarah, taking a jab at a wealthy nation that fails at building enough affordable, move-in ready accessible housing.
Finding the Will to Fight
The resourceful, resilient Sarah, who had advocated for others for a lifetime, was grieving deeply over the circumstances that put her into logistical, financial homelessness. She had read United Spinal President & CEO Vincenzo Piscopo’s letter against assisted suicide earlier in the year and shared it with people and foundations but was left with her own looming reality of having no place to go.
“Many of our members are vulnerable to suicide and can be victimized by Physician-Assisted Suicide statutes, especially while they are adjusting to living with paralysis,” wrote Enzo in that letter. “They need long-term services and supports to live effectively in the community, and assistance in dealing with depression that often causes suicidal ideation at the onset of a traumatic disability.”
“I, too, am against assisted suicide,’ Sarah emphatically said. “Like in Canada, where they are now encouraging people with disabilities, depression, or financial deprivation to kill themselves. Not because of constant pain with no relief. But because they are out of money, out of accessible housing, out of medical care and resources.”
Like she was when she thought her only choice was to pursue that final option.
“I researched accompanied dying, and I was aware Vermont had passed a law to include even out-of-state residents, the first in the nation,” said Sarah. “I had rationalized I could take my time, drive to Vermont, still have enough to get a little apartment and start identifying doctors open to the idea (of facilitating her own assisted suicide).”
The Team with a Heart
Enter United Spinal’s Community Support and Advocacy programs. This tight-knit crew is renowned for helping wheelchair users with a host of issues, including housing, medical care, rehabilitation, attendant care, applications for benefits and transportation. They also help people cope with the onset of brain and spinal cord injury or disease and numerous other disability-related requests.
The six-member team is known for having a heart. They make personal connections, taking calls long past standard business hours, blending expertise with the human factor.
Sarah and our Community Support team met each other at an unlikely but ultimately timely place: A recent United Spinal webinar on Assisted Suicide. United Spinal Association, along with other disability organizations and individuals with disabilities, filed a complaint against the State of California in the U.S. District Court for the Central District of California on April 26, 2023.
Deeply moved by the presentations, Sarah spoke against assisted suicide while praising United Spinal’s team for saving lives, one at a time. Many lives.
It was not hyperbole.
Sarah’s lifetime of advocacy familiarized her with United Spinal, especially its Community Support group, formerly the Resource Center. After the webinar, she reached out and soon had a whole team behind her: Matt Castelluccio, Vice President of Community Support; Lindsey Elliott, Senior Director of Community and Peer Support; Stephen Lieberman, Director, Advocacy & Policy; and Jane Wierbicky, Nurse Information Specialist.
“Some organizations meant to help people are short-staffed, so the person seeking assistance gets passed from one resource to another. Or they reach voicemail, not a person,” says Jane. “What sets us apart is that we are a small team, but we try to get people on the phone to hear them out. We are not miracle workers but doing it with passion and human feeling is what people get from United Spinal.”
You Are Safe in Our Hands
Working with an acclaimed disability rights and inclusion advocate who now had a disability and was running out of options resonated with Matt.
“Our team works hard to break down barriers. But we also have an empathetic ear. I gave Sarah my cell number. She called at 9 p.m. sometimes. I don’t want someone to feel that isolation and disconnection that I felt post-injury,” says Matt, a C6 quadriplegic.
Steve, who has been instrumental in expanding United Spinal’s grassroots network of member-advocates in virtually every Congressional district, knew Sarah from her days as a fierce advocate. They had lost contact for a couple of years, and then he found his brilliant and resourceful friend contemplating a path toward exiting from life.
“It’s not that she wanted to do it, but she couldn’t find any way to sustain herself. Matt, Jane and I had a Zoom call with her,” Steve said. “It was a very tearful conversation, where we basically assured her, ‘You are safe in our hands — you do not need to take that drastic step of going up to Vermont to surrender to death.’”
“She was like, ‘OK, I see you’re in my corner, you’re going to fight with and for me and help me,’” said Steve, noting the team then started researching every potential solution and making calls.
“In the end, she did a lot of work on her own. Our role in this particular case was to be human, passionate and empathetic.”
Resiliency Restored
Ultimately, Sarah found an affordable unit to rent that is accessible to enter and adaptable inside. She lives in a temperate rural area – which is good for managing her MS.
With her resiliency restored and United Spinal in her corner, Sarah is ready to begin sharing her story.
She wants the government to address disability not with assisted suicide but with meaningful access to housing, transportation, employment, education, plus health and attendant care.
She has picked up the advocacy megaphone again and is grateful to United Spinal for saving her life.
If you are thinking of harming yourself, please call the 988 Suicide & Crisis Lifeline. Contact our Community Support team for more information about all of United Spinal’s chapters and programs. Join us by signing up for a free membership. To support our mission, donate here.
