SHE CONSIDERED SUICIDE BUT FOUND US — AND HOPE – INSTEAD

OUR COMMUNITY SUPPORT TEAM RALLIED AROUND A PERSON

AT WIT’S END – LITERALLY SAVING HER LIFE

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.

 

 

SHE CONSIDERED SUICIDE BUT FOUND US — AND HOPE – INSTEAD

OUR COMMUNITY SUPPORT TEAM RALLIED AROUND A PERSON

AT WIT’S END – LITERALLY SAVING HER 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 of Sarah’s contemplating the end of her life. 

“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.”

SHE CONSIDERED SUICIDE BUT FOUND US — AND HOPE – INSTEAD

OUR COMMUNITY SUPPORT TEAM RALLIED AROUND A PERSON

AT WIT’S END – LITERALLY SAVING HER LIFE

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.

SHE CONSIDERED SUICIDE BUT FOUND US — AND HOPE – INSTEAD

OUR COMMUNITY SUPPORT TEAM RALLIED AROUND A PERSON

AT WIT’S END – LITERALLY SAVING HER LIFE

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.”

SHE CONSIDERED SUICIDE BUT FOUND US — AND HOPE – INSTEAD

OUR COMMUNITY SUPPORT TEAM RALLIED AROUND A PERSON

AT WIT’S END – LITERALLY SAVING HER LIFE

The six-member Community Support 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.

SHE CONSIDERED SUICIDE BUT FOUND US — AND HOPE – INSTEAD

OUR COMMUNITY SUPPORT TEAM RALLIED AROUND A PERSON

AT WIT’S END – LITERALLY SAVING HER LIFE

Sarah 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).”

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.

 

SHE CONSIDERED SUICIDE BUT FOUND US — AND HOPE – INSTEAD

OUR COMMUNITY SUPPORT TEAM RALLIED AROUND A PERSON

AT WIT’S END – LITERALLY SAVING HER LIFE

“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.”

SHE CONSIDERED SUICIDE BUT FOUND US — AND HOPE – INSTEAD

OUR COMMUNITY SUPPORT TEAM RALLIED AROUND A PERSON

AT WIT’S END – LITERALLY SAVING HER LIFE

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.”

SHE CONSIDERED SUICIDE BUT FOUND US — AND HOPE – INSTEAD

OUR COMMUNITY SUPPORT TEAM RALLIED AROUND A PERSON

AT WIT’S END – LITERALLY SAVING HER LIFE

“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.

SHE CONSIDERED SUICIDE BUT FOUND US — AND HOPE – INSTEAD

OUR COMMUNITY SUPPORT TEAM RALLIED AROUND A PERSON

AT WIT’S END – LITERALLY SAVING HER LIFE

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.

SHE CONSIDERED SUICIDE BUT FOUND US — AND HOPE – INSTEAD

OUR COMMUNITY SUPPORT TEAM RALLIED AROUND A PERSON

AT WIT’S END – LITERALLY SAVING HER LIFE

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.

SHE CONSIDERED SUICIDE BUT FOUND US — AND HOPE – INSTEAD

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.

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.

NEW SINGLE-AISLE AIRPLANES WILL HAVE ACCESSIBLE LAVATORIES

U.S. DOT SECRETARY PETE BUTTIGIEG EXPLAINS THE NEW RULE IN AN EXCLUSIVE INTERVIEW WITH UNITED SPINAL ASSOCIATION CORRESPONDENT STEVE WRIGHT

Transportation Secretary Pete Buttigieg noted that DOT has awarded billions of dollars through the bipartisan infrastructure law to modernize airport terminals.

This includes adding wheelchair ramps and accessible restrooms. 

He says DOT is laying the groundwork for a potential future rule to address passengers staying in their own wheelchairs when they fly.

Buttigieg knows the ultimate game changer for wheelchair users in our aviation system would be boarding airplanes and other transit modes with the same ease as nondisabled passengers.

“We know it won’t happen overnight. 

We want to be realistic but not patient,” says Buttigieg. 

“We’re making it clear to the aviation industry that’s the direction we need to move in, and we are taking concrete steps toward research development of safety standards. 

And we are ensuring the advocacy community is participating.”

NEW SINGLE-AISLE AIRPLANES WILL HAVE ACCESSIBLE LAVATORIES

U.S. DOT SECRETARY PETE BUTTIGIEG EXPLAINS THE NEW RULE IN AN EXCLUSIVE INTERVIEW WITH UNITED SPINAL ASSOCIATION CORRESPONDENT STEVE WRIGHT

DOT is currently working on rules to require better training for airline staff who physically assist passengers with disabilities or handle battery-powered wheelchairs or scooters.

“There’s no question that alongside physical accommodations, there needs to be improvement in the training of staff who work with passengers with disabilities,” Transportation Secretary Pete Buttigieg says. 

“We see it in terms of dignity and safety.

There are many clear cases where proper training would have made a difference [in avoiding serious injury]. 

We would like to get the notice of proposed rulemaking out this year.” 

NEW SINGLE-AISLE AIRPLANES WILL HAVE ACCESSIBLE LAVATORIES

U.S. DOT SECRETARY PETE BUTTIGIEG EXPLAINS THE NEW RULE IN AN EXCLUSIVE INTERVIEW WITH UNITED SPINAL ASSOCIATION CORRESPONDENT STEVE WRIGHT

Alexandra Bennewith, Vice President, Government Relations, speaks passionately about this new rule’s significance for all wheelchair users.

“As new aircraft are ordered and rolled out after 10-12 years, a lot of wheelchair users will no longer have to fear air travel, dehydrate themselves or experience the indignities or humiliation of restricted bathroom use,” she says.

“They will be able to work, visit family and friends or go on that anniversary trip that they have dreamed about for years. 

This is good news to hear today on the 33rd anniversary of the ADA.”

NEW SINGLE-AISLE AIRPLANES WILL HAVE ACCESSIBLE LAVATORIES

U.S. DOT SECRETARY PETE BUTTIGIEG EXPLAINS THE NEW RULE IN AN EXCLUSIVE INTERVIEW WITH UNITED SPINAL ASSOCIATION CORRESPONDENT STEVE WRIGHT 

Transportation Secretary Pete Buttigieg and U.S. Senator Tammy Duckworth are advocates for accessible air travel.

“Our community has advocated tirelessly for the simple human need and right to use an aircraft restroom,” says Alexandra Bennewith, Vice President, Government Relations.

“After almost a decade, our advocates won a final rule, speeding up requirements for larger, more accessible lavatories.”

 

NEW SINGLE-AISLE AIRPLANES WILL HAVE ACCESSIBLE LAVATORIES

U.S. DOT SECRETARY PETE BUTTIGIEG EXPLAINS THE NEW RULE IN AN EXCLUSIVE INTERVIEW WITH UNITED SPINAL ASSOCIATION CORRESPONDENT STEVE WRIGHT

The onboard airplane lavatory rule requires the following:

Airlines to make lavatories on new single-aisle aircraft large enough to permit a passenger with a disability and attendant to approach, enter, and maneuver within as necessary to use the aircraft lavatory.

The lavatory to be equivalent in size to two 95th percentile males. 

A 95th percentile male is 6 feet, 2 inches tall and 246 pounds.

NEW SINGLE-AISLE AIRPLANES WILL HAVE ACCESSIBLE LAVATORIES

U.S. DOT SECRETARY PETE BUTTIGIEG EXPLAINS THE NEW RULE IN AN EXCLUSIVE INTERVIEW WITH UNITED SPINAL ASSOCIATION CORRESPONDENT STEVE WRIGHT

Last December, DOT awarded nearly $700 million through its All Stations Accessibility Program to retrofit old rail and subway stations, adding elevators, ramps, and other improvements. According to a DOT press release,

“The program, funded through the infrastructure law, is designed to improve the accessibility of transit rail stations so everyone, including people who use wheelchairs, push strollers, or cannot easily navigate stairs, can reliably access the rail systems in their communities.”

NEW SINGLE-AISLE AIRPLANES WILL HAVE ACCESSIBLE LAVATORIES

U.S. DOT SECRETARY PETE BUTTIGIEG EXPLAINS THE NEW RULE IN AN EXCLUSIVE INTERVIEW WITH UNITED SPINAL ASSOCIATION CORRESPONDENT STEVE WRIGHT

The influence of advocates is apparent because the original rule would have pushed back accessible restrooms on new plane orders to 18 years from now, and delivery of new planes 20 years from now. 

That would have been an entire generation of wheelchair users not able to use the lavatory on flights.

That waiting period was virtually cut in half because of input from disability advocacy leaders such as United Spinal.

NEW SINGLE-AISLE AIRPLANES WILL HAVE ACCESSIBLE LAVATORIES

U.S. DOT SECRETARY PETE BUTTIGIEG EXPLAINS THE NEW RULE IN AN EXCLUSIVE INTERVIEW WITH UNITED SPINAL ASSOCIATION CORRESPONDENT STEVE WRIGHT

Dedicated United Spinal advocates spoke directly to legislators about the importance of accessible air travel at this year’s Roll on Capitol Hill.

Asked if United Spinal and other advocacy groups pushing for this improvement is a blueprint for DOT rule changes that improve accessibility for air and other modes of travel, U.S. Department of Transportation Secretary Pete Buttigieg says, 

“Absolutely. We would not be here making these kinds of announcements without not just the passion, but also the expertise that advocacy groups can contribute. 

There’s no way for policymakers to understand how to make good choices without the input of people who have navigated our transportation systems with a disability.”