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.

DISABILITY VISABILITY

IT’S A THING

Multiple U.S.  federal agencies have documented that one in four persons in America has some type of disability.

Never have so many tens of millions been so invisible.

“I never see anybody in those accessible parking spaces”

“We shouldn’t do away with steps into a building for a special interest.”

“Why should we make our restaurant/shop accessible to a tiny fraction of people?”

I’ve heard these and far worse 10,000 times and counting.

All are wrong headed and mean spirited.

First off, people with disabilities and their families represent one of the biggest buying power blocs in the nation.

Second, why are people who would NEVER dismiss the rights and validation of people of a race/religion/gender/orientation different from their own – be so willing to be totally dismissive of people with disabilities and trample their rights?

I don’t know the answer, but I think its’ because for some common character flaw in the non-disabled, people with disabilities are all but invisible.

That why, this year I’m going to publish lots of images of people with disabilities immersed in everyday city life.

It will prove the need for wheelchair access for subways, parks, restaurants, offices, universities, buses, sidewalks and everything else everyday people immerse themselves in.

WE ARE TEACHING UNIVERSAL DESIGN

AT THE UNIVERSITY OF MIAMI SCHOOL OF ARCHITECTURE

We have launched a first of its kind course on Universal Design.

We is my wife, Heidi Johnson-Wright, and yours truly.

Our gratitude to UMSoA Dean Rodolphe el-Khoury, Director of the Undergraduate Program Jaime Correa and countless faculty and staff members is beyond words.

My evolution as a writer and planner came about because of the UMSoA.

I learned city and regional planning from then Dean Elizabeth Plater-Zyberk, who also hired me to work on writing projects. I learned about community building from the former Knight Program at the UMSoA.

My leadership as an urban policy advisor for the chairman of the Miami City Commission was fueled by various UMSoA professors and colleagues.

It has been a dream to influence you designers, to teach them about human-centered architecture and planning.

Heidi, a lifelong public servant with more than two decades of experience as an Americans with Disabilities Act professional, has used a wheelchair for mobility for four decades.

We have celebrated the triumphs of barrier-removal and railed against the injustice of even brand new buildings, streetscapes and parks that are littered with poor design that limits or largely blocks access by wheelchair.

Together, we have published nearly 1,000 articles on design, planning, policy and other issues related to people with disabilities.

I have covered Universal Design for dozens of major publications, including Planning, the magazine of the American Planning Association, which published a 2021 opinion piece advocating for the teaching of Universal Design at the higher education level.

The brilliant late architect Ron Mace created the concept of Universal Design -- defined as design usable by all people to the greatest extent possible, without the need for adaptation or specialization.

Universal Design goes far beyond ADA compliance.

It is elegant, welcoming, durable, efficient and sustainable.

We will be featuring guest experts – architects and consultants, many who have a disability – via Zoom and hopefully in-person at the Coral Gables campus.

We will be empowering both undergraduate and undergraduate students with the ability to design for all while making the world a better place.

EASTERSEALS DISABILITY FILM CHALLENGE

CHECK OUT AND SUPPORT ANNA PAKMAN’S

“SOCIAL FITNESS” MOCKUMENTARY

Social Fitness

Anna Pakman, my new friend and a disabled filmmaker, has released a very short film about pandemic life. The film, created for Easterseals Disability Film Challenge, features a cast that includes 70% performers with disabilities.

“SOCIAL FITNESS” is a mockumentary on the shared experience of quarantine, finding humor in the commonalities of pandemic life culture. The cast and crew behind the film represent diverse communities with disabilities, including Cerebral Palsy, Multiple Sclerosis, Autism, Mental Illness, Epilepsy, PTSD, Limb Difference, ADHD, traumatic brain injury, and Osteogenesis Imperfecta (OI), alongside committed non-disabled allies.

I checked out an advance media screening. I love the skewed sense of humor, because quirky appeals to me. The inclusion of people who are both talented on-screen and diverse, gets huge bonus points.

The material that follows is taken from the press release about the short and the Easterseals support of disability and diversity.

With COVID-19 restrictions limiting in-person filmmaking, the team took advantage of advanced editing technology and the Zoom video conferencing platform to bring together talent from New York, New Jersey, California, and Florida in one seamless remote production.

The Easterseals Disability Film Challenge is a filmmaking contest that challenges filmmakers to produce original films in just five days (March 16-21, 2021) and gives new voices within the industry an opportunity to write and produce short films that challenge the limited representation of disabilities in the media by telling stories to showcase disability in its many forms.

Although people with disabilities are 20% of the U.S. population, a Ruderman Family Foundation study found that only 2% of characters on Primetime TV have disabilities, with only 5% of those authentically cast with disabled actors. The team behind Annatated Productions shares Easterseals’ goal to elevate this through high-quality entertaining content and create a better pipeline for disabled artists to showcase their talent to the industry.

The film’s producer, writer and director, Anna Pakman said, “Growing up with a physical disability, I rarely saw myself represented in front of or behind the camera. Making my own content has allowed me to rewrite that narrative by creating roles that defy the typical disability tropes used by Hollywood. I am grateful to Easterseals for giving us this platform to show audiences around the world what we can do.”

Pakman, who uses a wheelchair for mobility, added “People with disabilities tend to be masters of adaptability from years spent learning how to navigate inaccessible spaces, so it felt especially poignant to look back at a time when the whole world had to learn how to adapt to an unexpected situation that changed the course of everyone’s daily lives and find the humor in the ‘new normal.’”

Pakman will be joined by a powerhouse cast featuring internationally renowned comedienne Maysoon Zayid (General Hospital, You Don’t Mess With the Zohan), Bree Klauser (Audible Original Phreaks, Apple TV’s SEE), Anita Hollander (National Chair, SAG-AFTRA Performers with Disabilities Committee, Law & Order, FBI: Most Wanted), Liz Simons (Broad City), Eric Stafford (The Blacklist, Alpha House), BJ Lange (Jimmy Kimmel LIVE!), Shashi Bangera (Sesame Street, Kelly & Cal), Mary von Aue, Josey Miller, and Sylvia Longmire.

The production team also includes editor Liz Pritchard (A&E’s The Employables, ADA30 Lead on Celebration of Disability Arts, Culture, Education and Pride), advertising industry veteran Jd Michaels of Michaels.Adams, and Stefanie Parish. 

Here’s the link:

https://www.youtube.com/watch?v=awnB9jUGOig

Anna Pakman

https://www.youtube.com/watch?v=awnB9jUGOig

RIDESHARE MUST BE 100 PERCENT INCLUSIVE

PLEASE TAKE THIS SURVEY TO GIVE INPUT ON WHEELCHAIR USER EXPERIENCE WITH UBER AND LYFT 

I'm promoting very important research on accessibility with rideshare.

My brilliant colleague needs input on Uber and Lyft.

Wheelchair users, family members, caregivers, etc. can give valuable input.

The app-based gig economy MUST not be allowed to exclude the disability community.

Please click on the link below and take the survey.

Please share this with those who can give valuable input.

From my friend and colleague Mahtot Gebresselassie, at Virginia Tech:

I'm researching #accessibility of Uber/Lyft & looking for participants anywhere in the US. R u/do u know former/current #wheelchair user? Experience w Uber/Lyft not a must to participate. I want to know impressions too. #a11y #Transportation #Disability 

https://virginiatech.qualtrics.com/jfe/form/SV_6rsUle54qKYYWqx?SC=TW

https://virginiatech.qualtrics.com/jfe/form/SV_6rsUle54qKYYWqx?SC=TW

COVID-19 TEST EPIC FAIL AT MARLINS PARK IN MIAMI

DISABILITY DISCRIMINATION, 3 HOURS AT SITE FOR 15 MINUTE TEST, 10 DAYS WITH NO TEST RESULTS AND ULTIMATELY LIED TO THAT WE WERE NEVER TESTED (WE HAVE PROOF THAT WE WERE THERE)

To check our health and make sure of our COVID status for those we come in contact with, we went online and scheduled appointments for the two of us.

We had that 8 a.m. first appointment of day 9-10, but took nearly 3 hours.

Follow up calls have produced an idiotic and painful answer that they have no record of our being there.

We have proof – online appointment print out, paper work plus grease pencil marking on back of our vehicle that they only do onsite.

It doesn’t matter, they failed and lie about it.

While we’re recounting the endless list of failures, here's a hint for testing site.

Don't blare loud music at tent where they draw blood/take nasal swab.

There is car engine, traffic, MIA flight path, generator noise.

You are talking through a mask, through your closed window to a person wearing a mask - no one can hear.

At free test site, train staff to accommodate people with disabilities.

Guy in charge did major discrimination, telling my wife to drive home without getting tested. I had to start phone video to make him responsive.

Tens of thousands of people with disabilities deserve better

Staff said they could not enter wheelchair ramp van to swab my wife and draw her blood.

They ignored my clear, booming voice explaining she could roll out the ramp (full or to top of it) to give them access to her same as rest of drivers rolling down their window.

Clueless, rude, discriminating staff forced delicate door to $75,000 wheelchair ramp without asking first.

This can cause damage, detected weeks later, that will destroy my wife's mobility.

Proof that we were persons tested #34 and #35 on September 10, 2020 at Marlins Park

To document this, I started taking video on my I-Phone.

The staff then threatened to remove me from the site without testing I kept exercising my basic American right of documenting incompetence and discrimination via video on my phone.

Got blood results onsite, (negative for both of us, bud advised that nasal swab results also must be read to know for sure) then told swab takes max four days for results.

Nothing online, so my wife calls to see what's up after four days.

She reached a totally unhelpful person who claimed she had zero record of our even having an appointment for September 10, when we wasted nearly half a day trying to get tested.

Worthless call to info number took more than an hour -- 20 minutes with an imbecile who insisted we had no appointment & were not tested (we have proof otherwise) then 40 minutes on hold waiting for a supervisor -- then hung up on before reaching a human.

We have no symptoms, but when you take the time to go in -- trying to be responsible -- you want to see your results.

My wife has multiple underlying conditions and is undergoing a treatment that lowers immunity.

She needs test results now.

To date, three wasted hours at Marlins Park (should take 15 minutes) = disability discrimination + unprofessional behavior + lost test results. 

My wife, who uses a wheelchair for mobility, needs results -- but it is clear that none are coming and the company making tens of millions off of testing for Florida could care less.

Who is going to fix this?