WHAT IS A PHYSICAL DISABILITY?

INSIGHTS FROM THE UNITED SPINAL ASSOCIATION

Physical therapy clinics, often like fitness gymnasiums, are designed for a wide range of exercises, manual therapy, mechanical devices, and stations for heat, cold, electricity, sound waves, and radiation treatment.

PTs also can help a person adjust to using a prosthesis or assistive mobility device.

The goal is to minimize loss of mobility via specific treatment, fitness and wellness programs tailored to the person’s condition, age, goals, etc.

People with physical disabilities also benefit from an occupational therapist.

This is similar, but instead of a fitness center, the clinic is set up like a workplace – an office, industrial or other setting.

OTs retrain people with physical disabilities to return to their jobs via new approaches to doing physical labor or with assistive devices.

OTs also train people with physical disabilities for an entirely new career, should their disability preclude their reassuming their prior job duties.

Many of United Spinal Association’s Rehabilitation & Therapeutic members provide PT, OT, and other invaluable services for people with physical disabilities.

WHAT IS A PHYSICAL DISABILITY?

INSIGHTS FROM THE UNITED SPINAL ASSOCIATION

People with physical disabilities are served by dozens of nationwide nonprofit advocacy groups that raise funds for research, treatment, adaptive equipment, mobility devices, job training, educational opportunities, quality of life, political advocacy and other efforts that champion inclusion in all aspects of daily life.

Longstanding nonprofits include, but are not limited to, United Spinal Association, United Cerebral Palsy, Arthritis Foundation, Muscular Dystrophy Association, National Multiple Sclerosis Society, Epilepsy Foundation and Spina Bifida Foundation.

Most people with physical disabilities can benefit from a licensed physical therapist.

Hospitals have in-patient physical therapy for people recovering from surgery or treatment.

Outpatient physical therapy clinics have significantly grown in the 21st century.

A physician usually writes a prescription, and the PT analyzes X-rays and medical reports.

The physician then interviews the person while creating a course of treatment.

WHAT IS A PHYSICAL DISABILITY?

INSIGHTS FROM THE UNITED SPINAL ASSOCIATION

Even with the boost in work-from-home technology during the COVID pandemic, people with physical disabilities were pushed into jobs below their ability, less than full-time work or unemployment – at numbers far lower than people who do not have a disability.

This leads to poverty or barely enough income to pay for accessible housing, transportation, health care, personal care and food.

Adults with physical disabilities report experiencing frequent mental distress almost five times as often as adults without disabilities, as researched and reported by the CDC.

A CDC study found that about one-third of adults with physical disabilities experienced frequent mental distress, defined as 14 or more reported mentally unhealthy days in the past 30 days.

During the COVID pandemic, mental health issues rose in the disability community.

Isolation, a reduction in PCA availability, and having an underlying condition that made the impact of COVID more dangerous contributed to depression, anxiety, and other issues.

Prevalent causes of mental health distress among people with physical disabilities include poor access to health care, isolation from the community, and poverty. Peer support groups may help break down isolation.

WHAT IS A PHYSICAL DISABILITY?

INSIGHTS FROM THE UNITED SPINAL ASSOCIATION

United Spinal Association has focused on the quality of life for people with spinal cord injuries/disorders for over 75 years. The association advocates for all wheelchair users and those using assistive mobility devices – no matter the underlying cause.

Rheumatoid and osteoarthritis and related inflammatory conditions are the most common physical disabilities resulting from a medical condition post-birth.

Cerebral palsy is the most common physical disability from childbirth.

Spinal cord injury is the most common physical disability resulting from traumatic injury, though some SCIs can result from a medical condition.

More than one in four people (27%) have some level of disability that impacts their daily lives, according to The Centers for Disease Control and Prevention. 

This includes physical, visual, hearing and cognitive disabilities. 

That means there are roughly 90 million people in the United States who have a disability.

The U.S. Census Bureau’s American Community Survey estimates that at least 7% of Americans have a physical disability. 

U.S. Bureau of Labor statistics prove that people with physical disabilities are by far the most under- and unemployed of all marginalized groups in America.

WHAT IS A PHYSICAL DISABILITY?

INSIGHTS FROM THE UNITED SPINAL ASSOCIATION

Many people with physical disabilities benefit from personal care attendants. 

These trained professionals are not nurses but are skilled at helping with daily routines to prepare for work, meals, recreation, and sleep.

Also, since the passage of civil rights laws such as the Americans with Disabilities Act in 1990, adaptations to transit, transportation, sidewalks, parks, education centers, workplaces, shopping centers and the arts can make them accessible to people with disabilities.

Examples of physical disabilities

Physical disability is often the result of a medical condition, such as muscular dystrophy, multiple sclerosis, arthritis or epilepsy.

Some disabilities are present at birth, such as cerebral palsy, spina bifida and partially formed/not fully functional limb or extremity.

Physical disability also can result from an injury, such as loss/reduction of use of a limb or spinal cord injury.

WHAT IS A PHYSICAL DISABILITY?

INSIGHTS FROM THE UNITED SPINAL ASSOCIATION

Physical disability is defined as a limitation on a person’s physical functioning, mobility, dexterity or stamina.

Although a physical disability substantially impacts an individual’s ability to do normal daily activities, it does not preclude quality of life.

Many people with physical disabilities are employed, go to school, raise families and engage in other meaningful activities.

Physical disability can impact a person’s ability to bathe, dress, prepare meals, do chores and other daily activities.

It can affect speech and communication.

But with proper support and services, a person with a physical disability’s life is as meaningful as anyone else’s.

The use of durable medical equipment, such as shower benches, grab bars, and wheelchairs, can mitigate physical disability.

Smart technologies that allow appliances to be operated by voice have increased the ability of people with physical disabilities to control their environment.

And a whole host of assistive technology exists to support people with physical disabilities in leading rich and fulfilling lives.

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.