Blog, Policy

The Future is Inclusive (and Here’s How We Get There)

  • This is author Steve Wright’s first post in a forward-looking three-part series about access and inclusion.
  • Everything boils down to our right to dignity and quality of life.
  • That includes the right to fly.
  • And to expect full accessibility to all society has to offer.

United Spinal Association CEO Vincenzo Piscopo wakes daily to dozens of tasks. And they are all focused on making the world a safer, healthier, and more inclusive place for wheelchair users and all people with disabilities.

Modeling inclusion, a man wearing glasses and using a wheelchair listens to a woman wheelchair user.
United Spinal Association CEO Vincenzo Piscopo listens to an advocate’s thoughts.

In the dozen years since he joined the disability community and started using a wheelchair for mobility, Enzo feels everything boils down to civil rights.

“Society allows for the abuse of people with disabilities. It’s so ingrained in our culture’s DNA that we don’t even recognize it,” he says. He runs through a list of indignities he regularly experiences, from the inaccessible scale at his doctor’s office to the limited accessible seating at Braves’ games.

“We want to go out, but we experience places that are not accessible. It’s ableism, and what makes it worse is that people don’t even realize they are ableists. The belief that we are less than nondisabled people is so ingrained in them that discrimination is considered OK.”

Enzo lets these experiences fuel his passion for improving the lives of everyone with a spinal cord injury and all people with disabilities. He allowed me a sneak peek at how he plans to change society’s view of disability.

Wellbeing, accessibility, removing stigma and public policy

Enzo uses the analogy of a four-legged table to explain what needs to change for wheelchair users to enjoy the quality of life they deserve. Each leg must be strong, or the table will not hold anything for long.

  1. Wellbeing. “We must ensure our people are well and healthy,” says Enzo. “We must address all domains — spiritual, mental, physical, social, sexual health – and all the nuances that come with them.” He points to United Spinal’s Community Support and Peer Support programs as places our members can find resources and support for all these areas of their lives.
  2. Accessibility. “If a wheelchair user’s place of work is not accessible, he cannot make money, and he cannot be empowered and pay bills. If she goes out to a park and it’s not accessible, she cannot live life to the fullest. If tech is not accessible, it is not inclusive. So, making everything accessible across the board is a big factor.”
  3. Removing stigma. “Stigma is the belief that we, people with disabilities, are less than others. And when that belief exists, all the inequities we regularly see in our community become OK. When people think less of us, they are less inclined to hire and invest in us. We need to work on removing such stigma. An airline executive once told me that making the plane truly accessible was just too expensive. To me, that means he believes our dignity is not worth the investment. That’s what stigma does to us.”
  4. Public policy. “We can be healthy, we can have the best access, and people can think the best of us – but we still cannot reach our fullest potential if public policy is not changed. We cannot have insurance that is so difficult for so many to access. We cannot have hiring policies that fail to be inclusive. We cannot have gaps in transportation, mobility and housing. We are working from the federal to the local level to change policy.”

Take air travel, for example

“The way airlines treat people with disabilities is not humane,” says Enzo. For one, manufacturers must rebuild planes to allow wheelchair users to board in their mobility devices. “There are structural, root changes that must take place.”

Being a CEO didn’t protect Enzo from mistreatment at an airport. “I was dropped to the floor,” he told Atlanta News First in May 2022. Although two agents were supposed to help transfer people into aisle chairs, only one assisted Enzo, and one was insufficient. Fortunately, another passenger was willing to help, but many passengers with disabilities are not that lucky.

“It was very concerning to me because I could have hit my head or broken my leg,” Enzo told Atlanta News First. “On top of that, it is an undignified experience. It’s not dignified for a human being to be dropped on the floor in front of people.”

The worst has happened to other wheelchair users. Disability advocate Engracia Figueroa died from a pressure wound after United Airlines destroyed her $30,000 customized wheelchair. And Gaby Assouline died from injuries sustained after flipping out of her chair on a jetway. Her family says she did not receive the requested help.

“I never met Gaby, but I sure knew she was my soul sister,” says Kent Keyser, a Public Policy Fellow with United Spinal. “When I heard that we lost another one to the airlines, I was sick to my stomach and prayed I didn’t know them. Then when I read the news story, I was just plain pissed off that this happened to someone I sure know but never met. Damn it, she was my soul sister in a policy fight that’s David versus Goliath all over again.”

To say United Spinal is passionate about making airlines work for wheelchair users is a gross understatement. Join our efforts to take the fight to the airlines by joining our Grassroots Advocacy Network.

We have an ally in U.S. Department of Transportation Secretary Pete Buttigieg, who was instrumental in creating the first Airline Passengers with Disabilities Bill of Rights. In an interview, he said he is committed to better onboard wheelchair access for air travel. “The number of times that people arrive at their destination without their wheelchair working, which is basically as though some of you didn’t get there at all. It can be wildly disruptive for a professional person, for anyone,” he said. “We can take the … Bill of Rights as a tool that can empower travelers [who use wheelchairs]. We can create some healthy pressure on the travel industry to respect those rights,” Buttigieg says.

“It’s one thing to say the right thing. But we’re putting our money where our mouth is, and I’m especially excited about that.

The constant battle for access

Kleo King, United Spinal’s Accessibility Services Senior Vice President, is a primal force for access. She consults with governments and businesses on why they must make their built environments work for everyone.

“We always tell states and cities that code is the floor, not the ceiling. Their building codes can require more than the ADA,” says Kleo. “In New York City, 100% of entrances have to be accessible – more than the 60 percent required by the ADA.”

All accessibility should be gracefully inclusive, like this Metro turnstile.

And it’s an ongoing battle. “We need to constantly educate architects and builders about really good inclusive design practices,” she says. But when something is built right, it’s a joy to use. “Think of airports where you walk or roll around divides for privacy — there are no doors. That approach could remove heaving, obstructing doors in many public facilities.” Then, accessibility would be gracefully inclusive.

Kleo’s team works nationwide with large and small clients to implement universal design. “We tell them to look at universal design that makes facilities easier to use for everybody. That’s good business,” she says as she ticks off trends to watch for. “A big thing coming soon is adult changing stations in public bathrooms. It is a crucial need. We must also ensure that electric and autonomous vehicles and all charging stations are accessible.”

King said anyone who owns or leases a building used by the public could benefit from United Spinal’s Accessibility Services. “Every building needs an access audit, and every business should have an accessibility consultant,” she says.

Three-point plan for freedom

On Kleo’s team is Marsha Mazz, a three-decade veteran of the U.S. Access Board and United Spinal’s Director, Accessibility Codes and Standards. She adds three goals that would lead to a more inclusive future:

  1. Improve ADA standards – and state building codes – to provide for better wheelchair maneuvering and positioning. Without this, building codes fail millions of people using mobility devices.
  2. Revise the Fair Housing Act’s accessibility requirements. Until the 1989 rules are updated, people with disabilities will continue to face significant shortages in affordable, accessible housing. We will also continue to be forced to make accessibility adaptations at our own expense.
  3. The U.S. Department of Transportation and the U.S. Department of Justice must adopt clear guidelines that municipalities can use to make meaningful accessibility changes to their pedestrian infrastructure. DOT should ensure accessible transit facilities, and the DOJ needs to enforce the law for barrier-free public rights of way.

Marsha says United Spinal is also working on micromobility and how dockless scooters and bikes can be hazardous for people with disabilities if not strongly regulated. Cities must also do more to ensure that buildings are in accessible condition – so elevator outages are not ignored for long periods in residential or commercial buildings.

This is all an incredibly long to-do list. It encompasses everything from health and well-being to getting reckless scooter punks to dock their wheels properly. But United Spinal’s vision is a world where people with spinal cord injuries/disorders, wheelchair users, and others with disabilities can realize their full potential. And the whole team is passionate about bringing that inclusive world into being.

  • Steve Wright

    Steve Wright posts disability advocacy and Universal Design ideas daily at his blog: Urban Travel, Sustainability & Accessibility.