IN OBSERVANCE OF THE 32ND ANNIVERSARY OF THE AMERICANS WITH DISABILITIES ACT

  WE PRESENT: FIVE EPIC ACCESSIBILITY FAILS IN MIAMI

San Diego is like Miami — older roots but most of its rapid growth was in the highway era. 

Yet when I spoke about universal design at a national conference there this year, I found 10-, 12-, and 15-foot-wide sidewalks in the thriving Little Italy, Gas Lamp, Downtown, and Waterfront districts. 

There is only so much space between buildings on each side of the road and Miami gives almost all of it to cars instead of human beings.

There's also a single, narrow curb ramp at nearly every intersection.

It lines up with neither painted crosswalk. 

No matter what direction a wheelchair user is traveling, they are forced to veer partway into oncoming traffic to get to the crosswalk protected by the red light.

STEVE WRIGHT AND HEIDI JOHNSON-WRIGHT DAY IN THE CITY OF CORAL GABLES

 JULY 25, 2022 – THE EVE OF THE 32^ND ANNIVERSARY OF THE ADA

We were honored for creating and team teaching a groundbreaking Universal Design Course at University of Miami School of Architecture in the Spring semester of 2022.

Thanks to Commissioners Kirk Menendez and Rhonda Anderson for co-sponsoring the legislation honoring our hard work. We appreciate Commissioner Menendez’s kind reading of our accomplishments/bios into the official City Commission meeting record:

Steve Wright, an award-winning journalist and marketer, and Heidi Johnson-Wright, a lifelong public servant and Americans with Disabilities Act (ADA) expert, based the course on their three decades of expertise and advocacy. The 32nd anniversary of the ADA is tomorrow, July 26 – with a celebration at County Hall.

Johnson-Wright has used a wheelchair for mobility for 40 years and brings her practical experience as well as her 30+ years of professional expertise to the classroom. Wright is America’s go-to journalist for reporting on architecture, town planning, mobility engineering and urban policy – as they relate to people with disabilities and access for all.

The revolutionary full-credit course for graduate and undergraduate students reflected UM’s commitment to diversity, equity, inclusion and accessibility for all.

Universal Design is extremely relevant because the United Nations has identified more than one billion people in the world have disabilities.  Centers for Disease Control research has proven that one in four people in the United States will experience some form of disability.

The Wrights have published more than 1,000 articles on best practices for planning, architecture, transportation engineering and urban design for people with disabilities.

They have lectured at national conferences across the United States and in Europe. This year, they have combined to appear on more than one dozen podcasts focusing on better housing, mobility, jobs, parks and quality of life for people with disabilities.

The Wrights donated 100 percent of their School of Architecture professor pay toward further outreach and education to support Universal Design on a global scale. Funds support travel and related expenses supporting pro bono presentations on “design for all” at major conferences and conventions.

IN OBSERVANCE OF THE 32ND ANNIVERSARY OF THE AMERICANS WITH DISABILITIES ACT

  WE PRESENT: FIVE EPIC ACCESSIBILITY FAILS IN MIAMI

Miami is a newer city whose population exploded in the automobile era, so it is understandable that it doesn’t have wide, unobstructed sidewalks like northeastern and midwestern cities that came of age when people walked to work and to meet their daily needs. 

But when I show images of cramped sidewalks — too narrow for a wheelchair barely wider than two feet to use safely, located in historic and high-density areas such as Miami Beach and Little Havana — planners at an international conference in Paris gasped.

IN OBSERVANCE OF THE 32ND ANNIVERSARY OF THE AMERICANS WITH DISABILITIES ACT

  WE PRESENT: FIVE EPIC ACCESSIBILITY FAILS IN MIAMI

A national retailer that earns well over $1 billion per year certainly can invest in putting an elevator in the front so wheelchair users can enter with dignity (or at all). 

Far worse is that if there was a fire, active shooter, or any other emergency, those unable to use the escalator would be trapped in the middle of the chaos. 

It seems like this would violate basic building and safety code standards, but the City of Miami has allowed this situation to persist for decades.

IN OBSERVANCE OF THE 32ND ANNIVERSARY OF THE AMERICANS WITH DISABILITIES ACT

  WE PRESENT: FIVE EPIC ACCESSIBILITY FAILS IN MIAMI

We love shopping at discount department stores, and the Marshalls downtown store is close to my wife’s workplace and our home. 

The store, near the bayside on Flagler Street, has 99 percent of its access via an escalator.

An elevator is hidden within the aging retail complex, far from the escalator. 

It arrives on the second level of Marshalls, not near the checkout areas.

Because Marshalls does not want people to be able to sneak out of the elevator without paying, it has controlled access only.

There’s a button to ring, which doesn’t ring.

It lists a phone number to call, but the phone is never answered.

 

IN OBSERVANCE OF THE 32ND ANNIVERSARY OF THE AMERICANS WITH DISABILITIES ACT

  WE PRESENT: FIVE EPIC ACCESSIBILITY FAILS IN MIAMI

Limited Use Limited Access (LULA) lifts are allowed in the building code, but we find that they can break down in less than a year of use. 

There are several in Miami Beach. The late star architect Michael Graves — who used a power wheelchair for mobility in the last decade of his life — designed three outdoor LULA lifts into a development at Ocean Drive and 15th Street. 

But they got rusty in the salty air, keys required to operate them got lost, people used them as bathrooms, and eventually, they broke down. 

Now they've been ripped out and there is zero wheelchair access.

In Brickell, LULA lifts are often used as an alternative to ramps. 

So if a LULA lift is available, it's often blocked with giant planters or outdoor dining tables.

Once the lifts are broken or blocked, wheelchair users are shut out forever.

 

 

 

IN OBSERVANCE OF THE 32ND ANNIVERSARY OF THE AMERICANS WITH DISABILITIES ACT

  WE PRESENT: FIVE EPIC ACCESSIBILITY FAILS IN MIAMI

Regulations in a book do little for me.

People cut corners, get lazy, ignore the rules, and fall short of standards. 

When this happens, access and essential mobility for residents who use wheelchairs can become impossible. 

Mayors, commissioners, planning boards, department heads, community leaders, and developers need to make access for all a priority. 

That’s what it takes, and we’re far from being there.

In my opinion, the public and private sector in greater Miami gets a C-minus when it comes to accommodating people with disabilities.

I fully confess that while I care deeply about inclusion for those with visual, hearing, and cognitive impairments, my expertise is through the lens of mobility impairments.

IN OBSERVANCE OF THE 32ND ANNIVERSARY OF THE AMERICANS WITH DISABILITIES ACT

 WE PRESENT: FIVE EPIC ACCESSIBILITY FAILS IN MIAMI

During a 40-year career, I’ve had the privilege to advocate for people with disabilities as a reporter, advocate, marketer, educator, speaker, and consultant. 

I’ve been even more fortunate to be married to my soulmate for 34 years.

My brilliant bride, a dedicated lifelong public servant, has used a wheelchair for
mobility since she started college in the early 1980s.

The U.S. Centers for Disease Control and Prevention states that one in four people will experience some degree of disability in their lifetime.

The Americans with Disabilities Act (ADA), which was passed 32 years ago this July, is landmark federal legislation that protects the civil rights of people with disabilities.

Because it affects the built environment, some people mistake it for a building or zoning code. But it is a law that passed Congress with bipartisan support in 1990.

MIAMI INTERNATIONAL AIRPORT NAMED THE WINNER

OF THE AIRPORT ACCESSIBILITY AWARD

Celebrating the prestigious award: Heidi Johnson-Wright with Miami International Airport ADA coordinator Jessica Marin-Urrea, Mayor Daniella Levine Cava and a host of Miami-Dade County elected/appointed leaders.

MIA was named the overall winner of the 2021 Airport Accessibility Award during the 6th Annual Airport PRM (Passengers with Reduced Mobility) Leadership Conference.

MIA earned 50 percent of the votes from the virtual conference’s 159 attendees from 42 countries.

BUTTES AUX CAILLES

 PARIS 13^TH ARRONDISSEMENT

The quaint area takes its name from Pierre Caille, who acquired the area in the 16th century.

It contains cozy bars, small restaurants, and the famous Place de la Commune-de-Paris.

Fighters from the Paris Commune repelled royalist forces during the Battle of Buttes-aux-Cailles. 

The area also is filled with graffiti-style street art, from small stencils to full murals.

It was fertile ground for the brilliant Miss Tic, a street artist who passed away this year.

CENTRAL PARIS

PHOTOGRAPHED FROM PLACE ITALIE

We love the livable urban village within a thriving metropolis feel of Paris’ 13th Arrondissement.

Place d’Italie has three major Metro lines for rapid movement about the city.

Just to the west of it is the ‘Quartier Asiatique’ -- home to the city’s principal Asian community.

The hilly La Buttes Aux Cailles, a village of lively bars, moderately-priced  restaurants, succulent boulangeries and a locals feel, is within the 13th.

We are charmed by the non-touristy backstreets and corner cafes.

SURVIVING CANCER

  RESOURCES FROM WHEELCHAIR USERS WHO ARE                    CURRENTLY BATTLING OR HAVE BEATEN CANCER

Paulsen is disturbed that hundreds of millions of dollars are raised for cancer research and treatment each year, but there are virtually no resources for people with disabilities — including accessible mobile mammogram trucks.

 “More women are succumbing to cancer because of their inability to get early detection, but nothing is being done to increase mobile and other screening opportunities for people with disabilities,” she says.

Her advice as a survivor?

“You’ve got to advocate for yourself,” she says.

“You’ve got to push, and if you’re feeling that something is wrong, don’t let your medical people talk you out of it …

 just keep advocating, keep bugging, and fight for your right to live.”

SURVIVING CANCER

  RESOURCES FROM WHEELCHAIR USERS WHO ARE                    CURRENTLY BATTLING OR HAVE BEATEN CANCER

Paulsen was worried the post-surgery inactivity might lead to muscle atrophy, but credits her athletic background and solid pre-surgery preparation with helping her stay strong.

“I had built up a lot of upper body strength and I had PT people coming in and helping me figure out how to reacclimate myself to moving,” she says.

Paulsen calls herself “very lucky” for being able to catch her cancer before it spread and treat it without chemo or radiation.

The whole process has opened her eyes to the disparities facing wheelchair users battling cancer.

SURVIVING CANCER

  RESOURCES FROM WHEELCHAIR USERS WHO ARE                    CURRENTLY BATTLING OR HAVE BEATEN CANCER

Paulsen found a proactive approach to educating nurses and doctors was needed before and after surgery.

Paulsen took it upon herself to educate the “professionals.” 

She explained all the areas she envisioned needing help and made sure the hospital provided them, including a Hoyer lift for transfers and visiting nurses to change dressings and manage drains.

Having the right equipment and services was key, as was having supportive friends and family. 

Her partner’s family had a lot of experience helping others recover. 

His mom is an RN and she even moved in to support Paulsen at home.

SURVIVING CANCER

  RESOURCES FROM WHEELCHAIR USERS WHO ARE                    CURRENTLY BATTLING OR HAVE BEATEN CANCER

“After the double mastectomy, they said you can’t use your arms for three months. I said, ‘What am I supposed to do as a wheelchair user?’” recalls Paulsen. 

“They said they never had a manual wheelchair user who had a double mastectomy.”

Their lack of experience almost cost Paulsen severely. 

“Because I wasn’t allowed to use my arms, they were trying to see if my mom, who was probably around 70, could transfer me out of the bed into the wheelchair,” she says.

“She dropped me and that was horrid because I still had open wounds.”

TV BROADCAST FOCUSES ON ADVOCACY FOR PEOPLE WITH DISABILITIES

WHILE RESOLVING A CONSUMER ISSUE

Thank you to Help Me Howard with Patrick Fraser for highlighting the advocacy my wife and I do for people with disabilities.

Resolving my driver's license issue is great.

But using positive language to portray the disability community is even greater.

We appreciate the opportunity to use this well-loved, long-running television segment to raise awareness of a more inclusive environment for those who use wheelchairs for mobility 

https://wsvn.com/news/help-me-howard/waiting-for-drivers-license-replacement/

https://wsvn.com/news/help-me-howard/waiting-for-drivers-license-replacement/

SURVIVING CANCER

 RESOURCES FROM WHEELCHAIR USERS WHO ARE                    CURRENTLY BATTLING OR HAVE BEATEN CANCER

“They say the worst thing about having cancer is knowing that you have it,” she says.

 “And I totally agree, because it is a stressor.” Paulsen opted for a double mastectomy.

 “Long story short, I got my implants, did all the cosmetic tattooing — I don’t ever have to wear a bra again,” she says, noting a sense of humor is key to recovering.

As a lifelong advocate for people with disabilities, Paulsen was shocked at how unprepared the medical professionals she dealt with were when she peppered them with questions about her recovery as a manual chair user.

SURVIVING CANCER

  RESOURCES FROM WHEELCHAIR USERS WHO ARE                    CURRENTLY BATTLING OR HAVE BEATEN CANCER

In November 2011, Meg Paulsen had just begun dating the man who would become her husband when he discovered a lump in her breast. 

She had no family history of cancer and had her annual mammogram in May.

Fortunately, the cancer was “the slowest growing, least aggressive type.” 

Still, Paulsen, who was born with spina bifida, had four lumpectomies on one side, and one on the other.

 “My oncologist said, we’re probably going to be doing these continually because it seems like your tissue is creating precancerous stuff,” says Paulsen, now 56.

SURVIVING CANCER

   RESOURCES FROM WHEELCHAIR USERS WHO ARE                    CURRENTLY BATTLING OR HAVE BEATEN CANCER

Roy’s activism and open sharing about her cancer journey are her coping devices.

She suggests joining SCI/D groups on Facebook and other social media platforms and connecting with survivors and people fighting your specific cancer.

“Staying focused on the gratitude for all the beautiful people in my life, work I am passionate about, and the ability to advocate for improved safety of catheters [is also important].

If I can help someone else prevent bladder cancer, this journey has meaning,” she says.

 “Take friends and family with you to treatment when possible. 

Reconnecting with the people I love has been the silver lining of my bladder cancer diagnosis. 

Work on keeping a positive attitude. Take care of your mental health as well as your physical health.”

SURVIVING CANCER

 RESOURCES FROM WHEELCHAIR USERS WHO ARE                    CURRENTLY BATTLING OR HAVE BEATEN CANCER

While undergoing treatment, Roy has expanded her advocacy to educating people about catheters and bladder cancer. 

“People with spinal cord injuries that do intermittent catheterization get irritations and increased incidence of UTIs that put us at higher risk for cancer,” she says. 

“I catheterized with products that turned out to have a carcinogen in them.” 

She’s referring to Di(2-ethylhexyl)phthalate (DEHP), which is commonly used in plastics to make them flexible and requires a consumer warning label under Proposition 65 in California because it “can cause cancer and birth defects or other reproductive harm.”

SURVIVING CANCER

  RESOURCES FROM WHEELCHAIR USERS WHO ARE                    CURRENTLY BATTLING OR HAVE BEATEN CANCER

Roy has found her doctors uniformly respectful of her disability but wishes they were more proactive in considering unique risk factors and concerns for people with disabilities. 

“My one criticism would be that nobody is bringing ways to mitigate my known risk factors, which include the fact that I will continue to have to perform intermittent catheterization and likely continue to have recurrent urinary tract infections,” she says.

Roy has kept her spirits up during treatment by devoting her time to advocacy and education.

SURVIVING CANCER

 RESOURCES FROM WHEELCHAIR USERS WHO ARE                    CURRENTLY BATTLING OR HAVE BEATEN CANCER

Karen Roy is a brand ambassador for Numotion and a passionate advocate for wheelchair users and people with disabilities.

The 53-year-old uses a wheelchair as a result of a gunshot wound while being robbed 34 years ago. 

She was diagnosed with bladder cancer in the fall of 2021.

She caught her cancer in the early stages but faces a long treatment regimen. 

She travels more than four hours from her home in Baton Rouge, Louisiana, to Houston, for treatment at the University of Texas MD Anderson Cancer Center. 

Roy receives a version of the tuberculosis vaccine that is injected into the bladder to break through the cancer cells.

The treatments take two hours and are done every six weeks.

THE AESTHETIC CITY PODCAST WITH RUBEN HANSSEN

UNIVERSAL DESIGN, ACCESS FOR ALL IN A HOLISTIC DESIGN APPROACH

I’m proud to be part of the Aesthetic City podcast -- sharing ideas on Universal Design with host Ruben Hanssen.

Beautiful, functional cities MUST serve all people of all abilities.

Thousands of planners, architects, engineers, urban designers, landscape architects, educators and elected officials have asked me to explain why Universal Design is essential.

The podcast also explains the difference between the Americans with Disabilities Act (which is federal civil rights protection, NOT a building code) and Universal Design (the best way to build sustainably, efficiently, flexibly and inclusively).

https://open.spotify.com/show/4cU3tcGKXiziKGuvfd3KIa

SURVIVING CANCER

 RESOURCES FROM WHEELCHAIR USERS WHO ARE                    CURRENTLY BATTLING OR HAVE BEATEN CANCER

Karp, 67, advises those with SCI/D to plan on feeling foggy-headed even when out of a cancer center and recovering at home. 

He was not advised of the severity of pain he would feel or the impact of pain medications. 

For the first time in his life, he felt some insecurity about his ability to function at home.

“On the positive side, the nature of the disability experience is we are adaptive beings,” he says. 

“We learn to advocate for ourselves. 

That couldn’t be more important for someone going through cancer treatment. 

There are so many choices to make, so many individual paths, and so many products and strategies that each person has to keep learning.”

SURVIVING CANCER

  RESOURCES FROM WHEELCHAIR USERS WHO ARE                    CURRENTLY BATTLING OR HAVE BEATEN CANCER

The radiation treatment also affected Karp’s ability to swallow, necessitating that he get a feeding tube.

“My doctor was right up front about it, and I’m glad he was because I’d be dead without it,” he says. 

“I still primarily get my nutrition through a feeding tube even after the CAT scan shows I’ve beaten this.”

Other side effects impacted his taste buds, spurred massive weight loss and left him weakened — a difficult thing for someone who is “rabid about my independence.” 

Karp typically drives himself, but says there were times when he needed to get a ride to treatment.

SURVIVING CANCER

  RESOURCES FROM WHEELCHAIR USERS WHO ARE                    CURRENTLY BATTLING OR HAVE BEATEN CANCER

“I had to train the techs who did the radiation treatment on some really important fine points about the transfer. 

People don’t understand that when you don’t have use of your legs, you basically are balancing on your butt,” he says. 

“Being upright is critical. As soon as I land, I need to be upright. 

If not, I feel like I’m falling forward, and that’s panic mode.”

Despite all his precautions and training staff to switch him from side to side every two hours, Karp developed a pressure sore that took months to heal. 

He advises those with SCI to be hypervigilant about protecting their skin during treatments.

SURVIVING CANCER

 RESOURCES FROM WHEELCHAIR USERS WHO ARE                    CURRENTLY BATTLING OR HAVE BEATEN CANCER

An American Cancer Society public relations official confirmed that there are no guidelines for treating physicians or support groups specific to people with disabilities.

The side effects from Karp’s cancer treatments hit him hard and led to some feelings of insecurity.

Knowing this, Karp proactively set out to ensure the time he spent in the hospital and receiving treatments would be as safe and comfortable for him as possible. 

He made sure there was extra cushioning on the tables where he received radiation treatments, and later in the process, as he lost some physical strength, he requested assistance making a safe transfer because the table was several inches higher than his seat.

SURVIVING CANCER

 RESOURCES FROM WHEELCHAIR USERS WHO ARE                    CURRENTLY BATTLING OR HAVE BEATEN CANCER

Gary Karp has a long resume as an architect, emergency management planner, internationally recognized public speaker, corporate trainer and the author of three books. 

On the heels of completing 35 radiation treatments over seven weeks, he can add throat cancer survivor to that list.

While you might think writing Life on Wheels: The A-to-Z Guide to Living with Mobility Issues would have prepared Karp, a T12 para, for his battle with cancer, his experience reveals a more disheartening truth.

“I have come across no resources specific to cancer and being a wheelchair user,” he says.

“I have not encountered another person in the course of this experience who also is paralyzed. 

Cancer treatment providers just don’t have a lot of experience with it.”

SURVIVING CANCER

RESOURCES FROM WHEELCHAIR USERS WHO ARE                       CURRENTLY BATTLING OR HAVE BEATEN CANCER

Cancer is an unforgiving opponent, and it definitely doesn’t pull any punches for wheelchair users. 

From early detection, to treatment, to recovery, wheelchair users face unique obstacles that can make an already difficult fight seem overwhelming.

Sadly, there’s no “easy button” to guarantee a quick and painless battle, but with the right preparation you can reduce the challenge and bolster your odds at a successful outcome. 

This serialized story shares tips, resources, humor and strategies from three wheelchair users who are currently battling or have beaten cancer.

ALL I WANT FOR INDEPENDENCE DAY

IS FREEDOM FROM ABLEISM

Ableism is vile, repugnant and a threat to people with disabilities.

It’s as insidious as racism

If you don’t know what it is, it’s basically nasty bigotry – but based on a person using a wheelchair instead of racism discriminating based on the color of skin.

I learned of a government department head emailing other department heads to warn that the "Americans with Disabilities Act office is on the warpath and picking on noncompliance."

The ADA protects basic civil/human rights.

Standing up for them is NOT on the warpath.

This mean-spirited and hateful alert sender serves hundreds of thousands of constituents.

Would he whine and push back on protecting civil rights based on race or gender?

Probably not.

So why are the human rights of people with disabilities constantly under attack?

RAINY NIGHT IN PARIS

ROUND ABOUT MIDNIGHT 

Winding down a 14-hour workday.

Lengthened by two hours of pre-dawn exercise.

Coming home to Art Nouveau splendor in 9th arrondissement.

The next day, a Universal Design roving workshop with the goal of visiting all 20 arrondissements, via walking no transit or car travel, within daylight hours of one day.