By Holly Pablo
Ethan Bailey probably knows the San Diego State University campus better than his fellow students. He may even know the lay of the land better than the faculty members.
The 21-year-old junior journalism major uses a power wheelchair to explore and navigate campus. The motorized device wheels him through campus at speeds up to six miles an hour– arguably faster than the average person’s normal walking pace. Unlike standard power chairs, his device has specialized controls at shoulder-level.
That’s because the Santee native was born with thrombocytopenia with absent radius, a rare genetic disorder, known as TAR syndrome, that is characterized by the absence of the radius bone in the forearms. In addition to the deformities in his arms, he was born without knee joints, causing both legs to be backward and twisted. After several surgeries as a young child, he underwent his first leg amputation at age 13. In January 2012, the other leg was removed. Although he is fitted with prosthetic limbs for walking, getting around campus on his wheelchair is faster. Finding his way through the maze of a university, however, was challenging at first.
Now, Bailey knows the campus quite well. After transferring from Grossmont Community College in August 2012, Bailey took the time to learn the accessible routes to and from the trolley station and his classes.
Though speed is on Bailey’s side, navigating the campus topography has not been without difficulty. Sometimes an elevator is out of service, and he has to spend extra time finding a detour.
But Bailey is used to these curveballs. He said it’s just “the nature of being disabled.”
Ethan Bailey, a 21-year-old journalism student at San Diego State University, describes how he copes with a rare genetic disorder that has severely impacted his arms and legs.
Equal access for all
One year before Bailey was born, former president George H.W. Bush signed the Americans with Disabilities Act of 1990 into law. Stemming from the Civil Rights Act of 1964, the law prohibits discrimination against persons with disabilities in matters such as employment, and ensures right of access to public entities and commercial facilities.
The ADA defines a disability as a “physical or mental impairment that substantially limits a major life activity.” It could be visible or invisible, and caused by myriad of reasons such as genetics, injury or illness. According to “Americans with Disabilities,” a report by the United States Census Bureau, more than 56 million individuals reported living with a disability in 2010– nearly 19 percent of the national population.
Despite the rising number of people living with disabilities, understanding and implementation of the ADA is still in its infancy, and arguably still has a ways to go.
President Barack Obama announced revisions to the ADA standards on the 20th anniversary of the civil rights law in July 2010. The revision includes updated regulations and standards by the U.S. Department of Justice.
The regulation included updated standards for construction of new buildings that would help cater to people with disabilities. It includes the design of doors, windows, elevators and bathrooms in publicly and commercially accessible facilities. It applies to places such as stores, restaurants, hotels, schools, hospitals and state and local government facilities.
Although the revised regulations for building standards became effective January 2012, even some public officials are unsure about what is covered by the revisions.
The city of San Diego hosted the National Association of ADA Coordinators’ fall convention in October 2012. Much of the program centered on learning about the changes.
Confusion about changes for local swimming centers
In his 2010 announcement President Obama said the changes would specifically cover recreational facilities like amusement parks, gyms and swimming pools.
The city of San Diego is working toward getting 13 public swimming centers compliant with the updated law.
As part of Obama’s revisions, all existing public and commercially accessible swimming pools, wading pools and spas must be equipped with permanently fixed chairlifts or ramps at each body of water by Jan. 31. The regulation does not apply to private clubs. It also does not affect homeowner’s associations, which fall under the Fair Housing Act’s umbrella of private residences.
ADA advocates say the permanently fixed chairlifts help people feel more independent in getting in and out of the water, as it is typically remote-operated and requires little to no assistance from staff.
The Department of Justice originally set a deadline for compliance of March 15, 2012, but the deadline was extended twice: first to May 15, then to Jan. 31, 2013. The department decided more time was necessary for pool owner-operators to understand the applicability of the law and initiate installation of the lifts, according to a May 21 publication in the Federal Register.
The city of San Diego’s aquatics director, Don Crockett, said determining what each pool needs has been a confusing process because of some obscure language within the legislation. The pools currently have portable lifts that can be wheeled out for use. The team is planning to order 17 lifts at approximately $6,000 each, and is also looking into installing ramps.
Some of the city’s pools were originally built in the 1970s, so the upgrading process has been ongoing. Much change has happened within the last 7 years, Crockett said.
Water exercises as pain relievers
The ADA’s assurance of reasonable accommodation is familiar to Kathy Castello, a pool manager at the Ned Baumer facility housed on the Miramar Community College campus in Mira Mesa.
Castello currently teaches a few adaptive swim courses to autistic children and adults with physical conditions such as arthritis. Water exercises helps people gain self-confidence, she said, and for older adults, it works out every muscle of their body in the warm water environment by getting their blood pumping.
In Castello’s more than 26 years of experience working with individuals with disabilities, she has seen firsthand the updates and improvements to try and foster environments where people with disabilities can help themselves.
Elsie Zala was diagnosed with arthritis more than a decade ago. She explains how water exercises soothes her joints in ways that land activities cannot.
People who were born with disabilities are more adjusted to their limitations than someone who becomes disabled later in life, Castello said.
When it comes to working with the city, she said doors at the facilities have been re-weighted to be lighter, or they have installed more actuators to help people using wheelchairs get through doorways.
The staff is trained to use “individual first language” when talking to visitors.
“You don’t call someone with a disability disabled,” Castello said. “That’s not who they are. People are not defined by their disability.”
In her experience, staffers are becoming more adept at handling the ADA mandates.
“It used to be intimidating for both staff and the people with disabilities to interact, but now it is becoming more widespread and accepted,” Castello said. “We are more aware to their needs than we used to be.”
While the Ned Baumer facility houses a portable lift for people who need help getting in and out of any of their three pools, Castello does not want people to become dependent on them. The lift has even been refused by some disabled people.
“There have been times where we’ve offered the portable lift and they say, ‘I don’t need that handicapped thing,’” Castello said. “But there’s also been times where people only want to use the lift, and that’s fine, too. We just have to make sure that we are not stigmatizing them by pushing these devices onto them.”
How the law will be enforced
The federal government is not actively pursuing violators of the new law.
DOJ press assistant Mitchell Rivard said businesses do not have to report their compliance to the department or any federal agencies. Rather, enforcement is accomplished through legal complaints or by people filing complaints with the DOJ.
The department may investigate or initiate a compliance review. If the department investigates and cannot reach voluntary compliance, the department may file a lawsuit. In a DOJ investigation, a first violation can cost up to $55,000 in damages and civil penalties and $110,000 for subsequent violations.