Texans With Disabilities Physically Barred From Policymakers

Illustration by Jason Stout / Thinkstock

Kenneth Semien Sr. stands on the Texas Capitol steps in early April. This is not the government building in which he was advised to spend his time. In these hallowed halls, legislators decide public policy. Semien's doctors recommended a different facility – a state supported living center – where staff would make decisions for him. But after losing his sight and the hearing in his right ear, Semien was not willing to forfeit his independence as well. Instead, he stands for himself and thousands of Texans living in such centers, wearing a black suit and a pressed white shirt.

Gathered around and behind Semien on a sweltering afternoon are more than 300 people. Some sit in wheelchairs, others stand with guide dogs. Different impairments, a common cause: They are participating together in the Don't Myth With Texas rally to raise awareness about the individuals with disabilities' struggle to be involved in daily life.

"People with disabilities can't live in the community," an activist quips into the microphone. "Myth!" Semien shouts in chorus with the crowd.

"That's right! We're here today to remind our legislators – don't myth with Texas!"

People cheer as the rally concludes. Semien, wearing dark sunglasses, slides his white-tipped cane over the granite landing. "We came to the Capitol to educate," he says. "It's not that lawmakers don't want to do good. It's that they don't know our needs."

But there's a problem: Physical barriers throughout the Capitol grounds prohibit Semien and others with disabilities from fully participating in the political discourse that takes place within the building. The cause they came to champion – greater inclusion in public places – is underscored by these accessibility challenges. As the sun set on the 85th regular session in May, legislation that was either passed or rejected outright signaled a clear pattern: Issues pertinent to the disability community were routinely decided without much input from those directly affected. A bill to review the effectiveness of state supported living centers did not pass. A proposal to increase the base wage of community attendants gained no traction. Only a fraction of the proposed special education bills were approved. In many cases, individuals who wanted to testify were late or lost – waiting for an overcrowded elevator or searching for an accessible entrance to the Capitol building.

The lack of access at "the people's house" is mirrored throughout the capital city. Austin, founded in 1839, is home to 180 nationally registered historic landmarks and sites. Its identity is in many ways tied to these historic features. But history has not favored inclusion in those spaces for people with disabilities. In fact, they have been routinely excluded from public places (for instance, students with physical and mental disabilities attending institutions instead of public schools), and many of the places that typify the city also raise a relevant question: How can Austin preserve historic features while also embracing a modern approach to accessibility? City officials and disability advocates alike acknowledge this endeavor is possible, albeit quite expensive.

The question is not whether or not to spend money on "disability issues," but to what end. Factors include renovating buildings (the state invested $200 million in improvements to the Capitol in the early Nineties); investing in care – whether in state-run facilities (at around $26,000 per person every month) or home-based settings (at about $4,000 per person each month); and empowering individuals to contribute to a robust economy.

A critical and currently lacking component to ensuring inclusion for all is a buy-in from the wealthy and powerful. "Disability issues" are continually swept under the rug and cut out of the budget – in the last session, legislators opted against reducing the waiting list for community-based services and failed to pass school finance reform, which would have positively impacted students with disabilities. Some saw Gov. Greg Abbott's rise to political power as a beacon of hope for the disability community. But in reality, Abbott – the first Texas governor to use a wheelchair – offers a prism into lawmakers' hesitation to advocate for universal access and community-based support.

Your Basic Human Rights

Fifteen years ago, Semien lay in a Houston hospital bed listening to doctors advise a lifetime of naps on a twin bed and meals in a cafeteria. He was recovering from an 89-day bout with meningitis. "It came upon me suddenly," he said. "In the morning, I was seeing. By the afternoon, I was blind." Doctors said he would never be able to live on his own. Against their advice, Semien refused to be institutionalized and instead entered rehabilitation. He is now the president of the Texas chapter of the American Council of the Blind.

"I don't think I would have survived if I went to an institution," he said. "Now, I've learned so much about the possibilities of how to succeed and live on my own."

Historically, to be disabled is to be excluded. However, when possible, people with disabilities seek to live in the community with full access to public places. The demand for a path toward inclusion is now at an all-time high. Across the state, more than 113,000 individuals are on a 14-year waiting list for community-based services, according to the Arc of Texas, a disability rights group. There is no waiting list for state supported living centers; the 13 facilities currently serve just over 3,000 people total. In Austin, more than 180 individuals with disabilities or complex health needs live in the 100-year-old center, many of whom have been in residence for 15 or more years.

For some, a state supported living center or nursing home is the best choice for their care. But the vast majority seek to live in the community with minor to moderate home-based support. This type of care empowers many to work, contribute to a robust local economy, and pay taxes. Even within the disability community, the debate about institutions is contentious and far from settled.

In 1990, President George H.W. Bush signed the Americans With Disabilities Act (ADA), a broad civil rights law that prohibits discrimination against people with disabilities. The crowd that gathered for the signing was one of the largest in White House history. Many in the disability community believed that their physical segregation – in schools, institutions, and public places – was coming to an end. But 27 years later, barriers remain in place that reinforce subtle but significant discrimination. These barriers include a lack of accessible entrances and exits to buildings, elevators that do not audibly announce floor numbers, city sidewalks that are cracked or that simply end in impassible grass, and town hall meetings that do not offer closed captioning for the hearing impaired.

"You don't expect to find issues like this anymore," said Chase Bearden, a director with the Coalition of Texans With Disabilities. "Yet, we still continue to have to fight for basic rights."

Chase Bearden (Photo by Taylor Jackson Buchanan)

Bearden, now 39, spent 17 years of his life enjoying unrestricted mobility and athleticism. A competitive gymnast, he was paralyzed in a "freak accident" the week before his senior year of high school. "Disability touches all of us at some point in our lives, whether through a family member, friend, age, or accident," he said. "It can happen anytime."

Hands protected by black cloth grips to prevent blisters, Bearden left his Downtown Austin office on an afternoon in May and pushed himself in his wheelchair to the Capitol. The director of advocacy talked about his work, seeking greater inclusion of the disability community both in the building itself and society more broadly. "I'd be happy to work myself out of a job," he said. "There are other things I'd like to do with my life."

And yet the road to progress – and to the building itself – is riddled with physical obstacles. In Downtown Austin, sidewalks and crosswalks present significant challenges for individuals who use wheelchairs. Tree roots break up through the concrete. The buttons to activate crosswalks are located too far from the sidewalk to be reached from a wheelchair. At times, the sidewalk simply ends. Bearden has to push his chair on the street for a block or two near 18th and San Antonio streets.

The city is aware of the sidewalk problem. The robust Sidewalk Master Plan/ADA Transition Plan, adopted last June, earmarks 39 miles of sidewalk for repair (or first-time installation) every year from 2018 through 2027 at a cost of $25 million per year. Austin has about 2,400 miles of sidewalks already – many of them sorely in need of repair – and the plan calls for an additional 2,580. Following ADA requirements, Austin officials regularly review existing infrastructure (sidewalks, curb cuts, audible crossing devices, and bus announcements) and makes plans to correct accessibility issues. David Ondich, Austin's ADA coordinator, said, "It's very, very, very expensive to make our city universally accessible."

As Austin grows, so does the amount of money required to ensure everyone has access. Ondich said the city tries to find a balance in "being thoughtful in design and maintaining the culture, look, and feel, and brand that Austin brings."

Despite the challenges, Austin is considered one of the more accessible cities in the state. A 2016 WalletHub survey of the 150 most populous cities in the United States considered economic factors, quality of life, and health care. By these metrics, Austin ranks No. 2 in Texas, behind Plano, and 41st in the nation. These statistics underscore the vast amount of money and effort needed, especially in Texas, to make inclusion a reality for all, from public parks to doctors' offices and city meetings.

Aesthetics Over Texans

Peeking over the skyscrapers and condominiums Downtown is the magnificent Capitol building. Constructed in the 1880s, the architecture stands as a product of its time – a monument to segregation based on ability. The building, with its heavy doors, narrow hallways, and dizzying flights of stairs, was not intended to be accessible for all, Bearden reminded on our walk. Modern legal standards perpetuate this exclusivity, making exceptions for historic buildings, with less stringent requirements for accessibility.

In August 2014, the Coalition of Texans With Disabilities filed a report that outlines common barriers at the Capitol. The report was created to "pave the way for greater inclusion of all Texans to participate in their government." Two-and-a-half years later, the advocacy group says few of the requested changes have been addressed, and the situation at the Capitol jeopardizes the civil rights of millions of Texans.

The narrow ramp wheelchair-bound Texans must navigate to enter the Capitol's North doors (Photos by John Anderson)

The State Preservation Board and the Texas Facilities Commission maintain the Capitol complex. According to the SPB, the Capitol is compliant with state accessibility standards, established in 1994. Renovations were completed to ensure "accessibility was an integral part of design," said Chris Cur­rens, the board's special projects manager. Five years ago, the state revised its standards; however, the revision left many structures in place, a product of grandfathering. Accessibility updates were not required if they met the standards set in place in the early Nineties.

Individuals like Chris Botello say the disability community remains marginalized by an overemphasis on preserving the design of a historic building such as the Capitol. Botello participated in the Don't Myth With Texas rally, sitting in a black wheelchair some 50 feet from Semien, his legs fastened in braces patterned with the American flag. Botello pointed at the grand, historic Capitol building. "Is there any way for me to get up there?" he asked. Thirteen granite steps blocked his path; there was no ramp in sight. The main entrance to the building is not accessible for individuals with mobility impairments.

Architect Kevin Koch said that in the Nineties he and a team worked to ensure the North entrance to the building is "gracious, elegant, and completely compliant." But for those who have long had to "use the back door" in public places, Bearden says the state is routinely "choosing aesthetics over Texans."

This is not the only barrier Texans with disabilities report when seeking to actively contribute to the legislative process. A lack of protected, proximate parking spaces often deters individuals with mobility impairments from showing up at all. The grounds are confusing and poorly labeled – signs are scarce and their absence further obscures the few accessible entrances, routes, and elevators. There are no family restrooms in the building, which complicates the process of transferring an individual from a wheelchair to the toilet. Overcrowded elevators thwart individuals in wheelchairs from the access they need to meet with a legislator or attend a hearing. Elevators do not announce the floor on which the doors open, preventing individuals with visual impairments from navigating the building independently. Many in the hearing and visually impaired community have reported issues with closed captioning of hearings and registering their positions on iPads that lack accessibility features.

While technology has advanced to provide options for navigating independently – Braille, large print, tactile, and audio options – maps and handbooks with legislators' names and office numbers remain inaccessible for individuals who need these accommodations. Such exclusionary practices create an unwelcoming environment, cause individuals to be late or lost, and discourage people from returning to participate in the future. "The disability community has to actively advocate accessibility issues at our very inaccessible Capitol," said Jeff Miller, policy specialist at Disability Rights Texas. "When you run into all these barriers, it's easy to think that your voice isn't going to mean anything."

For the Man With No Way In

Demographically, the disability community is one of the lowest-income groups within the state. More than one in 10 Texans lives with a disability. Nationally, nearly four out of five individuals with disabilities are not participating in the labor force, compared to one out of three individuals without disabilities. Of those who are employed, they earn less than nondisabled peers with the same level of education.

"If you have enough money, you can get around the issue of accessibility," Bearden said. "It costs a lot – every chair, cushion, urological – it costs money to go to the bathroom! You get nickeled and dimed."

Facing a disability and the complications of poverty, a person is usually focused on daily tasks like finding transportation to an appointment, a job, or a meal. Overlapping impediments often dissuade people from political participation altogether – whether voting, testifying, meeting with a legislator, or running for office.

The slim entrance to a Capitol elevator (Photo by John Anderson)

However, when money is abundant, living with a disability is not as challenging. The governor's rise to political prominence is seen by many in the disability community as less a victory for the cause of inclusion and more a byproduct of his multimillion-dollar injury settlement. Meanwhile, nearly one in four disabled Texans lives below the poverty line, a reality rooted in the historical segregation of individuals with physical, mental, and emotional impairments.

As attorney general, Abbott more than once waged legal war against the ADA, and in his capacity as governor has repeatedly opposed Medicaid expansion, a vital support service for people with disabilities. Today, Texas has the largest coverage gap in the country, with around 684,000 residents ineligible for Medicaid and also ineligible for premium subsidies to offset the cost of private coverage. "That's a way he could be helpful to his community," said civil rights attorney Jim Harrington. "But he got a huge settlement out of his accident, and he doesn't face the poverty that most people in the disability community face."

At 26, Abbott was struck by a falling oak tree while jogging and was left partially paralyzed. Months of arduous rehabilitation sessions helped him relearn how to open doors, get dressed, and brush his teeth. He later sued the owner of the Houston property where the tree fell and won an enormous settlement, reportedly more than $10 million.

Bearden says Abbott has missed opportunities to become an advocate for people with disabilities. Harrington told the Chronicle that once, when Abbott was on the Supreme Court of Texas, he was at a conference in a Houston hotel that lacked accessibility features. He said the former justice reached out to Harrington for assistance. The attorney encouraged Abbott to talk about his experience publicly, so people could see a prominent political figure still faces certain accessibility issues. "He wouldn't do it," Harrington said. "Abbott refused to speak about it publicly. He wanted the help for himself, but he wouldn't be the advocate for the community."

Abbott did not respond to repeated requests for an interview, but he has said previously that he tries to refrain from "public posturing." Although, the Texas Tribune reported in 2015 that Abbott acknowledged the need for greater accessibility in the Capitol in an email to his staff. "I already have a way in," Abbott wrote. "It [is] the common man in the wheelchair who doesn't have a way in." The governor's email said he couldn't "give the disability activists all they want," likely a reference to the 2014 Capitol Accessibility Report. But by proposing a plan for a ramp leading to the main entrance of the Capitol, he said he could give them "a really good gesture."

Abbott's "really good gesture" was never installed, and the iconic main entrance to the building that stands as a symbol of democracy is still not accessible for individuals with disabilities.

Ability is another form of privilege, not unlike race and gender. To be able-bodied is to have the luxury of not noticing barriers that prevent others from participation in public places. In the absence of full ability, wealth and power can compensate. Knowing one's rights, an attorney to call, and a staff to provide accommodations can insulate a white man with a $10 million settlement from experiencing the day-to-day realities other people face. "Often, you'll find that an individual who acquired a disability later in life doesn't want to be the torchbearer," said Bearden. "I've never seen [Abbott] as a potential savior of the disability community. I just want him to serve all Texans, and that includes Texans with disabilities."

"The Governor Agrees With You"

On the afternoon of the rally, some 53 days before the regular session's end, Semien and 11 other advocates sat on stiff chairs and couches in the Governor's Public Reception Room. Drew DeBerry, policy director for Governor Abbott, and M.C. Lam­beth, Abbott's adviser for aging and disability services, were late. The advocates had 15 minutes to pitch four major policy priorities to Abbott's staff.

They wanted a re-evaluation of state supported living centers, state assistance for the 100,000 people waiting for disability services, and better pay for the men and women who work as attendants – bathing, feeding, dressing, and driving those who require assistance. Succinctly, they wanted state support to be directed toward integration into the community.

The notably wheelchair-less portrait of Greg Abbott in the governor's Public Reception Room (Photo by John Anderson)

As they waited, one man said the room made him feel like he'd been swept back in time. "Miss Scarlett might walk in any minute," he said, in reference to the Thirties-era Gone With the Wind feel. The room is ornate, with a gold chandelier, grandiose, dark wooden window frames, and blue and purple tasseled, triple-looped curtains.

DeBerry and Lambeth entered the room, shook hands, and remained standing, aloof, as the advocates took their seats. Independent living takes the burden off taxpayers, Medicaid, and other systems, they said, referencing statistics to underscore their arguments. DeBerry flipped through a folder provided by the Coalition of Texans With Disabilities, and Lambeth nodded her head as she listened.

"The governor agrees with you," DeBerry said in response to the request for increased attendant wages. In the 84th legislative session, Abbott did support raising attendants' wages, from $7.86 per hour to just $8. Advocates were hoping for an increase to $10. Attendants' wages in Texas remain among the lowest in the nation. The disability community is now asking for a bump to $13 per hour for the people who, in many cases, help make their lives livable.

That's when the 15 minutes ran out. DeBerry said he'll "look over this information" and closed his folder. The meeting promptly concluded.

The departing group struggled to open the old, heavy wooden door. A framed photo of Abbott peeked over their shoulders on their way out. He's wearing a red tie, with the Capitol building looming behind him. The photograph is cropped at the chest. Abbott's wheelchair is not visible.