A discovery process in an ongoing federal lawsuit against the City of Chicago has revealed what appears to be an enormous abdication of the city and its Department of Housing’s duties to both the disabled community and federal law.
Documents turned over in the suit, which was filed by disability rights organization Access Living in 2018, have revealed across-the-board failures in inspecting, permitting, regulating and apportioning affordable housing units that were required to conform to federal accessibility law.
Plaintiffs allege that, since 1988, the city has used over $2 billion of Housing and Urban Development (HUD) funds to construct affordable housing complexes, comprising tens of thousands of units, that did not comply with these laws, including the Americans with Disabilities Act (ADA) and the Fair Housing Act (FHA).
For Chicago’s disabled community — as well as people with disabilities all across the U.S., who are regularly failed by governments and discriminated against by landlords — the ramifications of this decades-long failure amount to a bleak sum of poverty and suffering among a highly vulnerable population.
New Revelations of Neglect
Access Living is a Chicago-based nonprofit that advocates for disability rights through policy advisory, legal work and direct service with the community; most of its staff themselves live with disabilities. Known as a “center for independent living,” a type of community-based disability advocacy nonprofit, it’s one of many such organizations around the country. Over the center’s decades of existence, the single most prevalent request from the community has remained unchanged: accessible housing.
Progress on the matter has been scattershot at best. Speaking with Truthout, Access Living Executive Vice President Daisy Feidt noted that over her 23 years at the organization, the demand has not wavered. “We weren’t seeing this ever get solved in a way that we could see reflected in the day-to-day experience of the community members coming through our doors,” Feidt said.
The situation remained intractable despite advocates’ years of cooperating with the city in efforts to facilitate housing access and improve the standard of living for Chicago’s disabled community. Access Living eventually concluded that a more adversarial stance would be necessary to prod the city into instigating real changes, resulting in the 2018 suit. Multiple attempts by the City of Chicago’s counsel to have the case dismissed were rejected by a judge in 2019, and the suit proceeded — leading to investigations by expert witnesses that have now turned up remarkable failures.
Community members and advocates had their suspicions and could generally infer the scale of the shortage. Still, after legal discovery, “We were definitely surprised at the levels of noncompliance,” said Feidt. The records brought into evidence indicated near-complete failures in certain mandated practices and due diligence: chiefly in inspection, enforcement and distribution of units. When Chicago was allotted $2 billion in HUD funding for affordable developments, it was obligated to construct accessible units and comply with legal protections. HUD regulations under the Fair Housing Act lay out clear guidelines for abating discrimination, provisioning units and adhering to design requirements. Numerous other protections are stipulated under Section 504 of the Rehabilitation Act of 1973, the ADA, the Architectural Barriers Act, and other federal laws, on top of to state and local statutes. It was the legal responsibility of the city and its Department of Housing to adhere to them.
Chicago, resoundingly, did not. To begin with, the Department of Housing declined to construct a system that could notify people with disabilities or relevant organizations about available accessible units. In effect, disabled people were forced to hunt for suitable units on their own — which Access Living members have likened to “finding a needle in a haystack,” Feidt said.
The daunting, months- or years-long challenge of securing functional units regularly leads to severe hardships, including institutionalization and homelessness. “The situations that people have been in because of this are really dire,” Feidt commented. “We’ve had situations where people’s disabilities have worsened because they’re in housing that’s not accessible to them. People not being able to get out of their place. People being put in nursing homes, simply because they don’t have an accessible affordable housing option. That’s really common. We don’t even know how many of those folks exist.”
Constrained Independence
Angela Lacey was diagnosed with cerebral palsy when she was 2 years old. Her mobility issues worsened over time; in addition to spastic cerebral palsy with spinal stenosis, she also has arthritis and a hip replacement. Lacey, a lifelong Chicagoan, struggled for decades to secure accessible and affordable housing for herself and her two children.
As Lacey told Truthout: “People with cerebral palsy, we don’t move the way healthy people move. It becomes an issue. I have to live in a place where there’s an elevator. That’s tricky when you’re living on the South Side of Chicago. When the elevators don’t work. When you’re on the 15th floor and you can’t go down. If there’s a fire. These are things that… it’s just a lot. It’s a lot.”
Moving from unit to unit over the years, she encountered stairs, uneven ground, unsuitable bathtubs, too-heavy windows, slips and falls, and all manner of barriers. “My experience having two children and a disability, trying to find a decent area and an elevator building — it was hard as hell.” Unable to find an adequate apartment, at one point she nearly lost a 90-day housing voucher.
To this day, though she described her current unit as an improvement, Lacey still does not feel she’s able to live with full independence. Her frustration at the decades-long impasse led her to join and organize with Access Living. “Everyone’s got different stories, but it’s the same damn story,” she remarked. “There’s no accessibility out here. Nothing. Thirty years? That’s a long damn time for someone to say, ‘We see you. We hear you. We’re concerned. We understand.’ They don’t have a damn thing for nobody who’s a person with disabilities.”
Many others have had comparable experiences. Their dispossession is directly traceable to the city’s nonexistent enforcement. In addition to lacking a notification process for available units, the documents in evidence also pointed to a grievous lack of oversight. As summarized in an Access Living press release, the city “does not inspect completed buildings before issuing occupancy permits to make sure the units comply with federal accessibility requirements.” Despite periodic Department of Housing inspections on other measures, those inspections did not include accessibility compliance checks, though there was every opportunity to do so. And startlingly, over the course of the 34-year period in question, “the City has not sanctioned a single owner for noncompliance with federal accessibility requirements.”
Furthermore, investigatory assessments of nearly 200 affordable, HUD-funded developments found noncompliance in a full 100 percent of units surveyed. Expert witnesses for the plaintiff documented an enormous list of limitations, including inadequate ramps, counter heights, door thresholds, narrow hallways, steep stairs, bathrooms without handrails and unavailable parking.
In Chicago, the agency responsible for enforcement is the Accessibility Compliance Unit (ACU) within the Mayor’s Office for People with Disabilities (MOPD). Yet for nearly a decade, the ACU annual budget was capped at only $400,000. (The city has now spent twice that amount on defending itself against the lawsuit and attempting to have it tossed out.) Remarkably, it wasn’t until the Access Living suit was filed that enough funding was finally allotted to hire a single inspector for compliance review.
“This should not take a lifetime to do this,” said Lacey. “This should be done now. How long do we have to wait for things to get done? We marched, we talked, we all have stories, we went in front of powerful people. We had media coverage. And, nothing.”
“It’s frustrating,” she sighed. “They’re telling us they don’t give a damn about us. ‘Screw you. You don’t have any money, so get in where you fit in.’”
A Vast and Quiet Injustice
These issues exist far beyond the borders of Chicago. The tragic fact is that such excruciating struggles are the norm in the United States: Disabled Americans commonly encounter vast barriers to their efforts to secure a decent and dignified existence. Life in the U.S. already presents plenty of financial and bureaucratic challenges for those who are able-bodied; those with cognitive, ambulatory, vision, hearing or independent living difficulties can face dilemmas multiplied many times over.
By one count from the Technical Assistance Collaborative, there are 4,556,131 “Supplemental Security Income (SSI) recipients with disabilities between the ages of 18 and 64.” Those who manage to receive SSI (a challenging process in its own right, in which applicants are highly likely to be denied) can see this assistance shrink immediately as they attain any additional income or assets. Disabled people may also qualify for SSI as well as SSDI (i.e., specific disability benefits) concurrently; though the benefits are calculated differently, higher SSDI payments can reduce a recipient’s SSI income, or render them ineligible for the latter entirely.
Perhaps most egregiously, businesses are permitted to pay people with intellectual or developmental disabilities “subminimum” wages — averaging a mere $3.34 an hour. The subtext of this enforced poverty is clear: To capital, disabled people are simply worth less, as workers and human beings. This is the essential bigotry that runs beneath the discrimination and dehumanization faced by people with disabilities in the U.S. Ableism both arises in interpersonal relations and is structurally embedded in markets, the state and ideological apparatuses.
For these and many other reasons, disabled people very often find themselves with slim resources and in precarious circumstances. There does exist a patchwork of governmental, nonprofit, and other services, but it can be an exhausting effort for anyone, disabled or otherwise, to navigate the requisite thickets of paperwork and caseworker appointments and layers of bureaucracy.
In particular, means-tested programs — like SSI, government programs for which one has to prove one’s worthiness by demonstrating appropriate levels of impoverishment — necessitate burdensome applications and forms of proof. Some applicants describe being disbelieved and distrusted, made to feel like “leeches” and generally dehumanized in a system that seems intent on rooting out fraud. Some face further unfair treatment, like those whose disabilities and work readiness are assessed by judges who lack medical training. This is the reality for poor benefits applicants in the U.S., where bipartisan vigilance against supposed “welfare queens” (an invention of the racist imagination) has steadily unstitched the already-threadbare social safety net.
Even those “fortunate” enough to receive benefits are dismally unlikely to afford adequate housing with them. Advocacy organization The Arc reports that the 4.8 million people with disabilities who have secured SSI payments have an average income of just $9,156 a year — “low enough to be priced out of every rental housing market in the nation.”
Those who do secure housing but lack benefits often end up as renters with the status of what HUD calls “worst case needs”: very low-income renters “who do not receive government housing assistance and who pay more than one-half of their income for rent, live in severely inadequate conditions, or both.” According to figures from a HUD report to Congress, non-elderly people with disabilities are found in about 17 percent of worst case needs households. And more broadly, 2019 data from the American Housing Survey indicated that, of the total U.S. households that include someone with accessibility needs, a large percentage “live in homes that are not fully accessible … almost 4 in 10 reported that their homes currently do not have accessibility features such as entry-level bedrooms or full bathrooms.”
Writing in The Hill, disability activist Allie Cannington cited new research from the Urban Institute and advocate organization The Kelsey, which indicated that “22 percent of people with disabilities have extremely low incomes,” per HUD’s definition. Poverty is overrepresented among the disabled — and especially people of color with disabilities. To make matters worse, “More than 18 million disabled people who are currently housed are eligible for government assistance but are not receiving it, compounding already high barriers to affordable and accessible housing.”
As Cannington pointedly put it: “This new research illustrates the urgent need for action. People with disabilities are suffering the worst consequences of the affordable housing crisis. This situation is already a humanitarian disaster. Addressing it requires fully funding existing solutions as well as new models that allow disabled and non-disabled people to live side by side in equally high-quality, affordable homes in their communities.”
For the disabled, crises are impending on multiple axes. Many disabled people currently live with older caregivers, often parents — and as the latter age, their charges can end up warehoused in institutions or nursing homes. In the worst case, the grim alternative to even inadequate housing is homelessness. People with disabilities are vastly overrepresented among the unhoused; point-in-time population counts have estimated that on any given night, around one-quarter of unhoused people meet federal definitions for both having disabilities and experiencing chronic, sustained homelessness. Long-term illness, physical and mental disabilities, substance use disorders and developmental disabilities are found among the unhoused at rates far exceeding the rest of the population.
Systemic Abdication
Patterns of ableist discrimination, dehumanization, destitution and failures of accommodation and oversight are endemic within the United States. Access Living referred Truthout to a bevy of cases across the country that indicate the extent to which ableism is entrenched within U.S. housing.
A scattering of nationwide examples: last year, HUD, responding to a complaint, sent a case to the Justice Department that resulted in a lawsuit against two Missouri developers. Their complex in St. Louis failed to meet disability compliance under the Fair Housing Act and ADA. More recently, in Los Angeles, the Disability Rights Education and Defense Fund announced a suit against 22 housing operators for discrimination against a disabled man, refusing to rent to him because he intended to pay via Section 8 housing voucher. Less contentious — but just as burdensome for people with disabilities — was the fact that over 4,000 units of student housing at New York University were found to be out of accessibility compliance. A U.S. attorney reached an agreement with the university to update their facilities over five years, but the task will likely be slow and arduous.
Affordable, accessible housing is particularly difficult to come across for disabled people in Tennessee. The Tennessee Disability Coalition reports that, in 80 of the state’s 95 counties, housing is unaffordable for working disabled people. The state provides no state subsidies, only limited federal funds, for developers to build accessibly. Accountability is similarly in short supply, and inspection requirements are few. The inspections that do occur are conducted by private corporations; a general lack of enforcement allows builders to skirt regulations with ease.
Things are little different in liberal Vermont. The 8 percent of Vermonters with a mobility disability encounter largely archaic housing (with roughly 75 percent of housing stock built before 1990) that lacks modern accommodations. Many describe the sheer impossibility of locating suitable units.
In deep-blue San Francisco, where infamously explosive rent increases have driven huge numbers of people out to the streets, 23 percent of residents are either elderly or disabled, both groups that are likely to be on fixed incomes and require substantial housing assistance.
These ubiquitous difficulties, Angela Lacey says, constitute a national shame. She wants the world to understand this. “Yes, I want to embarrass Chicago. Yes, I want to embarrass the state of Illinois. And then I want to embarrass the whole United States. Cause I’m 100 percent sure Chicago’s not the only one.”
A Loss for Society
The issues at hand are deeply rooted in U.S. infrastructure, finance, law and culture. “This is a nationwide problem,” said Daisy Feidt. “It’s an issue for almost every other center [for independent living]. And the same issues apply, with government not overseeing housing correctly or making sure they’re following accessibility laws.”
It’s both a grave injustice and a loss for society as a whole for basic amenities to remain so segregated. As Feidt said: “We’re about people with disabilities being a part of all aspects of society. If people with disabilities don’t have access to affordable accessible housing, that’s kind of foundational.… People need affordable accessible housing to even start the conversation about what job opportunities could be available.”
Referring to the Access Living lawsuit, Feidt continued, “That’s what the case is about — trying to solve it on a systemic level for folks, [to have] systems in place and policies in place to make sure the housing that is built in the affordable housing program meets accessibility requirements in the future.” People with disabilities “offer a lot,” she says — and it’s to everyone’s detriment that their humanity is walled off from so much of the world. “It’s not just people with disabilities who lose in that equation. It’s people without disabilities who also lose.”
Even on the left, ableism is an often-ignored vector of inequality, despite the desperately grave situations that millions of Americans find themselves in each day — discrimination, impoverishment, homelessness or institutionalization; the loss of one’s health, well-being or life. With a sense of resignation, Lacey said, “It’s the reality that we deal with every day. This is every day. And it’s scary, because some people are homeless. Some people have to stay with people, and they have no choice. They may be in a dangerous situation … but we stay with them because there’s nowhere else for us to go.”
Still, despite years of frustration, Lacey says that working with Access Living gives her hope. “Spiritually, I feel like [Access Living] was a godsend. Because the word is getting out. Our truth is being told.… People see us, but they don’t know our story. Now, there’s a story.”
“I’m gonna keep talking until I can’t talk anymore. Because it’s important.… As we say at Access Living, housing is a human right. It’s the right to live comfortably. Safe. Secure. In a place that we call home.”
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