“Free OUR People (But Not THEM)”: How #BigDisCo ‘s Institutionalized Bias Upholds the Institutional Bias they Pretend to Fight
- Reyma McCoy Hyten
- Apr 7
- 5 min read
Updated: Apr 10
"It's my body that's disabled, not my mind." -Judy Heumann
#BigDisCo leadership has decried recent actions initiated by the Trump administration through shuttering of the Administration for Community Living (ACL) as moves that will lead to more people with disabilities experiencing institutionalization.
That is partially true.
The complete truth?
More white people with disabilities will experience institutionalization.
Meanwhile, Black and Brown disabled people, as well as white people with significant intellectual/psychiatric disabilities, have been hidden away in congregate settings at rates disproportionate to that of white "it's my body that's disabled, not my mind" disabled people all along – regardless of the political party at the helm.
Red or blue, this is true; take Illinois, for instance. Despite the fact that it consistently swings to the political left, Illinois is 47th in its spending on community-based services and supports that promote the inclusion of people with disabilities in the community. As a result, Illinois is third in the nation for institutionalizing disabled people and first in the nation for institutionalizing disabled people in congregate settings where six or more people reside.
The US Department of Justice (DoJ) recently re-launched a probe to investigate the abuse of institutionalized people in Illinois. Despite the promises made by the state at the conclusion of a previous probe, institutionalized people with disabilities in Illinois, specifically those who are institutionalized at Choate, are still being subjected to sexual abuse, physical abuse, emotional abuse, and myriad other forms of mistreatment in the state’s facilities for individuals with significant developmental disabilities. Illinois Governor Pritzker’s response to this:
The “work” in question includes:
-installation of cameras at state-run institutions
-transition of residents at red-flagged institution to other state-run institutions
The “work” does not include:
-supporting institutionalized individuals to transition into living in the community
-A resident at Shapiro reported that their genitals had been beaten with a belt buckle
-a resident at Murray who died of cardiac arrest, was determined to have drunk toilet bowl cleaner beforehand
-residents of Ludeman who were institutionalized with the rationale regarding a need for extensive supervision have, nevertheless, eloped, including an individual who was found wandering on a six-lane street
Employees of many of the state operated developmental institutions in Illinois who have been known to abuse residents have been, nevertheless, allowed to maintain employment.
Demographic information pertaining to developmentally disabled people in Illinois is as follows:
Illinois DD Institution, Location/Program* | # of Participants | Black % | Latine % | White % |
Ludeman, Park Forest | 335 | 40 | 5 | 53 |
Kiley, Waukegon | 198 | 18 | 6 | 70 |
Shapiro, Kankakee | 474 | 25 | 4 | 70 |
Murray, Centralia | 243 | 17 | 1 | 80 |
Choate, Anna (UNDER DOJ INVESTIGATION) | 253 | 28 | 2 | 70 |
Mabley, Dixon | 108 | 11 | 7 | 80 |
Fox, Dwight | 77 | 12 | 4 | 83 |
ICF-DD | 4609 | 14 | 3 | 77 |
DD Adult Waiver | 21827 | 20 | 6 | 66 |
DD Children’s Residential Waiver | 198 | 10 | 5 | 42 |
DD Children’s Support Waiver | 1040 | 7 | 5 | 27 |
Waiver Waiting List** | 15905 | NA | NA | NA |
Illinois Racial Demographics |
| 14 | 18 | 58 |
*source: IL DHS
**source:KFF
The extensive “disability led” advocacy networks present in Illinois, including the ACL-backed Independent Living network and the state-level chapters of National ADAPT that operate within the state have said nothing about any of this.
The issue (as well as #BigDisCo ‘s neglect of the issue) isn’t limited to Illinois, nor is it restricted to state-run institutions. In the years following the 1999 Olmstead Decision, the institutionalization rate of white individuals in nursing facilities throughout the US dropped by ten percent while, perversely enough, the rate for Black people increased by eleven percent; for Latine people, the rate increased by a whopping 55%. According to the National Institute on Health (NIH):
The potential source of the differences seen in the growth of NH (nursing home) use among older adults with racial or ethnic minority backgrounds has been shaped by two overarching factors: (1) persistence of patterns of racial/ethnic residential segregation and the consequence of increased limited access to alternative-based LTSS (e.g., disparities in access to assisted living), and (2) the persistence and regulatory tolerance of patterns of racial discrimination (e.g., discrimination by facilities in admission practices).6,16-19 While there has been considerable research on the disparities Black and Hispanic older adults experience while receiving NH care and existing work examining the growth in NH use among this population has focused on societal or population-level factors (e.g., Medicaid reimbursement and residential segregation), little is known on a patient-level about LTSS need between White and Black and Hispanic older adults across settings that may point to a disparity in unnecessary nursing home use. This is particularly important when the same NH care could be delivered in the home and community with appropriate access to resources, services, and supports which all communities should have.
Lois Curtis, A Black woman with intellectual/psychiatric disabilities, as well as the namesake for the Lois Curtis Center and one of the plaintiffs who brought Olmstead to the US Supreme Court, herself experienced chronic institutionalization in the years following the Olmstead Decision. “Free Our People” never pertained to her or those like her. This was brought into shocking focus in 2020 during the height of the COVID-19 pandemic, when congregate settings with predominantly melanated populations experienced infection rates that were at least double that of similar facilities with mostly, if not exclusively white populations.
#BigDisCo has always pushed for a movement that prioritizes and creates a system that centers middle and upper class white children and adults whose are disabled in body, but not in mind. The Americans with Disabilities Act (ADA) is not intersectional. Neither is the Olmstead Decision. These historic civil rights developments offer no protections to individuals who experience barriers accessing disability services that are rooted in racism. Efforts further entrench and reinforce the rights extended in the ADA and Olmstead such as the “LaTonya Reeves Freedom Act,” (which is, in fact, the Disability Integration Act cloaked in a DEI shroud, a bill whose viability was very nearly permanently destroyed as the result of a xenophobic incident that occurred in CA Congresswoman Anita Eshoo’s office in 2019. In the interest of both distancing the bill from that scandal and wanting to take advantage of cultural trends regarding intersectionality during the Biden administration, the bill was re-named after Ms. Reeves, a Black woman who has since died and can no longer dictate how her name and story are used- or exploited. We at the Lois Curtis Center fully anticipate that, should the bill be reintroduced during the Trump administration, it will occur with yet another name change, further illustrating how fickle #BigDisCo’s “commitment” to racial inclusion actually is) ignore existing institutional racial biases, offering melanated disabled folks the chance to have their experiences of disability validated as they languish in institutions of all kinds. And #BigDisCo’s fervor to “free our people” shows time and again that institutionalization is only worth fighting against for a very specific demographic of “our people.”
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