Morrison’s Space: A DeafBlind Activist

A Broken System: How a 1990s ADA, Data Bias, and Fake Allyship Fail the DeafBlind Community

July 20, 2026

By Morrison

Nothing about us without us. This motto, this month, and this whole year feels like it has completely lost its meaning. Honestly, it has felt that way for a long while. Corporations, organizations, institutions, and agencies are all talk. They just let us sit at the table as a token, board member, or a consultant for a one-time consultation. They have us participate in a town hall meeting or a meeting hosted by them just to “collect” input and feedback, yet nothing changes. It’s just another meeting with no promises, no end goal in sight.

And no pun intended coming from a blind person here, but transportation continues to be completely inaccessible for many of us with disabilities – especially those of us who are DeafBlind, and it is unsafe, unequitable in design, too. Workplaces don’t truly interpret the ADA accordingly; they interpret it in their own preferred way of “understanding it” and they abuse this often. As a result of this, this leaves many of us with a brutal choice: either walk away, be forced to step down, or stick it through because we need the job. And we do need the job. What’s more, so many of us are not entirely respected or valued. We are often treated with a constant sense of microaggression, micromanagement, and we are questioned for our decision-making, never truly trusted for the job we were actually hired for. The experience doesn’t sit well or feel good for mamy of us in this position.

“Nothing about us without us” felt like it lost its way for a long time now, just like the term “ally.” Yet, I noticed people are suddenly bringing back this term “ally” and using it more and more as a way to say they want to change something. Now, that brings us to the real question of how we actually be an ally and truly practice and apply the “nothing about us without us” concept. We need to be serious about wanting to change. And yes, there’s a lot to be changed, and yes, it won’t happen overnight – we have heard this many times over. But that change has to start with confronting how this low-risk utility of passive data extraction is weaponized by non-disabled executives. During major commemorative milestones, these leaders, who possess no lived experience of the structural barriers they claim to dismantle, turn to their disabled staff or community advocates to harvest their concepts, testimonies, and qualitative data. This knowledge is then stripped of its raw, systemic critique, sanitized for institutional consumption, and presented by non-disabled administrators to bolster their own professional standing. Disabled individuals are relegated to the status of inspirational poster children, functioning as symbolic corporate assets while being explicitly denied the authority to present their own unfiltered realities from the podium.

The deeper mechanics of this exclusion are explicitly tied to the weaponization of bureaucratic metrics and state funding structures. In an administrative system governed by crude population scales and cost-benefit ratios, the DeafBlind community is systematically erased through the targeted application of data scarcity. Bureaucracies fall back on demographic metrics to argue that because larger independent populations of physcially diabled, nerodivergent, blind individuals, deaf individuals, or senior citizens exist, resources must be disproportionately funneled away from the distinct, low-incidence needs of DeafBlind people. This is not objective mathematics; it is an ideological bias that uses data scarcity to justify starvation of services. By demanding exhaustive, empirical evidence-based data as a prerequisite for funding, while simultaneously maintaining structural barriers that prevent the community from compiling that data, institutions trap DeafBlind individuals in a cycle of administrative invisibility.

This pervasive paternalism is clearly observable within the foundational service organizations explicitly built to serve these communities. Major communication entities, such as the Sorenson phone company, remain prominently directed and managed by hearing, sighted executives who operate remote from the linguistic and cultural realities of the Deaf community. Similarly, specialized institutions like the Helen Keller National Center (HKNC) maintain structures where hearing and sighted administrators retain ultimate budgetary and policy control, positioning DeafBlind professionals underneath them. In these environments, disabled experts are treated as consultation puppets rather than autonomous directors of their own institutional history. This dynamic reproduces a state of enforced dependency, ensuring that the organizations capturing public resources for disability services remain securely managed by non-disabled gatekeepers.

This systemic control is enforced by the very mechanisms designed to oversee civil rights compliance. The internal accommodations and compliance sections of state and corporate bodies are overwhelmingly staffed by non-disabled personnel possessing purely administrative or generic human resource backgrounds. Lacking any personal alignment with the breadth of disability diversity, these officials reduce civil rights protections to a rigid, one-size-fits-all checklist. This systemic failure is rooted in a fundamental architectural flaw: the ADA is trapped in a 1990s mentality. Conceptualized over three decades ago, the statutory framework views disability through a highly medicalized, binary lens – either an individual fits neatly into a specific, predetermined category of a disability, or they do not. It is an archaic “this or that” / black and white paradigm that completely fails to comprehend the breadth and intersectionality of modern disability diversity.

Because it is anchored in this outdated 1990s mindset, the ADA has become broken. It has fractured because it was built for standalone accommodations, a ramp here, a screen-reader there, captioning for that, rather than systemic, fluid environmental access. Compliance officers and HR departments routinely exploit this brokenness. They use their administrative power to interpret the law not as a dynamic civil rights shield, but as a rigid ceiling. When a DeafBlind worker requests highly specialized, integrated accommodations, such as co-navigational support, a team of DeafBlind interpreters, multi-modal digital access, or to work remotely, compliance officers weaponize this binary framework to frame the request as an unreasonable burden. They exploit the outdated text of the law to minimize liability for the employer rather than ensuring access for the worker. This institutional ableism transforms compliance offices into tools of intimidation and surveillance, where the determination of what is deemed reasonable is dictated entirely by non-disabled administrators (or disabled administrators with internalized ableism and biases) seeking to preserve the existing power hierarchy.

Transitioning from this performative allyship to material equity requires an absolute departure from the administrative status quo, starting with a move away from the destructive model of the one-time consultation toward a framework of sustained, legally binding co-governance. This is operationalized by embedding a DeafBlind organizational strategist directly within human resource and executive leadership teams for a minimum twelve-month tenure. This position cannot be advisory; it must possess independent auditing authority to evaluate hiring frameworks, physical and digital infrastructures, and internal promotion pathways. Crucially, the organizing institution must contractually commit to the active implementation of the auditor’s systemic overhauls prior to the conclusion of the contract, thereby transforming lived experience from an aesthetic checkbox into a legally empowered mechanism of structural redirection.

Alongside this structural restructuring of governance, the pervasive reliance on low-cost, automated online compliance modules must be completely dismantled. These digital platforms function primarily as liability shields for employers, allowing personnel to passively navigate automated slides and pass a basic quiz without altering their deep-seated habits or challenging their internalized biases. To achieve genuine behavioral transformation, organizations must reinvest in sustained, in-person educational frameworks. Modeled after rigorous academic coursework, this requires mandatory, monthly interactive seminars designed and facilitated exclusively by DeafBlind educators. Furthermore, these educators must be granted co-supervision authority alongside internal management to observe personnel in real-time, evaluate their work with consumers, and deliver binding performance feedback. Staff retention and advancement must be directly contingent upon a demonstrated mastery of these competencies, ending the era of passive learning and subsequent reversion to ableist habits.

Finally, dismantling the bureaucratic “numbers game” requires a fundamental paradigm shift toward data justice. State and corporate entities can no longer utilize crude utilitarian metrics, which favor higher-incidence populations, to justify the systematic underfunding of the DeafBlind community. True allyship demands that resource allocation be decoupled from raw population density and re-anchored in equity and distinct human utility. This requires the establishment of dedicated, state-funded research initiatives led by DeafBlind scholars to design and execute alternative demographic methodologies. By funding the generation of this specialized data, rather than treating its absence as an excuse for exclusion, bureaucracies can finally eliminate the manufactured evidence barriers that perpetuate community invisibility.

Ultimately, the issue of “Nothing About Us Without Us” motto is not a failure of rhetoric, but a preservation of power. When corporations, state agencies, and foundational institutions utilize Disability Pride Month and the anniversary of the ADA to harvest the narratives of disabled individuals while denying them institutional authority, they commit an act of epistemic violence. They reduce a radical civil rights mandate to a sanitized corporate commodity. As long as the law remains tethered to a 1990s binary mentality, non-disabled (or disabled folks with internalized ableism and biases) compliance officers will continue to weaponize the statutory boundaries of a broken system to protect employers from liability. As long as organizations serving the Deaf and DeafBlind communities remain securely managed by hearing, sighted gatekeepers, inclusion will remain a hollow performance. True allyship is not demonstrated through a polite nod at the table, nor is it found in the sanitized presentations of non-disabled executives. It requires a profound, unsettling redistribution of material resources and governing power. To move beyond tokenism, institutions must yield the podium, defund the automated checklists, and structurally commit to long-term, compensated, and authoritative leadership by individuals with lived experience. The performance must end. The steering wheel must be surrendered to the community that has earned the right to drive its own history and services.