Deja Forde-Dixon

rehabINK Commentary

Caregivers occupy a central yet often unexamined position within rehabilitation. Across disciplines, they are routinely described as essential partners, responsible for implementing therapeutic strategies, coordinating care, and sustaining rehabilitation beyond clinical environments. Despite this centrality, caregivers themselves are rarely treated as complex social subjects navigating multiple systems of marginalization. This absence is not neutral; it is structured.

Rehabilitation operates through an implicit image of the “idealized caregiver”: someone endlessly available, emotionally regulated, physically capable, and structurally unburdened. This caregiver is rarely named yet consistently assumed. Embedded within this figure are norms of whiteness, middle-class stability, and able-bodiedness. As a result, Black caregivers – whose caregiving is structured by histories of racialization, structural inequities, and interdependent forms of care – are rendered simultaneously essential and incomprehensible within rehabilitation systems. Within these systems, the conditions shaping their caregiving are often veiled, obscuring the structural realities that inform how care is given and sustained. Within rehabilitation, caregivers are perceived through an institutional gaze ( Foucault, 1973), and Black caregivers must simultaneously negotiate their own understanding of care within “the veil” – W. E. B. Du Bois’s description of how their realities are only partially seen and often misrecognized (Du Bois, 1903). This tension demands a different conceptual lens, and here I turn to the work of W.E.B. Du Bois and his formulation of double consciousness. 

In The Souls of Black Folk, Du Bois describes the experience of “always looking at one’s self through the eyes of others,” a condition in which Black individuals must navigate a dominant gaze that does not fully recognize their humanity. He writes of “this sense of always looking at one’s self through the eyes of others… one ever feels his two-ness” (Du Bois, 1903).

I argue that Black caregivers navigating rehabilitation systems experience a similar dynamic. Their caregiving is shaped by lived realities – relational, embodied, culturally grounded, and often collective. Yet, they must also see themselves through the institutional gaze of rehabilitation that evaluates them against an ideal caregiver imagined through whiteness and structural privilege. This produces what I conceptualize as caregiver double consciousness: a tension between lived caregiving and the expectations imposed by rehabilitation systems that were never designed with Black caregivers in mind.

The Rehabilitation Gaze and the Ideal Caregiver

Rehabilitation does not simply support caregiving; it constructs what caregiving should look like. Within many rehabilitation models, caregivers are positioned as extensions of clinical care – responsible for implementing strategies, reinforcing therapeutic goals, and maintaining structured routines in the home. Implicit in this positioning is an assumption of capacity. 

These expectations are deeply racialized. They reflect norms historically and structurally aligned with whiteness and middle-class life, where time, resources, and institutional access are more readily available. Dominant disability frameworks have often failed to account for how race shapes experience and recognition (Bell, 2006), while institutional models of care frequently obscure the inherently relational and dependent nature of caregiving (Kittay, 1999). For example, caregiver-mediated rehabilitation programs frequently assume that parents possess the time, resources, health, and institutional knowledge necessary to implement intensive interventions within the home. When racialized caregivers encounter barriers related to employment precarity, systemic racism, transportation, language access, or their own disability, these constraints are often interpreted as individual shortcomings rather than manifestations of broader structural inequities. In this way, rehabilitation systems simultaneously obscure the racialized dimensions of disability experience and conceal their reliance on unpaid caregiving labour.

For Black caregivers, these assumptions collide with lived conditions shaped by structural racism, economic inequities, and systemic barriers within healthcare and social services. Caregiving may involve navigating multiple systems simultaneously, managing limited resources, and relying on extended family or community networks (Piepzna-Samarasinha, 2018). These forms of care are not deviations from a norm – they are alternative logics of care. Yet within rehabilitation, they are often misrecognized.

Black caregivers are not seen as differently positioned; they are seen as falling short.

Caregiver Double Consciousness

Within this context, caregiver double consciousness emerges as a condition of navigating two competing ways of understanding care.

On one hand, Black caregivers understand caregiving through lived experience. Care is relational, adaptive, and often collective. It is shaped by cultural knowledge, family dynamics, and material realities. It may not align with standardized routines or individualized intervention models.

On the other hand, Black caregivers must interpret their caregiving through the rehabilitative gaze. They are evaluated – implicitly or explicitly – as compliant or non-compliant; engaged or disengaged; capable or resistant. This produces a form of self-surveillance. Caregivers must not only provide care but also manage how their care is perceived. They may adjust their behavior, language, or presentation in clinical spaces in order to be recognized as “good” caregivers. In this way, caregivers become responsible not only for care itself, but also for the continuous work of monitoring how they are seen, producing an additional layer of labour that can negatively affect their well-being and quality of life.

Du Bois’s articulation of “two-ness” is critical here. He describes “two souls, two thoughts, two unreconciled strivings.” For Black caregivers, this duality is not abstract – it is lived within everyday encounters with rehabilitation clinicians and systems. They must navigate their own understanding of care while simultaneously negotiating how that care is interpreted within systems that are structured by racialized assumptions. This is not simply a matter of miscommunication, but a deeper condition of misrecognition, in which Black caregivers are interpreted through frameworks that fail to reflect their lived realities.

Race, Disability, and Structural Misrecognition

The experiences of Black caregivers cannot be understood outside of the broader structures that shape them. Healthcare and rehabilitation systems are not neutral spaces; they are embedded within histories of racial inequality and ongoing forms of institutional racism. Black caregivers may encounter dismissal of their knowledge and expertise, heightened scrutiny or surveillance, assumptions of non-compliance, or disengagement and barriers to accessing resources and services (Mireles et al., 2025).

At the same time, disability further complicates these dynamics. Black caregivers who are themselves disabled may be rendered invisible within systems that assume caregivers are non-disabled. Their capacity to give care may be questioned, while their own care needs remain unrecognized (Niles et al., 2026).

Drawing on Kimberlé Crenshaw (1989), these experiences must be understood as intersectional. Race and disability do not operate independently; they intersect to produce compounded forms of marginalization. For Black disabled caregivers, caregiver double consciousness is intensified, as they navigate multiple layers of misrecognition simultaneously.

A Positional Reflection

As a Black speech-language pathologist, I recognize how these dynamics are reproduced within everyday clinical practice. I also recognize that I work within rehabilitation as an institution, and in doing so, I am not outside of these logics – I am implicated in them, and at times, I may reproduce the very assumptions I seek to critique. Yet, as a Black woman, I also understand what it means to exist within “the veil”.This dual positioning shapes how I understand caregiving and informs how I practice within clinical spaces.

Caregivers are often assessed not only on their actions, but on how closely they align with an unspoken ideal. Engagement is interpreted through narrow frameworks that do not account for structural realities. Within speech-language pathology, caregivers are frequently positioned as central facilitators of intervention. They are expected to model language, implement strategies, and sustain therapeutic routines. While this model is often framed as collaborative, it can obscure the unequal distribution of responsibility and the assumptions embedded within it. When Black caregivers do not – or cannot – meet these expectations, the perceived problem is located within the caregiver rather than within the intervention model itself, reflecting the influence of the institutional gaze.

Implications for Rehabilitation

If rehabilitation is to meaningfully center caregivers, it must confront how race structures its assumptions.

This requires moving beyond universalized models of caregiving toward approaches that recognize caregiving as relational, situated, and shaped by structural conditions. It requires acknowledging that Black caregivers are not deviations from an ideal, but individuals navigating systems that have not been designed with their realities in mind.

Rehabilitation must critically examine and name the racialized assumptions embedded within the ideal caregiver, while recognizing Black caregivers as knowledgeable, embodied subjects. It must also account for the structural inequities that shape caregiving capacity and move toward valuing collective, adaptive, and culturally grounded forms of care that more accurately reflect the realities of Black caregiving practices. Crucially, this is not about inclusion within existing frameworks. It is about transformation. It requires rethinking what counts as care, who defines it, and whose practices are recognized as legitimate.

Conclusion

Rehabilitation cannot claim to center caregivers while continuing to rely on racialized assumptions that render Black caregivers invisible. Du Bois’s concept of double consciousness reveals that Black caregivers are often required to navigate rehabilitation systems while seeing themselves through a gaze that was never designed to see them fully.

Recognizing caregiver double consciousness is not simply a theoretical exercise. It is a call to reconsider how rehabilitation systems understand care, how it evaluates caregivers, and how it might begin to build systems that truly reflect the lived realities of those it depends on.

Only by challenging the normative assumptions that govern rehabilitation and caregiving can the field create forms of care that recognize, support, and value the diverse realities of families’ lives.

References

Bell, C. (2006). Introducing white disability studies: A modest proposal. In L. J. Davis (Ed.), The disability studies reader (2nd ed., pp. 275–282). Routledge.

Crenshaw, K. (1989). Demarginalizing the intersection of race and sex: A Black feminist critique of antidiscrimination doctrine, feminist theory and antiracist politics. University of Chicago Legal Forum, 1989(1), 139–167.

Du Bois, W. E. B. (1903). The souls of Black folk. A. C. McClurg & Co.

Foucault, M. (1973). The birth of the clinic: An archaeology of medical perception. Vintage Books.

Kittay, E. F. (1999). Love’s labor: Essays on women, equality, and dependency. Routledge.

Mireles, D., Wolde, E., Marrun, N. A., Goins, M., Ureño-Villalba, A., & Clark, C. (2025). “I almost feel like they don’t want me to say anything at all”: Racist ableism and the (dis)location of caregivers of color in schools. Race Ethnicity and Education, 1–20. https://doi.org/10.1080/13613324.2025

Niles, C., Yoshida, K., Vickers, K., Anderson, J., El-Lahib, Y., Hamdy, R., & Al Awamry, N. (2026). Untold stories of Black and racialized immigrants with disabilities during COVID-19 in the Greater Toronto and Hamilton Area.

OpenAI. (2026). Unveiling [AI-generated image]. ChatGPT. https://chatgpt.com

Piepzna-Samarasinha, L. L. (2018). Care webs: Experiments in creating collective access. In Care work: Dreaming disability justice. Arsenal Pulp Press.