Defining Care

We all need care. Care can be viewed as “a species activity that includes everything we do to maintain, continue, and repair our ‘world’ so that we can live in it as well as possible. That world includes our bodies, our selves, and our environment, all of which we seek to interweave in a complex, life-sustaining web” (Fisher and Toronto, 1990, p. 40). Care is not specific to disability; it’s an essential part of being human and brings to light the dependencies we share with one another. Nowhere is this more apparent than in the formal healthcare system.

Eva Fedder Kittay’s notion of the “ethic of care” recognizes the responsibilities and obligations we have towards one another’s flourishing, and includes the imperative to ensure that what care is provided can be taken up by those we care for. In other words, care must be accessible. An ethic of care is particularly important in formal healthcare settings where “we are not equally situated or empowered,” such as “when we are ill or incapacitated or faced with ‘experts’ with greater knowledge and power” (Kittay, 2011, p. 55). The giving and receiving of care can be a source of dignity. At some point in our lives, we all experience a “relationship of dependence” (Kittay, 2011, p. 54)

Media Moment

Time: 12 minutes, 6 seconds

Take a moment to watch the following TED Talk by Janey Starling & Seyi Falodun-Liburd. Notice how they define and practice care.

How collective care can change society | Janey Starling & Seyi Falodun-Liburd | TEDxLondonWomen

Reflection Moment

Respond to the following reflection questions:

• What acts of care do you require for your everyday life?
• How do you care for others?
• How does your cultural background and social location inform your practices of care?

Care Within Healthcare

Healthcare providers often have both the desire and the obligation to deliver accessible care. Yet, many barriers exist that risk setting the groundwork for ableist interactions. These include attitudinal barriers, such as ableist assumptions and stigma; informational barriers, including a lack of disability-specific knowledge or communication tools; and structural barriers, such as income or inaccessible facilities. These overlapping barriers contribute to disabled peoples’ unmet healthcare needs at rates two to three times higher than the general Canadian population. Disabled Canadians who experience ableist discrimination in healthcare settings often report poorer health outcomes. Many also note that providers have limited understanding of the challenges disabled people face in pursuing health-promoting activities. At the same time, healthcare professionals report a lack of appropriate disability-related training.

Structural

Structural barriers refer to the material and systemic obstacles that prevent disabled people from accessing healthcare. These include issues of income, transportation, infrastructure, professional availability, and the broader systems that govern service delivery.

Transportation: Lack of transportation impedes healthcare access in several ways. Rural and suburban areas may not have coordinated or affordable public transit options. In urban settings, paratransit systems can be difficult to schedule and unreliable, making it challenging to coordinate medical appointments. Alessia’s experience—shared in the From the Community moment below—highlights the strain of navigating multiple systems while trying to receive timely care.

Physical access: Inaccessible clinics, diagnostic equipment, and the absence of on-site support—such as attendants—mean that many disabled people are excluded from the full range of healthcare services. Barriers in the built environment remain a persistent issue across both urban and rural care settings. These experiences are explored further in the Enabling Accessible Healthcare mini-documentary.

Provider shortages: A lack of healthcare professionals—including general practitioners, specialists, and allied health providers like occupational therapists or dieticians—especially in smaller or rural communities, limits disabled people’s ability to access care. Even in urban centres, access to specialists can vary widely. The absence of these supports may significantly alter the course of a person’s condition, particularly for those with complex or chronic illnesses.

Intersectional experiences: Structural barriers are compounded by people’s complex and intersecting identities. Gender, race, class, migration status, and sexuality intersect with ableist systems in ways that create unique vulnerabilities. For instance, disabled women, particularly those labelled with intellectual or mental health differences, often find their parenting called into question in healthcare settings. At one extreme, they may be subject to birth alerts; at the other, their parenting can be subtly undermined during routine interactions with providers (Ignagni & Schormans, 2016).

Geographic barriers: Even within the same region, disabled people report stark differences in the accessibility of services. Someone may have excellent access to a neurologist, while struggling to obtain diabetes management or emergency care nearby. These geographic gaps limit continuity and comprehensiveness of care.

System-level barriers: As Gibson and Mykitiuk (2012) observe, disabled people frequently navigate a “hodgepodge of interrelated but disconnected services.” Programs funded and delivered by various public, private, and non-profit organizations often fail to coordinate policies or communicate effectively. Within this fragmented system, individuals are left to decipher bureaucratic requirements, locate advocacy supports, and pursue complex pathways to meet their needs.

From the Community

Crystal
Crystal shares how a shift from pediatric to adult care drastically increased the number of specialists she must now see, even though her health needs have not changed. This increase in fragmentation leads to redundant appointments, conflicting prescriptions, and a heavy burden on her to coordinate care across disconnected systems.

Alessia
Alessia describes how disconnected health and social service systems leave disabled people responsible for managing their own care across multiple providers who don’t communicate with one another. The structural failure to coordinate care places immense strain on individuals navigating complex needs.

Informational

Within any healthcare encounter, disabled people often carry the burden of taking additional “care” to communicate effectively, ask the right questions, and navigate access needs. Managing care can require a significant amount of time and energy, often falling to the person accessing services rather than being supported by the healthcare system as a whole.

From the Community

Eliza
Eliza reflects on a time she sought care for a broken hand, and how her access needs were overlooked in the process.

Keeping Eliza’s experience in mind, take a moment to explore some strategies for accessible care in the healthcare encounter:
Providing Equitable Care – Trillium Health Partners

Many disabled people find that health information is not always available in accessible formats. Materials in large print, Braille, audio recordings, plain language, or image-based formats support those with sensory and cognitive differences in accessing critical instructions—such as medication dosages or rehabilitation exercises. When ASL interpretation or plain-print materials are unavailable, Deaf and hard of hearing people may miss essential health details.

While some patients bring family members or support persons to assist, there are still challenges. Clinical language can be difficult to translate, and important nuances may be lost or misunderstood. If you haven’t yet explored Kayleigh’s experience as a DeafBlind intervenor in Module 3, her story offers further insight into these communication gaps.

Health care providers may also lack adequate training about disability-related experiences. Many express a desire to learn more about accessibility and accommodations but feel underprepared to address the complexity of disabled people’s intersecting health concerns.

From the Community

Rebecca
Rebecca shares how providers sometimes lack awareness of available programs—even when those programs are housed within the same hospital system. Her experience highlights how information gaps among professionals create barriers to care continuity.

Attitudinal

Stereotypical, discriminatory, and paternalistic attitudes on the part of health care providers represent a significant barrier for disabled people in accessing care. Encounters with ableist attitudes—even when unconsciously held—can serve as a powerful disincentive to seeking healthcare. Disabled people describe a consistent underestimation of their capacities and autonomy. For example, providers may not expect their disabled patients to live indepently, be employed, or parent.

Within the healthcare system, there is often a misconception that a disabled patient cannot understand information about diagnoses or treatments. As a result, providers may direct communication to accompanying support persons rather than to the patient. In other instances, health-promoting activities such as exercise programs or social prescriptions may not be offered based on narrow understandings about the activities that disabled people can pursue in their everyday lives. Sometimes these assumptions rest with a limited view of people’s capacities, other times they rest with providers’ lack of knowledge about the accessibility of these activities.

Disabled people also report that their health concerns are sometimes dismissed or misunderstood due to overgeneralized and narrow understandings of disability. When disability is treated as a person’s primary identity, the intersecting and complex health concerns of disabled people who are racialized, women, trans or non-binary, low-income, or living with precarious migration status are often overlooked. In some cases, the social and economic contexts in which disabled people live further restrict their access to appropriate care.

For example, as of 2021 there were in Canada 7590 disable people under the age of 55 lived in nursing homes in order to receive adequate assisted living supports (Canadian Human Rights Commission, n.d.). In the context of this living arrangement, these disabled Canadians face challenges accessing age-appropriate health care. Norms at the intersection of aging and disability are overgeneralized in ways that curtail opportunities for health.

Healthcare—particularly physician care—remains a route to important resources and validation of embodied experiences. Yet individuals with chronic illness or pain frequently report that their symptoms are not taken seriously. Those who have had interactions with mental health systems may find their physical symptoms dismissed as psychological in nature, further delaying or preventing proper diagnosis and treatment.

One step toward more equitable care is for providers to deepen their awareness of the barriers disabled people face. Ontario is currently poised to enact AODA Health Care Standards, which include recommendations for training healthcare professionals to better support disability access and inclusion. Healthcare practice that is accessible, inclusive, and grounded in dignity and respect improves health outcomes and upholds justice for Ontarians and their families. Training must enhance awareness of both everyday interpersonal ableism and broader structural barriers—social, built, and economic—while providing tools, informed by legislation and the disability community, to help create equitable care environments.

Reflection Moment

Reflect on the structural, informational, and attitudinal barriers discussed in this section. What patterns do you notice across these different types of barriers?

How might these overlapping barriers impact a disabled person’s experience of care, from booking an appointment to receiving treatment?

What changes could you imagine in policy, training, or healthcare practices that would begin to address these layered challenges?