Social Science & Medicine 369 (2025) 117807

Contents lists available at ScienceDirect

Social Science & Medicine

journal homepage: www.elsevier.com/locate/socscimed

“It’s a low-key thing of eugenics”: Disability reproductive injustice in

barriers to cervical cancer screening during the COVID-19 pandemic
Meredith Evans a , Kyara J. Liu b , Alexandra Rego a , Nkem Ogbonna a , Sidrah K. Zafar a ,
Hilary K. Brown a,b,*
a
Department of Health and Society, University of Toronto Scarborough, Canada
b
Dalla Lana School of Public Health, University of Toronto, Canada

A R T I C L E I N F O A B S T R A C T

Handling editor: Medical Sociology Office Cervical cancer screening (CCS) is a critical component of preventative sexual and reproductive healthcare, yet
there are disparities in access to CCS for people with disabilities. This qualitative community-engaged study uses
Keywords: the disability reproductive justice framework to examine how the COVID-19 pandemic impacted people with
Cancer screening disabilities’ experiences with CCS in Canada. From May 2022 to March 2023, semi-structured interviews were
Cervical cancer
conducted with 40 women and gender-diverse people with physical, sensory, cognitive, and/or mental health
COVID-19
disabilities. Results from a thematic analysis indicate that barriers to CCS before and during the COVID-19
Disability
Intersectionality pandemic were characterized by inaccessibility, ableism and intersecting forms of oppression, provider
Sexual and reproductive health distrust, the deprioritization of people with disabilities’ sexual and reproductive healthcare, and the disregard for
disabled people’s autonomy. Grounded in these findings, this article situates preventative sexual and repro­
ductive healthcare like CCS as a disability reproductive justice concern. Amplified by the COVID-19 pandemic,
barriers to CCS enacted disability reproductive injustice through everyday ableism and micro-eugenics that
devalued people with disabilities. Barriers to CCS must be addressed in collaboration with disability commu­
nities. Guided by participant insights, recommendations include making preventative sexual and reproductive
health services like CCS more accessible and available to people with disabilities, especially in the aftermath of
public health emergencies that disproportionately impact disability communities.

1. Introduction disabilities, communication and information barriers for people with

sensory or cognitive disabilities, and intersecting social determinants of
Cervical cancer screening (CCS) is globally recognized as a critical health that disproportionately impact people with disabilities like
component of preventative sexual and reproductive healthcare—access poverty that deter access to care (Chan et al., 2022; Edwards et al., 2020;
to CCS reduces cervical cancer incidence and improves health outcomes, Power et al., 2024). CCS disparities exemplify how disabled people
including survival rates (Loomans-Kropp & Umar, 2019). The United experience structural ableism in healthcare systems—discrimination
Nations Convention on the Rights of Persons with Disabilities affirms predicated on sociocultural norms, policies, institutions, and in­
equitable rights to sexual and reproductive health (United Nations, frastructures that are intentionally or unintentionally exclusionary.
2006); however, people with disabilities experience sexual and repro­ CCS through cytology-based testing (i.e., Pap test or smear) is a
ductive health disparities including lower rates of CCS, poorer quality publicly funded service free at the point of care in Canada, a high-
cancer care, and increased adverse outcomes (e.g., higher rates of cancer income country with a single-payer and decentralized universal
diagnosis, later-stage diagnosis, and mortality) compared to people healthcare system known nationally as Medicare. Since the early 2000s,
without disabilities (Andiwijaya et al., 2022; Iezzoni et al., 2021; Orji most Canadian provinces have implemented CCS programs that recruit
et al., 2023; Tosetti and Kuper, 2023). While disability is a diverse lived individuals to book appointments every two to three years from age 21-
experience, CCS disparities can be explained by factors like provider 25 until age 65–70 (Canadian Partnership Against Cancer, 2024). When
misconceptions that people with disabilities are not sexually active and the COVID-19 pandemic began in March 2020, CCS programs were
do not need CCS, physically inaccessible clinics for people with physical interrupted by global lockdown measures and restrictions on healthcare

* Corresponding author. Department of Health & Society, 1265 Military Trail, Toronto, Ontario, M1C 1A4, Canada.
E-mail address: [email protected] (H.K. Brown).

https://doi.org/10.1016/j.socscimed.2025.117807
Received 27 June 2024; Received in revised form 6 December 2024; Accepted 30 January 2025
Available online 3 February 2025
0277-9536/© 2025 The Authors. Published by Elsevier Ltd. This is an open access article under the CC BY license (http://creativecommons.org/licenses/by/4.0/).
M. Evans et al. Social Science & Medicine 369 (2025) 117807

services implemented to mitigate COVID-19 infection rates (Ferrara diverse sociocultural identity and experience, shaped by intersecting
et al., 2022; Sabeena and Ravishankar, 2022). CCS was suspended across forms of oppression, and to foreground sexual and reproductive health
Canada until mid-2020, reducing testing by up to 80–90% in spring service accessibility as social justice concern.
2020 (Canadian Cancer Society, 2024a; Decker et al., 2022; Meggetto
et al., 2021). By the end of 2020, over a third of healthcare providers 2.2. Study design
across Canada reported ongoing disruptions and delays to CCS (El-Zein
et al., 2023). By March 2021, rates of CCS in Ontario, Canada’s most Qualitative data is drawn from a national mixed-methods commu­
populated province, continued to be lower than before the pandemic nity-engaged study about people with disabilities’ sexual and repro­
(Walker et al., 2022). CCS disparities pre-existed the pandemic for ductive health experiences across Canada during the COVID-19
people with disabilities in Canada (Cobigo et al., 2013; Lofters et al., pandemic. This study followed community-based participatory research
2014), and quantitative studies have found the COVID-19 pandemic principles by engaging people with lived experience through activities
widened pre-existing CCS disparities for immigrant communities and that are participatory and cooperative; foregrounding co-learning, ca­
people living in lower income neighbourhoods in Canada (Lofters et al., pacity building, and empowerment; balancing research and action; and
2023), and for people with disabilities in the United States (Rolle et al., recognizing intersectional power and privilege (Wallerstein et al.,
2024). However, the qualitative impact of the COVID-19 pandemic on 2018). Disability community engagement was structured in three ways.
people with disabilities’ access to CCS has not previously been First, an advisory committee including people with disabilities and cli­
examined. nicians was convened to oversee study activities. Second, community
Multiple factors may have worsened pre-existing CCS disparities for organizations including DisAbled Women’s Network of Canada and ASE
people with disabilities. During the COVID-19 pandemic, people with Community Foundation for Black Canadians with Disabilities collabo­
disabilities’ access to healthcare was disproportionately affected by rated on this research as study partners. Third, core research team
inaccessible public health communications (e.g., lack of plain language members included peer researchers with lived experience of disability
resources), changes to healthcare delivery (e.g., telehealth), reductions that co-led all study activities. This study obtained ethics approval from
of disability-related supports, services, and accommodations (e.g., lack the University of Toronto Research Ethics Board (Protocol Number
of accessible transport, home care, and sign language interpreters), fears 42194, approved January 21st, 2022).
of exposure to COVID-19 (e.g., related to heightened risk of complica­
tions and medical rationing), and financial precarity (McBride-Henry 2.3. Study sample
et al., 2023). Structural ableism in healthcare was amplified by factors
like inequitable COVID-19 vaccine provision and discriminatory medi­ Purposive sampling strategies of group characteristics were used:
cal rationing and triage protocols (Andrews et al., 2021; Sebring et al., first, homogenous sampling of women and gender-diverse people with
2022). Consequently, access to sexual and reproductive healthcare for disabilities as a subgroup, and second, maximum variation sampling
people with disabilities in Canada was broadly impacted by the within this subgroup (i.e., disability type, age, race, locality) to reflect
COVID-19 pandemic, with pre-existing barriers to care amplified (e.g., diversity within the disability community (Patton, 2014). Different
discriminatory provider attitudes) and new barriers to care introduced media (e.g., website, flyers, plain text, videos) were used to recruit
(e.g., visitation bans that prohibited support persons from assisting people with disabilities through the study team’s networks (via social
people with disabilities to access services, Evans et al., 2024). To add to media, email, listservs, and word of mouth). Participants were screened
this literature and address a gap in descriptive evidence on CCS expe­ for eligibility based on the self-reported inclusion criteria of being a
riences during the COVID-19 pandemic, this community-engaged qual­ woman or gender-diverse person 18 years or older living in and
itative study mobilizes disability reproductive justice as a theoretical receiving healthcare in Canada. In line with a social model of disability,
lens to examine people with disabilities’ CCS experiences across Canada this study includes people who self-identify as disabled (including those
during the initial years of the COVID-19 pandemic. whose disability has not been medically recognized) and people who are
recognized as disabled but may identify otherwise (e.g., Deaf people,
2. Materials and methods Skelton and Valentine, 2003) to reflect diversity of identities and ex­
periences. Person-first language (e.g., person with disability) and
2.1. Theoretical framework identity-first language (e.g., disabled person) is used to reflect different
language preferences among disability communities (Andrews et al.,
The disability reproductive justice framework synthesizes repro­ 2022), and among the participants in this study. In total, 61 participants
ductive justice and disability justice theories. Informed by Black femi­ completed interviews that addressed how COVID-19 impacted access to
nism, reproductive justice theorizes reproduction as a social justice sexual and reproductive healthcare services, and the current study
concern shaped by intersecting forms of oppression (e.g., sexism, racism, sample includes 40 participants who discussed experiences with CCS.
classism, cissexism [i.e., transphobia], heterosexism [i.e., homophobia], Table 1 summarizes the sample’s characteristics (N = 40). Disability
and ableism) and violent histories like the compulsory sterilization of types included physical (n = 26), cognitive (n = 17), mental health (n =
Black women (Kluchin, 2016; Ross, 2006; Tam, 2021). Developed by 19), and sensory (n = 3). The average age was 38 years (range 23–58
queer disabled women of colour activists, disability justice theorizes years). Most identified as white (n = 29), cisgender women (n = 32), and
ableism as an intersectional social justice concern and advocates for heterosexual (n = 26). Over half of the sample was partnered (n = 17
moving beyond individual rights-based frameworks toward liberation married or common-law cohabitating; n = 6 long-term relationships).
through collective interdependence (Berne et al., 2018). Disability The sample also included racialized people (n = 11, including Black,
reproductive justice is grounded in five principles (Powell, 2022a): (1) Asian, Indigenous, Middle Eastern, and Caribbean people), gender-
disrupt intersecting oppressions; (2) centre people with disabilities as diverse people (n = 8, including transgender men/masculine people,
leaders; (3) protect autonomy and self-determination; (4) ensure sexual transgender queer, genderqueer, or non-binary persons [i.e., fluid
and reproductive health services and information are accessible and identification with both or neither masculine and feminine identities],
available to people with disabilities; and (5) guarantee rights, justice, and a Two-spirit person [i.e., a queer gender, sexual, and spiritual
and wellness for people with disabilities and their families. Disability identity unique to Indigenous people of Turtle Island including Can­
reproductive justice is critical in the context of the COVID-19 pandemic, ada]), and queer people (n = 14, including asexual, gay, lesbian,
which has disproportionately affected disabled people and their repro­ bisexual, or pansexual). Most had tertiary education (n = 36). Partici­
ductive autonomy (Powell, 2022b). This study uses a disability repro­ pants lived in 5 Canadian provinces, including Ontario (n = 28), Sas­
ductive justice lens to account for the ways in which disability is a katchewan (n = 5), British Columbia (n = 5), New Brunswick (n = 1),

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M. Evans et al. Social Science & Medicine 369 (2025) 117807

and Newfoundland (n = 1). Most lived in cities of 30,000 or more people improving access to CCS for people with disabilities are integrated
(n = 35). throughout.

2.4. Data collection and management 3.1. Inaccessibility

Data were collected between May 2022 and March 2023, throughout The COVID-19 pandemic exacerbated pre-existing physical and
the third year of the COVID-19 pandemic and before the World Health communication accessibility barriers to CCS. Service shortages and re­
Organization declared the pandemic was no longer an international strictions to care (e.g., visitor bans that prohibited support persons from
public health emergency in May 2023. Either verbal or written consent healthcare facilities) limited disability supports, and introduced new
was documented prior to interviews of approximately 60–90 min in health and safety concerns. After CCS services resumed, Shannon, a
length, which were conducted by a medical anthropologist and peer white woman who identifies as Deaf, scheduled a CCS appointment that
researchers over videoconference (i.e., Zoom, with video and audio or was further postponed by over six months because of sign language
audio-only) or telephone. Semi-structured interview guides were interpreter shortages. Anika, a multiracial (East/Southeast/South Asian
designed for this study by the research team in consultation with the and Caribbean) woman who described herself as blind, was denied a
advisory committee and community partners. Open-ended questions support person at her CCS appointment because of COVID-related
asked participants about their sexual and reproductive health history (e. restrictions:
g., “can you tell us about your sexual and reproductive health over the
years?”); experiences accessing, trying to access, or thinking about [Hospital staff] said I can’t have somebody with me. I said, “How am
accessing sexual and reproductive health services during the COVID-19 I supposed to get upstairs [to my appointment]?” They said, “Usually
pandemic, defined as from March 2020 to the point of interview (e.g., we can get someone to help you. Unfortunately, [we] don’t have
“can you tell us about any experiences when you needed sexual and anybody right now, so you’ll have to wait.” I got mad, and I left. [ …]
reproductive health services during the pandemic?”); and recommen­ I didn’t end up going to do that test for two years. I should’ve done it
dations for improving services (e.g., “how could sexual and reproductive every year [because of previous abnormal CCS results], but I just got
health services be improved for people with disabilities?”). Accommo­ fed up.
dations were available (e.g., sharing interview questions in advance, Cynthia, a white woman who has a physical disability, said the
captioning, and facilitating supports like sign language interpreters). COVID-19 pandemic amplified the inaccessibility of CCS:
After interviews, participants received a gift card (40 CAD) and a list of
sexual and reproductive health resources. I haven’t been able to do [CCS] since the pandemic started [2.5 years
Audio recordings of interviews were transcribed by a professional ago]. I’m quite at risk [of COVID] because my lungs are compro­
service. Transcripts were verified and deidentified by two interviewers mised. I didn’t feel safe going into a doctor’s office [ …] My husband
(a medical anthropologist and a peer researcher); potentially identifying usually lifts me [onto the inaccessible examination table, and] it’s
information was removed and pseudonyms were assigned. All study data been hard to manage different schedules amidst COVID.
(i.e., screening and consent forms, audio recordings, deidentified tran­ Antonia, a white woman who identifies as autistic, experienced in­
scripts, and metadata files) were password-protected, encrypted, and formation and communication barriers to CCS during the pandemic; she
electronically stored on secure university servers, and identifiable data said providers did not accommodate their communication style to be
(i.e., audio recordings) were erased. Data saturation was determined to autism-friendly (e.g., by using clear, unambiguous language and
be satisfied after interviewers identified informational redundancy in providing written information with visual illustrations), and instead
narratives (Saunders et al., 2018). explained her abnormal CCS results “as if [she] didn’t have a disability.”
Accessibility considerations improve participants’ CCS experiences.
2.5. Data analysis Rachel, a white woman with Cerebral palsy, found CCS easier and more
comfortable at a clinic that had a patient lift. Irene, a woman with a
A thematic analysis (Braun and Clarke, 2021) was conducted in physical disability, said CCS experiences could be improved if providers
NVivo 12 using a hybrid approach to coding led by three researchers. felt more comfortable helping patients with disabilities (e.g., with
First, all 61 transcripts were coded deductively, using descriptive and transfering to the examination table). Cynthia recommended increasing
structural coding to identify predetermined content including types of government funding to improve the accessibility of health facilities (e.g.,
sexual and reproductive health services discussed. Second, 40 tran­ by paying for devices like patient lifts) and to train providers (e.g., in lift
scripts that discussed CCS experiences were inductively coded following and transfer skills). Anika said healthcare facilities should allow support
an open-ended approach to initial coding that included process coding persons to assist people with disabilities in accessing appointments like
(reflecting healthcare interactions), in vivo coding (drawing from par­ CCS during a pandemic, and Shannon recommended ensuring the
ticipants’ own language), and concept coding (reflecting theoretical availability of services like sign language interpretation.
ideas, Saldana, 2021). Third, guided by the disability reproductive jus­
tice framework (Powell, 2022a), initial codes were interpreted into
3.2. Intersectionality
themes using elaborative coding methods (Saldana, 2021). Themes were
reviewed in meetings with research team members to refine in­
Intersecting sexism, racism, and classism compounded ableist bar­
terpretations and identify implications and recommendations (Creswell,
riers to CCS before and during the COVID-19 pandemic. Rachel said
2014); any disputes were resolved through open discussion (Chinh et al.,
providers denied her accessible CCS because of her sexuality:
2019). Fourth, preliminary findings were shared with the advisory
committee and community partners through reports, presentations, and [Providers said] I didn’t need a Pap smear [because I was in a same-
meetings; feedback was used to refine interpretations. sex relationship]. I went from doctor to doctor asking, until [a gy­
necologist] said, “They don’t know what to do with you [because
3. Results you’re disabled]. So, they’re saying you don’t need [CCS]. They are
right when they say that same-sex relationships [are lower] risk [for
The following themes reflect the CCS experiences of people with cervical cancer] but they’re pushing you to the side.” [ …] You
disabilities during the COVID-19 pandemic: (1) inaccessibility; (2) would rather me die of vaginal cancer than deal with me? [ …] It’s a
intersectionality; (3) provider distrust; (4) deprioritized care; and (5) very low-key thing of eugenics. “You’re never going to need [CCS].”
disregarded autonomy. Recommendations from participants for We get it. You don’t see us as sexual beings.

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Blair, a Black, queer and non-binary transmasculine person with CCS. Cynthia felt “judgment and stigma” from providers; she delayed
physical and mental health disabilities, said there is “so much stigma CCS because her family physician retired during the COVID-19
around queer sex”; they said, “I’ve never gotten a Pap. My doctor is like, pandemic, and she had yet to build trust with his replacement. Ste­
‘You only need to get a Pap if you’ve had sex in this specific way [i.e., phanie, a South Asian woman who described her disabilities as both
penetrative sex with a person assigned male at birth].’” Simone, a Black visible and invisible, said provider distrust “prevented [her] from get­
woman with cognitive and mental health disabilities, said disability, ting another Pap smear.” Shannon stated, “I don’t have trust in [pro­
race, gender, and “being poor, being uneducated” limited her access to viders], they’re horrible to Deaf people.”
sexual and reproductive health services like CCS: To foster provider trust, participants recommended improving
disability knowledge and anti-ableist provider training. Sam, a white
I wasn’t in a privileged position. So, I wasn’t accessing stuff. [Edu­
genderqueer person with a physical disability, had positive CCS expe­
cation] is still lacking, especially for Black girls. [ …] When you’re
riences because their family physician “puts in the time and effort” to
educated, you know what your rights are. As opposed to when I was
acquire disability knowledge. Rachel advised that providers need to
this younger Black girl who didn’t know. Then, I experienced the
“drop the stigma” including the ableist stereotype that people with
system, the discrimination. [It’s] no wonder Black and disabled folks
disabilities are “non-sexual beings,” confront their “internalized able­
don’t want to seek help—because of the stigma around out
ism,” and “educate themselves about sexuality and disability.” She
positionalities.
asserted that people with disabilities need to be treated “like people,
Alanna, a Black woman with physical and mental health disabilities, because we are people.”
said her family physician disregarded her pain during CCS. Alanna
attributed this failure of care to the racist misconception that Black 3.4. Deprioritized care
people feel less pain than white people. Shay, who has cognitive and
mental health disabilities, said that experiencing homelessness as a Participants with disabilities, especially those with histories of
queer transgender Black youth compromised their access to CCS; they abnormal CCS results or cervical cancer, felt their need for CCS was
said, “when you’re in survival [mode], you’re not like, ‘I should stay on unduly deprioritized well into the COVID-19 pandemic. Despite her
top of cervical screenings.” history of cervical cancer, Sarah, a white woman with cognitive dis­
To mitigate oppression and discrimination in access to CCS, partic­ abilities, was not able to access CCS until 2022 after “fighting” her new
ipants recommended approaching disability as an intersectional family physician:
concern, increasing diversity in provider representation, and training
When I first told her I have to have my Pap tests every year, [she said]
providers in trauma-informed and inclusive care provision. As a Black
‘No, you don’t.’ I’m like, ‘If you go back to my history.’ [ …] I
disabled woman with a history of experiencing sexual violence, Simone
thought about not seeing her and going to a nurse practitioner [but]
advocated for “more people that look like us being trauma-informed
since COVID, they haven’t been doing [CCS].
workers,” and especially in the context of potentially retraumatizing
procedures like CCS. Tanya, a Two-spirit Indigenous person with phys­ Chinara, a Black woman with mental health disabilities and a history
ical and mental health disabilities, recommended: of abnormal CCS results, said, “for two years, [providers] said the Pap
test is not their priority because of COVID [ …] the routine Pap test was
Racism needs to be addressed [in healthcare], especially when it
important to me.” Nicole, a white woman with a physical disability and
comes to young people with disabilities and chronic conditions.
a history of abnormal cervical cells, elaborated:
[Providers] have too much authority and power over you, [so] it’s
really hard to speak up for yourself when you’re in the moment of a I recognize [there] needs to be certain restrictions [during the
comment being made. There needs to be more training [or] providers pandemic], [but] people with disabilities should have access to in-
need more practice [in caring for] patients from different cultures or person care more. [Services] should be more accessible to people
ethnicities. with disabilities, especially for their reproductive rights. For my Pap
test, I shouldn’t have to wait an extra year [ …] especially with my
history.
3.3. Provider distrust
Mental and physical health concerns were exacerbated by lengthy
Distrust of providers was a barrier to CCS for people with disabilities delays to CCS and related care. Melissa, who has HPV, experienced
before and during the pandemic, exacerbated by intersecting factors like major delays to treatment after receiving abnormal CCS results in fall
sexism and racism. After the painful CCS with her family doctor, Alanna 2021, which caused her stress, anxiety, and Crohn’s disease flare-ups;
postponed future screenings until her "trusted" gynecologist lifted she said, “I was constantly worried that I’m sitting here with a cervix
COVID-related restrictions to his practice and resumed preventative full of cancer and nobody is doing anything about it.” Kassie, a Black
care. Tanya explained: woman with cognitive disabilities, had never accessed CCS despite being
a sexually active woman in her 30s; she said, “I did get the letter in the
I felt very uncomfortable with [my family doctor]. [There’s] a
mail saying that I guess I should start getting [CCS].” However, she had
problem with trust. I think that’s the main barrier. [ …] I know I need
not sought CCS because, although her family physician had mentioned
to get up to date with a Pap smear—I want to go to a women’s health
it, Kassie had never received a clear recommendation to schedule an
clinic rather [than my family doctor].
appointment.
Melissa, a white woman with cognitive, physical, and mental health Participants appreciated when providers prioritized their sexual and
disabilities, sought CCS at a women’s health clinic because she did “not reproductive health by recommending CCS. Lilian, a white genderqueer
feel comfortable talking to [her] family doctor.” Rachel distrusted pro­ person with cognitive and physical disabilities, said, “my doctor said to
viders who desexualized disabled people like her; she felt “suspicious” of me, ‘You need a Pap; I’m booking you [an appointment].’ I love that she
family physicians who told her she didn’t need CCS and said, “it never was proactive. My executive function isn’t great, so I would not have
occurs [to them] that we have sex.” Alisha, a white woman with thought about it.” Rowan, a white genderqueer person with physical and
cognitive, physical, and mental health disabilities, was denied CCS by mental health disabilities, also appreciated their sexual health clinic was
her family physician in her early 20s on the grounds that Alisha hadn’t “proactive” and suggested booking an appointment. Most participants
yet had a sufficient number of sexual partners. Alisha distrusted her felt they had to self-advocate for CCS, and pandemic-related stressors
family physician’s explanation; she speculated that her family physi­ made this advocacy more difficult. Hannah, a white woman with a
cian’s inaccessible clinic may have been the real reason she was denied physical disability, explained, “[I had to] make sure I was getting [CCS]

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because no one was calling me, updating me. [ …] Advocating for Stop doing things to us and do them with us. [Providers] need to start
yourself as a person with a disability [was] heightened during the to recognize the expertise [of] people with disabilities. – Caroline
pandemic.” Tanya said, “the regular Pap smears, [during the pandemic]
[Providers should] listen to disabled people more [because] we live
I wasn’t prioritizing them [because] we were in survival mode.” Pre-
in these very unique and beautiful ways in which we access the world
existing health concerns also made it difficult to prioritize CCS. Caro­
very differently. We always have ideas and suggestions [that]
line, a white woman with a physical disability, said “the multitude of
improve things. – Cynthia
health demands” on her during the pandemic caused her to de-prioritize
sexual and reproductive healthcare like CCS; she criticized the health­
care system for placing responsibility on individuals to manage their 4. Discussion
own health and said this creates an unrecognized “burden” on people
with disabilities. Hannah advised scaling-up CCS reminders for people This qualitative study reveals that the significant barriers to CCS
with disabilities. Winona, a white and Indigenous person with multiple experienced by people with disabilities during the COVID-19 pandemic
disabilities, recommended prioritizing people with disabilities’ access to perpetuated disability reproductive injustice. Findings indicate that
sexual and reproductive healthcare for health equity reasons: healthcare systems in Canada have failed to ensure the accessibility and
availability of CCS services and information for people with disabilities,
It is essential that we convey the message to patients with chronic
with disproportionate impacts for queer, racialized, and low-income
illness or disability that all of them matters. [We must] make it clear
people with disabilities. Provider distrust, deprioritized care, and dis­
to patients [with disabilities] that their reproductive health is just as
regarded autonomy in CCS exacerbated accessibility barriers and
important [as non-disabled patients]. [Providers should say], “we
compromised people with disabilities’ rights, justice, and wellness. To
know there’s a pandemic going on, but [ …] we don’t want you [a
attain disability reproductive justice, people with disabilities must be
person with disabilities] to feel like you have to wait to get basic care
centered as leaders in their care. Participants recommended making
that somebody who’s healthy and maybe has had no problems
healthcare facilities more accessible, improving diversity among pro­
before—maybe they can wait for a Pap.”
viders, training providers in disability and inclusive trauma-informed
care provision, prioritizing people with disabilities’ sexual and repro­
ductive health, and listening to, respecting, and collaborating with
3.5. Disregarded autonomy disabled people.
This study expands on qualitative research about disparities in access
People with disabilities felt their autonomy was disregarded in CCS to CCS for people with disabilities. Previous research has identified
before and during the COVID-19 pandemic when providers dismissed barriers to CCS for people with disabilities including inaccessible facil­
their concerns, disrespected them, and excluded from their care. After ities, competing healthcare priorities and the deprioritization of people
receiving abnormal CCS results, Stephanie explained that she “wanted to with disabilities’ sexual and reproductive healthcare, provider stigma
sit with the information” and explore different therapeutic options but and discrimination, a lack of disability knowledge among providers, and
felt pressured by providers to have an urgent and “traumatic” biopsy providers’ failure to listen to, respect, or value people with disabilities as
procedure; she said, “it was no longer my body or my choice.” Antonia experts in their own care (Chan et al., 2022; Edwards et al., 2020; Power
detailed a similar experience after receiving abnormal CCS results: et al., 2024). While often articulated as discrimination and stigma,
systemic ableism is a major barrier to sexual and reproductive health
The doctor [told] me, ‘You have to go through surgery where we
equity for people with disabilities, (Fletcher et al., 2023), and studies
scrape off those cells from your cervix.’ The way they handled the
with lesbian and racialized communities indicate that intersecting forms
situation scared me [and] made me go through a meltdown. More
of oppression compromise access to CCS (Brown et al., 2011; Curmi
than one doctor [said], ‘would you like to live just one more month?’
et al., 2014). The current study identifies inaccessibility, ableism and
[ …] I said, ‘it’s my body and I am going to decline the surgery, and I
intersecting forms of oppression, deprioritized care, and disregarded
would like another test done.’ They did another test, and I did not
autonomy as ongoing barriers to CCS for people with disabilities during
have precancerous cells. I’m so glad that I stood up for myself, [but] I
the COVID-19 pandemic. CCS is recommended for anyone with a cervix
was traumatized by the situation.
who has “ever had genital skin-to-skin contact with anyone of any
Sam explained how imposing care can compromise people with gender” (Canadian Cancer Society, 2024b), and it is concerning that
disabilities’ autonomy; they said, “as a disabled person, you sometimes several queer participants with disabilities in this study reported their
don’t get that choice [to say no to care].” Participants described pater­ providers discouraged them from accessing CCS.
nalistic encounters with providers when seeking CCS. Sarah said that Provider distrust was a key barrier to CCS for people with disabilities.
providers think she’s “dumb or treat [her] like [she’s] stupid” and dis­ While prior studies have demonstrated that medical mistrust negatively
missed her need for CCS during the pandemic; she said her concerns are impacts health behaviours and outcomes for women with marginalized
taken more seriously with a support person present. Irene noted that identities, this research has overlooked disability (Ho et al., 2022).
during procedures like CCS, providers can “talk over” people with dis­ People with disabilities who perceive discrimination are less likely to
abilities or exclude them by addressing their support persons instead; use healthcare services (Moscoso-Porras and Alvarado, 2018), and this
Irene said that providers can fail to “realize that [we] need [our] space study shows that provider distrust deters people with disabilities from
and independence.” accessing CCS. Provider distrust was propelled by disabled people’s
Participants were supported to exercise their autonomy in CCS by perceptions of ableism and intersecting forms of oppression like racism
providers who listened to, respected, and collaborated with them in care in healthcare. People with disabilities did not trust providers who
provision. For example, Rachel suggested using a Hygiene Sling device perpetuated ableism either intentionally or unintentionally by desexu­
to facilitate CCS, and providers acknowledged her contributions by alizing them and assuming they do not have sexual and reproductive
telling her it made the procedure “so much easier.” Rachel said, “When health needs.
you’re disabled, you have to be inventive. [We] know [our] bodies best.” Although access to preventative sexual and reproductive services like
Irene said providers could improve CCS by asking people with disabil­ CCS were disrupted for everyone during the initial months of the COVID-
ities what they need and talking to them directly instead of their support 19 pandemic in Canada, this study describes how disruptions to CCS
person. Participants advised that collaboration with disabled people was were uniquely experienced by people with disabilities throughout the
key to improving access to CCS and sexual and reproductive healthcare pandemic. COVID-19 infection prevention and control policies (e.g.,
more broadly: capacity restrictions, visitation bans) created new accessibility barriers

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M. Evans et al. Social Science & Medicine 369 (2025) 117807

to CCS by preventing people with disabilities from being accompanied to people with disabilities during the COVID-19 pandemic are conse­
healthcare facilities by support persons; this failure to accommodate quences of deeply rooted structural inequities that are not new. How­
people with disabilities’ needs indicates a lack of equity considerations ever, the COVID-19 pandemic introduced unprecedented measures that
in the Canadian pandemic response. The lack of disability supports exacerbated pre-existing disparities. In Canada, access to CCS was uni­
during the COVID-19 pandemic (e.g., support persons, sign language versally suspended during the initial months of the pandemic; when CCS
interpreters) exacerbated delayed access to CCS and made people with resumed mid-2020, restrictions on service delivery exacerbated inac­
disabilities feel as if their sexual and reproductive health and their lives cessibility and failed to account for health equity. In situations of crisis,
were devalued. people with disabilities are disproportionately impacted by changes in
to healthcare access (United Nations Enable, 2020). Indeed, many par­
4.1. CCS and disability reproductive justice ticipants in this study whose access to CCS was delayed in 2020 reported
they still had not accessed or had only recently accessed CCS in 2022 and
This study adds to recent calls for improving sexual and reproductive 2023, two to three years after CCS services had resumed. Restrictions on
health futures for people with disabilities by centering disability support persons had significant impacts on people with disabilities in
reproductive justice (Adams, 2023; Fletcher et al., 2023; Hassan et al., different ways—people with physical disabilities needed physical
2023). These findings illustrate the diverse applicability of the disability assistance, Deaf people and people with hearing loss needed sign lan­
reproductive justice framework for examining access to preventative guage interpreters, people with vision loss needed navigation assistance,
sexual and reproductive health services like CCS, extending the scope of and people with cognitive disabilities needed advocacy and
this framework beyond the original focus on legislation and jurispru­ decision-making support. Accommodations are necessary to make CCS
dence (Powell, 2022a). This study highlights CCS—and preventative more accessible and more equitable in the aftermath of a public health
sexual and reproductive healthcare more broadly—as a critical area of emergency, such as by allowing people with disabilities to access care
attention for the pursuit of disability reproductive justice. Disability with the assistance of a support person. Policymaking processes should
reproductive injustice in CCS shows how discrimination can be subtly consult and collaborate with disability communities. Without health
enacted in everyday systems and practices, in addition to the overt legal equity and accessibility considerations, future public health emergen­
denial of rights (e.g., compulsory sterilization and termination of cies will continue to exacerbate barriers to sexual and reproductive
parental rights). Barriers to CCS can manifest as “everyday healthcare like CCS for people with disabilities.
ableism”—quotidian, mundane, and informal enactments of ableist Current efforts to increase self-sampling HPV testing in Canada and
stigma, prejudice, and discrimination that are difficult to challenge globally may provide opportunities for improving access to CCS for
because there can be ambiguity of intention (Calder-Dawe et al., 2020). disability communities. HPV tests have similar specificity and sensitivity
Reflecting a participant’s characterization of her experience with for detecting abnormal cells as clinician-collected samples and are
CCS as enacting “low-key eugenics,” barriers to CCS for people with effective for reaching under screened populations through community
disabilities can be interpreted as perpetuating reproductive injustice clinics or mail-in methods (Bouvard et al., 2021; Costa et al., 2023).
through micro-eugenics. Different from macro-eugenics like forced Desires for autonomy are associated with intentions for self-sampling in
sterilization practices that have targeted people with disabilities as a Canada (Tatar et al., 2024). Improving access to self-sampling HPV tests
population, micro-eugenics limits the reproductive capacities of people may help health systems prioritize CCS accessibility and autonomy for
with disabilities on an individual level; for example, through everyday people with disabilities both during and beyond a pandemic. However,
medical practices like substitute decision-making for people with dis­ the accessibility of self-sampling (e.g., instructions in plain language,
abilities that can facilitate forced sterilization (Serrato Calero et al., sign language, and Braille, and physical assistance accommodations)
2021). Grounded in a thematic analysis of people with disabilities’ ex­ must be accounted for in efforts to scale-up HPV testing in Canada and
periences accessing CCS during the COVID-19 pandemic, this study globally.
suggests further broadening conceptualizations of micro-eugenics to Ableism in sexual and reproductive healthcare services must be
reflect ableism as an everyday medical practice that enacts barriers to addressed. This study shows that everyday ableism is experienced by
preventative sexual and reproductive healthcare servies, which people with disabilities in CCS through inaccessible services, intersec­
compromise disabled peoples’ reproductive autonomy and their right to tional forms of oppression, provider distrust, deprioritized care, and
sexual and reproductive healthcare and wellbeing. An attention to disregarded autonomy. The experiences of people with disabilities
everyday ableism and micro-eugenics is especially relevant in the indicate there is a need for healthcare providers to receive anti-ableist
context of the COVID-19 pandemic, where disabled lives have been training to disrupt discriminatory misconceptions and stereotypes,
devalued by medical rationing and triage practices that deprioritized such as assumptions that people with disabilities do not have sexual and
people with disabilities from receiving care (Andrews et al., 2021). reproductive health needs, and intersecting forms of oppression that
Barriers to CCS perpetuate disability reproductive injustice by shape people with disabilities’ diverse lived experiences with health­
devaluing the sexual and reproductive health, wellbeing, and lives of care. Anti-ableist training should be developed in partnership with
people with disabilities. CCS disparities have implications for increased disabled people; leveraging existing health models such as Patient
risk of cancer, later-stage diagnosis, and mortality. While no participants Family Advisory teams can provide a starting point.
described receiving a cancer diagnosis after COVID-related delays to
CCS, many were still waiting for CCS, test results, or related treatment at 4.3. Limitations and further research
the time of their interview, all of which were conducted in the third year
of the COVID-19 pandemic. COVID-19 pandemic-related delays to CCS This study focused on the experiences and perceptions of people with
are associated with negative health outcomes, including elevated inci­ disabilities and does not account for the experiences or perspectives of
dence of precancerous lesions (Martins et al., 2023) and preventable providers. While the sample was diverse, some disability communities
cancer mortalities (Maringe et al., 2020). Further research is needed to are underrepresented (e.g., sensory disabilities) or unrepresented (e.g.,
examine whether the COVID-19 pandemic widened preexisting dispar­ people with cognitive disabilities like Down Syndrome that have high
ities in cancer incidence and mortality for people with disabilities. support needs). Their experiences may be different than the commu­
nities represented in this sample. The sample is limited in reflecting the
4.2. Recommendations racial and ethnic diversity of the Canadian population and may not
adequately reflect the intersectional experiences of diverse commu­
Access to CCS is critical for achieving the global objective of elimi­ nities. Most participants resided in highly populated areas of Canada (i.
nating cervical cancer (WHO, 2023). Many of the barriers to CCS for e., cities and the province of Ontario), and people living in other

6
M. Evans et al. Social Science & Medicine 369 (2025) 117807

provinces, territories, and rural/remote areas with more limited Resources, Formal analysis, Conceptualization. Kyara J. Liu: Writing –
healthcare resources may be underrepresented. Most participants had original draft, Formal analysis, Conceptualization. Alexandra Rego:
higher education levels, and the experiences of people with lower edu­ Writing – review & editing, Validation, Investigation, Formal analysis.
cation levels may be underrepresented. Future research on CCS should Nkem Ogbonna: Writing – review & editing, Validation, Investigation.
explore provider perspectives, experiences of underrepresented com­ Sidrah K. Zafar: Writing – review & editing, Resources, Project
munities of people with disabilities, and the accessibility of HPV self- administration. Hilary K. Brown: Writing – review & editing, Super­
sampling. vision, Resources, Funding acquisition, Conceptualization.

5. Conclusion Funding

This article applies the disability reproductive justice framework to This study was supported by a Canadian Institutes of Health Research
analyze the CCS experiences of people with disabilities during the Operating Grant on Emerging COVID-19 Research Gaps & Priorities
COVID-19 pandemic. This article situates CCS as a disability reproduc­ (Funding Reference # 179437). This research was undertaken, in part,
tive justice concern and argues that barriers to CCS related to inacces­ thanks to funding from the Canada Research Chairs Program to Hilary K.
sibility, intersectional forms of oppression, provider distrust, Brown (2019-00158). The content is solely the responsibility of the
deprioritized care, and disregarded autonomy perpetuated disability authors and does not necessarily represent the official views of the
injustice through everyday ableism and micro-eugenics. Recommenda­ funders.
tions include prioritizing the accessibility of sexual and reproductive
health services for disabled people in the aftermath of public health Declaration of interest statement
emergencies. Collaborating with disability communities and prioritizing
health equity could help mitigate the disruptive impacts of future in­ The authors have no conflicts of interest to disclose.
terruptions to CCS and sexual and reproductive health service delivery
more broadly for people with disabilities and other underserved Acknowledgements
communities.
The authors acknowledge the study participants for their essential
CRediT authorship contribution statement contributions to this research and express thanks to the members of the
study advisory committee who assisted with recruitment and develop­
Meredith Evans: Writing – review & editing, Supervision, ment of the data collection materials.

Appendix

Table 1
Sociodemographic characteristics of the sample (N = 40)

N (%)

Disability*
Physical 26 (65.0)
Mental health 19 (47.5)
Cognitive 17 (42.5)
Sensory 3 (7.5)
Race*
White 29 (72.5)
Black (including African, Afro and Afro-Indo Caribbean, and Black mixed-race) 6 (15.0)
East or Southeast Asian 3 (7.5)
Indigenous 2 (5.0)
South Asian 2 (5.0)
Middle Eastern 1 (2.5)
Gender
Women 32 (80.0)
Gender-diverse people (genderqueer, gender-questioning, non-binary, transmasculine, transgender men, and Two-spirit Indigenous persons) 8 (20.0)
Sexuality
Straight (heterosexual) 26 (65.0)
Queer (including asexual, gay, lesbian, bisexual, and pansexual) 14 (35.0)
Relationship Status
Married or cohabitating common-law 17 (42.5)
Single (never married) 11 (27.5)
Long term relationship 6 (15.0)
Separated, widowed, or divorced 6 (15.0)
Education
Undergraduate or postgraduate university degree 18 (45.0)
Community college or trade school 18 (45.0)
High school 4 (10.0)
Province
British Columbia 5 (12.5)
Saskatchewan 5 (12.5)
Ontario 28 (70.0)
New Brunswick 1 (2.5)
Newfoundland and Labrador 1 (2.5)
(continued on next page)

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M. Evans et al. Social Science & Medicine 369 (2025) 117807

Table 1 (continued )
N (%)

Locality
Small town (between about 1000 and 29,999 people) 5 (12.5)
Medium sized city (between about 30,0000 and 99,999 people) 6 (15.0)
Big city (between about 100,000 and 499,999 people) 14 (35.0)
Very big city (more than 500,000 people) 15 (37.5)
*Participants reported multiple disabilities and racial identities, therefore the sum of these categories exceeds N = 40 (100%).

Data availability El-Zein, M., Ali, R., Farah, E., Botting-Provost, S., Franco, E.L., Survey Study Group,
2023. Pan-Canadian survey on the impact of the COVID-19 pandemic on cervical
cancer screening and management: cross-sectional survey of healthcare
The data that has been used is confidential. professionals. Elife 12, e83764. https://doi.org/10.7554/eLife.83764.
Evans, M., Rego, A., Ogbonna, N., Welsh, K., Zafar, S., Barker, L., Berndl, A., Du Mont, J.,
Lunsky, Y., McPherson, A., Tarasoff, L., Vandermorris, A., Brown, H.K., 2024.
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