THE ROMANTIC AND SEXUAL LIVES OF ADULTS WITH 

INTELLECTUAL DISABILITY 

 

 



 

THE ROMANTIC AND SEXUAL LIVES OF ADULTS WITH 

INTELLECTUAL DISABILITY IN ONTARIO, CANADA 

 

 

 

 

By ALAN SANTINELE MARTINO, B.A. (Hons.), M.A. 

 

 

 

 

A Thesis Submitted to the School of Graduate Studies in Partial Fulfilment of the 

Requirements for the Degree Doctor of Philosophy 

 

 

 

 

McMaster University © Copyright by Alan Santinele Martino, October 2020 

 

 

 

  



Ph.D. Thesis – A. Santinele Martino; McMaster University - Sociology 

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McMaster University DOCTOR OF PHILOSOPHY (2020) Hamilton, Ontario 

(Sociology) 

 

 

TITLE: The Romantic and Sexual Lives of Adults with 

Intellectual Disability in Ontario, Canada  

 

AUTHOR: Alan Santinele Martino, B.A. (St. Lawrence 

University), M.A. (University of Lethbridge)  

 

SUPERVISOR: Dr. Melanie Heath  

 

COMMITTEE MEMBERS: Dr. Tina Fetner 

Dr. Ann Fudge Schormans  

 

EXTERNAL REVIEWER: Dr. Nancy Fischer 

 

NUMBER OF PAGES: v, 184 

 

  



Ph.D. Thesis – A. Santinele Martino; McMaster University - Sociology 

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Abstract 

The intersection of disability and sexuality remains a taboo topic. Along with this 

taboo, people with intellectual disabilities are rarely afforded the opportunity to 

share their experiences and desires when it comes to their intimate lives. This 

research examines the romantic and sexual lives of adults with intellectual 

disabilities in Ontario, Canada, by putting into conversation theories from the 

sociology of sexualities and critical disability studies. It uses a sexual fields 

analytic framework (Green, 2014) to explore the consequences of sexual 

stratification on the experiences of disabled people. Drawing on semi-structured 

interviews with 46 adults with intellectual disabilities, this research explores how 

they are kept out of sexual fields through a series of disabling social processes. It 

also examines how participants make sense of their gender and sexual identities 

based on gender habitus acquired in their lives and how they are often confined to 

“hetero-romantic” forms of sexual expression and traditional gender roles. 

Finally, this project explores how participants navigate the sexual fields available 

to them and their strategies for negotiating those fields. This research brings to 

view previously unexplored sexual fields within the existing sexual fields 

literature. I discuss what I call intellectual disability sexual fields, spaces 

exclusively for people with intellectual disabilities, as well as more mainstream 

sexual fields. 

 

 

  



Ph.D. Thesis – A. Santinele Martino; McMaster University - Sociology 

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Dedication 

 

To Bruno Santinele Martino, my loving brother and best friend. 

 

  



Ph.D. Thesis – A. Santinele Martino; McMaster University - Sociology 

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Acknowledgements 

This dissertation means a lot to me and I could not have done it without 

the commitment, mentorship, and support of many people in my life. I have so 

many to thank for and not enough space here.  

First, I would like to express my deepest appreciation to my supervisory 

committee. Thanks to my supervisor, Dr. Melanie Heath, whose feedback, 

support, and mentorship were invaluable. I cannot thank you enough for reading 

my multiple drafts, asking me the hard questions, and being patient with me. I am 

also extremely grateful to Dr. Tina Fetner. You challenged me and made me a 

more confident scholar. Thanks for being this kind and committed committee 

member. I am also deeply indebted to Dr. Ann Fudge Schormans who has been 

such a incredibly generous mentor to me. I cannot express my gratitude enough 

and I look forward to continue co-authoring papers with you. Appreciation is also 

due to Dr. Nancy Fischer for her insightful comments and questions.  

Thanks to the faculty members at the Department of Sociology at 

McMaster University, especially Dr. Dorothy Pawluch, Dr. Neil McLaughlin, Dr. 

Marisa Young, and Dr. Lisa Kaida. Many thanks to Corinne Jehle and Olga 

Cannon for their warm support and for pushing me to get this done. I am also 

indebted to my incredible colleagues: Dr. Nicole Andrejek, Dr. Casey Scheibling, 

Allison Leanage, Sarah May Lindsay, Andrey Kasimov, Leili Yousefi, Dr. Julie 

Gouweloos, Dr. Rachel Barken, Dr. Becky Casey, Dr. Erica Speakman, Dr. 

Jessica Braimoh, Dr. Allyson Stokes-McLevey, Dr. John McLevey, Dr. Katie 

Duong, Dr. Margaret Campbell, and Rod Missaghian. I am also grateful to my 

ASA colleagues and friends, especially Kyle Shupe, Brittney Miles, Jeremy 

Brenner-Levoy, Ian Callahan, Dalton Stevens, and Jen Brooks.  

I am also thankful to all of those who have served as mentors and role 

models to me at different points in this journey, including Dr. Patrice LeClerc, Dr. 

Karen Yoshida, Dr. Patty Douglas, Dr. Heather Dillaway, Dr. Brian Grossman, 

Dr. Kirsty Liddiard, Dr. Allison Carey, and Dr. Laura Mauldin. Thanks also to all 

the members of the Re:searching for LGBTQ2S+ Health team at the University of 

Toronto.  

I wish to acknowledge my family, especially my brother (Bruno), mother 

(Geni), father (Gerson), and grandmother (Ariadene). Their unconditional love 

and acceptance have motivated to continue my studies. I am grateful to my 

partner, Tony, who has supported my career and mental health. Thanks to my dog, 

Mojo, for his companionship, cuddles, and comfort. Finally, I am appreciative of 

my friends, including Namrata Bagaria, Anona Kosmack, Jan Van Heuzen, 

Valérie Auger-Voyer, and Jennifer Reynolds.  

Thanks to all the self-advocacy groups and organizations that supported 

this project. Finally, and most importantly, I could not have completed this 

dissertation without the generosity and openness of the research participants. I 

appreciate you entrusting me with your sexual stories and I promise to do my best 

to share your stories with respect and care. Your stories shall be heard!    



Ph.D. Thesis – A. Santinele Martino; McMaster University - Sociology 

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Chapter 1: Introduction 

 

Introduction 

 

During an improvisation exercise in the arts program of a community-based 

organization in upstate New York, a young man with Down syndrome takes the 

stage. Accompanied by two other actors with intellectual disabilities, the young 

man starts his scene acting out an encounter with friends. The conversation goes 

on until the friends start talking about romantic relationships. The young man then 

asserts, “Love is natural, we all love.” The rest of the room, consisting of other 

disabled people, organization staff, and volunteers smile in agreement with the 

man’s statement. A person in the room is heard saying, “Aww!” Just a few 

seconds later, as the scene proceeds, the young man raises his hand up in the air 

and enthusiastically adds, “S.E.X., that’s what we want.” The statement 

completely changes the vibe in the room, now filled with discomfort and nervous 

laughter. Not knowing what to do, the lead staff member in the room quickly 

changes the topic of the conversation by stating, “Isn’t the weather beautiful 

today?” The scene then ends and we move on to the next group of actors.  

 

 I was a volunteer in that room when that moment took place. I felt 

extremely uncomfortable with how this young man’s feelings and sexual desires 

were simply shut down, treated as being “out of place”. I wondered to myself 

what message we are sending to this young man and others in the room when we 

treat sexuality that way. There must be a better way of moving forward that 

acknowledges the sexuality of disabled people. That particular episode sparked an 

interest in me to explore the intersection of intellectual disability and sexuality.  

 

For this dissertation, I have spoken with many community members with 

intellectual disabilities who illustrate the multiple barriers that continue to 

discourage and block disabled people from having an intimate life. Sexuality and 

sexual expression are important parts of everyday life and, above all, a 

fundamental human right (Rogers, 2016; Whittle & Butler, 2018). Yet, when it 

comes to adults with intellectual disabilities, the same expectations do not seem to 

apply. On the one hand, people with intellectual disabilities are often seen as 

being vulnerable, child-like, and innocent and thus unable to supposedly make 

informed decisions regarding their intimate lives (Ditchman et al., 2017; Murphy 

& Young, 2005; Swango-Wilson, 2009). On the other hand, they are also seen as 

having problematic, dangerous, and uncontrollable sexualities (Aunos & Feldman, 

2002).  

 

People with intellectual disabilities have the same romantic and sexual 

desires as non-disabled people. Their sexualities, however, are shaped by myths 

that desexualize and stigmatize them. As a social group, they have often been 



Ph.D. Thesis – A. Santinele Martino; McMaster University - Sociology 

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denied the opportunity to form romantic and sexual lives (Swango-Wilson, 2009) 

and have experienced repression and institutionalization to curtail their sexual 

expression (McDaniels & Fleming, 2016). Furthermore, the intersection of 

disabilities and sexualities remains a taboo topic in our society (Medina-Rico, 

López-Ramos, & Quiñonez, 2018). Research on this topic remains under-

researched and under-theorized in both the sociology of sexualities and critical 

disability studies, resulting in significant gaps in our understanding of the sexual 

and intimate lives of disabled people (Erel et al., 2011; Kattari, 2015; Liddiard, 

2011, 2013; McRuer & Mollow, 2012).  

 

To address this gap, this dissertation examines the sexual and intimate 

lives of adults with intellectual disabilities by putting into conversation theories 

from both the sociology of sexualities and the field of critical disability studies. 

To accomplish this, I conducted in-depth interviews with 46 adults with 

intellectual disabilities in Ontario to better understand their experiences, 

aspirations, challenges, and forms of resistance to maintain sexual lives. The first 

chapter provides a brief overview of the existing literature on intellectual 

disability and sexuality. I also introduce the theoretical framework guiding this 

project. Finally, I share the roadmap of this dissertation.  

   

Intellectual Disability and Sexuality 

 

The sexual and intimate lives of people with intellectual disabilities have been 

marked by a history of protectionism, infantilization, and paternalism (Winges-

Yanez, 2014), resulting in experiences of sterilization without their consent and 

sometimes without their knowledge, institutionalization, and sexual repression 

(McDaniels & Fleming, 2016). People with intellectual disabilities have 

experienced significant restrictions in terms of exploring their sexuality, accessing 

and navigating sexual sites and sexual fields, and developing and negotiating their 

sexual capital compared to non-disabled people. Whether people with intellectual 

disabilities are perceived to be “potential victims” or are expected to express 

“unacceptable sexual behaviors”, their sexual rights are commonly restricted 

(Noonan & Gomez, 2011, p. 177; Gill, 2015). 

 

As a whole, the empirical literature looking at the sexual and intimate lives 

of people with intellectual disabilities has taken a narrow focus (Gill, 2015). 

Studies have focused on questions of sexual abuse of disabled people (Dickman & 

Roux, 2005) as well as disabled sexual offenders and their potential risk to other 

community members (Cantor et al., 2005; Lunsky et al., 2007; Steptoe et al., 

2006). Studies have also explored the perceptions and attitudes of a range of 

social actors regarding the sexualities of people with intellectual disabilities 

including parents and family members (Dupras & Dionne, 2014; Pownall, Jahoda 

& Hastings, 2012), support workers (Gilmore & Chambers, 2010; Meaney-

Tavares & Gavidia-Payne, 2012), teachers and special educators (Parchomiuk, 



Ph.D. Thesis – A. Santinele Martino; McMaster University - Sociology 

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2012; Wilkenfield & Ballan, 2011), university students (Franco, Cardoso, & Neto, 

2012), social service providers (Bazzo et al., 2007), and the general public 

(McConkey & Leavey, 2013; Sankhla & Theodore, 2015).  

 

People with intellectual disabilities experience countless barriers to 

becoming and remaining sexual (Bahner, 2015; Gill, 2015; Kulick & Rydström, 

2015; Sanders, 2007; Shakespeare, 2000; Shuttleworth & Sanders, 2010). This 

includes living arrangements that are not conducive for people with intellectual 

disabilities to maintain romantic relationships and experience sex (Eastgate et al., 

2012; Frawley, 2003; Löfgren-Mårtenson, 2004), a consistent lack of access to 

(appropriate) sex education (Galea, Butler, & Iacono, 2004; Murphy & 

O’Callaghan, 2004), workers and family members who may struggle with 

balancing letting people with intellectual disabilities make their own decisions 

regarding their sexual lives with their own worries and desire to protect disabled 

people (Löfgren-Mårtenson, 2004), and the experience of growing up with 

negative messages about their sexualities and consequently developing negative 

beliefs and attitudes toward sexuality (Cuskelly & Bryde, 2004). 

 

In all, these barriers faced by people with intellectual disabilities have real 

consequences on their sexualities as “repeated experiences of exclusion, 

discrimination, and ableism can impact one’s self-confidence and belief in one’s 

self as a sexual being” (Jungels & Bender, 2015, p. 174; Azzopardi-Lane & 

Callus, 2014; Bender, 2012; May & Stone, 2010). As Shakespeare (2000) notes, 

however, disabled people are “systematically devalued and excluded by modern 

Western societies” (p. 161). One could argue that such devaluation and exclusion 

can have an impact on the experiences of people with intellectual disabilities, 

including their willingness and ability to auspiciously “play the field”. This 

dissertation examines the consequences of disenfranchising the rights of adults 

with intellectual disabilities to be sexual actors. It explores how such 

disenfranchisement influences their desire to be active sexual actors within sexual 

fields, shapes their strategies and choices for sexual partners, and influences their 

sexual practices, perhaps pushing them to engage in sexual practices that they do 

not desire but are willing to do in order to satisfy potential sexual partners.  

 

Theorists in disability studies have considered the question of whether 

disabled people should attempt to join mainstream understandings of sexualities 

or challenge ableist understandings of sexualities and claim their own sexual 

culture (McRuer & Mollow, 2012; Shakespeare, 2000; Siebers, 2008). For 

example, Siebers (2008) talks about sexual culture in terms of exploring how 

sexualities can take a different shape for disabled people and how the sexualities 

of disabled people may challenge ableist sexual norms. Building on that insight, 

McRuer (2006) has proposed a queercrip theory that sits at the intersection of 

disability studies and queer studies. Disabled people have shown both agency and 

creativity by reconstructing sex and sexualities in ways that go beyond normative 



Ph.D. Thesis – A. Santinele Martino; McMaster University - Sociology 

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sexualities (Fritsch et al., 2016; Guter & Killacky, 2004; McRuer & Mollow, 

2012). These scholars have not only affirmed how disabled people are “subjects 

and objects of a multiplicity of erotic desires and practices” (McRuer, 2011, p. 

107-108) but have also theorized how disability can “transform sex, creating 

confusions about ‘what and who is sexy’ and ‘what counts as sex’” (McRuer & 

Mollow, 2012, p. 32; McRuer, 2011; Shakespeare, 2000; Wilkerson, 2011).  

 

This scholarship in disability studies has predominantly focused on the 

sexual experiences of people with physical impairments, failing to study the 

experiences of people with intellectual disabilities (Abbott, 2015; Löfgren-

Mårtenson, 2013). As Löfgren-Mårtenson (2013) articulates, crip theory often 

“proceeds from people with physical disabilities, i.e., individuals who have a 

voice, who can write about their situation, and organize dissent, and who is often 

found in the international disability rights movement” (p. 420). This dissertation 

highlights how some people with intellectual disabilities attempt to “crip” 

sexualities. While most participants strived to achieve normative performances of 

gender and sexuality when participating in sexual fields, a few participants shared 

examples of how they attempted to question and transform those very normative 

constructions. These examples provide new insights in terms of how sexual actors 

navigate sexual fields.  

 

Whereas disability studies has provided limited structural accounts of the 

ways that sexualities are stratified among people with intellectual disabilities, a 

sexual fields framework provides a more systematic approach to the study of 

sexual stratification through its multi-level approach, allowing us to have a more 

complete understanding of our collective sexual life (Green, 2014). The sexual 

fields framework, as Taylor (2014) suggests “likely will set the research agenda 

for the sociological study of sexuality over the next several decades”, making this 

a promising avenue for theoretical exploration (p. 11). This research is a part of 

my program of research, which has primarily focused on bridging disability 

studies and the sociology of sexualities, two fields that have only recently been 

put into dialogue, in order to theorize and empirically examine the perspectives, 

challenges, and triumphs of people with intellectual disabilities concerning 

sexuality. This is an exciting and growing area of research that reflects the 

complexities and importance of addressing issues in the private sphere.  

 

My research also contributes to a growing body of literature bringing an 

intersectional approach to the sociology of sexualities, focusing on how 

sexualities intersect with disability. It addresses the need for more research that 

specifically focuses on sexuality as part of the everyday lives of people with 

intellectual disabilities and examines how that sexuality is structured within a 

broader society that marginalizes the sexuality of people with intellectual 

disabilities. By applying the sexual fields framework to explore the consequences 

of sexual stratification on the sexual and intimate experiences of people with 



Ph.D. Thesis – A. Santinele Martino; McMaster University - Sociology 

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intellectual disabilities, this dissertation contributes to the current literature by 

highlighting instances of agency or disempowerment experienced by people with 

intellectual disabilities including their complex strategies to remain sexual.  

 

I would like to acknowledge right from the start the concern I have for the 

ways that disabled people are made vulnerable. Family members and service 

providers often struggle to find a balance between protecting disabled people from 

risk and harm and respecting their rights to make their own decisions (including 

their right to make mistakes) in their intimate lives (Brown & McCann, 2018). We 

know that people with intellectual disabilities are at a higher risk of experiencing 

different forms of abuse compared to non-disabled people (Bryne, 2018; Shapiro, 

2018). We know that sexual violence among the general population tends to be 

underreported and underprosecuted (McGell et al., 2002; Myhill & Allen, 2002). 

This challenge of violence disclosure can be further accentuated for people with 

intellectual disabilities. Disabled people are more likely to be abused by people 

providing them care (e.g., caregivers, family members) (McCormack et al., 2005; 

Sobsey, 2006). This can make some disabled people reluctant to report such 

instances (Akbas et al., 2009). People with intellectual disabilities are also less 

likely to be believed when they do disclose and sometimes have to remain living 

with perpetrators (Shapiro, 2018). In addition, the literature suggests that very few 

cases are actually addressed. For example, out of 1,400 sexual abuse yearly 

reports against people with intellectual disabilities in the United Kingdom, 

typically only six percent make it to court and one percent result in conviction 

(Bryne, 2018).   

 

The challenge, however, is that the focus on risk and harm can also lead to 

a lack of access to sexuality and intimacy among disabled people. While my 

research shows that those risks and harm were present in some of the participants’ 

accounts, in this context of increased risk, however, we should still ask ourselves 

whether it is right to deny disabled people access to an intimate life as a means for 

keeping them safe, or if there is perhaps a different path forward for a safe and 

satisfying sexual life for disabled people. People with intellectual disabilities are 

entitled to intimate citizenship (Ignagni et al., 2016), which refers to our “rights to 

choose what we do with our bodies, our feelings, our identities, our relationships, 

our eroticisms, and our representations” (Plummer, 1995, p. 17). People with 

intellectual disabilities have also consistently noted their desire to be heard and 

have their desires respected (Bane et al., 2012; Fitzgerald & Withers, 2013). 

 

Theorizing Disabled People’s Sexualities: The Sexual Fields Framework  

 

The sexual fields framework has been responsible for a “landmark theoretical 

turn” within sociology by focusing on sexual stratification as a “particular kind of 

social order in its own right”, an area for which “sociology, in general, and social 

theory, more specifically, have paid too little attention” (Green, 2011, p. 246). 



Ph.D. Thesis – A. Santinele Martino; McMaster University - Sociology 

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Though not a simple task, the framework brings to view the connection between 

individual desire and sexual experience on one hand and the collective sexual life 

as a system of stratification on the other (Green, 2008a, 2011). In their pursuit of 

sexual partnering, people navigate sexual fields, which “are by their nature arenas 

of sociality, pleasure seeking, and competition” that are inherently uneven (Green, 

2008b, p. 35). “Playing the field” requires that sexual actors understand the 

structure of the sexual field itself, including who is desirable and where they fit 

within the field (Green, 2011). Lacking that “feel for the game” can lead to forms 

of disadvantage that shape sexual actors’ experiences and opportunities for 

partnering.  

 

Sexual capital shapes who is desirable within sexual fields and positions 

people differently within sexual fields (Craig, 2016; Green, 2008a). Sexual capital 

should be understood as a person’s attributes, resources, and competencies that 

create an erotic response in another and provide status to sexual actors within 

sexual fields (Green, 2014; Leschziner & Green, 2013). Rather than approaching 

desire as an individual characteristic, the sexual field framework places desire and 

sexuality as a part of erotic habitus (Craig, 2016), a concept that refers to 

unconscious dispositions that predispose sexual actors toward particular kinds of 

sexual practices and partners. These dispositions are tied to larger social structures 

and hierarchies of desirability that reproduce inequalities (Green, 2008a, 2014). 

 

Previous studies using the sexual fields framework have significantly 

contributed to the sociology of sexualities by empirically demonstrating how 

desire and desirability are collectively produced (Moon, 2015). This body of 

literature has illuminated, for instance, new forms of sexual capital (e.g., alien 

sexual capital, interracial sexual capital; Farrer, 2010), the complex dynamic 

parameters of desirability and the interactional underpinnings of desires and 

desirability in sexual fields (Weinberg & Williams, 2014), how sexual fields may 

produce and/or accommodate desires that are not mainstream (Farrer & Dale, 

2014; Weinberg & Williams, 2014), instances that suggest that not all sexual 

fields are sites of hierarchies and struggles (Hennen, 2014), how sexual actors 

exchange and convert forms of capital to increase their erotic capital within sexual 

fields and their chances for partnering (Craig, 2016; Farrer, 2010; Willey, 2010), 

the ways that social locations like race, gender, ethnicity, and citizenship shape 

the experiences of sexual actors in sexual fields (Farrer & Dale, 2014; Green, 

2008b; Schilt & Windsor, 2014), and the consequences to the psychological and 

emotional well-being of individuals attempting to maximize their erotic capital 

(Farrer, 2010; Green, 2008a). This literature has also mapped out sexual circuits – 

sexual sites that are spread out and where people who may not know each other 

frequently rub shoulders (Adam & Green, 2014) – and explored the anatomy of 

particular sexual fields including their unique tiers of desirability and distributions 

of erotic capital (Green, 2008b, 2014). 

 



Ph.D. Thesis – A. Santinele Martino; McMaster University - Sociology 

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Alternatively, the current literature also has limitations especially when 

applying the sexual fields framework to the romantic and sexual experiences of 

people with intellectual disabilities. This dissertation also illuminates how certain 

aspects of disability trouble and complicate some assumptions in the sexual fields 

literature. For instance, the existing research on intellectual disability and 

sexuality suggests that the patterns of romantic and sexual relationships of people 

with intellectual disabilities are considerably different from that of non-disabled 

people as questions of when, where, how, and with whom to be sexual are 

significantly more complex and the choices more restricted for people with 

intellectual disabilities (Gill, 2015; Kulick & Rydström, 2015; Löfgren-

Mårtenson, 2013). The goal of this research is to demonstrate how this dialogue 

between the sociology of sexualities and critical disability studies can provide a 

new conceptual vocabulary for theorizing the social forces that structure (and 

disadvantage) the sexualities of disabled people as well as the embodied 

experiences and practices of this social group.  

 

Bringing Together Disability and Sexual Fields  

 

People with intellectual disabilities experience significant restrictions in accessing 

opportunities for sexual exploration, experimentation, and relationships, which 

impacts their sexual capital and gender/erotic habitus. When automatically 

understood as not having sexual and romantic desires, or being child-like, people 

with intellectual disabilities are presumed to have no need for developing a gender 

and sexual identity and sexual capital, nor accessing sexual fields. Conversely, if 

perceived as having a deviant sexuality, people with intellectual disabilities’ 

sexual capital is one to be contained, discouraged, and restricted. 

 

The current sexual fields literature, however, has not taken into account 

the consequences of such historical marginalization and exclusion on disabled 

sexual actors within sexual fields. The line separating public and private spaces is 

often blurred in the lives of people with intellectual disabilities who may live with 

and receive care from family members, non-family members, and support 

workers. Due to protectionism, infantilization, and other restrictions, they may 

also experience a lack of privacy and decision-making power (Gill, 2015; 

Hollomotz & The Speakup Committee, 2009; Lesseliers & Van Hove, 2002). For 

some disabled people, regardless of their age, various forms of sexual expression, 

which are often taken for granted in previous studies using the sexual fields 

framework, including accessing sexual sites on their own or having casual sex, 

may be discouraged or prohibited (Löfgren-Mårtenson, 2013). As the sexual 

fields framework has been mostly used as a “theory of only male sexuality”, more 

specifically (non-disabled) gay men sexuality (Martin, 2014), it is important to 

apply the framework to other groups of people (Paik, 2016; Plante, 2015) 

including disabled people who can bring to view other arenas of sexual 

organization and help refine the framework’s main sensitizing concepts. 



Ph.D. Thesis – A. Santinele Martino; McMaster University - Sociology 

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As Ignagni et al. (2016) notes, we know “little about the spaces [disabled] 

people may easily access and claim, and how these may shape intimate 

subjectivities, relations and practice” (p. 132). Thus, it is relevant to explore the 

mainstream and disability-specific sexual fields that people with intellectual 

disabilities navigate or aspire to navigate in their pursuit of love, intimacy, and 

sex. Similar to previous studies drawing on sexual fields, I too found forms of 

“specialized erotic worlds” (Green, 2008b, p. 27) that disabled people with 

intellectual disabilities claim and navigate.  

 

There have also been a few studies exploring how some people with 

intellectual disabilities use communication technologies for accessing potential 

partners (Löfgren-Mårtenson, 2008; Löfgren-Mårtenson, Sorbring, & Molin, 

2015). Löfgren-Mårtenson (2008), for instance, found that some people with 

intellectual disabilities viewed the Internet as a place where they can be “like 

everybody else”, thus increasing their chances of partnering (p. 125). Some 

participants have used the Internet and mobile dating applications as sexual fields 

and, for that reason, it is also important to look at virtual spaces. By thinking 

about sexual fields – both in terms of physical and online sexual sites – we can 

better understand the barriers and opportunities for people with intellectual 

disabilities to access spaces for sexual exploration and encounters as well as how 

they experience and negotiate these spaces. 

 

Furthermore, we have limited knowledge about the dating patterns of 

people with intellectual disabilities, including how they select their romantic and 

sexual partners as well as how they make sense of and reflect on their own 

position as a sexual actor within hierarchies of desirability (Bates et al., 2016). 

Not surprisingly, though, it has been suggested that people with intellectual 

disabilities have their own “hierarchy of attraction”, or desirability, when 

selecting partners (Löfgren-Mårtenson, 2004, p. 203). Therefore, my dissertation 

contributes to the sociological literature on sexualities by investigating who and 

what people with intellectual disabilities desire as sexual actors, how they assess 

their sexual capital, as well as that of others, how they decide whether to pursue 

certain potential sexual partners, how they develop their own hierarchies of 

desirability and how they respond to hegemonic hierarchies of desirability, and 

what strategies they use to increase their chances of partnering.  

 

The sexual fields framework helps us to better understand the inequalities, 

power struggles, challenges, resources, and forms of resistance experienced by 

disabled people. On a macro level, people with intellectual disabilities are 

embedded within larger sexual stratification systems. The sexual fields framework 

points us to the “hegemonic systems of judgment related to desirability” that lead 

to different probabilities for partnering for individuals and social groups (Green, 

2011, p. 246-247). Within these hegemonic systems, sexual actors are stratified 



Ph.D. Thesis – A. Santinele Martino; McMaster University - Sociology 

 9 

and granted differential status based on their social location, including age, race, 

and class  (Green, 2011), in addition to disability. At the same time, an analysis of 

people with intellectual disabilities’ stories of rejections and successes in the 

pursuit of love and intimacy highlights how they resist or reproduce constructions 

of sexualities, privileged forms of sexual capital, and hierarchical relations of 

desirability in their everyday lives. The sexual fields approach allows us to 

explore what sexual actors desire in a sexual partner and what they need to do to 

attract and obtain such a partner (Green, 2015). Considering their marginalized 

sexualities, people with intellectual disabilities often occupy a position of low 

sexual status, which has a deep impact on their self-confidence as a sexual agent, 

shaping their willingness to play the field and their agency within sexual 

encounters (Green, 2014). 

 

Research Questions 

 

My goal was to better understand the romantic and sexual lives of adults with 

intellectual disabilities and the social forces shaping those sexualities. More 

specifically, my research addressed three main interrelated research questions 

concerning the intimate lives of disabled people: 

 

1. What are some of the systematic barriers that prevent adults with intellectual 

disabilities from participating in sexual fields?  

2. How do people with intellectual disabilities make sense of their gender and 

sexual identities based on gender habitus acquired in their lives?  

3. How do adults with intellectual disabilities navigate the mainstream and 

specialized sexual fields available to them to increase their chances of 

intimate partnering? 

 

Overview of the Dissertation 

 

This dissertation is divided into six chapters. Chapter 1 presents the research topic 

and questions, introduces the theoretical framework, and highlights the 

significance of this project. Chapter 2 introduces the methodological 

considerations that underpin this project and reports on my strategies in terms of 

recruitment, reflexivity, ethical considerations, interviewing, and the analytic 

framework.       

 

Chapter 3 attends to the particular disabling social processes including 

infantilization, lack of information, forms of boundary work, and psycho-

emotional disablism, which keep people with intellectual disabilities out of sexual 

fields. Drawing on the notion of sexual access, I address a gap in the existing 

sexual fields literature in terms of theorizing the experiences of sexual actors who 

do not participate in those sexual fields, whether by their own choice or, more 

importantly, by the choice of others in their lives.  



Ph.D. Thesis – A. Santinele Martino; McMaster University - Sociology 

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Chapter 4 turns attention to the experiences of participants who have 

accessed sexual fields, paying particular attention to how they make sense of their 

gender and sexual identities based on gender habitus acquired in their lives. I 

highlight how people with intellectual disabilities are often confined to “hetero-

romantic” forms of love and traditional ideas around gender identity and gender 

roles. Many participants had been offered very few options in terms of “doing 

gender” and were often held accountable to properly performing those 

expectations.   

 

Chapter 5 focuses on how participants navigate and negotiate the sexual 

fields available to them. This chapter brings to view previously unexplored sexual 

fields within the existing sexual fields literature. Specifically, I discuss what I call 

intellectual disability sexual fields, spaces exclusively for people with intellectual 

disabilities such as group homes and day programs. Additionally, I discuss 

participants’ experiences negotiating more mainstream virtual and physical sexual 

fields available to them. 

 

Chapter 6 highlights the main contributions of this research, addresses the 

limitations of this study, discusses potential applications for practice, and 

proposes directions for future studies.  

 

 

 

 

 

  



Ph.D. Thesis – A. Santinele Martino; McMaster University - Sociology 

 11 

Chapter 2: Methodology 

Introduction 

 

This dissertation analyzes qualitative data collected from semi-structured in-depth 

interviews to better understand the romantic and sexual lives of adults with 

intellectual disabilities. Qualitative research “seeks to establish the meaning of a 

phenomenon from the views of participants” (Creswell, 2009, p. 16). 

Additionally, in-depth interviews are useful for making space for participants to 

contextually share their experiences and express their perspectives as they make 

sense of our social world (Boeije, 2010, Ramazanoğlu & Holland, 2002). This 

approach allowed me to make space for disabled people to share their 

perspectives and challenges as well as instances of subversions and triumphs 

concerning romance and intimacy on their own behalf. Through interviews, I 

explored the challenges and opportunities for people with intellectual disabilities 

to become and remain sexual, the sexual fields that they navigate or aspire to 

navigate, how participants make sense of their gendered identities and experiences 

as sexual actors, how they find and obtain a romantic or sexual partner of their 

choosing, and the strategies used to claim sexual spaces and increase their chances 

of partnering.  

 

As Bryman and Teevan (2005) appropriately articulate, “Methods are not 

simply neutral tools; they are linked with how social scientists envision the 

connection between different viewpoints about the nature of social reality and 

how it should be examined” (p. 2). This research is grounded on a critical-

constructionist framework which understands that there are different versions of 

‘truth’ and that they are always partial, locally situated, and fluid (Bloomberg & 

Volpe, 2012; Guba & Lincoln, 1994). A critical-constructionist framework also 

suggests that ‘reality’ is always “multiple”, “intangible”, “experientially based”, 

and “situated” (Guba & Lincoln, 1994, p. 110). In essence, participants shared 

their views and perspectives as they understood them at the time of the interview. 

Finally, a critical-constructionist framework understands that these ‘truths’ are 

embedded within unequal power relations. Thus, it is important to keep in mind 

how disabled people’s knowledge and views have historically been discredited 

and underrepresented. My research attempts to highlight some of those power 

relations and report on how disabled people negotiate them. My ontological and 

epistemological approaches guided my choice in terms of my research method. In 

keeping with a critical-constructionist framework, I used in-depth, semi-structured 

interviews to center the knowledge, voice, and experiences of people with 

intellectual disabilities.  

 

This chapter explains the importance of making space for people with 

intellectual disabilities to share their experiences and perspectives as meaning 

makers of their own lives. I also outline the research design, the logistical details 

of the study, ethics, participant eligibility and recruitment, the interview process, 



Ph.D. Thesis – A. Santinele Martino; McMaster University - Sociology 

 12 

and provide a profile of participants. In an effort to be reflexive, I also address my 

positionality as a researcher, including my “relationship to disability” (O’Toole, 

2014). Lastly, I describe my procedures to analyze the findings.  

 

Nothing About Us, Without Us  

 

In their efforts, the disability rights movement has long advocated for nothing 

about us, without us (Charlton, 1998). People with intellectual disabilities have 

highlighted the importance of speaking about their experiences (Fudge Schormans 

et al., 2011; McDonald et al., 2015) but are commonly seen as not being capable 

enough to participate in research (Lai, Elliott, & Ouellette-Kuntz, 2006). At one 

point, for example, I was asked by a member of an ethics review committee 

whether disabled people were “able to give [me] any good data at all”. Instead, 

this person suggested, I was “highly encouraged to speak with the parents or 

support workers” of disabled people instead. The gatekeeping around disabled 

people is so common that they have generally had fewer opportunities to speak 

about their experiences and perspectives, especially regarding their romantic and 

sexual lives (Santinele Martino & Fudge Schormans, 2018).  

 

It was extremely important for me to center the voices of people with 

intellectual disabilities, acknowledging them as agents and meaning makers of 

their own lives. I am inspired by feminist methodology, which aims to center the 

experiences and voices of those at the margins (Pole & Lampard, 2002). As 

Foucault (2003) explains, subjugated knowledge refers to a “whole series of 

knowledges that have been disqualified as non-conceptual knowledges, as 

insufficiently elaborated knowledges: naïve knowledges, hierarchically inferior 

knowledges, knowledges that are below the required level of erudition or 

scientificity” (p. 7). In this way, my research makes space for people with 

intellectual disabilities – and their often-subjugated knowledge – allowing them to 

share their experiences with love and intimacy, challenging the invisibility of their 

voices and sexualities by contributing to a growing body of literature that is 

finally listening to people with intellectual disabilities (Rushbrooke, Murray, & 

Townsend, 2014).  

 

When listening to people with intellectual disabilities, their protection was 

extremely important to me, especially considering precedents of unethical 

research with this social group (Iacono, 2006; Mcdonald, Kidney, & Patka, 2012). 

People with intellectual disabilities have a long and painful history of abuse and 

exploitation, sometimes done by researchers (Fudge Schormans & Sobsey, 2007). 

Yet, at times, research involving disabled people is seen as simply “too risky” and 

not “valuable enough to outweigh potential risks” to the extent that researchers – 

especially junior scholars – are actively discouraged from engaging with this 

social group (Santinele Martino & Fudge Schormans, 2018, para 3). This is highly 

problematic as articulated by Santinele Martino and Fudge Schormans: 



Ph.D. Thesis – A. Santinele Martino; McMaster University - Sociology 

 13 

 

It is [also] unethical to assume that people labeled with intellectual 

disabilities cannot make their own decisions and, though greater 

care may be needed, people with intellectual disabilities have the 

right to share their perspectives and "speak" on their own behalf – 

in their daily lives as well as through their active inclusion in 

research (para. 1). 

 

This project was an opportunity for people with intellectual disabilities to 

participate in knowledge construction (McDonald, Conroy, Olick, & The Project 

Ethics Expert Panel, 2016) and help change general community opinions about 

their sexual rights (Fudge Schormans, 2015). I am a firm believer in the power of 

sexual stories (Plummer, 1995) and understand that telling stories is an important 

part of creating new and more diverse sexual cultures (Santinele Martino & Fudge 

Schormans, forthcoming; Siebers, 2008). By sharing participants’ sexual stories, I 

hope to advance “disabled people’s political struggles” and help “to eradicate 

disabling barriers in society” (Barnes, 2008, p. 7).  

 

My Relationship to Disability 

 

Reflexivity should be an ongoing process that walks with us in every stage of 

research. As Guillemin and Gillam (2004) note, a reflexive researcher does not 

only report the “facts” but “actively constructs interpretations (what do I know?), 

while at the same time questions how those interpretations came about (how do I 

know what I know?)” (p. 274). This helps develop rigorous research through 

thoughtful ethical practices. I agree with Liddiard (2013) that reflexivity is a 

“practice that is central to disability and feminist research” (p. 2). Inspired by 

O’Toole’s (2013, 2015) call for more open discussions regarding researchers’ 

relationship to disability, I would like to share my own relationship with 

disability. My interest in disability studies was inspired by my experience 

growing up with an older sibling with a physical impairment. His experiences and 

challenges around sexuality encouraged me to immerse myself in this body of 

literature to find ways to better support disabled people and their families in this 

aspect of life. 

 

My passion for this research area was emboldened by my volunteer work 

with disabled people, self-advocacy groups, and community-based organizations. 

I have also worked alongside incredible critical disability studies scholars as a 

research assistant and collaborator in a variety of research projects. I count myself 

lucky to be a part of a supportive network of scholars and activists in Canada and 

abroad who have challenged, reinforced, and contributed to my understanding of 

disability as well as my own positionality. I feel a strong sense of commitment to 

using my privileges to make space for people with intellectual disabilities to share 

their experiences. At the same time, I understand that reflexive practices are even 



Ph.D. Thesis – A. Santinele Martino; McMaster University - Sociology 

 14 

more important for non-disabled researchers considering how “the inherent power 

relationship between researcher and researched is accentuated by the unequal 

power relations which exist between disabled people and non-disabled people in 

the wider world” (Stone & Priestley, 1996, p. 700). 

 

Inspired by Patricia Hill Collins’ (2000) work, I have been committed to 

making this dissertation “intellectually rigorous, well researched, and accessible 

to more than the select few fortunate enough to receive elite education” (p. viii). I 

am committed to sharing my research findings with people with intellectual 

disabilities – both within and outside of academia – and ensuring that this is done 

in an accessible manner (Dalton & McVilly, 2004; Lewis & Porter, 2004; 

Liddiard, 2013). I included a section in the consent form where participants could 

list their interest in receiving a brief research report in plain language and large 

print at the completion of the research. I have also offered to deliver short 

presentations about the study results to self-advocacy groups and community-

based organizations. Finally, I have also committed to making the final 

dissertation available at the McMaster University Library and to send participants 

copies of future publications along with brief summaries in plain language. 

 

Research Design  

 

Most studies drawing on the sexual fields framework have used an ethnographic 

approach, focusing on particular sexual fields (e.g., Farrer, 2010, 2011; Farrer & 

Dale, 2014; Green, 2008b; Weingberg & Williams, 2013). No previous studies 

have used a sexual fields approach to examine the intimate lives of people with 

intellectual disabilities and the more specific sexual fields they navigate. My 

project contributes to the sociologies of disability and sexualities by applying and 

extending the sexual fields framework to the study of the romantic and sexual 

experiences of people with intellectual disabilities. It offers a new theoretical 

vocabulary as well as a multi-level analytical approach to understanding the 

experiences of this social group which has been commonly desexualized and 

restricted from forms of sexual expression.  

 

For different reasons, I spoke with disabled people instead of other social 

actors such as family members and support workers for this project. Firstly, this is 

because more attention has been paid to the views and experiences of other people 

in disabled people’s lives when it comes to sexuality (Santinele Martino & Fudge 

Schormans, 2018). Secondly, research sometimes “dilute[s] disabled people’s 

voices by including their voices only alongside those of non-disabled people” 

(Liddiard, 2011, p. 82, emphasis added). People with intellectual disabilities can 

provide rich, insightful snapshots as they make sense of and navigate their 

everyday lives. Furthermore, this project focused on the experiences of people 

with intellectual disabilities because they have usually had a different response to 

their sexual expression and sexual rights compared to people with other disability 



Ph.D. Thesis – A. Santinele Martino; McMaster University - Sociology 

 15 

labels (Gill, 2010; Shildrick, 2015). As Gill (2010) writes, “[M]ost, in the 

disability communities would argue that disabled adults should have unrestricted 

access to sexuality”, however, when it comes to individuals with intellectual 

disabilities, they are “seen as special exceptions, deserving a different approach, 

primarily because of their impairment diagnosis” (p. 210). Additionally, due to 

misguided ideas around capacity and ability, this social group has “historically 

been afforded few opportunities to communicate their experiences and desires 

concerning their personal and intimate lives, including their friendships, 

parenting, family relationships, or romantic and sexual experiences” (Santinele 

Martino & Fudge Schormans, 2018, para. 2). In taking this particular focus, my 

intention has not been to reinforce a hierarchy of impairments (Deal, 2003) but 

rather to attend to specific experiences and needs of a social group which is not 

often heard.  

 

I recruited adults because gaining access to disabled children and underage 

youth can be significantly difficult due to gatekeeping, infantilization, and 

protectionism, especially when it comes to talking about sexuality. These are, of 

course, important voices that also deserve further attention especially as children 

and youth experience a critical time in terms of learning about sexuality and 

developing relationships. At the same time, it is also important to contest a 

tendency within the disability scholarship to focus on young disabled people 

(Chivers, 2011; Priestley & Rabiee, 2002) as well as an assumption in the existing 

sexual fields literature that assumes that chronological adulthood automatically 

grants sexual actors autonomy to make choices in their intimate lives and access 

to an array of sexual fields and sexual practices. As my findings highlight, merely 

being an “adult” (chronologically speaking) may not lead to the “permission” or 

to opportunities for people with intellectual disabilities to navigate sexual fields.  

 

This project used purposive sampling to select participants who met 

certain criteria (more details in the recruitment guideline section) for inclusion 

and who had the knowledge and experience necessary to address this project’s 

research questions (Aurini, Heath, & Howells, 2016; Cresswell & Plano Clark, 

2011; Patton, 1990). I strived to recruit people with intellectual disabilities living 

in different housing arrangements including group homes and assisted living 

facilities, with family members, and independently. The reason for recruiting 

participants in different housing arrangements – especially those in more 

protective and constrained living environments – was to capture important 

nuances regarding different forms of boundary-work (Lamont & Molnár, 2002) 

disabled people experience, sexual agency in the lives of disabled people, and 

ways that their sexual access is shaped. To achieve that, I drew on my existing 

connections with community-based organizations and self-advocacy groups.  

 

Gaining access to disabled people who are more isolated or sheltered is 

challenging. However, I have built trusting relationships with self-advocates and 



Ph.D. Thesis – A. Santinele Martino; McMaster University - Sociology 

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service providers which allowed me to rely on them to reach out to a more diverse 

group of disabled people. These connections shared information about the study 

with potential participants who had a choice whether to contact me and participate 

in the study. A challenge with snowball sampling is that participants may then 

know one another, creating certain risks in terms of anonymity and 

confidentiality. To handle that concern, I never disclosed to my connections 

whether people decided to participate in the study. I also informed participants 

about risks in participating and that I would not tell others about their research 

participation. Of course, participants themselves may have chosen to disclose 

their participation to others in their lives, which was outside of my control. When 

asked about their current living arrangement, the majority of the 46 participants 

lived in group homes or assisted living facilities (n=20), while some lived with 

their intimate partners (n=5), family members (n=12) including parents, siblings, 

and uncles, and a few live independently (n=9). As can be seen, most participants 

live either with their families or other people with intellectual disabilities (80 

percent), placing most participants in living arrangements where they may have 

less access to privacy and opportunity to initiate and maintain romantic and sexual 

relationships.  

 

This research primarily draws on in-depth interviews with adults with 

intellectual disabilities.1 In-depth semi-structured interviews allowed for a 

detailed exploration of the intimate lives of participants “in their own words and 

[...] on their own conditions [as] they may express views, give words to their 

experiences, and describe events and situations” (Boeije, 2010, p. 32; Kvale, 

2006). They also grant researchers access to non-observable aspects of people’s 

lives including their emotions, views, and sexual stories (Brinkmann, 2013; 

Neuman, 2011). Most importantly, interviews allowed me to elicit narratives, or 

sexual stories, directly from participants – a format that tends to be the most 

successful for this social group. The interview guide consisted of questions about 

their intimate lives including how they had learned about sexuality, the spaces 

they navigated to meet intimate partners, the barriers and opportunities to having a 

romantic and sexual life, and their strategies for remaining sexual. It contained 

different types of questions, including open-ended, exploratory, and probing 

(Kvale, 1996). In wanting to apply a sexual fields framework to this particular 

social group, the interview guide was also organized in a way that allowed me to 

theorize concepts such as erotic habitus, sexual capital, and sexual fields in the 

context of participants’ lived experiences. As Kvale (1996) notes, interviews are 

not a “reciprocal interaction of two equal partners” as interviewers usually 

“defin[e] the situation, introduc[e] the topics of the conversation, and through 

 
1 For the purpose of this study, instead of relying on medical and diagnostic procedures, I included 

community members who self-identified as having an intellectual disability. Considering the level 

of stigma unfortunately associated with this disability label, it is highly unlikely that a non-

disabled person would opt to associate with the label. Additionally, prior to the interviews, I 

ensured that participants understood the purpose of the study and the criteria for participation.  



Ph.D. Thesis – A. Santinele Martino; McMaster University - Sociology 

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further questions stee[r] the course of the interview” (p. 126). For that reason, 

participants also had the opportunity to raise other relevant questions and topics 

that were not previously included in the interview guide. A semi-structured 

interview approach allowed participants to also shape the interview and allowed 

me to ask additional questions regarding anticipated topics they raised (Neuman, 

2011; Rubin & Rubin, 2005). As a form of reciprocity, I also always asked 

participants if they had questions about the project or myself to the extent to 

which I felt comfortable.     

 

The benefit of interviews is that they allow us to understand the 

experiences of people who do not actively participate (either by choice or lack 

thereof) in sexual fields. Indeed, as my findings demonstrate, many people with 

intellectual disabilities face countless barriers to accessing a rich array of sexual 

sites. My work importantly highlights the centrality of considering the question of 

access to sexual fields – whether people can access or claim sexual spaces and 

how they enter these spaces in particular, gendered ways – before focusing on 

certain sexual fields. Thinking about sexual access in this context highlights the 

experiences of a group of sexual actors who are often out of “the game” (Green, 

2014), either by choice or due to restrictions from others in their lives. 

Additionally, due to more pragmatic reasons, including the challenge of gaining 

access to social spaces created by and for people with intellectual disabilities as a 

junior scholar with limited time and funding, interviews were then the best fit for 

this project. That said, my interview data is complemented by some participant 

observation conducted in community-based organizations, self-advocacy group 

meetings, day programs, and group homes which allowed me to gain a more 

contextualized understanding of the spaces where some people with intellectual 

disabilities spend a significant amount of their time.  

 

The data presented in this dissertation derives from 46 in-depth, semi-

structured interviews with adults with intellectual disabilities, generating 990 

pages of interview transcripts. It has been noted that “there are no rules” in terms 

of sample size in qualitative research (Patton, 2002, p. 244). Instead, it is about 

having “enough data to tell a rich story” (Braun & Clarke, 2013, p. 56). Having 

conducted 46 in-depth interviews – a significant number in my area of research – 

gave me ample data to write a rich and complex story. Additionally, noticing 

reoccurring codes and themes coming through my interviews, I felt comfortable 

concluding the interview process (Hagaman & Wutich, 2017). These interviews 

took place between June 2017 and December 2018. In addition, I kept field notes 

throughout the research process based on my observations and reflections during 

fieldwork.  

 

Recruitment 

 



Ph.D. Thesis – A. Santinele Martino; McMaster University - Sociology 

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The difficulties and complexities involved in recruiting people with intellectual 

disabilities have been well documented (e.g., Becker et al., 2004; Iacono, 2003; 

Nicholson, Colyer, & Cooper, 2013). People with intellectual disabilities are 

commonly assumed to be unable to make their own decisions, including whether 

to participate in research and “speak” on their own behalf (Nind, 2008; Santinele 

Martino & Fudge Schormans, 2018). As a result, people with intellectual 

disabilities have often been excluded from research, provided with fewer 

opportunities to share their experiences compared to other social actors in their 

lives (Elderton et al., 2013; Kelly et al., 2009; Lewis & Porter, 2004). Gaining 

access to people with intellectual disabilities can often involve going through a 

series of gatekeepers, including family members and service providers, as well as 

discussing the importance and benefits of the research (Lennox et al., 2005; Nind, 

2008). Depending on guardianship arrangements, family members or other legal 

guardians may also need to provide consent along with the participant’s 

agreement (Lennox et al., 2005). In this study, all participants were their own 

legal guardian. 

  

This project used a “complex and multi-layered” recruitment strategy 

(Nicholson, Colyer, & Cooper, 2013, p. 654) to garner participants from four 

cities: Hamilton, Toronto, Ottawa, and Kingston, Ontario. Participants were 

recruited through 1) service providers and self-advocacy groups; 2) presentations 

about the project at self-advocacy group meetings; 3) a local radio show; 4) 

posted recruitment posters (appendix D) in public places (e.g., grocery stores, 

libraries, community agency offices, self-advocacy group offices, parent-led 

groups); 5) posters shared via social media (e.g., Facebook and Twitter); 6) a 

website with detailed information about the study, and 7) snowball sampling 

(appendix A, B, C), an approach that allows for accessing “hidden” and “socially 

stigmatized” social groups (Atkinson & Flint, 2001, para. 2). To facilitate the 

recruitment process, especially of adults with intellectual disabilities living in 

more controlled living arrangements, I also asked agency workers and self-

advocates to pass on recruitment “postcards” (appendix E) to potential 

participants. Self-advocates and agency workers are particularly well-positioned 

in knowing and having some access to people living in more controlled settings.  

 

In terms of recruitment, I also took into account some of the 

recommendations that people with intellectual disabilities themselves have 

presented to researchers in previous studies (e.g., McDonald, Kidney, & Patka, 

2012; Swaine et al., 2011). For instance, all of my recruitment materials were 

written in an easy-to-read manner (Swaine et al., 2011) and further improved 

through the paid services of a professional trained in translating documents into 

plain language. Additionally, I reviewed the recruitment documents with two 

community members with intellectual disabilities who I had collaborated with in a 

previous project to further ensure accessibility and clarity.  

 



Ph.D. Thesis – A. Santinele Martino; McMaster University - Sociology 

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At the beginning of this project, I was unable to provide an honorarium to 

participants. Fortunately, that changed when I secured research funds and 

followed the advice from self-advocates who noted that a lack of an honorarium 

would discourage and make the study less accessible for some people to 

participate. This is unsurprising considering how disabled people in Canada are 

more likely to be living on a low income and under the poverty line compared to 

non-disabled people (Council of Canadians with Disabilities, 2017; Ignagni et al., 

2016). I ensured to contact participants who had already been interviewed without 

compensation to verify that they too received compensation for their study 

participation. 

 

Considering how people with intellectual disabilities are sometimes 

coerced in their everyday lives into partaking in activities that may not be of their 

choosing (Cameron & Murphy, 2006; Nicholson, Colyer, & Cooper, 2013), it was 

important for me to ensure that potential participants did not feel that way in this 

research. Throughout the entire project, the decisions from disabled people were 

respected and prioritized. For instance, I had one mother who, though well-

intentioned, contacted me saying that she wanted her son to participate in the 

study. She considered the study to be an opportunity for her son to talk about 

sexuality with a more “knowledgeable person”. Without hesitation, she then told 

me that she would “really encourage” her son to participate. While I appreciated 

her gesture, I respectfully reminded her that it was her son’s decision whether to 

partake. Her son then opted not to participate and his wish was respected. I 

followed a similar approach when recruiting through service providers and self-

advocacy groups. I wanted to ensure people did not feel pressured to participate 

because a friend or staff member had encouraged them to do so. I reminded 

participants that it was their choice whether or not to participate in the study. 

 

Recruitment Guidelines 

 

To be eligible, participants had to be at least 18 years old, self-identify as having 

an intellectual disability, have a clear understanding of their legal guardianship 

status, live in Ontario, and have an interest in sharing their romantic and sexual 

experiences for the purposes of the research. Although I did not ask participants 

about their specific disability label to further protect their identities and their 

privacy, my primary recruitment strategy – through self-advocacy groups and 

service providers – ensured that people had received a diagnosis of an intellectual 

disability. It is likely that this project included participants identified with a range 

of intellectual disability labels, but I am unable to specifically note them. 

Participants communicated verbally in an interview, understood what the research 

was about, and gave written informed consent.  

 

It was also my goal to address intersectionality. Thus, I sought to recruit a 

diverse group of participants. Disability studies scholars have emphasized the 



Ph.D. Thesis – A. Santinele Martino; McMaster University - Sociology 

 20 

importance of taking an intersectional lens when examining the experiences of 

disabled people with sexuality and intimacy (Björnsdótti & Rannveig 

Traustadóttir, 2009; Greenwell & Hough, 2008; Rembis, 2010; O’Toole, 2000, 

2015). To achieve this, I used different strategies including sharing information 

about the study with community-based organizations and social network groups 

led by other equity-seeking groups while educating myself on different (but still 

intersecting) social struggles and positive and respectful forms of engagement. 

My previous research experiences have similarly pointed to the significance of 

various social categories including gender, sexualities, and religion in shaping 

participants’ intimate lives (Santinele Martino, 2014, 2019). Interestingly, one of 

the questions I received from the ethics board was about the need to ask 

participants about their demographic information. While I understand that 

researchers should make thoughtful decisions about the types of demographic data 

they collect, it seemed as though there was an assumption that disability status 

was the only social location relevant to this social group.  

 

As my findings strongly demonstrate, it is crucial to take an intersectional 

lens to understand the intimate lives of disabled people. For example, the religious 

background of some participants played a significant role in the sexual fields and 

intimate partners they privileged (Santinele Martino, under review). After 

explaining the relevance of collecting demographic information from participants 

to the ethics board, and making plain to participants that they should share only as 

much as they felt comfortable doing, I asked participants questions about their 

social locations using a demographic sheet (appendix M).  

 

For this study, I was unable to include sign language users, people using 

alternative and augmentative communication devices, non-English speakers, 

individuals who were unclear about their legal guardianship status, and 

individuals who were not their own legal guardian and whose legal guardian did 

not authorize their participation. In the case of participants in this study, they were 

all their own legal guardian. It is important to note how sometimes, due to 

protectionism and gatekeeping, researchers end up with “the usual suspects”, 

meaning disabled people “who use traditional forms of communication (i.e., 

speech), who have been determined to have ‘milder’ disabilities, who may already 

have research experience or identify as self-advocates” (Santinele Martino & 

Fudge Schormans, 2018, para. 28). People with intellectual disabilities form a 

heterogenous group and further research is needed to better understand the array 

of experiences within this social group. Nevertheless, it is important to note that 

even the participants in this sample still pointed to significant levels of 

surveillance, restriction, and isolation in their intimate lives. Those who I was 

unable to include, and others who are more isolated and have less sexual agency 

in their lives may experience even more intensified restrictions to their intimate 

citizenship.  

 



Ph.D. Thesis – A. Santinele Martino; McMaster University - Sociology 

 21 

Ethical Considerations 

 

Protection and Rights: Not Mutually Exclusive 

 

The process for receiving ethics approval for this project was lengthy, requiring 

telephone calls, extensive written responses to the ethics board, one-on-one 

meetings with ethics officers, and a meeting with the full ethics board. This 

project received ethics approval through three different research ethics boards 

including the McMaster University Research Ethics Board, the Mohawk College 

Research Ethics Board, and Family Service Toronto Research Ethics Board. The 

process of receiving ethics approval can be particularly challenging in research 

involving people with intellectual disabilities, especially for studies related to 

sexuality (Iacono, 2006; Santinele Martino & Fudge Schormans, 2018). These 

challenges can sometimes discourage researchers, especially students who 

experience time and funding constraints from engaging people with intellectual 

disabilities (McDonald et al., 2015; Santinele Martino & Fudge Schormans, 

2018). In fact, I was highly discouraged by one ethics board from interviewing 

people with intellectual disabilities who supposedly may not have “given me any 

good data”. Instead, I was encouraged to pursue interviews with family members 

and support workers. A significant contribution of this project, however, is 

precisely that it makes space for people with intellectual disabilities to speak on 

their own behalf.  

 

Having researched the intersection of intellectual disability and sexuality 

for almost 10 years now, I am well aware of how this area commonly warrants 

concern from all sides. Some of these concerns are of course well-founded. Yet, 

there are better ways of dealing with this vulnerability than simply shutting down 

opportunities for disabled people to share their hopes, perspectives, and 

experiences around sexuality. Protection should not be used as a silencing tool, 

one that precludes disabled people from their human right to sexual expression. 

For some participants, involvement in this research provided a first-time 

opportunity to speak openly about their romantic and sexual desires and dreams. 

Many had previously been discouraged, punished, infantilized, and reprimanded 

when talking about sexuality. This only made my responsibility – especially in 

terms of not being judgemental – even greater. It was extremely important for me 

to create a safe(r) space for participants to comfortably share their thoughts. In our 

conversations, nothing was “abnormal”, “odd” or “taboo”. Furthermore, as a 

social group which is so commonly infantilized, it was important for me to treat 

the participants like adults who can understand their rights and choices regarding 

research participation. It was my job to ensure information was delivered to 

participants in an accessible manner, such as using consent forms written in an 

easy-read format.   

 



Ph.D. Thesis – A. Santinele Martino; McMaster University - Sociology 

 22 

Previous studies have consistently noted that participating in research can 

be a positive experience for people with intellectual disabilities who appreciate 

having an opportunity to have their voices heard, especially in hopes that their 

narratives can help make a difference in the lives of other people with intellectual 

disabilities (Fudge Schormans, 2015; McDonald, Kidney, & Patka, 2013; 

Nicholson, Colyer, & Cooper, 2013). Also, for some disabled people, 

participating in studies like mine can be a first-time opportunity to more freely 

talk with someone about love, sexual desires, and sexual pleasure (Liddiard, 

2013). 

 

Ethics Procedures 

 

At the time of the interview, the consent form (appendix F) was provided to 

participants to read. I also read the consent forms with participants to ensure that 

the form was understood. Participants were told at this time that they were not 

obliged to continue if they felt any uncertainty. Participants were provided a copy 

for their records. I had the information letters and consent forms available in 

larger fonts (14-point font size) and ensured that the language in the form could 

be understood by participants. Participants also had a choice to receive the 

interview questions in advance. In those cases, I sent the participants a second 

version of the interview guide written in plain language, with questions numbered, 

without jargon headings, and in larger font (appendix O).  

 

When potential participants responded to the call to participate, I had an 

introductory conversation with them, an opportunity to talk in-depth about the 

purpose and nature of the research. I reviewed the research information with 

interviewees once again at the time of their interviews. This is because previous 

studies suggest that it can be beneficial to repeat the research information to 

participants to ensure they understand the research and consent process (Sigstad, 

2014; Wennberg & Kjellberg, 2010). I ensured that participants understood what 

the research was about by asking them “tell-back questions” such as, “Can you 

tell me what this study is about, in your own words?” and “Can you stop the 

interview whenever you want?”  

 

I also asked participants whether they could sign a consent form and if 

they were in a guardianship arrangement. All of the participants were their own 

legal guardian. If people preferred to have a support person, advocate, or 

interpreter present during the interview, I accommodated these requests and had 

these individuals sign confidentiality forms (appendix L). A few participants 

chose to have a support worker with them during the interview, and their desire 

was respected. Participants were assured that identifying information would not 

be made available to any member of their community or to their peers. An 

exception to this would occur if/when participants revealed information about 



Ph.D. Thesis – A. Santinele Martino; McMaster University - Sociology 

 23 

illegal activities, such as physical or sexual abuse, which was also explained as 

part of obtaining informed consent. 

 

“Ethically Important Moments” 

 

Ethics should certainly go beyond just the mere requirements and approval of the 

Institutional Review Boards (Blee & Currier, 2011; Ellis, 2009; Librett & 

Perrone, 2010). Even if researchers follow these procedural guidelines “relational 

situations will come up in the field and in the interviews that will make their 

heads spin and their hearts ache” (Ellis, 2009, p. 310). Still, neither the ethics 

committees nor ourselves can foresee all of the day-to-day ethical issues we will 

face (Blackman, 2007; Guillemin & Gillam, 2004). This is where the concept of 

“relational ethics” becomes particularly relevant to research as it requires us “to 

act from our hearts and minds, to acknowledge our interpersonal bonds to others, 

and to initiate and maintain conversations” (Ellis, 2009, p. 308). Guillemin and 

Gillam’s (2004) discussion on “ethics in practice” and “ethically important 

moments” is particularly relevant (p. 264-265). During my fieldwork, I 

encountered ethically important moments and I strived to address them to the best 

of my ability.  

 

There were instances in which participants had been misinformed about 

sexuality and their sexual rights. I cannot say whether that was done intentionally. 

For instance, one participant asked me if it was true that people in Ontario are not 

allowed to get married until they are in their 40s. In these moments, I felt 

responsible for answering those questions as honestly and accurately as I could. It 

would be unethical for me to knowingly perpetuate misinformation, especially 

when participants actively sought out answers from me, a person who some saw 

in some way as an “expert”. My main concern, however, was about how that 

could potentially cause some tension between participants and other people in 

their lives. For that reason, I followed up with participants after the interview via 

brief emails and phone calls just checking on how they were feeling after the 

interview. All participants reported positive feelings about having had an 

opportunity to share their perspectives and experiences and, to my knowledge, 

none of them experienced any conflicts following the interview.  

 

A few participants wanted to remain in touch after the interview. Again, 

considering the social isolation so commonly experienced by disabled people, 

their desire for connection should not be surprising. There were also a few 

instances in which participants showed certain romantic or sexual interest toward 

me. For example, in one instance, when asked about their ideal partner, a 

participant not-so-subtlety looked at me from head to toe and clearly started 

describing me. At other times, I received compliments about my appearance or 

was asked questions about my relationship status. I approached these moments 

with kindness and respect toward participants while maintaining clear 



Ph.D. Thesis – A. Santinele Martino; McMaster University - Sociology 

 24 

professional boundaries. I did not want to cause harm, especially to those whom 

had just spoken about feeling extremely lonely and having low self-confidence. I 

also am well aware that other sexualities scholars in disability studies have 

experienced similar instances (see, for example, Liddiard, 2011) and this was not 

my first time engaging in this type of research. In a previous study, a couple with 

intellectual disabilities invited me to join them in a threesome. In some of these 

instances, a subtle nod to my relationship status was enough to help me assert 

some boundaries. Certainly, being a man shapes the way these interactions 

unfolded. For women doing similar research, attempts to assert those boundaries 

may be challenged by participants (Liddiard, 2011).  

 

Finally, it was particularly difficult for me to listen to participants’ 

experiences with abuse and harassment. It undoubtedly triggered difficult 

memories for me. I count myself lucky though that I have an incredibly 

supportive network of friends and colleagues who I could count on for debriefing. 

I have been lucky to have people around me to whom I could open up and cry. 

For some participants, however, they had only recently been able to recount their 

experiences with a specialist and to work through those painful memories. I made 

to sure to follow up with these participants via phone calls. I feel extremely 

privileged that participants felt comfortable sharing those experiences with me.    

 

Interviews  

 

Once I obtained ethics approval, I started conducting my interviews. I used a 

semi-structured interview guide to elicit responses from participants while also 

allowing them to bring up information that they found relevant. There is a body of 

literature addressing best practices for interviewing participants with an 

intellectual disability (Beail & Williams, 2014). As previous studies have shown 

some evidence of acquiescence bias amongst people with intellectual disabilities 

when responding to more directive questions (McVilly et al., 2008), I focused on 

eliciting narratives as much as possible (Beail & Williams, 2014; Booth & Booth, 

1996; McVilly et al., 2008). People with intellectual disabilities may also have a 

more limited vocabulary and experience some challenges articulating and 

describing their experiences in detail (Booth & Booth, 1996; Beail & Williams, 

2015; Clarke et al., 2005), which does not mean that they cannot share their 

experiences and perspectives in rich ways. It was also important to remember that 

people with intellectual disabilities are a heterogeneous group and that different 

interview approaches may be more suited to different participants (Goodley, 

1998). 

 

It was important for me to respect participants’ individual preferences. 

Considering the sensitivity of the research topic, the interviews were conducted in 

a mutually agreeable location that allowed participants to feel comfortable and 

safe sharing their experiences. This included places such as public libraries, a 



Ph.D. Thesis – A. Santinele Martino; McMaster University - Sociology 

 25 

campus office, local agencies, community centers, and participants’ residences. In 

the case of participants who chose to be interviewed at their homes, I maintained a 

“buddy system”, notifying a trustworthy colleague who had certain details of the 

interview (e.g., name of participant, date, time, expected duration, location), but 

would only access them if there was a problem. This is a common practice in 

qualitative research as a way to protect researchers’ safety in projects involving 

interviews at participants’ own homes. I did not feel unsafe in any of my 

interviews. I made sure to notify this colleague with a brief telephone call that I 

had safely completed the interview. I am extremely appreciative of participants 

who invited me into their homes and generously shared personal items with me 

such as family photos and letters that further illustrated the depth and meaning of 

sexuality, love, and intimacy in their lives.  

 

It was also important for me to establish rapport with the participants prior 

to the interview in order for them to feel comfortable sharing information about 

their personal lives. As Charmaz (2006) notes, “Strong bonds build trust and 

foster open conversations with research participants about areas ordinarily left 

unspoken” (p. 112-113). By having a two-step process in which I first talked to 

potential participants and offered them time to think about their participation, I 

started building that rapport, clarifying their questions, and allowing them to 

know me a little bit before we met again for the interview. Furthermore, because 

some participants had heard about the research through community organizations 

and self-advocacy groups, that allowed for them to feel safer and more willing to 

share their experiences. I was particularly touched by one participant who 

returned a few minutes after her interview had concluded with a letter in hand. 

The handwritten letter thanked me for being “gentle” and “kind” during the 

interview. I am extremely grateful for those moments during my fieldwork.   

 

Interviews ranged from one to two hours each and were audio recorded 

with the permission of the participants. Each participant received a $20 gift card 

in appreciation of his or her time. This amount was suggested by my committee 

member Dr. Ann Fudge Schormans who has done extensive research with people 

with intellectual disabilities in Ontario. By providing participants with gift cards, 

it provides greater flexibility for where they can spend their compensation and 

avoids potential impacts on disability funding.  

 

I explained the research and went through the consent form with 

participants in accessible language. Once an individual agreed to meet for an 

interview, they were informed at the time of reviewing the consent form that their 

participation was voluntary. I told participants that they were not required to 

answer any questions with which they were uncomfortable and that they could 

withdraw their consent at any time. I told participants that, following the 

interview, and any time before the conclusion of the project, they could withdraw 

from the research without penalty. I provided my name, address, and email 



Ph.D. Thesis – A. Santinele Martino; McMaster University - Sociology 

 26 

address on the consent form, a copy of which remained with participants, with a 

statement inviting participants to contact me at any time with questions or 

concerns, including withdrawal. No one has withdrawn from their interview or the 

study. I also completed a short questionnaire asking participants for some basic 

demographic information. 

 

Profile of Participants 

 

The combination of a larger sample size as well as a wide eligibility criterion 

allowed me to access a diverse sample (see Table 1) including both men and 

women across different ages. Participants ranged from 23 to 64 years old, with an 

average age of 41. There were more men (n=33) than women (n=13). This may be 

a result of a larger culture in which men, both disabled and non-disabled, still 

have more “permission” to talk openly about sexuality. When it comes to women 

with intellectual disabilities, who are often desexualized and constructed as 

particularly vulnerable, there may be additional barriers for their participation in 

research. Additionally, having a man conduct this research may have discouraged 

some women, as well as gatekeepers in their lives, from feeling comfortable with 

participating.  

 

When asked about their relationship status, more than half of my sample 

was single (n=25), compared with those in a relationship (n=14), married (n=4), 

and divorced (n=3). My sample unfortunately lacks some diversity in terms of 

sexual orientation. Among the participants, most people identified as heterosexual 

(n=42) compared to heterosexual with prior homosexual experience (n=1), 

bisexual (n=1), queer (n=1), and being unsure (n=1). This is, of course, 

disappointing considering how I have been invested in making space for 

LGBTQ+ disabled people to share their experiences (Santinele Martino, 2017, 

2020). Evidence from other studies suggest that LGBTQ+ disabled people tend to 

experience a “double marginalization”, facing particular challenges due to 

marginalization both in the disability and queer communities (Santinele Martino, 

2017), which may mean that they lack access to a variety of sexual fields.   

 

Most of the participants self-identified as cis-gender people (n=44). The 

sample included one transgender man and one transgender woman. Consistent 

with other studies, these two participants highlighted how ableism, transphobia, 

transmisogyny, and other systems of inequality work together to create unequal 

and extremely violent outcomes in their lives. To date, very few studies have 

focused on the experiences of trans-identified disabled people. Thus, more 

attention is needed (Santinele Martino, 2017). This is especially important to 

avoid erasing trans-identified disabled people and reaffirming compulsory 

heterosexuality, in addition to opening opportunities for a more diverse array of 

sexualities and gender identities in disability studies and beyond (Slater & 

Liddiard, 2018).  



Ph.D. Thesis – A. Santinele Martino; McMaster University - Sociology 

 27 

 

The sample was also mostly White (n=32) compared to other racial 

groups: Black (n=4), Asian (n=4), Latino (n=3), and mixed (n=3). This is also 

disappointing because I am well aware of the risks of perpetuating what has been 

called a “White disability studies” (Bell, 2006; Miles, Nishida, & Forber-Pratt, 

2017). Interestingly, participants rarely spoke about their experiences through the 

lens of race and ethnicity. In fact, some were a bit unsure about how to identify 

themselves in terms of race and ethnicity. Nonetheless, considering the existing 

sexualities literature, which provided empirical evidence that shows that 

racialized social groups are often the target of control of their sexualities (e.g., 

Hill Collins, 2005; Fields, 2005), as well as disability studies literature showing 

how disability and race have been entangled throughout history as a way to justify 

forms of inequality (Bayton, 2001, 2005; Dolmage, 2018), future studies should 

examine the intersections of intellectual disability, sexuality, and race.   

 

Finally, in terms of schooling, most participants had had some school 

experience ranging from elementary school up until grade 12 (n=35), while a few 

reported having had some experience in college or university (n=11), mostly by 

taking a specific course. When it came to employment, participants reported being 

unemployed (n=18), working on a part-time basis (n=18), working on a full-time 

basis (n=9), and being retired (n=1). It is important to highlight how 78 percent of 

participants were, in essence, living in a precarious position due to unemployment 

or underemployment. This precarity affects the ability of disabled people to 

accumulate economic capital and maintain intimate lives.  

 

  



Ph.D. Thesis – A. Santinele Martino; McMaster University - Sociology 

 28 

Table 1: Demographic Profile of Participants 

 

Pseudonym Age Gender 
Sexual 

Orientation 

Relationship 

Status 
Race Religion Education Employment 

Housing 

Arrangement 

Amanda 44 Woman Heterosexual Married White Catholic Grade 12 Unemployed Living with Partner 

Bruce 61 Man Heterosexual Married White Catholic Grade 12 Part-Time Living with Partner 

Raul 52 Man 

Mostly 

Heterosexual 

Common 

Law White None Some college Unemployed Living with Partner 

Iago 39 Man Heterosexual Single White None Grade 12 Part-Time Living with Family 

Jenny 40 Woman Heterosexual 

In a 

Relationship White None Grade 12 Unpaid Work Living with Family 

Mary 24 Woman Heterosexual Single White Christian College Part-Time Group Home 

Aaron 42 Man Heterosexual Separated White Christian College Unemployed Group Home 

Joshua 50 Man Unsure Single White None Some college Temp Jobs Group Home 

Daniel 34 Man Heterosexual Single White Catholic Grade 12 Part-Time Independently 

Nathan 61 Man Heterosexual Divorced White 

Agnostic / 

Atheist Diploma Unemployed Independently 

Wendy 28 Woman Queer 

In a 

Relationship Mixed None Some college Unemployed Living with Partner 

Ethan 41 Man Heterosexual Single White None Grade 4 Unemployed Group Home 

Gerald 49 Man Heterosexual 

In a 

Relationship Latino Catholic Grade 12 Part-Time Group Home 

Alejandro 42 Man Heterosexual 

In a 

Relationship Latino Catholic Grade 12 Unemployed Group Home 

Jared 28 Man Heterosexual Single White 

Secular 

Judaism Bachelors Part-Time Independently 

Walter 33 Man Heterosexual Single White None Unclear Full-Time Independently 



Ph.D. Thesis – A. Santinele Martino; McMaster University - Sociology 

 29 

Clayton 34 Man Bisexual 

In a 

Relationship Mixed 

Catholic / 

Pagan High School Part-Time Independently 

Isabella 23 Woman Heterosexual 

In a 

Relationship Black None College Part-Time Group Home 

Nelson 30 Man Heterosexual Single Latino Christian Some college Full-Time Independently 

Jack 53 Man Heterosexual Single White None Grade 12 Unemployed Group home 

Amy 61 Woman Heterosexual 

In a 

Relationship White Protestant Grade 10 Retired Group home 

Jacob 55 Man Heterosexual Single White Catholic Grade 1 Full-Time Independently 

Julio 31 Man Heterosexual Single Black None University Part-Time Independently 

Charlotte 51 Woman Heterosexual Married White Christian University Full-Time Living with Partner 

Christopher 39 Man Heterosexual Single White None High School Part-Time Independently 

Patrick 39 Man Heterosexual Single 

Southeast 

Asian Catholic High School Part-Time Living with Family 

Charlie 41 Man Heterosexual Single White Catholic High School Unemployed Group Home 

Amelia 45 Woman Heterosexual Single White Catholic High School Part-Time Living with Family 

Leonard 40 Man Heterosexual Single White 

Anglican 

Church High School Full-Time Living with Family 

Joseph 37 Man Heterosexual Single White Catholic High School Unemployed Group Home 

Albert 44 Man Heterosexual 

In a 

Relationship Asian Church High School Unemployed Living with Family 

Bryan 36 Man Heterosexual Single Black 

United 

Church High School Part-Time Living with Family 

Tatianna 45 Woman Heterosexual Single White Catholic High School Part-Time Group Home 

Emerich 39 Man Heterosexual 

In a 

Relationship White None High School Part-Time Living with Family 

Ross 38 Man Heterosexual 

In a 

Relationship White None High School Part-Time Living with Family 



Ph.D. Thesis – A. Santinele Martino; McMaster University - Sociology 

 30 

Hector 40 Man Heterosexual Single Black Church 

Elementary 

School Part-Time Living with Family 

Carl 51 Man Heterosexual Single White None Unsure Unemployed Group Home 

Carolyn 64 Woman Heterosexual 

In a 

Relationship White Christian Middle School Unemployed Group Home 

Grace 38 Woman Heterosexual 

In a 

Relationship Asian Catholic High School Part-Time Living with Family 

Ryan 36 Man Heterosexual Single White Buddhism High School Part-Time Living with Family 

Arthur 34 Man Heterosexual Single White Catholic High School Unemployed Assisted Living 

Keith 24 Man Heterosexual Single White None High School Unemployed Assisted Living 

Chelsea 60 Woman Heterosexual Divorced White Catholic High School Unemployed Assisted Living 

Liam 46 Man Heterosexual 

In a 

Relationship Asian None High School Unemployed Assisted Living 

Scott 34 

Trans 

Man Heterosexual Single Mixed None High School Part-Time Group Home 

Virginia 31 

Trans 

Woman Heterosexual 

In a 

Relationship White None High School Part-Time Group Home 

 

  



Ph.D. Thesis – A. Santinele Martino; McMaster University - Sociology 

 31 

Analysis of Interview Data 

 

I followed a multi-step analytical process, starting with broad codes and then 

constructing categories and themes (Aurini, Heath, & Howells, 2016). Interviews 

were transcribed verbatim by me and a professional transcriptionist (who signed 

an oath of confidentiality, appendix L), and included a great level of detail, 

including pauses, laughter, and repetitions to capture contextualized 

representations of the interviews (Bloomberg & Volpe, 2012). While I recognize 

the benefits behind transcribing one’s own interviews (see, for example, Bird, 

2005), considering the number of interviews and time constraints, I opted for a 

combination. I assigned identification codes to the transcripts as soon as each was 

completed. Additionally, I kept notes of my observations of locations where I 

conducted interviews (e.g., group homes, day programs), interactions with 

participants, self-advocates, agency workers, and family members, as well as 

post-interview reflections.  

 

I examined the data from a structuralist-constructivist framework by using 

a thematic analysis. After transcribing interviews, I read the transcripts multiple 

times while listening to the audio recordings, keeping notes on preliminary 

themes. I used ATLAS.ti 8, a qualitative analysis software to store and conduct 

the formal coding of my interview transcripts and field notes. Initially, I 

conducted open coding (Corbin & Strauss, 2008), which generated an initial list 

of broad codes such as lack of privacy, infantilization, economic capital, and 

loneliness. Through a “line-by-line” coding, my coding was comprehensive, 

meaning that all parts were assigned a code or sometimes even more (Charmaz, 

2008, p. 155).  

 

I then conducted “axial coding” (Charmaz, 2006), which involves 

identifying relationships between codes that emerged in the open coding process. 

Finally, I conducted a thematic analysis of the data (Aurini et al., 2016; Braun & 

Clarke, 2006). The coding process was both “theory driven”, approaching the data 

with certain questions and a theoretical framework in mind, as well as “data 

driven” with codes “depend[ing] on the data” itself (Braun & Clarke, 2006, p. 18). 

The sexual fields literature drew my attention to themes such as a lack of access to 

sexual fields, sexual capital, erotic habitus, and gender habitus. I reread the 

transcripts at different points in the writing process to ensure that my writing 

reflected participants’ contextualized accounts.  

 

As Kvale (1996) importantly notes, it should not be assumed that research 

generates “knowledge claims that are so powerful and convincing in their own 

right [that] they […] carry the validation with them, like a strong piece of art” (p. 

252). It is important to maintain some criteria in terms of evaluating qualitative 

research (Guba & Lincoln, 1994). Ballinger (2006) recommends four main 

“considerations” for qualitative research scholars. Firstly, “coherence”, meaning 



Ph.D. Thesis – A. Santinele Martino; McMaster University - Sociology 

 32 

that choices in terms of the research purpose, research methods, and the role 

played by the researcher should be coherent (p. 240-241). Secondly, a “systematic 

and careful research conduct”, which involves sharing evidence that the 

researcher seriously considered in every step of the research process, including 

recruitment, interviewing, and participants’ representation (p. 241). Thirdly, a 

“convincing and relevant interpretation” of the research data, meaning that the 

researcher should provide a “credible and compelling” story of their data, such as 

by backing interpretations through relevant theoretical frameworks (p. 242). 

Finally, reflexivity and the ways that the researcher has shaped the research 

process and results should also be clearly acknowledged. In writing this 

dissertation, I took these considerations to heart with the intention of producing a 

coherent, thoughtful, convincing, and reflexive contribution to the literature.  

 

Advantages and Limitations of This Study  

 

With a few exceptions, little research has examined the romantic and sexual 

experiences of people with intellectual disabilities in more restrictive institutional 

and social settings (Fish, 2016; Rogers, 2016). For example, Löfgren-Mårtenson 

(2004) conducted participant observations at dances organized for young people 

with intellectual disabilities in Sweden, finding ways in which parents and staff 

controlled the sexualities of disabled people as well as how disabled people coped 

with those challenges. Another study in England used an ethnographic approach 

to explore the sexualities of women with intellectual disabilities in a secure unit, 

finding various restrictions to their intimate lives (Fish, 2016).  

 

Considering the well-documented social isolation, restrictions, and 

surveillance experienced by many people with intellectual disabilities (Feely, 

2016), an ethnographic approach to studying sexual fields occupied by people 

with intellectual disabilities is very difficult, especially for a graduate student. In 

Ontario, especially, there are significant levels of gatekeeping, particularly when 

it comes to sexuality. In our province, the opportunities that exist are most 

commonly created by developmental services. Furthermore, an ethnographic 

approach focused on particular sexual sites may not appropriately capture the 

experiences of some people with intellectual disabilities who may not have access 

to sexual fields.  

 

I also recognize that the metropolitan focus of my sample is a limit