Research

Biomedical Technologies, Healthcare and Disability

My current research project seeks to understand how various biomedical technologies – including prenatal genetic testing and neurotechnologies – impact social and political understandings of disability. My work in this topic area has included a project on prenatal genetic counseling and perceptions of disability, medical genetics and activism in Kenya, and an upcoming project exploring the experiences of people who have received deep brain stimulation.

Related Publications and Presentations

Title Slide of presentation "The Obligations of Agency: Biomedical Technologies and Dis/Ability

Monteleone, R. (2019). The Obligations of Agency: Biomedical Technologies and Dis/Ability. National Women’s Studies Association, San Francisco, CA, November 14-17, 2019. Download slides here.

UntitledMonteleone, R. (2019). Account/Ability: Disability and Agency in Deep Brain Stimulation. Society for the Social Studies of Science, New Orleans, LA, September 4-7, 2019. Download Slides Here.

 

Monteleone, R. (2018). “We Can’t Predict What’s Going to Happen to Your Child”:  Prenatal Genetic Counseling and the Construction of Congenital Disability. Paper delivered at Remaking Reproduction: The Global Politics of Reproductive Technologies, Cambridge, UK.

Title

Monteleone, R. (2018). “If Your Genetics Aren’t as Good as the Next Person’s Genetics”: Prenatal Genetic Counseling as a Site of Controversy. Paper to be delivered at the Western Social Science Association Conference, San Antonio, Texas. Download Slides Here

 

Monteleone, R. (2018). Have we crossed the rubicon? Disability and contemporary eugenics. Eugenic Rubicon: California’s Sterilization Stories. http://scalar.usc.edu/works/eugenic-rubicon-/have-we-crossed-the-rubicon-disability-and-contemporary-eugenics-by-rebecca-monteleone.

Monteleone, R. (2017). Holding Space: Medical Genetics, Problem-Framing, and Persons with Disabilities. Paper delivered at the Disability and Social Justice in Kenya Symposium, Nairobi, Kenya.  Publication forthcoming.

Monteleone, R. (2017). Passing the Test: Perceptions of Disability in Prenatal Genetic Counseling Guidance and Practice. Poster presented at the Society of the Study of New and Emerging Technologies Annual Meeting, Phoenix, Arizona. Recipient of Best Poster Award  PDF Download.


Participation in Assistive Technology Development

Through my engagement with the NSF IGERT Alliance for Person-Centered Accessible Technology (APAcT), I have written on the importance of reconsidering when and by what methods “participatory research” is done, where it fails, and future directions for emancipatory work that values the experiential expertise of people with disabilities.

Related Publications and Presentations

Monteleone, R. (2018). Beyond participation: Empowering people with disabilities in research and design. Technology & Innovation (Special Issue: Technologies for Disabilities).

Monteleone, R. (2016). APAcT: Constructing Disability. Poster presented in special session at The International ACM SIGACCESS Conference on Computers and Accessibility, Reno, Nevada. PDF Download.


Disability Identity

My previous research grappled with understanding of how adults with intellectual disabilities experience their own disability, and any implications relating to self-esteem, stigma and social interactions.

Related Publications and Presentations

Monteleone, R. & Forrester-Jones, R. (2017). ‘Disability means, uh, dysfunctioning people: A qualitative analysis of the meaning and experience of disability among adults with intellectual disabilities. Journal of Applied Research in Intellectual Disability, 30 (2), 301-315. Online Access. 

  • ABSTRACT
    Background
    There has been little qualitative analysis of the experience of stigma, social comparisons and conception of identity among adults with intellectual disabilities (ID). This study aimed to develop an understanding of how adults with intellectual disabilities experience their own disability, and any implications relating to self‐esteem, stigma and social interactions.
    Materials and Methods
    Fifteen adults with intellectual disabilities were interviewed using semi‐structured, open‐ended questions regarding disability, social interactions and self‐esteem. Interviews were analysed independently by two researchers using interpretive phenomenological analysis.
    Results
    Three major themes emerged during analysis, exploring pressure on participants to behave in a socially normative way, tendency to produce personal definitions of disability and consistently limited knowledge of and discomfort around common disability terminology.
    Conclusions
    Participants’ clearly experienced feelings of difference, despite a lack of articulation. Limited understanding of both terminology and conceptualization of disability status could negatively impact self‐esteem, person‐centered actions and political movement.

Monteleone, R. (2016). “I honestly feel like I’m not there or something:” A qualitative study of the experience of intellectual disability. Presentation delivered at the International Association for the Scientific Study of Intellectual and Developmental Disability World Congress, Melbourne, Australia. Abstract printed in The Journal of Intellectual Disability Research, 60 (7-8), p. 710.

Monteleone, R. & Forrester-Jones, R. (2015). Has social policy challenged or continued personal experiences and understandings of ‘disability’? A qualitative study of people with intellectual disabilities. Paper delivered at the Social Policy Association Annual Conference, Belfast, Northern Ireland.

  • ABSTRACT
    Diagnostic labels can impact identity-formation and quality of life for individuals with intellectual disabilities (ID) (Gillman, Heyman, & Swain, 2000). The understanding of the term ‘disability’ to those who experience the ramifications of its clinical and political definition, however, has rarely been explored in depth. Similarly, whilst stigma is a well-studied phenomenon in this population (e.g. Szivos-Bach, 1993; Abraham et al, 2004), few studies qualitatively explore these issues. In the light of specialist social policies for people with ID such as Valuing People (2001) and Valuing People Now (2009), which foster rights, independence, choice and social inclusion, this study aimed to develop an understanding of how adults with ID experience their own disability and how this impacted their self-esteem,
    social interactions and stigma. The objective was to illuminate a functional definition of ‘disability’ by those living with ID which may act as a reference point for advocates, practitioners, researchers, and policy-makers.

Monteleone, R. (2015). Intellectual disabilities and social identity. Presentation delivered at Fulbright Forum, Belfast, Northern Ireland.


Community Inclusion and Justice

On-going throughout my academic career has been a commitment to community inclusion and justice. Research spans meditations on ableism to applied work on employment outcomes for adults with intellectual disabilities.

Related Publications and Presentations

Pimentel, M. & Monteleone, R. (2018). The Privileged Bodymind: The Entanglement of Ableism and Capitalism. International Journal of Economic Development, 12 (1). Online Access.

  • ABSTRACT
    When identifying and addressing the causes and consequences of ableism, it is necessary to consider capitalistic influences. When considering the inequalities produced or perpetuated by capitalism, it is necessary to consider ableism. Central to this connection are knowledge production systems that favor certain bodyminds and means of production. From these systems emerge both knowledge claims about ideal bodyminds as well as material artifacts and other technologies reproducing these claims. While the context of our argument is primarily that of the United States, it is our opinion that the linkages between ableism and capitalism have critical import elsewhere. Additionally, the application of anarchist thought to the ableist-capitalist relationship helps advance incisive critiques rooted in social constructionism and the interrogation of inequities rooted in a shared knowledge inheritance. This perspective piece aims not to be prescriptive, but to highlight oppressive linkages heretofore relegated to afterthought.

Monteleone, R. (2016). Employment for all: United states disability policy. Tizard Learning Disability Review, 21 (3), 154-161. Online Access.

  • ABSTRACT
    Purpose
    The purpose of this paper is to provide a brief overview of policy regarding employment for individuals with intellectual disabilities (ID) in the USA. Drawing from recent data, it assesses the impact of policy on current employment services and rates of employment.
    Design
    An introduction provides details regarding the benefits of employment for individuals with disabilities, current demographic information in the USA and salient definitions. Next, ten key national laws and one state law relating to employment for individuals with disabilities are outlined briefly. Finally, current outcomes for adults with disabilities are presented in order to assess the implementation and effectiveness of the legislation presented.
    Findings
    Whilst this paper is a policy review, and therefore no novel findings have been produced, it is clear by juxtaposing the mandates enacted by the US Government with practical outcomes that there is a need to assess implementation and effectiveness of such legislation.
    Value
    It is imperative to scrutinize policy in the context of practical outcomes in order to assess its viability and relevance. Additionally, it is crucial that practitioners and academics be aware of the legislation that impacts the populations with whom they interact. Finally, in the context of this publication, it is important that researchers and practitioners in the UK understand US policy, and likewise US professionals understand UK policies in order to facilitate greater cross-cultural communication and collaboration for the mutual benefit of both nations.

Monteleone, R. (2016). Disabled People, work and welfare: Is employment really the answer? A book review. Tizard Learning Disability Review, 21 (2), pp. 113-114

Monteleone. R. (2014). Heterogeneity within adult day services. Poster presented at the Seattle Club Conference, Canterbury, England.

Dabelko-Schoeny, H., Anderson, K., Monteleone, R., & Peters-Beumer, L. (2013). Identifying outcomes for a sea of diversity: A menu approach. Presentation delivered at National Adult Day Services Conference, Louisville, Kentucky. Online Access.

  • ABSTRACT
    As the population of younger adults with intellectual and developmental disabilities continues to grow, adult day services is positioned to be a key provider of community-based care and support. In this article, researchers examine how adult day centers that serve younger adults with intellectual and developmental disabilities differ from centers that serve older and mixed age groups. One-way analyses of variance and post hoc analyses of 490 adult day services centers (N = 490) revealed significant differences in terms of participant, staffing, and organizational characteristics. These findings have important implications for service providers, researchers, and policy makers.