Complete Schedule

Presentation Type

Open Access Breakout Session

Keywords

Children with disabilities--Research--Moral and ethical aspects; Autonomy in children; Special education--Research--Moral and ethical aspects;

Abstract

The U.S. Department of Health and Human Services requires that research involving children, including highly vulnerable social categories of children, detail adequate provisions to solicit the assent of children (in addition to receiving parental permission). The purpose appears to recognize the autonomy of children.

In this presentation, we raise questions about the autonomy and rights of children in both research projects and educational/therapeutic practices (often the focus of research projects). Commonly, justification for research and/or practices proceeds from two seemingly complementary orientations: (1) a deficit/deficiency model of disability and (2) a utilitarian ethical consideration focused on a rather narrow analysis of costs and benefits.

The deficit model of disability (often referred to as a medical model) presumes an inherent and objectively measurable deficiency to social behavior and engagement that fall outside perceived norms. In a simplified sense, research and practices are implemented to correct or normalize the child. These efforts are presented as non-ideological, apolitical, and self-evidently positive. Rarely do we see legitimate efforts made to solicit the assent of children or to fully express to parents who exactly is benefitting from their signatures of permission and how. A brief history in disability research will be provided.

We will self-critically examine how this combination of deficit model and narrow cost/benefit analyses has colored certain of our own research efforts and IRB procedures. In other arenas, we will provide examples of how this has deeply influenced the trajectory of special education research and practice through so-called gold standard approaches involving Applied Behavior Analysis and adaptive skill development through means such as social scripting.

Recently, a social model of disability has emerged to challenge the dominant deficit model. Born of the disability rights movement, the social model suggests that human variation associated with disability need not inherently be interpreted as deficient. Differences might be just that, differences and not deficiencies. For example, the emergent neurodiversity movement argues that performances associated with the autism spectrum should not be approached as behaviors in need of correction and normalization, but should be recognized as part of the broad spectrum of being human. People labeled with autism are now generating a whole new genre of critique exploring their subjugation at the hands of researchers and therapists throughout their childhood. They are raising the demand of legitimate assent being procured prior to becoming human subjects. This is captured in the disability rights call to action: “Nothing about us without us.”

In response, we will propose a broad spectrum involving spheres of ethical concern that move us beyond utilitarian analyses. Included will be spheres that return us to issues of children’s vulnerability and autonomy as well as considerations associated with human emancipation and social justice. Multiple questions will be raised with the audience. Prominent among these is the gnawing concern over where the line is between research and practice as liberation versus research and practice as coercion and a demand for social conformity: Who decides and on what basis?

Start Date

18-9-2015 2:00 PM

End Date

18-9-2015 3:00 PM

Event Host

Center for Academic Ethics, University of Northern Iowa

Department

Department of Special Education

Comments

Location: Maucker Union - Breakout rooms

File Format

application/pdf

Share

COinS
 
Sep 18th, 2:00 PM Sep 18th, 3:00 PM

Vulnerability and Children with Disabilities: Ethical Spheres of Concern in Research and Practice

The U.S. Department of Health and Human Services requires that research involving children, including highly vulnerable social categories of children, detail adequate provisions to solicit the assent of children (in addition to receiving parental permission). The purpose appears to recognize the autonomy of children.

In this presentation, we raise questions about the autonomy and rights of children in both research projects and educational/therapeutic practices (often the focus of research projects). Commonly, justification for research and/or practices proceeds from two seemingly complementary orientations: (1) a deficit/deficiency model of disability and (2) a utilitarian ethical consideration focused on a rather narrow analysis of costs and benefits.

The deficit model of disability (often referred to as a medical model) presumes an inherent and objectively measurable deficiency to social behavior and engagement that fall outside perceived norms. In a simplified sense, research and practices are implemented to correct or normalize the child. These efforts are presented as non-ideological, apolitical, and self-evidently positive. Rarely do we see legitimate efforts made to solicit the assent of children or to fully express to parents who exactly is benefitting from their signatures of permission and how. A brief history in disability research will be provided.

We will self-critically examine how this combination of deficit model and narrow cost/benefit analyses has colored certain of our own research efforts and IRB procedures. In other arenas, we will provide examples of how this has deeply influenced the trajectory of special education research and practice through so-called gold standard approaches involving Applied Behavior Analysis and adaptive skill development through means such as social scripting.

Recently, a social model of disability has emerged to challenge the dominant deficit model. Born of the disability rights movement, the social model suggests that human variation associated with disability need not inherently be interpreted as deficient. Differences might be just that, differences and not deficiencies. For example, the emergent neurodiversity movement argues that performances associated with the autism spectrum should not be approached as behaviors in need of correction and normalization, but should be recognized as part of the broad spectrum of being human. People labeled with autism are now generating a whole new genre of critique exploring their subjugation at the hands of researchers and therapists throughout their childhood. They are raising the demand of legitimate assent being procured prior to becoming human subjects. This is captured in the disability rights call to action: “Nothing about us without us.”

In response, we will propose a broad spectrum involving spheres of ethical concern that move us beyond utilitarian analyses. Included will be spheres that return us to issues of children’s vulnerability and autonomy as well as considerations associated with human emancipation and social justice. Multiple questions will be raised with the audience. Prominent among these is the gnawing concern over where the line is between research and practice as liberation versus research and practice as coercion and a demand for social conformity: Who decides and on what basis?