Title |
When Disability Is Defined by Behavior, Outcome Measures Should Not Promote "Passing".
|
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Published in |
The AMA Journal of Ethic, July 2021
|
DOI | 10.1001/amajethics.2021.569 |
Pubmed ID | |
Authors |
Ari Ne'eman |
Abstract |
When disability is defined by behavior, researchers and clinicians struggle to identify appropriate measures to assess clinical progress. Some choose the reduction or elimination of diagnostic traits, implicitly defining typical appearance as the goal of service provision. Such an approach often interferes with more meaningful, person-centered goals; causes harm to people with disabilities; and is unnecessary for dealing with traits that are intrinsically harmful or personally distressing, such as self-injury. Disability stakeholders should reevaluate outcome measures that seek to eliminate disability-related traits that are stigmatized but not harmful. Using autism and the emergent neurodiversity movement as a case study, this article explores ethical challenges in selecting outcome measures in behaviorally defined disability diagnoses. |
X Demographics
Geographical breakdown
Country | Count | As % |
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United States | 49 | 28% |
United Kingdom | 20 | 12% |
Canada | 10 | 6% |
Germany | 2 | 1% |
Comoros | 2 | 1% |
Mexico | 2 | 1% |
Australia | 2 | 1% |
Ireland | 1 | <1% |
Sweden | 1 | <1% |
Other | 9 | 5% |
Unknown | 75 | 43% |
Demographic breakdown
Type | Count | As % |
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Members of the public | 137 | 79% |
Scientists | 23 | 13% |
Practitioners (doctors, other healthcare professionals) | 7 | 4% |
Science communicators (journalists, bloggers, editors) | 6 | 3% |
Mendeley readers
Geographical breakdown
Country | Count | As % |
---|---|---|
Unknown | 32 | 100% |
Demographic breakdown
Readers by professional status | Count | As % |
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Student > Master | 5 | 16% |
Student > Bachelor | 4 | 13% |
Student > Ph. D. Student | 4 | 13% |
Student > Postgraduate | 2 | 6% |
Student > Doctoral Student | 2 | 6% |
Other | 4 | 13% |
Unknown | 11 | 34% |
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---|---|---|
Psychology | 6 | 19% |
Social Sciences | 3 | 9% |
Medicine and Dentistry | 2 | 6% |
Neuroscience | 2 | 6% |
Sports and Recreations | 1 | 3% |
Other | 6 | 19% |
Unknown | 12 | 38% |