Mingled bodies and voices: Maternal reflections on caregiver expertise and intellectual disability

The risk of viral infection during the COVID-19 pandemic has caused many hospitals to prohibit all patient visitors, including family caregivers for people with intellectual disabilities. Drawing on a postmodern, intersubjective view of the body, as well as my experience as the mother of a young adu...

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Bibliographic Details
Published inJournal of intellectual disabilities Vol. 26; no. 3; pp. 594 - 602
Main Author MacGregor, Laura
Format Journal Article
LanguageEnglish
Published London, England SAGE Publications 01.09.2022
Subjects
Advocacy
Caregivers
COVID-19
Expertise
Foreign Countries
Hospitals
Human Body
Mothers
Pandemics
Parent Attitudes
Parent Role
Severe Intellectual Disability
Canada
COVID-19
essential expertise
intersubjectivity
family caregiving
intellectual disability
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Summary:The risk of viral infection during the COVID-19 pandemic has caused many hospitals to prohibit all patient visitors, including family caregivers for people with intellectual disabilities. Drawing on a postmodern, intersubjective view of the body, as well as my experience as the mother of a young adult with profound disabilities, I argue that caregiver knowledge while unconventional within the medical paradigm must be viewed as essential expertise. People with profound intellectual disabilities often have concurrent, complex medical issues that are complicated by their inability to self-advocate. Optimal care rests upon the ongoing presence and expertise of their primary caregiver. Medical professionals risk patient care by excluding the essential expertise of family caregivers at any time, and specifically during COVID-19.
ISSN:1744-6295
1744-6309
DOI:10.1177/17446295211009339