Index
Disability and the Changing Contexts of Family and Personal Relationships
ISBN: 978-1-83753-221-6, eISBN: 978-1-83753-220-9
ISSN: 1479-3547
Publication date: 10 June 2024
This content is currently only available as a PDF
Citation
(2024), "Index", Ciciurkaite, G. and Brown, R.L. (Ed.) Disability and the Changing Contexts of Family and Personal Relationships (Research in Social Science and Disability, Vol. 15), Emerald Publishing Limited, Leeds, pp. 217-222. https://doi.org/10.1108/S1479-354720240000015014
Publisher
:Emerald Publishing Limited
Copyright © 2024 Gabriele Ciciurkaite and Robyn Lewis Brown. Published under exclusive licence by Emerald Publishing Limited
INDEX
Ableism
, 190
Access
, 11
Accessibility policies
, 11
American Community Survey (ACS)
, 47–48
American Diabetes Association (ADA)
, 162–163
Americans with Disabilities Act of 1990 (ADA)
, 140
Art-making
, 11
Artistry
, 8
approach
, 9
context
, 8–9
themes
, 10–20
Artists
, 8
Asian Values Scale-Revision (AVS-R)
, 166
Assisted living facilities
, 110, 115
Asylum for Idiots
, 62
Autism spectrum disorder (ASD)
, 104
background
, 104–105
common challenges
, 105–108
data collection and analysis
, 108–109
demographic data
, 110–111
interview procedure
, 109–110
quality of life after integration in institution and relationship with parents
, 112–113
quality of life after person’s integration in supported living home
, 111–112
research methodology
, 108–110
results
, 110–113
Autonomy
, 28
Autotheory
, 16, 20
Balance
, 8
Best interest of the child
, 63–66
Biological parents
, 71
Black scholarship in Canada
, 66
Bodymind
, 14–15
Burdens
, 149–153
Care
, 2
distribution
, 29–30
principles in changing context of family
, 74–76
theory
, 74
work
, 3
Caregivers
, 32–34, 186
couples parenting child with disabilities
, 190–195
couples’ work arrangements and gendered care in families
, 193–195
experiences of everyday life and parenting
, 192–193
parenthood as othering
, 195–197
parenthood in historical disability discourses
, 188–190
Caregiving
, 15
Caring society
, 29–30
Child behavior
, 124
Child custody
, 69
Child welfare system
, 3
Childcare centers
, 69
Childhood disability policy
, 64–65
Childhood Studies
, 63–64
Children with disabilities
, 30–31
Clinical family
, 141–142
Coding
, 108–109
Coleman v Attridge Law
, 30–31, 37
Commodification of care
, 65–66, 71, 73
best interest of child
, 65–66
care principles in changing context of family
, 74–76
constructions of disability
, 64–65
de-constructing disability institutions
, 67–74
good parent
, 66
status
, 66–67
Communication cycles
, 123
Community organizations
, 69
Constrained choice
, 2–3
Constructivist grounded theory
, 90
Content analysis (CA)
, 143–145
analysis
, 144–145
data
, 143–144
deductive codes
, 145
disabilities, families, and burdens
, 149–153
limitations
, 146
medical conceptualizations of disability and family
, 141–142
results
, 146–153
social science and research on disability and family
, 142–143
support systems for families with disabled family members
, 149
views of burden in medical discourse on disability and family
, 142
Coping
, 188–189
Couples’ work arrangements
, 193–195
Court of Justice of the European Union (CJEU)
, 38
COVID-19 pandemic
, 44
analyses
, 49–50
control variables
, 49
data and participants
, 47–48
dependent variable
, 48
disability
, 44–45
food insecurity
, 44–46
household structure, loneliness, and food insecurity
, 46–47
independent variables of interest
, 48–49
limitations
, 56–57
methods
, 47–50
results
, 50
variables
, 48–49
Creativity
, 2, 4, 16, 20
Crip sociology of fucking
, 210–212
Crip theory
, 206
“Crip time” concept
, 12
Critical Disability Studies
, 63–64
Cultural representation
, 86
Cultural sociology
, 143
Cultural values
, 163
Custodial care
, 73
Custody status
, 67
Cyprus
, 104–105
supported living in
, 107–108
Decision-making
interaction of Korean group with
, 168
across treatment conditions
, 168
Democratic equality
, 36
Dependency
, 2–3, 10, 13
Desire, missing discourse of
, 209
Developmental disabilities
, 204
Developmentalism
, 64–65
Diabetes mellitus
, 162–163
Disability
, 1, 3, 8, 28, 40, 44–45, 84–86, 140–141, 149, 153, 205–206
approach
, 9
arts
, 9
community
, 8
constructions of
, 64–65
context
, 8–9
cultural competence
, 29–30
de-constructing disability institutions
, 67–74
disability-centered organizing framework
, 2
esthetics
, 18
experts
, 186
medical conceptualizations
, 141–142
missing discourse of
, 209
policy
, 47–48
scholarship
, 1–2
services
, 69
social science and research on
, 142–143
studies
, 143
textual definitions
, 69–71
themes
, 10–20
views of burden in medical discourse on
, 142
Disabled artists
, 9, 11, 17, 19
Disabled child
, 64–65
Disabled childhoods
, 63
Disabled Peoples Interest Groups (DPIs)
, 197
Disabled Peoples Organizations (DPOs)
, 197
Disabled scholars
, 64
Disabled sexualities
, 204
Discrimination
, 30
by association
, 30, 37, 40
informal care
, 31, 34, 37
Documentation
, 70
Dominated care
, 39–40
Doulia
, 36–37
Down syndrome
, 123–124
Economic vulnerability
, 10
Effective parental decision-making
, 125
Embodied experience
, 84–85
Embodied mothering
, 14
Embodiment
, 2
Emerging adulthood
, 105–106
Emotions
, 122
analysis
, 128–129
being in haze/fog
, 129
fear
, 130
feeling overwhelmed
, 130
focus group format
, 127–128
frustration
, 130–131
joy in small things
, 131–132
literature review
, 122–125
method
, 127–129
in parental sensemaking
, 125–127
participants
, 127
protectiveness
, 132
recruitment
, 127
results
, 129–133
sadness
, 131
staying in moment
, 132–133
Episode profiling
, 90
Ethics of care
, 28, 31
Everyday life and parenting, experiences of
, 192–193
False dichotomy
, 3, 10–11
Familial disorder
, 153
Familial role terms
, 145
Familial structure terms
, 145
Familiarity as moderator of decision-making
, 170–175
Family
, 8, 141, 149, 153, 162
approach
, 9
context
, 8–9
involvement for people with ASD
, 105–106
medical conceptualizations
, 141–142
relationships
, 1, 3
social science and research on
, 142–143
studies scholarship
, 1–2
system
, 105
themes
, 10–20
views of burden in medical discourse on
, 142
Family-centered decision-making (FCDM)
, 164
data analyses
, 167
measures
, 166–167
methods
, 165–167
results
, 167–175
Federal poverty level (FPL)
, 49
Field recording
, 20
Financial state
, 107
Food insecurity
, 44–47, 52, 55
COVID-19 pandemic and
, 45–46
social isolation and
, 55–56
Food insufficiency
, 44
Formal caregivers
, 28–29
Free market economy
, 36
Gender
, 85–86, 186–187
Gendered care in families
, 193–195
Gendered experiences of reproduction
, 86
General familial terms
, 145
Genetic screening and testing
, 86
Good parent
, 63–64, 66
Guilt
, 188–190
Health and wellness
, 106–107
Healthy sexuality
, 205
social construction of
, 205
Historic institutionalization
, 62
Home and community-based services (HCBS)
, 55–56
House of Delegates (HOD)
, 144–145
Household structure
, 46–47, 52, 55
Hybrid identity
, 17
Hyperglycemia
, 86–87
Hypoglycemia
, 86–87
Identity
, 2, 4, 16, 20
Inclusive Early Childhood Service System (IECSS)
, 63
Indigenous programs
, 69
Individualized education plan (IEP)
, 123
Informal care
, 31, 34, 37
Informal caregivers
, 28–29
Information processing model
, 122–123
Information seeking
, 129
Injustice
, 30
Institutional care
, 63
Institutional decision-makers and practitioners
, 65–66
Institutional ethnography approach
, 67–74
Institutionalization
, 64
International Classification of Functioning, Disability and Health (ICF)
, 107
Interpersonal violence
, 2
Intersectional identity
, 17
Ketoacidosis
, 86–87
Labor of participation
, 71
Level of Contact scale
, 167
Liberal egalitarianism
, 34–35
Life course
, 84
List of Issues prior to Reporting (LOIPR)
, 104
Loneliness
, 46–47
Long Term Services and Supports (LTSS)
, 149
Masculinity
, 18
Masturbation
, 205
Meaning-making
, 140
Medical journals
, 141–142
Medicalization of sex and sexuality
, 206–208
Medicine
, 140
Mothering
, 14
National Survey on Health and Disability (NSHD)
, 47–48
Noise
, 146
Open-ended questions
, 110
Othering, parenthood as
, 195–197
Overburdening
, 188–190
Parental sensemaking, emotion in
, 125–127
Parenthood
in historical disability discourses
, 188–190
as othering
, 195–197
Parenting
, 11–12
Parents
, 122, 124, 186
behavior
, 124
coping skills
, 126
information processing
, 124
People with disabilities
, 45
Perceived effectiveness
, 166
Perceived satisfaction
, 166
Perceived severity as moderator of decision-making
, 168–170
Personal assistance services (PAS)
, 46–47, 55
Personal relationships
, 1
Perspective taking
, 166
Physicians
, 140, 142
Pleasure, missing discourse of
, 209
Political theory of care
, 30–31
Politics of care
, 31
Post-COVID-19 pandemic
, 10–11
Poverty
, 188
Power differentials
, 63
Power of custodial status
, 73–74
Public discourse
, 86
Qualitative research methods
, 108–109
Qualitative-oriented CA approach
, 145
Quality of life
, 104
after integration in institution and relationship with parents
, 112–113
after person’s integration in supported living home
, 111–112
Quantitative research methods
, 108–109
Recognition of caregivers
, 33
Registered status
, 67
Rehabilitation
, 187
Relational identity
, 16
Relationships
, 1
Reproduction
, 84
Reproductive trajectories
, 62
Risk management in reproduction
, 85–86
Scientific motherhood
, 124
Self-decision-making models
, 163–164
Sensemaking model
, 122–123
Settler-colonialism
, 63
Severity scale
, 166
Sexism
, 190
Sexual expression
, 204
Sexual health
, 205–207
Sexual minority respondents
, 56
Sexuality
, 205–206
Shared decision-making (SDM)
, 163
Social construction of “healthy sexuality”
, 205
Social forces
, 84
Social institutions
, 68
Social isolation and food insecurity
, 55–56
Social model of disability
, 28–29
Social science and research on disability and family
, 142–143
Social Security Disability Insurance (SSDI)
, 49
Social Security Income (SSI)
, 49
Sociological research
, 143
Sort and Sift approach
, 90
Special intervention discourses
, 187
Special parents
, 187, 197
Status
, 66–67
Steve Law
, 37
Stigma
, 190
Stigmatization
, 190
Structural violence
, 2
Subjectivation
, 4, 186, 195, 197
Suffering
, 188–189
Support systems for families with disabled family members
, 149
Supported living in Cyprus
, 107–108
Textual records
, 70
Tolerating uncertainty
, 125–126
Topic monitoring
, 90
Tragedy
, 188–190
Treaty Indian status
, 67
Type 1 diabetes (T1D)
, 84–85
body layer
, 95–97
data analysis
, 89–90
data collection
, 88
disability, gender, and risk management in reproduction
, 85–86
as empirical case
, 86–87
findings
, 90–97
interactional layer
, 93–94
methods
, 87–90
recruitment and sample
, 88
reflexivity
, 90
sample demographic characteristics
, 89
self-layer
, 94–95
structural and cultural layer
, 91–92
study design
, 87–88
Type 2 diabetes mellitus (T2DM)
, 162–163
UN Convention on the Rights of Persons with Disabilities (UN-CRPD)
, 189–190
United Nations Convention on the Rights of the Child (CRC)
, 65
Vulnerability
, 2, 10, 13
Women with disabilities
, 45
Work/life balance
, 33
Workplace accommodations
, 2–3
World Health Organization (WHO)
, 162–163
- Prelims
- Introduction to the Volume: Toward an Understanding of Disability and the Changing Contexts of Family and Personal Relationships
- Chapter 1 Disability, Family, Artistry: A Search for Balance and Access
- Part I Vulnerability and Dependency
- Chapter 2 From the Coleman Case to Disability Justice: An Examination of Discrimination by Association
- Chapter 3 Household Structure, Loneliness, and Food Insufficiency Among Working-Age Adults With Disabilities During the COVID-19 Pandemic
- Chapter 4 The Commodification of Care: Precarious Custodial Relationships, Disability, and Settler-Colonialism
- Part II Embodiment and Care
- Chapter 5 Experiences, Interpretations, and Cultural Representations of Type 1 Diabetes and Their Effects on Individual Reproductive Trajectories
- Chapter 6 Social Services and Support Structures for Adults With Autism Spectrum Disorder (ASD) and Their Parents' Quality of Life in Cyprus
- Chapter 7 The Role of Emotion in Caregiving Information Processing and Sensemaking for Parents of Children With Intellectual and Developmental Disabilities
- Chapter 8 The Meaning of Disability and Family in American Medicine: A Content Analysis of the Intersection of Disability and Family in the AMA's Proceedings From 1846 to 2022
- Part III Identity and Creativity
- Chapter 9 Family-Centered Decision-Making About Type 2 Diabetes Mellitus Among Koreans
- Chapter 10 Beyond Complicity or Allyship: Toward a New Understanding of Caregivers
- Chapter 11 Sense and Sensuality: A Call for a Crip Dialogue Moving Beyond the Language of “Sexual Health” and “Healthy Sexualities”
- Index