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Family, disability and (im)mobility: geographies of families with wheelchair-using children with cerebral palsy
Umeå University, Faculty of Social Sciences, Department of Geography.ORCID iD: 0000-0003-4642-2711
2023 (English)Doctoral thesis, comprehensive summary (Other academic)Alternative title
Familj, funktionsvariation och (im)mobilitet : att resa med rullstolsburna barn med cerebral pares (Swedish)
Abstract [en]

Mobility is important in shaping people’s lives and experiences through places visited and social interactions with other people. In families with children, mobilities are usually complex and include negotiations between various family members, affecting how they move about in time-space. While children in general often are dependent on parental support in relation to transport, children with disabilities tend to be even more reliant on their parents, not least because they are highly car dependent due to social and environmental barriers associated with other transport modes. This implies that not only disabled children, but also other family members, could be affected by disability related mobility constraints. 

This thesis focuses especially on mobilities of Swedish families with wheelchair-using children with cerebral palsy. Based on interviews, time-use diaries and a survey, I explore how disabling barriers affect families’ daily and tourism mobilities. I use a time-geographical framework, especially focusing on projects and constraints. 

My findings show that these families experience many constraints on mobilities and numerous negotiations and adaptations need to be done to enable mobility for all family members. Oftentimes, it is the disabled child’s mobility that is prioritised, which in everyday life often is related to an increased number of trips (e.g. appointments with physiotherapists, doctors and other authorities involved in healthcare) as well as longer distances travelled to reach accessible (pre)schools and leisure activities. Parents are often accompanying their children, which limits the time available for the parents’ own mobilities, impinges on their geographical reach and affect their possibilities on the labour market. A solution to improve opportunities for (independent) daily mobility for all family members is to have personal assistance in combination with special transport services for the disabled child, which are part of the Swedish support system. 

For tourism mobility, families often travel together and disabling barriers affect how and where they can travel. My findings show that these families have a limited set of tourism destinations that they can travel to. Disabling barriers on tourism mobility can be negotiated by leaving the disabled child at home or going on separate trips. This opens up mobility opportunities for the non-disabled family members, but can put further limitations on the mobility of the disabled child.

Place, publisher, year, edition, pages
Umeå: Umeå University , 2023. , p. 211
Series
GERUM, ISSN 1402-5205 ; 2023:1
Keywords [en]
family, disability, mobility, time geography
National Category
Human Geography
Research subject
Social and Economic Geography
Identifiers
URN: urn:nbn:se:umu:diva-208138ISBN: 978-91-8070-083-2 (print)ISBN: 978-91-8070-084-9 (electronic)OAI: oai:DiVA.org:umu-208138DiVA, id: diva2:1756095
Public defence
2023-06-09, UB.A.240, Samhällsvetarhuset, Umeå, 13:15 (Swedish)
Opponent
Supervisors
Available from: 2023-05-17 Created: 2023-05-10 Last updated: 2023-11-10Bibliographically approved
List of papers
1. Tourism destination choice sets for families with wheelchair-bound children
Open this publication in new window or tab >>Tourism destination choice sets for families with wheelchair-bound children
2018 (English)In: Tourism Recreation Resarch, ISSN 0250-8281, E-ISSN 2320-0308, Vol. 43, no 1, p. 26-38Article in journal (Refereed) Published
Abstract [en]

Families with disabled children encounter a range of mobility constraints when travelling for tourism purposes, yet how such constraints affect their ultimate destination choices is currently not well understood. This paper applies a destination choice set model to explain how families with wheelchair-bound children with cerebral palsy choose their holiday destinations. Interviews with 13 parents revealed that these families find many destinations unavailable due to various mobility and travel constraints, such as inaccessible modes of transport and accommodations. The destination choices are trade-offs between constraints and desires of the disabled child and other family members. The findings suggest that the destination choice set model for this particular target group should also consider an ‘accessible set’ of destinations with universal design when exploring travel-related decisions of these families. Finally, the paper argues for a more differentiated approach towards identifying and responding to travel constraints of families with disabled children.

Place, publisher, year, edition, pages
Routledge, 2018
Keywords
disability, travel constraints, destination choice set model, family vacation, mobility
National Category
Human Geography
Research subject
Social and Economic Geography
Identifiers
urn:nbn:se:umu:diva-138326 (URN)10.1080/02508281.2017.1362172 (DOI)000435555800003 ()2-s2.0-85027891956 (Scopus ID)881251 (Local ID)881251 (Archive number)881251 (OAI)
Available from: 2017-08-21 Created: 2017-08-21 Last updated: 2023-11-10Bibliographically approved
2. Everyday travel for families with children using wheelchairs: parents’ perceptions of constraints and adaptation strategies
Open this publication in new window or tab >>Everyday travel for families with children using wheelchairs: parents’ perceptions of constraints and adaptation strategies
2019 (English)In: Children's Geographies, ISSN 1473-3285, E-ISSN 1473-3277, Vol. 17, no 4, p. 388-400Article in journal (Refereed) Published
Abstract [en]

There is a norm assuming high mobility in the Western world today, which can increase the social and geographical exclusion of those who have limited possibilities to travel, such as people with disabilities. When it is a child who has the disability, travel-related constraints are likely to affect the whole family’s travel patterns. This study explores travel constraints among Swedish families with children with cerebral palsy who use wheelchairs. A time-geographical framework is employed. Interviews with parents show that these families’ everyday mobility is affected by authority, capacity and coupling constraints, and that it is often a combination of these constraints that makes travelling difficult. The families use different strategies to negotiate these constraints. In addition to strategies controlled by the families, the findings suggest that there is also a need for governmental support and a barrier-free transport system to enhance their mobility.

Keywords
children's mobility, disability, travel constraints, timegeography, family, accessibility
National Category
Human Geography
Research subject
Social and Economic Geography
Identifiers
urn:nbn:se:umu:diva-152104 (URN)10.1080/14733285.2018.1528342 (DOI)000476925100002 ()2-s2.0-85053887949 (Scopus ID)881251 (Local ID)881251 (Archive number)881251 (OAI)
Available from: 2018-09-27 Created: 2018-09-27 Last updated: 2023-11-10Bibliographically approved
3. Travel constraints and employment for parents with disabled children
Open this publication in new window or tab >>Travel constraints and employment for parents with disabled children
(English)Manuscript (preprint) (Other academic)
National Category
Human Geography
Identifiers
urn:nbn:se:umu:diva-208243 (URN)
Available from: 2023-05-12 Created: 2023-05-12 Last updated: 2023-11-10
4. Coupling constraints affecting daily mobilities of Swedish families with wheelchair-using children: [L’impact des contraintes de couplage sur la mobilité quotidienne des familles Suédoises avec des enfants en fauteuil roulant]
Open this publication in new window or tab >>Coupling constraints affecting daily mobilities of Swedish families with wheelchair-using children: [L’impact des contraintes de couplage sur la mobilité quotidienne des familles Suédoises avec des enfants en fauteuil roulant]
2023 (English)In: Social & Cultural Geography, ISSN 1464-9365, E-ISSN 1470-1197Article in journal (Refereed) Epub ahead of print
Abstract [en]

Mobility can involve many barriers that make it challenging for individuals with disabilities to travel. When it is a child who has a disability, the whole family’s mobility practices can be affected by those barriers since families’ mobilities are often intertwined. This paper is based on time-use diaries and interviews with parents of wheelchair-using children living in Sweden. A time-geographical framework is used in the paper, especially focusing on the concept of coupling constraints, which can emerge when individuals need to be together to perform an activity, such as mobility. The main focus is on how coupling constraints between parents and the disabled child affect mobilities, but the findings show that couplings also exist with authorities and things and these can increase coupling constraints within the family. However, if being eligible for personal assistance and special transport service the coupling constraints within the family can decrease, indicating that such support systems are fundamental for these families’ mobilities. This paper also shows that time geography can be useful for disability studies and add new dimensions to the relational perspective on disability.

Abstract [es]

La movilidad puede implicar muchas barreras que dificultan el viaje de las personas con discapacidad. Cuando se trata de un niño que tiene una discapacidad, las prácticas de movilidad de toda la familia pueden verse afectadas por esas barreras, ya que las movilidades de las familias a menudo están entrelazadas. Este artículo se basa en diarios de uso del tiempo y entrevistas con padres de niños que utilizan sillas de ruedas que viven en Suecia. En el artículo se utiliza un marco temporal-geográfico, centrándose especialmente en el concepto de restricciones de acoplamiento, que pueden surgir cuando los individuos necesitan estar juntos para realizar una actividad, como la movilidad. La atención se centra en cómo las limitaciones de acoplamiento entre los padres e hijos con discapacidad afectan la movilidad, pero los hallazgos muestran que también existen vínculos con las autoridades y las cosas, y estos pueden aumentar las limitaciones de acoplamiento dentro de la familia. Sin embargo, cuando se opta por asistencia personal y servicio de transporte especial, las restricciones de acoplamiento dentro de la familia pueden disminuir, lo que indica que dichos sistemas de apoyo son fundamentales para la movilidad de estas familias. Este artículo también muestra que la geografía del tiempo puede ser útil para los estudios sobre discapacidad y añadir nuevas dimensiones a la perspectiva relacional sobre la discapacidad. 

Abstract [fr]

Pour les personnes en situation de handicap, la mobilité peut impliquer beaucoup d’obstacles qui compliquent leurs déplacements. Quand c’est un enfant qui est handicapé, ces obstacles peuvent entraîner des répercussions sur les mobilités de toute la famille, puisque celles-ci sont souvent imbriquées. Cet article se fonde sur des journaux consignant l’emploi du temps et des entretiens avec des parents d’enfants en fauteuils roulants qui résident en Suède. On s’y sert d’une structure de géographie temporelle, qui cible en particulier le concept des contraintes de couplage : celles-ci peuvent apparaitre quand des personnes sont obligées d’être ensemble pour entreprendre une activité comme la mobilité. Il se concentre principalement sur l’effet que les contraintes de couplage entre les parents et l’enfant en situation de handicap a sur leurs mobilités, mais les résultats montrent qu’il y a aussi des couplages avec les autorités et les objets et que ceux-ci peuvent augmenter les contraintes de couplage au sein de la famille. Cependant, avec l’accès à l’assistance personnelle et à un service de transport adapté, ces contraintes peuvent diminuer pour la famille, et cela indique que ce type de système d’accompagnement est fondamental pour les mobilités de ces familles. L’article montre aussi que la géographie temporelle peut être utile pour les études sur le handicap et ouvre de nouvelles dimensions pour la perspective relationnelle sur le handicap.

Place, publisher, year, edition, pages
Routledge, 2023
Keywords
Disabled children, family, mobility, time geography, coupling constraints, time-use diaries, enfants handicapés, famille, mobilité, géographie temporelle, contraintes de couplage, journaux consignant l’emploi du temps, niñez con discapacidad, familia, movilidad, geografía del tiempo, restricciones de acoplamiento, diarios de uso del tiempo
National Category
Human Geography
Identifiers
urn:nbn:se:umu:diva-208244 (URN)10.1080/14649365.2023.2275746 (DOI)2-s2.0-85175489607 (Scopus ID)
Funder
Swedish Transport Administration, TRV 2017/19063Umeå University
Note

Originally included in thesis in manuscript form.

Alternative title: Restricciones de acoplamiento que afectan la movilidad diaria de familias Suecas con niños que utilizan sillas de ruedas

Available from: 2023-05-12 Created: 2023-05-12 Last updated: 2023-11-10

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  • Other locale
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Output format
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  • asciidoc
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