‘Five rungs down’: encounters between disabled parents and the medical institution

References

• Ali, A., K. Scior, V. Ratti, A. Strydom, M. King, and A. Hassiotis. 2013. “Discrimination and Other Barriers to Accessing Health Care: Perspectives of Patients with Mild and Moderate Intellectual Disability and Their Carers.” PloS one 8 (8): E 70855. https://doi.org/10.1371/journal.pone.0070855.
   Web of Science ®Google Scholar
• Araujo, K., and D. Martuccelli. 2010. “La Individuación y el Trabajo de Los Individuos.” Educação e Pesquisa 36 (spe): 77–91. https://doi.org/10.1590/S1517-97022010000400007.
   Google Scholar
• Bamberg, M. 2006. “Stories: Big or Small: Why do we Care?” Narrative Inquiry 16 (1): 139–147. https://doi.org/10.1075/ni.16.1.18bam.
   Web of Science ®Google Scholar
• Battalova, A. 2019. “Ambivalent Subjectivities: Experiences of Mothers with Disabilities in Russia.” Disability & Society 34 (6): 904–925. https://doi.org/10.1080/09687599.2019.1580563.
   Web of Science ®Google Scholar
• Besoain-Saldaña, A., J. Bustamante-Bravo, J. Rebolledo Sanhueza, and E. Montt-Maray. 2023. “Experiences, Barriers, and Facilitators to Sexual and Reproductive Health Care Access of People with Sensory Impairments: A Scoping Review.” Sexuality and Disability 41 (2): 411–449. https://doi.org/10.11606/s1518-8787.2022056003893.
   Web of Science ®Google Scholar
• Brunson, J. 2010. “Visually Experiencing a Phone Call: The Calculated Consumer Labor Deaf People Perform to Gain Access through Video Relay Service.” Disability Studies Quarterly 30 (2). https://doi.org/10.18061/dsq.v30i2.
   Google Scholar
• Cahill, S. E., and R. Eggleston. 1994. “Managing Emotions in Public: The Case of Wheelchair Users.” Social Psychology Quarterly 57 (4): 300–312. https://doi.org/10.2307/2787157.
   Web of Science ®Google Scholar
• Camilleri Zahra, A. 2023. “Accessibility for Parents with Disability: Is it Reality or Fantasy?” Disability & Society 38 (5): 887–892. https://doi.org/10.1080/09687599.2023.2179477.
   Web of Science ®Google Scholar
• Carvajal, G., B. Rebolledo, S. J. Flández, T. N. Fariña, and V. Sierralta. 2021. “Salud Sexual y Reproductiva En Tiempos Del COVID- 19: Accesibilidad de Mujeres Sordas y Con Discapacidad Auditiva.” Revista Médica de Chile 149 (9): 1317–1321. https://doi.org/10.4067/S0034-98872021000901317.
   PubMedGoogle Scholar
• Convention on the Rights of Persons with Disabilities. 2006. https://www.un.org/esa/socdev/enable/documents/tccconvs.pdf
   Google Scholar
• Cruz Pérez, M. P. 2015. “Acceso a derechos sexuales y reproductivos de las mujeres con discapacidad: el papel de las y los prestadores de servicios.” Revista de Estudios de Género, La Ventana 5 (42): 7–45. https://doi.org/10.32870/lv.v5i42.5712.
   Google Scholar
• Deal, M. 2003. “Disabled People’s Attitudes toward Other Impairment Groups: A Hierarchy of Impairments.” Disability & Society 18 (7): 897–910. https://doi.org/10.1080/0968759032000127317.
   Web of Science ®Google Scholar
• DeVault, M., R. Garden, and M. Schwartz. 2011. “Mediated Communication in Context: Narrative Approaches to Understanding Encounters between Health Care Providers and Deaf People.” Disability Studies Quarterly 31 (4). https://doi.org/10.18061/dsq.v31i4.1715.
   Google Scholar
• Dillaway, H., and C. Lysack. 2015. “Most of Them Are Amateurs: Women with Spinal Cord Injury Experience the Lack of Education and Training among Medical Providers While Seeking Gynecological Care.” Disability Studies Quarterly 35 (3). https://doi.org/10.18061/dsq.v35i3.4934.
   PubMedGoogle Scholar
• Drainoni, M. L., E. Lee-Hood, C. Tobias, S. S. Bachman, J. Andrew, and L. Maisels. 2006. “Cross-Disability Experiences of Barriers to Health-Care Access: Consumer Perspectives.” Journal of Disability Policy Studies 17 (2): 101–115. https://doi.org/10.1177/10442073060170020101.
   Google Scholar
• Eide, A. H., H. Mannan, M. Khogali, G. Van Rooy, L. Swartz, A. Munthali, K. Hem, M. MacLachlanand, and K. Dyrstad. 2015. “Perceived Barriers for Accessing Health Services among Individuals with Disability in Four African Countries.” PLoS One 10 (5): e0125915. https://doi.org/10.1371/journal.pone.0125915.
   PubMed Web of Science ®Google Scholar
• Frederick, A. 2017a. “Risky Mothers and the Normalcy Project: Women with Disabilities Negotiate Scientific Motherhood.” Gender & Society 31 (1): 74–95. https://doi.org/10.1177/0891243216683914.
   Web of Science ®Google Scholar
• Frederick, A. 2017b. “Visibility, Respectability, and Disengagement: The Everyday Resistance of Mothers with Disabilities.” Social Science & Medicine (1982) 181: 131–138. https://doi.org/10.1016/j.socscimed.2017.03.030.
   PubMed Web of Science ®Google Scholar
• Ganle, J. K., E. Otupiri, B. Obeng, A. K. Edusie, A. Ankomah, and R. Adanu. 2016. “Challenges Women with Disability Face in Accessing and Using Maternal Healthcare Services in Ghana: A Qualitative Study.” PloS One 11 (6): e0158361. https://doi.org/10.1371/journal.pone.0158361.
   PubMed Web of Science ®Google Scholar
• Garland-Thomson, R. M. 2017. “Eugenic World Building and Disability: The Strange World of Kazuo Ishiguro’s Never Let Me Go.” The Journal of Medical Humanities 38 (2): 133–145. https://doi.org/10.1007/s10912-015-9368-y.
   PubMedGoogle Scholar
• Georgakopoulou, A. 2006. “Thinking Big with Small Stories in Narrative and Identity Analysis.” Narrative Inquiry 16 (1): 122–130. https://doi.org/10.1075/ni.16.1.16geo.
   Web of Science ®Google Scholar
• Hashemi G, Wickenden M, Bright T, Kuper H. 2022. “Barriers to Accessing Primary Healthcare Services for People with Disabilities in Low and Middle-Income Countries, a Meta-Synthesis of Qualitative Studies.” Disability and Rehabilitation 44 (8): 1207–1220. https://doi.org/10.1080/09638288.2020.1817984.
   PubMed Web of Science ®Google Scholar
• Herrera, F. 2020. “A Horror Movie with a Happy Ending’: Childbirth from the Father’s Perspective.” NORMA 15 (3-4): 251–266. https://doi.org/10.1080/18902138.2020.1767456.
   Google Scholar
• Herrera, F. 2022. “‘La mamá soy yo’: Experiencias parentales de madres y padres con discapacidad en Chile.” Psicologia Em Studo 27: 1–17. https://doi.org/10.4025/psicolestud.v27i0.58850.
   Google Scholar
• Herrera, F., and Y. Pavicevic. 2016. “Anticipating Fatherhood: ‘She is the One Who is Pregnant’.” Masculinities & Social Change 5 (2): 107–133. https://doi.org/10.17583/mcs.2016.2038.
   Google Scholar
• Hichins-Arismendi, M., and A. Yupanqui-Concha. 2022. “Barreras en el acceso a salud sexual y reproductiva: Experiencias de mujeres con discapacidad en el extremo sur de Chile.” ex æquo 46: 89–105. https://doi.org/10.22355/exaequo.2022.46.06.
   Google Scholar
• Iezzoni, L. I. 2011. “Eliminating Health and Health Care Disparities among the Growing Population of People with Disabilities.” Health Affairs 30 (10): 1947–1954. https://doi.org/10.1377/hlthaff.2011.0613.
   PubMed Web of Science ®Google Scholar
• Kassa, T. A., T. Luck, A. Bekele, and S. Riedel-Heller. 2016. “Sexual and Reproductive Health of Young People with Disability in Ethiopia: A Study on Knowledge, Attitude and Practice: A Cross-Sectional Study.” Globalization and Health 12 (1): 5. https://doi.org/10.1186/s12992-016-0142-3.
   PubMedGoogle Scholar
• Kuenburg, A., P. Fellinger, and J. Fellinger. 2016. “Health Care Access among Deaf People.” Journal of Deaf Studies and Deaf Education 21 (1): 1–10. https://doi.org/10.1093/deafed/env042.
   PubMed Web of Science ®Google Scholar
• Malacrida, C. 2009. “Performing Motherhood in a Disabling World: Dilemmas of Motherhood, Femininity and Disability.” International Journal of Qualitative Studies in Education 22 (1): 99–117. https://doi.org/10.1080/09518390802581927.
   Google Scholar
• Mason, J. 2002. Qualitative Researching. London: Sage.
   Google Scholar
• Ministerio de Desarrollo Social [Ministry of Social Development]. 2017. CASEN. Discapacidad. Síntesis de Resultados. Chile: Ministerio de Desarrollo Social. https://observatorio.ministeriodesarrollosocial.gob.cl/storage/docs/casen/2017/Casen_2017_Discapacidad.pdf
   Google Scholar
• Ministerio de Desarrollo Social [Ministry of Social Development]. 2021. Encuesta de Bienestar Social. Chile: Ministerio de Desarrollo Social. https://observatorio.ministeriodesarrollosocial.gob.cl/encuesta-bienestar-social
   Google Scholar
• Missing Billion Initiative. 2023. “The Missing Billion: Lack of Disability Data Impedes Healthcare Equity.” https://www.themissingbillion.org/the-reports
   Google Scholar
• Missing Billion Initiative, Clinton Health Access Initiative. 2022. “Reimagining Health Systems That Expect, Accept and Connect 1 Billion People with Disabilities.” https://www.themissingbillion.org/the-reports
   Google Scholar
• More, R. 2022. “Meanings of Parenting and Dis/Ability for Mothers and Fathers with Intellectual Disabilities in the Context of Social Work in Austria: Potentials of Deconstruction for Shifts in Meaning.” Qualitative Social Work 22 (5): 859–878. https://doi.org/10.1177/14733250221109765.
   Web of Science ®Google Scholar
• National Service of Disability [SENADIS] & Ministry of Social Development and Family. 2023. National Disability Study 2022 - ENDISC III. Santiago: SENADIS. https://www.senadis.gob.cl/descarga/i/7171/documento.
   Google Scholar
• Nguyen, A. 2020. “Challenges for Women with Disabilities Accessing Reproductive Health Care Around the World: A Scoping Review.” Sexuality and Disability 38 (3): 371–388. https://doi.org/10.1007/s11195-020-09630-7.
   Web of Science ®Google Scholar
• Okoro, C. A., N. D. Hollis, A. C. Cyrus, and S. Griffin-Blake. 2018. “Prevalence of Disabilities and Health Care Access by Disability Status and Type among Adults—United States, 2016.” MMWR. Morbidity and Mortality Weekly Report 67 (32): 882–887. https://doi.org/10.15585/mmwr.mm6732a3.
   PubMed Web of Science ®Google Scholar
• Ouellette-Kuntz, H. 2005. “Understanding Health Disparities and Inequities Faced by Individuals with Intellectual Disabilities.” Journal of Applied Research in Intellectual Disabilities 18 (2): 113–121. https://doi.org/10.1111/j.1468-3148.2005.00240.x.
   Web of Science ®Google Scholar
• Parchomiuk, M. 2014. “Social Context of Disabled Parenting.” Sexuality and Disability 32 (2): 231–242. https://doi.org/10.1007/s11195-014-9349-5.
   PubMed Web of Science ®Google Scholar
• Pharr, J. R., and M. Chino. 2013. “Predicting Barriers to Primary Care for Patients with Disabilities: A Mixed Methods Study of Practice Administrators.” Disability and Health Journal 6 (2): 116–123. https://doi.org/10.1016/j.dhjo.2012.11.003.
   PubMed Web of Science ®Google Scholar
• Pino-Morán, J., and P. Rodriguez-Garrido. 2019. “De-Generadas: La violencia institucional capacitista hacia mujeres con discapacidad en Chile.” Revista Estudios de Políticas Públicas 5 (1): 1–13. https://doi.org/10.5354/0719-6296.2019.50904.
   Google Scholar
• Prilleltensky, O. 2004. “My Child is Not my Career: Mothers with Physical Disabilities and the Well-Being of Children.” Disability and Society 19 (3): 209–223. https://doi.org/10.1080/0968759042000204185.
   Web of Science ®Google Scholar
• Redshaw, M., R. Malouf, H. Gao, and R. Gray. 2013. “Women with Disability: The Experience of Maternity Care during Pregnancy, Labour and Birth and the Postnatal Period.” BMC Pregnancy and Childbirth 13 (1): 174. https://doi.org/10.1186/1471-2393-13-174.
   PubMedGoogle Scholar
• Reichenberger V, Corona AP, Ramos VD, Shakespeare T, Hameed S, Penn-Kekana L, Kuper H. 2024. “Access to Primary Healthcare Services for Adults with Disabilities in Latin America and the Caribbean: A Review and Meta-Synthesis of Qualitative Studies.” Disability and Rehabilitation 3: 1–10. https://doi.org/10.1080/09638288.2024.2320268.
   Google Scholar
• Riessman, C. K. 2008. Narrative Methods for the Human Sciences. Los Angeles, CA: SAGE.
   Google Scholar
• Rodríguez Gatta, D., S. Rotenberg, K. Allel, V. Reichenberger, L. Morgon Banks, and H. Kuper. 2024. “Access to General Health Care among People with Disabilities in Latin America and the Caribbean: A Systematic Review of Quantitative Research.” Lancet Regional Health. Americas 32: 100701. https://doi.org/10.1016/j.lana.2024.100701.
   PubMedGoogle Scholar
• Sakellariou, D., and E. S. Rotarou. 2017a. “The Effects of Neoliberal Policies on Access to Healthcare for People with Disabilities.” International Journal for Equity in Health 16 (1): 199. https://doi.org/10.1186/s12939-017-0699-3.
   PubMedGoogle Scholar
• Sakellariou, D., and E. S. Rotarou. 2017b. “Utilisation of Cancer Screening Services by Disabled Women in Chile.” PloS One 12 (5): e0176270. https://doi.org/10.1371/journal.pone.0176270.
   PubMed Web of Science ®Google Scholar
• Sanmiquel-Molinero, L., J. Pujol-Tarrés, and M. Montenegro. 2023. “Latin American Perspectives on Parenthood and Disability: Vulnerability, Risk, and Social Inclusion.” Social Inclusion 11 (4): 338–349. https://doi.org/10.17645/si.v11i4.7046.
   Web of Science ®Google Scholar
• Valdebenito Acosta, F., and J. Hasbún Mancilla. 2018. “Brechas En La Atención Primaria De Salud A Personas en Situación de Discapacidad”. Subsecretaría de Redes Asistenciales, Ministerio de Salud. https://www.symbolon.cl/uploads/7/5/2/8/75280781/sintesis_resultados_psd_en_aps_2018.pdf
   Google Scholar
• Walsh-Gallagher, D., M. Sinclair, and R. Mc Conkey. 2012. “The Ambiguity of Disabled Women’s Experiences of Pregnancy, Childbirth and Motherhood: A Phenomenological Understanding.” Midwifery 28 (2): 156–162. https://doi.org/10.1016/j.midw.2011.01.003.
   PubMed Web of Science ®Google Scholar
• Wołowicz-Ruszkowska, A. 2016. “How Polish Women With Disabilities Challenge the Meaning of Motherhood.” Psychology of Women Quarterly 40 (1): 80–95. https://doi.org/10.1177/0361684315600390.
   Web of Science ®Google Scholar
• World Health Organization. 2022. Global Report on Health Equity for Persons with Disabilities. Geneva: World Health Organization.
   Google Scholar
• Yupanqui-Concha, A., M. Hichins-Arismendi, D. Mandiola-Godoy, P. Rodríguez-Garrido, and E. Rotarou. 2024. “Accessing Sexual and Reproductive Health Services in Chile: Women with Disabilities and Their Experience with Gynaecological and Obstetric Violence.” Sexuality Research and Social Policy 21 (2): 690–703. https://doi.org/10.1007/s13178-024-00942-3.
   Web of Science ®Google Scholar