Abstract

This review aims to disclose the gaps and needs for acknowledging the rights to experience motherhood of women with disabilities. To do so, we map how much is known about these women’s experience with motherhood, shedding light on their sexual and reproductive rights. The present work followed the scoping review by the Joanna Briggs Institute (JBI). This research is structured by elaborating the question, identifying the relevant studies, selecting the studies, extracting the data, sorting, summarizing, and creating reports based on the results. Results: we found 1050 articles, of which 53 were selected for the analysis. considering the different themes, we generated three axes: (1) infantilization, dehumanization, and discredit in the experience of motherhood; (2) obstetric ableism - an expression of violence in obstetrics; (3) reproductive justice - politicize motherhood and care. The study showed the urgent need to regard women with disabilities as people having the right to make sexual and reproductive health choices. Health professionals need permanent education to acknowledge and guarantee such a need as interweaving relationships to reach decision-making and autonomy.

Key words:
People with disabilities; Women’s health; Reproductive rights

Introduction

The objective of this scoping review¹1 Arksey H, O'Malley L. Scoping studies: towards a methodological framework. Int J Soc Res Methodol 2005; 8(1):19-32. is to show how important awareness becomes of motherhood experience for women with deficiency²2 Crenshaw K. Documento para o encontro de especialistas em aspectos da discriminação racial relativos ao gênero. Rev Estud Fem 2002; 10(1):171-188.^,33 Mello AG, Nuernberg A. Gênero e deficiência: interseções e perspectivas. Rev Estud Fem 2012; 20(3):635-655., and determine presences and absences.

Maternity is here defined as the desire, planning, pregnancy, delivery, and birth of a child, called the perinatal period. Although the existence of women with deficiency is not limited to experiencing maternity, it is often during pregnancy that many will have first contact with the health system, where they experience ableism and sexism by having reproductive rights violated.

Women with a deficiency should be recognized for needing personal assistance, support, and monitoring⁴4 Keith L, Morris J. Blancos fáciles: los derechos de la discapacidad discapacidad en el debate sobre los menores cuidadores. In: Morris J, compilador. Encuentros con desconocidas: Feminismo y discapacidad. Madrid: Narcea Ediciones; 1996. p. 109-138., and diversity of race, ethnicity, territory, class, and social orientation. A deficiency becomes an experience of social oppression when society cares little or nothing about human diversity⁵5 Union of the Physically Impaired Against Segregation (UPIAS). Fundamental Principles of Disability [Internet]. 1976. [cited 2021 maio 30]. Available from: https://disability-studies.leeds.ac.uk/wp-content/uploads/sites/40/library/UPIAS-fundamental-principles.pdf
https://disability-studies.leeds.ac.uk/w... ^,66 Abberley P. El concepto de opresión y el desarrollo de una teoría social de la discapacidad. In: Barton L, compilador. Superar las barreras de la discapacidad: 18 años de Disability and Society. Madrid: Ediciones Morata; 2008. p. 34-50.. Consequently, during pregnancy, health necessities and care of women with a disability may be prevented by barriers such as attitudes, architecture, and communications supported by social discrimination⁷7 Constantino C, Luiz KG, Costa LML, Silveira TBH, Bernardes V, organizadores. Guia Mulheres com Deficiência: Garantia de Direitos para Exercício da Cidadania [Internet]. 2020. [acessado 2021 maio 30]. Disponível em: https://www.crmpr.org.br/uploadAddress/Guia-Feminista-Helen-Keller[4447].pdf
https://www.crmpr.org.br/uploadAddress/G... . It is imperative to determine gaps in knowledge production and health care of motherhood of women with a disability regarding their functional expressions. Such an effort aims to subside research and promote public policies that foster sexual and reproductive rights currently provided by law in the scope of formal equality⁸8 Brasil. Presidência da República. Decreto n. 6.949, de 25 de agosto de 2009. Promulga a Convenção Internacional sobre os Direitos das Pessoas com Deficiência e seu Protocolo Facultativo, assinados em Nova York, em 30 de março de 2007. Diário Oficial da União 2009; 26 ago.^,99 Brasil. Presidência da República. Lei n. 13.146, de 6 de julho de 2015. Institui a Lei Brasileira de Inclusão da Pessoa com Deficiência (Estatuto da Pessoa com Deficiência). Diário Oficial da União 2015; 7 jul.. Ableism is an oppression system that sees human skills as a natural and hierarchical estate, placing people with disabilities at the top of the abjection pyramid, referring to the lack, correction of the body, impossibility, and deffect¹⁰10 Campbell FK. Contours of Ableism: the production of disability and abledness. London: Palgrave Macmillan; 2009.^,1111 Mello AG. Deficiência, incapacidade e vulnerabilidade: do capacitismo ou a preeminência capacitista e biomédica do Comitê de Ética em Pesquisa da UFSC. Cien Saude Colet 2016; 21(10): 3265-3276.. This set is based on compulsory ability¹¹11 Mello AG. Deficiência, incapacidade e vulnerabilidade: do capacitismo ou a preeminência capacitista e biomédica do Comitê de Ética em Pesquisa da UFSC. Cien Saude Colet 2016; 21(10): 3265-3276..

We perceive the right to motherhood of women with a disability as a right to care, social practice, and policies¹²12 Kittay EF. Dependency. In: Adams R, editor. Keywords for disability studies. USA: New York University Press; 2015. p. 54-58.. Historically, care is interpreted as a matter of women, in the domestic and private range¹³13 Tronto J. Mulheres e cuidados: o que as feministas podem aprender sobre a moralidade a partir disso? In: Jaggar AM, Bordo SR, organizadores. Gênero, corpo, conhecimento. Rio de Janeiro: Editora Rosa dos Tempos; 1997., or fixed as “health” at the most. Such a perception is forged by cultural models that cover the relational and material dimension of care, oppression reproduction, and social inequalities¹³13 Tronto J. Mulheres e cuidados: o que as feministas podem aprender sobre a moralidade a partir disso? In: Jaggar AM, Bordo SR, organizadores. Gênero, corpo, conhecimento. Rio de Janeiro: Editora Rosa dos Tempos; 1997.

14 Tronto J. Assistência democrática e democracias assistenciais. Soc Estado 2007; 22(2):285-308.

15 Moliner P. Cuidado, interseccionalidade e feminismo. Tempo Social 2014; 26(1):17-33.^-1616 Spinelli LM. Contra uma moralidade das mulheres: a crítica de Joan Tronto a Carol Gilligan. Ethic@ 2019; 18(2):245-262.. Processes of surveillance, control, and expectations create ideal models of motherhood, providing behavior and labels on how to deliver, breastfeed, or post-delivery behavior: a field of care genderized by oppressions and hybridizations. That naturalizes a given image of a caring woman, where women with a disability need to be justified. This supposed “naturalization” to care for women in general excludes women with a disability, marked as presumably disabled¹⁷17 Clímaco JC. Análise das construções possíveis de maternidades nos estudos feministas e da deficiência. Rev Estud Fem 2020; 28(1):e54235.^,1818 Belo LCO, Filho PO. Maternidade marcada: o estigma de ser mãe com deficiência visual. Saude Soc 2018; 27(3):957-967..

In other words, the same social space-time delimits reproduction and child care as women’s primary functions deny and discourage a woman with disability from becoming pregnant or a mother as an expression of care¹⁷17 Clímaco JC. Análise das construções possíveis de maternidades nos estudos feministas e da deficiência. Rev Estud Fem 2020; 28(1):e54235.. Concepts and norms operate before the body and motherhood, so-called expected or typical that “regards women with a disability or chronic diseases as unfit to care, unstable, and asexual”¹⁷17 Clímaco JC. Análise das construções possíveis de maternidades nos estudos feministas e da deficiência. Rev Estud Fem 2020; 28(1):e54235. (p. 8). This exclusion of sexuality and expressions about the life reproduction of Women with a disability regards Sexual and Reproductive Rights as human rights.

Referring to rights, the World Report on Disablity¹⁹19 Organização Mundial da Saúde (OMS). Relatório mundial sobre a deficiência. Brasília: OMS; 2011. resumes the Convention on the Rights of People with Disabilities (CRPD)²⁰20 Brasil. Convenção sobre os Direitos das Pessoas com Deficiência: Protocolo Facultativo à Convenção sobre os Direitos das Pessoas com Deficiência [Internet]. [acessado 2021 maio 12]. Disponível em: https://sisapidoso.icict.fiocruz.br/sites/sisapidoso.icict.fiocruz.br/files/convencaopessoascomdeficiencia.pdf
https://sisapidoso.icict.fiocruz.br/site... to emphasize that People with Disabilities hold legal capacity on equal terms with other people, among which the right to marry, constitute family, and maintain their fertility, as well as having ensured their access to sexual and reproductive. The bias that people with disabilities are asexual or should have their sexuality and fertility control is widespread, creating barriers to recognizing their sexual and reproductive rights. Therefore, specific actions in sexual and reproductive health care should be encouraged to guarantee a positive experience concerning the exercise of sexuality, the building of affective relationships, and their expression, if they so wish, in the experience of motherhood¹⁹19 Organização Mundial da Saúde (OMS). Relatório mundial sobre a deficiência. Brasília: OMS; 2011..

A scoping review allows us to determine the value of performing a complete and systematic review, identifying gaps as part of reviewing continuous process¹1 Arksey H, O'Malley L. Scoping studies: towards a methodological framework. Int J Soc Res Methodol 2005; 8(1):19-32..Breckenridge et al.²¹21 Breckenridge JP, Devaney J, Kroll T, Lazenbatt A, Taylor J, Bradbury-Jones C. Access and utilisation of maternity care for disabled women who experience domestic abuse: a systematic review. BMC Pregnancy Childbirth 2014; 14:234., when researching the access of women with disabilities who are victims of domestic violence, highlighted the need for additional research to explore the consequences of this type of violence, with women with disabilities playing a leading role.

Both the anti-ableist discussion on disability and the right of women with disabilities to exercise their sexuality, as well as guidance on their maternity plans, have little place in the training of health professionals. Thus, there is an urgent need to identify gaps in knowledge when applying a scoping review. Understanding the extent and nature of the literature on a given subject allows us to consider the value of future systematic reviews or gaps in the literature²²22 Vidal EIO, Fukushima FB. A arte e a ciência de escrever um artigo científico de revisão. Cad Saude Publica 2021; 37(4):e00063121..

As authors, we declare our commitment to the rights of women with disabilities and users of the Sistema Único de Saúde (Unified Health System). We believe that a scoping review mapping, understanding, and systematizing knowledge about their motherhood experiences may support care, training, guarantee of rights, and research.

Methodology

We followed the method of the Joanna Briggs Institute (JBI): formulate questions, identify relevant studies, select studies, collect data, sort, summarize, and report results²³23 Peters MDJ, Godfrey C, McInerney P, Munn Z, Tricco AC, Khalil H. Chapter 11: Scoping Reviews. In: Aromataris E, Munn Z, editors. JBI Manual for Evidence Synthesis [Internet]. 2020. [cited 2021 jan 10]. Available from: https://synthesismanual.jbi.global.doi.org/10.46658/JBIMES-20-12
https://synthesismanual.jbi.global.doi.o... . The related protocol²⁴24 Joana Briggs Institute. JBI Manual for Evidence Synthesis [Internet]. 2022. [cited 2022 fev 10]. Available from: https://jbi.global/scoping-review-network/resources
https://jbi.global/scoping-review-networ... has been published, allowing the disclosure to reviewers²³23 Peters MDJ, Godfrey C, McInerney P, Munn Z, Tricco AC, Khalil H. Chapter 11: Scoping Reviews. In: Aromataris E, Munn Z, editors. JBI Manual for Evidence Synthesis [Internet]. 2020. [cited 2021 jan 10]. Available from: https://synthesismanual.jbi.global.doi.org/10.46658/JBIMES-20-12
https://synthesismanual.jbi.global.doi.o... ^,2525 Peters MDJ, Marnie C, Tricco AC, Pollock D, Munn Z, Alexander L, McInerney P, Godfrey CM, Khalil H. Updated methodological guidance for the conduct of scoping reviews. JBI Evid Synth 2020; 8(10):2119-2126.^,2626 Tricco AC, Lillie E, Zarin W, O'Brien KK, Colquhoun H, Levac D, Moher D, Peters MDJ, Horsley T, Weeks L, Hempel S, Akl EA, Chang C, McGowan J, Stewart L, Hartling L, Aldcroft A, Wilson MG, Garritty C, Lewin S, Godfrey CM, Macdonald MT, Langlois EV, Soares-Weiser K, Moriarty J, Clifford T, Tunçalp Ö, Straus SE. PRISMA extension for scoping reviews (PRISMA-ScR): checklist and explanation. Ann Intern Med 2018; 169(7):467-473., registered with the OSF (Research and Data Management Software for Open Science)²⁷27 Morais FRC, Constancio DF, Costa LML, Moreira MCN. Women with disabilities and motherhood experience: scoping review protocol. RSD 2022; 11(4): e52511426755..

To formulate the question, we applied the population, concept, and context - PCC model²³23 Peters MDJ, Godfrey C, McInerney P, Munn Z, Tricco AC, Khalil H. Chapter 11: Scoping Reviews. In: Aromataris E, Munn Z, editors. JBI Manual for Evidence Synthesis [Internet]. 2020. [cited 2021 jan 10]. Available from: https://synthesismanual.jbi.global.doi.org/10.46658/JBIMES-20-12
https://synthesismanual.jbi.global.doi.o... , where “P” is women with a disability, “C” is motherhood situation, and “C” refers to sexual and reproductive rights.

The scoping review question is related to sub-questions of population, concept, and context atributes²³23 Peters MDJ, Godfrey C, McInerney P, Munn Z, Tricco AC, Khalil H. Chapter 11: Scoping Reviews. In: Aromataris E, Munn Z, editors. JBI Manual for Evidence Synthesis [Internet]. 2020. [cited 2021 jan 10]. Available from: https://synthesismanual.jbi.global.doi.org/10.46658/JBIMES-20-12
https://synthesismanual.jbi.global.doi.o... . Our core question is: how the sexual and reproductive rights of women with a disability are recognized in research considering their motherhood experiences? Sub questions are: which aspects qualitative researchers highlight in the motherhood experience of women with a disability?

The Search strategy focuses on articles published and guided by librarians to define the search term from the descriptions available in the health area (DeCS). Our terms were “disabled persons” AND “pregnancy”, with a pilot search in August 2021, in the databases: PUBMED (National Library of Medicine, which includes Medline), and Lilacs (Latin-American and the Caribbean Literature on Health Sciences), assessing the thematic reach and identifying indexation terms and key words (Chart 1).

We were surprised by the number of articles found from the descriptors since we started the search using descriptors for people with a disability - “Disabled person” (equivalent to P, population), and Pregnancy - “pregnancy”, given that there is no equivalent for motherhood (equivalent to C, concept). Many articles refer to not being human or several persons with a disability or caregivers of persons with a disability, and we chose to make a test by adding the word Woman - “Woman”. When adding the descriptor for reproductive rights - “reproductive rights” (equivalent to C, context) - fewer articles were likely to be implicit in the other pieces.

From this pilot search, we found other keywords and descriptors used in relevant articles to elaborate a complete search strategy. We noticed that the more descriptors we added, the more identified articles varied. We accept the librarian’s suggestions and, inspired by other scoping reviews²⁸28 Alves GMG, Almeida AGCS, Licetti MM, Costa CMO, Araújo KCGM. Relevância do grau de incapacidade física como preditor de diagnóstico tardio em hanseníase: uma revisão de escopo. Res Soc Dev 2021; 10(6):e5410615399.

29 Silva AB, Sindico SRF, Carneiro AC, Henrique SM, Fernandes AG, Gomes JP, Marinho TP, Fernandes VR. COVID-19 remote consultation services and population in health inequity-concentrating territories: a scoping review. Telemed J E Health 2021; 27(8):881-897.

30 Galvão ALM, Oliveira E, Germani ACCG, Luiz OC. Determinantes estruturais da saúde, raça, gênero e classe social: uma revisão de escopo. Saude Soc 2021; 30(2):e200743.^-3131 Santos MV, Alves VH, Rodrigues DP, Tavares MR, Guerra JVV, Calandrine TSS, Marchiori GRS, Dulfe PAM. Proteção e apoio ao aleitamento materno no espaço prisional: uma scoping review. Cien Saude Colet 2022; 27(7):2689-2702., and in the search strategy, we assumed several descriptors connections depending on the database and periodicals consulted.

The descriptors used were “disabled persons”, “disabled person”, “pregnancy”, “pregnant women”, and “reproductive right”, associated with the Booleans operators AND. We used the operator OR to broaden our searches with the words “motherhood” and “women with a disability” which are not descriptors registered in the DeCS, but terms used in usual language. Being synonyms, it assisted the strategy to broaden the number of references. The Search strategy using keywords and identifying indexed words (search key) was adapted to each source of information, according to Chart 2.

We selected PubMed as a reference for international articles, SciELO, because it covers many Brazilian articles offering access to the full text, and Lilacs as a reference for Latin-American pieces. We included the periodical Disability & Society since it is recognized for publishing Disability Studies.

When verifying the references in the identified articles, we included eight other articles, including English, Portuguese, and Spanish, from 2007 to 2021.

The selected articles were listed, and their full texts were transferred and stored in Zotero, eliminating duplicates, and later analyzed by reviewers. Articles not complying with the inclusion criteria and not responding to the purpose of this study were excluded from registering justification. The stages above are summarized according to the flowchart suggested on the JBI webpage, PRISMA-ScR²⁶26 Tricco AC, Lillie E, Zarin W, O'Brien KK, Colquhoun H, Levac D, Moher D, Peters MDJ, Horsley T, Weeks L, Hempel S, Akl EA, Chang C, McGowan J, Stewart L, Hartling L, Aldcroft A, Wilson MG, Garritty C, Lewin S, Godfrey CM, Macdonald MT, Langlois EV, Soares-Weiser K, Moriarty J, Clifford T, Tunçalp Ö, Straus SE. PRISMA extension for scoping reviews (PRISMA-ScR): checklist and explanation. Ann Intern Med 2018; 169(7):467-473., (Flowchart 1). The eligible articles were distributed to reviewers, followed by a form with the guiding question, “how sexual and reproductive rights of women with a disability are recognized in research considering their motherhood experience?”. The form was applied to the selected articles and generated in Supplementary Chart, available at: https://doi.org/10.48331/scielodata.OZOBW6.

Results and discussions

Of the 1,050 articles identified, we gathered 1005 to read the titles and abstracts without duplicates. Afterward, we excluded 907, leaving 98 for full reading, of which 54 were selected for this analysis. We established 2007 as the start of the search, the year of the United Nations International Convention on the Rights of Persons with Disabilities, a milestone for human rights and the dignity of people with disabilities. In the searches, the first articles date back from 2010 to 2012 - there were five. After that, production increased, converging with recognition of the sexual and reproductive rights of people with disabilities in the World Report on Disabilities in 2012. From 2013-2017, we gathered 24 articles and 24 articles from 2018 to August 2021.

We gathered articles from 21 countries, mainly from the USA with 13, Brazil with 10, Canada with 4, and Ireland with 3. From South Africa, Spain, Chile, Ghana, Austria and Israel. One publication: Ethiopia, Scotland, Australia, United Kingdom, Cameroon, Poland, Uganda, Nepal, Portugal, Mexico, and Iceland, two articles each.

As for the method and techniques, 37 articles applied individual or focus-group interviews with women with disabilities, and 1 article used blog reports by women with disabilities. Almost 70% of the articles include the accounts of the women themselves. Although some aimed not to investigate the motherhood experience itself³⁵35 Cruz Pérez MP. Mitos acerca de la maternidad en mujeres con discapacidad. Perinatol Reprod Hum 2014; 28:91-96.^,4242 Jones BS, Duarte BT, Astorga UN, Pardo M, Sepúlveda R. Aproximación a la experiencia de cuerpo y sexualidad de un grupo de mujeres chilenas con discapacidad física congénita. Rev Chil Ter Ocup 2015; 15:19-32.

43 Gesser M, Nuernberg AH, Toneli MJF. Constituindo-se sujeito na intersecção gênero e deficiência: relato de pesquisa. Psicol Estud 2013; 18(3):419429.

44 Nicolau SM, Schraiber LB, Ayres JR CM. Mulheres com deficiência e sua dupla vulnerabilidade: contribuições para a construção da integralidade em saúde. Cien Saude Colet 2013; 18(3):863-872.^-4545 Yupanqui-Concha A, Aranda-Farias C, Ferrer-Perez VA. Prácticas de salud de dominación y exclusión: visiones de activistas, profesionales e investigadoras sobre situación de esterilizaciones forzadas en mujeres y niñas con discapacidad en España. Saude Soc 2021; 30(1):e200107. the interviewees overvalued it when mentioning their sexuality stories. For this reason, they are also included here. Another seven articles are in the theoretical-analytical or review category (one is a scoping review, and two integrative reviews), three are case studies, and four investigated health professionals.

Following the scoping review method, our analysis was subject to a theoretical discussion on sexual and reproductive rights, supported by the female ethics of care, intersectionality, interdependence, and reproductive justice⁸⁴84 Diniz D. O que é deficiência. São Paulo: Brasiliense; 2007.

85 Tronto JC. Caring democracy: markets, equality, and justice. New York: NYU Press; 2013.

86 Collins PH, Bilge S. Interseccionalidade. São Paulo: Boitempo; 2020.^-8787 Gesser M, Fietz H. Ética do cuidado e a experiência da deficiência: uma entrevista com Eva Feder Kittay. Rev Estud Fem 2021; 29(2):e64987..

A critical and reflective reading of the collection generated three axles: infantilization, dehumanization, and discredit in motherhood experience; obstetric ableism: expression of obstetric violence; Reproductive Justice: politized motherhood and care.

Infantilization, dehumanization, and discredit in motherhood experience

For women with disabilities, prejudice and discrimination related to the exercise of motherhood emerge in family and close relationships¹⁸18 Belo LCO, Filho PO. Maternidade marcada: o estigma de ser mãe com deficiência visual. Saude Soc 2018; 27(3):957-967.^,3232 Pinto PC. "The maternal is political": exploring mothering among women with disability. Ex Aequo 2011; 23:67-81.

33 Lima DS, Silva LR, Rocha CR, Teixeira SVB, Paiva MS. Care of wheelchair pregnant women in the light of Collière's theory. Rev Bras Enferm 2020; 73(4):e20180755.

34 Chisale SS. "Disabled motherhood in an African community": towards an African women theology of disability. In Skriflig 2018; 52:1-9.^-3535 Cruz Pérez MP. Mitos acerca de la maternidad en mujeres con discapacidad. Perinatol Reprod Hum 2014; 28:91-96.^,3737 Carvalho CFS, Brito RS. The support network in pregnancy and childbirth: the conceptions of women with physical disability. Texto Contexto Enferm 2016; 25(2):e0600015.

38 Santos RS, Ribeiro VM. Transition of blind women to motherhood from the perspective of Transitions Theory. Rev Bras Enferm 2020; 73(Suppl. 4):e20190234.^-3939 Santos LFM, Janini JP, Souza VM, Santos RS. Transition to motherhood and mothering for women in wheelchairs: a nursing perspective. Rev Bras Enferm 2019; 72(Suppl. 3):290-296.^,4141 Dehays PM, Hichins AM, Vidal CV. Análisis del significado de las ocupaciones atribuidas a ser mujer y madre para mujeres con discapacidad intelectual en la cuidad de Punta Arenas. Rev Chil Ter Ocup 2012; 12:11-18.^,4242 Jones BS, Duarte BT, Astorga UN, Pardo M, Sepúlveda R. Aproximación a la experiencia de cuerpo y sexualidad de un grupo de mujeres chilenas con discapacidad física congénita. Rev Chil Ter Ocup 2015; 15:19-32.^,4444 Nicolau SM, Schraiber LB, Ayres JR CM. Mulheres com deficiência e sua dupla vulnerabilidade: contribuições para a construção da integralidade em saúde. Cien Saude Colet 2013; 18(3):863-872.^,5050 Powell RM, Mitra M, Smeltzer SC, Long-Bellil LM, Smith LD, Iezzoni LI. Family attitudes and reactions toward pregnancy among women with physical disabilities. Womens Health Issues 2017; 27(3):345-350.

51 Litchman ML, Tran MJ, Dearden SE, Guo J-W, Simonsen SE, Clark L. What women with disabilities write in personal blogs about pregnancy and early motherhood: qualitative analysis of blogs. JMIR Pediatr Parent 2019; 2(1):e12355.

52 Devkota HR, Kett M, Groce N. Societal attitude and behaviours towards women with disabilities in rural Nepal: pregnancy, childbirth and motherhood. BMC Pregnancy Childbirth 2019; 19:20.^-5353 Kalpakjian CZ, Kreschmer JM, Slavin MD, Kisala PA, Quint EH, Chiaravalloti ND, Jenkins N, Bushnik T, Amtmann D, Tulsky DS, Madrid R, Parten R, Evitts M, Grawi CL. Reproductive health in women with physical disability: a conceptual framework for the development of new patient-reported outcome measures. J Womens Health (Larchmt) 2020; 29(11):1427-1436.^,5656 Walsh-Gallagher D, Sinclair M, Mc Conkey R. The ambiguity of disabled women's experiences of pregnancy, childbirth and motherhood: a phenomenological understanding. Midwifery 2012; 28(2):156-162.^,5757 Ganle JK, Apolot RR, Rugoho T, Sumankuuro J. "They are my future": childbearing desires and motivations among women with disabilities in Ghana - implications for reproductive healthcare. Reprod Health 2020; 17(1):151.^,6060 Peterson-Besse JJ, Knoll JE, Horner-Johnson W. Internet networks as a source of social support for women with mobility disabilities during pregnancy. Disabil Health J 2019; 12(4):722-726.

61 LaPierre TA, Zimmerman MK, Hall JP. "Paying the price to get there": Motherhood and the dynamics of pregnancy deliberations among women with disabilities. Disabil Health J 2017; 10(3):419-425.^-6262 Ganle JK, Otupiri E, Obeng B, Edusie AK, Ankomah A, Adanu R. Challenges women with disability face in accessing and using maternal healthcare services in Ghana: a qualitative study. PLoS One 2016; 11(6):e0158361.^,6464 Lawler D, Begley C, Lalor J. (Re)constructing Myself: the process of transition to motherhood for women with a disability. J Adv Nurs 2015; 71(7):1672-1683.

65 Mazurkiewicz B, Stefaniak M, Dmoch-Gajzlerska E. Perinatal care needs and expectations of women with low vision or total blindness in Warsaw, Poland. Disabil Health J 2018; 11(4):618-623.

66 Apolot RR, Ekirapa E, Waldman L, Morgan R, Aanyu C, Mutebi A, Nyachwo EB, Seruwagi G, Kiwanuka SN. Maternal and newborn health needs for women with walking disabilities; "the twists and turns": a case study in Kibuku District Uganda. Int J Equity Health 2019; 18(1):43.

67 Schildberger B, Zenzmaier C, König-Bachmann M. Experiences of Austrian mothers with mobility or sensory impairments during pregnancy, childbirth and the puerperium: a qualitative study. BMC Pregnancy Childbirth 2017; 17:201.^-6868 Iezzoni LI, Wint AJ, Smeltzer SC, Ecker JL. "How did that happen?" Public responses to women with mobility disability during pregnancy. Disabil Health J 2015; 8(3):380-387.^,7070 Tarasoff LA. Experiences of women with physical disabilities during the perinatal period: a review of the literature and recommendations to improve care. Health Care Women Int 2015; 36(1):88-107.^,7676 Nguyen TV, King J, Edwards N, Dunne MP. "Under great anxiety": pregnancy experiences of Vietnamese women with physical disabilities seen through an intersectional lens. Soc Sci Med 2021; 284:114231.^,7777 Malouf R, McLeish J, Ryan S, Gray R, Redshaw M. "We both just wanted to be normal parents": a qualitative study of the experience of maternity care for women with learning disability. BMJ Open 2017;7:e015526.^,7979 Bremer K, Cockburn L, Ruth A. Reproductive health experiences among women with physical disabilities in the Northwest Region of Cameroon. Int J Gynaecol Obstet 2010; 108(3):211-213.. The “overprotection” category leads to processes of infantilization of women with disabilities. This process, discussed in the light of Goffman⁸⁸88 Goffman E. Estigma: notas sobre a manipulação da identidade deteriorada. Rio de Janeiro: Livros Técnicos e Científicos; 1988. in the tension between virtual and real identity, leads to an understanding that people living with a stigma can perceive themselves as discredited or potentially discreditable due to what is expected of their performance. Such social interaction processes are closely related to symbolic mediations between the real needs of people with disabilities and the stereotypes attributed to them based on ideals of body normativity feed into ableist structures¹¹11 Mello AG. Deficiência, incapacidade e vulnerabilidade: do capacitismo ou a preeminência capacitista e biomédica do Comitê de Ética em Pesquisa da UFSC. Cien Saude Colet 2016; 21(10): 3265-3276.. The stigmatized people are not passive before those diminishing structures; on the contrary, they realize and sometimes denounce them. However, such an oppression system may be so powerful that disregard any denouncing. For that reason, some stigmatized people, depending on the environment, use the mark of their stigma as a strategy to assume an identity¹⁰10 Campbell FK. Contours of Ableism: the production of disability and abledness. London: Palgrave Macmillan; 2009.. People who live with stigmas branding them as unique - distinctive marks or characteristics - are not passive in the face of these structures¹⁰10 Campbell FK. Contours of Ableism: the production of disability and abledness. London: Palgrave Macmillan; 2009..

Infantilization is a social construction that removes subjects from their place of authority over their feelings, thoughts, and desires. By being regarded by Family members as eternal children, as mentioned in some articles, women with a disability are often discredited and perceived as unfit to affirm motherhood and sexuality. Interpreting the disabled body as inappropriate, which fundaments discrimination, should not be confused with the need to be recognized and required for care. We point out that the so-called body impairments, which may broadly vary within the different groups of disabilities, are interpreted as symbols of the risk of bearing a child with a disability. Two of the articles studied mention this as a fear of ancestors or a family curse³⁴34 Chisale SS. "Disabled motherhood in an African community": towards an African women theology of disability. In Skriflig 2018; 52:1-9.^,5252 Devkota HR, Kett M, Groce N. Societal attitude and behaviours towards women with disabilities in rural Nepal: pregnancy, childbirth and motherhood. BMC Pregnancy Childbirth 2019; 19:20.. Such attitudes from close people - parents, caregivers, friends, or neighbors - have caused frustrated Dreams, sterilization, and forced abortions imposed by the legal guardians³⁵35 Cruz Pérez MP. Mitos acerca de la maternidad en mujeres con discapacidad. Perinatol Reprod Hum 2014; 28:91-96.^,5858 Streur CS, Schafer CL, Garcia VP, Quint EH, Sandberg DE, Kalpakjian CZ, Wittmann DA. "He told me it would be extremely selfish of me to even consider [having kids]": the importance of reproductive health to women with spina bifida and the lack of support from their providers. Disabil Health J 2020; 13(2):100815.^,7171 Rothler R. Disability rights, reproductive technology, and parenthood: unrealised opportunities. Reprod Health Matters 2017; 25(50):104-113., a prejudice directly exercised by the spouse who often results in distancing and abandonment³⁷37 Carvalho CFS, Brito RS. The support network in pregnancy and childbirth: the conceptions of women with physical disability. Texto Contexto Enferm 2016; 25(2):e0600015.^,3939 Santos LFM, Janini JP, Souza VM, Santos RS. Transition to motherhood and mothering for women in wheelchairs: a nursing perspective. Rev Bras Enferm 2019; 72(Suppl. 3):290-296., and an immeasurable mark of pain and suffering for women. Compulsory sterilization regards biopolitics ruling women’s bodies, particularly violent on those interpreted as being at risk, over whom the state is present by its representatives, imposing restrictions on rights⁸⁹89 Bevervanço RB. Direitos sexuais e reprodutivos e a esterilização da pessoa com deficiência [Internet]. [acessado 2023 jan 6]. Disponível em: http://www.mpsp.mp.br/portal/page/portal/cao_civel/aa_ppdeficiencia/Direitos%20sexuais%20e%20reprodutivos%20e%20a%20esteriliza%C3%A7%C3%A3o%20da%20pessoa%20com%20defici%C3%AAncia.pdf
http://www.mpsp.mp.br/portal/page/portal... ^,9090 Cunha CC, Moreira MCN. Dimensões biopolíticas da Portaria no 13/2021 do Ministério da Saúde: impactos nos direitos e no enfrentamento de estigmas de determinados grupos de mulheres. Cad Saude Publica 2021; 37(7):e00124621..

Other analyses summarize the role expected of women with a disability when experiencing pregnancy¹⁷17 Clímaco JC. Análise das construções possíveis de maternidades nos estudos feministas e da deficiência. Rev Estud Fem 2020; 28(1):e54235.^,1818 Belo LCO, Filho PO. Maternidade marcada: o estigma de ser mãe com deficiência visual. Saude Soc 2018; 27(3):957-967.^,3232 Pinto PC. "The maternal is political": exploring mothering among women with disability. Ex Aequo 2011; 23:67-81.^,3434 Chisale SS. "Disabled motherhood in an African community": towards an African women theology of disability. In Skriflig 2018; 52:1-9.^,4141 Dehays PM, Hichins AM, Vidal CV. Análisis del significado de las ocupaciones atribuidas a ser mujer y madre para mujeres con discapacidad intelectual en la cuidad de Punta Arenas. Rev Chil Ter Ocup 2012; 12:11-18.^,4343 Gesser M, Nuernberg AH, Toneli MJF. Constituindo-se sujeito na intersecção gênero e deficiência: relato de pesquisa. Psicol Estud 2013; 18(3):419429.^,4444 Nicolau SM, Schraiber LB, Ayres JR CM. Mulheres com deficiência e sua dupla vulnerabilidade: contribuições para a construção da integralidade em saúde. Cien Saude Colet 2013; 18(3):863-872.^,5757 Ganle JK, Apolot RR, Rugoho T, Sumankuuro J. "They are my future": childbearing desires and motivations among women with disabilities in Ghana - implications for reproductive healthcare. Reprod Health 2020; 17(1):151.^,5959 Ngwena CG. Reproductive autonomy of women and girls under the Convention on the Rights of Persons with Disabilities. Int J Gynaecol Obstet 2018; 140(1):128-133.^,6262 Ganle JK, Otupiri E, Obeng B, Edusie AK, Ankomah A, Adanu R. Challenges women with disability face in accessing and using maternal healthcare services in Ghana: a qualitative study. PLoS One 2016; 11(6):e0158361.^,6464 Lawler D, Begley C, Lalor J. (Re)constructing Myself: the process of transition to motherhood for women with a disability. J Adv Nurs 2015; 71(7):1672-1683.^,6868 Iezzoni LI, Wint AJ, Smeltzer SC, Ecker JL. "How did that happen?" Public responses to women with mobility disability during pregnancy. Disabil Health J 2015; 8(3):380-387.. Discrimination joins the stereotypes that disqualify those women for possibly performing such a role or their capacity to do so. Given this process, a need for a new ethic of care arises - interdependence in the negotiation of care, including the children themselves as peers¹⁷17 Clímaco JC. Análise das construções possíveis de maternidades nos estudos feministas e da deficiência. Rev Estud Fem 2020; 28(1):e54235.^,3232 Pinto PC. "The maternal is political": exploring mothering among women with disability. Ex Aequo 2011; 23:67-81.^,3333 Lima DS, Silva LR, Rocha CR, Teixeira SVB, Paiva MS. Care of wheelchair pregnant women in the light of Collière's theory. Rev Bras Enferm 2020; 73(4):e20180755.^,6262 Ganle JK, Otupiri E, Obeng B, Edusie AK, Ankomah A, Adanu R. Challenges women with disability face in accessing and using maternal healthcare services in Ghana: a qualitative study. PLoS One 2016; 11(6):e0158361.^,6464 Lawler D, Begley C, Lalor J. (Re)constructing Myself: the process of transition to motherhood for women with a disability. J Adv Nurs 2015; 71(7):1672-1683.^,7373 Shpigelman C-N. How to support the needs of mothers with physical disabilities? Disabil Rehabil 2015; 37(11):928-935.. We emphasize the importance of establishing parenting arrangements where diversity recognizes negotiated needs without resorting to mechanisms of infantilization, whether of women or children⁹¹91 Moreira MCN. Configurações do ativismo da parentalidade atípica na deficiência e cronicidade. Cien Saude Colet 2022; 27(10):3939-3948..

Based on the analytical summary of this first axis, we stress care as a human-interdependent relationship without the “overprotection” pitfalls, which removes the disabled woman from the center of the relationship. The transmutation of care into overprotection, shaping “enchanted circles of secrecy”⁸⁸88 Goffman E. Estigma: notas sobre a manipulação da identidade deteriorada. Rio de Janeiro: Livros Técnicos e Científicos; 1988. and restricting the sociability processes, is mediated by the symbols of stigma⁸⁸88 Goffman E. Estigma: notas sobre a manipulação da identidade deteriorada. Rio de Janeiro: Livros Técnicos e Científicos; 1988.. The need is paramount to break with these discriminatory, enabling, dehumanizing, and objectifying mechanisms of women with disabilities, who have become objects of desire for others.

We should not equate prejudice and discrimination and conceptualize stigma as a mark or set of marks of distinction. It may impact dehumanizing, depersonalizing, and objectifying women with disabilities.

Obstetric ableism: expression of obstetric violence

Ableism is as powerful as the racist, sexist, and classist structures fed by patriarchal logic dehumanizing black, peripheral, poor, and disabled women. This objectification fosters expressions of violence, which in childbirth scenes are translated as obstetric violence⁹²92 D'Oliveira AFPL, Diniz CSG, Schraiber LB. Violence against women in health care institutions: an emerging problem. Lancet 2002; 359(11):1681-1685.. Obstetric violence is an expression of gender violence, shedding light on the experiences of a woman when dealing with the institutions providing prenatal, childbirth, and postpartum care. Obstetric violence is based on power asymmetries and hierarchies of gender, class, race, and corporeality, bringing attitudes, practices, and procedures based on the dehumanization and objectification of women. This violence can be magnified if we intertwine gender, class, race, and disability.

Here, we use obstetric ableism as a double of obstetric violence against women with disabilities. It acquires political value in the same way as obstetric racism - the obstetric violence faced by black women in perinatal care⁹³93 Tempesta GA, Eneile M. Racismo obstétrico: a política racial da gravidez, do parto e do nascimento. Amazonica Rev Antropol 2021; 12(2):751-778.. Obstetric violence of an enabling nature is not an individual phenomenon but a long-term structure based on models of the body, norms of its presentation, and function. It is expressed in the carelessness that words, gestures, and glances reveal when ignoring or not welcoming the presence of women with disabilities in the care spaces for pregnant women³³33 Lima DS, Silva LR, Rocha CR, Teixeira SVB, Paiva MS. Care of wheelchair pregnant women in the light of Collière's theory. Rev Bras Enferm 2020; 73(4):e20180755.^,3535 Cruz Pérez MP. Mitos acerca de la maternidad en mujeres con discapacidad. Perinatol Reprod Hum 2014; 28:91-96.

36 Ballesteros Meseguer C, Marín NT, Martínez-Espejo MD, Pina Roche F. Percepción de la asistencia sanitaria al embarazo y parto en mujeres con discapacidad de la movilidad en la región de Murcia. Enferm Glob 2011;10(22):1-21.

37 Carvalho CFS, Brito RS. The support network in pregnancy and childbirth: the conceptions of women with physical disability. Texto Contexto Enferm 2016; 25(2):e0600015.

38 Santos RS, Ribeiro VM. Transition of blind women to motherhood from the perspective of Transitions Theory. Rev Bras Enferm 2020; 73(Suppl. 4):e20190234.^-3939 Santos LFM, Janini JP, Souza VM, Santos RS. Transition to motherhood and mothering for women in wheelchairs: a nursing perspective. Rev Bras Enferm 2019; 72(Suppl. 3):290-296.^,4242 Jones BS, Duarte BT, Astorga UN, Pardo M, Sepúlveda R. Aproximación a la experiencia de cuerpo y sexualidad de un grupo de mujeres chilenas con discapacidad física congénita. Rev Chil Ter Ocup 2015; 15:19-32.^,4444 Nicolau SM, Schraiber LB, Ayres JR CM. Mulheres com deficiência e sua dupla vulnerabilidade: contribuições para a construção da integralidade em saúde. Cien Saude Colet 2013; 18(3):863-872.^,4747 Alhusen JL, Bloom T, Anderson J, Hughes RB. Intimate partner violence, reproductive coercion, and unintended pregnancy in women with disabilities. Disabil Health J 2020; 13(2):100849.

48 Iezzoni LI, Wint AJ, Smeltzer SC, Ecker JL. Recommendations about pregnancy from women with mobility disability to their peers. Womens Health Issues 2017; 27(1):75-82.

49 Smeltzer SC, Wint AJ, Ecker JL, Iezzoni LI. Labor, delivery, and anesthesia experiences of women with physical disability. Birth 2017; 44(3):315-324.^-5050 Powell RM, Mitra M, Smeltzer SC, Long-Bellil LM, Smith LD, Iezzoni LI. Family attitudes and reactions toward pregnancy among women with physical disabilities. Womens Health Issues 2017; 27(3):345-350.^,5353 Kalpakjian CZ, Kreschmer JM, Slavin MD, Kisala PA, Quint EH, Chiaravalloti ND, Jenkins N, Bushnik T, Amtmann D, Tulsky DS, Madrid R, Parten R, Evitts M, Grawi CL. Reproductive health in women with physical disability: a conceptual framework for the development of new patient-reported outcome measures. J Womens Health (Larchmt) 2020; 29(11):1427-1436.

54 Rice JG, Bjargardóttir HB, Sigurjónsdóttir HB. Child protection, disability and obstetric violence: three case studies from Iceland. Int J Environ Res Public Health 2020; 18(1):158.^-5555 Mitra M, Long-Bellil LM, Iezzoni LI, Smeltzer SC, Smith LD. Pregnancy among women with physical disabilities: Unmet needs and recommendations on navigating pregnancy. Disabil Health J 2016; 9(3):457-463.^,5858 Streur CS, Schafer CL, Garcia VP, Quint EH, Sandberg DE, Kalpakjian CZ, Wittmann DA. "He told me it would be extremely selfish of me to even consider [having kids]": the importance of reproductive health to women with spina bifida and the lack of support from their providers. Disabil Health J 2020; 13(2):100815.^,6161 LaPierre TA, Zimmerman MK, Hall JP. "Paying the price to get there": Motherhood and the dynamics of pregnancy deliberations among women with disabilities. Disabil Health J 2017; 10(3):419-425.^,6262 Ganle JK, Otupiri E, Obeng B, Edusie AK, Ankomah A, Adanu R. Challenges women with disability face in accessing and using maternal healthcare services in Ghana: a qualitative study. PLoS One 2016; 11(6):e0158361.^,6464 Lawler D, Begley C, Lalor J. (Re)constructing Myself: the process of transition to motherhood for women with a disability. J Adv Nurs 2015; 71(7):1672-1683.

65 Mazurkiewicz B, Stefaniak M, Dmoch-Gajzlerska E. Perinatal care needs and expectations of women with low vision or total blindness in Warsaw, Poland. Disabil Health J 2018; 11(4):618-623.

66 Apolot RR, Ekirapa E, Waldman L, Morgan R, Aanyu C, Mutebi A, Nyachwo EB, Seruwagi G, Kiwanuka SN. Maternal and newborn health needs for women with walking disabilities; "the twists and turns": a case study in Kibuku District Uganda. Int J Equity Health 2019; 18(1):43.^-6767 Schildberger B, Zenzmaier C, König-Bachmann M. Experiences of Austrian mothers with mobility or sensory impairments during pregnancy, childbirth and the puerperium: a qualitative study. BMC Pregnancy Childbirth 2017; 17:201.^,6969 Long-Bellil L, Mitra M, Iezzoni LI, Smeltzer SC, Smith LD. Experiences and unmet needs of women with physical disabilities for pain relief during labor and delivery. Disabil Health J 2017; 10(3):440-444.^,7575 Bradbury-Jones C, Breckenridge JP, Devaney J, Kroll T, Lazenbatt A, Taylor J. Disabled women's experiences of accessing and utilising maternity services when they are affected by domestic abuse: a critical incident technique study. BMC Pregnancy Childbirth 2015; 15:181.^,7777 Malouf R, McLeish J, Ryan S, Gray R, Redshaw M. "We both just wanted to be normal parents": a qualitative study of the experience of maternity care for women with learning disability. BMJ Open 2017;7:e015526.^,7979 Bremer K, Cockburn L, Ruth A. Reproductive health experiences among women with physical disabilities in the Northwest Region of Cameroon. Int J Gynaecol Obstet 2010; 108(3):211-213.^,8181 Tarasoff LA. "We don't know. We've never had anybody like you before": Barriers to perinatal care for women with physical disabilities. Disabil Health J 2017; 10(3):426-433.

82 Tefera B, Van Engen M, Van der Klink J, Schippers A. The grace of motherhood: disabled women contending with societal denial of intimacy, pregnancy, and motherhood in Ethiopia. Disability Soc 2017; 32(10):1510-1533.^-8383 Mercerat C, Saïas T. The determinants of the relationship between parents with physical disabilities and perinatal services: a scoping review. Canadian J Disability Studies 2021; 10(1):100-129., including recommending abortion or sterilization when these women express interest or want information about their sexual and reproductive health³⁵35 Cruz Pérez MP. Mitos acerca de la maternidad en mujeres con discapacidad. Perinatol Reprod Hum 2014; 28:91-96.^,4545 Yupanqui-Concha A, Aranda-Farias C, Ferrer-Perez VA. Prácticas de salud de dominación y exclusión: visiones de activistas, profesionales e investigadoras sobre situación de esterilizaciones forzadas en mujeres y niñas con discapacidad en España. Saude Soc 2021; 30(1):e200107.^,5858 Streur CS, Schafer CL, Garcia VP, Quint EH, Sandberg DE, Kalpakjian CZ, Wittmann DA. "He told me it would be extremely selfish of me to even consider [having kids]": the importance of reproductive health to women with spina bifida and the lack of support from their providers. Disabil Health J 2020; 13(2):100815.. Obstetric ableism is reflected in the environmental barriers found in health services³⁶36 Ballesteros Meseguer C, Marín NT, Martínez-Espejo MD, Pina Roche F. Percepción de la asistencia sanitaria al embarazo y parto en mujeres con discapacidad de la movilidad en la región de Murcia. Enferm Glob 2011;10(22):1-21.^,5353 Kalpakjian CZ, Kreschmer JM, Slavin MD, Kisala PA, Quint EH, Chiaravalloti ND, Jenkins N, Bushnik T, Amtmann D, Tulsky DS, Madrid R, Parten R, Evitts M, Grawi CL. Reproductive health in women with physical disability: a conceptual framework for the development of new patient-reported outcome measures. J Womens Health (Larchmt) 2020; 29(11):1427-1436.^,6262 Ganle JK, Otupiri E, Obeng B, Edusie AK, Ankomah A, Adanu R. Challenges women with disability face in accessing and using maternal healthcare services in Ghana: a qualitative study. PLoS One 2016; 11(6):e0158361.^,6363 Walsh-Gallagher D, Mc Conkey R, Sinclair M, Clarke R. Normalising birth for women with a disability: the challenges facing practitioners. Midwifery 2013; 29:294-299.^,6666 Apolot RR, Ekirapa E, Waldman L, Morgan R, Aanyu C, Mutebi A, Nyachwo EB, Seruwagi G, Kiwanuka SN. Maternal and newborn health needs for women with walking disabilities; "the twists and turns": a case study in Kibuku District Uganda. Int J Equity Health 2019; 18(1):43.^,7474 König-Bachmann M, Zenzmaier C, Schildberger B. Health professionals' views on maternity care for women with physical disabilities: a qualitative study. BMC Health Serv Res 2019; 19:551.^,7676 Nguyen TV, King J, Edwards N, Dunne MP. "Under great anxiety": pregnancy experiences of Vietnamese women with physical disabilities seen through an intersectional lens. Soc Sci Med 2021; 284:114231.^,7878 Mitra M, Smith LD, Smeltzer SC, Long-Bellil LM, Sammet Moring N, Iezzoni LI. Barriers to providing maternity care to women with physical disabilities: perspectives from health care practitioners. Disabil Health J 2017; 10(3):445-550.

79 Bremer K, Cockburn L, Ruth A. Reproductive health experiences among women with physical disabilities in the Northwest Region of Cameroon. Int J Gynaecol Obstet 2010; 108(3):211-213.

80 Thomaz EBAF, Costa EM, Goiabeira YNLA, Rocha TAH, Rocha NCS, Marques MCO, Queiroz RCS. Accessibility to people with motor, visual, or hearing disabilities during delivery and childbirth: the structure of SUS facilities linked to Rede Cegonha. Cien Saude Colet 2021; 26(3):897-908.^-8181 Tarasoff LA. "We don't know. We've never had anybody like you before": Barriers to perinatal care for women with physical disabilities. Disabil Health J 2017; 10(3):426-433.^,8383 Mercerat C, Saïas T. The determinants of the relationship between parents with physical disabilities and perinatal services: a scoping review. Canadian J Disability Studies 2021; 10(1):100-129., in the denial of sexuality and, alongside this, the right to reproductive decisions tailored to the needs demanded by the diversity of expressions of disability⁴⁵45 Yupanqui-Concha A, Aranda-Farias C, Ferrer-Perez VA. Prácticas de salud de dominación y exclusión: visiones de activistas, profesionales e investigadoras sobre situación de esterilizaciones forzadas en mujeres y niñas con discapacidad en España. Saude Soc 2021; 30(1):e200107.^,4646 Araújo GMS, Aiello ALR. Rede social de apoio de mães com deficiência intelectual. Psicol Reflex Crit 2013; 26(4):752-761.^,4848 Iezzoni LI, Wint AJ, Smeltzer SC, Ecker JL. Recommendations about pregnancy from women with mobility disability to their peers. Womens Health Issues 2017; 27(1):75-82.^,5656 Walsh-Gallagher D, Sinclair M, Mc Conkey R. The ambiguity of disabled women's experiences of pregnancy, childbirth and motherhood: a phenomenological understanding. Midwifery 2012; 28(2):156-162.^,7979 Bremer K, Cockburn L, Ruth A. Reproductive health experiences among women with physical disabilities in the Northwest Region of Cameroon. Int J Gynaecol Obstet 2010; 108(3):211-213.^,8383 Mercerat C, Saïas T. The determinants of the relationship between parents with physical disabilities and perinatal services: a scoping review. Canadian J Disability Studies 2021; 10(1):100-129.. It often prevails a hegemonic view that the pregnancy of a woman with a disability characterizes an obstetric risk or is the result of sexual violence. In most cases, this view is not based on clinical evidence or rights, compromising humanized care, not assuring a companion at birth³⁷37 Carvalho CFS, Brito RS. The support network in pregnancy and childbirth: the conceptions of women with physical disability. Texto Contexto Enferm 2016; 25(2):e0600015., disrespecting the birth plan, and affecting cesarean rates⁴⁹49 Smeltzer SC, Wint AJ, Ecker JL, Iezzoni LI. Labor, delivery, and anesthesia experiences of women with physical disability. Birth 2017; 44(3):315-324.^,6969 Long-Bellil L, Mitra M, Iezzoni LI, Smeltzer SC, Smith LD. Experiences and unmet needs of women with physical disabilities for pain relief during labor and delivery. Disabil Health J 2017; 10(3):440-444..

Disability is seen as a flaw, a lack, or a defect that decharacterizes and undermines bodily impairment as a legitimate expression of a body that reorganizes itself in interactions with the world. As such, cultural representations of a disabled, pregnant woman denote a generation of disabled children, prospecting risky heredity and fear-provoking⁴²42 Jones BS, Duarte BT, Astorga UN, Pardo M, Sepúlveda R. Aproximación a la experiencia de cuerpo y sexualidad de un grupo de mujeres chilenas con discapacidad física congénita. Rev Chil Ter Ocup 2015; 15:19-32.^,5252 Devkota HR, Kett M, Groce N. Societal attitude and behaviours towards women with disabilities in rural Nepal: pregnancy, childbirth and motherhood. BMC Pregnancy Childbirth 2019; 19:20.. Empowering structures are intertwined with dangerous emotions, which evoke displeasure, fear and subjectivity based on suffering. They attribute women with disabilities to the inability to care for their children and exercise motherhood43,51. On this axis, it is worth mentioning the fear of threats of losing child custody by social workers acting as agents of biopolitical control of the State⁴⁶46 Araújo GMS, Aiello ALR. Rede social de apoio de mães com deficiência intelectual. Psicol Reflex Crit 2013; 26(4):752-761.^,4848 Iezzoni LI, Wint AJ, Smeltzer SC, Ecker JL. Recommendations about pregnancy from women with mobility disability to their peers. Womens Health Issues 2017; 27(1):75-82.^,5252 Devkota HR, Kett M, Groce N. Societal attitude and behaviours towards women with disabilities in rural Nepal: pregnancy, childbirth and motherhood. BMC Pregnancy Childbirth 2019; 19:20.^,5454 Rice JG, Bjargardóttir HB, Sigurjónsdóttir HB. Child protection, disability and obstetric violence: three case studies from Iceland. Int J Environ Res Public Health 2020; 18(1):158.^,5656 Walsh-Gallagher D, Sinclair M, Mc Conkey R. The ambiguity of disabled women's experiences of pregnancy, childbirth and motherhood: a phenomenological understanding. Midwifery 2012; 28(2):156-162..

Reproductive justice: politicizing motherhood and care

One of the articles states that motherhood is a political act³²32 Pinto PC. "The maternal is political": exploring mothering among women with disability. Ex Aequo 2011; 23:67-81.. Politicizing motherhood means denouncing the patriarchal structure that limits women to a private space, without rights and responsible only for looking after the home and children. In the articles, we found interesting accounts of the desire to become pregnant as an expression of claiming femininity, strength, a personal dream, ability, or even social confrontation to broaden the gaze of those close to her about her sexuality and condition as a being of desire³²32 Pinto PC. "The maternal is political": exploring mothering among women with disability. Ex Aequo 2011; 23:67-81.^,3838 Santos RS, Ribeiro VM. Transition of blind women to motherhood from the perspective of Transitions Theory. Rev Bras Enferm 2020; 73(Suppl. 4):e20190234.^,3939 Santos LFM, Janini JP, Souza VM, Santos RS. Transition to motherhood and mothering for women in wheelchairs: a nursing perspective. Rev Bras Enferm 2019; 72(Suppl. 3):290-296.^,4848 Iezzoni LI, Wint AJ, Smeltzer SC, Ecker JL. Recommendations about pregnancy from women with mobility disability to their peers. Womens Health Issues 2017; 27(1):75-82.^,5151 Litchman ML, Tran MJ, Dearden SE, Guo J-W, Simonsen SE, Clark L. What women with disabilities write in personal blogs about pregnancy and early motherhood: qualitative analysis of blogs. JMIR Pediatr Parent 2019; 2(1):e12355.^,5656 Walsh-Gallagher D, Sinclair M, Mc Conkey R. The ambiguity of disabled women's experiences of pregnancy, childbirth and motherhood: a phenomenological understanding. Midwifery 2012; 28(2):156-162.

57 Ganle JK, Apolot RR, Rugoho T, Sumankuuro J. "They are my future": childbearing desires and motivations among women with disabilities in Ghana - implications for reproductive healthcare. Reprod Health 2020; 17(1):151.^-5858 Streur CS, Schafer CL, Garcia VP, Quint EH, Sandberg DE, Kalpakjian CZ, Wittmann DA. "He told me it would be extremely selfish of me to even consider [having kids]": the importance of reproductive health to women with spina bifida and the lack of support from their providers. Disabil Health J 2020; 13(2):100815.^,6161 LaPierre TA, Zimmerman MK, Hall JP. "Paying the price to get there": Motherhood and the dynamics of pregnancy deliberations among women with disabilities. Disabil Health J 2017; 10(3):419-425.^,6464 Lawler D, Begley C, Lalor J. (Re)constructing Myself: the process of transition to motherhood for women with a disability. J Adv Nurs 2015; 71(7):1672-1683.^,7373 Shpigelman C-N. How to support the needs of mothers with physical disabilities? Disabil Rehabil 2015; 37(11):928-935.^,7575 Bradbury-Jones C, Breckenridge JP, Devaney J, Kroll T, Lazenbatt A, Taylor J. Disabled women's experiences of accessing and utilising maternity services when they are affected by domestic abuse: a critical incident technique study. BMC Pregnancy Childbirth 2015; 15:181.^,7676 Nguyen TV, King J, Edwards N, Dunne MP. "Under great anxiety": pregnancy experiences of Vietnamese women with physical disabilities seen through an intersectional lens. Soc Sci Med 2021; 284:114231..

At this point, we evoke the concept of Reproductive Justice⁹⁴94 Ross LJ. Reproductive justice as intersectional feminist activism. Souls 2017; 19(3):286-314. understood as a formulation - based on intersectional feminism of black American and Afro-Latin American women - where guaranteeing sexual and reproductive rights necessarily entails taking into account the inequality relations triggering oppression and denial of social and economic rights, making decisions and survival impossible for women, mainly black and poor women⁹⁵95 Brandão ER, Cabral CS. Justiça reprodutiva e gênero: desafios teórico-políticos acirrados pela pandemia de Covid-19 no Brasil. Interface (Botucatu) 2021; 25(Supl. 1):e200762..

Here, we elucidate the need for other practices and the production of knowledge in which women with disabilities and their struggles for rights become part of women’s care approaches. Therefore, it requires literacy on rights based on Disability Justice⁹⁶96 Mingus M. Changing the framework: disability justice [Internet]. 2011. [cited 2023 jan 10]. Available from: https://leavingevidence.wordpress.com/2011/02/12/changing-the-framework-disability-justice/
https://leavingevidence.wordpress.com/20... , shifting disability from a discriminatory view of a woman’s tragedy (as mentioned in the articles: the blind woman, the “wheelchair user”, the woman with intellectual disabilities, etc.) to an inclusive view of active, dialogical listening. In her blog, Mia Mingus reminds us that disability evokes neediness and sadness. As such, it is rejected as undesirable and depicted as a tragic event. This structure of thought nourishes discriminatory practices, which ground arguments based on a eugenic vision justifying the right to abort fetuses with disabilities. The author’s first-person writing defends accessibility as a tangible resistance to the isolation of people with disabilities. Accessibility as a right to interdependence. Her perspective aligns with the Ethics of Care as a critique of the neoliberal logic of the independence of bodies¹²12 Kittay EF. Dependency. In: Adams R, editor. Keywords for disability studies. USA: New York University Press; 2015. p. 54-58.. She proceeds to formulate the concept of accessibility as justice, requiring to cover class, language, childcare, and toilets not separated by gender. Mia Mingus underlines that accessibility should not be limited to logistics for people with disabilities but should move towards understanding and practicing accessibility as justice, not just inclusion or diversity.

Under Disability Justice, accessibility distances from the “we’re just like you” model of equality to a model of disability that embraces difference, confronts privilege, and challenges the allegedly “normal” on all fronts. The author does not defend swelling the ranks of the privileged but advocates dismantling the systems that anchor them. Therefore, the discussion set accessibility as a value without which justice cannot be reached, while it questions a society of inaccessibility, producing invisibility and consequent oppression of disabled people.

Confronting such oppressions in the care of women with disabilities urges building decisions on health, sexuality, and reproductive planning, unbuilding the practices of social integration - fueled by a view that discriminates between lines of care for women A or B, fostering exclusion. The logic of inclusion regards interaction, making disability a characteristic that needs to be made ordinary, not exceptional. The basis lies in looking at women’s needs as rights-based, accessible, and inclusive, where sexuality, reproductive planning, and justice are socially legitimized.

We found a gap in the articles regarding recognizing sexual and reproductive rights as human rights for women with disabilities. This absence may indicate an open agenda for new research to promote inclusive policies and practices. To do so, it would be favorable to apply the references of Disability Justice embedded in the framework of Reproductive Justice. Some articles refer to sexual and reproductive rights¹⁸18 Belo LCO, Filho PO. Maternidade marcada: o estigma de ser mãe com deficiência visual. Saude Soc 2018; 27(3):957-967.^,3535 Cruz Pérez MP. Mitos acerca de la maternidad en mujeres con discapacidad. Perinatol Reprod Hum 2014; 28:91-96.^,4040 Santos RS, Ribeiro VM. A maternidade de mulheres cegas: possíveis contribuições de enfermagem. Rev Enferm UERJ 2018; 26:e32355-e32355.^,4141 Dehays PM, Hichins AM, Vidal CV. Análisis del significado de las ocupaciones atribuidas a ser mujer y madre para mujeres con discapacidad intelectual en la cuidad de Punta Arenas. Rev Chil Ter Ocup 2012; 12:11-18.^,4343 Gesser M, Nuernberg AH, Toneli MJF. Constituindo-se sujeito na intersecção gênero e deficiência: relato de pesquisa. Psicol Estud 2013; 18(3):419429.

44 Nicolau SM, Schraiber LB, Ayres JR CM. Mulheres com deficiência e sua dupla vulnerabilidade: contribuições para a construção da integralidade em saúde. Cien Saude Colet 2013; 18(3):863-872.^-4545 Yupanqui-Concha A, Aranda-Farias C, Ferrer-Perez VA. Prácticas de salud de dominación y exclusión: visiones de activistas, profesionales e investigadoras sobre situación de esterilizaciones forzadas en mujeres y niñas con discapacidad en España. Saude Soc 2021; 30(1):e200107.^,4747 Alhusen JL, Bloom T, Anderson J, Hughes RB. Intimate partner violence, reproductive coercion, and unintended pregnancy in women with disabilities. Disabil Health J 2020; 13(2):100849.^,5353 Kalpakjian CZ, Kreschmer JM, Slavin MD, Kisala PA, Quint EH, Chiaravalloti ND, Jenkins N, Bushnik T, Amtmann D, Tulsky DS, Madrid R, Parten R, Evitts M, Grawi CL. Reproductive health in women with physical disability: a conceptual framework for the development of new patient-reported outcome measures. J Womens Health (Larchmt) 2020; 29(11):1427-1436.^,5555 Mitra M, Long-Bellil LM, Iezzoni LI, Smeltzer SC, Smith LD. Pregnancy among women with physical disabilities: Unmet needs and recommendations on navigating pregnancy. Disabil Health J 2016; 9(3):457-463.^,5757 Ganle JK, Apolot RR, Rugoho T, Sumankuuro J. "They are my future": childbearing desires and motivations among women with disabilities in Ghana - implications for reproductive healthcare. Reprod Health 2020; 17(1):151.^,6767 Schildberger B, Zenzmaier C, König-Bachmann M. Experiences of Austrian mothers with mobility or sensory impairments during pregnancy, childbirth and the puerperium: a qualitative study. BMC Pregnancy Childbirth 2017; 17:201.. Although professionals are concerned about providing adequate care⁶³63 Walsh-Gallagher D, Mc Conkey R, Sinclair M, Clarke R. Normalising birth for women with a disability: the challenges facing practitioners. Midwifery 2013; 29:294-299.^,7272 Smeltzer SC, Mitra M, Long-Bellil L, Iezzoni LI, Smith LD. Obstetric clinicians' experiences and educational preparation for caring for pregnant women with physical disabilities: a qualitative study. Disabil Health J 2018; 11(1):8-13.^,7474 König-Bachmann M, Zenzmaier C, Schildberger B. Health professionals' views on maternity care for women with physical disabilities: a qualitative study. BMC Health Serv Res 2019; 19:551.^,7878 Mitra M, Smith LD, Smeltzer SC, Long-Bellil LM, Sammet Moring N, Iezzoni LI. Barriers to providing maternity care to women with physical disabilities: perspectives from health care practitioners. Disabil Health J 2017; 10(3):445-550., they emphasize that they lack “training” for the delivery of a woman with a disability. It becomes relevant to build inclusive practices that assure accessibility and tackle physical, communicative, and informational barriers accessible to the needs of women with disabilities, unbuilding the ableism that feeds attitudinal barriers. The issue is not providing “training” on new practices but addressing the dehumanizing logic of women with disabilities. Other means of communication become necessary for informed decisions and acceptance. Many women regretted having their home births or births with midwives rejected because they fell into the high-risk group⁴⁹49 Smeltzer SC, Wint AJ, Ecker JL, Iezzoni LI. Labor, delivery, and anesthesia experiences of women with physical disability. Birth 2017; 44(3):315-324.^,5858 Streur CS, Schafer CL, Garcia VP, Quint EH, Sandberg DE, Kalpakjian CZ, Wittmann DA. "He told me it would be extremely selfish of me to even consider [having kids]": the importance of reproductive health to women with spina bifida and the lack of support from their providers. Disabil Health J 2020; 13(2):100815.^,6969 Long-Bellil L, Mitra M, Iezzoni LI, Smeltzer SC, Smith LD. Experiences and unmet needs of women with physical disabilities for pain relief during labor and delivery. Disabil Health J 2017; 10(3):440-444.. However, the bodily impairments did not imply any obstetric risk for these women.

The phrase “occupational injustice” is associated with financial difficulties in arranging and planning family care⁴¹41 Dehays PM, Hichins AM, Vidal CV. Análisis del significado de las ocupaciones atribuidas a ser mujer y madre para mujeres con discapacidad intelectual en la cuidad de Punta Arenas. Rev Chil Ter Ocup 2012; 12:11-18. for women with intellectual disabilities and is not exclusive⁵¹51 Litchman ML, Tran MJ, Dearden SE, Guo J-W, Simonsen SE, Clark L. What women with disabilities write in personal blogs about pregnancy and early motherhood: qualitative analysis of blogs. JMIR Pediatr Parent 2019; 2(1):e12355.^,5757 Ganle JK, Apolot RR, Rugoho T, Sumankuuro J. "They are my future": childbearing desires and motivations among women with disabilities in Ghana - implications for reproductive healthcare. Reprod Health 2020; 17(1):151..

Final considerations

This review has also allowed us to recognize that the maternity of women with disabilities demands political strategies to be acknowledged in terms of rights. To that end, we highlight: (1) the family and close relationships do not necessarily guarantee security and acceptance for women with disabilities in their sexual and reproductive lives. This is the first locus of infantilization as a process to be unbuilt by health services from adolescence onwards; (2) beyond opposing obstetric violence as an expression against black women, we need to confront what we call obstetric ableism aimed at women with disabilities; (3) In theory, to challenge of addressing stereotypes against the maternity of women with disabilities and their sexual and reproductive rights lies in tackling ableist vocabulary and practices, deepening the principles of Reproductive Justice with a disability Justice.

References

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