Agnieszka Król (firstname.lastname@example.org)
Jagiellonian University, Poland
The transition to parenthood remains one of major life transitions. As such, it has received a lot of scholarly attention. The sociological perspective allows us to see that the decision-making processes around family planning and the transition to parenthood itself are embedded in social context, i.e. practices and values. In Poland, the 2016 Women Strike demonstrated that the women’s decision on if and when to have children continues to be a point of contention in the society (see Król and Pustułka 2018). However, if we were to look at the reproduction-related decision-making processes through intersectional lenses, we could easily notice that not all women are subjected to the same problematisation. While most women in reproductive age are experiencing societal pressure to become mothers and are reporting deprivation of reproductive autonomy, women with disabilities are discouraged, coerced or simply not supported in having children. The situation of women with disabilities in the reproductive realm, transition to parenthood and doing family became the focus of my recent study.
In my research, I attempt to understand lived experiences of women with disabilities regarding motherhood and reproductive autonomy. My aim is to explore the realities of women with physical and sensory disabilities in order to understand how they navigate parenthood; relate to concepts such as care and interdependency and how they create networks of support. I have decided to study the experiences of both mothers and women who do not have children as I believed it would give me an insight into the full spectrum of dilemmas with regards to transition to parenthood.
Coined by the SisterSong Collective within the Black feminist movement in the USA, the concept of reproductive justice (RJ) turned to be a very suitable and fruitful framework for the analysis of disabled women’s experiences in Central Eastern Europe context. The RJ approach emerged as a response to the limited understanding of reproduction and population control as a matter of individual choice, that excludes the interdependency, sociohistorical factors and intersectionality. RJ focuses on how the ability of a woman to determine her own reproductive autonomy is related to the conditions in the community she lives in. Thus, RJ links reproductive with citizenship issues. The above-mentioned conditions are informed by the social construction of who and why can reproduce and who decides upon that. Moreover, they are strongly influenced intersectionally by concepts of, among others, race, ethnicity, religion, class, sexual orientation, gender identity or disability. Hence, the RJ approach challenges the traditional notion of women’s choice and shows the complexity of reproductive autonomy as such (see Ross and Solinger 2017; Joffe and Reich 2014). Importantly, the RJ perspective goes beyond abortion debate and sheds light on questions regarding having children, not having children as well as support in upbringing children. This categorisation allows us to see the diverse dimensions of disabled women’s transition to parenthood.
Contrary to other women’s meaningful and relevant claims around contraception and abortion access, women with disabilities primarily focus on the possibility to have children (although the issues of access are also relevant for disabled women). This is not surprising if we consider the fact that they are subjected to the legacy of eugenics, discriminatory laws (e.g. restrictions in marriage and adoption laws), economic inequalities and other ableist processes that lead to body disownment and violence. Moreover, in many countries, human rights advocates continue to report enforced or coerced sterilizations and abortions (tackling mainly woman with intellectual disabilities). This is even the case in such contexts as the Polish one, where such procedures are legally restricted. In Poland, as in multiple other regions, when women with disabilities request birth control and family planning consultancy, they report limited access to gynaecologist due to inaccessibility of services and prejudices they encounter when talking about sexual life or family planning. Professionals would often refrain from giving the information on reproductive health, and it is often hard to find a gynaecologist who would specialise in the woman’s disability and would be willing to oversee the pregnancy or prescribe contraceptives. For these reasons, women with disabilities create grassroots networks outside of medical contexts where they share knowledge on reproduction control, pregnancy, and dosing.
Disabled women are discouraged from parenthood often through silencing topics related to sexuality and microaggressions: short, subtle, disrespectful interactions that express the hegemonic views. Such interactions occur with high frequency at verbal, behavioral or community level. Some of the women who took part in my study claimed they have never had an opportunity to talk about parenthood and sexuality in the communities they live in (families, peers, schools, institutions). Those who had these discussions claimed that deciding upon having children when being a woman with disability is predominantly framed in moral terms, presenting disabled mothers as heroines or questioning their decisions.
A generalised notion that women with disabilities are childless hinders the understanding of why a significant number of them do not have children. In my study I report various reflexive decision-making processes that go beyond widespread nation that women with disabilities are unable to bring up children. Participants of the study elaborated on diverse reasons for remaining childfree, including, among others, embodiment issues (e.g. considering their disabilities as limiting parenthood, anxieties surrounding the heredity of disability), ableism (e.g. the experiences of discrimination and the belief that their child should not go through the same process because of their or their parent’s disability), gender regimes (e.g. partner unwilling to be involved in care work), work-life balance (e.g. unwillingness to give up their career resulting from the conviction that childcare for a mother with disability takes up more time), economic inequalities (e.g. unfavourable situation on the labour market). By expressing their thoughts on remaining childfree, women with disabilities challenge the prevailing perception of not having children as an obvious state and display their agency in the hostile circumstances.
Notwithstanding, in Poland, as of 2011, an estimated 345 thousand disabled persons were raising children under 18 years old (Wiszejko-Wierzbicka, Racław, Wołowicz-Ruszkowska 2018). The analysed narratives have shown their constant navigation between high motivation to raise their children in the best possible manner, ableist realities, diverse embodiment, and economic inequalities. For instance, mothers must deal with inaccessible childcare facilities that hinder their involvement in parenting practices (by suggesting accessible spaces for children birthday parties, organising care for children when the provision of accessibility is impossible, adapting home environments to ensure safety and accessibility). Contrary to Western countries, Poland does not guarantee country-wide personal assistance (PA) services. Hence, solutions provided by welfare systems are limited. The participants highlighted that the very awareness of having such services available on demand would significantly change their approach to sexuality, reproduction, and family by reducing the fear of being left alone.
Currently, all the support is channelled within the family structures. Most of the disabled mothers I have interviewed have constructed their parenting based on interdependence and mutual care, thus challenging the dominant, individualised parenting models (see Wołowicz-Ruszkowska 2015). This translated into well-balanced parenting roles within couples, including practices of caring masculinities and fathers extensively engaging in care work (contrary to most of the Polish families where mothers fulfil most of the family duties). When fathers were absent the “mother behind mother” model was predominant, which meant that grandmothers played a crucial role in child upbringing (see Traustadottir and Sigurjonsdottir 2008). Those models created certain tensions in the construction of mother’s identity, as interviewees reported difficulties in navigating their control over everyday practices, especially in formal situations where parent’s able-bodiedness is assumed e.g. consultations with paediatricians. Despite rich evidence of extended family and other networks supporting disabled mothers in their everyday life (e.g. neighbours walking kids every second day to school), there is a need for a comprehensive system. In spite of this necessity, and in line with the results of research carried out in other geographical contexts, the participants expressed concerns about being over-scrutinised and feared custody removal because of their disability. Their concerns are legitimised, as demonstrated by the most extreme case identified in the research where the police intervened at home of a woman with cerebral palsy after she came back home with her new-born daughter. No other reason for the intervention was communicated to her. The case exemplifies what researchers have identified in many contexts: the fact that the need for support often is transformed into surveillance practices either by family or by the state.
Social discourses on reproduction (law, social and cultural norms, history) influence the lived experiences of disabled women. They construct the “architecture of choices” on the horizon of reproductive justice, which differs significantly due to ableism and disabled embodiment. In other words, politics of ableism creates reproductive health care inequality. In the country where reproductive autonomy continues to be problematic for most of the women, the position of women with disabilities is contradictory. When they plan to have children, they experience questioning their transition to parenthood, when remaining childless they experience limitations in informed decision-making. In my opinion, reproductive justice lens allows for complex analysis of disabled women’s transition to parenthood, reproductive autonomy and doing family. We can frame the agency of women with disabilities, who undertake complex negotiations and engage in resistance practices to exercise their reproductive autonomy, in the context that creates exclusive norms on who can be a parent and who decides on that. Further research on this issue would allow us to improve our understanding of the processes of social reproduction as well as the role of everyday resistance practices undertaken by disabled women.