2021, 36(2), 1-12 INTERNATIONAL JOURNAL of SPECIAL EDUCATION Experiences of Mothers Who Care for Adults with Profound Intellectual Disabilities. Qualitative Study Diana Aksamit1 and Maria del Mar Badia Martin2 The Maria Grzegorzewska University, Poland 1 2 Universitat Autònoma de Barcelona, Spain HOW TO CITE: ABSTRACT: Aksamit, D., Mar Badia Martin, M. (2021). The purpose of this qualitative study was to evaluate the motherhood expe- Experiences of Mothers Who Care rience when caring for adult children with profound intellectual disabilities. for Adults with Profound Intellectual The study was conducted in Poland with a group of 34 mothers. Data was Disabilities. Qualitative Study. collected and the qualitative methodology was applied, using in-depth nar- International Journal rative interviews. The results of the research indicated that these experiences of Special Education, 36(2), 1-12 also include various critical events; experiences that became part of the moth- CORRESPONDING AUTHOR: erhood to which the women attributed personal meaning. The study results Diana Aksamit; suggest the need for state reform measures to support mothers of adults with daksamit@aps.edu.pl profound intellectual disabilities and at the same time, for many families. DOI: https://doi.org/10.52291/ijse.2021.36.13 COPYRIGHT STATEMENT: Copyright: © 2021 Authors. Open access publication under the terms and conditions of the Creative Commons Attribution (CC BY) license (http://creativecommons. Keywords: motherhood; family; profound intellectual disability; adulthood. org/licenses/by/4.0/). www.internationalsped.com 1 Experiences of Mothers Who Care for Adults with Profound Intellectual Disabilities... IJSE 2021, 36(2), 1-12 INTRODUCTION had the right to say no and did not have to do or be what others wanted (2012). As the years passed, research was The motherhood of a child with a disability is an area showing the potential of women to achieve being able to of research interest in Poland (Budrowska, 2001; Kar- cope with a myriad of roles, not only as mothers but also wowska, 2007) and abroad (Al-Kuwari, 2007; Jordan as employees or managers (Keleher & Franklin, 2007; & Linden, 2013). Mothering an adult with profound Kinser, 2010), and it began to suggest that the archetype intellectual disabilities is, however, infrequently studied of the Polish mother had become an inappropriate mod- in Poland (Aksamit, 2019; Obuchowska, 2008), and el in the current Polish social and cultural environment worldwide (Gauthier-Boudreault et al., 2017; Redmond (Hryciuk & Korolczuk, 2012). Nowadays, however, in & Richardson, 2003). This is in part due to the small a world striving for democracy and gender equality, the number of people with profound intellectual disabilities historic Polish mother figure should be redefined, taking worldwide who make up only 5% of all people with in- into account new social conditions, and changing cultur- tellectual disabilities (Arvio & Sillanpää, 2003). Another al contexts. reason is that motherhood is a particularly challenging, personal, and intimate experience that mothers do not Motherhood Among Women Raising an Adult Child always want to share with a stranger or with a researcher. with Profound Intellectual Disability The situation of mothers of children with profound intel- lectual disabilities requires them to devote a lot of time, Due to the lack of specialised daycare facilities and energy, physical and mental strength to the entire process permanent residence facilities for the group of people of raising children. This is often related to the fact that with disabilities, and especially for adults in Poland, they cannot take up employment, which is due to their women are still with the responsibility of providing a child’s illness and the need to look after the child (Zhu, home for adults with profound intellectual disabilities 2016). This applies to areas of life such as professional over the age of 25 (the age limit for social service sys- activity, hobbies, investing in personal appearance, sex- tem activities for people with PIMD). There are too few uality, using the services of various educational and care education and rehabilitation centres offering support for institutions (Luijkx et al., 2017; Mencap, 2001). people with PIMD and thus for their carers (Aksamit, The roles and responsibilities of fathers and moth- 2019). It should be noted that in smaller towns or vil- ers are distinct in Poland (Imbierowicz, 2012; Titkow, lages, such support does not exist at all. In Poland, many 2012). In social terms, men have a lot of freedom in ful- mothers of adults with profound intellectual disabilities filling the paternal role as compared to mothers. Women are still deprived of formal support from the State for are required to sacrifice themselves, putting their children themselves and their children. This also applies to the above their life plans. This is the result of the tradition- area of understanding and supporting motherhood as a al, conservative Polish model of motherhood (Titkow, social and individual construct. Despite many changes in 2007). The image of femininity, rooted in Polish culture, the understanding of motherhood (Wallbank, 2018) and has lived by this model. For years it has been an imposed femininity in the last 30 years in Poland, these changes way of self-identification of women - motherhood is the do not apply to mothers of adults with profound intellec- centre of femininity. This model has determined the psy- tual disabilities (Aksamit, 2019). chological way of defining the “self ” by drawing a clear There are efforts to create a civil society in Poland, allocation of household duties as a woman; a nurse, the but there are still tendencies to reduce selected groups guardian of the hearth, versus the man in the role of one of women to gender stereotypes (Titkow et al., 2004) who works and earns, goes out to people and represents - which, in the case of women with children with pro- the family (Hryciuk & Korolczuk, 2012). After 2002, in found disabilities, intensifies with the child’s age (Chen Poland, the phrase: “assertive woman” appeared, which et al., 2001; Ferguson et al., 1988). There are social wel- partially changed the cultural image of the Polish mother fare institutions in Poland that, according to legal pro- (Titkow, 2012). Women began to recognise their right to visions, are supposed to support people with disabilities self-determination and fight for it. They challenged the and their families, but they are not always available in beliefs underlying the historic figure of the Polish mother. practical terms to adults with profound intellectual dis- They understand that, without her dedication, her family abilities and their carers. Social welfare institutions for would not have made it; that she carries a lot of weight people with disabilities are not widely available, and no on her shoulders. Mothers began to understand that they mechanism automatically triggers the reaction of these Doi: https://doi.org/10.52291/ijse.2021.36.13 2 Diana Aksamit and Maria del Mar Badia Martin IJSE 2021, 36(2), 1-12 institutions if a person is in trouble. Potential recipients the study and was informed that she was free to withdraw must actively ask for and seek support, and the state ap- from the study at any time. A convenient time and place pears unwilling to meet the need. Although according to for the interview were agreed upon. Mothers who were the authorities, many institutions are obliged to provide interviewed were between 55 and 78 years of age. Most support, there is no mechanism to effectively control and (n=30 out of n=34) were single, while (n=4) were mar- evaluate this assistance. Mothers of adults with profound ried and shared childcare duties with their husbands. The intellectual disabilities are advocates for their children, majority of women (n=22 out of n=34) had secondary but to receive the support they need, many conditions education, and (n=12) women had attended higher ed- must first be met. These include not being professionally ucation. Most mothers (n=27) were not working profes- active; having housing conditions as required in the laws sionally (n=21) and did not undertake any professional and regulations to receive social welfare benefits; timely activity after the child’s birth, (n=6 tried to combine a submission of properly completed forms. Exceeding the professional career with childcare but after a number of monthly income limit may deprive the family of the ben- difficult situations abandoned that effort). The women efit entitlement, which is a certain and permanent source were from different regions of Poland, including urban of income and, thus, critically important. Women, as (n=17), small towns (n=10), and rural settings (n=7). such, do not want to take the risk of seeking a job be- cause they may lose their benefits. These income-limited Procedure requirements force mothers to choose a lower social and Our task was to get to know and understand their moth- economic status because they want to maintain the finan- erhood experience and the meanings given to it. This cial certainty and continuity that allows them and their approach is related to phenomenology and its creator, children, often adults, to survive. All these issues also Edmund Husserl, introduced the notion of (Latin) ep- influence the meaning that women give to their moth- och. As understood by the author, it is a departure from erhood and themselves as women, mothers, daughters, judgments or evaluations. This approach requires the re- friends, and other individual roles (Mencap, 2001). searcher to abandon the natural attitude, transcenden- The purpose of this study was to describe, using a tal reduction (Råheim et al., 2016). In phenomenology, biographical method within the context of qualitative reflection is paramount. The researcher sets himself the research, various aspects of motherhood for mothers of task of reconstructing the experiences of the individual adults with profound intellectual disabilities. The inter- understudy through the use of reflection. Here, we have views were conducted using a theoretical-methodolog- a transition from theoretical reality to everyday reality ical approach developed in Fritz Schütze’s biographical until the researcher’s reflection on his or her life occurs. sociology (1977, 2012). Respondents were asked the The nature of the study required direct contact with the question: “How does it feel to be the mother of an adult respondents and involvement in the interview. with a profound intellectual disability?” The experiences Recruitment: Fifteen of the mothers were informed of these women (i.e., their past, present and expectations, about the research by their service provider (i.e.: munic- and thoughts about the future - all in a biographical ipal social service employees, doctors, or nurses). Some sense) were examined. adults with profound intellectual disabilities, after com- pleting their education, were offered a place in a daycare METHODS centre and their mothers were informed by trainers, ther- apists, and psychologists providing various therapy-relat- Participants ed supports. The other ten mothers were recruited using There were 34 interviews conducted with mothers caring the snowball sampling method (Emmel, 2013; Rubin & for adults with profound intellectual disabilities from all Babbie, 2010). parts of Poland. The criterion for selecting respondents Interviews: The study was conducted in Poland from was the legal situation of the child (certificate of degree of October 2016 to January 2018 in Polish. Most of the dependence and previous certificates on the need for edu- interviews (n=29) took place in the interviewees’ homes, cation and rehabilitation activities in which the profound others (n=5) occurred at places and times designated by degree of intellectual disability was indicated); age (25 the participant. Before an interview, each interviewee was years of age); and education (completed broadly defined informed that she was free to interrupt the interview at education provided by the Ministry of National Educa- any time, though none of them did so. The interviews tion). Every interviewee signed consent to participate in lasted from 90 to 240 minutes. A narrative interview www.internationalsped.com 3 Experiences of Mothers Who Care for Adults with Profound Intellectual Disabilities... IJSE 2021, 36(2), 1-12 process was used (Schütze, 2012), which is similar to an data (O’Reilly & Parker, 2013). Therefore, multiple cred- in‐depth, free conversation and consisted of three parts: ibility checks were performed to assess the thoroughness 1. The main phase of the narrative - presenting the of the interviews to safeguard and ensure that the data research purpose to a respondent and discussing eth- was reliable. The reliability and accuracy of the data were ical issues (e.g., that information from the research assured by: is anonymous and confidential, and that results will 1. Continuous comparison of the cases studied. This be used only for scientific purposes). At that point, methodological procedure allowed the conclusion one key question was asked: “What is it like to be a that the examined category was saturated - there was mother?” a moment when the next interview did not bring any- 2. The next phase of questioning was aimed at asking thing new to the study (Dwyer & Buckle, 2002). This about topics which the researchers wanted to develop. marked the end of the study. There were also questions relevant from the perspec- 2. Applying the principle of in-depth analysis of each tive of the research assumptions, which were not ad- word - the recordings were studied several times and dressed by the women. In this section, the researchers the answers were juxtaposed many times. The credi- were tasked with arranging the story chronologically. bility of the data was ensured by transcribing the re- The respondent was asked to complete the unclear cordings, which is especially important. parts, add missing phases, or solve contradictions. 3. Authorisation of the interview by interviewee; the 3. Balancing phase: The narrator’s comments on the respondents were asked to verify the truthfulness of interview (Hermanns, 1987; Prawda, 1989). The the recorded reflections (O’Brien et al., 2014). Each researchers’ task was to ensure that women talked of the interviewees agreed with our interpretation of about their individual experiences and not in general. the data, that it was not an over-interpretation, and The interviews were recorded using a voice recorder, that it represented authentic patterns of the mother- transcribed, repeatedly listened to, and continuously hood experience by Polish women raising adults with juxtaposed. The interview data was encoded using At- profound intellectual disabilities. las-ti (version 8), a qualitative data analysis software package. Each interviewee was given a fictitious name RESULTS to maintain personal data confidentiality. Analysing the interviews, an attempt was made to The Application of Theoretical-Methodological Con- understand the multidimensional experience of the in- cepts in the Research on Motherhood terviewees. To illustrate the subjective meaning the re- Fritz Schütze’s theory and methodological approach spondents gave to their motherhood, the results of the (1977, 2012) created a theoretical framework and al- analysis of the interview data were divided into two lowed for the study of motherhood from a biographical main emergent themes: effects of cultural background perspective: past – present – future. This made it possi- and traditions and social system inadequacy to meet the ble to understand the subjective experience of the phe- needs of a mother raising a child, adolescent, or adult nomenon being studied. Narrative interview styles may with profound intellectual disabilities. Mothers of adults yield material that allows to reconstruct the pattern of with profound intellectual disabilities illustrated a variant individual biographical experiences and to discover the model of motherhood in Poland. On the one hand, this basic structures of the process of biographical experience, model fits into the cultural figure of the Polish mother corresponding to the variants of the narrator’s attitude (a woman eager to sacrifice a lot), a heroic woman; but towards the phases of her life (Barthes, 2004). A meth- on the other hand, it is a model of a heroine who breaks od of continuous comparison has been used to anal- cultural and social stereotypes. yse the data, looking for another participant’s narrative that would enable questions to be answered (Charmaz, The Effects of Cultural Background in the Context of 2006). Comparing fragments of interviews repeatedly the Meanings Ascribed to Motherhood made it possible to conclude that the category was satu- Respondents pointed to various cultural factors and tra- rated (i.e., there was a moment when the next interview ditions that were imposed on the role of the mother of a did not bring anything new to the research) (Auerbach person with profound intellectual disabilities. They em- & Silverstein, 2003). Qualitative research needs to be de- phasised that, in Polish society, giving birth to a child signed to ensure objectivity, accuracy, and reliability of with disabilities means that a woman must sacrifice re- Doi: https://doi.org/10.52291/ijse.2021.36.13 4 Diana Aksamit and Maria del Mar Badia Martin IJSE 2021, 36(2), 1-12 gardless of the individual needs of the mother. Reference hunched and I still can’t ask for help, because we, moth- to the mother figure in traditional Polish culture was ers of children with disabilities, have already been as- present in most interviews. The women pointed to the signed this task. I pray that someone will finally oppose difficulties that made it impossible for them to meet this it. [Malwina] model for many years. They pointed out that they had to negotiate their social position not only as mothers but The interviewees pointed out that in various institu- also as women. Planning a public space should consider tions providing social services in the broadest sense of the needs of all users. the word, they were treated as mothers of “eternal chil- Mother: People don’t understand that I need an ordi- dren”, “little children” regardless of the age of their chil- nary conversation and not repeating questions about how dren (Heller et al., 1997). Many of them said that none Janek is doing, how I’m doing. I am sorry but when is of the institutional decision-makers noticed that, due to someone going to ask how I am feeling? I didn’t want their age and the age of their children, they were unable and don’t want any closer contacts: “good morning” and to meet the administrative requirements in dealing with “goodbye”, sometimes to talk for a while. [Hanna] formalities due to architectural barriers for wheelchair mobility (e.g., curbs, stairs, no lifts) and rigidly imposed Mother: None of us need mercy. Maybe in the past but business hours. They also remembered situations in not now. A mother like me only needs understanding, which officials allowed them to express negative opinions normality. A long time ago I stopped trying to make about the organisation with regards to time and ways of someone like me, to make someone accept my child. For- dealing with various matters by mothers. get it, I won’t ask anymore. [Jadwiga] Mother: “Come tomorrow at eight o’clock”, “go there”, and no one had a reflection that I was in a wheelchair The age of the respondents was one of the main factors with Błażej in it, he was 14 years old. But nothing has why the interlocutors were unable to cope with the cul- changed. Today I am 70 years old, and I hear again: “Do tural requirements of mothers. As they were aging, these this, do that”. Now the situation is different because I mothers noticed that their motherhood was a different start yelling, recording, threatening that I will come back model from the one they had commonly known and ac- with journalists. [Patrycja] cepted; from the model, they had been trying to meet for years. The traditional model of motherhood, care, and Mother: Once they told me to go up to the third floor. So, nursing (i.e., carrying, feeding, etc.), are associated with I left my daughter and said that if she starts screaming, mothering a small child. It was different for our respon- please let her drink and be careful because she can bite. dents. As the mothers and their children grew older, there The lady looked at me and said, “but take your child were more caring and nursing activities for children, and with you, please.” So, I said: “Please help me to bring the they required more mental and physical effort from the wheelchair, just be careful and protect your spine because aging woman. Confirmation of these observations can be it weighs 120 kilograms”. And the situation took a differ- found in other studies in this area (Caples & Sweeney, ent pace. She went there and arranged it herself and now 2010; Yoong & Koritsas, 2012). everyone knows me there. [Julia] Mother: Believe me, I do not have the strength to carry him every day. Sometimes I can’t lift him from his wheel- With age, it became more and more difficult for chair, sometimes I just pull him through the room. When women to take care of a person with a profound intel- I was younger, I used to carry my son even up the stairs, lectual disability. It was dictated, on the one hand, by I devoted myself entirely; today I am 78 years old, and I the fact that caring for an adult person requires a greater can’t. In the back of my mind, I always had the idea that expenditure of physical effort: lifting, carrying. On the I should be the best mother; today I blame myself, I have other hand, the age of the mothers meant that they did no strength. [Angelika] not have so much physical strength, they were sick and required care. It is a reality and the image of women is Mother: The reality I had to face required a lot of sac- still unknown in Polish society. rifices. Everyone said it would be inappropriate. I was ashamed to ask for help because somebody stuck it in my Fulfilling the Role of the Mother head that it was my child and my business, that since Motherhood understood as a social role incorporates a I am a mother, I have to deal with it. Yes!!! Today I’m set of expectations concerning the mother’s behaviour www.internationalsped.com 5 Experiences of Mothers Who Care for Adults with Profound Intellectual Disabilities... IJSE 2021, 36(2), 1-12 towards her child, her immediate family, and society Mothers started to come out of the shadows. I will tell you (Eisenhower & Blacher, 2006). The interviewees point- this: many of us will cry a lot and a long time will pass ed out that they were constantly haunted by social ex- before someone starts seeing not only mothers but also the pectations towards their role as mothers and towards the women in us. [Zuzanna] functioning of their children. Mothers pointed out that the social position of mothers of children with profound The respondents often admitted they felt sorry that intellectual disabilities in Poland is changing very slowly. their lives looked different than they had imagined. This In their opinion, little has changed with regard to the disillusionment was especially true in respect to being a expectations concerning the role of the mother of a child mother and feeling satisfaction from their motherhood. with disabilities in that it is still expected that she should However, they felt competent in their roles as mothers sacrifice fully in her devotion to her child. of children with profound intellectual disabilities. They Mother: I wanted to go back to work but everyone, even pointed out, however, that by being constantly exclud- my mother, said that it wouldn’t be appropriate, that I ed from different environments, they were not able to should stay with my child because he was sick. People fully talk about their problems, their reality, or how they think that a mother like me should not work, should not function. travel. I ask, is there anything more? I didn’t go back to Mother: I am a woman, I am a human being, I am work, I have become bitter, I have been left alone. I have a citizen. I also need to go to the doctor; I also feel like never left Poland. [Zuzanna] going to the hairdresser or to the store. But often, because of my situation, I can’t because I have no one who would Mother: I once dreamed of having a child and then, stay with my son. [Inga] finally, yes, I did! But I didn’t want to be a slave to any- one because that’s the correct name for that. My husband Mother: I had friends once, but they had their own lives, thought that only I have duties, all the duties. I was ev- and somehow it got blurred. Nobody wanted to take re- erything but at the same time nobody for years. [Hanna] sponsibility. It’s so strange, you know. On the one hand, everyone offered to help but when the need occurred there Mother: It would be best to make a list of what we can weren’t many people willing to help. [Hanna] and cannot do. Going to the hairdresser’s - prohibited; having sex - prohibited; spending money on yourself and The most awkward thing in the motherhood of the not just on the child - evil. It has been like this, and it participants was to find space for themselves. Since they still is now. It took me some time to tell myself and others devoted all their time to the rehabilitation of their chil- that what I do, what kind of mother I am, is only my dren with disabilities, they learned to live a lonely life. business. And I have even been happy for years. [Łucja] They also stressed that the older they were, the more dif- ficult loneliness was for them. The interviewees’ statements showed that it took Mother: I wanted to get married again. But my moth- some of them some time to decide to consciously oppose er, my father, my whole family did not want it. They selected aspects of the cultural model related to the role thought that I shouldn’t, that no one would be able to of the mother of a child with a disability. We can see love my son. Today I am all alone, sometimes I talk to certain connections between women’s decisions and the myself. [Nina] changing socio-cultural conditions in Poland. Mother: I remember when women went on strike, it was Mother: It’s nothing that she doesn’t understand much. about [child] maintenance. It was in the 1990s. Yes, it I talk to her, shout, explain... Sometimes I talk to my- was the time when women were no longer frightened. self. Let’s be honest, I feel lonely. In the past, when I was There were a few mothers who activated us all and made younger, it was better; today I’m not only old but also us realise that it was high time to stop staying at home. alone. [Inga] That our children deserve a decent life, but so do we, women. [Agata] The analysis of the interviewees’ statements indicat- ed that women were aware of neglecting themselves and Mother: There was no tolerance for a woman to say: of the difficulties in getting out of their situation. Even “Sorry, I’m tired” or “Sorry, I’m going to have a beer” when they had an opportunity to devote time to them- or “Sorry, but I need a break”. But times have changed. selves, they could not stop thinking about their child... Doi: https://doi.org/10.52291/ijse.2021.36.13 6 Diana Aksamit and Maria del Mar Badia Martin IJSE 2021, 36(2), 1-12 This probably results from the Polish culture of moth- account not only the profound degree of disability but erhood in which the woman is fully responsible for the also other degrees and types of disability). child and is obliged to provide the child with the best of everything and what is considered appropriate by society Inadequate Social and Legal System to the Needs of (Hryciuk & Korolczuk, 2012). These women pointed to Mothers and their Children with Severe Intellectual many examples of social control and evaluation, social re- Disabilities quirements, and expectations concerning raising a child Legislation often unequally grants support to people with with profound intellectual disabilities. specific degrees of impairment or types of disability (i.e., Mother: The public opinion is that a mother like me also to their parents). As mentioned previously, both in should only look after the child. It is not appropriate for Poland and worldwide (Arvio & Sillanpää, 2003), the me to go on vacation because it will be automatically group of people with profound intellectual disabilities claimed that I did it using public funds. It’s not right for represents the smallest percentage of the population. The me to be neat, nicely dressed, to have a car. This raises size of the group has an impact on the number of legal some social objections and internal objections. [Irena] acts, models of social support and interest in this issue, as well as on the quality of life of adults with profound Mother: It works like that: when I want to buy new intellectual disabilities and their carers (this study pays shoes for myself, first I think if Zosia has everything. particular attention to mothers). Respondents’ state- When I buy myself something, I have a guilty conscience. ments concerning the issue of social support systems I don’t know, this is how it works. If I leave for a while, I are presented below, organised around timeframes (past, want to come back a moment later. Once I left for a few present, future). days and my sister stayed with her, I couldn’t rest, I kept In the 1990s there was legislation in Poland pertain- looking at my phone. [Laura] ing to the system of support for people with disabilities. This legislation referenced these populations: “disabled”, Mothers doted their already adult children but ig- “parent of a person with a disability”, and “legal guardian nored their own needs. They believed that their decisions of a person with a disability.” However, the level, nature about sacrifice were right. This attitude was a result of the and type of support needed for these groups were not lack of solutions in Poland supporting women bringing taken into account. This was especially true for moth- up disabled children and taking care of them throughout ers of people with severe intellectual disabilities, because their lives. Some of the women referred to women’s sexu- their reality was unknown in the social and scientific dis- al and emotional needs and the need for physical touch. course. This group of mothers was “invisible social be- Mother: I was 32 when I was left alone. I had to forget ings”. about my needs. I didn’t have sex for years, because of Mother: Nobody knew what to do with our children. It how, with whom. Sometimes a person would like to be was suggested that they should be admitted to care facil- hugged by someone, hear something nice. I’ll be honest, I ities and the problem of both the child and the mother dreamt that maybe I will meet someone new with whom would be solved. There was no way to support both the I will build a new family. [Julia] child and the woman. The decision was up to us: you wanted to have a child, then stay at home and take care Mother: There was no man in the house. But it wasn’t of your child; you want to work, i.e., live like anyone just about sex. I wanted someone who would love me else, give away your child and stop looking for problems. and my child. But it was too difficult for men, in a way [Stanisława] I understand them. [Antonina] Mother: Nobody asked how I felt or if I needed any- The statements of the mothers surveyed show that the thing. If one of my son’s doctors asked about me, it was a quality of care for a person with profound intellectual dis- miracle. Everyone asked about the child. And me? There abilities consists not only of the mothers’ commitment, was no support for us, none. Nobody knew what I felt, but also of cultural, social, and political factors. At the how easily each of us was excluded from life among peo- same time, the research conducted in a group of moth- ple. [Klementyna] ers of adults with profound intellectual disabilities can become a catalyst for change in thinking about mother- In Poland, until 1997, people with profound in- hood in relation to a child with disabilities (taking into tellectual disabilities were excluded from compulsory www.internationalsped.com 7 Experiences of Mothers Who Care for Adults with Profound Intellectual Disabilities... IJSE 2021, 36(2), 1-12 schooling, and most of them were placed in institutions. In Poland, since 2015, the importance of national and The situation has changed with the enforcement of the cultural traditions has been gradually increasing, which, Regulation of the Minister of National Education of 30 as the respondents emphasised, further strengthens the January 1997 on the Organisation of Revalidation and conservative image of motherhood, vocation, and obvi- Education Activities for Children and Young People with ousness (Titkow, 2012). According to the respondents, Profound Intellectual Disability (Journal of Laws of 1997 they are expected to make sacrifices regardless of their No. 14 item 76). mental condition or personal needs, they are expected Mother: He had a home education. A teacher came to be mothers according to an imposed stereotype. The twice. They did not want him at school, well, that’s how women emphasised that it is they who are supposed to it was. But no matter what, then I had two days and provide support, not to expect to be helped. could sit down for a while, I could take a break. A year Mother: Now, it is even worse. It is changing in Poland, passed and he started going to school for 3 days and I but for the worse. Much is said and written about the started working in the laundry. For those three days, I family. But it’s not going to do any good. All the time we could be myself, I could go out to people. [Liliana] have a problem thinking about a working, career-orient- ed mother. A mother is always with a child. Sometimes Mother: I was surprised when the psychologist and the I have an impression that these young women can feel kindergarten principal asked how I was doing. They gave social pressure - if you don’t give birth, you are not a great the contact details of a foundation so that I could meet Polish woman. [Zyta] with other parents. [Celina] Mother: They are introducing respite care, creating some Referring to their present situation, most of the re- projects. But has anyone asked me if I, if we, need such spondents stressed that, in their opinion, not much had support? You are the first one to come to my house and changed in Poland for parents or legal guardians of peo- see how I live. It is 2019 and I have to carry my son in ple with profound intellectual disabilities. They empha- my arms, I have to ask for money to live because I have sised that the number of legal documents meant to sup- been forbidden to work. Someone failed to understand port families raising children with disabilities is gradually that our children are no different from any other child in increasing, but this has no impact on their psychological Poland. [Helena] and emotional situation. This legislation is intended to support mothers of children with profound intellectu- The women’s statements revealed their anxiety about al disabilities on the one hand, but on the other hand, the future. This anxiety had two dimensions. Firstly, they it puts them in a position to choose whether to receive were worried about the welfare of their adult child if they, childcare benefits or to take up a professional career. The the mothers, passed away first; they were concerned that choice is difficult because Polish law does not allow for their child would be left alone or have to go to a state combining these two revenues. institution such as a nursing home (24-hour care facil- Mother: More than a half-century that I have lived... ities for the elderly, sick and disabled). Secondly, they Everything has changed, thousands of laws, laws that we were anxious about whether they would be able to cope have all been waiting for. And what is the result? There mentally with their child’s death and whether they would was no place or mention of our children, of us. We are in be able to live alone after the death of their child. They a slightly different situation, but I don’t know if anyone emphasized that, despite many difficult experiences, their can see it. I will tell you; nothing has changed for fifty motherhood was the meaning of their life. years. Save the fact that now they let our children go to Mother: I worry every day, I am afraid. I do not know school. But for me as a mother, today sick and old - noth- what will happen to him if I pass away. Who is going ing... [Irena] to hug him? They will feed him and change his nappy, nothing more. I am afraid that if he passes away, I won’t Mother: I couldn’t work, I couldn’t make money. Today be able to live. I am sorry but I cry when I think about the same thing. I feel so sorry for these young mothers. it. It is the meaning of my life; he is my life. [Malwina] They fight, go to work and their benefits are taken away from them. But women are strong, they will manage - Mother: I don’t know what is going to happen. I know that’s what they think about us. [Alina] one thing; I can’t live differently. I wanted that one day, I could wake up in the morning, drink coffee, go for a Doi: https://doi.org/10.52291/ijse.2021.36.13 8 Diana Aksamit and Maria del Mar Badia Martin IJSE 2021, 36(2), 1-12 walk, lie down in the tub, go somewhere. But it is gone. their children need universally understood support. Ac- I want my child to live, and I want to be with him. He cording to the respondents, their life experience of moth- keeps me alive. There are many plans regarding our chil- erhood is already a specific source of information support dren, that there will be houses, foster homes... but these for younger mothers of children with profound intellec- are plans. [Nina] tual disabilities. The mothers repeatedly stressed that the support provided opens up the possibility of using alter- None of the respondents were certain of any positive native sources of social support and informal social net- outcomes for the future of an adult with profound in- works. One of the problems, according to the in-depth tellectual disabilities. Most of them stressed that, despite analysis of the interviews, was the nature and type of sup- multiple attempts, they were not able to fully secure their port that was institutionally imposed on women, which children’s future. For them, the future is a source of con- they often did not need. According to the respondents, cern and is seen as something that keeps them alive and when support is tailored to the actual needs of mothers, ‘doesn’t let them die. then it raises their self-esteem, satisfaction with mother- Mother: I know there is nothing I can do, so I have to hood makes them more independent and gives them the live. Maybe the day will come when someone says: “Here strength to act. In contrast, support that is not tailored you are, this is a centre for you and your son, like a nor- to the mothers’ actual needs weakens their psychological mal home but with support”. I cannot die, there is so functioning. much I have to do. [Wiktoria] Motherhood as a Source of Self-Fulfilment Mother: It is ridiculous, but I’m not planning to die... If An analysis of the research suggests that, despite many I am, it is only together. [Wanda] negative experiences, motherhood has, over the years, be- come a primary meaning in women’s lives, a point of ref- The interviewees indicated that, as they grew older, erence in their self-biographies. The interviewees empha- respondents felt increasing that they needed someone sised that motherhood provided meaning to their lives close to them or an institution that could secure the fu- and provided a goal, something that kept them alive, a ture of their adult children. The narrative showed that source of self-confidence, self-fulfilment, and their pri- with time, there were fewer and fewer other people in the mary source of joy in life. Some of the mothers even said surroundings of these mothers (e.g. close family, relatives, that this was their mission in life. They took many ac- friends) who would take over the mother’s duties. Re- tions, but it was a struggle for their children’s place in spondents emphasised that the older they and their chil- the public space. This was one of the elements of moth- dren were, the shorter the “support chain” was becoming. erhood that became the axis of the respondents’ self, and The women’s statements suggested that they lacked these they gave it particular significance. multidimensional supports for most of their lives and Mother: Nothing matters, only she matters. There was that they have had to work extremely hard to secure any a time when I could not find the meaning of life. I just help to which they were legally entitled. This is a disad- did not know what the purpose of my life was. But now vantage for two reasons: mothers are discouraged from I know that she is my whole life. I know what I can do seeking support, and even if it is tailored to their needs, best - be a mother. [Sylwia] they do not trust it and they stop exercising their rights. Mother: It cannot be like that - that I should keep asking Mother: I cannot imagine another life today. I may have all the time. For as long as I can remember, I have been wanted to have a different life in the past, but not now. asking. I have learned to tell lies. Yes! This is not how it We have to be able to accept our fate. I explain that to should be. [Ludmiła] young mothers, but everyone has to see for themselves that this child is our miracle, it is the child that makes us so Mother: There is much that each of us has to ask for. strong. [Rozalia] Sometimes I feel as if I were extorting money from offi- cials. But I do not spend it on trivial things, and I have Although many studies still focus on the negative as- to document every penny. [Liliana] pects, there are also those that show the positive aspects of parenting a child with disabilities: spiritual growth, From the statements of mothers of adults with pro- family harmony, ability to cope with many demanding found intellectual disabilities, it follows that they and situations, shared parenting (Ferguson et al., 1988). www.internationalsped.com 9 Experiences of Mothers Who Care for Adults with Profound Intellectual Disabilities... IJSE 2021, 36(2), 1-12 There are also studies describing the nature of the roles of tual disabilities themselves. The statements made by these mothers and fathers, taking into account the disability of women show the importance that mothers ascribe to the child: the process of personal regulation of negative motherhood, to femininity, and to the situation in which emotions connected with mental strain, ways of manag- they find themselves, which has for years been derived ing difficult situations, the influence of the mental health from the fact that the existing support system does not of individual family members on the functioning of the take into account their real needs. As indicated by the entire system (Goddard et al., 2000). respondents, it is not entirely about the lack of financial Mother: I will be honest, sometimes I clench my teeth, support, as financial support did not solve the problems sometimes I cry in the bathroom. But I can also look at they experienced; for example, a sense of difference, mar- life differently from all my neighbours. I have learned to ital relations, creating their femininity and satisfying or make decisions; I have learned to be humble and accept neglecting their own needs. There is a need for the social things. [Stanisława] support system to define the type and nature of support, giving mothers a choice. Tailored help for these women Mother: This child has taught me many things, first of could, on the one hand, support them with their individ- all, to see beauty in small things, to enjoy every moment. ual emotional and physical challenges; care activities for He has taught me to find something good for myself in an adult child (e.g., feeding, carrying, and dealing with suffering. It may be strange, but I would not be that rich problem behaviour). in spirit today if it were not for my daughter. She is the We can see that over the years the challenging moth- one who taught me love. [Ksenia] erhood experienced by these women has become increas- ingly difficult. Even so, for most of them, it was a source The analysis of this data suggested that the critical of strength, a point of reference for the self. Thanks to events that occurred were an opportunity for significant the experience they have had, they are potential support life changes. By re-evaluating their challenging experi- for young mothers who, if the social system does not im- ences, mothers restructured their self which increased prove, will have the same types of problems. Therefore, their sense of meaning in life. there is a need to continue research in this area, to pub- licise these issues both in Poland and worldwide so that CONCLUSION ageing mothers can have a better quality of life. There is a need for discussion between mothers and state deci- Studies show that the experiences of mothers caring sion-makers in various sectors. Those who are active and for adults with profound intellectual disabilities reveal a responsible for the social system should take on the role different model of motherhood not well represented in of advisers. The system should be flexible to take into research or policy. The current research suggests that the account individual situations of mothers and their adult traditional model of the Polish mother, which for years children. Because it is inherent in human contact, taking has shaped the image of the mother of a child with dis- place in the social space and forming the basis of social abilities, negatively impacts women in these roles. The life, to wish to establish social relations and to see another traditional model of the Polish mother has also translated participant in this process as an exceptional, unique ele- into expectations for mothers without taking into ac- ment (Buber, 1992; Stewart, 2009). count the voice of women and their acceptance of this. We believe that when the reality of mothers of chil- Research shows that the current scientific and social dren and adults with profound intellectual disabilities discourse takes into account the situation of the mothers is known and demonstrated, a chance to anchor a new of children with different degrees of disability, but it does model of motherhood will emerge. It should be stressed not attend to the motherhood of ageing women, senile that this new model of motherhood is just being generat- women, and mothers looking after adult children. Thus, ed by the women we are studying. there is a need to create a new model of motherhood for this group of mothers, not only in Poland but worldwide. Study Limitations and Directions for Future Research Further theoretical analysis and research are needed to Interpretation of these results must be made with caution bring about change in this area. This can become a voice for a number of reasons. First, this study examined pri- for change at the state level in terms of existing solutions marily older women who are mothers of adult children to support mothers of adults with profound intellectual with profound intellectual disabilities. Research should disabilities, as well as individuals with profound intellec- also be carried out with younger mothers of children with Doi: https://doi.org/10.52291/ijse.2021.36.13 10 Diana Aksamit and Maria del Mar Badia Martin IJSE 2021, 36(2), 1-12 profound intellectual disabilities to be able to identify individual stages and critical events which have an im- pact on their biographies. There is also a need to examine ACKNOWLEDGMENT the mothers of children and adults in different countries Many thanks to Michael Wehmeyer from the University of Kan- and cultures to be able to draw possible cross-cultural sas in the USA for his unstinting support throughout the re- comparisons. We believe that this could provide insights search project and, in particular, for his insightful comments into the women’s experiences in highly developed coun- on this article. tries where, as we assume, the support system is also at a FUNDING higher level. The issue of profound intellectual disability The authors disclose receipt of the following financial support should also be addressed in more detail to examine how for the research, authorship, and publication of this article: by a particular disability affects the motherhood of women the The Maria Grzegorzewska University. at various stages of the process. Given the applied qual- CONFLICT OF INTEREST STATEMENT itative research methodology, a weakness may be the in- The authors declare that the research was conducted in the fluence of the researcher on the subject, as well as the absence of any commercial or financial relationships that could unrepresentative group size. be construed as a potential conflict of interest. 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