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EN
The article concerns social functioning of women with Turner syndrome, focusing particularly on their family life (relations with parents, siblings, partner and children), and relations with others (friends, acquaintances, workmates and members of TS support organizations). The author also tries to find correlations between growth hormone treatment, sex hormones treatment, age of TS diagnosis, karyotype and social functioning of TS women. Turner Syndrome is a quite common (1 in every 2500 live female births) human genetic disorder which affects only females. Females with TS lack all or part of one of two sex X chromosomes. The phenotype of TS women includes short stature and ovarian failure (which usually causes infertility) specific anatomic abnormalities (such as a short neck with a webbed appearance, a low hairline at the back of the neck, and low-set ears) and characteristic neurocognitive profile, which usually does not include mental retardation. The treatment of TS girls includes growth hormone and sex hormones therapy. 71 women took part in the study (30 from Poland and 41 from other countries – USA, Australia and United Kingdom). Researches indicated that generally women with TS showed relatively good functioning in relations in family of origin (with parents and siblings) and in social environment (quite high professional activity, good functioning in relations with friends and acquaintances). Relations with parents, especially with mothers, were usually very close, but often revealed overprotective parents’ attitude towards TS women (even in their adult life). Relations with fathers were slightly worse, more often revealing lack of fathers’ acceptance towards TS women. Relations with siblings were rather close, but again revealed overprotective siblings’ attitude towards TS sisters. Researches also revealed relatively weak functioning of TS women in relations in family of procreation (with partner and children).
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2020
|
vol. 18
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issue 4
407-420
EN
The study aims to uncover and explore the social identities of women suffering from a genetic disorder called Turner syndrome (TS), and whose main symptoms are a short stature and gonadal dysgenesis. Such a genetically-determined physical appearance is argued to influence the positioning of TS women in the web of social relationships and identities. This linguistic analysis of narratives delivered by Polish women with TS in semi-structured interviews aims to explicate the extent to which they are actors or recipients in creating their own identities. The analysis draws on the assumptions of the ‘small story’ paradigm developed by Michael Bamberg (1997, 2005) who claims that in interaction, narrative is not only used to convey meaning, but also to construct the identities of the interlocutors. Thus, narrative is treated in a functional way, in which its formal structure and content are integrally associated with its use and any deviations are relativized as a consequence of a user’s deliberate activity.
EN
In post-modernity, the human body is not a private domain of the individual, but the product of hegemonic cultural discourses. Because of short stature, the appearance of the body of a female with Turner syndrome may differ from the socially imposed ideal. As a result of growth hormone supplementation, it can achieve average height in a given community. In Poland, this therapy has been available since 2000, which means that women born before 1980 did not receive it, so their height significantly differs from the average in Polish society. In this study, testimonials of women with TS collected in semi-structured interviews were subjected to critical discourse analysis. The findings reveal that the body of those females with TS who have not been treated with growth hormone is categorized as non-normative and socially stigmatized, while the body of those who have undergone the therapy fits the socio-cultural schema of corporeality, which translates into psycho-social well-being of these women. Social expectations are reflected in the perception of their own body by women with TS and their adjustments to the social norm.
PL
W ponowoczesności ciało człowieka nie jest prywatną domeną jednostki, ale obszarem działania i produktem hegemonicznego dyskursu kulturowego. Wygląd ciała kobiety z zespołem Turnera może znacząco odbiegać od narzuconego ideału, ponieważ głównym jego symptomem jest niskorosłość. W wyniku suplementacji hormonem wzrostu (GH), może ono osiągnąć średni wzrost w danej wspólnocie. W Polsce terapia GH jest dostępna od roku 2000, co oznacza, że kobiety urodzone przed rokiem 1980 jej nie otrzymały, a więc ich wzrost znacząco odbiega od średniego w polskim społeczeństwie. W przeprowadzonym badaniu jakościowym, wypowiedzi kobiet z ZT zebrane w wywiadzie pogłębionym, zostały poddane krytycznej analizie dyskursu, która miała wykazać jak zmienia się pozycja społeczna kobiet wraz ze zmianą wzrostu ciała. Z badania wynika, że ciało kobiet, które nie były leczone hormonem, jest kategoryzowane jako nienormatywne i jest napiętnowane społecznie, natomiast ciało tych, które przeszły terapię wpisuje się w społeczno-kulturowy schemat cielesności, co przekłada się na ich dobrostan psycho-społeczny. Oczekiwania społeczne odzwierciedlone są w postrzeganiu własnego ciała przez kobiety z ZT i ich działaniach dopasowujących do normy społecznej.
EN
The article is about the situation of women with Turner Syndrome in the job market. The patients are suffering from a genetic disorder that leads to short stature, infertility, organ malformation and higher risk of many long-term diseases. The daily functioning of TS women does not differ from the functioning of women with a normal karyotype, though it is true that infertility and health problems do affect many aspects of their lives. Potentially they may experience the two types of discrimination in their working place – discrimination against women and discrimination against people with disabilities. The research engaged 14 adult women with TS. The questionnaire included questions about health history, family situation, education and career experience. The recommendations for good practices were also included.
PL
Niniejszy artykuł poświęcony jest sytuacji kobiet z zespołem Turnera na rynku pracy. Pacjentki, o których mowa, dotknięte są schorzeniem genetycznym, prowadzącym do niskorosłości, bezpłodności, wad narządów wewnętrznych oraz tendencji do zapadania na liczne choroby przewlekłe. Codzienne funkcjonowanie kobiet z ZT w żaden sposób nie różni się od funkcjonowania kobiet o prawidłowym kariotypie, choć bezpłodność i choroby towarzyszące mają wpływ na różne aspekty ich życia. Potencjalnie mogą one doświadczać dwojakiej formy dyskryminacji w swoim miejscu pracy – ze względu na płeć i ze względu na niepełnosprawność. Przebadano 14 dorosłych kobiet z zespołem Turnera. Zaproponowany kwestionariusz ankiety zawierał pytania dotyczące stanu zdrowia i historii leczenia, sytuacji rodzinnej, ścieżki edukacyjnej oraz doświadczeń na polu zawodowym. Załączono również rekomendacje do wdrożenia w środowisku kobiet z ZT w celu kształtowania dobrych praktyk.
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