Donne con disabilità e Progetto di vita: l’assistenza personale e il sostegno alla maternità

Titolo Rivista EDUCATION SCIENCES AND SOCIETY
Autori/Curatori Barbara Alesi, Arianna Taddei
Anno di pubblicazione 2025 Fascicolo 2025/2
Lingua Italiano Numero pagine 13 P. 253-265 Dimensione file 0 KB
DOI 10.3280/ess2-2025oa21240
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Le donne con disabilità affrontano numerose sfide nell’esercizio del loro diritto genitoriale, tra cui l’inaccessibilità dei servizi sanitari ginecologici e la mancanza di servizi di supporto genitoriale progettati per rispondere ai loro bisogni. Alla luce di tali considerazioni, il contributo riflette sul Progetto di Vita individuale, personalizzato e partecipato in relazione alle tipologie di sostegno che esso può offrire. In particolare, viene approfondita la figura dell’assistente personale autogestito declinandola come modalità di sostegno in grado di migliorare la qualità di vita delle madri con disabilità e di promuovere in loro processi di autodeterminazione. Le lacune presenti negli attuali servizi socio-psico-pedagogici, tuttavia, pongono la pedagogia speciale e i legislatori politici di fronte alla necessità di progettare nuove modalità di intervento e presa in carico dei genitori con disabilità. Pertanto, a conclusione del contributo vengono proposte possibili traiettorie inclusive e pedagogiche per migliorare il sostegno alla genitorialità fornito alle persone con disabilità

Parole chiave:Maternità;Sostegno Genitoriale;Progetto di vita

  1. Acar Z., Oskay Ü., & Kula G. (2024). Challenges Faced by Mothers With Visual Impairment From the Preconception Period Through the Postpartum Period. Journal of Midwifery & Women’s Health, 0(0). Doi: 10.1111/jmwh.13619.
  2. Addlakha R., Price J., & Heidari S. (2017). Disability and sexuality: claiming sexual and reproductive rights. Reproductive Health Matters, 4: 9-25. Doi: 10.1080/09688080.2017.1336375.
  3. Banks L., Kuper H., & Polack S. (2018). Poverty and disability in low- and middle-income countries: a systematic review. PLOS ONE, 13(9). Doi: 10.1371/journal.pone.0189996.
  4. Barker L., & Maralami V. (1997). Challenges and Strategies of Disabled Parents: Findings from a National Survey of Parents with Disabilities. Berkeley: Through the Looking Glass.
  5. Bastianoni P. (2009). Funzioni di cura e genitorialità. Rivista Italiana di Educazione Familiare, (1): 37-53.
  6. Berggren U., & Bergman A. (2022). Whether Disabled Parents Receive Personal Assistance for Parenting and the Consequences for Children ‒ An Interview Study. International Journal of Environmental Research and Public Health, 19(6), 3330. Doi: 10.3390/ijerph19063330.
  7. Bergman A., Emilsson U., & Järkestig Berggren U. (2020). Persons with certain functional impairments apply for parenting support. A study of personal assistance assessments in Sweden. Nordic Social Work Research, 12(1): 46-58. Doi: 10.1080/2156857X.2020.1756387.
  8. Collings S., Spencer M., Wedgwood N., & Hindmarsh G. (2022). Supporting the Woman, Supporting the Mother: Final Report. Sydney: Research Centre for Children and Families.
  9. European Commission (2021). Un’Unione dell’uguaglianza: strategia per i diritti delle persone con disabilità 2021-2030. -- Tratto da <a href="https://eur-lex.europa.eu/legal-content/IT/TXT/PDF/?uri=CELEX:52021DC0101">https://eur-lex.europa.eu/legal-content/IT/TXT/PDF/?uri=CELEX:52021DC0101</a>.
  10. European Disability Forum (2022). Report on forced sterilisation in the European Union.
  11. European Disability Forum (2023). Third Manifesto on the Rights of Women and Girls with Disabilities in the European Union.
  12. European Index on Gender Equality (2024). Gender Equality Index. Tratto da <a href="https://eige.europa.eu/gender-equality-index/2024/domain/time/disability">https://eige.europa.eu/gender-equality-index/2024/domain/time/disability</a>.
  13. Emmett T., & Alant E. (2006). Women and disability: Exploring the interface of multiple disadvantage. Development Southern Africa, 23(4): 445-460. Doi: 10.1080/03768350600927144.
  14. Fine M., & Asch A. (1981). Disabled Women: Sexism without the Pedestal. The Journal of Sociology & Social Welfare, 8(2): 233-248. Doi: 10.15453/0191-5096.1456.
  15. Frederick A. (2017). Risky Mothers and the Normalcy Project: Women with Disabilities Negotiate Scientific Motherhood. Gender & Society, 31(1): 74-95. <a href="https://www.jstor.org/stable/44281809">https://www.jstor.org/stable/44281809</a>.
  16. Garland-Thomson R. (1997). Extraordinary Bodies: Figuring Physical Disability in American Culture and Literature. NewYork: Columbia University Press.
  17. Garland-Thomson R. (2005). Feminist Disability Studies: a Review Essay. Signs: A Journal of Women and Culture, 30(2): 1557-1587. <a href="https://www.jstor.org/">https://www.jstor.org/</a> stable/10.1086/423352.
  18. Gasparini E. (2010). L’assistenza personale per una vita indipendente. Sezione di Venezia: UILDM-Unione italiana lotta alla distrofia muscolare.
  19. Giaconi C. (2015). Qualità della vita e adulti con disabilità. Percorsi di ricerca e prospettive inclusive. Milano: FrancoAngeli.
  20. Gichane M., Heap M., Fontes M., & London L. (2017). “They must understand we are people”: Pregnancy and maternity service use among signing Deaf women in Cape Town. Disability and Health Journal, 10: 434-439. Doi: 10.1016/j.dhjo. 2017.03.016.
  21. Gillespie R. (2003). Childfree and feminine. Understanding the gender identity of vo-luntarily childless women. Gender & Society, 17(1): 122-136. <a href="https://www.jstor.org/stable/3081818">https://www.jstor.org/stable/3081818</a>.
  22. Grue L., & Laerum K. (2002). “Doing Motherhood”: some experiences of mothers with physical disabilities. Disability & Society, 17(6): 671-683. Doi: 10.1080/0968759022000010443.
  23. Horner-Johnson W., Dobbertin K., & Iezzoni L. (2015). Disparities in receipt of breast and cervical cancer screening for rural women age 18 to 64 with disabilities. Women’s health issues, 25(3): 246-253. Doi: 10.1016/j.whi.2015.02.004.
  24. Jacob J., Kirshbaum M., & Preston P. (2017). Mothers with physical disabilities caring for young children. Journal of Social Work in Disability & Rehabilitation, 16(2): 95-115. Doi: 10.1080/1536710X.2017.1299660.
  25. Kim E. (2011). Asexuality in disability narratives. Sexualities, 14(4): 479-493. Doi: 10.1177/1363460711406463.
  26. Kroese B., Hussein H., Clifford C., & Ahmed N. (2002). Social Support Networks and Psychological Well-being of Mothers with Intellectual Disabilities. Journal of Applied Research in Intellectual Disabilities, 15(4): 324-340. Doi: 10.1046/j.1468-3148.2002.00128.x.
  27. LaLiberte T., Piescher K., Mickelson N., & Lee M.H. (2024). The over representation of parents with disabilities in child protection. Children and Youth Services Review, 158, 107446. Doi: 10.1016/j.childyouth.2024.107446.
  28. Lanzarotti F., Herren L., Noori S., Devkota H., Roll K., & Hillman S. (2025). The role of stigma on the pregnancy experiences of women with disabilities in Kathmandu: a qualitative study. Disability & Society, 40(8): 2077-2101. Doi: 10.1080/ 09687599.2024.2411526.
  29. Lepri C. (2016) (Ed). La persona al centro. Autodeterminazione, autonomia, adultità per le persone disabili. Milano: FrancoAngeli.
  30. Li H., Mitra M., Wu J., Parish S., Valentine A., & Dembo R. (2018). Female sterilization and cognitive disability in the United States, 2011-2015. Obstetrics and Gynecology, 132(3): 559-564. Doi: 10.1097/AOG.0000000000002778.
  31. Lightfoot E., LaLiberte T., & Cho M. (2018). Parental Supports for Parents with Disabilities. The importance of informal support. Child Welfare, 96(4): 89-110.
  32. London L. (2008). What is a human righits-based approach to health and does it matter?. Health and Human rights, 10(1): 65-80.
  33. MacIntyre G., Stewart A., & McGregor S. (2019). The double‐edged sword of vulnerability: Explaining the persistent challenges for practitioners in supporting parents with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities, 32(6): 1523-1534. Doi: 10.1111/jar.12647.
  34. Malacrida A. (2009a). Mothering and disability. From eugenics to newgenics. In: N. Watson, & S. Vehmas (eds.). Handbook of disability studies (pp. 467-478). London: Routledge.
  35. Malacrida C. (2009b). Gendered ironies in home care: surveillance, gender struggles and infantilisation. International Journal of Inclusive Education, 13(7): 741-752. Doi: 10.1080/13603110903046028.
  36. Matin B., Williamson H., Karyani A., Rezaei S., Soofi M., & Soltani S. (2021). Barriers in access to healthcare for women with disabilities: a systematic review in qualitative studies. BMC womens health, 21(1), 44. Doi: 10.1186/s12905-021-01189-5.
  37. Mitra M., Long‐Bellil L., Iezzoni L., Smeltzer S., & Smith L. (2016). Pregnancy among women with physical disabilities: Unmet needs and recommendations on navigating pregnancy. Disability and Health Journal, 9(3): 457-463. Doi: 10.1016/ j.dhjo.2015.12.007.
  38. Modic K., Pečarič E., & Retelj D. (2023). Personal Assistance. Handobook for understanding independent living. (J. Rocchio, Trad.). Ljubljana: Association for the Theory and Culture of Handicap.
  39. Nacional Counsil on Disability (2012). Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children. Washington: National Council on Disability.
  40. Nacional Research Center of People with Disabilities (2022). Prevalence of Parents with Disabilities in the United States. Waltham: Brandeis University.
  41. Olsen R., & Clarke H. (2003). Parenting and disability. Disabled parents’ experiences of raising children. Bristol: The policy press.
  42. Panko T.L., Cuculick J., Albert S., Smith L.D., Cooley M.M., Herschel M., Mitra M., & McKee M. (2023). Deaf women’s experiences of pregnancy and perinatal healthcare access: A qualitative study. BJOG: An International Journal of Obstetrics & Gynaecology, 130(5): 514-521. Doi: 10.1111/1471-0528.17300.
  43. Powell R., Mitra M., Smeltzer S., Long-Bellil L., Smith L., Rosenthal E., & Iezzoni L. (2018). Adaptive parenting strategies used by mothers with physical disabilities caring for infants and toddlers. Health and Social Care in the Community, (27): 889-898. Doi: 10.1111/hsc.12706.
  44. Prillenltensky O. (2014). Motherhood and Disability. Children and choices. London: Palgrave Macmillan.
  45. Ratzka A. (2014). Model National Personal Assistance Policy. A project of the Eu-ropean Center for Excellence in Personal Assistance (ECEPA). Tratto da: <a href="https://www.independentliving.org/docs6/ratzka200410a.pdf">https://www.independentliving.org/docs6/ratzka200410a.pdf</a>.
  46. Saeed G., Brown H. K., Lunsky Y., Welsh K., Proulx L., Havercamp S., & Tarasoff L. (2022). Barriers to and facilitators of effective communication in perinatal care: a qualitative study of the experiences of birthing people with sensory, intellectual, and/or developmental disabilities. BMC Pregnancy and Childbirth, 22(364). Doi: 10.1186/s12884-022-04691-2.
  47. Sasha M., & Powell R. (2020). Supporting disabled parents and their families: perspectives and recommendations from parents, attorneys, and child welfare professionals. Journal of Public Child Welfare, 15(5), 529. Doi: 10.1080/15548732.2020.1751771.
  48. Sen A. (1999). Development as Freedom. NewYork: Knop.
  49. Selander V., & Engwall K. (2021). Parenting with Assistance – The Views of Disabled Parents and Personal Assistants. Scandinavian Journal of Disability Research, 23(1): 136-146. Doi: 10.16993/sjdr.775.
  50. Shpigelman C. (2014). How to support the needs of mothers with physical disabilities?. Disability and Rehabilitation, 37(11): 928-935. Doi: 10.3109/09638288.2014.948133.
  51. Signore C. (2016). Reproductive and sexual health for women with disabilities. In: S. Miles-Cohen & C. Signore (eds.). Eliminating inequities for women with disabilities: An agenda for health and wellness (pp. 93-113). American Psychological Association.
  52. Stainton T., & Boyce S. (2004). I have got my life back: users’ experience of direct payments. Disability & Society, 15(9): 443-454. Doi: 10.1080/0968759042 000235299.
  53. Strnadová, I., Bernoldová, J., Adamčíková, Z., & Klusáček, J. (2017). Good Enough Support? Exploring the Attitudes, Knowledge and Experiences of Practitioners in Social Services and Child Welfare Working with Mothers with Intellectual Disability. Journal of Applied Research in Intellectual Disabilities, 30: 563-572. Doi: 10.1111/jar.12307.
  54. Taddei A. (2020). Come Fenici. Donne con disabilità e vie per l’emancipazione. Milano: FrancoAngeli.
  55. Taddei A. (2021). Diventare madri. La difficile sfida delle donne con disabilità tra stereotipi e diritti. In: R. Caldin, & C. Giaconi (eds.). Disabilità e cicli di vita. Le famiglie tra seduttivi immaginari e plausibili realtà. (pp. 165-182). Milano: FrancoAngeli.
  56. Tarasoff L., Lunksy Y., Welsh K., Proulx L., Havercamp S., Parish S., & Brown H. (2023). Unmet needs, limited access: A qualitative study of postpartum health care experiences of people with disabilities. Journal of Advanced Nursing, 79, 3324-3336. Doi: 10.1111/jan.15642.
  57. United Nations (1994). Standard Rules on the Equalization of Opportunities for Per-sons with Disabilities.
  58. United Nations (2006). Convention on the rights of persons with disabilities.
  59. United Nations (2018). Disabily and Development Report.
  60. United Nations Woman (2018). The empowerment of women and girls with disabilities. Towards full and effective participation and gender equality.
  61. Wates M. (1997). Disabled Parents-Dispelling the Myths. Oxford: NCT Publishing.
  62. Wendell S. (1989). Towards a Feminist Theory on Disability. Feminist Ethics & Medicine, 4(2): 104-124. Doi: 10.1111/j.1527-2001.1989.tb00576.x.
  63. World Health Organization (2001). International Classification on Functioning Disability and Health.
  64. World Health Organization (2022). Global Report on health equity for persons with disability.
  65. World Health Organization & United Nations Population Fund (2009). Promoting sexual and reproductive health for persons with disabilities.

Barbara Alesi, Arianna Taddei, Donne con disabilità e Progetto di vita: l’assistenza personale e il sostegno alla maternità in "EDUCATION SCIENCES AND SOCIETY" 2/2025, pp 253-265, DOI: 10.3280/ess2-2025oa21240