TY - JOUR
T1 - Bringing sunshine children into the light
T2 - Exploring a role for occupational therapy with a parent association in Kyrgyzstan
AU - Burns, Allison
AU - Eshalieva, Dina
AU - Bakhshi, Parul
N1 - Funding Information:
Parents of children with DS are standing up to advocate for their children by running projects to raise awareness, fight stigma, and promote the participation of people with DS. Sunterra is an association of parents of children with DS founded in 2016 in Bishkek, the capital of Kyrgyzstan. Parents of children with DS call them ‘sunshine children’ to avoid the stigma around the word ‘daun’, thus the organisation is called ‘Sunterra’, territory of the sun. The mission of Sunterra is to defend the rights of people with DS and their families and to fight for the full integration of people with DS in Kyrgyzstan. Sunterra utilises a small building on the grounds of a local church as a resource centre, where they provide the DS community with access to a wide range of resources such as emotional support groups for mothers; swimming, dance, speech, and school preparation classes for children with DS; weekend events for young adults with DS; and many seminars on DS for parents, teachers, and community stakeholders. Through tireless advocacy, the mothers of Sunterra have developed a network of community partners who provide a number of the services, such as a defectologist who works with the children, a local photographer who provides classes for the young adults, and professors from a local university who teach seminars to parents. Sunterra’s support has caused a number of families to decide to keep their newborn children with DS at home instead of institutionalising them. Sunterra regularly promotes awareness about DS through activities such as fashion shows featuring children with DS and public photo galleries of children with DS which have been publicised on national television. Sunterra’s projects are expanding internationally, as representatives from Sunterra attended a collaborative conference in 2018 with representatives from Uzbekistan and Kazakhstan to create the Central Asian Network for Down Syndrome, and representatives from Sunterra have spoken at the last two UN conferences on Down Syndrome in New York City. This group of self-mobilized parents of children with DS is blazing a trail for inclusion in Kyrgyzstan and has partnered with the American University of Central Asia to write a grant to integrate 6 children with DS into regular kindergartens and provide trainings about DS to teachers, parents, and school administrators. This project has moved ahead this year with funding from Open Society Foundation. Sunterra also assisted with the employment of the first adult with DS in Kyrgyzstan, further promoting access to meaningful occupations. The membership of Sunterra has grown to over 200 families with 30 members playing active advocacy roles in the organisation. Sunterra has recently opened a new branch in Osh, a city in the south of Kyrgyzstan.
Publisher Copyright:
© World Federation of Occupational Therapists 2019.
PY - 2019
Y1 - 2019
N2 - People with Down Syndrome (DS) in Kyrgyzstan face social exclusion and occupational deprivation. Due to the widespread stigma of DS, cultural attitudes of mother-blaming, and a Soviet precedent of institutionalisation, many children with DS remain hidden at home. Currently, there are few educational opportunities for children with DS and even fewer employment opportunities for adults. Mothers of children with DS in Kyrgyzstan have self-mobilized to form a resource centre called Sunterra that promotes awareness about DS, provides support for parents, and pilots activity programmes for people with DS. Occupational therapy is not yet a recognised profession in Kyrgyzstan, but Sunterra has expressed interest in receiving specialist support from occupational therapists to promote the health and inclusion of people with DS through professional seminars and parent trainings on motor development, behaviour management, and life skills. By partnering with Sunterra, occupational therapists can promote social justice and inclusion for a marginalised group and raise awareness about occupational therapy in Kyrgyzstan.
AB - People with Down Syndrome (DS) in Kyrgyzstan face social exclusion and occupational deprivation. Due to the widespread stigma of DS, cultural attitudes of mother-blaming, and a Soviet precedent of institutionalisation, many children with DS remain hidden at home. Currently, there are few educational opportunities for children with DS and even fewer employment opportunities for adults. Mothers of children with DS in Kyrgyzstan have self-mobilized to form a resource centre called Sunterra that promotes awareness about DS, provides support for parents, and pilots activity programmes for people with DS. Occupational therapy is not yet a recognised profession in Kyrgyzstan, but Sunterra has expressed interest in receiving specialist support from occupational therapists to promote the health and inclusion of people with DS through professional seminars and parent trainings on motor development, behaviour management, and life skills. By partnering with Sunterra, occupational therapists can promote social justice and inclusion for a marginalised group and raise awareness about occupational therapy in Kyrgyzstan.
KW - Central Asia
KW - Down Syndrome
KW - Kyrgyzstan
KW - mothers
KW - occupational therapy
KW - parent advocacy
UR - https://www.scopus.com/pages/publications/85142515183
U2 - 10.1080/14473828.2019.1615171
DO - 10.1080/14473828.2019.1615171
M3 - Article
AN - SCOPUS:85142515183
SN - 1447-3828
VL - 75
SP - 90
EP - 93
JO - World Federation of Occupational Therapists Bulletin
JF - World Federation of Occupational Therapists Bulletin
IS - 2
ER -