Disability is still a taboo subject within many parts of Asian cultures. People with disabilities in countries like India and Pakistan are often seen as outcastes of society and worthless citizens. They won’t grow up to perhaps work and look after parents as many Asian people hope, and are therefore seen as a burden in society and families.
There is still an element of old school of superstitious thoughts that revolve around having children with disabilities in South Asian countries. They see it as some sort of punishment, and promoting the idea that being different is always a negative thing. Many even believe that disability can be caused by black magic. Bad karma also a common belief amongst people, they think God has given you this child as a result of wrongdoing from your former life or current life. These beliefs have been passed on from generation to generation and although countries like India are changing slowly, there is still a long way to go in terms of discrimination, compassion, lack of understanding, empathy, humanity and attitude.
We at Saas Chat team have spoke to Manpreet Kaur, the founder of the charity called Hope and Compassion which was established in 2010. She found that areas of Punjab, North India lacked knowledge of Disability and SEN, especially those that are ‘invisiable’ such as Autism, Dyspraxia, Dyslexia etc are completely unheard of. The team found a complete lack of compassion and sadly, abandonment of many children with special needs. Hope and Compassion is a charity that takes knowledge from good practices in the UK and works with other organisations abroad to improve the lives of children with special needs, alongside their families who are living in poverty in developing countries. The main objective is to promote awareness through social care education, using modern technology to ensure that the appropriate care and knowledge can be disseminated to both helpers and children. They are currently working on the vision of building a centre in Amritsar, Punjab to provide this alongside diagnosis, assessments, interventions and the many forms of therapy available in the UK More information to be found on their website www.hopecompassion.org.
Hope and Compassion have been working with local communities facilitating Autism talks in gurdwaras and places of worship to raise awareness within the Asian community. On many occasions at these talks, Manpreet Kaur and her team have experienced listening to parents raising their concerns, pains and worries, especially mothers. Many have told stories how they have been mis-treated by families or society and carried the burden on their own. They have been unable to talk to their families and felt in isolated. One woman felt she knew there was something different about her child, but petrified to talk to her husband or in laws as she feared how they would react and be made to feel like a failure of some sort. Another told how her mother in law said it would have been better for her to have a third daughter rather than a son who had special needs. Some families and their special needs children have actually been told to leave the gurdwara as they are not welcome there. Even own relatives have told parents that they should have left their child at home instead of bringing him or her to the wedding and spoiling it by causing a meltdown. Either that or people just stare. Have you experienced anything like this or witnessed anything like this?
However, on a positive note, Manpreet Kaur has seen how change is coming slowly, especially amongst second or third generation British Asians. She has met inspiring mothers who have learned to be more patient, love unconditionally, and be more compassionate and kind. She has also met families where they treat their children all equally and do not believe in the old traditional superstitious views, but see this as a blessing instead. One woman we spoke to says that looking after special needs and autistic daughter is her true ‘seva’ (selfless service) and is more meaningful to her than helping out in the kitchen in the gurdwara. The team at H & C feel inspired by these mothers and families who are glued together and will move mountains to make sure their child with SEN is loved, looked after and most importantly a valued member of their family.
There is still a long way to go within Asian community to raise awareness, education and empathy. We need to erase the superstition that revolves around having disabled people within our families and then only then, will we alleviate discrimination. How can we do this? Your thoughts would be much appreciated.
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Written by Saas Chat team and Manpreet Kaur.