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In places where disability is often seen as shameful or a curse, disabled children are generally kept hidden away in their homes.
This prompted us to make some more home visits this week, going out to villages, communities and homes to meet with disabled children and their families. This time tracing families with disabled children currently outside of our Special Needs Awareness Programme (SNAP) and not attending monthly meetings.
We started with a father and son. Waalekpiya had come to SNAP for the first time when we were delivering the survey at the start of June - not a typical SNAP meeting. He stood out to me as a newcomer as the meeting is currently almost exclusively attended by women; mothers, aunts and grandmothers of disabled children.
We took some time to find out about his 6 year old son who has both physical and learning disabilities, whom he is raising on his own and encouraged him to join the SNAP meetings on a monthly basis. Waalekpiya is particularly looking for some orthopaedic equipment to aid his son's movement.
Through one of our SNAP members we traced a number of children with disabilities in her area. Though they fell outside of the criteria for the ATE SNAP programme, particularly in terms of their ages, it raised a number of considerations, including strengthening links and referrals to disabled adult groups once they are into their late teens and other support groups for children living with HIV/AIDS.
Another SNAP member took us to meet a relative who is taking care of her disabled grandchild. Kofi, like many of the disabled children we know through SNAP, suffered convulsions as a baby. In order to treat his convulsions he had been injected 25 times. As he had been laid on one side in the hospital, the injections had not been alternated and he has been left paralysed down his right side, affecting the mobility of his arm and leg. Now ten years old, he has been living with his grandmother for 2 years. Though challenging for her to attend the monthly SNAP meetings, her relatives say they will remind her of the date and she will try to come.
It was a really mixed day. Yet again, we came across a severely disabled child left in the care of another family member whilst her mother went to sell at the market. A teenage girl, lying on the ground outside the compound, all covered in dust with just a t-shirt on. Our SNAP Committee members might argue that faced with such challenges of care when they need to work, that parents and guardians should keep their children with them when they go to the market or to the field. But the longer term goal must surely be that a disabled child is treated with love, care and dignity by the members of their family entrusted to look after them even for short periods of time, each and every time.
Overall, it was great to be able to get out to the communities and meet people in their villages and in their homes. Whilst I know the many benefits of the programme we run, and the number of lives it has deeply touched, I am reminded today of the work there is yet to do, and the importance of this programme reaching more people more effectively.
I am raising money for the SNAP programme by doing the London Bridges Trek in September. Thanks to some very generous encouragement I have reached my initial target, but would love to be able to double it! Please see here for details: https://mydonate.bt.com/fundraisers/leelashanti. Or go to the ATE website to find out more about SNAP and to contact us if you would like to get involved: http://ateghana.org/s-n-a-p/
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