For the past 11 years, Winnie Ndeta has literally walked step by step with his fast born child, Jabali. Winnie has endured a myriad of challenges while raising her son and as a mother she always ensures the son gets the care he deserves.
Jabali is a person with a disability suffering from autism. Winnie, A lecturer at the St Pauls University, reveals that playing a role of a mother and a caregiver is an uphill task due to its involving nature.
‘’Raising an autism child is a full time job. As a caregiver I must ensure he has shower, eats, and dresses up. I always watch him to ensure he is safe and avoid harming himself. Such commitment takes a lot of time and resources. Sometimes you have to get someone to help, of which you have to pay. Such drains the family in terms of physical, emotional and financial. It also affects one’s social life, work life since as a caregiver I must be there to provide suport’’ Said Winnie, who doubles up as a member of parents of children with autism and Differently talented society of kenya as well as a volunteer communication advisor.
She added that the society and community is yet to generally accept persons with autism.
‘’Sometimes community perceives an autistic person as a curse or someone with no sound mind. Stigma is also high in society.’’
On matters of parental hood, caregivers in most cases take the challenge alone since a majority are single mothers.
‘’Men mostly take of due to various reasons such fear of association with such condition, cultural ties, doesn’t know how to handle disability or bad perception of society’’ added winnie
To this end Winne Ndeta is calling on the government and policy makers to intervene and create laws that recognise caregivers in the country.
‘’Law does not recognise us –the law only recognise person with disability – so it become very difficult for a caregiver to ask for support or benefits that are legally provided to caregivers’’ she said
Winnie was speaking during a media training seminar at a Nairobi hotel organised by Internews.
The 3 day training seminar was also attended by Hon Isaac Mwaura, Media trainer & Disability researcher Jacky Lidumbwi and National Council Of persons with Disability CEO Harun Hassan.