Eleven years ago, Dr Winnie Ndeta plunged into an unfamiliar world.
The Communication Studies lecturer at St Paul’s University is a mother of two children, one of whom is an 11-year-old son with autism.
“No one prepares you for caregiving. Neither does one get a manual. Somehow, you figure things out as you go along,” quipped Dr. Ndeta. She was speaking during the 3-day Disability Reporting training for Journalists held on 6th to 8th Dec 2022, about the reality of caregiving for Persons with Disabilities which is often coupled with a low awareness level in society on handling disability-related issues further burdens the caregiver.
Caregivers often go unseen and unheard in disability-related issues. The focus is often on the person with the disability. The pandemic intensified the hardships shouldered by caregivers but pandemic or not, caregiving is hard. Caregivers play a crucial role in the comfort and survival of Persons with Disabilities.
In her case, whenever Dr. Ndeta has a clinic visit for her son, she goes a day ahead to alert the doctor of the kind of patient to expect. She explains, “My son can be very aggressive and gets anxious. I take the prerogative of letting the doctor and nurse know ahead, so they know how to handle him. As a result, sometimes I am given preference during the clinic day. However, this depends on the doctor on duty and the hospital.”
Caregivers are often at risk of developing mental health issues including depression. Not only can caregiving be emotionally draining but also physically and financially draining. Dr. Ndeta joined the Differently Talented Society of Kenya (DTSK), a psycho-social support group. DTSK is a disability advocacy organization that champions the rights of Persons with Autism Spectrum Disorders (ASD).
She volunteers as a Communication Director at DTSK where they create awareness of autism. DTSK also promotes autism-related issues/talents and establishes partnerships and linkage with governmental and non-governmental organizations to promote the well-being of persons on the autism spectrum,” she says.
Aware of the need for support groups, DTSK has been keen to empower caregivers. “In the last two years, the organization acquired grants that went a long way in skills training on entrepreneurship for our members. In addition, some caregivers have received seed capital to start businesses that can support them and their families. We also empower each other socially on dietary interventions, supplements, or even favorable schools for children with autism.
They hold fun days for families to build a stronger bonds, learn and enjoy life. Dr. Ndeta hopes the Kenyan government can enact policies and engage caregivers to create supportive care structures for them. Consequently, she and other caregivers are using advocacy to pursue this.
Globally, research shows that most caregivers are women. Many of them have to juggle their career lives, social lives, and childcare in addition to providing round-the-clock care for their loved ones with a disability. Dr. Ndeta expounds, “Most women take on this role wholeheartedly. But the truth is that the unrelenting demands of caregiving can exert a high toll even on the strongest of women. Sometimes, husbands abandon their wives and child post-birth due to fear, emotional overwhelm, and even stigma from the society.”
Caregivers also bear the financial cost of their loved ones. “Some of the key costs I incur monthly for my son include; monthly neurologist visits, anti-convulsant, supplements, daily occupational therapy sessions and 3 to 4 days of speech therapy sessions a week and a special diet,” she explains.
