Living with severe disabilities in Ghana
Nana Yaa Agyeman

A lot of focus has been given to the disability movement in the last few years, which culminated in the passing of Ghana’s Disability Law (Act 715) in 2006.

The popular refrain now is: Disability is not inability.

Mary, a 40 year old member of Sharecare Ghana, had TM eight years ago with the delivery of her second child. She was paralyzed after her first child and recovered, and no one traced the cause of the paralysis.

Since the birth of her second child, she has been paralyzed from the waist down and has lately been having problems with her eyesight. This tells those of us in the support group that she most likely has NMO, but the doctors are yet to give her a diagnosis.

Her husband deserted her, taking her older child along when the illness started. She now lives with her daughter in what we call in Ghana, a chamber and hall; in a house let out to many different families. But the landlord wants her to move out....

Mary has no care-giver and no income. She and her daughter rely on the benevolence of friends and church members.  Her eight year old daughter makes their breakfast before going to school, and lunch has to wait for her return.

This is the situation - and it is not isolated - that Sharecare Ghana wants to change.  The support group cheers Mary up with periodic visits and members make donations whenever they can. This is neither sustainable, nor is it right.  A society that cares about the vulnerable must have a safety net for people when they are going through such challenges.

Although there is a state funded Department of Social Welfare in Ghana, there are no community workers giving home care to those who have to rely on others for their activities of daily living. A few private care agencies have sprung up, but if like Mary, you cannot pay for their services, then for you, they do not exist.

As a stop gap measure, Sharecare and the School of Social Work in Accra, Ghana’s capital city, are beginning an internship program for students to give home care to members of the group with severe disabilities as part of their curriculum. The school is run by the Department of Social Welfare, but this project is seen as independent and is being financed through our fund raising efforts.

We look forward to a time when no matter the health situation or the disability, every citizen is made to feel like a useful member of the society.  With the situation as it exists now, I keep saying that for some of us, disability is inability.

Nana Yaa Agyeman is The Transverse Myelitis Association support group leader in Ghana.  She established and has been the director of Sharecare Ghana since shortly after she was diagnosed with neuromyelitis optica.  Nana Yaa is such an exceptional human being.  Rather than being focused exclusively on her own medical issues and challenges, she has become an advocate for people who have the rare neuroimmunologic disorders in Ghana.  We had the honor and privilege of meeting Nana Yaa at our symposium in Seattle in 2008.  If you would like to make a donation to support Nana Yaa’s work in Ghana, you can make a donation to The Transverse Myelitis Association and designate your contribution for Sharecare Ghana.  Thank you for supporting this wonderful effort to help people who so desperately need your care.