IS THIS REALLY THE WAY TO GO?

There is a popular Ghanaian proverb which literally translates as ‘if you see your neighbor’s beard on fire, you keep water near your beard’. As a country, our leaders seem to think that we are making some headway with the inclusion of persons with disabilities because we have a few policies on our shelves. The last couple of years has seen an increase in the advocacy for persons with disabilities, especially what I call the ‘non-traditional’ disabilities (Down syndrome, Autism, Dyslexia, ADHD, etc). This momentum has seen a lot of political figures making seemingly politically correct statements at public fora (more to earn some political currency). We have also seen the constitution of committees to do one thing or the other for and on behalf of persons with disabilities.

One of such is the Technical Committee put together by the Ministry of Gender, Children and Social Protection in 2018 to review the Persons with Disability Act (715) to comply with United Nations Convention on the Rights of Persons with Disability, by preparing an accompanying legislative instrument for presentation to Parliament (Technical Committee inaugurated to review Persons with Disability Act).

In the last meeting the committee held, apparently the members were divided on a suggestion that a member tabled. This suggestion was to punish parents who ‘neglect’ their children by locking them up. I can understand the rationale behind such a suggestion; it is inhumane to lock up a helpless child while the parent runs errands or goes about daily activities of living… in my opinion, in as much as this may sound good and may even be valid, calls like this should not be made in haste or in the moment of frustration (Why were the women not punished for murder?).

Punishment is defined as ‘the infliction or imposition of a penalty or deprivation as a retribution for a wrongdoing’ (thefreedictionary.com – Jan 30, 2020). The Technical Committee is expected to work with Consultants to be able to deliver on their mandate and I strongly believe that the parents raising children with disabilities fall within this category of consultants. I have been asking myself a lot of questions since I read the article(s);

What form will this punishment take? Will it be the removal of the child with disability from the care of the parent, and to where? The Social Welfare Department or our non-existent shelters? How exactly will this be operationalized? You see, most children with disabilities in Ghana are being raised and cared for in single-parent homes (in my experience and interaction with the special needs community)! These single-parents (mostly mothers), do the very best they can for their children under the circumstances they find themselves in. Will this punishment be extended to the other parent who decided to walk away from the union because of their child with disability?

I personally know parents (again, mostly mothers) who have had to quit their jobs because the many excuses to attend to the needs of their child with a disability had become too much, even for them. I also know parents who have to carry their children with disabilities wherever they go because there was simply no one to care for these children, even if it was just for an hour to enable them to run that important errand. I know a parent who is a petty trader but people will not buy her wares because she has her child with disability with her at the vending point. In order for this resilient mother to provide for her children, she moved shop and now leaves her child home (with food, water and whatever else the young lady will need) and going back home every few hours throughout the day to check on her to ensure she is okay.

Are these the parents we want punished? Isn’t that a bit harsh? Yes, the new law (the final product of this committee) is looking at how to support parents of children with disabilities to effectively take care of their children so the situation where they lock them up will not arise. But…. shouldn’t we focus on getting this new law passed and operational before we call for punishment for parents who regardless of whatever the new law is helping them with are still locking up their children? I feel like we are now putting the cart before the horse by calling for punishment at the same time as as the review and development of the new law. Or?

This whole punishment approach will only work if we have proper data (accurate, up-to-date) on disabilities in this country at all levels of the care continuum for such individuals and if the personnel at the various service points are on top of the basic issues surrounding disabilities and the required care. This can be possible if the required inter-agency collaboration is strengthened right from the sub-district level all the way up to the national.

I am a parent raising my 6 yr old son with Down syndrome. I work full time in addition to the social demands of modern day living. In the last six years, I have had about 10 nannies/caregivers. Some lasting as little as four days, with only one living with us for 2 years. The truth is, it is not easy taking care of our children and because of that, for those who can even afford to get paid help, there is a limited pool of candidates to choose from. Those who claim they want to work, have totally misinformed expectations combined with myths surrounding disabilities in this country, that they do not last and parents have no choice but to let them go.

So far, I have not found myself in the situation that I may have to lock up my son in the room, probably just to step out briefly to buy something nearby, I don’t know what will make that happen but with all that we have been through already, should that ever happen and then I am ‘punished’, for ‘neglecting’ my child, that will be gross misrepresentation of the facts.

The journey of a thousand miles, they say, begins with a step. This Committee and what they have been tasked to do is a step in the right direction but as a mother raising a child with disability, this is just my way of sharing how I feel when I heard this suggestion. Let us tread cautiously on this uncharted road we are proposing.