Special needs parenting is often misunderstood and misrepresented. Because of its lack of visibility, it renders one isolated and weary.
Speaking from experience, advocating for related issues requires extra energy. There’s social stonewalling that has to be overcome on a daily basis, starting from small things such as parking issues, blocking of pavements and access especially in the morning with garbage bags, to dealing with the lack of provision of certain basic services. In the south, for example, there are no government subsidized respite services yet. There are two in Mosta and Mtarfa, but that’s basically it.
The reason why is mind-boggling. Then there are issues with finding a carer, and in situations where there is a speech pathology, the list becomes shorter because of the higher incidence of non-Maltese speaking carers. If a child has trouble understanding mangled English, or the carer doesn’t use Maltese sign language, what should parents do?
The added stress on the parents and the resulting isolation, whether perceived or not, tends to widen any relational hairline crack into a chasm. It’s small wonder that statistically the rate of separation of parents of special needs children is higher than that of other parents. The literature amply points this out – in the United States it is estimated that the divorce rate of parents of a chronically sick or disabled child is as high as 87% of the total number of special needs parents.
The incidence of emotional, verbal and psychological violence on the parents, especially the mothers, has also been stated in the literature. There is a kind of the abuse that comes from the other parent of the child or the family circle in the form of ostracising, or berating the parent from whose side the disability is inherited. Even if it’s not genetic, there is a form of abuse where the targeted parent is punished for being somewhat responsible for the disability.
As a Child Advocate I’ve witnessed instances where the mother-in-law would hint at the grandchild not being related to her side of the family because it doesn’t look like any member of the family, implying that the mother was unfaithful. This is a form of familial alienation that hasn’t been researched as much as it deserves.
I have heard of instances where the grandparents, unable to show off their disabled grandchild especially in public, do their best to ‘normalise’ the child while in their care, believing that they can ‘correct’ and obliviate disability out of their family line by imposing on the child tasks that could not be handled. Or not posting the grandchild’s photos on social media, actively refraining from hugging their grandchild, or openly favouring other grandchildren in the disabled child’s presence.
Another common occurrence is verbal abuse from close family members or friends of the parents that suggest leaving the child in institutional care for the parent to have a carefree life. The most shocking instance I came across is the suggestion of visiting an exorcist to pray over the child and rid the little one of the parents’ sins. These instances have occurred in different socio-economic backgrounds, so it is difficult to generalise or anticipate where it can arise.
In today’s legal definition of domestic violence, such instances would easily fall within the categories outlined in the Istanbul Convention.
Members of my family, including my 85-year-old mother, experienced verbal abuse last year on election day, when a group of Labour supporters stopped by in their car and suggested that they can help with my daughter’s disability. They offered to beat her up, ‘to straighten whatever was not straight’. Repeating it in Maltese is even worse. It’s a pity that they could not be identified by the shocked eyewitnesses as it would have proved a good test case in court.
Economic abuse can take the shape of the stay-at-home parent being deprived of funds or of the basics, such as having one family car which is taken by the other parent solely for one’s own advantage. It can be the lack of cooperation for whatever reason in applying for the disabled parking permit, the disability allowance, car licence exemptions or parking space where there is no garage.
It’s high time that the State offers a service whereby divorcing parents of a disabled child are guided in planning for their child’s future, especially at the mediation stage of separation.
Yesterday’s fund-raising marathon held by the Malta Trust Foundation needs highlighting, as with other foundations that offer such services, as it truly offers financial support to parents. It’s not just the funding itself, but taking care of the whole process of ordering the gadget or equipment on behalf of the parents, that is such a solace.
How a community treats its most vulnerable reflects how civilized it is.