In some cultures, persons with disabilities were held up as god-like entities, living with the comfort and care of their own family until the end of their days. While still in university, engaged in one of many dining table conversations, I was told that in Aboriginal Indian culture, as example, an infant born with disability was tested; left overnight in the woods unattended. If the infant survived, he was brought back into the tribe and treated as a King of sorts, to be revered. Everything was done to ensure quality of life from that day forward.
I grew up in a home with many creature comforts and it was and is never lost on me how very fortunate I was and am. Though spastic diplegic cerebral palsy did not compromise my intellect, it did affect how I move. I grew up before inclusion was the norm, particularly in the school system. I simply attended school because all the other children did.
This is a critical lesson that must be learned by parents raising a child with disability who may have difficulty being accepted outside the security of the family bubble. Parents need to accept that they are not perfect and that their child is not perfect. With time and its life lessons, parent and child will blend together and work almost seamlessly as they travel the maze-filled path of life, however long. Days, months or years, with the profoundly neurologically disabled child are gifts not givens.
Early on, parents of a child with disability have to accept that their child’s ‘uniqueness’ will be a curiosity to others, even those within the family dynamic. As a parent, you cannot make other children like your child with challenges; that liking has to come naturally and from a place within the able-bodied child that allows him to choose freely to like or not like, no matter the reason. The assumption cannot always be made that a child with disability is not liked, not included, not noticed because he lives with disability. It may be possible, if his disabling condition is mild/barely discernible, that he’s simply not an easy child to like, regardless of a ‘special circumstance’. There is nothing worse than a spoiled child, particularly if they grow into teenagers, young adults, and older adults, posturing with the same sense of entitlement they had as children; a sense of entitlement that may have unwittingly been fostered by parents who over-indulged. We do, indeed, reap what we sow -- it is critical, then, that the child with disability not be excused simply because he has certain limitations. That does him a disservice and it does those around him a disservice because they always have to be on guard. If a child is to be accepted, he must learn that the world at large does not revolve around him because he is differently able. Parents of such a child must accept that as well so that they can parent effectively; after all, parents aren’t going to always be available for guidance once the child establishes independence.
Over the past several years I’ve participated in various health/wellness/disability/aging with disability related groups on the internet and it always saddens me when I’d read messages from parents who report that their own parents and other family members were not accepting of a child with a since-birth disability – grandparents and other family members avoided spending time with the neurologically challenged child, excluding that child from outings with siblings, or if included, apologizing to strangers for the child’s ‘problems’. Perhaps their reaction/response to their ‘special needs’ grandchild is a function of the time in which they grew up and during that period when they parented their own children. Can they really be faulted? I don’t think so. They can, however, be educated – guided to think in a different way, a more positive, life-affirming way.
Carla MacInnis Rockwell is a freelance writer and disability rights advocate living outside Fredericton, NB with her aging Australian silky terrier and a rambunctious Maltese. She can be reached via email at carmacrockwell@xplornet.ca
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