People often fear what they don’t understand. When the reality of something ‘different’ becomes part of their world, they’re going to have concerns – how do I hold a child who is so tiny and frail? What do I get her for her birthday? Christmas? – she can’t hold a doll. She can’t play with a bake set. He’ll never bat a ball or stand on a skateboard; so many experiences never to be realized. What must be remembered is that there will be other albeit different experiences.
Focusing on child-typical pursuits is not always the way to go. Look to what might hold interest if there is a good deal of high functioning intellect and awareness in the absence of fine or gross motor skills.
Very often, children with deficiencies to mobility are doubly blessed when it comes to intellect – when a door closes, several windows open. Depending on the degree of limitation, there are numerous opportunities in spite of disability, or as I often have said, because of disability.
As time passes and limitations become more evident, parents must accept that part of themselves that is always going to be ON with regard to how others treat their differently able child; ready to do battle with those who say unkind things, mock and stare. For the child who is intellectually intact and verbal, he will hopefully develop a shell to the slings and arrows of life while not growing hard and cynical or feeling entitled. Rather, he will begin to realize that as much as he is a curiosity to others, he is also a lesson. Parents must accept that people will stare; some will glare, others will point.
In the adult, from my perspective, it’s rude; in the able-bodied child, it is simple curiosity and they’re at the age where they can be educated. Empathy building tools are perfect examples of positive teaching with youngsters, as those tools will be carried with them for the rest of their lives.
It heartens me to see children unreservedly interact with youngsters who will never be able to participate the same way they do. That level of awareness at such a young age is testament to what’s starting to become important to them. Don’t interrupt that developmental milestone by imposing your own beliefs. You’re already grown up!
Accepting ourselves, disability or not, allows us to accept others. We can learn much by really listening and really hearing both what is said and what is not said; we can also learn much by being still and observing. Listening and observing are often well developed skills of the intellectually intact person with since birth limitation to mobility – tools of the trade of life, as it were. Those who acquire late onset disability such as paralysis due to accident or illness or some other disabling condition or disease that impacts quality of life must face an array of challenges, notably a challenge to a particular belief system they held prior to joining the ranks of those with limitations to daily living.
Those who must live with adult-onset disability have to redefine their emotional and spiritual ‘selves’ to mesh with a new physical ‘self’ that will be presented to the world at large. For some, it comes easily while for others, living on the other side, as it were, is a trauma from which they may never recover, often with thoughts of suicide clouding their judgment.
Sadly, some succeed in freeing themselves from their personal pain, leaving family and friends questioning ‘God’s Will’, ‘the unfairness of life’, ‘this should never have happened’.
Though I have not investigated current statistics surrounding suicides amongst the disabled, since birth and others, I suspect that the numbers are not as high as they would be in other populations, though assisted suicide may figure strongly into the calculations, particularly with those not just in physical crisis, but also those in emotional and financial crisis as they cope with the impact of disability. It is for those people that counseling would be critical to bring them back into a mindset that allows them to accept that they do have purpose; can, indeed, have a life worth living.
Having opportunity to interact with those who have lived with since-birth disability allows those new to life as a person with limitations an opportunity to see that there is life beyond use of arms, legs or both. Acceptance is appreciating all that one has without the physicality of the body. Acceptance forces us to reach deep inside ourselves for a resolve that tells the world that we will survive – that our living of life though physically taxing and emotionally stressful will not be without joys and successes. Our joy comes from realizing that we really are of value, that we really do matter. Most importantly it is necessary for us to matter to ourselves so that we can sift through the stuff of us and find a recipe that will develop into something delicious and filling to those who join us in celebrating ourselves.
As summer approaches and schools will be going on break, persons with challenges to inclusion in daily living will be out and about, finally free of the restrictions winter weather has imposed. The cloud of ‘winter blues’ will have lifted and we are free to live and learn in community with men andwomen who will teach us as we teach them.
Carla MacInnis Rockwell is a freelance writer and disability rights advocate living outside Fredericton, NB with Miss Lexie, a rambunctious Maltese and Mr. Malcolm, a boisterous Havanese. She can be reached via email at: Carla MacInnis Rockwell
No comments:
Post a Comment