Charitable Giving

      When we think of charitable giving our thoughts invariably  go to donations to the Cancer Society, the Lung Association, the Alzheimer’s Society, their long-established history gives us confidence as we write a check or put bills and coins in collection  boxes.

What about charitable giving to a single person or family? How do we feel about that? Recent press about the woman who feigned a pregnancy to secure money and goods shocked and saddened even her own husband; her greed could have completely destroyed the desire to give amongst those near and dear to her with her callous behaviour calling into question all manner of other such stories saturating the media about this person or that person ‘in need’; community fund-raisers when someone loses a home is not unusual.

Several years ago, I became aware of a need of a young  boy who lives with his parents and older sister in Tennessee. Young Eli lives with the rarest form of Spina Bifida and was prescribed a ‘specialised’ wheelchair that would significantly improve the quality of his life medically, physically, emotionally, socially, and even academically! Yes, that’s right! Having a specialized chair would stimulate his acquisition of knowledge. No doubt you’re asking why that would be so. Imagine for a moment that you were not able to get up out of your chair and move about, to get a drink of water on your own, to open the door to your home and go outside for a walk down to the park, or wherever it you might want to go. Imagine not being able to do that for 3 years? For ten years. For 60 years! 

Not being able to do those things is Eli’s reality, but he will get closer to having what we so easily take for granted with his ‘superman wheels’; a specialized chair will allow Eli to expand his world and learn. He will be able to interact with peers and do little boy things without his mother tied to him. Having a specialized chair will allow Eli’s mother,  in particular, to spend less time tethered to him and more time meeting her daughter’s needs. As well, as Eli becomes free with mobility, his parents will be less stressed and be able to focus more time and energy on their relationship - nurturing that relationship makes them better parents. So, the wheelchair was not and is not just about Eli and his need for speed!

Initially, a review board under the auspices of one of the social welfare/health programs in the US turned down, denied approval for the chair, saying it was not ‘medically necessary’; his age was held up as one reason. Why then, was young Eli being trained in a chair very similar to the one he needs if he will never have one? That makes no sense. Can that not be viewed as wasting money? Why spend on a kid who’s not going to use the chair? What’s the point? Not seeing the logic in this, I decided to investigate - I’m like that! 

Eli has a presence on Facebook and his story was ‘put out there’ and the response to his need has been huge! What the ever-elusive ‘system’ denied him, the public made happen. The manufacturer slashed a significant amount of  money off the cost of the chair and a public outpouring of support took care of the balance. Eli will get his very own chair; training continues! So taken were the followers of Eli’s journey with what he can be and do with mobility, more things began to happen for the family. A van was gifted to them and it couldn’t have come along at a better time; their vehicle was on its last puff. Unfortunately, the van could not be adapted to accommodate the wheelchair so was surrendered to be donated to another in need. A roadblock? Yes? Insurmountable? No! The fund raiser exceeded expectations and there was sufficient funds to purchase a van that will be adapted to accommodate Eli’s new chair. There’ll be no stopping him now!

Charitable giving isn’t just about the money donated; it’s about how the process of giving brings people together.  Look what a little 3 year old was able to do to the hearts and minds of people who are far older. He touched something in all who got to ‘know’ him, if only in a limited 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 

JOURNEY TO ACCEPTANCE: A TIME OF REFLECTION

From my perspective, people fear that which they do not understand. When the reality of something ‘different’ becomes part of their world, obviously they’re going to have concerns – how do I hold a child who is so tiny and frail? What do I get her for 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 the child’s 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 the child’s 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 will have to 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.

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 counselling 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.

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