Journey to acceptance: A time of reflection

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

Hidden talents in adversity

Adversity has the effect of eliciting talents which, in prosperous circumstances, would have lain dormant. [Homer]

Approaching my 70th year, I look back on my life and reflect upon where I started and how far I’ve come and have to say that my adversity, such as it is, did, indeed plant the seeds of my talents, wrapped in my tenacity to press on ‘in spite of’.

  My talent for writing, a gift I shared with my late father and uncle, both doctors,  allowed me to take on the role of mentor, early in my growing up and work life and later on, as I moved to the online world, sharing what I know about life and living with disability. My uncle went on to have a successful 2nd career as a newspaper columnist offering medical advice. His columns were later developed into a book; I have a signed copy. Lucky me! 

I was a regular contributor to an international publication on disability, the now defunct Ability Network. In fact, in April of 1997, I was their cover story. OMG, I’m a glossy pin-up girl!

Dad and uncle would be pleased to know that I’ve found a niche online, particularly since aging with cerebral palsy has impacted my ability to move about easily and freely in the day to day, touchy feely real world.

 In today’s internet connected world that links us together in ways that we never could have imagined 20 or 30 years ago, we have opportunity to simultaneously explore many avenues of interest, shifting from one computer screen to another; taking it all in, like a greedy puppy.

With all the technological advancements that enhance learning opportunities, why do so many still struggle? Talent and tenacity isn’t always enough. And so enters mentoring. Someone who believes in what you can do and is willing to share what they’ve learned on their own journey so that yours may be easier. 

Simply put, many students, young or old, rely on people power to enrich their learning process.  Joining with one or two, three or four people not only allows for sharing ideas to organize thoughtful study, it’s a way to network to establish other relationships that may be more social in nature. Aligning with another who’s been there, done that is one of the best ways to ensure that what you’re diving into is going to stick. Social interactions are critical to development, from cradle to grave. 

Mentoring men and women of any age who need a guiding hand is a way that those who have talents to share are able to do so with the knowledge that they are lifting up others to a more level playing field. That is always a good thing. The beauty of it is that, over time, there’s a reciprocity as students become teachers and coach others in skills needed to advance in school or in the workplace.
Families living on the financial fringes trying to raise children through the various ages and stages of development and education very often struggle with the cost of it all. Joining forces with a mentor or two is a way for them to keep up with less physical and emotional strain, which is so draining on a family’s resources in the long term and makes the jobs of Mom and Dad more challenging.

Mentoring has no specific age requirement but it reasons that pre-potty trained  toddlers aren’t quite up to the challenge, though some would have a go at teaching a playmate how to make chocolate milk. Get out the video camera.

Children who come into the world with any sort of impediment or challenge to daily living and inclusion, however developed, have to be guided carefully if an intact intellect is present so that they can become students, however adept, of a range of disciplines, whether it’s colouring, weaving, learning to type, telling stories. The processes of ‘getting there’ are unique to the individual and teachers must step back, wait and watch to see what happens. 

Within a group of youngsters, there will be one or two or three who will quite naturally step into the role of mentor. Let them. That’s their own learning at work. All manner of skills are learned in an environment that’s not particularly structured. That, alone, makes the steps more easily remembered and put into action the next time. 

Children with disability are presented with many opportunities for inclusion that are compatible with their situations so that they are able to experience even a modicum of success without fear of failure. Feelings of insecurity often weigh particularly heavily on children who struggle to find their place in a peer group; for some, who have the gift of language, mentoring becomes easier as confidence grows. Leading reading groups is often a great place to start. Teachers and other adults in their world should encourage after school reading circles. It’s a great way to expand social circles outside of the classroom and it takes the pressure off the struggling reader as he expands his portfolio of talents. Talents that will carry him through his academic career and beyond. Community theatre is another avenue that children with challenges can explore. 

So many opportunities are available today that weren’t even thought of when I was in grade school. Endless possibilities for multiple opportunities. 

Get out there and make your own mark.

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