Accepting and celebrating ourselves

And what I assume you shall assume. 

[Walt Whitman Ib. Song of Myself, 1]

As one who lives with disability, accepting myself, warts and all was immediate, there was no choice – to coin the title of a currently popular song – I was  “Born This Way”. As well, I felt fully accepted growing up with my parents and 7 siblings; they had no choice either – we were all going to experience my ‘different’ness together.  Through my years as a counsellor and a writer, I have met many persons with disability of my era and beyond, all having expressed the same sentiment – for the most part, familial acceptance was a given, though some relatives struggled, also a given. It was the learning to celebrate ourselves beyond the family that was the challenge. Some thrived while others did not, as the demons of self-doubt and sometimes self-loathing grabbed them and took them under. A sad reality of living in a world where perceived perfection is the ‘prize’ of acceptance.

Accepting ourselves is often the first choice we must make if we are to grow --- healthy and happy and strong.  As infants, those of us with since birth disabling conditions knew nothing else, so we had nothing to compare to with regard to how our differentness/differences would be viewed by those who do not possess or live with those differences. As our awareness of ourselves develops so, too, does our awareness of how others perceive us --- good, bad, or indifferent. Not unlike how able-bodied people are perceived as they grow and move beyond the family to the larger community to take their place. 

We must not make the mistake of having our disability mean more to us than our other more valuable traits should mean. Parents need to let go of the Madison Avenue driven notion of ‘perfection’ and, along with their child with disability, venture out into the world not necessarily armed to do battle but to take their place and show that ‘can do’ will define life and living. The ‘can do’ might take longer and might be out of the ordinary in terms of execution, but it is no less important than any accomplishment of an able-bodied person. 

It is most assuredly not a given that a person with disability, whether born with it or acquiring it later in life, will always be accepting of their lot in life. To say I never minded or was never bothered by being born with a disability would be a grotesque lie. Certainly, as with any toddler, I wasn’t terribly aware of the concept of ‘acceptance, as I lived within the safe cocoon of the family dynamic. Crawling or stepping outside the safety sphere that included  mother, father, brothers and sisters paved the way to acceptance by those who would be come playmates, schoolmates, friends, boyfriends, and a husband. I can say, however, that my acceptance grew as my life experiences expanded so that I was able to appreciate that wobbly, scrawny, weakened legs would not be what defined the substance of me, as a person, as a woman.

My faltering steps to acceptance were due in large measure to how I perceived myself in relation to able-bodied peers; to be clear, I was never blatantly excluded as a youngster, but at times, I didn’t feel particularly ‘in’cluded, and my apprehensions were magnified once I became a teenager when how we looked mattered; as shallow as that may seem, that’s the reality of the teenager.  Appearance was everything to the teenage girl – or so we girls thought. Teenage angst aside, in my choosing to forever and always accept the body, the shell that housed the stuff of me, others were more at ease accepting me --- a choice they freely made unconstrained by the opinions and attitudes of their elders – in accepting me, they accepted their own flaws. 

In Western culture, elders being obviously of a  different time held the view that people ‘like them’ (me) were to be pitied, or shut away from view – institutionalized, and often not living beyond the age of five years. In days gone by, it wasn’t uncommon to ‘warehouse’ people with the type of neurological impairment (hate that word) I have; very often in State run mental hospitals where care and contact was minimal at best. . What killed the institutionalised child was not a progression of condition, since cerebral palsy is not a disease, but the lack of socialization -- isolation/deprivation of human contact does, indeed, kill. A broken spirit becomes a deadened spirit. In not invigorating the spirit, the mind, the body and the soul, life becomes untenable. Even the profoundly disabled can be stimulated in one way or another. Ask any parent who raises such a child and they will be quick to tell you that though their child may not hear, may not see, may not seem to comprehend, on some primitive level, even the most intellectually ‘damaged’ person has an awareness. Therein lies the major lesson for everyone – celebrate and accept the life that is, not the life that parents thought their child was supposed to have or hoped their child would have. To paraphrase Popeye – ‘I is what I is!’ 

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 

Deciding on death

Watching a peaceful death of a human being reminds us of a falling star; one of a million lights in a vast sky that flares up for a brief moment only to disappear into the endless night forever [Elisabeth Kubler-Ross]

On 6 February 2015 the landscape of life and living forever changed in Canada with the Supreme Court’s unanimous decision on assisted suicide, whereby doctors may lawfully help competent adults, who are grievously ill and effectively if not ‘actively’ dying, to end their lives. What does this legislation mean for and to since-birth children and adults who are in the care and custody of parents who fully believe, in good conscience, that their loved one would ‘want this’; this being a peaceful/gentle death? Will the Supreme Court’s decision unwittingly open a Pandora’s Box?

I’ll never enter into a full-blown debate on euthanasia or assisted suicide not because I live with disability and the thought of someone else determining my ‘value’ and my life’s  ‘quality’ is abhorrent to me, but because I firmly believe that no matter how profound the deficiencies to the physical body, there is still something ‘in there’ that drives it. With that, exists LIFE.

16x9, a program on Global Television here in Canada, delivering in a documentary format, presented on  8 March 2012,  an episode entitled Taking Mercy. It explored the murky depths of the right to die/euthanasia debate, featuring two cases; first, that of Annette Corriveau, the mother of Janet and Jeffrey who have lived the past few decades in a care facility as their bodies and minds are ravaged by a deterioration caused by the genetic disorder, Sanfilippo Syndrome – there is no cure and there is no treatment.

The second was that of Robert Latimer, who, convicted of murdering his daughter, Tracy, served 10 years in prison for that crime; in my view, a crime against humanity.  The medical profiles of the Corriveau children, now adults because they are still alive, are vastly different than that of Tracy Latimer. We’ll never know what ‘could have been’ for her because her father, for whatever REALLY motivated him, denied her life and living. Had he waited and watched, as so many parents of children who are neurologically insulted with cerebral palsy do, he might have been the beneficiary of a lovely gift; the gift of a daughter who would learn to ‘speak’, to communicate. She could have gone from the ‘awareness’ of a 4 month old to becoming more part of her world with the intellect and aptitude of an 8 year old, though possibly without the power of speech as we know speech to be. There are other ways of communicating. Robert Latimer denied his daughter those ‘other ways’. If he’d only waited! Where was the mother’s love during all of this? Was she afraid to give voice to her own fears and anxieties? We’ll never know.

Brain researchers are increasingly confirming what auto-insurance actuaries have long known - the powers of decision-making, especially under stress, don't fully mature in most people until they are in their mid-20s.

Copious sophisticated imaging studies and other research show that the frontal lobe of the brain - the part involved in judgment, organization, planning and strategizing - gets all its gray matter by age 11 or 12. But the myriad connections from the frontal part aren't completely wired to function like an adult for at least another decade. Imaging studies also suggest that because the braking system of the frontal lobe is still developing, signals from the primal emotions in the brain tend to get the upper hand. 

This is where I take issue with the actions of Robert Latimer when HE decided that his daughter’s pain was intractable and that death is what she would have wanted. Did the medical community say or suggest to him that things ‘may’ improve? With time, would his child have had more developmental function as the brain matured? Did the specialists in the medical community encourage him and his wife to WAIT?  They were told that a surgical procedure on her hips would relieve pain and possibly improve things. Her father was opposed. Was the mother opposed? As mentioned, Tracy was said to have had the mental age of a 4 month old at  the chronological age of 12 years. Where would her ‘mental’ age have been had she been ALLOWED to live 10 more years? Had Robert Latimer waited, and his wife intervened to ensure he waited, his child may be still alive today, albeit still with the mind of a child who would require a parent or other adult to provide daily care, or be placed in the hands of the province and cared for by professionals trained to meet the daily demands of looking after a child like Tracy. With that, she might have become a child who could be taught to read, to communicate; to articulate, even with mechanical means, her feelings, her intentions, her wants, her needs. Her father, through his actions, robbed her of that and set the stage for a debate when there clearly shouldn’t have been one. The value of Tracy’s life was determined by someone who acted because the value of his own life was being impinged upon by her very existence. If he were to be honest, he’d admit that. I would so love to have a face to face with him, and invite him to look me in the eyes, a 58 year old woman aging with cerebral palsy, and tell me that he still feels he did the right thing.

For Annette Corriveau, Janet and Jeffrey will forever be her babies. Living in adult bodies now, they are thought to have no awareness of what is going on around them, yet she plodded along with them, for them, into their adulthood, into a time when they should be married, with careers, with families of their own, giving her what parents of adult children look forward to – grandchildren. There’ll be none of that for Annette Corriveau, but she still has her babies. Robert Latimer has Tracy no more because he denied her. Sadder still is that he denied himself.

Annette Corriveau is clearly physically, mentally and emotionally exhausted yet she still has a strong connection to her children because she doesn’t know what to do without suffering the wrath of the public. She wants to let them ‘die with dignity’; but allowed to die. The Janet and Jeffrey she once knew were lost to her years ago, yet today, they live, they breathe; they’re in this world, but at what cost? Their mother feels their time with her and those who love them should come to an end, not because SHE wants to be free of them so much as she has had decades to watch a decline, that had there been an awareness of the inevitable, her children would have perhaps articulated a clear intent of their wishes. Alas, it’s too late for that. They cannot be asked what they want. 

Annette Corriveau’s situation with her children differs from that of Robert Latimer with his daughter; she had a knowing of happy, engaged children who were healthy until the decline and diagnosis manifested and the outcome would change lives forever; she chose to press on, one moment, one day at a time; year after year. Robert Latimer, on the other hand, from my perspective and what I’ve read of his case, chose to cut his losses and run. The fact that he initially lied about his part in the death of his daughter is very telling, and in some measure, the outcome may well have turned on that point. But my purpose here is not to revisit the legal component of what he did, as it is clear and the Supreme Court ruling articulates it ---  he did KILL his child. He was also found guilty of rape in 1974, but got off on a technicality. Clearly, a person of  long-standing questionable character.

To reiterate, had Tracy Latimer been granted years of life that allowed her brain to reach maturity, as medical literature suggests doesn’t occur until a person is in their 20s, it is possible that she could have contributed some fabulous things to her world, to our world. She was denied. The type of cerebral palsy with which she lived put her at no risk of imminent death. According to reports, she was happy, smiling and as engaged as she could have been given her deficits of awareness. Would length of years have reduced her pain? Possibly. Would length of years have enhanced her mental acuity? Based on what I’ve learned through participation on various boards devoted to parents raising children with cerebral palsy, I can say yes. I’ve read numerous anecdotes over the years that support the claim that children with profound cerebral palsy CAN and DO improve with age and maturity as the brain is allowed to progress naturally and connections that didn’t exist at 4 months are present and functioning at 1 year, 2 years, 4 years and so on. I am testament to that with regard to my ability to have learned how to walk, though it took considerable time. Walking is a milestone that infants and toddlers are expected to reach at a certain age. For me, walking was a learned behaviour, patterned through years of physiotherapy. I still walk.

So we have Janet and Jeffrey, trapped in bodies battered by a genetic disorder that robbed them of a childhood and an adulthood and all that came in between, loved by a mother who is stuck. Then there was Tracy Latimer who is lost to her family because of a single act of  by someone I personally have concluded was and is a very selfish man who shouldn’t call himself Dad. If that appears harsh, so be it. 

My foray into this contentious topic takes a turn – on a personal note, my eldest sister lived with, among myriad disabilities, Progressive Supranuclear Palsy, a brain wasting disease that destroyed 80 of her brain matter. For two decades she did battle with Rheumatoid Arthritis, followed by Lupus; as well, she was a double-lung transplant survivor.

She spent several weeks in the palliative care unit of the hospital near where she lived in Ontario.  The sister who dressed me when I was a toddler, watched and learned how to put braces on my legs was lost to me. The sister who pedalled my legs in the bath to exercise them so I could learn to walk, herself no longer walked. There were no conversations with her. The sister who visited me in summer rehab and brought me the latest popular children’s books lost the ability to read. Yet she lived on. The sister who taught me how to cook this and bake that lost the recollection of what food tastes like and had to be fed by others. Yet she lived. She breathed. 

My sister was made comfortable but her death was not to be hastened at the hands of another. I suspect that there were no heroic measures taken to prolong life. It’s a fool’s game to wonder what she might have wanted. What she might have chosen for herself had she been able, with full cognition.

Annette Corriveau’s adult children live, but in bodies that ceased to do what they were intended to do long before they got to fully enjoy life and all that being in and of the world entailed. Tracy Latimer lived for 12 years in a body that was twisted and pained by profound cerebral palsy of the quadriplegic variety, with the intellect of a 4 month old infant at the time of her passing; she died at the hands of another. 

My sister lived a full, productive and engaged life for close to 64 years and for the last few, she lived, unaware of anything around her. Blissfully oblivious? Cycling with periods of lucidity but unable to articulate intention or to act upon it? The tragedy was not so much with her medical status, but with the fact that those of us around her, near and dear to her, were helpless as we could not act to relieve her, to free her of the hell that has become her life. That is the same hell Annette Corriveau lives in as the mother wanting to free her children. 

Were she alive, existing/living today, would my sister have a right to choose death given her mental status? Would the blinking of an eye constitute an understanding of a question put to a patient in like circumstance? Could a physician alone deliver the end with spousal/family consent in the absence of individual consent?  Thankfully, my sister didn’t live long enough to to be stressed/agitated by such a decision. Her life ended on 6 October 2012. Quietly, she simply slipped away. An entity beyond any of us mere mortals decided for all of us, including her.

Annette Corriveau cannot choose death for her children because in this country that constitutes murder. Robert Latimer  has already been down that road and was vilified for his actions. Parents killing their children has no justification under any circumstance. Janet and Jeffery Corriveau are, at law, adults. Will that be the point at law that might make a difference? Will the fact that they are of  legal age be a way that their mother can help them ‘help themselves’? 

Deciding on death – what we, as thinking, feeling human beings choose to do with our own body is our right. The slippery slope is whether those rights should be granted to parents, case by case, within the legal framework, when it comes to deciding death for the profoundly disabled adult child whose ‘quality of life’ has no quality as we traditionally know ‘quality of life’ to be. For myself, I don’t expect it can in any way be likened to ‘open season’ on persons with disability. At issue is protecting the lives of minor children who lack articulation of intent/wish/desire.

Revisiting the Terri Schiavo case and Jack Kevorkian’s notoriety as Dr. Death only serve to inflame. Often it is s/he who is totally and fully physically healthy and well who screams the loudest with regard to issues of right to die. From my perspective, and from what I have observed and learned over my 60 years of living in an ‘im’perfect body is that the able-bodied simply cannot imagine ‘it’. They’re always going to speak from a position of sound body. What they miss the boat on is when the mind is not sound. My body will never define who and what I can be. It is my mind and my intellect and my ability to reason that drive me, propel me onward, giving me the strength to cope with a body that is failing me. Should I find myself in a position where my mind is failing as the body goes into greater decline,  I expect I’ll develop a plan to ensure that no one else but I decide my fate. I can only hope that Annette Corriveau and her children find peace. 

I, for one, applaud the decision of the Supreme Court as it breathes a different sort of air into the freedom of choice. The trick will be whether we decide to inhale deeply and take in what this means for us, as individuals, today and in the future,or whether exhale with a ferocity that lets everyone know we will never agree with ‘murder’. Discussions and debate will rage on with or without us.

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 

IN SICKNESS AND IN HEALTH

Of late, one of the major ‘talking points’ with parents of children with disability has been concerns with regard to caregiver burn-out. The phrase “in sickness and health” has no more significance than when it is put into practice, not just spouse to spouse, but parent to child. Put into practice not just through a bout of flu or recovery from a surgical procedure or other such malady, but for the long haul - often for life!

Since my personal experience has been that of living since birth with cerebral palsy, I have an acute awareness of what parents, particularly mothers go through on a daily basis — for days, month, years, decades;  sometimes, until the death of the child who may or may not to live into adulthood. My mother readily and without complaint, at least not much, charged herself with my daily therapies - lots and lots of it. There is no question she experienced cycles of burn-out but she kept on going. She ‘had’ to - there were 7 others who required her care and attention. I cannot imagine how life must have been for her. Now that I’m a ‘big kid’ I am able to reflect on those times and fully appreciate what she did and what she sacrificed in the doing.

Historically, the mother has been the nurturer and nowhere is this more evident than with the mother whose role has become layered with the learning of skills that go far beyond that which is often the ‘typical’ for new Moms. Caring for a medically fragile child is physically, emotionally, mentally exhausting. For some, it can be spirit-breaking and they are forced to make the difficult decision to surrender their child to the care of another (specialised foster care, group home care, nursing home care).

Those who are challenged from the moment they first draw breath rely immediately on a medical team to keep their bodies alive, but it is Mom who is the backbone of the whole scene and often goes for days without rest. She takes this nurturing/nursing/caregiving task away from the clinical setting and goes home with her baby who will never in his lifetime be independent of her and others threaded through the family dynamic. She asks for help and many hands are available — at least in the early days, weeks and months. Over time, the hands of both family and friends slip away. They don’t have time. They lose interest. They are embarrassed by their own healthy children and distance themselves. Alas, that does not change the fact that Mom still needs help and will always need help for HERSELF. She helps her child, but who helps her? 

Government funding agencies support a range of goods and services for a child with disability, but what is available for the caregiver, for Mom, the nurturer? Imagine for a moment moving 90-100+ pounds of ‘dead’ weight around from point A to B, not just once or twice a day, but several times a day! This is the routine of thousands of mothers and other caregivers, day in and day out, month after month, year after year! The human body was NOT meant to do that! The government needs to finally wake up and address the REAL needs of caregivers and not make it so difficult access to therapies and aides that will HELP them HELP their child.  A therapy tub might seem a luxury, but for a physically exhausted caregiver, it most assuredly is a NECESSITY. A one-time acquisition that will go a long way to ensuring Mom can keep on keepin’ on. Then there’s weekly massage that would relieve those aching muscles that are stressed beyond all imagination. 

Jumping through bureaucratic hoops is not something to which they should be subjected; that is a huge slap in the face when their at home care of their child with disability is saving the government purse thousands upon thousands of dollars a year. Compare that to the cost associated with a few ‘Mom specific’ therapy/health/wellness devices. It’s a drop in the bucket. It’s about time the government stopped raining on the parade and instead showered families in need, families in crisis, with the things that they truly should have and deserve to have to enhance the quality of THEIR lives, as parents/caregivers. After a much needed rain, the sun comes out again and a new day begins. If you’re a caregiver on the edge of that burn-out cliff, don’t be afraid to make ‘the call’. Shaking up the system may well be part of waking up the system.

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 

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 

If these walls could talk

In my infancy, toddlerhood, and pre-teen years everything about my day, from my rising in the morning to my going to bed at night was orchestrated by my mother; very rarely, my father, as he was busy practicing medicine (when are the ever-elusive ‘they’ going to get it right!). 

 From the clothes I wore, to what I ate for breakfast, nap time, play time, going to church and going to school, my mother was ever-present. A big part of my childhood, while growing up with 7 brothers and sisters was ... exercise aka therapy aka "I hate it!" Again, the Mom factor. There would be no escape for thirteen years or so. As a small child, living with cerebral palsy required not only the wearing of orthotics and using crutches, it also involved a lot of pulling, pushing, and stretching of my legs, as they bore the brunt of the effects of  spastic diplegic cerebral palsy (one of the lesser forms of this fixed neurological condition). 

What follows examines all those exercises that were "done" to me, as I was not able to exercise independently. My mother tried to get in 4 sessions daily – quite a feat considering she was caring for 7 other children, though the older ones were pretty much able to look after themselves.

Should  you parents of similarly neurologically insulted children wish to apply this regimen in your own child’s routine, I encourage you to consult with your  attending physiatrist or physiotherapist for approval. Though the exercises involve basic movement/manipulation of spastic limbs, it would be important to confirm that what was utilized with me will be appropriate for your child.  It was the rigorous, four times a day protocols that got me on my feet and kept me on my feet for almost 57 years. It’s thought by some in the local medical community that I may well be the oldest uprightly mobile and still moving spastic diplegic in Canada. 

To avoid unnecessary repetition, I 'd like to point out that each exercise was done in sets of 10. As I grew older, a few other exercises were introduced; ones that I could do independently ... like using a rowing machine to strengthen back muscles, riding a stationery bicycle to tone leg muscles;  with time, I would eventually learn to skip rope and ride a two-wheeler :)

But for now, let's get fit!  Crank up some tunes to create a rhythm. These exercises are essentially for the cognitively aware child who can respond to instructions as required. But ... they can be modified as needed to meet the needs of the child who is more involved. 

1) With the child lying on his back with a small pillow under the head, Mom or other "therapist" raises the left leg, placing one hand over the knee to keep it straight, and the palm of the hand on the sole of the child's foot. Raise gently until slight resistance is met (don't force beyond the child's comfort zone ... that will come with time). Hold to a count of 10, and lower slowly. Repeat 9 more times :) Then do the right leg. If the legs tend to scissor, put a wedge between them, so that the free leg doesn't interfere with the one being exercised. This up-down exercise would help promote arm tone/strength if they're involved. Explore what feels right to you as you work with your child. 

2)  With the child still on his back, and the wedge between the legs, bend the leg, and gently push the knee towards the chest. Place your palm under the child's foot to stabilize as you gently push the leg into the chest. Ideally, a second pair of hands is handy to restrain the free leg to make the exercise more effective. Again, don't go beyond the child's comfort zone. As he becomes more "flexible" range of motion will increase. Repeat for the other leg. I'm sure this exercise could be adapted for the upper body if involved. 

3)  With the child on his side, aligning body as straight as possible, raise the leg up, then, forward and then backwards, coming towards yourself as you work from behind the child. Again, use a wedge if spasticity/scissoring is an issue. Repeat for the other leg. 

4)  With the child still on his side, with wedge in place, bend the leg at the knee until the toe touches the buttocks. Again, do not go beyond the child's range of motion. Pushing beyond his physical limits is almost as bad as not exercising him at all. It will only elevate spasticity. 

5) Prop the child, if old enough up against a sofa or other solid piece of furniture. Observe to see if he can balance himself - prop/guide with your hands when necessary. Use verbal cues to guide the child as he attempts to maintain a seated balance. Straighten upper body as required. All the other exercises, over time, will develop back and trunk strength to ensure improvements with sitting posture. Soon, he'll be ready for standing and stepping.Over time, introduce objects for him to reach for, and encourage him to return to the upright seated position. This exercise is also developing eye-hand co-ordination. Helpful when he graduates to sandbox play. 

6)  With the child on his stomach, again with wedge if required, bend the leg til the toe touches the buttocks. Repeat with other leg. 

7)  Return the child to the on the back position and gently massage the legs. Return him to his orthotics. if applicable. Now, wasn't that easy :) 

These exercises can be repeated after dinner, before bed, either a group of them, or all of them, perhaps for 5 times each, followed by a warm bath.  Over time, you can introduce other exercises to the regimen. Sit-ups are good. Holding the child's legs down with one hand, allow him to use your other hand /forearm to pull himself up to a sitting position, as far as he is able. Lower him gently on his back. Repeat 10 times. Follow that with what I call cat stretching. Position the child on his knees, and have him arch his back, if he is able. If not, continue to work on the other sets of exercises til he develops that ability (if he's meant to).

 Hydrotherapy (think swimming!) is another great exercise. Range of motion is broader for exercises done in water. Besides, water is relaxing. If you don't have a pool at home, ask the manager of the community pool to consider raising the temperature to accommodate mobility disabled people. Perhaps an organized swim afternoon might be something to consider to ensure that everyone who is able can participate. 

As the child matures, you will introduce other exercises that will develop muscle control for standing/stepping. Stand the child up in front of you, and push his feet, one in front of the other, with your feet. You're patterning the "walking" . Do this one a couple of times throughout the day. If the child is cognitively aware, remind him to keep his heels on the floor and avoid toe-walking. Token economy is a good tool for eliciting favorable responses. If the child is able, introduce him to a walker early. Or, if he is less involved, a small table he can push around is useful. Serves also as a great place for him to gather his play gear to move from place to place :) Something that has a raised edge so stuff doesn't slide off is convenient. As his walking/stepping ability improves, encourage him to walk on his own in the house, using furniture or walls as "touch spots" for balance. Over time, encourage him to concentrate on less wall/furniture touching, looking straight ahead and moving his feet, one in front of the other. Stress the importance of not watching his feet. An upright posture will improve spine strength.

Carla MacInnis Rockwell is a freelance writer and disability rights advocate living outside Fredericton, NB with her geriatric Australian silky terrier and a rambunctious Maltese. She can be reached via email at carmacrockwell@xplornet.ca

What I learned from my sister

In Memory of Helen Maureen (MacInnis) Scott

31 December 1944 - 12 October 2012

Anne with an e! Maureen with two! Maureen was 10 years old when I was born. On the 18^th of May, 1954, she found herself presented with another sister; a sister who would be unlike the one she already had and unlike herself in a few unique ways. With the passage of time, the elder would teach the younger about the value of the E – empathy, endurance, energy, empowerment, and -- elegance. My sister, as she grew into a young woman, developed a quiet elegance, very much like that our mother had in abundance.

Maureen, as pack leader, had a lot of endurance to put up with rambunctious younger siblings – David, Ian, Nola, Roddy, Robert, me, and Michael who probably drove her to distraction; though Michael and I probably not so much since he was an infant and I was 3ish when he was born. How much trouble could the two youngest possibly be? My sister was an energetic force on the basketball court in high school, captain of the team, a friend to all who knew her and in her later years, I called her a social butterfly; with her easy manner, people gravitated to her. No doubt, during her school days, lots of guys had crushes on her when she was a junior and then a senior, but the man she ultimately married was a perfect match in so many ways. She was very pretty, but more importantly, my sister was a very nice person. What I’ll always remember is that she always made time for us, mostly for my younger brother, Michael, and me. She was rather like a mini-mother, especially for our brother. When she was in high school and dating, she took me and Michael on a few car dates – to the drive-in – with sleeping bags and snacks. Memories were created for us three on those occasions. Then there were the hamburgers and fries at Howard’s restaurant, and the ice cream cones.

It was the summer of 1966 – on the14th of May of that year, my sister got married and at the age of almost 12, I got to wear my first ‘real’ pair of shoes; on her day, I would be free of the below-the-knee orthotics (heavy metal braces) and ugly brown boots. She insisted! How grown-up and special I felt wearing those black patent leather shoes that were chosen, no doubt with guidance from Mom. I also remember the dress that Maureen and I picked out together at Marich’s clothing store; blue with white dots. May 14^th held additional significance for our family; it was also Mom’s birthday. I can’t recall if there were two cakes, though if there was a birthday cake for Mom, Maureen probably baked it. Nothing like baking a birthday cake the day before you’re to get married. It’s possible, however, that our middle sister, Nola baked the cake. She was and is a great baker, but I have to say Maureen was probably the best of us all. There was to be a third cake – one for my brother Roddy and me as we had birthdays close together, his on the 13^th of May, 5 days before my own. I don’t recall ever having a cake on my own special day; that’s what sometimes happens in a large family with many children who have birthdays in the same month, or within weeks or days of each other. An economy of time and energy was necessary if Mom was to maintain sanity.

A few months after Maureen got married, I would be out of school for the summer and about to go on a new journey; an adventure. I would be taken to a rehabilitation centre for intensive therapy as in-patient, mostly physical therapy on my legs. For years, our mother spent time each day working on my legs, with my legs. Maureen and some of the others did their bit, too. I’d like to think that having me as a baby sister taught them all a few things about a few things ☺

It was Maureen who, during her first year of marriage, over the period of hot summer months, introduced me to Anne with an E. Anne of Green Gables, the first in a series of books that she brought to me while I being held hostage, having my legs pulled and stretched this way and that, at the Forest Hill Centre for Rehabilitation (since re-named). The FHCR was in the same city where my sister and her new husband were to live, Fredericton, New Brunswick. It would be during these months that her endurance was no doubt tested by a little sister who was frustrated beyond words with what her legs could not do and would never do. Yet she still visited me, brought me books, games, dolls. She and her husband took me out for drives, for ice cream, lunch in city restaurants. Then it was time for them to bring me back to the Centre at the end of a visit. I didn’t like that part, but I knew she’d be back to see me again. I was good at waiting. Still am.

Books were a huge part of my life from the outset; Christmas and birthdays saw lots of books coming my way. Dad subscribed me to a book club – the Companion Library – double-sided books arrived in the mail every month. I was in wordy heaven. All the old Classics – a lot of Dickens in that collection. Then there were books that Mom bought – The Bobsey Twins, The Nancy Drew series and the companion series, The Hardy Boys; The Five Little Peppers and How They Grew; Little Women, Little Men; on and on. Then – there was Anne with an E; the stories that captured me and drew me in; the odd girl out who would find herself as she grew and realize she had something important to say. I was Anne with an E and she was me. She hated her red hair; I hated my body, my legs and what they could not do. It took growing and maturity for me to realize that my scrawny, weak legs didn’t have to stop me. What rested upon my shoulders – a good head, a good mind, would carry me through. I think my sister saw that – thus her decision to keep the books flowing – her gift of Anne and the ‘Anne books’ I treasured for years. None of my books had turned down corners; they were never laid pages down while waiting for the next chapter to be read; when a chapter was finished, a bookmark was slipped between the pages and the book was closed and placed on my night table until the next part of the journey began the following evening. Over the years, while still living at home, my library grew. When I went off to university, the books were safe for many years. Then it happened! Mom donated my library to the elementary school. She kept back the Anne with an E books – they were to find a special home – that collection went to Maureen’s only daughter, Kathryn. I’ve never thought to ask if she still has them. If she does no longer, I can only hope that they have gone on to be enjoyed by other girls who are in need of a few Es of their own.

Early on, I was a screamer and a whiner; I was later to understand that screaming and whining were not strictly functions of a bratty kid, but more a frustrated reaction to cerebral palsy, the condition with which I was born that altered the way I would move, the way I would grow up, and the way I would live from childhood to adulthood. In fact, I had conversations with our younger brother about the frustrated mini-me of our childhood and he understood as an adult what neither of us appreciated as children. We get on very well now because we now understand what my needs took away from him. I was treated as the ‘baby’ of the family, when that was his spot. Certainly, there were going to be trials. Maureen steered us through all manner of infantile messes that we created because we lacked the awareness to see that things would get better. She knew!

From a child’s perspective, cerebral palsy robbed me of a lot with regard to interaction with other children, particularly in play settings. I never felt that I quite fit. As an adult, I am very comfortable in my skin, and on my slender legs supporting equally slender feet. Though they still don’t move well, my legs look damned good. Our father always said, of the 3 sisters, I had the nicest looking legs; whether that was his way of reassuring me that it didn’t matter that they didn’t carry me around a basketball court or across a skating rink, or he really did believe they were nice looking specimens with well defined quadriceps, it meant a lot. It told me that he and the rest of the family weren’t going to allow themselves to measure me, to define me based on what I could not do. Over time, it became clear that there was not much that I couldn’t do. I often sat in the kitchen and watched Maureen as she baked this cake or that pie. I was taking it all in, like a sponge.

I remember one Christmas when she was home with Peter, Maureen decided we should have a fondue. She made some really tasty dipping sauces for the strips of beef that she and Mom prepared. Then there was the chocolate fondue with fruit.

As her own two children grew older and I had occasion to spend time with them during their visits to Nana and Poppy, they, too, developed an E of their own; an empathy for those who were ‘differently able’. I remember more than one evening when Maureen and Peter’s children were to be in bed asleep but they were, instead, having a serious discussion with me about my life as someone who walked awkwardly; how was it for me as a kid, and so on. Maureen, being a wise young woman, like our mother, let us alone and let her children ask the questions they needed to ask – so that they would learn, and take that learning and knowledge along with them because my sister knew that her children would meet others like me – some with more serious limitations, and as everyone knows – knowledge is power. Another E – her children became empowered thanks to their mother, my sister. There would be , over the years, many visits to the home of our childhood -- Maureen, her husband and children, and sometimes, Maureen on her own, as Mom and Dad grew older and she felt it important to spend time with them. She was always baking something special for them during those ‘home visits’.

When we were all adults and on equal footing, Maureen got to know the mature me; the me who studied psychology and social work. The me who worked in a group home with intellectually challenged young people, and the me who still had the artsy crafty bent – a few hand knit blankets and a hooked rug found their way into Maureen’s home with Peter and their children. I had occasion to visit and see the rug draped over a sofa. She explained that it was far too pretty to put on the floor as she realized how much work went into it. She respected my gift on so many levels; yet another memory of her generosity of spirit. She got to know the me who wrote about life as a person living with since-birth disability. She got to know the me who went on to get married and make it clear to all who knew me that I was going to be just fine. What she taught me when I was a small girl was huge; thanks to my sister I felt comfortable in the kitchen. So many with disabilities such as cerebral palsy don’t have such wonderful opportunities for learning, for growth, for empowerment. My sister gave me all of that! Cooking for a husband who appreciated my talents in the kitchen made for a happy and healthy home couldn’t have been achieved with such ease were it not for my sister and her showing me that I could do, that I can do.

Years passed and my sister faced considerable challenges of her own; in her 30s, still a young woman, she was plagued by rheumatoid arthritis and over time it worsened, robbing her of energy and wracking her body with unimaginable pain, making it necessary for her to take many drugs. Over time, other medical complaints compromised my sister’s quality of life but she never let what she didn’t have anymore get in the way of enjoying what she still had, what she would always have – a husband, and children, and then grandchildren whose love for her knew no bounds; family and friends who were witness to a strength of character and will wrapped up in an elegance that was very much a part of who she was. She was Maureen.

                I came into the world impacted by an injury to my brain that resulted in a life of living with and now growing old with cerebral palsy. I was fortunate to have grown up in a home with an older sister who took it upon herself to make sure that I would have childhood experiences not unlike those enjoyed by other little girls, though the way I explored new things might have to be slightly altered. My sister came into the world, healthy and whole, growing up to marry and have a family of her own. I doubt she ever gave thought to the idea that she would spend most of her adult life living as a person with disability. Maureen empowered herself to rise above and to press on, and that’s exactly what she did until she drew her last breath. All the breaths of Maureen live on in her brothers, her sisters, her husband, her children and her grandchildren. We all will make sure that who she was, and what she meant to each of us, will never be forgotten. God’s speed, Maureen.