The Journey Continues: More Miles To Come

 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 

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