The Four Walls of My Freedom (14 page)

Dear Mrs. Thomson,

This letter is to inform you that your file with the Children's Aid Society of Ottawa is now closed. The Society became involved with your family following a report that you had given Nicholas too much medication, without seeking proper approval from a medical doctor. Additionally, there was a concern that you were not effectively managing the stress of Nicholas' care and special needs. After meeting with you and your family, and speaking with many of the community professionals involved with your family, to discuss the concerns, the Society does not feel it necessary to remain involved with your family. The allegations were not substantiated.

To the appeal committee, they wrote:

Dear Mrs. Thomson,

As per our discussions throughout your involvement with the Children's Aid Society of Ottawa, this letter is in support of your family requiring a higher level of community and in-house medical supports to effectively manage Nicholas' ever-changing medical needs.

It is the position of the Society that it is in Nicholas' best interests to return home with his family. It is evident that Nicholas is an integral part of the Thomson/Wright family, with all reports describing a close, affectionate bond between himself, you, his father, and his sister. However, Nicholas' special needs and fragile health place both him and your family in a highly vulnerable position should his needs not be met within his home.

The child protection worker assigned to our case, the author of the two letters, became our advocate with the provincial appeal board. Children in Ontario whose needs exceed the maximum offer of help from the province can appeal to the Office of Child and Family Advocacy, essentially an ombudsman service with its own appeal board called
IMPAC
. That committee had already garnered plenty of practice working with families such as mine. One mother, Anne Larcade, had tried to launch a class action suit against the province for forcing her (and other parents) to give up custody of their children with disabilities when they chose to have them placed in a publicly funded long-term-care facility. Faced with inadequate service provision at home, Larcade and others were told the only way to access more help was to “buy” a residential placement by paying for it with their parental rights. The class action suit failed, but the story made the news.

In 2005, the then Ontario ombudsman, André Marin, issued a scathing report titled “Between a Rock and Hard Place” describing in depressing detail the cases of 113 families who had been forced to relinquish custody of their children with severe disabilities in order to secure round-the-clock services for them; 196 other families were on a waitlist for the same deal with the province.
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Mothers had to sign away their parental rights and admit to being incapable of caring for their offspring in order to secure services necessary for their child's survival. The either/or of state versus family-care arrangements, with very little in between, is still the status quo in Ontario, but it wasn't always so.

In the early 1980s, the provincial government instituted “Special Needs Agreements” under which families could share care of their disabled child with the Children's Aid Society without giving up custody. In 1997, the government discontinued entering into these agreements, and families were left with no choice but to continue looking after a child whose needs they could not meet or else manufacture child protection issues resulting in the loss of parental custody in order to “buy” care.

On February 7, 2009, the
Ottawa Citizen
printed a story about an Ottawa family who were on the verge of making that painful decision. Penelope McKeague was stillborn, but resuscitated after fourteen minutes, leaving her with multiple disabilities. Shelley Page reported: “Penelope had screamed for hours, screamed like she was possessed, screamed past exhaustion. Nothing would bring her comfort. Not even a steaming hot bath to loosen her tightening, always tightening muscles. Everything makes her frantic. The feel of her clothing. A sudden noise. Her mother's love. ‘She doesn't like to be cuddled,' Kristine Gavrel says wistfully.”
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Gavrel, like me, reported wanting to be a mother, not a nurse. She felt a failure as a mother and incapable of soothing an inconsolable baby daughter who could not tolerate any form of stimulation, including being held. “She already had the worst birth imaginable. She was stillborn. And now to get proper care we have to give her away?” asks Ms. Gavrel. “That's like another death. This is just a horrific situation. There is a huge stigma to saying you can't care for your child. I am a decent person and a good mother, but in the eyes of society, I won't be.”
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Under what circumstances can mothers like Kristine Gavrel or me be allowed to mother our children with disabilities? If those disabilities result in needs that are too great for one person to safely provide care, then what options should exist? The current paradigm of state control or family control with minimal support is clearly failing the neediest citizens. The one reason that Kristine Gavrel and I got into so much trouble with authorities is clear. In our cases, representatives of state-funded institutions applied policy directives without a public acknowledgement that those policies did not serve our families fairly. Policies on child protection or social assistance were never written with our families in mind. Most people, policy-makers included, are not aware that we exist. But people with the highest care needs are surviving, and these are individuals whose care cannot be supported by any one funding entity alone. Separate policy routes such as through the Office of the Advocate for the Child (Ontario) should be much more accessible to families whose needs far exceed the norm. A public–private partnership with shared fiscal responsibilities is the model I believe will be necessary to care for our vulnerable loved ones. Currently, upper limits of home help available from provincial health and social services are too low for children with severe and multiple disabilities. Placement options do not exist except for children who are wards of the state. The public–private sharing of care and costs is a concept that does not appeal to a risk-averse state authority. Leaving aside the ethics of resuscitating a baby after fourteen minutes, should families and governments enter into shared care agreements? We already do so for many seniors. The sons and daughters of parents with dementia who enter care homes do not relinquish their caring relationships with their loved ones in order to secure a placement.

In the future, groups representing seniors could be pitted against those championing people with disabilities, in a fierce competition for public funding earmarked for social care. Substitute decision-making, powers of attorney and other such agreements already exist to assign roles and responsibilities vis-à-vis choosing care options and medical decision-making. Families enter into financial agreements with government-subsidized nursing homes using pension and retirement-fund savings to cover costs. Sons, daughters and other family members continue to play an active role in the life of their vulnerable relative and often contribute towards extraordinary costs in a collaborative manner with extended family. No one would ever expect to give up their family roles and responsibilities in order to gain placement for an aging and ailing parent. And no son or daughter would be expected to give up their employment, savings or home to pay for a parent's care.

So, why do we expect this of young mothers and fathers of children with severe disabilities? Being a good mother means something different to everyone — for me it has always meant help from government in the form of access to long-term-care budgets for high levels of nursing care to keep Nicholas at home. But I know that there will come a time when he has to move into his own “place,” and that time is coming soon.

When Nicholas is feeling well, and he often is, his disabilities seem invisible to me. Even though he is nonverbal, he has many meaningful sounds that only those closest to him understand, and we have long conversations on a wide range of topics. His language comprehension is almost perfect, although he has conceptual difficulties in some more abstract forms of reasoning. He has a wicked sense of humour and often has his helpers in helpless fits of laughter. So, although I am sometimes using cases of children who are more globally delayed than Nicholas here, I do that with the intention of underlining the ethics upon which our collective response to extreme dependency rests. It is worth picking apart the worst case scenarios of families like mine because these dramas force us to reckon with the moral fundamentals essential to inventing a social framework that will sustain us through good times and bad. One of the moral underpinnings that I require is the freedom to grow old without being my son's caregiver 24/7. A retirement of sorts, a hope of not changing my son's diapers when he is forty-five and I am past eighty is a moral “right” in my view. Neither is it acceptable for a young child to care for a disabled parent. The natural trajectory of giving care to another is a model for normal here, and our society should use it as a benchmark in policy-making.

In the current dialectic on social inclusion, there is a lot of talk on the subject of reciprocity. “What goes around, comes around” is a phrase often heard. Notions of reciprocity in action have galvanized communities to trade services, such as delivering meals or retired people and taxi drivers befriending shut-ins by shuttling them to medical appointments. But reciprocity is also an ethical idea that underpins our caring for an elderly parent who gave us life and a decent upbringing.

In our family's case, is there any duty of reciprocity here and if so, to whom or what should I (as Nick's primary caregiver) be looking for something in the way of payback for my son's care? Who will repay me for the care I give to my son? Who will care for me and Jim when we are infirm? Obviously, it won't be Nicholas. And Nick will most likely never be employed, so his life exists outside a social contract with the state. He will not pay taxes or contribute to a national pension plan. The case of children like Nicholas who are net consumers of social funds and who will never repay the state by becoming employed is one that poses the most basic of ethical dilemmas. In the context of shrinking national economies, hard questions have to be asked about the human worth of people who will never be employable. Sarah Palin's infamous Facebook post suggesting that “Democrat death panels” might order the euthanasia of noncontributing, dependent citizens, played directly into the worst fears of an aging population. Of course this was transparent, politically motivated fear mongering, but it received some traction because people do fear the natural endgame of the current thinking on dependency. Policies, programs and services are all directed at achieving independence and self-reliance.

But a hardline interpretation of those ethics leads people like Robert Latimer to be isolated in their attempt to bring up a totally dependent child without the help of friends, community or government resources. Such a stance does no favours for the state either, because the risk of catastrophic family breakdown is so high.

So, how might our society begin to think about a fairer deal for supporting vulnerable citizens? Eva Feder Kittay coined the word
doulia
to describe a new paradigm for reciprocity for caregivers in the community. She describes doulia as an ethical principle that recognizes giving care as an important contribution to the overall good of society. “We can ask whether parents or kin who assume the role of caregiver should have claims on the larger society to support them in their efforts to provide care. If, for all the effort and care in raising a child with disabilities into adulthood, there is no payback (conventionally understood) to the society at large, can we still insist that there be a state interest in helping families with the additional burdens of caring for a developmentally disabled child? Is there a state interest in assuring families that their vulnerable child will be well cared for when the family is no longer able or willing to do so?”
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Kittay answers her own question with a resounding yes and that response is rooted firmly in her own mothering experience. She describes a concept of interdependency or “nested dependencies” that recognizes the inevitability of dependency as a fact of being human. It is via the idea of doulia that reciprocity can be realized through policy because the driving force is an equality that “our full functioning presumes our need for and ability to participate in relationships of dependency without sacrificing the needs of dependents or dependency workers.”
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Carers' organizations in the UK are acutely aware of how their constituents are often exploited. When the UK government produced a policy on disability titled “Putting People First,”
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the Princess Royal Trust for Carers published a response entitled “Putting People First—Without Putting Carers Second.”
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For someone like me whose charge is incapable of reciprocating care, this idea is a welcome lifeline. Here Kittay is advocating an ethical framework for governments to look after caregivers so that caregivers can carry out that care without sacrificing their own wellbeing. We know doulia as friends and family members who help a new mother by watching the older children and performing household chores so that the mother can give total care to her newborn. Implicit in this natural family tradition is the understanding that the mother is “owed” care because she is giving care to a much loved, highly vulnerable newborn. Her first priority is to give the best care possible to her beloved charge. But Nicholas is twenty-one years old, and his physical needs are still similar to those of a newborn. What forms of payment can I expect for my years of giving care? Should I have any claim to rest and retirement? And if so, who should provide it to me?

The feminist scholar Arlene Kaplan Daniels coined the phrase
invisible work
to describe the many tasks that women perform in their families and communities. Picking apart our folk understanding of what constitutes “work,” Daniels wrote (in 1987):