I am not saying anything particularly profound when I write that society undervalues mothers and the work they do, particularly when it comes to extreme maternal caregivers of profoundly disabled children. However this past week I had a stark lesson in the dollars and cents of how a mother is valued, or not.
Since Matthew is now over 18 years of age he is legally an adult. As his parents we now need to go through a process that gives us the legal right to manage his money and make decisions on his behalf since he is unable to do so. While stressful, I am aware that this process is an important part of providing the best care for my son. What this has also meant, though, is that we have had to dust off the seven-year old legal judgement that the courts used to establish the financial amount of Matthew’s malpractice award. We were advised this week that this judgement is legally enforceable. This means that it is possible, though hopefully not likely, that the public guardian and trustee will argue that because I do not spend Matthew’s money the way a judge believed Matthew’s money should be used, my management of the fund will be called into question. I like to believe the PG&T will look at the decisions we have made and discover quickly that I actually have a better sense of what is in Matthew’s best interests than a courtroom judge who authored a decision almost ten years ago. But I also haven’t had the best experiences with the courts, so I worry.
But what has been eye-opening for me has been the re-reading of the legal judgement with new eyes. When the almost 100 page judgement was released I obviously read it. But at the time I was still too raw from the recent legal battles to really unpack what the judgement was saying. At that time I was just relieved that the whole process was over and that we weren’t going to have to sell our house to pay legal bills. There were things about the judgment that worried me, mostly that it consigned me to nighttime care for life, but I just wanted to be done so I filed the judgment and carried on with life.
The thing about the judgement is that it offers, in cold hard numbers, some insight into how our society values mothers. Or doesn’t.
Briefly, in the judgement the judge decided that I would be required to provide Matthew’s overnight care 3 weeks out of 4 until Matthew died. By the appeal Matthew required full-time overnight nursing and Matthew’s legal team attempted to have this decision challenged – mostly because it was unfair to compel me to provide overnight care for life. For the record, no one ever asked me if I wanted to work nights until my son died (it is assumed he will die before me). As I understand it was also precedent setting to compel an adult to care for an adult and Matthew’s legal team worried about the impact of this decision moving forward.
What is particularly interesting, and troubling, is the arithmetic the judge used to value my care. In authoring a judgement a judge must develop a formula to arrive at a dollar figure for the award. To do this s/he estimates the cost of care and other necessary supports for the life of the individual, bearing in mind that the award will often mean the individual also loses access to many publicly funded supports. In calculating Matthew’s amount, the judge decided that I would be responsible for 8 hours of night care but I would be compensated for two hours. Further he valued my care as that of a personal support worker, even though I was performing activities that would fall within the jurisdiction of a nurse, and at the time I was an occupational therapist. One could argue that compensating me based on the hourly wages of either of these two health professionals would have been more appropriate. All other caregivers in the judgement were compensated commensurate with their experience and hours worked, only my time and rate of pay were modified. Indeed even the Ontario tax payer was compensated fairly because part of Matthew’s award was immediately handed over to our public health care system to address the additional burden Matthew’s injuries placed on the medical system.
I will spare you the math I used to arrive at this number, but I figure that my work as a Matthew’s mother was valued at about 12% when compared to all other caregivers or labour provided. Remember, I was to be compensated for a fraction of the hours worked, and then using a rate of pay that did not equal the skills and qualifications required to do the job. This of course only addresses my overnight care. The actual mothering and caregiving I was providing, and will provide for Matthew’s life, was not valued at all.
It isn’t the money that bothers me. I could care less about the money. Nor is it the fact that I am expected to care for my son for life. I love all my children and their best interests will always be my priorities. For life. What I do find concerning is the message this judgment clearly conveys about how we value, or to be precise undervalue, extreme caregiving mothers, and in turn how this lack of value is used and abused by our society.
The requirements heaped upon mothers who fall into the extreme caregiving category are staggering. They demands are, and will always be, more than one human being can shoulder. Resources in the form of funding, equipment, and additional caregiving support will always be essential, but are sadly rarely offered to the extent needed. Because mothers are mothers and their work is undervalued, indeed they are often expected to sacrifice all, our society assumes they can shoulder these responsibilities without supports. The unpaid, unseen, and undervalued work of mothers saves our society huge sums of money. But yet these cost savings are borne on the shoulders of some of the most overwhelmed and overworked women in our communities whose labour is minimized. It is a sad comment that the valuable labour that keeps the most vulnerable children in our province thriving is so undervalued. And thanks to Matthew’s judgment I can now put a number on the (under) value of that labour. Our highly skilled maternal labour, the stuff that keeps our kids alive and happy, is valued by the structures of our community at about 12% of other care providers. Sobering.