Every Saturday morning my husband and I head over to our local bagel shop for our weekly dose of carbs hot off the the wood fire. Most weeks we read the Globe and Mail together often leading to a conversation about some hot-button news topic. No surprise that this week the news item was Kavanagh and female anger.
The Globe had and excellent opinion piece exploring female anger, and in particular the challenges many women face expressing their anger in a patriarchal world that does not equate anger with femininity. Oftentimes angry women are derided for being hysterical or hormonal even when their anger is reasonable and well-expressed. And unfortunately in a world where privilege and power are often stacked against women the only way to advocate can often involve anger. The challenges for caregivers are even more pronounced. Anger can be an understandable response for maternal caregivers embroiled in a system that ignores their hard-won expertise, at times leading to the continued suffering of their child.
Like most maternal caregivers I could tell many stories of a system that failed my son and earned my anger. But one stands out. Several years ago I brought Matthew to the ER at our regional children’s hospital. By this point in Matthew’s life he was well known to the ER team. Matthew’s very severe reflux had spiralled out of control. He was regurgitating upwards to 14 times a day. He was regularly vomiting blood. And he was miserable. Oh, was he miserable. He couldn’t keep food, water, or medications down at all. His aspiration risk was through the roof and he was monitored at all times, including during the night. His pain was poorly controlled and he was unable to sleep. He fussed and screamed constantly. I remember these days as nothing more than a constant attempt to find a way to make him comfortable. We lamented that we measured his medical stability and pain free time in minutes, and perhaps hours. The idea of an entire day of a happy Matthew was inconceivable. Conversations among his community based feeding and care team began to dance around a possible GJ tube (jejunal feeding tube), or even TPN (total parental nutrition via IV). We regularly met with his health care team to discuss our concerns, but no forward movement seemed to occur. Physicians were often unwilling to manage pain they did not understand until I gave them no other choice – so we listened to Matthew cry. To say I was angry and frustrated would be an understatement. I had been questioning the need for a fundoplication (sealing the stomach to prevent reflux) for years. Doctors scoffed at my suggestion. On one occasion I was told Matthew would have to “earn” a fundoplication by failing all other treatment options first. My son was suffering and my concerns and suggestions were unheard.
One day I decided enough was enough. Like many other days Matthew was vomiting blood and crying. So I packed Matthew into our accessible van with an overnight bag and drove to the now familiar ER. When questioned by the team about why Matthew was “in the ER today”, I responded that we were here because I had “finally snapped”. I told the team that I was frustrated and angry about the system’s lack of response to my concerns and we were not leaving the hospital until an acceptable plan was developed to respond to Matthew’s wildly out of control reflux and chronic pain. I was pissed and I wasn’t leaving.
Matthew was admitted to hospital and this admission led to a year long journey with a GJ tube – which failed miserably – and finally the hard-“earned” fundoplication I had been advocating for for years. But what I learned later is that immediately after my “I snapped” comment a member of the medical team called Matthew’s case manager – someone who had worked with our family for years. The case manager later told me that she was questioned extensively about my mental health and my ability to assess my son. The case manager was told that the medical team was deeply concerned about my “I snapped” comment – suggesting to them that I was no longer coping and my care was consequently compromised. I will be forever grateful to our CM because her response was reportedly “do you blame her?”. She pointed out that I had been reasonably expressing concern about my son’s declining health and spiralling reflux for months. She noted that Matthew’s pain seemed out of control and that he was failing to thrive – a concern noted and documented by the community homecare team at her end. And she noted that my regularly voiced concerns were being ignored at Matthew’s great expense. She suggested that rather than spending time focusing on my (in their opinion misplaced) anger and frustration, or my mental health, that the team might actually listen to me and try to figure out what was going on with my son.
To me this story illustrates the problem a deeply patriarchal system such as medicine or law has with women’s anger. First off, as a woman and mother I am not supposed to be angry, even in the face of a system that is failing my son. I am supposed to walk into an ER and defer to the patriarchal system that interprets and manages my son’s body, even when that assessment goes against my “read” of my son’s health. I am expected to ignore my maternal knowledge, unique and highly responsive to my son, and extend full decision making capacity to the medical establishment and their objective knowledge. Sure, these days there is conversation about collaborative medicine, and at times it is practiced well, but I can tell many stories when physicians were loathe to include me as a peer in the conversation, with troubling outcomes.
In this example of Matthew and me in the emergency room, rather than listening to my concerns, exploring their role in the situation, and examining constructive responses, all of which involved working with me as an equal, the team immediately became defensive in response to my anger and a challenge, no matter how politely worded, to their authority. Their first response was not to explore my concerns, but to call our case manager to express concern about an “emotional mother”. Because in this situation it couldn’t possibly be that I, a deeply connected mother lacking a medical degree, could be correct in my assessment of my son’s health when they had been missing the problem for months. No, the problem was clearly that I was a hysterical woman and not coping. For the record at no point was my behaviour out of control. I was reasonable and polite throughout, though I was also assertive and clearly resolved to remain camped out in the ER until there was a plan to address my concerns. In other words I held the system accountable. It seems they didn’t like that.
Today’s article in the Globe reminded me of this situation in the ER. I was reminded that anger and assertiveness in women, even controlled and politely worded anger, is often actively muted. I was reminded that attempts to hold a patriarchal, power-based system accountable for their behaviour can lead to woman-blaming. Women are socialized to be acquiescent, deferential, and even engage in self-blame, in situations where they have been abused, ignored, or mistreated. Rather than exploring the cause of my anger, the first response by the medical establishment when called to be accountable was to place the reason for my anger squarely upon my shoulders. That somehow I was no longer coping with the extraordinary caregiving demands heaped upon my shoulders, or that I was depressed, or anxious, or hysterical. The problem was me, because it could not be “them”.