Managing the dignity of risk: Pulling out grass

These days, Agnes and I are preparing for our father's death, inasmuch as one can do that. I have found myself reflecting back to our mother's death, looking for clues about how Agnes may react, how I should support her, etc. So this is a current musing on a past event - but one that has significance for me in my current work as Agnes' sibling-parent.

Agnes and I lost our mother twenty one years ago. She died from pneumonia, but as a complication of metasticised breast cancer. Agnes was there at the bedside with us. In talking with my father about this, he reflects "we didn't want to hide the process of death from her" and "we thought she needed to not be 'protected' from mom's death." These sentiments appear to me to fall directly in line with Robert Perske's ideas about the "dignity of risk." Perske says that "The real world is not always safe, secure, and predictable" and that "overprotection may appear on the surface to be kind, but it can be really evil. An oversupply can smother people emotionally, squeeze the life out of their hopes and expectations, and strip them of their dignity. Overprotection can keep people from becoming all they could become.Many of our best achievements came the hard way: We took risks, fell flat, suffered, picked ourselves up, and tried again. Sometimes we made it and sometimes we did not. Even so, we were given the chance to try. Persons with special needs need these chances, too." Although mostly applied to daily life (e.g. making friends, working in the community, taking public transportation, stuff like that), I think that there is a level of risk - perhaps emotional risk - involved in watching a person - especially a parent - die.

We did have supports in place. Our minister was with us, a good family friend who "got" Agnes (and was also a social worker) was also in the house with us. It was a terribly sad and physically difficult to watch scene that is emblazoned on my mind, for sure. I know it is for Agnes and Dad as well. However, what I want to focus on was how Agnes dealt with the death - immediately after the death. I sort of blacked out, but was somewhat conscious that our minister, and close family friend, was out in the front yard with Agnes, who was screaming a lot. I am sure a psychologist would say that Agnes has "low frustration tolerance" and this moment was on the extreme end of that spectrum - complicated by grief, to be sure. I remember wandering out of the house, not knowing what to do with myself - Mom was dead - Dad was crying in the house and Agnes was screaming in the front yard with Nan. Agnes was screaming and crying and pulling grass (and an errant violet or two) out of surprising large swatches of our lawn. I later found out Agnes' therapist had been preparing her for this moment - and had encouraged her to pull grass out of the lawn instead of engaging in her more common, daily self-injurious behaviors (usually banging her nose until it bled, skin picking, hair pulling, head banging, etc). At the time, I thought that grass pulling seemed like a way better idea than the usual alternatives in Agnes' repetoire of coping. I suppose that was a somewhat teenaged construction of what was going on - a sarcasm even - that made sense in the context of what I grew up with. I do remember that cars were slowing down on the road in front of our house and I imagined that the police would be there soon (new neighbors often responded to neighbors calls about bizarre behavior or screaming in our house, until they began to understand more about Agnes' ways). I think I high-tailed it out of there - running to a local field to get away - I'd had enough embarrassing moments with the cops around my sister in my time. The whole scene went on - and I didn't think about the grass pulling again for years. Agnes, Dad and I got into grief counseling, and we muddled through the tough times, and moved ahead with our lives.

Flash forward fifteen years or so to a disability policy class in graduate school. The topic of the day was "the dignity of risk" and I was really wrestling with this new-for-me concept - both as a sister and as a student of social welfare policy. I felt that the wholehearted embrace of the idea was not realistic and I was having a visceral response. I wondered how many of the students in the room had grown up with a sibling like Agnes - or knew someone close to them with similar challenges in life. I remember feeling angry at people for being so doctrinnaire. In my own way, I tried to participate and talk about the ways that people like Agnes can engage in the dignity of risk, and out of nowhere, came the story I tell above, in abbreviated form. I explained that I thought it was good that Agnes had experienced Mom's death - so that it wasn't some hidden mystery for her. Nodding heads in the class. I explained about her "low frustration tolerance" and how it usually led to self-injurious behaviors. Nodding heads, looking a little shocked now (in my mind I imagine them thinking - that's not the angelic special olympics vision I had of intellectual disabilities). I then explained about the grass pulling as a strategy. What happened next surprised me. People in the class said things along the lines of "couldn't you have gotten her to do something that was more normal? You know, normalizing her response to grief?" At the time, I was already feeling angry - which was probably about my own "stuff" and nothing to do with the class...but I just said that I thought it was better than seeing chunks of hair and blood flying all over the place. I secretly revelled a bit in the schock value of all that. It was a conversation stopper. Problem is, that is where the conversation should have started.

In any case, here we are now, in 2009. Agnes is refusing to see Dad due to being upset about his illness. I am wondering what to do. Agnes' self-injurious behaviors are largely controlled now, thanks to Risperdal, though that medicine has some negative side effects. I am not sure whether I will encourage her to pull out grass or not when Dad eventually passes away. Maybe our approach of talking about it, planning for it (she has a whole protocol in place for me, what I should do when Dad dies, and in what order), will negate the need for grass-pulling. Only time will tell. I need to look into what the literature says about bereavement processing for people with intellectual disabilities...in my spare time! I am guessing this is a topic that many of us need to think about vis-a-vis supporting our siblings - each with their own challenges, stregnths and family realities? What are your thoughts on all of this, other siblings out there?