A mother’s response to personhood and suffering.


I have spent the last week or so preparing undergraduate lectures tackling such profound issues as suffering, disability, and personhood.  It’s been a wonderful opportunity and listening to the ideas of the millennials in class has been thought provoking to say the least.


Last week my lecture focused on the issue of personhood.  As in, who is a person?  And of course the reason we ask these questions is because we tend to care for people.  We don’t “kill” people.  If a being has been deemed to be “not a person” the rules change and things get heated pretty quickly.  Think abortion.  Think euthanasia.


You’d think it was a straight-forward question, who is a person.  But when you let theologians and ethicists into the room the conversation gets contentious and complicated pretty quickly.   We have theologians who argue that personhood is created by stories and by communities.  We have theologians who link personhood to the Divine story and our human role in this Story.  And we have medical ethicists who argue that some basic level of cognition is required.  Indeed Princeton utilitarian Peter Singer argues that it may be morally correct to kill profoundly disabled infants in part because of their (expected) lack of cognition. I have always been struck by the fact that based on Singer’s criteria my dog may well qualify as a person while my 19 year-old son would very clearly not.


In class it is my job to orient students to a range of opinions and encourage them to sift through the arguments vis a vis their own personal values.  It is NOT my job to tell them which ideas I personally like and whether I agree with a particular view or not.   So the students (unless they read this blog!) don’t know that I really don’t care for Singer’s arguments.  As an academic I see his point and I “get” where he’s coming from. But as a mother I don’t like what he says.  My son is a person despite the fact that he would fail any form of cognition based testing for personhood.


As an aside, the first time I was introduced to the work of Peter Singer a good friend said he wanted to be in the room when I read Singer’s thinking about disabled children.  He claimed he had never seen a head explode and he figured mine would.


Singer talks about the fact that perhaps we should kill some severely disabled infants in the NICU.  And the academic in me agrees that he makes a compelling argument.  In this case Singer’s argument is based more on suffering – which he links to future intellect, to be sure- but in the NICU Singer’s point is that since active euthanasia is verboten, passive euthanasia is quietly practiced.  Passive euthanasia means that we withhold treatment/food/fluids to allow an infant to die and Singer (rightly) argues that this approach may not be the most humane way to cause death.  And he is clear that this happens all the time in the NICU. And again he’s correct.  It happens All. The. Time.  Before Matthew was five days old we had been asked repeatedly if we wished to discontinue life support.  Health professionals were very clear that this was a viable option chosen by many parents.  They were also very clear that no judgment would be offered if we chose to allow Matthew to die.  At this point in Matthew’s recovery his death was assured if we discontinued intervention.


In contrast to Singer, many theologians argue that personhood is about our stories and our communities.  Even if one has a significant cognitive impairment like my son one can often live a richly storied life amid a loving community.  L’Arche communities are a global example of this life.  This is a conceptualization of personhood that resonates for me.  Matthew’s life is rich in stories and rich in community.  His stories are expressed in dance with his colour guard and in song with his choir.   His stories are told by his brothers and his parents, and his caregivers and his friends since he does not have the words to tell his own stories.  But he has stories.  Lots and lots of stories.  The expression is just different and different isn’t a bad thing.  And if we had chosen to end his life shortly after his birth we all would have missed out on these stories.


If we base our personhood test exclusively on something like IQ we are profoundly limiting what it means to be human.  And we are profoundly limiting how joy is defined.  Since Singer is a utilitarian this last bit is important since utilitarians, simply put, are all about maximizing pleasure while limiting pain.  But both pain and pleasure are essential aspects of our humanity and if I have learned anything as Matthew’s mother I have learned that joy and pain can co-exist in the same breath.  It is a paradox to be sure, but it is also the stuff of life.  I am not suggesting that we valorize suffering.  Anyone who knows me knows I would never suggest that.  But we cannot be afraid of suffering since to be afraid of suffering means to be afraid of living – which is what people do.  And living amid suffering, while challenging,  is possible.


I have  often wondered if Singer has ever spent any meaningful time with a close someone who has a severe intellectual disability.  And if he did whether it would change his thinking?  Because I think what we learn most when reading Singer’s work is not what defines a person, but what Singer values in life above all, which is intellect.   For Singer not being intelligent in a classical sense is synonymous with suffering and makes life undesirable.


Anyone who knows me knows I resist turning suffering and difficult journeys into Disney movies.  And in particular I reject turning my son’s suffering into a triumphant narrative – that is unfair to Matthew and minimizes how painful (literally) parts of his story have been.  But I do know that Matthew, in his own way, offers clear messages about what it means to be a person and that personhood includes suffering.  Matthew is also clear that personhood does not include a high IQ.  What also defines our personhood is how we respond to suffering, and there is a great deal we can do to mitigate suffering that doesn’t involve killing people.



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