A mother’s response to personhood and suffering.

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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.

 

 

An angel in the house. And the part we often don’t talk about.

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Nine years ago our caregiver, Carol, joined our family.   When we hired Carol we had reached a point in our parenting of Matthew that I could no longer sustain his care independently.  We had some weekly support from homecare services but that support was limited.  To complicate matters Matthew needed significant medical care during the night so I was chronically sleep deprived.  We eventually switched to full-time night nursing to allow me to cope but this meant that all our homecare hours were consumed by this night care.  We reportedly maxed out the government allotment for homecare services.  And yet even with maximal support I was still only  hanging on by my finger nails.  Indeed some months we would run short of nursing hours so we had a standing arrangement with a local children’s respite home that Matthew would go there for a few days each month to bridge the gap in funded care.  Thankfully it was understood that I could simply not provide 24-hour continuous care.  Those years are a blur and nothing could compel me to re-live them.

 

At this point in our journey there  were no homecare hours left for daytime care.  That meant that appointments, grocery trips, outings, extracurriculars for our other boys, all of it, became a logistical dance. While I was loathe to admit it, Matthew’s care had progressed to a point that one caregiver, even a fully dedicated one, could no longer handle it solo.  If we were to keep Matthew living at home amid a healthy family unit we needed help.

 

Enter Carol.  She was, and is, a saint who saved my life.  Carol quickly mastered the nuances of Matthew’s care.  But more than that she was (is) devoted to him.  She took him on walks.  Read stories endlessly.  She baked cookies with Matthew -cookies my growing teens, Robert and David, inhaled.  Her care allowed me to finally have time for myself.  I could catch up on my sleep and spend time with my other boys.  I even went on dates with my husband from time to time.  Eventually I went back to school to try to pursue a long dreamed-of graduate degree.  There aren’t enough words in the English language to express my gratitude for Carol’s support.

 

But there is something about this story that is important to note when discussing extreme caregiving.  It’s a part of the story we usually don’t talk about.  We hired Carol with funds from our family budget.  Funding a full-time caregiver is not an insignificant cost and we were lucky we could afford to do so.   The government did not provide the sort of support we would need to allow our family to thrive.  Indeed we received just enough to support to avoid catastrophe.  Equally important to the conversation was that we hired Carol after I had left the work force and before Matthew won a malpractice award (that now funds his care).  Most families simply cannot  absorb the double-whammy of a loss of a family income while also funding full-time skilled care.  We were just unbelievably fortunate that my husband has an excellent, well-paid job with generous medical benefits.

 

Ask any extreme caregiver and they will likely tell you that they are stretched to the extreme with little meaningful assistance from government homecare supports.  It isn’t that there aren’t supports.  They exist.  It is only that for extreme caregivers the offered support is usually a drop in the proverbial bucket.  Throw in the relative absence of adequate long-term housing options for both paediatric and adult populations and you have a troubling scenario involving maxed out caregivers with few options.  Things like quality of life go out the window and are often replaced by a goal of sheer survival.  It is no way to live.  Indeed I would argue it isn’t really living, it is often barely surviving.  And one needs to remember that for a family with a young, complex child there is seemingly no foreseeable end to the surviving.

 

We can’t talk about extreme caregiving without noting that raising a kid like Matthew is expensive.  Yes, primary care is funded in Canada.  Thank goodness.  I cannot imagine raising Matthew south of the border.  But even with funded primary care the costs are massive.  Until recently paediatric medications weren’t covered.   We had years where Matthew’s pharmaceutical costs exceeded $40,000.   Throw in the recurring costs of  incontinence supplies, feeding tube supplies, syringes, and so on, as well as sporadic costs such as personal care equipment, transfer equipment, and home modifications, and the costs of caring for a child like my son are staggering.   Statistically most families with a profoundly disabled child have one parent leave the work force so these costs are subsequently shouldered by one income.

 

In Ontario income thresholds to qualify for supports are fairly low.  Many middle-income families are excluded.  Funding for some equipment and drug costs is available but the administration effort to secure such funds is onerous.   There are reams of forms to complete and professional signatures to obtain – at times for only a fraction of the cost of an item, and only after the family has funded the item out of pocket.  The strain placed upon an already overextended parent – emotionally, physically, financially – can be overwhelming.  Even when your child has a permanent disability forms often need to be re-completed every few years.  For ongoing expenses such as diapers or feeding tube supplies parents are required to keep every receipt to demonstrate that the funds are used for approved costs.   There is a sense of distrust – that parents might use the money elsewhere – and audits happen randomly.  I can remember once being audited for incontinence costs.  The annual amount provided by the Ministry was $750 -nothing close to the true cost of Matthew’s diapers/wipes/creams/enemas.  But yet I had to provide an accounting of every penny spent on incontinence products that calendar year even though the cost easily exceeded the provided funds.

 

The upshot of all of this is that I am lucky.  I am lucky that my husband’s income has meant that we have never had to worry about paying the mortgage and buying groceries.  I have never had to struggle with whether I could afford to purchase my son’s medications.  I have never had to watch debt mount simply to ensure that my son’s basic costs were covered.  And not only could we afford all the necessary supplies for Matthew, but we could also afford to hire an angel in disguise so that our family could not only survive those peak caregivers years, but could thrive.

For  extreme caregiving families to survive, much less thrive, the need for increased funding and support is real.

 

 

 

Community Saves Lives

 

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I am not sure if it has been a case of the winter blahs, or simply that I have been very  busy, but lately I haven’t felt much like writing.  Which is weird.  Writing is often how I make sense of my life. I am not sure if that means that my life, of late, makes sense. Or it doesn’t.  =)

But today this video jumped off my Facebook feed and made me take notice.

 

The gist is that human connection is a greater predictor of longevity than other things like exercise, weight, or even if you’re a smoker.  This human connection includes your close relationships, but even more significantly, includes casual social interaction with people in your day-to-day life.

And what immediately struck me is that people with disabilities and their caregivers often live very socially isolated lives.  Like really socially isolated lives.  Caregiving, in particular, is very socially isolating.  During my peak caregiving years it was not uncommon for me to go entire days without any significant adult conversation.  I was fortunate to have two able-bodied children who kept me connected to a community through their activities.  And to a certain extent I had some human contact with the rotation of staff in my home.  But I also spent huge amounts of time alone watching others live seemingly busy and rich lives.  I knew people cared about me and that helped immensely.  But I was often still very alone.   In many ways I am grateful for the emergence of social media during those years.  Things like Facebook and Wondercafe (the United Church of Canada discussion site) formed the cornerstone of my social life and nurtured friendships that in many cases went from virtual to real.

Research study after research study indicates that one of the most deleterious effects of caregiving is that it isolates.  The other burdens of caregiving – sleep deprivation, the staggering workload, the constant worry you feel for your loved one – are often significantly mitigated if one has a caring community.  It isn’t just because people are more likely to help if they have insight into your daily life, though there is that.  It is because if you have community you know you’re not alone.  And those little bits of human contact, as the TED talk shows, are lifelines.

Yesterday during a meeting I attended the idea of intentional community emerged.  Intentional community is exactly what it sounds like.  It is the notion that one creates community in a deliberate manner – either for themselves, or for someone they care about.  It was noted that often people expect community to “just happen” – which is a huge problem when you are an isolated caregiver.  Community often doesn’t “just happen”.  Which means that one needs to actively try to create community.  Historically things like attending church often nurtured community.  But these days less so.  And finding the time and energy to create a knitting club, or a book club, or a coffee gathering is hard.  Particularly if you’re swamped with caregiving duties.

 

So if you want to help a caregiver reach out to them.  Invite them to activities. Call them. Drop by with muffins.  And when they don’t have the time to accept your invitation call them again.  Send an email.  Ask them about their day.  It is okay that you can’t help with their caregiving duties.  It’s cool that you don’t know the front end of a feeding tube from the back end.  What matters is that you’re their friend and that you reach out.  And perhaps even more important, you keep the option of their reaching out to you always available.

Being a friend can be hard work. And it matters.  More than we thought perhaps.