The Personalist Project

One of my favorite bloggers, Kelly Mantoan of This Ain't the Lyceum, has two children with Spinal Muscular Atrophy. Her post this week is about that, but it's of interest to just about everybody, parents or not, special needs or not.

Kelly recalls:

I remember the first time Fulton asked me if he would be able to walk when he was an adult. I was getting him ready for bed, when BAM I was hit between the eyes with his innocent question. I remember answering him in a matter of fact way,  “No, you’ll always need a wheelchair.”,  and then getting a bit teary about it later as I recounted the episode to my husband.

Since that first time, Fulton and Teddy have asked Tony and I numerous times why they can’t walk, why can’t we just teach them to walk, and several other variations. As painful as these moments can still be for me, I realized very quickly that they were nothing of the sort for either Fulton or Teddy.

As a special needs parent, especially one who sees the milestones of her healthy children side by side with the limitations of her disabled children, I need to watch that I do not think my sons are any less happy than their siblings simply because they can’t do all the same things or require doing something differently.

When you have a special-needs child, it's ever-present. Even if (like me) you aren't inclined to build your identity around it, it's still easy to forget that you're seeing things through your own eyes, not your child's.

I want this post to remind you that Fulton and Teddy, and people like them, can speak for themselves and even I, as their mother, cannot fully share their experience. My stories may be about them, but they’re not Fulton and Teddy’s stories. My feelings may run the gamut, but they do not reflect how Fulton and Teddy feel. If my life is overwhelming, hard, frustrating, or upsetting, it is because that is my subjective opinion, and maybe I should check myself to make sure those feelings are appropriate, rather than assuming my life calls for such emotions. If my sons are not overwhelmed, frustrated or sad with their situation, why am I?

You see? She's not just saying "It's important for me to keep my feelings in check." She sees that life sometimes "calls for" some emotions, sometimes for others. Some feelings are fitting for a mother watching her child navigate the special-needs life, and others are fitting for the child himself. But more than that--each is separate and distinct, belonging to the subjectivity of one person, not another. Even if the two people are mother and son.

Maybe that seems obvious. But look again: it's surprisingly easy for us to try to "usurp" each other's subjectivity, in all kinds of sneaky or unconscious ways. Maybe we assume somebody feels the same as we do. Maybe we project our feelings onto other people. Or we try to manipulate them into feeling as they "should." Or into feelings advantageous to us. Maybe we think of other people's affective lives as extensions of ours. We can end up by forgetting they have their own subjectivity at all.

When Fulton and Teddy now ask me questions, I realize they’re asking with the same intention of any five or eight year old who casually asks, “Why is my hair brown?”, “Can I be a famous singer when I get older?”, “Why can’t I fly?”. Their disappointment is just as fleeting as when I tell them, “No, you may not make explosives.” or “No, we can’t have ice cream for dinner.”  *I* still feel a twinge of sadness because they won’t ride bikes or play football or experience many things my older children take for granted, but thus far, they won’t feel sad unless I imply to them they’re missing out on something great.

Now this is interesting. Even though Kelly very insightfully notes that she doesn't own their feelings--that their subjectivity and hers aren't one--she does see that she has a chance to influence them. She can do this by respecting their feelings as theirs, or by pressing her own upon them. She can spread the contagion of her own sadness upon their matter-of-fact acceptance of their limits--or not.

If later they become wistful because they can't join the football team, at least it will be their own wistfulness. Just as she shouldn't force hers on them, she shouldn't try to force them not to feel what they feel. Encouragement and realism is one thing; usurpation is another.

But it's tricky, especially in the case of parent and child.

For children who, due to severe disabilities, will not live to see adulthood or be able to function as adults, there’s no reason the time they do have can’t be filled with love. Children can feel love and joy from a bed. If we choose to see each moment they have as a drain, a waste, or pointless suffering, then that speaks to our perspective, not our child’s.

Lots of authors remind us that even a life of handicaps has dignity, that people with muscular atrophy or diabetes have just as much value as any "normal" person. So they do. But this point is almost the opposite: Kelly's not just saying that objectively her children are as valuable as anybody else's; she's urging us to take seriously their subjectivity. She's pointing out that unless we do that, our vision of the objective truth of their life will be hopelessly skewed.

It's a good reminder for all us "normal" people, too.

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Comments (7)

Katie van Schaijik

#1, Aug 20, 2016 12:26pm

I love her main point, and yours, Devra.

I just wished she hadn't reduced her own feelings, experience, and perspective to "subjective opinion," as if that's all it were.

This is a sore point for me lately. Having been in the habit of too much wrongful judging and "controlling" of my own subjective experience, I react quickly when I seem to see others doing same.

But, as I say, I love the main point. We all should be more aware of the tendency to usurp others' experience and standpoint.

Rhett Segall

#2, Aug 21, 2016 1:43pm

Kelly's sharing is precious!  And the use of the term "subjective" as an explanation for Kelly's initial limited perspective is open to what I tentatively sense is Kate's reservation.

Subjective can mean narrow minded. It can also mean a unique persnal experience. I hope the following (true) anecdote exemplifies how a subjective experience, in an understandably narrow sense, is opened up by the sharing of a subjective experience that is broadening. A sky diver's parachute failed to open. Miraculously the diver  landed in the deep mud of a lake bed. He lived but became a quadriplegic Of course the diver went into depression.  However his attitude changed  when he met another quadriplegic who was happy.

"How can you be happy?" the diver said. "You'll always be dependent on others. You can't get married. You can't get a good job.How can you be happy?"

Came the reply: "Every thing you say is true. And yet I can still listen to music. I can still talk to people. I can still read etc."

Arthur Gordon, who relates this story in "A Touch of Wonder", calls this the "And Yet" attitude.

A unique "subjective experience"; and yet wonderfully, objectively, real!

Jules van Schaijik

#3, Aug 22, 2016 8:05am

Great post Devra!

Peter

#4, Aug 23, 2016 1:25pm

Children need their subjectivity acknowledged and encouraged within a context of love, that is, love being the standard for an objective value system, otherwise you have a situation where everything is permissible is nurtured within the child and we know to well where this leads.  This love is given by way of empathy to the child from the parent.  The empathy is the lifeblood of a healthy emotional subjectivity for a child to grow in.  It takes skill or giftedness from the parent to be open themselves, to a real empathy, a real outpouring of love to connect with the child.  Alice Miller says this is only possible if this experience has been had by the parent from another "enlightened witness", but we've had discussions about the anthropological inconsistency of this theory at TPP.  But Alice Miller was in touch with the phenomenological component behind the psychology of a healthy subjectivity, no doubt. 

Peter

#5, Aug 23, 2016 1:26pm

The flip side of this phenomenon is that when children are not encouraged in their subjectivity, they deal with it in numerous unhealthy and unnatural ways, and worse, when gifted children are not encouraged, they will go to desperate lengths to find expression which often leads to tragedy.  There is a balance here, and I think Devra touched on this in this post.  In my readings of Alice Miller, I do not recall her writing about Jean Paul Sartre, but I would suspect that she would feel that his philosophical rigor was an attempt to understand the empathy that his parents seem to have withheld from him among other things.  This is speculation, but after learning all of the sad details of the logical conclusions within his philosophy of existentialism how else could someone arrive at a philosophy that says love is not possible?  

Peter

#6, Aug 23, 2016 6:24pm

Grammar correction:  "to" should be "too" in "we know too well" above.

Just a note on the same sentence:  It could have been that Sartre was so denied his own subjectivity by his primary care givers, and so gifted a mind, that he pinned down a logically consistent philosophy to explain away his pain, his alienation and to justify his existence exclusively as "being for itself", with no connection to God, in fact no possible God by claiming both "freedom" and atheism as first principles in his existential philosophy.  Total freedom, for Sartre meant anything and everything is permissible, that there is no reason not to be dishonest or morally corrupt.  He felt that man and woman were the creator of values just by making a choice, and that choice was ultimate freedom and a first principle of his existentialism.  

Peter

#7, Aug 23, 2016 6:25pm

What Sartre overlooked here, according to some people (those who recognize their own consciences, or those who have had an experience of remorse, or regret, or conversely, promptings to take action from something greater than them, outside of them that they sensed was good), was that man and woman have a conscience, and as such, that sets them ontologically in a different category than his "being for itself".  Woman and man with a conscience predicates an ontological category which includes God, or Love, operating within man as a real and objective standard for an objective value system for woman and man,  and would at least be a saving grace for those who muster the courage to get on in life as imperfect, while taking honest stock of their conscience in order to start the healing process of their modified "being for itself", with a conscience, with an objective value system, with Love and with God.  Is not that the personalist's challenge now a days?  At the same time, we are not children anymore.  We are adults with "subjectivity deficit disorder":  SDD, and "only subjective opinion disorder":   OSOD.  This requires sensitivity and reasonable compromises.  We'll get there.

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