Saturday, April 15, 2017

Re-post: The Passion from a kid's perspective


A story worth re-posting:

A fairly standard component of my pediatric occupational therapy evaluations is to ask the child to draw a picture of themselves. This assessment technique provides an opportunity to evaluate the child's skill with writing and also is a functional assessment of their cognitive and perceptual ability.

Sometimes kids draw things that just beg to be probed and questioned - as was the case recently. I watched intently as 6 year old Patrick drew a representation of himself, but then he began adding odd details to his picture. First he colored dark spots on his figure's hands and feet, and then added a row of X's across the forehead.

I leaned forward and quizzically asked, "Patrick, what are these marks here?"

He looked at me for a moment and then responded: "Jesus died for you, you know. He got nailed to a cross, in his hands and his feet. My Dad said that he had to wear prickers on his head and it made him bleed."

"Oh," I replied, not knowing what else to say. I figured he was hearing about the Lenten season and Easter. "Keep drawing, Patrick," I added. I was curious about what else he would add to his picture.

I wasn't disappointed. Patrick added a few more shapes to his drawing. The first looked like a cross, so I asked him "And what is this?"

Patrick didn't disappoint my curiosity. "It's the cross, Dr. Chris. That is where Jesus died. And this is all the people that wanted him to die, but now they are really sad." He added a few sad faces to the drawing, around the base of the cross.

At this point I wasn't really looking at his drawing ability; I was just interested in how much this very young child knew about the Passion. These are the kinds of things that can add a lot of texture to an assessment.

I pointed to the next shape, expecting him to tell me that it was where Jesus was buried, and where he rose from the dead. "Tell me, Patrick, what is this over here?"

Patrick looked at me as if I flew in from another planet, and with a look of disbelief on his face he said, "Dr. Chris... That's a square. Don't you even know that?"

These are the things I learn from the children I work with.

Wednesday, April 05, 2017

The meaning of a word cloud

This image caught my attention when I attended the Presidential Address at the AOTA national conference in Philadelphia last week, and it has been tweeted around in occupational therapy circles since that time.


The question is - what does it mean?

The AOTA president discussed population health as a concept that she believes will be integral to occupational therapy's future vision.  Unfortunately, this vision has more to do with a misguided alignment with payment models (Triple Aim) than anything to do with patient care.

This unusual vision has been promoted by other occupational therapists and also discussed extensively in this blog here and here and here and here, to link a few.

What exactly is the meaning of this word cloud?  The initial intent of word clouds was to provide a base narrative analysis of content within written text.  Even at their best they are crude, because the words are presented in a decontextualized format.

In this example the word cloud is a manipulative message driving tool that is mis-used to promote certain ideas over other ideas.  In this particular representation we are led to thinking that 'Population Health" is an important concept and related critically to other concepts including "Care Coordination" and "Triple Aim" and "Outcomes" and "Patient Centered."

The words are neatly arranged in appealing colors and in various sizes so that certain messages will catch our attention.

But what is the source of the data that is used to populate the word cloud?  Are we supposed to believe that these words represent occupational therapy practice?  Or occupational therapy values?  Or something that some academic dreamed up after nodding off during a Donald Berwick lecture?

We are never given that information.   We are simply presented with words, and led to believe that they are important.  We are led into a state of obsequity, and it is assumed that we should just trust the messenger.

In a presentation at the 2015 OT24VX online conference I stated that some occupational therapists are promoting a Fourth Paradigm concept focusing on population health and its relation to the "rights" and "justice" framework.  The occupational justice paradigm, represented in a General Systems Theory framework, looks quite different from the contemporary paradigm that focuses on occupation.  Instead of intervening at the level of the individual the new model suggests intervention at higher levels of social and cultural complexity.  These new models all emerged out of the mid-1990s, a time where we have to consider the impact of the Internet and subsequent globalization of the profession.   Through the proliferation of journals and the increased international communication, occupational science became a world-wide academic discipline.  Suddenly we were contending with concepts of occupational justice, sustainability, climate change, and broad public health - ideas that were very new to an occupational therapy context and that don't always have social and political fit across international contexts. Many people question whether these ideas even fit into occupational therapy practice at all.

There is still little agreement among proponents of these models what all of the ideas actually mean or how they are translated into practice to help people and reimbursed by third parties.  In fact the academics are still writing word cloud articles and admitting that their concepts have no logical coherence or systematization for practice (Hammell, 2017).

That does not seem to dissuade the motivated messengers.

edit: (added) Social media chatter apparently precedes action.  I just learned that a group has created a new forum on OT Connections where they can congregate and discuss their ideas.  The group, predictably, is comprised of almost all academicians and will be functionally sequestered and insulated from feedback from the profession at large via the protective membership paywall of AOTA.  During the business meeting at conference we learned that half of all AOTA members are students who are frequently mandated to join by their academic programs, and a sizable but undisclosed number of other members are their professors.  This creates a questionable context to hold a conversation about practice.  Would the group be willing to move their conversation to a place where more practitioners would be more able to participate?

I encourage population health or public health or occupational justice or social justice proponents to stop feeding the profession these word clouds (whether presented at a conference or in an academic journal) and instead try linking these ideas to real practice where they can be tested against reality of specific care contexts.

The proponents of these ideas should also specifically address the many questions that have already been raised.  Practitioners in the US see that social justice was taken out as an enforceable principle in the Code of Ethics.  They have seen a statement on sustainability go up in flames in the RA.  But they still see leaders promoting these same ideas in context of poorly defined population health models.

Proponents of these ideas need to explain the justification for continued adherence to poorly defined ideas that have been the source of significant professional disagreement.

Reference:

Hammell, K.R. (2017). Critical reflections on occupational justice: Towards a rights-based approach to occupational opportunities. Canadian Journal of Occupational Therapy, 84(1), 47-57. doi: 10.1177/0008417416654501


Tuesday, April 04, 2017

The danger of assuming universal and singular narrative explanations of disability


In a recent article appearing on the CNN website, author Wayne Drash reviews the concept of 'wrongful birth' in context of Lesli, a person who has developmental disabilities.  Drash's profile states that he "specializes in stories off the radar" and that "his passion is to tell narratives about life and the unfolding drama of the world we live in."

It would be more accurate to state that Drash cherry picked one person's perspective and advanced a fiction that serves one ideological perspective.

His initial description of Lesli in his opening sentence tells us everything he believes about her person-hood.  He immediately goes to the 'fetal position' trope that promotes his message of Lesli's helplessness and haplessness.

For just a moment the reader is led to believe that there may be another side of the story to be told as he describes Lesli's joy at having her mother hold her hand - but the author quickly reverts to reporting the pain that Lesli's mother experiences, how she has cried more than anyone how she could barely sleep given the severity of her daughter's condition.  Then we are provided the quote that the mother does not know if her daughter even knows who she is.

The story of Lesli and her mother is framed in context of proposed legislation in Texas that would reverse the decision that allows 'wrongful birth' lawsuits.  Apparently, Lesli's mother won such a suit many years ago based on an argument that the doctor failed to tell her that she had rubella.  The mother states that she would have chosen an abortion rather than "watch her daughter suffer pain."

The testimony in this particular case is that the doctor states he did not think that the mother ever had rubella.  So, there was no 'choice' to offer her.  She won a lawsuit against that doctor for his missed diagnosis.  The money remains in a trust fund for the care of Lesli.

The mother advocated strongly for Lesli over the years, pursuing education related to rubella and its impact on pregnancy, and working to improve the special education curriculum in Dallas and Wichita Falls.

That might have been the narrative for the mother to hold - but her narrative instead is that she wishes that she was never born so that her child would have never been born.

That particular narrative is unquestionably hers to have, but Drash's error is in elevating that narrative without telling any other side of the story.

There is little doubt that this is a story where the mother experiences pain and there is little doubt that she has come to the narrative conclusions that she has come to.  They are as real as the situation that she experiences.  However, that narrative conclusion is not the same narrative conclusion reached by all people.  That is a primary error in this story.  That is also a reflection of the immoral choice  by Drash that cherry picks a single narrative.

What is the alternative narrative?

Lesli's mother might have defined her experiences in terms of selfless love given to a child.  Or of how a single person can take on an entire system and improve education for thousands of other children.  Or of the quality of life that Lesli experiences, exemplified by the simple act of human connection - of holding hands.

We are not given any of that possible narrative because even though these things happened it is not the expressed narrative of Lesli's mother.  Does that mean that the narrative does not exist for others?

All that we are given by the author is that when there is a meaningful interaction with Lesli, she moans.  [emphasis mine.]

"Mom and daughter now hold hands.  Lesli moans."
"Lesli moans through much of the session..."

Lesli's mother has a right to form whatever narrative she chooses.  But there are others.  Not everyone defines their lives in the same way.  Not everyone looks at their child who has a disability and would have chosen elective abortion to pre-empt their perspective on suffering and pain.

If we accept the narrative of Lesli's mother, where are we left?  Would we abort all children who might experience suffering and pain?  Would we eliminate that same pain from our lives?

When we advance a single narrative to the exclusion of others we risk misrepresenting the story.  It is not true, as Lesli's mother states, that people don't care about her daughter.  The article itself reports that Medicare and Medicaid will pay about $200,000.00 for the cost of Lesli's care for the next year.  That policy is an expression of a social value.  That social value is rather clear that many people are caring.

I don't doubt the pain that Lesli's mother perceives, and I am not judging her perspective.  I am just pointing out that it just happens to be a single narrative.  And there are others.

Some parents experience the same pain that Lesli's mother experiences but they do not frame their perspectives in the same way.  In fact, some parents frame their experiences in the exact opposite way and the idea of aborting their child, even though their is suffering and pain, is unthinkable.

The alternate narrative, one that I have had a lot of experience with, reads differently.  The alternate narrative focuses on the love expressed by holding hands.  The alternate narrative focuses on the quality that the child can experience, or the meaning that the parent created out of what seemed like a senseless event.  The alternate narrative sometimes turns the concept of disability on its head and forces everyone else to examine their values!  The alternate narrative does not involve descriptions of fetal positions and moaning.  It is best expressed in the words one parent told me that I will never forget:

So though there were tears, there was laughter more.  
And though there was pain, there was joy more.
And when things seemed bleakest, go... feed the birds.
And the world will right itself.

That is another narrative that exists in the world.  There are undoubtedly even more.  It is good for us to be reminded of this fact when we are reporting on "narratives about life and the unfolding drama of the world we live in."