Wednesday, July 24, 2013

Social Justice: What would Dr. Kielhofner say?

This post is a follow up to my post earlier this month about the use of a public health model for occupational therapy.  The issue of public health models is directly linked to the issue of inclusion of Social Justice in the AOTA Code of Ethics which states (in part):

SOCIAL JUSTICE

Principle 4. Occupational therapy personnel shall provide services in a fair and equitable manner.
Social justice, also called distributive justice, refers to the fair, equitable, and appropriate distribution of resources. The principle of social justice refers broadly to the distribution of all rights and responsibilities in society (Beauchamp & Childress, 2009). In general, the principle of social justice supports the concept of achieving justice in every aspect of society rather than merely the administration of law. The general idea is that individuals and groups should receive fair treatment and an impartial share of the benefits of society. Occupational therapy personnel have a vested interest in addressing unjust inequities that limit opportunities for participation in society (Braveman & Bass-Haugen, 2009). While opinions differ regarding the most ethical approach to addressing distribution of health care resources and reduction of health disparities, the issue of social justice continues to focus on limiting the impact of social inequality on health outcomes. 

This ethical requirement has birthed a 2.5 year 600+ post monstrosity of a conversation on the OT Connections website, and the debate seems far from over.  A core issue remains: how exactly are we to operationalize this social justice requirement?  How is an occupational therapist supposed to follow the general idea that recipients of service receive fair treatment and an impartial share of the benefits of society?

In order to understand how we may have arrived at this point I went back and scanned my journals for evidence of beginning conversations about this topic.  It is true that international occupational therapy scholars have been dabbling in public health models and social justice concepts for quite some time, but I wanted to find a point in time when we took a turn down this road in the American occupational therapy literature.

One of the earliest articles that I found that began to dance around this issue was Kielhofner (2005) Rethinking disability and what to do about it: Disability studies and its implications for occupational therapy.  I found the article to be extraordinarily even-handed in acknowledging that the occupational therapy field could probably learn something from the field of disability studies, particularly related to our understanding of disability and how we should position ourselves to respond to it.  However, Kielhofner also identified many inherent conflicts between the disability studies philosophy as opposed to the dominant culture's perspective on disability, what people actually wanted at different points in their injury/illness/disability experiences, and how all this relates to models of occupational therapy practice.

Another interesting article in this particular journal was written by Paul-Ward, Kielhofner, Braveman, and Levin (2005) Resident and staff perceptions of barriers to independence and employment in supportive living settings for persons with AIDS.  This article draws sharp distinctions between resident perceptions of barriers (being more systems-oriented) and staff perceptions of barriers (being a combination of systems and personal/client factors).  The authors suggest that there are no clear answers about how to resolve these differences, although they state that some integrated understanding of disability studies within a Model of Human Occupation (MOHO) context might be fruitful.  Again, this article seems to be rather even handed.

In my understanding of MOHO, there is little need to integrate some new model because MOHO itself is based on a broad General Systems Theory framework where these broad considerations are supposed to be already happening.

The issues raised by those who adopt a Disability Studies perspective are very closely aligned to the social justice model in that the focus of problem identification is inequity and oppression by powerful system forces and less attention is paid to personal or client factors.  These initial articles acknowledged disability studies concerns, but something happened along the way to finding and articulating a practice model.  Rather than integrating this information into OT practice models, some academicians took a road of adopting the Disabilities studies models - and turned them into conversations about occupational (social) justice, occupational deprivation, and so on.  These conversations have not served practice well.

The question left in the wake of this move toward public health/social justice/disability studies models is 'how does this translate for practice?'  The 'Social Justice' AJOT edited by Braveman and Bass-Haugen (2009) doesn't seem to provide clear enough guidance on how everyday clinicians are supposed to integrate a social justice requirement into practice.

I have already roundly criticized the Blakeney and Marshall (2009) article on water quality and how OTs should consider social action at rallies and boycotts as part of their practice.  Current readers are still referred to that discussion for background.  Rather, I would like to focus on the article by Paul-Ward (2009) Social and occupational justice barriers in the transition from foster care to independent adulthood.  The reason why this article is interesting is because the author previously co-wrote the article with Kielhhofner and Braveman and Levin that seemed rather even-handed as described above.

The 2009 Paul-Ward article has a different tone than the 2005 article.  In the more recent article the very notable emphasis is on problems within the systems designed to provide care and transition services to children in foster care and it is not on the personal/client factors of the children or their families.  The article states

Using a social and occupational justice lens to analyze the barriers to successful transition out of the foster care system, it becomes clear that many of the challenges that these youth face result from the bureaucratic system in which they are placed... independent living services...are underused, especially because they are not designed to be meaningful for teenagers...foster care agencies typically do not have access to the type of facilities necessary for the implementation of hands-on learning experiences...the preliminary findings from this study highlight the need for radical changes in the overall structure of the foster care system... stakeholders in the foster care system need to set aside agency and personal agendas to design a system of care that views all children as fully participating members of their communities and provides them with equal opportunities to achieve self-identified goals...the preliminary findings from the study described here provide a strong example of the social and occupational justice issues that must be addressed.

This is such a curious article because for all the platitudes about how the system is not designed to meet the needs of children, there is an absolute shortage of specificity on what the clinician is specifically supposed to do while using this suggested social and occupational justice lens!  First of all, I want to acknowledge that the broken disaster of foster care is absolutely not lost on me and in fact I have studied this extensively.  I have worked directly in these systems for many years.

The article raises many odd points.  As an exemplar, the author states that children in the foster care systems received training for banking and money management but that most participants did not even have a bank account.  I am not certain what OTs are supposed to do about this precisely - many children who are in this population are from very poor demographic groups and they are also over-represented by minorities.  The author states that the children don't trust the banking systems and they did not view the money management information as meaningful, mostly based on cultural differences.  It is absolutely factual that minority and low income demographic groups are un-banked and under-banked at levels approaching the 50-60% level (FDIC, 2012).  In fact, use of alternate financial services (both legal and quasi-legal) is the norm in many of these neighborhoods that I have worked in.  So what exactly are OTs supposed to do about this using our social and occupational justice lens?  Are we supposed to convince an entire culture that they should trust banks?  Should we Occupy Wall Street?  Should we throw in the towel and instead of a money management curriculum we should teach children Pawn Shop Strategies 101?  This is where the article falls flat on its face: after giving us a lens that helps us become outraged about the oppressive banking system that children in foster care don't trust and are not interested in there are absolutely no suggestions about what the next steps should be.

Our old treatment models were just fine.  MOHO itself was just fine.  It helps clinicians frame the problem, the broad general systems theory orientation allows clinicians to understand the big picture, and treatment is directed accordingly to help the person develop skills - and even learn to examine their own values and volitional system that brings them into conflict with the dominant culture.  However, client autonomy kicks right in and the model supports this - it is not our right to force people somewhere they don't want to go.  It is our responsibility to show them their options.  It is their right to choose.

Reed (1984) wrote the classic book Models of Practice in Occupational Therapy.  Although the models listed in the book are moderately dated, the framework she outlined for evaluating models remains highly useful.  In fact, USEFULNESS and PRACTICALITY (p.31) are important concepts that she used to 'rate' the different practice models.

Social justice itself is not a practice model.  It is so poorly described and so frequently misunderstood that at best we can describe it as a concept that academicians are trying to infuse into practice models.  The problem is that there is nothing there to guide practice.  It is not practical and it is not useful.  When we examine the articles in the literature we are told to join protest rallies about water quality, or we are told to become upset because children in foster care don't like the oppressive banking system.  When we ask the Ethics Commission we are told  in their advisory opinion that social justice means we should consider offering services for free.  It is a confused mess of a concept that has no practicality, no usefulness, and it has walked us away entirely from our previously very useful practice models.

So what happened to Kielhofner's measured interest and encouragement to think about keeping our minds open to issues raised by disability studies?  In the years following this initial suggestion we had academicians insert the social justice concept into our Code of Ethics, there have been attempts to re-frame our profession in public health terms, and we have seen encouragement to abandon our traditional models.  There are no social justice practice models to follow - just a strange bandwagon that has caused academics to encourage us to take wild forays into sustainability, politics, climate change, complaints about banking systems and protests against water quality in Kentucky and many other very odd topics.

I think we have taken a wrong turn, and we need to turn back.  I encourage my colleagues in academia to go back and study the Kielhofner article and see how it was a suggestion for measured inclusion so we can be more sensitive.  I don't believe that it was supposed to be a roadmap off a cliff.

As there are folks who will read this who are more attuned to Dr. Kielhofner's thinking than I am, I look forward to their comments on this paper and correcting any misperceptions I might have about his 2005 article.


References:

Blakeney, A.B. and Marshall, A. (2009). Water quality, health, and human occupations. American Journal of Occupational Therapy, 63, 46-57.

Braveman, B. and Bass-Haugen, J.D. (2009). Social justice and health disparities: An evolving discourse in occupational therapy research and intervention. American Journal of Occupational Therapy, 63, 7-12.

Federal Deposit Insurance Corporation (2012). 2011 FDIC National Survey of Unbanked and Underbanked Households.   Retrieved July 24, 2013 from http://www.fdic.gov/householdsurvey/

Kielhofner, G. (2005) Rethinking disability and what to do about it: disability studies and its implications for occupational therapy. American Journal of Occupational Therapy, 59, 487-96.

Paul-Ward, A. (2009). Social and occupational justice barriers in the transition from foster care to independent adulthood.  American Journal of Occupational Therapy, 63, 81-88.

Paul-Ward, A., Kielhofner, G., Braveman, B., Levin, M. (2005). Resident and staff perceptions of barriers to independence and employment in supportive living settings for persons with AIDS. The American Journal of Occupational Therapy, 59, 540-545.

Reed, K.L. (1984). Models of practice in occupational therapy.  Baltimore, MD: Williams and Wilkins.

4 comments:

Dr Pullen said...

The theory behind this post is pretty solid, but I think the whole concept of judging the value of a therapy or procedure based on social justice is far fetched. We should have a way to simply judge the balue in improving outcomes.

Christopher Alterio said...

Dr. Pullen,

Thank you for your comments. Actually, I agree entirely - and I believe that is the point of my objection. Simply having the social justice requirement in a Code of Ethics is misplaced - and we should instead be focusing our efforts that are clinically relevant and not on those that are politically driven!

- A said...

I've enjoyed reading your post (and the previous one about public health models and OT). I'm a 2nd year OT student and discovered the writings of Kielhofner and others in my first year, which has led me to lots of exploration of the intersection of OT and Anthropology as well as public health. I had minored in Anthropology and seem to be drawn to how OT practice and policies affect societies, not just the individual, as the policies and frameworks affect the individual and the way we practice with individuals affects societies in turn as I see it. I'm by no means any kind of expert and am still exploring these topics and how they can be beneficial or how I can incorporate them into my future practice in some manner. In Kielhofner's more recent articles and books, he has discussed the inextricability of OT and politics. From his perspective, when you are working with an individual or group, specifically one who suffers from some sort of occupational deprivation or occupational injustice due to larger barriers outside of their control (e.g. economic policy, social policies etc.), then we are forced to consider the political dimensions of their access to or opportunities for meaningful/purposeful occupations. Such issues do interest me, but I understand that it is not applicable to every OT, particularly in most traditional OT settings in the U.S. What I like about these ideas however, is that it allows those in OT who are drawn to these issues to open that door and explore people's access to occupations and structural barriers impeding that access, not just OT's always trying to put a bandaid on a problem, when the real issue may be far larger and more systemic. This is a huge area to tackle however, and is not always relevant to OT's day to day practice. When I look at healthcare though, I can't help but see the systemic issues and how larger policy and structural issues trickle down in populations and that there are some issues that can perhaps be approached from a "public health" or "social justice" perspective. Hopefully this makes sense. However, I think inherently OT is a social justice oriented practice. We wouldn't be working with people with disabilities if it weren't!

Christopher Alterio said...

Dear A,

I hope that you make your way over the the OT Connections site, continue your study of the issues, and join the conversation there. It is imperative that more people engage these important discussions.