A Policy Framework to Support Caregivers

Yesterday I presented at a Carleton University conference titled 'More Than Getting By: Putting Daily Life at the Heart of Our Struggles'.   I was one of the few non-academics - most were scholars in the areas of political economy, women's studies, sociology or social work.   My session was titled 'The Costs of Care' and presenting alongside me was Mary Jean Hande who talked about 'Survival and Resistance in Austere Times: Care Work, Disability Justice and Revolutionary Praxis.  As well, Anna Przednowek talked about 'Caring for the Carer of Adults with Intellectual Disabilities: A Policy Anomaly'.  

It was fun.  Talking about the deeper meanings in our personal lives, especially delving into the hardest challenges and placing that experience within the context of philosophy and economics is my idea of a good time.  The general thrust of the morning was 'how can we think about care so that families are supported by their communities and by their country?'

My topic was 'The Capability Approach - A Policy Lens for Extreme Caregiving'.  Here's what I said:

     I am an extreme caregiver and what I have learned is this: trying to keep our son alive while maintaining my own physical and mental health was an impossible task when I tried to do it alone.  One of the greatest sources of my personal stress was trying to negotiate with service providers to access what little help was available - help that wasn't really what we needed in the first place (but it was better than nothing).  I had to find a different policy tool that would enable families to be supported in ways that suited them, given their givens.  What I found was Amartya Sen and the Capability Approach.

       Amartya Sen won the Nobel Prize in Economics in 1998 for his development of the Capability Approach, a tool to assess freedom and wellbeing within circumstances of extreme poverty.  In his Nobel address, Sen said, “The Capability Approach sees individual advantage not merely as opulence or utility, but primarily in terms of the lives people manage to live and the freedom they have to choose the kind of life they have reason to value. 

     The basic idea here is to pay attention to the actual “capabilities” that people end up having.  These capabilities depend both on our physical and mental characteristics as well as on social opportunities and influences (and can thus serve as the basis not only of assessment of personal advantage but also of efficiency and equity of social policies.”  (Nobel Prize Address, 1998)

      For me, Sen’s Capability Approach represents a lens through which I can assess the value of my life, understand my choices in relation to programmes, services and policies that affected us throughout our son’s life.  Sen speaks of the “freedom to live the life you value and have reason to value”.  I had a life mapped out for myself before Nicholas was born, a life that I imagined I valued.  The circumstances of our family life with Nicholas forced me to reconsider my values and my reasons to hold those values.  

     Amartya Sen has focused on issues relating to poverty and justice, but he has also spoken about disability.  At a World Bank Conference on Disability in 2004, Sen lamented the failure of theories of justice to adequately address the issue of disability.  In his keynote speech at that conference, Sen explored the relationship between wealth, disability, freedom and justice.  “Wealth or income is not something we value for its own sake.  A person with severe disability need not really be judged to be more advantaged than an able-bodied person even if he or she has a higher level of income or wealth than the thoroughly fit person.  We have to examine the overall capability that any person has to lead the kind of life she has reason to want to lead, and this requires that attention be paid to her personal characteristics (and this includes her disabilities, if any) as well as to her income and other resources, since both can influence her actual capabilities.  To ground a theory of justice on the informational foundation of opulence and income distribution would be a confusion of ends and means:  income and opulence are things that we seek “for the sake of something else” (as Aristotle put it). (Keynote Speech, Second International Disability Conference, World Bank, 30 November – 1 December 2004.  See www.worldbank.org)

Here, Sen is distinguishing between “earning handicaps” and “conversion handicaps”, or how one is able to convert money into good living.  Giving someone with disabilities, or their caregiver a million dollars doesn’t give them a good life if the money stays in the bank and the individual sits at home unable convert his riches into enjoyable living.  It is easy to see why, for people with disabilities and their families, this line of thinking is extremely helpful in understanding how anyone giving or receiving care can begin to identify and exercise practical choices that nudge individual circumstances toward a life that one values and has reason to value.   Policies that enable people to exercise their capabilities, such as individualized funding, and accessible public transportation, for example, help people to exercise choice and experience life satisfaction. 

In our family, I wanted to be good mother and I wanted to be supported in that role.  But the demands on me resulting from Nick’s disability combined with the demands of the medical, social and educational systems conspired to make me feel overwhelmed and desperate.  The support systems that did exist seemed designed to support themselves, rather than Nicholas, me, and our family. 

Our family survived, but only because of perseverance, a solutions-based approach and innovative and willing community partners who partnered in our advocacy efforts.   I would say that our family remained intact by the skin of our teeth.  We are the embodiment of the saying ‘what doesn’t kill you makes you stronger’.  But we should never have had to fight so hard in isolation to achieve what most people call normal.   In my opinion, the Capability Approach is a good place to start in redesigning a policy framework to support children and adults with disabilities together with their families giving care.