Disability Creation Process

I'm currently reading the book When the Body Says No: The Cost of Hidden Stress by Gabor Mate. Over the past couple of years, I have becoming increasingly more fascinated with the mind-body connection as my job has expanded from working with students who have "disability" labels to those with "social/emotional/behavioural" labels. When I was taking my Masters and studying inclusive practices for students with "significant disabilities" I would often come across statements about the two categories of students who experience institutional discrimination and then would quickly skim over the material related to this second group so that I could get to my group of focus. I was looking for any material that would embrace the social model of disability.

The social model of disability is a civil right based approach to disability developed by disabled people. It focuses on challenging and removing barriers which prevent disabled people from living full and active lives. These barriers are many and varied and can lead to institutional discrimination. The barriers include such things as inaccessible environments, lack of inclusive or useful education, discrimination in employment, segregated services, poverty, belief in the medical model, prejudice, devaluing, inaccessible transportation, inaccessible information. What we need to do, as a society, is get to a point where it is just natural to design in a way in which barriers do not exist.
Learning and understanding are processes. One of the first things I remember learning in the first neuroscience class that I took in my Masters program was that we need to be thinking about the intersection of "nature" and "nurture" rather than them as separate entities; That interactions between genes and environment shape human development. For a long time we believed that genes were "set in stone" but we are now seeing that experiences actually impact how genes are expressed (turned off or on) which then impacts how the brain develops. We know that certain genes need to be activated at certain times in order to facilitate healthy development. If these genes have been "turned off" it impacts the foundation that future brain development should be built upon.

One of my first thoughts in hearing this was that in our guilt-ridden society this kind of information could quickly become focused on placing blame rather than about a stepping stone to understanding how to better support development. It could create hopelessness in educators as it leads to thinking that if the foundation is not there as a result of early experiences there is nothing that can be done. This morning, while reading this book, I came across this quote that resulted in me thinking back to these initial thoughts...
"While all of us dread being blamed, we all would wish to be more responsible - that is, to have the ability to respond with awareness to the circumstances of our lives rather than just reacting.We want to be the authoritative person in our lives: in charge, able to make authentic decisions that affect us. There is no true responsibility without awareness. One of the weaknesses of the Western medical approach is that we have made the physician the only authority, with the patient too often a mere recipient of the treatment or cure. People are deprived of the opportunity to become truly responsible."
The  line that stood out the strongest is that there is no responsibility without awareness. And this led me back to something I came across at some point but have not explored in too much detail. It has me thinking about the intersection point between the medical and the social model - that point where we acknowledge "impairment" but also recognize that "impairment" is only a disability if the environment has not adapted to it. It lead me back to the "the disability creation process" (image below) and got me thinking about how this connects what I was originally looking at in regards to "disability" labels and what I've been digging in to more recently in regards to "social/emotional/behavioural" labels.
This process recognizes that disability is not a static state as there are several factors continua that come in to play for any individual that ultimately place us in any moment along a continuum from "social participation" to "disabling situation". Situations of social participation correspond to realizing, through the interplay of our personal factors and environmental facilitators, life habits that facilitate inclusive survival and well-being. These life habits include things such as cooking and eating, going to school, working, participation in meaningful leisure activities, living in home and community...etc. The model actually has a list of life habits that should be considered: nutrition, fitness, personal care, communication, housing, mobility, responsibility, interpersonal relationships, community life, education, employment, recreation, and "other habits".  Disabling situations correspond to lack or, or reduced realization of any of these life habits. Examples would be not having a job, not going to the school in the same capacity as what is normative for others, not being able to go out, not being able to live where he/she wants...etc. 

I think perhaps the one thing that is missing from the model is that the interaction between environment and personal factors actually has the ability to change the personal factors if I go back to the idea of genes not necessarily being set in stone. There is not a set point that we start out with and remain at on those continua. I think the key is to recognize that none of the continua in the diagram is static for any individual. 
  • Disability is not a definite status but an evolving notion.
  • It is relative, varying over time, gender, age, context and environment. 
  • It is a situation that can be modified by reducing impairments or developing aptitudes (acting on personal factors) as well as by adapting the environment (acting on environmental factors).
  • When acting on such factors, it is therefore possible to transform a disabling situation into a situation of social participation. 
Realizing the life habits that this model defines as "social participation" results in "well-being".  "Well-being" is not something that matters only for those with "disability" or "social/emotional/behavioural" labels. It matters for all of us. This then shifts our focus to solidarity and creating connections and communities where we realize together the "life habits" that are on the "social participation" end of the continuum. 


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