Allen McNair Exit 47 (2022)
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Defining 'disability'
Current debates within the Disability Studies community on how to define 'disability'.
Through the years, scholars have refined past conceptual theories of the definition of disability. The purpose of refining the definition is to create a more accurate description that best supports receiving any needed support systems to have accessibility and to most efficiently describe the phenomena of disability. At times, past definitions have served as a foundation for discriminatory behavior and segregation. Due to potential implications, such as those, of the definition of disability, it serves an extremely important purpose.
Below is a synopsis of the debate within the disability studies scholarly community. Choose for yourself what you feel most aligned with after learning a bit about each. These descriptions can then become a basis for doing your own research.
Defining the term 'disability' can be just as complex as the wide range of conditions that qualify as disabilities. Many have pointed out the difference between the medical, social and human rights models. In addition to these, Essentialism, Post-structuralism, and Deleuzianism are three more theoretical models which elaborate past theories.
ADA definition:
"(A) a physical or mental impairment that substantially limits one or more major life activities of such individual;
(B) a record of such an impairment; or
(C) being regarded as having such an impairment (ADA)"
Here we see that the ADA definition of disability is focused on a medical condition, an impairment. Implications of defining disability in this way are that the focus is on an issue within an individual, not on society’s contribution to inaccessible spaces. This frame of thinking is linked to a Medical Model and Essentialist theories. Essentialism states that there is a normal body and body which is other than normal, different. The condition of the not-normal body is an abnormality that needs to be fixed. There will always be an outcast in this framing who needs to adjust to be part of the ‘right’ way of being.
“Essentialism states that there is a normal body and body which is other than normal, different.”
Following this line of thinking, the only thing that needs to be changed is the individual. They are not appreciated for their gift or strengths gained by performing in different manners. No one else, no other systems, take responsibility for outcasting the individual. Instead of honoring their way of existing, the focus is on the sickness, illness, or abnormality. Therefore, this definition does not allow for much room to create an accessible society.
Disability Studies scholars responded to Essentialism...
Scholars such as Judith Butler responded to Essentialism with Post-structuralist theories. Michele Foucault and Judith Butler believe that the language we use constructs our daily lives and our entire reality. They argue against the term 'disability' and seek to deconstruct labels.
“It is easier to imagine blindness as the end of sight than it is to imagine it as a different way of being, as a different world” (Michalko, p. 50, 2017) . Here the focus is on living with different senses and strengths that arise from a different perception of the world. The fluidity of not labeling it as a medical condition or an impairment allows one to live without a sense of loss and instead embracing what their body, mind, and perception have to offer.
Disability Studies scholars responded to Post-structuralist Theories...
However, labels can serve an important purpose. One of the main purposes is to communicate and express so that others can understand what we're living through every minute of every day. Scholars such as Tom Shakespeare remind us that disability does not mean that someone is sick. Additionally, that disability is not just a product of discourse or labels, there is a real, embodied experience that impacts that person’s life that will need to be honored with a form of language.
Some implications of Post-structuralist ways of thinking generate conclusions about using assistive devices. Using any support such as medication or hearing aids, can be a way of stating that the body needs to be fixed. A Post-structuralist states one can exist just as one is, the body doesn’t need to be fixed. However, this view doesn’t take into account the positive benefits gained by that individual who uses support in being able to participate to a greater degree in society.
Another issue with deconstructing labels...
Scholars like Aimi Hamraie remind that not owning the label can be related to some of the same issues brought up by the phenomena 'color blindness' where one may say they don't see race. Disability 'blindness' ignores the history of dehumanization, oppression, segregation, isolation, advocacy, and activism, as well as the current state of institutional ableism.
In response to Universal Design, Hamraie states that:
“Because they do not begin from an analysis of oppression, disability neutral discourses fail to capture the relational ethics of disability culture (Hamraie, p. 17, 2016).”
Therefore, it's important to remember that there hasn't been an equal playing field for a very long time. Due to that inequality, people turned to advocacy and activism to educate, provide access, and lessen discrimination. If spaces are made to be accessible, this past and the embodied experience of their condition will still need to be honored.
Interestingly enough, the category ‘disability’ has both othered us and, at the same time, provided the mechanics needed to get needs met in society.
Deleuzian
Deleuzian Disability Studies theories seek to take one out of a fixed state and into a constant state of becoming by analyzing the relationship between structures related to disability. This way of thinking allows for one to receive the support they need at the moment while allowing that to change and morph in time. These are the first theories that begin to apply systems thinking through applying the image of the rhizome from philosophers Gilles Deleuze's and Felix Guattari's theories and applying them to disability. The image of a rhizome becomes a way to map the network of structures impacting and impacted by disability. This form of dynamical systems mapping allows one to consider space for intervention and how that intervention will impact the system as a whole (Feely, 2016).
The Take Away...
The definition of disability has been updated and refined as scholars have discovered the gap in the past description. There is still room for growth. As we alter the definition of disability, the intersectionality of the experience becomes more apparent and so too does the political and social implications of the word.
References
Americans with Disabilities Act 1990
Berghs M, Atkin K, Graham H, et al. Implications for public health research of models and theories of disability: a scoping study and evidence synthesis. Southampton (UK): NIHR Journals Library; 2016 Jul. (Public Health Research, No. 4.8.) Chapter 3, Scoping models and theories of disability. Available from: https://www.ncbi.nlm.nih.gov/books/NBK378951/
Feely M (2016) Disability studies after the ontological turn: a return to the material world and material bodies without a return to essentialism. Disability & Society. 31:7, 863-883.
Hamraie A (2016) Universal Design and the Problem of “Post-Disability” Ideology. Design and Culture 8:3, 285-309. New York: Routledge.
Michalko R (2017) Blinding the Power of Sight. In Boys J (ed), Disability, Space, Architecture: A Reader (1st ed.). New York: Routledge, pp. 48-50.
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