Cheryl J. Widman and Emily L. Casanova
This blog post is part of a series linked to the Evidence & Policy Special Issue (Volume 17, Issue 2): The many faces of disability in evidence for policy and practice. Guest Edited by Carol Rivas, Ikuko Tomomatsu and David Gough. This post is based on the Special Issue article, ‘A sociological treatment exploring the medical model in relation to the neurodiversity movement with reference to policy and practice‘.
A couple of years ago my (Widman’s) son – who is autistic – was going to Sweden to visit family. My nephew, who is deaf, rejected getting together with my son because, after all, my son is not fluent in sign language. My nephew felt that he and my son would not have much in common nor a way to communicate – although as young kids, they were close and found a way to communicate anyway. This caused me to think about what has been going on within the disability community, or more correctly, ‘communities’, and how it got to be so siloed.
Nowhere is disability more dichotomised than within the autistic community. We have folks who celebrate neurodiversity while others eschew it. Some insist on identity-first language while others insist upon person-first. There are those who are hoping for a cure (medical model) while others embrace their autism (cultural model). Autistic culture has become less unifying than factional. If we can’t agree on how to refer to ourselves (‘autistic’ or ‘with autism’), how can we agree on anything else? The feuding is often caustic.
What we need to begin to do is think less about what separates us than what unifies us. A lot of us have felt that the various models of disability lack commonality that appeals to each group of differing abilities, whether visible or invisible. Perhaps the original bifurcation sin resides with the Americans with Disabilities Act, United States disability law which defines ‘a person with a disability as a person who has a physical or mental impairment that substantially limits one or more major life activities’. It could be that what unites us all is our biology as humans with gradient differences – a concept that we explore in our newly proposed Biological Gradient Model in our Evidence & Policy article, ‘A sociological treatment exploring the medical model in relation to the neurodiversity movement with reference to policy and practice‘. It is hard to oppose the notion that we are biological systems – and through the quirks of science or serendipity – we find our biological functions operating along gradients of abilities.
We can all agree that stigma is damaging, that others who may not have walked in our shoes have set up barriers to education, and/or employment, and/or community life that we often struggle to overcome. Remedy often comes through policy and laws, and that is where unity matters the most.
According to the U.S. Centers for Disease Control and Prevention one in four adults reported a disability, whilst the United States Census Bureau (2021) found that as of 2019, 4.3% of children under the age of 18 is disabled, an increase of 0.4% since 2008. In other words, nearly 30% of the US population are disabled, all of whom are impacted by disability policy and law. Now more than ever, we must promote unity of all disability groups to ensure that future policy and laws result in fully integrated participation in school, employment, and community life.
As gradients on a vast spectrum of disability, we can and must move beyond division into ‘physical’ versus ‘mental’ impairment or ‘visible’ versus ‘invisible’ disability, and cultural segregation whether deaf or autistic. Our common purpose is to tear down the barriers imposed by cultural stigma and institutions in order to improve the quality of life for all. Through our unity, we can better campaign for normalisation of disability and new policies as well as laws that improve outcomes for all individuals, not just one segment of an increasingly vast and large number of people within the disability community.
Cheryl J. Widman is a Special Education Instructor and Researcher at the College of Education, Department of Special Education at the University of Illinois at Chicago, USA. Her research interest is in transition and postsecondary education for individuals with Autism Spectrum Disorder (ASD) and developmental disabilities.
Emily L. Casanova is Research Assistant Professor at the University of South Carolina’s School of Medicine, Greenville, USA, working in close conjunction with Developmental-Behavioral Pediatrics in the Department of Pediatrics at Prisma Health. She has research background in neurobiology, developmental biology, and some genetics, dermatopathology and neuropathology, with particular foci on neurodevelopmental conditions such as autism and connective tissue disorders
You can read the original research in Evidence & Policy:
Casanova, E. L. and Widman, C. J. (2021). A sociological treatment exploring the medical model in relation to the neurodiversity movement with reference to policy and practice. Evidence & Policy, DOI: 10.1332/174426421X16142770974065.
Image credit: Shutterstock. Used with permission.
If you enjoyed this blog post, you may also be interested to read: