Reimagining Disability: A Call to Action
Paritosh Joshi and Julia Pappageorge
Joshi, Paritosh and Pappageorge, Julia (2023) “Reimagining Disability: A Call To Action,” Developmental Disabilities Network Journal: Vol. 3: Iss. 2, Article 7.
Reimagining Disability: A Call to Action PDF File
Plain Language Summary
This paper compares models of disability. The medical model believes that people are not “normal” if they have a disability. It blames them for not fitting in. The social model believes society hurts people with disabilities. It wants to create better environments for them. This paper discusses how to do that.
Abstract
This article focuses on how the medical profession, organizations, and universities should incorporate the social model of disability into their regulations and policies to advance justice for individuals with disabilities. Traditionally, disability has been viewed through the medical model, which postulates that one’s individual body or mind is medically impaired and diminishes the person’s quality of life. The model overemphasizes individual difference or disability diagnosis as something that should be treated at an individual level through medical intervention and ignores social factors that impact the development of physical and mental conditions. Moreover, this pervasive attitude towards disability permeates institutions and causes individuals with disabilities to have to adapt to existing environments. Furthermore, it leads to increased stigmatization by placing direct blame on the person for their own disability and results in greater isolation of individuals from mainstream society. Conversely, the social model of disability illuminates the societal barriers that explain one’s disability. By utilizing this framework, the systems that negatively influence people with disabilities will be compelled to change, thus effectively accommodating and empowering them to achieve their potential. This paper discusses the benefits of the social model of disability, such as its role in fostering socially equitable outcomes and systemic changes that result in more understanding attitudes. In doing so, this work will illuminate how the social model can help redefine disability. More significantly, the social model of disability will propel people to move from a mindset of ostracization and derision to empathy and compassion. Along with discussing what existing entities have successfully included ideas from the social model, this work explores possible implications and offers a roadmap to advocate for individuals with disabilities.
Introduction
Throughout history, societal tolerance and acceptance of people with disabilities has progressed. Nevertheless, despite several strides made during the Disability Rights Movement, individuals with disabilities continue to experience barriers in their daily lives at both interpersonal and systemic levels. This evolution can be observed through the utilization of multiple models to examine how the meaning of disability has changed, and who or what is centered when the topic is discussed. The medical model claims that individuals with disabilities must adapt to the environment around them, while the social model forces people to change the systems that cause disparities between individuals with disabilities and able-bodied individuals. While the medical model continues to be embraced by institutions, the social model is more powerful and will encourage bold change. Along with making this assertion, this work hopes to provide an overview of these two models of disability while emphasizing the need for transformative policies for the future. However, in order to do so, it is imperative to first examine the history of disability models to understand their impact.
Historical Use of The Medical Model
For decades, the medical model has been the default model of disability. This model believes that a disability is “inherently pathological” and aims to ensure that the individual can operate as “…close to ‘normal’ as possible” (Olkin, 2022). The model originated from the middle of the 19th century, when one’s disability was blamed on their body and considered to be deviant from the rest of society (Retief & Letšosa, 2018). The medical model has been utilized within the field of medicine, and it has been applied by placing the responsibility on medical professionals to treat a person who has a disability (Bunbury, 2019). Furthermore, the model asserts that if medical professionals fail to correct this disability, then the individual will be restricted in how they can participate in society. Thus, the focus tends to be on targeting their limitations (University of Oregon, Division of Undergraduate Education and Student Success, n.d.).
While the benefits of the model include understanding the impact of disabilities and repercussions on daily life, it nevertheless marginalizes and promotes an exclusionary attitude. In other words, the model reinforces negative stereotypes about individuals with disabilities and creates a perception that they are of inferior value (Bunbury, 2019) and has widespread consequences. For instance, as a result of its application in the field of health, it yields a limited focus on one’s strengths and abilities and it fails to empower them (Swaine, 2011). Furthermore, studying disability from a medical perspective can result in attributing blame toward the individual rather than examining the additional factors that caused the disability to manifest (Linton, n.d.). One’s disability is inherently viewed as a problem that needs to be solved, which could lead to more stigmatization (Lacke, 2021). In light of this framework’s weaknesses, the social model has been emphasized as a means to examine disability.
Historical Use of the Social Model
In contrast to the medical model, the social model of disability emphasizes every person’s inherent right to dignity and belonging. The social model states that society disables people, not one’s physical, mental, or neurological impairments (Oliver, 2013). By addressing barriers to access and equality first, the social model aims to ameliorate the social, environmental, and attitudinal hurdles that restrict people from achieving self-determination and freedom (Burchardt, 2004). Additionally, the social model offers a framework that institutions and lawmakers can use to examine the complex ways ableism negatively impacts the lives of people with disabilities. Moreover, it can help develop solutions that ensure protections, respond to breaches of people’s rights, and create environments that are free from discrimination.
Until the Disability Rights Movement of the 1960s and 1970s, disability in the U.S. was largely viewed as an individual’s own medical issue. Across America and Europe, disability advocates disapproved of the extensive use of the medical model and challenged the social stigma it promoted (National Disability Arts Collections & Archive, 2018). Yet, as the Civil Rights Movement gained traction, disability activism groups organized in solidarity with other marginalized groups to secure equal rights for individuals with disabilities (Anti-Defamation League [ADL], n.d.). In 1974, The Union of the Physically Impaired Against Segregation (UPIAS) and The Disability Alliance, a disability rights group in the United Kingdom, outlined and published new definitions of disability that informed the social model (UPIAS & The Disability Alliance, 1976). In UPIAS’ view, disability came from the alienation that physically impaired people face in society, not as a result of their bodies themselves (Davis, 2016). In sharp contrast to the medical model of disability, UPIAS’ document states that peoples’ impairments did not require medical intervention or cure, but rather a society that lacked accessible services, public spaces, employment, transit systems, and educational opportunities for all (UPIAS & The Disability Alliance, 1976). Moreover, this model underscored that lack of access was reflective of a society that does not value the full participation and livelihood of individuals with disabilities because of its embedded ableism.
UPIAS highlighted the interlocking social conditions that exclude people with disabilities from society (Durell, 2014). In their seminal document, Fundamental Principles of Disability, Union of the Physically Impaired Against Segregation (UPIAS, 1976) distinguished impairment from disability, defining impairment as “…lacking part of or all of a limb, or having a defective limb, organ or mechanism of the body” (Oliver, 1996, as cited in Goering, 2015, p. 135). Conversely, they defined a disability as
the disadvantage or restriction of activity caused by a contemporary social organization which takes no or little account of people who have physical impairments and thus excludes them from participation in the mainstream of social activities. Physical disability is therefore a particular form of social oppression. (p. 135)
Resultantly, they demonstrate how disability is a socially constructed concept that gains hegemonic power when the social, built, and institutional environments are inaccessible for people with impairments (Eisenberg et al., 2017; Sullivan, 1970).
To secure autonomy and accessible services for people with disabilities, activists, allies, and advocacy groups collaborated to act against discriminatory laws across the U.S. An essential philosophy of the Disability Rights Movement stemmed from the Independent Living Movement in the U.S. It emphasized the importance of services being controlled by people with disabilities (Barnes, 2003). In addition, people with disabilities are best equipped with the lived experience and expertise to decide what liberation for and by their communities should look like (National Council on Independent Living, 2012). Thus, a crucial tenet within the social model is centering the leadership of people with disabilities to determine what services and supports are necessary to live independently (Powers et al., 2002). These examples illustrate how the social model contributed to policy development and how it can continue to be utilized for greater societal progress.
Applications of the Social Model
The most significant piece of legislation passed since the Disability Rights Movement took shape was the Americans With Disabilities Act (ADA) of 1990, which provides comprehensive protections for people with disabilities in the hiring process, and ensures reasonable accommodations are fulfilled by employers and postsecondary institutions (Stein & Stein, 2006). The ADA embodies the social model in that it aims to protect people from the disabling barriers to employment. Provision of workplace accommodations by employers such as workable technology, modified scheduling, and assigned tasks has been proven to enhance productivity and job retention for employees with disabilities (Kim & Rhee, 2018; Macdonald-Wilson et al., 2008). Nevertheless, nearly 30 years later, the unemployment rate is double for people with disabilities compared to those without disabilities (Vornholt et al., 2017).
There are harmful biases held about the abilities of employees with disabilities, including perceiving individuals with disabilities as less achieving (Vornholt et al., 2017), less capable, and less employable (Bonaccio et al., 2019), or that providing reasonable accommodations will be more costly for companies (Kaye et al., 2011). Such negative attitudes result in distrust for people with disabilities (Strindlund et al., 2018). This stigma is a remnant of the medical model because it positions disability as something to fear, and therefore, leads to prejudice, ostracization, and discriminatory behavior towards employees with disabilities (Bonaccio et al., 2019).
A facet of the solution to end disability-based discrimination in the workplace is for companies to reflect on their policies, create internal changes that align with ideas from the social model, and more importantly, make the cultural and organizational shifts to foster an accessible environment (Macdonald-Wilson et al., 2008). Without adapting the social values to be disability-inclusive and humanity-affirming for all workers, workplace accommodations alone do not achieve equity among employees and, moreover, compromise the employee’s sense of belonging.
One organization that has made strides to create a disability-inclusive work culture is Microsoft Corporation. In 2015, a study on the challenges faced by neurodiverse software developers revealed that many felt challenged by interpersonal communication at work, maintaining eye contact with interviewers, and interpreting the emotions of coworkers (Morris et al., 2015). Hiring managers noticed that highly qualified and skilled candidates who have autism were not getting the role (Kennedy et al., 2019). As a result, they collaborated with autism awareness groups to change their interview process to be more inclusive as well as better highlight candidates’ skill sets. These small shifts eventually developed into the Microsoft Neurodiversity Hiring Program, which recruits neurodiverse candidates and utilizes a strengths-based skills assessment for hiring based on the belief that “…neurodivergent individuals strengthen a workforce with innovative thinking and creative solutions” (Neurodiversity Hiring | Global Diversity and Inclusion at Microsoft, n.d.).
Another way workplaces have utilized ideas from the social model to benefit their companies and employees is by offering remote work options during the COVID-19 pandemic (Martel et al., 2021). The telework option provides flexibility for many people with physical and mental impairments who face additional challenges commuting to work, or experience flare-ups due to chronic illness (Schur et al., 2020). Along with these policies, Accenture conducted a study and found companies with well-designed accessibility practices correlated highly with performance measures, shareholder returns, and employee satisfaction rates. Creating an accessible workplace means considering the impact and accessibility of existing procedures, developing a strengths-based culture where all people are valued and differences are celebrated, having an in-person, built environment that is maneuverable, and a smooth accommodation process (Accenture, 2018). These are just a few measures for integrating the social model into the workplace that benefit all employees and improve overall success.
Additionally, the field of medicine can better adopt the social model, particularly because medical professionals have the opportunity to create a healthy balance between discussing the impact of disability while advocating for individuals who experience them (Goering, 2015). While there is a hesitancy among individuals with disabilities to discuss the problems that their impairment may cause, ensuring they can talk openly about their struggles is critical; furthermore, by listening to their experiences, established viewpoints about disability can be questioned (Goering, 2015).
Finally, universities must incorporate ideas from the social model into their practices. For instance, one paper highlights the barriers faced by individuals with disabilities in a South African educational institution—such as inaccessibility to facilities and exclusion from academic activities. In order to tackle these roadblocks, recommendations include more autonomy, easier availability for transportation, and accommodations for students with disabilities (Tugli et al., 2014). It is imperative for educational institutions to assess embedded inaccessibility and provide necessary accommodations. This approach can also be observed in other higher education spaces. The University of Arkansas at Little Rock, along with other universities, has moved towards incorporating concepts from the social model into their policies. Along with modifying the language in the name of their office, they also changed their mission statement in order to ensure that it reflects a more collaborative, newer approach and thinking towards working with students who have disabilities (Thornton & Downs, 2010).
Implications
Beyond the need to examine disability from a multifaceted lens within the field of medicine, incorporating the social model into disability practices is intertwined with disability justice and larger movements to fight for liberation. For example, the social model itself could be studied within the context of the biopsychosocial model, which includes the social model in its framework (Farre & Rapley, 2017). Pioneered by George Engel, the model would include investigating every factor that results in illness, thus studying biological variables along with psychological and social variables. The biopsychosocial model could also be paired with the Black feminist model of disability framework, which includes taking an intersectional approach “…that considers race, gender, and disability to address the gaps in both Black Studies and Disability Studies” (Bailey & Mobley, 2019, p. 19). Through this lens, disability is viewed as a socially constructed principle and is understood through the historical marginalization of Black communities within medicine. Hence, culturally competent and responsive services ought to be formulated in order to comprehend the unique experiences faced by Black people, women, and other vulnerable populations.
Furthermore, the social model is tied to broader issues on a global scale. For example, discussions about societal factors faced by people with disabilities, such as “worsening conditions of poverty, unemployment…lack of access to adequate housing, healthcare, nutrition, and transportation…” among other inequities (Quirici, 2019, p. 284), can illuminate the interconnectedness of disability with other social problems. Through recognition of these issues, mobilization and organizing can take place, as well as a stronger response to tackle ableism and bias against neurodiverse people.
Future Directions
The future of the disability justice movement necessitates the incorporation of multiple models of disability, challenging ableism within academic spaces, and a stronger review of recent critical disability studies literature. For too long, the concept of disability has been viewed through the medical model, which considers disability a problem to be solved (Goering, 2015). As a result of overutilizing this perspective, prominent cultural attitudes and systemic inequities affecting these individuals have been maintained, even as a bold change in how each of us views disability is still possible.
Next, given the underrepresentation of individuals with disabilities in academia, academic culture must be challenged. For example, despite the acknowledgement that actions taken during the pandemic have mitigated the barriers they have faced, researchers with disabilities have experienced exclusion from “…classrooms, laboratories, fieldwork and conferences” (Powell, 2021a); hence, it is imperative to empower them and illuminate their struggles to achieve reform, especially since there is very limited representation of them among recent STEM Ph.D. graduates as well (Powell, 2021b). This step could be taken along with encouraging academics to embrace activism for individuals with disabilities with their scholarship, particularly since research initiatives can and ought to be inclusive.
Along with incorporating various models of disability into organizational practices and creating an academia-to-advocacy pipeline, current critical disability studies literature must be reviewed further. Disability status is indubitably tied to other intersecting systems of oppression, despite the fact that these other identities are often ignored in disability studies research (Goethals et al., 2015). The interlockings of structural disadvantage faced by individuals with disabilities of additional underserved communities, such as being an ethnic minority, low-income, or LGBTQ+, must be deconstructed in order to make sure that targeted approaches to dismantle ableism can take place.
Conclusion
Overall, the fight for greater disability rights has spanned several decades and resulted in significant reform. Nevertheless, while traditional models of disability have been challenged, there is still work to be done. By transitioning towards the social model of disability and away from the medicalization of disability, individuals with disabilities can experience more inclusion within society and be emboldened to achieve their full potential. Given the benefits of the social model, as well as approaches from the biopsychosocial model and other comprehensive disability models, the Disability Rights Movement can make greater strides towards equality and dismantle institutional barriers once and for all.
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