What is Lived Experience in the Philosophy of Disability? An Extension of the Overthink Podcast

Difficulty: 3rd Year Undergraduate/Masters/PhD

Contents

1. Contents
2. Introduction
3. A History of Disability Rights
4. Importance of Lived Experience to the Philosophy of Disability
5. Brief Advert
6. How has Lived Experience Shaped Disability Activism?
7. The Lived Experience of Disabled People, Phenomenology and Epistemology
8. Limitations of Lived Experience within Disability Groups
9. References/ Further Reading

Introduction

Lived experience is a buzz word within the philosophy community currently. It has been identified as one of the most important tools for minorities to attack structures that have been used to oppress them in the past. However, there has been little examination of what lived experience is and where it has come from. On their excellent podcast Overthink, Ellie Anderson and David Peña-Guzmán tackle the question of where lived experience came from and the role it plays within philosophical debates (this post is best read after listening to the episode here).

As part of this, Anderson created a graph from the google n-gram tracker that tracks the increased use of lived experience over time:

From this graph, the podcast discusses lived experience for women, LGBTQ+ and BAME individuals and how the civil rights movements were influenced by the idea of lived experience. They also track the beginnings of lived experience within phenomenology and epistemology. However, a full picture of lived experience cannot be achieved without studying disability groups, who have a special link to lived experience. This post will thus extend the work of Anderson and Peña-Guzmán, look at the history of disability activism, examine how the philosophy of disability is dependent on lived experience and how it is used in modern disability scholarship.

A History of Disability Rights

The 20^th century was particularly transformative for disability rights. It began with three mass disabling events. The First and Second World Wars led to a significant increase in the number of disabled people within society. This was paired with the Spanish Flu Epidemic, which was a similar epidemic to the Covid-19 epidemic but mostly targeted younger adults. As such, there were larger numbers of disabled people at the start of the century.

Despite this, there treatment of disabled people was cruel, particularly with the wide use of eugenics.  Eugenics is a policy that conserves ‘good genetics’ while eliminating ‘bad genetics’ – with disabled people traditionally being placed in the bad genetics category. This was a globally accepted policy until after the Second World War, where the Nazis created the T4 programme that was used to murder 70,000 disabled people in the name of eugenics. Further, society had not made relevant accommodations for these individuals to take part in society.

The struggles of disabled people saw the beginnings of disability activism as early as the 1920s with blind people marching for their rights in the UK. During the 1960s, disability activism gained steam with groups such as the Independent Living Movement that arose in California and was led by university students. Disability activism became even more prominent in the 1990s with the Capitol Crawl Protest in America which protested the delays in passing the Americans with Disabilities Act in America. Wheelchair users got out of their wheelchairs to crawl up the steps of the Capitol building in order to get their message across. This event is now the basis for modern-day Disability Pride.

The graph correlates to these events. The use of lived experience begins at the same time as the mass disabling events in the 1910s and 1930s. It then rises in the 1960s with the establishment of Civil Rights Movements in the 1960s and continues drastically upwards from the 1990s onwards with the Capitol Crawl Protest. But this could be a coincidence. An examination of the philosophy of disability and how it is linked to lived experience is needed.

Importance of Lived Experience to the Philosophy of Disability

As mentioned previously, lived experience is important to all minority groups. However, it has a particular importance to the philosophy of disability.

To understand the link, out-dated models of disability need to be considered. Historically, disability has been defined by how non-disabled people have viewed disabled people. This led to the medical medical model of disability. From the medical viewpoint, non-disabled people saw disabled people as inherently flawed, where any struggles that the disabled person faced was the result of the person themself. As such, non-disabled people determined that the lived experience of disability was a life filled with suffering and tragedy. It was in the interest of disabled people to actively treat disabled people to make them ‘normal’ or, in the case of eugenics and the Nazis, eliminate them.

Such attitudes embedded themselves in the structures of society. Disabled individuals were excluded from decision-making due to the assumption that they didn’t have the cognitive abilities to make decisions for themselves. However, due to disabled people being unable to use their lived experience to inform policy, the policies created were significantly damaging to disabled people, such as the eugenics policies of the Nazis.  

Disability activism has primarily focused on challenging these narratives from lived experience. Disability justice argues that disability is not a tragedy and or always involves the suffering of the person. Instead, disability can be neutral in the way it contributes to quality of life. It can either be positive or negative but is not inherently so. This is known as a value-neutral approach towards disability.

Part of the reasoning for taking a value-neutral approach to disability arises from the social model of disability (developed in the 1960s) and argues that disabled people are not inherently broken but instead are limited by the exclusionary attitudes of society and its structures. For example, a wheelchair user may suffer in a society where there are only stairs. Under a medical model, it would be argued that this makes the wheelchair user disordered. As such, they need to be treated until they can walk again or they are ’defective’. However, the social model instead identifies the problem with the fact that society was designed by non-disabled people and is thus exclusionary. The wheelchair user would be able to move about fine if there were ramps. There is nothing wrong with being a wheelchair user. It is merely a different way of getting around. It is thus society that needs to change, not the person themself.

Consequently, lived experience is key for disabled communities in order to change structures within society but also to challenge incorrect notions of the quality of life disabled individuals have.

Brief Advert

How has Lived Experience Shaped Disability Activism?

The impact of lived experience can be seen as early as the 1920s with the blind marches. One of the mottos for the movement was ‘justice, not charity’. Within this simple idea, we can see the challenging of non-disabled people’s attitudes about the quality of life of blind people. The people marching didn’t view their lives as a tragedy that people should pity them for. However, they did want the accommodations that they deserved. The protests thus represented a demand of disabled people for others to listen to their lived experiences to establish their quality of life.

In the 1990s the ‘nothing about us without us’ slogan was started within disability movements in South Africa but quickly spread to become a global slogan for the disability movement. At the 2007 UN Convention for the Rights of People with Disabilities (one of the first of its kind), the moto was used to demand that the lived experience of disabled people were actively listened to so the stuctures of society could change to accomodate disabled people.

The Lived Experience of Disabled People, Phenomenology and Epistemology

As mentioned in the podcast, lived experience is strongly associated with phenomenology – the study of conscious experience. The podcast goes into more detail, but it is important to note that the existentialists were working at a time where questions about disability were strongly present. Part of the fueling of the existentialists was questions around the world wars and how humanity could come to terms with the aftermath, including greater amounts of disabled people.

Merleau-Ponty can be seen as key to modern disability perspectives as they were integral to the development of embodied cognition – a psychological methodology that holds that ways of thinking are influenced by our physical interections with the environment. Merleau-Ponty even goes as far as to use case studies such as phantom limb syndrome, where a person with a missing limb feels sensations even though they no longer have the limb. To study embodied cognition is to study how different bodies impact cognition and disabled bodies are different to what is considered the ‘norm’.

Phenomenology has thus become an important method for disability studies as a background for individuals to explore their own experiences. For example, Toombs’ (1995) paper The Lived Experience of Disability uses existentialist phenomenology to explore what it is like being a wheelchair user due to multiple sclerosis. He details the new struggles he faces when travelling and how his relationship to space and time have shifted. A more modern defence of the phenomenological method for studying disability is done by Carel (2016) in The Phenomenology of Illness, who has written extensively on breathing and her experiences with lymphangioleiomyomatosis.

This has impacted the study of epistemology. For example, Garland-Thomson (2012) has argued that disabled individuals can offer unique knowledge due to how their different bodies interact with the world and is a valuable resource. Disability has also been examined through the lens of feminist epistemology, including standpoint epistemology. Sprague and Hayes (2000) use the methodology for disability which views the knowledge of disabled individuals as perceptively unique and truer than non-disabled individuals due to the oppression they have suffered.

I should be noted that due caution should be taken with how disability studies and lived experience are understood in relation to philosophies such as feminist epistemology and phenomenology. Sometimes these studies are attributed with developing a philosophy of disability. However, as demonstrated by this post, these ideas have been embedded in disability communities well before more formal philosophies came along. It is important to understand disability studies on their own terms rather than dependent on other philosophies. The relationship is thus two strands being sewn together due to their commonalities rather than the creation of something new.

Limitations of Lived Experience within Disability Groups

As the podcast notes, there are limitations to the use of lived experience to justify arguments within disability justice. As Wendell (1996) argues, the study of disability has the heterogeneity problem. It is difficult to pinpoint a singular unifying factor that unifies disabled people and their experiences. Disability advocacy has often been dominated by individuals who subscribe to the social model. However, there are disability groups who have lived experience that do not align with a socially constructed version of disability. They have the completely opposite experience of those who do. Even for those who do ascribe to a social model, they would not argue that this knowledge is somehow superior knowledge. It is merely different or value-neutral.

References/ Further Reading

Anderson, Ellie, and David Peña-Guzmán. n.d. “Lived Experience.” Overthink. https://open.spotify.com/episode/0bJyhafHQOrRJ2OLaDaFI1.

Bakewell, Sarah. 2016. At the Existentialist Café: Freedom, Being, and Apricot Cocktails with Jean-Paul Sartre, Simone de Beauvoir, Albert Camus, Martin Heidegger, Karl Jaspers, Edmund Husserl, Maurice Merleau-Ponty and Others. Other Press.

Barnes, Elizabeth. 2016. The Minority Body: A Theory of Disability. Kettering: Oxford University Press.

Carel, Havi. 2016. Phenomenology of Illness. Oxford University Press.

Deegan, Patricia E. 1988. “Recovery: The Lived Experience of Rehabilitation.” Psychosocial Rehabilitation Journal 11 (4): 11–19.

Garland-Thomson, Rosemarie. 2012. “The Case for Conserving Disability.” Journal of Bioethical Inquiry 9 (September): 339–55. https://doi.org/10.1007/s11673-012-9380-0.

History. 2010. “Spanish Flu – Symptoms, How It Began & Ended.” History.Com. 2010. https://www.history.com/topics/world-war-i/1918-flu-pandemic.

Kaczmar, Dawn. n.d. “Blind Disability Activism: The Blind Marches of the 1920s and 1930s.” Pro Quest.

KIM, SUNTAE, EVAN POLMAN, and JEFFREY SANCHEZ-BURKS. 2012. “Opinion | When Truisms Are True.” The New York Times, February 25, 2012, sec. Opinion. https://www.nytimes.com/2012/02/26/opinion/sunday/when-truisms-are-true.html.

Little, Becky. 2020. “Activism Behind the Americans with Disabilities Act Included the ‘Capitol Crawl.’” History.Com. July 24, 2020. https://www.history.com/news/americans-with-disabilities-act-1990-capitol-crawl.

Meriah. 2022. “A Short History of the Disability Rights Movement.” Meriah Nichols (blog). April 28, 2022. https://www.meriahnichols.com/a-short-history-of-the-disability-rights-movement/.

National Democratic Institute. 2022. “From ‘Nothing About Us Without Us’ to ‘Nothing Without Us’ | National Democratic Institute.” 2022. https://www.ndi.org/our-stories/nothing-about-us-without-us-nothing-without-us.

Petronis, Caroline. 2023. “Disability Rights Movement | Duke Social Movements.” 2023. https://socialmovements.trinity.duke.edu/movements/disability-rights-movement.

Saxton, Marsha. 2006. “Disability Rights and Selective Abortion.” In The Disability Studies Reader, edited by Lennard J. Davis, 205–115. Routledge.

Shakespeare, Tom. 2006. “The Social Model.” In The Disability Studies Reader, edited by Lennard J. Davis, 197–204. Oxford: Routledge.

Sprague, Joey, and Jeanne Hayes. 2000. “Self-Determination and Empowerment: A Feminist Standpoint Analysis of Talk about Disability. American Journal of Community Psychology, 28(5), 671-695.” American Journal of Community Psychology 28 (November): 671–95. https://doi.org/10.1023/A:1005197704441.

Toombs, S. Kay. 1995. “The Lived Experience of Disability.” Human Studies 18 (1): 9–23.

United States Holocaust Memorial Museum. n.d. “People with Disabilities — United States Holocaust Memorial Museum.” Accessed April 13, 2023. https://www.ushmm.org/collections/bibliography/people-with-disabilities.

Wendell, Susan, and Annette Junemann. 1996. The Rejected Body: Feminist Philosophical Reflections on Disability. Florence, UNITED KINGDOM: Taylor & Francis Group. http://ebookcentral.proquest.com/lib/bham/detail.action?docID=1111564.

Wilson, Phillip. 2023. “Eugenics | Definition, History, & Facts | Britannica.” March 29, 2023. https://www.britannica.com/science/eugenics-genetics.