Tom Shakespeare's "Disability Rights Disability Wrongs" (Book Note)

 

Tom Shakespeare, a prominent figure in disability studies, is known for his controversial stance, largely due to his engagement with disciplines outside the field, such as genetics and bioethics. His involvement in these areas has drawn criticism from some quarters of disability studies, which often view genetics and bioethics as inherently antagonistic to disability rights. In his latest work, Shakespeare continues to challenge the status quo, dividing the book into three parts that cover a range of topics.

 

The first part offers a detailed critique of the social model of disability, a cornerstone of disability studies. This model posits that disability arises from societal barriers rather than inherent individual traits. Shakespeare presents alternative perspectives on how disability can be best understood, offering constructive proposals for reconceptualizing disability.

 

The second part delves into bioethical issues related to disability, including prenatal diagnosis, potential "cures" for disability, and questions surrounding autonomy at the end of life. This section is likely to be of particular interest to readers familiar with bioethics, as Shakespeare navigates complex ethical dilemmas surrounding disability.

 

In the final part, Shakespeare explores themes such as care, charity, intimacy, and the role of non-disabled individuals in the world of disability. These discussions shed light on the multifaceted nature of disability and the complex dynamics that shape interactions within disabled communities and between disabled and non-disabled individuals.

 

Shakespeare challenges the dominant perspective of the social model of disability, arguing that it redirects attention away from the bodily experiences of disabled individuals. He contends that while the social model rightly highlights societal barriers, it tends to overlook the significance of impairment in the lives of disabled people. Shakespeare asserts that the focus on social barriers can inadvertently lead to a neglect of individuals' bodily experiences, perpetuating a gaze fixated solely on the external environment.

 

Shakespeare argues that subscribing to the social model can create a gap in knowledge about the experiences of impairment, as it steers research away from understanding the lived realities of disabled individuals. By solely emphasizing social barriers, the model may inadvertently sideline the bodily experiences of disability, limiting our understanding of the multifaceted nature of disability. Shakespeare cautions against dismissing the importance of individuals' bodily experiences, stressing that acknowledging impairment does not equate to medicalizing disability. Instead, he advocates for a balanced approach that recognizes the significance of both social barriers and bodily experiences in shaping the lives of disabled people.

 

Moreover, Shakespeare highlights the limitations of the social model, particularly in its applicability to certain types of disabilities. While the model may resonate with some physical disabilities, it may inadequately address the complexities of other disabilities, such as severe learning disabilities or autism. Individuals with these disabilities may face inherent challenges in participating in community life, regardless of changes to the social environment. Shakespeare emphasizes the importance of recognizing the diverse experiences of disability and the need for tailored interventions that address both social barriers and individual impairments.

 

By acknowledging the limitations of the social model, Shakespeare advocates for a more nuanced understanding of disability that encompasses both social and individual dimensions. He emphasizes the importance of recognizing the bodily experiences of impairment while simultaneously advocating for the removal of societal barriers. Shakespeare's argument underscores the need for a holistic approach to disability that acknowledges the multifaceted nature of disability experiences and embraces diverse perspectives within the field. Through his critique, Shakespeare encourages scholars and practitioners to adopt a more inclusive and comprehensive framework for understanding and addressing disability.

 

 

In part two of his book, Tom Shakespeare critiques the impact of the social model on responses to bioethical issues within disability studies. He argues that the social model's emphasis on societal barriers can lead to dismissive attitudes towards medical interventions, particularly in the context of seeking a cure for disability. According to the social model, disabilities are primarily caused by environmental factors, rendering medical cures irrelevant or even offensive to some members of disability rights groups.

 

Shakespeare illustrates this point by referencing negative reactions towards Christopher Reeve's expressed desire to walk again and seek a cure for his paralysis. The social model's perspective may lead to skepticism or hostility towards individuals seeking medical interventions, viewing such aspirations as undermining the broader goals of disability rights advocacy.

 

Similarly, Shakespeare challenges the simplistic narrative often employed in discussions of autonomy at the end of life. While the social model may attribute desires for assisted suicide to societal discrimination and lack of support, Shakespeare suggests that this perspective oversimplifies complex ethical dilemmas. He emphasizes the importance of respecting individuals' autonomy and ensuring that their wishes are thoroughly considered and honored, regardless of whether they choose assisted suicide or not.

 

By highlighting these examples, Shakespeare underscores the need for a more nuanced approach to bioethical issues within disability studies. Rather than rigidly adhering to the social model's framework, he advocates for a broader consideration of individual experiences and preferences, particularly in sensitive matters such as end-of-life decisions. This nuanced perspective allows for greater respect for the autonomy and dignity of disabled individuals, ensuring that their voices and choices are valued and respected.

 

 

 

In the final part of the book, Tom Shakespeare shifts focus to practical themes central to disability studies and the daily lives of disabled individuals. These include charity, care, intimacy, and the involvement of non-disabled individuals in the realm of disability. Here, Shakespeare continues to critique the social model, highlighting its negative impact on these aspects of disability.

 

One example Shakespeare explores is the rejection of charity as a response to disability, motivated by the social model's emphasis on societal barriers. He acknowledges the historical context, noting that many charitable organizations historically patronized and excluded disabled individuals, perpetuating hostility towards them. However, Shakespeare also presents a more nuanced view, suggesting that charity could play a positive role in supporting disabled individuals if approached in a more sympathetic and inclusive manner.

 

Additionally, Shakespeare advocates for consideration of an ethic of care as a counterbalance to the overemphasis on rights-based approaches within disability studies. He argues that focusing solely on rights may overlook the importance of caring relationships and support networks in the lives of disabled individuals. By highlighting the significance of care, Shakespeare encourages a broader understanding of disability that encompasses both rights and interpersonal relationships.

 

Shakespeare's exploration of these practical themes underscores the complexity of disability experiences and the need for a multifaceted approach to disability studies. By challenging the limitations of the social model and advocating for a more inclusive perspective, Shakespeare invites readers to reconsider traditional assumptions and engage with the diverse realities of disability. Through his examination of charity, care, and intimacy, Shakespeare offers valuable insights into the ways in which disability is understood and addressed in society, ultimately contributing to a more holistic understanding of disability studies.