Emerging Thoughts in Disability and Humanness

Emerging Thoughts in Disability and Humanness

Emerging Thoughts in Disability and Humanness

Elizabeth DePoy and Stephen French Gilson

Anthem Press

An imprint of Wimbledon Publishing Company

www.anthempress.com

This edition first published in UK and USA 2022

by ANTHEM PRESS

75–76 Blackfriars Road, London SE1 8HA, UK

or PO Box 9779, London SW19 7ZG, UK

and

244 Madison Ave #116, New York, NY 10016, USA

Copyright © Elizabeth DePoy and Stephen French Gilson 2022

The author asserts the moral right to be identified as the author of this work.

All rights reserved. Without limiting the rights under copyright reserved above,

no part of this publication may be reproduced, stored or introduced into

a retrieval system, or transmitted, in any form or by any means

(electronic, mechanical, photocopying, recording or otherwise),

without the prior written permission of both the copyright

owner and the above publisher of this book.

British Library Cataloguing-in-Publication Data

A catalogue record for this book is available from the British Library.

Library of Congress Control Number: 2021953396

ISBN-13: 978-1-83998-045-9 (Hbk)

ISBN-10: 1-83998-045-1 (Hbk)

This title is also available as an e-book.

CONTENTS

List of Figures

Part 1 Foundations

1.Legitimate and Offending Bodies

2.Bedrock Constructs

3.Looking Back

Part 2 Violations

4.The Offensive Scope

5.The Tool Kit

6.The Language of Violation

7.The Visual Violator

8.Spaces and Places

Part 3 Responses

9.Revising the Illegitimate

10.Reinvention

11.Denial

Part 4 Rethinking Humanness

12.Negotiating Humanness

13.Expansion and Commencement

Bibliography

Index

FIGURES

3.1Elegant bell curve tells an important contemporary story about humanness

4.1Apple watch blinking virtual heart

5.1The heavy breather symbolized on the Apple watch

5.2Creating the prototype—the Bell Curve

5.3Creating the normal human at 2 months

5.4The eye chart

6.1Professional argot and symbolism presented in the biological image

6.2Imagery as text—the word cloud

7.1Tobii Dynavox—the violator tablet

7.2Elegant iPad—cool user tablet

7.3aThe rollator—omnipresent stigma equipment

7.3bThe Afari—elegant mobility support

7.4Reading the hearing aid—charming youth or devalued aged

7.5Jitterbug 2—the senior citizen phone

7.6iPhone fashion

7.7The impaired emoji line-up

7.8Something else body in digital caricature

7.9Zoom whimsey

7.10Even Zoom corrects the violator’s face

8.1Cartooned access—the International Symbol of Access (ISA)

8.2Staired access—main entrance

8.3Ramped access—the bowels of the building

8.4Workout gym for the prototype

8.5The clinic—violators workout here

8.6aThe elder coop

8.6bThe elder coop facade

8.7Elder kindergarten

8.8Elder mess hall

8.9Violating travelers—keep out

8.10Violating traveler welcomed here

8.11Welcome to violating outdoor sports enthusiasts

8.12iPhone—Vitruvian violator

9.1Prepandemic Social Security Administration Clickbait

10.1Reinventing attitude—servicebot

10.2Soundshirt—let there be music for all

12.1LaGuardia Airport fountain—Terminal B: Public access to beauty regardless of sensory style

13.1The activated icon—still othered

13.2Reinventing access—stick to the knitting

13.3Dick Tracy reinvented—haptic footwear

13.4Wrist wear navigation—the Apple watch

Part 1

Foundations

In this part, three chapters introduce the theoretical and historical foundations for analyzing humanness, and the role of the atypical body in determining membership, meaning, and worth.

Chapter 1

LEGITIMATE AND OFFENDING BODIES

Disability has the radical potential to trouble the normative, rational, independent, autonomous subject that is so often imagined when the human is evoked.

—Goodley and Brunswick-Cole (2014, 2)

Answers to the question what is legitimate and desirable humanness is not banter one might hear in public. But, nonetheless, embodied desirability, what we accept as the good life for ourselves, compared to the other who does not fit, and what humanness elements we propose as the object of scrutiny, fixing, or elimination inhere in the commercial, cultural, medical, and social ether of daily life. Holding the hand of the disabled being as alter, this book materializes shrouded history and current literature on disability illustrated by thoughts and praxis, exposing the legitimate human and its opposite. Beyond theorizing for its own aggrandizement, we seek a purpose of provoking thought as the basis for informed action.

For over 40 years, the impairment definition of disability and its associate, age-related decline, referred to as the medical model, have been pommeled by disability studies and aging scholars. Early social theorists focused on and wrested disability away from the impaired body and located it in the terrain of social, attitudinal, political, economic, and even spiritual discrimination (Rembis et al., 2018). Aging theorists recolored Eriksonian notions of reflection and withdrawal from life into a vibrant conclusion chapter in which medical notions of disability, albethey present, were typical but incidental to productive contribution (Lawrence-Lightfoot, 2009; Erikson, 1959). These analyses, including our own thinking, were concerned with the what and how of disability. The what is a definitional debate (Momm & Geiecker, (2011). Scholars ask is disability a decrepit embodied phenomenon, a fait accompli as one moves beyond half-century lived, a social arrangement begetting discrimination, a profit motif, an abrogation of rights, and then provide answers that increase in complexity and bleed into other essentialist intersections about similar questions surrounding human difference and the atypical. Defining what disability is is not a trivial pursuit in that the what beckons the how, or the response.

Different from the impairment or medical model which invites professional surveillance and control, the social model requests change from all but the impaired body. Integrating and activating impairment within a hostile context creates a three-dimensional (3D) canvas on which complex responses can be drawn and offered. The fields that speak to disability are rich in thought and analysis of what and how, but what is nascent, and only recently verbal in disability and aging studies, is the why? Building on an emerging discussion (Goodley and Runswick-Cole, 2014), this book devotes itself to the fundamental why and how questions. The why and how intertwine, proposing the why of disability in its multiple definitional, theoretical, legislative, and other homes, as perceived violations to desirable humanness from minimal to atrocious offense. The how queries, answered both for today and proposed partially for tomorrow, are the raison d'être for time spent developing and fleshing these ideas into words and images. Some of the constructs have already been descriptively broached by several authors, but they beg for full explanatory development as the basis for invention:

Disability is descriptive of any deviation from cultural depictions of humanness and the cult of normalcy. This may take on the form of a physical or cognitive difference, but it may also describe how othering has been used to define defiant cultural behavior. On creating norms and others. Clapton and Fitzgerald (1997) write: In doing this, we have created an artificial ‘paradigm of humanity’ into which some of us fit neatly, and others fit very badly. (Schuelka, 2013, 501)

The degree of violation sets in motion the why answers and the how responses, from reluctant acceptance through the elimination of the offender altogether from the human species (we take on the definition of human, humanness, and related abstracts as we proceed). Viewing the something elses, earning this alter label because of their impaired embodiment is a critical answer to why such bodies have been ostracized, not only from communities, but from contemporary acceptance and public display in the dialogue and activity on diversity. It seems to us that being seen as something else, regardless of its truth value, is a difference to be acknowledged in the diversity dialogues. Given this gossamer apparition lurking behind the scenes in the literature on human difference, theories explaining racism and dehumanization (Hodson et al., 2014) were consulted to begin the search necessary to answer the bigger why question about discrimination against difference. Look at what Perszyk et al. (2019) have to say:

Over the course of our lifetimes, we develop biases about individuals and groups based on their membership in social categories, including race and gender. These social biases reflect cultural mindsets, stereotypes, and prejudices that are pervasive in our communities.

Perszyk et al. begin with the premise that bias contained in the cultural ether invades the unsuspecting child who, by virtue of being a developing person, is a petri dish for inculcating and growing judgment and stereotyping. Similarly argued, but in the evolutionary theory field, Creanza et al. (2017) identify culture as an important evolutionary seat inhabited by beings, which further clarifies values and shapes attitudes. What stands out as most relevant to the relationship between disability and assigned humanness is the critical role of culture in both defining and taking eugenic action. As we discuss later in the book, eugenics, although most often sullied with a bad and often deserving reputation, is not always a bully. Liberal eugenics refer to strategies to improve humanness that are chosen rather than forcibly imposed (Goering, 2015), and thus stay away from murder, genocide, and other monstrous methods. Such eugenic strategies include education, health care, technology, and so forth. Savulescu (2014) is one ardent proponent of choice to use genetic therapy to enhance humans beyond what we consider current normative capacities. Mining the bodies slated for eugenic change, and particularly those subject to authoritative or forced elimination, Goering (2015) tells many stories about desirable humanness and its violators.

As introduced above, and of particular relevance to understanding the why of bodily ejection from humanness, is the literature and inquiry on dehumanization, a less than lovely process of denying that a being born to human parents actually earns the moniker of human (Hodson et al., 2014; Smith, 2020). Illustrating a frequent approach to dehumanization and its lesser cousin infrahumanization, or viewing the other as:

inferior […] dominants typically treat subordinates with paternalistic manipulation, keeping them close and dependent while nonetheless treating them as less human and thus less valuable. (Bain et al., 2014, 103)

We take on this work throughout the book as it forms an important and solid bedrock for unpacking the mechanics of medicalized disability as well as advanced years, assumed to be disabling and thus joining in the undesirable humanness party.

Peering into the near future, or perhaps even the borderlands between today and tomorrow, posthumanism queries the very meaning of human and ethical boundaries (Olmeda, 2019; MacDonald, 2016) that oppose classical humanism, and thus what succeeds us as we think we know ourselves. This broad literature dismisses the enlightened human typically characterized as:

rational, bounded, integral, sovereign, and self- aware. This is the figure to whom rights and citizenship are granted; this is the default figure that grounds and personifies norms of behavior, ability, and health; this is the figure around which we ordinarily construct notions of political and social agency. (Luciano, 2015, 190)

This viable posthuman school of thought is of great relevance to postmodern thinking (MacCormack, 2016; Braidotti, 2019) and ripe for moving beyond the current Anthropocene model person and era in which the enlightenment human has dominated one’s own body as well as the surfaces and spaces in which the body survives. The multilayered slices of the complex present day have been neologized to reflect the primary vectors of concern that affect what is meant by human and what comes after the human and human dominance:

Capitalocene (Moore, 2015), Anthrop-obscene (Parikka, 2015b), Plasticene, Plantationocene (Tsing, 2015), Mis-anthropocene and Chthulucene (Haraway, 2015). These neologisms express an accelerationist tendency and their proliferation evokes both excitement and exasperation for thinkers attempting to account critically for the posthuman predicament. (Braidotti, 2019, 32)

As analyzed later in the book, while posthuman scholarship has great relevance to understanding the why of infrahumanizing the violator body, we do not agree with several of the tenets, nor are we great fans of the moniker. But these points are to be discussed once more groundwork has been laid.

This first chapter sets the theoretical context for the book. We begin by proposing the framework for the work and an overview of the legitimate and offending bodies as contextually embedded. Just some of the questions asked and answered in this book are:

–What embodied characteristics render their owners legitimate, credible, and worthy members of humanity? Why?

–What embodied criteria are legitimate offenders and to what degree?

–How do offending bodies as nonexamples, define the boundaries of humanness and what lies beyond?

–What happens to offenders at diverse levels of violation?

–How can offending bodies be reconceptualized as fully human and aid in the reinvention of humanness itself, with restoration of equivalent human rights and value?

We introduce five couples, all of whom ponder mortality and thus humanness without directly saying so. Each marks a different trailhead to our thinking path about what it means to be human. We meet them again in the final chapters of this book, in which humanness, after being examined on every surface and in each orifice, is reconstituted in a manner that we see as contemporary, future-preserving, viable, and expansive.

Couple 1: Nicolas and Terry—the offender—the atypical neonate

Both 39, Nicolas and Terry were finally able to adopt a child. For them, the designer baby was most desirable, a chubby-cheeked, cute, early developing baby, reaching developmental milestones at light speed. At any hint of nonnormative potential, they rejected enlarging their family, waiting until almost 40 to finally encounter the baby with the most promise for desirable humanness.

Couple 2: The offender—any medical intervention to restore viability?

Couple 2, in their early 50s, made an appointment with their attorney for the sole purpose of signing a do not resuscitate (DNR) order. Under no circumstances will they accept heroic efforts to save their lives, despite there being a good prognosis or cause for intervention. When asked for the rationale for their decision, social burden, finances, indignity, and dependence were identified as the enculturated memes that defined undesirable, and thus illegitimate, humanness and life for this couple.

Couple 3: The offenders—hearing and memory impairment

Lisa, 69, and David (who is 10 years her senior), live in a subdivision in a small middle state town. David has been retired for 21 years and Lisa will retiring from her primary job this year, with plans to continue working elsewhere. Both are able to drive. Over the past 10 years, David has lost some hearing acuity and has noticed that he forgets words and short-term information. Both have DNR orders. Both assert that life is not worth living and thus moved into illegitimate territory if excessive care was required for either. Lisa regularly jokes about putting David in the home if his hearing or memory continues to decline; two illegitimacies not shared by David.

Couple 4: Ruth and Howard—the offender-mobility impairment

Howard and Ruth are in their 90s. They live in an urban apartment on their own, where they have raised a family and conducted the business of their lives for the past 60 years. Howard has been a physically active man throughout his life and it is only in the past five years that he has experienced some mobility difficulty, which resulted in his purchase and now regular use of a rollator walker. For Ruth, Howard’s inability to walk without assistance is an offending characteristic, which she articulates regularly. She sees him as old, decrepit, and going downhill. She can walk upright without assistance, so Ruth is the couple’s legitimate human. Both Ruth and Howard have recently completed DNR orders, each claiming that life would not be worth living if independent mobility were not possible.

Couple 5: Sarah and Sadie—the offender—death

Sarah and Sadie, both 70, live on a farm with their 9 horses and work full time. They have no DNR orders, nor have they any intention to sign any such document despite being urged to do so by hospital providers. To them, they choose any type of life over the loss of the other. In agreement with Harriet McBryde Johnson, they assert that being loved legitimates anybody, no matter how impaired.

With these five perspectives, we now commence theoretical construction beginning with legitimacy theory to envelop and guide analysis of what it means to be human.

Chapter 2

BEDROCK CONSTRUCTS

In this chapter, we provide a smidge more introductory material in our preparatory homework for the reader. We begin with legitimacy, given its starring role in this project. In this context, legitimacy refers to questions about what it means to be a legitimate human, its inferior or its opposite, and interrogate the terrain of who is accepted as a full member in the humanness club: when and when not; why and why not; how and how not. There is no dearth of opinions, each informed by different fields of thinking. A simple biological definition of human, for example, qualifies one as belonging simply by exhibiting the human form, defined by Wittgenstein as legitimacy by virtue of being conceived by human parents (Hanfling, 2002). Of course, there is really nothing uncomplicated about this definition given the many facets of timing, body composition, distinction from species nonexamples, and even technological additions to the organic corpus. In this book we delimit our definition to serve the analysis of the role of impairment and the multidimensional collage of responses to it in crafting humanness.

Enter the application of legitimacy theories to analyze authentic humanness and its nonexamples. Legitimacy is the feature story in Chapter 4, and acts as a trailer here to entice the reader. At the very least, legitimacy thinking lays bare the essential factors that bestow acceptance, membership, respect, and their nonexamples within the context of diverse social systems and arrangements. Applied to understanding the role of impairment in determining who fully or partially passes the humanness test, or who fails it altogether, legitimacy foregrounds the body, behavior, and appearance as the loci of judged explanations and construction of desirability (DePoy and Gilson, 2011).

Legitimacy has both a long history and wide girth. Longitudinally, legitimacy can be traced as far back as the writings of the ancient Greek historian, Thucydides, in 423 BCE, in which questions were posed and answered about the unfolding and moral correctness of power and its acceptance by subordinates. Although legitimacy theory originally had its roots in political theory, it became engorged and expanded its analytic reach way beyond its initial perimeter to fields as disparate as rhetoric, visual culture, and even accounting (Puyou and Quatronne, 2018; Luthardt, 2011). And while there are differences in the application of legitimacy theories to diverse substantive questions, what all have in common is their search for credibility and normative acceptance. That is to say, legitimacy theory examines the basis on which a phenomenon is seen as genuine or authentic, and by nonexample those instances that lie outside of acceptable territory (Puyou and Quattrone, 2018).

Legitimacy theories have posited a range of factors that determine the authenticity or acceptability of laws, rules, or determinations. These elements can be explicit, such as public consensus about validity, or tacit, such as efforts to disguise power brokering (Barnes, 2017; Fallon, 2018; Magalhães, 2021). Among legitimacy theorists, Weber (in Magalhães) is, perhaps, best recognized for his assertion that social order inherent in values, norms, and beliefs cannot be maintained without broad acceptance of these essential elements. Investigating group interaction (Deephouse, 2017), legitimacy theory has the potential to denude the normative beliefs that underpin hierarchies, power relationships, and categorization, and expose the values that imbue category status, including humanness membership and exclusion therefrom.

Building on legitimacy thinking, DePoy and Gilson (2004) proposed the explanatory legitimacy theory to analyze three related elements of legitimate disability classification. This framework is discussed and illustrated in detail in Chapter 4. Rather than political power as its object and subject, explanatory legitimacy theory is concerned with the descriptive and axiological processes of membership acceptance in the disability category. DePoy and Gilson (2004) posited a sequence of description, explanation, and valuation as the process through which an individual was determined to be genuinely disabled and/or accepting of that designation. Description refers to particular appearances, activities, and experiences that catch the watchful eye of the disability classifier, be it one’s self, an onlooker, or a gatekeeper. This initial element of legitimate disability classification is consistent with Hahn (1988) and Quayson’s (2007) assertion of the central role of appearance in disability determination. However, specific to disability membership, DePoy and Gilson identified the explanation(s) for description, not the description itself, as the locus for judgment. Thus, individuals with equivalent descriptions, but different explanations for the descriptive conditions, might experience vastly different classifications. As discussed in Chapter 4, legitimacy is proposed as dynamic, context embedded, and in constant metamorphosis. Here, just consider this simple example, inattention. Explanations such as learning disability or diagnoses such as attention deficit hyperactivity disorder (ADHD) or early dementia beget medical judgment and treatment responses, while the same description attributed to laziness attracts the disparaging stink-eye. Of note is the extremity and degree of control and choice that explains the descriptive phenomenon. Thus, in explanatory legitimacy theory, as it interrogates disability, the criterion for group membership lies in the judgment of the fit not of the description but rather of the explanation for passage into a group, and then further for shaping responses to those who are contained within that perimeter. This book sharpens the tongue of explanatory legitimacy theory as it has matured over the past 15 years, particularly in light of posthuman constructs in which what constitutes the acceptable, or even recognizable human, is up for grabs.

Although explanatory legitimacy was originally restricted to disability membership, it has now been expanded to interrogate humanness authenticity, particularly as challenged by the presence of embodied appearance, impairment, modifications, and oppressions. Given that humans have been searching for an empirical purpose and diagnosing those who do not demonstrate it, the role of explanation seems far more complex in determining which disability group members are admitted into humanness. Yet, looking at the something elses is not simply a frivolous mind exercise and a critique of responses to exclude bodies. Rather, this fundamental query is a necessary foundation to begin the reimagining process whereby a universe in which profound diversity, not simple bodies and backgrounds schemes, are welcomed and seamlessly embedded (DePoy and Gilson, 2011, 2014).

As we develop throughout this book, in concert with Bain et al. (2014), humanness violators are initially identified by their description, spotlighting the central role of visuality, symbol, and noticeability in creating a blueprint of desirable humanness. From conception, en utero imagery begins the portraiture of humans in compliance or in degrees of offense. This pixelated, dynamic silhouette of a prenatal ultrasound, explained as normal or not, is a potent indicator of membership and a driver of response to the violator.

The role of normal

There has been a large literature exposing the role of normalcy and its nonexample, not normal, in defining desirable humanness (Googin et al., 2018; Davis, 1995; Bickenbach et al., 2014). We visit this history in Chapter 3 in more detail, but introduce the elegant bell curve in this chapter to establish it as the cultural imaginary (Googin et al., 2018) for passage into desirable humanness. The bell curve operates through its visual representation of frequencies and averages, depicting what most people do, or what Bain et al. (2014) refers to as human prototype, or what MacCormack (2016) names majoritarian. Thus, common occurrence becomes prototypically prescriptive of the desirable, forming the basis for human norms and their unwanted opposites, not norms.

Violation

Violation of humanness, referring to a jailbreak from prototypical zones, spans the continuum from minor misdemeanor to egregious infraction. Configured as everything but normal, monstrosity points out the human as icon of what is normal, and thus the monster (MacCormack, 2016, 79) as the category of everything else. While violation may be revered, as in the example of superhuman athlete or what Bain et al. refers to as suprahumanness (2014), embodied notions of disability reside on the dark side of infraction in the monstrosity camps (Smith, 2020). Thus, disability in