From Disability Models to Disability Identities

Disability research explores how Western societies have mostly regarded disability as grotesque and a deviation from the norm (tenBroek and Matson Reference tenBroek and Matson1966, 812; Michalko Reference Michalko2002, 38–39; Davis Reference Davis and Davis2010, 4). Disability is viewed socially as a personal tragedy or misfortune that requires charitable giving, pity, and paternalism from society (Wendell Reference Wendell1996, 27). Such a social perception has found its way into policies concerning people with disabilities, and contributed to (if not caused) their marginalization (Stein and Waterston Reference Stein and Waterston2006, 869, 895–97; Schweik Reference Schweik2009, 7–9).Footnote ⁴ Disability has thus been historically perceived as inherent to the individual as well as a tragedy or misfortune that a person has to overcome, notions known as the individual model of disability (Oliver Reference Oliver1986, 6; Minow Reference Minow1990, 111; Michalko Reference Michalko2002, 6–7, 51).Footnote ⁵

As Elizabeth Emens has observed, there is a tension between how the law and its institutions, as well as society as a whole, perceive disability (an “outside view”) and the way people living with disabilities and their close ones view it (an “inside view”). While those on the outside look at disability as an “unhappy place,” the inside view simply looks at it as “a mundane feature of a no-less-happy life, rendered inconvenient or disabling largely by interactions with the surrounding environment, which legal accommodations alter in ways that sometimes provide benefits to many” (Emens Reference Emens2012, 1386; Rovner Reference Rovner2001, 250, 269–75).Footnote ⁶

Because disability has historically been seen as a purely medical-clinical phenomenon, people with disabilities have been kept apart from the rest of society by hospitalization in medical institutions under the cover of treatment, but really out of what seems to be fear, disgust, and misunderstanding (Stone Reference Stone1984, 107–17). People with disabilities have also largely been excluded from the labor market and the mainstream education system (Smith Reference Smith2003, 21). In other words, the medical profession has traditionally been considered the authority on determining abilities, conditions, and “body knowledge” (LoBianco and Sheppard-Jones Reference LoBianco and Sheppard‐Jones2007, 1; Wendell Reference Wendell and Davis2010, 349), and consequently has made basic, everyday decisions for disabled persons. The sociolegal treatment and definition of disability is known as the medical model of disability, which was dominant until the 1970s, and influenced myriad laws and policies (Drum Reference Drum, Drum, Krahn and Bersani2009, 28; Heyer Reference Heyer2015, 25–26).

Since the mid-1970s, people with disabilities and their allies have brought attention to their legal rights, reorienting social norms while challenging conventional notions about the phenomenon of disability (Shapiro Reference Shapiro1994, 49–58). They build their arguments using the social model of disability, which stands in contrast to the medical and individual models presented above (Areheart Reference Areheart2008, 188; Weber Reference Weber2009, 592–94; Heyer Reference Heyer2015, 23).

The social model focuses on society's attitudes toward and stereotypes about people with disabilities as the root of their discrimination and exclusion. This model illuminates the psychology of social constructivism, where a hierarchy of physical and mental attributes, grounded in difference, stigmatizes disabled people as inferior (Oliver Reference Oliver1990, 11). This process is often referred to as ableism, a term that embodies a rating of a person's abilities, attractiveness, and productivity based on her sensory, physical, or mental abilities, which are determined by nondisabled people (Linton Reference Linton1998, 9; Campbell Reference Campbell2008, 153; Wolbring Reference Wolbring2008, 253; Thomas Reference Thomas, Swain, French, Barnes and Thomas2014, 10). Michael Oliver has made an important distinction between impairment and disability. Impairment, he argues, represents the organic-biological aspect of the disability phenomenon, whereas disability represents the degradation caused to people with impairments by society (Oliver Reference Oliver1996, 37–38; Wendell Reference Wendell1996, 5).Footnote ⁷

Nevertheless, disability is a much more complex phenomenon and the distinction between impairment and disability is perhaps not so simple. The slogan-like nature that helped to popularize the social model has been criticized for occluding the variety of personal experiences of disabled people, and for preventing a full understanding of the complexity of disability (Shakespeare Reference Shakespeare and Davis2010, 269–93; 2012, 131, Thomas Reference Thomas, Swain, French, Barnes and Thomas2014, 12–14). Later scholars have therefore revised the social model. A contemporary concept of disability that draws on the classic social model views the term as complex and fluid rather than a dichotomous process of presence or absence, which is multidimensional, dynamic, bio-psycho-social, and interactive in nature (Zola Reference Zola1993, 18; World Health Organization 2002, 9). Disability is formulated through a complex interaction between the health condition (the pathology) and the social environment (Nagi Reference Nagi, Pope and Tarlov1991, 326).

Such thinking has inspired a new academic field, disability studies, which examines disability as a social, cultural, and political phenomenon (Linton Reference Linton2005, 518; Goodley Reference Goodley2011, 1; Kanter Reference Kanter2011, 416–19; Barnes Reference Barnes, Swain, French, Barnes and Thomas2014, 17–24), and transcends multiple disciplines, including legal studies and practice. My research is another building block in the relatively new field of disability legal studies, which seeks to apply disability studies perspectives to law while examining the role legal institutions play in the social construction of disability (Mor Reference Mor2006, 64; Heyer Reference Heyer2007, 267–68; Kanter Reference Kanter2011, 426–28).Footnote ⁸ The social model has exceeded the borders of the academic realm, penetrating into the real world to help empower people with disabilities by changing the way they think about themselves and their place in society (Michalko Reference Michalko2002, 6).

As a result, this research has important implications for and ties to disability identity. According to the model of the looking-glass self, the concept of self arises from a process of seeing ourselves as others see us. Pioneered by the sociologist Charles Horton Cooley, the looking-glass self theorizes self-identity as a reflexive understanding of a person's biography (Cooley [Reference Cooley1909] 2005, 52); that is, it focuses on an individual's understanding of how society and culture perceive one's social status, functions, family tree, and other traits (Taylor Reference Taylor1989, 35; Giddens Reference Giddens1991, 53).

According to social identity theory, because persons with disabilities are prone to encounter stigma, they must find ways to protect themselves from negative treatment and characterization (Olney and Brockelman Reference Olney and Brockelman2003, 47). The de-medicalization of disability through ideas derived from the social model has played a part in liberating large numbers of people with disabilities and helped them create an empowered disability identity and, in terms of social identity theory, to choose a collective coping strategy (Darling and Heckert Reference Darling, Heckert and Barnartt2010a, 205–06; Nario-Redmond, Noel, and Fern Reference Nario‐Redmond, Noel and Fern2013, 470). Those who embrace this model, at least in part, can see themselves as victims of prejudice and discrimination or as survivors of oppressive treatment as opposed to flawed and worthless individuals (Shakespeare Reference Shakespeare2012, 129; Malhotra and Rowe Reference Malhotra and Rowe2013, 4). They might take pride in their life experiences and their bodies and claim disability as a life-enriching experience, a part of a positive cultural heritage, or at least a salient and defining aspect of identity (Olney and Brockelman Reference Olney and Brockelman2003, 40–41; Hughes Reference Hughes, Swain, French, Barnes and Thomas2014, 56). Empirical studies have shown that those who identify closely with the disability community often engage in direct political action aimed at bringing social change and improving the conditions and lives of group members (Nario-Redmond, Noel, and Fern Reference Nario‐Redmond, Noel and Fern2013, 470).

However, some disabled people still view themselves through the more traditional medical model. According to empirical research, those people will choose an individualistic coping strategy and view persons with disabilities as weak and disempowered, and therefore try to distance themselves from that group in what have been referred to as acts of normalization (Watson Reference Watson2002, 521; Darling Reference Darling2003, 884). Such people will usually try to conceal or minimize their disability, and might even take measures to “fix” themselves (Nario-Redmond, Noel, and Fern Reference Nario‐Redmond, Noel and Fern2013, 470).

Although an individual's awareness of and relation to a social movement or progressive social concepts certainly help shape identity, that awareness is largely affected by social, cultural, and economic circumstances. Frank Munger and David Engel use the term resources to describe life circumstances that are entrenched in both the individual and the environment and contribute greatly to the creation of self-identity for people with disabilities. Such resources include “upbringing, education, wealth, and social relationships, as well as personal attributes such as imagination, character, congeniality, and perseverance” (Engel and Munger Reference Engel and Munger2003, 177, 215–20, 189, 202–03), alongside such factors as gender, race, age (Darling and Heckert Reference Darling and Heckert2010b, 131–43), proportion of life disabled, religious belief (Engel and Munger Reference Engel and Munger2003, 159–60), and sexual orientation (Olney and Brockelman Reference Olney and Brockelman2003, 42).

The idea of mapping out and categorizing types of disability identities is helpful in creating a basis for empirical research that tries to assess impacts, correlations, and effects of those categories on various policies and social realities (Darling and Heckert Reference Darling, Heckert and Barnartt2010a, 203). Because the idea of labeling and pigeonholing people can stigmatize and have other negative implications, even with good intentions, it should be done with great care, as I try to do here (Minow Reference Minow1990, 347).

In 2003, Rosalyn Benjamin Darling developed a new typology of disability identities (Darling Reference Darling2003, 884–85). In 2010, Darling and Heckert empirically tested this typology using quantitative and qualitative methods. The results generally supported this system of categorization (Darling and Heckert Reference Darling, Heckert and Barnartt2010a, 214, 216, 223).

This typology suggests that there are two primary groups of disability perceptions among the population of people with disabilities: one that embraces the social model and another that identifies with the medical-individual models.Footnote ⁹

Disability, Social Insurance, and Welfare

For hundreds of years, people with disabilities were deemed unemployable and excluded from the labor market and the rest of society (tenBroek and Matson Reference tenBroek and Matson1966, 810; Stone Reference Stone1984, 55). It is no wonder that poverty and disability are so closely connected (Smith Reference Smith2003, 29; Wing Reference Wing2005, 657; Schweik Reference Schweik2009, 16; Mor Reference Mor2011, 184). Research indicates that there is a stereotypical expectation of people with disabilities to “just sit home, out of society's sight, and collect the check” given to them as a paternalistic gesture of governmental assistance (Little Reference Little and Barnartt2010, 193). This notion of welfare mentality goes along with the sick role people with disabilities are expected to play in order to receive the help and accommodations they need (Winter Reference Winter2003, 40; Parsons Reference Parsons and Bryan2013, 294).

There is a strong connection between the presumed inability to work and the medical model. Governmental agencies rely almost exclusively on medical certifications to assess a person's ability to work. As Debora Stone puts it, “for all practical purposes, the concept of impairment stands as the proxy for disability or inability to work” (Stone Reference Stone1984, 113).

Social insurance is the government's mandatory monetary protection against risks and social hazards, not covered in the private market, associated with living in an industrial and postindustrial society in which income is derived from paid labor. It is thus a dedicated tax on workers' earnings, which employers match with their own contributions, and is collected into funds. To be deemed insured, a person must therefore work a substantial amount of time to be able to save sufficient sums of money (Weber Reference Weber2009, 578–80; Barnes and Burke Reference Barnes, Thomas and Burke2015, 52).

In contrast, a welfare program (formally known as public assistance) is a means-tested program, meaning its eligibility is measured by the applicant's income and assets, and is not connected to participation in the workforce (Weber Reference Weber2009, 584).

The social insurance program aimed at the population of people with disabilities in the United States is the Social Security Disability Insurance (SSDI), and the welfare program aimed at this group is the Supplemental Security Income (SSI). Both programs are operated under the authority of the Social Security Administration (SSA), an independent federal statutory authority (Social Security Act 1935).

These two programs are governed by the same authority and use the same standards and criteria to determine a person's disability (Weber Reference Weber2009, 584). To receive either SSDI or SSI, a person must “be unable to engage in any Substantial Gainful Activity (SGA), by a reason of any medically determinable physical or mental impairment which can be expected to result in death or which has lasted or can be expected to last for a continuous period of not less than twelve months” (Social Security Act 2000, § 423(d)(1)(A)). This definition of disability clearly divides those who have work potential (and thus are not eligible for benefits) and those who have no work potential (and are therefore eligible) (Social Security Advisory Board 2003, 3).Footnote ¹⁰

The difference between these two programs, which is inherently connected to their nature and rationales, is the populations they serve: SSDI serves former workers who cannot continue to work because of a disability that appeared during their lifetime (usually, but not always, people in their fifties or sixties) (Berkowitz and Wolff Reference Berkowitz and Wolff1986, 81),Footnote ¹¹ while SSI serves a disadvantaged and low-income group of individuals regardless of their employment history, as well as children under the age of eighteen with disabilities (Bloch Reference Bloch2003, 42).Footnote ¹²

Especially in the period before the Affordable Care Act, which seeks to guarantee health care coverage for the United States population, many disabled people were forced to turn to SSDI or SSI in order to obtain health care (Little Reference Little and Barnartt2010, 192). Thus, SSDI and SSI also served the purpose of covering some medical costs for their recipients through such complementary programs as Medicare and Medicaid (or Medi-Cal in the State of California) (Weber Reference Weber2009, 581; Huberfeld and Roberts forthcoming).

The number of people receiving SSDI has steadily increased since the 1990s: from 2.2 percent of adults aged 25 to 64 in 1985 to 4.1 percent in 2005 (Anderson, Turner, and Burkhauser Reference Anderson, Jason and Richard2013, 2; National Bureau of Economic Research n.d.). As of December 2012, 8,262,877 individuals were receiving SSI and 9,850,966 were receiving SSDI benefits (Disability Statistics and Demographics Rehabilitation and Research Training Center 2014, 76). In 2011, 1.47 million people with disabilities received some kind of governmental assistance (SSDI or SSI) in the State of California (Boursiquot and Brault Reference Boursiquot and Brault2013, 2–3).

The Disability Determination Process as a Formal Identity-Defining Procedure

The disability determination process (DDP) is a five-step procedure to determine a person's disability and thus eligibility for SSDI or SSI (Brandt et al. Reference Brandt, Houtenville, Huynh, Chan and Rasch2011, 118; Barnes and Burke 2015, 89). Although the SSA is a federal authority, this procedure is performed by state agencies, known as Disability Determination Services (DDS), which are partnerships between the states and the federal government (Barnes and Burke 2015, 64).Footnote ¹³ Perhaps even more intriguing than the claim for benefits, however, is the question of how the DDP, representing the state, validates a subject's identity in a formal way. It does so by establishing binary categories of disabled versus nondisabled (Broyer Reference Broyer2011, 51).

A wide conceptual gap exists between the SSA's approach and definition of disability and contemporary social models of disability (Barnes and Burke 2015, 77–78, 95). The SSA strongly emphasizes the link between impairment and disability and the medical-individual aspects of the disability, with little focus on a person's actual functioning; important attributes like the environment's accessibility and the person's strengths, character, and actual needs are not taken into account (Brandt et al. Reference Brandt, Houtenville, Huynh, Chan and Rasch2011, 118).Footnote ¹⁴

My research probes the relationship between how a person perceives herself (her disability identity) and how she believes the DDP procedure perceives her. This research investigates how the tools, criteria, and definitions utilized by the SSA (through the DDS agencies) in this procedure and throughout the SSA's relationship with its subjects may differ from an individual's personal assessment criteria (Brown Reference Brown1993, 391–93, 398).Footnote ¹⁵ The research therefore examines concepts of fairness and justice at both the administrative and individual levels to reveal core disjunctions. Because everyone who receives SSDI or SSI belongs to a stigmatized and marginalized group, this research asks whether this otherwise well-intended administrative procedure might potentially harm its subjects' sense of self-worth, and whether this procedure itself may not in fact distance its subjects further from mainstream activities.

Procedural Justice Concepts and Overview

The rising number of disability benefits claims (SSDI and SSI) creates pressure on the SSA to achieve a more uniform, fair, and efficient decision-making procedure (Verkuil and Lubbers Reference Verkuil and Jeffrey2003, 734). But how might one measure such concepts as justice or fairness when examining procedural arrangements for claiming substantive rights (rather than the study of substantive rights themselves)? This question underlies the field of procedural justice.

Unlike distributive justice, which deals with how people perceive the justice of outcomes, procedural justice focuses on how subjects experience the procedure through which decisions regarding substantive rights are made, rather than its outcomes (Tyler and Lind Reference Tyler, Lind, Sanders and Hamilton2000, 65; Welsh Reference Welsh2001, 817; Deutsch Reference Deutsch, Deutsch and Coleman2006, 47–48). Research done in this area has shown that laypeople “pay a great deal of attention to the way things are done [i.e., the way an authority or decision maker comes to a decision] and the nuances of their treatment by others” (Lind and Tyler Reference Lind and Tyler1988, 242). Procedural justice accordingly also emphasizes the interaction between the individual and the authority. This field of research suggests that subjects who are not repeat players (Galanter Reference Galanter1974, 124) may use their intuitions about the fairness of a procedure as a proxy for assessing its outcomes (Hensler Reference Hensler2003, 426–27). Sometimes, subjects who consider a procedure fair maintain that view even if they disagree with or are not pleased by its outcomes (Lind and Tyler Reference Lind and Tyler1988, 71).

A strong connection seemingly exists between notions about procedural justice and the perceived legitimacy of and deference given to legal and governmental institutions. Subjects who believe that they have been treated in a procedurally fair manner are more likely to think highly of the institutions they have dealt with in terms of respect, loyalty, and obedience (Tyler and Lind Reference Tyler, Lind, Sanders and Hamilton2000, 66–68).

Research on procedural justice has produced several characteristics that can serve as criteria for assessing the fairness of procedures.

1. • Having a Voice—the opportunity for a subject to recount her side of the story freely and to voice her views, opinions, and concerns is an important indicator of the perceived fairness of a procedure (Relis Reference Relis, Sarat and Ewick2002, 182–83).

2. • Consideration—the flipside of the voice criteria is the subject's notion that she has been heard. Having a voice reassures the subject that she has some way of exercising influence on the decision maker and that what she said matters (Lind, Kanfer, and Earley Reference Lind, Kanfer and Earley1990, 957; Welsh Reference Welsh2001, 823).

3. • Dignity and Ethical Treatment—interpersonal interaction between the subject and the authority is also important. Subjects assess the degree to which the decision maker, or its representatives, treated them in a dignified and polite manner (Lind et al. Reference Lind, MacCoun, Ebener, Felstiner, Hensler, Resnick and Tyler1990, 958). Dignified and respectful treatment demonstrates to subjects that authorities recognize their role as public servants who give services to entitled citizens (Welsh Reference Welsh2001, 824). The subject also expects that the authority will try to treat her in a fair and even-handed manner (Relis Reference Relis, Sarat and Ewick2002, 183–84). The idea of being treated fairly and equally can be reduced to three important components: consistency of decision making, impartiality (bias-free decision making), and corruptibility (the right to appeal the decision) (Blader and Tyler Reference Blader and Tyler2003, 748, 753). Jerry Mashaw emphasizes this point even further by saying that openness and comprehensibility in the decision-making process will lead to a better sense of self-respect for the subject, who will consequently stop viewing herself as an “object susceptible to infinite manipulation by ‘the system’” (Mashaw Reference Mashaw1984, 90–91).

4. • Control Over the Procedure and Decisions—Allan Lind and Tom Tyler stress that “virtually all of the studies of procedural fairness in dispute resolution” have shown an independent effect of process control even “in conditions where subjects received negative outcomes” (Lind and Tyler Reference Lind and Tyler1988, 97, 99). It seems that subjects appreciate the opportunity to feel as though they control, even to some extent, both the procedure and the final decision.

The Group Engagement Model of Procedural Justice

The focus of procedural justice research on interpersonal relations and the equality of treatment inspired theoretical models that help us understand how and why procedures shape cooperation in groups, organizations, and societies (Tyler and Blader Reference Tyler and Blader2003, 351–52). The group engagement model is one of the newer models. It is connected to social identity theory, and focuses on the manner in which members of minority and stigmatized groups experience governmental and state procedures.

The group engagement model predicts that willingness to cooperate with a group flows from identity information the individual receives from the group, which arises from the individual's perception of the fairness of the procedure. In other words, there is a relationship between fair process and group engagement: how people identify themselves is directly connected to how they experience procedures made by the group of which they would like to be a part (Tyler and Blader Reference Tyler and Blader2003, 358).

Powerful institutions and authorities sometimes stigmatize members of a certain group, even unintentionally. This is something that the DDP has done through its public policies concerning people with disabilities, which are governed by notions associated with medical-individual models of disability. In such situations of stigmatization, the individual might feel the need to withdraw from community life and citizenship. The individual does so in order to avoid social rejection by the formal bodies or, in more extreme cases, because she feels that she is not capable or worthy of social opportunities (Watson and Angell Reference Watson and Angell2013, 32). This same individual is also more alert and sensitive to cues from the authorities regarding her acceptance (Okimoto and Wrzesniewski Reference Okimoto and Wrzesniewski2012, 628).

Fair procedures help members of stigmatized and minority groups gain confidence in their association with the larger group (in this case, mainstream American society). This is because the two aspects of a procedure—the quality of its decision making and its interpersonal treatment—contribute to a person's assessment that it is safe for her to be part of the group/society. An unfair procedure might signal to the person that there are stigmas and biases against her, and she will decide not to cooperate with the group and distance herself from it (Watson and Angell Reference Watson and Angell2007, 689; Okimoto and Wrzesniewski Reference Okimoto and Wrzesniewski2012, 628).

In sum, fair and respectful treatment and procedures should increase feelings of inclusion and value for people with disabilities in society at large. This is especially valuable in light of the current discussion of how the DDP can be seen as a formal identity-defining procedure.

Research Questions and Hypothesis

This research unravels the relationship between a subject's self-perceived identity as a person living with disabilities, her perception of the justice and fairness of the DDP procedure, and her interaction with the DDS agencies in claiming Social Security benefits. That is, how does a person's exposure to the field of disability studies, the social model and/or the strategies for coping with stigma (individualistic or collective) relate to the way she perceives the DDP and the interaction with the SSA in the process of claiming benefits? Further, drawing on the group engagement model of procedural justice, this research also analyzes how an individual's perception of the fairness of the DDP procedure informs her perception of herself as a welcomed and included member of society.

My hypothesis is that disabled people who embrace the social model (as opposed to their counterparts who use only individualistic coping strategies and identify with the medical-individual models) are likely to be critical of the DDP and their interaction with the SSA (and specifically the DDS agencies) in claiming benefits. They are more prone to see the agency's misalignment with their own perceptions of themselves as disabled persons and with what they perceive to be contemporary concepts of disability. As a result, they are likely to view the procedure as another tool that authority figures and societal leaders use to marginalize and mistreat people with disabilities.

Data Collection and Methodological Limitations

This research comprised fourteen extensive interviews with people living with a wide array of disabilities in California's Bay Area, conducted between November 2013 and February 2014. Since this research is exploratory, and because of time and budgetary constraints, I was unable to interview a large number of people or use a focus group or any other kind of sampling technique when choosing my interviewees. My volunteer sample therefore consists of people who have self-selected to participate in this research.

It is important to note that this research design resulted in a somewhat biased research population. The design mostly allowed access to interviewees who are active in the disability community and have a specific kind of disability identity that goes hand-in-hand with the collective coping strategy and the acceptance of the social model. Keeping this concern in mind during data collection, I tried to reach as diverse a population as possible within my constraints. Since disability studies scholars were criticized for not taking account of aspects of oppression that are derived from other intersecting identities such as gender, race, class, and sexual orientation (Asch Reference Asch2001, 418; Bell Reference Bell and Davis2010, 377; Little Reference Little and Barnartt2010, 187; Ribet Reference Ribet2010, 219), I kept those identities and the idea of intersectionality in mind while trying to recruit participants for the research and assess its subjects' disability identities. I managed to interview people representing different demographics, backgrounds, socioeconomic statuses, and legal consciousness so as to offer a broad description of the phenomena (see the Appendix for the summary table describing the research population).

Another limitation of the research methodology has to do with the effect of memory on procedural perceptions. The amount of time elapsed since the interviewees have gone through the DDP will differ and could be large. The interviewees will also have gone through the DDP during differing periods of their lives. To deal with this issue, I took into consideration the way memory connects to the construction of identity, narrative, and perceptions (Scheman Reference Scheman and Tietjens Meyers1997, 125–26).

Analysis of the Identities in the Medical-Individual Models Group

Analysis of the Identities in the Social Model Group

The Effect of the Visibility of the Disability on the Procedure

One issue that came to influence the findings is the visibility of disability of the DDP's subject. When assessing a person's eligibility for Social Security benefits, the DDS checks whether her medical condition fits within one or more of the impairments found on the official listings, and whether it is “considered severe enough to prevent an individual from doing any gainful activity” (Social Security Administration 2014). People with more prominent/visible disabilities who can easily prove their impairments therefore have an easier time obtaining benefits than others whose disability either is less apparent or does not correspond with the official definitions.

The disability rights movement is a unique entity among other civil rights movements since it is incredibly diverse in nature, declaring a “cross-disability” approach (Scotch Reference Scotch1989, 385; Shapiro Reference Shapiro1994, 5, 24–25; Longmore Reference Longmore2003, 111; Bagenstos Reference Bagenstos2009, 3). Many disabilities are less apparent, ranging from chronic diseases to mental disabilities, and can be harder to prove. Moreover, nondisabled members of society sometimes doubt their existence or their effects on many aspects of life, which can lead to further difficulties in proving and obtaining disability benefits.

Some of the interviewees have moved from having an invisible or less apparent disability to a more visible or obvious one, and provided valuable insight. Sheila, for example, was living with a few invisible disabilitiesFootnote ¹⁷ before becoming an amputee about a year ago. Sheila says that before she became an amputee and began using a wheelchair regularly, she had a hard time proving to other people her condition, especially because she is such a positive person who “presents well.” Sheila said even her husband did not believe that she had a disability and that she was in pain and that her daughters “still don't.”

Sheila feels she does not receive much support from her daughters and this has been hard on her. She and her husband suggested that their daughters are in denial because they are afraid they might become disabled themselves since they carry the same genes. The notion that many people, at some point in their lives, will become disabled has been addressed in the disability studies literature in the form of the term temporarily able bodied. This notion is sometimes used in order to make a broader crowd interested in disability-related issues or to promote related policies (Goodley Reference Goodley2011, 1).

Sheila was categorized under the medical-individual models group and admitted to having hard time accepting the fact that she has a disability. As a result, it took her years to obtain a disability parking permit before becoming an amputee and having a visible disability. When she finally got the permit, she had to face the experience of proving her disability to others. Sheila said: “The thing that I feared most actually happened. First day that I used it [the permit] I parked … I was going shopping and I parked and it was raining and this lady comes up to me with an umbrella and starts hitting me,” because that woman thought Sheila was not really disabled and was abusing the system by using a disabled parking permit she did not deserve. “And I just looked at her and said: ‘You know, I'm not a really vengeful person but I wish you would have one hour of the pain that I have to live with before you make those kind of assumptions.’”

Hilary, who has lost most of her ability and sense in her left side (hemiparaplegia) as a result of a brain tumor and who now uses a Segway as a walking aid most of the time, told a similar story. Once, before using a Segway, she and her mother left their car in a disabled parking spot when a stranger said to her, “Why are you even using that, you don't need that.” Hillary said that her mother asked her to pull up her pants and show that man her brace so he would believe that she was really disabled. Those experiences fit with the description of “policing of disabled parking placards” that was addressed in the literature (Moorhead Reference Moorhead2003, 23; Samuels Reference Samuels2014, 132–33).Footnote ¹⁸ Such stories demonstrate the need to prove a less apparent disability over and over again when exercising a right designated to people with disabilities. It shows how disabled people sometimes need to expose themselves before others and prove the private experiences and pain that go along with their impairments.

This idea is translated in a very clear way into the DDP procedure. Rebecca, for example, who used to be diabetic and had a kidney dysfunction before losing her vision, had twice been rejected for disability benefits. Rebecca, who was not aware of her right to appeal, luckily met someone from within the system “who helped push through” her application and get her on benefits.

It is therefore not coincidental that only two other interviewees, both of whom had been rejected by the DDS and had gone through an appeal before an administrative law judge, had less apparent disabilities: Jenny, who has severe adult onset asthma, and Dayna, who gradually lost her vision in old age and did not use a cane or any aid for years. Both lacked “clear cut” cases and had to prove that they were disabled before a judge.

Having a Voice

All the interviewees (regardless of their identity group) felt they lacked the opportunity to voice their opinions and tell their stories during the DDP. Those with visible disabilities mentioned that they did not have significant encounters with a DDS representative. Because they could easily prove their disability by submitting their medical records, the opportunity to tell their stories never materialized.

Nevertheless, attitudes toward the idea of voice differed between the members of the two large identity groups: members of the medical-individual models group seemingly cared less about this aspect and did not want to share their stories, while people in the social model group saw value in it. From the medical-individual models group, for instance, Ben said, “To tell you the truth, I am a little bit paranoid. So as long as I get my disability [benefits], I kind of would rather be more quiet about it and just leave them alone and they leave me alone.” Dayna agreed with Ben and said she does not feel having a voice is important to her. She prefers the process to be “as objective as possible,” so there is no need to go into so many details about a person's daily life.

On the other hand, members of the social model group did appreciate having a voice. For example, both Hillary and Tami compared the DDP to another procedure done by the California Department of Rehabilitation, a state agency that offers professional and financial support to college students with disabilities and helps them find their way in the labor market. They said that the DDP process is far less personal, and does not take into account the needs of the claimant. They longed for a representative who understood them and to whom they could raise their concerns about their current needs and expectations. Rebecca addressed this issue more directly by saying she lacked the opportunity to voice her opinion because of the manner in which the representatives presented themselves: “I didn't feel like I could [voice my opinions] because some of them project themselves [to be] like so big and bad and mean and you better not say anything or do anything. I was [laughs] ‘yes, whatever you say.’ No, I didn't feel comfortable because then if you start to speak up for yourself, then they think you're getting an attitude and they start [pause] they really start coming at you.” Similar descriptions of reticence of welfare claimants because of the fear of alienating or making representatives angry were found in previous research (Soss Reference Soss2000, 136–37).

This view of the DDS representatives and the nature of interaction with them could be derived from the intersectional identities Rebecca possesses being a low-income African American woman (Crenshaw Reference Crenshaw1991, 1251–52, 1262; Ribet Reference Ribet2010, 222). Rebecca, who needed the SSI money so badly, did not want to do anything that would somehow cause her to be rejected and so gave up on the idea of conveying her story.

Although Rebecca argues that she herself did not talk back to the DDS representatives, one could argue that not all benefits claimants take the same approach. Some of them might project disrespect for the DDS representatives, causing the latter to treat them in the same way, evoking feelings of unethical treatment. None of the interviewees in this research observed this situation in their cases, but this “it takes two to tango” mode might suggest a source for the negative feelings toward the procedure. This idea of increased frustration, sensitivity, or even oppositional approaches taken by members of politicized identity groups, such as the social model group, seems to derive from the social model's origins and the view that it began as a protest against historical notions of exclusion. As pointed out by Wendy Brown, those inherent frustrations can stand in the way of achieving full integration into society in the future (Brown Reference Brown1993, 406).

Rebecca's answer naturally leads to the next aspect of procedural justice examined: the ethical and respectful treatment by DDS representatives.

Dignity, Ethical Treatment, and Impartiality

Another difference was found in the way interviewees from the two groups perceived the treatment they received from DDS representatives. Generally speaking, the interviewees in the social model group were more critical of the attitudes and “quality of treatment,” unlike the interviewees in the medical-individual models group, who all found the representatives to be respectful and professional.

A neutral approach to this aspect of the DDP came across clearly in my interview with Ally, who was accompanied by her mother. Both found the treatment they received from the DDS representative to be very impersonal (“cut and dry”), but respectful and professional (“they are mostly friendly and definitely not nasty”). They did not meet anyone who was mean or unfriendly, and actually recalled meeting someone who was very nice.

On the other hand, people in the social model category encountered at least some disrespect from DDS representatives. They argued that they lacked a “customer service attitude” and were mean and intimidating. However, it seems that their view of their experience was not only affected by their identity perception, but also by the nature of the benefits they received. All these interviewees had received SSI at least once in their lives. Lisa, who received SSI for many years but now receives SSDI, expressed the difference in treatment between the two programs:

This difference between the two Social Security programs is that SSDI is social security and SSI is a welfare system, which in liberal welfare regimes like the United States is aimed at those who are most disadvantaged, such as the unemployed and the disabled (Arikan and Ben-Num Bloom Reference Arikan and Ben‐Num Bloom2015, 432).

According to the interviewees, negative social attitudes toward welfare had found their way into the policy itself and its implementation, thereby affecting the treatment of DDP subjects. The representatives did not appear impartial, as one might expect from state officials, but possessed biases against and stigmatized those who applied for benefits. Similar differences between SSDI and welfare claimants regarding views of dignified and ethical treatment by SSA representatives were found in previous research (Soss Reference Soss2000, 93, 110, 120–22, 151). Joe Soss hypothesized that those differences in views were related to the different demographics and personal backgrounds of the members of the two groups of claimants, although such a connection could not be substantiated by his evidence (Soss Reference Soss2000, 116–19). This awareness of bias among DDS representatives was observed only by interviewees in the social model group, and not the medical-individual models group. This is not surprising because people in the first group are often aware of the ways in which disability is socially constructed, and were thus more attuned to stigma.

The Idea of Incorporating People with Disabilities in the SSA

The interviewees were asked whether they think it is important for people with disabilities to work within the SSA (including the DDS agencies) and help to assess claimants for benefits. The interviewees' answers were distributed in a clear way: while all of the members of the social model group said that it is important for disabled people to be part of the SSA system, the people in the medical-individual models group said they do not see any benefit to this idea.

This clear separation was seemingly connected to the fact that the people in the social model group believe in a common social identity built on the experience of living with disabilities. Unlike the people in the medical-individual models group, they see disability as an essential and positive influence on a person's character. Hence they believe that those who experience firsthand the complexity of living with disabilities (an “inside view”) could likely positively change the system from within. This belief also resonates with the theme of “nothing about us without us,” which is prominent in disability studies, and calls for the inclusion of disabled people in the design and execution of policies that affect them (Charlton Reference Charlton2000, 16–17; Heyer Reference Heyer2015, 24, 37). Such successful implementations of voices of people with disabilities into social policies and specifically into the Social Security systems were made recently in Australia and Canada (Parliamentary Committee on Palliative and Compassionate Care 2015, 20; Thrill Reference Thrill2015, 20–25). When translating this idea into policy, it is important for the SSA and the DDS to hire a diverse group of people with disabilities who represent the different views on disability.

Accessibility of the Procedure and the Role of the Community

When asked how the DDS communicated the procedure to them, whether they understood the process or felt they had any control, most of the interviewees—regardless of their identity group—found it difficult to understand how the system worked. Nevertheless, there was one clear difference between the two groups. Interviewees from the social model group received at least some support from the disability community through the process.

Hillary, from the social model group, said: “It's like learning to play a game. There's a steep learning curve to dealing with SSI. … You either going to get your benefits or lose your benefits, and since nobody is explaining things to you, you have to learn how to play the game: you have to know people who have been on the system and know a lot about it. I was just fortunate to be involved in the disability community and have the resources, but the everyday average person [may not have that].” Lisa and Jenny, who are long-time activists, also spoke about how the disability community in the Bay Area has helped its members go through the procedure. Embracing a common social identity and belonging to a community has seemingly allowed people to understand the procedure better—or at least go through it more easily—and has thus also affected their experiences with the DDP (Soss Reference Soss2000, 66, 77–84; Soss and Keiser Reference Soss and Keiser2006, 138, 144).

“Your Worst Day” Approach

During the interviews, an important suspicion arose repeatedly among most of the interviewees from the social model group: that the SSA intentionally makes the DDP procedure difficult. Steve, for example, said that the SSA writes letters to claimants “that are mean-spirited” because they know that “95 percent of the people are not going to fight it.” Jenny went even further, speculating that the SSA has a quota of people they can approve to receive benefits. This notion, which rarely if ever came up with members of the medical-individual models group, exposes a deep mistrust between members of the social model group and the SSA.

Another recurring pattern, which can be seen as the response to or the way the claimants dealt with what they perceive as intentional disqualification, surfaced among members of the social model group. They argued that the DDS asks claimants counterintuitive questions that are designed to create grounds for disqualification. Those questions target everyday tasks done by the claimants and are used to assess the nature of their disability.

Such questions are counterintuitive because of the entrenched need for a person with a disability to prove her worth and “put on her best face.” The catch in the specific context of the DDP is that in order for a person to be eligible for benefits, she actually needs to prove the exact opposite—that she is unable, weak, and in need of major assistance. Because getting into this mind-set is so hard to do, the approach recommended by interviewees is to answer the questions presented in the DDP as if it were the claimant's worst day. Lisa makes this point very clearly, stating: “There is this saying that advocates for Social Security use … that you have to think about your worst day. You have to talk to them about how hard it is to live with a disability, how much it limits you, how much trouble it is, how bad you feel, how often you're sick. You have to talk that way. Because you have to impress [pause] you have to present an image of being pathetic and helpless.” Lisa points out how, in order to get benefits, a person must channel the “outside view of disability as a sad place,” or “play the sick role”—two notions routinely presented in research into disability (Winter Reference Winter2003, 40; Emens Reference Emens2012, 1389–93).

Lisa went on to explain the paradox presented to claimants:

When I asked Lisa for a specific example, she said that, in a review not long ago, she was asked about her daily activities: “‘What do you do with your spare time?’ … So I write in the box … ‘I read,’ I don't say I go out to the movies, I go shopping … I don't say that. … So I would respond to all those questions, ‘Yes, I had a lot of laundry. I spend my time doing laundry because I'm incontinent.’… I had to prove them that I was disabled enough, pathetic enough … yeah, that's how the system is set up.”

Tami believes that if people with disabilities were part of the assessment team within the SSA or DDS, they would know how to ask those questions correctly, possibly because they would see disability from an inside perspective and understand its complexity: “[The questions] would be more realistic instead of decisions that are based on formulas. Because if I say, ‘Yeah I can take the trash down the street,’ you know, then they say, ‘Well you can get up and walk.’ Well what if that person says, ‘Every step I take is painful’ then there is reality.” Life with a disability is complex for a lot of reasons, but the need for interviewees to downplay their abilities and emphasize their weaknesses by using the worst-day approach is a problematic aspect of the DDP procedure.

As Michael Asimow points out, the DDP procedure “is much closer to the inquisitorial end of the scale than the adversarial end” (Asimow Reference Asimow, Jacobes and Baglay2013, 99). The main characteristic of an inquisitorial system is the never-ending quest for the truth. In inquisitorial systems, only a few procedural rules are applied in order to fulfill the goal of allowing the truth to surface naturally (Jolowicz Reference Jolowicz2003, 283–84). The current situation, where claimants are seemingly required to present an exaggerated version of their life experiences and abilities in order to be deemed eligible, conflicts with the search for the truth—the underlying purpose behind this inquisitorial procedure.

The DDP itself is designed in a way that requires claimants to construct their disabilities socially using the outside view (Broyer Reference Broyer2011, 53).Footnote ¹⁹ In his 1991 article about widows' disability benefits, Anthony Alfieri argues that “[t]he practice of silencing permeates the disability determination process, enforcing the ideals of benevolence and discipline and excluding the alternative ideals of autonomy and community” (Alfieri Reference Alfieri1991, 797–98). In Tami's words:

Discouraging Full Participation in the Labor Market

Throughout the interviews, the question of how much a person can actually work and still be eligible for benefits came up often. Lisa, from the social model group and who used to work for nonprofit organizations, said that she always ensured that she did not make too much at her job so that she could still be eligible for SSI. If she had allowed herself to earn even a little over the limit and have her benefits cut, she would not have enough money to support herself—it was a catch-22. Members of both groups were also highly motivated to work and contribute to society as full members. Jenny and Ben (who belong to different identity groups) both said they wanted to feel the sense of pride that comes with being considered productive “because of ego.”

A recurring theme among interviewees from the social model group (which was not present among the medical-individual models group) was the critical perception that the DDP discourages disabled people from participating fully in the job market, and that it pushes them into the margins of society (Stone Reference Stone1984, 20). According to Trevor:

Therefore, Trevor is not surprised that the DDS representatives never asked him about his longtime career goals, nor did they offer him help in achieving them: “So if they would have asked you [what is your career goal] and I would say: ‘My goal is to be a professor,’ then your goal is to work, which means your goal is to have no benefits. What I'm saying is that it's a perverted system.”

Nicole made the same point, though more diplomatically than Trevor. She said she is grateful for having the system in the first place and that it plays an important role in her income. However, she said, “I find that the way that it's set up though … one of the things that you get out of SSDI is you get health benefits through MedicareFootnote ²⁰ and where it's ‘touchy’ is that if I produce income over a certain amount a month then all of that goes away. So there is a certain negative aspect to being employed fully.”

The system puts benefits claimants in a quandary: on the one hand, they would love to work and contribute to society, but on the other, they feel that without the benefits and the medical insurance, it would be hard to support themselves and cover the expenses that go along with living with disabilities.Footnote ²¹ This situation came across in interviews with members from both identity groups; however, members of the social model group blamed the SSA for creating this situation in the first place. In other words, and as we saw in the last section, the interviewees who embrace the social model were more critical about the procedure and the intention of the SSA toward them.

Tami had an idea of how to resolve this dilemma, and observed that society could actually benefit from people with disabilities while still allowing them to receive their benefits: “What would be nice is if [pause] cause we are a work force that has not been tapped … it would be wonderful if we can be credited to the volunteer work that we do. [To have] some sort of exchange within the community. For example, if I volunteer at a school district in an afterschool program for … five hours a week, it would … [be] nice if I could have a choice of using those volunteer hours and turn them into an income … any kind of income.” Although preliminary, this idea could potentially serve as a basis for policy change around the benefit system. The DDS agencies could collaborate with municipalities or other local authorities, perhaps even independent living centers, to establish a program that would offer some extra monetary compensation to benefits claimants who do work in the community based on its needs as well as the strengths of the claimants.

The benefits of this type of program are threefold: first, it would allow better integration of people with disabilities into society by fostering stronger relationships with their communities as well as boosting their sense of self-worth; second, it would help benefits claimants live more independently and would lessen their financial burdens; third, this program would be tapped to the actual needs of communities and would benefit those as well. This suggested program also fits well with the notion of interdependence, that is, embracing the idea of mutual dependency in the human experience and stressing the need for communal support for disabled and nondisabled persons alike, which is prominent in disability studies scholarship (Condeluci Reference Condeluci1995, 90).

Trying to Fight Stigma

Another issue that was discussed by interviewees from both identity groups was the social stigma associated with claiming disability benefits—with not working and collecting checks. The findings from the interviews validate existing notions in the literature about stigma (Soss Reference Soss2000, 38, 48, 57–59; Little Reference Little and Barnartt2010, 193). Ben, from the medical-individual model group, said, “I think they [the SSA] should take into consideration that most people apply to disability [benefits] because they really don't feel like they have a choice. Things weren't working well on my job and I just couldn't stand to do it anymore. It wasn't something that I said, ‘Oh wow, I'm going to get disability [benefits] this is so cool.’” Steve told a story about how he met a stranger on his way to work who, after noticing Steve was blind, said: “‘You don't work, right?’ [laughs] and he goes, ‘You just get a check each month,’ I said, ‘Excuse me?’ I said I work, I told him what I do. I said, ‘What kind of job do you do?’ he said, ‘I'm a lawyer,’ I educated him all the way [downtown on the train].”

Interestingly, though not surprisingly, only people from the social model group felt that the DDP procedure actually perpetuates that social stigma. According to Jenny, “I think it's [the SSA] the place where I most rub up personally with these kinds of attitudes because I don't put myself in a position where I have to be around unpleasant people. But when I go to these hearings or when they call me in for whatever reviews, I have to rub up against this kind of thing [stigmatizing attitudes] and it's painful.”

Implications Regarding the Place in Society and Relationship with the SSA

The conclusion drawn from the interviews with members of the social model group is that the stigma did find its way into the DDP and that they felt it during the procedure. However, interviewees from the medical-individual group felt differently about the DDP. Although he acknowledged its existence, Ben did not connect social stigma and the DDP, saying, “I was just happy to get it and I kind of wish that it would be more money, but it didn't affect my [view of my place in society]. I didn't think much into ‘oh this means that … the United States doesn't think I can do anything’ no, no, I didn't feel that.”

Dayna also felt that the DDP has no effect on the way she perceives her place in society: “I'm not sure it really changed my belief about where I fit in the scheme of society or within the country [pause]. I don't think I got something that I didn't deserve ‘cause I worked hard [to save for SSDI]. It was one of the things the judge said [in the appeal Dayna had to go through], it was clear to her that I wasn't trying to just avoid working.” When asked if the DDP made her think about the way people with disabilities are treated in American society, she said, “I don't know. I never thought of it in a larger sense. I don't see myself as part of a community of disabled people, it never even occurred to me.”

Dayna's answer also speaks directly to the hypothesis of this research. Dayna had undertaken a two-and-a-half-year-long procedure for receiving SSDI because she was not considered disabled or blind enough. She is not, however, as critical as others who embraced the social model, even though, for the most part, they have been through a much less cumbersome and much less difficult procedure for receiving benefits. This demonstrates the extent to which an identity perception that accompanies a more critical view of how society disables others can influence one's view of procedures.

Some of the interviewees from the social model group articulated very hard feelings regarding the DDP. Trevor was especially critical and direct about the emotions the DDP evoked in him. When asked how the DDP made him feel about his place in American society, Trevor said he felt like a “non-citizen. I felt like I was unvalued, I mean there was no expectation that I would contribute to society. … In some ways it felt like a right without a responsibility. In some way it felt like no rights no responsibility—‘just take this and shut up,’ you know what I mean? Sometimes it felt like [long pause] you're never going to be part of American society so [the] American society is so generous that they'll allow you to sort of exist in the margins. And in a way it was like ‘we'll help you but only just enough.’” Trevor therefore directly connected the idea of citizenship, which we might consider the ultimate expression of inclusion in a certain society, with the feelings derived from the DDP. This connection aligns well with the notions underlying the group engagement model.

Rebecca shared some of Trevor's feelings. She felt that society treats people with disabilities who claim benefits

The conclusion derived from the findings presented in this section, and summarized by Rebecca and Trevor, is that the interviewees who belong to the social model group absorb a subtle message about the social and institutional perception of people with disabilities and their place in society from the DDP and the Social Security disability benefit system. They believe that society gives them some assistance in the form of benefits, which is appreciated but insufficient to support themselves due the high cost of living with disabilities that has been set by society. This valued assistance, however, comes at the high price of marginalization and stigmatization. They feel that the system's current design prohibits them from fully participating in society by engaging substantively in the labor market because that would automatically disqualify them from receiving the benefits they desperately need. They see themselves as being blamed for taking advantage of the system when what they really want, at the end of the day, is to be integrated within the labor market (and therefore society) and to live a dignified life.

From the subjects' point of view, a system that was designed for people with disabilities, but based on an outside view of disability, resulted in a disparate policy that actually works against them. These kinds of policies and practices are seemingly neutral, but in fact have a disproportionately negative effect on certain groups (Stein and Waterston Reference Stein and Waterston2006, 861, 911). Such disparate polices emerge from deeply embedded stigmatizing notions and norms in society about persons with disabilities that are derived from the outside view. Those stigmatizing notions and norms might unintentionally impact policies that were developed with little attention to, or understanding of, the nature of a group or the potential effects of such policies on it (Stein and Waterston Reference Stein and Waterston2006, 868–69). A possible solution to this disconnect might be involving people with disabilities (and their allies), who have first-hand knowledge and an inside view of disability, in the decision-making processes around policies that affect them (Charlton Reference Charlton2000, 16).