The United Nations exclaims "all human beings have the right to be treated with dignity and respect" (Annan, 2005, p. 34). Yet, disabled people have long been denied respect in the United States and have been subjected to disability oppression and ableism. For these reasons, the aim of this study was to explore the relationship between respect and disability, particularly respect's impact on the quality of life of disabled people. We had two research questions: (1.) what factors predict disabled people being respected? and, (2.) how does being respected impact the quality of life of disabled people? To explore these questions, we used secondary Personal Outcome Measures® data from approximately 1,500 disabled people; we analyzed this data to examine relationships between disabled people's interpretations of feeling and being respected, and their quality of life. Our findings revealed being respected had a significant impact on every area of ones' quality of life. Problematically, this also included areas which should be considered non-negotiable fundamental human and civil rights, that should not depend on if, and how, people respect disabled people. While the attitudes underlying the disrespect of disabled people are harmful and problematic, human and civil rights should be inalienable – ones' access to exercise their rights, to safety, to health, and to many other domains should not depend on others' attitudes about, and treatment toward, you.
The concept of respect "indicates that we believe someone is a valued person […] Respect is how we show our regard for each other. […] Respectful treatment and interactions enhance [a] person's self-esteem and result in positive perceptions by others" (The Council on Quality and Leadership, 2017b, p. 35). Contemporary moral philosophy professor Darwall (1977) explains:
To say that persons as such are entitled to respect is to say that they are entitled to have other persons take seriously and weigh appropriately the fact that they are persons […] Such respect is recognition respect; but what it requires as appropriate is not a matter of general agreement, for this is just the question of what our moral obligations or duties to other persons consist of. The crucial point is that to conceive of all persons as entitled to respect is to have some conception of what sort of consideration the fact of being a person requires. (p. 38)
Elements of respectful practice include: recognizing a person's personhood; supporting the person to control their life; recognizing complexity regarding choice, judgements, wellbeing, and dignity; and, sensitivity as reflected through interactions and language (Bigby, Frawley, & Phillips, 2014). Dis/respect is intertwined with attitudes towards certain people or about certain groups. Groups are commonly socially devalued and by extension treated with disrespect when their difference is considered deviant as a result of social norms, roles, and expectations (Wolfensberger & Tullman, 1982). As such, respect, and attitudes and stereotypes, are often intertwined.
Relations with disabled people have long been influenced by discriminatory attitudes and ableism (Abberley, 1987; Barnes, 1997; Baynton, 2001; Linton, 1998; Phillips, 1990; Schweik, 2009; Shakespeare, 1994, 1996a; Young, 2014; Zola, 1985). In fact, disability scholar and sociologist Shakespeare (1996b) cites the "critical role" prejudice and stereotypes play "in disabling social relations" (p. 192). Common conceptualizations of disability focus on what disabled people cannot do and places in society they cannot participate (Adler, Wright, & Ulicny, 1991; Harris & Harris, 1977; Wright, 1960, 1967, 1978, 1980, 1983). Doing so ignores the richness of disabled peoples' lives; "the prevalent emphasis on disabled people's functional limitations and the pervasive features of an unaccommodating environment [also] disguise widespread feelings of bias or prejudice" (Hahn, 1988, p. 41).
Compulsory able-bodied/mindedness – the assumption and enforcement of able-bodied/mindedness and the marking of those outside this binary as deviant (Kafer, 2013) – not only results in negative attitudes, it also reduces the opportunities disabled people have. In terms of civil rights, those who are portrayed as incompetent and dependent, such as people with disabilities, are typically given 'protections' and exclusions, rather than civil rights, in order to protect the individual and society (Carey, 2003). As such, perceived incompetence, and the resulting paternalism, have limited the opportunities of disabled people throughout history (Harris & Fiske, 2007; Hastorf, Northcraft, & Picciotto, 1979; Keller & Galgay, 2010). For example, disabled people were historically, and often still are, segregated and institutionalized because of the individualization and pathologizing of disability (Aschbrenner et al., 2011; Braddock et al., 2015; Geller, 2006; Trent, 1994). Disabled people have also long been denied the opportunity to take risks as nondisabled people do based on exaggerated disadvantages and perceived incompetence (Hudson, 2003; Perske, 1972; Susman, 1994).
According to the United Nations, "while freedom from want and fear are essential they are not enough. All human beings have the right to be treated with dignity and respect" (Annan, 2005, p. 34). Yet, disabled people have long been denied respect in the United States and have been subjected to disability oppression and ableism. For these reasons, the aim of this study was to explore the relationship between respect and disability, particularly its impact on the quality of life of disabled people. Quality of life is based on "common human experiences and unique, individual life experiences" (Schalock et al., 2002, p. 462) while also giving a "sense of reference and guidance from the individual's perspective, focusing on the person and the individual's environment" (Brown, Schalock, & Brown, 2009, p. 2). While originally disability quality of life measures were used in clinical contexts to examine the "burden" of disabilities, the conceptualization of these measures has since broadened to be more holistic and multidimensional, containing a wide range of domains, such as: emotional well-being; interpersonal relations; material well-being; personal development; physical well-being; self-determination; social inclusion; empowerment; and, rights (Buntinx & Schalock, 2010; Cieza & Stucki, 2005, p. 1226; Cummins, 1991; Cummins et al., 1997; Nota, Soresi, & Perry, 2006; Schalock, 2004; Schalock et al., 2002; Schalock et al., 2010). While a small number of studies have examined the relationships between self-respect on quality of life among different groups (e.g., Lee, Um, & Kim, 2007; Lee, Kim, & Um, 2007; Udo, Takano, & Numata, 2016; Zaki, 2007), to our knowledge no studies have examined how being respected impacts ones' quality of life for any social minority group.
Our study had the following research questions: (1.) what factors predict disabled people being respected? and, (2.) how does being respected impact the quality of life of disabled people? In order to address these questions, we analyzed secondary Personal Outcome Measures® data from approximately 1,500 disabled people in order to examine relationships between disabled people's interpretations of feeling and being respected, and their quality of life.
The secondary survey data utilized in this survey were transferred to the researchers with no identifiers; as such, the author's institutional research board (IRB) determined it was exempt from full review. Participants for the dataset were originally recruited over approximately two years (January 2015 – December 2016) through organizations in the United States that provide services to disabled people, including: service coordination; case management; family and individual supports; behavioral health care; employment and other work services; residential services; non-traditional supports (micro-boards and co-ops); human services systems; and state and local governments. 1,443 disabled people volunteered to participate (Table 1). While age, and gender were relatively evenly distributed across demographic categories, the majority of participants were White (73.0%), used verbal/spoken language as their primary communication method (82.3%), and lived in provider owned or operated homes (50.0%).
Three variables were used as a proxy for severity of impairment so that it could be controlled: daily support needs; complex medical support needs; and, comprehensive behavioral support needs. Daily support needs was defined as the average number of hours the person needed support and/or received support services per day, presumably those with the most support – around the clock (24/7) – have more severe impairments than those with less support needs. Complex medical support needs were defined as those people who needed skilled nursing care twelve or more hours per day. Comprehensive behavioral support needs was defined as those people that required twenty-four hour supervision particularly due to risk of dangerous behavior, such as harm to themselves or others. The majority of participants (60.0%) had around the clock (24/7) support; however, fewer participants had complex medical (12.1%) or comprehensive behavioral support needs (19.8%).
|Age range||18 to 24||94||6.4%|
|25 to 34||283||19.3%|
|35 to 44||242||16.5%|
|45 to 54||293||20.0%|
|55 to 64||257||17.6%|
|65 to 74||122||8.3%|
|Seizure disorder/neurological impairments||297||20.3%|
|Other mental illness/psychiatric impairment||156||10.7%|
|Hearing loss - severe or profound||68||4.6%|
|Limited or no vision - legally blind||45||3.1%|
|Native American or Alaska Native||52||3.6%|
|Other (Asian, Native Hawaiian, Pacific Islander, etc.)||21||1.5%|
|Primary method of communication||Verbal/spoken language||1188||82.3%|
|Residence type||Own home/apartment||309||21.4%|
|Host family/family foster care||25||1.7%|
|Provider operated house or apartment||722||50.0%|
|State operated HCBS group home||43||3.0%|
|State operated ICFDD||25||1.7%|
|Daily Support||On call - support as needed||32||2.2%|
|0 to 3 hours/day||70||4.9%|
|3 to 6 hours/day||100||6.9%|
|6 to 12 hours/day||164||11.4%|
|12 to 23 hours/day||82||5.7%|
|24/7 - around the clock||866||60.0%|
|Complex medical support needs||174||12.1%|
|Comprehensive behavioral support needs||286||19.8%|
Note. Participants could fall into more than one disability or race/ethnicity category.
The instrument used in this study was the Personal Outcome Measures® (The Council on Quality and Leadership, 2017b), developed by the international non-profit disability organization the Council on Quality and Leadership (CQL). The Personal Outcome Measures® is designed to determine disabled people's quality of life, including self-determination, choice, self-advocacy, and supports, in a person-centered manner. The Personal Outcome Measures® includes 21 indicators divided into five factors: human security; community; relationships; choices; and, goals. Human security includes the following indicators: people are safe; people are free from abuse and neglect; people have the best possible health; people experience continuity and security; people exercise rights; people are treated fairly; and, people are respected. Community includes the following indicators: people use their environments; people live in integrated environments; people interact with other members of the community; and, people participate in the life of the community. Relationships includes the following indicators: people are connected to natural support networks; people have friends; people have intimate relationships; people decide when to share personal information; and, people perform different social roles. Choices includes the following indicators: people choose where and with whom to live; people choose where to work; and, people choose services. Goals includes the following indicators: people choose personal goals; and, people realize personal goals.
For every participant, the Personal Outcome Measures® administration occurs in three stages. In the first stage, a trained Personal Outcome Measures® interviewer has in-depth conversations with the participant about each of the indicators. For these conversations, the interviewer follows specific open-ended prompts to guide the conservation. During the second stage of the Personal Outcome Measures® interview, the interviewer speaks with someone who knows the participant best and knows about their organizational supports, such as a case manager or direct support professional, and asks them questions about individualized supports. During the final stage, the interviewer completes the indicator questions about personal outcomes and individualized organizational supports based on the information gathered in the previous two stages. As the measure is person-centered, if there are any discrepancies across stages, the disabled person's answers are the ones used.
The Personal Outcome Measures® was developed over 25 years ago based on findings from focus groups with disabled people, their family members, and other key stakeholders about what really mattered in their lives. The Personal Outcome Measures® has been continuously refined over the past two and a half decades through pilot testing, 25 years of administration, commission of research and content experts, a Delphi survey, and feedback from advisory groups (The Council on Quality and Leadership, 2017b). The Personal Outcome Measures® has construct validity and reliability (Friedman, 2017; The Council on Quality and Leadership, 2017a).
The main variables of this study were "people are respected - outcomes present" and "people are respected - organizational supports in place". Following the above procedure, suggested questions for information gathering with the participant for "respect - outcomes present" included:
- How do staff treat you?
- How do people talk to and about you?
- Do people call you by your preferred name?
- How do you know if your opinions are valued and respected?
- What do you think about the things you do at home, school, work? Are they interesting? Boring?
- What do you think about the activities that you do? Are you learning or gaining things from these activities? Do they make you feel important? Is it a good use of your time?
- Do people listen to your comments and concerns?
- Do you think people treat you as important? (The Council on Quality and Leadership, 2017b, p. 56)
Then to determine if the "people are respected" outcome was present, based on the conversation, the participant must: (1.) be treated with respect by (if applicable): family members, residential support staff, roommates/housemates, employment support staff, day staff, co-workers, adult education staff, classmates, medical professionals, business community members, therapists/counselors, neighbors, and, others; (2.) have interactions with others that reflect concern for the person's opinions, feelings, and preferences; and, (3.) have opportunities to participate in challenging and interesting activities (The Council on Quality and Leadership, 2017b). If all three of the answers were not 'yes,' then the participant did not have the outcome present.
To decide if the "people are respected" organizational supports were in place, the interviewer was provided the following suggested question to utilize during the interview with the participant's staff:
- What is important to the person with regard to respect?
- What has been done to personalize the activities or interventions for the person?
- What benefits will these activities or interventions provide for this person?
- Is the person involved in all decisions affecting his or her life?
- How do you know if the person feels respected?
- How is respect considered in decisions regarding supports, services, and activities?
- Are there any barriers that affect the outcome for the person?
- How do you assist the person to overcome barriers to this outcome?
- What organizational practices, values, and activities support this outcome for the person? (The Council on Quality and Leadership, 2017b, p. 56)
Then to determine if the "people are respected" support was in place based on the conversation: (1.) the organization must know what is important to the person with regard to respect; (2.) the organization must act to ensure that interactions with the person are respectful; and, (3.) supports needed to enhance the person's self-image must be identified and implemented (The Council on Quality and Leadership, 2017b). All three answers to the previous must be 'yes' for the supports to be considered in place.
This study's first research question was: what factors predict disabled people being respected? The dependent variable (DV) was if the outcome was present for "people are respected" (yes (1) or no (0)). Demographic variables as well as the variables about organizational supports around respect served as the independent variables (IV). A binary logistic regression model was then run using SPSS 23 to determine which IVs had significant relationships with the DV. Univariate analyses were used to determine odds ratios.
The second research question was: how does being respected impact the quality of life of disabled people? For question two, multiple binary logistic regression models were run to determine the impact of being respected (outcomes present) (IV) on quality of life – the 20 other Personal Outcome Measures® indicators (each separate DVs). (Quality of life indicator definitions can be found in the Personal Outcome Measures® manual (The Council on Quality and Leadership, 2017b).) For all of the models, severity of impairment (i.e., daily support needs, complex medical support needs, and comprehensive behavioral support needs) was controlled. Bonferroni correction (.0025) was also used to counteract running multiple models. Univariate analyses were used to determine odds ratios for significant models.
The majority of participants felt treated with respect by those they interacted with, including family, staff, community members, and health care professionals (Table 2). More than three-quarters of participants (78.9%) believed interactions with others reflected concerns for their opinions, feelings, and preferences, and more than half of participants (65.9%) had the opportunity to participate in challenging and interesting activities. However, fewer participants – only slightly more than half (54.8%) – had all three of these criteria present (respect - outcome present).
|Person is treated with respect by||Family (n = 1169)||947||81.0%|
|Residential support staff (n = 1026)||840||81.9%|
|Roommates/housemates (n = 955)||751||78.6%|
|Employment support staff (n = 554)||474||87.1%|
|Day staff (n = 944)||848||89.8%|
|Co-workers (n = 624)||553||88.6%|
|Medical professionals (n = 1119)||1083||96.8%|
|Adult education staff (n = 94)||87||92.6%|
|Classmates (n = 94)||83||88.3%|
|Business community members (n = 863)||829||96.1%|
|Therapists/counselors (n = 764)||749||98.0%|
|Neighbors (n = 872)||828||95.0%|
|Others (n = 766)||727||94.9%|
|Interactions with others reflect concerns for person's opinions, feelings, and preferences (n = 1258)||992||78.9%|
|The person has the opportunity to participate in challenging and interesting activities (n = 1258)||829||65.9%|
|Respect - Outcome Present (n = 1413)||775||54.8%|
|The organization knows what is important to the person with regard to respect (n = 1264)||1005||79.5%|
|The organization ensures that interactions with the person are respectful (n = 1259)||1086||86.3%|
|Supports needed to enhance the person's self-images have been identified and implemented (n = 1260)||849||67.4%|
|Respect - Supports in Place (n = 1413)||849||60.1%|
|Quality of life indicators||Are safe (n = 1425)||1155||81.1%|
|Free from abuse and neglect (n = 1420)||929||65.4%|
|Best possible health (n = 1418)||992||70.0%|
|Exercise rights (n = 1418)||604||41.9%|
|Treated fairly (n = 1420)||803||55.6%|
|Continuity and security (n = 1419)||693||48.8%|
|Interact with others in the community (n = 1413)||864||61.1%|
|Live in integrated environments (n = 1412)||587||40.7%|
|Participate in the life of the community (n = 1416)||728||51.4%|
|Use environments (n = 1414)||940||66.5%|
|Intimate relationships (n = 1420)||652||45.9%|
|Have friends (n = 1408)||606||43.0%|
|Natural support networks (n = 1426)||676||47.4%|
|Decide when to share personal information (n = 1419)||722||50.9%|
|Perform different social roles (n = 1411)||556||39.4%|
|Choose with whom and where to live (n = 1415)||372||26.3%|
|Choose where to work (n = 1415)||473||32.8%|
|Choose services (n = 1413)||411||29.1%|
|Choose personal goals (n = 1414)||647||44.8%|
|Realize personal goals (n = 1414)||807||57.1%|
In terms of organizational supports, most often the organization knew what was important to the disabled person with regard to respect (79.5%) and ensured that interactions with the person were respectful (86.3%). However, less frequently supports were identified and implemented to enhance the person's self-image (67.4%). As a result, the respect supports were necessary to achieve respect – organizations providing all three types of these supports – for slightly more than half of participants (60.1%).
Likelihood to Be Respected
A binary logistic regression model was performed with the DV 'people are respected – outcome present' and the demographic and organizational support IVs to determine who was most/least likely be respected (research question one); the model was significant, -2LL = 563.93, χ2 (43) = 787.61, p < .001. The model, which correctly classified 89.9% of cases, explained 73.8% (Nagelkerke R2) of variance. See Table 3 for odds ratios. According to the univariate statistics, controlling for all other variables, men were 1.67 times more likely than women to be respected (outcome present). Black people were 2.36 times more likely than White people to have the respect outcome present. When all other variables were controlled, there was not a significant difference depending on primary communication method, disability type, or residence type. Compared to people with the lowest support needs (support as needed (on call)), people with 24/7 around the clock daily support were 7.69 times less likely to be respected, people with 12 to 23 hours 9.09 times less likely, people with 3 to 6 hours 9.33 times less likely, people with 0 to 3 hours 9.09 times less likely, and people with 'other' 12.50 times less likely. Disabled people with organizational supports in place were 166.73 times more likely to be respected than people without the "people are respected – supports in place."
|Variables||Category||Odds Ratio||95% Confidence Interval|
|Gender: Men (ref: women)||1.67*||1.05||2.67|
|Race/ethnicity (ref: White)||Black||2.36*||1.29||4.33|
|Latinx or Hispanic||0.69||0.20||2.33|
|Native American or Alaska Native||0.81||0.14||4.80|
|Other (Asian, Pacific Islander, Native Hawaiian, other)||0.54||0.07||4.14|
|Primary communication method (ref: verbal communication)||Sign language||2.44||0.05||108.35|
|Autism spectrum disorder||0.74||0.35||1.56|
|Hearing loss - severe or profound||0.76||0.39||1.48|
|Limited or no vision - legally blind||0.82||0.44||1.54|
|Other mental illness/psychiatric diagnosis||1.09||0.52||2.28|
|Seizure disorder/neurological problems||0.87||0.34||2.24|
|Residence type (ref: Own home/apartment)||Family's house||0.97||0.42||2.24|
|Host family/family foster care||0.97||0.22||4.29|
|Provider operated house or apartment||1.54||0.82||2.90|
|State operated HCBS group home||2.25||0.60||8.44|
|State operated ICFDD||0.67||0.19||2.45|
|Daily support (ref: on call - support as needed)||0 to 3 hours/day||0.11*||0.02||0.73|
|3 to 6 hours/day||0.12*||0.02||0.78|
|6 to 12 hours/day||0.24||0.04||1.49|
|12 to 23 hours/day||0.11*||0.02||0.71|
|24/7 - around the clock||0.13*||0.02||0.74|
|Complex medical support needs||1.14||0.52||2.51|
|Comprehensive behavioral support needs||0.49*||0.26||0.93|
|The organization knows what is important to the person with regard to respect||1.09||0.46||2.56|
|The organization ensures that interactions with the person are respectful||1.86||0.67||5.20|
|Supports needed to enhance person's self-image have been identified & implemented||0.71||0.23||2.15|
|Respect - Supports in Place||166.73***||50.27||552.95|
Note. *p<.05. **p<.01. ***p<.001.
Impact of Being Respected on Quality of Life
|Model||-2LL||df||χ2||Nagelkerke R2||Odds Ratio||95% Confidence Interval|
|Free from abuse and neglect***||1677.09||9||71.32||0.07||2.46***||1.95||3.10|
|Best possible health***||1496.19||9||150.74||0.15||4.18***||3.24||5.38|
|Continuity and security***||1672.81||9||202.68||0.19||4.28***||3.39||5.40|
|Interact with others in the community***||1617.30||9||179.54||0.17||3.34***||2.64||4.22|
|Live in integrated environments***||1519.75||9||315.30||0.28||3.49***||2.70||4.50|
|Participate in the life of the community***||1640.79||9||236.40||0.21||5.26***||4.16||6.66|
|Natural support networks***||1734.69||9||139.36||0.13||2.31***||1.84||2.90|
|Decide when to share personal information***||172.41||9||202.62||0.19||4.70***||3.72||5.94|
|Perform different social roles***||1666.94||9||138.91||0.13||3.31***||2.61||4.21|
|Choose with whom and where to live***||1245.71||9||307.78||0.30||3.52***||2.60||4.75|
|Choose where to work***||1567.59||9||141.13||0.14||3.05***||2.37||3.93|
|Choose personal goals***||1743.17||9||122.70||0.12||2.61***||2.07||3.27|
|Realize personal goals***||1770.39||9||78.78||0.08||1.77***||1.42||2.22|
Note. The independent variable for each model was 'respect - outcome present.' As proxy for impairment severity, all models control for hourly support needs, complex medical needs, and comprehensive behavioral support needs.
When binary logistic regression models were run with 'respect – outcome present' as the IV, and each quality of life indicator as a different DV, while controlling for impairment severity (daily support needs, complex medical support needs, and comprehensive behavioral support needs), all models were significant with Bonferroni's correction (.0025) (Table 4). Controlling for impairment severity, disabled people who are respected are approximately 2 times more likely to: realize personal goals; have natural support networks; and, be free from abuse and neglect (Figure 1). Disabled people who are respected are approximately 3 times more likely to: choose personal goals; choose where to work; perform different social roles; interact with others in the community; choose their services; use their environments; and, live in integrated environments. Disabled people who are respected are approximately 4 times more likely to: choose with whom and where to live; have intimate relationships; have best possible health; have continuity and security; and, be safe. Disabled people who are respected are approximately 5 times more likely to: have friends; decide when to share personal information; and, participate in the life of the community. Disabled people who are respected are approximately 6 times more likely to exercise rights. Disabled people who are respected are approximately 8 times more likely to be treated fairly.
In the United States, disabled people have long been denied respect. As such, the aim of this study was to explore the impact of respect on the quality of life of disabled people. Data from approximately 1,500 people with disabilities were analyzed to explore who was the most/least likely to be respected – disparities across factors – as well as if, and how, being respected impacts disabled peoples' quality of life. Our findings revealed being respected has a significant impact of every area of ones' quality of life. Problematically, this also included areas which should be considered non-negotiable fundamental human and civil rights that should not depend on if and how people respect disabled people. For example, the Office of the United Nations High Commissioner for Human Rights and World Health Organization (2008) explains, "the right to health is a fundamental part of our human rights and of our understanding of a life in dignity" (p. 5). Yet, disabled people in our study were four times less likely to have best possible health when they were not respected. Another example of non-negotiables that were impacted by if one was respected were safety, and freedom from abuse and neglect. While both were more likely to be present for those who were respected, the United Nations Universal Declaration of Human Rights (1948) and Convention on the Rights of Persons with Disabilities (CRPD) (2006) recognize these rights as fundamental.
Our findings that people who are not respected are more likely to experience rights limitations and less likely to receive appropriate due process when rights limitations are imposed (treated fairly) is concerning as "each individual in a society should have the same rights and obligations and be subject to the same set of rules" (Ogata, 1998, n.p.). The United Nations CRPD reinforces that disabled people are entitled to "full and equal enjoyment of all human rights and fundamental freedoms" (2006, n.p.). Moreover, by virtue of citizenship, disabled people are also entitled to civil rights; however, while in theory civil rights are designed to help protect people against oppressive abuse of power, disabled peoples' civil rights are often violated (Quinn & Degener, 2002). Historically, policy has been a source of disability oppression. For example, disabled peoples' rights to freedom and liberty were/are commonly violated by institutionalization (Braddock et al., 2015; Quinn & Degener, 2002). Mirrored by the inequalities and disparities unearthed in our findings, as Sociologist Carey (2009), whose contributions include analysis of citizenship and intellectual disability, notes, "America lacks a strong tradition of respecting human [and civil] rights" (p. 21).
More recently policy and litigation have been used to increase disabled peoples' access to civil rights and human rights in the United States. For example, the Americans with Disabilities Act (ADA) (1990) was designed as a civil rights law to eliminate discrimination and improve quality of life (Batavia & Schriner, 2001). Litigation, such as Olmstead v LC (1999), and regulations, such as the Medicaid Home and Community Based Services (HCBS) Settings Rule (Centers for Medicare and Medicaid Services, 2014), have also reinforced disabled peoples' right to community integration and personal choice. Both the ADA and Olmstead require disabled people receive supports in the most integrated settings possible and receive the same opportunities to access the community as nondisabled people; the Settings Rule also requires states provide meaningful community opportunities for disabled people receiving Medicaid HCBS. As such, the fact that disabled peoples' access to the community and meaningful engagement in and with the community may be significantly impacted by whether or not people respect them is concerning.
Despite some of these policy advances, the United States has yet to ratify the CRPD, even though it was designed based on the ADA. Not ratifying "the Convention 'undermines the importance of the convention and puts the [Untied States] in danger of losing its place as a world leader on the rights of people with disabilities'" (Kim, 2011, p. 98). Ratification is crucial as previous human rights conventions have failed to ensure rights were actually enacted for disabled people, including in the United States (Harpur, 2011). The CRPD is also important because it focuses on societal dimensions, including structural power and oppression, rather than just relationships with the State (Mégret, 2008). In doing so, the CRPD purports that disabled people have the ability to make informed choices, the right to equal opportunities, and the right to not be discriminated against. The United States' lack of ratification generates concerns regarding its ability to address human rights (Kashar, 2009). The "CRPD would allow American disability advocates to form important coalitions on the local, national, and international levels, enhancing their ability to take a more proactive role in the implementation of the ADA" (Kim, 2011, p. 98). Moreover, the impact of ratification, and standards the United States would thus be bound to, would not only impact the respect towards and rights of disabled people, but would also have a ripple effect, positively impacting so many other areas of life.
Rights limitations of disabled people in the United States, and the lack of opportunities they experience as a result, have always been deeply intertwined with discrimination, stereotypes, and attitudes towards disabled people – ableism. For example, pathologizing of disability lead to the forced institutionalization and sterilization of disabled people in the United States (Braddock & Parish, 2001; Tilley et al., 2012; Trent, 1994). In the present day, there are more nuanced understandings of disabled people, however, disability is still synonymous with ideas of "personal pathology, of individual difficulties and of dependency in the face of care" (Goodley, 1997, p. 369). As such, attitudes about disability are a fundamental aspect of respect towards disabled people.
Conceptions of disabled people as incapable, incompetent, or low ability are not only widely exaggerated, they also result in paternalism (Barnes & Mercer, 2003; Harris & Fiske, 2007; Reid, Stoughton, & Smith, 2006; Susman, 1994). This lack of respect limits disabled peoples' choices. For example, we found regardless of their impairment severity, disabled people were five times less likely to participate in the life of the community, which they are entitled to by the ADA (1990) and Olmstead (1999), if they were not respected. Similarly, disabled people were more often denied the opportunities to choose where they lived, where they worked, what their personal goals were, and how they received services, if not respected – all of which are specified as not only rights, but requirements, in the Settings Rule (Centers for Medicare and Medicaid Services, 2014). Equity for disabled people requires equal opportunities, including the opportunities to take risks; systemic barriers not only need to be reduced, but conceptualizations of disability need to be shifted so that they recognize the lived experiences of disabled people, rather than simply reflect harmful stereotypes and attitudes.
A good starting point would be to target some of the respect disparities unearthed in our study. For example, people with higher daily support needs as well as those with comprehensive behavioral support needs were significantly less likely to be respected, presumably because of stereotypes about disability, and the value of people with complex disabilities. Disabled women in our study were also less likely to be respected than disabled men, reflecting institutional and systemic sexism. As with nondisabled women, disabled women are more likely to face many disparities compared to disabled men, such as more limited opportunities, more violence, and lower wages (Baldwin & Johnson, 1995; Barger et al., 2009; Crawford & Ostrove, 2003; Fitzgerald & Withers, 2011; Nario—Redmond, 2010; Ostrove & Crawford, 2006). Given widespread and systemic racism, especially for disabled people of color, one would expect the same trends to occur with respect and disabled people of color (Annamma, Connor, & Ferri, 2013; Bell, 2006; Erevelles & Minear, 2010; O'Toole, 2013). Yet, in our study, Black disabled people were more likely to feel respected than White disabled people. More research is necessary to determine if these findings were sample specific, related to an unequal distribution of the study's sample, related to confounding relationships and interactions that were not explored, or if there were other factors at play.
Our findings also revealed that when disability service organizations know what is important to the person with regard to respect, when organizations ensure that interactions with the person are respectful, and when supports that enhance the person's self-image have been identified and implemented, that is when the "people are respected" organizational support is in place, disabled people are approximately 170 times more likely to be and feel respected than when organizations do not do these things. Despite the crucial role organizational supports can play in terms of respect, if organizations participate in only one of these roles, rather than all three, the impact on respect dissipates significantly, indicating it is important for organizations to provide supports in a myriad of diverse ways.
As part of the questions about respect, disabled people were also asked if they were treated with respect by people in different categories, ranging from family to community members to health care professionals. Compared to the other categories, disabled people in this study reported being most often treated with respect by therapists/counselors, and medical professionals. Given the medical system's individualization of disability and emphasis on functioning (Barnes & Mercer, 2003; Kudlick, 2003; Llewellyn & Hogan, 2000; Oliver, 1996), as well as documented experiences of medical professionals directing questions and discussion to disabled peoples' staff, family, or companions rather than disabled people themselves (Friedman et al., 2014), it is a bit surprising that medical professionals were one of the groups rated highest in terms of respectful treatment.
Disabled people in this study were less often treated with respect by roommates/housemates compared to all other categories. Disabled people who live in provider owned or operated homes are not always provided with the opportunity to choose their home or roommates (Robertson et al., 2001; Wehmeyer & Metzler, 1995; Wiltz, 2007). As a result, they might not be matched as well as if they had the opportunity to choose instead, resulting in tense relationships where they more often feel disrespected. In fact, people in this study who chose where and with whom they lived were much more likely to feel treated with respect by roommates/housemates than people who did not choose to live there.
Despite a range of values across categories (79% to 98%), disabled people felt treated with respect by all of the categories more often than one might expect given institutionalized ableism. It is possible that when determining if participants were treated by respect, subtle implicit prejudice was not always considered because it is harder to detect than overt explicit prejudice (Dovidio, 2001; Dovidio & Gaertner, 2004; Friedman, 2016, in press; Gaertner & Dovidio, 1986; Gaertner et al., 2005), and this contributed to inflated values. When interpreting these findings, it is also important to note that a lot of these questions in particular (compared to the rest of the respect questions) were skipped or left unanswered. It may be that the category simply did not apply, or there was not enough information to determine and that is why the item was skipped. For example, as participants were adults, the majority likely no longer have classmates or adult education staff, hence the low response rate. However, if some questions were skipped because participants did not want to dwell on bad experiences, or had become so familiar with microaggressions as commonplace (Keller & Galgay, 2010; Sue, 2010) that they did not feel a determination could be made, then it is likely the percentage of people who felt respected was inflated. More research is needed to determine if these trends are mirrored in other samples, and why people so frequently skipped questions about being treated with respect by certain groups of people. Moreover, qualitative research may be particularly fruitful to explore how disabled people interpret their experiences being respected and how that impacts their quality of life. Doing so would be useful not only to examine how people understand and internalize their experiences and interactions with others, but also to get at the more implicit and subtle forms of disrespect that may not have been apparent in this study.
When interpreting our findings, a number of limitations should be noted, particularly related to our sample. The majority of our participants were White, and had intellectual and developmental disabilities, which is not representative of the disability community. While our sample represented 21 states, it was also not representative of the United States as a whole as three states (New York, South Dakota, and Tennessee) had the most representation. Moreover, as the data was acquired from disability service organizations, only disabled people who receive some type of long term services or supports were represented. Another limitation is that the majority of participants used verbal/spoken language as their primary method of communication; participants using other communication methods (e.g., sign language, communication devices, facial/body expressions) may have different experience with being and feeling respected. It should also be noted that as this was a secondary data analysis; the author did not have the ability to ask additional questions or add additional research variables. Finally, although Bonferroni correction was used to control for the use of multiple models for research question two, Bonferroni correction is a conservative measure.
All people are entitled to human rights, including the right to be respected (Annan, 2005). Yet, the disabled people in our study were problematically more likely to have a number of rights present when they were respected than when they were not respected. While the attitudes underlying the disrespect of disabled people are harmful and problematic, human and civil rights should be inalienable – ones' access to exercise their rights, to safety, to health, and to many other domains, should not depend on others' attitudes and treatment toward you.
Ableism is extremely prominent; as such, Disability Studies scholars have long called for ableism to be dismantled. Disabled people will not fully be respected, or have equity of opportunity, nor control over their own lives until this systemic discrimination is reduced significantly. While as Darwall (1977) notes, what respect "requires […] is not a matter of general agreement," respect of and for disabled people means not only counteracting continuing discrimination, but recognizing their full personhood, ensuring they have opportunities, including the opportunities to make choices and take risks, and recognizing disability as an identity and community. When disabled people are respected, they have a better quality of life.
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