Vision and mission
Vision
The vision of the Washington state collaboration (Disability Rights Washington, Washington Coalition of Sexual Assault Programs and Washington State Long-Term Care Ombudsman) is:
People living in long-term care settings experience safe, respectful and dignified environments over which they exert control, self-determination and independence. Long-term care environments communicate that residents are entitled to live free from violence, abuse and neglect with support to make choices about their sexuality, healing and justice pursuits. A strong system of advocacy responds to sexual violence in a trauma-informed, survivor-centered manner at every level. Care providers, organizations and public entities are self-aware of the risks of violence in long-term care settings. All are accountable to the people they serve and promote a model of non-tolerance of sexual violence.
Mission
The mission of the Washington State collaboration, Disability Rights Washington, Washington Coalition of Sexual Assault Programs and Washington State Long-term Care Ombudsman, is to:
- Create networks of providers, long-term care residents, individuals with disabilities, and anti-sexual assault, long-term care and disability advocates who have the ability to create long-term care environments which are respectful and safe, and
- Restore trust in the system through authentic long-term care system reform and transformation infused with cultural and disability humility, empowered residents and champions at every level who act against sexual violence.
The collaboration:
- Supports survivors to find their own voice, make their own choices and take action by providing advocacy training, skills and system knowledge;
- Connects residents to advocates who are trained in the needs and circumstances of survivors in long-term care settings;
- Creates platforms to expose the truth about sexual violence in long-term care settings and highlight how the current system promotes vulnerability;
- Uses our influence and expertise to provide tools for change;
- Creates models and benchmarks for achieving a violence and retaliation-free environment in long-term care settings; and
- Cultivates trauma-informed practices at our agencies and assure our statewide constituents know how to prevent violence and respond to survivors.
Values and Assumptions
The Washington state collaboration generated the following agreed-upon definitions for use in our collaborative: 1) values inherent to our work together and 2) collective assumptions we share, which shape our work, and which may or may not be challenged or redefined as our collaboration moves forward to the needs assessment, strategic planning and implementation processes. The partners will endeavor to represent these values and assumptions in our work with each other and with survivors of sexual violence in long-term care settings.
Values
Access
Full access is beyond physical and language access; the partnership meets people where they are; is intentional in thought about reaching survivors and those with increased potential for victimization; the survivors’ experiences influence and infuse the work of the partnership and the partner organizations to meet the needs of the survivors.
Advocacy
Advocacy is the way survivors: 1. Assert their preferences on the systems in order to get their needs met (self-determination), 2. Navigate and eliminate barriers to their well-being when systems are inadequate or have institutional biases that are not responsive or may even foster conditions that increase the risk of victimization.
Allies
Allies are people who recognize the unearned privilege they receive from society’s patterns of injustice and take responsibility for mitigating those injustices. Violence and abuse in the lives of people with disabilities is not separate from the broader community problem of violence. Allies’ actions are not driven by charity or pity. They are driven by the need to create a more just world and are part of the broader community response which recognizes that the quality of life for everyone increases when injustices and violence against people with disabilities are addressed.
Autonomy
Autonomy is an individual’s inherent right to be, govern one’s being and exercise one’s own will in relationship to varying degrees of capacity. People who have been identified as not having capacity to make decisions retain their right to autonomy through supportive and substituted decision-makers.
Confidentiality
Keeping a person’s trust or confidence with spoken, written and acted-upon information by an individual or organization(s).
Cultural and disability humility
Collaborative partners avoid an assumption of cultural competence, and work from an approach of respectful inquiry, non-judgment and support. Cultural humility is a practice of awareness of bias and oppression with respectful communication that permits exploration of similarities and differences. The collaborative acknowledges the value of approaching everything with unique perspective.
Deinstitutionalization
We, the Washington collaborative, value de-institutionalization, and bring a belief that all human beings should live where and as they chose, with autonomy to the greatest extent possible. (See institutionalization assumption, below.)
Dignity
Dignity is a term used in moral, ethical, legal, and political discussions to signify that a person has an innate human right to be valued and receive ethical treatment. The Washington collaborative operates under the assumption that all work is done in a manner to promote dignity to individuals in long-term care, especially those who have experienced sexual violence.
Disability humility
Disability humility is a practice, with awareness of disability-based bias and oppression, of respectful inquiry that permits exploration of similarities and differences. The Washington collaborative operates from openness to learning and understanding, with humility to better understand disability. The survivor with a disability is always the expert. (See also cultural humility.)
Inclusion
The intentional action or state wherein, to the greatest extent possible, the collaborative welcomes others, assures full accessibility and promotes the greatest level of autonomy and independence so all may include or be included within a long-term care setting.
No Pity
“Pity is prejudice disguised as charity.”
Pity undermines the ability of people to exercise power and choice. This philosophy is a key tenet of the disability rights movement and a value under which the Washington collaborative operates.
Nothing about us without us
Nothing about us without us is another key tenet of the disability rights movement, which carries the notion that no decisions should be made on behalf of someone unless that individual is present in the decision-making process to the greatest extent possible. Washington partners recognize that failure to do this overrides one’s will and operate under the premise of honoring the greatest level of choice, autonomy and individual freedom possible.
People first language
This is also known as respectful language. The underlying premise is that an individual is a person first, and disability is a secondary characteristic. One’s identity and being is not hinged upon disability. The way disability is described, then, is “person first,” i.e.; individual with a disability, person with autism, woman with Down syndrome, etc. Labels such as autistic, mentally retarded, suffering, afflicted, handicapped, etc. are not used in people first language. There is movement to remove the ‘mental retardation’ label from state and federal statute. Washington has adopted a law to use respectful language. Rosa’s Law does the same thing at the Federal level. The Washington collaboration use respectful language in their work.
Person directed/self-directed
Self-directed services and supports accumulate around an individual, based on one’s expressed choice, with deference to one’s supported decision-making. A person with a disability directs services, choosing what is most needed to attain independent living and full engagement in life, in a manner that is self-determined. The Washington collaboration recognize this as the ideal model for long-term care settings, where deference is given to individual preference.
Respect
A human right to confer, with humility, proper acceptance, courtesy and acknowledgment to each human being. Respect is a word that grants value to a people regardless of ability, race, gender, socioeconomic status, sexual identity, etc. “I respect you as an authority/expert on your experience.” Respect is connected to choice, autonomy, and empowerment. Lack of respect dehumanizes an individual and fosters environments conducive to sexual violence.
Respectful language
“Once you label me, you negate me.” Soren Kierkegaard
Respectful language to some is synonymous with ‘people first’ language, wherein the individual is a person first, and disability is a secondary characteristic. One’s identity and being is not hinged upon disability.
Survivors often do not use the same language that domestic violence or sexual assault advocates do to define what happened to them. Mirroring the language survivors use is also respectful language. Of significance, there are some within the disability community who do not use People First language, because disability is recognized as a core attribute, and “not something that needs to be separated from me by way of a prepositional phrase.” Within the Autistic Self Advocacy Network, for example, people are proud to be “autistic,” a term considered offensive among those who use People First language. These entities insist there is power and pride in claiming one’s disability.
In Washington, a group of people who experience intellectual disabilities recently illustrated the problem with any label, specifically in relation to being called, “self-advocates:”
“Self-advocacy used to be a verb. Self-advocates became a noun used to differentiate you from me. As long as language is used to segregate us, it will become offensive. If you want to know what to call me, you can use my name.”
The Washington collaboration acknowledges all the ways in which an individual does or does not self-identify with disability, abuse and/or survivorship, and defers to individual preference when determining what constitutes “respectful.”
Self-advocacy
The process of standing up for oneself and one’s rights and beliefs, valued by this collaborative because every individual has a right to a self-determined, self-directed life. Self-advocacy is also considered a movement within the overarching disability rights struggle, wherein those with disabilities evolve law, public policy and systemic change to reclaim power and control over their own lives.
Self-determination
The capacity to build one’s dreams and believe in and follow them is self-determination. The Washington collaboration recognizes there is no disability so severe that it could impede one’s self-determination.
Social justice
Social justice is a philosophy that promotes equity among all members of society. It supports a world where there is a balance of power and where societal structures and members operate in an equitable relationship to each other. Social justice also demands that all people have a right to basic human dignity and to have their basic economic needs met. Constructions such as oppression and intersectionality fall within this framework. (See assumptions and key terms.) The collaboration adopts a social justice framework, recognizing this as a basis of human dignity. (Adapted: www.nonviolenceandsocialjustice.org/FAQs/What-is-Social-Justice/43/)
Supported decision-making
Supported decision-making is a process within a movement toward disability rights, where an individual’s autonomy, dignity and choice are respected in making decisions. Decisions are made through a supportive and informed process, to the greatest extent possible, by an individual with a disability. Supports are put in place so that decisions are not made without an individual’s input, buy-in, or due consideration of the individual’s expressed wishes. The supported decision-making practice ensures a survivor is able to exercise rights, choices and preferences.
Systems change/systems advocacy
Systems change or systems advocacy involves an entire system and its institutionalized processes. When barriers or problems are institutionalized and system-wide they require responses and strategies which focus advocacy efforts on policies, practices and procedures. All three partners in this collaboration engage in systems advocacy.
Trauma-informed services
Trauma-informed services “incorporate knowledge about trauma – prevalence, impact, and recovery – in all aspects of service delivery, minimize re-victimization, and facilitate recovery and empowerment” (Fallot, Wisconsin Trauma Summit, 2007, as cited in Hudson, n.d.). Trauma informed services have been shown to be effective in facilitating the healing, recovery and justice pursuits of survivors of sexual violence.
Universal design
The design, construction and implementation of products, architecture, environments, services and systems that can be used by all people, to the greatest extent possible, without additional adaptation or accommodation. Universal design increases everyone’s access, competency and the sense of being welcomed and included.
Victim-centered philosophy
Responses to violence that are survivor-centered are more likely to meet the needs of survivors of violence. Systems of response that do not focus on the survivor may increase the risk of violence and the barriers to violence-free environments.
Vulnerability
Though vulnerability often carries a connotation of weakness and many strive to avoid vulnerability, it is recognized in this collaboration as a characteristic all people share, and one which connects and ultimately strengthens us. This acknowledgement should empower, not disempower an individual within any given system. Vulnerability in relation to the process of being human is a value of this collaboration. (See also vulnerable adult statute under assumptions.)
Assumptions
“Today’s (disability) gulag characterizes isolation and control as care and protection, and the disappearances are often called voluntary placements. However, you don’t vanish because that’s what you want or need. You vanish because that’s what the state offers. You make your choice from an array of one.” Harriet McBryde Johnson, Disability Rights Activist
Every adult, no matter the setting, age or disability, has a right to:
- express their sexuality
- live free from sexual violence, and
- have equal access to make choices about services, healing and justice pursuits.
Systems have a responsibility to promote safe, empowering environments. The work of this collaboration will enhance the ability of the partners to make systemic changes within and between the organizations to benefit the people we serve.
The following concepts are assumptions under which this collaboration operates.
Abuse
The collaboration’s definition of abuse incorporates violence, threats of violence, harassment, neglect, coercion, influence and intimidation to hurt, control, manipulate and humiliate an individual with a disability in long-term care settings.
Charity
In disability culture (and perhaps with other minority cultures who have experienced institutional oppression), charity is regarded as something that reinforces a power differential, keeping an individual or group subjugated or dependent. Charity may take power away and reinforce victimhood. Survivors must remain in control of services, supports and their healing and well-being.
Big D little D Deaf/deaf
Individuals who experience significant hearing loss may refer to themselves as “deaf,” with a small “d” denoting the physical experience. Individuals who identify with Deaf culture often use a capital “D” for Deaf. In Deaf culture, sign language is acknowledged as a language in its own right, and individuals reject a “cure” to Deafness as an offensive, medical model approach to their experience. Cochlear implants may be taboo to some, and life-altering to others. Many in Deaf culture do not equate being Deaf as having a disability. The Washington collaboration meets people wherever they self-identify, and then moves forward.
Disability
Disability is a broad term to signify any mental, sensory, cognitive, emotional and/or physical characteristic that, in conjunction with societal values, may limit a person’s physical or emotional well-being or ability. Disability is a complex phenomenon, reflecting the interaction between features of a person’s mind or body and features of the society in which one lives. People may or may not identify with disability.
Discharge plan
A rights-based process wherein one leaves a facility with autonomy, appropriate supports and assistance. Not everyone in long-term care is aware of the rights inherent in discharge planning. The collaborative promotes an understanding of these rights.
Ecological model of abuse
In this model, abuse itself becomes institutionalized. Ignorance contributes to abuse. Grooming is tolerated. Control, isolation, violent oppression, harassment, neglect, coercion, threats of violence, influence and intimidation are utilized, or even condoned, to hurt, control, manipulate and humiliate individuals with disabilities in any long-term care setting. Fear of failure or retaliation precludes standing up against abuse and perpetuates a cycle of dehumanization of those with disabilities. The Washington collaboration promotes bystander allyship to mitigate abuse in systems where it is endemic.
Institutionalization
Phenomenon created by long-term care systems that effect people put into congregate living, characterized by confinement, dependency, loss of autonomy and control. These characteristics degrade one’s personhood. The institution creates barriers to an individual’s right to self-actualization and full access. Institutionalizations diminish human efficacy – that no matter what one says or does – the system does not respond to me, and if it responds, all it says is I am to be blamed and/or that I don’t matter. This is the fault of the institution and not the individual. We, the Washington collaboration, value de-institutionalization, and bring a belief that all human beings should live where and as they chose, with autonomy to the greatest extent possible.
Intersectionality
The awareness that discrimination based upon various biological, social and cultural realities such as gender, race, class, ability, sexual orientation, disability, and other aspects of a person’s life interact on multiple and simultaneous levels, contributing to systematic social inequality. Intersectionality holds that the classical conceptualizations of oppression within society such as racism, ableism, sexism, homophobia, and religion- or belief-based bigotry do not act independently of one another; instead, these forms of oppression interrelate, creating a system of oppression that reflects the “intersectionality” of multiple forms of discrimination. The collaborative operates under the assumption that oppression is the root cause of violence, and layers of oppression create an increased risk of victimization. The collaborative does not discount the loss of power heightened by this process. We hold this as truth.
Mental age/adaptive age/functional age
Often with psychological or IQ assessments, individuals with developmental/intellectual disabilities are assigned an “adaptive” or “mental” age. This is also sometimes referred to as a “functional” age, or “global age of functioning.”
This number can be very damaging to the autonomy or personal development of an individual with a disability, as services, benefits, or human rights are subscribed to a number and not an individual. Expectations are lowered, people are infantilized and invasive or experimental medical procedures are justified based on this number. For example, based on a mental age, high school students with disabilities do not always receive sexual education that is provided to their peers. The Washington collaboration partners operate under the assumption that no individual is reduced to a number or set of circumstances, and we each deserve to have a life full of chosen experiences relegated to the process of being human, and not a number.
Power
“Who are you to give me power? I already have it.” The Washington collaboration operates under the assumption that every human being is inherently powerful, and honors the capacity of each individual to hold one’s truth. Power may be used to exert control or influence others in a positive or negative capacity, and privilege may provide some with perceived power; but every human being has a voice, a truth and a claim to individualized empowerment.
“Power and control”
Power and control is the foundational way the anti-violence movements talk about abuse and assault. The abuser uses a range of tactics to maintain power and control over a survivor. Survivors are adept and have acquired skills to counter these tactics to survive everyday life. The Washington collaboration utilizes the caregiver wheel of power and control for long-term care model. The collaborative acknowledges an institutional or systemic correlation to the wheel and long-term care settings; for example, you can shower once a week, but you have to be rolled down the hall in a shower chair wrapped solely in a bed sheet. This degradation becomes the norm. http://www.endingviolence.org/files/uploads/DisabledCaregiverPCwheel.pdf
Privilege
The unquestioned and unearned set of advantages, entitlements, benefits, and choices bestowed on people solely because they are a member of a prevailing advantaged social group (white people, men, heterosexuals, colorism in communities of color, socioeconomic advantage in communities of color, etc.) The Washington collaboration recognizes oppression stems from this attitude to those who are not members of the prevailing social group, and defaults to the premise that each individual is powerful, regardless of preconceived notions of privilege.
Responsibility/liability defense
The act and argument of assuming control and decision-making, for purposes of liability or institutional priority, overrides the choices of another human being and results in disempowerment. This common defense reverberates with “I am in charge of this person, if something happens I am responsible,” without acknowledgement that one’s autonomy and dignity are the cost. An appropriate assumption of responsibility would secure services, options, advice, etc. for an individual, acknowledging that the choices of the individual are foremost.
“She”
“She” is a gendered term used frequently to refer to violence perpetrated against women. While sexual violence does occur to males, females are more frequently impacted. “She” tends to be the default pronoun used when talking about survivors, but this is starting to change among providers in the field, to be more inclusive of all survivors – women, men, and people who identify outside the gender binary. Men with disabilities experience higher rates of sexual assault than men without disabilities, but not a higher rate than women with disabilities. The collaboration operates from an inclusive perspective.
Vulnerable adult statute
A person included in this definition is entitled to certain protections and services. However, people may not identify themselves a vulnerable or want the label of “vulnerable adult”. This label may devalue people.
Wheel of power and control in long-term care
An adaptation of this wheel designed for individuals with disabilities shows the dynamics of power and control may have specific attributes in long-term care which must be understood to effectively support survivors.