What does it mean to be an “ally?”

The dictionary defines “ally” as “one that is associated with another as a helper: a person or group that provides assistance and support in an ongoing effort, activity, or struggle.” While this site is constructed to inform candidates for office on the issues, needs, and preferences of people with developmental disabilities and their families, it can also be used as a space for learning and support for anyone who wants to be a better ally to developmentally disabled people in Washington State.

What is Ableism?

TALILA A. LEWIS, who is a Social Justice Engineer, Educator, Organizer, Attorney and Artist, offers a wonderful and profound definition of Ableism. TL writes that Ableism is,

“A system of assigning value to people's bodies and minds based on societally constructed ideas of normalcy, productivity, desirability, intelligence, excellence, and fitness. These constructed ideas are deeply rooted in eugenics, anti-Blackness, misogyny, colonialism, imperialism, and capitalism. This systemic oppression that leads to people and society determining people's value based on their culture, age, language, appearance, religion, birth or living place, "health/wellness", and/or their ability to satisfactorily re/produce, "excel" and "behave." You do not have to be disabled to experience ableism.” https://www.talilalewis.com/blog/working-definition-of-ableism-january-2022-update

Ableism is still largely invisible to non-disabled people. Ableism is a form of oppression that is used to silence, minimize, marginalize, and other people. Ableism rewards capitalistic outputs and contributions and demonizes, shames, and impoverishes people who cannot produce or contribute in a way that capitalism deems worthy and acceptable. Ableism describes people with developmental disabilities as “drains” on the state. Ableism gives permission for disabled children to be segregated and abused at school. Ableism is perpetuated by a medical model of disability that aims to make bodies and minds “normal” at the expense of the disabled person. Ableism takes the pressure off of non-disabled people to create a community where nonconforming bodies and minds belong and receive support.

How should I talk to and about a person with developmental disabilities?

Using antiquated language can alienate people, especially people in marginalized communities. The disability community is no different. Whether we are talking to or about a person who identifies as LGBTQIA+, Native/Two-Spirit/Indigenous, BIPOC, Mad, Disabled, or person with developmental disabilities, we owe it to one another to stay on top of language to ensure precision and avoid erasing people’s identities.

As with other marginalized groups and identities, the best advice is to *ask* the impacted person directly about their preferences. If you have asked the person directly about their preferences, and their preferences cannot be communicated to you for whatever reason, please take a few moments to learn how to be responsive and respectful. Only after you have attempted to engage directly with the person with a disability is it appropriate to look to a caregiver/family member for help communicating. Communication partners are critical to a person’s ability to access their community, but the person with a disability should be given the dignity and autonomy and space to engage with you. Asking about people’s preferred terminology shows that you care and want to honor all the parts of their identity that they are willing to share.

The developmental disability community is not a monolith. There are a wide variety of beliefs, impacts, and outlooks. While we make every effort to honor the needs and preferences of families, caregivers, allies and friends, this PAC aims primarily to improve the lives of people with developmental disabilities, honoring all of the identities and rich communities in which they participate and identify. Focusing on improving the lives of people with developmental disabilities by definition will improve the lives of people who love and support them.

Why do we urge eliminating euphemisms?

A euphemism is a phrase you use when you’re embarrassed or uncomfortable saying something directly. For example, euphemisms such as “differently abled” or “special needs” are frequently used to describe a person with a disability. Using euphemisms to describe a person with a disability implies that the word disability is bad or embarrassing. The euphemism is problematic because it erases a person’s support needs, it erases the caregivers contributions to ensuring that support need is met, and it creates mystery around the disabled person.

For example, the need to eat is not special. The need to breathe is not special. The need to move is not special. The need to use the bathroom is not special. The need to shower is not special. Yet, when we describe someone as “special needs,” we not only take away the legal and policy framework in which that person’s support needs may be derived, but we erase the person who supplies nutrition. We erase the person who ensures a tracheostomy or ventilator is properly working. We erase the person who may be doing physical transfers to and from the shower or the commode. Euphemisms erase the labor of the caregiver, who is often a woman, and who is often (not always) the parent or close family member.

For the same reasons we don’t describe a person as “differently colored” to refer to people of color, we believe that the word disabled is not bad or anything to be embarrassed or ashamed of. Eliminating euphemisms is an important first step to ensuring that a person’s disability and accompanying support needs are fully acknowledged, and by doing so, we have a higher chance of getting their support needs fully addressed and more meaningfully represented in our state’s budget.

What is “people first” language?

“People first” language means the person prefers to be referred to as a person first, rather than their identity first. This will sound like, a “person with Down Syndrome” or a person with cerebral palsy, or a person with a developmental disability. People first language is used to honor that people with disabilities are people who are worthy of being noticed and celebrated and planned for, just like other people.

What is “identity first” language?

“Identity first” language means the person prefers to lead with their disability when describing themselves. This could sound like, “I am Autistic” or “I am blind, Deaf or Hard of Hearing.” This PAC uses people first language and identity first language in an effort to acknowledge and honor different preferences.

Why we don’t use “functioning labels” when talking about our friends, neighbors, and loved ones with developmental disabilities?

Functioning labels can sound like, “Bob is high functioning.” Or “Bob is low functioning.” The problem with this language is its imprecision, and it is typically used to either deny people autonomy or supports. Bob may need support to ensure that he does not become a victim of financial exploitation. But many older people need those same supports and we do not call them “low functioning” and deny their autonomy to make different financial decisions than others would make. A disabled person may need supports in the bathroom. But many younger and older people need supports in the bathroom, and we do not call them “low functioning.” A disabled person may need help preparing meals. And again, many other people need help with meals and we do not assign them functioning labels because of this support need. The broad brush strokes of functioning labels harm both the person being discussed and the caregiver(s) whose (often uncompensated) caregiving support contributions are erased.

Instead of functioning labels, it is best to unpack a person’s support needs so that everyone knows exactly what a person needs to thrive in their community. For example, “Bob needs help with transportation and grocery shopping. Bob can use the bathroom by himself at home, but he needs help using the bathroom in public. Bob needs support cooking meals and ensuring safe food storage, but he can feed himself.” When it is necessary to do so, unpacking people’s support needs rather than dismissing someone as high or low functioning at once honors the person’s dignity and autonomy, while (hopefully) ensuring proper supports are assessed and planned for.

Why we don’t use “mental age theory” when talking about our friends and loved ones with developmental disabilities?

Mental age theory sounds like, “Suzie has the mind of a three year old.” Often, the speaker is trying to convey that Suzie does not have the capacity to make a decision or to be at home alone without safety supports. However, statements like this are a clumsy and infantilizing way to describe a person’s incapacity or support needs. The problem with this approach is that a person may not lack capacity to make all decisions that impact them. A person may need help in the restroom, but may be able to program computers or play a video game. A person may need to be supervised so that they do not leave a gas stove on, but they may be able to travel across the country unaccompanied. Using imprecise language can impair a person’s autonomy and sense of dignity.

Referring to a person who “functions like a 3 year old” is problematic because it implies that the person never becomes an adult, never has autonomy over their body or their decisions, and may experience unnecessary living restrictions. Many adults and children who need caregiving support can make at least some decisions for themselves, and should be supported and free to do so whenever possible.

Mental age theory is also problematic for the caregiver responsible for supporting the adult. Many adults who need caregiving support may need more or radically different caregiving than a three year old child. Mental age theory, functioning labels, and euphemisms tend to not only erase the autonomy of the person with the developmental disability, but also mask the significant caregiving supports families often provide at great financial and physical expense. For these reasons, we encourage updating language when talking about people with developmental disabilities and their families.

What does it mean to presume competence?

Presuming a person is competent does not mean that we pretend a person is not disabled, or does not have critical support needs that, if go unmet, preclude them from participating in daily life or even accessing humane living standards. What presuming competence means is that we give each person the dignity of risk and respect of assuming that they can speak and think for themselves; that each person, regardless of whether they can communicate it in a way a non disabled person can receive, is capable and worthy of participating in decisions about their lives to the greatest extent possible. Again, presuming competence does not mean that we presume someone does not need support or assistance to live their life. Pretending that someone is not disabled has the effect of denying their support needs and erasing their identity as a disabled person which also has harmful consequences.

What does neurodiverse affirming mean?

Neurodiverse affirming means recognizing that intellectual disabilities (which is included in the definition of developmental disabilities) are a normal part of the human condition. People are diverse in a myriad of ways and neurodiversity is just beginning to be recognized as a normal and typical way of being in the world that should be planned for from the beginning of a person’s life, especially by institutions such as schools, daycares, social service delivery systems, anti-poverty campaigns, DEI trainers, legal systems, caregiving supports, and any other institution that exists to serve humans. Affirming a part of anyone’s identity is akin to showing a person you value them and their contributions just as they are. Naming neurodiversity (and really understanding and centering it) as part of your inclusion and equity planning is critical to claiming your care and concern for the community.

What is DDA?

The Developmental Disabilities Administration (DDA) is housed within the Department of Social and Health Services (DSHS). Many people with developmental disabilities receive services and supports through DDA, and must be DDA eligible to qualify for necessary support services. There are other agencies that disabled and aging people and their families interface with, but DDA is the primary agency most developmentally disabled people use in Washington State.

What is a waiver?

A waiver is simply a menu of federally approved services and supports that could be available to a person who is DDA eligible. That a person qualifies for a waiver does not guarantee they will receive the supports available on the waiver, or the supports they truly need or want to live in the community. Many people report that services and supports are unavailable in their communities, inaccessible due to not providing personal care or other supports, or that there are long wait lists to receive the service. Many people report that services are not accountable or responsive to their support needs. Many people report barriers to accessing basic information about waivers or the services waivers offer. Many people report feeling like they got lucky when they do find and retain a service or qualified caregiver. Many people report inadequate interpretation and translation in accessing waiver supports, and a lack of culturally responsive services.