When Grief Is Overlooked or Dismissed

A wooden gate sits at the end of a path that leads into a forest.

Grief is not always recognised for what it is. It can be missed, minimised, or explained away, especially when it does not look the way others expect. For individuals in the IDD community, this happens more often than it should.

There is a tendency to view grief through a narrow lens. It is expected to be visible, expressed in certain ways, and to follow a pattern that others can understand. When it does not, it can be dismissed as something else. Behaviour may be labelled as challenging. Emotional responses may be misunderstood or overlooked entirely. In these moments, the grief itself is not seen.

This is often referred to as disenfranchised grief.

It is grief that is not fully acknowledged or supported. It exists, but it is not always given the same recognition as other forms of loss. For individuals in the IDD community, this can happen when their understanding is underestimated, when they are not included in conversations about death, or when their responses are not recognised as grief.

When grief is overlooked in this way, it creates a gap.

A gap between what a person is experiencing and the support they receive. A gap between loss and recognition. Over time, this gap can widen, particularly when losses are not singular or isolated. Many individuals experience multiple forms of loss across their lives—changes in relationships, environments, routines, and health. These experiences can build, creating what is often described as complex and cumulative grief.

Grief that is not recognised does not disappear. It becomes harder to carry alone.

There is also an important connection between grief and agency.

Agency is not just a vital resource after experiencing loss and during grieving. A person's access to agency is formed and reformed in every aspect of their life, influencing how they perceive themselves and the possibilities they envision for their future. It could be suggested that agency becomes even more significant for someone closely acquainted with loss, death, and grief. Agency plays a crucial role in one's capacity to create new meanings or embark on new actions, as loss, death, and grief are frequently seen as an invitation, or even a necessity, to develop new meanings or undertake new actions.

Agency is the ability to have a voice in one’s own experience. To be included in decisions. To be informed about what is happening. In the context of death and dying, this becomes especially significant. When individuals are excluded from conversations or decisions about loss, it can deepen the sense of disconnection. Grief is not only about what has been lost, but also about how that loss is experienced and understood.

Supporting agency means creating opportunities for inclusion. It means sharing information in ways that are accessible and clear. It means allowing individuals to participate in rituals, conversations, and decisions that affect them. This is not always easy, and it requires a shift in how support is offered, but it is essential in ensuring that grief is not something that happens around a person, but something they are supported through.

There is growing awareness of the need for more equitable approaches to death and dying within the IDD community. What is sometimes referred to as a “good transition” is not defined by a single outcome, but by the presence of dignity, inclusion, and support throughout the process. It recognises that every person deserves to be seen, heard, and supported in a way that reflects their needs and their understanding.

Advocacy plays an important role in this.

It brings attention to the gaps that exist. It challenges assumptions about who is able to understand and participate in conversations about grief and loss. It asks for systems and supports that are more responsive, more inclusive, and more aware of the lived experiences of individuals in the IDD community.

Change does not happen all at once. It begins with recognition.

Recognising that grief may be present, even when it is not clearly expressed. Recognising that behaviour may be communication. Recognising that exclusion, even when unintentional, has an impact. And recognising that support is not only about what is offered, but about who and how they are included.

When grief is acknowledged and individuals are supported with agency and understanding, something shifts. The experience of loss is no longer something that is carried in isolation or confusion. It becomes something that can be shared, understood, and integrated.

And that is where meaningful support begins.