the dark side of advocates

The Dark Side of Disability Advocacy: Inclusivity, Hierarchies, and Respect for Different Journeys

Disability advocacy is a crucial movement that seeks to uplift marginalized voices, promote inclusivity, and ensure that the needs of people with disabilities are met. However, as with any movement, there are areas of concern that, if left unaddressed, can create harm within the very community advocacy seeks to protect. Issues like hierarchy, exclusion, and manipulation are all too common and must be discussed if we are to build a truly inclusive space for all.

The Hierarchy of Disability: Exclusion of Hidden Disabilities

One of the most concerning aspects within disability advocacy is the development of an unspoken hierarchy—where individuals with visible or more severe disabilities often dominate the conversation, leaving those with hidden or higher-functioning disabilities feeling excluded. This hierarchy is not only harmful but also counterproductive to the goals of true inclusivity.

Higher-functioning individuals, particularly those with hidden disabilities like chronic pain, mental health conditions, or sensory disabilities, often face unique challenges that are downplayed or dismissed in advocacy spaces. This creates a divisive "us vs. them" mentality, where the struggles of some are seen as less valid or worthy of attention.

The Impact: Advocacy must represent all voices, not just those with more visible or severe disabilities. By dismantling this hierarchy, we can ensure that no one’s experience is invalidated and that all individuals, regardless of the nature of their disability, are included in the movement.

The Value of Work: Respecting Different Goals and Paths

For many people with disabilities, work is about more than earning a paycheck—it’s about purpose, dignity, and contributing to society in whatever way their disability allows. However, within the disability community, there can sometimes be a lack of understanding or respect for those who choose to work or make it their goal to join the workforce.

Some individuals have been placed directly on disability pensions, often never having the chance to work. While these support systems are essential for those who cannot work, it’s important to recognize that work itself holds a different value for different people. For some, the opportunity to work is a personal goal—something that brings fulfillment, independence, and a sense of accomplishment. Dismissing these aspirations creates further division within the community.

The Impact: Advocacy needs to respect the diversity of goals within the community. While disability pensions are a lifeline for many, we must also honor those whose disability journey includes the desire to work and contribute. This is not just about finances but about personal growth and self-determination.

Lived Experience: A Diverse and Necessary Voice

Lived experience is often touted as the cornerstone of disability advocacy. But what does "lived experience" really mean? It can come in many forms. For some, it’s the personal experience of living with a disability. For others, it’s the insight gained from working as a support worker, community nurse, or even being a parent of a child with disabilities. Each of these perspectives is valuable, and they all deserve a place at the table.

We must recognize that lived experience doesn’t have a single definition, and each viewpoint offers a unique perspective on how disability is navigated in daily life. However, with that lived experience comes a level of accountability. Advocates—whether they are individuals with disabilities, caregivers, or professionals in the disability space—have a responsibility to represent their experience honestly and consider how their advocacy affects the broader community.

The Impact: True inclusivity means embracing the diversity of lived experiences while holding one another accountable. This is key to ensuring that advocacy remains constructive and avoids harmful generalizations or divisive rhetoric.

The Privilege of Care: Accountability and Respect

Care is an essential aspect of living with a disability, but it is important to remember that care is not an entitlement—it is a privilege. The individuals who provide care, whether through formal support roles or personal relationships, dedicate their time and effort to ensuring others' well-being. Advocacy movements should reinforce that this care comes with mutual respect and accountability.

For some, care can seem like a right to be demanded, but we must emphasize the value of gratitude and cooperation in these relationships. The support provided by workers, nurses, or even family members requires trust, respect, and clear boundaries. This dynamic cannot be taken for granted, and it is essential that we promote a culture of respect for those providing care, understanding that without them, many people with disabilities would be unable to live as independently as they do.

The Impact: Reinforcing that care is a privilege rather than a right is key to fostering respectful, reciprocal relationships between people with disabilities and their caregivers. Advocacy should promote mutual understanding and appreciation, ensuring that both sides of the care dynamic are valued.

Avoiding Manipulation in Advocacy: Protecting the Movement’s Integrity

Manipulation is a subtle but significant issue within the disability advocacy space. Some individuals may exploit the movement for personal gain, amplifying divisive narratives or promoting harmful stereotypes. For example, the promotion of self-diagnosis over professional evaluation can lead to misconceptions about disabilities, reinforcing stereotypes that harm the community.

While it’s important for people to seek understanding and validation of their experiences, advocating for professional diagnosis and care ensures that the community is accurately represented and supported. Manipulation through misinformation or exclusion of certain voices weakens the integrity of the advocacy movement and creates unnecessary divisions.

The Impact: Maintaining the integrity of the advocacy movement requires accountability, transparency, and a commitment to accurate representation. Avoiding manipulation ensures that advocacy remains focused on the well-being of the entire community, not just select groups.

Moving Forward: A Unified and Respectful Advocacy Movement

The disability advocacy movement has the potential to create lasting, positive change, but it must first address the challenges that threaten its unity. By dismantling hierarchies that exclude higher-functioning individuals and embracing the diversity of lived experiences—whether they come from people with disabilities, support workers, or caregivers—we can create a more inclusive movement. We must also recognize that work is a valid goal for many, and care is a privilege that requires mutual respect and accountability. By fostering a culture of respect, integrity, and genuine inclusivity, the disability advocacy movement can continue to grow in strength and effectiveness, ensuring that all voices are heard, valued, and supported