Dignity means seeing the whole person: Why this matters for people with disability

First published online 30 Oct 2023.

Why this study was done

Dignity is a powerful idea—it’s about being treated with respect, value, and humanity. For people with disabilities, dignity is often denied in everyday life, especially in healthcare and public services. While many policies talk about dignity, there’s little research that asks people with disabilities what dignity means to them and how they experience it. This study aimed to:

• Understand how people with disabilities define and experience dignity.
• Explore how dignity is affected by the way society and systems treat people with disabilities.

What the study did

The researchers used an inclusive approach called “extreme citizen science”, where people with disabilities were not just participants—they helped design and lead the research. They collected data through:

• Online surveys with 17 participants.
• Focus groups with 5 participants (some of whom also did the survey).
• Participants shared personal stories about when they felt dignified or undignified, especially in healthcare and public settings.

What the study found

Participants said dignity comes from being seen and treated as a full human being—not just as a “patient” or “disabled person.” This means:

• Being listened to.
• Having control over decisions.
• Being respected for who they are.

Five Key Ways to Support Dignity

1. Acknowledge Personhood

• Treat people with disabilities as individuals with value and rights.
• Don’t ignore or talk over them.

2. Recognise People as Decision-Makers

• Let them make choices about their own lives.
• Don’t assume others (like carers or doctors) know better.

3. Ensure Access to Information

• Provide clear, accessible information so people can make informed decisions.
• Use formats like captions, plain language, or assistive tech.

4. Respect Privacy

• Don’t discuss personal or medical details in public.
• Respect physical and emotional boundaries.

5. Remove Barriers to Accessibility and Inclusion

• Make environments and systems (like transport, healthcare, education) accessible.
• Inclusion isn’t just physical—it’s about feeling welcome and safe.

What Happens When Dignity Is Denied

Participants shared many examples of being treated without dignity, especially in healthcare:

• Being talked about instead of talked to.
• Being ignored or dismissed.
• Facing inaccessible environments or services.
• These experiences led to feelings of shame, frustration, and even avoidance of healthcare.

What this means

Dignity for people with disabilities isn’t just about respect—it’s about being acknowledged as a full human being with rights, agency, and value. That acknowledgement must be built into every interaction, policy, and system.

For Services and Systems:

• Dignity must be built into how services are designed and delivered.
• Co-design with people with disabilities is essential.

For Society:

• Acknowledging personhood should be the foundation of how we treat people with disabilities.
• Dignity isn’t just about being nice—it’s about upholding human rights.

For Research:

• More studies should include people with disabilities as partners, not just subjects.
• Future work should explore how dignity affects health and wellbeing.

This study was conducted by:

Dr. Kelsey Chapman, Angel Dixon OAM, A/Prof. Carolyn Ehrlich, and Prof. Elizabeth Kendall.

To read the full article, visit the journal.

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Disclaimer: The QDRN has utilised generative AI to refine the wording of this plain language summary. All content has been checked for accuracy, appropriate tone and clarity and approved by the author.