Visible disabilities: Why disclosure should be a choice

A disability may be visible, or otherwise noticeable, without everything about it being known. Someone’s diagnosis, history, everyday experiences and support needs remain personal information.

The difficulty is that once a disability is noticed, other people, including friends, family members, health professionals and strangers, may assume there is nothing left to keep private, or that asking for an explanation is harmless. A person may be asked what happened, questioned about their needs or expected to correct other people’s assumptions. In some situations, they may also have to share personal information to access support.

Disability disclosure is often discussed in relation to conditions that other people cannot immediately see. However, recent research by Bogart and colleagues shows that people with observable disabilities also make complex decisions about what to explain, how much to share, when and with whom.

What does disclosure mean for someone with a visible disability?

In this context, disclosure does not usually mean revealing that a disability or difference exists; that may already be apparent. Instead, it refers to the additional information a person may choose to share, such as its cause or nature, how it affects them, and any access or support needs they may have (Bogart et al., 2024; Bogart et al., 2026).

This is why disclosure is not necessarily a single decision. Someone with facial palsy, for example, might discuss its impact with a healthcare professional, explain an access need at work, briefly correct another person’s assumption or choose not to answer a stranger’s question. These are not inconsistent choices: what someone wants to share may change depending on who they are speaking to, the purpose of the conversation, and whether they feel they have a genuine choice.

The same decisions can arise for people with other visible differences and observable disabilities. What is noticeable may vary, but the underlying distinction remains: others may notice something about a person without knowing what it means or being entitled to an explanation.

What research tells us about disability disclosure

This range of disclosure decisions was explored in a study involving 16 adults with different facial differences. Participants described autonomous approaches, in which they deliberately chose whether and how to explain their facial difference, as well as situations in which disclosure (or nondisclosure) felt forced or took place without their permission (Bogart et al., 2024).

These patterns were then examined in a survey of 288 adults with 33 different types of facial difference. On average, participants reported disclosing to 59% of the people they knew. Participants most often reported and recommended either choosing carefully who to tell or sharing information more openly (Bogart et al., 2023).

In this study, people who felt they had chosen to talk openly about their facial difference tended to report better wellbeing than those who felt obliged to explain or chose not to disclose openly. However, this does not mean that disclosure caused these outcomes or that sharing more is always better.

These studies do not tell people whether they should explain their condition. Instead, they suggest that what matters is whether people feel able to choose what to share and remain in control of that decision.

When disclosure doesn't feel like a choice

A 2026 study extended this research beyond facial difference to include a wider range of observable disabilities. Bogart and colleagues interviewed 25 adults, including people with mobility disabilities, blindness and deafness (Bogart et al., 2026).

Participants’ decisions about disclosure were shaped not only by personal preference, but also by the setting, their access needs, how noticeable their disability was and other aspects of their identity. Some felt they had to disclose personal information to access spaces, services or support, while others felt pressured to explain because of intrusive questions.

When disclosure felt chosen, participants described more positive experiences, such as feeling capable and experiencing a sense of belonging. When it felt forced, they described distress. As the study was based on interviews, it cannot establish whether disclosure directly caused these feelings. It does, however, highlight how environments and interactions can protect (or take away) a person’s control over what they share.

How accessibility can protect privacy

The study shows that disclosure is not always a completely free choice. If someone has to explain their disability to enter a building, attend a meeting, use a service or receive support, the environment itself is creating pressure to share personal information.

The authors therefore highlight the importance of universal design: planning spaces, services and policies to be accessible from the outset, rather than waiting for someone to disclose a disability and request a change. Individual adjustments may still be needed, but more accessible systems can reduce the number of situations in which people have to share private information simply to overcome an avoidable barrier (Bogart et al., 2026).

How to respect someone's privacy and boundaries

Accessibility is partly about how spaces and services are designed, but choice can also be protected (or taken away) within ordinary conversations.

In my clinical work with people affected by facial palsy and visible difference, I am often struck by how much effort can go into managing other people’s attention, questions and assumptions. For some, these experiences may also affect their self-esteem and confidence. Talking openly can sometimes bring connection, understanding or relief. At other times, the same conversation may feel exposing, repetitive or intrusive.

Choosing not to explain can also be a deliberate decision, rather than necessarily a form of avoidance.

It may therefore be helpful to pause and ask:

• Has the person chosen to share this?
• Do they feel able to decline the question or set a boundary?
• Is the environment making disclosure necessary?
• Am I responding to what the person has said, or to my own curiosity or assumptions?

If managing other people's questions or assumptions is affecting your emotional wellbeing, talking with a counsellor may offer space to explore your experiences, boundaries and choices at your own pace.

Being noticed is not the same as having chosen to be known. A respectful response leaves control over the story with the person whose story it is.

References

Bogart, K. R., Bryson, B. A., & Harcourt, D. (2023). Disclosing the obvious: Psychosocial implications of (not) explaining facial differences. Body Image, 46, 91–102. 

Bogart, K. R., Bryson, B. A., Plackowski, E. F., & Sharratt, N. D. (2024). “The elephant in the room”: Disclosing facial differences. Stigma and Health, 9(3), 379–388. 

Bogart, K. R., Krauter, M. A., Cipollina, R., Wang, K., Sykes, M. M., Garrison, S. M., & Harcourt, D. (2026). “It’s harder to set boundaries when it’s so obvious”: Disclosing observable disabilities. Stigma and Health. Advance online publication.