Disclosing the Obvious: Explaining Facial Differences

Source: Same But Different CIC / Used with permission

People with a concealable stigmatized identity—like having a mental health condition or being LGBTQ+—face a number of costs and benefits when deciding when and if to disclose. Recent research illuminates that people with very visible stigmatized identities like facial differences or disfigurements also contend with “disclosing the obvious.”

Those with more apparent stigma—as is the case with many facial differences, like burns or facial paralysis—often do not have the option to conceal. Instead, people with facial differences are frequently targets of unwanted attention, stares, or questions about their facial difference. They almost constantly face decisions about whether or not to explain their appearance to others.

In a previous study, we interviewed 16 people with facial differences about their decisions to disclose or not. From these interviews, we developed the following taxonomy of disclosure approaches.

1. Compelled (Non)Disclosure

Feeling forced by others or the situation to disclose or not disclose.

• Forced disclosure: Feeling forced to disclose or answer questions.
• Forced nondisclosure: Other people urging you not to disclose or to conceal the facial difference.
• Unauthorized disclosure: Other people disclosing the facial difference against your wishes.

2. Autonomous Nondisclosure

Choosing not to disclose.

• Avoidance: Avoiding situations where the facial difference could be noticed.
• Concealment: Trying to conceal the facial difference.
• False disclosure: Giving a fabricated explanation about the cause of the facial difference.
• Selective disclosure: Choosing to disclose to certain people but not to others.

3. Autonomous Disclosure

Choosing to disclose openly.

• Indiscriminate disclosure: Being open to telling anyone about the facial difference and answering questions.
• Broadcasting: Being open to telling anyone about the facial difference with the goal of education and advocacy

Disclosure is Common

Which disclosure approaches are most common, and which are associated with better real-world outcomes? We conducted the first large-scale, international study to answer these questions. In a new study published last month, we surveyed 288 people with 33 different types of facial differences.

We found that, overall, participants disclosed to 59 percent of the people they knew. Selective and indiscriminate disclosure were the most frequently used and recommended approaches. In general, we found that autonomous disclosure, rather than opting not to disclose or feeling forced to, was associated with more positive outcomes, including lower depression, anxiety, and stigma, as well as higher self-esteem, job satisfaction, and confidence in relationships.

More than half of participants disclosed their facial difference on the job. Most did so once they had been working there for a while, but it was also common to disclose during an interview. Being able to choose whether or not to disclose, rather than feeling forced, was associated with better job satisfaction.

The overwhelming majority of participants disclosed to their romantic partner, and most did so near the start of the relationship. Again, feeling like they had a choice about disclosing was associated with better confidence in their relationship.

Open Disclosure is Healthy

Autonomous disclosure was associated with positive mental health, professional, and romantic outcomes, and was recommended by people with facial differences. Openly disclosing can be a way to take control of a situation to preempt confusion or misunderstanding.

At a broader societal level, disclosing in a frank and open manner can reduce stigma by educating others and subverting taboos that facial difference is shameful to discuss.

The Paradox of Disclosure

By definition, compelled disclosure is outside of the control of people with facial differences, but our findings show it should be avoided. This creates a paradox: People with facial differences are “forced” to disclose in order to preempt being compelled by others to disclose. Instead of placing the responsibility on people with facial differences, stigma must be reduced at a societal level.

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While this study focused on facial differences, findings likely relate to the experiences of people with a variety of visible disabilities, such as those who have amputations, use wheelchairs, have a service dog, etc. Disclosure of visible disabilities has also been understudied, yet people with visible disabilities frequently report being asked intrusive questions about what caused their disability, why they are in a wheelchair, etc., and likely face similar decisions on a daily basis.

Organizations like Face Equality International and Disability is Diversity are working to reduce stigma and ableism through campaigns to improve facial difference and disability representation in communities and in the media. Representation and awareness means that visible differences will no longer be taboo or novel, reducing the demand for disclosure, and making it easier for people with visible differences if they do decide to disclose.

In the meantime, a practical approach to this paradox is for people with visible differences to build disclosure confidence. People with facial differences can use information from this study to learn about the most common and recommended disclosure approaches which can help them make an educated decision about whether to explain their condition. So the person with the facial difference feels prepared if they would like to disclose, they could keep in mind a few simple sentences to explain a facial difference, With practice, disclosure gets easier.

Do our findings mean people should disclose to every stranger who does a double take or asks a prying question? Absolutely not. Disclosure is a very personal and situation-dependent decision. Our results do suggest that explaining to others who may play an important role in one's life, like a potential romantic partner or employer, is common and related to positive outcomes.

For disclosure advice from people with facial differences, check out this post.