Among the COVID-19 pandemic’s many transformations of daily life, one of the most striking has been the sight of faces, both familiar and unfamiliar, suddenly covered by masks.

For the facial difference community, the very real psychosocial impact of wearing a mask is a touchpoint of serious debate.

For some of us with a facial difference, having to cover up feels like the erasure of our progress as a community. We have fought for so many years to be seen and accepted exactly as we are. Wearing a mask can feel like we are once again hiding ourselves to appease others.

For others among us, wearing a mask that covers up our visible differences has been a welcome reprieve from the staring, whispers, and questions that we encounter on a regular basis. In a mask, we can go out anonymously, free from negative assumptions and judgement.

These are critical pieces to the discussion which need to be considered alongside the more pressing concern for the physical health of the facial difference community and our family members.

Both of us have conditions that prevent us from wearing masks safely. Treacher Collins Syndrome affects bone development, resulting in a small bottom jaw and underdevelopment of the ears. Most face masks, including homemade ones, depend on ear loops or elastics that are simply impossible to wear. Lymphatic malformations on the face and many craniofacial conditions prevent standard masks from fitting properly. Some of us have facial conditions that affect our upper airways, and a mask can dangerously impair our breathing. The need to wear a mask becomes all the more critical for those of us with conditions or who take medicines which leave us immunosuppressed and immunocompromised.

Many in our community should be wearing masks for our health and well-being, but currently there is simply no safe, reliable way to do so. We are left to improvise homemade solutions or risk going mask-free, which begs the question - how do we abide by public health recommendations and not increase the risk of transmission to ourselves and others if we cannot access masks that can properly accommodate faces with different shapes and structures?

As we recognize Face Equality Week May 17-24, we are mindful that this international movement exists because the goal of true face equality is an ongoing one. AboutFace, the only organization that supports people across Canada of all ages with any type facial difference, is working alongside our global partners to campaign for a better world for people with visible differences.

As we navigate the COVID-19 crisis, the facial difference community has valuable insight regarding the importance of face masks and the need to ensure they are accessible and useable by diverse populations. For us, equality in this case would be an opportunity to present our experiences and be considered – like all those with body differences – respectfully and uniquely rather than through a ‘one-size-fits-all’ brute force approach. When the time comes for reflection and evaluation of the response to COVID-19, our needs must be considered alongside others with unique concerns related to face masks.

Our goal in the facial difference community is to be treated fairly, equally, and with respect. With face masks or without.

Kariym Joachim, President and Chairperson, AboutFace, Toronto, Ontario 

Alim Somji, Board Director, AboutFace, Edmonton, Alberta