Am I Disabled Enough?
I get asked a lot if I have a disability. The short answer is no. This is why I am the founder of this business.
I am not sure if other founders get asked this question. I understand asking someone why they chose their life purpose, but in this case I am being questioned because some believe I am appropriating the disability experience as my own. I am not. I have a genetic condition called Asphyxiating Thoracic Dystrophy, also known as Jeune Syndrome. My case is so mild that by law, I do not have a disability. That is not the case for other people who have this condition.
MIGA Swimwear starts from recognizing that my ableist views, which I didn’t question until I was in my mid-twenties, hurt my self-esteem and my perceptions of self-worth. This experience is what I have tapped into to create this business. Our brand is not for people who ascribe to ableist beliefs. Our brand is for those that are self-aware enough to understand that we grow up with biases towards having a disability, for those who believe that the world is unfairly inaccessible to this community (15% of the world population), and for those who are committed to denounce this and be allies to this community, whether they have a disability or not. Ultimately, it is those people who understand that by learning more about the disability experience we can bring about change, making this world a more fair and tolerant place.
In the American with Disabilities Act, a person that cannot complete one or more major life activities such as walking or taking care of one’s self is considered as having a disability. Getting dressed is an integral part of the human experience. Just like underwear has proven to be fundamental in identity-affirming for the transgender community, swimwear can provide body-acceptance in the disability community. We hear from some of our followers that even though they live close to the ocean they don’t go to the beach, just talking themselves into doing this activity is exhausting in itself, because they rarely feel welcomed, so they just end up doing something else. Swimwear is a category that society has attached so many rules to (i.e. “the bikini body” or wearing only one-pieces after a certain age) that with the creation of the brand we are dictating that differently abled bodies are swimwear bodies too and more importantly, that this community deserves the healing properties of being close to a body of water.
Belonging is a fundamental need of the human condition. Because of the disfigurement I have on my feet, I look different from my family and up until some years ago, I had never seen anyone with feet like mine. Thus, in 2016 I set out to create a community through our brand so that no one else would feel ashamed or isolated because of their disfigurement. In 2018, however, I realized that I clearly needed to revise my language and once again check my ableism, focusing on disfigurement meant focusing only on the physical differences brought about by my genetic condition.
So in 2019, we expanded our brand messaging to include disabilities and chronic illnesses. It is at this point when we start getting a lot of questions about whether I have a disability or not, “just how disabled are you?”. This begs the question, why does it matter whether I have a disability or not? Everyone should care about disability. After all, 1 out of 4 of 20-year-olds today will become disabled before reaching retirement age. Assuming that you should only care about or create an adaptive business because you have experience with disability is not only wrong, it is ableist.
Focusing on the disability community also became tricky because the disability experience is so broad that we often get stuck comparing traumas. And this, to me, is the biggest threat to this community. Instead of discrediting each other, because someone has had it worse than others, let’s focus on what matters, which is contesting ableism so that we can make this world a more accessible and inclusive place.