“Own the Equinox: Usher Syndrome Awareness Day”

A photo of Eddie Madera illustrating what Usher Syndrome looks like
A photo of Eddie Madera illustrating what Usher Syndrome looks like

My name is Eduardo “eddie” Madera. I am Secretary and Social Media Coordinator for the 501(c)3 advocacy group Deafblind Citizens in Action.  Today being Usher’s Syndrome Awareness day, we at DBCA would like to dedicate this post to all those affected by this condition worldwide. Within DBCA’s deafblind membership, their are currently three of us with Usher’s: Kelvin Crosby, Virginia Maize, and myself.  Here is the short of my Usher’s journey.

I was born profoundly deaf, and eventually I realized my vision was deteriorating at the age of 14 at the deaf school in southern California. I thought I was alone with these symtoms I didn’t know the meaning of, though in actuality two of my close friends from elementary school were enduring similar experiences. One of them  had obvious tunnel vision, stumbling a lot. The other, suffering from hyperopia, began struggling in close-quarters conversational situations like buses and so on. Shamefully, and with typical adolescent malice, I joined the other kids in mocking this friends for the “awkward” distancing measures he took to better apprehend the body posture, facial expressions, and gestures that are the core of American Sign Language (our primary language as Deaf American students).  I especially remember a  bus ride  to Knott’s Berry Farm Soak City in Palm Springs, California, the other students and I engrossed in conversation, and my friend pushing his head back into the window to try to achieve enough distance to see my signs and participate. I mocked him, called him bizarre, and quite naturally he got upset, tried to explain. I learned nothing, though, not then.

So when  the  blind spots began encroaching on my visual field, I was confused, especially as my deaf peers seemed to see each others’ signs perfectly well, even in dark settings, , while I could not. Clarification only came as I eavesdropped – and later joined in – on a conversation between the dorm staff and and my hyperopic friend in which they explained about Usher Syndrome.  I glimpsed a new world, of canes and baseball caps and  injuries to myself and others; it was terrifying.

After many years, I’ve now embraced my deafblind identity and accepted the implications of Usher’s. Rare as statistics say that it is, it’s surprising how many in the Deaf world can identify an acquaintance with Usher’s when I describe the symptoms. Such instant understanding is often absent among the general public, though, which has a very rigid view of blindness and deafblindness that cannot encompass the variability of Usher Syndrome. Thus, I’ve had people ignore me when I ask for directions because they thought I was feigning blindness, masquerading with my cane and sunglasses.

The Deaf world isn’t all understanding and recognition: at my alma mater,  Gallaudet University,  there is a hidden Deafblind community. I met many with Usher in my time there who would not acknowledge the condition and their deafblind identity for fear of exclusion from friends, clubs, and participation in sports. That’s why I am writing this to raise awareness of the importance of early detection of this condition so that they can be better equipped in early life.

This is why the Usher Syndrome Coalition is dedicated to raising awareness about this condition and ultimately fundraising for the scientific research which may lead to the discovery of treatment for this condition. There are three different types of Usher Syndrome: Type one, Type two, and Type three. I have Usher Syndrome Type One. You can learn more pertaining to Usher Syndrome and its three types at: http://www.usher-syndrome.org