I saw a post in my Facebook feed recently that had a picture and a description from somewhere a long way from my home. In the description, I found a clue that revealed I knew one of the men in the picture. Though I’ve not met him in a face-to-face way (yet), I do know him. I found it strange that I could know someone from a random newsfeed post that had been shared around the internet. I know they say, “It’s a small world,” but it isn’t really that small. It got me thinking (which can be scary sometimes); but maybe this time, it might lead to something a little useful – an identity, a place, a suit of clothes that fit.
Identity is something we all try to find, and most of us find it rather quickly. Some of us don’t; or, maybe we do, but it feels like a suit of clothes that don’t quite fit. Fitting in, finding your place, is difficult as you explore who you are, what you like, what you don’t like, what you believe, what you can do, and what you can’t. Once you have figured that out, you usually slide into your place like slipping on a good fitting, comfortable suit of clothes be it a dress, jeans and tee, suit and tie, overalls that feel good, look great on you, and help you do your job well and enjoy life as the true adventure it should be. When you aren’t able to easily find all of those things that are a part of your identity, those clothes you try to do your daily activities in feel like they just don’t fit right on all the parts that they should. Life can be done and even enjoyed, but it isn’t as easy or as comfortable.
Being hard of hearing (then deaf), growing up in a hearing world, I found myself to be one of those in an ill-fitting suit of clothes. I tried various kinds of clothes and sizes. Some were way too big or too small, but I found some that came close. None were perfect. I found ways to figure out what was going on when I couldn’t hear and understand the others at home, work, and play. When I couldn’t figure out what was going on, I learned to often monopolize the conversation, so I would not have to be the one listening. It worked. Sort of. Probably made me look narcissistic though, and annoying at the very least. I got by, but nothing was quite comfortable. Then I lost my sight, too. My options became very limited. Now, there are only a couple of suits that come close to fitting, and they aren’t for socializing. Sigh…
Just where am I going with this? Well, I said I was thinking and that can be scary, right? Bear with me, and maybe we both can get something out of this. As I followed these random twists of thoughts, I remembered my high school sociology classes where we learned about culture. I remember little from those many years ago, but I do remember the definition:
: the beliefs, customs, arts, etc., of a particular society, group, place, or time
: a particular society that has its own beliefs, ways of life, art, etc.
: a way of thinking, behaving, or working that exists in a place or organization (such as a business) (Mrriam-Webster.com)
Much of our identity comes from our community in our culture. The community and culture, at large, works because even as an individual you can find your little niche within. That is if you have total access to it and find enough people like you to slide into the niche to be comfortable. Hard of Hearing and Deaf can find that niche with each other, especially if they learn the common language of access, ASL. Like most cultures, the Deaf world with the capital “D” has beliefs and practices. You almost always need to be a native signer and, though they are a loving, close-knit group that hug a lot and touch otherwise for communication, is avoided. It is all about the visual world. The blind with their hearing mesh extremely well not only with each other, but with the hearing sighted with little modification needed to insure total access. With that total access comes comfort in familiar areas and ease with added help in less familiar areas.
A few times in recent years the question has come up whether there is a DeafBlind culture like there is with Deaf culture. I would say for much of time there hasn’t been because there was no way for a culture to develop by the very nature of being DeafBlind. A DeafBlind person has trouble relating to individuals around them and even less connection with the world at large. Now, in recent years, I have said it was slowly changing with the access of technology.
Technology and the internet are now connecting the relatively small number of DeafBlind individuals in the world. We can now use speech readers and Braille displays to access the world in general and to each other through the internet. It is through the internet that I met David who is in that picture. We have ways to chat, text, email, and even connect with each other and the hearing/sighted world on Facebook and Twitter like most people. We also have Tactile ASL and Face to Face technology in the form of phones and computers with applications, speech readers, and Braille displays to connect in real life to each other and others. As we do this, we are learning our way around our personal corners of the world as well as the virtual world. We are also getting to know each other, too, developing close friendships and new beliefs, ideas, customs, behaviors, art forms, literature.
We have our community now, though it may be a little different than most communities because many of us may never meet face to face, but we do know each and well because we can communicate and touch in so many ways. We also have the beginnings of our own culture as we grow closer together in so many ways forming our niche, and trying on the “clothes” in which we can be comfortable. Even with our individual quirkiness, we have found a group, a society of our own. Like the Deaf and the key connection through ASL and a perspective through the visual world, we DeafBlind have our key connection which is communication through Tactile ASL and/or technology and our perspective of the world through touch.
Now, the clothes I wear can fit in all the right places. I can become comfortable and make a life in this niche. As we grow together even more, we will become even more comfortable and develop our lifestyle. Through my writing up to now, I have shared some of that community and lifestyle’s beginnings as I have found it naturally. In the days to come, let me start introducing you to more and showing you more of what and how we, DeafBlind, are building as our lifestyle, the Pro-tactile way. Pro-tactile is a way of accessing the world communicating and living through touch allowing us to form our identities as DeafBlind. Pro-tactile is the “clothes” that are helping us to feel comfortable, look great, do a job well, and enjoy life as a true adventure.
Video that shows more of that picture and a small aspect of Pro-tactile: