SAAVI

Did you know there are professionals called Certified Orientation and Mobility Specialists (COMS)? My friends will tell you that I am known for making up stories, but this is actually a true statement! I can confirm this in three ways: 1) this is my career… I have a Master of Arts degree from Western Michigan University and have passed a national certification exam to become a COMS; 2) I received instruction from a COMS because I was born with a visual impairment; and 3) it’s on the web (typed with a smirk)!

If you go to a web browser and search “What is orientation and mobility?” – you will likely receive a result such as this one from Google. “Orientation and Mobility or O&M is a profession which focuses on instructing individuals who are blind or visually impaired with safe and effective travel through their environment. Individual O&M instructors can work for schools, government agencies or do private contracting for their services.”

            Did you know that during World War II, many U.S. soldiers returned from war blind? Yes, it is true that many people across history have lived with blindness. But for this time period, there were a few men that took the challenge of developing a system to help these individuals regain independence. If you would like to read the story / history of this development, please refer to an article written by Dona Sauerburger, COMS called “O&M Living History -- Where Did Our O&M Techniques Come From?” (http://www.sauerburger.org/dona/omhistory.htm)

            Now that you know a little about orientation and mobility, how does this affect you? Even though blindness is a low incidence disability, I predict you will come across someone in your lifetime. This may be a person you know or a random stranger on the street. This experience will cause some type of reaction. If it is your first encounter, it may strike an emotional chord. You may experience anxiety, fear, or uncertainty about how to interact with them. These feelings are valid; however, let me encourage you to take a deep breath. Remember, these are human beings, not aliens from another planet. After reading this article, I hope you gain an increased knowledge and understanding of how to interact with people who are blind or visually impaired.

            Did you know that not everyone who is labeled “blind” and/or carries a white and red cane is totally blind? Many people with sight loss still have some remaining vision. In some circumstances this remaining vision may be reliable. Other times, it may not. Many factors affect vision. Some examples are glare, darkness, color contrast, whether or not someone has blurry or blind spots. It also depends on how the brain interprets visual information.  

If you come across someone who has limited or no sight, you may notice them carrying a cane. Orientation and mobility instructors highly recommend this. I support the idea as a professional and as a cane user. Having my cane in front of my body gives me information about what is low or on the ground. It allows me to hold my head upright. This is important for my posture / health as well as my hearing. If I use my cane appropriately, it will detect changes in terrain and/or elevation. I also use my cane as a nonverbal communication tool. If I need assistance with reading something or locating an object / location, it’s not necessary to give you a long medical history of why glasses won’t fix my sight.

For many years, I navigated without a cane. I have some functional vision. My brain learned to compensate and in some situations, I was a good at guessing my way through. As I slowly began using my cane, I became more confident in moving through space. My pace increased. I didn’t realize I walked with my head down. After this was brought to my attention, I realized it was probably because I fell and busted my nose as a child. It happened as I walked through a parking lot and didn’t see a cement block. I still have trouble seeing those blocks at night or when the color is the same as the ground. But now… I have a cane and my nose is injury free!

As I use my cane in public, I notice many different reactions. Unfortunately, some people react as if the cane is a snake or a staff that will smite them. I have seen this as I teach others as well. The only cane users you should watch out for are the kids, and those who are young at heart, that pretend their cane is a light saber or sword. The red and white tape is designed to be reflective for safety purposes, but when you combine that with light up toys… the possibilities and power seem endless!

What should I do when I encounter someone who is using a cane? Great question! If you see a cane coming, communicate. Feel free to simply say, “hello”. If you prefer not to use words, make a sound. Give a fake cough or clear your throat. This gives the person an audible clue that you are near. If they continue to walk towards you, don’t be afraid of their cane touching you. The idea is for it to touch you before they do. Once they locate where you are, they can maneuver around you.

Some people genuinely try to help by scampering out of the way. If you continually move your body to avoid the cane, it could end in a disastrous dance. This is especially true for the people who constantly move and never make a sound. If I sense you are there, but I don’t know what you are doing… I can’t make an informed decision on how to successfully navigate through the situation.

If you attempt assistance by talking or standing still, the person who is blind or visually impaired has the responsibility of moving on or asking for your help. Again, try to relax. Don’t make it more complicated than it needs to be. If you can survive being bumped in a holiday shopping spree or a crowded concert, you can survive a slight bump from a cane or someone who can’t see.

            If you ask someone about their sight loss, don’t be offended if they don’t answer completely. Sometimes it is hard to describe. If you are a stranger, don’t expect them to give out their personal information. If you are curious about life with sight loss, please contact your local blindness agency or visit websites that give examples of it. As you view simulation resources, please remember everyone is different. You will get a general idea of different conditions, but will never know exactly how someone else sees. You can begin your research at http://www.perkins.org/resources/scout/vision-and-blindness/simulation-of-vision.html.

            There are so many things that could be said about the topic of orientation and mobility as well as my own journey as a person living with a visual impairment. Since my task was to write an article, not a novel, I will end with the most common question I encounter as I am out exploring the world. “How do you know when it is safe to cross the street?” I will be honest. Sometimes it is hard to refrain from creating wild stories. The truth is I use a combination of knowledge of traffic patterns / rules and listening skills to analyze what traffic is doing. Please understand, this is a skill set that is learned and practiced under supervision. Do not try it without consulting a professional first. Many O&M instructors are more than willing to talk about the techniques we teach / the techniques people use to live independent lives. I encourage you to keep learning and share this with others!

On one hand, I was thrilled to have a platform to express my feelings and experience about the adjustment to blindness.  I thought this would be a great beginning to the book I have always intended to write.  On the other hand, I was concerned about how to explore such a unique and complex experience in a brief article.  So please take this as my sincere attempt to offer support to those who are somehow touched by this experience of blindness.  Whether you yourself have lost vision or know someone having this experience I want to offer my empathy, knowledge, support, well wishes, and hope.  I have been in this game for a long time and would have loved nothing more than a role model, book or article to normalize the experience I had when I was first adjusting to blindness.  So for what it is worth, here are my thoughts.  I hope you will take them as the authentic message that they are meant to be. 

                Whether someone wakes up with a shocking, sudden vision loss or slowly loses vision over a longer period, there are about a million feelings and emotions that you may possibly go through.  One million may not be an exact number, but it best describes how overwhelming the experience can feel.  As you face the reality of vision loss, it is normal to feel just about anything.  Some people feel mad, while others experience depression.  You might feel angry with God, yourself, or your loved ones.  It does not have to make sense, but it is important to move through whatever emotions you are experiencing.  I have a Master’s degree in Marriage and Family Counseling and had a wonderfully educational internship working with grief at San Diego Hospice.  With this experience, I can wholeheartedly state becoming blind is an experience that warrants moving through the grieving process.  

                There is much more to grief than we typically acknowledge in our culture.  Grief is not just about death.  It is about the loss of something, someone, a dream, a desire, a relationship that we loved.  Becoming blind often represents for people the loss of identity, independence, dreams, normalcy, freedom and probably many other things.  This is extremely normal.  If you are used to experiencing the world in a certain way and then it changes, of course you are going to grieve that loss.  Especially because in our culture we typically do not acknowledge disability, and certainly not blindness, in any sort of positive manner.  Can you think of positive role models in media or the world at large who are exhibiting a desirable, positive image of living as a blind or visually impaired (vi) person?  Frankly, I find it hard to think of more than Helen Keller and the character on the new show “Growing Up Fisher” which I have only seen once but seems rather funny.  Helen Keller is a wonderful influence on the world and has an inspiring story, but she died in 1968, and the character on the new show, while apparently based on a real person, is too new to truly make a determination about. 

                Aside from the lack of role models, we also face the reality that our culture actively fears blindness.  I have been visually impaired since the age of three.  I cannot tell you the number of people who have said to me during my lifetime, “God, I just cannot imagine being blind.  I would just have to kill myself,”  or “…I would never leave my house….”  Or “ I just don’t know how you can live like that….”.   Wow, that is certainly a chorus of support for living with blindness.  After years and hundreds of these comments, I have decided that people are not mean, hateful or intentionally unsupportive  (at least not usually, anyway). They are just unaware and uneducated on the issue of blindness.  I am uneducated on many areas in the universe so I cannot truly judge other people because they do not understand my particular life circumstance.  I would hate for someone to judge me because I do not understand Polygamy, atheism, people who wear those toe socks as though they are shoes, cat people, or people who have 19 children and then have a reality show about it.  The point is that your adjustment cannot be based on the acceptance of others.  You have to figure out who you are now.  You need to incorporate blindness into your life in whatever way makes sense for you.  Eventually, once you are comfortable with this, you will naturally serve as an example to your family, friends, culture and world but this should really not be the primary concern.. 

                If I were reading this, I would think…” well then what the hell should be the major concern?”  Because this is my own thought, I of course think it is an excellent question.  In my humble opinion as both a member of the blind club since 1981 and a blindness rehabilitation professional, I think the major concern should be figuring out how blindness fits into your life and how to keep it from being a barrier.  How do you make blindness work for you?  You might be thinking, “blindness does not work for me, that is the problem!”  This is a fair point.  However, the hard truth is this, if you are blind or going blind, then the opportunity to choose blindness off the menu of awesome life experiences was not optional.  Instead, someone or something (whatever you believe) decided for you that blindness is in the mix at this point and it is up to you to figure out how to accept it and then hopefully (eventually) embrace it. Let me clarify, when I say embrace, I am not meaning you need to wear a “hug me I’m blind” t-shirt or inspire a Lifetime movie about how it is awesome to be blind, but rather truly accept it as a part of yourself.  (Although if you happen to see me in a movie on Lifetime someday, featuring my "Hug me, I'm blind" T-shirt, you will know I was serious about embracing it)  Ok, in all seriousness I believe that embracing blindness means that I neither hate this aspect of myself nor do I define myself by it.  I accept blindness as a characteristic much like being a woman, a counselor, blonde and loquacious.  Countless characteristics and experiences will do their part to shape who we become in life.  I feel empowered when I realize that it is up to me to decide exactly what I want that shape to look like.  

                I want to recognize that everyone deals with this experience differently.  I am speaking from my own experience of adjusting to blindness as well as the many clients I have worked with at the Southern Arizona Association for the Visually Impaired over the last two years who have shared their adjustment process with me.  I want to acknowledge that there are certainly people who adjust more quickly and perhaps do not have the same need for grieving the loss as others.  This is perfectly fine and normal.  Again, like any life experience we are going to move through it in the best way that we know how.  We will do what we need to do in order to move forward. I had the opportunity to work with a great man who had lost vision unexpectedly several years ago.  When I asked him about his adjustment to blindness, he stated “This is just the way life is now so I figured, ok I am blind and moved on..”  I appreciate his view because I felt it was genuine and simply the way he experienced this change in his life. 

                I realize I am getting a bit liberal with the (perhaps) cliché therapist attitude of “ all feelings are normal” and “you are perfectly fine the way you are” sentiment, so let’s do a reality check here.  While adjusting to this loss may bring up many emotions and might be a long journey for some people, you do not have the right to take these feelings out on others.  While you may want to hate the world for a while, I do not suggest treating strangers rudely just because you are angry.  It is acceptable to throw a pity party for a short time, but then you have to get up and figure out what to do with your life next.  Hopefully, you will have family and/or friends who can help you pull out of this depressive phase if you should find yourself in one.  However, for those who do not have these immediate supports, you can call your doctor, your local Vocational Rehabilitation office or blindness agency such as SAAVI to ask for resources.  There are amazing options that exist today to help a person get back into their existing career or obtain training and tools to support you in beginning a new career.  Short of certain visual jobs including flying planes, driving cars or painting the Mona Lisa on a pin head, there are few things that blindness should stop you from doing.  Please do not misunderstand.  Being blind does not automatically give you any special powers or allow you to finally become the superhero that you have always aspired to be, but rather does not need to be a barrier to you living a successful and happy life.  

                As I stated, I have been visually impaired since the age of three so this is old news for me.  However, I have to acknowledge that my transition to blindness has been a life long journey.  I had a most ideal childhood, but of course there were the kids who made fun of me on the playground because God forbid, I was different than them.  There were also the occasional guys who shied away from dating me because dating a blind chick was new and frightening territory.  And of course there have been countless days when I just felt frustrated about being visually impaired because it was a particularly hard day and maybe my eyes were tired.  Maybe I had walked awkwardly off a curb that I had not noticed or unintentionally missed a stranger’s friendly attempt to wave at me.  It is certainly valid to feel bothered by these incidents, but if this is really the worst thing happening in my life, that is pretty damn good. 

                My point is that it is all about attitude.  Ok, so my friends all began driving at the age of 16 and I was angry this was not a rite of passage that I was meant to experience.  That is a bummer as a teenager, but it is sure convenient as a twenty five year old when you never have to be the designated driver.  It certainly is an incredible challenge to live in Phoenix, with minimal public transportation options, and not drive.  However, it is pretty sweet to have twice weekly personal trainer sessions that I pay for with my "would be" car payment/ insurance money.  It absolutely horrified me as a nineteen year old college freshman to begin using a cane on the gorgeous campus of Arizona State University.  But now as a thirty five year old adult, it proves to be an asset to stand out from the crowd and often be remembered by strangers because I am not just another pretty blonde, but the pretty blonde who also happens to be blind.  At this point in my life and adjustment, I am grateful for being different and having unique life experiences.  I know without question that if I were not blind, I would be a different person (and quite possibly one that I would not like nearly as much) because I would have missed out on so many wonderful life lessons.  I would not know the same people that I have met due to my status in the blind/ vi club.  In fact, I probably would never have met my amazing husband, since I met him through a friend that I knew through my connection with a blind agency.  The point is that life deals you cards and you have the opportunity to play the hand you are dealt in the most graceful, successful way possible. When I walk down the street with my fabulous high heels, undoubtedly trendy outfit, rocking my red and white cane I feel awesome about who I am.  After all, it is not everyone who can describe themselves as blonde, blind and beautiful.