Opening Eyes and Opening Doors

Imagine yourself walking in bright tropical sunlight from your car into a Doctor’s laser clinic, and leaving a short time later surrounded by “blurry mist.” This occurred because of someone else’s self-admitted “stupid mistake” in not referring me to a qualified specialist with adequate equipment in the Netherlands or the United States.

This happened in Curaçao which lies about 35 miles off the northern coast of Venezuela in the southern Caribbean. It has been a part of the Netherlands Antilles, or what was formerly called the Dutch West Indies. I was born there, and grew up in England and the Netherlands.

I returned to the island to complete my university studies, which, needless to say, were interrupted by this devastating turn of events. After going through the various phases of shock, fear, grieving and acceptance, I was determined not to crawl away and hide in a corner. I did, however, come face to face with issues of mobility and orientation that were somewhat unique and compounded by having lost the majority of my eyesight in my late twenties. I also lived on a tropical island where the living and treatment infrastructure differed greatly from other countries.

As part of trying to achieve some orientation in a new life that felt very disoriented, the Blind Institute gave me a cane. Unfortunately the cane was not successful because, as people at The Seeing Eye later told me, it was too short. Subsequently, the Blind Institute employed a mobility facilitator who informed me about the possibilities a guide dog could offer.

Curaçao is a part of the Kingdom of the Netherlands, so I initially tried to apply for a guide dog from Holland. Unfortunately this was disallowed because I wasn’t insured in Holland. I then learned about the wonderful work of The Seeing Eye Incorporated in Morristown, New Jersey, USA in assisting the vision impaired and blind new opportunities for personal growth, increased mobility and a better quality of life.

After successfully completing the interview process, I eventually travelled to Morristown, and returned home with my guide dog Wagner. It was another life-changing experience. You can read more details of this experience in “The Seeing Eye and Beyond” in the Articles section of my website: www.LauraAndWagner.com

I believe the issues of orientation and mobility are quite different for someone born blind than they are for someone who loses their sight later in life. For those in the former category, please forgive any presumptions that you don’t feel are accurate.

I think when you are blind from birth, or lose your sight as a child, you become more psychologically conditioned to initially accept being reliant on others with O&M until you become more independent. It is more difficult being confronted with a new reality of sensory or mobility loss after living a life of independence and self-reliance.

In my case, I suddenly became completely dependent on others around me for almost everything I had previously been able to do myself. Over time, I regained some of my former independence once I was able to orient myself to my immediate surroundings.

You tend to build a cocoon of familiarity around yourself as you try to adapt to the shifting “balance control” in your brain that brings more focus to the sounds, scents and tactile feelings of your new world, that supplements the vision loss. The cocoon in this case was my house. Within that cocoon, the familiarity was gradually achieved through repetition and order. Outside the cocoon was another matter, especially in a place where order can be difficult to achieve, regardless of repetition. I became completely dependent on loved ones and friends, until more options opened up with the arrival of Wagner that enabled me to leave the house when I wanted to.

The complex urban infrastructure of Morristown, was in stark contrast to the island of Curaçao. When I brought Wagner home to Curaçao, I lived in a house in one of the nicest neighborhoods on the island that actually had sidewalks. I was able to build an expanding walking routine that included a vigorous trek through hills surrounding natural salt lakes.

However, outside of our neighbourhood, Wagner and I were not greeted with open arms. There was a lack of sidewalks in a lot of areas, and it wasn’t dog friendly. Dogs were either guard dogs, or feral dogs, with some being quite dangerous when encountered on walks. It became quite an adjustment for the two of us. I would try to travel with Wagner into the city to work on pedestrian crossings, sidewalks and traffic lights. Sometimes I felt island life was too “lazy’ for a dog as intelligent and highly trained as Wagner. I would often think “beam me up Scotty, is there any intelligent life around here?” But Wagner did love the freedom of running along the beach and splashing in the warm Caribbean Sea.

While the island itself is very beautiful, and most of the people are very friendly, it is a lagging culture when it comes to how people with an impairment or disability are treated. Sometimes people with disabilities are treated in a hostile way. There is a culture of shame within families where a member has a disability. I recently learned about a 12 year old blind boy who had never been to school or travelled outside his house. Another woman told me of her mother feeling ashamed of her vision loss late in life because it made her dependent on her loved ones. With this particular feeling I could relate.

If an attempt is made to reassert some independence through the use of a guide or assistance dog, you have to fight for your rights and freedom because, in many cases, you are not allowed to enter certain places. In some cases, you also have to overcome very narrow-minded and discriminatory perceptions, including shopkeepers shouting at you to “get out!” These attitudes are quite ironic, in a place that is very sensitive about the former discriminatory treatment of slaves.

Something had to change. After a friend designed a website for me as an online base for a documentary he wanted to make about my experiences, I felt we could take it to the next level. This resulted in the development of ‘The Laura And Wagner Foundation’ to help liberate disabled people from that “curtain of shame.” The Foundation would assist disabled people to gain the tools that helped me to work toward the goals I had before I lost my sight. I was able to access a computer with text reading/writing software, as well as a Daisy player CD reader which enabled me to continue my studies in psychology.

I wanted the Foundation to be an advocate for people who don’t see, hear or walk as well as the rest of the community. The Foundation’s goals include assisting people with a disability to achieve increased mobility through the use of a guide dog or assistance dog, and leading a campaign for an access law that would allow anyone who uses one of these service animals to access all environments. I also want the Foundation to be a resource for people who lose their vision later in life whose unique needs and challenges are very different from those congenitally blind. Initially, the established organisation for the blind on the island was more equipped to help the congenitally blind, and was overwhelmed and ineffective in helping those, like me, who lost their vision later in life. The usual experience of sitting with other people with the same disability in well-meant communal and social activities isn’t always comfortable for someone who’s lived a life of great independence and self-reliance.

Another goal of the Foundation is to achieve a 555 helpline information directory for people with disabilities on the island. Conveniently, the ‘5’ on any keypad has an orienting raised dot for blind and vision impaired people.

The Foundation is also producing a global television documentary that will chronicle O&M issues around the world, such as the story of Paralympic gold-medalist Ping Yali who encountered access issues with China’s first guide dog, “Lucky” in Beijing. The documentary will also feature Dan Kish from the US who, although blind from birth, finished his psychology degree. Dan is also teaching echolocation by tongue clicking that enables vision impaired people to orient and move through surrounding spaces safely and independently. Dan developed this technique as a boy and I find this astonishing.

The documentary will also include the issue of Muslim cab drivers refusing passengers with guide dogs, and the way church and state are colliding in this challenge to human rights. Further, the documentary will explore the issues of integrating new technologies such as GPS tracking and talking devices that open up a new world of possibilities for guide dog users. As more guide dogs and assistance dogs are trained in Curaçao, slowly we are seeing progress on the island that will make life easier for people with disabilities. For example, if Wagner and I are refused entry to any environment, then strangers will now step forward and try to help, explaining that Wagner is a specially trained dog. The awareness is improving.

Wagner provides a new level of dignity, self-reliance and freedom. He’s also great ambassador for The Seeing Eye because he’s a very friendly dog and people are always curious about him. Often people come by and ask questions or have their photograph taken with him. Wagner is much more beneficial than a cane.

The cane seems too symbolic, identifying you as “that poor blind person”, as many have the tendency to presume.

It takes time, perseverance and patience. But gradually the momentum is building, more eyes and more doors are opening and we’re meeting more people who are taking the time to see and respect the real person behind the disability. I’m still the same Laura I was before my vision was impaired. You’ll know that too, if you take the time to see.