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Keeping It Open and Honest: My Take on Vision Loss

man looking out at water
Photo by Sam Carter on Unsplash
Man Looking Out to Sea

By Bill Boules 

I first want to say how much of an honor it is to be writing this post for the APH ConnectCenter. The American Printing House for the Blind (APH) has been with me throughout my life providing support for the things I have needed most. Every time I opened a book, whether large print or braille, I found the name of this amazing organization as the first thing inside. It is really important for me to acknowledge the hard work and dedication of APH for over 150 years. I appreciate, love, and respect each of the wonderful people at APH for their fantastic contributions to making people like me successful. 

APH first showed me I was different. Large print books are just that, they are large and different looking than the books that sighted students at my public school were using. The differences were obvious and in your face, literally. I had to put the book right up to my face to be able to read it. Kids took notice. I was treated very differently. 

Just Wanting to Fit In 

Being different in a world where those differences are routinely pointed out tends to break a person down emotionally. The feeling is that you just want to be a person that fits in. It’s not about being better or more special than anyone. Very often it’s about wanting to be a part of the crowd. Unfortunately, without meaning to, members of the crowd can make statements and form opinions about you that do not allow you to fit in comfortably. Over time, the comments that you hear from people convince you that aiming low is probably the best solution for you. Feelings of inadequacy set in and it is very difficult to recover. 

Very often negative comments come from your own support system. Friends, colleagues and even family members make statements about your abilities without realizing their impact. After all, if the people that have been around you for several years or even a lifetime perceive you to be inadequate, then it is reasonable to believe that you might be. There have been many times that a person has caused me to feel very negatively about myself without realizing they have done so.  People who have been around me for decades attempt to do very basic things for me, because they are trying to make it easy. Again, not realizing the impact of their actions.  

As a professional in the field of vision loss, I witness these types of actions and commentary from parents of blind children and family members of adults experiencing vision loss.  Know that members of our support system are not generally intending to cause harm. The help that they attempt to provide is almost always out of love. Most people are not educated about vision loss and they don’t deal with it unless they absolutely have to do so. It can take some friends and family a long while to get adjusted. We have to first acknowledge that is an issue, so we can begin to deal with it. At the risk of generating a lot of heat from my own community, I feel I need to call for patience and understanding. It is important to give people a chance to learn how to help. 

What Has Helped Me 

  • The first thing is being around people that are experiencing the same challenges as I am. Support groups are important. They allow people to become comfortable in their own skin. It’s important to bounce how one deals with challenges off of others who have faced similar challenges. It is equally important to witness people modeling successful ways of overcoming challenges. Groups like these have helped me build confidence in my own abilities. I have established life-long friendships and a support system that has allowed me to competently help others.    
  • Another thing that has been a great help to me is when I encounter people who truly believe in the abilities of people who are blind. These people don’t just say the right things, they show that they believe in my abilities in their actions. I have had many of those people in my life. They have pushed me to consistently exceed every goal that I have set for myself. That’s extremely important. They don’t set low expectations for me. They don’t hold me to different standards. They give me the tools, education and opportunity to succeed.  

Tips for Talking with Someone About Their Vision Loss 

  • if you’re going to talk about vision loss, do it somewhere privately. People feel embarrassed and very often ashamed of what they are going through. They don’t want people at church or work to know. Often, they don’t even want their close friends to know. Privacy is important. It gives people the opportunity to form a mental outline of how they’re going to deal with some of the challenges that they will be facing. 
  • It is important to suggest that people going through vision loss consider meeting other people that are going through the same type of thing. These types of groups provide comfort and often a positive look to the future. You can learn a lot about your own ability when you watch other people who serve as positive models for what can be done. 
  • Never set other people who are visually impaired as the bar. Always keep in mind that everyone is different. Just because someone is able to do certain things doesn’t mean that someone else is going to be able to do the exact same things. Some people may have more experience doing things with limited vision, others may not have as much. Taking all of this into consideration is extremely important. 

Adjusting to vision loss can be extremely difficult and can come with many emotions. It can take time to cope with those feelings and begin to feel like yourself again. It’s important to understand that what you’re feeling is normal and you will get through these times. You are worth the time investment in yourself to seek help with coping if you need it. Reach out to the APH ConnectCenter Information and Referral line to learn more about where and how to get started with vision rehabilitation services that can help you learn new skills and techniques for living with low vision. The take-home message here is to remember you can do this and there is help. 

Additional Information 

Be sure to listen to the archive our webinar, Coping with Your Feelings About Losing Vision: How to find Help and Support. 

And read our accompanying blog posts: 

Feelings Matter – VisionAware 

Words Matter – VisionAware 

The Who, What, When, Where, And Why of Support Groups for People with Vision Loss – VisionAware