Welcome to CCLVI

by Tom Lealos

When your eye doctor tells you that the corrected vision in your best eye is now 20/70, you have officially entered the world of low vision. You are no longer sighted, but you are not blind yet. I refer to this as “visual limbo land.” You are partially sighted, or simply visually impaired. No matter what label you choose, your life has been changed in ways that you cannot even begin to imagine.  You have lost one of your five senses and it is mighty scary. Yes, you now have a handicap, but the good news is, you do not have to be disabled. Read on.

No matter how you began to lose your vision or which eye condition you have, you will have to make certain lifestyle adjustments. Some eye diseases reduce your vision and remain somewhat stable for the rest of your life. Others continually steal your vision until eventually you become totally blind. I would guess that most people with low vision fall into the latter group. Their low vision journey varies in length depending on a wide variety of factors. It took about 40 years for me to finally transition into total blindness. This gradual loss of vision allowed me adequate time to adapt along the way.

No matter how long your low vision journey takes, it is very frustrating to you and to those around you. There are even those who believe that it is much better to be totally blind because it is a finite condition which allows for permanent adjustments to be made in one’s life. Looking back, I take the position that some vision is always better than no vision at all. There are those who would argue with this, but it was, and still is my life.

Like most things in life, vision loss has a very strong mental component. For those of you who know me, it will come as no surprise that I suggest becoming involved with a low vision support group to help you with this struggle. Knowing that you are not alone and that there are people out there who can help you is extremely comforting.

One of the major hurdles you will be faced with along the way, if you are a driver, will include the abrupt loss of your driver’s license. Wham! The impact this has on you, your family members, and close friends cannot be minimized. Here, I caution you to be very sensitive to these people’s time when asking for rides to places you need to get to. Never take them for granted. Learn to consolidate your errands on each trip and express your appreciation often.

You will gradually get to the point when you can’t recognize people’s faces anymore. This can become very frustrating and cause you to become somewhat of an introvert, avoiding crowds as much as possible. Take solace in the fact that as your vision declines, your other senses, especially your hearing, gradually compensate at an equal rate. You will learn to trust your hearing without question.

Back when I first started losing my vision, I had returned to work after a failed retina surgery. We had about a dozen ladies working in our sawmill office. None of them knew how to react to me and would ask how I could still tell them apart. I explained that I would remember what they had on first thing each morning and could carry that mental picture through the rest of the day.  In addition, I told them that I could still recognize each of them by their size and shape.  As we all chuckled, I added that if all else failed, I could always identify each of them by their very distinctive voice.

At some point, you will have to figure out how you will navigate in your own home, yard, neighborhood, and out in public. Learning orientation and mobility (O&M) skills, coupled with the use of mobility or identity canes or guide dog, will come in handy. Avoid the stigma associated with having to use a cane. Here is that mental thing again. To this I strongly advise, “Don’t be a ‘stubborn bonehead.’” Take the time to learn cane skills sooner rather than later.

As your vision declines, you will find it difficult to read printed materials of all kinds. Don’t panic. There are a lot of solutions to this problem. It is commonly understood that learning braille is a good idea. I can attest to the fact that the learning curve gets steeper the older you get. Younger folks have an easier time with this process. The other solutions are found in the wonderful and somewhat scary world of technology. Some not-so-techy items include handheld magnifiers, writing guides, bold pens, and paper with bold, widely spaced lines. At the top end are mobile electronic magnifiers, desktop CCTVs, screen magnification and audio screen-reading programs for your computer, digital readers for the NLS talking book program, and of course, smartphones. Do not assume that you are too old to learn how to operate these devices. They all come with tutorials, and there are many organizations and agencies available to provide learning services. Those of you who have kids and grandkids will find an inexhaustible supply of tech knowledge right in your own family. Embracing technology will definitely help you stay in the game.

The many issues and challenges encountered with low vision can be quite varied and different from those encountered by blind folks. So much so that in 1979 the leaders of ACB, together with leaders who were low vision at the time, saw the need to create a special-interest affiliate to recognize these differences and focus on avenues that would address them. The constitution for Council of Citizens with Low Vision was adopted during the ACB convention in 1981. A short time later they went international, thus the “I” in CCLVI. The wide range of issues surrounding low vision are as broad as the variations of visual acuities found within this community. CCLVI is proud to represent the low vision community as part of the ACB family.

CCLVI is governed by a 12-member board of directors, which meets on the second Tuesday evening of each month. The real work of the organization is accomplished by the selfless individuals who serve on the numerous committees.  CCLVI is active in ACB’s leadership meetings and their annual conference/convention held in July. They offer three educational scholarships and one for selected video magnifiers in honor of Dr. Sam Genensky, one of the founders and the inventor of the CCTV. Their newsletter, “Vision Access,” is published six times a year to keep members connected and informed.  The CCLVI website, found at CCLVI.org, tells the CCLVI story and contains a wide variety of helpful information on how to confront your low vision. They also have a social media presence on Facebook, Twitter, and LinkedIn.

CCLVI also has Zoom calls on a regular basis. On the first and third Monday evenings of each month they host chat calls for members to talk about a wide variety of subjects. On the second and fourth Monday evenings of each month they host Game Night, which is always a lot of fun.  The “coffee break calls” every Friday morning are usually very lively, and the ham chats on Thursday evenings are highly informative for ham radio buffs.  The “Let’s Talk Low Vision with Dr. Bill” Zoom call is held every third Tuesday evening and is recorded and archived.

Along with other special-interest and state affiliates, CCLVI works with ACB on a number of legislative matters. They have an ongoing effort to improve the safety in autonomous vehicles.  They are keeping on top of the reauthorization of the surface transportation bill to ensure increased safety and access for blind and visually impaired travelers. Medicare’s low vision aid exclusion is still causing extreme hardship for those who need multi-lens magnifiers of all types to overcome difficulties with reading.  The battle with the U.S. Treasury wages on to force them to honor their commitment to make U.S. currency accessible to low vision and blind individuals. CCLVI’s advocacy efforts are ever vigilant in matters that affect their low-vision members and the blind community as a whole.

CCLVI helped me get through my low-vision journey. Involvement in this organization exposed me to things that I didn’t even know existed 40 years ago. Now that I am totally blind, and looking back, I can’t imagine how I would have overcome the challenges I faced along the way without their support.

So, if you find yourself entering the world of low vision, and you are looking for answers and help, check out CCLVI. Remember, this organization was created by people just like you and welcomes your membership and participation.

To learn more about CCLVI, visit https://www.cclvi.org.

This article was featured in the March Edition of the ACB Braille Forum.

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