JaniceHeck

Finding hope in a chaotic world…

B: Big Brother’s Bits about Being Blind

My big brother, Adam, is blind. He has a major disability, but he is not handicapped.

As a child, his vision was poor, and he had to wear coke-bottle lenses in his glasses, making him the brunt of many jokes and taunts. But he adapted, graduated with the rest of his high school class and went on to be a successful adult. As he got older, his eyesight deteriorated even further. Because his work involved driving, his employer willingly modified his work assignments to eliminate driving and kept him employed with other activities at the company’s home base.

Later, in his mid-50s, additional problems with his eyes (uncorrectable retina detachments) reduced his vision to just light, color, and shadow and forced him to take early retirement. The range of this partial vision was only a few feet, but lately this range has further decreased.  Nine years ago, he started to use a cane to help with mobility. Until recently, he walked around the neighborhood and even downtown, keeping his diabetes under control with his exercise. A recent fall and a fractured elbow have restricted his neighborhood walking at this point.

Despite the disruption to his life-style that visual impairment has caused, Adam remains a very positive person, frequently joking about wanting to take his turn driving when we are out and about. He teases me about the weeds that he “sees” growing in my yard or about the snow that needs shoveling. He calls my house or my sister’s house to “bust on” our husbands. Of course,  he gets no mercy from my husband, Ken, or from my brother-in-law, Rich. Adam gets what he gives!

At 70 years-old, Adam went cross-country skiing at Alyeska in Alaska with Ski for Light (http://www.sfl.org/) an organization that provides one-to-one assistance to cross-country skiers. In his words, it was a blast! This organization, and others similar to it, do much to enhance the lives of both visually impaired and physically impaired by providing opportunities that develop skill and self-confidence.001

At 71, Adam went mountain climbing in Colorado with another branch of Ski for Light. For a week, he and ten or so other visually impaired persons, along with one-to-one guides as partners, climbed to 10,000 feet. They camped out, carrying their own supplies and preparing their own food as they went along. Being blind did not stop them from hiking, cooking, or just smelling the pine-scented air and the campfire.  He loved being out in the middle of nowhere. And he loved the fact that he made all of his own arrangments and then flew to Colorado by himself to meet the rest of the hikers. The airlines support staff were especially helpful.

Now at 78 years-old, Adam still lives independently in his own condominium. My sister, Bev, and I take turns taking him grocery shopping, though he is quite capable of getting his own groceries at the Acme close to his home. He just follows the perimeter of the store and gets what he needs: yogurt, soy milk, deli turkey, bread, vegetables, fruit. When he holds the soy milk container close to his eyes to check the flavor, someone invariably offers to help. People are good that way.

Bev and I often take him prepared meals, but he can cook for himself as well. His favorite dish to make is vegetable stew. Recipe: cut up whatever vegetables you have in the house and throw them in the crockpot, add a can of tomatoes and a can of beans, add some good hot salsa, cook for three or four hours. Simple.

Adam has a keen sense of orientation. Often when we drive him home from a family outing, we will ask him, “Where are we?” And he will announce, “We just passed the light at Oak and Main.” And he is right. At times, we ask him for directions on how to get to such and such a place, and he tells us. His memory of the area from when he was sighted is incredible.

Tonight, Adam attended a meeting of the Cumberland County (NJ) Disabilities Awareness Group. At this meeting, the participants talk about all kinds of issues related to blindness, physical disabilities, as well as other disabilities. He meets with this group once each month and assists with special awareness events they organize. Someone attending the meeting usually drops him off at his home afterwards, but he is quite capable of getting home by bus.

Tomorrow, Adam will go to the Margaret Winchester Enrichment Center for the Blind in Bridgeton, N.J. A special bus will pick him up at his door and return him there in the afternoon. At the Center, he will participate in various activities with other visually impaired friends (exercise, woodworking, adaptive computers, arts and crafts, dominoes, puzzles). On occasion, the whole group will go bowling. Of course, going out to eat is one of the favorite activities at the Center.

Bits about Being Blind

Occasionally, though, Adam expresses frustration with how people relate to him, and he wishes people in general knew a bit more about relating to visually impaired persons.

Here are some bits my family has learned on how to help him without embarrassing, belittling, or discouraging him.

1. Speak directly to the visually impaired person (VIP) when you approach, giving your name. Do not assume the VIP will recognize your voice. When you do not do this, he feels he is not included in the conversation. Do not ask another person near him about him. He is not deaf. Ask him directly. When you leave, say goodbye.

“Why don’t they just say, ‘Hello, Adam. It’s Sam here.’ Then I know who is there. Otherwise I have to rack my brain to recall whose voice it is.”

2. Provide only as much assistance as needed. VIPs have developed strategies for handling many of their basic needs. Ask if the VIP needs help, then wait for acknowledgement before you provide any help. Do not do anything for them that they can do themselves. They can

  • manage their money by folding it in certain ways and by putting it in certain sections of their wallets
  • distinguish coins by their shape, size, and feel
  • use adaptive equipment to help them: talking watches, talking meters (diabetes)
  • listen to recordings for the blind provided by the state Commission for the Blind (one in every state)
  • use adaptive computers that magnify writing
  • write checks and pay bills using the adaptive computer
  • uses buses and other local transportation to get to appointments
  • make telephone calls

2. When you go out to eat, have the person sitting next to VIP read the menu to him. This avoids confusion and prevents the VIP from being overwhelmed with everyone talking at once.  Learn his favorites and his dislikes. This will narrow down what you have to read, and what he has to remember.

3. In dark restaurants or other places, ask the VIP if he wants to take your elbow. Walk at a reasonable pace, watching for obstacles (carts in aisles, chairs out of place). Tell him when something might block his path.

4. Pretend the dinner plate is a clock and politely tell the VIP that the potatoes are at high noon, the peas are at 3 o’clock, and the steak is at 6 o’clock. (Of course, there is that joke where the VIP tells the sighted person that he is used to digital time!)

5. Announce when the VIP is nearing a curb. If there are steps, announce how many steps are in each set.

One thing we notice a lot is that people are respectful about Adam’s disability. When we walk on the Ocean City, NJ boardwalk, for example, people see the cane and move aside, allowing Adam to walk without bumping into someone. That’s commendable. We appreciate that kindness.

VIPs can live active, independent, and productive lives with minimal assistance.  Adam would say, “Being handicapped is a state of mind. You can’t just sit still and mope. You just gotta get out there and keep moving.”

With a big brother like Adam, you just gotta keep going. No time for a self-pity party. Get out there and pull weeds or cut the grass or go for a walk or climb a mountain. Life is meant to be lived! Just do it!

And wouldn’t you know it, tonight Adam started talking about going on another mountain climbing expedition! I think you have to agree: this guy is not handicapped!

YOUR TURN

Do you know anyone who is visually or physically impaired? What lessons have you learned from them?

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22 thoughts on “B: Big Brother’s Bits about Being Blind

  1. This makes me wonder what it would have been like for my mother. After she died, I found out from my father that she was legally blind — and I’d never known it. It had literally never gotten mentioned. She’d been born blind in one eye and had poor vision in the other one, corrected by glasses. Apparently because she was born one month premature. There were a whole bunch of other problems like poor manual dexterity and her being slow that were far more obvious. Those may have hidden the blindness. I remember her getting upset because she was trying to listen to a voice mail to recover something she’d left on the bus and it ran through the information two fast. I told her to just keep calling back until got all the information.

    Would my mother have kept her sight as she grew older? If not, how would it have impacted her other problems?

    • Your mother must have been an amazing woman to function for so long without people realizing that she had a vision problem. The vision problems do affect mobility so much. As my brother loses more vision, I notice that he feels less secure about his walking. He used to walk like a demon possessed, now his walk is much more tentative. His last fall has slowed him down quite a bit.
      Thanks for telling me about your mom. It is obvious she did not want to dwell on her vision problems, and that is commendable.

  2. Such a fantastic post, Janice. I so enjoyed meeting, Adam, who sounds pretty amazing and definitely fun to tag along with. I especially appreciated your tips about relating to blind persons, since really, there are considerations to keep in mind that aren’t necessarily common sense, so definitely very good to know if we want to avoid being obnoxious to the visually impaired .

    I had a very good friend with macular degeneration who reminds me a great deal of Adam. Although there were certainly times when losing his sight was clearly a frustration to my pal, Louis, his impairment in no way slowed him down. He made beautiful Christmas ornaments from old cards that involved intricate folds and careful assembly, was writing a novel, collaborating on several history projects, etc. He had no concept of slowed down or accepting limitations that would have kept him from doing what he most enjoyed. When he died at 96, he was still going, going, going on a bazillion projects.

    • Thanks, Barbara. Adam is a great guy with a great attitude. We are all proud of him. So nice to hear about your friend, Louis, and how he kept going despite his visual impairment. Attitude about a disability makes such a difference.

  3. Wow, skiing and mountain climbing?? It was so nice to meet your brother, Adam and you’re right – he is definitely NOT handicapped! Kudos to him for his adventurous spirit and ability to experience life more fully than many sighted people do!

  4. What a great post! Best of the day. Thanks! I feel more comfortable should the opportunity ever arise to be with a person who is blind. People are only handicapped when others treat them as such.

  5. Lori Reinhold on said:

    Great writing Aunt Jan. I have the picture of Dad in Colorado framed. It was great of you to write those tips, it will help those who may know someone similiar and perhaps hadn’t thougth of some of those things.

    Thanks for writing this!

    xo, Lori a/k/a Louie

    • Lori, It was my pleasure to write this. Your Dad is a great guy. Sometimes we forget how hard it is for him. But I so appreciate his positive attitude. Love, Auntie Jan

  6. Your brother is an amazing person, Helen! Thanks for sharing his inspirational story in such a lovely post.

  7. My mother has been blind since she was a teenager, but she still managed to raise 3 kids alone all while holding down a steady job as a seamstress. Your brother and my mom sound like they are cut from the same cloth!

    Give him my compliments.

  8. theelectriccane on said:

    Reblogged this on Theelectriccane's Blog.

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  14. Carol millward on said:

    I really enjoyed reading about your brother. Mine has some mental handicaps that he has adapted to, but his sight is still ok. It makes me realize how blessed we are when we have our sight. That could have happened to us just as well, and I don’t know that I would have handled it with the grace that Adam did And some who have eyes still don’t see, as the Bible tells us. He is truly an inspiration. I know he appreciates all that you and Bev do for him.

    • Thanks, Carol. That brother of yours (my dear husband) does have some mental issues, plus good sight in one eye. But he’s a good guy anyway, and I wouldn’t trade him for anything… And it’s great to have a sister live Bev. Really, it takes two of us to handle all of this. We each try to visit Adam at least two days a week. Wish we could do more. Thanks for being my terrific sister-in-law. You and Phil make a terrific couple. Enjoy your coming trek.

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