LIVING WITH BLINDNESS OR LOW VISION

 

By Bridget Toal and Jackie Waters

 

This article is intended to prepare the family with the understanding and tools they need to adapt to living with a person that is blind or has low vision.  It was written by a blind person in collaboration with a person living with a family member with low vision.

 

Perspective of a blind person

 

I am completely blind.  I do not even have light perception.  I lost my sight at age 30 years old.  This puts me in a different group from those blind from birth or low vision.  The low vision does not like to be grouped in with the blind and they will use the last percent of sight if at all possible and I do not blame them.  I have to stress for both conditions of low vision and blindness consistency is key.  Do not frown upon OCD (Obsessive Compulsive Disorder) it is helpful!

 

When setting up house for a low vision or blind person or visiting it is best to be aware of what goes where.  If you pick something up, make an effort to put it back as close as you can to where you found it.  Keep clutter, shoes and other items off the floor, steps or the main walkway of the home.  If you are bringing items into the home, ask where to put the items or let them get the item from you and let them put it away to make it easier for them to find later.

 

For a blind person, I find that there are three different living situations.

• Living alone

• Living with an adult with habits of their own

• Living with children that are growing up with a blind parent.

 

Living Alone

 

As mentioned I lost my sight as an adult.  So, when I lost my sight, I changed my house a bit.  I got rid of candles.  Not every blind person does but I did.  I also packed up my smaller nick knacks.  Most do not need to do this but I felt better then to risk knocking them off the tables.  I started keeping things in more exact places and reducing clutter.  I had a drop spot so if I did not have a place for something, I put it there until I found a place.  When I had visitors, I had them put things (coats, shoes, packages) in the same places.  Just so nothing would be an item to trip over.  I used some labeling systems but made up most on my own.  Rubber bands; safety pins and beads make up good systems.

 

Living with an adult with habits of their own

 

I think moving in with another adult is the most difficult, as most newly married people can agree.  The things to consider are not that different.  It takes the same compromise but for the blind person it includes safety.  For kids, seniors or the handicapped you would make sure outside paths are free and clear, the main walkways through the house are not full of clutter and that steps are well lit and clean. The same is true for the blind.

 

The difference is the little things.  A remote lost in the cushions might as well be in Mars.  The same jug for milk or OJ could be bad when it comes to the morning coffee.  Toothpaste and Ben Gay is not a mix up you want to be part of.  There are simple solutions.  Try to keep the placement consistent.  Keep the milk to the right of the OJ.  Put toothpaste on a different shelf.  Place a rubber band around the conditioner and not the shampoo.

 

Living with children that are growing up with a blind parent

 

I personally believe the easiest situation is living in a home with children growing up adapting to the needs and habits of a blind person.  They grow up getting use to certain ways that help.  They have the habit of pushing in chairs; closing doors; putting things back where they belong…yes, kids!  They use more adjectives then “here, there, behind you”.

But as always with kid’s constant reminders are needed.  My kids have their own space, one I do not enter for safety and mental sanity.  They clean it up and organize it on their own and I do not step foot in the room.  In the house the main part of the floor is clear and if there are toys out they are to the side.  If things are on the step, they are off to the right side.  If something is changed I am told.

 

Some things to do as a blind person living in a home with another adult and my kids…

- Keep drinks in the same spot and shelf in the fridge.

- Mark the different milk/juice with rubber bands.

- For Dry goods, use an index card and a rubber band with either puff paint for one or two letters for those who can read Braille or a specific sticker/pen gadget for the blind called The Pen Friend (a voice labeling system).

- Keep specific shampoo and shower items in one area and mark them with rubber bands to know one from the other.

- Divide up the closet and mark clothes with safety pins; beads; braille tags and cut labels (not happy about the tag less shirts).

- Fold white socks but roll black socks.

- With two children.  First born everything goes on the right; second born everything goes to the left.

- All remotes go to one side of a certain table.

- Snack foods are put in the same spot…most of the time.

- For cooking make up files on the computer; type in the name; cooking directions and other information.  Then just label the item and refer to the computer.  Use a voice response system on the computer.

- Keep a medicine file on the computer.

 

There is a whole line of gadgets that can help for daily life.

- Smart phones - have given the low vision and blind a great deal of independence with all of the apps that are available.

- Talking clocks

- Phone caller identifier

- Intercom, inside/outside

- Talking thermostat

- Color, light identifier

- Money  identifier – also available as an App on a smartphone

- Talking kitchen equipment (thermometers, level indicators, boil alert, etc.)

- Talking human scale…not always a favorite

- Book reader/note taker – available as a smartphone app

 

 

Perspective of a person living with a family member with low vision

 

If you are tasked with preparing your home for a person with a visual impairment, you may not know where to begin. Of course, your overall objective is to ensure the comfort of the person, but you also want them to feel confident and achieve independence. One of the best ways to approach modifying your home to accommodate a visually-impaired person is to work with safety in mind first. As you work to make sure your loved one is safe, your modifications naturally will ensure their comfort and independence.

 

Home Organization Tips

 

Organization is key to preparing your home for a person with a visual impairment. From decluttering to storing medication and cleaning supplies safely to making sure they can find their way around your kitchen, organization is a must.

 

When you organize your living space, make sure that items are placed in sensible locations. Group similar items together and store items that are used at the same time with one another i.e. place dish detergent near sponges and kitchen towels. This method of organization also will ensure that you keep all cleaning supplies in one location and that they are away from food items to avoid the chances of confusing them for food items.

 

It’s also helpful to organize food and cooking tools in a safe and sensible way. An organized kitchen increases safety for everyone in the home. Place heavy pots, pans, and slow cookers in low areas so people do not have to reach above their heads to take them down and use them. Make one spot for storing knives, graters, and other sharp kitchen tools. Use covers or sheaths for these items and purchase broad-bladed knives to ensure better control. When cooking, place dirty knives behind the faucet instead of in the sink with other kitchen utensils.

 

Clearly label foods and shelves with large lettering and contrasting labels and marker colors or braille labels. Store items in the same place every time to minimize confusion. When putting away groceries, it is helpful to label them first and to place multiples of items in rows from front to back on shelves or in the pantry; this organization strategy helps a person with a visual impairment to count items and know how many are on hand when making the next shopping list. If you have items of similar shapes and sizes, you may want to use brightly colored adhesive stickers, raised dots, or a rubber band system to label them and avoid a mix-up. For example, label cans of corn with bright yellow stickers and cans of beans with bright green stickers, or put one rubber band on a half-gallon carton of milk and two rubber bands on a half-gallon carton of orange juice.

 

Home Lighting Tips

 

Light contrast - Low vision people do better with a sharp contrast in color but depending on their eye condition black print on a yellow back ground or a yellow letter on a black background is best.  Low lighting or pin point lighting works better for them.  They will learn this with their eye condition.

 

Lighting increases safety for people with low vision by decreasing the risk of falls and injuries. Make sure rooms are well lit with natural lighting but install sheer curtains to block glare from outside. Keep windows clean and free from clutter to allow in as much light as possible, and trim outside vegetation that blocks light from entering the home. Use night lights in bedrooms, bathrooms, kitchens, hallways, and walkways to make it easier for people to navigate throughout the home. Install a light above the bathtub or shower to illuminate this often dark part of the bathroom. Use task lighting with the proper light bulbs to make it easier to complete everyday activities. Make sure that you have lights at the top and bottom of stairways; some people add small lights to stair faces and underneath stair railings to add even more light to stairs in their homes.

 

As for outdoor lighting, make sure that you have installed lights to illuminate sidewalks, driveways, and stairways. If you opt for solar lights, make sure they shine brightly enough at night. Trim bushes or other plants and vegetation that may block sidewalk lights. Install lights with motion sensors around your home so problems will not occur if someone forgets to turn on a light before leaving for the evening. Make sure that you are not adding glare inside your home with your outdoor lighting. Also be sure to bury wires to eliminate tripping hazards.

 

If you have to keep anything in mind it is consistency, order and safety.

 

For additional assistance call your local Blind Association, American Foundation for the Blind or your local Lions Club.

 

© 2017 Shillington Lions Club Foundation

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Introduction

This was written three years after Bridget became blind.  The original purpose was to help in recovery but when read today it educates people both with and without sight.  As a sighted person, I find this account disturbing and wonder if I could cope with losing mysight.  As you read this put yourself in Bridget’s shoes, how would you react?

 

Dan Lubas, Editor

 

 

 

Who am I?  Years have gone by.  When I was sighted I thought it was bad that I couldn’t get out of the eighties.  Now I am frozen in time in my mind.

 

What defines you to a stranger?  What is a first impression based on?

 

How do we control prisoners?  What is the first thing we do to people who join the military?  Catholic schools, nuns, monks.  Uniformity, no identity.  In prison everyone is given a standard uniform.  There is no status; nothing to make one better than the other.  The military strips you of everything you once were.  Everyone is the same, created equal.  Catholic schools use uniforms to remove status, focus on education and forget superficial possessions.

 

During puberty kids push the envelope to define themselves, to be different, to stand out. That is how important your shell is.  And that is exactly what that is, a shell.  Many can fake a social rank with clothes, pretend to be someone they are not.  But what makes you cross a room to talk to someone?  What you see on the outside.  That does not make your personality.  Your personality is what keeps a person interested in you.

 

The pins you always wear people notice, the crazy shoes you manage to find.  Your signature item, the mismatched style that you create tells volumes about you.  Are you a conformist or a nonconformist?

 

Where did that go?  I cried for months after losing my sight.  Therapy, drugs, nothing helped.  I was in an endless whirlwind, going down and down.  I felt like I was losing me, myself, who I was, who I worked so hard to become.  I couldn’t stop saying, “I am losing me.”  “I don’t want to live this life.”  Not die, I just didn’t want this life I now had thrusted upon me.  What about my trademarks that made me, Bridget?  What about the oddities that worked just for me?  Where did my control go over my own life?  One by one things were being taken away.  Small things that you wouldn’t think twice about seemed earth shattering. What about my plan?  I worked hard to get what I have and where I am, it was my turn to take care of those who took care of me as a child.  My five year plan is gone.  The future I was going to provide for my family, gone.  I am being financially raped.  Sell, sell, sell!  Everything I accumulated I have to sell.  My income has been slashed in half.  Back to family pitching in because I am short this month.  I thought those days were over.  Where is that future I planned?  My house, emptied.  All style of junk and meaningless items has now become clutter and obstacles for the blind feeling fingers.  Now practicality rules where furniture and items go, not where you want it just because.  My career, gone.  Now what do I want to do when I grow up?  Searching,finding something that is worth getting out of bed for, something that interests me.  It took so long to find that career, now it’s gone.

 

Can you tell me what color my lipstick is?

 

Show one picture to ten people.  You will get ten definitions.  Who is defining me?  Where did I go?  Who can see what I use to be?

 

Is my personality strong enough to hang on?  It has to change.  The strong independent person I use to be, gone.   Come to me, I will take care of it.  I will drive, I will go for that.  I have the ability to take care of you.  Don’t you worry?  No more. The independence is gone.  My private life is gone.  The midnight run to the supermarket to grab something in the personal care isle has become walking down a runway strip in the spot light.

 

How many people do you tell that you are having sex?  How many people know about what is happening to your body in the bathroom?  Maybe it was just you and the walls.  Maybe a spouse if you were lucky enough to have one.  Now I have no walls, all doors are open.  Not that I was a secretive person, I was an open book.  But maybe I would like to wait a week, check with the doctor before my news is shared with someone else.

 

Thank god for e-mail, right?  My only private place.  All my written letters, general mail, bills, what I bought with my credit card, how much I spent.  All open to the eyes of another.  A friend, a family member, a volunteer to come and read my mail.

 

Is my eyeliner smudged?

 

I go shopping.  It was never a pleasant experience in the sighted past by myself.  Now, someone must endure my basic frustration, my white hot anger when I just can’t get my mind around what I can’t see.  Did they see everything?  Do they explain too much?  Say goodbye to the method of:  I will know it when I see it, now it is items on a list.  How do I do that when I haven’t seen the new products?  Do they know what I am looking for?  Do I?  It has only been three years, only 36 months.  How many fashion trends have come and gone?  I still see fashion in my mind from 2003.  How can I tell someone to find something that is frozen in my minds eye?  How can I not be frustrated when the same products are not still in the stores?  I did not see the deletion of one version and the progression of the new one.  What will happen in ten years?  Am I still going to see fashion of 2003?  Will I understand the new trends and hot items?

 

Do I want to?Is my hair ok?

 

Beauty is in the eye of the beholder.  What about my eye?  My picture of myself?  How do I see myself?  Simple, as I looked in 2003; still a frozen image.  I gained weight.  I know I did because I fit in my clothes differently.  It is a cold slap in the face with that reminder.  Why can’t I fit in this when it fit just fine in 2003 that seems like yesterday.  I’m frozen in time.  I never would have allowed myself to become this person, this weight, when I was sighted.  You look good.  Do I?  I lost the extra weight.  I am stuck at 30 years old, my hair, skin, weight, style all frozen.

 

Clothes make the man, right?  Was it Einstein that wore the same clothes everyday?  A closet with the same seven shirts, pants, tie, jacket, shoes.  He did that so he wouldn’t use his brain energy on the matter.  How simple.  And what a good looking man he was…

 

How can anyone help you?  How can you repress your frustration?  How do you quiet the screams in your head?

 

I am losing me.

 

If you saw the weight gain you would have never accepted it.  Would you have gone out in your pajamas?  Who cares now?  All the outside, the things that were superficial, are gone.  Does that make you better?  Who knows?  You were never this person before.

 

How can you make your loved ones feelings of not being able to help be ok?  Haven’t you already been raised by your mother?  Are you not an adult?  At one time didn’t I give my opinion and not worry what it was?  Do I now weigh everything said?  Watch bridges that are about to burn.  Beggars can not be choosers.  Don’t bite the hand that feeds you.  Stifle.  Bite your lip for the better good.

 

Where is that girl I use to be?

 

Bet you never noticed how many times you use a public restroom.  No big deal right?  You try to be quiet, distinguished, still feel mature.  It is when you can’t get there without the whole table finding out what is going on.  For some reason it is like going to the supermarket for a personal item and they do a price check over the sound system.

 

You find that you are out of something, or you need to run and get something that you need right now, that option is gone.  How many phone calls do you have to make?  How many people have to know what you ran out of?  How many days in advance must you map out your errands?

 

Do I have the same color socks on?

 

Eyes are the windows to the soul.  An expression says a thousand words.  Body language says what you are unable to say.  What?  Can you say that out loud?

 

Where did the look of love go from my partner?  Why don’t I see your eyes crinkle when you laugh?  How did I miss you looking away because you didn’t want to talk about it?

 

Were you pulling my leg?  Did you give me a sly smile with that comment?  Are you smiling because I knew that is exactly what you wanted?  Did you like how I looked tonight?  Was that a look of desire?  Are you even listening?  I am sorry, were you talking to me?  Did I answer what was directed to the person next to me?  Do I wait for them to repeat what they said, or do I keep saying ‘what’?

 

How fast is his tail wagging?  Is there a toy at my feet?  A triumphant look at the first time the baby tied her shoes and the babies total look of pure surprise at every peek-a-boo.  She can’t be driving, she is only thirteen.  Why is his voice deeper?  When did he get taller than me?  He passed away?  But he was fine the last time I saw him.  I smell the flowers, I hear the crying, and I know I am at a funeral.  Then why do I still reach for the phone to call you?  Is that why the holidays hurt so much?  When did all of this happen?  Everyone stays as they were in 2003, some may like that, frozen time, not aging.  Then how did you get older?  How is your time to go away here already, when did you grow up, when did they grow old?

 

Mommy look at me, look at me, look at me.  Why are you wearing sunglasses, what are you hiding?  Can’t you do that yourself?  What, do I have to put it in your hand? Oh my god, I am sorry.  I didn’t know.  I am so embarrassed.

 

How long have I lived in this house?  Why does that chair keep moving?  How many times do I have to hit it?

 

What time is it? Morning, are you sure?  It doesn’t feel it.  Is it AM or PM?  Where am I? What was that noise?  Do I smell smoke?  Was that the door?

 

There is a spot on my shirt?  Oh.  Thanks.

 

Why are all the drinks I spill sticky?  The buttered bread always lands butter down, right? Dam, where did that pill roll to?

 

Out of sight out of mind, how does that work for the blind?  Would I lose my head if it wasn’t attached?

 

When did I become so obsessive compulsive?  Does it really matter that the remote was put back facing the other direction?  When did I get the ability to know if something was moved an inch from its original place?

 

My shoe is untied?

 

How did an open door become dangerous?  Although my guest does not know, a critical decision is to put the lid down or not in the bathroom.  Forget candles.  Fire is not a friend.

 

Remember the game in grade school of boxes with a hole to stick your hand in and you have to guess what is inside of the box?  I live in the box, trying to figure out what is around me.

 

How do I see your look of pain or the secret look to warn me not to say something?  How do I get the eyeball signal to make the excuse to leave?  Can you picture a look of a loved ones face that is sly, a coy smile, a mischievous wink. That is the whole conversation, no words needed.  What about that look of pity.  You didn’t want to see that one anyway.

 

You don’t understand, and you wouldn’t want to.  I don’t want to.

 

I walk down the street, pause at a corner.  There are two types of people, the ones that run to help.  Very nice, no thank you, I am ok.  Or the one that is so silent, not revealing that they are looking, just looking.  But I know you are there.  I can feel the tightness in my chest; I can feel the weight of the look.  There is nothing wrong with either method.  I can’t even say which is preferred.  A mother hushing a child who asks:  why does she have that stick mommy?  Knowing as you walk down the street or through a crowd that you are being watched.  You are not a side show but not the norm either.  How do you watch your child or spouse, loved one struggle, start over with basic functions that you learned as a child?  You want to do everything for them, but know it is the best interest for you both for them to do it themselves.  No matter how many times they fall down, sit and cry with their face in their hands.  You have to stand on the sidelines and remain quiet or leave.  If you leave, are you abandoning her?  How can you take her pain and fear of this whole process?  How can you make it right?  That is what you are supposed to do for your loved one, right?  You have no clear answers, and neither does she.

 

Where did that doorway go?

 

You function everyday.  What choice do you have?  You manage; all goes well, most of the time.  Then there is the crack in the wall, the last straw, the lock starts to give.  One simple thing brings everything down.  Stops it on a dime.  It is like you have not learned anything.  The questions of the first few months flood your mind.  Who am I now?  What am I suppose to do?  What do I have to offer now?  How can one bad day bring back the smothering pain and grieving, just like it felt on day one?  What happened to time will heal.  It will hurt less as time goes on.  You are never given more than you can handle.  Then why am I crying so hard I can’t breathe?  Where was that line of, I don’t want to live this life, been hiding?  It hides and waits to show its evil face.  What do I ask now?

 

Who was I?  Who am I now?  Who do I like better?  Embrace the fact that you have become:  you know her, she is the blind girl.

 

© 2017 Shillington Lions Club Foundation

 

 

1. Living With Blindness or Low Vision

 

2.

 

 

Blind Scream and Lost Identity
By Bridget Toal

 

Copyright © 2017, Shillington Lions Club and Shillington Lions Club Foundation, All Rights Reserved