Ask Sharon

SHARON LIBBY OUTREACH

Click on CONTACT SHARON (above) to send me your questions.
The following questions have been provided by my friends and readers.
All answers are my thoughts and mine alone.
My answers are based on my own experiences as a post polio victim confined to a wheelchair for over 50 years.

OVER THE YEARS MANY PEOPLE HAVE ASKED ME FOR GUIDELINES THAT I HAVE USED WHEN I TRAVEL. 

Let me start by saying, if this is your first trip while being disabled, I would strongly suggest you start with a mini-vacation; staying at the same motel. Consider a destination that you can drive to in one day; that way you won't have to change motels until you feel more at ease. I have been very lucky to have been able to travel through 27 states; and, believe me, every motel is different. Only you know what your special needs are, so asking a lot of questions will, hopefully, make your vacation an enjoyable experience. Above all make your reservations at the hotel directly. Do NOT use the 800 numbers because those operators will not be able to answer your questions.

When I make reservations I always ask:


1. Do you have a wheelchair accessible room? Don't just ask for a handicap room because some motels have handicap rooms that just have grab bars alongside the toilet and tub. You want a wheelchair accessible room so you have enough room to maneuver your wheelchair and a wider door to enter the bathroom. I have found that one king size bed allows more room for a wheelchair-user than two queen size beds do.

2. Ask for a smoking or non-smoking room. If you are a smoker, some motels will not allow a smoker in a wheelchair accessible room.

3. Make sure there are grab bars alongside the toilet and be sure to check the height of the toilet. Don't be afraid to ask the manager to measure the toilet for you. The ADA says the toilet height should be 17-19 inches from the floor to the top of the toilet seat. Some motels provide a toilet seat extender. In my travels I have found wheelchair accessible rooms with toilets as low as 15 inches and as high as 24 inches; both are very hard for me to use.

4. Make sure there are grab bars in the tub/shower and ask if there is also a hand-held shower head. If you can't stand up, there is no way for you to reach the shower head. Some motels provide a shower chair; some do not. Some motels offer roll-in showers; but, you still need the hand-held shower head.

5. Many motels offer a Continental breakfast. Find out how far it is from your room to the eating area. If you use an electric wheelchair, then that shouldn't be an issue. 

6. Most wheelchair accessible rooms have a remote control for the TV but it's always good to ask. Some motels keep the remotes at the check-in desk.

7. Ask the manager to measure the height of the bed before you make a reservation. If he/she won't do that, then you should find another place to stay. Years ago motel beds were all the same height, but lately I have found beds are 27-36 inches high; that's way too high for a person that can't stand up to get into. I called the ADA on March 17, 2011 and there is still no existing law regarding the height of beds in motels.


8. Check out amenities that are important to you: A refrigerator, microwave, a computer hook-up, a pool, as well as restaurants that are on property or close-by.


9. Carry a small notebook with you. Make notes as to whether the motel was a good experience or not. Write down the room number that you stayed in. I even take pictures so if I want to go back, I can actually see what the room looked like when I stayed there.

I hope this list helps. Whatever you do, if a motel turns out to be something that is not convenient or doesn't meet ADA requirements be sure to let the manager know of any problems you had. Good luck and happy traveling!

WHAT DO YOU WISH YOU COULD DO THAT YOU CAN’T BECAUSE OF YOUR DISABILITY?
After thinking about this question for a while, I could only come up with three things. They are: 1) I wish I could hug my husband standing up next to him with our arms wrapped around each other. 2) I wish I didn’t have to ask for help. I'm very fortunate to still be able to do a lot for myself, but if there is something that I can't do, like reaching something that is up high in a cupboard/closet, I still hate asking for help to reach a specific item. I have had to learn to accept what I cannot change; at times that's easier said than done. 3) I wish I could drive. Not being able to drive anymore, due to my shoulders weakening, has taken my independence away. I try very hard to think about what I can do and not what I can't do. I was told years ago, "You are what you think." That statement really hit me because if I chose to think of all the things that I can't do anymore I would be a very negative person and I don't want that for myself.

CAN YOU DO YOUR OWN HOUSEHOLD CHORES?
Yes, I can wash, iron, cook, and clean. With all the new products out on the market, like long-handled dusters, it's amazing what I can reach when I'm cleaning while sitting in my wheelchair. Years ago I could use a top-loading washing machine, but now I have to use a front-loading washing machine because I can’t "hop" up on the arm of my wheelchair anymore to reach down inside a top-loading washing machine to take the clothes out. I do all my household chores sitting down. I have never stood up to do anything so I know no other way. Once a gal asked me how I make my bed. My comment to her was, “I do it just like you, except I’m sitting down.” I can make a twin, double/full or a queen size bed, but I can’t make a king size bed simply because I can’t reach across to the center of the bed to adjust the sheets, blankets, and the bedspread.  I might do things differently than an able-bodied person but I get the job done.

IF THE AMERICANS WITH DISABILITIES ACT (ADA) HAS SPECIAL RULES AND REGULATIONS FOR PUBLIC BUILDINGS, THEN HOW DO THEY GET AWAY WITHOUT COMPLYING UNDER THE LAW?
I cannot give you a pat answer because each situation is different. There is a fine line when complying with the ADA. If you feel there is a public building in your town that is not in compliance I would suggest you discuss your plight with the manager first. Bring to his/her attention your specific problem to see if they are willing to fix it. If they are not and become rude, then all you can do is fill out a complaint form and file it with the ADA. The form can be found on my Disability Information page. Just click on the link Title II of the ADA. We must make our voices heard.  

WHAT IS THE COST FOR A WHEELCHAIR ACCESSIBLE VAN?
Wheelchair accessible vans vary in price. A lot depends on if the van is used or new and what handicapped equipment you need installed. I've seen used vans for $10,000-$14,000 and new vans as high as $60,000. Always remember that each person's disability is different; we all have our own special needs. Some people can manage in a regular height van and some need a van with a bubble top. A lot depends on how tall you are, what your special needs are, how big your wheelchair or scooter is; the list goes on and on. Go to a local dealer that specializes in this field. You might find a used van that is perfect for your needs. If not, then there will be the initial cost of a new van, the cost of a wheelchair lift, hand controls if needed, and tie-downs to keep you safe if you stay seated in your wheelchair in the back of the van while traveling.


There are also wheelchair accessible mini-vans with ramps that automatically come out of the van for easy access. These vans usually have a lowered floor and are very pricey. They have two unique features: One side of the van “kneels” or lowers so that the ramp won’t be too steep and the floor is lowered on the inside, anywhere from 8-10 inches, to allow enough head room for the wheelchair user. With this type of van you can either stay in your wheelchair and drive, or transfer to the driver’s seat.  If you drive while sitting in your wheelchair, then a special tie-down bar is set to affix to your wheelchair to keep the wheelchair from moving while you're driving. No matter what type of van you buy the cost will totally depend on what options you need.

HOW DO YOU GET ON AND OFF THE TOILET IF YOU'RE CONFINED TO A WHEELCHAIR AND CAN'T STAND UP?
I transfer with one hand on the armrest of my wheelchair and the other hand holding on the grab bar that is affixed on the side wall next to the toilet. I also get dressed or undressed sitting on the toilet because it gives me more stability. It’s easier for me; but, I do know handicapped people that can change clothes while sitting in their wheelchair. I tried to do that and I just can't. We all have to find our own way of doing things. When I visit somebody that has a wheelchair accessible bathroom but there is no grab bar, I have to be very careful not to fall.

DO YOU GET ASKED IF YOU CAN DRESS YOURSELF? I AM DISABLED AND PEOPLE ALWAYS THINK I NEED HELP DRESSING MYSELF. HOW DO YOU DEAL WITH THIS THINKING?
Yes, I can dress myself; and, yes I know there are people that think I can't. Thank goodness I can still do this by myself, but I did need help when I had major surgeries. There are many that think handicapped people can't do anything, including dressing and taking care of their own personal needs. I'm always glad when people ask me questions rather than just assuming they know the answer. You and I are very fortunate that we can do this task; but, remember there are those that do need help depending on the extent of their disability.
 
I AM CONFINED TO A WHEELCHAIR AND WENT TO USE A PUBLIC RESTROOM THAT WAS MARKED WITH A BLUE WHEELCHAIR SYMBOL ON THE DOOR. THE STALL WAS OCCUPIED SO I HAD TO WAIT. WHEN I SAW THE WOMAN EXITING THE STALL, I NOTICED SHE COULD WALK NORMALLY. I THOUGHT TO MYSELF, "WHY WOULD SHE USE THAT STALL WHEN SHE HAD SIX OTHERS TO PICK FROM AND I ONLY HAD ONE? AS SOON AS SHE SAW ME SITTING THERE IN MY WHEELCHAIR SHE APOLOGIZED. HAS THAT EVER HAPPENED TO YOU; AND, IF SO, WHAT DO YOU SAY OR DO?
Yes, this has happened to me so many times I've lost count. There are times I say nothing and there are times I say, "Please be more thoughtful next time." In some instances, I would try to educate a person by simply stating, "You know what? You have six stalls to use and I only have one because my wheelchair won't fit in any of the regular stalls." Sometimes giving them a reason why you are upset helps. In most cases the women have been nice and apologetic; but, beware there are those that aren't and become very defensive or just walk away.

HOW DO YOU GET IN AND OUT OF BED?

Transferring in and out of bed used to be easy. I would just transfer from my wheelchair to the bed by placing one hand on the armrest of my wheelchair and the other hand on the bed. Now, because of so many shoulder surgeries and trying to save the wear and tear on my shoulders I have found a new, easier way. I align my wheelchair so it's facing the bed, then I lift my legs up with my hands and place my legs on the bed, making sure my wheelchair is as close as possible. If need be I have to unlatch the foot pedals and move them out of the way. Then I slide in feet first. It’s quite easy to do with very little effort. Getting out of bed is a breeze; I go out backwards. Once I'm seated in my wheelchair, I back up slightly to allow room for my foot pedals to be locked in place, use my hands to place my feet on the foot pedals and I'm ready to roll.

HOW DO YOU GET IN AND OUT OF THE SHOWER OR TUB?
To take a shower, I use two shower chairs. One is on the outside of the shower and one is inside. The shower chair that is outside, I take two of the shower chair legs and place them over the lip of the shower. I transfer from my wheelchair to the first shower chair, and then move my wheelchair out of the way. Next, I slide from that shower chair onto the second shower chair that is inside the shower. I move the first shower chair out of the way by tipping it back, slide the shower door closed, and proceed to take my shower. When I’m done, I do everything in reverse. When I took baths I only needed one shower chair. I would transfer from my wheelchair to the shower chair and then lower myself into the tub. I cannot do that anymore because it takes a lot of shoulder power to lift myself in and out of the tub. As my disability worsens I have had to find new ways of doing things. Learning to accept change is hard but it's something all people with disabilities have to deal with.

HOW CAN YOU HAVE AN EYE EXAM OR DENTAL WORK DONE IF YOU CAN'T TRANSFER INTO THE EXAM CHAIR IN THE DOCTOR'S OFFICE?
My husband has had to lift me into the exam chair in both cases. However, the last time I had an eye exam, the doctor had a special exam chair on rollers that moved out of the way so I could stay right in my wheelchair.  I was thankful to see that my eye doctor was making great strides to make eye exams easier for the disabled.

DO YOU HAVE FEELING IN YOUR LEGS?
Yes. Most post polio victims are more sensitive to both pain and pleasure. The only handicap people that I know that have no feeling are those that have had their spinal cord severed. The level of feeling depends on where the spinal cord was severed.

CAN YOU HAVE CHILDREN?
Yes, I have given birth to my two boys. Both were delivered by Caesarian Section due to the curvature in my spine. There have been many times when people asked me if my children were adopted. That really shocked me but I'm so glad they asked.

WHAT HURTS YOUR FEELINGS THE MOST IN RELATION TO YOUR DISABILITY?

People assuming that we are all the same. What I mean by that is, most people think that because we are handicapped we all have the same problem(s) and that is far from the truth. People look at me like I’m weird because I’m in a wheelchair. Many think because I am disabled that I have no brains; yet, there are some very accomplished handicapped people in this world that are disabled. Go to my Disability Information page on my website and click on the link titled: Famous People with Disabilities. You will see many people with various degrees of disability that are quite famous.

WHAT DO YOU DO IF SOMEBODY IS ILLEGALLY PARKED IN A PARKING SPACE MARKED FOR THE DISABLED?
I have witnessed people parking illegally more times than I would like. Years ago I would approach people and let them know they were parked illegally; but, times have changed and I don't do that anymore. I read an article in the March/April 2008 issue of the Disabled American Veterans magazine which stated there is a site on the Internet at www.handicappedfraud.org where persons are turning in people who they think have parked illegally. This link can be found on my Disability Information page on my website. This organization even has post-it notes that you can purchase for a nominal fee and the post-it notes can be put on the vehicle's front window of those you feel might be violating your rights. The post-it note simply states, “You’ve been reported at HandicappedFraud.org.” In the same magazine it also stated not to approach anyone because they might actually be handicapped and/or might become violent or abusive. Remember just because somebody is not using a wheelchair, a walker, or a cane, they still could be considered handicapped; some disabilities are not visible to the naked eye. Be very careful out there!

I WENT TO USE A LADIES RESTROOM AND IT WAS SO FILTHY. I CANNOT SQUAT OR STAND UP OVER A TOILET TO USE IT BECAUSE I AM CONFINED TO A WHEELCHAIR. HOW DO YOU MANAGE USING A PUBLIC RESTROOM?
I learned years ago to carry plastic surgical gloves and disinfectant wipes in my purse. Nowadays they also have liquid sanitizer that comes in a small bottle that can be refilled. This makes it easy for me to clean the toilet rim. I can't sit on the "seat" because they tend to wobble. I also can’t use those paper covers that go on the top of the toilet seat because I can't stand up and the paper cover rolls up under me when I pull my pants down and back up; I have to lean side to side in order to do that. Sitting on the "rim" is easier and safer for me; but, it can be tricky, so BE VERY CAREFUL if you try this technique!

I FEEL FUNNY ASKING YOU THIS, BUT CAN YOU ROLL OVER IN BED BY YOURSELF?

Never feel funny about asking me a question. Yes, I can roll over in bed; but, I have to sit up first in order to do so. The reason is I can’t move my legs. Instead, I sit up, reposition my legs, turn over and then lay back down. I have to lay on my side; I can't lay on my back or stomach due to a curvature in my spine which makes that very uncomfortable.

YOU MENTIONED IN YOUR BOOK THAT YOU COULDN'T USE THE RESTROOM WHEN YOU WERE A PATIENT IN THE HOSPITAL. HOW CAN A HOSPITAL HAVE ROOMS WHERE PATIENTS CAN'T USE A RESTROOM IF THEY ARE WHEELCHAIR BOUND?

I can honestly say, I do not have an answer to your question. I, like you, would think that a hospital is the one place where each room would be wheelchair accesslbe, but that is not always the case. I don't know what patients do that use scooters; in most cases scooters take up much more room than a normal size wheelchair. Many people, however, who use scooters can stand up and walk a short distance. I have also noticed that some hospitals don't have showers that have grab bars installed to make it safer for people to shower. I don't care if you're handicapped or not, having grab bars in a shower at the hospital when you are weak and vulnerable makes a lot of sense to me; it's safer too. I would go to your local hospital and check things out just in case you are ever a patient there. Remember, speaking out and making people aware of your needs if the key.

HOW DO YOU MANAGE AT A CONCERT OR MOVIE THEATRE?

Years ago when I went to concerts, I was separated from my family which really bothered me. I had to sit in the “handicap” section and the rest of my family sat someplace else. This bothered me so much we didn’t go anymore. The children were young and they didn’t understand why their mommy couldn’t sit with them. Great strides have been made in this area; but, remember every venue is different. I would suggest calling, or going in and talking to a manager to find out if your family can all sit together. As for going to movie theatres, I would rather watch a movie at home. Many movie theatre aisles go downhill, so when I sit there watching a movie I am sitting at an angle and have the feeling that I am going to literally slide out of my wheelchair.  Some movie theatres are now placing wheelchair-bound persons on a flat surface. It's always best to call first and find out the details before placing yourself in a precarious or uncomfortable situation.

I CAN'T IMAGINE HAVING TO SIT IN A WHEELCHAIR 12-14 HOURS A DAY. HOW DO YOU COPE?
I try religiously to get out of my wheelchair around noon and sit in my recliner; I do the same in the evening. This helps to take the pressure off the back of my thighs and having my legs raised also helps the circulation in my legs. The highlight of my day is when I pre-heat my bed with an electric blanket, so it's all warm and cozy when I retire for the evening. To be able to lay down, stretch my legs out, and be in a different position is a great way to end my day.

I HAVE NEVER SEEN ANYBODY ON A GAME SHOW ON TV IN A WHEELCHAIR. WHAT ARE YOUR FEELINGS ABOUT THAT?
I have never tried to be on a game show. I have only seen one person on a game show that was in a wheelchair and that was on WHEEL OF FORTUNE. The gentlemen had a "partner" that spun the wheel for him because he couldn't reach it. Most of the time there are steps leading to the stage area. If you are a winner on WHEEL OF FORTUNE, you have to go down a couple of steps to get to the final spin wheel. On THE PRICE IS RIGHT the contestants are in the audience; and, if your name is called, you have to go up where the bidding begins. If you win, you have to walk up steps to the main stage. On the newer shows like DEAL OR NO DEAL the stage has various levels as well. I have never personally wanted to put myself in a situation of trying to be on a game show and risk being rejected due to my disability.

 I WENT TO USE A WHEELCHAIR ACCESSIBLE BATHROOM THE OTHER DAY AT A RESTAURANT AND I COULDN'T CLOSE THE DOOR FOR PRIVACY? I THOUGHT PUBLIC FACILITIES HAD TO COMPLY WITH THE AMERICANS WITH DIsABILITIES ACT. WHAT CAN I DO?
Accessible bathrooms for the disabled are made bigger so there is supposed to be enough room; but, I too have come across wheelchair accessible bathrooms that I could not close the door for privacy because the stall was not big enough to accommodate me AND my wheelchair.  Even with the laws that specifically spell out how a wheelchair accessible bathroom should be designed, I’ve still come across many that don't comply. Having strangers walk by with the door open is very embarrassing for me and probably for them as well. If you honestly feel that there is a violation, you can go to the manager and/or fill out a complaint form at  www.ada.gov/t2cmpfrm.htm.

THE OTHER DAY WHEN I WENT TO PARK MY CAR IN A WHEELCHAIR PARKING SPACE, I NOTICED IT WAS FULL OF SHOPPING CARTS. I WAS VERY UPSET. WHAT CAN I DO?
Many times I have had the same problem as you described. Some people just don't want to walk the extra distance to put their empty cart in the “return cart here rack” or bring it back to the front of the store. I have learned over the years there is nothing wrong with making our voices heard as long as we are considerate in the way we approach the problem. If we don't let people know there is a problem, then the problem will continue. Next time this happens, go into the store, ask to speak to the manager, and politely explain your situation. I'm sure once you make the manager aware of your dilemma, he or she will keep a closer eye on the handicapped parking space(s); it has worked for me.

IS IT HARD TO PUSH A SHOPPING CART WHILE CONFINED TO A WHEELCHAIR OR DO YOU NEED HELP WHEN SHOPPING?
For years, shopping carts have driven me close to insanity.  Two things make it hard for me to use a shopping cart: (1) There is not a shopping cart that will go straight no matter how hard I try to push it that way. I know I’m at a disadvantage because I have one hand on the shopping cart and the other on my wheelchair. Pushing both at the same time is a challenge, especially when the wheels of the shopping cart lock up. (2) I have to be extra careful while pushing a shopping cart because I cannot see over the top.  I wish somebody would invent a shopping cart that is lower and easier to push for those of us  confined to a wheelchair.  Having my husband or a friend help me shop is always a godsend. There are also many establishments that advertise right at their front door that if you are disabled, they will assign somebody to help you shop.  

WHAT IS THE DIFFERENCE BETWEEN THE TERM DISABLED, HANDICAPPED OR CHALLENGED AND WHICH DO YOU PREFER? 
The Merriam-Webster Dictionary gives the following definition for disabled:  "Disabled means to incapacitate by or as in by illness, injury or wounds."  The word handicap has different meanings; but, in reference to my situation, it means a disadvantage that makes achievement difficult.  In my opinion, difficult is an understatement for those of us with disabilities.  Each and every one of us faces challenges; some are small and some are monumental.  Remember, every person's disability is different; each of us has to find our own way of dealing with our own unique disability. In reference to the second part of your question about the term that I prefer, I don't really care.  Just call me Sharon. I have challenges that I face every day of my life. I am handicapped. I am disabled. I am challenged. I would take no offense with any of these three words to describe me.

WHEN I'M TALKING TO YOU, SHOULD I SIT DOWN?
It is fine for you to stand up during a short conversation.  I feel, however, if there is going to be a longer conversation, then it is nice to sit eye-to-eye. This keeps me from holding my head back in an awkward or painful position for a long period of time while looking up at you, especially if you are a tall person.  I don't expect anybody to get down on their knees, so to speak, especially if we're out in public. Although, at times, people have gotten into a squatting position next to me in order to have a conversation while holding onto the arm of my wheelchair. That is fine with me.

WHEN YOU GET HOME, HOW DO YOU CARRY YOUR GROCERIES INTO THE HOUSE?
Years ago stores used only paper bags.  I could put two full bags of groceries on my lap and wheel myself into the house.  It took quite a few trips depending on the size of my order; but, I got the job done, which is what counts.  Now, today, with plastic bags it is much harder because the plastic bags tend to slide off my lap.  Many times I have to put the plastic bags on my lap and hold the handles in my teeth so that the bags won't slide off my lap. My dentist probably wouldn't like me admitting to that, but I do whatever works.