Tag Archives: wheelchair

Time is Control?

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They say ‘time heals all wounds’. Well I’m here to tell you it ain’t so! Time gives you a different perspective on events, a means to distance you from the pain. Is it a cure for the pain? No. Time is a concept that was created by individuals to label and control the changes that happen throughout the course of their lives. So, time is a means of control. Curious. Does that mean that giving yourself ‘time’ to get used to an idea is actually giving you control over that idea? Well, yes.

One of the most difficult issues people with disabilities have to contend with is the loss of control. We cannot control our bladder, our legs, perhaps our lives. For anyone that is used to working and living independently that is a horrific situation. But if ‘time’ is really ‘control’ then we can take back what we lost: control. It just takes time. Let me explain. I can no longer walk. My legs do not work. Over time I have come to accept that. This, however, does not mean that I can no longer do what I once accomplished by walking. Getting from one place to another does not have to be done on the soles of your feet. It can be accomplished on the tires of a wheelchair. Because I can no longer stand I cannot reach an item on my kitchen shelves. I employ the use of a ‘reacher’ which increases my reach my several feet. I once again have control back.

What we have to accept is that things have changed. Now, we can give up any control we have, go into an institution and let someone else decide the course of our lives or take back control. Yes it will take time. But nothing of any real importance was ever easy. Take the time, take control.

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What is it all about?

VISTA 2When I was first diagnosed with MS my first thoughts were of me. I was too busy to deal with this nonsense, I had work to do. Eventually of course I realized that I really didn’t have any choice in the matter. Then I was concerned about how my family and friends would deal with this disease. That was an eye opener. Fortunately my family was and is extremely supportive. My friends at that time were not. I got new friends. Over the years my focus changed from me to my family and then to work. Would I be shunned by my co-workers? Well I could never have wished for a more supportive group of people from every level. Yes there were individuals who didn’t want to have anything to do with me but that was rare.

Now I am on disability leave and I still have responsibilities. Yes I am responsible to the world at large to try and live an accountable life but more important is what I contribute to that world. When I became disabled I joined an elite group of individuals who are forced to look at the world slightly differently than the average person. We are in a position to identify problems with accessibility that benefit more than one specific group of people.

When a ramp is in place it is usually used by more than just wheelchairs. It is the responsibility of every intelligent individual to try and correct the problems that exist. If you are approached by someone who can make a difference you must help. As a very visible group we must do our part to get the message to those who have eyes and cannot see, those who have ears and cannot hear and those who have but who do not know how to share.

And now for the downside. You will have those days when the entire world isn’t worth it, when life is not worth living and all you want is the ultimate peace. Sound familiar? Well, it is part of living. The trick to surviving those days is support. I am not talking about the medical professionals, I am talking about family and friends. Do you have people around you that will listen when you rant and cry and basically be a needy victim? You MUST have that kind of support. Everyone has to be able to be weak at times. Strength helps when dealing with adversity but we all need some down time. A true friend will let you blubber all over her silk blouse and still want to help. I have a friend like that. I have a family like that. I am incredibly lucky. I guess that is why I have lasted as long as I have. That and the fact that I am a feisty wee bitch.

If using Aunt Maisie’s peach preserves on your morning bagel makes you feel better, then kiss Aunt Maisie and load up on peach preserves.

I believe one way to fight any disadvantage, any disease, is to embrace it and work with it. Don’t ignore what is happening to you, accept it and try and to adapt your circumstances. Don’t spend your time worrying about what you cannot do, relish the things that you can. So you are unable to walk, does that mean you never go out? NO! I don’t walk, I scoot or I roll.   I get from place to place I just don’t put one foot in front of the other. (And yes I still refer to it as going for a walk!!) Simplistic? Yes. But isn’t that what living is all about?

I am a Nester

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What, you ask, is a Nester? Well, in the parlance of a baby boomer I like to stay put. In my 20s and 30s I enjoyed travel. I have been whale watching off the east coast of Canada and I took a cruise to Alaska from the west coast of Canada. I have flown overseas to England and Northern Ireland. I have been south of the Canadian border into the United States. I loved every minute of it. Or at least I have fond memories of it all.

I have lived at my present address for more than twenty years. I intend to live here for another twenty, give or take. I am content with my life, mostly. I still have my moments of exuberance, just not as many. I am now in my 50s and the thought of getting on a plane leaves me cold. I used to love the preparations for a trip. When I went on a week-long canoe trip into the wilds of the Canadian north I knew I would be carrying all my gear so I packed accordingly. I never for a moment skimped on my comfort but I was judicial with my choices. It was the same when I flew overseas. Hours on a plane do not have to be horrid even in coach! Of course my flying was all pre-911. I am pretty sure the spritz bottle of water I used to hydrate on a long flight is no longer allowed. To bad, it was really refreshing.

I still fantasize about a trip to New Zealand or some unexplored island in the middle of the ocean. But the reality is that I would rather do it vicariously. I like my home. I like staying put. I am lazy. Yes I am putting that in print, I am lazy and I like my creature comforts. I like my tea. I like my pillow. I like my bathroom.

I love travel shows on TV. I love reading about other people’s experiences. I once went to New Zealand via the Internet. I planned it all right down to the correct flight numbers and hotel rooms. I even got pictures through Google Earth of the different activities I “experienced”. I wrote it as a diary in real time. It was a blast. An armchair vacation.

Actual travelling now would require a whole new set of variables. There is the wheelchair, an attendant and lots of other non-comfortable items that go with my disease. Yech! But in my mind I am young, able bodied and eager for adventure. Now that is the way to travel! I should be planning my next armchair vacation . . .

 

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The Experts?

 

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I know, I know, I am just a poor slob who carries around my own stumbling blocks.  But I am intimately involved with those stumbling blocks.  I am in a wheelchair.  I have used a walker, canes and a scooter.  I think I am perhaps more aware of what the benefits and problems are with each aid than some of these ‘experts’ appear to be.  My scooter was wonderful.  It was comfortable, had a great basket for shopping and it is no longer available to purchase.  Why?  It is, was, the most inexpensive of all the scooters I could find, it is one of only a few scooters that has the basket attached to the body of the vehicle as opposed to the tiller.  If the basket is attached to the tiller then the weight of anything you put into the basket is transferred to the tiller.  As the tiller is used to steer the scooter, steering becomes very stiff.  Lack of control is simply an accident waiting to happen.  The ‘experts/designers’ must have realized this because the baskets are very small.  I could maybe get a carton of milk and a loaf of bread in some of them. I guess this means the users of these vehicles are not supposed to do any shopping.  Ah yes, another vote for independence.

I am now using a power wheelchair.  They do not have any baskets.  I have been told that I can put anything I buy in a bag on the back of my chair. If I were a contortionist that would be an option.  I am not.  On my first chair I developed a solution.  You see I may have a disability, but I am not without some intelligence.  There may be those that disagree but we will talk about them later, much later.  Back to the basket.  I took a bungee cord, a little one, and attached it to the chair just behind my footrests.  Then I took a basket and placed in on the footrest and on the bungee cord and voila! A shopping basket.  Now I can go shopping when I want or take it off and go without.  AND I CAN DO IT ALL BY MYSELF!  Now that is independence.  Everyone told me that a power chair would allow me to remain independent.  They didn’t mention that as long as I had someone to do my shopping.  I just added that remark to the YEAH RIGHT column and deleted it with the rest of the garbage. My second chair was modified by a friend based on my designed and is even better. A small shelf was attached to the chair just above the footrests.  When not needed it tucks out of the way.

Are you getting the impression that there is a conspiracy to keep the undesirables down?  Silly thought.  There are those who may consider me an eyesore but I do not believe it is because of my disability.  I think it is just their inability to see.  They are not blind just really, really dense.   With the cost of everything for those with a ‘disability’ so expensive it is no surprise the makers of these devices want to keep the lucrative market to themselves.  If everyone were able to purchase items that were made to last and had all the right devices on them, the market would collapse.  Yep, my cynicism is just bubbling to the surface here.  I deal with a store that services my equipment and they have tried to explain problems to the makers and were rebuffed.  Even when the makers were wrong, they would not admit it and correct the problem.  How sad.  I am sure there are good people out there but it is sometimes tough to find them.  When I find something that works, I hang on to it.

That philosophy just never worked on men!

Adaptation works . . .

 

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I hate the word can’t. Can’t, can’t, can’t. Recant, vacant. It is such a negative word, a harsh word. Unable or incapable or even cannot is preferable.  Of course can, able, or capable are even more preferable.  It is amazing how words can encourage us or even discourage us.  Something as simple as a sound, vowels and consonants have the power to move us.  A rousing speech made by an honest Politian, (and you thought I didn’t have a sense of humour) or music, good music.  Music that we think is good.  It doesn’t matter what anyone else thinks.  Music, like Art, is very personal, even visceral.  It is almost impossible to explain to another why a particular piece of music, or art, moves us.  It doesn’t matter, if it touches you it can be used to benefit your situation.  Anything, almost anything, that makes you feel good about who you are, is something you need in your life.  As long as it doesn’t harm another and it is legal.  I will not condone something that is illegal.  At least not openly.  Shhhhhh.

 

When I was a kid I was terrified of everything.  I wanted to disappear into the wall, not be noticed by anyone.  I was sure everything I said would be wrong and I would embarrass myself.  It didn’t help that I am a red head, everyone else usually had blond or brown hair.  The result was that I got noticed.  I also blushed easily with made me a target for a great deal of teasing.

 

When I was in High School I discovered the Drama Department.  I went to my first audition as a favour to a friend, sort of moral support.   I ended up getting a small part.  I was hooked.  I could hide behind a character with impunity.  Actually I played a hooker without having to hook.  The point is I could address the world using someone else’s voice and mannerisms. I was safe.

 

Having a very visible disease means that one gets noticed.  I am in a wheelchair, it is tough to go anywhere incognito.  So I have adapted.  I am no longer afraid of everything.  I will always be afraid of some things but most people have a fear or two they hide away. Now I feel I have a responsibility to speak out because so few do.  I may no longer contribute in an official work capacity but I can still contribute with my words.  I will add my voice to the faint chorus of those who lobby for the inalienable rights of those with disabilities.  And honey when I get miffed . . . let the others beware!

Entitlement

 

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According to Wikipedia an entitlement is a guarantee of access to something, based on established rights or by legislation. A “right” is itself in entitlement associated with a moral or social principle based in concepts of social equality .In a casual sense, the term “entitlement” refers to a notion or belief that one has a right to some particular reward or benefit[1]—if given without deeper legal or principled cause, the term is often given with pejorative connotation (e.g. a “sense of entitlement”).

Now at its core entitlement is a good thing.  It ensures that those who are the most vulnerable will not be forgotten by society.  The downside is that when some people get a sense of entitlement it can often be used to browbeat everybody else.

I have an itty bitty incurable disease.  I am in a wheelchair.  I am unable to work because of said itty bitty incurable disease.  I am not entitled to be a jerk about it.  There are those in similar circumstances that believe because they are in an uncomfortable situation the entire world owes them.  It does not.

I have met more than a few people who believe that if you are able-bodied you need to kowtow to them.  I know a woman who thinks it’s beneath her to say please and thank you.  She’s quite happy to order everybody around because you see she’s in a wheelchair.  She doesn’t like me.  I point out how rude she is being.  I never said I was a nice person!

Every single individual on this planet is entitled.  We are entitled to think, to breathe and to communicate as we see fit.  We are not entitled to denigrate, to condescend or to judge anyone else.  There are people who don’t believe they are entitled to anything and I disagree.  We all come into this world exactly the same way.  An egg and a sperm walk into a womb and the baby is made.  After a whole lot of crunching and groaning a little one breathes air and the journey begins.

I believe that all children are entitled to happiness and to love but unfortunately it doesn’t always work out that way.  Hopefully by the time they reach adulthood they recognize that they are entitled just like everybody else.  And just like everybody else they are constrained by the laws of the land, of morality and of good sense.

 

Is anybody home?

 

I would like to share an amusing anecdote with you.  Let me explain how it all started.  I recently read an article about a couple of staff reporters for a newspaper (a large one) who decided they wanted to see just how difficult it was for people in wheelchairs to access fast food establishments.  It seems to have been quite an eye opener to them. According to the article there were very few places that were accessible. I guess the assumption is that people in wheelchairs only eat healthy food.  Fat chance, we like burgers and donuts the same as anyone else.   I applaud the effort of these reporters.  Now let us see if anything comes of it.  One of the places mentioned is a large chain and their President claimed that ALL their outlets were fully accessible.  There is one of those places near me and I remember it as being inaccessible.  Actually they have a great ramp outside but the door opens onto the ramp making it impossible to enter the shop.  It seems the second door, which would allow for entrance, was always locked.  After discovering that several years ago I never went back. I was planning on writing a scathing letter to the CEO but I felt I should be absolutely sure before I did.

I went to the shop.  I went up the ramp. I tried the door.  The second door was now unlocked.  It was fully accessible.  No letter.  Ah well. I was looking forward to sampling the food.  What happened next I could not have made up.

Because I am sitting in a wheelchair I am shorter than most adults. In this shop the donuts are on shelves behind a rather high counter.  I couldn’t see the products because the counter was in the way so I asked if they had a list of the choices.  Two young women looked at me as if I had three heads (I don’t!!!) and said nothing.  I asked again, they looked at each other and told me that everything was laid out at the back for me to choose.  I must admit that at this point I became convinced I was not dealing with geniuses.  I explained that I was in a wheelchair (duh!!) and that I could not see the back wall because I was sitting down (DUH!) and could not see over the counter.  I asked again if they had a list.  At that point I asked if they knew what a list was.  I am not the most patient person I know, not even close.  At that point a young man finished with a customer and handed me a list.  He said it was not complete but that he would try to help.  Finally, the brains of the outfit. I looked at the list and made my choices.  Satisfaction.

I have to wonder if it was the chair that intimidated those two women or the fact that I asked them a question they were not prepared for.  These were not small children.  They were young, attractive women.  I do not think of myself as intimidating but then I am also not a meek, wallflower.  My strength is the result of necessity.  I will not sit and wait for someone to find a cure or to rescue me from the horrors that exist in this world.  Honey just get on with it! Places to go, people to see, toes to . . . oops!

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Legal Loopholes!

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Ah yes, we all love those loopholes that allow us to get out of doing things we really do not want to do.  Examples are rampant in our highly technical, morally questionable, honourably deficient society.   I recently tried to get into a local shop, a nice store I would have enjoyed browsing through their products.  Unfortunately their front door is only 27” wide.  My wheelchair, with the added pouch on the side, is 27” wide.  Do you see the problem?

By law, all stores built or modified in the last few years must have an entrance that is 33” wide.  This is to provide suitable access for wheelchairs.  Yeah right!  The law may say 33” but they don’t really mean it.  Actually the law states that there must be A door that is 33” wide, not necessarily the front door.  In the case of the store I wanted to get into, their side door meets the code but there is a wee problem.  That door is accessed from a lobby that is first reached through a very heavy front door.  Then because space is at a premium they pile ‘stuff’ around the entrance that is now impassable.  I was forced to call for assistance to even get into the store.  Then to make matters worse the entire store had aisles about 24” wide because of more ‘stuff’ on the floor.  AAAGGGGHHHH!

I realize that I am in the minority.  I realize that the main goal in some people’s lives is the acquisition of sizable amounts of currency.  Having to accommodate a small minority of people who really don’t complain all that much, is a bother.  So people usually don’t change unless they are forced to.  And who is going to do the forcing?  There isn’t anyone. One voice is not all that intimidating when there is nothing to back it up.

There are groups out there who say that they are advocates for those with disabilities, and they are, for the big things.  But who is there to fight for the individual with what amounts to a minor problem?  I haven’t found anyone.  Those agencies I have approached have always said that their concern is the big picture.  Well this is a wake-up call. I am part of that ‘big picture’ which is made up of a whole lot of ‘little pictures’, a mosaic if you like.  It is the ‘little pictures’ that will form the foundation for the ‘big picture’.

Let me restate that.  If you ignore what is happening to the individual and focus only on the laws and by-laws to change peoples’ attitudes then you will fail.  You cannot force someone to do what is right, after the fact.  They will spend a sizable amount of time and money to find the loopholes that will allow them to circumvent the law, legally.  If you instill a sense of pride in doing the right thing early on, then you will have people who will offer to do what is right without it being forced down their throats.  That is something to encourage.

 

Etiquette

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Good manners at any time and in any situation just makes good sense.  Proper etiquette for wheelchairs and scooters is a must.  As individuals we are ambassadors for all people with disabilities.  The way in which you behave may make someone look at another in a similar situation a little differently.  It could be for the worse but it could and should be for the better.  First and foremost, running over another’s feet is considered very bad manners.  In a crowded room it may be disregarded because of the volume of potential victims. But you really can avoid the situation if you try.

When someone approaches you with the intention of giving you a hug or a kiss may I strongly suggest you turn the power OFF if you are using a device with power.  It is a little difficult to explain your sudden departure through the nearest wall when a well-wisher taps your controls.  Don’t laugh, it has happened to me and the poor friend felt awful.  No real damage was done but another person standing nearby did walk a little funny for a few days.

If a stranger approaches and asks if they can help you, (say you’re shopping in a store), do not take offence.  This may be someone who genuinely wants to reach out to another human being and assist.  If you were able-bodied and needed help, I hope someone would be there to assist you.  If you do not need assistance just smile, say thank you and decline their offer.  Perhaps chat for a moment or two, one human being to another.  If you can use the assistance, accept it politely.  The best way to educate other people on the correct way to treat someone with a disability is to be pleasant.  You can be quite self sufficient while graciously accepting assistance when necessary.

When a child approaches and asks why you are in a chair, be kind.  This young child could one day grow up to cure the world of some dreaded disease.  Be aware that what you say could be forgotten in an instant or remember for a lifetime.  TELL THE TRUTH.  I have never believed in telling lies because it is easier.  However giving a six year the specialized ramifications of an exacerbation doesn’t make much sense either.  I have had several conversations with children and by extension their parents.  They usually went something like this:

 

child:           why are you in that chair?

me:              because my legs don’t work very well

child:           why?

me:              because I got sick and my legs got weak

child:           does it hurt?

me:              no. I just sit down a lot

 

I find a smile and a genuine interest usually appeases the child and the parent.  The parent at this point is often trying to drag Suzy or Joey away while apologizing to me.  I tell them that I welcome the honesty of a child’s questions.  And I do.  Adults are either afraid to ask so they don’t look you in the eye or they are ghoulishly trying to get ‘the dirt’ so they can gossip later.  Occasionally you do meet people who don’t care about the chair or the disability.  Those are the people I prefer.

How do you deal with those people who condescend and discriminate?  Well, toe squashing is an option but that is bad etiquette. You can explain succinctly that their behaviour is not appropriate or my personal favourite: loudly inform them that you have a disability, you are not stupid and they should stop treating you as if you are.  That does get a few looks. And yes, I do feel a certain amount of satisfaction.  Of course it is necessary to know your audience.  Some people are dense enough that they will not understand what you are saying.  Some people just need a gentle nudge; they don’t realize they are treating you inappropriately.  Take the time to understand them before you respond.  Most people are not malicious, just ignorant.

Finally, stop thinking of yourself as a disabled person.  Think of yourself as a person.  Hold your head up in public and be proud of who you are.  Show confidence to the world.  People will respond to how you treat them.  If someone condescends to you, explain how that behaviour is unacceptable.  Do it pleasantly and with respect.   Now who is behaving appropriately?  If you go out into the world with a smile on your face and in your heart you will meet pleasant people.  If you are miserable you will find just that.  Life is too short to be miserable.

 

A Time For Change

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No I am not talking about changing your politics or changing your underwear . . . although . . . never mind.  I am talking about changing attitudes.    Not everyone has a problem with people who are different, just a notable minority. That process of changing their attitudes is on going and never-ending.  Where we can make a huge difference is in ourselves, our attitudes.  Yes we are ambassadors for everyone in a wheelchair but we are also ambassadors to ourselves.

I have often joked that the legs at the end of my hips weren’t mine. They certainly were not acting like we had any kind of relationship. I couldn’t walk, I couldn’t stand and if I wanted to move my foot I had to use my hands to do it.  Ever since I was told that I needed to give myself permission to fail occasionally I have been rethinking my legs.  Because I have no other legs to change to I will have to find a way to get along with the ones I have. As a parent did you ever have a child that would not listen to you, would not obey any rules you laid down? Those without children, did you ever have a dog that refused to come when you called?  Well my errant appendages are like that.  Did you stop loving your child or your dog because of a difference of opinion? No, you found a way to make it work.  I have an arm that is awkward to use.  It doesn’t open properly and I can’t straighten it out fully.  So I do more things with my other arm.  I adapt.  People are capable of adapting to almost any situation it just takes time and effort, and a lot of thought.

I spoke to a man once who had lost one leg to diabetes.  He was inquiring about buying my van.  During the course of the very pleasant conversation I learned that he had just recently lost his leg.  I was surprised.  My illness came on me very slowly over a period of years.  He went from two legs to one in a matter of minutes.  I don’t care how much you prepare for such an event it must have been traumatic. This man was upbeat, laughing, totally in control.  He had made peace with his situation and was in the process of adapting to it.  This man was and is an inspiration to me.  Here I am frustrated with my legs and he is moving on with his life.  I must admit I was a little ashamed of myself.  I can get hung up with such unimportant things.  I am a well-adjusted (sort of), intelligent woman.  I can adjust when I need to, it just takes a little effort.  And perhaps a change of attitude.