How inconsiderate!

I always knew there was a reason, lack of wheelchair access bothered me!!

How Inconsiderate!

Manual on wheelchair driving 101

This may be  more of a don’t do as I do, for your own well being! As I’m a bit of a daredevil in my wheelchair. I think its majorly the reason I learned in such a short time to get around in it as well as I do. I amaze and confound everyone by my manueuverability techniques,  (generally everyone expects the worse from women in that way) from doctors to, people in the street.  I think it also has something to do with having a best friend who is a paraplegic for ten years just before I became disabled, as I got used to manuervering his chair.

I only have two real rules for getting about as best as I can.

1) Brute force and ignorance

2) Try it and see.

Around eight years ago, I decided to get a bicycle. I had never had one as a kid, and had given up smoking at the time so figured I would get myself into shape. I can’t drive owing to seizures so it seemed a simple thing to get me around on. However, it didn’t last long, as I had no idea I had this disease then, and often the vague symptoms I experienced which I dismissed was I now know  illness.  But five to six year old kids used to speed past me and leave me for dead, and I was going flat out, but the strength in my legs, plus my balance, meant I never got very far very fast.  EXCEPT, going downhill. I was going down the main busy road in my area one fine sunny day. And I always free wheeled downhill and it was the one time I actually enjoyed being on the flippin’ thing. And a copper, (policman) pulled up in his car, and told me I was going too fast!  If on the footpath/sidewalk I could have seen his point, not in the middle of the flippin’ road though! My dad had hysterics that I nearly got done for speeding on a bicycle! But,  I often in the fine weather wheel myself down to the local shops, which again is all downhill. I probably don’t go far off the speed I was on my bicycle when the copper stopped me. But there again, I AM on the sidewalk/footpath in  my w/chair, so maybe he would have a point.  But its a side road so not likely to have policmen patrolling it very often.  If I hit a hole I would no doubt go flying out of it, but generally I feel perfickly safe freewheeling down to the main road,  though in actual fact it probably could be quite dangerous.  But, I get down their in around four minutes, (its around half a  mile) and then get me a taxi back home as its all uphill.

Being afraid makes us often scared to take chances. Being disabled, can make you more reluctant to. After all–you don’t NEED any more damage or harm to ones body do you?  But, I am a daredevil in my wheelchair, and I admit it. I came a cropper a few years ago, right outside the door of my church at the time after evening worship. I went backwards and completely knackered my back for weeks pain wise, and was on morphine constantly till it started to die down a bit.  And it did make me cautious when going uphill  in case I tip backwards,  I never take unneccessary chances when doing  so.  But apart from that, I’m a daredevil and quite happy about it. Take a chance or become a statistic–of someone who couldn’t do, because they were disabled. No one is going to give you anything in this life–taking a chance is often the only way to get things done.   I think faith can be a bit like that sometimes. You dare to believe what doesn’t seem possible. Yet if you don’t dare to believe, where does that leave you?  Up the creek withotu a paddle, and more than disabled, but dead already.  And as I’ve told folks since I became sick like this. I may be disabled, I certainly ain’t dead yet!  This show ain’t over till the fat lady sings!  (Quiet please!)

 

Disabled-Different-or Dead?

I lived my whole life with this disease lurking, and it affecting me in lesser ways, before anyone knew I had it. I got labelled as schizophrenic at nine years old because of it–which is a common occurence in porphyria, to be labelled with "atypical schizoprhenia"  (You’d think if something is different, as in not regular of most types, rather than labelling something "atypical" they may actually question if it may be or not!) But, five years ago it came out this way. Though thinking back, the signs were there for a year or two before. In other ways, (cognitive difficulties for instance) maybe ten or twenty years.  But, anyone I know, or knew as an able-bodied person, if asked if they would treat someone who became disabled differently, because they are now disabled, they would all have said, "No!" Shocked at even being asked the question by someone even wondering if they could. A bit like somoen may have a disabled child, sometimes, (not all the time) the child is said to be loved and cherished, yet in their hearts, the parents always have regret about the child, in some way, because he’s not normal, or regular like other children. In some cases they see the child as less than other children.  It happens, Discrimination exists just as much if not more against those with disabilities as any other minority.  My oldest friend some years back, he is a paraplegic, and yet he discriminated against those with either mental illness or learning disabilities.  And once, him knowing I was labelled a loon, (schizoprhenic) we were talking, and he said the group we both were going to at the time, was not meant for people with brain problems. Well, always standing up for the under dog, even if it meant disagreeing with my best friend. I said, "Hang on, I have daily seizures and schizophrenia–so I would call that brain problems. Why is it okay for me to go, and not theose with learning disabilities?" His answer of course was, "You’re different!" And he sure got that right! But,  discrimination does exist. Even from the disabled to other disabilities. Most regular disabled folks, would not have a clue about understanding my life. Those who may be paralyzed for instance, or  some similar spinal thing, such as the friend I spoke of above.  There days are regular, they know  mostly waht to expect. And for someone who  never knows on any given day how they may wake up, or even when doing so if they will be able to get out of bed, or if they do if two or three hours later, they will not have taken a sudden nose dive to be quite alot sicker, is a mystery they cannot understand.  As being disabled through illness, is a whole different ball game in some cases to being disabled through sheer disability.  But discrimination exists!

And I thought the friends I had as an able bodied person, would be life long friends. That nothing could divide or set a rift that would change it.  Yet one by one,  in some cases because I am suffering so greatly, and they felt impotent, to know what to do or say, (they didn’t have to say anything. To sit down and mourn with me like Job’s friends did without saying a word would have been enough!) and other varying reasons,  they got more distant.  My disability changed me. And by that happening, it robbed me of any chance of being normal despite my disability. (Relationally).  I did have one friendship, where I made for it falling apart,  and yet its strange that one friendship that I did rock the boat to breaking point, is the one friendship that has at least been restored.) They are still there when no one else is.  But,  even so, I still feel being disabled, has changed everything, relationally,  because of how I seem to not be seen as me, as I was before this disease struck like this.   Disabled people may be different in some ways, in that they have less abilities physically to do things, as people we are exactly as God always made us, and not one iota different! And yet, its changed everything. And yet, if I’d have asked before hand, all the friends I had, if someone you knew suddenly became severely disabled and chronically sick, would you still be there for them as a friend. They would have all answered a resounding yes.  Being disabled doesn’t make us different. Or freaks, or weird in any way. It doesn’t make us less human. In fact our humanity is probably more on display through our weakness.   Its peoples reactions towards and responses to someone who becomes disabled, that makes them different. By taking away what was once normal, and they thought would always be normal. And becoming disabled shouldn’t have changed a thing that way.  Being disabled, is not being dead, or less of a person than you were before.  It simply means you  have many more challenges in your life that others don’t.  And you will sink or swim. Go under or scale over the hurdles. We don’t need others turning the hurdles into mountains,  so that they seem much too steep at times. All we want, is a chance to be normal human beings. With the same longings and desires and needs as any other human being.  Disabled -dead-or different?  You decide, next time someone you know, who was walking about as free as you may be today,  in a month or years time, life suddenly changes by sudden and unexpected disability, that changes their ability but not their person.  You decide if you will treat them as your friend, or,  as someone who is totally different and made to feel abnormal by it.

Ever go places…

Out of neccessity and not want that you really wished you never had to go? And because you are cornered into it, you feel dirty, and as if you’ve been mixing with rats?  I guess a good example would be the MS patient, who cannot get their spasms controlled by medication so goes looking for soft drugs like pot, which is known to be very affective for some MS patients, but they may have to go into the heart of rat land, amongst drug dealers and so forth, not because they have a desire to in regular circumstnaces, but their illness has left them very little choice because the medical community cannot offer them an even half way acceptable alternative to keep their MS manageable.  I hasten to say I  have not been buying pot, or illegal drugs, but did have to walk on the dark side, in other ways, to do with this illness, and I HATE it and somehow ended up feeling unclean, just because I had no choice with this illness managing it day to day. Lord willing it won’t be something I have to repeat in a hurry!

Quote of the day

To be disabled, you are in the hands of others. And if those hands aren’t kind, what a terrible world it becomes." [Henrietta Spinks]

Ain’t that the truth!

Disabled parking sign

Must have taken a real genius to think that one up!

Blue Badge bludgers

I don’t drive a car, seizures have always prevented me being able to drive, but since becoming a full-time wheelchair user I do have a blue badge. It’s sometimes useful when in taxis or when I’ve been somewhere with friends, particuarly for the disabled parking when I was visiting my dad in hospital.  However, the disabled parking scheme has long been abused, overwhelmingly by able-bodied people.  You see people using them, and though of course many disabilites are invisible, you can tell they are not disabled one iota. Others may take gran to the supermarket cos she has a blue badge, and leave gran in the car whilst they go shopping but they feel because they took gran with them, they were entitled to use her blue badge.  Of course the most common thing is for a driver with no blue badge to park in a disabled parking bay anyway, leaving a disabled person nowhere to park.

Now these blue badges are actively being targeted for being stolen from disabled drivers vehicles when parked.  It saves someone perhaps ten metres access wise so its not a huge benefit to steal them or use them fraudulently.  I don’t need very near acess really, though are entitled ro a blue badge because of being a full time wheelchair user. But I may not need near access as much as someone who walks about who has a serious heart condition, and can only walk a few feet.  Their  lives are literally being put at risk, by the blue badge bludgers.

Since this fairly new crime of actively stealing blue badges has perpetrated itself onto the scene, it really shows how society devalues life, particuarly perhaps those who are considered as less than equal because they are diabled. If disabled in my country, you are definitely a second class citiizen in many ways.  But, who is some beauracrat in a tie, or some rogue out to make a few quid off the back of disabled parking badges to put a value on mine or other disabled peoples lives?  Quality of life would be great for all of us, if it was possible. But theres no need to devalue tt any further than being a disabled person does already in many case.

I want choices

Losses accrued over time can leave us pretty barren and bankrupt. If I was to list all the losses since first becoming ill a little over five years ago, it would either sound like a pitch for symptahy or sound full of self-pity because of how my heart bleeds when I think of it  But they  have been enormous, the last of which the major ones was my dad just under a year ago. And his going left me totally alone with no one of my own.

I lie in bed sometimes, when iller, and its a hard place to be. Bed bound in the house alone without any help or care. But I still have some control and say in what I do or don’t do, and what decisions I make about my future. My biggest fear in this disease is the unknown. And Christ told us to not carry tomorrows troubles today, but all of us sometimes struggle with this. What if I had a stroke? How would I continue to be fed spiritually?  What if I end up a drooling vegetable, surrounded by people and everything unfamilar.  Change has become inordinately hard these last few years, and nothing I was recognized about my life is no longer true or in the least bit familar to me as life as I have always known it. I may have always had severe health problems, but I still had a life and energy and something to give and a useful part of society. Yet discrimination and carelessness often as a disabled person with a chronic illness that even doctors don’t understand so how can friends and relatives? will often leave you  a redundant member, someone who is shut indoors spoken of but not seen very often.  Its all hushed up as this extent of  illness. is often not pretty, and often a remidner to one and all of our mortality and what could await any of us iwthin the next hour if we are called Home.  People very often fall into two types. The one who is well intended yet misguided, and often tries to get you to do things as your own private occupational therapist advisor thinking it will do you good, yet not having a clue how much it will cost you in your health and is often just physically beyond you, so they end up seeming very patronizing and overbearing.  The other type are the ones who say "we are praying for you" as if that has fulfilled all obligations to you being part of Christ’s body and all its actually done is appeased their consicnes while you suffer terribly with illness but even more so from being alone almost continuously in it.  Things that are familar to me now, even if it kills me in some sense, with grief, have a strange kind of comfort to them, just because they are familar and I still have control and independance and a say in my future. But if I ever get to the drooling vegetable stage, in a strange environment and nothing that is now familr, familar then,  well I hope God doesn’t keep me long in those circumstances if they happen.  I dont’ want people to talk to me like I was a baby with no understanding,  and rob me of any choices that being human allows us to have. I don[t want to stare at a wall for day  upon day, with  my mind slowly decaying within my skull, because it has no real stimulation and nothing of a spiritual nature. I dont’ want people to assume if I can’t communicate well that I am neccessarily without understanding or ability to understand.  I don’t want to be treated like someone whose a shilling short of the full quid.  I want to live while I have breath in my body, in whatever capacity that body may be in. At least as fully as it will allow me to, and that decision not removed by others in authority who may mean well but I’m just a statistic to them, whose wants, desires, hopes and the longings of my heart whatever they maybe at that time, are not taken into consideration.  If I want to go sky diving out of an aeroplane  if medical help becomes avaialbe to ease my symptoms some, I don’t want someone saying no you can’t do it cos you’re too sick.  If I want to  to go horse riding I don’t want well intentioned people who don’t know me, sa\y you have seiz\ures so its not wise. I want the chocie, the choice to live as anyone else, with as much independance and rights as a human being as anyone else. And that includes up to and if my brain is ever damaged in a major way that may diminish some of my mental capacties.  I’m still giong to be me, inside that shell that is whatever it is at the time. I want human dignity the same as anyone else. A right to live a right to love and a right to be alive as much as anyone else and not feel I should have to apologize or exist as a second class citizen because  my body has become a useless wreck.

I want choices

Losses accrued over time can leave us pretty barren and bankrupt. If I was to list all the losses since first becoming ill a little over five years ago, it would either sound like a pitch for symptahy or sound full of self-pity because of how my heart bleeds when I think of it  But they  have been enormous, the last of which the major ones was my dad just under a year ago. And his going left me totally alone with no one of my own.

I lie in bed sometimes, when iller, and its a hard place to be. Bed bound in the house alone without any help or care. But I still have some control and say in what I do or don’t do, and what decisions I make about my future. My biggest fear in this disease is the unknown. And Christ told us to not carry tomorrows troubles today, but all of us sometimes struggle with this. What if I had a stroke? How would I continue to be fed spiritually?  What if I end up a drooling vegetable, surrounded by people and everything unfamilar.  Change has become inordinately hard these last few years, and nothing I was recognized about my life is no longer true or in the least bit familar to me as life as I have always known it. I may have always had severe health problems, but I still had a life and energy and something to give and a useful part of society. Yet discrimination and carelessness often as a disabled person with a chronic illness that even doctors don’t understand so how can friends and relatives? will often leave you  a redundant member, someone who is shut indoors spoken of but not seen very often.  Its all hushed up as this extent of  illness. is often not pretty, and often a remidner to one and all of our mortality and what could await any of us iwthin the next hour if we are called Home.  People very often fall into two types. The one who is well intended yet misguided, and often tries to get you to do things as your own private occupational therapist advisor thinking it will do you good, yet not having a clue how much it will cost you in your health and is often just physically beyond you, so they end up seeming very patronizing and overbearing.  The other type are the ones who say "we are praying for you" as if that has fulfilled all obligations to you being part of Christ’s body and all its actually done is appeased their consicnes while you suffer terribly with illness but even more so from being alone almost continuously in it.  Things that are familar to me now, even if it kills me in some sense, with grief, have a strange kind of comfort to them, just because they are familar and I still have control and independance and a say in my future. But if I ever get to the drooling vegetable stage, in a strange environment and nothing that is now familr, familar then,  well I hope God doesn’t keep me long in those circumstances if they happen.  I dont’ want people to talk to me like I was a baby with no understanding,  and rob me of any choices that being human allows us to have. I don[t want to stare at a wall for day  upon day, with  my mind slowly decaying within my skull, because it has no real stimulation and nothing of a spiritual nature. I dont’ want people to assume if I can’t communicate well that I am neccessarily without understanding or ability to understand.  I don’t want to be treated like someone whose a shilling short of the full quid.  I want to live while I have breath in my body, in whatever capacity that body may be in. At least as fully as it will allow me to, and that decision not removed by others in authority who may mean well but I’m just a statistic to them, whose wants, desires, hopes and the longings of my heart whatever they maybe at that time, are not taken into consideration.  If I want to go sky diving out of an aeroplane  if medical help becomes avaialbe to ease my symptoms some, I don’t want someone saying no you can’t do it cos you’re too sick.  If I want to  to go horse riding I don’t want well intentioned people who don’t know me, sa\y you have seiz\ures so its not wise. I want the chocie, the choice to live as anyone else, with as much independance and rights as a human being as anyone else. And that includes up to and if my brain is ever damaged in a major way that may diminish some of my mental capacties.  I’m still giong to be me, inside that shell that is whatever it is at the time. I want human dignity the same as anyone else. A right to live a right to love and a right to be alive as much as anyone else and not feel I should have to apologize or exist as a second class citizen because  my body has become a useless wreck.

If a wheelchair user

Its a little known fact, that if you are  a full time wheelchair your stature decreases and you reduce in height. Tho it probably applies worse or  more for people who cannot stand or walk at all such a paraplegics. But I think must have happened to me too a bit during the last years, esp in light of because of what my body is doing my spine is curving,  and I only started out at five feet 0 inches to start with!! People I know in actual life who I  have only known since becoming disabled,  are amazed when they know how small i am when I used to walk about, as I am one of those folks who only looks short when stood up! But, five feet 0 was okayish, tho not great, 4 feet whatever I may well be by now?  Not so sure that’s so ok!