The WordPress.com stats helper monkeys prepared a 2012 annual report for this blog.
Here’s an excerpt:
The new Boeing 787 Dreamliner can carry about 250 passengers. This blog was viewed about 1,300 times in 2012. If it were a Dreamliner, it would take about 5 trips to carry that many people.
It’s published twice a year, always with a fanfare. To some it’s an ‘exclusive club’ they have no wish to read about, or care who belongs to it, for others, they think they should be part of it and moan when they’re not granted access, or at least, the ‘honour they believe they’re entitled to. It it, and always has been something that has to be earned. Arguments could rage from now until kingdom come whether so-and-so has done enough to achieve their particular honours, or whether they should have been given more, or less.
Paralympians have been complaining they have to do more to be given the same titles as their non-disabled counterparts. or that they haven’t been given the title they deserve. I’m unsure how I feel about this. Perhaps it’s right that they raise the subject, otherwise others are unaware discrimination continues, or perhaps it just sounds like sour grapes. I guess I’m somewhat indifferent to it. For me, it’s just a fact of life that we, as disabled people have to fight harder to achieve the same recognition. However, looking at it slightly differently, the same could be said over and over again. We, as disabled people have to fight harder to survive, as babies. Our parents often had to fight hard to get diagnoses, treatment, equipment, help, the list goes on. We have to fight harder to learn to walk, or to get around, however that is, we have to fight harder to achieve as school, because we could be behind our peers to begin with, whether that be physically, intellectually or because we need more time off school for hospital appointments illness, or treatment such as physiotherapy. I vouch for no two disabled people having the same opinion on whether they felt they had to fight for these things or not, or whether they felt ‘ordinary’; no different from their peers to begin with, and therefore starting from a level playing field to begin with. There’s an argument to be had as to whether we should be taken out of school for things like physiotherapy or whether it should be separate from school altogether. However, I digress. I’m trying to say, that although Pearson and Weir may have a valid argument, it might be the case that we as disabled people always have to fight harder for the same things, and as such is a fact of life.
However, the other argument is that it could seen as bad manners to be complaining thus, seeing as it’s just that, ‘an honour’, something earned, not achieved, a fact which Dame Sarah Storey was quick to recognise. (though I now can’t find a clip of her saying it!). It’s also true that some Olympians have more recognition than others, and the same goes for Paralympians. I had no idea Para-equestrian wonder-woman Sophie Christiansen had been made an OBE, (alongside the better known Ellie Simmonds) until I started searching for news articles before I wrote this post.
Christiansen is a personal heroine of mine, has cerebral palsy and a first in maths, of all things. In para-equestrian terms, she competes in the grade I a classification, the ‘worst’ level of disability. Unable to keep her feet in irons due to constant spasms, it is fascinating to watch the ways she works with her horse. Even more incredible when you realise that every horse she competes with is on loan, but that she has the ability to get the best out of each horse she borrows. All the more remarkable she achieves what she does, and therefore, more deserving of her honours than those who can afford the horses, staff or equipment they need. I hope one day to be able to post that Christiansen has been made a dame, until then, I must be content that Paralympians are at now least achieving recognition for their achievements, even if it’s not quite on the same level as their peers.
This post is in answer to the daily post from 28/12/12. I LOVE books. I have several on the go at once. A few months ago I saved up vouchers and put them together to buy a Kindle 4; this model is the last of the simple ones. I love it! It makes it so much easier to have several books on the go at once, and still know where I’m at with them all. I did used to read a lot of romances, but these days they don’t have enough bite for me. I love a good autobiography to really get lost in someone else’s story, to feel what they feel and ‘walk in their shoes’.
Recently though, I’ve been downloading different kinds of books. I saw a daily devotional book on the psalms at my friends house which looked good, so I downloaded that along with C.H. Spurgeon’s thoughts on the Psalms. It is worth persevering with the language, because some of what he has to say is extremely pertinent, just right for today, and can often make me think.
Apart from that, there are a few others which have really made me think recently. One of those I do not wish to mention here. Others I am reading in preparation for my next article for Bible Reflections. That just leaves one more book, by Jerusha Clark called “Every Thought Captive” which encourages women to think about their thought life. It’s an odd thing, thinking about what you are thinking about, but a necessary part of discipleship, as previously discussed here, in my previous article for Bible Reflections. I started the book when I started thinking about that particular post, but it was something on my mind that I felt I had to do. It’s something I really struggle with. Also, I think it’s appropriate at the end of the year to take a bit of an inventory of the year gone. I’m not sure if I agree with setting arbitrary goals for the year ahead. However, I feel if I do not examine where I have been, how do I know where I’m going, and how do I learn from many) mistakes? I’m really just at the start of this journey of considering my thought life, but one of the author’s opening thoughts really struck me:
Often it’s easier to believe that we’re worthless and weak than it is to truly accept that in God we are incomparably valuable and girded with matchless strength.
I’m still wondering why that is. I think it is to do with how hard it is to change our way of thinking. It is easier to worth with how we have always been than to make the effort to change. This particular thought has swirled round in my mind for weeks. I’ve been unable to move on. This has stung me again and again. There’ll be more thoughts on this book in the coming months. If you are starting to think about what you think, I’d really recommend it.
Dear Readers, if there should happen to be any of you left, once again I apologise for the lack of posts in recent weeks. For the moment, my need to sleep is greater than my need to write. Well, this is generally true. Fortunately, this morning at least, my need to write is greater than my need to sleep. This is somewhat concerning given I have an appointment at 9 am. (All attempts to request extra consideration within the unbending appointments system have gone unnoticed, so I continue to have to make my best superhero(ine) effort to make it anyway.
Talking of heroines, I’d like to draw your attention to the latest little fighter to make the headlines, a baby girl called Maddalena, born at 23 weeks weighing less than a pound. There are several things unusual about this mites story. Firstly, that she was born at 23 weeks. This is significant given that threshold at which life is considered to be viable is 24 weeks, but this one was born at 23 wks and two days. When babies are this early and this small, every day counts, which is why being 5 days short of 24 weeks is worth reiterating. The second unusual thing about this story is that Maddalena ‘s story was introduced as a miracle of miracles, not only was she born at 23 weeks, and therefore considered ‘unviable’, but she was saved by a pair of scissors. At first this was puzzling, but it transpired, that a pair of scissors were found in the bag which contained the infants tiny body, so ‘experts’ thought she weighed more than she did. Apparently, according to the way this was reported, she owes her survival to this otherwise insignificant detail. Had the pair of scissors not been there, once again her life would not have been considered viable, as she would not have been considered able to survive and, more importantly, to support life, and a quality of life which would make the thousands spent on her medical care deemed to be a worthwhile expense. In these days of the NHS having to justify every penny spent on patient care, (while wasting thousands of pounds in beurocracy!) this added weight is what gave her a chance at life, as presumably, doctors thought that if she was surviving at less than a pound, not including the weight of the scissors, she obviously is surviving for now, and is being given a chance.
Forgive me for bringing up the ‘religious’ thing once again, but in my opinion, no detail in this little ones life is insignificant, or unnoticed by her Heavenly Father, and her life was no accident, or mistake, whether her survival is considered viable or not. It is clear, at least to me, that God has a purpose for this little one, for it is He who is giving Maddalena her every breath, and He can use anything to thwart the expectations of the medical profession, even a pair of scissors. It seems for the moment, at least in what has been broadcast that Maddalena does not have a disability as yet, unusual in one so small. However, as with all premature babies, her survival is still precarious, and due to her weight and how under-developed her immune system will be, her life could be wiped out by something as simple as a cold. For now, however, she survives. I intend to follow her progress.
On the same day as this little child was born, there are others fighting for their very survival. In a world where achievements such as the ability to find, and maintain a job, and indeed to be able to search for a job in the first place, and therefore not sponge off the state, is paramount, disabled people continue to fight. We are fighting for many different reasons. As in the case of Madelina, we are figthing to prove to prove our lives are ‘viable’ and have meaning and purpose, despite some in society, including, it seems, the majority of the goverment would seek to place on us.
As I suspected, the Paralympics have been judged to have had no lasting impact on the way ‘odinary’ disabled people living ordinary lives are viewed and treated by society at large. It seems the ‘Superhero’ label is all too relevant. Achieve heroic things, and you are considered an inspiration, and your life is considered worthwhile, for you are making a contribution to society by inspiring the rest of the nation to consider themselves lucky, amongst other things. It may be that view of disabled people in sport, and disabled people’s sport has changed, but as I suggested in a previous post some months ago, Lord Seb Coe was too quick to say attitudes towards disabled people had changed in any meaningful way. As is stated in the news item, According to this latest survey from Disability Charity ‘Scope’,
A high profile figure has come out in support of the survey, The Director of Public Prosecutions Keir Starmer QC has said in the article it is his “hope that [the Parlympics] has enhanced our understanding of people with disabilities, my fear is that the surveys continue to show a high level of abuse.”
While I applaud his courage in furthering the cause of little known “Disability Hate Crime” for some of us the fight is even more basic than this. Some of us are fighting for our survival and the right to a basic income, food, heat, an (accessible) roof over our heads, for those who are able, meaningful work, to allow independent means of obtaining these things.
There are so many arguments it is difficult to keep track of them all. However, one of the arguments I have heard that shows a lack of basic understanding, (and an attitude that stinks to the Heavens) is that why should the taxpayer be funding disabled people to stay in their beds all day when others have to go out and work to obtain the same things others get for free. I have said from the beginning that in some ways I wish to distance myself from activism as we are only in part fighting for the same things. I do not wish to associate myself with much of the propaganda constantly churned out through social media, and consider the current fight regarding #ESA to be somewhat irrelevant considering that this will be dispensed with in a matter of months. For me, ‘Universal Credit’ is the more important fight, as there are rumours that the ‘premiums’ on which I depend will be wiped out. For now, this is but a rumour. Nothing is certain for now, although I fear the ‘devil (will be) in the detail’. For now, we survive, and fight on!
Don’t just sit there… wait expectantly I’ve written a new post on Advent for The Big Bible Project. Go check it out!
I suspect the following may well be controversial, but it got me thinking so I wanted to share it. It talks about gratitude and what we should be giving thanks for. “Your affliction falls well within the overarching decrees of God. It comes from His wise and kind hand and for that, you can give thanks. In it and for it.” — Joni Earekson Tada, from the Daily Devotional Email 19/11/12 Here’s the link to the original post.
So, does God give us our afflictions, in my case physical disability, and chronic illness, amoungst other things.Joni’s reasons for reaching her conclusion is that the daily grind with her quadraplegia brings her to God minute by minute, Another reason she gives is that God’s Word asks us to give thanks for everything so for her the ‘everything’ includes being thankful for her disability. The sovereignty of God means her suffering through her disability is not somehow separate either, as God is also Lord of her disability. Also, instead of having her quiet time and then getting on with her life, it forces her to live out her faith wheeling close to her Saviour, as i read the other morning in “More Precious than Silver Daily Devotional e-book.
I do absolutely recognise the logic of her argument. If God is Lord over everything, that includes my disability… but to give thanks for it, specifically?! I do thank the Lord he is using my disability to teach me how to depend on Him for everything, and how to ask others for the help I need without becoming so dependent on them, that I shut God out. I recognise it is God who has walked me through the four years since my operation which gave me a bag on my tummy, and eventually meant I needed carers, and an electric wheelchair amongst other things. Indeed, it is God who gives me my very life, my very breath, and if he chose to, he could take me home to be with Him in an instant, but did he give me my disability, something which gives me so much pain, and tiredness, and so limits my life? He is using it for his Glory, and to help me to help others, as you can read here, if you haven’t already.
if He did not give me disability, then how could he include it within His plan for my life? Indeed, God knew what each day of my life would bring before I was even born. (Psalm 139) I cannot reconcile this with God giving me my disability though. I would so like to know everyone’s thoughts on this, and work through it together. In the meantime, here are the verses from God’s Word that inspired the text of which I write.
19 speaking to one another with psalms, hymns, and songs from the Spirit. Sing and make music from your heart to the Lord, 20 always giving thanks to God the Father for everything, in the name of our Lord Jesus Christ. (Ephesians 5:19-20)
title=”Pray for Caden Beggan”>Pray for Caden Beggan Dear Readers, for those of you who do the praying thang in whatever form, please may you pray for a young lad of six years old called Caden, from Motherwell who has meningococcal septicaemia. He is in intensive care at Yorkhill children’s hospital in Glasgow and has had […]
The Art of Compassion This is the link to my very first article for Bible Reflections,oh the excitement! I have written the article from my experience of being there for others in need, what God is teaching me through it, and what the Bible has to say about how to love people who are hurting.. This […]
This is my answer to the daily prompt from 14th November. I’ve not very o fay with time of day the posts are published and what time that is in GMT so I’m not always on the right day! However, the subject of this post really caught my attentions as it asked each of us to think of a time that would, could or should have turned out differently. My answer came pretty easily to me. It all has to do with my tongue…
Those moments where what is my head just comes out. Worse I say what is in my head without thinking. Even worse than that is I say what is in my head without even thinking in a hurtful tone of voice or in anger. Not being very physically able, the easiest way for me to hurt someone or do something wrong is by thought, speech, or both.I can think of one group of people, one carer and one PA from different times in the past few years with whom I would like to have gone back in time and ‘undone’ my actions.
However, this is not possible. Thanks to the saving work of Jesus on the cross. It is possible to seek forgiveness from Our Heavenly father for my actions, and to pray that He may heal the wounds I have caused, but is impossible to go back and repair the damage I caused. That I guess, is my biggest regret when we are called to be ‘salt and ‘light’ and I am anything but. It shows me how important it is to ‘make the most of every opportunity’ to reach out to others in whatever way I can, and to remember that as tired and pained as I am this is not an excuse. Perhaps I am being hard on myself… but I do pray that those people may meet other who witness to them more faithfully that I did, and short of being able to start over, all I can do is entrust it, and them, to the care of our Heavenly Father, and be thankful, that this I can do!
When I started writing my blog I resolved to keep it as realistic to my life as possible, which meant the good the bad, and the stuff in between. It also means, not over-exaggerating things, and thinking before I tweet, or post! I am sure most of us are aware by now of the tendency a lot of people have to over-share, in part I think due to the false sense of intimacy that one can often have. We tend to forget about things like targeted advertising, which is when Facebook sells our info to advertisers, so that their ads get to the right people. Also because we are writing things down, perhaps it feels just like writing a letter or an email, but more people than just the friend(s) it was intended for read your updates, tweets, and posts. With all of that to think about, and perhaps a lot I’ve left out, how do we document what really goes on in life, especially with things like disability or chronic illness without being so negative you drag people down with you, or so polished that people think everything is ‘fine’ all the time?
Today was one of those days where I think, “how did I ever do all ‘this’ on my own for three years?? ‘This is getting up, a shower, getting dressing changing my stoma bag breakfast, taking my medication, getting ready to go out. Sounds simple enough? Try adding in it being ‘one of them mornings’ like everyone can have sometimes, plus the idiosyncrasies of an ill/disabled body, and all the aspects of having care, and there’s one toxic mix.
The morning started fairly well, as I got myself out of bed, with only a bit of crawling from bed as gingerly as possible. So far so good? Wrong! The (stoma) bag had ripped overnight, even though most of it had drained into the connecting night bag, meaning the ‘day bag was almost empty. Have explained all this to ‘specialist nurse’ who says it’s ‘just’ a manufacturing fault and I should use the other batch of bags. Sorry but I need every last one! This is also the only system I can use because it’s the only one with a night bag suitable for use with my type of stoma, when it’s likely to have to cope with undigested food and all the rest without getting blocked. So to do anything about the bag is a losing battle, unless I win the lottery… in which case I will commission the best in the country to deign me a bag for my type of stoma which is thin, durable, flexible, and kind to skin, as well as sticking to it, and has an accompanying night bag system than can come with my peculiarities.
None of this being an option, we had to deal with what was in front of us, so we changed all the parts of the stoma bag before I showered. Unfortunately, the bag refused to stick, so we had to start over. This combined with other issues, meant my carer call was longer than 2 hours, just for a ‘morning call’ when I am only allocated an hour and a half! Obviously, I was utterly exhausted after all this and relieved to have a break before I went horse-riding. I started writing this, and got myself ready to go out. This means plenty of planning ahead.. a healthy lunch, that I can successful digest, plus my medication dispenser fondly known as the “UFO, my plastic beaker, and all the rest of the ‘stuff I can’t go anywhere without.
Today, transport went surprisingly smoothly — result! This time I used a social enterprise company. The only firm that will drive me the two miles while I’m in my electric wheelchair. Any other refuse, or I have to use a ‘normal’ taxi with my little manual chair, which makes me completely dependent on others. Having got to the social enterprise where I learn with no incident, it was time for my ‘team’ to swing into action. The woodwork shop have made me beautiful steps, complete with handrails to help me get to the ex police horse without being lifted like before (health and safety ‘MARE as I’m sure you’ll appreciate/! Now my friend helps me climb the steps and supports my trunk enough to stop me falling, while someone else drags my leg, now rendered immobile, over the back of the saddle, while someone else keeps the horses head still… mission accomplished!! Loved it today… was almost tropical weather, beautiful views, and great company. Me and the ‘team’ got me back into my chair without incident as well, which is an absolute JOY given how painful it was before. Don’t get me wrong, it is flippin’ painful now, but at least there are less steps in the process and less risk involved — HURRAH!
I ate my healthy lunch, and socialized without incident, making it home with home with help from the social enterprise again. So far so good… now to get on with this blog, writing for something else and catching up with things. I was totally wrong! I spent most of the afternoon waiting for the district nurses to arrive to help me with the bag. No one knows what to do about any of this as I am all out of options. As I sat here now, the bag the nurse(s) put on hasn’t stuck so my stomach is covered in my lunch or dinner. I am refusing to look. My skin around the stoma is already red-raw and throbbing so it’s unlikely to get better from this wither. Feels like a wasted afternoon and evening. I have between 30 mins and an hour to get more productive things done, starting now! Wish me luck… I think I might need it!
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sat n' all that 