I guess I would say I have had a few surreal experiences in my life, given my precarious start, and the diagnosis which said thinks like I wouldn’t walk or talk, maybe be basically a adult-child in a chair. at eight months old, I was 6 months behind,. mentally, and it was anyone’s guess whether I’d catch up or not. Catch up I did, but only after 4 years of intensive medical care, operations, thousands of pounds worth of therapy, a few years in a ‘special’ (needs) nursery and more besides.
Ordinary things others achieve have been momentous for me, as they have been for other children with cerebral palsy, or experience of congenital disability in general. After that there’s the really ‘out there’ moments; snapshots in time where I’ve almost had an ‘outer-body experience’… I’m both in the moment, and watching the scene from above. These would include the rugby union lesson in P.E. in primary seven, I was good at it, me who wasn’t expected to walk; but the real subject of this post is the award I got when I was 17 for the highest marks in the Health and Food Technology exam in Scotland.
I got to go down to London to the Royal College of Physicians and meet Princess Anne, and be part of a celebratory lunch, banquet style. I remember very well the ‘Library’ where the presentation was. It was just beginning of the fur-ore surrounding the ‘Harry Potter’ franchise. I remember walking into the room and thinking it really did look like something out of Harry Potter, dark mahogany bookcases from floor to ceiling, wooden floor, and a cavernous room. We also got treated to a visit to the ‘London Eye’, and I remember a coffee at one point which was the size of a small bucket. I also remember the flight down to London from where I lived in Scotland, and not liking it much. BA staff also tried to tell me they’d lost my wheelchair. that would be because I didn’t own one at that point ! Snapshots in time, that I know happened, but still feels somewhat surreal, two University degrees later. Every-time I see her in the crowd at Murrayfield to watch Scotland play rugby, my mind wanders back to that day. Maybe I’ll get to meet her again one day, though it seems unlikely. Even if I do, it still will not top that day in the 18th year of my birth. If the doctors present in the first year of my life could have seen me then, it would have been surreal for them too!
Today’s daily post subject is welcome relief from the morbid fascination of late. These deep thinking posts are good to do once in a while just not all the time. Write your eulogy, epitaph, 5 things you would save if your house was burning, go back the next day and look for what you left… ugh!
It’s a welcome relief to think on something I ponder on in a while, if money was no object. Would have to have a calming colour on the walls, even a light yellow, if there would be any wall space left once the floor to ceiling bookshelves were finished. I’d definitely go for the best quality wood I could afford due to the cost, and for durability.
I’m trying to think how to make them accessible. I remember seeing something on Extreme Makeover: Home Edition once. This was a shelving unit too, but this one rotated at the touch of a button so that the button was held down until the required item was in reach, that would be amazing. I’m all for a quality product made in an accessible way, that appeals to everyone. This is also known as something called “Universal Design”. All it is, is a design everyone would want to use. My college tutor was fond of using the example of a part of the University where there were some steps side-by-side with a ramp. According to him, almost everyone used the ramp, rending the steps pointless and meaning the ramp could have been twice as wide, allowing more people to pass more comfortably.
The practical design would continue, with an adjustable height desk, and quality drawer space. I’d love the new windows 8 tablet that converts to a laptop, almost £1000k, without the accompanying keyboard! I’d have a proper keyboard, and as much software as I needed. As this is my dream set-up, the software would be compatible with windows 8 from the beginning of the process, instead of being a few months/ a year behind (at least) as is common. I’d save some money by not needing an office chair, obviously.
I’d use this money for either an electronically adjustable recliner armchair or a chaise-long, to be able to read comfortably, with soft overhead lighting. I’d absolutely have to have the best coffee maker and china mugs, and a popcorn machine. I would have plain popcorn, the kind a student I once knew used to live on when they were studying. It was delicious and much healthier than the salt, sugar or something in-between flavours.
What have I missed? Oh yes, the view. Given I haven’t seen the sea for such a long time, I’d love a sea view. I wouldn’t much mind which sea it was, though I’ve only ever lived near the north sea.
I wonder if I’ve missed anything?
What would any of you have in your ideal reading and writing room, if money were no object? I’d love to know 🙂
English: A typical credit card terminal that is still popular today. visanet (Photo credit: Wikipedia)
The title says it all. A somewhat un-sexy subject, but one very much in the news at the moment, and in the days to come. This week, two stories really affected me for two reasons, first, interest the arguments involved, and secondly, because both may have a direct impact on me in the future.
The first: Welfare ‘credit-cards’
This is one that sounds simple. A good idea in theory to some; much loathed and feared by others. This week in the Guardian I read an argument for and one against against the introduction of benefit payments by ‘credit-card’. In conjunction with universal credit, these cards would contain all of a person’s benefit payments on my card, in my case at the moment, Employment and Support allowance (ESA) and Disability Living Allowance (DLA). Every-time I bought something, it would show up on the card. What about places that don’t take cards?
Another concern for me, is that as each transaction could be itemized as on a bank statement, there is the potential that someone could see all of my transactions, and potentially make decisions on whether purchases were necessary or not, and if that was someone with the authority to do so, potentially limit my spending. This is a fear expressed by both Ally Fogg in his article for the Guardian this week, and by Tentacle Sixteen in his blog post. Items such as Sky TV are as luxuries to many, for the likes of myself, these things are a lifeline I can ill afford to lose. I spend much of my time indoors, and so spend a long time using wireless internet making purchases I would be unable to do in person for all sorts of reasons including, lack of energy, not enough care time to have someone with me, an inaccessible shop (Hobbycraft for one…). There is the updating of this blog, and so on, including social media. Not to mention the articles I write, between other things, which give me a purpose, and something meaningful to talk about when friends or others ask me what I fill my time with. Again, this to me is a lifeline. I very much rely on my friends. I have basic television and broadband subscription but spend more on telephone and mobile (I’m sure you’ll understand why, if you’re a regular reader…!)
Also, what about larger purchases? This laptop is dying, as is my ‘spare’ wheelchair. Both are very much necessities It is already hard to save up for these things, as savings are penalized if above a certain level. When DLA is replaced by PIP of course it may become impossible to make those savings in the first place. Who’s to say what is and is not necessities If the washing machine, a smaller model to fit under lower work-tops and three times the price (at least) of an ordinary machine, bye-bye new laptop and essential assistive software.
Next we come to a thorny issue, which I have already touched on: privacy. Will all the purchases be visible by another person, and what if the card is lost or stolen and accessed by another. What about the risk of fraud too, if only a pin number is necessary. It will, according to some, also identify benefit claimants as such, many already under pressure from increased discrimination as it is. Claudia Wood, also writing for the Guardian this week, takes a different view and argues cards would cut, not increase this stigma.
For a fuller discussion of the issues at stake, visit Tentacle Sixteen’s blog post, and or the Guardian articles from this week, which I have linked to, above.
Story Two: The ‘Bedroom Tax’
ITV news last night (Fri 1st Feb) featured this issue and spoke to a number of claimants as they expressed their fears better than I can. It refers to Housing Benefit claimants considered to have at least one more bedroom than they need. Money is deducted from their benefits as a result, about £14-18 a week or £600 a year.Some of the people being hit really are most vulnerable and ought to be protected, such as Claire. She has severe cerebral palsy, requires round the clock care, and has constant spasms, requiring her partner to sleep in the room next door, enabling him to be fresh enough to care for her the next day.
However, as Claire says, they will be forced to share a bedroom again. This has increased her partner’s migraines, rendering him unable to care for her, and them having to pay out for more care, relief carers for Claire which the couple can ill afford. Given the government’s attitude on similar issues, I find it difficult to believe they would realise the enormity and impact of such a situation. The government reply to this, was it’s tough, but tough decisions have to be made, and people should just get on with it. Sounds a valid argument, but yet more pressure heaped on the heads of people all read pressed in on every side. Remember the ‘compassionate conservatism’ mentioned by ‘Dave’ at the Conservative Party Conference in 2012??!
This is not a situation that now affects me, however, were I to need live in care in the future, on an ad-hoc basis, or be married and have a partner/carer unable to sleep because he’s being hit and kicked, or affected by problems with my bag, it doesn’t bear thinking about! My heart goes out to Claire and her partner. I just hope this Government sees sense before it is too late.
sat n' all that 