Tag: wheelchair

‘New door has opened’ with robotic exoskeleton – Channel 4 News

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Paying a premium to feel ‘normal’

I’d like to encourage you to follow the link below to the video and article by Sophie Morgan, one of the presenters of Channel 4’s paralympics coverage, as she trials something called an exoskeleton. It’s incredibly moving, as you might expect, but also shows both what can be achieved through technology and also what it’s limitations are. It highlights the limitations of most ‘specialist technology, such as prohibitive cost.

 

‘New door has opened’ with robotic exoskeleton – Channel 4 News.

 

However, the freedom that this robot provides raises interesting questions, as for people with an aquired disability it gives people something of what they had lost, albeit primitive, until the technology develops. One of the dangers of this type of technology is that is reinforces current stereotypes, that to walk is normal, and to wheel is an inadequate alternative only suffered by those who have no other choice. This is something which Morgan herself alludes to.

 

what has happened, in effect, is that a new door has opened to a world where, despite my disability, I can still have the freedom of standing and moving, but that the condition I have adapted to doesn’t need to change.

 

This approach highlights the potential problem, as standing and walking equate to freedom, despite Morgan being “comfortable” with being in a wheelchair. The potential dander then is, that to be in a chair effectively means your body is in a prison, or at least that to use wheels is the poor cousin to walking, and therefore being independent, and ‘normal’, although it is interesting that Morgan denies some of this.

 

The final quote from Morgan immediately brings more than one Bible passage to mind. (Apologies to those who consider me to be bible-bashing!) Morgan says that perhaps one day “ill [sic] be jogging down Brighton beach with an exoskeleton robot under my trousers and my wheelchair in the skip!!” The truth is of course, that for those who turn to Jesus, one day we really will be jogging, and our wheelchairs will be in the skip. We will have a freedom far beyond what any robot can provide, however ‘advanced’ it is. That said, this is an interesting development which I look forward to following.

 

 

 

BBC News – Paralympics 2012: How do people view the wheelchair?

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BBC News – Paralympics 2012: How do people view the wheelchair?.

I have been meaning to comment on this excellent video for some time now. In the audio John Hockenberry asks a couple of pertinent questions which, while he provides sparking answers, also provide room for debate. The first is this:

Those exact same elements that might put you off are transformed in the Paralympics. Why? 

It is question of identity,  centered around how we see the “other”, those who are different from our perceptions of normal. Also, where we see the person may alter the image, so not just the body, but also the environment. As he says, it is a case of allowing one image, that which our subconscious has been trained by the media, our nurture, and stereotypes to be seen as tragic, we allow to become triumph. This also explains our potential reaction to any of the pictures in the photographic article The 33 most inspiring photos of the Paralympics. (I have also offered my own comment on the images in my previous blog post.)

This would be the case not only for the person or people looking on, but also for the disabled person themselves. How does their disability alter their view of themselves. I can only speak for myself in this. For me, this such a huge question.; From tragedy to triumph. I have partly answered the question before, in explaining how difficult it ws to come to terms with the consequences of major surgery, but this question also applies to how I view myself as a person with cerebral palsy and as an electric wheelchair user. As I explained in the same article, being told I use a wheelchair full-time, for me, really was a tragedy and one I am coming to terms with. In terms of how it affect my self-image, I feel it makes me look somehow vulnerable, in some ways more disabled than I am, as I am able to mobilise a bit.  Both how I view myself, and how others view me depends on which aid I am using, amongst other things. If I use my electric wheelchair, and my environment allows me to use that chair unaided, I have a sense of freedom I do not have at any other time, as I can decide where I want to go, when, and for how long. Put me in my self-propelled wheelchair however, and it’s a different story. Then, I do not have the same freedom. Recently, mu manual chair was being fixed, and I’d gone to a local gym in a taxi with my Zimmer frame, and a carer. After the usual pleasantries, somehow I blurted out how I wouldn’t be so fine after my swim, having had the exertion of walking from the house to the taxi, the taxi into the gym etc. Her response was incredibly thought provoking. She exclaimed in surprise, “Of course, where’s your wheelchair? You looked so natural walking out of the lift that I hadn’t given it a second thought!” This is party about one way of mobilising being normal, and the other, abnormal, natural vs unnatural. Also, somehow on my feet with the Zimmer at least, I feel taller, and don’t look “disabled” as such. That is, until I wobble backwards, or tire, which happens after a few steps. This particular incident has really got me thinking though. With the Zimmer, however I may look more ‘normal’ but I do not have any of the same freedom as I do the majority of the time in my electric wheelchair. I have to be having a ‘good’ day, both in terms of pain and energy levels, and be somewhere “barrier-free”. A different environment, and it’s a different story.

The tragedy… gets trumped by the intent. When you see the athletes using their bodies and equipment, not being used by it, it changes everything.

My electric wheelchair is definitely the mobility aid which allows me to use the most ‘intent’; the wheelchair has a purpose. Like I say, I dictate where I go, without depending on another. I might not have as much leg function as I used to, but it hardly matters in my ‘go faster stripes’ wheelchair! (mine is similar to the one below, although the frame is black rather than this fetching lime green model, and I have extra cushions!)

So, what else does John Hockenberry have to say about the ‘wheeliechair’? He goes on to describe is as “an alternative to walking, not some shameful and inadequate substitute”. WOW. i guess I would find that easier to identify with if I saw a Paralympian such as Hannah Cockroft propelling her chair in the street, than I can use this phrase for myself. It’s  different too, having walked  for the majority of the previous 28 years. However, I have to learn to see myself as the “agent, not the victim”. I’m sorry if this sounds like I’m labouring the same point. I find this video, and the words Hockenberry uses so powerful and transformative, we are participating and whatever caused my disability, or that of anyone I see in the street is “way back there, way back at the starting line!” 

This view of the wheelchair, and other ‘aids’ has the power to turn stereotypes upside down. however, some of this depends on the look of a product, and the design of it, as well as it’s function. An organisation called Enabled by Design, for example, feature reviews of products, ‘specialist’, or not. I have read several articles on the importance of the design of aids and adaptations. These of course cost money, which is what Disability Living Allowance helps to compensate for. They should be just that, something which assists us, and more readily available, as opposed to often prohibitive costs, which would enable more people to be agents, and not victims. It is about more than identity, and the way others view us, but also whether aids are ‘sparkly’ enough! I’m all for sparkly chairs!

I’d love to know what you think of the video, how you view disabled people when you see them in the street, or the design of aids in general.

People mostly… (and horses)

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I started writing first couple of paragraphs earlier this morning, but the router has been falling over even more than me this week, and it was more important to have bible time than to faff with t’internet!

What haven’t I blogged about this week?!

Normally I have been known to write an average of one “this was the week that…” post in my week. Normally on a Saturday, or a Sunday if I’m being naughty. I did wonder if there was any need for me to write one of those post this week seeing as I’ve already blogged more than usual. I’ve talked about the paralympics, though I’ll have to stop that now this is the final day (sob!) I’ve written a couple of commenting-on-the-news posts, mostly about Rimsha, the 14-yr old girl with learning difficulties being persecuted in Pakistan. There was also, selfishly, the soul-baring post I wrote earlier this week on “The (5) days that dared to change my life”. I have been overwhelmed with responses… mostly in people’s kind comments or tweets, or just that people have read it at all… have been overwhelmed by how many people have read that particular post, cheered when I’ve realised how many people have been interested in reading about the paralympics, and heartened when I realised how many took the time to read about, and hopefully pray for, Rimsha. Please do continue to pray for her and for her family, or to start doing so if you haven’t already. Other topics I blogged on this week are things I am likely to write about in the future, like falling, for which I could compete for a medal! As far as Christians being tested for their faith, I have written about cases recently appearing in the European court of Human Rights. We in Britain know nothing of what it is like to be singled out for our faith though. Please pray for those who are. For prayer pointers, please look at the eebiste of Open Doors UK

 “Nowt so queer as folk”

The main thing I have yet to blog about are the other three main activities this week. Encounters with people, learning about the magnificence of horses, and the supporters day for a local Christian Social Enterprise.  First thinks first. I spend a lot of my week managing people. This could mean all manner of things. For example phoning people to arrange appointments, pay bills or phoning nurses, friends or carers for help! I have already talked twice in this blog about care, but I spend much of my week managing carers. Worrying, before I get the rota that week, exactly who will be turning up and if they will be trained to meet my needs or if they will wing it. This week, I went swimming for the first time this year, which you can read about here. The only thing I neglected to mention, is that I’d happened to say to the receptionist I would be exhausted when I came out of the pool. So Emma said and why’s that. I thought oops I’m going to accidently embarras her here. I quetly said it was because I didn’t have my manual wheelchair. ‘Of course you don’t she said. “So where is it? I forgot because you loooked so natural weith the zimmer!” How are you supposed to look with a zimmer exactly?

Horses (I love then to bit at all times, except when they tear lumps out of my chair!

The other exercise of the week was my horse-riding lesson which I spent re-learning some basic dressage ateps. I thought I did pretty well. The worst bit was, I tried to make like a papralympian, in this case, the beautiful Sophie. I have no idea hoe she manages with her feet out of the irons; it looks so painful. I spent a couple of days getting over the shock! That, and I had my first ‘horse related incident. Given this one, You think I’d have learned from it!! I had some mints with me so I shared them among the horses equally, until Paulas asked me to give my last polo to Gwen. This I did, and returned to stroke the nose of the middle horse, mistakenly with the wrapper still in my hand. Not finding any more polos, the horse decided he liked the look of the golf ball I use to steer my chair and stole it. At the point, there were not staff around. Perhaps I could/should have waited till the reappreared. As it was, the horse was not letting me has the golf ball back, so I went knee first into the stable door till he relenyted which sounds bad enough. Wait till you hear the Saturday incident from which I have yet tcover.

Supporters Day… People, horses, and children … young ‘Barry’ anyway!

The final part of week is the other major highlight. The open day for the supporters of the local Christian Social Enterprise charity. To protect the safety of the young in’s I would not care to mention the name of the place. The day started well enough, with a service, thanking the Lord Jesus for all he has provided for us this past year, all that he is providing and praying and trusting that he will continue to provide. I chose my own role for the day after that, talking to the parents of friends, many of whom I know by sight, others I had met on random occasions such as the couple who’d helped me cross London two years ago. I decided then to seek out those in wheelchairs or whatever, the ‘crip brigade’. I made friends with a young lad who gives all the pocket money to us, talking to another wheelchair user who explained the joys of hand gliding (paragliding?) with a chair. I then came across a couple who had been to the farm that frist year. Was lovely to swap geography, and stories with them. Before lunch I had met a young lady called Eleanor and her mum Janet, who explained Eleanor could not see me but could hear me, so talked to her of the horses, and took Janet too them. However, when we got to the same horse who caused me chair related mischief on Tuesday. I should have stayed out of the way! I clearly have not learned my lesson! My chair is now minus the button which ‘reclines’/ tips the chair backwards. I did rescue it from the hourse but it fell of my chair at one point before I lost it. I shall have to phone the wheelchair servicing co,many firs thing tomorrow to figure out how to repair it as quickly as possible.

I had better get myself off to bed. Before I go though, one final word about paralympics 2012 The speakers did not half talk a lot of nonsense. Lord Seb Coes gems of wisdom included the lines: “we will never think of sport the same way, and we will never think of disability the same way..” How is he so convinced that years of discrimination and so on has been turned around in te course of a mere 11 days. He’d have to start by changing governments attitudes to both disability and to disabled people. Another man with high expectations of disabled people is Sir Philip Craven who talked about a small boy who had been reading Treasure Island with his mother, who asked him about the main character, expecting her son to say the man was a “pirate, instead he said “athlete” The implications of this, is to assume that all disabled in some way are ‘athletes’, or can become athletes which is far from the case.

He also committed a further gaffe , which to me was worse than the first, as he claimed the magic of the Paralympic  Games would last  for an eternity, what a lot of RUBBISH!! Sorry to sound particularly Bible bashing, but he really has not thought this one through.My thoughts seemed to be echoed by my friends, including Partakers_Dave  and, and Pam who said she was “worried that such amazing feats will be expected of all disabled [people]in a way that will be even more disabling”. I often feel that disabled people are made to feel the truth of this already as ” superhuman feats’ like being able to work, find and maintain a job is expected of all of us who are out of a job, whatever the reason may be.The last word goes to Clare Balding who says””this will all only matter if it changes the way you think, the way you feel” — Clare Balding. I hope she was talking about attitudes to disability then, because it would have been one of the few sensible things said all night.

Over to you!

I’d love to know:

  • what did you think of the closing ceremony? The good the bad and the ugly?

  • what now for the future of sport

  • Or any other comment you would like to make on any aspect of this blog?!

The one with the ‘curlywurly’

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An ordinary start, to an ordinary week!

Given the exertions of the previous week, a restful week this week would have been the sensible thing! Not a chance… It was such a long week that I can barely remember Monday. The two or perhaps three staff that are about to leave haven’t yet left, and still they needed to send a carer from another area to cover the respite sit/PA time. Fortunately, this one was lovely and allowed me the same flexibility I have with my regular carers. I bought my usual shopping including said ‘curlywurly’ (chocolate covered toffee in a curly shape, in case it’s not available in the US!)

I got to go horse-riding on Tuesday, which I love as it gives me so much freedom. It’s time out of my chair, it gets me off my estate where I live, and because the horse is so tall, I have an amazing view of the countryside. For the moment the benefit of horse-riding out-weights the horribleness of the pain I am in, and helps with aches and pains because of the movement of the horse. I have a special saddle, which means I mostly sit ram-rod straight, which is good for my posture. I also have great banter with the people who help me. So far so good, until lunchtime.

The ‘curlywurly’ moment

Tuesday was day two of the D-I-E-T. I decided after the trauma of Sunday that I needed to lose weight to help with the back pain and needed a sweet treat fairly low in calories, and that didn’t feel like a ‘diet chocolate bar. Sounds great. Unfortunately, in went the curlywurly, out came the filling, leaving me with a such a large space in my tooth that I kept hitting it with the tip of my tongue. Fortunately, I manged to get an appt to fix it temporarily within only a few days, which is a bit of a rarity in this country. Before all that, I had to get home. More of that in a previous post, as it’s part of a bit of a saga

Mind-mapping…

By this point I was shattered so had completely forgotten about a appointment. My new OT arrived to do a sort of mind-mapping thing of where my head was at this point… great timing. We decided to focus on what my ‘roles’ were… so I am a daughter, sister, friend, listener… to carers as well as friends. It was so helpful to do that. The OT words were that it helps to ‘validate’ things I do manage to do, and where I want my priorities to be. As it turned out, the things I like doing and want to spend my energy on were on the left hand side of the page, and the things I end up spending my energy on were on the right hand side of the page. Things like appointment, being a service user (of several services) and all that entails, and trying to ‘people manage’, which I have ended up doing all of as I don’t yet have a ‘Joint care manager’, after more than four months of NHS funding. My OT told me that after some investigations, my file has disappeared into the either… welcome to my world dear readers, par for the course for me, however pessimistic it sounds. If you aren’t currently working due to being ill/sick and/or disabled, I’d recommend mapping out what your various roles are because it will help to see what you do manage to do and work out what else you might manage to do or to refocus where you are spending your energy. I spent the rest of Tuesday recovering from it all!

A new hobby

On Wednesday, I tried and failed to find a recipe to cook and freeze and decided to make bread instead. This means with me mostly directing, and the carer mostly doing. Somehow I ended up with more flour on me than the carer did! According to the carer, the bread looked like ‘sick’! However, it smelled like bread as it was cooking and tasted like bread when it was out of the oven… result! Odd, that I felt I’d accomplished something new when my carer did most of the handiwork! I’m definitely making it again as it is so much nicer that shop-bought bread and easy to do.

Me, the Social Flutterby

Thursday arrived, and I had a busy day planned, but fortunately this was a Good Day. Lots of banter with the morning carer, which as I explained before makes a big difference. I had a chance to rest, followed by an appointment to update my care plan. Just after this I got a welcome surprise visit from two lovely ladies who are volunteers with the local social enterprise who teach me to horse-ride. We had a great time catching up and there were lots of laughs. They worried about tiring me out, which happens very easily, however,I had time to rest before I went to a well know eatery with the bread-making carer and a dear friend. I left the carer and went to the nearby cinema with my friend to watch the film “Brave” the new Disney/Pixar animation. Caution: skip this part if you’re planning to see the film as this next part contains spoilers. I’d heard nothing about it before I watched it, but quickly realised most of the stronger characters were female. It’s basically about a mother/daughter relationship, and about being careful what you wish for! The moral in the tale is about finding your destiny within yourself rather than from a fate (or higher being?) which I don’t agree with, but I liked film and how it had strong female role models. All the Scottish accents kept me amused thought the film, and being Scottish myself meant I picked up on more of the jokes than my friend. Or, maybe I just have an odd sense of humour. I’d highly recommend Rachael Held-Evans Review of the film, which you can read here. After all of this, it’s hardly surprising I fell asleep in my wheelchair in the early evening.

Friday morning started uneventfully, and I got ready to go and meet my friend. It was fine, until I tried to leave. It being Friday lunchtime it was difficult to get a taxi. I tried to get my manual wheelchair to my carers car, but realised the wheelchair was completely busted. I ended up deciding to put my walking frame in my carers car and wing it. It’s crazy that I had to walk and put myself at so much risk when I have an electric wheelchair, and can’t get a taxi. I had a enjoyable catch up with a dear friend over a pub lunch, but an still suffering the consequences of trying to walk, even though I only crossed the shopping centre, street, and square, and back again. My feet are red raw, I’m exhausted and in so much pain. I really have to get the transport situation sorted. The rest of the day was a bit of a struggle due to medical issues and fatigue. I just completely crashed when I got home.

Drama, Drama, Drama

I’d hoped the drama would stop today but I started the day with a broken washing machine. These things are part of running a household but I have a smaller washing machine because the kitchen units are lower than normal. Absolute pain as I wasn’t informed of this when the kitchen was designed. However, I’ve made things worse as I didn’t fill in the guarantee. Off to start sorting it out so I can party later!

Transport (or lack thereof!)

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A thorny issue…

I am well aware that the much-debated  subject of which I write is an understandably thony one, and to which there are no easy solutions. However, it is one which is having a huge impact on my quality of life. It also has a huge impact of the quality of life of many other disabled people too. I am wary that this will sound like a rant, as too many blogs on these and similar subjects can be, due to the depth of people’s feelings and the lack of any real solutions.

Right, where to begin. Transport has always been an issue for me, right from the point I left home at 17. There would be times I would stubbornly walk places, and suffer the consequences afterwards (blisters, pain, spasms. Other times I would fork out for taxis I could barely afford. I have always been someone who would would rather fork out for transport, and expend energy I didn’t necessarily have, in order not to miss out on social occasions. The impact of not doing so always seemed far worse. On the whole I am of a similar mindset nowadays, there just being many more circumstances, much reduced options and much more fear as a result.

For a while now, I have been compromising a great deal, whether that be sacrificing my pride and scrounging lifts off friends, (I HATE asking for lifts ). This means using my mannual self propell (SP) chair or my 3 wheeled walking frame. The walking frame or my zimmer is okay for short distances such as to/from cars and in and around friends houses. The thing is, I am not particularly supposed to be using it at all, though i can get away with it for what I’ve mentioned above. Ideally, I am supposed to be full time in my electric wheelchair. There-in lies the problem. Unfortunetly, this is where the problems start…

The saga begins..

I spend a great deal of my time trying to manage all these problems. A kind of damage, or circumstance limitation you if you will, due to being unwilling to sacrifice most of my social life. If I were to take my new electric wheelchair everywhere, I would immediately have to sacrifice going to friends houses. Then, I would only be able to go to places if I could get a rear-opening taxi, of which there are few. I’ve tried other taxis. There just aren’t many my electric wheelchair will fit into. My chair is very high partly due to the time of cushion I need and also to a possible error on the part of wheelchair services. I asked for this chair to be slightly lower than the previous one. However, it is the same highet as the last one, and the height of the memory foam cushion makes the highet of the chair from the top of the cushion to the ground still higher. Add that to the height of the chair as a whole plus the headrest, and you see the problem.

Then, add in that the local private higher firm only has a few rear-opening taxis, and that they seem unwilling to use them, either because the drivers dislike carrying wheelchair users (I have often heard this though obviously difficult to confirm) and also that this same company has the contract for carrying wheelchair-using children to school, meaning that these taxis are unavailable from 6am to 9.30 am, and from an unknown time (perhaps 2pm at the latest) until at least 4.30 pm, which is most of the time I need to use them. Given all of this, I need to look for alternatives.

One of the biggest firms in my city  also have some taxis where the door open outwards, but again these are in short supply. The taxis which are high enough for my chair are too narrow to be able to turn my chair round and have the chair properly clamped in. The reverse is true for the taxis which are wide enough. I know this too my cost, as my chair got stuck in one of these taxis. Fortunately, the driver was understanding and patiently working out the best way to extract my wheelchair from the taxi. He ended up removing not only the headrest, but part of the sholder support as well, as these are attached, so to do without one I have to do without the other.

So, are there any options left to consider?

The only other solution is to use the local social-enterprise company, who market themselves as being more understanding that other firms, having staff who are more highly trained and more patient, and also stock the kinds of cars which fit more types of wheelchair. I have used these a few times, mostly without incident. However, this is also not without its problems. I am unable to book a church with them unless I book it far in advance, which would mean me being more organised. Also the times at which you can book can be restricted. There are times when I have phoned to book transport to be told that the person who takes the bookings is not available and I have to call back later. Once, I was simply told that had gone home, and the person at the other end hung up the phone on me.

There was also a more recent incident. I had to the social enterprise where someone is teaching me to to horse-ride. I’d decided that morning to take my mannual chair, (which other people then have to push for me) and book are normal taxi, transfering from chair to seat, and the same in reverse,  because of how difficult it is too book an appropriate taxi for the 5 mile distance from my home to the social enterprise. A friend had booked an accessible minibus for a very similar journey to the same social enterprise, at the same times I also needed transport. When the minibus arrived to take her home I asked if I could be taken home in the same minibus. The person refused. I politely explained I was registered with the social enterprise which they work for and my friend explained that I lived on the same estate as the person he was taking home. Still, the person did not budge. I had not booked so that was that. Off they went with an almost empty minibus, and only my wheelchair using friend for company. If they had been willing to be flexible they would have had two fares for the same distance. Given that they are a social enterprise ake a company you;d have thought they’d be greatful for two fares for the same distance rather than one. Later that day, I explained the whole situation to my Occupational Therapist, who offered to call the company on my behalf and make a complaint without indentifying me. I am too afraid that were I to complain in person, I would then be blacklisted and unable to travel with the company at all. My options are limited enough as it is without restricting myself further.

The impact of all of this on my life is such that I now restrict my social life to those events where I can scrounge a lift from friends and take my walking frame with me, suffering the consequences after. For the situations where that will not suffice, I use my precious carer/PA time and ask them to take me on the bus/in a taxi with my manual wheelchair. The main consequence of this, other than the posibility of injuring the person pushing the chair, is that not having adequate support can leave me in agony, and severely fatigued for at least the rest of that day and all of the following day, limiting what I am able to do in the days following. On the times where I am unable to book support I miss out. I also miss out on using my support for things like the gym or swimming because I’ve had to use my support time for when I need to go out with my manual wheelchair.

As you can read, I feel completely out of options, as my elcetric wheelchair is also too big for the bus. I know this because I used to have discussions with my Dad about this when he headed up the day to day running of a bus garage for a multi-national organisation. He would argue that wheelchair users shouldn’t be using the bus because they weren’t a disability organisation. When wheelchair users complained the driver would not allow them on the bus Dad would go and visit them at home to discuss the reasons why.

 

So, what now?

The impact of all of this is now I have a fear of travelling where once I did not. I am also unsure if my chair would be allowed on trains. I fear not, given the problems I have with buses and taxis. I fear the same problems would transfer, so I have not ivestigated it, deciding it is too much trouble. The consequences of this is that I have missed out on the opportunity of a lifetime: to see some of the 2012 Paralympic Games. There are other issues as well as travel, such as I only have 16 hours support and week not including mornnings and evenings. I could have much more, given the extenrt of my disability, but am unwilling to do so given the impact it would have on other aspects of my life, so choose to have less support, while I still have a choice to stubbornly struggle on instead. One of my carers pointed out to me this morning, that had a sacrificed one sit a week for several weeks, I could have saved up enough support so as to be able to visit the games for a weekend. He fairly rubbed salt into the wound, saying that I would have loved to do it, and that any reasons why I am not going are just excuses. The truth is, I am too unsure how I would travel, given that I have so many problems already with relatively local jorneys, without adding my care needs on top of that. I could of course have thought about a motability car but feel this option is already closed to me. I am unable to learn to drive myself, having been assesed as not having enough co-ordination ir stable enough reaction times to do so. As I have carers rather than PA’s there is too much variation in staff for them to drive a motability van for me. A friend investigated this option for someone else and discovered then that only 3 people were able to be insured to drive the motability car. This is an impossibly low number, given that I’d have to get one of my parents and one of my keyholders insured as well.

I feel I have exhausted all options, therefore missing out on a one in a lifetime opportunity. In my mind, you can’t get any more restricted than that.As to the solution, I have no idea, and it is now to late to find out. I will have to be content with cheering myself hoarse from my sofa and being satisfied with friends’ accounts of the games. I bet no one can cheer louder than me…

I may be sat… but I’m all that

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Thanks to lovely Julie for coming up with the name of my blog… “I may be sat… but I’m all that! It looks a bit clumsy in the blog address so I haven’t added it for now… till I talk to one of my blogging friends! I love that every single person who’s heard it has giggled.  I picked a tricky week to start my blog as it may well take hours to finish it!

This was the week that…

Somehow, you just have to pick somewhere and start… and somehow this week started badly. I’ve had glasses since I was 11 so had thought getting an eye test would be simple, and always forget I have one of those faces. I need thick lenses but small frames. I finally found frames that I liked that suited me… but that was the end of the story. I have written them an email to ‘explain my experience’ rather than complain, as a family member put it, but haven’t sent it yet. The staff were uber polite as always, almost to a fault. I should have known we were off to a bad start when one of the staff asked my PA if I could get out of my chair. If it wasn’t for my PA potentially doing herself an injury moving my little chair in tight spaces between the testing equipment we would have been stuck. I’d love to see what would have happened if I’d turned up in my electric wheelchair!

The next thing they asked my PA was “can she walk”!!  I’m one for keeping my head down sometimes and doing whatever I need to just to keep the peace. My PA wasn’t having any of that so we waited for the one room that was wheelchair accessible. I wasn’t asked or told any of this when I made the original appointment. The actual eye test with the optician went fine. Trying on glasses was another story though, as the girl who was helping me trying on glasses complained about having to hold a hand-held mirror so I could see the glasses, being too short-sighted to see them in the fixed mirror. Another two staff came over to help, so in the end I found some glasses that fit… that was the enough for my PA who went off for a cigarette while I filled in the paper work. The best customer service was when she wasn’t there! That says it all. The staff obviously found it hard to cope with me, my chair, or my PA. The irony is I couldn’t have got to the appointment and got through the tests without my PA so they only got the sale with her help! They need Disability Awareness Training and they need it now! This one incident shows why my blog has the perfect title!

I’m supposed to pace all my activities so I can still have a life, but have adequate rest at the same time… I’ve never managed it yet. On Tuesday, there was the second of their workshops supposed to help me and others like to me to manage the crippling tiredness better, but it felt like a lecture. My PA, this time was largely  ignored, and only used for one part of the group at the end… another frustrating day. The people who organised the training didn’t even bother to learn Julie’s name when they’d encouraged me to bring her along in the first place. Yet again I didn’t handle this well as I didn’t say anything. Another email to write once the workshops are over to ‘explain my experience’! We went straight from one appointment to the next, but fortunately this one went more smoothly.

By the middle of the week I was exhausted and in need of encouragement. I tweeted that I needed some cheerleaders and my friends didn’t disappoint. I forgot that my Twitter feed and my Facebook page are linked so this appeared on my Facebook page too. By the time I realised, one friend had already written some tips to help me get more motivated and help me get started on things and Bryony had already posted a cheer! too late to delete the post now! Actually this was my favourite part of the week. I love my friends to bits and they were there when I needed them. I’ve blogged elsewhere about the usefulness of social media when you are semi-housebound but this still took me by surprise.

The rest of the week was somewhat uneventful. My weekly horse-riding lesson in the sunshine was a welcome break from my wheelchair, and worth the pain! Followed by an appointment with volunteers from re:map to help design some me-friendly equipment. This is a work in progress but should be worth it eventually. After the week I’ve had I’ve had a welcome couple of days rest. Having not  paced the rest of my week I’ve collapsed in a heap. I still have much learn about how to manage things.

I still made it to church today despite how I felt. Peter preached on 1 Philippians from verse 19 to the end of the chapter, the verse that talks about “To live is Christ, but to die is gain”. As ever there was a huge challenge from the passage and from Peter’s preaching. I will post the link to his sermon once it’s up on the website.  Was lovely to have lunch with people and get know some newer friends better. I spent the afternoon asleep recovering, known as ‘payback’ fatigue, but it’s always worth it.

This week is set to be quieter. Just as well… have to come up with my next #digidisciple post, amongst other things! Wish me luck… or do the praying thing, if that’s your thing! 🙂