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Monthly Archives: January 2016

As a friend posted this morning on facebook ‘Enough now world! Seriously 31 days into the year – at this rate no one will be left by Easter’. She was, of course, talking about the announcement of the death of broadcasting great, Sir Terry Wogan. Last year we lost Christopher Lee, Leonard Nimoy, Cilla Black and Terry Pratchett to name but a few and, so far this year, David Bowie, Alan Rickman and now, our Tel have gone already. The voices and personalities of my childhood and growing up years. Well known people who, being in their late sixties and early seventies are almost from my own generation. Not that much older than me. It’s a scary thought.

My wise old Grandmother always used to say that you knew you were getting old when your childhood favourites started dying. She was talking about silent movie stars and singers from the 30s and 40s and famous politicians from the 40s and 50s but I am now getting to understand what she was talking about. Hearing that the men and women who were such a huge part of my life, whose faces and voices were so familiar to me, every day, have died certainly is very aging. It makes you start to realise that time is passing and that you too are really getting older. And that makes you start questioning what you have done with your own life? What have you achieved? Have you made a difference? What will you be remembered for?

All this sounds very miserable and maudling but that was not my intention when I started to write this blog. Instead I want to look at my own life, at my first half century and decide if there are things I need to do, things I want to do in my next fifty years so that I can, if possible, leave a positive legacy.

So. Firstly. What have I done? I’m not sure. By far my proudest achievement is the fact that I have raised two amazing children from birth to adulthood. The next generation of my family.  They are now doing their own thing but, I hope, the values, morals and ideas I have introduced them to over the years will hold them in good stead for the rest of their lives and allow them to be happy and successful in whatever the future holds for them. Then there is my working life. Until recently I was an advice and information worker for older and disabled people and I would hope that, in my own small way, I have been able to help make things better for them. I hope I have been able to guide people towards a solution to some of their problems. It sounds very big-headed to me but I hope I have made a positive difference to their lives too through the help and guidance I have been able to offer.

But now, thanks to illness and disability, that part of my working life has, largely, come to an end and I’m now into stage two and the future. What shall I do now? How can I go on doing my bit? Well, so far I haven’t worked out how to earn any money but I am hoping that my newly found ability to write is the way to go. I have always enjoyed playing with words but now, thanks to my blogs, some people seem to want to read my musings. I have always had an opinion on all types of thing but now I’m letting those opinions out to a wider audience. Whether people agree with me or not is immaterial. I’m doing something. Maybe, if that means that a few people will end up with a better understanding of how what happens in the wider world affects the narrow life of a middle-aged disabled woman in South London, that will be a good thing. Who can tell.

I can also try and do what I have always wanted to be able to do and write a novel. Getting my own book into print and onto some people’s shelves would be so special. Over the years I have started many but only finished the first draft of one. Lots of ideas keep racing round in my head but only one has ever made it, in it’s entirety, onto my hard-drive. Maybe my next challenge will be to get drafts two, three and, possibly, four done so I can publish it. Now that would be something to be proud of as well.   

I suppose reading about the deaths of the superstars of my youth, and then, adult life is going to be something I will just have to get used to as the years progress. There’s nothing I can do about that. But living my own life to the full and having no regrets is something I can do. So I will.

Well. That was interesting. I’ve just been reading a post on facebook that a friend has written about how life has changed for him since he became ill and restricted to bed two years ago. And it’s got me thinking about me and my life. It’s only been a year since I got really ill and things changed for me but, oh boy, what a change.

Sure, I’ve been disabled for years having first been diagnosed with MS way back in 1985 but, apart from becoming a wheelchair user in 1998, I have been able to live a pretty ‘normal’ life throughout. Uni, children, work, making a home, more work, more Uni, same as the rest of my peers. Then it all went pear-shaped, in the form of an infected pressure sore that got me into hospital for a while, and my life started going off in directions that I had never even considered. Suddenly, instead of going out every day, seeing my friends at local cafes and restaurants and being a ‘lady who lunches’ on a regular basis, volunteering every week at an organisation just down the road, living my life to the full, I found myself stuck in a bed in my living room 24/7 with carers coming to look after me three times every day.

I think the invasion of carers has been the hardest thing to come to terms with. That and the enforced inactivity. That’s not something I’m used to and I can’t say I like it very much. It’s so dull a lot of the time, me, my computer, the TV and a bed. I think, if it wasn’t for my computer and my broadband access I’d have gone completely nuts! But having to use carers for everything, that has been so tough. I now have people coming in three times every day to do all the things I used to be able to do for myself. They wash me, dress me, provide me with food, do my laundry, wash up and everything and I don’t think I like it very much. I don’t like losing control over what I do and when I get to do it.

Sure, having someone to do the washing and sweeping and hoovering and general housework is quite nice but fighting the words written in my care plan is not nearly so good. Agency carers don’t do anything that’s not in the care plan so, when I asked one the other day if she could wipe down my bathroom sink with some Cif cleaner and clean the toilet for me she said no because that sort of cleaning is not in my care plan. The problem appears to be the fact that I live with my two adult children so social services expects them to do all the cleaning and not my carers, even though it’s what I used to do myself before I got stuck in bed. I always thought that my carers were there to do the things I couldn’t do myself due to my disability but apparently there are imitations. Having family members living in the same household means they have to do everything, even the things that used to be my job. It doesn’t seem fair. I want to be able to go on being the Mum that I was, doing everything I did before, but I can’t and my carers won’t and I don’t like it. And the privacy thing is bad too. I really don’t enjoy having so many people seeing me naked and touching my body when they wash me and dress me. I wish  could still do it myself or, at least, choose who does it but I can’t and it’s soul-destroying.

I don’t like the other restrictions I now have to live with either. I have to plan when I go out so I can sort out carers. Spontaneity has vanished from my life. No more hoping on a bus and going into town when I want to, I have to give my carers notice that I am going out and negotiate how long I get. My final visit of the day is at 6pm and that’s when they come to get me ready for sleep and put me to bed for the night. 6pm bedtime! I feel like I’m a toddler again, not a middle-aged adult. I like going out in the evening and going to see musicals or visiting folk clubs or even, friends, but I can’t do it any more without massive amounts of forward planning. Whatever I want to do, I have to make sure I’m home by 8.30pm because the care agency doesn’t provide carers who work after 9pm. I’m looking to having Direct Payments which will mean Social Services give me money to hire my own carers which will give me so much more control but that is still in the pipeline and has not become a reality as yet.

Essentially, looking back over the past year has been a bit of an eye-opener. So much has changed and I am having to get used to a very different life from the one I had before. It’s a life I never really expected to have. I suppose I might get used to it eventually but that doesn’t mean I like it. I don’t. I just want to be the me I have always been and live my life the way I would like to live it but that, I suspect, that is never going to happen again.  

 

A couple of days ago a friend of mine asked me to write an article or blog for a local disability organisation about what I use my computer for. I think she is after something that dispels the mysteries and shows how essential using a computer is becoming in the modern age. So here goes.

Right. What do I use my computer and my access to the internet for most? Well, I suppose that one of the main things I use it for is my addiction to social media. I spend most of my time chatting to people worldwide about what they are doing and what their families are doing. Thanks to my computer and the internet I am able to stay in touch with friends in Canada, with family in the British Virgin Islands and with old school friends who now live nationwide. The internet can also help if you are looking for people you have lost. I have recently found a cousin I’ve not seen or heard from in 25 years who is now living abroad and, a couple of years ago, I discovered, thanks to the internet, that a friend from school that I last saw in 1979 in Chester, 280 miles from my home, now lives a very short bus ride away in South London. We are now able to chat all the time online and we get to meet up fairly regularly for lunch and a reminiscence filled gossip in person. It’s so good to be able to do this and, without the internet, it would never have happened. Then there are my new friends. The world is my oyster. I am now in regular contact with several people I have met online who live in Canada and I was chatting with someone in Australia for hours only last week. People I could never have met any other way.

Then there is my father. I keep in regular touch with him by phone but we also email each other quite a lot. He sends me pictures he has taken and little bits of news of what he and my step-mother have been doing which is wonderful and I can, in turn, keep him up to date with my doings and those of my children . Dad is 81 and my step-mum is 83 so, as you can imagine, it’s great to know they are both OK and still enjoying life to the max and it stops me from worrying.

Then there is my writing. I spend a goodly part of my day writing and It’s something I wouldn’t be able to do at all without my computer and internet access. More than anything in the world I have always wanted to write and be recognised for my writing and now I have the opportunity. I do blogs, like this one and I am also write fiction. As yet nothing published but I can but hope that what comes out of my head will be worthy it one day. The internet is invaluable for both sorts of writing for me. As a severely disabled person I am unable to get to my local library to do any research I may need to do but I now have the world’s best reference library at my fingertips.

Then there is shopping. I have just bought some new tops without having to leave my bed. I spot things I like the look of and before I know what has happened the postman knocks and the goods are mine. No fighting my way down a crowded high street or struggling in a tiny changing room for me, all done from the comfort of my living room. If I find that I don’t like something or it doesn’t fit I can just send it back. No problems there! My computer and the internet is also invaluable for more mundane tasks. I do my weekly shop online and the great God Tescos delivers it all, not only that but the delivery driver will even carry the bags inside for me and put them in the kitchen. And special shopping for birthdays and Christmas is fantastic. Only recently I managed to find a picture of my father’s childhood online home by using a search engine, bought it and gave it to him for Christmas. He was delighted and a more personal present I would be unlikely to find anywhere else.

So, what else can I use my computer for? Well, I can make sure I am receiving all the benefits I’m entitled to using a benefits checker such as Turn2Us and then, if I need to, I can follow links to the appropriate application forms and complete them online. I can look for advice and information on just about any subject I can think of. I can chat to other people who have similar experiences or medical conditions to me which is really good as a mutual support network. It’s so wonderful knowing that someone else has had the same thing happen to them and that I am not alone. Not only that but other people may have some hints and tips so what appeared to be an insurmountable problem has become just a little hiccup and nothing to worry about. I can also book appointments at my GP’s surgery, order repeat prescriptions, report maintenance queries to my landlord, contact my hairdresser

All in all, my computer is now my electronic lifeline. Only yesterday there was a problem with my broadband connection and I couldn’t get online, go one with my writing or anything for four or five hours. It was horrible! I was lost. Sure, I may have had to pay for my connection, buy a computer and learn how to use it but it’s not cripplingly expensive and I’m learning as I go along.

Being stuck in bed most of the time could be really dull and boring but my computer is my escape route and there’s no way I could live without it.  Friends and family, hobbies and support, retail therapy and essential shopping, advice and information, leisure and necessity, it’s all there waiting for me and all I need is a computer and an internet connection to be able to access it all.

This Bill must fail and not be enacted. I will be lobbying my MP and I would ask that all my readers lobby theirs.

Same Difference

Readers, we apologise if you already have this information.

However, recent comments on another post, by reader loozbitch, informed Same Difference that, if the Welfare Reform And Work Bill becomes law, it will remove the Work Related Activity Group component of ESA.

We have been aware for some time that the Government wanted to scrap the WRAG, but until now, we were not aware that the complete removal of the component has been written into a potential law.

We requested more information from reader loozbitch, who sent us this very useful document, written for the House of Lords, which clearly states that one of the aims of the Welfare Reform And Work Bill is:

• Removing the work related activity component in Employment and Support Allowance [ESA] and the limited capability for work element in Universal Credit.

We are very scared for the many claimants who are in the WRAG…

View original post 30 more words

Well, that’s interesting.

I am a Housing Association tenant and I have just received my quarterly residents magazine from the HA and I think I am being discriminated against.

Not me personally but me as a disabled person.

Apparently my area is a test area for Housing Association tenants who want to buy their own home under the Government’s much-trumpeted new ‘Right to Buy’ scheme. Now, I am not actually interested in buying, I am more than happy to go on renting, but I thought I’d read the article anyway just to see what was being proposed.

That’s when I found that I am not eligible, despite living in a pilot area.

Why, I hear you ask.

The reason, as usual, is simple. My impairment. The fact that I am severely disabled is proving to be a barrier once again. According to the article, some types of home and tenancies are not included in the pilot, including homes like mine that have had adaptations made to cater for a disabled or older person’s particular, disability related needs.

Now, that smacks of discrimination to me. The article is saying that, if the Housing Association had not made some adaptations because of my impairment nearly twenty years ago, I would now have the right to buy my house, should I want to. Because of those adaptations it appears I don’t have that right.

Now, I am happy to acknowledge that, before we moved into the house, the Housing Association made extensive adaptations such as wider doorways, a wheelchair accessible bathroom and moving the front doorway to accommodate ramped entry to the property. Those adaptations were done using a Disabled Facilities Grant (DFG) from my local Council. When we were discussing this with the Housing Association, back in 1997, we agreed that we would live in the house and pay rent for a minimum of ten years. We have done this. We have now lived in the property and paid our rent for sixteen years. We have abided by our agreement.

So, why does this mean that, should I wish to buy my home the way the Government wants me to, I can’t. My impairment prevents me from doing so many things, am I now to be prevented from becoming a home-owner because of it? That’s what it sounds like to me. Most people on my estate will be able to buy if they want to, disabled and older people who have had adaptations done, like me,  won’t. That doesn’t sound very fair to me.

I suspect that the issue actually surrounds the scarcity of accessible and adapted properties amongst the social housing stock in the pilot areas but that is not disabled people’s fault. That is the fault of the Housing Associations and, ultimately, successive Governments, for not building enough suitable homes for all the people who may need them. Why should disabled people miss out on a opportunity that is to be granted to so many other people? Why should we be left out in this great rush into home ownership? People with Housing Association homes that have not been adapted will be able to benefit from grants and discounts if they want to buy the property they have lived in for many years but not me or other disabled or older people. If we want to buy a house, we must buy on the open market without a grant or discount. We would have to pay more that a non disabled person buying a similar Housing Association home. That doesn’t sound very fair to me.

If I had the money, the time and the inclination to do it, I might consider instructing solicitors to take this matter to court as the discrimination issue it surely must be. People with adapted properties are not able to buy their homes and people with adapted homes are either older people, disabled people themselves or have a disabled person living in the property such as a disabled child and we are precluded because of this.

How much more blatant does discrimination have to be? As far as I am concerned, not very.    

Well, who would have thought it! As far as I can make out, I’m magic!

Actually, I’m not sure if it’s me or my wheelchair but it’s definitely one or the other.

It’s not all the time, of course, but it seems to happen, mainly, when I’m out and about. When I’m at home the sorcery is usually absent but when I’m out, well, it’s truly amazing how magic I am.

Firstly there’s the magic that happens when I go into a shop. Judging by the gaps that are left between rails and racks in clothes shops, my wheelchair transforms and its width reduces as we go in through the shop doorway. I start looking at the displays and, within seconds, find myself dragging half a dozen items round behind me after they have got caught on my chair or under my wheels. Shop assistants rush around trying to mitigate the carnage I’m causing but no-one seems to think of making the spaces wider. That would be too simple I guess.

And changing rooms! The medical profession could learn so much from changing rooms in clothes shops. Apparently, if I go into one of these magic chambers I will suddenly be able to stand and undress or dress all on my own. The fact that I can’t do this anywhere else is by the by, in changing rooms, it seems, I can. Unaided. The allotted space is never sufficient for me, my wheelchair and a personal assistant but that’s fine, I don’t need to try clothes on to see if they fit or if the colour or cut suits me, I can just guess. I know there are some disabled people who could get out of their chair, go into the changing room alone, try on the items and then come out without help, leaving their chair in the charge of their companion but surely there should be at least one changing room in each store that can be used by a disabled person who uses a chair and who has a personal assistant. Somewhere with a slightly larger floorspace that two square feet.

Then there are the food shops. The supermarkets. Not so super if you ask me but anyway. The magic here is the way these places seem to know what I want, before I even see it! They then, somehow, manage to beam whatever it is I have my eye on to the top shelf or the bottom shelf where I can’t reach it. It happens every time. Not only that but every shop assistant in the place suddenly becomes invisible. Well, either that or I do. Whichever it is I can sit there, by the shelf, for what seems like forever and the most I ever get is another customer telling me I’m in the way or blocking the aisle. They rarely ask me if they can help or if they can get something for me, just “Excuse me, you’re in my way.” And store staff? None.

The magic doesn’t stop when I come out of the shops. When it comes to pavements, I always thought that most people would be able to see an overweight, middle-aged woman in a large  electric wheelchair but apparently not. I seem to be invisible! I have lost count of the number of times people have bumped into me, walked in front of me, looked at me accusingly for being in their way or not seemingly seen me when I am in a queue, waiting for my turn at the cashpoint. It happens all the time. It’s as if I have an amazing cloak of invisibility that I never take off.

Black cabs seen to be bewitched too. They actually have the ability to cure me, according to the drivers. Almost every time I hail a cab, and one finally stops, I am asked, “Do you need the ramp?” Now, I don’t know exactly how many abandoned wheelchairs these drivers have seen littering the pavements around the country but my guess is, not many. Of course I need the ramp! How else do you propose that my chair and I get into your vehicle? It’s not rocket science! I haven’t been able to walk and get into a cab on my own for more than twenty years, what makes you think that today’s the day I’ll get the hang of it once more and how else do you propose getting my chair to my destination? Drag it along behind? I know some people who use chairs can walk a bit and might be able to get into a cab unaided but they will still need their chair to come too. Leaving it unattended, in a busy street, is just not a viable option.

Why is it that people seem to think that disabled people are all conjurors? For those people who were born with their impairments, they are human beings first and foremost and have been from the moment they drew their first breath. When it comes to those of us that have become disabled later in life, before our impairments happened we were just people. We had no special powers, no extraordinary abilities, nothing different at all. Whatever diagnosis any of us have been given it has not transformed us into some type of prestidigitator. We haven’t changed. We are not magic and I wish non-disabled people would stop thinking that we were. I don’t know what it is that gives some folk the idea that we are X-men and women but we’re not. We are people who happen to be disabled, going about our ordinary day-to-day business, just like everyone else. Stop deciding that we are all superhuman, we aen not. Think about how you would like to be treated and the sort of help you might need if we swapped places and try that instead. Stop doing and saying things that are of no assistance whatsoever and try again. It would make your life, my life and the lives of so many other disabled people, a whole lot easier and much more bearable.  

Last night, one of my female Muslim carers made an interesting comment. She echoed the words spoken by a Muslim woman who was on the evening news at the time, ‘Why just Muslim women?’

The report they were both commenting on was a story about David Cameron proposal that the government should spend £20m on providing English lessons for Muslim women? Both my carer and the woman on the TV said the same thing, practically in unison.

Why just women and why just Muslims?

Why not both men AND women of any nationality OR religion who don’t speak English?

The government have really cut ESOL (English as a Second or Other Language) provision since they first came to power, why not put the £20m into funding for everyone who needs it? It’s not just Muslims and it’s not just women who need help, many other recent arrivals could benefit.

We recently had some building and improvement work done in our house. The Housing Association awarded the contract to a local building company who subcontracted some of the work to other, smaller builders in the area. The guys who came to my house were very nice but barely spoke English at all which made things more than a little difficult.  It would have been very helpful if they could have had the opportunity to attend English improvement lessons before they started working in people’s houses but they never had the chance. And they still wouldn’t have had the chance even if this new £20m initiative had been in place.

Why?

Because they were not women.

They were Eastern European men.

They may have been Muslim, there was no way of telling and I didn’t ask but they were definitely men.

Thanks to the cuts Mr Cameron has previously made to ESOL provision in this country, there are now few lessons they could attend. There is ever decreasing help available for new arrivals who need to learn our language. What are people supposed to do, learn by osmosis? As far as I can see, it would appear so. Our local college in Lambeth has had to halve it’s ESOL provision over the last few years and this appears to be a story which is the same at colleges nationwide. Demand is there, provision is not.

In 2008 the Government spent £230 million on ESOL provision in the UK. By 2013 this figure had been reduced to £130 million and is set to fall by a further £90 million after the cuts that were made last summer.As a result ESOL participation has fallen by 22%. The demand is still there, some courses have waiting lists of over a thousand people, it’s money and investment that is lacking.

So will this new promise of £20 million help? Probably. A bit anyway. Some women will get a chance, as long as they are Muslim, but men and non-Muslims will have to go on suffering in silence because they don’t speak English..

And that seems, to me, to be discriminatory.

I don’t often say that a policy appears to discriminate against men, it’s usually women, but in this instance men seem to be losing out. As for the Muslim thing, what about other faiths? Or people of no faith at all? Don’t they need to be able to speak English too? According to Mr Cameron It would appear not and that is very unfair. Give everyone who needs it a chance, not just one gender and one specific belief system.

If we want immigrants to be able to contribute their skills and taxes into the national pot then we need to let them be on a level playing field with other workers. Cutting ESOL provision is a short term saving that will backfire in the long term and to focus exclusively on one gender and one faith is wrong and discriminatory to everyone else who could benefit who doesn’t fit the narrow criteria for help. Have some classes that are for women only if that is what people want and what makes them most comfortable but make sure the money is properly distributed so that as many people as possible can be helped. Current plans do not make sense and seem to have been badly thought out. Go back to the drawing board Mr Cameron and try again. You could do so much better. Stop playing with our money and invest it where it will benefit the most number of new arrivals of both genders and all faiths. If you do this properly it will, ultimately, benefit the whole country as well.