Making a differenece

I must have suddenly hit that age, or there really are a lot of desperate people in need of money or wanting to come to the UK. In the last few weeks, I have been hit by so many men on Twitter declaring their undying love, on their first or second tweet to me, that it has quite simply become funny. I guess they look at my picture and read my bio and think here is a target, someone perfect for scamming. I have had the odd one or two in the past, but the numbers have just shot up recently. Yesterday, I think I actually hurt one by accident. He wasn’t like the rest, he had at least taken the time to send me about 15 tweets a day for over two weeks, all in response to one of my tweets. In fact, adding him in as one, I think might be a little harsh as I wasn’t even sure if he was male or female until yesterday. No, I wasn’t being thick, but a foreign name and no avatar make it very hard to work out at times. Last week I started to wonder if my friend was looking for something else, but I couldn’t be sure. Then yesterday, I answered a tweet from him and in it I mentioned Adam, I suddenly received an apology for being friendly with me and promise not to bother me again. He had said one thing I took with a pinch of salt last week, that he was planning to come and see me, and that turned out to be what he was apologising for. People say all kinds of things, something like that felt very unlikely to ever get any closer than just those words, so I had ignored it. In fact, I had totally forgotten it had even been said. Now I feel guilty for just being friendly with someone on the other side of the world. Social media has created this mad world where what we do and say, isn’t like anything we would ever do in real life. A couple of generations ago, you wouldn’t have spoken to anyone without a social introduction, now we not only do we talk, but say the most outrageous things and even personal things, without a second thought.

I have frequently said that if there was one quick and economical way of helping people who are disabled, have a chronic illness, or mental issues and the elderly, is to put them online. What it would cost a health authority is minimal by the saving they would gain from the less frequent visits to doctors and hospitals. Social media is a gift still waiting to be tapped into by those who would gain the most. Loneliness is a killer, and I for one don’t think I would be dealing with my health so well if it wasn’t for everyone that I have met here online. Well almost everyone, there are a few that I could have managed to get on perfectly well without, but the good ones, they out number them with ease. I can say with surety that the majority of issues I have had online have been brought about because of my high number of followers and people that I follow. The numbers alone bring in a degree of nutters, a number of scammers and some, well some that shouldn’t be online at all. I can say that with surety as I didn’t even notice them until my profile level was up over hundred thousand followers, then they all started to appear in droves. To the average user, this place is a godsend and should be utilised for it’s benefits.

When you live with a memory like a sieve, trying to hold multiple conversations with people all over the place is hard. I do try to remember all their personal stories and their reason for being there online, but it’s hard. Just as I am useless with names and faces, I am useless with small chat details, especially when people vanish for weeks and then suddenly reappear as though we were chatting yesterday. It is a difficult world to keep hold of, even more so when they suddenly change their avatar, which was at least a clue to me as to who they are. Trying to remember of a hundred thousand individual and very different followers, is impossible, yet some seem to expect me too. I love my online life and all the people it has brought into my circle of reach, but I can see that it is going to get harder and harder as time goes on, to just make sense of it all. One of the reasons I gave up on Facebook was because people had different names and avatars from twitter, but they expected me to keep track of it all. I couldn’t and it made life harder than I could deal with. Don’t worry, no I don’t intend to give up on Twitter, but please be reasonable when dealing with a sieve and accept a simple fact, you or part of you, might have fallen through one of those holes, not intentionally, but because it just happens.

To date I haven’t tried to use Adams smartphone or even a tablet, I am still content to be sat here with my beloved desktop computer. I have though thought about making a change, not yet, but in the future. With my legs slowly going, I can see the day will come when I can’t clamber out of my chair and make my way to the otherwise inaccessible office space. It appears to me that technology may have actually come up with a new form of computer conveniently at a point in my life that I may need it. I have to say I was totally against them at first. Clearly I wasn’t the only person who looked at them and spotted a problem, everything about them was too small. I have noticed that they are slowly getting bigger, which might just mean that my overactive fingers tips might be able to actually to touch just the thing I want, not ten others at the same time. The only thing that worries me is that I can’t actually go anywhere to test run any of them. It will be a case of pot luck if I choose well or not. The internet may be here for me, but finding the correct access point to match my health needs, is far harder to get. Although I now have little doubt that it is out there somewhere.

In some ways, one of the beauties of being online for many I am sure is the fact that they can be totally anonymous, especially if they have a disability. Suddenly, online all of that can vanish and they are just part of the community. No one has to say anything about their health unless they want to, I can see why some find it a wonderful freedom. I chose to be upfront and totally open about everything and I know that is what draws many to me. They know that what I say is true and that I at least believe every word to be accurate. But that actually puts a pressure on me that I never expected and it was worse on Facebook than anywhere else, people ask me for advice. I have frequently been stunned by the some of the help that I have been asked for, as though I am an agony aunt and one with a knowledge of every single thing in the world. I have lost count of the number of times that the words “I know you will tell me the truth” has been in a tweet and 99% have nothing to do with health. I guess all of us find ourselves in places we don’t expect to be, but this one really bemuses me, as I am just an average person who has spent the last 8 years indoors. What do I know about the outside world? Nothing, any longer.

Although I can understand why some might want my help, for the life of me I can’t understand the next oddity that being online has brought me. Of all the things I expected that being a high profile person online would bring my way, not once did I expect to find myself almost daily sitting looking at a single part of the male anatomy. I’m sorry, but I just don’t get it? Why do some men think this is the way to get attention positive attention from a woman, disabled or not? All it gets from me is a quick report to Twitter, followed by being blocked. After just over 3 years on Twitter I have in the last 18 months been bombarded by tweets and follows of this nature and trust me, it’s not what you want to see while sitting eating your breakfast. Equally, neither do I want to be staring at the female equivalent. I have over the years heard on the TV that there is a huge issue with porn online. I can confirm that and add that you don’t have to go looking for it, it presents itself over and over again. Yesterday alone I blocked 15 Twitter accounts.

I don’t think that I could be happy if I didn’t blog and tweet. It is now so much part of my life that being without it for even a day would leave me at a total loss. I have completely replaced what the outside world gave to my life, but being here. I doubt that when the world of social media appeared that anyone who was writing the programmes even once thought about the housebound and disabled. I doubt that we were even a flicker in a dark corner of their minds, but this has been as of much of a positive impact on my health as my meds are. I once feared that being housebound would bring an end to my working life. It wasn’t I just moved it all online. When redundancy and not being able to find a single company interested in employing me, despite thousands of emails and applications all done online, I joined the world of social media. Computers have been in my life for the past 19 years, in ways I never once expected or thought possible and I can see them now being with me to my final days. I don’t normally envy people at all, but I do envy the generation now growing up, as they have the power of the world at their fingertips. Throughout their lives, they will naturally live within two world, connected in ways that we can only now imagine. Should one land up like me housebound, I doubt their lives will skip a heart beat, their lives will just naturally go on. I know I am lucky, I am the first generation still heading into this bright new world where acceptance is automatic and apart from those with a desire to show off their most unattractive attributes, I love every single one of you and thank you all for letting me into your lives.

Please read my blog from 2 year ago – 20/09/2013 – Reaching the world

Another day another post and what happened to the rest of this week, how on earth did it get to be Friday? It has been one of those weeks when I have slept so much that I actually feel as though someone has stolen a couple of days from me at the very least. I don’t suppose it really matters but…

Not quite 140 characters

I was asked a question on Twitter yesterday which read “How do you feel about automation in conjunction with #live #SocialMedia #engagement”, which was clearly something I wasn’t going to be able to answer in 140 characters. I know that scattered throughout my blog you will find posts that would in part answer it, but I also know that not one of them would without asking many more questions to get a full answer. I honestly believe that without social media that my life would be totally different, I have written fully many posts that say how important both Twitter and blogging has been for me and how a fortune could be saved by the NHS by give those with chronic illness or simply living alone or just getting on in years, if they gave them all a suitable device to their needs and basic some training. Loneliness and depression numbers would drop dramatically as quite honestly it is a lifeline, but that is only a tiny part of the question. Automation on the surface sounds like a wonderful aid for so many people with disability, I know I have watched on TV the steps being made that will hopefully one day give many people total freedom from wheelchairs and so on, but I watch them also with the feeling that none of them are practical or usable on a daily basis. We are still years away from developing true useable aids for people who have walking issues of any sort, where we are now is quite simply an amazing stepping stone. It doesn’t matter what the aid is, for it to be used and accepted by people like me, they have to easily used without any aid from anyone around us at any time. A true aid allows us to get on with life as though we don’t have a disability, of all the ones that I have found useful, have turned out to be the low tech solutions rather than the high tech ones and that isn’t because I have a problem with technology.

I have two great examples, the first one was when I lost the use of my left hand, my PC had a programme on it that was supposed to mean that I could use it without a keyboard all I had to do was talk. I promise you I really did try, I tried and tried, but it just didn’t understand me, no matter what I did, it wasn’t helped by the fact that PRMS along with a lot of other conditions means that you at times stutter or slur your words. It did start to learn, but I was still quicker typing with one hand, but I decided I was going to try to use it for work in the hope it would learn faster. It didn’t recognise Excel spreadsheets, nor did it work with any of the formats I used for programming any of the Microsoft office products or any Visual Basic environment at all and did nothing no matter what I said, by the way, it was a Microsoft product. I have since tried other products, but the issues remained the same, they just couldn’t deal with the silences while I tried to think of the next word or with stuttering, I gave up on it totally.

PRMS destroys the brain, very much like people with Parkinson’s or Dementia, our brains don’t hold information in the same way and if new items are too confusing by requiring you to use multiple menus in different screens, we get lost. If you add into that controls that have small buttons that are difficult to use with poor dexterity or poor eyesight, lack of concentration and memory issues that leave us staring blankly into space for what to do next, well things like our new smart TV becomes a one-eyed monster sat in the corner of the room goading me. Just 5 years ago I would have had that thing understood to a tee in at most a couple of hours, without trying to understand their small print instruction manual, I’ve never used one. I have always learnt by exploring and often found shortcuts not mentioned anywhere, they were the kind of things that I as a programmer would have created simply for me and for ease of getting around whilst I was still building the program. These days, well my brain goes into a frustrated spin, I can’t deal with the small fiddly control and trying to read what is on screen. My poor dexterity means I land up in places I wasn’t trying to go and when I do get there, one tiny touch can throw you right back to the beginning or I get annoying messages telling me what I already knew, I have done something wrong. Instead of two hours, it has taken my two months to get to grips with the most basic side of it, I know it does a lot more, but I can’t deal with it just now, I can’t deal with it frustrating and how it winds me up, for what, a TV?

It isn’t only gadgets that cause us problems, I wrote a post at the beginning of this year as I had just discovered that parts of the internet are being closed off to us as well, down to nothing more than thoughtless programmers who can’t seem to understand that not all of us are the same. If the world is to stay open to all of us, there is one rule that right now is hard to apply, because of the way all technology is made due to the fact it itself is still being developed, that rule is “Keep it simple”. No one is hurt by finding that a five-year-old can understand how to use the washing machine, but nearly everyone is hurt when they find you have to have a degree in advanced programming. To me, it doesn’t matter what it is, what this wonderful new advance in technology does, if I can’t use it, it’s just an expensive waste of money I don’t have and time I am not willing to lose when every minute of my life is now counting down. Automation has made mine and everyone else’s lives easier, that is clear to everyone, but if it is going to continue to be, it has to accessible to everyone without it being priced out of our diminished pockets and it has to arrive in a form that we can use it with ease.

If I could afford it and if I knew before I had to spend a fortune on it, remember I am housebound, I can’t go anywhere to try something out and companies don’t let you test software for clear reasons of copyright, I would now be looking for a voice-activation package that would work for me with the gadgets I have and the platforms I use. I know already that my arms don’t always want to be typing and I know that I would have far more time to just relax and do other things if I could just sit here and talk to my PC, I also know there will be a time when my vanishing energy will destroy all the pleasure that the web brings. I along with millions of disabled people for the foreseeable future will eventually be both priced out of and mentally barred from being part of the wonderful new world that is slowly being filled with exactly the things we really need, the things that could and should be make our lives better.

Please read my blog from 2 years ago today – 26/02/13 – Changes 

One day on and I still don’t remember what I was so desperate to write about yesterday, but last night I went through the identical strange sensations apart from the wriggly thing, that didn’t happen. I have to admit I did find myself wondering if I had some sort of worm, clearly I have watched to……….