Thoughts on my first long powerchair trip

I went on my first long powerchair trip on Friday night. It was a 5 mile round-trip from Badsey to Evesham and back. On reflection, this was never going to be an easy journey. There are two routes that can be taken on foot. Unfortunately due to roadworks, one of those was not an option and so my wife and I were forced to take the other route, along the main road into town. This involved about a mile along a rural road with a 60mph limit, and hedges on both sides. Before leaving I checked through that stretch of road using Google Streetview to make sure that there was a path all of the way along. All seemed OK, so we set off.

Here are my thoughts on that journey.

  • My powerchair goes faster than 4mph. I think it probably manages 8mph. Excellent!
  • It doesn’t go as far as it should. The battery light was blinking after about six miles of use, not 24. Maybe a few charge / discharge cycles will fix that.
  • Using a powerchair requires planning to make sure that route and transport are accessible.
  • According to my wife, I operate a powerchair like I play Mario Kart. I’m choosing to take that as a compliment.
  • You can’t operate a powerchair like you play Mario Kart. It likes to stop before making the next move.

And some more problematic thoughts.

  • Getting to a junction and finding no dropped kerbs and therefore no way to leave the pavement and cross is frustrating.
  • Having to backtrack to the last dropped kerb is also frustrating.
  • Having no matching dropped kerb on the other side and having to take the chair along the road is dangerous.
  • Curved dropped kerbs that go round the corner are a pain. Wheelchairs are supposed to take the kerb at 90 degrees to avoid toppling. Having to turn 45 degrees to do that is irritating, AND the pavement is at odd angles that push the chair to one side.
  • A dropped kerb that crosses the pavement all the way to someone’s driveway makes the chair go down then up again. Having these repeatedly all the way along the street makes the chair go up and down continuously. They can also make the chair swerve into the road unless paying perfect attention and deploying light-speed reflexes.
  • A dropped kerb is supposed to be dropped. That means going down to road level. Not two or three inches above it. When a chair goes over that, it lurches wildly back and forth.
  • When a too-high kerb is combined with a round-the-corner curved dropped kerb that simultaneously goes up a hill on one road and down a hill on the other road, the combined angles plus speed necessary to climb the kerb mean that the chair will topple.
  • Flailing wildly when going over will wrench muscles, twist the back, neck and shoulders, and cause extreme pain and swearing.
  • Finding no way to get from pavement to road to pavement so that you can cross is bloody annoying. Did I already do that one? Well I’m doing it again because it’s BLOODY ANNOYING.
  • Tree roots growing under the path and tearing it up can lift one side of a chair, causing it to tip disturbingly to one side.
  • Cars parked on the pavement deserve to be scratched as I go past.
  • Pavements full of pot holes, cracks, patches and worn away surface are not just a minor irritant, they make the journey a hell full of dragging, rattling, lurching, bumping and worse.
  • A path is supposed to be wide enough to use. Six inches of goat trail with smashed up tarmac surrounded by tall grass and weeds right at the edges on both sides is not acceptable. Grass to within six inches of the road edge is definitely not acceptable.
  • Paths so old that their height varies by several inches NEED FIXING. You can’t leave that.
  • I got stuck on patches of broken pavement so bad that one wheel went in a hole. Not once, but twice. I couldn’t avoid the hole because the grass verge had covered the pavement.
  • I had to negotiate places where the broken, narrow path went through potholes, gravel and old stones at the edge, merged with driveways, with grass covering it at 45 degree angles. I lurched wildly. I nearly went over. And this happened in at least three places.

I’m going to stop there. There are more things, but I have complained enough for people to get the idea. OK, so most of the time I won’t be trying to travel from my village to the town, but I should be able to. It should not be a challenge, it should be a nice smooth ride along tarmac or paving slabs. Not a wild lurch along broken, grass-covered ancient pathway.

Oh, and I did manage to get to town and back, but not before the shops had closed, rendering my trip to buy cheesecake completely meaningless. I enjoyed a coffee at my sister’s house instead.

Fear and mobility

My new power chairI have been given a power wheelchair that used to belong to my wife’s grandfather. I am very grateful to my wife’s grandmother for giving it to me. It will be very useful when I have to go to the local shops, or be somewhere where I am expected to stand around or stay on my feet a long time. It will also mean that I can go to protest rallies which I has so far been left out of. I have a problem though. I have a very large psychological barrier to actually using it.

So what is the problem stopping me using it? Put simply, fear. Fear of what people will think and say, and embarrassment at people seeing me in it. I have previously written about similar problems with using my walking stick in my blog post Embarrassed to be me, where I talked about fear of abuse as well as fear of people thinking that I use a stick to look more ill and claim extra benefits. With a chair, I have an additional fear that people will think I am trying it on because they have seen me walking. My neighbours will have seen me in various different levels of health; on my best days they have seen me stand for a couple of minutes talking, and stroll across to the car park, get on my motorbike and ride away. More often, they have seen me walk using a stick, sometimes leaning on it more heavily than others. Now, they will also see me leave the house in a chair. To people that know me it is obvious that I have a variable condition that leaves me less able to move or stay upright the more tired I am or the more pain I am in. To people that see me away from the house, I worry that they won’t understand this and will simply think that I am faking my illness to get money from the government. I also worry about abuse if I stand up from the chair for a bit – I don’t have to stay in it all the time, but some people seem to think if a person can walk at all then they should always walk.

I also have a problem using the wheelchair, and, indeed, the stick, because I tend to be stubborn about what I can do. I start out in little pain and able to stand and walk, so I insist on going out without mobility aids. It doesn’t take long for me to start falling over because of exhaustion and pain though. Sometimes I can manage more than other times, and so I can quite often be capable of walking to the village shop, perhaps with a stick, and maybe walk back again too without too much pain, but the payback afterwards is high. I should use a wheelchair in this situation because that way I won’t exhaust myself just from going out to buy milk and won’t have to spend such a long time resting to recover.

When I talked about my concerns on twitter a friend sent me a link to this blog post which summarises the problem nicely. The writer has help at home with tasks like showering and dressing, yet she tries to do these things herself anyway.

“So last Thursday, when I had to explain it all over again, I told her that I *can* do all those things, but that I had to pay a price for it. And I showed her that my wrist was dislocated because of the transfer I just made. And then she said the most wonderful thing. She said: “but if your joints dislocate when you do something, that means you can’t do it right?” And she was so right…”

The problem is that she can complete these tasks, but the result of doing so is pain or even dislocation. I can walk to the shops (sometimes!) but the result of doing so is pain and exhaustion, leaving me helpless for some time afterwards.

Today I took my new powerchair out to the local shops for the first time. It’s not far, just five minutes walk away, but it’s a big step (roll) forward in making myself use the chair. I was worried through the whole journey, worried about what people would think, but I think I am getting there. I intend to use the chair to make local trips a few more times, and then I will take it out to the protest in either Birmingham or London on the 30th. I hope I will get over my fear by then.

Related links

Embarrassed to be me

Rise in abuse of disabled people is shocking but not surprising

A new definition of being able

Embarrassed to be me

Sometimes I have to use a walking stick. I walk with a stick because sometimes the pain is too much to put weight on my legs, or my muscles are too weak to hold me up, or I am too dizzy and lack the balance to remain upright. I especially need the stick when I am standing still as without it I can fall over due to all of the above.

I hate my walking stick.

I hate it because it is awkward to use.

I hate it because it prevents me carrying anything with that hand.

I hate it because it stops me holding hands with my wife.

I hate it because it is noisy on the pavement.

I hate it because it allows me to walk further when I should stop and rest.

I hate it because it transfers the pain from my legs to my hands and arms and back.

But most of all, I hate my walking stick because it is a symbol of my weakness. It is a sign to anyone that sees it that I am sick. Weak. I feel self-conscious when I use it, because people look at the stick and judge me. Many of them see a thirty-something man with no visible problems using a walking stick and decide that I don’t need it. Some of them assume that I use a stick in order to look sick to get benefits. (Even when I wasn’t on benefits.) Some of them actually question my use of it, and in the worst case, verbally attack me, even swearing at me.

So I leave my stick at home. That doesn’t work out so well, because what happens is that I walk all the way to the doctor, the pharmacy or the shops without too much of a problem apart from stopping to lean on a wall every so often. Then comes the problem. I get tired. I get pain. I am out, ten minutes walk from home, rapidly losing the ability to stay upright, and I don’t have a walking stick. Having to ask for a chair and stop for a fifteen minute rest in a shop is even more embarrassing than using a walking stick in the first place.

I have got around the problem of not having my walking stick when I need it by using a folding stick which can fit in the (large) pocket of my trenchcoat or in my bag. It’s still a pain to carry around so I don’t always take it, but it’s better than never taking it. I can also surprise people by pulling the stick out of my pocket suddenly and having it click together in a most satisfying way!

Given my embarrassment at using the stick, you can imagine what I think about using a wheelchair. I’ve never used one but the thought fills me with fear. Fear of what people will think, especially if I get out of it occasionally when I have no need to be in it. People do not understand that health problems are variable and that it is possible to need a stick or a chair on some occasions and not others. Or that I could use a wheelchair for a journey but walk around inside the building at the end of it.

I was thinking about all of this again because I have been offered an electric wheelchair that used to belong to a family member. My immediate response is NO NO NO but actually that is stupid of me. There are many times when it would be useful to have one, and there are plenty of occasions when I could actually use it to get around the house. There are times at the moment where I cannot get from the bed to the bathroom or the kitchen, and so I go without food and drink until someone can arrive and help me. I will soon be living several miles from my nearest helper rather than next door, but with an electric wheelchair I could get food and drink several hours earlier than I would otherwise. I might even get more hours in the day because I would start to feel better earlier.

I have to learn not to be embarrassed to be me.

 

The benefit claims ordeal

Today I made the major step, to me, anyway, of getting my ESA50 form filled in at last. ESA50 is part of the process of applying for Employment Support Allowance, which should be my income while I cannot work. It is a form where I have to describe in great detail every part of my illness – each problem that I have, every drug that I take, and describe how it affects my life from walking and sitting to washing and going to the toilet. This daunting form has been hanging over me for weeks because I have been unable to face filling it in.

To recap, I have had ME for more than a decade, with all of the resultant problems like extreme fatigue, muscle pain, brain fog, insomnia, all much worse after any movement or activity. I also get frequent migraines, sometimes every day, and have suffered from those all my life. I’ve had diabetes for two and a half years, progressing at a disturbing rate, and a host of other problems as well. All of that combined makes me pretty flaky when it comes to getting anything done and it has ensured that I have a very intermittent work history. I’ve managed to work some years, but I have been stuck in my bed or my house for years at a time too. The last few months have been particularly bad and to cap it all off I started to get depressed about it all. I suppose it isn’t really surprising that I ended up suicidal given all of my health problems plus a sprinkling of my business going down the drain as a result, and imminent homelessness.

Unfortunately filling in an ESA claim form is very difficult for me. The simplest problem is that I can’t use a pen to write more than a sentence before my hand is in excruciating pain. Then there is the problem of concentrating enough to write every detail without forgetting anything or making mistakes. My ME causes severe brainfog a lot of the time and I often cannot concentrate or remember anything. Since it is also important to write problems in a way that correlates to the assesment criteria, most people don’t stand a chance of getting this right, never mind trying it with my concentration problems.

The biggest problem preventing my filling in the form has to have been my depression. Since I became depressed a few months ago I have frequently found myself paralysed by despair, literally unable to move, unable to do anything except focus on despair and on all my problems. Attempting any serious task or responsibility has usually resulted in this state and the ESA form has been the biggest trigger of them all.

It isn’t just filling in the form that has been difficult for me; after I applied I also had to deal with the DWP claiming that my sick note had run out after a week and demanding another one, despite it being for a month, and with them claiming that I hadn’t told them that my wife was working, when in fact they were told at the time that I applied. These two problems added to my mental block on completing the form.

Anyway, the story does get a little bit better. My sister works for a charity that is part of the DIAL network. (Disability Information Advice Line) She pointed out to me that I could get help from my local DIAL and so I gave them a call. My form was already late, and so despite their normal waiting time of six weeks they managed to get me an appointment within two weeks.

Today I met with a lady from DIAL and she went through the form, asking me questions and breaking down each question into small parts that I could answer. She took all the information that I told her and wrote it on the form in a  structure that matches the assessment criteria. She also talked to me at length so as to build an idea of everything that needed to be written in as additional information and wrote a whole A4 page about my illness. Having done this lots before, she already knew a lot of the problems that I face and so I did not have to drag it all out of my brain fog.

Despite all her help, the meeting was two hours long and was an ordeal for me to get through. I had already taken my maximum dose of painkillers to get there for 10am, and spending two hours in a chair in an office at the job centre was extremely difficult. At one point I couldn’t answer her questions any more and I was encouraged to take a rest – I ended up lying on the floor! I stayed there while part of the form was filled in but eventually had to get up which was even harder work and very painful. By the end of the interview I could hardly speak and barely stand but I was helped to stagger back to the waiting car and she even carried my bag.

So after all of that, I have a form filled in with far better answers than I could give, and probably the most accurate portrayal of my illness that has been written so far. (I did actually show her my blog post, A morning with ME, and was told that I should print it out and include it with my forms.) It is a great weight off my mind, or at least it will be shortly when I photocopy the form and finally post it. I will definitely ask DIAL for help with any future applications, assuming they survive government budget cuts.

My next step is to try not to worry too much about my impending Work Capability Assesment.

 

The role of online activism

Much has been said recently about the role of the internet and online activism in protests in the UK and in more serious uprisings in places such as Tunisia and Egypt. Many people speak derisively about the use of social networks in activism as something that will never bring about any change and as a waste of time. Clearly some people disagree, for example the Egyptian government recently shut down most of the internet across the whole country in an effort to stifle the protests there.

There are two natural uses of social media in activism. The first is in simple organisation of events, typically on Facebook. People are now used to responding to party invitations issued as an “event” on Facebook and it is a logical step that protests and marches be organised in the same way. It is now standard for protests everywhere to have a Facebook event page and for many people to indicate on that page that they will attend.

The second natural use is as a way to keep in contact which replaces the mailing list. Groups such as 38 Degrees and Amnesty are good examples of this. Their members sign up on their websites, Facebook and so on, and then receive messages indicating progress made and issuing calls to action. The action is mostly in the form of emailing or writing a letter to various politicians but also covers making sure that news media are aware of the situation and give it coverage. It is clear from recent successes of online campaigns that they do make a difference, even without physically going out into the streets to protest.

Now there is a new use of social networks, and twitter in particular, and that is for online activists to support and promote the “offline activists” that are actually out there on the streets protesting. Those of us connecting up information at home have a big role in it all. We’re collating media, commenting, and linking in all the people that are following the protests, keeping it a cohesive whole.

During every demo, we are frantically passing information to people on twitter, facebook and through blogs to raise awareness amongst our friends that would otherwise be oblivious to what is going on. We have also orchestrated campaigns to get people to complain to the BBC and other news outlets about the lack of coverage. (There have been many many more protests than have been covered by the news, but only the ones with vandalism or violence seem to get coverage.) During the protests photos, video and comments are continuously sent out to twitter from the scene. Activists at home watch the stream of information coming in from those that they follow and via the relevant hashtag. We read the comments, look at the photos and videos and retweet the best ones. The ones that get retweeted by enough people end up causing a retweet storm, appearing in the hashtag timelines over and over again. We pick the best stuff from Facebook and twitter, and write about it on blogs or post it back to social networks where our friends that aren’t directly involved will see it. Once the protesters have returned home and looked at twitter, it is the most popular items that they see. In this way the ones at home have selected the best items and passed them on to all the protesters both to let them know what was happening at all the other protests and to allow them to share the best bits with their own family and friends.

Another aspect of this process that takes place online during the protests is the sharing of information between protesters. As many of the protesters post up information about what is happening around them, others nearby can see and react to this information. The point at which I first realised this was during the protests on the 30th of November. Protesters were desperate not to be kettled by the police and so they broke into groups and scattered across London at the first sign of police blocking anything. As they ran across London, many people sent messages to twitter asking where the police where, and others tweeted about where they had seen the police. People at home responded by passing information from the ones that knew to the ones that did not, and also added in information taken from watching live TV footage. Protesters on the ground actually changed direction based on this information to avoid the police. At other protests twitter has been used to clarify information about how best to leave an area, to find people, and to warn people away from danger such as areas where police where using batons or charging with horses.

So useful has this been, that a group of clever people have taken this whole process and packaged it up into a system called Sukey. Sukey collates information from all the protesters, the police, and the people watching TV or just retweeting information from the scene, and then feeds it all into computer algorithms that watch for trouble spots forming. Sukey then alerts people at the protests via text messages and through maps on their mobile phones and hopefully gives them enough warning to get away before any trouble. This worked admirably well on the 29th of January and even forced the police to be more open and provide more information. My only regret is that Sukey may have made some of my contribution redundant!

In this world of online activism it is still of vital importance that people actually go out and protest in person. To this end there have been quite a few events, workshops and campaigns aimed at turning online activism into offline action. One blog that you should look at for this is Beyond Clicktivism. While it is vitally important for people to have real involvement away from the internet, there are many people that are unable to do so for various reasons including responsibilities at home or work, or illness and disability. For these people online activism is the only way that they can play a part.

Online activists, then,

  • Write articles and blogs about the cause, both for activists and for the public
  • Sift through photos, videos and articles then promote the best ones to other activists.
  • Present the cause, and news about events to activists and non-activists
  • Convey information between activists, keeping them linked and safe
  • Keep a continuous presence on social networks, thus keeping other people engaged
  • Allow people that cannot physically attend protests to play a large part anyway

I was fascinated by a recent article from Market Sentinel and a network graph about connections on twitter related to UK Uncut. The connections are assessed by how often what a person says in connection with the #ukuncut hashtag is retweeted by other people. This is a very rough indication of how involved each name is within UK Uncut. The graph does not show the names of leaders, but the names that the most people find interesting enough to pass on. Because anyone can tweet on the #ukuncut hashtag the graph also shows some of the trolls – unpleasant people trying to bait and taunt others – that were retweeted by other detractors of UK Uncut.

A graph showing influence and connections within UK Uncut on Twitter
Network graph of people most active on #ukuncut - Click to show the full size version