Living with an invisible disability

I read a letter in our local paper recently, in which someone was complaining about what he called the “misuse” of the disabled Blue Badge parking scheme. He claimed to have seen many people, with Blue Badges, park in our local disabled car parking spaces then “leap out” of their cars and “stride” into town.

Now, I have no doubt whatsoever that there are some people who misuse Blue Badges. Someone might be a carer or relative of a Blue Badge user and use it occasionally to make parking easier (this is a criminal offence – I think some people are not aware of this fact). There will also be some people who are such good actors that they’ve been able to pull the wool over the Blue Badge assessors’ eyes, or whose condition has improved since they obtained their Blue Badge. The former reason is less likely, in my opinion, as I have attempted to get a Blue Badge and believe me the assessors are harsh. I didn’t get one.

However, there will be even more people who have a hidden disability. If you saw me get out of a car and walk away, you would not for one moment think I had mobility problems, particularly on a good day. You can not see the pain I have to ignore to get up and walk. You don’t know that I can only walk a relatively short distance before I need to rest or stop. I don’t use a stick or crutches. I don’t use a wheelchair. In order to lessen my pain, I have to walk fairly quickly, as walking slowly is agonising. Perversely, not walking is worse for my general pain levels, so I will often walk despite my pain because, in the long run, it helps.

Over the years, I have come across a lot of “disable-ist” thinking. One of my former clients, on being told I had a disability, was shocked when I turned up to our first meeting without a wheelchair. For him, disabled meant wheelchair-bound. I often describe myself as disabled and get looked up and down with disbelief. And I know there are thousands of people like me out there, living life with pain, deafness, mental health problems, learning difficulties, head injuries…the list goes on and on.

For me, one of the most disabling aspects of my conditions (which are chronic pain in my back, legs, shoulders and neck plus a mild form of cerebral palsy) is the fatigue. People who are not living life with a chronic illness can not understand the amount of energy it requires to get around each day. At the moment, because my neck and shoulder pain has flared up over the last nine months or so, I am so tired by the energy needed to get up and get dressed that I have to go back to bed for an hour afterwards. This lack of energy has been brilliantly explained by something called The Spoon Theory , which was written by a woman in the USA who is living with chronic illness. I would recommend that everyone reads this theory, as it explains so well the way chronic illness affects your energy levels and how those of us who live with this have to plan, prioritise and pace everything we do. On the excellent Pain Management course I attended some years ago, these were referred to as the three “Ps” , and they rule my life.

For example, tomorrow I have work in the morning (I can only manage three hours a day each weekday or my body lets me know!) then I am meeting a friend for lunch. I will then have the recorder group I run come round to my house in the evening for a vital rehearsal before a performance this weekend. I try not to let my disabilities stop me from enjoying my life, so in come the three “Ps”.

I have made sure that I have nothing to do this afternoon or evening. I will probably go for a walk, but other than that I will do restful things, such as napping, colouring (which really helps me destress), reading and watching TV. I may well go to bed early. Tomorrow, I will probably limit my work to two hours (I work from home, so can be flexible). I will then go out with my friend. This is always good for my mental health, but exhausts me physically, so I will come home and sleep for at least an hour. I will then chill out (as above) until my recorder group arrive, another activity which I love to do, but which exhausts me physically. Once they leave (around 8pm) I will probably go to bed. If you read this last paragraph back, you can hopefully see that I have used the three “Ps” as effectively as possible, leaving room for the other thing which I learned at Pain Management, which is that “some things are worth it”. I will be more tired on Wednesday, but seeing my friend and running my recorder group will be so good for me personally that it will be worth it.

Every day of my life has to be planned this meticulously, every activity I add to my diary carefully weighed against any other activities I have that day/week. Sometimes, I have to cancel things I wanted to do because I have things I have to do, and I can’t do both. Then there are the days when I wake up so tired or in so much pain that no activity is possible, making me an unreliable friend and meaning I may have to cancel some other things later in the week to allow me to fit in essential activities (such as work) that I am not able to do that day.

S0, next time you see someone with a Blue Badge get out of their car and walk normally into town, don’t assume they are swinging the lead. They may well be living with an invisible chronic illness which means they really need that badge. In this time of increasing polarisation and a “them and us” mentality, please think before you judge.


Posted in Activism, Disability, Education, Health, My Life, welfare | Tagged , , , , , , , , , | 1 Comment

So. You want me to be happy?

On Friday morning, I was given notice that my EU citizenship will be taken away. The house in the sun – the one that I planned to retire to – is no longer for sale. My 2-year-old son wi…

Source: So. You want me to be happy?

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Being self-employed: what I have learned

Exactly a year ago yesterday, I qualified as a bookkeeper. Since then, I have been busy setting up my practice and running my own business, hence no posts on this blog for almost a year. I thought I’d share with you what I have learned so far.

  • Being self-employed is hard

Having to discipline myself into a daily routine has been one of the hardest things about being self-employed. For various reasons, I had not worked for some years before I set up my business, so I didn’t exactly have a daily “routine”. Now, I work for three hours every weekday morning and to begin with I found this so tiring I could barely do anything for the rest of the day. Partly, this had to do with my chronic illness, but mostly I think it was just having to concentrate so hard for three hours straight every day was difficult for my brain to adjust to. It’s amazing how quickly you learn to fit everything else around work.

If you’re self-employed the buck stops with you. You can determine your own hours, but if a client needs to see/call you outside those hours, you need to accommodate them, as there is no one else to do that for you. I’ve had evening meetings and phone calls, I often answer calls outside my work hours, and I’m often thinking and talking about work outside those hours too. It’s all consuming.

However, it’s not all bad. I can plan around my work hours, change them if I need to, go away when I want to (as long as I take work into account). The money I earn goes straight into my own business bank account, with no need to fiddle about with job sheets or payslips. I can work from home, and I am my own boss. I like that a lot.

  • Every client works differently

…and it’s my job to make sure I work with them. This means not imposing my working practices on them, but fitting around theirs. This has been one of the most valuable lessons I have learned. Some of my clients use the software I use, but some want to use the software they are used to, and I’m happy with that now. It took me a while to let go.

Some of my clients are highly organised and have all their paperwork sorted out and ready for me. Others just thrust an envelope full of crumpled receipts and invoices into my hands and run away. I’ve even processed one invoice which looked as though it had been being eaten by mice!

Now for a big lesson I’ve learned just this week – some of my clients don’t really need me. I have a client who was shocked by my first bill (I don’t charge much, but my clients do pay for my expertise) and asked me yesterday if there was any way they could input their own books and just have me check everything over at the end of the year. I’ve had to learn that sometimes less is more. I will be going over to teach this client how to use the software next week. However, this does free some time up for me to take on the potential new client who rang me yesterday.

  • Advertisers are a pain, and it’s easy to get conned

Advertisers will ring you constantly. I must get at least five or six calls a day, and it would be more if I actually answered them. I’ve had to change my voicemail message to explain that I don’t answer calls from unknown numbers or numbers I don’t recognise. They never leave a message.

However, when I was just starting out and needed to advertise, I had no choice but to answer their calls and I got myself embroiled in an elaborate scam which ended up costing me hundreds of pounds.

The first call I got seemed genuine enough. The amiable man on the other end of the line told me they produced a magazine for the emergency services, many of whom ran their own businesses on the side and might well need a bookkeeper. He told me that I would be the only bookkeeper to advertise in the magazine, which would go out quarterly for a year, and quoted me a very reasonable price. So I paid.

What I know now: when they tell you you’ll be the only one in your trade to be advertised in the magazine, then that is a hallmark of these types of scam.

About a week later, I got a call from someone from another publishing company all together claiming that I had agreed to take out an advert in “Fire Prevention” magazine. He was so convincing that I assumed I had agreed to this in my original phone call and I paid him too. This is the point at which alarm bells started to ring. I immediately rang my bank and cancelled the payment.

Within a couple of days, he was back again. I told him I thought he was scamming me and he acted completely horrified. Again, he was amazingly convincing. He said he would send me a copy of one of their magazines to reassure me.

What I know now: it costs next to nothing for them to print a mock-up magazine and send it to you, often including your “advert”. 

When I received the magazine, I assumed it was genuine and I paid him again.

A week later, yet another publishing company called me, claiming that I had agreed to take out an advert in “Crime Prevention” magazine. I protested, but the caller then became so abusive and threatening (court action, bailiffs etc) that I panicked and used my own personal credit card to pay him.

Now, I knew I’d been had. I contacted the credit card company straight away and stopped answering numbers I didn’t recognise on my phone. They tried to call me six times in one morning, then several times a day, and then eventually it stopped.

I recently got the money back from my credit card company, but the rest is lost.

These people are the lowest of the low. I have reported the whole scam (as I believe all three were linked) to Action Fraud, who are investigating my case. Recently, three men were jailed for an almost identical scam.

And lastly:

  • Use the internet and local business groups for support

Being self-employed can be very lonely. I don’t meet other bookkeepers very often. However, my awarding body, the Institute of Certified Bookkeepers, runs an excellent website with forums and numbers you can ring for advice and support. The forums in particular have proved themselves invaluable when I’ve encountered problems I’m not sure how to solve.

The ICB also have a network of local branches. It’s a struggle for me to get to branch meetings because I’m unable to drive due to my long term health condition, but the branch chair and vice-chair have worked incredibly hard to accommodate me, and I will be going to my first branch meeting this month. I’m really looking forward to getting advice and support from fellow ICB members and also to listening to the excellent speakers they have lined up.

So, there is what I have learned so far. I’m sure the learning will continue as I become more established. I hope what I’ve written here might help other self-employed people not to fall into the advertising trap I got caught in, and reassure them that we’re all experiencing the same challenges.

Posted in Advertising, My Life, Self-employment, Uncategorized | Tagged , , , , , , , , , , , , , , , | Leave a comment

Why women must vote

Last night, I finally watched the last part of an excellent BBC2 documentary series that was on a few months ago called Suffragettes Forever! The Story of Women and Power. In case you hadn’t noticed, we’re about to have a General Election in the UK, so the story of women’s struggle to gain their electoral rights and loosen the male establishment’s grip on power was even more inspiring.

Many women are bored of hearing the same old line: women must vote because suffragettes died for their right to do so. But it was so much more than that. Women were beaten with whips, raped, force fed and trampled to death. Men were so afraid and angry about the suffrage movement and women gaining power that they were prepared to go against all modern standards of respect for the “fairer sex” at the time and would physically attack with abandon. If that doesn’t make you angry enough to get out there and exercise the right which they fought so hard for, then I don’t know what will.

Or perhaps I do. The thing that struck me most about the last part of Suffragettes Forever! was that it looked at how much power women have now, in Britain today, and how that power still brings out the worst in some men. In 2013, campaigner Caroline Criado-Perez and the MP Stella Creasy campaigned for the Bank of England to put at least one woman on the back of the newly-designed bank notes, which were planned to only feature men. Their campaign was successful, and Jane Austen will grace the back of our £5 notes in the near future. However, it was what happened afterwards that was shocking and shows how men still fear women with power. Both women received hundreds of rape and death threats from anonymous trolls on Twitter. Stella Creasy, when interviewed for the documentary, detailed some of the sexism and misogyny she’s had to endure as a female MP too.

And not that much has changed as far as the balance of power goes, either. We may have had a female Prime Minister from 1979 to 1990, but she felt she had to surround herself with men in order to be taken seriously. In her 11 years in office, only one other woman held a position in her cabinet. There were only five women in David Cameron’s most recent cabinet. If you look at photos of British cabinets since 1990, there are so few female faces as to be, frankly, insulting. Even Tony Blair’s first cabinet, which featured more female politicians than ever before, was immediately ridiculed in the press, with these well-respected, intelligent women reduced to being called “Blair’s babes”. Another huge insult.

So this is my call to British women during this important last week of the election campaign. You must vote. Vote for your sisters who fought and died to gain your right to vote. Vote for women all over the world who still don’t have the right to vote. Vote because the balance of power is not shifting fast enough. Vote because men still threaten powerful women. It doesn’t matter who you vote for, but please, for women everywhere, vote.

Posted in Activism, Feminism, General Election 2015, Suffrage | Tagged , , , , , , , , , , , , , , , , , , , , , | Leave a comment

Don’t knock social media campaigns

Bring back our girlsYesterday, it was brought to the world’s attention that it was exactly one year since more than 200 schoolgirls were kidnapped from their school in Chibok, Nigeria by the Islamic State affiliate Boko Haram.

This outrage took the social media world by storm a year ago, with millions of people posting and using the hashtag #bringbackourgirls. Even Michelle Obama was photographed holding a sign reading “Bring Back Our Girls”. I myself joined in with the response on social media, changing my profile picture on Facebook to the one above, and posting about how shocking this kidnapping was.

The worldwide condemnation of this brutal act continued for a few weeks, with articles following the Nigerian army and police force as they tried to locate the girls; but as the weeks wore on with no sightings, the social media world moved on, and something else began “trending”.

Since then, I have to admit with a hanging head that I’ve not thought much about those girls or what has happened to them. The world is a scary and horrifying place, and the crimes committed by IS, Boko Haram, Al Qaeda and the like have outraged me every time, drawing my attention away from the quiet desperation of Chibok and their missing daughters.

There has been much condemnation of social media because it has largely forgotten the Chibok girls. I too am a little bit ashamed of all of us for not thinking about them. However, the campaign did raise awareness and push the Nigerian government to do something, and some of the girls have escaped or been found. Sadly, it is estimated that about 219 of them are still missing, and goodness only knows what horrors they are being subjected to on a daily basis.

But this is not the fault of social media. I have been involved with many campaigns and signed many petitions, written many emails to MPs, planning authorities, world governments and corporations, all as a result of being on social media. I campaign via some wonderful campaign organisations, such as 38 Degrees, All Out, SumOfUs and Avaaz. Only yesterday, in response to international pressure largely coming from All Out supporters, five Chinese lesbian women were released from jail after having been detained for organising a peaceful demonstration fighting for equality. Each time this happens, I feel that I am making a difference in the world despite my physical and geographical limitations.

So don’t knock social media. It may sometimes be frivolous, fun and insincere, but it can also be a powerful force for change in the world. Get on there and start campaigning!

Posted in Activism, Feminism, Islamic State, Media, Social media | Tagged , , , , , , , , , , , , , , , | Leave a comment

Protest votes – be careful what you wish for

Last week, we were having dinner with three like-minded friends. We usually agree on most things, in particular where politics is concerned. Naturally, the conversation turned to the upcoming UK general election. One of our friends asked the general question of how we were thinking of voting on 7th May. This led to a general discussion about the dilemma many voters with a conscience face next month – do we vote with our hearts or do we vote tactically to keep the Conservatives out of government?

One friend (we’ll call him Matthew) then stunned us all by saying:

“I really want to shake up Westminster, it’s been a Tory/Labour stronghold for far too long; so I think I’m going to vote for UKIP.”

Matthew is exactly the sort of voter who is going to blindly lead us all into the hell that would be a large number of extreme right-wing MPs in Westminster. And I am not exaggerating here. Make no mistake, despite any appearances to the contrary, UKIP are an extreme right-wing party. Farage and his cronies may be very good at pulling the wool over voters’ eyes and coming up with what seem like refreshing sound-bites, but deep down beneath the veneer, they are as racist, homophobic and jingoistic as more open right-wing parties like the British National Party or the English Defence League.

Take Nigel Farage’s claims about “immigrants” with HIV and AIDS being a drain on the NHS, during last week’s ITV Leaders Debate. He claimed that 7,000 people per year were being diagnosed with HIV/AIDS who are not British nationals, costing the NHS £25,000 per patient per year for anti-retroviral drugs.

These claims were then systematically debunked by all the main public health bodies, reported here in the Guardian, amongst many other respected newspapers and online news outlets. Many of the other “statistics” he bandied about in the election campaign were also revealed as lies and deception the following day.

The problem is that Nigel Farage and his UKIP colleagues are very good orators and can spout spurious claims with alarming confidence, which appears as honesty and candour. They claim to  be “saying what the main politicians won’t tell you” and “speaking for the people of this country”. Because they are all well-spoken, privately educated, rich white men (in the main) it’s very easy to believe them. We’ve been conditioned to believe people like them since birth.

Media outlets, in particular the BBC, would have you believe that UKIP are making real headway in Westminster. After all, they won two bi-elections in 2014, didn’t they? But both of their candidates in these bi-elections had stepped down as Conservative MPs in their constituencies after defecting to UKIP. The resulting bi-elections re-elected them as MPs in these constituencies. The voters were obviously wanting to keep the status quo. These were not bi-elections won from Labour or even the Conservatives. They were won by default.

This idea that UKIP are changing the Westminster landscape is as spurious as their statistics; but it’s reeling voters like Matthew in. He truly believes that if he votes UKIP then things will change in Westminster.

The likelihood is that they won’t, but his vote could possibly mean that Westminster swings to the extreme right, which would be disastrous for all of us. Just look at what happened in Germany in the 1930s and where that led.

If you want to make a protest or a stand against the way Westminster is currently run, then vote Liberal Democrat, or Green, or for the Monster Raving Loony Party. Or vote for the independent candidate in your constituency, if you have one. Better still, spoil your vote, write “none of the above” and stick it in the ballot box.

A vote for UKIP is a vote for intolerance, xenophobia and hypocrisy. None of these things should get a foothold in Westminster.

Posted in Activism, General Election 2015, Politics | Tagged , , , , , , , , , , , , , , , , , , , , , , , | Leave a comment

“Colour blindness” and equalities legislation

Last week, I watched this programme on Channel 4 about race. It was a fascinating breaking down of a lot of the myths we have been fed about race and racial stereotyping and it certainly made me think. However, the section which stood out for me was when Trevor Phillips interviewed UKIP leader, Nigel Farage.

You probably saw something about this interview, as it made it onto social media and into the national news programmes before it was broadcast. Mr Farage was asked whether he would scrap all equalities legislation, with particular reference to the sections on race prejudice. He said that he would, because “as a party, we are colour blind”. I’ve also heard him say similar things about other equality-legislation-protected minorities like women and the LGBT community.

But these statements just don’t stand up to scrutiny. As a person, I may believe that people of any race, women and LGBT people deserve the same rights and protections as anyone else in society. However, the person standing next to me may well hold exactly the opposite opinion. It’s all very well for Nigel Farage to say that, if UKIP get into power in May, they will be able to scrap equalities legislation and everyone will live happily ever after in a miraculously unprejudiced and equal British society. This is a pipe dream.

Equalities legislation exists because of the sizeable minority of people in this country and all over the world who persecute people of colour, LGBT people, women etc, because of who they are.

Just a few days ago, a woman was beaten to death by a male mob on the streets of Kabul, in Afghanistan. It’s not clear why, and the Afghan authorities have so far falsely claimed that she was mentally unstable and had been seen burning a copy of the Qur’an. It seems likely that all she did was stand up to a man in the crowd. Afghanistan has a sizeable women’s rights movement which is working hard to end this type of prejudice and violence. The Afghan government has pledged to support this cause, and the president has publicly condemned this killing. This is only the start. Ending this type of violence and prejudice is about education and social acceptability.

In the 1950s, advertisements like the one below regularly appeared in newspapers and magazines all over the Western world (this one is American):

1952 advertisement for Chase and Sanborn coffee

We look at these advertisements today and we laugh with horror that it was ever socially acceptable to hit your wife if she displeased you in some way.

But the reason it is no longer acceptable is because many women (and men) fought for the law and social attitudes to change. As it became more acceptable for women to be seen as strong human beings in their own right, this sort of advertising and the behaviour it encourages became socially and legally unacceptable.

The same can be said of any minority group currently protected by equalities legislation.

And it only takes a change of government to change social attitudes. Look at the rise of Nazism in Germany in the 1930s. I’m sure that most of the Nazi German forces, if asked before they took up arms in Hitler’s cause, could never have imagined the pain, murder and destruction they would inflict on the Jewish people, gay people, people with mental illness and the disabled.

We need equalities legislation because not everyone is accepting of everyone else. Some people even have so much hate and disdain for a particular minority that they are prepared to kill because of it. The law must be there to hold these people to account.

Posted in Activism, Advertising, Crime, Education, Feminism, Holocaust, LGBT, Media, Politics | Tagged , , , , , , , , , , , , , | 1 Comment