How do we change attitudes

Disabled people are not another species

I started this Blog with no clear idea of exactly what I was going to write about. The idea was that I didn’t want to be defined by my disability. The thing is, I have since realised that it is so much a part of my life – it IS my life – that I write everything from the perspective of a disabled person.

When I read the newspaper to gain ideas and information for my writing I am instantly drawn to disability issues. Inevitable? Probably.

Photo by Matthias Diesel on Unsplash

Two news stories caught my eye today. Although they are different, they both relate to how disabled people are commonly regarded.

The first was about a benefits claimant. She was being assessed for her Personal Independence Payment (a monthly benefit awarded to help the disabled with daily living) and she was turned down because it was thought that her mobility was not as compromised as she claimed. She appealed. During the appeal, It emerged that she had been referred to as a ‘lying bitch’ by a Department of Work and Pensions (DWP) official in his report. She sued the DWP and won her case. To read more go to https://www.theguardian.com/society/

The second story comes from a disability rights group, Disability Rights UK (DRUK) In their Newsletter they report that they were part of a high level hustings organised by a consortium of disabled charities during the recent General Election campaign and not one single MP from any party attended. Read this at https://www.disabilityrightsuk.org/news/

Both of these articles highlight in different ways attitudes towards disability in general and disabled people in particular. There are many types of disability, some obvious, some not so and some which are hidden completely. This latter category includes those with mental health issues which can be as disabling as physical disability.

It is well known amongst the disabled community in the UK, that assessment for benefits, particularly Personal Independence Payment (PIP) can be terrifying, stressful and gruelling. There are conditions like MS and other neurological diseases which can manifest themselves in ‘good’ days where mobility may be quite manageable and a claimant can be viewed as being not as disabled as they are really are.

This will often lead to an award of PIP at a lower level than what is actually required, leaving people already struggling even more disadvantaged. There is a right of appeal as in the case of the Claimant above. Many people are put off appealing their claim because it involves further stress. A solicitor from the firm involved in the court case commented:

“Although the facts of the case are unusual, it does highlight a general issue that disabled people are experiencing a hostile environment in the benefits system.”

Robyn Taylor

Unfortunately, this doesn’t apply to just the benefits system. Attitudes are not always hostile, but just as bad – patronising.

We are part of the human species

What disabled people dislike most is being patronised. The view from a wheelchair is always waist height! This immediately makes people think you need:

  1. Ignoring
  2. Pitying
  3. Patting on the head
  4. To be spoken to as if you were a child
  5. Sympathetic looks

………..the list goes on.

Wheelchair users are full of anecdotes about being treated this way, some very funny, others extremely irritating. Somebody once suggested that I ‘learn Spanish, it’ll be a challenge’ as if life wasn’t challenging enough! Or ‘I could really do with one of those’ referring to the wheelchair. These things are thoughtless and crass. Sometimes I say something back, mostly I don’t

It’s understandable that people who have had no direct or regular contact with disability find it difficult to comprehend. If you can’t think of something to say that doesn’t sound bad, probably best to say nothing at all.

There is a serious conclusion to be drawn here though, and it goes back to the two news stories above. It’s clear that professional services like the DWP need to provide proper training to their staff who are going to be dealing with disability issues such as PIP and other things.

Being disabled does not turn you into a sub-human species, or mean that you only have half a brain cell. Different disabilities need to be treated in different ways, according to their various levels and limitations.

It would be good if attitudes could change so that life when you are disabled gets easier not harder. The world needs to look beyond the disability and see the person who is there.

Pnhoto by Dan Meyers on Unsplash

Living the very best life you can

What we can learn from the Stoics
Photo: Barns Images on Unsplash

I read an article two or three days ago about how Stoicism can help you be the person you want to be. I took quite a lot from it and considered how I could apply it to my own life

Under the heading ‘View from above’ the writer suggests re-evaluating ones life; perhaps in the evening, you review your day and how you feel about things that may have taken place. He writes:

‘How many times have you had a conversation or an interaction with someone and thought afterward “oh man, I should have said that”, or “I wish I hadn’t done that”?‘

(Toby Carr on Medium.com)

That has happened to me so many times. Indeed I used to spend hours after a conversation reviewing it in my mind and feeling cringingly embarrassed at the way I had conducted myself in the interaction.

Weird?! Not so, but the result of a complete lack of self confidence and extreme self-consciousness.

What the Stoics can teach us

I began reading the Letters of Seneca, another great Stoic. In three brief letters on the shortness of life he said:

We are not given a short life but we make it short, and we are not ill-supplied but wasteful of it.”

(Seneca: The Shortness of Life)

I realised over time, reading Marcus Aurelius as well, that life was too short to worry about things I had said and was not able to take back, things I had worried about unnecessarily, situations I had handled badly. All the things that makes us human and fallible.

But I was soon to learn about the shortness of life in a dramatic fashion, which forced me to re-evaluate every single aspect of my life. My active life was cut short through illness and disability at the age of 48.

Although it has taken me 15 years to learn to live with my rapidly progressing paralysis, eventually I found a way to practice the teachings of the Stoics, just as I had always tried to do, to get over the self consciousness issues of my younger self, and all the things I wished had had different or better outcomes. Believe me, there is nothing that makes you more self conscious than suddenly having to live your life in a wheelchair!!

Toby writes:

‘Exercise helps with mental clarity as well as general physical health’ and ‘Physical exercise should be a staple in everyone’s life’.

(Toby Carr)

Obviously, for me, physical exercise was out of the question. Gone was the opportunity to take long walks to clear my head and do my thinking. Even now it’s difficult for me to find a private space to think.

I’ve always loved classical music, so with a pair of headphones I am able to get some thinking space listening to music that inspires me. That’s the nearest thing to a walk!

In addition, I can listen to the Letters and the Meditations of the Stoics on audiobooks.

So, despite my limitations, I still try to live and be the best I can be. I always try to think of something that makes me smile before I go to sleep. I don’t dwell on negative thoughts, or things I have said during the day or things that worry me, but to be in a positive frame of mind as I drift off.

None of it is easy – every slight movement or nerve pain reminds me I have MS and I will always have it. But, as someone close to me is fond of saying ‘life was never meant to be easy’. I’m sure everyone would agree with that.

Be kind to yourself, live your best life and, of course be kind to everyone else.

Photo: Sourced from Google Images

First published 10th December on https://medium.com

Ferrante’s Storytelling in a Global Age — Public Books

Today Europa Editions publishes Elena Ferrante’s Key Words, by Italy’s foremost Ferrante scholar, Tiziana de Rogatis. Key Words takes the acclaimed Neapolitan Quartet beyond its Italian origins and connects it to the trends and networks of global literature. (Public Books.org).

Ferrante’s Storytelling in a Global Age — Public Books

For anybody who has read Ferrante anything written about her is interesting. Follow the link above to read more.

She is an enigma, as no one knows her real identity. It’s hard to believe, in the 21st Century, that anyone can keep themselves and their whereabouts secret. You would think that someone, somewhere would have found her and splashed her over social media. As far as I know, nobody has.

Photo courtesy of Google Images

If you haven’t read any of her books, I urge you to start with this one, pictured here. I couldn’t stop once I started, the writing is amazing. This first one started out as the first of a trilogy, but, in fact Ferrante added a fourth. They are known as the Neopolitan Novels.

They chronicle the lives of two friends, starting in childhood and ending in old age. The style is fascinating, a little quirky. The story is so gripping I read all four one after the other, an unusual thing for me but it had to be done.

The two little girls in the first book live in a part of Naples which is poor, but in which people strive to make a living that they hope will lift them out of poverty and elevate them to a higher place in the order of things.

One child is clever, studious and sees education as her way out of her situation. Her counterpart is completely opposite, she runs wild most of the time, and sees marriage to a rich gangster as her way out.

These two characters are diametrically opposed but somehow they maintain an uneasy friendship throughout their lives, sometimes not seeing each other for years.

I haven’t given too much detail here, it would probably take all day! These novels are so rich in content, depth and just good storytelling. I’m going to leave you to judge for yourself.

I would recommend these books to anyone who loves reading life stories, or family sagas, or indeed just anyone who loves books. Happy Reading!

Photo Goodreads on Google Images

Hello again, hello

That’s a line from one of my favourite Neil Diamond songs. Just popped into my head as I was writing hello.

Photo by Jealous Weekends on Unsplash

So, welcome to my newly designed blog. I hope it’s crisp and clean and easy to navigate. If you have any thoughts please leave a comment. It may yet need tweaking.

It’s actually a day late going live. After a lovely family weekend, my plan was to complete it yesterday. Well best laid plans…….

I’d just set everything up, computer in front of me, stylus poised when wham! We had a power cut. We waited…waited…. hoping it would come back on. Then an engineer appeared on the doorstep, saying power was unlikely to be restored until 10.30 pm!

We were aghast. I have a medical bed which is electric, luckily the back rest had been left by my wonderful carers in a reasonable position so I was ok.

The two worst things? No heating and no internet! It had to be the most boring day ever.

It made me realise how dependent we are on our gadgets, our tech and all the appliances that use electricity. We actually had to chat to each other! We were trying to imagine what it would have been like to have lived in the time when electricity didn’t exist.

We lit candles and lit our wood stove, and we were quite cosy. No tv to watch, no underlying hum of electricity, very peaceful, and best of all, no telephone!

The worst of it was being cold. No wonder people went to bed so early. Just goes to show……..!

Photo by Zoran Kokanovic on Unsplash

Notes on an election campaign

Source: Unsplash.com

 

It has to be said: this one’s a bit of a joke

 
Boris is getting himself in a twist as to whether he’s building 40 new hospitals or 6, or whether it’s actually just refurbishment, whether we’re going to have 50,000 nurses or actually 19,000. He really doesn’t have anything to say other than ‘let’s get Brexit done’!  ‘Unleash Britain’s potential’!  He promises a high level of investment in the NHS, in Education, in apprenticeship etc, all the usual stuff.
 
 
 
Mr Corbyn ( funny how we call Boris by his Christian name but with Jeremy we are more polite) promises unprecedented levels of spending, an old socialist policy, although possibly we’ve never seen it on this scale, billions being thrown around like confetti (yes that’s a cliche but it fits) to fix just about every problem we face.  When he runs out he’ll just borrow some more! On Brexit he declares himself neutral – an ‘honest broker’ to bring the country back together. It’s more likely that he is waiting to see how the land lies before he commits himself.
 
 
The Liberal Democrat’s promise to stop Brexit and revoke Article 50 is anti democratic. It ignores the wishes of every leave voter.  It’s totally unrealistic to imagine that they are going to vote for this. The thing that is most striking about their campaign though, is the constant repetition by Ms Swinson that she’s not putting Boris back in Downing Street, but she’s not going to put Mr Corbyn there either.  She does not say who is going to be there. I think she really thinks that she could be going there instead!
 
 
In the Question Time session last week, the only party leader to acquit herself reasonably well was SNP leader Nicola Sturgeon.  There were a lot of Scots in the audience who were able to get answers to their questions. All well and good. For the rest of us the important thing is her insistence on another Independence referendum. Again this is anti democratic as they’ve already had one and voted to stay in the Union.  Both Johnson and Corbyn would deny her that, although Corbyn has said not in his first two years then he sort of fluffed a bit and said not in his first Parliament. About the only thing they agree on! Their  relevance in the campaign is what they if they’re holding the balance of power.  Ms Sturgeon says she’ll work with anyone except Boris!
 
 
Except, of course, none of this is a joke.  It’s uncertain, muddled and therefore confusing.  It’s frightening or exciting depending on where you stand.  None of us can see how this is all going to pan out. It’ll probably go right to the wire before we know.
 
 
 
Photo by Pixabay on Pexels.com

Moving Forwards

Photo by Toa Heftiba on Unsplash
How to face your fears and move on

Wednesday of this week for me, was momentous. You will probably think that what I am going to say next is not much to write home about!

I went out in my new power chair. There it is. I can hear the murmurs ‘and?’ ‘so?’ ‘and that was momentous because….’.

Having a power chair after years of depending on other people to be pushed around is a wondrous thing. Having no choice as to where you can go, concern about whether the person pushing is able to manage awkward spaces, being parked while they go down a supermarket aisle or go off to talk to someone, is one of the most frustrating things in a disabled person’s life. It has been my life for the past nine years.

About six months ago (yes six months) I finally got a made to measure power chair. At first I wasn’t allowed to go outside in it. This had to wait for an assessment to see if I was ready.

Eventually, I got the date for the assessment. I was very nervous, I panicked when they put me in a chair that had 5 speeds. My chair only had 3 and I usually pottered around the house at 1! Even more scary was that I had to do everything at speed 5! I won’t bore you with the details except to say it was terrifying! There seemed to be more than the usual amount of old ladies with shopping trolleys and mums with buggies and toddlers – all of which I obviously had to avoid!

I passed. Don’t ask me how I haven’t a clue. Somebody came to my house the next day and altered my speeds to five.

Wednesday was the first big test. My daughter offered to take me to the local golf club for brunch. I was going to a cafe where there was potential to plough into tables and chairs, and basically wreck the place. It took me back to the time when I had a mobility scooter and I knocked over a whole rack of ladies’ underwear in Marks and Spencer’s There were bras and knickers all over the place! Mortifying!

So, I was apprehensive of course, but I knew that if I didn’t do it now I would never do it.

It was fantastic. It will be memorable to me in this journey I’m on. It has given me so much more confidence to go out more. It just goes to show that you must face your fears to move onwards and upwards!

Photo by Sharon McCutcheon on Unsplash