This is Why I Don’t Go Out….By Jo.

Today I want to write about the awful bullies I encountered while out one Friday.

I went out as normal and I took myself to a local hotel in my town called, The Royal Albion Hotel in Broadstairs.  I picked a table and ordered my cuppa and croissant as usual.  While I was sat there I came over extremely hot.  This was partly because they have the heating on super high, and because I  still have a temperature from my cold.  At the time there was nobody else near me so I opened a window.  It wasn’t cold at all, but it was nice to have a small bit of fresh air.  It was open not even an inch.

A group of men came in.  I always see them in there and they sat in a table well away from me.  All was fine and I sat there with the window open and drank my cuppa.  A good thirty minutes past and suddenly I heard them whispering away and turning to look at me. At first, I just ignored it but then the ‘whispers’ got louder and it was obvious it was so I could hear them. They said:

‘Oh God, that disabled girl has the windows open, so someplace has to tell her to shut it. I don’t care if she’s disabled, she needs to be told.’

 

Jeez,  I wonder why I don’t go out much and I get anxious and worried people are whispering about me?!!

 

They then continued to whisper and giggle – poor excuses for men, I say.

 

As I left, I slammed the window shut, and they all turned to stare.  I had to pass their table as I left, so when I did, I called them nasty bullies and small minded.

I hate bullies. What can you possibly gain from making someone else feel worthless??

Its really made me think if I’ll ever go in there alone as I know these ‘men’ are regulars and I don’t want to be left hurt and upset again. I did mention it to management but I doubt anything will be done.

Everyone is dealing with something, so maybe try to be kinder to everyone you meet, as you don’t know whats going on with them or how hard its been to simply make themselves get up that morning and go outside.  Don’t judge what you don’t know!!

 

Have you ever encountered upsetting or bullying behavior ?  How did it make you feel as someone with a disability?  Let us know in the comments below, and many thanks to Jo for her contribution to the site today.

 

 

 

 

 

 

 

 

 

 

 

 

 

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Author of The Single Feather R.F. Hunt talks disability, stigma and ‘the cuts’.

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Poetry from Annie Watkinson (part one)

The Silent Scream
If these utterances could be clothed
And made presentable
Then is it all possible
I may be understood?

But silence has a habit
Of closing in around
The screams,
Leaving it unheard.

Leaving me without a voice,
Without a choice,
Darkness falls.
But it’s not still,
Only ill
Can come of this,
Thick, cloying, velvet blackness
Name it!
Shame it!

But you can’t, can you?

It’s pitch black inside my head.
And there’s no torch or candles
Or a light switch anywhere.

My Left Breast
I want it back, you know,
This left mammary gland of mine.
We’ve been through a lot together,
And I thought it was just fine.
Sleeplessness nights with hungry babies,
My left breast shared the load
Of supplying sustenance,
To my hungry brood.

It’s been pushed and shoved through mammograms,
Like fingers trapped in a drawer,
And fitted into underwear,
I can’t imagine I ever wore!
Such saucy, teeny=weeny scraps,
With lace and hooks,
And invisible straps.
I really was quite naughty then,
But if I had my time again,
I would treat my breast with such respect,
For I never guessed how it would affect me,
Stolen, while I slept.
Anaesthetic, the theft’s accomplice.
I want it back, can’t you hear my pain?

If I can’t have it back.
Take away the other half,
If it wasn’t so tragic
I guess I would laugh,
At the thought of a carving knife hacking away,
At my one lonely bosom.
But I’m not mad, sad and dangerous,
So don’t dare say I won’t do it.
For unless you return
My lost property to me,
My right one I’ll spurn.

Dear surgeon,
Please hear me,
I’m desperate, you see,
To have my left bosom returned, whole
To me.

Too Many Words
How is it I can hardly breathe
When the room is full of air?
Where can I go?How can I leave?
When I feel so low.
Nowhere.

Nowhere is good
With its vacuum of words
And my thoughts unheard
Have free rein
And the pain
Can be released.

Into the void
Stillness, nothing, space,
Scream, slice.
But it seems that
Noise returns,
With its size 12 boots.
And leaves their tread
Upon my thoughts
Inside my head.

I try to quiten the roaring hell,
But the voices scream, ‘Don’t tell! Don’t tell!

Words cannoy be endured,
Must be ceased.

Too Busy to Die
I have books unwritten,
In the recess of my head,
But how will they be published,
Ifc I am dead?

I have precious words to speak,
To sooth the poor and needy.
But how will they be comforted
If my demise is rather speedy?

I have many jobs to do,
Languages to learn,
But how am I to speak them,
If I end up in an urn?

I have to see my children grow,
And see their children too,
So how can I die early,
When I’ve got so much to do?

I have lots of loving,
Lots of kisses on my tongue,
Lots of music, lots of singing
I need to live if they’re to be sung.

I need to learn piano,
For notes linger on my fingers,
But how can I play melodies,
If death refuses to linger?

So now I need to find a plan,
For me to live forever,
That seems to be the only way,
For us to stay together.

So, sod off cancer,
Leave my cells and body well alone.
Fo I am in my element,
Here, in my loving home.

I need to be with family,
I play a starring role,
I don’t think much of dying,
I’ll stay here, thanks.
That’s all.

Copyright remains with Annie Watkinson.
Read more powerful poems and posts here: http://bipolarbear724.blogspot.co.uk

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A Day in my Life – Cauda Equina Syndrome by Stuart

Hi folks, this is a slightly longer article than normal, but worth reading, as it’s a full and frank account of life, living with a newly acquired serious disability. Do please read and comment, Ruth.

Up to 2012 I was a fit healthy man in his early 40’s. I had back surgery because of a collapsed disc. The disc collapsed on my spinal cord and caused some serious damage. I was left with a condition called Cauda Equina Syndrome. The spinal cord below my waist had been damaged and resulted in numerous problem. My feet were numb, my legs, my backside, my bladder and bowels. (My sexual function has also been affected, but I’d rather not talk about that.)

With a struggle I could lift my leg a little. This was deemed a success. My CES was incomplete. I was told my prognosis was uncertain, I clinged to that hope.
For the first month, I had a catheter permanently fitted to my body. I was warned that my bladder may be paralysed for life, After the first month, I was sent as an outpatient where the catheter was removed and given instruction on self catheterisation…I’m expected to insert that inside my…whenever I need to empty my bladder? The thought of it brings chills even now. That thing is about 2 foot long and only starts emptying after inserting 1.5 foot of the thing inside my body. It was horrifying.

I had constipation you wouldn’t believe. The nerves that controlled my bowels just didn’t work, and trying to solve it was an ordeal. The pain and discomfort was something else. I told the doctors but just got laxatives and advice. Somehow I struggled on with minor bowel movements taking all my strength, energy and time. I would sit in the toilet for hours on end.

Two months after my operation, I caught the flu, or so I thought. I was the sickest I’d ever been. Vomiting, diarrhea, (which at least gave ne some relief) fever and chills…I thought I was dying…and I was. Turned out it was severe sepsis, I was rushed back into hospital, put on a drip. Fortunately I recovered from that with no long-term effects,

Returning home after my sepsis was no victory ride. I was going back home to my miserable existence. I could barely walk, my feet were constantly numb or with pins and needles, My legs felt cold and my behind was numb.

I slept on top of towels because I was liable to wet or dirty myself during the night, I kept a dish towel permanently down my pants. Day and night. I showered a lot and watched a lot of TV. My only carers were my elderly mother and my sisters who lived nearby. I had one visit from one health visitor.

I was on a lot of painkillers and decided to wean myself off them rather than be drugged up like a zombie. I thought if I’m housebound I might as well go through the cold turkey of withdrawal. I set a target to be off all my drugs by the end of 2012…and I managed it with weeks to spare…the pain wasn’t too bad.

I suffered from a lot of infections brought on by catheter insertions and spent many a day at doctors or on NHS 24 getting advice. No sooner had I finished a course of antibiotics than I would be on another. Eventually I just got a repeat prescription for antibiotics. They made me feel quite ill, but I had no choice. I was on them for more than 6 months.

Christmas 2012 wasn’t much fun.

January 2013 I went to the toilet and had an urge to urinate…and out it flowed, gallons and gallons (or so it felt). The joy of it all. I thought it was over…it wasn’t by a long while.

Occasionally my bladder would work, but mostly I still needed catheters. I started monitoring my bladder quantities and slowly but surely things started to improve. It did take another year before I finally throw away the catheters. No catheters, means no infections, means no antibiotics. A success of sorts. My bladder could turn on and off but I couldn’t control the flow, Gravity did the work, it’s much the same now.

My balance and mobility improved to the stage where I could stumble around a supermarket escorted by a family member. The idea of using a supermarket electric wheelchair/trolley didn’t enter my mind. The thought of it, they are for disabled people…not for me.
Believe it or not I actually managed to return to work in April 2013. I worked for 8 hours a week. It got me out of the house. So I worked two afternoons a week. When I wasn’t working, I was in bed. I think I went back to work way too soon…about a year too soon. I can’t complain about the support I got from work, they amended my job, provided me with a super chair and rearranged my office. They were great.

Money was beginning to become an issue and so I applied for DLA..or PIP as it’s now called. I applied…and waited.

My bowel problems had improved slightly. I was constantly constipated and uncomfortable. I can never quite empty myself, I always feel like I need to go (but cannot go). And I can get a sudden urge to go quickly. After a lot of trial and error, I have found a way to manage my bowel issues, If I don’t eat I am fine, so I wait until 5pm before eating…from 5pm to 9pm I eat at home. So I wake hungry, go to work hungry, then come home and eat. It’s not ideal.

Then summer came and I found I could move around a bit easier…with a limp and swagger I could walk all the way round a supermarket pushing a trolley. I started getting up earlier and spending less time in bed.

I dug out my old mountain bike and climbed on…I discovered I could still cycle. I could cycle better than I could walk, in fact I felt almost normal. I felt freedom. I have kept up my cycling, and now cycle to work when it’s dry.

Around 10 months after applying for DLA/PIP I was given a date. I went for the ATOS test. The assessor was a nice enough woman and I answered the questions honestly. Yes, I can dress myself. Yes, I work (16 hours a week by this time). I can walk around a supermarket slowly clinging onto a trolley. No, I’m not on any medication. Not surprisingly my DLA/PIP was turned down. Seemed I wasn’t disabled enough.

Another effect of my ‘clean bill of health’ was that I couldn’t get the a blue parking badge. People have suggested talking to my doctor but my doctor said there was nothing they could do…the only way I could get a blue badge would be if I was getting the moderate PIP for mobility. I got nothing.

So, it’s now 3 years after my accident.
I work 16 hours a week. It’s the only money I get.
I walk with a limp and swagger. Could maybe manage a mile.
My feet, legs and backside are still numb and cold…but less so.
I still get pain in my back now and then but avoid painkillers.
I can’t stand on my tippy toes.
I CAN CYCLE!
My bladder kinda works. (No feeling, no force.)
My bowels still aren’t great. I always feel constipated. After eating I feel unstable for hours – where I cannot leave the house for fear of dirtying myself.
I have a routine of not eating until after work. So I always feel hungry when out.
I feel tired and delicate. This has affected my confidence.
I get out about 4 hours a day (work, shopping or social).
I still feel mostly housebound.
I never go out at night (after eating).
I care for my elderly mother (I do the cooking, cleaning, washing and shopping now, as my mum has grown quite infirm in the last year.)
Life isn’t great…
But it could be a whole lot worse.

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Oh God! A Reference…

Jules, a regular contributer to The Single Feather, had this lovely blog post and reference about the work he has done to help others, clink on the link to read the rest on his blog.

I was really…really thinking how I could blog this. But I shall. I got a reference, and it goes a little something like this.

The first person, I ever interacted with on Twitter about disability issues was Jules. Initially what we seemed to share was innate and extreme dislike of ATOS. After my first tweet. I waited for the sky to fall on my head (like Asterix) but it didn’t happen, and this started a conversation which has now lasted almost 4 years…

This is really worth reading, so do click on the link. It’s about friendship, supporting each other, being there when someone is in need.
http://virtualgherkin.blogspot.co.uk/2015/06/oh-god-reference-i-was-really.html

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People with Disabilities and Work: conflicting actions and messages by David ( @DisabilityJ )

Disabled people who are working or who are looking to get into work are feeling like they can’t win. Government and the media are sending out very confusing messages, employers are very reluctant to employ us as they are uncertain of their responsibilities and what extra costs and other implications might be for them.
For many years now there has been Access for Work Scheme, the scheme was there to provide the extra support that a disabled person might need to do a certain job. There are three basic elements to the scheme.
The first element would be the provision of adaptive equipment, equipment that would overcome the disability to do the same job. In my case as a visually impaired person this would include things such as CCTV software for reading mail, screen reading software enabling my computer to talk to me and magnification equipment.
The second element would be transport costs over and above normal public transport to help in doing your job. In my case this often meant taxis to take me to and from meetings as often I would be carrying a laptop, a screen projector and also a guide dog. In such circumstances travelling independently on public transport was simply not an option.
The third element of the scheme is to provide support at work, again in my case this would mean help with reading post, with the setting up of equipment and with tasks such as making introductions , planning a route etc.
Sadly we are now hearing that the government may be planning to scrap this scheme altogether. Indeed many of us have lost our support, So the message government is giving us is if you want to work then you must fund yourself, many people who earn as little as £12,000 pa may have a funding bill for support which almost matches their salary, for them work is no longer a viable option.
Closing the scheme would seem to suggest that the government no longer wants such disabled people to work. Remember, for many of us it’s not just about earning a wage but it has a whole lot more to do with our self esteem.
But just for the sake of this article lets just imagine that many of us would be happy to give up work because it would seem the government want us to. This would seem to imply the government want to provide us with support to carry on living at home independently,
Well, in the last few years there has been the attack on incapacity benefit, the closure of the independent Living Fund and the change over from Disability Living Allowance to PIP. So it would seem the government don’t want to provide us with the support to go to work nor do they want to support us staying at home.
The same Conservative Party back in the ’80s when they were trying to massage unemployment figures,encouraged thousands to retire on the grounds of ill health and were only too happy to top up their earnings with incapacity benefit, the same demography are now under attack from the same party. It seems to this blind man, that a certain party want to have their cake and eat it, they simply want disabled people to go away. How long before they start to find ways if making that happen?

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Disabled in 2015 – call for submissions

Do you have a disability or long term health condition and are under 65? Could you write an article about what it feels like to be disabled in 2015? 

Articles must be under 500 words as I’m looking to produce a once yearly magazine with articles. If you’ve submitted work before you can again or ask for an article already up on site to be your submission. If you don’t have the email address contact me via @SingleFeather1 or by leaving a message in the comment box below. Closing date will be 31st August.  

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