How I Started Campaigning - Twenty Five Years and Counting! (Part One)

It’s twenty-five years (almost to the day), since I ‘became’ a Disability Rights campaigner. Although, as you’ll see, there was no long-term plan or anything like that, just a little voice inside a little girl who had realised, I was different. That was then.

As a ten-year old, I wrote to the then Prime Minister John Major to voice my concerns about the cuts in the Special Educational Needs budget. I remember being panicked when I heard about such a plan. Having recently transferred from my beloved ‘special school’ to a mainstream primary school, I knew I was struggling to settle in. I was ‘different’ there.

How would some of the worst effected children cope if they were forced into a mainstream school situation, without the care and help they needed?

Society didn’t cater for us, and I knew it. Propelled by some unknown force within me, I sat and wrote my letter. The next day my Mum posted it.

At my previous school I was just one of many people with a disability. I had been bullied for a while, granted, because I frequently got my work done early and was able to spend my time writing stories, or doing the thing I really loved which was helping my friends. It broke my heart to leave, but I know my parents made the right choice for me.

Until quite recently I used to think that letter was the start of it, but looking back I now realise that my activism started even earlier than that – it started as young as eight. The day I decided to try to change the way disabled people and disability were perceived.

I made a small decision inside myself (at least I thought it was a small decision then) that maybe I could focus on the good things disabled people can do. Not physically, so much; not in terms of proving we can ALL climb mountains, become superhuman elite athletes. That’s what the media want you to believe, as a way of making you doubt those of us who can’t.

Back then, to the little girl who was me, it was just a case of wanting people to understand. Understand that I could do things, and that I wanted to do things. I wrote a little book for my school library about my disability: how it happened, and how it made me different to other children – how I was just Helen.

I’ve been writing letters about various different disability related issues, doing assemblies and lessons in school and fighting access issues ever since. Some have got me local press coverage and support, some have been left unanswered.

Dealing with hardship, discrimination, prejudice and unfairness as a disabled person isn’t new. Dealing with it on the scale dished out at the hands of our own government is. That’s the main thing that has changed since I started.

For me, that says it all. It has gone on happening, but I never dreamed back then that I would feel as ignored, victimised and hurt as I do now, and that’s why joining up with others is so important to me.

When I brought my campaigning online I knew something was going to happen. I knew something had to happen because there were a lot of frustrated, angry, isolated and frightened people out there (myself being one of them). People who were facing uncertain futures as a result of the Tory-led coalition government’s plans to cut benefits.

I wanted to know if I was alone in feeling victimised and persecuted, just because I was unfortunate enough to be born with a physical disability affecting my ability to walk or even stand unaided. I was sad, but also relieved to find that I was by no means alone. In those early status updates and blogs we discussed frustration, anger and pain at what had been thrown at us. I was assured that something was happening, so that we could, at the very least, have our say – I felt better.

On top of that was the negative press, and downright lies, people on benefits are still being subjected to. When you campaign alone, it can seem like you’re getting nowhere and I was tired of being ignored

Campaigning with others refreshed my sense of purpose I felt I was beginning to lose. Even though I have a wonderful marriage and my writing, there were so many pieces missing. The government attacks and negative press just heightened that feeling. I needed to find a way to carry on with my ‘little decision’. I’ve changed in some ways, even since I brought things online.

I prefer now to do things my tried and tested way, rather than get too involved in what groups, and meaningless campaigner hierarchies do. That is not me. It hasn’t been for the last twenty-five years, and it certainly isn’t now.

In terms of the conditions I have, my Cerebral Palsy will never go away. If anything, my mobility will deteriorate further as I age. ‘Wear and tear’ will take even more of a toll on my body. There is exhaustion, pain, and difficulty every day, which has been added to by worsening endometriosis.

I’ve battled with clinical depression since I was fourteen years old, which has only been compounded by the actions of this government. I never thought, twenty-five years later, that disabled people would be in a worse situation now than we were then.

I want more than anything to be a mother and live a normal life. I want to do the things others take for granted, but I don’t have those options and it’s not my fault.

As I said, we are being victimised, vilified and pushed out of society. We are having to fight for the basics that other people take for granted. Back then, at least we could be sure we were wanted in society, and the support and care we needed was there. Now we do not have that certainty.

Disabled people are suffering and dying at the hands of an compassion-less and brutal government. A government which has lied, cheated and turned the media and society against us.

If you’d told me that this would happen, I wouldn’t have believed you, but it has, and it is STILL happening!

If this government isn’t stopped, and if people don’t wake up to the pain and suffering being caused to some of the most vulnerable people in society, I dread to think what our situation will be like in twenty-five years time! I don’t even want to think what it’ll be like in two years, if this government wins the next election. It terrifies me!

Will there be anything left to fight for? I doubt it! Will disabled people like me be pushed back into institutions, so that we are ‘out of sight and out of mind?’

Will Disability Hate Crime rise even further than it has under this government already?

Will I still be waking up sweating after another nightmare about the Work Compatibility Assessment? I hope not! I don’t think I can stand it, and I know I’m not alone in that fact.

It frightens me that the future of sick and disabled people in this country is in the hands of heartless, out of touch politicians and an electorate that isn’t being told the truth. One of those ‘truths’ being the real level of benefit fraud, which is much, much lower than the government and the media would have you believe, or the devastating impact Welfare Reform has had on our lives.

If we are to carry on fighting for a cause I’ve always loved and believed in please, please help us. We can’t continue to fight for a better life for disabled people, or even go on living, if there is nothing left to fight for!

#helenswriting

My Proposal to Save Local Hydrotherapy Pool - Letter to Concerned Parties!

Dear ...,

As a long time disability rights campaigner, (and person with Cerebral Palsy), it seems to me that the ‘Connections’ day centre pool is essential for the people who use it.

As you may be already aware, hydrotherapy is very important for people with a wide range of disabilities, as well as those battling mental health issues.

It helps to build confidence (in a relaxed and informal way) for those with learning difficulties and (as I said), mental illness.

It allows people to socialise and make friends, as well as teaching them other valuable skills.

A service like this, in a local (and familiar) environment, can be something of a lifeline for those who find interaction difficult, and who (as a result), may spend a lot of time isolated.

It is equally essential for those with physical disabilities. I have benefited from hydrotherapy myself in the past, finding that the warm water loosened my muscles, making it much easier to move, and therefore build up strength in my legs. It became a vital part of my weekly physiotherapy sessions.

It allowed me (at least while I was in the water), to be virtually free of pain.  The weightless feeling, gave me a sense of freedom, which otherwise, I would not have had.

I found that I looked forward to my time in the pool, as it allowed me to relax and be with my friends, while at the same time, building strength and confidence.

I realise that (in these difficult economic times) we need to find a way of making the pool financially viable, in order to keep it open. We need to give something back to the parties involved in order that they maintain their involvement.

It seems to me that the key could be in forming some sort of partnership between Bath and North East Somerset Council, Sirona Health, Connections, Writhlington School, and of course the community as a whole.

Firstly, Writhlington School has the sports centre, which could benefit the pool by sharing clients between the two places. It is possible that they could charge a little extra for use of the pool, and in turn, pool users could use the gym and other facilities that the school offers.

It is also possible that the pool could be opened to the community as a whole, for things like swimming lessons, or even hired out for parties.

Any investment that BANES, Sirona, (possibly Writhlington School) and Connections put in would be paid back over time, and it would mean that any costs could be split between the concerned parties, which of course , would mean it would easier on stretched budgets!

It would also help reinforce a sense of community spirit, and forge valuable links between local businesses.

In terms of Public Relations, it would look for all parties involved to be sponsoring such a positive initiative.

I have given this a lot of thought and whilst I realise that there are other places where a pool is available, few of them would be able to offer the access to as many varied facilities that such a partnership could create.

It is even possible that package deals could be offered, which would help with promotion and maximise income for all concerned.

Also, people who needed rehabilitation as a result of accident, injury, or disability would have access to all facilities, which is excellent from a disability rights perspective, especially with such a strain on services, which have negatively on the lives of disabled and ill people.

We need people (and organisations) to keep putting disabled people first, and proving to us that we, (and the quality of our lives), are not becoming an afterthought.

Actually, when you think about it, the possibilities for the pool, and the place it has in the community, are almost endless. Issues such as ‘low occupancy’ would be solved as a result of a partnership, and we already know that local people would like to see the pool kept open.

I really do feel that it could benefit everyone.

Yours faithfully

Helen ....

Going Back (Poem 2014)

Where there were fields,
There are houses,
Crammed like sardines,
In a tin.

We would play,
Spend our days,
Running with the wind.

Those nights we watched for foxes,
Have been replaced by soulless boxes,
That people live within.

‪#‎helenswriting‬

Given (Poem - 2003)

Finding someone 
To love you, 
Isn't the easiest 
Task. 

After all 
It's not something, 
You can 
Ask 
It has to be 
Freely, 
Given. 

My Letter to the Mayor of Swindon - A Response to his Comments About Disabled People.

Dear Councillor Martin,

As a happily married disabled woman, I have to say that I was appalled by your recent comments regarding disabled people, and sex.

Although I was highly offended by your use of the word ‘Mongol’, I am more offended by the fact that you see disabled people as less than human beings, who in your eyes, (and they eyes of this government as a whole, actually), don’t have the right to live as normal a life as we can.

Quite frankly, I think people with beliefs such as yours, shouldn’t be allowed to have sex and breed, just in case such bigoted, discriminatory, heartless and outdated views are passed on.

They show an almost unbelievable lack of insight, compassion and understanding.

Just because a group of people are different to you, what gives you the right to judge them so harshly?!

Love and sex, are part of life. No one has the right to say that anyone should be deprived of it!

I hate to break this to you, but disabled people are people, too! I do realise this may come as a shock to you, but we have the same wants, needs, and rights as everyone else does!

I would also like to point out that anyone can be affected by disability, and their lives can change in a heartbeat.

No one chooses this life, and no one is exempt from the possibility that it could happen to them.

I sincerely hope that you do not ever find yourself in our situation. If you did, you may just regret your words.

I am stunned that someone in public office would think that it is acceptable to say such things. It is not. I would have thought that, (at the very least), you would have the decency to keep them to yourself!

You must be aware that these views are hurtful, and you must also be aware that they will affect your reputation, and popularity.

I hope that there are consequences for your actions, and that this incident isn’t just ignored. You do not deserve to have the privilege of holding public office.

I hope you will do the decent thing now, and step down from your post.

May I also suggest that you make a donation to a charity that helps disabled people. Should you need a list, I’ll be happy to provide one.

An apology is not enough.

Yours sincerely,

Helen Sims



*Councillor Martin has now resigned from his post.


Link to story (with update).

http://www.huffingtonpost.co.uk/2014/04/15/swindon-mayor-nick-martin-mongols-resigns_n_5151125.html?ir=UK%20Politics

First Love (Poem 2014)

Somewhere in me,

Lies a past that we

Had to leave behind.

Talking to you again

Should be easier, but then,

We never said goodbye.

So this is closure

By a few weeks exposure,

To a person that was my first love.

Unanswered questions

And old suggestions,

I'm looking at from above.

That I'm happy now

Makes it easier somehow,

But you and I understand,

Wherever I will be

There's a piece of me,

That is always holding your hand.

(Image: Grammarly)

#helenswriting

Brown (or White) Envelope Disorder - Living in Fear of the Letterbox

As I write this I am recovering from what we campaigners call ‘Brown Envelope Disorder’ – or ‘White Envelope Disorder’ (since it applies in equal measures now). It is what happens to a disabled or ill [benefit claimant] when a brown or white envelope appears on the doormat, particularly those marked ‘DWP’ –Department for Work and Pensions.

I was upstairs, waiting for my painkillers to kick in, when the letterbox went. For an ‘everyday’ person, it is normality. It is part of life. However, if you are disabled or an ill benefit claimant, living under the constant threat of an ATOS assessment or benefit sanction, [the sound of the letterbox] immediately causes the blood pressure to rise, and panic to kick in.

I sat on the bottom of the stairs, shaking and looked at the brown envelope (marked DWP) on the mat. Even though I know (rationally) that ATOS assessment envelopes are usually white, and that I am not due to be assessed for Personal Independence Payment (PIP) – the government’s replacement for Disability Living Allowance – for at least a year, the effect on me (and so many other ill and disabled people) is a reaction of pure fear. I sat there, unable to move, almost as if I was frozen to the spot. Rationality doesn’t come into it anymore. They play games, change dates, change criteria; so even if you think you know what’s what, (and when), for me (and so many others) the fear is still there. My heart begins to pound so loudly that I can hear it in my ears, and my palms begin to sweat. The rational part of me says ‘pick it up and open it. It’ll be fine’. The vulnerable, anxiety prone, part of me knows it is coming.

If I want to keep my life the way it is, I will have to go through a Disability Assessment for PIP, which is stacked against me. I will have to justify my right to the small amount of support I get. I will have to justify myself, my existence, my attempt at as normal a life as I can. I will have to sit there while someone judges me, and asks me leading, (unfair) questions, that are designed to deprive me of support and the things that able-bodied people take for granted.

I was born with Cerebral Palsy, and cannot walk or stand unaided. I suffer more or less constant pain, anxiety and depression – not to mention a few other things. The anxiety and depression have been made worse by this government and the media’s portrayal of disabled people as ‘scroungers’ and fakers. They have deliberately misled the public on the levels of benefit fraud, and we are paying the price.

I continued to sit on the bottom of the stairs, with all this going through my head. I feel worthless, and I know that I will be stripped of my Disability Living Allowance by the transition to Personal Independence Payment. I know that I am luckier than some. I have my husband (and his Pension Credit) to help us live, but for me it’s about independence. It’s about being able to behave like a ‘normal’ wife.

As things stand, I can help my husband pay the bills, I can take myself to the doctors or hospital appointments, I can go out (when I feel well enough), and see friends. I can feel like a ‘normal’ person. If they take my DLA, they take all that too – and I have spent years fighting to keep self-esteem and independence and to build a life for myself. I can’t lose it!

At this point, I am beginning to hyperventilate. ‘Be rational,’ I try to tell myself – ‘be RATIONAL!’ I fear the assessment itself even more than the consequences of it. Sitting on the stairs, I’m imagining all sorts of things. The assessor’s eyes look at me, and judging me. She looks tidy, she looks together, she tells herself. Yes I am, and I’m so lucky. What isn’t so lucky, is that I can’t sleep due to pain and anxiety….even though I’m so very tired.

I’m tired by life, and I’ve been made even more tired by government lies, and persecution, and the feeling that I have to struggle even more than I do already. Why is this happening to me? Why is this happening to any of us? Haven’t we been through enough? I start to cry. Eventually, mid panic attack, I ring my sister, who tells me to breathe deeply, and reminds me that whatever this government says or does, I am a person…and I am worth something. She tells me that if it is the assessment, I’ll handle it, and that they have no right to make me feel like this…in my own home. I tell her I’ll open the envelope and call her back, which I do.

It turns out, that is just a letter confirming my benefit amount, and my level of claim. I curse myself, knowing that I should have checked with a fellow campaigner before panicking, but like I said rationality doesn’t come into it anymore; and besides, there are so many other people like me (and worse off) that don’t have the campaigners to turn to, and don’t have the information at hand. Who cares about how they feel? This government certainly doesn’t!

As my heavy breathing subsides, I go back upstairs, and I’m physically sick in the toilet bowl. No one should be going through this. It is psychological torture, and I’ve had enough. This government needs to be held to account for its actions. There needs to be a proper impact assessment done on the Welfare Reform policy, because what I went through today is only a small part of it. It is causing pain, suffering, panic, malnutrition, isolation, homelessness, and even suicides. Somebody, somewhere, needs to make it stop… Now!

(Image: Google)
#helenswriting