Thursday, 15 May 2014

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!


Friday, 2 May 2014

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 ....