Almost five years ago I had to give up the career that I loved. It was a devastating and life changing time. It provoked a period of deep depression for the first time in my life, something no other difficult event had succeeded in doing.
After recovering from this I observed that the government was threatening serious cuts to the very support which had enabled me to embark on my career in the first place. I hated the idea that current young disabled people would be denied the opportunities I had enjoyed and so I became more involved in disability activism. It gave me a sense of purpose and I felt I was doing something worthwhile which would help others.
This took off in a big way in January 2012 when I helped research and write what became known as the Spartacus Report which was followed by a massive successful social media campaign.
This report clearly showed for the first time, with the government's own data, that they were lying about both the need and disabled people's support for reform to DLA. This report was on the whole met with great support by disabled people, bringing many people together on social media. It was used to try to influence voting on the welfare reform act and eventually provoked much media interest after surprise government defeats in the House of Lords.
After a long period of recovery I continued campaigning on the issues I cared most about, ie the enabling benefits like DLA, DSA and social care. While I would have liked to campaign about everything my health no longer permitted it and my involvement has got less and less each year as my illness worsens.
I co-wrote a report to try to prevent a cap on community social care being implemented in Worcestershire, was very involved in fighting the creation and evolution of PIP, particularly the 20 metre rule, and recently helped combat plans to water down DSA.
Among all this I helped and supported fellow disabled people and called out politicians whenever I caught them lying in the press, for instance about disability benefits being exempt from benefit uprating and freeze.
Today though all this comes to an abrupt end. I discover I am not wanted. Why? I am a "Sparty", and a "traitor".
Why again? Sue Marsh, who was the most prominent "member" of Spartacus decided in January to go and work for Maximus, the company taking over the controversial WCA "fit for work"assessments from the infamous ATOS.
Apparently this makes me a traitor too and makes all my previous work invalid, no matter that I have not worked with Sue for a couple of years (not that it should matter anyway).
How did I discover this? Just before the election, fed up of the infighting between disabled groups and people, I wrote a post calling for for union. Some decided to do just that and create a "union" or similar organisation. I eagerly wanted to help, health permitting, along with others who had been involved with various reports for Spartacus in the past.
Sadly things rapidly descended into conspiracy theories, with "Sparties" supposedly trying to take over and get their "leader" (huh?!) in power. Long discussions were also had over which disabled people should NOT be allowed to join. So much for unity.
What was said was nasty.
I no longer feel welcome and don't think I ever will again.
I fail to understand how anyone can have an issue with the work I have done (other than fundamental differences of opinion).
I fail to understand how work which was hailed as good at the time becomes bad simply because someone I worked with 3 years ago has done something they disapprove of.
I fail to understand how that makes me guilty and unwelcome.
I have been attacked in the past before. Ironically it has been on the one hand for not doing more about ESA and the WCA and on the other for not caring about inclusion, when in fact most of my campaigning surrounds "enabling" support.
People have always jumped to conclusions and made assumptions.
So maybe I shouldn't be surprised.
Disability activism has always been made harder by "fellow" disabled people than by the people we are supposed to be "fighting".
So now I am stopping. I don't have the physical strength to put up with this.
I feel like I did when I lost my career all over again.
I thought I had found something which helped replace that but it has been snatched away from me. I didn't think I would feel this bad ever again.
And the sad thing is that some people reading this are probably rejoicing.
How will we ever unite when this is the case? I wish all you disability campaigners luck but I don't hold out much hope.
Showing posts with label Spartacus Report. Show all posts
Showing posts with label Spartacus Report. Show all posts
Tuesday, 2 June 2015
Monday, 23 June 2014
PIP fiasco! But where was the press 2 years ago?
A little over 2 years ago, I and a handful of other disabled people wrote what is now known as the Spartacus Report.
We exposed the sham consultation run by the government into the abolition of DLA for working age claimants and its replacement by PIP.
Thousands of disabled people came together on social media in an unprecedented campaign to highlight the report and the importance of DLA in their lives.
Together, we sent the report to all the representatives in the House of Lords and all MPs.
Alarmed by the proposals and seeing the harm they would cause, we were doing whatever we could to mitigate the damage the then Welfare Reform Bill would do. Voting was still ongoing, the bill was not yet law, and it seemed there was still a chance to avoid disaster.
But we ran into trouble. No one in the media was interested. Yet the government had disobeyed its own rules. It had misled parliament. It was going to enact laws which would harm thousands of disabled people. Surely this would be enough to get the press talking?
The answer was an emphatic "No". Why? The same question came up again and again.
"Where is the human interest angle? Do you have an example? Can we talk to someone "suffering" please?"
We explained that no, no one was suffering yet, but that if nothing was done then there would be plenty of examples in a few years time. Our aim was to prevent that from happening in the first place.
The press was implacable. No sobbing disabled person? Then no, sorry. No can do.
As a lot of people know, we did eventually get coverage. This is only due to the fact that voting in the Lords swung in our favour against the government and this was, in part, put down to the impact of our report.
Questions were raised in the Commons by prominent MPs. It started to become a story.
Thanks to Baroness Tanni Grey-Thompson an amendment was added attempting to get PIP halted and a proper trial imposed. Unfortunately by now the government was desperate to avoid an embarrassing 4th defeat and the proposal was narrowly defeated by just 16 votes.
In any case it would hardly have mattered. The government invoked the archaic law of "financial privilege" to override all amendments the Lords had voted for. I have to say that this for me, was the day I realised democracy is dead.
Two years on and PIP is indeed failing. Inquiries have been launched. The Public Accounts Committee has deemed it a "fiasco" and condemned the lack of a pilot scheme, saying
There is no joy in "I told you so" though.
The press is now gleefully and ghoulishly commissioning articles and reports about terminally ill patients going without any support in the last few months of their lives or disabled people resorting to food banks.
While these articles need writing, I question the motives of those commissioning them. They can spare me their crocodile tears. They have finally got their "human interest" stories. Is this not what they wanted?
In my eyes they are complicit in this. Where were they when they were needed? If they really did care, they would have ensured that what the government was doing was fully reported and that the public was made aware of what was happening. Then maybe, just maybe, this whole thing could have been averted in the first place.
ADDENDUM: I would like to make clear that I do not hold individual journalists (such as the ones who have written the pieces linked to in this blog post) personally responsible for this lack of interest and demand for "tragedy". I do however hold the various newspapers and TV channels responsible, with a flawed commissioning process.
We exposed the sham consultation run by the government into the abolition of DLA for working age claimants and its replacement by PIP.
Thousands of disabled people came together on social media in an unprecedented campaign to highlight the report and the importance of DLA in their lives.
Together, we sent the report to all the representatives in the House of Lords and all MPs.
Alarmed by the proposals and seeing the harm they would cause, we were doing whatever we could to mitigate the damage the then Welfare Reform Bill would do. Voting was still ongoing, the bill was not yet law, and it seemed there was still a chance to avoid disaster.
But we ran into trouble. No one in the media was interested. Yet the government had disobeyed its own rules. It had misled parliament. It was going to enact laws which would harm thousands of disabled people. Surely this would be enough to get the press talking?
The answer was an emphatic "No". Why? The same question came up again and again.
"Where is the human interest angle? Do you have an example? Can we talk to someone "suffering" please?"
We explained that no, no one was suffering yet, but that if nothing was done then there would be plenty of examples in a few years time. Our aim was to prevent that from happening in the first place.
The press was implacable. No sobbing disabled person? Then no, sorry. No can do.
As a lot of people know, we did eventually get coverage. This is only due to the fact that voting in the Lords swung in our favour against the government and this was, in part, put down to the impact of our report.
Questions were raised in the Commons by prominent MPs. It started to become a story.
Thanks to Baroness Tanni Grey-Thompson an amendment was added attempting to get PIP halted and a proper trial imposed. Unfortunately by now the government was desperate to avoid an embarrassing 4th defeat and the proposal was narrowly defeated by just 16 votes.
In any case it would hardly have mattered. The government invoked the archaic law of "financial privilege" to override all amendments the Lords had voted for. I have to say that this for me, was the day I realised democracy is dead.
Two years on and PIP is indeed failing. Inquiries have been launched. The Public Accounts Committee has deemed it a "fiasco" and condemned the lack of a pilot scheme, saying
"The department's failure to pilot the scheme meant that the most basic assumptions, such as how long assessments would take and how many would require face-to-face consultations, had not been fully tested and proved to be wrong."They also revealed that claimants had been forced to turn to food banks, charities and loans.
This has resulted in "significant delays, a backlog of claims and unnecessary distress for claimants who have been unable to access the support they need to live, and in some cases work, independently".
There is no joy in "I told you so" though.
The press is now gleefully and ghoulishly commissioning articles and reports about terminally ill patients going without any support in the last few months of their lives or disabled people resorting to food banks.
While these articles need writing, I question the motives of those commissioning them. They can spare me their crocodile tears. They have finally got their "human interest" stories. Is this not what they wanted?
In my eyes they are complicit in this. Where were they when they were needed? If they really did care, they would have ensured that what the government was doing was fully reported and that the public was made aware of what was happening. Then maybe, just maybe, this whole thing could have been averted in the first place.
ADDENDUM: I would like to make clear that I do not hold individual journalists (such as the ones who have written the pieces linked to in this blog post) personally responsible for this lack of interest and demand for "tragedy". I do however hold the various newspapers and TV channels responsible, with a flawed commissioning process.
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