Two lives? Not any more.

I read a post this morning by a fellow lupie about "getting frustrated about what you used to be able to do". While I long ago stopped doing this, it resonated strongly with me for the phrase "life seems to separate into the time “before” the incident and life “after” the incident."

This took me a very long time to get over. I used to say that I had had two lives. Worse, it felt like the first was the good and "proper" one, while the second was a bad, "wrong" one. For several years I hid all "evidence" of my "old life". For instance my old sports medals got put in a box under the bed. It was too painful to look at them.

But over time, this changed. My life now feels like a whole, albeit with a drastic life changing event at the start of adulthood. But it makes no more sense to say I had two lives than, say, for married couples to say they had two lives: pre and post marriage. They are just different stages of a varied colourful life with its ups and downs.

I won't say I don't get fed up about it. I always find the anniversary of the onset of my illness difficult. On the one hand I don't want to be ill. On the other hand I have been sick and disabled all my adult life. It has shaped who I am. So given the chance to go back and not become sick, would I do it? Perhaps not. It is confusing quite frankly.

What I would do given my current poor state of health is jump at the chance of an improvement. It doesn't even need to be a cure. I would just like to be well enough to go out and leave the house on a regular basis. Maybe even well enough to work again.

Anything else? I could take it or leave it. For instance I'm not that bothered about being able to walk or not. While access is still a nuisance, my wheelchairs would allow me to do most of what I want, if only my health would play ball.

But for all that I rarely think about cures or improvements.  I tend only to think about the things I can do right now. And if I do think back to my pre illness stage (or even my earlier less impairing stages of illness), I find they are not a source of frustration but one of joy. Those sports medals? They now hang on my bedroom wall and bring back a host of happy memories whenever I look at them.

#BADD2016 Earning your degree differently should be ok

This is my post for #BADD2016, Blogging Against Disablism Day 2016

People who know me will know that I have a maths degree. So far, apart from the astonishment that anyone would *want* to do a maths degree, nothing too much out of the ordinary.

What makes it less ordinary is *how* I got it. You see, I was extremely ill during those years and spent a lot of time in hospital and/or confined to my room.

When it first became clear during my first year that I was going to miss a lot of lectures, what do you think the reaction of the university and my doctors was? Was it how can we help you keep up? (ha ha ha)

No. Straightaway I was told to go back home to my parents who could "look after me". The most "support" offered was a 1 year deferral.
But I now knew I had an INCURABLE illness (diagnosed in Easter of my 1st year)! How the heck was this going to help?

At first I was very dispirited. I decided that the best option would be for me to do my degree at home through the Open University. That way I could get the course material and then study it in my room.
This is when I (finally) had my *lightbulb* moment.
Why did I HAVE to study like everyone else?
What rule said that the only way to get a good degree was to have a 100% attendence?
As it turned out, at my university, none.

So what was stopping me in creating my own Open University style course right there?
I already had personal care in place from social services, so that was thankfully not an issue.
I could stay at university with my new friends, enjoying the benefits of university life when well enough.
When really ill and unable to go to lectures, I could get notes brought to me and work on my own. I could even buy books to help me with money from DSA.
Excited, I decided that I WOULD go back and attempt my second year.

But I encountered resistance. "This is not how we do things."
Among other things:

• Friends bringing me notes would be disruptive to them. (photocopying their notes after lectures and bringing them when they visit? Really?!)
• I shouldn't be "encouraged" to miss lectures by authorising other students to lend me their notes.
• Some lecturers gave out printed notes and, in a bid to boost attendence,  had a policy of not giving them out to students who did not come. They initially refused to make an exception for me.
• One course had 10% set aside for handing in weekly coursework (1% per paper). I missed some deadlines due to being in hospital. This was not accepted as an excuse. The lecturers running it said it was "only" 1% so I "shouldn't be concerned".
• I shouldn't take the exam having missed so many lectures because I would fail (no, I wouldn't, and I should be allowed to try).

A special commendation should be made to my tutor who fought my corner tooth and nail and solved most issues for me.
It was only when I passed my exams with flying colours that attitudes completely changed.
After that lecturers fell over themselves to be supportive, even visiting me in hospital to bring me notes.

Unfortunately not everyone is so lucky.
I follow the twitter feed @PhDisabled.
What is clear is that almost 20 years on, disablist practises such as grades being given for attendence, or no allowances being given for deadlines are still common.
It is also clear that universities are still set up for the traditional way of learning and simply cannot cope when a student needs to be different.
Yet it is ok to be different. I even went on to do a PhD and became a maths researcher!
I am proof positive that what is important is *what* you learn, not *how* you learn it.

Iain Duncan Smith Legacy

EDIT: On November 07th 2016 the UN found the UK guilty of grave and systemic violations of disabled people's rights.

This was a direct result of the cumulative impact of the policies listed below.

The following is a list of policies and damning court decisions and findings undertaken under the watch of Iain Duncan Smith (emphasis on those affecting disabled people):

• April 2011:  LHA (Local Housing Allowance) is reduced to 30th percentile of local housing market instead of 50th with immediate effect.  Affects 775,000 households.
• April 2011: Uprating of benefits is changed from RPI to CPI (a cut expected to save £6 billion).
• January 2012: LHA single room rate is extended to under 35s instead of under 25s. Disproportionately affects disabled people who cannot flat share due to disability but do not meet the stringent criteria for exemption (mid rate care DLA).
• April 2012: Contribution based ESA WRAG is time limited to 1 year (out of work benefit for those too sick/disabled to work), affecting 700,000 disabled people.
• April 2012: The "Youth Provision" is abolished. This allowed young disabled people to access contributory benefits. It results in loss of income for 80% of those benefiting from it and total loss of income for 12.5% of those.
• May 2012: LHA regulations are found to discriminate against disabled people for failing to allow an extra bedroom for overnight carers or children who cannot share due to disability.
• December 2012: New Sanctions rules are introduced, allowing sanctions to start sooner and for longer.
• 2012-2013: Remploy factories are closed down. Iain Duncan Smith infamously says workers sit around making cups of coffee. 3 years on less than half have found employment.
• January 2013: ESA regulations are amended, making it harder to qualify. Assessors may make a decision based on therapy or aids a claimant *could* have whether or not they do or whether it is in fact available, possible or (in the case of treatment) they have given consent. Physical impairments may no longer award points in the mental health and cognitive section and vice versa. Eg a physical injury causing cognitive impairment would have all such symptoms ignored.
• April 2013: Legal aid is abolished for welfare cases.
• April 2013: DLA is begun to be replaced with PIP to make 20% savings (benefit to cover extra costs of disability). 500,000 disabled people are expected to lose their benefit. By 2016 14,000 disabled people have had their motability car repossessed. This is just the start as most people have not yet been assessed due to errors and delays. EDIT (March 2018) This figure has now ballooned to 75,000, 43% of the 175,000 motability clients so far assessed.
• April 2013: The Social size criteria more commonly known as the Bedroom tax is introduced. This removes housing benefit for "spare" rooms for social housing tenants. 660,000 households are affected, two thirds of which include a disabled member. 
• April 2013: All benefits are capped to a 1% uprating until 2015, bar Carer's allowance, DLA/PIP and disability premiums. Ministers lie by claiming disabled benefits are unaffected, even though ESA is included (even the support group to some extent).
• April 2013:  Council tax benefit is abolished and replaced by council tax reduction scheme, administered locally. This leads to a postcode lottery with many disabled people, including those in the ESA support group, liable for up to 25% of their council tax.
• May 2013: UK Statistics Authority finds ministers from the DWP repeatedly used false disability statistics to justify benefits cuts.
• May 2013: In a legal court case the WCA is found to discriminate against claimants with mental health illnesses. As yet the recommendations to remedy this have not been implemented.
• October 2013: Non time limited unpaid mandatory reconsiderations are introduced as an extra step before being allowed to appeal benefit decisions.
• March 2014: The Work and Pensions Committee warns the DWP "to exercise care in the language used in accompanying press releases and ministerial comments in the media, to ensure it avoids the risk of feeding into negative public views about benefit recipients."
• June 2014: The implementation of PIP is called a "fiasco" by the Public Accounts Committee after a "failure to implement a pilot scheme 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."
• July 2014: A court case against the restriction of high rate mobility from 50m to 20m in PIP fails. However the DWP admits (para 80) "we were aware that the vast majority of recipients of DLA were individuals with genuine health conditions and disabilities and genuine need, and that removing or reducing that benefit may affect their daily lives".
• August 2014: Figures reveal a 580% increase in ESA sanctions.
• November 2014: The Government Work Programme is branded a failure by the Public Accounts Committee. 90% of ESA claimants have not been found jobs and providers are spending less than half than promised on these hard to place groups.
• March 2015: A new study by Cheshire Hunger shows that problems with benefits account for nearly half (47%) of all referrals to food banks, with sanctions accounting for 11% and ESA claimants 4%. A significant number remained dependent far longer than the initial crisis.
• April 2015: A second study published in the BMJ finds that the unprecedented rise in foodbanks (soaring from 29 Trussell Trust banks in 2009-2010 to 251 in 2013-2014) is linked to higher unemployment, sanctions and cuts in welfare spending.
• June 2015: The delays to PIP are ruled unlawful in the High Court.
• June 2015: The ILF is abolished. 17,000 people lose funding to pay for their personal care. Some funding is given to councils for the first 2 years and then agreed for a further 4 years, but it is not ringfenced. Most disabled people affected see huge cuts to their hours and loss of independence.
• August 2015: Following FOI requests, figures are released showing thousands of people died after being found "fit for work."  However the statistics released are confusing, omit key data and make it hard to draw accurate conclusions.
• August 2015: The DWP admits to using fake claimants in leaflets praising the use of sanctions.
• September 2015: Coroner rules that the death of disabled man Michael O'Sullivan in 2013 was a direct result of  his failed WCA.
• September 2015: The UN confirms it is investigating the UK for "grave and systematic violations of the human rights of disabled individuals", the first time such an investigation has taken place in a first world country.
• October 2015: A cap to Access to Work is introduced, limiting or eliminating entirely work options for those with higher support requirements.
• November 2015: Independent research is published in a BMJ Journal suggesting 590 suicides and 279,000 cases of reported mental health illness can be directly linked to controversial WCA. 
• December 2015:  Latest figures show that PIP appeals now account for 38% of all appeals and carry a 60% success rate. ESA and DLA success rates are 58% and 55% respectively. In contrast, appeal success rates for tax credits or income support run at between 25 to 40%.
• January 2016: The Bedroom tax is found unlawful and discriminatory at the court of appeal in the case of disabled children requiring overnight care and people requiring panic rooms.
• February 2016: Figures show half of those reassessed for PIP are losing their motability vehicle. There are 650,000 disabled people on the scheme and only 31,200 have been reassessed so far. Of these 14,000 have lost their car or wheelchair. EDIT (March 2018) This figure has now ballooned to 75,000, 43% of the 175,000 motability clients so far assessed.
• January 2016: Conservative Disability Group launches inquiry into abolition of ILF following widespread concern about its impact.
• March 2016: Evidence has emerged that a "prevention of deaths" letter was received by the DWP from a coroner in 2010, following the suicide of a disabled man who failed his WCA. Graying and Iain Duncan Smith failed to act or respond despite a legal obligation to do so, and the  WCA was rolled out with no change to millions of Incapacity Benefit claimants. The letter was also not shown to Professor Harrington, later in charge of reviewing the WCA to make it better and safer.

About to be introduced:

• 2016-2018: £22 million is to be spent on the DWP to recruit presenting officers to support the department in PIP and ESA tribunals. (Recall that in contrast, claimants do not have recourse to legal aid, axed in April 2013).
• April 2016: All benefits will be frozen for the next 4 years bar DLA/PIP and disability premiums. Ministers lie again about disability benefits being unaffected as once more ESA is included, including the Support Group to some extent.
• April 2016: Disability benefits, premiums and carers allowance are frozen for 1 year due to a negative CPI in September 2015.
• April 2016, Universal credit: Recent cuts to tax credits which were dropped due to fierce opposition will be included as part and parcel of this benefit
• Universal credit (law passed in 2012):  There will be no equivalent to the disabled working tax credit. Help will only be available to those who have "limited capability for work or work related activity". This will affect up to 116,000 working disabled people at around £40 per week (however the timetable for this is unclear, as the UC system can currently only cope with simple cases).
• September 2016: DSA (Disabled Student Allowance) will be cut. Government is withdrawing funding entirely for some types of support and hoping universities will pick up the cost. This will affect 70,000 disabled students.
• 2017: ESA WRAG rate is to be cut by a third by £30 per week to align it with JSA. This will affect new claimants and those with a 12 week break in their claim.
• April 2018: Social housing rents are to be capped at LHA rates. This will see large numbers of evictions of single people under the age of 35 suddenly only eligible for shared rate (see above). It will also devastate the supported housing sector whose rents are naturally higher, affecting disabled people, elderly people, women's refuges and more.
• April 2018: Support for Mortgage Interest (SMI) for people on very low incomes to be changed from a 'benefit' to a loan from 2018. Waiting time from application also changed from 13 to 39 weeks.
• By 2020: Social care is facing a £3 billion funding gap

• Universal Credit (law passed in 2012): Disabled people face the abolition of the Severe Disability Premium (SDP) at a cost of £62 per week. This will affect new claimants and those with a "change of circumstances". 230,000 disabled people currently receive this premium and will see their benefit frozen and/or eventually cut.
• Universal Credit (law passed in 2012): The disabled child premium is to be halved, affecting an estimated 100,000 disabled children.
• Universal Credit: Disabled people will have to attend a mandatory "health and work conversation" (work focused interview) BEFORE their WCA. This puts the onus on a medically untrained DWP jobcentre work coach to decide what the claimant is capable of doing prior to any medical assessment. Disabled people will be sanctioned if they do not attend.

March 2016: The budget sees further extensive proposed cuts to PIP: Iain Duncan Smith finds his conscience and resigns...??!

Important comment: Other than the major *direct* impacts on disability I have made a conscious decision not to include the fiasco which is universal credit in this timeline. This is because an account of the various stages of Universal Credit, the controversial inquiries, statements, court cases amd statistical rebukes concerning it would require a blog post all to itself.

NB: Please feel free to let me know anything I have forgotten.

An Unfond Farewell to Disability Activism

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.

A union (or whatever) of disabled people?

Guest post by Sam Barnett-Cormack @narco_sam

Given the results of this general election, it’s more clear than ever that we need to make use of every tool outside of Parliament to stand up for ourselves. To stand up for our rights, our participation, our safety and our sanity.

It’s my feeling that a new national organisation, formally constituted and mebership-based, would be a strong way to ensure the voice of disabled people in politics, in civil society, and in the media. I have nothing against DPAC and Black Triangle, and I hope their work continues. Indeed, the organisation I envisage would hopefully work with them, along with all sorts of DPULOs, and anyone else that it makes sense to work with. The organisation I envisage would be dedicated to constructive policy work and campaigning in all areas, not just political. Inaccessible town centres, healthcare inequality, disabled people’s sports – raising the profile of all these, and more, and saying how we, disabled people, want things fixed – and having the data and policy work to back it up. And yes, that includes working to protect the social security that so many disabled people rely on, but also so much more.

We don’t have to call it a union – it wouldn’t exactly be part of the trades union movement, but I see it working in a similar way. A national executive, policy votes, meetings and similar. Of course, meetings can never be terribly accessible for many disabled people, so we’d do more absentee voting at meetings, and more things by referenda. But we would have a solidly defined constitution, and membership. So it could be called ‘union’, or ‘association’, or ‘fellowship’ – there’s arguments for and against a lot of language options. What’s important is that we do it.

I truly believe that, done right, such an organisation can carry the confidence and embody the unity of disabled people. We won’t all agree on policies, there will be internal politics, but we can see how many organisations out there make this work. We agree to follow our collective will in essentials, even while being free to disagree publicly. Not every disabled person would support it, but if we do it right, enough will. A credible, mature and accountable voice for disabled people on the national stage – with accountability, making it easy for everyone to participate, and allowing for differences of opinion without fragmenting.

I don’t have all the detail worked out, but here’s my thoughts so far. Two-stream membership, with different voting rights – self-identified disabled people as full members, and carers and allies as associate members. Our carers and allies are vital, and they must have a voice, especially carers, but the organisation must be led by disabled people ourselves. A constitution that embeds concern for intersectionality, that we will not discriminate against disabled people on the basis of other characteristics – be it race, sex, education, economic status, national origin (or even nationality), whatever. Not party-political, but admonishing all political parties (and politicians) equally, as merited. Praising that which is good and castigating that which is bad. Caring as much about supporting each other as about making noise and seeking change – providing advice and advocacy would be an excellent thing to incorporate.

Yes, an organisation doing this is going to need money. I don’t envisage employed staff any time soon, though if it takes off that’s a possibility. But organisation generally costs money, like room hire, renting a PO box, printing, and even legal advice. Some of that might come from contributions in kind, and we can always hope for a few big donors, but membership will probably need to cost money. I don’t know how much. Perhaps charge associate members more than full members, partly due to the fact that disabled people are more likely to be in poverty, and partly because that demonstrates our allies’ commitment to us as disabled people. Of course, concessional rates would be needed – carers are scarcely in a better position than disabled people, certainly. I’d love to sit down with some other people who are prepared to get this off the ground and sort out these initial details. Heck, I’m happy if other people run with the idea and I just end up a member, but I’m willing to do work to start it – I just can’t do it all.

There’s so much more that I could say: how we can directly address businesses and other organisations, not just politicians; how we can facilitate a structure of affiliate organisations to allow for local branches; how a clear forum that we have ownership of will allow us to be open about our fears and our hopes and, yes, our differences.

Let’s do this thing.

A Call to Union

Post written for  Blogging Against Disablism Day 2015, #BADD2015

"Scroungers, cuts, unfair tests", how dare anyone treat us thus, people cry.

"Incapable, unfit, inferior", this is how you make us look, others despair.

"Pain, misery, poverty", why do you refuse to see?, more shout.

"Welfarists, pity seeking, anti inclusion", this is what you have become, some accuse.

"A few" becomes "most".  

"Most" becomes "all".        

Miscommunication, anger, fear. 

Won't anyone stop to listen? 

Fragmented, upset, distrustful,    

We will not have a voice until we do.

Until then "They" laugh and carry on.  

And harm is done to all.

For BADD 2013 I talked about the difficulties we, as disabled people, faced in simultaneously pursuing two goals to fight disablism.
The first was challenging the perception that disabled people are by definition incapable of working, particularly at the highest levels.
The second was challenging the "if you can type you can work" type argument. This meant ensuring that the general public understand that it is possible to be unable to do sustaining paid work and that appropriate support must be in place without social condemnation.

I am sorry to say that we have failed miserably, with unspoken disagreements over which goal to follow and crucially, how to go about it, causing rifts and friction.

What I see around me today are disparate disability "groups" often at odds with one another, unfounded accusations flying back and forth, and increasing stereotyping and disablism, all coming ironically from disabled people ourselves.
Here are just some of the types of things I have heard repeatedly from many different sources.

• "Disabled people with chronic illnesses feel sorry for themselves and don't want to work"
• "Disabled people who work look down on those who don't and don't understand what it is like"
• "All disabled people could work if they really wanted to"
• "Disabled people with chronic/mental health illnesses who work/go back to work can't have been that sick to start with"
• "Disabled people with visible impairments have it easy (insert uninformed rant)"
• "Disabled people with invisible impairments have it easy (insert uninformed rant)"
• "Disabled people who campaign about welfare have never worked on or know anything about any other issue, and are against true inclusion"
• "Disabled people who don't directly campaign about welfare issues don't care"
• "Person A campaigned about Issue B, therefore they think "this" about Issue C!" (argument ensues)

Those of you thinking "but it's true" might want to reconsider the earlier lines "a few becomes most, most becomes all"

A few disabled people -> Most disabled people -> All disabled people

Suddenly one example stereotypes whole segments of disabled people.

This sort of labelling, insults and assumptions would be pounced on and defended against if coming from an outside source. So why are we allowing this to happen?
What is this if not disablism of the very kind we strive so hard to eliminate?

And so, I call for people to pause. To communicate. To try to understand each other's concerns and goals. Most importantly, to unite.
Until we do, we cannot create strong messages and policies which leave no one out, which both enable and support every one of us, whatever our impairments or current situation.

Unless we achieve this, in every sphere of life, be it education, welfare, employment, social care, health, family and social life, access and transport, many new policies will be unfair, unsupportive or even intrinsically disablist.

As a new government is about to be formed, there has never been a better time to get our act together and make our impact felt over the course of the next 5 years.




Post written for  Blogging Against Disablism Day 2015, #BADD2015

I'll be back!

Wow. Well this year has been rubbish!

I've been offline for most of it so far, barely making contact with anyone either on Twitter or Facebook. As anyone who is mostly housebound and who relies on social media for a lot of their day to day social interactions knows, that is not a good sign!

Unfortunately I've been very ill this year and unable pretty much to do anything. January wasn't great but everything went pear shaped from the start of February. I'm only just starting to recover (went outside last week!), although there are still extra issues compared to normal.

I am slowly starting to use Facebook and Twitter again and at some point I hope to be well enough to write a proper blog post. I miss writing, however infrequently I can manage it.

I'll be back!
Until then, bye, and back to my duvet...

Going back to work from the Support Group

It is by now pretty common knowledge that Sue Marsh has accepted a full time position as "Head of Customer Experience" with Maximus, the company of controversial reputation taking over the WCA from the infamous ATOS.

There has been a lot of understandable anger to this, with many people left feeling abandoned and betrayed. However I have been slightly surprised at the backlash at her taking on a job at all. I do understand that there is always the fear that seeing one person successfully returning to work may lead a misinformed public to say that "everyone can do it", or that such a person shouldn't have been on benefits in the first place, but I feel that we ourselves should know better.

The Support Group is a strange beast. Generally we say that it is for those "too sick to work". But this is incorrect. It certainly includes those people but it is far more complex than that and for many it is not so black and white.

On the one hand some people automatically qualify on the basis of some straightforward criteria. These criteria, I might add, are not always ones which mean you cannot work.

For instance one of them I know well since it applies to myself, is that you are unable to walk or propel yourself in a wheelchair for 50m. So in other words pretty much any electric wheelchair user automatically gets into the support group.
While it is tremendously difficult to find a job as an electric wheelchair user, due both to transport issues, access difficulties and employer prejudice, it is not impossible, especially if there are no other aggravating factors preventing them from working. With the right support such people could quite legally go straight from Support Group to full time work. Unfortunately getting this support is generally the sticking point as given the level of disability it may also require good support from social services as well as high levels of support at work.

Other people are in the support group for much less straightforward reasons and may have symptoms which will directly impact on their work. Where the electric wheelchair user may be able to find a job where their impairment is not an issue, for some people this is never going to be possible. Their impairment will affect everything they do.
This group includes many people with chronic illnesses, people with symptoms such as pain and fatigue (not exclusive to illness), mental health illnesses, learning disabilities, and impairments such as speech, hearing or visual impairments.

Among these people I believe we have a further two groups.
First there are those who would be able to work if the perfect job came along with all the right tailor made adjustments. Even then, given that they are in the support group, it is highly likely that even this perfect job would take a toll on their health in some way. This should therefore be a choice and not an obligation.
Then there are those who would not be able to work even if every possible adjustment was made and/or only a few hours a week were required.
EDIT: For an example of the sort of toll even the "perfect" job can take, please read this excellent but hard hitting piece on the blog Benefit Scrounging Scum. @Bendygirl, who recently went back to work, highlights the dilemma between her desire to work, her rapidly deteriorating health, and the need to look after her health. Work, contrary to government policy, is not always good for you.


I had one such "perfect" job for many years in academia as a researcher. I worked on results not hours per week. I could work from home as much as I wanted, and could work lying down in bed. It didn't matter that I often and unpredictably had to have time off or spend time in hospital as long as I still got results I needed.
Later on when I got even sicker, I was able to go part time and it was well enough paid for me to do so.
This job did take its toll physically. It increased pain levels and my health suffered. I chose to do it because I enjoyed it so much and felt that the emotional and mental boost it gave me was worth the physical downside.

Had I not been "lucky" enough to get it, I would have been in the Support Group of ESA. Vice versa, had I been in the Support Group of ESA at that time and been offered it, I would have quite legally gone straight from Support Group into employment, even though I was very sick and disabled.

However although I am indeed now in the Support Group of ESA, I am now much sicker than I was then. Even if that "perfect" job came up again tomorrow, I would not be able to take it, not at any price.

I think this illustrates quite nicely how different people in the Support Group can be at very different distances from employment depending on how their impairment affects them.
Some could take a job given a non prejudiced supportive employer, an accessible workplace and an Access to Work system fit for purpose. Social care support also needs to be fully in place as required.
Some could take that ultra-rare "perfect" job that somehow fits around their impairment and would choose to put up with the downturn in their symptoms.
Some couldn't take any job under any circumstances.

Nearly all would like to work if it were possible. It will be possible for some, but the barriers I've identified though will make it impossible for the great majority, especially now that Access to Work and social care is struggling to provide the required support.

Where are all the disabled people?

In the wake of several disability related stories in the spotlight in the news recently, I have noticed many people disparaging the statistics on the number of disabled people in this country.

Statistics

One statistic says that as many as 12 million, roughly one in 10 people in the UK are disabled. This statistic is constantly derided and often cited as proof that people these days are less resilient or fiddle the benefits system.
However this figure refers to people disabled under the Equality Act, ie have a physical or mental condition which has a "long-term and substantial effect on your daily life". Dependent on severity this might include certain long term illnesses such as diabetes or conditions such as dementia. This is why the figure is much higher compared to stereotypically "disabled" as the general public generally understands it, eg "in a wheelchair" or "blind". It should be noted that half of these are over pensionable age, a sign of our aging population.

Some people take this to mean that 12 million people are on disability benefits. Nothing could be further from the truth. Criteria to receive disability benefits are stringent. Benefits are given if the effect of the disability will give rise to significant costs due to mobility difficulties or the need for personal care (DLA, or Attendence Allowance for pensioners only). Another (ESA) is given if the person has become unable to work.
The number on each benefit is 3.13 (DLA), 1.46 (Attendence Allowance) and 2.15 million (ESA) respectively, with significant overlap between ESA and DLA.
NB: DLA figures includes pensioners who claimed DLA as working age people and then later passed pensionable age. 
Even here, many people disbelieve these statistics, saying it is impossible for so many people to be so sick or disabled as they don't know or see any.

Hidden disabled people

So where are we?
Well, when it comes to very sick and disabled people, many of us are hidden away. For instance, I am  mostly housebound. This is not all that unique. I communicate with the world through the internet and am in contact with many other sick and disabled people, who, like me, are rarely well enough to go out.
Those same disbelievers are the people who walk past my flat every day, completely unaware that they are feet away from one of these very sick people they think don't exist.
Some years ago I applied for the wheelchair discount on my council tax. I am so hidden away that when an officer from the council came round to check that I really was a wheelchair user, some of the neighbouring flats told him that no wheelchair user lived here. Given that I could go months without leaving my flat, they had never seen me!

Another point is that some people can be very sick but "look fine". Certain illnesses and conditions (lupus, MS, Crohns, mental illness) can have devastating, disabling and sometimes even life threatening symptoms yet which are not visible to the naked eye. You will walk right past such people without knowing it. These people are "hidden in plain sight".

As an aside it is an ironic effect of modern medicine that there are more disabled people around. While some cures have doubtless been found, it is often the case that previously fatal illnesses can be treated but not cured, causing long term disability. Similarly, previously fatal injuries and conditions are now survived but not necessarily fully recovered from.

Too many scooters!

Strangely, at the same time that people scoff at disability figures, a large number complain at the number of mobility scooters/wheelchairs in our streets. They groan that it never used to be this way and many take it as a sign that people are lazy or pretending to be disabled. Particular disdain is reserved for anyone who is overweight and "therefore" uses a scooter.
On this last point they should consider that exercise may be difficult for someone with mobility and very possibily health problems. They may also be on medication which actually causes weight gain. Cause and consequence should not be mixed!
Secondly, the fact that more mobility scooters and wheelchairs are around is something to celebrate. It is a consequence of the very hard work of the disabled generation who came before me and fought for disability access. There is still a long way to go and many problems, as was illustrated by the very recent court decision on wheelchair spaces on buses. But it has freed many disabled people to get out and about much more easily.
When people ask what these disabled people used to do, the answer is simple. They were stuck at home or even in institutions. Just because they weren't seen didn't mean they weren't there. I remind you of myself and my neighbours!


We sick and disabled people really are here. Some of us are so sick that we are hidden away. Others are hidden in plain sight. Finally, despite setbacks, we should be celebrating, not bemoaning the fact that those of us with mobility issues are better able to access society.

Wheels on the bus

The Court of Appeal has overturned a court ruling which said that First Bus's policy of not requiring passengers to make way for wheelchairs in designated bays was unlawful.
Specifically Doug Paulley had taken the case to court after he was denied access when a mother refused to wake her sleeping baby and fold her buggy to allow him to board.

As seen by reading the BBC comments, feelings run high on this issue and there are many misunderstandings and some quite frankly silly questions.

• It is disgraceful that a paying passenger be forcibly removed from a bus for a wheelchair user.

No one was saying this should happen. If the bus is full, then the bus is full. However, if the wheelchair bay is taken by a buggy, then this should be folded up to allow the wheelchair user to board.
The original ruling said that the company should require parents to do so. The new ruling says that parents can choose whether or not to comply with a request, potentially leaving wheelchair users behind even though there is room on the bus.

• Babies are just as disabled as wheelchair users and have just as much right to the bay.

Babies are not (generally) disabled and with the assistance of their parent, have far more options than disabled people. Disabled people cannot usually get out, fold their wheelchair and go and find a vacant seat. Parents and their babies do have this option. I would however hope that someone might help them hold bags/baby/fold buggy and give them a seat if there is standing room only.
The exception to this is for disabled children/babies who cannot leave their buggies.
It is worth noting that parents used to use buses long before there were disabled bays. These are a necessity for wheelchair users as opposed to a useful convenience for parents.

• It is wrong to expect a mother to stand with the baby in her arms just so a wheelchair can come on board.

There is no reason for this to be the only possible outcome. If there is only standing room available one would hope that other passengers would do the right thing and offer the mother their seat.

• And what if another wheelchair had been on board? Will you sue every time you can't get on board the bus?

No, of course not. If the wheelchair space is taken by another wheelchair, then tough luck. The bus is "full". In this case, just as for non disabled passengers, you wait for the next bus. No one has ever suggested otherwise.
This isn't simply about the space being taken and having to wait. This is about the space being taken by a non disabled person who *could* move out of the way but doesn't want to.

• Disabled people want equality but don't like being treated equally! 

Disabled people want the equal opportunity to travel. If the bus is full then they will catch the next one like anyone else. But this is not what we are talking about here. There IS room for the wheelchair user. They are being prevented from boarding because a passenger won't move out of the way.
What would a non disabled person do if someone stood in the doorway and refused to get out of the way?!

• This is no big deal. Disabled people can just catch the next bus!

The problem with this argument is that it is circular and keeps happening. The next bus often says exactly the same thing! Where I live I can often expect to wait for 3 or 4 buses before I am allowed on board.
The end result of this ruling means that although the buses are physically accessible, in practise they are not as I STILL cannot get onboard.

• It doesn't matter as I never see wheelchair users on buses anyway!

Well quite. Perhaps now you see why. I don't use buses because of this very issue.

• This should never have gone to court. It was just some militant guy trying to get some money.

I don't know the claimant and cannot comment on his motives. What I do know is that many disabled people, myself included, were waiting for the outcome of this ruling with high hopes. In my case I will effectively continue to be barred from using buses in my area.

Disability vs Sickness, yet again.

There have been a number of blog posts recently either highlighting the divide between sickness and disability or calling for more unity. This has not been very successful and a number of the issues are, in my eyes, very well explained in the research paper "Why talk of illness entrenches discrimination" (Aug.2014, pay to view) by Liz Sayce from DRUK.

It assumes sick people only seek compassion, pity and being relieved of the duty of work. They have abandoned the social model and the need for support and removal of disabling barriers. It further goes on to assert that the recent welfare battles to ensure that some sick people are not forced into work when it is inappropriate is damaging to disabled people.

This paper illustrates perfectly how many disabled people feel about people who are sick. They are embarrassed by them. They make disabled people look bad. Employers should feel that disabled people can work just as well as non disabled people. It is damaging to "the cause" to mention that some people, as a result of their impairment, will either not be able to work, or will need to work part time or in a different way to others.

It is completely wrong to assume that everyone who identifies as "sick and disabled" doesn't need or believe in the social model. It is fair to say that many believe that it could be refined so as to better take impairment into account, while others say that it already does and that it has been misrepresented by some who take it to extremes.
The barriers in life for sick and disabled people tend to be less tangible than, say, the straightforward access requirements for a wheelchair user. Someone who is housebound might need their GP to offer them email access or telephone consultations. In the world of work, adaptations might include flexi-time, working from home, payment on results instead of hours, part time work, regular breaks, job sharing and many other such arrangements.
Yet even when sick and disabled people campaign for such practices to be more widespread they are met with anger from "old school" disability groups who, again, feel that this promotes discrimination by casting a bad light on "disabled workers". Yet these adaptations are just as necessary as a wheelchair ramp and the world of work is a distant impossibility without them.
Furthermore this impacts on many disabled people who would benefit from such improvements. It is not so simple a division as sick disabled people to one side and healthy disabled people to the other. Symptoms such as fatigue and pain for instance are not limited to illness.

But sometimes even with all the support in the world it will be impossible for some individuals to work. Please note that I say "individuals". Care must be taken not to imply that large groups of people with a certain diagnosis or impairment, rather than individuals, should automatically be assumed not to be able to work.

Main reasons for not working might include:

• The number of hours you can work being so few, or your reliability being so poor that working is completely economically unviable. In my case for instance, after 17 years of a deteriorating illness I was down to roughly 1 hour a day in a good week, and some weeks none at all. 
• The effort of working making the illness unbearably worse or even endangering health (this happened to me). This relates back to my first point as decreasing the number of hours to a point where it would not impact on the illness to an unreasonable or dangerous point would render the job economically unviable.

These are not pleasant positions to be in. Losing your career is a very difficult stage of your life and there is very little support for it. Instead there is condemnation, even from some in the disabled community. But the fact that some individuals are not able to work will always be true and cannot be hidden away, however inconvenient it is. At this stage the support required moves from removing barriers in the workplace to a financial one.
I don't believe this is seeking compassion or pity. In fact I still believe this is a social model viewpoint and that it is simply the type of support required which has changed. Without that financial support everything else will fall apart and the sick and disabled person will lose all inclusion in society.
I would even go further and say that there is a big unmet need for support other than financial for people who cannot work. This could include for instance signposting to free online learning sites, IT support for people who are housebound, and so on and so forth.

The view that if a person isn't working then they are absolved of all social responsibilities is a short sighted one and one which is a barrier to sick and disabled people in itself. It is sad to see it coming from the disabled community.
As someone who "lies in bed all day", I still feel strong connections to society. Thanks to technology I am able to keep in touch with many people. I support and advise people online. I have been able to take part in and attempt to shape political debate. I make sure to maintain relationships with many friends and family and even the local community. I continue to try to educate myself. More recently I have been able to take on a very part time role as a volunteer (6 hours a year!).
All of these things include social, educational, family and leisure connections and responsibilities. They are low level time and energy consuming compared to working. They are self imposed and don't create a financial revenue. This doesn't mean they don't exist, aren't important or don't have value.

In her paper Liz Sayce says that sick and disabled campaigners have bought into the government's rhetoric that someone either can or can't work. In reply I would say that many "old school" disabled people have bought into the government's rhetoric that a person is only integrated into society if they are working.

In summary:

• Don't dismiss my life because I'm living it from my bed.  
• Recognise the social contributions and responsibilities of those not in work. 
• Help ensure they can access the financial support they require to continue being included even after giving up work. 
• Help fight for access for those sick and disabled people who need alternative employment arrangements. 
• Everyone should be careful not to imply that groups of people be automatically assumed unable to work merely on the basis of their diagnosis or impairment, rather than a particular individual based on their specific circumstances.
• Finally, everyone should continue the fight for proper support and access, be it in social care, in leisure or in the workplace. As seen by the Access to Work crisis, unity is needed now more than ever.

I won't take any lectures

I am disabled. I am very ill.
I am also human.
This means that (*gasp*) occasionally I might get things wrong.

I often discuss disability matters online. It turns out that there is a lot I don't know, in particular about other illnesses and other disabilities which I don't personally have.
Being sick and disabled doesn't suddenly make me an expert on every single illness in existence. It doesn't make me aware of every obstacle other disabled people have to face.

When other disabled people tell me that certain disability related ideas, preconceptions or stereotypes I have are wrong and tell me about their own experiences,
I don't tell them that "I don't need lectures from anyone", just because I also happen to be disabled.
I listen.
I learn.

Being disabled isn't a "Get out of Jail Free" card which allows me to discount all other disabled people's opinions and experiences.
At most it should perhaps make me more sympathetic and more willing to listen. Sometimes there are shared experiences which make it easier to relate. That is all.

David Cameron continually uses his own experience of disability to brush off any criticism and shut down any debate of his government's disability or NHS policies.
This is wrong.
His experiences are no more a "Get out of Jail Free" card than my own disability status is.
His policies should be just as open to scrutiny and criticism as those of any other Prime Minister before him. If anything he should be more open to listening, not shutting down debate at every turn. It is time to stop walking on eggshells and address the issues which so desperately need debating.

Disabled people exempt? Nope! He did it again!

You might quite understandably be mistaken in thinking that disabled people came out safe and sound from yesterday's Conservative Conference announcement about the benefit freeze. After all our chancellor announced that disabled people and carers would be supported and disability/carer benefits would not be affected

Wait a minute... This sounds eerily familiar.

Let's see. Blog post: 06 December 2012: "The Autumn Statement and Disability Benefits"

You might quite understandably be mistaken in thinking that disabled people came out quite safe and sound from this year's autumn statement. After all our chancellor announced that although restrictions were going to have to be made to most welfare benefits, disabled people and carers would be supported and disability/carer benefits would not be affected.

Yep. Osborne has done it again. And judging by the press, everyone has fallen for it.

You see, disabled people are NOT exempt from the benefit freeze any more than they were from the 1% cap. ESA, the benefit paid to those fairly found too sick and disabled to work after a gruelling series of tests, is to be included.

People in the WRAG (Work Related Activity Group) will have their benefit frozen entirely. Remember that these are sick and disabled people who have been found to be currently unfit for work. This is clearly problematic in itself as they can be seriously ill and/or permanently disabled, as is explained in this blog post from Ekklesia: "Chancellor's hidden blow to disabled people".

But the Support Group will also be affected to a lesser degree, as the policy will work in exactly the same way as for the 1% uprating cap. I will leave out the full explanation here as it is explained in detail in my previous blog from December 2012.
Put simply, only the "Support Group component" part of the benefit will be exempt, rather than the entire ESA benefit. The "main element", which forms the bulk of the payment (roughly 2/3 of it) will be hit and frozen.
This means that sick and disabled people in the Support Group will see their ESA limited to a tiny growth: one third of inflation.

Overall, roughly 2.5 million sick and disabled people will be directly hit by this policy.


It is bad enough that disabled people continue to be targeted for cuts. What is worse is that this fact is actively and deceptively hidden from MPs, voters and the general public.
It was disgraceful that our chancellor was allowed to get away with telling the House of Commons that "Disability Benefits" would be exempt from the 1% uprating cap when it was clearly not the case.
It is doubly disgraceful that he is now repeating exactly the same lie to voters about the benefit freeze.
The government and the Conservative Party should come clean and admit to both MPs and the public that disabled people ARE affected by these policies.



ADDENDUM: Facts and Figures, How the Freeze would affect disabled people this year.

For a single disabled person over the age of 25:
Both WRAG and Support Group have a main element of £72.40 (for single over 25). This will be affected by the benefit freeze.
The WRAG component (affected by freeze) is £28.75. (Total: £101.15)
The Support component (not affected by freeze) is £35.75.

So for the WRAG, £101.15 is frozen.
And for the Support group, £72.40 would be frozen and £35.75 would not, (ie roughly 2/3 of the total benefit of £108.15 is frozen).

"Here, let me do that", Pride or Impatience?

Picture the scene.
I'm opening the main door to the block of flats.  It is a yale lock.
I ease my electric wheelchair as close to the door as it will go.
I lean up and insert the keys.
I put my arm back down for a few seconds (lifting my arm like that is hard and painful).
I lift my arm again to twist the keys. My other hand is ready on the joystick.
As the key turns I edge the wheelchair forward, pushing the door open, which incidentally wrenches the keys from my hand.
I move the wheelchair forward, retrieve the keys from the lock, and drive onwards to my flat, letting the door bang shut behind me.

This sounds like quite an ordeal and yes, to some extent it is. But I have been doing it for ten years and am quite used to it. On the other hand if I am with a friend then I usually chuck my keys at them and ask them to open the door. No need to hurt my shoulder unnecessarily.

I was less than impressed though when someone walked up behind me when I was half way the process. They became impatient, leaned over and grabbed my keys from the door, saying "Oh, let me do that". When I objected, they pointed out that "they could do it faster than me".
Although true they hadn't really thought things through as we were now left in a slight dilemma: they couldn't get to the door round my wheelchair and I couldn't move without running them over!

This is a typical example of the wrong way of "helping" someone. Just because you think you could do it "better" doesn't mean you should, and certainly not without warning or without consent. In this instance I was perfectly capable of opening the door. This person just got impatient.

Very often disabled people who turn down help are seen as being "proud" or having a "chip on their shoulder". It is not uncommon for non disabled people to get cross when this happens. I have been on the receiving end of abuse for very politely turning down help. (eg "Thanks for the offer but I'm fine at the moment" led to "You're all the same, you lot. Well **** off then.")

But sometimes "help" can be unhelpful.
I have had people get things down from a shelf which I didn't even ask for or want and then get angry when I politely said so. (What am I supposed to do? Buy random items strangers get down off shelves?)
When I could still wobbily walk with a stick, I had people grab me by the arm, which did more harm than good, and occasionally made me fall over.
As a manual wheelchair user, people sometimes unexpectedly grabbed my chair and tried to move or push it. This can be very frightening if done without warning!
As a wheelchair user I have also had people enthusiastically try to open automatic doors for me, or doors I didn't want to go through (including a door to a flight of stairs). But I think I am now digressing into a whole new realm of absurdity!

Moving back to today, there are some tasks which, if I am feeling well enough to do and they don't hurt me, I prefer to do myself. I don't care if I am slow or awkward doing them.
If friends or family are present I am nearly always asked if I'm sure I don't want them to do it for me.
I would stress that this is not them being overprotective. As I have a fluctuating illness there are days when I really would need their help. But if I answer that I am ok to do it, they always respect my reply and leave me to manage. (and should I change my mind half way through, they will also come to the rescue!)
This is absolutely the way it should be.

It wasn't this way from the outset. There was a learning curve on both sides after I became sick and as my disability progressed.
For my part, I had to learn when I needed help and when to ask for it. This was not necessarily a matter of pride, but a matter of relearning what I could and couldn't do.
For their part some of my friends and family over the years had to learn to respect my decision to do things, even if from their point of view it would be "easier" for them to do it.

You see, at the end of the day, I have people do lots of things for me. These are the things I couldn't do even if I tried. I appreciate that help. But to sit back and let people always do the things that I *can* do would seem very wrong and certainly completely unnecessary. Not to mention that should I do this, then I would never do anything at all.

If someone can't accept that and insists on doing something for me anyway, against my wishes, isn't that saying more about them than it is about me? Maybe it is more about embarrassment, or a lack of patience, or even a desire to "look good" on their part than an excess of pride on mine.

Disability Prejudice really does exist

I will never forget Michael Portillo's interview of disabled comedian Francesca Martinez in which she raised the issue of disablism and a hardening of attitudes towards disabled people. He and fellow panellist Andrew Neil, white, middle class, non disabled, both assured her she must be mistaken as new laws have been put into place and besides which neither of them had ever personally encountered prejudice on the grounds of disability and they both think attitudes have improved!

It is this disbelief which is so hard to fight and is so damaging as it prevents any progress being made.
It is fairly easy to find examples. Whenever an article or blog is written by a disabled person about prejudice or discrimination, you will always find comments written by non disabled people disbelieving the author.

Take for instance this excellent post "This is what disability binarism looks like" by "That Crazy Crippled Chick". It decries the ablist meme recently used by George Takei making fun of a wheelchair user who has the temerity to stand up to get alcohol from a shelf.
It describes the prejudice and sometimes even abuse encountered when a disabled person uses a wheelchair but can also stand or walk very short distances. A raft of comments follows by fellow disabled people adding their own experiences and thanking the author for her post.
This does not stop Wendy, against all the evidence and testimonies from all these disabled people, from confidently saying "I don't believe it would occur to any normal person to believe that someone in a wheel chair is faking because they stood for a few moments or moved from their chair to a bus seat."

I think this disbelief has two root causes. The first is that most people are pretty decent and will not act in an overtly malicious way. The second is that a lot of people will not recognise more subtle prejudices and discrimination or simply think disabled people should just "accept it".

As a small and petty example I personally came across, many don't see why the work or club Christmas dinner should be moved to an accessible venue "just for the wheelchair user". Instead they think that the disabled person should "accept that they can't go everywhere".
Now while I fully accept that many places cannot be made wheelchair accessible for practical, historical or even financial reasons, there is no reason not to make sure the venue for the Christmas dinner is wheelchair accessible. Yet for me, this was a yearly and completely unnecessary battle for which I was seen as an annoying trouble maker.

There are many other small passive incidents, often carried out by people who would consider themselves "disability friendly". Taken separately each is fairly small. But add them together day after day and life can sometimes become quite difficult.

Then there are the large nasty incidents. When I recount them I am usually met with disbelief or told I am exaggerating. Close on the heels of this is often a question along the lines of "What had you done?". People are unwilling to believe that non disabled people could act in this way and the fault and responsibility must therefore lie with me.

For instance I sometimes tell people that I have been sworn and spat at simply for being in a wheelchair. The response comes back that either it was my attitude or I was in a dodgy location/time of night.
In one incident I was on a family day out happily being pushed down Weymouth High Street by my Dad. Out of the blue a passing stranger spat on my legs and hissed "Freak" at me before disappearing into the crowd.
When I elaborate and explain, the response usually comes "I can't believe that". So that is it. End of conversation. People would rather believe that I am lying/exaggerating than believe that someone would behave in this manner.

When I was looking for somewhere to live and visiting flats, in separate incidents current residents told me "someone like you can't expect to live somewhere like this" and "we don't want your kind here".
When I did find somewhere to live I faced a battle to get a discrete ramp put in as apparently "it would give the wrong idea".

These are quite extreme incidents, but you can add to these the stares, the nasty comments (eg "People like you shouldn't be let out", "You should have been put down at birth", "If I were you I'd kill myself"), people getting angry when politely asked to let me get past, people running past at till queues and laughing, threats when using disabled parking (even when using a wheelchair) and on and on...

Again, if I tell people about these incidents the reaction is complete disbelief, often followed by "I have never encountered anything like this".

Well, no... As a non disabled person I am not surprised that you have not been stared at, insulted or threatened in the street, spat at or told that you are not wanted. I am not surprised that you have not struggled to get people to ensure you can access the building where meetings or social events are being held.

I am also not surprised that you are unaware of the fact that disabled people often face these battles, because most of the time we simply don't talk about it. This doesn't mean it doesn't happen. The least you can do though is not treat us as as liars, blame us, or dismiss us as exaggerating when we do raise the issue. This in itself is acting in a prejudiced manner, putting the beliefs of non disabled people over the experiences of disabled people.

Finally, even if you would never do the extreme things mentioned in this blog, it is highly possible you very unintentionally do smaller passive things which make life harder or unpleasant for disabled people.

For example, practical obstacles?

• Do you park on the pavement or drop curbs?
• When you put your bin out do you ensure there is enough room for a wheelchair to get past?
• Do you make sure you look at the person you are talking to if they have a hearing impairment?
• Do you inadvertently lean on people's wheelchairs? (highly uncomfortable and annoying)

Or more insidious attitudes?

• Do you complain about how unfair it is that disabled people get "special treatment" or "perks"? (eg parking/benefits/work equipment)
• Do you complain about minor changes put in place for a disabled person? (eg a change of venue)
• Have you ever disbelieved, blamed or dismissed a disabled person when they explain how difficult something is? (eg finding a flat/disabled toilets/accessible social venues/social care)? 
• Do you give well meaning but unsolicited medical/lifestyle advice to disabled people? Do you get upset if they don't follow it?
• Do you get angry/hurt if a disabled person politely refuses your offer of help? (sometimes "help" is more a hindrance than anything else or really is simply not needed)

The vast majority of people do want to do the right thing. But to do that, the first thing that is needed is to listen and accept what we are saying. In my experience many people don't do that as the truth can be very uncomfortable.

Council Tax reduces Disability Care Contributions

Currently a lot of people who had previously been eligible for full Council Tax Benefit are finding themselves hit by Council Tax bills. This includes many people on very low incomes unable to simply "go and get a job", such as carers and disabled people on ESA.

There is however one silver lining for disabled people who are paying social services for their care. This new policy might be cushioned slightly by a reduction in their contribution to their care costs.

Social services are supposed to deduct the amount paid in council tax from what the disabled person pays them towards their care.

Anyone who has had a financial assessment from social services and is paying toward their care should check to see whether council tax has been taken into account. (This will normally be listed under "weekly allowances".)

(Note: see below for comments re Bedroom Tax and PIP.)

Reasoning

The reason behind this can be found in the fine print of the "Fairer Charging Policies for Home Care and other non residential Social Services"

Paragraph 23 states that

Housing costs and Council Tax should be assessed net of any Housing Benefit or
support under the local Council Tax Reduction Scheme.

"Income should be assessed net of any Income Tax and National Insurance contributions payable and net of housing costs and Council Tax."

The thing to remember here is that "Income" for social services is not someone's actual income but the "eligible income", ie the income that is earmarked for care.

For instance to encourage disabled people to move into work, earnings and tax credits do not count as income. On the other hand benefits such as ESA do.
So rather ironically, someone on a salary of £50,000 pa would be said on paper to have an income of £0 per week, whereas someone on ESA has an income of over £100.

Social services cannot take as much money as they like, but must leave the disabled person with "Income support +25%".
They must also take into account essential disability related expenses, although in practise this varies wildly from council to council.
This is the "Fairer Charging Policy".

So essentially social services work out the disabled person's income and subtract

• Any housing costs left over after housing benefit, 
• Any council tax left over after council tax reduction scheme,
• Earnings, tax credits etc
• Benefits which aren't allowed to be used for care (eg mobility DLA)
• Disability expenses

They then take anything left over (if possible) while still leaving the disabled person with money equivalent to "income support +25%".

Note: Care contributions can vary greatly dependent on what disability premiums people are eligible for and how generous councils are when taking into account disability related expenditure.
Many people don't have to pay anything. My own contribution has been as high as £96 per week and as low as £56 per week.
Ironically when I could still work and earned twice as much as I do now I didn't pay a penny!

Very Important Comment regarding Bedroom Tax

Given that social services must take into account housing costs there is a query as to whether this includes the bedroom tax for those affected by it.

The following (paragraph 23) would indicate that it should:

Housing costs and Council Tax should be assessed net of any Housing Benefit or
support under the local Council Tax Reduction Scheme.

It could be argued that the bedroom tax is a housing cost left over after housing benefit has been paid. If so, then the disabled person's calculated "income" is lower and their contribution should either drop by that same amount (if possible) or drop to 0.
For instance if someone was paying £30pw, they would only pay £16.
If someone was paying £9pw, they would now pay £0.

Disclaimer: While I know for certain that some social services do take council tax into account (my own do), I do not know their policy with regards to bedroom tax. However given this guidance it could well be worth a query.

Comment regarding DLA vs. PIP

If social services only provide day care then they can only count mid rate care DLA as income even if the disabled person receives the high rate of DLA.
As PIP doesn't differentiate between night and day care, the new rules state that that social services are justified in counting all of PIP as income.
This means that someone on mid rate DLA or standard PIP who is upgraded to enhanced rate PIP might not see a penny of it. It could be swallowed up in care contributions.
In practise the government is leaving this to the discretion of individual councils. In the long term this means that we can expect to see a postcode lottery as to whether individuals have the entirety of their enhanced PIP award taken as a care contribution.

An Example of a Financial Assessment

A financial assessment might look something like this
Let's consider a hypothetical disabled person receiving a care package worth £140 in direct payments.
They are in the support group of ESA but are able to do 2 hours of permitted work per week for which they receive £20 in earnings.
They also receive DLA high rate mobility and mid rate care.
They receive LHA but have to top up their rent by £8.00 per week.
Social services have recognised disability related expenses with regards to their wheelchair, other specialist equipment and an alarm system in case of falls. However they refuse to take into account dietary requirements, heating and other increased costs.

Weekly Income (including DLA both care and mobility):

• DLA Middle Rate Care £54.45
• DLA Higher Rate Mobility £56.75
• ESA core component  £72.40
• ESA support component  £35.75
• ESA Enhanced disability premium  £15.55
• 2 hours permitted work per week (earnings)  £20

Total = A = £254.90

Weekly Allowances: (disregarded income such as earnings and benefits not earmarked for care, money set aside for disability expenditure, council tax and housing costs, amount required by law to leave to live on)

• DLA Higher Rate Mobility -£56.75
• 2 hours permitted work (earnings)  -£20
• Specialist Equipment -£6.73
• Wheelchair maintenance -£3.85
• Alarm button service  -£3.50
• Council Tax  -£5.76
• Rent Top Up -£8.00
• Weekly Allowance under 60 (= Income support +25%) -£130.31

Total = B = £-234.90

Net Disposable Income = A-B = £20
Cost of Care Package = C =£140 (14 hours of direct payments at £10 per hour)
Care Contribution = the smaller of C or A-B, = £20.

Assisted Dying. The Slippery Slope is here already.

Lord Falconer's Bill on Assisted Dying will be debated this Friday.  This is a bill which evokes strong emotions whichever side you agree with.

For my part I do not support the bill, something I have come under a lot of attack for. Unfortunately these attacks have but strengthened my reasons,  in particular as I am condemned as having no compassion for people such as Tony Nicklinson.

I have a lot of arguments but for the purposes of this post I am going to concentrate on a single aspect: the "slippery slope". As a disabled person this is of particular concern to me.
I have been told very bluntly by strangers in the street "If I were you I'd kill myself". Acquaintances have said that they don't know how I live the way I do and others that they couldn't live if they were "like me".

So it isn't a stretch of the imagination to see that a newly disabled person could easily want to die. It takes time to adjust. But worryingly they would not receive the support they require from many people around them as even subconsciously they would be busy telling them that in their position they'd also rather die. It is a subtle form of pressure.

Of course people reading this are busy thinking "But the bill doesn't apply to disabled people".
Well no, it doesn't.
But the problem is that the "slippery slope" has already started.
Who are the people fronting the argument for assisted dying?
Who are the examples who have convinced people like Lord Carey to change their minds?
Are they terminally ill people who the bill will help?

Well... no. They are disabled people.
We have people like Tony Nicklinson. Or Terry Pratchett.
If people are campaigning and voting on the basis of these examples then in their minds they are already applying assisted dying to other people outside the law: specifically, disabled people.

I wonder what will happen if the bill becomes law but the MPs, Lords and general public then realise that it does not apply to the cases they thought it did.
What will happen when the next Tony Nicklinson comes along and cannot avail himself of the newly passed Assisted Dying Law?

Finally Dignity in Dying repeatedly says this is not about disability but just terminal illness.
So I leave you with the foreword on their website from their patron Professor Antony Grayling:

I believe that decisions about the timing and manner of death belong to the individual as a human right. This is especially relevant in cases of terminal illness, painful or undignified unrelievable illness, exhausting old age, and other circumstances where an individual might wish to make the autonomous decision to end his or her life. I further believe that it is wrong to withhold medical methods of terminating life painlessly and swiftly when an individual requests them on the basis of a rational and clear-minded sustained wish to end his or her life.

As long as disabled people are used to front the argument for Assisted Dying, as long as Dignity in Dying includes old age, chronic illness and "other circumstances" as valid reasons, I will worry about the "slippery slope" and oppose the bill.

EDIT: The bill was not passed. But what is most crucial to my points here are the subsequent remarks made by Lord Falconer. He admitted that the reason for the bill was not the relief of unbearable pain for terminally ill patients, but the indignity of having to rely on other people. In other words the difficulties of being newly disabled.
The fear of relying on other people is hugely exaggerated in non disabled people and is what leads to the comments like "if I were you I'd kill myself". Most disabled people do adapt with the appropriate support. This is what should be concentrated on, just as much and importantly as pain relief, not helping people to die instead.
Lord Falconer's comments are below:

The work that has been done in relation to this shows generally it is not the pain, it is not the fact that you can’t relieve pain – that can be dealt with – it is the sense of people losing their independence and being reliant on other people, and there’s a small number of people who whatever you do would find that an intolerable position to be in.

Dignity in Dying finally admitted on the politics show that they agreed with his remarks, the first time that they stopped hiding behind the pretence that their agenda was purely about the relief of physical end of life suffering.

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

"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."
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".

They also revealed that claimants had been forced to turn to food banks, charities and loans.

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.