Archive for the ‘ disability ’ Category

Chronic Pain & the PIP Mobility Component

I see a lot of posts and people talking about people who “won’t get PIP” over the course of a day. One example often used is the person who can drag themselves with lots of pain & exhaustion for a few metres on a good day (however rare they are) before needing to use a wheelchair who will lose their higher rate DLA.

Messages like that cause a lot of worry for many people who are reading them. They are scary. They make me worry I’ve missed something when I read them. Over the last month I’ve been told by plenty of people that they believe conditions that often fluctuate or allow for limited mobility before needing to use a wheelchair like arthritis, EDS and fibromyalgia won’t qualify for the higher rate PIP mobility component. Having just read the new DWP guidance I really don’t believe that is true.

Hopefully this little bit of news can go a little way to easing some of those worries. When “safely, reliably & in a timely manner” are taken into account suddenly it becomes quite clear that the criteria isn’t meant to be that harsh.

Example 1

Phil has long term problems with rheumatoid arthritis and has very limited walking abilities. He needs a wheelchair for more than 50% of the days when outdoors and can only walk a few metres before being in pain and discomfort. He is assessed as 

 “Can move or stand 1m but not more than 20m, either aided or unaided”

 and scores 12 points on the assessment. He is therefore awarded enhanced rate mobility component.

I am well aware that everything depends on how this guidance is used by assessors but even so, this example will be a powerful tool when appealing decisions. This isn’t a defence of the abolition of DLA or the founding principles of PIP. Just an attempt to reassure some of the very distressed people I’ve spoken to.

Shadow Reporting – First Steps

After writing this post I started looking into who was writing the UK’s Shadow Report(s) for the UK’s initial 2011 ODI (Office of Disability Issues) report to the UN.

As far as I could tell there was one being co-coordinated by the UK Disability Rights Council under the banner of UK Disability Rights Watch (UKDRW) and I’ve not been able to find that any others are being produced.  After having a chat with the super folks from Disabled People Against the Cuts we decided that it would be a good thing to form a working group to look at producing another Shadow Report.

At the moment there is a small group of us (unpaid, unfunded, volunteers) going through everything that needs to be done and trying to get our heads around the process. Once we have a good idea about what exactly it is we need we are hoping to open up the process so that lots of people can get involved.

Below the cut is a little more about what we are doing for those who are interested:

What are we trying to achieve?

The UK ratified the UN Convention on the Rights of People with Disabilities (CRPD) in 2009. This means the Government now has certain obligations with respect to disabled people;

  • To work to make the rights outline in the CRPD a reality in disabled peoples lives
  • Ensure disabled people have protection from all forms of discrimination including failure to make reasonable adjustments
  • Pass new laws and make policies where appropriate
  • Abolish or change laws and practices that discriminate against disabled people
  • Take account of disabled peoples’ human rights in its practices and programmes in advance, not retroactively (sometimes called ‘mainstreaming’)
  • Collect and disseminate data and statistics in accordance with article 33 (this is to act as a qualitative measure of progress and to aid in improved policy development)
  • Ensure public authorities comply with the convention
  • To report to the UN Disability Committee in Geneva every few years to update them on it’s progress and any problem areas. The first report was done in 2011 and the next is due in 2015, then one is due every 4 years.

The reports to the UN Disability Committee are written by the Office for Disability Issues (ODI) which is part of the Department for Work and Pensions (DWP). As I am sure you can imagine these reports can be skewed to show the Government in a very positive light. The UN Disability Committee recognises this risk and to counter it they invite groups to produce “Shadow Reports”. These Shadow Reports are supposed to show how disabled people view the changes implemented by the government, to highlight problem areas, to celebrate successes, make suggestions for improvement and to help the UN Disability Committee scrutinise the government reports.

We don’t agree with the 2011 report and we hope that by putting together a Shadow Report we can use the UN Disability Committee to hold the UK government to account over the way it treats it’s disabled citizens.  This process won’t be a short one, it may be a few years yet until the UN Disability Committee gets around to reading the UK’s 2011 report but I hope that won’t phase us.

What can it achieve?

In the past strong condemnation from the UN Committees has forced the Government to change laws, policies and practices. The UK has a strong interest in looking good internationally and as such international pressure can really help to strengthen our campaigning, legal challenges*, complaints, lobbying and activism.

* If you want to bring a legal challenge against a violation it will have to be under the Human Rights Act or the Equality Act. You can’t bring a legal case under the CRPD, but you can use it to strengthen your case.

How I can I help?

The report needs to show the reality of life in the UK for it’s disabled citizens. To do that in a clear manner that will stand up to scrutiny we need to collect as much relevant information as we can. You can help primarily by helping us gather information or suggesting themes we should search for information about. You can post up suggestions or links to papers/articles in the comments section below or tweet me on twitter if you’d like.

With regards to the Shadow Report the UN Disability Committee is only interested in violations of the CRPD, so we need to make sure that the data we gather ties into one or more of the specific articles of the CRPD. Once the data is collected we will need to sift through it to work out which articles of the CRPD/ Thematic Areas (e.g. Welfare Reform or Access) they correlate to.

Once that is done we will need to compile the data into a report which will need to be proof read by interested parties before being sent off.

What do we need to collect?

Statistics – Statistics can be used to clearly highlight disadvantage and discrimination (e.g. in employment, post 16 education, hate crime) which makes them invaluable. We need to be able to cite where all our statistics come from so we will need to find sources which can relate to the CRPD. These statistics also need to be as recent and up to date as possible from reputable sources. The Government has a duty to collect data about the areas covered by the CRPD, so any areas where data is missing (e.g. lack of cumulative impact assessments, lack of data on violence against disabled women) is also of interest.

Case Studies – Statistics often don’t really show the effect of disadvantage and discrimination on groups and individuals This is where case studies can become very useful. We need to collect any array of case studies from the media, groups and individuals to highlight the effects of the UK’s disability policies on a local, regional & national scale.

What Is "Intersectional" Anyway?

I imagine that if you are reading this you identify either as a feminist, a disabled person* or as an ally of feminists and/or disabled people and you might have heard the term “intersectional” or “intersectionality” used when talking about peoples rights. It might sound a bit academic, but the principle is fairly simple and extremely important so I’m going to attempt to explain it in this post.

In a nutshell: 
People are oppressed for a variety of different reasons such as disability, gender, culture, sexuality & race. There is a lot of overlap between these oppressions; we call the areas of overlap intersections. Someone who campaigns for disabled peoples’ rights in an intersectional way is aware that there are lots of disabled people who are not heterosexual, cisgendered, white men and that they will probably be living with more than one kind of oppression. Many people, myself included, believe that it is very important to remember intersecting oppressions to make sure that our campaigning is as inclusive of everybody’s needs as possible.

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A very simple venn diagram showing some intersecting circles of oppression including gender, disability, sexuality, nationality & race.
In a bit more detail:

If you are a disabled person or an ally to disabled people I assume you will be no stranger to the idea that our society is, at it’s core, disablist. The majority of people in positions of power are non-disabled and this is in a large part because disabled people are still routinely silenced, dismissed, ignored or refused access to the necessary tools to be able to communicate meaningfully. They are frequently excluded from politics, from decision making and from society as a whole because of damaging and deep seated idea’s about what disability is or means. It results in a large gap in pay, employment prospects, education, access to health care and access to independent living between disabled and non-disabled people. The power gap between disabled and non-disabled people is frequently abused and results in disability related hate-crime, abuse & harassment whilst the successful prosecution of such crimes remains woefully low.

If you are a feminist or an ally to feminists then I assume you will be no stranger to the concept that our society is still very sexist. The majority of people in positions of power are male and they decide what media we consume, what policies we follow and how our laws are applied. Sexist stereotypes brand men as strong, powerful, aggressive, logical and confident and women as weak, passive, caring, guided by emotion and small and they have damaging effects on men & women alike who do not fit those very constraining moulds. There is a large gap in pay, caring expectations, attainment and employment & educational choices between women and men. The power gap between men and women is frequently abused and results in statistics like 1 in 4 women being domestically abused in their lifetime, 1 in 5 women being sexually assaulted or stalked whilst the chances of getting these crimes taken to court is still low.

I would hope that it doesn’t come as a shock when I now say that as well as people being discriminated against because of their gender/gender identity (or perceived gender) or because they are disabled (or perceived to be disabled) are also discriminated against in remarkably similar ways because of their race (or perceived race), age (or perceived age), sexuality (or perceived sexuality) and beliefs (or perceived beliefs).

We can also see that where there is an overlap of identities (or an intersection of identities) people face extra discrimination. I will take the example of disabled women quickly to illustrate this point. Disabled men get paid on average 11% less than similarly qualified non-disabled men doing the same job. Disabled women get paid 22% less than disabled men when doing the same job**. They effectively take one pay cut because of disability, then another because of gender. Disabled women are more than twice as likely to experience domestic/intimate abuse than non-disabled women.

When human/civil rights campaigners talk about taking an intersectional approach they are talking about remembering that there are other forms of oppression active and that these need to be taken into account. It is important to remember that when talking about women’s rights that many of those women will also be one or more of the following; disabled, working-class, black or minority ethnic (BME), lesbian, gay, bisexual, trans*, intersex, queer (LGBTIQ) and/or hold cultural & religious beliefs that differ to the ‘norm’. When women’s rights campaigning ignores those areas it is complicit in further marginalising these women on the basis of their other characteristics.

Intersectionality is not about who wins the “most oppressed” award, nor is it about derailing or silencing conversations. The joy of intersectionality is that it raises questions for everyone and widens the scope of conversation, debate and dialogue. It is a tool which can be used to improve campaigns, make for a far more inclusive environment and to remind people not to assume that everyone has an equal and shared background. I don’t know about you but I personally don’t want to see advances in feminism that set LGBTIQ people back in their fight for equality and nor do I want to see advances in disability rights that ignore the reality of sexism that the people it represents experience.

I’m going to stop there. Hopefully that has given a basic introduction to the concept and hopefully it will have made some sense.

* In this post when I talk about disability I am talking about people who have an impairment and are disabled by a society that oppresses them as a result. My definition of disability includes long term sickness/illness and conditions like HIV.
** See Longhi,S. and Platt, L. 2008, Pay and equalities areas. Research report 9. Equality and Human Rights Commission. Also covers pay gaps with regards to other protected characteristics.

Working Together Under The UN CRPD (Convention on the Rights of People with Disabilities)

I went to Manchester yesterday and attended a seminar run by the Equality & Human Rights Commission (EHRC) all about the United Nations Convention on the Rights of People with Disabilities (UN CRPD, or CRPD). It was really enlightening and taught me exactly how the CRPD could and couldn’t be used. I have decided to start with this post which aims to briefly summarise the basics of what I discovered. Hopefully I can get some more detailed posts written later to expand on everything.

1. What the CRPD is:

Certain groups, like children, women & disabled people are seen to face greater barriers when ensuring their human rights are met globally. A number of conventions have been drawn up to supplement the basic declaration of Universal Human Rights written by Eleanor Roosevelt in 1948; one of these is the CRPD. There are no “new rights” or “different rights” for disabled people included. The CRPD simply sets new standards and contextualises how to ensure equality for disabled people all over the world.

It is based on the social model of disability which suggests disability is the result of people with impairments being discriminated against by socially constructed barriers, be they direct or indirect in nature.

The UK signed the CRPD in 2006 (which means the UK said it agreed with the convention) then in 2009 it ratified it (which means it made a commitment to implementing it). This places the following obligations on the Government (which they coordinate through the Office for Disability Issues, ODI) ;

  • Ensure disabled people have protection from all forms of discrimination including failure to make reasonable adjustments
  • Pass new laws and make policies where appropriate
  • Abolish or change laws and practices that discriminate against disabled people
  • Take account of disabled peoples’ human rights in its practices and programmes in advance, not retroactively (sometimes called ‘mainstreaming’)
  • Collect and disseminate data and statistics in accordance with article 33 (this is to act as a qualitative measure of progress and to aid in improved policy development)
  • Ensure public authorities comply with the convention
  • To report to the UN Disability Committee in Geneva every few years to update them on it’s progress and any problem areas. The first report was done in 2011 (read it here) and the next is due in 2015, then one is due every 4 years.

2. What it is not:

It is not law. If someone breaches the CRPD then they haven’t broken a law. Fortunately there are many laws in the UK that cover the same things as the CRPD so that there can be legal recourse. For example if someone abuses a disabled person they would not be arrested for violating article 16, but they could be arrested under the Equalities Act and/or for other crimes such as harassment/criminal damage/causing bodily harm. The prosecution could then be strengthened by it also being a violation of the CRPD as judges are allowed to consider the CRPD when ruling in cases.

3. How it can be used to improve the rights of disabled people in the UK:

  • When successful prosecutions are strengthened by the CRPD it sets legal precedent, or case law. The more case law is built up around the CRPD the harder it becomes for people to ignore it.
  • The government, public bodies and local authorities all have committed to the standards in the CRPD which means that they can be used to point out to organisations where they are falling short on equality commitments.
  • As well as applying pressure on the government internally (via MPs, voting, national media, protests etc..) we can use it to apply pressure on the government externally (via suggestions & pressure or even condemnation from the UN). The government has to report to the UN on its CRDP progress every 4 years, but as you can imagine they often paint an unduly positive picture of their work. We can counter this by preparing Shadow Reports to feed back to the UN. 
To stop this post becoming a monster I’ve put up another post with details of the rights of disabled people here. A fun (and by fun I mean very depressing) game you can play is counting all the ways the Welfare Reform Bill and cuts to the provision of services for disabled people violates the CRPD the UK ratified less than 5 years ago!

Twitter & #HeardWhilstDisabled

It’s a Monday and like millions across the world I woke up feeling pretty naff. Anyhow, on top of that fate consipred to get me thinking about some of the hurtful/rude/insensitive people had said to me with regards to my disablity.

As any self respecting person in a rubbish mood on a Monday would, I decided that it was time to vent.

I then went on to post some of the stuff that was on my mind:

Before long a few others joined in and in half an hour it had started to spread. I went out to an appointment and by lunch time tweets were flying from lots of other disabled people who were also using the hashtag to vent and/or spread awareness that this stuff really happens to many of us all the time. I understand that many felt excluded by the use of the word “heard” in the hashtag & I can only apologise. My intent was to vent a few personal annecdotes originally, there was no planning involved, had there been I would have chosen a more inclusive tag like #experiencedwhiledisabled for example. I hope you can understand that the slight was not intentional. I’d like to share a few of the stories people shared now;

There are so very many more too, all warrant reading. I’ve just got in to discover that whilst I was out this happened;

I’m so happy that people had the chance to vent and share their stories with so many others. I’m also still pretty shocked that a Monday morning moan could turn into something so big.

We found our way into a few news stories too! One at the Guardian & one at the Independent

A Response To Philip Hensher’s Article

Dear Philip,

I read your article (Some people on disability benefits are fit to work) yesterday and I saw the backlash on twitter. I have some thoughts on it and I wanted to share them, as a disabled woman with both physical and mental health problems who has been through the wringer with the DWP and it’s WCA process plenty of times.
I read every word and upon finishing was struck by two things. Firstly, that whilst apparently arguing for  some form continuing assessments of sick & disabled benefit claimants you were against the Work Capability Assessment in it’s current form. That is something I applaud. I too am against the current WCA’s. I’m very glad to hear you speaking out against them and I would love more voices to join the throng. 
The second is that whilst suggesting that there is some need for assessment you (I assume accidentally) propped up some rather pernicious myths about people claiming disability benefits. I hope you can understand that for many of the people that will have been attracted to read your article that might have made pretty painful reading. I will just go through some of those myths now as I assume you might not be well versed with them.
That there is a high percentage of people claiming these benefits that shouldn’t be.
You devote about 50% of your article to talking about people who defraud the system. I would argue that this is providing false balance to these stories. The DWP’s own statistics show that less than 1% of claims are fraudulent. You are not the first person to cover the issue in this manner (either to make it seem more contentious or exciting, or simply because you believed it to be true because of the media coverage you have ingested) and nor will you be that last. The problem is that many of us are suffering, I personally believe, in a huge part to the false balance given to these stories.
As a wheelchair user I have noticed the abuse I receive in the street has changed over the last few years. It’s no longer about how I look (funny, disgusting) or about how I might be “catching”. Instead it is about how I am probably a lazy, workshy, scrounger and a benefit fraud. People feel free to approach me in car parks and ask if I really need the blue badge parking space or if I just use the chair to get a free car. It’s painful and it’s part of my day-to-day existence. It’s part of many other peoples too. There has been a huge rise in disability hate crime over the last few years. I assume from what you have written it is not part of your everyday life, but I don’t know. When people for whom this is their day-to-day reality read articles like yours they often have an (understandable) emotional response which can vary from sadness to anger. I became pretty despondent personally as what I thought was a very promising piece propped up the “scrounger rhetoric” as many of us call it. I hope you can see that when people in the media spend as much, if not more time talking about scroungers the effects on the vast majority of disabled people 
That mental health conditions are not as debilitating as physical health ones.
The way (or tone) you take when talking about people who claim benefits for mental health conditions such as anxiety and depression seems pretty sceptical to say the least. This reader at least felt like you were either ignorant of the how severe these conditions need to be to claim ESA or you were suggesting they weren’t really very debilitating. As I hope you are aware many people who live with mental health conditions are routinely told to “snap out of it” or are treated as if it is something they could just “get over it” with the right motivation and the way they were talked about in your article felt like you too were propping up this myth. I know that many people who responded angrily to reading your article were most hurt by this sentiment.
But, I can’t talk about other people. that’s not my place and those aren’t my stories. I can however talk to you about myself. I have a mental health condition, Post Traumatic Stress Disorder in fact. I also have a chronic pain condition stemming from a lot of damage to my abdomen and the nerves within. I have quite a bit of personal experience of dealing with both kinds of health issues. Thanks to the PTSD I can’t manage 15 mins in a whole host of seemingly innocuous environments (for example; being near petrol or the sound of breaking glass) because they trigger flashbacks during which I relive experiences that were so horrific the first time around they left me with a mental health disorder. I would often describe this, to those I would really rather not have a huge conversation about this stuff with as panic. In my experience panic can be as debilitating, if not more so than severe physical pain at times. Panic, fear, terror, fight or flight responses, what ever you want to call it is extremely unpleasant and can govern a persons life. We need to remember that when we talk of claiming ESA for anxiety or panic disorders we are not talking about people who experience panic on a once a month basis, if we were then they would not be getting ESA. We are talking about people who often experience it multiple times daily to the point it may stop them talking to strangers, leaving the house or wearing certain colours. It will also often have physical manifestations such as uncontrolled shaking, nausea, pain & high blood pressure. Someone who can cycle for over 15mins but can’t talk to people without crying and shaking in fear isn’t very likely to be employed. All because it is a mental health disorder does not mean it’s any less likely to be disabling than a physical health problem. 
That some conditions are more worthy than others
You mention obesity in your article and say that “The only possible purpose for public expenditure there is to help them back into fitness for work.” I feel the same way reading this I did when the Daily Mail published it’s bogus article about the parents of lots of children with ADHD being given free BMWs. There is a gulf of misunderstanding when it comes to these statistics which list which disorders people have and what they are claiming. Many people claiming ESA or DLA have more than one condition but the DWP only bothers to record the first condition listed on it’s forms. So, for example someone with ADHD, Obesity & EDS will only be recorded as claiming one of those conditions, possibly ADHD or obesity. It’s hardly ever as simple as black and white as it looks.
I also was disappointed that you used your platform to in many ways make it seem as if obesity (to a disabling enough level one would be able to claim ESA) is a lifestyle choice/moral failing and that people shouldn’t be supported. I hope you realise that obesity is often a side effect of many medications (steroids, beta blockers, anti-seizure medications etc…) as well as medical conditions  either directly (such as PCOS, Cushings & Prader-Willi syndromes) or indirectly by limiting activity or changing diet (such as arthritis & drepression). Even forgetting all of this I personally believe that if someone can’t mobilise, breathe, manage continence of anything else similar then regardless of the reason behind it those people deserve support. If we start deciding what conditions are worthy of being disabling rather than looking at the effects of conditions upon individuals we risk leaving a lot of vulnerable people behind.
I believe that you could have written the same article, which I believe can be summed up as “The WCAs as they stand need to stop but that we should talk about what will replace them that will be fair to everyone”, without using the afore mentioned problematic dialogue.
I’m going to leave it there, because I’m tired of writing and I’m sure you are growing tired of reading criticism. I do really respect you for having tried to take a stand against the WCA’s and I’d love to see you continue to write about these issues in the future but I’d also like it if you could try and consider how you talk about sickness, mental health problems & disability when you do so.  
Warm Regards

[Edited to correct typo]

Imaginary Wheelchairs & Other ESA Changes

As you may or may not know on the 28th January they are making some more changes to ESA assessments. Both of the proposed changes are dangerous and counter productive (unless you want to produce a super-flawed, biased and unfair system). They go a little something like this;

Imaginary Aids, Adaptations & Treatments

In a nutshell, they will be changing the system so that if a person could do something with appropriate aids/adaptations or has a condition that sometimes benefits from a specific treatment (even if they don’t have access to them) they can be judged as if they do. They also do not have to ask your opinion about it.

An example would be; a person who attends a meeting and explains that because of a condition, let’s choose chronic pain, they cannot walk 50m. The assessor decides that they think that with a wheelchair they could do it. The assessor then says nothing to the claimant and notes it on the assessment form. The person is then found fit for work or placed in the WRAG rather than the support group on the basis of an imaginary wheelchair. Of course, they don’t then give the person access to a wheelchair. They just seem to expect them to magic one out of thin air. Bitter experience has taught me that the NHS doesn’t give wheelchairs to a lot of people who would benefit from them. It’s also taught me that getting a NHS wheelchair doesn’t mean you can use it. If your home is at the bottom of a hill, has steps in and out, doesn’t have wide enough halls or door ways or any other number of issues are at play the chair is just a (often) ugly reminder that you can’t get out. Getting your home adapted for a wheelchair is very difficult at the best of times, heaven forbid you privately rent and your landlord doesn’t want you to ramp the front garden. All this doesn’t take into account our imaginary claimants ability to propel a wheelchair either. It would be laughable if it wasn’t a real threat.

The same goes for treatments. Did you turn down CBT for Fibromyalgia? If they think it would have made it better then they can “imagine” how you may have been if you’d had it and assess you accordingly.

Ignoring the Intersections Between Physical & Mental Health

The ESA50 (the pink form claimants get sent asking them to detail their conditions) is split into two sections; Part 1 (‘Physical Disabilities’) and Part 2 (‘Mental, cognitive and intellectual function assessment’). At the moment people who experience problems such as poor bladder control because of a mental or cognitive disability will explain that in part 1. Now they are proposing to make it so that only the effects of “a specific bodily disease or disablement” will be considered in part 1, whilst Part 2 will only consider the effects of “a specific mental illness or disablement”.

This is a massive issue as many conditions have both mental/cognitive and physical components. It’s also problematic because many physical health problems exacerbate mental health conditions and vice-a-versa. 

How to help


Sue Marsh over at Diary of a Benefit Scrounger has issued a rallying cry and offers some great advice about what you can do to help fight these changes (link to her post). 

You can email your MP by going to this webpage and searching for them by your constituency and send them a link to this report. If you don’t want to email them then you can tweet them with a link to the report saying something like “Dear [MP name] please read this report about damaging changes to ESA http://www.ekklesia.co.uk/ESAbriefing  #esaSOS”.

You can try to spread the word by tweeting, emailing & facebooking others (friends, family, reporters, councillors , and asking them to spread the report too.

Urgent PIP Action Needed – Draft Regulations

The government has announced it’s draft PIP regulations now all of the consultations have closed. Two of the biggest issues with these draft regulations are as follows;

  • Changing the criteria for enhanced mobility component of PIP for those with physical difficulties getting around – in a nutshell the Government has now decided that anyone who can walk more than 20 metres (it was initially supposed to be 50m) does not reach the threshold for the enhanced mobility component (unless they have difficulty planning and following a journey). The DWP itself admits that 42% fewer claimants will be awarded the enhanced mobility component that would be the case if DLA continued. We estimate about 200 people in each constituency will be affected by the loss of their car, Wheelchair Accessible Vehicle or wheelchair. That’s over 100,000 people losing out on access to the crucial Motability scheme. Higher rate DLA (which is being replaced with the enhanced mobility component) is also a gateway to many other benefits such as disabled persons travel cards  taxi-schemes, bus passes and fast-track access to the blue badge scheme. It has been hinted that the enhanced mobility will take over where Higher rate DLA leaves off. So the impact of this is even more than just the loss of monthly income & cars/wheelchairs.
  • Excluding the qualification that claimants must be able to perform an activity ‘safely, reliably, repeatedly and in a timely manner’ from the regulations themselves. Campaigners, myself included, fear is that if these qualifiers are not included in the regulations, they will not be legally enforceable and tribunals may not be able to apply them on appeal. The Spartacus Campaign Group hope to get some legal advice on this as quickly as possible. If you combine this with the change above it means that theoretically someone who could walk a maximum of 25m once a month could have their mobility competent removed. A disaster for anyone with even a vaguely fluctuating condition.
We have very little time to persuade MP’s that this is not acceptable. Please do what you can.

Hardest Hit have put a ‘contact your MP’ tool on their website and the Spartacus Campaign Group have provided information and a link to this and other resources at http://wearespartacus.org.uk/pip-emergency-act-now/

A letter/email often works best but if you don’t feel up to it there are other ways you can get in contact; you can tweet your MP or post on their facebook page if they have one to spread the word.

Fibrogirl has provided some handy graphics to help illustarate the 20m rule to MPs on her blog such as the following;

WOW Petition Launch

Today at 8pm the fabulous comedienne, writer and vocal supporter of the disability rights movement Francesca Martinez launched the crowd sourced WOW Petition designed to help resist the ‘War On Welfare’. It is a UK government e-petition which ideally needs to get over 100,000 signatures. It’s going to need publicising and shouting about but I’m sure as a community we can do it. Heck, it’s been live for two and a half hours and it’s already been trending on twitter and received over 1,400 signatures!

It calls for: 

A Cumulative Impact Assessment of all cuts and changes affecting sick & disabled people, their families and carers, and a free vote on repeal of the Welfare Reform Act.
An immediate end to the Work Capability Assessment, as voted for by the British Medical Association.
 

Consultation between the Depts of Health & Education to improve support into work for sick & disabled people, and an end to forced work under threat of sanctions for people on disability benefits.

An Independent, Committee-Based Inquiry into Welfare Reform, covering but not limited to: (1) Care home admission rises, daycare centres, access to education for people with learning difficulties, universal mental health treatments, Remploy closures; (2) DWP media links, the ATOS contract, IT implementation of Universal Credit; (3) Human rights abuses against disabled people, excess claimant deaths & the disregard of medical evidence in decision making by ATOS, DWP & the Tribunal Service.

If you want to sign it click here. Once you have signed it then you will need to remember to check your inbox and click the confirmation email to make it count.

Language Check – Assisted Dying Campaigners

I have this conversation a lot so I want to get it written down for ease of referencing back to later. If you are not the kind of person who appreciates someone suggesting that you may have been unintentionally offensive to sick/disabled people and explaining why then I wouldn’t bother to read the rest; enjoy the rest of your day! If on the other hand you want to read on so that you can look for ways of improving your argument and/or being more intersectional, then you are welcome to read my thoughts on the issue.

Assisted dying is a issue many people feel pretty strongly about and is a topic that regularly raises it’s head in our society. It’s also one that has many overlaps with the world of sickness & disability; I don’t think I need to explain why. Unfortunately a lot of the language used to talk about assisted dying is dripping with non-sick/disabled privilege and thinly veiled disablism (ableism for many of my non-British readers). Now, I am sure that the vast majority of assisted dying campaigners are not being intentionally disablist. I’m sure many probably feel quite shocked to hear that suggestion, given how hard they fight for the rights of terminally ill people. Still, all because one doesn’t intend to appear unsympathetic to a group doesn’t mean they are incapable of being hurtful or offensive by mistake.

There is a myth that living with many of the trappings of disability is automatically miserable. Pain, discomfort, differently functioning body parts, loss of control of body parts and/or the need for assistance are spoken about as a fate worse than death. Something that needs to either be overcome or hidden away. Very rarely do we hear people in the media talking about just living with it; how even though some things are different in many ways they are also very similar.

There is a real risk that the language used by assisted dying campaigners can fall into the trap of re-enforcing this unhelpful stereotype. When campaigners talk about “…the indignity of needing care…” or “…the misery of living in pain…” they perpetuate the idea that living with pain or needing assistance is somehow always unbearable. The message I hear, and that many others who live with impairments that cause pain, confusion, sensory loss and/or require extra assistance hear, is an intensely negative one: that, to be blunt, death is better than having to ask your partner to dress you or having to take a cocktail of drugs.

Of course one can’t ignore that for very many people (especially the currently non-disabled/ able-bodied) the thought of living in pain or needing care does seem like a fate worse than death. I can’t be alone in having people comment (intending to be somehow supportive) on how they would have killed themselves, or wouldn’t be able to live, if they had my condition. This is something I could do without hearing to be honest. When I am having a bad day I don’t need those messages about how no one would blame me if I killed myself haunting me. I try to explain, often to disbelieving folk, that the reality of the situation is often extremely different. Our bodies are amazing things and we all learn to cope and adapt to our new circumstances. What seemed so scary before suddenly becomes everyday. What makes this process hard is continual messages from society that our illness, disability or impairment is either something that we should be able to completely overcome so that we can live “like normal people” or is so bad that we should give up. It is harder to live with a new (or old) condition when we are told that care is something that causes loved ones physical and mental distress, is something we are undeserving of, or is something we have learnt to fear because of it’s chequered history of abuses.

I guess what I’m trying to say is that impairments and disabilities are things that we can often live with and in themselves shouldn’t be treated as terrifying things. The things that we need to look at are the reasons people are scared of needing care, scared of having to depend on others, scared of not being able to work, scared of needing equipment and automatically scared of ill health & disability.

Now, I’m not against assisted dying as a concept. I feel that people who wish to choose their time of death and are not currently being coerced by societal pressures, mental health problems or others should be able to do so. I am not trying to suggest that all conditions are things people should be forced to live with, I can only speak of my experience of sickness & disability and that of talking about these matters with other sick & disabled people. I am also not trying to be a mouthpiece for all sick & disabled people, I am sure there are many out there that don’t agree with my take on things. All I am trying to do is suggest that their might be a better way of doing things that does not contribute to harmful stereotypes about disability. I want to challenge people who simply haven’t thought about, or don’t think about, the impact which broad sweeping statements about ill health, degenerative conditions and dependency can have on those that hear it; specifically the effect it has on those who live with such conditions daily.

So, I respectfully ask that those engaged in the debate, particularly those pro-assisted dying, think before they speak and consider the impact of their words on the chronically sick & disabled people who are listening.

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