Friday, 20 May 2016

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.

Saturday, 30 April 2016

#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.

Monday, 21 March 2016

Iain Duncan Smith Legacy

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 benefitting 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 famously 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.
  • 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 (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: 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 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.
  • 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.
  • 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.

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 themselves.

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

Wednesday, 22 July 2015

Defining sickness in welfare

In recent years with the draconian welfare reforms there has been increasing tension between what has been known as "old school" disability activists and "welfare reform" activists.
One key dispute is that one side refuses to acknowledge that there exist people who are "too sick to work", while the other is undermining the progress made over the past few decades obtaining key rights and support enabling us to enter the workforce.

It is easy to see why the two "sides" are at loggerheads. The stakes are high.
Just recently the government has announced that from 2017, ESA for new disabled people in the WRAG is to be cut by a third, aligning it with JSA. Now do bear in mind that these are people who have been found "unfit for work". While some disabled people within this group may be ready to take on a job, it also includes people who are currently unable to return to work. A further 5000 are unable to work in the longer term yet not "disabled enough" to qualify for the support group. All these people will now be expected to live on subsistence level benefits for a prolonged period of time.
On the other hand the continual campaigning for welfare risks giving out the message that all disabled people are on benefits and cannot work, reinforcing employers' misplaced belief that we make poor prospective employees.

Many people have been making the point that the government is wrong about these reforms because it is treating "sick" people the same as "disabled" people.
I have several issues with this. 
Firstly, "sick" people whose symptoms (impairments) are severe enough to prevent them from working are, by definition, disabled.
Secondly it is very difficult to clearly separate sickness from disability. Some explain that chronic illness causes symptoms such as pain and fatigue which are difficult to manage. But this does not define a chronic illness and can be a feature of many so called "disabilities".
So what is really important?

The key point for me is whether, after all possible support has been put in place and reasonable adjustments have been made, the disabled person’s impairments impact on their ability to do their job.
The problem for many disabled people with chronic illness is that it does. But crucially this is not unique to chronic illness, although it may be more common.

The degree to which it does will affect whether or not it is feasible for someone to be financially independent, or at the very least how difficult or how much.

This is completely individual and not reliant on diagnosis. Furthermore, even given the same impairment, a person’s support network (friends and family), physical support, education and even geographic location can make a difference. 
For instance I was able to continue working for a much longer time because I was able to access the very flexible job of a university researcher (work from home, long term deadlines, well enough paid to go part time). This would be closed off to most people as most people do not have a PhD. There are also not very many of these jobs to go around and location here would likewise make a difference.
So it would have been completely wrong to hold me up as an example and think that everyone with similar impairments could have been working.

However all of this is hard to explain quickly. Thus, because it is so common that impairments arising from chronic illness will invariably impact on the ability to work regardless of reasonable adjustments, we tend to simplify by separating disabled people into "sick" and "healthy". I fear though that this is creating divisions and friction.

In reality everyone should be working towards the same goal which is appropriate support for every disabled individual, regardless of their impairments.
For some this may be temporary financial support while they recover enough to return to work.
For some this may be long term financial support as their impairments impact so much on their ability to work that they cannot reliably carry out work which is financially viable.
For others it will be long term in work support (such as Access to Work). 
For some there needs to be an increase in flexible working practises and what I might call "soft" reasonable adjustments (not just a ramp!) if they are to be able to work again.
For pretty much everyone tackling prejudice, be it with employers, education or the general public is a high priority.
Then there is a wide range of other issues such as accessible accommodation, social care, provision of living aids (including NHS wheelchairs), accessible transport, disability in healthcare and probably much else I'm forgetting.

At the moment much of this is going backwards rather than forwards, be it fears for independent living through social care cuts, the abolition of the ILF and cuts to DLA, reduction in support for work through changes to Access to Work and again, cuts to DLA, a possible reduction in future accessible accommodation through lessening of building regulations, and cuts to ESA.

Monday, 22 June 2015

Higher PIP percentages is NOT a good thing

The latest government spin machine is in action, trying to make us think that PIP is much better than DLA at supporting disabled people.
This seems hard to believe when we know that it was introduced with an original aim of reducing expenditure by 20% (pdf) and 500,000 fewer disabled people would be eligible for the new benefit. By January 2013 this was revised to 27% savings and a 28% decrease in the caseload (same pdf), ie 607,000 fewer eligible disabled people by May 2018.

So how is the government doing it without lying?

Well in response to this article which claims that at least 450 carers in Scotland will lose £3000 due to the change, the DWP says:
“The fact is a higher proportion of Personal Independence Payments claimants receive the highest rate, so entitling their carer to Carer’s Allowance, than the proportion of Disability Living Allowance claimants who do.”
Similarly, during the course of today's welfare debate, the DWP twitter account posted the following:
Wow! Sounds great! Why are we complaining?!

Well no. It isn't quite so great. This is for the most part a direct consequence of the fact that they have made the qualifying criteria much harsher and far fewer people will qualify. But they manage to make it sound like a good thing. I applaud their ingenuity!

For instance the number of people projected to receive the highest rates of PIP is pretty much unchanged by May 2018 compared to if we had retained DLA.
357,000 will receive the highest rates of PIP compared to 354,000 on DLA.
The reason the ratios are so different is that the total caseload is different and will drop dramatically under PIP.
Only an estimated 1,575,000 claimants will qualify for PIP whereas 2,182,000 would have qualified for DLA.
Hence the DWP's proud statement that under PIP 22% will receive the highest levels of support as opposed to 16% under DLA.
This is absolutely true. However the only reason it is, is that over 600,000 disabled people will have lost their benefit! This is hardly something to be pleased about!

Very clever spin. I take my hat off to you DWP...

P.S. The statement is also not true when it comes to mobility, almost certainly due to the harshness of the "20 metre rule". In fact not only does the total number of claimants go down significantly, but the proportion goes down slightly as well.

602,000 disabled people are expected to qualify for enhanced mobility under PIP.
A full 1,030,000 would have qualified for high rate mobility under DLA.
In this case, the statement that a higher proportion receive enhanced rate is false.
An estimated 48.7% of mobility claimants will receive the higher rate under PIP, compared to 52.6% under DLA.
It should also be noted that 21.6% of the total PIP caseload is ineligible for any mobility support whatsoever, as opposed to just 10.2% under DLA.

Tuesday, 2 June 2015

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 researched and wrote what became known as the Spartacus Report. While others helped and others were in charge of organising the superb campaign, I was the main author.
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 tried 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.

Sunday, 10 May 2015

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.