Category Archives: activism

activism, empowerment, human rights, politics, women

“Michal Serzycki” Data Protection Award 2021

It is a privilege to be a joint-recipient in the fourth year of the “Michal Serzycki” Data Protection Award, and I thank the Data Protection Authority in Poland (UODO) for the recognition of work for the benefit of promoting data protection values and the right to privacy.

I appreciate the award in particular as the founder of an NGO, and the indirect acknowledgement of the value of NGOs to be able to contribute to public policy, including openness towards international perspectives, standards, the importance of working together, and our role in holding the actions of state authorities and power to account, under the rule of law.

The award is shared with Mrs Barbara Gradkowska, Director of the Special School and Educational Center in Zamość, whose work in Poland has been central to the initiative, Your Data — Your Concern, an educational Poland-wide programme for schools that is supported and recognized by the UODO. It offers support to teachers in vocational training centres, primary, middle and high schools related to personal data protection and the right to privacy in education.

And it is also shared with Mr Maciej Gawronski, Polish legal advisor and authority in data protection, information technology, cloud computing, cybersecurity, intellectual property and business law.

The UODO has long been a proactive advocate in the schools’ sector in Poland for the protection of children’s data rights, including recent enforcement after finding the processing of children’s biometric data using fingerprint readers unlawful, when using a school canteen and ensuring destruction of pupil data obtained unlawfully.

In the rush to remote learning in 2020 in response to school closures in COVID-19, the UODO warmly received our collective international call for action, a letter in which over thirty organisations worldwide called on policy makers, data protection authorities and technology providers, to take action, and encouraged international collaboration to protect children around the world during the rapid adoption of digital educational technologies (“edTech”). The UODO issued statements and a guide on school IT security and data protection.

In September 2020, I worked with their Data Protection Office at a distance, in delivering a seminar for teachers, on remote education.

The award also acknowledges my part in the development of the Guidelines on Children’s Data Protection in an Education Setting adopted in November 2020, working in collaboration with country representatives at the Council of Europe Committee for Convention 108, as well as with observers, and the Committee’s incredible staff.

2020 was a difficult year for people around the world under COVID-19 to uphold human rights and hold the space to push back on encroachment—especially for NGOs, and in community struggles from the Black Lives Matter movement to environmental action to  UK students on the streets of London to protest algorithmic unfairness. In Poland the direction of travel is to reduce women’s rights in particular. Poland’s ruling Law and Justice (PiS) party has been accused of politicising the constitutional tribunal and using it to push through its own agenda on abortion, and the government appears set on undermining the rule of law creating a ‘chilling effect’ for judges. The women of Poland are again showing the world, what it means and what it can cost to lose progress made.

In England at defenddigitalme, we are waiting to hear later this month, what our national Department for Education will do to better protect millions of children’s rights, in the management of national pupil records, after our Data Protection regulator, the ICO’s audit and intervention. Among other sensitive content, the National Pupil Database holds sexual orientation data on almost 3.2 million students’ named records, and religious belief on 3.7 million.

defenddigitalme is a call to action to protect children’s rights to privacy across the education sector in England, and beyond. Data protection has a role to play—within the broader rule of law— to protect and uphold the right to privacy, to prevent state interference in private and family life, and in the protection of the full range of human rights necessary in a democratic society. Fundamental human rights must be universally protected to foster human flourishing, to protect the personal dignity and freedoms of every individual, to promote social progress and better standards of life in larger freedoms.

The award was announced at the conference, “Real personal data protection in remote reality,” organized by the Personal Data Protection Office UODO, as part of the celebration of the 15th Data Protection Day on 28th January, 2021 with an award ceremony held on its eve in Warsaw.

activism, human rights, words

The last steps to safety: helping refugees in transit to Germany. Stories from border town volunteers.

As European leaders meet for the sixth time this year to talk about what to do about refugees, people on the ground are getting stuff done.

Freilassing Hilft, a collaboration of volunteers founded through four friends and a Facebook group eight weeks ago, feeds 1500 different people every day, who pass through the small border town in Germany.

“We’re expecting another 700 more this evening,” Rolf said, volunteering with the separate and long-established charity Caritas at Salzburg’s main station on the other side of the border.

Two “special” trains arrive daily from the south, from Vienna.

Individual men, women and children have become a package – ‘ die Flüchtlinge‘ – refugees – who arrive en masse. From the platforms they are escorted by police and young military service soldiers to segregated areas in the fluorescent lit station concourse.

There they wait.  Standing in an orderly narrow queue between cold aluminum crowd control barriers near the exit at the back of the station.

Chatting and relaxed at both ends of the line, a dozen heavily armed police supervise passing these people on. Dark navy uniforms stand out against the reflective white flooring. Big boots and bigger guns don’t seem a very friendly way to greet up to 1500 people a day who have left behind violence and conflict, with only the possessions they can carry; each with a small rucksack, some with small children.  The children look as mine would after travelling; a little fraught, bewildered and awake in harsh neon at night, when they should be asleep. Most but not all, clinging to a trusted parent. And no crying.

One teen is wandering on her own, looking a little lost, drowning in a turquoise terry towelling  dressing gown that’s too big. I wonder what her story is.

Along the ‘safety’ barricade, white vested volunteers weave back and forth holding out plastic bags of cheese sandwiches and drinks. “Hold them up high,” says Rolf waving 500ml water bottles in the air in his blue, disposable-gloved hands. “If they want them they’ll reach out and take them, you don’t need to say anything.”

There is calm and quiet. There are no words. Tense and tired looking faces nod respectfully to volunteers in appreciation of support. And still they wait for the special buses laid on to bring them across the Austrian-German border, to the small town of Freilassing, seven kilometres away. They will soon be in Germany.

Refugees can only cross the border on these supervised buses. Refugees aren’t allowed on the regular trains from Salzburg any more at all.

Special buses get driven discretely between Salzburg and Freilassing, often in the dark. The town of 16,000 inhabitants has been the checkpoint entry for numbers equivalent to about a tenth of its own population every day since the end of August.

From Freilassing special trains are onwardly coordinated by the Bundesbahn to take the refugees to a scattering of cities across the country. The refugees don’t get told where they are going. That’s deliberate,  said local volunteer, eighteen year-old Jana on the platform in Germany the next morning. She’s the deputy leader of the volunteer group Freilassing Hilft, an organisation founded through four friends’ collaboration in a Facebook group just 8 weeks ago, to give refugees support in transit.

“Some people have specific places they want to reach”, she explained. “They may have family members who they know are in Hamburg for example, and only want to get sent there. It could be upsetting to find they’re being sent somewhere else.”

Berlin, Magdeburg, they’ve been widely distributed, but few helpers know exactly where either.

While most refugees transfer directly from the Austrian buses to German train after registration checks and getting lunch bags from local volunteers, if a train isn’t due straight away they are bussed less than mile away to the Sägewerkstraße centre where they will stay no longer than 24 hours.

Those people who have not yet been registered by police – under tarpaulin awnings on the station platform, or on the bridge the Saarlachbrucke crossing point thirty at a time – go through the registration process at the centre.

In the dry and protected space the men, women and children get some respite, from the weather at least. Donations of winter clothes and shoes are distributed by Caritas volunteers and Freilassing Hilft to those who need them. Medics and professional volunteers can care for health needs. So close to their destination, it can be tense.

Sixty-four year old Kunnikunde joined the Caritas volunteer group in October. A group staffed mainly by pensioners since the students have returned to their studies. She helps distribute the donated clothing inside the former furniture showroom. “Helping them, seeing them smile, afterwards when it is over it is a great feeling, like running a marathon”, she said.

It’s not the same for everyone who works inside though. For the professionals who have been helping for longer, this intensive support is taking its toll. “I see dark faces in my dreams,” one told me. “I can’t forget them.” He sighed, clapped me on the shoulder, as if giving me some sign of solidarity in spirit. I wondered what support he needs and feels able to take, as he gives to others. He pulled on blue plastic gloves each with a professional snap, and went back inside.

The vast building is shut to other outsiders. It has no windows. Security teams patrol the barrier lines, marked off with tape and supported by local police. Whether it’s more to keep people from getting out or others getting in, I’m not sure.

It is not overstatement to say this is the biggest humanitarian disaster Europe has seen since the Second World War and Germany seventy years on, is again redistributing people fleeing war and its effects. As a border town, people in Freilassing have had plenty of experience.

Local feeling is mixed, says Jana. “We have three shifts,” she explained. “All together in the last five weeks we had probably 450 volunteers come and help us. And we get on well with the other organisations. We all work well together, the relationship with the police is very pleasant. But we certainly need to watch that the [public] mood doesn’t change.”

Since I met her two weeks ago, that number has rocketed to over two thousand individuals helping out, some coming to help from miles away.

Their organised management of community spirit is exemplary. They’ve channelled local people wanting to help, into actual donations and distribution of food and drink. An empty concrete floored shell of a shop-under-renovation is their base opposite the station to accept regular donations of thousands of apples, bananas, cereal bars, water, and sandwiches. Volunteers take shifts in the unheated room and bag up packed lunches for distribution to refugees arriving off  the buses. The group has borrowed a handful of supermarket trolleys to take supplies across the road.

Today’s “wish list” on Facebook:

– men’s winter shoes sizes 6+
– Bananas
– White rolls
– Still mineral water 0,5l
– children’s drinks 0,2l
– drawing things
– Babyshoes sizes 19-22
– Baby milk and bottles

“This shift is simply packing the lunch bags for a couple of hours, and we get lots of people if we put out a call,”  Jana explained when I asked how they get hold of what they need. “We can say, we need bananas, and after two hours we have sixteen crates of fruit and then people come along saying, but you have loads, you’re hoarding it. Other times we have nothing and need to use cash donations to buy everything ourselves. Last week we had to go twice a day to the supermarket, but we can’t go to Aldi anymore and just buy up all their stock. We need to pre-order and what we need can change in a matter of minutes. It’s hard to plan with.”

It’s an impressive set up by students who decided they could not simply stand by and do nothing. As we chat two more volunteers come along to register for shifts and Margret, a local mother of three, drops in a huge crate of apples from her orchard.

“What else can we do?” she asks. “You can’t just leave these people with nothing. Unless they felt forced to, they wouldn’t leave. There are families, and young children who are scared, and alone, and they need our help.”

One recent good news story Jana told me, had everyone in tears.

The police helped an asylum seeking Syrian husband in the north of Germany to go south again and reach Freilassing when he heard his wife had managed to escape the war zone one year after he had. Police had escorted him to the Sägewerkstraße, the building now known by the name of its street; enormous open plan furniture warehouse space donated by a local landowner as a staging post for the refugees’ journey. Meeting his wife after a year and two tortuous journeys apart was an emotional experience for them both, as well as all the Caritas charity and Red Cross staff involved. The asylum seeking couple were able to leave together and returned to his new home in the north. A rare good news story. Not all refugees find family or complete the journey safely with family they set out with. Not all refugees are from Syria, and some have traveled for up to two years before this last step to what they hope will be safety.

At the Austrian-German border police now check the ordinary vehicles passing through and ask for papers, a return of the border controls that had been removed in the Schengen agreement. A recent change which taxi driver Andreas is starting to feel has become too much of a burden on residents.

“For our children, or our children’s children, what is the future going to look like? We’ve got our own problems. Poverty, housing the elderly, and there never seems to be money to fix it. But suddenly for refugees, the money’s there.”

That Saturday saw two demonstrations.

One crowd called for support of the border towns, such as Freilassing, just as for the organisations and supporters who are engaging themselves in the work with the refugees. The Caritas Director Pralat Hans Lindenberger said that the refugees also needed to be shared fairly across the German states, as quickly and fairly as possible.

In the counter demonstration many of the attendees were brought in from different parts of Germany, says Jana, with few locals from far right and recognised Nazi organisations.

Supporters are however still signing up to help. While the number of refugees seeking asylum usually falls in winter as seas become more dangerous, this shows no sign of change yet despite or because of the reportedly cut rate crossings offered by the human traffickers.

Others are getting involved to help but to the volunteers it seems ad hoc. This Telekom portal launched today offering multi-lingual support. Long term volunteers will welcome the support tools for the refugees and their own staff.

Helpers and organisations are all calling for central government support.

In the short term, as winter snows may arrive soon, broader cooperation of nation states at government level in funding and manpower is needed in a consistent collaborative approach, as embodied by the Freilassing organisations in the microcosm of the Austrian-German border.

“Basically”, says the Red Cross volunteer, “all our leaders need to lead. Not only ours.”

Everyone is calling for greater leadership from not only the German government and more from Austria, but a collaboration including the UK. When I said I’m from the UK, they laughed. Since Germany takes the same number a day in this small town, as we might in two months time, I’m not surprised.

Austrian ‘support’ is also felt to be cursory, simply passing people on to Germany. No one knows how long goodwill in Freilassing can last. But volunteer numbers still say, ‘refugees welcome.’

Winter has begun. Although more support has been announced it is as yet unclear to the volunteers what it will offer where.

Unless there is safe passage to travel, and shelter at the point of arrival and all along ‘the route of Hope’ from Greece to Germany, the volunteers in Freilassing won’t help as many people as they do today, including the hundreds of unaccompanied children.

In the Alpine cold, many of them will simply never reach the border at all.

This UK response is not enough, not in this Parliament or even next year.

As political leaders prepare to meet in Malta to discuss measures to stem the flow of migrants and refugees from Africa to Europe,  I think of Rolf’s words, “you don’t need to say anything.”  But we do.

We need to speak up, so they hear a million voices of migrants. Speak up so that our leaders know they have the support of many people who want a more positive proactive approach in our population, but are not as vocal as the anti-immigration crowds. Speak up for the children who are still to set sail.

Any further border control agreements must put respect for human rights at their heart, not put more barriers in the way of people migrating or those getting on with grassroots practical support. Leaders must enable refugee routes to safety, and condemn those placing these people in more harm.

These people are survivors. They have not walked there, seen loved ones drown, given up all they know, for the joy of voluntourism. People in Germany laughed at our government’s commitment to take our share of people. It’s the only laugh I’ve heard recently in relation to refugee support.

As Kunnikunde said,“We have big hearts, but our generosity cannot go on forever. We all need to do this together.”

*****
*****

If you want to help make a difference and support refugees through volunteers at the organisation Freilassing Hilft (Freilassing Helps) you can make a regular or one-off donation. This enables them to buy stock according to need and in line with what donors have already provided.

Donations care of the charity:
Verein Europäischer Zwillings- und Mehrlingsfamilien e. V.
Account: VR RB Oberbayern Südost
IBAN: DE 787 109 000 000 002 310 45
BIC: GENODEF1BGL
Purpose: “FreilassingHilft”
The purpose is important so that “FreilassingHilft” gets the donation.

For a receipt of your donation, email: [email protected]. More information: see their Facebook group.

OR consider the Red Cross or the long established local Caritas.

Thank you.

justice payment

Foto credit and story supported by Freilassing Hilft

#caredata, activism, care.data, empowerment, engagement, health, NHSEngland, politics, privacy, transparency, trust

On Being Human – moral and material values

The long running rumours of change afoot on human rights political policy were confirmed recently, and have been in the media and on my mind since.

Has human value become not just politically acceptable, but politically valuable?

Paul Bernal in his blog addressed the subject which has been on my mind, ‘Valuing the Human’ and explored the idea, ‘Many people seem to think that there isn’t any value in the human, just in certain kinds of human.’

Indeed, in recent months there appears to be the creation of a virtual commodity, making this concept of human value “not just politically acceptable, but politically valuable.” The concept of the commodity of human value, was starkly highlighted by Lord Freud’s recent comments, on human worth. How much a disabled person should earn was the focus of the remarks, but conflated the price of labour and human value.

European Rights undermined

Given the party policy announcements and the response by others in government or lack of it, it is therefore unsurprising that those familiar with human rights feel they will be undermined in the event that the policy proposals should ever take effect. As the nation gears up into full electioneering mode for May 2015, we have heard much after party speeches, about rights and responsibilities in our dealings with European partners, on what Europe contributes to, or takes away from our sovereignty in terms of UK law. There has been some inevitable back-slapping and generalisation in some quarters that everything ‘Europe’ is bad.

Whether or not our state remains politically within the EU may be up for debate, but our tectonic plates are not for turning. So I find it frustrating when politicians speak of or we hear of in the media, ‘pulling out of Europe’ or similar.

This conflation of language is careless,  but I fear it is also dangerous in a time when the right wing fringe is taking mainstream votes and politicians in by-elections. Both here in the UK and in other European countries this year, far right groups have taken significant votes.

Poor language on what is ‘Europe’ colours our common understanding of what ‘Europe’ means, the nuances of the roles organisational bodies have, for example the differences between the European Court of Human Rights and the European Court of Justice, and their purposes are lost entirely.

The values imposed in the debate are therefore misaligned with the organisations’ duties, and all things ‘European’ and organisations  are tarred with the same ‘interfering’ brush and devalued.

Human Rights were not at their heart created by ‘Europe’ nor are they only some sort of treaty to be opted out from, [whilst many are enshrined in treaties and Acts which were, and are] but their values risk being conflated with the structures which support them.

“A withdrawal from the convention could jeopardise Britain’s membership of the EU, which is separate to the Council of Europe whose members are drawn from across the continent and include Russia and Ukraine. Membership of the Council of Europe is a requirement for EU member states.” [Guardian, October 3rd – in a clearly defined article]

The participation in the infrastructure of ‘Brussels’ however, is convenient to conflate with values; a loss of sovereignty, loss of autonomy, frivoulous legislation. Opting out of a convention should not mean changing our values. However it does seem the party attitude now on show, is seeking to withdraw from the convention. This would mean withdrawing the protections the structure offers. Would it mean withdrawing rights offered to all citizens equally as well?

Ethical values undermined

Although it varies culturally and with few exceptions, I think we do have in England a collective sense of what is fair, and how we wish to treat each others as human beings. Increasingly however, it feels as though through loose or abuse of language in political debate we may be giving ground on our ethics. We are being forced to bring the commodity of human value to the podium, and declare on which side we stand in party politics. In a time of austerity, there is a broad range of ideas how.

Welfare has become branded ‘benefits’. Migrant workers, ‘foreigners’ over here for ‘benefit tourism’. The disabled labeled ‘fit for work’ regardless of medical fact. It appears, increasingly in the UK, some citizens are being measured by their economic material value to contribute or take away from ‘the system’.

I’ve been struck by the contrast coming from 12 years abroad, to find England a place where the emphasis is on living to work, not working to live. If we’re not careful, we see our personal output in work as a measure of our value. Are humans to be measured only in terms of our output, by our productivity, by our ‘doing’ or by our intrinsic value as an individual life? Or simply by our ‘being’? If indeed we go along with the concept, that we are here to serve some sort of productive goal in society on an economic basis, our measurement of value of our ‘doing’, is measured on a material basis.

“We hear political speeches talking about ‘decent, hardworking people’ – which implies that there are some people who are not as valuable.”

I strongly agree with this in Paul’s blog. And as he does, disagree with its value statement.

Minority Rights undermined

There are minorities and segments of society whose voice is being either ignored, or actively quietened. Those on the outer edge of the umbrella ‘society’ offers us, in our collective living, are perhaps least easily afforded its protections. Travelers, those deemed to lack capacity, whether ill, old or young, single parents, or ‘foreign’ workers, to take just some examples.

I was told this week that the UK has achieved a  first. It was said, we are the first ‘first-world’ country under review by the CPRD for human rights abuse of the disabled. Which cannot be confirmed nor denied by the UN but a recent video indicated.

This is appalling in 21st century Britain.

Recently on Radio 4 news I heard of thousands of ESA claimants assigned to work, although their medical records clearly state they are long term unfit.

The group at risk highlighted on October 15th in the Lords, in debate on electoral records’ changes [col 206]  is women in refuges, women who feel at risk. As yet I still see nothing to assure me that measures have been taken to look after this group, here or for care.data.{*}

These are just simplified sample groups others have flagged at risk. I feel these groups’ basic rights are being ignored, because they can be for these minorities. Are they viewed as of less value than the majority of ‘decent, hardworking people’ perhaps, as having less economic worth to the state?

Politicians may say that any change will continue to offer assurances:
“We promote the values of individual human dignity, equal treatment and fairness as the foundations of a democratic society.”

But I simply don’t see it done fairly for all.

I see society being quite deliberately segmented into different population groups, weak and strong. Some groups need more looking after than others, and I am attentive when I hear of groups portrayed as burdens to society, the rest who are economically ‘productive’.

Indeed we seem to have reached a position in which the default position undermines the rights of the vulnerable, far from offering additional responsibilities to those who should protect them.

This stance features often in the media discussion and in political debate, on health and social care. DWP workfare, JSA, ‘bedroom tax’ to name but a few.


How undermining Rights undermines access

So, as the NHS England five year forward plan was announced recently, I wonder how the plan for the NHS and the visions for the coming 5 year parliamentary terms will soon align?

There is a lot of talking about plans, but more important is what happens as a result not of what we say, but of what we do, or don’t do. Not only for future, but what is already, today.

Politically, socially and economically we do not exist in silos. So too, our human rights which overlap in these areas, should be considered together.

Recent years has seen a steady reduction of rights to access for the most vulnerable in society. Access to a lawyer or judicial review has been made more difficult through charging for it.  The Ministry of Justice is currently pushing for, but losing it seems their quest in the Lords, for changes to the judicial review law.

If you are a working-age council or housing association tenant, the council limits your housing benefit claim if it decides you have ‘spare’ bedrooms. Changes have hit the disabled and their families hardest. These segments of the population are being denied or given reduced access to health, social and legal support.

Ethical Values need Championed

Whilst it appears the state increasingly measures everything in economic value, I believe the public must not lose sight of our ethical values, and continue to challenge and champion their importance.

How we manage our ethics today is shaping our children. What do we want their future to be like? It will also be our old age. Will we by then be measured by our success in achievement, by what we ‘do’, by what we financially achieved in life, by our health, or by who we each are? Or more intrinsically, values judged even, based on our DNA?

Will it ever be decided by dint of our genes, what level of education we can access?

Old age brings its own challenges of care and health, and we are an aging population. Changes today are sometimes packaged as shaping our healthcare fit for the 21st century.

I’d suggest that current changes in medical research and the drivers behind parts of the NHS 5YP vision will shape society well beyond that.

  • We have a universal human right to healthcare  for all
  • We have a free-at-the-point-of-provision National Health Service in England, how will the plan maintain that and at the same time,
  • We expect science and technology in medicine to drive forward improvements in life quality, care and treatments.

What restrictions do we place on value and how are moral and material values to play out together? Are they compatible or in competition?

Because there is another human right we should remember in healthcare, that of striving to benefit from scientific improvement.

This is an area in which the rights of the vulnerable and the responsibilities to uphold them must be clearer than clear.

In research if Rights are undermined, it may impact Responsibilities for research

I would like to understand how the boundary is set of science and technology and who sets them on what value basis in ethics committees and more. How does it control or support the decision making processes which runs in the background of NHS England which has shaped this coming 5 year policy?

It appears there are many decisions on rare disease, on commissioning,  for example, which despite their terms of reference, see limited or no public minutes, which hinders a transparency of their decision making.

The PSSAG has nothing at all. Yet they advise on strategy and hugely significant parts of the NHS budget.

Already we see fundamental changes of approach which appear to have economic rather than ethical reasons behind them. This in stem-cell banking, is a significant shift for the state away from the absolute belief in the non-commercialisation of human tissue, and yet little public debate has been encouraged.

There is a concerted effort from research bodies, and from those responsible for our phenotype data {*}, to undermine the coming-in-2015, stronger, European data protection and regulation, with attempt to amend EU legislation in line with [less stringent] UK policy. Policy which is questioned by data experts on the use of pseudonymisation for example.

How will striving to benefit from scientific improvement overlap with material values of ‘economic function’ is clear when we hear often that UK Life Sciences are the jewel in the crown of the UK economy? Less spoken of, is how this function overlaps with our moral values.

“We’ve got to change the way we innovate, the way that we collaborate, and the way that we open up the NHS.” [David Cameron, 2011]

In this five year period ahead, in which the coming parliamentary and NHS Forward Plan will coexist, the Genomics England Ltd. plan mentioned in the 5YP is due to conclude in 2017 having mapped 100,000 genomes, of about 35K patients and 40K of their relatives.

We should be both optimistic and ambitious for the further advances that lie within our reach. Medicine is becoming more tailored to the individual.”

These medical advances will demand we make wise ethical decisions, and to do that we must be informed. I’ll consider this more in another post, On Being Human : Part Two.

Consider the current changes in Rights underway and changes in UK regulation together, and factor in what change any further changes in European legislation may mean.

In the mean time, I ask that you consider the changing political landscape in which current changes to legislation are affecting the market, the commercialisation of different areas of activity and the desirability of ‘the promotion of economic growth.’

What moral rights citizens rights will have, may be about to come into direct conflict with material values, and the balance weighted in favour of the material, strengthened a statutory footing.

Today, I suggest whilst we hear so often of material values, we must also consider our own moral values and those of the collective decision making parliamentary and regulatory bodies. We must pay attention to how language is presenting and packaging the discussion, whether in health, politics and economics.

How are certain individuals treated or their needs catered for as a certain part of society, and are all to be treated equally, with access to their rights? If not, where do you draw the line?

What value do we place on being human?

We must find our own moral compass to find a State standpoint on whether we see human worth as a commodity, or whether it should be.

Where will the future balance lie between material and moral rights?

Because the current direction of travel is clear. Everything has a price.

But at what cost?

**** Relevant for research background {*}:

The last six months of  my blog ‘thinking to some purpose’ has been spent doing my best to raise concerns from the public on care.data, in the hope of making a positive difference.

For anyone less familiar with it, this is the initiative to extract and use our confidential GP records for purposes other than direct care. Those concerns remain unanswered, so for my summary,  see here, my six month round up.

Whilst care.data announced that the CCGs had been selected in which GP practices will pilot care.data, but further facts remain unclear what exactly what they will pilot [communications or going also to extraction] or when. For both the public in those locations and elsewhere, we can only wait and see, how long, is an unknown.

#caredata, activism, care.data, choice, engagement, family, HSCIC, leadership, leaflet, privacy

Patient questions on care.data – an open letter

Dear NHS England Patients & Information Directorate,

We’ve been very patient patients in the care.data pause. Please can we have some answers now?

I would like to call for greater transparency and openness about the promises made to the public, project processes & policies and your care.data communication plans.

In 2013, in the Health Service Journal Mr. Kelsey wrote:

“When patients are ignored, they are most at risk; that was the central conclusion of the report by Robert Francis into Stafford hospital.

Don Berwick, in his safety review, said the NHS should be “engaging, empowering and hearing patients and their carers all the time.

“That has been my mission since I started as National Director for Patients and Information: to support health and care services transform transparency and participation.“

HSJ, 10th December 2013

It is time to walk-the-talk for care.data under this banner of transparency, participation and open government.

Response to the Listening exercises

The care.data listening phase, introduced by the pause announced on February 18th, has captured a mass of questions, the majority of which still remain unaddressed.

At one of these sessions, [the 1-hr session on June 17th Open House, linking ca. 100 people at each of the locations in Basingstoke, Leicester, London, and York] participants were promised that our feedback would be shared with us later in the summer, and posted online. After the NHS AGM on Sept 18th I was told it would happen ‘soon’. It is still not in the public domain.

At every meeting all the unanswered questions, on post-it notes, in table-group minutes or scribbled flipcharts, were gathered ‘to be answered at a later date’. When will that be?

To date, there has been no published information which addresses the unanswered event questions.

Transparency of Process, Policies and Approach

The care.data Programme Board has held meetings to plan the rollout process, policies and approach. The minutes and materials from which have not been published. I find this astonishing when one considers that the minutes of the care.data advisory group, NIB (new), CAG, GPES advisory or even NHS England Board itself are in the public domain. I believe the care.data Programme Board meeting materials should be too.

It was acknowledged through the Partridge Review of past use of our hospital records that this HES data is not anonymous. The extent of its sale to commercial third-parties and use by police and the Home Office was revealed. This is our medical data we gave to hospitals and in our wider medical use for our care. Why are we the last to hear it’s being accessed by all sorts of people who are not at all involved in our clinical care?

Even for commissioning purposes it is unclear how these datasharing reasons are justified when the Caldicott Review said extracting identifiable data for risk stratification or commissioning could not be assumed under some sort of ‘consent deal’?

“The Review Panel found that commissioners do not need dispensation from confidentiality, human rights and data protection law…” [The Information Governance review, ch7]

The 251 approval just got extended *again* – until 30th April 2015. If you can’t legally extract data without repeat approvals from on high, then maybe it’s time to question why?

The DoH, NHS England Patients and Information Directorate, HSCIC, and indeed many data recipients, all appear to have normalised an approach that for many is still a shock. The state centralised and passed on our medical records to others without our knowledge or permission. For years. With financial exchange. 

Amazingly, it continues to be released in this way today, still without our consent or fair processing or publicised way to opt out.

“To earn the public’s trust in future we must be able to show that our controls are meticulous, fool-proof and solid as a rock.”  said Sir Nick Partridge in his summary review.

Now you ask us to trust in care.data that the GP data, a degree more personal, will be used properly.

Yet you ask us to do this without significant changes in legislation to safeguard tightly defined purposes who can access it and why, how we control what future changes may be made without our knowledge and without a legally guaranteed opt out.

There is no information about what social care dataset is to be included in future, so how can we know what care.data scope even is yet?

Transparency cannot be a convenient watch word which applies with caveats. Quid pro quo, you want our data under an assumed consent process, then guarantee a genuinely informed public.

You can’t tell patients one approach now, then plan to change what will be said after the pilot is complete, knowingly planning a wider scope to include musculoskeletal or social care data and more.  Or knowing you plan to broaden users of data [like research and health intelligence currently under discussion at IAG ] but only communicate a smaller version in the pilot. That is like cheating on a diet. You can’t say and do one thing in public, then have your cake and eat it later when no one is looking. It still counts.

In these processes, policies and approach, I don’t feel my trust can be won back with lack of openness and transparency. I don’t yet see a system which is, ‘meticulous, fool-proof or solid as a rock’.

‘Pathfinder’ pilots

Most recently you have announced that four areas of CCGs will pilot the ‘pathfinder’ stage in the rollout of phase one. But where and when remains a  mystery. Pathfinder communications methods may vary from place to place and trial what works and what fails. One commendable method will be a written letter.

However even given that individual notice intent, we cannot ignore that many remaining questions will be hard to address in a leaflet or letter. They certainly won’t fit into an SMS text.

Why pilot communications at all which will leave the same open questions unanswered you already know, but have not answered?

For example, let’s get a few of the missing processes clarified up front:

  • How will you communicate with Gillick competent children, whose records may contain information about which their parents are not aware?
  • How will you manage this for elderly or vulnerable patients in care homes and with diminished awareness or responsibility?
  • What of  the vulnerable at risk of domestic abuse and coercion?
  • When things change in scope or use, how will we be given the choice to change our opt out decision?

I ask you not to ignore the processes which remain open. They need addressed BEFORE the pilot, unless you want people to opt out on the basis of their uncertainty and confusion.

What you do now, will set the model expectations for future communications. Patient online. Personalised medicine. If NHS health and social care is to become all about the individual, will you address all individuals equally or is reaching some less important than others?

It seems there is time and effort in talking to other professionals about big data, but not to us, whose data it is. Dear Patients & Information Directorate, you need to be talking to us, before to others about how to use us.

In March, this twelve point plan made some sensible suggestions.

Many of them remain unaddressed. You could start there. But in addition it must be clear before getting into communications tools, what is it that the pathfinders are actually piloting?

You can’t pilot communications without clearly defined contents to talk about.

Questions of substance need answers, the ten below to start with.

What determines that patients understand the programme and are genuinely informed, and how will it be measured?

Is it assumed that pilots will proceed to extraction? Or will the fair processing efforts be evaluated first and the effort vs cost be taken into account whether it is worth proceeding at all?

Given the cost involved, and legal data protection requirements, surely the latter? But the pathfinder action plan conflates the two.

Citizen engagement

Let’s see this as an opportunity to get care.data right, for us, the patients. After all, you and the rest of the NHS England Board were keen to tell us at the NHS AGM on September 18th, how valuable citizen engagement is, and to affirm that the NHS belongs to us all.

How valued is our engagement in reality, if it is ignored? How will involvement continue to be promoted in NHS Citizen and other platforms, if it is seen to be ineffective? How might this negatively affect future programmes and our willingness to get involved in clinical research if we don’t trust this basic programme today?

This is too important to get wrong. It confuses people and causes concern. It put trust and confidence in jeopardy. Not just for now, but for other future projects. care.data risks polluting across data borders, even to beyond health:

“The care.data story is a warning for us all. It is far better if the industry can be early on writing standards and protocols to protect privacy now rather than later on down the track,” he said. [David Willets, on 5G]

So please, don’t keep the feedback and this information to internal departments.

We are told it is vital to the future of our NHS. It’s our personal information.  And both belong to us.

During one Health Select Committee hearing, Mr. Kelsey claimed: “If 90 per cent opt out [of care.data], we won’t have an NHS.”

The BMA ARM voted in June for an opt in model.

ICO has ruled that an opt in model by default at practice level with due procedures for patient notification will satisfy both legal requirements and protect GPs in their role as custodians of confidentiality and data controllers. Patient Concern has called for GPs to follow that local choice opt in model.

I want to understand why he feels what the risk is, to the NHS and examine its evidence base. It’s our NHS and if it is going to fail without care.data and the Board let it come to this, then we must ask why. And we can together do something to fix it. There was a list of pre-conditions he stated at those meetings would be needed before any launch, which the public is yet to see met. Answering this question should be part of that.

It can’t afford to fail, but how do we measure at what cost?

I was one of many, including much more importantly the GPES Advisory Group, who flagged the shortcomings of the patient leaflet in October 2013, which failed to be a worthwhile communications process in January. I flagged it with comms teams, my MP, the DoH.

[Sept 2013 GPES Advisory] “The Group also had major concerns about the process for making most patients aware of the contents of the leaflets before data extraction for care.data commenced”.

No one listened. No action was taken. It went ahead as planned. It cost public money, and more importantly, public trust.

In the words of Lord Darzi,

“With more adroit handling, this is a row that might have been avoided.”

Now there is still a chance to listen and to act. This programme can’t afford to pilot another mistake. I’m sure you know this, but it would appear that with the CCG announcement, the intent is to proceed to pilot soon.  Ready or not.

If the programme is so vital to the NHS future, then let’s stop and get it right. If it’s not going to get the participation levels needed, then is it worth the cost? What are the risks and benefits of pressing ahead or at what point do we call a halt? Would it be wise to focus first on improving the quality and correct procedures around the data you already have – before increasing the volume of data you think you need? Where is the added intelligence, in adding just more information?

Is there any due diligence, a cost benefit analysis for care.data?

Suggestions

Scrap the ‘soon’ timetable. But tell us how long you need.

The complete raw feedback from all these care.data events should be made public, to ensure all the questions and concerns are debated and answers found BEFORE any pilot.

The care.data programme board minutes papers and all the planning and due diligence should be published and open to scrutiny, as any other project spending public funds should be.

A public plan of how the pathfinders fit into the big picture and timeline of future changes and content would remove the lingering uncertainty of the public and GPs: what is going on and when will I be affected?

The NHS 5 year forward view was quite clear; our purse strings have been pulled tight. The NHS belongs to all of us. And so we should say, care.data  can’t proceed at any and at all costs. It needs to be ‘meticulous, fool-proof and solid as a rock’.

We’ve been patient patients. We should now expect the respect and response, that deserves.

Thank you for your consideration.

Yours sincerely.

 

Addendum: Sample of ten significant questions still outstanding

1. Scope: What is care.data? Scope content is shifting. and requests for scope purposes are changing already, from commissioning only to now include research and health intelligence. How will we patients know what we sign up to today, stays the purposes to which data may be used tomorrow?

2. Scope changes fair processing: We cannot sign up to one thing today, and find it has become something else entirely tomorrow without our knowledge. How will we be notified of any changes in what is to be extracted or change in how what has been extracted is to be used in future – a change notification plan?

3. Purposes clarity: Who will use which parts of our medical data for what? a: Clinical care vs secondary uses:

Given the widespread confusion – demonstrated on radio and in press after the pathfinders’ announcement – between care.data  which is for ‘secondary use’ only, i.e. purposes other than the direct care of the patient – and the Summary Care Record (SCR) for direct care in medical settings, how will uses be made very clear to patients and how it will affect our existing consent settings?

3. Purposes definition: Who will use which parts of our medical data for what?  b) Commercial use  It is claimed the Care Act will rule out “solely commercial”purposes, but how when what remains is a broad definition open to interpretation? Will “the promotion of health” still permit uses such as marketing? Will HSCIC give its own interpretation, it is after all, the fact it operates within the law which prescribes what it should promote and permit.

3. Purposes exclusion: Who will use which parts of our medical data for what?  c) Commercial re-use by third parties: When will the new contracts and agreements be in place? Drafts on the HSCIC website still appear to permit commercial re-use and make no mention of changes or revoking licenses for intermediaries.

4a. Opt out: It is said that patients who opt out will have this choice respected by the Health and Social Care Information Centre (i.e. no data will be extracted from their GP record) according to the Secretary of State for Health  [col 147] – but when will the opt out – currently no more than a spoken promise – be put on a statutory basis? There seem to be no plans whatsoever for this.

Further wider consents: how patients will know what they have opted into or out from is currently almost impossible. We have the Summary Care Record, Proactive care in some local areas, different clinical GP systems, the Electronic Prescription Service and soon to be Patient Online, all using different opt in methods of asking and maintaining data and consent, means patients are unsurprisingly confused.

4b. Opt out: At what point do you determine that levels of participation are worth the investment and of value? If parts of the population are not represented, how will it be taken into account and remain valuable to have some data? What will be statistically significant?

5. Legislation around security: The Care Act 2014 is supposed to bring in new legislation for our data protection. But there are no changes to date as far as I can see – what happened to the much discussed in Parliament, one strike and out. Is any change still planned? If so, how has this been finalised and with what wording, will it be open to Parliamentary scrutiny?  The Government claim to have added legal protection is meaningless until the new Care Act Regulations are put in front of Parliament and agreed.

6. What of the Governance changes discussed?

There was some additional governance and oversight promised, but to date no public communication of changes to the data management groups through the HRA CAG or DAAG and no sight of the patient involvement promised.

The Data Guardian role remains without the legal weight that the importance of its position should command. It has been said this will be granted ‘at the earliest opportunity.’ Many seem to have come and gone.

7. Data security: The planned secure data facility (‘safe setting’) at HSCIC to hold linked GP and hospital data is not yet built for expanded volume of data and users expected according to Ciaran Devane at the 6th September event. When will it be ready for the scale of care.data?

Systems and processes on this scale need security designed, that scales up to match in size with the data and its use.

Will you proceed with a pilot which uses a different facility and procedures from the future plan? Or worse still, with extracting data into a setting you know is less secure than it should be?

8. Future content sharing: Where will NHS patients’ individual-level data go in the longer term? The current documentation says ‘in wave 1’ or phase one, which would indicate a future change is left open, and indicated identifiable ‘red’ data is to be shared in future?  “care.data will provide the longer term visions as well as […] the replacement for SUS.”

9.  Current communications:

    • How will GPs and patients in ‘pathfinder’ practices be contacted?
    • Will every patient be written to directly with a consent form?
    • What will patients who opted out earlier this year be told if things have changed since then?
    • How will NHS England contact those who have retired or moved abroad recently or temporarily, still with active GP records?
    • How will foreign pupils’ parents be informed abroad and rights respected?
    • How does opt out work for sealed envelopes?
    • All the minorities with language needs or accessibility needs – how will you cater for foreign language, dialect or disability?
    • The homeless, the nomadic,  children-in-care
    • How can we separate these uses clearly from clinical care in the public’s mind to achieve a genuinely informed opinion?
    • How will genuine mistakes in records be deleted – wrong data on wrong record, especially if we only get Patient Online access second and then spot mistakes?
    • How long will data be retained for so that it is relevant and not excessive – Data Protection principle 3?
    • How will the communications cater for both GP records and HES plus other data collection and sharing?
    • If the plan is to have opt out effective for all secondary uses, communications must cater for new babies to give parents an informed choice from Day One. How and when will this begin?

No wonder you wanted first no opt out, then an assumed consent via opt out junk mail leaflet. This is hard stuff to do well. Harder still, how will you measure effectiveness of what you may have missed?

10. Pathfinder fixes: Since NHS England doesn’t know what will be effective communications tools, what principles will be followed to correct any failures in communications for any particular trial run and how will that be measured?

How will patients be asked if they heard about it and how will any survey, or follow up ensure the right segmentation does not miss measuring the hard to reach groups – precisely those who may have been missed?  i.e. If you only inform 10% of the population, then ask that same 10% if they heard of care.data, you would expect a close to 100% yes. That’s not reflective that the whole population was well informed about the programme.

If it is shown to have been ineffective, at what point do you say Fair Processing failed and you cannot legally proceed to extraction?

> This list doesn’t yet touch on the hundreds of questions generated from public events, on post-its and minutes. But it would be a start.

*******

References for remaining questions:

17th June Open House: Q&A

17th June Open House: Unanswered public Questions

Twelve point plan [March 2014] positive suggestions by Jeremy Taylor, National Voices

6th September care.data meeting in London

image quote: Winnie The Pooh, A.A. Milne

activism, engagement, leadership, politics

Human Rights proposals – stripping away the Spirit of the Human Rights Act (1998)

News today confirms what has been on simmer for some time in England:

“A majority Conservative Government will scrap Labour’s Human Rights Act, and will end the ability of the European Court of Human Rights to order changes to British laws.” [Jack of Kent, October 2nd]

The Rt Hon Lord Howard of Lympne, CH, QC said:

“The argument is not about human rights, to which we all subscribe […] the way in which the Convention on Human Rights has been interpreted is far removed from its founders’ intentions.

“We are simply restoring parliamentary sovereignty, and some much needed common sense, to our human rights laws.”

If it is truly only about common sense, everyone with common sense must support it. So why the wide press and social media uproar, and statements by other parties they would vote against such a proposal in Parliament?

“No, the argument today is whether arrangements such as the European Court of Human Rights and the Human Rights Act actually help to protect such rights or, by the way in which they have operated, bring the concept into disrepute.”

The argument appears to suggest, that there should be no need to be concerned about the removal of laws which ‘protect such rights’, that there is nothing to hide, nothing to fear. That in fact, we will do better by removing the framework which supports the common sense process. Common sense will operate and prevail without legislation.

If we believe the policy statement that under these changes, in effect, little would change for many people, why are the changes needed? By many accounts, many good results of the 1998 Act affect many of us.

Those much better informed than me, are debating this in the media and online, and is worth following. But I think we should be careful we don’t get so caught up in looking ahead, that we miss changes going on now.

The debate makes me ask myself, what is the purpose of a law, and whom should it serve?

If we are convinced change is needed, we assume a belief that the current process is flawed.  This comes in part from myths and misrepresentations in isolated cases. We should in discussion see past the UKIP defection, knee-jerk reaction which conflates everything ‘Europe’, into something from which which the UK could ‘opt out’ and what risks and benefit it would actually bring for whom.

Even if these changes were simply a case of choosing to ‘opt-out’ from the protections of the European Court for UK Citizens (which it is not) and even if one were to agree common sense can make better decisions without legal protection, one must consider that by removing the UK Human Rights Act [which had cross party support in 1998], and the European aspect of the laws, and by suggesting amendments to the 1951 European convention on human rights, changes would remove a layer of external protection and last support channel outside the UK system, for us as citizens.

Stripping away a spirit of Governance

Does this affect the opportunity for citizens and courts to benefit from external objectivity?

The 1998 Act was intended to reduce the number of cases going to the European Court. You can still take a case to the European Court, but the Human Rights Act meant a case has to go through the UK courts first. Whilst Scotland (and Wales to a lesser extent) has some devolved and historically founded independent law making processes, the 1998 Human Rights Act covers the whole of the UK. As does the ability to go to the European Courts as an extra layer of legal protection, guidance and enlightenment if exhausted at home. 

Will we no longer be able as legitimately, to call on bodies with cross-border, external best practices to learn from which has any accepted weight? Or cases to set precedence? But does the European Court have these powers anyway or do these policy statements just cause confusion?

Former Attorney General Dominic Grieve said the plans were flawed. The Tory MP said they would be “difficult to implement” and risked “undermining” the UK’s – and his own party’s – tradition of upholding human rights.
Proposals state: ‘In future ‘Britain’s courts would no longer be required to take into account rulings from the Court in Strasbourg. This would make our Supreme Court the ultimate arbiter of human rights matters in the UK.’

The statement gives the strong impression that the UK will regain a lost level of independence as a deal for giving up a layer of objectivity and governance.

In fact, we would not do so by repealing the 1998 Human Rights Act, the European Court would keep its role in the UK in practice.

Liberty clarified: “The Human Rights Act did not make Strasbourg a precedent-setting Court, as the proposals claim. This proposal will not increase the Supreme Court’s constitutional standing. It is already the ultimate arbiter of human rights cases in the UK but, if we remain part of the Convention, British people will still be able to take claims to Strasbourg once domestic litigation is exhausted. The dilution of Convention rights proposed makes it more likely that Strasbourg will find against the UK. The Court has no ability to require the UK to change British laws. Parliamentary sovereignty is intact, as made clear by the non-implementation of the prisoner voting judgment. But the British Government has ratified the Convention and so undertaken to comply with its international law obligations to respect the decisions of the Court.” [Liberty]

However the side comments on the 1951 Convention are of much more concern to me.

Are the Conservative proposal really going so far as to say it would remove that Convention undertaking, and no longer respect international law? Surely not in practice, but in spirit, it seems to suggest just that.

They would seek to: “Clarify the Convention rights, to reflect a proper balance between rights and responsibilities.”

that would be a huge change with respect for our position towards international law.

It seems to suggest that there would be a trade off giving up the universally applicable nature in the 1951  convention on Human Rights, to enable selective decisions which and when, rights would apply.

 

Stripping away the rights which apply to all

The basic principles of universality, inalienability and indivisibility, [outlined here by Liberty] are under threat through these changes:

 

“Human rights are universal. They apply to all people simply on the basis of being human.

Human rights are inalienable. They cannot be taken away simply because we do not like the person seeking to exercise their rights. They can only be limited in certain tightly-defined circumstances and some rights, such as the prohibition on torture and slavery, can never be limited.

Human rights are indivisible. You cannot pick and choose which rights you want to honour. Many rights depend on each other to be meaningful – so, for example, the right to fair trial would be meaningless without the prohibition on discrimination, and the right to free speech must go hand in hand with the right to assemble peacefully.”

Isabella Sankey, Director of Policy has taken apart some of the implications here. Her post is worth a thorough read.

Stripping away rights of access

 

It appears that we are moving towards a state in which the suggestion is that laws from the top down to control citizens’ rights will be applied universally, whilst at the same time, the rights of those who may feel unfairly treated by them are becoming restricted, through policy and in practical terms.

 

If British citizens would still be able to take claims to Strasbourg once domestic litigation is exhausted, they have to be able to not just in theory, but practice.

Courts which exist as channels to a fair appeal are only applicable to all as a right effectively, if they can be accessed by all. In the UK the  judicial review practices have changed on charging, which make universal access to judicial review harder. Recent changes to legal aid funding mean fewer people can afford access to representation.

 

This report from the International Council on Human Rights Policy may be ten years old, but is still I feel, relevant.

“…individuals, particularly those who are vulnerable because of exclusion, poverty and discrimination, unable to obtain benefits and rights to which they are entitled in law? This report examines the impediments that obstruct large numbers of people from accessing the full range of human rights. It analyses the performance and responsibilities of governments and other institutions, and identifies new forms of action that official and human rights organisations might need to undertake if access is to be improved.”

If Human Rights law is not accessible to all, and does not apply equally to all, it is not universal. Either not all are humans or they are not rights. Either way, the law is flawed.

 

I believe being universally applicable must also ensure universal access in order to be meaningful.

 

Stripping the Spirit of accepted Human Rights

Whilst the Acts  and declarations have legal weight which are of intrinsic importance and value, I believe it is also of importance to value the philosophy of the principles. It is this loss which worries me as much as the thought of losing concrete governance. We risk losing not only the protections of the law, but the Spirit of the law.

The spirit acts as an additional layer of conscience accompanying lawmakers and politicians in their decision making process.

I fear that he spirit of the values the state places on human rights,has been injured in recent times.

 I fear an ‘accepted’ element of barbarism has crept into our own humanity in the treatment of our ‘prisoners of war’.

 

The right not to be tortured or treated in an inhuman or degrading way is an absolute right. It should never be limited and it is a commonly held belief that there are no circumstances where this type of treatment of people can be justified.

 

However torture has become apparently justifiable recently. Justified by the highest authority in the US, some may see as the highest ‘western world power’. “We tortured some folks” was justified with the near flippant tone of a bumper sticker. Little official repercussion  appears to follow.

 

In doing so, the affiliated powers revealed how far we have fallen from our ideals of humanity embodied in the Universal Declaration of Human Rights.

Our values and self created global ethic in which some human rights are absolute.

It appears we have allowed through our government’s use of torture, an absolute boundary to be broken. So should we be surprised if that was only a first step? What is perceived as acceptable in how our government treats others, can only lead to a contagion in perception of what is right and acceptable in how others will treat our people abroad.

Crucially, I believe it also affects our own public perception of acceptance and ‘the norm’ in how we treat our own people.

Yet again, at home in human rights law, perception may be that this will not affect us. Not ‘our own’ kind of people. It will only affect ‘others’.

But the others in the case of human rights in the UK, may be our own gender or racial discrimination case at work. It may be how our friend or family member is treated by the authorities in sexual discrimination or in disability claims process.  Those in prison, the poor, minorities – these groups suit some agendas to portray as ‘other’. To thrive, I believe we must strive to remember our togetherness as a society which looks after one another, not treats ‘others’ as outside our realm of protections. As somehow, less ‘entitled’.  Less entitled to welfare. Less entitled to vote. Less entitled to universal rights.

If you think, no not me, then let’s consider closely our own reaction to the arrival of travellers in a local field. Or news of immigrants awaiting asylum rulings being housed in bed-and-breakfast accommodation.

It seems that to whom our human rights should apply, would become discretionary.

Are some Human Rights Claims more Trivial than Others? What about the same Human Rights for all?

If the majority of rights are non-absolute and can be limited or restricted in certain circumstances, we should not be surprised if these too are now trampled on if found to be ‘trivial’. The circumstances in which there is a need to take into account the rights of other individuals or wider society would become  discretionary.  How would that be defined and by whom?

“Limit the use of Human Rights laws to the most serious cases.”

There will be a threshold below which Convention rights will not be engaged, ensuring UK courts strike out trivial cases.

It appears that which subjects and in which circumstances individuals should be entitled access to human rights protection would become discretionary.

By saying some ‘trivial’ cases would not be relevant for consideration, you throw out the spirit of the universal applicability of Human Rights’ legislation.

Where does this leave the Spirit of our Human Rights in practice?

Politicians may say that in practice, any change will continue to ensure that:
“We promote the values of individual human dignity, equal treatment and fairness as the foundations of a democratic society.”

But current reality is that changes have already made universal access to judicial review harder. Reality is that the changes to legal aid funding already means fewer people can afford access to representation. Minority groups find access a challenge. Mothers without means are representing themselves in divorce cases. People are facing abusers in court.

If now we further undermine both access and applicability, the reality is under the law some will be more equal than others.

So what of our basic principles?

Human rights are universal. They apply to all people simply on the basis of being human.

Human rights are inalienable. They cannot be taken away simply because we do not like the person seeking to exercise their rights.

Human rights are indivisible. You cannot pick and choose which rights you want to honour.

Whether this policy ever becomes reality or not, it harms the perception of the value we place on human rights, at home and abroad.

Universality of application and universal access are already under real threat, creating inequality for which humans, these laws offer support.

These proposals normalise what is in fact nonsense.

Whilst at least for now, it makes no difference in legal practice, I think the Spirit of Human Rights in the UK under this proposal, just had her wings stripped off.

 

***

Chris Grayling’s eight-page strategy paper http://s3.documentcloud.org/documents/1308660/protecting-human-rights-in-the-uk.txt

[Liberty useful listing of what the Human Rights Act covers.]

activism, empowerment, engagement, politics, women

Deeds not Words – Women’s Political and Electoral Engagement

Suffragette
ca 1920 first US election to offer women the right to vote

“A hundred years on, would those suffragist women feel it was worth their collective effort and what it cost them as individuals?”

One hundred years ago today, protestors gathered outside Buckingham Palace under the banner of ‘Votes for Women‘. It was barely a year since the death of Emily Wilding-Davison at the Derby in June, 1913. Possibly the best known of the women who had campaigned in the suffragist movement (1), made famous after she died from her injuries after being trampled by the King’s horse Anmer at Tattenham Corner (2). There is still debate whether it was suicide or accidental.

The National Union of Women’s Suffrage (the NUWSS) had failed through peaceful means to reach their goal despite having the support of men and members’ bills in Parliament. The Sufragette group, the WSPU, were less patient.

Under the slogan ‘Deeds not Words’, the anniversary of Emily Wilding Davison’s death last summer triggered a spate of features. There was an excellent historical account delivered in Parliament, by Dr. Mari Takayanagi (4), which includes how the movement and ‘votes for women’ and first female MPs appeared to have made a difference in Parliament.

“There was a raft of legislation passed throughout the 1920s on issues that affected women’s lives and gender equality – including things like the Sex Disqualification Removal Act which allowed women to practice as lawyers, to enter professions like accountancy and become vets and so on for the first time. There were acts about things like pensions; there were acts allowing women to inherit property; there were acts about things like the age of consent and the sale of alcohol to young people. The list goes on and on.

And none of this kind of thing was passed before the First World War and you’ve got to think it’s because women are part of the electorate now and the male MPs had to sit up and take notice of their views as they hadn’t before.”

However, what has been done since the anniversary to address the importance and relevance of women’s votes today and to encourage electoral engagement before these European and local elections on May 22nd 2014?

A hundred years on, would those suffragist women feel it was worth their collective effort (3) and what it cost them as individuals?

In 2013 my local election saw the Conservative candidate win only 231 votes ahead of UKIP – both candidates attaining over 1000 votes, in a turnout of barely 32%. I spoke to her and others, after that vote, on the subjects of women in politics and the continued importance of women’s rights and activism.

Pat Arculus, is our Conservative County Councillor and an Adult Safeguarding Champion. She said,

“It’s a funny game politics, how can we change it? I’ve just been watching Question Time. They’re arguing about the Health Service. You watch it and think, how is this relevant? Why don’t they just get together and sort it out? I think that may be it, women just want to get things done. You run a family, you have a problem, you sort it out and get on. You don’t spend hours arguing about it. Perhaps that’s what puts women off politics.”

Women today in the UK get to participate in the democratic process thanks at least in part, to the efforts and commitment of those women, not so many generations ago  But do women today see the need for their active participation? According to Mrs. Arculus, her recent experience of electoral engagement is poor.

“There is a complete disaffection. It’s not even apathy. It’s “we don’t like politics”, “it doesn’t make any difference,” and “it doesn’t matter who we vote for.” If our young people hear that, then it’s a self-fulfilling prophecy.

“I was delivering leaflets and teenagers in the garden, I don’t know if they were of voting age, said, “no no take it back, we don’t vote for them.” I was shocked. As a mother it’s not my place to tell them who to vote for. I’d say to young people, read everything, read them all and make your own mind up. If you go into schools and they run mock elections, they are more active than we give them credit for. They seem to lose it, when they get older and don’t see any point.”

But this comment from a year ago, is what we must encourage the major parties pay attention to now, for the 2015 General election:

“In the last election, my majority fell from 2,800 to 220 and that all went to UKIP. So the public are feeling angry, about something.”

Emily Davison, with a first class degree in English as a man, could have walked into many jobs. In her time, with the equivalent as a woman, she was unable to participate in various circles, and found work as a governess and then, as a result of her activism, was sacked.

The issues of equal employment rights, pay and the role of women in childcare and the home are as current today as they were then. We should not take women’s rights to vote here, or in non-UK locations for granted even in countries we may not expect it. Switzerland granted women the vote only in 1971, and it wasn’t until the 90s in some municipalities. And it is easy to forget that full Parliamentary equality in the UK was not achieved until the Peerages Act of 1963.

Women as MPs, mothers, as managers, all as ordinary citizens need to stay as alert as ever to the equality of rights we have come to expect as the norm, to preserve them and to pass on their worth and relevance to our children. Men need to as well, just as importantly.

Rosamund McNeil, Head of Education and Equality at the NUT told me,

“Sometimes it is taken for granted that women today can have public roles, a life outside the home and can speak for themselves. The suffragettes must be celebrated because it reminds us that change and progress is hard won, and that gains for women must be guarded and not reversed. By looking back, it can generate creativity about how to take forward the debate on women’s inequality. I think their stories can inspire young women today to take control of their lives, to make their voices heard and to defy the stereotypes that remain about what women should say, think and do.”

So are the voices of our young women being included and heard in the current election? The suffragist women campaigned with passion for enfranchisement, for the right to vote and to have woman’s voices heard. One may say today,  to become empowered.

There is a feeling about voting today, that it has lost its power.  Not just for women. As exemplified in Pat Arculus’s story, the feeling that whoever we vote for makes no difference, it’s all the same anyway. Talking to people on the street this week about the European Election on May 22nd, I heard the same things.

Worryingly for me, I’ve found there is an undercurrent of nervous excitement when someone mentions UKIP. In our exchanges in the street, whilst out campaigning to encourage voting participation (of any party) on the European Election, there was a spark in the conversation. People talk openly between each other, of a shake up, of change. Men I spoke with seem quite unconcerned with racism or policy, almost as if acknowledging that there’s a touch of racism and misogyny in all of us, just the ‘real politicians’ are too plastic to let it show. A few men brushed aside hard questions, with a hand flutter of bravado. You get the feeling, there’s almost a hint of ‘at least he’s himself, flaws and all.’

Our respected elder statesmen, have for the most part, left the House of Commons.  We hear staged soundbites and laugh at PR gaffes. But is this to the detriment of politics seeming real? Has spin created an image of politics so worried about what it looks like in the press (5), that to the people it looks like nothing we can connect with or trust? So afraid of making a mistake, that can be exploited by the other side, that the leaders have forgotton who they really are at heart and why we should trust in them?

I feel it is this, which women in England feel disaffected by, why politics seems like a man’s game. But both men and women appear to feel disenfranchised, that mainstream parties are too similar, and anyway, ‘they’re all politicians’. 72% of adults surveyed by Ipsos Mori last June felt in general MPs could not be trusted to tell the truth (10). We don’t trust most politicians, we can’t be bothered with all the game playing and word play behind ceremony and late night debates with party political point scoring. We’ve too much else to do with family, work, volunteering and caring, and everything else women take on and juggle. That’s the impression and sentiments I have been given listening on the street to the middle aged and younger voters.

The risk is, through lack of political involvement we disempower our voice. It is even harder to influence politics from outside. The broader risk is, we also see women falling away from the polling booths as was reflected in some of the women I spoke to this week, who either weren’t aware of the election or did not plan to vote on May 22nd. Political apathy leads to electoral apathy as well.

We also risk passing on that disinterest and lack of knowledge to our children.  As one 17 year old girl told me when I asked how they would feel about voting in the next General Election,

“I don’t know anything about it. I don’t think it matters what you vote for, so I don’t think I would. I thought Tony Blair was Prime Minister till someone told me last week he’d changed.”

Her friend added,

“It’s quite exciting though. Seeing as we would be allowed to (vote) for the first time.”

I’d like to think that spark of excitement, could be spread, and underpinned by some conscious thought, to make a difference in the future. But surrounded by friends or family who are apathetic, without encouragement, it is likely to be put out.

Women who choose not to vote run the risk that we will enable men with the hints of the Farage to become empowered through our inaction.  I’m not saying all men, and all women, revealed this split in  tendencies by any means. Or that support of any party is gender based. But it was a noticeable enough trend in a spread of white, middle class Sussex adults whom I spoke with this week.

As it appears manstream parties which have become ever closer together are not representing the views of many people and are not to be trusted, people are looking at the outer wings of the political spectrum, and looking to people who may be imperfect, but look and sound real.

Overall, people just want a decent life in which people get on, are safe, thrive and look out for one another. Most people, like society to be inclusive. That’s what I picked up in a the majority of opinions. But they don’t appear to believe that common sensed approach is well enough represented in politics. Because party politics skews it.

Just talking to people, it appears a common thread that when it feels that manifestos are meaningless especially in coalition (6), people fail to trust them and the parties who propose them. Unable to be convinced by policies, they are instead attracted to people they believe in. We need people with whom the disenchanted can connect in a sensible way without having to reach out to the extreme margins of politics. We need policies and politicians we can trust. We need genuine, passionate people we can believe in.

We need to see that there is value in our vote and see a need to use it wisely.

As the Rt Hon the Baroness D’Souza reiterated in a presentation (7) last autumn,

“political engagement is not a luxury which can be tacked on to society, once it is sufficiently developed. It is a basic human right which affects our lives and livelihoods.”

You could argue that where people’s priorities are simply subsistence and survival, political empowerment is low on their agenda. Standing up for political and electoral involvement should not be a luxury in the UK, where we might believe developmental barriers do not stand in our way to political engagement. But there are many families and individuals in this country for whom economic security or access to further education are not a given.  Government policies which undermine  either for any parts of society, risk not only harming parity of esteem, but risk undermining the opportunities for full & equal access to involvement in political engagement,  which undermines basic democracy.

The electoral commission, identified (8) that those suffering from social deprivation tend to also be the most politically excluded in society and political disengagement can itself be a form of social exclusion.

A basic lack of trust in our elected representatives, is a sad state of affairs. Combined with a lack of knowledge,  a cynicism about politics is shaping politics in ways which mainstream parties should be taking seriously and acting upon.

According to an Ipsos MORI poll in December 2013, 77% of adults asked agree that they know less about the issues in a European Parliamentary Election than at a General Election. (9)

“Public cynicism with politics is nothing new, but it looks like it has become entrenched.  Disenchantment with politicians is shared across supporters of all parties – but is noticeably higher among UKIP voters, who seem most unhappy with the current political scene.” (Ipsos MORI 10)

It might not be sweet in reality to become actively, politically  involved, like Disney’s Mrs. Banks would have us believe of the suffragettes, but we need to remember their ‘Deeds not Words’ of the past. We need to remember why it is still necessary today. And we need to encourage our friends, family and daughters to remember Emily and all the ordinary women who made a difference, so that we may have the choice to vote as a right, one which they had to fight for.

No matter how disenchanted we feel, we are no longer  disenfranchised unless by choice. Women, get out and vote.  Get electorally involved at least. Remember what others sacrificed for us to be able to do so. Well done  sister suffragette!

If the majority of the population don’t vote, we shouldn’t be surprised if the collective majority opinion, is less represented than it should be. That allows the extreme views, over representation.

We need our collective engagement just as much today, as a hundred years ago.

____

Refs:

1. Votes for Women Open lecture slides by Dr. Mari Takayanagi

2. British Pathe – Emily Davison and the Derby

3. BBC bitesize history of the Suffrage movement

4. Dr. Mari Takayanagi full lecture notes

5. Rebranding ed Miliband – The Guardian April 2nd 2014,  Krishnan Guru-Murthy, Michael White, Lauren Cochrane, Lance Price and David Schneider

6. Defending the Coalition will cost the Lib Dems letter from Social Liberal Forum, August 2013

7. Towards Political engagement for women Rt Hon the Baroness D’Souza presentation Nov 2013, Parliament Week 2013

8. Social exclusion and political engagement Research report by the Electoral Commission – Nov 2005

9. Ipsos MORI December 2013 poll. Ipsos MORI interviewed a representative sample of 1,286 adults aged 18+ across Great Britain.

10. Ipsos MORI 2013 Trust in MPs poll, Ipsos MORI interviewed a representative sample of 1,023 adults aged 18+ across Great Britain. Data are weighted to match the profile of the population.