Crippen researches the Queen’s ‘hidden’ cousins

Whilst doing research for a project about the history of disability I came across an interesting fact about the Royal family, in particular about the Queen’s cousins.

Mystery surrounds the lives of Nerissa and Katherine Bowes-Lyon, who were admitted to, ironically, the ‘Royal’ Earlswood Hospital, a mental institution in Redhill, Surrey, in 1941. Nerissa was aged 22, and Katherine was only 15 years old.

They were the respective third and fifth daughters of John and Fenella Bowes-Lyon. John was the elder brother of Queen Elizabeth, who later became known as the Queen Mother.

Nerissa and then Katherine were apparently born with severe learning difficulties. The pair were not encouraged to talk or participate in family gatherings and were officially classed as “imbeciles” by the time they were admitted to Earlswood. 

According to a Channel 4 documentary about the sisters in 2011, they had, to all intents and purposes, been abandoned by their family. There is no record of either woman ever receiving a family visit, nor receiving a birthday or Christmas card, according to the programme. 

In 1963, the family’s entry in Burke’s Peerage registered that both daughters were dead – when in fact they were both still alive and living at Earlswood.

Earlswood was not a happy place. Nurses and relatives of former inmates, interviewed as part of the CH4 programme, recalled an institution that was regimented and had wards of 40 patients. Each ward had just two nurses allocated. “You gave them a bath, cut their nails, fed them if they needed help,” one former nurse said.

Nerissa died aged 66 in 1986 and was buried in Redhill Cemetery. According to The Telegraph, only hospital staff attended her funeral and her grave was marked with plastic tags and a serial number. 

Having spent 72 years of her life in institutionalised care, Katherine managed to outlive her sister by a further 28 years and died in 2014 aged 87.

Description for those people using screen reading software

A gravestone stands in a mound of grass. On it is the inscription ‘In memory of Nerissa and Katherine Bowes-Lyon conveniently forgotten by their family for most of their lives’.

Crippen – DWP again refuses to publish information from secret reviews into benefit-related deaths

Back in October 2014 The Disability News Service (DNS) revealed the existence of secret Department of Works and Pensions (DWP) reviews into suicides and other deaths and serious incidents.

Most, although not all, of the reviews involve the deaths of claimants, while some examine serious incidents that did not lead to a claimant dying.

After the DWP refused to release the reports in 2014, the information rights tribunal ruled in April 2016 that all information from the reviews that does not directly relate to the people who died should be released under the Freedom of Information Act.

The DWP had argued at the time that it was prevented from releasing the information by section 123 of the Social Security Administration Act 1992. This states that a civil servant is guilty of a criminal offence by disclosing “without lawful authority any information which he acquired in the course of his employment and which relates to a particular person”.

That argument was squashed by the tribunal, which said the department could release some information from the reviews, as long as it did not relate to individual claimants.

This led to the release of 49 redacted documents which revealed how the secret reviews had led to recommendations for improvements by the department after the deaths of claimants.

And so, we come to the present time where once again the DWP are refusing to release the information from reports completed over the last 20 months. This is just the latest attempt by ministers to hide information that links the department with the deaths of disabled claimants of benefits such as employment and support allowance and personal independence payment (PIP).

The Department has told DNS, in a response to another freedom of information request, that it cannot release any information from internal process reviews (IPRs) completed between April 2019 and last month because (and lo and behold they’ve come up with a new reason!) it is exempt from its duty to release the documents because every one of those documents is linked to the development of new government policy – under section 35(1)(a) of the Freedom of Information Act.

But there will be suspicions that the refusal to release the documents is because DWP is anxious to avoid revealing any further evidence linking it with safeguarding failures that have led to the deaths of claimants.

Description of cartoon for those using screen reading software

A corridor with two adjacent doors in it, one labelled ‘Department for Works and Pensions’ and the other saying ‘Department of Excuses’. Between the doors, the wall has been knocked out and a man in a high-vis tabbard and wearing a hard hat can be seen through the gap. A red warning sign saying ‘caution demolition’ is placed in the gap. Standing in the corridor adjacent the DWP door is Teresa Coffey and standing adjacent the Dept for Excuses door is a civil servant in a grey suit. He is also holding a piece of paper with ‘excuses for benefit deaths’ printed upon it. He is handing it to Ms Coffey. He is also saying to her: “You’ve used us so many times, it seems easier to knock both of our departments into one!”

Crippen reports on yet another death attributed to DWP policy

And still it goes on. Despite being accused of causing the deaths of disabled benefit claimants by awarding the assessment process to callous private sector contractors, the Department for Works and Pensions (DWP) is faced yet again with the accusation that they were “directly implicated” in the death of another disabled person.

Philippa Day (27) appears to have killed herself after hearing hours earlier that her repeated pleas for her personal independence payment (PIP) assessment to be held in her own home had been rejected.

Philippa had agoraphobia, which is a fear of being in situations where escape might be difficult or that help wouldn’t be available if things go wrong. Many people assume agoraphobia is simply a fear of open spaces, but it’s actually a more complex condition.

Her death is the latest in a long line of tragedies linked to the failings of DWP and its private sector contractors and follows years of repeated promises by the department to learn from the deaths of other disabled benefit claimants.

Her sister, Imogen, told Disability News Service that months before she died, Philippa’s benefits had been slashed when she tried to move from disability living allowance (DLA) to personal independence payment (PIP), and she began to experience significant financial problems as her life spiralled out of control.

Mental health professionals who worked with her had told both DWP and its private sector assessment contractors Capita of the risk to her life caused by the problems with her PIP claim.

She had requested a home assessment in two PIP claim forms – one of which was lost by DWP – and in a phone call to Capita, with her community psychiatric nurse also twice calling Capita to say that she needed to be assessed at home because of her significant mental distress.

She appears to have taken her own life after receiving a letter telling her that she would not be allowed a home assessment and would instead have to visit a Capita assessment centre to test if she was eligible for PIP.

Shortly after her death, about £4,000 in PIP arrears was deposited by DWP in Philippa’s bank account without warning.

Description of cartoon for those using screen reading software

A young white male is sat at a desk and is wearing a hands free telephone unit comprising of boom mike and earphone. He is holding a PIP application. In front of him are two paper trays. The one marked ‘failed’ is full of PIP application forms whereas the one marked ‘passed’ is empty. On the wall behind him is a sign that reads ‘Capita assessment unit’. He is saying to the person on his phone: “Listen, I don’t care if she has died – if she’s not here for her appointment she loses her benefits!”

Crippen hears that charities have called on Government to prioritise those who are more vulnerable to the virus

Three ‘disability’ charities have called on the Government to ensure that disabled people, including those with learning difficulties and autism, as well as their families and support workers, receive prioritisation for the new COVID-19 vaccination.

The call from Mencap, Sense and the National Autistic Society, is in response to interim advice from the Joint Committee on Vaccination and Immunisation (JCVI), which the Government are using to steer their approach to vaccination. The advice is heavily biased towards older people aged 65 or over, and they feel does not give sufficient prioritisation to disabled people.

Last week, Public Health revealed that COVID-19 deaths for people with a learning disability in England are six times the average.  The review found that those aged 18-34 with a learning disability were 30 times more likely to die with the virus than their counterparts in the general population.

According to the Office for National Statistics published in September, 59% of all deaths involving COVID-19 from March 2 to July 14 were of disabled people.

Richard Kramer, Chief Executive of Sense, said: “The needs of disabled people have been consistently forgotten by Government and this can’t continue as we look to find a way out of the pandemic.”

This was echoed by Edel Harris, Chief Executive of Mencap, who said:

“People with a learning disability have experienced shocking discrimination during the pandemic. They have been subjected to blanket ‘Do Not Resuscitate’ notices, refused admittance to hospital and left in lockdown long after everyone else.”  

And Caroline Stevens, Chief Executive of the National Autistic Society, stated: “Our research shows the pandemic has left people with Autism and their families stranded.”

Description of cartoon for those using screen reading software

Two figures in lab coats and wearing PPE are stood in the Covid 19 Research Laboratory. Behind them are three disabled people, two with Downs Syndrome and another with Autism Rules on his top. One of the Lab technicians has just noticed them and is saying: “You know you said that we needed some guinea pigs!”

Crippen and the surgeon who hops to it after losing his own legs

Having worked so hard at challenging the ‘tragic but brave’ stereotype of disability, it still persists, although this time with a rather ironic twist.

A surgeon who carried out hundreds of amputations before losing both of his own legs has accepted an award for being one of the bravest people in Britain at the Amplifon Awards for Brave Britons 2020. Although he has redeemed himself by launching a one-man mission to improve after-care for fellow amputees in the South West of England.

Dr Neil Hopper, a vascular surgeon from Cornwall who lost both his legs after developing sepsis after a camping trip with his children last April, has returned to work at the Royal Cornwall Hospital at Treliske in Truro with a mission.

Dr Hopper who has performed hundreds of amputations, spoke to Cornwall Live about his bid to improve post-hospital support and care for fellow amputee patients after his own experience. Specifically, he’s fighting for better care for amputee patients after they leave hospital.

He said: “…if they were cancer patients, the lack of support would be seen as a national disgrace!”

Dr Hopper added:

“The thing that made me worry was that I was getting the red carpet treatment. People were bending over backwards for me, a colleague, so I started imagining what it would be like for other patients.”

He added: “The thing I think we can easily change is that eight weeks between leaving hospital and getting legs. That’s the black hole nobody really thinks about. It’s fair to say we’ve spent decades improving amputee care in hospital. We’ve got that bit right now, but it’s that next bit that doesn’t seem to be as good.”

Changes have already been made thanks to Dr Hopper’s determination and you can read about these in the full Cornwall Live article.

Description of cartoon for those using screen reading software

Dr Hopper, wearing a rabbit costume, is seen ‘hopping’ down a hospital corridor on prosthetic blades. A voice from a speaker on the wall is saying: “Dr Hopper please bravely hop down to Theatre C.”

Crippen looks back 25 years to his cartoons of that era

As you’ll have seen, there’s been a lot of talk about it being 25 years since the launch of the Disability Discrimination Act 1995. I was even persuaded by our over-worked Editor Colin to throw in my own two-penny worth (that’s old money to you youngsters out there!) with an article about the event.

The impact it’s had on me, however, has been to have a quite a few requests from various people to use the cartoons that I created at the time. Unfortunately, these ‘toons were drawn back in the dark ages when black and white imagery was the norm, with an equally low resolution mainly for the printed page. These were created at the time for such publications as Disability Arts In London (DAIL) magazine and the newsletter of the Trades Union Disability Alliance (TUDA News). I now create in colour with a much higher resolution more suited to t’ tinternet.

A couple of the organisations that requested permission to use the cartoons, like the BBC, have in fact, gone ahead and used them despite the poor quality. This has left me with mixed feelings, as these old images don’t really represent the Crippen that has evolved, if you see what I mean.

The two cartoons that have been requested the most have been the one with two vicious looking dogs, representing employers and service providers confronting a little puppy identified as disabled people. As you’ll see, I’ve recreated that one for the DDA article I mentioned earlier. The other one was a cartoon of a young female wheelchair user encased in a box with just her head showing out of the top. She’s saying to a companion: “When I realised that they treated the mail with more respect, I decided to travel as a parcel!”

So, here’s that one, recreated for this blog posting, but this time in glorious colour. And who knows, maybe in another 25 years, this image will be considered outdated?

Keep safe.

Description of cartoon for those using screen reading software

A young female wheelchair user is traveling inside of an old style train’s guard’s van. She is encased in a large box with just her head showing out of the top. She is saying to a companion: “When I realised that they treated the mail with more respect, I decided to travel as a parcel!”

Crippen revisits the subject of disability hate crime

This is the second year running that the National Police Chief’s Council (NPCC) has refused to provide any explanation for why police forces are passing significantly fewer cases of disability hate crime to the Crown Prosecution Service (CPS).

The number of disability hate crime cases referred to prosecutors by police forces has now fallen for the fifth year in a row, and it is now only about a third of the level it was in 2014-15 (924 cases).

The Home Office has also refused to offer any explanation for the fall, or to say if it was due to a fall in police numbers, or even if it was concerned about the issue.

This week, an NPCC spokesperson refused to answer questions put to them by the Disability News Service (DNS) about the figures, other than cutting and pasting answers his office had produced in response to completely different hate crime figures obtained by a charity earlier this month (Ed: figures!).

Disabled members of the Disability Hate Crime Network this week expressed alarm at the police failings.

Sue Groves, chair of Medway Independent Police Advisory Group and an independent critical incident advisor to Kent Police, said the drop in police referrals to CPS was “very worrying and will only serve to increase the concerns victims of disability hate crime have around reporting incidents to the police that they will receive an appropriate response”.

Sue was herself a victim of a disability hate crime, in London, and the four-week delay before it was investigated as a hate crime – after originally being told by the Metropolitan police that it was “just an on-street altercation” – meant any CCTV evidence was no longer available and the investigation failed to progress.

She said: “I have been able to use this experience to feed into improvements within Kent Police, but others are not so fortunate, and thus there is a desperate need for a concerted national push to ensure all disability hate crime reports are correctly flagged from the outset …”

Another disabled network member, David Gillon, said he was particularly concerned by reports that some officers were removing the “tags” or markers that show that offenses should be treated as disability hate crimes, which he said not only affects those cases but also “potentially distorts the statistics about how common this is, and the margin of police failure”.

You can read the full report in Disability News Service.

Description of cartoon for those using screen reading software

A white shaven headed thug in a bright red tracksuit is grabbing the shirt of a young black guy and is lifting him off of his feet. The young guy is holding a clipboard with survey written upon it and a broken crutch lies at his feet. He’s saying to the thug: “Final question Sir – do you hate me because I’m Black, disabled or Gay?!”

Crippen hears about people with Autism experiencing undignified and inhuman care

Once again, it has fallen to the Disability News Service (DNS) to expose how disabled people are still being treated throughout mental health units in England.

You’d be forgiven for thinking that we still lived in the middle ages when you read the Care Quality Commission’s (CQC) report into the use of restraint, seclusion and segregation for autistic people and people with learning difficulties and mental health conditions in mental health units in England.

People with Autism have told the care regulator about the “undignified and inhumane” care they have been subjected to in mental health units, including the frequent and traumatising use of segregation and restraint in England.

In the report, Out of Sight – Who Cares?, CQC says it found “too many examples of undignified and inhumane care, in hospital and care settings where people were seen not as individuals but as a condition or a collection of negative behaviours”.

The response to this was often to “restrain, seclude or segregate them”.

DNS tell us that the review calls for “fundamental change in the way care is planned, funded, delivered and monitored”, so it is “underpinned by a firm foundation of human rights”, and restraint, seclusion and segregation “are no longer accepted …”.

Many of those subject to restraint described to CQC its “lasting and traumatising effects”, with one saying about being restrained:

“It makes me feel …dehumanised. I don’t feel like a real human being.”

One patient with autism identified as Alex described how she sought help from mental health services because of a lack of appropriate community care. During an initial 72-hour admission to hospital, she experienced a “catastrophic clash” between her autism and the lighting, noise and chaos of the “box” she was kept in, and quickly became “overloaded”.

In the following months, she was restrained 97 times and secluded 17 times, was forcibly drugged, and her body was left “battered and bruised”, and her identity “fractured”.

She told the review: “They didn’t like the autistic part of me. I tried to tell them that autism is all of me, it’s who I am.

After three-and-a-half years, she was eventually able to flee to Africa where she created a new routine and set up an autism-friendly home, weaned herself off the drugs she was taking, received private treatment from a psychologist, and, after six weeks, started to work as a teacher again.

The key to success, she told the review, “is creating the right environment and treating psychological differences with dignity and respect”.

You can read more about this disturbing report in the Disability News Service article online.

Description of cartoon for those using screen reading software

A young white male is strapped to a reclining chair whilst a white, bald thug in a quasi-uniform is shining a strong light in his face. The thug is holding a hypodermic in his other hand and at his feet is a large box with a skull and cross bones and the words drugs printed on it. On the wall, in the shadows is a sign that says Mental Health Unit. The thug is saying: “We have ways of curing you!”

Crippen hears of funding that will be used to build evidence of DPO crisis

New research will seek crucial evidence of the “serious crisis” facing Disabled People’s Organisations (DPOs) across England.

Inclusion London told the Disability News Service (DNS) that they have secured £80,000 from the National Lottery Community Fund to research the state of England’s “chronically under-resourced, fragmented and precarious” DPO sector.

It will produce proposals for long-term improvements to the regional and national DPO infrastructure and build a “clear picture” of the support the DPO sector needs. The research will also be used as the basis for future funding applications.

The new funding follows calls by DPOs during April’s national conference of the Reclaiming Our Futures Alliance – of which Inclusion London is a member – for more to be done to ensure the voices of disabled people and their user-led organisations are heard at both regional and national levels.

Inclusion London told DNS that about a quarter of DPOs have closed since 2015, while many others are “hanging on by a thread”.

It says that life for disabled people “is getting worse not better”, with “exclusion and discrimination coupled with rising poverty and inequality as a result of austerity, welfare reform and cuts to public services”.

The lack of resources means DPOs cannot carry out vital projects, such as outreach work with disabled people in institutions, developing the skills of its members, and tackling the “systematic exclusion” disabled people face.

Inclusion London warns that it is still “culturally acceptable, indeed the norm, to have non-disabled people representing us with funding disproportionally going to the large disability charities that are not run or controlled by disabled people and do not represent or even amplify our voice”.

To understand just how dire the situation is then please click here to read the full DNS article.

Description of cartoon for those using screen reading software

A white male and a white woman both smartly dressed in business suits are receiving a large sack of cash from Boris Johnson who represents the government. They carry a sign that identifies them as ‘groups for the disabled’. Behind Boris and trying to attract his attention, are two disabled people; a young white woman using a wheelchair and an Asian man who is wearing dark glasses and carries a white stick. They are both looking angry. They are identified by a sign that reads ‘groups of disabled people’. The male charity worker is saying to Boris: “Groups FOR and groups OF – it’s just a matter of semantics don’t you think?!”

Crippen pays tribute to the irreplaceable Sian Vasey

Disabled activists have paid tribute this week to Sian Vasey – a much-loved, “multi-layered activist” who played a “pivotal role” in the disabled people’s movement for more than 40 years – who died last week.

A stream of messages on social media mentioned her contributions as a disabled activist, a pioneering member of the disability arts movement, a BBC producer, a writer, a campaigner on issues such as accessible transport and independent living, and as a Labour party and union activist.

Writing in the Disability News Service (DNS) John Pring comments that many mentioned her wit, her contribution as a role model for other disabled people, and the part she had played in protests as an activist with the Disabled People’s Direct Action Network (DAN) and Not Dead Yet UK (NDY UK).

Mandy Colleran described Sian as “the warrior queen of the disability movement”, and “a role model, a thinker, a leader, an activist, a writer, and a great friend”, and said she was “irreplaceable”.

The DNS article goes on to mention that Sian’s activism with NDY UK often intertwined with her campaigning on independent living.

In November 2014, as NDY UK prepared for its latest protest outside the House of Lords to demonstrate opposition to a bill that sought to legalise assisted suicide, Sian said: “Many of us need support with our daily routine, washing, dressing, continence and going to the loo but this in no way affects our well-being, or diminishes our dignity. We get the help we need, but we have had to fight hard to get it. It is a tragic fact that this is a primary cause of such people wanting to end their lives prematurely.”

Sian was also a member of the pioneering Union of the Physically Impaired Against Segregation (UPIAS) in the 1970s, and played a key role in setting up another pioneering disabled people’s organisation, London Disability Arts Forum. She was later director of Ealing Centre for Independent Living (ECIL) and was awarded an OBE in 2009 for services to disabled people.

Description of cartoon for those using screen reading software

A caricature of Sian sat in her wheelchair with a cheerful smile on her face. She is wearing a dark pink top with blue tights and has a silver bracelet on her right wrist.