Skeletons in Uni’s glass cupboard, Council pushing people into residential care, Concerns in Queens Speech, Orange nightmare

My son George was at our house playing with his two year old son Isaac and mentioned that it had been awhile since we’d done anything together, just the two of us. (He’s 33 by the way!) So after a little thought, and as we both love cricket, I agreed to try and get tickets to watch England play the South Africans at the Kia Oval in July. I set about using the online booking service. I went through a relatively straightforward but somewhat time consuming activity to register and then book. It was only at the end of the whole process that I was informed that I couldn’t reserve a wheelchair space on line. I was directed to a telephone helpline which I duly rang. I was then told that the line was closed because it was a Sunday. Once I’d calmed down I gave this process a little more thought.

First why didn’t the website ask the question about wheelchair seating right at the beginning of the process? Second and perhaps more worrying, all the cricket lovers who do not require wheelchair access can book online on a Sunday only wheelchair users are excluded. I believe this to be discriminatory. Surely it is possible in this day and age for Surrey Cricket Club to ensure that wheelchair using customers can book on a Sunday via the telephone? I can by cricket gloves, cricket bats and floppy hats on a Sunday but not it seems, test match tickets
News Round Up

In this article:
University defends display of disabled icon’s skeleton in glass case
Anger as council plans to push disabled people into residential care
Queen’s speech: Government ‘fails to understand’ need for care funding reform
Queen’s speech: Campaigners await details of coalition’s ‘inclusion bias’ plans
Disabled shopper’s Orange nightmare
University defends display of disabled icon’s skeleton in glass case

A London university has defended its decision to continue to display the bones of one of the nineteenth century’s most iconic disabled figures in a private museum.

The skeleton of Joseph Merrick is kept in a glass exhibition case by Queen Mary, University of London (QMUL), more than 100 years after he died.

One disabled campaigner has called for him to be finally given the burial he deserves, only days after there were new calls for a permanent memorial to Merrick in his home town of Leicester.

Jeanette Sitton, the disabled founder of The Friends of Joseph Carey Merrick, said she believed Merrick’s body should be laid to rest, and added: “He is still on display for all the medical students to gawp at.”

Last December, there were similar calls for the skeleton of Charles Byrne, an Irish man who died in 1783 and was seven feet seven inches tall, to be removed from the Royal College of Surgeons’ (RCS) Hunterian museum in London, and given the burial at sea he had reportedly wanted.

Merrick spent his final years at the London Hospital, but after his funeral his body was handed to the hospital under the Anatomy Act, and was not reclaimed for burial by his family or friends.

It is believed that his organs and “remaining soft tissue” were buried in an unknown location, while his bones were eventually passed to QMUL following the university’s merger with London Hospital Medical College in 1995.

A QMUL spokeswoman said they understood from a book, The True Story of The Elephant Man, that Merrick was “expecting to be preserved after his death”, while she said the university “regularly consults” with his descendants over the care of his remains.

The skeleton is now kept in the Doniach Gallery, a teaching section of the pathology collection at QMUL’s Whitechapel campus, and is displayed alongside other medical “specimens”.

The QMUL spokeswoman said the gallery was “not accessible to the general public” and was open only to “supervised medical students and medical professionals by appointment only”, with each request considered by the curator.

She said: “The skeleton is displayed in a glass cabinet to allow medical students to view and understand the physical deformities resulting from Joseph Merrick’s condition. Those viewing the skeleton are also expected to consider Merrick’s feelings on his condition.”

She said the skeleton was “considered valuable for medical research”, the same reason given by the RCS for continuing to display the skeleton of Charles Byrne.

Merrick’s story was popularised by the Oscar-nominated film The Elephant Man, released more than 30 years ago.

This week, the mayor of Leicester – the city where Merrick was born and brought up – called for a new informative memorial, as part of a “Story of Leicester” project that aims to raise awareness of the city’s rich history.

The mayor, Peter Soulsby, said that Merrick “deserves to be remembered”, and added: “The story of Joseph Merrick is an important part of the history of Leicester and his story addresses important issues about society’s changing attitudes to disability.”

There is already a blue plaque, which has now been placed on the wall of a Leicester college, on the site of a workhouse where Merrick lived for four years, and which pays tribute to “a true model of bravery and dignity”.

Sitton said she would also like to see a more significant, permanent memorial to someone who demonstrated such “dignity and courage” and was “a great iconic person for people with disabilities”.

Merrick, who died in 1890, aged 27, had a condition that caused extensive growths on his face and body.

In his short autobiography, he describes running away from home two or three times following the death of his beloved mother – who was also disabled – and the remarriage of his father.

He left school at 11 or 12 but found it increasingly difficult to secure paid work as he became more disabled.

He wrote: “Being unable to get employment my father got me a pedlar’s license to hawk the town, but being deformed, people would not come to the door to buy my wares.

“In consequence of my ill luck my life was again made a misery to me, so that I again ran away and went hawking on my own account, but my deformity had grown to such an extent, so that I could not move about the town without having a crowd of people gather around me.”

He eventually spent four years in a workhouse, before contacting a Leicester entrepreneur to suggest that he be exhibited to the public.

He was nicknamed The Elephant Man and was reportedly well paid, touring in the Midlands and being exhibited in a shop in London.

After being robbed and abandoned while on a tour of Europe, he found his way back to London, where he was taken in by surgeon Frederick Treves and allowed to stay at the London Hospital (now the Royal London Hospital) until his death.
Anger as council plans to push disabled people into residential care

A cost-cutting local authority is set to force more disabled people into residential care, rather than paying for them to receive support in their own homes.

Disabled activists have reacted furiously to the proposals by Worcestershire County Council, which are now subject to a three-month consultation and are expected to save £200,000 in the first year.

Under the plans, new service-users – or existing service-users whose needs change – who have a support package where the costs exceed a certain limit will be told to either meet the shortfall themselves, find a cheaper means of support – perhaps by using direct payments – or “receive their care in a residential or nursing home”.

A council spokesman told Disability News Service that “home or community care packages” would be the “most cost effective and appropriate option” in some cases, but he added: “It is about meeting those eligible assessed care needs in the most cost-effective way for everyone who has a call on the council’s budget.”

He denied that the Conservative-run council would be “forcing people into residential homes” and claimed the policy was about “working with service-users to find the most suitable and cost-effective way of meeting their assessed eligible care needs”.

The proposals came as the government’s Queen’s speech appeared to signal further delays to the reform of long-term funding of adult social care, as campaigners such as the disabled peers Baroness [Jane] Campbell and Lord [Colin] Low warned that the system was “chronically under-funded”.

Linda Burnip, a steering group member of Disabled People Against Cuts (DPAC), said the council’s proposals were “totally unacceptable”.

She said: “If any single council can get away with this sort of thing, it will just cause a domino effect and all councils will try and do it.

“It is totally against the UN Convention [on the Rights of Persons with Disabilities] and the rights of disabled people.”

In a joint statement, DPAC and the Social Work Action Network said the plans would see the “abandonment of a crucial right that disabled people have fought for and won: to be socially included rather than ghettoised or institutionalised”.

They said there was “no possible justification for this kind of social policy which is prepared to sacrifice quality of life and people’s rights at the altar of ‘current financial challenges’”.

Sue Bott, director of development and lead on co-production for Disability Rights UK, said the proposals were “a very real threat to disabled people”.

She said there now seemed to be a “free-for-all”, with councils taking ever harsher steps to cut spending on support, and no sign of any government action to stop them.

Councillor Philip Gretton, the council’s cabinet member with responsibility for adult social care, said it was a “difficult proposal” but had to be “viewed in the context of the current financial challenges we face”.
Queen’s speech: Government ‘fails to understand’ need for care funding reform

Campaigners have questioned the government’s commitment to supporting disabled adults, after it failed to offer any sign that reform of the funding of adult social care was imminent.

The coalition announced in this week’s Queen’s speech, which marks the beginning of the new parliamentary session, that it would bring forward a draft bill “to modernise adult care and support in England”.

The draft care and support bill will follow the publication of a long-awaited care and support white paper, which was due to be published by Easter, but is now expected later this month.

But the Department of Health (DH) confirmed this week that the white paper will not include any proposals on funding reform. Instead, it intends to publish a “progress report” on funding, alongside the white paper.

Sue Bott, director of development and lead on co-production for Disability Rights UK, said the government’s failure was “extremely worrying” and suggested that the reform process was now “back at square one”.

She said the process now “feels like a complete mess”, and added: “What the government is proposing in the draft bill – if it ever appears – will not be the answer if it doesn’t say anything about resources.”

She called for a “completely fresh look at how the support needs of disabled people are going to be met”.

She said: “This is a group of people who are facing more and more cutbacks. What we are hearing every day is that people are being required to live really quite impossible lives.

“What do we have to do to get people in government to understand what is happening to people on a day-to-day basis?”

Linda Burnip, a member of the steering group of Disabled People Against Cuts, said: “The whole situation with care and support is getting worse and worse.

“We argue that social care funding should be like health funding: it should be paid for through taxation.”

Henrietta Doyle, Inclusion London’s policy officer, said they feared the issue could be “kicked into the long grass again”.

She said: “Without reform of funding and adequately funded social care, no real change is possible.”

Last year, Andrew Dilnot’s Commission on Funding of Care and Support concluded that the current system was “not fit for purpose” and was “confusing, unfair and unsustainable” and needed “additional resources” from the government.

Among its proposals, it suggested free care for all people with “eligible” needs who become disabled before the age of 40, although it didn’t suggest what level of care this would provide.

The draft care and support bill will include the government’s response to last year’s report by the Law Commission on the reform of adult social care law.

DH said in a written briefing that the draft bill would “provide greater clarity and equity of access to care and support”, build on progress with personal budgets and modernise social care law, but it made no mention of funding reform.

In the lead-up to the Queen’s speech, the disabled crossbench peers Baroness [Jane] Campbell and Lord [Colin] Low, and Liz Sayce from Disability Rights UK, were among 85 peers, charity bosses, unions and other organisations who wrote an open letter to the prime minister, calling on him to take forward reform as his “legacy to future generations” and warning that the system was “chronically under-funded”.

Disability News Service has been reporting concerns since last July that the government appeared to have abandoned any plans to include funding reform in the white paper.
Queen’s speech: Campaigners await details of coalition’s ‘inclusion bias’ plans

The government is to push ahead with special educational needs (SEN) reform, but has yet to say if it will follow through on threats to reduce disabled children’s rights to be educated in mainstream schools.

The coalition announced in this week’s Queen’s speech – which marks the beginning of a new parliamentary session – that it intended to introduce a new children and families bill.

The bill, expected early in 2013, will introduce a “single, simpler assessment process” and new education, health and care plans for disabled children and young people and those with SEN up to the age of 25.

Every individual or family with an education, health and care plan will have the right for it to be delivered through a personal budget, giving them control over how they spend the money.

If parents disagree with their local authority over a child’s support at school, they will have to use mediation before appealing, while the government says it will also trial a new right to appeal for children unhappy with their support.

But there was no mention of the coalition’s pledge to “remove the bias towards inclusion” in disabled children’s education, a promise which has sparked anger and protests by disabled activists.

The government published its SEN green paper last year, with a public consultation ending in June. Its much-delayed response to that consultation – which will include a detailed timetable for its reforms to the SEN system in England – is expected next week.

Some green paper measures were welcomed last year, but disabled activists warned that plans to reduce parents’ rights to have their disabled children educated in mainstream schools – and remove the so-called “bias towards inclusion” – would set the fight for inclusive education back 20 years.

Henrietta Doyle, Inclusion London’s policy officer, said they were “very concerned” about the government’s plans to roll back progress on inclusive education.

She said the government’s failure to mention any such measures in the Queen’s speech or a subsequent briefing document could mean they had responded positively to concerns raised during the consultation, or that they were just not being “explicit” about their plans.

Sarah Teather, the Liberal Democrat children’s minister, said the SEN reforms would give parents “real choice” and would join up health, education and social care services.

She said it was “unacceptable” that parents were forced to “spend so much time going from pillar to post just to get the basic support their children need”.

The Alliance for Inclusive Education (ALLFIE) warned last autumn that proposals in the green paper would create “many more hurdles” for parents to overcome in finding a school and securing an assessment of their children’s needs and funding for support, and would provide fewer opportunities for challenging the system.

ALLFIE also warned that introducing a single education, health and care plan to replace a statement of SEN could expose disabled children to the same restrictions on eligibility that are faced by disabled adults trying to secure council-funded care and support.

With many local authorities restricting care services to those with “critical” needs, it said last year, support for disabled learners could become “even more of a postcode lottery”.


Disabled shopper’s Orange nightmare

A disabled woman was tackled to the floor by a security guard after she complained about not being allowed to return her new mobile phone, only minutes after signing the contract.

The woman, who has cerebral palsy and scoliosis, but has asked not to be identified, was held by the security guard on the floor of the Orange store in the south of England.

After signing the 24-month, £52-a-month contract, she had told store staff on Tuesday morning that she couldn’t switch the Galaxy phone on, and asked for the instruction manual.

When she was told manuals were only available on the internet, she became distressed and said the phone would not be suitable for her because she had no internet connection.

The member of staff offered to go through the phone’s functions with her, but she said that – because of her impairment – she needed a manual to refer to if she forgot how the phone worked.

She asked the store to cancel and return her contract – which she said was her legal right – but the member of staff refused to hand it over or let her speak to an Orange manager on the phone.

He then called the shopping centre’s security guard when the woman – who is less than five feet tall – became increasingly distressed and tried to retrieve the contract herself from behind the counter.

She said she told the store staff that she was “mentally distressed” and “couldn’t understand why no-one was listening to me”.

Even though she warned the security guard that she had a physical impairment, he grabbed her and dragged her from behind the counter, where she was kneeling on the floor.

After a brief tussle, he held her on the floor, forcing her arm up behind her back, even though she told him it was hurting. She said she also found it difficult to breathe because her hat was partly over her face.

She was left bruised, bleeding, severely distressed and with her legs in spasm.

The store called the police, who escorted her as she was wheeled on a stretcher through the shopping centre to a waiting ambulance, and then driven to hospital.

She said she was briefly arrested and then de-arrested by a police officer.

She said: “I didn’t understand what was happening to me. I just feel completely traumatised and unsafe.

“Here I am doing my shopping and I have never been arrested. I have been on all these [disability rights] demos and I have never been arrested.”

Julie Newman, acting chair of the UK Disabled People’s Council, who had spoken on the phone to the woman when she was in the store, said there had been a “blatant disregard for taking what a disabled person is saying seriously”.

She said: “They knew there was another person who was aware of the situation and it didn’t stop them. I am quite shocked about that, but I am not completely surprised because this is not a new experience for disabled people.”

Newman said she wondered how many such incidents were going unreported by disabled people who lacked support in their dealings with the service industry.

She added: “It was a complete mis-selling, and more importantly a mishandling of the situation.”

A police spokeswoman said: “We have no record of her being arrested – we were called by the shop to attend and then assisted in putting her in an ambulance where she was taken to the [hospital].”

Orange has so far refused to comment.

News provided by John Pring at www.disabilitynewsservice.com

Author: PhilFriend

Dr Phil Friend (OBE FRSA) himself a wheelchair user, is acknowledged as the UK's foremost consultant on disability matters. A powerful and highly popular communicator, his company – Phil & Friends – provides consultancy to many of the country's best-known companies. In addition to his professional activities, he is also a respected champion for equal opportunities and diversity in general, where his special blend of humour and direct speaking has won admirers from around the world.

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