Anger over government’s ‘pathetic’ election access report

The government’s response to a consultation on how to make voting more accessible to disabled people has sparked anger among disabled campaigners, after it failed to offer a single new measure to improve access.

One disabled campaigner branded the government’s report “pathetic” while another said the failure to act had made him “really angry”.

The new report includes a summary of about 250 responses to a call for evidence issued by the Cabinet Office 12 months ago, which asked for disabled people’s views on voting and registering to vote.

But of the 17 “actions” suggested by the Cabinet Office in its report, 13 state only that the government will “consider”, “reconsider” or “discuss” taking certain actions, including asking advisers to consider what outreach services could be provided to support disabled people in care homes to vote.

Another action is “to continue to consider the needs of disabled people when implementing changes to election or electoral registration processes”.

Of the four that are not just considering further action, two call for the promotion of existing guidance or the use of existing equipment, one is to ensure effective training of polling station staff, and the other is a call for a review of existing guidance.

Graham Kirwan, who was forced to take legal action against his local council over its failure to make the process of registering to vote and voting accessible to him as a visually-impaired person, said the government’s failure to act made him “really angry”.

Among the barriers he faces are that his local authority refuses to send him his voting information via email, rather than in the post, and fails to provide CCTV magnification equipment at his polling station that would allow him to read information about the candidates (the large print information available is not large enough for him to read).

Even if magnification equipment was available, the tactile voting device used in polling stations is not fit for purpose, he says – the government report says others, including the charity RNIB, have made the same point – and so he still would not be able to vote independently and privately.

He is strongly in favour of allowing electronic voting, which he said would make the process far more accessible for him and other blind and visually-impaired people.

But the report appears to rule this out, saying that there were “significant concerns about the security of online voting and increased risk of electoral fraud and providing unproven systems to people who are already vulnerable in terms of engagement and participation would not be helpful”.

Kirwan said this was “unsurprising”.

He is convinced that the government is opposed to electronic voting because it would increase the number of young people voting in elections, and younger people are more likely to vote Labour.

Kirwan said: “The perception is that I should make every single effort I can to go to vote and should give up my right to a private vote if I want to vote that much.

“One of the fundamental pillars of our society is you have that right. It’s not just a vote. It’s a confidential vote.”

Deborah King, co-founder of Disability Politics UK, said the report was “pathetic”.

She said: “The government response shows the huge political inertia which exists in relation to disability and political rights. Kicking the can down the road seems to be the policy.

“The government could develop an online training course on disability and voting rights.

“All staff working in polling stations and electoral services could be required to take the training. The training course could be developed before Christmas.

“The proposal that the Care Quality Commission (CQC) should include [awareness of] voting rights in a CQC assessment can also be implemented promptly. GPs, care homes, hospitals and mental health units should all be assessed on this.”

There was further anger after the minister for the constitution, Chloe Smith, said in promoting the report: “Every voice matters and this government is going to take action to ensure that disabled people have their voices heard.”

This came only days after Disability News Service revealed how Sarah Newton, the minister for disabled people, had refused to meet a coalition of disabled people’s organisations (DPOs) to discuss the UK’s progress in implementing the UN Convention on the Rights of Persons with Disabilities.

Mark Harrison, from the Reclaiming Our Futures Alliance, which is part of the coalition, said he was “astonished and angry” at Smith’s “misleading” comments.

He said: “Her government has ignored the UN, both the inquiry and the concluding observations, and the minister for disabled people has refused to meet UK DPOs.

“Her cynicism and the government’s cynicism know no bounds.”

The Cabinet Office refused to answer a series of questions this week, including whether Newton’s actions meant Smith was wrong to say the government was taking action to ensure disabled people’s voices were heard, and why so little had been done since the Conservative party’s 2017 general election manifesto promised to make the electoral registration process “as accessible as possible so that every voice counts”.

A Cabinet Office spokeswoman also refused to say why the government was apparently ignoring the call by the UN committee on the rights of persons with disabilities last September for the UK to take action to improve access to voting “in close consultation” with DPOs.

There are no DPOs on the government’s accessibility of elections working group, which instead includes several disability charities including Mencap, RNIB, Scope, Rethink and United Response.

The Cabinet Office spokeswoman also failed to say if the government was ruling out electronic voting.

But she said in a statement: “There are already a range of statutory measures in place to support disabled people to vote at elections.

“The evidence received from the call for evidence on access to elections has been analysed in partnership with the government’s expert access to elections working group.

“They have identified a number of actions to be taken forward to improve the voting experience of disabled people.”

The Cabinet Office also said that it had improved the accessibility of the Register to Vote website and was about to introduce an easy read guide on its homepage.

Last year it announced changes to the Certificate of Vision Impairment process, which meant that local authorities could contact someone newly certified with a sight impairment to ask if they needed help or support with registering to vote or voting.

6 September 2018



Government ‘discriminated against DPOs’ in awarding £29m development programme

The equality watchdog is examining claims that the government has discriminated against UK disabled people’s organisations (DPOs) by excluding them from the delivery of a new £29 million international development programme.

The Department for International Development (DFID) has awarded the contract to a consortium of charities and other organisations led by the UK-based disability charity Sightsavers, in a process that DPOs in England and Wales believe has breached the UN Convention on the Rights of Persons with Disabilities (UNCRPD).

The consortium includes the International Disability Alliance (IDA), an international DPO based in the US and Switzerland, and several UK-based international non-governmental organisations (INGOs), but no UK DPOs.

The contract with Sightsavers is worth £29 million over the six years of the programme, while there will be a separate contract for a research programme valued at £7 million which is currently out for tender.

The award of the contract is just the latest in a series of government snubs for the UK’s disabled people’s movement, and its latest apparent breach of the convention.

DPOs have been trying since last year to persuade DFID to change its approach to awarding the contract for the Disability Inclusive Development (DID) programme, which aims to support achieving the 17 Sustainable Development Goals and improve access to areas such as education, jobs, healthcare and address discrimination for disabled people in the global south.

But the Reclaiming Our Futures Alliance (ROFA) – which represents a number of English DPOs – is arguing that DPOs in the UK did not have the resources to bid successfully to be part of the programme and were not supported by DFID to do so.

ROFA believes the criteria for awarding the contract should have included the need to include UK DPOs in the winning consortium.

Following ROFA’s complaints, it believes DFID’s only concession so far has been to promise that DPOs will be part of the programme’s independent advisory group.

DFID is led by international development secretary Penny Mordaunt, a former minister for disabled people.

ROFA has been forced to complain to the Equality and Human Rights Commission (EHRC) and the Independent Commission for Aid Impact, which has already criticised DFID for its approach to disability in development in a report published in May.

Mark Harrison, from ROFA, said: “They have a disability inclusion project with no UK DPOs involved in the delivery. It’s obscene.”

He said they had had support for their concerns from DPOs in the global south.

He said: “DPOs in the south want to work with UK DPOs. They don’t want to work with disability charities because the relationship is unequal and exploitative.”

In an email to DFID earlier this year, ROFA accused the department of being “institutionally disablist”, adding: “The proposals relegate disabled people and DPOs to an ‘advisory role’ to charities FOR disabled people, INGOs [international non-governmental organisations] and the private sector who will receive the funding to deliver the programme.

“This would be like giving all the funding for a women’s equality programme to an organisation run and delivered by men and asking women to sit on the advisory group.”

Disability Wales (DW) has added its voice to the concerns.

Miranda Evans, DW’s policy and programmes manager, said: “I’m completely amazed that Disability Wales and other DPOs across the UK were not involved in the planning and design of such a significant programme aimed at tackling disabled people’s inequality internationally.

“So much for ‘nothing about us, without us’…

“It is extremely concerning that our organisations were not made aware of this important initiative and of the potential opportunity to bid for the contract ourselves in partnership with sister DPOs – organisations run and controlled by disabled people across the UK.”

An EHRC spokeswoman said: “We have received a complaint from Reclaiming Our Futures Alliance and are considering it to see what, if any, action is needed.”

She declined to comment further.

DFID’s failure to act comes just weeks after Mordaunt encouraged other countries at a global disability conference in London to sign a new Charter for Change, which said countries should “strive for real change” by implementing the UN disability convention.

But the convention repeatedly stresses the importance of countries working with their own DPOs on disability rights issues.

Mordaunt also told international delegates to the disability conference: “When disabled people are included, great things happen.”

DFID’s failure to include UK DPOs also comes after a coalition of DPOs criticised the minister for disabled people, Sarah Newton, for refusing to meet them to discuss the UK’s progress in implementing the convention.

ROFA also says that DFID has failed to act since the Commons international development committee called on DFID in April 2014 to “step up its support for disabled people’s organisations” and “ensure disabled people participate fully in the design and delivery of DFID’s own programmes”.

ROFA has written to the committee to raise its concerns, warning that the programme was “flawed in design, excludes disabled people-led organisation in the UK from participating and does not represent good value for money”.

A DFID spokeswoman said: “DFID’s priority is to ensure that we deliver the best results for people with disabilities and the best value for money for DFID’s spend – and we believe that to achieve this goal we must partner with organisations that have demonstrated the greatest expertise, experience, and effectiveness in programme delivery for people with disabilities.

“Therefore, we had an open invitation to tender in line with UK and EU procurement practices, open to all organizations inclusive of both UK and international DPOs.

“We assessed tenders against the criteria of meaningful engagement with people with disabilities.

“People with disabilities will be at the heart of the DID programme.”

She added: “IDA is a global organisation that brings together over 1,100 organisations of persons with disabilities.

“They are the most authoritative representation of persons with disabilities and will ensure people with disabilities are central to the planning and delivery of the programme.

“We believe that the winning consortium will successfully implement the DID programme, and have a meaningful and long-lasting positive impact on the lives people with disabilities in developing countries.”

She said DFID did not accept that it had breached the UN convention and said this suggestion was “not a fair or accurate reflection of the tender process”.

She said the programme had not yet been designed but that DFID was “working with Sightsavers closely to ensure that meaningful participation of people with disabilities and their representative organisations is central to the design, delivery and governance of the programme”.

She said DFID would ensure that the independent advisory group would include “representation from people with disabilities and DPOs”, while DFID would also engage with DPOs in the countries where the programme was expected to operate.

She said that DPOs from countries selected for funding would “play a critical role in the design and delivery of the programme, with IDA managing a stream of work running throughout the programme specifically focused on DPO engagement”.

And the DFID spokeswoman insisted that the department had “stepped up its support” for disabled people and DPOs since the international development committee’s report in 2014.

In addition to DID, she said, its Disability Catalyst Programme provided small grants and technical advice to support disabled people and DPOs to “advocate for changes in policies, legislation and programmes”, while a new small charities challenge fund aimed to address some of the issues small organisations faced in accessing funding.

She said: “We hope DPOs will consider applying where they believe they can deliver development impact.”

6 September 2018.



Campaigners raise thousands in days for #TransportJustice legal fund

A new campaign that will fund legal actions on behalf of disabled people who have faced discrimination on public transport has raised thousands of pounds in just a week.

The #TransportJustice campaign has secured the backing of leading disabled activists and lawyers and is supported by Inclusion London and law firm Deighton Pierce Glynn.

They say that many disabled people find it impossible to challenge discrimination because they cannot afford to employ a solicitor, pay court fees or risk having to pay the costs of the transport body they are taking legal action against.

The new legal fund will be run by Inclusion London’s Disability Justice Project and will pay for legal costs in court cases that campaigners hope will change policy and practice on accessible transport, focusing at first on discrimination in rail and air travel.

The appeal went live on 29 August and is already nearly halfway to its target of £10,000, with three weeks still to go before its deadline.

Svetlana Kotova, coordinator of the Disability Justice Project, said: “The laws protecting us from discrimination on public transport have been around for two decades, and it is a scandal that in this day and age disabled people face so many problems when travelling by public transport

“Many of those problems are not because of inaccessible infrastructure, which is still there, but because of bad policies, the lack of training and the general attitude that it is ok to treat us like second-class customers as if we should be grateful for whatever help we are given.

“Asking and complaining does not work, so it is time we joined forces to enforce the Equality Act through legal action.”

She thanked all those who have already supported the campaign and urged others to continue to contribute to the fund.

She said: “It is left to us to enforce the Equality Act and the fact that we have to raise money to make the law work is a telling example of the problems we have with access to justice.

“It can be risky and costly to take a big company to court. The majority of disabled people are not eligible for public funding, but still cannot afford to take those risks.

“Our fund will help to resolve this problem and will make it easier to bring cases that will change policy and practice.”

Alan Benson, chair of Transport for All, the user-led organisation that campaigns on accessible transport in London, said: Trains and planes are so important to enabling everyone to travel for both leisure and business, yet every single day disabled and older people face an uphill struggle to make journeys that everyone else takes for granted.

“Like many, many others I’ve been delayed, stranded on trains and aircraft and had my wheelchair damaged.

“These are not minor inconveniences but have major impacts on people’s lives.”

He added: “The onus for challenging this appalling situation falls on the victim, but to do so alone is daunting and carries financial risk.

“This campaign is vital to redress this imbalance, to send a strong message to the transport providers that it’s just not good enough.

“It is incumbent on them to make every journey for every disabled and older person run smoothly and this campaign will send the message that they will be held to account until they do this.”

Accessible transport campaigner Doug Paulley is another of those supporting the campaign.

He said: “As a wheelchair-user I travel a lot by public transport and for many years I have been campaigning for its accessibility using different means, including legal action.

“Transport providers have got away with poor treatment of disabled people for far too long, because enforcing the law is so difficult.

“If I’m given food poisoning by a kebab shop, I can report it to environmental health for action.

“If I’m discriminated against by a transport provider, the only way to enforce the law is for me to take individual legal action.

“Such is not easy and has risks; so it is very important that disabled people are given the backing they need to achieve change.”

The need for the campaign has been demonstrated by a fresh string of cases in which disabled people have faced discrimination when trying to use public transport.

Two days after its launch, a disabled woman told The Guardian how she was forced to sit on a train in her wheelchair in the middle of a makeshift buffet service that had been set up in the neighbouring wheelchair space.

The day before the launch of #TransportJustice, wheelchair-user Jane Carter, who tweets at @JaneC4444, described how a mother with a pram refused to move from the wheelchair space on a bus and then “threatened to kick my F in head in” because her baby was asleep, leaving Carter dangerously wedged against the safety bar throughout her journey.

And five days before the launch of #TransportJustice, Paralympian and rights campaigner Anne Wafula Strike – one of those supporting the campaign – was left stranded on a Ryanair flight at Stansted airport for 45 minutes on her return from Berlin.

She said: “I am supporting this initiative because I want to help more disabled people with different impairments and experiences to stand up for what is right, because we all should be treated like human beings.”

She added: “I travel around the country regularly by train. As a wheelchair user, traveling can be a frustrating and sometimes humiliating experience.

“I often face problems with getting on and off trains and not having access to a working toilet.

“Many have heard of a particularly humiliating incident I had when I could not get access to a toilet on the train and had an accident.

“I was so angry and felt like It was the last straw.

“I decided to go public and launch legal action to ensure that nobody else has to go through the same experience.

“I wanted my local rail operator to care about their disabled customers and take their needs seriously.

“I could not start a court case because of the financial risks I would face if the case was lost.

“My case attracted a lot of publicity and got settled without going to court. But I know many disabled people in a similar situation will not be able to stand up for what is right and so transport providers will continue treating us like second class citizens.

“I am determined to ensure this is not the case.”

6 September 2018



Bill on mental capacity and liberty deprivation ‘will take disability rights backwards’

Disabled campaigners say the government must delay a controversial bill they believe would make it easier to restrict the freedom of people in care settings who lack capacity to make their own decisions.

Peers yesterday (Wednesday) began debating the committee stage of the mental capacity (amendment) bill, legislation that will affect an estimated 300,000 people in England and Wales with impairments including dementia, learning difficulties and brain injuries.

The bill would introduce a new system, Liberty Protection Safeguards (LPS), to replace the crisis-ridden Deprivation of Liberty Safeguards (DoLS), for service-users who need to be deprived of their liberty as part of their care but are considered to lack the mental capacity to consent to those arrangements.

The bill is based on recommendations made by the Law Commission but critics say it is “significantly different” from the commission’s own draft bill and omits most of its most progressive elements.

Inclusion London believes the bill as it stands breaches four articles of the UN Convention on the Rights of Persons with Disabilities  (on equal recognition before the law, on liberty and security of the person, on protecting the integrity of the person, and on independent living) and says it is “seriously concerned about the impact this bill will have on the human rights of disabled people”.

It says the bill will “significantly weaken the few existing protections” disabled people currently have and has called for its progress through parliament to be paused to allow people who would be affected by the proposals to respond to the government’s plans.

But it will also be working with other disabled people’s organisations, lawyers and academics to secure amendments to the bill.

Among its concerns are that the legislation would give new powers to arrange deprivation of liberty assessments to care home managers.

An independent assessor would only be asked to carry out a review if the service-user was believed to be objecting to the deprivation of their liberty, and it would be up to the care home manager to decide if that person was objecting.

Inclusion London says it would also be up to that manager to decide if it was in the resident’s best interests to have an advocate to help them challenge the decision.

Similar powers would be given to managers in local authorities, hospitals or NHS clinical commissioning groups when considering LPS for disabled people in other care settings.

Svetlana Kotova, coordinator of Inclusion London’s Disability Justice Project, said: “The bill does not require them to consult with the person concerned, give any weight to their wishes and feelings or even to inform them or their relatives about the decisions that are being made.

“The bill restricts access to independent advocacy and does not improve in any way the person’s ability to challenge decisions that are made about them.”

Inclusion London is now seeking signatures for a letter it plans to send to parliament’s joint committee on human rights to express its concerns about the bill.

Disability Rights UK (DR UK) has also raised concerns about the bill.

Sue Bott, DR UK’s deputy chief executive, said the bill “takes the rights of disabled people backwards”.

She said: “There is nothing more serious for an individual than a decision to deprive them of their liberty yet, as it stands, this bill will make challenging such decisions difficult and costly with little independent oversight and no commitment to taking the views of the individual into account.

“I hope members of the House of Lords will, through amendments, be able to radically improve the bill.”

Among DR UK’s concerns are that the bill makes no provision to provide information on LPS decisions to those who have been detained; will damage access to justice; gives too much power to care home managers; and moves the UK even further away from the UN convention.

Disabled activist Simone Aspis, director of the consultancy Changing Perspectives, who blogged about the bill this week, has also raised concerns about the powers the bill plans to give care home managers.

She said: “As many people lacking capacity have experienced little control over their lives, it is very unlikely that they would simply complain and successfully challenge their LPS approval.

“For example, I know of residents unable to go out during the weekends because of limited staff cover.

“There is clearly a conflict of interest when care home social care budgets are squeezed, [because] managers could use LPS authorisation as a means of forcing residents to accept restrictive care arrangements.”

And she said there was a need for legislation that “promotes and maximises our liberty” rather than a law that focuses on restricting individuals’ liberty.

Howard Gordon, a disabled campaigner who is living with dementia, said he was concerned that the bill – if passed – could be used to force service-users with the condition into institutional care against their will.

He fears that, although not explicit in the legislation, this could happen if someone was an inpatient in hospital and was well enough to be discharged but no appropriate social care was available.

He said in a blog: “In order to free up a bed, the hospital administrator could authorise a Liberty Protection Safeguard against the person and force them into a care home until social care is available, to the detriment of the person, their dementia, their rights and their family.”

He told Disability News Service: “It’s a great concern. I could be in hospital and a hospital administrator could decide that I had to go into a care home.

“It would be a complete abuse of my rights. It takes away my ability to make decisions.

“I have decided I want to live at home and my wife wants me to live at home. I have capacity at this time and that is my decision and I expect that to be respected.”

Peers have already raised concerns about the bill at its second reading in July.

The Liberal Democrat Baroness Barker said the bill was “extremely flawed and deficient” and said there had been “very little consultation”.

She said the government had gone through the Law Commission’s proposals and “selectively picked pieces out of it”.

The crossbench peer Baroness Finlay, who chaired the National Mental Capacity Forum for nearly three years, was more supportive of the bill and said the burden of the current system was “overwhelming”.

She called for the concerns about the bill to be “resolved rapidly”.

Another crossbench peer, Baroness Murphy, raised concerns about “the monstrous piece of bureaucratic machinery that is the deprivation of liberty safeguards”.

She said this had caused “untold harm and cost a huge amount of money that has been diverted from finite clinical and social care budgets at a time when the country can ill afford it, and when the quality of care in hospitals and residential homes is barely adequate and often downright poor”.

But she expressed “surprise and concern that some of the most far-seeing and progressive parts of the draft bill produced by the Law Commission” had been omitted from the government’s bill.

She said she was concerned that the bill would abandon regard for the individual’s wishes and feelings and replace that with what is “necessary and proportionate”.

She said: “These are vague words that may well imply that, in this age of austerity, the person will get care in a way that is convenient for the authorities making the judgment to impose and that does not take account of the individual’s expressed wishes or include a discussion about what they might wish.

“Although ‘best interests’ is mentioned, when the crunch comes, it will be ignored.”

But Lord O’Shaughnessy, a health and social care minister, defended the bill.

He said: “It will ensure that any restrictions are proportionate and help to support cared-for persons to live as freely as they can by protecting their liberty.

“It will allow the NHS rather than local authorities to authorise the deprivation of liberty arrangements for its own patients, enabling a more streamlined and clearly accountable process in which the NHS has a clear role in helping to afford people their rights.”

Other key blogs raising concerns about the bill can be found here (by Lucy Series, a researcher at the Centre for Health and Social Care Law at Cardiff Law School) and here (by The British Institute of Human Rights)

6 September 2018



Tributes to ‘generous-natured, passionate and courageous’ activist

Fellow activists and friends have paid tribute to Juliet Marlow, the “campaigning linchpin” of the organisation that leads disabled people’s opposition to the legalisation of assisted suicide in the UK.

Members of Not Dead Yet UK (NDY UK) were among those paying tribute to Marlow, after her death on 11 August following a short illness, describing her as NDY UK’s “communication guru” and “one of the most generous people we have ever known”.

Baroness [Jane] Campbell, co-founder of NDY UK, said she and fellow activists were “absolutely devastated” at their loss.

She said: “Not only did she contribute an invaluable service to our under-resourced fight to protect the lives of disabled people (coordinating, writing and speaking for us), but most importantly she was our steady rock and friend.”

She described her as “the most generous-natured person I have ever come across”.

In a statement on its website, NDY UK added: “Juliet was totally committed to this work and ensured that everyone knew exactly what we were doing, why we were doing it and she helped everybody take our message forward.

“She devoted a great amount of time and energy to our cause.

“But there was also so much more to Juliet’s talents. She researched for us, she wrote for us and she spoke for us, often to very hostile audiences.

“She was courageous, kind and above all, one of the most generous people we have ever known.”

In one campaign video recorded for NDY UK in 2015, in opposition to the latest attempt to force a bill to legalise assisted suicide through parliament, Marlow said: “The idea that the pro assisted suicide lobby have that if you need help to do things to help you wash, dress, bath, toilet that you’re not dignified is complete rubbish and it makes me quite angry.

“I have been employing my own personal care assistants for the last 20 years and because of them, because I have the right support and I have the right amount of painkilling medication I have a fantastic life.”

She added: “Once suicide, assisted suicide, physician assisted suicide, becomes accepted, it will become expected.

“Do we really want to live in a society that expects its citizens to end their own life when they’ve outlived their own usefulness?”

In one of her last public appearances, in February, she spoke for NDY UK at a controversial conference hosted by the Royal Society for Medicine on “choice at the end of life”.

She had only been added to the list of speakers after NDY UK raised concerns at not being invited to speak at the event.

She told the conference that legalising assisted suicide would “negatively affect the relationship between disabled people and society” and warned of the risk of people being “slowly” coerced into agreeing to an assisted suicide.

Instead of legalisation, she said, “we need to call for better funded social care and palliative care; that’s what makes the difference between a good life and a bad life for disabled people and that is being slowly eroded by the current administration”.

Marlow also campaigned on other significant issues affecting the lives of disabled people, including the closure of the Independent Living Fund.

She was a former student at the Hampshire residential special school and college Treloar’s, which saw scores of pupils with haemophilia given NHS blood contaminated with HIV and hepatitis in the 1970s and 1980s.

Her first husband, Simon Sedgwick – who she met at Treloar’s when they were both taking part in the school’s production of the musical West Side Story – was one of those who was given infected blood and later died.

Marlow later campaigned for justice for survivors and relatives of those who had been contaminated.

Reports suggest said that of 89 children with haemophilia who attended Treloar from 1975 onwards, all were infected with hepatitis or HIV, while only 16 are still alive.

Comedian Laurence Clark was Sedgwick’s classmate and best friend at Treloar’s.

He said: “My overriding memory of [Juliet and Simon] at school was just how grown up their relationship was compared to everyone else’s and how much in love they were.

“Whilst I was working up the courage to ask out my first girlfriend, they were making wedding plans. They married when Simon left college in 1992.

“I went down to stay with them a few times in their flat in Southampton, where we’d binge watch Juliet’s old Monty Python videos.

“We lost touch for a while after Simon’s funeral, but years later reconnected through the movement.

“In later life I greatly admired her campaigning work against assisted suicide, a deeply personal issue for her. Juliet truly managed to make the personal political.”

Ade Goodyear, another friend from Treloar’s, met her when he was 10 when they both started at the school in 1980.

He said she was a talented singer-songwriter and he performed alongside her in the school band, The Traill.

She sung lead vocals (as Juliet Boyd) on a song with an anti-drugs message, Don’t Chase The Dragon, that was recorded and released, and featured on the television programme Hearts of Gold in 1988, after the intervention of a record producer the students had sent their song to.

Goodyear said his friend “had the most remarkable ability to make life feel long, even to those who lives were shortened.

“Her friendship was simply life defining and kind, wrapped in the memories of the force for good Ju was and will always be.”

He said she was “an absolute joy to know and was always emotionally intelligent from a tender age.

“She was also a bundle of knowledge who had the most amazing way of listening without judgement and then offer such supportive advice that so often fitted any individual’s needs.

“She was so attentive, [and] emanated a calm but determined strength that made me and all that knew her proud to say so.”

In addition to her activism, Marlow was studying for a PhD at Southampton Solent University, where she was studying the changing representation of disabled people with physical impairments on television, and was a freelance writer and a former development worker for Hampshire Coalition of Disabled People.

She was also a singer and a member, alongside her second husband, Keith, of the rock/pop cover band The Marx Brothers Band.

Dennis Queen, an NDY UK activist, said the loss of their “fierce warrior” had left “such a big hole”.

She said Marlow had dealt with much of the day-to-day work of NDY UK “quietly behind the scenes, as well as writing many of our articles, giving interviews with the media, and getting on the streets whatever the weather, when we needed to protest.

“We’re going to be a bit lost without Juliet for some time. I’ll personally miss her astute guidance, excellent ideas and rational approach, as well as her fierce and fabulous personality. And her absolute refusal to ever budge off message.

“All of us at NDY UK wish to send our love and respect to Keith and the rest of Juliet’s family, and to thank them for sharing Juliet with us.”

Another leading NDY UK activist, journalist and presenter Mik Scarlet, said: “Juliet was one of those rare people who was driven by the feeling that she wanted to leave the world a better place than she found it.

“I hope that her family know she surely did that. Her passion and drive, and sense of humour, was infectious and made you want to do better.

“I’ll miss her so much, and will hold her in my heart, along with so many wonderful disabled allies we lost recently, whenever I campaign for that better world.”

Baroness Campbell said that Marlow’s loss would leave a significant campaigning hole, with NDY UK now “in desperate need of someone to carry on the work that Juliet gave so readily and with passionate commitment.

“She will never be replaced, but we must continue our fight against the dark forces of assisted suicide – that’s what she would want and expect of us.”

6 September 2018



Exhibition of photographs aims to show ‘story arc of Deaf community’

A new exhibition of pictures by two Deaf photographers will highlight the achievements of a dozen Deaf people, and the barriers they face, and help to tell “the story arc of the Deaf community”.

Among the 12 subjects to be featured are the award-winning actor and writer Jean St Clair, who has performed in the UK and US; Ben Fletcher, the first Deafblind candidate to stand for parliament – for the Green party – who is also a senior manager and developer for the Financial Times; and fashion, lifestyle and travel bloggers Hermon and Heroda Berhane.

Other subjects include actor Sophie Stone, best known for appearing in two episodes of Doctor Who, but a prominent stage and television performer and co-founder of theatre company The DH Ensemble.

Some of the other 12 Deaf people featured are less well-known.

They include postal worker Charlie Faulds, who struggled to find work as a plumber because of communication barriers; Sanchu Iyer, from the Deaf Ethnic Women’s Association; and Sam Calder, a programme manager at The British Sign Language Broadcasting Trust.

The photographs have been taken by Levent Marasli, a photographer and teacher of the Deaf at a south London secondary school, and Gü Dopran, chief executive of Signlync, which is developing an app to connect Deaf people with interpretation services.

Dopran said: “This exhibition is important in highlighting the institutional barriers placed upon the Deaf and disabled communities.

“We have talent, desire, passion and the will to excel but without opportunity these traits become less and less important.

“Everyone within the Deaf community understands and has experienced ‘barrier fatigue’. We need access to all areas of society!

“The strides made by society in general over the last decade have been great, but it’s like opening a door halfway. We can see into the room but can’t quite get all the way in.

“This exhibition is to promote people that have broken through the barriers and are achieving great things. This should serve as an inspiration to those still striving.

“Among the 12 are successful people but also those still searching for their niche.

“When telling a story, it’s important to have a beginning, middle and end. We want to show the ‘story arc’ of the Deaf community.”

The exhibition is supported by Elrem – a consultancy that supports Deaf freelancers and business owners, including Marasli, Dopran and the Berhane twins – and by Signlync, and takes place during International Week of the Deaf.

The exhibition will be at Leman Locke hotel, 15 Leman St, Whitechapel, London E1 8EN, and will be open to the public between 9am to 10.30pm from Wednesday 26 September to Sunday 30 September.

Anyone interested in attending a private view on Tuesday 25 September, 6.30-9pm – which will be attended by the two photographers and some of their subjects – should email

6 September 2018


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