Disability Rights UK Newsletter

Winter vaccine schedule for Disabled people unclear

Plans for the universal roll-out of a third booster vaccine are in doubt.

The Government is now likely to propose that only over-16s with immune-suppression, care home residents, over-70s, frontline health and social care workers and people classified as clinically extremely vulnerable may be considered for a third jab.

The news comes as new research shows that fully vaccinated adults can harbour Delta variant virus levels as high as unvaccinated people. There is not yet a consensus on whether this causes greater transmission of the virus, but it does raise concerns.

The current data suggests that people who cannot be vaccinated, and those with conditions the government does not recognise as making them clinically extremely vulnerable, may be at greater risk.

The government is currently funding a study, OCTAVE DUO, to determine the effectiveness of a third vaccine for people with weakened immune systems. The initial OCTAVE trial has published data showing that 89% of immunocompromised people produce antibodies following vaccination, with 60% generating a strong antibody response after a second dose. The remaining 40% show a low or undetectable immune response.

On 1 August 2021, 91% of people identified as clinically extremely vulnerable, had received both doses of the vaccine, with 94% having had their first dose.

The government is also considering reducing the age limit for people who can have vaccines down from 16 to 12 with a view that this will stop the virus from sweeping through secondary schools in the autumn term, and protect clinically vulnerable teenagers.

DR UK’s Fazilet Hadi said: “We heard from many Disabled people who were vulnerable to the worst effects of the virus during lockdown who were not in the top priority groups for vaccination. If the Government is going to offer booster jabs to those it considers to be the most clinically vulnerable, it must focus on groups one to six, not just groups one to four. Group six included people with conditions such as kidney disease, learning disabilities, motor neurone disease and ME. We know that hospitalisations and deaths are down as a result of the vaccine rollout, but there are still thought to be over two million people who have developed long covid. This debilitating condition wrecks both lives and the economy.”

Disabled children face digital divide

Disabled children face greater inequality because of lack of access to digital technology, according to a new report from the KIDS charity and the Disabled Children’s Partnership.

Barriers to getting online are creating a digital divide between young people who can access education, services and friends, and Disabled children who can’t.

A new report from the University of the West of England – Locked Out: Digital Disadvantage of Disabled Children, Young People and Families during the Covid-19 Pandemic reveals digital disadvantage happens when families are unable to access computers, phones and broadband for financial reasons or lack of digital knowledge, but also when hardware and software is not designed inclusively or when services do not invest in inclusive technology.

This results in children and young people being locked out from accessing education, health care and a social life at a time when being able to use digital technology is increasingly a requirement for equal participation in society.

Katie Ghose, Chief Executive of KIDS, said: “Digital access isn’t a luxury, it’s a right, but one denied to many Disabled children. As we move into an increasingly online world we must make sure no child is left behind.

“The pandemic lockdowns have shown the importance of digital technology for young people, and many Disabled people developed their digital skills and confidence. But for those who were locked out by equipment, funding or because of sensory impairments, tech-phobia or dexterity limitations, lack of online access has increased isolation and reduced access to support.”

The report recommends that an urgent recovery programme is put in place to increase digital skills for whole families to stop digital disadvantage resulting in children being permanently locked out; that digital service design should start with accessibility, co-created with Disabled people; accessibility standards must be improved so that Disabled children and young people aren’t locked out from essential information; digital infrastructure should be fast, available and affordable for all, and that digital inclusion should be an explicit part of government policy at every level from disability policy to strategy and reviews.

80k residents could be receiving at-home care – IPPR

80,000 care home residents could be receiving social care in their own homes according to the Institute for Public Policy Research (IPPR).

New IPPR analysis shows that there is a ‘postcode lottery’ when it comes to accessing care at home – an option which would often be preferable, and cheaper for people who need care, resulting in fewer people needing to sell their homes.

The IPPR is calling for Government reform to go beyond funding and to enable people to live flourishing lives.

It says that research shows people strongly prefer care in their home – and that home care increases independence, enabling people to lead more fulfilling lives.

It says the analysis shows that levelling up home care across the country would save local authorities in England £1.1 billion per year in social care budgets – costing two thirds less than residential care. Read more here.

Actors ‘too Disabled’ for Disabled roles

Disabled screenwriter Jack Thorne has spoken of how Disabled actors are being turned away from TV roles written for Disabled characters because they are deemed to be ‘too Disabled’. Parts are instead going to non-Disabled actors – a move known as ‘cripping up’ or ‘cripface’.

Giving the McTaggart lecture at the Edinburgh International TV Festival, he called for quotas to level up the number of Disabled people seen on screen.

He said that funding for shows featuring Disabled characters is difficult to obtain, Disabled writers are regularly unable to attend script meetings because production offices are inaccessible, and spoke of the time a wheelchair-using friend had to crawl along a muddy floor to reach her desk on a film shoot.

Calling disability the “forgotten diversity”, he said that the situation was just as bad for Disabled people working behind the scenes in TV as well.

He called for production companies to set aside extra money in their budgets to create a dedicated fund to make facilities fully accessible.

“I know the Black Lives Matter movement has a long way to go, and that no one is satisfied with our current state of affairs, but I can’t tell you the difference it has made to casting conversations,” he said. “However, the conversation on disability representation is nowhere near as advanced; I have had conversations about Disabled talent for years where some of the most appalling things have been said.”

“Disabled people and Disabled stories tend to be relegated into two camps – heroes or victims, preferably both. Inspirational crips climbing up a mountain on their hands while we all applaud. Sometimes they’re funny, an acerbic best friend; mostly they’re just sorrowful.” Watch the lecture here.

C4 privatisation is a threat to Paralympics, says Ex-Chief

Channel 4’s decade of Paralympic coverage on prime-time TV could be abandoned by its new owner, says a former CEO.

The channel is broadcasting a record 1,300 hours of coverage of the Tokyo Games, treble that of the BBC’s Olympic coverage, securing its place as the world’s leading Paralympic broadcaster.

Channel 4 was set up by the Conservative government in 1982 as an editorially independent broadcaster to provide a culturally challenging alternative to the then other three terrestrial channels. It is publicly owned but commercially funded, mainly by advertising.

“The way that Channel 4 was set up gives it the ability to do things unlikely to be achieved by any other broadcaster,” said Lord Burns, who chaired Channel 4 when it took over the Paralympic TV rights from the BBC. “The Paralympics was made for a TV station like Channel 4, with people who can take risks, people whose remit requires something that is different.

“I think it is unlikely another broadcaster would do the Paralympics on the scale of Channel 4,” he said. “Certainly not with the same determination and investment. It is a commercially riskier activity.”

DR UK slams ‘disability freakshow’ dinner

A company attempting to host a series of dinners at which a replica of the body of Joseph Carey Merrick would be dissected has been slammed by disability campaigners.

ITAE, run by Sam Piri, was featured on Dragons’ Den in 2018 for its innovative idea of dissection dinners, mainly for healthcare professionals.

But its latest venture has been strongly criticised for the way in which it is portraying Merrick, a Victorian Disabled man who gained worldwide fame for having the condition Proteus Syndrome, resulting in severe physical disability including facial differences which led to him being derogatorily nicknamed ‘The Elephant Man’.

The events have been scheduled for the Halloween period, and will be held in a circus big top. The website promoting the event reads: “Roll up roll up, step into our… big top tent for a night of human anatomy as we take you back to 1885 and inside Joseph Merrick…. Encounter the incredible story of the Remarkable Joseph Merrick, who wanted to be just like everybody else.”

Mandy Sellars and Tracey Whitewood-Neal, who run charities supporting those living with rare overgrowth conditions said: “We have been told by the company that this is an educational event, but by their own admission, they have done no research in to Proteus syndrome, which is the condition that doctors now believe affected Joseph.

“In its original marketing campaign, the ITAE used logos of both the BBC and the University of Cambridge, whom we contacted to ask about their endorsement – they subsequently wrote to ITAE asking for their logos to be removed.

“Additionally, we contacted the original venue, Gosforth Rugby Club, which has withdrawn from hosting the event due to the concerns raised.

“The marketing of the event has really outraged and shocked our members suffering from the condition and the wider community of people affected by overgrowth disorders.

“We initially tried to engage with the company through their social media pages but were removed and blocked.”

The pair managed to speak to Mr Piri at the end of July with the aid of a BBC Leicestershire journalist. At the meeting, Mr Piri agreed to look at suggestions around how to market the event without ableism.

Despite this, the website is still themed around circus, the events are still scheduled in the three days preceding Halloween and on Halloween itself, images of a man with an elephant’s head are still being used on a vintage poster on the site, and the language used is still identifiable as relating to circus culture and positions Merrick as someone to be objectified.

DR UK’s CEO Kamran Mallick said: “While dissection and dinner might not sit well together for most people as an entertainment concept, there is an education market for that. What there absolutely should not be a market for however is a disability freakshow.

“It is absolutely disgusting that in 2021, companies think it’s ok for the sake of entertainment to literally revive the worst excesses of Victorian culture which demonised, objectified and exploited Disabled people.

“The whole theme of the event is tantamount to a hate incident. In UK law, there is no recognition of disability hate crime, despite hate crimes being recognisable for other protected characteristics. It is hateful and discriminatory, deeply hurtful to those who live with these conditions, and is exactly the kind of event which ensures that society continues to believe in and perpetuate damaging stereotypes of Disabled people.”

One mother whose daughter has an overgrowth condition, has started a petition which has over seven thousand signatures to try to get this event stopped.

Disability Rights UK is recruiting
Disability Rights UK is looking to hire two young people to join our team, via the Kickstart Programme. We have two Programme Assistant vacancies within dynamic areas of our work – one within our Disability & Skills Unit; and another in our Get Yourself Active Team. For further information click here.

DR UK Leadership Academy Programme goes online

The Leadership Academy Programme (LAP) was developed after a group of Disabled senior leaders found that, whilst Disabled employees were managing to gain employment, their ability to excel up the corporate ladder appeared limited.

We have seen LAP run successfully now for seven years and to date we have a vast array of testimonials from both delegates and mentors, indicating the impact that participating in LAP has had on them, both personally and professionally.

LAP is now delivered online. The benefits of moving the programme online include providing a modular format to encourage sustainable growth for LAP and being able to provide tailored options for employers. Participants can access the programme flexibly, without travel barriers.

LAP aims to:

  1. Address the need for greater equality in the workplace
  2. Improve the employment position of Disabled people, enabling them to fulfil their potential
  3. Provide employers with access to the widest possible pool of talent at management and senior level
  4. Increase the visibility of capable, confident Disabled leaders, to contribute to a more balanced view of Disabled people across UK society
  5. Build recognition of the qualities Disabled people contribute in terms of resilience, problem-solving, empathy and creativity
  6. Impact workplace culture and help to bring about genuine inclusivity for Disabled employees.

The 2021/22 course comprises 14 sessions (of 2-4 hours) running from October 2021 to May 2022. It has been updated to include content which is reflective of the changing environment we are now faced with and includes a mix of core leadership modules and is recognised by The Institute of Leadership & Management (ILM).

The Programme includes:

  • Career aspirations, setting objectives and goals
  • Communication/leadership/management skills
  • Self-development and confidence-building
  • Applying new techniques to live projects and presentations, related to a current workplace challenge. Providing a great resource for their place of work.
  • One-to-one mentoring from an experienced senior leader
  • Sharing experiences with other aspiring managers and learning from their success strategies
  • Being a member of our Disability Alumni Network, offering exceptional networking events with inspirational keynote speakers

Programme option 1

Employers can sponsor an individual employee(s) onto the main cohort. This is a mixed cohort, where our partnering organisation such as The Ministry of Justice, The Foreign and Commonwealth Office, Care Quality Commission, Devon & Cornwall Police, and many others annually send employees onto the programme. These Delegates return to their place of work, with increased confidence and leadership skills and this ultimately impacts their working practices and culture of the business/organisation, ensuring greater inclusivity for Disabled employees.

Programme option 2

We can design a bespoke programme, tailor-made to meet the needs and aims of the organisation. Employers can place, 10 or more staff, into a private cohort and we’ll help to manage all the administration, mentoring relationships, and programme schedules, affording the delegates the best possible opportunity to succeed and for the greatest impact on the business/organisation.

If you would like further information about LAP, please visit our website, or contact Katrina Morris our Project Manager: katrina.morris@disabilityrightsuk.org.

Shaping our Lives is recruiting a new communications officer. We are looking for someone who is enthusiastic, self-motivated and experienced. The position is part-time three days a week) and home-based. Join an excellent, dynamic organisation at an exciting time.

The successful applicant will need a year’s experience (paid or voluntary) in all aspects of the communications mix.  The salary is £27,000 per annum (£16,200 pro rata for 3 days/21 hours a week). The deadline for applications is Friday 17 September.

Get Involved

Join our conversation on assisted dying

On 1 September between 5.30pm and 7pm, Disability Rights UK is hosting a conversation on assisted dying to enable Disabled people to listen to a range of views from prominent Disabled activists.

Speakers will include:

  • Baroness Jane Campbell
  • Phil Friend
  • Stephen Duckworth
  • Tom Shakespeare

Attendees will be able to listen to the deeply held convictions on both sides of this debate and to ask questions and make comments. With a Bill in the House of Lords and one planned in the Scottish Parliament, discussion of these complex issues is vital.

Please let us know if you require BSL and/or captioning so we can ensure group discussions are accessible.

Book hereFor Access Requirements please email: chelsey.tredgold@disabilityrightsuk.org

We are here – support our Paralympians

Virgin Media, an official partner of Paralympics GB, has launched its sponsorship campaign #WeAreHere – a virtual movement to rally the nation to support our athletes out in Tokyo.

#WeAreHere is fronted by Alex Brooker, Roman Kemp, Lutalo Muhammad and Sophie Morgan to inspire the British public to show their wave of support for Paralympics GB. The movement will encourage fans to upload videos of themselves using the #WeAreHere hashtag to recreate their own version of the famous ‘Mexican Wave’. Fans can get creative in their posts as all waves are unique – so, no matter who you are or where you are, everyone can join in.

Its aim is to make the athletes feel that even though they are so far away without any crowds, friends or family with them, that the British public are still here, supporting, cheering and are virtually filling the stadiums. Watch more here.

Spectrum 10k autism study

Spectrum 10K aims to investigate genetic and environmental factors that contribute to the wellbeing of autistic individuals and their families. The study hopes to recruit 10,000 autistic people and, where possible, their families to take part. Find out more here.

Want to host your own accessible film screenings?

Access Launchpad is @cinemaforall’s coaching and bursary programme for those with access needs to launch new community cinemas.

A Cinema For All coach will teach you all you need to know to get started, while adapting coaching materials to suit any access requirements you may have. Please contact Abi and Ellie at info@cinemaforall.org.uk if you require an accessible application format. Apply as soon as possible here.

PAW toolkit

The Pain at Work toolkit is an online digital toolkit designed to provide information, advice and guidance for people at work who have chronic or persistent pain. This is an open access, free, online resource, for people working in any role, organisation and sector. Access the PAW Toolkit here. For more information, contact the project lead: Dr Holly Blake, School of Health Sciences at holly.blake@nottingham.ac.uk


New resource to support the social care sector

Don’t forget you can download the new Get Yourself Active Social Care Activity Pack from the GYA website.

The resource was designed with experts in the social care and physical activity sectors including Durham UniversitySport EnglandSenseSport for Confidence, Activity Alliance and Community integrated care.

The interactive pack offers practical help, tips and advice that can be used to support Disabled people to participate more in sport and physical activity. It is free and available online for all – designed to be shared and consumed with the sole purpose of breaking barriers to disabled participation in physical activity. 

Read our blogs

You can read our blog on the Paralympics here and a blog on NICE and ME/CFS by guest blogger Sian Leary here.

Job opportunity

Shaping Our Lives is recruiting a Communications Officer. Find out more here: Noticeboard – Shaping Our Lives

British Institute of Human Rights – Government consultation project 2021

BIHR has concerns about the human rights implications of government approaches to policy consultations. Many groups it works with, and people with lived experience, have a lot to offer policy consultations, from the impact on individuals to the realities of staff implementing proposals. But engaging with government consultations takes valuable time and resources from all involved, and it is increasingly concerned about flawed processes which exclude or lead to “consultation fatigue”. Governments have duties to uphold human rights; developing a human rights approach to policy consultation could offer civil society a proactive solution, helping to balance the power dynamics. BIHR is holding a zoom workshop at 3pm on 16 September to hear views on how the government undertakes consultations. You can register here.


Our helplines are operating as normal:

Personal Budgets Helpline

Disabled Students Helpline

Welfare Rights Helpline for Member Organisations