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Barriers, Ignorance… And More Barriers: The Every Day Experiences of Disabled People

Published by Anonymous (not verified) on Fri, 29/04/2022 - 6:00pm in

Society and politicians need to wake-up to the fact that disability is a normal part of the human condition that can impact us all, says Penny Pepper

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I wonder sometimes whether the day come when I will forget I live in a disabling society? It is unlikely.

Personal experience and the endless statistics tell me otherwise, including how hate crime towards disabled people has escalated under the Conservatives. Outright bigotry is easy to notice, sometimes it wears the smiling face of religion and charity.

Our hidden history is another factor – one of abuse, eugenics and murder. Aktion T4 was the enforced euthanasia of disabled people – ‘useless eaters’ – by the Nazis. The Winterbourne View scandal saw disabled residents pinned down, slapped and taunted. Jimmy Savile preyed on the vulnerable and disabled – I met him as a child in hospital and managed to flee.

These realities must not be dismissed as disabled people expressing ingratitude or asking for ‘too much’. Equality is not a privilege. 

Disabled activists and academics fight on to connect the understanding of disability to the root causes of all discrimination. You can provide a wheelchair user ramped access into a venue, but that doesn't stop that person from being considered second-class, annoying, needy, repulsive – and too costly. Pointless, in fact.

The repellent fall-out from such horrific histories continues to haunt disabled people. Abuse remains chronic and largely unreported because it is not taken as seriously as it is with other marginalised minority groups.

The Coronavirus pandemic has been a case in point of when I have personally noticed discrimination and bigotry. For instance, a personal assistant of mine recently arrived for work and then tested positive – but I’m confronted with staffing emergencies that often lead me to make decisions to employ unvaccinated workers. I’ve written before about the care industry catastrophe; there are simply not enough people wanting to do the job.

For 26 years, I’ve run my own ‘care scheme’ within the embrace of the independent living movement using direct payments. I know my stuff. So, what do I do when the 15 in my emergency bank aren’t available? There is no social services safety net – the idea is laughable – and it’s plain we know more than they do about the reality of employing care workers. I scrape through – my Polish PA travelled over. Lessons are learned, but solutions stay challenging.

Equipped with my experienced PA, I set my work schedule. I do something I love, but it’s a road of multiple obstacles. Initially, it was general discrimination that cut across many of the tropes of marginalisation. You’re a (disabled) girl. You can’t be a writer or a wife. And you never went to university... On it goes. While angst-ridden teenagers may dream of being the next literary sensation, my added labels condemned me further.

The Government-run Access to Work scheme has been around since 1994 and, in principle, it’s a great idea. Through funds for equipment and/or support workers, it attempts to remove barriers and create equality in employment. But it persists as a truly Kafkaesque nightmare.

Much of the processing required remains paper-based – you have to print, sign and post a document in an actual envelope. At a time when online services remove so many barriers – and most other Government departments are digital by default – no one seems to know why this scheme is lagging behind.

As a speaker and spoken-word poet, I travel the country – and barriers begin the moment I leave home. 

It starts with broken pavements and the mysterious phenomena of non-paired dropped kerbs. I speed down the kerb – with its tactile paving for visually-impaired people – and then I’m stuck in the road. Not such a big deal at home in Hastings, but a nightmare in Westminster – a borough that wins the award for being one of the richest and the most scandalously lacking in access. 

The most recent time I had a meeting in Soho – a place I love with its roads of heavy history – I was late because of the lack of drop kerbs.

Complications then develop when I need the toilet. My usual approach is to use the nearest well-known coffee chain – mostly reliable for wheelchair access (though not in Soho).

Travelling can never be taken for granted. I work out where I’m legally allowed to park with my Blue Badge. They are not, like some people assume, an all-encompassing means of free parking anywhere. I seek out permitted spaces, but my success rate is as low as 30%. Why? Because every other disabled person is up against the same barrier of finding parking. And don't get me started on the massive fraudulent use of the badges…

On a recent appointment in Whitehall, I decided that the bus would be safer – as disabled bays for cars are rarities in that area. But the bus is a chore too. The wheelchair space may be taken, the ramp broken, the driver unhelpful – and that’s before the loud abuse and the refusal of other passengers to clear the space. As for Black Cabs, I haven’t the energy to extrapolate all the barriers with that option; often too tired to fight yet again for what should be basic rights in many areas. 

If work means staying over, finding a suitable hotel is another ordeal. 

It begins with an online search, which finds 300 hotels in the area. If you add the filter for 'wheelchair access', this can reduce the available options to as low as six. This is before you talk to uninterested hotel staff and ask for specifics that will ensure you have equality of service as one of their customers. I pay the same rate, after all. Then there'll always be the manager who’s utterly surprised when my PA doesn’t want to share a double-bed with me. This often forces disabled people to need a second room, resulting in double the costs.

While other disabled people will have many different stories to tell, education remains essential for society in general, and for our politicians in particular. The multiple barriers that endure are removable and not so difficult to moderate. Disability is part of the norm of human experience and, the more we all get used to this collectively, the better.

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Philosophers Create “Pledge to Organize Online-Accessible Philosophy Events” Campaign

Published by Anonymous (not verified) on Sat, 16/04/2022 - 4:20am in

The Philosophers for Sustainability group has launched a campaign to get philosophers to pledge to “wherever possible to organize online-accessible research meetings.”

The pledge continues:

Such meetings may be organized either fully online or using a hybrid (online/in-person) model. In both cases, we will aim to make them accessible remotely by anyone who wishes to take part in them while fulfilling other requisite criteria, e.g. has had their paper accepted for a particular meeting, is a scholar in the relevant disciplines etc. We will offer such online accessibility to both presenters and participating audiences, from the start and for all academic presentations or aspects of the event. In doing so, we will take advantage of the accessibility features the online medium affords, such as closed captions, transcriptions etc. Finally, we will require no justifications or explanations of anyone who expresses their wish to take advantage of such online accessibility, nor will we charge unreasonable fees for their online participation.

The pledge is aimed at making academic philosophy “more sustainable, accessible, and inclusive, both globally and locally.” They elaborate:

Online accessibility makes it possible to include more fully a host of philosophy stakeholders whose participation is eminently desirable. Among them are low-income, disabled, neurodivergent, international, and migrant philosophers, caregivers, philosophers with dietary restrictions, and students and scholars with limited access to travel funds. Finally, online-accessible meetings make our practices of gathering to discuss academic ideas more sustainable by reducing expensive and environmentally harmful travel.

You can view the pledge and add your name to it here. Thanks to Filippo Contesi (Barcelona) for bringing it to my attention.

While I think making philosophy events accessible by making them at least partially online should be encouraged, ideally there would be a variety of philosophical events, including some that are not online at all, even if they could be.

Why think it’s valuable that there be some events that aren’t online at all? One might think it’s good if we can:

  • avoid the inhibitory gaze of the camera
  • minimize the prospects for potentially damaging contextless sharing via recordings
  • foster, through physical proximity, mutual attention, trust, and good will (see here)
  • encourage attendance at most sessions, and reap the benefits of that shared context in other sessions and discussions during the event
  • reduce the ways in which academic speech is monitored and directly mediated by corporations
  • arrange situations that make in-person accessibility more likely (having the option to offload accessibility to the internet may decrease conference organizers’ motivation to help resolve in-person accessibility issues for participants)

Additionally, because there is a value in in-person academic events, we may want to resist contributing to precedent-setting activity that hastens their elimination.

Let me briefly address a few possible objections:

“Not all in-person events have the advantages you’ve ascribed to them.” True. Big events (such as the Divisional Meetings of the American Philosophical Association) may not be any worse for becoming more accessible online. My argument is only that, for the types of meetings that would be better in some reasonable ways by not having an online option, it would be good if some of them did not have an online option.

“Some people, through no fault of their own, have neither the funding, time, or ability to attend in-person events. If events have an online option, these events will be more accessible to these people.” This is also true, and counts as a reason to have a lot of events be accessible via online means. But if I’m right about the goods of just-in-person events, we have reason to have some of those, too. My view is that it is good if we have both kinds of events.

“There’s nothing in principle impossible about there being events with substantial online components in which we get many of the goods of strictly in-person events.” True again. But I am not talking about what is in principle possible. I am talking about how things are likely to be, given my experiences and my understanding of people, and given how various events are likely to be organized. And online versions of these events are likely to be worse in some important ways. Yes, they will be better in some ways, too. So let’s endorse having a variety of types of events, from the completely in-person to the completely online.

“I don’t get anything extra out of attending conferences in person. The supposed value of entirely in-person events you’re talking about sounds like bullshit.” If this is what you think, then don’t go out of your way to attend entirely-in-person conferences. But do understand that people who are at least as smart and reasonable as you recognize the goods I’m talking about.

So what about the pledge? My hope is that a lot of people do sign it, so that it’s more likely that there will be many academic philosophy events that are more easily accessible to more people. Easy accessibility is good. But since it’s not the only thing that’s good, I won’t be signing the pledge, and I hope some other potential conference organizers refrain from doing so, too.

The ‘Big Power Off’ and the Importance of Fact-Checking

Published by Anonymous (not verified) on Thu, 14/04/2022 - 9:11pm in

Katherine Denkinson explores the genesis of the protest against rising fuel costs and the media’s unwitting part in promoting untruths

Disabled People Against Cuts (DPAC), a group of disabled activists from Sheffield, appeared in an article in the Star on 21 March explaining a protest it was organising in response to rising fuel costs.

Concerned and angry, the activists had planned the ‘Big Power Off’, which involved participants not using any gas or electricity on 1 April.

“The main reason we started this was because we could see the protests happening in the streets all over the country,” Jen, who runs the DPAC Twitter account, told Byline Times. “Yet so many of our members couldn’t get out to them to get their voices heard because we’re stuck in due to our disabilities and or caring responsibilities.”

Jen said the group hoped the protest would “show the Government, Ofgem and energy providers the strength of feeling that there is among the general public against the energy cost rises” and highlight the fact that “a lot of people are not going to make it to this winter”.

DPAC was not “trying to plunge the nation into chaos" but trying to get the energy suppliers’ attention, Jen added. 

Two weeks later, however, on 2 April, Karen Brady – whose Twitter bio describes her as an “author, writer, socialist, feminist and advocate for justice” – posted a tweet claiming that Spanish protestors had successfully forced the Government to roll-back energy prices by turning off the power in their homes for 10 minutes. Brady encouraged UK tweeters to do the same, using the hashtag ‘#PowerOff’.

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DPAC then contacted Brady, suggesting that she use their hashtag and pre-prepared campaign materials – focusing on a second action on 10 April.

The Big Power Off has since gained national newspaper coverage, with the original protestors seemingly being sidelined by many mainstream outlets who named and quoted Brady as the organiser. Brady’s rapid rise to popularity has led many Twitter users to question the validity of her claims.

This is a case in point of the dangers of journalists taking popular and ostensibly relevant Twitter accounts at face-value.

The Twitter Misinformation Sphere

The desperation for rolling news coverage and ‘content’ appears to have led many outlets to sacrifice fact-checking.

In 2013, the Mirror was taken to task over an article about former Arsenal player Nwankwo Kanu, which claimed that he had written-off £3 million owed to him by Portsmouth FC. BBC Sports reporter Oluwashina Okeleji called out the error, stating that the newspaper had taken their information from a fake account.

In 2020, a US radio host set up a fake Twitter account claiming that he was on a cruise ship quarantined for COVID, concocting an outlandish story which was promptly reported as fact by The New York Post

Last month, The Times published an article allegedly written by ‘Luba Dovzhenko’, a Ukrainian student who had supposedly returned to Ukraine to fight. A Twitter fact-checker and data scientist wasted no time in pointing out various anomalies within Dovzhenko’s social media accounts – including a fake profile picture (which had accompanied the article) and inconsistencies in its tweets. The Times’ Twitter account still links to the page, but clicking the link reveals that the article has since been removed. The Times has not commented publicly on the matter. 

Most recently, an ITV News report on the Big Power Off, neglected to name any of the organisers, but included one screenshot of a supporting tweet. Twitter users seeking to follow the account quickly discovered it to be a hub for COVID misinformation. Research shows that the account had been created in 2012 and posted precisely one tweet (promoting a non-existent blog) until 2021, when it became a steady stream of anti-vaccine vitriol.

The fuel protest has been shared and retweeted millions of times by various people and it is unclear why ITV News chose this account to be representative of those involved.

So who is Karen Brady? 

According to LinkedIn, she is a “founder and head hunter” who started her own employment agency (Lawden Executive Employment) in 1985, which apparently ran until 2000 and was “sold... for [$3 million] to a USA corporate”. 

Byline Times' investigation has revealed this to be only partially true. The original founder was Martyne Manning who started the company in 1985. Brady (then known as Kavanagh) owned and operated Lawden Executive Recruitment from 1990 to 1996 when it was seemingly forced into liquidation because it could not “by reason of its liabilities” continue doing business.

Following this, Brady ran the Laptop Lifestyles venture – an affiliate marketing scheme in which participants apparently make money by reposting and sharing videos from ‘get rich quick’ accounts. Her latest venture appears to be another employment agency and her early tweets reveal her to have been involved in a number of multi-level marketing schemes such as ‘Forever Living’. 

As an expat currently living in Spain, Brady’s claim that Spanish protestors convinced the Government to roll-back its energy prices carried a certain weight and has been reported by a number of outlets.

Unfortunately, the “silent collective action” Brady recommended appears never to have actually happened. In March, Madrid’s far-right Vox party organised a street protest which led to President Pedro Sanchez freezing costs and the city of Murcia held a 'lights off' protest which lasted for one minute as part of a symbolic event to highlight people’s growing concerns.

When Byline Times asked Brady for a link to local reporting of the alleged Spanish protest, she provided a screenshot of an article by EuroNews. Written on 10 April, it appears to have taken Brady’s assertions as fact because there are no links to the “silent collective action” which it mentions. Pressing Brady for a link to the actual event has thus far been met by silence. None of this newspaper's own searches have produced evidence of such an event in either the British or the Spanish press.

It is easy to look at this as a small deception to promote a greater good – but the implications are potentially more significant.

Not only has Brady’s story eclipsed reporting of already marginalised activists, but repetition of apparent falsehoods as fact damages the reputation of those reporting it – and the validity of the campaign.

A key feature of the current war in Ukraine is the war on information. The prevalence of misinformation is gradually eroding people’s trust in the mainstream media. Journalists regularly find themselves on the receiving end of abuse from trolls and truth is fast becoming harder to establish.

While it is not possible for the press to fact-check everything on Twitter, it is the duty of journalists to ensure that inaccuracies on social media do not seep onto their own platforms.

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From Nostalgic Disability Direct Action On Screen – To Rishi Sunak’s Cold Shoulder in the Spring Budget

Published by Anonymous (not verified) on Wed, 06/04/2022 - 6:00pm in

A new BBC film, Then Barbara Met Alan, looking at the beginnings of disability direct action, contrasts sharply with Rishi Sunak ignoring disabled people in his Spring Statement, says Penny Pepper

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The BBC's new comedy drama Then Barbara Met Alan is remarkable for its personal and socio-political impact. Nostalgia imbued me as I watched: I know these characters and call many of them my friends.

The power of DAN (Direct Action Network) should never be underestimated. It became a focused rallying cry for disabled people at a time when we were stuck; before any form of equalities legislation and prior to the digital age. I remember sporadic newsletters arriving in the mail, money needed to sponsor activists’ travel.

While the numbers blocking traffic and handcuffing themselves to buses were few, their influence continues to this day.

But the film blurs reality, as these things often must for the nature of drama. In particular, the eventual passing of the Disability Discrimination Act in 1995 was a painstaking collaborative process with activists and campaigners from a vast range of organisations – including much detested charity groups playing a role.

Even now, it’s apparent that few people realise there is a law that purports to be there for our equality. No one can blame the population at large for not knowing as even disabled activists struggle to understand what it means in real terms.

Many equality trainers denounce the Disability Discrimination Act as a chocolate teapot, with its failure to be backed up by any executive that can respond to incidents of discrimination. Disabled people are burdened with it focusing on the individual – I cannot get into your shop, therefore I will magic up the money to sue you. Unsurprisingly, this doesn’t happen very often. 

Fast-forwarding from those halcyon days of comrades, actions and my own specific activism within disability arts, we now confront the reality of the Chancellor's Spring Statement – which did not mention disabled people at all.

Inevitably, disabled people will be amongst the hardest hit again in the current cost of living crisis, given the disparity between the low rises to benefits and the high rate of inflation. Poverty affects too many people and multiple factors exacerbate its effects, but disabled people have the least means in a disabling society to soften that. With matters such as energy costs, it will most likely boil down to warmth or food or scooter charging or die. 

Seriously, my own energy bill has tripled in the past year – but my power chair still needs charging and my medical condition demands I have heat. This isn’t about luxury or privilege. We are still forced to fight familiar battles. 

Would going back to full-on DAN-style activism help?

Protests can still make headlines, as shown by the demonstrations against David Cameron’s austerity measures and the work of the Disabled People Against Cuts (DPAC) group. Taking to the streets joins us together, and reminds us we are not alone. And we have to hope that changes happen as a result – however little and however small they may seem.

One extraordinary, albeit depressing, similarity between disabled activism then and now is the attitude on the street to disabled people protesting. It’s annoying, exasperating and downright baffling – the prejudice of ignorance mixed with a good dollop of pity (if we’re lucky). I remember being part of a DPAC blockade at the Department for Work and Pensions in 2012. People literally climbed hand and heel over us without eye contact, conversation or care about our safety. We were in the way of them leaving work for the day. I’ve even seen police officers fall into this behaviour. 

Which brings me back to Then Barbara Met Alan. It struck me as a little light, when the truth was gritty. Another thing it didn’t do – and scarcely could – was convey the great passages of time that occur between political developments for disabled people. 

When anything and everything takes twice as long – usually because of imposed constructs such as physical obstacles or incomprehensible information gaps – life slows significantly. There’s also a menacing irony that, while disabled individuals wait a long time for the things we’ve actioned to happen through government processes, benefit cuts and scandalous assessments tend to speed ahead. Always to their time, never ours. 

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While social media and the internet has democratised our exposure and communication, to some extent it is not offering activists as much of a punch as the early shock tactics of DAN. We are now a buzzing planet of congested online activism – in which I am a happy participant – yet I fear that we are becoming diluted in our actions; that this blunts empathy and the gathering of true allies. 

Many have seen Then Barbara Met Alan as a game-changer. I believe that they are right. It’s the first time I can remember disabled people being shown as the activists they are and always have been, concurrent to the age in which they find themselves.

The National Blind League of 250 men, for instance, marched in 1920 to be greeted by a crowd of 10,000 supporters in Trafalgar Square. Protesting for better employment terms from charities, they held banners stating 'Social Justice Not Charity” – a term that remains redolent today. 

As important in the drama is the cheeky, gutsy love story, complete with sex scenes and a resulting baby. Let me tell you, in this context and taken from life, this is not how we are usually represented.

Through Then Barbara Met Alan we can bear witness to our fallen, and the reassertion that a good many of us (myself included) are saturated with the sensibilities of punk politics. Rishi Sunak can leave us out of his limp budget. Because rest assured: we’re here – no ifs, no buts... get used to it.

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‘Completely Inhumane’: Government’s Relaxed Approach to COVID Represents a Regression for Disabled People’s Rights

Published by Anonymous (not verified) on Thu, 24/03/2022 - 8:00pm in

By asking people with learning disabilities and their families to live in a 'constant state of lockdown with no support', the Government is following an approach to the vulnerable that should have been consigned to the past, says Saba Salman

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The Government’s Coronavirus recovery plan is concealing a regression of basic rights, people with learning disabilities and their families are warning.

While most of the population has lost two years since the first lockdown on 23 March 2020, there are signs that this marginalised group has been set back as much as many decades in independence, visibility and support. 

The decision to scrap mask-wearing, social distancing, free testing and nationwide monitoring of the Coronavirus’ spread means that, instead of emerging from the pandemic in a suspended state, people are less confident and active in their communities.

The situation is worse for those who have yet to regain the regular face-to-face health and care support they lost because of lockdown.

The fresh evidence that people are being overlooked in a post-pandemic society follows clear proof that this community was hardest hit during the Coronavirus. This included an initial failure to vaccinate learning disabled people, despite their greater risk of death from the virus, and support staff going without vital personal protective equipment.

Jenny Robinson, an artist from Leeds, is part of the city’s Pyramid art collective. She has a learning disability and is a wheelchair-user. The 28-year-old recently created a digital artwork entitled 'It’s Scary Being Disabled Right Now', reflecting her anxiety about the 'new normal'.

“For disabled and vulnerable people like myself, we've been stuck in for such a long time," Robinson says. "I didn't see my family for over 10 months at the start, for the risk of my health and theirs, which was the worst time in the world. It’s affected my mental health massively since then.” 

Robinson still wears a mask to help her feel safer, but remains fearful of going out.

“People are scared as it is, and now for you to be at college, school, work or shops with people who have COVID, but you don't know they have it, it’s terrifying," she says. "I know we have to learn to live with it but to scrap isolation and then to stop [lateral flow] tests unless you're elderly or vulnerable. It's just such a scary time.”

Robinson is not alone in feeling this way.

A recent report by charity Learning Disability England, drawing on the year-long Coronavirus and People with Learning Disabilities Study, reflects the pandemic’s lasting, negative impact on this group. 

Based on the views of almost 700 people with learning disabilities and 500 family members, the charity’s paper highlights how less than one-third of people with learning disabilities returned to activities or places they went to before the pandemic. Just half said they got the same social care support as before the Coronavirus crisis and less than half had the annual health checks they were meant to.

Families of people with disabilities are also affected. Research from the charity Sibs, which I chair, reflects how how adult siblings are still either partially shielding or still "living cautiously" to protect their disabled brother or sister.

Sarah Walker moved back into the family home in Cheshire to help care for her brother Dan, who has profound and multiple learning disabilities and is classed as clinically extremely vulnerable. 

Given her sibling carer role, Walker does not feel safe returning to the choir she has been a member of for 14 years. She has not had a night out for two years or been inside a friend’s house, used public transport or travelled abroad. Both she and her parents continue to wear masks and carry hand sanitising gel if they go out.

Walker recently launched a petition demanding that the Government continue to provide free lateral flow tests for those most vulnerable to the virus.

“Our family has felt increasingly isolated," she says. "We are used to prioritising someone else’s needs before our own, but it’s incredibly painful to hear the current narrative that the vulnerable should ‘stay at home’ and let everyone else get back to normal.” 

Her brother, who is severely visually impaired, likes to reach out to people and hold their hands. Yet the Walkers have little choice but to continue to socially distance from family and friends, even when this undermines Dan’s ability to communicate.

“It is completely inhumane to ask my family to live in a constant state of lockdown with no support, no ending and none of the community spirit, support and virtual activities that were circulating when everyone was ‘in it together’,” Walker adds.

The lack of inclusion Walker describes is reflected by the fact that politicians investigating the 'do not resuscitate' notices received by learning disabled patients have not fully involved learning disabled people in the inquiry. 

A campaign from charity Inclusion North is challenging this decision. An open letter, backed by more than 260 organisations and individuals, reflects the wider injustice.

It states: “For too long, people with lived experience who are most affected by health inequalities have had little or no influence. The way your group has been set up seem like yet another example of this.” 

The harsh backdrop to these pandemic-related inequalities is that people with learning disabilities also face the potential impact of reforms to the Human Rights Act, the Health and Care Bill reforms, and the disproportionate impact of the cost of living crisis on society’s most disadvantaged.

The answer, say campaigners including those at Learning Disability England, is for the Government to fill the support gaps created by the pandemic based on what people and families need now.

Sarah Walker says that, for families like hers, successfully 'living with COVID' means continued access to lateral flow tests and new post-pandemic guidance on how to calculate risk for different activities.

Today, institutions are – officially at least – relics of the past. But the treatment of certain individuals as an afterthought, along with the lack of visibility and restrictions on people’s lives, are reminiscent of an approach that should be consigned to the past.

As Walker says, “we face a very uncertain future in terms of when we might be able to return to a wide selection of activities that still feel unsafe now that restrictions have been removed... There's also a real risk that we will become even more invisible and undervalued when people can’t see us".

Saba Salman is the editor of ‘Made Possible: Stories of Success by People with Learning Disabilities – In their Own Words’. She is the chair of the charity Sibs, which supports the siblings of disabled children and adults. Her sister Raana has a learning disability and Saba has seen how the loss of face-to-face contact, reduced social activities and anxiety over the easing of restrictions have affected her confidence, wellbeing and independence

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Medicalisation and Hidden Agendas: The Down Syndrome Bill Faces Multiple Criticisms

Published by Anonymous (not verified) on Thu, 10/03/2022 - 9:26pm in

Medicalisation & Hidden AgendasThe Down Syndrome Bill Faces Multiple Criticisms

The Private Members Bill promises to ensure the specific needs of people with Down syndrome are considered – but parents, campaigners and people with learning disabilities are sceptical about what the law will achieve and the motives behind it

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The Down Syndrome Bill excludes other people with learning disabilities, risks failing to achieve its stated aims and has failed to engage with a wide range of expert voices, disability rights campaigners have warned. 

The Private Members Bill, introduced by Conservative MP Liam Fox, aims to ensure that certain health, education, and local authorities take account of the specific needs of people with Down syndrome when exercising their relevant functions. This builds on the Government’s stated commitment to improve outcomes for people with a learning disability.

It has been championed by the National Down Syndrome Policy Group (NDSPG) and has won widespread support from MPs and people with Down syndrome, including activist Heidi Crowter and TV presenter George Webster. 

But some parents of children with Down syndrome and other learning disabilities, people with learning disabilities themselves, as well as experts and campaigners, have expressed reservations about its reach and its supporters. 

Simone Aspis, Director of Changing Perspectives UK, told Byline Times that “this is a bill that has been organised and pushed by parents of children with Down syndrome. No one with Down syndrome on the NDSPG has engaged in debate with us, people with learning difficulties or anyone else. The whole debate is between the parents”.

While the bill’s aims are laudable, many people have pointed out that legislation exists to ensure that people with Down syndrome don’t experience discrimination and can access care and support. The problem is that current legislation is not enforced – something which critics worry won’t be solved by bringing in a new law, as Aspis explained. “We should all work together to improve what we already have,” she said. “The legislation is not being complied with”. 

Further, because the bill does not provide any new funding, it’s difficult to see what it will ultimately achieve for people with Down syndrome and their carers. The Local Government Association said: “Any new statutory duty in the Down Syndrome Bill will need to be accompanied by new funding in line with the New Burdens Doctrine”.

The NDSPG’s website states: “The NDSPG supports the Down Syndrome Bill because current legislation does not lead to the best outcomes for which it was intended and in many cases local authorities do not provide the required support due to a lack of knowledge and understanding about the specific support that is most beneficial to people with Down syndrome”.

The NDSPG provides the secretariat for the newly-formed APPG on Down syndrome. Currently, it has no profile on Companies House and uses crowdfunding platforms to raise money for its activities. It told Byline Times it “has a bank account in its name into which any funding is received. All monies used from that bank account are utilised for the purposes of supporting NDSPG work. All members of the NDSPG are volunteers and no member or charitable organisation to which they are associated receives funds from the NDSPG”.

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The Bill’s Limitations 

Central to concerns about the bill are fears that it reverts to a diagnostic rather than needs based model when supporting people with learning disabilities.

“Legislation by diagnosis and not by need is not going to work,” Stephen Unwin told Byline Times. Unwin is the father of a young man with severe learning disabilities. “What we need is legislation that provides better services and support for all learning-disabled people, not just those with a specific diagnosis.”

Unwin’s analysis is backed by Ramandeep Kaur, whose teenage son has Down syndrome. “What stood out is that the bill was exclusionary,” she said. “The problems people with Down syndrome have with accessing support is the same as everyone else with a learning disability”. 

“The fact that it’s based on diagnosis is problematic,” she continued. “Because even people with Down syndrome, every person is an individual. They’ve all got individual needs, they don’t all follow the same medical and care pathway, or learn the same way or have the same levels of independence. It feels very blinkered”. 

Dr Kieron Smith agrees. His daughter has Down syndrome, and he told Byline Times that “we were moving away” from a medicalised model, instead “saying we want the individual needs of people, whether they have Down syndrome or not, to be considered”. Returning to “a blanket diagnosis approach” he warned, could lead to “a new form of institutionalisation”. 

The NDSPG said on its website: “We see the impact of the bill as actually being beneficial to other disabilities, as with greater recognition of the specific needs – which the bill seeks to achieve – there will be a greater awareness of the need to adapt provision to the needs of the individual”.

“Anything that might possibly improve the lives of people with Down syndrome we would support,” Carol Boys, Chief Executive of the Down Syndrome Association – the oldest and most established organisation supporting people with Down Syndrome – explained. “That’s where we start. But it’s really important to remember that people with Down syndrome are not an homogenous group. Their needs and wishes differ”.


Reason Not the NeedThe ‘Down Syndrome Bill’ is a Retrograde Step
Ramandeep Kaur and Stephen Unwin

Whose Voices?

Carol Boys told Byline Times that “we feel sad we weren’t invited to be involved in the development of the bill. The first we heard about it was on the day of its first reading”.

This lack of debate and conversation with people with learning difficulties has been a feature, according to the parents and campaigners Byline Times has spoken to. Simone Aspis explained how the debate seemed to be happening between parents, not people living with learning difficulties. Dr Kieron Smith said that Liam Fox had not responded to questions, and the NDSPG “didn’t seem to respond to any questions that were being asked by parents questioning the need for the bill”.

“The first time I heard about this bill was on social media,” said Kaur. She was concerned that the Down Syndrome Association had not been included. “It is a key player, its members are the experts in the field”. 

The NDSPG told Byline Times: “We have started a range of initiatives to capture broad views to input to the Government’s consultation process ahead of guidance being issued”. It also directed Byline Times to its FAQs, which state: “a Private Members Bill is promoted by an individual MP the usual consultation process of a standard Bill of Parliament does not apply. The NDSPG worked with Dr Liam Fox MP’s team to provide the initial drafting of the Bill which reflected the discussions with the APPG”.

Some parents and campaigners have also raised concerns that the bill won support from anti-abortion voices – even though the bill does not mention abortion or propose any changes to the abortion laws. 

The Orthodox Conservatives group praised the bill’s passing as “amazing news” and tweeted the bill keeps “innocent life inside the womb” “safe from harm”. This is inaccurate – the bill does not restrict abortion in cases of foetal disability. The organisation has criticised disability rights campaigners for “wanting to abort children with Down syndrome up until birth”. 

The anti-abortion charity CARE has called on MPs “to not be content with supporting this Bill but consider the message being sent through disability provisions in abortion law and repeal them”, suggesting it is being seen as a gateway to rolling back abortion rights. 

The bill has also been supported by the right-wing Turning Point UK – a branch of the pro-Trump, anti-abortion Turning Point USA. Jack Ross, of Turning Point UK and the conservative think-tank the Bow Group, has a brother with Down syndrome and has posed for photos with Liam Fox celebrating its progression through Parliament. His parents co-founded the NDSPG. TPUK’s current Chief Operating Officer Nick Tenconi has also posed with Fox and lent his support to the bill.

Jack Ross and Nick Tenconi, from Turning Point UK, with Conservative MP Liam Fox. Photo taken from social media channels.

The NDSPG told Byline Times that it “has no affiliation with groups mentioned – our website contains details of organisations that we work with as well as those actively supporting the NDSPG”.

One expert in the field, who wished to remain anonymous, explained to Byline Times, “many of the groups involved with the NDSPG have been intimately involved in campaigns to reform the Abortion Act and have opposed prenatal screening to determine whether a foetus has Down syndrome. It feels like Down syndrome is being instrumentalised as an issue by anti-abortion campaigners so they can push back on reproductive rights”.

The campaigner has heard examples where pro-choice parents of children with Down syndrome or other chromosomal conditions have been told they are “dishonouring your child to defend the rights of women”. 

“But there is so much at stake around women’s reproductive rights,” they said. “And one thing that never gets talked about is the reproductive rights of disabled women”.

The bill returns to the House of Lords on 18 March, days after the campaigner Heidi Crowter takes her case to change the laws on abortion in cases of foetal anomaly to the Court of Appeal. She is represented by Paul Conrathe, a Christian lawyer who has previously been involved in anti-abortion legal battles. 

The NDSPG responded to a request for comment by saying it did not feel it was constructive to engage with this article and instead shared its FAQs page. Where appropriate, information from the FAQs page has been included in the above. Liam Fox did not respond to requests for comment.

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The Care Carnage

Published by Anonymous (not verified) on Tue, 01/03/2022 - 8:00pm in

The Care Carnage

As the Health and Care Bill returns to the House of Lords, Penny Pepper dissects why it will hit disabled people the hardest

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As the Health and Care Bill goes back to the House of Lords, disabled and social care activists are fighting to make sure that disabled people are not the hardest hit yet again. 

It makes me philosophical and gloomy, bringing to mind a piece I wrote for the Guardian in 2015, unravelling the profound difference it makes when you have appropriate care support – which in my case allows me some equality in all areas of my life including work. 

In June 2015, we lost the independent living fund (ILF), despite challenging its closure all the way up to the High Court. We now live with the carnage of social care broken apart by constant Conservative attacks. Their relentless ideology grinds on, that somehow you can ‘balance the books’ and make a profit from care.

The only people doing this are the owners of private care homes such as Care UK, backed by private equity firm Bridgepoint Capital, as Byline Times has previously investigated.

Most of the care cost arguments centre around taxpayers’ money and who is entitled. One of the most preposterous arguments used in the case to close the ILF was that the recipients were somehow privileged with our ‘high’ packages of care, and that it needed to be shared out equitably.


The Great Social Care Gold RushHedge Funds and Private Investors areDistorting the ‘Market’ of People in Need
Katharine Quarmby and Sian Norris

This highlights the Conservative way of thinking; the tired utilitarian approach in which some of us cannot expect to have our ‘high’ needs met, otherwise others among us won’t have their needs met at all. How very dare we have ‘higher’ needs, demanding that we don’t sleep in shit and have help to eat?

In response to my Guardian article, a person commented that I was not “affordable” and that my needs for an independent life were “unrealistic”. Another went from the absurd to the (perhaps) innocently offensive, suggesting that disabled people should be put into suitable “villages” where we would all get along with others like us. Fed and watered and placed on the toilet – an archaic model that debased disabled people to little more than badly kept zoo animals. And there’s the rub.

This notion also underpins the decision of more than half of councils to cut care services to ‘life and limb’ only at the start of this year, due to growing numbers of social care staff being sick or isolating because of the Omicron variant. The limited help offered now only includes eating, hydration, going to the toilet and changing continence laundry.

The situation has and will continue to deteriorate.

David Cameron’s Government promised transition payments after the closure of the ILF and efforts to expand the concept of person-centred care. These were not only hollow, they expose indifference.

Inevitably, every new social care paradigm is based around cost implications. Disabled activists are also demoralised that their early initiatives around person-centered choice and control have evolved for governments to commandeer language and intention. 

Assessing Care Costs

The current focus of activism around the Health and Social Care Bill includes the #MakeCareFair campaign, highlighting why the Government’s amendments to how care is funded are unjust.

If charging for care is complicated now, it is only going to get worse if the amendments are passed.

As Inclusion London, the capital’s leading disabled people’s organisation highlights, “those hit hardest by the reforms will be disabled and older people with assets of less than £106,000 who will not be protected against catastrophic care costs”.

The concept of ‘caps’ seems to operate an algorithm that only accountants will understand. According to Janette Rutterford, Emeritus Professor of Finance and Financial History at the Open University, “it means that the less well-off… will suffer the most… Hard-working parents who, through no fault of their own, have illnesses that require substantial care will still see their assets dwindle almost to nothing and will be unable to help their children as intended. The cap on social-care costs thus works out, effectively, as an inheritance tax for these families”.

There is also a fact not widely understood regarding care costs assessments. Never mind capital and income, disabled people who are not in work make a heavy contribution to their care – no matter the level of their benefit.

This means that, while there are subtle differences between how authorities assess contributions, most devour money from the Disability Living Allowance (DLA), Personal Independence Payment (PIP) and Attendance Allowance (AA). Not forgetting the juicy Severe Disability Premium some disabled people receive as part of their Employment and Support Allowance (ESA), which is also gobbled by local authorities.  


A Disabled Person’sLiaisons with PoliticiansA Love-Hate Affair
Penny Pepper

A close friend of mine, for instance, pays £111 per week out of these benefits towards his social care. This is disgraceful and explains why many disabled people fall into the poverty trap – facing decisions of heating over food, therapy over clothes.

Life-long disabled campaigner Dame Jane Campbell, an independent peer in the House of Lords, summed up the hypocrisy of the Health and Care Bill with perfect clarity in a speech in January. She said: “In the Government’s disability strategy, the Prime Minister says… ‘whoever and wherever you are, the spark of your talent and potential can be connected with the kindling of opportunity’, yet this bill introduces a social care means test which drives disabled people into poverty and places a cap on aspiration.”

Over the years, I’ve heard many dark echoes of ‘you can’t expect everything on a plate. There isn’t a bottomless pit or a magical money tree’.

Perhaps not, but the worst capitalist model cannot work either. Activists argue that social care must operate along the lines of the NHS model.

Social care should not be the poor cousin of a welfare state, it should be part of its shining glory. It is normal for all human beings at some point to need social care – and that care should be free. 

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A Disabled Person’s Liaisons with Politicians: A Love-Hate Affair

Published by Anonymous (not verified) on Sat, 05/02/2022 - 1:09am in

A Disabled Person’s Liaisons with PoliticiansA Love-Hate Affair

Penny Pepper explores what a steady stream of inadequate disability ministers reveals about the sorts of people required to really improve disabled people’s lives

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Disabled people have screamed for Boris Johnson to be discharged as Prime Minister, particularly as we – the largest marginalised group in England – now feel like COVID death fodder.

With all restrictions now having lifted in England, Coronavirus guidance has given way to doing what we all think is best. Is the danger of culling by accident or a fortuitous way of controlling social care budgets? It makes us nervous and angry.

When you’ve been an activist for as long as I have, you meet the overlords, and it’s good to assess the changes that we have urged them to implement.

I’ve lived with the significant developments for disabled people including attendance allowance in the 1970s, which morphed into disability living allowance, and then became the Conservative cudgel of the personal independence payment. I remember when the chocolate teapot which was the Disability Discrimination Act was passed 10 years after the race and sex discrimination laws.  

For me, the most profound progress was with the formation of the, sadly dismantled, independent living fund. At long last, it presented a semblance of equality to the daily freedoms that non-disabled people enjoy. It made a difference to who I could meet and where I could go – including upping my game with activism and my ongoing love/hate relationships with a long list of government ministers and their shadow counterparts. 


The Highs and Lows of 2021A Disabled Person’s Perspective
Penny Pepper

My interludes with Boris Johnson began at the Olympic Park in 2012, when he was Mayor of London, at the long-running disability arts festival Liberty, initiated in the days of Ken Livingstone and by the much-missed advisor, disabled activist, poet and artist David Morris

Johnson – and Conservatives in general – have no understanding, let alone love, for disability arts. But, in 2012, the buzz of the Olympics and the Paralympics were high and the Liberty Festival moved to the Olympic Park. As did I, into a freezing little tent with some baby poets who I had mentored.

The rumours flew that Johnson would put in an appearance, and this was the time when promises had been broken concerning new disabled access to train stations. No surprise, but activists did their utmost to keep it in the public eye. The Johnson entourage was so large with bodyguards and press it was easy to prepare a question as it approached.

Irony is sharp with hindsight. As austerity unravelled from 2010, many activists confronted many more politicians – the Conservatives radicalised disabled activism by means of their indifference and apparent hatred of us. We worked tirelessly to be heard and, to some extent, we were and we are. Never have so many of us met so many politicians in person.

The focus has often been on the politicians charged with improving the lives of disabled people. Here, there has not been much to commend.

But at least Labour’s Alf Morris – disabled himself – was the first Minister for Disabled People. The most loved and the most impactful, he brought in the 1970 Chronically Sick and Disabled Persons Act, which was a ground-breaking step on the road to equality. Reading an overview of his life and the legislation he initiated is astonishing and carries resonance to this day – from blue badges for parking to mobility allowance, equal access and education. 

I’ve been enraged by those who have taken on the equivalent roles since. 


‘Life Unworthy of Life’The Lessons of T4
Stephen Unwin

The worst have appeared since the start of austerity. This includes – but is definitely not limited to – Maria Miller, who was responsible for the destruction of the independent living fund; and Esther McVey, a proponent of benefit-slashing policies such as the bedroom tax, who also upset my mum when she told her in a patronising letter that McVey knew many disabled people enjoyed being in care homes vis-a-vis the closure of the independent living fund.

There was also Justin Tomlinson who had a thing against disabled people’s organisations – an important qualification for this excuse of a post, because it appears you must know as few actual disabled people as possible. 

Labour’s former Shadow Chancellor John McDonnell is the only politician I’ve ever met who I believe comprehensively understood the ‘social model’ of disability

But what about my encounter with Boris Johnson? Through that September 2012 drizzle, he loomed close – and he is a big presence. We breathed the same air for some uncomfortable moments, as three larger bodyguards blocked my access. I called out my question, polite but firm.

He was chortling and up close against a food stall. We were roughly a metre apart. Perhaps there was a nanosecond of eye contact. But the muscle was having none of it and stepped sideways to obliterate my irritating crippled presence. 

Johnson played to the press – then as now – and moved on without acknowledgement. 

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How the Government Forces Disabled People into Poverty and Despair

Published by Anonymous (not verified) on Fri, 04/02/2022 - 4:19am in

How the Government Forces Disabled PeopleInto Poverty & Despair

Private firms are used to deny assistance to vulnerable people, many of whom overturn the decision on appeal, reports Chaminda Jayanetti

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For more than a decade, we have seen horror stories about the Government denying benefits to disabled people – in the worst cases resulting in tragic deaths.

Thanks to changes first introduced by the last Labour Government and heavily accelerated under the Conservatives, the disability benefits system became much more punitive.

Tough assessments were introduced that disability activists have long argued exclude many people with severe needs.  

The Government – and the private companies the Government pays to carry out the assessments – consistently reject these accusations. 

But official figures show that every day legal tribunals are overturning dozens of decisions made by the Department for Work and Pensions (DWP) based on assessments by private firms Atos and Capita regarding the Personal Independence Payment (PIP) disability benefit.

More than three-quarters of the 130,000 PIP appeals at tribunal in 2019/20 and 2020/21 were successful – 100,841 of them. During the first half of 2021/22, that declined to a still-high 69%. Successful claimants will often be awarded back payments, but that only comes after months of waiting, with many having to go without before winning their appeal.

In addition, many cases don’t reach tribunal because the DWP ‘lapses’ the appeal, revising their decision in the claimant’s favour after the appeal is lodged. In 2020/21, 35% of PIP appeals were lapsed before they reached tribunal, up from 29% in 2019/20.


The Highs & Lows of 2021A Disabled Person’s Perspective
Penny Pepper

Anela Anwar, chief executive of campaigning charity Z2K, said: “These figures show the unacceptably high rate at which disabled people and people with health conditions continue to be refused the Social Security that they need to survive. Z2K’s own success rate at appeal in 2020 was 93%.

“Challenging these incorrect decisions at a tribunal is incredibly stressful and time-consuming for disabled people, which is why many don’t go through with it. Assessments must be fundamentally reformed so that they’re done right first time, and all disabled people and those with health conditions receive the income they are entitled to.”

The DWP requires PIP applicants who want to challenge a decision to go through a process called Mandatory Reconsideration (MR) before they can appeal at tribunal. The MR process simply asks the DWP to reconsider its decision. 

Between PIP’s launch in 2013 and mid-2021, less than 30 percent of MRs resulted in any change to the PIP award, although in the last couple of years this has risen to around 50% after the process was changed in 2019. This is still a much lower success rate than tribunal appeals – but since 2013, fewer than half of those applicants who don’t succeed with their MR then proceed to a tribunal. Most simply give up. 

John, who is 49, has depression and OCD that can manifest in paranoia, forgetfulness and extreme lethargy, among other effects.

“How it affects me from day to day varies, but a lot of the time I’m not motivated, and I can’t concentrate to do anything or eat”, he told Byline Times.

“When I’m in a void, I just can’t do anything. If you can string a sentence together people think, ‘yeah, you’re fine’. It doesn’t work like that.”

He finds himself lacking energy and focus and unable to do daily tasks. “It’s a blankness, it’s kind of like a void. And when I have a void, it affects my appetite as well. It literally is like, you can’t concentrate to do things. I get panic attacks, I don’t go out a lot, hardly ever actually. I have a good friend that does a lot of the stuff for me.”

His paranoia in unfamiliar environments can lead him to randomly swear on public transport, hindering his ability to travel more than short distances. 

“Literally I can’t get out of the house a lot of the time because of my panic attacks, and also because of the inappropriate behaviour. I can’t go on buses, I usually have to come off them.” 

John started working when he was 13 and did so until his life fell apart. When he was aged 30 in 2003 he was diagnosed with HIV, and then his grandfather and father died within two months of each other. Because his dad was a single parent, he lost his house as well, leaving John homeless.

“The whole thing just went poof”, he said. “It was catastrophic psychologically because my father was a single parent, I was very close to him.

“I think it created a catalyst – I was having issues before then but this was like the final, kind of pushed me over. I think it just cracked.”

While John claimed the Employment Support Allowance (ESA) disability benefit, he didn’t apply for PIP until 2019. After his PIP assessment, he was awarded the standard rate for disability living – but he was given zero points, and thus no money, for mobility, despite his problems on public transport. 

He went through the MR phase, but this still gave him no points for mobility, while raising his score for disability living by two points.

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Having been failed by both the PIP assessment and the MR process, he was left with no choice but to go to tribunal. He got in touch with Z2K via the Citizens Advice Bureau, and they took his original application and put it into more legalistic language.

“I can’t do that because I don’t have clarity of thought – and I’m not a lawyer. You had to be a lawyer to actually get through the system, to put it in such a way where they understand it.”

The tribunal was due to be held over Zoom due to the pandemic, but then he received a call from the clerk. “The judge had actually looked at all the submissions and was agreeing to give me this mobility component.”

On top of that, John’s disability living element was also raised from the standard rate to the enhanced rate. In addition, the higher PIP payment means his ESA payment has also gone up in response. In total, John received around £3,000 in backdated payments for PIP and ESA.

“The reason why it was different on the appeal was the fact that you had a solicitor looking at their pointing system and then saying ‘right, ok’.

“When I’d had the phone conversation for PIP initially, they’d said that I was eating several times a day. I wasn’t. I didn’t say that at all.

“The solicitor got me to do a food diary, and when I did remember a lot of it was like literally ‘water’. ‘Nothing’ or ‘sandwich’ here, or when my friend came over he’d put a meal on for me.”

In some ways John was one of the lucky ones. One of Z2K’s clients died late last year after spending two years waiting for a tribunal hearing for his appeal against the DWP’s refusal of his PIP application – an appeal that will now never take place. 

“It’s not a very nice experience, to be assessed. You feel like you’re basically tested whether you’re lying or not … You say one thing and literally in the report it says completely the other”, said John.

“There are things which you get from the DWP where you think ‘am I going mad or something?’ Which you’re not, you’re not, a lot of the time they’re just making up what they want. And that’s not an exaggeration, I can assure you.”

A spokesperson for the DWP said: “For the majority of PIP claims, we get decisions right and all assessments are carried out by healthcare professionals trained to consider the impact of someone’s health condition or disability, but we are exploring what more we can do so the welfare system better meets the needs of disabled people through our Health and Disability Green Paper.”

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How the TfL Funding Crisis Will Leave Disabled People Stranded

Published by Anonymous (not verified) on Wed, 02/02/2022 - 11:27pm in

How the TfL Funding Crisis Will Leave Disabled People Stranded

As Government funding for London’s transport network dries up, so do promised improvements to access – with just 33% of the Underground step-free

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As a wheelchair user, IT consultant Jeff Harvey relies on using lifts to access the Underground.

“I always have to plan alternate routes depending on anytime there’s a lift in my journey,” he said. Unexpected lift closures can add an hour on to his travel time.

Currently, 90 tube stations on London’s Underground network are step-free – equating to just 33% – meaning that, when lifts are unavailable, people unable to use steps must find an alternative route or go to another accessible station by taxi at the cost of Transport for London (TfL).

In September, an unreported lift closure at Liverpool Street Station delayed Harvey by an hour on his way home to Walthamstow after visiting Liverpool. “If they’d updated this information, I’d have seen the lift status and known to get off at Moorgate which is now step-free and rolled to Liverpool Street in 10 minutes,” he wrote in a Twitter thread relaying the occasion. 

TfL recorded 10 lift breakdowns at Liverpool Street Station between January and November 2021. Lifts in 44 stations across the London Underground network broke down 10 or more times during those 11 months, with lifts in five stations breaking down more than 50 times.

In total, TfL recorded 1,347 lift breakdowns across 85 Underground stations from January to 12 November 2021.

In 2016, the Mayor of London promised £200 million to make 40% of the tube network step-free by 2022. But, following a slump in numbers using the Underground during the Coronavirus pandemic, TfL is said to be facing a funding gap up of to £1.7 billion over the next financial year and is set to axe step-free upgrades if additional funding is not secured. 


Government’s New DisabilityStrategy is No Strategy At All
Penny Pepper

Step-free improvements in at least three tube stations have already been paused owing to lack of funds. During Mayor’s Question Time last February, Sadiq Khan said that work to make Burnt Oak, Northolt and Hanger Lane stations step-free had been “paused pending further discussions with the Government on the funding support TfL needs following the impact of Coronavirus on its finances”.

A Department for Transport funding package worth more than £1 billion is due to run out this week, following a six-week extension to the terms in December, when Khan warned that TfL’s financial situation could lead to closing a tube line and slashing 100 bus routes. 

A Department for Transport spokesperson told Byline Times that the Government has “repeatedly demonstrated its unwavering commitment to supporting London’s transport network” with more than £4 billion in emergency funding.

“We continue to discuss further funding requirements with TfL and the Mayor, and any future support provided will continue to focus on moving TfL back onto a more financially sustainable footing, in a way that provides value for money and is fair to taxpayers across the country,” they added.

TfL confirmed that, if sufficient long-term funding is not secured, “investment in further improving step-free access at stations would be impacted”.

A spokesperson told Byline Times: “This would likely mean that no step-free access schemes, other than those which are currently in construction, would be completed – unless they were funded by third parties.”

Even before proposed cuts, TfL’s accessibility improvements miss the mark.

Step-free improvements “don’t always create level access between the platform and the train”, according to the TfL website, meaning that a manual ramp must be positioned to allow wheelchair users to board trains. 

“We’ve got to get the Government to legislate for what’s called ‘level boarding’,” said Ian Cook, who campaigns for step-free access in all stations across the country. “They’re building stations at the moment and they’re saying they’re step free stations – they are to the platform, but not the platform to the train.”

Organising ramps creates a mental strain on passengers with disabilities. Cook said it is “humiliating” for disabled people to not be able to get off trains. 

“A lot of people find it really discouraging, a real mental stress, that they have to fight all the time,” added leading disability campaigner Alan Benson.

People with disabilities also still face issues traveling by bus, despite all London buses having low-floors, access ramps and a dedicated wheelchair space.

“Every time I get to a stop to use the bus, my stress levels go up because I don’t know if the bus coming is going to have someone in the space already,” said Jeff Harvey. 


‘Life Unworthy of Life’The Lessons of T4
Stephen Unwin

He told Byline Times that drivers often fail to ask non-disabled people to vacate the dedicated wheelchair space or that people can be unwilling to move their luggage or prams from the space.

Slashing bus routes could be detrimental, added Benson.

“If there are fewer buses, the buses are fuller so the chances are I’m not going to be able to get on,” he said. “The implications of these cuts are much bigger than [step-free] access. It’s also affecting the little things. Access is a lot about publishing the right information.”

But a TfL briefing paper from November suggests that data and technology improvements, including upgrades to planning step-free journeys, could be slashed.

The transport network already fails to provide all information passengers with disabilities find useful. The website Up Down London, which tracks lift closures at tube stations, was created by disability activists who wanted to collate live information on TfL lift closures in one accessible place. 

In the 2018 Inclusive Transport Strategy, the Government promised to create a transport system that offers equal access for disabled passengers by 2030. The national Disability Strategy published last July reasserted its commitment to improve accessibility on transport across the nation.

“All these strategies, all these targets, disabled people are quite exhausted by them,” Alan Benson told Byline Times. He wants to see action that backs up Government strategy. 

But in London, the question remains as to how TfL will fund this action. 

“[It] would make a huge difference in my life,” said Jeff Harvey. “That funding cut… has me worried.”

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