OPINION: Disabled and Vulnerable People should not be collateral damage in efforts to return to pre-pandemic ‘normal’

Image by rollingstone64 at Flickr 

One of the things that has frustrated me the most throughout the Covid-19 pandemic is that the problems experienced by many disabled people are only ever recognised and addressed when they affect the wider population. Many of the same issues I raised about so-called ‘Freedom Day’ in July 2021 can be seen in the current Covid-19 ‘booster’ vaccination drive and the arguments made against introducing additional restrictions before Christmas and New Year. Disabled people, those with long term health conditions and pensioners have had to wait the six months minimum time period between second and booster jabs. Many have been on waiting lists for appointments due to the closure of vaccination centres, with some even having to join long queues (even with a booked appointment) before finally getting the life protecting inoculation. As with the second jabs, this minimum time limit was reduced and more vaccinators found (this time including the armed forces) because the government wants to protect the wider population. 

Since restrictions were lifted in summer 2021, it has often felt like many people are acting as if the Covid-19 pandemic never happened. Businesses have been urged by the UK government to get staff back into the office, and the furlough scheme ended. Those on the political right have become louder and louder in their claims that Covid-19 is nothing worse than a cold or flu, and that many of the rules and policies in place to protect citizens were an unnecessary overreaction. There have also been a significantly large number of people who have chosen not to get vaccinated, citing lack of scientific evidence or conspiracy theories (such as vaccines containing microchips so people can be tracked). Most of the mandatory safety measures previously in place have now been reframed as guidance or personal responsibility.  

As a disabled woman, who is in the vulnerable category according to the NHS, it was particularly stressful to witness the visible reduction in the number of people wearing masks, especially in England (in contrast to our visits to Northern Ireland, where people have generally continued to wear masks in enclosed spaces). Mask wearing is again mandatory in indoor public spaces and public transport in England, with businesses required to take “reasonable measures” to ensure compliance. However, many people still do not follow these rules and are abusive when asked to. People wearing masks are still being insulted in the streets, which raises questions about whether some people have abdicated their own personal responsibility to limit the spread of the virus.  

We are now entering a period in which more restrictions on personal freedoms are necessary in order to limit the spread of the Omicron variant. Once again hospital admission rates are increasing rapidly, as the daily infection rate rises exponentially. The NHS is under enormous strain, particularly due to staff absences, with hospital trusts across England declaring critical incidents and troops sent to plug staffing gaps in London. But the government continues to emphasise the importance of personal responsibility and vaccination to mitigate the risks of infection, with a reluctance to implement more stringent measures. Last month, there was a large Tory rebellion against the so called ‘Plan B’ measures, with one MP even comparing the introduction of vaccine passports to living in Nazi Germany. This week the Prime Minister also said that he hopes that England can “ride out” the current Omicron wave “without shutting down the country”.

Disabled people should not be collateral damage in efforts to return everybody else to the pre-pandemic normal. Those who complain they cannot abide by measures designed to protect the lives of citizens don’t seem to have a problem when it comes to creating barriers to inclusion for disabled people, whether it be in the workplace, entertainment venues, education or housing. Indeed, many of the same politicians who voted against COVID-19 safety measures supported austerity policies which made life intolerable for many disabled people. Perhaps it’s time that policymakers focus on the few, not the many for a change… 

This originally appeared in VIEWdigital.

Unlike Britney, many women remain unfree

image by Like_the_Grand_Canyon

There has been a lot of media coverage about the plight of women in Afghanistan after the Taliban took control of the country in August 2021. Yet, the collective hand wringing over this issue overlooks the barriers that many women still face in the ‘west’. 

Clearly, the vast majority of women (and to a certain extent girls) in ‘western’ states can exercise certain core human rights, including the right to have an education, own property and have money in their own right. However, women with disabilities or long-term health conditions are often denied the right to make their own decisions over many aspects of their life, such as healthcare, managing their finances and reproductive rights. This is typically justified as being in the best interests of the woman, who needs to be taken care of and therefore cannot be trusted to make her own decisions.  

The most high-profile example of this is the ongoing legal case in California regarding Britney Spears’ conservatorship, which saw her father Jamie granted the power to control both financial and personal aspects of her life. It was first set up following a period when her behaviour was deemed erratic (such as shaving her head and assaulting a photographer), culminating in two involuntary stays in a psychiatric facility. All aspects of her life are monitored and tracked by others, from coffee purchases to phone calls, with recent revelations that her bedroom was bugged and personal phone calls, had been covertly recorded. Her father was paid $16,000pm (adding up to an eyewatering $2.4million since the conservatorship was set up in 2008) while also benefiting financially from her ticket and merchandising sales. This was characterised as a “hybrid business model” by former co-conservatory Andrew Wallet. While Jamie has now been removed as conservator, Britney’s conservatorship continued until it was finally terminated on 12 November 2021. She has since spoken of her joy at being able to do “little things” such as withdraw her own money from an ATM.

Would a conservatorship have been set up for Britney if she had been a man? We have seen many instances of male celebrities behaving erratically and dangerously (often due to being under the influence of drugs or other substances) but they never face such drastic measures. It is also deeply unsettling that Britney was never assessed for post-natal depression or psychosis in the run up to her conservatorship been putting into place. As she was divorced, her father (from whom she was largely estranged previously) was the one who stepped in to manage her affairs. She had also just been in a custody battle for her children, and so was in a very vulnerable position. Conservatorship is seen as a final option, with other ways to enable disabled people retain some control over their lives and support them to make their own decisions. Why were these not explored for Britney? What would be seen as coercive control for women without disabilities is viewed as being caring and looking out for the interests of disabled woman. Going forward, Britney faces the prospect of her every decision being scrutinised by a global audience– when she was legally allowed to drive again in October she said that she was “fearful of doing something wrong” and was chased by paparazzi “like they want me to do something crazy”.

Nevertheless, it was ironic that on the same day in June 2021 Britney’s petition for her father to be removed from the conservatorship was denied, while disgraced comedian Bill Cosby was released from prison after his conviction for sexual assault was overturned due to a legal technicality. Is it the case that female voices are ignored and male voices given more prominence? Did Jamie Spears’ words have more weight than Britney’s, and Cosby’s non-prosecution deal with a previous (male) prosecutor more important than justice for his female victims? Cosby has not apologised for his actions, never acknowledged any wrongdoing and previously denied parole because he refused to participate in sex offender programmes while in prison.   

It is therefore imperative when we consider the shocking changes to the lives of women in Afghanistan that we do not forget the way many disabled women, and their ability to be members of society, have also been controlled by men. Those who live in glass houses should not throw stones.

Time for disability hate crime to be taken seriously

Image by Wokandapix from Pixabay 

During Hate Crime Awareness Week, there has been much debate over whether misogyny should be made a hate crime in the UK. What has not caught as much attention is the increase in disability hate crime over the last 12 months. The latest data for England and Wales shows there were 9,208 incidents recorded by the police, equivalent to around 25 incidents every day and a 9% increase on the preceding 12 months. Less than 1% of these were charged or forwarded to the CPS. In Northern Ireland, disability hate crime incidents have also risen during this period (from 86 to 112), with the number of crimes increasing from 63 to 73. Victim Support had a 22% increase in the number of people seeking support for disability hate crimes over the past 12 months as well. 

Disabled people experience hate crime differently than other victims due to the nature of their lives. Many require help from others to complete everyday tasks and so already don’t have control over all aspects of their lives. This leaves them vulnerable to so called ‘mate crime’, where a disabled or vulnerable person is taken advantage of and/or bullied by a perpetrator – this may be theft, financial abuse such as taking them out to spend their benefit money when they get paid, or ‘cuckooing’ their property to use it for drug dealing or other crimes. They are also frequently subject to online abuse, as demonstrated by the 51.6 % increase in disability hate crimes which occurred online in 2020/21. An additional fear is that an online abuser will find where the disabled person lives and then come to physically abuse them, which they cannot escape from if they are stuck at home. 

A pattern of violence seems to be a common thread in disability hate crimes. 44% of hate crimes towards disabled people in England and Wales were categorised as violent (i.e. involving assault of possession of weapons), an increase of 4.4% compared to the preceding 12 months. Despite this alarming statistic, hate crime against disabled people does not seem to be treated as seriously as for other forms of hate crime. In England and Wales, CPS guidance on prosecuting disability hate crime states that, “There is no offence of stirring up hatred based on disability, which contrasts with the position in relation to offences of stirring up hatred on grounds of race, religion and sexual orientation.” Violence or abuse often happens behind closed doors such as in care homes or day centres, but when disabled people try to bring it to the attention of the authorities they are portrayed as either being too sensitive or having misunderstood the situation. The voices of disabled people are often belittled. We can see this in the case of Fiona Pilkington, who killed herself and her disabled daughter after they had been abused for over a decade by local youths, receiving no help from local police despite complaining to them 33 times. An Independent Police Complaints Commission Reportfound that Leicestershire police’s main failing was not identifying the incidents and pattern of abuse as hate crime (other examples include Brent Martin and Raymond Atherton). Many disabled people believe that there while there are social sanctions if someone is abused because of their race or sexuality, this is not the casewhen it is a disability hate crime. It should be noted that the police officers involved in the Fiona Pilkington case faced misconduct proceedings, all were later cleared – some may wonder if this would have been the case with other minority groups. Tragically, cases such as these are unlikely to be isolated incidents for as long as the authorities fail to take disability hate crime seriously. Believing disabled people who report abuse would be a good start, followed by legislation that enables more of these cases to be successfully prosecuted. It’s time for policymakers to finally make good on their promises to protect the most vulnerable in society. 

This piece first appeared in View Digital

Disabled people forgotten again on ‘Freedom Day’

“Lockdown Protesters” by michael_swan is marked with CC0 1.0

In March 2020, we were advised to stay at home to protect the NHS and those deemed ‘vulnerable’ to the COVID-19 virus. Mutual aid organisations sprang up across the country to ensure that nobody was left unsupported or without vital resources such as food. Many people spoke to their neighbours for the first time and made eye contact when passing others during the one hour permitted outside for exercise. We had ‘clap for carers’ to show our appreciation for the vital work of key workers. There was a sense of the country pulling together to take care of each other and, in particular, those who were elderly, had a disability or long-term health condition or their carers.  

And then it all changed. Mask use declined as people grew tired of wearing them. The real pivot in attitude, however, was when Dominic Cummings refused to apologise for his infamous trip to Barnard Castle to “check his eyesight”. It suddenly felt like a spell had been broken. Grumbles over lockdown became increasingly louder, with some using Cummings’ actions to justify their own law breaking.

Fast Forward to now. Since the vaccination programme began to be rolled out at the start of January 2021, there have been increasing calls for restrictions to be lifted (as well as anti-vaccination protests). Where once we had clapped for the NHS, people now attack healthcare workers because they want their second jab early so they can go on holiday. Watching Euro 2020 football matches, many fans in the stadia or watching in pubs were not wearing masks (those that did often wore them incorrectly). Maria Van Kerkhove, the WHO’s COVID-19 Technical Lead, tweeted it was “devasting” as she was “watching transmission happening in front of my eyes”. 

Since the announcement of ‘Freedom Day’ the government has emphasised that wearing masks and maintaining social distancing is a “matter of personal choice”, although Boris Johnson has urged people to exercise “extreme caution” in his most recent press conference. Employers are increasingly pressurising staff to return to work, reversing the freedom many disabled people and carers had by being able to work remotely and giving many the impossible choice between work or death. At the same time, attacks on employees for enforcing mask wearing will likely increase if their establishment continues to require customers to wear masks. 

Where does this leave the ‘vulnerable’ (a contested term) who the government urged people to protect? The emphasis has switched from wider society to individual protection and responsibility. There have been a number of reports that when the government were making their reopening decisions they had not considered those who have been shielding since March 2020. The most recent government guidance advises those who are “extremely clinically vulnerable” to take extra measures such as limiting close contact with others, although it stops short of saying they should continue shielding. When announcing this change, Health Secretary Sajid Javid stated that it was the “right time” for the UK to get “closer to normal life”, despite Dame Sarah Gilbert, who led the team who created the Oxford Astra/Zeneca team, warning that the ‘vulnerable’ may need to start re-shielding if all measures were removed. The government’s response is astounding given that people with disabilities or underlying health conditions make up the majority of people who have died from COVID-19. One study found that 58% of those in England who died from causes involving COVID-19 were disabled. 

Disabled people have been consistently forgotten in all major policy decisions from the very beginning of the pandemic with no serious plan in place, such as who was placed on the ‘vulnerable’ list to qualify for online food orders or additional assistance. The government seems to have initially decided to focus on herd immunity and now on vaccination as the primary method of controlling COVID-19 and re-opening society fully. However, children and many working age people with disabilities have been left out of the vaccination rollout or not placed in the highest priority groups, which was highlighted by BBC DJ Jo Whiley when she campaigned for her sister Frances, who has learning disabilities and diabetes, to be vaccinated. It should also be noted that those deemed ‘vulnerable’ are not a homogenous group and so may not all view the rule changes and full reopening in the same way, and so all voices need to be heard. 

‘Freedom Day’ will mean further confinement, fear and anxiety for many people. Nevertheless, the government continues to stand by its timetable. What is the price they are willing to pay and how many lives will be sacrificed in the name of ‘freedom’?

Has the pandemic shone a light on income disparities in the UK?

The COVID-19 pandemic has led to unprecedented restrictions being placed on the everyday lives of people in the UK. Social distancing guidelines have meant that we have been unable to go wherever we want, or meet and see people in large social gatherings. These changes have been easier for some than others, as demonstrated by the regular ‘anti-lockdown’ protests in cities and towns across the country. While for most people the last 14 months have been a steep learning curve, people with disabilities and long-term health conditions, and their carers, are well accustomed to experiencing limits on their mobility, struggling to get access to essential services and juggling caring responsibilities with work. Many are also too familiar with the struggles of living on a low budget and navigating a complicated benefits system.

There were initial signs that the pandemic had illuminated the experiences of disabled people in the ‘old normal’, especially during the first lockdown period. One key area was regarding the social welfare system. There was an increase of 2.7 million people (90%) claiming Universal Credit (UC) between 12 March 2020 and 8 October 2020, and a doubling of the number of UC payments in London and the surrounding regions. As more people came into contact with the benefits system for the first time, many of the problems experienced by legacy benefit claimants (such as tax credits) and UC became more widely recognised. Most notably, it was not well-known that the first UC payment is typically made 5 weeks from the initial claim. 

There had also been a widespread assumption among many people that benefits had become ‘too generous’, fuelled by government and media framing during the ‘austerity’ drive to reduce government spending by shrinking the welfare state. This was seen in 2010 when then Chancellor of the Exchequer George Osborne justified further cuts because some people “believe that living on benefits is a lifestyle choice” so what is needed is “[a] welfare state where it always pays to work”. However, with wider demographic claiming UC there has been broad recognition that benefit rates are much lower than average incomes. Until March 2020, a single person aged over 25 received a ‘standard allowance’ of £317.82 per month (pm) UC, or £498.89pm for a couple (help with rent is an additional application and is capped at a set local rate). In comparison, the median weekly income for full time employees was £586 per week (pw) in April 2020, and the national minimum wage at £8.72ph (age 25+). In response to political and public pressure on the level of support being provided by the government, the current Chancellor Rishi Sunak increased the UC standard allowance by £20 pw resulting in a single person over 25 now getting standard allowance of £409.89 pm, and a couple £594.04 pm. While this narrowed the gap, it is still a substantial difference especially when recent ONS figures show that the cost of living under the consumer price index continues to rise, with inflation growing from 0.3% in November to 0.6% in December 2020 (due to an increase in clothing, transport and petrol prices). The Joseph Rountree Foundation also found that if the £20pw uplift is withdrawn at the same time as the furlough scheme ends, 500,000 extra people (including 200,000 children) would be pulled into poverty. Moreover, the decision to increase these benefits was a tacit admission by the government that it was difficult for people to live on the initial rate.

While the increases in UC and tax credits were welcomed by many, there remain 2.5 million people on legacy benefits such as Employment Support Allowance (ESA). The majority of these claimants are disabled or have long-term health conditions, whose exclusion from this uplift is currently being challenged by way of judicial review in the courts. Furthermore, government statistics show that before the pandemic the proportion of disabled people living in poverty was 23% before housing costs (BHC), and 27% after housing costs (AHC), compared to 15% and 19% respectively for families without a disabled person. However, this does not take into account the additional costs that having a disability or long-term health condition entails. The Social Networks Commission found that half of all people in poverty (7.2 million people) live with someone who has a disability, and while 17% of families live in poverty this rises to 28% for disabled families. 

Why does the government continue to discriminate against disabled people when it comes to welfare provision? At the start of the pandemic everyone was told to stay at home to protect the most ‘vulnerable’, NHS volunteers were sought to provide additional help and mutual aid groups sprang up to help those most in need within local communities. However, no additional money was allocated, there was little to no protection for care homes, and working age disabled people were often not given priority to health services or vaccinations. Now that everything is being unlocked as part of the government’s ‘roadmap’, disabled people are once more feeling left behind and disregarded. While we were previously hopeful that the pandemic might produce long-term empathy towards those with disabilities (especially of working age), a return to the ‘old normal’ of indifference and, in some cases, hostility appears more likely.

IWD and WHM: Interview with Dr Anne Graefer (Gender IQ)

Throughout March the Women’s Research Centre (WRC) are talking to a number of women who will share their expertise, specialism and experience to mark International Women’s Day and Women’s History Month. Our first guest was Dr Anne Graefer, who is a Researcher and Founder of GenderIQ and provides training, workshops, lectures and advice on all aspects of gender, diversity and inclusion. A key part of the conversation she had with Sarah Reilly, the WRC’s Director of Research, was on the differences in attitudes towards women in the UK (where Anne has studied, researched and worked) and Germany (where Anne is from and now lives) and how their role and contribution in society is viewed and how gender roles have changed. A large part of this focused on the world of work such as the gender pay gap and the impact of having children on a woman’s career. Covid-19 was also a dominant topic of conversation, in particular how it has regressed the progress of women and has reasserted many traditional gender roles such as who has primary caring responsibilities or home-schooled children during the pandemic.  

The conversation with Dr Anne Graefer was fascinating and raised many important issues. We hope to explore these in more detail and provide a more thorough examination of them as part of our ‘Is Inclusion an Illusion?’ series, so watch this space.

If you are interested in learning more about what GenderIQ offer, please check out their website or contact Dr Graefer via TwitterInstagram or LinkedIn

International Women’s Day and Women’s History Month

March is Women’s History Month and International Women’s Day is on 8 March. The IWD campaign theme for 2021 is a call to challenge gender bias and inequality, and to seek out and celebrate women’s achievements. To mark WHM, we have organised a number of interviews with women who will share their expertise and experience in related areas. Guests include Dr Anne Graefer (Research and Founder of GenderIQ), Molly O’Brien (disability advocate and researcher), and Zinthiya Ganeshpanchan (Zinthiya Trust).

John Coster and I discuss IWD in the video below:

Is Inclusion an Illusion? Issue experts discuss International Day of People with Disabilities

Disability Newsroom 3 December 2020

Sarah Reilly & John Coster

International Day of People with Disabilities 3 December 2020

The Women’s Research Centre held a virtual Newsroom to mark the International Day of People with Disabilities on 3 December 2020. The IDPwD (originally called the ‘International Day of Disabled Persons’ until 2007) was created by the UN in 1992 to promote a wider understanding of disability, advance the rights of disabled people and address the inequalities they face. It also aims to mobilise the support of wider society to achieve these aims and to enable disabled people to live with dignity. The theme for 2020 was split, with the IDPwD website concentrating on ‘not all disabilities are equal’, whilst UNESCO focused on ‘Building Back Better: towards a disability inclusive, accessible and sustainable post COVID-19 World’. These themes do overlap in many ways, which we highlighted in our interviews with Molly O’Brien, Hannah Webber and Dr Tiffany Webster.  

Hannah Webber 

Hannah Webber is the Disability Sport Officer at the University of Nottingham. She has been nominated for the BUCS (British Universities & Colleges Sport) Unsung Hero Award, as well as the University’s Diversity and Inclusion Award. Hannah has been instrumental in developing and widening access for students of all abilities, and promoting wider equality and inclusion in the University’s 45 sports clubs and societies through initiatives such as the Rainbow Lacescampaign. We discussed how sport is not just about fitness, but has wider social and holistic benefits such as building confidence, improving mental health and providing social interaction and support. Hannah spoke about the supported fitness scheme she established at the University, which involves a student being assigned a fitness instructor ‘buddy’ to assist them. This can be tailored to suit the needs of the individual, such as meeting them at the door of the gym as well as helping them to use the equipment. We also had a broader discussion about disability sport, and how Hannah tries to encourage people of all abilities to try new forms of exercise, and not just have a focus on elite sport. The interview concluded with Hannah’s account of how COVID-19 has changed the way the University delivers these support services.

Full interview here

Interview with Hannah Webber, 3 December 2020

Molly O’Brien

Molly O’Brien works for Deaf-initely Women in Derbyshire, and is passionate about disability rights and related issues. We spoke to Molly about how accessibility issues have been exacerbated during the COVID-19 pandemic. This included the exclusion of disabled people, especially those with sensory impairments, from important COVID-19 information; for example, the Westminster daily briefings have had a British Sign Language Interpreter present and shielding letters have not being made available in accessible formats. The inaccessibility of wider society was also discussed, such as infrastructure and housing. We also talked about the depiction of disabled people in the media e.g. disabled characters being played by non-disabled actors, which we will explore further during a planned event later in the year.

Full interview here.

Interview with Molly O’Brien, 3 December 2020

Dr Tiffany Webster

Dr Tiffany Webster is the Service Manager of the Autism Information and Advice service, which covers the county of Derbyshire. They provide a holistic service for individuals living with autism, as well as parents, carers, professionals, friends and relatives who support them. As they are based at Citizens’ Advice Mid Mercia they provide advice on all aspects of a person’s life including housing, neighbours, benefits, finances. They have delivered Autism Awareness Training to 300 people working in relevant organisations in 2020, covering issues such as the Autism Act changes due to come into force this year. We discussed how services and organisations are predominately ‘neuro typical’ and how important it was for service providers to become more autism aware. Key issues include the use of language, auditing facilities and space, and amending policies and procedures. However, it was agreed that the priority should be to respond to what each person with autism wants and requires and to recognise that every person had different needs. We also considered the portrayal of people with autism in popular culture and how there has been a movement towards better understanding and inclusion. Nevertheless, those living with autism are still incorrectly categorised as if they have other more commonly recognised learning difficulties, special educational needs and mental health conditions. We also discussed the importance of preventing a repeat of the shutdown of the respite and care services that people living with autism rely on.

Full interview here.

Interview with Dr. Tiffany Webster, 3 December 2020

Throughout the day we acknowledged the 25th anniversary of the Disability Discrimination Act, which put into law measures to combat the widespread discrimination experienced by disabled people, such as the requirement to make reasonable adjustments by making a building wheelchair accessible so a physically disabled person could visit, work or live there. However, although the DDA has been replaced by more comprehensive laws by the Equality Act 2010, many of the rights that disabled people were fighting for remain elusive. Indeed, in some cases, they have regressed due to the austerity measures introduced by the Coalition and Conservative governments since 2010; these drastically reduced many of the services that disabled people rely on to live independently and with dignity (such as the abolition of the Independent Living Fund and the changes in social welfare including replacing Disability Living Allowance with Personal Independence Payments). These are issues we will follow up on in future WRC events as we consider whether inclusion is an illusion– stay tuned!

Welcome

Welcome to the Women’s Research Centre’s website! By creating the site we aim to bring together researchers, activists, practitioners or anyone who is really passionate about an issue affecting women. We aim to do this via research, projects, events, blogs or any other way to document women’s lives. We are primarily focused on issues that impact women, but are also keen to work with our allies from other minority identity groups. The WRC is interested in working with people from a variety of backgrounds, so if there is a topic you want to highlight please do get in touch.