Over the survey period, we received one hundred and sixty-one individual responses to our survey.
Has covid affected your support?
The first question that we asked was if the respondents felt that their support had been impacted by the COVID-19 pandemic. When thinking about this question, we asked them to think about people or organisations that may have supported them in the past but were not able to because of local restrictions that they were under. This could have been a family member, a carer, support worker or a local charity that used to offer activity services. 98 of the 161 respondents said that they had been affected.
Are the restriction rules clear to you?
The second question was if the restriction rules were clear to them. When looking through the comments that were entered alongside their answer, a recurring theme was that the disabled people understood most of the rules – it was non-disabled people that were denying “reasonable adjustments” when it came to exemptions and access to public places. Non-disabled people were also purchasing and using “exemption” lanyards from the internet and falsely claiming they had a medical exemption; the hidden disabilities lanyard had become appropriated during the pandemic and falsely used as a symbol of mask exemption. This meant that disabled people that had hidden disabilities and were historically using these lanyards to show that the wearer may have needed support in a public space were being incorrectly challenged. There was also a rise in counterfeit Sunflower Lanyards on various websites, and The One Show (BBC One) covered this in January 2021.
Who tells you about changes to the restriction rules?
For the third question, we wanted to know where disabled people typically found out about changes to these rules. This question was a multiple choice one – they could choose more than one option if they wanted to. The most-used and most-trusted source was Radio and Television, where 101 of the 161 respondents were using it as their trusted source. Some of the comments that were entered along-side these choices were, however, that they had become fixated on these statistics briefings; which was then having a negative impact on their mental health and anxiety levels – whilst they were also quickly becoming overwhelmed with the amount of information that they were receiving on a daily basis. They suffered with information overload.
There was an entire section of disabled people that were being excluded during these daily briefings – Deaf BSL users. Not only did the government spend two point six million pounds on refurbishing their briefing room into a White House-style briefing room, they also did not allocate space on their Coronavirus briefings for a BSL interpreter. Scotland, Wales and Northern Ireland were including Sign Language interpreters on their briefings, and yet our own government refused to do so.
Ultimately, they were rightly challenged. Over a hundred and fifty thousand Deaf BSL users were not receiving information on changes to the law, health information, or on how to keep themselves safe in their first language (British Sign Language) during the pandemic. This led to a movement on social media called #WhereIsTheInterpreter, led by Lynn Stewart-Taylor – which has now ended with a Judicial Review. One of the positives coming from the COVID pandemic is this Judicial Review – if it were not for the government’s public failings on an epic scale regarding the lack of access, this campaign may not have gone as far as it would have done pre-pandemic.
Another concern that was highlighted within the responses to this question were in relation to social media; how fake news was able to spread like wildfire on the platforms. It became so big a problem that the major platforms like Facebook and Twitter had to come up with new ways to try and stop the spread of misinformation and scaremongering. It only got worse, however, when the vaccine rollouts began. Anti-vaxxers were using these platforms to spread complete fabrications and conspiracy theories about the vaccines, and Parliament released information on this topic.
For the respondents that chose ‘other’, responses were mostly care staff or agencies. Their support providers had been filling in the information gaps.
Has going out and about changed for you?
95% of respondents said that going out and about had changed for them in some way; whether that be what things were like for them when they were out, or if they actually were able to get out at all.
A recurring issue that disabled people were having was the lack of support to even manage to get out of the house. Some care agencies abandoned their clients, leaving them alone for months on end; and some had to do things for the client. By doing things for the client, it meant that their independence was being eroded away. The British Medical Journal released an article in September 2020 titled: “Care during covid-19 must be humane and person centred”. Whilst on the topic of care, allow me to draw your attention to this article that the CQC published a report on DNACPR (do not attempt cardiopulmonary resuscitation), and how the health system had failed to communicate with patients that they had put this on their health records – resulting in deaths that could have been prevented.
It wasn’t all doom and gloom when it comes to the responses we received to this question – some care agencies had come up with alternative ways to do things for their users; although the individual was still losing some of their independence.
For the disabled people that were unable to leave their homes at all during the pandemic, they had to rely on supermarket delivery slots. The visually impaired and blind community were hit really hard by this as they were not automatically added to the priority list, meaning they were often unable to get delivery slots. It hit them even harder when they were forced to actually go to the stores – shelves were often short of groceries, and deals that would normally be available to them were sold out. There were reports that other sighted shoppers regularly failed to socially distance, meaning that there were times when there could potentially be a confrontation between them when they reach over the top of them or bump into one another.
RNIB launched a campaign titled “Coming out of lockdown, together”, campaigning for everyone to maintain the space, be patient and be helpful. They also supported the Government’s campaign “Championing equal access on public transport” saying that:
“it’s everyone’s journey” brings together those who want to improve public transport for disabled people and deliver real change. It has been developed by the Department for Transport in partnership with industry, disability groups and disabled people.Source: HM Government, 2021
Something else that had happened with the major supermarkets was that they had taken over disabled parking bays close to the store entrances for things like click and collect, or queuing to get inside. This meant that often the disabled people themselves were unable to actually enter the shops.
The lockdown restrictions made it extremely difficult for disabled people to travel; an anxiety had set in over the risk of virus transmission as well as mask shaming. In the U.K., mask shaming is where people are harassed because of their inability to wear a face mask due to a medical exemption. Some shops had begun banning people from entering if they were not wearing a mask; they were being discriminated against based on their disability. We had hundreds of disabled people contact us from up and down the country – whether it be because refusal of access or where disabled people were unable to work because their place of work was forcing all their workers to wear masks.
For some people, being unable to travel adversely affected their mental health. Being unable to attend the funerals of close friends or family, meant that there has been no closure for them. The restriction rules also mean that there was a limit to the number of people able to attend the venues (if at all).
What has been bad and good this past year?
For a lot of the respondents, a recurring theme was one of isolation. Some hadn’t seen friends or family in over a year, so for those that need support from them then it has been virtually invisible; it has been a lonely time for them. A survey on the general population by Ipsos Mori in 2020 says that:
“Overall, the paper warns that the COVID-19 pandemic could have a ‘profound’ and ‘pervasive impact’ on global mental health now and in the future and calls for research on mental health and brain science to be central to the global response to the pandemic”Source: Ipsos Mori, 2020
Another by-product of the social isolation has been the risk of an increase in domestic violence and aggression. We saw some responses from disabled people that told us that they had seen more anger from family / partners directed towards them. Refuge recorded an average of over 13,000 calls and messages between April 2020 and February of 2021 to its National Domestic Abuse helpline. The UK government hopes to have their new Domestic Abuse Act come into force at some point in 2021/2022.
On a more positive note, the pandemic has allowed people to spend quality time with their family. It has also allowed disabled people to do things around their home that they had been putting off, as well as learn new skills.
For some, the shift to digital-first has been easy. The country shifted everything online, meaning that for some their work had become more accessible to them. For years, disabled people have been campaigning for flexible working arrangements – employers have been reluctant to allow homeworking. The pandemic hit and employers were suddenly able to implement ways for people to work from home – it was all suddenly possible. It was the same for education, where disabled students had previously been asking for the ability to study remotely if they needed.
It has also allowed disabled people to do things around their home that they had been putting off, as well as learn new skills.
For others, however, the shift to digital-first has been extremely difficult. Age or a lack of access to technology means that some have had no contact with anyone outside of their four walls. A lack of hardware or lack of fast internet access has meant that they have been left out. One of the considerations we had to make when undertaking this project was how we would engage with these disabled people – and by setting up the telephone and SMS options, we were able to have them take part.