"It's life, Jim, but not as we know it"... the Star Trek (mis)quote sums up 2020 for most people. Even if your family has escaped a serious coronavirus infection or, much worse, a bereavement, everyone's life has been negatively impacted to some extent.
Now, along with the early nightfall, lockdown-fatigue has set in and the country is nervously eyeing up the festive holiday trying to figure out the size of turkey that’ll be needed.
We are stressfully preparing to move house, and are hoping to spend a last Christmas with my terminally-ill father in Wales. But will we be able to? Will I ever see him again? It's difficult, but it is nothing compared to what so many have been through this year.
But these are the big things. As far as daily pandemic life goes, I've got off quite lightly. I work at home anyway and although I have lost my disability home support, they have been replaced by my ever-helpful husband, who's been wfh since March and will do so well into next year. Less going out has meant I've become less mobile however, while disrupted sleep results in increased pain spikes from my Ehlers Danlos. I also find wearing a mask can exacerbate my PoTS symptoms, but some are better than others.
Disabled people are always hit hardest
For disabled people in general, the pandemic has made the challenges of daily life far harder. They are more affected by social isolation and depression with the continued closure of organised activities, respite and day centres. Government guidance encourages local authorities to prioritise short breaks, but saying it and doing it have turned out to be very different things. Even if LAs have read the most recent guidance, it's very hard to keep up with what specifically has been changed in the latest update, because it isn't made clear enough in the documentation. New information should be highlighted, deleted information should be noted.
Families caring for a disabled child or young person are entitled to short breaks services (also known as respite). We recognise the challenges for local authorities and providers in providing short breaks throughout the coronavirus (COVID-19) pandemic, as well as the significant impact of reduced provision on families and on children and young people themselves.
Guidance: Coronavirus (COVID-19): guidance for children's social care services
We are encouraging local authorities to prioritise support for disabled children, and to consider flexible and pragmatic options to deliver that support; for example, some local authorities have made more use of direct payments beyond their usual criteria. Direct payments may be used to enable families to purchase respite care and equipment to use at home, for the child or young person and/or their siblings. Direct payments could also be used to support families with a disabled child whose usual services have been suspended or reduced.
Local authorities and respite providers will need to work together to risk assess and adapt short break services which have been suspended or reduced so that they can resume vital provision for disabled children/young people and families.
The UK’s human rights watchdog, EHRC, has also warned that the government must prioritise children’s rights and do more to protect them from the devastating impact of the pandemic,
If you have sensory impairments, it's even tougher in the pandemic
For those who live with sensory disabilities such as hearing or vision loss, the pandemic has brought other daily challenges. Face coverings cut off a vital, visual method of communication for the UK's 12 million deaf adults and 50,000 deaf children. Even if a deaf person uses signing, as well as lip reading, reading facial expression is a crucial part of conveying meaning.
It's something you probably don't think about much, unless you are deaf or have a relative with hearing impairment. A survey from the National Deaf Children's Society found just 23% of the public know how to communicate with deaf people while wearing a face mask. Even if you can hear, 89% of people in the NDCS survey said they struggled to understand muffled speech.
If you have an invisible disability and you would feel more comfortable with some visual kind of proof, you can download a free one for autistic people from the NAS site, or a general one from the government website here. You can get a variety of sunflower lanyards here. You can get them on Amazon too, but they are a lot more expensive.
The government has exemptions for those who cannot wear a mask because of their disability. But many, including autistic young people, have been met with abuse or refused entry to shops, even when showing an exemption card or a sunflower lanyard. Neither is required by law. Abuse is never acceptable; we should come from the starting point of compassion. If someone is not wearing a mask in an enclosed space, we should first assume there is a medical reason. Unless they’re in a classroom of course, because if a stray coronavirus wanders into school, the government has decreed that it stops at the class door.
No easy answers, but consideration is vital
The NDCS says its survey results were very concerning because while public health must take priority, deaf people are left facing an even higher risk of isolation and loneliness.
“Face masks and coverings have made lip reading impossible and if people don’t know how else to talk to us, even everyday events like going to work or school, visiting shops and taking public transport can be quite intimidating.
However, what the public lack in knowledge they are making up for in enthusiasm and we must capitalise on this. My message to deaf people of all ages is to let someone know when you’re struggling to understand them because there’s a clear and widespread willingness to help you. The government, businesses and the general public also need to play their part by taking our tips on board and helping us reach as many people as possible. A little deaf awareness will go a long way towards tackling the months of isolation and loneliness many deaf people are now facing.”
Susan Daniels OBE, Chief Executive of the National Deaf Children’s Society said:
Our own columnist, Matt Keer, is the father of two profoundly deaf young men. Matt says,
"The pandemic has affected my two deaf boys in lots of ways - but communication has definitely become more difficult for them since masks have become standard. It's not prevented them from doing anything, but it's made day-to-day living harder outside the home.
Matt Keer, parent of two deaf sons
"There's no right answer here - my sons respect the importance of masks in reducing transmission, they understand how important masks are to many people, and they don't expect people to stop wearing them. But a bit of extra consideration for deaf young people goes a long way.
"The NDCS's five tips are easy to understand, and they don't take much effort to use. If you use a clear mask, thank you! - but remember that they're not a silver bullet. Clear masks can muffle sound more than cloth masks, so speak a little bit louder if you can."
You can read the top tips Matt referred to at the end of the article. The issue with clear masks steaming up can be helped by wiping washing up liquid on them and polishing it off, I've read. On Amazon, many come with poor reviews, but this one seems to do quite well.
Isolation and anxiety too, for visually-impaired young people
For children and young people who are blind or have a vision impairment, the pandemic has led to other issues. Young members of The Thomas Pocklington Trust, a charity for people with vision impairment, say lockdown has increased levels of isolation and anxiety that they already faced.
Home schooling has also proved challenging with materials not being sent in accessible formats, or students not being permitted to take their equipment home with them. There have also been difficulties with content not being audio-described, increasing levels of anxiety for children and young people as well as their parents supporting them.
"I have stopped going out because of Covid, I used to meet up with my friends, I can’t anymore…..I just want to Covid to go away so I can get back to normal’
17-year-old with visual impairment
‘I would rely on my parents to take me out, going clothes shopping was fun, I just don’t go anywhere now because of Covid’
19-year-old with visual impairment
‘Since Covid-19 regulations the public have become less understanding & more intolerant of people with visual impairments. Life was always difficult…now it is impossible… you are shouted at for picking an item up to look at it as you really can't see it on a shelf.’
Parent talking about their visually impaired child's experiences.
Emma Cruikshank, Head of Children, Young People and Families says:
Lockdown has proved difficult for young people who have wanted to continue to go out, due to the challenges of needing to socially distance, and we have been told that when they haven’t been able to distance themselves from others they have been shouted at, because the wider population don’t understand the challenges vision impaired people face.
Emma Cruikshank, Head of Children, Young People and Families, Thomas Pocklington Trust
Vision impaired young people have not had the full range of access to habilitation services or support due to the necessity to socially distance, professionals being furloughed and for those children and families with additional health needs who have had to shield. Habilitation is a vital means of training and support for developing and improving confidence in mobility and daily living etc.
The best and the worst of us - let's choose wellbeing
The pandemic has brought out the best and the worst in humanity - just watching or reading the news on any given day will tell you that. But the survey finding that people are willing to change their behaviour to help deaf people is heartening. If you want to actively promote wellbeing, there are a number of things you can do to help.
In general, I would highly recommend reading the Eight Laws of Change by visionary scientist Stephan A. Schwartz. It’s not a hard read at all. Get a taster from his Ted talk here. It will certainly make you think about how making decisions based on wellbeing can change your life for the better. It's about each one of us making quotidian - everyday - life-affirming choices that ultimately benefit everyone else too. (Stephan is a fascinating person and a leading figure in subjects such as non-local consciousness and extraordinary human functioning.)
Indeed, the NDCS survey of 84% of people say they would change their behaviour to help a deaf person. But how? Under government face-covering guidelines, you are permitted to lower your mask on public transport to speak to a deaf person. The charity is calling on people everywhere to “play their part” in helping include deaf people feel included in conversations and social interactions, which it says everyone will benefit from.
“A little deaf awareness will go a long way towards tackling the months of isolation and loneliness many deaf people are now facing,”
NDCS
Five top tips for communicating with deaf people in the pandemic
The NDCS has developed five top tips for communicating with deaf people,
- Keep it clear. If you wear a mask, make one with a clear panel if you can, so your mouth is visible.
- Write it down. If speech isn’t working, write it down or use a text message.
- Find a quiet place. This will make it easier to hear, especially if technology is used to support hearing.
- Be patient. Be flexible, creative and most of all patient in how you communicate with deaf people.
- Use an app. There are mobile apps that can translate speech into text – why not try one?
Also read:
- Savage cuts to support staff leave deaf children in England fighting for their futures
- Overcoming barriers to help my deaf children succeed
- The Deafblind world: The ‘Shoeness’ of a Shoe
- Distance education resources for children and young people with SEND
- Why I’m using my new global United Nations role to promote neurodiversity and the importance of equality
- UK Disability History Month – How far have we still got to go?
- Improving SEND provision: Co-produced resources for the whole school
- Dear Prime Minister, not all education in lockdown is equal
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Tania is an experienced broadcast and print journalist & author. She also runs a PR, web & social media consultancy, SocialOro Media.
Tania is a rare disease & chronic pain patient advocate with Ehlers Danlos syndrome.
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