My favourite lockdown story is that of a young man in his 20s. He was living in a shared home with 24-hour support, and his two flatmates went to stay with their families for the duration. His family invited him to stay with them but he declined.
When asked if he’d get lonely, he reported that he’d enjoy the peace. When told he may not always be able to get support with housework, he reported that he wouldn’t make much mess on his own anyway. When told he may not get support to cook, he said: “Can you send me some microwave meals and some bread rolls?” They agreed on pre-cooked meal deliveries and a weekly supermarket delivery for essentials. With regular wellbeing calls, it’s worked, bar a slightly grubby bathroom (which doesn’t bother him at all).
He hasn’t broken lockdown rules once – in fact he seems to like them. He is due to move into his own flat with a weekly three-hour support package for general house admin, support to attend appointments when required and to complete an online shop. It’s a shame that it took a pandemic for us all to realise his potential but here’s hoping he’ll be a trailblazer.
A taste of my own medicine
During lockdown, I’ve had the painful job of persuading my own relatives to move out of their home into a supported environment. They’ve been slightly reluctant but have, through small-steps discussion, admitted that it’s necessary for their own wellbeing.
It’s made me really think about how much anguish families of people with a learning disability can face relentlessly. This is the first time I’ve sat on this side of the table, arguing about money, weighing up the risks and dealing with overworked social workers and housing officers, all of whom have too many cases and not enough housing options for their clients.
Worst of all, I’ve been trying to get power of attorney during lockdown with social distancing, and they are hard of hearing. It’s certainly been a wake-up call and has led to some serious reflection on my approach to working with families. I’ll now sigh less when the emails from a so-called “difficult family” pop into my inbox – and I’ll always take the call.
Playing catch-up
One small silver lining about the whole lockdown business is that some of our less tech-minded service providers are finally catching up with the rest of the world when it comes to using IT.
I had a rather painful conversation with one home manager who was explaining how great tablets are: “It means families can talk to each other face to face whenever they like without having to travel.” I nodded and politely declined his request for the local authority to foot the bill to give each resident one of their own.
He seemed rather surprised when I explained that many people with a learning disability have been owning and using their phones and tablets for years to communicate with their family and friends and that they, like anyone else, bought them with their own money, through saving up, or were given one for their birthday or Christmas.
“Seems a bit harsh,” said my institutionalised home manager. I didn’t think that was the time to suggest using Alexa.
Shortly afterwards, I saw a family friend was Facebook streaming live on her own computer from her front room in a similar shared service, showing off the meal she had just cooked. She regularly uploads news on her successes, videos of her dance routines and embarrassing pictures of her friends at parties.
The expectations of people around her have been far higher than those around people with comparable needs who live in more institutionalised settings.
Funny face
My musing regarding the potential catch-up for people using IT in the disability world led me to think about the different status of nonverbal communication in online calls.
A friendly colleague sent me an offline message during a meeting the other day to “watch my face” as I was, apparently, raising my eyebrows frequently and, at times, pulling a confused or horrified face. I forget that if I can see you on the screen, you can see me too. I also assume no one’s watching me if I’m not speaking. That’s the thing with video calls – you can’t pick up vibes.
That made me think about how using IT to communicate with many of the people we support would put us on a more equal footing. No need to worry about personal space or eye contact, difficulties in reading body language or facial expressions – a simple backwards and forwards transaction.
I’m looking forward to the outcome of enforced Zoom/Teams reviews with people and their families. Surely, if someone can log into a call to speak to their mum, they could join in an online review. They won’t have to sit still or stay in one room and could engage as little or as much as they want. Watch this space.
