Many disabled people face difficulties adapting their routines to stay safe during the coronavirus pandemic. Thalidomide Society chairman Geoff Adams-Spink reveals some thalidomide survivors have been left perplexed after realising how often they use their mouths and feet for tasks, instead of their hands.
It was a friend and fellow thalidomide survivor, Berrisford, who first alerted me and other members of our community to the added dangers posed by coronavirus.
Thalidomide was a morning sickness drug given to pregnant women in the late 1950s and early 60s, but it typically caused shortening of limbs for the babies born. For both Berrisford and me, it affected our arms.
In a Facebook post for friends, Berrisford described the great lengths he had gone to in order to remain safe while out on a shopping trip just after Covid-19 hit Europe and the US.
He explained that he meticulously swabbed his supermarket trolley and maintained social distancing at all times.
He took his goodies home in the knowledge he had kept himself safe having followed the government’s guidelines. A good job well done.
At home, hungry and tempted by the food in front of him, he grabbed something that looked tasty and tore into the packet in a way he has done for most of his life – with his teeth.
Despites all of those elaborate precautions he had momentarily forgotten he often relies on his mouth instead of his hands for such tasks.
His hygiene routine had effectively been thwarted by a rumbling stomach and a workaround that many of us with shorter arms have used several times each day for decades.
So how do you deal with coronavirus when you use your mouth for simple tasks, instead of your hands?
It surely doesn’t need to be pointed out that the hand-washing principles aren’t as effective for my friend or me in this situation as for many others.
But putting something in your mouth that has come from a public place could potentially transfer the virus straight to your body – it would be a very direct transmission.
Many Thalidomide survivors use the same mouth-trick as Berrisford for the sake of simplicity and speed. My dentist constantly reminds me that opening bottles with my teeth (the screw top kind, don’t worry) will result in lasting damage. Correction, has already resulted in some lasting damage.
But at the moment, life with coronavirus means taking care to wash all my shopping once I return home, before I open a packet and devour the contents. Or I can ask someone within my household to help me, providing they have washed their hands first.
It’s not just our mouths that can cause dilemmas. A lot has already been written about the difficulty some disabled people face in trying to maintain the 2m (6ft) distance from care givers – if somebody is washing my hair in the shower, they are in the danger zone, as am I.
Thalidomide survivors are all around the same age – heading into our 60s – but we now face a whole new set of challenges to untangle related to this pandemic. We’ll have to wait for a vaccine before we can go back to using some of our old tricks and workarounds again. In my friend’s characteristically poignant words: “We have to rewrite the ‘how to’ book (again)”.
This got me thinking – could there be an upside, as well as a downside, to living with upper limb impairment?
Although we do use our mouths and our chins a lot, perhaps to guide a pen or maybe to open a packet of crisps, many of us are extremely adept at using our feet to do things at waist level or below.
For example, I will automatically open and close doors or flush the toilet using my feet, which don’t go anywhere near my face or mouth. And at the end of the day, those socks go into the wash.
When I saw videos of people fighting over toilet rolls, forgive me, but I felt a little bit smug.
In common with many other thalidomide survivors who have short arms, I have used a bidet or shower toilet since childhood – I even have a portable one for use while travelling.
We are therefore among the very few people who have not had to stress about toilet paper being in short supply.
It’s all too easy to think yourself into a passive, victim mentality when it comes to coronavirus but disabled people are ingenious problem solvers – life hacks are what we do all the time to get by.
Living through this extraordinary episode will call for vast reserves of lateral thinking, creativity and ingenuity. As disabled people, we already have those things in spades.