AMPLIFYING CARERS' VOICES
Creating a space for carers to share their voice.
Maya James
Maya writes for us in February 2021 about caring in the pandemic.
Get yourself a cuppa, a few moments and take a read.
Caring in a time of pandemic when no one cares

Having become an involuntary carer some ten years ago when our middle child was born and shortly after was diagnosed with Down’s syndrome, I note a distinct change in attitudes and a whole new set of challenges to concur in this ‘exceptional’ circumstances caused by the pandemic.

Strangely, “carer” was my first job in this country. I arrived in 1999 as a fresh-faced volunteer on a pilot student project ran by one of the largest disability providers in the UK. It was a complete fluke since my application form was very non-specific: - questions such as “where would you like to be placed” followed by a list of 26 countries, I had placed a tick at “anywhere”. Questions such as “for how long”, I had responded to with “I can be flexible”. And this is how I was placed on a full-time basis in Edinburgh, about which we Bulgarians knew little. Most of this scarce knowledge was sourced from two 90s classics: Brave Heart and Trainspotting. Thankfully, my mother had only seen the former and this is how my move to Scotland came to be.

The residential unit where I was placed had 7 adults in semi-independent living accommodation. My job specification was to assist the residents in their daily tasks but in practice I was mostly assisting staff in tasks they disliked or would not do for residents. Either way, I was 21 and had fun and learned a lot. One major lesson I learned is that people are people, and it is not abilities or disabilities that unites or divides us but whether we view people as our equals. Wayside learning involved mastering the Scots dialect and keeping my physical, social and cultural self-nourished on £20 per week, both not a mean feat.

Fast-forward two decades and here I was again, labelled a ‘carer’. Only, to my own children one of who has learning a widely recognised disability and some physical restrictions. I also care for my parents but that’s for another time. And then Covid struck and first lock-down happened. Our whole worlds changed but we understood we had to stay in to stay safe. Talk about the pandemic was overwhelming, it was practically poured out of every media source. My 4 year old grasped the concept of the fear from the dangerous virus that’s outside much faster than my ten year old son. But then, it was understandable. This was completely new to everyone and I suspect much more difficult to make sense of when your brain processes information differently and there is no tangible object.

Coming to terms with this was frustrating for him and the physical manifestation of his frustration was anger. My boy was getting mad at me. What did I mean he could not go to the cinema (read swimming, deep sea world, grandparents’ house, the Dynamic earth, the playground in the park). These were exactly his words: “What do you mean?” and “What are you saying?” He started going out with a plastic sword, so that he could ‘kill the virus’. We tried to explain, used visuals, videos and then by another wonderful stroke of luck we decided to get Disney plus and Ralph Breaks the Internet did a better job than all the governments speeches and videos and guidance put together. It sunk in! It is destroying the world and there is nothing any of us could do to stop it.
“What do you mean?” and “What are you saying?” He started going out with a plastic sword, so that he could ‘kill the virus’. We tried to explain, used visuals, videos and then by another wonderful stroke of luck we decided to get Disney plus and Ralph Breaks the Internet did a better job than all the governments speeches and videos and guidance put together.

@MayVJay
People became protectionist, closed in, suspicious and angry. We no longer saw their smiles when we walked about singing. We saw accusatory eyes and horizontal nods. We got shouted at when my son was refusing to walk (there is only so much walking without a purpose you can make a boy with DS do): “Yous cannae be stopping and sitting doon! It’s tha rules!” random lonely walker shouted at us from the promenade. My blood hit boiling point. What did she know? Little did she care. Could she do any better trying to keep these children happy, healthy and active. But I did not retaliate, I am very British that way; just smiled and waved.
Our friendly neighbour felt it was her duty to warn me off from going to the beach as we’d cause ‘the second wave’. “Yes”, I said, “it’s all on us”. We don’t even have a secluded garden, simply a small communal open space. It is easy to preach when you are old and living on your own but try sharing a small living space with three high-energy youths and a husband who’s constantly working. I turned my back and muted my ears; as a mother I am proficient at both.

When we accidentally managed to break into a playground, the boys were persistent and the flimsy cable ties gave in, passers-by stop to take videos. Next thing we knew the police were there and although we were not physically removed it was a stressful experience.

I became resentful of the Thursday clap-for-carers, for we weren’t included. Our children and we, their carers, remained invisible, we remained ‘them’ who are different. ‘Them’, the ones who were not wearing a mask (my son lip reads, so I am not wearing a mask outdoors and many people with disabilities and hidden conditions simply could not), who kept on singing or sitting, who cried as we clapped for we knew not one of ‘them’ was clapping for us, who kept the petitions going for opening the schools at least for children with additional support needs, for whilst routines are important for every child for children like ours, routines are paramount. My middle son’s stammer was barely noticeable, but lockdown made it pronounced. Little brother readily adopted this novelty speech pattern. Inability to access familiar activities resulted in weight gain particularly for already classed obese son.

Our role to parent the siblings was pushed to the side as we were on full time duty trying to shield from the negative impact the whole societal paranoia had on their well-being, busy building a new safe world for them to exist in without too many familiar faces or places. And we carry on being shouted at, pushed and shoved because it is tough, and he is so fed up.
“Of course, we will go swimming again, I do not know when, but we will, I am not sure if it will be soon, some day, I promise”.

And in this chaos, where it’s no longer clear whose child’s needs are greatest, we carry on caring and campaigning and parenting and working. And we are beyond exhausted, and there is no end to it.
But hey-ho; the First Minister did not even mention them (us), so who cares?!
C’mon, anyone, time to point a finger now!?


And in this chaos, where it’s no longer clear whose child’s needs are greatest, we carry on caring and campaigning and parenting and working. And we are beyond exhausted, and there is no end to it.
Maya James
@MayVJay

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