What exactly does good care look like? Would you know if you saw it?
Long before making comics about care, I worked in learning disability support services. In that time I worked alongside a number of people, most of whom were genuinely caring and driven to make people’s lives that little bit better. The main purpose of this project is to shine a small light upon the realities of care work, and the things that care givers have to deal with. One of the most difficult challenges facing a care or support worker comes from the public, and their assumptions about what real care actually looks like. Often, it looks like the exact opposite of what it appears to be…
R is a support worker in Cardiff. For many years he has worked with N, a gentleman on the autism spectrum. Whenever they go out, N likes to walk a few paces behind, that way it looks like he’s unsupported. He cannot communicate verbally to explain this, so over the years he would get frustrated being alongside other people. He just doesn’t want to appear as though he needs looking after. Who does? In the twelve years I worked in learning disability support, he was also one of the most complex individuals in the service. He was very particular about who supported him and had no qualms about expressing his displeasure if he didn’t like you. He was exercising his right to choose, and was pretty discerning when he did.
Most days you’ll find R and N out and about near his home. They’ll do the same things we all do – go shopping, have lunch, watch the world go by. A few days ago, while waiting at a crossing a couple on the opposite side of the road began talking about the two men as they went out for the day.
“I see them quite often. I don’t like the way the carer walks ahead and leaves him behind.”
Rather than just suck up the backhanded insult, R chose to address this comment. “He chooses to walk behind me. If you want to know why, I can tell you.”
The couple, likely a little shocked that they’d been heard, looked away awkwardly and went on their way. Despite being politely offered an explanation and an insight into N’s preferred way of support, they just walked off feeling a little scolded.
Twenty minutes later N and R wait in the queue at Tesco’s and the couple from the crossing approach them. The woman gets suddenly irate and points at R yelling, “I know all about autism and the way you treat him is disgusting!”
R is working and there’s only so much he can say, so he offers again, this time with some more specific information.
“He has a care plan which I follow and if you want to know more please just ask.”
Her reply comes swift and resolute, “You are a horrible person and the way you are with him is disgusting!”
Feeling that this was never going to become a constructive dialogue, R asserted that he’d worked with N for 28 years and he’d never complained.
“Well he wouldn’t would he!”
And off she stormed muttering obscenities at R under her breath.
Perceptions can have a huge impact on people’s reputations in their community, and can even affect their jobs. I would never suggest that a concern goes unreported, but too often the care giver as ignorant, would-be abuser becomes the de-facto stereotype. That woman wouldn’t know that R had helped re-settle N from the horrors of institutional life in Ely Hospital to a home of his own. She wouldn’t know that he had worked with N to make him a valued and recognised member of his community. She wouldn’t know that he’d helped N go from being a man who hated being around other people, to a season ticket holder at Cardiff City who loved nothing more than the noise and banter of the match day crowd. She certainly wouldn’t know that as cuts to funding and a constant staffing merry go-round left N’s support in tatters, he’d consistently worked fifty hour weeks over many months and years just to make sure he saw a familiar face each day. Putting his own life aside so N had something approaching consistency, in a life that too often had known anything but.
Good support doesn’t always look how we think it should. It isn’t heads cocked to one side with doe eyed smiles and choruses of ‘Aw, bless.’ It’s doing the right thing by the person you care for, and often that means appearing to be the very opposite of what you are. To give R the last word…
“Please don’t judge people by what you see. And if you see something you don’t understand or agree with just ask and we will gladly explain. We don’t expect thanks from people but we don’t deserve abuse either.”
JCAugust 25, 2018