Jane Muir
Jane Muir Column
We need new carers for the summer. We have direct payments and we don’t use agencies, so this means doing it all ourselves – advertising, interviewing and training.
We live in a university town. We are lucky therefore because we have a regular stream of lovely young people training to be nurses and teachers and only need carers during the holidays. They need work that fits in with studying and college vacations. That suits us.
Between myself and A we’ve been able to choose brilliant carers, the only downside is that they tend to leave after a year to go into full time work, leaving me writing references and advertising for the next lot.
Paperwork
Whenever I go to visit A at college I am struck by the scene: carers sitting around doing ‘paperwork’. That’s the big difference between carers in an institution and carers at home. They also abide more strictly with health and safety regulations that insist upon carers wearing plastic gloves at all times, as well as student protection policies that prohibit hugs. I can see why these are more important in an institutional setting, but at the same time, that’s what makes institutions, ‘institutional’. Box ticking and paperwork start taking over; common sense and compassion start to take second place.
I sympathise. One of our past carers; sympathetic, responsible and intelligent, also worked in a pub kitchen. He confided that one of his jobs before finishing up in the early hours was to check the fridge temperatures. “No-one really checks them,” he admitted, “we just fill in the correct numbers in the book in case anyone comes to inspect.” That says it all really. That’s what a box ticking mentality can do to you. It is I’m afraid, what’s happening to our society as a whole. We all do it: teachers teach to exams but forget about inspiring students to learn, nurses can be so focussed on filling in charts that they forget the patient. Social workers notoriously spend much of their time filling in forms; benefits agencies read questions off a computer screen and spare no thought for the desperate human beings whose lives don’t fit into the script.
I remember being a teacher myself. I was supposed to be teaching one-to-one literacy but we spent the hour sorting out the contents of the pupil’s bag instead. I had decided it was the best use of the time and something that would most benefit further learning given the state of total disorganisation and chaos that the bag demonstrated. We took out stale crisps, crumbs, melted chocolate, old Christmas cards, scrunched up paper, and sorted out crumpled worksheets. I then ticked the boxes for learning targets: grammar, punctuation and sentence construction. (more…)
Jane Muir May/June column
Regular columnist Jane Muir invites her son Alistair to reflect on his last days at college and moving on.
At college they leave me to it. I have to cope. I have to get the bus every morning and it’s so noisy. I don’t understand why they can’t turn the radio down a bit. It’s so annoying it makes me want to escape to somewhere quiet. I want to go to a quiet waterfall or another place.
At home I can have a lie in. I can have a rest at home, lie on my bed and watch TV or listen to the radio. We go to the pub or go out to walk the dog in the meadow in my Trax.
At college I don’t have a lie down at all; there’s no time. Sitting in my chair makes me feel angry and tired. There is a disco I really love – that means I can go mad on the dance floor. Swimming is good on Wednesdays and there’s karaoke on Friday afternoons but I don’t want to wait and wait and wait all the time for dinner and to get everyone on the bus.
At college I get the bus because I am offsite. There’s a girl I really like, but she’s got a boyfriend. Oh dear. When I go to the Orpheus I hope I find a girlfriend maybe – or not. I can do music and video recording and acting and dancing. (more…)
Jane Muir Mar/Apr Column
As this year’s cold and flu season takes hold it is easy to wake up each morning counting how many hours before you can go back to bed again.
Alistair came home from college for a weekend – within half an hour he had developed a fever and was ill for the whole of the rest of the week. I struggled with working in the day and caring for him evenings and nights, and of course, by the end of the week, both the carer who helped me out and I had also gone under. Two weeks later, we are all still alternately feverish and chesty. I feel guilty because A’s carer came into our house to work even when friends refused to cross the threshold – and she loses wages through not being able to do her other jobs, none of which pay her if she is ill. And now although neither of us has recovered, Alistair comes back for the holiday still hanging on to what my mother likes to reassuringly call ‘a nasty cough’.
Having a virus that won’t go makes you grumpy and over emotional even when you aren’t looking after someone else as well. Trying my best not to take time off work having already taken a couple of days off the week before, the smallest of tasks reduce me to hot tears of frustration. I have to fish Alistair’s application for an ‘Adult Learning Grant’ out of the recycling bin where I had thrown it in despair, and when for the second time in a week someone calls round to ‘inspect the hoists’– apparently one visit was the council and the other insurance – I tell him in no uncertain terms what to do with his health and safety check. Alistiar’s word predictor has decided that the word he will always need first and foremost is ‘th’bist’. I have been told this may be a virus too. Or perhaps a secret message from the beyond? (more…)
STOPPING CARING
Jane Muir shares her ongoing experiences of life with – and without – her disabled son.
Labels limit the way society sees and treats you. I feel that I’m betraying my son every time I let professionals tick ‘mild or moderate learning disability,’ just because he has moments in which he exhibits a learning disability of some kind. But there are other times when the label of ‘learning disability’ is as relevant to my son as describing virtuoso percussionist Dame Evelyn Glennie as ‘deaf’ or Paralympian Ade Adeptitan as just ‘a wheelchair user’. Yes, they are those things, but they’re also so much more.
Narrow, prescribed judgements cloud our appreciation of others, and box-ticking reduces us to a list of ‘one to five’ on a narrow scale at a time when we’re supposed to be celebrating diversity.
Like other parents with disabled children, I have had to deal with countless assessment forms for medical, educational and care needs. Despite my best efforts, the process has sometimes adversely affected my own personal relationship with him.
This week, Alistair’s social worker in the physical disabilities team wanted me to clarify the extent of his learning disability in order to apply for a grant. I had ticked ‘C’ – ‘Can communicate but with difficulty due to physical limitations’ – but she wanted me to tick ‘D’ – ‘Can only communicate basic nutritional and toileting needs’. (more…)
Stopping Caring
Jane Muir shares her ongoing experiences of life with – and without – her disabled son.
Labels limit the way society sees and treats you. I feel that I’m betraying my son every time I let professionals tick ‘mild or moderate learning disability,’ just because he has moments in which he exhibits a learning disability of some kind. But there are other times when the label of ‘learning disability’ is as relevant to my son as describing virtuoso percussionist Dame Evelyn Glennie as ‘deaf’ or Paralympian Ade Adeptitan as just ‘a wheelchair user’. Yes, they are those things, but they’re also so much more.
Narrow, prescribed judgements cloud our appreciation of others, and box-ticking reduces us to a list of ‘one to five’ on a narrow scale at a time when we’re supposed to be celebrating diversity.
Like other parents with disabled children, I have had to deal with countless assessment forms for medical, educational and care needs. Despite my best efforts, the process has sometimes adversely affected my own personal relationship with him. (more…)
Stopping Caring
In her regular column for Able, Jane Muir shares her ongoing experiences of life with – and without – her disabled son.
Alistair has been back from college for the summer and, reverting to my role as mother/carer, one of the things I have to get used to all over again is being out and about with him and losing the treasured ‘anonymity’ I usually feel. In his wheelchair, Alistair is a target to all kinds of odd reactions from strangers.
On the first week I took him swimming. On the way home, I left him in the back of the van, parked in a disabled parking space, listening to the radio while I popped into the supermarket to get a few things we needed for lunch. Climbing back in again, I was aware that a lady with a walking frame was staring – glaring – very hard at me over her shoulder as she made her way up the street. The car window was open and, full of the joys of summer, I gave her a smile as we pulled out. She scowled back, spitting out the words she’d been longing to say: “You’re not even disabled!” (more…)
