In Mind - a written monument to all people with intellectual disability. (Items 31 to 40)
50 pieces of poetry and short prose by Peter Limbrick
This is collection of short pieces about people of all ages who have learning disabilities and about the conditions they experience in any country. The collection spans the period from the1970s, coinciding with the gradual closure of some of the big 'mental handicap hospitals' in the UK.
The poetry and prose pieces, written in a variety of voices, are offered as a monument to adults and children who have lived and died or are living now in inhuman situations. The first piece, ‘Letter’, is from an imaginary hospital manager to a national newspaper. It sets the context for this In Mind collection.
Some poems mention One-to-One and the One-to-One book. This was a 1970’s project in the USA and then UK to raise awareness of adults and children condemned to institutions.
Some of Peter's other poems are published in recent issues of Scintilla, the journal of literary criticism, prose and new poetry in the metaphysical tradition.
Please contact Peter if you would like to use one or more of these pieces in some way.
E-mail: This email address is being protected from spambots. You need JavaScript enabled to view it.
31. Jamie’s Family
Bridget is sitting with a cup of tea and a cigarette at
the kitchen table.
It is three in the morning, she is wide awake – again.
She always lies in bed wondering whether to get up
or lie in the dark worrying.
Getting up might mean disturbing Patrick or waking
Jamie in the next room.
Jamie is two years old and hardly ever sleeps through,
so waking him is to be avoided.
Tonight, she had dozed off and then woke in a panic
remembering the TV news of young disabled people
being badly treated in a care home.
This is her biggest worry: about what will happen to
Jamie when she dies.
Her own health is an issue now. She is always
stressed and she is sure that is causing her weight
gain.
The doctor said she is not quite obese yet and
prescribed antidepressants. Antidepressants!
She knows full well she needs some practical help
with Jamie more than pills.
She knows Patrick is not happy. When they were
told Jamie had a genetic problem, his mother said,
‘It didn’t come from our side of the family!’
Bridget has been wondering ever since if Patrick
blames her for Jamie’s disability.
He lost his last job because of Jamie.
In the early days, management gave him time off to
go to appointments but then had to sack him.
In his new job he works all hours and really needs a
good night’s sleep.
Bridget feels Patrick is torn between loving Jamie and
wanting his career back on track.
The doctor had asked her about her social life.
Social life? That was before Jamie came along!
Kiera is lonely too.
Her friends don’t come round anymore and there’s
no money for after-school activities. Kiera doesn’t
complain though, she dotes on her little brother.
That is the positive side. Jamie is so loveable and
Bridget can’t imagine being without him.
Being without him – more fuel for the small hours.
32. Back to Front
I had already met the family. This was my
first visit to work with their baby at home.
Both parents said they had been slow learners
at school.
Word had spread.
I found the room full of relatives, friends and
neighbours leaving only a small space for me
by the door.
Mother and baby were over by the gas fire.
She was kneeling on the floor. He was on his
back next to her, one knee partly raised.
I saw a rare opportunity.
Getting her attention, I asked his mother to
gently nudge the raised knee over towards
the other side.
She did. He rolled onto his tummy, raised his
head and smiled.
A first!
Now he would no longer be a passive child
lying supine on the floor.
Such an important new skill! So many proud
witnesses!
The high point of my career?
No, it was the baby who had showed me
what he was ready for.
33. Child
Look beyond
the plaster on her cheek
fixing the feeding tube.
Look beyond
the scar on her scalp,
the tube under her skin
draining the excess fluid
from her brain.
Look beyond
the blue tinge of her flesh
wanting oxygen.
Look beyond.
You will see a child
looking at you.
34. Baby
There is a dictum in the world of education
that there is no such thing as a child who cannot
learn, only a teacher who cannot teach.
I met my match with a baby who was born in crisis
and found to have brain damage.
I had worked with many such babies, usually in
their homes and always with a parent present.
They all learned something; perhaps about smiling,
rolling, turning to their name or holding a spoon.
These sorts of gains often came quite quickly.
But not with this child.
Nine months proved me an incompetent teacher.
Her mother looked in vain for progress.
She had been warned by the hospital doctors that
her child would not walk, talk, feed herself or
become continent, probably, ever.
At the end of one of my sessions, wholly taken up
with trying to soothe the crying baby, the mother
herself broke down in tears saying she was afraid her
daughter was going to die.
After she became calmer, she finished the thought,
‘I am also afraid she will live.’
35. Label
Please do not tell me, Doctor, that my baby is disabled.
It is such a leaden word to hang around such a young neck.
This medical label you would use (as if a label were
necessary) speaks only of what she cannot and possibly will
not do.
You can tell me her vision is impaired, her hearing is
limited, her brain is not sending the right messages to legs,
arms and hands. You can tell me her reflexes are immature
and that she is not yet doing what other babies of her age
can do.
Then I will tell you, if you will really listen and believe, how
she smiles when she sees me, laughs when I tickle her and
rolls to get her teddy. Then about the games we play in the
bath, how she touches my face, tries to sing, looks so sad
when I cry.
You cannot know what she will be doing next year or when
she is five years and ten years old. By the time she is fifteen
she might be into music, painting, swimming, horse-riding,
sailing. She might be in a group of mutually supportive
teenage friends.
When she is twenty-five she could be doing something
amazing to raise money for children in need. At thirty, a
way might be found for her to talk to medical students
about respect, rights and positivity. You have no idea what
abilities she is hatching.
Of course, as a young woman she might decide to adopt
the disability label as a political stance. Her choice entirely.
In the meantime, if you must have a label to hang on her,
please choose another word that is less condemning,
a word for which there is real evidence,
not one that is predictive guesswork in a negative mindset,
a word that is carefully selected to help her through her
unusual life.
Your disability label is not doing either of us any good.
36. Malcolm
I wonder how you are. I wonder where you are.
I am sure you heard our little Malcolm died. If not, then
I am sorry to give you such terrible news. He died in
hospital on February 22nd two years ago. It was 4.47 in the
afternoon.
I was with him.
I was angry when you left but I can understand your
despair. His birth was a horrendous experience for you, the
long hours of labour, the sudden emergency plan for a C-
section and then the doctor pulling him out with forceps at
the last minute. When they told us he had brain damage it
was more than either of us could bear.
I see now it was a bad decision for you to stay at home
with Malcolm while I finished my season with the orchestra.
I should have stopped work to help you. What difficult days
you had. Neither of us was sleeping, we were both short
tempered and always ready for a fight.
I remember the many hospital appointments you had to
take Malcolm to as well as managing all his procedures and
medications while you were exhausted. It was grossly unfair
of me to leave all this to you.
You know I always felt a special rapport with our little boy.
I could see a deep wisdom in his eyes as though he had the
answers to all life’s mysteries. I saw him as a special gift for
the two of us. If only I could have learned his language.
I know you do not agree with me on this, but it is what I
feel.
After you left he had so many emergency hospital
admissions, his life seemed to hang on a thread. He had
heart and lung problems, pneumonia, an operation to drain
fluid from his brain and an intestinal blockage that had to be
removed. Each time he came home with more tubes, more
medications and more danger signs to watch out for.
At first the doctors were understanding, explaining the
issues, giving options for treatment and leaving the
decisions to me.
As time went on though, they talked more about his level
of suffering, his quality of life until one of the options they
offered was not operating, not reviving him, letting him go.
Those were the time I most wanted to talk to you.
His last crisis was a major infection with a sky-high
temperature. The doctors made it clear they thought more
interventions were not in his best interests.
In the end, I followed their lead. When Malcolm did not
improve, they just did all they could to keep him
comfortable and pain free. That is when he died.
Our little Malcolm died!
If I could go back, I would make a different decision. He
trusted me to look after him and I betrayed him and you.
I want our little son back.
He was unique and very special. I miss him so much.
Where are you?
37. Psychologist
the psychologist came
stayed ten minutes
saw Pat in the kitchen
saw Pat and the wheelchair
saw strange movement
of face and hands
heard no words
he could decipher
wrote in his book
the child is ineducable
Pat cannot go to school
the family started
Pat on reading
the psychologist came
stayed ten minutes
saw Pat in the kitchen
in the wheelchair
saw Pat study words
point at pictures
wrote in his book
the child is educable
Pat can go to school
38. Nothing Special
Isobel’s mother was vulnerable and afraid
her baby would die if she brought her home.
She would go to her cot one morning and find her
dead. Staff on the neonatal unit knew three-month-
old Isobel was ready for discharge. They needed
the cot for other babies.
Isobel had suffered neurological damage and had
cerebral palsy and vision impairment. She was
fitted with a nasogastric tube, needed regular
suction to keep her airways clear and had an array
of daily medications. The paediatrician put the
family in touch with a home-visiting teacher. After
two or three weeks while everyone got to know
each other, Isobel went home.
The teacher, as the family’s keyworker, visited
three times a week for a couple of hours, building
a trusting relationship with Isobel’s parents, finding
answers to their questions and helping them spend
quality time with Isobel. Isobel’s mother became
gradually more relaxed and more confident in her
natural parenting skills.
The regularity of visits reduced during two years
until Isobel was offered a place in a special nursery.
By this time her mother was no longer vulnerable
or afraid. In fact, she had become strong, strong
enough to take on the education authority when
they were looking for a school with proper
support and strong enough to support other
families at the neonatal unit.
Parents told everyone their support could not
have been better. But all they had been given was a
person they trusted who could be with them as
they learned to value their own skills in bringing up
Isobel. Nothing very special in that.
39. On Hold
Roz and Jeb are arguing. They love each other and their
baby daughter, Tilly, but they are both tired and stressed.
The argument began about money. Debts are piling up.
Jeb is worried he might be demoted at work because
people are saying how tired he looks. He thought Roz
should cut back on spending. Roz reminds him how
expensive Tilly is; the special buggy, the therapists, taxi
rides to the hospital since she gave up her car. They have
cancelled their summer holiday and the proofreading
course that might have brought an income. She does not
buy clothes any more. What else can they cut back on?
Roz feels her life is on hold since Tilly was born and she
can see no end to it.
Jeb suggested he could find extra work for evenings and
weekends but Roz is horrified at the thought of having
even more time on her own at home with Tilly. Jeb says
he knows how tired Roz gets but that his life is not easy
either, running training sessions after only three hours
sleep.
Jeb tries to lighten the mood, telling her Andrew and
Pavel have invited them to their civil partnership
barbecue on Sunday. Roz is pleased to hear from them,
they are the only neighbours who have ever taken an
interest in Tilly. They had actually come round to ask
why Tilly had stayed in hospital after Roz came home
from the maternity unit. Roz feels bitter that other
neighbours, whom she used to consider friends, are
avoiding her. A couple of them cross over when they see
her coming with Tilly.
But, she says, she cannot go to the barbecue because her
hair is a mess, she feels drab, she has nothing she could
wear and she would have no interesting conversation
since she gave up her hotel work. Her life has such a
narrow focus now looking after Tilly.
Jeb tries in vain to persuade her. She wants Jeb to go
with Tilly and leave her at home to catch up on some
sleep. Jeb has another idea. They could ask Roz’s mum to
baby sit while they go for a ramble over the hills like they
used to before Tilly came along. This will not work, says
Roz, because her mother is afraid to look after Tilly since
she saw her having one of her fits. There is no point
asking her to baby sit again.
But Roz has been thinking. While they are at the
barbecue she will bring Tilly’s cot into their bedroom and
arrange the put-you-up for Jeb in Tilly’s room. That way
he would get more sleep and be more effective at work.
Jeb has no answer to this and goes upstairs because Tilly
has woken up and is crying.
40. Twosome
We were a successful team
- mother, baby boy and me.
We liked working together,
by now knew each other well.
One morning, seeing she was
distracted, not joining in,
I asked if perhaps she thought
the games inappropriate.
‘No’, she shouted, collapsing
into tears. ‘My husband
packed and left late last night.
He has abandoned us both!’
