1

Empowering people with cerebral palsy and other related

disabilities since 1947 Registered charity no:

529464

Fulfilment through Achievement: The History of

Cerebral Palsy Midlands and its community of people 1947 -

2014

Resource Pack for schools & other

groups

2

Contents What is cerebral palsy? (Page 3)

Background to Fulfilment through Achievement: The

History of Cerebral Palsy Midlands and its community of people 1947 – 2014 (Page 5)

History of Cerebral Palsy Midlands (Page 6)

Cerebral Palsy Midlands: Today (Page 12)

Notes for Teachers and Group Leaders Visiting Cerebral Palsy Midlands’ Heritage Exhibition

(Page 13) Health and Safety/Risk Assessment (Page 14)

3

What is cerebral palsy? Cerebral Palsy is not a single condition of disability. It is essentially an umbrella term

to describe different conditions that can cause physical, learning and communication

difficulties for an individual. Although the main condition can be with difficulties with

muscular and/or precise movement in one or more parts of the body, these

conditions are caused due to brain damage before, during or after birth, usually

caused by oxygen deprivation.

The term ‘Cerebral’ refers to the two halves or hemispheres of the brain. The

Cerebral Cortex is the part of the brain that sends messages to muscles to control

co-ordination and movement. The term ‘Palsy’ refers to the loss of impairment of co-

ordination and motor function.

Due to the complexity of the brain, different parts of the brain can be damaged due

to lack of oxygen. Even though on the whole muscle movement can be impaired, it is

the damage to parts of the brain which disrupts the brain’s ability to control muscle

movement and co-ordination.

People with cerebral palsy can have a wide variety of symptoms, which can include;

4

Lack of muscle co-ordination when performing movements

Stiff and/or tight muscles and exaggerated reflexes

Walking with one foot or leg dragging

Walking on toes/a crouched gait

Variations in muscle tone, too stiff or too floppy

Difficulties swallowing

Difficulties with verbal communication

Shaking and/or random involuntary movements

Difficulty with precise movements/motions, such as picking up a cup or

buttoning up a shirt. Reflexes and dexterity can also be impaired

Symptoms of cerebral palsy can be very different from one individual to the next, and

could change over time, although the cerebral palsy does not increase in severity.

Lack of usage of muscles can lead to a faster decline in physical capability.

Many individuals with cerebral palsy can also have the following conditions. This is

because the brain is complex and other areas can be damaged, leading to the

following possible conditions;

Learning Disability: Two thirds of individuals with cerebral palsy will have

some form of learning disability.

Impaired Vision, Hearing or Speech: individuals can have some form of

impaired vision, hearing or speech, with some individuals having severe

verbal communication difficulties. Generally one third of individuals with

cerebral palsy will have difficulty forming words and speaking clearly.

Spinal Deformities: Deformities of the spine – curvature (scoliosis),

saddleback (lordosis) and humpback (kyphosis) can be associated with

cerebral palsy. Spinal deformities can make sitting, standing and walking

difficult and cause chronic back pain.

Drooling: Some individuals with cerebral palsy drool because they have poor

control of the muscles of the throat, mouth and tongue. Drooling can cause

severe skin irritation. The condition of drooling can also isolate people from

their peers.

5

Background to Fulfilment through Achievement: The History of Cerebral Palsy Midlands and its community of people 1947 – 2014 The initial idea of a heritage project on our charity

came to fruition in late 2011. The 65th Anniversary

of the charity being formed was due in June 2012,

and it was felt that devising a heritage project to

celebrate our 65th Anniversary and our rich history, would be hugely beneficial to the

profile of the charity and the community of people that it empowers and supports.

The following benefits of having a heritage project were identified;

1. Engage our community of people in our heritage, including their own life

stories and associations with CPM. Many of the people we support have been

users of our charity for many years. We believed that a project of this design

would ‘reconnect’ people to our proud heritage.

2. People’s life stories would be archived and documented, getting across an

awareness of how life is like living in Birmingham with disability in the modern

era. The project would help bring the subject of disability history into our local

community.

3. Our heritage would be archived for future use, preserving the life story of a

long serving charity.

In November 2011, a pre application was submitted to the Heritage Lottery Fund.

The idea of a pre application was to initially give a draft idea of our project proposal

to HLF, so that we could gain critical advice and feedback on our ideas.

Between January to March 2012, we worked on our full application to HLF. It was

submitted at the end of March, and in late June, we were notified that we had been

successful.

6

Aims of the Project – what we want to achieve

1. To conserve the individual life stories of people

who are living with cerebral palsy and other related

disabilities in Birmingham and its surrounding areas since

1947.

2. To inform and educate people from different backgrounds and ages on the

challenges and successes people with cerebral palsy and other related

disabilities have had during the 20th century and into the 21st century.

3. To conserve and display the heritage of Cerebral Palsy Midlands, its work and

the people who have been a part of it.

4. To have a wide range of participation in our project, from people who have

been directly and indirectly involved with our heritage, to developing a

volunteer programme where people can get involved with researching our

heritage.

5. To produce a 65th Anniversary Book to highlight the heritage of Cerebral Palsy

Midlands and its community.

6. To display our heritage through an exhibition.

History of Cerebral Palsy Midlands

Cerebral Palsy Midlands came into

existence largely through the interest and

influence of two prominent local figures,

both of whom had children with cerebral

palsy. Paul Cadbury, of the famous

Bournville family, and Stephen Cadbury,

both realised that there were no services

throughout the Midlands for children and adults with cerebral palsy. Following the

aftermath of the Second World War and the outcomes that had come out of the

conflict, people wanted massive changes to daily life, and certified welfare services

for the general public.

Paul Cadbury, Dr Earl Carlson & Stephen Qualye,

three important individuals in the creation of the MSA

7

The famous Beveridge Report of 1942 was a big indication of

what was needed to be done in terms of welfare reform. Sir

William Beveridge proposed that there needed to be changes

to the system to support people who were in need of help, or

in poverty. The report highlighted five major problems, those

being Want, Disease, Ignorance, Squalor and Idleness.

Beveridge believed in trying to minimise these problems by

there being good health care, education, housing,

employment and income for everyone. Indeed, the 1944

Education Act was the stepping stone to a proper education

system, for the provision of education for children. This was

further enforced in 1948 with the National Assistance Act,

which laid down what care should be in place for people with

disabilities.

In the USA, Dr Earl Carlson, a specialist in the subject of cerebral palsy and a

founder member of The American Academy for Cerebral Palsy and Developmental

Medicine, was making huge strides in the study of cerebral palsy. Dr Carlson himself

had cerebral palsy, and following a meeting with Mr Cadbury in New York, was

invited to come over to Birmingham and discuss ways of setting up services for

people in the Midlands, in 1946.

Dr Carlson, Mr Cadbury and Mr Qualye met with members of the local council and

health authorities, with the aim of creating services for people with CP in

Worcestershire, Warwickshire, Shropshire, Staffordshire and Herefordshire. A major

outcome of this meeting was the creation of the

Midland Spastic Association, on the 21st June 1947.

The MSA, as it came to be known, purchased a large

house in Victoria Road, Harborne, to be renovated into

a school for children with CP. Carlson House School

became the first school in England and Wales to be

dedicated directly to the education of children

Sir William Beveridge,

“The object of

government in peace

and in war is not the

glory of rulers or of

races, but the

happiness of the

common man”

Carlson House School in the

1960’s

8

specifically with CP. It was opened in September 1948, with

Miss Christine Woodall (later to become Mrs Christine Brown)

as the first Head Teacher.

MSA, like many charities in their infancy, faced many

challenges during its early years, with one of its major

challenges being to trace children and adults who lived in the

Midlands with CP. In 1950, our first Welfare Officer, Mavis

Taylor, was appointed with the task of tracing and visiting

families. She originally started off in a small room in Carlson House School, with a

list of 600 names and addresses, and not much more!

In her early work, Miss Taylor noticed that many

children were not getting an education, and that

residential care for adults did not really exist. Through

giving advice to parents, more children came into

contact with the school. Also, as the 1950’s

progressed, more adults were also coming into contact with the charity. In response

to this, a welfare building was built next door to Carlson House School, to provide

day care and activities for adults. This building, known as ‘the hut’, was very basic in

terms of facilities, but provided much needed activities and services for adults.

A second Welfare Officer position was created, with Mr

Peter Barrett taking the post, as the number of people

supported by the charity rose from 600 to 1,700. To support

this work, the MSA ‘Action Group’ was setup, primarily

comprised local people and parents. This group helped out

with many issues that the charity faced, especially in

advertising and fundraising.

Further development during this decade was the formation

of social clubs for people who attended the welfare

building. The first club, ‘The Helping Hand Youth Club’, proved to be a fantastic way

Miss Christine

Woodall

Art lesson at Carlson House School

Fundraising for the MSA,

1960’s

9

for teenagers to mix and socialise with people their

own age. Other clubs were also setup during this

period, with The Pathfinders Club on Monday nights

for adults, in 1955, and then The Adventurers Club on

Wednesday nights in 1959. The Pathfinders Club still

meets today on a monthly basis.

The development that the charity went through during the

1950s meant that its current facilities, namely the Welfare

Building, had to be enhanced or replaced with better

facilities, to cope with the growth in the number of people

using the charity.

Following the decision to develop new, purpose built premises;

our current building was built in the early 1960s. The Centre, as it

is still labelled now, made a positive impact on the charity’s work,

allowing more activities to be run. The centre provided

new facilities, such as a workshop, activity hall, kitchen

and administration offices, plus proper office space for the

Welfare Officers. The workshop was used for activities

such as craft work, woodwork and basket making. Many

products of high quality were produced over the years,

many of which were sold and used as a source of

fundraising.

The 1970s saw an expansion to the activities of the charity.

A horse riding group was created in conjunction with the

Riding for the Disabled Association (RDA). Every year, the group has provided

fulfilment to many hundreds of people. New educational and life skill classes were

also developed during this period, such as English, Social Studies, Music, Art and

Cookery. These activities supported people in developing everyday skills that

enriched their lives.

‘The Helping Hand’ Youth Club

Our current centre in the

1960’s

10

The 1980s brought about a huge change in attitude towards people with disabilities

throughout society. Radical change came about and the work of the charity adapted

to these new attitudes, which were for greater equality and freedom for people with

disabilities. The attitude of the charity changed from that of a parental view towards

people, to one of an empowering view, which promotes an individual’s freedom of

choice and independence, through every aspect of their life.

1981 was the International Year of Disabled People, and the following year, an

exciting idea became reality at the centre, when a new training flatlet was opened.

The flatlet, set out like a one bedroom flat with its own kitchen, was seen as an

opportunity to enable people to gain greater independence and valuable knowledge

in life skills, such as cooking, money management, social skills and personal

hygiene, plus how to look after their own accommodation. 1982 also saw the closure

of Carlson House School. The school, which had helped to educate and enrich the

lives of children with CP, gave way to a supported accommodation development.

Carlson Park has been a huge success in supporting people achieves their own

independence.

1987 saw the MSA celebrate its 40th Birthday, and Carlson

Park and its 45 flats were ready for their new tenants. The

Princess Royal was invited to open the flats

officially in October of the same year, and

famously gave MSA officials and the local

press a shock by arriving at the MSA welfare

building and not Carlson Park! She toured the

flats, the centre and met many people.

In 1996, the charity changed its name to MSA

for Midland People with Cerebral Palsy. The

change in name came about from the people the charity supports. Deleting the term

‘spastic’ from the name of the charity was very importat for people within the MSA

community, as the term had unfortunately become a derogative term in society,

rather than just a descriptive term of a disability. Since 2000, we have seen a change

in how the charity measures its success. Originally success was measured in terms

Princess Anne visits the MSA and the newly

opened Carlson Park, 1987

11

of how many activities the charity had to offer. Our success is now measured in how

people have more choice in life; for example, what to spend their money on,

accessing the community and choosing what services they wish to use. Success is

now measured in empowering people.

In October 2004 at our AGM, our members voted for a change in name from MSA for

Midland People with Cerebral Palsy, to Cerebral Palsy Midlands. The idea of

changing names was for people to focus more on the condition and to increase

awareness in society. The charity was re launched

in October 2005, with the mission of promoting

empowerment for people within its community of

interest. Following recommendations from Inlogov

School of Public Policy of The University of

Birmingham, the charity remodelled itself around

new core projects, called URconnectABLE, LIFE

Skills and Person 1st, all centred towards promoting

peoples’ independence and gaining empowerment.

We have also created new projects, within the

subjects of Art and Music, to press forward peoples’ talents.

We have also linked with different organisations through active networking, to

improve the work of CPM, and help other third sector organisations in their own

work. We have networked with European organisations who work with people with

disabilities. Since August 2010, we have been involved with a project called

Makeable, working with partner organisations in Belgium, Czech Republic, Italy,

Slovakia and Spain. These organisations visited CPM and Birmingham in June 2012,

to help us celebrate our 65th Anniversary, and so celebrate our heritage and what we

have always wanted to do, in striving towards full empowerment for all people with

disabilities.

The charity is re launched as

Cerebral Palsy Midlands, 2005

12

Cerebral Palsy Midlands: Today

Cerebral Palsy Midlands empowers and supports people with cerebral palsy and

other related disabilities from across Birmingham and the West Midlands.

Based in Harborne, the charity runs a community centre that provides much needed

daycare, activities, training and educational courses for adults over the age of 19.

We run art and music projects (VeraNicArt and Being Heard respectively) that

support people in developing their talents in these fields. We also run life skill training

in literacy, numeracy, IT studies, cooking, health and wellbeing, plus a Personal and

Social Development/Craft and Design course, which is facilitated by CareFirst Ltd.

We also have a monthly social club called Pathfinders, and we organise short break

holidays throughout the year.

We have an informed advocacy and advice service called URconnectABLE

(pronounced “You are connectable”). Our social work team supports people and their

families and carers with many issues, such as accessing supported/independent

living, rightful benefit applications, care planning, accessing services, plus

representation at tribunals.

13

Visiting Cerebral Palsy Midlands’ Heritage Exhibition Our Heritage Exhibition was officially opened to the public on Thursday 27th February

2014. The exhibition is fully open to the public, school groups and other groups on a

weekly basis from Monday to Friday (9.00am to 4.30pm). We can also organise

group visits outside of normal working hours to suit the requirements of your group.

Group visits can include the following activities;

An Introductory Talk about the origins of our heritage project, its aims and

objectives.

A presentation on our historical findings and research. This could include

discussions on disability history and the co-ordination of our oral history

programme.

A guided tour of our exhibition.

Light refreshments and welcome drinks can be provided.

We can also tailor visits to match National Curriculum requirements at

primary/secondary level.

Address & Contact Details

Adam Siviter (Development Officer)

Tel No: 0121 427 3182

Email: asiviter@cpmids.free-online.co.uk

Lottie Clark (Heritage Project Co-ordinator)

Tel No: 0121 427 3182

Email: cclark@cpmids.free-online.co.uk

Cerebral Palsy Midlands

17 Victoria Road

Harborne

Birmingham

B17 0AQ

www.cpmids.org.uk

www.facebook.com/CerebralPalsyMidlands

14

Health and Safety/Risk Assessment

Our community centre in Harborne is a busy daycare

environment, as well as a venue of activities, training and

educational classes. For school groups, it is recommended

that visiting teachers make a pre visit to our community centre

to discuss a visit and also assess any health and safety

matters with charity staff. A risk assessment should be completed by the appropriate

teaching staff and a qualified first aider should accompany the school group. It is

also important for support staff to be made aware of the risk assessment and the full

details of the visit. Supervision of attending pupils is essential, and it is not

recommended that a visiting group size be no larger than 20 pupils.

For other groups, it is desirable for group leaders (but not essential) for group

leaders to make a pre visit to our community centre and to carry out their own risk

assessment.

To discuss health and safety, risk assessment matters or to enquire into Cerebral

Palsy Midlands’ risk assessment regarding group visits, please contact Adam Siviter

on 0121 427 3182 or email at asiviter@cpmids.free-online.co.uk