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(April 2016)
If you would like a printed copy of this Newsletter then
please contact us:
Tel: 0300 111 2301

Newsletter Contents:

Hello from the Board!

Reflections on a Conversation

Hardware, Software and Volunteerware

Access All Areas

Being a People First Person

The Voice Project Wrap-Up

As we look at what CAIL does - using the lived
experiences of disabled people to inform
change - we are looking for new ways to serve
our communities. And as we do that we want to
build on the many successes of the
organisation, which include:

Hello from the Board!

This is my first article for our newsletter. As the
still-quite-new Chair of Cambridgeshire Alliance
for Independent Living (CAIL) I didn’t want to go
over the ground that Alena, our CEO, covered
in her article for the last newsletter. I wanted to
say something fresh. So let’s have a look at the
organisation from the Board of Trustees’
The Board is made up both of people who have
served the organisation for some years and
some who are quite new. That means we have
a good balance of skills, experience and
knowledge to take the organisation forward.
The Board is fully aware that CAIL is a user-led
organisation. This means that we do not just
work with disabled people, older people and
carers, but that we are made up of disabled
people, older people and carers. This is true of
our trustees, our staff and our volunteers.

Working with service users and
Cambridgeshire County Council to design,
deliver and evaluate adult social care
services across the county.
Collecting oral histories from disabled
people for our ‘Model Conversation’
project to evaluate how things have
changed from the past and to make
suggestions for the future.
Working with people who are already
using Direct Payments to meet their own
care needs and training them to become
Peer Mentors.

Building on our successes yet looking to serve
our communities in new ways means we need
to plan afresh to meet the challenges that will
face us in the future. As I write, we are coming
towards the end of a period consulting with

people and organisations interested in our work
on a new strategic plan for the organisation.
The Board’s aim is to have a new strategic plan
in place by this summer. It will cover the period
2016 – 2021 and guide our work for that period.

people I have interviewed have been extremely
open and honest about their experiences, good
or bad, challenging or embarrassing, scary or

It hasn’t all been sadness and difficulty though.
Lots of humour, lots of realism, lots of fortitude
and kindness – received and given – feature
None of the Board’s work would be possible
heavily in all the life stories I have heard.
without the hard work and commitment of our
Especially the humour for all of our respondents
staff team and volunteers. I want to thank them
had been in situations where to laugh was truly
for all they do and I want to thank my fellow
the only way to rationalise and deal with what
trustees for their support too.
was happening – one interviewee was punched
in the face by a member of the clergy due to a
laughable misunderstanding; another had their
Paul Taylor - Chair of the Board
day brightened by a chance encounter with a
(sadly now-disgraced) Seventies pop star; yet
another was once responsible for accidentally
Reflections on a Conversation
instigating a State of Emergency in the Indian
region of Uttar Pradesh.
A continual theme was a dislike of so-called
inspiration porn – the idea that because you
may have a disability you are an inspiration to
people just for doing something relatively
normal. This attitude was a source of
frustration and anger to more than a few of our
subjects. As one of my respondents put it after
a friend of his had congratulated him on his
beverage-making abilities: “I am not a hero
simply for making a cup of tea.”

Nobody (with the possible exception of one of
my neighbours) can talk forever. All
conversations must at some point end. Thus it
is with The Model Conversation, CAIL’s oral
history project, which has been talking to people
with disabilities or long term health conditions
for the last ten months, asking how the move
from the Medical Model of Disability to the
Social Model of Disability has impacted upon
their lives.

But the project is not over yet. There are a
handful of interviews still to conduct, we are still
in the process of shooting the accompanying
documentary, and will soon begin trialling the
educational material we have created for Key
Stage 3 of the National Curriculum.

So what have we learnt?
Firstly I have been continuously surprised by
people’s willingness to share their stories with
me. Oral History is a meticulous process, often
asking people to reveal things about
It’s been an exciting time, and it isn’t over yet!
themselves that they have not articulated
before, and sometimes to speak of things that
they would rather never have experienced and Justin Craig - The Model Conversation Project
have no desire to retell. Almost universally the Leader

Hardware, Software and Volunteerware
Hi I’m Martin Smith and I am the volunteer
System Administrator for CAIL I will give a brief
outline of the volunteer work I have carried out
for CAIL, I promise to try to not get too “techie”,
apparently a fault of mine!
As an introduction, my main hobby for the last
25 years has been taking apart, fixing,
upgrading and generally improving computers
for friends and family. I became a self-taught
“professional”, because I wanted to rather than
had to.

relevant project or position required, installing
and setting up any software that was needed for
that specific position. With the expansion we
have installed hardware to allow more PCs to
access the network, obtained a dedicated
internet line. Installed both a dedicated backup
device and repurposed an older PC that was
replaced, as a dedicated share PC. This now
holds all the shared files and backups of each
PC in the office.

Lately I have supplied a fairly current PC to act
as a remote access server, after installing the
remote access software, office members are
able to access and update files that are on the
In 2007 I was involved in a “non-fault” car
office network either from home, or whilst
accident that caused severe whiplash and since visiting a client’s house. This enables urgent
has caused constant back and neck pain.
information to be available even when not
Although not classed as a disability, this has
physically there.
given me some mobility issues and not allowed
me to return to work. The one upside of this is I enjoy volunteering at CAIL as in improving the
that I am available to visit CAIL during the day, office IT structure, it is helping to provide
when any issues occur.
assistance to people with support needs. I
hope this has given a small insight into what
In January 2013 I was asked by CAIL to have a goes on behind the scenes, to help organise the
look at the current setup, to give advice and
support the organisation needs, to provide
suggest improvements on the way the office
support for its clients.
was using their computers. At the time the staff
and volunteers were all using fairly basic
laptops. The internet access was through a
wireless connection, kindly provided by DISH
(Disability Huntingdonshire) in the adjacent
I had three older PCs and a server PC, which
after upgrading were much more suitable for the
office needs, these I donated. I then donated a
wireless router to network the PCs together with
cables. This also allowed both access to the
internet for all PCs, and wireless network and
internet access for volunteers, with their own
laptop, who usually worked out of the office.
Once the network was set up, there was a
shared folder on one PC where all the office
both stored, and had access to, the needed
After discussion with the trustees we obtained
Windows and Office software from Microsoft,
through their charity scheme. Now all of the
computers had the necessary software, and all
the relevant files needed for the running of the
office were available to all.
Since then I have often volunteered my time
and advice. The office has expanded with new
volunteers and staff, I have advised on
obtaining the best PC and software for the

Martin Smith - System Administrator

Access All Areas:

Access All Areas was probably our most
ambitious Cross Board event yet! In light of
‘Transforming Lives’ - Cambridgeshire County
Councils new way of delivering social care,
alongside the impending financial savings, we
wanted to showcase some of the many and
varied non statutory activities available across
the County. We hoped to help people think
about what they could access or set up in their
community to help them stay well and

We had a bustling marketplace with
organisations and community groups on hand
to tell people what they had on offer. But more
importantly, we had a number of speakers who
talked about what they were involved in that
had a positive impact for them. Our heartfelt
thanks go particularly to Partnership Board
members Mick Scadden and Enid Wheatley
who spoke passionately about the sports
activities and craft group they are respectively
involved with. It turns out that the benefits they
get go far beyond getting a bit of exercise and
doing some craft; friendship, social interaction,
confidence boosting and expanded
opportunities to name but a few.

We are also very grateful to Care Network who
played an important part in the day. Lynne
McCauley, Community Development Manager
talked about how they can help people set up
and sustain local groups, whilst Enid InstoneBrewer offered ‘live’ community navigations.
We had speakers too from Walking for Health

who spoke enthusiastically about the benefits
being a walking group member has had on their
physical and mental health. The day was
topped off by some fun accessible sports,
courtesy of Power2Inspire, I don’t know about
anyone else but I discovered a competitive
streak I didn’t know I had!

that ‘disables’ us rather than the conditions of
our body. I struggle with the term ‘disabled’ just
because I use an electric wheelchair, doesn’t
mean I am any less of value than anyone else.
I’m still the same optimistic person who likes a
challenge and enjoys helping people reach their
full potential. The list of everyday things that
‘disable’ me are endless. For example, I have
to call up 24 hours in advance if I want to use
our local Stagecoach busses and my local train
station has no lifts to the platforms. I can’t use
London Underground and taxies are a
nightmare. I can’t get into most pubs, hotels,
shops and restaurants where I live and I can’t
visit people in their homes or go to parties and
why can’t they put mirrors in accessible toilets?

For so long
after I had to
retire from
work I felt
and yes
Looking back
now, I’m just
angry. My
last job was
as a part
university lecturer, and I absolutely loved it.
Helping students understand the world of
business was totally engaging and they
invariably taught me more than I ever did them.
We were only able to showcase a fraction of the Unfortunately, I have a degenerative
great stuff that goes on in communities across neurological condition called Ataxia. This
the County, but we hope we gave people a
meant that I was exhausted all the time.
flavour of what’s possible. We hope people left Marking students work definitely got the better
inspired to look more to their own communities of me, so much so, that eventually I messed up
for opportunities. Thanks to everyone who
and was told that I would not be hired the
came and helped make the day the success it
following term. I can’t believe how easily I
resigned myself to a life of sickness and
daytime television.
Beth McCabe - Partnership Board
Development Officer
Not now! It would have been so easy for them
to give my marking to someone who was better
at it than me – and give me more teaching
Being a People First Person
hours, the thing I was good at.
When I first learned about the Social Model of
Disability, it made me very angry, why hadn’t
someone told me about this before. It changed
my whole outlook on life, and definitely changed
the way I expected to be treated.
Supporters of the ‘Social Model’ believe that it is
our surroundings and the way we are treated

It took me a good few years to get my
confidence back. I am a ‘people first’ person. I
hate the term disabled people or even worse
handicapped people. I am a the same person I
always was, I just needed a different form of
transport to get about.

Eventually I was looking around for something
to do when I found DISH, an information
helpline for people with disabilities. DISH
allowed me to use all my hard learned
experiences to help others who were going
through the same things. They made me feel
valued again and introduced me to a new
charity The Cambridgeshire ULO who wanted
to give a voice to people with disabilities, their
families and their carers.

Disability Information Service Huntingdon:
Cambridgeshire Alliance for Independent
Living project: The Model Conversation:

Not long after I joined the ULO’s board of
trustees they sent me on a course
‘Leadingability’ run by the Essex Coalition for
Disabled People and that’s where I learned
about the Social Model. The frustrations
around where I could go and what I could do fell
away and I turned all those negatives into
positives. Now I am trustee of three charities
and am a support worker for my local branch of Judith Margolis - Trustee
the MS Society (Ataxia and MS have similar
The Voice Project Wrap-Up
As trustee for the CAIL my role involves bidding
for funding for new projects, all focussed on
The Voice Network Project was a 3-year project
giving people with disabilities a voice. Our
funded by the Big Lottery Fund.
newest project is called The Model
Conversation and is funded by the Heritage
The aim of the project was to engage older
Lottery. We are recording interviews with local adults and disabled people in Cambridgeshire
people to see if the Social Model has affected
to use their lived experiences to improve
their lives too. The interviews will be recorded aspects of quality of life.
and made into a documentary to be used as an
educational resource so that more people learn This was to be achieved through 4 specific
how valuable and able we all can be.
outcomes between May 2012 and August 2015.
For more resources to explain the Social Model
see :

Outcome 1: disabled/older people facing
social disadvantage will increase their
confidence and skills enabling them to
achieve personal and professional goals.

21 volunteers completed our volunteer
training programme
74% of these volunteers had additional
support needs, were older or carers for
people with disabilities.
The volunteer training programme

Introduction to Social Model of

Confidence building and listening

Outreach skills

Safeguarding of Children, Young
People and Vulnerable adults

The project evidenced the benefits of positively
recruiting people with disabilities to be
volunteers and what positives they bring to the
role and what they get out of the experience.

good use and that it doesn’t go to waste”.
Outcome 2: Disabled/older people facing
social disadvantage will improve access to
local services and activities and thus
experience reduced social exclusion/
Team members gathered 441 experiences
about services and issues that made life more
difficult. These were reviewed and it was
identified that they fell into a range of themes.






























In identifying themes, actions were then taken
to make changes.
Outcome 3: Disabled/older people facing
social disadvantage will better understand
how to advocate for disability rights,
resulting in greater personal empowerment.
These experiences were gathered at 101
events across the county:

In interviews with volunteers, one volunteer
talked frequently about their gradual increase in
confidence and self-esteem and that this “made
their whole quality of life better. I’m feeling
much more myself now - what’s normal for me”.
In another volunteer it was observed during the
interview as throughout dialogue they talked
about the skills, professional experience and
lived experience that he brought to the project
“I’ve been doing this sort of thing for so long
now. It feels really good that I can put this to

As themes emerged from the experiences,
events were organised to feedback experiences
to local service providers, gather new
experiences from disabled/older people and to
provide an opportunity for local service
providers to seek feedback and disseminate

172 people have attended the following events:

12 people attended the Talk about
Transitions event

66 people attended the 3 Transport Focus
Group meetings

27 people attended the Consultation event
on Consultation

67 people attended an event on Crime,
Prevention and Safety

relevant council officer to discuss concerns that
were identified. As a result the council made
changes to the consultation process by
ensuring that they consulted not just local
councils but also made contact with local
charities and support organisations to make
sure that people were aware of the proposed
changes and how they could influence them.
Another example is that many people raised
concerns about the roads and pavements in the
county. The Voice Network Project was able to
tell people about how they can tell the council
about these issues (eg by phone or through the
council website). CAIL also visited areas of
concern with people and using their words and
through photographs were able to pass the
information on to the council’s highways agency
so that they could plan for repairs to be carried
out where appropriate.
Outcome 4: disabled/older people facing
social disadvantage will better understand
how to sue and take-up Self Directed
Support, enabling them to improve their
quality of life.
This was the hardest outcome for CAIL to
deliver. Training and support were offered and
this was taken up by approximately 70 people.

An example of how a theme raised led to
actions being taken by others is concerns
raised about the Wheelchair Service. People
told us about the waiting times for assessments
and repairs. We held listening events to gather
more experiences. These were compiled into a
report and shared with the Commissioner of the
service and Healthwatch Cambridgeshire.
CAIL, Healthwatch and local charity
Pinpoint then worked together to develop a
survey to gain a greater understanding of the
Another concern that resulted in changes to a
process involved the County Council. The
council are currently undertaking a streetlight
replacement programme throughout the county.
There is a consultation process about this, but
people with disabilities reported that
replacements were happening but they only
found out about it when the contractor turned up
and carried out the works. CAIL and a member
of the community met with Councillors and the

A key issue was that the ‘landscape’ of social
and health care had changed during the life of
the Voice Network Project. These resulted in
the county council undertaking a review of
Direct Payments and explore the barriers that
prevented people taking up the opportunity to
manage their own support.
As a result of CAIL’s experience of attempting
to deliver this outcome and the changing
environment in social and health care, CAIL
were successful in applying for funding (from
Esmee Fairburn Foundation) for a more
comprehensive project, called Voices4Choices.
This is an exciting project where people who
already receive Social Care Direct Payments
provide information and support to people who
are either interested in taking up them up or
want to learn how to manage them better.
Volunteers, called Peer Mentors, will receive
training and support from Cambridgeshire
Alliance for Independent Living and Penderels
Trust. Peer Mentors will then provide support to

people who are new to Social Care Direct
Payments or less confident about the
application and administration process. The
aim is that, with the right support from Peer
Mentors, people will have increased confidence,
skills and knowledge to successfully manage
their own Social Care Direct Payments and
make choices that are right for them.
If you want to know more about the project,
contact Graham by email on or by
phone on 0300 111 2301
Graham Lewis - Development Officer
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Independent Living, All rights reserved.
Charity no: 1132290
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