These slides accompany Prof Chris Hatton's keynote lecture: How does research have an impact on the daily lives of people with learning disabilities? Chris discusses how research can, or could, have an impact on policy and on the lives of people who are learning disabled. He considers whether #JusticeforLB and the #LBBill can be considered a 'charismatic' approach to bringing evidence to ideas, that are then brought to public policy.

1. How
does
research
have
an
impact
on
the
daily
lives
of
people
with
learning
disabili7es?
Sea:le
Club
Conference
2014
Chris
Ha:on

2. How
does
research
have
an
impact
on
the
daily
lives
of
people
with
learning
disabili7es?
Sea:le
Club
Conference
2014
Chris
Ha:on

3. Twee7ng?
#sclub14
@chrisha:oncedr
@ihal_talk

4. Today
• How
does
evidence
have
an
impact
on
policy
(and
then
have
an
impact
on
people’s
daily
lives?)
– Findings
from
public
health
– Some
examples
I’ve
been
involved
in
• Research/academia
–
the
view
from
outside?
– Ins7tu7onalised
limita7ons
of
learning
disabili7es
research
– Evidence
and
experience
• What
to
do?

5. How
does
evidence
have
an
impact
on
policy
(and
then
people’s
lives)?
• All
share
a
mo7va7on
to
make
a
difference
through
research?
• All
have
(explicit
or
implicit)
theories
of
how
research
does
(and
doesn’t)
have
an
impact
on
people’s
lives?
• Cartoon:
Young
Nonprofit
Professionals’
Network
of
the
Twin
Ci7es

6. Is
the
rela7onship
between
research
and
policy…
1. Technocra7c,
instrumental?
• “Research
evidence
is
(or
should
be)
one
of
the
key
factors
influencing
policy
decisions
but,
unfortunately,
‘poli7cs’
o^en
gets
in
the
way
and
researchers
do
not
always
produce
the
right
kinds
of
evidence.
• To
improve
the
use
of
evidence
in
policy,
researchers
need
to
develop
be:er
rela7onships
with
policymakers…and
focus
on
producing
policy-­‐relevant
research”

7. Is
the
rela7onship
between
research
and
policy…
2. Complex,
messy?
• “A
mul7tude
of
factors
influence
policy
decisions
and
seemingly
small
factors
can
lead
to
significant
changes...The
policymaking
process
can
be
so
complex
that
chance
can
play
an
important
role.
• …Researchers…need
to
act
as
(or
engage
the
services
of)
‘policy
entrepreneurs’
who
will
work
to
promote
their
favoured
‘policy
solu7ons’…,
adap7ng
solu7ons
to
exploit
emergent
‘policy
windows’”

8. Is
the
rela7onship
between
research
and
policy…
3. Norma7ve,
poli7cal
&
interest-­‐based?
• “Policy
decisions
largely
the
result
of
poli7cal
ideologies/interests.
Research
may
inform
ideological
posi7ons
but
only
likely
to
be
overtly
employed
by
policy
actors
when
it
supports
(or
at
least
fits
with)
overarching
ideological
framework
or
interests.
• By
developing
closer
rela7onships
with
policy
actors,
researchers
likely
to
increase
flow
of
research
into
policy
but
only
if
it
complements
dominant
ideologies/interests.”

9. Is
the
rela7onship
between
research
and
policy…
4. Democra7c,
conceptual?
• “Policy
decisions
informed
by
public
percep7ons
&
values
&,
over
long
periods,
research
cumula7vely
informs
these
percep7ons
&
values.
While
researchers
may
occasionally
influence
policy
directly,
more
common
research
influence
via
contribu7on
of
knowledge
to
shi^ing
conceptualisa7ons
of
issues.
• This
informs
context
in
which
policy
decisions
are
made
(importance
of
concepts,
languages
&
discourses)”

10. Is
the
rela7onship
between
research
and
policy…
5. Construc7vist,
sociological?
• “Rela7onship
involves
mul7-­‐direc7onal
‘interplay’
(policy
influences
research
as
well
as
the
other
way
round).
• Importance
of
language
&
discourse,
as
the
knowledge
‘exchanged’
is
a
malleable
en7ty…”
• “…More
helpful
to
think
of
ideas
(rather
than
evidence)
as
unit
of
analysis.
• Need
to
carefully
unpack
how
knowledge
claims
are
constructed
&
translated,
&
to
explore
the
decisions
that
researchers
and
policy-­‐makers
make”

11. Findings
from
public
health
• How
and
why
does
some
public
health
evidence
translate
into
policy
and
ac7on,
and
some
doesn’t?
• Katherine
Smith
suggests
that,
to
be
‘successful’,
strong
evidence
alone
isn’t
enough.
– Evidence
needs
to
become
an
‘idea’
that
can
fit
within
prevalent
‘ins7tu7onalised
ideas’
– ‘Idea’
needs
to
be
boosted
by
‘policy
facilitators’
• Cartoon:
Young
Nonprofit
Professionals’
Network
of
the
Twin
Ci7es

12. Ins7tu7onalised
ideas
‘Received
ideas’
–
the
fundamental
(and
largely
unques7oned)
assump7ons
made
by
poli7cians
and
policymakers
Highly
relevant
when
thinking
about
policy
&
people
with
learning
disabili7es
1. A
medical
model
of
health
[disability?].
Good
health
is
the
norm
from
which
ill
health
deviates.
Health
is
individual
responsibility
and
medical/health
interven7ons
are
the
solu7on
2. Economic
growth
is
the
primary
objec7ve
of
(all)
policy

13. Policy
facilitators
Increase
the
chances
of
an
idea
being
taken
up
and
implemented
1. Present
a
posi7ve
policy
alterna7ve,
rather
than
the
idea
being
just
a
cri7que
2. Build
a
broad
coali7on
with
an
agreed
idea
&
a
specific
programme
3. Have
an
idea
that
can
be
implemented
in
exis7ng
ins7tu7onal
structures
(e.g.
health
service)

14. Evidence
to
idea
to
policy:
Public
health
Medical
Model
Economic
Case
Posi0ve
Alterna0ve
Broad
Coali0on
Fits
Into
Exis0ng
Structures
‘Successful’
Tobacco
control
Yes
More
produc7vity,
less
health
service
spend
Smoking
cessa7on
Public
ban
Yes
Within
health
service
‘Flexed’
Mental
health
Yes
Employment
Easy
&
quick
access
to
CBT
Yes
IAPT
within
health
service
‘Cri7cal’
Health
inequali7es
No
–
social
model
Not
really
made
Not
ar7culated/
agreed
No
-­‐
fragmented
Cuts
across
govt
structures
-­‐
societal
‘Charisma7c’
?
?
?
?
?

15. Evidence
to
idea
to
policy:
Some
things
I’ve
been
involved
in
Medical
Model
Economic
Case
Posi0ve
Alterna0ve
Broad
Coali0on
Fits
Into
Exis0ng
Structures
‘Successful’
Annual
health
checks?
Yes
Less
health
service
spend
(in
long
run)
Annual
health
checks
Yes
Within
primary
care
‘Flexed’
Personal
budgets?
No
–
but…
Be:er
outcomes
at
no
extra
cost
Personal
budgets
Yes
No
–
but…
‘Cri7cal’
Health
inequali7es
No
–
social
model
Not
made
Not
ar7culated/
agreed
Beginning
to
form?
Cuts
across
govt
structures
-­‐
societal
‘Charisma7c’
LB
Bill?
No!
Trying
to
build
argument
for
no
extra
cost
LB
Bill
Forming
No
–
legal
underpinning

16. Successful?
Annual
health
checks
for
people
with
learning
disabili7es
• High
priority
for
DoH
to
address
health
inequali7es
of
people
with
learning
disabili7es
triggered
by
‘Death
by
Indifference’
• Clear
proposal,
with
some
evidence,
located
in
one
service
(primary
care)
• Na7onal
incen7ve
scheme
for
GPs
since
2008/09
(but
only
rolled
forward
annually)
• Extending
to
14-­‐17
year-­‐olds
• Now
supposed
to
be
accompanied
by
clear
Health
Ac7on
Plans

17. Health
checks:
Systema7c
review
(Robertson
et
al.,
2014)

18. 50%
40%
30%
20%
10%
0%
250,000
200,000
150,000
100,000
50,000
0
Trends in numbers and
coverage (Glover, 2014)
2008/9 2009/10 2010/11
(revised)
2011/12
(revised)
2012/13 2013/14
Had check On GP register Coverage by QOF
Learning Disability Health Checks 2013/14
Es7mated

19. Overall health check coverage
by CCG, grouped by Area Team
90%
80%
70%
60%
50%
40%
30%
20%
10%
0%
Learning Disability Health Checks 2013/14

20. Percentage of people
getting health checks
44
people
had
a
LD
health
check
Learning Disability Health Checks 2013/14
27
people
have
a
GP
who
doesn’t
appear
to
do
LD
health
checks
29
people
missed
their
LD
health
check

21. Proportion of practices
participating by CCG, grouped by
Area Team
100%
90%
80%
70%
60%
50%
40%
30%
20%
10%
0%
Learning Disability Health Checks 2013/14

22. Evidence
to
idea
to
policy:
Some
things
I’ve
been
involved
in
Medical
Model
Economic
Case
Posi0ve
Alterna0ve
Broad
Coali0on
Fits
Into
Exis0ng
Structures
‘Successful’
Annual
health
checks?
Yes
Less
health
service
spend
(in
long
run)
Annual
health
checks
Yes
Within
primary
care
‘Flexed’
Personal
budgets?
No
–
but…
BeMer
outcomes
at
no
extra
cost
Personal
budgets
Yes
No
–
but…
‘Cri7cal’
Health
inequali7es
No
–
social
model
Not
made
Not
ar7culated/
agreed
Beginning
to
form?
Cuts
across
govt
structures
-­‐
societal
‘Charisma7c’
LB
Bill?
No!
Trying
to
build
argument
for
no
extra
cost
LB
Bill
Forming
No
–
legal
underpinning

23. Flexed?
Personal
budgets
• Ini7ally
presented
as
‘charisma7c’
radical
overturning
of
rela7onship
between
person
and
state,
with
clear
posi7ve
proposal
• Small-­‐scale
work
overtaken
by
very
rapid
na7onal
policy
adop7on
and
expansion
• Varia7on
across
country
in
extent
to
which
personal
budgets
are
being
co-­‐opted
into
exis7ng
ins7tu7onalised
structures

24. Flexed?
Personal
budgets
• 544
people
with
learning
disabili7es
(out
of
2,679
people)
• General
posi7ve
impact
reported,
but:
– Posi7ve
impacts
in
some
domains
more
than
others
(paid
work)
– Big
geographical
varia7ons
– Aspects
of
process
made
really
difficult
• Posi7ve
impact
more
likely
when:
– Whole
process
made
easier
– Views
included
in
planning
(including
budget
seung)
– Budget
spent
on
community/leisure
and
PAs

25. People
with
learning
disabili7es:
Different
types
of
budget
(Ha:on,
2014)

26. People
with
learning
disabili7es:
Geographical
varia7on
(Ha:on,
2014)
10
115
210
0
25
55
5
35
80
0
10
40
250
200
150
100
50
0
Number
of
working
age
adults
with
learning
disabili0es
per
100,000
popn
Working
age
adults
with
learning
disabili0es
geRng
a
direct
payment
(DP)
/
self-­‐directed
support
(SDS):
boMom
10%
of
LAs
vs
England
total
vs
top
10%
of
LAs

27. Evidence
to
idea
to
policy:
Some
things
I’ve
been
involved
in
Medical
Model
Economic
Case
Posi0ve
Alterna0ve
Broad
Coali0on
Fits
Into
Exis0ng
Structures
‘Successful’
Annual
health
checks?
Yes
Less
health
service
spend
(in
long
run)
Annual
health
checks
Yes
Within
primary
care
‘Flexed’
Personal
budgets?
No
–
but…
Be:er
outcomes
at
no
extra
cost
Personal
budgets
Yes
No
–
but…
‘Cri0cal’
Health
inequali0es
No
–
social
model
Not
made
Not
ar0culated/
agreed
Beginning
to
form?
Cuts
across
govt
structures
-­‐
societal
‘Charisma7c’
LB
Bill?
No!
Trying
to
build
argument
for
no
extra
cost
LB
Bill
Forming
No
–
legal
underpinning

28. Cri7cal?
(Social
determinants
of)
health
inequali7es
• Increasing
recogni7on
of
health
inequali7es
experienced
by
people
with
learning
disabili7es
• Posi7ve
proposals
and
policy
solu7ons
focused
on
improving
access
to
health
services
• Broader
social
determinants
(discrimina7on,
poverty,
employment,
housing,
ci7zenship)
not
being
effec7vely
addressed

29. Why?
• Bad
things
(all
of
which
make
people
ill)
are
more
likely
happen
to
people
with
learning
disabili7es
• Being
poor
as
a
child
• Bullied
and
abused
• Excluded
and
isolated
• Being
poor
and
unemployed
as
an
adult
• Poor
health
care

30. Neighbourhood
(Emerson
et
al,
in
press)
100%
90%
80%
70%
60%
50%
40%
30%
20%
10%
0%
Neighbourhood
quality:
high
Neighbourhood
quality:
medium
Neighbourhood
quality:
low
Crime
not
a
big
worry
Feel
safe
outside
in
dark
Can
access
local
services
when
needed
ID
(n=279)
No
ID
(n=22,927)

31. Civic
and
social
par7cipa7on
(Emerson
et
al.,
in
press)
100%
90%
80%
70%
60%
50%
40%
30%
20%
10%
0%
Member
of
civic
org
Employed
16+
hrs
per
week
Easy
to
visit
family
2+
close
friends
Goes
out
socially
ID
(n=279)
No
ID
(n=22,927)

32. Evidence
to
idea
to
policy:
Some
things
I’ve
been
involved
in
Medical
Model
Economic
Case
Posi0ve
Alterna0ve
Broad
Coali0on
Fits
Into
Exis0ng
Structures
‘Successful’
Annual
health
checks?
Yes
Less
health
service
spend
(in
long
run)
Annual
health
checks
Yes
Within
primary
care
‘Flexed’
Personal
budgets?
No
–
but…
Be:er
outcomes
at
no
extra
cost
Personal
budgets
Yes
No
–
but…
‘Cri7cal’
Health
inequali7es
No
–
social
model
Not
made
Not
ar7culated/
agreed
Beginning
to
form?
Cuts
across
govt
structures
-­‐
societal
‘Charisma0c’
LB
Bill?
No
–
social
model
Building
argument
for
no
extra
cost
LB
Bill
Forming
No
–
legal
underpinning

33. Charisma7c?
Jus7ceforLB
and
the
LBBill
• Connor
Sparrowhawk
(aka
‘Laughing
Boy’
or
‘LB’)
–
see
his
mother
Sara
Ryan’s
blog
here
h:p://myda^life.wordpress.com/
• Teenager
with
mul7ple
labels
&
epilepsy
• Coming
to
end
of
educa7on,
adult
social
services
not
offering
suitable
support
• Increasing
distress
and
‘behaviour
that
challenges’

34. Charisma7c?
Jus7ceforLB
and
the
LBBill
• Placed
in
a
specialist
NHS
learning
disability
‘Assessment
and
Treatment
Unit’
• A^er
107
days
in
unit,
Connor
found
by
staff
unconscious
in
bath
and
he
died
• Independent
inves7ga7on
report
found
Connor’s
death
to
be
‘preventable’
–
lack
of
staff
recogni7on
of
his
seizures
in
the
unit,
Connor
was
on
15-­‐minute
observa7on
rou7ne
from
staff
while
in
the
bath
(10
minutes
at
other
7mes)

35. Charisma7c?
Jus7ceforLB
and
the
LBBill
• A^er
the
publica7on
of
the
independent
report,
growing
support
for
LB
and
his
family
• Star7ng
off
by
using
social
media,
the
#jus7ceforLB
campaign
was
born
– All
volunteers
contribu7ng
in
any
way
they
want
to
– To
fundraise
for
LB’s
family’s
legal
costs
and
to
gain
#jus7ceforLB
– And
emerging
from
this,
a
dra^
#LBBill
h:ps://lbbill.wordpress.com/

36. Charisma7c?
The
(dra^)
LBBill
• A
BILL
TO:
• require
due
regard
by
public
bodies
to
the
need
for
disabled
people
to
be
included
in
the
community
• require
public
bodies
not
to
take
residen7al
care
into
account
when
determining
ques7ons
in
rela7on
to
community
support
for
disabled
people
• require
local
authori7es
and
NHS
bodies
to
secure
a
sufficient
level
of
community
support
for
disabled
people
• ensure
disabled
people
benefit
from
the
most
appropriate
living
arrangement
for
them

37. Charisma7c?
The
(dra^)
LBBill
• A
BILL
TO:
• require
residen7al
living
arrangements
for
disabled
people
to
be
given
approval
• require
repor7ng
on
residen7al
living
arrangements
made
for
disabled
people
• amend
the
Mental
Capacity
Act
2005
to
safeguard
the
rights
of
disabled
people
and
families
• remove
people
with
learning
disabili7es
and
au7sm
spectrum
condi7ons
from
the
scope
of
the
Mental
Health
Act
1983

38. My
involvement?
• Personal,
not
professional
• Starts
from
emo7onal
connec7on,
not
from
‘ra7onal’
assessment
of
research
priori7es
• As
one
of
very
diverse
coali7on,
with
clear
aim
(no
privileged
exper7se)
• Not
research
(as
my
employer
would
see
it)
• Not
part
of
the
day
job
• And
yet
–
all
the
above
are
false
binaries
that
are
blurred
–
what
mo7vated
me
to
do
the
‘day
job’
in
the
first
place?

39. Research
to
ideas
to
policy
(to
prac7ce?):
My
experience
• Ideas
trump
evidence
• Ins7tu7onalised
ideas
exert
very
powerful
(and
largely
invisible)
force
• Forming
effec7ve
coali7ons
is
crucial
• Even
if
these
line
up
to
change
policy,
the
gap
from
policy
to
the
daily
lives
of
people
with
learning
disabili7es
is
huge
• Is
this
gap
always
an
implementa7on
problem,
or
illustra7ng
something
more
fundamental?
• Waddington
epigene7c
landscape

40. Research/academia
–
the
view
from
outside?
(Peter
Duggan)

41. Ins7tu7onalised
limita7ons
of
learning
disabili7es
research:
Who?
• Ins7tu7onally
defined
popula7ons
• Others
usually
decide
who
counts
as
a
person
with
‘learning
disabili7es’
• Service
structures
(and
gatekeeping
within
them)
decide
who
researchers
might
get
access
to
• ‘Capacity’
o^en
used
by
others
to
restrict
research
access
• Who
volunteers
to
take
part?
200,000
180,000
160,000
140,000
120,000
100,000
80,000
60,000
40,000
20,000
0
MLD
SLD
PMLD

42. The
popula7on(s)
of
people
with
learning
disabili7es
(Emerson
&
Glover,
2013)
Emerson
&
Glover
(2013)

43. Ins7tu7onalised
limita7ons
of
learning
disabili7es
research:
New?
• O^en
focused
on
the
‘new’,
innova7on
• Less
on
the
‘old’
–
what’s
happening
for
most
people
with
learning
disabili7es
• Focus
on
disrup7ons
(‘new
paradigms’)
rather
than
con7nui7es
in
people’s
experience
over
7me
• Less
on
how
‘innova7ons’
fare
over
7me
(scaling
up?
falling
by
the
wayside?
morphing?)
I stood on a hill and I
saw the Old
approaching, but it
came as the New.
It hobbled up on new
crutches which no one
had ever seen before
And stank of new smells
of decay which no one
had ever smelt before.
Bertolt Brecht (Parade
of the Old New)

44. The
shock
of
the
old
(David
Edgerton)
Understanding
“technology
in
use”,
not
“technology
by
inven7on”
“Most
change
is
taking
place
by
the
transfer
of
techniques
from
place
to
place”
“Imita7ng
is
seen
as
a
much
less
worthy
ac7vity
than
innova7ng”

45. Technology
by
inven7on
vs
technology
in
use
• Strong
evidence
for
effec7veness
of
supported
employment…
– but
6.8%
of
adults
with
learning
disabili7es
are
in
any
form
of
paid
employment
• Strong
evidence
for
suppor7ng
people
with
learning
disabili7es
and
challenging
behaviour
in
individualised
community
seungs
– But
3,000ish
people
are
in
specialist
inpa7ent
seungs
• 68%
given
an7psycho7cs
in
past
28
days
• High
levels
of
self-­‐harm,
accidents,
physical
assault,
hands-­‐on
restraint
and
seclusion

46. The
shock
of
the
old
(David
Edgerton)
“The
twen7eth
century
was
awash
with
inven7ons
and
innova7ons,
so
that
most
had
to
fail.
Recognising
this
will
have
a
libera7ng
effect.
We
need
no
longer
worry
about
being
resistant
to
innova7on,
or
being
behind
the
7mes,
when
we
choose
not
to
take
up
an
inven7on.
Living
in
an
inven7ve
age
requires
us
to
reject
the
majority
that
are
on
offer.”

47. Ins7tu7onalised
limita7ons
of
learning
disabili7es
research:
Knowledge
Working
within
academic
ins7tu7onal
constraints
• Ins7tu7onal
preference
for
‘high
value’
research
income
• REF
emphasis
on
‘high
impact,
interna7onal’
publica7ons
• REF
linear
view
of
‘research
impact’
• Constraints
on
what
counts
as
‘evidence’,
and
therefore
what’s
admissible
for
‘knowledge
transfer’
and
‘knowledge
exchange’
• Cartoon:
Frita
Ablefeldt

48. What
counts
as
‘knowledge’?
Science
as
exclusionary
prac7ce
• Con7nuing
effort
to
dis7nguish/privilege
scien7fic
knowledge
from
other
forms
of
knowledge
• Method
• But
also
prac7ce
(and
prac77oners)
• From
quickmemes

49. Science
as
exclusionary
prac7ce
• “Experience
suitable
for
philosophical
inference
had
to
emerge
from
those
sorts
of
people
fit
reliably
and
sincerely
to
have
it,
to
report
it,
or,
if
it
was
not
their
own,
to
evaluate
others’
reports
of
experience.
Undisciplined
experience
was
of
no
use.”
(Steven
Shapin)
• John
Wilkins:
“You
may
as
soon
persuade
some
country
peasant
that
the
moon
is
made
of
green
cheese,
(as
we
say)
as
that
it
is
bigger
than
his
cart-­‐wheel,
since
both
seem
equally
to
contradict
his
sight,
and
he
has
not
reason
enough
to
lead
him
farther
than
his
senses.”

50. Science
as
exclusionary
prac7ce
• ‘Gentlemanly’
codes
of
scien7fic
conduct
• The
paradox
that
scien7fic
‘evidence’
can
only
make
a
valuable
contribu7on
to
society
to
the
extent
that
it
is
seen
as
“objec7ve
and
disinterested”,
and
‘’not
produced
and
evaluated
to
further
par7cular
human
interests”
(Steven
Shapin)
• …and
yet
scien7fic
research
explicitly
moulded
by
the
state
to
be
‘useful’

51. Evidence
vs
experience:
Applied
Behaviour
Analysis
(among
many!)
• “But
you
don’t
properly
understand
ABA”
• “But
ABA
is
evidence-­‐based”
• “But
what
you
experienced
isn’t
real
ABA”
• “But
that
bad
stuff
isn’t
real
ABA,
even
though
its
prac77oners
say
it
is”
• “But
you
would
say
that,
wouldn’t
you?”

52. Evidence
and
experience
• ‘Disinterested
and
objec7ve’
research
a
rhetorical
con-­‐trick?
• Can
argue
that
data
is
exactly
the
plural
of
anecdote
• Anecdote
a
pejora7ve
term
for
experience?
• ‘Evidence’
in
learning
disabili7es
research
limited
in
all
sorts
of
ways
• Experience
(like
the
experience
of
LB
and
his
family)
can
tell
us
vital
things
about
reali7es
that
research
does
not
• There
is
more
than
one
route
to
‘knowledge’
–
they
all
need
to
be
respected

53. What
to
do?
Learning
disabili7es
research
• Who
are
we
missing
out?
• More
on
the
‘old’
rather
than
always
chasing
the
‘new’
• What’s
happening
for
most
people,
and
why?
• More
expansive
view
of
knowledge
• Humility
• Nothing
About
Us
Without
Us?

54. What
to
do?
Ideas
to
policy
(and
prac7ce)
• Clarity
about
what
you’re
trying
to
achieve
–
what’s
the
idea
&
where
does
your
research
fit?
• What
are
you
prepared
to
‘flex’
to
accommodate
to
ins7tu7onalised
ideas
(medical
model?
economic
case?)
• What
posi7ve
alterna7ve
can
you
construct,
to
operate
within
which
structures?
• What
coali7on
is
needed?
– Power
– Who,
how,
why?
– Clarity
about
terms
of
engagement/mutual
respect
– Evidence
may
not
be
the
most
important
element
– Need
to
respect
other
forms
of
knowledge

55. What
to
do?
Charisma7c
change?
• What
are
our
hypotheses
about
why
good
stuff
doesn’t
happen
rou7nely
and
really
bad
stuff
does
happen?
– Money/resources?
– Not
knowing
the
best
way
to
support
people?
– Resistant
service
cultures?
– Staff
with
poor
training/knowledge?
– Lack
of
legal
protec7on?
– Discrimina7on?
– Lack
of
human
rights?
– Social
posi7on
of
people
with
learning
disabili7es
in
society?
• Depending
on
our
hypothesis,
will
we
need
to
pitch
for
charisma7c
change?

56. Social
media,
Jus7ceforLB
and
me
• Feel
connected
to
a
much
broader
range
of
people
–
no
hierarchies
• Feel
much
be:er
informed
• Uncomfortable
isn’t
always
bad!
• Checking
my
privilege
• Gets
evidence
into
more
places
where
it
can
be
useful…
• …but
puts
‘evidence’
in
its
place
• Rekindled
my
sense
of
purpose

57. Hannah
Arendt
(via
Sara
Ryan)
“Imagina7on
alone
enables
us
to
see
things
in
their
proper
perspec7ve,
to
be
strong
enough
to
put
that
which
is
too
close
at
a
certain
distance
so
that
we
can
see
and
understand
it
without
prejudice,
to
be
generous
enough
to
bridge
abyss
of
remoteness
un7l
we
can
see
and
understand
everything
that
is
too
far
away
from
us
as
though
it
were
our
own
affair.”

58. Hannah
Arendt
(via
Sara
Ryan)
“Imagina7on
alone
enables
us
to
see
things
in
their
proper
perspec7ve,
to
be
strong
enough
to
put
that
which
is
too
close
at
a
certain
distance
so
that
we
can
see
and
understand
it
without
prejudice,
to
be
generous
enough
to
bridge
abyss
of
remoteness
un7l
we
can
see
and
understand
everything
that
is
too
far
away
from
us
as
though
it
were
our
own
affair.”

59. Hannah
Arendt
(via
Sara
Ryan)
“Imagina7on
alone
enables
us
to
see
things
in
their
proper
perspec7ve,
to
be
strong
enough
to
put
that
which
is
too
close
at
a
certain
distance
so
that
we
can
see
and
understand
it
without
prejudice,
to
be
generous
enough
to
bridge
abyss
of
remoteness
un7l
we
can
see
and
understand
everything
that
is
too
far
away
from
us
as
though
it
were
our
own
affair.”

60. Thank
you!