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How 
does 
research 
have 
an 
impact 
on 
the 
daily 
lives 
of 
people 
with 
learning 
disabili7es? 
Sea:le 
Club 
Conference 
2014 
Chris 
Ha:on
How 
does 
research 
have 
an 
impact 
on 
the 
daily 
lives 
of 
people 
with 
learning 
disabili7es? 
Sea:le 
Club 
Conference 
2014 
Chris 
Ha:on
Twee7ng? 
#sclub14 
@chrisha:oncedr 
@ihal_talk
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?
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
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”
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’”
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.”
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)”
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”
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
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
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)
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’ 
? 
? 
? 
? 
?
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
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
Health 
checks: 
Systema7c 
review 
(Robertson 
et 
al., 
2014)
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
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
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
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
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
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
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
People 
with 
learning 
disabili7es: 
Different 
types 
of 
budget 
(Ha:on, 
2014)
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
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
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
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
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)
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)
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
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’
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)
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/
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
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
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?
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
Research/academia 
– 
the 
view 
from 
outside? 
(Peter 
Duggan)
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
The 
popula7on(s) 
of 
people 
with 
learning 
disabili7es 
(Emerson 
& 
Glover, 
2013) 
Emerson 
& 
Glover 
(2013)
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)
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”
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
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.”
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
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
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.”
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’
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?”
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
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?
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
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?
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
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.”
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.”
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.”
Thank 
you!

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Chris Hatton Keynote - Seattle Club Conference 2014

  • 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
  • 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.”