We know that people with learning disabilities in England
(and in other countries around the world) die, on average, some 15 to 20 years
younger than people without learning disabilities. We know that people with
learning disabilities are more likely to experience a wide range of health
problems than other people, are more likely to experience
multiple health problems, are more likely to be prescribed antipsychotics and multiple
medications, and are more likely to go to emergency hospital departments with
health problems that, if well managed, shouldn’t need emergency hospital care.
We also know that people with learning disabilities are more
likely than other people to be overweight or obese, and that this difference
emerges in childhood. We know that people with learning disabilities are less
likely than other people to live healthy lifestyles in terms of things like
diet and physical activity. The ‘hidden majority’ of adults with learning
disabilities are more likely to drink alcohol and smoke compared to other
people, probably starting in the teenage years.
We know that people with learning disabilities throughout
their lives are more likely to experience a whole range of adversities that are
linked to poor health: poverty, hardship, poor housing, unemployment,
discrimination, crime, social isolation, restricted social and intimate
relationships, and a wide range of adverse life events.
The poorer health and early death of so many people with
learning disabilities is not inevitable. A learning disability is not in itself
a health condition. Much of the difference in health between people with and
without learning disabilities can be accounted for by the greater adversities experienced
by people with learning disabilities. This (along with poorer treatment by
health services) is what makes the poorer health experienced by people with
learning disabilities a health inequity, an example of “differences in health that are unnecessary, avoidable, unfair and
unjust” (Whitehead, 1992).
Services that
support people with learning disabilities, particularly residential and housing
social care services but other services too, are really important in the lives
of those people with learning disabilities that can get access to them. How
they support people is going to have a massive influence on people’s health.
So, from the evidence in front of us, why don’t social care
services do all they can to support people to live healthy lives, with
reasonably healthy diets and a reasonably active and fun life?
There are many
potential reasons for this, but in this blog I want to talk about one reason
often given by professionals and support staff to justify unhealthy lifestyles
on the part of the people they’re supporting, choice. The argument is
straightforward – like anyone else, people with learning disabilities have the
right to choose the food they eat, the drinks they drink, and what they do (or
don’t do) with their time. The role of services is not to constraint people’s
right to choose.
Given that the
Mental Capacity Act legally enshrines the right of people with capacity to make
unwise decisions, are attempts to address the unhealthy lifestyles of people
with learning disabilities inevitably in conflict with this right? In this blog
I’m going to try and argue no.
First, staff appeals
to the right to choose unhealthy lifestyles sit quite oddly with what many
services routinely do. Staff in residential and housing support services
routinely constrain people’s right to choose in many other areas of their
lives, either explicitly via risk assessments or implicitly via staff rotas
that constrain where, when (or if?) people go out, whether people ever have
sex, or whether they can attend a place of worship if they choose. Services
don’t seem concerned that they impose restrictions on other unhealthy
behaviours: people with learning disabilities in residential services are less
likely to drink alcohol or smoke tobacco, for example. Why is the right to sit
on the sofa and eat doughnuts sacrosanct in the face of such routine
constriction in other areas of people’s lives?
Second, appeals to
choice are typically made to justify someone’s choice to engage in unhealthy
behaviour. I don’t know I’ve ever heard this appeal to choice used to justify a
person’s choice to engage in healthy behaviour. What if someone was watching
the London Marathon on TV and expressed the choice that they wanted to take up
running? Would this expression of choice be heard, followed up and supported as
a fundamental priority? Choice (particularly from a piffling range of unhealthy options) is not self-determination - being more in control of the options available.
Third, appeals to
choice assume that a person’s choices at a particular time and place are
somehow ‘natural’, and that trying to change anything with the possible
consequence of improving a person’s lifestyle is imposing artificial
constraints on these ‘natural’ choices. An obvious point is that no-one, ever,
is making choices within a free-floating void of infinite possibilities.
People’s life histories up to that point, who is around the person, where
people live, how much money they have at their disposal, their health (and the
medication they are taking), and the weight of routines (among many other
things) all have an influence on the bandwidth of options that are seen as possible,
which among these options are seen as desirable, and which (if any) of these
options actually happen.
What is the
bandwidth within which many people with learning disabilities are likely to be
making choices about health behaviours such as diet and physical activity? Some
questions (and this is no means an exhaustive list):
·
What
are people’s life histories when it comes to health and healthy behaviours?
What did people grow up with in terms of what they tended to eat, and what they
saw and were encouraged (or discouraged) to do in terms of physical activity,
for example?
·
What is
available to eat and drink where people are living? (money is obviously a big
factor here) Do people have the chance to try different things? What skills do
people (and those supporting them) have in terms of preparing fresh food and
drinks? What do people see those around them eating and drinking (and smoking?)?
·
What
options do people think they are choosing from?
·
Are
people confident in their ability to follow through on a choice they want to
make?
·
What
support are people getting to actually do physical activities that they might
find fun? (no matter where people are starting from)
·
Are people
on medications that make a difference to their physical health risks (for
example antipsychotics and weight gain) or their capacity to make decisions
(again, antipsychotics)?
·
What
histories do people have of being bullied or discriminated against, and does a
(often very real and present) fear of further discrimination have an impact on
what people are prepared to do (and where they’re prepared to do it)?
·
How
much money do people have at their disposal? How much money does the service
have at its disposal?
·
Where
are people living? Where are the nearest shops and what kind of food and drink
do they sell? Are shops selling fresh food accessible? How do people get to the
shops? Or is food delivered to the door via internet shopping? Who gets to
decide which food and drink is bought?
·
Are
local neighbourhoods seen as hostile? Are they pleasant, attractive places to
be in?
·
What
are different ways that people can imagine to be physically active in a way
they might enjoy, and do people have the gear (clothing? footwear?), places and
people to do these activities?
·
How do
people get around beyond their house? By car? Public transport? Walking?
Cycling?
·
What
‘activities’ are part of the routine, and are activities beyond the routine
encouraged and supported? Does a trip in the car for a treat at McDonalds or
the local Costa café (with a ‘treat’ of a cake every time) count as an
activity?
I know in my life
all these have been crucial in shaping my health and the choices I make (in
some ways healthy, in other ways unhealthy). I have a lot of control over these
choices, but my life history (for example my parents aren’t smokers or big
drinkers, but they are overweight and like cakes a little too much), my
circumstances (do I have the time to cook tea from scratch or not, or am I late
home from work with the kids off to do stuff in the evening) and where I live
(in the Lake District, where a beautiful, safe walk is easy to get to, but I’m
the token slob in a group of friends that tends towards lycra-clad extremities
of exercise) all have an enduring, daily impact on the choices I make.
For me, the appeal
to choice to justify unhealthy lifestyles is incoherent and largely specious.
The ‘choices’ people are making are often heavily constrained to a very narrow
bandwidth, in environments that come down heavily on the side of unhealthy
behaviours in ways that make more healthy behaviours not only difficult but not
even imaginable. Taking people’s health seriously doesn’t involve restricting
choice. If anything it involves the opposite: supporting people to grow in the
exercise of their self-determination, in environments that support people to
try new things and take control of their lives. People still have the right to
make unwise decisions in relation to their health, of course, but in a broad
bandwidth of possibilities these decisions allow for people to (sometimes)
choose health, rather than in effect having poor health chosen for them.
Reference
Whitehead M. (1992). The concepts and principles
of equity in health. International Journal of Health
Services 22; 429–445.