PTMF Pattern ID Identity

Related Provisional General Pattern: ‘Identities’, and its sub-

patterns; and Pattern: ‘Surviving a highly unequal society’

This pattern has been developed to support thinking about the impact of being identified as having
an intellectual disability. It particularly relates to those who might be labelled with a ‘mild’
intellectual disability, who may be more acutely be aware of the devalued position those regarded
as intellectually disabled hold within westernised societies. While informed by evidence and clinical
practice, it is important to emphasise that this provisional pattern has not been developed alongside
people labelled with an intellectual disability. It is important that future work explores the fit
between this pattern and the narratives developed with people accessing intellectual disability
services. As with all other patterns, issues of intersectionality will be relevant, and this pattern has
been authored within a UK cultural context.

Narrative summary
Labels and definitions of ‘intellectual disability’ have varied, and will continue to vary, across time
and between cultures. Deficits in intellectual and social and adaptive abilities are assessed in order
to assign a diagnosis using criteria that are dominant in the Global North. Although these ‘abilities’
are typically regarded as existing on a spectrum, the assignment of a diagnosis places a person in a
qualitatively different category to those regarded as having ‘normal’ abilities.
While there is much evidence linking the prevalence of diagnosis of intellectual disability to
biological aetiological factors (e.g. specific genetic syndromes; lack of oxygen during delivery), the
role of social factors (e.g. lack of access to appropriate education, effects of childhood abuse or
bullying) can be less well recognised within society. Ideological power operates through the
dominance of medical model understandings of disability that serve to locate difficulties within the
person with an intellectual disability; transmitting assumptions that the person’s brain does not
operate in the same way as that of a ‘normal’ person. This in turn renders social model
understandings of disability less accessible within society. Social models of disability conceptualise
disablement as an interaction between bodies (biological/embodied power) and various operations
of social and material power. For example, while a person might have difficulties reading or writing
due to a biological impairment (biological/embodied power), they are disabled by inadequate
educational support and by social structures that, for example, do not provide sufficient support to
navigate and complete paperwork gain access to welfare benefits (here, ‘disabled’ is used as a verb,
something done to a person).

The dominance of medical understandings of disability intersects with other cultural discourses,
including current neoliberal discourses, to result in people diagnosed with ID being devalued. This in
turn limits their access to other forms of power that would support them in meeting their core
human needs. The continued focus on individual deficits serves to mask the effects of a highly
unequal society that is structured around distribution of resources based upon a person’s ability to
contribute to an unsustainable economy. At the same time, ‘personal tragedy’ discourses of
disability complement the position that people with intellectual disabilities should be grateful
recipients of charity, benefits, basic housing and rationed care provision. As a result, people with
intellectual disabilities are far more likely to be living in poverty meaning they do not have financial
resources to alleviate distress or purchase clothes/material goods that support them in enacting
valued social identities. The devalued position of people with intellectual disabilities within society,
sometimes coupled with difficulties making sense of and responding to social cues, results in

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individuals having reduced social capital, including the resources to secure positive romantic
relationships. All of this in turn results in them being more likely to be victims of abuse, though again
ideological power operates to construct the person with ID as ‘vulnerable’ in ways that mask the
links to oppression and inequity.

The assessment and monitoring of people with intellectual disabilities, while typically carried out
with benign, protective intentions, serves to further mask widely held assumptions about ‘normal’
human behaviour. ‘Independence’, for example, is highly valued and may be held out as the ideal
for people with intellectual disabilities in ways that conceal the interdependence of all humans and
position the need for support as a further indication of individual deficit. Similarly, while the
importance of making choices is championed in intellectual disability policy, the focus on assessing
individual decision-making abilities neglects the fact that many decisions (e.g. regarding sexual
relationships) are usually made interpersonally.

The marginalisation of people with intellectual disabilities and continued focus on deficits without
attention to social contexts often results in people stigmatised by this label coming to experience
themselves as defective and undeserving. The relatively poorer cognitive abilities of this group,
coupled with limited social and material resources, likely acts as a further barrier to awareness of
the impact of ideological power and the opportunities to take collective action. However, some
people with intellectual disabilities have become involved in advocacy and have supported
recognition of social model understandings of disablement.

Power, threat, meaning and threat responses within the pattern

Power
Biological/embodied: Whatever the causal factors may be, people with the ‘intellectual disability’
label will have poorer cognitive abilities than the majority of people without the label. This means
that navigating day-to-day tasks and demands that others might find mundane will often be beyond
a person’s problem solving abilities, or will be stressful when appropriate support is not provided.
Someone may struggle to recognise or know how to respond appropriately to social cues, which in
turn can result in increased stress and problems for them. Frequent experiences of stress and
hyperarousal can have a harmful impact on the body. This, and the fact that people with ID
diagnoses are more likely to have other bodily problems, means that people with this label are likely
to have poorer physical health. Discrimination within health services and failure to recognise
symptoms or communications of pain result in inequitable access to healthcare and contribute
towards the shortened life expectancy of people with ID diagnoses. Embodied problem-solving
abilities will also be impacted by the over-prescription of psychiatric drugs such as tranquilisers,
often given in response to ‘challenging behaviour’. People with ID can be at heightened risk for early
onset dementia. Some people may have appearances that differ from what a given society regards
as ‘typical’ or attractive leading to negative reactions from others. Women and girls may be
particularly disadvantaged here if they do not carry out the extensive work involved in maintaining a
stereotyped feminine appearance. Reactions and expectations from others will also be influenced
by racial discourses associated with a person’s skin colour. Some people may have sensory profiles
such that they experience certain stimuli (e.g. visual, auditory etc.) in ways that are stressful or
overwhelming.

Legal: People with ID diagnoses are more likely to be subject to legal restrictions such as Deprivation
of Liberty Safeguards in the UK, or having best interests decisions made on their behalf when
assessed as lacking capacity to make certain decisions. People with ID diagnoses are impacted by
laws relating to welfare provision and mental health systems. They may experience coercion from

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more powerful others to take part in illegal activities. Some people with ID diagnoses may lack
understanding of what is illegal.

Coercive: People with ID diagnoses are more likely to be victims of all forms of abuse because
abusers target people who are less likely to be believed and who have less power to resist. They are
more likely to experience seclusion, physical and/or medical restraint. People can be coerced to take
part in assessments of abilities, sometimes in contexts in which the results of the assessment will
have a profound impact upon their life. People may also experience numerous instances of ‘micro-
coercions’ by carers hurrying them to complete tasks such as household chores or attending to
personal hygiene. This encouragement will often be well-meaning, but a lack of staff resources can
mean this can often be done in a way in which a person feels pressurised and there is little
opportunity for them say ‘no’.

Relational/interpersonal: People with ID diagnoses may lack the knowledge of what forms of
interaction are valued within a given social context and often lack opportunities to form meaningful
relationships. People around them may not be well cued into the person’s communication needs.
They often have limited power to choose when they meet with friends or family. They are often
highly isolated or living with people they did not choose to live with. Many people they relate to will
be paid staff, with whom they will have limited power over when and how they can interact (e.g.
staff will go off shift; staff may need to attend to another person; staff members leave). Many
people experience hate crime or bullying and may not feel safe in the communities in which they
live.

Economic/material: Opportunities for paid employment are extremely scarce and if work is available
people will often only receive minimum wage. People with ID diagnoses are more likely to live in
poverty, may be housed in relatively deprived areas with higher crime rates and less access to green
space, and tend to have less access to personal transport, services, leisure pursuits or possessions
that can entertain or support them to ‘fit in’.

Social Capital: People with intellectual disabilities rarely have valued academic or vocational
qualifications. Few have occupations valued by society. They may have little direct access to helpful
sources of information about themselves and their situation. They are less likely to have access to
valued resources that help them to form friendships or romantic/sexual relationships.

Ideological: People with ID diagnoses are impacted by discourses noted above that locate difficulties
within the person. Their accounts of events, including of discrimination or abuse, may be seen as
unreliable, making legal proceedings against alleged perpetrators less successful. Difficulties
navigating the demands of a complex intellectual and social world are located within the person,
making it more likely the person and others come to accept their devalued position in society. The
dominance of ‘challenging behaviour’ discourses means that particular ways of responding are often
seen as ‘symptoms’ of disability, often making it harder to recognise the needs a person might be
trying to meet. Stereotypes associated with associated diagnoses can similarly influence the way
individuals are perceived and come to perceive themselves (e.g. ‘it’s his autism that made him lash
out’, as opposed to ‘he was angry because of the way he was spoken to’). Neoliberal ideologies
privileging economic productivity can reinforce a devalued identity for those whose skills do not fit
the demands of the labour market. Other aspects of a person’s identity that do not fit with dominant
social norms may also be disregarded (e.g. it can be harder for people to enact identities such as gay,
queer or non-binary).

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Threat
Threats to identity associated with the ongoing negative operation of power thus include a sense of
being devalued (often throughout a person’s life). These threats are compounded by rejection from
others, isolation, and experiences of bullying and victimisation. A person’s awareness that they do
not have the same intellectual and social abilities as others around them, and that they are unable to
adopt socially valued identities, results in threats to identity and reduced opportunity to secure
relationships and a valued place within society. Threats to physical health stem from experiences of
chronic stress and hyperarousal, accompanying physical health conditions, harmful effects of
overmedication, and inequitable access to healthcare.

Meaning
Meanings commonly associated with these threats include: abnormal/defective; undeserving;
unlovable; unsafe; abandoned/rejected; controlled; isolated and lonely; bad/dangerous;
contaminated/evil; shamed/humiliated; and failed/inferior.

Threat responses
The threats and associated meanings give rise to threat responses that are mediated by the body.
Threat responses are conceived of as fundamentally protective, as attempts to meet core human
needs under adverse circumstances. Disabling aspects of these responses can be reduced and
counteracted by other responses which draw on skills, strengths, material, relational and social
support, alternative narratives and other power resources. However, access to these resources are
often extremely limited for people with ID due to the cumulative and chronic impact of multiple
negative operations of power, coupled with people in this population typically being less able to
respond in more reflective ways.

Limited power to secure affection from others or to act in valued ways can result in threat responses
by the person that lead to further disempowerment by services (e.g. restrictive interventions such as
medication, withholding valued activities or objects) or further rejection and marginalisation (e.g.
the more someone exercises a limited range of strategies to get another person to like them, the
more frustrating the interactions can become for both). Overall, lack of access to economic and
relational power, coupled with relatively poorer problem solving abilities, limits the range of socially
acceptable responses available to people with ID.

In this context, threat responses are often used to serve the following functions:

Regulating overwhelming feelings – e.g. through screaming, head-banging/hitting, lashing out at

others, pica, ripping or repetitive interactions/preoccupation with objects, rocking, biting, seeking
comfort from carers, seeking escape from others, skin picking, dissociation, self-injury, memory
fragmentation, bingeing and purging, carrying out rituals, ‘high mood’, low mood, hearing voices,
use of alcohol or drugs, compulsive activity, overeating, denial, projection, splitting, derealisation,
somatic sensations, bodily numbing, seeking physical contact.

Protection from danger – e.g. through hypervigilance, insomnia, flashbacks, nightmares,

fight/flight/freeze, suspicious thoughts, isolation (including avoiding leaving home/bedroom),
maintaining proximity to someone they feel safer with, aggression, avoiding people that remind a
person of an abuser, or preference for working with women or men; avoidance of animals or
children/young people

Maintaining a sense of control - e.g. through self-starvation, rituals, violence, dominance in

relationships, asking repetitive questions to get a predictable response, changing the topic of

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conversation to one that feels safer, aggression or self-harm to stop something happening, repetitive
predictable interactions with an object

Seeking attachments – e.g. through idealisation of others, appeasement, seeking care and emotional
responses, use of sexuality (seeking sexual relationships for the purposes of being with someone),
giving money/goods to others so they will spend time with them, deferring to others for their
opinion, making up stories about themselves to try and keep others interested, following staff
members around, being indiscriminate with who they interact with on social media

Protection against attachment loss, hurt and abandonment – e.g. through rejection of others, acting
in ways that might force a placement breakdown when feeling a placement is unstable (less hurtful
to reject others than feel rejected), distrust, seeking care and emotional responses, submission, self-
blame, interpersonal violence, hoarding/collecting, appeasement, self-silencing, self-punishment,
responding ‘don’t know’ to questions for fear of giving an answer the other person will dislike,
avoiding offering their opinion, aggression towards others to support proximity to attachment figure
(to get a carer to be with them, or to ward off someone who might take their carer’s attention away
from them), self-harm to support proximity to attachment figure

Striving for a valued identity, self-image – e.g. through “unrealistic ideas” about the future or their
own support needs, rejecting the idea that they ‘have’ an ID, not wanting to be seen in ID services or
to associate with people who are seen to be disabled, ‘masking’/’cloak of competence’, unusual
beliefs, striving, dominance, hostility, aggression

Striving for a place within the social group – e.g. through appeasement, submission, self-silencing,
self-blame, mimicking, joining ‘gangs’ or other groups who may not have the person’s interests at
heart

Communication about distress, eliciting care – e.g. through self-injury, aggression, throwing or
hitting objects, snatching, screaming, unusual beliefs, voice hearing, self-starvation, ‘making up
stories’ (may feel safer to elicit needed care by creating a story that is not true, rather than to
express how vulnerable they feel)

Sensory regulation – e.g. through rocking, withdrawal, repetitive engagement with objects, banging,
screaming, seeking restraint or hugs, rejecting certain foods/textures, avoidance or seeking out of
certain stimuli

Strengths
That the ID diagnosis is based exclusively on deficits makes it harder to recognise individual’s many
strengths. As with every person, there will be many things that should be valued and admired. In
spite of enduring extreme oppression and marginalisation, people with intellectual disabilities find
ways to resist in their day-to-day lives and can be a source of great joy for all who make effort to
connect with them. Many people do not feel the same pressure to conform to neoliberal/socially-
constructed ideals and instead can take great pleasure in various leisure activities or interactions
with others.

REFERENCES and SOURCES

This pattern relates to the Provisional General Pattern ‘Identities’, see:

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Johnstone, L. & Boyle, M., Cromby, J., Dillon, J., Harper, D., Kinderman, P., Longden, E., Pilgrim, D. &
Read, J. (2018). The Power Threat Meaning Framework: Towards the identification of patterns in
emotional distress, unusual experiences and troubled or troubling behaviour as an alternative to
functional psychiatric diagnosis. British Psychological Society. (pp218-2 and 223)
[Link]
07/PTM%20Framework%20%28January%202018%29_0.pdf

This article describes adapting the PTMF for carers supporting people with ID diagnoses:
Collins, G., Fyson, R., Morgan, G., Runswick-Cole, K., & Steel, J. (2022). The Power Threat Meaning
Framework: Development of a document for use in intellectual disabilities services. Bulletin of the
FPID, 20(1), 4-11.

Example references on the social model of disability, which argue for making sense of disability in
terms of interactions between social structures and bodies:
Chappell, A.L., Goodley, D. and Lawthom, R. (2001), Making connections: the relevance of the social
model of disability for people with learning difficulties. British Journal of Learning Disabilities, 29,
45-50. [Link]

Goodley, D. (2001) 'Learning Difficulties', the Social Model of Disability and Impairment: Challenging
epistemologies, Disability & Society, (16)2, 207-231, DOI: 10.1080/09687590120035816

Goodley, D. (2016). Disability studies: An interdisciplinary introduction. Sage.

Oliver, M. & Barnes, C. (2012). The new politics of disablement. Palgrave Macmillan.

O’Reilly, M., Lester, J.N. (2017). Models of disability and the translation to psychiatric categories. In:
Examining mental health through social constructionism. The language of mental health. Palgrave
Macmillan. [Link]

Whitaker, S. (2013). Intellectual disability: An inability to cope with an intellectually demanding

world. Palgrave Macmillan.

Articles relevant for thinking about the impact of biological/embodied power:

Clegg, J. & Bigby, C. (2017). Debates about dedifferentiation: Twenty-first century thinking about
people with intellectual disabilities as distinct members of the disability group. Research and
Practice in Intellectual and Developmental Disabilities, 4(1), 80-97, DOI:
10.1080/23297018.2017.1309987

Kalsy-Lillico, S., Adams, D. & Oliver, C. (2012). Older adults with intellectual disabilities: Issues in
ageing and dementia. In: E. Emerson et al. (eds). Clinical psychology and people with intellectual
disabilities. Wiley.

Shakespeare, T. & Corker, M. (2002). Disability/postmodernity: Embodying disability theory.

Bloomsbury. (also relevant for social model understandings of disability)

Example references on increased risk of abuse and/or its impacts:

Clawson, R. & Fyson, R. (2017) Forced marriage of people with learning disabilities: a human rights
issue. Disability & Society, (32)6, 810-830, DOI: 10.1080/09687599.2017.1320271

Cottis, T. (2009). Intellectual disability, trauma and psychotherapy. Routledge.

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Marsland, D., Oakes, P. and Bright, N. (2015). It can still happen here: systemic risk factors that may
contribute to the continued abuse of people with intellectual disabilities. Tizard Learning Disability
Review,20(3), 134-146. [Link]

Withers, P. & Morris, J. (2012). Sexual exploitation of people with intellectual disabilities. In: E.
Emerson et al. (eds). Clinical psychology and people with intellectual disabilities. Wiley.

Example references relevant to thinking about operations and effects of stigma, interpersonal power
and social capital:
Bell, B. G. & Clegg, J. (2012) An ecological approach to reducing the social isolation of people with an
intellectual disability, Ecological Psychology, (24)2, 159-177, DOI: 10.1080/10407413.2012.673983

British Psychological Society (2017). Incorporating attachment theory into practice: Clinical practice
guideline for clinical psychologists working with people who have intellectual disabilities. British
Psychological Society.

English, B., Tickle, A. & dasNair, R. (2018). Views and experiences of people with intellectual
disabilities regarding intimate relationships: A qualitative metasynthesis. Sex Disabil 36, 149–173.
[Link]

Fletcher, H., Flood, A. & Hare, D. J. (2016). Attachment in intellectual and developmental disability: A
clinician’s guide to research and practice. Wiley.

Hall, E. (2010), Spaces of social inclusion and belonging for people with intellectual disabilities.
Journal of Intellectual Disability Research, 54, 48-57. [Link]
[Link]/10.1111/j.1365-2788.2009.01237.x

Sappok, T., Zepperitz, S., & Hudson, M. (2021). Meeting emotional needs in intellectual disability.
Hogrefe.

Sinason, V. (1992). Mental Handicap and the Human Condition: New Approaches from the Tavistock.
Free Association Books.

Example references considering relevant operations of ideological power (many other references in
other sections are also relevant, as ideological power permeates all areas):
Burton, M. & Kagan, C. (2006) Decoding Valuing People, Disability & Society, 21(4), 299-313, DOI:
10.1080/09687590600679899

Carlson, L. (2010), Who's the Expert? Rethinking authority in the face of intellectual disability.
Journal of Intellectual Disability Research, 54, 58-65. [Link]
[Link]/10.1111/j.1365-2788.2009.01238.x

Clegg, J. & Lansdall-Welfare, R. (2020). Psychology and neoliberalism. In: W., Pickren
(Ed.), The Oxford encyclopaedia of the history of modern psychology, Oxford
University Press.

Clegg, J., Murphy, E., Almack, K. and Harvey, A. (2008). Tensions around inclusion: Reframing the
moral horizon. Journal of Applied Research in Intellectual Disabilities, 21, 81-94. [Link]
[Link]/10.1111/j.1468-3148.2007.00371.x

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Fyson, R. & Cromby, J. (2013). Human rights and ID in an era of ‘choice’. J Intellect Disabil Res, 57,
1164-1172. [Link]

Jackson, R. (2015). Who cares? The impact of ideology, regulation and marketization on the quality
of life of people with an intellectual disability. The Centre for Welfare Reform. [Link]
[Link]/uploads/attachment/449/[Link]

Murphy, E., Clegg, J. & Almack, K. (2011). Constructing adulthood in discussions about the futures of
young people with moderate-profound intellectual disabilities. Journal of Applied Research in
Intellectual Disabilities, 24, 61-73. [Link]
3148.2010.00565.x

Example references of relevance for thinking about intersectionality and other aspects relating to
social context, including economic/material power:

Beckles, M. and Bush, A. (2022). Using the Power Threat Meaning Framework for a racialised
individual labelled with intellectual disabilities, schizophrenia and autism: A case study. The Bulletin
of the Faculty for People with Intellectual Disabilities.

[Link]
ork_for_a_racialised_individual_labelled_with_intellectual_disability_schizophrenia_and_autism_A_
case_study

Björnsdóttir, K. & Traustadóttir, R. (2010). Stuck in the land of disability? The intersection of learning
difficulties, class, gender and religion, Disability & Society, 25(1), 49-62, DOI:
10.1080/09687590903363340

Butler, C. (2012). Disability. In: R. das Nair & C. Butler (eds) Intersectionality, sexuality and
psychological therapies. Working with lesbian, gay and bisexual diversity. BPS Blackwell

Dinwoodie, R. & Greenhill, B. (2020). Developing a psychological understanding of the lived

experiences of young lesbian, gay, bisexual and/or trans (LGBT+) people labelled with intellectual
disability (ID). In: A. Toft & A. Franklin (eds). Young, Disabled and LGBT+. Routledge.

Emerson, E. & Gone, R. (2012). Social context. In: E. Emerson et al. (eds). Clinical psychology and
people with intellectual disabilities. Wiley.

Goodley, D. (2016). Autism and the human. In: K. Runswick-Cole, R. Mallett, & S. Timimi (eds.). Re-
thinking Autism: Diagnosis, Identity & Equality. Jessica Kingsley Publications.

Larkin, M. et al. (2018). Cultural affordance, social relationships, and narratives of independence:
Understanding the meaning of social care for adults with intellectual disabilities from minority ethnic
groups in the UK. International Journal of Developmental Disabilities, 64(3), 195-203.

Moore, I., Morgan, G., Welham, A. & Russell, G. (2022). The intersection of autism and gender in the
negotiation of identity: A systematic review and metasynthesis. Feminism & Psychology, 32(4)
[Link]

Lead author: Gareth Morgan