This article was co-authored between David Gray-Hammond and Tanya Adkin
Trigger Warning: Injustice, mental health, systemic oppression, minority stress, fabricated and induced illness, stigma.
“The state creates the rules and dictates the processes to be followed: processes that fragment, silo, and compartmentalise, and in doing so, generate the complexity that is the root cause of clustered injustice.”Clements, L. (2020)
As disabled people not only do we have to consider how our disability affects us inday to day life, but we also have to consider the amount of ‘life admin’ that we encounter daily. Policies, procedures, and legal processes are in place to supposedly serve us, but what they actually serve to do is make an awful lot of these aids and services inaccessible.
We have the Equality Act (2010) that serves the purpose of making it unlawful to discriminate against anybody that has a “protected characteristic”, including disability. At a glance this sounds amazing, and very forward thinking, but does anyone actually know what is involved in bringing a disability discrimination claim against an institution or person?
It’s a resource heavy, and convoluted process. It may even involve solicitors.
Do disabled people have the spoons, resources, or money to access the laws that are put in place to protect us? How can we expect the average disabled person to navigate these systems, and bear the financial and psychological burden.
If you have a disabled child, you have the Education, Health and Care Plan (EHCP) process. Which in its basic form is supposed to involve a holistic assessment of a child to identify their needs and silo them into four broad areas of special educational needs.
Sounds simple, right?
For any parent who has been through this deeply traumatic process (because that’s what it is), it does not do ‘what it says on the tin’. It is again a resource heavy and convoluted legal process that may even put you on the radar of social care, and a victim of institutionlised parent carer blame (IPCB) (Clements. L, and Aiello, L. 2021).
These are just two examples of the many processes that barricade Autistic people and their families out of equitable and fair treatment. They never come one at a time…
So, what is clustered injustice, and why do we need to know about it?
“a group of similar things that are close together, sometimes surrounding something.”Cambridge Dictionary
“the condition of being unfair and lacking justice, or an action that is unfair.”Cambridge Dictionary
Given these definitions, clustered injustice, put simply, refers to legal problems that are encountered by disadvantaged people, whereby the issues are often not singular but ‘clustered’.
While it refers to legal proceedings, it can also be experienced by Autistic people when navigating law, policy, process, and procedure, etc.
Hypothetical case study
Fabricated and Induced Illness (FII) guidance can lead to clustered injustice (Gray-Hammond, D and Adkin, A. 2022). For example, a mother may be seen to be making “frequent and vexatious complaints” (Royal College of Paedatrics and Child Health, 2021) while trying to have their child formally recognised as Autistic, and subsequently access appropriate support. In this case, the mother has greater knowledge of their child than the professionals, but is subjected to IPCB by being accused of FII.
The diagnostic process for a child is a multi-disciplinary approach that spans education, health and social care. Depending on the age of the child, mental health services may also be involved. It’s done this way so that professionals are able to gain a holistic view of the child, and accurately assess them. However, we know that services are woefully underfunded and basic knowledge about Autistic experience is sparse, stereotypical, and loaded with pathologising rhetoric (Dillenburger et al, 2016).
Lets say the professionals get it wrong, lets say the child has an ‘atypical’ presentation (which basically means the assessing professionals do not have sufficient knowledge of Autistic experience in order to be assessing the child). Consider that you have to point this out in the form of a complaint. You are potentially complaining to, health, social care, and education, maybe even different departments in each of those areas. This means that in order for a parent to have their complaint holistically considered they have to complain to separate departments, following separate processes which could easily be considered vexatious and frequent, when in fact there is no other holistic solution available to them.
This is clustered injustice.
Autistic people have similar experiences with accessing disability benefits, healthcare, the justice system, and many more areas of life. Institutions and policy are designed in such a way that the holistic nature of the barriers we face are fragmented, siloed, compartmentalised, and ultimately minimised. At worst it is then used as a tool to further exacerbate an already existing power imbalance. Clustered injustice is a weapon, used by those in power against disadvantaged groups.
What is minority stress and how does it relate to clustered injustice?
Minority stress refers to the unique stressors that are experienced by minority groups as a result of their segregation from society at large by stigmatisation and discrimination.
“Researchers hypothesize that decreased social standing leads to stigmatized minority groups’ being exposed to more stressful life situations, with simultaneously fewer resources to cope with these events. Social structure facilitates this process through acts of discrimination and social exclusion, which are added stress burdens that socially advantaged groups are not equally exposed to.”Botha, M., & Frost, D. M. (2020)
It is simple then to see that there is a direct and causative relationship between clustered injustice and minority stress.
What can be done to mitigate this?
Unfortunately, not a lot at this time. However, community connectedness does relieve the effects of minority stress in Autistic people (Botha, M. 2020). In short, the collaborative problem solving that can arise from finding your community and sharing the psychological burden with those that understand, and sharing resources and the experience of those that have come before you is invaluable.
As it turns out, we’re not anti-social loners after all!
If you see this or experience it, call it what it is. The more people that have a name for it, and actively speak out against it, the more awareness there will be of this particular form of injustice. This oppressive system relies on us not being able to articulate or describe the barriers that we face, the onus is put on us as Autistic people, to identify our needs and advocate for them. So now you have one more tool in your self-advocacy toolbox.
Knowledge is power.
Botha, M. (2020) Autistic community connectedness as a buffer against the effects of minority stress. Diss. University of Surrey.
Botha, M., and Frost, D. M. (2020). Extending the minority stress model to understand mental health problems experienced by the autistic population. Society and mental health, 10(1), 20-34.
Clements, L. (2020). Clustered Injustice and the Level Green
Clements. L., & Aiello.,L (2021). Institutionalising parent carer blame. https://cerebra.org.uk/wp-content/uploads/2021/07/Final-Parent-Blame-Report-20-July-21-03.pdf
Dillenburger, K., McKerr, L., Jordan, J. A., & Keenan, M. (2016). Staff training in autism: The one-eyed wo/man…. International Journal of Environmental Research and Public Health, 13(7), 716.
Equality Act (2010).
Gray-Hammond, D and Adkin, T (2022) Creating Autistic Suffering: Fabricated or Induced Illness, state sanctioned bullying. emergentdivergence.com
McCreary, D. R. (2009). Cambridge Academic Content Dictionary. Dictionaries: Journal of the Dictionary Society of North America, 30(1). https://dictionary.cambridge.org/dictionary/english/cluster
McCreary, D. R. (2009). Cambridge Academic Content Dictionary. Dictionaries: Journal of the Dictionary Society of North America, 30(1). https://dictionary.cambridge.org/dictionary/english/injustice