Thursday, December 3, 2020 was the International Day of People with Disabilities instituted by the United Nations. Days named for particular aspects of our fellow-citizens provide a chance for us all to educate or re-educate ourselves. They also provide a sense of worth and pride in those who feel recognised. A name is a very powerful act and intimately related to identity.
Being a person with a Disability is a relatively common experience. It is estimated that approximately 15% of the world’s population (1 billion) live with disability, and of these 450 million live with a mental or neurological cognition. Only a third of these will seek help because of shame, stigma, discrimination and neglect. And of course, there might not even be the resources or interest available for that small percentage who seek help (WHO, 2011).
Approximately 1-3% of the world population have an intellectual disability, and significantly more live in low-income countries. Within the UK, USA and Europe most people with mild intellectual disability come from the most disadvantaged and poor social class. In other words, there is a political aspect to this condition. Whilst there are some disabilities of a severe and profound kind spread across all social classes, mild intellectual disability is a tragic beacon of social inequality. The United Nations Develop Program estimates that 80% of all people with disabilities live in low-income countries, with poverty adding a further disadvantage (WHO, 2011).
The theme for International Day of People with Disabilities in 2020 is “Not all disabilities are visible”. Having a disability that is not immediately apparent, can be a unique problem in itself. The mother of a son whose intellectual disability did not show on his face said, “My son faces an experience of betrayal almost every day. People talk to him and smile at him because he is a handsome fellow and then after a couple of sentences, they realise he is not the same as them. They turn away or leave him or embarrassedly stop the conversation. I wish he looked disabled so he would not get repeatedly hurt like this”.
Disability and Trauma
The theme of invisibility is particularly relevant to the complex trauma and dissociation field. Scars from trauma can be invisible. The scars of sexual trauma are perhaps the most hidden of all, and we know that dissociative disorders are also often hidden disorders. Working on the interface between disability, complex trauma and dissociation can indeed be an experience of working with the barely known, the barely spoken, the barely visible.
Possibly one of the most disadvantaged and poorly served group of people are those with intellectual disability, dissociation, and a history of sexual abuse. Research suggests that people with intellectual disabilities are four times more likely to experience sexual abuse than those without disability (Martin et al, 2006; Mitra et al, 2011).
Language and communication barriers appear to significantly impact the risk of abuse, with language barriers making it harder to interrupt abuse, as well as posing barriers to reporting abuse (Gil-Llario et al, 2019). By way of illustrating such barriers we discuss the case of Melanie, a young woman sexually abused by her stepfather. Born with intellectual disability and severe communication impairment, her terrible secret was literally uncommunicable. She made word approximations and was only understood by her immediate family.
However, when aged in her early teens, a speech pathologist began to teach her MAKATON a method of key word signing, which is used to assist communication, often in conjunction with spoken words or word approximations. Some of the early signs are for family, friends, feelings – as well as the basics such as food, clothes and activities. Gradually Melanie began to communicate about one particular family member signing ‘Dad Bad.’ Quite often. And words like ‘scary’. She began to point to her body and the horrible truth became apparent. Yet this young woman was difficult to understand with highly idiosyncratic signing and poor speech, with both due more to her physical disability than her intellectual disability, which actually turned out to be milder than was initially assumed.
The first year of contact with her therapist (one of the authors of this article) was mostly spent learning to communicate, given Melanie’s specific communication limitations. Melanie and her therapist used a jumbled and creative mix of idiosyncratic signs, picture cards and word-approximations (which became easier to understand with time.)
It was a miracle this woman was able to communicate her abuse and access supports at all. The obstacles to reporting abuse and getting help can be almost insurmountable. While it was wonderful that she could get support, such communication problems also meant that a chance of justice in our legal system was almost impossible. Interpreters cannot easily work with such idiosyncratic signing and those who know such clients very well may not be considered ‘objective interpreters’.
In Shakespeare’s Titus Andronicus, arguably his most violent play, Lavinia is raped and her tongue is cut out to silence her. Her arms are also cut so she cannot write. With tears on her face she holds a stick between her teeth to write the name of her abusers. There are few areas Shakespeare has not touched upon and it was painfully prescient that Lavinia was murdered to hide the shame felt by her family that she had been raped.
However, where someone has the courage to speak, and someone is willing to hear, change is possible. Sometimes we need creative methods to help this telling. Hollins and Sinason (2020) have published books where the adult story is totally told by pictures. The subjects include abuse, going to court, and physical assault so that the victim can point to pictures which tell the story.
Often clients with intellectual disability and sexual abuse present in services with other issues. Most commonly, they come for ‘behaviour management problems’, sexualised behaviours, or self-harm such as excoriation. For example, Becky, a middle-aged woman who presented to counselling with anger management issues and excoriation, gradually began to talk about how she hated her body. Slowly over time she began to speak of abuse by male relatives in her family. Once she began to talk of it and was removed from contact with the abusers the excoriation almost completely ceased after only the briefest of behavioural programs. Her anger, mostly expressed towards men, gradually faded and she was able to talk about the good men, male friends in her life and kind male carers. She even ended up living happily in a group home with both males and females. Yet often clients with intellectual disability are perceived as difficult to work with or even unlikely to make much progress in counselling. However, at both The Tavistock Clinic and St George’s Hospital in London 80% of children and adults referred for behaviour problems turned out to be suffering from abuse (Sinason, 2011).
Disability, trauma, and COVID: Even more hidden
Of course, 2020 has been the year of COVID-19. In a world of withdrawal and lockdown, all issues of invisibility are arguably worsened. Those with disability are more vulnerable to COVID 19 infection, so have usually endured more strict and prolonged lockdown than other groups. This has exacerbated all sorts of issues, including the isolation and hidden nature of abuse.
As therapy and services have gone on-line technology gap between those with disability and those without, has become even more apparent. Technology can be difficult to access for people with a disability, either due to cost, or due to the need for technological adjustment. At the beginning of lockdown this placed many isolated people with disability at significant disadvantage as they were unable to use telehealth in the same way other people were. Imagine being Melanie and having to communicate with a GP or therapist by phone. It would be impossible.
In Australia, when lockdown commenced, these issues were forced to the front. Peek lobby groups were immediately active in lobbying the Government to support people with disabilities to purchase technology to support them in having medical and psychological consults. Funding was made available to purchase equipment for many people. However, without a doubt, this did not reach all people with a disability, further silencing them.
Children and adults who have been abused, have an intellectual disability, and are dissociative are hiding in plain sight. Semi-trained staff hear different voices as being ‘just part of the disability’, while head banging and eye poking is almost always treated as a symptom of disability, rather than something of psychological meaning.
ISSTD has provided several workshops over the years and we welcome colleagues interested in this topic taking this further. We hope that this article will stimulate further discussion of this important aspect of our work.
References
Hollins, S & Sinason,V. (2020). Mugged, Books Beyond Words , London
Martin S. L., Ray N., Sotres-Alvarez D., Kupper L. L., Moracco K. E., Dickens P. A. et al. (2006) Physical and sexual assault of women with disabilities. Violence Against Women 12, 823–37.
Mitra M., Mouradian V. E. & Diamond M. (2011) Sexual violence victimization against men with disabilities. American Journal of Preventive Medicine 41, 494–7.
Mitra M., Mouradian V. E., Fox M. H. & Pratt C. (2016). Prevalence and characteristics of sexual violence against men with disabilities. American Journal of Preventive Medicine 50, 311–17.
Sinason,V. (2011). Mental Handicap and the Human Condition: an analytic approach to intellectual disability , revised 2nd edition, Free Association Books
WHO (2011). World Report on Disability. https://www.who.int/teams/noncommunicable-diseases/disability-and-rehabilitation/world-report-on-disability