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Chapter 1
Introduction
I first met Valerie in 2001, after she had written much of her pioneering work about intellectual disability and achieved an international reputation in the field. By the time I met her, the focus of her clinical and theoretical work had moved away from intellectual disability. She was, by then, focusing her attention on a further group of clients who had been excluded and marginalised: those who had suffered organised criminal abuse and had developed dissociative identity disorder as a result.
I had the privilege of working closely with Valerie as a friend and colleague in this latter field, at the Clinic for Dissociative Studies, from 2004 until her retirement in 2016. I worked alongside her almost daily during those years and I was in constant awe of her huge creative intellect, as well as her generosity, her warmth, and her humanity.
I was struck by the power of the extraordinary journey Valerie had taken through the field of intellectual disability and I set about reading and assimilating her prolific writing on the subject. The result was that in 2002 I wrote a lengthy paper about her work for the journal, Free Associations (Galton, 2002). This present chapter is an updated and revised version of that earlier paper.
Valerie’s early work showed that a client does not need cognitive intelligence in order to benefit from psychotherapy and that an intellectually disabled client is likely to make considerable improvements in linguistic and emotional functioning following treatment with psychoanalytic psychotherapy. In addition, she was one of the first clinicians to recognise the particular vulnerability of intellectually disabled clients to sexual abuse, the prevalence of such abuse, and the ways in which psychotherapy can be used to treat its debilitating effects. These ideas are now widely accepted but were viewed with disbelief and hostility when she first presented them in the 1980s. Much of this change in attitude is the result of her work.
All of Valerie’s work is in fields which attract enormous amounts of painful and unwanted associations; consequently, the terminology used to describe these frequently changes. As she points out (Sinason, 1992a), when a term becomes contaminated by association with impulses society wishes to disown, it is replaced by a new, as yet uncontaminated, term. In the United Kingdom, the phrase “intellectual disability” is replacing the term “learning disability” which, in turn, replaced the term “mental handicap” and, before that, “mental retardation”. One of Valerie’s clients told her, “I’ve got four handicaps. I’ve got Down’s Syndrome, special needs, learning disability and a mental handicap.” (Sinason, 1992a, p. 39).
When Valerie joined the Subnormality Workshop at the Tavistock Clinic (Stokes & Sinason, 1992) and began to treat severely disabled patients there, she received a lot of referrals and found it difficult to turn people away. As a result, she was soon seeing a large number of patients, most of them without charge. By 1984, she was treating children and adolescents in three clinical settings and had become increasingly aware that a significant number of her clients, including some who were intellectually disabled, were unable to play with the standard set of toys in her consulting room. She provided new toys, which included large and ordinary-sized dolls and teddy bears. She writes, “The effect was devastating. Within the first session of their use, nine children in three settings disclosed physical and sexual abuse.” (Sinason, 1988a, p. 349) Only after she had worked through her feelings of nausea and disbelief, was Valerie able to realise that she had, up until then, been avoiding knowledge of the abuse because she was unable to tolerate the possibility of its occurring, a process which had been identified by Bowlby (1988).
Valerie was working with a client group who were not usually treated with psychotherapy and this enabled her to feel free from an internal orthodoxy. She felt able to use whatever psychoanalytic technique worked, without knowing why it worked, and then conceptualise afterwards. Gradually, the theoretical underpinning of her clinical work took shape. Between 1986 and 1988 Valerie published four key papers about her work with intellectually disabled clients (Sinason, 1986; 1987; 1988a; 1988b). In addition to introducing a number of important new concepts, the papers are full of compassion and understanding for her clients and contain a large amount of clinical detail. Valerie followed them with a large and continuous output of published work on the understanding and treatment of intellectually disabled clients. In 1992 she published Mental Handicap and the Human Condition: New Approaches from the Tavistock (Sinason, 1992a), which I consider a landmark publication in the history of psychotherapy publishing.
Secondary handicap
Symington (1981) had found that his patient’s level of disability would vary, even from one moment to the next, suggesting that not all of the disability was organic. Sinason (1986) expands and develops this concept and describes a number of defence mechanisms frequently employed by intellectually disabled individuals to protect themselves from the awfulness of realising they are different. These defence mechanisms are defences against meaning and constitute secondary handicaps. These are additions to the original, organic disability, and they attack and deny otherwise intact skills and intelligence. They can also represent a revengeful attack on what is healthy in the client and others, to assuage some of the pain of the original disability (Sinason, 1999a).
By exaggerating a speech defect or lack of language knowledge, or a disabled walk, the intellectually disabled person is able to feel they have some control over their disability. Also, they achieve a narcissistic victory over non-disabled people by fooling them into believing the exaggerated speech or walk is their real voice or real walk. Frequently, the defence mechanism takes the form of an appeasing, disabled smile to create a false, happy self and to keep the outer world happy with them. These concepts do not use any new theoretical ideas; they are a version of Freud’s secondary gain (Freud, 1901) and Winnicott’s false self (Winnicott, 1960 [1965]). These are familiar ideas showing themselves in a different way with this client group.
Secondary handicap can also take the form of severe personality maldevelopment which is linked to, and added to, the original disability. Intellectual disability depletes a person’s inner resources, and excites and attracts emotional difficulty and disturbance (Sinason, 1988b; Stokes & Sinason, 1992). The resulting secondary handicap may be an exaggeration of the organic disability as defence against dangerous impulses such as sexual or violent feelings (Stokes & Sinason, 1992) and may include a hatred of the parents who made them, a hatred of the sexuality involved, a hatred of normality, and an inability to mourn their own lost, healthy self (Sinason, 1986). This personality maldevelopment exacerbates the original loss of normality, as with one lonely, adolescent client who desperately wanted a sexual relationship (Sinason, 1988b). He had such a deep fear of needing help or being humiliated that he aggressively avoided any possibility of meeting or learning to care about someone.
Secondary handicap can also serve as a psychotic defence against trauma (Sinason 1986; 1987). Behaviour which is often explained as part of the original organic disability can be reframed as a version of unrecognised post-traumatic stress disorder. This form of secondary handicap protects against the unbearable memory of trauma, either the trauma of the original organic disability, or the trauma of subsequent sexual or physical abuse. Violent and aggressive behaviour such as kicking, biting, and headbutting can be understood as a psychotic attempt to manage the helplessness inherent in trauma and to omnipotently compensate for the disability. For example, headbanging can be understood as an attempt to rid the mind of bad thoughts. If there has been sexual abuse, violent and sexualised behaviour can be understood as a way of repeating the trauma in an attempt to assimilate it and as a defence against further attack. Eye-poking, cutting, and other forms of self-injury can be understood as attacks on the client’s despised body for being unable to prevent the abuse.
Secondary handicap as a psychotic defence against trauma is also evident in the aggressive cuddling by Down’s Syndrome children through which they enjoy the violence of abusive physical contact whilst showing ostensible affection (Sinason, 1986; Stokes & Sinason, 1992). In another client, compulsive and aggressive masturbation is a way for him to avenge himself on his parents for the attack he fantasises they made on him at birth (Sinason, 1995b).
Sinason (1986; 1990b; 1995a) identifies the therapist’s initial task as elimination of the aspects of secondary handicap which include an exaggerated, disabled, physical appearance, such as a disabled smile, posture or speech. The therapist must acknowledge to the client that there is a better functioning self underneath his or her twisted movements and guttural sounds. The therapist needs to acknowledge the angry, hurt, and painful feelings that lie behind the “handicapped smile” (Sinason, 1986). There follows an opportunity to treat the more pathological kind of secondary handicap represented by the disturbed, envious, and destructive aspects of the personality. The therapist becomes an auxiliary brain, helping the thinking process, and filling in missing words or sentences, whilst being careful not to continue when the client is capable of managing without it (Hollins, Sinason, & Thompson, 1994). This is likely to be a period of crying, rage, grief, and depression as the client mourns his or her lost, healthy self, and his or her limitations, dependency, and terrible feeling of aloneness (Sinason, 1995a). The trauma can be remembered, acknowledged, and healed, in a safe setting with the therapist as protector (see Chapter 7 in this book, by Georgina Parkes; Sinason, 1986).
If treatment can be maintained, there is usually an improvement in internal and external functioning by this point. If there is an accompanying psychosis, the likelihood of which increases with the severity of the disability (Sinason, 1990b), this may now be treated. Valerie has found that a relatively small input of psychotherapeutic resources can make a big difference to an intellectually disabled client’s functioning, which can improve dramatically although not to normal. The improvement in functioning may not be constant and is likely to fluctuate (Hollins, Sinason, & Thompson, 1994; Sinason, 1989; Stokes & Sinason, 1992). Improvement is especially likely to fluctuate if a client has been sexually abused.
Sexual abuse
Valerie was particularly concerned at the high proportion of her intellectually disabled clients who had been sexually abused. In these cases the traumatic experience of the original disability is compounded by the further trauma of abuse. Over a two-year period, out of 200 referrals of emotionally disturbed children and adults with an intellectual disability, Valerie found that 140 had been sexually abused (Sinason, 1994). Intellectually disabled children and adults are particularly vulnerable to sexual abuse for a number of reasons (Sinason, 1988b; 1989; 1992a; 1993a; 1994; 1995b). Their lack of sexual knowledge and assertiveness may make it very difficult for them to say “No” to the perpetrator. They also may be physically dependent on those abusing them. Their guilt and shame at being disabled, and the fear that comes from knowing some people wish they were dead, makes them feel they do not have the right to say “No”.
When abuse has occurred, the intellectually disabled victim is likely to find it harder to communicate about the abuse so it is more likely to continue. Diagnosis is particularly difficult if the victim is nonverbal. He or she is more likely to be disbelieved because of the widespread belief that sexual attractiveness plays a part in abuse. The psychological symptoms and the disclosure of the abuse are often wrongly diagnosed as psychotic fantasies arising from the original organic disability, and convictions are extremely difficult to achieve (Cooke & Sinason, 1998). Likely symptoms will include self-injury, excessive masturbation, and in children, highly sexualised play (Sinason, 1987; 1992a; 1994).
Sexual abuse is more likely to lead to psychological disturbance in an intellectually disabled victim than a cognitively more able victim (Cooke & Sinason, 1998; Sinason, 1989; 1993b; 1996b). An intellectually disabled victim is more likely to have pre-existing psychological and social problems and, possibly, past psychiatric illness. Past victimisation experiences, low self-esteem, and the lack of a supportive social network combine to exacerbate the impact of the trauma. The disbelief of others increases the likelihood of psychosis in this group (Sinason, 1990a; 1993b; 1994).
These victims often lack a cognitive process to aid healing and enable the painful aspects of the abuse to be processed and symbolised (Cooke & Sinason, 1998; Sinason, 1997d). Self-injury such as cutting and poking – the most common reason for referral of the sexually abused intellectually disabled client (Sinason, 1993b) – is an attack on the client’s own, despised body as the hated, helpless victim who was not strong enough (Sinason, 1996a). The client may even have experienced an involuntary orgasm or sexual awakening as the body’s survival mechanism to accommodate the intrusion (Sinason, 1996a), in which case the body is even more despised. Valerie has found that the effects of sexual abuse on an intellectually disabled victim can be so severe that in some cases it can even become the primary cause of intellectual disability (Sinason, 1989). Disability becomes a defence against the memory of sexual abuse because, as Sinason writes, “To throw out the knowledge of an abusing trusted adult means throwing out other learning…” (1987, p. 104). Valerie has found that when intellectually disabled clients are able to disclose abuse, they often reveal their intelligence. She notes some clients show a dramatically improved level of language and other functioning after they have remembered and disclosed the abuse in the safe presence of a psychotherapist able to bear the knowledge of the abuse (Sinason, 1986; 1987; 1989; 1992a). However, she notes that, over the long term, a client’s improvement will fluctuate and that none of her clients have regained their potential for more than part of each day (Sinason, 1989).
Some victims of abuse go on to become abusers themselves, whether intellectually disabled or not. Evidence indicates that approximately one victim out of every fourteen is likely to do so (Sinason, 1996a) in response to a need to transmit the same complex sequence of pain followed by pleasure as they experienced themselves in the original trauma. Male clients are more likely than female clients to repeat the abuse cycle (Sinason, 1994). Such a cycle of repetition was noted by Klein (1932) and others as victims find that, “the only way to deal with an intolerable experience, the memory of which cannot be borne, is to expel it by making someone else experience it instead” (Sinason, 1990a, pp. 550–551). Valerie notes that intellectually disabled offenders, whether committing sexual or other crimes, are less likely to be taken seriously as offenders by professionals (Sinason, 1997a). Such lack of acknowledgement of their crimes can actually increase the offender’s sense of guilt and level of disturbance and cause further sexually disturbed behaviour (Sinason, 1997a; 1997d).
Whether a client’s cognitive deficit is the result of chromosomal abnormality, organic illness, birth injury, violence, sexual abuse, lack of attachment, poor schooling, malnutrition, or a combination of factors (Sinason, 1997d), the level of emotional disturbance incre...
