The public discourse surrounding sex and severe disability over the past 40 years has largely focused on protecting vulnerable populations from abuse. However, health professionals and activists are increasingly recognising the inherent sexuality of disabled persons and attempting to find ways to accommodate their intimacy needs. This essay explores several ethical issues arising from such efforts.
- Concept of health
- mentally diasbled persons
- quality/value of life/personhood
- right of the institutionalised to treatment
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- Concept of health
- mentally diasbled persons
- quality/value of life/personhood
- right of the institutionalised to treatment
The public discourse surrounding sex and severe disability over the past 40 years has largely focused on protecting vulnerable populations from abuse. Although in the decades since the American Association of Sex Educators, Counsellors and Therapists sponsored its first ‘Sexuality and Disability’ conference in 1980, considerable progress has been made towards recognising the sexuality of individuals with moderate physical disabilities, far less attention has been devoted to the intimacy needs of the mentally impaired and inhabitants of institutions. This lack of attention is not surprising, particularly with regard to individuals with significant cognitive limitations. As the ideals of competence and consent came to dominate medical ethics in the 1970s, the sexual desires of persons of limited capacity raised vexing and often unpalatable questions. An easy solution was to view sex as off-limits for those with impaired IQs. However, an English mother's 3-year-long crusade has finally shattered this taboo. Lucy Baxter's international campaign on behalf of her adopted son, Otto, has also made clear that the sexual needs of the severely disabled require specific exemptions from certain general ethical and legal principles.
Otto Baxter is a 21-year-old man with Down's syndrome. His mother's efforts to help the young man lose his virginity garnered international headlines when she told the press that she ‘wouldn't object’ to his visiting a prostitute.1 Some critics condemned her statement as ‘disgusting’ and suggested that she was ‘pimping’ a ‘vulnerable young man’ whom she should have been protecting.1 In contrast, Rachel Wotton, an internationally renowned prostitute, who specialises in sex for the disabled, met with Otto at his Oxfordshire home in May. Zoo magazine offered to pay the fees for Otto's encounter. Eventually, Otto declined Wotton's services, expressing a desire to wait for ‘Miss Right’.2 Yet the legal and moral challenges raised by his case still deserve serious consideration.
Sexual liberty has increasingly come to be regarded as a basic human right.3 As the organisation Health, Empowerment, Rights and Accountability has written:
“Sexual rights are a fundamental element of human rights. They encompass the right to experience pleasurable sexuality, which is essential in and of itself and, at the same time, is a fundamental vehicle of communication and love between people. Sexual rights include the right to liberty and autonomy in the responsible exercise of sexuality.”4
This approach to sexual liberty adopts a ‘negative rights’ understanding of the subject. In short, sexual liberty means the autonomy to make one's own sexual decisions independent of state or societal interference. Crucial to this approach to sexual liberty is the recognition that it is not merely sexual stimulation that is an essential human right, but also the sexual pleasure that stems from relations between consenting individuals. Denying an individual the right to pursue sexual contact or even intercourse with his fellow human beings would not be excusable on the grounds that this individual might achieve comparable pleasure through self-stimulation, because social scientists and sexologists have long recognised that the pleasure achieved through two-party sexual contact is both greater than and distinct from that achieved through masturbation. As moral philosopher Eugene Schlossberger has persuasively written:
“Studies of human sexuality show that manual stimulation of the genitals is generally a more effective method of producing the appropriate physical sensations than is intercourse (since manual stimulation allows for greater control). Thus, were those who desire sex primarily seeking the appropriate physical stimulations, manual stimulation would be preferable to intercourse. Thus the fact that most people prefer intercourse to masturbation shows that most people's sexual desires are value-laden…. In short, even those who frequent prostitutes are generally more interested in the psychological aspects of sex than the purely physical ones….”5
Many individuals have physical limitations such as cerebral palsy and spinal cord injuries so extreme that self-stimulation is not possible. However, even for individuals who are physically capable of masturbation, the act of physical contact with another human being appears to provide a degree of pleasure and fulfilment entirely distinct from mere masturbation, even when that contact lacks emotional intimacy and is the product of a commercial transaction. Psychologists have long recognised this phenomenon, although they have never adequately explained the causes. What is clear is that millions of individuals do employ the services of prostitutes each year, choosing to spent limited financial resources on a form of pleasure not available through masturbation. If any right to sexual pleasure does exist—and this paper is grounded on that premise—then it must be a right to mutual contact, not merely self-stimulation.
At the same time, many advocates for such freedom do accept restrictions on the commercialisation of sex in the belief that prostitution is inherently coercive and denies genuine sexual liberty to sex workers. Other arguments against legalised prostitution include concerns over organised crime and human trafficking that, for many ethicists, trump the specific right to sell one's body for sexual purposes. As a result, many jurisdictions—including Great Britain and all but two American states—prohibit the sex trade entirely. The merits of these laws have been widely debated elsewhere and are beyond the scope of this commentary. What is important to note is that had Otto Baxter's mother wished to hire a prostitute for him, such an arrangement would have been illegal in his native country. Some disabled British citizens currently travel abroad for such services, and disability rights advocate Asta Philpot has organised trips to European brothels for this purpose—an enterprise depicted in the BBC documentary ‘For one night only’ (2007). For those who are physically incapable of travel, or cannot afford the cost, such opportunities remain unavailable.
If sexual pleasure is a fundamental right, as this author believes, then jurisdictions that prohibit prostitution should carve out narrow exceptions for individuals whose physical or mental disabilities make sexual relationships with non-compensated adults either impossible or highly unlikely. Such an exemption would allow women such as Ms Wotton to offer her services, under public regulation, without compromising broader prohibitions on the sex trade. It is highly unlikely that the sorts of coercion feared by opponents of prostitution, or the concomitant evils of physical abuse and human trafficking, are going to spread if a small number of disabled individuals seek sex services from surrogates in their own homes. If opponents of prostitution fear a slippery slope, society might require a licensed physician to certify the surrogate-seeking patient to be both ‘competent’ and ‘disabled’, and to prescribe such services as necessary. Alternatively, disability rights advocates might train their own case workers and advocates to perform such evaluations. As a general rule, rights—sexual and otherwise—should be curtailed only to the extent that such restrictions are necessary to protect the rights of others. That anyone's autonomy would be meaningfully limited by paid sexual assistance for the disabled seems far-fetched.
A second area in which reform is desperately needed is the ‘no sex’ policies that exist in American nursing facilities, mental hospitals and group homes. Many such facilities require the doors of patients' rooms to be open at all times, making intimacy all but impossible. The assumption underlying these restrictions is that anything short of clearly expressed wishes by a fully competent and rational individual does not fulfil a minimum standard to consent to sexual relations. The principle advanced by this approach is that institutionalised individuals require a higher degree of protection than those living outside of institutions. In many matters, this is certainly the case. However, in regard to sexual relations, this ‘higher’ standard often serves as an obstacle to meeting both the wishes and interests of individuals who cannot conform to ‘real world’ standards of consent.
I believe a far more fluid standard is called for in cases of long-term institutionalisation. Sexual relationships between institutionalised individuals ought to be encouraged, as are other forms of social relationships, to the degree that they are mutually rewarding to both partners. A rule of reasonability, derived from overt social cues, should guide caregivers in determining the bounds of acceptable conduct. In the larger world, a verbal ‘yes’ or ‘no’ are reasonable guides to determine what is sexually permissible. Many institutionalised patients are incapable of providing such verbal cues. With severely limited patients, many of whom are nonetheless capable of experiencing sexual pleasure and even intimacy, a simple smile might be enough to betoken consent. All smiles, of course, do not betoken consent. Yet rather than enforcing a restriction that is over-inclusive—albeit one that is easy to enforce, with low administrative costs—the caregivers of institutionalised individuals should evaluate smiles and other forms of non-verbal and indirect assent in the context of the patient's life. For example, a married couple in which one partner has descended into dementia might still take both pleasure and meaning from sexual intercourse, even if one partner cannot overtly consent in the manner that would be expected of a person without dementia. However, the same cues offered by that individual with dementia might not indicate consent to intercourse with a stranger. These are complex, nuanced determinations that deserve evaluation on a case-specific basis, rather than the one-size-fits-all proscription currently in place.
Vulnerable individuals should certainly be protected from unwanted contact. On the other hand, just because these individuals are vulnerable does not mean that all contact should be assumed to be unwanted. Sexual liberty, like all other forms of freedom, should be curtailed only to the point that is necessary to protect the health and safety of the individuals themselves. To err too far on the side of caution, preventing all sexual pleasure and intimacy in the name of protecting the vulnerable, is itself a cruel violation of a patient's basic rights.
More challenging than a ‘negative rights’ conception of sexual liberty is one that also embraces a ‘positive right’ to sexual pleasure for the disabled—either for those individuals who are too impaired to find mates and/or those who are so physically incapacitated that they are incapable of pleasuring themselves. Several European nations, including Germany, The Netherlands, Denmark and Switzerland, allow limited ‘touching’ services for the severely disabled through non-profit organisations.6 Nina de Vries, a Dutch-trained therapist based in Berlin, has been offering such services to patients with Down's syndrome, autism and severe brain damage since 1997, including to individuals incapable of speech or complex communication. (She describes herself as a sexual assistant, or Sexualbegleiterin, but does not reject the term prostitute.) Despite considerable demand for such ‘massages’, these services remain entirely privately funded. No such charitable funding appears to be available in the USA or Great Britain. Yet if we are going to have a national debate in the USA surrounding the definition of health care, we should seriously consider including sexual surrogacy for the disabled in the basket of services that we provide. Already, we have made the choice to pay for other purely social and cosmetic services to help unfortunate individuals lead more pleasurable and productive lives—such as breast reconstruction for mastectomy patients and plastic surgery for children born with cleft lips. As a society, we also provide food for those who cannot feed themselves—even delivering it to their homes, when required. Sexual pleasure ought not be viewed any differently. Most western healthcare systems acknowledge this, to some degree, paying for medications to treat erectile dysfunction in men and subsidising birth control pills for women. Some American states even fund abortion services and assisted suicide. Any notion of healthcare broad enough to encompass cosmetic surgery ought to be generous enough to include funding for the sexual pleasure of the disabled. Surrogacy, of the sort offered by Wotton and de Vries, should be covered by all public health systems and private insurance plans. Although such subsidisation might prove costly, and limited healthcare resources might be used to implement such a programme, the solution is to redirect resources from other endeavours to sexual health and health care more generally, not to ignore a pressing need of a vulnerable population because other vulnerable populations have equally or more pressing needs.
Those who oppose the legalisation of sexual surrogacy and prostitution for the disabled will probably argue that such legislation will inevitably lead to legalised prostitution more generally—that this proposal is a ‘back door’ argument for a commercial sex trade. In doing so, some may suggest that the sexual rights of disabled patients be balanced against the rights of potential sex workers to be protected from exploitation. Such an approach fails to acknowledge the unique situation confronted by those who are both disabled and, as a result, sexually deprived. An analogy might be drawn with the previously noted policy of providing breast implants to cancer patients who have received mastectomies, which is done in recognition of the distinct nature of this need. This policy has not snowballed into demands that breast enhancement be funded publicly for the benefit of those women born flat-chested or those who wish to appear in adult films. Clearly, injury and illness create contests that allow for forms of remediation that are not offered to the general public, in which similar services would merely provide enhancement. Disability offers yet another case in which such a distinction is merited.
This author has questioned elsewhere the morality of bringing severely disabled infants into this world when the technology exists to prevent such births.7 8 However, once individuals with disabilities have achieved personhood, they should receive the same rights and opportunities as all able-bodied and able-minded human beings. For too long, our society has viewed these unfortunate individuals as non-sexual beings, adopting rules in matters such as consent and reimbursement that may serve the interests of able-bodied society, but do a profound disservice when applied to those with disabilities. If we are to overcome these obstacles, and to live in a more just civilisation, we must begin to see sexual pleasure as a fundamental right that should be available to all.
Competing interests None.
Provenance and peer review Not commissioned; externally peer reviewed.
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