Disability, Sexuality and Intimacy

12 Disability, Sexualityand Intimacy

Pamela Block, Russell Shuttleworth,Jacob Pratt, Hope Block, andLinda Rammler

Overview

In this chapterwewill discuss theoretical perspectives on sexuality and disability andhow these relate to occupational therapy research, scholarship, practice and politics.We will discuss two autistic people who are in love and wish to be together and thenegotiations, politics and policies that shape their experience of dating and intimacy.Disability shapes their experiences and occupations of sexuality and intimacy.Fulfilling their desire to be together is a time-consuming occupation not only forthese two individuals but also for their families, support staff, and agency admin-istration. What results is a complex tangle of supports and barriers, which must becollectively navigated to enable the intimate relationship’s continued existence.Issues of access and the need for facilitation are central to their ability to living andloving as they choose. Our group of co-authors includes the autistic couple (HopeBlock and JacobPratt) and Jacob’s colleagueLindaRammlerwho is a consultant andresearcher in the area of autism, with a background in special education anddevelopmental psychology, and two anthropologists who work in occupationaltherapy programmes (the first author Pamela Block, who is Hope Block’s sister, andthe second author, Russell Shuttleworth).

Teaching Sexuality and Disability

It has been established that sex is an important life occupation and the activitiesof sexuality and intimacy rightly fall within the realm of studies of occupationand occupational therapy (Sakellariou, 2006a; Sakellariou and Sawada, 2006;

Politics of Occupation-Centred Practice: Reflections on Occupational Engagement across Cultures,

First Edition. Edited by Nick Pollard and Dikaios Sakellariou.

� 2012 John Wiley & Sons, Ltd. Published 2012 by John Wiley & Sons, Ltd.

Sakellariou and Sim�o Algado, 2006a,b). The artificial binary of ‘function’ and‘dysfunction’, so central to much of occupational therapy teaching, is rendereddoubly problematic in the area of sexuality and intimacy, given the subjective natureof desire so fundamentally shaped by cultural contexts, beliefs, social structures,relations of power and individual preferences. For disabled people, the social realmsof sexuality might be more complicated and difficult to navigate than the technicalaspects of sex. Thus, as Sakellariou and Sim�o Algado (2006a) point out, OTs whobecome embroiled in details of positioning and energy conservation may be missingthe point.

Editorials have mentioned that sexuality often does not play a prominent role inOT programme curriculae (Moores, 2008; Sengupta and Stubbs, 2008; Spencer andWainwright, 2008). Penna and Sheehy (2000) suggest that only a minority of OTsprovide sexual education as part of their practice. I (first author) have been teachingsexuality to third-year occupational therapy students for eight years. We do a seriesof readings and a film viewing on the topic, followed by discussions (Blocket al., 2005). We discuss the history of attitudes and policies concerning sexualityand disability in institutional settings such as nursing homes and psychiatric facilitiesas well as perceptions of family and community members. We discuss currentpolicies and practices. We acknowledge that some people are uncomfortable dis-cussing this subject but also the need to overcome personal discomfort in order toprovide accurate information and support in this area. Every year students commentthat this is an underrepresented area in their studies, yet also an area that many haveencountered in various contexts during field work. The powerful nature of the topicwas reinforced this year when one of my students chose it for her final project. Eachyear the students complete disability studies research posters as a final assignmentand then participate at a juried poster session at the local Center for IndependentLiving (CIL). In addition to the judging, we have ‘people’s choice’ awards basedon popular vote (students, CIL staff and service recipients). In spring 2010, the posteron sexuality won by a landslide.

Historically, sexuality and disability were seen as a problem to be controlled byadministrators within residential institutions (Block, 2000, 2002). In a basic exam-ple of occupational apartheid, disabled inmates were gender segregated and givenlittle privacy or choice. Even now, the concept of sexuality as a human right issometimes not respected as suchwithin institutional settings or by cliniciansworkingtherein. A few years ago, one of my students commented that nursing homes werepublic spaces, and since sex in public spaces were prohibited, nursing home residentswere forbidden to have sex. Other students have stated that their religious beliefssuperseded institutional policies or client preferences. Fortunately, most studentsand practitioners have more nuanced perspectives. However, institutional settingsmeant (and still mean) increased vulnerability to sexual violence perpetrated by staffor other residents (Block, 2000). Disabled people living at home face the possibilitiesof overprotective parents, access barriers to finding partners, and attitudinal prej-udice that they are either asexual perpetual children (parents) or hypersexual beingsthat are dangerous to have around (neighbours) (Shuttleworth and Sanders, 2010).

Students share stories about sexuality during fieldwork; they debate issues ofinformed consent and negotiating the feelings of family members and institutional

Disability, Sexuality and Intimacy 163

policies. One told a story of two nursing-home residents with dementia who fell inlove. She contrasted the heart-warming joy of the two people in lovewith the horror,anger and hurt of family members, including community-based spouses. Othersdiscussed rules regarding (forbidden) sexuality in short-term psychiatric settings andhow the residents flouted the rules. Others discussed hospital bedside conversationswith people who had recent spinal cord injuries. Occupational therapists must beprepared for all these experiences andmore. As informed practitioners we need to beaware of the diversity of sexuality and disability issues and the utility of employingdiverse methodologies and conceptual frameworks for both research and practice.Different perspectives will be called for depending on the issue, and sometimesmultiple perspectives will be necessary.

Theorizing Sexuality and Disability

Research in sexuality and disability still tends to be dominated by approaches that(1) perceive disabled people’s sexuality as a problem to solve at the level of theindividual; (2) are explicitly or implicitly concerned with treatment objectives;(3) focus on how individuals stack up on a scale of sexual functioning; and (4) viewthe issue of disabled sex in terms of physiological, psychological, social andrelational norms derived from research with nondisabled people. This kind ofresearch is obviously very useful for our practice with individual service recipients;however, its predominance has tended to marginalize many important everydayissues that disabled people bring up when talking about their sexual lives.It is imperative for us to be knowledgeable about the sociocultural and policycontexts that affect disabled people’s everyday occupations, including that of theirsexual lives.

A focus on individual function, of course is absolutely necessary at variousmoments in many disabled people’s lives. For example, rehabilitation is crucial forthose peoplewho experience a spinal cord injury as they learn how to function, adaptand accommodate to their new physiological condition. Addressing sexualconcerns is also paramount during this time and, as many researchers have argued,should be a crucial aspect in the rehabilitation process (Tepper, 1997). Thus,rehabilitation research on sexuality and intimacy for people with a range ofimpairments remains an important concern. Interestingly, a research focus onindividual functioning does not always reinforce normative sexual practices. Usingthe example of the sexual rehabilitation of peoplewith spinal cord injury again, someresearchwith this population describes their loss of genital sensation and subsequenterotic investment in areas of the body that have retained sensory feeling (Whippleet al. 1996), which shows them actually reconfiguring their relation to normativesexual functioning.

However, what are some of the important issues and perspectives that have beenleft out of the sexuality and disability research and by implication out of policy andpractice – research that involves investigating the sociocultural and policy contexts,which can enlarge our understanding of the context of disabled people’s sexual lives

164 Politics of Occupation-Centred Practice

and can inform our practice? Several issues remain underresearched because theyoften make people uncomfortable – such as personal assistants or other careproviders helping disabled people in some practical way to express themselvessexually (for example, buying condoms for a client, or positioning clients so theycan masturbate or have sex with another disabled person). Another example of anunderresearched area is the issue of some disabled people (mostly men) accessing orwanting to access sex worker services and the legal, cultural and other barriers theyface when they try to do so. There has even been less research in non-Westernsocieties on disabled people’s sexual issues and the barriers that they sometimes facein trying to lead enjoyable andmeaningful sexual lives. In a globalizingworld,we areobliged to understand how people in other societies deal with these issues.In addition, when researchers plan research on sexuality and disability, disabledpeople are often not asked what the important issues are for them and/or are notincluded as co-researchers in some way. Finally, there has been a significant lack oftheorization in sexuality and disability research, which has effectively resulted in anarrow view of our practice concerns. The effects that all this can have on ourpractice with clients is that certain sexuality and disability issues, therapeutictechniques and ways of looking at a particular problem appear to be cut and dried.Issues and perspectives of equal or greater significance can be neglected and maybenot even be perceived.

Research on Policy Context: The First Step in a MoreProgressive Practice

Ten years into the new millennium there is still a marked lack of innovativesociopolitical and cultural research in sexuality and disability – work that criticallyanalyses social practices, public policies and cultural meanings and evaluates theirimpact on disabled people’s sexual lives. Sociopolitical research that especially takesaccount of how local policies can affect disabled people’s sexual lives is imperative(Shildrick, 2004; Abbot and Burns, 2007; Shuttleworth, 2007b). Policy contextsrelating to such controversial issues as facilitated sex and sex work vary widely evenamong Western societies. For example, consider the vastly different policies con-cerning sexwork and how this can affect disabled people’s sexual access.Working asa personal assistant for physically disabled men for many years in the San FranciscoBay Area, I (second author) occasionally heard talk of some men’s visits to sexworkers, which was usually conveyed in hushed tones. This issue was not allowed toreach the level of public discourse because of the illegality of sex work in California.I occasionally facilitated access to sex workers for one of the disabled men whoemployed me and the risk involved in the situation was certainly palpable to us interms of the often difficult process of making and maintaining reliable contactsamong sex workers and their anxiety about being arrested (Shuttleworth, 2000).

In Sydney, Australia where I currently reside, sex work is decriminalized and thediscourse around disabled people’s access to sex worker services is public, with sexworkers, disability organizations, social critics and disabled people all contributing


their perspectives to the discussion. While there are still barriers to disabledpeople accessing sex worker services, these impediments are programmatic, attitu-dinal and architectural and not related to the legality of the service. However, thosewho attempt to research such issues as facilitated sex and access to sex workerservices can encounter resistance from multiple sources including funding mechan-isms, ethics committees, traditional disciplines and even some disabled peoplethemselves.1

The issue of facilitated sex provides perhaps the best example of an issue that hasbeen neglected in research and thus can be kept at arm’s length in policy discussionsand outside the purview of our practice. Facilitated sex is assistance with a sexualactivity provided to a disabled client by a personal assistant (PA) or other provider.This assistance could include positioning the disabled person formasturbation or forsex with a partner, helping her or him undress, assisting with stimulation, trans-ferring them to a bed or couch, transporting them to a partner’s residence, pur-chasing condoms, or providing reminders about using birth control (Tepper, 2000;Mona, 2003). The assistance that I provided for my employer, which I describedabove,would also be included. Todate, theUnited States still has nonationally basedpersonal assistance services (PAS) programme and so services vary from state to state(Alice Wong, personal communication, 2 November 2010).

There are many pragmatic and ethical issues associated with facilitated sex inthose situations in which the disabled person resides in a familial, an institutional, ora quasi-institutional setting such as a group home, or when s/he has no say in thedecision of who provides their personal assistance services. Yet for those disabledpeople living independently in the community who control this decision and directlypay their PAs there are still a range of concerns. Most troubling is that there are nopolicy guidelines in place to govern sexual facilitation practice – meaning thatnegotiating this servicewith a PA is entirely up to the disabled person.Many disabledpeople, of course, might be reluctant to broach this subject with their PAs because ofbeliefs that one’s sex life is a private affair and the value placed on doing things foroneself in this area (Shuttleworth, 2007b).

It is however risky to raise facilitated sex as a research and policy, and byimplication practice, issue. Facilitated sex does indeed transgress the cultural viewof sex as private and as an autonomous project of the self, and PAswho assist a clientwith sexual activity risk being seen as sexual participants and may be legally liable ifpayment occurs. Mona (2003) notes certain legal ramifications in her discussion ofPAS in theUnited States, and Shildrick (2007) discusses similar legal issues relating tofacilitated sex in the United Kingdom.2 As I queried in a recent article,

Is it, then, better to leave this issue beneath the research, policy and practice radarso that only those disabled people who are bold and persuasive enough can negotiate

1Nevertheless, there is some research on facilitated sex for disabled people (Earle, 1999, 2001;

Bonnie, 2002; Brown and Russell, 2005; Sanders, 2010) and disabled people’s access to sex workerservices (Sanders, 2007, 2010; Wotten and Isbister, 2010).2Other issues that warrant concerns in regard to facilitated sex are the possibility of abuse of either thedisabled person or the personal assistant, and especially for those providers from more professionalized

services, the transgression of professional boundaries.


this kind of help privatelywith their assistants?Or should this issue be brought to theattention of researchers and policymakers with the possibility that conservativerestrictions will be put in place that reflect mainstream culture’s view of whatconstitutes a moral sexual encounter? (Shuttleworth, 2007b: 5)

Thus far, the ethical, practice and policy implications of facilitated sex havereceived minimal attention within research in the field.

Sexuality and Disability in Non-Western Societies

Another research issue that demands our attention as informed practitioners is howthe sexuality of disabled people is viewed in other societies and any sexual healthconcerns thatmay arise. It is unfortunate that 90per cent of research on sexuality anddisability is still conducted in Western societies such as the US, UK and Canada(Shuttleworth, 2010). Those studies that do report information from non-Westernsocieties mostly focus on disabled people’s opportunities for marriage, which, whileoften relevant to sexual lives, cannot be considered equivalent to them (Fassin, 1991;Nicolaisen, 1995). Qualitative research attention should especially be drawn to thehigher rates of STDs including HIV/AIDS in developed and especially developingcountries (Groce, 2004, 2005) to enable us to understand the context, meaning andlived implications of these higher figures. Despite the limited cross-cultural research,there is growing evidence that just as in the West, disabled people’s sexuality isdevalued in many non-Western societies; the sexual lives of people with variousimpairments interacting with social institutions such as gender, marriage and class,may be restricted in various ways (Shuttleworth, 2004).

Recently Ingstad (2007) has problematized the concept of universal human rightsand the agenda of the disability rights movement. She argues that cross-culturalresearchers must take into account perspectives within the local context rather thanassuming universal standards for human rights in relation to disabled people. One ofhermain points is that in the developingworldwhere there is often rampant poverty,concepts such as independent living and accommodations for disabled people thatare taken for granted in some Western societies, such as wheelchairs, may not berelevant or at least less immediately important than a more basic concern with thefamily’s economic survival. She further cautions us not to impose forms of individ-ualism onto the interpersonal relations of disabled people and nondisabled people insocieties in which the response to disability may be more familial and communal.While Ingstad’s point is crucial, we would caution against a too hasty assessment ofintegration within a society when further investigation may be warranted andsuggest that an understanding of the dynamics of power relations should also becarried out. Godfrey Kangaude (2007) has examined the human and sexual rightscontexts for disabled people in Malawi. He argues that sexual restrictions areimplied, and in a sense, codified by policy documents and practice contexts,which minimize disabled people’s need for sexual expression and leave it off thedevelopmental agenda. It subsequently becomes a struggle to counter institutionalprecedence.


Sexual Access

Sexual access is a concept that has been employed in recent work and especially lendsitself to an interrogation of the sociopolitical and cultural impediments to disabledpeople’s sexual wellbeing (Hamilton, 2002; O’Toole, 2002; Shuttleworth andMona,2002; Wade, 2002; Grossman, et al., 2004; Kangaude, 2007; Shuttleworth2007a,b).In a broad sense, a research focus on disabled people’s sexual access is concernedwithboth restrictive and inclusive aspects of sexual cultures. In terms of restriction, sexualaccess isnot simplyaboutphysical access tonegotiationcontexts suchasnightclubsbutalso includes aesthetic, psychological, symbolic, and social aspects embedded withintheseandothercontextsofeverydaylifethatworktodenydisabledpeoplesexualdesire,desirability, relationships and wellbeing. Further, a focus on sexual access does notinterrogatedisabledpeople’s sexual restrictions in termsofnormative sexual identities,relations and practices, but can aim at illuminating a more inclusive access to ‘sexualwellbeing’ no matter its attributes/requirements. As Brown and Russell (2005) state,sexualwellbeing is ‘conceptualisedbroadlyas thecapacity toenjoyandcontinuesexualbehaviour in line with a personal and social ethic’ (p. 376).

Opening the concept out in this way, links to heteronormative sexuality aresevered. Of course, queers would experience forms of sexual oppression thatheterosexuals do not and this aspect needs to be accounted for in any analysis(McRuer, 2006). In fact, it matters little how disabled people approach theirsexuality: through culturally sanctioned, heteronormative avenues (e.g. dating,marriage); atypical (e.g. communal, BDSM)3 and queer lifestyles; orways of relatingthat emerge from their diverse socio-bodily situations (e.g. being provided personalcare by a paid assistant during sexual encounters, incorporating spasticity intolovemaking) – thesemodalities can all nurture sexual wellbeing, provided the personcan effectively contend with the specific constellation of barriers (both related toparticular impairments, disability and any relevant intersections) that loom for themin the sexual domain.While this formulationwill likely not satisfy thosewho requirea thorough deconstruction and dissolution of identity intersections in order to‘envision a future in which there are no “dis/abled sexualities”’ (Rembis, 2010:56), it does provide a pragmatic, heuristic device for researchers to gauge the currentsociosexual situations (degree of restriction or access to desired sexual contexts,interpersonal sexual situations, sexual and gender identities, sexual wellbeing and soforth) of people with a range of impairments.

Inclusion of Disabled People as Co-participantsin Research, Writing, and Policy-Making

If we are serious about our role as practitioners with a social justice orientation, weneed to support research, writing and policies that include disabled participants as

3BDSM is a lifestyle and the word ‘is a combination of 3 acronyms, BD for Bondage Discipline, DS for

DominationandSubmissionandSMforSadoMasochistic’ (http://www.aslavesheart.com/dictionary.html).Q3


collaborators, alerting researchers and practitioners to pertinent issues and contrib-uting in important ways to the formulation of sexuality and disability research,policy and practice. Indeed, the critical, emancipatory orientation that lies at the coreof disability studies’ raison d’etre (Barnes, 1992, 2003;Oliver, 1992;Mercer, 2004)Q1 ,and client-centred focus of occupational therapy requires that disabled people’sperspectives must be central to research, policy-making and practice developmentin this area.

An impairment group whose participation in research on their sexual lives hasrarely been elicited is people with communication/learning difficulties such asautism, learning disability, intellectual disability. Much of the research that focuseson this group has been concerned with either sexually inappropriate behaviour andperceived tendency to sexual abuse by men experiencing this condition (Wilsonet al.,2010) or with the vulnerability to sexual abuse of mostly women (but alsosome men) with communication/learning difficulties (McCarthy, 1999). Hollomotz(2010) problematizes these perspectives, showing how the so-called vulnerability tosexual abuse of people with learning difficulties is at least partially constructed bytheir social environment. In short, Hollomotz argues that disempowerment andcontrol in the lives of people with learning difficulties reinforces their sexualvulnerability. Most important is that some of this new research is being morearticulate about how participants contributed to the project (see for example,Garbutt, 2010). We seek to add to the participatory literature in this area throughthe contributions of our autistic co-authors, Hope Block and Jacob Pratt.

Hope and Jacob

Hope Block and Jacob Pratt are autistic adults who met while presenting at regionaland national disability conferences. Both communicate through a formof alternativeand augmentative communication that is referred to in the literature as facilitatedcommunication (FC) or supported typing. This technique involves the need for somelevel of physical contact between the person typing and another supporting indi-vidual to assist with motor planning and initiation difficulties. The technologiesinvolved for this communication style can be as simple as a letter board (which Jacoboften uses) and as complex as a text-to-speech device (which is Hope’s preferredmethod).

When Hope types, her wrist, arm or elbow is in physical contact with the personhelping her. It is not her preferred means to communicate when easier strategies willsuffice, such as body language, vocalizations and personal signs. You can learnmoreabout Hope and her communication strategy by visiting http://www.aina-ri.org/movies/HopeB.htm (Block, 2011). Despite a nerve-wracking fear of a new audi-ence’s disbelief, it is in public performance spaces, such as during conferencepresentations, where she is best able to communicate by typing. She states ‘I don’tsee things like ordinary people and it feels like I’m out of sync with the rest of theworld. I am thought of as not very smart but I am very intelligent. I am awesome atpresenting at conferences, but have trouble with conversations. I don’t know why


that is. It is odd that I have somuch trouble talking to people one to one. Please realizethat it is me typing not my mom. I cannot type yet without support. I am perfectlycapable of my own thoughts.’

Unlike Hope, Jacob has a lot of oral language that is primarily nonfunctional. Nooften means yes and vice versa. When anxious, verbal diarrhoea in the form ofrepetitive but ‘stupid’ (Jacob’s own term) questions abound, like ’tomorrow isSunday?’ when he knows perfectly well it is not. Jacob is also echolalic, repeatingthe last thing he has heard or something hewas forced to repeat years ago in a speechtherapy programme emphasizing oral language. None of this reflects anything at allabout the myriad of thoughts swirling around his brain – thoughts both emotionallycomplex and vocabulary rich. To know this aspect of Jacob requires that he haveaccess to the alphabet in either low or high tech QWERTY (standard keyboardlayout) form with facilitation.

This facilitation involves skilled support for Jacob tobe comfortable because for solong he was viewed as someone who was incompetent intellectually. Feedback alsoneeds to be given to him about continuing to look at the board and to keep going if hegets stuck midword or midsentence. Although Jacob prefers to have his hand tightlygrasped to provide proprioceptive input, he is capable of isolating his own indexfinger, crossingmidline, hitting a letter target accurately, andperformingmanyof theother skills required for supported typing with a hand tourniquetting his shirt abovethe elbow. He corrects misspellings with his nontyping hand, too.

Jacob states ‘Without FC I would be a lost soul. I yearn to be able to type withanyone so everyone can know the depth of my thinking, my spirituality, my feelings,myunderstanding, and somanyother sides ofmy complex self that one can’t possiblyknow without typing with me. Typing does not change the fact that I am and willalways be autistic, and that because of the severity of my autism, I will always flunkthe standardized tests that lead me to be eligible for services provided only to those

Figure 12.1 Jacob and Hope.


with an intellectual disability. Nonetheless, my inability to pass those tests has to dowith performance barriers – the same ones that make fluent and meaningful orallanguage impossible.’

Eventually Hope and Jacob discovered they had feelings for each other. Theybegan dating in late 2009 and became engaged in May 2010. Their first dateconsisted of sitting without support at a table in an exhibit hall at a conferenceand just ‘being.’ On their next date, in early January of 2010, Hope’s staffenthusiastically began suggesting things they could do in the area, since Hope livesin one state and Jacob in a neighbouring one. Hope typed ‘Why do you neurotypicalpeople always have to do something? Why can’t you just be?’

This may be a good time to note that, in the occupation of sexuality andrelationships, intimacy may look very different to people who have various formsof differences in their learning or bodies that lead them to diagnoses of disabilities. Asanother example, BobWilliams (poet, disability rights advocate, and former DeputyAssistant Secretary for Disability, Aging and Long Term Care Policy and Commis-sioner of the federal Administration on Developmental Disabilities in the Office forPlanning and Evaluation in the USDepartment ofHealth andHuman Services undertheClinton administration), wrote a poemabout two people in love in an institution.They silently prayed each day that, when staff laid them on their sides on amat, theywould be positioned so they could face each other and let their eyes speak of theirloves for one another.This is intimacy althoughnot, perhaps, in theway traditionallydefined.

Because of communication and logistical challenges, dating for Jacob and Hopeis complicated. They live several hours drive apart from each other in differentstates, so it is a distance relationship. Even with the support of family membersand service-providing agencies, they do not get to see each other as often as theywould like.

Hope

Love presides and stays alive, forever. It really speaks your heart.Without support I

would never see my awesome but noisy, respectfully, handsomely, brilliant, kind

and funny JacobPratt.Very necessary to bewithmy love . . . Somehow, somewhere,

someway. Prettywallflower finally has her dream.This is great . . . I am thankful for

this chance. Need less reason and some awesomeness.

I love being engaged but I wishwe could getmarried soon. It is so hard to be apart. I

have another wish. Really want to just be understanding about Jacob’s need to get

his [undergraduate] degree first. I am so impatient. First we need a place to live and

figure out the funding. We need help with [my and Pam’s] father being so worried,

and mom bringing me all the time to meet Jacob. It is hard for mom to drive long

distances. It isweird to have yourmother ondates.We can’t findpeople to typewith

both of us except Linda and she is so busy. I want so much to be a wife and be with

my love always. Being engaged is fun but being together as man and wife would be

somuch better. Really hard to be so far apart.We love each other somuch andwish

it weren’t so hard to figure things out.


Jacob

I can’t believe I finally found love. I am experiencing all new feelings that others

have spoken about but I could only imagine. Shakespeare, the bible, modern

day poets, all havewritten about thiswonderful thing called love. They understated

the feelings. I can’t use words to describe the awesome and overwhelming feelings

that overcome my mind and heart and soul but, believe me, this is the way I

imagine HEAVEN WOULD BE LIKE. THE ONLY DIFFERENCE IS THAT

LOVE IS GOD’S GRACE AND NOT THE SAME AS LOVING ANOTHER

MORTAL INWHOM THE HOLY SPIRIT LIVES. I am so blessed that love is in

my life.

Supported dating is wonderful but it also sucks. The way it is wonderful is we have

staff who are cool about our dating and our parents are too. Kind of like having

approval for having a friend who your family accepts as one of its members. It

allows us to see each other, because neither of us can drive or use the phone to

arrange dates or even get ourselves to where we want to be. Supported dating in an

ideal world wouldn’t be necessary, but when you have severe movement, anxiety,

communication and sensory differences (Rammler, 2007)Q2 resulting in a label of

autism it is the only option for us to have the opportunity to be together.

Supported dating sucks because you are totally dependent onothers to be together.Self-determination can only go so far before reality strikes. Reality includes staffthinking it is okay to cancel, or run late, or break up your plans to suit themselves.There is not a thing you can do except get frustrated, and take it out on yourselfthrough self-inflicted pain inducing bites or head bangs, because if you don’t do it toyourself you will be called aggressive and punished for being so deeply disappointedthat your heart is breaking, but the outcome is worse because the punishment isanother postponement.

Read Linda’s respectful rules (abbreviated as an appendix). It is important foranyone providing supported dating supports to realize it’s hard enough, and notmake it worse by imposing their agenda on us. I wish everyone love and if you havesevere autism Iwish you the chance to fall and be in love. And I pray youwill have thesupports you need to get to where you want to be in your relationship with thatspecial someone.

Final Thoughts

At the moment, intimacy for both Hope and Jacob involves facilitated communi-cation to let each other know how much they love each other and why. They alsodiscuss their futures, their current lives (e.g., college courses both took recently) and,like any other couple, may complain to each other (e.g., about the slowness of a waitunit in a restaurant).Neither has expressed any interest in physical contact except foran occasional kiss on the cheek or hug. They often choose to sit near but not next toeach other. Yet, as they communicate from their hearts, it is challenging for those


supporting them to ‘be a fly on the wall’ and to rise above feeling like a voyeur so asnot to convey personal discomfort toHope and Jacob thatmay limit their freedomofexpression.Without support from others, such communication on their parts wouldbe impossible. Thus their situation highlights the realities of facilitated sexuality asdiscussed earlier. Though the facilitation that Hope and Jacob require is, at present,on the level of logistical planning, transportation and communication, rather thansexual activities, it is already a delicate negotiation that redefines traditional notionsof intimacy.

Greater levels of intimacy, particularly in the sexual arena, comprise bridges thatboth Hope and Jacob, their families, and other members of their support teams mayhave to cross eventually. It will be important for others involved in their lives to do sononjudgmentally and in full support ofwhat Jacob andHope, as the involved couple,want. Resources such as DaveHingsburger’s (1990) I Contact: Sexuality and PeoplewithDevelopmental Disabilitiesmay prove to be required reading for all concerned.

Another issue that has arisen is howsoonHope and Jacob actuallymaybemarried.If Jacob’s religious orientation allowed it, he may well be amenable to living withHope as though they were married. This would render the politics of interstatefunding, reduced Social Security benefits to married couples, and other systemiclogistics unnecessary. Unfortunately for Hope, Jacob believes that to do so woulddishonour her. Therefore, he intends, as one of his independent study projects whilehe earns his Baccalaureate degree, to take on the system. In contrast, Hope’seagerness for the two of them to be together, and her personal lack of religiousprohibitions, creates another level of negotiation for the couple. The take-homelesson here is that other issues beyond disability (e.g., personal values, life plans,preferences) can also intrude on sexuality and intimacy among disabled people asmuch as these issues affect individuals who are not disabled.

On top of negotiating practical, logistical, financial, and religious barriers, Hopeand Jacobmust face prejudice, discrimination, pejorative attitudes and behaviour inignorant people in the community. Recently, as Jacob and Hope sat on a bench in amall on a date – their facilitators dismissed andwatching at a distance – they had thedispleasure to hear a nearby man talking on his cell phone, passionately expoundingthat, ‘leaving two retards alone together should be illegal.’ This sort of hurtfulencounter may turn out the hardest of all barriers to dismiss or overcome.

Occupational therapists arewell qualified, and inmost cases,well disposed to helppeople to negotiate this challenging terrain. It is the responsibility of educators toensure that students receive a balanced and thorough preparation that goes beyondthe physiological aspects of sex to explore emotional and cultural issues thatinfluence the occupations of sex, sexuality and intimacy. We strongly suggest thatresearch and scholarship engaging with these topics include the perspectives andactive participation of disabled people. Hope and Jacob’s experiences reveal hownecessary it is to consider individual perspectives, backgrounds and desires withregard to these occupations. There are no simple answers, no cookie-cutter solutions;each situation must be approached with equal measures of respect, empathy, andcreativity. On the level of policy and practice, especially in institutional settings or inhelping individuals negotiate with their families, occupational therapists have


the potential to play a valuable role as advocates and facilitators to help ensureoccupational justice – that the rights, needs, and desires of disabled people arerepresented and respected. In some cases, it might be necessary to fight entrenchedand repressive attitudes and policies that are decades old, if not older. Ignorance andprejudice, such as Hope and Jacob experienced at the mall, is perhaps the hardest toaddress and change of all the barriers discussed here. What cultural and policychangesmust take place, andwhat roles should occupational therapists play, in orderto work toward occupational justice in this realm, and a world where suchexperiences no longer happen? These are the questions we should be asking ourstudents, our authority figures, and ourselves.

Appendix

An abbreviated version of the ‘support staff training guidelines’ used primarily toinstruct Jacob’s staff on how to support his dating follows. Often, dates involvefamily members because the logistics of coordination given other assignments,scheduled work hours, and a myriad of other factors. Another individual with adisability who is able to travel independently may accompany Hope in the nearfuture as the ‘lovebirds’ take the Shoreline train tomeet each other at amidwaypoint.Fortunately, bothHope and Jacob love trains and this line is reasonably accessible toboth of them.

Supported DatingIndividualized for Jacob and HopeALWAYSREVIEWTHEENTIRECONTENTSUNTIL SUPPORTEDDATING IS

WELL-ESTABLISHED

Important numbers to have:JACOB’s contact informationHOPE’s contact information

NOTE: Both Jacob andHope have facebook pages. They can ‘live chat’ or send eachother messages that way, too.

Planning& Suggest dates/times that aremutually convenient for Jacob, Hope, andwhoever is

available to support each of them.& Make sure Hope and/or Jacob don’t have other commitments. (Ask them first,

then check their calendars with them.)& If either does have something else scheduled, let that person choose whether to

maintain the commitment or see each other instead.T If they choose to see each other anyway, continue. This may require:

&Notifying whatever entity was expecting either one of them to reschedule, letthem know s/he won’t be there, etc. The responsibility for Jacob’s cancellations


falls on Jacob’s support staff or others and the responsibility for Hope’s falls onher staff/others.& Making sure other members of each team know of the change.

T If one chooses not to see other and do whatever was originally planned instead,pick another date with each of them. Start this process over. (NOTE: Try tonegotiate with them if the event to be missed affects health, safety, or otherimportant life functions. Even if it does, it is still their choice.)

&Ask themwhat they want to do on the date. Use facilitated communication. Theymay have already communicated with each other about what they’d like to do,have new ideas, or be responsive to suggestions you offer. Support their negotia-tions as they jointly decide what to do. (In reality, it is often Jacob whomakes therecommendation and Hope who agrees! Dates are often planned via emails.)

& Review the specific steps for planning dates at specific times.

It isNOTup to staff tomake decisions based onwhat theywant to do.We are all hereto support Hope and Jacob lead their lives as they choose!

Additional planning for late afternoon (after 3 p.m.), evening, weekend dates

NOTE: It is really far to Hope’s place but late afternoon, evening and/or weekenddates should still be planned if that is what Jacob and Hope want.

&Allow enough time for Hope and Jacob with their respective support to get to themeeting place before setting a meeting time.

&BothHope and Jacob need rides back home so, given the distance, it is usually bestto plan on both sets of support staffs to stick around. In fact, double or triple dateswork well!

& Confirm the date, time and place right before the actual date. Do this the nightbefore or morning. (Note that Hope’s home support staff members do not workduring the day all the time.)T Make sure all support staff who will be involved in supporting the date haveeach others’ phone number in case eitherHope or Jacob are sick or there is anothercompelling reason to reschedule.T Compelling reasons to reschedule include serious weather, serious staff illness,lack of transportation at the last minute (e.g., breakdowns, accidents).

Set dates are NEVER to be canceled/rescheduled for the convenience of staff.Support on datesBring extra money just in case Jacob or Hope do not have enough. Get a receipt so

you can be reimbursed.Make sure you have enough gas in your vehicle before thedate. It will be okay to stop and get gas on yourway back homewith Jacob as longas you tell him you have to do this.

Remember what Hope said as this is paraphrased: ‘You neurotypical people have aneed to do whereas we autistic people are okay to be.’

Remember, it is THEIR date, not yours!!!


& Bring Jacob’s letterboard and Lightwriter with the plug. Make sure Hope hasher Dynavox. Both of them can type on a letterboard so bring a back up just incase.& Bring something for each of them to use for proprioceptive input.& Let Hope and Jacob change plans at the last second if they want. Use facilitatedcommunication.& Avoid traffic if at all possible while going on the date.& Don’t rush.& Allow them to choose their seats. Allow them to change their minds aboutwhere they’re sitting. Remember that what Jacob says may be unreliable soALWAYS use facilitated communication to confirm.& If you are there with your significant other, confirm with Hope and Jacobwhether they want you to sit with them or if they’d rather sit by themselves.& Be available to facilitate their communication, however.& If you are at a restaurant or another place where Hope and Jacob need tocommunicate with other staff, ask if either of them want assistance ordering andhow theywould like that assistance to be provided. Follow their instructions. Youwork for them!& Be ready to support any other issues that may arise (e.g., by explaining noises,movement differences, anxiety, sensory needs) to others nearby.&Hope and Jacob have a right to be anywhere in public. They do not have a rightto disrupt others’ peaceful access to those places and, if either one continues to doso, it may be appropriate to leave (at least for a sensory break).&There is a fine line between honoring Jacob’s andHope’s right to be presentwiththeir autism and them truly disrupting others’ rights. Here are some guidelines tohelp you decide:T If it is merely a case of someone else being judgmental, remember Hope’s and

Jacob’s right to be there. It is okay to point this out gently.T If someone actually says something rude to themor you, tell themyou’re sorry

they were ‘bothered’ and ignore them.T If someone has been interrupted or annoyed, apologize in addition to Jacob’s

verbal apology (one of his aspects of perseverative speech is to say ‘I sorry’ if heperceives someone to be upset with him) and explain brieflywhat autism is. Try tohelp the person understand that this is not intentional.T If someone has been hit or otherwise aggressed against, make sure they are

okay. Be prepared to exchange information unless the person is certain thateverything is okay.T If the environment is too noisy, at least take a sensory break. This is reason to

leave if Hope and Jacob want to.TTreat other incidents (e.g., spilled glass of water, spilled popcorn, need to use

the restroom, or other events) as you would for anyone else. Deal with it!T Leave if Jacob or Hope want to leave. Don’t drag it out ‘just because the date

isn’t supposed to be over.’& In a really difficult situation involving authority figures, feel free to call anothermember of Jacob’s or Hope’s team for advice.


& If Jacob andHopewant to extend their date, and it is possible to do so, go ahead.Just make sure everyone else knows so they are not ‘missing!’& If it is not possible, negotiate with them about why not and what to do instead.Use facilitated communication.

HAVE FUN!!!!

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Author Query1. This isn’t in the references. Please insert full details in the references section.

2. Is this citation part of Jacob’s narrative (which I’ve assumed to be a direct quote,largely because Hope’s section before it contained ellipses and material insquare brackets, which strongly suggested quoted material) or was it insertedinto it? In the latter case the citation should be in square brackets (as ininsertions into Hope’s section).

3. access date? Please supply.

4. I have amended this to the style used earlier in the manuscript. Please checkthat this is OK.

5. I haveassumed that you intended this to bevolume28, pages 51 to 60, althoughthiswas not entirely clear in the original, and I’ve rewritten it on that assumption.Please check that it was, in fact, what you meant.

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Disability, Sexuality and Intimacy