The Role of the Ethicist in Sexual Enablement

By Kevin Reel, ethicist and OT working in Toronto. Canada

Kevin-Reel

Sex and ethics. The pairing of those words together can inspire an infinite array of responses. Ethics is about what is ‘right’ and ‘wrong’. Sex is considered ‘right’ or ‘wrong’ for many reasons in different contexts. The question is which of these responses do we consider when it comes to deciding about the ethics of enabling sex?

For an ethicist who supports healthcare providers and their clients (in Canada we use the term ‘practicing healthcare ethicist’ to identify this type of role), the challenge is how to respect everyone’s response as far as is possible…and enable others to do so as well.

The trouble with sex is that it’s always so thoroughly wrapped up in morals – personal positions on matters to do with right and wrong. Like other moral ideas, these notions have been instilled in us from a very early age. Sex also intersects with extraordinarily intense emotions.

Layered with this is ethics – a broader set of ideas or norms that prevail across a community or society. Ethics frames what is ‘right’ and, along with the law, ethics considers what ought to be ‘rights’ within certain limits. Where sex is involved, ethics speaks to issues of autonomy, liberty, equality, freedom from harm and maximizing of benefits. It also speaks to respectful relationships, transparency, duties to others and recognition of public and private domains.

Exploring the preconceived ideas we hold, their roots in our personal moral values and the limits to which we can apply them is usually difficult and often uncomfortable work. But it is essential if we are to work in a way that is client-centred, and if we are to help clients live as they wish, as fully as they can. This is where ethics, and practicing healthcare ethicists, can be of some help.

Ethics and ethicists can be critical to thinking through the practice standards and guidelines and the organizational policies and procedures that guide the work of those who support people with disabilities to live their lives. No matter the practice context – inpatient or outpatient, acute or rehabilitation, school or work, shared residential or individual home based – dimension of sexuality and sexual expression can arise.

  • Should staff provide printed erotic material for someone who cannot easily obtain it on their own?
  • How should relationships in a shared residential context be addressed?
  • What differences would this present in a residential high school versus a university campus or a retirement home?
  • What if the individuals involved have physical limitations that require assistance to get naked and get close enough for intimacy?
  • Who then takes care of ‘the cuddle puddle’?
  • Are these considerations different when the ‘sex’ is part of a ‘relationship’ versus when it is expressly ‘recreational’?
  • How do we navigate a situation where there are cognitive limitations – when is consent valid?
  • Do we respond differently if it is happening in the midst of other ‘spousal’ contexts – if an individual is part of one relationship but engaging in another as well?
  • Does anything change if we know or suspect one someone is a paid sex worker visiting a client?
  • And what if we believe there is some sort of emotional or even physical harm arising from a sexual partnership?
  • Do our own responses carry any relevance? How much, to what extent?

The questions can be endless. So, too, can be the responses. Achieving consistent responses from all involved is an elusive ideal. To get close to this goal, decisions and actions must be based primarily on shared ethical (and legal) norms, rather than on personal moral and emotional reactions.

It may well be the case, at times, that those shared norms are actually too restrictive – and advocacy becomes an additional imperative. Think here of the ways in which some ‘norms’ have evolved in many societies over time – homosexuality has been removed form the list of psychiatric disorders, gender identity is seen very differently, paid sex work is still criminalized in some societies but not others.

Ethics and ethicists in practice can support the work of creating a just approach to enabling sexuality and sexual expression. This often begins with crafting policies and procedures that are grounded in respect for individual choice. Exploring personal values, clarifying the law and reviewing applicable professional standards can help with much of the unease that can be associated with involvement in the sex lives of others. From there, ongoing support and education can foster better understanding of the reasoning and rights underpinning what might still feel uncomfortable for some. Finally, facilitating communication among those involved can help highlight the shared goals and roles of those who may appear to have differing opinions.

Where people can manage to truly think through their own moral and emotional responses to issues of sexuality and sexual expression, it bodes well for their ability to engage with other ethical issues that prompt similarly intense reactions – such as the use of drugs and assisted dying. Becoming able to identify emotive responses and consider more rational and reasoned responses is a critical skill for providing person-centred support services, just as it is essential to creating a civil pluralist society.

A practicing healthcare ethicist1 typically helps people explore what they think is right and why, and how to work respectfully with others whose ideas of right and wrong might differ. In the realm of enabling sexually fulfilling lives, this can mean more person-centred practice and less moral distress.

The role of the Ethicist in sexual enablement

Sex and ethics. The pairing of those words together can inspire an infinite array of responses. Ethics is about what is ‘right’ and ‘wrong’. Sex is considered ‘right’ or ‘wrong’ for many reasons in different contexts. The question is which of these responses do we consider when it comes to deciding about the ethics of enabling sex?

For an ethicist who supports healthcare providers and their clients (in Canada we use the term ‘practicing healthcare ethicist’ to identify this type of role), the challenge is how to respect everyone’s response as far as is possible…and enable others to do so as well.

The trouble with sex is that it’s always so thoroughly wrapped up in morals – personal positions on matters to do with right and wrong. Like other moral ideas, these notions have been instilled in us from a very early age. Sex also intersects with extraordinarily intense emotions.

Layered with this is ethics – a broader set of ideas or norms that prevail across a community or society. Ethics frames what is ‘right’ and, along with the law, ethics considers what ought to be ‘rights’ within certain limits. Where sex is involved, ethics speaks to issues of autonomy, liberty, equality, freedom from harm and maximizing of benefits. It also speaks to respectful relationships, transparency, duties to others and recognition of public and private domains.

Exploring the preconceived ideas we hold, their roots in our personal moral values and the limits to which we can apply them is usually difficult and often uncomfortable work. But it is essential if we are to work in a way that is client-centred, and if we are to help clients live as they wish, as fully as they can. This is where ethics, and practicing healthcare ethicists, can be of some help.

Ethics and ethicists can be critical to thinking through the practice standards and guidelines and the organizational policies and procedures that guide the work of those who support people with disabilities to live their lives. No matter the practice context – inpatient or outpatient, acute or rehabilitation, school or work, shared residential or individual home based – dimension of sexuality and sexual expression can arise.

  • Should staff provide printed erotic material for someone who cannot easily obtain it on their own?
  • How should relationships in a shared residential context be addressed?
  • What differences would this present in a residential high school versus a university campus or a retirement home?
  • What if the individuals involved have physical limitations that require assistance to get naked and get close enough for intimacy?
  • Who then takes care of ‘the cuddle puddle’?
  • Are these considerations different when the ‘sex’ is part of a ‘relationship’ versus when it is expressly ‘recreational’?
  • How do we navigate a situation where there are cognitive limitations – when is consent valid?
  • Do we respond differently if it is happening in the midst of other ‘spousal’ contexts – if an individual is part of one relationship but engaging in another as well?
  • Does anything change if we know or suspect one someone is a paid sex worker visiting a client?
  • And what if we believe there is some sort of emotional or even physical harm arising from a sexual partnership?
  • Do our own responses carry any relevance? How much, to what extent?

The questions can be endless. So, too, can be the responses. Achieving consistent responses from all involved is an elusive ideal. To get close to this goal, decisions and actions must be based primarily on shared ethical (and legal) norms, rather than on personal moral and emotional reactions.

It may well be the case, at times, that those shared norms are actually too restrictive – and advocacy becomes an additional imperative. Think here of the ways in which some ‘norms’ have evolved in many societies over time – homosexuality has been removed form the list of psychiatric disorders, gender identity is seen very differently, paid sex work is still criminalized in some societies but not others.

Ethics and ethicists in practice can support the work of creating a just approach to enabling sexuality and sexual expression. This often begins with crafting policies and procedures that are grounded in respect for individual choice. Exploring personal values, clarifying the law and reviewing applicable professional standards can help with much of the unease that can be associated with involvement in the sex lives of others. From there, ongoing support and education can foster better understanding of the reasoning and rights underpinning what might still feel uncomfortable for some. Finally, facilitating communication among those involved can help highlight the shared goals and roles of those who may appear to have differing opinions.

Where people can manage to truly think through their own moral and emotional responses to issues of sexuality and sexual expression, it bodes well for their ability to engage with other ethical issues that prompt similarly intense reactions – such as the use of drugs and assisted dying. Becoming able to identify emotive responses and consider more rational and reasoned responses is a critical skill for providing person-centred support services, just as it is essential to creating a civil pluralist society.

A practicing healthcare ethicist1 typically helps people explore what they think is right and why, and how to work respectfully with others whose ideas of right and wrong might differ. In the realm of enabling sexually fulfilling lives, this can mean more person-centred practice and less moral distress.

By Kevin Reel, ethicist and OT working in Toronto. Canada

Untitled

Sexuality & Little People (LP),

Dwarfism, Short Stature,

and People With Disabilities (PWD)

Bridging the Gap: From Limitations to Fulfilling Your Desires

Dr. Marylou Naccarato,ACS,CSE

Board certified clinical sexologistMarylou 2

AASECT Certified sexuality educator

Consultant – Speaker – Life Coach

Web: www.DrMarylou.com

Email: ask@DrMarylou.com

Twitter: @DrMarylouCS

#EmbracingOurUniqueBodyTypes

Facebook: facebook.com/Dr.Marylou

I accept my body as imperfect. It gives me breath and gives me life.

What matters most is how I carry myself, not how my body carries me.”

– Dr. Marylou

Sensuality & Intimacy for Little People, Disabilities, Medical Conditions, and Unique Body Types”

My career as a sexuality educator began when I pioneered an individualized sexuality enhancement education program titled “Heighten Your Sensuality and Intimacy.”

This workshop, first presented at Little People of America conference, was designed to meet the unique needs of Little People (ie: dwarfism) and people with disabilities. I introduced creative techniques, sex positions, and a variety of adult devices that are suited to our range of mobility, to achieve optimal fulfillment in sexual expression and pleasure. In addition to Little People, I work with all disabilities, medical conditions, and unique body types.

Standing a statuesque 3’11” I draw from my formal education and life experiences as a person of short stature who understands our challenges. Over the years, I have had hundreds consultations with Little People and PWD who expressed their resounding testimonial support and a need for more quality sexuality content education. I have also conducted educational sexuality and disability trainings for students and professional clinicians in the fields of sexology, sex therapy, and physical rehabilitation.

I am a certified clinical sexologist with the American College of Sexologist (ACS), and a certified sexuality educator with the American Association of Sexuality Educators, Counselors, & Therapist (AASECT). I attained a BA from California State University, Northridge in sociology – emphasis in counseling & Interviewing, and doctorate in Human Sexuality (DHS) from the Institute for the Advanced Study in Human Sexuality.

I am a member of the Society for the Scientific Study of Sexuality (SSSS) and AASECT; a lifetime member of Little People of America (LPA), and was the former president of the Kniest SED Group (KSG), a dwarfism organization benefiting persons like myself living with Kniest Syndrome and SED related conditions, and their families.

If you would like to see me in action, I was featured in a mini-doc of my work on WE tv – “Secret Lives of Women.” The two video links are below, or go directly to my website for the radio and tv appearances: http://drmarylou.com/media.html

Video #1 of Dr. Marylou – Sex Educator This portion of the show covers her work as a sex educator including a mini-workshop and review of her favorite toys!

https://youtu.be/Arflol8Cvbk

Video #2 of Dr. Marylou – Sex Educator/Living with Short Stature and Her Personal Life

https://youtu.be/aUJ7a7OGI8U

Little People Defined

Little People of America (LPA) www.lpaonline.org defines dwarfism as a medical or genetic condition that usually results in an adult height of 4’10” or shorter, among both men and women, although in some cases a person with a dwarfing condition may be slightly taller than that. The average height of an adult with dwarfism is 4’0, but typical heights range from 2’8 to 4’8. Short stature is generally caused by one of the more than 200 medical conditions known as dwarfism.

Dwarf Specific Sites

Below, taken in part from http://www.lpaonline.org/dwarfism-support-organizations

are several dwarf specific sites online that may be helpful in understanding the medical issues. This list is not inclusive. I suggest you do a Google search with your type of dwarfism diagnosis and educate yourself on the medical implication of your condition. Little People (LP) are considered people with disabilities (PWD). I will use the two distinctions LP and PWD interchangeably at times since there are so many overlaps that apply to both communities.

Association for Children with Russell-Silver Syndrome, Inc.
National Mucopolysaccharidoses (MPS) Society
Osteogenesis Imperfecta Foundation
Turner Syndrome Society of the United States
Turner’s Syndrome Society of Canada
Diastrophic Dysplasia
Morquio Support Group
MPS Forum

Kniest SED Group

Youth Support Group for SED/Kniest
Progeria Research Foundation
Primordial Dwarfism
Potentials Foundation
Rhizomelic Chondrodysplasia Punctata

International Little People Organization Resources

There are many international organizations for Little People. Below is a list from the Little People of America website: http://www.lpaonline.org/dwarfism-support-organizations.

Please email me at: ask@drmarylou.com if you would like for me to speak at your organization meeting regarding Little People, Disability, Sexuality, Relationships, and Life Strategies. I will design an entertaining individualized Sexuality Education program to meet the needs of your group!

     Argentina Facundo Rojas Nendive
     Australia Short Statured People of Australia
     Austria BKMF Austria
     Bulgaria Little People of Bulgaria
     Canada Association of Little People of Alberta
     Canada Association québécoise des personnes de petite taille
     Canada Little People of Ontario
     Canada Little People of British Columbia
     Canada Little People of Manitoba
     Columbia Little People of Columbia
     Costa Rica Asociacion Pro Gente Pequeña de Costa Rica
     Czech Association of Little People of Czech Republic
     Denmark Little People of Denmark
     England/UK Restricted Growth Association and Little People UK
     Finland Lyhytkasvuiset-Kortväxta ry
     France  Association of People Small Size and Facebook Group
     Germany BundesselbsthilfeVerband Kleinwüchsiger Menschen e.V.
     Germany Bundesverband Kleinwüchsige Menschen und ihre Familien e.V. BKMF
     Holland Belangenvereniging Van Kleine Mensen
     Hungary Little People of Hungary
     Italy AISAC Onlus
     Iraq Short Stature People of Iraqi
     Ireland Little People of Ireland
     Japan Glory to Achondroplasia
     Kenya Little People of Kenya
     Kosovo Little People of Kosovo
     Malaysia Little People Welfare Organization of Malaysia
     New Zealand Little People of New Zealand
     Norway Little People of Norway (NiK)
     Philippines Little People of Philippines
     Poland Little People of Poland  Facebook group
     Portugal ANDO Portugal
     Russia
     Scotland Short Stature Scotland
     Slovakia Little People of Slovakia
     Slovenia Little People of Slovenia (Drustvo Malih Ljudi Slovenije)
     South Africa Little People of South Africa
ospd@leg.ncape.gov.za
    South Korea Little People of South Korea
     Sweden   Association for People of Short Stature in Sweden
     Switzerland Little People of Switzerland
     Spain Asociación Nacional Para Problemos de Crecimeinto
     Spain Fundación ALPE 
     Uganda Little People of Uganda

United States Little People Of America – LPA

Skip the Performance!

It is important to note that intimacy does not always mean intercourse and orgasm. You can have a very passionate and erotic experience with or without intercourse and/or orgasm either alone or with your partner. Our limited range of mobility offers a wonderful opportunity to dialogue with your partner about what is pleasurable to each other and to discover new ways of giving pleasure. Ultimately, the real sensual experience is the heightened emotional connection and intimate bonding that you create with each other.

Since so many Little People live with physically challenging conditions, my goal is to reveal distinctive trends in the sex profile of this population and to raise interesting questions for discussion and resolutions. I also hope to identify limiting issues that may inhibit sexual satisfaction, so we can address ways to increase the overall sexual enjoyment and pleasure potential for Little People and PWD.

One of the most challenging issues for Little People is the ability to reach their own genitals with-out the use of assistive devices. This is most prevalent in certain types of short stature than in other types of short stature. What is most promising is that in my conversations with the hundreds Little People who could not reach their genitals, a majority felt it that sex was very important. This is so critical, because it tells me that Little People do want more satisfaction in their sex life even if they are physically limited; and are open receptors for change and education. I believe this is true for most PWD, and people with medical conditions and unique body types.

My goal is to research, understand, and teach how we can empower
our sexual health in spite of the medical and social challenges
we experience during our lifetime.”

-Dr. Marylou

What are your Disabilities?

Little People are considered people with disabilities. Like other PWD, many have mild to severe medical complications such as orthopedic issues, malformed bones, spinal stenosis, neuro-muscular issues, arthritis, hearing/vision/speech Impairments, mobility Impairment, and chronic pain.

Common physical limitations of dwarfism/and other disabilities – reaching genitals comfortably, range of motion limitations, mobility issues in hips, arms, legs. Can’t straddle, chronic pain, fatigue. Constant stages of pain, in different parts of body new/old while managing activities of daily living (ADL.)

Definition of Disability

Medical impairments, the social construction of disability, and environmental Barriers are all factors in how we adapt and live with a disability. I believe that we are all disabled one way or another. It’s matter of degree and it’s visibility/non-visibility.

Don’t we all have limitations in some way?

How do we define ourselves in the language/words we use?

The World Health Organization has an interesting perspective in the definition of disability we can all relate to: http://www.who.int/topics/disabilities/en/

says it’s an umbrella term covering 3 parts:

An Impairment – is a problem in body function or structure

An Activity Limitation is a difficulty encountered by an individual in executing a task or action;

A Participation Restriction – is a problem experienced by an individual in involvement in life situations.

Disability is not just a health problem. It is a complex phenomenon, reflecting the interaction between features of a person’s body and features of the society in which he or she lives.

Overcoming the difficulties faced by people with disabilities requires interventions to remove environmental and social barriers.

Disability Affects Sexual Expression

Identity/Expression/Attraction/Biological Sex – Do You Know Yourself…Inside and Out?

Here is a cool guide in exploring non-binary gender and sexuality in relation to your range of “male-ness” to “female-ness with gender identity, gender expression, biological sex, and sexual attraction: The Genderbread Person

http://itspronouncedmetrosexual.com/2015/03/the-genderbread-person-v3/

Many Little People, and people with disabilities do NOT have an affect on identity, attraction, and sexual response i.e. excitement, desires and orgasms. BUT sadly disability may affect sexual expression. For example, one may not feel safe/or or be allowed to express self and what is wanted/desired because of family and/or societal restrictions and acceptance because of their disability.

Another factor is that a person with a disability may not be viewed as sexual beings or desired by others. Disability could be depicted in a more normalized sexual way in mainstream media and film to help improve this situation. We can all contribute to create safe spaces of acceptance for PWD of all expression and gender identities. If you are living with a disability, be brave, safe, and have fun!

There are many sexuality products that are conducive for people with disabilities and short stature. Check out my website for ideas: http://drmarylou.com/products.html