SEXUALITY AND DISABILITY (SNOW E-jounal).

By Onyii Udegbe.

In living with a disability the healthy expression of sexuality can become complicated by many different factors such as uninformed societal views, insensitive family members and the internalization of false and harmful messages about sex and sexuality.

The expression of a healthy sexuality for someone living with a disability requires a complete embrace and loving affirmation of ones own body in order to fully embrace desire. The harmonious embrace of ones body and desire in a healthy expression of the sexual is a necessary, lifelong journey filled with learning and at times can be difficult.

In my life I have come to find that my sexuality is intimately linked to my body. The experiences that I have lived through in this body, my body image and my understanding of how my body is received by the people around me have all greatly contributed to the manifested expression of my sexuality.

Most influential on my body image and consequently the expression of my sexuality is how much power I feel I can exert over the impression that I make on people. The ability to powerfully present myself socially and sexually has proven difficult as I sit with the implications of living in a hostile and ableist society. Thus leaving me with the impression that there is very little room for me to maneuver and exert control over how I choose to present myself in any given situation. However it has been crucial for my well being to find and navigate that little space where I can find power in the choice to present myself powerfully. In doing so, I actively engage with how society understands who I am supposed to be.[1]

As part of this lifelong journey persons living with a disability need to engage with the stories that revolve around their sexuality and ability and find a way to write themselves as heroines of the story. For example in my teens, on finding out that by virtue of my disability I was inevitably classified as freaky, abnormal and deformed, I chose to begin to actively self identify as freaky, deformed and abnormal much to the surprise and chagrin of those whose intentions it was to hurt with those words as in claiming them for myself I had rendered them toothless. In understanding and naming my body simply as it should be, I have felt less alienated from my own body and from the language used to describe my body. Thus affording me familiarity, comfort and some ease with the healthy and powerful expression of my sexual self.

From before a person who lives with a disability is born, even in the womb, the story begins. Whether or not a person, who lives with a disability, will “fully” taste life is in question. Giving birth to a child with a “birth defect” is often a conscious one on the part of the parent and not all of these children get a chance to taste life. If they are to live, then how exactly they shall do so will be evaluated, judged and interpreted by what the parents, community and society understands as normal and natural. That is, after a child with a disability is born, the question on everyone’s mind is if they will “succeed” in life. How much will they suffer?The underlying assumption being that perhaps life is too much for the poor, helpless one living with a disability.

From the very beginning a child, already marked with “birth defect” will be forced to negotiate how it is that they fit into what is defined in society as normal and natural and therefore desirable. From birth, as a child living with a disability I was undesired by those to whom I was born to and henceforth my body, declared by all who are normal and privileged as the temporarily able bodied, as undesirable. As I child I was told that my body was a “defect”, a misfortune, to be conquered and overcome. My sense of self and presentation of my self was alienated from my body and therefore not grounded my bodily-lived reality.

This undesirability and resulting alienation from one’s body will clearly affect the quality of life of someone living with a disability, with telling ramifications on how they will choose to express their desire and sexual selves. Desire and the expression of a healthy sexuality of the differently abled in society has been seen and still is seen today as abnormal, perverted and unnatural. It is seen as deviant, inconceivable, exploitative or simply a monstrosity. Why? because the idea of people with a disability having sex, engaging in a healthy sexual relationship is thought of as too freaky. Because a healthy sex life is for ”Normal humans” only. Why would two “disabledmonsters” procreate? They would have “little monsters” running around! In order for persons with a disability to have ‘normal’ and healthy sexual relationships they would first of all have to be understood as humans capable and worthy of desire.

The expression of desire among persons living with a disability blatantly defies the illusion that sex and sexuality is ultimately about procreation as opposed to the basic human right to sex and feeling healthy sexual pleasure. Differently abled expression of healthy sexual desire also exposes the heterosexist idea that persons living with a disability are without desires as well as undesirable. This expression of desire among persons living with a disability blatantly defies the illusion that sex and sexuality is ultimately about procreation as opposed to the human right to sex and feeling healthy sexual pleasure. This is the inhumane logic that has informed the continued forced sterilization, institutionalization and medicalization of people living with disabilities. They steal and kill our babies, mutilate our bodies, imprison us, define us as crazy and lock us away in closets, fancy houses, hospitals, mental health institutions to prove and ingrain it into our heads that we are strange monstrosities.

This inherent undesirability of people living with a disability informs the general perception that people living with disabilities are asexual, pitiful victims or freaks in danger of running wild and out of control. This story of sexual undesirability is dangerous and toxic for a person living with a disability and for society. This conception of persons living with a disability must be deconstructed and broken down, and rewritten so that the sexual expression for persons living with a disability is central, unexploited and a basic human right. For remaining unchallenged this perception becomes toxic as it is internalized, force fed down our throats, until it is fully digested and deeply internalized. To compound the situation there is little societal support for this kind of work for those already on or willing to embark this journey.

This supposed undesirability of people living with a disability can serve as a source for negative messages for the parents and caregivers of children living with a disability. Where the parents and caregivers ultimately perceive the child as undesirable, and unattractive, often resulting in a denial of the desire and healthy sexuality of a person living with a disability. Instead of understanding a child or student living with a disability as a sexual being, it is easier and more likely that will be understood as vulnerable, as a perpetrator and or victim of sexual assault, exploitation and abuse.[2]

This convenient belief that a person living with a disability is more likely to experience sexual abuse or exploitation can hinder and deny access to crucial information and education about sex, desire and sexuality. If the appropriate sexual health information and education is withheld on the basis of this fear, parents and caregivers run this risk of rendering people living with a disability highly vulnerable to incidents of potentially unsafe and dangerous sexual situations. And therefore manifesting societies belief that people living with a disability cannot be in charge of their own body and sexual selves.

It is of the utmost importance that parents and caregivers understand people living with disabilities as sexual beings with real compulsions, curiousities and healthy, sexual desires. It is important that the appropriate sexual education material and information on personal boundaries be shared freely and include perspectives with people living with disabilities. It is important the desirability of a person living with a disability is affirmed and included in mainstream society. How to speak clearly to ones boundaries and the expectation that they be respected must be taught and consistently affirmed. Of utmost importance is that a person living with a disability understands themselves as worthy and dignified as a result expects to be desired, expects to be respected and expects to be heard. All of these will aid in the healthy expression of sexuality. They will aid one living with a disability to rewrite the story of desire so that they are the stars. Their sexuality and body no longer monstrous or abnormal unless of course they choose to express and portray it as such

Every Ontario student requires support from teachers, classmates, family, and friends in order to flourish and to achieve a full range of opportunities and participation in their school experience.

All students should be engaged and participate in sexual education programs designed to build an awareness, vocabulary and includes access to information that discusses a wide range of topic areas related to sexual education. Inclusive sexual education strategies open up dialogue so that students are educated about human sexuality and intimate relationships with self and others. This scope of sexual education promotes independence, relationship building with peers on a foundation of equality and inclusion, and encourages a healthy sexual sense-of-self.

Some sexual education topic areas should include education around, independent decision making, self protection, human anatomy, STD’s, HIV and AIDS, LBGT – Lesbian, Bi-sexual, Gay and Transgendered and the role of family and cultural value systems in sexual health.

Web Resources:

Ontario Ministry of Education, Planning for Independence, Human Sexuality

http://www.edu.gov.on.ca/eng/general/elemsec/speced/
planindep/15.html

What Protection Exists Under The Human Rights Code?

Sexual Orientation: Your Rights & Responsibilities

http://www.ohrc.on.ca/english/guides/sexual-orientation.shtml

Ontario Women's Directorate

Let's Talk About It!, A Teen-friendly Guide on Preventing Sexual Violence

http://www.gov.on.ca/citizenship/owd/english/youth/index.html

Education And Disability: Human Rights Issues in Ontario’s Education System

http://www.ohrc.on.ca/english/consultations/
education-disability-consultation-paper.shtml

Health and Physical Education

The Ontario Curriculum, Grades 1-8

http://www.edu.gov.on.ca/eng/document/curricul/health/
healthe.html

Disability Online

Sex education for children with intellectual disabilities

http://www.disability.vic.gov.au/dsonline/dsarticles.nsf/pages/
Sex_education_for_children_with_intellectual_disabilities?
OpenDocument

Disability Online

Disability and sexual issues

http://www.disability.vic.gov.au/dsonline/dsarticles.nsf
/pages/Disability_and_sexual_issues?OpenDocument

Moss Rehab Reource Net

Sexuality and Disability Fact Sheet

http://www.mossresourcenet.org/sexuali.htm

MyPleasure Sex & Disability Guide your complete resource for education and information for people who have various disabilities or health-related conditions.

http://www.mypleasure.com/education/disability/index.asp

MyPleasure Sex and Disability Article Archive

http://www.mypleasure.com/education/sexed/disabilitylist.asp

Good Vibrations Sex and Disability Achieve

http://www.goodvibes.com/cgi-bin/sgdynamo.exe?
HTNAME=magazine/features/sex_and_disability/archive.html

Cripworld Guide to Amputation, Devotees, How can I protect myself?

http://www.cripworld.com/amputee/devos.shtml

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[1] This realization and my process was supported and continues to be catalyzed by the theory of center/ normal and out of center, in denial, in my life that was offered to me by creatrix, rogue scholar and organizer in community T.J Bryan aka Tenacious an able-bodied ally who approached me with conversation as part of my attempting to decentralize and disrupt the social positioning of her [constructed as] able body see darkdaughta.com

[2] As a trauma survivor, I realize now that because my family and those around me could only understand me as asexual and undesireable they permitted themselves to support and perpetuate while simultaneously denying the extreme abuse and neglect I experienced as a child under their care.