Parental dilemma on encountering the sexual expression of children with profound disability.
It is not my intention to antagonize or ridicule parents and caregivers to arrive at this recognition, but to use my personal experience and love of my son with profound disability to inspire other parents and caregivers to help resolve the dilemma when they encounter the sexual expression of their own children with disabilities.
In the last 30 years there has been significant and substantive progress and advancement in all aspects of the lives of persons with disabilities. The progress and advancement include palliative care, physiotherapy, education, human rights, sexual recognition and sexual rights. However, there are. amongst persons with disabilities, a group whose disabilities are so profound that their voices have not been heard and have not benefitted from this advancement. The majority in this group of profoundly disabled persons live their lives isolated and lonely in the dark corridors of institutions or asylums or the far corners of homes, and continue to be ignored, marginalized and discriminated against. I hope that my story of the love and care that I have provided to my profoundly disabled son. specifically, the recognition of his sexuality and sexual expression will shed some light into the silent, voiceless world of persons who are profoundly disabled and will add to break the chains of ignorance and discrimination.
My story begins nearly 30 years ago, when my wife (now ex-wife) gave birth to a wonderful baby boy named Mustafa. It was a moment filled with tears of pride and joy as most parents feel at the birth of a son or daughter. However, our bubble of joy and feelings were shattered when we later learned that Mustafa was inflicted with a serious neurological disturbance known as profound cerebral palsy. Even though we had this heart-breaking news, I remember at the time promising to Mustafa that I would protect, care and provide a life of happiness equal to his sibling sister who was a year older.
Although the information in this paragraph may seem mundane and familiar, it is important for you to understand the neurological and physical disorder that is caused by profound cerebral palsy that led to my recognition of the sexuality of my son, and will also provide a peek into the world of a profoundly disabled person. Over time, the development of my son has been painfully slow. As a result of the severity of the cerebral palsy, Mustafa has limited motor control and cannot voluntarily move his muscles and as a result cannot walk or sit and is practically bedridden. In addition to his physical disability, Mustafa also faces profound intellectual disability as he cannot understand and cannot verbally communicate through any language and his ability to learn seems very limited. These disabilities put Mustafa with an IQ well below 20 (it may even be unmeasurable) and is therefore classified in a medical group of persons commonly referred to as persons with profound intellectual and multiple disability (PIMD). However, while the group classification as a person with PIMD generally reflect the negative disabilities of Mustafa, they do not reflect his positive abilities.
Given the profound disability of Mustafa, he is surprisingly healthy and has not suffered any major illness throughout his life. Mustafa sufficiently manages to eat his food and he sleeps well. What is remarkable is that although Mustafa cannot talk or express a language, he makes a variety of sounds to communicate his emotional feelings of joy, happiness, satisfaction, pleasure, pain, anxiety, boredom, hunger, etc. For example, he would make gurgling sounds of laughter and smile to indicate his happiness. He would make soft sounds or at times loud rhythmic sounds to indicate his contentment. He would scream if he is in pain and softly whimper to indicate his boredom or his uncomfortableness, or sigh and yawn if he is weary or tired. His other forms of expression include his facial expression, the look in his eyes and body language. He would pull stiff to something that is hurting him or making him uncomfortable, or by succumbing his body to something that he enjoys. Although Mustafa's sight is difficult to gauge, he does recognize familiar people around him, for example, he often smiles or laugh when I call out his name or whistle a particular tune, and respond vocally to the care and affection I provide to him. Mustafa's hearing, smell and sense of taste all seem normal and he loves the outdoors, as his eyes would light up if he is taken to a new environment and would shout with excitement. As a result of the variety of communication other than a verbal language, Mustafa sufficiently manages to express his physical and emotional feelings. Besides the communication that I have described, there are hundreds of nuances of communication between Mustafa and myself that help forge a special bond between us, a bond that all fathers and mothers who have a close relationship with their children are familiar with.
It is also important to note that Mustafa's PIMD and cognitive impairment preclude him from any form of independent living and is entirely dependent on me, his father for the constant daily care, safety, nurture and the expression of his needs. This means Mustafa has no autonomy or capacity to understand, and is unable to make any decisions concerning his health and care, nor is he able to provide informed consent to any of the care provided for by me and this means that Mustafa is physically, intellectually and legally incompetent.
When my son was around 17, whenever I used to bathe him or change his diapers or apply physiotherapy and massages, my son started to express his sexual feelings by means of having an erect penis, but his sexual behaviour was unlike earlier times, as he was growing up. It was a consistent sexual expression and became more acute and extended over a longer period of time. I also noticed his body pulling stiff during his moments of erection possibly indicating a slight agitation or confusion. As a father who understood sexual behaviour, I knew that my son was trying to express his sexual feelings because of the arousal that was happening around his body and that this sexual behaviour was no different than most teenagers encounter after puberty in their personal sexual development. I did not think it was strange because I knew my son's abilities and disabilities and, while my son had certain physical and intellectual disabilities, he certainly did not have a sexual disability.
When I first encountered my son's sexual awakening I asked myself, "Hang on, what should I do about my son's sexual expression?" I decided the best thing was to see what professionals were advising parents and caregivers of children with PIMD in a similar circumstance of recognizing their children's sexual awakening, and then to act on the advice given. I discovered a consensus amongst professional opinion that all persons with disabilities are sexual human beings and have equal rights to sexual expression. I also discovered that the most prevalent form of sexual expression for individuals with severe or profound mental retardation was masturbation and that masturbatory expression was considered to be both therapeutic and important for the overall growth and development of individuals with disability.
The practical advice given was that masturbation could be self-practiced or provided by a partner and, if this was not possible, than a sexual therapist or sex worker. However, to my surprise, all the articles by professionals referenced their advice to persons with disabilities who had the capacity to understand and provide consent, even if this was in a limited way. The advice ignored and excluded those persons with disabilities who could not understand or provide consent. The main reason for the exclusion was that professionals treated persons with disabilities as a homogenous group based on their IQ score and used the standard of a profoundly disabled person as a person who was able to understand and communicate consent. This standard was used despite the vast differences of disability within the group.
As Craft and Downs aptly stated, "The label of profound and multiple impairment is deceptively succinct and in numerical terms, it covers the smallest proportion of those with learning difficulties. However, the label masks the enormous diversity subsumed within it." (Sexuality and Profound Multiple Impairment). This exclusion created a contradiction of the ethics proposed that all disabled persons are equal sexual human beings, since it discriminated against profoundly disabled persons based on their intellectual capacity. On the one hand you had professionals stating that all disabled persons are equal sexual human beings and should not be discriminated based on their disabilities and on the other hand, you had professionals denying sexual therapy treatment to profoundly disabled persons because of their disability of not being able to understand or provide any form of consent.
After reading and studying the advice given by professionals regarding the sexuality of persons with PIMD, it left me bewildered and perplexed and, in a sense, in a "no man's land." I thought the only way forward was to treat my son equally to other disabled persons and apply the professional advice given to other profoundly disabled persons, namely, therapeutic masturbation to relieve and gratify my son's sexual expression. As Mustafa's profound disability, both physically and intellectually, excluded him from practicing self-masturbation or having a partner, the only alternative was to have therapeutic masturbation applied by a sexual therapist or sex worker. However, living in South Africa, I found myself in a difficult situation or predicament regarding the professional sexual therapist or sex worker to provide for the therapeutic masturbation of my son. There are no medical or other professionals such as physiotherapists or sexual therapist providing a service of therapeutic masturbation to people with disabilities and the only alternative was to consider the use of a sex worker. However, this option was also fraught with difficulties. First of all, sex work is illegal in South Africa, secondly it implied additional financial resources and the burden of payments on top of the high cost of looking after all the needs of a disabled person that I can ill afford and thirdly, I am not aware of any sex workers in South Africa who are trained to provide for the sexual therapy requirements of persons with disabilities. It was at this stage that I soon came to realise that there was no alternative way to provide the therapeutic masturbation that my son needed other than to apply the therapeutic masturbation on my own.
I remember the first day I applied the therapeutic masturbation to my son. It felt completely natural as I already had a deep sense of intimacy with my son's body through the process of massaging him, bathing him, changing his diapers, etc. The therapeutic masturbation was a natural extension of what I was already doing in taking care of my son's body. I also remember how my son expressed a sense of relief, delight and happiness with a smile followed by laughter and other sounds of contentment when I applied the therapeutic masturbation. His body also succumbed through orgasm to indicate his enjoyment of the masturbation. The reaction indicated a positive acceptance of the therapeutic masturbation by my son, both physically and emotionally. The therapeutic masturbation also led to a calmness in my son's behaviour and he continues to show his contentment and happiness to all around him.
After the decision of applying therapeutic masturbation to my profoundly disabled son I contemplated on my action and, in the year of 2007, decided to publicly pronounce on my action. The reason I decided to make an announcement was threefold. Firstly, it was my advocacy of human rights. I felt that as a parent I had the fundamental right to positively influence my son's sexual development and as a father who has been personally looking after his son's health and interests since birth, I could not ignore his sexuality. Had I done nothing, I would have been failing in my duty and it would not have been in the best interests of my son. Secondly, I was inspired by the story of Ashley X, a severely disabled incompetent young girl whose parents opted for oestrogen therapy, a hysterectomy and breast removal--the socalled 'Ashley treatment'--in order to reduce her projected adult weight and improve her quality of life. I felt as if I was in the shoes of Ashley X's parents, trying innovative medical treatment to try and provide her with happiness and a good quality of life. Thirdly, I felt I had a duty and responsibility not only to my child, but to all the other children with PIMD, whose sexuality and sexual expression was not recognised. The initial reaction by the public when I first disclosed my action was similar to the reaction of the parent's medical treatment of Ashley X, one of shock and disgust. It was only when I began to explain the masturbation as a therapeutic sexual treatment and was undertaken in the best interest of my son that it changed the perception of the public that I was sexually abusing my son.
It is worth mentioning that there are a few articles by professionals concerning persons with PIMD who had no capacity to understand or provide consent but this was mainly in the context of sexual abuse by parents, caregivers, friends or strangers. I am in complete agreement with the ethics and laws to protect profoundly disabled persons from sexual abuse but would defend my action by stating that the therapeutic masturbation I am providing to my son is, by definition, not a sexual act but a medical treatment and would fall under the contentious ethical issue of the rights of parents to provide medical treatment to a person who cannot understand or provide consent, similar to the case of Ashley X.
The reason why almost all parents and caregivers ignore or fail to recognise the sexuality of children with PIMD is complex and varied but some of the main reasons are:
* Parents and caregivers are so overwhelmed by the basic daily care of children with PIMD that they cannot even consider the sexuality of their profoundly disabled and dependent child. Parents and caregivers tend to prioritize the multiple disabilities facing the child such as physical and sensory impairments, communication impairments, incontinence, impairments concerning mobility, behavioural challenges and consider the sexuality and sexual expression of the child as least important or not worth considering.
* Parents are uneducated about the sexuality and sexual expression of persons with disabilities which makes it difficult on how to act when encountering the sexual awakening of persons with PIMD.
* Religious and cultural beliefs of parents and caregivers exclude the profoundly disabled child from being regarded as a sexual human being and parents face moral dilemmas when confronted by their disabled child's sexuality.
* There is a taboo in discussing general sexual matters such as masturbation in society and this attitude gets aggravated in the discussion of sexuality of persons with disability.
* The legal law stating that any sexual activity with a non-autonomous person who cannot understand and provide informed consent is regarded as sexual abuse, stops any parent or caregiver from wanting to provide sexual therapy.
* Parents and caregivers find that they are unable to access professional help from sexual therapist and/or sex workers because they are either non-existent, illegal, or untrained to provide the necessary sexual therapy treatment for persons with PIMD.
I conclude by stating that I know the fundamental and vital role that parents and caregivers play in providing care and nurture of children with disabilities. I also understand the difficulties confronting parents and caregivers in the daily care of children with PIMD. It is within this context that I wish to appeal to parents and caregivers to consider that such care and nurture includes sexual care and this begins by recognizing that all persons with disabilities are sexual human beings. It is not my intention to antagonize or ridicule parents and caregivers to arrive at this recognition, but to use my personal experience and love of my son with profound disability to cajole and hopefully inspire other parents and caregivers to help resolve the dilemma when they encounter the sexual expression of their own children with disabilities. Persons with PIMD are the most vulnerable persons of our society and they need the help of all able-bodied persons, like you and me, including parents and caregivers, to be able to give expression to their silent voice. Finally, most of what I have stated is beautifully encapsulated by a giant of a social worker and lecturer, Ann Craft in a saying way back in 1987:
"To be a human being is to be a sexual being. Although there may be a range of intensity, varying over time, we all have sexual needs, feelings and drives, from the most profoundly handicapped to the most able among us. Although we can shape (and mis-shape) sexual expression, sexuality is not an optional extra which we in our wisdom can choose to bestow or withhold according to whether or not some kind of intelligence test is passed."
Fayzal Mahamed is a research associate with the Dept. of Humanities at the University of Johannesburg and is an advocate of social and human rights. He is collaborating with Marlene de Beer, a social work lecturer in the University of Johannesburg, to produce a paper detailing the experience of Fayzal's care of his profoundly disabled son. The website for details on this impending paper is: www.academia.edu/21850900/Paternal_therapeu tic_masturbation_of_a_disabled_son_and_a_sexual _assistance_campaign_-_Article_by_Marlene_de_ Beer_and_Fayzal_Mahamed
|Printer friendly Cite/link Email Feedback|
|Publication:||The Exceptional Parent|
|Date:||Jun 1, 2016|
|Previous Article:||Low tech tools of empowerment: accessing curriculum through assistive technology.|
|Next Article:||Grace defined the odds.|