The Back Story:
A 26-year-old heterosexual male, lives in a group home…Sustained an Acquired Brain Injury (ABI) at 21 years of age due to a motor vehicle accident.
“Justin” has been living in a group home since 23 years of age; between the time of his injury and entering the group home he underwent significant mental and physical rehabilitation…moving from the acute care setting to a long stay rehabilitation centre as he improved. “Justin” by medical definition has a disability.
The group home offers around the clock care with trained care staff. Care staff offer personal and social cares as well as administering medications.
Along with “Justin’s” ABI he has developed a series of personality changes which often require a care plan to manage.
After significant medical intervention and management; “Justin’s” prognosis is positively stable however static. “Justin” will require 24-hour care and assistance for his activities of daily living and other needs for the rest of this life.
Throughout the last 5 years – “Justin” has not had any sexual contact or relations. “Justin” has no mental, physical or sexual dysfunction which impedes his interest and or capacity to consensually engage in any sexual relationships or activities and yet – he has not been “allowed” to express his sexual needs/ desires since his accident.
Hi, CJ here… So! One could say from a certain point of view – “Justin” is genuinely lucky to be alive – surely 12 months’ worth of care in a hospital and other rehabilitation centres is worthy of the ‘assumption’ that the injuries he sustained were from a pretty horrific accident. No doubt… family, friends, colleagues and others were extremely grateful when “Justin” survived the ordeal and was able to come out the other side – firstly alive and secondly; with mental capacity and physical function. But! It is here where I ask the question – do we look at the instant gratification of “surviving the odds” and that becomes simply good enough?
The questions beg around quality of life and the expressions of oneself to fulfill/fill this ‘quality bucket’. Where do we start this conversation and where do we draw in the sand how far we go at filling this proverbial bucket? Is it money? Is resource? Is it societal value?
In the instance of quality and the aspect of sexual health of any individual – one needs to ensure clarification which stipulates – these needs/ expressions/ desires is individualized, person to person, case by case, patient to patient – human to human – individualised! Does “Justin’s” other side include ever having sex again? Or ‘should’ he just be grateful he’s breathing?
Every time I have worked with health care professionals – (I will stick to those who work in long term care settings for the sake of this point) – there is always the question around – “why should I be facilitating/acknowledging/ assessing/providing care in the sexual health arena? – that is not my job – I am not a sex worker – it should not be up to me to allow this – ‘on my shift’/ ‘in my facility’/ ‘under this roof’, someone else can address this”.
EVERY. SINGLE. TIME!!!
Now this is not an opportunity taken to blast those people who work in this area – I genuinely know – the safe navigation and assessment of sexual health and welfare has NEVER been a major part of their training or scope. How can anyone expect to address this exact issue when they have not been equipped with the knowledge and sound assessment tools? ‘They’ often say “I don’t to even know how start… I don’t know what to say… it makes me so uncomfortable…”
It makes me uncomfortable too – but for other reasons!
Staff have voiced concerns around privacy, confidentiality, needing a definition of appropriate sexual behaviour and how they handle situations where patients are deemed to be sexually inappropriate toward staff. These are all valid concerns – however these concerns are easily debunked with some sound education.
So… After we acknowledge the fact it is not the patient who is sexually disabled – it is in fact the system… then where do we start? How can a system start filling the “sexual health quality bucket” (yes this proverbial bucket now has a name) – when this said bucket is more often than not getting left in the closet (reference intended) to collect dust and remain empty (disabled and neglected)???
“Justin” is a 26-year-old male who was sexually interested and active prior to his accident. “Justin’s” injury has branded him disabled – the assumption is – so is his sex. Therefore this never gets addressed and if it does (without proper enquiry and assessment) it is often addressed with a negative undertone or tone which brands the person “dirty”, “devious” and “problematic” to care for.
Sex and the disability sector is swimming in challenges… universally. Historically, disabled people were institutionalised – especially those who showed other abilities from birth, rarely were those people offered individualized care where their “quality bucket” not even of a sexual nature was filled at all. The disability sector in Australia has had a long road in recovering from questionable care techniques which have instigated numerous royal commissions – from this the sector has improved significantly.
So we agree… there has been improvement in disabled peoples human rights but it is the year 2020 and the system in which these humans are cared for still has no interest in taking the quality sex bucket out of the closet and filling it up.
I will say it again – it is the system which is disabled – not the patients!
I could go on (in detail) about all aspects I see that are disabling however fear not – I will not. What I will do however is say two factors/elements which significantly impede the quality of life of those living with disabilities. Assumption and Education.
No doubt you have picked up on that one does dove tail nicely into the other – however hear this first…
The assumption that a disabled person does not and or cannot have a sexual interest or desire is utter bullshit.
That mere assumption is so powerful it effects lives beyond fathom.
I know and have seen education be just as powerful.
However assumption will be forever education’s antagonist in many fields but especially when so many factors influence sex and disability.
It is clear that one needs to reserve all assumptions about ones’ sexual capacity and interest and then one needs to simply replace it with sound, positive sexual health education.
There, I said it.
It is not profound, it is downright simple. Now I am not here to change this world overnight – I am here to have you straighten up and listen though… to reserve one’s assumption you first have to identify you own bias… again… not profound… but I hope now you are sitting up straight.
Ask yourself… what do you think influences your thoughts around sex and disability?
Do you think your education from wherever has equipped you to passionately advocate for their human sexual right in a disabled system? (forgive me… that was a loaded question)
Let me put it this way – (clause – generalized case scenario) “Jenny”- a 52-year-old divorced heterosexual female is asked to facilitate and ensure the cares of “Justin’s” sexual health care plan during her shift in caring for him. This means she is to facilitate the opportunity within the residence for “Justin” to facilitate activities of self-pleasure (for example) and or access to a sex worker (for example).
Now Jenny has had no education on how to carry out a sexual health assessment or even to have a dialogue with “Justin” and therefore does not know how to navigate the logistics of facilitating “Justin’s” expressions and interests… desires. “Jenny” has stated that she feels uncomfortable in providing these opportunities – “he’s as old as my son” “it’s not my job to this”… so what happens… nothing!
Jenny simply skips that part of the care plan and “Justin” has had this part of his life neglected and disabled.
“Jenny” is not alone in this and neither is “Justin” in his experience.
Many individuals assume disabled people have no interest in or “need” for sex…?
‘Surely you’d be happy with survival – sex is surely a bonus…’
So no need to get greedy “Justin” in your life on the other side.
These assumptions are devastating and infuriate me to no end.
If you have to silence your assumption – you need to increase your awareness and education. Done. The end. Full stop.
And if you are one of those amazing people who work in this disabled system and do not know where to start in advocating for your patient’s sexual health rights… start with this question…
“Justin – I want to ask you a question… do you want to have sex mate? If so, how am I ‘ABLE’ to help with this?”
Clinical Sexologist, Educator, Researcher
Note: The author is aware of “othering” in this piece – no offence was intended – if anything it strengthens the point.