For the past two years, I’ve been on a journey to understand the minds of people who have a preference for people with disabilities, whether that be as a form of self-identity or sexually. It’s been confronting, thought-provoking, fascinating, and confusing. My journey began after I joined a website for people who have a spinal cord impairment. I met a young man on the website forum who said he was paralyzed. My years as a youth counsellor kicked in and I started talking to him in a mentoring role. After a while, he confessed he wasn’t paralyzed, but desired to be so. I was initially shocked and somewhat disturbed. I didn’t understand why anyone would voluntarily want to have a spinal impairment. The website quickly contacted me and warned me about the young man stating he was a ‘devotee’. Having no idea what the term meant, I did some research and learnt about an interesting subculture of people; some had a sexual preference for people with disabilities (devotees), some wanted to be disabled themselves (wannabes) and some pretended to be disabled (pretenders).
I was interested in this subculture as much to understand them as to understand my own reaction towards them which initially was disgust and fear. I decided the only way to attempt to understand them was to talk to them so I joined a website for the devotees that, along with chat forums, displayed images of women using wheelchairs, crutches, callipers and women who had amputated limbs. I found it disturbing that most of these images appeared to be personal images taken, possibly without consent, from places such as facebook. I was beginning to understand why there was a rift between the devotees and their objects of interest – women like myself.
I was certainly an oddity amongst the group as I was the only female with a disability on the website. Most of the men who visited the website thought I was a wannabe, a faker, but there were some who messaged me and, for the first time, I started to gain an understanding of their peculiar secret little world. Getting to know people whom you initially regard with fear is the best way to confront that fear, as most of the fear stems from ignorance about the ‘desire’. Admittedly participating within the ‘safe-zone’ of a controlled website also made it easier for me and less threatening.
I discovered many of them live in Europe and it happened that I was about to go to Switzerland to visit my sister, so I agreed to meet a few of them. My first encounter was with a devotee in a public park in Bern at lunch time. I sat on a very hard, wooden and uncomfortable park-bench. Of course, for him, this would have been a disappointment as he had travelled from Germany to meet a ‘girl who used a wheelchair’ and here I was, trying to look ‘normal’ sitting on a park bench. He was very open about his specific desire; paraplegic, complete lesion, and that the desire had manifested itself when he was about 11 years old after seeing a woman using a wheelchair in a mall. He had followed her and for the first time in his life, had been sexually aroused. Interestingly, the majority of people I spoke to also had similar stories, and the age 11 seemed to be their age of sexual awakening.
So we sat in the park, on a lovely, sunny day in Switzerland, and I learnt that he had a girlfriend who he kept his ‘secret’ from and struggled to find her attractive but, wanting to appear normal he dated her anyway. We talked for an hour or so then he left to drive back to Germany. He was extremely polite, considerate, open and courteous. Later, I discovered my mother had followed me to make sure I was safe which I found amusing as at no point did I feel scared or threatened by him.
Over the course of the month I was in Europe, I met a few other devotees. It was strange talking to them. I pushed the thought of them possibly finding my impairment arousing out of my mind as it was distracting to my goal of getting to know and understand them. In hindsight, I guess I used myself as ‘bait’, but at the time, I was desperate to understand them so my status as a ‘disabled woman’ was expunged from my mind. I saw myself as a social researcher.
I returned from the trip and felt uncomfortable, not about the devotees I had met, but about what was going on with my thought processes and my evolving unease with my own perceptions of self-identity. Despite talking at great length to the devotees, I had so many other questions I wanted answered: Why did most disabled women view the devotees as ‘predators’? Was there something I had missed in my conversations with them? And why did males with spinal impairments not have a problem with female devotees?
As my social media presence grew, I met more men with a desire for disabled women and it occurred to me that this wasn’t just a random handful of men, this was a large community separated by their own shame and guilt. There were thousands of them yet it was extremely hard to find men willing to talk openly about it.
I made a few observations. Because they are misunderstood and frequently ‘judged harshly’, these men often take on pseudonyms to befriend women like myself. In my experience a friendship that begins with a lie will never end well. But then honesty brought about condemnation from disabled women so it was a catch 22 situation for the devotees in some respects.
Questions they frequently asked themselves were: Why did they feel this way? Why were they attracted to disabled people? Were they mentally sick? They had as many questions about themselves as I had for them. In cultures where disabled people are not considered a valued part of society there appeared to be more devotees. Often they would remark that, despite their desire for disabled women, actually meeting and dating someone with a disability could bring shame upon themselves and their families. I found this particular issue very confronting as the culture in New Zealand is a very liberal and open minded one. Disabled people often have relationships, jobs and are part of society. In New Zealand there is an expectation for many disabled people, especially those who have had an injury, to get back to a normal life in whatever way possible.
A year later, I returned to Europe and met a couple more devotees. One man wanted to use a wheelchair around me as he identified as being disabled as well as being attracted to disabled women, a combination, I discovered, that was quite common amongst the devotees/wannabes and pretenders. Initially I found it unfair and was irritated that someone would want my impairment as it was not a choice I had the luxury of making. However, it was a conversation with my PhD supervisor that made me rethink my prejudice around this issue. She argued that if someone identified strongly with an identity who were we to judge using our own beliefs of what is considered ‘normal’? Gender reassignment is now common place and accepted yet someone, who identifies with a person without a limb or who is paralysed, is seen as mentally unwell, sick even. Both situations involve self-identity and the feeling of belonging to a particular group. I, therefore, let them express themselves through their identified disabilities while being around me and, I reminded myself, it was not my place to judge them.
The devotees I met were sexually aroused by disabled women doing, what I regarded as mundane tasks, transferring, struggling, spasms, wheeling around and living in our different world of paralysis and adaptation. Nudity often wasn’t part of the arousal, it was in the ‘activity of daily living’ that brought about the ‘sexual triggers’. They talked about liking atrophied limbs, soft feet, problems with toileting, driving adapted vehicles and moving paralysed limbs. Often they also shared other fetishes such as an interest in stockings, foot-play or women's shoes.
I wondered if a reason why women, like myself, found devotees confronting was because the devotee was aroused by the parts of our bodies we didn’t like. In a society where physical perfection is all pervasive especially for women, I learnt very early on after my injury to despise my altered body, my atrophied muscles, my strong muscly arms which I thought looked too masculine. Suddenly knowing it was these very parts of my body that were so highly valued by the devotees made me feel uncomfortable but, that unease came from a sense of guilt of not accepting myself and loving my own broken body. I loathed the parts of myself that didn’t conform to the ‘female ideal’.
On one occasion when meeting a devotee I decided I wanted to push the boundaries. I wanted to absorb what he liked about me. Yet, even after I let him touch my feet, I still couldn’t understand his desire. Like most of the devotee men I met he was married so I found it morally difficult to understand why I had let him touch me. Also, where was his loyalty towards his partner? Was the simple act of touching another person's feet ‘crossing the line’ if it meant it had aroused him? I hadn’t felt anything during the encounter but afterwards I felt a sense of guilt that I had engaged with a married man and activated his feelings, feelings that society dictates are only acceptable between him and his wife.
Being an empathetic person, it grieved me to see the suffering of the devotees I met. There was so much shame, inner turmoil, anger at oneself, depression and even suicidal thoughts because they felt so different. Also I found the majority of devotees, wannabes and pretenders dislike others who share their ‘desire’. Is this more about the shame involved with liking something that is not socially acceptable in this day and age? The irony is that we shared a sense of suffering and sometimes guilt towards something we had no control over. Like them I am judged constantly, in many cases, harshly so. I am often discriminated against and I suspect it is this mutual sharing of grief and trauma that has helped me towards understanding them. I know what it feels like to be different in a world that idolises normality.
I wondered too if part of the ‘predatory’ assumption we have as disabled women towards devotees is due to the added vulnerability we face because of our physical impairments. It is harder to run away from a perceived threat after all. And certainly not all the devotees that I’ve encountered have been polite and considerate towards me. The boy I had met originally had sent abusive messages when I didn’t respond to him, even saying he was coming to New Zealand to ‘hurt me’. I alerted the police after his harassment didn’t stop, but I have now concluded that this particular boy also has a form of Asperger’s and, although very intellectually smart, he did not understand social clues.
Of interest also is the response I get from friends when I discuss devotees. Many of my friends use terms such as ‘disgusting’, ‘perverted’and ‘wrong’… and inside, a small part of me feels ashamed. Is it that bad to like that someone likes me, a person with a disability? If so, why? I don't see myself as typically beautiful or normal in the eyes of society. Is it offensive to think someone liking a disability is wrong? If so, what does that say about the value we place on people with a disability? Should we find it wrong for someone to be attracted to over-weight women, or extremely slim women?
My concluding remarks are that I have learnt that I will not ever be able to understand the ‘desire’ devotees have towards my impairments but I do think it’s ok to like something, even see beauty in something, that others regard as imperfect. And just because I don’t see it, doesn’t mean it’s not real. If anything, seeing beauty in what is usually regarded as ‘imperfect’, is rare and unique. And, I admit, it has made me more confident knowing people like variety, and just because I find something ugly, doesn’t mean that others do. I’ve learnt to be open minded, to cast aside my own prejudices and fears, and confront the status quo. I’ve started to question the concept of what it is we find ‘desirable’ because, perhaps like homosexuality, it’s a continuum. Some people like to be dominated, some like bondage, some like pain. Whatever it is that we find arousing or of interest, it’s ok, I believe, as long as it’s not hurting anyone and is consensual.