Finding My Voice

As I write this, I’m trembling with bald, naked vulnerability. 

Some of you have noticed that I’ve changed my tone here and that my posts have gotten sporadic.  Not so much writer’s block; there’s much I want to say.  More like laryngitis.  It’s become difficult, painful to give voice to all I want to say.  I’ve retreated from posting here to rethink whether or not I should be writing at all because I’ve become aware that I have a new devo stalker. 

What’s a devo?

A devo (devotee, dev, “compassionate admirer”) is a fetishist who is sexually attracted to my wheelchair.  Some devos are attracted to braces or amputees’ stumps or the deformations caused by polio. 

I had no idea that this… subculture… existed until a friend; a more seasoned fellow wheeler clued me in.  Turns out that the brand new wheeler I was comforting online was actually a man pretending to be a newly injured woman.  The devo’s character told me how “she” was traumatized by the routine of self-catheterization, “she” just couldn’t get it right and “her” health was suffering.  Would I help?  Remembering my own struggles early on and knowing that proper self-cathing technique was critical to “her” health longevity and overall wellbeing, how could I not help?  We went through every excruciatingly intimate detail over and over. 

I felt so dirty and so STOOPID that I had fallen for someone so depraved.  I retreated into myself vowing never again to be fodder for another devo’s twisted fantasies.  But in order to avoid them, I had to know more about them. 

I did a Google search and found out way more about this world that I could ever want to know.  I wish there was a way to erase some knowledge once you obtain it.  I wish I’d never seen the photos secretly taken of women with disabilities just living their everyday lives.  I wish I’d never read the comments about “floppy legs” or the come-hither attraction of a pain-wracked spine so twisted by scoliosis that the woman can no longer walk or breathe fully.  I wish devos did not now own a small corner of my brain. 

I really discourage you from a Google search but some of you will insist so I’ll wait… g’head, look it up…

I told you so. 

I’d feel less dirty turning on the light and find my kitchen teeming with cockroaches.

For those of you smart enough not to plant that image in your head, here’s an analogy.  Imagine you posted your kid’s talent show video for your family and friends to enjoy on your facebook page. Unbeknownst to you, one of your facebook friends is NOT what they seem. Now imagine that “friend” posted your YouTube vid on a pedophile site and along with that surreptitiously filmed your kid at the playground and posted that in the same place.  Now, pedophiles from all over the world are viewing this very innocent footage and making sexual comments.  Your child is most likely physically safe since most of these people have no idea where to find you.  But still, that sexualized context remains.

Over a month ago, I learned that my image was being used in such a manner on a couple of devo sites.  Videos that I had made for work had been “repurposed” as devo porn.  With help I saw my work video with all the devo comments.  I could barely breathe and the itchy, icky, I-need-a-shower-before-I-vomit feeling overwhelmed me.  The comment that created the most activity also caused me the most horror. “It has nice feet.”  One of my feet was indeed discreetly bandaged. 

It has nice feet.”

Since then, every time I focus on writing, I can feel them, the devos, out there waiting.  I find I’m editing myself to avoid creating an orgiastic devo rush.

That post I made after my fall?  The one many of tell me you read on the edge of your seat?  Devos also read it breathlessly.  My helplessness, my struggle against my “useless” legs, my fear.  Pure. Devo. Porn. 

I’ve had 3 encounters with devos in my real-time life. 

Early in my life as a wheeler, pre-social network, the first showed up at my house out of the blue with a gift. We had never communicated before that moment at my door.  He was certain I’d be thrilled by his attention.  He wanted pictures of my legs.  A friend helped him understand that his attention was unwanted. 

The second was a serendipitous encounter in the grocery store. As I was at the self-checkout lane, he came in. He actually squealed with delight and rooted himself in front of me.  He stood rapt as I struggled to reach the money slot, dropped my change on the floor and spent way too long trying to pick it up.  When I finished, he clapped in delight and asked when he could see me again.  Pearl was there.  I wanted to let her eat him like candy. 

The last stalked me while I was in the hospital after my major fall late last winter.  Some of you may remember that drama. I was facing amputation of my legs due the severity of the fractures. He contacted me on a pretext using a name familiar to me.  I didn’t see through that pretext due to the haze of painkillers and anesthesia for my multiple surgeries.  For this particular devo, that trauma was a siren call of sexual promise. He wanted to be there; breathe in my pain and fear.  He wanted to see my fresh stumps. Touch them. Help bandage them.  He was disappointed when I turned the corner, began to heal and kept both legs.  As I healed and relied less on pain medication, the mind-fog cleared and that space of confusion that allowed this devo to move freely through my life cleared too.  With help from friends, I locked down my life, severed the link outside of my hospital room to my support system and choked off his access to me. 

So, when the devos come along here and comment on how harmless they are and voice their protests at my stereotyping, bear these moments in mind. 

December marked a real crisis of faith for me.  I considered shutting down this blog and hiding away from those I consider sexual deviants.  Every post I make on my life with SCI is devo fuel.

I’ve brought some of this on myself I suppose.  Since my injury was so public in my region, I decided to live my spinal cord injury just as publically; my small act of advocacy.  I know that before my injury, I had no clue about some of the issues that I now deal with regularly as a person with a spinal cord injury.  How can I expect the rest of you to understand and relate if you have no context?

Early in my wheeler life I found support in an on-line community.  I was struck by the honesty and willingness to share the most intimate details of life with a spinal cord injury.  In this community I often heard “If only the able-bodied world knew X about us (wheelers) then maybe we could move toward Y result.”  Based on this, I felt my decision to live so publically was a good one.

There are issues I’d rather not discuss.  Times I rather skirt some of the realities of life with a spinal cord injury.  But if you don’t understand my risk of public incontinence, how can you understand just how valuable reliable access to public restrooms is?  If I don’t explain all the ways I’m now different, how can we lobby together for equitable access so we can explore our similarities?   

That person with the smartphone?  Are they capturing the scene around us for an innocent reason or to post it to a fee-based devo site? 

The guy that says hello and stares in Starbucks?  Is he captivated by my charm and beauty or getting wood because of my wheels? 

Once again, the world feels dangerous and hostile. 

How do I move through the world with confidence and trust when it feels like it’s full of devos?  How do I trust? Anyone?   

What do I do?  Do I continue to live a big, bold, open life or do I hide away in the house?  Do I continue to share my life with you unfiltered and honest or do I start editing? 

Am I safe?

Is there an ulterior motive to that new person’s interest in me?

How do I get those devo-site comments and images out of my head?

When the person next to me in public looks down transfixed, is he thinking “There’s that quarter I just dropped.” Or “It has nice feet.” 

I am a woman, not a wheelchair.  A fully realized adult woman.  I have all the same desires and interests I did pre-injury. I AM still a sexual being.  I’m not as inanimate as my wheelchair.  I’m attracted to men who delight in my strength and capabilities but shelter my vulnerabilities.  You can’t have just part of me.   That’s the piece that freaks me out most of all.  These people; devos; revel in my helplessness, not my strengths and abilities.   

I have spent the past seven years clawing my way back from a devastating moment.  I have worked to develop a space where I fit again.  I no longer fit in the box my old life came in. 

Devos, I do not welcome your attention.  I cannot stop you from co-opting my image.  You may yet trick me into unwitting participation in your fantasies.  Any you take of me, you steal.  I will not curtail my life any further to avoid you.  I will not wear your shame.  You will NOT steal my voice.  

I am a woman, fully human.  Not an it.

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18 thoughts on “Finding My Voice

  1. Wow. I’ve never in my life heard of devos….had absolutely no idea this population exists. And I thought I was very aware…. I am really blown away by this.

    As I read your post, I couldn’t help but think of the sordid world of sociopaths and my personal experience with one and how I’d never really known what a sociopath was until I found myself married to one. And how I completely lost my voice for a period of time (thank God not for very long) and then struggled to regain it for fear I would be hurt or killed if I spoke out. I also felt so tainted and dirty (like your cockroach analogy) simply by association because I had let that horrible, monstrous man into my life and my children’s lives.

    But you know, one thing I’ve learned as I’ve put that chapter further behind me with each day that passes, is that by speaking out and writing about my experience while advocating to try to help others, it is almost like magic how that sociopathic segment of the population that seemed like such a threat to me and to my children is actually disappearing from my mind. I no longer remain on alert for them as I turn every corner. Because it turns out that when you reclaim your power and share your story, you are not allowing “them” to win. Whether they are sociopaths or devos, (maybe they’re one in the same), they truly mean nothing to you and your wonderful, beautiful, amazing life and the impact you are making on the world around you.

    I am very thankful you didn’t shut down your blog. Screw the devos. They are sick and pathetic and do not deserve a millisecond of our attention. They may steal bits and pieces of electronic images and words that you’ve contributed in a totally different context, but they cannot take any part of you. You are safe. And they can’t take that away either.

  2. I am a dad to my 3 1/2 year old daughter who is a para. I had never heard of this issue and it is terrible. Sadly, it is just another example of how our culture degrades and diminishes the humanity of ALL people. This is particularly disgusting though and increases the chance that one day I will be sent to “daddy prison” for beating the tar out of someone who threatens my little one . . . .

    Don’t stop speaking out. Don’t let the vermin win.

  3. Jennifer — this is unbelievable. I am so sorry to hear that you have been violated in such a way. You have lived your life is such an open and honest manner, sharing your challenges, your good times and bad in order to let others know they are not alone with what they are feeling. For someone to take advantage of that makes me sick.

    What a horrible realization to learn that what you are doing for good is being used to feed someone’s sick addiction.

  4. I am so very sorry for this encounter with a bad dev. I promise that there are some devs who are not like this!

    Those of us who happen to be attracted to people who have physical disabilities weep with frustration that the world only knows us through the horrific behavior of a few who have no concept of social behavior.

    Believe me, being a dev, growing up a dev, is an extremely difficult experience. Not to excuse this behavior at all. I just want you to know that people who have this attraction are very varied and are as different as people with disabilities are. Some are bad people. Others are good people struggling with an attraction that we never asked for.

    I do everything I can to shame and take down male devs who pose as disabled women. This is a disgusting and unacceptable behavior.

    For another perspective, I hope that you’ll give a chance to getting to know other types of devs. I’ve written the book on what it is like to grow up with this attraction and my website has a lot of info.

  5. Devs are not by definition sociopaths.

    It’s like this: there are bad people in any group. Some devs will be sociopaths because some percentage of any population is.

    We are not all bad. We are not all evil. As someone who has this attraction, it hurts me deeply that we are known and judged based on the disgusting behavior of a few.

  6. I came across your post on twitter and just wanted to send my sympathies and share a story which might make you laugh a little at a time when it sounds as if you might need it.

    For a time I was on a dating site for people with disabilities. As such I was fully prepared to communicate with my fair share of…oddities. Thankfully, not being in a wheelchair, I was immune to the largest number of devos (although I must add that I talked to several devos who were polite and kind and not particularly pervy…as with all these things, there are degrees). Even so, I had a few anonymous types try to lure me into conversations and even out and out cybersex.

    Occasionally I would interact. One person suggested that “she” (I’ve no idea of their actual gender, or, in fact, anything else about them) and I might take a virtual shower together online.

    Okay, said I. But this shower…what’s it like?

    Oh, says she, it’s hot and steemie (that was the kind of spelling I was putting up with – I’ll auto-correct for the rest of the tale to spare you) and there’s soap….

    No, I mean, is it nice and roomy? And is there a non-slip mat? And if we’re in a cubicle, are the sides nice and secure? Because I’m quite a large chap and I’m not good on my feet. If I go over, I could end up crushing you to a slippery death.

    Er, yes, it’s a big shower. I start soaping your back…

    Oh, that’s kind of you! But wait, that soap… is it coconut?

    Yes, it’s coconut and I’m lathering it all over you.

    OH NO! You see, I’ve got terrible allergies and coconut makes my skin all red, and my eyes get itchy and I sneeze everywhere!

    I’m washing it off.

    Too late! My back’s on fire with the itching, I’m blinded and, in trying to scratch at my ruined back I’ve tipped backwards into the cubicle wall. And guess what, it wasn’t that strong after all. With a crack the entire panel’s given way and I’ve tumbled out, unable to breathe. You’ve killed me – all I wanted was a nice friendly shower and you’ve gone and ended my miserable existence….

    By this point she’d logged out. I didn’t spend much time on that site and thankfully no longer have a need to. I’m also lucky that, not being in your position, I don’t have to think about the things you do. I hope that, with time, things will improve for you in some way. In the mean time, I’m glad that you’re someone with such strength of character and mind. You write about your experiences beautifully and I hope that you never feel a need to stop.

    Good luck with everything.

  7. Ya, what a bunch of F*****d up people. I’m so sorry for the sickos you’ve come across.
    It actually breaks my heart and I am upset right now.
    Not only because no one deserves to be treated that way but because I myself am a so called “devotee”.
    I am a girl and I’ve always thought guys in wheelchairs were more attractive than other guys…I don’t know why.
    But believe me. I have never treated anyone that way. I dated a guy in a wheelchair and I told him how I felt and he didn’t think I was weird…and I also never thought he would “love” my attention. I was nervous when we started dating cause I thought he was so cute.

    I also don’t partake in cybersex and I like to date people normally just as anybody else and get to know my partners on a personal and emotional level…not just sexual. And if a hot guy in a wheelchair has a bad personality, I am not interested.

    Not all people that are attracted to people with disabilities are weirdos. I have many friends with disabilities who know me, love me and don’t think I’m bad for thinking guys in wheelchairs are more attractive.
    It’s an attraction I have had from a young age and sometimes I felt guilty and ashamed for liking disabled guys. But at the end of the day I can’t control who I ultimately think is attractive.

    I just wanted to say hi and let you know that people called “devotees” are just like any other category of people. There are bad ones, rude ones, perverted ones and nice ones.
    One of the big problems is that people with disabilities rarely come across the nice devotees…that’s because nice devotees don’t stalk, harass or make rude comments to people with disabilities. They mind their own business and have normal social skills.
    Sorry again for your negative experiences.

  8. Yo. I was led here through a dev message board so you obviously know my game, but here goes….you’re a sexual being. You probably covertly check people out all of the time. It is human nature to sexually objectify. Speaking as a dev who is a normal human (who has dealt with her fair share of awful internet commenters due to profession), there are pervs in every bunch. This will probably freak you out more but you’re probably being checked out by devs every day, they just aren’t creeps, just like dudes who covertly turn to stare at my ass all the time. You don’t notice it. It is a curiosity that only a few people can pique and I suppose some devs are less good at controlling themselves, which is such a shame, and as inexcusable as saying a woman was ever “asking for it”. The thing is, we are a very moral gang, you just don’t know about the good ones. If you check out our message boards, you can see we are all pretty intelligent, literate, normal people who were just born into some Aspergian-interest in disability. Devs are all around, nurses, PT, since I’ve become more aware I’ve heard of 2 friends-of-friends-of-friends that likely fit the bill. I’d say talk to some people that have dealt with a normal dev, your wheelchair is not the only thing we see, it is the first thing we see, just like an attraction to dudes with black hair and blue eyes. Just because you’re physically attractive to a dev doesn’t mean they want to date you, you gotta have stuff in common. For me, I’ve dated enough AB dudes to know that I’d like to end up with a disabled partner and being a dev is so deeply ingrained in me it is basically my sexual orientation. Equating an attraction to disability to paedophilia is such an abject comparison it just feels sick and wrong to me. Bad dev behavior is deplorable but telling people it is best not to consider even dating devs is ridiculous and ignorant.

  9. I’m here to say that, after your experiences, you’re very, very justified in NOT giving other devs a chance (Obviously!!!), in my opinion. As far as I can tell, devs have had six chances with you and have ruined every one. If *I* had have your experiences, and I have had some… kinda…. then I wouldn’t give devs another chance either. I’m also a female dev of dis guys. I’m also appalled at the experiences you’ve had but I’m not here to defend devs. I think that the other peeps have well covered the “be open to good devs” bit very well and I love them for trying to open minds… but I don’t think you should, to be honest. I think you’re smart to protect yourself from further experiences like the ones you’ve had.

    I guess the main thing that I wanted to say is to please don’t feel stupid. You’re an open person and doing a good thing by sharing of yourself with the public and other sci’s. No one can ever control others behaviors and/or reactions. (If we could, I’d take care of all those devs who were apparently raised by wolves or monkeys or however else they wound up doing stupid/mean shit like clapping in the grocery store, WTF?!?) All one can ever do is deal with the rest of the world in good faith and that’s what you’ve done in the instances you’ve mentioned. Many of us girl-devs have also been duped by online pretenders like your new-sci-catheter-girl pretender. And so the conclusion I’ve come to is that all you can ever do is deal with others honestly and from your heart, what they do with that is out of your control. You can protect yourself from these things as best you can… my friends and I have actually developed a decent sense for the online pretender guys. (I’ll provide you with our list of red flags, privately, if you want it and still feel like you need it. We try not to publicly list them because we don’t want them to get better at the pretending.) I have no clue what you can do about all the other, aside from carry a nerf gun that will suction cup “Dumbass” or “Creep” flags to the foreheads of those dudes. (Or tattoo? Tattoo would be better, don’t you think?)

    I do hate to hear of incidences like the ones that have happened to you. It just really sucks and no person should ever do that to another. I will never understand why people can’t just be kind to each other, but I guess some people just aren’t built that way.

    Again, on behalf of those of us not raised by wolves, I’m so sorry that these experiences have been visited on you. I hope that you don’t feel the need to stifle your voice but do be careful and take all measures possible to protect yourself from those guys.

  10. I have allowed 4 devs to post here for the counter view. They have done nothing to change my opinion. I will reiterate, being attracted to my injury is in no way the same as being attracted to ME, the woman, the HUMAN. I will not be reduced the smallest part of who I am; a fully realized person.

    Devos please note. I will not accept any more comments from you. Go away now. You’ve been admirably represented by your four peers above. I will allow these four comments to remain if the rest of you just go the FUCK away.

  11. Frankly, I think the entire concept of “Dev” attraction is a mental illness. It’s not like being attracted to big butts or red hair. It’s being attracted to the trauma, or attracted to the wheelchair. I can understand why some “devs” are ashamed of themselves. They should be. And they should seek psychiatric treatment.

  12. I am linking my blog on Disability Trolls for more information on this subject.
    I want to reiterate that the focus should NOT be on whether all Devotees are “good” or “bad”. The focus should be on BEHAVIORS that are coercive, deceitful, manipulative, and predatory.
    http://disabilitytrolls.blogspot.com/

    These behaviors have a harmful effect on people with disabilities. The reason that most people lump all the “Devotees” into one group is that there has been minimal effort on the part of Devotees to distance and separate themselves from those members of the Devotee community that engage in this type of bad behavior. Ruth Madison is the exception, not the rule.

    For example, take a look at this website called Devotee!
    http://devotee.tumblr.com/archive

    Clearly, anyone who views this website and it’s name will associate Devotees with people who steal and creep photographs of unsuspecting people with disabilities, and put them into one place for other Devotees to view.

    As you can see there is only ONE common theme that runs through this entire selection of photographs. Nothing about the subjects as People, everything about the subjects as Object of Disability.

  13. Erik,
    I posted your comment because I respect you and value your opinion even if I do not share it. If you saw half the comments that I’ve not passed through you would be appalled; including the guy who has promised to come here and “teach me right.”

    Some of the commenters have explained that the issue here is that I am flawed (I am but that’s beside the point). If I were less bitter, less angry and more accepting of my injury I would welcome the attention of devotees. I’m not going to rehash all of my thoughts here.

    But, if the issue was simply my inability to accept my injury, why do the devs hide from the able bodied world as well. There is no post-injury anger, no “bitter cripple” syndrome there and yet they remain pariah there too.

  14. The Last Word.

    It is, after all, my blog. Everyone is free to go start their own to share their own opinions and experiences; just as I have done here.

    So, the essay in question was written and posted nearly 9 months ago. It’s old news but a recent find to the devo-sphere. Since then, my blog has been swarmed with devo comments, nearly 300 in all in just 2 days.

    I passed through the first few. Very few of my friends would have done the same. But now the devo viewpoint is more than represented. I’m not required to be fair but I’ve more than been so. Then the devo comments became boring iterations of the same themes as I have delineated above in my previous comment.

    According to the sermons and lectures I’ve received from countless devos, they are most up-in-arms because I told them to fuck off. I’ve come to realize that, in spite of fuck being my favorite word in the English language, I don’t use it in my blog. Don’t be overly offended by the use of the “F” word. I really cannot communicate without it.

    Their comments sound very much like the justifications that pedophiles use. Not that their target attraction (people with disabilities) are child-like but all of my defense attorney and prosecutor friends who have read the unapproved comments have said the same thing. These individuals’ justifications for their behaviors have a unique twist.

    Next, as I said before, their comments indicate this is my problem. I am unaccepting of my injury. I am a bad girl; a “bitter cripple” and unable to accept my sexuality. Again, if only they knew ME instead of their image of my disability they would realize how wrong they are. I am one sexy beast.

    I did not know how many female devos there are. They seem to outnumber the males (whether they’re really women and not on-line personas is another issue that frankly, I’m not going to explore). The ones that identify as men have been far creepier and more aggressive.

    So, now I’ve been schooled by the pervs. Wow. Just so y’all know, I delete your comments unread as soon as I identify that you’re a devo. If you want equal time and understanding, start your own blog.

    I have been threatened, insulted, “analyzed” and stalked.

    Yes stalked.

    One of these creeps sent a picture of me that was recently taken. So you know who I am and how to find me. That’s not all that hard creepy stalker perv. Yes, you freaked me out for a short time. Was that not your intention?

    So, if y’all were looking for acceptance, this was certainly not the place. I’m not responsible for helping you to be understood and/or accepted (eeeww) no more than I would responsible for humanizing and sympathizing with any other stalker perv. Your actions overall (the 296+ comments I didn’t publish) have only confirmed that you should probably stay behind your secret pay-walls and away from the rest of us.

    So, whether you’re deserving of a DSM-IV code is outside my purview. But, as far as messaging goes, y’all have a lot of work to do to convince the rest of the world you’re not all the same. Although one or two commenters started to make me question my assumptions, those same people sent repeated messages that confirmed that I have made good decisions so far.

    Comments are now closed. As I said, go start your own blog and quit stalking me.

    We now return to more interesting subjects.

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