Originally published in Active Living Magazine, 2006
Some people think I'm attractive.
No surprise there, in all honesty, who wouldn't? Seriously, I'm sharp as a tack, funny, drop dead gorgeous and I have my own money.
So what's not to like?
Well, except maybe, that I happen to be an amputee, and according to a number of "learned" professionals and a small but vocal segment of the amputee community, if you think that adds to my attractiveness, you have a mental illness.
How do you like them apples? I'm different. And even though society promotes individuality, if you like me, or anyone like me, you may be sick and perverted. In fact, there are actual words to describe your affliction: try acrotophile or fetishist... your attraction is even categorized by the psychiatric community as a deviation. You are the dreaded devotee.
Yup, that's right, if you get a stiffy for an amputee, (no matter how hot), you're a freak.
So, they say finding an amputee attractive is a deviation, only afflicting mentally ill people. Wonderful. That just makes my day.
As an amputee, apparently I am so horribly disgusting and deformed that anyone who is attracted to me must be sick. What kind of perverted logic is that? I don't know about you, but I refuse to allow that sort of backward thinking to pollute my view of myself.
Now, at first glance, it's understandable that some people may have a problem with amputees based on their stereotypical feelings about people with disabilities (PWD's).
Society in general sees pwds as asexual, with an implication that any interaction with us on that level is inherently wrong. Deviant in fact. Use the word "amputee" in a search on the internet and you'll find most of the hits take you to sex sites... directories, galleries, that sort of thing. But when you look at the sites themselves, you find amputees and other pwds under the "Fetish" or "Other" category. This sad little fact is just one reason why the whole topic is taboo. As far as Joe Public is concerned, if you're looking for pwds, you'll have to go to the implied deviance areas.
But is a person who wants to be with me a deviant by definition?
When I first heard about devotees, I was shocked. The thought of someone being attracted to me because of my disability made me very uncomfortable, and for the longest time, I couldn't figure out why. I finally came to realize that it came down to a strange sense of personal affront.
How dare anyone think my disability is sexy. How dare anyone presume to get something good from my situation. Who the hell are they to get off on my tragedy and do it so openly? And without my permission?
The hostility I found in talking with other amputees who knew about devotees led me to believe that these people really were quite sick. Why else would everyone be so upset.
Then, after a particularly volatile exchange on the topic, one of "them" sent me an email message.
He wanted to know why I had a problem with people thinking that I was attractive. How warped was my own self-image that I thought anyone who thought my unique attributes constituted something positive was sick? He also suggested that I actually get first-hand information on which to base my opinions, rather than equating the actions of devotees with fetishists.
Oooh, you sneaky little stumpfucker you.., I thought, trying your perverse psychology on me. Well, it won't work. I'm not going to be told that it's my problem that you can't get a date in the real world.
Then I realized what I was doing. I was playing into the old stereotype that I really was not as good a anyone else. Otherwise, why would it be a sickness?
So, I began to educate myself on the "issue" and started to see the big picture. Or at least a blurry semblance of it. And as I harvested more information, the reasons for the misconceptions became clearer and clearer.
An internet search for "devotees" brings up a few studies on the "phenomenon". Most combine disability devotees with known psychiatric disorders, adding more fuel to the fire by implying that devotees are actually mentally ill.
ALL the studies ignore the obvious OTHER implication - that there's something wrong with us (PWDs) on a whole - for the attraction to be an illness for someone else.
The four basic food groups in this little mad hatter's tea party (according to the academics) are: wannabes, pretenders, fetishists and devotees.
Wannabes actually want to have a disability and some will even go to the extreme of causing their own amputations. These people have a body image disorder and they feel they can't be "right" until they have the disability they feel is appropriate.
Pretenders find it necessary to play at being disabled, mostly for sexual gratification, riding around in wheelchairs, binding limbs to appear as though they're amputated, buying and wearing orthotic devices and crutches. They want all the "accessories" of the disability world, without the day to day reality.
Fetishists are only able to "function" when a specific set of circumstances are met. Residual limb length or number of amputations, a certain level of paralysis, a particular type of brace, high heels etc.. - each one has his or her own basic requirement for enjoying life.
Devotees are initially attracted to the disability, but liken it to breast size, eye color or other physical attributes. The amputation or other disability is an attraction trigger, but it's not a requirement for a relationship.
A number of studies claim that devotees are fetishists because they are attracted to the disability and while that may be the case, most researchers don't delve into the underlying reasons for the attraction. Many of these people have had positive early exposure to people with disabilities, such as parents or other family members or even people on television.
The difference between devotees and fetishists lies in the fact that for one, a disability is a preference, but for the other, it's a requirement. And therein lies the distinction between normal and deviant behavior.
Armed with this basic understanding of the "interested" players and my newfound Goddess Complex, I went looking elsewhere for information.
First stop, the now defunct Ampersand, an openly adult amputee-oriented chatroom. This site was a free-for-all. Rude, intrusive questioners demanding answers, pretenders... wannabes... all kinds of strange ideas.. one guy who chopped his own leg off, another gal who rides around in a wheelchair for fun because she thinks it makes her look sexy, and so on, and so on.
I was immediately inundated with requests to "go private" (a euphamism for online sex) by numerous strangers who only wanted to know the level of my amputations. I remember thinking: no wonder amps are afraid of devotees... these people are insane.
Then I became aware of the other avenues for dissemination of disability material - "special-interest" groups. And there are lots of them. Leg braces, casts, armless women, legless women, little people with fat men, fat women with tiny men, on and on. It seemed like every disability imaginable had an admirer group with "encounters" to be shared and photos to be traded.
Informing these people that what they were doing was stalking, and potentially dangerous to the person whose information is being spread all over the internet resulted in some shocking responses.
Some people argued angrily that they had a RIGHT to access us that way because of our rarity - our lack of interest in becoming their pin-up girls/guys meant nothing. One known harasser said "There aren't that many of you around, so I have the right to take your picture when I come across one of you".
And take pictures they do, causing many unsuspecting people with disabilities to become "famous" without even knowing it. Myself included. I received an email asking if I'd seen a particular website, which, as it turned out, was filled with photos of amputees that people could download. Most of the photos were dated and tremendously unflattering - some were obviously taken from medical files. The site was a gruesome spectacle, designed to illustrate an ugliness associated with disability.
The photos were sorted by amputation level, so I went to the DAK (double above knee) area, and there I was - a photo of me taken years earlier at a sports event (I was underage at the time). I was even more surprised to find that my photo was in the "top ten" downloads of all time from the site. I was not, however - as the site owner suggested I ought to be - "flattered that anyone thought I was attractive" especially because of my amputations. He was quite blunt about the amount of money he was making selling the photos on a CD for ten dollars a pop.
Thankful was NOT what I was feeling. Insulted, invaded, objectified, used by ignorant strangers for their own gain - those were the feelings that I had. And ten bucks?!? That's all we're worth? Hours and hours of solo fun for just ten bucks. Pretty cheap round of pocket pool, I'd say.
Many of these fetishists are so open and obnoxious that they're known by name and face to the amputee community.
Amputee conferences and meetings are notorious for attracting rumpled, creepy strangers who lurk in hotel bars and elevators, telling sad stories of amputee wives "too scared" to be there themselves. Known offenders ply new amputees with alcohol while posing as big Hollywood producers attempting to orchestrate what they consider to be a sexual encounter. Even more prolific are the camera-carrying fetishists hiding behind potted plants, clicking away at unsuspecting amputees.
The internet is a hot spot, with countless free sites that ask you to list personal information, making them immediate targets for overly aggressive people who then stalk them - either electronically or in some instances, in person - actually forcing encounters to take photos and to obtain other information.
Many of these photos end up online, on "sightings" boards where identifying information such as time of day, vehicle, and sometimes even names and employment information are given by the stalker so that others can avail themselves of the freeby.
The backlash from the disability community over this behavior has been severe. Responses range from revulsion to outright hostility toward anyone who might be one of "them". The only problem is that we don't know exactly who "they" are.
Conferences now see amputees, led by the openly anti-devotee www.amputee-online.com webmaster Ian Gregson, wearing t-shirts with anti-devotee slogans. These shirts are designed both to inform amputees and to announce to the fetishists that they're no longer anonymous and that they aren't welcome. Some organizations have adopted an "accredited photographers only" policy at their annual meetings.
Gregson's crusade began when, as the moderator of the amputee listserve, he was appalled when two fetishists started discussing the specific amputation level they "required". They were asked to take their conversation to private email in view of the offensive nature of the discussion. They refused. In the interests of the thousands of amputees on the list, they were removed and thus the anti-devotee position of the listserve was cemented.
Disabled sports events and trade shows are also well known harassment zones. Attendance at one of these events practically guarantees that you will be at risk of being exploited by people who think they have a right to do what they do. Photos are sold online, by the photographers themselves, or on CD's and "online-collections" compiled by other internet slugs who admit they steal the pictures they sell from personal sites operated by people with disabilities (as well as from their competitors' picture sites).
Questions regarding these illegal activities meet with responses that range from blatant disregard for the laws to deliberate misinterpretation of the appropriate statutes. Operators claim that compiling photos stolen from other sites - which they erroneously claim to be public domain proving their lack of business knowledge - is a legal and acceptable practice. It isn't.
Selling these stolen goods is in violation of numerous federal and international laws against child pornography, copyright infringement, invasion of privacy and credit card fraud.
One particular case is a napster-like group that exists ONLY for the purpose of trading these photographs, many of which have no legal documentation, and most of which were taken without the permission of the model.
This arrogant disregard for our rights and our privacy lies at the heart of the problem. How can someone who claims to think we're all so wonderful, turn around and steal from us? And how can they do it with such disdain?
The answer is simple: because they are fetishists and thieves with a sense of entitlement. It is this sense of entitlement that is one of the biggest hurdles devotees have to overcome - and the damage is already so severe that it's an uphill battle.
The predatory and menacing behavior has offended the disability community, making it almost universally anti-devotee - while in fact, the guilty parties are fetishists.
Are we splitting hairs? Perhaps, but it's still a distinction with a most definite difference - a distinction that, when clear, changes the focus from "them" accepting us, to us accepting ourselves.
Unfortunately, the "encounters" most amputees have are with fetishists, who are just looking for a stump and the tactics some of these people use are enough to make anyone want to carry a big stick, just in case.
On one hand, we're attractive. On the other, if anyone thinks we are, they're sick. The signals are clearly crossed and the messages are so mixed that everyone seems lost. Amputees are sexy. Amputees aren't sexy. Devotees are freaks. Devotees aren't freaks. We're okay, they're not okay. Who's right?
As a congenital amputee, my body image is pretty strong, but someone whose life has recently been altered by an amputation may not yet have that strength of self, and may feel that anyone who finds them attractive must be wrong or weird. Who's right? And based on the proliferation of websites and groups that cater to devotees, lots of other people feel the same way.
But that same proliferation is also influencing a positive change in the portrayal of people with disabilities.
The usual fare of stereotypical deformed "models" from the stolen picture sites that accept any and all comers is rapidly being replaced by more exclusive, model run sites like amputeegoddess.com and ericazone.com and numerous others.
These sites are offering photos of actual models, fashion and otherwise, who happen to have disabilities. Unlike their counterparts, these sites not only have the permission of the participating model, they also offer models with disabilities real income opportunities.
All these factors are leading to more open communication between amputees and devotees, which could be, in reality, if given the chance, a win-win situation for all involved, especially when one person needs some assistance and the other person feels fulfilled being the one helping.
Take Jeri and Jim Grina (names have been used with permission). They met at an admirer meeting, fell in love and married a few years later. Jeri is a SAK (single above knee) amputee and Jim is a bit of a whiz with materials. Jeri was having problems with the fit of her socket, so Jim made her a new one. Now, after a period of trial an error, the socket and limb he designed for her are so popular among amputees that he's adapting them for others at no cost so they can be more comfortable as well.
Another woman I know is a quad amputee. Her boyfriend is a devotee. He loves her and he loves helping her. She loves him and his help has enabled her to be the success that she is.
Why does someone's label have to enter into it? And what, exactly, is wrong with anyone wanting to be with someone with a disability, as long as everone involved is capable of making an informed choice?
As one devotee put it, "I'm not interested in someone who collapses in tears when she's having a bad hair day. I'm looking for someone with life experience."
So who are these devotees? Could be anyone. Some extremely well-known, talented, capable prosthetists are admitted devotees, as are some doctors, teachers, bus drivers, cops, moms and dads. Are they ALL freaks? Of course not. Should we be aware? Of course. Should we freak out when someone says they think we're cute because we've got attributes that make us different? No.
I think what we have to do is stop being over-sensitive and realize that people are just people... some are caring and some are idiots. It's like food. Some is good, some, well, not so good. As adults, it's our choice whether or not we partake.