The Problem of Presence

Devotees, like everyone, have an obligation not to bring harm or needless suffering upon others. There are a lot of ways the argument can evolve from this premise, but I feel that an imperative starting point, especially given the state of relations between devotees and the disabled in the information age, is to examine how we violate this obligation as it regards the disabled. In the past I've talked about both the explicit ways in which devotees impair and harm the disabled. Though there is still more to consider.

Now the basic premise I've set up in the past is one which says that you do not take what is not freely given. Unless you have consent, it is not right to copy and trade someone's pictures, videos, etc. This does even extend into the issue of piracy, and the byzantine network of groups at Yahoo are no stranger to leaked photosets, however I would argue that it is OK to set speculation on piracy aside for the time being. There are much more pertinent issues to consider.

Prior to the internet we did not see the same kind of widespread networks for fetishists, whereby a man in Sweden could form a directory that would connect thousands of people from the U.K. and Germany to the U.S. and Australia in an instant. Devoteeism as we know it today is a thoroughly modern phenomenon. Indeed while it still relies on old methods, it has expanded with the internet, for better, or worse, into Facebook, and MySpace, Flickr and most obviously YouTube.

These are fantastic tools for sharing and allow devotees, and really every other fetish group to do the same. Fetishists have become so ubiquitous that they have created their own social networks. For those of you who remember how the dev webrings and IRC chats ran in the 90's, it seems like things have definitely come a long way since then. The problem is that everyone else has come along too, including the disabled.

I like to believe that devotees and the disabled can peacefully coexist without hurting each other, though realistically I know this won't be possible without a bit of work.

The fact is that where YouTube and every other Web 2.0 success story have done wonders for devs, they have done wonders for everyone. Now we're all existing in much closer proximity. Devs and the disabled are no longer cordoned off into our own separate islands of webspace, but for once we're all sharing certain areas, like YouTube. The problem, as always, is that some devs don't know, or don't care, when they might be hurting or interfering with the disabled.

There are a lot of obvious ways this occurs. There are plenty of devs who will contact disabled women on YouTube pretending to be disabled and hoping to make contact. It's a long heart breaking story, which anyone familiar enough with the issue has no doubt heard or participated in more times than they'd care to admit. While this is one of the more explosive consequences of the presence of coercive devs, and perhaps even a byproduct of devs in general, it is not where the negative effects end.

In The Psychology of Disability, Carolyn Vash recounts how, while initially acquiring a disability may be a traumatizing experience leading many down a long path of depression, there is a light at the end of the tunnel. People who acquire disabilities do learn to adapt and overcome their setbacks and blossom into a happy and fulfilling life. One of the key difficulties she identifies in this process is that of convincing the newly disabled to accept that this is a possibility, though she points out one of the best tools in helping them adapt and overcome is being in contact with others who have endured similar setbacks and emerged fulfilled, sometimes even more than before.

It does not take any magnificent stroke of the imagination to realize how YouTube, Facebook, or Flickr could play a significant role in helping people who have acquired disabilities adapt and overcome by allowing them to connect with others and work toward healing and self acceptance. Yet we can also understand just how much damage devotees can cause in this delicate process by poisoning the well. Perhaps at this time, more than any other, our presence alone is most damaging.

There have been plenty of cases of people in rehab for spinal cord injuries and amputations who have uploaded a video of themselves on an FES bike, or parallel bars, or just recuperating in the hospital who have found themselves the unwitting objects of the devoted gaze. Devotees already earn a bad name for impairing the lives of the disabled online, but as some have pointed out, as our society becomes increasingly integrated with the internet, and embraces public sharing, what we mean by “life online” grows less and less distinguishable from “life offline”. When I was growing up we used to measure our amount of time spent “on the computer”, though with the advent of smart phones it is easier to speak of our time “away from a computer”.

Our presence and its effect has the potential to expand greatly in the next few decades depending on the supply of rare earth metals amongst other things. Whatever the case, we have an obligation to ensure that we do not negatively impact the lives of the disabled through our actions, which at some points may extend to include our presence alone.

When you see videos posted from rehab, do not favorite them, do not 'like' them, do not save them, do not share them, do not post comments to them. Keep them out of the dev network entirely. These are people who are in the midst of an oftentimes painful and jarring transition, one of the more vulnerable periods in someone's life, and it is to be left alone that they and others enduring such a trial may learn and prosper from this. Your presence serves only to pollute the process and bring harm to those you would love.

Furthermore...

There is a very common argument that devotees use when they are berated by the disabled for having their feelings at all. It has been stated many ways in many different languages but generally runs as follows, “The disabled dislike devotees because they cannot accept their disability.” The belief here is that if, and only if, the disabled could come to understand that their bodies are ultimately no different in value from those of the able bodied, that there is no shame to be had in crutches or a leg bag, that they possess equal capacity for love, discovery, style, grace, power, and yes even sexiness, that they would come to realize that there is nothing wrong with someone appreciating what they have to offer.

Some disabled people have come around to the idea, though I find it ultimately too reductive and simplistic to apply to everyone. After all, there are many other terrible reasons why a disabled person may dislike devotees which has nothing to do with how they view their bodies. However, if you accept the common dev argument, then does it not follow that you ought not interfere with the very delicate process of adjustment to one's new body which can lead to such negative opinions of devs?

Harassing the disabled in rehab only works against your own interests.

Pushing The Wrong Way

This April the Sundance Channel is planning to air a new 14 episode reality show called “Push Girls” which seeks to provide a glimpse into what life is like in Hollywood on four wheels. It stars Auti Angel, Tiphany Adams, Angela Rockwood, and Mia Shaikewitz, who devotees will likely remember from Ms. Angel's "Colours N. Motion" dance crew, amongst other efforts to popularize wheelchair dance throughout the years.

To quote from the show's website, “In the same way "Murderball," winner of the 2005 Audience Award for Best Documentary at the Sundance Film Festival, took the lid off the competitive world of “wheelchair rugby,” Sundance Channel is bringing an unfettered, uncensored glimpse at what it means to be sexy, ambitious and living with paralysis in Hollywood with PUSH GIRLS, a new original non-fiction series from producer Gay Rosenthal.”

If you're not familiar, Mrs. Rosenthal's work I'll give you a tiny review.

Long ago, in the 90's, TLC was more than a colorful R&B trio, it was also “The Learning Channel”. Playing Robin to the Discovery Channel's Batman, it cut its teeth playing educational documentaries that fell outside of Discovery's emphasis on nature. As with History, and other educational channels, it gradually warped and morphed its way out from under the onus of educational content until the mid 2000's when its focus shifted to reality based dramas like Gay Rosenthal's Little People, Big World. Here is how the show describes itself, “Parents Matt and Amy Roloff are both little people -- 4 feet tall -- but they are determined to succeed in a world that isn't always accepting of differences.”

It was a success, and two years later along came Gay Rosenthal's Ruby on the Style Network. Again, I will let the show speak for itself. “Savannah resident Ruby Gettinger is beautiful, charming, charismatic and at one time weighed a life-threatening 500 pounds. With no-holds-barred honesty and unwavering optimism, Ruby shares the story of her personal struggle to lose weight and get healthy,”

And so, now we come to 2012, with the Sundance Channel bravely seeking to step out and do what no one has done before, to make a real change in the world of entertainment, by showing how poorly integrated it is. Except, it's been done before, and it doesn't change anything.

Shows like these have already been rightly criticized for having more to do with letting us stare while making us feel good about it than imparting any tangible change. In some ways it recalls the voyeur scene from The Cost Of Living, or a less honest version of Jerry Springer. Their tacit premise is that through familiarity boundaries will be broken. Yet this plausible premise is shackled by a fundamentally flawed approach.

There is a common complaint laid against devotees which says that we only see the disability, not the person. While I can't say that it's never been true, I certainly doubt that it's always been true. I feel much more confident making that claim about the entertainment industry. The Daily Mail happily misquoted Angela Rockwell as saying, “Our common denominator is our wheelchairs...” She meant to say “is not”, as you can see in the interview they did at Sundance, but the mere presence of the error suggests a telling Freudian slip on author's part.

I applaud their effort because as anyone could tell you, lack of exposure is definitely part of the problem. However, this seeks to solve that problem the wrong way. It is dangerously simplistic to say the only problem is one of underrepresentation. Certainly that exists, but it works to magnify the additional problem of poor representation.

We rarely see the disabled portrayed in our media, and when we do it is most often the story of their injury or an update about their recovery on the nightly news. Say what you will about devotees, but if you look at say, the fiction of an out proud devotee like Ruth Madison, and compare it to what news channels often run, I think you'll find more than a few differences. What you'll find is the root of the problem.

When we cast minorities as the other, when we point out and focus on their differences, we run backward against attempts at integration. They are treated as separate and thus unequal. They are not placed alongside us, but on a stage in front of us, often accompanied by a great degree of fanfare. I'm reminded of Britain's Missing Top Model, which spent a lot of time and money in marketing pointing out how groundbreaking they were to ever think of having a reality show about the disabled. You can practically hear them saying,“We're an incredibly forward thinking network, see we treat THESE DISABLED PEOPLE OVER HERE, THE ONE MISSING AN ARM, AND THE WHEELCHAIR-PERSON, I MEAN UH PERSON IN A WHEELCHAIR just like anyone else really.” There are though, some wonderfully notable exceptions to this.

In the UK there was Hollyoaks, a soap/drama about good looking rich white kids dealing with all the ups and downs of being good looking rich white kids. They hired an actor who was actually disabled and barely mentioned her disability, and even then, only lightly. Then there was Beeswax, an indie film which was notable for having a paraplegic protagonist whose injury, disability, or possible hope for a cure, never came up. It never mattered, and it was an utter breath of fresh air that sadly soon ran stale. For every Hollyoaks, or Beeswax, we have easily ten or twenty cases of the helpless invalid, the relentless fight for a cure, or the athlete who won't let anything hold them back.

The honest approach Push Girls seeks is of course better than practically everything that's been put to film since the television was invented, but it will be just another a drop in the bucket unless the media is willing to take more concrete steps to change the climate it's operating in. Here's hoping.

“All television is educational, the only question is what is it teaching?” - Nicholas Johnson, former chair of the FCC

On Film & Consent

There is a wonderful Dance/Art film I that I think everyone interested in the politics of dis/ability would enjoy. “The Cost Of Living” is a highly lauded exploration of many social issues through dance, dis/ability playing a prominent role. It uniquely blends dance, with acting, and even a light narrative, to provoke our thought through a mixture of approaches, some subtle, some very blunt.

One of the more disturbing points in the film comes when the character “David”, played by David Toole who has no legs, is confronted by a man with a video camera who continually follows him, blocking his way, while we hear a series of rude questions. The scene works on a number of levels.

To begin with, the questions asked such as, “Why do you have no legs?”, “Do you blame God for how you were born?” “Can you masturbate?” “Do you have an asshole or do you shit into a bag?” have a very literal context to them. It may sound striking to some, but such questions by strangers are not an uncommon part of life for the disabled.

The questions though, are asked by a narrator, and the cameraman appears to remain silent. These are questions that we all ask, though perhaps not so deliberately. The narrator may be providing the inner monologue of the cameraman, but also in some ways that of David when he is so rudely observed. The message here, and indeed a fundamental element of dance, is that we do not need to speak to make ourselves heard.

The other important point here is that while the camera obviously functions as a metaphor for how the able bodied relate to disability, and for how it feels to be stared at, it can, in the context of devoteeism be understood very literally as well.

There is a problem amongst devotees, as in society, which is as old as the camera itself, and which has grown in proportion to its use and ubiquity. Being filmed or photographed by rude strangers is, sadly, not an uncommon part of life for the disabled. There are still videos on YouTube to this day of disabled people who have been covertly filmed by devotees for purely sexual purposes. Judging by the video quality and clothing worn by people, some these were taken in early nineties or late eighties. They have traded hands enough times that they have survived the shift from analog to digital, and they are still around. 

As I understand it, legally there is nothing wrong with this. When you are in public you lose your right to a reasonable expectation of privacy. In fact, I've heard the same rule applies if you are sitting in your living room with the windows open. What is legal though may not always be what is right.

My premise is that suffering, in its many forms, is something “bad” and ought to be avoided whenever possible. Furthermore, humans ought to be treated with a certain set of rights some of which grant them freedom from suffering needlessly. I claim that the kind of filming in question, and the proliferation of its product harms both parties in a number of ways.

To begin, filming harms the subject.

The most obvious scenario is one wherein the subject is filmed, and becomes aware of the filming, or its intent. This can happen before, during, or after the fact, and still be damaging. It feels silly to have to explain this, but believe it or not it can be incredibly scarring to find out that you have a secret cadre of online admirers discussing in detail your every recorded move. What is missing in this interaction is a word which is important in many areas of life, but most especially in all things sexual. That word is consent.

As a word and concept, consent has a long history of being linked to sex. Webster and the OED have traced its earliest use to the thirteenth century, being derived from the Latin “consentire” which held virtually the same meaning, suggesting its use in Latin goes back even further. It is linked with ideas like “age of consent”, whose earliest use was in 1504 and refers to “the age at which one is legally competent to give consent especially to marriage or to sexual intercourse”

What is interesting is that often with these films it is obvious that the person in question is taking great care to avoid being seen or noticed. I think this is important because it points to the thought process of the person who is filming. They do not expect to gain consent for their actions.

They seek to blend in or avoid being seen filming because they know there is no consent. Assuming that the first page of Google results are correct, and we have no reasonable expectation of privacy in public, we do still have some say over how our images are distributed. If you've ever been around a documentary film crew, you'll know how adamant they are about securing someone's permission (consent) to film them. I think that we ought to have an extended provision in our law which grants us security from having our image filmed, shared and traded for sexual purposes without prior consent.

Regardless, it can be argued that if the subject does not find out they are being filmed, then there is no harm. This is problematic for a number of reasons. To begin with, there is no way of guaranteeing that the subject or one of their relations will never find out that they will be, are being, or have been, filmed. Again, there are videos which date, conservatively speaking, from the early nineties, which are still bouncing around the net today, sometimes with multiple copies in multiple locations, and more new ones are popping up all the time. This was once a stronger argument but as the internet becomes more and more user friendly and embraces sharing, it becomes increasingly weaker.

Still though, even in the absence of the internet I argue that it is harmful and there are two reasons for this. To begin with, by ignoring the subject's lack of consent, or rather, by working actively in opposition to it, you are not respecting them as human beings. By filming, sharing, or even viewing these, you are ignoring the person on the screen. This is literally dehumanizing.

What I have described thus far encompasses most of the common arguments I have met with regarding this pattern of behavior. I have seen the discussion go around a number of times, more often in disabled circles than devotee ones, and with rare exception does it stray beyond these basic arguments. I feel though that there is something we have yet to consider.

While engaging in any part of this process of filming is indeed disrespectful, dehumanizing, and harmful to the subject, but it also is not healthy for the person who does the filming. I think that when we treat others in such a way we are not respecting ourselves. There is more to us than some crazed and lecherous passion which ignores our victims and snaps back at them when they complain.

Outside of its own circles though devoteeism is practically linked with indignity. You'll most assuredly be trolled, flamed, stalked, and otherwise harassed for talking openly about it. Your friends, family, and anyone else in your social circle are very likely to leave you or grow distant. Merely the mention of this has been the cause for more than one divorce. Furthermore, as I understand it, there is nothing which will protect you from being fired for your feelings. It is dangerous to be a devotee.

On one hand devotees feel this, and know that it is wrong. We seek to be treated fairly and equally, on a just basis, a basis which is often informed by if not in advocacy of, human rights. Yet I have seen many with this sentiment turn a blind eye when their actions violate the rights of another. I once saw a dev board online where a man with an SCI who felt hurt by his ex, who also had an SCI, posted all of her contact information and even some pictures. We were the hounds to which the forsaken were thrown. We were a weapon. We were the worst thing that could happen to someone.

Consider for a moment the effects of this.

I have read a few books regarding the interaction between people and disability at a personal and sociological level. One interesting theory I found discussed how society can be an actively disabling agent. When we treat people like they are disabled, when we link it with concepts of frailty, dependence, and indignity, we are a source of impairment stronger than any condition they may have. We can build all the ramps we want, but that is hardly where the change must end.

So, perhaps we can understand that as we in society can be complicit in disabling, and its deleterious effects on the individual, so too can those who are not devotees understand that they are complicit in indignity, and the following undignified behavior. When we are constantly told that we are less than human, it is contradictory to at the same time expect us to act as humans.

I want to be very clear about this next point. This does not excuse the actions of someone who takes part in this process of covert filming etc. Regardless of how poorly you are treated that does not give you the right violate the rights of another. This is true if you are a devotee, or a jilted ex-boyfriend.

The solution I see involves a recognition and respect of the humanity in each of us.

The fact is that as devotees are stripped of their dignity, they are often stripped of their ability to love. It is believed that any attraction the devotee feels toward someone with a disability is only fetishistic in nature. There is a denial of the possibility of there ever being anything more.

I claim that if you really love someone, you can't help but respect them as people. To love is to respect. If, as devotees, we do love someone, be they able bodied or otherwise, we will absolutely respect their wishes.

In closing I did want to include this interesting little anecdote I found in the first edition of The Psychology of Disability by Carolyn L. Vash which I will quote at length.

“Another side of human acceptance is illustrated by a story told by Marya. A bilateral, above-knee amputee, she had been married to Emory for over three years when he confessed to her once night that he had, since early adolescence, entertained fantasies of having relations with women such as herself; and that her disability had been a prepotent source of his attraction to her initially. By then they had established a solid marital relationship and were viewed as an ideal couple by many of their friends. Marya recalled,

'I wanted to die. I wanted to vomit. Actually, I wanted to kill him. But somehow, the next morning, when he begged me not to leave him, because he had grown to love me for many other reasons, I weakened. He had trusted me enough to tell me something that still bothered- no, terrified-him. He had given me love and support and now he was asking me to accept his disability-a psychological problem that he was repulsed by and didn't understand. I agreed to stay if he would go to a psychiatrist. That was a ten years ago, I don't know that he has completely resolved all of his hangups, but our marriage is a good one...and whatever crazy thing he has for my stumps, he is a lovely guy I'm glad I held onto.'”

If you really don't believe me you can find this quote on page 97 of the second edition which Google has provided.

The Basic Idea

The basic idea here is to explore those realms of “devoteeism” which I feel are all too often ignored. Primarily, I am concerned with the ethical concerns of devoteeism which, if they are considered at all, are often left for last (at least in our conversations). I tossed the idea of this blog around for a long time, but have continually put it off. I have no idea how frequently I'll be posting, or how long each entry will be, so I do apologize for that unpredictable nature.

I hope to begin a dialogue about how we, as devotees, act, and what the effects of those actions are on others. I have no qualms though about deleting comments from people who are being disruptive in any manner. I do happily invite dissenting opinions and other perspectives, so long as you conduct yourself calmly and maintain a respectful atmosphere toward all.