Passing, stealth and disability identity

This is a late response to Blogging Against Disablism Day. It’s also a (hopefully not too late) submission for the next Disability Blog Carnival, hosted by Miss Crip Chick, the theme of which is “Disability Identity”. It’s probably not as good a post as it could have been if I had internet access at home at the moment (I’ve been going to internet cafes, cutting and pasting the stuff I've wanted to link to or quote and saving it to a floppy disk, then back home to actually write this… so, sorry if it’s a bit sprawling or disjointed-seeming), but I didn’t want to leave it until too late to submit it for the carnival...

This post was, in part, inspired by Ballastexistenz’s (utterly awesome) post for BADD, “Excuses to be a jerk", which “passing” isn’t the primary subject of, but in which she does say the following about the subject:

In a person who is passing, there is also often tension between who they’re trying to appear to be, and who they are. It can look like the usual angstiness some people go through; after all, most people hide certain aspects of who they are in order to fit in. But passing as non-autistic is a bigger disconnect than pretending to like bands you really hate, or even than pretending to like people you really can’t stand, or to feel feelings different than the ones you know you have.

Passing can mean, in its most extreme forms of disconnect, having no or close to no understanding of most of the words one is using, most of the interactions one is engaging in, etc.

...

Be aware that when the above happens, the disconnect is on the level of a disabled person passing as non-disabled, not a whiny person who just doesn’t realize how much like everyone else they really are. Yes, there are things all humans have in common. No, that doesn’t solve the severity of depression, disconnect, and alienation that autistic people often experience when passing, particularly when the person they’re passing as (or being passed off as by others, since passing can be entirely in other people’s heads, too) understands things they don’t. It’s a lot closer to a deaf person passing for hearing (while entirely missing at least 80% of conversations as a result), or a blind person trying to drive a car without crashing it or letting on that they’re blind, or a person from one culture being thrown into a totally alien culture (where nobody’s ever even heard of one’s own culture) with no preparation and trying to pass as comprehending, than a person with certain abilities trying to pretend they are similar to someone with roughly the same set of abilities but a different personality. Not that that’s easy either, but there’s an order of magnitude or two here that needs to not be missed.

Of course, not all autistic people are in a situation where passing is possible, whether due to their own abilities, the expectations of those around them, or both. And passing has gradations, too. It’s not like there are those who pass and those who don’t pass. It’s more like there are those who pass to different degrees, as different things, and in different situations. Passing can also be wholly unintentional and unnoticed, but I’ll get into that later.

(There is so, so much else in that post that I identify with more strongly and deeply than I could put into words right now, and, in fact, huge sections of it perfectly describe me, but that would be spinning off well outside the subject of this post. Suffice to say that it’s one of the best pieces of writing about autism that I've ever read.)

The first place I encountered the term “passing” was in African-American historical literature (which was one of my perseverations during my teens), referring to light-skinned (but categorised as “black” under the segregationist laws of the time, and also culturally “black”) mixed-race people who passed as white in order to get all the social benefits that that status gave them in an openly racist society and legal system. (The main protagonists of such novels in the late 19th and early 20th centuries were very often a young man or woman who passed as white and whose relationship with a white partner turned to tragedy when their “true” ethnicity was revealed.) The place I most often encounter it (and the related notion of “stealth”) now is in the online trans* community (there are very good posts about the subject by many trans* bloggers, including Questioning Transphobia, No Designation, Galling Galla and plenty of others), where there often seems to be a divide between those who do “pass” and those who don’t, with calls for solidarity and attempts to transcend that divide often frustrated.

While it’s not talked about so much, I believe the same is very often true in the disabled community. Nicola at the BBC Ouch blog recently posted about “hierarchies of impairment” and division between different impairment groups; I have often found that one big division, even if not necessarily talked about in those terms, is between those who have “passing privilege” and those who don’t.

One particularly striking example of this is in this article at the Disabled and Proud website (I believe this article has also been published in Ragged Edge magazine, but couldn’t find it there at first look), in which the author describes her experience at an ADAPT conference:

As we waited for the elevator at the San Francisco Muni station the morning of October 21, my friend, Laura, and I could barely contain our excitement. After a long journey from Chicago, we finally made it to San Francisco for our first national ADAPT action. Even though we had both been actively involved in Chicago ADAPT, and in the activities of the National Disabled Students Union, we couldn't wait to experience the "coming home" feeling that many people talk about after attending their first national ADAPT action. It was a typical foggy day in San Francisco, the type of day that makes it very difficult for someone with an immune system disability - like myself - to climb stairs, so Laura and I decided to wait for the elevator. As we were waiting, a voice from behind us said, "You know, you ABs should really take the stairs and leave the elevator for those of us who need and deserve it." After signing this message to Laura, who is Deaf, she and I turned around and found ourselves face to face with a white, middle-aged man in a wheelchair. "We have a new name for you ABs," a young woman in a chair beside him said to us. "We call you Walkie-Talkies." These were the welcoming words that greeted us when we arrived at our first national ADAPT action. Needless to say, the "coming home" experience for us was less than welcoming.

Technically, Laura and I are "walkies." But we are also young women who openly and proudly identify as people with disabilities - young, disabled women who experience disability discrimination in the wider society on a daily basis. When the discrimination comes from within your own community though, it hurts… it hurts really bad. It takes a lot for someone with a non-apparent disability to get to a place where they openly and proudly identify as disabled. The pressures for us to "pass" and deny our disability - and our community - are tremendous. But to finally get to that place of power and pride and then be called an AB or a "walkie-talkie" by someone who you consider to be your sister or brother is devastating.

I wish I could say that this was an isolated instance of ignorance - which is evident in every community, no matter how "progressive" - but I can't. Nor is this a defining characteristic of ADAPT. This "culture of internal exclusion" that we experienced at the national ADAPT action is something that we deal with all the time within the US disability rights movement as people who are not visibly disabled. Take, for example, the time when I shared an experience on the Berkeley disabled mailing listserv about the person who glue a sign to my car windshield that read, "Mentally Handicapped," only to receive the following response from one of my "brothers" with a disability: "Oh no, it's another one of those 'supposed' invisibly disabled people trying to jump on the disability bandwagon again."

The irony of this is that the disability movement (or at least certain sectors of it) has, deliberately or not, in effect constructed in response to wider society's demand for disabled people to pass as non-disabled, a requirement to pass as disabled - which is rather spectacularly missing the point...

(Thankfully, in DAN, the UK's equivalent to ADAPT, I haven't encountered much of the same attitude, and many of its key members have non-physical or non-visually-obvious impairments. I couldn't really guess as to whether there is a UK/US difference overall in this - certainly both the UK and US disability rights movements had their origins primarily in the struggles of people with obvious physical impairments.)

There is a lot of talk about “visible” and “invisible” impairments, which I find somewhat problematic terminology (see for example Cal Montgomery's article "A Hard Look At Invisible Disability", which puts it better than i could), but still often find myself using; also a popular phrase in the UK seems to be “hidden disability”, which I think is also a bit problematic (although I sometimes describe my own impairment as “hidden, but not very well hidden” ;) ). The trouble with the terms “invisible” and “hidden”, IMO, is that they suggest that the impairments in question are not noticeable at all, whereas the reality usually is that they might not be noticed or recognised by most people, but, by definition, an impairment is noticeable in the area that a person is impaired in (I have difficulty seeing how it could meaningfully be an impairment otherwise). (There's also the risk of confusion between "visibly impaired"/"visible impairment" and "visually impaired"/"visual impairment".) Therefore, I think that the terminology of "passing", as originated in the context of racial segregation in the US and South Africa, and repurposed and elaborated by the queer and trans* movements, is a more useful set of terms in which to talk about the issue...

The problem with “passing” and “stealth”, when it comes to liberation movements, is that it’s essentially an individualistic way of seeking one’s own safety, freedom or place in society by moving out of an oppressed or marginalized group, which inevitably compromises one’s ability to fight for the rights of that whole group. It also implicitly upholds the idea that that group does not deserve equal rights, by saying “the best way to get equal rights is to appear not to be a member of a minority” – rather than demanding equal rights without compromise. (This doesn’t necessarily mean that every person who uses “stealth” is working against the liberation of their minority group, or that they, as individuals, are to blame – it can be very legitimately motivated by personal safety, or the person may genuinely be trying to live as if disability, or gender identity, or whatever, didn’t matter – there is a good discussion in the comments here and here about stealth and trans* identity.)

The awkward thing about passing, when you do have a radical commitment to a minority group as a political identity, is it can actually be counterproductive personally, and that it can be very difficult to explain why you don't actually want to. (I remember posting about this over a year ago at the BBC Ouch message board, and encountering incredulity from several "non-passing" disabled people that I could envy the visibility of their impairments.) I have had responses from disabled people in the street to whom I have tried to hand out leaflets about disability rights campaigns that suggested they viewed me, as someone not obviously disabled at first glance, as a non-disabled "do-gooder" handing out propaganda for some charity or "cure"/"healing"-oriented organisation. (As an attempt to counter that, I have attempted to appear "more disabled" by trying to exaggerate my subtler autistic traits (including many of the things talked about in Ballastexistenz's post) to a level of fairly-obvious visibility, but then felt like a "pretender" or "fraud" for doing so.)

(This also serves to highlight the same problem from the other side - the disabled people to whom I hand leaflets about organisations of disabled people are those who I can tell are disabled, and in fact I have fairly often considered giving a leaflet to someone who looked possibly disabled, due to subtler factors such as slightly unusual movement or facial expressions, then decided against it because of the possible embarrassment of getting the response "but I'm not disabled", possibly accompanied by righteous indignation at having been perceived as such. I don't quite know how to outreach to disabled people who are not visibly impaired...)

This is one of those situations where I can recognise that it's problematic, but not really think of any solutions. Obviously there are things I could do, such as wear an item of clothing with a slogan like "Disabled and Proud", or something autism-related, on it, but that's not always practical, and, in any case, would probably still result in people responding by refusing to believe that I am disabled, or even just not connecting the slogan directly to me (after all, people wear T-shirts with all kinds of things written on them that don't actually describe themselves - even in the political sphere, you can, for instance, wear a "Free Tibet" or "Free Palestine" T-shirt without being Tibetan or Palestinian). I could attempt to cultivate a "more obviously autistic" style of moving, dressing or speaking, but that would seem just as "fake" and counterproductive as trying to move, dress or speak more like a neurotypical person, and just as against the entire goal of both the neurodiversity movement and the social model of disability - disabled people (and non-disabled people, for that matter), being accepted as the people they/we are, and society changing to fit us, rather than the other way round.

I do kind of think that people involved in disability activism, particularly in membership organisations of disabled people such as CILs, whose impairments are not obvious do have some sort of responsibility to declare those impairments, though I'm not sure exactly how far that responsibility goes (how much detail is acceptable, for instance) - which, to some extent, arguably goes against the social model principle that impairment isn't what matters in defining disability. I think, however, that this (and the "don't talk about impairment" attitude it engenders, in which for instance it's almost taboo to ask someone what their impairment is, being automatically seen as "medical model") is one of the weaknesses of the most simplistic form of the social model, and that "bringing impairment back in" to the social model is necessary - I've touched on this before here (near the bottom of the post), and am planning to return to it in more detail, but the work of feminist disability theorists such as Jenny Morris is, IMO, vital here. The taboo against talking about impairment has led, in some cases in the UK, to non-disabled people infiltrating and taking over disabled people's organisations by claiming to be disabled without disclosing an impairment.

On the other hand, this definitely needs to be approached with caution, as it could easily lead to the kind of hierarchy-impairment situation Nicola describes, in which "invisibly" impaired, but not "visibly" impaired, people have the onus placed on them to justify that they have a "real" disability. (Not to mention that, in a fully social model world, IMO there actually wouldn't be any real dividing line between an impaired and a non-impaired person...)

There are undoubtedly privileges associated with being able to pass as non-disabled (and these are proportional to the extent to which one can pass, as passing isn't a binary state) - and, when having or not having those privileges can have serious, even critical, effects on one's life chances, I don't think it's reasonable to insist that people who have access to them outright reject those privileges. It gets even more difficult when the passing is unintentional, as opposed to deliberate "stealth" - and, of course, there are all sorts of blurry areas between the two. Where is the line between simply not disclosing an impairment because it isn't relevant (for example, on a job application form where the impairment doesn't directly affect any of the tasks in the job), and deliberately deceiving people? (People have been dismissed over this issue.)

The thing is, passing is never complete - if a person could completely pass as non-disabled in every aspect of life, then they wouldn't be disabled. And not only do those who pass in some situations nearly always not pass in other situations, the same person can pass one day, but not the next day, in the same situation, because there is fluctuation in nearly all impairments, even most of those generally perceived as "stable" (Ballastexistenz explains this better and in more detail, too). To quote the title of one trans* activist's blog, "Nobody Passes, Darling". And I haven't even touched on the issue of undiagnosed impairments - with which people can, as I was for the majority of my life, be passing, or even not passing, without having any idea that they are doing so whatsoever.

In a truly liberated world, no one would need to “pass”, because there would be nothing to “pass” as – there would be no privileged group or class that it would benefit anyone to appear to be a member of. Therefore the concept of “stealth” would be irrelevant, because how much a person would choose to disclose about hirself in any area of life would be a free, individual choice. However, I don’t even really know exactly what that world would look like, let alone if there’s much chance of achieving it…

Edit for more relevant links: Trinity has also posted about “passing” for this carnival here, and Tera of Sweet Perdition posted about the problem with the “visible”/”invisible” dichotomy for a recent carnival here…

(I'll post links to the several other awesome blog carnivals I've read recently, when I can get online for long enough to find them all again...)