Euthanasia is NOT the same thing as assisted suicide.

As there have been several recent* stories in the mainstream news about assisted suicide (such as this one, found via BBC Ouch, this one and this one, found via FRIDA, and this rather surreal one, found via the "Breaking News" blog at Fortean Times), i've been thinking about my views on the subject, and decided to try to dig up an old post of mine from a couple of years ago, in which i tried to sum up my position, on Barbelith:

Right, i'm going to try to articulate my position now.

I believe euthanasia is utterly different from assisted suicide (often wrongly conflated with it), and that the difference is basically that the latter is suicide and the former is basically murder.

I believe the only consistent libertarian position that can be taken on life-and-death issues is that the individual, and only the individual, has an absolute right over hir own body and hir own life (and, to make this possible, the only limit to that is that ze absolutely and categorically has not got a right over any other individual's body or life).

This means that i do believe every person, regardless of disability, illness or lack thereof, has the right to suicide, as the right to life, IMO, is rendered utterly meaningless if it is not accompanied by its converse, the right not to choose life. In the case of a person too severely physically disabled to commit suicide without help, therefore i believe that, just as ze has a human right (IMO) to free assistance with every other task ze wants to but is physically unable to do (as far as is possible), ze has a right to be assisted to commit suicide (although i do recognise the potential ethical difficulties in requiring someone employed as a personal assistant to effectively end their own employment, and to do something they may have major moral problems with... so i'm not sure that anyone should be required to assist in an individual's suicide).

Where i think assisted suicide as a right does get into extremely dodgy ground is the issue of doctors or family members putting pressure on a person to commit suicide (to free up hospital beds, say, or relieve the burden of caring responsibilities), or of people's choice to die being motivated primarily be society not accommodating their needs or impressing on them that their life is not worth living or that they don't deserve to live (part of my response to that is, of course, a call for change in social attitudes towards illness and disability; another part is the assertion that assisted suicide should be carried out by someone who the disabled person has authority over, such as a personal assistant, rather than by someone who has authority over them, such as a doctor).

However, assisted suicide is not euthanasia - euthanasia is the killing of one person by another, not by hirself. Euthanasia, to me, is totally morally unacceptable because it is a total violation of the principle of autonomy over one's own body/self - it is not carried out at the request of the patient (or if it is, it should be categorised as assisted suicide), but at the decision of a doctor based on criteria of whether there is any chance of recovery or whether "suffering" is unbearable - criteria which to me are irrelevant, because to me the only possible judge of whether the suffering of life is unbearable is the "sufferer" hirself.

If the person in question has no capacity to consent or no ability to communicate, as in the case of a small child (such as Charlotte Wyatt) or a person who is unconscious or in a vegetative state (such as Terri Schiavo), then IMO the presumption has to be in favour of life - because, if the person's desire, were they conscious or able to consent/communicate, was to die, then they would be being kept alive against their will, but they would not be in a state to know or express that will, whereas if their desire, were they conscious or able to consent/communicate, was to live, and they were "allowed to die", then they would be being killed against their will - and the only word for that is murder.

IMO it makes absolutely no difference if the motive is "ending the person's suffering" as opposed to "hating or wanting to exterminate the person" - in fact, if anything, IMO, the former is worse - paternalism on such a level that the state/doctors/whoever actually gets to overrule your own (actual or speculative) wishes on whether you want to live or not (reminiscent of when Hell is taken over by the angels in Gaiman's Sandman: Season of Mists...) Only the person suffering can decide if hir suffering is great enough to render their life unliveable or not, and if there is no way of finding out their feelings on the matter, or they are not sufficiently capable of rational thought to make such a decision, then IMO the only morally acceptable thing is to keep them alive - just as, if you believe the death penalty is appropriate for a particular crime (rape, say), then it's still not acceptable to execute unless there is proof beyond reasonable doubt that the accused actually did it...

Also IMO there isn't a fundamental difference between killing someone by withdrawal of nutrition, etc (as has been quite correctly pointed out is already routinely done, just not talked about) or by "actively" killing - except that the former could, at an extreme stretch, be sort-of-semi-justified by "lack of resources" arguments, whereas the latter never could...

The "lack of resources" argument is, to me, a bit of a red herring anyway - you could equally well say that, say, gender reassignment operations were not "life-saving" as such, and thus resources should not be spent on them but on more "urgent" operations (which argument is actually used to force transsexuals in the UK to pay (in part) for their own operations even on the NHS, which i'm sure no one here would regard as defensible)... likewise abortion on demand, or anything else...

And i'm not sure why you can dismiss "slippery slope" arguments - if doctors (as opposed to the individual living it) are given the power to decide whether a life is worth saving or not, then what if they decide, say, that a life paralysed isn't worth saving, and don't bother trying to save the lives of people who have had spinal cord injuries? Or, say, that a life with under a certain IQ (itself a highly dodgy concept) isn't worth living, and don't bother giving essential medical treatment to mentally disabled people (which category could include myself)? Many hospitals already deny heart surgery to children because they have Down's syndrome. I personally know people who have recovered from prognoses considered "terminal". These are very real concerns for many disabled people - who do see a slippery slope, and themselves (ourselves) in very real danger of ending up at the bottom of it...

(the original thread is here... there was an interesting, but IMO incomplete, debate there, which IIRC i didn't really feel up to returning to at the time... i also posted a link to a discussion of the same topic on the BBC Ouch message board)

I think i made my views reasonably clear there. If they have changed at all since, it's probably slightly - but only slightly - in the "Not Dead Yet" direction - if only because i'm even less comfortable with the idea of asking a PA to assist with suicide than i was then. I still agree with the MindFreedom/Antipsychiatry Coalition position on suicide in general, for all the reasons outlined above (and that, in fact, was pretty much the origin of my whole libertarian belief system which led me to the philosophy of the Independent Living Movement in the first place), but i do have to stand with Not Dead Yet in their argument that very many of the lives considered "not worth living" are only so because of social conditions - the most obvious being life in institutions - and that those people would not want to commit suicide if the proper social support to enable them to live lives of independence, dignity and equality were available.

There is a point here relating to depression and how it gets conceptualised - the prevailing view in mainstream/"establishment" discourse seems to be that depression is "endogenous", or a result of chemical abnormalities within the individual brain, whereas a social model or "personal is political" viewpoint would argue that it is more likely to be caused by oppressive and unacceptable social conditions, whether at a home/family/immediate surroundings level or at a wider systemic level. However, like with most iterations of the "nature vs. nurture" debate, I don't find the position held by some antipsychiatrists that all depression is social in origin useful - there is solid evidence that, in some cases, depression does have a clearly biological origin, and in some of those cases, it is treatable by biochemical means (an obvious example being gender dysphoria and the extremely high success rate of treating it with hormones and surgery, as opposed to the extremely low success rate of "treating" it with "normalisation" therapy - in fact, most attempts at the latter end in suicide).

If most depression is (and I do think most depression is) caused primarily by social conditions, then the obvious, non-medical solution to the problem is to change those social conditions (which, obviously, is easier said than done). However, if someone has truly endogenous depression (that is, in social model terms, their depression is not a result of disability, but is in fact their impairment), to the extent of unrelentingly feeling suicidal, and no drug treatment is successful in having a positive effect on it (as does happen in many cases), then is forcible suicide prevention - that is, denying death to someone who truly cannot find anything positive in life - really justifiable? If someone I loved was in that position, while of course I would tell them how much I valued them and wanted them to stay alive, ultimately it would be utterly selfish, and even arguably a form of torture, to keep them alive when life was intolerable for them - and so, ultimately, I think I would, albeit deeply regretfully, if necessary help them to die.

However, this is actually a slight digression (and something that really deserves its own full post) - the purpose of this post was really to say that euthanasia is not the same thing as assisted suicide, and that, while some of the same issues tend to be present in individual cases of both, conflating them with one another is inaccurate, confusing and helps no one - indeed, it potentially endangers a lot of people, especially when the kind of arguments most properly used in regard to assisted suicide get used in clear cases of "mercy killing" (aka murder) - the Latimer case, for example - in which there is no evidence whatsoever of suicidal feelings on the part of the victim. It shows, to me, a disturbing lack of understanding of the most fundamental aspects of the ethics of life and death on the part of writers and journalists to conflate such concepts with each other...

* "recent" here now meaning a couple of months ago, as this post was written in early April and is only being posted now because of having been offline for so long...

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...)