R.I.P. Adrienne Asch – Bioethicist, Philosopher and Disability Ethics Pioneer

Today, I'm reached by the sad news that Adrienne Asch – a pivotal figure in bioethics, particularly known for her important contributions to the understanding of disability-based perspectives on bioethics, not least  regarding prenatal and other sorts of such reproductive genetic testing this world doesn't seem to ever get enough of – passed away this morning after having suffered bad cancer for some time.

Confirmation of this last news is here, and the death notice has been traveling around Twitter and Facebook today, e.g., via my trusted Canadian colleague Udo Schuklenk, originating apparently from the account of the US National Federation of the Blind (where Adrienne was a prominent spokesperson):

Addendum 2013-11-20: the day after, Yeshiva University has now officially posted an in memoriam.

The NFB also provides a link to this recent address that Adrienne gave at their convention this summer. It tells the tale of her way into bioethics and philosophy from human rights activist work, explains why the disability perspective is so important to bioethics, and why bioethics is so important to the disability movement, and ends by some pretty hard to chew food for thought for bioethicists, disabled people as well as anyone. Information about her writings and other accomplishments can be sampled via her webpage at Yeshiva University, where she held three parallel chaired professorships and one directorship. But don't take my word on her qualities as a scholar for it, here's a video piece where you can watch her in action talking on her special topic and judge for yourself:

My own contact with Adrienne came via her work on the disability based criticism of prenatal (PNT) and eventually preimplantation genetic testing (PGD), which still holds up as the most eloquently put, stringently made and thought-through devised version of that important critique, which she nevertheless continued to develop (she had a couple of pieces in the American Journal of Bioethics last year). I had myself been barely sniffing some of what Adrienne herself had the full grip on in my work on PNT and PGD in the 1990's, but when I came to writing my first encyclopedia piece om PGD a few years later, I was lucky and awed to discover it all so much better told by Adrienne and since then, her work has been my main reference on that topic whenever I need to provide one. Many years later, as part of a European Commission sponsored project on access to higher education for disabled people and charged with arranging a workshop on relevant disability-related research, Adrienne's name was the first one to come to my mind as speaker – and to my astonishment and joy she said yes. This was not so long time back, so this is how I remember her, as in the picture above: working! Because that she did and contributed everything I could have ever wished for, including cracking a joke when it was best needed. There were plans made then that we never got around to finishing (or even initiating), but she nevertheless honoured me by referencing my PNT work, and we shared space in this book, which came about thanks to Daniela Cutas, who worked with me in this project and was introduced to Adrienne at that same workshop.

Also, used to getting around as a blind person in New York City, when we asked before she came to that workshop if she needed any special assistance, she declined, albeit finding out that this thing with the cobblestones and the trams of Gothenburg and all made it slightly less manageable than maybe she was used to or had expected. Did she intentionally show anything of that? Never! I sensed then the divide of experience between us that probably made an ocean of difference in our angle of approach into our respective work – as much as we reached conclusions of close proximity. The divide between one who in virtue of physiological constitution has always enjoyed the default upper societal hand and the one who has always encountered a basic tweaking the other way around. In any case, this is my own personal connection to and remembrance of Adrienne; hardworking, insightful, generous, profound, funny and proud.

Catholic Aid getting Its Priorities Straight: Typhoones, Rosaries and the Message of Love

Connecting to my former post re. certain gaps in human moral psychology made visible by the global aid response to the typhoon Hayian (also known as Yolanda), it is not exactly uplifting to be forced to share this evidence of morally adequate compassion being most seriously lacking where one would perhaps expect it the most: from aid organisations working from a christian ethical basis, with the message of love at the core of its mission – or not?


Have a look at this admirable crock of /%&€ of an initiative of a Catholic aid organization at providing the homeless, starving and plagued by social unrest and disease of Manilla with what they allegedly really need the most: rosaries to pray effectively (not made clear for what of all those thing said organization has chosen not to provide instead).

It is not revealed exactly how many people that "Rosaries for Life" or the Catholic Bishops’ Conference of the Philippines view it fit to leave dying or suffering serious injury of lack of resources that could have been provided instead of these no doubt cute little gadgets for securing the obviously very important "spiritual needs" hereby attended to. Christian ethics in practice, indeed!

Reminds me of this early post of this blog, by the way: Message of Love: If Only You Could Eat It.

South Sweden Police's Registry of Roma is Illegal on Multiple Counts – and More Criticism May Well Be Coming!

So a while back I posted an admittedly rather annoyed and highly sarcastic piece regarding the revelations of a registry of more than 4 500 people, mostly of roma origin or related to roma people, some of them since long dead and over 1 000 of them small children, and the feeble and completely confused attempts of responsible police officials to deny any wrongdoing, responsibility or simply sweep the whole thing under the carpet. After that it has been revealed that the registry has contained a large number of people with no suspiscion of or  connection whatsoever to criminal activities and completely respectable lives, jobs social situation etc. – they just "happen" to be roma or having roma relations.

 As I reported about then, a criminal investigation of possible illegal actions in the setup, management and use of the registry was immediately opened by a criminal prosecuter and two police officers have since then been notified of suspiscions of crimes in this respect so far. Parallel investigations were opened by the the Commission on Security and Integrity Protection (SIN) and the Swedish Discrimination Ombudsman (DO). The former authority "supervises the use by crime-fighting agencies of secret surveillance and qualified assumed identities and associated activities" and today delivered its report on what has become known as the "roma registry". Reports in the press can be found (1st one in English) here, here, here, here, here, here, here.

The verdict is that the registry is severly misconceived from the outset, handled sloppily and with lack of discipline and illegal on multiple counts. This, it should be noted, is an administrative legal verdict and does not – however severe its administrative legal implications – by itself imply criminal wrongdoing of any person, but it's hardly good news for the already notified officers mentioned or others formally responsible or users of the registry in South or other parts of Sweden that may be under the criminal prosecuter's scrutiny. What the outcome of this criminal legal process will be remains to be seen.

Likewise, the SIN verdict does not settle the issue of whether or not the setup and running and use of the "roma registry" amounts to illegal discrimination (on ethnic grounds). This is the topic of the DO investigation, which is still ongoing. SIN does note in its report that, apparently, ethnicity has not been the only ground of inclusion of people into the registry – however, this does not settle the illegal discrimination issue, since it seems that people have been included (almost) only if they have either roma origins or relations to people of such origins. That is, while more or less well-founded suspiscion of crime or feared future criminal activity has indeed been a reason for inclusion, a great many people falling into that category have not been included and, seemingly, this is due primarily to their lack of roma origins or connections. It remains to be seen how the DO will assess this delicate situation.