The people we're OK with killing

There's a powerful piece of writing by Tommy Christopher on Mediate about a major US network excusing the murder of a disabled child.

People with Autism Spectrum Disorders (ASDs) are routinely slandered in the news media, even by parents of autistic children, but nothing comes remotely close to a CBS News report that sickly excuses the murder of 14 year-old Alex Spourdalakis by his mother and an accomplice. The report has spurred a petition to have CBS News take it down, but they really need to air a complete retraction, and discipline everyone involved in this travesty.

On Friday’s CBS This Morning, reporter Sharyl Attkisson delivered a report that was fatally flawed on several levels, but I hesitate to even mention the reporting itself, because even if everything in the report was 100% above-board and true, it would not support the sick conclusion that permeates it: that Alex Spourdalakis’ mother had no choice but to murder him. This sounds like an exaggeration, surely, but it is not. This was the explicit message of CBS News’ report.

The closest anyone in this report comes to denouncing Alex’s murder is anchor Gayle King, who introduces the piece by saying “The case is extreme, but it shines a light on the struggles of hundreds of thousands of families coping with autism.”

Why can so many journalists involved in compiling and presenting this report be so blind? Christopher quotes Ari Ne’eman, President of the Autistic Self Advocacy Network and the first presidential appointee with autism:

"An ideology, a dangerous ideology that preaches that people are better off dead than disabled, is what led to Alex’s murder."

This is hardly just an American problem. Hate crime against the disabled is going up in the UK, aided by, yes, them again, the media. In the UK's case it's a drip-drip of stories about fake benefit claimants, allegedly sourced back to the government.

In another powerful piece for ABC Australia Stella Young details harrowing case after harrowing case of:

Disabled people who have died at the hands of family members, and so often the media uses terms like 'compassionate homicide' or 'mercy killing' to describe the actions. But the killing of a disabled person is not 'compassionate'. It is not 'euthanasia'. It is murder.

In one case a daughter was starved to death.

Angela Puhle pleaded guilty to a lesser charge of manslaughter and was sentenced to a three-year good behaviour bond. Further, the judge described Puhle as "a loving and devoted mother". He said:

"You did all you could over the years to ensure she could live as happy a life as possible for a person with severe disabilities that she suffered from."

She will not serve time in prison.

Consider for a moment the fact that in South Australia where Kyla Puhle died of starvation, the offense of ill treatment of an animal - whether or not that ill treatment results in death - carries a maximum penalty of $50,000 or four years in prison (PDF). Earlier this year Adelaide man Hally French pleaded guilty to bashing a dog with a pole and suspending it from a clothes line. He received a three month prison sentence. The dog subsequently made a full recovery.

Like Christopher, Young makes this point:

While the disability support system may indeed be woefully inadequate to support these parents, it cannot possibly be used to justify murder.

Of course not, but I do wonder if there is not a collective responsibility. A community, neighbours, relatives, who let down those disabled people. Professionals who, like is often reported when a child is neglected and murdered, who saw warning signs but failed to take action?

If we can understand racism or homophobia as being something pervasive, as not limited to 'bad' and 'good' individuals, as not a personalised 'sin', then surely disabalism is also a collective and pervasive issue? That disabalism killed these people?

If these parents were killing their kids because they're gay then we'd understand that the parents are personally responsible but also that the community let them get away with it and allowed that level of hate to fester?

Hugh Ryan wrote a powerful piece last month in the New York Times reviewing a exhibition about the first five years of HIV/Aids in New York. He chronicles how the exhibition whitewashes those institutions, like, but far from limited to, the Catholic Church, who were perfectly happy to watch gays die.

Bad history has consequences. I’m not afraid we will forget AIDS; I am afraid we will remember it and it will mean nothing. If we cannot face the root issue — that we let people die because we did not like them — AIDS will become a blip on our moral radar, and this cycle will repeat every time we connect an unpopular group with something that scares us.

I survived that time and I can well recall: people wanted people like me dead, that's just the truth. It wasn't just individuals, it was something far more rotten.

If murder and ill treatment of the disabled is getting worse that's not about a few bad apples, it's about our collective decision to allow it to happen.

A respectful disagreement with Ben Goldacre (and Jack Pickard)

Image via Wikipedia

A post by my friend Jack Pickard calling alternative therapies mere placebos, echoing Ben Goldacre's arguments, has prompted me to write about a painful part of my past.

I should say first that I admire Goldacre, author of Bad Science, for his work on nailing down tricksters who sell stuff which doesn't do anything and has no science to back it up. In particular his posts about the media-driven hysteria around MMR.

Back in the 90s I worked with a therapist friend on testing whether any alternative therapies would help relieve AIDS symptoms. I could see that some of them did help and this makes sense as much conventional medicine is derived from nature: this is why drug companies send people out to indigenous peoples to find new therapies from amongst their traditional medicines, a process known as bioprospecting.

My generation of gay men, until the first effective medicine started to appear in the mid 90s, faced multiple funerals and would look at anything which might help.

When the efficacious medicines started to appear I witnessed something close to the sort of desperation I could imagine occurring in an Ethiopian refuge camp as the emaciated fight for the last scraps of food and water.

Two things in particular stick in my memory and my throat.

I had friends who literally were making choices between medicine, rent and food - they were poor. They did not have boyfriends or family to support them, they were isolated. Some were literally growing their own food. The largely middle-class and highly educated people living with HIV/AIDS who ran the decision making bodies and sat on government advisory panels only cared about drug trials, they refused to see that before those breakthroughs they were waiting for others would die from such situations and the stress they engendered.

When the drug trials really took a turn towards what would eventually become the therapies which keep people alive today the drug companies decided who lived and who died. Amongst those who couldn't get on them were women, 'because they might become pregnant'. It didn't matter if they were lesbian, as a friend of mine was, to protect themselves and maybe for scientific reasons, women had to be turned down.

The biggest problem myself and my friend faced in trying to produce science on alternative therapy was the impossibility of getting funding or any support to test them.

The system for 'proving' the efficacy of a substance is radically bent against the ability of alternative therapies to do that as it is so expensive, even simple blood tests - we had to do this by cheating or with the help of a few sympathetic doctors.

Unfortunately the experiment came to an end with the premature death of my friend. But I know others around the world at this time who were trying similar experiments and - much as the use of marijuana has been shown to be effective against glaucoma - despite all the odds there is scientific proof that some alternative therapies do work to relieve AIDS symptoms.

So it is a plain fact that alternative therapies are not all placebos.

Health sites and memories

A friend pinged with with info about a patient community website he'd just found; Patients Like Me.

He'd found it very useful to exchange experiences and information with those with his condition. I had a look around the site and found thriving communities, including one for HIV/AIDS.

This took me right back to two decades ago (gulp) when the first internet responses to AIDS appeared. In the early 90s I edited a magazine which needed the latest research information. This, literally, came off the boat, so was several months old. So when I encountered the net it was with astonishment that all this info was there and brand new!

The info was pure text and basically a fairly unusable, certainly unsearchable, database interface. But it was astonishing.

What I was looking at was the AIDS Education Global Information System (AEGiS), which is now the world's largest Database of AIDS information. (The only resource larger is the U.S. National Library of Medicine, but it only offers some of its information on a website).

Since 1992, AEGiS has sought out scientific abstracts from local, regional and international AIDS conferences, related news, reports, and journal articles and compiled them a fully-indexed, cross-referenced and keywords searchable database.

The site is deliberately light on visuals that would make it difficult to access for those with slower computers.

It was originally started as a small electronic bulletin board system (BBS) by Jamie Jemison in 1986. Sister Mary Elizabeth Clark, a transsexual pioneer, and US Navy/US Army veteran took it over in 1990, inspired by meeting an isolated young man with AIDS in rural Missouri. Under her direction and tireless effort, the database grew and grew.

She worked 18-hour days from the living room of the mobile home she shared with her aging parents. It sits just across San Juan Creek near LA from the new 1,700-square-foot office, which Clark's 93-year-old father, Ed, happened upon and recommended for AEGiS just months before he died. They moved into that office only a few years ago.

AEGiS is nowadays funded by the US National Library of Medicine, Elton John AIDS Foundation, Boehringer Ingelheim, Bristol-Myers Squibb, John M Lloyd Foundation, Roche / Trimeris, and the Bridgestone/Firestone Trust.

Sister Clark is one of my heroes, a real web pioneer and a true inspiration.

She's received many awards including the 'Award of Courage' from the American Foundation for AIDS Research, and the Human Rights Award from the International Assn. of Physicians in AIDS Care. AEGiS was nominated for U.N. honors in 1999, 2001 and 2003.

Another hero and inspiration is epidemiologist Elizabeth Pisani.

HIV/AIDS work is very political, including in affected communities, and that slants priorities and funding.

A good example would be the lack of promotion for many years of a 'negative' status for gay men - it was seen as somehow undermining HIV+ gay men. I suffered a lot of grief for that view when I worked in the area.

Pisani talks a lot of sense on these sorts of topics:

The problem, Pisani says, is that 80% of the Pepfar (Bush's AIDS initiative) budget goes on treatment. "Pepfar says great, we've got 1.8 million people in treatment. And next year it will be another 1.8 million! That will mean 3.6 million people. It's exponential - and that's the biggest question mark over the entire approach to Africa. The more treatment you have, the more infection you get."

ARVs [antiretroviral drugs] reduce people's viral load, she agrees, making them less likely to infect someone else - as long as they don't miss a single dose. "But it also keeps them alive longer, and healthy enough to want to have sex. You only have to look at the experience of the UK or US gay communities where we've had more or less universal access to ARVs for at least eight or nine years, and the number of new infections are rising. More people are living longer with HIV, and there is what we call behavioural disinhibition: 'Fuck the condoms, I don't need them any more, because if he's positive he'll be on drugs, so he probably won't infect me. And if I do get infected, it would be annoying, but not the end of the world.'

"But having Aids is not a picnic. Yes, it's great that all this stuff on treatment is happening. But it becomes all the more urgent to have effective prevention. And that's not happening."

"Is not a picnic" is putting it mildly, you can expect to live around 25 years on ARVs. It makes me despair that so many young gay men are condemning themselves to shorter lives without a single clue that this is what they're doing by ignoring the condoms. Plus the government is cutting back on preventions spend.

Pisani did a few interviews in the UK last month for her brilliant book The Wisdom of Whores: Bureaucrats, Brothels, and the Business of AIDS.

On News24's HardTalk, professional dick Stephen Sackur spent a lot of time quizzing her about 'mafia connections'.

• You can watch the interview here (23 minutes, RealVideo)

By contrast Andrew Marr, was more interested and asked great questions.

Her blog is also called The Wisdom of Whores.