Monday, September 03, 2007

Just like any other illness.

This is something I've been meaning to write about for a while and loosely fits in with Pity Protest Blogswarm in so far as it is about the Charity Model of Disability and its failings.

I wrote a little piece on the Ouch! Blog today about Awareness Campaigns and their limitations. One example where such information campaigns are particularly unsuccessful is in the area of mental health. A month or so ago, they announced a new one, a £16m drive to tackle the stigma of mental ill health. I read the very first sentence of the article about this funding
"In the biggest attempt yet to change the public perception of conditions such as depression and schizophrenia, three major charities are to run a TV campaign showing that many conditions thought of as incurable are treatable."
and my heart sank. These anti-stigma campaigns keep failing because they try to work around perceptions of disability that exist in this culture instead of challenging them head-on. Instead of arguing that impairment is a morally neutral aspect of the human condition, that medical facts belong to the individual and the medical staff working with them, and that society needs to work on accepting and respecting all of its members regardless of their health, they cry "Look! We can squeeze ourselves into this mold as well!"

And it fails. Why? Because no chronic illness sits comfortably with the dominant models of disability and mental illness sits least comfortably of all. The problem?


When the respect and acceptance of a society is not on offer, sympathy is the only thing disabled people can hope for. And sympathy makes demands; the recipient must prove themselves innocent in their peril and worthy of our pity.

For a long time, mental ill health has come up against two obstacles in this regard. The first is the perception that much mental ill health is merely an absence of moral fibre; these people fail to cope, they are weak and cowardly and thus not innocent or worthy victims. The second is the perception that the other group of people with mental ill health are so very much out of control that they are a threat. We struggle to sympathise with something we fear.

Anti-stigma campaigns have generally approached this problem by proposing a biogenetic or shit happens model of mental ill health. People just get sick, it's biological, genetic, it's just one of those things. A person is walking down the street one day and kerplunk, they develop major depression. It is, they say, just like any other illness.

This hasn't been entirely ineffective with the label of Bipolar Disorder or Manic Depression, as we have established that there is a significant genetic component at workd. At the same time, Manic Depression has long been associated with the stereotype of artistic genius, which also helps ( not that people with BD/MD don't still face enormous stigma, nor are such stereotypes without their own problems).

Unfortunately, there are very many mental health conditions which we know have been triggered by life events such as stress and trauma and many more where life events are likely to have played a major role (if that can't be said for all mental illness). And that's much more difficult as far as this issue of sympathy is concerned because you failed to cope when someone else might have coped.

In reality, this is nonsense. There are always reasons why people get sick, but these reasons are always complicated and often elusive. A person's neurological and psychological response to trauma is no less complex than an immunological response to a viral infection - perhaps more so. There is never one simple answer as to why an event effects a person in the way it does, that stuff happens far below a conscious level and nobody ever chooses to get sick, nor do they choose not to get better. In all these regards, it is just like any other illness, but not because it is in any way simple.

At the same time, anti-stigma campaigns attempt to deal with the second problem, the fear of "psychos", by pushing forward the idea, as alluded to in the quote above, that these problems are treatable. In reality, the people who suffer the most from the stigma of mental ill health are those with chronic and severe conditions which can be managed but are basically incurable. And whilst psychiatric medicine has progressed a great deal in recent years, some treatments still present users with very difficult decisions; decisions made more difficult by the prevailing idea that if it is treatable it should be treated.

However, the central mistake made by anti-stigma campaigns is the idea that any of the facts of mental ill health are relevant. At least none of this ought to be relevant to society's response to a person with mental ill health or any other impairment. Impairment is a morally neutral fact, like sex or skin-colour; it just is. People do not need to meet any kind of criteria in order to qualify for our sympathy; everybody qualifies for our respect by virtue of having blood in their veins. Whereas if you have custard in your veins, I won't give you the time of day.

Being the longest blog post I've written in several weeks, I've no idea if any of this makes sense.


Penny L. Richards said...

It makes terrific sense to me. This is a great contribution to the day.

imfunnytoo said...

Go, Goldfish, go...

Lady Bracknell said...

Very nicely put, Ms Goldfish.

cusp said...

You're very eloquent, Goldfish. In my oft-muddled state I appreciate the fact that you can put into words thoughts that occur to me but refuse to be expressed coherently.

Ahistoricality said...

Very well put. It was pointed out to me by one of my commenters that my own post tended to glide over mental illness, etc., and this really covers the ground I missed.

Kara said...

Makes total sense actually and I really like the connection of this topic with mental illness....even "among us" you hear pity for people with disabilities/illness that are not physical....same thing no matter where it comes from-pity and it doesn't help anyone! Thanks SO much for participating:-) You really helped make it a success!

S. said...

Thank you!

Scott Rains said...

Once again one of your posts reminds me that I don't get over to your site nearly often enough!

Elizabeth McClung said...

I agree that such an ideal world is worth working for. However, I think that a) people will always want in some way to be understood - which is why literature for example exists and b) often an effective way to move people who are not acting in an ideal way is to give them the information they need to reevaluate their own understanding.

Groups like PFLAG and gay rights organizations work at a ground level to educate people away from stereotype by illustrating with real examples along with information. They try to get the range of presentation in media (like there are LGBT people of colour and not all lesbians are evil and or planning to murder someone).

If all that is desired is unknowing acceptance, then the fact that virtually all manic depressives/bipolar are presented in media as loose cannon/dangerous shouldn't matter because in truth there ARE some bipolar people acting like loose cannons. That might not represent the majority of bipolar, uni-depressive, OCD or other disabilities (I sure there is SOMEONE like TV's Monk, who is held up for laughter, and some sort of acceptance, I guess, but not much education).

That's why I think groups which advocate education work well while we wait for the idea world. And the best which I hope for is not sympathy, but understanding (by whatever context that might be possible for that person - I am thinking of the spoons analogy which is used as a disability education tool).

The Goldfish said...

Thanks everyone,

I'm glad it made some sense. :-)

Elizabeth - I agree with everything you say, but my point about this isn't that we shouldn't attempt to address stigma, merely that we cannot address stigma by kowtowing to existing dominant models of disability.

If they did work, if mental ill health was merely promoted to the status of physical ill health, then that would be better than it is just now but unsatisfactory. Unfortunately, this method doesn't work at all. There's evidence that things are actually getting worse.

The kind of methods you suggest are eminently sensible; it's the method I'm criticising, not the intention.

Elizabeth McClung said...

I have read and re-read your comment and I don't understand it, particularly the phrase "we cannot address stigma by kowtowing to existing dominant models of disability"

Which models? Social, Individual, societal, medical, cultural, all?

One of my major problems, for example, is to try to stop the "anti-conglomerate" attitude in North America which pushes an idea that pills like Prozac are a conspiracy....while every 13 minutes in the US someone commits suicide - most of which are preventable with societal and medical support.

How do I do that and walk away from a social and medical model? I don't consider depression which leads to suicide to be "morally neutral", I think it is a moral black mark on a society. Is a condition or person who is literally crying for help "morally neutral?"

I am not a big fan of the UK's anti-stigma campaign becuase like the anti-bullying campaign is seems to have nothing to address or attack the societal core values. If the government spent a few hundred million setting up mental health ER's, that would likely send a message that those illnesses are equal to other dramatic and life threatening illnesses. But that doesn't mean I don't think there need to be anti-stigma campaigns - just ones which actually fulfill their objectives.

If I seem a bit frustrated, that is not to do with this post but rather outside concerns which I have just been informed of - so I am not sure, in this state, if I am questioning reasonably or with a sledge hammer.

Ol Nobby said...

Hmm maybe its a starnge connection but Ic ame across this on a discussion group site today and it seems to fit in here

Seems from this persons experience questioning those in authority in New Zealand is not a good idea, shades of the Blue Caps of the Gulag

Psychotic Symptoms

Mr. xxxx describes a belief that various individuals and organisations have deliberately lost health information, even though he is not sure why they would do so.

He also believes he has been harassed by the police from time to time, has been harassed by Insurocorp, that they have investigated him for fraud and as part of this the investigators have harassed him by following him about and speaking to him.

His wife indicated that she had also heard these people, so it seems that these are not auditory hallucinations.
They are not occurring at present as far as I can tell and there did not seem to be any frank delusions of reference or delusions of persecution present

The Goldfish said...

Elizabeth - This is a little tricky. First off, we may be at cross-purposes with language. I'm talking about models of disability, not models of mental ill health, which are two very different areas of discussion. In particularly, I'm challenging the dominant Charity Model of disability; disabled people are broken and it is only out of pity and kindness that they might be helped and accommodated.

The Social Model of Disability, the reality of the situation as I see it, is one in which the very thing which makes us disabled - the only thing you and I have in common with someone with Autism, a deaf person or someone with Spina Bifada, for example - is the social response to us as people with impairments. In the same way queerness is about a social status, as opposed to any specific sexual orientation, if that makes sense?

Anyway, impairment is morally neutral, but our social responses to it are not. If a suicide - or any death - can be prevented through social and medical intervention, then it should. The fact a person's life is endangered by depression makes that life no less worthy than any other. But dominant models of disability say it does; this person's injuries, on being omitted to hospital, are self-inflicted, so why should anyone care?

Actually, you know, I think I need to do a proper blog post about this to answer these points - and Nobby's too. Hmm.

Elizabeth McClung said...

Yes, this I can understand - the idea of the umbrella of strength. For instance one of the issues in LGBT lobbying and organizations is that T is gender identity and LGB is sexual orientation - but since most people in the public don't know the difference and because T (And B) are so small to not make a difference by themselves it is better to work toward education and equality for all - which means legal protection like the ADA.

So I think while we are drawn together in disability through shared social experience I also think we are drawn together in choosing to be part of a disability network, moving society toward the ability to differentiate, accomadate and treat us equally as individuals with individual conditions.

I kinda thought I agreed with you - do you think I agreed with you?

mcewen said...

Makes sense to me! There again I probably have custard in my veins - love it.

marmiteboy said...

"Impairment is an entirely neutral fact like sex or skin colour"

Brilliant. I'm nicking that if you don't mind.

Ol Nobby said...

Well the whole thing is posted here, from experience we have an organisation which will do anything to show those injured are always in the wrong and they will go to extrordinary lngths to protect their position and paint themselves as the good guys.

So if you consider a post you may need to read the full story first, and considr that such reports are always designed and written to try and win favour of the strongest party, if you like

Andrea Shettle, MSW said...

Hi -- I wanted to make sure you knew about the latest that is happening with Jerry and his, yes, humanitarian award:

Jerry Lewis, the man who runs the annual Telethon to raise money for people with muscular dystrophy in the US is about to receive a humanitarian award. Many people in the disability community is protesting this award because they feel that Jerry perpetuates and entrenches negative, harmful stereotypes toward people with disabilities. More about the petition campaign at:

There is also a Facebook group at