Wednesday, April 30, 2014

Blogging Against Disablism Day 2014 - Against "Awareness"

Blogging Against Disablism Day, May 1st 2014
Do go read other contributions to Blogging Against Disablism Day 2014
Full image description and attribution at the bottom of the post.

There is a widespread belief in our culture that raising Awareness of illness and impairments benefits disabled people. Even if it were possible to educate the general public about every medical condition there is, this doesn't do anything to address the attitudes which cause inequality. In fact, I would argue that Awareness thoroughly supports those attitudes; disabled people are to be pitied, and if they can't be pitied, they must be hated.

Awareness is about Money.

Awareness Campaigns are primarily money-raising exercises. They raise money for charities and they provide very cheap human interest stories to fill magazines, newspapers and TV shows. Some charities are extremely worthwhile causes, but others are not - the mere association between an organisation and a group of people who need help and support doesn't mean that that help and support is forthcoming.

Meanwhile, as I've been looking around for graphics to illustrate this post, I have learned that one can buy a great number of Awareness t-shirts and accessories from companies who don't even feign affiliation to a charity. So there's money to be made all round.

Awareness reinforces a strict narrative about disability. 

It's tremendously important that disabled people tell our stories - all kinds of stories - but there are only three stories told about disabled people in our culture; triumph, tragedy or villainry. Awareness leaves the villains alone - nobody gives their spare change to help Blofeld walk again.

Instead, Awareness concentrates on the narrative which makes up The Tragedy Model of Disability:

"Keep Calm and Fight Depression"
1. Disaster strikes an innocent.
2. Our hero bravely battles against impairment.
3. The bittersweet resolution, which may be:
(a) Our hero succeeds in becoming at least slightly less disabled.
(b) Death and thus, the end of suffering.

Almost every news story and most fictional stories involving disabled characters follows this pattern. Awareness Campaigns' favourite subjects start out as brave soldiers, promising athletes or straight-A students - all the better if they are about to get married or start their dream job when they become disabled. Obviously, they have to become disabled in a way where they are blameless; for reasons that remain unclear, extreme sports injuries are fine but sexually-transmitted diseases are not.

Then they have to suffer; multiple tests, multiple surgeries, multiple experiments in alternative therapy, moments of despair (but preferably nothing as serious as a suicide attempt). And at the end, even though most subjects will still be disabled, it has to be played that they have overcome their impairment in some way. They may have defied all expectations to taking up macrame! Or they have a relationships! Or even a job!

"Losing is not an option"
When the disabled people are children, a non-disabled parent will often be cast as the hero in their place. Even last week, when a mother murdered her three disabled children in New Malden, near London, newspaper reports told this story, just hours after those children were found dead: We are reassured that the parents didn't know they carried the genes which would cause some of their children to have Spinal Muscular Atrophy until the mother was pregnant with the younger twins (Disaster strikes an innocent); the devoted mother (no quote marks) slaved away looking after her burdensome children with little outside help (Our hero battles against impairment). The children were "likely to spend their short lives in wheelchairs" but now they're dead, which is sad but not the worst thing in the world.

Quite unlike when non-disabled children suffer violent death at the hands of their caregiver - that is the worst thing in the world.

Awareness promotes a dynamic between non-disabled and disabled people which renders equality inconceivable. 

I've written before about the way that doing anything for disabled people, including normal things that family members, friends and colleagues do for one another all the time, can be framed as care and take on a special charitable status. Give your non-disabled friend a lift? That's a favour. Give your disabled friend a lift? That's care, have a medal, bask in the warm-fuzzy of your own philanthropy.

"I wear a ribbon for my hero"
Thus all interactions with disabled people become tainted with this idea of charity. Employers imagine that employing disabled people would be an act of generosity and compassion, rather than shrewd recruitment. Accessibility is not a matter of fairness, but kindness, and can this organisation afford to be kind? Governments are able to frame disability benefits and social service support as a matter of charity, discussing deserving and undeserving cases, as opposed to straight-forward eligibility.

This is a major factor in the abuse of disabled people, with disabled women twice as likely and disabled children three times as likely to experience domestic abuse than their non-disabled peers. Stand next to a disabled person and you'll be assumed to be their carer. Live with one and you'll be assumed to be a saint (see above, re the New Malden murders).

It's a common complaint from folk with chronic illness that they'll see their friends on social media sharing Awareness material, including aphorisms about the importance of loving and supporting someone with a particular condition, when they haven't made personal contact in months. But this is what happens when all interaction with disabled people is reduced to charity; you're not enjoying my company, you're giving your time to me. And if there's no praise attached, what's the point of that?

A little knowledge is a dangerous thing. 

Once I'd received my diagnosis, friends and family would take an interest in news stories about the Dreaded Lurgy. Most of these stories were human interest stories of the Awareness variety; stories about someone with the Dreaded Lurgy. A Day In My Awful Life or My Life-Plan Down The Pan - this sort of thing. I did meet one of my best friends through one such story, but hers was told with far more stoicism and grit than the others.

Anyway, these people with my diagnosis were, naturally, a complete mix. In some cases, I didn't even look like those people; the drugs I was on had made me fat, while some featured dangerously underweight women who struggled to keep any food down. Some of them described managing a part-time jobs, while I was rarely awake for a full hour stretch. Others couldn't walk or even talk, while I was relatively ambulant and nattering away just fine.

Thus, my diagnosis was gently questioned by well-meaning friends and family all the damn time. This was only sometimes skepticism about my account of things - usually the hope was that the doctors had missed something and maybe there was a cure for what ailed me.

Awareness places different conditions in competition with each other. 

"I wish I had breast cancer" - Poster for Pancreatic Cancer Action
Kery Harvey wasn’t wrong to wish she had Breast Cancer, a better understood, more operable condition with much better survival rates than the Pancreatic Cancer which would kill her, aged 24. But the advert, designed to raise the profile of the charity (there’s no information that might promote early diagnosis) is explicit about a message that many Awareness Campaigns aim for; this condition is the worst. It causes the most suffering to the loveliest people, in the most tragic of circumstances.

While there is a large degree of solidarity within the disabled community (hierarchy notwithstanding), communities built around a shared diagnosis are not always sympathetic to other disabled people. It is obviously true that some diseases are generally nastier than others, that some diagnoses are better understood than others and so forth. But, with the help of self-interested charities, illness-based communities can often lead themselves to believe that their problems are unique. Awareness promotes this mentality, pitching one condition against another for sympathy, attention, charitable donations and occasionally even government resources; I have seen on-line petitions demanding funding for very specific areas of research.

When the Robot Hugs cartoon Helpful Advice went viral with the caption “If physical illness was treated like mental illness” (not the artist's own words) it appeared in my Twitter stream on a daily basis for over a week. And every time I saw it, I despaired. People with chronic injuries and physical illnesses get advice about trying harder, thinking positive, avoiding essential medication and so forth all the time. Yes, the stigma of mental illness is undoubtedly worse. But pitching one condition, or group of conditions, against another, can cause hurt all round.

"Helpful Advice" by Robot Hugs.
The dramatic messages of Awareness Campaigns often reinforce or create new stigma.

"Who loves someone with autism?"
My guess is many people but few pandas.
The Caffeinated Autistic has a good summary with links to how, in their attempts to raise money and Awareness, Autism Speaks has described autistic people as if autism is a dreadful mask that the real "normal" children are hidden behind. This includes the now famous Youtube video where one of the board members spoke about contemplating the murder/suicide of her daughter and herself.

The insistence that mental illness is just like any other illness, i.e just like a physical illness, has helped to reinforce the idea that mental illness has wholly internal, biological causes and always can and should be cured or managed with drugs.

Attempts to promote the idea that invisible chronic physical illnesses are real, and not in the imagination of sick people, frequently use language which reinforces the false dichotomy between real physical symptoms and conditions, and imaginary mental health symptoms and conditions, further stigmatising mental illness and making it particularly difficult for people with both physical and mental health conditions.

It's your fault! If you're charged with sexual assault!
Breast Cancer is perhaps the best example of Awareness Gone Wild. In an attempt to market themselves as a fun sexy feminine product, Breast Cancer charities and companies wishing to make money out of pink things have made a fortune, but at the expense of women and others with breast cancer, many of whom are not young, thin, pink-loving white women whose main aspiration in treatment is to Save the Tatas. Barbara Ehrenreich's essay on her experiences with breast cancer is a good example of a great deal of excellent critque of the commerical tactics of Breast Cancer Awareness, which even includes a film Pink Ribbons Inc.

There's a Problem With Our Poster-Boy. 

Poor Stephen Fry. It’s not his fault; everything I've ever read or heard him say about mental illness in general or Bipolar Disorder in particular has been cautious and balanced. He has certainly dented the stigma of Bipolar Disorder or Manic Depression as something experienced by axe-wielding maniacs. However, at the same time, the strong association between the illness and Stephen Fry has very much reinforced the belief that:
  • Bipolar Disorder is a condition associated with artistic genius. People with mental illness who are not artistic geniuses are still either layabouts or monsters. You can't be a regular person with average skills and aspirations and happen to have Bipolar.
  • People with mental illness deserve our sympathy and respect because they are capable of massive success. Our cultural landscape wouldn't be the same without Stephen Fry, and that is why we should be cool about mental illness. 
  • Bipolar Disorder manifests itself in occasional dramatic episodes but is otherwise easy to live with. Stephen Fry is an incredibly busy man, who is - as far as the public can tell - never too sick to work. When Fry attempted suicide in 2012, the public didn’t have a clue until he spoke about it the following year, by which point it was a past event; done, dusted and recovered from.
Stephen Fry quote about the one in four people who have a mental illness.
None of this is Fry’s fault - it is an entirely good thing that he gets to have a private life, and that dramatic events like suicide attempts can be talked about in hindsight and not as dramas unraveling on rolling news (also safer for the rest of us).

The fault lies in a media and a culture which generally under-represents and misrepresents people with mental illness. And people with all kinds of illness. And disabled people in general.

There's a Problem with Our Poster-Girls.

Women are more likely to develop chronic illnesses of almost all kinds. Women are also more likely to seek out others with their condition, join or create support groups, get involved with charities and campaigning. Men and others with chronic illness may struggle to find information and support which is not designed exclusively by and for women. However, when it comes to Awareness Campaigns, stories and images are dominated not only by women, but by a certain kind of woman; our culture's ideal victim.

The "Moving Mountains" Calendar sold to raise money
for the MS Society did feature a variety of women.
She's young, white and pretty. She's usually very slim and often blonde. Her impairment is the only barrier to her being a complete hotty. In fact, if she were fictional and non-disabled, she'd be exactly the sort of person who usually gets murdered at the start of a long-running television show.

Weirdly, her ubiquitous presence on any Awareness Day hasn't really changed the perception that young attractive people can't have chronic illness. That's because, in reality, chronic illness is a fairly commonplace misfortune; Awareness is about sensation; our pretty young victim's plight is tragic because it is unusual. Too unusual to say, be the young lad sitting in the seat reserved for disabled people on the bus.

There are too many conditions to ever be Aware of them all and what's the point anyway?

Pancreatic Cancer Awareness
If you see someone wearing purple or a purple ribbon it may be for ADHD, Alzheimer’s, Chiari Malformation, Crohn’s Disease, Cystic Fibrosis, Dyscalculia, Eating Disorders, Epilepsy, Fibromyalgia, Huntingdon’s Disease, Lupus, Macular Degeneration, Migraine, Multi-System Atrophy, Pulminary Hypotension, Rett Syndrome, Ulcerative Colitis and a whole range of different cancers and other conditions which I haven't heard of. And that’s before we get to matters not related to any specific medical condition, like suicide prevention or domestic violence.

"Hope - Support Epilepsy Awareness"
Presumably, you only ask the first time you see someone wearing a purple ribbon. You might not even ask why someone is dressed entirely in purple.

The question is, is there any specific medical condition that people need to know a thing about?  

"I love someone with Cystic Fibrosis"
AIDS Awareness was one Awareness campaign which worked very well. As well as going some way to address a terrible new stigma, it promoted changes in behaviour which helped to prevent a pandemic in Europe (something we often forget was perfectly possible). But HIV/AIDS was a brand new disease.

Fibromyalgia Purple Ribbon Tree
There are symptoms we need to learn about for purposes of prevention and early diagnosis, but most of these symptoms could relate to a number of serious conditions; new pain, mysterious marks on the body or blood where it shouldn't be - I once saw a list of Symptoms You Should Never Ignore include sudden blindness!

But as far as being Aware of conditions for the sake of people who live with them, what does anyone really need to know?

My neighbour is disabled with what I've heard referred to as "One of those conditions." Perhaps Muscular Dystrophy, Multiple Sclerosis or Myalgic Encephalopathy. I speak to my neighbour, but I've never asked, for obvious reasons. Apart from realising that my neighbour has an impairment and therefore is more vulnerable in bad weather or a power cut, could there be anything, any of us need to know about his specific condition?

The idea that having medical information will improve the way disabled people are treated rests entirely on a view of disabled people as charity cases who effectively need to justify their difference with medical information before they will be treated decently. The idea that disabled people will ever be seen, automatically and unquestioningly, as equal to everyone else, becomes inconceivable if people need to know about our private experiences and medical histories in advance.

Image Description and Attribution:

1. A graphic with red background and black writing reading "Keep Calm and Fight Depression". There is a crown at the top of the graphic. By Keep Calm Studio.

2. "Losing is not an option" - white poster design, the word losing in orange with a ribbon for an o. Other lettering in black. Available as a poster to raise awareness of "any orange ribbon disease" from Awareness Gift Boutique at Cafe Pres.

3. "I wear a ribbon for my hero" - black poster with white and blue writing and a large blue ribbon to the left. Available as Pancreatic Cancer Action features a bald young white woman with some raised areas on her scalp. There is a quote "I wish I had breast cancer." in large bold writing, acredited to "Kerry, 24 #kerryswish". Below reads

"Today 23 people will be told they have Pancreatic Cancer. Like Kerry, this is what they face:
  • Only 3% will survive because of late diagnosis.
  • Most will die within 4 to 6 months.
  • It's the UK's 5th biggest cancer killer.
Pancreative cancer has the lowest survival rate of all 22 common cancers. Early diagnosis saves lives."

There's then a link to the webside at the details of the registered charity number.

4."Helpful Advice" by Robot Hugs. A grid of six illustrations entitled "Helpful Advice". The first features a figure in bed, thermometer in mouth and a figure above them saying, "I get that you have food poisoning and all, but you have to at least make an effort."

The second features a figure with a bleeding stump where their hand might have been. Another figure is saying, "You just need to change your frame of mind. Then you'll feel better."

The third features a figure leaning over a toilet, with another figure saying, "Have you tried... you know... not having the flu?"

The forth features a figure injecting their leg, while another figure says, "I don't think it's healthy that you have to take medication every day just to feel normal. Don't you worry that it's changing you from who you really are?"

The fifth features a figure with a bleeding abdominal wound with another figure saying, "It's like you're not even trying."

The sixth and final features a figure in bed with a drip and a heart monitor with another figure saying, "Well lying in bed all day obviously isn't helping you. You need to try something else."

5. Unattributed graphic found on Facebook as part of the "Light Up Blue For Autism" campaign, featuring a soft-toy panda raising its arm and the caption, "Who loves someone with autism?"

6. Design on a drawstring bag available to buy here to raise money for the US Breast Cancer charity Save the Tatas. It has a black background with white writing which reads, "Save a life! Grope Your Wife! Save the Tatas"

7. "Stephen Fry on mental illness" possibly by rationalhub on deviantART - a poster featuring Stephen Fry's smiling face (a handsome middle aged white man with a slightly wonky nose) and the quote,

"One in four people, like me, have a mental health problem. Many more people have a problem with that. I want to speak out, to fight the public stigma and give a clear picture of mental illness most poeple know little about. Once the understanding is there, we can all stand up and not be ashamed of ourselves, then it makes the rest of the population realised we are just like them but with something extra. - Stephen Fry."

8. "Moving Mountains" Calendar Cover by Steve Yates at Derwent Photography. This photograph shows the silhouette of twelve variously-shaped standing women, some holding umbrellas, on a hill. This 2011 fund-raising calendar featured nude photographs of women with MS in the landscape of Cumbria. All the photos can be seen here.

9. "Pancreatic Cancer Awareness" purple ribbon design available as a grosgrain ribbon from Brychan's Lair.

10. "Hope: Support Epilepsy Awareness"  unattributed, found at A Dog 4 Deeds post for Epilepsy Awareness Month, 2011.

11. "I love someone with Cystic Fibrosis" graphic available free from Cool Graphics

12. Fibromyalgia Purple Ribbon Tree is a tree design decorated by loops of purple ribbon. This is available asa fridge magnet from HomewiseShopper at Cafe Press.


Criquaer said...

WoW - I'm sort of stunned. I had really never thought about awareness raising quite like this. You have really thought it through. On a first reading I cannot disagree with anything you say. You are so right, I often feel the need to self-justify my conditions and disabilities, when really folk only need to know what I can and cannot do. Much food for thought here. Thank you. %) x

Spoonydoc said...

Unusually I am going to disagree slightly.
I think there are times when "raising awareness" is useful. But certainly, if you do "raise awareness" then you should have a specific goal in mind.

For instance I will happily "raise awareness" about epilepsy. Why?

1) Safety. Too many TV programs show medical staff inappropriately restraining people having a seizure. I want to raise awareness of proper procedure and what to do if you encounter someone having a tonic clonic seizure. This really could save lives.
2) Less important but still there: counteract the media's portrayal of epilepsy as a condition which is "just" tonic clonic seizures which eventually are completely manageable by medication. People with the other types of seizures can have a very hard time of it. Many get arrested or are not believed or lose their jobs, etc... Better general knowledge among the public would help this.

3) Get rid of some of the myths and stigma that still persists. The only way I see to do that is through education.

This way, the next time you either choose or *have* to tell someone you have epilepsy, you will run a better chance of them understanding you, believing you or knowing what to do if things go wrong.

Penny L. Richards said...

Thank you, now I have a perfect link anytime I'm asked to help with "awareness." (I agree with the above commenter, that there's room for public education, dispelling myths, etc.--but "awareness" can't do that work, given the baggage that word carries.)

Mary said...

Great start to BADD 2014!

The Goldfish said...
This comment has been removed by the author.
The Goldfish said...

Thanks folks,

Spoony - you're absolutely right. I suppose I see an issue like epilepsy as largely a first aid thing, along with knowing that heart attack symptoms could be a pain in the arm or look like a panic attack, rather that the classic chest-clutching version we always see on TV.

Of course, the information you describe is purely medical and about clinical variation rather than the need to put a human face to a particular condition.

However, it is a omission from my post. I've spoken here and before about the fact that people don't usually need to know anyone's diagnosis or medical info, but epilepsy certainly is one example when folks do need to know what's going on.

(As a very young man, my Dad had a colleague who, in the face of stigma worse than today, hadn't told any colleagues he had epilepsy until he had a grand mal seizure at work. This terrified the young men around them, they didn't have a clue what to do, one of them had the idea that the poor chap might swallow his tongue and (according to Dad's possible hyperbole) almost lost a finger trying to prevent it.)

Anonymous said...

Don't ever take that of the net - that's a brilliant article I'm going to share so many times when my social networking timelines are hit by ribbons and pandas.

:-) great job.

Unknown said...

Well said!!

Sam Barnett-Cormack said...

I think it can be worth educating about some conditions, but that's not the same as raising "awareness". I'd like it if more people had a vaguely accurate understanding of both narcolepsy and bipolar disorder, but that can be done without the problems that you so beautifully point out.

I'm now going to spend some time thinking how these arguments apply to disability awareness training, which I've had some issues with for some time, but not really been able to articulate, even inwardly, what the problem is.

Lisa said...

I'm starting to think that a main driver in this awareness business is that people want celebrities to interact with them on Twitter. So they ask "can you RT this? It's for narcissism awareness," and they get the attention they've been craving when the celeb does RT them.

Lisa said...

They're not asking the celeb to RT a link about the diagnosis in question, nothing about a social justice campaign or fundraiser. The tweets always literally just say "can you RT this? It's for xyz awareness."

Anonymous said...

As along time depression sufferer I find it exceedingly annoying that people are depicted in the media as getting better. Perhaps they might, I myself usually do ok from day today, but it can strike again - and hard.
In NZ we also have a sportsperson who "had" depression but got better who advocates exercise as some form of cure all.
Exercise - as if most depressives can do much more than just go on with normal stuff till they get some meds sorted out!

EleriCooks said...

I'm going to throw in with Spoonydoc and Sam here- there are times when letting people know about the existance of a disability is a good thing. For example, becasue of my daughters extremely rare disorder, I needed to educate neighbors about the what and why of things that happened in our home, to avoid misunderstandings. And I talk about their disability publicly because I think it is important for people to know that not all disabilities have something you can visibly point to and say 'disabled'.

Supporting & promoting things like Rare Diseases Day, or specific charities can help get funding to researchers & families, and that is important. But that takes active outreach and participation, not just sporting a ribon.

Maija Haavisto said...

I think there are two main types of awareness: informative awareness and awareness for the sake of awareness. For example on Twitter there're a lot of tweets like "Today is epilepsy awareness day, I hope everyone is aware of epilepsy". You can't fit much in 140 characters, but you can fit in some information - or a link or two, of course.

I've worn a blue ribbon for years and I've once been asked (by a friend) what it means for me (CFS/ME awareness). So no, not very useful.

SlapBatter said...

This has rung so many bells, most of them muffled, but will pass on this blog and then re-read and hope it has the same affect on others.