Sunday, September 2, 2012

The word "invisible" is problematic in advocacy

This one is only going to be interesting to advocates.

Many people talk about "invisible illnesses" and with the best of intentions use it to try to explain The Pandemic.

I think that can send the wrong message.

I present alternatives that I hope you will consider.

"Invisible" has MANY meanings

You know what you mean, but your audience will probably fail to understand.

Most meanings of "invisible" are false and misleading. First I will talk about "but you don't look sick".

Some meanings are true, like "people do not notice the existence of bedridden and housebound".

What definition of "looking sick" are we using?

Quote: "My days and nights are filled with restless sleep interspersed with injections, needle changes (for a syringe driver), nappy changes (as well as experiencing transient paralysis and at times being blind and mute, I am doubly incontinent) and medicines/fluid being pumped into my stomach through a tube. My life could be better if I had a Hickman line (line which goes into a major vein and sits in the heart) for IV drugs and fluids, but such a thing would likely kill me." — Emily Collingridge

Are we trying to disown Emily?

When the entire disease is called invisible, many people will assume that it is not life-threatening. Emily died from the disease.


Many sufferers look sick, so it is mistaken to imply that nobody looks sick.

For an explanation of how this misunderstanding arose, please read my post on characterization. It goes into detail and makes a point about the movement.

Accepted diseases are VERY often invisible

Select from a list of accepted chronic diseases at random. How many of them tend to "look sick"?

What's different from accepted diseases is actually POLITICS.

"Invisible illness" works MUCH better for accepted diseases

This is why "invisible illness" works better for accepted diseases.

Insurance companies are not actively campaigning to pretend they do not exist.

The political context is completely different.

What to do instead

Of course people sometimes say, "But you don't look sick". I think this is what "invisible illness" tries to address. So we do need an alternative.

If you ever feel the need, perhaps just say, "Do all AIDS and diabetes sufferers look sick?" and stare them down.

Being taken seriously requires having the DISEASE be taken seriously.

"Invisible illness" can be denigrating

"Invisible illness" is well-intentioned, but it can sometimes sound like an excuse: "Alice, you were going to explain how you are sick?" "Yes, Bob, thank you for asking. My dog ate my homework. My sickness is invisible just like leprechauns."

Many will think "debatable". People are dying. How do you debate that?

By calling a disease "invisible", you can actually encourage misopathy.


In the hands of denialists, "invisible" is like "vague", "mysterious", and "controversial". They know that obfuscation keeps scientists away.

Looking sick does not matter

Doctors and others are very willing to disregard obvious and extreme signs and symptoms.

You can practically have blood spurting out and still be handed an antidepressant. Or told that you jus' need to have a baby, darlin'.

You cannot assume that if you look sicker, you will be taken seriously. EMILY WAS NOT TAKEN SERIOUSLY.


So you might be wondering what does matter? Among other things, authority.

Authority

Most people require the approval of authority before they take things seriously. If you say, "I have HIV/AIDS", then people will believe that you are sick, because authorities have approved your disease.

You do not have to LOOK sick!

Biomarkers are ignored when authorities tell doctors to ignore them. And they have been doing that.

Misopathy is not because you "don't look sick"

Doctors do what they are told to do. Scientists do what they are funded to do.

That is how the persecution has been controlled. It is not because you don't "look sick"! (If you don't.)

Common meanings of "invisibility"

Back to the many meanings of "invisibility".

Here are a few meanings of "invisible" that your audience will assume:

  • "They don't look sick" (false)
  • "Has no evidence" (false)
  • "Not important" (false)

There are other types of invisibility — my most critical point

The facts of the disease (see the terse overview called Three things) are politically invisible to scientists and physicians and funders and other policymakers and activists.

Bedridden and housebound are socially invisible, even within the movement, and politically invisible from essentially all research. (You might also be interested in Severity and More you than you.)

Those are the critical invisibilities for advocacy. We can say the disease is POLITICALLY invisible. Or "selection bias".

We are talking about a disease, not an illness

Most normal people think of them as synonyms, but "illness" is warped by politics where "disease" is not.

What you are really doing

Calling your disease "invisible illness" is actually like asking people to attack you.

Instead you can say, "Would you say that about AIDS?"

Conclusion

"Invisible illness" has the best of intentions, but does it help us?

I hope that's at least food for thought.

Samuel

2 comments :

  1. M.E. Is not an invisible disease. It is a CENSORED disease. There is a difference.

    ReplyDelete
  2. Hi Mary,

    Yes, that is a good way of putting it.

    ReplyDelete

I could not ask for a better readership. Your comments are valuable, here and elsewhere. So EMAIL ME if they do not go through! (Click on "Contact me" link in blog sidebar).

Choose any option except Anonymous, as my readers and I want to know if Awesome Comment 1 has the same author as Awesome Comment 2. If the other options don't work for you, try Name/URL to enter your name or handle. URL can be blank.

The point is: we want your comment!