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Ouch weblog: individual blog entry

3 Sep 07, 4:28 PM - Too much information?

Posted by The Goldfish

(A title not in any way meant as a comment on Jemma's most recent blog entry!)

In the early years of my illness, I was desperate for others to understand my condition, what it was and the impact it had on my life. I was involved in charitable organisations associated with my condition and supported their various Awareness Campaigns in the hope that, with time, I wouldn't have to explain myself; I would just have to utter the name of my condition and everyone would know what that entailed.

This was somewhat naive. Public campaigns can be very effective at raising money, raising the profile of a condition, decreasing stigma and nudging people with undiagnosed symptoms into having them checked out. What they can't do is educate people about all the different conditions and impairments we have.

Why not? Too much information. There are people who chose to spend five years taking a medical degree and even they get in a muddle. Other people are never going to be terribly invested in this stuff, so they pick up bits and pieces from media stories and conversations. Internationally, this September is Pain Awareness Month (US), Sickle Cell Disease Awareness Month (US), Arthritis Awareness Month (Canada), Muscular Dystrophy Month (Canada) and the "Awareness Month" of various forms of cancer. Also in September, they'll be Migraine Awareness Week (UK), National Eczema Week (UK), National Asthma Week (Austrailia) International Ataxia Awareness Day and World Alzheimer's Day. There are probably many similar events my brief Google search failed to discover as well.

Like I say, these public campaigns have their vital uses, but I would suggest that their benefits to individuals with any of these conditions are generally indirect. And when it comes to what facts filter through to the public, incomplete information is often far worse for us than complete ignorance.

People who learn of my medical label are generally confused as to the difference between this condition and other conditions which are a bit like it, sound a bit like it or are represented by similar initials. Usually, they confuse it with something someone famous has got. "Is that what Stephen Hawking has?" is a common inexplicable response (it's nothing like).

Yet even if they do know what I'm talking about, they have often read an article about someone like me and imagine they know exactly what symptoms and limitations I have, what medication I will be on and how I need to manage my condition. Sometimes this results in tremendous sympathy since "The bloke like you on the telly had a terrible life!". Otherwise, the differences between myself and the bloke on the telly can cause confusion, resulting in such diverse comments as

"You can’t have that. A person with that doesn't need a wheelchair."

and

"You can’t have that. If you really had that, you wouldn't be able to do half the things you are able to do."

Okay, so such comments come from mouths attached to minds far beyond the reach of education, but there are undoubtedly others who are confused by the seeming contradictory messages they have received. Of course, they're not contradictory messages at all; almost all chronic conditions have mild, moderate and severe manifestations and no two people are sick in exactly the same way with exactly the same symptoms and limitations. But that's way too subtle a message to get across when you're trying to teach someone about something that they're not particularly interested in.

Elizabeth recently wrote a super blog post about all the questions she was curious to ask about other people's impairments, the sort of things that occur to all of us from time to time. Absolutely no objections to this; it's not that I think we should keep this stuff to ourselves or that the details of our impairments should be taboo. However, one thing she did say:

The sad truth is that until people have some clearer understanding of the different conditions and disabilities, they will continue to treat us all the same: "The disabled" (also known as "those who really dislike being called disabled").
I would argue that the level of understanding required - as well as the understanding that a significant minority of people simply don't get a nice neat label despite having significant impairment - is simply impossible to obtain. What we need is something much simpler.

What we need, to get people to treat us like individual, is not a clearer public understanding of medical information, but an acknowledgment of the total irrelevance of medical information in our social interactions. We need to be able to state our limitations and have those limitations respected, regardless of whether or not their precise causes can be easily understood. I wonder whether such a simple message could ever be got across?

• Visit Diary of a Goldfish

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At 02:54 AM on 04 Sep 2007, Joyce wrote:

Goldfish,
I found your column very true to life. I agree wherein you stated that the benefits from the disability awareness campaigns do not really help the individual. Even with big organisations such as Easter Seals,famous for raising funds for disabled programs in the USA, they really do not help the individual. For decades my dad contributed to the Easter Seals organisation--because he thought he would be helping people like me. When I needed help getting some orthopedic needs my dad insisted that I ask my local Easter Seal office to help me;he even supplied me with his donation account number. Just to appease my dad I did write to them. The organisation replied saying that they did not help disabled individuals with their needs rather they did big projects such as giving financial support to public swimming pools for the disabled. Although I figured it would be a waste of time to even write them, my dad was astonished that they would not help me even after they knew of how long and how much he had donated over the years.

I also have to deal with people thinking that all people who had polio are all alike too. What bothers me the most is when those who had PPS later in life after living a non-paralyzed life, tell me that those like myself who were left paralyzed all of our life have it easier then those who got PPS later in life, because we never knew what it was like to walk, etc.

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At 06:25 PM on 04 Sep 2007, rachelcreative wrote:

I think your conclusion (hope) is true for more than just an understanding of disability. Considering people as individuals, looking at the person in front of you and not assigning to a neat convieniant box - would make the world a much nicer place I think.

I don't know how practical it is to not lump people into broad groups to get stuff done. But I know everyone would benefit if we all tried to be a little kinder.

Oh - for your list September also sees in the US National Invisible Chronic Illness Awareness Week www.invisibleillness.com

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