Thursday, October 05, 2006

RSS readers and spazzes

I'm a bit of a comments freak. Love to make 'em. Yesterday, I started writing two on other peoples' blogs, but they soon became a bit of a monologue, so I've combined them into one post here.

COMMENT ON TYPE OF RSS READER USED

This is in response to CW's request to know whether people are reading her blog via RSS and if so, which aggregator.

" I read in Bloglines, but if a post really interests me I click through to the live blog to check the "flavour" of the post...and to see whether there are comments.

Bloglines makes posts feel a bit like a translated text...the substance is there, but the nuance is missing. Even seeing a photo of the author as I read their post on the live site adds a very different feel. (Like "I wouldn't have thought someone who looks like YOU would have thought THAT).

I'm going to experiment in the next few weeks with using portable Thunderbird on a thumbdrive. My main reason for using Bloglines is that I can view it from home and work, but I'd really prefer to integrate my email, browser and RSS reader into the one place.

COMMENT ON DISABILITY AND VISIBILITY AND "SPAZZES".

This one is a rather belated comment on Dee's Temporal Island about attending a workshop about disability studies for the new millenium, and how it would be great if people did research on "
how people with disabilities are often excluded from mainstream society, rather than embraced as a normal part of it"

It's a really tricky one, the visibility/normalising debate. On holidays at a medieval castle open day, I saw a sign on the wall near a wishing well saying "Make a wish. Support spastic children. Visitors have donated $22 500."

The medieval sign.

I felt like marching up to them with Mr8 and saying "This is my kid with cerebral palsy, not a spastic. It's a really medieval way you're describing him, can you please change the sign".

Then I thought "Hold on, they are raising money for these kids and people probably are going to give more to the poor little spazzes than to the regular kids who just happen to have brown eyes and cerebral palsy". The Cerebral Palsy League of Queensland was called the Queensland Spastic Welfare League until 1998, so maybe the castle just had not updated the sign.

It means degrading my kid's dignity and doing a bit of emotional blackmail to manipulate the public to give more money. It costs a serious lot of money to support a kid with reallly severe cerebral palsy , so would I be doing a disservice to those kids (and adults) by insisting that my less affected kid gets called the right thing?

3 comments:

Gwyn said...

Hello! Yes, unfortunately I've been in the habit lately of trying to do things while half asleep or distracted by other things, so my new domain has been a HUGE mess. I just sent an email half an hour ago to some people I hope can help, lol.

I'm not entirely sure what to put there yet, although I have some ideas. Mostly things like a blog, lyrics to songs I like, information about places, I dunno, it's a bit of a mess. Today I got inspired though to organise it by making my own ISBN's! Although they wouldn't technically by ISBN's I guess... More like GSWN's (Gwyn's Standard Website Numbers, hehe).

What do you plan on putting on yours? I hope you have more direction than I do =)

P.S. As you can see, I know exactly what you mean about the comments... =P

Deanne said...

Hi Sirexkat,

I'm glad my post inspired a long comment/post! I see stuff like this and wonder about it too. The 'tug at the hearstrings' approach to fundraising does mean that the messages given by agencies that aim to serve people with disabilities are often mixed or tell only part of the story. For example, do adults with cerebral palsy not need support? When people donate to Guide Dogs and get their little stuffed puppies (so cute!) do they realise they may actually be supporting other services for people who are blind - maybe services that benefit more blind people than guide dogs do? The messages don't just reach the wider community, they also have an effect on the people the community group or agency hopes to serve. Anyway, I've thought quite a bit about this and now *I've* written a huge comment! Too roo for now, Dee

CerebralP said...

Here is an interesting summary of the causes of Cerebral Palsy:
Did a medical mistake cause your child’s cerebral palsy? This is a cause for thousands of cases of cerebral palsy, but this is not the only cause possible for this diagnosis. If the answer to this question is yes, then you should look back at the time of your child’s birth, the moment of delivery. Here are some of the errors that could have provoked cerebral palsy:
- the child has stayed too long in birth canal (lack of oxygen for brain);
- prolapsed cord undetected immediately;
- excessive use of vacuum extraction;
- improper use of forceps;
- failure to perform a cesarean section (in the presence of fetal distress);
- untreated or undetected disorders after delivery;
- changes in heart rate during delivery – not eliminated in time;
- failure to plan a C-section;
- mother’s high blood pressure etc.
These are only some of the causes for cerebral palsy at a child’s birth, but improperly treated, undetected meningitis is also a cause for this diagnosis, which may appear later. You can also get more information on cerebral palsy statistics and cerebral palsy treatments by visiting cerebral-palsy-med.com.

Regards,

Michael R.