the media GRRRR

[eidsvold]

Is anyone else bothered when newpapers use inappropriate terms? What bothered me on the weekend was a supposed'high brow' newspaper ( guardian - i think - poor memory) chose to write an articale about a young boy with down syndrome who had been refused admission to his local school. The whole article referred to the boy as a 'downs' boy. That phrase made me so angry .... he is NOT a 'downs' boy he is a boy who just happens to have down syndrome. Why do the media pigeon hole people..... it just adds to people's ignorance and intolerance.

Okay - rant over. Still deciding whether to write to the paper or not... however after having a previous letter to the editor reworded so that the person was referred to a 'downs' girl - i am not so sure I want to.

This is interesting eidsvold. There has been a recent discussion along these lines on one of my autism lists. The upshot was that the adult autistics hate being called "a person with autism" and actually want to be called autisic. I felt it was similar to the way many deaf people feel about their culture.

Why was the boy refused admission btw? I think with new policies on inclusion that shouldn't happen.

That is a very interesting point, Jimjams. 'Reclaiming' a word seems to be a positive focal point in so many rights movements. Is there a movement towards a recognition of autistic culture within the adult groups? And as an aside, how are things going re the statementing? I hope it is going well, or at least as well as can be expected.

I think you're right hmb. I certainly got the impression that they felt that saying "a person with autism" makes it sound like a disease whereas they feel strongly that autism is part of them and who they are, and without autism they wouldn't exist. So if you say "a person with autism" then really you would like the autism to go away and therefore for that person not to exist. It's a view I have some sympathy with. DS1 will be autistic all his life and so I have to accept it as part of him.

had a visit from the lea yesterday. They were surpirisingly positive about flexischool- although not much was really said. A letter I wrote seems to have caused a bit of a stir- and they are changing the way SENkids are funded in pre-school- unfortunately for the worse!!!!!!! Can't see the new proposals working at all (they have obviously been drawn up by someone who spends their whole time with budgets rather than children)- so when they become official I will complain and put a not on the local website I've set up advising parents to get their kids statemented at nursery age. The LEA are crazy really as that will cost a lot more- tey'd be better off just finding our children properly.

I agree with you. Being autistic is central to the few people with ASD that I have worked with, bringing positive and negative things, just like any other trait. And a recognition of that seems fundimental to me, if they are to reach their full potential.

I am glad that the 'system' is considereing flexischooling, it sould like that may well give your son the best of both worlds, or at any rate the best he can get in the underfunded system we have. Are the changes in the funding you mention the 'money goes in the big pot' rather than specific funding/assistance for each child? Crazy.

yes- the big pot formula would be fine if the pot was big enough! They plan to intoduce a formula of one helper for 5 SEN preschool kids. ha ha!! Just not an option for asd really....

My DD has achalasia which means she can't swallow properly and often brings back her food, without it even hitting her stomach. In email, I have referred to her as 'living with achalasia' but the email support group I am on the adults (there are no children who post) tend to refer to themselves as achalasians - and joke it sounds like they are aliens. There is humour flying around (altho also periods of complete humour bypass) about good names for a restaurant where achalasians can eat without fear of being stared at for 'vomiting', how all tables would have vomitariums etc.

My SIL used to have a guidedog - they always referred to it as a blind dog with the accompanying jokes. Once in a pub he referred to another person's guide dog as a blind dog and the man's reaction was not pleasant.

I guess only the people concerned can make a decision about how they would like to be referred to, but even then there will be different camps.

My DD has achalasia which means she can't swallow properly and often brings back her food, without it even hitting her stomach. In email, I have referred to her as 'living with achalasia' but the email support group I am on the adults (there are no children who post) tend to refer to themselves as achalasians - and joke it sounds like they are aliens. There is humour flying around (altho also periods of complete humour bypass) about good names for a restaurant where achalasians can eat without fear of being stared at for 'vomiting', how all tables would have vomitariums etc.

My SIL used to have a guidedog - they always referred to it as a blind dog with the accompanying jokes. Once in a pub he referred to another person's guide dog as a blind dog and the man's reaction was not pleasant.

I guess only the people concerned can make a decision about how they would like to be referred to, but even then there will be different camps.

True SueW and I think with all these things there does come a point where you would want to be rid of the "problem". I guess one difference though is that taking away achalasia doesn't alter someone's personality. Probably ditto blindness (although I'm less sure how much of a person that becomes).

Before I came across autism I had heard of deaf parents who didn't want their children to have cochlea implants as it would be removing the child from the deaf culture. It was something that I didn't understand at all at the time, but I do kind of see why they would think that way now.

Actually it was in Sundays Observer...

I was told by the down syndrome association that calling people 'downs' as in downs lady, boy etc was incorrect and so that is where i got my information for that. I also would prefer my daughter just to be a baby and not be labelled as a 'downs' baby.

Jim jams I had to go and find the article. It was actually in the observer and he was refused admission apparently as his needs were too complex. The family actually ended up moving house so their son could attned another school.

There is to be a report published by the down syndrome association regarding the treatment of children with disabilities - not sure whether that focuses just on children with down syndrome or on other children as well.

According to the county council - they had expressed some reservations about meeting his needs.

It is hard when talking and writing about disability to always be politically correct - particularly because what is correct changes so often. I do know that how we refer to and name people is important, and believe it is important to try to avoid giving offence. But I listen to Radio 4's disability programmes quite often and they refer to a deaf child, or the blind, so I would imagine that the writer and editor of this news story thought that the phrase downs boy was equally morally and emotionally neutral. I remember this feature and it was very positive about the child, on his side and, I thought, raised interesting issues about inclusion, which I, and without wishing to offend you, would have thought more important than the difference between downs child and child with downs. The point here was that the issue reported related exclusively to his down syndrome. If he had been reported for another non-related reason - ie because his mother had had triplets or something (!) then I think his down syndrome would be reportedly differently if at all. I can entirely see your point about seeing your lovely baby as a baby first and a baby with downs second, but in this story his disability was the whole point of the story.

i agree aloha in some ways it was positive regarding his achievements and abilities, it was a shame his parents had to go to such lengths to get him into mainstream education. The issue for me was that recently I have seen more than this in the media about down syndrome - various articles and it was becoming a trend. BTW not offended in the least - other people might even wonder why i bothered to say something in the first place.

If you want to raise the matter with the Observer, write or email its readers' editor. They take this sort of thing very seriously. I'm a terrible complainer and have a couple of corrections published! They will also change their policy if necessary.

My sister is a patron and a trustee of the Downs syndrome association, so when I speak to her next I will ask her what their opinion is. She has a 14 year old son with ds.

eidvsold I understand totally where you are coming from. Your baby is a baby first and has a disability second. Aloha in many ways I think it is important how we refer to disability as it affects how as a society we view and value people with disabilities, although the fact that people get so hung up about it does suggest that disbility is viewed negatively. (Well it is isn't it.) I think the arguement used by the adults I know is that you would say that someone is dyslexic not "a person with dyslexia" so in other words if you go to great lengths to be pc then you must be seeing the condition as a bad thing.

I can see why the phrase a down's baby annoys eidsvold- it's like the time I saw someone write "my friend has an autistic son but she still loves him" well of course she b*** does he's her son. Why should that be unusual agghhhhhh. Mind you I can also see why "a person with autism" annoys the high functioning adults.

JimJams - I agree. As I said in my post, I think the way we refer to people is important. But in this particular instance the reference to the disability was essential as it was the point of the story. Also that I expect that, this being the Observer, there is an editorial policy on referring to disability and no offence was intended. BTW I do disagree with not giving cochlear implants to deaf children - I find that akin to child abuse and without them they will miss the window to learn speech and will always be disadvantaged in a hearing society (and will never have the chance to decide for themselves to be deaf or hearing in adulthood). To me it would be like refusing a child treatment for a correctable bone abnormality that would prevent them walking in future. I don't believe that 'curing' disabilities is in any way to dismiss or look down on disabled people. After all, treating cancer doesn't mean we think less of people with cancer, does it?

well I have found it very interesting what has been written here - i did not mean to start anything just wanted to have a moan about something that annoyed me. My husband told me I should get my pen out again and write.

Last time I wrote in surprise about a director who was alooking for someone to play a 'typical girl with down syndrome' As with all children no one is typical anything and with the range of disability that can come with down syndrome - that really is no such thing as someone who is typically down syndrome unless we are conforming to what society and the media view as typical. I just found it ironic that the director was could not let this young lady ( with down syndrome) play that role as she did not fit the definition of a typical person with down syndrome. (Whatever that is)! So much for breaking down stereotypes.

hmb i think the parents have made an official complaint. The headteacher according to the paper said that a mainstream junior school was not an appropriate placement for a child with his complex needs. The head i think was backed by the special needs staff.

I am loking forward to reading the report being published by the down syndrome association.

No but society doesn't think of cancer in the same way as it thinks of disablilty. For example no one would ever say "her son has cancer- but she loves him anyway". As the mother of a disabled child I have noticed that for some people my child is slightly less than human, and doesn't seem to matter as much- just the odd comment made by various people (including friends). I've discussed it wth other mums of disabled children and it seems a fairly common experience. That's why disability groups etc get so wound up about words.

I'm sure you're right about the article though.

I'm undecided about the cochlear implants. If you were deaf and surrounded by deaf culture (which is a separate culture of it's own) maybe you would feel that your child had a right to full access of that rather than be forced somewhere between the hearing world and deaf world (am I right in thinkin that cochlear implants don't provide "normal" hearing???- I don't know). From what I understand hearing parents are more likely to want their child to have implants whilst deaf parents are more likely to not want them. Not sure either choice is right or wrong- I would imagine it would depend on the family.

ps my last message was a reply to aloha....

eidsvold- that would have had me reaching for my pen as well. I've been having a discussion earlier today about the ills of pigeonholing people with disabilities (my main concern being that their actual individual needs are not assessed and so other issues and problems are missed).

message withdrawn

robinw- I don't think that eidsvold is saying that there was anything wrong with the particular article- I can totally understand where she is coming from. Unfortunately as I said in a previous post attitudes towards disabled children are genrally not good. I see it every time i go out with my osn. Saying the language doesn't matter is like saying it doesn't matter if you use racist terms as long as you are trying to help.

But deafness is definitely a handicap. Not only will you not be able to hear speech, you will never hear music, or birdsong or your child cry at night or even your child call you mama. That doesn't make you less of a person, but it does mean you will never have those experiences. Just as a person who cannot walk is not less of a person, but it would be better for them if the could, and no loving mother would deliberately make a decision that would mean their child would never be able to walk, surely? I do wonder if deaf people have the right to impose it on other people - after all your children are separate people to you. What if parents who couldn't walk refused treatment that could make their children walk? Or blind parents refuse children a simple procedure that could make them see? I think wanting your children to be just like you is so incredibly selfish, frankly. Cochlear implants don't offer perfect hearing, no,but they do offer a child the chance to learn to speak clearly and to hear speech and other sounds. In a world where 99per cent plus of other people are not deaf, it seems irrational and cruel to force your child into a ghetto.

Also, suppose parents were completely blind, but their child had a problem with his eyes that would eventually leave him permanently blind. Do you think the parents would have the right to prevent treatment that offered the child the chance of retaining a useful amount of sight, or should we, as a society, allow them to let their child go blind? Also, having an implant does not prevent a child learning to sign, and if a child they would prefer to be deaf in later life, they could always have the implant removed. I wonder if that has ever happened? I strongly suspect not - because having hearing is clearly and obviously better than not having it, and hearing parents are in a better position to know this than deaf ones, surely? An implant has to be given to a child before the age of three if they are to acquire language naturally - it is such a short window.

The learning language by 3 is now thought to be incorrect. Certainly hope it is because otherwise ds1 will be groing up mute.

If I personally had a deaf child who's hearing could be aided by a cochlear implant then yes I would probably go for it as I would want my child to have access to my world. If however I was a deaf mum, with a deaf partner and I felt a fully functioning memeber of my community then I may not see the point. Especially if witht eh impant my child was still seen as disabled - I may prefer to have them grow with confidence as a confident deaf person. Don't know- I'm not in the position. I'm not saying that it's right or wrong- just that I can understand where they are coming from.

When you talk to adults with disabilities you sometimes find that surprisingly they don't want to be wothout that disability as it defines who they are. SO for example some adult autistics talk about wishing they hadn't learned to talk - and remeber the early period of their childhood when they were totally shut away as the happiest time of their lives. They tend to see approaches such as ABA which aim to get rid of autistic behaviour and make the child act normal as being akin to child abuse. What has struck me about the deaf community is that it is a very powerful community with a great sense of pride. It may seem strange to those of us who can hear but I can understand where they are coming from, and I can see why parents would reach either decision- I don't think it's something that has a clearcut right or wrong answer.

in one of Oliver Sacks books there's a case study of a man who had his sight restored as an adult after losing it as a child. Everyone was very excited by the prospect (including him), but ti was an utter failure. He didn't end up with perfectly funcitioning sight- he ended up with a bit and in the end basically ignored it and "became" blind again. Maybe sometimes having only a partially working sense is worse than having none at all? I don't know. I assume that cochlear implants have some potential complications which would beed to be taken into consideration as well?

A good link- which I think presents the deaf community's arguments pretty eloquently.

here