What do you think of this view on CHARGE? My thoughts in CHARGE Family Support Group newsletter

[Guest guest]

Hi Everyone

I have finally finished the newsletter and I set out below my thoughts,

which I have not done. Given I asked for your views it is only fair I give

you mine. I refer to another article that I have reproduced from an earlier

newsletter and will email those who posted responses not already on the

mailing list the newsletter.

Regarding the dbI reivew I do not when this will be published but will again

post once that is published.

Regards

Simon

YOUR* *THOUGHTS* *PLEASE**

Set out below is a comment that appeared in dbI Review. This was written by

a French Psychologist who is head of a deaf blind school and has worked with

children with CHARGE. The article is the second in a series of articles on

CHARGE Syndrome and is on the first cognitive results. There is no issue

with the actual article, much of what is written I can relate to .

However the comment when posted on the CHARGE Listerv has generated more

posts than any other subject and much debate with most contributors strongly

disagreeing with her. Please read the comment and send me your thoughts

since I have been asked to contribute to a response that will appear in the

next dbI Review and would like to include feedback from the UK.

I have set some of my own thoughts after the comment. I have also

deliberately ignored here any comments made by other people (both

professional and parents) in the debate to date except a couple that refer

to sign language and French. The feedback from that debate will be used in

the dbI review article.

*Comment*

" We can see all the weight of the name of this syndrome CHARGE. It is

composed of an association of letters which forms a word, the word 'charge'.

We think that this label can have consequences and repercussions on the

identity evolution of these children.

* *

We have read, in a number of texts and scientific papers, the use of this

word " the charge children " , " the charge " that can evoke a sense of a burden,

a responsibility, guilt. In the same way, the French sign language label for

this syndrome also represents a burden on the shoulder.

The association of these letters in this order has the potential we believe

to deeply modify our mental and psychological representations of these

persons. This word, indicating a condition, and becoming its name,

influences the representation that these people have of their body, of their

body image. We believe it is joining this condition to their identity. More

than labelling a condition, this word functions as a stigma. "

*

*I read this comment and immediately thought that it was so negative

particularly as the author had worked with children with CHARGE. I obtained

the article that it followed because I wanted to read it in context with the

article.

By the time I have started writing this piece I have read the comment

numerous times and I can see what the author is getting at. However I am

still deeply troubled by the third paragraph. All conditions have to be

named and by reason of this whatever the name it will become a label and

those without insight will be limited by what they know (or do not know) of

that condition by its label.**

In an earlier CFSG newsletter Park who is an MSI teacher with Sense

(who happens to be 's MSI teacher) wrote an article on labels - both

the negative and positive aspects. I make no bones about reproducing it

again because it says much that is relevant to this comment.

I followed this article with a personal statement of which here is an

extract:

''s article raises a number of issues that Flo and I have previously

discussed with him. One of these is identity, which I would like to touch

upon. our elder daughter was born with CHARGE Syndrome. How do we

describe her – a child with CHARGE, a CHARGE child … or our daughter? She is

first our daughter … ..and third a child with CHARGE. She is not a CHARGE

child as this identifies her first and foremost medically when her first

identity is as a person – 'People First'. '

The French psychologist seems to be too hung up on the name and the

limitations that this imposes. This unfortunately is not uncommon, how many

professionals have you met that make assumptions because you or your child

has CHARGE? From a parent's perspective the diagnosis therefore the name is

important since it enables us to seek the appropriate support and assistance

for our child and maybe know what to expect. We do not expect assumptions

and limitations imposed by reason of a name/label.

In French the word 'charge' does mean loaded or burdened but can also mean

expense, cost, custody, employment etc. The meaning though should not matter

because charge is just a word whilst CHARGE is an acronym. Using the phrase

'charge children' to support the burdened argument compounds the problem.

One should be able to look beyond the meaning of the word particularly in

this circumstance where a meaning foreign to the original use has been

imposed.

I think it further unfortunate to illustrate this argument with the French

sign for CHARGE. The author should be attacking the use of this sign rather

using it to support an argument. Look at the US where if you remember Bonnie

Haggerty's article from the April issue of our newsletter where she writes

about the CHARGE Syndrome Foundation in the States organising a committee of

young adults with CHARGE to devise or decide on an ASL sign for CHARGE. This

is empowerment not stigmatising. Even here with our logo of the knight on

his charger is positive. Another example is the Australasian newsletter's

title Families in CHARGE. The latter is just one example of using the word

CHARGE where the positive meaning of being in control is used.

The more I consider the comment the more I see that the psychologist cannot

get beyond the meaning of the word 'charge' in French in how she is looking

at the stigma arising from the label. What is the impact of the name USHER

on how she considers this syndrome that also causes deafblindness?

* *

[Guest guest]

simon i like that alot yes we have CHARGE i soemtimes think if i didnt have

this then what would i have LOL

>

> Hi Everyone

>

> I have finally finished the newsletter and I set out below my thoughts,

> which I have not done. Given I asked for your views it is only fair I give

> you mine. I refer to another article that I have reproduced from an

> earlier

> newsletter and will email those who posted responses not already on the

> mailing list the newsletter.

>

> Regarding the dbI reivew I do not when this will be published but will

> again

> post once that is published.

>

> Regards

>

> Simon

>

> YOUR* *THOUGHTS* *PLEASE**

>

>

> Set out below is a comment that appeared in dbI Review. This was written

> by

> a French Psychologist who is head of a deaf blind school and has worked

> with

> children with CHARGE. The article is the second in a series of articles on

> CHARGE Syndrome and is on the first cognitive results. There is no issue

> with the actual article, much of what is written I can relate to .

> However the comment when posted on the CHARGE Listerv has generated more

> posts than any other subject and much debate with most contributors

> strongly

> disagreeing with her. Please read the comment and send me your thoughts

> since I have been asked to contribute to a response that will appear in

> the

> next dbI Review and would like to include feedback from the UK.

>

> I have set some of my own thoughts after the comment. I have also

> deliberately ignored here any comments made by other people (both

> professional and parents) in the debate to date except a couple that refer

> to sign language and French. The feedback from that debate will be used in

> the dbI review article.

>

>

> *Comment*

>

> " We can see all the weight of the name of this syndrome CHARGE. It is

> composed of an association of letters which forms a word, the word

> 'charge'.

> We think that this label can have consequences and repercussions on the

> identity evolution of these children.

> * *

>

> We have read, in a number of texts and scientific papers, the use of this

> word " the charge children " , " the charge " that can evoke a sense of a

> burden,

> a responsibility, guilt. In the same way, the French sign language label

> for

> this syndrome also represents a burden on the shoulder.

>

> The association of these letters in this order has the potential we

> believe

> to deeply modify our mental and psychological representations of these

> persons. This word, indicating a condition, and becoming its name,

> influences the representation that these people have of their body, of

> their

> body image. We believe it is joining this condition to their identity.

> More

> than labelling a condition, this word functions as a stigma. "

> *

> *I read this comment and immediately thought that it was so negative

> particularly as the author had worked with children with CHARGE. I

> obtained

> the article that it followed because I wanted to read it in context with

> the

> article.

>

> By the time I have started writing this piece I have read the comment

> numerous times and I can see what the author is getting at. However I am

> still deeply troubled by the third paragraph. All conditions have to be

> named and by reason of this whatever the name it will become a label and

> those without insight will be limited by what they know (or do not know)

> of

> that condition by its label.**

>

> In an earlier CFSG newsletter Park who is an MSI teacher with Sense

> (who happens to be 's MSI teacher) wrote an article on labels -

> both

> the negative and positive aspects. I make no bones about reproducing it

> again because it says much that is relevant to this comment.

>

> I followed this article with a personal statement of which here is an

> extract:

>

> ''s article raises a number of issues that Flo and I have previously

> discussed with him. One of these is identity, which I would like to touch

> upon. our elder daughter was born with CHARGE Syndrome. How do we

> describe her – a child with CHARGE, a CHARGE child … or our daughter? She

> is

> first our daughter … ..and third a child with CHARGE. She is not a CHARGE

> child as this identifies her first and foremost medically when her first

> identity is as a person – 'People First'. '

> The French psychologist seems to be too hung up on the name and the

> limitations that this imposes. This unfortunately is not uncommon, how

> many

> professionals have you met that make assumptions because you or your child

> has CHARGE? From a parent's perspective the diagnosis therefore the name

> is

> important since it enables us to seek the appropriate support and

> assistance

> for our child and maybe know what to expect. We do not expect assumptions

> and limitations imposed by reason of a name/label.

>

> In French the word 'charge' does mean loaded or burdened but can also mean

> expense, cost, custody, employment etc. The meaning though should not

> matter

> because charge is just a word whilst CHARGE is an acronym. Using the

> phrase

> 'charge children' to support the burdened argument compounds the problem.

> One should be able to look beyond the meaning of the word particularly in

> this circumstance where a meaning foreign to the original use has been

> imposed.

>

> I think it further unfortunate to illustrate this argument with the French

> sign for CHARGE. The author should be attacking the use of this sign

> rather

> using it to support an argument. Look at the US where if you remember

> Bonnie

> Haggerty's article from the April issue of our newsletter where she writes

> about the CHARGE Syndrome Foundation in the States organising a committee

> of

> young adults with CHARGE to devise or decide on an ASL sign for CHARGE.

> This

> is empowerment not stigmatising. Even here with our logo of the knight on

> his charger is positive. Another example is the Australasian newsletter's

> title Families in CHARGE. The latter is just one example of using the word

> CHARGE where the positive meaning of being in control is used.

> The more I consider the comment the more I see that the psychologist

> cannot

> get beyond the meaning of the word 'charge' in French in how she is

> looking

> at the stigma arising from the label. What is the impact of the name USHER

> on how she considers this syndrome that also causes deafblindness?

>

> * *

>

>

>