At 12:17 AM 27/01/99 +1100, you wrote:
I thought I'd add my own thoughts to the discussion on hidden disabilities.
I have one myself - or 2 in a way, as although I have a physical disability
and use a wheelchair, I can walk, sometimes a fair way, and have no outward
signs of having any difficulty. I'm sure many of you can imagine the
problems of misunderstanding or disbelief etc that can cause from people
you encounter. "WHy do you use this scooter, you walk perfectly?"...........
The other problem is regarding fatigue and the need for sleep. Does anyone
else out there find they (1) need a lot more sleep than the average person,
and that (2) they really can't cope without it as easily - so that the need
for sleep builds up if you don't compensate for that lost - whereas the
'average person' just catches up again without any problem or need to get
extra?
In my case it's a permanent side effect from drugs I had for a serious
illness 10 years ago. WHilst for me the problems are worse because of
'complications', shall we say, which exaggerated all the effects the drugs
had, I know others with the same problems. It took one friend numerous
times of demanding for the consultant to take notice of what she was saying
before he 'admitted ~ that some people never get rid of the problems
again'. Others I have spoken to had previously thought it only happened to
them. It would really help if this problem was more widely recognised, or
even had a name, because it could help with recognition and understanding -
and BELIEF IN WHAT YOU'RE CLAIMING! Try getting understanding that you have
legitimate reasons for extra considerations because of the limited time you
can spend on your degree work - when the only source of information that
you have these problems is yourself, and you are otherwise outwardly a
totally fit and healthy person. Or to explain that the noise in halls is a
greater problem for you than for others, and you're really suffering from
it. (the latter problem my friend had). Most/many people don't understand
how (or maybe don't believe that) sleep could be different for some people
than others, or how it could make such a big difference, but it does!
If any one out there has, or knows of someone else with similar problems -
especially if it is for the same reasons, I would really be interested to
hear, as although I said I do know others, they are very few, and some I
only know of from a brief conversation in the clinic.
Sarah FLetcher
Gill,
>
>It was good to hear someone talking from personal experience. By "hidden
>disabilities" I'm guessing you mean things like ADD and Asperger's
>syndrome.
>
>>> (Perhaps hidden disabilities are an issue on there own).
>
>Perhaps "hidden disabilities" are "new disabilities" or extensions of what
>disability used to mean, that in some ways make the established disability
>players feel uncomfortable, because they destabilise hard fought over
>boundaries, relationships, meanings of words.
>
>For people with these new disabilities, neither the words "disability" nor
>"label" mean what they used to mean.
>
>One of the hardest things for me when I was struggling for understanding
>for my daughter and myself as her parent, was that the discourses on
>"labelling" were constantly misinterpreting what I wanted to do. So not
>only did I have to struggle against practical problems, but against
>well-meaning people who wanted to lecture me on the dangers of labelling,
>in ways that I found simplistic and patronising.
>
>When you label something, you solve one set of problems, and create a
>whole lot of new ones. That's the nature of language formation isn't it?
>Why should anyone expect it to be any different? The idea that "labelling"
>must be either all good, or all bad, is absurd.
>
>Once you have a label then you have a struggle over who defines it and
>how. Which makes life interesting, gives you something to do...
>
>Judy Singer
>
> >
>>
>> I am very interested in the issue of 'labelling', and was interested (and
>> in agreement with) John's comments re negotiating labels on a daily basis
>> depending on who 'they' encounter.
>>
>> I find that I negotiate my own feelings re labelling on a regular basis.
In
>> my heart I (think) I believe that labels create prejudice, and that they
>> should be reserved for jam jars. However, I don't think that our culture
>> or society allows me to hold true to that belief for the following reasons:
>>
>> When I realised that my own son had 'hidden disabilities' for want of a
>> better term, I was extremely keen to be given a diagnosis/label. (Are they
>> the same thing?)
>> This enabled me to read and research what have amounted to very complex
and
>> subtle difficulties in life and learning. In being 'well read' on his
>> particular 'diagnosis' (which is poorly understood) I felt more able to
>> offer him appropriate support at home, and more capable of fairing well in
>> the battle-field of education. In deed I have made a career of being a
>> 'pro-active Mum'.
>>
>> Now that I know the nature and actual and potential consequences of his
>> particular difference, the label has retreated into the background, but it
>> enables me to offer my son an honest reason why he finds things more
>> difficult that his peers . This really seems to calm his frustration.
>>
>> I speak to many children and adults with the same 'diagnosis' and they are
>> ALL pleased to have a hook on which to hang their difficulties. Indeed
>> many of those who were diagnosed in adulthood have been almost liberated.
>> Liberated from a history of assumed stupidity, laziness or disruption.
>> They have found great relief in the label, and some have become very
>> pro-active in their claim to equality.
>>
>> However, having acquired the educational resources for my son to meet his
>> needs (via his label) I am truly concerned that his educational provision
>> is moulded around his label rather than his unknown potential.
>
>> 'He'll never be a high flyer' is not an unfamiliar turn of phrase to be
>> directed at me. Said about a child of almost 8, at the very beginning of
>> his school career. Frightening.
>>
>> It is a difficult, and I know contentious subject, but I would be very
>> interested to hear what other list members think. My own thoughts and
ideas
>> changed dramatically of course, when I became involved on a subjective
>> level.
>>
>> (Perhaps hidden disabilities are an issue on there own).
>>
>> Regards.
>> Gill.
>>
>
>
>
Sarah
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