I want to risk taking this issue of parents, allies, voices, stories and
movements a bit further. Originally I worked for the National Deaf
Children's Society in the UK. At that time (and the organisation has
changed since), although it was called a 'children's society', everyone
knew and many said both publicly and privately that it was a parent's
organisation - and a predominantly white, middle class, educated parent's
organisation at that. Most of my work was effectively supporting children
through their parents (or their teachers). We only ran one child-centred
event a year. Looking back, and in the context of the research on the Life
as a Disabled Child project, the children had no collective 'voice', though
there were some individual parents who DID encourage their kids to say what
they felt. Most parents were either traumatised or convinced that their
kids were incompetent to express their own views and had no future in that
arena. The latter parents also demonstrated that they felt that I, as a
deaf adult, was no more competent than the children.
So ever since I have had this question in my head 'Why are PARENTS the best
people to 'represent' disabled kids in 'our' struggles against oppression?'
I am not denying that there is an institutionalised power inequality
between adults and children, nor am I denying that there are some disabled
kids who MAY not be able to represent themselves,though I would want to be
sure that this was not because society (including some sections of the
disability movement) disables them in the way that it constructs knowledge,
time etc. etc. At the moment, I can't be sure, so I still have questions in
my mind about this issue of representation.
When Carolyn writes:
>hearing children of Deaf parents do not experience oppression in the same
>manner that those who belong to/identify as being of the minority group do.
>Yes, a hearing child can be socialized and, therefore, know and be Deaf
>culturally -- as Lennard Davis has frequently pointed out, he is
>bi-cultural. And, as Lennard Davis has also, and as frequently, pointed out
>he is not Deaf and *has not experienced the discrimination, prejudice, "what
>it's like to be deaf," oppression, etc., that someone who is Deaf/deaf does*.
this is relevant, though a kind of reverse argument. Is there not a
question here about the nature of the experience of oppression -
specifically *whose* experience - which has been lost in our attempts to
collectivise the notion of disability? (For the benefit of the purists, I'm
not suggesting that this collectivising is a bad thing, only that perhaps
we need to conceptualise it differently). I don't deny that parents of
disabled children are oppressed, but what I think we need to address is
whether this is *disability* oppression. For example, when parents enter
into these awful tussles with medical and educational 'professionals', is
this about *disability* or is it about unequal professional/'amateur' power
relations that many *patients/clients* experience? I know they are linked,
but are they the same thing? Priscilla Alderson has done some excellent
work on this, though not quite in the context I'm referring to.
Equally, and this one is more difficult, if a parent makes a successful
career out of studying and promoting disability while their disabled child
remains invisible and voiceless, is this helping to remove or contributing
to disability? Putting ideas about privacy and the child's choice on one
side (though these are important), if that parent makes a point of
including their child and showing how their child can be included in these
activities, does this not represent a different scenario? I ask these
questions again because when, in my past life, I sat listening to parents
saying all 'the right' things, it was common for the children to be in the
room but treated as if they were not there.
There is absolutely no way that I would wish to see anyone's stories
silenced, and I think my own story has demonstrated that I truly believe
that, but what we have to get to grips with is the idea that when certain
groups of people come together, *even when they ostensibly have the same
goals*, hierarchies form which are related to power, competence and a whole
number of other things. And, in some circumstances, these hierarchies are
so institutionalised that it leads to some voices being silenced - often
the very voices that we are trying to liberate. It is for this reason that
I tend to support the argument that parents and disabled people need spaces
which are their's and in which they can establish their knowledge, ideas,
integrity in addition to having common ground where they can share. As I
say that may mean looking at different ideas about the collective.
And on the subject of an earlier point about non-disabled partners of
disabled people, I want to perhaps state the obvious. Parents generally do
not choose to have a disabled child and most parents are traumatised
initially when they find they have a disabled child - and yes, both the
expectation for a 'perfect' child and the trauma are constructed. Partners
presumably *do* choose to form a relationship in full knowledge of
disability and there presumably will be many reasons why this choice is
made (not all of which are egalitarian as some partners may be like
professionals who *choose* to work with disabled people for the 'wrong'
reasons e.g. exploitation, abuse of power). Is there some way in which the
notion of parent and the notion of partner can inform how we look at our
relationships? Has anyone done or seen research on non-disabled partners
which is not focused on 'caring'?
Sorry to go on.
Senior Research Fellow in Deaf and Disability Studies
Department of Education Studies
University of Central Lancashire
Preston PR1 2HE
Address for correspondence:
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