At the Inclusion Conference at Ribby Hall in the UK in 2005, one
of the presenters, Ken Jupp, began by stating that there were two
types of people in the world that scared him - people who have no
sense of humour, and people who think that they're right.
This has come back to me time and time again in the years since,
and they're words that I've been pondering a lot lately. One
of the things that our work in disability services tends to leave
us with is certainty of the value of people with disabilities and
the contributions they can make to our communities. It is
easy to forget that while a lot of the population may also believe
this in theory, there are circumstances that test this out.
Transferring the benefits of our experiences to others who have not
known people with a disability is incredibly difficult, and we've
got to answer the question of when it is, and is not appropriate to
even try. Until recently, I had thought this primarily
relates to the decisions raised by pre-natal diagnosis, but I've
since become aware of another similar situation.
Good friends of mine have been involved in fostering for the
past few years, with an aim to gaining permanent care, and eventual
adoption of a baby. For some time they have been waiting for
the right opportunity to come along - as you may imagine, there are
many circumstances involved, including a system designed to only
grant permanent care when the birth family are absolutely certain
that they are willing to give up care of the child. My
friends were recently offered a young baby to foster, and it looked
highly likely that this could lead to permanent care. They
have a large amount of information to make sense of as they make
their decision. The baby's mother has an intellectual
disability, already has 2 children in foster care, one with an
intellectual disability, and the other showing signs of speech
delay issues. No information has been provided about the
likelihood of the baby having a disability.
My friends got in touch with me to ask my views given my
experience with people with disabilities. My first instinct
is to want to convince them that everything will be okay, as I know
how much and for how long they have wanted to have a child.
At the same time, I want to be able to help them to understand that
even if the child happens to have disabilities, they will love
him/her anyway, and that at least I will be able to support them
well in the years to come. Having spent so much of my life
trying to shape positive attitudes towards disability, it takes an
enormous amount of control to suspend that approach and instead
just listen to the dilemma faced by my friends - I'm acutely aware
of the danger of pushing a righteous view right now. My own
thoughts are clouded by wondering what will happen to the baby if
my friends don't go ahead, about the sort of support the birth
mother is receiving after having her third child permanently taken
from her care, and how she is being supported with this
decision.
My friends don't necessarily want to hear about the sorts of
positive lives that can be lead by people with disabilities and
they don't necessarily want to be introduced to families of people
with a disability to hear about their lived experience. They want
statistics about inheritance patterns of intellectual disability,
and some kind of guidance as to how to calculate the possible risk
they could be taking.
Our work is undeniably about listening well to people and
helping them to make their own decisions. Yet I frequently
hear judgements from people who are steeped in person centred
thinking and planning, dealt out about people who have made the
decision not to go ahead with a pregnancy following a prenatal
diagnosis of disability. I follow 'Noah's Dad' the Facebook
page that is passionately promoting all the positives of raising a
child with Downs Syndrome. It is doing the most remarkable
job of communicating the joys of day to day life, and I can imagine
it being a fantastic source of encouragement to other parents of
children with Downs Syndrome. Changing perceptions of people
with Downs Syndrome is certainly a clear aim of the site.
Whether or not they would also hope that this would lead to more
people feeling confident to go ahead with a pregnancy knowing that
their child will have Downs Syndrome, I can't say. I have however
seen a lot of comments posted on the site from people pushing this
line very strongly, and with no small amount of criticism and
judgement.
I'm honestly not sure that I've been very helpful to my
friends. I've given them the names of a couple of
organisations that might be able to help them make sense of things,
and I've suggested a couple of person centred thinking/coaching
tools for the same reason (hopes and fears, circle of
influence). I have tried to remain positive and hopeful
through our conversations but tried not to push that too much for
fear of this being interpreted as pressure to make the decision to
go ahead. I don't know what decision they have made/will
make, I only hope that whichever way they go, they have some sense
of certainty, and feel well supported with whatever comes next.
Being asked to support someone with a decision like this feels
like the ultimate challenge to support positive control and not
push our own views. I'm not sure I've passed the test, but
it's left me concerned about the need for us to explore these sorts
of issues to ensure we use our experience, skills and knowledge at
the right times and in respectful ways, and know when to keep quiet
and listen. I know that I am not alone in feeling passionate
about promoting the contributions of people with disabilities. I
think we often see our greatest challenge as countering prejudice
and ignorance, whereas my experience of supporting my friends now
has me thinking that our biggest challenge may be suspending
righteousness and judgement as we employ person centred practices
in supporting people with difficult decisions in our personal lives
as well as our work.