Supporting Difficult Decisions

26 February 2015

Supporting Difficult Decisions

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.

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