The Kerryman (South Kerry Edition)
‘We have never been asked to promote the things our disabled children can do or their value as human beings’
KATHRYN O’SHEA AND TOM HEALY OF ADVOCACY GROUP INCLUSION IRELAND EXERCISE RIGHT TO REPLY TO A RECENT ARTICLE ON ST MARY’S CONTROVERSY
AS parents to people with disabilities, we were both left deeply offended on behalf of our children by your article ‘When jargon fails the vulnerable’ which appeared on your newspaper on Saturday, 11th February 2017.
The author asked: “if the term ‘handicapped’ has been banished for all eternity, please can I have a new label for my brother?”
That term harks back to a time when people with disabilities were institutionalised and hidden away from society. It was people with disabilities themselves who rejected it.
But our overriding question from reading the article was why do we need to use labels at all?
It seems that the answer is that we are required to label our family members in order to access what boils down to basic and essential services.
From the time our children are born, we are set on the road of labelling them based on their ‘deficits’.
We must prove how ‘severely’ disabled our sons and daughters are to secure any form of support from basic social welfare entitlements to school supports, to home support to allow people to live in their own homes and respite for family carers.
We have been asked to describe our family members in terms of what they cannot do, be it walk, talk, wash, feed or dress themselves; to parade them in front of the media and to battle for every service or support.
We have never been asked to promote the things they can do, the skills they possess, their personalities, and their value as human beings.
A mindset of fear and anxiety consumes families into putting their worst foot forward to access services that they know, when done well, will build on the skills and capacities of their son or daughter. Parents know if they don’t fight for every service their son or daughter will miss out, and will live as second-class citizens. Is it any wonder that we are conditioned into focusing on the ‘deficits’ of our family members?
We don’t classify our ‘typically functioning’ members of society in terms of how able they are – so why would, or should, we ask how disabled you are?
Classifying people on particular grounds of race, religion, gender or sexual orientation has been used throughout history to separate and often denigrate that group’s position in society.
It is not ‘political correctness’ to afford these groups respect and decency, so why does the author dismiss as ‘politically correct’ those of us who believe people with disabilities or complex needs should be shown the same respect?
The policy of de-institutionalisation ‘Time to Move On from Congregated Settings’ is described in your article as “failing the most vulnerable”.
It is true that the implementation of that policy has not gone to plan or to schedule and that, as a result, families are fearful and anxious about life for their family member in the community, outside of institutions, particularly when a family member has been in care for a long time.
These fears are understandable and have not been eased by government policy saying one thing and the systems and services not delivering.
There does not seem to be a shared understanding of why we need a cultural shift or why we need to move away from large institutions for people with disabilities.
What we cannot accept is that there is a need to revert to the language of a particular era which saw people with disabilities segregated from the rest of society simply because they were different. Using the word ‘handicap’ to suggest that a person cannot or should not live in a community setting is a step back to those times.
Your article describes as ‘nonsense’ the possibility of some people living independently in a community setting. Community living does not mean living independently, completely self-sufficient and without support.
If it did, very few of us could be said to live independent lives.
We all need supports to live our lives with freedom and purpose and we should all be afforded the supports necessary to enable us to do this.
Community living means people with disabilities having the same choice and control over where and how they live as everyone else, having meaningful activities and opportunities mix with the local community.
It is not the policy of ‘Time to Move On’ that is failing the most vulnerable, but how the policy is being implemented and how we are being directed into categorising people.
Creating categories of “personhood” does nothing to unite societies. If we really want to be supported to, in turn, support our family members then we must concentrate on our shared sense of humanity.
Our challenge as family members is not to allow our sons and daughters to be reduced to their label, but to ensure that their unique skills, attributes and personalities are promoted and valued.
It is now time to open up the ‘disability’ debate to the wider community and to society in general.
We believe society has a right and a responsibility to participate in the discussion around how we want that society to function and how we want our disabled citizens to be included.
Kathryn O’shea (Chairperson of Inclusion Ireland) and Tom Healy (Former Chairperson of Inclusion Ireland)