I have heard this term used extensively over the past week or so, or at least an alternative form of the word and what was to me a new term: de-congregation. This new language that I was experiencing was at the United Nations in Vienna, where I was attending the Zero Conference, whose aim is to reduce barriers for people with disabilities. The association was automatic at first, with an assumption that this was a more universal term to use in such an international setting. However, as the week went on and I listened to more seminars; I became less self-assured about my original assumption. It was always and quite rightly being used in its real sense as to disperse a gathering of people from a building – usually a home or care setting where they had been institutionalised. Now you might just be asking yourself where I am going with this? It might just seem pedantic, but the more I thought about the two phrases, the more I began to question the difference between the two. All of the associations made between the two phrases were and are directly related to buildings, care home or some kind of medical setting. Vacating these places and substituting them for community-based settings was certainly an act of de-congregation, but what about the institutionalisation part? Think about this with me for a moment. Institutions have fixed times for doing things irrespective of the individuals needs and for those of us who have been transferred onto a home care package, this is still the case. The person needing personal assistance is at the behest of the service provider, unless they choose to become an employer and arrange their own services. Even with this, the individual is limited to the time that has been allotted to them for personal care only. There is not an allowance for time to complete activities or personal relationships. People are offered clubs or day centres to go to, but this could be to do activities that they are not particularly interested in or spend time with people who are not their real friends.


However, moving on from that point, we often hear of organisations being institutionally sexist, racist or homophobic. Can or is society institutionally ableist? If I am ever prejudged because I use a wheelchair or because I am disabled – does that mean I am institutionalised by public perception of needing pity, being inspirational, or reliant upon state benefits? If so, who creates these institutional barriers? Is it government, the media, the third sector or is it our own community? We are always campaigning for one thing or another and it is usually for improvements from the state. So, are we creating these perceptions or are the facts being used, twisted or taken advantage of to promote an agenda for someone else? Very few people understand the world of disability except the disabled world themselves. There are lots of people out there who are very learned in their experience and they could well be the closest to being in our shoes, but they are not in our shoes. One of the greatest institutionalisations is surrounding poverty within the disabled community and our perceived reliance upon the state. I won’t disagree that there is poverty, but that is not the case for everyone, and for some it can be resolved by the provision of meaningful and well-paid employment. Yet we all seem to be institutionalised by it. Many of us suffer frequently from the injustice of poor accessibility, but it is always portrayed as a pity story which can often receive a backlash from people who feel that everyone has difficulties as we are just moaners! What is most disappointing is that rarely does anything change at a speed which makes a noticeable difference to a person’s life in short period. Racism, sexism, ageism and so on is often dealt with immediately, but ableism is always a resolution at the pace of a snail.


Either way I am still contemplating whether our English understanding of De-institutionalisation and the translation of de-congregational is the correct one; or if de-institutionalisation is a myth and de-congregational is the best we can hope for?

Author: Michael Holden
Michael, who has Motor Neurone Disease, is a member of several organisations; alongside the Centre for Independent Living, in NI he is also a member of the European Network for Independent Living in Brussels as well as Deputy Chairman of a patient working group at the Royal College of GP’s here in Northern Ireland.