Sharing experiences on inclusion and community living – a personal account from Inclusion Ireland CEO Paddy Connolly
Published: 10 July 2014
Inclusion Ireland is an organization fighting
PSOUU is an organisation supporting
Inclusion Ireland, Inclusion Europe and PSOUU
They had many meetings in Poland.
At the meetings they talked about things like:
Inclusion Ireland had the great privilege to work with Inclusion Europe and PSOUU, the national association which supports people with an intellectual disability and their families in Poland, over a number of weeks between May and June 2014.
We were asked to deliver training and information on aspects of our work in Ireland, particularly self-advocacy, working with volunteers, influencing policy, working with local Government, and disability policy.
Therefore, I travelled to Krosno in May, and Gdansk in June, while two of my colleagues travelled to Kolobrzeg, Glowgow and Zgierz. These cities show you different regions of Poland, giving us a good outlook on PSOUU’s work. As part of our visits, we were shown around some of their services, met staff and managers and spent time with self-advocates.
It is too simple to say that this trip was a training event, or that Inclusion Ireland has had any ‘knowledge’ to impart to our colleagues in Poland. It is better to describe it as a conversation, or a sharing of experience, as PSOUU is facing the same question that we all face – how do we change the way we work so that persons with an intellectual disability enjoy their full rights as citizens? The answer to this question though, is the responsibility of all of society and not just those of us who are in the ‘disability sector’. It is the responsibility of all Government departments and agencies, all local community clubs and associations, all members of society.
To have rights as a citizen means to be more than just recognized as a citizen; it means to have opportunities to participate fully in community life; it means to have the opportunity to play a valued role in your community.
My impression of PSOUU is that it is an organization committed to change, but one that faces some challenges as well. There is something very special about the organization rendering it unique, but also something making it very easy to relate to, in that it reflects the same issues being discussed in Ireland and elsewhere.
Clearly, at the level of leadership, people talked about the importance of developing self-advocacy, and of committing to the voice of persons with a disability having more influence in their organization. What makes PSOUU special, and perhaps unique, is that many people in the organization, the majority I think, are family members of people with a disability.
The organization is the main provider of services to people with an intellectual disability in Poland. And here they face a challenge.
These three relationships: service provision, individual choice, and institutional processes are three very different things which do not do well if they are dependent on each other.
Which is the most important relationship? Fort the organization to survive it must provide services for the State, but the model of service it wants to provide, or the State wants it to provide, will not provide autonomy and self-determination to the individual. People do better the fewer professionals, or paid support, they have in their lives – the ordinary is the most wonderful.
Living ordinary lives in the community is where people with a disability have said they want to be. In a diagram it might look like this:
In our conversations, we addressed the difference between treating people with ‘dignity’ and people having ‘rights’. Dignity can be understood by each person to mean different things, e.g. respect, care, love etc. But ‘rights’ are defined in law and international agreements. So rights-based work puts the self-determination of the individual at the centre of what we do. We talked about the difference between self-advocacy which is supported by service providing organizations, and independent self-advocacy. The risk for self-advocacy which is not independent from service providing institutions is that self-advocates talk about issues in the institution rather than their ambitions, hopes and dreams beyond those walls. We talked about the needs of younger parents and how to connect with them, and the risks faced by organizations which do not learn to first listen to what people have to say, and afterwards design what it is they are going to deliver.
These questions challenge us all, and the answer will not be found in designing services for large groups of individuals, but in individuals designing the support and services they want.