Eighteen months ago Delka lived in an institution for people with intellectual special needs and had no clothes of her own. Similarly, Angel was banned from shaving himself and Stoyan was doomed to a life of boredom in the institution he was stashed away in. All that changed when they left these homes and moved into sheltered housing for people with intellectual challenges. Now the three enjoy personal freedoms they had long been denied: Delka wears clothes of her own choosing, Angel shaves himself whenever he feels like and Stoyan works in a library.
You can read their stories and many others in the visually striking book Change: A Journey to Inclusion, published in November 2007 by Inclusion Europe, an organisation that campaigns for the rights of people with learning difficulties in Europe. The book is a pictorial record of the transformation from inhuman and degrading treatment in social care institutions to community-based services that the Human Dignity and Inclusive Education Programmes have brought to dozens of people with intellectual handicaps. John O'Gorman from the Irish NGO Sisters of Charity of Jesus and Mary and Walter Eigner from Austria's Die Lebenshilfe Wien initiated and sponsored both programmes, which are locally run by Bulgarian NGOs.
After a lifetime of working in the field of intellectual disability in Ireland, John, who is a past president of Inclusion Europe and Inclusion Ireland, has been active in Bulgaria, supporting the NGO sector and the families of people with intellectual handicaps since 1990. Over the years his ideas for improved institutional conditions and community services for people with learning difficulties have met mixed reactions in Bulgaria, varying from apathy to full cooperation.
In 2004 he received a plaque from then Minister of Labour and Social Policy Hristina Hristova for his contribution to the integration of people with intellectual special needs.
Yet what matters most to John is that he has been able to introduce the idea that people with these disabilities should be part of society and enjoy the same things as everyone else.
Judging from the book, the journey to inclusion is well underway: the Human Dignity Programme has equipped institutions for people with intellectual challenges with basic things such as tables, chairs, utensils, linen, medicines and medical equipment, washing machines, and televisions.
Under the same programme, in some places people have left the institutions to move to sheltered housing. Best of all, with support from the Inclusive Education Programme, children have started going to school in some regions of Bulgaria. The book visually chronicles tangible changes in Bulgaria. “We saw some terrible things and we took photographs of them because the record needs to be there,” says John. Unfortunately, the conditions in social care homes in Bulgaria were usually atrocious.
“When we started in the 1990s, most of the people in the institutions, including women, had no underwear, the food was extremely bad and there was very little medicine. It was quite common for 10 to 15 percent of the residents to die between October and March,” John says. The appalling conditions he and his colleagues witnessed inspired them to create the aptly named Human Dignity Programme, which started in April 2001.
Prior to its founding, John and his Bulgarian colleague Mariana Branzalova simply visited institutions and offered assistance. Most of their support focused on creating the parents' organisation and the Bulgarian Association for People with Intellectual Challenges, or BAPID, and raising the issue of intellectual disability and human rights. In 1999, to mark the 40th anniversary of the UN Universal Declaration of Human Rights, O'Gorman organised the first human rights seminar on disability in Sofia together with local NGOs.
Due to his long experience in Bulgaria, John can critically assess changes that have taken place here. In his view, legislation has improved - due to lobbying by BAPID and Inclusion Europe, as well as other Bulgarian and European NGOs, but its practical implementation has lagged behind. Some of the regulations are still restrictive. He offers an obvious example: in social care homes you never see children using knives and forks, only spoons.
“That's not normal. I can't find out whether there is a regulation banning them, officially or unofficially. We've been trying to introduce changes in some places and we have got as far as some people using a spoon and a fork - and talking about human dignity and the possibility of people eventually living in the community. That's a huge issue,” John says.
John nevertheless emphasises that there are people on town councils and in the NGO sector willing to work for the inclusion of people with intellectual challenges. “Pazardzhik is a fine example. They have a very good inclusive education programme which started about four years ago supported by Lebenshilfe Wien. It began with one class, and now a growing number of children are coming to it.”
The lack of inclusive schools is one of the downsides John sees in Bulgaria. Most children in social care homes, particularly those with more severe disabilities, have no access to education. “In my view, that's very wrong. They are being denied a basic human right. It's a matter for the state to adapt education appropriately to meet their needs, and the UN Convention supports that. Unfortunately, Mogilino was an extreme example - the children received no education, among other things.”
John also supported the first sheltered housing in the community, where four or five people live together rather than in institutions. “We like to introduce various ideas and prove they work. There are many councils that cooperate well and if you have a good active parents' movement in the same area, you will get what you need,” he says.
In fact, John's main goal in coming to Bulgaria in the early 1990s was to create the parents' organisation for people with intellectual challenges. Confident that only ordinary people, and in particular parents, could bring about change, John has supported BAPID from the start and was delighted to see it grow to the current 50 branches around the country.
“As a condition for our support members have to visit the institutions in their area.” In Bulgaria, social care homes are, as a rule, isolated - nobody visits them and hence nobody knows what's going on there. “The more people go in and out, the more likely they are to be concerned,” John believes.
For him, the most important change in Bulgaria is seeing parents struggle to obtain services and bring their children into the public eye. “Unless people with disabilities are visible in society, attitudes won't change,” he says.
Attitude is what John sees as the biggest obstacle to change in Bulgaria.
“You wouldn't treat people the way they were - and sometimes still are - being treated in social care homes if you actually believed they were equal. To maltreat people you have to believe them to be lesser human beings. Why do you think, for instance, that in Mogilino people didn't feed the children properly? The money was there, that was the terrible thing. I was delighted that there was outrage here in Bulgaria over the BBC film on Mogilino. It means people don't want that to be happening and it really strengthens groups that are trying to change things, because they know there is public support for what they're trying to achieve. It's a slow process but you have to keep at it.”
John O'Gorman hopes that in the future Bulgaria will develop a positive programme for the closure of such institutions, beginning with those for children. “There's no way a child should be in an institution,” he declares.
Also, more needs to be done to ensure the full participation of people with disabilities in society.John's experience in the field allows him to compare developments in Bulgaria to those in his home country.
“In Ireland, the change to improve conditions in institutions happened relatively rapidly, but the change from institutions to community-based services took 20-25 years. You cannot close something overnight, unless you have something to replace it. There is a period where you have to run the two systems, and it's expensive.
Our membership of the European Union and the additional funding that came to Ireland were very useful. That's why we are anxious that the EU funds, particularly the Social Fund, are used in Bulgaria to support change for people with special needs and particularly for those with intellectual challenges.
”EU funding may be on the way, but John O'Gorman has so far secured over one million euros in support for institutions and BAPID. Where does the money come from? “I collect the money personally from friends and colleagues. Some businesses make a small donation every year. Our support for the parents' movement comes largely from the Irish parents' movement, and most of our support for the institutions comes from similar Irish NGOs. I was CEO of an organisation and I founded a federation of such organisations in Ireland, so when I'm stuck for money, I ring all my former colleagues. We only raise about 50,000 euros a year and we target small projects.”
To support John O'Gorman's work in Bulgaria, you can contribute either to BAPID or the Sisters of Charity of Jesus and Mary. “A lot of people are investing in Bulgaria and I believe they could think about some social investment, too. People with an interest in helping can also help at a local level as BAPID has structures throughout Bulgaria. So, if you are investing in Sofia, Varna or Bansko, for example, you can give to the local branches of BAPID directly,” he says. No matter how big or small, your donation will have a considerable effect on the lives of people like Delka, Stoyan and Angel.