On 5th May, disabled people, friends and allies across Europe will be marking the 7th European Independent Living Day. This year’s theme, proposed by the European Network on Independent Living, is LIBERTY.
One of the things we asked you, is to share with us personal stories of people deprived of liberty on account of being disabled (this can range from not being able to leave your apartment, to living in an institution or a group home, to not being able to leave your postcode). Below you can read the first such story.
“Some people travel around Europe for fun and sightseeing purposes, this is what you should do. However, whilst exercising my right to freedom of movement around the EU I somehow ended up testing out psychiatric institutions six times, in three different countries (Belgium, Germany and the UK). Whilst my experiences weren’t all entirely negative, I certainly now cling to my newfound freedom, and my right to live as a free member of society – something which most people simply take for granted.
You may be asking yourself, “So how did the systems in these 3 different countries compare?” Without a shadow of a doubt, all of the experiences were traumatic, particularly at the start. In Belgium I was restrained in a bed; in Belgium and the UK I was sedated; in the UK I had to spend half a day in isolation (a small, prison-like room made of grey concrete with bars at the window, only made nicer by a kind nurse playing the guitar to soothe me); in the UK I was also forced to take medication I did not want to take in a room like a soft play area; in Belgium I had all my cards stolen from my wallet by a fellow patient, and so the list goes on… It was difficult. I would not wish such an experience on my worst enemy!
At the start, I was very scared by the people all around me – I was surrounded by drug and alcohol addicts, some homeless people and others so deeply confused that they appeared to be possessed. It was only with time that I grew to accept those around me. The workshops that were arranged for us to keep us busy were the saving grace, particularly art therapy, music (playing a piano in Belgium and the UK) and even going to the gym or swimming (something I don’t do enough of normally!). In this way I could build a bubble around myself and simply forget what was going on. However, in Germany there was an intense reliance on medication (many patients seemed like they were in a permanent trance) and there were very few activities. We were just expected to pace a corridor, enjoy mealtimes and participate in one or two activities a week. Again, it was tough, and I was glad when my Mum managed to negotiate for me to return to the UK.
In all three countries, I also had regular visits from family, friends and colleagues and this was a real lifeline for me to stay in touch with the outside world. In all 3 countries, I was also gradually allowed ‘time out’, where I could go on walks in the local community and slowly re-establish my own independence. Yet even the ‘outside world’ posed its own challenges after spending time in an institution, I had to manage bills and finances once again, supermarket shopping was an entirely overwhelming experience (so many colours, lights and small decisions to take!) and cooking/cleaning was almost a full-time job. In the UK, I found that the system to reintegrate patients into their home post-hospitalisation was the best, as I was accompanied by a rather scary-sounding “crisis team” who came and visited me in my own home approximately once every 3 days. It was a very tailored approach and one which seemed to work well.
Now that I’ve got back to independent living (fantastic!) I’ve drafted a “Hospitalisation Deed” covering my wishes if I were ever unable to be responsible for my own decisions again. Due to family tensions, I checked this document through with a lawyer and I have given a copy to my employer. I follow a regular course of medication to ensure I stay as well as possible and I seek support and guidance from a medical team where necessary. With these precautions in place, I have been able to continue living in my own home in my adopted country, Belgium, I have been able to return to the workplace, I now have a wonderful boyfriend and I can basically carry on my life just as I choose. My liberty.
Don’t hesitate to share with us your stories, by sending them to Laura, ENIL volunteer, at firstname.lastname@example.org.