My heart speaking

Today was emotionally intense. We went to visit the Ray of Hope, an institution for persons with intellectual disability. It was heartbreaking.
It was originally a home for children with disabilities, but it has turned into a home for adults, simply because the people didn’t leave (until death).
There are 116 people living in this institution, with a varying degree of intellectual disability. Many of them are also physically disabled. Three of them are kids, the rest are adults.
As I recall there were supposed to be about 19 staff members (which included carers at the wards, a few social workers, therapists and a medical worker).

I have cried after seeing this institution, and I took the evening to relax and empower myself, so I won’t give a full reflection now.

We arrived in a minibus, and passed a big fence.
Then we saw a really nice, big, pink building with 2 levels, stretched in a beautiful garden. It looks really well from the outside. We went to the entrance and were received by the main doctor of the institution, Catharina, who led us to the meeting room. She explained some of the basic facts to us about the Ray of Hope institution.

After the introduction we could ask questions.
When Oliver asked her what their vision was in a period of 10 years, she said: “well the people will be older, so their status will be worsening, so we cannot really plan ahead”. (this was shocking)
Oliver asked again what she would want to achieve when she had the choice. She said she would like to also give room to people with milder disabilities, so they could have more activities incorporated in their programme….. (this sounded as if persons with complex disabilities cannot do activities, which actually seemed to be the vision of this institution. Again shocking..)
After once more repeating the question what she wished if she had all options of the world without any restrictions, she said that she would like to have some smaller sized living units, set up as separate apartments in the garden, with about 12 beds each.
It was generally quite obvious that this lady tried to say what we wanted to hear, but she didn’t really succeed, and the more she said, the more controversies came up...

Then we went in.
What we saw was really shocking. Most persons were tied to their wheelchairs. Some persons were still in bed (left there all day, and unable to move out of bed themselves). A few were walking around. A guy his hands were packed in cloth. One guy who smiled a lot seemed to be a ‘showcase’ and was moved to the wards we visited… Another guy who was making sounds was instantly removed after a quick phonecall from the guiding nurse..
All dormitories (3-6 beds) had locks on the doors. Basically all units were locked. Hardly any residents were in the garden, despite the beautiful weather.
There was quite some therapeutic equipment available, all brand new, but it seemed never used, dust on it.

The nurses seemed to have more attention for us than for their residents.
We heard all kind of weird things, like “we are teaching him to hear” (?!)..
There was a clock, but it didn’t show the right time (which is really bad, because it prevents orientation, and basically the highlights in a resident’s life are the meals and activities)..
Pictogrammes were said to be not understandable for this group.
The persons who are handed to the care of this institution aren’t stimulated (rather the opposite). They obviously get medicated. There is hardly any attention for the persons.
The place smells bad.

But the most painful was to realize that people are there for their lifetime. They spend their entire lives in about 2 or 3 different rooms. One guy had been there since 1977 (longer than my life). He was placed there at age 12.
This is so heartbreaking.
When I left this institution I couldn’t hold my tears. I couldn’t help thinking of my brother Rik (who has Down’s syndrome, and he resembled to some of the persons in there). My brother has a life. These people in here don’t. While they do have the potential. It’s a miserable place. Hopeless. These persons are emotionally abandoned.

Even in Uganda, in Kireka’s home (where I have been in 2007) the situation wasn’t this bad, although it was very poor, there was at least love in the air. The persons in Uganda were cuddled and surrounded by loving persons, who were lacking physical resources (even food was an issue), but at least they got the human nature of love and attention. Kireka’s home was a quite happy and cheerful place, even while it was stigmatized. The persons there were treated as persons with a heart.

The Hungarian institution Ray of Hope where we were today, was really heartless.
I’m still quite upset by it. I need to give it some more thoughts, and also for the summerschool we have to report on today’s experience. But right now, I’m too exhausted and drained.

Todays horror reminds me of the importance of this work. The persons detained in the Ray of Hope (what a name..) cannot stand up for themselves. We need to do this. It is so outrageous what is happening there. Absolutely inhumane.
I will have to take care of my own emotions a bit more, before I can make a good report. (right now I’m still getting caught by so many feelings, like anger, sadness.. I need to calm down a bit more. Right after I left the institution I felt like smashing, breaking, swearing and so on. I would love to smash that building, and take the people out of there, and give them some love. 116 souls are ignored. How can this be? How can people not see this..?? I don’t understand.
I think I will be able to separate my feelings a bit more tomorrow.
And it’s utterly sad to know this isn’t even the worst institution of Hungary, and it was really heartbreaking... This has got to stop.

After visiting the institution, we went to MDAC office in the afternoon (http://www.mdac.info/en), where we met some persons with psychosocial disabilities and intellectual disabilities who shared their stories with us. This was also very impressive, and the last session was also quite emotional for me, because of personal recognition of certain topics.

So today was a bit much, so I decided to spend my evening in a social way. I went for a walk with Jiajia, and then reduced my stomach ache with a nice cup of Chinese pua tea at the kitchen table in the CEU residence centre, with some of the students of my group.

Today was emotional, but I also feel power. The rage. The source of my activism. The fire. It burns.

It’s again late. I need to sleep to recover from this emotionally intense day. One more day of school before the weekend starts. The anger only makes me stronger. I’m fully charged now. I will fight for all of these abandoned hearts.



Link to my Dutch report of Kireka’s Home, incl. some pictures. http://punkertje.waarbenjij.nu/Reisverslag/?Oeganda/Kireka+Home/&subdomain=punkertje&module=site&page=message&id=1605881