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Gordon's D-Zone Arcive (2006-2014)

Saturday, February 23, 2008


Personal reflections on a history of a press release

Part 2 (click here for Part 1)


I was in an institution once for a relatively short time. Indeed, I had been a patient at St. Luke's - a state hospital. Now, this same hospital has now been replaced by a modern one (Mater Dei) and as MLP would have it, parts of it should be converted to a residential institution for disabled people. Undeniably, some parents of severely disabled children might come to agree with this suggestion as this letter entitled St Luke's for disabled persons (1) demonstrates.

Granted, parents may be disheartened to discover that there is a large demand for community services, which due to limited human resources are in short supply. Understandably, they are also worried about what will happen to their children once they pass away. But, then, is institutionalisation really a solution that our society should be considering in light of the progress we have made as a society that purportedly claims that it wants to include disabled people in its fold? At the same time, what would parents know about what it’s like to live in an institution?

Do they imagine it to be a life where their children are loved around the clock?

Or even a place where their children's needs are met with love and dignity?

A place where their children will be valued as whole persons?

A place where their children will be protected from neglect or abuse?

Admittedly, I ended up in hospital because I had to receive medical treatment that would eventually save my life. But besides that, I need not say it wasn't at all a pleasant stay! Yes, I suspect that if I had spent more time than necessary in there, I would have probably lost my will to live.

Thankfully, I cannot relate any episodes of abuse in my short experience of institutional life. However, it is well documented that institutions have a greater prevalence of cases involving abuse or neglect in other countries. I dealt with this issue on my entry Infernal Institutions. Here I spoke about the horrific things that can happen in such a setting where people are segregated. Undeniably, although my experience was devoid of abuse, this period of my life left a deep scar within. Indeed, I don’t like talking about it that much. But I feel that I should speak about it since it may become a real possibility again.

I ask myself whether my life during my long hospital stay was really a life at all … I remember how everything revolved around the staff's timetable and despite me being respected by the staff and doctors there, such an existence started wearing me out. The only thing that seemed to interest people around me was my health. Don't get me wrong. I was really at risk of dying back then.

However, it's not exactly lovely to be asked repeatedly by staff, doctors, family members and even friends, about how your fever was... How I was getting on with my treatment, etc., etc. And it felt good, in the beginning, to be the most interesting 'case study' for consultants and young doctors to examine. It did make me feel important! But then, to be asked nothing that was remotely related to my old life. That was sad. And even if there was a medical issue that had to be treated, it was still ugly. Ugly ... because every aspect of your being gets sidelined in favour of your physical well being... as if you didn't really matter at all...

I also remember how desperate I was for attention! When I used to try to 'get better' so that the doctors would praise me for my progress in recovery. And I hoped that this would get me out of there... I just spent three months as life went on outside the hospital. Pathetic isn’t it? Hoping and hoping every time the doctors visited me … But the curious fact is that eventually you can start forgetting who you were ... About your past ... Yes, about who you were before! ... Your dreams... your hopes... your plans... If it weren't for the visits of family and friends I had back then, I'd probably have lost all sense of reality. You have entered 'Hotel St Luke’s’. But you can never even check out ... without professional clearance that is!

There was nothing that distinguished me from other people there, except obviously for my body! I had a bed number. Nurses and doctors woke me up and they made sure I slept at given times. Visitors came when they were allowed in. I had little choice on the food I ate. I had very little choice on who helped me bathe. And if it weren't for the Fact that I can attend to my own physical needs, people I did not know would have probably helped me in this intimate thing too. No choice at all for all people. Hardly the kind of equality I wanted in my life!

And if you think that living in a residential institution would be very different from my experience here, think again! The same tendency for your needs to be placed secondary to staff needs is what usually happens as well. Forces beyond your control will dictate your life choices. Indeed, my experience in an institution was a painful one - in spite of the respect and attention I got! Because of the way you start doubting whether the life you had was ever real. Or whether you'll ever get out from there. This on top of the physical pain and routine tests I had to undergo – but those, at least, where necessary then. In an institution, I expect, this hopelessness may lead to apathy and, as it has been termed, it may lead to 'social death'. After all, disabled people – like anybody else – need to be valued in society – where we find our purpose and value as members.

Another thing that I missed in this institutional setting and which upset me was my lack of space and privacy. I need not say that as an adolescent I was growing up ... and I was starting to become aware of the changes that were taking place in my body (you get the idea). So I had difficulty in getting accustomed to constant vigilance by staff and any potential visitors (or unwanted intruders) ... When I had my own room at home! (And still do of course.)

Unfortunately, I still find people who seem to ignore the fact that disabled people also need to be alone. I highly value my personal space and although some might even think that disabled people are ‘incomplete’ people because of our impairments, the fact remains is that we grow up like anyone else. In addition, an institutional setting conspires against us having social relations – having friends or expressing ourselves as human beings.

Not only that, but an institution also disallows the establishment of intimate relations we might wish to pursue. Indeed, the possibility of segregation through institutionalisation will also diminish our value as potential workers, friends, lovers, and parents by over-emphasizing our differences while ignoring the many common things we share with the rest of our community