Archive for May, 2008

A perspective on Independent living

Yes, I am guilty of neglect and I could launch into an endless string of explanations of how it came to be that I didn’t post a single entry on my blog in the last couple of months. To put it simply, life has been happening and I have not had much time to share parts of it at least. This entry is not going to be focused in any way and it may well wander all over the place.

This is not an entry about technology but rather about some perspectives that I have gathered over time and all seem to recently make sense. I don’t know if I have ever blogged about my thoughts on personality generally (as derived and manifested by yours truly) but I think one of the strangest thing that I did or perhaps had to do earlier on was to involve myself in a seemingly methodological effort to understand who I am as a person as well as a handicap/disabled individual. Yes, there was a time that I thought it offensive to be called disabled but right now I don’t think it really matters. And that assertion in itself speaks volumes in a sense that I am who I am and there is not much that anybody can do (regardless of the name they elect to use) about it.

As I grew up and began to understand my limitations and the ways at my disposal to accommodate those limitations, I came to understand how truly vulnerable I truly was and perhaps still am. If you are an able bodied person reading, this I want you to assume (if you can) that you are dependent on somebody … how would you go about defining yourself? What is it that makes you an individual that is different from everyone? I would suppose the answer to such a question would preferably not include the persons on whom you are so dependent for the slightest of things. Please note that this is not an attempt to justify a desire to be alone but rather a subject of a person’s dignity in such a manner as to ensure that those on whom the handicap person is dependent upon treat him or her with the respect and dignity that he/she deserves (of course taking into account the reality of his disability).

Independent living is not about a handicap person living by himself or herself or being able to survive in the exclusion of others. But the important aspect of independent living is more about being involved in living life as a handicap person. To me at the moment this means, at the very least being made aware of things that will affect me – more so things that will affect my mobility. It does not stop with mobility and in reality for any person to be participate in a handicap’s person attempt at an independent living, the key thing to keep in mind is being considerate.

The most natural reaction for most physically handicap persons faced with the challenge of defining who they are is to put more effort to be independent. From the surface of it, it sounds like a noble decision and indeed something that should be supported. There are a number of perspectives to be considered in handicap’s person’s pursuit of his or her independence: a) the perspectives of the handicap person in question and b) the perspective of those who want to help.

One of the greatest mistakes that the handicap person makes in his or her pursuit of independence is to demand that he is treated as if he or she does not have a disability. As my father once told me: accept who you are … I am physically handicap and it is a terribly beautiful thing and I am comfortably aware that if I wake up the following morning without a disability, I shall be in the middle of hell itself. Understand the importance of accepting and/or demanding the recognition of a disability as a necessary part of that independence. For a handicap person who wants to be treated like he or she does not have a disability, please consider the possibility of being challenged to a 100 metre race with able bodied runners. Yes, I suppose you are now thinking that it would be stupid of a physically handicap person to be challenged a 100 meters race with able-bodied runners … but consider how different that is from demanding that the reality of a disability be ignored.

There are those who would make the argument that the fact of the disability is ignored in the context of making a decision – like making a decision about employment. I suppose there are some truths to that but ultimately the employer must necessarily recognize that the person is handicap and the extend of his or her disability.

For those who want to help the handicap well, I think they need to understand that ignoring the disability all together is perhaps dangerous and more often than not would be insulting. The true meaning of an independent living is being involved in decisions that affect us as handicap people. Personally, I don’t like decisions that affect me being made and effected without my consultation or at least information. The next time you are dealing with a handicap person and decides to make a decision without involving him or her, please examine your motives. I would hazard a guess that somewhere (deep down inside), you are truly convinced that you know what’s best for the handicap person in question. Then ask yourself this question: how could you? These are people who I would like to think of as having a messiah-complex of sorts: they actually believe that it is their sole mission on earth to save the handicap person hence they must do everything in their power to ensure that they do not stress or strain the handicap person. Physically handicap, usually means that the person is capable of rational thought and as such can make decisions about the levels of his or her stress and what is too much and what is not. A recent encounter has enabled me to develop a model of how such persons present themselves; it is an evolving model – still in its infancy really but should be interesting to see how it grows. Note: it is not a scientific model so you are not going to expect any published papers any time soon.

There are those who also buys into some handicap’s person’s warped understanding of what it means to live independently. These are the kind of people who despite their full capacity to assist a handicap person in living independently, they will generally keep their distance. This is a new phenomenon that has recently captured my attention – it could just be a function of a personality profile but I would definitely be interested in knowing what kind of a personality exhibit such characteristics.

The final objective of independent living is self-esteem and self-respect and perhaps this is something that everyone involved need to appreciated.


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