Imprisoned in a tunnel vision


It had to be with a group named « The Living End » that I reverse my habits. I therefore begin this article with a song extract:

The Living End – Prisoner Of Society

«Well we don’t need no one to tell us what to do
Oh yes we’re on our own
And there’s nothing you can do
So we don’t need no one like you
To tell us what to do (…)

Cos I’m a brat
And I know everything
And I talk back
Cos I’m not listening
To anything you say

And if you count to 3 (one, two, three)
You’ll see it’s no emergency
You’ll see I’m not the enemy
Just a Prisoner of Society»

When it was released in 1998, that song was meant to empower a younger generation of Australians. Today, it speaks to me as a hymn of empathy of society towards disabled people. I know, I know, it’s a little weird said like that, but let me explain myself in my favourite way: an anecdote.

Once a week, I walk with other clients of the rehabilitation centre in a park. It’s late in the morning and it usually takes place under the rain (at least since I’ve been in the group). We are about a dozen with or without technical help (walkers or walking poles). I really appreciate this activity because it allows me to share with others who are experiencing the same frustrations as I do.

So we were on an April day when the grey clouds began pouring their torrents once we were about halfway through. We crossed city employees who were wandering around in a truck and who seemed to be heading for a construction site further away. While we were all wet from head to toes and came up to the chalet level (that we were really looking forward to reach), the employees told us that we were not allowed to go that way. There was work, they were asking us to turn back.

Fortunately for my pressure, another client went to explain to them the particularity of our situation while mentioning that there was no indication anywhere that could have made us guess that it was closed. She came back to our group and told us that they would try to think of a solution. As we were 100 metres away, I started walking towards them.

«Stephanie? What are you doing? We do not yet know if we are allowed to go this way.»

My dear, really-too-kind-madam, the most respectfully in the world: I don’t give a fuck, shit, damn, care, I am going through this path.

«Yes, but it may not be safe.»
«They are walking there? I will also walk there.»

Just to make sure we are on the same page, there is no scenario where the group of handicapped walkers we were forming was going to walk back the three kilometres we had just covered, in the rain and the wind. There would have very likely  been wounded people. For my part, I would have been able to do it, but I would have paid greatly for it during the next two days (and for some reason I was not feeling like doing that). So, it was just not an option that they deny me passage.

I did not even talk to them. I simply walked in their direction with a determined step, keeping my head high. Between the moment I started walking towards them and the one I arrived, they had strangely had time to figure out a solution and they were busy cutting the metal fence they had just put up. I smiled at them and wished them a great weekend. Never would I have challenged a form of «authority» so shamelessly before I was sick. But now, when you stand between my health and I, I will always prioritize my immediate physical integrity no matter who is the person who is trying to harm me. I find it ridiculous that it takes this kind of  I-don’t-give-a-shit attitude for people to respect you.

Well, what is the problem? Are you seriously complaining, they opened the passage or not?
Really? It is true that I often notice what is not working well and it always bothers me until I find a solution. Let us put things in perspective anyway. What was the employee’s first reflex? « Go around » Yes, but we’re handicapped « yeah but there’s work here so you were not allowed to go this way. » OK but it was not indicated …

Why do we live in a society where it is acceptable that the first reflex of someone is to tell people who, he must suspect, are handicapped, that they must go around. To what extent do we raise our children centred on their own belly so that we have reached this point as a society? I say raising our children like that because naturally, children are the ones who had the most human behaviour towards me when I was in a wheelchair. Not only do they not avoid our gaze, they do not hesitate to ask us questions when they have them. If everyone did so, people with a degenerative disease might be the victim of less prejudiced (such as we are not contributing to society).

Well, you generalize, there are plenty of people who are empathic towards the most vulnerable. Yes, it is absolutely true that there are, I often come across them and I notice it, but today I am in a bad mood so I complain. I would ask a question to the reader who had a similar reflection. Are you the type to say that « people drive poorly » in general? Yet drivers who do not make dangerous maneuvers are not noticed. We notice the one who let us through and even more the one who scared us because he cut us off. You see the parallel? The famous law of 10-10-80. Most people are completely indifferent (80%), some take concrete actions to help people with disabilities (10%) and others publicly display their ignorance as this employee did (10%).

Our individual reflex should always be to help the most vulnerable and not just in appearance to comply with a law, but because it is the right thing to do, quite simply. We are so preoccupied with what we have to do that we do not take the time to live in the present time. My mother-in-law is a school brigadier, she told me that some parents come close to crushing other children with their car by driving theirs to school because they are in such a hurry.

I find it difficult that it is the norm that 80% of people are indifferent if they are not personally affected. I get it though; I would not be getting angry about this if I did not have multiple sclerosis. It’s just human as a reflex, I imagine. It makes me sad that we are like that, humans. At the same time, there is so much misery and suffering in the world, it would be unimaginable to absorb all this emotion. Perhaps selfishness is a way to preserve one’s happiness. If so, can we blame the entire universe?

Perhaps the feeling of being a prisoner of a society indifferent to ourselves, we create it by wearing dark glasses to see the world. If we choose to wear our pink glasses, we can change our perception and choose to see that a society is simply a group of individuals who are living life and simply trying to be happy.



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