Beyond the physical barriers that remain – even if they have been decreasing for several years already – there remains the invisible and sometimes insurmountable gap of preconceptions about disability, chronic disease and their limits. Several times, people have been surprised that I can travel alone, in a wheelchair. As if such a thing was inconceivable. It’s a lot of work to raise awareness and inform others of our real limitations, but above all of how we overcome them in other ways.
Welcoming others into the normality of disability
Talking about our disability, answering the questions it raises, showing and explaining. To make others understand what remains possible despite everything, despite the visible limits. Often much more than they think, given all that they deem as unattainable for us. They like to put people with disabilities in a box, in a little box, and say:
– “No, you can’t do that, because you have such and such limitations.”
This is often well-intentioned, rarely malicious on the part of others. They cannot fully understand this normality that differs from their own. We refer to something or someone as “normal” if it fits into a commonly accepted standard. But what is normality if not one’s own reality? The standard we call ‘normality’ is linked to a personal experience of the world and thus comes to be defined by one’s subjective perception of the reality in which one is immersed. Standards of normality are also constructed over time and ‘normal’ can thus become synonymous with ‘usual’. I would say that it is “normal” for me not to be able to walk more than a hundred metres as a rule and to be in a wheelchair. But it is my individual ‘normality’ that has been built up over time and my experience of what was usual. Even though I am well aware that my normality is not someone else’s. In any case, on certain points.
This is also the reason why others often see my normality as being much more restricted than it really is. I understand this to a certain extent, because at first sight, you think that someone with a disability or a chronic disease has much more defined limits, much closer to those of someone who has no disease or disability. Which is not wrong.
But what others don’t always understand is that, if you don’t overcome the limits head on, you learn to get around them. This means not only going beyond them, but also discovering new paths that one did not know existed. We understand that the question is the goal we want to achieve, not the means. When you are disabled or have a chronic disease, the means is often different from what an “able-bodied” person would have done. For example, I will go by car or taxi where someone else would have gone by public transport. But in the end, I achieve the same goal. For me, it’s important that others understand that almost anything is possible. Just differently.
Explaining to others the reality of one’s disability or chronic disease is to invite them to see the world through our eyes and our limits. Limits that are ultimately further away than they might have initially thought. We invite them to enter our normality, that of our personal experience of the world, defined by the subjective perception we have of the reality in which we are. A different normality, which is also ours.
Showing also the negative sides of the disability
But, while presenting all that I can achieve despite my disability, I don’t want to fall into the opposite excess, which would consist in minimizing the obstacles or pretending that they don’t exist. Because then others don’t see them. And that’s worse than when they made a big deal of it.
So, it’s a question of telling them about and showing them the obstacles, but at the same time telling them how you have learned to overcome them. I regularly explain that I don’t like networking events where everyone is standing up while I’m in a wheelchair: the cocktail tables are at face level, I have to bend my neck to hear what people are saying, and they can’t help but look down on me. So, I often invite one or two of them to come and sit next to me when there are seats available. This is not to remove the obstacle, just to get around it.
Over the years I have also learned not to answer the question “How are you?” all the time with “I’m fine, thanks”. Especially when it is not true. Talking about a chronic disease or a disability also means taking on the more difficult moments, those of fatigue, physical weakness, and sometimes moral discouragement, those that we are less willing to show because they remind us of a part of our reality that we would sometimes like to forget. However, these moments are also part of our normality. Over time, I have learned to say “this is normal for me, I’m used to it” because in my experience, not being able to walk for a long time or having a period of greater physical weakness is normal. Even if it is far from being normal for most people.
It is also because this normality differs from theirs that when we talk about the disease or the disability with its obstacles, there are sometimes those people who are in blissful admiration:
– “Bravo! How brave you are!”
And if this makes you happy at the time, it does not prevent you from saying that, of course, you have your difficulties, but who doesn’t have some and doesn’t receive recognition for overcoming them? This kind of compliment sometimes makes me feel uncomfortable because it sets me apart again.
This whole exercise of talking about the disease and the disability, of presenting it, is precisely about inviting others into our world, into our reality. So that this invisible separation that sometimes seems to appear when I go somewhere in a wheelchair disappears. So that no one looks at us like an alien, with a slightly pitying look on our sad fate. So that we never again have to justify and prove that we can do something when we say we can do it. So that others understand what we need to overcome our limitations, and above all, this invisible gap.
If you want to support and promote this blog, do not hesitate to buy one of my books: Un bac sous perfusion (available in paper format and as an e-book) or Wheelchair hop on hop off (also available in paper format and as an e-book).