On October 22nd, 2019, I began this article and gave it this title. At that time, we were not in the midst of a pandemic and only a minority were living in confinement. I don’t know what would have been the continuation of the article started that day, but at the beginning of it, I said that I wanted to take a break to appreciate how far I had come thanks to those around me. I also said that it is difficult to move forward alone, and when you live in a situation of disability, it is even more complicated. I wrote that there before continuing this one, I thank my encouraging friends, my family, and my sister, in particular, she is not my only sister (but she will recognize herself) to whom I may not show my gratitude enough.  It is still this way I wish to begin today’s article.

Since October 22nd, 2019, a lot has happened… and now, most of us are in the midst of social distancing, to protect each other.  Everyone does it for different reasons but the result can only be positive.

This period allows us to discover the social inequalities that exist, for example, not everyone can afford to order their groceries or meals online. We also discover how isolated some of us are. I was surprised to see how quickly fun activities were set up. For years, because of the lack of accessibility of public places, women, men and children with disabilities were isolated, bored, ignored! It took only a week after the start of the confinement for solutions to be found to combat the boredom experienced by the majority. I was also pleasantly surprised to see various platforms of mutual aid appear. Do we need emergencies to solve existing problems?  Isn’t the aging of the population urgent enough to think about long-term social life by adapting our Belgian cities and towns so that everyone can feel welcomed?

Between the 21st March, and 22nd April I didn’t leave my house. I only did because I had to resume my physiotherapy sessions, and I must confess that the fact that I haven’t been out of my house for so long doesn’t change much in my life. Because of the lack of accessibility of public places. In general, I work from home, outings with friends are complicated to organize, we lose so much energy thinking about finding accessible places, that we end up not seeing each other anymore.  When it comes to romantic relationships, meeting people or being in a relationship it’s complicated when the desire to meet people and the desire of your friends to introduce you to people is not enough, because there are only a few places that you have physical access to. So almost a year ago, (I’m a lover of love), I decided to draw a line through this issue. I put that energy into something else.  What was I talking about again?  Oh, yes!  Confinement makes me useless in my household (division of tasks in the family) but does not impoverish my social life any more.

I have a sister, and we live together right now.  I’m lucky to have her in my life… I’m glad I’ve been aware of it long enough. I would have been ashamed to realize it until this confinement. On the other hand, it reveals that everything falls on her when the system usually in place for my independence and the balance of our lives, collapses. I will explain more clearly…

In Belgium, some people with a disability, who make a (justified) request, to have the privilege of Personal Assistants. I have been one of these privileged people for 3 years. A certain budget (Personal Assistance Budget) is, therefore « reserved » for me, thanks to this, I can hire people who assist me by doing some of the things I could have done if I walked.  On the French side, the person with a disability first calls on personal assistance services, makes the payments, and then is reimbursed in full or in part on the basis of invoices (and proof of payment). When the decision was made to confine, most of the services that can be used for personal assistance had to close down and in these cases, its the family of the person with disabilities that their lives are based on this burden fall upon. Not everyone has good family relationships, so it is a delicate situation. On top of that, this situation of confinement, which we are going through, is psychologically disturbing for most human beings, because it involves certain changes in the way we function. We make sure that we protect our loved ones and protect ourselves, shopping takes more time than before, we are afraid of the virus, we keep away from those who do not live under the same roof as us, but whom we love.  When you add to all this the fact of replacing personal assistance with a loved one with a disability, it can be a source of considerable stress.

Also in Belgium, other people with disabilities do not have access to this Personal Assistance Budget, because they do not « meet the criteria » necessary to have access to it.  From what I understand, one of these criteria is the fact that they have one or more activities that justify the use of Personal Assistants or that the family has difficulty getting by, without any other support than that of home nurses. At what point can the family consider that it is difficult to cope?  How can one have activities, whether recreational or professional, if the city in which one lives is not accessible?  Some people have therefore not waited for the period of confinement to depend on or take care of relatives with whom they do not necessarily have a good relationship.  For these people, I don’t think this confinement situation brings much change to their lives.

So, 365 days a year, some humans are confined most of the time because they are excluded from most public places in their Belgian cities and towns.  When we are free to go out, when the confinement is behind us, I hope that those who are experiencing isolation, for the first time, will remember how they feel today, during this period of social distancing, and will think about getting involved in making our cities and towns accessible.  If we do not do so, one day it will not be a pandemic that will bring us back to isolation, but old age, because often with it, comes a decline in our physical capacities and our cities are not ready to allow everyone to live freely.

All of us, each at our own level, denounce the fact that our cities are inaccessible and exclude some of us, then act by collaborating with these excluded people and/or their families, the day will come when, in one way or another, we will be able to appreciate the changes in which we have participated.

As usual, take care of yourself and your loved ones,

Petit Cyborg

Traduit par G. F.