Life as a Mosaic of Change : Inclusion

Written by: Jelena Milošević (Social Inclusion Blog)

It is human nature to seek change, but also to fear it. The potential for failure, insecurities, impatience, uncertainty and the unknown results of change, as well as the question of how much better we will actually be, all lead to exhaustion and put our self-confidence on a see-saw.

This is how everyone feels. Persons with disabilities bear an additional burden. In theory, we should all have equal opportunities. It is an actual fact that we do not.

For example, the desire to move away from a person that in any way makes our life more difficult and complicated. Although it is not at all easy, if they find enough strength, a person without a disability certainly has greater changes of finding a job and renting some kind of living space, or at least, find a temporary residence.

For persons with disabilities, this is unimaginable. First of all, many of them cannot work due to health reasons, or because they are underqualified. Even if they can, employer prejudice persists, and the choice of work is narrow.

Then, persons with disabilities cannot live anywhere. They need an adapted space, appropriate access to the building, a wide-enough elevator, wide doors so they can enter if they use a wheelchair, appropriate bed, adapted bathroom. It is often forgotten, even though it is of essential importance, that they require assistance, some for 24 hours, starting from being lifted and moved from the bed into the chair and vice versa, through clothing, morning and evening toiletries, to handing over water, food, and everything else, including leaving the house when necessary.

Thus, in addition to the basic expenses faced by every citizen of our country, a person with disabilities has additional ones that are not optional.

I am one of those people who find it hard to opt for change. I envy those who bravely change their hair colour or hairdo, because once I get used to something, even if it is just my coffee cup, I do not change it until it breaks.

I am like that with small things. However, with larger issues I make decisions more easily.

Persons with disabilities often face unavoidable changes imposed onto their lives. Just as everyone else, I also sometimes have no choice, especially since I am a person with an extremely rare disease (Fibrodysplasia Ossificans Progressiva – FOP). Such was the moment when, due to disability, I started using a wheelchair. I just knew that this was how it has to be, that the wheelchair is my entrance into the world, and that was enough. I do not remember the first time I sat in one at all. I just accepted it as part of my life.

There are also changes that are also the consequence of FOP, but at least I have some measure of choice. One of those was when in 2002 my jaw got completely stuck. FOP is a disease where every physical trauma can cause additional complications, so operations cannot change anything, including a stuck jaw. There was a huge problem with eating, even mashed food, and I experienced rapid weight loss. My doctor, living and working in Philadelphia, proposed that I remove a few of my back teeth, thus opening a bit of space. At first, I disliked the idea for aesthetic reasons, but the next moment, I accepted. I knew the risks of this kind of intervention for people with my diagnosis, mainly due to general anaesthesia. It was undertaken in Philadelphia with serious preparation, and I returned home happy for having made this decision.

It is also good to occasionally make changes for our own pleasure. For me, this was enrolling in master studies. This was made easier by the fact that I live in Belgrade. However, due to the nature of disability, the 7 km one-way trek to the faculty and the same trek back, organising and paying transport with a specially adapted van, attending classes, all with the assistance of my mother, since I did not have the right to a personal assistant then, none of it was simple. But it was worth it. I discovered a different world, met interesting people, had a new experience and spent one of the most beautiful periods of my life.

Half a decade later, corona has introduced many changes in all our lives. In addition to universal ones, such as masks, self-isolation, or vaccination, persons with disabilities face many others.

Mainly, maintaining social distance is impossible since we constantly require the assistance of other persons. When everyone in the house was infected by COVID-19, the situation became hectic since my parents could no longer lift me as they did until then. In brief, I could not meet my basic needs without a personal assistant, and I did not have one at the time. My father ended up in a hospital, and even when he got out, it was clear that he would no longer be able to do it, and I would have to employ someone permanently.

I knew specifically the type of assistance I needed, and based on this I have composed an ad that was circulated on social networks. All my friends, associates and acquaintances joined in. After many complications, trials, changing several assistants, I realised they have become, now and forever, part of my life and that in the new situation I, in fact, feel much better than for years back.

For a long time it was clear to me that this day would come and that because of his age and additional problems my father was having increasing difficulties in lifting me. However, I was not brave enough to make the decision myself. I was paralysed by the fear of whether another person would be able to do this right.

All of us living with disabilities know how often we want something, but it is impossible due to numerous reasons. We depend a lot on our environment and circumstances we would not have to think about if we did not have the disability. Encouragements such as “think positive” or “breathe deep” can calm a person down for a moment, but will not solve the problem. Much more is needed. I would not have been able to do any of the above without incredible efforts by my mother.

Life itself is change. However, even when we don’t feel good in our own skin, we often delay change and hesitate. Sometimes the puzzle just solves itself, sometimes the moment is not right, perhaps we lack energy, patience, sometimes we have a choice, sometimes we do not, sometimes we’re unsuccessful, sometimes we are. Whatever they are, changes require readiness, planning, thinking through, re-examination, support. It is important to agree with ourselves and develop tolerance to change to be able to handle the transformation it brings, without disturbing our psychological balance too much. However our mission ends, it is important to bear in mind: “Change is the only thing we cannot change” (Schopenhauer).

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The text “Life as a mosaic of change” was originally published on the Social Inclusion Blog. Other blog posts by Jelena Milošević can be found here.

If you wish to read posts by other authors on the Social Inclusion Blog, click the following link.