Interview with Julia Shalkovskaya – Part Two

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Psychologist Yulia Shalkovskaya speaks on the peculiarities of working with families of patients with disabilities and gives advice to those who rarely encounter “people with inclusion.”

Yulia, how does the family affect the psychological state of clients with limited abilities?

The family, of course, holds great importance and exercises enormous influence over the patient. It all depends on when their abilities became limited: whether they were limited from birth or from a certain moment during the person’s life.

I would also point out that I don’t like the word “disability” and would rather talk about “activity limitation” because, for example, for the blind, their abilities are limited only by what they can’t see. Otherwise, it’s hard to call their activities limited, since, while this definitely affects a number of areas, we can hardly speak about a limitation of opportunities. We could also use the term “person with inclusion.”

What exactly is the difference between families where a child has limitations from birth and families where this didn’t happen right away?

If a person doesn’t see from birth, they don’t know what it means to see well or what good vision is. They get used to it, live their life normally, and so does their family. Yes, it can take the family a while to get used to this, they will go through various problems, worry about whether their relative will have to depend on them, but, in the end, everything will usually fall into place. At some point, every child needs their diapers to be changed, their noses to be wiped, their food given to them with a spoon, and they need to be taught how to walk long before they grow up enough to go to school, and so on. A blind child is special because their parents will know that, for example, their baby can’t see at all, so the family will learn how to help and adapt to this. In all other regards, the child will be an ordinary kid who, like all children, may not like semolina and spinach.

This adaptation will happen much easier and more natural than in a family where blindness becomes a factor at a later stage. A child with inclusion needs the same things as a normal kid: protection while they’re small, their mother’s warmth, attention to their needs, etc. The mother will hold the baby in her arms, feed it, stroke its head, dress it, and play with it like with any other normal child, so the kid will gradually learn to walk, to recognize their parents, and will then discover the world around them.

Cut in: A child with inclusion needs the same things as a normal child.

When the child grows up, and it’s time to go to school, things get more complicated. A child with inclusion can’t be sent to a regular school, simply because not all facilities prove inclusive enough. But even where they are, to tell you the truth, it’s things rarely work out fine. In some countries, inclusion isn’t very developed as a concept, and this creates many problems for the child and their parents.

Parents have to decide what to do, where to send their child to study, what will be the best for them, etc. A regular school with inclusivity options? A boarding or specialized school? This is a very important moment for all parents of children with disabilities.

And it’s also very important to support such a child. Parents should take the time to tell their kids when they’re doing great, that they’re good at solving math problems, or that they’re generally amazing at some other subjects.

Furthermore, such children do best with everything put into place like a well-worn track: they should select their higher education (college or university) in advance, pursue work in the chosen field, plan their life ahead.

A situation where a child starts to lose their sight and becomes blind at a later stage, after being born with the ability to see and with nothing foreshadowing such an outcome, is much more complicated. When a kid is perceived as a healthy person with an open ocean of possibilities in front of them, and then something like this happens, this puts the entire family into a state of crisis, and even worse – people perceive such a development as a tragedy.

The child’s entire life will now be divided into “before” and “after” the moment when they lost or began losing their sight. Such a situation require a tremendous amount of work with the kid and their family, especially since the former will remember the time when they had vision and might start perceiving themselves as being “incomplete.”

For example, a young girl could previously decide what to wear for herself: she’d easily put a red dress, matching shoes, and a blue bow on. Her only problem was not having a blue purse in her wardrobe, and that’s it. Now, however, she will need help with not only picking out the right colors and everything else, but also in figuring out whether the resulting outfit looks good and fits herself nicely.

Life essentially begins anew, and the patient has to learn to do everything by relying on their other senses, and this situation is never easy for anyone.

Cut: Life is essentially starting over, and it’s a difficult situation to be in.

In such situations you have to work with confidence, self-esteem, self-perception and perception of yourself and others. This work needs to be carried out both with the client and their family because they have to learn and teach their child as if he or she had just been born. It’s like learning to walk again, only even more difficult this time around. Any little thing matters here, even those that seemed insignificant before, like putting a cup on the table so that it doesn’t break.

If the family is strong and united, then the adaptation will come faster than if the family would constantly quarrel, separated by disagreements and the need to find out who is more to blame for what happened. Moreover, the latter situation can be most difficult for the one who lost their sight, and not for their relatives.

What else is important to know for the loved ones of someone who lost their vision at a later stage of their life?

When a psychologist begins working with a family where a person with inclusion has appeared, the grief work begins. What has happened is perceived as grief, nightmare, and horror. All of this baggage must be worked through, and this is were a psychologist comes in.

As is widely known, there are five stages of grief.

The first is denial. “No, it can’t be. Everything will change and my/their vision will get better again. Everything will return to the way it used to be.”

Then follows anger. “Why me? Why? Why are my arms/legs are gone or I can no longer see. Why am I, a regular person who has such good children, has to go through this? Why not my alcoholic and/or drug addicted neighbor?” And in such situations, you have to find an outlet to this anger and work through it.

The next stage is bargaining,and it’s very interesting. “All right! What happened is what happened. I can’t see, or I don’t have my legs anymore, but they do give me my very own place in public transit, and there are other benefits too!”

Stage four is depression. “No benefits are worth all this, nothing will ever change or get better ever again…” The psychologist begins to work with depression, both that of the client themselves and their loved ones. It’s very important to work through all this, so that everyone involved can go on with their lives.

Finally, the crowning stage is acceptance. The family accepts what has become of their son, daughter, mother, father, brother, or sister, and they all continue to love their member as they have before. It doesn’t matter that they can’t see or walk, they are still loved and begin to realize that they too can handle this grief.

Sure, it’s not a magical happy ending, but at least things do get easier. People begin to adapt and live normally with what happened, they stop constantly criticizing themselves. In short, they are a normal family with their own problems, just like any other family unit out there.

Yulia, one more extremely important question. How should people around the person with inclusion, and not just their family, behave when meeting them? What should you never do or say, and what behavior is acceptable?

Firstly, avoid emphasizing that a person can’t see or walk. They already know that, plus it’s simply offensive. It really is. Just because I can’t see, am I now forbidden to talk, fall in love, have family and children? Sometimes the question is asked about how someone who doesn’t see can get around at all. Well, the answer is that such people move about just like everyone else – with their legs. Left, right, left, right… And if they ever fall, they get back up the same as everybody else.

Do not attempt to “carry” such a person around like a crystal vase. It’s hurtful and unconstructive. Yes, it’s good to warn them that there’s a pit or a threshold a few steps ahead or to direct them to go around such obstacles, but don’t grab their hand and drag them aside. Just follow the person and prompt them to be careful. Don’t deprive them of their independence because, if they’re dragged around one too many times, they will simply not want to go anywhere, and especially not with you.

Do not deprive those with inclusion of their independence.