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15 Myths About "Special" Children

What are the myths that compel the parents of special children to put them in an institution, and discourage potential adoptive parents from adoption?

Author: Svetlana Shtarkova, translated by Izabella Balakirsky, www.mydears.ru Published: 2013-02-20 11-30-00 Viewed, times: 1850
  
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Photo: domashniy.ru

Humans are inquisitive from birth. A baby grows and develops by studying the surrounding environment and learning from it. Our entire life is built on the basis of accumulated knowledge and experience. But what happens when we encounter something new, something about which we cannot obtain accurate information? We attempt to make up our explanations, based on our own beliefs about the world, piecemeal knowledge, others' opinions...That's how myths arise. Some of them are harmless, some are amusing, but there are also myths that are harmful because they create negative attitudes, fear, neglect or cause discrimination or even extremism.

For example, the myths about disabled children. As one "journalist" wrote, "the vast majority of normal people place such children in an institution." Indeed, 80 percent of such parents in Russia do just that. But are they "normal"? More likely, they are misinformed and influenced by these myths... According to the specialists from the Downside Up" organization ", after being educated, the parents often take their children with Down syndrome back home from the orphanage. And there are also adoptive parents, who take into their families children "with special needs", which, in simple terms, means the presence of serious or incurable illnesses.

So what are those myths that compel the parents of special children to put them in institutions, and that discourage potential adoptive parents?

Myth #1
"More than 90% of disabled children are children of alcoholics and drug addicts, but I am healthy and I would never give birth to a disabled child"

There is no available data that demonstrate such a pattern. In 60-80% of cases, childhood disabilities are caused by something that happens during pregnancy. At this time, there appears to be a tendency for an increase in the number of children with cerebral palsy, hearing loss, and congenital eye disorders. Other factors that contribute to the incidence of disabilities in children are contaminated environment, unfavourable work conditions for men and women, higher incidence of trauma, insufficient opportunities and insufficient motivation for a healthy way of life, parents' poor health, unhealthy diet, poor-quality drinking water; thus, it is a wide range of problems which stem from the low standard of living for a significant number of families.

Parents' health is an important factor but not the only deciding factor. There are also de novo mutations and medical errors, which cannot be foreseen or prevented.

The proportion of disabled individuals always stays at about 5% of the world population. And that means, that every person, regardless of their age, health, ethnicity, faith, social and financial status, has a 5% chance to become a parent of a disabled child. One can and should do everything possible to ensure the health of one's children, but it is incorrect to assume that everyone who has given birth to disabled children is personally at fault for that.

Where did this myth come from? Do you remember the propaganda during the existence of USSR: "the Soviet citizens are the happiest, the healthiest, and the best-looking"? Everybody who didn't meet these criteria was hidden out of sight. For example, when the Olympic Games were held in Moscow in 1980, all criminal elements...and all the disabled individuals were moved out of Moscow for the duration. Thus, they were considered equivalent.


Myth #2
"Prenatal diagnostics can find the congenital defects of the fetus in the early stages of pregnancy"

Modern prenatal diagnostic methods in the early stages of pregnancy (at 12 weeks) offer only a calculation of risk (screening). This calculation depends on too many factors (including ethnicity) to give a definite prediction. Invasive diagnostics, which gives a definite answer rather than a prognosis, is done later in the pregnancy, most often after 18 weeks, and is done only if screening had shown a high risk, because these invasive methods have a 2% risk of miscarriage. But even invasive diagnostic methods are wrong in up to 2% of the cases, and also, they don't diagnose all of the possible congenital disorders. For example, mental retardation, cerebral palsy, or psychiatric illnesses cannot be diagnosed using these methods.

Myth #3
"If one starts medical treatment for the child as soon as the child is born, and continues it diligently, then the child can be cured, one must only work 'with all one's might'"

Even given all the accomplishments of modern medicine, there are still many disorders that cannot be cured, no matter how much effort or how much money one is willing to expend. Additionally, children with the exact same diagnosis can respond very differently to the same treatment. The causes are unknown: the brain is the least-studied organ so far. Therefore, if you see a severely disabled child, that doesn't mean that his parents didn't attempt to get him medical help.

Myth #4
"Disabled children are always in pain or are suffering"

Most disorders leading to disability don't cause serious physical pain and suffering. Even if there is pain, modern pharmacology can relieve practically any pain. However, if we are talking about the psychological discomfort caused by the illness that has two aspects: some disabled children are not aware of their "special circumstances" because of the illness itself, and the psychological comfort of other children, who are self-aware, fully and entirely depends upon their environment. It is well-known, if one is always called a pig, s/he will start drinking. And if someone is constantly reminded of their "inferiority", that's how that person will consider him/herself, inferior.

Myth #5
"Disabled children are a heavy burden on taxpayers, and lack for nothing as a result"

There are 575,100 disabled children currently living in Russia. Their financial needs are indeed taken care of from the country's budget. But they can hardly be called its heaviest burden.

These are also paid out of the state budget:

The Federal Security Service, Federal Information Agency, and other associated government agencies - total 2,140,000 persons
The officials and staff of all the levels of the government--total 1,870,000 persons
The unemployed--total 9,190,000 persons
And some others; adding all of these numbers together results in a total of 101,965,000 persons.

One also mustn't forget that the disabled children also have parents and other relatives who also pay taxes.

Statisticians in the USA calculated that every dollar invested in a disabled individual brings $25 in revenue (because of the people employed in the system of rehabilitation and work placement for disabled individuals and their relatives). In Switzerland, the disabled children don't receive any financial assistance as such, because the state does everything to ensure that the everyday life of families with disabled children would be no different from the everyday life of other families--the parents are able to work and lead normal lives, while children receive the necessary assistance, education, are able to attend daycare and school with their peers, etc.

In Russia, a disabled child and a non-working adult taking care of the child receive 6,324 rubles (approximately 208 US dollars) per month for the two of them. In most cases, one parent has to quit working. There are practically no daycare centers or schools that will accept such children. Even those disabled individuals who are able to work are usually unable to find employment. The majority of the benefits they are supposed to receive (medications, medical treatment, rehabilitation, and so on) are only valid on paper but as a matter of fact, one cannot obtain them. The vast majority of disabled children, just like any children, live on their parents' income.

Myth #6
"Having disabled children is a punishment for one's sins"

The Old Testament principle of "an eye for an eye" was discredited when Christ came into this world. "As he went along, he saw a man blind from birth. His disciples asked him, УRabbi, who sinned, this man or his parents, that he was born blind?Ф УNeither this man nor his parents sinned,Ф said Jesus, Уbut this happened so that the works of God might be displayed in him"" (John 9: 1-7).

"It is clear that God is not to blame for our troubles - we ourselves have made our world such that it is difficult to give birth to healthy children. Because we don't follow God's instructions on how to preserve this world He entrusted us with, it is hardly surprising that this world becomes less and less habitable. (...) And since we stopped listening to the voice of reason and of our conscience, the Lord sends us his prophets from among 'these little ones', his children who are free from sin. (...) Thus, taking care of those who are disabled, we are essentially taking care of ourselves. The societies which get rid of 'monsters', become societies of 'immoral monsters'. We are justified in speaking about 'specially chosen service' the disabled individuals provide - service equal to the mission of Christ, about their being special ambassadors in our world, their being apostles, that is the burden placed on their frail shoulders" (from "The Differently-abled Apostles" by a priest Peter Kolomeitsev)

Myth #7
"The families of disabled children are unhappy"

Certainly, the life of families with disabled children in the Russian Federation is plagued by many problems and difficulties. But such problems, to a greater or lesser extent, plague everyone, not only those who are disabled; therefore, it is a mistake to claim that disability is the only reason for unhappiness. Happiness, in general, is an abstract and relative concept. Every person has his/her own understanding of what happiness or unhappiness is. Happiness is a state of mind, and it is not dependent on any specific things or conditions. For instance, one cannot say that having a Mercedes car is a 100% guarantee of happiness for any given person.

One cannot evaluate someone else's happiness according to one's own criteria, or by presence or absence of something. If you want to know whether someone is happy - don't guess, just ask him or her.

Happiness is not determined only by having material possessions. How often we hear or read about someone who's wealthy, and yet desperately unhappy? If one were to sum it all up, the final goal of anyone is love, which is a spiritual phenomenon - and, as it is well known, it cannot be bought, nor does it care what colour your skin is or what illnesses or disabilities you have. So it would be fair to say that the happy person is one who loves and is loved.

Certainly, everyday problems of families with a disabled child in our country are quite serious, and the overall intolerant attitude of our society only exacerbates the situation. But if these two factors were removed (and that is possible, because other countries have done so), then the life of a family with a disabled child would become the life of an ordinary family with a child.

Myth #8
"Life of disabled individuals is meaningless"

This myth stems from the two preceding myths. A person who denies the spiritual aspect of our lives cannot comprehend and understand the higher calling of the disabled individuals, their apostolic role, their importance for society as a whole.

But even based on the materialistic theory of the world, we can speak about the unconditional meaning of their lives; one must simply recall "the butterfly effect": an insignificant influence on a system can have major and unpredictable consequences at another time and place. Everything has meaning, nothing happens randomly.

Myth #9
"A disabled person is inferior: he cannot study like everyone else does, live like everyone else does, or feel like everyone else does"

The key phrase here is "like everyone else". The fact is, we are all born different, and nobody knows the full extent of his abilities. The system tries to get us within certain boundaries--why is that? Because an average person is easier to govern. Sameness is a guarantee of stagnation with subsequent degradation. Growth and development, on the other hand, depend on variety.

If we start discussing the inferiority of disabled individuals, we then segue into discussing the value of human life in general, which would lead to a conclusion that not all healthy people are equally valuable. The result would be the same ideology that existed in Europe in the 1930s. History has already proven that such theories lead to an impasse.

Different, but equal. Equal in rights, in feelings, in desires. If we take as the starting point not the sameness but the multiple variations, then it turns out that the disabled children are quite teachable, simply with a different curriculum, that they can accomplish a great deal and to lead active lives--as long as they have the help they need. And the area of feelings is accessible to everyone - one must simply be able to see that, because demonstrations of feelings can also be manifold.

Myth #10
"The disabled individuals are contagious"

Disability in itself is not an illness, let alone a contagious one. Disability is a status which is given to a person who is limited in one or more of the following functions:

Movement
Circulation, breathing, digestion, elimination, metabolism, endocrine
Sensory (vision, hearing, olfaction, touch)
Psychiatric (perception, attention, memory, cognition, speech, emotions, will)

Myth #11
"The disabled individuals spoil the gene pool"

Only genetic diseases are passed on to the children. Cerebral palsy, for example, is not a genetic disease, and, therefore, parents with cerebral palsy wouldn't have children with cerebral palsy. Those who do have genetic diseases are often infertile because of those diseases. People with serious mental problems often simply have no drive to have offspring. Others, living the life of disabled individuals, don't want such a fate for their children. Therefore, as we already discussed earlier in this article, the proportion of disabled individuals in the population remains constant, and those who are concerned about the genetic pool can rest easy: those disabled individuals who are already living are certainly no threat to the gene pool.

Myth #12
"If the disabled children attend a regular school, the healthy children will regress"

Inclusive education doesn't include lowering the standards for healthy children so as to "equalize" them with the special-needs children. Inclusive education, most importantly, stresses personalizing the education process, which is important for all children, and not only for disabled ones.

In addition, presence of special-needs children in the classroom will allow the healthy children to acquire priceless knowledge about kindness, tolerance, patience, helpfulness that no book and not even the best teacher can otherwise teach.

Myth #13
"It is impossible to integrate the disabled individuals into the society, no matter what, they are still DIFFERENT"

This mistaken conclusion is made because we are still at the very beginning of the way to integration, and for us as we are today it is naturally difficult to accept the disabled individuals as equals - we don't know much about them, we don't see them often, they are "unusual" to us. That is a natural human reaction. In the same way, we'd have been afraid of a dachshund if we had never seen a dog in our lives. We will change with time. Many other countries have done so before us. A mere 15 years ago in the USA - which is now practically an exemplary country in this respect, things weren't much better than they are for us now. As the saying goes, a journey of a thousand miles begins with a single step.

Myth #14
"All the disabled individuals are crazy, and all the crazy ones are mentally retarded"

In everyday speech, we call someone "crazy" if they don't behave in the usual manner. However, when this word is applied to a special-needs individual, many use it to mean an actual psychiatric diagnosis, as in, if a person is ill, they have a mental illness too.

The number of individuals with mental illness in the Russian Federation who are registered with healthcare facilities in 2007 was 703.2 thousand people among children from 0 to 14 years of age and 273.5 thousand people among teens of 15 to 17 years of age. These numbers constitute 16.5% and 6.5% respectively of the total number of people with mental illness (people overall, not just the disabled individuals). Among the overall illness statistics, mental illness constitutes only about 3%.

Mental retardation was recorded in 16.4% individuals with mental illness in childhood and in 22.9% of individuals in the teens.

Myth #15
"They are not disabled! They are simply not brought up properly/indigo children/unrecognized geniuses"

Unfortunately, medicine in general, and in our country in particular, is not perfect. Nonetheless, if more than one physician diagnosed the child with a serious illness, they are to be believed. It is understandable that denial is the first step to acceptance, but one shouldn't get stuck in the denial stage. Yes, a child with autism, schizophrenia, or some other mental disorders might look normal, behave just like any other child, and to have normal or even high IQ. Despite that, any illness requires careful monitoring and proper treatment, not only love and care, but medications and special teaching.

This myth, unfortunately, is a common one not only among people in general, but even among the mothers of special-needs children. Those mothers are also a part of society, and as such, just like many people, they imagine special-needs individuals to be something like aliens--they necessarily have to be "unlike everyone else".

* * *

In other countries, it is very uncommon to abandon a child in general and a sick or disabled child in particular. And even if parents left the child to be a ward of the state, he will be placed in foster care, regardless of whether he has an illness or a disability. Because every child deserves to have a family. In Russia, in 2008, 239 disabled children were adopted. Only 26 of them were adopted within the country, all others were adopted abroad.

Yes, it is common and even "normal" in our country to abandon a sick child, and not at all common to adopt one. Such exceptional people as the Klimenko couple from Primorye (they adopted 8 children, all of whom have health problems, and the younger 4 girls have Down syndrome) are looked at askance and even suspected of mercenary motives.

The main problem is perhaps that, as the already-mentioned "journalist" had written, that many people "have children for pleasure", that is, they are not ready to take on the responsibility, and in addition to that, they have mistaken ideas about the disabled children. Whereas these children are just like other children in that they need love and care. And in return, they give love and happiness. Moreover, they open to us a new, unknown, deep and rich spiritual world - absolutely all parents of disabled children mention that. They help us to personally grow and improve, to develop spiritually. They, like litmus paper, show us what the person interacting with them is actually like. They help us realize what is truly important and what is merely superficial and vanity of vanities.

Everyone knows how the adopted children flourish after adoption. And the special-needs children not only flourish, but actually get better, learn new skills and can often shed some of their diagnoses.

A year ago, I heard about a girl who was blind from birth and was placed in a boarding school with mentally retarded children. Kristina began to regress in that boarding school to the point that she stopped walking and became very aggressive. Her medical chart stated that she is mentally retarded and unteachable. Fortunately, volunteers noticed Kristina and were able to take her to Moscow. And there they found out that Kristina is perfectly able to walk, and talk, and even to recite poems by heart. Now Kristina is living in a boarding school near Moscow and hoping that one day, a mom and dad will come to take her home.





This publication related with such categories:
     Articles about children with special needs        Publication from mass-media and TV    



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