Today is World Down Syndrome Day: the people involved are much less different from you or me than you might think!
Four years ago, babies with Down syndrome appeared on the packaging of one of the biggest diaper manufacturers: many might not have even noticed the change when I was just buying the plus for two kids, I saw it as a heart-warming gesture that charming Down dolls were like any other little thing. also, put it on the packaging. It was around this time that Dóra Szinetár and Zalán Makranczi, a little son with Down syndrome, were born. The honesty of the actor couple and the diaper maker’s decision help the inclusion – but there’s still a long way to go for people with Down syndrome to live with us.
This is associated with Down syndrome
Every six hundredth child in the world is born with Down syndrome: the syndrome described by the English doctor Langdon Down has been known for more than 150 years. Due to the erroneous division of chromosome 21, there are three chromosomes instead of two in all cells of people with Down syndrome. As a result, they are characterized by above-average body size, slender muscles, loose joints, short limbs, a characteristic face, and slow intellectual development. It is equally true for most of them that they are warm-hearted, sensitive, and honest people who used to live shorter lives because their chronic illnesses remained untreated. Today, the average age of healthy people with Down syndrome is just a few years below average.
Locked up, behind bars of prejudice
To this day, the affected families face a wall of prejudice – dr. According to Katalin Gruiz, president of the Down Foundation, the root of this is that children born with Down syndrome are no longer integrated into the kindergarten system, and most of them live their lives in mass institutions that are cut off from the outside world.
“Children with non-Down syndrome grow up without encountering disabled, disabled children. Those who know a child or adult with Down syndrome – like friends or siblings – don’t have a problem with this, they treat them the same as anyone else, but most children don’t experience this type of diversity, the country is so aloof from integration, ”he says. el dr. Katalin Gruiz to the Sofa.
HE FEELS THE INSTITUTIONS ARE AFRAID BECAUSE THEY THINK CHILDREN WITH DOWN SYNDROME NEED TO BE PROVIDED WITH SPECIAL THINGS, EVEN THOUGH IT WOULD ONLY TAKE SENSIBLE ADAPTATION FOR A CHILD WHO IS DEVELOPING A LITTLE SLOWER TO BECOME PART OF THE KINDERGARTEN OR SCHOOL COMMUNITY.
“This is hard to explain to someone who has never been close to a person with Down syndrome. Yet there are those among them who still have a place in the open labor market as adults, even though they have to pay for pay there. But even that can be solved! ” Says the president of the foundation, adding that in hospitality, for example, there are plenty of time-consuming subtasks that workers with Down syndrome are happy to do.
We get scared because we don’t know them
Many people with Down syndrome shy away from not knowing how to communicate or behave with them or what to expect from them. Elsewhere, it’s hard to explain cases like what happened to a couple who sat in a cafe, but the waiter didn’t go there to serve them. Rejection and distant behavior are also common in offices or doctors, and often I would rather discuss a case of illness with Down syndrome with an attendant.
“MENTAL ACCESSIBILITY WOULD BE NEEDED: LET PEOPLE LEARN TO COMMUNICATE WITH THEM AND BREAK DOWN THE BARRIERS IN THEIR HEADS”
– says the President, who said that fortunately these barriers are being lifted for some personal services: if a lady with Down syndrome goes to a hairdresser, it is clear that she is cutting her hair, and the hairdresser recognizes at work that she has the same needs as anyone else. “The average audience isn’t that much different from them: they’re like beginners,” added dr. Gruiz Katalin.
We start working on our own
We need to start breaking down prejudices within ourselves: the president says the parent with the best chance of raising a well-integrated child with Down syndrome who accepts this situation 100 percent, who does not view his child as a tragedy, but always looks at opportunities. “Unfortunately, there are still outdated and unacceptable models that a parent is at fault for what they can do about a child’s congenital anomaly.. And it can happen to anyone. Parents share amazing stories, such as a mother snatching her cheese next to a child with Down’s syndrome who is peacefully sandblasting on the playground, planting fear, resentment, and grounding in rejection in her child, even if the young children don’t even notice the difference. ” said the President.
A little one is sure to see Down babies differently than an adult: my daughter, when she saw her mom carrying her Downs baby, called my attention so much, “Look, Mom, the baby is on Mom’s back!” – That was the alert for him.
A more livable world for everyone
Attitudes towards Down syndrome are not based in the sandbox either, but much earlier, in the gynecological office or genetic counseling, where pregnant women are diagnosed. Dr. Katalin Gruiz emphasized that Hungary had also ratified the UN Convention on the Rights of Persons with Disabilities, according to which their right to life is unquestionable. However, it is quite different for a mother to become pregnant if it is evident to her doctor that a fetus with Down syndrome should be weaned. This is possible in Hungary up to 24 weeks of pregnancy.
“They are deeply rooted in our culture to get rid of that burden.
YET IT IS NOT POSSIBLE TO GET RID OF BURDENS, IT IS BEST NOT TO CONSIDER THEM AS A BURDEN, BUT AS A NATURAL PART OF LIFE. WE HAVE SUCH “BURDENS” ON US AT EVERY STAGE OF OUR LIVES. A BABY, AN ELDERLY PERSON, A SICK FAMILY MEMBER NEEDS HELP, AND IT IS NATURAL THAT THERE IS A NEED TO HELP THE OTHER PERSON.
People with Down syndrome need a lot of help for most of their lives, ”says Dr. Gruiz Katalin. In his opinion, the young adult is a really critical period for those involved: many people disappear forever in an institution, even though they would be able to thrive in life with their help.
“They need help, but in a safe, well-used environment, with lovable services, they would thrive on far less help. I am not thinking of pity or pinker-than-life circumstances, but of a reliable environment, a service-minded, patient service provider, an easy-to-understand administration, a world that would be good for everyone and in which they would have a good time. What they may feel is what they can become a part of. Uncertainty is not inclusive, a bad environment is not inclusive, disgusting, impatient administration is not inclusive, ”says the President. In such a lovable world, not only would people with Down syndrome find their place more easily, but in fact, we all would.