Changing the Cultural Perception of Down Syndrome - AFFIRMATIVE ACTION

For short movies of Jacob, a kid with Down Syndrome, go down this page a bit further.

If you were like me when you first got the news about your kid having Down Syndrome, it would mean that you were devastated by the news. Ask yourself this question, how much do you really know about Down Syndrome? If you are like most, your reaction will be heavily based on cultural perceptions of what people with Down Syndrome are like. Cultural perceptions, NOT factual perceptions. There are big differences between cultural perceptions of Down Syndrome and what Down Syndrome really is.

To give you an idea, if the chap up the road had a kid with Down Syndrome, in the old days that kid probably would have been segregated off into a special school that the community would have culturally perceieved as being for dumb people, therefore you would perceive that person with Down Syndrome as being dumb. If that person with Down Syndrome did something criminal, the perception of those who hear about it is often to perceive all people with Down Syndrome as having the criminal behaviours. One of the reason why cultural perceptions are so easily formed is because Down Syndrome only happens to 1 in 800 kids and in the past, all those 1 in 800 kids were never allowed to be part of the greater community, which meant that the cultural perceptions essentially were never corrected or changed, whether it be at the local, state or federal level.

To give you an idea of the cultural perceptions I'm talking about and how they affect people with Down Syndrome, let's have a look at my son in normal school. First, realise that the cultural perception of the school academia is that parent's of kids with Down Syndrome need to look at segregated types of special schooling, to make informed decisions about where their kid with Down Syndrome should be placed - all sorts of hidden agendas could be in play here, anything from funding issues to covert discrimination to just doing the right thing by giving options. However, ever heard of a 'normal' kid's parents being forcefully told they have to consider all options, including special schools. I don't think so. So the cultural perception, or misperception, is already present.

So, here's a bit more on the cultural perception of Down Syndrome:

Initially when the School principal suggested we look at all our options, including Jacob being placed in a special education facility, Carolyn and I thought that whether we liked the idea or not, the paramount question was " What was best for Jacob?" When we told Hannah, our daughter, that the school principal was suggesting that one of the options for Jacob that we needed as parents to consider, was placement in a special education facility, she burst into tears and went screaming out of the room. When we asked her why she reacted so, she said because it would separate them, that she wouldn't be able to see him in school anymore. Various other lines of questioning were explored, but this was the real big reason. I then phoned the Down Syndrome Association the next day and talked with a Dwon Syndrome worker about what was going to be best for Jacob. She asked what did we think and we said to remain in normal school and she then said she also agreed with that being the best for Jacob. So the professional Down Syndrome worker agreed with us, that Jacob's best interests were served through normal schooling. (SIDENOTE, research also confirms this at several levels).

This left me with Hannah's response. It was so powerful and strong and from the heart, that I knew I was missing something in all this that I shouldn't be. After thinking about it I realised she was reacting to segregation. At the moment Jacob is integrated into the normal school and seen as being a part of it. In special education it becomes a forced segregation, with no consideration given to the feelings of the kids concerned - Jacob and Hannah interact with each other almost every day. When a kid runs into Jacob or abuses him ( initially I felt this was not too often, but since placing Jacob into another school, I've had two other students from the old school raise the subject of Jacob being bullied in the old school - on one occassion, three students were upset over how the teachers punished Jacob, while letting the abuser go unpunished, because Jacob bit in retalliation to the abuse he was suffering.  No wonder Jacob ended up hating to go to that school) Hannah is often able to help him and give him comfort and he needs her, in order to feel that someone cares about him and how he is hurt. When he is not hurt there is still the interaction, when he is (sometimes) alone she will sometimes go over and talk to him. She loves Jacob dearly and definitely opposes any move that would interrupt this relationship.

On a side note to this, Jacob is well liked by the other kids, both the young ones and some older ones. He is regularly greeted with a big smile and hello, asked to join in and some have said to Hannah that they wish they had had Jacob as their brother. These are positive images that have emerged, which clearly show that once integration is encouraged, good perceptions based on experience develop within the community.

Forced segregation of kids into special education is an act that violates the core family values of love, unity and togetherness. Violates the rights of the kid by denying them their current stability and excludes from consideration their important support persons, for Jacob it is Hannah . It denies the kid the right to attend the school of his or her brothers and sisters, or attend the school of his/her father or mother. It interrupts the flow of the family in it's life cycle and traditions. At a society level it is nothing short of the apartheid mentality, which should be actively discouraged at every turn, by every decent person.

We have emptied the institutions for the intellectually challenged, the wards are empty, the patient mentality gone, for representatives of the education department to force this option (a cultural perception of what is needed) of special education or other 'special training places' onto parents, is morally wrong, deplorable and archaic and should have been ended when the institutions were emptied. If you live in such a country, I am sincerely sorry for you, fortunately, in Australia, the value of integration is growing in momentum.

All kids have the moral right to be raised as integrated members of the society in which they will spend their lives and NOT be treated as second class citizens and segregated off from everyone they know. Relationships should be allowed to flourish, not curtailed and ended with segregation. Jacob has spent 3.5 years in a normal school. How do you think he or any of your kids would feel if they were on the other side of the segregation fence of special education, looking out at all the places and people on the other side they were a part of. They would be devastated. Jacob hasn't asked to go to special education, he's happy and flourishing where he is.

As an adjunct to this, segregation has the same double sting of the apartheid movement, not only does it segregate people off as inferior - which is how most will view the people in special education, no matter how nice they may put it - but it also means the people who they are segregated from will not experience any real contact with them during their school life and will form opinions of them based on other peoples perceptions, making it much harder for the intellectually disabled to be integrated as teenagers and adults. One of the big problems the school principal is aware of, is that there are few if any people with any experience with Down Syndrome. How can this be, when Down Syndrome is the most common cause of intellectually disability in the world? How can it be anything else when the opportunity to interact with these people was non-existent . People with Down Syndrome were always either aborted, institutionalised, or segregated off. Even parents were once ashamed to walk down the streets with their kids with Down Syndrome. With the growing interaction between those with Down Syndrome and the greater community new attitudes are slowly emerging, with one lady we know of actually wanting to be lucky enough to fall pregnant and have a baby with Down Syndrome, because they are so much nicer. Yes, times are changing and we should not try to stop or slow down opportunities for integration. Remember the times when University was seen just for the young adults, now the elderly actively participate and bring a life time of experience with them.

Why do many more parents decide to abort babies with Down Syndrome? Fear. Segregation keeps that fear going and the fear causes parents to kill their offspring. Fear of the unknown and the misperception that Down Syndrome is real bad and too difficult to cope with - a popular cultural perception of Down Syndrome. Things are changing though, the future looks more and more promising for people with Down Syndrome, as more are now entering the workforce, perhaps the fear that parents have when confronted with diagnosis Down Syndrome, may be going to lessen.

We are lucky living in our state of Australia, as in our state, the people with disabilities, such as Down Syndrome, cannot be forcefully segregated out. The emphasis is suppose to be on integration, with only the parent making the choice of whether to go special education or not.

Down Syndrome Movies - Helping to break down the false cultural perceptions of Down Syndrome.

Jacob, a kid with Down Syndrome, Aged Almost 5 Years: Watch Some Small Movies of Him. As you can see from these movies / videos of Jacob, the Down Syndrome has not curtailed his activities that I can see. The movies show him to be a young boy doing young boyish things. These movies are typical of what he loves to do, play, explore, get outside. From these movies, I hope you can see, that even though Down Syndrome is present, he is still a person, still a little boy, just like other little boys. A boy who dreams, wants things, needs things ... has night mares too. I should put a movie here of him hugging and cuddling, just so you can see that the Down Syndrome has not stopped these beautiful moments either.

So, you've been told your baby in your womb may have Down Syndrome. The doctor has told you about aborting your son or daughter. That Down Syndrome is too much for you to bare. In your heart you are not sure. It's your baby he is talking about. Is that going to be your final solution as well? Or, you know you are going to give birth to this baby with Down Syndrome and, like most of us, are simply trying to see into the future - these movies / videos may be of help in seeing past the diagnosis Down Syndrome. You may also be interested in reading part 3 of Responses to Newborn with Down Syndrome, which offers some suggestions for what may be done if the spouse doesn't want the baby with Down Syndrome but you do.

So, what do these Down Syndrome movies / videos do? They offer you time to spend with with my son, Jacob. Have a taste of his life and the happiness he has. The joy he brings to us.

Life isn't perfect with Jacob, he does pose dificulties for us, but he is our son and we love him like we do all our other kids. We wouldn't give up on them if they were in a car crash and left disabled. It's interesting to note, that some students don't see the Down Syndrome in him, but see the speech delay as resulting from a car accident. Down Syndrome, as such, is not normally something students are aware of.

So here's some Down Syndrome movies!

Jacob Eating His Chips - avi Down Syndrome movie 1 - 2.75mb.

Jacob Making Scones - avi Down Syndrome movie 2 - 2.75mb.

Jacob Playing in Sandpit - avi Down Syndrome movie 3 - 792kb.

Jacob Walking Around Yard - avi Down Syndrome movie 5 - 893kb.

Jacob Playing on Trampoline - avi Down Syndrome movie 6 - 1.65mb.

Here are some more movies taken about 8 months later. They were taken while we were on holiday in Melbourne and Bendigo. Jacob travelled very well - considering it was a 450km road trip each way, he did better than virtually any five year would! He loved the zoo, museum, botanical gardens - loved chasing the ducks - Fitroy Gardens, Melbourne Aquarium - he didn't like fish that were bigger than him! - Queen Victoria Markets. Oh, and Puffing Billy - a steam train in the Dandenongs - he absolutely loved. For the three hour return trip, he loved just watching out the window, being cuddled - got upset when the train trip came to an end, just like me.

Jacob eating hard ice cream - MOV Down Syndrome movie 945 - 3.58mb.

Jacob Playing on MacDonald's playground - MOV Down Syndrome movie 861 - 7.57mb.

Jacob being pushed on swing in Fitzroy Gardens - MOV Down Syndrome movie 096 - 2.11mb.

Jacob Playing in a wet playground on way home - MOV Down Syndrome movie 1035 - 7.6mb.

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