Egypt activists challenge mental disability stigma

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Egypt activists challenge mental disability stigma

Post by DJKeefy »

Ghada Tosson waits anxiously outside an Egyptian high school in the Helwan district south of Cairo as her daughter with Down's syndrome sits her end-of-year exam.

Winning the chance to sit standard high school tests took years of fighting in a country where people with mental disabilities are often marginalised and receive little assistance.

"I'm so proud. We've been fighting for 18 years for this moment. She sat the exam like any other high schooler," says Tosson.

"No matter the result, it's proof that it can happen."

She is visibly moved as her daughter comes out of the school, smiling and looking serene.

Out of Egypt's population of around 93 million, an estimated 14 million have some form of disability, says Eglal Chenouda, director of the SETI Center, a section of Catholic charity Caritas which supports the disabled.

Three-quarters of them have a mental disability, she says. The organisations helping them are few and far between.

"Most of them are staying at home, deprived of any services," she says, adding that only two to three percent of them receive the services they need.

But activists are working to tackle public ignorance around mental disability and the stigma it carries -- something they say is as important as providing services.

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- Integration -

That is a core part of the mission of SETI, which stands for "Support, Education, Training for Inclusion".

Fighting stigma is a big part of the battle. Tosson says that when she was looking for nursery schools she had to contact at least 50 before she found one that would enrol her daughter.

At SETI's toddler section, four-year-old Yassin does learning activities under the care of his mother Hoda Abdelkhalek and a Caritas trainer.

Focused, the young boy with Down's syndrome stacks coloured rings around a cone.

Abdelkhalek says the family found out about his disability the day he was born.

"It was very hard," she says. "(The doctor) told us 'your son is Mongolian'," a term used in many countries for people with the syndrome but which many consider derogatory.

Hospital staff advised her to isolate the baby in a separate room several times a day and limit his contact with his older brothers.

At SETI, she was taught the opposite. Staff urged her to integrate Yassin into the daily life of his family and the neighbourhood.

Chenouda says it is important to change public attitudes, convince people that disability is a rights issue and to "include the disability issue in all services".

But the services provided by organisations like SETI fall far short of the huge demand.

- 'Not enough -

Egypt has just 68 institutions able to provide care for the mentally disabled, says Khaled Aly, who heads the rehabilitation department of the ministry of social solidarity.

"It's not enough compared to the number of mentally disabled people, but we're on the right track," he says.

Aly says a new bill set for a parliamentary vote next year will give the government more responsibilities and improve communication between the health and education ministries.

He adds that the ministry already organises workshops in villages in rural Upper Egypt to "inform and sensitise" people to issues of mental disability.

Other initiatives in the country have shown that integrating the disabled into Egyptian society is both possible and beneficial.

Olfat Salem has been organising cultural and sports activities for the mentally disabled at the Alexandria Sporting Club for 20 years.

"The families used to be ashamed; they would come at the club late at night, sit in a dark corner," she says.

Playing sport transformed the children, she adds.

"Receiving a medal gives them happiness you could not imagine. It gives them self-confidence. And now the families are proud of them as well."

Source: http://www.dailymail.co.uk/wires/afp/ar ... tigma.html


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Re: Egypt activists challenge mental disability stigma

Post by Dusak »

My friend has tried for years to get her youngest brother a job, [25] he suffers from this problem. He really does want to work, but all she has tried turn her away. There is one organization in Luxor that caters solely for these people, but it is always full, far to many applicants for the places available. The 'extra' chromosome 21, the cause of this, can be detected during pregnancy. Some mothers have had a termination when this has been discovered, but little or no hope of that becoming a choice here. But if it was, would it be an exceptable one, here or anywhere else for that matter.
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Re: Egypt activists challenge mental disability stigma

Post by newcastle »

Even in the UK, where there is extensive support for those affected by Down's Syndrome, 90% of affected foetuses are aborted if detected. Screening is now routine

The procedure is usually taken at 14 weeks....which may come down as chromosomal detection techniques improve.

It's an emotive topic of which I have personal experience.

In Egypt, where the prospects for a Down's syndrome child are pretty grim, I suspect there's a greater argument for abortion but, as far as I know, the law does not permit it.
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Re: Egypt activists challenge mental disability stigma

Post by Horus »

Taking a purely dispassionate view of this and not denying that most of the people affected by this (and yes I have known many in my life) are such loving individuals, I would ask the question that if we can detect such a condition at a very early age then it is not right to do something about it? Even if they from their perspective they live a happy life, it is usually quite short by comparison and often condemns the parents to a life of total dedication until that final sad outcome is reached. So would it not have been better that (if we exclude religious beliefs) we terminate such a pregnancy early and before the foetus develops further? I think you have to be special kind of person to be able to cope with what must be a huge burden and I have seen older couples who were in fear of their child outliving them and the strain it put upon them in trying to cope, I can only admire those that can do so.
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Re: Egypt activists challenge mental disability stigma

Post by newcastle »

As I'm sure you know Horus, Down's syndrome can produce a child severely disabled...or one bordering normal.

It's a dreadful dilemma for any parents but the decision (whether or not to abort) is one only they can take, preferably without pressure from outsiders who may have their own perspective and prejudices.
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Re: Egypt activists challenge mental disability stigma

Post by Horus »

I agree and would not in any way imply that my personal views on this are correct or should be implemented, it is to say the least a life altering decision to proceed with a pregnancy if the facts are known beforehand, but if they were not and the result is a Down's syndrome child, then they deserve the best of treatment and or dignity and respect as ascribed to any other human being.
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Re: Egypt activists challenge mental disability stigma

Post by Dusak »

I have to say that since living here in Egypt, I have seen a great many of these sufferers. The Egyptians consider these poor soles as ''the devils children'' because of their looks. They are usually unwanted, unloved and to a point, despised within the family as a ''shame,'' especially for the husband for producing such, but of course, this point is never spoken of 'in house' while the husband is there. My friend, sadly to say, is the only family member to treat him as a fully fledged fellow human being, apart from the children, they treat him as a fellow play mate, but once they, the girls, reach around fourteen, they distance themselves from him, as is happening now. She looks after him, showers him with love and affection.

I recently read that one of the theories being discussed is that one cause of this complaint could be due to the too close breading of family members which may be true when you see the low numbers of say in European countries you see, compered to those numbers in Egypt. Recently scientists someplace have discovered that a certain compound injected into mice has given them a better level of intelligence and a clearer understanding of their surroundings and immediate environment. They say, although quite a few years off, this could be the cure of Downs Syndrome, but not their facial appearance.

About four years ago in my friends village a downs syndrome girl of about twelve was found wandering around the street naked. It was eventually discovered that since birth her parents had kept her prisoner in a locked room, tied to a chair in later years. She had managed to escape somehow. No action was taken and the child was placed in a care home here in Luxor. These are the type of adults that you are attempting to teach about child care and limiting the child birth rates.
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Re: Egypt activists challenge mental disability stigma

Post by newcastle »

There's also work being done on gene therapy to "silence" the extra chromosome 21.

Down Syndrome is not a heritable genetic disorder but rather a random failure of the separation of chromosomes during cell division. Inbreeding does not affect its incidence unless there is already a genetic predisposition...evidenced by other cases of DS in the family.

Inbreeding can increase the incidence of other heritable disorders.

You're right D that the prospects for any affected child in many Egyptian families is not good.
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Re: Egypt activists challenge mental disability stigma

Post by carrie »

Little boy near me is mentally and physically disabled, his Dad takes him out for a walk and is really good with him. Because I see him regularly and smile and wave he is coming round a little and smiles at me. He is very nervous though and I dread to think what would happen if he was allowed out alone, the other kids might torment him. Poor little mite.
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Re: Egypt activists challenge mental disability stigma

Post by Horus »

Not quite in the same area, but today scientists announced that they have managed to repair at the DNA level a fault that would normally result in a heart defect.
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Re: Egypt activists challenge mental disability stigma

Post by newcastle »

The advances in genetic engineering are amazing. It's conceivable that by the end of the century we will have the means to correct any number of genetic faults which currently cause great misery.

Of course the religious lobby is wary - suspicious that we are "playing at God".

Assuming God's intentions are always to our benefit, I don't see the problem.

Of more concern is man using the technique for malevolent purposes.
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Re: Egypt activists challenge mental disability stigma

Post by Dusak »

Again off topic, but worth a mention I think. It stated on the news yesterday that experts on weather and climate control predict the total destruction of Southern Asian lands due to what they call ''the wet bulb affect.'' The heat and a very high increase in humidity will prevent human survival in those areas by the end of the century.
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Re: Egypt activists challenge mental disability stigma

Post by newcastle »

Dusak wrote:Again off topic, but worth a mention I think. It stated on the news yesterday that experts on weather and climate control predict the total destruction of Southern Asian lands due to what they call ''the wet bulb affect.'' The heat and a very high increase in humidity will prevent human survival in those areas by the end of the century.
I wouldn't worry.

They have difficulty predicting the weather next week, let alone next century.
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Re: Egypt activists challenge mental disability stigma

Post by Dusak »

The only worry that I would have, if I would still be here that is, it would mean a lot of Thia restaurants closing down.
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Re: Egypt activists challenge mental disability stigma

Post by newcastle »

Dusak wrote:The only worry that I would have, if I would still be here that is, it would mean a lot of Thia restaurants closing down.
Takes us back to genetics.

I was reading about the"Gilgamesh Project" recently....the search for indefinitely extending human life.

I think I could cope with the absence of Thai restaurants (hopefully Bombay's will still be going). But the loss (through accidental death) of loved ones would be an issue. :cry:

As would the perpetual existence of those the earth would be well rid of. :evil:
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Re: Egypt activists challenge mental disability stigma

Post by Winged Isis »

A fabulous episode in a fabulous second series. If you want fascinating, revealing and honest TV with lots of humour and some tears, I highly recommend going back to Series 1 and working your way through all of them. We can't wait for the next.

http://iview.abc.net.au/programs/you-ca ... 617H002S00

Hafiz, are you a fan?
Carpe diem! :le:
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