Egypt ac­tivists chal­lenge men­tal disability stigma

Muscat Daily - - REGION -

Cairo, Egypt - 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 93mn, an es­ti­mated 14mn 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 This file photo shows Ghada Tos­son and her daugh­ter Lo­jine leave a school af­ter the lat­ter, who has Down’s syn­drome, took her high school exam, in Cairo’s south­ern Hel­wan district on June 11

few and far be­tween.

“Most of them are stay­ing at home, de­prived of any ser­vices,” she says, adding that only two to three per cent 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.


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

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.

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.


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