Egypt ac­tivists chal­lenge men­tal dis­abil­ity stigma

Kuwait Times - - INTERNATIONAL -

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 or­ga­ni­za­tions 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.

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 en­roll 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 col­ored 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 neigh­bor­hood. 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 or­ga­ni­za­tions 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 or­ga­nizes work­shops in vil­lages in ru­ral Up­per Egypt to “in­form and sen­si­tize” 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 or­ga­niz­ing 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.” —AFP

CAIRO: An Egyptian boy with dis­abil­ity does ac­tiv­i­ties at the SETI cen­ter (Sup­port, Ed­u­ca­tion, Train­ing for In­clu­sion), a sec­tion of Catholic char­ity Car­i­tas. —AFP

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