JESSE RAMDEO AND RHON­DOR DOWLAT

The dis­con­nect be­tween in­di­vid­u­als with dis­abil­i­ties and equal ac­cess to op­por­tu­ni­ties re­mains a cause for con­cern for the founder of the Down Syn­drome Fam­i­ly Net­work, Glen Niles.

Dur­ing an in­ter­view with Guardian Me­dia on Mon­day, ahead of World Down Syn­drome Day, Niles con­tend­ed that it was sig­nif­i­cant­ly im­por­tant to bridge the gap and chal­lenged par­ents of chil­dren with down syn­drome to em­pow­er them rather than iso­late them in hopes that they will be pro­tect­ed.

He said, “We are very far as a so­ci­ety in in­clud­ing per­sons with down syn­drome, oth­er in­tel­lec­tu­al dis­abil­i­ties and even phys­i­cal dis­abil­i­ties and that is be­cause of our mind­set.”

Niles con­tend­ed that it was that mind­set where­by peo­ple with down syn­drome are to be treat­ed spe­cial­ly which robs them from ad­vanc­ing their lives.

Ac­cord­ing to him, “We are still firm­ly en­trenched in us­ing that char­i­ta­ble mod­el to deal with peo­ple dis­abil­i­ties. Some­times its like if we don’t know what to do, the best thing to do is put them some­where where they will be safe and se­cure. We cre­ate these nice box­es to put them in, whether its a spe­cial school, spe­cial home and leave them there and have them locked away.”

Niles stat­ed that it was af­ter an in­ter­na­tion­al con­fer­ence that his eyes opened up to how dam­ag­ing our lo­cal so­ci­ety has been to­wards the down syn­drome com­mu­ni­ty.

“See­ing them come in­to a con­fer­ence, this lob­by full of young­sters, chil­dren and adults that was amaz­ing to me and af­ter the con­fer­ence go­ing to restau­rants with them and they weren’t treat­ed dif­fer­ent­ly I couldn’t help star­ing at them and make them un­com­fort­able but com­ing from Trinidad and know­ing we have to take care of them for the rest of their life, they wont be able to do noth­ing that was my whole per­spec­tive.”

He said while par­ents of­ten adopt a cau­tious ap­proach when it comes to in­te­grat­ing their chil­dren with down syn­drome in­to so­ci­ety, he ad­vised that they avoid lim­it­ing their po­ten­tial in the process.

He said,

It starts in the home where they are dis­crim­i­nat­ed against be­cause they are not taught, trained and em­pow­ered be­cause par­ents still think they can­not learn so they are not even go­ing to try to teach them be­cause they think they are spe­cial and we just have to take care of them but we are in­fring­ing on their rights by not let­ting them do what they want.

Niles be­lieved that the cy­cle of ex­clu­sion can be brought to an end if peo­ple with down syn­drome are treat­ed with the same hu­man rights as or­di­nary peo­ple. He said the guard­ed ap­proach lim­its in­di­vid­u­als from reach­ing their full po­ten­tial.

The Down Syn­drome Fam­i­ly Net­work (DSFN) has been an ad­vo­cate for the in­clu­sion of per­sons with Down Syn­drome for the last ten years and cur­rent­ly they are work­ing with the Gov­ern­ment for the draft­ing of a leg­is­la­tion for in­clu­sion for per­sons with dis­abil­i­ties.

Al­so speak­ing with the Guardian Me­dia, hon­orary board mem­ber of the DSFN and the Chair­man of Events and Spon­sor­ship, Lisa Ghany said they have de­vel­oped a re­la­tion­ship with sev­er­al of the gov­ern­ment min­istries and par­tic­i­pat­ed in many of the con­sul­ta­tions re­gard­ing the pol­i­cy for per­sons with dis­abil­i­ties which we cur­rent­ly have in T&T.

“We are at the point of dis­cus­sions re­gard­ing turn­ing that pol­i­cy in­to leg­is­la­tion so that the rights of per­sons with dis­abil­i­ties will be pro­tect­ed and that they can have due re­course in cas­es where they are ex­clud­ed from dif­fer­ent ar­eas of life be­cause of their dis­abil­i­ties,” Ghany said.

She dis­closed that the DSFN has been se­lect­ed to work with the Min­istry of So­cial De­vel­op­ment on the draft­ing of the leg­is­la­tion.

“It is still a work in progress and we con­tin­ue to hope that it will reach to the next lev­el very quick­ly and I know these con­sul­ta­tions take some time and that’s why this year in par­tic­u­lar the Unit­ed Na­tions re­al­ly has fo­cused the en­tire UN World Down Syn­drome Day on ‘With us not for us’ that they stress here the rights with per­sons with dis­abil­i­ties to le­gal rep­re­sen­ta­tion and the right to their own de­ci­sion mak­ing in mat­ters that af­fect them,” Ghany said.

She ex­plained that the plat­form for this year’s con­fer­ence is all about “how do we com­mu­ni­cate with per­sons with dis­abil­i­ties, how do we in­volve them in that de­ci­sion mak­ing process with re­gards to ar­eas of their health, ed­u­ca­tion, own­er­ship of prop­er­ty, salaries, etc and let them have a voice as well.”

Ghany said they have sug­gest­ed that the Gov­ern­ment look at some of the in­ter­na­tion­al dis­abil­i­ty acts that are cur­rent­ly in places like in the UK, the US and Cana­da, “be­cause they al­ready have a work­ing sys­tem that pro­vides for the ed­u­ca­tion of per­sons with dis­abil­i­ties for ac­cess and all the dif­fer­ent ar­eas that we are look­ing at. It re­al­ly do not have to recre­ate the wheel be­cause there are many ex­am­ples of best prac­tices that do ex­ist.”

World Down Syn­drome Day is marked each year on March 21, be­gin­ning in 2007. The 21st day of March was se­lect­ed to sig­ni­fy the unique­ness of the trip­li­ca­tion of the 21st chro­mo­some which caus­es Down syn­drome. Every year on March 21, World Down Syn­drome Day is ob­served to cre­ate aware­ness about Down syn­drome