They need

 

 

 

Undefeated Souls 

 

         Amira Abdel Aziz sits on her wooden chair, staring at the aging trees outside her tiny room windows. With a woven bamboo basket in her hands, the 35-year-old stretches up toward a shelf which holds a lineup of other bamboo products in order to add her newly crafted item to the collection.

         Amira goes to a care facility for the intellectually disabled every day for from 9 a.m. to 3 p.m. She usually spends that time making bamboo baskets. Selling baskets is Amira’s sole source of income.

         There are millions of people with intellectual disability in Egypt. Intellectual disability, also known as intellectual development disorder, is a disability characterized by significant limitations in both intellectual functioning and in adaptive behavior, which covers many everyday social and practical skills. Signs of the illness usually surface before the age of 18.

         Amira was diagnosed with Down syndrome 25 years ago. She is one of 15, 903 Down syndrome cases in Cairo, and affecting one in every 700 births. People with Down syndrome usually have distinct facial features such as, flat faces, wide eyes, short neck, small head, strangely shaped ears, short height and poor muscle tone. It is commonly caused by a random error in cell division that results in the presence of an extra copy of chromosome 21, which comes from the mother’s egg or the father’s sperm after fertilization. Amira exhibited the first signs of the genetic disease when she was 10-years-old.  Her parents admit that they were not prepared when they first   found out about her condition due to their limited knowledge on the illness. So they immediately sought professional help.

 

“People with disabilities are capable of great achievements.” Amira’s disability did not prevent her to become a swimming champion,” says Amira’s mother, Suzan. “Every morning, she used to wake up, exercise and swim enthusiastically but this, of course, was before she developed her eating disorder and before she started putting on more weight when she was younger,” she added.”

         Every day thousands of DS patients are threatened by potential health deteriorations such as reduced muscle strength, bone deficiency, blood pressure, mutations, Alzheimer and eating disorders.

         Not only did Amira’s disorder negatively affect her intellectual development, it also took a tool on her health due to the eating disorder she has developed over the years. She is currently living with her parents after being admitted to a rehabilitation facility for 25 years.

         Amira knows that she is ill but doesn’t fully understand the causes of the disorder. Amira is intellectually much more intelligent and communicative compared to her peers. “I love the place here and especially, Ms. Doaa’s computer class because it makes me feel happy, said Amira.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Understanding disability

 

         The Declaration of Rights of Intellectually disabled Persons adopted in 1971 states that the intellectually disabled individuals have equal rights to other human beings including “the right to educational, medical , and economic security, as well as rights corresponding to a particular needs in the medical and educational fields and a decent standard of living.”

         Abeer Tawfeek, director of The Right to Live Association which helps the intellectually disabled said, “The challenge with disability is that it accompanies the disabled person throughout his or her life. “And thus, every one of them should have an equal right in education, treatment, employment and living just like anyone else.”

         Amira’s mother, Susan, agrees with Tawfeek explaining that people should develop more awareness about intellectual disabilities. “I personally do not blame them as I know that they lack the proper awareness and the required knowledge and background information to understand these kinds of disabilities,” Susan added.

 

The State’s Role

 

         According to the Central Authority for Public Mobilization and Statistics, there are between 3.85 and 4.7 million disabled persons in Egypt, which accounts for 3.5 Percent of Egypt’s total population. More than 70 percent of people with disabilities are mentally disabled. Meanwhile, there are more than 590 government programs, hospitals and facilities in Egypt and over 800 schools for disabled. There are also about 300 private facilities and organizations which provide assistance to people with intellectual disability in Cairo. However, Tawfik says that more needs to be done on the government’s part in order to support people who suffer from disability. “Their Ministry of Social Support and Communal Affairs funds, training and expertise should target disabled people in Egypt in general, and NGOs along with charitable institutions in particular,” she explained, “we cannot do all this on our own."

         Doaa Fadl, computer teacher at The Right to Live Association also, added that “the state has to exert more effort in aiding and funding such specialized associations in order to improve the lives of the disabled people.”

         For Amira, computer and theatre are her most enjoyable activities at the facility. Her only wish, for now, is to buy an I-pad.

 

 

By: Serag Eldin Yassin