INTERVIEW: May Zain El Din on improving the lives of the differently-abled in Egypt

"I felt eerily unhappy, like I had nothing else to offer life, and the latter had nothing to offer me. I left my job at one of the leading communication establishments in Egypt, only shortly to see that life was actually going to unfold in the most unexpected way," May Zain El-Din said, describing the time before the accident that left her son, Hassan, dependent on a wheelchair.

The smiling mother is a shining example of an extraordinary woman who refused to be defined by a striking tragedy almost five years ago.

She became determined afterwards to see changes to facilities dedicated to persons in the same situation in the country, founding Al-Hassan Foundation for the Inclusion of Differently-Abled People.

Over the course of its first three years, the foundation opened multiple doors to people in wheelchairs and others also "differently abled." Zain El Din shared with Ahram Online the story behind the groundbreaking project:

From Egypt to Germany

"After the accident and for three months we were overwhelmed with love and care, from doctors here in Egypt, and from our friends and family; and this flood of compassion was one of the huge motivations for me later to give back my community," Zain El Din says.

At that time and in a quest for thorough answers, Zain El Din headed with her son to a specialised hospital near Munich in Germany.

"They didn’t waste time, and at that very same day the doctors confronted us with what was known all the time by everybody except us. Hassan will never walk again

Leaning life from scratch

"The denial and the outrage on my side subsided to give space to rational thinking, and we started together a three-month journey of a daily routine in the hospital that saw my son learn from scratch how to perform basic daily activities.

"I was overwhelmed with the precision of the rehabilitation process and how they thought about everything, from increasing his physical abilities to opening doors of hobbies, interests and possibilities. The target was to let us believe and feel that life with its endless possibilities is not coming to an end, but rather taking a different form. And they succeeded.

"When we came back after three months to Egypt, I felt drained and devastated, as if the accident had just happened. I felt I needed time to heal, and it took me several months to get back on my feet," she recounts.

Birth of an idea

After several months, the idea of the foundation was not on the cards. It took three main events to bring it to the surface.

"The first one was a conversation I had with my son when I was completely devastated, and I was struck by the strength he developed over time.

"I found myself in front of an 18-year-old, in a wheelchair, assuring me that he was happy and in a good place, and it was then that I began feeling not entitled to such a state of devastation.

"Then I learned about a girl who had a similar accident, and I was asked to help with the knowledge we acquired. The bliss of reaching out to others helped me begin looking outside the scope of my ordeal," she adds.

The third turn of events was the final trigger of launching the foundation.

"It was when I started helping wheelers - whose medical condition was far worse than what we witnessed or who were less fortunate financially - that the urgency to be a factor of introducing change took me by storm," she explains.

Customising solutions

With a small group of 15 friends, a board of seven members, and a rented cab, the foundation saw the light, with a "customised chair" being the foremost project adopted.

"When the accident happened, we bought the best chair in Egypt, at the cost of EGP 2,000 at that time, thinking that this was the utmost we could do.

"But when we went to Germany, they took away the chair, and they said, 'If your son had any chance of walking, this chair blew it away.'"

It was in that incident that Zain El Din learned that the right chair makes all the difference.

"Each case has to have a customised chair according to endless variables; height, length of arms, type of injury, gender ... etc. It simply has to act as a part of this particular body," she explained

Projects of hope and possibilities

Zain El Din tells how more projects ensued, all of them aiming at spreading awareness of the fact that wheelers are differently abled, not disabled, and that they can do everything, but differently,

"Through the 'Transitional Period Project' we work on enabling the person to smoothly move from being fully able-bodied to his life on wheels, addressing everyday practical and social needs. It takes a period of two to six months."

"Another project focuses on creating a database that encompasses all information about our registered wheelers, who exceed 3,000; their type of injury, income source, gender, location, etc. It acts as a registry for the community as a whole."

"Awareness is vital in our work. We issued a booklet titled 'Life on Wheels' in simple Arabic chronicling the life of a wheeler, and created short video clips about persons in wheelchairs, in simplified language to ensure maximum reach."

Other projects introduced by the foundation are the "Source of Income Project," providing wheelers with support to initiate startup projects. They also help wheelers engage and train in sports, and have access to compete in the Paralympics.  

Lately, the foundation introduced another groundbreaking project: "Equipped Transportation."   

"In private cars and public transportation, we lack vehicles that are modified to ease access for wheelers, so we work on attaining that as much as we can," Zain El Din adds proudly

Dealing with the inevitable

Dealing with regulations and governmental bodies has been always a hurdle in Egypt, but Zain El Din maintains a positive spirit.

"Through the debate on the recent NGO Law in Egypt, we have been remaining positive, in spite of adversaries, focusing on work rather than dissipating energy on conflicts," she says.

"Naturally, we suffer from typical Egyptian autocracy, but we also acknowledge it is inevitable to cooperate with bodies like the Ministry of Social Solidarity and the Ministry of Sports and Youth, and they helped us realise many of our goals and easily bring into life some of the major events we staged, like the recent marathon that saw the biggest gathering of wheelers in Egypt."

Reaching further

"The team of the foundation – which is 80 percent wheelers – takes all the credit of us being able to reach further parts in the country.

"We hold four events each year. Two in Cairo and two in other governorates, depending on the numbers of persons in wheelchairs in each governorate," Zain El Din comments on the outreach of the foundation in recent years.

Zain El Din adds that quality of service is not negotiable.

"We work very hard to reach out to as many wheelers as we can, provided that we restrict the number of those we serve to ensure the best quality of service we can provide to each," she says.

Wheelers at work

Zain El Din addressed the tricky issue of creating job opportunities for people in wheelchairs.

"The work atmosphere is very tricky. It is never an issue of a decree to dedicate a number of jobs to the differently abled in governmental establishments and leave it at that, but rather creating the facilities that enable each of them to go to work easily and with utmost accessibility. Add to that the inclusion of proper medical coverage and transportation means, and only then we can begin to say that we facilitate an environment that makes the wheeler believe he is productive," she says.

"So we decided to walk the talk, and create the right experience of work at the foundation for our staff, before demanding from others. I saw firsthand that wheelers engage so heartedly and sincerely at the job. Ultimately, it's their community, their needs, and they are the ones who care the most and work the hardest.

"Sometimes I think back in time to when I was so hopeless that I thought life was coming to an end, and then look at my son now, who is the only professional basketball player of Arabic descent in the US, brimming with high self-esteem and confidence, and I see the progress the foundation had achieved in terms of reaching out and spreading the word of help and awareness, and changing mindsets."

"When I do that, I know we have gone a long way and I am overwhelmed with hope, bliss and the will to introduce change," she concludes with a smile

Source: Ahram online