In Pursuit of a Normal Life

A LEGITIMATE DEMAND: Disabled people in Lebanon demand the government implement a 15-year-old law that forces public and private sector companies to employ people with special needs.

Disability is not the end of the line. Say people with special needs.

By Mostapha Raad
Photographs by Mostapha Raad

It is often said that there are no disabled people, but there are disabled societies, which don’t accept those who are different.

If our societies are built on the notion that everyone is equal, with equal rights and duties, then there should be no dispute over the nature of the citizens.

“A disability is created by the imaginary barriers, which are society imposes. New technologies have helped the blind, deaf and mute to communicate with others,” Silvana Laqiss, head of the Lebanese Physically Handicapped Union (LPHU), tells Newsweek Middle East.

What some societies fail to understand is that people with disabilities are an integral part of any community who must not be marginalized. In this article, Newsweek Middle East offers a glimpse into the lives of three people, which were forever altered by unfortunate incidents; yet they were able to change their story into that of inspiration and hope.

Joe Rahhal: Ain’t No Mountain High Enough

26-year-old Joe Rahhal  has inspired many to stay strong in the face of challenges. A video of his struggle went viral this year and touched millions of viewers.

26-year-old Joe Rahhal has inspired many to stay strong in the face of challenges. A video of his struggle went viral this year and touched millions of viewers.

Joe Rahhal, 26, was not born with a disability, but as a preterm baby, a medical error led to an increased level of oxygen in the brain, damaging the area responsible for his motor skills and forever binding him to a wheelchair.

Growing up, Rahhal did not need an education for the world to embrace him. He needed an inclusive society that would accept him and other people with special needs. To him, it was the most important thing in the world, and an education would help him achieve that.

“We should always fight for a more humane society, which we all aspire to live in. After all, anyone can be subject to an accident that may change that person’s life completely,” he tells Newsweek Middle East.

He adds that no one should allow himself or herself to fail, citing Australian motivational speaker Nick Vujicic as an example. Vaujicic was born without arms or legs, but that never stopped him from becoming one of the best motivational speakers in the world.

“Ludwig van Beethoven, the famous German composer stunned the world with his masterpieces after he became deaf,” he says with enthusiasm.

But the road for Vaujicic, Beethoven and many great personalities with disabilities, was not paved with roses. They had to work hard, possess an unshakable faith that they will get to a better place and they also had a strong support system to push them forward.

Rahhal had never imagined that one day his choked up voice and tears would break the public silence in Lebanon. But he did just that when he appeared on live TV in 2001 to speak about the hardships and agony of disabled people who wish to attend school.

The then 10-year-old child’s sad eyes as he told his mother “It is ok. Let them film this. I want the world to know how hard it is,” shocked the audience and viewers alike. He was crying because several schools had refused to enroll him claiming he was “slow in writing and in speaking,” in addition to being in a wheelchair. They went as far as claiming that his condition would affect the other students.

A decade later, the Lebanese society’s awareness on the subject of disability did not change much.

At first, I braced myself for an emotional encounter with Rahhal, and I even hid a couple of tissues in my pocket in anticipation. After all, the video of his struggle had gone viral this year and touched millions of viewers.

But my meeting with Rahhal was nothing like I had imagined. He appeared to me as a man who is wise beyond his years and who tirelessly spreads hope for a better life.

“I am convinced that I am equal to everyone else in terms of my rights and obligations. This wheelchair you see me sitting on is nothing but a tool that I use to facilitate my life, which is filled with plenty of picnics, outings, love and activities.”

He then let me on a little secret. “This news is exclusive to Newsweek Middle East,” says Rahhal, adding that the will be getting married soon to his sweetheart of two years.

Today Rahhal has a university degree in political science and works for Alfa, one of Lebanon’s telecommunication companies. He insists he doesn’t receive any special treatment compared to his colleagues, and says he plans to run for parliament in five years’ time to help other people with disabilities in Lebanon.

“My life and struggle prove that people with special needs are not only capable of dreaming big, but also of achieving their dreams. We have to have a primary role in our society,” says Rahhal with conviction.

The Government’s Shortfall
“Joe is the victim of the wrong policies and general practices for which the Lebanese government is yet to find a solution,” says Laqiss.

She says the Lebanese government has a long way to tread before people with disabilities start to enjoy their rights as equal citizens in society.

According to her, the Ministry of Social Affairs had set up a national commission to follow up with the affairs of disabled people, yet its activities remain obscure unless there is an official event.

“I don’t know if it is still functional,” she says mocking its inefficiency.

What is more interesting is that out of 30 ministries in Lebanon, the Ministry of Social Affairs is the only one partially equipped to welcome people with disabilities; despite the presence of Law #220, issued in 2000, which supports disabled people and their rights.

“We continue to monitor and register all the violations committed against people with disabilities, be it at work, or lack of facilities that enable them to move freely. Even complaints related to healthcare services are registered and they constitute 19 percent of the total complaints we receive annually,” adds Laqiss.

What’s the Right Number?
According to a 2011 World Bank study, people with special needs constitute 15 percent of the Lebanese residing in Lebanon.

However, according to data provided by the Ministry of Social Affairs, there are only 90,583 holders of disability cards issued by the ministry.

Other grassroots organizations dealing with people with disabilities put the number at 10 percent based on their door-to-door surveys. They also insist that up to 80 percent of those suffering from a disability don’t hold a card from the ministry.

Among the card holders, 55 percent suffer from physical disabilities. Male card holders constituted 62 percent, while females were at 38 percent.

According to the ministry’s data, viewed by Newsweek Middle East, most of those with disabilities were in the working age group of 35 to 65 years old. Only 3 percent of the card holders had learning disabilities.

The World Bank study also notes that up to 83 percent of people with disabilities in Lebanon are unemployed.

By law up to 3 percent of jobs in the private and public sectors are reserved to people with disabilities. This quota is often disregarded by companies in the private sector, as does the public sector, in violation of Law 220/2000.

Fadi Sayegh: The Optimistic Architect

NOTHING IS IMPOSSIBLE: It took Fadi Sayegh 15 years to accept and get over his paralysis. He has invented over 50 machines to facilitate his daily life, including one to dress him and a mechanical system to get him into his car.

NOTHING IS IMPOSSIBLE: It took Fadi Sayegh 15 years to accept and get over his paralysis. He has invented over 50 machines to facilitate his daily life, including one to dress him and a mechanical system to get him into his car.

In 1982, then 20-year-old Fadi Sayegh fell from a height and broke his neck. The injury caused the civil defense volunteer and engineering student to suffer from quadriplegia, a paralysis that affected his four limbs, though he retained slight movement in his arms. He could no longer eat on his own, get dressed, take care of his personal hygiene or even take public transportation on his own. The once active young man was told at the rehabilitation center that he has been rendered useless; and after helping others he needed someone to help him full time.

Though the doctors are certain that he can never move again, Sayegh’s brain remains fully functional and he refuses to surrender to despair.

Fifteen years after the accident, Sayegh’s talent and his passion for inventing new things, helped him redesign his house to accommodate his needs.

“I knew that one day my loved ones and friends will be gone and I didn’t want to bother anyone with helping me all the time, so I redesigned everything around me to serve me,” he says.

The house, which many call the “flying house,” enables Sayegh to access every corner of his home. It also allows the objects from around the house to reach him, and not the other way around. Everything has wheels and is remotely controlled.

“The first machine I built was an electromechanical lever which enabled me to carry myself from my wheelchair to bed. It took two people to do that job in the past. After that the inventions kept rolling,” he adds.

A year later, he invented a machine that would carry him into his car, which is also specially designed. Another machine he invented in 2000 carries his wheelchair atop his car’s roof.

“Feeling independent is special. It is equal to feeling my feet and walking instead of sitting in a wheelchair.”

Sayegh has over 50 invented machines under his belt, executed by skilled workers for low prices, using metal and used items.

And it seems that every time Sayegh faces an obstacle he thinks of a way around it. He has one machine that dresses him, one that sets the bed, and a fiber-glass sink that took six months to build. The sink moves in any direction he needs it to move, and it has no base.

“For me, I managed to prove true the idea that even if a man lost most of his control over his physical ability, he can still regain the functions he lost without anyone’s help.”

One thing is for sure, says Sayegh, and that is “Life goes on, and hope springs eternal.”

Ahmed Al Ghoul: Lebanon’s Top Para-Athlete for Hand Cycle
It was a harsh blow that fate traded firefight sergeant Ahmad Al Ghoul, 39, three weeks after his marriage in 2004. It took one car accident to turn his life upside down. He woke up from a coma to find out that he was paralyzed from the waist down and it took him four years to come to terms with his reality.

The best athlete among firefighters between 2001 and 2002 had a lot of adjusting to do, including being forced away from playing football, which he played at a professional level.

It didn’t help either that his wife left him three years after the accident for not being able to cope with his new condition, though he says they split amicably for the sake of their son.

In 2008, Al Ghoul got introduced to Beirut Marathon’s Project and he instantly saw hope.

His first “race to regain hope” was in 2010, and it wasn’t easy, but he managed to cross the finish line on his hand cycle after traversing 42.196 kilometers.

The thrill and challenge pushed Al Ghoul to take part in international races as well.

He tells Newsweek Middle East that he managed to win the 2014 Bucharest International Marathon, and that he is training for the 2018 Asian Games where he is “determined to nail the gold medal for Lebanon.”

Would love conquer all?
Though many call for respecting the right of people with disabilities to getting married and forming a family, yet they don’t know the kind of responsibilities and pressures that come with such a decision, say specialists.

According to Wadih Nassour, a psychotherapist with The Lebanese Institute for the Disabled: “It is not advisable to take such a step [marriage] without fully studying all the aspects first.”

Many rush into marriages without being fully prepared mentally and even economically to cope with it, says Nassour.

And when children of those marriages grow up and look for a role model, many are unable to cope with the fact that their protectors in fact need their protection.

There is also the situation of the healthy spouse who at one point or another would start feeling as if he or she got married to serve their better half, which “if it accumulates without being addressed over the years, may lead to problems in that marriage going forward.”

Sayegh believes that “marrying for the sake of having a partner who would serve him/her, that that is wrong.” But he shuns away from touching on the emotional side, saying it is relative from one person to another.

For Rahhal, “life has many scenarios and it all relies on how we approach each scenario. But there is no reason to refuse getting into a relationship with anyone, be it normal or disabled. You may be able to walk but if you don’t know how to deal with people and your partner, then you’d fail the morality test.”

It is worth noting that Rahhal’s fiancée is not a special needs person and that they are both in love.

As for Al Ghoul, it was mainly external interferences that impacted his short-term marriage, so he cannot judge that.

“It doesn’t, however, mean that I am not ready to marry again if I found someone who would cope with my situation,” he says.

 

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