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The Long Wait Finally Ends

Does the inclusion of achondroplasia, the most common type of dwarfism, in Turkish disability legislation mark a change in social attitudes to disability?

by Uygar Gultekin 10 June 2019

As our regular readers know, TOL normally does not cover Turkey, unless an issue concerns one of the countries we do cover in post-communist Central and Eastern Europe and Eurasia. However, for the last few months, we have been making an exception because of the dire situation faced by many journalists in Turkey since the attempted coup in 2016. After that dramatic event, almost 200 media outlets were closed down and scores of critically minded journalists lost their jobs and now struggle to eke out an existence. We are proud to provide some international exposure to many of these Turkish reporters and expand, at least for now, our mission of supporting independent journalism and the freedom of the media to this fascinating and important part of the world.

 

Campaigners say that Turkey’s recent decision to recognize people with achondroplasia (ACH) – the most common type of dwarfism – as disabled may signal significant progress in the country’s attitude to disability.

 

Turkey has been introducing anti-discrimination legislation since 2014, including incentives to workplaces employing disabled citizens, such as free loans, tax reductions, and subsidies. Although Turkish labor law already requires employers to hire a certain number of disabled workers, implementation is patchy and not all conditions are included.

 

In February this year, ACH was finally categorized as a disability. Those affected are deemed to be 40 percent-disabled and can access benefits including early retirement, reduced taxes, and free medicine and insurance. Previously, those with ACH had to provide extensive medical documentation that their health problems did not allow them to work after a certain age.

 

“I filed suits, I made petitions, and I launched complaints to all relevant government branches,” said Umut Kosemen, speaking about the 10-year campaign that he spearheaded. “I e-mailed the ministries and members of the parliament. I started campaigns on social media and appeared on various TV programs.

 

Umut Kosemen, who suffers from achondroplasia (ACH), spearheaded the efforts to recognize the condition as a disability. Photo: Umut Kosemen's Facebook page

 

“It took me a long time to get any results, but I finally succeeded,” he declared, adding, “People with achondroplasia will now officially have the status of disabled persons and the benefits they will be entitled to should make their lives a little bit easier.”

 

Kosemen explained that access to specialized health care was particularly important for people with ACH as they often struggle with various health problems related to this condition.

 

According to some medical studies, the life expectancy of individuals with ACH is 55 years, as they are prone to heart disease. The state retirement age in Turkey – when people become eligible for pension benefits – is 58 for women, and 60 for men.

 

“People like us cannot live very long. I am surprised that I’ve reached this age,” said the 45-year-old Kosemen. “When I was born, my mother was told that I would not live longer than a year, but she is a fighter and she did not give up on me. I am still alive thanks to her.

 

“I had problems with my spine and had to undergo many surgeries,” he continued. “People with my condition get deformed joints quite early and our ability to move decreases with time. Everyday obstacles create many problems for us, too. Public transport, toilets, even ATMs are designed for taller people.”

 

Making Disability More Visible

 

Suleyman Akbulut
There are around 250,000 people in Turkey with ACH, but Suleyman Akbulut (pictured), head of the Social Rights and Studies Association and a prominent voice for disability rights, said that the repercussions could be much wider.

 

“In the past, disability was considered a medical problem, but it is now treated as a social issue,” he said. “People with disabilities are finally being recognized as people whose human rights must be respected.”

 

That was the experience of Aynur Yildirim, 39, who works at a center for the disabled in Istanbul. “When I went to see a doctor in 2003 to be examined, he told me that I was ‘in perfect health … there is nothing wrong with you, you can even do weightlifting,’ he said. I had to undergo many other examinations before I finally proved to the Ministry of Health that I was 40 percent-disabled,” Yildirim said.

 

“Doctors did not want to admit that we were disabled. On the other hand, employers did not want to hire us due to our physical appearance. Many of my friends had the same problem,” she added.

 

Kosemen’s working life has also been fraught with difficulty, despite being well-educated, with a university degree. He has now been able to take early retirement, thanks to the new regulations.

 

“No matter how good your credentials are, your physical appearance matters more, especially when you go to a job interview,” he said. “Getting hired when you have ACH is not easy.”

 

Kosemen, who recalls being taunted with cries of “dwarf” at school, said that recognizing ACH as a disability was a first step to wider change. More work is needed to increase the accessibility of public services, for instance. For Kosemen, who is 137 centimeters tall (about 54 inches), even the counters in government offices and the banks are too high.

 

He also called on others to recognize prejudice and work to combat it, adding, “We face discrimination in society on a daily basis, and it is difficult to for others to understand that.”

Uygar Gultekin is an Istanbul-based journalist at the Armenian-language weekly Agos. He mostly writes about politics, human rights, minority rights, and Kurdish issues. Gultekin won the Musa Anter Journalism Award in 2008 in the best news piece category.

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