Returning to the microphone after 16 years… This time from Australia, speaking into the mic once again—even if pre-recorded—while living in Melbourne. And above all, reliving that long-missed excitement that only a true radio broadcaster can understand.
On Saturday, November 8th, at 6 p.m., I hosted Hisseli İstek Kumpantası to celebrate the 30th anniversary of Radyo ODTÜ. My previous HİK broadcast was on October 31st, 2009—exactly sixteen years ago. To be back on air, to reconnect, to take song requests, to share that bond with listeners once more… it was more than just another radio show. It was an emotional return, a story of rediscovery.
We come from the past—the old studios, the recordings, the thrill of going live. Now, in a different part of the world, it’s a recorded broadcast, yet the same spirit lives on. For me, it felt different but still carried the same heartbeat. During the show, we reflected on HİK’s journey and how much has changed in sixteen years—like the buttons on an old mixer, everything around radio has evolved: listeners, platforms, even continents. But one thing hasn’t changed—the love for broadcasting, for music, for that moment when your voice meets the airwaves.
You can listen to the full recording on Radyo ODTÜ’s website. A pre-recorded request show might sound unusual, but it’s part of the story—because change itself is part of radio. ☑ I’ll also share the direct link here soon.
Stay tuned, stay with music.
Podcast / Broadcast Recording:Radyo ODTÜ – Hisseli İstek Kumpantası, November 8 (You can find the recording on the Radyo ODTÜ website.)
After running in the Istanbul Marathon for years, I’m participating in the Melbourne Marathon this year. In order to provide some support to Children’s Cancer Instıtute, I am running 10km, If you would like to support this campaign, you can donate as much as you want or as much as you can safely from the link below.
I am trying to fundraise $700 to help Children’s Cancer Institute find a cure for childhood cancer.
Please donate now, it only takes a minute and any money you can give (no matter how large or small) will go a long way to change the lives of kids with cancer.
There is usually no known cause for childhood cancers, the treatment can go on for many years and it puts an enormous strain on family life. So I am conquering Nike Melbourne Marathon for the children who are diagnosed with cancer. Together, we can help find a cure for childhood cancer and create safer, more effective treatments.
Please DONATE NOW and support my challenge to change the lives of kids with cancer.
The documentary “Papatya Çocuk” (Daisy Child), produced by TRT’s in-house production team and telling the story of a child with albinism, had its first television screening on March 14, 2021.
So, what’s my connection to this documentary? Toward the end of 2019, I was working abroad when I heard that TRT was planning to include the story of a child with albinism in one of its documentary series. They wanted to film the story of Irmak, one of the wonderful children of my dear friends Gülay and Murat Vural. Since we had been approached before for different documentary and visual projects, I initially took a cautious approach as usual. However, after a long and sincere conversation with one of the directors, Müge Müftüler Baygeldi, I was convinced that this project would be handled with the care, dedication, and quality worthy of TRT. So, I gladly agreed to contribute.
The first filming took place in İzmir, featuring Irmak and her family. Later, in early 2020, another part was filmed with me in Istanbul. Then, as we all know, the pandemic hit, which caused a long delay in the completion of the documentary. Eventually, we had the chance to watch this beautiful film.
To me, Irmak and her wonderful family are a truly powerful example of what it means to portray the life of a child with albinism and the vital role of family support. Seeing them chosen as the main characters made me genuinely happy.
My heartfelt thanks go to Müge Müftüler Baygeldi and the entire team for addressing the topic of albinism with such humanity, hope, and clarity — and for turning it into a documentary filled with dedication and love.
I truly hope everyone enjoys it.
Tag:
Date : 14.03.2021 Media: Television Presenter: TRT Belgesel
You can find the details of recent event that I have attended as a representative of Albinism Association. I participated “Erasmus + sports event” between 6-8 March, which is orginised by Albinism Society of Spain ( ALBA ), on behalf of the Albinism Society Turkey. Before I give information about what was done in this event, let me give a brief information about the Erasmus + project.
Erasmus + is an organization that supports the European Union, especially young people in the European Union countries to come together and engage in sports / cultural activities. Some of you will remember “Erasmus” as the name of student exchange program, in particular achieving short-term as a chance to study in universities abroad from Turkey. Erasmus + is a similarly supported program. The Spanish Association applied to a sports project last year and got a budget for the activities after the approval of the project. One of the activities mentioned in this project application is the event held in Valencia, which I mentioned above. Of course, this project was supported by various meetings and studies before the event. With a questionnaire that we shared with you on the Facebook page of our association, asking what kind of sports people with albinism interested in different countries, It will be shared with the European Union and the relevant countries by evaluating what additional activities can be done to increase the sports effectiveness and will evaluated in the final report of this project.
In this context, between March 6-9, people with albinism and interested in sport, from various countries in Europe, came together in Valencia, had various sports activities, and had the chance to do sports and discuss together. I can briefly summarize the program as follows.
Presentation
After settling in the hotel on the evening of the first day, a presentation, with information about both the project and their work, was made by the ALBA team. After this presentation, we had a chance to visit Ana Yturralde ‘s photo exhibition. After a period of time with impressive photos of albinism youth, dinner in Spain with American Hamburger 🙂
Sports
Wall climbing : Climbing using hands and feet to a pre-prepared and specially arranged vertical wall system that requires concentration, strength and coordination skills. The success of people of all ages with albinism in this sport was very pleasing. Although it is a sport where visibility is also important, we encountered successful athletes. Obviously this was the first time for me, but I liked it very much because of my interest in this kind of sports. After those quarantine days are over and life begins to return to normal, I plan to deal more with this sport.
Tandem bicycle : Unlike the normal bicycle that you can ride alone, interpersonal coordination is very important in bicycle driving used by two people. In this activity, there was a person with albinism and a non-albinism person on each bike, and cycled on approximately 10 km of route. Although cycling is already a sport I have done with love, I also took the tandem bike for the first time. Riding in Valencia’s magnificent Turia Park was more enjoyable than sports . It is inevitable to be jealous of those in this city.
Spinning : This time a paced ride was held inside accompanied by a trainer. In this sport, strength and fitness are extremely important. Although I can not provide continuity to the individual sports in the gym, which is generally known as fitness, spinning was my most preferred activity in gyms.
Swimming : Probably one of the sports we are all familiar with. An activity was held together in the indoor swimming pool without competing. Since I did not prefer to get wet, I preferred to sip my drink at the cafe outside during this event 😊
Bowling : It can be argued whether it is a sport but it is a sport where the sight meets the arm strength. If you have the talent, it is quite possible that you will be able to take the upper ranks by passing the non-albinism individuals. Unfortunately, although I took a tough competition for a long time, I moved to the second after Dutch team at the last minute.
Athletics: Amateur athletics sports were held on the tracks where Spain albinism championship will be held (cancelled due to the corona) 1 month later, accompanied by professional trainers. Various sports such as long jumping into the sandbox, obstacle race, shot put and javelin throwing, disc throwing, and short distance running were done together with individuals with and without albinism.
I am happy to be a part of TURKEY ASSOCIATION OF ALBINISM as taking part in organizing this event, the occasion to join our young people here. Therefore, our ties with other associations in Europe are getting stronger, far ahead of albinism awareness of our work in Turkey; in Europe and even in the world; this studies contributes in creating awareness of people with albinism in Turkey.
See you in new activities.
Video shared by ALBA Association on their own sites:
My first Instagram live stream was on air. I have been on newspapers and televisions before, as you can follow from the “Me on Media” series, but for the first time, I participated in an Instagram live broadcast as a guest. I admit, it is now the norm for today, maybe it should have happened before, but it was excited for me since it was my first experience. I was the “Eid Mubarak” guest of live conversations series with new guests every week in order to preserve communication with members and inform them about Albinism during the coronavirus period. It was very nice to meet followers by having a pleasant conversation with the Vice President of the Association, Hakan Çalışkan, for about 45 minutes. Unfortunately, the broadcast has no recording, so those who missed it, won’t have a chance to watch it, but maybe we’ll meet again in new live streams.
My first Instagram live broadcast has taken place! As you may have seen in the “Me on Media” series, I had previously appeared in newspapers and on television — but this was my very first time joining an Instagram live session. I admit, it’s quite a normal thing nowadays (and perhaps it should have happened sooner), but being my first made it an exciting experience for me.
I was the holiday guest of the Albinism Association’s weekly live talk series, organized during the coronavirus period to keep members connected and informed. Together with the association’s vice president, Hakan Çalışkan, we had a delightful 45-minute conversation — it was wonderful to meet and chat with everyone.
Unfortunately, there’s no recording of the session, so those who missed it won’t be able to watch — but who knows, maybe we’ll meet again in a future live broadcast!
Ali Şengöz Arup, Associate, Europe Rail skills Leader, Design Manager, Turkey
Abstract
Although it is new to everyone, our daily life is now full of Covid19 news. “Stay Home” motto limits our freedom of movement, reducing our serotonin level. Many people, who used to travel a lot for business or leisure, can now only dream of visiting new destinations. Social media now broadcasts bakery and cooking stories instead of seaside views. In addition to social disrupting impact of pandemic, the effect is much more catastrophic for the transport sector. Railway companies are struggling with financial problems due to reduced passenger and freight services while still having to pay for fix costs and trying to find a way out of this crisis. In this short article, reader can find a summary of recent news about the impact of Covid19 on Railways, and suggestions, open to discussion, about possible solutions and the concept of “new normal”.
1. Introduction
Covid19 or Coronavirus is now the most known expression in the world. It already changed the way we live and still the future is not clear, or “new normal” is not defined yet. As “human life” is always top priority; the last few weeks have been focussed on emergency response to the Covid-19 centering on minimising loss of life, search for a vaccine or a medicine and lock downs to protect people from themselves. Meanwhile society has been adapted to the situation of focusing on health care system, adopting themselves to the new extreme situation, working remotely and staying at home. Each sector is dealing with negative outcomes of pandemic and trying to find an exit scenario keeping in mind the protection of people’s life. But what is the next challenge? It is recovery. In order to understand better, how we will deal with pandemic in railway transport, it is important to understand how we are impacted and what has been faced during this period in which almost no one was truly prepared.
First cases of coronavirus in Europe were discovered on January 24 in France followed by cases in Germany and Italy. Countries in continental Europe started to reintroduce border controls after coronavirus cases rose quickly in Italy and Germany. In the beginning, citizens from high-risk countries were not allowed to cross borders to other countries which started the era of travel restrictions.
Since March, Europe has been subject to movement and social distancing restrictions, and the economy is at a standstill in many sectors,
In this short article you’ll find how railways are impacted from Covid19, what was bad, and what was good, and finally based on the observation of the current situation, what will be waiting for us in railway transport in the near future. What helped? What hindered? This article is structured on several news available online along with additional research, which are listed in references section. Thus, a long reference list is available at the end where it will be possible to find more detail about the news that is mentioned.
2. Current Situation
Air traffic has been discussed more on media, but rail traffic has also been impacted seriously. Upon the sudden increase of cases especially in Europe, almost all international traffic is suspended except some freight services. Before going deeper into details, general figures about rail transport before pandemic are given below.
UIC reports in 2017 (based on the data provided by their members) global Rail Passenger transport – Passenger-kilometres (millions) is 2.8m, dominated by Asian and Ocean companies (%80), and Rail Freight transport – Tonne-kilometres (millions) is 9m which is almost equally shared by Russian, American, Asian and Ocean Companies with a small contribution of others.
Rail Passenger transport – Passenger-kilometres (millions)
Rail Freight transport – Tonne-kilometres (millions)
If we check the information for Europe from Eurostat, passenger number is 472m (not passenger-kilometre stat) in 2018 with a continuous increase trend.
As expected, due to its sustainable nature and efficiency, demand is increasing for rail transport both in freight and passenger. Or at least “was”.
Let’s see what has happened till now and discuss what is expected to be.
3. What has gone bad for railways
It is obvious that most negative impact is the suspension of services which resulted in loss of income and loss of employees to reduce salary costs while fixed expenses has not changed much. These 2 have both financial and also social impact due to job loss, on transport companies. Not only big markets like China, America or Indian (IRCTC) [3] laid off their employees, but also other small companies like Norwegian VY [4] also went for cut of staff. Many companies all around the world like Leo express [5], New York Subway MTA [6], Sound Transit from US [7], declared that their demands were reduced around %5-%20 which is not practical to operate. However, as transport is a critical service that governments or even private companies banded with their contracts, need to keep their operation going. Transportation is a constitutional right and is not possible to shut down simply because of financial problems. This is why it should be considered both as a commercial problem, but also a public service continuation.
One of the main factors that increase the risk of crisis is the fixed costs such as salaries, infrastructure costs, rents, maintenance etc. Similar to Airlines, budget train operators started to be seen in the railway operation market. This was beneficial for increased frequency with lower rates (may be by sacrificing comfort) but, due to the high infrastructure costs and unknown future, some companies like Flixtrains announced not to invest to new lines [8]. Especially during the recovery phase of railways after pandemic, additional operators will be needed to run on rails. Similar commercial circumstances arise in Germany [9] and other countries as well. In this reference you may find what the main costs are for railway operations and the definition for the “fixed costs” [11]. Short-term variable costs can be reduced by some measures during crisis, but the reduction in fixed cost is considerably low. Proposed measures to reduce fixed costs are the ones that you are familiar from news like cutting services, combining trains, slowing train running speeds to conserve fuel, reducing maintenance costs as a result of reduced mileage-run of train cars and locomotives.
Figure 3 Traditional view of a company wide rail freight cost structure
Even the cargo and logistics demand is increased especially due to online marketing, number of carloads transported by railways (and by all means of transportation) is reduced. “Since 1988, when our data began, total U.S. rail carloads were lower than they were last week only during a few Christmas and New Year’s weeks, when rail operations are seasonally low.” said AAR Senior Vice President John T. Gray [10].
Figure 3 Traditional view of a company wide rail freight cost structure
With the need to mention that US is the best place to find relevant data for railway operations during pandemic, this may be the case as there are more private companies compared with Europe especially. If you want to investigate “real-time true impacts of the COVID-19”, FTR prepared and online tool to share data including recovery index [12]. The Index currently shows that rail volumes in the intermodal and carload sectors “are likely near the bottom,”. “While a recovery is expected following economic restart, the length of the recovery is largely unknown,” FTR says. This unknown future is the “risk” that experts focused on these days.
When it comes to Europe and scenarios for recovery; Rail market analysis specialist SCI Verkehr has published an assessment of the impact of the coronavirus pandemic on European rail traffic, which predicts a 30-50% drop in passenger traffic for 2020 and a slow recovery. They produced three scenarios: rapid recovery, disrupted markets, and the renewed lock-down. SCI does not expect a recovery to pre-crisis levels until 2023 or 2024 with a reduced demand of %40 for passenger and %20 for freight. Two interesting figures are given below.
Up to now, we have seen several known issues about negative side of pandemic regarding railways, including financial problems and unknown future. Here you will see some good news which may bring you out of pessimistic way of thinking.
It would be expected that infrastructure owners may plan to suspend infrastructure investments, building new lines or large maintenance schemes. On the contrary, we received several good news that tenders are not cancelled and new contracts are awarded. These include; Hong Kong Tung Chung Line metro extension [14], UK’s confirmation of ‘Notice to proceed’ on High Speed 2 [15], submittal of New Munich tram application with an assumption of construction to start this year [16], announcement that Rail Baltica Project is not to be interrupted [17] and opening of a new extension for Sydney Light Rail network [18]. In addition to the design studies which can be completed remotely without interruption, construction works are also not suspended and new tenders are launching. This is also important for the economy of countries as construction market is the lead market for economies.
During first stage of pandemic, some companies even helped to support fight with Covid19. Spain, Renfe and Talgo modified high-speed trains to transport Covid-19 patients [19] which also proved the importance of railways during global crisis, Austria found short term and quick solutions to keep operation alive by granting temporary PSO to ÖBB and Westbahn for Vienna – Salzburg route [20].
Certainly, several countries started to support railway companies by funds and credits or speeding up payments. EU approved an investment package worth more than €1.4bn for 14 large scale infrastructure projects in several European countries [21] which was a life line support for the market. New Zealand speeded up payments [22] as well. German government estimated that the financial impact of the pandemic on DB could reach between €11bn and €13.5bn by 2024 and the government is considering funding around 80% of the increased costs [23]. British Government also agreed a s £1.6bn funding package for Transport for London, a self surviving entity which is not longer able to cover expenses as revenue has dropped drastically [24], but surely, no one should foresee bankruptcy of London Transport and shut down.
Crisis can turn out to be opportunities for those who can plan and set their position correctly. Many operators and infrastructure owners changed their work plan and focused on works, which is difficult to complete while trains continue to run frequently. Having sufficient resources during reduced operation, can be a chance to upgrade the infrastructure [25]. BART also puts small business to work on railroads to keep working during pandemic [26], which keeps people busy and injects cash into the market.
Italy started to recover after having had the lead in number of patients during the pandemic, in Europe, for several months. Italo announced that its high-speed trains would soon be providing a new direct link between Turin and Reggio Calabria in the south, starting from June 14th [27]. They will provide safety kits to the passengers as a measure of protection. China as the epicentre of global pandemic, announced increase in Europe rail freight services [28] and introduced new high speed services [29]. In addition to the pioneering freight service recovery, countries including Belgium started to restore all passenger services too [30]. However, it is important to plan staged recovery as international travel has still not %100 recovered and not expected to do so shortly.
Rail industry also received good news that the growth started upon restarting activities from several locations [31][32].
5. Possible plan of actions
Businesses are trying to survive during this tough period, what governments can do (in addition to cash/ loan support) is to provide required PPEs and ease on paperwork/permits/policies to keep business going. Managers and workers(employees) should not waste their time on obtaining masks or health equipment, and try to cover those expenses. Governments should support these markets with these tools so that people can work, receive their salaries and feel safe. Additionally, managers can focus on building new strategies and altering their products.
Effective and well established asset management system enables operators to decide on maintenance works to be prioritised and staged during reduced traffic and even on halted schedules. Railways can accomplish more with less resources if they can better manage rail information and harness the vast amount of existing rail corridor data in a prioritized plan, assign the work, and monitor the execution and results with technological applications. This system should also be interconnected globally for better coordination.
Passenger trains: Biggest discussion is how to deal with disinfection measures necessary for rail travel. While airlines already denying to allocate a free seat to leave social/physical distance between passengers, should we expect this from rail operators? It is not possible to operate with same rates and reduced passenger numbers. Either ticket fares are expected to be increased (which will naturally reduce demand) or passengers are expected to protect themselves with proper PPE’s and take a certain amount of risk. This is an unknown problem and I believe solutions will evolve by trial and error approach.
As Italy is proposing for High-speed trains [27], companies should get prepared to deliver “Safety Kits”, which should be long planned and logistics should be resolved before taking action as it is not easy to find proper safety kits..
Changing modes of transport should be discussed broadly between operators and at governments level. Considering French approach to support Air France with a restriction of not flying shorter distances (letting them to be handled by railways) [33], this may increase recovery speed for both transport modes. This can also initiate the discussion on “new normal”. The concept of “The plane should no longer be a means of transporting [people] in one hour which could be done at lower cost of CO2 by train in two hours or two hours 30” can be globally accepted.
Freight: Rail freight services which hold an important role on transportation, continued to operate even during the peak days of the pandemic. However, long delivery duration for railways, is still a barrier to compete with air freight. Connection between China and Europe takes about 18 days of travel. [CK1] Investments should continue improving infrastructure to reduce cost and increase speed. Additionally, time lost on border controls is on critical path for delivery. Several days can be saved by digitalizing security checks.
There is a need to increase number and capacity of Rail Ports to connect goods transported by rail to the inland. Flexibility can be achieved by introducing rail transport not only for massive large loads but also serving for huge small cargo demand like Amazon or Aliexpress.
6. Conclusion
Starting from the beginning of global pandemic, Railways are impacted seriously as other modes of transport. During the first few days in which the means of dealing with the pandemic were unknown, dire news were received each day. First days, as it was not known how to deal, bad news were heard each day. However, as companies and governments started to comprehend the situation better, they started to react and brought themselves to put more solutions on table and kept railways alive. Some consequences of negative impacts still remain, but railways are trying to recover. As the recovery is not expected to be quick, it is important to keep the alert level high and continue to look for innovative changes in the system without resistance. Existing known tools can only serve for a short period but there is need for further changes which can be referred to as “new normal”.
This pandemic and short examination of impacts on railways revealed the importance of “Resilience” as it is not always possible to be prepared for shocks and stresses but planning for recovery is lifesaving. As a result, it can be stated that transport system and companies should concentrate more on resilient organizations which is the key to fast recovery.
Since 2007, I had the chance to work in a wide range of railway projects. One of the most exciting but at the same time the most challenging aspects of civil engineering is that it consists of a wide variety of disciplines and has a chance be involved in wide variety of projects from the nuclear power plant to the airport, from the railway to a simple single-storey house. Even railway itself is a multi disciplinary subject. In this seminar, I simply tried to convey what it contains in general terms and what awaits railways in the future.
With this seminar organized by Koray Kadaş, the Board Member of the İMO Ankara Branch, we had the chance to share information with the members of the İMO in Ankara and then through the internet. In the seminar and presentation, you can find the answers to the following questions roughly.
Content
How was the development of railways?
Introduction to railway design. How to determine the necessity of railway?
How are Route and Geometric Properties determined?
What are the infrastructure types? (Rail, sleepers, ballast, sub-layer)
What are the types of superstructure? (bridge, tunnel, station)
Which standards are used?
Future of Railways. How will Railways be in the Future?
Log
Date: 13.10.2016 Media: İMO Ankara Teknik Seminerler
In August 2014, Bianet, an online news outlet, reached out to Burcu and me with an interview request. The topic was intriguing — bringing attention to lesser-known aspects of albinism and correcting common misconceptions. It was a great opportunity for us to accurately represent both the Association and albinism itself.
Unlike our other newspaper features, there were no glamorous photos this time — mainly because the questions and answers were exchanged via email and Burcu’s participation was limited to phone calls. Still, it turned out to be an insightful and informative piece.
One in every 17 thousand people in the world lives with albinism. Albinism Society, bianet of the difficulties faced by albinos in Turkey, told fancied wrong and right about albinism in demand.
Unlike common belief, albinism is not just a skin disease. People with albinism, known as “albino” among the people, start to experience vision loss over time. Due to this loss of vision, the state is considered to be between 40 and 90 percent disabled.
One in every 17 thousand people in the world lives with albinism. In Turkey 3 thousand – four thousand albinism is estimated to be individuals.
Adults and children with albinism albinism is a group founded in 2012 by the family and the first social platform that makes regular studies on albinism Albinism Society in Turkey, the society aims to raise awareness on this issue and the state. Society also all the developments on this issue, follow the research, diagnosis and treatment also is conducting studies for the work to come to Turkey.
What is albinism?
Albinos in cinema
In the screen, Albino characters are always reflected as evil and cursed characters. For example; The twins in the Matrix series are albino. Spartakus actually succeeded in defeating an albino gladiator and found a place in the gladiator world. The evil guardian in Dan Brown’s book and then in the movie starring Tom Hanks is albino. However, people with albinism are not bad and cursed as they are reflected, but their intelligence choices are generally above average and naive.
We talked with President of Albinism Association Burcu Çakır Keskin and Vice President Ali Şengöz , who is an adult with albinism , about social rights, state policies and the activities of the association.
What is “albinism”?
Albinism is basically a genetic condition. Each creature has pigments called melanin, which gives it its color. Pigments are the molecules that make up the colors of all objects and can be of different colors depending on the genetics of the creature. In the person and creatures with albinism; This melanin pigment, which gives color to the skin, hair and eyes, is either absent or very little due to a genetic deficiency.
Albinism also depends on heredity and passes from one generation to the next with genes. The gene responsible for albinism; it is the gene that carries the knowledge of how to produce melanin pigment to the eyes, skin and hair. Genes related to albinism also come from both mother and father, and both genes related to the production of melanin pigment are not working properly.
Albinism Association
As far as associations in Turkey “albinism” the first social platform built on. Was there any other community or initiative before 2012?
An association called TEALDER was founded in Ankara before; but it was not able to operate. Thereupon, the Albinism Association was established with the participation of a group of adults with albinism who came together based in Istanbul and families with children with albinism, unlike the institutional stage of the previous association.
Ali Şengöz, Vice President of Albinism Association
What is the purpose of the Albinism Association?
We want to improve both the diagnosis and treatment work and social awareness are trying to come to Turkey. We want to help individuals with albinism or their families who need help from social pressure, incomplete information, inadequate attention, or financial reasons.
One of the biggest shortcomings is to make studies to close the gap in the Turkish source book on albinism; By organizing informative seminars in education and health institutions, raising awareness on this issue is also among our goals.
For example, we are releasing our book “Raising a Child with Albinism”, which will soon be the first printed source on this subject and whose income will contribute to our association. We aim to respond to all known mistakes about albinism.
The state has no policy on albinism
Wrongs related to albinism
* Individuals with albinism can go to the sun by taking the necessary precautions.
* The eyes of individuals with albinism are not red, but blue or gray. It looks like red in the flash light.
* Albinism is not a disease, but a genetic condition.
* Albinism occurs due to genes from both mother and father. It is not sufficient for one of the parties to be a carrier.
* Children of a person who marries an adult with albinism, who is not a carrier of the gene for albinism, are carriers but not albinos. Because albinism is a recessive gene.
* Children with albinism grow just like other children.
* Not only in humans, albinism is seen in all living things.
* Eye problems experienced in albinism cannot be corrected with the use of glasses. Play in the eyes is called Nistagmus and occurs as a result of deformation in the eye muscles due to the sensitivity to light. * There is no cure for albinism yet. It can not be diagnosed by pregnancy tests.
* In school period, they need support from less vision. Book, exam papers, printed with large font. If they are supported with assistive devices such as handheld binoculars, telescopic glasses, school success will be at a normal level.
* If they do not regularly use dermatological products, sunscreens, they are more likely to get skin cancer at an early age.
What kind of problems do individuals with albinism face in social life?
Since school age, they start to experience various problems due to differences in their appearance. It is possible to talk about problems due to low vision and financial difficulties in accessing auxiliary devices. The fact that there is no rehabilitation study other than a few centers on this subject also creates problems. Although individuals with albinism have to use dermatological sunscreens for skin protection, social insurances are not comprehensive enough to meet this need.
In addition, it is possible to talk about families with children with albinism, lack of information about the situation of their children, lack of information and psychological support, which is important for the first period. Difficulties faced by children in schools; Failure to see the board from afar and the lack of adequate support for these children due to lack of information are also problems.
How do you evaluate the policy of the state towards individuals with albinism? Is a solution produced by the government to complement the shortcomings you mentioned?
In fact, it is hard to say that the state has a policy on albinism to date. As we mentioned, children with albinism need to receive special help in schools and receive sunscreen assistance under social insurance. He also needs full support for sunglasses, optical devices. However, there is currently no study on these issues. Nevertheless, we hope that the state will find a solution by drawing attention to these issues with the activities of our Association.
Is it possible to talk about policies that support individuals with albinism in the world?
Especially in America. When a child with albinism is born, vision therapy for the child and psychological support units are assigned to the family. Before the children go to school, how to help them at school is planned and a suitable environment is prepared for him. His books are printed with larger fonts, and exams are presented in the same way. The rights of adults with albinism are protected by associations and social platforms. Fuses provide their auxiliary devices and cover the costs of sunscreen. Our application petition must have been sent to SGK. We demanded that the sunscreens, which are vital for individuals affected by albinism, are provided by SGK with a report and for free. Many scientists conduct studies on diagnosis and treatment both in America and Europe, and these studies are supported by state funds.
National Albinism Conference will be held
Albınm Association President Burcu Çakır Keskin
On September 7, you organize the 1st National Conference of Albinism. A conference you plan to continue in the coming years?
The main purpose of organizing the conference is to bring together individuals and families who need information on this subject, to enable them to share their own experiences and to receive technical information from experts. In addition, telescopic glasses, sunscreen, Turkish source book, etc. We aim to inform individuals and families by exhibiting equipment and resources on the subject. This conference is a first in Turkey, we intend to continue in the future by providing international participation.
Can you talk about the subtitles in the conference? What will be discussed and discussed?
We will give general information about the working areas of our association, and we will give direction to the activities of our association in the coming period by taking the opinions of the participants. Our adult friends will provide basic information about albinism and will address the issue of living with albinism. A lecturer from Hacettepe University will be our guest about the educational needs of children with albinism. We will evaluate the eye problems with an operator doctor. While an expert on information about assistive devices and rehabilitation studies will inform the participants, we will have a section on albinism and disability discussions.
We will share the information we got from the European Albinism conference that we attended in April 2014 with all the participants, and finally, a photographer who studies photography on Albism will be giving information about his work. On this occasion, the participants will also know each other and exchange information.
Can you tell us about the upcoming events of the Albinism Association? Are you planning an international event?
We started to appoint regional representatives right after our establishment. Through these representatives, we aim to organize meetings not only in big cities but also wherever we can reach. Bringing together individuals with albinism and families facing this situation is among our primary goals. We aim to organize our national conference annually or biennially.
Our well this year and we join our association on behalf of Turkey, made at the international level Albinism 2. The European Conference was held with Spain Albinism Society organization. The next conference was decided to be organized in 2016 by the Italian Albinism Association, and after our association’s work has reached a certain level, we would like to host this conference.
“We need all kinds of manpower for today”
“We need all kinds of manpower today,” says the Albinism Association, calling for volunteers who want to work with them.
You can contact the Albinism Association from the Albinism Friends group on Facebook, or by sending an e-mail to bilg@albinizm.org.tr . (MF / MC)
Following our 2014 feature in Akşam newspaper, the wonderful trio returned once again — this time in Milliyet. Gracing the front page of the Sunday supplement, the team once again shared their heartfelt perspectives and personal stories about albinism.
Log:
Date : 21.06.2015 Media: Milliyet Gazette Author : Metin Uyar
This past weekend Albinism June 13 World Day was celebrated for the first time in Turkey. Albinism Society of Turkey, Antalya JCI Young Leaders and Entrepreneurs Association of Turkey with Antalya Metropolitan Municipality’s motto organizations held in Antalya in cooperation “Albinism Awareness Register Support Register with your presence” du.
The Albinism Association, established at the end of 2013, is also working to raise awareness on the issue. We met with Board member Moti Romi, Gizem Dönmezer and Ali Şengöz to talk about “living with my albumin”. I immediately noticed the problem of seeing with albinism. Romi, whom I met a little earlier, searched for Dönmezer and brought his cell phone close to the eye. Very lively people wouldn’t have thought that I could laugh so much when talking about a genetic difference. Dönmezer said that my corner was a tight follower and said, “Why are they white? You will throw the title, for sure. ”
“He thought me a ghost”
– How would you express living with albinism?
Gizem Dönmezer: I am used to it now, but there were times when I had a hard time. Since the color of our skin is different, we get different reactions, looks, and we are excluded. There are also those who think that it is an infectious disease and does not want to approach us. I just came by metro. A woman sat next to her with her child. We smiled with each other with the boy. The woman turned the child’s head. He turned his back to me and said to his wife, “Oh, don’t talk to people like that, the child’s psychology will be impaired.”
Moti Romi: We also have tragicomic experiences. We went to a friend’s house at a Christmas party exit. Two friends ahead, I knocked at the back. When the person working at home opened the door and looked at us, he said, “Oh my God,” he closed his face in fear. First, we were worried that something happened to the woman. It turns out that when he saw me in the back, he thought he was a ghost and was scared. A friend from Albinolu thought he was a stone doll and was looking for a price. Also, “Why are you like this?” When he got the answer to the question, “I was immersed in bleach, I drew it,” there are serious believers.
Ali Şengöz: I don’t define albinism differently, I see it as something like being a blonde or a brunette. When looking like this, the people around do not differentiate either. The only thing that makes our life difficult is the vision problem that albinism brings with it.
“I finished the university with binoculars”
– How did the vision problem affect your school life?
Moti R .: When I was in high school, there were no telescope glasses. One day I noticed that I was very comfortable with binoculars at home. I went to class with binoculars the next day. I looked, I see it very comfortably from the back. Despite the fact that the doctors said to my family “Your child cannot read,” I completed my high school and university life with binoculars. When I was in elementary school, I used to go to the beginning of the board and keep in mind what I wrote and returned and wrote in the notebook. I often heard the “Moti get off the board” reproach from my friends.
Gizem D .: When I asked my name at school, I was saying “Albinoyum”. First I said this was not contagious, then I was telling myself. When I first entered high school, we met new people, two days later, no one started talking to me. Stop a person and say, “Why aren’t you talking to me?” I asked. “I greeted you, you did not answer me, and I am not talking to you,” he said. However, it is impossible for me to see a person who greets me from afar unless he calls out.
What arrangements should be made for everyday life for albinism?
Gizem D .: The color of the carpet and furniture should not be the same. If the carpet is white, the furniture should be red.
Moti R .: If a bright line is placed on the stairs we go down to the subway, which will allow us to distinguish it to the end of each ladder, we will move much more comfortably.
Gizem D .: We have a depth sensing problem. As I got off the sidewalk, I thought it was a bigger sidewalk, and my foot crashed very hard and my waist fell into the void. I also miss bus all the time. Because the bus goes until I see the bus. An audible sensor system telling that the bus is arriving should be placed at the bus stops.
What does the Albinism Association do?
Gizem D .: Our association is a very new association founded at the end of 2013. As volunteers, we translated a foreign book called “Raising Children with Albinism ”. With the support of H2O Publishing, our book took its place on the shelves. While this is a very useful resource for families with albinism, people can support our association by taking the book.
Moti R .: Last year we held the 1st Albinism Congress in Ankara. Here, both families and albinis shared information and contributed to social awareness. We also discussed our problems here. For example, there is a serious demand by SGK that sunscreens and telescopic glasses are provided free of charge to albinism.
EXPERTS TELLED
“They must be protected from the sun”
Assoc. Dr. Emek Kocatürk Göncü (Okmeydanı Training and Research Hospital / Dermatology)
-Albinizm is a genetic difference caused by the partial or complete absence of melanin pigment, which gives color to our hair, skin and eyes. There are four main types of this problem, which can be seen every 20 thousand and affect all races. For most types of albinism, both mother and father must have a defect in the gene associated with melanin pigment production. Depending on the type of change in the gene, albinism’s hair can be white, its skin pink or its hair and skin color normal.
-The lack of melanin pigment makes a difference in appearance and causes skin and vision problems. These people are extremely sensitive to the sun, so they are prone to sunburn and skin cancer. They must be protected from the sun.
“90 percent can be diagnosed by eye examination”
Professor Dr. Şule Ziylan (Yeditepe University Faculty of Medicine, Department of Eye Diseases)
-Albinizm is not always seen with hair, brow whiteness and skin pink. There is also ocular albinism that holds only the eye. But in every individual with albinism, we see that the colored part of the eye is very light blue and the red reflection in the area behind it is very high. For this reason, 90 percent of albinism can be diagnosed with an eye examination, usually ophthalmologists are already diagnosing it.
When there is no color pigments at the point of view of the eye, vision deficiency appears. The rate of seeing albinism is 10 percent, they cannot see people and objects far away clearly. Visual quality is tried to be enhanced with glasses and those with higher levels are trying to increase with binocular glasses. Surgical methods do not work very well .
Since there is no pigment cell protecting against light in the eyes, the eye is disturbed and damaged by light. Albinism must wear dark glasses and a cap.
The year was 2014, and this time the magnificent trio made it to the newspapers. We were featured in the Sunday supplement of Akşam — Gizem Dönmezer, Moti Romi, and myself. The article was accompanied by fun photos we took in Levent Bazaar, Istanbul, and offered yet another opportunity to raise awareness about albinism.
Just before this feature, in August, Bianet had also published a story about albinism. This time, it presented the perspectives of three young people with albinism, each sharing their unique outlook on the condition
Log:
Date: 26.09.2014 Media: Akşam Gazetesi Author: Sibel Ateş Yengin
His hair is white and his eyes are transparent. In fact, we have no difference other than his colors. They’re just Albuminism. While some people are exposed to negative behaviors in social life, some Hollywood movies also feature them as bad characters in their stories. “We are one of you, we have no difference. We just came together with the President of Albinism Association Burcu Çakır Keskin and members of the association with albinism, and they talked about albinism and being an individual with albinism.
ALBINISM FRIENDS Our association was established in 2013 for individuals with albinism and families with children with albinism. We also have a facebook group called ‘friends of albinism’. The family with a child with albinism finds us and asks what to do. We connect, we organize meetings. We came together in Istanbul and Isparta. We started to provide regional representations to volunteers and people associated with albinism. We have representatives in Adana and Isparta. We held a conference in Ankara. Experts of the subject told about albinism. A friend of METU graduate has organized the METU Alumni Association. “How did you do it for free? I guess you are a very rich association. ” However, we do not have much income. Created by volunteers. We believed and somehow it happened. We were also invited to the European Albinist Days as an association. We went with our own means. We were very pleased because associations and scientists from many different countries of Europe participated. Experts gave information about the skin, eyes and social problems of individuals with albinism. We talked about what kind of benefits we can bring each other. In one session, young people with albinism spoke about their problems.
I HAVE BEMBEYAZ KIDS
As soon as my son was born, I took it on my lap. I was facing a white boy. We looked at each other with my wife and ‘Could it be albinism?’ we thought. My wife had friends with albinism at university, but I had never met. I had no knowledge of this subject before. For me, they were blond people. We started to be informed with my son. Our research is still ongoing. Because the information provided by the doctors is very insufficient. “What will I do, how will I look, what might he need?” you say, but nobody even guides you properly. We learned that our child had albinism as a result of a pediatric ophthalmological examination. “Your child has albinism. You will protect it from the sun, bring it to an examination every six months ”. Since albinism carries the same gene, it is more common in consanguineous marriages. We are not related to my wife. “Your chances of having this child are lower than your chances of winning the national lottery,” said our doctor. Because we found each other as two people carrying the same gene in the city of 17 million.
EYES SENSITIVE
The main criterion in albinism is that there is no color in the eye. Your eyes are brown because you have a color pigment in your eyes and your hair is the same. For example, Mehmet’s eyes are transparent, it seems as if it is blue gray, this is due to light reflection. When the light comes from a different angle, the eyes appear red, but this is because the eye is transparent because the blood vessels behind the eye are visible. There are different types of albinism. Some have color in eyes, some have color in both eyes and skin, and some have no color. This situation creates a visual impairment. But this is not like myopia, hyperopia, astigmatism, which we call eye defects. Light-related problems occur in eye discomfort in albinism. Since there is no color, the light penetrates directly behind the eye. Thus, the eye cannot fully complete its development and transfer the signals it receives to the brain. His eyes are very sensitive to light. When you go out into the light of a dark movie theater, your eyes are always experiencing laundry or albinism. Mobility in the eyes is due to the perception of light coming from outside as a danger. The eye muscles are deformed. If you have noticed, someone with albinism will look down. So they have to use sunscreen and goggles to protect them from ultraviolet rays. We can supply some products at a very affordable price through our association. If you have noticed, someone with albinism will look down. So they have to use sunscreen and goggles to protect them from ultraviolet rays. We can supply some products at a very affordable price through our association. If you have noticed, someone with albinism will look down. So they have to use sunscreen and goggles to protect them from ultraviolet rays. We can supply some products at a very affordable price through our association.
THE FILM MAN’S ALBINIZED
There are teachers, civil engineers, computer experts in us. If they manage to overcome their obstacles due to their differences and support their families, they do not have a problem finding a job or social life. There are so many superstitions about albinism. In Hollywood movies, individuals with albinism are portrayed as evil characters. For example, in the movie ‘Matrix’ there was a bad character with twin albinism. So changing this perception and saying, “We are one of you, we have no difference. We are just telling the idea that “the color of our hair and eyes is different.” They have social and physical problems especially in school period. Because they see less, they can often become a mainstreaming student. Because if the disability report is received, the school offers exam paper with large print. The university exam has the advantage of taking the exam in a separate class. If she takes the exam normally, she may not be able to use the time properly because she cannot read the questions easily.
Ali Şengöz:
Whether or not ALBINISM IS LIFE BEAUTIFUL
It’s hard to tell my feelings about albinism, actually, it’s like telling your whole life. Some puts it in the center of their lives, thinks as if it’s the cause of everything, and some sees it as a part of life. I chose the latter. If I am in the middle of the sea and the sea is very wavy, I think about what I can do to navigate between the waves and try to spend my time in the most pleasant way, instead of spending my time asking why I wish it wasn’t. I do not emphasize those around me as “I am albino”. Therefore, none of my friends will see me differently, and neither will my friends see them differently. Of course, the biggest factor in this is the support I received from my family. So far, they have not told me “You can’t do it” for nothing, and if I can’t, I discovered it myself, I gave up myself. Feeling the love of your family is very important in life, so I owe them a lot. Do not think that I talked so easily and my life was very comfortable, I had a hard time as a child. I was subjected to brutal kidding of children, and I remember my sadness when I could not take an exam that I could do very easily, as the writing seemed faint at school. Of course there are also fun stories. Like tricking the beach shopkeepers who do not believe that I am a Turkish by making a tourist number. I discovered the telescopic glasses just before the university exam. It took time to get used to those glasses, my eyes tried to ache, pain, but look at the exam now, I am still 33 years old (I am still reading) (laughs). I translated the Albinism information on the website of the American NOAH association into Turkish, set up a website and published these translations there. Back then, 1999, my website was the only Turkish resource about Albinism, 15 years ago, my only source is unfortunately. I met hundreds of people through this site. I met mothers, fathers, children, I just convey what I see, what I know, but even that was enough. Because all they needed was sincere and real knowledge. If you have loving people in your life, life is good regardless of whether it is albinism or not … I met children, I just conveyed what I saw, what I knew, but even that was enough. Because all they needed was sincere and real knowledge. If you have loving people in your life, life is good regardless of whether it is albinism or not … I met children, I just conveyed what I saw, what I knew, but even that was enough. Because all they needed was sincere and real knowledge. If you have loving people in your life, life is good regardless of whether it is albinism or not …
Gizem Dönmezer:
I DON’T PAINT MY HAIR The sentence I remember most clearly about my childhood is “Our daughter albino so her hair and eyes are like that”. My family, who was always supportive and never felt uncomfortable because I was an albino, would explain people patiently at that time. Although the brutal criticism from my friends during my primary school years made me very sad, my parents were saddened by their persuasive speeches and told me to tell my peers about my situation. I would try to explain that my discomfort was not contagious and that I saw less than them. I started to express myself more comfortably in secondary school, and now I was less upset about criticism, heartbreaking jokes. Before I started high school, my parents said that I could dye my hair if I wanted to, so I would get less attention, but I thought it wasn’t necessary. I never liked the idea of changing my natural state and getting myself accepted into society. I wanted people to get used to the differences and accept me as an individual with albinism. I showed my friends the telescopic and prismatic glasses that I had to use on the first day of my high school life, which I started with these thoughts, by going to the teacher stand, saying “These are my glasses and I have to use it”. With this move, I prevented the criticism and questions that may come from the first day. Family support is very important in this process. Now, as a university senior student, I’m telling people around me to make albinism conscious, not to impose myself. I showed my friends the telescopic and prismatic glasses that I had to use on the first day of my high school life, which I started with these thoughts, by going to the teacher stand, saying “These are my glasses and I have to use it”. With this move, I prevented the criticism and questions that may come from the first day. Family support is very important in this process. Now, as a university senior student, I’m telling people around me to make albinism conscious, not to impose myself. I showed my friends the telescopic and prismatic glasses that I had to use on the first day of my high school life, which I started with these thoughts, by going to the teacher stand, saying “These are my glasses and I have to use it”. With this move, I prevented the criticism and questions that may come from the first day. Family support is very important in this process. Now, as a university senior student, I’m telling people around me to make albinism conscious, not to impose myself.
Moti Romi:
DOCTORS WRONG! I READ I have been living with albinism for almost 30 years. I want to be able to share my experiences with albinism with my brothers and their families who are in the same condition as me. Regardless of whether we have albinism, we all live our lives within certain limits. The important thing is not to get tired of trying to adapt to these limits and sometimes to overcome the limits. It was the first time that I exceeded my limits at the age of 15. Fortunately, my hand reached a large binocular used in the hippodromes inside the closet. First, I watched through binoculars from the sixth floor of our house. Then I took the binoculars and went to the living room and started watching television as far as possible. I don’t remember seeing distant objects so clearly until then. My family was puzzled. Although we visited so many doctors, none of them said that binoculars could be the solution. The next day I went to school with my binoculars. I could see what was written on the board quite clearly. The problem was big, but the solution was just as simple. A binocular was enough to extract the potential I had inside. The doctors, who told my family that I could not whisper in my childhood, were not aware of how wrong they were. While telling my story at the graduation ceremony, I remember the day my family’s eyes were filled. The success I achieved was no different from the success achieved by an individual without albinism. The biggest factor in my feeling like this was my social circle’s evaluations as an individual, regardless of whether I was albinised or not. In this sense, I feel lucky. My advice to families of individuals with disabilities due to albinism or for different reasons; is to prepare their children for life as if they had no obstacles. Let the individuals discover their disability themselves and learn to live with them.
