Newsletter - Summer 2017

Page 1

Message from the Board

IFHOHYP Newsletter Summer 2017 1

IFHOHYP Board President Victor Rehn

Vice President Bowen Tang

Board Member Glenn Strosletten

Secretary Astrid Fejro

Treasurer Daria Panicheva

Newsletter Team

Proofreader Bowen Tang

Editor Irina Ivanova

Editor Ece Saygi

E.Mail Newsletter Team:


Designer Manuel Rohrbach

Index of Contents Message from the Board Victor Rehn

4 Finding your way Bowen Tang

8 Music as an inspiration Arzu Sen

14 Reflections From Budapest Study Session Hanna Mullis

18 IFHOHYP Talks Bowen Tang

20 #Hear2Stay Campaign Plan Bowen Tang

22 Invitation to “Share Your Experiences” and IFHOHYP AGM 2017 26


Message from the Board

Message from the Board

written by IFHOHYP President Victor Rehn 4

Message from the Board

The winter in Finland is long, dark and cold so I was very happy I had the IFHOHYP Studysession in Budapest back in February to look forward to. And boy, what a great experience that was! The fantastic people and informative sessions made for an unforgettable event that also gave the energy to keep going until the days got brighter and longer. Make sure to check out the great IFHOHYP Talks and our exciting Hear2Stay campaign that we took with us from the Studysession, you can find out more about them further into the newsletter. The Studysession team of volunteers, who made it all possible with their amazing work, deserve an applause! If you would be interested in joining our team and aid us in preparing the next Studysession, make sure to reach out to us in the Board. Regarding daytime in Finland, we’ve just now passed the longest day here, called Midsummer in the end of June, so from here on the days will get shorter. I wasn’t home to experience it for I was busy having a great time in Norway. The Norwegian hard of hearing youth organization (HLFU) kindly invited IFHOHYP to take part in their summercamp, thus making it an international summercamp during Midsummer! It was an actionfilled camp, in fact I think my muscles are still a little tired from it, Join us for anothwith lots of nice people who made it an amazing experience. The HLFU team did a er great IFHOHYP great job to make this possible for us and experience where deserve another applause for their efforts! we shape our near They made the time, until the next camp, fly much faster than I expected back in future together! September. The international summercamps are popular, more leisure and social happenings and there will be another one coming up in 2018 in the Netherlands hosted by SH-Jong. For those of you who’ve yet to experience one and for those who can’t have enough of them, clear your summer schedules and stay tuned for the ”Save the Date”! If you think your country is a great location for an in5

Message from the Board

ternational summercamp 2019 or beyond, we in the Board are always interested in hearing about new possibilities. ☺ The summer in Finland is short, bright and cold so I’m happy I have so many new good memories and international friendships to warm me thru mosquito infested cool evenings. But Finland is not something I want to keep to myself, that is why IFHOHYP is arranging its next Annual General Meeting and ”Share your experiences” weekend here in Helsinki, October 26–29th 2017. Reach out to your national organization for more info and about the possibility to represent them at our AGM. Join us for another great IFHOHYP experience where we shape our near future together! Also we’re in the process of renewing our logo and website, there will be chances to give feedback on the work via email, please give feedback so we can give IFHOHYP a suitabe new fresh look at the AGM! Have a great summer & see you all in October! Victor Rehn IFHOHYP President


Message from the Board

IFHOHYP exists for learning from each other empowering the community social networking advocating for inclusion Do you want to be a member of IFHOHYP and participate in our activities too? Let the IFHOHYP Board know if you are interested in! E-Mail:


Message from the Board

Finding your way

written by IFHOHYP Vice President Bowen Tang


Finding Your Way

On May 25th to 27th the Canadian Hard of Hearing Association (CHHA) held a National Conference in Sidney, British Columbia, which included a one-day retreat for the hard of hearing young adults age 18 to 35. Upon returning from the retreat I became much more confident, social, and proactive in navigating my life.

Earlier this year I went through a period of struggle experiencing burnout from the many commitments I was involved in. While I have great working relationship with my colleagues at work it was difficult for me to foster social connections with them. The nature of the job requires me to be on the go, leaving little time to stay for chats. The noise in the staffroom and the quick pace of conversations added to the frustration. This led to feeling isolated from the community and never really “fitting in”. It is quite ironic as I teach my students self advocacy skills so they can navigate conversations with their peers and yet I struggle to do it with my peers – the adults. Eventually I started questioning what it is I am doing and why I am doing it, which included IFHOHYP. After staggering for months with my emotions being on a roller coaster ride, the CHHA conference was around the cor9

Finding Your Way

ner, at just the right time when I was at crossroads. I always love going to events for the deaf and hard of hearing community. There is no place that is more accessible than these events with our needs taken into consideration. All the attendees may come from different walks of life, but they have one thing in common: understanding the challenges of living with hearing loss. This makes everyone the best communication partners a hard of hearing person can ever ask for. There is no hesitation to ask for repetition because you know they will be glad to do so. In my case at this retreat, meeting other young adults from across the country, most of whom I already knew and some I met for the first time, was exactly what I needed. Simply listening to their experiences and finding commonalities in their struggles was enough to remind me All the attendees that I am not alone. We may come from then shared strategies and different walks of life, but they gave suggestions on making them more effective. In have one thing in common: her keynote presentation understanding the challengat the young adult retreat es of living with hearing loss. Dr. Jessica Dunkley, one of the few deaf medical practitioners in Canada, sent a powerful message about being an advocate. Here are the 5 points that resonated with me: 1. Be upfront about what you need to minimize potential problems, 2. Challenge yourself to do one thing different (venture out of your comfort zone), 3. Make the environment suitable for you, 4. Stop being cautious and go all out (it never hurts to try), and 5. Be proactive – tell people who you are from the get go, rather than getting by and hoping things will be okay 10

Finding Your Way

By the end of the retreat it was as if I had discovered the secret of the universe, everything just made sense to me in terms of communicating with people. I know exactly what I had to do from that moment on to make sure I am included in conversations at work, asking the right questions and taking more initiatives, etc. Ever since coming back from the conference every day was simply perfect! There were challenges for sure, but I was ready to tackle anything with the newfound skills I acquired that weekend in Sidney.

Socializing with other hard of hearing young adults is always a highlight because we just clicked right away. It was very easy to talk to one another and before you know it we had crazy fun times! I made a comment to my travel group about how they are my best friends because they are hard of hearing and I always feel comfortable around them. One of them responded, “Couldn’t it be because we just happen to be really good friends? Maybe it is our personalities that make us work so well together, doesn’t have to do with our hearing loss”. Wise words, indeed. I am grateful to have her


Finding Your Way

and other hard of hearing people in my life, knowing that I can go to them for guidance.

Me (on the left) at a CHHA event in 2000

Couple of us recreating the pose in 2017

There is so much more I can say about my experience at the conference, but what I do want to say is that it emphasizes the importance of providing opportunities for hard of hearing young people to connect socially. They need a safe space where they can meet others who are like them in the hearing context and explore their identities together, just as I did through the young adult retreat. This is what the IFHOHYP offers. Through our events such as study sessions, summer camps, etc., hard of hearing young people from different 12

Finding Your Way

countries can come together to learn various information while having a blast. These are all facilitated by dedicated volunteers from our member organizations, which many are generous to host international activities. Since joining IFHOHYP in 2014, I have made lasting friendships with many hard of hearing young people across the globe. It has been my pleasure to serve the deaf and hard of hearing community in many different capacities, one of which as IFHOHYP Vice-President. Even though I took a tumble along the road, thanks to the people I met this year (at the IFHOHYP study session in Budapest and at the CHHA conference) I am coming back stronger and more motivated than ever. Along with my fellow board members we will continue to work closely with national HOH organizations and make the IFHOHYP events an experience that you will never forget. I look forward to meeting more people at our future activities and hear how they are finding their ways in this world. Together we are “hear� to stay. Written by Bowen Tang IFHOHYP Vice-President


Message from the Board

Music as an inspiration written by Arzu Sen


Music As an Inspiration

Let me introduce myself: I am Arzu and I am from Turkey. Most of you know me from IFHOHYP and those who don’t know me, I hope we’ll meet in future meetings! It has been a week after my cochlear implant operation and now I’m writing this essay. I had hearing aids until having a cochlear implant. This story is about listening to music with a hearing aid. I want to talk about my passion for music. When I was little, I went to schools with people who hear. My environment was surrounded with their various occupations. They were losing themselves in music and I wonder what it feels like. Why are people so crazy about it? But when I started to listening music, the voices were just a noise to me. I wanted to understand lyrics but they couldn’t reach me. I was trying to focus on lyrics and finally İ failed; so instead of focusing on lyrics, I have become ‘’one’’ with the music. By listening again and again I reached them. As soon as I went to school, I made a friend who is crazy about music. When school was over, we would spend hours of time just talking about music. Her home and my home were places for us to relax. In those times we’re into the Britney Spears because of her thick voice, it wasn’t a problem for me. I remember that we were singing 1, 2, 3 and of course They solve my hearing dancing all time. I was happy with loss issues as I believe sharing the some music taste with music heals all wounds. my best friend and we realized that we become very sophisticated about music. Every day we were stepping a genre, Rihanna, Nirvana, Tupac, Eminem, Michael Jackson, etc. .All of them were our idols. Even though their music was not fully understood by me, I was becoming aware of the lyrics. Music has been inspiration for me because whenever I feel blue or upset I comfort myself with it. Like I mention even if it is precious for me I have to listen songs again and again to understand lyrics. It needs a lot of 15

Music As an Inspiration

hard-working time. Even the language I use every day I face with hardship for foreign languages it is more exhausting. Music helps to add color to my life without escaping from the real world and find peace with myself. Like every person I need someone to share my problems with him/her. Music becomes the person. I would like to say that music is my real dude. When I feel like at the bottom, he/she tries to find motivation. Music is my motivation. Sometimes Kurt Cobain gives me advice, some other times John Lennon talks to me. In deeper side of me, I know that they are alive and functions as a cure for my ‘’isolation’’ from the people. They solve my hearing loss issues as I believe music heals all wounds. John Lennon said that ‘’When I was 5 years old, my mother always told me that happiness was the key to life. When I went to school, they asked me what I wanted to be when I grew up. I wrote down ‘’happy’’. They told me I didn’t understand the assignment and I told them they didn’t understand life’’ This quote is my philosophy of understanding the world. Suddenly I’m at England or America! Music universalizes in my ‘’ear’’. It embraces me and it is consolation for me. Like the Radiohead who says ‘’immerse your soul in love’’, I immerse my soul in music. My obsession issues turn into the fixable ones. The ‘’impossible’’ disappears, music not only saves me but also finds a solution for me. It’s like my doctor: doctor of my soul. Music also functions as a trainer on how to listen to the world. People who want to operate on cochlear implant must take full advantage of music as it is a powerful tool to help the ear experience the full aspect of sound and being conscious about phonetic world.


Music As an Inspiration

Music is all of creatures, just take a sit and sip your coffee or whatever and mix your soul with it. Here are some great songs I would like to share with you: Pink Floyd - Wish You Were Here Beatles - Love Is All You Need Eminem - Not Afraid

Written by Arzu Sen


Message from the Board

Reflections From Budapest Study Session written by Hanna Mullis


Reflections From Budapest Study Session

In March I went to Budapest for a week for IFHOHYP’s study session. The purpose of the study session was to teach us, as young representatives for different hard of hearing youth organizations around the world, about how to create inclusive environments and fight discrimination within our organizations and in society as a whole. The week consisted of, among other things, seminars on the CPRD and intersectionality, interactive group activities in which we discussed topics regarding inclusion in small groups, and workshops in which lectures and group activities were combined. All in all there was a lot of interaction between the different attendees where we got to apply the knowledge we gained in the seminars and lectures. I currently live in Sweden, but I was born and partially raised in the United States and thus have two different perspectives on what it means to be hard of hearing in relation to decision-making processes in civil society and by the state. I found it interesting to learn more about others’ perspectives the study session was represented by several different countries which allowed me to gain more knowledge about local situations in places far from home. People told me how they were treated, as hard of hearing youth, by their schools, families, healthcare systems, and transportation systems. Our rights as hard of hearing young people are nowhere close to being given. We need to be vigilant in defending our right to be included as members of society. We even need to be vigilant in fighting discrimination, no matter its form or where it takes place - be it within our own organizations, how we perceive people who are different from us, or what we see in the media. By the end of the session we all decided upon using the hashtag #hear2stay to show that we, as young hard of hearing people, are not going anywhere. We play the same sports, read the same books, watch the same shows on Netflix... you get it. We are citizens like everyone else and we demand to be included. It doesn’t matter if you have a mild hearing loss or communicate primarily through sign language - we’re all here to stay. We need to be vigilant in defending our right to be included as members of society.



Message from the Board

written by Vice President Bowen Tang



At the study session in Budapest we created another series of videos, which we are privileged to have Chris Schuepp again this time to help us. It was decided that participants would be recorded talking about selected topics in a format similar to TedTalk and in our case, IFHOHYP Talks. Chris gave useful suggestions on what makes a good talk, such as using visuals as opposed to text and body movements. The ultimate tip was to use the power of stories. Participants were divided into six groups, where one person was selected to be the speaker. We have included direct links to each video in this newsletter: 1. Exclusion and Hearing Loss 2. How Do We Empower Ourselves? 3. Read My Lips 4. Three Stories, Common Challenges, One Solution 5. What Does It Mean to be Socially Inclusive? 6. What is UNCRPD?

Written by Bowen Tang


#Hear2Stay Campaign Plan

Message from the Board

written by Vice President Bowen Tang


#Hear2Stay Campaign Plan

At the 11th IFHOHYP Study Session “Building a Socially Inclusive World through Personal Empowerment” held at Budapest in March this year, participants developed and agreed on a global awareness campaign called Hear2Stay. As many of us know hearing loss is an invisible disability which often results in our needs not being met. Action must be taken to raise public awareness about hearing loss and its implications. That being said we also want to showcase that people with hearing loss can lead full lives. Thus the Hear2Stay campaign involves two parts: Starting on January 1st 2018 everyone is encouraged to take pictures of hard of hearing people participating in various aspects of life, such as going to classes, in meetings, partying, etc. Technologies that we use will be highlighted as well. These pictures will then be shared on Facebook and Instagram using the hashtag #hear2stay. This will be ongoing throughout the year. On March 3rd 2018, World Hearing Day, we will put a “hearing booth” in public spaces and invite people to experience what it is like to have a hearing loss by putting on a pair of ear muff, then they try to repeat words or sentences. The level of difficulty will increase as we cover our mouths, whisper, mumble, etc. Posters and videos are published with the hashtag #guesstheword. A campaign of this scale will require the support of all our member organizations. Depending on the resources available in the countries there will be challenges in implementing the plan such as funds and volunteers. To be successful we need to coordinate internationally such as updating each other on the progress, using common posters and links to the campaign website, etc. Modifications will be made to suit the needs of each country (e.g., the hashtag #hear2stay can be translated into local language to ease understanding). 23

#Hear2Stay Campaign Plan

As of July 1st 2017 there are two countries, Canada and Netherlands, who are in the process of putting together the campaign. Sh-Jong, the Dutch organization, has generously offered to share the Hear2Stay logo Action must be taken and branding guide for all of us to raise public awareto use. The IFHOHYP Board will support our member organizations ness about hearing loss to the best of their abilities. Your and its implications. input will be valuable to the Board in figuring out how we can best support you. Thereby we would like to invite a representative from your organization to be part of a working group to discuss the implementation of the campaign. Please contact us at The campaign comes at a milestone for IFHOHYP as we enter into our 50th anniversary in 2018. Let’s take advantage of this opportunity to show the world who we are: proud and loud to be hard of hearing people and we are HEAR 2 STAY. Written by Bowen Tang


Share Your Story

Maybe your story belongs here too? Do you want also to share your story in the next newsletter of IFHOHYP? Shall your story be heard? Let us know what you want to tell the world! Just e-mail us your interest in writing an article and we will contact you shortly. E-Mail:


Message from the Board

Invitation to “Share Your Experiences” and IFHOHYP AGM 2017 Helsinki, Finland October 26th to 29th 2017


Invitation to «Share Your Experiences» And IFHOHYP AGM 2017

Kuuloliitto r.y. and Svenska Hörselförbundet r.f. welcome all members of International Federation of Hard of Hearing Young People (IFHOHYP) and all other hard of hearing young people to their youth conference and the IFHOHYP Annual General Meeting (AGM) in Helsinki, Finland from October 26th to 29th, 2017. Invitation: AGM-2017-Invitation-Final.pdf Registration:


Message from the Board