Guest Writer: Robert Mandara, new 1st Vice-President of EURO-CIU.
The Annual EURO-CIU Symposium was held in Wroclaw, Poland this year and Robert Mandara from Finland was selected to the board of the association. LapCI ry is a member or the EURO-CIU and works together with the European Cochlear Implant associations.
I was born in Ilford, near London, in 1968 with severe genetic hearing loss. I moved to Essex as a toddler and then got my first beige chest-worn hearing aid before progressing to BTE hearing aids. In spite of the difficulties of mainstream school, I left with good qualifications. Following an electronic engineering apprenticeship with GEC Marconi, I attended Surrey University. Hearing-wise that was a huge mistake; I had to study in huge lecture theatres with 100+ students and professors who mumbled. Most of the students sat at the back of the lecture theatres, while I sat in the front row and still couldn’t hear! Nevertheless, I met my Finnish wife, enjoyed a year of work experience in France, and earned a degree.
We relocated to Finland in 1996. I hoped to find that a new line of work in a new place might prove easier on my ears. In Finland I have worked as a technical writer for many companies including Nokia, KONE and ABB. My work requires me to communicate with many kinds of people, and email has been my lifeline.
How did I become a CI user?
On visiting the ENT department of my local hospital for the first time in 1996, the doctor announced that I should have an implant. I was shocked. I had gone there asking for adjustment of my hearing aids. Implants were still in their infancy so I was unwilling to contemplate them. Subsequently my hearing worsened until I was in a very isolated and angry place. I began to learn sign language and got a hearing dog. In the end, I had two choices: implants or sign. The very last time I declined the doctor’s offer of implants she said “A lot of people are very happy with them!”
With that seed in my mind, I set about meeting the happy people for myself. In fact, I hardly needed to ask them questions. Just walking into a room full of CI users and seeing their relaxed body language told me most of what I needed to know. All the while, I was tense, exhausted and isolated. Everyone contemplating cochlear implants should meet CI users face-to-face so that they can see the wide range of outcomes. After making my mind up, the whole process took around 6 months including evaluation and operation. My first operation was in 2014. I was well-prepared for the operation and had realistic expectations. My other ear was implanted in 2016. I strongly advocate bilateral implants for all adults who want them.
It has been a long, rewarding journey to learn to hear with implants. They have given me my life back and I feel like a lottery winner; I would not swap even one of my implants for €1 billion! Five years ago, I was angry, exhausted and depressed. Now I am alive and engaged with the world. The implants make the lives of everyone around me easier too. Perhaps I should have embraced implants sooner. However, without experiencing the lows of deafness first, maybe I wouldn’t appreciate them so much.
Active member in CI associations
Following implantation, I became active in the Finnish cochlear implant users’ association (CITO) and its peer support network.
EURO-CIU is the umbrella association of associations across Europe, representing about 170000 cochlear implant users. I attended the annual EURO-CIU Symposiums and Workshops in Helsinki (2017) and Barcelona (2018). At this year’s Symposium in Wroclaw, Poland, I was honoured to be elected 1st Vice-President and the only CI user on the board.
EURO-CIU sponsors the annual European Friendship Week. I attended EFW last year as a volunteer. I was blown away by the amazing youngsters at the camp! Cochlear implants have transformed their lives more than they will ever know or fully appreciate. To see that transformation in my lifetime is simply incredible.
So, what do I want to achieve while on the board of EURO-CIU? In short, as much as I can! But perhaps these are my highest priorities:
- Ensuring that users (children and adults) are in sharp focus at the front and centre of everything we do. At the moment, I feel that there is too much focus on the periphery: doctors, surgeons, audiologists, speech therapists, parents, manufacturers, neonatal screening programmes etc. As well as getting better access to implants (especially bilaterally), users need lifelong support to ensure that their processors are maintained and upgraded. Access to assistive devices, disability benefits and other support is still very challenging.
- Harmonising rules. The rules for cochlear implants vary hugely across Europe without much rhyme or reason. While Finland is great for bilateral implantation, the renewal situation is far better in the UK. Wouldn’t it be better if all of our countries offered a consistent very high standard of implant provision and aftercare in all areas?
Please feel free to contact me at robert.mandara(at)elisanet.fi