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Stuart McNaughton: HeIsNotMe
Stuart McNaughton, born 1978, wrote a book about his experiences of a deaf childhood and a hearing adulthood, published in 2014.
In the last excerpt of the CIV-NRW News (I/ 2015), Ronald Stein wrote a review of the book:
“Das Bin Ich Nicht “
Now Stuart McNaughton was on Book Tour in Austria, Switzerland and Germany. I took the chance to visit one event in Cologne on the 2nd July and to ask him some questions:
1. You wrote about your family support and about other connections, e.g. healthcare professionals.
Who supported your family, especially your mother and how important is their support nowadays?
Back when I was a child, I don’t think there was enough support for parents of deaf and hard of hearing children – it was very much a case of ‘the system’ versus the parents, but my mother persevered and it is because of her that I am able to meet you today, and to share my story with the people who have arrived.
How do you feel now about your reprimanding aunt and your mocking uncle?
It took me a long time to understand how family members can treat ‘their own’ in this way. However I have very little contact with family outside my immediate family. The reasons for this are not just because of the reprimanding and the mocking, but because of the value that I place on my immediate family – sometimes we just have to focus our energy on the people that matter, and the people that respect us.
2. I think there are still hurdles in everyday life, even after your huge success achieving independency.
Would you like to name them and the resulting wishes?
Even though I am now implanted and can hear VERY well, you’re right: huge hurdles do remain. Life is full of uncertainties, and not just for those with hearing loss. Nearly every day, people stare at my devices. I have even noticed some people taking photos of me from behind, when they think I’m not looking or haven’t noticed. But perhaps that’s why I’m here. Perhaps it’s my mission to raise awareness of cochlear implants because, on a bald man like me, they are very visibile, aren’t they?!! It’s a challenge I welcome with open arms for every day I wake up and think that I might actually be able to make a difference to someone’s life today.
3. Are there still situations where you do not feel safe, where you need company for assistance?
Not really, although I have to say I do yearn for a good night’s sleep sometimes. I’m a very light sleep and if I’m sleeping alone, I just don’t sleep as well as I would when I’m sleeping with a partner or sharing a room with a friend, such as on holiday. When I’m awake, and I’m using my processors, I feel safe ALL the time because I know, on occasion, I hear better than some of my hearing peers.
4. In general, how would you describe the situation for hearing disabled people in England, e.g. in a cinema, theatre, museum or at a convention?
This is a good question. During the 80s, the movements that we saw in the US were replicated to some degree in the UK. This brought about the Disability Discrimination Act and, later on, the Equality Act. All the time, cases are being brought against establishments to ensure that access is as equal as possible. Sometimes, I notice a ramp going into the back entrance of a cinema. Sometimes, I go to the theater and there’s a sign language interpreter standing on the side. Achieving 100% access for all is a costly exercise which needs to be balanced with the income of any establishment, but I think we are seeing more and more efforts to make this accessible year after year. And it’s fantastic.
5. How difficult is it to get the approval for one or even two Cochlear Implants from the NHC?
If a patient is referred by the GP to Audiology and Audiology confirm that a hearing aid is no longer beneficial to a deaf/hard of hearing person, the process can be relatively straight forward. The patient needs to be proactive though. The NHS doesn’t look for patients, and operates on a ‘care on the point of need’ basis. So, if you can demonstrate that you have a need, care will be provided.
How long approx. do you have to wait after approval for the surgery?
Back in 2000, I waited nearly two years for my implant. However, some centres now operate within three months of completing the initial assessments.
Do you know how many hospitals can provide this kind of surgery?
In the UK, 22 hospitals provide this surgery.
6. In Germany there are many Support Groups for the deaf, hard hearing and CI people. There are lots of people volunteering, e.g. publishing our journal CIV-NRW News.
Could you describe the situation in England?
Self-operated support groups are a new trend in the UK, because there are now enough recipients across more areas to maybe make them functional/sustainable. There are, however, many charities that people can turn to for advice about cochlear implants, which also provides opportunities for people to socialize and exchange views of life with cochlear implants.
7. Your first implant is now 14 years old and it still works even with new speech processors. As you described and we all know the technology is evolving constantly, so maybe one day it will be necessary to have a re-implant, because the upgrade is no longer compatible.
How do you feel about that?
With my implant, this isn’t actually true. The C-II implant, which came out in 2001, is the first implant that is upgradeable without the need for further surgery. Instead, the implant is software driven and updateable so it’s a bit like updating your iphone with new software every few months. Since 2001, I have benefitted from every new feature AB has developed. Starting with HiRes 120, which is a speech processing strategy that allows you to hear five times more resolution of sound. On top of this, there’s HiRes Optima which makes batteries last longer. Then, there’s ClearVoice, which emphasizes speech, especially in noisy environments. All of these ugprades – and many more which are planned and coming in the future – are/will be compatible with my implant.
8. Do you have any ideas, visions or propositions for the future?
I just want more people to have cochlear implants. Imagine a world where we pre-empted all conditions. For example, imagine that at the age of 50, you could ELECT to have cochlear implants BEFORE hearing loss sets in. After all, my hearing is totally bionic so, unlike my hearing friends, my hearing is likely to only improve as I get older, because of all the new features.
9. Would you like to share s.th. with our (CIV-NRW News) readers?
There’s two things I would like to point out. Please tell your friends, family about my book. A lot of effort has been taken to make sure that my story could reach the German population, and the feedback I have received has been positive. Hopefully, it will inspire more cochlear implanted people to share their stories.
Please like the He Is Not Me Facebook page on www.facebook.com/hesnotmebook. Several times a week, I’m sharing my hearing experiences with others and it would be nice for more Germans to be part of that audience.
Text: Sigrid Foelling für CIV NRW News
Bild: Advanced Bionics