I have Usher Syndrome Type 2, a heredity disorder that results in deterioration of my sight and hearing. I am 72, still kicking, and I am very active online, campaigning for accessibility for people with sensory difficulties. AMA.

What would be the ultimate coup for your campaigning?

Dear terracottalily

Thank you for your interest. My ultimate coup (using your exciting word) is for every public venue eg. town hall, theatre, lecture hall, place of worship, etc. to have a fully-functioning induction loop or infrared system and for the staff to know what they are and to service them well.

A subsidiary objective would be for me to be crowned Induction Loop King and to feature on a high-value UK postage stamp alongside Edward Snowden, and labelled 'Champions of the 21st century.'

Perhaps you might tell me if you have similar objectives?

My hearing is beginning to fail me so I am very interested in induction loops. Well done on your campaigning. How can someone like me help?

Thanks for your encouraging response. It would be good if you could join in the campaign. I suggest you join/make contact with Hearing Link, who campaign for people with hearing loss. One of their campaigns is for people to promote induction loops. You may wish to email Sally Shaw at [email protected] Good luck and I'd be delighted to hear of the response. Of course I don't know in which country you are. Colin, Hove.

What is the biggest challenge you face on a daily basis, and how do you overcome it?

Thanks for doing this AMA!

The biggest problem, and one which I can't really overcome, is not being able to engage in conversations with more than one person. Pubs, restaurants and parties are no-go areas for me. I can converse very well one-to-one in a quiet environment, such as on a rowing boat in the middle of the ocean!

As hearing aids become more sophisticated we might be able to zoom in on particular speakers. It's a blessing to me that I can hear, i.e interpret, speech on the radio provided that there's none of the cursed background noise or interjections from other speakers. It would be interesting to hear of your own experiences, and to find out in which country you live.

Colin, Hove

I don't mean to hijack this thread but because OP is not answering questions about this terrible disease and this is such a big deal to me, here is a link to my AMA about my experiences with Usher Syndrome Type II. Please consider supporting the Foundation Fighting Blindness in developing treatments for retinal degenerations. It is a frustrating disease to have and it is disheartening to see all the general ignorance and cheap humor at its expense.

Dear ushersyndrome!

The reason I have gone AWOL is because I have so many commitments and, shamefully, it is difficult to access emails without my reader, who is not always here.

I have been a member of the RP Fighting Blindness. Is that what you mean by Foundation Fighting Blindness? I'm afraid I don't know about Foundation Fighting Blindness. I will private message you and you are welcome to email me if you like!

As someone who has never had any form of sensory loss even for a little bit Im curious at the kind of difficulties you may have in your day to day life that someone like me couldnt even fathom.

I have a lot of urgent things to do, so would you mind if I come back to you in a week?

Colin, Hove

I'm just reading about audio induction loops for the first time thanks to you. This idea seems brilliant!

I'm wondering about the practicality of it all. How much would it cost to outfit a concert hall or a theatre with the equipment needed to do this? Will people require special hearing aids in order to use the system?

Thank you for this encouraging response. I have some urgent commitments so I propose to come back to you in a week. However, essentially all one needs is a standard hearing aid with a 'T' setting in order to be able to tune in to an induction loop. Of course, the venue must have an induction loop fitted and of course that is the problem. May I leave you today with a suggestion that you go to the website of the charity Hearing Link at www.hearinglink.org and take it from there? Thank you.

Colin, Hove

Are you Finnish? I've heard it's common among people with finnish ancestors.

No, I'm not Finnish but I know that country quite well. I've visited it many times in the last few years for conferences and work. There are relatively many people in SF with Usher Type 2 and 3. I appeared in Tuntosarvi magazine, which is a Finnish publication for deafblind people.