Living With Ataxia - Online Support Group

As my speech has become much worse I'm beginning to understand how frustrating it was for my friend, who was born deaf and always had unintelligible speech.

When we was at college I was always her interpreter, often for other students too (as my speech was good in those days) and people always spoke me to rather than her cos I guess i sounded more 'normal' with not been born deaf. Even staff, if their signing wasnt up to speed or they were new, would ask me what another student had said.

Now I struggle to speak myself I can see other people being the same with me, they speak to my interpreter rather than me. Lecturers at uni often had this problem and my interpreter was often praised by an enthusiastic older lady lecturer who would say to her "well done Thelma" which always made the whole class laugh! Every time Thelma would explain that it was my answer and she was just translating it!

Now I finished college and work etc and in a small village where no-one else signs and getting an interpreter for any appointment is quite difficult I do find communication a lot more frustrating, especially with it been such a struggle to get a coherent sentence out verbally.

You get so you dont like answering the door cos it means having to speak or you avoid eye contact with people in street in case the want to get in a conversation with you only to find they cant understand you, at which point they suddenly remember a reason they have to rush off! I used to be so outgoing as well I'd speak to anyone in any
language! (signed or spoken).

I'm waiting to hear from the NHS guy now as he has my Lightwriter sitting in his office, so I still have to get an interpreter for my assessment on Thursday.

We are waiting for rep from the company to contact him and arrange to bring it to me and give me half a day training and set up environmental controls etc. Hope its soon as have to go back to doctors as well to get my medical exemption certificate renewed, it would be nice if I could go down and ask myself using the
lightwriter.

My neighbour has also told me she is looking forward to a chat over a cuppa as at moment we can only communicate properly via our computers, each in our own houses.

Personally I found, me losing my speech harder than having to use a wheelchair or even having to learn to lip-read and sign when I was younger. (I was 16 when I went deaf). It makes me relaise how much we take for granted that when we open our mouths the right sounds will come out as intelligible words for others to understand.

Sometimes its sad to think that only 7 years ago I could speak and walk about like most of the rest of the world, but I'm at least glad that our technological advances are so great that things like communication aids and assistive technology are available to help me find a way to communicate with the rest of the world.

Kati

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Comment by michael losacker on March 6, 2009 at 7:31am
I AGREE. IT IS FRUSTRATING. FRIENDS & FAMILY ARE GOOD.
Comment by Sara McArthur on March 1, 2009 at 10:16am
Hi Sheila,

When I was in college there was a girl that was in one of those heavy duty wheelchairs and when she spoke it was garbled. Even the instructor would give a polite laugh and ignore her. I don't know what was wrong with her, but her eyes were bright and she obviously had a sense of humor (she would crack jokes but no one knew what she said).

When I get tired words come out thick and slow. I also have a tendency to substitute words that do not make sense.

I know what you mean about talking so people can understand you. I absolutely hate to talk on the phone, I feel like I'm talking weird, what do the people think on the other side of the conversation?

I hope this new technology can help you, I think you'd find a new world opened for you!

Sara
Comment by Kati on February 24, 2009 at 6:57am
I did ask once but they dont have anyone who can sign fluently enough to understand me and make communication with an helper so much easier. I had same problems when trying to find a paid helper the woman from agency said she doubted I would find anyone who would be able to hold conversations in sign all day.

I got one who had promised to learn in interview but then never did, but also had other more serious problems with her and was relieved to get rid of her when I moved into adapted housing. Until I have another way to communicate with people that everyone can understand straight away (i. e the 'Lightwriter' when it eventually arrives) , my biggest issue with all human helpers is communicating!

Moderator
Comment by Alan Thomas on February 24, 2009 at 6:46am
do you have any sort of VOLUNTEER services, in your area???

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