A A A Accessibility A A A A
Born profoundly deaf. 78 db and 83 db.  . ( 1948) Speech therapy started 1951. Had to be mainstreamed in kindergarten cause I was imitating the kids in a local deaf school. Absolutely no ASL anywhere.  Hearing aid ( body aid)  in 1st grade. Two BTE in 3rd grade.  Short story on my schooling.  We just did not talk about handicaps. My 3rd  grade teacher remembered my hearing loss. ( an OLD  friend of Mom's) . It took me years and years AND YEARS AND YEARS   to realize that people forgot my hearing loss.  ( that was a compliment but I needed  the help!!!)  Telling a teacher at the beginning of the year.  They totally forgot it. I never knew they were talking while they facing the blackboard and writing.  If students answered in the classroom. I was searching for them to hear/see what they said.  Hated it when the teacher said " I do not go by the book."   AWWW Geee,  listening. Some walked all around the room. I got a long neck from watching them. Tutors , we found some. But they were not with the school system. They would say  " I think this is important." Maybe my teacher did too. Very  very very discouraging. At church school 1st --5th grade. We had Spanish. Always had to start over for the new kids. 5th grade,  we learned The Lord's Prayer. Repeated 5th attending public school.   Later 9th and 10th, I took the required language. Spanish. Again, my tutor  in 10th grade had her method. ... All  of the above  in school for me  was " sink or swim."  Yeah I did go through a few depressions. ( I did not understand what was going on, or why I had these deep and sad emotions) . 
 
A HOH friend , 10 years younger than me. Speech is good. Tiny lisp.  Went to the Academy with all the nuns. They did  NOT want a failure on their record.  You bet they tutored her in Spanish the summer before school.  She knew exactly what to expect. Of course, she got on the Spanish Honor Society.  I found this out a few years ago.
 
Another friend , one year older than me.  You don't forget her hearing loss with her deaf voice.  She got A's in Spanish. 
 
I  still get irritated thinking about this.  I attended school like a hearing person.  Barely passed.  
 
I was a  plain little wall flower growing up. My Dad saw an outside activity. I started riding horses.  We later bought ( total of 3 horses  ,  one at a time) . I was showing American Saddlebred all over Florida!!!!!    Expensive, yes.  Dad split the monthly bill 3 ways. Dad, Mom and me, we 3 loved it. Showed 7th--12th grade.   I did not do too bad. Got some blue ribbons.  Dad 's goal was for me  to look back and think " yes I was good  at something!!!!!"  I really treasure my memories. Any competitive sport would do the same. Boost some confidence in us. 
 
All of this was just with the hearing loss.  Started noticing  blind spots in my mid 30's.  So my journey is not the same as your Molly. 
 
American's with Disability Act  has helped and there is so much more awareness . We have come a long and positive way. !!!!!!!
Tuesday, 02 December 2014 00:00

Down the Loo or in the Nettles!

Down the loo or in the nettles at the end of the garden: from the age of 3 my top two destinations to hurlmy detested hearing aids. 

Painfully shy, diagnosed profoundly deaf and devoid of much speech, I took every opportunity in venting my fury at having to wear such instruments. I mean, have you SEEN those things we had to wear back in the 70s? Worn on a harness with huge wires travelling from chest to ears that shouted ‘Look at me, look at me!’.  Not to mention the shocking level and quality of noise that was funneled into my ears.

Of course I have many, many happy memories of early childhood, but those that are sharpest in my mind are those of isolation, confusion and excrutiating shyness.

Nursery: I had absolutely no clue of what was going on most of the time.

Early school: desperately wanting to blend in but oh, the agonising, public shame of having to walk out of the class in front of everybody’s stares for my speech therapy, and then everybody’s questions afterwards. One classmate asking me ‘why was I death’?

My desperation to be a normal part of society was all-consuming and gave me a determination (some would say pigheaded stubbornness) to prove to everybody I was just as good as anybody, and better. With the steady improvement in hearing aids and relentless (and I mean, relentless!) determination of my mum to fight against the system and open up my world, I slowly but steadily started catching up with my contemporaries.  

By the time I was in to my second year at a private girls’ school (small class sizes and fewer teachers to remember my needs was, fortunately for me, a huge help), I was academically successful, ending up with 10 O’ Levels and 3 A’ Levels, was in many of the sports teams, played badminton for Surrey and had a decent circle of friends. With long hair to cover my ears and a good speaking voice, nobody would ever know I was deaf.

Now I turn to another memory: this time me at the age of 15, in my bed not being able to sleep. Praying: please God, please God don’t let me go blind.  Which is weird because I was not, at this point, suffering any loss is sight as far as I knew, it was that my bedroom seemed darker than usual and I couldn’t pick out things in the room I was sure I could before.

Although I didn’t know it at the time, the slow decay inside my eyes had started. My badminton started suffering. I struggled to see at parties. I couldn’t see the same as my friends in the cinema, I became ‘clumsy’.

But it wasn’t until I was 22 that I had any inkling of what was happening. I was having Sunday lunch with my boyfriend’s family one weekend when I complained about my poor night vision. My boyfriend and his father, who were both doctors, fetched an opthalmoscope, spent ages taking turns peering into my eyes and looking up stuff in their medical books, In the end the words Retinitis Pigmentosa came out, and there it was, my bombshell. Delivered to me post roast pork and apple crumble in a sunny living room in leafy Northamptonshire.

The formal diagnosis when it came whilst sitting opposite Professor Bird at Moorfield’s Eye Hospital, was of course utterly devastating for me and my family. The unbearable unfairness of it, the overwhelming fear of my new future was terrible.  Consumed with numbing grief, resentment was at the surface of everything. Why me? I had already beaten a profound hearing loss so why this as well when I need sight so much more than other people?

My parents supported me and loved me, but I knew they felt an enormous sense of guilt about passing on such genes. I didn’t have enough in me to deal with their feelings of guilt and sadness. My parents always fixed stuff, it was frightening to see them and everyone else become powerless.

I was offered no effective, appropriate support for someone of my age and stage of RP. The literature, containing pictures and stories of guide dogs and canes and people twice my age, made me feel ten times worse as I was nowhere near that stage and I threw everything away I soon as it came in the post. 

Completely lost, this was the beginning of my new mountain to climb.

‘Down the loo or in the nettles’ is to be continued.

 

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