How come you get it? by Carole Humphrys

A deaf person recently asked me “How come you get it, being deaf, you’re hearing? Other hearing people just don’t get it…” I’m not sure this person is aware of the effect that had on me. It made me reflect, think, and look at other people around me. I have now been asking myself ‘How come I get it and they don’t?’ I think I finally have the answer.

As one.

As one.

I grew up in a diverse close and wider community. My parents best friends had three children, two of them were disabled: one had Duchennes Muscular Dystrophy and the other Downs Syndrome. I was raised as a Methodist. The Methodist Church was very inclusive. I didn’t really take away ‘religion’ in its strictest sense but it taught me basic moral principles, for example, don’t do to others what you wouldn’t want done to you. Treat others with respect & you should get respect back. We are all equal. That was my interpretation anyway! I think this is where my naturally ’empowering’ nature comes from. I remember my Dad telling me when I was very young:

“You should always be willing to help people to help themselves, but never do it FOR them unless its absolutely necessary, it will take away their independence and their power”

I always saw the person. I’m still not sure if this was taught, learnt, in my nature or a mixture of all. Every time I was faced with someone or something different, I went to my parents and asked them about it and they explained things to me in a way I could understand.

Me, age 5:

Two black girls started school. I had never seen a black person. It was 1970. I came home and told my Dad there were two girls who started school and their skin was really black. I expressed some concerns, I thought others were calling them names, although I remember not really understanding why. I can still remember my fathers reply:

“Their skin is that colour because where they come from the sun is really really hot. Their skin needs more protection than yours as the sun here doesn’t really get that hot for very long. The skin of the people who live in their hot country has changed over time to help them to be able to live there”

Now that was something I could understand, even at five years old!

Fast forward. I am 6 years old.

Dad was a Chartered Accountant. One weekend I went with him to a farm in the depths of the Kent countryside. He put me down in a kind of courtyard surrounded by the farmhouse and a few barns. In between were trees and grass. He said:

“Stay in this courtyard, and whatever you do DO NOT climb that tree”.

Talk about power of suggestion! I hadn’t even thought about climbing any tree until he mentioned it.

Now it looked so inviting. Obviously I climbed the tree. Climbing up was easy. It didn’t look that high from the ground. I remember concentrating really hard on getting up the tree. So hard I hadn’t looked down, until I wanted to climb down. ‘Down’ suddenly looked really scary.

I clung to a large branch. My Dad would be angry if he found out I got stuck in the tree I had been told not to climb. I was about to shout for help when I saw a teenage girl entering the courtyard. I turned my head towards her and shouted “Help! Please! I cant get down, I’m stuck”

At this point I was crying. She ignored me. As she got nearer I tried again. She ignored me. This made me angry.

I had been taught manners, and this was just really rude! I was six, stuck up a tree, and this teenage girl was ignoring my cries for help. I had the equivalent of a temper tantrum and started kicking the tree, shaking the branch slightly. She looked up. Her face showed surprise, shock and concern all at once.

She climbed the tree, put me over her shoulder and climbed down with me. She then carried me to the Farmhouse. I was facing backwards as she carried me. I thanked her for helping me and begged her not to tell my Dad. My mouth was next to her ear. I got no response. I tried again. No response. She kept doing this weird head shaking thing and frowning at me. Again my ‘manners’ training kicked in, and I thought ‘How rude? Why is she not replying?‘.

She put me down in the kitchen & I ran to my Dad. I told him (while crying and looking very sorry for myself) “That lady’s really rude!!! I spoke to her and she COMPLETELY ignored me! I only wanted to say thank you”. My Dad sat me down and explained to me she wasn’t ignoring me, she couldn’t hear me, her ears didn’t work, and because she had never heard sound, she couldn’t speak to tell me that she couldn’t hear me. I remember trying to process this. She cant speak??

Dad explained that she can’t ‘speak’ but she can communicate. She communicates with her hands and face, making ‘signs’. I was fascinated. That afternoon in two hours I learnt to fingerspell the alphabet & my name, I learnt numbers and signs for help, food, drink, pain. Over the next two years I saw her once a month and my sign vocabulary grew (very) slowly. I loved it!

Fast forward. I am 9 years old.

I woke one morning with horrible pain in my ears and was unable to hear much. I had a major internal ear infection. My eardrums burst. I was temporarily deaf and hoh (profound to moderate, it varied) for six months between the age of nine and ten.

Fast Forward. I am 13 years old

I spent the last 3 years making regular trips to the ENT unit. My hearing loss had been variable due to constant ear infections, but had stayed from mild to moderate for around a year. There were concerns my hearing would be ‘permanently affected’. My Nan had always had a hearing problem, although interestingly we never spoke about it! Nan wore hearing aids and could function well with them but when they were out she struggled.. My mum was hoh, completely deaf on one side following a push-bike ride into a wall aged 12. We had all just adapted without realising it I think. We never really shouted to each other from room to room. We just entered the room and spoke directly to people. We only ever spoke one person at a time. I always thought this was part of the ‘manners’ training but I am sure now it was a result of adapting to need. Adapting to my needs when temporarily deaf was natural at home. Outside of home during this period was another issue altogether. School was a nightmare.

I met a deaf boy at school. Looking back I think I found myself seeking him out because communication with everyone else (including the teachers) was proving difficult. I tried to sign to him. I was proud of my (very basic) ‘signs’. I was excited! He was only the second deaf person I had ever met & I would have the chance to practice and learn more. I signed at him (‘how are you?’ I think). He went nuts at me. He told me we had to ‘do that in secret’ and it ‘wasn’t allowed’. I was stunned. I never understood why my school wouldn’t allow ‘signs’.

Fast forward, I’m 15 years old.

I’m at an under 18’s disco. This gorgeous looking lad comes over and takes my friend by the arm, smiling, and leads her onto the dance floor for a slow dance. When she comes back she’s frowning. “That was really weird” she says to me. “He didn’t say a word at all? He just ignored me, even when I spoke to him”.

This sounded really familiar! “Stay there” I replied. ‘I wonder if he’s deaf?’ I thought. I went all the way to the back of the club before I found him with a group of deaf friends in a fairly well lit area. Six lads. All deaf. With my ‘Pidgeon’ sign, beer matts and a pen, I finally managed to introduce myself & my friends and explain to my friend that had danced with him why he ignored her!

These were my first introductions to the problems that deaf people faced. Things have improved in some areas, some things, sadly, remain the same.

*********

Mum was a Girl Guide Captain.

She did a Girl Guide camp exchange with the ‘Spastics’ school run by the Spastics society (now re branded Scope). A couple of our Guides spent the camp with them and vice versa. Sandra came to camp with us. She could walk quite well and talk well once you tuned into her voice. She had a wicked sense of humour. There were two other girls on the exchange camp but I didn’t like them as much. I was very upset when my Mum told the whole Guide group that whatever we did we cannot make Sandra laugh whilst walking or standing because she will fall over. Its dangerous. Her mother does not allow her to laugh when she’s walking or standing up.

Well, that’s not on is it?

Imagine having to control when you laughed, that’s ridiculous!

We consulted Sandra and asked if she was happy with this. Turns out she wasn’t. She said she hated it.

Said her mother was paranoid. We all liked telling jokes! We devised a system. We arranged people behind her to ‘prop her back up’ when she lost balance. If we were walking along there would always be at least two people behind her so if she just wanted to randomly giggle, then she would be safe. If my Mum had seen her actually fall when a few of us weren’t paying attention she would have gone mad! I got a bit worried, until Sandra asked me “Don’t you ever fall over?”   “yes, quite a lot, I’m clumsy” I replied.

“So falling over is normal then. I like normal.”

That comment will stay with me for the rest of my life.

All of these things are what has made me who I am. They, I think, are a small snapshot of why I seem to ‘get it’, no matter what ‘it’ is. Not just deafness, but all things. If I don’t ‘get it’ I make every attempt to educate and challenge myself until I do!

I can’t stand inequality of any description. I can’t ever remember being any different. I had to change and adapt to other people all of my life. I grew up with someone with a life limiting illness so was introduced to death at a young age. Muscular Dystrophy is a slow disease so adapting was what I did as my friend Alan’s abilities constantly changed.

One ‘adaptation’ involved helping Alan to ‘upgrade’ his wheelchair with a lawnmower engine so he could race a friend who had put a lawnmower engine on his push-bike!! Alan won the race down the sea front promenade but we forgot about the brakes. His chair stopped and he was catapulted into the sand! Thankfully he was fine and our parents never found out! (phew!)

Sometimes other people have had to change and adapt for me, and not only when I had a temporary hearing loss. The way I learn can irritate people. I have learnt this from experience. I tend to challenge and I ask lots of questions if I don’t understand. Often I don’t understand the explanations given first time, so I adapt the question and ask it in a different way in the hope I will get a better explanation. Very occasionally I get an excellent tutor, who realises the explanation needs to be given in a different way. Then I get it much quicker. If they are really good they recognise my learning style and adapt permanently. We all think and see things differently. Nobody is the same. We are not clones of each other. We are individuals.

Quite recently, I was leaving an event with a wheelchair using friend of mine. Her partner went to stop a passing Taxi. We were in London. My friend hung back slightly. She called me over and asked me to stand in front of her. “Why?” I asked.

“Because if they see the wheelchair they won’t stop”.

I seriously couldn’t believe this. Its the 21st Century and still people have this weird attitude?

The deaf community are so much more accepting of different races, religions, abilities and beliefs compared to the hearing community. Its one of the things I love about the ‘deaf world’. I realise this is general sweeping statement, but in my experiences this is what I see. The hearing community really is very strange, I can say that. I’m one of them!

Just one more thing. Although you are not here any more, thanks Mum and Dad, you made me what I am today: a whole individual who can’t stand inequality of any description and who wants to empower all people to be independent, equal and think for themselves, regardless of background, race, religion or ability.

I can only conclude, in answer to that deaf person who asked ‘how come I get it?’ that this is why!

This post by me, I would like to dedicate to Eleanor.

By Carole Humphrys.

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