July is Disability pride month. It is a month where we educate people about our disabilities. We need to show people that we are all still people with feelings. We just can’t do things the same way others can.
People with disabilities just want to be accepted. I find most people are very accepting and good but there are still some that will not understand me or how to interact with me and my friends.
I think there are a few simple steps everyone should keep in mind when meeting a disabled person. First always assume they can understand. Someone might be nonverbal and communicate but they might be able to carry on a long detailed conversation. Also remember to take the time to get to know the person.
Another step people need to take is open to learning. For me my syndrome is fairly rare so the more I tell people the more aware they will be. When you learn you can then help to inform others
The last tip is to remember that we all have feelings and thoughts too. Always listen and be open to whatever you see. I for one love being with friends and family but some people prefer being alone.
No matter what the disability most of the people I know are lovely, kind, genuine people who love to get out and have fun.
I find one of the hardest things for many people especially those with disabilities is accepting themselves. I find this is true because I have struggled with it.
For me to accept myself and love myself it took time and I still have my days. Firstly I surround myself with people who understand and help me to be a better person.
I also try to remember that we are all unique and what makes us amazing is the qualities we have. I try not to let other peoples opinions get to me.
One big think I did was just learned to be a better more mature person and this helps as I don’t get frustrated with myself as much.
Over the last 2 years, no one has been able to travel because of COVID restrictions. Many people stuck to seeing the state and country they live in. As an Australian person, I have a few places I love and a few I would love to see.
I would love to see more of the state I live in. NSW is a lovely place and I would love to explore more of the regional areas especially the south and central West. I have family up on the north coast so always love to visit there.
I would love to see Victoria more. I have been to Melbourne many timesbut would love to see thegreat ocean road and all the other regions.
I would also love to see more of South Australia, especially the part that joins the WA coast. I have some special friends in WA and it would be amazing to visit them.
I love the Gold coast in Queensland and I want to meet my little cousins in Brisbane. I also want to go to the Daintree rainforest. I want to see the Northern Territory and the place where mum was born.
I love Tasmania and I am always happy to go there.
If I could go anywhere in the world I would go to Europe, Asia Pacifiic, USA, and the UK and I would love to see all the different countries and experience the different cultures. I particularly want to see France, Italy and Greece.
France has some beautiful gardens and spots I would love to see. I have always wanted to see Monets gardens. We have a few Greek friends and I would love to see where they are from. Italy is another place I would love to see because I have seen beautiful photos.
In the Asia Pacific, I would love to see Vietnam, Cambodia, Nepal, Japan and the Pacific islands. I would like to see Vietnam, and Cambodia because they have amazing places and scenery. They also do amazing textiles and homewares. I would love to see Japan for similar reasons but also the cherry blossoms. My favourite carers are from Nepal so I want to see their beautiful place. I love the beach and swim so I would love to see the beautiful Pacific islands. I also love the generousity of the people in Fiji and Hawaii so I feel like I would be content on the other islands.
In the USA I want to visit most of the states especially the ones where I have friends. I particularly want to go wherever my CHARGE conferences are so next year I am planning to see Florida.
In the Uk, I want to see Ireland, England and, Scotland I have English and Irish ancestry so want to see them plus meet some of my CHARGE families there and in Scotland.
There are many different types of hearing aids. Some are implanted and some are on the ear.
Yesterday, I got an update on my superpower Baha hearing aids. Every few years as technology improves they need to update.
I am unable to have implants because of where my veins are in my head so I use a soft band.
For a long time my blogs weren’t showing on my Facebook so I am testing it again.
I can’t believe I am nearly 37. It feels weird. So many times I was told I wouldn’t live and here am.
Last week our PM said he was blessed not to have had any children with a disability. While I am not very religious I and a lot of others actually feel blessed to be the way we are.
Life is hard and unfair sometimes but no one is perfect. I am lucky because I have a wonderful supportive family and some great friends who help me in many ways.
I feel if people say things like that it means they think that people with disabilities are unworthy of living. This is so wrong everyone deserves a chance to live their best life. We are all equal and deserve the best life possible.
I understand not everyone can handle having people with different abilities but I believe that most are great at what they do.
I am happy being me. I am learning every day and am in a great place. I have some amazing friends who have helped me to be a better person. I have a wonderful family who loves me no matterwhat. There isn’t anything I would change except for some of my anxiety and obsessive behaviours.
You may not know when you see me but I am actually legally blind. I have bilateral colabomas in the optic nerves. Because of this I have light sensitivity, difficulty with depth perception and facial recognition. One eye is smaller than the other.
I also need to hold things close and sometimes need to lean close to see. Because I am also deaf I will lean heavily on things while walking, squeeze people hard to help me balance and hold things close to hear and see.
Lately my left eye has been having more glare problems than usual. It also has been sore and watery. I think my cataract may have enlarged and need removing.
I had a lovely Easter weekend. On Friday me and mum went to the Taronga Zoo wildlife retreat. It is a beautiful sanctuary in the zoo with beautiful views over Sydney harbour and the zoo.
The rooms had floor to ceiling windows where you looked out the window into the trees and Koala’s. The food was very yummy and I ate hot chips. We walked around the Zoo and the Sanctuary both were amazing. In the Sanctuary a small animal hopped onto my footplate and started eating.
On Saturday we went into the City and had a walk around after my neuro feedback appointment. We got me some new t shirts and then we came home. On Sunday we just relaxed and cleaned out my wardrobe.
Yesterday we went to Barangaroo. It is very busy and populated but the reserve is lovely and quiet. Walking around to Circular Quay it was a lovely surprise to see a cruise ship in the harbour as this means things are finally back to normal after over 2 years.
Over the years I sometimes can and have been very attached to cetain people to the extent where I sometimes pushed them away. I say it is common in CHARGE syndrome but I feel like it is common in many other disabilities to because we can’t exactly just go and do things without planning.
It has taken me a long time to be better and sometimes I still struggle. But I feel what has helped me is stepping away from things that connect me to people for a bit. One example is people on Facebook or messenger. If I am messaging certain people too much and not giving them time to answer I will put my phone or Ipad down and read, spend time with family and friends or even just relaxing. If I’m obsessing on people at home or even respite and Lifeskills I try to talk to other ppl or go into my room and do something else.
It has taken me a long time to get to this point but I keep trying every day because I value the people I do have in my life, but I also value my own health and happiness. I didn’t get here easy. It took people blocking me, people telling me If I kept it up I wouldn’t be able to be with certain people again and just trying to broaden my networks. Basically that means on fb not talking to the same people all the time or in respite talking to the other clients that come in on the weekend.
I think I will always need to work at it but I feel happy with how far I have come. I have stronger connections, better health and a happier mindset. Some things I like doing on my Ipad that isn’t talking or looking at social media are colouring, playing word games or card games, watching different things and also just reading.
I believe everyone can try some of these things and it will greatly help. People may not always come back but I have learnt the true friends and family always will no matter what.