'Representing the Deafblind Community in Victoria'

Posts from the ‘Member story’ category

Member story – Jeanette’s cat Bobyn

Hello everyone, hope you all are well. I just wanted to tell you little story about my cat Bobyn.

My friend gave me kitten, very cute, I fell in love with her. Then 6 years ago, when my husband Frank was in palliative care, my daughter told me that Bobyn was deaf. I was surprised so took her to vet and they confirmed that she was deaf!

Bobyn is very clever, she knew that i am Deafblind. She gets my attention by tapping my leg or shoulder when she wants something. She is very affectionate; loves to nap on my legs and sleep with me in my bed. Loves my support worker Jess too when she came here to support me. Jess always brush Bobyn outside and loves it, meow a lot too.

Unfortunately sadly I had to put her to sleep on June 7th as she has stomach cancer. Only 11 half years young.

I will miss her so very much for ever! I had her cremated. Now i have urn and necklace. Great loving memories of Bobyn.

By Jeanette Loftus.

Medical trial – new drug for Usher Syndrome RP

DBV member Joseph Heenan visited DBV today to share news about a medical trial that he is involved in. Doctors are testing a new tablet to see if it can help stabilise Retinitis Pigmentosa (RP) for people with Usher Syndrome. In the video, Joseph talks in Auslan about the trial. A transcript is below. Joseph doesn’t know if he is taking the real medicine or a placebo! If you want to join the study, click here for more information.

Joseph Heenan talks in Auslan about a clinical trial of a new medicine for RP and Usher Syndrome

Transcript: Hello, my name is Joseph Heenan. I have Usher Syndrome. I’m visiting to tell you about a new medial trial for people with Usher Syndrome. Here are the tablets that I will take for 2 years. You can join the trial too – download the flyer and send them an email to make arrangements. You can test the medicine for 2 years to see if it helps keep your RP stable. It won’t improve your condition but it might stop it from getting worse. Good luck!

International day of People with Disability – Dec 3

December 3 is the United Nations’ International Day for People with Disability (IDPwD), a day to increase awareness, understanding and acceptance of people with disability. To celebrate IDPwD, the ABC has a wonderful project to tell stories by and about people with disability across ABC Online, Radio, TV and iView.

One of the stories told was about DBV’s Joe Monteleone. Here is a short video produced for social media where Joe signs in Auslan and shows his art (transcript below):

Hi my name is Joe. I’m a husband and I’m a father of two. I’m currently a student as a visual artist. I’m doing a diploma and I’m a fourth-year student. I particularly love print making and lino cuts.

I’m deaf and I have Usher syndrome type 1. That means I see a really tiny space in front of me, like a tunnel, and all around that tunnel is black. So during the day, I have tunnel vision and I can only see pinpricks when I’m getting around, but at nighttime I don’t have any vision at all.

From my experience I’ve developed a dream that people in the community can become more aware about people who are deafblind. Please don’t see us as people who are limited and who face many barriers. You know, I’ve been successful enough to complete the kokoda trail and the trek. And many people over the years have always told me that I can’t. I can’t complete things. I can’t do this, I can’t do that. But you know what? I’m really determined to overcome all those barriers that I face, and I really don’t like people saying “no, that’s not possible”. Deafblind people can achieve whatever they want.

Gina Pontelandolfo’s story about macramé and crafts

I’m Gina and I have Usher Syndrome. Now my eyesight is getting worse, things look foggy. I had an operation two years ago but my eyes have changed. It’s sad. However, my hobby for many years has been doing craft – macramé, mosaic, knitting, crochet, etc. I love making different things with my hands and learning new skills. I am always getting ideas for things to make. I can’t stop! At the moment I’m doing macramé – it’s a beautiful craft of knotted cords or ropes in patterns. While some people are sitting patiently at home because Covid lockdown, I’ve been adding crafty things all around the house. Now there’s so many everywhere! Ha-ha.

With macramé you can use one colour or two and weave them together into a pattern. Different thickness of cord will make a different style. Cords can be made from cotton, yarn, or wool – there are lots of varieties. I find very thick cotton cord is too heavy. There is a video and photos of my macramé below. You can try it for yourself and have something beautiful to touch and hang on a wall.

Gina signs in Auslan about her crafts and shows her macramé

Member story – Maree Heenan and swimming

Some of you may or may not be aware that there are many inspirational people with Deafblindness in the world.

What a pleasure to see another inspirational story about a Deafblind woman in Victoria who is one of our DBV members, Maree Heenan. She is well known in the Deafblind community. 

Here is an amazing interview about her sharing her life and her love of swimming at the local Peninsula Aquatic Recreation Centre.

Such an amazing story about her passion for sport and her family as well. 

Click on this link to read the full interview below:

Inspiring Women of PARC: Member Maree Heenan who is deafblind