Rolling into disability advocacy

Leanne Watson was diagnosed with limb girdle muscular dystrophy at age 42. (Ivan Kemp) 448602_03

Drysdale’s Leanne Watson recently received a Volunteering Award at the Geelong Awards for People with Disability for her community advocacy. She speaks with Jena Carr about the changes in her life that led her on a journey to normalise disability.

Leanne Watson was an active mother of three teenagers with a lively social life and various hobbies when her life would change forever.

Leanne lived an ordinary life unaffected by the societal and individual impacts of disability before a blood test in 2007 spiralled her into the world of muscular dystrophy.

“At the age of 42, I was diagnosed with limb girdle muscular dystrophy (LGMD), which is a neuromuscular degenerative muscle-wasting condition,” she said.

“Over the last 17 years, that’s very rapidly progressed. There are over 30 types of LGMD, and there are a lot of subtypes, and so far, my subtypes have not been identified.

“Because I manifested the symptoms at a later age, doctors thought it would be a slow progression. However, that has not happened, and I now not only don’t have use of my legs, but I also don’t have use of my arms.

“I was more restricted with visiting friends’ houses, gardening, and quilting, with all my hobbies winding up pretty quickly, so I turned to writing and blogging on my website, Leanne’s Wheel Life.”

Leanne could walk unassisted for the first three years since her diagnosis. She could shower herself until nine years ago, move from one seat to another until eight years ago and turn in bed until six years ago.

Four years ago, she lost the ability to raise her arms. The now 59-year-old Drysdale woman is a power-wheelchair chair user with limited use of her hands and a passionate disability inclusion advocate.

“My husband and I moved down to the Bellarine about six years ago, and since then I’ve still been writing and blogging,” she said.

“I did a podcast with Loretta Hart for Loretta’s Front Page (radio program) at 94.7 The Pulse, and she invited me twice to interview with her.

“She then offered me my own show after the second interview, which was quite a shock, and I never expected to do that as my background is bookkeeping.

“My husband’s the talker out of the two of us in the family. I don’t do too badly at it, but he’s way more professional about it all. So, it’s been a great learning curve.”

Leanne hosts her radio show Rolling Through Wednesday with her support worker and friend Andrea Tierney at 4pm each Wednesday on 94.7 The Pulse.

Andrea, a Rotary Club of Ocean Grove member, met Leanne close to 18 months ago and said their relationship had “really developed” not just as support worker and client, but as friends.

“I feel like Leanne just lives every day to the fullest and, whether your able-bodied or not, that’s inspiring,” she said.

“She’s incredible at advocacy and so passionate about doing it, so I’ve been taken along for the ride, and it’s been awesome.

“My daughter had been one of Leanne’s support workers, and I got into doing some support work too. I just happened to be the person that brought her to the interview with Loretta Hart.

“I should have got there before she did, but I walked in and there’s this lady with these awesome floral pants on and drinking a champagne. As soon as I saw her, I knew we were going to be friends.”

Leanne and Andrea’s radio show discusses disability, inclusion, community and hope while highlighting people living with disability in the Geelong community.

“94.7 The Pulse is all about diversity and inclusion and they’ve really come to the party and allowed me to be a voice to and for other people with disabilities,” Leanne said.

“We chat with people living with a disability on whatever they want to talk about regarding their story, what sort of messages they might have, their achievements, or how they live their life.

“It’s always cathartic for the person sharing, and… it meant that people with disabilities could find some solace that other people were going through the same thing or similar.

“We also have a segment called ‘Inspect-Our Gadget’ where we… talk with people about the assistive technology or apps they use that make life more comfortable, easier or convenient.

“It’s quite a unique show that you just don’t find on commercial radio. I’m really grateful that I’ve been given this opportunity to share information that allows people to access what they can.”

Leanne received the 2024 Geelong Awards for People with Disability’s Volunteering Award at Geelong Library and Heritage Centre on Tuesday December 3.

She said the award humbled her and that it was important to get more community recognition for people living with a disability, their families and carers.

“No one volunteers to get an award, and there’s people that do a lot more than I do in the terms of visibility, inclusion and general volunteering,” she said.

“My quest is about shoving disability in as many faces as I can to make people feel more comfortable because I hadn’t known anyone with a disability before myself.

“The way you approach life is not about worrying about what’s being done to you; it’s what you can do from now on, and that’s the only way I feel you can live a quality life.

“Try to deal with what you’ve got with humour and appreciate the people around you or what you’ve got in your life… I also don’t like saying ‘no’ too much.

“You take the support that is around you more for granted when you’re able-bodied, but none of us can succeed or do as much as we can without the community around us.

“There are heaps of people dealing with things… and it’s very hard when you’re tired, worn down and financially stressed to see ahead, and that’s where community comes in and helps all of us.”

Leanne said she hoped that more people who listen to her show or read her blog would treat people living with a disability like everybody else within the community.

“There are people with disability living and working in our community and we need to normalise disability within the community,” she said.

“Let’s not walk past someone rolling down the street and tell them how great it is to see them out for the day or whether they are enjoying their outing.

“One of my husband’s and I’s favourites is that; we were at a shoe shop, and the lady asked my husband, ‘What does she want?’. That was a few years ago when I was in a manual chair.

“I’m hoping that people, including myself, learn to look people in the eye, to say hello, and if they look like they need help, just ask them. They can say no, but you can ask.”