One of the advantages of our work with Inclusive Volunteering is the number of success stories that we see through the integration of people with disabilities in the workplace. We would love to share some of these stories with you so that they might inspire you to help build a bridge within the community.
Although Erin was once able to work as a support worker for people with disabilities, due to acquiring a multitude of physical and neurological disabilities, including dystonia a neurological disorder, which left her unable to walk, as well as chronic fatigue syndrome after glandular fever and also acquiring partial hearing loss in one ear and profound in the second, she made the decision to cease work – although she wanted to remain active.
At first, Erin volunteered at a Save the Children Op-Shop for one day a week, however, due to the progressive nature of her disabilities, she had to reduce her time at the Op-Shop to half a day a week. After ceasing work at the Op-Shop, she volunteered as a helper at the tutti ensemble which has a day option program for people with intellectual disabilities, as well as a community choir, where anyone can join. Erin was involved in the tutti ensemble and community choir for six months. Erin had planned to teach a young girl with Down Syndrome the violin, however, due to a quick deterioration in Erin’s health, it never eventuated.
Erin also volunteered with Uniting Communities with an elderly man who was socially isolated for an hour a week. Erin was an amateur musician, despite her hearing loss and this gentleman wanted to learn how to read and play music in his 80s. Erin was unable to enjoy music for a while, due to her severe hearing impairment and being unable to play the violin/viola. However, when she went to the hearing solutions service within Guide Dogs South Australia, they showed her an FM system, which enabled her to hear. An FM system consists of a transmitter and receiver. She was able to play the violin/viola again.
In 2008, Erin’s condition deteriorated drastically overnight, she virtually went from being able to walk to needing a wheelchair and a lot of assistance. Due to the further deterioration in her health, Erin was no longer able to continue her volunteering roles in the community. However, she became very active in online forums and Facebook groups.
In 2008, a specialist mentioned that Erin had dystonia, but was given very little information about the disease. One day, after curiosity getting the better of her Erin decided to google the disease and found that there was no help for people living with dystonia in Australia. With the help of the American Dystonia Society, Erin formed a chat group, using their chat room. She volunteered by finding people from across the country. From her chat group, a Facebook group was formed and in 2015 a new charity was formed called the Dystonia Network of Australia. From humble beginnings, there is now a place for newly diagnosed patients to go for information and support. Erin was officially diagnosed in 2010.
Later Mitochondrial disease was suspected by multiple specialists. Erin found multiple Facebook groups and email lists supporting patients suspected or diagnosed with the disease. Most of these groups are worldwide. One Christmas, Erin volunteered for a new group called “Mito Wish Upon a Star”, this is a US-based charity that has volunteers who sponsor children who have mitochondrial disease. Often, parents of children with this disease have no money to get their kids a Christmas present, so this is what the sponsor does. The parents give the suggestions and the sponsor buys the present and posts it. This group is still active today and 2015 will be Erin’s fourth time of being a sponsor. Erin has also been involved in the fundraising efforts of the charity.
In mid-2012, Erin’s health drastically declined again and she became bedridden. Despite being bedridden, Erin has established a Facebook page to sell craft and cards, where all the profits go to “Mito Wish Upon a Star”. Erin also wanted to support a local charity and has received a lot of support from volunteer peer advocates from the Adelaide charity called Bridges and Pathways Institute. That is why Erin chose to also raise money for this charity as well. They are raising money for testing chronic fatigue syndrome patients for mitochondrial dysfunction, as well as a new clinic for Chronic Fatigue Syndrome patients.
Erin loves volunteering despite her own significant disabilities.