How understanding my own disability has allowed me to better engage with volunteers.
What is the best way to support people with invisible disabilities to volunteer? Regional Program Manager Marijke Fotia shares 3 tips from her own experience as a person with an invisible, dynamic disability.
December 3rd is International day of People with Disability. Many advocates call for this to be a day to hear from people with a disability so in today’s blog I am sharing my story and experience in working and volunteering with a disability.
Over the past 3 years I have come to terms with chronic Migraine. Migraine is considered chronic when you have more than 8 Migraine days a month and at least 15 headache days a month. Migraine attacks for me can include vertigo, brain fog, exhaustion, nausea, numbness and tingling in my hands and face and visual disturbances along with the more expected blinding headache. When I’m doing well I average 1-2 attacks a week, when I’m not doing so well it can be daily. One way to describe disability like this is ‘dynamic disability’ a term I read first through the work of disability advocates like Carly Findlay and Natalia Hodgins.
So how can volunteer engagement practitioners support people with dynamic disabilities to volunteer?
One of the challenges I’ve confronted is not knowing how I will feel one day to the next and the thought of committing to a regular shift can be scary. Worried that I may let the team down if I don’t show up for shift and what happens if I get an attack whilst volunteering? Here are some ways I have adapted my work and volunteering to manage as well as feedback from other volunteers I’ve engaged with.
Virtual volunteering
Being able to volunteer from home at times that suits the volunteer can be one option. At Volunteer West we have supported a volunteer who has a range of chronic illness and disability. Working with her we developed a role that allowed her to work on cleaning up a database. She is able to log on when it suits her and we communicate mainly over email and zoom. When we can, we meet up for a coffee with other volunteers so she still has the connection benefits of volunteering. Other examples of this could be social media and communications, writing policies and procedures, sorting donations or putting together mailouts.
Buddy systems
Outside of work I also volunteer at my daughter’s school breakfast club. This is a regular Wednesday morning activity. I was nervous to commit but we have set up a buddy system, someone I can contact on the day if I am unable to attend who can step in for me. This gives me sense of security knowing I’m not letting the school down and has also created a stronger sense of community within the group volunteers knowing we are all there to support each other.
Scaling up and down
Sometimes people can commit more hours, other times less. Being adaptive to their needs and having options to scale up or down their time commitment is another way to support people with dynamic disability to volunteer. This is also how I manage working with disability.
Having a dynamic disability may mean different types of adjustments but volunteers I have spoken to have said they enjoy building connections with people and learning new things, it gives them things to talk about with friends and family and a sense of purpose whilst making a contribution and using skills and experience.
My final piece of advice – ASK - ask us how we want to engage, ask us what we would like to contribute and ask us what we need to make it work.
We may struggle at first to ask for support (I certainly did) but once we have that support we can bring a wealth of knowledge and experience to your organisation.