Invisible disabilities require constant justification

03 December 2020
Anonymous

December 3 is International Day of Disabled Persons. This year’s theme is "Not All Disabilities Are Visible".  

MDANZ member and Central Region Fieldworker Talitha Vial shares her story of living with a disease that is not always visible.  

By Melanie Louden

Some days are better than others for Talitha Vial who has Myasthenia Gravis. 

When you think of someone with a disability, people like Talitha Vial may not instantly spring to mind.  

She’s an actor, Toastmaster member, wife and mother, committed member of her community and a busy and dedicated MDANZ staff member. She also has Myasthenia Gravis.   

Myasthenia Gravis (MG) is one of the 60 neuromuscular conditions covered by the Muscular Dystrophy Association of New Zealand. Talitha and other people with the condition, can walk into a supermarket just fine, then suddenly feel the full effect of the condition as their body starts to shut down. 

Talitha describes what happens to her body; “I start to get brain fog, my body starts to lapse out on me, I fade like a flower, my legs go from under me, my body just completely turns off.” 

The Pahiatua resident has many stories of when the effects of her condition kick in – whether she’s been out to dinner in a restaurant or part way through the grocery shopping.  

“I went to the supermarket once and halfway round I realised I wasn’t ok. I cut it short and managed to get to my car with my groceries.  

I was attempting to load them into the car when this really old man with a walker said, ‘you don’t look ok. He finished loading the groceries for me. 

Talitha, a member of the Central Region Branch for 25 years, says her body can fade on her gradually, or quickly.  

“Some days I know I’m going to have a bad day. Other days it comes on really quickly. It’s just the nature of the disease. 

“You can walk into a place and be absolutely ok….but by the end of it….” 

Some days she can walk, other days she needs her scooter. 

Talitha, 43, says there is a lot of judgement around when it comes to people with disabilities that aren’t visible.  

Judgement from other people comes from the symbol of the wheelchair. People think if you don’t have a mobility aid, you’re not disabled. 

“As long as people see you with something like a mobility aid, they say ‘ok’. But when they don’t see anything....... 

“You constantly feel like you have to justify yourself.” 

Talitha says she works hard to educate people about disabilities and Myasthenia Gravis, in particular. 

“I’m completely open about my condition. I’m committed to being an advocate and spokesperson for making something out of adversity.” 

And she has a simple message for people who see her, and others with a disability, visible or otherwise, out and about: “have Myasthenia Gravis, I am not Myasthenia Gravis. Myasthenia Gravis does not define me. 

<END> 

About Myasthenia Gravis (MG) 

Myasthenia Gravis is a chronic auto-immune neuromuscular disorder that leads to rapid weakness and fatigue of the voluntary muscles of the body. Characteristically, individuals with MG experience muscle weakness that increases during periods of activity and improves after periods of rest. 
Click here for more information.   

About International Day of Disabled Persons

December 3 is International Day of Disabled Persons. The 2020 theme is ‘Not all Disabilities are Visible’. It focuses on spreading awareness and understanding of disabilities that are not immediately apparent, such as mental illness, chronic pain or fatigue, sight or hearing impairments, diabetes, brain injuries, neurological disorders, learning differences and cognitive dysfunctions, among others.   
Click here for more information.  

For more information please contact: 
Melanie Louden
Communications and Marketing Advisor
Muscular Dystrophy Association of New Zealand
027 509 8774
[email protected]