In this reflection, EJ Barrett shares their journey with Ehlers-Danlos Syndrome and the transformative impact of embracing the identity of being disabled.
From navigating invisibility and misunderstanding to finding empowerment through the Hidden Disabilities Sunflower Scheme, EJ’s story highlights the importance of visibility, language, and community in fostering dignity and support for disabled and chronically ill individuals.
My name is EJ Barrett, and I was a wheelchair user for two years.
I have a hereditary condition called Ehlers Danlos Syndrome. It makes my joints bendy, my veins loose, my senses sensitive, my skin stretchy and my muscles fatigued.
Before I started using a wheelchair, I was struggling. My health was declining. My fatigue was unmanageable and I could barely hold myself up, but I would push myself to get to the supermarket and other appointments. People in the street seemed to be scared of me, as if I was drunk instead of unwell. I would think, “if people could only see that I was disabled, perhaps they would offer support.” But my disability was invisible.
When I was travelling through airports to get to specialists around the country, I discovered the Sunflower Lanyard Hidden Disabilities Scheme. It’s a discreet wearable symbol that I could put on when I needed to signal to a flight attendant or airport worker that I needed support. It also signaled to other passengers in the know to be patient with me- that I was moving slowly for a reason. It was incredibly empowering to use a communication system where I wouldn’t have to beg or apologise for the support I needed to simply participate in society.
“Disabled” is not a dirty word.
“Disabled” communicates to other people that I have needs that are different. It tells people that if I make unexpected noises, I’m not being rude, my brain is responding to sensation. It tells other parishioners that I’m not avoiding standing up during mass out of insolence or disrespect, but because my legs don’t work the same as everyone else’s. Walking is easy for me, but standing still is difficult.
“Disabled” helps me to connect with other people with shared lived experiences. Much like how the word “Catholic” helps me to connect with other people who were raised in the church.
“Disabled” tells other disabled people that I’m a safe person to reach out to. For me, the word “disabled” brings understanding and respect.
Thankfully, with a lot of difficulty, I found treatment that has strengthened my body and I no longer need mobility aids. I still have difficulties that I am managing, but in some ways I feel like I have moved backwards. I’m back to being perceived as eccentric, instead of disabled.
David Loving-Molloy from Palmerston North is launching the same Hidden Disabilities Sunflower Lanyard Scheme across the diocese, and I’m really excited for what this could mean for building connection and support across our parish. If you or anyone you know may be interested in connecting with me directly about your own lived experiences, or if you want to learn how to engage with our disabled and chronically ill whānau respectfully, please reach out.
You’ll see me wearing a sunflower lanyard.
