Kylee Black is the face behind The Soul Lounge, a pop-up marquee at this weekend's Festival One. Photo / Alan Gibson.
Kylee Black doesn't want anyone missing out on having fun.
The 32-year-old Hamiltonian is on a mission to break down barriers around disabilities and accessibility to events.
She is the face behind The Soul Lounge, a pop-up marquee at this weekend's Festival One, a three-day Christian music event at Mystery Creek.
The Soul Lounge helps people with disabilities to fully participate in the festival.
Kylee knows exactly what it's like to face accessibility barriers.
Ten years ago she was diagnosed with Ehlers-Danlos Syndrome (EDS), a genetic connective-tissue disorder.
EDS causes a person's collagen — the protein that binds cells together — to lose its elasticity, which leads to repeated dislocations, broken bones, and joint, skin and ligament problems.
Treatment ranges from medicines to treat the side effects of EDS such as low blood pressure and soft tissue injuries, to surgery, physiotherapy and pain medication.
Kylee uses a wheelchair and is tube-fed, but that hasn't slowed her quest to raise awareness about EDS and accessibility.
The Soul Lounge is in its third year and Kylee has been involved from the start.
This year's marquee is near toilets and showers, which can be accessed by a concrete footpath.
It has a powered facility for medical devices, a space to charge powered wheelchairs and a small fridge to store goods for medical purposes.
Fans, beanbags and couches will make for a cool and quiet space for people with disabilities and their families and friends.
A raised platform for wheelchairs at one of the stages, One Arena, will also be available for use.
Next year, Kylee hopes to have a fully accessibly adult changing table at the marquee.
Volunteers will be on hand to assist people, help them to explore the festival and provide accessibility information.
Kylee has also thought carefully about transport.
An accessible car will be shuttling people from the carpark to The Soul Lounge and back. There are also parking options available for those with disability passes.
A company called SupaScoota is lending mobility scooters to people with access issues.
Kylee is expecting people with disabilities from all around the North Island to be making use of the free marquee.
She says the festival's accessibility measures set a strong example for other events.
"I don't know any other festivals in Australasia that are fully accessibly," she says.
Kylee is a public speaker and advocate for accessibility and will be speaking at The Soul Lounge on Saturday at 2pm.
Husband and wife Auckland and Teremoana Va'a will be speaking at the Soul Lounge on Sunday at 2pm.
The previously able-bodied couple will share their story of unexpected disability.
Kylee says helping to organise The Soul Lounge is motivating.
"It's the thing that keeps me alive — seeing people connect, build community and break down barriers."
"The Soul Lounge is about putting people first and making the festival accessible for everyone."
"When you strip everything away, we're all just people — we're all souls."
The Soul Lounge is on the corner of E Street and ANZ Bank Road, Mystery Creek.
Festival One gates open tomorrow at 10am and close on Monday, January 28 at midday.
Kylee wants to hear from organisations or businesses keen to support The Soul Lounge.
For more information contact Kylee on 0274 690927 or check out The Soul Lounge at Festival One.
The photo purportedly shows him scaling down from the eighth floor.