SA CHAMPION

Jesse smiles with dark brown hair and a cross earring, wearing a patterned shirt and necklace.

Jesse Johnson (he/him)

LIVED EXPERIENCE
Disability, Acquired Brain Injury (Stroke)

KEY INFORMATION

Place of Birth: Adelaide, SA, Australia
Current location: Adelaide, South Australia, Australia
Age: 28 years old
Language/s: English only
LGBTQIA+: Yes
NDIS Participant: Yes
Diagnoses: Severe stroke due to AVM rupture (2018)
Healthcare Access: Primary Health Care, Mental Health, Allied Health, Secondary and Tertiary care

BIO

In 2018, at only 25 years old, Jesse suffered a severe stroke because of a ruptured AVM (Arteriovenous malformation) and was left in a coma on life support. During his recovery Jesse had a tracheostomy (meaning he was non-verbal) and fed via a PEG tube. He spent 6 months in rehabilitation to improve his nutrition after extreme weight loss, learn how to stand, move, walk, swallow and improve his motor function and speech. Still in weekly rehabilitation, Jesse is navigating the ways of life as someone with a disability due to acquired brain injury (ABI), and accesses NDIS support. His insights through his experiences in health care and outside of hospital, as well as his perspective as a young man in the LGBTQIA+ community, are very valuable to organisations. Jesse hopes to continue to improve his own capabilities through his rehabilitation, whilst improving the health, education, social and housing systems to better adapt for people with disability and ABI.

ACHIEVEMENTS

  • Got his licence back after numerous OT driving hours, while learning to use car modifications to suit his disability

  • Getting accepted into university after a major stroke

  • Weaning off a tracheostomy tube and Percutaneous Endoscopic Gastrostomy (PEG)

  • Re-learning gait training after having a stroke

LINKS