Enrique
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Enrique has hydrocephalus, a neurological condition which he describes as an invisible disability. He lives with urinary incontinence and has difficulty remembering and planning things. He also has haemophilia.
Enrique told the Royal Commission that because people can’t see his disability, and because the condition is not well known, he faces discrimination and struggles to receive appropriate support.
The discrimination began at school. His high school teachers did not understand his disability or know how to support him and, as a result, he was often excluded from sport and other physical activities. He was bullied because of his exclusion.
‘I viewed myself as a lesser person. I also had a lot of trouble making friends and keeping relationships.’
The school, and Enrique’s subsequent employers, did little to build understanding and acceptance.
He now works full time, but his disability leaves him fatigued. He believes, however, that disclosing his disability to his employer would harm his career.
He did disclose his disability to his local council, seeking a disabled parking permit to more easily access workplaces and toilets. The council refused the permit.
‘The disabled permit scheme is heavily biased towards physically obvious disabilities that affect mobility but it doesn't accommodate for or address the needs of people who might require or benefit from access to permits for other reasons.’
Enrique said there was little understanding of people with hydrocephalus even when he went to disability clinics for treatment.
Enrique described the NDIS as having ‘a wonderful positive impact’ on his life, but because he has an ‘invisible disability that is largely not known or understood’ he fears the scheme’s independent assessment process means he will lose support.
‘I believe the current NDIS independent assessments program should be scrapped and proper co-design and collaboration needs to occur across all disability groups and scheme participants to make the NDIS fairer and more representative for all who need it.’
Disclaimer: This is the story of a person who shared their personal experience with the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability through a submission or private session. The names in this story are pseudonyms. The person who shared this experience was not a witness and their account is not evidence. They did not take an oath or affirmation before providing the story. Nothing in this story constitutes a finding of the Royal Commission. Any views expressed are those of the person who shared their experience, not of the Royal Commission.