Jamir

‘I'm so fatigued from having to explain myself … You're on this sort of process of educating people about your particular needs so often.’

Jamir, early 50s, has progressive congenital spinal stenosis and attention deficit hyperactivity disorder (ADHD).

About five years ago, his spinal stenosis started to compromise his capacity to work full-time.

‘I've had to increase my dependence on different technologies and different set-ups to do things,’ Jamir told the Royal Commission. ‘It takes me time because I fatigue, and the pain is also fatiguing.’

Jamir recently enrolled in a postgraduate course.

His doctor suggested he ask for additional time to complete assessments because of his pain and fatigue.

The university told Jamir he needed to meet with an officer from the disability unit to discuss his needs and set up a learning plan.

As soon as Jamir started to explain his needs, the officer interrupted.

‘The young woman said to me, “Okay, so what we're going to put on your form is that you need help with being organised, because you're not good at time management and you lose concentration. And you need some help with – you've written ‘fatigue and pain’ – so I would say concentration issues.”’

Jamir told the officer she was making assumptions and stereotyping him based on his ADHD. He asked her to read the doctor’s report properly.

She kept insisting she knew what she was talking about because she’d done this many times.

Jamir asked to speak to another officer but she said it wasn’t possible. He then asked if he could give feedback about the process.

She told him to email the general email address.

Jamir didn’t feel comfortable sending his medical documents to a general address so emailed asking for an opportunity to give feedback on his experience.

The coordinator replied telling him to use the general email address and they expected ‘respectful communication’ as per the student charter. She also arranged an interview with two officers and gave him the time and date.

‘You're being moved around like an object. I'm asking for an opportunity to provide feedback. I just want a situation where I'm going to be listened to … She decided to appoint two people to work with me, without having heard any feedback, without explaining what that process was.’

At the meeting, Jamir explained that people using the service have had a lot of challenges talking about their experiences.

‘They just want to be met with a service that's going to be supportive and person-centred, and I didn't experience that.’

Jamir said the officers seemed receptive, but when he asked about the next steps they said ‘there is no next step’.

Frustrated the disability unit was unwilling to accept feedback and change their processes, Jamir made an official complaint.

The investigator, ‘who again, didn't understand the challenges that face people with disabilities’, became defensive.

He told Jamir that the officer said he’d been rude and she felt intimidated.

Jamir explained he was assertive but not rude, and suggested they record the conversations.

‘You do want to go to a service that's actually going to understand and will have the training and understanding to work with you, because you want to feel you're going into a place that's going to be safe … It was a bit of a shock to me that the [disability unit] was actually where I would have the difficulty.’

Jamir sent his doctor’s report to the head of school apologising for how long the process was taking.

The head of school told him, ‘Don’t worry about our systems, take the time you need … We are here to support you. What you have sent through is more than enough.’

'That's what I expected from the [disability unit],’ Jamir said. ‘That ability to hear me and see exactly what was going on. “Oh, okay, this person's overwhelmed because they can't meet the requirements because of this medical situation, their disability. And what we need to do is make our system actually accommodate this.”’