We Have a Story but We Seldom Have a Voice

Marine scientist Tony spent many years in Wellington, advising government on issues to do with the use of the sea and climate change.  He took medical retirement in 2022 and misses the challenges, the collegiality and sense of self-worth that his professional life afforded him.

Access has supported Tony since 2014 when a devastating stroke resulted in paralysis on the left side of his body and impaired speech.

“I had the stroke on a Monday, but the physical symptoms did not appear until Wednesday,” explains Tony from his home in Hamilton where he lives with his partner.

“I walked into the ambulance and was carried out of it.”

He then stayed in hospital for three months and has been a wheelchair user since then.

The physical effects of the stroke are hard to bear, but Tony describes the loss of self-confidence as the real devastation.

“You can’t rely on your physical or mental ability,” he says, “It all goes out the window”.

Determined to return to work, Tony fought to retain his job and tolerate a significantly reduced salary.

He credits the Access team for the role they played as he dealt with the dramatic changes to his life.

“They played a crucial role during those early years of reassurance, support and sheer bloody mindedness to keep me going.”

“I was, at times, a difficult client because I was so tense and stressed” he admits. “One of my support workers in particular was a paragon of patience and understanding, always going above and beyond.”

He says that any frustrations with his support are usually caused by communication issues but he has nothing but praise for his local Waikato office team, who work hard to ensure his care is professional and fit for purpose, and that he feels heard.

As a high-needs client, striving for maximum independence, Tony has been involved in some training sessions for new support workers starting in the region. Initiated by Jo Southwick, Regional Manager for Access, Tony is a welcome voice during the training process, with pragmatic advice from a client’s perspective.

“I remind that every person is different and will have individual needs. The right way to scrub one person’s back is not the right way for another person,”

“Many of us are striving each day to have the most independence we can. So please don’t jump straight in and do everything for us. If you would like to help, ask first.”

In late 2024 sepsis caused major damage to Tony’s vascular system in his left leg and he is having to consider amputation. Even as he faces this likely surgery, Tony considers his care givers and the issues it is likely to cause for them.

He says it is a reciprocal relationship between his care givers and himself,

“I need them to be positive, so I can express positivity back.”

With huge determination, Tony pushes aside any ideas of life being just a slow decline, but is very open about the social isolation that he experiences as a wheelchair user.

Tony lives in a relatively new subdivision and although he co-designed his home with G J Gardener for full wheelchair accessibility, he explains that none of the other buildings around him are wheelchair friendly.  As a result, he can’t visit other people or find places to go and connect with his community.

“It’s like being told ‘You’re not welcome here’. I feel excluded – unintentionally no doubt – but excluded.”

Tony adds that having Access around holds the sense of isolation at bay, and that this is an important part of the role of support workers that a lot of people don’t really appreciate.

The lack of inclusive planning, design and general consideration for people of all abilities is not limited of course to Tony’s subdivision. He is full of stories which verge on the absurd including an employment agency specifically helping people with disabilities to find jobs, which was based in a building that was inaccessible.

“Why aren’t we, disabled people, involved in the design and decision making?”

Tony says he feels like yelling in frustration, but questions if anyone would be listening.  Not that he considers his voice or story to be important than anyone else’s.

“People just need to hear what we have to say, no more and no less. Like everyone, we have a story but we seldom