Whaikaha me te Mate Pukupuku – Disability and Cancer Project

Te Aho o Te Kahu is working with the disabled community reviewing data and evidence on the incidence, experience and outcomes of disabled people with cancer to build our understanding of how we can improve cancer services for disabled people in Aotearoa.

Disability and Cancer Project

There is limited research on the incidence, experience of cancer, and cancer outcomes for disabled New Zealanders but we know disabled people can experience poorer health outcomes.

Our State of Cancer Report published in 2020 showed there are gaps in our knowledge about what cancer outcomes look like for disabled people. This project will help Te Aho o Te Kahu build our knowledge of available data and evidence, and gather insights on the experience of disabled people with cancer.

Te Aho o Te Kahu wants to work with disabled people, and the disability sector to build a trusted, respectful, person-centred relationship that can support our organisation to ensure we have the information we need to begin to influence the equitable delivery of cancer services to disabled people and their whānau in Aotearoa.

With around 4,600 Deaf people in New Zealand and 23,000 Kiwis regularly using NZSL (2018 NZ Census), our kaimahi | staff are using New Zealand Sign Language (NZSL) Week to learn and practice this useful language. We will be having a go at signing a karakia | blessing, a waiata | song, and some useful everyday phrases. This is one way we can help connect with the Deaf community, especially those people and whānau who are living with cancer.

Meet the Lived Experience Advisors

In May 2023 we invited disabled people to express their interest in joining the Disability and Cancer Project as one of two Lived Experience Advisor roles.

Thank you to everyone who took the time to submit their interest. We had an amazing level of interest in this work, so we created a third advisory role, and selected three people from the pool of applicants.

What the lived experience advisors do

The Advisors share their knowledge and experiences to inform system planning across the cancer system to reduce inequities to access and services that many disabled people experience. Their role includes:

  • attending project meetings (virtual) as required
  • providing a whaikaha Māori or Pacific disability lens
  • reviewing project documents such as literature review, data, evidence gap and current state analysis
  • advising on stakeholder engagement.

The Disability and Cancer Project team meets virtually for one hour every fortnight.

There is a sign language video on their role below.

Introducing the Lived Experience Advisors

We are delighted to welcome Amr, Dairne, and Wendi to the Disability and Cancer Project as the three Lived Experience Advisors. Together they bring a high level of knowledge, connections and a diverse range of experiences and insights. Their insights, along with available research and some data matching we are doing with the New Zealand Cancer Registry, are building our understanding of inequities and barriers within the cancer system that impact outcomes for disabled people with cancer.

Amr, Dairne and Wendi have generously shared their experiences and why they applied to join this project, which you can read below.

Amr

Amr knew they needed to see a doctor – they just didn’t know how to find one. The 22-year-old migrant had never known what a GP

was when they began to feel unwell. “I grew up in an underdeveloped region and had never been to hospital in my country of origin. So when I started to get sick here, I had no idea how to seek medical help.”

Amr is also autistic and has learning disabilities, which added extra layers to their challenges.

“I didn’t know how to proceed in new social situations. Even after I figured out where to go to, I couldn’t think of what to do or say after I walked through the door. I am not great at communicating in stressful situations, and I lacked the English vocabularies to explain what was happening to me.”

Amr waited for as long as they could, but as time went on their health got worse, to the point that they were in constant pain and could not pass any bowel motions or eat.

“It took me a year to figure out how to see a doctor. But when I saw them, they didn’t really understand what was wrong and no one took me seriously. They all

thought I was just looking for excuses to escape my exams.”

“Eventually I went to the ED and refused to leave. They finally did some endoscopy and found that I had cancer.”

Despite knowing they had cancer, Amr was relieved they had an answer.

“It was really lucky that I somehow figured things out and had the courage to advocate for myself at that crucial time. Normally, I would be too confused and shy to make such demands or cause any trouble.”

“It felt like if I took one wrong step, I would not have survived.”

Amr had urgent surgery and then went through a rigorous treatment regime while studying full time. It was especially difficult for them, as they had no family support and no stable place to live.

“I was homeless for a period and shifting every few months. Following some treatments and medical procedures, I would be told someone needed to pick

me up, but I often didn’t have anyone and ended up taking the bus.”

“After surgery I would be advised not to lift anything heavy for a few weeks, but I had to get groceries and carry them home somehow, and a few times I had to move accommodations within days after a surgery.”

“My medical team was lovely, and the youth workers from CanTeen really helped me get through the hardest part of treatments. But a lot of the time I was extremely anxious and lonely with no one to talk to.”

Amr’s invisible disabilities are often unnoticed and overlooked.

“People often do not believe that I’m disabled or understand what it means. Even after I explicitly disclosed that I’m autistic and I prefer written communication, medical professionals would still often refuse to read my written notes and insist that I should speak and ‘overcome my shyness’.”

“Things that are common knowledge for neurotypical people do not come naturally to me, and I had to figure everything out by myself and learn very fast. I had to keep track of everything and take care of

myself, which has always been very hard for me. But there was no support for that.”

As a migrant Amr was often made to feel unwelcome and a burden to the country. At their lowest point, they did not seek medical attention when they needed to and thought about ending their own life.

“Many times I was told by people, sometimes by other patients, service providers and even some medical professionals that ‘New Zealanders’ are dying because migrants like me were ‘cheating’ and ‘stealing’ their medical resources. Some even told me that I should go home and die there instead.”

“For many years and even now still, I suffer from this mixture of internalised ableism, xenophobia, and racism. I often worry that I took too much space and feel guilty that I do not deserve to be here or be alive.”

After a gruelling period of treatment, Amr’s cancer was in remission. They struggled for another few years to get back on their feet and eventually moved on to study law and began advocating for the rights of asylum seekers, refugees and migrants living in Aotearoa.

Amr decided they wanted to work with Te Aho o Te Kahu to help improve the experience of people from marginalised communities going through the cancer system.

“Being from a minority background, whether it’s our ethnicity, immigration status, being LGBTQIA+ or disabled, our voice is often ignored and deemed ‘out of scope’. I refuse to let my experience be irrelevant and unspeakable.”

“There were no resources or support that were designed towards my situation, which made the experience so much harder. But now we are raising awareness and building knowledge and support on these issues and we hope to bring changes.”

Amr says their entire life changed following their diagnosis, but they are grateful to be able to make the most of life now.

“I have learned to go with the flow, wherever things take me I try and make something out of every situation I get into. Life isn’t a straight line.”

Dairne Kirton

Being diagnosed with breast cancer changed everything for Dairne Kirton.

“I was diagnosed in 2008. By 2010 the cancer had spready significantly, which resulted in a double mastectomy, chemotherapy, and reconstruction.”

It was in the reconstruction phase that things became particularly problematic. Dairne has one arm, her left arm is shortened with her hand consisting of three fingers, this made the surgery more complex. 

“Because of my impairment, and unusual shaped breast plate the right breast implant did not sit symmetrical and quickly shifted around and settled under my armpit. The situation remained like this for another two years. My confidence and self-image took a very big hit, and I hid away from life at home during this time.

“It was obvious the surgeon and medical team had not fully considered how my impairment would impact on my reconstructive surgery and the likelihood of any complications due to lack of thorough pre-op checks and awareness of diverse human anatomy.”

Dairne had to fight for the surgery to be corrected. It was an exhausting ordeal while at the same time trying to rebuild her life following the diagnosis and treatments.

“There was very little consideration and support as a disabled person. If I had been listened to respectfully about my impairment, and this had properly been taken into consideration, the surgery would have likely turned out different.

“I tried to get people to listen to me and point out disabled people were not being properly consulted or considered, but I was met with many closed doors.”

After getting the surgery rectified, Dairne started to think about what changes were needed to ensure disabled people who were living with cancer and using the health system had a voice, choice, and better cancer outcomes.

“I was extremely blessed to have two aunties who advocated while I was unwell. It allowed me to focus on my treatment, rest, reconstruction, and recovery while they sorted out any issues to support my wellbeing.

“It is concerning that advocacy for disabled people is still so required within our health systems. Not every disabled person has whānau or friends to support and advocate on their behalf.”

“If you are a disabled person and going through cancer, I truly don’t recommend taking the journey alone. If possible have whānau, friends or an advocate go with you and support at appointments – you really need as much support as possible during treatments.”

When Dairne saw the Disability and Lived Experience role advertised by Te Aho o Te Kahu she decided to apply in the hope she could contribute to improving the health system and the experiences and outcomes for disabled people.

“I did not want to miss the opportunity to share some of my journey and experiences positive and negative. hoping to create better inclusive, considered and implemented cancer care options for disabled people.

“I am delighted our health system is starting to create equitable health services in consultation with disabled people that include and value us as equal citizens of Aotearoa.”

A lot of time has passed since Dairne was diagnosed. Her life has been changed forever by her experience, however some changes are good.

“I have a healthy work / life balance now. My wellbeing and whānau are of greatest, importance to me. I have learnt that I am not my best version of me without them, they are me and I am them.

“I have also learnt that tomorrow is not promised, it’s important to do something that counts today.”

Wendi Wicks

Wendi Wicks has dedicated her life to advocating for people who live with a disability. Her own life changed when she was diagnosed with a brain tumour in her early 30s. The diagnosis left Wendi with multiple disabilities. “At the time the cancer system was less accessible with few resources or support to help people in my position. I seemed okay but there were gaps – like work.”

A trained radiographer, Wendi was unable to continue with her work following the diagnosis. She decided to retrain as a social worker.

“I looked for some other things I could do that would use my brain and my skills. I ended up doing a social work degree, then a Masters and from there I moved into disability policy via employment equity. So many disability issues needed attention.

“I worked for a disabled persons organisation that was focused on advocacy. It often involved representing disability to government departments, ministers, and anybody else who could benefit from listening.”

In 2021, Wendi was again diagnosed with cancer – this time the tumour was in her breast.

The cancer in her breast was picked up during a routine mammogram. Because the cancer was detected early, the outlook is a lot better.

“The experience of the health care system this time around was different. Not everything was perfect, but things were explained to me in a straight-forward way, and where there were options, the pluses and minuses were explained.

“Despite pandemic lockdowns I got timely treatment and support. I was lucky, so many others hit barriers of various kinds.”

It was these experiences that drew Wendi to want to work alongside Te Aho o Te Kahu to improve the experience of disabled people in the cancer system.

“Having heard so many stories from other people in the disability community – and knowing what it is like from the inside – I thought I had something to offer.

“I have a very strong sense of giving back to a disability community that has given me so much.

There’s a lot of disability discrimination built into the system so it is incredibly important we try to ensure we make improvements for disabled people where we can.”

“Disabled people make up 25 percent of the population – right now I do not think we are fairly represented or looked after. The disability-cancer project is so useful for the wider community.”

Wendi has some simple advice for disabled people trying to navigate the cancer system – don’t do it alone.

Taking someone along to listen and take notes can make a big difference.

“I regretted that I did not always have people surrounding me when I went through my breast cancer treatment. It is a very useful thing to have.

“My cancer outlook is promising, so if my work with this project improves the outlook for other disabled people, I will be pleased to have been part of the enterprise.”

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