The importance of disability advocacy: Shining a light on Aotearoa’s disabled communities
Fiona McKenzie started The Inclusive Academy in 2020, with the help of her son Jasper Sutcliffe. Source: Canta / Rosie Leishman.
The disabled community (hapori) make up a large demographic of Aotearoa. It’s crucial there is consistent care and focus in ensuring the community feel, and are, heard. However, there’s an ongoing epidemic surrounding disability inequality, and the need for constant advocacy and equity – something the community believe the government, and public, should be focusing on.
Programmes and initiatives exist in Aotearoa, facilitated by people who want to see the disabled community thrive. These range from supporting everyday individuals, to students and their education, creative performers and strong-willed athletes.
The Inclusive Performance Academy of Canterbury is a group of keen performers with disabilities who get the chance to dance, sing, act, and express themselves on stage with other tāngata. Fi McKenzie, a Canterbury creative, started the group in 2020 to provide the disabled community with the opportunity to be the ones on the stage, instead of being invited to watch others.
“It’s nice for them to be the ones doing the shit,” McKenzie said.
“Inclusive [Academy] puts their world first.”
30 performers meet twice a week, for three hours across four terms. In every second term, the class prepares for and puts on a show. These shows are an amalgamation of ideas suggested by the performers. If they want to dance to a particular song or play a certain character, they can. With equal opportunity to put their ideas in, McKenzie uses suggestions to create a script.
The Inclusive Academy “puts their world first,” says founder Fi McKenzie. Source: Canta / Rosie Leishman.
With the help of McKenzie’s son Jasper Sutcliffe, musical theatre graduate Ben Jarrett, and a community of volunteers – from parents to caregivers; the Academy has performed shows such as The Wizard of Oz to ones written from scratch like ‘The Journey to Matariki’.
Although there have been similar groups in the past, this is the first performance group that is as streamlined and specific in Ōtautahi, with McKenzie focusing purely on improving performance skills. The community is tight-knit and crucial for filling the gap for those who don’t typically get included in performing arts.
“It's just about being inclusive, putting the people in the background or not in shows at all, in the foreground,” Jasper Sutcliffe said.
“It's a small but big world – if you know what I mean. It's a small world in that everyone knows each other, but it's a big world that not a lot of people see.”
Inclusive Academy are most important for offering people creative choices.
“It's really important to have something like this which is fun, engaging and helps develop skills… when you’re in this world, that means a lot,” Sutcliffe said.
The Inclusive Performance Academy are doing the most for the community. Source: Canta / Rosie Leishman.
The social benefits are equally as instrumental, with a lot of the performers becoming friends through the group. Before Inclusive, many participants didn’t speak much or have the confidence to sing.
But now Sutcliffe said, “you have to try hard to make them stop singing.”
“Everyone has become more vocal which comes from building a base of encouragement and safety… We're not creating a hostile environment, everyone can express the way they want while also being pushed to try hard.”
Inclusive makes room for any health limitations within the group, but they try not to treat anyone differently from how professional actors would.
“Why would we?” said Sutcliffe, “the experience these guys want is to be in a show and act like proper actors because that’s what they are.”
Jarrett, who also helps with Inclusive Academy productions, said the Academy provides performers with the opportunities to grow their stagecraft and skills in a space to come and feel safe. This expands their knowledge and expertise.
“It’s easy for people to live in their own little world around people that are like them.”
“I think it’s so cool for audiences to see people that don't look like them on stage. It’s great for the community to see that they're funny, fun, so caring and although they look or act a bit different, they’re super cool with so many great things to offer.”
Jarrett described a young lady in a wheelchair who is predominantly non-verbal, but in last term's production sang a song.
“She owned the space and filled the room,” Jarrett said.
“It breaks my heart when people don't see that they can shine on stage.”
Performer Kate Kemp said “Inclusive is like my second family. They accept me for who I am as a person. I have lots of friends and I can be myself.”
“I've learned to be strong and be independent on my own,” Kemp said.
“Inclusive is like my second family,” said Inclusive performer, Kate Kemp.
Source: Canta / Rosie Leishman.
Emily Coull said, “It's one of my favourite, happiest places to go.”
“Jasper and Fiona are awesome and it’s an incredible team to be a part of.”
When asked what needs to be done to support this community, Sutcliffe responded immediately with “[f]unding, more funding”. More money to pay for assistance and support workers means more participants can attend.
“More things to do as well,” said Sutcliffe, “the best thing we can do for this community… something that pushes them and they enjoy.”
Trust Rugby International (TRI) Rugby enables people with disabilities and vulnerabilities to play rugby. Source: Canta / Elsie Williams.
Tri Rugby is another group in Ōtautahi enabling people with disabilities and vulnerabilities to play rugby. Originally coming out of Scotland, Trust Rugby International (TRI) Rugby is like your average game, except players wear different coloured head gear to determine the level of tackle.
Black is full tackle, yellow is gentle touch and takedown and red is just a touch.
There are also enablers on the field to support the players and the game flow. Participants are developing skills just like every other rugby player in Aotearoa. They just have that extra layer of support to ensure their comfort and safety.
Linda Healion is the Tri Rugby manager, and mother of team captain, Bradley.
“He's always loved rugby… But was never able to play because his ability to play regular rugby was out of the question. So, he joined the Tri Rugby team,” Healion said.
Having been involved in the disability community for nearly 40 years, Healion understands the disability sector and was asked to get involved with Tri Rugby to support the High School Old Boys rugby club manage the team.
The difference TRI makes for providing the disabled community with the opportunity to get involved is unmatched and has been earning much appreciation.
One player, Mark Lewis, has been playing for over a year.
“It’s made a huge difference to me,” Lewis said. “I’m much more confident playing… the coaches really push me to the limit.”
Healion described a player with cerebral palsy who wears yellow headgear. “His parents have said that his mobility has improved… He hardly drops the ball or falls over.” As a result, his wellbeing has escalated “tenfold,” she said.
Players are developing rugby skills just like every other rugby fan. Source: Canta / Elsie Williams.
Tri Rugby enables those with disabilities to be a part of a team and play a game that is a rite of passage for many Kiwis interested in sport.
“It’s that social connection of belonging to a rugby club and I think that's an important connection to have,” Healion said.
“We've got a player who wouldn't get his hands dirty and when he first started, he wouldn't go to the ground … now you wouldn't even know any difference. He's like any other player on the field.”
“It’s small steps, but when you look back at where they started and what they're doing now – it’s huge.”
Healion also explained that Tri Rugby encourages players to understand how life works for those around them.
“You have to respect your teammates and all of their differences. You have to respect the coaches and the enablers on the field… for some of them that's been quite a big learning curve.
“Disability is always the last off the ranks … I've worked in the disability sector for many years and especially for those with intellectual disabilities, people don't understand that people have differences.”
Healion believes including the disabled community in regular club activities adds value to everybody. “Often it’s not what we're giving them but what they're actually giving us and the lessons that we can learn from them,” she said.
Healion said the best way forward is to shed light on the diversity of disabilities to accommodate them while encouraging disabled individuals to pave their way.
Kahurangi Carter, the disability spokesperson for the Green Party, has her first-hand experience living with and raising a child with a disability.
She offers a personal perspective on navigating the system.
“Obviously people with disabilities have different needs. It’s about making sure that when decisions are being made about the disabled community, that we have not just consultation…[but] actual leadership,” Carter said.
This leadership can have positive impacts on the access standards for disabled people. Carter used buildings as an example of being far more user-friendly when someone disabled themselves consults or leads the development process.
Carter expressed the importance of ensuring the disabled community has a say in the policies that ultimately impact them, as lack of consultation has led to many funding cuts and changes to disability services.
“What has happened is that the community feels disrespected and disregarded. New Zealanders really care about disabled people, and actually agree that we want disabled people to be treated with dignity and respect,” she said.
MP Kahurangi Carter, the disability spokesperson for the Green Party. Source: Green Party NZ.
High numbers from a recent poll indicated that the New Zealand population wants to see a full reinstatement of disability funding and equipment.
“We just need to make sure that the government is doing more of what the people are wanting,” said Carter, when summing up the ideals for the future.
Prudence Walker, the Kaihautu Tika Hauātanga Disability Rights Commissioner who is disabled themselves, also has a deep understanding of the hardships and barriers faced by the disabled community. Walker’s role is to promote and protect the human rights and Te Tiriti rights of disabled people and Tāngata Whaikaha Māori.
Prudence Walker, Kaihautu Tika Hauātanga Disability Rights Commissioner. Source: Supplied.
Walker is adamant that to support the disabled community, it’s critical their voices are included at the centre of decision-making and planning.
“Disabled people and tāngata whaikaha Māori are practiced and creative problem solvers. In a disabling world, that is essential,” Walker said.
“The people who face barriers to having a good life are best placed to drive how those barriers can be reduced or removed,” said Walker. “There’s a lot of talk about celebrating diversity and inclusion… but that often doesn’t include disability.”
Inequalities that revolve around everyday determinants can relate to travel, work education, and medication access. What some might not consider to be crucial impacts, might be the difference between living a safe and supported life compared to living without access to basic amenities.
Carter explained, that at the moment, it is still legal to pay disabled people less than minimum wage. “It’s crazy,” she said.
“We’re talking about basic access to housing, transport and freedom of movement.”
Carter also highlights: “New Zealand’s dirty little secret is that having a disability is a pathway to prison, and poverty.”
This reveals how discrimination is a huge factor behind the high rates of unemployment, and why people’s perceptions and attitudes can be warped.
New ‘Let’s Get Accessible’ research revealed that the tertiary experiences for disabled individuals have been a strenuous experience.
“With just 7% of disabled people having post-graduate qualification (compared with 21% of non-disabled people in the general population), there [remains] great inequity in accessing tertiary education,” Walker said.
These factors contribute to the hardships faced by the disabled community.
Whether it be accessibility setbacks through the upcoming removal of $5 prescriptions, the ongoing lack of accessible accommodation, education or unemployment, there is much more work to be done.
With the work of groups such as Inclusive and TRI Rugby advocating for inclusivity, everyone must do what they can to show up for the disabled hapori.
This starts with making sure that we lead with manaaki; generosity, and hospitality.
“Making sure that spaces are accessible,” Carter said. “The more that we make sure the disabled community is viewed by all of us is important.”
Secondly, prioritising education, and calling out ableism is essential.
“Educate yourselves about disability rights and the Convention on the Rights of Persons with Disabilities (CRPD),” Walker said.
“Learn about the social model of disability in which societal barriers are acknowledged as disabling people.”
There is also urgency for the government to co-design services for disabled individuals and prioritise a people-focused and rights-based approach.
While the public should be thinking about their own assumptions and challenging any existing stigma, those in positions of power need to be doing more.
To lead with manaaki, means that everyone needs to be involved.