A CHAT WITH... ALICE MANDER

At just 1, Alice ander is fast becoming a prominent voice for change. he was 1 when she was diagnosed with imb irdle uscular ystrophy, which causes her muscles to weaken and waste over time. And now, in her fourth year of law and arts at Wellington’s Victoria University, she has been nominated as a finalist in the Impact Award category at this year’s Attitude Awards, which celebrate the achievements of iwis in the disability sector. ander founded the ational isabled tudents’ Association A , of which she is president, earlier this year, to represent and advocate for students around Aotearoa, communicating on their behalf with government, disabled persons’ organisations and tertiary institutions, to ensure a more inclusive and accessible learning environment.

Bridget Jones spoke to her to find out what makes her tick.

What sparked the movement behind the NDSA?

All the students involved are disabled themselves, and we’d all faced so many barriers, but it felt like it was just our own, personal issue. Talking to other people, it was clear these issues are being faced by so many students across campuses. or me personally, in with the first Covid lockdown, a lot of tertiary providers weren’t prepared for the online learning switch, and there was a lot of labour that disabled students were putting in to make sure our voices were heard, and that online learning was done equitably. That got some students at Victoria University thinking. ome universities don’t have disabled student groups, how are their voices being elevated And what is the government doing to ensure disabled students have our needs met ecause so many of those needs in the tertiary space aren’t being met campuses are still inaccessible, some lecturers still aren’t disability aware. It made us realise that if no one else is going to think about this, then we need to start getting that national voice out there.

Are you frustrated it’s fallen to you and your team to try to fix the situation? It’s

very frustrating. That was one thing that frustrated a lot of students during the first lockdown, that as disabled students, we’d been asking for online learning or even more flexibility around how and when we learn since the technology was available, and we were told it wasn’t possible, or it would be not academically authentic

there were a range of excuses. And then when it affected everyone, the switch online was instantaneous. The onus is definitely on individual disabled students to fight against their providers to get their needs met. It’s so difficult when you are already studying full time, or trying to work as well, and on top of that, you’re trying to fight to get your rights met. We hear that from students a lot, that they are so tired from the self advocacy that’s required. And that’s where we are trying to step in, so those students can just be a student, and study and work hard and not have that extra thing to do.

How many students are impacted by the things you are fighting for?

The data on disabled people generally is so poor, let alone disabled students we are an invisible group. Every institution quantifies it very differently, but we operate off the assumption that, just like the general population, it’s one in four students. We also operate under a really broad definition of disability, which includes mental health and chronic illness, so we think it’s even greater than that number that the education system is failing. It’s hard to quantify, and it’s hard to advocate when you don’t have the numbers.

What sort of reception have you had from those in power?

There is definitely a move to want to put the learner at the centre, and a move to seeing the worth of student’s voices, and ensuring they have a say, or co design what their institution is doing. Attitudes are changing, which is good. It’s just whether those attitudes translate into action.

You’ve spoken about the invisibility of your muscular dystrophy. Can you explain what you mean?

It’s progressive, which means it deteriorates or progresses, so in terms of my identity, it’s been really interesting. When I was younger, it was invisible, and it’s getting more visible now. There’s a constant need to re evaluate how I see myself, which has been really tough at times. A lot of what we see of disability is either quite a stable condition from birth, or an accident. That progressive notion, and how that impacts on your sense of identity and the struggles that can come along with that, is less talked about. I’m not sure how it will affect me in the future, but I’ve come to a space where I’m proud of being a disabled person, whatever way that looks.

When did you realise you could help other people and make a change?

rowing up with a disability, and coming into that identity, was tough because I didn’t have anyone to look up to in my immediate circle. They were obviously out there, because it is a large population group, but we have been so invisible in the media, in government spaces and in the private sector. ecause I have such a privileged background, and such ama ing educational opportunities, I want to ensure disabled young people don’t have that experience, and that they can see people speaking up proudly about these things, saying, yeah I am disabled, and it’s society and the system’s job to ensure my needs are met. That is the role of community. When I was about 18, I realised it wasn’t my problem that I couldn’t access a lecture theatre and that realisation is so empowering as a young person, realising that it’s not something inherently wrong with you, it’s something inherently wrong with the system. I want to bring that realisation to the forefront for a much broader group.

How will you know when your job is done?

I don’t think it will ever really be done. ut when disabled students are in the conversation, always, and only by centering disabled students are we going to achieve equity. The ultimate aim is an education system where there are no barriers to success other than doing your absolute best. ou should be able to achieve and have the support to achieve so everyone is on an even playing field from the very beginning.

The ultimate aim is an education system where there are no barriers to success other than doing your absolute best. You should be able to achieve – and have the support to achieve. . .

How far away is that goal?

We’ve had some really great wins in the past few years, thanks to ama ing student leaders before us. or example, this year a new pastoral care code was developed, which means all tertiary providers have an obligation to ensure their students’ wellbeing physical, emotional, cultural safety

is all met, and that’s huge. ut it’s not just about what happens in that tertiary institution. It’s a really holistic approach and it includes the things happening at home, in flats, the financial situation, mental health a lot of things. ut we can get there.

watch The Attitude Awards will be held virtually on December 10, and screen at 4pm on TVNZ 1, December 18.