'Less pedestals more platforms' - Dundalk IT student Alannah challenges perspectives on disability

Interview

Donard McCabe

Reporter:

Donard McCabe

Email:

donard.mccabe@dundalkdemocrat.ie

'Less pedestals more platforms' - Dundalk IT student Alannah challenges perspectives on disability

Alannah Murray is a 21-year- old DkIT student from Cavan, who is in her final year of an undergraduate honours degree in TV and Film. She is an award-winning student filmmaker and blogger.

A documentary she directed in her second year in college, premiered at the Galway Film Fleadh and won Best Documentary at the Underground Film Festival in 2016. Her most recent production “Tempus” premiered in Portugal and has been nominated for Best Student Short at the Underground Film Festival.

She runs her own blog ”Wheelie Healthy”, where she discusses topics about living with chronic illness and self-care, as well as sharing healthy, chronic-illness friendly recipes.

As a young woman who suffers from a chronic-illness called Juvenile Dermatomyositis, Alannah is well placed to share a perspective on living with a disability.

Alannah gave a TEDx talk recently called “Less pedestals more platforms”, where she challenges society's views on disability and why people with disabilities need more platforms to effect change. She discusses this and more in an interview she gave to the Dundalk Democrat.

Why give a TEDx talk?

“I think in college studying film, a lot of our learning is visual, and through looking at TED talks and getting my information in that way, I found that it was such a massive platform that was such a visual platform.

“You see millions of people watch TED talks every day. The reason they are so successful is because people love them so much.

“ I was actually talking to a friend of mine on Twitter and I said, 'Oh its on my bucket list'. I was 20 at the time and I thought 'I'll do that at some stage in my life'.

“My friend tells me, 'Well this is after opening up – DKIT are running it so do you want to, there’s their contact details – sure apply'. So I thought 'Ah yeah grand, I’ll fling my name in and I’ll see what happens”. So they got back to me and they say, “look we’d love to have you.” So that’s how the TED journey started really.

What do you want the platform for?

I’d like a platform for people with disabilities. Being someone that has a disability myself, you see in modern society, a push for diversification.

You see a bigger push for representation and I’m actually doing my dissertation on the topic. Diversity, representation – the one group that seems to be constantly missed are the people with disabilities. And I have never been one to be quiet, my mother calls me the mouthpiece of the family.

I run a blog already, so I’ve started that platform myself but I wanted to go bigger. I wanted to go global, I wanted more. I wanted to not just speak to the hundreds of people that do read my blog already, I wanted a bigger impact to actually hopefully kickstart something.

People who aren’t disabled, who actually watch my talk and say, “Oh I never thought of that, maybe I should think about this, maybe I should think about that”. So maybe not even to start the conversation but to challenge the conversations that have happened before this.

What sort of things do you want to challenge?

Its challenging people to think about how simple their life is. Everyone is kind of going, “Oh God, I have this on, I have that on”, and then I get on stage and I tell them that people with disabilities have to book a bus 48 hours in advance if they want to travel.

And to do that you have to answer questions, “so where are you going, where are you leaving from, what time are you going, what time are you coming back, are you bringing someone with you?”

“Even when you do make that booking, there is a massive chance of it falling through and you’re stranded then on the side of the road. So people think, you know, 'Oh my life is incredibly complicated and difficult' and then I tell them that 70% of people with disabilities are unemployed and that there’s a massive amount of poverty within the disabled community because we can’t work.

“But it's not that we can’t work, as I said in my TED talk – the only barriers that are in front of me are the ones that other people put in front of me.

“I’m about to graduate college with a BA honours degree, I’m hoping to do a postgrad so then I’ll have graduated with a Masters but I can’t get any kind of job.

“I have applied to places and they’ve said, 'Oh our stockroom is upstairs', or 'you’re exactly what we’re looking for but unfortunately we’re working out of this premises…'.

“So it's not that I’m unable to work or unwilling to work, its that I’m not being given the same opportunities to work as others. So even something like getting a part-time summer job, something that we all experience, you know, getting up and getting older when you want a few quid and your parents tell you to go out and work for it then – it's not that simple.”

“Even getting to college there is – when I started college I’d to liaise with the Disability Services and I was lucky that they organised everything.

“ I live in Cavan so getting from Cavan to Dundalk with no reliable bus system, no reliable public transport. So many students rely on buses or trains but I can’t do that.

“If it wasn’t for the Disability Services in the college there’s no way I would have had the opportunity to actually go to third-level education."

How have you found being a student in DKIT?

“I couldn’t have asked for a better place to go to college. The Disability Services have been second to none. Anything I need, they’re there with bells on. So basically I work on my laptop because my hand cramps up and I can’t write so I was provided with a laptop.

“I work in film which by the way is not a very wheelchair accessible medium to begin with. But the college, the lecturers have done everything in their power and more to make sure that I still have the same student experience.

“They made the investment in the new equipment which would enable me to get over the obstacles of accessibility because basically the way that the TV studio is built, it was built where the gallery is up a set of stairs because people with disabilities were not considered in the designing of this brand new Carrolls building. It was an architectural revolution and yet we were still unthought of.

“Whereas I got in and said this needs to change, you’ve got to fix that and they said ok, we will. And they invested not only in my future but the future of disabled students that will come after me in the future.”

How do you get on with the other students in your year?

“A big thing when you go to college, I mean the education is one thing but the social engagement is another thing.

“When I first started college I was very shy, very quiet (which most people wouldn’t believe now but I promise you it’s true!). Everyone’s unwillingness to treat me any different – I was pretty much roasted the same as anyone else would be.

“There have been times when say social events at rag week or anything when my transport has fallen through and my friends have physically carried me onto coaches, carried me onto buses, carried me in and out of nightclubs(sober, not drunk! – but I have had to be carried out drunk a few times!).

“It’s the people that you surround yourself with that makes the experience and I couldn’t have asked for a better group of people to spend four years with.”

Back to the TED talk

“What TED originally stood for was technology, education and design but since then it has branched out to cover so many different topics.

“The one that I started with was an activist called Stella Young. She was basically talking about how disabled people are not there to be your inspiration in life and that was something that I wanted to touch on in my TED talk.

“I wanted to basically say that I was a twenty- year-old girl who is still very much terrified to make phone calls, who still gets …to make her appointments – there’s nothing over inspirational about the fact I swing my legs over the bed and go to college.

“When I was making my documentary, as I was promoting it I was very fortunate to travel with it and do the festival circuit and people were saying 'God, you must be so proud that you’ve done this', and I was really proud I had made a film I was passionate about, that I’d made something with a message but I wasn’t proud that I’d just went into college, and you know, on a base level, just went into college and did an assignment and handed it in because it was the exact same thing that everyone else was doing.”

Creating your own path?

“I’m creating my own path but I shouldn’t have to. I’m fluent in Irish, I am decently well spoken – I think so anyway. I have a basic level of German, I have an award-winning documentary and I have a TED talk. And I can’t get a job.”

Would this be the same for someone else in your class without a disability?

“I think they would be absolutely swarmed with offers. I think that people often look at disability as a disadvantage but really I consider it an advantage.

“It gives me something over people that not everyone has – I am completely unique in every single interview that I go into and I think that is a brilliant thing. I think that being the only person in interviews that is sat there in a wheelchair and I say that 'I have something to offer you' and the fact that that isn’t being taken, I have to assume that it is because there is some level of prejudice still in relation to disabilities.

“There is no other explanation. There is no way that someone with a CV like mine, with talents like mine, there is no way I shouldn’t have a job already.”

Would you put it down to people’s fears maybe?

“Definitely. I think Ireland as a society, we’re very much progressing, we’re still getting rid of the ideas we’ve held in the past and is going on with other political debates.

“On the subject of that, Ireland is the only country in the entire EU that hasn’t ratified the convention for the rights of people with disabilities. We signed it 11 years ago but it still hasn’t been ratified and we are the only ones that haven’t.

“There are countries that are still under development that have the UN Convention ratified. So while Ireland has never been the best with human rights, its people like me, its people like my colleagues, my peers that are challenging what people think a disability is and what people think disability means. I like to think that I’m more than people’s expectations of what I am.”

You have a Personal Assistant

“Michelle has been my PA for four years now and we’re best friends. We do everything together – she supported me through every single up and down that I’ve been through.

“ She learned the ropes as well – a lot of PA’s that could come in and be like okay, its 9 to 5 thing, I’m here to do whatever you need and then that’s it.

“But Michelle has stood in as an actor, she’s been camera person, she’s been transport, she’s been my PA, she’s recorded bits of my documentary, she drove me down when I made it to the Galway Film Fleadh, she was with me when we got nominated for best film last year, she was willing to come with me to Berlin when I was chosen to represent the college.

“We have been from literally one of the country together, to the other. We’ve been beside each other constantly for four years.

Would it be a benefit to you to have Michelle as a PA when you leave?

“It would but that’s a whole other thing of having to pay a PA privately and there is not a whole lot of options for direct provision like that. There are groups working on that at the moment – I’m not part of them anymore.

“But there are many activists that do want direct provision, that do want to be able to live independently rather than – with disability and activism we focus on the social model of disability versus the medical model.

“The medical model is what we have now, of basically carers and in-home care, whereas it should just be support and independent living assistance, rather than as if we’re patients or as if we’re invalids.

“We’re people, we want the same rights as anyone else. I’m 21, I should be preparing to leave my family home – as much as I enjoy my mother doing all my washing for me, I need to fly the coop at some stage and I’m finding it so hard to get on a housing list, because there ar so many forms.

“There’s so many meters of red tape that I need to go through and then that’s without even thinking of employment. Going back to that again – I can’t support myself if I can’t get a job. “

On people with disability having more costs

“There’s the cost of disability – there’s medication, there’s services you need to go to. Transport is free but you need taxi’s, transport isn’t even reliable. Wheelchair taxis – I think only a marginal percentage of them are wheelchair accessible – I think its 10-15% of the entire country’s fleet is wheelchair accessible and most of them are concentrated in Dublin.”

It’s not just disability rights you’re championing?

“I’m currently working with an advisory group, me and a few others set up the group because we felt disability wasn’t being accurately represented.

“Within the [campaign to retain the] eighth amendment, basically we’re being used as some kind of bargaining chip, you know the “if you bring in abortion you’re going to kill disabled kids…” and so on.

“I acquired my disability – I wasn’t born with it, I developed it. Its juvenile dermatomyositis – it is akin to Lupus. Its incredibly rare, there are 50 or so in the country with it – there were five when I was diagnosed, with me being the most severe.

“I’ve had three near-death experiences and I was told I’d be dead by 20. I sit here at 21, with a TED talk under my belt, about to graduate third level education with a reasonably healthy GPA.”

And you don’t think that’s inspirational?

“That’s just me, that’s just my life. People ask me 'how do you do it' and I say, 'would you ask anyone else how they get out of their bed in the morning?'.It doesn’t make sense to me that my life is any different because this is just my set of circumstances.

“It’s a life that definitely I adapted to. I went from being a very active child that would run around, that would walk for miles to being dependent on others. And that never sat right with me, I was always very independent as a child so I like to carry that and kind of give my voice to those ….of others that can’t speak for themselves…the ones that are still…the quiet version of me before I realised that I was going to be left behind by society if I didn’t speak up.

“When I was younger because I was so rare like this trophy, medical students would be coming in and doctors would be coming in, and I’d be, 'yeah, just let them in'.

“I’ve spoken to full lecture halls on my condition. I’ve been lying in bed and I could have 15 medical students around me and basically poking at me and prodding at me asking, 'does that hurt…does that hurt?'

“I had a very strange experience of childhood was, because my childhood was appointments and making sure to take medication on time, and realising that I was incredibly fragile, that I couldn’t afford to go out and play with the kids because if I got a chest infection – if I got any kind of infection, I was done for.

“I thought that my parents were incredibly protective, nearly overly protective and I suppose a lot of the time I was like, 'Oh God, this is ridiculous, let me go out.' And then I snuck out one lunch and I got hit by a ball and knocked off balance, fell and broke my leg. I realised then, 'Ok I get it now'.

“ It was one simple fall, any child falls - every child falls, but the stakes are higher. The stakes are higher when you have a child with a disability but I think its important that while I knew that, I wasn't treated any differently either.

“I was treated with a kind of doctored approach to what was normal and we ran with that. They were like 'stay in and read, its freezing outside', and I went, 'oh yeah, you're right'.

“Everyone has to go out and here I was able to stay in in the warmth and read – I was happy with that – it was their way of normalising everything.

“I went to an all Irish primary school and all Irish secondary school, so being fluent in Irish is another thing that I bring from school, along with my approach to living with a disability. All these things, all these experiences – people say 'Oh God, you're an inspiration', but its little stories like them – it's just my life.”

When it comes down to it, Alannah believes that “the notion that people with disabilities are different and this sort of 'othering' that society seems to love to do, you know, the conscious exclusion and the push for diversity, the push for inclusion – if your activism is not intersectional it means nothing.

“Make sure that in every debate that you have, you include every single member of society because otherwise, you're speaking from a very privileged position. We've had too much of that and its time for it to go. It's time for it to end.”