Transcript
[0:00] Viv
We would like to acknowledge the traditional owners of the lands on which we record this podcast: the Gadigal people. This is their land never ceded always sacred and pay our respects to the elders past present and emerging of this place.
[0:17] Viv
Coming up on remarkable inside…
[0:20] Minnie
I was called back into the principal’s office and she genuinely looked devastated and she said look, the organisation said you can’t do this now because you’re disabled you’re blind. and that was the first time I realised the world might see me differently.
[0:35] Viv
Surprise! We had so much fun talking with Minnie that we couldn’t continue to one episode so here is a spontaneous part 2. In this episode we Speak about how Minnie accidentally became the first person in the world to have an eBook and her experience growing up with disability.
So firstly Minnie I understand you received your diagnosis at quite young and soon after you met a doctor who changed your life by introducing you to new technology?
[1:02] Minnie
No, you’re so right. Absolutely. I was so lucky that when I was given my diagnosis, I was sent to the hospital. So I grew up in a town called Palmerston North in New Zealand. The ophthalmologist who diagnosed me then sent me off to a specialist at the hospital Leslie Bolton. I still remember this so vividly, walking into this beautiful room, cause hospitals on the whole aren’t. Known for their beauty, but I think it was because I remember there was sunlight coming in and she had this sunny personality and she was all about what I probably now call possibility thinking. She was only focused on what was possible. She was always looking for different ways at different solutions, different technology that could support her patients, and in this case me as a 15 year old and This was in about 1985, and so it was really pre-computers in a way. There were probably a few emerging, but she had the most extraordinary array of magnification equipment and some of the most extraordinary technology. For me to try out, particularly in the classroom, because the big issue for me was as my site deteriorated, by this stage I was virtually unable to read books and I certainly couldn’t see anything on the blackboard, and I couldn’t see using overhead projectors, which are a thing of the past now. And so you can imagine that made accessing schooling really difficult. I was a very keen student. I loved learning, but. I felt sort of these barriers were coming into play, and so we tried all this equipment, which she had sent me back to school with magnifiers and like little telescoped kind of things to look at the blackboard with, and this piece of technology that was like a handheld device that I could run across my books. Because it was just like this red light and it was a single line of text, but you had to keep your hand really still because you were actually literally running this camera over the page one word, one line at a time drove me absolutely bonkers, insane. Because it was so slow and cumbersome. But nonetheless, these were all the precursors to the technology that we now have available. So some of it worked, some of it didn’t. Look, it’s fair to say none of it could bridge the gap of my site loss. So everything took me maybe incrementally closer. But none of it unfortunately was like that, and here’s the thing that will really put you on a level playing field. But as I said, it was a process of elimination. It was also at a time where technology was evolving quite rapidly. Certainly today, if I was a 15 year old getting this diagnosis and heading into the classroom. The kind of tools that are available are just, oh, they’re in a different league. There’s no comparison. When I was studying, I went to university quite young, and one of the ways we got around the fact that I chose to do English literature, goodness knows what I was thinking. There is so much reading in English literature, but my darling mother would read. As many books as she could. She brought us up pretty much on her own at that point and was working full-time. So it wasn’t easy for her. But she would sit in her bed and read the novels I had to read onto an audio cassette and post them to me at university, which was extraordinary. My earliest audio books were my mother reading to me and there were these funny moments. We should spill tea or something and she’d go, “oh, bugger. I’ve just spilled the tea!” or something in the middle of the book.
[4:50] Viv
That’s such a good example of how your mum would record her voice and essentially give you the first prototype of an audiobook.
[4:50] Minnie
Yes.
[4:51] Viv
Was that something that you told your classmates or your teachers that you were doing?
[4:45] Minnie
Oh my God, no. Isn’t that funny? I don’t think it would’ve occurred to me. Isn’t that interesting? I think it’s possible. I didn’t tell anyone. Probably my flatmates would’ve known… no. And I think a lot of that was I felt that I had to nut a lot of this stuff out on my own. It was tricky. It was very tricky. And I think part of the way I probably responded, and probably to some extent still do, although hopefully I’ve learned a few other strategies to ask for help now, is to go inward and think, now how can I do this? What do I need to do to get through? So I think what I’m, I feel lucky that I seem to have a disposition that is focused on. There’s gotta be a way, there’s always gotta be a solution, there’s gotta be, I’ve just gotta look at this differently. And I have always had the ability to think laterally, I guess in terms of a situation. Sometimes I think I’ve had to wait until I was nearly at the breaking point to discover what that was. But that sort of desire inside of me to persevere, to keep on trying and trying must have been instilled in me somewhere really early on in my life.
[6:16] Viv
And is that a narrative that you experienced a lot? When you had your diagnosis?
[6:22] Minnie
So yes I did. And I noticed that the world quickly fell into two categories. There were the people who. Couldn’t seem to imagine for one moment what I could now do or what they perceived I couldn’t do. And I really stressed that cuz I think that was more about their limitations and their worldview than mine. But the problem is if they are people in power, if they’re our teachers or employers or whomever, That limited worldview can be incredibly destructive. The other side of it is the my doctor Leslie Bolton worldview, which is the possibility, let’s, it’s just a matter of looking at this differently and using some imagination and being creative. And so I talk about the people who have a possibility, worldview and the people who don’t, or I talk about the people who are with you as an access citizen and the people who are not with you. The first time that really happened was when I was selected to represent the school on this amazing boat adventure that high school students would be selected for, and there was often only one student per school. And you’d go away with a group of other students for a week and sail all around in New Zealand. And I’d been selected, which was just extraordinary. And then about a week later, I was called back into the principal’s office and she genuinely looked devastated. And she said, ‘look, the organisation says you can’t do this now because you are disabled, you’re blind’. And that was the first time I realised that the world might see me differently and in that moment, limit my opportunities. And so that was gutting. I just, yeah, I’ve never forgotten that moment and thinking, how am I gonna navigate this if other people are so unimaginative?
[8:14] Viv
I know language is super critical. And just for people listening, you like to use the term ‘access community.’ I would love to unpack what that term means for people listening. And you think if people with disabilities or impairments were given the right , access that they wouldn’t experience disability in many ways.
[8:30] Minnie
That’s it. Probably the first thing I’d say is I think language is so powerful. Every social change movement comes with a shift in language. Language is how we make sense of the world around us, and we communicate ideas and how we create shared frameworks for understanding and meaning creation.It’s vital. So when we set ‘Be Accessible’ up, back in the day, everything in the world was around disability. It was ‘disability’, this ‘disability’ that. Absolutely fine. And I understand the social model and I’ve researched and studied the medical model, so I really get all of this and I also respect, if that’s the language people choose to use.
‘Be.Accessible’, we didn’t call ourselves ‘Be Disabled or ‘Be Disability.’ We called ourselves ‘Be Accessible’ ; it was a call to action. We want the world to be accessible. So we felt as a social change movement, it was vital that we had language that mirrored our intent, and I wanted us to work in a worldview that we were calling an ‘accessibility worldview’, and that was a worldview that believes that equality is possible. It’s a worldview that actually sees all of us at some time in our lives will have a disability, or what I would call an access need. If we live long enough every single one of us on this planet is likely to have some kind of impairment through ageing. I also wanted language that was inclusive of everyone because the challenge I see with disability is that we often use it to denote a particular group over there. And I think it runs the risk of keeping us very binary, us and them, disabled, non-disabled. So accessibility was an endeavour to create a more spacious environment that can hold all of us. And I also noticed that one of the largest communities who have disability is the ageing population. Baby boomers, I haven’t yet met a baby boomer who has happy to call themselves disabled. They’ll say, ‘oh dear, I can’t hear very well, (this is my mum) or I can’t walk, or whatever. But I’m not disabled, I’m just getting older’. And I thought, okay, so we need some language that invites them in. So this was an invitation to smooth off some of those edges. By making it a universal experience. That was also a critical part of our argument that by creating accessible businesses, schools, education, workplaces, customer experiences, we are actually creating a better world for all of us.
[11:09] Viv
Minnie, thank you so much. You have been absolutely brilliant.
[11:15] Minnie
Thanks, Viv!
[11:16] Viv
Thank you for coming.
[11:17] Minnie
It’s a pleasure.
