Maryanne Diamond AO GAICD has worked in some of the country’s leading disability advocacy organisations and is now the General Manager of Stakeholder Engagement at the National Disability Insurance Agency. When with the World Blind Union, Maryanne was instrumental in Australia advocating for what became the Marrakesh Treaty. We chatted with Maryanne to hear her reflections on that process, to hear her experience with reading and also her motivation to continue promoting the accessibility of books for all.
Looking back on the journey to get to the point we’re at now globally, what was the most positive and difficult aspect of affecting this change?
We have made progress in getting books in accessible formats to people who have a print disability around the world, but the challenge, especially for someone like me who likes to see quick results, was that it was a long, slow journey. And at times it seemed like we weren’t going to find a solution!
One priority of the World Blind Union (WBU) was to get books in accessible format produced and available to people who are blind or have a print disability at the same time they are available to everyone in the community. We spent many years raising this issue with publishers and with the World Intellectual Property Organisation (WIPO) in their copyright committee. In discussions with world experts on copyright we came to the decision we should try our hand at a treaty. Brazil was the champion state for this and were the leaders within WIPO.
Treaties are ultimately negotiated by governments, so our role as civil society was to work with governments – including Australia – and inform them, support them and lobby them. It took five years and was a slow process and at times it looked like the governments would stop negotiating.
At one stage we had three different versions of the treaty on the table, one by the European Union, one by the African region and the one led by Brazil. Some governments were sympathetic to the cause but didn’t want a treaty.
Over the five years, however, we progressed and in Marrakesh in 2014 the treaty was adopted and in 2016 it came into force.
Along the way, one of our biggest concerns was that we would get a treaty, but it would have no substance. It was a fear many in the print disability community had at the time. We stayed firm and clear on what was not negotiable in Marrakesh; resulting in a good treaty we were confident would work for the blind and print disability community. Despite it taking a while to be ratified by the required 20 countries, in order for it to come into effect.
Countries with a very large selection of books like the European Union members and the USA have now ratified the treaty, along with a number of developing countries, so there is now a mechanism to exchange books between those countries. The treaty’s outcome is in action – where there are a large selection of books and where there are fewer books.
It was worth the battle. Many times along the way people close to me said I should just give up saying, “Count your blessings and be pleased you’ve tried.” But we stood firm. It was definitely a lesson in international politics and how things work, and also, resilience!
The Accessible Book Consortium established by WIPO was instrumental in setting up a platform for countries to communicate with one another leading up to ratification.
To what extent was the treaty’s development effective in action from publishers?
Prior to the beginning of the negotiations we saw a lot of wanting to sit around and talk and didn’t see much happen as a result of the conversations.
We took the treaty to WIPO and the publishing world as a human rights matter – as the right to read and to information – and at the same time we recognised the rights of content holders and of publishers and authors.
I think the treaty found the balance of those two groups and that contributed to the amount of time it took to get the treaty, as it took time for both sides to gain an understanding and it has made a huge difference. There is still a way to go for capability and capacity across the world for the production of inclusive publishing but it was an interesting and fruitful journey and we are in a much better position than ever before.
What do you see was Australia’s role and influence on the treaty?
Australia initially followed the lead of the United States. The USA were of the view that we should not have a treaty, but have voluntary guidelines. We at the WBU did not have the same view. Our belief was that voluntary guidelines would not change the world at all.
Over time things changed and Australia came on board with advocating for the treaty. A lot of people started talking to people in government. There was a change of Australian policy staff in Geneva, which helped the cause. An Australian who went there to work, about 18 months before the treaty was determined, was an excellent negotiator. He was in a lot of the working groups and helped make positive shifts. A senior official from the Attorney General Department came to WIPO meetings and to the diplomatic conference in Marrakesh which added strength to Australia’s support.
To change tact a bit now, what are you memories of reading as a child?
As a child I didn’t read much. I enjoyed being read to. My sister who is four years younger than me read to me when I was at home from boarding school. We had some braille books at my school but not a lot and certainly not the books that everyone was reading at the same time. Braille books were a long way behind. I do remember I had a bit of an attitude when I was thinking about what I would study at university. I thought, oh well, I’m going to study mathematics because you don’t have to read books, you just have to solve problems! I thought that would be easier for me.
There was a barrier there for me to read and it made me make decisions based on that. My brothers and sisters were reading current books but I didn’t have access to that material at all so I was unable to join conversations about what they were enjoying.
What was your experience learning braille?
I went to a school for the blind from the age of four years. Not for my whole schooling though – later I went to a regular school. I learnt braille from a young age and for that I am fortunate. I am now a good braille user but it doesn’t matter how good you are at reading braille, you’ve got to have the material to read. Although I thought at the time we had a lot of braille books at our school, effectively they were large volumes of braille that made up a small book. It was just how it was. Given this situation, Reading wasn’t on the top of my mind any way.
Given I enjoy reading so much now, and there is more available, I think I would have enjoyed reading more back then if there was more on offer. But at the time I thought I’d just stick to mathematics and other activities where accessing information independently was not necessary.
I did mathematics and computer science at university, working in the computer science industry for a number of years before I started in the disability sector. I mainly made the change because I have a son who has low vision and I became involved in advocacy including the rights of parents. As a person who has a disability, I would think of myself as a good advocate for myself. I managed to find myself a job and I found ways around things I needed to do in many cases reliant on peers, family and friends. As a parent I started to view advocacy in a very different way. I was aware that as a person who has been blind all of my life and struggling to navigate the disability services system, how difficult it must be for other parents who had never encountered disability.
At university, was gaining access to learning materials and resources easy?
It was very difficult to get access to materials in the format that was needed. If I was to ask a specialist volunteer organisation to get my book converted to a format that was required, I’d be lucky if I got it back before the exam at the end of the year. The system wasn’t going to work for me so I tended to create my own mechanisms.
This would work for me for mathematics. I would have a small network of classmates or peers who would read the textbooks to me. You couldn’t just record the lecture like a psychology class, as a lot of the things the teacher was doing at the board was not said. I was choosey about who I got notes from – they had to be someone who took enough good notes. They would read their lecture notes to me and I would put them into braille. It was a bit of double handling but it worked quite well for me.
I also asked for my examinations to be done in braille. It got me through but really only because I took control of my own needs. There’s a lot more support around universities now, there were some when I studied but not much. I usually sat my exams in a separate room and was allowed more time. In the case of mathematics, I would do the exam in braille and then I had to dictate my answers to be written down in the exam book which you can imagine took a lot of time.
What do you read now and how?
My main reading was access via braille books. I did get braille books from the library but there wasn’t much around or necessarily what I liked. The case is now that there’s a lot more audiobooks and I pay a subscription to Audible.com as my main source of books. With the treaty in force it opens up a huge range of books around the world.
Devices have improved. Instead of having to carry a cassette recorder and a lot of cassette tapes, devices are small and portable. Some are more accessible than others. I choose to use my IPhone for reading books.
How have you seen workplace attitudes change to people with a print disability?
Some things in the workplace have greatly changed and others not so much. There have been changes in the information technology field – we can have synthesised speech going on in the background on our computers or devices, a braille display you can attach to your computer or a digitised braille notebook. They’ve made a huge difference to my life and productivity.
Attitudes about people with disabilities in the workplace vary greatly. If a manager or team members have had a positive experience with a person with a disability – they really are more likely to employ a person with a disability the and are usually the best people to work with. They accept you for what you are. Some people are hesitant, reluctant or not sure about your disability. But the challenge for people who are blind is, as technology improves, we have to make sure we are not missing out.
I’m talking here about graphics. The device we use is Text to Speech, in Audible or put into braille. Many things now use graphics. I find now that in my career I have to continue to advocate for people to think about graphics and create documents that are accessible. And more so, to move away from the idea that, “We will make our document, and then we will make it accessible.” It’s not the same and it’s so much easier to do it at the same time. It’s a current ongoing challenge.
One of the challenges around the world I’ve observed, and even in Australia, is that for people with print disabilities there’s a higher level of unemployment. A lot of the devices are only available to people who have access to resources to purchase required devices. Some countries have a way for you to purchase these devices, but not all. Often you’ve got to have a job to get access to these technologies and programs, and sometimes you’ve got to have the required devices to prove you can do the job.
In Australia can the NDIS help with tools and technologies that assist people to read?
There is some assistance if you meet the illegibility criteria. If you are Australian, under 65 when you acquire a disability , and have a significant disability (of which blindness is considered to be). Depending on the goals an individual sets for themselves assistive technology may be considered a reasonable and necessary support to assist in achieving the goals. Not everyone who is blind wants the same things and wants the same supports. We’re not a homogenous group. Funding for assistive technology could also be covered under other programs such as Job Access.
What would it mean to you and your colleagues if we reach our goal of making books accessible?
For me, that is the desired outcome. The Right to Read campaign, the initiative of the World Blind Union which the Marrakesh Treaty led from, had the goal that every book is made available in a format that everyone can read at the same time of being published in print.
That’s still what I would like to see achieved.
If books were made accessible and inclusive, I could go into a book store and buy a book. I can’t do that now at all. It is a market failure. If you think of all the people who are blind or have a print disability it is millions of people around the world. There’s an income stream for the publisher and the author if books were produced in formats everyone can read.
What we rely on is charitable organisations, who have limited dollars and resources who have to make decisions about priorities about what they do and don’t do for the people they serve. They are doing the conversions and it can take a long time and costs a lot of money. It is much cheaper to produce accessible books from the beginning than to make them after they’re published. I’d just love to go into a shop and buy a book like my husband and children do!
Is there anything you’d specifically like to say to publishers?
What I say to publishers is that everyone in the community wants and should be able to read what you’re publishing. You need to really think about inclusiveness and the whole of the community, not as an afterthought. It’s over to you. There’s a market here for you. There’s money to be made.