Category Archives: Inclusion

The right to read and The Marrakesh Treaty

Disability Issues Minister Nicky Wagner and Commerce and Consumer Affairs Minister Jacqui Dean have announced New Zealand will ratify the Marrakesh Treaty to improve access to print materials for blind and visually impaired New Zealanders.

Literacy, and easy and universal access to printed material is something taken for granted and expected in developed countries. Yet even in developed countries such as New Zealand less than ten percent of print material is available to blind and vision impaired and other print-disabled people. In developing countries it can be a little as one percent. Millions of people worldwide, including older people, working people, children and university students are denied access to books and other printed material. This is the international book famine.

Blind and print-disabled people should be able to go to a bookshop or library to borrow and read the new bestseller novel or the latest celebrity memoir like everyone else. Blind and partially sighted people of working age need to access a wide variety of print materials, including books relating to the profession or job. Children and young people want to be able to go to school and university and develop high standards of literacy as much as their sighted peers do. But life choices and opportunities are limited by a lack or low level of literacy as a result of inaccessible books. Sometimes it is about teaching and opportunity, but more often it is about access to the same range of books as their sighted peers.

Access used to be much more difficult because blind and vision impaired people needed expensive specialised technology provided by specialist organisations to access reading material, books and magazines. Now accessible content can be read on accessible “out of the box” technology such as iPhones and iPads, although specialist technology which is slightly more affordable than it used to be is still available and widely used.

In New Zealand those who will benefit from the Marrakesh Treaty are the 12,000 members of the Blind Foundation. But Statistics New Zealand finds there are a further 168,000 (4%) of people with vision impairments. Their ability to read, even with correction, is affected too. They also need books in alternative formats. There are others who, for a variety of reasons cannot access print, for example, they are unable to hold a book.

The publishing industry and public libraries have traditionally taken little account of accessibility of print material until quite recently, seeing access for print-disabled people as a specialist and charitable endeavour. This has been partly because of technical limitations and the cost of equipment and production. Now readily available and cheaper accessible means of producing and distributing books accessibly, such as mainstream audiobooks and the ePub format for print has advanced to the point where the demand for access cannot be so easily ignored. Copyright remained a thorny issue for the various interests involved.

The Right to Read is an international campaign, and the advent of the provisions for access in the United Nations Convention of the Rights of Persons With Disabilities, (UNCRPD) has given focus and urgency to the issue. In New Zealand and similar countries there are still delays in accessing important education materials such as textbooks. Many specialist, literary and more popular general book titles are not available in accessible formats at all.

The World Blind Union and others have worked hard to combat the book famine. The result is the Marrakesh Treaty, developed by the World Intellectual Property Organization (WIPO), which directly addresses the problems of copyright access. The treaty enables “authorised entities,” such as blind people’s organisations, service providers and libraries to more easily reproduce printed works into accessible formats (braille, DAISY, (Digital Accessible Information SYstem) for the production of talking books, large-print and e-books, for non-profit distribution. It will also allow authorised entities to share accessible books and other printed materials across borders with other authorised entities.

The Treaty, which came into force in 2016, will help avoid expensive and unnecessarily duplicated reproduction of the same books in different countries. It also means that countries with large collections of accessible books can share them with blind and print-disabled people in countries with fewer resources. This will help print-disabled people in developing countries, and save much-needed resources in all.

Cross-border sharing is essential for combating the international book famine, as blind and partially sighted people are among the poorest in most countries, and organisations for and of blind people often don’t have the considerable resources still needed to produce enough materials in accessible formats.

The Treaty came into force with the required twenty ratifications last year. Progress towards ratification here is slow, despite efforts by the Blind Foundation and Blind Citizens NZ. Similar countries to New Zealand which have ratified include Australia, Singapore, South Korea and Canada, The UK, EU and the US, sources of significant amounts of print material in alternative formats, are still to ratify. There is support from publishers, authors and copyright bodies in New Zealand, but ratification requires changes to the Copyright Act. With the dissolution of Parliament in August completing ratification is impossible before the parliamentary election on September 23rd.

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Digital for life

Like most problems disabled people have to face, the problem of digital inclusion, or exclusion, is complex. Those who have a stake in the remedy/ies often don’t grasp the full extent of the complexity. We are left with the problem being addressed in fragments, with little connection between the fragments, and little involvement from the people whose stakes are highest, the disabled technology users. Defining digital inclusion narrowly so it is “doable” may result in inadequate and untenable solutions. Those of us who have worked in this area for many years feel as if we are running on the spot making limited progress.

Last week I attended a meeting about digital inclusion. I experienced some of the above. This is not about criticising people who, like disabled people, have been struggling to gain traction on a wicked problem. But one size of solution won’t fit all, and the problems are compounded by intersectionalities among the groups most digitally excluded.

The barriers to digital inclusion for disabled people are:

Cost – This goes well beyond the cost of the Internet connection. While the cost of assistive tech is nothing like the enormous cost it used to be, it still costs money, even the accessible out-of-the-box tech, like iPhones and iPads. Everything costs something and many disabled people and their families are among the poorest in New Zealand. There is also a constant need to update and upgrade. People are expected to be more responsible for their own personal technology in education and work, never mind everyday life. Technology is an added cost to an already high cost of living with disability. For example, a person may be able to use a regular smart phone, but may need a top-of-the-line model to meet their particular access needs

Access – following on from financial cost is the policy assumption that access to the digital world relates solely to education and work – an outdated view that does not take into account how connected our world is, and how socially isolated many disabled people are. Digital inclusion relates to nearly every facet of 21st century life. Exclusion can create problems as fundamental as establishing identity in formal settings such as banks and government departments.

What’s the best assistive tech for me? – Older disabled people may not have used much digital technology. Families with young disabled children are still struggling to get to grips with their changed lives. Many disabled people are poorly educated and may have limited access to information about technology choices. As in many other areas of disabled people’s lives useful information is hard to find, particularly if your service provider is not focused on digital access, and there are many disabled people with more than one impairment, while others receive little or no disability support service

How do I get the best out of the technology? – Skilled help with assistive technology is hard to find if you are not part of an impairment group with access to specific help. People don’t always know how or who to ask for help.

Do I have the right skills? – Some groups of disabled people may miss out on acquiring good skills using regular technology such as web and other applications, Word, Excel etc. Their education may have been poor, and as adults they have had no access to training using assistive technology in conjunction with regular software and applications.

Compatibility – A person may have the appropriate assistive technology, but connection with the technology in education or workplace settings can pose problems of compatibility. There may be a reluctance to modify either on the part of the employer, or even the IT service provider. I have had personal experience of the latter in a very senior role, and have talked to many other disabled people who have faced similar difficulties, preventing them from doing their job properly, limiting their opportunities and career prospects.

Mainstream research excludes us – Disabled people are often excluded from research projects, either because of an inaccessible methodology and process, or because the researchers don’t know how to contact them or communicate with them.  They may be seen as a “different” or “atypical” group, or just too hard. But at 24% of the population they are far from insignificant, even though they are diverse.

Little consultation – Disabled people of all ages need to be closely involved in deciding what technology will work for them, and how to use it. They also need to be included in consulting on and setting “big picture” policy and other decisions made about assistive technology. Involving a few “geeks” and disabled specialists is not enough. While I have seen meetings and forums about transport, employment, equal education, I have never seen an open access digital forum specifically for disabled people.

Technologists, policy-makers and researchers don’t know enough and don’t share or co-ordinate their work – It’s not enough to know about the technologies and their applications. Digital inclusion, and the knowledge to create it requires a more holistic approach, and knowledge sharing. The disability world is complex and intersects with other disadvantaged groups, for example, disabled Maori, disabled parents.

The battle for online accessibility, where the technology can be more important than the end-user experience, is a case in point. While this is possibly true for all user experience, for disabled people it is more critical as there is less choice for information access. The technology should never come before the people.

This is a human rights issue, and the underpinnings for this are little understood by those working in the field. Articles 9 and 21 of the UN Convention on the rights of disabled people are particularly relevant. Accessibility is Outcome 5 of the revised Disability Strategy and has a focus on Universal Design. What this means in practice requires thorough exploration alongside disabled people.

Digital inclusion is now huge. We are expected every day to interact and transact online with banks, insurance, businesses and retailers of all kinds, a variety of government departments, local government, health service providers, travel and entertainment bookings, education and work. There are eftpos terminals, ATMs, self-check-in kiosks, news, entertainment of various kinds and social media to navigate, and the technologies all change and update frequently. New opportunities arise in areas such as the arts. This is all likely to increase. Disabled people will continue to be seriously disadvantaged in many areas of life if digital inclusion is not tackled seriously.

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Disability Pride Week 2 Claiming our place

Disability Pride Week launched at Te Papa in Wellington on Sunday November 27th. As part of the ceremony created and led by accessible celebrant Wendi Wicks, a declaration she wrote was shared. While the ceremony acknowledged and celebrated the inclusive space of the Te Marae at Te Papa, it symbolised a wider claim to place. The declaration deserves to be shared with a wider audience, and other disabled people who want to claim our place.

A Declaration for Disabled People Claiming our Place

Today we disabled people here in Wellington say “this is our place too”.

We say to you this house has made a space for us to step forward to claim our place.

We will aim to live out our place in the community of humanity, proud of who we are and how we are, and in all of our diverse ways of being disabled.

We do not back away from that word in fear, in shame, in a feeling of being lesser.

We call on others in the community in which disabled people are part to include, trust and respect us, to not tell us how inspirational we are for doing everyday things. We want a fair go and a decent job.

Live with us not in fear or contempt, but in peace and harmony. It is our world too.

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Disability Pride Week

Disabled people have been increasingly self-assertive this year, through Me Before You protests, a vigil following Japan’s disability mass killing, increasing arts activities and participation, LitCrawl, “outsider” art exhibition, book publishing etc, great success at the Paralympics, a learning-disabled New Zealander chosen for the UNCRPD committee and the Disability Strategy reviewed at long last. There’s lots to celebrate in the week leading up to the International Day of Disabled People on December 3.

I’m no Pollyanna, and recognise there is still much to be done before Deaf and disabled people achieve true equality, but a pride celebration can promote change, strengthen community, and simply be some fun together.

A group of Wellingtonians have picked up the concept of Disability Pride, first formulated and celebrated by a group of public servants in the late eighties. We said “who we are is OK, What happens to us isn’t” – in short the social model of disability. It separates a person’s impairment from the effects of a disabling society. We celebrated with a festival of film, debate, theatre and other events. Add to that a human-rights-based approach to disabled lives and a celebration sounds good.

Disability Pride is about valuing our whole selves and our experience, however we frame our identities, taking our rightful and equal place in the world, and drawing strength from one another.

Taking stock of the journey, celebrating what we have gained and looking forward to future change is a good way to finish up a shaky and tumultuous year.

Disability Pride Week begins this Sunday at Te Papa, claiming our place.

Disability Pride Week, claiming our place is written in large white letters on a square pink/purple background.

Disability Pride Week events 2016

All events are in accessible venues with audio describers, hearing loop, NZSL Interpreters present.

Sunday 27 November 2016 2pm
Launch of Disability Pride Week
Te Papa Marae (Level 4 marae)
All welcome.

Thursday 1 December
Tape Art Mural 10am – 3pm
Created on the window of Asteron Centre by disabled artists using tape
(Opposite Wellington Railway Station)
The Mural can be viewed by anyone for 5 days.

Saturday 3 December
Wellington Through our Lens 10.30 – 12.30
Odlins Plaza, Wellington Waterfront (near Mac’s Bar)
Open to disabled people and our allies.
Our open conversation about living in Wellington as disabled people will be captured by live illustrators.
Wellington City Councillors and the council Accessibility Advisory Group will be present.

Saturday 3 December
An evening of music and entertainment
Where: City Gallery, Civic Square
When: 7pm Saturday 3 December 2016
International Day of Disabled People
$10 per person RSVP Door Sales available.

Other events taking place:
Arts Access Aotearoa Auction
Thursday 1 December
CQ Hotel Cuba St Wellington
Doors open 5.45 Auction begins 6.00
$20 tickets from Arts Access Aotearoa.

Capital Support Morning Tea
A meet and greet with sharing of information
Friday 2 December 2016 10:00 – 11:00am
Conference Room in the Education Centre, Kenepuru Hospital
Parking: There are disabled car parks near the front entrance. If you don’t have a disability, please park in the public park on the left at the top of Hospital Drive
RSVP: For catering purposes or if you need support, please contact Nadine Martin: Email: capital support, (one word) at  CC DHB.org.nz; or Phone: 04 two three oh six four oh four. Space is limited, so please RSVP.

Check the Disability Pride Facebook page for updates.

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