Category Archives: Disability Rights

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from financial cost is the policy assumption that access to the digital world relates solely to education and work – an outdated view that does not take into account how connected our world is, and how socially isolated many disabled people are.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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Filed under Accessible Engagement, Disability Issues, Disability Rights, Inclusion, Information Accessibility, Web Accessibility

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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Crip the Lit at LitCrawl

This year particular attention has been given to the way disability is portrayed in various media. The Me Before You international debacle set off a chain of protests as the movie screened around the world. The film and the book that spawned it hit a nerve in the disability community. It was followed by the tragic mass murder of disabled people at Sagamihara, Japan in July, which deepened the rage and disgust with the way disabled people are seen and portrayed on screen and in other media. Most days we see examples of good and more frequently bad portrayals from around the world in social media.

2016 LitCrawl, a literary injection straight to the heart of the city. Saturday 12 November.

2016 LitCrawl, a literary injection straight to the heart of the city. Saturday 12 November.

We had already decided on the name for our Crip the Lit session at LitCrawl Wellington before all this happened. Several of us had been concerned for some time that “real” disabled voices were not being heard enough in the print world, that writing about disability in New Zealand is still too dominated by non-disabled people. There are good blogs by disabled people but little quality writing between books or stories about overcoming disability, and serious academic work.

Teaming up with other disabled writers seemed a sensible thing to do. When the opportunity at LitCrawl came up I was ready to gather some writers and seize it

Why did we decide on this title, knowing it would be provocative and contentious? Provocation is no bad thing if it promotes good discussion. And of course it has. But 140 characters on Twitter don’t give much space to explain why we chose it so I’m elaborating here.

The term Crip is not used lightly. It’s not an everyday word, and must be used sparingly and in particular contexts. I was influenced by the #Cripthevote US election campaign, and by the way #CripLit rolls off the tongue and is already used by other disabled writers in a similar way.

The word “crippled” of which “crip” is a shortened form, is an old word, a word that is seen as dated and stigmatising. Disabled people have more recently reclaimed it in the same way other marginalised groups have reclaimed words that have been used in hurtful ways. Claiming back such words is empowering and neutralises the hurt. It turns a former slur into a badge of pride. But of course it’s not always appropriate to use it, and its use is careful and conscious.

“Cripple” as an actual label or insult is so archaic, from a bygone era and mostly not used even by those who know no better terms. Other negative terms about disability are still used, and are therefore less safe to play with than “crip.” Most disability activists and disabled people won’t use words like “handicapped” or “retarded” either as reclaimed terms or even ironically.

But “Crip” can be ironic, edgy and humorous. It shows confidence in a community people often expect to be intensely self-absorbed, lacking a sense of humour, creating “misery memoirs” or needing “inspiration porn” to feel good about ourselves. Using the term “Crip” in this context shows we don’t take ourselves too seriously. We want to challenge the reader to think differently, to take a new look, to challenge ideas of “safety” around disability.

Using terms such as “crip” often indicates a sense of pride in who you are, an involvement in disability activism and culture, a sense of community. We know the social model, and we recognise that the term is not self-hatred or lack of knowledge but rather shows understanding of disability history.

“Crip” has been used by some disabled people for several decades. It has become inclusive over time, and can represent people with all kinds of impairments, while still enabling people to maintain their own important identity/ies.

Despite that, we know that not everyone will feel comfortable with the term “crip,” which is fair enough. For some it’s too risky, or the hurt is still too raw. We respect that and hope that people can move beyond that word to the content of our LitCrawl session. We’ll be speaking in our own voices, telling our own stories, and we won’t be appropriating the voices of others.

And of course respectful discussion and debate is always welcome. We don’t have to agree on everything.

Four disabled writers will read our work on November 12 Crip the Lit at the CQ Hotel, 7.15 – 8.00. Trish Harris has just published her terrific memoir, The Walking Stick Tree, Mary O’Hagan’s insightful memoir and analysis of the mental health system, Madness Made Me was published a couple of years ago. Sally Champion and I will read from our current work and work in progress. Come and join us!

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