Category Archives: Disability Issues

by | July 16, 2014 · 8:13 pm

A voice for everyone

This is an edited version of a keynote speech delivered at the disability conference, How do we all raise the volume of the unheard voice?,  Auckland July 2 2014.

Robyn stands at the podium delivering her speech. Tena koutou tena koutou katoa  Minister Turia, Health and Disability Commissioners. Ladies and gentlemen. Greetings to you all.

Thank you to the HDC and others who have organised this day. Thank you for asking me to speak.

This is one of the few opportunities people in the diverse disability community have to meet and exchange ideas. It is valuable and important. Let’s make the most of it.

Raising the volume of the unheard voice is an important subject. We have one day to work to achieve progress on this together. Let’s make it count.

There is a Chinese proverb, some say a curse, that goes “May you live in interesting times.” There is certainly a lot happening in the world of disability right now. And then there is the election.

Wicked problems

The disability world is complex, and fraught with nuance. Many of the disability-related issues we grapple with could be called wicked problems.

“Wicked problem” describes a problem that is very complex, difficult or impossible to solve because of incomplete, contradictory, and changing requirements that are often difficult to recognize.

The term “wicked” means resistance to resolution, rather than evil.

Because of complex interdependencies, the effort to solve one aspect of a wicked problem may be inter-connected with other problems. It might be a problem where stakeholders can barely agree on the definition of the problem, never mind the solution.

Past solutions won’t work. We’ll need to respond with innovation, creativity and by involving everyone we can think of and more besides. We won’t find a quick fix or silver-bullet solution for a wicked problem.

Raising the volume of the unheard voice may well be a wicked problem.

Before we look at the ways we can respond, let’s explore what we mean by talking about raising the volume of the unheard voice.

Defining “voice”

A comment on the meaning of “voice”: Not everyone communicates with a voice in the usual sense. People use NZ Sign Language, communicate with a synthetic voice, or by facilitated communication for example. By using the term “voice” I mean everyone’s way of communicating.

We’ll hear lots of different voices here today, reflecting our rich diversity. Who’s here? Who’s not here? Who should be here? Who do we bring with us? We all bring different perspectives to the day. I hope I can offer food for thought.

Who do we mean when we talk about the unheard voice? At one level it is obvious. We are literally talking about the people with no voice, people who are non-verbal, with the highest support needs, and who, like the recipients of the recently-publicised Ashley Treatment, have no voice of their own.

Of course we are.

But at another level raising the volume of unheard voices is less obvious and more complex. There are very few people, if any, who cannot indicate their feelings or preferences in some way if those around them are tuned in.

While exercising legal capacity can be more problematic it is not the whole issue either.

Silencing

Writer Arundhati Roy said “There’s really no such thing as the ‘voiceless’. There are only the deliberately silenced, or the preferably unheard.”

Silencing is an apt concept in our community.

For those who are deliberately silenced we only have to look at the Deaf community, deliberately silenced for generations by having their language and culture suppressed. That language and culture have flourished as Deaf assert their “voice” But many Deaf people now worry that the prevalence of cochlear implants may be a different means of silencing their “voice” And we know that there is a shortage of interpreters, and not enough captioning.

People with mental illness or learning disabilities are often silenced when seeking justice. They are, after all, “mad or incapable. We can’t believe them” is a common response.

Others are in no particular order:

  • Adults with dyslexia
  • People with speech impairments
  • people who are deaf/blind
  • Some Maori and Pacific disabled people
  • Disabled women generally
  • Disabled people who have English as a second language, who are from a different culture, or who are lesbian, gay, bi-sexual, trans-sexual  or intersex
  • People with impairments such as those with a mental illness and another, non-related impairment, where one or other is ignored
  • The over 50% of disabled people with multi impairment
  • Older disabled people
  • Deaf and Disabled people and their families in rural and remote New Zealand

And there will be others who are still generally unheard in our siloed world.

A word of caution. Let’s not get into the very unhelpful “my disability is more important than yours…” discussion.

People are finding their voices. People First are finding their own voice. People with autism are finding theirs too, following much international aggravation about who speaks for them, which brings me to the question of, “Who speaks for whom?  Some disabled people feel their voices are still appropriated by others. Something we all need to be clear about in our own activities.

Pretty much all disabled people and their families can be “silenced” in different ways, and at different times in our life journeys, times perhaps when we are feeling at our most vulnerable.

How we are silenced

In The Hidden Abuse of Disabled People Dr Mike Roguski explores the ways disabled people are silenced, particularly in relation to abuse, but this kind of silencing happens in other situations too.

He points to a variety of silencing processes:

Disabled people, and/or those associated with them are pressured to not report incidents of abuse. Or their complaints are ignored by someone else.

The pressure to not report abuse is subtle, reinforced through conditioning where people have learned to be silent. It can include

  • negative experiences resulting from past complaints
  • fear of retribution
  • a concern that removal of a care worker or a family/whanau member would mean loneliness and a lack of care
  • instances when the disabled individual believed they were somehow deserving of abuse, or unworthy of good care
  • Normalisation of poor treatment
  • Difficulties some disabled people experience communicating, for non-verbal people and those with limited understanding and inability to complain.
  • Undermining. Complaint negated because a disabled person couldn’t be believed.

Negation generally involved:

    • Disparagement of the individual complainant – they are a trouble-maker
    • questioning the degree of truth underpinning a complaint because the person was diagnosed, at some point, with a mental illness
    • collusion – an agreement to deny an abusive incident. Collusion is about protecting others from statutory “interference” or protecting a person or an organisation’s reputation. It’s not limited to organisations. A family/whanau could collude with the disabled person to protect someone.

Some of the silencing and other ways people are deprived of a voice relate to power imbalances, gate-keeping, and sometimes ownership.

Nor is it always about non-disabled v disabled people. Sometimes it is about privilege and inequality. Privilege and inequality exist within the disabled community and within the same disability groups. It needs to be honestly and openly confronted and addressed.

Access to communication and decision-making

A Deaf leader said “Access to communication is access to life” Communication isn’t restricted to being able to speak, or write, or use Sign Language. Most importantly, communication is compatible with significant cognitive impairment or what people might call “severe learning disabilities”.

Considering our many and varied communication needs and how they are met is critical. Do non-verbal people have adequate access to the technology to support them? They may need a combination of technology and skilled human interaction to enable them to have an authentic and independent voice of their own. This voice will give them the freedom to venture out beyond a very small circle of people who, through constant contact have learned to understand them.

“Supported decision-making” is a concept whose time has come. It means that everyone who needs support to exercise their legal capacity has a right to be provided with the support that makes it possible for them to express themselves and communicate their wishes.

Internationally it is gaining ground as the CRPD is spreading, and the right to exercise legal capacity is being explored in a human rights context.

International disabled people’s organisations of people with experience of mental illness are strongly promoting it.

In New Zealand IHC has contributed some of their service users’ recorded experiences to the Inclusion International discussion on supported decision-making,

Strong community, government and disability support services buy-in for furthering this work in New Zealand is essential.

Independent living and advocacy

In some countries the independent living movement has been a powerful means for disabled people to raise their voices, and for advocacy. There is a need for more independent advocacy, for those prepared to “speak truth to power” and to challenge the sometimes oppressive structures and systems that can deprive people of a voice. Australia has some well-established independent advocacy services which can act with some of the most disadvantaged and marginalised disabled people.

Being an ally

Allies are important. Disabled people need allies, both as other disabled people and as non-disabled people, and among bureaucrats and policy people. There are a number of ways you can be a good ally.

  • As an ally consider your position, privilege and the benefits for example of you are, white, relatively well off, male and so on. These may intersect or not with disability. I am a middle class white woman with enough to live on and I identify as disabled. What does this mean in my relationships and for me as an ally to other disabled people?
  • Make a list – When have you been the recipient of discriminatory behavior. How did it affect you? How do you feel about people who are different from you?
  • Do your homework about others. Don’t expect them to “tell all”, to spill their guts. Listen, read, watch video. Take responsibility for being informed as much as you can.
  • Be clear about what you are doing as an ally and why. Think it through.
  • Think about the difference between charity and “standing with” people.
  • If you are a service provider or a DPO think about the culture of your organization. What can you do, where you are, to make a difference as an ally?
  • Don’t be afraid to make a mistake or be uncomfortable. That’s OK. It’s part of the learning process. People can tell if you are genuine.
  • It’s also OK to make amends and to apologise. But don’t always expect a pat on the back for it.
  • Do your own work within your own community with others on the same journey so you don’t feel like you are doing it on your own.

There is a danger that change will simply be incorporated into the existing structure and processes. There will be little impact, if cultural, in the widest sense, and values issues are not explicitly addressed.

What we can do

Today we have some time to reflect and find some practical actions and outcomes, rather than indulge in a talk fest. We have to ask ourselves. What will we do differently after today? We want outcomes that are practical and doable.

The Government action plan includes some real opportunities for enabling individual voices and the collective disability voice. Someone once gave me some good advice. She said “Go with the overt message.” She meant that if someone has written down somewhere their intent to do something, take it at face value and pursue it for all you are worth. Go for it while you can.

We can also

  • improve our disability analysis and discourse, raise the level and quality of discussion in various fora
  • remember and honour our history so we don’t repeat it,
  • question hierarchy,
  • demolish siloes,
  • harness the creativity of all disabled people,
  • Learn from the strategies of others – What do Maori and Pacific and other cultures have to offer us all?
  • build relationships of trust,
  • Make smart use of enabling technology.
  • Find new and different ways of enabling people to tell their stories
  • Support the move to get a crown apology for injustices and abuse experienced by disabled and other people in state and state-funded care, for their voices to be heard
  • Support the 20percent campaign encouraging disabled people to vote and assert that growing voice in the political arena
  • And very importantly, be open to all the “voices,” no matter how faint, hard to understand or confronting

As disabled people, if we stick within our own group we all share the same limitations. Together we can do everything and with being nearly a quarter of the population, 24%, we are a force to be reckoned with if we can only get ourselves together. In partnership with others there should be no stopping us.

Creating disruptive change

In order to bring about real change the entire system has to be disrupted so that the focus is on creating more opportunities for people to communicate their preferences and experiences with dignity in their own way.

I hope today can begin to identify some disruptive change, change that will disrupt entrenched patterns of behavior, for all of us.

I wish everyone a satisfying, challenging and productive day. And in the voice of disabled people everywhere, “Nothing about us without us!”

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by | June 10, 2014 · 11:16 am

Levelling the playing field for disabled women

This is an edited and updated version of a speech given on a panel at Rehabilitation International Seminar, Embracing the Opportunities April 16 2014, held in Wellington.

Disabled women in New Zealand have made progress but there is still a long way to go. I will not outline yet again in detail the many inequalities faced by disabled women. For many disabled women the playing field is some distance away, never mind whether they can access it, or whether it is level or not.

In 2014 disabled women in New Zealand are still relatively invisible  and our interests, rights and perspectives are still neglected. We are still generally left off the agenda.

There is still systemic discrimination and a lack of understanding of the issues we face as disabled women, for example, mothering our own babies, the right to found a family, or for some women, sterilisation without their consent, a subject which has been in the news lately, relating to Article 17 of the CRPD  the integrity of the person. Women’s health and other important information and services are still quite inaccessible to us. A Google search for disabled women in New Zealand finds very little.

The current debate about social and economic inequality is exclusive of disability generally, never mind disabled women.

To continue the sporting analogy we are way behind the eight ball in international terms. That includes being behind some developing countries where disabled women are finding a strong voice.

Green MP Mojo Mathers’ message to disabled women at a celebration on International Women’s Day in Auckland earlier this year was reported as “Speak out when you see or experience injustice, identify potential partnerships to strengthen your voice and lobbying power and believe in your ability as women to make change happen.”  The message was to ”inspire change.” Celebrations are important, as is inspiration. But right now much more is needed. We need concerted and collected action.

Disabled women today

There is no longer a women’s caucus in DPA. That’s not because there is nothing left to do.  DPA has a policy on women. I know there is one because I and other disabled women helped to write it a long time ago.  There is now only one woman on the National Executive. What is the situation in other Disabled People’s Organisations?

Vision Impaired Empowering Women, VIEW was founded as a move for progress and a voice for blind and vision impaired women. It is now a localized support group.

We are forgetting our history. The inclusion of disabled women in the 120 years celebration of women’s suffrage Tirohia Mai exhibition, last year, was an attempt to reclaim it. But after the disabled women’s presentation alongside the exhibition the following discussion was more about disability history generally than about disabled women’s history or rights. It is clear that the energy of the eighties and early nineties has been dissipated.

Ironically this has happened at a time when we have more tools for progress at our disposal than we have ever had.

Tools for change

We have protection under the Human Rights Act and the Health and Disability Commission Act.

Objective 14 of the Disability strategy says “promote participation of disabled women in order to improve their quality of life.”

The CRPD takes the “twin track” approach” with Article 6 focusing directly on rights for disabled women and with disabled women’s issues threaded throughout. Our government is obliged to pay attention to disabled women’s rights.  And there are the other UN conventions such as CEDAW, the women’s convention and CROC, the children’s convention.

We have the Office for Disability Issues which has always been headed by women, and the Think Differently campaign.

There are also less formal, but potentially powerful tools available, in the form of the arts, the media and the Internet and the range of social media. Women With Disabilities Australia are a great example with their networks, web site, research, and publications. There are many excellent disabled women bloggers here and elsewhere. Social media are a very valuable tool for the growing International network of disabled women.

But in practice in New Zealand every other issue always seems to be more important and little work has been done on analysing what the twin track approach of the CRPD might mean today in a New Zealand context. There is no focus point for disabled women’s issues.

Sometimes in the disability world it is difficult to focus on the gender issue. Violence against women in a disability context tends to be lost in the compelling wider issue of general violence and abuse of disabled people, or issues for other, non-disabled women.

Disability is complex and nuanced, but we can no longer avoid the need to unpick these complex issues.

The intersection of disability and gender seems to create a barrier to the collective imagination. I am not sure why, since other groups of women are confronting intersections of gender and race for example, with some vigour.

In New Zealand we have not developed any widely accepted discourse on women and disability. We have not applied a gender analysis to disability or a disability analysis to gender, never mind other intersections.

Disabled women are leaders, but we are expected to lead on behalf of all disabled people, or to be content to see leadership as individual personal achievement.

Ageing disabled women

But action is becoming more urgent. As the population ages and women, disabled and non-disabled, live longer the numbers of disabled women are outstripping the numbers of disabled men. There will be more increasingly frail older disabled women who are living in poverty because of a lifetime of limited education and employment options.

The need for data

The response we often get is that there is no information about disabled women. That is not good enough. When the Disability Survey results from Statistics New Zealand come out next month we should expect and demand that all reports include gender analysis. We have to demand the same from everyone who collects any disability data, from MSD, the Ministry of Health, service providers and anyone else who collects and analyses population and other related information. Good information provides a strong foundation for us to build a level playing field.

Where next

Nothing will be handed to us. Without action from disabled women the playing field will remain the same as it has always been, distant and lumpy.  It needs leadership from us. We have to make our voices heard and work together across disability groups. Let’s not be seduced by individualistic approaches to progress. We may have to do things differently.

We can look for opportunities to add a disabled women’s perspective, as well as identifying and prioritising particular issues of importance to us. For example, there are opportunities for a gender perspective in the new government action plan for disability? There are also people who can be strategic allies and supporters, disabled and non-disabled. We have to find them and enlist their support.

Disabled women need an active and strategic voice to make change. How we develop that voice is the question. How do we develop a feminist and disability analysis for the twenty first century? I am interested to hear what disabled women think on the topic. This is a challenge to action.

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by | May 1, 2014 · 11:50 am

From disableism to human rights

The free online dictionary defines disableism as “discrimination against disabled people”. This is rather simplistic and does not state that discrimination is both direct and indirect, the direct being, for example, an employer not giving me a job for which I am well qualified simply because I am disabled. While this is distressing, inappropriate, misguided and often unlawful, it is the disableist indirect discrimination that is often harder to confront, quantify and eliminate.

Disableism as indirect, or systemic discrimination is the result of unspoken, unquestioned and often unnamed bias underlying cultures, values, systems, structures and some deeply seated religious beliefs.

Underlying attitudes and behaviours carry an assumption that disability is not normal, that it equals a lesser human value or is outside the range of regular human experience. Those who practice indirect discrimination are often unaware that their actions are discriminatory.

Indirect discrimination as disableism occurs when an apparently neutral policy, practice or criterion disadvantages people because of their disability or other characteristics, or a combination of their intersecting characteristics, such as disability and age, race, gender, sexual orientation etc. Unless the practice can be objectively justified it is discriminatory, or disableist.  A one-size-fits-all approach can easily lead to disableism or indirect discrimination.

An example of indirect discrimination: a company insists that all those applying for jobs as have driving licenses because there is an occasional need to deliver or collect work from clients. Since this prevents some people with disabilities from applying and as driving is not a core requirement for the job, the company is discriminating against this group of people, unless it can demonstrate that there is an objective reason to justify this. This kind of discrimination is quite common.

Other examples are;

  • Barriers in the built environment because universal design is not planned in.
  • Inaccessible information provided in only one format.
  • Education practices that exclude a variety of disabled children who may need extra time for exams, for example
  • Television programmes and movies that exclude through a lack of audio description, captioning and Sign Language.

While negative attitudes which result in disableism are harder to deal with they can be addressed, along with indirect discrimination in policy and practice.

Using a human rights analysis to confront and challenge disableism gives us access to a range of tools to combat it. Many countries have human rights legislation, and there are the United Nations international covenants and conventions, the most important of which is the Disability Convention  (CRPD.) Using these and educating ourselves and others about them can move the debate from a disabling and disableist one to one of rights, respect and dignity for everyone.

This is my contribution to Blogging Against Disableism Day.

 

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by | January 29, 2014 · 7:54 am

New Zealand Sign Language: A cultural treasure

A rather late very happy New Year to all readers of Low Visionary.  May 2014 bring real progress on disability rights and accessibility all over the world.

Prompted by recent spirited discussion about the decline of New Zealand Sign Language,  and the equally spirited continuing debate about cochlear implants, here is my perspective on the value of New Zealand Sign Language in the New Zealand context.

I should say at the outset that I am not Deaf. Nor can I communicate in New Zealand Sign Language. The visual, spatial qualities inherent to it are beyond my visual capacity. I do know how to work with a Sign Language interpreter though. Since meeting the New Zealand Deaf community many years ago I have been fascinated by their language and history, as well as getting to know some great people.

Over those years I have learned a great deal, joined in with the celebrations of Deaf community victories, and supported their campaigns for access. The Deaf community are articulate, confident, outward looking, and one of the most creative communities around.

It is sad that, although New Zealand Sign Language is one of our official languages, it does not seem to be recognised widely as a national treasure. This was brought into sharp focus for me recently when thinking about Sign Language while working on an arts accessibility project.

Sign Languages should be treasured as precious cultural artefacts in their own right. In some settings they are. In 1993 I watched a riveting and inclusive one woman theatre performance in American Sign Language at the Kennedy Centre in Washington DC. Closer to home in 1996, along with other international conference attendees in Auckland, I watched, spellbound, a skilled interpreter yodel, (in NZ Sign Language) along with the Topp Twins. She was as much a star as they were. I have attended other Signed performances, watched Sign singers, lots of Sign Language interpreted meetings and gatherings and enjoyed Deaf humour.

Yet more than twenty years after my first Deaf cultural encounter, and long after New Zealand Sign Language has become an official language, when I visit the web site of Te Papa Tongarewa,  our national cultural storehouse I find no trace of New Zealand Sign Language. There is lots of Maori content, probably not enough, and information in seven other languages besides English and Maori. Is it because being Deaf is associated with deficit rather than with language and culture? Is providing Sign Language seen as a cost which will add little value, rather than as a celebration of the linguistic and cultural heritage of a unique New Zealand community? How about providing information accessibly to New Zealand citizens who are entitled to it?

Kudos to the National Library which has recognised the importance of New Zealand Sign Language and decided that all exhibitions will be introduced in all our national languages. Kudos also to the theatres and arts organisations that have recognised and included Deaf language and culture in their work.  Others need to follow these examples. They could start by joining the activities during Sign Language Week celebrated in May each year.

The New Zealand National Anthem in New Zealand Sign Language, English and Maori. The video is an example of our three national languages, all of which are part of our history and culture.

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