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.
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.
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.
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.
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!”