Low Visionary

I thought I had finished this series but recent events prompted this additional post.

Since 1987 I have spent a great deal of time consulting and engaging with disabled people. It started with the Royal Commission on Social Policy in 1987 and continued with setting up Equal Employment Opportunities (EEO) networks in the public service, through Non- Governmental Organisations processes and government committees and working parties. In 2001 we launched the NZ Disability Strategy after a huge national round of consultation. Then it was the Human Rights Commission Inquiry into Accessible Land Transport, The Human Rights Action Plan, and all the processes around the development of the Convention on the rights of persons with Disabilities, (CRPD) and so on. I have taken part in both sides of the process, as a professional within the consulting organisation, and among those disabled people and disabled people’s organisations being consulted.

So I was a tad taken aback the other day when a well-meaning public servant seemed to be going over well-trodden ground by politely asking a gathering of the disability community – How do you want us to engage with you? It was not so much the question itself as what seemed to be the assumed newness of the exercise.

The response from some was fairly predictable. A deep sigh, a list of preparatory reading, a quick lesson in recent history and a brisk request that the process simply be handed over to disabled people along with a reminder of “Nothing about us without us”.

But the fault is not with the individual public servant, who is usually well meaning and wanting to be respectful in the face of an audience which can be prickly at best and downright curmudgeonly at worst. Public servants, like the rest of us, often have to work with tight time frames and budgets. The problem is a lack of institutionalised knowledge, and inflexible and unresponsive bureaucratic processes in organisations meant to be for the public good. The wheel gets reinvented again, an unproductive and frustrating exercise for everyone.

So I thought I would develop a wee guide to help the hapless public servant new to disability to forge a respectful relationship with disabled people. Here are a few ‘do’s’ and ‘don’ts’ to get you started.

• Don’t expect to be spoon fed – People get a bit tired of the constant question and the expectation that disabled people will always be available and willing to volunteer to answer questions on your terms. They get a bit tired, grumpy and overloaded just as you do.
• Do your homework. Check up on what is already known about engaging with disabled people in your organisation. What structures, networks and processes are already established? Ask your colleagues. Check out what your organisation has done in the past. What worked? What didn’t?
• Do discover that many of the problems you want to know about have already been described to a high standard and at great length by disabled people. Read the latest information produced by disabled people. I personally recommend Disability in Aotearoa New Zealand – a report on the Human Rights of Disabled People in Aotearoa New Zealand, published in 2010 by the Convention Coalition, a coalition of disabled people’s organisations. But there are many more.
• Do learn a bit about disabled people and their organisations, which may be quite different from their service providers. Most of them have web sites.
• Don’t expect the Office for Disability issues (ODI) to be everything to everyone. There is lots of useful information about engaging with disabled people on their web site, but they were originally established to do policy work. Other organisations have responsibilities to disabled people too, and leaving everything to the ODI creates the ghetto disabled people are desperate to avoid.
• Do read the CRPD and learn about your organisation’s responsibilities towards disabled people. One or two government organisations are beginning that journey.
• Do use other information in the public arena, the census and disability survey information from Statistics New Zealand, the CRPD and the Disability Strategy. If you can’t find essential information in the public arena demand that it is collected. Read publications such as To have an Ordinary Life – I could write a whole reading list.
• You might even find some useful information in my previous posts on this topic or at AccEase.

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One of the difficulties of engaging with the diverse community of disabled people is its “siloed” nature. Disabled people have been divided into very distinct disability groups. This is as much as a result of history as anything else. But the result is different services and different approaches to advocacy by and for groups of people with different impairments. Unfortunately this separation creates barriers to inclusion at the best of times, never mind times of crisis and disaster. Everyone has to work together in emergencies for the benefit of all and to make sure there is best use of scarce resources. Good preparation and building respectful and productive working relationships in better times will help enormously.

• Take a pan-disability approach incorporating the principles of universal design and make information fully accessible to everyone, not just an ad hoc approach to one or two groups who are the most vocal or who manage to get some funding. It doesn’t have to mean that one size fits all either. Different people with different impairments will have different needs.
• Recognise that capacity building and education in disaster preparedness may be necessary before the event for disabled people and emergency services people.
• Make sure emergency centres are fully accessible and have at least one person on duty who has some knowledge about disability and have other resources available on call if at all possible.
• Implement accessible processes so disabled people can help themselves and each other. The use of New Zealand Sign Language following the February quake is an excellent example. How might other groups of disabled people be included?
• Engaging through individual advocacy and reference groups will not be the only answer. A variety of communication channels and engagement strategies are needed to reach everyone.

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The UN Convention on the Rights of Persons with Disabilities (CRPD) says in:

Article 11 – Situations of risk and humanitarian emergencies

States Parties shall take, in accordance with their obligations under international law, including international humanitarian law and international human rights law, all necessary measures to ensure the protection and safety of persons with disabilities in situations of risk, including situations of armed conflict, humanitarian emergencies and the occurrence of natural disasters.

The CRPD, which New Zealand has ratified, is concerned with disabled people in times of civil emergency and conflict and the responsibility of the state towards them in these situations. Nowhere was this responsibility more apparent than in the Christchurch earthquakes and their aftermath. In such situations disabled people are in the same situation as everyone else but face particular problems of access in every sense, with disruption to their environment and the services they need.

They had difficulties navigating a changed and damaged environment, access to water and food and access to information, and for some access to personal care. Some had damage to their essential equipment.

But disabled people were not merely passive victims during the Christchurch earthquakes as the mainstream media would have us believe. They helped themselves and each other and the emergency services. For example Radio New Zealand’s One in Five told of a non-verbal wheelchair user giving up their shoes to a distressed tourist with cut feet. A disabled woman opened her accessible home to other disabled people.

Emergency services did their best of course in difficult circumstances. Mostly things worked fairly well, but there is always room for improvement, and for learning from experience. Many disability services were out of action in the first few days so the emergency and rescue services had to cope. In retrospect what could have been helpful?

I have been reflecting on the events and talking to people involved and have some suggestions. Here are the first of ten points for inclusive engagement

• People within emergency and rescue services must know the community of disabled people. Building good relationships before the disaster will really help. It can’t be left to service providers who will have their own difficulties in the first instance
• That means good planning in advance – planning for real inclusion in emergency preparedness and response
• Listen to disabled people and their organisations before the disaster.
• Know the difference between organisations “of” and “for” disabled people and how and why they differ
• Don’t make assumptions about how disabled people might behave or react in particular circumstances.

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