A talk for International Day of Disabled People Chelmsford Dec 2009

Apologies if this seems familiar!

I wish to propose that excellent map making will solve many issues we face as disabled people.

I want all disabled people:

• to be aware of the issues that affect their lives
• to record them in their own voice
• to use available technologies to map these issues, present these issues to others and negotiate appropriate solutions
Being or becoming a disabled person leads to serious complexities and issues of management – one study found a disabled person had to navigate between 27 different people and organisations to get the solutions they needed.

Any disabled person by definition is a highly experienced project manager and director, negotiator and problem solver. Disabled people have very high levels of experience, skills, attitudes and knowledge to build fulfilling lives.

There are very real issues of institutionalisation to be tackled.

If it can go wrong, it will, especially around disabled people.

What did we do to offend the gods?

Coherent assessment, support and response networks and solutions do not yet exist for disabled people. There are bits of good services, but they are not seamless, joined up and person centred.

The allegedly normal becomes regularly as complex as a mission to the moon.

Going to a youth club requires taxis turning up with appropriate ramps.

One young man had to be manually handled into a youth worker’s vehicle and taken home without his powered wheelchair – meaning he could not go to school the next day because the taxi did not turn up.

Things unravel very rapidly and get very messy very quickly for a disabled person.

We spend incredible amounts of time and energy interfacing with hospitals and similar institutions, being ill, in pain and dependent on others.

A young woman, an excellent skater, was not allowed by her college to attend a Xmas Ice skating event because of alleged health and safety concerns about her disabilities.

She was also formally marked as a poor attender after informing the college she had difficulty getting there in the mornings because of health reasons and would they make reasonable adjustments.

That college has a very good equalities policy but had somehow interpreted disabled access as being about ramps and not about attitudes.

A young woman was turned away from a night club because her face did not fit.

Restaurants like Pizza Hut frequently become full when a disabled person in a wheelchair turns up.

There is institutionalized discrimination in that shops refurbishing frequently “forget” to design in inclusive access.

Bullying does occur in schools.

The United Nations [1] has written:

Despite being the world’s largest minority, persons with disabilities are largely ignored.

Youth with disabilities are amongst the most marginalized and poorest of the world’s youth.

Although, they face the same issues as their non-disabled peers, societal prejudices, barriers, and ignorance further exacerbate their concerns.

In many places, there is considerable stigma and sometimes shame imposed on disabled young people and their families by their communities.

Feeling embarrassed and ashamed, families often do not acknowledge having a disabled young person and may limit the interaction of the disabled young person with the rest of society.

The greatest impediments continue to be discrimination, prejudice, and social isolation.

Ignorance of disability concerns results in the needs of disabled young people being unrealised, leading to a loss of self-esteem, self-worth and the creation of social isolation.

Globally, there are over 650 million disabled people, and around a third of these are youth.

Nearly 80% of disabled young people live in developing countries, and although the actual figures are uncertain, it is clear that disabled young people form a significant proportion of the youth population in every society.

Disabled young people are severely under-researched, with limited data on prevalence and the effects on youth themselves.

Education is as critical for realizing the full potential of disabled young people, as it is for their peers.

Yet, more than 98% of children with disabilities in developing countries do not attend school.

Educational institutions are often inaccessible and lack appropriate facilities, and teachers frequently have preconceived ideas about what is appropriate for their students with disabilities, often resulting in the exclusion of disabled young people from certain activities.

Not receiving the skills and qualifications to function in the wider society, limits the employment opportunities for disabled young people.

Unemployment rates for persons with disabilities are higher than the non-disabled population in every society and discrimination and negative perceptions of disabled young people pose a formidable barrier to disabled young people looking for employment.

However, these societal misapprehensions can be addressed.

Greater awareness and understanding of disabilities is fundamental to improving this situation.

Technological innovations such as the Internet and software adaptations have created opportunities for disabled young people, helping to break down barriers and increase their sense of belonging and interaction with their peers.
Convention on the Rights of Persons with Disabilities

In 2006, the Convention on the Rights of Persons with Disabilities was adopted by the General Assembly.

It offers youth with disabilities in numerous countries effective human rights for the very first time, facilitating the process that empowers them to address the multiple societal challenges they face.

It prohibits disability-related discriminatory practices against persons with disabilities and asks Governments to implement legislation and measures to promote the rights of persons with disabilities.

It stipulates the rights to education, employment, health and well-being to ensure that young persons with disabilities develop their full human potential.

[1] http://www.un.org/esa/socdev/unyin/disability.htm

I wish to evolve personal solutions, and assist with the creation of strong social networks and life plans or maps.

This involves close liaison about health care and support planning, both with a wide variety of immediate issues and into the long term – the creation of life maps.

These would be multi-dimensional maps:

• Where someone has come from, where they are now, where do they wish to go

• Their geographical environment – how accessible is it, issues, strengths, weaknesses

• Their social environment – their relationships with institutions, communities, businesses and individuals. The Attitudes they meet.

Instead of negotiating a probably incomplete and institutionalised set of “services” for which someone may or may not be “eligible” we want to plan and map in detail with disabled people a multi dimensional change architecture that is right for the person, their family and their community.

I wish to develop self-assessment templates about this. The agenda here includes individual budgets.

Volunteering, the arts, sport, transport and employment are critical parts of this.
The experience of the Beijing Paralympics has many excellent examples that can be used in London to construct a lasting legacy of a truly accessible Britain and world.

John Barrow Cosmic Imagery writes:

Maps symbolise a human desire to understand and be in control of our surroundings.

To map a territory was tantamount to possessing it.

Maps of the heavens offered an ultimate reassurance that all is well with the Universe, that we were at a focal controlling point within it and had a special part to play in its unfolding story.

We are aiming to construct personal life maps – learning to act of one owns volition with others.

Mapping

We are aiming to get disabled people to map their experience and environments in terms of accessibility and attitude, and reporting this on things like google maps and the equivalents of rough guides for disabled people – mapping our lives.

Maps are very useful things to help us get from one place to another. Why not create personal life maps together of where we want to go with our lives?

Geography and disability are completely interrelated.

Maps are a superb way of managing knowledge and knowledge is power!

We all use maps everyday of varying sophistication.

I have done some sailing and very detailed charts are used to navigate safely – my brother in law still had to be rescued by the RNLI from some sandbanks though!

Mountaineers and the armed forces also use detailed maps.

There are also now satnavs and rough guides and tube maps.
I am proposing that a small group of disabled people begin to record their day – to – day experiences using modern technology like blogs, google maps and web pages and begin to build up detailed maps of their experiences.

Actual physical barriers like steps at a railway station would be recorded as they are experienced by a disabled person – the equivalent of a crevasse in a glacier.

Attitudinal barriers, customer focus would also be recorded allowing a grading or rating of different places and organisations, as we do for hotels and restaurants.

A Kafka Scale of how bureaucratic something is, like a Beaufort or Richter Scale?

I would wish to cascade this idea by starting locally and then getting it copied regionally, nationally and internationally – eventually achieving a world map of what it is like to be a disabled person where ever you are.

As Gregory said to Augustine a long time ago – mountains are climbed a step at a time!

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