Ecuentro – June 11, 2012Scott Rains

Welcome to a continental conversation on disability and development.

We are here to review the excellent work being done around us on disability so we can answer thequestion, "What next?" For my part I want to suggest that the concept Universal Design be part ofwhatever each of us does next.

Universal Design is a process and framework for the design of places, things, information,communication and policy to be usable by the widest range of people operating in the widest rangeof situations without special or separate design. Most simply, Universal Design is human­centereddesign of everything with everyone in mind.

Universal Design imagines people with disability. It imagines them as citizens. It imagines them ascustomers. It imagines – and employs – them in all stages of the design process as experts ontheir own experience.

Here today we may be policy makers, development professionals, project administrators or in someother role we steer the public life. To do that we look for answers in the ways we know how.Sometimes our logic is so tight, our worldview so complete, and our tools so refined that we onlysearch where we see the light. We are here to figuratively shine the lights gained from our initiativesfor the benefit of each other. Let me start out with an example of what the world looks like when weuse Universal Design to facilitate the full inclusion of people who are color blind. Color blindness is acondition where ranges of color are indistiguishable for certian sighted people:

[Play Video: Código de Color || ColorADD]

http://youtu.be/QA9Ce8hvKuk (Time 2:05 minutes)

What we have witnessed is the invention of an alphabet of color. Color blindness was not cured.The lasting value here is that barriers to social inclusion by those who are color blind were removed.Inventing the ColorADD system provides accessibility to colors and their relationships. It reveals atleast some of the social meaning of color so that those who cannot directly perceive those colorsthrough their senses are able to manipulate color in ways that have been made meaningful in theirsociety.

Is the subtle distinction clear? Coloblindness is not treated as a medical problem residing in an

individual who needs a cure. The "cure" lies on a social level in understanding the natural diversity ofhumans. Just inventing a symbol set to represent color provides access to new information forsomeone who is colorblind. Those who adopt the ColorADD symbols in consumer products andpublic spaces are actively engaged in the social inclusion of those who are colorblind.

The is another example of good information design that allows those who rely on senses other thansight to take in essential information. The solution was invented by Coco Raynes. She calls it theRaynes Rail. If you are ever in De Gaul Airport you will find them. They look like normal handrailsalong the wall. They are not. On the backside is wayfinding information in Braille. You read it as youwalk along to your destination.

There is a story that used to circulate around Eastern Europe. A wise rabbi was seen down on hisknees on the side of the road one night under a streetlight. He was examining the ground intentlysweeping his hand over the ground in front of him as he slowly crawled around in the circle of light.A group of villagers saw him and hurried up the road to ask, "Rabbi, what are you doing?" He lookedup and said, "I lost my keys." The villagers joined him. Another villager arrived and joined the group.Finally a woman came up and asked, "What are you doing?" They answered her, "Looking for theRabbi's keys." She asked the Rabbi, "Where did you lose them?" He stopped what he was doing,looked up, and pointed down the road in the darkness. "Over there," he said. "Then, why are youlooking here?", she asked. "Because the light is here", he replied.

If we keep looking with the same strategies ­ or in the case of this story with the same senses ­thenwe are doomed to live in the circle of light. But that is not who are presenters are. Each one hasreached outside the known to learn from the disability community. Each on has come back havingsolved some need and at the same time empowered people with disbilities to be the agents ofcontrol in their own lives.

Governments have an essential role in guaranteeing equal rights for persons with disabilities byratifying the Convention on the Rights of Persons with Disbilities and through programs such asEcuador's Manuela Espejo Project and Brazil's "Viver sem Limites." Charitable organizations playan essential role in eduction and service provision with projects like Chile's teleton. Some answersare not sustainable by governments or NGOs but require the business sector and the profit motiveto support themselves. Here is the story of two designers who decided to use Universal Design asthe foundation of their hugely successful business. The company is called Smart Design. They selltheir products under the brand OXO. The lesson here is that by imagining persons with disabilitiesas customers but insisting that their products have an esthetic and emotional appeal to allcustomers this company was very successful.

[Play Video: About OXO]http://youtu.be/G1btXbIQLfo

(Time 2:05 minutes)

The OXO video we just saw illustrates what are known as the Seven Goals of Universal Design. Youhav seen them applied let's list them now:

1. The design is accommodating of a wide a range of body sizes and abilities ­ That's BodyFit 2. The design keeps demands within desirable limits of body function and perception ­ That'sComfort3. The design ensures that critical information for use is easily perceived ­ That's Awareness4. The design makes methods of operation and use intuitive, clear and unambiguous ­ That'sUnderstanding5. The design contributes to health promotion, avoidance of disease, and protection from

hazards ­ That's Wellness6. The design treats all groups with dignity and respect ­ That's Social integration7. The design incorporates opportunities for choice and the expression of individualpreferences ­ That's Personalization

One way to express the core secret hidden in Universal Design is this: "Design for the extremes ofhuman diversity." It should not be surprising that this inclusive approach would be the historiccontribution of the disability community through Universal Design inventor and quadriplegic, RonMace. It ought not surprise us also if we see some completely new policy approaches, socialprojects, or consumer products come as a result of the intimate knowledge of Ecuador's disabilitycommunity gathered through the Manuela Espejo Project. Universal design is a process thatrequires partnerships with representatives of the full range of human diversity throughout the designprocess.

**Human beings change things in ways no other animal does. We see patterns in the world around usand we recognize them. We invent new patterns and we impose them to make a new world.

The process we go through to intentionally change things is called design. Design requires a littlebit of engineering, a little bit of art, and a lot of imagination.

At some moments designing is intensely solitary. At other moments it can hardly be distinguishedfrom play. Disneyland, which likes to think of itself as the world’s playground, made up its own wordto capture this seriously playful process ­­ “Imagineering.” With the word they are trying to signalthe atmosphere they want – an atmosphere of delight. A magic place where all are included throughdesign.

You pass into the Magic Kingdom – Disneyland ­ and you are comfortable. You feel included. Insome unexpected way you are home. What you experience makes you surprised and delighted.You are a temporary citizen of a space and a culture that is … one of the most stable and profitableenterprises in the world? Wait! A company that sells the temporary experience of participation as acitizen makes a profit and even grows?

There is a secret here to be discovered. Disney wants to design the experience of surprising acustomer by meeting, then surpassing, their expectations. That is delight and it is the secret towinning loyalty and its profits.

As you have heard I work in the area of tourism. We know we have achieved our destinationmangement goals when we can present travelers with that experience of delight, as I must admitmy friend Juan Francisco Maranon has done the past few days at his Huasquila Lodge in the NapoAmazon region. We believe Universal Design is a greatly underutilized strategy for development andinclusion of those with disabilities. One of the unexpected results of research done in 2002 andrepeated in 2005 was the sheer size and dynamism of the market. Surveying only Americans withdisabilities it was discovered that they were spending $13.6 billion per year on travel and lodging. Inaddition, those suveyed reported that the key changes that would entice them to travel morefrequently had less to do with phyical accessibility of the built environment and more to do withtravel industry staff gaining a basic idea of the life experience of people with disablities in order toallow them to seamlessly participate in society through travel. Put simply, what we want more thanphysical access is social inclusion.

The rallying cry of the disability rights movement of the 1970s and beyond was, "Nothing about uswithout us." Demands were made by persons with mobility impairments to be taken seriously ascitizens. Immediate access to buildings and transportation were priorities yet "Nothing about us

without us" also evolved into a much more inclusive demand. Over time it became clear thatproviding the best accessibility for some really meant "Design for the extremes of human diversity."That needed to be done in such a way that everybody was served together without marking oneparticular group as outside what was considered normal. So, part of the "What next?" that we needto cover through this Encuentro is how to insert our collective focussed knowledge of persons withdisabilities to create solutions that serve all people. We do thaT by evaluating our knowledge with aUniversal Design approach or, known as it is known by its other names "Design for All," "LifespanDesign," or "Inclusive Design."

Universal Design is unvoidably a progressive and democratic process because it engages with amarginalized population that crosscuts all levels of society. It reveals patterns of inequality ofopportunity and privilege even in such seemingly non­political activities as tourism. Engaging in theprocess of Universal Design helps identify barriers and understand the nature of the challenges tobe overcome. If we want to understand why an idea so practical and powerful as Universal Design isnot universally applied we need to look at the purpose served its opposite – design for exclusion.

Physical exclusion by design is what society does to criminals through prisons and for those whoare ill through hospitals. Historically architects borrowed from prisons and hospitals to designspecial institutions to house people with disabilities. In all cases someone is being protected andsomeone isolated even when they are the same person “isolated for their own protection.”

Western civilizations have historically used charitable institutions to care for people withdisabilities. However, when people with disabilities are confined to institutions, they arerarely found in public spaces or living in residential neighborhoods; thus, it appears that it isunnecessary to provide accessibility to the community outside the institutions. Not only isthe inmates’ spoiled identity reinforced by the message that they cannot take care ofthemselves or participate productively in society, but the lack of accessible environments inthe outside community also reinforces the belief.

~ From Chapter1: Barriers and the Social Meaning in Universal Design: Creating InclusiveEnvironments p. 17

The error perpetuates itself because those who are stigmatized are not imagined as users, citizens,neighbors, or customers.

What is a “spoiled identity?” Sociologists use the word “stigma” to mean the same thing. From apragmatic perspective stigmas are socially created and thus can be eliminated. Universal Design isabout becoming aware of the stigmas and strategizing ways to eliminate them.

Erving Goffman, one of the most influential sociologists of the twentieth century, defined stigma as:

The phenomenon whereby an individual with an attribute is deeply discredited by his/hersociety [and] is rejected as a result of the attribute. Stigma is a process by which thereaction of others spoils normal identity. (Goffman, 1963).

Gerhard Falk, author of more than fifty scholarly works, wrote in Stigma: How We Treat Outsiders:

All societies will always stigmatize some conditions and some behaviors because doing soprovides for group solidarity by delineating "outsiders" from "insiders" (Falk, 2001).

The book, Unraveling the Contexts of Stigma, by Catherine Campbell and Harriet Deaconsummarize Goffman's ideas of stigma as universally including persons with these characteristics:

Overt or External Deformities

Deviations in Personal Behavior such a mental illness Tribal stigma such as race

They go on to suggest three main ways to challenge stigma:

1. Educate individuals2. Legislate3. Mobilize the public

Each way suggests a primary actor:

1. Non­stigmatized individuals becoming informed2. Government legislating3. Stigmatized and non­stigmatized individuals joining in public solidarity

Today I am emphsizing a fourth actor: Business. Produce products designed from the expectationthat there will be greater interaction between abled and disabled people. Find the need in the marketand sustain yourself through profit.

Let non­stigmatizing products, like OXO, redefine societal and cultural attitudes toward people withdisablities.

In societies where a Universal Design philosophy has been adopted Drs. Steinfeld and Maisel notethis:

There is a typical trajectory in architecture as societies develop more advancedperspectives on disability. The first stage is the architecture of exclusion, usually byneglect. The second is one of dependence through development of a legal framework andphysical environment that eliminates discrimination and removes barriers to independence.We are now moving toward a new stage in many societies: the architecture of socialparticipation, with the goal of equality in opportunity through universal design.

~ From Chapter1: Barriers and the Social Meaning in Universal Design: Creating InclusiveEnvironments p. 17

We can take what we know in our fields and apply that knowledge to "Design for the extremes ofhuman diversity."

We know that we are one the right path when we look from the long perspective.

Many cenuties ago Vitruvius wrote about architecture. Leonardo da Vinci summarized the VitruvianMan with his famous sketch.

[Vitruvian Man]

Ron Mace invented Universal Design and inspired us to re­draw the sketch.

[Homem Vitruviano]

If we are going to take the tremendous knowledge that is locked away in various academic fieldsand shape it into places, things, information, communication and policy to be usable by the widestrange of people operating in the widest range of situations without what we produce stigmatizingthem we need to know much more about what they want, what they do, even, what they look like.

Let’s end with some images that help us imagine. Take a look at how some real people withdisabilites define their identities once given the opportunity:

[Play: Quem Disse Que Nao Sou Capaz?]http://www.youtube.com/watch?v=Q_3M8RZC7fU

Set at Full Screen Mode(Time: 2:21 )

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