A Continental Conversation on Disability and Development
Ecuentro – June 11, 2012
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 the
question, "What next?" For my part I want to suggest that the concept Universal Design be part of
whatever 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 range
of situations without special or separate design. Most simply, Universal Design is humancentered
design of everything with everyone in mind.
Universal Design imagines people with disability. It imagines them as citizens. It imagines them as
customers. It imagines – and employs – them in all stages of the design process as experts on
their own experience.
Here today we may be policy makers, development professionals, project administrators or in some
other 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 only
search where we see the light. We are here to figuratively shine the lights gained from our initiatives
for the benefit of each other. Let me start out with an example of what the world looks like when we
use Universal Design to facilitate the full inclusion of people who are color blind. Color blindness is a
condition 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 at
least some of the social meaning of color so that those who cannot directly perceive those colors
through their senses are able to manipulate color in ways that have been made meaningful in their
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 of
humans. Just inventing a symbol set to represent color provides access to new information for
someone who is colorblind. Those who adopt the ColorADD symbols in consumer products and
public 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 than
sight to take in essential information. The solution was invented by Coco Raynes. She calls it the
Raynes Rail. If you are ever in De Gaul Airport you will find them. They look like normal handrails
along the wall. They are not. On the backside is wayfinding information in Braille. You read it as you
walk along to your destination.
There is a story that used to circulate around Eastern Europe. A wise rabbi was seen down on his
knees on the side of the road one night under a streetlight. He was examining the ground intently
sweeping 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 looked
up 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 the
Rabbi'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 you
looking 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 then
we are doomed to live in the circle of light. But that is not who are presenters are. Each one has
reached outside the known to learn from the disability community. Each on has come back having
solved some need and at the same time empowered people with disbilities to be the agents of
control in their own lives.
Governments have an essential role in guaranteeing equal rights for persons with disabilities by
ratifying the Convention on the Rights of Persons with Disbilities and through programs such as
Ecuador's Manuela Espejo Project and Brazil's "Viver sem Limites." Charitable organizations play
an essential role in eduction and service provision with projects like Chile's teleton. Some answers
are not sustainable by governments or NGOs but require the business sector and the profit motive
to support themselves. Here is the story of two designers who decided to use Universal Design as
the foundation of their hugely successful business. The company is called Smart Design. They sell
their products under the brand OXO. The lesson here is that by imagining persons with disabilities
as customers but insisting that their products have an esthetic and emotional appeal to all
customers this company was very successful.
[Play Video: About OXO]
(Time 2:05 minutes)
The OXO video we just saw illustrates what are known as the Seven Goals of Universal Design. You
hav 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 Body
2. The design keeps demands within desirable limits of body function and perception That's
3. The design ensures that critical information for use is easily perceived That's Awareness
4. The design makes methods of operation and use intuitive, clear and unambiguous That's
5. The design contributes to health promotion, avoidance of disease, and protection from
hazards That's Wellness
6. The design treats all groups with dignity and respect That's Social integration
7. The design incorporates opportunities for choice and the expression of individual
preferences That's Personalization
One way to express the core secret hidden in Universal Design is this: "Design for the extremes of
human diversity." It should not be surprising that this inclusive approach would be the historic
contribution of the disability community through Universal Design inventor and quadriplegic, Ron
Mace. It ought not surprise us also if we see some completely new policy approaches, social
projects, or consumer products come as a result of the intimate knowledge of Ecuador's disability
community gathered through the Manuela Espejo Project. Universal design is a process that
requires partnerships with representatives of the full range of human diversity throughout the design
Human beings change things in ways no other animal does. We see patterns in the world around us
and 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 little
bit 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 distinguished
from play. Disneyland, which likes to think of itself as the world’s playground, made up its own word
to capture this seriously playful process “Imagineering.” With the word they are trying to signal
the atmosphere they want – an atmosphere of delight. A magic place where all are included through
You pass into the Magic Kingdom – Disneyland and you are comfortable. You feel included. In
some 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 profitable
enterprises in the world? Wait! A company that sells the temporary experience of participation as a
citizen makes a profit and even grows?
There is a secret here to be discovered. Disney wants to design the experience of surprising a
customer by meeting, then surpassing, their expectations. That is delight and it is the secret to
winning loyalty and its profits.
As you have heard I work in the area of tourism. We know we have achieved our destination
mangement goals when we can present travelers with that experience of delight, as I must admit
my friend Juan Francisco Maranon has done the past few days at his Huasquila Lodge in the Napo
Amazon region. We believe Universal Design is a greatly underutilized strategy for development and
inclusion of those with disabilities. One of the unexpected results of research done in 2002 and
repeated in 2005 was the sheer size and dynamism of the market. Surveying only Americans with
disabilities it was discovered that they were spending $13.6 billion per year on travel and lodging. In
addition, those suveyed reported that the key changes that would entice them to travel more
frequently had less to do with phyical accessibility of the built environment and more to do with
travel industry staff gaining a basic idea of the life experience of people with disablities in order to
allow them to seamlessly participate in society through travel. Put simply, what we want more than
physical access is social inclusion.
The rallying cry of the disability rights movement of the 1970s and beyond was, "Nothing about us
without us." Demands were made by persons with mobility impairments to be taken seriously as
citizens. 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 that
providing 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 one
particular group as outside what was considered normal. So, part of the "What next?" that we need
to cover through this Encuentro is how to insert our collective focussed knowledge of persons with
disabilities to create solutions that serve all people. We do thaT by evaluating our knowledge with a
Universal Design approach or, known as it is known by its other names "Design for All," "Lifespan
Design," or "Inclusive Design."
Universal Design is unvoidably a progressive and democratic process because it engages with a
marginalized population that crosscuts all levels of society. It reveals patterns of inequality of
opportunity and privilege even in such seemingly nonpolitical activities as tourism. Engaging in the
process of Universal Design helps identify barriers and understand the nature of the challenges to
be overcome. If we want to understand why an idea so practical and powerful as Universal Design is
not 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 who
are ill through hospitals. Historically architects borrowed from prisons and hospitals to design
special institutions to house people with disabilities. In all cases someone is being protected and
someone isolated even when they are the same person “isolated for their own protection.”
Western civilizations have historically used charitable institutions to care for people with
disabilities. However, when people with disabilities are confined to institutions, they are
rarely found in public spaces or living in residential neighborhoods; thus, it appears that it is
unnecessary to provide accessibility to the community outside the institutions. Not only is
the inmates’ spoiled identity reinforced by the message that they cannot take care of
themselves or participate productively in society, but the lack of accessible environments in
the outside community also reinforces the belief.
~ From Chapter1: Barriers and the Social Meaning in Universal Design: Creating Inclusive
Environments 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 a
pragmatic perspective stigmas are socially created and thus can be eliminated. Universal Design is
about 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/her
society [and] is rejected as a result of the attribute. Stigma is a process by which the
reaction 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 so
provides for group solidarity by delineating "outsiders" from "insiders" (Falk, 2001).
The book, Unraveling the Contexts of Stigma, by Catherine Campbell and Harriet Deacon
summarize 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 individuals
3. Mobilize the public
Each way suggests a primary actor:
1. Nonstigmatized individuals becoming informed
2. Government legislating
3. Stigmatized and nonstigmatized individuals joining in public solidarity
Today I am emphsizing a fourth actor: Business. Produce products designed from the expectation
that there will be greater interaction between abled and disabled people. Find the need in the market
and sustain yourself through profit.
Let nonstigmatizing products, like OXO, redefine societal and cultural attitudes toward people with
In societies where a Universal Design philosophy has been adopted Drs. Steinfeld and Maisel note
There is a typical trajectory in architecture as societies develop more advanced
perspectives on disability. The first stage is the architecture of exclusion, usually by
neglect. The second is one of dependence through development of a legal framework and
physical environment that eliminates discrimination and removes barriers to independence.
We are now moving toward a new stage in many societies: the architecture of social
participation, with the goal of equality in opportunity through universal design.
~ From Chapter1: Barriers and the Social Meaning in Universal Design: Creating Inclusive
Environments p. 17
We can take what we know in our fields and apply that knowledge to "Design for the extremes of
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 Vitruvian
Man with his famous sketch.
Ron Mace invented Universal Design and inspired us to redraw the sketch.
If we are going to take the tremendous knowledge that is locked away in various academic fields
and shape it into places, things, information, communication and policy to be usable by the widest
range of people operating in the widest range of situations without what we produce stigmatizing
them 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 with
disabilites define their identities once given the opportunity:
[Play: Quem Disse Que Nao Sou Capaz?]
Set at Full Screen Mode
(Time: 2:21 )