“Safer in the Road”: An Assessment of Disability Access in La Libertad, Peru by McKinley K. Benson

“Safer in the Road”:

An Assessment of Disability Access in La Libertad, Peru

McKinley K. Benson

Ethnographic Field School – Peru

USU: Michelle Grocke

 

Disability is a complex topic of discussion involving social, political, cultural, medical, economic, and infrastructural subjects. Much of the literature on disability access speaks only to access as a whole, rarely defining its many parts. In this paper I will define accessibility and assess its subcategories in order to create a discussion of how access can be identified and improved systematically. Persons with disabilities (PWD) in Peru face unique challenges. Their access on the streets and walkways, as well as to buildings and public transportation is highly limited. There is, however, a cultural component, here defined as a cultural substitute, that helps to bridge the gaps of inaccessibility. In this paper, I explore the complex relationship between inaccessible spaces and cultural substitutes. To approach the subject of disability, I have limited my view to physical disabilities and limited mobility.

The setting for my ethnography is La Libertad region of Peru. I collected data during a five-week ethnographic field school in June 2017. Some of my data is drawn from a collective of fourteen undergraduate students, my professor (nutritional anthropologist Michelle Grocke, PhD), and our in-country contact (cultural anthropologist Rafael Vasquez).

Literature Review

In Peru, a person with a disability is identified as someone with “one or more physical, sensory, mental, or intellectual deficiencies of a permanent nature” which impede the person’s ability to fully exercise their rights or impedes their “full and effective inclusion in society” (CONADIS 2017b).  Peruvian law prohibits the discrimination of any person based on disability (CONADIS 2017a). Law 29973, the General Act on Persons with Disabilities, contains clauses for employment, accommodation, anti-discrimination, and information for businesses operated by people with disabilities (Congress of the Republic of Peru 2012). Despite these laws, persons with disabilities face discrimination and lack many social and employment opportunities in Peru.

The rate of disability in Peru is roughly 5.2% of the population (ILO 2014). The total population of Peruvians with disabilities was 1,575,402 in 2014 (ILO). The government offers a blanketed statement of protection for PWD and is making an effort to improve the quality of life for those who live with disabilities in Peru. Full and partial disability pensions are now offered to qualified individuals who are unable to work because of a permanent disability (Grushka and Demarco 2003).

Methods 

Due to the holistic nature of life with a disability – it being social, physical, political, etc. – I used a mixed methods approach to study the quantitative and qualitative aspects of disability access in La Libertad. Specifically, I assessed this issue is three cities: Huanchaco, Trujillo, and El Milagro.

In the primary method of unobtrusive observation, I walked through the spaces of interest. I gauged how accessible a building, walkway, or street is for people with limited mobility. I looked for six key criteria through these assessments. First, at the entrance of a building, is the threshold flat or does it have a step or an access ramp? Second, within buildings, if there are multiple stories, is there a way to get PWD above the main floor? Third, are walkways wide enough to accommodate a standard size wheelchair in regular pedestrian traffic? Fourth, are walkway corners flat, or do they have a stepped curb or an access ramp? Fifth, what is the condition of walkways (cement, brick, cobble; uneven, broken, potholes)? Sixth, are roads in a safe working condition that PWD can cross without being delayed or harmed?

I engaged in participant observation whenever possible to gain an emic (insider) perspective. This included attending events, going to markets, and speaking with locals. More importantly, participant observation included discussing with locals their views and knowledge of disability, as well as hearing their personal experiences with family and loved ones.

In addition to participant observation, I also used ethnographic mapping. This proved a useful tool for depicting the locations of accessible and inaccessible places. I first drew macro-level maps to show an aerial view of a part of each of the aforementioned three cities. I then overlaid the macro map with a conceptual map that demarcated points of accessibility and inaccessibility for people with limited mobility.

I drew data from asset-based questionnaires, which was the collaborative effort of my fourteen student colleagues, my professor, our in-country contact, and me. These questionnaires provided both quantitative and qualitative information. The data was collected in El Milagro in June 2017. I specifically added two question relating to health and disability. They are: 1) Have you (or any relatives) been prevented from working for a long time because of any physical injury or health problems? and 2) Does your health or physical injury not allow you to work? The purpose of these questions was to ascertain the state of disability in El Milagro, since census data is non-existent. I also hoped to better understand who in the community struggles with their health, as that has a tremendous effect on all other aspects of life. As El Milagro is in a post-natural disaster state, following El Niño flooding, people with disabilities or health concerns may need extra aid.

I conducted two informal interviews with women in El Milagro. I asked if they knew of anyone in the community who has a hard time walking or whose health is bad. Both women responded affirmatively. This led to a discussion of how difficult it is to walk across the rubble in the city, as well as post-flood migration patterns to accommodate health needs. Our discussions also turned to the location and quality of health clinics.

One method alone is not sufficient to properly understand the intricacies of disability in La Libertad. This is an incredibly complex topic of which I have only begun to scratch the surface. It is only through a combination of qualitative and quantitative methods, offering both an insider and outsider perspective, that I am able to draw these analyses of disability in La Libertad region of Peru.

I feel it is appropriate to explain my unique role as an ethnographer in this instance. As a person with a physical disability, I am part of the disability community. I have certain background knowledge and insights that allow me to empathize with experiences of other people with physical disabilities. I am also a student anthropologist from the United States conducting research with Peruvians. I know comparatively little about the language, culture, religion, and people and am very much an outsider in that way. I am in a fortunately juxtaposed role of both insider and outsider, participant and observer. My experiences in Peru as a person with a disability impact my lens just as much as my anthropological lens.

Three Cities

I conducted a spatial analysis of disability access in three cities within La Libertad region of Peru: Trujillo, Huanchaco, and El Milagro. The cities differ in historical settlement, average economic status, and livelihood. They also have starkly different infrastructures ranging from well-preserved colonial heritage and asphalt roads, to cement buildings and brick cobble roads, to unfired adobe homes and dirt roads, respectively. As such, accessibility varies tremendously between these three cities, which are separated by only a few kilometers of highway. 

Trujillo

Trujillo, once the capital city in northern Peru, is a culturally rich and economically active city. Settled by Spanish colonizers, Trujillo’s architecture still heavily reflects the 15th century in which it was built. The streets are laid in a grid surrounding the central Plaza de Armas with the remnants of an outer wall (now a highway) circling the city. The Plaza itself is the size of a city block. It is made of concrete paths with benches and flower gardens interwoven, all surrounding an enormous monument. The monument consists of four wide sets of stairs, each in a cardinal direction, which lead up to a copper statue of a man holding a torch. Four concrete statues bow and reach out to the people just beneath the copper figure.

Immediately branching off the Plaza are dozens of shops, restaurants and cafes, museums, and other businesses. Each street is filled with every sort of vendor: artisans, mobile farmer’s markets, ice cream carts, tamale stands, and painters. Each street is also occupied by beggars who, almost without exception, have a disability.

In 2015, Trujillo’s population was just over 957,000 people (City Population 2015). By applying the national disability average of 5.2%, Trujillo has approximately 50,000 individuals with disabilities (International Labor Organization 2014).

My observations of PWD in Trujillo reveal elderly people accompanied by family members or caretakers, as well as beggars on the streets. Interestingly, of the fifty-six individuals with disabilities I observed in Trujillo, more than half are elderly. The few PWD who are young or middle-aged (those of working age) are almost exclusively employed as beggars. A colleague in my field school, a Peruvian native, said, “They work as beggars because that is the only way they can contribute to the family income. This is their job.” I will discuss the intricacies of employment for PWD in Peru later in this paper.

Huanchaco

The beach city of Huanchaco has a very different dynamic than Trujillo. Huanchaco was built and settled by the ancient Moche people of Peru. Elements of the Mochica culture prevailed through Spanish matriculation. Many of the local structures, stories, and traditions in Huanchaco have been preserved. One famous element still practiced today is the traditional reed boats, called caballitos de totoras or reed horses, which fishermen have used for thousands of years.

Huanchaco attracts a significant amount of tourists because of its surfing scene. Huanchaco’s waves are famous in the surfing community for being one of the longest surfs in the world (over a mile long). The tourism industry in Huanchaco has followed the demand. Dozens of hostels, cafes, and surf shops are set up on the road along the beach, each catering to various cultures and appetites. Locals set up artisan booths along the beach every day, and bring in business as both tourists and locals stroll through in their casual, carefree manner.

Huanchaco is significantly smaller than Trujillo, with a population of roughly 68,000 people in 2015 (City Population 2015). Assuming Huanchaco follows the national average, the city has approximately 3,540 residents with disabilities.  After living in Huanchaco for five weeks, I have not observed any beggars. I have seen many more PWD in age groups other than elderly, however. As in Trujillo, the elderly with disabilities are frequently accompanied by a caretaker. The children with disabilities are accompanied as well. The youth and adults with disabilities, however, seem incredibly independent in Huanchaco, often on their own, some holding jobs.

El Milagro

El Milagro is a migrant community filled with people from all over Peru who migrated closer to Trujillo for employment, economic, educational, and/or family gains. Migrant settlements exist in various places throughout Peru, especially near big cities (which are almost all located on or near the coast). These settlements are typically unwanted by the government, and therefore receive little help.

El Milagro is in a unique situation, however, because the town has just endured a natural disaster: several months of severe El Niño flooding. The floods destroyed most homes and businesses, and swept away many physical assets including tools, gardens, clothing, blankets, and food supplies. El Milagro, a resource-poor squatter settlement, was left with next to nothing. An older woman in the community pointed out the flood path, an area which used to house a textile factory and restaurants had been reduced to a field of dirt and rubble. “[The flood] took everything,” she said, “it just took everything.”

Though the town has physically fallen apart, the people have come together and formed a community kitchen (called the olla común or ‘common pot’) across the street from where the plaza used to be. The people in El Milagro have built a good support network among themselves. They do not receive much help from outside the community, partially because they have little outside contact due to limited and hard-to-access transportation.

Because El Milagro is a ‘squatter’ settlement, it is not part of any formal government census. Therefore, we gathered census data as part of our fieldwork in El Milagro. There are forty-two families in El Milagro. Of the seventeen individuals we conducted asset questionnaires with, six reported being unable to work (either currently or in the past) because of an injury or health condition. Furthermore, five people reported a family member being likewise unable to work. Injuries and health conditions range from back pain, headaches, and elbow injuries to kidney and heart conditions.

Access for People with Disabilities

The term ‘access’ in disability literature is often used as a blanket statement for the physical, social, and infrastructural elements of life available to people with disabilities. This is not a practical or effective method of evaluating access. I propose that access is better assessed when each element of accessibility is viewed in its own right.

Access to Spaces

            Accessibility is a key term used in disability literature. It is used to denote spaces that allow people with disabilities (in this case, limited mobility) to enter, exit, and use a space freely without limitation, hindrance, or complication. In countries with a developing infrastructure, like Peru, many roads, walkways, and buildings are inaccessible to people with disabilities. According to the National Council for Integration of People with Disabilities, in the year 2000 less than 1% of buildings in Peru were handicap accessible (Hunt 2011). Table 1 shows a comparison of accessibility on roads, walkways, and buildings in each of the three cities, based on the data I gathered during my fieldwork.

Table 1: Comparative Spatial Access by Type and City
  Road Material & Quality Walkway Material Walkway Quality & Access Building Entrances
 

Trujillo

Paved with asphalt. Fairly smooth, even, and flat. Cement or brick. The corners of most walkways are flat or have access ramps.

Sometimes narrow. usually blocked by vendors.

Fairly even distribution of flat, stepped, and ramp entrances to buildings
 

 

Huanchaco

Paved with asphalt. A lot of steep hills. Cement or brick. Most walkway corners have access ramps (though some of them are cracked or otherwise ineffective).  Walkways are frequently narrow and sometimes have big power poles or other obstructions in the middle. The majority of buildings have some sort of access ramp (either built-in with concrete or added on with a wooden or metal wedge.
 

El Milagro

Dirt, rock, and rubble. Very uneven ground. N/A (no walkways) N/A (no walkways). People walk in the roads and through fields of rubble. Homes (adobe or tent) nearly always have flat entrances.
Table 1. The types of access (roads, walkways, and building entrances) vary between Trujillo, Huanchaco, and El Milagro. Trujillo’s roads are fairly flat and in good working order (few potholes), which is ideal for someone with limited mobility to cross without obstruction, delay, or risk of harm. Huanchaco is filled with access ramps, both on walkway corners and at building entrances. This makes entering and exiting both streets and buildings more safe and efficient for PWD. Though El Milagro does not have good access on roads, homes in this city are incredibly accessible with their flat entrances.

 

As a PWD, having walked throughout Trujillo, Huanchaco, and El Milagro, I recognize a difference in access. The quality of roads has a big impact on how easily a PWD can move throughout the city. The roads in Trujillo are easy for me to walk and cross because they are flat and have few potholes. Huanchaco’s roads are slightly more difficult, simply because the city has a lot of hills. El Milagro’s roads are inaccessible to persons with limited mobility. The rocks and rubble create an unsafe footing, and the thick layer of dirt makes it further impassible for wheelchair users. Most of El Milagro is inaccessible to people with physical disabilities.

Walkways, if inaccessible, can also create problems for PWD. Access ramps are not the only concern. The safest path, or the most accessible path, is sometimes surprising, as I found out one afternoon in the middle of June 2017.

I am meandering through a crowd of vendors that line the street along the beach in Huanchaco. The street seems busier than usual for a weekday. There are a few families scattered through the area. I see a middle-aged woman in a wheelchair, dressed in a floral pink blouse. Her legs are very small with almost no muscle. Her wheelchair is incredibly nice: it is a custom-fit frame, the kind you can only get through a doctor’s prescription. It likely cost a lot of money (based on my knowledge of wheelchair prices in the United States). I watch her for several minutes; she is wheeling down the middle of the street, bypassing the sidewalks with access ramps!

I am suddenly very conscious of the fact that I have been staring, recognizing that I dislike when people stare at me for walking with a cane, so I dart my eyes in another direction. I walk to a fruit stand and look for a pomegranate. To my surprise (and joy) the woman in the wheelchair also comes to the fruit stand. Feeling nervous, I start up a conversation and ask her why she moves through the middle of the street.

“It’s safer in the road,” she tells me. “I can’t always get onto the sidewalks. Sometimes they are very small (narrow), and vendors take up the space. If I go in the road, I’m not in the way and no one is in my way. Cars will let me know when I need to move to the side.”  

This woman’s experience made me more aware of accessibility as more than merely access ramps. I walked around 75% of Huanchaco’s streets and came to a similar conclusion. The walkways are frequently narrow and usually have big electricity poles in the middle. Although all corners have access ramps, some are severely cracked, uneven, too far from the walkway, too steep, or otherwise ineffective. Vendors also take over the walking spaces. Anyone in a wheelchair is not able to use the walkways in Huanchaco.

Now interested, I did the same exercise in Trujillo and El Milagro, walking as many of the sidewalks as possible. Trujillo’s walkways are almost always filled with vendors. There is barely enough room for one person to walk between a vendor and the road, let alone let a wheelchair pass. The access ramps are in better condition in Trujillo, however (less steep). Again, El Milagro is a different experience entirely. The only imaginable walkways are the dirt roads or the fields of rubble left in the wake of the flood.

Building entrances are also a curious comparison. Buildings in Trujillo have a combination of flat, stepped, and ramp thresholds. I am rather amused by three storefronts beside each other, just off the Plaza de Armas in Trujillo.

I just stepped into a store called MiFarma, a small drugstore, and I am elated to see that an access ramp is built into the threshold! When I went outside, I saw the store right beside it, InkaFarma, another drugstore, has a large step. (InkaFarma is a large pharmaceutical chain in Peru. Should they be held to a higher standard? It seems to me that the largest pharmaceutical company should have a way for customers with disabilities to enter the store.) I find it interesting that two pharmacies right beside each other have such different levels of access. Across the walkway is a phone store, Claro, which has a flat entrance. Of course the phone store is more accessible than the pharmacy.

Huanchaco’s buildings are incredibly accessible. I have only been to a handful of buildings in the city that did not have an access ramp either built in or added on. However, in both Trujillo and Huanchaco, I am not aware of any multi-story buildings that have a way of getting people with limited mobility to floors other than the main.  In El Milagro, buildings (the tents and the remains of homes) usually have a flat entrance. Getting through the rubble to reach the edifice is the difficult task.

Access varies tremendously based on the age of the building. Building and construction codes in Peru were only updated with the inclusion of accessibility codes in 2012 as outlined in Law 29973. Newer structures being built in the region of La Libertad have many accessibility features. However, older buildings are not required to update their access, rebuild, or add-on accessible structures to meet a newer code. This causes a struggle to enforce the accessibility laws.

Employment

Peruvian Law 29973, the General Act on Persons with Disabilities, requires equal employment access be offered to PWD (2012). However, this law is not entirely enforced due to practical challenges. First, as discussed earlier, many buildings are not handicap accessible. It is incredibly difficult to offer gainful employment to a person in a wheelchair when they cannot even enter the building. There is also a certain stigma surrounding PWD. This is not unique to Peru. PWD are sometimes viewed as less capable than their able-bodied counterparts.

In Trujillo, most of the PWD I observed “working” were beggars. Beggars would sit on the walkways with hands outstretched, asking for money or food. One man would wheel through the streets calling out those who would let “a legless man go hungry.”

There are two notable exceptions that challenged everything else I had seen concerning employment for PWD in Peru. First, is a moto driver with one arm. A moto is a type of three-wheeled taxi with a motorcycle front and a covered bench for passengers in the back. The man is missing his left arm from the shoulder down, and somehow manages to drive a manual-gear moto with only his right arm.  The second man is a street musician (see Figure 1). He has one leg and uses a wheelchair to get around. To play his music, he gets out of the wheelchair and sits on the ground, and places a set of drums in front of himself. He plays the drums with both hands while playing another instrument with his mouth. I am certain there are more PWD who are employed; my time was simply too limited to meet more of them. It would be useful to ask business owners and employers if they would hire someone with a disability.

Mckinley1

Figure 1. Street musician with a disability in Trujillo, Peru.

           In Huanchaco, I have not observed any beggars. I have, however, met a few women in wheelchairs who own artisan and food carts by the beach. One partners with another woman selling picarones (fried sweet potato donut) and cachanga (fried bread). The woman who can stand, cooks. The woman in the wheelchair takes money and gives change. It is intriguing to see the contrast between Trujillo and Huanchaco: in Huanchaco, PWD have better access to building entrances, which increases the possibility of employment. There is also a thriving market for self-employment in Huanchaco, due to the tourism industry, which opens opportunities for PWDs to work for themselves or with family.

Transportation and Mobility

Public transportation is an inexpensive, effective way to travel throughout La Libertad. Micros (buses), taxis, and motos (motorcycle taxi) are readily available to Peruvians. Though these forms of transportation may not be available for Peruvians with disabilities. On micros, there are signs posted in the windows saying “seats reserved” for pregnant women, people with disabilities, people with big bags or groceries, and the elderly (See Figure 2). The unfortunate irony is that there is no way to get a person in a wheelchair onto one of these micros. Chair lifts and ramps are absent in the buses.

McKinley2

Figure 2. Sign in the window of a micro (bus) saying “Asiento Reservado” or “seat reserved.” The pictures show (left to right) a pregnant woman, a person in a wheelchair, a person holding groceries, and an elderly man with a cane.

Family and Cultural Support                                                                          

There is one tremendous comfort Peruvian culture provides in the face of inaccessibility, discrimination, and lack of support. Peru is incredibly centered on the family. Where the government, the employer, or the transportation system falls short, Peruvian families fill in the gaps. I interpret this as a cultural substitute, an idea I describe as an element of culture that supports individuals when the societal structure cannot.

For example, a person in a wheelchair in Peru will most likely not be able to get onto a bus, moto, or taxi for three reasons. First, buses do not currently have ramps or lifts; second, motos are not big enough to fit a wheelchair; and third, a taxi driver will likely not help put the wheelchair in the trunk of the car. However, aside from the beggars in Trujillo and the employees in Huanchaco, I have not yet seen a person in a wheelchair in Peru who was not accompanied by a family member, friend, or other caretaker.

Another example occurs in El Milagro. Following the El Niño flooding, any semblance of an accessible path was turned into uneven, dangerous ground full of rubble, debris, and potholes. When the Olla Común was established, residents with health challenges and limited mobility quickly realized that it is impractical to traverse the post-flood ground multiple times each day. The community members helped move PWD in El Milagro to new residences which are located closer to the Olla Común.

Now, when the community gathers for meals at the Olla Común, and everyone lines up to get food for themselves and their family members, PWD sometimes still have a difficult time there. The cultural substitute in El Milagro is that members of the community (family, neighbors, friends, etc.) take food to the PWD. The value that Peruvian culture places on family ties and respect for elders encourages these mutually struggling individuals in El Milagro to care for one another.

Discussion and Conclusions

The purpose of this research is to illuminate the disparities of access for people with physical disabilities in La Libertad, Peru and to better understand the range of factors influencing accessibility in developing infrastructures and resource-poor areas. Through my assessments of accessible spaces, employment, and transportation, I came to the conclusion that Huanchaco is most accessible of the three cities. Huanchaco has the most access to buildings and moderate-to-strong access to roads and walkways. I also observed the most employment opportunity for PWD in Huanchaco. Transportation appeared relatively inaccessible in all three locations (being most inaccessible in El Milagro); I recommend further research into the accessibility of transportation options.

A major focus of this ethnography provides a framework for measuring disability access. I identified subcategories of access – accessible spaces, employment, and transportation – in order to create a more effective way to assess accessibility. When accessibility can be specifically measured, the issue of inaccessibility can be solved in manageable pieces.

My goal is to bring attention to a pressing issue that is present in nearly every country throughout the world: PWD lack social support and access to employment and public spaces. My hope is to change the conversation from solely focusing on macro level issues, to a discussion of the individual experiences.

 

 

 

References

 

CONADIS. 2017a. “Marco Legal.” CONADIS, 2017. https://www.conadisperu.gob.pe/institucional/marco-legal

CONADIS. 2017b. “Registro Nacional de la Persona con Discapacidad.” CONADIS, 2017. https://www.conadisperu.gob.pe/registro-nacional-de-la-persona-con-discapacidad

Congress of the Republic of Peru. “General Act on Persons with Disabilities.” National Law, Peru, 2012. file:///C:/Users/admin/Downloads/ley-29973%20(1).pdf

Grushka, Carlos O. and Gustavo Demarco. “Disability Pensions and Social Security Reform: Analysis of the Latin American Experience. The World Bank: Social Protection Discussion Paper Series, no.0325 (2003). http://www.addc.org.au/documents/resources/20040317-disability-pensions-and-social-security-reform-analysis-of-the-latin-ameriecan-experience_724.pdf

ILO Global Business and Disability Network. 2014. “Peru.” International Labor Organization (ILO). 2014 http://www.businessanddisability.org/index.php/en/?option=com_countryprofiles&view=country&task=overview&Itemid=256&id=6

 

 

 

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