Independence versus abandonment among people with visual impairments in Puerto Rico throughout the 2017 hurricane season

Abstract

Two major themes emerged from a qualitative case study on the 2017 hurricane season in Puerto Rico and its impact on people with visual impairments. The first theme was independence as it related to personal autonomy. The second theme was abandonment as expressed by people with visual impairments from informal social systems and formal institutions. Interviews were utilized in Puerto Rico of people with visual impairments, representatives of organizations serving people with visual impairments, and relief agencies. The more skills in independence a person with a visual impairment had, the higher their wellbeing throughout the hurricane season. Abandonment prevented participants from navigating the 2017 hurricane season to their maximum capability. Independence and abandonment are discussed separately, how they influence each other, and how these themes extend to other disabilities and in relation to the COVID-19 pandemic.

Points of interest

• Some people with visual impairments had training to live independently and they found it useful in living through the hurricanes.

• Some people with visual impairments did not have much training to live independently and they said that if they had it, it would have been a great help during the hurricanes.

• People with visual impairments in Puerto Rico did not feel that organizations met their needs very well through the hurricanes.

• People with visual impairments in Puerto Rico said that society tries to take care of them too much and that this is a reason they do not get the independence skills they need.

• The more that people with visual impairments, or anyone with a disability, receives skills in independence, the less they will feel that they are not a part of the rest of society.

Keywords:

• Blind
• visually impaired
• hurricane
• Puerto Rico
• independence
• abandonment

Introduction

The 2017 hurricane season in Puerto Rico brought two hurricanes that directly struck the Caribbean U. S. Commonwealth island within a span of two weeks. Hurricanes Irma and Maria each set U. S. records in being in the top five most impactful regarding electrical blackouts and mortality rate (Marsters and Trevor 2017; MISPH 2018). The damaged infrastructure, reduced food and medical supply accessibility, and prolonged electrical power outages negatively impacted everyone on the island. For people with visual impairments, formerly reliable walking routes were compromised, and electrical devices previously depended upon became unusable (Rivera-Bermudez 2018). These challenges made access to aid supplies more difficult for people with visual impairments compared to the rest of the population.

This report is part of a larger qualitative case study of the 2017 hurricane season in Puerto Rico that focused on the experience of people with visual impairments (McCormack 2019). The notions of skills in independence for people with visual impairments and a sense of abandonment were major themes grounded in the data. In this study, “independence” refers to activities of daily living (such as personal care), and orientation and mobility (safe and efficient movement through one’s environment). While others have argued that independence is an overly western concept (Ashby et al. 2015; Reindal 1999), it is seen as desirable in the current study based on the desires expressed by study participants. This positive view of independence may be summarized by Tuttle and Tuttle (2004) in that as confidence in one’s skills in independence increases, so is there an increase in a sense of wellbeing which increases the capacity for the individual to contribute more to one’s community throughout the experience of a disaster triggered by a natural hazard.

“Abandonment” was a word used by a study participant and refers to both perceived and actual lack of services for people with visual impairments throughout the experience of a hurricane. Abandonment may also refer to social stigmas associated with visual impairments. The notion of abandonment is also related to a concept known as the social vulnerability perspective. This perspective asserts that people with disabilities are vulnerable when a disaster is triggered by a natural hazard, not because of an inherent vulnerability, but because of social processes that have put them in a vulnerable position (Wisner et al. 2003; Stough et al. 2016). An example is a policy called the Aid to the Aged, Blind, or Disabled which gives comparatively much less unemployment aid to people with visual impairments in Puerto Rico than in the mainland United States (Acevedo and Farnoush 2018; Morton 2016).

In addition to the social vulnerability perspective, the concept of globalization influenced the research approach. Globalization has affected Puerto Rico through its control by the U.S. Government and the potential access the island has to needed resources from other countries (e.g. USC 1958). The social vulnerability perspective and globalization aided this researcher in developing an inclusive research approach for the case study.

The following research question associated with the larger case study relates to the present discussion: How does having a visual impairment in Puerto Rico impact a person’s ability to prepare for, respond to, and recover from a hurricane? The influence of independence and abandonment on each other will be discussed, as well as their possible extension in relation to institutional efforts.

Research approach

Part of what causes social vulnerability for a people group is having a weak position within systemic structures (Wisner et al. 2003). Therefore, representation was highest of people with visual impairments in Puerto Rico, i.e. 21 from urban areas and eight from rural areas. Semi-structured interviews of these and related stakeholders from the 2017 hurricane season were conducted between November 2 and December 17, 2018. The related stakeholders included a representative of the federal emergency management Agency (FEMA), an Americans with Disabilities Act (ADA) technical specialist, the American Red Cross, and seven organizations serving people with visual impairments (OSPVI) in Puerto Rico.

Language interpreters were used who met three criteria: they must have proficiency in English and Spanish, they must have lived in Puerto Rico most of their lives, and they must have professional experience in providing services to people with visual impairments. The interpreter was used to the extent that the interviewee wanted the interpretation. Transcriptions were typed and shared with the interpreter to check for accuracy. After each interview that utilized the interpreter, the researcher debriefed with the interpreter regarding any “insider” cultural knowledge exhibited by the interviewee. After all interviews, the researcher interviewed the interpreter to check for overall cultural insights within the interview responses.

Themes were developed as they related to the research questions through constant comparison and classical content analysis (Leech and Onwuegbuzie 2007). To increase consistency of understanding between the researcher and the study participants, themes were shared with interviewees to check for their accuracy (Merriam 1998).

Participants

To find interviewees among individuals with visual impairments, the investigator started with personal relationships that had been previously established with agencies that serve people with visual impairments in Puerto Rico. Snowball sampling was then used with these agencies and individual interviewees. The relief agency representatives who were interviewed were found by snowballing from the specific person with visual impairment previously interviewed who had worked with them in the response and/or recovery phase(s). Using this method, the relationship between the person with visual impairment and the response agency was one-to-one. Thus, only agencies that worked directly with interviewees participated. All interviewees were age 18 or older.

Ethics

This study was approved by the institutional review board of the University of Massachusetts Boston on the use of human subjects. All data gathered from the interviews were kept confidential. The interviewees were kept anonymous by not using their names in the research report. Since visual impairment constitutes a low-incidence disability, and the number of individuals and organizations that serve them are relatively small, it may be possible for some readers of this study to determine individuals involved in the interviews. However, this was made explicit in the consent form to which the interviewee was required to give assent if they elected to participate. Furthermore, the consent forms addressed other potential ethical issues, including potential risks of participation and access to consent information. Due to the variety of text preferences that study participants had, consent forms were available in Spanish, English, braille, large print, audio, and digital formats.

Positionality of the researcher

This researcher is from the mainland U.S., which has had a history of colonialism in Puerto Rico (Briggs 2003; Rivera Ramos 2001). Moreover, there has been much negative media coverage about the U.S.’s handling of the response and recovery from the 2017 hurricane season (Barron 2017; Robles 2018). This fact had potential to heavily affect some interviewee responses. Also, the researcher was not fluent in Spanish which meant an interpreter had to be used.

Findings

Independence skills

Post-hurricane obstacles to independence

Multiple interviewees with visual impairments expressed how the post-Hurricane Maria recovery environment adversely affected their outdoor travel more than it did for other populations. Carlos, who had limited training in independence, mentioned the inaccessibility of his environment because of post-hurricane debris: “there were obstacles all over the place, and the lampposts were all on the ground, so I couldn’t go anywhere.” Similarly, Ramón spoke of the impact that the lack of neighborhood maintenance had on his safety: “the wild grass and weeds were overtaking so there was no sidewalk or anything, so I was walking along the street.” The risk that these interviewees faced was that of the possible harmfulness of obstacles in their walking path caused by Hurricane Maria. Additionally, there was risk in going around an obstacle and onto a potentially busy street where the traveller may not be accustomed to handling safely.

The director of an OSPVI used the word “nightmare” in describing people with visual impairments trying to navigate roads after Hurricane Maria. Traveling a “nightmare” post-hurricane environment leaves the person with a visual impairment with the choice of getting out of their house and facing an enhanced risk to physical safety, or to stay inside where there was commonly no electrical power and community interactions were limited. The director also mentioned the challenge for people with visual impairments to navigate the constantly changing floor patterns of emergency shelters.

People with visual impairments gave stories of how their independence was temporarily compromised in their homes. Valentina, an independent and college-educated mother, had to re-orient herself to her home for a time because furniture was moved to avoid water leaks from the roof. Sonia was limited in the aid she could provide her family as she was not able to hold her guide dog with one hand and much relief supplies in the other. Mateo, who works at a university, spoke of his post-hurricane challenges in getting to work:

It was very tough for me to be able to get to my work because I lose the only public transportation that works for me here. So, you can say, “well, it was closed for everybody.” Yeah, but, other persons can drive, or other persons can walk, using specific routes, other things. After the hurricanes, a lot of the routes that I walk have trees, and they were closed.

The lack of electricity and blocked roads made ride-hailing impossible for an extended time. Without access to ride-hailing services or public transportation, independent cross-town travel for a person with a visual impairment became significantly more difficult.

Some interviewees with visual impairments described the negative impact that the extensive community use of generators had on their senses during the recovery phase. Since nonvisual senses are often relied on by people with visual impairments, the sound and smell of the widespread use of generators had an especially adverse effect on travel and daily life. For example, Luis lives in a neighborhood with individual homes, and each housing unit had a generator. He explained the lengths he went to in blocking out the noise of the generators: “I need some headphones to handle that [because] we have noise from every place. From the front to the back. Every person has a generator, that makes it very difficult.” Luis’s use of noise-canceling headphones helped him handle the difficult post-hurricane environment and focus on other things that aided in his recovery, such as listening to audio books. Furthermore, Sonia used the word “disorienting” when describing the impact that the widespread use of generators had on her when she traveled outside of her residence post-Hurricane Maria. Although a person with a visual impairment may rely on things like the sound of traffic or the smell of a coffee shop for travel orientation, an unusually strong sound and smell, such as multiple running generators, can alter the confidence of independently traveling in a formerly dependable environment (Fazzi and Barlow 2017).

Systemic obstacles to independence

Organizations and social stigmas further prevented the maintenance of a previously held sense of independence. The Jones Act is a United States law that declares that only American flag ships may be used to import goods into Puerto Rico (USC 1958). Because of this stipulation, many items are more expensive in Puerto Rico than they would be on the mainland U.S (Isidore 2017). The long cane, a travel tool used by many people with visual impairments, is no exception. Although the Jones Act was temporarily lifted in 2017 (Chokshi 2017), many people with visual impairments were not able to afford to replace their long canes lost due to the hurricanes. One trainer in independence skills raised money to buy long canes and held a “cane party” in 2018 for her students so that they could receive a replacement long cane. Based on the excitement and attendance of the “cane party,” many people with visual impairments not only lost an important tool for independence because of Hurricane Maria, but an empowering and emotionally healthy one as well.

Sonia expressed a unique challenge she had in the post-Hurricane Maria environment that related to her guide dog. Her statement also highlights a lack of understanding by some public servants about the needs of people with visual impairments:

In a lot of cases there was fear. For example, there was a government-issued curfew for safety reasons, but I would have to go out to take the dog to the bathroom, and if I were to run into a police officer and explain my situation they wouldn’t understand because they don’t really interact with guide dogs or blind people very often.

Guide dog handlers are trained to establish and maintain routines with their dogs in order to optimize the performance of the handler and dog as a traveling unit (Franck et al. 2010). Common routines include when and where the dog relieves itself. The post-hurricane environment upset these routines for Sonia and her dog. Police officers were not treating them with understanding by demonstrating a lack of knowledge of what Sonia and her dog needed to do despite the curfew time.

The representative for a university disability office explained the lack of support for post-hurricane needs for people with visual impairments:

There really needs to be a plan and strategy in place to prepare and assist those that are visually impaired in times of crisis … so that there would be renewed efforts to assist the blind in everyday situations that are twice as hard for people with visual impairments than they are for people that aren’t disabled, such as going to the pharmacy, or grocery stores, or preparing their everyday needs.

This disability office representative, who is himself a person with a visual impairment, acknowledged that there were no organized efforts in general to assist and empower people with visual impairments after the hurricanes. He also pointed out the difficulty of access to basic needs such as food and medicine. His hope was that there would be “renewed efforts” for post-hurricane assistance and increased empowerment.

Emergency-related media accessibility. Multiple interviewees referred to the fact that televised hurricane-related information was not accessible. Although 18 interviewees mentioned the use of the radio throughout the experience of a hurricane, Gabriela relied on the television. She mentioned that the information given regarding news of coming hurricanes on the television was not accessible to her. Since television is both an audio and visual medium, there were times when communications were primarily given visually, thereby excluding people with visual impairments. A service such as descriptive audio, where an additional voice describes visual communication on television, was not widely available for news programming. Sonia made a similar observation of the inaccessibility of televised meteorologists. A representative of an OSPVI recommended the use of a text-reader of a scrolling news-ticker as a possibility for television stations to add. There is currently no formal guidance on how meteorologists should describe visual information on televised media for people with visual impairments.

Mateo described the problem of accessibility of the meteorologist website associated with the Government of Puerto Rico. He offered solutions of providing more text that can be read by screen readers for people who are visually impaired:

Something that I really think needs to improve and can be done, is the accessibility of the webpage of the local meteorologist … using the same webpage that everybody uses, and just provide it in text and with certain accessibility guidelines.

Mateo contacted the government office for meteorologists to advocate for increased accessibility. He was not only able to point out a problem but offered the specific solution of providing text for visual images that could be read by screen readers.

ADA concerns. The ADA is an American law that forbids discrimination of people with disabilities in public spaces (ADA 1990). The ADA applies in Puerto Rico. It requires that shelters provide emergency-related services and information in accessible formats, such as braille (ADA 1990). This was seen as an area of improvement by the ADA technical specialist involved in the study. Part of the ADA technical specialist’s job is to bring awareness of the need for accessibility to government and nonprofit agencies. If accessibility were a more important issue among these agencies, the awareness efforts of the ADA technical specialist and others would be lessened.

Furthermore, the ADA technical specialist explained a problem that a woman with a visual impairment had in not being allowed to bring her guide dog into the shelter: “I knew about a lady who has a service animal and wasn’t allowed to have it in the shelter, and she’s blind.” ADA law requires that people who use a service dog be allowed to bring them into an emergency shelter (ADA 1990). If government systems more adequately addressed ADA law related to information accessibility, the ADA technical specialist would be less likely to express these concerns.

Evidence of need of skills in independence

The perceived slow government response encouraged several people with visual impairments to express their observations of the importance of skills in independence. They noted that delayed access to support highlighted the need for people with visual impairments to have the necessary skills to sustain themselves until help arrived. For example, Natalia, who lives in a rural area said that it took 35 days after Hurricane Maria for any outside organizations to check on her community. Such a length of time for a community to be in isolation and to deal with the after-effects of a hurricane puts a greater burden on the knowledge and practice of skills in independence. Additionally, Natalia medically could not eat the canned food that was provided by aid agencies, so she had to cook food on her own. Because it took so long for any aid or electrical services to be restored in her area, she lost over 15 pounds. She had to rely on her own skills in independence to make meals and travel outside safely in a changed environment.

Several people with visual impairments expressed a desire for more disability-related trainings to be provided to emergency management staff at organizations and directly to people with visual impairments. Lorena addressed her desire for such training. She had the unfortunate experience that her home was flooded, and there was debris and fallen trees around her home. She had to throw away a lot of things from inside the house since it got wet. Lorena did not receive any disaster-related training or information despite living in an urban area where she would have a greater likelihood of access to such tools. She pointed out the lack of and need for emergency-related services in relation to people with visual impairments, “there should be services in place to inform, prepare, and assist people with disabilities, and there isn’t, and that is very heartbreaking.” Not only did Lorena point out the lack of services but also the emotional toll that not having those services had. Additionally, Luis addressed the lack of and need for training in shelter navigation. Lastly, Maya recommended town-by-town pre-disaster trainings for people with disabilities. Part of the reason for Maya’s recommendation is that it would create a better organizational awareness of who a person with a disability is in each town. This would make it more possible for organizations to check on them in the response and recovery phases. Although some government and NGOs may state that there are such services in Puerto Rico, multiple study participants were not aware of them.

Value of independence skills training

Organizations that participated in the study expressed that they observed differences in wellbeing among the people they serve in the aftermath of Hurricane Maria. The differences related to the amount of training in skills of independence that each client received. Those who had little to no training generally struggled with mental health versus the higher resilience of those who received more training. For example, the representative of an organization serving an older blind population shared such an observation as it related to Hurricane Maria recovery:

Those that had received independent living skills prior to the storm were able to manage better and were in a more relaxed state in their homes because they already had that training of where things were located in their home, how to access things, their own personal wellbeing, and that their homes were very well organized so that they were able to really maneuver within their home environment in a way that felt safe.

This organization’s clients who “manage[ed] better,” were in a “relaxed state,” and “felt safe” during the recovery process were linked with having received training in skills in independence prior to Hurricane Maria.

The representative of the organization serving an older blind population also described observations of clients who have some remaining vision but had not developed the habit of using the long cane. She said that if these clients had kept in practice in the use of their long cane, it would have been an empowering aid for them in the recovery process. The long cane is useful in finding obstacles in the walking path. The use of the long cane was especially helpful in a post-hurricane environment since there was a high amount of scattered debris and debris-piles from government-funded waste pickup on sidewalks.

The president another OSPVI explained the value of independence training by saying that each person with a visual impairment “has to be prepared to sustain and survive [a hurricane]. Not to depend on the help of other people. Every individual should learn how to survive during a crisis.” Although it is true that everyone should know “how to survive during a crisis,” this interviewee saw survival and independence skills as a particular need among people with visual impairments. This was expressed by other representatives of OSPVIs.

Mental health. Several interviewees acknowledged feelings of depression as a result of the 2017 hurricanes. However, Omar, among others, commended skills in independence as a way to combat post-hurricane depression. He said that, “just learning to use the cane has given me a more positive attitude and outlook.” A representative of an OSPVI felt that, after seeing to the immediate physical needs of its members, the primary burden of serving them was to create a physical and emotional space to deal with the mental anguish of lacking independence in the post-hurricane environment. He said, “one of my concerns was, this population with their own family during this emergency, they were marginalized. Their own family members put them in the corner and they suffered. I was very worried about that.” As a result, he ensured that the organization’s offices had power during the aftermath of Hurricane Maria so that its members could come and have a place to share their experiences.

Practical suggestions. People with visual impairments shared several practical tips that they learned in the experience of the 2017 hurricane season. Some of the lessons observed were not unique to people with visual impairments but rather were generalizable to all people who experienced the hurricanes. For example, some participants stated that they learned the importance of creating a family disaster plan. Some lessons that were shared, however, relate specifically to people who are visually impaired. The use of gloves was found to be helpful in keeping people with visual impairments safe when tactilely exploring the unpredictable post-hurricane environment. Valentina said, “I do think that maybe learning to use gloves … I was getting my hands in every which place and fortunately I didn’t get myself hurt, but a blind person should be aware that gloves are something to protect your hands just in case.” Furthermore, Mateo found that the use of gloves allowed him to engage with his neighbors to help clear debris. The use of gloves is not only helpful for people with visual impairments when moving debris but in navigating an unpredictable post-hurricane environment.

Luis, a student at a university, expressed the importance of having back-up batteries and solar power to for his electronic devices both for helping pass the time, when there was no centrally generated power, and to help continue his schoolwork. Moreover, several interviewees expressed their hope that more people would learn braille as that skill becomes more salient when there is no electrical power. Valentina stated she found that receiving training on how to light a gas stove was helpful. Additionally, Omar lives in a rural area where there is typically greater distance to access resources. He explained that growing a vegetable garden helped him provide food in a time when he could not get to a store. Although such a suggestion would be helpful for anyone regardless of their disability status, it would be especially helpful for people with visual impairments due to the possibility of not having access to food markets because of downed transportation systems and altered walking routes.

Abandonment

Twenty-five interviewees with visual impairments expressed a negative impression that they have felt from society because of their disability. Many related their feeling of social stigma as adding to their difficult experience throughout the 2017 hurricane season. For example, Lorena stated that she, as a person with a disability, felt abandoned by the government throughout the hurricane experience: “In general, there is a feeling of being abandoned. No attention was paid to people with disabilities.” Lorena related the general treatment of being abandoned by the rest of society as a person with a visual impairment to the lack of attention given throughout the hurricane experience.

Representatives of OSPVIs and the ADA technical specialist noted that the systems in place post-hurricane were not appropriately serving people with visual impairments. For example, the representative of an OSPVI, who also has a visual impairment, described the lack of priority he was given from others in government because of his disability. Because of this lack of priority, he was unable to fulfill his duties of checking on people with disabilities in the weeks after Hurricane Maria. He said straightforwardly,

I am requesting more participation and integration of the leadership of the central emergency organization that works directly with the disabled community. It wasn’t considered directly during this emergency. That’s why I said that personally I felt alone, and as an employee, I was left behind, too. Even though I’m the person that is in contact, working with the plans, identifying the persons in the regional area where I work … but I wasn’t considered.

He further added candidly, “I think that it was a discrimination that really the government doesn’t see that this is a blind person, that I can help.” This interviewee “felt alone” and “left behind” as a person who could have contributed much more in the response efforts. Furthermore, he did not expect anything systemically to change in the future for people with visual impairments in relation to disasters triggered by natural hazards: “Right now, I don’t see that we move in a good direction for people with visual impairments. Everything is going to be like before because I don’t see any moving forward from this experience.”

Furthermore, this interviewee addressed the lack of priority for people with disabilities in queues to get ice: “people with disabilities in emergencies stay in line for hours just for one bag of ice. Because nobody thinks, ‘oh, this guy is in a wheelchair, or this one is blind, let’s give them priority.’” Although several interviewees reported that there were separate queues for people with disabilities for ice and gas, those queues were not utilized in all regions of the island based on the data of this study.

In a post-data gathering interview of the interpreter, she explained her observation that although life had returned to normal for participants a year after Hurricane Maria, this unfortunately meant that the organizations serving them had not changed in how they interacted with them. Mateo summed up the feeling of many in navigating government and non-government systems after Hurricane Maria:

In terms of my experience as a blind person and the response of the agency, it was not a good response for any agency. We are blind persons, we are not a priority in any preparation or any plans. The agencies have been very, very late and has not done good to respond to any person, just imagine to a blind person … It is like, “well, this is something we have never experienced.” And they don’t know how to deal with that.

Mateo stated that, although the response was not adequate for everyone, regardless of visual status, it was especially tough for people with visual impairments. Nor did he feel that people with visual impairments were a priority before the 2017 hurricane season. He characterized relief agencies as behaving like they had never interacted with a person with a visual impairment.

Participant urgency

This researcher sensed from participants in the study an eagerness to participate and help the community of people with visual impairments in Puerto Rico. Although the interviewees with visual impairments were offered a $10 compensation for their interview time, about a quarter of them either rejected it or asked for it to be donated. They not only wanted their participation to be helpful for people with visual impairments in Puerto Rico but for the money to be used in ways that helped the community as well. Others told this researcher to keep the money, seeing it as a way to contribute to the cause of people with visual impairments in Puerto Rico; that the present study was helping to shine a light on a historically abandoned population.

A sense of urgency, because of abandonment, on the part of study participants may also be seen through the way in which interviewees were obtained in the present study. Representatives of four OSPVIs made abundant efforts to find interviewees. They expressed that part of the reason for their help was so that more attention could be paid to the population of people with visual impairments in Puerto Rico.

Another example of the eagerness of people with visual impairments to participate in the present study came from trying to schedule an interview with the representative of an OSPVI. This particular OSPVI representative was in an unusual position in Puerto Rico in that he is a person with a visual impairment and is employed in a relatively high-level government position. He undertook extensive efforts to invite representatives of other OSPVIs to his office on his interview day. He showed that he was ready to make his voice heard as well as others in his community, because he had not felt heard otherwise as described in the previous section.

Paternalism

For the purposes of the current study, paternalism is defined as a caring hierarchical relationship where the intent of the one giving care did not lead to empowerment of the one receiving care. The interviewees who mentioned paternalism in the present study discussed it in a negative way. Furthermore, paternalism and empowerment are at odds (Swift 1984). Based on the comments of the people with visual impairments in the present research regarding paternalism, this is a population that has been abandoned as it relates to empowerment. For example, Sonia addressed the paternalism/empowerment dichotomy with her comments on social attitudes toward people with visual impairments:

Because of the barriers that society has put on [people with visual impairments], which is more protective, we want to help them, and the way we help them is by keeping them at home and making sure that they are safe. Rather than empowering them or giving them any tools for independent living.

Sonia acknowledged the side of paternalism that was an attempt by many to be helpful, yet it can have disempowering affects. David, Ana, and a representative of an OSPVI also expressed how the over-dependence of many people with visual impairments in Puerto Rico was due to a paternalistic society. Additionally, it is possible that paternalism influenced the fact that some people with visual impairments did not use their training in independence skills throughout the hurricane experience.

Sonia further explained paternalistic attitudes and expressed the importance of raising awareness of the positive influence that a greater empowerment of people with visual impairments could have on society in Puerto Rico:

The problem is that there is a lot of misconceptions that blind people are unable to do anything; there is very little consideration taken into how to prepare these people for independent living. And oftentimes in these kinds of situations of natural disaster there’s an idea that those people would be a hazard if they were to leave their homes. So I think that those stigmas would need to be lifted and we need to continue raising awareness that people with visual impairments are members of society and can be productive and helpful and accounted for. And they rarely are in my experience and other people that I’ve known.

Sonia addresses three things in the above comment: first, of the societal misunderstandings of the capability of people with visual impairments. Second, that there was a systemic and social lack of effort on how to provide skills in independence to more people with visual impairments. Third, that there was a prevailing societal understanding that people with visual impairments should stay indoors after a far-reaching disaster-event. She referred to these issues as “stigmas” that need to be eliminated so that people with visual impairments can be seen as contributors during an island-wide emergency, as well as in all aspects of social life.

Some participants with visual impairments mentioned issues dealing with a lack of empowerment and the desire to use the post-hurricane phase as an opportunity to improve. Even though she had only been a person with a visual impairment for two years, Alondra stated that, as a result of the post-Maria challenges for people with visual impairments, she had goals of increasing empowerment: “But there are [people with visual impairments] where family members don’t think that they could be independent. My vision and mission is to get those people out of their house. Teach them that they can do things.” The desire she shared was a comment on the need she saw in her community, and that she hoped to be a part of the solution.

Participant hope for improvement

The hopes of participants for post-Maria improvement in empowerment and inclusion are another evidence of past abandonment. For example, Rafael mentioned the marginalization of people with visual impairments but that through the recovery process, more attention may be a benefit: “Unfortunately, people with disabilities are a marginalized community. It’s not until something like this happens, this devastating, that the marginalized group is taken into consideration.” Such an admission indicates the belief that Rafael held regarding the position of people with visual impairments as a marginalized group.

Mateo expressed the hope that through the recovery process the low rate of employment of people with visual impairments would improve:

I really hope that we will learn from our experience … This situation has also frustrated a lot of blind persons that I know because you have a situation that all of our day-by-day has been impacted. We’re still recovering, and blind persons are at a disadvantage. If it is hard for any person to get a job, just imagine for a blind person.

Although Mateo conveyed frustration with employment possibilities for people with visual impairments, especially in light of the additional economic challenges produced from Hurricane Maria, he does express hope. He hopes that society in general continues to change to the point of easing the employment burden on people with visual impairments.

Mateo also offered some specific ideas of accessibility for response organizations to utilize as they consider meeting the needs of people with visual impairments:

I really hope that these [response] agencies take into consideration our blind population here. For example, specific preparations of how do you prepare for an event in braille, in large screen, in audio, in alternative formats. I’ve never seen any of that information in alternative formats.

One of Mateo’s chief concerns for people with visual impairments was that of information accessibility. He was saying that there were no alternative formats of how to handle natural hazards.

Lessening abandonment

Organizations have made efforts to improve the inclusion of people with visual impairments through the recovery process. The representative of FEMA described how their Community Advisory Groups (CAG) helped after Hurricane Maria to develop more inclusive practices of people with disabilities in the recovery phase and that these groups were expected to continue developing. Additionally, the CAGs collaborated with the Puerto Rico Disability Community Relief Network (PRDCRN) which resulted in expanding the possibilities of the Network to better meet the needs of people with disabilities in the aftermath of Hurricane Maria. FEMA’s CAGs include individuals and organizations who serve people with disabilities. Also, FEMA’s collaboration with the PRDCRN was a way to include organizations who serve people with disabilities, some of which have leadership members with disabilities. The ADA technical specialist mentioned that progress had been made post-Hurricane Maria in regard to the participation of people with disabilities in future disaster events thanks to FEMA’s efforts.

The representative of a university disability office explained efforts that they made so that students with visual impairments would be better accommodated as students returned to campus during recovery. He successfully made university administrators aware that students with disabilities would have added difficulties in traveling back to campus.

Discussion

Two of the major themes of this case study was that of independence for people with visual impairments and the feeling of abandonment by this population throughout the 2017 hurricane season. The two themes will be separately considered below and then there will be a discussion on the influences on each other.

Influence of independence

It was shown that skills in independence for people with visual impairments was a key factor in the handling of a hurricane, such as discussed in Duyan and Karatas (2005) and Good, Phibbs, and Williamson (2016). Individuals with visual impairments who had little-to-no training in independence skills wished that they had the training previous to the hurricane as it would have helped them navigate the response and recovery phases. Those individuals with visual impairments who had extensive training in independence skills prior to Hurricane Irma explained that they utilized those skills throughout the hurricane season, and it was an aid to their physical and mental wellbeing. Some of the ways that skills in independence were aids included giving people with visual impairments some tools to provide for the post-hurricane needs for their local community and for themselves. Furthermore, representatives of OSPVIs noted the differences in wellbeing between their clients who had received a relatively high amount of training in independence skills versus those individuals who received minimal training.

Social connectedness was another important factor in wellbeing during the hurricane response and recovery phases. Skills in independence related to social connectedness in that it allowed increased tools for the individual to be physically present with others. Physically being with other people for social purposes was the only possibility after Hurricanes Irma and Maria as outlets such as social media were eliminated due to the extended failure of the electrical power system. Connecting with others socially was a benefit to the mental wellbeing of hurricane survivors with visual impairments, which contributed to confidence throughout their lives, part of which involves skills in independence (Heller, Swindle, and Dusenbury 1986).

Findings related to abandonment

Abandonment by institutions and informal social systems impacted independence as it created less opportunities for people with visual impairments to pursue formal training in skills in independence, as is also described in Welsh (2010). Abandonment occurred through social stigmas such as showing pity toward a person with a visual impairment when in public. Additionally, the present study found that people with visual impairments did not have equitable access to information related to the hurricanes before, during, and after the event, such as was also found by Stough and Ilan (2018). People with visual impairments expressed that they were perceived as a low priority by emergency-related institutions. Giving higher priority to this population may mean including them more in how emergency-related frameworks are created and sustained (Stough and Ilan 2018).

Abandonment shows up as a theme across disabilities during other societally pervasive disaster events, such as in the COVID-19 pandemic. A common saying among the general public during the pandemic is, “We are in this together.” However, such sentiments are often given from an ableist perspective as evidenced in, for example, physical distancing measures given by governments, yet the inability for some people with disabilities to abide by these procedures (Goggin and Ellis 2020; Kuper et al. 2020). Rather, a sense of abandonment, much as has been discussed in this study, has been expressed by people with disabilities during the pandemic (Senjam 2020; Jumreornvong et al. 2020).

Influence of independence and abandonment on each other

Although the notions of independence and abandonment are contrary, they are related. The desire of people with visual impairments for more independence is partly due to the lack of priority (or abandonment) that has been given by formal and informal social systems. Additionally, the more skills in independence that this population has, the greater the acquisition of social capital and therefore will experience less abandonment, as is argued by Sen (1999).

The relation of independence and abandonment may be illustrated in the following way. If a person with a visual impairment has many skills in independence, they often rely less on social supports. If those supports are lacking, that deficit will feel less like abandonment by that individual. Furthermore, if a person with a visual impairment has minimal skills in independence, the reliance on social supports will often be higher. If those supports are lacking, there will be an increase in the sense of abandonment (Welsh 2010). However, abandonment can be felt in other cases regardless of level of independence. For example, if emergency-shelter information is not provided in braille, a sense of abandonment may be felt by an individual with a visual impairment regardless of their skills in independence (Wisner et al. 2003). It cannot be surmised what a person who did not feel abandoned would be in this study as that was not a direct interview question, nor was a lack of abandonment apparent in any interview.

Limitations

Emigration from Puerto Rico was a hallmark issue of the 2017 hurricane season. In the present study, however, no one with a visual impairment who emigrated because of Hurricane Maria was interviewed, so this perspective was not present. Although many interviewees experienced difficulty from Hurricane Maria, no one had a relatively large loss, such as the complete loss of a home or a member of the household. Additionally, no one in the present study had to stay in a shelter. As a result, shelter experiences were not a factor in the present study.

Since the researcher was snowballing from adult rehabilitation agencies and only accepting interviewees who were 18 years of age or older, this decreased the chance of attracting participants who were born with a visual impairment. This is because, typically, a large percentage of clients that adult rehabilitation agencies serve are people who acquired their visual impairment as an adult (Welsh and Tuttle 1997). Therefore, people who were born with a visual impairment were underrepresented. Furthermore, the perspective of children with visual impairments and their families were not included. Also, snowballing from a rehabilitation agency meant that all participants with visual impairments had some exposure to formal training in skills in independence. Based on investigator observations, no participants lived in a relatively low-income scenario. More representation of government agencies was desired in the present study but was not possible due to temporary heightened security risks as a result of a separate mismanaged research study.

Conclusion

In conclusion, using the 2017 hurricane season as a case study, interviews from multiple perspectives show that there is a desire for, yet lack of, training in Puerto Rico to adequately address independence skills for people with visual impairments. The findings of this study show that when formal and informal social systems better address independence training, whether related to a large-scale emergency or not, at least two things will happen: empowerment of people with visual impairments will increase and a sense of abandonment will be lessened. Visual impairment is not unique compared with other disabilities regarding social vulnerability in disasters. All people with disabilities commonly experience reduced access to disaster resources (Kent and Ellis 2015; Smith and Notaro 2015). Therefore, the conclusions in this article regarding the importance of independence and a sense of abandonment may be extended to other disabilities. The specific skills in independence and the ways that abandonment are felt will vary among the variety of populations with disabilities. Access to information about natural hazards, whether visual, audio, or through social connections are compromised in general for people with disabilities (Peek and Stough 2010). Additionally, access to training in skills in independence for all people with disabilities, skills which aid mental health in the experience of a natural disaster, is limited worldwide (United Nations 2006). The experience of the COVID-19 pandemic is showing similar tensions between abandonment and independence such as was found in this study (Jumreornvong et al. 2020). The long-term nature of the pandemic offers real-time urgent disaster-related opportunities for governments, organizations, and individuals to make course corrections to lessen abandonment of people with disabilities and to better address the provision of skills in independence in an inclusive way. To illustrate, one of the findings of this study was the importance of independence and the resultant ability to physically be with other people to help each other emotionally and/or physically. However, although the COVID-19 pandemic has prevented physical closeness for many, it does not mean there should be an abandonment of skills in independence for all people with disabilities due to the value it adds to mental health.

Disclosure statement

No potential conflict of interest was reported by the author.