Wiki yangu na Kenya

My week spent in Kenya was amazing and profound, yet I find myself at a loss for words when trying to describe my time there.” I have been told that I am not a good storyteller. Details of the stories I tell that seem crucial to me turn out to be utterly unimportant to others, often causing them to lose interest and miss the significance of my experiences. Upon my return from a week-long study abroad trip to Kenya, I was asked all the predictable questions that one receives after a travel excursion: What did you do? How was it? Did you love it? Will you return? Can you tell me more about your trip? These are the questions that I cannot answer…how do I summarize a week’s worth of moments into interesting, well-constructed narratives that completely capture the beauty and wealth of knowledge I learned while away?

The truth is I can’t, so I don’t,  leaving both me and my friends unsatisfied. So when my professor who led the trip to Kenya reminded us of our living dictionary assignment, my plan began to take form. The Living Dictionary assignment was to select words in Swahili and translate them to English and turn in that list of words we had collected while there. Nelson, who started the camp and worked tirelessly to coordinate our trip and helped me translate the words for my Living Dictionary. This is not a commonly used phrase – in the United States or otherwise, so it took Nelson a minute to compose it. My mind starting whirling as to how I could take the assignment and make it into an art project. I realized that each day of my trip could be summarized into two Swahili words, and those words could tell the stories of my trip, along with accompanying the artwork.

While I was in Kenya, I chose nine words and phrases to tell the stories of my experience. Then I created images to accompany the words using different art mediums. These phrases and words were translated for me by the people I met while I was in Kenya. I found it liberating to express my experiences through creativity, and then use those art pieces to tell a story of my time abroad. Organizing my thoughts through the words and pictures ordered the information I shared. Reflecting on my week in Kenya, I knew there was some core knowledge I had observed while there that left an impact on me, I wanted to leave an impact with this art.

Kamuzu ambayo ni hai “Living Dictionary”

The watercolor is inspired specifically by an image from the safari we took; however, it also represents the vibrancy of color in the Kenyan landscape. We spent a majority of our time in Kenya out in the Maasai Mara, which is about four hours from Nairobi. There we stayed at Oldarpoi Camp, a sustainable tourism camp run by the community for the community. On the safari, I saw animals in their environment and on their own terms. The land and animals there are demonstrating an authentic ecosystem, something I have never seen firsthand before. My lion and elephant viewing could be confined to the zoo, but the safari was the antithesis of the zoo. There were no glass windows separating the animals from the observer, nor regularly scheduled feeding times. It was as if I stepped into a city where the skyscrapers were trees and sidewalks were flowers and bushes. Like any great city my presence did not interrupt its typical course, nor will my individual presence ever be remembered by the occupants. The natural beauty of this place never failed to leave an impression on me.

Moja & Billie (Mbili) “One” & “Two”

The image I chose to depict these words was inspired by all of the nights I spent looking out from the window above my bed. I could always see the milky way, and it was an unreal, magical sight that I have never been able to appreciate while in the States. Looking up at the universe I saw light and contrast that I cannot name or begin to understand. I could not tell you why stars burn in the night or the difference between celestial planets, but that does not mean I cannot appreciate it. I ended each day in Kenya grateful and full of love for all that I had seen and learned, even if I had not yet begun to process it. Like this trip, those evenings staring at the expanse was a singular experience The highlight of my evening was when I picked out Orion’s belt, a constellation made of three stars. It was so clear and easy to pick out that I wanted to add it into this piece.

On our first day in Kenya, as we were driving out to the Mara, we stopped on the side of the road at a shop. There, I met Joseph, who taught me how to count in Swahili. This is the first of many instances where my English ears did not hear or understand the nuances of the language. Two in Swahili is spelled “mbili,” but to my ears, it always sounded like “billie.” Language was an important tool to use when making a connection with others in Kenya. I often did not speak the same language as them, but something I have found to be true everywhere, in the United States and Kenya, was that others are eager to teach. Never once did I ask how to say or spell something in Swahili and the response was “No.” Each time, the person gleefully and patiently waited with me as I stumbled over sounds trying to repeat what they were teaching me. Not only did I learn Swahili words from this, but I learned the power of teaching and how it provides connection and bonds with humans.

Sawa Sawa & Twende “Ok? Ok!” & “Let’s go!”

During our trip, Sam and Joel not only drove us all over the country but also became our friends and guides. They fearlessly leading us all over the Mara through a safari. They knew so much about the creatures we were seeing. They knew where they would spend time and were able to find the best spots for viewing. Whenever we would stop to look at an animal, Sam would ask us, “Ok?” and we would all respond “Ok!” letting him know we were ready to move on. Sam was an expert driver and wild animal spotter as we witnessed many animals such as lions, giraffes, zebras, and warthogs in their natural habitat.

Much of the way people make money is through tourism, and often the safaris and the promise of animals is what brings the tourists. In order to see the animals up close, it is vital that you respect and understand their patterns and habits.

Sopa & Asanti (Asante)“Hi” “Hey” Hello” & “Thank you”

A majority of people that I met while in Kenya were able to speak three languages: English, Swahili, and their local dialect. We were staying in the Maasai lands where they speak Maa, which is that region’s local language. A common greeting for them is “Sopa” or hello. When we first arrived at the Oldarpoi camp, we were greeted by the people sharing their culture and traditions with us. They always warmly welcomed us with a friendly “Sopa”. When beginning to learn a new language it seems that some of the first phrases you pick up are how to welcome and how to be grateful. This made “Thank you” a vital phrase, and gratitude a universal concept, which is one of the most insightful realizations I had while in Kenya. I might not speak the same language as them, or fully understand their culture, but there are mutual understandings of humanity that persist across cultural boundaries. The sound of children laughing and playing is the same in any country. Friends teaching each other popular dances is the same in any country. Being grateful for life and connection is the same in any country. Asanti, or Asante as it is correctly spelled, was given freely and frequently during our time there. How could it not be? We had so much to be grateful for.

We we ni rafike yangu & Nakupenda“You are my friend” & “I love you”

On the first afternoon of our arrival in the Maasai Mara, we asked the warriors if they could show us around the camp. There was a village below where we stayed and as we were walking down the road the children were arriving home from school. We stopped and began to talk to these bright and inquisitive children. They drew their names in the dirt, as well as an outline of Kenya with a star where they lived. They wrote out long division problems with a stick to test my “college education”. The children giggled as they posed for photos and excitedly crowded the cameras. They opened their home, their lands, and their hearts to us without hesitation.

It was important to me that there was not a white savior mentality on this trip. I personally think that not only is the idea or concept of entering a foreign country and being a “savior” detrimental to the community, but also spreads this harmful to other Westerners considering trips to Africa. Dr. Stacy Moak and Dr. Tina Reuter, the professors who led this trip, ensured that we worked collaboratively with those in the community to provide them with the resources they needed. Change in a community does not come from a group of students visiting for one week. Members of the community are the true agents for change, and to have an opportunity to learn from them is an unforgettable experience. In many depictions of non-Western countries, the people are displayed in images of despair and poverty. This fuels the white savior complex but placing pity on these countries and the utmost need for a Westernized hero. Is there despair and poverty in Kenya? Yes. Is there despair and poverty in the United States? Yes. Regardless of where we are, considering what the photos you take and share are actually depicting is a measurable action you can take. Does the photo reflect the strength of the person? Does it treat humans in the photo as entertainment only? When someone is wanting to use imagery to advocate and empower for change, is the photo reflecting the true nature of its subject, or whatever sensationalized image will get the most emotional response?

I can’t speak to all the plights of the Kenyan people, nor can I summarize everyone who lives there within a week of being there; all I know is what I observed from my week-long trip: The people I met in Kenya are smart. They are curious. They are happy. They are resilient. Maybe if others had more opportunity to engage with non-Western worlds in an accurate and authentic way some of the negative mentalities and complexes surrounding how we view the rest of the world would begin to be transformed. I was fortunate to get physical proximity to the people of Kenya and the characteristics they exhibit, and hopefully, the visuals I shared will begin to give others a sort of pseudo-proximity to the humanity in all.

The Evolution of How I Defined a Global Citizen

Maasai warriors
Maasai warriors. Photo by Emma Laurence.

As the world has grown smaller, and the global economy and policies have pushed their way to the focus of peoples concerns, many citizens have altered their attention from the nation to the globe, defining themselves to be a global citizen. Since the introduction of social media, I have seen how easy it is to know what is happening around the world. With easy access to international information, I have seen more of my own generation focus on what they can do to help people on the international stage. Specifically, when my friends and I began deciding what we wanted to study as undergraduates, we were not focused solely on what we wanted to do but also how we could use our major to help others around the world. We would consider ourselves to be global citizens. What does it mean to be a global citizen?

Over spring break 2019, I traveled with the UAB Social Work Department along with Dr. Stacy Moak and Dr. Tina Kempin Reuter to Kenya. While we were there to work on projects that centered around a multitude of social work topics, I learned what it means to be a global citizen and how my definition of that changed throughout the trip. Before leaving for Kenya, I considered myself a global citizen, but I was not certain about what it meant to be one. From my experience in traveling, I defined a global citizen to be someone who understood that there were cultures and communities outside their own community that should be appreciated.

Before the class began, my knowledge of African culture was limited to what I saw in movies like the Lion King and Black Panther. During the class we prepared for our trip by creating lessons on our projects, expanding our knowledge about Kenyan culture, and preparing supplies to take to the groups we were meeting in Kenya. This knowledge helped me establish a basis of understanding for the communities we would be visiting. As part of our class, we read My Maasai Life: From Suburbia to Savannah by Robin Wiszowaty which educated me on many Swahili and Maa words as well as specific cultural details within the Maasai Mara. We also had a lesson on human rights and what should be available to all humans. This lesson opened my eyes to a part of global citizenship that I had not thought of because of my little education on human rights. To help communities around the globe, I must know what’s going on in international and national legislation to know where those human rights are being violated or taken away. This knowledge grants the ability and responsibility to work towards a better world where everyone has their basic rights as a human.

Emma and the Maasai women sitting in a circle having conversation
Photo by Emma Laurence

Before this trip, I had believed that this understanding would be enough to establish an appreciation for the community of the Maasai Mara. While I did appreciate the culture, I soon realized that fully experiencing a community is far more important than learning from documentaries and online sources. The experience that creates a deep connection towards communities of the world is one that is achievable when you focus on the people around you. Throughout our time in the Maasai Mara, my definition for a global citizen was redefined. From getting to go inside a Maasai community to doing beadwork with some of the hardworking Maasai mothers, I began to create relationships within the community, some even without a common language to speak.

One afternoon the students and professors sat down with the Maasai women to learn how to make soap and do beadwork, we had learned that these women used these skills to make money for their families. The woman who was tasked with trying to teach me how to do the beadwork was very patient and kind, and we didn’t even speak more than a few words to each other. I know little to no Swahili or Maa, and the woman knew no English. We were able to find a way to establish a friendship through unspoken communication, involving a lot of laughter at my inability to put beads on a string. It seemed impossible before I came to Kenya to establish a friendship with someone who came from a vastly different culture and background from mine especially if there is no common language spoken. I quickly from the trip that not only can you form relationships with people from all walks of life, but they are necessary to understand and fully appreciate the communities you visit when traveling.

While at Cara, a women’s rescue facility outside of Nairobi, I learned more about the role that I play in communities around the world. As we sat around a table where students were discussing social work practices with the counselors at Cara, I saw how the exchange between communities is important as well. We learned that the women at Cara, had the experience to help the young ladies in their facility but they needed supplies, as well as some specific lessons, plans that they hoped we could develop later for them as a future project. This exchange taught me that first, to help a community, you must be told what they need from the community itself, you cannot interpret this yourself. As an outsider in a community, I would never know what people need; therefore, by being told by the community, our group was able to help with the specific needs of the community. Second, as a global citizen, my role is not to go into communities and change them to look more like mine. My community is not always right. Therefore, you must communicate and exchange information to meet the community where they are at. Thus, I redefined a global citizen to be someone who sought out friendships so that they could enhance their love for a community and exchange knowledge to put in place future projects that would aid members of the community.

a group photo of the team from UAB
Photo by Emma Laurence

Once I returned from Kenya and quickly fell into my daily routine as a student, I found that a few more things about how I was defining a global citizen changed. The definition is not simple or short because to be a citizen of the globe involves a lot of thought and appreciate as well as work. As a global citizen, it is important to create relationships in a community to see the community as your own because as a global citizen your community is the globe. This leads to the service aspect of a global citizen. Because these communities are part of your community, you must work to help those communities where they need it, if that need is established from the community itself, while working to preserve the beauty of the culture within the area. It is your responsibility to make sure the people in your global community have the rights they deserve as a human. Therefore, you must say up to date on current events surrounding legislation around the globe especially when that legislation infringes on human rights.

While I was only able to spend a week working on the projects, my trip will be able to impact how I see myself in the world for years to come. I know now what my job is as a global citizen and how I can do that job to the best of my ability. I hope soon more people will see their role as a global citizen so we can move towards furthering knowledge for the different cultures around the globe, access to human rights for all, the exchange between communities, and international friendships.

Dr. Robert Bullard: Health Equity through Environmental, Economic and Racial Justice

a photo of Robert Bullard speaking to a crowd
Dr. Robert Bullard. Photo by UAB IHR.

Dr. Robert Bullard has been fighting alongside the citizens of various cities for their right to a clean environment. He positions himself as a dot-connector who utilizes the central theme of fairness, justice, and equity. He is a seeker of just equity. His fight began with the demand of his wife, Linda, in 1979 after she filed a lawsuit against the state of Texas and BFI, a national company seeking to dump waste in a Black community. Bean vs Southwestern Waste Management Corp. was the first lawsuit to challenge the notion of environmental justice using civil rights law. Bean found that while Blacks made up 25% of the population of Houston during the years prior to 1978, the communities in which they resided became the ‘new residences’ of 82% of the city’s waste. Environmental justice (EJ) reveals the disparate impact of the embedded disrespect White supremacy has for marginalized communities, specifically poor communities of color in the South. It exposes the interdependent relationship among pollution, corruption, and racism. oil containing PCBs dumping travesty in Warren County, North Carolina in 1982, initiated the launch of EJ on the national level. Young Black activists put their lives on the line in protests. In 1983 a study found that 75% of waste sites were in Black communities in seven (7) of eight (8) Southern states. Bullard advocates for community-based participatory research projects.

Using a variety of maps and graphs, Bullard located the roots of environmental injustice to the division of the country during enslavement. The data shows that racism can make people sick. “Your zip code is the most powerful predictor of health and well-being.” A 1994 Clinton executive order reinforced Title IX of the Civil Rights Act and by 1999, the Institute of Medicine found that persons of color were more impacted by pollution and contract more diseases than affluent White communities. The highest concentration of environmental injustices occurs in Southern Black communities, including North Birmingham and Emelle, Alabama. Emelle houses the largest chemical waste management site in the nation. This site receives waste from the lower 48 states and 12 international countries; however, this tiny town is in the heart of the Black Belt, 95% Black, and in a county that borders the AL/MS state line.

EJ is not simply about the release of pollutants into the atmosphere. It is also about the lack of accessibility in neighborhoods and the decreasing proximal distance between vehicles and pedestrians. Health connects to everything. We must redefine the environment, our understanding of it, and our relationship to it. Bullard argues that the environment, though it should be neutral and equally accessible for all, is not when the entitlement of equal protection is not applicable to some members of society. Health equity brings together all the segments which merge into intersections. EJ advocates and activists must call out the normalization of whitewashing in both the history and the present injustices plaguing marginalized communities. We need more equal partnership—with universities and communities, and among the marginalized. Marginalized communities must have a reclamation of space—free from the influence and presence of Whites—for the unshackling of all the ‘isms’ from their narratives to unify their voices and their messages. Whites must make room for, stand aside, and equally distribute finances and resources when confronted with the reality of EJ like Flint and the southern Black Belt. The erasure of history makes people ignorant but the failure to invite and listen to the voices of those most affected by EJ continues the perpetuation of the injustices.

Bullard concludes that justice has not been served in places like Flint because not only does the issue remain, the families are still poisoned, and the government officials have not received justice. For 40 years, Bullard has steadfastly shown that a commitment to EJ specifically, and justice broadly, is lifelong and intergenerational. It also requires an alliance with Whites longing to learn and build relationships. The process of mutual learning, regardless of race or age, must be met with clear expectations and a desire to focus on that which may seem ‘unsexy and unattractive’ because that is where the real need for attention lies. Community health is not just about the treatment of the sick; it is the exacting of liberty and justice for all.

Symone Sanders: Becoming a Radical Revolutionary

On Wednesday, March 20th, the Institute for Human Rights co-sponsored the UAB Lecture Series alongside Undergraduate Student Government, Graduate Student Government, Student Involvement & Leadership, and Leadership and Service Council to present political strategist and commentator Symone Sanders.

Sanders began by critiquing the cliché of how one would change the world if they had a magic wand. However, in this world, she insisted we’ll never have that opportunity because social change doesn’t operate through a blank slate. As a result, we must work with a system that doesn’t want to change which warrants radical revolutionary leadership in the spirit of community.

This evoked Sanders to propose her tenants for being a radical revolutionary:

  • First, you must be willing to buck the status quo and take a risk.
  • Second, you must be willing to feel uncomfortable and act.
  • Third, you must be willing to stand in the gap for other people.
  • Fourth, you must be willing to take on your adversaries as well as your allies.
  • Finally, you must pick an issue and care about it.

Sanders admitted these tenants were inspired by Dr. Martin Luther King, Jr.’s commitment to social change by claiming that immediately after his assassination, many Americans blamed him for his own demise because they believed he was doing too much. In contrast, Dr. King’s current legacy of racial and economic justice is well-respected. Sanders insisted Dr. King was often very uncomfortable when addressing injustice across the country and implored the audience to be more like him when it comes to strategic community building, namely when it comes to intersectional and intergenerational coalitions. As for challenging your allies, Sanders admitted that she recently had to condemn the sexual assault allegations against her friend and Virginia Lt. Governor Justin Fairfax because truth is truth and much like Dr. King, “…silence is betrayal”. She claimed radical revolutionaries are vigilant about what’s happening to marginalized communities across the country and allow themselves to hope, dream, and have an outline for social change.

 

Symone Sanders speaking to the audience. Source: UAB Institute for Human Rights

 

Amid political and social turmoil nationwide, Sanders’ lecture about becoming a radical revolutionary is timely as well as necessary. By modeling this approach from Dr. King’s legacy, Sanders has drafted a pragmatic, although challenging, formula that has and will continue to confront injustices that have outstayed their welcome in U.S. culture. Sanders largely addressed the challenges of race and sex-based discrimination, not only in the political area but in her personal life, who as a Black woman must constantly confront intersectioning prejudices that attempt, but fail, to undermine her Black womanhood.

Sanders said to the crowd, which was predominantly UAB students, there is no one more powerful in the world than young people in U.S. and that we must be willing to do things that have never been done before. This claim is particularly salient to a group of people that were likely ineligible to vote in the most recent U.S. presidential election. For this reason, these young, aspiring minds are capable of taking this narrative to their families, friends, classmates, and the voting polls which can embolden the revolutionary change our society needs and deserves.

Disability Rights, Identities, and Narratives

Photo: By NC 2.0/USAID U.S

Disability rights is an increasingly important issue in our society. According to the U.S. Census Bureau, one in four people in this country have a disability. With such a large segment of our population facing a type of disability, it is crucial for the expansion and protection of disability rights. One way in which support for people with disabilities (PwD) can be increased is through the sharing of personal narratives of the experiences and lives of individuals with a disability. Narratives help to educate the public and prevent unintentional bias or stereotypes from causing harm to this community. Giving an individual with a disability an opportunity to open up and share their stories will help empower many of our friends, families, and neighbors and show that every single member of society matters and is appreciated.

Personal narratives are a great way to bridge the gap and inform the general population about disability issues. Oftentimes what people know about disabilities stems from limited education in schools or medical commercials. These outlets tend to focus on statistics and don’t address the issue on a personal level because most of the times they are not consulting an individual with a disability. Even though one in 4 people in this country have a disability, people lack a personal connection that allows them to fully understand the discrimination and ignorance that a person with a disability faces. In fact, it is common for individuals with a disability to have stories where people have stared at them, gawked at them, pointed at them, laughed at them, or even flat out harassed them in public. In all of these cases, PwD are not treated like normal people and are often made to feel ostracized. This disconnect needs to change and this mistreatment of people with disabilities needs to end. If people hear these stories from the viewpoint of a disabled person, then a personal connection is far easier to establish.

A personal connection between both communities is crucial. Empathy and understanding are needed to end fear and uncomfortable feelings when engaging with people with disabilities. It is important for people to realize that disabilities aren’t diseases you can catch. In fact, PwD pose no risk whatsoever to those around them. Listening to PwD talk about their conditions, lives, and how they overcome their disabilities to live a fulfilling life dispels all rumors and falsehoods about disabilities. Stereotypes and prejudice disappear when people see that disabled people are just like them and that disabilities do not define an individual. Each PwD has their own unique identity that is not affected by their disability.

To combat the lack of understanding, misinformation, and stereotypes about PwD and diminish the gap that exists between both communities. It is important to create a safe place for this community. A safe place is an environment where PwD feel comfortable enough to express themselves and share their stories without any fear of judgment or repercussions. Such an environment would make them feel normal and not different from the people around them. It is high time that disabilities were normalized and that PwD are given the same treatment as anyone else. Creating a PwD inclusive space allows the PwD community to strengthen. The benefit of this is that it lets PwD not only advocate for themselves but also to advocate for other people in their community so they might not have to go through the same prejudices.

To create this safe place for PwD it is imperative to promote representation and educate people about individuals with disabilities so that disabilities are normalized in the public eye. Increasing the population’s amount of interaction with PwD is not difficult and is much needed. The earlier this takes place, the better. If society’s youth is brought up surrounded by their peers with disabilities, it would allow both communities to learn a lot from each other. Teaching younger generations how to interact with PwD is a good place to start. Treating these lessons like any other instance where you would educate a younger person about manners and social cues can prevent a lot of uncomfortable situations for people with disabilities. It can also prevent harmful biases from growing in a young child’s mind since their exposure and prior knowledge makes them understand that individuals with disabilities are humans too.

Often times, disability policies have typically been developed for people with disabilities without their direct participation. An element to creating a better environment for people with disabilities is to ensure that they are active in all sectors of the economy. It is a great thing that most public areas are now required to be accessible to PwD. The use of ramps, elevators, sloping curbs, lifts for public transportation, and other methods are required by law to ensure that PwD can navigate through their everyday lives regardless of movement impairments. However, even though these fixtures for creating a more accessible space is mandated by the law, there are many instances where there is only one wheelchair accessible table at a restaurant, or a ramp inconveniently located at the backside of an establishment.  It is not only about making space accessible, it is also about how conveniently these resources are accessible to PwD. The reason that disability friendly spaces are sometimes difficult to come by is that people with disabilities are often not the ones designing these spaces. However, having a person with a disability as someone in charge or as a consultant for these issues can help the ball get rolling. So far society has expected people with disabilities to modify themselves to fit in, but having society bend the rules to accommodate people with disabilities can be beneficial to the growth of this community. Therefore, having people with disabilities in charge and active in leadership roles can spearhead this campaign.

Representation is incredibly important for people with disabilities. The marginalization and ostracism of people with disabilities severely hinder their representation in media and pop culture. People with disabilities are the largest minority group in the United States. Yet, the 2017-2018 GLAAD report (report that analyzes diversity in television) found that only 1.8% of characters have a disability making them the least represented minority group in the TV industry. Representation shows the disabled community that they are welcome and belong just as much as any other community.  Representation is not only about quantity, but also about being represented accurately without perpetuating any negative stereotypes. More often than not, people with disabilities are depicted in TV shows and movies as these characters that are trying to overcome their disability. It would be more appropriate to show these characters embracing themselves and having a purpose bigger than overcoming their disability. This supports the argument for having more individuals with disabilities as writers, directors, producers, or media consultants. When someone without a disability creates media from the perspective of an individual with a disability, they struggle to paint a truthful picture. This may cause someone without a disability to make assumptions and maintain stereotypes. Having better quality and quantity of disability representation will expose the population to more realistic experiences of individuals with disabilities. This can help generate truthful interchange between communities.

A simple change in the public’s perception of disabled individuals would go a long way in accomplishing the goal of increasing rights and opportunities for PwD. If people can see past the disabilities and focus on the person, then most of the discrimination, awkward moments, and harmful stereotypes facing the disabled community can be resolved. Both communities advocating for change will allow greater access and accommodations for disabled individuals to pursue higher education, enter the workforce, and engage in public events and venues. People need to learn how to respect the rights of these individuals and help them when needed. It is essential to campaign and use powerful narratives to enact greater protections and rights to this community of people. Effectively normalizing disability by tackling these issues head-on can lead to widespread positive changes.

 

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Disability Rights, Employment, and Housing in a Cross-Cultural Perspective

three men unpacking soda for distribution
“Men at Work” by Andreas Wulff, Creative Commons

The ability to be rewarded for making meaningful contributions to society and to choose our own private residence are two facets of life many of us often take for granted.  However, many individuals with a form of disability often encounter barriers during their journey locating work and housing.  These barriers can arise from social isolation, discriminatory and / or inadequate governmental policies, economic hardship, or simply a lack of awareness of resources designed to aid persons with disabilities to find employment and housing.  These material and immaterial barriers fall under the broad umbrella of ableism, defined here as “the intentional or unintentional discrimination or oppression of individuals with disabilities”.  The following post explores four case studies surrounding the themes of housing and employment and how various cultures have either failed to address these needs or offered innovative solutions to persons with disabilities.  Finally, for the purpose of this blog, disability is defined, in accordance with the Washington Group (2018), as “problems, such as impairment, activity limitation or participation restrictions that include the negative aspects of functioning” in the following six domains: (a) walking; (b) seeing; (c) hearing; (d) cognition; (e) self-care; and (f) communication.  This blog post offers an anthropologically-informed context for to upcoming panel ‘Disability Rights, Employment, and Housing in a Cross-Cultural Perspective’ at the Institute for Human Right’s Symposium on Disability Rights.

Disability Rights & Employment: South Africa

South Africa’s government of apartheid came to power in 1948 and institutionalized a cultural and political zeitgeist of xenophobia, discrimination, and violence towards the Other.  Throughout apartheid’s hold on South Africa, systems of cultural and structural violence were erected both within social life and in bureaucratic policy.  Apartheid is most infamous for its impact on racially-motivated violence; however, other forms of discrimination were enabled by apartheid policy and philosophy as well.  Engelbrecht (2006) notes that education systems institutionalized apartheid policies in curricula development and inclusivity within schools.  This specifically barred children with disabilities from actively participating in the education system, from primary through tertiary levels.  Englebrecht (2006) contends children with disabilities were actively excluded from South African governmentally-controlled education systems.  This means children with disabilities during the apartheid regime did not receive adequate preparation for entering into the workforce, thus placing these individuals at a low ‘tract’ and preventing them from seeking or acquiring meaningful employment.  Englebrecht (2006) emphasizes that discriminatory and / or prejudicial national policies focused on one marginalized population (e.g. apartheid) often seep into the experiences of other marginalized populations as well.  In short, government-sanctioned racist policies immobilized the disability community.  To repress one group is to repress all groups.

The South African Human Rights Commission (SAHRC) was inaugurated in October of 1995, as mandated by the South African Constitution’s Human Rights Commission of 1994.  The SAHRC is charged with monitoring, preventing violations of, and educating the public about human rights within the South African context.  A specific function of the SAHRC is to examine how apartheid-era policies impacted South African civil society and how to eliminate the vestiges of structural violence still propagated by the former apartheid regime.  The SAHRC provides further evidence supporting Engelbrecht’s (2006) theory that the repression of children with disabilities would negatively impact South African workforce.  The SAHRC (2017) summarizes trends of disability employment, demonstrating that workforce equity (equally considering and making efforts to hire marginalized populations, such as the disability community) is nowhere near the South African Department of Labor’s goal of 7% by the year 2030.  In 2017, workplace equity was still under 2%, with 8 in 10 persons with disabilities unable to find employment (SAHRC, 2017).  A variety of reasons are given for this abysmally low number, including: lack of reasonable accommodation, inequality and discrimination, and a persistent inability to obtain a quality education.  The ghost of apartheid, it seems, haunts the disability community within South Africa, preventing a vast majority of persons with disabilities from obtaining education, training, and gainful employment.

The Liffey River, Dublin, Ireland
“Dublin – The Big Snow of 2010 – Along the Liffey” by William Murphy, Creative Commons

Disability Rights & Employment: Ireland

In 2017, the British Conservative government announced plans to cut the Employment and Support Allowance for persons with disabilities who were deemed ‘capable of preparing to return to work’ by 30£ / week (~$40 / week).  The British government implemented this policy as a ‘motivational tool’ for persons with disabilities and as an austerity measure, despite the fact that previous disability allowances (akin to welfare or social security measures in the United States) left 1/3 of allowance recipients struggling to afford food.  However, the ministers of Ireland, taking cue from their outraged constituents, have chosen a different path to empower persons with disabilities to find employment.  Instead of the ‘pull yourself up by the bootstraps’ strategy of British Conservative MPs, Irish Minister for Social Protection Regina Doherty and Minister of State for People with Disabilities Finian McGrath have chosen to listen to persons with disabilities themselves to assess the best way to promote gainful employment within the disability community.  In response to a 2017 policy brief Make Work Pay, Doherty, McGrath, and other policy-makers are distributing questionnaires to adults with disabilities and parents of young children with disabilities to assess the employment needs of the disability community (Clougherty, 2017).  This approach to governance, one defined by inclusivity and direct participation of the disability community, shows promise in exploring the complicated relationship between disability and employment.

Of particular importance in the employment-disability nexus is accounting for an individual’s preference for work and her or his form of disability.  The Irish ministers understand that low-functioning persons with disabilities will, for the entirety of their life, be simply unable to work.  These individuals require assistance from the government thereby ensuring these persons are included in society and are able to participate in decisions regarding their lives and livelihoods.  On the other hand, some individuals are temporarily disabled and do not require the same social security from governments.  By asking for input from persons with disabilities themselves, the Irish policy-makers are better equipped to make educated, inclusive, and effective policies and programs aimed at insuring equitable and equal employment within the disability community.

The Al-Saraya al-Hamra Fortress in Tripoli, Libya
“Al-Saraya al-Hamra Fortress, Tripoli” by David Stanley, Creative Commons

Disability Rights & Housing: Libya

The State of Libya, located at the Northern-most tip of Africa and bordered by the Mediterranean Sea, is in the midst of rebuilding civil society following the catastrophic Libyan Civil War of 2011.  For over forty years, Muammar Gaddafi ruled over Libya, attempting to introduce a socialist regime and command economy to the Libyan State.  During his reign, Gaddafi allegedly sought to implement a political philosophy of jamahiriya (جماهيرية‎), meaning “state of the masses” in Arabic – akin to ‘direct democracy’.  Through this system, Gaddafi created the national General People’s Congress, whose directives (including any form of a Libyan Constitution) could be superseded by the Basic People’s Congress, municipally-led executive and legislative bodies.  Hypothetically, this system placed most political power at the local level; however, Gaddafi’s actual dictatorial rule inverted the political equation.  In the past half century, this political system (again, on paper) aimed to enshrine the rights of persons with disabilities through the passage of the 1981 “Law on Disabled People”, arranging for “government provision of housing, home care, education, prosthetic limbs and rehabilitation for people with disability in Libya” (Hamed el-Sahly & Cusick, 2016, p. 12).  In political practice, Libyan persons with disabilities suffered major human rights violations, including lack of housing and home care, due to insufficient mechanisms of care and cultural taboos.

Although political and economic recovery may well be on the horizon for post-conflict Libya, cultural barriers prevent many Libyans with disabilities from securing independent and safe housing.  In a comparative study, many Libyans express unfavorable attitudes towards persons with disabilities along three dimensions: (1) lower ratings of willingness to empower the disability community; (2) higher ratings of exclusion; and (3) lower ratings of similarity between disabled and non-disabled people (Benomir, Nicholson & Beail, 2016).  Most pertinent to issues related to housing, Libyan participants scored high on the ‘need to shelter’ persons with disabilities – meaning intentionally secluding these individuals from broader society for fear of communal judgement and the social stigma attached to disability.  Furthermore, efforts to facilitate the transition from being ‘sheltered’ (living with a family member) to an autonomous home life is seen as a problem ‘for and by’ the disability community – i.e., it is the responsibility of the disability community alone to solve social issues related to their situation in life (Cusick & Hamed el-Sahly, 2018).  This demonstrates that governmental policies intending to enshrine disability rights are insufficient – societies themselves must be willing to tackle these issues head on.

A Hopi House
“Grand Canyon Hopi House 0073” by Grand Canyon National Park, Creative Commons

Disability Rights & Housing: Native Americans

Persons with disabilities with another form of marginalized identity (e.g. members of an indigenous group) are placed at a heightened risk for social isolation / exclusion, for physical and mental health concerns, and having disability-related needs go unmet (US Department of Health & Human Services, 2017).  Within American Indian / Alaska Native (AIAN) communities, this translates specifically into housing issues, as AIAN reservations already suffer from a lack of resources and infrastructural investment to provide for non-disabled AIAN individuals (US Department of Health & Human Services, 2017).  An estimated 21 – 69% of homes on reservations are overcrowded and have serious physical deficiencies compared with 5.9% of non-reservation US homes nationally (US National Council on Disability, 2003).  To address these intersecting concerns, the AIAN community, in tandem with the US government, have prepared and started implementing policy prescriptions to provide affordable, safe, and dignified housing to AIAN with disabilities.

Of primary concern in planning homes for persons with disabilities is utilizing principles of universal design – “guidelines for housing construction that would create a livable, marketable environment for everyone regardless of ability, age, or size” (US National Council on Disability, 2003, p. 94).  Currently, the American Indian Disability Technical Assistance Center provides assessments of universal design within reservations and makes design prescriptions if the home in question is not fully accessible.  Implementation of these prescriptions may fall to the American Indian Disability Legislation Project (AIDLP), a culturally-informed taskforce mandated to draft and pass legislation standardizing disability-related care (including autonomous and accessible housing) on Indian reservations (US Department of Health & Human Services, 2017).  The AIDLP, in addition to ensuring reservations adhere to the Americans with Disabilities Act, acts as a cultural liaison between the disability community and AIAN community to ensure disability concerns are handled in a culturally-appropriate manner.  Finally, the AIDLP and other AIAN-affiliated, disability-related advocacy groups ground their research and implementation efforts by tackling both material (e.g. physical accessibility) and immaterial (e.g. cultural stigma) barriers (US Department of Health & Human Services, 2017).

Towards a Global Culture of Disability Empowerment

The preceding case studies illustrate that disability rights, especially related to employment and housing, are high complicated issues.  Historical events, such as apartheid and civil war, interact with governmental policies, such as austerity measures and indigenous sovereignty.  Underlying each of these examples is the ‘culture’ surrounding disability – how peoples across the world value or stigmatize the experiences and perspectives of the disability community.  In some cases, such as South Africa, systems of discrimination have erected structural barriers holding back people with disabilities, even though disability-related stigma may have lost its potency.  In other cases, such as American Indian / Alaska Native communities, an additional marginalized identity may facilitate an even greater emphasis on seeking justice and equity for persons with disabilities.  As local, national, and global disability movements aim to eliminate social exclusion and promote equality in life and livelihood, the myriad cultures of disability must be unpacked and explained.  This post argues that moving towards a global cultural of disability empowerment is indeed possible.  Once this culture of empowerment has been adopted, disability-related concerns, such as employment and housing, will be addressed and rectified across the globe.

Keep up with the latest announcements related to the upcoming Symposium on Disability Rights by following the IHR on Facebook, Twitter, and Instagram.  And don’t forget to tag your Symposium-related posts with our event hashtag: #DisabilityRightsBHM

References

Benomis, A. M., Nicolson, R. I. & Beail, N. (2016). Attitudes towards people with intellectual disability in the UK and Libya: A cross-cultural comparison. Research in Developmental Disabilities, 2016, 1-9.

Clougherty, T. (2017). Make Work Pay: A New Agenda for Fairer Taxes. Cork, Ireland: Center for Policy Studies.

Cusick, A. & Hamed el-Sahly, R. M. (2018). People with disability are a medicalized minority: Findings of a scoping review. Scandinavian Journal of Disability Research, 20(1), 182-196.

Engelbrecht, P. (2006). The implementation of inclusive education in South Africa after ten years of democracy. European Journal of Psychology of Education, 21(3), 253-264.

Hamed el-Sahly, R. M. & Cusick, A. (2016). Rehabilitation services in Benghazi, Libya: An organizational case study. Middle East Journal of Family Medicine, 14(9), 11-18.

South African Human Rights Commission (2017). Research Brief of Disability and Equality in South Africa. Braamfontein, South Africa: South African Human Rights Commission.

US Department of Health & Human Services (2017). Emerging LTSS Issues in Indian Country: Disability and Housing. Spokane, WA: Kauffman & Associates, Incorporated.

US National Council on Disability (2003). Understanding Disabilities in American Indian & Alaska Native Communities. Washington, DC: National Council on Disability.

Washington Group (2018, December 4). Statement of rationale for the Washington Group general measure on disability. Retrieved from http://www.washingtongroup-disability.com/wp-content/uploads/2016/01/Rationale_WG_Short-1.pdf

Disability Rights, Health, and Medicine

Disability Symbols. Wikipedia, Creative Commons.

What is a disability?

“A disability is a condition of the body or mind that makes it more difficult for the individual to do certain activities and interact with the world around them.”

Approximately one in five adults in the United States has some type of disability. There are numerous types of disabilities that impact people’s daily lives through sight, movement, learning, or communication, although there are many others. Furthermore, even if two people have the same disability that doesn’t mean they are impacted the same way. Thus, individuals who have a disability do not consist of one general population, but instead a diverse population with various needs. Now the focus is more on how the word disability refers to the three components mentioned in the next paragraph and how there are numerous factors that go into having a disability.

The World Health Organization created the International Classification of Functioning, Disability, and Health (ICF). The ICF introduces the word disability into three main categories that are impairment, activity limitation, and participation restrictions. The term disability and impairment do not mean the same thing. Before the 1970s, the common view was that a disability is measured by whether or not an individual has an impairment or a health condition. In the 1970s there was the disability rights movement, which geared people away from this medical view. However, many people still focus on the more traditional, medical model of disability.

Disability and Health

Those with disabilities tend to face health care disparities such as less access to adequate care, both in terms of promoting health and preventing diseases. Some people even go as far as labeling those with disabilities as a medically underserved population. There has been some research on how people with disabilities usually have a lower quality of health and are more likely to experience secondary conditions. Some examples of the health disparities include not having interpreters during medical examinations, adults with developmental disabilities being at risk for secondary conditions such as obesity, seizures, and cardiovascular disease, and women who have disabilities are less likely to get Pap tests and mammograms. Furthermore, some other issues include misconceptions and stigmas surrounding the word disability, shortage of suitable training, lack of proper medical equipment and facilities, lack of accessibility, and little to no individualized accommodations.

Disability Rights. Flickr: Féin, Creative Commons.

The Stigma

While there are medical advances over the years in regards to individuals with disabilities, there is a stigma surrounding people with disabilities. They tend to be seen as individuals incapable of making decisions or helpless. There are implicit or even unconscious biases against individuals who have a disability. Furthermore, there are several articles on how the medical community treats those with disabilities as having less value than non-disabled people. The medical interpretation of a disability is viewed as a pathological disorder and so this perspective focuses on how one can treat or cure it, rather than a social problem. In contrast to the medical model, there is the social model of disability, which focuses on how disability is formed from a social situation or construct, rather than a person’s characteristics. This viewpoint focuses on dividing impairment from disability, rather than recognizing that one is a component of the other.

The National Council on Disability says, “people with disabilities comprise the largest and most important health care consumer group in the United States, yet the Institute of Medicine and others have warned that Federal agencies, policymakers, and health care systems have not yet responded to the broad-ranging implications, for individuals, and for society, of the demographic increase in disability as the population ages.”

Health Insurance

Another barrier is that people with disabilities tend to lack health insurance or adequate coverage for healthcare. The National Council on Disability conducted research and found that few health care training programs address disability issues in their curriculum and most federally funded health disparities research do not look at people with a disability as a disparity population. Furthermore, while Medicaid and Medicare cover some people with disabilities, these programs do not cover those who have private insurance. Private group plan insurances are usually given through employers; however, not all employers offer health insurance and not all people who have disabilities are working. Those who have private group plans through their employer are required to cover basic care for the average working population. Medical equipment such as wheelchairs, ventilators, and crutches are limited in terms of annual payments.

Individual plans charge higher premiums to individuals with disabilities. Persons with emotional disabilities consist of those most uninsured, closely followed by persons with visual or hearing disabilities.

The three key elements of health care insurance are availability, affordability, and coverage for critical benefits. Important benefits can include long-term care, mental health, and medications. There have been national surveys that found people with disabilities have a hard time figuring out the insurance system, visiting specialists, and obtaining medical equipment that is durable. Additionally, numerous essential health care services can be out of their budget, meaning that they go without certain things because they simply cannot afford it.

According to the Journal of Disability Policy Studies, “estimates suggest that these factors obstruct or delay care for as many as 30 – 50 percent of adults with disabilities.”

The Henry J Kaiser Family Foundation conducted a national survey that found, “health insurance is inadequate for more than one in three people with disabilities who reported delaying care, skipping medication, or going without needed equipment because of cost.”

Accessibility

Accessibility can be broken down into many different components. The two main sections to focus on are communication and physical access.

Physical barriers are objects that are either natural or manmade that hinder or block mobility or access. These barriers can include inadequate transportation, accessibility to the facility and offices, and lack of accessible exams. Something as simple as getting a mammogram exam can provide numerous difficulties because the mammogram machine cannot adjust for height or health professionals are not adequately trained for lifting assistance. Thus, some health professionals conduct exams while patients are in their wheelchairs, which can yield inaccurate results. Other physical barriers include parking at the medical facility, entering the building, and the bathroom facilities, making it more difficult for someone with a disability to receive proper care.

Proper communication and education are required to make a change. Individuals with disabilities should feel they can discuss their challenges without fearing discrimination, while, those in the healthcare field should appropriately discuss, support, and address the challenges people with disabilities face. Research shows there is a lack of awareness and inadequate instruction among health care providers. For example in Connecticut, “91% of primary care physicians said they had no training in intellectual and developmental disabilities.” Without proper training, people tend to make assumptions about people with disabilities and often times they are incorrect. Some stereotypes include thinking that those with developmental disabilities cannot feel pain so they do not need anesthesia, people who are deaf have problems with their cognitive functioning because they are not fluent in standard English, or women who have disabilities do not need reproductive care because they are assumed to be sexually inactive. Making assumptions is not only harmful to the health of the patient but also it undermines who they are as a person. This can lead to damaging the patient-provider trust and provoke people with disabilities to not even bother to seek care. Ultimately, having access to appropriate health care can prevent new health conditions and could possibly stop current health conditions to worsen. In order to be effective and efficient, health care must be inclusive and accessible.

 

Keep up with the latest announcements related to the upcoming Symposium on Disability Rights by following the IHR on Facebook, Twitter, and Instagram.

 

Accessibility and Education

 

Parking spot reserved for people with disabilities
Wheelchair Only. Source: JoshuaDavisPhotography, Creative Commons

For most people, the importance of the right to an education is not unknown.  It’s through education that people gain the skills that they need to be active in their communities, join the workforce, and live their daily lives.  While there is certainly division in regard to people’s ideas of exactly how systems of education should work, there continues to be a shared understanding that these systems should exist in some capacity.  The importance of the right to an education for people with disabilities is not well known or, at least, not as actively recognized, but it should be.

Background of Disability Rights and Education in the U.S.

The Individuals with Disabilities Education Act (IDEA) took effect as the Education for all Handicapped Children Act of 1975.  It was meant to improve the access that children with disabilities have to “a free appropriate public education” and an environment that supports, rather than impedes, that education.  Part of IDEA is a requirement that public schools develop an Individualized Education Program (IEP) for each student with a disability who is enrolled.  IEPs are created and tailored specifically to the needs of each student, because even people who have been diagnosed with the same disability have differing experiences and face different circumstances.  These programs are reviewed every year by the student’s teacher, parent(s), the child themself and a qualified agency representative related to special education.  Other individuals can be brought in to review the program at the discretion of the parents or agency involved.

The Americans with Disabilities Act (ADA) was enacted in 1990 and prohibits “discrimination on the basis of disability in employment, State and local government, public accommodations, commercial facilities, transportation, and telecommunications.”  Title II of the act requires state and local governments to make their services and resources equally available to people with disabilities.  According to Title II, there are architectural standards that suggest buildings should be accessible to all people.  Buildings constructed after the act passed are expected to meet these standards upon when they are built, while buildings that were constructed prior to the passing of the act are to be altered.  Since the services/resources of state and local governments include public educational institutions, these institutions are expected to meet these standards, which helps to make education more accessible.

Acknowledgement Is Not Enough

Despite the American legislation put in place to ensure educational equality for students with disabilities, there is still a lot of work to be done.  Laws have been created but are not always followed.

The Oregon Department of Education, for example, is being sued by Disability Rights Oregon (along with four other legal groups) due to its “lax oversight of special education programs . . . in small, rural communities.” Many schools in the state have been found to give students with learning or behavioral disabilities a shortened school day of only a few hours.  The schools have given a range of explanations for shortening student’s school days, from saying that they were responding to inappropriate behavior (some of which is related to the symptoms of the students’ disabilities) to teachers saying they had a feeling that “it was going to be a bad day.”  In many cases, the students would be able to get through a normal school day if they had the resources they need.  They simply have not been given the opportunity to try.  The lawyers involved in the lawsuit wrote, “Some children who are subjected to shortened school days due to their disability-related behaviors are eventually denied any instruction at all.”  This is a denial of their right to an education and it cannot continue.

The seclusion and unfair treatment of students with disabilities in the U.S. is not limited to Oregon.  According to the U.S. Department of Education Office for Civil Rights, more than 36,000 students were secluded during the 2015-2016 school year, and 66% of those students were students with disabilities, despite only making up 12% of all students enrolled.  Students with disabilities also make up 26% of those who received out of school suspension and 24% of those who were expelled.  Part of the problem is that the federal government does not currently have any actual regulations related to the seclusion of students with disabilities.  It merely suggests that seclusion be used if a student is a physical threat to themselves or others and that the seclusion should end when the student is no longer a threat.  Due to its impact on students’ access to their education, this issue needs to be dealt with as quickly as possible.

Library books. Source: CCAC North Library, Creative Commons

An International Problem

This problem can be found around the world.  In Nepal, for example, children with disabilities are far from having their educational needs properly met.  In 2011, Human Rights Watch (HRW) estimated that more than 207,000 of the country’s children have disabilities.  In 2016, 30.6% of children with disabilities were not attending school.  In some cases, the students with disabilities who are enrolled in school are kept in classes that are completely inappropriate for their age group.  According to HRW report on the situation, one sixteen-year-old named Amman was placed in Class 2, where his classmates were between the ages of seven and ten years-old.  His disabilities are physical, limiting his movement and speech but not his mental development.  The school has steps at its entrance with no ramp available, forcing Amman to crawl to his classroom.  He was not able to use the restroom during the six hours school was in session, so another student would have to go to his house and get his mother to come to the school and help.  Not only is this an immense barrier to Amman’s access to his education, but it also an utterly dehumanizing way to treat someone.

The country is not ignorant of the fact that people with disabilities have a right to an education.  In 2010, the country even ratified the United Nations’ (UN) Convention on the Rights of Persons with Disabilities, which aims to promote and improve the access to the rights of people with disabilities around the world.

Recent Developments

Though many problems still exist in the field of education for people with disabilities, progress is being made.  On January 17, 2019, the U.S. Department of Education announced plans to “work with schools to reduce incidents of improper restraint and seclusion of students with disabilities”.  They will use “compliance reviews” of school systems under suspicion of improper restraint and seclusion of students and “offer guidance on obligations under federal civil rights law.”  According to Elizabeth Hill, spokesperson for the Education Department, they plan to do more than 70 interviews each year.

Disability Rights Are Human Rights

In public conversations about human rights, people with disabilities are often left out or overlooked.  It is important that we intentionally work towards being more inclusive.

Article 24 of the UN Convention on the Rights of Persons with Disabilities (which the United States has still not ratified) focuses on the right to education.  According to the document, countries associated with the UN are expected to “ensure an inclusive education system at all levels and lifelong learning”.  This involves making sure that people with disabilities are not kept separate from the rest of the education system and receive the support they need.

In addition to acknowledging the right to education for people with disabilities, Article 24 includes an explanation of why education is incredibly vital, both in general and specifically in the lives of people with disabilities.  Education facilitates the development of one’s view of others and themselves, their personality, their creative talents, their mental and physical abilities, and their ability “to participate effectively in a free society.”  These developments shape the role that each individual plays in the world, making education an absolutely priceless and fundamental human right.

Resources at UAB

Students at the University of Alabama at Birmingham can contact the campus’s Disability Support Services (DSS) to request accommodations through their website or at 205-934-4205.  This process involves completing an online application, submitting documentation of their disability, and having an Accommodation Planning meeting.  Accommodations that are often used include reduced distraction testing, extended time on exams, note-taking services, assistive technology, and captionists/interpreters.

Keep up with the latest announcements related to the upcoming Symposium on Disability Rights by following the IHR on Facebook, Twitter, and Instagram.

 

At the Intersection of Disability and Everything Else

Kiribati 2009. A blind man sitting at a Braille machine
Kiribati 2009. Photo: Jodie Gatfield, AusAID. Source: Department of Foreign Affairs and Trade, Creative Commons.

When someone says the word intersectionality, do human rights come to mind? Maybe but probably not. For some people, intersectionality is a just buzzword used by protest movements or the liberal media, while for others is a means of social identification. It is okay if you have never heard of it or do not understand it or know how to define it, you are not alone. Although it is an identifier and has mainstream vernacular usage, scholars like sociologist Patricia Hill Collins acknowledge that intersectionality is challenging to define, and only slightly easier to identify when recognized. Hill Collins asserts that “scholars and practitioners think they know intersectionality when they see it. More importantly, they conceptualize intersectionality in dramatically different ways when they use it.” Thus, an essential aspect of societal understanding and identification of intersectionality is our knowledge of its dependent relationship to power and inequity. Intersectionality must have a subject (a person or group of people) that experiences inequality (subjugation/oppression) because of its/their relation to power (the dominant with the hierarchical structure).

Intersectionality relies heavily on social constructions like race or gender, but not as a singular point of inequality. The term “intersection” demands another point—an interlocking point–of inequality. For example, intersectionality must critically examine the subjugation experienced by a person with blindness who is a Hispanic trans woman as well as a teenage girl who is Arab and a wheelchair user, respectively. Both are members of marginalized populations: ethnicity – Hispanic and Arab, gender/sexuality – a trans woman and teenage girl, and disability – blindness and wheelchair user; therefore, the intersectional analysis must include at least two points of oppression. The and makes the difference. For this to occur effectively, individuals must determine how they will employ intersectionality as a definition, in addition to a research tool.

In her essay, Hill Collins sheds light on three possible frameworks for intersectionality: a field of study that examines both content and themes that might be characteristic, an analytical strategy reliant upon intersectional frameworks to explain the social world, and a form of critical praxis connected to social justice practice via scholarship. Intersectionality has increased in popularity as society becomes more aware of the work of critical race theorist, Dr. Kimberlé Crenshaw, and with the rise of protest movements. Many people identify Crenshaw as the creator of the term intersectionality, but Black feminist scholars point to Anna Julia Cooper, Audre Lorde, and the Combahee River Collective, among others as describing the concept in their works years and centuries before Crenshaw.

First, as a field of study, intersectionality has positives and negatives. The positives lay in its complementary adaptability with other disciplines and areas of study, yet, it is here that many of the negatives exist as well. Citing Edward Said, Hill Collins notes that “theories can lose their originality and critical stance as they travel from one domain to another” (6). This travel can result in the misrepresentation of the original intent and the exclusion of some scholarship as has happened over time in fields of study like Black feminism.

Second, as an analytical framework, intersectionality must “rethink” constructs, not only as concepts of work and family but violence and identity, and in direct relation to “underutilized” categories of analysis like class and age. It is at this juncture that disability rights activists and scholars demand an increased inclusion. Using Stuart Hall’s theory of articulation, Hill Collins questions how it is possible for two sets of ideas, the expressed and unexpressed, to create the necessary knowledge needed for an intersectional canon (15). Hill Collins questioning aligns with Ellen Samuels’ assertion that disability remains underrecognized as a “legitimate or relevant position from which to address broad subjects” and Michael Berube’s pronouncement that disability must continually battle against gender, race, and sexuality in various areas. Historically, there has been an imbalanced pattern of research due to the heavy focus on the intersections of race and gender; yet, when considering that one in five human beings live with a disability, multiple constraints apply and extend beyond gender and race.

Lastly, as a praxis, intersectionality can contribute perspective by elucidating areas of social inequality as activists and scholars increase their political engagement. Sociologists Hae Yeon Choo and Myra Marx Ferree observe three ways that intersectionality is/can become practiced: group-centered, process-centered, and system-centered. They caution that even in practice, neglect occurs in facets of the intersectional analysis despite best efforts to adequately include, analyze, and identify because as Crenshaw notes, sometimes conflicting political agendas detract from the areas of oppression.

boys with physical disability playing soccer
Soccer – Boys from one of Mumias’ schools for the physically handicapped. Source: Brenda, Creative Commons

The Intersection of Disability and Everything Else

In many societies today, disability, like most categories of marginalization, boxes members as differing from the norm or as the needy and helpless Other. In many ways, disability has become a fetishized difference and a source of ‘inspiration porn’ when foregrounded in the mainstream via social media, television, and movies. What if activists and scholars began to utilize the constellation of knowledge as outlined by Hill Collins and Choo and Ferree through the employment of an analysis of the intersection of disability and everything else? Persons with disabilities are the global majority when accounting for the entire spectrum of disability; thus, we as individuals who make up the collective, have a chance to bring those surviving on the margins into the center of analysis and discussion.

Humanity must begin to see the inclusion of disability as a prerequisite for the dismantling of structural violence and social injustice. Black feminist and lesbian Lorde, in her comments to a New York conference audience, protested that “survival is not an academic skill. It is learning how to stand alone, unpopular and sometimes reviled, and how to make common cause with those others identified as outside the structures in order to define and seek a world in which we can all flourish. It is learning how to take our differences and make them strengths. For the master’s tools will never dismantle the master’s house. Racism and homophobia are real conditions of all of our lives in this place and time. I urge each one of us here to reach down into that deep place of knowledge inside herself and touch that terror and loathing of any difference that lives there. See whose face it wears. Then the personal as the political can begin to illuminate all our choices” (112-3). If disability replaced either racism or homophobia in Lorde’s quote, how does the level of analysis and research begin to change the conversation surrounding our social understanding of these areas of oppression and subjugation? Intersectionality forces humanity to come to terms with the lack of knowledge about difference while confronting the terror and loathing of difference which lurks inside us as barriers and outside of us as social institutions and societal norms. In whatever form intersectionality finds usage, it is imperative that it remains a tool that dismantles injustice at the personal and political level.

 

**Keep up with the latest announcements related to the upcoming Symposium on Disability Rights by following the IHR on Facebook, Twitter, and Instagram.

Disability Laws: The Power of Policy

Gavel
gavel, cckrt, Creative Commons

Laws and policies not only reflect policy-makers’ knowledge about cultural norms but laws and policies also actively shape our cultural norms as well (Benabou & Tirole, 2011). Inclusive laws and policies may negate the reinforcement of discrimination of marginalized groups by changing attitudes towards said groups over time. This is especially true of the disability community. Prior to the enactment of inclusive policies, persons with disabilities could be legally and explicitly discriminated against in the fields of education, medicine, and employment. Persons with disabilities still face discrimination, but the following laws make strides toward shaping the United States into a more inclusive for persons with disabilities, and these laws have played a key role in shaping cultural norms regarding these issues.

Civil and political rights are protected by many different laws for all Americans; however, key pieces of legislation pertain specifically to persons with disabilities. Currently, three major federal laws protect persons with disabilities in the United States: the Rehabilitation Act of 1973, the Individuals with Disabilities Education Act (IDEA) of 1975, and the Americans with Disabilities Act (ADA) of 1990. Additionally, the United Nations also has implemented the Convention on the Rights of Persons with Disabilities (CRPD), an international commitment to promote accessibility on the global scale.

 

The Rehabilitation Act of 1973

The Rehabilitation Act was the first piece of civil rights legislation to explicitly identify the rights of persons with disabilities and outlaws the discrimination on the basis of disability in Federally-funded programs. This includes barring programs conducted by Federal agencies, programs receiving Federal financial assistance, and Federal employment from discriminating against persons with disabilities.

The Rehabilitation Act also:

  • Defines persons with disabilities as those who have a physical or mental impairment that limits a major life activity, such as walking, seeing, hearing, speaking, learning, or working.
  • Gives students with disabilities the right to appropriate education.
    • ‘appropriate education’ is defined in this context as education that meets the unique educational needs of a student.
  • Requires parents must be notified if their children are tested for learning difficulties, are identified as having a disability, or placed into special education programs. Parents are also given the option to object to their child’s evaluation results through a formal, impartial hearing.
  • Mandates students with disabilities should be educated with their non-disabled peers when appropriate.

The Individuals with Disabilities Education Act (IDEA)

The IDEA requires children with disabilities receive a free and appropriate education in the least restrictive environment appropriate to their individual needs and provides financial incentives for public education institutions complying with federal disability laws. IDEA also requires the implementation of Individualized Education Programs (IEP’s) for each child. These programs are developed by a team of individuals knowledgeable about the child’s situation (typically the child’s teacher, the parents, the child, and oftentimes an agency representative who is qualified to provide special education) and are required to be reviewed annually.

The Individuals with Disabilities Education Act also:

  • Protects children (up to age 21) deemed eligible for special education services.
  • Allocates funds assisting states and other education agencies to meet special education requirements.
  • Requires children in special education programs have a written IEP.
Statue holding the scales of justice
Scales of Justice, Creative Commons

The Americans with Disabilities Act (ADA)

The ADA prohibits discrimination on the basis of disability in employment, state and local government, public accommodations, commercial facilities, transportation, and telecommunications and also applies to the United States Congress.

The Americans with Disabilities Act also:

  • Prohibits explicit discrimination in recruitment, hiring, promotions, training, pay, social activities, and other privileges of employment and restricts questions that can be asked about an applicant’s disability before a job offer is made for employers who possess more than 15 employees.
  • Requires employers “make reasonable accommodations to the known physical or mental limitations of otherwise qualified individuals with disabilities, unless it results in undue hardship”(29 CFR Parts 1630, 1602 (Title I, EEOC)).
  • Requires state and local governments follow specific architectural guidelines in the new construction and alteration of their buildings.
  • Provides a telephone hotline if disability-related complaints need to be filed. These complaints are filed with the Department of Justice, who may provide mediation programs if necessary.
  • Requires all public transportation services (such as city buses and public rail transit) are fully accessible.
  • Requires common carriers establish interstate and intrastate telecommunication relay services 24 hours a day, 7 days a week.
  • Requires closed captioning of federally-funded public service announcements.

 

The Convention on the Rights of Persons with Disabilities (CRPD)

The CRPD and its Optional Protocol were adopted by the United Nations in 2006. With 82 signatories to the Convention, 44 signatories to the Optional Protocol, and 1 ratification to the Convention, the CRPD has the highest number of signatories in history to a United Nations Convention. It is also the first legally binding, international treaty protecting the rights of persons with disabilities. The CRPD is the first human rights treaty of the 21st century and is the first to allow both regional economic integration organizations and civil society are parties to negotiations of a Convention. The UN defines the CRPD as “a human rights instrument with an explicit, social development“. This document reaffirms persons with disabilities (not restricted to physical and/or visible disabilities) must enjoy all fundamental freedoms and human rights.

The Convention on the Rights of Persons with Disabilities also:

  • Is the fastest growing treaty in the history of the UN.
  • Embraces a human rights-based approach (HRBA) of disability. HRBA shifted the approach to disability from “objects” of charity, social protection, and medical treatment towards a doctrine of human rights, envisioning persons with disabilities should make their own decisions about life, the future, and claim rights on their own behalf.
  • Defines disability as an evolving and open concept.
  • Encourages the participation of civil society, particularly persons with disabilities and their related organizations. This follows the Convention’s slogan, “Nothing about us without us.”
  • Protects persons with disabilities from direct and indirect discrimination and provides reporting mechanisms if a person’s rights are violated within the context of the CRPD.
Graphic featuring the globe, United Nations logo, Scales of Justice, and disability logo
Disability laws connect, Mathew Hobbs, Creative Commons

Why Disability Laws and Policies are Needed

There are more than 1 billion people in the world are currently living with a disability; about 59.7 million of them live within the United States. Batavia (2001) asserts civil rights legislation, such as those aforementioned, open doors for persons with disabilities that were otherwise sealed shut while also normalizing persons with disabilities in the workplace and beyond. It is apparent that such legislation has moved the United States and the world toward a more inclusive and accessible world, but there is still work to be done. Batavia (2001) points out less than 20% of complaints filed under the ADA end up ruling in favor of the defendant. This is the typical average for complaints filed under anti-discrimination laws in the United States; however, Batavia also argues the percentage for the ADA specifically should be much higher due to the uniqueness of each individual disability and necessary accommodations for them. Society oftentimes reinforces views of persons with disabilities as a ‘burden’ or ‘incapable’; one way to break these negative stigmatizations is via policy and respecting those policies as citizens.

If laws are changed, then public opinion toward a particular subject may change along with it. However, this change takes time; when sodomy was decriminalized in the United States in the 1950s, public opinion on same-sex and other queer couples began to shift. The shift over time pressured the Supreme Court to rule in favor of Queer Rights when same-sex couples gained the right to marry in 2015. The LGBTQ+ community still faces many obstacles today, but they are substantially less than those faced before favorable legislation was passed. Without a tireless effort, laws such as the ADA or the CRPD may have taken a much longer time to manifest. These efforts must continue in order to eradicate the stigma surrounding persons with disabilities.

 

References:

Batavia, Andrew I., and Kay Schriner. “The Americans with Disabilities Act as Engine of Social

Change: Models of Disability and the Potential of a Civil Rights Approach.” Policy

Studies Journal 29.4 (2001): 690-702.

Benabou, Roland, and Jean Tirole. Laws and Norms. No. w17579. National Bureau of

Economic Research, 2011.

 

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