Tag: CRPD

Part Three: The Different Approaches to Disabilities and the Future of Disability Rights

An image of a woman with disability in a sunflower field with a banner that reads, "nothing about us without us!"

This blog is part three of the conversation around disability rights, especially as it applies to children within the American school system. If you have not read the first two blogs in this series, I suggest you do so. The first blog focused on the historical view of disability and the American school system’s approach to children with disabilities. The second part mainly focused on the struggles that children with disabilities face within the school system, and how these struggles have been exacerbated due to the recent pandemic. This final part will focus on some of the approaches that have been taken in the past to address people with disabilities, and how they differ from a human rights approach. We will also examine how we can help on various levels, whether we want to focus on our personal abilities or advocate for a larger movement.

The Rights of Children with Disabilities

What rights are protected?

An image depicting five children holding signs that read, "the right to be heard", "the right to a childhood," "the right to be educated," "the right to be healthy," and "the right to be treated fairly."
Source: Yahoo Images

Much of what we have established in modern society in terms of children’s rights comes from decades of struggles, from implementing child labor laws to fighting for the right to an education. Similarly, the fight to pass the Americans with Disabilities Act (ADA) was one sure way to protect individuals with disabilities from discrimination. These rights and more are protected under the United Nations, both in terms of people with disabilities, (Convention on the Rights of Persons with Disabilities, CRPD), and with children’s rights (Convention on the Rights of the Child, CRC). Yet, these developments have only occurred in recent years; the ADA and the CRC were passed in America and the UN respectively, in 1990, and the CRPD was not adopted internationally until 2006.

The ADA, passed in the United States, protected the rights of people with disabilities from being discriminated against in all aspects of society. This was the first major legislation that protected people with disabilities from being denied employment, discriminated against in places of business, or even denied housing. In addition to these protections, the ADA required industries to be inclusive of those with disabilities through (among other things) taking measures such as building ramps and elevators for easy access to upper-level floors and building housing units with people with disabilities in mind. While America had passed the Individuals with Disabilities Education Act or IDEA (originally passed in 1975, and renamed in 1990) by this time, the initial form of this legislation allowed schools to place certain students with disabilities in special programs for no more than 45 days at a time. It was not until its improved form was passed in 2004 that provided the necessary financial and social infrastructure for its successful implementation.

The passage of the CRC, which applies to all individuals under the age of 18, focuses on non-discrimination, the right to life, survival and development, the State’s responsibility to ensure that the child’s best interests are being pursued, including ensuring that the child has adequate parental guidance. Additionally, it focuses on the child’s right to free expression, free thought, freedom to preserve their identity, protection from being abused or neglected, adequate healthcare and education, and includes certain protections the State is required to offer the children, including protection from trafficking, child labor, and torture. Article 23 of this Convention specifically focuses on the rights of children with disabilities, adding that these children have the right to the care, education, and training they need to lead a life of fulfillment and dignity. It also stresses the responsibility of the State to ensure that children with disabilities can live a life of independence and protect them from being socially isolated. Even though the UN passed this Convention in 2004, America is the only nation that has yet to ratify this treaty. This is why certain realities continue to exist, such as what is happening in Illinois.

Finally, we have the CRPD, which entered into force in 2008, only 15 years ago. Influenced by the ADA, the Convention on the Rights of Persons with Disabilities was passed to ensure that people with disabilities were fully protected under the law, including from discrimination, with the ability to function as fully pontificating citizens of their societies, with equal opportunities and the right to accessibility in order for them to lead a life with the dignity and respect afforded to their able-bodied counterparts. This convention had massive support and draws from both a human rights focus and an international development focus. What makes this convention unique is the implementation and monitoring abilities embedded within the treaty itself, and it includes non-traditional actors from communities (usually those with disabilities) with specific roles in charge of monitoring the implementation of this treaty. Unfortunately, the United States, while Obama signed the treaty and passed it to the Senate for their approval in 2009, has yet to fully ratify the CRPD treaty as well.

Some Approaches to Disability Rights

Upon understanding the various nuances of this conversation, we can now explore the three different approaches to defining disability in society. These approaches examine the issues that people with disabilities face and provide models influenced by differing fields of expertise. Many within society view disability as a medical issue and their solutions to the struggles faced by people with disabilities are medically focused. Similarly, others believe that disability is an issue of how society is structured, and their proposals for solving these issues lie within the realms of reshaping society to be more accessible to people with disabilities. Still, another approach built upon the foundations of human rights, focuses on the individual first, and the disability as an extension of their individuality. We will explore these three approaches and their pros and cons.

Approach 1: Medical Model of Disability

An infographic depicting what the medical model of disability stands for. At the center is an individual with arrows pointing to them to place the full responsibility of being disabled on the individual itself.
Source: Yahoo Images

            As mentioned above, some people view disability as a medical issue, and this approach can be categorized as the medical model of disability. This means that they believe that the “problem” of disability belongs to the individual experiencing it and that disability comes from the direct impairment of the person. The focus of this approach is to look for medical “cures” for disability, which can only be provided by medical “experts” based on the specific diagnosis. While it may be true that individuals with disabilities require medical help from time to time, their entire existence does not revolve around this notion of viewing disability as an illness. The focus here is to “fix” the person with disabilities, so they can become “normal” again. This approach also makes use of the “special needs” rhetoric, which can result in the isolation and marginalization of people with disabilities.  Media plays a big part in portraying people with disabilities as weak or ashamed of their disability, which can invoke fear or pity for people with disabilities within the larger society.

Approach 2: Social Model of Disability

A cartoon image to represent the social model of disability. In the image, there are many circular characters attempting to enter a square entrance, and cannot fit in. The gatekeeper informs them to change in order to fit into the system, and they reply back that the system could be changed instead to accommodate them.
Source: Yahoo Images

            Another approach that has been proposed is what is known as the Social Model of Disability. In this approach, the “problem” of disability is seen as a result of the physical and social barriers within society that exclude people with disabilities from fully participating in their society. Disability is seen as a political and social issue, and the goal of this model is to be more inclusive and recognize the prevalence of disability within our societies. This means looking closely at the ableist social institutions and infrastructures present within society and attempting to address these manmade challenges posed by people with disabilities. This model recognizes the social stigma around disabilities and recognizes people with disabilities as differently abled rather than viewing them as incapable of living an independent lifestyle. This approach places individuals with disabilities on a spectrum rather than the two categories of disabled and able-bodied. The goal of this approach is to be socially inclusive of all individuals, regardless of their disabilities.

Approach 3: The Human Rights Model of Disability

An image depicting various individuals with the saying, "Nothing about us, without us, is for us" around them.
Source: Yahoo Images

Finally, there is the Human Rights Model of Disability, which builds upon the foundations laid out by the Social Model of Disability and the Universal Declaration of Human Rights (UDHR). In this approach, the focus is on viewing the individual with a disability as a human first, recognizing that disability is a natural part of humanity that has existed as long as humans have been around. While it shares a lot of similarities with the social model, the human rights approach emphasizes not only the right of every individual to be treated equally before the law but also stresses that a person’s impairment should not be used as an excuse for denying them rights. This is essentially what the CRPD centers around, and the main goal of this approach is to ensure that people with disabilities have equal opportunities and protect their right to fully participate in society, politically, civilly, socially, culturally, and economically.

How Can We Help?

A cartoon image with EQUAL on the top, and many characters lined up with shirts that have individual letters on them that spell out "RIGHTS" below it. Below them is the phrase, "human beings are born free and equal - Universal Declaration of Human Rights 1947" on the bottom of the image.
Source: Yahoo Images

On the Internation Level

While the United Nations has a convention that focuses on protecting children’s rights, it is highly debated whether these treaties are being enforced around the world. Child labor is still common in various places around the world, including right here in Alabama. While it can be argued that the US has not ratified the treaty and that is why the UN cannot do anything about this issue, there are other places that have ratified the treaty that still places children in dangerous working conditions and face no real repercussions from these decisions from the UN. In 2019, many tech companies were sued for their use of child labor in other countries to mine the precious minerals they require to produce their devices. Many textile companies within the fashion industry use child labor in nations that have ratified the children’s rights treaty. While the United Nations is trying its best to protect and promote the rights of vulnerable communities, it has not been able to enforce these treaties and regulations, and as a result, atrocities against those vulnerable communities, (including children), continue to occur. How can we as human beings, ensure that all children are protected from harm, not just those able-bodied, living in wealthier nations? This is something that needs to be addressed, and it requires the cooperation of many different nations willing to put their differences aside and work together to find a solution.

On the Domestic Level

As we explored in the human rights model of disability rights, it is the responsibility of society to provide equal access to all its citizens. This includes its citizens who have disabilities, and not doing so would discriminate against those who have disabilities and violate the Americans with Disabilities Act. This means that both on a national and local level, our infrastructure needs to be updated with an inclusive mindset that makes the roads safer and more accessible to all the citizens using them. As a state, Alabama could not only fix the infrastructure, but also pass bills to ensure that people with disabilities receive the care they need, including employment opportunities, medical assistance, food assistance, and any financial help they may require. Furthermore, on a national level, the police (or another department focused on social work) can be better trained to recognize the various disabilities, both visible and invisible, so people with disabilities are not wrongfully imprisoned for “behavioral” issues. This training would help erode the school-to-prison pipeline that has replaced disciplinary standards in American schools and make way for a brighter future for children with disabilities. Finally, the United States can, at the bare minimum, ratify the Convention on the Rights of the Child, signed into existence in 1990 by member states of the United Nation. As we mentioned earlier, the United States is the only nation in the world that has yet to ratify this treaty.

On the Individual Level

We can all be more mindful of our actions and our ableist mindsets. Next time you walk down the street, pay attention to the roads and sidewalks. Are there any sidewalks for people with disabilities to use safely? Are there curb cuts, and are those curb cuts freely accessible or are they blocked? How accessible are public buildings such as restaurants, storefronts, or even the DMV? Are there enough parking spots allotted to people with disabilities, and are those spots easily accessible, or blocked off by other vehicles? Thinking outside of an ableist mind frame is the first step toward being more inclusive of people with disabilities. It might seem like a powerless and pointless step to take, but the more you start to notice the ableist structures within society, the more you will want to speak up about these issues the next time you have the opportunity. You will also be more mindful of your own ableist actions and how they may have unintended consequences. If you are a parent, you have the ability to question your school’s practices concerning children with disabilities and offer support to the children and their parents. As an individual, you can also contact your representatives to pass legislation that would empower people with disabilities to live independently. As a society, we need to get past the stigmatization of this group and normalize disability being an innate part of being human.

 

 

Disabilities and the American Education System: From the Past to the Present

A cartoon image depicting students of various backgrounds and disabilities grouped together around the phrase, "We are all wonderfully made"
Source: Yahoo Images

In the last blog, we covered the contextual history of the American Education System, primarily, who was allowed education, who was not, and even the differences in the quality of education that children in America received. We also explored the historical treatment of people with disabilities, both in the larger society, as well as in children with disabilities within the school system. Understanding the past is crucial to analyzing why certain events occur as they do in the future. That is what we set out to do in this continuation of the conversation about disabilities and the American education system. In this second part, we will focus on the realities children with disabilities witness within the education system, including the challenges they face, the school-to-prison pipeline that exists, and how this impacts their development (both mentally and physically). We will then explore how the recent pandemic exacerbated these conditions, and what sort of rights the children possess in this post-pandemic world.

Children with Disabilities in the Education System Today

An image depicting a child sitting with his head in his hands, next to a pile of books, with various phrases listing different learning disabilities.
Source: Yahoo Images

The many challenges faced by students with disabilities in the classroom

Children with disabilities today face many challenges within the classroom even without taking the pandemic into account. These challenges vary from physical barriers to socio-emotional ones. One thing that needs to be recognized is that not all disabilities are alike, and with various disabilities come various challenges. I don’t want to appear to be generalizing the struggles that children with disabilities face in the school system, because each individual’s experiences vary, even between different places. Some states within the United States may be very inclusive, while others may place the responsibility of accessibility on the people with disabilities themselves. Regardless of which state you live in, my goal here is to spread awareness of the various challenges that children with one or multiple disabilities face as they maneuver through their primary academic journey.

With that being said, one of the most common barriers that children with disabilities face is on the social level. Throughout history, children with disabilities have been separated from the rest of the able-bodied society, and this is also true within the school system. Many schools, when they began to accept children with disabilities into the school system, would educate them separately (in the basement or another room) from the other children. Even today, many children with learning and speech disabilities require additional help from trained professionals, which requires these children to spend extra time on their academics, and less time socializing with their peers. This naturally distances them from able-bodied children their age and can lead children with disabilities to become victims of many instances of bullying and harassment. A crucial element to consider is that while many children their age are dealing with the various emotions that come from development, children with disabilities have to deal with additional fears and insecurities surrounding their disabilities, as they learn to accept and adapt to life with disabilities. This can be challenging in and of itself, without having to deal with the social pressures from peers.

Additionally, while schools receive federal funding to meet the required measures for the children with disabilities within their institutions, this funding is limited, covering less than a quarter of the expenses needed to fulfill the required services for each student. The Individuals with Disabilities Education Act (IDEA) we covered in the previous blog allows Congress to allocate up to 40% of the average funding per student, but unfortunately, this has never been exercised by Congress, and funding for special education programs continues to be miserly. Schools receive  15% of the funding they are allocated, but they are still required to fulfill all the mandated regulations simply for receiving federal funding. This means that they have to come up with the remaining 85% of the expenditures on their own, in place of the 55% they would be responsible for covering if Congress secured the full 40%. This can place additional strains on these schools that are already struggling for funds.

Furthermore, children with learning disabilities require trained professionals to provide them with additional support throughout their academic journey. Someone who is hearing impaired may require additional resources to combat the auditory issues they face, or someone who is visually impaired may require additional lessons on how to read in Braille. Others with learning disabilities such as dyslexia (which is a disorder in which someone has difficulty reading and processing language), may need additional patience and support to process the information they are learning. Public schools, by law, are required to provide assistance to children with disabilities and those who have been through traumatic experiences. Licensed professionals that focus on educational needs for children with learning disabilities can be hard to find, and this has only worsened due to the pandemic. As many as 44 states experienced this shortage even before the pandemic, and this number continues to grow due to the issues of limited funding discussed earlier. Without the necessary help that students with learning disabilities require, they continue to fall behind their peers academically.

Many of these challenges can be addressed with more funding allotted to the education system as a whole, and professions within the field of special education can be incentivized by the government (by for example, making the training programs free and accessible to those who are interested) to address the shortage of licensed professionals. The education being taught in the schools can be more inclusive of children with disabilities, with opportunities for the children to share their experiences with their peers and help remove the stigma associated with disabilities by normalizing helpful conversations around disabilities. While these challenges can have a great impact on the learning abilities of children with disabilities, there are some challenges that can have drastic impacts on their futures as a whole.

The school-to-prison pipeline

A cartoon image showing the relationship between schools and the legal system, showcasing the school-to-prison pipeline that has become so prominent in the American School System.
Source: Yahoo Images;

Unfortunately, along with an increase in school shootings within the educational system, another phenomenon that has become all too common is the use of law enforcement to discipline children. More and more stories have been reported regarding children with disabilities and children of color being subjected to drastic disciplinary measures by school systems. When a child “acts out” or showcases any behavior not supported by the schools, the educators have resorted to involving the law instead of following disciplinary protocols within the schools (such as contacting parents, placing students in detention, or for more serious issues, using suspensions). Police are called on these students, and educators watch as young children are punished for their misdeeds by being harassed by the police. In many instances, these incidents have turned deadly, as police officers have used full force on young children, to force them into complying, at times jeopardizing the children’s well-being. Children as young as 7 years of age have been placed in handcuffs and threatened jail time, for childish behavior such as spitting or throwing tantrums. This can be especially dangerous when children with disabilities are involved because they are accused of “misbehaving” when they are simply reacting differently to situations than their able-bodied peers. The police, with little to no training on the different ways to approach people with disabilities, only escalate the already tense situations.

According to a CBS News analysis of data from the Education Department in 2017-2018, children with disabilities are four times more likely to be arrested than their able-bodied counterparts. Another research conducted by Cornell University reports that 55% of Black men with disabilities have been detained before they reach the age of 28. Young African American children with disabilities, therefore, are the most at-risk demographic to face legal repercussions for “behavioral” issues common among most children their age. This phenomenon, known as the school-to-prison pipeline, which disproportionately targets students of color, (and children with disabilities), involves the use of the criminal and justice systems as a tool to discipline children. Unfortunately, these disciplinary attempts remain on the permanent records of the targeted children and can have lifelong implications that determine their future.

An example of this school-to-prison pipeline is clear when looking into some of the instances where law enforcement is used to discipline children. Jacksonville, Illinois is home to a particular school that makes use of its law enforcement officers for behavioral issues. Garrison School, a public school where children with disabilities in that region attend, has been in the news recently for the staggering number of arrests made within a single school year. Although the population of this school is an average of 60-70 children, the police, who are located less than 5 miles from the school, have been called over 100 times for “behavioral” issues, such as throwing tantrums and spraying water. An investigation into this school found that in the school year 2017-2018 alone, more than half of the entire student body was arrested. As the only public school for children with disabilities in that region of Illinois, caregivers are limited in choices of schools for their children. In addition to having disabilities, the children at this particular school have also experienced immense trauma and violence in their past. Arresting these children for their “behaviors” continues to place these children in traumatic situations, further impacting their development.

Impacts on children with disabilities’ development

An infographic depicting the prevalence of mental health issues among the youth. In this infographic, it states that 13% of youth face mood disorders or depression, 32% deal with anxiety disorders, 9% with ADHD, and 3% with eating/feeding disorders.
Source: Yahoo Images

Using the criminal and justice systems to punish or “discipline” children with disabilities can have lasting impressions on the children’s futures. For one, especially children such as those from Garrison School, who deal with personal trauma and violence from their past, experiences with law enforcement can deteriorate their mental health even further. Even those without previous trauma can have lasting impressions on their academic success, meaning that children who have been disciplined with the use of law enforcement are even more isolated from their peers and can experience breaks in their educational journeys. Studies have shown that children who have their needs met are more likely to outperform those students who do not have their needs met. Linking back to the school-to-prison pipeline, those students who have been arrested and imprisoned as young adults are more likely to continue down this path of criminality. Additionally, students with disabilities that have been imprisoned have to face the added struggles of maneuvering the prison system with disabilities, and these struggles are increased with multiple disabilities, especially with invisible disabilities, in which case, many people may not even believe the existence of these disabilities. Studies have shown how incarceration can worsen issues of mental illness within the prison population, and when translated to the impact imprisonment has on people with disabilities, these conditions are exponentially worse.

How it impacts children with disabilities’ professional futures

In addition to the harm this causes to the development of children with disabilities, the practice of using law enforcement to discipline school children has far-reaching consequences. For one, the children who are constantly “othered,” bullied, or harassed by both students and teachers can internalize their experiences and react to them, increasing their chances of being disciplined again for behavioral issues. In addition to that, being imprisoned, even for a few days, can be a traumatic experience that can shape your worldview, and as a result, your future. For young, developing children, these experiences can be impressionable, and coupled with the isolation that many children with disabilities experience, this can be a devastating combination, resulting in the deterioration of the children’s physical and mental well-being. Furthermore, many of these zero-tolerance policies that end in the arrests of children happen due to the faculty members pressing charges against the children. These charges, though they can be sealed for juvenile offenses, can lead to more charges in these children’s future into their adulthood. A criminal history into your adulthood can result in slim educational and employment options. Research conducted more broadly on this subject has been reported by the Prison Policy, and it showcases how increasingly difficult it is to find decent employment upon exiting the prison system. The report adds that even when formerly incarcerated people do find employment, they are often paid fewer wages than their co-workers.

Applying this research to children with disabilities who are disciplined through the legal system, can be an even bigger challenge for their futures. People with disabilities experience many barriers to obtaining employment even without imprisonment on their records. Studies have shown how incarcerating children does not deter them from engaging in criminal behavior in the future; it might actually have the opposite impact. Finally, children who are incarcerated experience large gaps in their education, and this can impact their ability to successfully enter the job market. This issue is exponentially worse among children with disabilities because they are more likely to be imprisoned for “behavioral issues”, and expands the academic gap felt by so many children with learning disabilities who are already facing many social and learning barriers.

How did COVID make things worse for children with disabilities?

An image of a child sitting in front of a computer trying to learn virtually during COVID-19.
Source: Yahoo Images

The pandemic was a time of uncertainty, and many of us were scrambling around not knowing what to do. Even as more and more information came out about the virus itself and how to safeguard it, there was a lot of anxiety and misinformation being spread around. Children with disabilities had to navigate not only their personal lives with their unique experiences but also the larger society that was falling apart around them in the face of a virus. Many businesses and schools shut down in the beginning, which meant that children had to adjust to different learning styles, something that may have been easier for some, but widened the academic gap for others. Children with disabilities as a whole had to be mindful of the threat that the virus posed on their lives. This virus was especially deadly to those with pre-existing conditions and for those who were immunocompromised, both of which apply to many children and adults with disabilities. So, constantly having to live with the anxiety of whether or not they might contract the virus would have been stressful enough without the masking and vaccine debates that have politicized this medical crisis. What is worse, COVID-19 vaccines for children were not available for over a year after the pandemic first began, leaving this population vulnerable to infections with no way to protect themselves against them.

Additionally, along with their children, parents, and caregivers of children with disabilities faced new challenges as everyone attempted to adapt to the “new normal”. While the mandated quarantine helped with transportation issues for some, it opened up a whole new set of issues for many. Children with learning disabilities who received additional help from professionals either had to go without it or transition to seeking their help through zoom. For some, accessing help through Zoom and Telehealth was extremely helpful in addressing the medical needs of people, and this had a positive impact on people with disabilities as a whole. However, accessing Zoom and Telehealth was a challenge on its own for many who lived in rural areas or marginalized areas where internet services were very minimal or nonexistent, or simply unaffordable. The pandemic was a time when many people also lost jobs, so children faced additional financial repercussions from the pandemic. These instances further widened the academic gap among children with disabilities.

This blog mainly focused on the struggles that children face within the American school system. Part three of this series will focus on some of the approaches that have been taken historically when addressing disabilities, and some ways in which we can take action, on a personal level, on a local or national level, and even on an international level.

 

 

The Forgotten and Overlooked: Refugees with Disabilities

Disabled refugee fleeing to find a new home
Source: Yahoo Images

Recently, I was able to witness the refugee camp conditions myself. In July 2017, I traveled to Amman, Jordan, where I volunteered at three refugee camps. Speaking to the refugees and listening to their stories was heartbreaking. Many did not have access to food, water, or medicine unless given to them by various organizations. I also met a few people who were physically disabled due to the conflict; they explained how the current condition of their camp did not help them at all. Many had to escape Syria by foot or crammed in the back of a truck. This is neither safe nor accessible to many disabled persons. Many individuals did not have access to essential resources that we use daily, especially disability-accessible resources. The effects of COVID-19 have only worsened the situation. Since the pandemic began, the UN refugee agency has reported that eighty-four percent of refugees with disabilities cited food insecurity as their biggest concern in Lebanon.

“Too often invisible, too often forgotten, too often overlooked,” is how Light for the World describes refugees with disabilities. With the population of refugees increasing, the concern for their protection and access to resources is left unknown. Refugees and displaced persons are individuals fleeing from war-torn countries, poverty, and hunger. They are often neglected and not provided with the proper care and resources, especially those with disabilities. Many have had disabilities on their way to escaping or were born with some form of disability. In the aftermath of the Syrian war and current conditions in Afghanistan and Haiti, many individuals attempt to flee to find protection and asylum. It’s essential to recognize that many displaced individuals, especially those with disabilities, cannot access the necessities they need to live adequately.

Disabilities within the Displaced Communities

Article one of the Convention of the Rights of Persons with Disabilities (CRPD) classifies that “persons with disabilities include those who have long-term physical, mental, intellectual, or sensory impairments, which in interaction with various barriers may hinder their full and effective participation in society.” It’s been noted that more than sixty percent of  Syrian refugee households contain at least one person with a disability. Additionally, it has also been reported that twenty-eight percent of persons with disabilities list illnesses or diseases as the primary cause of their disability. These illnesses are brought by the vulnerable conditions they are living in. Although there have been reports of disabilities from birth, most statements have been stated to have disabilities caused by conflict.

Disabled man in a refugee camp
Source: Yahoo Images

Individuals with disabilities are already a vulnerable group of people, and refugees with disabilities have even less access. Disabled women are the most vulnerable as they experience “psychological, sexual or physical abuse in natural disasters and conflicts.” Organizations such as the Human Rights Watch (HRW) have urged world leaders providing aid to take more action in funding at-risk groups, such as individuals with disabilities. Emina Cerimmovic, a senior disability rights researcher at HRW, stated that even with all the commitments to better reach persons with disabilities, “displaced people with disabilities continue to struggle even to get basic services.” An international call for action is needed to ensure displaced persons with disabilities can access the necessities required to survive.

Conditions of Refugees with Disabilities 

It comes as no surprise when learning how fragile and inaccessible conditions in refugee camps are. Most of these camps are created by the displaced persons themselves. World leaders and governments have shown commitment to protecting refugees and displaced people by providing aid, asylum, and new areas to live. However, these support systems do not take the needs of people with disabilities into account.

Volunteers at a refugee camp in Lebanon assisting with a baby that has disabilities
Source: Yahoo Images

What’s Next? 

Assessing the conditions many refugees with disabilities live in and ensuring that their needs are met is imperative. As the situation grows more dire, what can the world do to better the conditions and resources for refugees and displaced persons with disabilities? The main problem is the lack of and slowness of implementation of aid from world leaders. The information of what is needed has been provided to countries around the world and NGOs, but resources are yet to be delivered. The international community needs to provide aid specifically for those with disabilities, accessible camps need to be built, and medical attention needs to be supplied more. NGOs currently operate only under donations, so provisions are limited by a lack of funding.

What Can You Do? 

As we have access to many daily necessities such as food, water, disability-accessible bathrooms, and resources, many worldwide do not. It is essential to learn and educate ourselves about the current situations that hinder many lives. Check the resources below to donate or learn about organizations providing aid to refugees and displaced persons with disabilities.

Resource Guide for Serving Refugees with Disabilities: United States Committee for Refugees and Immigrants Assisting Refugees with Disabilities

To Donate:

UNHCR Mercy Corps: UNICEF United In Humanity

Breathing Lessons: Disability Rights in the Wake of COVID-19

The novel coronavirus (COVID-19) has provoked an unprecedented reality for much of the global population by streamlining widespread bureaucratic frustration, health anxiety, and social distancing. Most people know that older adults and people with underlying health conditions are disproportionately affected by COVID-19, although many people fall under both these categories and identify with a disability. Also, due to the limited resources available to treat people with COVID-19, concerns have emerged about who receives what type of care. This would force health providers with the grim task of dictating whose lives are worth saving. This blog addresses concerns about rationing care amid the influx of COVID-19 patients and how this might affect the largest minority group in the United States (26%) and world (15%), people with disabilities.

Word Health Organization suggests COVID-19 is particularly threatening to people with disabilities for a list of reasons: (1) barriers to implementing proper hygienic measures, (2) difficulty in social distancing, (3) the need to touch things for physical support (e.g. assistance devices; railings), (4) barriers to accessing public health information, and (5) the potential exacerbation of existing health issues. These issues add insult to injury because, even without COVID-19, people with disabilities by-and-large receive inadequate access to health care services. This is largely due to the competitive nature of health systems which value profit maximization and, thus, disadvantage people with disabilities as consumers in the health care market.

Recently, select states and hospitals have issued guidelines for health providers that would potentially deny people with disabilities treatment for COVID-19. Two entities, Alabama Department of Public Health (ADPH) and Washington State Department of Public Health (WSDPH), have recently come under scrutiny because of their efforts to fulfill such guidelines.

ADPH’s Emergency Operations Plan suggests that ventilator support would be denied to patients with “severe of profound mental retardation”, “moderate to severe dementia”, and “severe traumatic brain injury”. This controversial protocol has recently grabbed the attention of Alabama Disability Advocacy Program and The Arc thus leading to a complaint with U.S. Department of Health and Human Services Office for Civil Rights (OCR) regarding discrimination toward people with intellectual and cognitive disabilities.

With Washington notoriously being one of the first COVID-19 hotspots, WSDPH and the University of Washington Medical Center have come under fire for their plans to develop a protocol that would allow health providers to access a patient’s age, health status, and chances of survival to determine treatment and comfort care. These efforts have been confronted by Disabilities Rights Washington with their own complaint to OCR that declares any medical plan that discriminates against people with disabilities effectively violates the their rights and is, therefore, unlawful.

OCR swiftly responded to these concerns, as well as those from Kansas and Tennessee, by stating that, even in the case of pandemics, hospitals and doctors cannot undermine the care of people with disabilities and older adults. OCR Director Roger Severino exclaimed, “We’re concerned that crisis standards of care may start relying on value judgments as to the relative worth of one human being versus another, based on the presence or absence of disability,” and “…that stereotypes about what life is like living with a disability can be improperly used to exclude people from needed care.”

Also, with New York currently having most of the U.S.’s confirmed COVID-19 cases, they may very well be the first state to face the imbalance of available ventilators and patient demand. Disability advocates have recently decried verbiage in New York’s Public Readiness and Emergency Preparedness (PREP) Act that could provide immunity from civil rights for some patients. Thus, U.S. state and federal powers are playing tug-of-war with the status of disability rights during the COVID-19 crisis.

Not Today #COVID19 Sign Resting on a Wooden Stool.
Not Today COVID-19 Sign on Wooden Stool. Source: Pexels, Creative Commons.

However, these concerns are not limited to the U.S. In the developing world, many people with disabilities are segregated from their communities in overcrowded facilities, while thousands of others are shackled and incarcerated. This weak enforcement of disability rights positions people with disabilities, in countries such as Brazil, Croatia, Ghana, India, Indonesia, and Russia, at-risk of further inhumane treatment by receiving limited or no appropriate care related to COVID-19. As a result, Human Rights Watch urges state and local authorities to return these populations to their families and demand they provide needed support and services within their communities.

Nearly every country in the world has ratified the United Nations’ Convention on Rights of Persons with Disabilities (CRPD) which aims to fulfill the human rights and fundamental freedoms of people with disabilities. More specifically, Article 25 of CRPD suggests people with disabilities have the right to non-discriminatory health care and population-based public health programs. Thus, nearly every person with a disability around the globe is associated with a governmental power that claims to be dedicated to fulfilling the promise of CRPD. However, in the wake of COVID-19, will these words be put into action?

These unprecedented events are a turning point for how we view our bodies, health, and communities. This is also an opportunity to view the world through the perspective of those in your community such as people with disabilities who represent an array of impairments, challenges, and experiences. Despite boredom and apathy being at the forefront of many people’s isolation, images of life versus death surround others, and for a good reason. In these decisive weeks, and likely months, there has never been a greater time for people in the U.S. and abroad to acknowledge that disability rights are human rights.

Misleading Media: Disabilities in Film and Television

 

Rows of seats in a movie theater.
Movie Theater Seats. Source: I G, Creative Commons

While one in four people in the United States live with a disability, it is unlikely that a person would give that estimate based on representation in popular media.   

Is this because of an overall misunderstanding about the parameters of disabilities among the general public?  Or do the producers of film and television realize they are failing to accurately represent society and just not caring? 

Even the media that currently feature characters with disabilities are often misleading and lean heavily into pre-existing, incorrect stereotypes.  Manifestation of this issue draws parallels with insensitive stereotypes about race, gender, and sexuality to the use of common (over-used) archetypes.   

Character Archetypes 

One way in which film and television often generalize people with disabilities is using character archetypes.  It worth noting that archetypes are not inherently bad, rather they become a problem when they are focused around a specific group of people. As a result, this creates/reaffirms the assumptions that people make about others.  When it comes to characters with disabilities, it is especially problematic, as these characters are rarely depicted outside of their archetypes while non-disabled groups may be more likely to have a nuanced portrayal.  

There are three main archetypes used in the creation of characters with disabilities: the helpless victim, the evil villain, and the inspirational hero. 

The Helpless Victim 

The helpless victim character is severely limited by their disability and is depicted as having little chance of happiness or normalcy in life unless their disability is removed.  This character is depicted as needing to be “saved” from their condition and are designed to evoke pity and sympathy from the audience rather than be viewed as a regular person.  These characters are often rescued from their disabilities through “miraculous” events whether it be an “unexplainable change” or directly stated as part of an intervention by a higher power.  Not only does this lead people to look at people with disabilities with the same pity they give fictional characters, but it also fosters an inaccurate depiction of many people’s experiences with their own disabilities.  Contrary to these depictions, people can have disabilities and live happy lives at the same time.  The helpless victim archetype is also sometimes used for comedic purposes. For example, a person with a disability does or experiences something related to their disability that mildly harms them or is considered inappropriate by societal norms.  This is shown in how Forest Gump is depicted in relation to his intellectual disability.  This allows people who do not have disabilities to feel comfortable with not taking people with disabilities seriously or giving them the same respect they give people who do not have disabilities.   

The Evil Villain 

The second main archetype is the evil villain, often designed as a dangerous and uncontrollable monster.  This character is often seen in horror films, such as the Unbreakable trilogy, Gerald’s Game, and many more.  The horror genre is notorious for using both physical and mental disabilities (often those that the general public is not well-educated on) to frighten audiences.  Since many of the disabilities that are targeted by this archetype are unfamiliar to most people, many audiences walk away having absorbed a great deal of misinformation and a fear of people with these disabilities.  These representations have led many people to believe that people with disabilities, particularly any mental disorders that are unfamiliar, are dangerous and should be avoided.  In reality, people have a tendency to largely overestimate the likelihood that a person with a mental health disorder will become violent.  Additionally, when people with these kinds of disabilities do become violent, is largely linked to other factors, such as substance abuse and family history. 

An example of the evil villain character is the Beast from M. Night Shyamalan’s Unbreakable trilogy.  The Beast is an alter in a system with Dissociative Identity Disorder (DID) that is depicted as having super-human abilities and a desire to get rid of all impure people in the world.  Throughout the series, he is depicted clearly as a violent monster.  For many people, these movies were their first exposure to DID, and, though it did not necessarily convince people that DID gives people supernatural capabilities, this has led to many people having a serious misunderstanding of DID and a fear of people who experience the disorder.  Even the “nice” alters in the system were depicted in a negative light, as they helped the Beast carry out his evil plans.  This representation of DID is also problematic because there are so many misleading or definitively incorrect ideas about DID propagated in these films.   

Shyamalan himself stated, “I wanted to take something scientific and psychologically proven and keep going with it.  The first two, three steps have been proven, then the next one was not proven, but it’s a question. Do you believe it, what I’m suggesting?”  It is important to remember that real people have disorders like DID, not just fictional characters.  When you willingly spread misleading ideas about them, you are potentially causing serious harm to their present and future wellbeing which you can read more about in this blog. 

A parking spot reserved for people with disabilities.
Parking bay. Source: David Morris, Creative Commons

The Inspirational Hero 

The third main archetype is the hero/inspirational character with a disability is held up as an example of someone “overcoming the odds”.  These are the characters that lead people to say, “well if they can do that, then I can do anything!”  While it is considered a positive stereotype, it is nonetheless problematic for several reasons.  First, it suggests that the only way a person can be happy is if they are “cured” or if they overcome their disability.  It specifically frames disabilities as enemies to defeat rather than a part of daily life.  It can also lead people who do not have disabilities to believe that people who do have them will be fine if they only try hard enough.  As a result, this may make them believe they do not have to do anything to accommodate people with disabilities.  Depicting people with disabilities this way can also lead to people without disabilities looking to them for sources of inspiration and examples of courage rather than as regular people. 

Paul Hunt’s List of Stereotypes 

A 1991 study by disabled writer and activist Paul Hunt established a list of ten common stereotypes of people with disabilities.  This list includes depicting people with disabilities as: “pitiable/pathetic”, an “object of curiosity or violence”, sinister or evil, the “super cripple” (as if having a disability anoints them some sort of superpower), a way to establish atmosphere, laughable, their own worst enemy, a burden, “non-sexual”, or being unable to participate in daily life.    

The Connection to Human Rights 

Many people develop their understanding of different disabilities through the representations they see in film and television which impacts the way people are viewed by their local communities and, therefore, their ability to access their human rights.  The way students are treated by their classmates impacts how they benefit from their educational experience (Article 26 of the United Nations Universal Declaration of Human Rights).  The way people are treated by their employers (or potential employers) and co-workers impacts their access to a favorable work environment without discrimination (Article 23).  The way people are treated holistically by their community impacts their ability to actively participate in their communities (Article 27).  A community’s view of people with disabilities can also impact their willingness to make accommodations for them which further affects their ability to access the aforementioned rights.  

How Do We Identify Good Representation? 

One aspect of good disability representation is that a character’s purpose is not solely based on their disability.  If the character were replaced with a non-disabled character, without changing any other aspects of the story, would they have “a story, goals, relationships, and interests”?  In a good piece of representation, the answer would be “yes”.  While a disability might be a significant part of a person, it is not the only characteristic that shapes their experiences.   

The Entropy System, a system with DID who makes educational YouTube videos about DID, has come up with a list of four criteria to identify good representations of DID in media, three of which could be applied to other disabilities as well: 

  1. Does it “communicate proper diagnosis and treatment”? 
  2. Does it address the cause of the disability? 
  3. Is the character relatable?  Are they well-rounded and realistic? 

An Example of Good Representation: A Quiet Place 

John Krasinski’s film, A Quiet Place, is a wonderful example of quality representation.  In the film, the Abbot family is fighting to survive in a world where making a sound could be a death sentence.  Reagan, the daughter in the family, is deaf, which has led to the entire family’s ability to communicate silently through American Sign Language (ASL).  Reagan’s disability is not treated as a burden or as a superpower.  While their knowledge of ASL is a key tool in the family’s path towards survival, it does not change the way Reagan is treated as a character.  She is a normal kid.  She is a multi-dimensional character who has strong relationships with her family and faces personal struggles that are unrelated to her disability.  The character is also played by a deaf actress, which is an important part of good representation and surprisingly rare on television and in film. 

The existence of quality representation for people with disabilities is increasing in television and in films like A Quiet Place, but we still have a lot of work to do.  It will take time, but we can hopefully look forward to a day where people with disabilities are well represented in popular media. 

A Seat at the Table: Learning the True Meaning of Representation at COSP12

Image showing a sculpture of a globe outside the United Nations building in New York.
Globe outside the United Nations. Photo by Samih Eloubeidi.

A few months ago, I was sent to the United Nations as an Official Rapporteur to the 12th Session of the Conference of State Parties to the Convention on the Rights of Persons with Disabilities (COSP). The theme of this year’s COSP was implementing the Convention on the Rights of Persons with Disabilities (CRPD) to ensure the inclusion of persons with disabilities (PWD) in society. While at the conference, I attended several side events that highlighted how different NGOs, companies, and organizations have made efforts to include PWD in all facets of society. Furthermore, I had the opportunity to transcribe the General Debate and Round Table Three Discussion of the General Assembly, both of which focused specifically on the inclusion of PWD in society through participation in cultural life, recreation, leisure, and sport. For this blog post, though, I want to focus on two of the side events I attended, because I believe that the personal lessons they taught me were the most valuable lessons I learned at the conference.

The first side event I attended detailed how artificial intelligence (AI) and other technology can be used to increase the inclusion, participation, and independence of PWD. Many of the panelists noted that while AI can help PWD, it can also be an obstacle that further perpetuates the societal exclusion of PWD. In response to this point, Megan Lowery, the representative for Microsoft, highlighted the importance of including PWD in the creation and dissemination of technology, noting that their input is indispensable for ensuring that the AI is in fact facilitating PWD’s inclusion and participation. As a testament to this, Alejandro Moledo from the European Disability Forum (EDF) detailed “Plug and Pray?”, a report created by the EDF to provide a perspective from PWD on emerging technologies. The report highlights the concerns and risks PWD have about these technologies and provides partial recommendations to policy makers and AI creators.

The second side event I attended focused on deinstitutionalization in the Arab region to support the inclusion and independence of PWD. As a Middle Easterner myself, I was particularly excited about this panel and the insights it would provide. Her Excellency Haifa Abu Ghazaleh and Her Excellency Ghada Wali both detailed that institutions should be made to provide health care, educational opportunities, and other resources for PWD rather than just being institutions where PWD are placed. In this way, PWD would have systems of support that would allow them to live independently while also giving them access to opportunities that could increase their inclusion in society. The discussion was opened to the panelists, all of whom were PWD; Mr. Ibrahim Abdullah, Mr. Mohammed Lotfy, and Mr. Muhannad Alazzeh. Mr. Abdullah stated that he is supportive of deinstitutionalization due to the fact that institutions isolate children with disabilities from their communities, while both Mr. Lotfy and Mr. Alazzeh supported transforming the institutions into support systems for PWD.

While these events were incredibly informative, it is not the information alone that has stuck with me. As I watched the panelists and speakers share their thoughts, the phrase, “a seat at the table”, continuously came to mind; the panelists and speakers at both side events I detailed were PWD discussing issues that PWD face. To me, this is what true representation is supposed to look like. When dealing with issues pertaining to any minority group, the people from that minority group should be responsible for leading the discourse. It is upsetting to see, then, that many people try to lead discourse when the discourse is not theirs to lead. Being well versed on the plight and issues that other minority groups face does not and should not make allies feel as though we can adequately address these issues. It is true that all minorities face struggle, but that is the extent of the commonality between us; every minority faces struggles differently, and we cannot assume that our own struggles are similar to, or even on the same level as, the struggles others face. After being at the conference, I realized that sometimes I too try to be a voice for others. However, I understand now that when it comes to discourse pertaining to other minorities, my voice is solely meant to be used to support, rather than to supplant, their voices.

From this, I also learned what it means to truly be an ally. An ally is someone who stands on the periphery of the aforementioned table, allowing the ones whose issues are being discussed to be the ones claiming the seats. However, as allies, we cannot be selective on which tables we stand on the periphery of, and this is where the conference revealed a major fault in my being an ally. I pride myself on being an adherent to intersectionality, so I was disappointed in myself when I realized that I have never included PWD within the realm of my discourse pertaining to minority rights. However, to be pro-black, pro-Muslim, pro-women, etc. is to be an advocate for the rights of PWD; these identities are not mutually exclusive. Thus, when I say that I am an adherent to intersectionality, I have a responsibility to include all minorities within this claim of adherence.

I believe that for any internal growth to occur, we need to be challenged. Without being challenged, our thought processes and views of life are static, hindering us from moving forward and evolving into better versions of ourselves. I am grateful to the IHR and Dr. Reuter for giving me the opportunity to attend the COSP, for without this experience, I do not think I would have had these faults revealed to me as clearly as they were. As I move forward, I will carry these lessons with me and continue working on bettering myself as both a person and an ally.

The Dynamics of Member States

Photo by Joseph Abua

The United Nations held its 12th Session of the Conference of States Parties to the Convention on the Rights of Persons with Disability, CRPD, between 11th to 13th June 2019. I recently got a graduate assistantship position with the Institute of Human Rights UAB and I was selected as one of the rapporteurs from the institute to attend this prestigious event. Despite being new to the institute, I could not have asked for a better start than going to the United Nations Headquarters, not as a visitor, but a note taker in one of the round table discussions of member states. Although on several occasions, I have always dreamed of visiting the UN Headquarters, yet, I never imagined I would be graced with such an opportunity to experience the spectacle and majesty of the UN as a rapporteur. This has made me realize there is never a dream too big to achieve as all we need to make it a reality lies in our will. 

The United Nations serves as an international framework where the world comes together to identify various challenges, share resolutive ideas, discuss developmental strategies and initiatives, and form stronger alliances. The Conference of State Parties to the Convention on the Rights of Persons with Disability serves as one of the platforms that ensure the needs of Persons with Disability (PWD) are adequately met and catered for. This year’s theme focused on improving and increasing accessibility and inclusion of persons with disabilities into all spheres of the society by ensuring utmost respect to the rights of PWD at all levels. Recent evidence suggests that by developing new and improving existing technological, digitized and ICT oriented innovations, it will better aid and assist PWD and increase their accessibility. Another fundamental area involves promoting social inclusion for PWD, by ensuring their access to the highest level of healthcare services and extensive participation in the cultural life, recreation, leisure, and sporting activities within the society.

Coming from a third-world region, Africa remains in constant need of evidence-based initiatives and mechanisms that will aid her in achieving sustainable growth and development at all levels. Over the years, the continent has continuously experienced several cases of inefficiencies at all levels, with little or no evidence of improvement being recorded. One issue that constitutes a major area of concern is the rights of Persons with Disability. PWD are faced with the worst situations you can ever imagine in most African communities. Despite the strong traditional and cultural heritage Africa possesses which constitutes part of the continent’s beauty and charm, it also serves as a curse especially to PWD. There exist different myths, beliefs, customs and misconceptions that negatively affect PWD till date because some traditions and beliefs cannot be abolished. In some cultures, families with PWD (blind, deaf, dumb and cripple most especially) often use their disability as an avenue to beg for alms, while in other cultures, families with PWD are believed to be cursed by the gods or unfortunate which often leads to the entire family being discriminated and treated as outcasts in the community. Other cultures consider specific disabilities such as cripples and hunchbacks, as items for rituals and sacrifices of all sorts.

Photo by Joseph Abua

Although several steps have been taken by various African governments to eradicate these ridiculous myths and beliefs, more needs to be done in ensuring PWD live normal and meaningful lives like others. One major area of concern that limits PWD in Africa is the poor social and political accessibility and inclusion. During the 3rd round table discussion, several member states discussed anticipated and already existing initiatives and programs that will/already include PWDs, and how they plan to sustain such developments. A few that caught my attention was the discussion by the representative of Zambia, Honorable Olipa Makiloni Phiri Mwansa, who spoke about new legislation known as the Zambia Disability Act which assists the nation to develop in-depth demographic characteristics of PWD. The Sri Lanka representative, His Excellence, Dr. Rohan Perera, spoke about the level the nation has gone in ensuring the successful implementation of the National Human Rights Action Plan for PWD by embedding the “Foundation for Inclusion of PWD” into the nation’s constitution. Morocco’s representative, Ambassador Omar Hilale on the other hand, discussed a framework already being implemented, which strictly focuses on providing vocational training for PWD in vulnerable communities to increase their social inclusion. One nation that has fundamentally developed its accessibility and inclusion rate in Mexico. Her representative discussed the 2018 general elections which were considered the most inclusive election in the country’s history as it ensured PWD had easy access to polling units and were also among the electoral officials during the entire election process. 

In terms of challenges faced by some member states, the Republic of Ireland representative gave an extensive remark about how several nation-states government and public sector is not adequately and structurally designed to meet the needs and demands of PWD and such inefficiency issues need to be addressed by the UN. Also, the first panelist, Ms. Tytti Matsinen (Disability Inclusion Adviser, Finland), spoke about how several communities presently have poor access to standard technologies which further increases the marginalization of PWD. She advocates that individuals, agencies, and organizations who are outside the job market be integrated into making assistive technological innovations for PWD more available and accessible. Finally, the Association for Deaf People (NGO) elaborated the need for parties and agencies to collaborate with PWD when developing technological and ICT programs and products because they possess a good degree of knowledge of their condition. 

This Conference made me understand how much effort the United Nation renders in ensuring member states achieve their desired growth at all levels, but more needs to be done in ensuring certain developmental policies, initiatives, and action plans are efficiently carried out by her members. The CRPD Committee representative spoke about how several member states failed to adopt the Public Procurement Policy which was structured at all levels to achieve greater accessibility standard for PWD. Although he condemned the attitudes of such states, he advised the UN to put in biding sanctions to member states that fail in this regard. At the close of the session, there was a resounding echo of relief by representatives of all member states, each having given meaningful insights and recommendations to various challenges faced at national and international levels. 

I am fortunate to have been selected to attend the conference, especially as a rapporteur in one of the round table sessions alongside several other side events which I may write about in subsequent blogs. Based on my love for policy and advocacy, it truly was a learning process and a developmental experience for me and I would like to appreciate the wonderful Dr. Tina Reuter and the Institute of Human Rights, UAB, for giving me this opportunity to see the world at large. I really had a wonderful experience and I am looking forward to many more field trips as this, and I will always be open in assisting and representing the institute at all levels.

Disability Advocacy and Technology in the 21st Century

Images of The Gang of 19 and “Capitol Crawl” will forever be remembered as pivotal moments in the U.S. disability rights movement alongside international achievements such as the first Paralympic Games in Rome, African Decade of Disabled People, and UN Convention on Rights of Persons with Disabilities. There are those who foster the value-based assumption that picketing, chanting, and public fervor are the appropriate methods to fighting the good fight. However, as digitalization rapidly enters our homes, schools, and places of work, modern technology offers a myriad of new ways to advocate for the rights of people with disabilities, namely social networking platforms and phone apps.

Many of those who engage with social networking platforms have heard of social media subcultures such as Asian-American Twitter, Black Twitter, and Feminist Twitter. These digital subcultures often address sociocultural issues related to their communities and galvanize captivating hashtags, like #BeingAsian, #BlackLivesMatter, and #MeToo, that take the mainstream media by storm. Among, and often intersecting with, these social causes is a growing phenomenon that could be referred to as Disability Twitter. Here, disabled activists share individual narratives coupled with hashtags, such as #AbledsAreExhausting, #DisabledAndCute, and #ThisIsAbleism, as well as address cultural, social, and political issues affecting the disability community through sentiments like #CripTheVote (accessible voting), #DisabilityTooWhite (limited representation of people of color with disabilities), and #SuckItAbleism (plastic straw ban). Such efforts have also been extended to social media platforms such as Facebook and Instagram, further capturing the attention of disability rights to internet users worldwide, generating dialogue and solutions that relate to accessibility.

smartphone. Source: pixabay.com, Creative Commons

With two-thirds of the globe connected by a mobile device, usage of phone apps has become the norm for many people. While many people use such apps for daily tasks and leisure, others utilize these platforms to amplify justice-related causes, namely access for people with disabilities. For example, Wheelmap is a service that allows users to locate and mark accessible places in seven languages. One does so by rating a respective space with a traffic light system that indicates green markings are wheelchair accessible, yellow markings have restricted wheelchair access, and red markings are not wheelchair accessible. Voice of Specially Abled People (VOSAP) is an India-based organization who created a phone app with the same name which crowdsources accessibility data so it can be used to inform community leaders and promote awareness. VOSAP also allows users to make an action pledge that supports people with disabilities so communities can correspond with allied parties. Parking Mobility is another phone app that offers a self-reporting mechanism, although this service allows users to report abuse of accessible parking spots. For partnering communities, such reports are forwarded to local law enforcement and citations are mailed to the registrant of the vehicle. Please contact Parking Mobility to inquire about getting your community involved in this program. There are also many other phone apps designed for personal assistive use such as Be My Eyes (navigation for blind and visually impaired), RogerVoice (subtitled phone calls), Miracle Modus (self-relief for Autistic persons), and Medication Reminder (people with Alzheimer’s and dementia). As a result of these diverse phone apps, there are multiple ways for people to self-advocate as well as spread information about accessibility.

As demonstrated, social media and digital technology have engendered revolutionary ways to address issues salient to the disability community, allowing self-advocates and allies to communicate about current challenges, successes, and resources. Therefore, simply opening your computer, tablet, or phone to navigate these issues, alongside other intersecting causes, shines a brighter light on the importance of disability rights, access, and representation in the 21st century.

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

Disability Rights: A Personal Perspective

* This is a repost from summer 2017

Myself signing for my sorority in front of a section of member nation flags on our last day at the United Nations.

“The purpose of the present Convention is to promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity.” When I was hired by the UAB Institute for Human Rights, I never dreamed that we would take the trip to the United Nations for the 10th Convention of States Parties on the Convention on the Rights of Persons with Disabilities. Visiting the United Nations has always been a dream for me, but being able to take part in an international effort to promote disability rights was an unbelievable opportunity to me personally.

Disability has always intersected my life. My sister and I were born with Ehlers-Danlos Syndrome, which is basically a fancy way of saying that all the connective tissue in our bodies are about as stable as a limp noodle. Because of EDS, chronic pain is just a part of my life. I am unable to run, walk, or jump without a joint in my body threatening to dislocate. I suffer from sleep disorders and chronic fatigue along with a host of gastrointestinal issues. It also affects my heart and my autonomic nervous system; I tend to feel like a walking time bomb of anxiety, heart palpitations, and general malaise all wrapped up in a spaghetti-based body. I have lived my whole life without complaining for the most part. Most people in my life don’t know the extent of my disability, or even about it at all. I keep my pain hidden because I do not want anyone’s pity. I continue physically far beyond what my body’s real limits are because I do not want people to think I am lazy or helpless. It takes too much time to explain my disability to everyone I meet, so I deal with my pain with a smile on my face. This is the reality that most people with disabilities face—a life of “oh, I’m so sorry for you!” when they learn of your disability and “why can’t you do this?” when they do not understand your limits. My struggle as a woman with a disability is the reason why the Convention meant so much to me. Before the Convention, I had never in my life been around more than two people with disabilities or ever felt like anyone truly understood what I was going through. Seeing so many other people with disabilities raising their voices, sharing their pain and suffering, and demanding change gave me hope that one day I will no longer feel like I need to hide my disability.

Photo of the team at lunch at the United Nations.
Photo of the team at lunch at the United Nations.

I have always known that having a disability does not mean you cannot be strong and independent. Not being able to walk for long periods does not make me lazy, and my joint instability does not make me weak. I know these things, but sometimes the able-bodied world undermines these beliefs and makes me feel like I will never be good enough. The champions of disability rights who I met gave me such courage to fight those fears. The utter strength and bravery of these people were so encouraging to someone like me. I could see myself in Daniela Bas, the head of DESA and wheelchair user. Ms. Bas has managed to overcome so many obstacles as a woman with a disability yet constantly dazzles people with her charismatic personality and fierce intellect. Ms. Bas gave her knowledge on the importance of international cooperation in dismantling the cross-cutting barriers faced by women with disabilities. Her policy-based approach and political science background gave me hope that one day I could follow in her footsteps. Ms. Mia Farah, of the Lebanese Association for Self-Advocacy, gave me such encouragement from her passion, skills, and independence as a woman with Down Syndrome. Ms. Farah organized one of the most enjoyable and successful side events I attended, despite the challenges that her intellectual disability can bring. Her story of her successes resonated with me because I have always feared my limitations. Mia Farah showed me that limitations that others place on you because of your disability don’t have to define you.

I not only found inspiration during my time at the UN but a wealth of new knowledge as well. Every individual gave new insight on disability rights that I had never considered before. Natalie Draisin spoke on road safety for women and girls with disabilities, and how unsafe roads and transportation can be fatal—an important issue that many ignore when discussing disability rights. I was touched by the story of Flavia Cintra, a Brazilian journalist, whose doctor told her to abort because he believed that tetraplegics should never have children. Ms. Cintra shared how Brazilian mothers with disabilities often lose custody of their children and have their reproductive rights stolen from them through deceptive paperwork. Some wedding officiators even refuse to marry people paralyzed below the waist because they are believed to be unable to bear children. I never knew any of these issues before speaking with Ms. Cintra. As a reproductive rights activist, Ms. Cintra’s story made me understand the importance of including people with disabilities in our activism. All of the stories and experiences that were shared with me hit deeply and gave me such insight into international policies on disability rights.

Audience view during the side event by IHR and IDPPS teams’ “Making Disability Rights Real: Implementing the CRPD through Regional Cooperation with Lessons Learned from ASEAN.”
Audience view during the side event by IHR and IDPPS teams’ “Making Disability Rights Real: Implementing the CRPD through Regional Cooperation with Lessons Learned from ASEAN.”

The global environment for people with disabilities is harsh, whether one is in Brooklyn, Bogota, or Bangkok. All over the world, people with disabilities deal with compound discrimination, lack of adequate healthcare, limited access to resources, sexual abuse and assault, and the negation of their independence.  Having this opportunity to partake in the implementation of policies on disability rights was genuinely life changing. Viewing the inner workings of the United Nations made me realize that I wanted to make a career in the international nonprofit organizations that work with the UN to effect change. It was incredible to see people from so many different places, all speaking in different languages. I could be listening to a speaker in Chinese, and put on a headset to have it translated live into French, Russian, English, and several more. Watching the sign language interpreters onstage during meetings was so thrilling— not only was it beautiful to watch, it also was critical in making the events accessible to the deaf and hard of hearing. These events made me realize how necessary sign language is to have a successful career in advocacy, because the inclusion of nonverbal people is vital. I will always look back on this trip to the United Nations as the moment when I found my calling. As I have always tried to ignore my disability, I had never realized until now how central disability rights are to my life. Being around such fearless role models brought to life a passion to fight for the rights of women and girls with disabilities around the world.

 

ADA: Civil Rights Legislation for All

* This is a repost from summer 2017

by ABBY ROSS

July 26 1990 ADA Signing Ceremony
July 26 1990, Signing of the Americans with Disabilities Act. Source: United Spinal Association

Today marks the 27th anniversary of the signing of the Americans with Disability Act (ADA). This was a truly groundbreaking piece of civil rights legislation that finally took permanent steps towards ensuring equality for all Americans. The ADA requires private and public entities to not discriminate against people with disabilities, and was crafted with the goal of integration in all aspects of society – employment, social settings, government, transportation, and beyond.

James Weisman, President & CEO of United Spinal Association – a nonprofit dedicated to enhancing the lives of people with spinal cord injury/disorder – has been a disability rights attorney for nearly forty years and had significant involvement in drafting portions of the Americans with Disabilities Act. He sued New York City as a young lawyer over inaccessible buses and subway stations. The implementation of mandatory bus lifts and key subway stations with elevators for wheelchair access were direct results of his lawsuit. This became the basis of the transportation sections of the ADA, and created a precedent across the country giving individuals with physical disabilities access to transportation and thus increasing independence.

Unbeknownst to Weisman, it was just the beginning of his advocacy work specifically related to transportation accessibility for wheelchair users. In the 1990s, United Spinal Association again brought litigation against the City of New York this time related to curb ramps – the corner of sidewalks that are altered to allow wheelchair users and parents with strollers to access the sidewalk from the street. The City was ordered to install ramps on all sidewalks and some twenty years later is still working to fully complete the project. He works on wheelchair accessibility in the taxi and transportation realms with companies like Uber and Lyft. With technology transforming transportation services, he remains committed to ensuring that accessibility is a priority from design to implementation across the transportation industry. Transportation is only a slice of the work that he has been involved in throughout the last forty years as disability rights truly extend to every aspect of an individual’s life. I wanted to hear his thoughts on this important anniversary, forty years of activism as well as reflections on today’s disability rights movement.

Senator Tom Harkin, ADA Sponsor & James Weisman at the NYC ADA25 Disability Pride Parade. Source: United Spinal Association

AR: What is the connection between disability rights and human rights?

JW: Disability rights has always been the bastard child of the rights movement. There is no real “ism” attached. Ableism is the closest thing but that is not definitive. Disability is in every group. There is no country, population or demographic that doesn’t include people with disabilities yet they still can face the hallmark issues of human rights discrimination. Poverty, isolation, inadequate healthcare, underemployment and exclusion are all barriers to independence and equality. People with disabilities face these issues day in and day out.

AR: Where do you see disability rights discussions and action moving in the future?

JW: For a few years, we were making significant progress across the board but with the new administration, we are back to basic rights. Now, the choice to live in the disability community is gravely threatened. Funding for support services that would allow people with disabilities to live independently, work, go to school, shop, go to the movies – live a “normal” life – is being slashed and the impact is tremendous. The proposed changes to healthcare would also have a dramatic effect on quality of life, self-sufficiency and frankly, life expectancy for severely disabled individuals. Simply staying alive is becoming a goal of advocacy again.

Apart from these issues of the day, which will likely always be present in some form, mental health stigma is the next biggest issue and will take the most work to overcome. The complexity of diagnoses and treatments paired with the lack of education and familiarity has created enormous barriers and misunderstanding.

And of course, transportation is always an issue. Innovation must include accessibility. Every new modality should be accessible from inception. – in 2017 it is ridiculous to even consider developing technology that wouldn’t include everyone and consider an aging population in design.

AR: Where have you seen the most progress in disability rights in the last 27 years?

JW: Without a doubt, it is the built environment. Physical accessibility is the easiest to measure, quantify, regulate and learn how to fix. There have been amazing advancements in what is considered normal in terms of building design and features. Automatic entries, lever style door handles, accessible restroom stalls – all things many people don’t even notice but are essential for wheelchair users and others with mobility impairments.

James Weisman and Ian Ruder at United Spinal’s Roll on Capitol Hill Advocacy Event, 2012. Source: United Spinal Association

AR: In your opinion, what is missing from the movement?

JW: Collective identity with the rest of the country. People with disabilities are a tremendous minority group but generally not understood or engaged in the same respect that the able-bodied public is in terms of employment, education, media, advertisers, athletics, etc. Society seems to perpetually need to be re-educated about disability. The image of people with disabilities used to range from heroic to pathetic – that has changed and I believe now ranges from needy to competent but continues to be somewhat one dimensional. For instance, the wheelchair user who is the leading man’s best friend but not the leading man. One in five Americans have a disability. – We all have a friend, uncle, neighbor or colleague with a disability that we consider “our disabled guy” – we know they operate in the world, go to work, school, church, buy groceries and socialize but somehow our personal experiences are not extrapolated out to our experiences with the greater disability community.

To some degree we are missing the next generation of disability rights leaders. Many of my colleagues have been involved in these battles for thirty years or longer when the fights were about the basics – access to buildings, transportation, education. Fortunately, we have progressed since then to more sophisticated issues but there are still barriers on many fronts. The next generation of leaders will need to understand the history of the movement, the landscape of the challenges and the best possible outcomes for the disability community. We have so many bright individuals, disabled and able-bodied, that are doing wonderful work around the country – I am sure that the disability rights movement will be in good hands.

AR: What lessons have you learned in your decades of disability activism?

JW: Good ideas eventually come to fruition. It just takes time. You must keep them on the table, keep talking, keep pushing. Nothing changes if you don’t push. That often means you lose and it is one step forward three steps back but I’ve seen dramatic change in a relatively short time so I know it can happen.

Bias goes away if you expose it. Again, not necessary quickly and not completely, but every little bit helps.

I’ve found that it is extremely rewarding to be a part of this community and social fabric. I have developed extremely meaningful relationships through my work in disability rights. It is a very effect way to mature as a person – to understand the grand scale of the movement and issues as well as the microcosm of individual struggles and concerns.

AR: Finally, why should disability rights matter to every American?

JW: Dependence is expensive. Way more expensive than independence. Dependence is person specific and labor intensive whereas independence often requires only one-time investments. Motorized wheelchairs, building alterations and other assistive technologies certainly aren’t cheap but are essential tools for personal liberty.  The goal of the Americans with Disabilities Act and the goal of all the work that we do around rights is simple – to give opportunity. I always say that the greatest opera ever written or the cure for cancer or other remarkable achievements may be locked in the head of an individual with disabilities who without the services, tools and right to independence will never have the opportunities they deserve to share, create and succeed. Do we want to pay to take care of everyone when the alternative – increasing access to education, employment and opportunities is by far the better alternative?

Disability rights are human rights. People with disabilities are individuals of all ages and backgrounds who are striving to be independent and active participants in society. They are moms, colleagues, wounded warriors, uncles, kids with big dreams, best friends and neighbors. They have families, jobs, hobbies, likes and dislikes and problems and joys. While the disability is an integral part of who they are, it alone does not define them.

 

Abby Ross is the Chief Operating Officer of United Spinal Association headquartered in NYC.

James Weisman was the General Counsel of United Spinal Association for 35 years prior to becoming President & CEO in 2015.