Movies such as Blade Runner, IRobot, or the Matrix portray a futuristic ambiance in regard to artificial intelligence overpowering humanity. At first glance, these movies can seem unrealistic and a bit absurd. However, in recent years, it appears to be less ridiculous as it hints at a bit of truth. There is no doubt that technology has advanced at a rapid speed in the last ten years. As each year passes, it seems there is a new device or software that can somehow make your life easier. Technology is used in every aspect of our life – from our homes to our work to the stores we visit. Often times, it can seem inescapable. If you turn your attention to your surroundings, you are likely to see people on their phones or computers – whether they are searching the Internet, looking through Instagram, or sending a text.
It is alarming to consider how technology affects every aspect of our lives. It even influences human rights such as the right to privacy or freedom of expression. There are numerous concerns that people have about the role and impact of artificial intelligence. People are concerned about the rise of “machine autonomy” and how gradually it can diminish “the status of humans”. Furthermore, there are concerns on the use of artificial intelligence in terms of “unjust and unequal political, military, economic and social contexts.”
Google is not the only company that has dealt with controversy in terms of technology and how it affects people’s human rights. A data firm by the name of Cambridge Analytica was caught using data from Facebook in order to build voter profiles. Employees acquired private Facebook data of millions of users, then they sold the information to political campaigns.
Freedom of Expression. Source: Flickr, Creative Commons
Human Rights China. Source: Wikimedia, Creative Commons
As the debate for technology and AI continues, the Human Rights Watch aims to ban developing and using these killer robots. However this technology is nothing new – the focus is on how, when, and why individuals should or should not use them. Furthermore, the question of human intervention arises. While using DNA collection in certain circumstances, such as finding criminals, can be beneficial, there poses a question of how people use the date and if it infringes on our human rights. The numerous databases worldwide have no common structure among themselves. Thus, there are concerns on how countries obtain the data and whom they share the information with. The DNA database can trace anyone through “biological tagging”, even those who innocent or have no relation in regards to the crime in question. Other possible challenges could include how the information is kept and used. For example, when determining whether or not an individual is a good fit for a job the hiring company could access the data and that affects the individual’s rights. Furthermore, the data could be used by criminal organizations. Both killer robots and DNA collection have benefits such as solving more crimes and military advances; however, it ultimately challenges the principle of privacy.
Improving Experiences of Time in Prison and Their Outcomes
Many of the aspects of the First Step Act are geared towards decreasing recidivism (people returning to criminal behavior after being released from prison) through opportunities and resources that help prepare people for their lives after incarceration. For example, the bill creates strong incentives to encourage prisoners to participate in preparative programs that are available to them. For every 30 days of “successful participation,” individuals can receive 10 days of prerelease custody, where they are transferred to halfway houses or home confinement. Incentives can also include increased phone and visitation privileges, access to email, increased commissary spending, and other requested incentives.
The bill also designates $250 million to be used over five years by the Federal Bureau of Prisons (BOP) to expand and develop skill-building classes and vocational training opportunities. It also allows the BOP to work with outside organizations that can provide such classes. According to the First Step Act, prisoners who are at a medium or high risk of recidivism are to be prioritized for receiving these opportunities, as well as counseling and treatment. Before leaving federal prison, all are to receive their ID, allowing people to re-enter society more quickly and avoid “collateral consequences of incarceration.”
In order to make it less difficult for families to visit, the bill states that people should not be placed in prisons that are more than “500 driving miles” away from their families. This improves their ability to maintain ties with their relatives, which can improve their quality of life while incarcerated and make the process of reintegration into society easier afterwards. With the help of a strong support system and the tools needed to find work, released prisoners have a better chance of finding their place in their communities and not being reincarcerated later.
Decreasing the Population Actually in Prison
There are some aspects of the First Step Act that help to decrease the population of people in prison. Increases the number of days of good time credit, which is earned through good behavior, from 47 to 54 days per year. This change also applies to everyone in federal prisons who has already earned good time credit. It is estimated that this change will save $40 million in the first year. Additionally, the bill required the BOP to transfer prisoners that are considered low/minimum risk to prerelease custody and expanded compassion release. Eligibility for the elderly offender program of compassion release now starts at age 60 instead of 65, the minimum portion of one’s sentence that must be served has been decreased from 75% to 66.7%, and the program is now available in all prisons.
Views of the Purpose of Prison
One’s understanding of the importance of legislation like the First Step Act can be significantly impacted by their perspective on the purposes of prisons. Some people believe that prisons should be used to achieve retributive justice, where the main purpose is to punish criminals for their wrong-doings and to have them suffer for their action. For someone who believes in retributive justice, the changes made by the First Step Act may not seem so important.
Alternatively, other people believe that the incarceration system should be used to rehabilitate prisoners and prepare them to re-enter society as individuals who can make more positive contributions to their community and avoid taking actions that would lead them back to imprisonment. When you look at the First Step Act from this point of view, it is easy to see why the bill’s intended impacts are so significant. It gives people a chance to learn from their mistakes and helps them become more productive members of society.
p1000578.jpg. Source: David Johnson, Creative Commons
The intended outcomes of the First Step Act can improve the access to human rights of people who have been incarcerated. As it is said in the UN’s Basic Principles for the Treatment of Prisoners, prisoners are entitled to all the rights that are declared in the UDHR and other human rights documents and should have access to resources that can aid their ability to successfully rejoin society. Decreasing rates of recidivism, as the actions of the First Step Act hopefully will, helps to lower the number of people in prison overall. This allows for a change in the allocation of funds to take better care of people living in prisons, giving them greater access to their human rights. People living in prisons are human beings just like everyone else and should not be treated as anything less.
2 tax return forms, a 2018 tax return form and 2017 tax return form, black glasses and a calculator. Source: DPP Business And Tax https://www.dpp-businesstax.com/, Creative Commons
For most adults in the United States, the year starts with the tax season. During this time, they have their tax returns prepared and filed and either pay any taxes they owe or receive a refund if they overpaid their taxes throughout the prior year. This year, the tax season began on January 28 and continues until April 15. There are a few different ways one can go about filing their tax return. One way is to purchase an IRS-approved tax preparation software, like TurboTax or TaxSlayer, and file their return on their own. One could also prepare their return manually, but the IRS prefers that people file electronically to decrease potential errors. The last method is to seek out the help of a professional through a commercial tax preparation organization or a non-profit one. Commercial organizations often take advantage of the low-income filers whose returns they prepare and who often qualify for the Earned Income Tax Credit, which results in a larger refund.
In order to increase their profit, they put a great deal of effort into publicizing their services in a way that overshadows the far less expensive, sometimes even free, methods of filing tax returns. Paul Weinstein, who co-authored a study on tax preparers with the Brookings Institution and the Progressive Policy Institute, suggests that most taxpayers could “have their taxes prepared for less than $100.” According to Weinstein, tax-filers spend an average of $275 on the preparation of their taxes during the filing season. The authors of the study found that individuals filing for the EITC spent $309 in Washington D.C. and $509 in Baltimore. This means that these individuals were spending between 13 and 21 percent of their return to cover the cost of tax-preparation.
There has also been evidence that suggests that individuals who qualify for the EITC and file through professional tax-preparers are more likely to have errors in their tax return than those who do not qualify for the EITC. According to an investigation by the Government Accountability Office in 2015, about 60% of all professionally prepared taxes had errors, while between 89% and 94% of filers who qualified for the EITC had errors in their professionally prepared taxes. This is a problem of significant concern, since people with low incomes are more likely to be audited by the IRS. For people who receive the EITC, this could result in their refund being withheld until the end of the auditing process.
Predatory tax-prep organizations may often go unnoticed, but many are recognized and forced to face the legal repercussions of their actions. For example, Laquinta Q. Fisher of Lawton, Oklahoma was found guilty of a tax fraud scheme on January 24, 2017. After lying to her clients and telling them that they could receive a refund for simply having a dependent child, she added fake income and fake dependents to their returns to increase their EIC. She “was sentenced to 18 months in prison, three years of supervised release, and ordered to pay $133,955 in restitution to the IRS…”
Earned income tax credit stock photo. Source: Simon Cunningham, Creative Commons
It is also possible that such an organization would have false credentials. Every tax preparer is legally required to have a Preparer Tax Identification Number (PTIN). The IRS has a directory of PTINs that can be used to look up a preparer with their name and location. The PTIN can tell you if the preparer is “a certified public accountant, enrolled agent or a lawyer.” It is also important to note that the directory does not prove that a preparer is qualified. It is also a red flag if an organization suggests that they are endorsed by the IRS, as the IRS does not endorse any tax preparers.
Another warning sign is if a preparer does their work in “temporary pop-up shops” that will be gone after the tax season ends. In that case, there is no office for you to go to if any problems arise with your tax return. It is a red flag if the preparer says that they will deposit you refunded into their bank account or asks you to sign a return that is incomplete.
Why IsThis A Human Rights Issue?
In addition to being ethically questionable, the actions of commercial organizations that prey on low-income households also have the potential to negatively impact people’s access to their human rights. For many people who are targeted by these organizations, every single dollar counts. Every penny of the tax refund they receive is used to pay for the necessities, like food, water, power, rent, and clothing. According to Article 25 of the United Nations’ Universal Declaration of Human Rights, “Everyone has the right to a standard of living adequate for the health and well-being of himself and of his family, including food, clothing, housing and medical care and necessary social services…” Many households rely on the refund they receive to access this right. It is important that we spread awareness of this issue so we can prevent as many people as possible from being exploited by tax-prep organizations and connect them with the resources they need.
Impact America: SaveFirst
Impact America, originally Impact Alabama, is a non-profit organization that was founded to develop “substantive service-learning and leadership development projects for college students and recent college graduates.”SaveFirst is one of Impact America’s programs, which provides free tax preparation services in communities which are often targeted by predatory tax-prep organizations. College students who volunteer with SaveFirst are trained and IRS certified to prepare tax returns. In 2018 alone, SaveFirst was able to prepare tax returns for 13,713 families and saved those families $5.5 million in fees. Since 2007, they have prepared returns for 76,867 families and saved them $26.2 million. The work done by Impact America helps to decrease the number of people that are being exploited by predatory organizations by giving them access to much better resources and services.
If you are interested in scheduling an appointment with SaveFirst at one of their many tax-prep locations, you can do so here.
*Author’s note: I am aware of discourse on person-first language (people with disabilities) versus identity-first language (disabled people). I identify as disabled (chronic illness is a form of disability) and personally prefer identity-first over person-first, but I will use both forms in this blog as to avoid repetition.
“Classroom scene with teacher Kate Hobart showing students how to use mirrors to assist speech-learning.” 1893, Horace Mann School for the Deaf. Source: Boston City Archives, Creative Commons.
The history of disability is asymmetrical. We know that history is always written by those with the power to wield the pen, and the powerful have always trodden on disabled people*. This is why history has most commonly staged people with disabilities as passive subjects — voiceless patients, preserved in history as miserable recipients of medical treatments, cures, and operations. Before the acknowledgement of dis/ability as a socially constructed identity much like gender or race, the dominant framework was the medical model. Impairments were seen from a medical standpoint as afflictions to remove, and “disability history” is full of famed doctors who found apparent solutions to bodily deviance. [Read more about the difference in the medical and social models in this post by graduate student and IHR intern Shane Burns!]
Disability scholars, in the past few decades, have begun to reclaim disabled narratives and frame them in ways that empower and enrich the social matrix of ability.
Like African American revisionists, we strive to reevaluate history with an additional, more critical lens. Before critical race scholars/theorists reasserted historic perspectives to reveal deep-seated racism (alongside the influential Civil Rights and Black Power movements), American society accepted racial discrimination as a fact of life. Ableism can be subverted in a similar way. Modern principles of universal justice and equity equip us to destroy structural injustice wherever it lurks within the depths of unchallenged social praxis. Additionally, revisionism – in disability history, Black history, LGBTQ history, etc. – grants the option to see historically oppressed groups as agents of change rather than sufferers of fate. Obviously, the lingering trauma experienced by oppressed identities cannot be ignored, and it would be detrimental to assume that the same forces of oppression no longer exist. But viewing disabled people as individuals with power, richness, and complexity is an empowering perspective.
“Stella Young with Ann Cody.” Source: Exchanges Photos, Creative Commons. [Watch Stella Young’s phenomenal TED talk, “I’m not your inspiration, thank you very much,” here.]In that spirit, this blog will give a brief overview of the disability rights movement, and will highlight some overlooked historical perspectives of persons with disabilities. I will condense the obligatory section detailing the terrible harms suffered by people with disabilities over the centuries : subjugation, abuse, isolation, eugenic extermination, etc. Disabled people have suffered in a wide range of circumstances and continue to suffer today from a toxic mixture of economic, social, political, and cultural barriers. It’s exhausting and demoralizing to read about these things as a disabled person. It also encourages unneeded pity from non-disabled people. Though pity may come from good intentions, it only reinforces dehumanizing attitudes. These attitudes replicate through supposedly innocent interactions like “oh, you poor thing,” and “if I were you, I’d just want to die! I can’t believe you do it!” These sentiments are fairly common reactions from non-disabled people, and they are often said with emphatic sympathy. Yet these are the same attitudes that have stolen agency from disabled people, used their life struggles as perverted inspiration, and used as an excuse to suppress, subject, torture, and extinguish people with disabilities.
Ableism, like many other “isms,” is bound and sustained through micro-level interactions rooted in unconscious yet detrimental assumptions. If you are a non-disabled person, I urge you to reflect before you react to disabled narratives, and consider how your assumptions have been informed by bias. Be sure to actively listen with compassion, react with empathy instead of pity, and always practice validation. It’s okay to have questions, and it’s okay to feel uncomfortable. Sit with your discomfort. Explore it. Decide to challenge it, and you may find yourself with a new perspective.
“Disabled people protest outside St Mary’s House, Norwich.” Source: Roger Blackwell, Creative Commons.
The Disability Rights Movement
“People with disabilities have been socially dispersed and have lacked both a common identity and the economic and political resources to coalesce into an active and effective movement capable of political action. A rights-oriented consciousness and an adequate organizational apparatus have both been essential to creating the disability rights movement.” – Scotch (1989, p. 4).
In other words, the disability rights movement required a) the collective understanding that disabled people as a group deserved rights and b) the resources to organize and motivate that group effectively.
This effort began to gather momentum in the 1960s, inspired by the grassroots activism of the time (another significant nod to the Civil Rights & Black Power movements). The early disability rights movement also benefited from community programs for disabled people, such as disabled student programs on college campuses. These programs were meant to provide services for people with disabilities, but they also inadvertently connected disabled people.
This was a radical change in society. Most disabled people were physically and socially isolated from one another prior to this movement — individuals with diverse impairments didn’t recognize each other under a “disabled” identity. This disconnect is caused by compounding issues. For instance, an epileptic person has a different set of struggles than a Deaf person or a wheelchair user. In other words, different impairments look and function differently, and it can be hard to conceptualize shared identity between such diverse experiences. Community spaces are often inaccessible, while home environments are isolating. In these situations (especially when surrounded by non-disabled caretakers/family) personal autonomy and dignity can be limited. Without opportunities to share narratives among peers, disabled people had no way of knowing the vast network who shared their experiences. But when this network began to develop, it became apparent that many of us feel the same pain. Together, we could investigate our experiences and find that they’re all rooted in the same institutional structures, harmful biases, and violent enforcement of so-called normalcy.
The first major assertion of collective disabled power came in the early 1970’s. Union of Physically Impaired Against Segregation (UPIAS) was a British group whose radical publications – including Fundamental Principles of Disability (1975) — formed the ideological foundations from which the social model of disability emerged in the early eighties. Penned by Mike Oliver, the social model pointed out that having a disability is not an impairment in itself, but that impairments are created by an inaccessible society. The impairment of poor vision would be disabling if glasses weren’t widely accessible. This shifted the entire paradigm of ability. Everyone experiences limitation and impairment, ability exists on a spectrum, and the social mechanisms that separate “abled” from “disabled” can be torn down. The suffering experienced by disabled people isn’t inherent and should not be accepted. Disabled people can celebrate their own existence, and can demand a better existence for themselves and their peers. Judy Heumann says it much better than I can:
“As long as you believe that your life is a tragedy, you can’t do very many good things with your life. Once you believe that the tragedy isn’t your fault, that it is the failure of the political system to acknowledge your rights as a human being, to be equal in society, that you can as an individual have a voice as part of a group, then you can make a difference.”
Disabled Perspectives in History
Historical records lack the perspective of most disabled people themselves, save for a notable few whose privilege awarded access to education and personal acclaim. Helen Keller was certainly not the first person to be born both Deaf and blind, but her family’s relative privilege granted Ms. Keller access to education and the social positioning to benefit from it. Helen Keller is an inspirational, barrier-breaking figure. That’s not up for debate. But it is noteworthy to mention that her privilege – having a well-connected white family with roots in Southern aristocracy – facilitated her success. Helen learned a variety of communication methods, including ASL, Braille, touch lip-reading, and speaking verbally. She attended college – a notable feat for any woman in her era – and went on to publish a dozen books, helped found several organizations (ACLU, American Foundation for the Blind, Helen Keller International), and even won an Oscar (Helen Keller International).
“Helen Keller taking a speech lesson from Annie Sullivan.” 1890-1895, Horace Mann School for the Deaf records. Source: City of Boston Archives, Collection 0420.047, Creative Commons.
Frida Kahlo is a famous Mexican artist and painter whose disabilities greatly impacted her work. The story of Kahlo’s trolley accident at age 18 is infamous, as well as the physical impact – a broken spine, broken pelvis, and a severe abdominal injury. Prior to this accident, she contracted polio at age 6, and is believed to have been born with spina bifida (Daunton). These experiences are well-known; Kahlo’s legacy has been tainted by pity and morbid fascination with her painful experiences. I believe she should be celebrated in a light that honors her experience. Not only was Kahlo a fierce, vibrant spirit with immense artistic talent, but she broke barriers for other disabled women of color. Kahlo embraced the unique, rich perspective that she had gained through dealing with years of pain, vulnerability, and isolation – channeling it into powerful art. Frida Kahlo unapologetically existed as a disabled woman of color, presenting her body in all its beautiful, sexual, and painful complexities.
“Frida Kahlo – Two Fridas (1939).” Source: Cea, Creative Commons.
Harriet Tubman is another extraordinary woman of color who was affected by disability. Tubman experienced a traumatic brain injury at age 12 at the hands of a slave owner. Tubman dealt with complications for the rest of her life including severe pain, seizures and/or narcoleptic episodes. Her disabilities may have contributed to her success, as Tubman’s narcoleptic trance-like episodes offered moments of great spiritual impact (Sabourin et al, 2016). A deeply religious woman, Harriet Tubman was guided by her faith to rescue hundreds of slaves over the course of thirteen incredibly dangerous escape missions. Tubman also is the first woman to plan and lead a military operation against the Confederacy – with stealth skills and knowledge of Southern geography, “General Tubman” conducted a successful raid on Combahee River that freed over 700 slaves (National Museum of African American History & Culture).
“Harriet Tubman (far left) with family and neighbors, circa 1887.” Source: Bettman/Corbis, Creative Commons.
Conclusion
The history of disability – as a movement, as individuals, as an identity – is rich, compelling, and intersectional. We should see it as an under-explored reserve of knowledge hidden by suppression, and a perspective to be treasured. Disability history demands to be re-examined and reclaimed in a framework of empowerment. It’s critical for incorporating disability rights into wider society. When you apply modern standards to historical events and figures, a narrative of agency and power can emerge. Simultaneously, it can reveal the despicable mechanisms that create, inform, and enforce oppression. As I said earlier — modern principles of universal justice and equity equip us to destroy structural injustice wherever it lurks within the depths of unchallenged social praxis.
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.
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.
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.
Avignon – Place de l’Horloge – Hotel de Ville – Liberte Egalite Fraternite. Source: Elliot Brown, Creative Commons
When human rights are being discussed, they are often divided up into three categories called generations. A reflection of the three generations of human rights can be seen in the popular phrase of the French Revolution: liberté, egalité, fraternité. These generations of human rights were first formally established by Karel Vasak, a Czech jurist, in 1979. This division of the types of human rights helps improve conversations about rights, especially those involving legislation and the role that governments play in human rights.
The First Generation: Liberté
The first generation of human rights encompasses an individual’s civil and political rights. First generation rights can be divided into two sub-categories. The first sub-category relates to norms of “physical and civil security.” This includes not committing acts of torture, slavery, or treating people inhumanely. The second sub-category relates to norms of “civil-political liberties or empowerments.” This includes rights such as freedom of religion and the right to political participation.
The second generation of human rights encompasses socio-economic rights. Second generation rights can also be divided into two sub-categories. The first sub-category relates to norms of the fulfillment of basic needs, such as nutrition and healthcare. The second sub-category relates to norms of the fulfillment of “economic needs.” This includes fair wages and sufficient standards of living.
Second generation rights are based on establishing equal conditions. They were often resisted by western nations during the Cold War, as they were perceived as “socialist notions.” The International Covenant on Economic, Social, and Cultural Rights and Articles 22 through 27 of the UDHR focus on these rights.
Prior to the fall of the Berlin Wall, first and second generation rights were considered to be divided by the responsibility they place on governments. First generation human rights were looked at as being a “negative obligation,” which means that they place a responsibility on governments to ensure that the fulfillment of those rights is not being impeded. Second generation human rights were viewed as being a “positive obligation,” which means that they place a responsibility on governments to actively ensure that those rights are in fact fulfilled. After the Berlin Wall fell, perspectives shifted to see governments as having the responsibility to “respect, protect, promote and fulfill” these rights.
The Third Generation: Fraternité
The third generation of human rights encompasses broad class rights. Third generation rights can be divided into sub-categories as well. The first sub-category relates to “the self-determination of peoples” and includes different aspects of community development and political status. The second sub-category is related to the rights of ethnic and religious minorities.
Third generation rights are often found in agreements that are classified as “soft law,” which means they are not legally binding. Some examples of these agreements include the UDHR and the 1992 Rio Declaration on Environment and Development. This generation of rights is challenged more often than the first and second generations, but it is being increasingly acknowledged on an international level. These rights started gaining acknowledgement as a result of “growing globalization and a heightened awareness of overlapping global concerns” such as extreme poverty.
Overall, recognizing the differences between each generation of rights can help us to better understand how broad the field of human rights is and how varied the issues involved truly are. Each kind of right is best fulfilled through the use of different forms of legislation, and recognizing the different generations of rights can improve our ability to identify the what type of legislation is best suited for dealing with a particular issue.
The Institute for Human Rights at UAB is proud to take part in theannual Human Rights Day today, December 10th. Today, the United Nations led the global celebration honoring the creation of the Universal Declaration of Human Rights and its subsequent influence on global affairs. This is the last post in our series on Human Rights Day, exploring possible next steps to protect, maintain, and expand human rights across the globe.
Looking Ahead: Third Generation Rights & Beyond
Human rights are broken into three generations: (Saito, 1996)
Civil & political, embodied by the UN’s International Covenant on Civil and Political Rights (ICCPR). These rights primarily protect the individual from government overreach, including the freedom of the press, right to ownership, and equality under the law.
Economic, social, & cultural, embodied by the UN’s International Covenant on Economic, Social, and Cultural Rights (ICESCR). These rights primarily ensure equality and equity of individuals in society, including the right to work, freedom of association, and right to an education.
Third Generation human rights relate to ‘solidarity’ and broadly represent the rights of collectives, expanding human rights beyond the individual (exemplified in Generations 1 and 2; Saito, 1996). However, unlike the previous two generations, Third Generation human rights do not have a corresponding UN Covenant or Declaration to codify or clarify what these rights specifically entail. At this point in time, Third Generation human rights include the right of people to self-determination, to peace, and to the environment (Cornescu, 2009). This last right, to the environment, is an interesting development. This shifts the focus of human rights beyond the present circumstance and expands the purview of human rights into future generations. If the human rights doctrine embraces this temporal expansion, what new rights may arise?
Bridge of Harbin Songhua river. Source: siyang xue, Creative Commons
Pushing forward the jurisdiction human into years beyond the present requires a futuristic approach to the human rights agenda, attempting to account for potential crises that may threaten the lives and livelihoods of humans of the future. Here are a few upcoming crises requiring the attention of the human rights community:
Climate Change. The US Global Change Research Program recently published the “Fourth National Climate Assessment”. This assessment urges policy-makers to take action to mitigate the effects of the global climate change crisis. If this crisis unfolds unchecked, marginalized populations (e.g. persons dealing with the consequences of poverty, indigenous groups, and so on) will first feel the brunt of climate change, followed by economic, health, and infrastructural catastrophe. The unwillingness to take immediate steps to curb the effects of climate change infringes of the human rights of global populations.
Artificial Intelligence (AI). Harvard Political Philosophy Professor Dr. Mathias Risse (2018) recently published a research brief illuminating the Gordian Knot of ethics, human rights, and the creation of artificial intelligence. Two concerns are particularly relevant to human rights: (a) the transmission of bias from human to machine (i.e. discrimination and prejudice along gender, ethnic, ableist, or ageist dimensions); and (b) the problem of value alignment (i.e. ongoing debate regarding how and which normative values should be imparted into machines). By the same breath, Risse contends human rights advocacy networks would do well to integrate AI into their operations for two purposes: 1) to increase the efficiency and minimize human risk in humanitarian emergencies, and 2) to insert the human rights community into the AI community. As AI technology develops, perhaps even to the point of artificial consciousness, human rights language must offer clear rules and safeguards concerning the human-AI relationship.
Genetic Engineering. He Jiankui Shenzhen, China, recently claimed the mantle of the first research scientist to use genetic engineering to alter embryos during fertility treatments (pending corroboration from peer reviewers). The human right to our own genetic material has sometimes been referred to as 4th Generation human rights, and this generation declares the human genome is a crucial part of human heritage (Cornescu, 2009). The use of genetic engineering has been considered a potential boon for eradicating diseases such as HIV/AIDS, while simultaneously harkening to Nazi sentiments regarding the creation of a perfect human race. In the coming years, the human rights community must decide, in no uncertain terms, how and if humanity itself should be subject to engineering, and how human rights fits into this process.
Space Colonization. (In)Famous technology personality and businessman Elon Musk claims he and his private spaceflight company SpaceX will send the first human beings to Mars at or before the year 2024, build Mars’ first city in the 2030s, and terraform Mars into an Earth-like planet throughout the 2100s. As Musk and other billionaires seek to tame the Final Frontier, ethical concerns about the human right to and human rights in outer space must be clarified. Most notable of these issues is that of “internality”: through lack of access and/or privilege, many humans will remain Earth-bound, with “no true escape… from the atomic bomb, terrorism, or the ecological crisis, which is already dramatically destroying our environment” (Calanchi, Farina & Barbanti, 2017, p. 215). Stoner (2017) presents another arresting argument: space colonization is an inherently invasive act (a resurrection of the horrors of “New World” colonialism, nonetheless) and threatens to displace or destroy life on any extraterrestrial bodies that humans colonize. Before hightailing it across outer space, perhaps our species should instead focus on the human rights crises on our home planet.
NASA’s Hubble Telescope Finds Potential Kuiper Belt Targets for New Horizons Pluto Mission. Source: NASA Goddard Space Flight Center, Creative Commons
The Age of Human Rights?
Eighteen years ago, former UN Secretary-General Kofi A. Annan penned an editorial for Project Syndicate Magazine, lauding the fact that the UN and its member states broadly coalesced around the norm of human rights: “Above all we have committed ourselves to the idea that no individual – regardless of gender, ethnicity or race – shall have his or her human rights abused or ignored.” Cautiously optimistic from the international community’s recent outrage towards massive human rights violations and movement towards protecting vulnerable populations, Annan proclaimed that the 21st century will be the “Age of Human Rights”. Annan’s optimism stemmed from his observation that global civil society had, in the span of 52 years, began to take seriously extrajudicial violence both within and between member states. There is another reason to be optimistic as well. Humans in the current day have a universal language, mechanism, and procedure to prevent global catastrophe; this was not the case leading up to the last catastrophe – World War II.
Human rights are not static concepts – they are constantly defined and redefined through developments in research, policy, and practice. Human rights are also ideal forms – translating abstract concepts from documents such as the UDHR into the messy world of lived experience is a Herculean task. The idea of human rights is challenged by both thought and behavior, whether the ideology of nationalism or the actions of genocidaires. Human rights are claimed, in the sense that each one of us has a responsibility to report suspected human rights violations, to defend the notion of universal human rights from potential spoilers, and to self-advocate in instances where our rights might be diminished. The human rights movement must also be forward-looking, anticipating future dangers well before they happen, pre-emptively codifying human rights to account for the scientific and ethical progression of human civilization. The human rights movement is an opportunity for humanity to write its own rulebook, guiding our approach to thorny issues such as climate change, AI, genetic engineering, and space colonization.
These and more profound challenges await our species in the coming years, and an adaptive, cogent, and enforceable doctrine of human rights will prepare humanity to successfully transform these challenges into opportunities for growth for the human species. This growth is utterly contingent upon a global commitment to the idea of human rights – that all individuals deserve a free and full life, dignified by our shared human condition and experience. If the Age of Human Rights is indeed here, the global community should adopt an outlook of futurism in human rights: looking into the coming years, taking stock of critical issues on the horizon, and utilizing the human rights movement to brace global civil society for the coming winds of change. It is not enough that the Age of Human Rights decries violence in all of its forms. To future generations, the Age of Human Rights must be known for its foresight identifying, preventing, and transforming global and (perhaps) extraterrestrial challenges for the betterment of all humankind.
This post was originally written for the 70th anniversary of the Universal Declaration of Human Rights (December 10, 2018).
References
Calanchi, A., Farina, A. & Barbanti, R. (2017). An eco-critical cultural approach to Mars colonization. Forum for World Literature Studies, 9(2), 205-216.
Cornescu, A. V. (2009). The generations of human’s rights. Days of Law, Conference Proceedings. Masaryk University.
Risse, M. (2018). Human rights and artificial intelligence: An urgently needed agenda. Cambridge, MA: Carr Center for Human Rights Policy.
Saito, N. T. (1996). Beyond civil rights: Considering “Third Generation” international human rights law in the United States. The University of Miami Inter-American Law Review, 28(2), 387-412.
Stoner, I. (2017). Humans should not colonize Mars. Journal of the American Philosophical Association, 3(3), 334-353.
Flag of the United Nations, paixland, Creative Commons
The conception of the Universal Declaration of Human Rights (UDHR) gave birth to human rights as they are known today. Adopted by the United Nations (UN) General Assembly on December 10, 1948, the UDHR was a response to the atrocities that took place during World War II. As half the globe laid in ruin and millions of lives were taken, a dormant side of humanity seemed to reawaken within the world powers, and an international prioritization of human rights emerged. The UDHR, comprised of 30 Articles defining human rights, was an expression of humanity’s resurgence, as well as an international commitment to never allow such monstrous acts to take place again.
Those tasked with composing the UDHR were members of the Commission on Human Rights, chaired by the dynamic Eleanor Roosevelt, who served as First Lady of the United States from 1933 to 1945. Roosevelt transformed the role of the First Lady by using her position as a platform for social activism in women’s rights, African-American rights, and Depression-era workers’ rights. After her husband, President Franklin D. Roosevelt, died in 1945, she was appointed to be the US Delegate to the UN and served in this role for 7 years. It was her experience and passion for social activism that prepared the widow Roosevelt to Chair the commission responsible for creating the UDHR. Roosevelt asserted the Declaration would reflect more than Western ideas; to accomplish this, the Human Rights Commission was made up of members from various cultural and legal backgrounds from all around the world, showing respect for differing cultures and their customs while also ensuring each region had a hand in creating the document. Under Roosevelt’s leadership, the diverse commission was able to craft the UDHR in a unique and culturally-competent way.
Eleanor Roosevelt, Kevin Borland, Creative Commons
The UDHR was the first document in history to explicitly define what individual rights are and how they must be protected. The Preamble of the document outlines the rights of all human beings:
Whereas recognition of the inherent dignity and of the equal and inalienable rights of all members of the human family is the foundation of freedom, justice and peace in the world,
Whereas disregard and contempt for human rights have resulted in barbarous acts which have outraged the conscience of mankind, and the advent of a world in which human beings shall enjoy freedom of speech and belief and freedom from fear and want has been proclaimed as the highest aspiration of the common people…
Thus, for the first time in history, human rights were assembled and codified into a single document. The Member States, or sovereign states that are members of the United Nations, came together in agreement to protect and promote these rights. As consequence, the rights have shaped constitutional laws and democratic norms around the world, such as the Human Rights Act of 1998 in Britain and the Civil Rights Act of 1964 in the United States.
Dove Silhouette, Creative Commons
The Commission on Human Rights defined human rights with the conception of the UDHR. By fusing dignity, fairness, equality, respect, and independence, the UN defines human rights as:
rights inherent to all human beings, regardless of race, sex, nationality, ethnicity, language, religion, or any other status. Human rights include the right to life and liberty, freedom from slavery and torture, freedom of opinion and expression, the right to work and education, and many more. Everyone is entitled to these rights, without discrimination.
Human rights are the cross-cutting theme within every UN agency. They have inspired the UN’s Sustainable Development Goals (SDGs), which are goals to “provide peace and prosperity for people and the planet, now and into the future.” These planet-, urbanization-, and group-focused goals substantially contribute to the realization of human rights, as the human rights-based approach to development stipulates development is conducive to the promotion of human rights. In the ideal sense, human rights are a guiding force toward living in global harmony, and through the promotion of the basic rights bestowed by the UDHR, the world has made strides toward achieving that harmony.
Representation shapes the way we view the world – media regularly exposes us to perspectives and truths that we may otherwise never experience. Disability is one perspective that abled society frequently avoids. Persons with disabilities are heavily under-represented in media, and existing representations often perpetuate harmful stereotypes. Persons with disabilities are rarely depicted with agency or dignity. More often, disability in media is associated with helplessness, pity, or as a perverted source of inspiration for abled people.
However, times are changing. GLAAD’s Where We Are On TV is an annual report on diversity in television; findings from the recent 2018-2019 television season report a positive trend on representation for people with disabilities. Last year’s report found that 1.8% of all series regulars on primetime broadcast television had disabilities, while this year’s report lists 2.1%. This is only a small increase, and still under-represents the proportion of Americans with disabilities. According to the United States Census Bureau, Americans with disabilities make up between 12–19% of the population (variation in range is due to inconsistent definitions of disability).
But that 2.1% consists of a variety of compelling characters with disabilities. Popular television shows Speechless is groundbreaking for its representations of differently-abled youth. The show is centered around a young man with cerebral palsy, JJ, and his wacky family and friends. Speechless is unique in its approach of wholesome humor to deal with the difficulties of navigating personal agency, inclusivity and the struggles of teen life. Disability is so often viewed from a lens of misery, alienation, and darkness, but this show handles tough topics without demonizing disability. Speechless demonstrates that life with disabilities is much like any other, filled with pain but also joy and laughter. Though this is only one show, Speechless empowers persons with disabilities and sets a better tone for disability representation.
Despite under-representation in mainstream media, people with disabilities have found power in creating a culture of agency within their respective communities. Superfest, a disability film festival, was held in October of this year and showcased a range of perspectives from quadriplegia to cerebral palsy to Deafness. Social media allows persons with disabilities to present their own image of independence and beauty, empowering themselves and others. Advocate/blogger/model Mama Cax is an amputee woman of color with nearly 200k followers on Instagram (@mamacaxx). Cax, who modeled in popular designer brand Chromat’s inclusive Pool Rules campaign, is an inspiration to many women with disabilities who have never seen bodies like theirs proudly and unapologetically represented as beautiful.
Positive strides are also being taken in terms of political representation. Notable people with disabilities in politics include former president Franklin Delano Roosevelt and former Senator Tammy Duckworth. FDR was the first and only United States president who used a wheelchair; Duckworth was the first woman with a disability to be elected to Congress. Currently, no member of Congress has openly identified as having a disability, but the recent midterms did include several candidates with disabilities. Disability Action for America is an organization dedicated to increasing representation for persons with disabilities in the American political arena. Disability Action for American endorsed 16 candidates and raised money to aid their campaigns through the grassroots effort Disability Action Network. With their help, Jennifer Longdon is the first full-time wheelchair user to be elected to Arizona’s State Legislature.
“I think that my own marginalization, my own minority status, gives me a point of view that some of the other candidates might not share. It’s all interconnected. We’ve got to work together to get solutions… It touches education and employment. It touches housing and public transportation and health care and how the criminal justice system works. It touches disability and being LGBTQ, disability and being undocumented, disability and being black or brown, disability and being poor, being uneducated, being whatever else that made you ‘other.” – Jennifer Longdon
People with disabilities are a large and significant community. Increasing representation in media and politics is a critical step towards the acknowledgement of the rights of persons of disabilities at all levels, in all arenas. The examples discussed in this blog are few, but I believe that representation will grow from here. As more people see disability through better representation, disability becomes less distant and more easily understood and accepted. Disability advocates and activists are already growing in number as social justice movements have made efforts towards inclusion and intersectionality. These factors combine to create a positive force for change. Though there are still plenty of barriers to dismantle, disability representation and inclusion in society is on an upward swing.
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