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.

CRPD: Implementation for the people, by the people

** As the IHR and other sponsors prepare for the “Symposium on Disability Rights,” the next few weeks will highlight some posts from the past as well as feature new posts written to provide some background into the various panel focuses.  

* This is a repost from summer 2017.

a picture of the CRPD CoSP banner outside of the UN
Source: Ajanet Rountree

The UAB IHR team had the opportunity to participate as rapporteurs in the Conference of State Parties (CoSP) annual meeting at the United Nations headquarters in New York City. In accordance with Article 40 of the Convention on the Rights of Person with Disabilities (CRPD), CoSP consists of convention signatories responsible for the implementation of the Convention. This annual meeting is the “most diverse international disability meeting in the world” because it brings together UN agencies, non-governmental organizations, human rights institutions, disabled persons organizations (DPOs), and civil society.

Estimated at 1 billion, persons with disabilities are the largest minority worldwide, facing considerable marginalization in every day life. The CRPD is the first human rights treaty of the 21st century, with the expressed purpose of ensuring that “all persons with all types of disabilities…enjoy all human rights and fundamental freedoms”. Adopted by the United Nations General Assembly in December 2006, the CRPD is the first treaty “open for signature by regional integration organizations” (app) who exercise the social development dimension by changing attitudes and approaches to persons with disabilities.

The UN Enable website designates the mandate of CRPD as “the movement from viewing persons with disabilities as “objects”  of charity, medical treatment, and social protection towards viewing persons with disabilities as “subjects” with rights, who are capable of claiming those rights, and making decisions for their lives based on their free and informed consent as well as being active members of society.” In other words, CRPD focuses on the human being rather than the disability, and its implementation teaches the world to do the same. As of November 2016, 168 states and the European Union ratified the Convention; the United States has not.

The CRPD presents a disabled perspective to an able-bodied norm. Through the CRPD, persons with disabilities– disempowered through invisibility that is rooted in an able-bodied world, which often forgets their existence—benefit as their human rights infuse with other conventions, standards and norms of treatment.

a map of the nations that have and have not ratified the CRPD
Source: UN Enable

Janet Lord argues that the language utilized in the CRPD reinforces the need to reframe disability as a contribution to society, rather than a hindrance. Pointing to the American Disability Act (ADA) as a stepping-stone to the CRPD creation, she makes a clear delineation that CRPD is not an international version of ADA. “[CRPD] provides a framework for the development of disability rights in countries that is, in large part, inspired by the principles and concepts found in the ADA—nondiscrimination, inclusion, autonomy, human dignity. Like any other human rights treaty, the CRPD seeks to ensure that the human rights to which all are entitle are actually implemented for persons with disabilities.” She hones in on two essential themes of the CRPD: non-discrimination and employment.

First, non-discrimination is all-inclusive as defined in Article 2 and outlined in Article 5. “Discrimination on the basis of disability means any distinction, exclusion or restriction on the basis of disability which has the purpose or effect of impairing or nullifying the recognition, enjoyment or exercise, on an equal basis with others, of all human rights and fundamental freedoms in the political, economic, social, cultural, civil or any other field. It includes all forms of discrimination, including the denial of reasonable accommodation.” Akiko Ito, Chief of the Secretariat for the Convention on the Rights of Persons with Disabilities, insists the need for at least two perspectives, disabled and gendered, when mainstreaming disability as a measure to counter discrimination. Unfortunately, the layers of discrimination are not limited to two perspectives; therefore, it is necessary to include race and/or ethnicity, given the intersectionality of an individual life.

Second, barriers to employment reinforce exclusion and marginalization. While employment barriers differ depending on the disability, the overarching concept lies in accessibility. As an able-bodied person, I take accessibility for granted. Consider how a wheelchair user gets to work if there is not access to a bus, cab, or car that is accessible; or how a visually impaired person gets information from the internet, if there is no voice-over technology. Article 27 of the CRPD challenges and demands the labor market to be “open, inclusive and accessible…by taking appropriate steps” for persons with disabilities to participate and enjoy the right to work. UN Enable reports that there is difficulty in obtaining data on persons with disabilities, specific to employment; however, here some of what we know:

  • In the US, a 2004 survey reported that 35% of persons with disabilities have employment when compared to 78% of the rest of the population.
  • China has an estimated 83 million persons with disability – that is 6.3% of the country’s population
  • In Ireland, 37% of persons 15-64 have a disability and are employed
  • Thailand states that 1.3 million of the 4.8 million persons with disabilities are working age
  • 70% of Russia’s disabled population is unemployed

The rights to employment and non-discrimination fall into the categories of economic and social affairs. While CoSP ensures the practical application of the CRPD on the local level, the Department of Economics and Social Affairs (DESA) advises, develops, and oversees policy creation and the implementation of CRPD on the national level. Ito explains, “DESA works to support the development pillars of the United Nations – peace and security, and human rights.” CRPD and its implementation align with the 1945 UN Charter that seeks to identify progress in economic and social development, and promote human rights through the creation and maintenance of a peaceful and prosperous world.

The role of civil society is imperative in the implementation of the CRPD. Article 33 makes allowance that persons with disabilities and their organizations are involved and participate in the monitoring process; this outlet is CoSP. Civil society participation is uncharted territory as no other human rights treaty acknowledges the advocacy, accountability, and the representation of NGOs. By recognizing the mandates and positions of NGOs within communities and around the globe, CoSP is striving to ensure the full inclusion of persons with disabilities into an accessible and accepting society. To be clear, the implementation process is complex, difficult, and far from over. Fortunately, having persons with disabilities led and dominate discussions, CoSP represents a microcosm of dedicated innovation and a relentless pursuit of excellence as they collaborate to create, maintain, and reframe equal representation of human rights through participation and partnership.

Over the course of this week, the team will share personal experiences and takeaways from this incredible week that included the official launch of the CRPD app and sharing of Making Disability Rights Real in Southeast Asia by Dr. Derrick Cogburn and Dr. Tina Kempin Reuter.

 

 

Representing Disability 

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 1219% of the population (variation in range is due to inconsistent definitions of disability).

Three people in wheelchairs face each other while talking.
“Creative Accessibility Mapping Tour.” Source: Andi Weiland / SOZIALHELDEN, Creative Commons.

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.

“Ignite Phoenix 9 – Jennifer Longdon.” Source: Sheila Dee, Creative Commons.

“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.

International Day of Persons with Disabilities 2018

Today, December 3, 2018, is the International Day of Persons with Disabilities (IDPD), an observance promoted by the United Nations (UN). This year’s theme, “Empowering persons with disabilities and ensuring inclusiveness and equality,” accommodates the 2030 Agenda for Sustainable Development’s pledge to “leave no one behind” which envisions sustainable urbanization, namely through a smart-city approach that prioritizes digitalization, clean energy, technologies, and service delivery. Such ambition is salient to persons with disabilities because, above all, achieving these goals will result in communities that are more accessible and inclusive for everyone.

It is argued the main contribution to why persons with disabilities have been excluded from public life is the practice of the medical model of disability (MMD) which embraces the perspective of non-disabled persons, reducing persons with disabilities to dysfunctional people in-need of medical treatment, with emphasis on normative functioning of the body. As a result, persons with disabilities are often assigned a sick role that exempts them from activities and expectations of productivity, leaving them as passive recipients of medical goods and services. These medicalized expectations of normality, restoration, and functional independence can devalue the lived experiences of persons with disabilities, thus inviting discrimination into their daily lives.

On the contrary, the social model of disability (SMD) challenges the knowledge/power differential employed by medical authorities and suggests empowerment for persons with disabilities, ultimately strengthening the patient role and influencing changes in treatment paradigms. Furthermore, the SMD argues that social practices are what disable persons with impairments, placing many persons with disabilities into isolating circumstances and preventing full civil participation. Whether it be employment in Alabama or being a refugee in Kenya, the SMD challenges the MMD by suggesting persons with disabilities are an oppressed group that experiences discrimination and deserving of equal treatment.

On December 13, 2006, the UN adopted the Convention on Rights of Persons with Disabilities (CRPD), an international agreement which details the rights of persons with disabilities and lists codes for implementation, suggesting both states and disabled people’s organizations (DPOs) are to coordinate to fulfill such rights. In the following years, nations spanning the globe have ratified the CRPD, such as Jordan (2008) and Ireland (2018), thus strengthening protections for persons with disabilities. Although the United States is one of the only nations to have yet ratified the CRPD, this international document is largely modeled after the Americans with Disabilities Act (ADA), signed in 1990, which prohibits discrimination toward persons with disabilities. As a result, we are only seeing the beginning of what is to come for accessibility and inclusion for persons with disabilities, both domestically and globally.

Disabled people celebrate the passage of The Rights of Persons with Disabilities Bill, 2016 by the Lok Sabha, in New Delhi. Source: Hindustan Times, Creative Commons

 

To commemorate IDPD 2018, the Institute for Human Rights is holding a blog series today that addresses access, inclusion, and representation for persons with disabilities, namely through the influence of media and power of politics.

“Let the shameful wall of exclusion finally come tumbling down.” – George H.W. Bush at the signing of the ADA

Not Just A Phase: Bisexuality, Invisibility and Invalidation

Of the identities that together form the full rainbow of the LGBTQ+ community, the “B” is one of the least visible despite its sizable population. Per the San Francisco Human Rights Commission, “self-identified bisexuals make up the largest single population within the LGBT community in the United States.” LGBTQ+ refers to all of the people who identify as lesbian, gay, bisexual, transgender, and queer (a reclaimed term used to refer to all other identities not represented by the ones listed). However, not all people feel represented by the word “queer,” and the plus sign is meant to be inclusive of those communities.

A pink, purple, and blue flag flies to represent bi pride.
“The bisexual pride flag.” Source: Peter Salanki, Creative Commons.

To understand the experience of bisexual people, one must first understand the basics of gender and sexuality. Gender is a term that describes the social representation of biological reproductive processes, while one’s gender identity is based on personal identities, or the “internal perception of one’s gender” (SafeZone Project).  Gender is what most people attach words like “man” and “woman” to, but can encompass a variety of identities such as agender (one who does not experience gender identity), polygender (one who experiences multiple gender identities), and genderfluid (can experience a combination of gender identities depending on the day).  Sexual orientation is the “sexual, romantic, emotional/spiritual attraction” that one experiences, often depending on which gender/genders that they are attracted to. Straight, gay, lesbian, bisexual, pansexual, and asexual are all examples of different sexual orientations, though a wide variety exists in addition to those listed.

Bisexuality (bi) does not have one all-inclusive definition, but the term “bisexual” generally refers to a person who experiences attraction to people of their own gender as well as people outside of their gender. The experience of bisexuality can be shared by pansexual people. The two terms overlap, as pansexual people experience attraction regardless of gender. Typically, one differentiates between the two identities with respect to how an individual identifies themselves; some bisexual people could technically be called pansexual (and vice versa), but the most inclusive practice is to respect each individual/community as they define their own experience.

A couple embraces in the street during a gay pride demonstration.
“Thousands march in Madrid to claim an anti-capitalist and combative Gay Pride.” Source: Adolfo Lujan, Creative Commons.

Semantics aside, bi people have faced a long history of adversity with very little notoriety. Bisexuality as an identity has been chronically invalidated, demonized, and even blatantly ignored. Discrimination towards bisexual people has long been enforced by a heterosexual society, but many bi people have experienced discrimination from within the LGBT community as well.

According to the oldest bisexual advocacy organization in the United States, bisexual people are more likely to live in poverty, have higher rates of sexual and intimate partner violence, and report higher rates of poor physical/mental health than lesbian, gay or straight people. Research from the same source reveals that “bisexuals are six times more likely than gay men and lesbians to hide their sexual orientation,” and nearly one-quarter of bi people have never shared their orientation with anyone.

One might expect a stronger community backlash to this level of inequality, but biphobia is so pervasive that few dare to speak out. Biphobia, or the aversion to bisexuality, is experienced frequently by bisexual people while in the company of others who assume that they are either heterosexual or homosexual (depending on the bi person’s partner). Bisexuality is a unique identity in that a bi person is not defined by the gender of their partner, and this heteronormative invisibility is what makes the bi existence so difficult. UC San Diego’s LGBT Resource Center puts it this way:

“Lesbian, gay, and heterosexual people are invested, and find a sense of security in being the ‘other’ to each other, and unite in the fact that they are only attracted to either the ‘same’ or the ‘opposite’ gender/sex. This sets up another ‘us’ vs. ‘them’ dynamic which effectively marginalizes bisexual people as ‘other.’ Integral to this dynamic is the automatic assumption people can be defined by the gender/sex of their current or potential romantic interest.”

An openly bisexual person often experiences the condescending attitudes of those who think that it’s just a phase. Straight people assume that bisexuals will eventually revert back to heterosexual “normalcy,” while LGBTQ+ people may assume that the bi identity is merely a “half-gay, half-straight” phase that will culminate in a homosexual identity later on. However, research provides data to the contrary – a longitudinal study found that 92% of bisexual women still identified as bisexual over ten years later. To be clear, sexual orientation is not validated or invalidated based on its fluidity. This data only provides evidence that bisexuality can be a stable orientation.  These attitudes are reinforced by the assumption that society is separated into a heterosexual norm and a homosexual other, leaving little room for the huge spectrum of sexuality that falls between gay and straight.

“C.D. Kirven with the Trans Pride Flag while Get Equal flies the Bisexual & Rainbow Pride Flags.” Source: Melissa Kleckner, Creative Commons.

The statement “I’m bisexual” can also lead down a different but equally terrible path – the inevitable, half-joking “That’s hot!” or “Oh, so you want to have a threesome?” The stereotype that bisexual people are hypersexual is both degrading and exhausting. “Hypersexual” stereotypes assume that certain people are more likely to frequently engage in sexual activity with a lesser degree of moral restraint; this stereotype is applied to many identities other than bisexuals, and is particularly common for black and Latina women. Far too often, the experience of coming out as bi in addition to the perception of hypersexuality ends in an unwanted sexual invitation that can be traumatic, particularly considering the high rate of sexual violence among the bi community. The can permeate and negatively affect bisexual relationships, as their partner may struggle with trust issues resulting from this widespread misrepresentation. Some people may even avoid relationships with bisexuals altogether for fear of infidelity.

Each of these experiences results in the invalidation of bisexuality. Being bisexual is valid in itself, not as a stepping stone to a different sexual orientation or as a prop to spice up your heterosexual love life. Additionally, bisexuality is not the easy way out. An assumption exists that, even if the bisexual orientation is valid, bi people will eventually settle down into an opposite-gender relationship in order to bypass social discrimination that accompanies an LGBTQ+ identity. However, bisexual people in heterosexual-passing relationships are still equally affected by discrimination, biphobia, and invalidation; “passing” as straight does not negate the hardships that are tied to the bisexual experience.

Biphobia, invisibility, and discrimination are some of the most subversive yet malicious tools that are used to maintain the societal fabric of heteronormativity. Limiting or invalidating the bisexual orientation only strengthens the gay/straight dichotomy that holds us all back from freely experiencing the full spectrum of sexuality and gender. It’s easy to proclaim that the system should change, but realistically, what can we do to reduce injustice for bi people? First, you should examine your own thoughts and attitudes towards bisexuality. It’s easy to be complicit in biphobia and erasure if you aren’t aware of your unconscious bias. If you find and acknowledge any prejudicial tendencies, challenge those thoughts. Don’t assume a person’s sexual orientation based on their partners – ask them! If you witness a casual biphobic joke, call it out instead of being silent. Make room for bisexual people within the LGBT community. Above all, respect everyone’s identity enough to support and validate the terms that they choose for themselves.

Diversity, Equity, and Inclusion in the United States

A mural of diverse faces on the gateway into Chamizal National Memorial
National Park Gateway: Chamizal National Memorial. Source: National Park Service, Creative Commons

Every four years, the US Department of the Interior releases a strategic plan highlighting their mission and future goals to best serve the American people. As the current plan spanning the 2014-2018 cycle is now drawing to a close, the updated 2018-2022 strategic plan has been created, but was leaked early online. Outside Magazine drilled deep into its content, and on November 2nd published an article addressing the fact that while there were significant changes in terms of National Park fees and regulations, “few took notice that the new administration has deleted the entire diversity, equity, and inclusion mandate from its plan.”

Political discussions about the outdoors usually focuses on the health of the environment or land usage rights, but a movement has been growing to confront what has been described as “The Adventure Gap“, or the underrepresentation of people of color in outdoor spaces. Grassroots efforts have been established to try and address this, such as the organization GirlTrek to get black women outside and walking to increase the health of their communities, but with many state and national parks being located outside of a city’s public transportation network and the entrance prices for popular parks being on the rise, the government for the last several years has been developing ways to extend access to those who would not have had the opportunity to participate in the park system through programs like Every Kid in A Park, an initiative that offers free admission to all fourth grade students across the country. Yet by excluding the mandate on diversity, “the inclusion of individuals representing more than one national origin, color, religion, socioeconomic stratum, sexual orientation”, equity, “freedom from bias or favoritism”, and inclusion, “the action or state of including or of being included within a group or structure”, it is unlikely that initiatives to promote participation by minority groups within America’s public lands will be supported.

This is the latest in a string of decisions in which previous protections, mandates, and initiatives concerning diversity have been deconstructed or removed under the current administration. For example, in January following the inauguration of President Trump the new whitehouse.gov website was found to not only have dropped the page on climate change but to have also discarded the Obama-era page affirming the executive branch’s commitment to supporting the LGBTQ community. This was followed in October by an announcement from the Justice Department that protections from discrimination in the workplace under Title VII (“prohibits employment discrimination based on race, color, religion, sex and national origin”) would no longer apply to transgender workers. An easy argument to latch onto is that it is not the government’s place to be forced to affirm the identify of various groups, but after the January ban on refugees, the July ban on transgender military service personnel, and the September announcement of the repeal of the Deferred Action for Childhood Arrivals program, it is no longer assumed that the government will issue protections for those who have been historically marginalized. However, the United States has wrestled with similar moral and legal debates over the last 200 years, and as preached by 19th century minister Theodore Parker and echoed later by Dr. Martin Luther King Jr.,

“The arc of the moral universe is long, but it bends toward justice.”

Since the establishment of the United States, there has a been constant tension concerning who is allowed to claim certain rights. In 1868, a first step of progress was made by introducing the 14th Amendment into the constitution, granting US citizenship to former slaves and declaring that all people are to be seen as equal under the law. At the time this amendment was a revolutionary statement, and throughout the country’s history this amendment has been the foundation for many of the most well-known civil rights cases the United States’ court system has ever seen.

Ninety years after the 14th Amendment had been ratified, challenges on the nature of equality were still being debated and put to the test as measures such as Jim Crow laws were enacted. Separation between blacks and whites was enforced in many public spaces, and education, marriage, and healthcare for the black community were all impacted negatively as a result. Yet in 1954, these policies were brought to court under the title of Brown vs Board of Education. Through the success of the plaintiff’s argument, schools across the country would soon be desegregated over the following years.

A display board from the Rosa Parks Collection Library of Congress about Equal Employment Opportunity
Equal Employment Opportunity – Title VII. Source: Ted Eytan, Creative Commons

Moving into the Civil Rights period of the 1960’s, the next phase of striving towards diversity, equity, and inclusion was the implementation of Affirmative Action in 1961. The history of the action is summarized on the National Conference of State Legislators website, recounting that

“In 1961, President Kennedy was the first to use the term ‘affirmative action’ in an Executive Order that directed government contractors to take ‘affirmative action to ensure that applicants are employed, and that employees are treated during employment, without regard to their race, creed, color, or national origin.’ The Executive Order also established the President’s Committee on Equal Employment Opportunity, now known as the Equal Employment Opportunity Commission (EEOC).”

Affirmative Action still stands today and has been joined by the Age Discrimination in Employment Act of 1967 and the Americans with Disabilities Act of 1990, but much like the decisions preceding them, these acts are still hotly contested. Critics argue that the actions lower standards and may force an employer to hire candidates unfit for the job, while supporters counter that the actions succeed at allowing underrepresented applicants such as ethnic minorities, women, those over age 40, racial minorities, and those who are disabled an equal chance to compete for white collar positions instead of being weeded out at the beginning of the process due to negative biases. Regardless of the controversy, Affirmative Action was another step in laying the groundwork for future actions, codes such Title IX (“prohibits discrimination on the basis of sex in any federally funded education program or activity.”), and eventually the incorporation of diversity policies and statements into modern organizations.

After the implementation of Affirmative Action and Title IX, some organizations decided to go beyond the minimum and make diversity a core aspect of their operations.  Through diversity statements, organizations and businesses make it clear that they stand for the promotion of a diverse workforce and that diversity in background, skills, and life experience breeds a healthy work environment. Universities have taken the lead on this front, and UAB has incorporated these ideals in two ways. First, any group who wants to become an official club on campus must make sure to include the UAB Nondiscrimination Clause within their constitution before being approved. Secondly, the university has created the Office of Diversity, Equity, and Inclusion to specifically promote this cause. On the office’s website, a Statement on Diversity is included that reads

“Diversity is a defining feature of Birmingham’s past, present and future. At UAB, we are committed to capitalize on what makes Birmingham and the University trailblazers in moving inclusion forward. We are invigorating conversations, fostering civic engagement, widening perspectives, stimulating innovation and connecting people. Every day, we seek ways to actively promote and recognize principles of fairness and equity, in relation to, and across, intersections of race, age, color, disability, faith, religion, ancestry, national origin, citizenship, sex, sexual orientation, social class, economic class, ethnicity, gender identity, gender expression, and all other identities represented among our diverse communities.”

These type of statements work as a positive sentiment, but it is important to note that by making an organization-wide commitment to diversity, equity, and inclusion also serves as a protection for people underrepresented in certain industies. In August, Google faced an incident that sent waves through Silicon Valley as one of their employees, James Damore, sent out an “Anti-Diversity Manifesto” to other employees across the company. In it he stated that “Differences in distributions of traits between men and women may in part explain why we don’t have 50% representation of women in tech and leadership” followed by “discrimination to reach equal representation is unfair, divisive, and bad for business.”

The google team marches in a gay pride parade
Google Gay Pride. Source: Wikimedia Commons, Creative Commons

The response from those both inside and outside of Google was one of outrage and condemnation, although it should be noted that Damore did have supporters behind him and that these beliefs were not new development to the field. In the April 2017 Issue of The Atlantic, it was reported that within the tech industry most women have had to combat issues ranging from demeaning remarks to fending off repeated instances of inappropriate sexual advances. The article also referenced a number of studies reporting that women “are evaluated on their personality in a way that men are not. They are less likely to get funding from venture capitalists, who, studies also show, find pitches delivered by men—especially handsome men—more persuasive. And in a particularly cruel irony, women’s contributions to open-source software are accepted more often than men’s are, but only if their gender is unknown.”

This put Google in a difficult situation, for if they kept Damore as an employee others would see that as condoning his points and continuing the cycle of discrimination against women, but if they fired him as a gut reaction Google would be confirming his “echo chamber” criticism of the company. However, because of Google’s proactive steps to address this type of issue should it arise, a statement rejecting the manifesto was issued by their Vice President of Diversity, Integrity & Governance, Danielle Brown.

“We are unequivocal in our belief that diversity and inclusion are critical to our success as a company, and we’ll continue to stand for that and be committed to it for the long haul… Part of building an open, inclusive environment means fostering a culture in which those with alternative views, including different political views, feel safe sharing their opinions. But that discourse needs to work alongside the principles of equal employment found in our Code of Conduct, policies, and anti-discrimination laws.”

Through the embedding of diversity into their values, Google was able to swiftly respond by referencing their company policies and showing that those who disagree do so against the whole of the company’s standards and practices.

The Google incident is one of many demonstrating the importance of developing and including diversity statements and mandates within institutions and organizations. While used mainly to voice solidarity and commitment, the statements have the power to protect those who are underrepresented should a situation arise. The recent dismantling of these mandates and protections by the Department of the Interior and the Justice Department have left minority groups far more vulnerable to exclusion up through the highest levels of government; yet when viewing these decisions through the historical lens of diversity advocacy in the United States, the current blockages may only be temporary stumbling blocks on the road to further and deeper acceptance of inclusion across the nation.

A 29th Floor Perspective

 

1st Ave from the 29th Floor of the UN
1st Ave from the 29th Floor of the UN. Photo by Ajanet Rountree.

The United Nations (UN) Conference on State Parties (CoSP10) experience began on the 29th floor for me. I say this because I lived in New York City and toured the UN on a couple of occasions. Additionally, living a life that is inclusive of persons with disabilities is in my wheelhouse. A friend and mentor utilizes crutches to help him walk because an accident, when he was younger, took the full use of his legs. Cancer took the use of B’s legs when she was a baby, and a motorcycle accident left my uncle paralyzed from the waist, making them both wheelchair users. I lead with all of this to say that making room in my world for persons with disabilities is something I have done for decades. My familiarity, in a sense, is akin to the knowledge gained by a couple of tours of the UN lobby and gift shop. Therefore, walking into CoSP10, I was prepared or so I thought.

I had never been on the 29th floor. The perspective is much different up there.

The Division of Economic and Social Affairs (DESA) is located on the 29th floor of the UN. The DESA team is responsible for both the economic and social affairs of persons with disabilities for all the UN member states as directly related to the Convention on the Rights of Persons with Disabilities (CRPD). They write and disseminate policies and ideas to the member states as suggested modes of implementation. Each policy and suggestion lies within the UN mandated Sustainable Development Goals (SDG) which is an extension of the 1945 UN Charter. SDGs are the 17 goals all member states, through collaboration, seek to achieve by 2020 as a means of ensuring “no one is left behind” while honoring the Universal Declaration of Human Rights (UDHR) and CRPD. Sitting in the conference room, I am inspired by the opportunity but not fully awake to what is about to take place.

Enter Daniela Bas.

Bas is the DESA director. During her chat with us, she disclosed a couple of points that stand out to me. First, the UN, as an employing entity, is beginning to put into action many of the policies and measures, tasked to member states for implementation. Most specifically, employing persons with disabilities in key leadership positions of which she is one. Second, the UN is an organization led by human beings seeking to do the right thing. With full acknowledgment, she reminds that the UN is not perfect but that the process of coalescing 196 backgrounds, traditions, religious affiliations, and attitudes to make significant strides at securing human rights and making the world more peaceful, is an accomplishment. Lastly, when compared to men and boys, and those who are able-bodied, discrimination against women and girls with disabilities doubles, and even triples if they belong to a minority race or class in their country. This last point, triple discrimination for women and girls with disabilities will become a recurring theme in the conference for me. The harsh reality of this fact remains an echo in my soul to this moment.

Confrontation with another person’s truth requires an adjustment to what is known through experience and education, and assumed through familiarity.

On the floor. Photo by Ajanet Rountree

I study and view life and the world with a gendered perspective in mind. I look for the role of women, our impact on families and societies, and our visibility and invisibility when it comes to equality. I am aware of the trials of living life at intersections. Intersectionality complicates because discrimination is complicated. I believe there is a temptation to separate the intersections so to obtain a solid understanding; however, it is in the attempt to separate that understanding is lost. Gaining a complete understanding of the dynamics of discrimination requires a holistic not segmented perspective.

Girls, irrespective of ability, are not as valuable or visible in many societies as boys are. Nora Fyles, head of the UN Girls Education Initiative (UNGEI) Secretariat, asserts invisibility is the fundamental barrier to education for girls with disabilities. She confirms this assertion when explaining the search for partnership on the gendered perspective education project by stating that 1/350 companies had a focus on girls with disabilities. For Bas, the failure to identify girls and women with disabilities is a failure to acknowledge their existence. Subsequently, if they do not exist, how can we expect them to hear their need? She suggests addressing crosscutting barriers. Leonard Cheshire Disability (LCD), in partnership with the World Bank, UNICEF, and UNGEI, hosted a side-event where they released their findings regarding a lack of inclusive education opportunities for girls with disabilities. Still Left Behind: Pathways to Inclusive Education for Girls with Disabilities sheds light on the present barriers girls, specifically those with disabilities, experience when seeking an education.

Article 26 of the UDHR lists education as a human right. Bas believes if knowledge is power, and power comes from education, the fact that 50% of women with a disability complete primary school and 20% obtain employment, reflects social and economic inequality. Ola Abu Al-Ghaib of LCD emphasizes policies, cultural norms, and attitudes about persons with disabilities perpetuate crosscutting barriers for girls with disabilities to receive an education. She concludes that schools are a mirror of society. In the absence of gendered sensitivity, boys advance and girls do not. Every failed attempt to address and correct the issue is a disservice to girls generally, and girls with disabilities, specifically.

It is imperative to remember that the spectrum of disability is multifaceted. Most people recognize developmental and physical disabilities like Downs Syndrome, Autism, visual and hearing impairment, and wheelchair users, but fail to consider albinism and cognitive disabilities as part of the mainstream disability narrative. Bulgaria is focusing on implementing Article 12 of CRPD regarding legal capacity. Legal consultant and lawyer, Marieta Dimitrova explains that under Bulgarian law, only reasonable persons have the right to independence; therefore, persons with cognitive disabilities receive the “unable” descriptor under assumption they are unable to reason and understand, thereby placing them under a guardian. Guardianship removes the right to participate in decisions regarding quality of life, which is a deprivation of liberty. She resolves that although full implementation into law awaits, stakeholders are seeking renewal in the new government because pilot projects have proven that an enjoyment of legal capacity in practice yields lower risk of abuse, changed attitude within communities, personal autonomy and flexibility.

Not all disabilities result from birth or accidents. War and armed conflict factor into 20% of individuals maimed while living in and fleeing from violence. A lack of medical access leave 90% of maimed individuals permanently disabled. Stephane from the International Committee of the Red Cross (ICRC) submits that for refugees with disabilities, access to essential services can be difficult on the journey and in camps, but also for those who are unable to flee. He infers a “double disability” inflicted upon refugees with disabilities: first as a refugee, and second as a person with a disability. Human Rights Watch advocates that refugee camps produce a humiliating and degrading existence for persons with physical disabilities because the “tricks” employed prior to arrival in the camps, are no longer applicable as wheelchairs sink in the mud and crutches break on rocky grounds. The Lebanese Association for Self-Advocacy (LASA) reports the underrepresentation of women and girls is significant when receiving information and access to assistance.

In a refugee simulation seminar, LASA informed that on the ground, confusion is high given that humanitarian organizations do not consult with each other, making communication difficult and non-supportive. For families with a person with a disability, nonexistence communication means a prevalence to fall victim to violence and harassment. Jakob Lund of UN Women divulges that humanitarian aid can be ineffective for women with disabilities, while Sharon with OHCHR suggests a clear dichotomy between the rights of the able-bodied and the rights of persons with disabilities holds central to the ineffectiveness. At the core of a lack of communication and accessibility is invisibility. Stephane concludes that there is an obvious need for a necessary and systematic retraining specific to educating others on how to see the invisible.

a picture of Chinatown, NYC and Brooklyn Bridge
Chinatown, NYC, and Brooklyn Bridge. Source: Madhu Nair, Creative Commons

The process of inclusion and equality relates directly to the decision to acknowledge a person’s existence. Retraining the mind to see any human being with a physical disability takes decisive action so I put myself to the test. First, I thought of all the famous women with a physical disability I could think of, and arrived at about six, including Heather Whitestone and Bethany Hamilton. I then googled celebrity women with disabilities which yielded a Huffington Post piece that identified Marlee Matlin, Frida Kahlo, Helen Keller, and Sudha Chandran as 4/10 “majorly successful people with disabilities”. I had Marlee Matlin and Helen Keller. What is more interesting is that I arrived at seven when naming men with physical disabilities. Here is the point: society is not inclusive of persons with disabilities if we have to strain our brains to remember the last time we sat next to, opened the door for, ate a meal with, or saw on the television/movie screen/church platform a person who did not look like us physically.

Perspective changes everything because perspective is everything.

“Sesame Street” and Autism: An initiative about Inclusion

Sesame Street. Source: Gavin St. Our, Creative Commons.

Sesame Street introduced viewers to the newest “live” Muppet on the block, earlier this month. Her name is Julia and she is on the autism spectrum. Initially introduced in 2015 as part of Sesame Street and Autism: See Amazing in All Children Initiative, Julia’s interaction with the other residents on Sesame Street teach them how to befriend and include individuals who are different, without being afraid. Autism Spectrum Disorder (ASD) is a developmental disability that can cause substantial social, behavioral and communication challenges. Individuals with ASD communicate, interact, and learn in ways that are different to people without ASD. Dr. Stephen Shore believes that “If you’ve met one person with autism, you’ve met one person with autism.” Every individual diagnosed with ASD has diverse functioning abilities and level of autistic symptoms, making each individual case distinctive. Currently, 1 in 68 children worldwide are diagnosed with ASD. ASD crosses every social and economic sphere. The goal of the Sesame Street and Autism Initiative is to remove the stigma of autism. Julia optimistically reminds viewers that individuals with disabilities have the talent and ability to positively contribute to our society while making the world a more unique and interesting place.

Over the past two decades, the human rights perspective on disability has shifted from viewing people with disabilities as problems towards recognizing them as holders of rights. A universal victory for people and families with disabilities came with the ratification and adoption of the Convention on the Rights of People with Disabilities (CRPD) by the United Nations in 2008. For children who Julia represents, the CRPD guarentees that those children can go grow up and have the same opportunities to achieve their goals just like children without disabilities. The United States has not ratified the CRPD, although there are continuous adjustments to domestic policies, ensuring the protection of the civil and human rights of persons with disabilities. There are currently numerous federal civil rights laws that safeguard people with disabilities so equal opportunities in employment, education, voting without discrimination are made available. The Century Communications and Video Accessibility Act (CVAA) became law under the Obama administration on October 8, 2010. This law increases the access of persons with disabilities to modern communications, and is up to date with 21st century technologies. Technology can revolutionize how people with disabilities interact and live in a society intended for those with no developmental or functional disability. The ratification of CRPD and continued promotion of the general welfare of all citizens should remain the focus of future government administrations.

People with disabilities have been marginalized and excluded from society within all cultures. National and international laws and conventions do not protect from discrimination on an individual level, with common responses of pity or disgust, which reinforced disabled peoples segregation in society. The lack of understanding regarding ASD and other disabilities can make life more stressful and challenging for individuals with developmental differences. The societal treatment towards people with disabilities lead to the phenomenon of invisibility. The phenomenon of invisibility rationalizes that society has the “tendency to construct everyday life with only the able-bodied in mind and the greater the lack of a physical presence of disabled persons in the mainstream, the more “natural” this assumption appeared to be (OHCHR).” As of March 2017, the Office of Disability Employment Policy (ODEP) disclosed that only 20.4% of people with disabilities are employed compared to 68.7% employed individuals without disabilities. Likewise, the unemployment rate for people with disabilities is 10.6% compared to 4.3% for people without disabilities. Furthermore, in 2015, Cornell University approximates 20.1% of non-institutionalized individuals with a disability aged 21 to 64 years in the United States have less than a high school education. The invisibility of people with disabilities has a drastic effect on their enjoyment of civil and human rights because they have been excluded and isolated.

a picture of a child smiling a big grin
Smile for the camera. Source: Arielle Calderon, Creative Commons.

The stigmatization of people with disabilities will persist until society embraces disabilities as adaptable differences, rather than with negative connotations. For example, a study analyzing parental perspectives on the diagnosis of ADS found that parents of non-diagnosed children described the potential diagnosis as scary, dangerous and frightening. The study also found that parents with diagnosed children sometimes go through denial, and try to find other reasons for their child’s behavior because they are reluctant to label their child as having a disability. However after the denial stage, parents elaborated on how they are started to reconstruct their beliefs about ASD, and began to project ASD from a positive perspective. This is why initiatives like “Sesame Street and Autism” are so important; not only do they educate children and adults about ASD, but also normalizes and cultivates respect for people with disabilities such as ASD. In order to communicate, Julia expresses herself in different ways that other characters on Sesame Street, who are not on the ASD. She flaps her arms when she is very bothered or happy, avoids direct eye contact, and repeats words. Even though Julia’s behaviors are different, Elmo, Big Bird and the other characters have learned to adapt, accept through understanding, and intentionally include her in their play dates.

Autism made nation headlines was during the vaccination causing autism controversy, which misinformed millions, and portrayed a diagnosis and prognosis as a hindering, negative characteristic. Julia’s addition to Sesame Street has generated significant discussion about about autism specifically, and disabilities, generally, and the societal stigma surrounding them. Recently appearances on popular network shows such as the “The View” and “60 Minutes” allowed for explanation and clarification as to why “Sesame Street” felt it was finally time to introduce a character like Julia into the show. Stacy Gordon, the women who plays the voice of Julia, very much understands the hardships of autism and inclusion. Stacy’s son is on the autism spectrum. In an interview with 60 Minutes, she admits that her sons classmates did not understand how to react to his breakdowns and social differences. She truly believes that exposing parents and children to Julia is going to help progress our society into a more disability friendly world. Sesame Street‘s leadership and dedication to teaching children love and acceptance continues to pave the way for a brighter and inclusive future. This initiative constructs a conversation about disabilities and autism while it reinforces the positive narrative about differences and inclusion.