CoSP – UAB Institute for Human Rights Blog

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

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

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

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

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

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

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

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

Disability Rights: A Personal Perspective

* This is a repost from summer 2017

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

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

Photo of the team at lunch at the United Nations.

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

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

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

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

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 21^st 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.

My experience at the CoSP10

by MIRANDA GRAY

As I reported to the United Nations for my first day of actual volunteering, I felt enwrapped by excitement, anticipation and fear. Working at the United Nations had been a goal of mine for years, and after a tour of the UN just a couple of months before, I left telling myself that my long nights of studying and research for my masters in the anthropology of peace and human rights would be worth it. That May morning, when I walked into the UN, with a purpose, not just as a visitor, I felt important and like I was on my way to making it. At the end of the experience, however, I had other career goals in mind.

Personally, one of the most memorable parts of the whole experience came on that first morning, when my coworker and fellow graduate student, Ajanet Rountree, made me march onto the floor of the General Assembly Hall to find the volunteer coordinator, Fred Doulton. The security guard told me when I walked in that I strictly was to stay off the floor, as those spots were reserved for state representatives and UN workers. Ajanet spotted Fred, and her confidence led me to where I needed to be. Stepping onto the plush green floors of the General Assembly was electrifying; I simultaneously felt like somebody, as tour groups walked across the upper floor, and nobody, as I walked past ambassadors and other state representatives. I am particularly thankful for that moment and the ability to witness such an intricate and important session.

During the opening session when states stated their progress since the last conference, I became aware of the many moving pieces and challenges states must grapple with in advocating for the rights of persons with disabilities. Lack of awareness and resources as well as increased social exclusion have all impeded progress in protecting and ensuring rights of persons with disabilities. Many nations implored the other members of the conference for more concrete data on persons with disabilities in order to better tailor advocacy measures to persons with disabilities. However, the second session I took notes on truly opened my eyes to the other pieces of the advocacy puzzle, in addition to states, and tempered my opinion of a United Nations career as the ultimate goal for a human rights worker.

My second volunteer session incorporated statements given by several nongovernmental organizations. These organizations seemed to have specific goals and methods of implementation that might drastically improve lives of persons with disabilities. I realized that a great deal of the accomplishments that states reported on were often directly because of the work of NGOs. I previously thought of work with NGos as stepping stones to the ultimate career with the United Nations. And while working at the United Nations is still a career goal of mine, I have come to realize that meaningful necessary work is not a stepping stone, but rather the ultimate career in and of itself. When I heard NGO workers talk about the most important aspects of rights of persons with disabilities, I left feeling personally challenged to advocate for others in an inclusive manner that promotes full participation and addresses the impact of multiple discriminators on persons with disabilities, specifically women and children. I realized that day that no matter the name on the door, doing good work for people would always be admirable.

Before volunteering at the United Nations’ Conference of State Parties on the Rights of Persons with Disabilities, I do not think rights of persons with disabilities were at the forefront of my mind of imminently pressing human rights issues. My previous studies have mostly focused on the rights of persons in areas of conflict, and those studies more specifically have been focused on the right to life. But following my experience volunteering at the Conference of State Parties on the Rights of Persons with Disabilities, I left having learned that any study on human rights violations should be inclusive of the particular violations persons with disabilities face. I left feeling a call to action, to advocate for persons with disabilities by listening to persons with disabilities, hearing their opinions, and acting accordingly. As I returned to UAB and Birmingham, I operate with a heightened sense of the lack of accessibility in our city, and I feel equipped with the drive and tools afforded me through my week at the UN to do something about it.

The CRPD: Path to Inclusion

UN General Assembly. Photo by Aseel Hajazin.

It has been almost been two months since the Institute for Human Rights at UAB has gone to the United Nations and the experience is still so surreal. I have always dreamed about one day working for the United Nations; I just did not realize that the opportunity would come so soon. This was also my first time in New York and actually in a lively city, so I was also really looking forward to that experience. Our team was not only going to the UN for a tour but to work. As a rapporteur, I took notes and summarized the comments made by the participating countries during the general debate and concluding conference.

Even though every delegate of their respective country has meaningful contribution to the conference, the countries that stood out the most to me was my home country of Jordan, and my host country, Saudi Arabia. In the Arab World, persons with disabilities are unfortunately sometimes invisible members of society. The conference changed my perspective on the inclusion of Arab people with disabilities in their home countries. I was fortunate enough to interact with many Arabs with disabilities in the conference and listen to their experiences. The statements that stood out to me expressed feelings of relief due to an acknowledgment by their governments; noting a significant improvement of inclusion of persons with disabilities in society, through the implementation of special programs focusing on the education and recreational needs of people with disabilities that were not present 20 years ago.

When I was 12 years old, I visited a school called The Lady of Peace in Amman, Jordan. This school focuses on providing both the educational, recreational and psychological needs of all people with disabilities. I mentioned this to one of the fellow Jordanians participating in the conference, and she knew exactly which school I was talking about! She updated me on the school and let me know they have become very involved in advocating for the rights of people with disabilities by attending conferences throughout Amman. They are not only focusing their attention on providing these services but also promoting disability rights as human rights. She also highlighted that even though the school is a Christian led organization, both Muslims and Christians respectfully come together to help organize fundraisers to continue help the school keep it functioning. The Lady of Peace continues to have a strong sense of unity and community, even after all of these years.

For me, the most impactful moment of the whole conference were the comments made by the delegate of Iraq. They highlighted how global factors need to begin focusing on people affected by disabilities due to war and violence. The delegate mentioned how before violence and war, many of the refugees were not previously disabled. Global assistance and humanitarian efforts need to focus on helping these people adapt to their new situation by providing both technological and psychological assistance and support. Before the conference, the concept of disability due to violence never crossed my mind, and after the delegates remarks I experienced an “ah-ha” moment. The media, when reporting of refugees, focuses on the health and shelter of refugees but not once have I personally heard the media report on the struggles faced by people with disabilities. Initially, I was disappointed in myself for overlooking this population. I now realize that I need to take advantage of my awareness of the reality of disability and war, advocating for awareness to other members of society.

My favorite moment of the whole conference were the comments made by the delegate of Mexico. She was very vibrant and uplifting and reminded members of the conference that we need to change the way we portray people with disabilities. We as a society discuss disability we need to make it fun, exciting and in her words “sexy.” I enjoyed her remarks because she reminded us that we do not have to remain serious all the time when discussing disabilities, and if we want members of our society to care about disability rights, we need to approach the topic in a more engaging and optimist manner.

Overall, this experience was humbling. Throughout the conference, I felt surrounded by love, acceptance, and people who want to make a genuine change in the world. I learned so many different concepts from how the UN operates to what members of our society can implement regarding policy to influence change and real results. I hope one day to have the opportunity to return to the UN and work for them. Thank you to Dr. Reuter for this opportunity, and thank you to my team for making this trip so memorable. I will never forget this opportunity and will definitely cherish it forever.

A 29th Floor Perspective

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 29^th 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 29^th floor. The perspective is much different up there.

The Division of Economic and Social Affairs (DESA) is located on the 29^th 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.

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.

Accessibility: A Paradigm Shift

I was given the opportunity to work as a rapporteur for the Conference of State Parties to the Rights of Persons with Disabilities (CRPD) at the United Nations in New York City. As a rapporteur, it was my duty to report on each event and assembly that I attended by drafting a summary of what took place respectively. I was able to attend the opening ceremony in the General Assembly Hall, which is where the meetings of the 193 Member States originally take place; an event on data mining, which is when one uses a large database to come to conclusions, and the importance of technology for persons with disabilities, where Dr. Reuter presented her research; a Roundtable Debate, where each party was able to ask questions and address any concerns they may have; and finally, a panel discussion with members, one of which was Dr. Reuter, who had the opportunity to present their findings from their research and answer questions from the audience.

When we were getting our duties and learning our roles, the Director for the United Nations Department of Economic and Social Affairs (DESA) Division for Social Policy and Development, Daniela Bas, came in to speak to us. It was a humbling experience, as she made an effort to get to know everyone in the room. I was also able to meet delegates from Canada, Zambia, and New Zealand. I remember Zambia’s representatives standing out specifically, for many reasons. Zambia is a country in southeastern Africa, where resources are limited. However, with the resources they have left, they have made efforts to allocate some of them to persons with disabilities. They also reported on their progress in implementing the CRPD, and it claimed to have many positive strides despite the fact that there is still much to be done.

During the Roundtable Debate, the issue of travel complications was raised. It was an eye-opening moment for me personally, as someone who loves to travel. I learned that a lot of individuals and families must plan business trips and vacations around accessible places and there will more than likely still be difficulties during their travels due to accessibility issues. Catalina Devandas Aguilar, who is the Special Rapporteur on the Rights of Persons with Disabilities then spoke on how there must be a greater political commitment to combat this issue. As the Special Rapporteur, she is trusted to be impartial and knowledgeable when she reports on a country’s trials. She was not speaking of a certain country in this case, but what she had examined across the globe. She also called for more respect, dignity, and a gender-equal approach when concerning persons with disabilities and the obstacles they face. It is important for all of these prongs to be met for persons with disabilities as they are seen as lesser or incapable at times. In reality, it is not feasible for persons with disabilities to accomplish something due to inaccessibility.

a picture of the stone wall outside of the UN — Photo by Tyler Goodwin

Prior to my week of working for the United Nations, I had a vague idea about how it was operated. I assumed it was similar to a business, but on a much larger scale. I imagined that the employees, directors, and delegates would be strictly focused on the Conference. I now have a small, but a clearer understanding of how the United Nations works. Those mentioned were certainly focused, but they were open to chatting and encouraging to others. Ms. Bas went out of her way to come speak to us, and the employees that I sat beside during the events were extremely welcoming and helpful. They asked about who I was, where I am from, and what I hope to accomplish one day. I expected to have to aggressively network to get to meet higher-up employees, but they were the ones who made the efforts to get to know me and the rest of the team. It changed my perspective of the United Nations in a positive way and fanned the fire inside of me to want to work there more. I was unsure of what a day at the United Nations would be like for an employee, and I only received a small glimpse of it, but I am thrilled to have gotten the experience.

Throughout the course of the Conference, I was able to see the importance of a global approach to handling persons with disabilities’ rights and implementing the CRPD. When it comes to a community so large and diverse, the United Nations must act cohesively to reach the 2030 agenda of sustainable development, and this Conference was a testament to their commitment. Doing so would ensure the world would be more accessible for all and lessen the issues faced by persons with disabilities.

This opportunity was heavily impactful for me. I was introduced to the world of the United Nations, and the humanitarian world outside of it. I met people who are involved in advocacy and fighting for rights around the globe, whether they are employed by the United Nations or not. I always envisioned myself being truly fulfilled by working for the United Nations alone, but I learned that there are many different outlets to accomplish the types of things I want to one day. It is still my end goal to be employed by them, but I have realized that I can have a fulfilling career. I am beyond grateful to Dr. Reuter for her research and advocacy, as she is truly making a difference. I am also grateful to have had her bring me along to experience the United Nations from the perspective I was given.

Reconciling Political Spectacle and Genuine Empowerment

a photo of Nick on the UN floor — Source: Nicholas Sherwood

Disability is widely defined. Disability is typically thought of an impairment (though this term is quickly falling out of the common lexicon) of the physical, cognitive, intellectual, developmental, or other types of day-to-day functioning in an individual. This convention marked the 10^th anniversary of the formal UN codification of the international rights of persons with disabilities, and this year’s programmatic focus was on the inclusion of persons with disabilities in decisions affecting their lives. In other words, persons with disabilities worked side-by-side with UN representatives and other officials to comment on the progress of their rights. UAB’s Institute for Human Rights, in conjunction with American University’s Institute on Disability and Public Policy (IDPP), presented research and policy direction.

This was my first time to visit the UN. Actually, my first time in New York City. Working with the United Nations has been a dream of mine since I was a young boy. I have dreamed of seeing the member states’ flags waving in front of the tall Manhattan skyscraper, hearing dozens of languages and dialects spoken, and of contributing to the founding principles of human rights and international governance. From inside the UN, the world is a much more complex place than the dream I had as a child. I will elaborate further.

As a rapporteur, I notated the official dialogue between state parties on their progress in implementing the Convention on the Rights of Persons with Disabilities. I heard and transcribed over 80 state parties’ efforts to include these persons in the local, regional, national, and international conversation on how to foster a more inclusive world for persons with mental and physical differences. The wording here is intentional because I am choosing not to see persons as ‘disabled’ but with features different from my own; thereby, reframing the perception and honoring their right as a human being first, rather than a disability.

In some cases, the effort was fantastic while others left must to be desired. Australia, in particular, has had tremendous success reaching out to persons with disabilities, especially in aboriginal tribes. NGOs publicly name other states whose efforts are praiseworthy. Public addresses, which are by nature political, served to motivate other ‘lacking’ states to imagine and implement faster, more effective, and more inclusive policies for persons with disabilities. The political game was on full display. Some states simply paid lip service to the CRPD. One state in particular, infamously known for blatant human rights violations bordering on genocide, implored the audience their commitment to human rights and their government’s special attention to persons with disabilities. States with an abhorrent human rights record, upon delivery of their ‘efforts to promote the rights of persons with disabilities’, received cold eye rolls and scoffs from other diplomats. In the official meetings of the State Parties, no love was lost between states who actually adhered to the Convention and states who only signed and ratified for political purposes. The political optics were on full display, and attentive audience members could typically discern authentic investment in the CRPD and inauthentic investment. This political game was in stark contrast to the side events present throughout the convention.

The official State Meetings of the CRPD take place simultaneously with presentations on specific issues to persons with disabilities and solutions created by NGOs, states, and members of civil society. These presentations, similar in execution and functioning to an academic research conference, disarmed the political machine of the UN in favor of real, boots-on-the-ground- efforts to include and empower persons with disabilities from across the globe. Throughout the three days the conference took place, I was awestruck by the tenacity and ingenuity of disabled and non-disabled persons alike in efforts to eradicate the ‘ability barrier’ throughout the world. I heard presentations on cities with universal design (built with accessibility for all persons with disabilities), e-participation in governance by persons previously unable to self-advocate for their rights, research that educates policymakers on the special needs of persons with disabilities, and the general promotion of human rights regardless of ability for all persons. Here, the political spectacle was negligible. These are real persons—with and without physically evident disabilities–working in all corners of the world to ensure “no one is left behind”. Any jadedness from the political spectacle of the official meeting of State Parties dissipates by the passion and ingenuity of all actors displaying their unique methods to ensure universal human rights for persons with disabilities. The breakout sessions were visionary and motivating, empowering and inspirational. The real action is located here, not in the lofty UN assembly meet rooms. The full expression of human rights finds protection and promotion by humans, not by institutions.

Moving forward, as a human rights student and peace advocate, I am still very much interested in a career with the UN. This experience though, assisting in conference presentations and serving as Court Rapporteur for official State Party meetings, left a few indelible impressions on me and changed by outlook and understanding of the UN. Prior to this UN trip, I placed absolute faith the UN system and its machinations. I believed the Conventions (on disabilities, women, children, etc.) enforced human rights. I believed the UN was a human rights ‘police force’ of sorts. I believed international governance was a smooth process and was fruitful in protecting human rights and promoting peace.

Now I understand people, not documents, protect human rights. International governance works when purveyor of rights–people–are vigilant and unrelenting in the protection of their dignity. For those who may not have the opportunity to self-advocate, such as persons with disabilities, we must not put words in their mouths or patronizingly speak for them. They can speak for themselves. We, the able-bodied population, must offer our louder megaphones to them to ensure their voices find expression. The UN works when we, the global community, work with institutions of all levels–local, regional, national, and international–to ensure “no one is left behind” in the pursuit of a world enshrining human dignity and respect. The UN is indeed an ideal but people have the real power. Realistic idealism, in this regard, may be the optimal method to promote and protect human rights. We, the people, owe it to all members of society to remain vigilant, purposeful, and passionate in our advocacy. The tireless self-advocacy of persons with disabilities at the 10^th anniversary of the CRPD is a poignant reminder that apathy and indifference has no home in even the most marginalized populations. As a student of human rights and a global citizen at large, this experience changed me for the better.