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.
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.
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.
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.
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.
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