A Need to Pave the Way Worldwide: International Disability Rights

November 7, 2018 | Johileny Meran, 2018 AAPD Summer Intern

The world has put a microscope on my disability, labeling it as the ultimate challenge, a tragic side effect of an illness or freak accident, something to pray about. But in reality, the challenge is living in a society that refuses to acknowledge that everybody is different.

Born in the Dominican Republic, I saw no positive examples of successful individuals with physical disabilities. It is only now, in my young adult life, that I can accept my disability as a positive aspect of my identity. For perspectives to change, we need to write ourselves into popular narratives. One issue is the portrayal of disabled persons on television. We are usually portrayed as helpless, a secondary or background character. As a senior in high school, I received a scholarship from an award show on the Univision channel. Afterward, at a basketball game, someone stopped me and asked if her son could take a picture with me. Through tears, she explained the powerful image of me on stage had encouraged him because he saw someone like him. A small act of representation can vastly change disability-focused media.

At the age of 8, I moved to the United States. Eleven years passed before I returned to the Dominican Republic. The difference was shocking. During my trip, I had to be dependent on family members. I couldn’t even step out of the house without two or three people helping to carry me out, and my wheelchair shortly behind me. I felt uncomfortable and discouraged by the reality that if I had grown up in my homeland, I would have never been able to accomplish the same level of independence. It shocked me to think of the stark difference my trajectory would’ve had. As my time on vacation in the Dominican Republic narrowed down, I thought about the kids that were growing up in that restrictive environment. I thought about the type of surroundings needed to develop empowered personalities.

This summer, I had the opportunity to learn about the Disability Integration Act (DIA), a piece of legislation that aims to ensures that disabled Americans have a right to live and receive services in their own homes. It contributes to the fundamental goal of the Americans with Disabilities Act (ADA): assuring the full participation of people with disabilities by allowing individuals to live in the most integrated setting possible. The DIA is still in its primary stages of the legislative process, but both pieces of legislation assert the difference that resources and supports can have on an individual’s ability to be part of their community.

Since the ADA was signed into law, there have been several legal cases regarding certain aspects of the law that impact the lives of people with disabilities. However, other countries like the Dominican Republic don’t have fundamental legislation that affords these rights and supports to fully participate in their societies.

I am determined to be part of a change that guides other countries to offer essential opportunities to children with disabilities that will allow them to reach their full potential. I have decided the way to do this kind of advocacy work is by establishing a career in international disability rights. In the simplest of terms, I would make it my life’s work to ensure that the same rights afforded to able-bodied citizens are just as accessible.

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Johileny Meran is a 2018 AAPD Summer Intern. She interned with the National Disability Rights Network.

Increasing and Expanding Employment Opportunities for People with Disabilities Worldwide

October 22, 2018 | Luanjiao (Aggie) Hu, 2018 AAPD Summer Intern

People with disabilities make up about 10 to 15 percent of the world population, according to the World Report on Disability. As a massive number of people, our community faces many challenges globally, in the realms of education, employment, health care, and relationships, among others. I am particularly invested in employment issues for people with disabilities for two reasons: 1) my work with the ADA International Fellowship Program on inclusive employment, sponsored by the U.S. Department of State and administered by the Association of University Centers on Disabilities (my placement in the AAPD Summer Internship Program), and 2) a conversation I had with Dr. Richard Lytle, formerly of Gallaudet University and a social entrepreneur who is pushing inclusive employment for people with disabilities in China.

It is no news to many that people with disabilities have lower employment rates than those without disabilities globally. “The unemployment rate among adult Americans with disabilities who want to work and can work is over 60%! That is a blot on our national character,” commented Senator Tom Harkin at his farewell speech to the Senate. In some Asia-Pacific countries, the unemployment rate of people with disabilities is as high as over 80%. Researchers have documented the severity of the issue and the importance of employment, especially for marginalized populations. I myself have witnessed how employment discrimination takes place towards people with disabilities in China: a woman with physical disability applying for a software programmer position was denied the interview opportunity when she disclosed her disability to the potential employer; a deaf designer was turned down for a job because of the employer’s claim that their workplace requires a significant amount of verbal communication, despite his excellent designing skills; a person with disability is paid only half the amount a non-disabled coworker receives for the same position. The list of discriminatory examples goes on and on.

Increasing and expanding employment opportunities for people with disabilities is indeed a global concern. From Africa, to Asia, to the Americas, we face similar issues — albeit at slightly different severity levels based on our unique cultural and national contexts. Facilitating exchanges and conversations on best practices among leaders of inclusive employment between different countries, a practice exemplified by the ADA International Fellowship Program, is one of the many ways we can address this global issue. Using one’s multiple talents and network to embark on social enterprises like Communication Access (a business organization that works with multinational corporations in China to hire, train, and retain people with disabilities in workplaces; founded by Dr. Richard Lytle) is another way individuals can contribute in pushing for more meaningful employment for people with disabilities. In both cases, I see the value of collaboration across national borders in addressing employment issues for people with disabilities. Looking beyond one’s national context to see new possibilities and ways of thinking helps inspire us to create more innovative approaches and models that move us closer to our ultimate goals.

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Luanjiao (Aggie) Hu is a 2018 AAPD Summer Intern. She interned with the Association of University Centers on Disabilities.

My Take on the CRPD vs. Marrakesh Treaty

September 24, 2018 | Chris Damon-Chronmiller, 2018 AAPD Summer Intern

The following is a culmination of the work I have done this summer as part of my internship with AAPD. Through my internship this summer, I became aware of an international agreement of sorts known as the Marrakesh Treaty. This agreement aims to improve access to print documents for print-impaired individuals. To my surprise, I learned that not only did it have bipartisan support, but that it passed unanimously without amendment. Needless to say this is starkly different from my previous experience with international agreements.

Back in my undergraduate career I held an internship with the U.S. International Council on Disabilities (USICD), and I interned for them again briefly when I was in graduate school. When I first worked with USICD, one of their top priorities was centered around the Convention on the Rights of Persons with Disabilities (CRPD), which President Obama had signed in 2009. Like the Marrakesh treaty, the CRPD also had bipartisan support, with loud champions from both sides of the political aisle. Furthermore, in the words of USICD, the U.S.’s own Americans with Disabilities Act (ADA) served as the direct inspiration for the work of the CRPD, which arguably serves to expand the ADA internationally – resulting in easier international travel and ability to work overseas for Americans with disabilities. However, in 2012, U.S. support for the CRPD fell short of the super majority typically required for ratification of treaties when it came to vote.

Why, then, did the U.S. support one agreement with flying colors while taking such a reserved stance on the other? The simple answer is that one is affiliated with the United Nations, and the other is affiliated with the World Intellectual Property Organization (WIPO). In my opinion, though, the more complicated answer is that the CRPD opens up a can of worms that the disability community long thought had been buried with the passage of the ADA. In particular there are some concerns considering health that plague (no pun intended) both pieces of legislation. With the ADA, it was the predicament of whether HIV/AIDS constituted a class that deserved protection. Now, with the CRPD, the supposed question is whether persons with disabilities are granted special access to abortion services. The question as to the ethics of abortion as a whole is one that I am simply not equipped to answer or address, but that is what some advocates are focused on.

It probably goes without saying that this post is a gross oversimplification of the issues surrounding the Marrakesh treaty and the CRPD, along with my opinion on both. I look forward to devoting further analysis on the topic in my spare time.

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Chris Damon-Cronmiller is a 2018 AAPD Summer Intern. He interned with the Office of Senator Ed Markey (D-MA).

ASL Poetry Night to Support Disaster Recovery for the Deaf and Hard of Hearing

October 5, 2017 | Leah Katz-Hernandez, AAPD Board Member

This week we are wrapping up the Hispanic Heritage Month. It has been a difficult month for Latinos with disabilities as we watch the devastation of natural disasters happen to our family and friends in both Mexico and Puerto Rico.

We know that people with disabilities are four times more likely than other people to die if natural disaster strikes and our ability to evacuate and receive urgent information is more difficult.

In recovery, people with disabilities face more risk and danger as they are more likely to be left behind and struggle to get critical information or resources on time.

It is not too late to make a difference for people with disabilities in affected areas!

In Washington, D.C., there is a grassroots movement to allow the community to come together and make a powerful contribution towards inclusive recovery efforts.

Latino Deaf Hard of Hearing Association of Metro DC is hosting a DC American Sign Language Poetry Night & Silent Art Auction on October 6th at 6:30pm – you can make a donation online if you can’t attend!

The central values behind our event is to display deaf Latino heritage and to show community caring. 100% of the proceeds will directly benefit International Deaf Emergency and Off-The-Grid Missions, Inc, in coordination with Portlight Inclusive Disaster Strategies.

Purchase tickets or donate here!

AAPD is proud to be a Co-Host of this event to support disaster recovery for people with disabilities in Mexico and Puerto Rico.

Disability-Inclusive Disaster Risk Reduction

May 22, 2017 | Abi Marutama

Disaster risk reduction has been trending for the past few years as the world faces climate change and man-made disasters leading to the increased number of hazardous disaster occurrences. Among the groups most vulnerable to disaster are people with disabilities. It is estimated that one billion people (equal to 15% of the global population) have disabilities and most of them live in the developing world where they suffer from extreme poverty and developmental exclusion.

When it comes to disaster risk reduction, persons with disabilities are often left behind and their capacities are often underestimated – they are more likely to be adversely affected by hazards than persons without disabilities. Children and women with disabilities are also more vulnerable in time of disaster because their needs may not be fully met. Persons with disabilities will likely experience more difficulties due to environmental changes caused by disaster and inaccessible refugee shelters. Even worse, they may experience more morbidities, disabilities, or even mortality due to hazards.

There is a study conducted by the United Nations Office for Disaster Risk Reduction (UNODRR) that shows poverty as a major driver to the increase in disaster risk for the poor. The poor are more likely to lack information, disaster preparedness tools, and the capacity to build their settlements in hazard-free areas. Meanwhile, the rich may gain complete information related to early warning systems and disaster risk mitigation. They also have access to disaster preparedness tools. Access to education and economic resources contributes significantly to disaster risk mitigation.

Persons with disabilities are less likely to have access to information and disaster preparedness tools because they live in poverty and are less educated. The World Bank study shows that poverty is either the cause or the consequence of disability. For example, the poor may not be able to have quality sanitary systems, water, or nutrition. This situation leads people to suffer malnutrition and they may be exposed to communicable and non-communicable diseases leading to disabilities and morbidities. The poor may also suffer from hazards due to high-risk disaster leading to the increased number of people with disabilities.

Disability also contributes to extreme poverty. For example, when a person experiences a disability, she or he may lose her/his job or opportunity to receive education. This situation may lead her/him to extreme poverty. As a poor person, she/he might not be well informed of high-risk disaster and hazards in her/his area. As an adverse result, she/he might be killed or experience more disabilities.

Making disaster risk reduction more inclusive for everyone is crucial because disaster threatens every life without exceptions, including those of persons with disabilities. Therefore, there is no excuse in excluding certain groups of people when disaster is one of the key issues in the Sustainable Development Agenda in which everyone must be heard and engaged in order to achieve quality development goals. The UN and the international community have global platforms to ensure that persons with disabilities are fully engaged. The SDG 11 on Urban Development, The New Urban Agenda, and the Sendai Framework for Disaster Risk Reduction specifically call state parties to be proactive to promote disability rights and particularly disability-inclusive disaster risk reduction programs. Both The New Urban Agenda and the SFDRR recognize the role of civil societies including persons with disabilities to take part in mitigating disaster risks. Some countries in Asia, where disaster occurs frequently, have showcased good practices in which disabled persons can be agents of disaster risk mitigation and disseminate the importance of disaster risk reduction for everyone.

For example, in Indonesia, the Centre for Disability Research and Policy at the University of Sydney in partnership with Arbeiter-Samariter-Bund (ASB) conducted a project on including people with disabilities in disaster risk reduction (DRR). Five disability-inclusive disaster risk reduction programs were successfully conducted, resulting in people with disabilities being more aware of disaster risks.

During the Asian Ministerial Conference on Disaster Risk Reduction in December 2016, Indonesia highlighted Disabled People Organizations’ (DPOs) involvement in DRR. They actively work at the grassroots level and their involvement is recognized in DRR-related policy development and implementation. Furthermore, persons with disabilities are recognized to have capacities to contribute to building community resilience and to improving the community following disasters.

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Abi Marutama is a disability rights advocate from Indonesia completing a Fellowship with AAPD as part of the Young Southeast Asian Leaders Initiative through the State Department. He is a person with visual impairment since he was born. He works as the legal and treaty advisor for the Indonesia Ministry of Health. His job is related to disability issues, especially sexual reproductive health for the disabled, healthy and accessible urban development, preventing of disability by ending malnutrition, global cooperation on assistive health technology, and more. He has been working closely with UNHABITAT, UNESCO, WHO, UNDESA, and the Korean government to make policy intervention more inclusive in the South East Asia region, and particularly in Indonesia.

Creating Bridges Where Barriers Once Stood

July 29, 2016 | Kristin Duquette

What value can a human being provide to others? I constantly ask myself this question as I’m attentively observing how we all interact with each other. Over the years, in addition to recently speaking at the United Nations, I’ve come to the conclusion that value can stream from our words and voices.

I had the privilege to speak at the United Nations Headquarters on July 15th for the World Youth Report on Youth Civic Engagement. My topic focused on community engagement, particularly with young women with disabilities, in relation to sport development. With only a few weeks’ notice, a speech was written, travel logistics completed, and off I went to share the stage with Ms. Daniela Bias, the UN Director of Economic and Affairs, UN Assistant- Secretary Generals Mr. Montiel and Ms. Puri along with two field experts, Mr. Graeff and Mr. Perlin. That’s quite a starting line-up!

Launch of the World Youth Report entitled “Youth Civic Engagement”
(organized by the Department of Economic and Social Affairs (DESA))
– Kristin Duqeutte, 5x American Paralympic Record Holder, former US Team Captain for the 2010 Greek Open, and 3x Junior National Record Holder in swimming gives her remarks.

In the words of the United Nations, “the World Youth Report on Youth Civic Engagement explores young people’s participation in economic, political and community life, responding to growing interest in, and an increased policy focus on, youth civic engagement in recent years among Governments, young people and researchers. The Report provides thematic insights on economic, political and community engagement, coupled with expert opinion pieces so as to provide robust and varied perspectives into youth engagement.” For the 2016 Launch, Chapter 4 of the Report discusses youth civic engagement and highlights the use of sport development as a tool to assist vulnerable groups, particularly young women and people with disabilities, in overcoming barriers.

Regarding the disability community and sport engagement, the report authors state, “Involving young persons with disabilities in sporting activities challenges what communities think about disability while also challenging the perceptions those with disabilities may have about themselves. In doing so, stigma and discrimination are reduced, and the skills, confidence and potential of youth with disabilities are realized. In addition, sporting activities can provide a meeting ground for young people with and without dis-abilities to come together in a positive environment, learn from each other, and help eradicate preconceived notions of disability by focusing attention on the varying abilities of all youth.”

Saying that it was an honor to speak about this issue and provide recommendations to the UN system is an understatement. I am a former athlete in the Paralympic Movement and a human rights major. My honors senior thesis focused on whether disability rights are viewed as human rights on a global level with particular focus on Article 30.5 (to encourage physical activity and sport) of the CRPD. Needless to say, I was honored to share my personal experiences, combined with research on the importance of physical activity and sports for young girls and women relative to community civic engagement. To put it simply, I’m deeply grateful to have provided my voice regarding an influential topic on a global stage.

More on the The World Youth Report on Youth Civic Engagement here.

As those of us with disabilities know, the disability experience can be like a rollercoaster ride – highs and lows. Acceptance is often interspersed with intolerance. For example, during my flight back from the United Nations to DC an older couple asked me to “get up and move” from my aisle seat so they could sit down next to me (in the middle and window seats). Without a beat I stated how I cannot stand nor walk. Once seated and situated, the couple eventually decided to move to a different row. Looking back on this situation, I felt personally disrespected but more so embarrassed for their narrow mindedness and how they viewed a person with a disability. I was someone similar to them and so many others on that flight who was simply trying to make her way home.

Although we live in an exciting time with societal changes which better the disability community, we’re still experiencing a paradox-like world. In one atmosphere, people with disabilities are celebrated for their talents, accepted, and equally engaged with others, while in another, those same persons experience ablest comments ostracizing them for who they inherently are.

What I love most about the disability community, however, is our ability to speak our minds while creating bridges where barriers once stood. Whether on an international level at the United Nations or at a table in a restaurant, I’ve learned that my voice matters. One of the most valuable pieces of advice I was given from my mentors and role models within the disability community is to bring light to issues on all levels in order for all of us to collectively unify, acknowledge, and own our identity and experiences. We all can continue to teach those willing to engage and listen, especially those in the next generation. They are the ones we can count on to respect the people who occupy the aisle seats in life.

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Kristin Duquette is a former AAPD Summer Intern.

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