Right now, our group of U.S. exchange participants are on our way to Eastern Europe! Those of us from Chicago were all on the same flight to Amsterdam. That includes myself, Kristen, Jacquie Algee, Joanna Brown, Regina McGraw and Ronnie Harris. From here, some of us will continue to Sofia, Bulgaria and some of us will continue to Bucharest, Romania. Everyone is excited to be on the way.
It takes about seven hours to fly from Chicago to Amsterdam and we emerged from our plane sleepy eyed but ready to navigate Schiphol Airport. After taking group pictures, we headed to...Starbucks. Yes. Well, coffee is coffee! The poor sleepy barista who took my order and my name misremembered me as "Barbera." That's a new one. Folks are having a great time getting to know each other over coffee and then we will head to our gates.
It is morning here in Amsterdam and the sun has risen, though it was still dark when we landed and we could only see the lighted outlines of the waterways. Sometime I will have to come back here and visit the Rijksmuseum. For now I have to stay content with looking at the orange Netherlands souvenirs! In just an hour and a half Kristen, Joanna, Regina, Leah and I will board for Sofia.
When there is more down time I will be figuring out how to upload some pictures. For now we are looking forward to saying "dobuhr den, Sofia!"
Saturday, February 13, 2016
Thursday, February 11, 2016
Packing
Tomorrow is the day we leave to fly to Bulgaria!
When this trip is over, I will have forgotten how much work it is to pack for nearly three weeks overseas. Mainly, it's a lot of planning. Kristen the ASL interpreter and I have been exchanging messages on what to pack. Not too much, but don't forget anything. This trip is a little bit unusual because I must include:
Today, my wonderful co-workers will begin taking on key tasks I normally do. I really have to thank everyone at Access Living because as a director, my responsibilities are heavy and it is a lot to ask others to take on. However, international exchange is important to Access Living and I feel very lucky to work there.
Tonight, I take my cat to Reba's house, where she will stay while I am away. Thank you Reba! And I will begin the final packing of all my stuff. Kristen and I are very excited to begin our adventure tomorrow afternoon.
When this trip is over, I will have forgotten how much work it is to pack for nearly three weeks overseas. Mainly, it's a lot of planning. Kristen the ASL interpreter and I have been exchanging messages on what to pack. Not too much, but don't forget anything. This trip is a little bit unusual because I must include:
- Materials from Access Living and the disability/Deaf community in the US
- A bathing suit
- Boots for snowy/rainy weather
- Light things for being overheated
- Warm things for being cold
- Rain gear
- Something to wear to the opera (yes!)
- Plus everything you would normally take on a trip to another country (passport, converters, etc)
Today, my wonderful co-workers will begin taking on key tasks I normally do. I really have to thank everyone at Access Living because as a director, my responsibilities are heavy and it is a lot to ask others to take on. However, international exchange is important to Access Living and I feel very lucky to work there.
Tonight, I take my cat to Reba's house, where she will stay while I am away. Thank you Reba! And I will begin the final packing of all my stuff. Kristen and I are very excited to begin our adventure tomorrow afternoon.
Wednesday, February 10, 2016
What is a Disability?
The image above is of a group of about 25 disability advocates from Illinois at an event for the feminist disability group FRIDA, protesting the death of a young black woman with a disability named Dorothy Dixon. They are holding a red banner with the word FRIDA on it and raising their fists in salute. They have many kinds of disabilities, different races and different gender identities.
Those who are unfamiliar with the disability movement often assume that there is a clear and simple definition for disability. This would be mistaken. Within one country there can be competing definitions of disability, and certainly across countries the concept of disability can vary. The simple word "disability" can also be very different, not simply in language, but in meaning.
Disability advocates have argued heatedly for years over the true definition of disability, given the need to frame it in legal, social, religious and other contexts.
The World Health Organization (WHO) defines disability as "an umbrella term, covering impairments, activity limitations, and participation restrictions. An impairment is a problem in body function or structure; an activity limitation is a difficulty encountered by an individual in executing a task or action; while a participation restriction is a problem experienced by an individual in involvement in life situations." (See this link).
The United Nations Convention on the Rights of Persons with Disabilities (UN CRPD) in its Preamble states that disability is "an evolving concept and that disability results from the interaction between persons with impairments and attitudinal and environmental barriers that hinders their full and effective participation in society on an equal basis with others." (See this link)
The Americans with Disabilities Act, passed in 1990, provides this definition: "An individual with a disability is defined as a person who has a physical or mental impairment that substantially limits one or more major life activities, a person who has a history or record of such an impairment, or a person who is perceived by others as having such an impairment." (See this link)
Personally, I like the idea of disability as an evolving concept. Certainly societies are structured in many ways that make equality difficult for people with disabilities. I also think that one's own perception of disability, whether one's own disability or that of others, changes over time. Self-perception of disability can involve varying amounts of shame and pride. It can also be informed by the history of the disability movement. For myself I am glad to take what is in the US the civil rights term that protects us: disability. I have hearing loss. I am disabled, I have a disability. But I also identify with Deafness, I am a woman, I am many things.
A note on the Deaf world: Many, if not most, Deaf people may say that being Deaf is not in itself a disability. I would agree. It is a different modality, a visual mode. However the fact remains that Deafness in US law has weaker protections than disability. Civil rights protections for linguistic groups is much weaker than for disability groups. Since hearing loss is a disability, I claim both: one for living in a visual mode, and the other because it affords civil rights protections that make my life possible.
What carries us forward for social change is, as Cheryl Marie Wade said, the process of "naming and claiming who you are." Living out loud, making yourself known.
Monday, February 8, 2016
Global Work and Access Living
At Access Living, global solidarity matters.
Having worked at Access Living for more than a decade, I know that we have a tradition of welcoming international visitors with and without disabilities. Since Access Living was founded in 1980, hundreds of people from around the world have come to meet our community and view our offices. People come to share ideas, learn about what we do, and most of all connect with disability advocates who fight for the disability movement every day in one of the biggest cities in the United States. Access Living is led by and for people with disabilities, and given that over 60% of our staff identify as having a disability, we are the models for the lives we want to live.
We have also been involved in global disability rights advocacy. Access Living’s President and CEO, Marca Bristo, has been extremely involved in international disability issues for many years, and was one of the leaders to fight for the U.S. Senate to ratify the United Nations Convention on the Rights of Persons with Disabilities (UN CRPD). Sadly, the U.S. has still not ratified the treaty, for reasons that have less to do with disability rights than for political issues in other arenas.
Many of our staff have participated in international exchange trips, most recently to Tunisia, Morocco, Egypt, Kazakhstan, and others. Some have participated in one-way trips to, for example, Taiwan and Japan. Professor and writer James Charlton wrote the book Nothing About Us Without Us on international disability rights, while serving as Access Living’s executive vice president. In 2008, thanks to the generosity of the Chicago Foundation for Women, I visited Australia, New Zealand and South Korea to discuss the situation facing women with disabilities.
So the question at the beginning of the travel is this: where are you going? Where, and what, is Bulgaria? And where and what is Hungary? Many, if not most, residents of the U.S. could not name the capitals of either countries, much less describe the political and economic system, or their histories of the last 50 years. Far fewer could tell you the situation of people with disabilities in either country. And yet there are certainly thousands of Bulgarians and Hungarians who have made their way to the U.S. to live. There are thriving communities from both countries in Chicago, with churches and grocery stores.
For readers following along who are not familiar with Bulgaria or Hungary, try reading the Wikipedia page in English for each (see here for Bulgaria and here for Hungary). Both countries are far older than the U.S., with fascinating histories and cultures. The borders of both countries have shifted greatly over time. Who is Hungarian? Who is Bulgarian? These are essential questions, as is: who is American? Who and what is a human being?
To learn and live: this is what Access Living does every day, and some days we are lucky to do it with our global brothers and sisters.
Sunday, February 7, 2016
Opening the Window
Last summer, in August 2015, I was contacted by Lori Clark of the Jane Addams Senior Caucus (JASC). Lori wanted to know if Access Living would like to host two international exchange fellows for a month starting in October. The program was called the Professional Fellows Program, and focused on advancing advocacy and organizing for social change.
The first candidate, Stoyan Pavlov, was a resource teacher for students with disabilities in Bulgaria, and a leader in Bulgaria's National Association of Resource Teachers (NART). NART was gathering strength to push for government reforms to improve disability education. The second candidate was a Hungarian woman named Anett Csordás, coordinator of the group Lépjünk, hogy léphessenek, which focused on supporting families of children with cerebral palsy (CP). Anett herself is a mother of two children, one of whom has CP. She also had a background in drama and teaching, and had already done grassroots campaigns on disability awareness and improving the government stipend for parents providers. Both Anett and Stoyan were highly interested in furthering inclusive education.
At first, I thought that coordinating a one-month visit might be too much for Access Living to handle. Then I read Stoyan and Anett's stories, and I was impressed with their potential to take disability organizing in their countries to the next level. I felt that we should try our best to make the arrangements and see how it turned out.
After internal discussion at Access Living, it was decided that I would serve as the main coordinator for Stoyan and Anett's visit. Two host families were secured for Stoyan---the Lopezes and the Willages---and Access Living education advocacy staffer Rod Estvan, who is Hungarian American and a parent of an adult daughter with a disability, agreed to host Anett.
Anett and Stoyan arrived in early October along with the rest of their cohort from Bulgaria, Hungary, Slovakia and Romania. The cohort members were split up among several community organizing groups across the U.S., and would re-form after the monthlong fellowship with a two week stay in Washington, DC.
To make a long story very short, over the course of four weeks at Access Living, Stoyan and Anett visited with disability advocates at multiple levels in Chicago, and participated in actions and community events. I had asked if they wanted to be busy or to have a slower schedule, and they said they liked to be busy, so we had a VERY busy schedule. They gathered information to take back home to share with their communities, and connected with new friends in Chicago. Access Living staff felt they were "our people" which is a big compliment.
Once Stoyan and Anett returned home, preparations began for the U.S. hosts to visit Eastern Europe. And that is the point where this blog begins. In less than a week, on Friday February 12, I will travel with American Sign Language interpreter Kristen Gaspar to begin our time learning about community organizing and disability work in Bulgaria and Hungary. We will be traveling with different groups of the U.S. community organizers (see About This Exchange).
Those of you who are curious about disability work in Bulgaria and Hungary may be curious to read those countries' states' parties reports to the United Nations Committee on the Rights of Persons with Disabilities. You can search for the reports from Bulgaria and Hungary at this link.
While the trip will certainly involve meetings with disability and Deaf groups, the primary purpose of the exchange is to learn what people are doing to make their societies better. During the trip, I will be posting updates to this blog for those following in English. I will be sharing photos on the blog, but likely not as many as I will post to Facebook on my personal account. The purpose of this blog will be to capture a sense of the activities of the coming weeks, and some impressions. Consider it a snapshot of the act of learning.
One further thought in preparation: one can view the work of organizing as the act of awakening. I believe that Stoyan and Anett are doing this work, and I know that we at Access Living do this awakening work every day. I am curious to learn what that looks like in Eastern Europe, and what lessons can be brought home to Chicago. Looking forward to seeing everyone soon!
The first candidate, Stoyan Pavlov, was a resource teacher for students with disabilities in Bulgaria, and a leader in Bulgaria's National Association of Resource Teachers (NART). NART was gathering strength to push for government reforms to improve disability education. The second candidate was a Hungarian woman named Anett Csordás, coordinator of the group Lépjünk, hogy léphessenek, which focused on supporting families of children with cerebral palsy (CP). Anett herself is a mother of two children, one of whom has CP. She also had a background in drama and teaching, and had already done grassroots campaigns on disability awareness and improving the government stipend for parents providers. Both Anett and Stoyan were highly interested in furthering inclusive education.
At first, I thought that coordinating a one-month visit might be too much for Access Living to handle. Then I read Stoyan and Anett's stories, and I was impressed with their potential to take disability organizing in their countries to the next level. I felt that we should try our best to make the arrangements and see how it turned out.
After internal discussion at Access Living, it was decided that I would serve as the main coordinator for Stoyan and Anett's visit. Two host families were secured for Stoyan---the Lopezes and the Willages---and Access Living education advocacy staffer Rod Estvan, who is Hungarian American and a parent of an adult daughter with a disability, agreed to host Anett.
Anett and Stoyan arrived in early October along with the rest of their cohort from Bulgaria, Hungary, Slovakia and Romania. The cohort members were split up among several community organizing groups across the U.S., and would re-form after the monthlong fellowship with a two week stay in Washington, DC.
To make a long story very short, over the course of four weeks at Access Living, Stoyan and Anett visited with disability advocates at multiple levels in Chicago, and participated in actions and community events. I had asked if they wanted to be busy or to have a slower schedule, and they said they liked to be busy, so we had a VERY busy schedule. They gathered information to take back home to share with their communities, and connected with new friends in Chicago. Access Living staff felt they were "our people" which is a big compliment.
Once Stoyan and Anett returned home, preparations began for the U.S. hosts to visit Eastern Europe. And that is the point where this blog begins. In less than a week, on Friday February 12, I will travel with American Sign Language interpreter Kristen Gaspar to begin our time learning about community organizing and disability work in Bulgaria and Hungary. We will be traveling with different groups of the U.S. community organizers (see About This Exchange).
Those of you who are curious about disability work in Bulgaria and Hungary may be curious to read those countries' states' parties reports to the United Nations Committee on the Rights of Persons with Disabilities. You can search for the reports from Bulgaria and Hungary at this link.
While the trip will certainly involve meetings with disability and Deaf groups, the primary purpose of the exchange is to learn what people are doing to make their societies better. During the trip, I will be posting updates to this blog for those following in English. I will be sharing photos on the blog, but likely not as many as I will post to Facebook on my personal account. The purpose of this blog will be to capture a sense of the activities of the coming weeks, and some impressions. Consider it a snapshot of the act of learning.
One further thought in preparation: one can view the work of organizing as the act of awakening. I believe that Stoyan and Anett are doing this work, and I know that we at Access Living do this awakening work every day. I am curious to learn what that looks like in Eastern Europe, and what lessons can be brought home to Chicago. Looking forward to seeing everyone soon!
Image description: four people stand shoulder to shoulder. From left to right: Stoyan Pavlov with dark hair and a red shirt that says "Element", Amber Smock with short red hair, a navy blue cardigan, and a pink white and blue top, Anett Csordás with blond hair and a black shirt and sweater, and Rod Estvan with short gray hair, a moustache and goatee in a light/dark gray shirt. They are standing in front of purple and white Access Living signs.
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