Disability Rights in Poland: An Account of our Process of Discovery

By HIA Fellows: Jan Świątek, Mariana Pryven, Cariad Chester

Our blog is a day-by-day recounting of the journey that led us to produce our workshop and focus on autism within the spectrum of physical and mental disabilities. We hope you enjoy a window into our creative process and learn a thing or two along the way.

14/Jun/2013 - Day 1: Our team met for the first time and we immediately began discussing how to narrow our focus within the field of disability rights. We were initially interested in building
a workshop that addressed the challenges people with physical disabilities face in everyday life. We felt like students would easily see the injustice in situations where people with disabilities could not access public spaces or buildings. Drawing attention to the need for more access ramps, elevators, and disability accommodations presented a variety of opportunities for engaging workshop ideas. However, upon further discussion, we decided to try to focus on mental and intellectual disabilities because one of our team members, Jan Świątek, has a sister with autism. While focusing on autism, we hoped our workshop would serve to generate conversation around the rights for people with disabilities in a way that included both physical and mental/intellectual disabilities. After an hour and a half of research on different mental disabilities, we agreed that autism would actually be an ideal (but dauntingly complex) way to focus our presentation. The societal position of people with autism provides a valuable lens through which to analyze the broader concept of rights for people with disabilities. Autism is poorly understood in Polish society (and globally) and we hoped to simultaneously raise awareness about the disorder while facilitating a discussion on disability rights.

15/Jun/2013 - Day 2: Our day of training focused on the importance of including different learning modalities in our workshop. Different learning modalities would not only help a wider audience of students engage with our material, but would also force us to be creative in how we presented our information. We began brainstorming a list of different exercises and games that we could include in the workshops. Our favorite idea was an exercise that had the students participate in a mock press conference at the end of the workshop. Primarily, the press conference allows students the opportunity to develop public speaking skills and helps them learn to articulate their positions in response to questions. We ended the day by comparing notes on the resources on autism that we had individually found. We were struggling to find quantitative information on the challenges that people with autism face. However, our personal understandings of the disorder have improved dramatically.

17/Jun/2013 – Day 4: After multiple days of online research, we began contacting people who work on disability rights professionally. Magda Szarota, one of the leaders of the Association of Women with Disabilities ONE.pl, advised us to reach out to two NGOs in Poland known for their work on autism. In the process of researching the NGOs, we learned that autism, and not autism spectrum disorder (ASD), is still the dominant name used by advocacy organizations when discussing the disorder. We wonder how often the distinction is made between autism, ASD, and other developmental delays (e.g. PDD-NOS). Unfortunately, we suspect discussions of autism rarely receive the nuance they deserve. Finally, we emailed a Polish specialist on autism, Professor Ewa Pistula of Warsaw University, and expressed interest in interviewing her. We also discussed the possibility of incorporating visual media into the presentation. After screening different YouTube videos on autism, we settled on two videos produced by the Synapsis Foundation. The videos attempt to depict the experiences and perceptions of someone with autism as they navigate public transport.

18/Jun/2013 – Day 5: After the morning presentation and reflecting on the feedback, we continued developing our workshop. We have begun working on how to categorize the different barriers that people with autism face in Polish society. In our workshop, we hope to address both structural barriers and the barriers created by confusion and misunderstanding of what it means to have autism. We have created a possible structure for our workshops build around these aims. In the first workshop, we will present both an internal and external perspective on autism and attempt to provide a basic understanding on what it is like to have autism. The second workshop will attempt to have the students think about how access to education, healthcare, and employment opportunities may be restricted for people with autism. We are also interested in incorporating the UN Convention on the Right for Peoples with Disabilities into the workshop and specifically addressing the articles that enumerate rights on education, health, and employment. This might prove too time intensive or intellectually demanding for our target audience and limited schedule, but at the very least, the research was an important step in our personal understanding of disability rights.

19/Jun/2013 – Day 6: We heard back from the Synapsis Foundation and scheduled an interview with the Advocacy Team Manager, Dr. Agnieszka Rymsza. In preparation for the interview, we began gathering a list of questions for Dr. Rymsza. The questions focus on the barriers that people with autism face in Polish society and the role of NGOs in effecting societal change. The rest of the day was spent completing the PowerPoint presentation for our workshop and drafting the structure of our paper.

20/Jun/2013 – Day 7: Our team traveled to Southern Warsaw to conduct our interview with Dr. Rymsza. She was very inspiring and graciously answered all of our questions over a two-hour period. The general impression from the interview was that the state of autism in Poland is an example of profound injustice, but incremental improvements are being made by successful lobbying efforts. Dr. Rymsza provided useful information on what she perceives as the largest barriers people with autism face and also discussed her advocacy efforts. Hearing Dr. Rymsza list the legal battles that have been won was inspiring; the Synapsis Foundation is a powerful testament to the potential impact of a committed NGO. Dr. Rymsza also connected us with Alina Perzanowska, President of the “Community of Hope” Foundation. We had previously read about the “Community of Hope” Foundation in the context of their work launching The Life Farm,
a holistic center for people with autism. From what we can tell, the Farm is the only organization of its kind in Poland and a compelling alternative to traditional treatment. The Farm is
a permanent residential establishment for people with autism and in addition to providing treatment and a positive social environment, employs the residents in farming organic produce. We scheduled an interview with Ms. Perzanowska for tomorrow morning and began preparing
a list of questions for her.

21/Jun/2013 – Day 8: We began the day with a presentation of our workshop to the HIA Poland staff and Marta Brzezińska-Hubert, a multicultural trainer and facilitator of learning. The feedback we received was instrumental in aligning the focus of our workshop with the goals of HIA. We are confident we can incorporate the feedback we received into our workshop and make it stronger.

22/Jun/2013 – Day 9: Continued writing our paper. We focused on reformatting our presentation to improve the link between the human rights atrocities of World War II and the contemporary situation of people with disabilities in Polish society.

24/Jun/2013 - Day 10: Our team met to make the final revisions. We also had to determine what to leave in the workshop and what to remove, accounting for time, target audience and our aims. We focused on the element of empowerment and introduced a task of drafting a law to counteract the World War II discrimination against people with disabilities. The exercise will serve as a link between the past discriminations and the human rights education. An excerpt from the UN Convention of 2006 will be presented after the students’ ideas and will show them the full range of the rights promised to the people with disabilities. Students will then be divided into groups and work on creating more detailed laws addressing the areas of education, health care, and the labor market. The paper will complement our second workshop and also serve as a valuable resource to provide more information on the topic. We look forward to our presentation and hope that our efforts are well received.

Very interested in this topic? We have a related blog post for you:

Overcoming Barriers...of Stereotypes