I had the opportunity to attend the "Approaching the Reality of People with Disabilities" seminar's 10th-anniversary event at the University of Tokyo, a special session titled "The Reality of Disabilities × The Reality of University Students." The event featured moving lectures from special guests. Each speaker emphasized the importance of living authentically and the societal need for mutual understanding and support to protect the rights of people with disabilities and build a future where we can coexist. Below is the detailed attendance report.
Opening Remarks by Professor Kazuhiro Nozawa: The seminar began in 2013 and has been managed by volunteer students. It focuses on the broad "hardships of living" faced by people with disabilities and addresses issues related to disabilities without taboos. The seminar aims to connect with the real lives and experiences of people with disabilities and stakeholders, stressing the importance of listening to each individual's thoughts and maintaining a perspective centered on those with disabilities.
Special guest lectures from Mr. Okabe and Ms. Sato, who are ALS patients. Ms. Sato explained about ALS. Despite their condition, Mr. Okabe and Ms. Sato have established the NPO "Beyond Boundaries" and are actively involved. ALS is a progressive disease that impairs the nerves that move muscles, causing difficulties like breathing problems. About 10,000 people in Japan are affected, and while there is no cure, 30% of patients require respirators due to severe progression within 2-5 years. Economic reasons or personal choices sometimes lead to patients forgoing respirators. As the disease progresses and mobility decreases, patients must continuously choose to live.
Words from special guest Mr. Okabe, an ALS patient: While effort can lead to achieving goals, it's not always rewarded. It's essential for everyone to live in their own way. Finding meaning in life isn't just about striving but cherishing every moment.
Q&A session after Mr. Okabe and Ms. Sato's talks.
Q: There are mentions in your book and blog about feeling uncomfortable with viewing life and death as a binary choice. Could you elaborate on your thoughts? A: From a medical perspective, it's unnatural to choose death as life focuses on survival. However, humans have the capacity to choose their way of life, and it's important to contemplate what it means to live. Choices about how to live can lead to issues like war. The sanctity of life and freedom to choose how to live are crucial.
Q: In your book, you mention how meeting a senior patient made you contemplate whether to continue living. Have you had any significant encounters after being diagnosed with ALS? A: Before the diagnosis, I was optimistic about life, but that changed after becoming ill. Particularly, I felt a significant shift in human relationships. As ALS progressed, relationships with caregivers also became complicated, sometimes feeling like 'part of oneself,' yet painfully aware of the abnormality of the situation. Respecting others' lives is vital, and denying the life of someone with severe disabilities is akin to killing them.
Q: In a pre-interview, you mentioned that "there are words that need to be heard in the world, and feelings that cannot be expressed in the first person, yet people are forced to live with pain and fear every day." What do you mean by "feelings that cannot be expressed in the first person"? A: Many people carry unexpressable pain. I, too, hid this pain for a long time. However, meeting Mr. Okabe helped me begin to talk about it. A place to express and someone to accept this expression are necessary. Without understanding from others, it's difficult to communicate. The challenge of speaking in the first person and the importance of accepting others' pain are crucial.
Q: Mr. Okabe, you always wear lovely hats. How many do you own? A: Thank you for your question. I probably have about 15. I always wear a hat, which might seem impolite, but I have a condition called macular degeneration that makes it difficult to blink in bright light, affecting my communication. I was advised by my doctor to wear sunglasses, but I felt they looked bad, so I switched to hats.
Q: Friends often talk to me about feeling that "it would be easier to die" or expressing a desire to die. What responses are appropriate for someone harboring such thoughts? Currently, I can only listen attentively and sincerely, tell them that I want them to live, and offer to support them through their difficulties. A: The key is to reduce or remove the urge to die. Just being there can be enough. I've felt saved just by someone's presence. However, it's important to create an environment where one can express such thoughts, as it indicates a high level of trust. I hope people remember that. It's crucial to communicate that you're there in some way.
Q: Regardless of the presence or severity of a disability, how should society change so that everyone can live authentically? What kind of society do you hope for in the future? A: To create a society where everyone, regardless of disability, can live authentically, it's essential for each person to understand the challenges of living and consider what's best for others. Currently, many people view those with disabilities or the elderly as nuisances, and there's a lack of serious communal support. Changing this mindset requires understanding and appreciating our differences. A society where everyone can live securely is necessary. I hope for a society where everyone can thrive.
Words from Professors Kazuhiro Nozawa and Satoshi Fukushima: Professor Fukushima, who is deafblind, notes that there are challenges in policies and services from the perspective of those with disabilities. It's important for society to understand the daily difficulties faced by individuals with disabilities and for those affected to support and encourage each other. Interacting with peers who share common experiences provides the strength to live. The rights of people with disabilities should be equally protected regardless of their condition, and despite technological advances, the protection of these rights is currently insufficient. Society needs to stand in the shoes of people with disabilities and advance the development of systems and infrastructure. It's crucial to have a concrete vision for an inclusive society and work towards its realization.
Lecture "Breaking Down Barriers in Welfare" by Mr. Takuya Baba, Chairman of Aikawa Shunjukai, a social welfare corporation: He runs various care services, including small multifunctional home care and group homes for the elderly with dementia. Following incidents in dementia care, he has worked to break the isolation of such facilities and rebuild connections with the community. Through workshops and cooperation with local authorities, he has deepened dialogue with the community, repurposed closed facilities, and planned to operate them as community-open bases. Regular dialogue with local residents, participation in events, and transparency in facility activities are crucial. During the Q&A, it was highlighted that in elderly facilities restricted by infection control measures, continuing interactions among users while wearing masks was practiced to overcome the challenges posed by infectious diseases. Providing support that allows individuals to live authentically is important.
Discussion by current and former volunteer university students.
■Voices of Current Members Experiences and backgrounds of people with disabilities: Members have gained a real sense of the upbringing and experiences of people with disabilities... their environmental origins, the challenges and joys of living with a disability. While there are prejudices and discrimination, the presence of supportive families and a positive attitude towards overcoming difficulties are notable. Deepened understanding of disability issues through university: College entry sparked a strong interest in disability issues, deepening understanding. Each individual's uniqueness was appreciated, highlighting the importance of positively perceiving oneself and others. Issue-raising from the perspective of people with disabilities: From their viewpoint, societal challenges were addressed. Moving away from binary thinking between 'abled' and 'disabled' and appreciating each individual's worth were key insights gained.
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