A man with amyotrophic lateral sclerosis, or ALS — the same disease famed physicist Stephen Hawking has — demanded Tuesday that the Diet rethink how it treats people with disabilities after he was prevented from appearing as a witness during a committee session last week due to communication difficulties.
The Lower House Health, Labor and Welfare Committee did not allow Hiroki Okabe, 58, to appear as a witness May 10 to discuss a bill on supporting people with disabilities.
The Democratic Party initially proposed the idea of inviting him to the session, but the ruling Liberal Democratic Party was reluctant to do so, saying “it would take time to communicate.”
The incident took place after a law to prevent discrimination against people with disabilities took effect in April.
During a meeting Tuesday with Okabe, Lower House Speaker Tadamori Oshima promised him that the Diet will improve the way it deals with people with disabilities.
“I seriously take to heart (what has happened). I will make efforts to deal with such situations,” Oshima told Okabe.
Okabe later also met with Upper House President Masaaki Yamasaki.
On Monday, Hiromichi Watanabe, the LDP chairman of the Lower House panel, offered an apology to Okabe.
Okabe is now scheduled to appear next week when the bill is discussed by the Upper House Health, Labor and Welfare Committee , lawmakers said.
“I wanted them to see how I communicate with their own eyes, and listen to what I had to say,” Okabe, who is vice chairman of Japan Amyotrophic Lateral Sclerosis Association, said during an interview with Kyodo News. “Whatever the reason, I’m disappointed that I wasn’t able to appear.”
Okabe said he was already preparing to speak at the Lower House session by writing a speech and securing the help of an interpreter.
ALS is a progressive neurodegenerative disease that causes gradual paralysis leading to death. Okabe, who breathes with an artificial respirator and cannot speak, communicates via a helper who interprets the movements of his mouth and eyes.
During the interview, there were times when a reporter needed to wait a while for Okabe’s answer. But overall, communication via the helper was smooth.
To become such a helper, at least a year of training is needed. Ironically, the bill discussed at the panel session Okabe was supposed to attend is also aimed at making it easier for people with disabilities to obtain support from helpers.
The bill passed the Lower House last Thursday and was immediately sent to the upper chamber for deliberation.
The LDP claims its actions were done out of consideration for Okabe’s physical condition, explaining that party members had intended to visit his home rather than make him travel to the Diet.
Okabe, however, brushed off this explanation, saying there was no need for such concern as he has no trouble going outside. He said he goes out around 20 days a month to participate in activities such as lecturing at a university or providing support for other ALS patients.
“I want (the Diet) to be prepared and have the awareness to listen to many voices, even if they have disabilities,” he said.
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