The National Association of the Deaf (NAD), the premier civil rights organization for deaf and hard of hearing individuals in the United States, and the American Association of the Deaf-Blind (AADB), the national consumer organization dedicated to the rights of the deaf-blind community, join forces to express their grave concerns that a national government has failed to provide meaningful support in life for its citizens, particularly those who are deaf and becoming blind as well as taking on other disabilities.
These concerns relate to Belgium, where deaf twins Marc and Eddy Verbessem had sought voluntary euthanasia, persisted in seeking it after their initial request was denied, and ultimately secured this tragic result.
The NAD and AADB take offense with how the media has reported this story. Facts have emerged that the twins sought death not because they both were deaf and becoming blind, but most likely because they experienced a number of other physical challenges and pain. Nevertheless, why these twins sought vigorously to die rather than to live as deaf-blind individuals with other physical problems cannot be fully known, but the press has purported that the twins believed it better to be dead than deaf-blind. The NAD and AADB dispute this characterization and strongly reject this public perception. We urge governments and society to consider three factors that impact the legitimacy of any acts of euthanasia:
1. There is a lack of awareness of the quality of life for deaf-blind people. Governmental and medical support of the Verbessems’ request for euthanasia reflects a view that life as a deaf-blind person with disabilities has lesser value. This is deeply troubling and requires an examination of biases within the medical profession and within government officials. Numerous studies show that people with disabilities report their own quality of life to be much higher than others perceive. For this reason alone, physicians should be wary of requests to assist any person’s dying based on assumptions about disability or its onset. A great deal of public discussion is happening on this story without addressing or touching upon these biases against disability. The NAD and AADB urges for discussion about how society’s views of disability influence the thought process of a person who acquires a disability.
2. People who are deaf-blind, including those with other disabilities, can have rich and fulfilling lives. Often it is not the disabilities themselves that interfere with the wellbeing and enjoyment of life, but the lack of support for people with disabilities, including lack of awareness about what is needed and available resources. Whether the Verbessems were aware of the many options for people with multiple disabilities is not clear, but it is critically important to increase awareness about the needs of people with disabilities. This information must be accessible in a variety of formats to ensure that all people, including deaf people who use sign language, understand that their lives have value and that they can get support.
3. People who are deaf-blind, including those with other disabilities, need to get support and to know their options. While it is unknown if the twins’ decision to be euthanized was free from overt coercion, subtle coercion exists when a society devalues people with disabilities by not actively removing barriers and discriminate against them in education, employment, and enjoyment of life. Governments and courts should resolve questions of support and access for deaf-blind people, or any other people with disabilities, before sanctioning any requests for euthanasia.
“All deaf-blind people are part of the great diversity of people in the world and society has a responsibility to ensure deaf-blind individuals are valued and provided with the same level of support as any other group or individuals,” said NAD President Chris Wagner. “With such appreciation, individuals who become deaf, blind, deaf-blind, or disabled would not seek death but life.”
“We are very saddened and concerned that the story of the deaf twins becoming blind has been blown out of proportion by the media,” said Jill Gaus, AADB President. “Many deaf-blind individuals live productive and fulfilling lives in the workplace, at home, in society, and in all parts of life. The advancement of new technologies has made it easier for deaf-blind individuals to have access to all information and to interact with family, friends, co-workers and others.”
Anyone who needs information about services for deaf-blind individuals can contact the AADB at www.aadb.org or by email to [email protected]. Individuals seeking information from the National Association of the Deaf can go to www.nad.org or send an email to [email protected].
Appreciation goes to Teresa Blankmeyer Burke, Ph.D, an expert on deaf bioethics who assisted in addressing the ethical issues wrought in this important international issue.