Systemic failures lead to high rates of mental illness in the deaf community
A research project sponsored by the Coalition of Deaf Mental Health Professionals described systemic failures in education and in family and community support that led to the very high rates of mental illness experienced by the deaf community. Previous local and international epidemiological studies have clearly shown that deaf populations (including the 4,500 people who use New Zealand Sign Language (NZSL) as their preferred means of communication) are 2-3 times more likely than the general population to need support for mental illness and addiction issues.
Twelve deaf people gave in-depth interviews about their personal and family experiences with mental illness. The researchers found that three-quarters of the participants reported experiencing some form of abuse as a child, seven sexually, as well as physical and emotional abuse and neglect. Other traumatic events were experienced (eg, premature death of a parent or sibling) by those who had not been abused or neglected. These events happened with families, host families, at school and in the community (eg abuse by taxi drivers). In all but two of the cases, people who were abused or traumatized were unable to reveal what happened until late adolescence and in one case not before quarantine.
The mental health system has responded poorly to the needs of this group, labeling them as depressed, anxious, psychotic, hyperactive, or with borderline personality disorder. Typically, participants received little information about the meaning of these terms or likely causes. The traumas that were at the root of participants’ mental illnesses were largely ignored, with medication being the standard treatment and hospitalization or imprisonment among the results. Most of the participants suffered from long-term post-traumatic stress disorder and needed intensive counseling or psychotherapy to help them recover.
Participants had to be able to tell their story in NZSL to therapists, but none could understand the participants in their own language. Participants did not feel safe having an interpreter in the room as they described events for which, through no fault of their own, they often felt great shame. Very few interpreters are trained in mental health interpretation, which is a special skill requiring a long-term commitment to the therapist and the deaf person with whom they work. Mental health staff who could handle limited communication had little understanding of Deaf culture and would make stigmatizing remarks, such as “Don’t get pregnant because you may have a deaf child with mental health issues” , etc. Maori and Pasifika participants for many years were not helped to access culturally appropriate counseling.
The consequences of inadequate mental health services for this group are that some participants, after many years of engagement, have been left in limbo without a plan and waiting, without an advocate, for the next crisis to occur. Of the eight people who suffered major trauma, four received no psychological support, and two of them are suffering from the severe effects of ongoing trauma. The four participants who were supported for several years by ACC counselor-interpreter partnerships appear to have received major benefits in addressing trauma and identity issues. However, for this group with a substantial recovery journey, the lingering possibility of not being able to retain their counselor or interpreter remains a real threat to their mental well-being.
For the new generation of Deaf people entering the education system, things are improving. The NZSL, after years of suppression, is now an official language, and some deaf children supported by resource teachers have hearing peers who have sign language skills. Unfortunately, having access to a resource teacher fluent in sign language is very difficult. One participant, a deaf child, returned to his class after the holidays to find that his sign resource teacher (a key person for his connection to the rest of the class) was no longer there. This in itself was a traumatic event leading to anxiety, depression and an identity crisis.
These stories tell us that while there are incredible paths to recovery, most come after many years of uncertainty and unease. This uncertainty remains as there are no plans to expand the one, small and fragile Deaf mental health service in New Zealand that serves a very small number of people in Auckland. There is no national plan for a Deaf mental health service, no clear funding approach, no identification of Deaf culture in the health system, and therefore no accountability. The research supports the call by the Coalition of Deaf Mental Health Professionals and other groups to
- Nationally coordinated deaf mental health services covering active services, community support, counseling, residential services, professional services and interpretation services
- Mental health services for the deaf largely staffed by mental health professionals who are fluent in NZSL
- Services for deaf children and their caregivers that will prevent and treat the trauma of abuse and damage to identity formation that many Deaf people have experienced growing up in New Zealand
- Training programs for the Deaf to become mental health professionals and for mental health professionals to master the signs.
The URL of the report New Zealand Deaf Mental Health Experiences
The URL of a Video presentation in NZSL and English of the report
This research was funded by the New Zealand Sign Language Board, Oakley Mental Health Foundation, JR McKenzie Foundation and Unitec.
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