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 has described systemic failures in education and in family and community support that have 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 4500 people who use NZ 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 on their personal and family experience of mental illness. Researchers found that three quarters of the participants reported suffering some form of abuse in childhood, seven sexually, along with physical and emotional abuse and neglect. There were other traumatic events experienced (e.g., early death of parent or sibling) by those not abused or neglected. These events occurred with families, in foster care, at school and in the community (e.g., abuse by taxi drivers). In all but two cases the people who were abused or otherwise traumatised were not able to disclose what had happened until late adolescence and in one case not until well into her 40s.
The mental health system responded poorly to the needs of this group, labelling them as depressed, anxious, psychotic, hyperactive or having borderline personality disorder. Typically, participants were given little information about what these terms meant or what might be the likely causes. The traumas that were the source of the participants’ mental illnesses were largely ignored, with medication being the standard treatment and hospitalisation or imprisonment among the outcomes. Most of the participants suffered from long-term post-traumatic stress disorder and needed intensive counselling or psychotherapy to help their recovery.
Participants needed to be able to tell their story in NZSL to the therapists, but there were none who could understand the participants in their own language. The participants felt unsafe having to have an interpreter in the room while they described events for which, through no fault of their own, they often felt great shame. Very few interpreters are trained in mental health interpreting, which is a special skill requiring a long-term commitment to the therapist and the Deaf person they work with. Mental health staff who could manage limited communication had little understanding of Deaf culture and would make stigmatising remarks, such as “Don't get pregnant, because you're likely to have a deaf child with mental health problems”, etc. Māori and Pasifika participants for many years were not assisted to get access to culturally aligned counselling.
The consequences of the inadequacy of mental health services for this group are that some participants, after many years of engagement, were left in limbo without a plan and waiting, without an advocate, for the next crisis to happen. Of the eight people who had experienced major trauma, four have received no counselling support whatsoever, with two of these suffering serious effects of ongoing trauma. The four participants who have had support over several years from ACC counsellor-interpreter partnerships, appear to have received major benefits in resolving issues of trauma and identity. However, for this group whose recovery journey has been substantial, the ongoing possibility of not being able to retain their counsellor or interpreter remains a real threat to their mental wellness.
For the new generation of Deaf coming through the education system, things look better. NZSL, after years of suppression, is now an official language and some Deaf children supported by resource teachers have hearing classmates who have skills in sign language. Unfortunately, getting access to a resource teacher fluent in sign language is very difficult. One participant, a Deaf child, returned to his class after the holiday break to find his signing resource teacher (a key person for his connection with rest of the class) was no longer there. This was, in itself, a traumatic event leading to anxiety, depression and a crisis of identity.
These stories tell us that while there are some amazing journeys of recovery, most come after spending many years of uncertainty and unwellness. That uncertainty remains as there are no plans to extend the only, tiny and fragile Deaf mental health service in NZ that serves a very small number of people in Auckland. There are no national plans 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 backs up the call by Coalition of Deaf Mental Health Professionals and other groups for
- Nationally coordinated Deaf Mental Health services covering acute services, community support, counselling, and residential, vocational services and interpreting services
- Deaf mental health services largely staffed by NZSL fluent mental health professionals
- Services for Deaf children and their carers that will prevent and address the trauma of abuse and damage to identity formation that many Deaf have experienced growing up in New Zealand
- Training programmes for Deaf to become mental health professionals and for mental health professionals to become sign fluent.
The URL for the report Mental health experiences of Deaf in New Zealand
The URL for a NZSL and English video-presentation of the report
This research was funded by the New Zealand Sign Language Board, the Oakley Mental Health Foundation, J R McKenzie Foundation and Unitec.