It’s time to start listening: Understanding Intellectual Disability and Mental Health by: Emily Fernandez
Social Worker Donna Bryan and self-advocate Michael Cherry working together at Community Living Association (CLA).
Photo: Emily Fernandez
Concerns are rising that people with an intellectual disability experiencing mental health issues are being overlooked by medical practitioners, police officers and society in general as their needs for support and understanding are misinterpreted.
Some people who have an intellectual disability are also experiencing mental health issues or disorders, meaning they have a dual disability.
It is a complex process to diagnose dual disabilities. People with an intellectual disability may have problems expressing their thoughts because of communication difficulties. Often, those with more severe or profound intellectual disabilities are diagnosed with challenging behaviour rather than considering their mental health.
This is what happened to Michael Cherry, a self-advocate for dual disabilities who has a dual disability himself, of autism and mental health illness.
When Mr Cherry began feeling he had serious mental health problems, he was unsure on what to do and who he could turn to.
“Things started getting bad a few years ago with depression and voices and stuff,” Mr Cherry said.
“It was stuff like that, basically it made it hard, I couldn’t concentrate, the voices were telling me to do things I didn’t want to do. I didn’t know who to turn at the time, basically, I was scared, and I was frightened, I was angry ‘cause I didn’t know what to do with these voices.”
Before things grew worse, Mr Cherry turned to his social worker, asked for her help and they immediately went to the doctor. However, it took hours and hours of appointments and several doctors before he received the help he needed. Several of those doctors believed he had no mental health issues at all despite his and his social workers’ explanations.
Approximately three per cent of Australians have been diagnosed with an intellectual disability, which is more than 600, 000 people, according to a report in 2012 by the Australian Bureau of Statistics.
While mental health issues are the third leading cause of disability, each year one in five Australians have or will experience a mental health illness.
Research studies from National and New South Wales Council for Intellectual Disability found in 2011, that one in three people with an intellectual disability may develop mental illness. This is two to three times more frequently than the Australian population.
Community Living Association (CLA) social worker Donna Bryan, said she has seen this happen many times, and it’s time for a change.
“Honestly, this is a massively common issue within the disability community,” Ms Bryan said.
“Time and time again I have seen people with disabilities, trying to explain how they’re feeling, what’s going through their mind and reaching out for help but some healthcare professionals either don’t understand or misinterpret what they’re trying to describe.”
Many others have spoken about being shown the same treatment, as those with dual disabilities are continuing to be overlooked and are advocating for better support and understanding.
Michelle Mullane and her partner Robert* both have an intellectual disability, however Robert is also experiencing a mental illness and depression and is struggling to find a doctor to help. Yet Ms Mullane believes the solution is simple.
“Look and listen and ask questions, ‘Are you okay?’, ‘Have you got support?’, ‘Do we need to get someone else for you?’. You know? That’s what happens, they just overlook,” Ms Mullane said.
Specialised workshops are now being made available to try improve understanding of this complex issue.
The practical workshops aim to teach social workers, medical practitioners, health care workers and others who are interested in learning more about dual disability. They are taught by staff workers but the main focus is the guest speakers who are living with dual disability.
CLA and WWILD conduct the workshops. WWILD is a sexual violence prevention group that supports people with an intellectual disability.
Workshop facilitator and WWILD project worker, Victoria Tucker, said the workshops are important for hearing real experiences from people who are living with dual disability.
“The main goal of the workshops is to teach everyone how to support and understand people living with a dual disability and different ways to communicate better and who better to teach us than people who are living this experience,” Ms Tucker said.
Carol*, has a intellectual disability and mental illness, and speaks at some of the workshops.
She explains how she wants people to begin showing more kindness and patience towards those with disabilities.
“Remember, you need to treat people with respect, be calm with people if they are having a bad day, be careful and honestly, tell me… tell the truth,” Carol said.
“When you make mistakes fix them, be nice, kind to people and try to be understanding. Respect our privacy, we will tell you what we want you to know.”
Tedd Jones, is part of Speak Up for Yourself (SUFY) and has an intellectual disability and has seen many of his friends with an intellectual disability experiencing mental health illnesses get hurt. Some have even lost their lives in their struggle to find help.
“I lost my friend because he had an intellectual disability and depression, he wasn’t trying to hurt anyone but himself but no one would help him,” Mr Jones said.
“No one took the time to listen to him, it’s not just doctors, it’s police officers too and everyone.
“You just have to take the time to listen to us and actually hear what we have to say, not use violence to make us listen or ignore us.”
Manager at WWILD Leona Berrie, has worked with other staff members in expanding their workshops, by giving understanding and support about several disabilities.
“We’ve been doing these workshops for at least a couple years now, it’s part of a joint endeavour between WWILD and CLA, there are quite a range of different things to help other disabilities and care workers with what they need to know,” Ms Berrie said.
With these workshops underway and growing over the years, WWILD has been encouraging more advocates with dual disabilities to speak out. These speakers are gaining the courage to tell their stories and teach people how to better understand them, to be honest, fair and patient, and learn how to support to them.
*Did not want their last names published.