Patient group insights

Every day, the patient groups that support people living with brain diseases see, hear and experience the discrimination that the world – often unwittingly – casts upon its members. Representatives from patient groups around the world expressed their viewpoints on discrimination. These are excerpts of some of their stories.

Ellen Lee (Singapore, President, Silver Ribbon)

How do you see discrimination in mental health vary globally across cultures?

Ellen Lee (Singapore, President, Silver Ribbon): “Discrimination in mental health varies across cultures globally in very different ways depending on which parts of the world the discrimination happens. I believe that in Europe, in the UK, people are more open to talk about mental health issues or to even acknowledge the fact that they are seeing a psychiatrist because they have an issue. But in Asia, which is more conservative, people shun talking about it because they feel that it speaks of weakness in character. It speaks of an inability to control one's faculties and perhaps even how to manage oneself when you have some mental issues.”


Paul Gionfriddo (USA, President and CEO, Mental Health America): “I think one of the problems with discrimination in mental health is that across cultures, people are still treating mental illnesses and mental health very differently. There are still some cultures where people are removing people from society and moving people into large institutions and keeping them. There are others where people re in the community and fully engaged in the community, and I think what we've got to be working toward is getting everybody to more of that second vision and less of that first.”

Ann Marie Mac Donald (Canada, Executive Director and CEO, Mood Disorder Association of Ontario)

What do you think are the main challenges related to mental health discrimination?

Ann Marie Mac Donald (Canada, Executive Director and CEO, Mood Disorder Association of Ontario): “It's fear. It is the fear of the unknown. And so when someone is physically ill, if they've broken their arm or they have cancer, society treats them differently than someone who has a mental illness. And the more that we can build awareness on the fact that we understand that there is fear, but through education, understanding that people who have a mental illness can live very, very productive lives.”

Julie Lau (Singapore, President, Parkinson’s Society Singapore): “For me, I think, the most important thing is ignorance. Because of ignorance, the patient, the person who is suffering, it's not acknowledged that he or she has the problem and therefore comes forward to ask for help. The other part of ignorance is there may be people out there who want to help, but they do not know how to help. So, we have got to find a bridge to pull these two together.”

Julie Lau (Singapore, President, Parkinson’s Society Singapore)

If you were to mention three action points to eliminate discrimination in mental health, what would they be?

Paul Gionfriddo (USA, President and CEO, Mental Health America): “I think the first one would be that we understand that these are public health issues; they are not public safety issues. The second would be to understand that these are diseases that affect children more than they affect adults. Half of mental illnesses emerge by the age of 14; three quarters by the age of 25. If we care about our children and we care about our future, we're going to have to deal with that as a reality. And I think the third thing we need to do is to recognize that recovery is possible. Too many people believe that once somebody becomes seriously mentally ill, they've got no prospect of recovery. But we all know that's false. And so, if we could fix that misconception, we'd do a lot toward ending discrimination.”

Ellen Lee (Singapore, President, Silver Ribbon): “I think first and foremost there has to be education. Not just formal education, but public education targeted at everybody in society to let them know that mental health actually is blind towards the victims. Nobody selects the victims. They come from different strata in society. Secondly, I think people who are afflicted with mental health issues should come out into the open and identify themselves. Particularly people who have fans . . . singers, stars, or whoever is rich and well-known. Because when these people come out into the open and share how they have suffered, what sort of treatments have they obtained that have helped them to regain their balance in life, they will certainly attract more attention than any other ordinary folks. Lastly, I think it’s important to walk the talk for people who are advocating mental health – to really be seen to be doing something about it.”

Paul Gionfriddo (USA, President and CEO, Mental Health America)

How do you see discrimination in mental health developing over the coming years?

Tony Stevenson (Australia, CEO, Mental Illness Fellowship of Australia): “We've seen, particularly in Australia, a much greater awareness of some mental health conditions like depression and anxiety – where people who are well-known to us, perhaps sporting people, celebrities, politicians, who have talked about their own depression and anxiety, and that's generated far more acceptance and understanding in the general community. But we still have enormous discrimination about serious mental illness like schizophrenia. So, I would hope that over the coming years we would see some of that change that we've already seen in terms of depression and anxiety also extend to mental illness such as schizophrenia.

”Paul Gionfriddo (USA, President and CEO, Mental Health America): “I think that when we look at discrimination with respect to people with mental illnesses that there's some hope on the horizon. I think young people are much more willing to talk about their mental health issues and are much more willing to seek help for them. And I think the more we engage, the better off we're going to be, and the less discrimination we'll see. But truthfully, we've got a long way to go. And I think it's going to take a while for governments around the world to catch up with where the population is.”

“The more we engage, the better off we're going to be, and the less discrimination we'll see.”

Tony Stevenson (Australia, CEO, Mental Illness Fellowship of Australia)

What are your hopes for better mental health in the future?

Paul Gionfriddo (USA, President and CEO, Mental Health America): “My hope for better mental health in the future is that we understand that these are conditions from which people can recover, and that we don't have to wait for crises to occur before we pay attention to them. We don't have to wait for families to fall apart, for societal structures to be diminished around people, for all the supports that we all expect to disappear before we do something about this. So, I think, looking forward, if we can keep our thinking moving upstream – like I say, before Stage 4 in our thinking – and really look at early identification and early intervention, then there's a lot of hope for where we're going to end up.”

Tony Stevenson (Australia, CEO, Mental Illness Fellowship of Australia): “Well, I would love to see a holistic approach to health and wellbeing. A combination of being able to be healthy physically, healthy mentally. At the moment those two areas of health are totally separated. And we know that people with serious mental illness are not getting the physical health treatment that they need. So I would like to see mental health being equally as important as physical health. And that everyone is able to find the treatment that's available, that health professionals equally look at our physical health and our mental health, and that we have that holistic approach to our health and wellbeing.”

“I believe that everyone has the right to live well, to be connected into their community.”

What motivates you to keep fighting to end mental health discrimination?

Tony Stevenson (Australia, CEO, Mental Illness Fellowship of Australia): “Well, I believe that everyone has the right to live well, to be connected into their community. From a very personal perspective, as many of us do, my family has deep experiences of mental ill health, and that motivates me. But I also believe in a just society. I believe everyone has the right to live their life to their greatest potential, so that motivates me as well. And I guess from a broader perspective, our community, our economy will only benefit if all people are healthy and well and get the support that they need. So, from a personal perspective as well as a broader community's perspective, it can only improve everyone's life if we are able to provide a great  mental health system.”

Ann Marie Mac Donald (Canada, Executive Director and CEO, Mood Disorder Association of Ontario): “It's hope. Any time you deal with an individual who is struggling or a family member that is struggling and they have an opportunity to start to heal and recover is what keeps me going.”

 

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