Mental Health

Hello everyone, my name is Joe and I have Ushers syndrome Type 1. Before this video series starts, I want to give you a content warning, these videos are about mental health. These videos could invoke feelings of stress, cause you to become upset, feel uncomfortable or panicked. 

Please take care when watching this video series. When you’re watching the videos, if you feel they’re starting to affect you, please ask a family member, a friend, perhaps a GP or a psychologist for support. It’s important to look after yourself. If you feel like you need serious help, please contact 000.

If you need support, there are a few organisations you can contact. Like Lifeline and Beyond Blue. Throughout this video, I’ll be talking about mental health issues and how they affect us. I will be covering a number of different topics. 

We can develop illness in our mind just like we do in our bodies. Your physical and mental health can also be linked. Good mental health means being able to feel positive even when you are facing obstacles. When negative life experiences occur, it’s very normal for you to feel isolated, sad, or depressed. If these feelings keep occuring, or if those feelings of sadness, isolation or depression last for a long time, please seek support from your GP. 

There are lots of different mental health issues that can affect how we think and how we feel. Mental health issues can happen due to a range of factors, including genetics, stressful experiences and more. 

Stress can happen at any time and can cause you to feel fear or panic. People with disabilities are more likely to have mental health issues compared to the wider community. There is some common experiences for deafblind people that impact mental health; an inability to communicate with family members, bullying or harassment at school, feeling disconnected from the world and the people around you, feeling unwelcome in the wider deaf community. 

Deafblind people can have real difficulty getting the support they need.  It’s incredibly difficult for deafblind people to find appropriate support or psychological counselling. It’s difficult for deafblind people to find supports that match their needs. 

Part of the difficulty comes from a shortage of interpreters and CommGuides. Psychologists, counsellors and doctors often lack knowledge of the deafblind community. Mental health issues come in a number of different forms. Some people only experience short term effects for mental health issues. 

While others can have lifelong impacts.  Sometimes these feelings may come and go. But for others, these feelings can be incredibly strong, and they need urgent support. It’s possible for any person to develop a mental health issue at some point in their lives. 

Not just in the deafblind community. It can be anyone; Doctors themselves, students, young people, old people, even children. Anyone could develop a mental health issue at anytime during their lives.

Causes of Mental Health Issues

• Mental health issues have no single cause. They can come from a combination of genetics, brain, environment, culture, and life experience. 
• Being deafblind does not cause mental health issues. The cause is being deafblind with no access and bad attitudes/lack of deafblind awareness in the community. 

Bullying/Discrimination: 

• Many deafblind people know what it’s like to be picked on or left out because they are deafblind. 
• This can happen at any time in life in many different places such as at school, at work or in the community. 
• These experiences can impact someone’s mental health especially if they have been happening for a long time. 

Financial Stress: 

• Paying for supports and technology can get expensive and many deafblind people are stressed about money. 
• Deafblind people also have more barriers to finding a job which can make them worry about money. 

Barriers to participating in activities or groups: 

• Most shops, events and services are not set up the right way for deafblind access. Most of the staff at those places are also not very deafblind aware. 
• This means most deafblind people have limited choices about where they can go and what they can do. This can impact mental health over time. 

Social Isolation: 

• Deafblind people often find it hard to make or stay in touch with friends. 
• Many deafblind people also don’t feel welcome in the deaf community. 
• Feeling lonely and cut off from the world can have an impact on your mental health. 

Health problems or ongoing medical procedures: 

• Being deafblind often means lots of trips to the doctor. This could be for checks/tests related to deafblindness or other disabilities. 
• The stress of this and communication barriers can lead to mental health issues. 

Adjusting to acquired disability and loss of independence: 

• If someone becomes deafblind later in life it is a huge change which can bring feelings of grief and loss. 
• Even if someone has been deafblind for a long time, their hearing and vision may change over time. 
• For both it often means not being able to do things anymore or needing to learn new ways to do things. These changes can be very upsetting because the person now needs more support and feels less independent. 
• Many deafblind people also have to explain their needs to the NDIA every time something changes. The staff there don’t have good deafblind awareness and the experience is very stressful. 

Difficulty in sourcing supports: 

• There are not enough interpreters or CommGuides and deafblind people often miss out on things because there is no support available. 
• Deafblind people also experience stress when supports don’t have the right skills. For example, many interpreters do not know how to work with deafblind people. 
• Since the NDIS started many deafblind people feel exploited because workers see them as a way to make money. 

Difficulties accessing mental health supports: 

• Not many counsellors or psychologists have experience with deafblind people. 
• Not many interpreters have the right skills to work in mental health. 
• This creates a barrier that can make mental health issues worse. 
• If a person had a bad experience with a counsellor or psychologist in the past they may be less confident to ask for help in the future. 

Mental Health: Anxiety

• Anxiety is more intense than just feeling worried. 
• Anxiety is a natural response to feeling unsafe and can help protect us from danger. 
• If feelings are strong, come out of nowhere or don’t seem to go away it can become a mental health issue. 
• Everyone experiences anxiety differently and we can’t control how it will affect us. Some people feel more sad or more worried and some may feel both. 

Why do people develop anxiety? 

• There is no single cause. Anxiety can be from a combination of genetics; brain; environment; culture; and life experience. 
• Part of what makes us anxious is a process in the body called “Fight or Flight”. If we don’t feel safe our body speeds up our heart rate and breathing and makes our muscles tense. This gets us ready to fight or run away from danger. 
• These feelings can be overwhelming and confusing when they happen and there is no danger, just in everyday life. If people have these anxious feelings even when in a safe environment it can become a mental health issue. 

What does anxiety feel like? 

• Worrying or difficulty controlling worry: Strong worry even over small things. It can be very hard to stop worrying or to calm down. Anxiety can cause worry about health, loved ones or something happening in the world and can only focus on the most negative perspective. 
• Fear of change: Because it is linked to safety, anxiety can make us scared of new people, new places and new situations. It is normal to feel a little nervous about new things, but if this feeling is so strong it becomes overwhelming it can create problems. 
• Avoidance: People may avoid places, people or activities that make them anxious. This means people can miss out on things they might really enjoy and become more isolated. 
• Physical symptoms: Anxiety isn’t just in our thoughts. Anxiety can give us feelings in our body like a fast heart beat; hard to breathe; tight throat; sweaty hands; sick feeling in stomach; tense muscles; shaky on feet/weak feeling; headaches; hard to sleep; increase or decrease of appetite. 
• Some or all the above happening very strongly is called a Panic Attack. These can pass quickly or last a long time and are common for people with anxiety. 

Mental Health: Depression 

• Depression is more than just feeling sad. It is a medical illness. 
• People with depression find it hard to see life in a positive way and feel cut off from the world. 
• When people feel depressed even simple things like getting out of bed in the morning can feel too hard. 

Why do people get depressed? 

• There is no single cause for depression. It can be from a combination of genetics; brain; environment; culture; life experiences and stress. 
• Depression can also happen because of stressful life events like losing someone close to you or seeing/experiencing something awful that you can’t forget. 

What does depression feel like? 

• Depression is feeling sad most of the time, without reason, for at least two weeks. When we feel sad there is usually a reason and, with time, we start to feel better. When someone is depressed they can’t cheer up no matter what they do. This feeling can last a long time and can become a barrier to enjoying life. 
• Feel extremely sad, anxious, stressed or tearful: Depression makes us feel a very strong sadness that might not match what is happening in our lives. Someone may feel very nervous or worried, can’t calm themselves down, numb and can’t or don’t want to talk about how they’re feeling. 
• Hard to focus or make decisions: Depression can make us so sad that simple things can feel too hard. Things like having a shower or deciding what to have for dinner can seem so hard that people don’t even want to try. 
• Lose interest/motivation and become withdrawn: Things that make us happy, like family, friends or fun activities don’t feel the same when we’re depressed. You can do something fun and still feel sad. Some people feel they have very low energy and just want to be alone. 
• Move and talk/sign slowly: People feel very sad but also very tired. Sometimes this means they will communicate more slowly. 
• Not enough/too much sleep: Some people can’t get to sleep or stay asleep through the night. Others may sleep many hours but still feel tired/low energy when they wake up. 
• Gaining/losing weight: Some people don’t feel like eating, skip meals and lose weight over time. Others eat too much and start to gain weight over time. 
• Lose sexual interest: Sexual or intimate activities that used to make us feel good don’t interest us. This includes things like not wanting to be touched or not wanting to be close to your partner. 
• Thinking about ending your life: Strong sadness mixed with feeling there is no hope leads some people to think about ending their lives. People feel like they are broken inside and will only ever feel sad and alone. 
• Worry about aches and pains: Can get worried that small aches and pains in the body are signs of more serious medical issues. No proof anything is wrong, but may worry a lot and find it difficult to stop.

Acquired disability

When something new happens to you, something you have not had before. For example, acquiring deafblindness means you were not deafblind at birth but became deafblind later. Your disability is acquired because you never had it from the beginning.

Complex

Something that is hard, difficult. Something not easy to understand. For example, deafblindness is complex because most people cannot understand how deafblind people live.

Barrier

Something which stops you from doing something in life. Example, deafblind people have a lot of barriers in their life because the world is not made for deafblind people.

Culture

Lifestyle or traditions, something that a group of people have in common. Deafblind culture means the things that all deafblind people do the same, share the same ideas and beliefs about things.

Counsellor/psychologist

This is a professional person who has special training in helping people with things. They are people you can talk to when you feel life is very hard and you want some support with your mental health. These people are not your family or friends, they are people you will not have known before. You must pay them for their service.

Numb

When you can’t feel anything. It can mean both emotional and physical feelings. When you are numb, it means something bad has happened to make you feel that way.

Motivation

When you feel like you have energy to do things. When your mood is very positive and you feel like getting things done, like being social and doing housework. When you are not motivated, it is the opposite feeling – you don’t want to get out of bed in the morning because your mood is very low. You don’t want to do things because you don’t have the energy.

Grief

When you feel really, really, really sad. When you have lost something, or someone which is important to you. If someone dies who you love, you will feel grief. If you lose your vision and hearing over time, you will feel grief. Grief is much more than just normal sadness, it is a lot deeper.

Isolated

This means feeling alone. You can feel isolated even if you are around lots of people. Isolation comes from being deafblind because you feel that people don’t understand your world. Isolation can happen when you can’t access things that other people can access because they are not deafblind. If you don’t have a CommGuide or enough NDIS funding, you feel isolated because you can’t do things that make you happy. Isolation is loneliness but it’s a lot worse for people who are deafblind.

Discrimination

When people are treated differently/wrongly because of their disability. Discrimination can happen in different ways and not only deafblind people experience it. People with all types of disabilities, people who are aboriginal or who are gay can also experience discrimination. It means when you are not treated fairly or equally as other people without a disability. It means that people’s attitudes towards you are not positive and people can do hurtful things.

Negative perspective

When you can’t see things in a positive way. It can also mean that other people’s opinion of you is not positive. If somebody thinks that you are not a good person because you are deafblind, then their perspective of you is negative instead of positive.

Losing someone close to you

When someone who you love and care about dies or passes away. But it can also mean that a relationship you have had is no longer able to continue so you have lost your partner or your child or your friend, but not to death.

Inclusion

When people involve you in things. Ask you to be part of things. Including deafblind people in important things is something that doesn’t always happen. The opposite of inclusion is exclusion. Inclusion also means making sure things are accessible to deafblind people. Inclusion can mean having ramps instead of stairs and having good lighting in dark places. It can also mean providing interpreters for deafblind people, captioners and audio descriptions.

Financial barriers

When you can’t do things because you don’t have enough money. Financial means money, so if you can’t afford something that is a barrier. That can mean NDIS financial barriers or personal financial barriers. Both types of barriers mean that money is a problem to doing what you need/want to do.

Genetics

Things that you get from your mum and dad. For example, if you have blue eyes or red hair, one of your parents also has those. You have been given what they have through a process called genetics. If your mum or dad has depression or anxiety, it means that you could also have these conditions because it is genetic. It means what comes through generations of your family history. Sometimes, if your mum or dad are deafblind, that is why you are deafblind too. Because you have inherited it from them.

Ending your life

When you feel like you would like to die. This is also known as suicide. When people kill themselves. Wanting to end your life can happen when you feel like life is not worth living because there is not enough positivity in it. When people are depressed or have anxiety which is very bad, ending their life is sometimes what they prefer to do because that is easier than trying to live. It feels like it is their only choice.

Exploited

To take advantage of, or use someone, for your own benefit. For example, support workers, interpreters and CommGuides can sometimes exploit deafblind people because they have NDIS funding so these people can easily get lots of work from the deafblind person and become rich. Sometimes these people don’t do their jobs very well and only want the deafblind person’s money so that means they are exploiting the deafblind person.

Loss of independence

When you can’t do things by yourself anymore and need lots of help to do things that you could do without help before. For example, when deafblind people lose more sight or hearing, they become more dependent on other people to get through their daily life. It can mean that you need help with cooking, shopping or exercising.

Mental Health Numbers

• Mental health issues can impact anyone. 
• In Australia, 45% of all people will experience a mental health issue at some time. 
• Each year, around 25% of people in Australia have a mental health issue. 
• Today, around 4 million people in Australia have complex mental health issues. 
• People with disabilities, including deafblind people, are more likely to experience anxiety and depression than the rest of the community. 
• Mental health issues for people with disability are worse since COVID-19 because of isolation and lack of supports. 

Hello. My name’s Jennifer Weir. I worked as a Registered Nurse in Critical Care, and ceased working in 2015. I have three siblings who are also in various stages of living and working with Usher Syndrome. I was diagnosed going blind in 1973 and going deaf in 1984. At the time of diagnosis in 1973, I was just told to get on with my life and buy a good pair of sunglasses, which I did. No real explanation of what was wrong was given to me or any organisation that could have assisted me in adapting to my diagnosis. It was around 2009 that I privately saw an ophthalmologist for assessment of capacity to work as I had previously been diagnosed many, many years ago, as going blind. The actual type of Usher syndrome has not been determined, but I have been told it is most likely Usher II. I am fortunate that I am oral and able to hear with the assistance of a hearing aid and a cochlear implant. I would be lost without them. My vision is not adequate enough to manage Auslan. I also use a Roger pen in meetings and events which also assists me in understanding and hearing what is happening. 

My major health issues is anxiety. I believe that my anxiety is not only as a result of a progressive deafblindness, but also the consequences of the environment or environment in which I worked. The stress of dealing with critically ill patients and grieving family just takes a toll on your mental health over time and I feel, I have a form of post-traumatic stress disorder. I have never had this confirmed by a professional. The anxiety really started in my fifties. My GP commenced me on Sertraline, which I took the six months. 

I needed to make a change in my life in order to improve my mental health. This was achieved by exercise, for example, just a good walk after work which assisted me in having a reasonable sleep during the day. I also try to socialise and associate with people who have a positive outlook on life. Since accessing the NDIS, I have been able to take up golf, which is great. I am challenged by developing a new skill and spending time outside in the fresh air. 

The main reason I haven’t accessed mental health treatment, it is down to can I trust the individual that I would be speaking with? Trust can easily be betrayed. Personally, I feel that promotion of a deafblind culture limits the public’s expectation of what they can achieve, as people unjustly assume that you are 100% deaf and blind and can’t do anything which limits opportunities for the deafblind individual. I do not understand the deafblind culture as I have lived a relatively normal life with the progression of my deafblindness, I have adjusted my life according to what is required within the conditions’ progress. 

I would like more deafblind individuals to try and learn how to do things to achieve their goals and independence. By doing this, their mental health will improve as they will gain confidence and feel more in control of their lives and not having to rely on others to do things.

I’m Therese. I live in a regional city in Queensland. In my late 40’s, I was unexpectedly diagnosed with Usher syndrome Type 2a. Previous to that, I hadn’t had any symptoms of Ushers, so it was a huge shock to our family. We’d never even heard of Usher syndrome and we weren’t part of any community that knew anything about vision loss or about hearing impairment. We felt very, very alone, very isolated and quite powerless. I use oral communication because that’s my first form of communication. I did do the beginner’s Auslan class, but as I had no previous experience with Auslan before I became legally blind, I was unable to see well enough to follow all the hand movements. I’d like to learn tactile signing.

For now, I’m studying Braille. Braille has been a challenge, but it’s been amazing and worth it. And I’ve enjoyed learning a new language. I have anxiety and the constant sense of loss and grief I feel at having acquired suddenly and later in life. This unexpected, unplanned for diagnosis sometimes puts me into a bit of depression. 

Some of my almost daily practices are positive self-talk, positive imaging, building courage in resilience and developing joy. With the positive self-talk, I try to stay militantly vigilant about keeping my self-talk positive. I would take a moment and tell myself, “good job Therese.” “Don’t worry about the mistakes.” “Just have another go, Therese.” “You’re doing good, Therese.” Positive imagery. I picture myself doing an activity that I used to be good and strong at. For me that’s horse riding. I love horses, I loved riding. So I picture myself carrying on, feeling the rhythm, the strength, the speed of the horse. The horse is doing the seeing. The horse is doing the hearing and the moving. It’s a relief for me not to have to be so on guard in my movements. It’s liberating, it’s peaceful. It helps me to calm down.

I made a decision to build my courage. One of the ways I do that is by immersing myself in true stories of other people’s courage, their strength of spirit in overcoming adversity. I intentionally focus my thoughts on people of courage, with the hope that I will also become a person of courage. I’m intentionally trying to build joy into my life. Oh yes, there are always barriers when you have lost two senses: Coordinating schedules, organising transport to and from appointments. In my city, I haven’t found counsellors, psychologists, life coaches, etc. who are trained to help people transition from their old life to a new life after acquiring a disability later in life. 

I wasn’t born with hearing and vision impairment, so this is all very new. It has been incredibly difficult making new communities, finding new friends – trying to, overcoming loneliness, finding new ways to stay fit and healthy. It would be nice to have more trained support to help us in problem solving throughout that difficult transition. In my city, there are no Comm-guides. I just have to figure something out myself, always making up things.

My psychologist is a good and trustworthy person, but they actually have no idea about my experience. That makes some sessions seem pointless to me because of their lack of experiential understanding about vision and hearing impairment. It would probably be really beneficial for mental health and allied health teams to go through a process similar to the training of an O & M, when they’re blindfolded for a period of time to experience a simulation of vision loss. Maybe they could wear earplugs as well. We may have lost our hearing and our seeing, but we do still have our intelligence. You don’t need to dumb down what you’re saying to us, Communication may take longer with us, but we just want to be seen and heard like everyone else.

Every time we cook in the kitchen or set a foot outside the safety of our homes, we take our lives in our hands. Every time we cross the road we have to face roaring monsters that other people call cars. We really live on the edge and we are very, very brave people. And sometimes … sometimes, we just can’t be that brave every single day. With all the technology we have now, we live in the best time in history. So I would say to you, take courage in that knowledge. You can slay the mental health dragon, but you have to choose to want to.

My name is David Squirrel and I have Adult Onset Ushers and I live in Adelaide, South Australia. I communicate by oral communication, vision field slow Auslan and print-to-speech. 

I have adapted well to the grief response of loss and have good resilience to change. But the issues I have stem from frustration due to bureaucratic processes and practices and the inability to communicate with businesses as they don’t have pathways to enable me. I do have intermittent anxiety, frustration and situational depression. 

I’ve seen counsellors in the past who were not helpful as they fail to understand deafblindness and I can understand the tactics they are using, due to my past medical career. 

As a Christian, I find prayer and sharing with other Christians valuable in dealing with mental health related issues. Also, walking, email with friends, genealogy and Bible study all tend to lift my spirit and help.

Yes. Sighted guide, communication guides and visual field Auslan are barriers due to thin markets aspects as there are not sufficient people trained to act as carers. Some people have higher voice tones or accents which fall outside my hearing aid assistive range as I’m now down to minus 100 decibels. Very few people understand Deafblind, the isolation, the issues of access to information and the communication needs. All of these act as barriers. The varied presentations of Deafblind be it congenital early onset, or like me, adult onset. The varied communication needs and assistive technology. The time frame these may pose to any interaction, that you may have to work through another person to assist in communication, and that you need supportive environments and not to treat you as being useless or cognitively impaired. While there are common mental health issues such as anxiety and depression and the more serious ones, such as substance abuse, schizophrenia or manic depressive illnesses, professionals often do not have the knowledge or the skills to communicate with you, or they treat you as cognitively impaired as well. 

There’s a risk of premature dementia or cognitive decline, which is more common in Deafblind persons due to their lack of cognitive stimulation. It’s better to present early than late and be proactive despite often feeling reluctant to admit or acknowledge a mental health challenge. 

Family doctors may not have the time or experience, and it’s very problematic to find a suitable interpreter or one that you might trust in discussing sensitive and personal information. Many professionals have never worked with a Deafblind person and don’t understand the variability in presentation and assistive technology or human assistance that might be needed. Medicare and NDIA have a poor understanding of presentations and needs. Some conditions are permanent and some intermittent. NDIA often fails to understand that mental health is related to Deafblind and is not always seen as the same condition. It’s seen as different when it comes to plan writing and fund allocation. And NDIA and other government bodies fail to understand the added stressors of their bureaucracy that can have on mental health, and especially those with sensory impairments such as deafblindness.

My name is Darren and I’m from Perth. I have Ushers Type II which is RP and hearing loss, which I have. I wear hearing aids and I have tunnel vision. So, my vision’s pretty good centrally, but I’ve got nothing peripheral, and I communicate verbally.

On the mental health side of things, I had depression when I was 16, which was15 – 16 years ago. 

I throw myself into my sport. That’s my main thing. I do practically every sport on the planet. Golf, Iron Man, Football, Soccer. Pretty much everything. That’s what really helps me. Not so much now. 

There’s plenty of support workers and things like that, now. But back when, obviously in the dinosaur age, when I was 16, there wasn’t really much around. so just sort of had to try and find your own way there if you could, but otherwise you just sort of lived with it. I think the main thing, don’t baby us is the main one. It’s just that, you know, yes, we have disabilities, but you don’t have to baby us. We’re adults, we know what we have, but just treat us like any other person. Just that it’s okay. 

You know, it’s okay to have mental health issues. There’s so much going on in the world. Everyone that’s able bodied have it and you know we have it harder than most. So, there is plenty of help out there. There’s plenty of Support Workers, Comm-guides and interpreters to help these days, unlike it was 15 years ago. So you don’t have to be isolated. Just reach out.

Hello. My name is Ally and this is my sign name. I am Deafblind. I have what is called Usher Syndrome Type 1 Which means I was born Deaf with vision loss and been like that all my life. So how do I communicate as a Deafblind person? During the day, I use what is called visual framing for signing, which is signing in a smaller signing space with hands held higher. If the lighting is too bad, then I use hand over hand or haptics. Oh, and Deafblind fingerspelling. 

I have had sporadic mental health issues throughout my entire life. I’m constantly anxious, have extreme nervousness, being overly fearful of the future, not knowing if or when I might go completely blind. It’s not a nice feeling. I just have to maintain positivity and keep going. I know I have plenty of support. I do have anxiety and most of the time when it happens, I feel extremely nervous. I’m always worried I might fall and hurt myself. It’s nerve wracking. I prefer being with a Comm-guide because I feel more safer in that situation rather than being on my own. As I’m getting older, my anxiety levels are getting worse. I had a terrifying experience when I had a fall, and I don’t ever want that to happen again. When I do have an anxiety attack, I just … I always go quiet. I might just need a moment and have some quiet time, until I can settle myself down. 

A few years ago, I was seeing a psychologist who wasn’t Deaf and I just felt she really didn’t understand how I was feeling and communication with her was not the best. I think I would much rather see a psychologist who had signing skills because I think they would have a better understanding and I would have more of a connection with them. Yes, I do have trust in psychologists because they’re professionals after all and will keep everything confidential. But in saying that, I would probably not go see another hearing psychologist again. I would much prefer to see a psychologist who can sign, so it’s just the two of us. I’ve had an interpreter before, a male, which was okay in that situation but definitely would prefer myself and an Auslan psychologist with no one else being involved except the two of us.

I would like to see all professionals, friends and Comm-guides to know that all of us Deafblind people have our own internal grief, sadness and struggles that we go through. We need to have positive feedback from you and like your encouragement. Because if we are patronised in any way, that makes us feel a whole lot worse. It’s best to offer that encouragement and be supportive. It gives us the motivation to keep going. We need that. I’m also encouraging professionals, Comm-guides, family and friends to attend a Deafblind World workshop. They have a range of activities that gives you an insight into what it feels like to be Deafblind. Like, covering your eyes with mask, giving you some tactile sensations, to give you a better understanding of what it’s like to be Deafblind and understand us better. 

I would also like all Deafblind people to know that they can always ask for help. If you need to talk, get it out. Don’t keep it to yourself otherwise it will get worse. I have been through a lot and learnt multiple coping strategies. Some activities I do are like bushwalking, cooking and more and that helps a lot and always makes me feel better. I encourage everyone to go to a Deafblind camp where you will meet so many amazing people and have an instant connection. Everyone going there has the same experience. You will feel much better afterwards.

Hi. My name’s Joe. I have Usher Syndrome Type I, Type 1 means I was born deaf, and later on in life around when I was 30, I was diagnosed with Ushers. I communicate using Auslan through a visual frame. So I sign in a smaller space. 

My past experience with mental health, I was bullied at school. Also, I’ve had bad experiences through my work career, which I was let off and it has been quite traumatic. So talking about mental health and how you can improve on that, I think it’s important to do things. I enjoy art and it’s a hobby of mine and it keeps me busy. It keeps my brain working and active, which I think is really important. I receive support from family, ex-workmates. I have wonderful — a wonderful art therapist who supports me. Psychologists just, yeah, people in general. But I think support is really important for my life. 

So experiences that I’ve had with barriers, regarding mental health. I live in the northern suburbs and most of the services are in the city, not local. So I would have to contact people in the city. There’s plenty of help in that area, but not near my home. So I think it’s important to have people locally that can support me. If there’s an emergency, I can contact someone in the local area, but the services are normally in the city. I have a wonderful access to comm-guides and interpreters, but not 24/7. So it’s very limited. I may have four hours a day with a comm-guide, you know, and I have support to get out in the community and I’m able to access things and communicate and do whatever I want to do, but once those 4 hours are finished, I’m by myself and I face barriers. I’ve got more time on my hands and it can be stressful for my wife and I don’t want to put that stress on her. And I don’t want to put pressure on her, so that is a barrier for me. 

Well, speaking about psychologists and counsellors, or welfare workers, or people that you deal with … In the past, those professionals don’t know much about deafblindness, and they don’t have the experience. And then I have to explain myself, and I feel like I’m educating people about deafblindness and what it means. 

I believe it’s really important for psychologists, counsellors to know a bit about deafblindness beforehand. And I think they could contact some agencies, whether that be Deafblind Victoria, DBA – Deaf Blind Australia, Able Australia. Those three wonderful organisations. People can get in contact with them and get some feedback and learn about deafblindness. I think it’s really important for people’s mental health. 

So speaking with a Deafblind person, if they live in the country far away, whether it be Tasmania or anywhere, and they’re quite isolated, don’t think you’re the only one If you were to see a Deafblind person, it’s common to have those similar experiences. So my advice would be contact peers, get peer support and share your experiences and don’t think you’re alone because we have similar experiences. 

In bed at night time, just lying there not being able to sleep overnight, you know, whether that be crying or being sad or depressed. For me, my experience is not being able to sleep and not having enough energy. So my experience with mental health issues, whether it be negative or a positive experience. When it’s negative, I feel alone. I feel quite withdrawn and hidden. You know, I might stay at home and not want to go out and about. But when my mental health is good and it’s improved, I feel so much better. I go out, I socialise with different people. You know, I keep active, I go walking. So it’s a very different experience.

My name is Rhiannon and this is my sign name. I use Auslan and I am Deafblind. 

My mental health struggles have been depression and anxiety. 

Personally, I’ve set up healthy boundaries. I do yoga, I go for walks and go swimming. I also enjoy reading, gardening and playing with my cat. That’s about it. 

The barriers I commonly face are number one: Waiting lists. Especially when I am looking for the right counsellor or psychologist. Number two: dealing with interpreter and support worker’s availability, and trying to work out how to fit in with my schedule. Three: psychologists and counsellors are not Deafblind aware and having to constantly educate them. I would like to see health professionals teach themselves various aspects of Deafblindness. I want them to understand the different communication methods and not feel awkward about it. Please just ask them, “How do I communicate with you?” Just be confident and assertive enough to ask. Never make assumptions and think is this right? Just don’t assume. 

Deafblind people already feel isolated enough from the community as it is. Missing out on social event opportunities and having to deal with that. I would like to see people try to be involved in conversation. Being invited to more events which will make them feel much better. 

Deafblind mental health experiences differ for everyone. Just remember, you are not alone. I want you all to be brave enough and advocate for yourself. Be determined in accessing the right help for your own mental health. If you need to access professional help like counsellors or psychologists, how would you do that? Go visit your GP with an interpreter to have a discussion. Your GP can then refer you to a suitable counsellor or psychologist for your specific mental health needs. Once referred, you can set up support services such as interpreters, support workers, counselling, or psychological support. And at the right time, your journey to mental health recovery can begin. Thank you.

Hello. My name is Lisa and this is my sign name. I am Deafblind that includes additional associated conditions. First of all is charge syndrome. Second is Pierre Robin Syndrome, which is accompanied with deafness. and I became Deafblind at the age of 21. being diagnosed with Retinal Detachment. My communication preferences are Auslan, Signed English, tactile fingerspelling, hand over hand signing. Using Auslan will depend on who I am talking with and their style of communicating. 

I was also diagnosed with minor OCD when I was 25. I went to a psychologist who diagnosed me with OCD because when I was about 13 or 12, I had anxiety, depression and anorexia. I do have regular psychologist support now that I am an adult, but when I was younger about 13, I didn’t have any access to mental health support at all. 

Activities I still do involve reading books, shopping, talking with family and friends and walking with my dog. Other community activities that I participate in are peer groups and I am also involved in advocacy work. 

I access community mental health support only since becoming an adult. And that included support with the right interpreter who will keep things confidential. There is no access to mental health supports in the home. I have the right to access mental health support services with someone who understands my needs and accessing mental health support with someone who understands my culture. 

I trust mental health professionals now that I am an adult, but definitely not when I was younger, I had no access to mental health support when I was younger. It was only since becoming an adult that I have mental health supports in place. I trust the professionals and mental health supports who I see currently, now that I have set up psychologist appointments and support on a regular basis. As an adult, I have that. But I was really struggling when I was about 12 or 13, and at that time, I had no support set up at all. I try to have the same interpreter with me, who I trust when I go to a psychologist or counselling appointments because sometimes I didn’t know if the interpreter I had was good or not. I want to keep the same one now because it’s important to make sure everything is kept confidential after appointments and that they don’t break that confidentiality afterwards. 

It’s important that professionals in the mental health area have some knowledge about Deafblind people. Make sure an appropriate interpreter is booked. Never be patronising, Empowering the Deafblind person and provide choices in regards to their treatment options and provide encouragement in a positive way. 

The Deafblind community have the rights to ask for help, and that can be through peer groups or asking for the right to an appropriate interpreter. They can ask to talk to someone or ask for family support or having friends group discussions. If you are feeling depressed, talk to friends or family or an interpreter, comm-guide or someone you trust that you can ask for help. Often people in the Deafblind group, women in particular, will ask me for a catch up or a drink to have a chat. They ask me for my consent to talk about mental health and we have open discussions about it. After any discussions within the Deafblind group or women’s group, people need to feel comfortable or even if it’s a men’s group, everyone should feel comfortable. Don’t disclose private information to anyone outside. It’s important to provide that positive support.

Hi. My name is Steve Ripley, and this is my sign name. I am Deafblind with retinal dystrophy, alongside a sensory-neural hearing impairment. Which basically means, I am profoundly Deaf without my hearing aids and without glasses my vision is extremely blurry. I mainly communicate using Auslan every day, with interpreters, using hand over hand signing. I use visual frame signing, depending on the amount of light there is and how hard my eyes need to work to adjust. But, in saying that, most of the time I use Auslan with hand over hand technique as my preference. 

I have had to deal with personal mental health issues, mainly, depression and anxiety. I get severely anxious and worrying about people talking around me and how will I be able to communicate. Currently, my main forms of supports are from support workers. They are great because the support they give provides me some reprieve and helps me keep going. Maybe going for a walk, looking around and letting me know what is going on around me. Or perhaps going with them for a drive can really give me a sense of calmness rather than being stuck at home. I would sit down and read. I love to read my Braille versions of books, and I also absolutely love meditation.

Focusing on my spirituality through meditation really soothes my soul and helps me in managing my mental health. Really, one of the biggest barriers I face, as an example is when counsellors don’t have that understanding of deafblindness. 

I have had a Deaf counsellor one time previously, who actually did have some understanding of deafblindness. That was a once-off appointment. They were based in Melbourne and I was based in Sydney. No one was available locally and the only way we could have sessions was via Zoom. But because I can’t see the screen, I needed to have an interpreter present with me but I felt awkward dealing with that situation. I would much prefer having face to face contact when they are providing support to me. So that was a huge barrier. On top of that, some interpreters may not really understand what I am trying to say. They may only have limited understanding of deafblindness. Most counsellors don’t understand what it’s like to be Deafblind. They assume the struggles I have is because of me being Deaf and blind but that’s not the reason. 

I have issues related to life, relationships and more. But they seem to believe, I only feel the way I do because of my deafblindness. But I just have normal, general life issues. I think what is important are things are family, understanding from the Deaf community and that deafblindness is not a constant. Vision can change at any time. Today you might be doing okay and tomorrow you’re struggling. Everyone needs to understand Deafblind people are not necessarily happy all the time. Yes, we do have issues to deal with that if left unchecked, will get worse. And it is so important to tell someone if you need help. 

I think that the community out there need to understand the actual impact of being blind along with hearing loss and how that can affect accessing information. It’s like it just stops. The world changes from day to day, but my life continues as normal. And if no one tells me what is happening, how do I know what is going on around me? We do get frustrated because of the communication aspect. Especially if there is nothing or limited communication. It’s important for people working in the Deafblind field to have at least some insight as to what it’s like for us. If you feel frustrated with that experience, good. That’s how we feel every day. It’s imperative at the times you are feeling the angst or anxious, to tell someone straight away. You cannot allow it to build up and build up. It’s quite possible it would break you.

Hello. My name is Carol Brown. I was born with Rubella, and I am Deafblind being fully blind in my left eye and have partial sight in my right. I use Visual Framing when communicating. 

In relation to my mental health, I was given a diagnosis of mild depression. I have had access to support via counselling and psychologists to help me move on in improving my mental health. 

I enjoy going to the beach, or having a swim in the pool, going for walks, reading, cooking and doing mosaics. I have shared discussions with some other Deafblind people about mental health, but not much with my family. My husband however, understands my mental health issues. 

Yes, I have trust in my Christian counsellor and psychologist who have helped me in moving forward in improving my mental health. And yes, they do have an understanding of me as a Deafblind individual. Yes, I believe that my Christian counsellor and psychologist suit my needs as a Deafblind person in helping me. My mental health has definitely been slowly improving but it will still take some time. Yes, both my Christian counsellor and psychologist have an awareness of Deafblind culture. 

Some Deafblind people share the same experiences with depression and mental health. My husband knows about mental health but family and friends, not so much. Whereas Deafblind people have a shared understanding of what they are going through. You definitely need to have that shared understanding of mental health.

If I met a Deafblind person struggling with mental health, I would be willing to share openly about the experiences we have in common maybe talk about counselling and supporting each other. They might be struggling more, but understanding what they going through can really help.

Hi. My name’s Heather. I’m Deafblind from a genetic condition, Ushers Syndrome Type 1. I grew up with vision being able to see, and later on in my mid-twenties, I slowly started to lose my sight. I am now fully blind … and I’m Deafblind. My first language is Auslan and I grew up using Auslan. Then later on I changed to a touch communication called Tactile Auslan, which means people signed to me using Auslan and I touch their hands and feel what they’re signing. It’s the same language because I grew up using Auslan, so it’s the same language that I have being Deafblind. It’s only in a touch form. 

So in my experience with mental health, I can do anything, and do things that make me feel good and I feel proud of myself, regardless of being Deafblind. I can go for walks with companions. I can go to the gym, or go swimming. I do hydrotherapy. I love joking as well and that makes me feel really good. The negative impacts of mental health, staying home, facing so many barriers and it really messes up my body and my physical health because people out in the community don’t understand deafblindness. There’s not enough support out there. If I want to do something, I can’t do it and it’s really disappointing and it really affects my mental health.

So for other Deafblind people who have lost their vision and they’re hearing an example of my experience when I started to lose my eyesight, I was really depressed. I was at home, I felt trapped. I couldn’t get out and I didn’t know how or what my future would be like. So I went and did some training. Before I was really worried and anxious because I didn’t know what to do, I didn’t have any experience. So I had some training and over time, I learned Braille. I learned to use a white cane. I learned to use a computer. I learned how to cook safely. I learned how to be outside in the world and I built up my skills.

I do still face barriers because people in the community don’t understand about deafblindness. And I think that’s a part of self-advocacy.

So my experience with barriers, it’s not going to stop. It happens all the time. And when new people come into my life, it’s just a natural thing that will happen. So just say I want to go into the community and I want to go and do something. I have to organise everything beforehand. There’s not enough interpreters or comm-guides or they may not be available. And it makes me really sad because I miss out and that can impact on your mental health. 

I think it’s important to meet other Deafblind people as well. Meet your peers, have peer support and have someone you can look up to. I think that will really help Ask for help. You really surprise yourself and you will look back and think, wow. Like me, if I look back and see where I am now, I’m really proud of myself. 

For psychologists or counsellors, just a bit of advice. Deafblind people are very sensitive to touch. If I can’t see a person in the room, I would like them to touch me. So when I arrive, if you can just come up and approach me, not just go straight into the room and sit down. It’d be nice if, you know, they would touch me on the hand and then we sit down and just acknowledge that I’m there. Or if I’m in a session and I’m getting things off my chest, it’s nice if someone just touches me on the arm because I don’t know their facial expression. I don’t know if they’re looking at me and it doesn’t make me feel good. Touch makes me feel so much better. And if you’re meeting a new Deafblind person, I think it’s important to Google online or have a look on some websites and research deafblindness before our session time because it’s just going to chew up my time and I feel like I’m educating you in my session and I feel that that should be separate.