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A MOMENT OF ME

Below is a growing collection of quotes, anecdotes and memories that give a glimpse into the lives of people who our organisation exists to serve.

The common denominator behind this collection of moments is that all the people live with disability. However, you'll quickly discover that the diversity of their experiences, personalities and interests are far too great to be boxed in by a label.

We will add a new moment on a weekly basis. 


If you would like to share your story with us, you can share it by clicking here.

We will read and listen to all stories and may feature them in our Moment of Me collection.


Tim

I think people when they see me, they just sort of see that there is a bit of, for want of a better word, facial disfigurement. And I think when they see that, they just put me in a box that meets their stereotype and they just go with that.

But when I walk around, I actually forget. I don't even think about the fact that my face looks different, and that's how I'd like to be addressed. I'd like people to look beyond the surface and go below.

I'd like to be seen as Tim Cahalan, the man who meets various members of the ALP, who reads extensively, goes to many movies a year, likes paintings by Vincent Van Gogh and L. S. Lowry, who listens to a wide range of music from rap to classical to musicals and soundtracks. That's who I am below the surface.

Esther

I contracted polio as a young child in South Sudan. Then I grew up in three different refugee camps in Uganda over 19 years.

I used to live in a shell. I did not put myself there. Other people put me there. People always told me what I can’t do. They said things like nothing good will ever come out of me because of my disability. They also told me I will never have children.

I proved everyone wrong.

I am now an Australian Citizen. I went to university. I have a Bachelor’s degree in social work and a Master’s degree in Mediation and Conflict Resolution. I am a single mother to two beautiful daughters. I am an author. My first book, ‘Beyond Calamity’ was published in March 2019. My second book, ‘Blessed: Raising two daughters as a single mum with a disability’ has just been published.

I actively raise disability awareness in the Australian African community, and also the wider community, through which I'm now regularly invited to speak at events, workshops and conferences.

I ran for parliament twice. In 2014, as a lead candidate with the Dignity Party, and also in 2018, I ran as number four on the upper house ticket.

For all of us who have been put in boxes, we should realise that's not who we are. People put us there out of ignorance. We need to get out of that box and educate people.

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You can find Esther Simbi's books here:

Beyond Calamity: http://vividpublishing.com.au/beyondcalamity/

Blessed: Raising two daughters as a single mum with a disability: http://vividpublishing.com.au/blessed/

Isabel

I was born in Singapore but lived in Malaysia for most of my childhood. We moved back to Singapore when I was 7 years old and now I live in Australia! Because I’ve lived in 3 different countries, it’s made me really adaptable – there isn’t one place that I really call home.

I was working in Singapore when I felt a sharp stabbing pain at the bottom of my neck. From here on I don’t remember what happened. The pain must have been so intense that my brain blocked the memories out. Later on my colleagues said that I had told them repeatedly my head hurt and they rang my dad who brought me to the emergency room at hospital.

It turned out I had bleeding in my brain which was causing the pressure in my head to increase. I required an operation immediately or I would die. I only remember what happened after waking from the operation. I had a tube in my head to drain the excess fluid, so I was bedridden. I stayed in hospital for 21 days.

When I was discharged from hospital, I had to do lots of walking to get my strength back. I was bedridden for so long that the muscles in my legs had shrunk. Luckily I was young and recovered quickly. All that is left from that time now is a small scar on my head from the surgery, which is hidden under my hair.

This experience has taught me that even if you’re young you’re not invincible.

After this, I came to Australia to study at university. In Singapore you need a Bachelor’s degree or you cannot get a job. As it is so densely populated in Singapore, it is really competitive there – in your studies, jobs, everything. This is what drove me to stay in Adelaide after my studies, and I successfully got Australian residency after 2 years of working in my field of study. I’ve been here for 7 years now!

Living here has taught me to appreciate little things more - life is short and now is always a good time to start doing things you love rather than live with regrets.

Tammy

Tammy shares how being autistic allows her to experience the world at a different level to others. It's enabled her to enjoy the richness of her environment when she travelled overseas.

She also loves how she is able to network and connect with others in her workplace, even if people are still a mystery to her!

Akii

There’s so much stigma around the word disability. Most people with chronic pain wouldn’t and don’t identify with disability, but I think it’s quite clear – if there’s something that impacts your ability to live everyday life, like if your pain stops you from doing all the things you want to do or you can’t brush your teeth without too much pain, then it is a disability. And that kind of thinking is quite unfortunate, because you might miss out on supports that you could be eligible for.

For example, my biggest passion is travelling. But I do end up crying the entire time that I’m on a plane because of my pain, it’s excruciating sometimes. And often, I have to take up to 3 days’ worth of medication just to get through that 16-hour flight. But obviously what people see is, “Oh my god, Akii’s travelling again. Their life is great, even though they’re ‘apparently sick’”.

This idea – the idea that disability should look a certain way – is what I’m trying to change with my work as Executive Director at Chronic Pain Australia.

Joseph

I have worked at Romeo's supermarket in Rostrevor since 2017. I got the job by coincidence. Romeo’s was sponsoring people with Down’s syndrome to go to America for the Dream Ride experience. And through that I met Joseph Romeo. He had the same name as me! I gave him my resume and they employed me.

Everybody in the store is nice. I like being personal with the customers, like talking to them when I help bring their trolley to the car. Sometimes it can be hard. Like when someone tells me to do one thing and another person tells me something different. Then I get a bit confused.

Now I work two 2-hour shifts at Romeo’s. But I really would like more hours, if I could. I want to become store manager one day. That would be a huge responsibility. But you have to apply online at a lot of places now. It’s hard to find work, especially now with COVID.

Tanika (2/2)

I have a podcast called Autism, Our Way, which launched during NAIDOC week. It is a podcast for everyone, not just people who identify as Aboriginal and Torres Straits Islanders. The podcast facilitates conversations from Aboriginal and Torres Strait Islander people from all over Australia. I talk with parents who are advocating for their children who have autism; there are also people working in a professional space, like occupational therapy, who share their experience on the podcast. It is a way for me to reach communities and talk about our journey with autism, to be open and honest about how we’re moving forward in our lives. I’m hoping to have an international podcast series in the next 6 months, to feature people from other cultures talking about their experience with autism, linking culture to those conversations.

As a mum, I just want Slade to know he is worthy and be loved. It is scary for me to let Slade go out in the real world, but I know I can’t be with him every step of the way. I just want other people to be open with who he has as a person and not judgemental. I want him to be happy and know that there are people out there who care.

The most important thing others can do to help Aboriginal and Torres Straits Islander communities is facilitating conversations. Start by providing a safe space for different cultures and making links to the local community.

Tanika (1/2)

I’m Tanika, a proud Worimi woman from the mid north coast of New South Wales. My son Slade was diagnosed with Autism Spectrum Disorder in late 2018. Since then, I have been advocating for him and for autism awareness in Aboriginal and Torres Straits Islanders communities. That’s why I started my business – the I Am, Movement, to facilitate conversation about autism in Aboriginal and Torres Straits Islander communities. I wanted to let people know that it is not a shame to talk about disability, and I hope that sharing my son’s story will help others in similar situations.

Slade is now 4 years old and he goes for occupational therapy and speech pathology. While attending these appointments, I saw there was a lack of culturally appropriate resources to help my son develop his identity as an Aboriginal man. I think it is important to facilitate the development of that identity not only at home but also in the community. We know that Aboriginal people are behind in many aspects of life, like education, health, housing and financial stability compared to the majority of Australians. These communities also hesitate to seek support for a disability because they worry about the cost of diagnosis, long waiting periods and sometimes there is a lack of accessible healthcare services in regional areas.

For me I want my son to be proud of his culture, to know that his ancestors are guiding him for the rest of his life. And for that to happen, you need to link your identity back to your culture, to be strong in your identity.

I feel that there is a lot of embarrassment around disability in the Aboriginal and Torres Straits Islander communities. You’re being stigmatised not only for being Aboriginal, but also for having a disability. The family is seen as being ‘different’; there is a lack of knowledge on autism in these communities. You get socially isolated, which is something that sticks out to me as we are really family oriented. It’s not different from disability in non-indigenous people at all, but when you are talking about Aboriginal people being proud and open about who they are, that is the thing that is different if they have a disability.

Mike

“I discovered that by using my white cane skills that I felt a great sense of self-confidence and self-worth, but it took breaking that first barrier of being prepared to come out as a person with a disability and not hide away.” – Mike

Annie

I recently found out I have Kaurna background. My five times great grandmother, is a very famous Australian woman - Rathoola. She was the only Aboriginal woman that ever took the Supreme Court in Adelaide to court for not allowing her to marry a white man.

I found out about my Aboriginal background when a woman called Maria rang me, saying that she was my cousin. I didn't believe it at first. But then she sent me photos of her Nana.

Oh my god, I nearly fell off the couch. When I was looking at that photo, I started to cry. The woman in the photo was the same colour as me. The only difference is I've got blue eyes, she's got brown eyes. Same kind of hair. The way she's standing is the way I stand. The body language of the photo was like wow, totally blew my mind. And then I believed that this woman in Melbourne, Maria, was my cousin.

I want to know the Aboriginal side of my family; I want to know who my real family is. Because you can't deny your roots. I grew up not knowing who my real family was.

Zuzia (2/2)

Music is a big part of my life. I wanted to combine my two favourite things, helping others and music, so this led to me volunteering for the music appreciation group at Guide Dogs SA. We meet every month to socialise and connect over music. At each meeting we’ve got a different performer, like a singer or instrumental player that we listen to and enjoy as a group. Then we discuss about what we liked and disliked about the performance, and sometimes there’s a Q&A time with the performer.

And a big part of my volunteer role there is contacting and organising the performers and assisting with behind-the-scenes work during the meetings. It’s taught me a lot about Australia and how sometimes we don’t need to sacrifice lots of things to make people happy.

And it showed me the power of music, it reminded me that not only was music powerful to me, but it could be powerful for others too.

One of the hardest parts of my disability is that my eyesight is never stable and progressively deteriorating. I don’t have time to adapt to a new change before another one comes up. I’ve learnt to be responsible in maintaining my diet to prolong my eyesight.

What motivates me to keep going is my passion for music. I’ve been singing since the age of three, and this helped me to express myself when I couldn’t understand my disability. I’ve learnt that a lot of the time we create boundaries that stop us from doing things. So I like to try things and never assume they are impossible.

Zuzia (1/2)

I grew up in the western south side of Poland. At the age of three and a half I was diagnosed with gyrate atrophy, which is a protein disorder that causes progressive vision loss. At the time I did not understand why my eyesight was unstable, and why I had to follow an extremely restricted low protein diet. It took me a long time to understand it.

In 2010, my family came to Australia for 5 weeks on holiday. Dad fell in love with the country, but we weren’t keen to move at first, until mum had a major stroke. After that she realised that life can be really unpredictable, and if it was dad’s dream to move to Australia, then we shouldn’t waste time to make our dreams come true. I was really against moving but I had no choice because I wasn’t an adult yet. When we moved here, I couldn’t really communicate in English, and didn’t start school for a long time until my health assessments were all done. I didn’t enjoy my beginnings in Australia, because I felt that I had such a short notice from my parents that we were migrating that I never had enough time to see people I cared about in Poland. For the first 3 months the only people I was around were my parents!

There are definitely a lot of things that are different between Poland and Australia. People are more kind and keen to help even if they don’t know you. But it was hard to build a strong connection with others and make friends, because people seemed less open to share their personal experiences.

Tammy

Tammy shares why being labelled autistic is so important to her, and how it helped her to understand why she felt and saw things differently from others.

Daniella

There have been times when I’ve been asked on a form, ‘Do I have a disability?’, and I have written no. Because if I can do everything that is relevant to the task in question, how am I disabled?

Stephen

"If I didn't have this transplant, I would be dead by now. Because a transplant is not offered, unless you've got less than two years to live."

Stephen has had respiratory issues since he was a child. As he got older, his lung problems got worse. When Stephen became the recipient of a double lung transplant, his life changed for the better.

He shares his story with us in this Moment of Me, which is the first story to be filmed entirely on a mobile phone.

Jorja

I have travelled to New Zealand, the United States and the United Kingdom, but one place I really enjoyed was London. I was in a long-distance relationship with an Englishman at the time, and that gave me the courage to visit the UK, knowing that I was going to stay with someone I knew. To my surprise, many of the old buildings I visited had better disability access than I thought they would.

It’s the law in the UK that major tourist attractions must provide information on disability access through the publication of Access Guides, which are usually available online, and printed copies are available onsite too. These are guidebooks with information on accessibility, transport and information for parents.

I was able to plan my trip more effectively because of the access information available online. I was able to decide that yes, there are some things that I’m not able to see because some buildings are 1000 years old and there are stairs or uneven surfaces, but there is enough that I can see and do that will be worth the admission fee.

Because of my experiences in the UK, I feel that a lot can be done in Australia to make things more accessible to everyone. It would be helpful if it was law for tourist attractions to have accessibility information on their websites because this is information that people like me look for when planning travel. It all comes down to educating people as well. I have noticed in Australia that most people are unsure what an accessible room is.

Accessibility and inclusion are things that I’m passionate about – I’ve been working with Baptist Care SA for 2 years, helping churches become more inclusive and accessible to everyone. I have also written several reviews on TripAdvisor from the point of view of someone with a physical disability, to enable other wheelchair users to have the knowledge required to plan their travels. My review is sometimes the only one that mentions wheelchair access. I was even quoted in a blog written by TripAdvisor about “top tips for visiting the world’s top museums".

Rachele

A disability should not be a barrier.

Being a woman should not be a barrier.

Being old should not be a barrier.

Being young should not be a barrier.

What colour your skin is should not be a barrier.

What you do, where you live, should not be a barrier.

The barriers are human made.

They are never a given with your human condition. We just make them up.nWe are now at the stage of life where we are challenging those made up assumptions. Let’s unmake them.

At the end of the day it is all about our humanity.

You know, no one with a disability must ever be told that they are a burden on society. Or they have no worth. We are millions of years of DNA uninterrupted. That alone is to be celebrated. You know if someone 500 years ago fell in a ditch and didn’t procreate, in that month, in that day, at that minute, that person with a disability wouldn’t be alive. Each person’s life is a celebration of uninterrupted lineage of millions of years. You are here. So let’s celebrate that!

H.J. (2/2)

I am now a published author of multiple genres; under the Pseudonym of “H.J” (#AuthorHJ). I got into writing as an outlet to cope with my grief and anger. It has been my passion since I was 14 years old; starting with poetry. During high school I decided it was something I wanted to do on some professional level. When I was 19, I released my first fiction publication, and it grew from there. Today, at age 25, I have returned to my poetic roots but also increasingly find myself discussing mental health and social justice issues, through my words.

I try to write about things from a recovery-oriented, peaceful, stance; and share a different perspective for myself and other people. The reward is being able to relate with people & support them. It is nice that my pain and my story have a benefit somewhere.

And – as Heaven Smith – I am otherwise a recognised human & disability rights advocate whom has been most recently nominated for Canada’s “Emerging Leader” Award and also another “Global Leadership” Award nomination; related to said advocacy work, predominantly within the housing, educational (access) and mental health (wellness and resource) sectors.

What I’ve learnt from my disability is a deeper sense of self awareness. It made me appreciate my capacity for resilience. My experience cannot preach for all experiences, but I would want to tell others that “You are your own expert. It’s important to find a health team that will build with you, rather than dictate for you; And don’t give up on yourself, if your team’s first answer is ‘No’.” The lack of access and subsequent lockdowns from COVID-19 have been quite similar to my life experiences and similar to many of the barriers that the disability community faces every day. It is my hope that this collective experience becomes a gateway into a deeper, more respected conversation around Disabled Rights issues.

I intend to come to Australia for university. When I arrive, I am excited to join in continuing accessibility and awareness efforts. Absolutely, everyone is born with skills and value, and deserves the adequate space and nourishment to be able to hone them.

H.J. (1/2)

My name is Heaven Joy Smith. I am currently 25 years old and from Kingston, Ontario in Canada. My background is Welsh, Italian and Greek. I have a physical disability with a neurological condition called dystonia, and I use a wheelchair.

Growing up in Canada was difficult for me. I was cut off from lots of aspects in life, like education and inclusive socialisation. In high school, I missed a couple years because I could not access some of my classes due to lack of wheelchair accessibility. It turned into a massive human rights battle. In the middle of my 11 year, they finally installed an elevator; Until then, I was doing my course work in bulk and was forced to choose ground-floor classes that never usually matched my goals or interests. This dictation made it difficult to form a healthy sense of purpose or self-identity; though I managed to graduate with honours.

A similar thing happened in college (2018 to 2019). I was taking Social Sciences then. Accessibility on campus was great, but getting to campus was nearly impossible in winter. In Canada we have snow in winter which makes it hard to get to the bus stop. So, I began working with the campus to come up with a solution. As I was leaving and about to once again become a distinguished graduate, they had started the process to create a campus accessible bus line for all disabled students. It was cool to have a part in that.

Mr Peter and Mrs Debbie W.

People like us with intellectual disability want everyone to know that we have rights like everyone else.

We have a good life.

We have been happily married for 28 years.

We live in Port Adelaide.

We barrack for Port Power.

We live close to the shops, library and the police station.

We go for walks and we love walking near the Port River.

Recently, we have been sad to see on the news that other people with disability have been badly treated.We want everyone to know that will NEVER happen to us! We know about our rights and we are not too scared to have our say.

Mike

To me, a person with disability is somebody who is on a journey which is more challenging, but more society and personal changing than most people get the opportunity to do. So I can think of my own experience as a parent, for example, that I've had to learn lots of things-- as all parents do-- and some of them, a little bit differently to somebody who is not blind.

But the wonderful thing to behold is how our children have had to learn. I remember my daughter was volunteering for a YMCA program called Sharing the Fun, which was building up the personal and psychomotor confidence of children so they could be better at participating in the playground at school, and kids who might have serious illnesses or various impairments.

And she was interviewed one day. And the interviewer said, well, you don't have any disability. How come you're doing this sort of work? What do you think about people with disability? And she said, oh, I grew up with my dad. He's totally blind. I mean, disability is no big thing.

And I thought, yeah, that is a way in which people with disability can transform the world around them, to remove some of the roadblocks that we've often experienced. Not by actually going out and running a campaign on it, just by living and breathing and connecting with other people in a way where we accept who we are, but don't feel that we have to accept the negative and limiting attitudes of even those close to us, let alone the wider community around us. And that can be so transformative.

Fatimeh (2/2)

It is difficult. I had to make lots of sacrifices to come to Australia. I have never personally experienced discrimination, but I have heard stories from other migrants where they have been discriminated. I appreciate what the Australian community has done to help us, but I want people to understand that we had no choice when we left Iran. We went through a lot. We had to leave everything behind.

Now I am coping better. I know 2 other migrant families through my daughters’ classmates. I still want to build my network in Australia. My daughters are going to high school soon. When they do I will try to connect with parents of other students.

I have many worries. Our future is in limbo because we do not have a permanent visa. We will be eligible for permanent visa soon, but we are not sure if our visa application will be successful. I try not to think about that. I only hope that my daughters can live independently here in Australia. Both of them, especially my eldest, feel that Australia is their home now.

 

سخت است. من برای آمدن به استرالیا٬ زیاد فداکاری کردم. من هیچوقت شخصا٬ تبعیض را تجربه نکرده ام٬ ولی داستانهایی را از سایر مهاجرین که مورد تبعیض واقع شده بودند٬ شنیده ام. من از کارهایی که جامعه استرالیا برای کمک به ما انجام داده است قدردانی می کنم٬ ولی می خواهم مردم بدانند که ما زمانی که ایران را ترک کردیم٬ راه دیگری نداشتیم. ما سختیهای زیادی را متحمل شدیم. ما باید همه چیز را رها می کردیم.

 

درحال حاضر من بهتر کنار می آیم. من دو خانواده مهاجر دیگر را از طریق همکلاسیهای دخترانم می شناسم. هنوز می خواهم که شبکه تماسم را در استرالیا افزایش دهم. دخترانم به زودی وارد دبیرستان می شوند. زمانی که آنها وارد دبیرستان شوند٬ من می خواهم با والدین دانش آموزان ارتباط برقرار کنم.

 

من نگرانیهای زیادی دارم. آینده ما در وضعیت معلقی قرار دارد زیرا که ما ویزای دائم نداریم. ما به زودی واجد شرایط ویزای دائم خواهیم شد٬ ولی مطمئن نیستیم که درخواست ما با موفقیت روبرو خواهد شد. سعی می کنم به آن فکر نکنم. تنها آرزویم این است که دخترانم بتوانند اینجا در استرالیا مستقل زندگی کنند. هردوی آنها٬ به خصوص دختر بزرگترم٬ درحال حاضر استرالیا را وطن خود می دانند.

Fatimeh (1/2)

I am from Iran and I came to Australia to give my twin daughters, Hediyeh and Haniyeh, a better life. In Iran there is limited support for people with disability for everyday life. Things like travelling to places, attending social events and access to education are difficult. My daughters do get the support they need for their disability in Australia, but this is from donations, fund raising and charities because we cannot access the NDIS.

My daughters are 14 years old and born with cerebral palsy. They have limited speech, but can communicate by using a iPad app called PODD. They have a lot of hobbies. Both love music, and one likes to play the piano but she cannot do it for long because of her physical disability. I help them with handicrafts, and they like to swim too.

I only know one parent who has a child with disability. About seven years ago, I went to a support group for parents who had children with disability. I wanted to connect with other parents in Australia. But because of the language barrier, I was not able to communicate well with the group, so I left.

من اهل ایرانم و برای اینکه زندگی بهتری برای دختران دوقلویم٬ هدیه و هانیه مهیا کنم٬ به استرالیا آمدم. در ایران٬ حمایت محدودی برای افراد معلول برای زندگی روزمره موجود است. مواردی مانند جایی رفتن٬ حضور در وقایع اجتماعی و دسترسی به آموزش سخت می باشد. دختران من حمایتی را که برای معلولیتشان نیاز دارند در استرالیا دریافت می کنند٬ ولی این از طریق اهداها٬ جمع آوری اعانه و خیریه ها می باشد زیرا که ما قادر به دسترسی به  NDIS  (بیمه ملی معلولیت) نیستیم.

 

دختران من ۱۴ ساله هستند و با فلج مغزی به دنیا آمده اند. گفتار محدود دارند ولی با استفاده از اپلکیشینی به نام PODD با آی پد٬ ارتباط برقرار می کنند. آنها سرگرمهای زیادی دارند. هردو موسیقی دوست دارند٬ یکی از آنها دوست دارد پیانو بنوازد ولی به دلیل معلولیت جسمانیش نمی تواند به مدت طولانی پیانو بنوازد. من در زمینه کارهای دستی به آنها کمک می کنم٬ و آنها همچنین شنا کردن را دوست دارند.

 

من تنها یک مادر را که فرزندی با معلولیت دارد می شناسم. حدود هفت سال پیش٬ من به یک گروه حمایتی برای والدین فرزندان معلول رفتم٬  می خواستم با سایر پدر مادرها در استرالیا ارتباط برقرار کنم. ولی به دلیل مشکل زبانی٬ نمی توانستم با گروه خوب ارتباط برقرار کنم٬ در نتیجه گروه را ترک کردم.

Ashley

My name is Ashley and I live with disability. I don't like getting teased and this has happened to me all of my life but I have learned not to live in the past.

I have a very positive future and I like working one day a week at an "Op Shop".

I fill my mind with positive thoughts. I like to think about music and my dog Delta. I named her after my favourite singer Delta Goodrem.

My advice to people who are being teased would be to ask people to stop teasing, Ask nicely and if that doesn't work, just walk away.

For those people who tease others, think about how they would feel if it was them being teased. Not nice at all.

Nadia

One thing that I really miss during this time is going to the pub. When I heard that pubs and restaurants are opening again, I was really happy. I am glad that things are slowly going back to normal. I can go to the hairdressers and shopping with my support person now. I even moved houses in May!

At my old place, I stayed at home to stay safe from the virus. I watched DVDs to stay busy. My favourite show was All Saints.

I also stayed connected with my family and friends over the phone.I went to see my family in Bordertown for 4 days. It was good to see them again after a long time.

Tracey (2/2)

It was this experience that you could say brought me out of denial because on my return to Adelaide, I learnt how to use a PC with the help of assistive technology – I use my chin to type! Since I started using the computer, I have met so many people through social media. I run a Facebook page called We Are LiS Survivors, which I use to share my story and encourage others to do the same. I also have a Youtube channel.

Another good that came out of this was that I reconnected with family from Perth and got in touch with old school friends from primary and high school. It has been absolutely amazing!

“I will win not immediately but DEFINITELY.”

Recently I won an award at the International Day for People with Disability event, and another from the Stroke Foundation. I’m very surprised and chuffed to win both awards, but then I have come a long way since my stroke.

Tracey (1/2)

I was 19 years old when I had a rare non-blood related stroke caused by an abscess on my brainstem pons (think of the brainstem as an apple and the seeds are the abscess). I was in a coma for 3 weeks, I wasn’t supposed to wake up! I survived, but with a condition called Locked-in Syndrome, I could not communicate verbally or move.

I came to Julia Farr Centre (now called Highgate Park) in 1993, 13 March. My nana’s birthday. For the first 5 to 6 years, I didn’t go out in public. My reason for this was that my face was severely affected, and if I couldn’t cope with the way I looked, then how could the public! I was also in deep denial and depression for 19 years! All I had was mum, nurses and TV. Even when technology improved I refused to learn how to use a PC.

When I did start going out, I would only go out with mum. It wasn’t until my birthday in June, 2008, when my nana rang me and I heard her voice. There was something in her voice that told me that I had to go see her now, but she lived in Perth. How was I to get to Perth when I had a disability? I mentioned to Ross, my carer, about wanting to go to Perth. Unknown to me, he had done it all before, and soon enough I was on a plane with mum and Ross to Perth.

Belle

I have a family history of extreme respiratory issues and I have small lungs, so it was my doctor's advice that I fully isolate. It is coming up to nearly 70 days this week.

I have a partner and he’s unable to fully isolate because he lives with someone who is an essential worker and unable to work from home. So we’ve been physically apart for this entire period of isolation. We’ve been thinking up different strategies to stay connected. We’ve ordered the same ingredients so that we can cook a meal together over FaceTime. That was really fun. And we’ve been watching things on Netflix at the same time. We’ve also been listening to a collaborative Spotify playlist.

I have really large windows, and we’ve been having picnics through the window. I’ve got a picnic blanket that I’ve put out there and some cushions and blankets. It’s nice that we can actually see each other, and not have to look through a screen. There’s the nuance of body language that you miss through a screen. I think it is really good to stop and reflect and congratulate ourselves for thriving at time when things are really hard.

Michael

I have had a disability all of my life. I have lived in a lot of different places with a lot of different people.

Sometimes, my life has been difficult and I haven't always been very good at dealing with the difficulties. Sometimes I got angry.

Last year, along with some other people living with disability, I joined a group. We call ourselves the People's Advocacy Group.

I have been going to meetings with them and to Our Voice SA and I have learnt about self-advocacy. This year I learnt about Human Rights. I didn't always understand about my rights. I still don't understand it all but I know that I can talk to people rather than get angry.

This has helped me a lot.

Jane

I’ve had to be more creative in finding ways to stay active due to the coronavirus, since all my usual activities, like dragonboat and pilates, have been cancelled. I’m always been an active person. To stay fit now I am doing bike riding, about 10 km daily! Also, I have been doing my physio exercises at home.

 

Being stuck at home doesn’t have to be boring. You just have to be creative and think of another way to do your normal activities. If the gym is closed, exercise at home. If you can’t go to the library, borrow audiobooks to listen to instead. And there are lots of videos you can watch on Youtube these days. Ipads are also good to keep entertained – I play Sudoku on mine to stay mentally active.

Jane

It is challenging times for everyone, but I would also like to add, that maybe it is having a bigger impact for people who don't live with disability because I find that people living with disability, every day we have to problem solve, every day we have to figure something out, so it’s not that different. Maybe we are just doing it on a larger scale now.

Still, it is hard to be isolated inside. But there are a lot of positives for me. I’ve probably talked to my friends more. I am getting lots of phone calls and messages from people I wouldn’t talk to day to day.

I think the greatest thing I’ve learned is to be grateful for what I do have. I realise I have a lot of support.

My friends and I challenge each other to try to do a new activity every day. We will sing a song or play a game over social media. A big part of that is just about taking our mind off coronavirus. It is really valuable to know you are allowed to stop and push it aside.

My family also sets a challenge about how many times a day you can help someone. That one is good, because every day I wake up thinking, ‘How can I help someone?’. That helps me to get through this this time.

I also say for every day that I stay in the house, at the other end of all of this is a day of fun, partying, seeing friends in the community, drinking coffee. If everyone thinks that way, at the end of this isolation, Australia will be having one big party, which will be awesome!

Maria

I went outside and as I went down the pathway, my banana tree reached out and it just put its leaves around me. I thought that's better. You are allowed to cuddle a banana tree.

Tony

Being stuck at home means that I have to find ways to keep myself occupied. This morning I took my guide dog for a walk and when I came back I made myself a cup of tea. I have an exercise bike at home, so it’s easy for me to maintain my fitness. When I found out that the library was going to close, I borrowed a whole bunch of audiobooks, about seven! So I have been busy listening to that and checking emails to stay connected with others.

I have a son working overseas who recently returned to Australia about two weeks ago. He has had to isolate himself for 14 days since he came back. We have been keeping in touch and this Wednesday we’ll be able to meet him in person, which is good.

Anonymous

At the moment all is good. I have been asked to stay home from work as I am unable to safely stay 1.5 metres away all the time.

I am looking at it as a holiday and am spending the time sorting through my emails and tidying up and sorting out my drawers. When it is nice and sunny, taking a walk in the sun is an amazing and stimulating experience! Everyday I write a list of things that I would like to achieve and try to get through it.

Positivity is a state of the mind. I try to bring back all the good memories from my life and it makes me smile. If not so good memories come back, I think about how lucky I am that I saw the other side of a bad time.

Jade

I’m 26 and have been living with renal issues and complications with my bladder my entire life. Multiple surgeries, infections, antibiotics and medications are part of my life and I’ve often faced much pain and discomfort. I could never trust my bladder and often had accidents that left me feeling embarrassed.

When I was 13, I was told I needed to have surgery every 6 months and would need to self-catheterise. I hated this thought but turns out it was the start of me turning things around.

With hard work and determination, I got through my university degree in fashion design and became a fashion technician. I was then able to acquire a job at Australian Fashion Labels.

Last year I had a pacemaker implanted into my lower spine to help gain bladder control. The surgery was successful but the stress on my body triggered reoccurring seizures that lead them to discover my low blood pressure was causing my heart to stop.

I am lucky to not need a heart pacemaker but still suffer from the occasional seizure (often triggered by sickness or altitude on aeroplanes).

I’m sharing my story to inform others there’s no need to be shy or embarrassed of an illness. I’ve been there and feel I have matured, and I’ve accepted who I am and know that people admire me for my resilience and strength.

Moly

I’m a gardener, a ballerina, and I’m from the country. I’m getting married at the end of this year. I already have my dress hanging in the closet. I sure hope this coronavirus is over by then. I want to get married in the church with my family and friends.

I’m currently living under quarantine in a residential support care facility. We aren’t allowed to leave for the next 14 days at least.

At first I was angry. But now I do understand why. They are trying to look after everyone and make sure we are safe and healthy. Now I feel calm. I hate this virus, but I think quarantine is a good idea.

My advice to others right now is stay safe. Wash your hands. Keep active. There is so much you can do. Colour, make art, play games, call your family, have a makeover, have a fashion parade, do some gardening, read a book. I read about 3 a day.

I also start each day with a positive thought. If I still feel anxious, I close my eyes and count to 10. I’ve been doing that since I was four and I am now 26.

Ricky

I live in Melbourne and I've been either mostly or completely homebound for twenty years and counting. One thing I really didn't anticipate is how angry I've been this week while things I've begged and pleaded for as accommodations that have been impossible to manage in the past are now just popping up … I want to just be able to relax and enjoy them but knowing that they only become possible because other people needed them AND that they'll almost certainly mostly disappear again once this is over, it's really hard not to rage at the world. And I am not normally an angry person. It's a very weird experience.

One thing I've had HUGE problems with in the past is not being able to sign for parcels. I've begged and begged Australia Post to just freaking leave things at my doorstep. I've offered to sign things saying I won't hold them liable. I've explained how difficult and time consuming and unhelpful it is when they card me. And now magically this week they're doing it.

Media being available online is another one that really got me. I've missed out on concerts and film festivals for 25 years and every single time people explain how intellectual property law makes it impossible. I've seen two concerts and a film festival live-streamed in the last 5 days!

The first time I just laid here and cried because I was so freaking angry and upset and then also upset at myself that I couldn't just enjoy it while it was here.

The one good thing (aside from having stuff to enjoy) is that afterwards when people say these accommodations are impossible, I'll at least be able to point out they literally DID them. But everybody has always known that "these accommodations are impossible" is a lie, so I'm not even sure how much that will help. I'm very afraid of how I'll cope when all these things I need disappear once able-bodied people don't need them.

Craig

I didn't know I could stand up for myself but since attending the Our Voice* SA AGM and coming to the training, I now know that I have a voice - AND I CAN USE IT!

* Our Voice SA is a group of people living with intellectual or learning disability who meet once a month to talk about important issues. A big theme is self-advocacy. For more information about Our Voice SA visit https://www.ourvoicesa.org.au or email Karen on karenr@purpleorange.org.au

 

 

 

Tiffany

I am a big believer in not letting my disability stop me from doing anything. 

I’ve done some training in graphic design and I’ve studied counselling. I’ve got two jobs I love. One as a graphic designer for Blend Creative and I also just got a second job working with The Art of Being Human. It’s an organisation that supports people that experience homelessness and vulnerability. My role is as a social media representative and it also utilises my counselling skills. I’m earning good money and the job is amazing. It is giving me a new lease on life. 

The other day I was at an event with my new boss and someone asked me, “How can you help other people when you can’t even look after yourself?” 

My boss nearly jumped down their throat saying, “How dare you ask Tiffany that!?” 

But I wasn’t angry. I just said, they are just like a naïve little kid that doesn’t know anything about disability.

Walter

I’ve got a good sense of humour and outlook on life. I’m not taking it too seriously. Enjoy life while you can. Life is short. Get out and live it. Get out and talk to different people. If they like what you got to say, that’s great. If they don’t, go, "Bye Bye."

Craig

Just because you have a disability, it doesn't mean that you can't live a full life. Next month I am leaving for my fifth cruise.

Ricky

I get to think about things that most people don’t get to think about because they're rushing around all the time.

I can spend 20 minutes every day watching a flower that's coming into bloom, or get to know the possums that visit the tree outside my window. There are flowers that come out in the morning but then go away when the sun is really bright. There are flowers that only come out in the evening after the sun is set. And then there are other flowers that come out in the middle of the day.

Every year I get really excited in spring when the leaves start growing. There's so much hope and possibility in a brand-new leaf. It just seems like a microcosm of all the good things in the world. New life, whether it is a baby, kitten or a tiny leaf, makes me feel hopeful and optimistic.

I get to enjoy really small things. I get like a ridiculous amount of enjoyment from staring out the window. And I make a joke out of it but, it is almost like I'm on a permanent semi-meditation retreat. 

I mean, this is very much the silver lining version of it. I work pretty hard to see it like that because, I mean, the alternative is being kind of depressed or upset or angry at the world for being unfair, which of course it is, in so many ways. I do tend to look at everything from the most positive possible perspective, even to the point of being a little bit unreasonable. But if I can convince my brain that it's okay that I can be happy, then I'm going to do that whether or not it's realistic.

- Ricky Buchanan on looking at the positives of being bedridden and homebound.

Candice

Please don’t feel nervous [talking to a deaf person], because deaf people are just like them, just like everyone. It is just that they can’t hear, that’s all. So we can still communicate. We can still work. We can still do, you know, lots and lots of things. And you can mime. You can find a different way to communicate.

Ben

I currently have a best friend. I can tell all my worries and emotions to him. He's a good listener and I like that he's honest and a good friend. No matter who you’re with, make a friend everywhere. Be extra nice, accept who you are, make new friends. All you need to care about is you, your well-being and your friends.

Mark

My name is Mark and this is Buddy Jr.

I train him myself. I’ve done an online course – Dog Psychology and Training and then I just started at the National Dog Training Federation which is really in depth but that’s where I learnt all the trick training and I’m also learning the scent detection side of it so I know how to train for people that have seizures or anything like that.

There’s a lot of difference (between training a service dog and training a pet dog). You have to keep them calm. It’s not like an hour’s worth of going around in a class with sit, drop and stay. Every day they have to go into all different environments and they have to stay calm and continue all throughout the day. You have to teach them that they’ve got a job ahead of them at all times and teach them that when their vest is on, they’re working.

Then when we get home it’s play time and he can do what he wants. If he chews up my lounge, if he smashes the television, whatever he does wrong, he will never get in trouble. So he learns that his reward for being the best behaved and looking after me during the day is when he gets home, he can just be a dog, running around and being silly.

They can do so much for you. They can make you so independent.

If you were going to get one I would research. Learn as much as you can so then when you get it you know what it’s capable of and what it can do for you and how it can assist you. You have to think that you not only have yourself anymore but that dog becomes a part of you. It’s not like a pet dog in the back yard, it could potentially save your life one day.

Senator Jordon Steele-John

The sub-conscious ways that disabled people are perceived in society translates into the built environment. We need to make spaces across the country accessible and inclusive for everybody. It has a massive effect on every part of your life. If you can’t access your community, it leads to poorer job opportunities and social isolation.

What we are doing is building in a form of cultural apartheid in Australia. Where there isn’t a ramp or an accessible building, imagine the reaction if the building said, ‘No blacks allowed’. Most of us would be outraged. But that’s the message we send to disabled people when we fail to correct the mistakes of the past.

Steven

My name is Steven. I was born deaf, and throughout my life I started losing my eyesight.

I am very accepting of being Deafblind. It took a long time. It wasn’t until I went to America and met other people who were Deafblind, and shared experiences and gained confidence. I lived in Seattle for four years and studied at the University of Washington. Since then I have accepted my disability and have been very positive and motived.

I learned sign language when I was nine. My vision started reducing about 10 years later. At that point I was learning to use hand-over-hand*.  By 50, I was using hand-over-hand sign as my primary mode of communication.

I also use written English, and I am able to use my iPad to communicate with other hearing people in the community. My iPad needs to be set up with a black background and large white font. If my iPad is set up like that and if I take my time, I can read it.  

Deafblind awareness for the hearing and mainstream community is absolutely paramount. By that I mean awareness of what it is like to be Deafblind, the communication methods that we use, and improving their skills at Auslan.

For a hearing person that may not know anything about someone that is deafblind or someone with a disability, they can be quite discriminatory. Some people just don’t take any notice.

When I communicate with other Deaf people, I can communicate easily and fluently. But if I am at an event with hearing people, I will book an interpreter, that way I can still have fluent conversation with everyone around me.

There was a time where I felt quite lonely, when I didn’t have access to my community.

Having NDIS funds has provided me so much access. It’s my second year now, and since I have had my NDIS plan, I’ve been able to get involved in my wider hearing community through access to interpreters, support workers and technology. I feel much happier and more confident. I am not feeling lonely like I was.

I am a very outgoing person. I like to get out a lot, walk, see my friends, socialise, meet new people. I love my work. I am working for Royal Society for the Blind, so I am really enjoying that. I’m quite a happy man.

 

* Tactile or hand-over-hand sign language is where the person who is Deafblind puts their hands over the signer's hands to feel the shape, movement and location of the signs.

Colin

In 1982 I first found out about self-advocacy. I’ve been doing this since then. I’m sick and tired of trying to fight for the rights of people living with disability and them still not getting it. There may be some rules where they are living. They’re not allowed to go to the pub. Not allowed out of their room or house. They don’t have the right to sit in their room and talk to their parents.

When I’m running training, for me, the most challenging thing is - How many people in that room know exactly what we’re talking about and are willing to take that first step? Are they too scared to ask? Too scared to understand?

We need the training and knowledge to be able to do things. And we need to have it in the time it takes for us to do things. If you need support, that’s fine. We all need somebody. But make sure you’re the person that’s doing the talking.

 

Margie

As part of my degree, I went overseas on exchange to Canada for a full academic year. I went for myself, but I also wanted to run away at the time. My best friend had passed away the year before, and that was so hard. During our friendship, we’d talked about my going overseas. I knew I had to do it.

My mum was more afraid of me going than I was. I was excited to go. But, when I got over there, I remember that first night, I got into my room and I sat on the bed, and I’m thinking, oh no, what have I done? Now I was scared. I thought to myself “oh noo, how could they let me do this on my own?! How dare they!? And then I opened up a suitcase and there was a note my friend had put in there without me knowing. It said if you are reading this note, you are over there, and that I was her most craziest buddy.

It made me feel so good.

Going overseas turned out to be the best thing I could have done. 8 months in another country on my own and having to make it work made me grow up. It also made me appreciate my mum a lot more. And that was so important, because I had 4 more years with her before she passed away. Aside from losing my best friend, losing mum was absolutely the hardest time in my life. I realised if I survived my mum passing, then anything else would be a piece of cake.

Alisha

My deafblindness was caused by a medical condition called neurofibromatosis. That causes brain tumours to grow on my hearing nerves. 

I was diagnosed at the age of 20, just over 20 years ago.

I was living in Indonesia. A friend noticed I would trip quite often, and then one day I was in Bali on the beach and there were rocks on the beach and I was struggling to walk on the rocks. The third thing was, I used to drive my motorbike to work and I noticed I had trouble driving my bike in a straight line. Those 3 things made me aware something wasn’t quite right.

I came back to Australia, and was diagnosed. With my condition, I knew that the tumours were on my hearing nerves, I knew about the hearing loss, but when I started losing my vision, that was totally unexpected.

Back in 2015, I got an email about a deafblind workshop from Able Australia.  At the time, I didn’t consider myself deafblind. I knew I had vision and hearing loss, but I could still hear and could still see. But I still went along to these workshops. Almost everything they said I could relate to. It was like, wow, someone knows me, someone understands me. They know what I am going through and they know my needs. So I got involved with Able Australia. Then I found out they were running a three day deafblind camp.  I thought wow three days of no cooking, no cleaning, no housework, I will go to that. So I signed up for this camp just to have a break. But when I got to the camp, there were all these other people, and their deafblindness was a lot more profound than mine. Some were completely deaf, some were completely blind, and some were completely deaf and completely blind.

At that time I was having a lot of difficulty adjusting to my deafblindness, I was thinking about what does the future hold. I had a lot of anxiety.

So I was just amazed watching all these people having a great time. I just sat there shocked. It was lifechanging for me. I realised that whatever happened to my vision and my hearing, I was going to be alright.

Stephen

ALONE NO MORE – A journey to happiness

There was a time, when I thought, it was done,

Family, children, love and fun.

I knew deep inside, I had so much to give,

To that special person, who would help make me live.

Alone for so long, rejected by my family,

A burden due to illness, just left to be.

With the support of carers and friends, I lived on,

My independence fought hard for and finally won.

Then a miracle happened, a dream came true,

Out of nowhere, out of the blue.

A reconnection with a long-lost love,

Like an angel that was sent by the heavens above.

Wow, its so amazing the way I now feel,

A love so strong, it just seems unreal.

She came back into my life, from the distant past,

And we have established a love, that is now destined to last.

With a house now refreshed with a family’s embrace,

Children and grandkids, I’ve won the race.

Now a busy life full of planning and schemes,

Holidays, birthdays, Christmases and dreams.

I have found my place in this woman’s arms,

Who cares so deeply and keeps me from harm.

Who accepts me as I am, with unconditional love,

I feel like I’m flying on the wings of a dove.

Now a sense of purpose and fulfilment mark my days,

I’m basking in the glorious heat of love's shining rays.

So comfortable and pleasured by what’s come about,

Eternally thankful, I can’t help but shout.

So, I now move forward and rejoice in each day,

I throw all my energy into life, without delay.

Cause I know life can be short and I’ve done my time,

Sitting and waiting at the back of the line.

‘Blind man rolling’, you may know that’s my handle,

And to my determination, no-one can hold up a candle.

A positive attitude has led me to success,

A keen love for life, I cannot rest.

I will continue, to fight for this life,

A brand-new family and a caring loving wife.

I will go the distance and enjoy the trip,

I will live to my fullest and just let it rip.

Partying hard and enjoying life’s pleasures,

Writing a new story and uncovering the treasures.

Those sad, dark days, now far behind,

As I lay in the cradle of this new family of mine.

Stephen and Tracy holding hands under the wedding altar surrounded by peopleStephen and Tracy at their wedding surround by a huge group of family and friends cheering with their hands waving in celebration

Gavin

I was brought up in the country, in the York Peninsula. I’m the son of a farmer. With my disability I would have gone broke living in the country, so I moved to Adelaide and I became a house painter. Then I worked for a firm making hydraulics. Someone asked me if I want to live in the country again. I live in Adelaide because I can get more support and services here, but my heart is in the country. Maybe when I win cross lotto I will go back to the country.

City people want things set up for them. They go to organised events. In the country we have got to make our own thing. We sit around a camp fire, and cook baked potatoes with the ashes, and talk into the night. It’s those simple things I miss.

My mother died 1st September 2011. Every year I go to the beach. I get Eucalyptus flowers and leaves and wattle flowers and leaves, and anything else I can. I create a big design in the sand. Maybe a love heart or a circle with Mum inside. Of course I know the waves just wash it away, but in my mind the ocean lifts it up and it floats as is to York Peninsula, and then it continues on, floating across the ocean. I do it to remember my mother and all mothers in heaven. 

flowers and leaves have been laid out in a circle design on the sand. The word

Jala

Hi, my name is Jala. I am 31 years old and I have lived with Cerebral Palsy all of my life.  Presently, I am a Board Director of JFA Purple Orange and JFM, as well as, being the Chair of the Trust Fund Committee. In these roles, I felt privileged to attend a recent event, which was hosted by Inhousing and Stretchy Tech. I thoroughly enjoyed being able to view a well-designed, spacious, open plan living style dwelling and see Stretchy Tech’s assistive technology in action. My visit gave me the chance to open/close blinds and turn lights on/off etc. via voice-command. Innovations like this offer independence and make everyday living easier, for those living with disability, like myself.

Whilst here, I was also honoured to have the opportunity to meet Australia’s current Prime Minister, the Honourable Scott Morrison. Through his enthusiasm for looking around and in his speech, the Prime Minister highlighted the importance of home and the difference assistive technology can make. On a personal note, I was impressed by the interest the Prime Minister showed, in both connecting with me as a person and in wanting to hear about my positive and negative experiences around disability-related issues. His warm manner and focused approach made me feel as though my feedback was insightful and worthwhile. Both meeting him and the conversations we shared, are memories that will stay with me for a long time.

Maria

I did not live independently until 59. I am 60. 
 
I used to live in [a large dormitory-style accommodation housing dozens of people]*. Some of the time, when we were meant to go out, some of the staff used to say, "You can't go there. You can't go here. You can't do that."
 
Then I went to [another large dormitory-style accommodation housing dozens of people]*. The same thing used to happen.
 
Now I'm living in my own apartment by myself. I prefer to live by myself where I am free to do the things that I want to do with my own time, instead of living with guys hanging around me, and staff hanging around. 
 
I'd rather be in my own environment by myself. I am happier. In [the institution]* it was all '[institution]* meals'. They put them in little plastic boxes and they were the same thing over and over and over. So when I went to my own place, I thought I'd like a change. I said I want to change from '[institution]* meals.' I have a choice and go and buy my own meals. I can sort it out myself. Other people can't run my life anymore. And that's the way I prefer it to be." 
 
__________

*(institution service name is withheld)

Yanni

I think that everyone should have some care for the environment and that comes down to my cultural being; my Aboriginal way of life is to care for country. So I will openly speak to whoever it is, that we need to care for this country. I don’t like the way trees are destructed, the birds are losing their habitat - they’re not singing, they’re crying now. It hurts my heart. I’ve cried for this land being destroyed many times. It’s not OK that people hide those emotions. We’re not meant to hide these emotions. It’s natural to feel these emotions. This comes down to the health of our entire society. The environment is limited. If we destroy it all, we’re all gone. It’s the future generations who are going to suffer. So we may not live to see the outcome of all these environmental movements but it’s ridiculously important that we start and we all play a part in it. Everybody should play a part in it. We’re all in this together. Every single person.

Libby

My name is Libby. My goals are to meet new people and become a mentor because I want to help people who might need a hand, who might be afraid. It's always been my passion, I like helping people.

I couldn't be a mentor a year ago, but now I know I can because I've been trained through a peer group (Our Voice). I've had someone say, "Can you be my mentor?" That made me feel real good inside. It's so awesome!

Our Voice helped me to grow. It's helped me do things that I didn't think I could do a year ago, like I didn't think I could stand up for myself. But coming to Our Voice, yes I can stand up for myself. And I can help people who can't stand up for themselves.

If I could talk to myself a year ago, I would say "Go for it Libby. You can do it."

Kathryn

I’m a young person in open employment. I’ve been in my first ever job as a Project Officer for a little under two years. When I first began I was nervous, shy and to be honest, I don’t even know how I was hired. Now, I’m respected in my workplace, I write assertive emails to our CEO, contribute to discussions and even had the opportunity to be project lead. I’m pretty proud of how much I’ve grown and I know that I’ve got the potential to be CEO someday.

My advice to any young person? Get involved, join that reference group, or committee, apply for that dream job even if you’re scared or feel inexperienced, you never know what great things could come out of it.

Ricky

What if people were afraid to say the words that defined you? I am quite frequently told that "bedridden" and "homebound" are not appropriate words to use, even though they are the very words I use to describe my own situation. Other people in similar situations to me use "bedbound" and "housebound", which are also appropriate. 

One disability activist told me that I should use the phrase "people unable to access supports needed to leave their beds", even though the problem is my disability itself, not my lack of supports, and their suggested phrase is so clunky nobody could ever remember it. Occupational therapists have told me that "bedridden" is a dehumanising phrase, though none could explain why when I asked. Even the person who asked me to write this text, definitely well intentioned, said "We do not have any one yet who is 'bedbound' for want of a better word" … They were also afraid the words were inappropriate. 

I understand where the problem comes from - people have learned that “wheelchair bound” is not appropriate language because it’s inaccurate and also implies wheelchairs are awful when actually wheelchairs are fantastic freedom machines (I wish I could still use mine, but I can't sit up enough or tolerate the vibration any more). Those things are true and important, of course, but don’t let it pour over to making you feel afraid of phrases like “homebound” and “bedridden”. There are two important reasons: firstly, there’s nothing enabling or freeing about being stuck at home or stuck in bed, the way a wheelchair can be enabling and freeing. Secondly, and most importantly, “homebound” and “bedridden” (or some folk prefer “housebound” or “bedbound”) – these are the ONLY words we have to describe our situation. You don’t get to take away the only words people have to describe themselves ever in any situation. You especially don’t take those words away when we are already a tiny minority within a minority who are mostly erased by society anyway. There are absolutely some words that used to be used in the disability field that we now try not to say. These words are different. These words are ours. These words are the only ones to describe our reality. These words are appropriate.

- Ricky Buchanan has written an extensive report on many of the problems homebound/bedridden people face in trying to access the medical system and what should be done to fix it. Read the report here

- Ricky has started started a @BedriddenAus twitter feed for issues relevant to #bedridden and #homebound Australians

Pierre

(Pierre used to live in a nursing home, but he wasn't happy there. With encouragement from friends, and some help from technology, Pierre left the nursing home and moved into his own home.)

I can control the tv, the computer, radio, my wheelchair, air conditioning, DVD player, both of my doors. I can play chess on my computer. I've been playing since 6 years old. I'm much better off in my own home than in a nursing home. I'm doing my own thing. Doing what I want to do.

Maria

Bring on the straw war. I'm Ready.

Maria

"NAIDOC week is good to get together. We all go into the city together and we meet the rest of our friends. They have a float that has all our colours on it. Red, black and gold. We have lunch and walk around and meet up with people we haven’t seen for a long time. And we get to make friends with other people. I’m happy we’re doing this because it’s not only the Aboriginal people that go but it’s the Aboriginals, the whites and everyone else. We all get to go talk about things. We’re not allowed to be excluded. We are allowed to put our voices out to be heard. Whether we’re disabled or not."

Ellen

When you have a disability people automatically project their expectations of what they think you can’t do onto you. It can be big things like going to India on my own, or little things like going to the shop, going to the gym, joining a yoga class. I had this experience where a yoga instructor did that to me. After class the instructor was like, “You did such a good job! Wow you are so amazing”. It wasn’t something that she was doing to anyone else. It didn’t feel nice or comfortable. When a person who doesn’t have a disability goes to the shop, no one claps their hands, but as soon as I go, people say, well done for getting out of bed. There is so much you have to push back against to establish your own independence.

Ian

"Our Voice is a team of people who get together to hear stories from other people who’ve got the same kind of disabilities. We’ve being going for 12 years. We don’t answer to anybody. That’s the best part about it. I’m chair of the committee. I make sure the meeting runs properly and make sure all the issues get done. Our Voice means to me, to help other people with the same kind of problems as I have. If you’ve got intellectual disability people don’t want to listen to you. To me, I’m like their mouth piece. A lot of people are scared to speak up. For so long, people teach us, when you’ve got a disability, you never have rights. Now we’ve got rights like anybody else has." - Ian

Terry

Cafe owners know me. You never forget me when you see me for the first time. I ask for a cup of coffee and a straw, they bring it to the table. Normally I have a simple velcro cuff on my arm which takes a fork. They place the fork in my cuff, and I am able to eat the meal independently. I'm able to drink my coffee independently. I place my credit card in my top pocket. They take the card out and swipe it on the machine. So I am able to go to the shops and have a meal and coffee by myself. It is something to do and it is my independence, which is very important for me. And to be quite honest I do like to be amongst people going through their daily lives, rather than sit at home on your own. I'd much rather be out, getting a bit of exercise and having a coffee. I like to sit there and watch the passing parade of life.

Jocelyn

Going to Bali, I knew would be an adventure! I had last been there around 12 years ago and knew it was not going to be very accessible in general, but had some outstanding places I wanted to visit regardless!

Choosing who I would take on my trip was a vital decision, as I knew whoever I took would need to be just as adventurous, if not more than me, and willing to support me in taking risks.

Not one place I have stayed at or visited yet has been wheelchair accessible, but that has not stopped me doing a single thing! Natural hot springs, rural village visits, hiking through rice fields, swings and so much more!

Some places have advertised being wheelchair accessible and confirmed it, only to arrive to find no ramps, rooms not big enough to allow a wheelchair in and circular doors! These have just added to the adventure in finding ways to overcome these challenges!!

I don’t mind being carried around where necessary, but prefer staying in my chair where possible, which means carrying me in my chair, and local people are always happy to lend a hand where needed!

Making the inaccessible accessible just requires a little thought and creativity! Where there is a will, there is definitely a way!

Simone

I'm trying really hard to get work at the moment. I'm a trained makeup artist. I'd love to get into perfumery and cosmetics. Beauty is within, and it is important to know that. But if you are into makeup, you can make someone's day if you sell someone the right amazing foundation or a perfume that a husband's going to bring his wife. That's really what I'd love to do. Later on I'd love to get into special effects makeup, but I've got some study to do to get there first.

Michèle

It's very hard work as a disabled writer doing plays. It takes me five years to get one staged. The difficulty lies in the solitary nature of being disabled, while playwriting relies on networking and collaboration and promotion. As a result of my circumstance, I live quite a solitary life, so it is hard for me to connect into the theatre making professional world. So there are a number of barriers that make theatre making particular difficult for me. But I persevere because I am incredibly passionate about theatre making.

[ Learn more about Michèle's work here:
https://access2arts.org.au/artist/michele-saint-yves/
https://australianplays.org/playwright/ASC-4214 ]

Michèle

I write, mostly for plays, but also a novel or two, and on occasion a short story or poem. One of the most exciting things for me as a writer is to capture how people speak. It is so telling about a person's nature, and where they are in themselves and their life course by the way in which they phrase things and the words that they use. I am constantly making notes, when I am on the bus, on the tram, sitting in a coffee store. I have heard the most amazing short little vignettes of people's dialogue, and a whole world comes through my ears, just by listening a few minutes. It's riveting.

Alisha

So I am losing my hearing, and I am pretty sure that one day I will lose it completely. So that is why I am learning Auslan. When I started, it was about having a method of communication, but through learning Auslan I've made many great friends, and I've met people in the Deaf community. Seeing how people in the Deaf community get along in their daily lives, it's made me realise being deaf is not really a barrier. And for me, that is so reassuring! It has taken a lot of that fear away of becoming deaf.

Brett

I got t-boned by a truck in 1983 and had my right leg amputated. Since then, I’ve never let my disability stop me from doing anything. My disability is an inconvenience - I just have to do things differently.

In 1990, I was number two in Australia for trick jet-skiing against able-bodied people.

I’ve done seven Adelaide to Port Lincoln yacht races.

I’ve worked in upholstery and even made my own motorbike seat. And yes, I still ride my bike. I have a disability but I still live my life.

Kaila

So I went to two private schools. The first private school I went to, my primary school, I didn't feel very included or understood. I don't think they'd ever even heard of what autism was before they had met me, before I got diagnosed. And I wish they talked to me and my parents more, instead of assuming what was best.

It was almost like, oh, you have a disability now. We are going to do these things that we think need to be done to someone with a disability. We're not going to talk to you or discuss what you need. You know? And I felt very different and not part of the community there.

My second school that I went to, St. Mary's College, from year six to year 12, I found was a lot more inclusive. They hadn't ever had another autistic student either, but they were more open to hear from me and my parents, and hear what we needed, and then go from there and work with us. And my grades went up in like the first two years that I moved, from like D's to A's. So yeah, definitely made a significant difference.

Because I was getting support, and in my old school I think they didn't think I was very smart, so they'd just give me simple work. While in the new school they kept challenging, and me realizing that I was smart. I just worked in a different way, and maybe things would take a bit longer. Or we'd have to go a different way around it, but I could do what everyone else could do. You know?

Hannah

Inclusion is everybody enjoying one big world.

Zac

‘When I was about 12 years old I had yet to learn how to ride a bike. It didn't really phase me. I had given up on it years earlier because it was all too hard for me to learn to balance. One day at school I got an invitation to a birthday party at one of my closest friend’s houses and I was so excited. As I read further down it said, 'bring along your bike and helmet and join the fun!'. I was crying, stressing and so frustrated but I couldn't tell my friend why. I went home that night and explained this all to my mum and dad. They said well if you want to do it you can learn. Meanwhile I'm screaming and yelling thinking how in the world am I going to learn to ride a bike by this weekend? But starting that very Monday night I padded myself up in motorbike gear and set off down the street with Mum and Dad taking in turns to chase me with the broom attached under my seat for balance. I was out there for 3 nights straight. After many stacks, a broken pedal and enough yelling to get the police called, I turned while riding along to find Mum wasn't even behind me and I had done the unthinkable and learnt to ride a bike!’

Jacky

"Life is too short… as I saw both parents leave this world before they had a chance to enjoy retirement. You shouldn't feel bad about retiring, so why did I feel guilty? It took me a long time to gain the courage to say I was going to retire. Why? Everyone kept asking me, “What are you going to do if you are not working?” As if you need to do "activities" all day every day. But then a good friend in conversation said ideally he would like to retire by the time he turns 55. And I was like "YES!" It was a lightbulb moment! If he can retire at 55, why can't I? Guess how old I am this year? As much as I’ve enjoyed my time here, I am here for a good time not necessarily a long time."

Jacky, quoted on the day she retired 28-3-2019. We will miss our friend and colleague, and her witty sense of humour around the office!

BEN

I was really not included at school. Even at primary school I got bullied. He threw a pen at my head and thought it was funny, but it was not. I was treated like a shadow to everybody. Nobody invited me to places. I had depression not going to places. I am in need of going to places with people. I hate it when people treat people like we are a shadow. Never do that. Never bully. Crazy and nice things is what you need to do. Caring for each other, it is just really really nice. It would be a much better world.

Jane

"I was an elected Councillor and I worked on the Campbelltown Council in South Australia from 2006 to 2010. We wanted to improve accessibility and inclusivity and represent members of the community who live with disability. I am passionate about standing up for the rights of kids with autism and people with disabilities and also about doing what I can to pursue the war on waste for the good of the environment. I want to show my children that it’s possible to be the decision makers and create the environment that they want to live in. I believe in the power of the human spirit to rise above adversity."

Ollie

"I was incredibly stoked to surf my first real waves. This marked 5 months from the day I received my first prosthetic leg and began the tedious process of learning how to walk again. Every single day I think about surfing, and with that comes a roller coaster of emotions and the constant self doubt that I’ll never be able to surf properly again. Losing my passion for surfing has been one of the hardest things that was stripped away from me. This session has sparked my passion for surfing once again and given me hope for the future." (Instagram: @olliedousset) | Photo by Mitch Clark (instagram: @clarkmatter)

Leeanne

I was not diagnosed as being Autistic until I was 18 years old. I went through the school not knowing and the school also did not know, which I think in some ways was good and some ways not so great as well. Sometimes I had difficultly understanding the intention of my teachers, and I'd be completely wrong. One time, we were in music class and one of the students answered the question with the word pig. And clearly that was the wrong answer, and all the students around me started laughing. I did not find it funny. But, because everyone around me was laughing, I was like, well the appropriate response here must be to laugh. I just started laughing because everyone else did. The teacher then singled me out in particular, and told me off for picking on the student, which I was really confused with. I was only laughing because everyone else was laughing. So from that moment on I just decided to never speak in that class. I thought the teacher was unfairly picking on me. But now that I have the diagnoses I wonder if I laughed differently, or something. But at the time, I didn't know. So I just became really quiet in that class from that point onwards. It was a good way of not getting into to trouble, if you just stay silent. I think teachers should look out for students doing that.

Madde

"During school, I thought it was pretty inclusive, however there were some areas that I thought were a bit segregated. For example, in high school there was not only a visual impairment unit, but there was another special ed classroom. Sometimes during lunch, that classroom would turn into a games room. So those with disability would tend to congregate together, and not so much interact with other students in the school.

Other students don't know how to interact with us as much as they could have. So the friendship group tends to be just people with disability.

In my opinion, inclusive education is not only providing the materials and the necessary support to help them get through their school work, but bridging the gap between the disability and non disability community socially within the school community."

Angus

"I attended the same mainstream school all the way through reception to year 12.

Basically when you start off at school that young, the general attitude was, "You walk funny, want to be friends?"

People noticed, but just got on with it. I've got fantastic friends from that school. There is a group of eight of us that still catch up after 20 years.

I was bullied by one person, but it was quite odd in a sense, because everyone who knew me approached that guy and said, "If you keep going the way you are going, we are going to sort you out."

I think the earlier that kids get exposed to disability it normalises it. There is none of the rubbish that you see with adults."

Natalie (2/2)

"People tell me that I am an inspiration, but sometimes they do it not in an 'inspiration porn' way. Sometimes they do it because of my achievements, and that’s well deserved. I’ve done a lot of cool stuff in my career. I’ve built a cool house, there have been a lot of things that if one of my friends had done I’d say, “That is really inspirational”. It’s not a dirty word. It’s just often misused in my context. There are people that team up the idea of me living an ordinary life with inspiration. That’s not the best."

Natalie won Australian Young Lawyer of the Year and SA Young Lawyer of the Year in 2016.

Natalie (1/2)

"If you are not working towards having a genuinely diverse workplace, then you are working towards yourself going out of business. Diversity will bring great thinking, it will bring innovation, it will bring a stronger fabric within your organisation, and disability is just one part of that. If you are not employing women, young people and people of colour, then you are not putting together a strong work place, leading to your gradual demise. It is probably best you don't employ people with disability then, because they will be out of a job."

Shannon

"We are not houses, rocks or roads. We are humans. We want to be listened to."

Maria

"What does it mean to be Italian to me?
It means an extremely strong family connection.
It means never to feel alone.
We all love and care about each other, even if it sounds like we are arguing when we speak because we are so loud.
And food, you will never go hungry if your Italian.
You know when you’re in a true Italian house because you always get asked “How are you?” the moment you walk in the door, and you will be offered a coffee and food.
It means so much more than all of this, only I’m not sure how to describe it. I’m Australian born. I was brought up in a world with no Italians or Italian culture until I finished school at Regency Park Crippled Children’s School, however the Italian culture was never broken. I suppose you can take the child away from the family but you can’t take the family away from the child."

Cheralyn

"I went to Sydney for New Years Eve once, and my wheelchair decides to get a flat tire. I have to find someone who can fix my tire so I can keep moving. My support worker is panicking.

I'm like, 'Dude, there will be someone who can help us, we just got to find the right person.'

Rather than sitting there crumbling, you just got to say, right, what are we going to do.

So I ask the hotel concierge to speak to the maintenance department.

The concierge goes, 'Why?'.
'Because I got a flat tire and I can't move,' I say.
'Well, that's a bit of a problem,' he says.
'Yep.'

So they put me in this office chair, tip my chair over, fix my tire, and flip it back over again.
Sometimes, you've got to just open your mouth and say, 'I need help.'"

Derris

"Don't assume anything. Ask me."

Nicolette

"For the past 14 years, I have been lucky enough to have the same wonderful support worker. So when I was told that she was leaving, I was a mess and very anxious. I was never a person to like change. But, as the time has gone by I have realised this change was a good thing for me. I now have gained a variety of new support workers that are closer to my age. This is a new positive experience for me, as they are more keen to get out of the house with me and help me to experience the world. I have gained more independence. My new workers encourage me to do more things out of my comfort zone, which makes me less scared."

Ellen

"I would love to be part of a peer group for people who live with disability focused on adventure, thrill seeking and risk taking.

Often in disability service programs there are all these occupational health and safety issues that prevent support workers from assisting you to go on adventures. I think a peer group could really help encourage this, and it's important because we grow when we get out of our comfort zone.

For example, I went to India when I was 19 on my own. Everyone said I was crazy. But I found it was the best way to develop confidence. I could set up my own boundaries rather than other people setting them for me."

Christine

"I'm studying a graduate certificate in disability studies and plan to do a research masters focused on my passion, sex and health. I'm specifically interested in the prevention of sexual diseases for people who live with disability. They are often at greater risk because the 'professionals', the academics, GPs, nurses, midwifes etc, never assume that people with disability have sex. So sex for people with disability is a Pandora's box syndrome. It's never talked about."

Ian

“If it wasn’t for us, none of you would have jobs.”

Tony

Most people are surprised when my wife Jane says I was the main one who designed where everything was going to go in this place. I have lots of things in here that I've never seen, never will see. But, I have a sense. It is almost like I could be a blind interior designer. It's something I enjoy.

Mikaila

"The hardest part about having severe Juvenile Arthritis is that people don’t realise how seriously damaged my joints are or how sick I can become because of my compromised immune system. For more than 10 years I have been regularly pumped full of the latest drugs every month via an intravenous infusion. They make me feel quite sick but they also help to control the joint swelling and pain. It has been a bit of a logistical nightmare to be chained to a drip for several hours every month and then feel quite unwell for a bit, especially when my daughter was a baby. And it is often hard for people to understand that I need such intense drug therapy for a condition that sounds so common. But just recently I had my last infusion (hopefully forever) because there is a new drug available that I can take as a tablet every day instead. This will be so much easier, I am so lucky!"

Dara

"Sunday October 2nd 2016 was the start of everything. So much trust was gambled on that night.
Let me back up, earlier that year I met a guy on Tinder. He was using Tinder Plus to allow him to match to places outside his hometown. He was living in Spain, but wanted to befriend Adelaide people as he would be coming down here later in the year.
We chatted for a while but eventually stopped talking. I did not mind because I hadn't met him yet. But, out of nowhere a few months later, he messaged me and asked if I was keen to meet soon.
He added me to a Facebook chat with some of his friends, also in Adelaide but from France, Italy, Spain, that side of the world. It made me feel like a star because everyone was interested in me and was keen to meet me. I provided them with information about my disability.
Anyway, we decided to meet at a bar. I am not sure why I was more anxious meeting this group of friends than the first time I met a solo person on Tinder. I was filled with mixed feelings and had a spasm. In the past when I've had a spasm, people have said I should have a paid worker with me to take care of my spasms, but these people just let it pass. The fact that my spasm didn't scare them away made me extremely happy and comfortable with them. It would be great if everyone reacted like that.
Putting myself out there on October 2nd 2016 taught me you must go for it and seize the moments. We all became close friends, catching up regularly. Our friendship opened me up to new worlds. It proved I don't need to have paid staff with me when I hang out with trusted friends.
After two years, they left Australia. I love them a lot and will treasure our time for life. They were and are the ultimate international crew for me. I must make it my ultimate goal to visit their home countries."

Nick

"I seek out opportunities to be nervous. Being nervous shows me that I am on the right track of what I am supposed to be doing. It means I care and am passionate about getting it right. If you are not nervous, maybe it means you don't care enough to give it your all."

Trevor

"I've been involved in disability advocacy for a very long time. I remember when I was 18 I was writing letters to the editor and the media.

My mum said, 'Careful, we don't want a shit stirrer in the family.'

I said, 'Well, sorry, but you've got one.' "

Jill

"I was in hospital a while back. It was written everywhere that I was allergic to this certain medication. They gave it to me anyway. I had an anaphylactic shock and ended up in ICU for five days. I nearly died. After that incident, I now question everything. Why is this tablet green now? It used to be blue. Why do you want to stick that needle in me? I'll find out if it is absolutely necessary. I'm not going to be a guinea pig. I learned to speak up for myself."

Tim

"I would say everyone who lives in a country where they could easily get killed by government troops, rebel troops or by bombs have the right to flee to a safe haven. It's what the western world signed on for in 1951 when the UN refugee convention was drawn up. I strongly believe in the UN refugee convention. Try to imagine our country is like Syria or Libya and we need to flee to a safe country, and it's our children filmed making the long harsh journey.

Having a disability, I feel like I am part of a marginalised community, so I believe in standing up for other marginalised groups."

Kate

"There are a lot of shops that haven't thought of wheelchair access. Even if you suggest to them you'd love to come into their shop, they won't do it because they think it's too expensive. But, I'd rather give positive examples than negative ones. I went to Kintaro Sushi Train on The Parade and said I'd love to come into your shop. At first they got a couple planks of wood to get me into the shop, and now they've gone to the expense of getting a proper portable ramp. Because they did that, I make sure that I go there quite a bit. In fact I went in there yesterday."

Jane

"When my nieces were born, I decided I was going to set a good example for them. I wanted them to grow up thinking that disability was okay. Now they are four years old. They don't see disability different in any way. They've grown up seeing me as me. I hope when they go to school and through their whole life, that they will keep that with them."

Stephen

"I haven't got my eyes.

I haven't got my legs.

But I've got my ears and I've got my drinking arm.

I've got some partying to do!"