Episode 26: Emergency Preparedness and Planning for People with Disabilities

This is Have The Nerve Shorts - the short episodes between the long ones where we talk about things From The Internet, you can Get To Know Your Body and there might be even Something To Think About.

On this episode of Have The Nerve, Forrest Campbell comes on to talk about his observations about the lack of peer support for his wife when he sustained his spinal cord injury in 2015. He talks about how the difficulty of transitioning to a new life wasn't just felt for him, but became very real for her as well, and when they looked for genuine support it was sorely lacking.

According to Carers Australia there are currently 2.65 million unpaid carers in Australia who provide 2.2 billion hours of unpaid care per year.

Note: In the episode Forrest mentions that his wife is working on a peer support website for carers to access. We will update you on the progress.

Information that could help you:

Carers Gateway Australia: https://www.carergateway.gov.au/

SCIA's Wellness Recovery Action Plan (WRAP) for family members and caregivers: https://scia.org.au/wellness-recovery-action-plan/

Spinal Cord Injuries Australia is a for-purpose organisation that supports people with a spinal cord injury and other neurological conditions. For more information about our supports and services, visit our Resource Hub at https://bit.ly/ResourceHubSCIA.

This is Have The Nerve Shorts - the short episodes between the long ones where we talk about things From The Internet, you can Get To Know Your Body and there might be even Something To Think About.

In this episode Physiotherapist Colbey Van Leeuwen talks about what shoulder health means and why it's so important you know the right way to take care of them.

NeuroMoves is a specialised exercise service for people with neurological conditions and physical disabilities. Our team of Exercise Physiologists and Physiotherapists want to increase your independence, health and wellbeing and help you work towards your goals, no matter how big or small.

If you want more information visit https://scia.org.au/neuromoves-exercise/.

Spinal Cord Injuries Australia is a for-purpose organisation that supports people with a spinal cord injury and other neurological conditions. For more information about our supports and services, visit our Resource Hub at https://bit.ly/ResourceHubSCIA.

It's 2024 - A New Year, A New Start.

This is Have The Nerve Shorts - the short episodes between the long ones where we talk about things From The Internet, you can Get To Know Your Body and there might be even Something To Think About.

In this episode you are listening to Laura Burling, Jade Williams and Susan Wood answer the question: WIBTA for saying my girlfriend and I aren’t going to anime expo if she has to leave Monday and I have to leave Sunday?

As we read more into the predicament, we quickly find out that OP is trying to prevent his girlfriend from attending an out-of-state convention without him because of his fears and anxieties around her disability.

You can read the whole Reddit thread here: https://www.reddit.com/r/AmItheAsshole/comments/14133oh/wibta_for_saying_my_gf_and_i_arent_going_to_anime/

Let us know what you think! Is he the AH?

Credits
This episode has been written, produced and edited by Susan Wood. Logo art by Cobie Ann Moore.

Spinal Cord Injuries Australia is a for-purpose organisation that supports people with a spinal cord injury and other neurological conditions. For more information about our supports and services, visit our Resource Hub at https://bit.ly/ResourceHubSCIA.

We’ve spoken about access to large scale events such as music festivals, concerts, Susan may have mentioned something about the weird inclusion issue in running events, but what about smaller scale events like attending a play, or hang on – what if you are a playwright with a disability and you want to stage a production, what if you are a stage actor with a disability and want to perform? Do you get a fair chance?

Jacqueline Tooley is the former Accessibility Manager of the Darlinghurst Theatre Company in Sydney, a queer disabled emerging playwright and currently living in the UK studying her Masters in Dramagurty and Writing for Performance at Goldsmith's College at the University of London. 

They talk about everything from basic access for someone viewing a play to access on the stage to her thoughts on how people in the LGBTQI+ community perceive people with disabilities, and disability itself. We cover a lot, so strap in!

Information in this episode:

Darlinghurst Theatre Company: https://www.darlinghursttheatre.com/

Ali Stroker - Actress, author singer: https://en.wikipedia.org/wiki/Ali_Stroker

RUH Global Impact - Disability influences a trillion dollars in disposable income?: https://www.ruhglobal.com/disability-influences-trillion-dollars-david-perez/

The Dan Daws Show: https://dandawcreative.com/productions/the-dan-daw-show/

Auslan with David (Instagram):  https://www.instagram.com/auslanwithdavid/

Credits
This episode has been written, produced and edited by Susan Wood. Logo art by Cobie Ann Moore.

Spinal Cord Injuries Australia is a for-purpose organisation that supports people with a spinal cord injury and other neurological conditions. For more information about our supports and services, visit our Resource Hub at https://bit.ly/ResourceHubSCIA.

Trigger warning, this episode discusses sexual and physical abuse of people with disabilities and listen discretion is advised.

In this episode of Have the Nerve Susan speaks to Jake Briggs, long time disability advocate, Managing Director of CultureConnex and host of the podcast Keep Rolling with Jake Briggs. 

They talk about his career as an advocate, his work in service provision, his work supporting First Nations People during the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability, The Voice Referendum and the ripple affect that misinformation and lack of education has had for people with disabilities living in metropolitan, regional, rural and remote areas across Australia.

Information in this episode:

CultureConnex: https://cultureconnex.com.au/

Keep Rolling with Jake Briggs: https://linktr.ee/street_rolling_cheetah

Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability: https://disability.royalcommission.gov.au/

First Peoples Disability Network: https://fpdn.org.au/

National Disability Insurance Scheme (NDIS): https://www.ndis.gov.au/

The biggest takeaways from the Disability Royal Commission after four years of hearings (Australian Broadcasting Corporation): https://www.abc.net.au/news/2023-05-13/disability-royal-commission-biggest-stories/102326830

If you, or anyone you know, needs to speak to someone:

Lifeline  13 11 14

13 YARN 13 92 76

Kids Helpline 1800 551 800

MensLine Australia 1300 789 978

Suicide Call Back Service  1300 659 467

Beyond Blue 1300 22 46 36

Headspace 1800 650 890

QLife 1800 184 527

Credits
This episode has been written, produced and edited by Susan Wood. Logo art by Cobie Ann Moore.

Spinal Cord Injuries Australia is a for-purpose organisation that supports people with a spinal cord injury and other neurological conditions. For more information about our supports and services, visit our Resource Hub at https://bit.ly/ResourceHubSCIA.

How many times a year do you think the average person with a disability, requiring products like these would need to go to the bathroom? 

How much does it cost?

What does someone do when they can’t afford basic medical necessities to go to the bathroom?

AND what happens if you are an immigrant who needs continence products and you don’t qualify for any funding at all?

Edwina Spooner from Coloplast is back and we talk about the very sobering realities for a lot of people who don’t have access to a lot of funding or may not have any funding at all and the ripple effect it creates.

Information in this episode:

Coloplast: https://products.coloplast.com.au/

Continence Aids Payment Scheme (CAPS): https://www.health.gov.au/our-work/continence-aids-payment-scheme-caps

National Disability Insurance Scheme (NDIS): https://www.ndis.gov.au/

My Aged Care: https://www.myagedcare.gov.au/

Continence Foundation of Australia: https://www.continence.org.au/

Parliament of Australia - Find your local Member: https://www.aph.gov.au/senators_and_members/members

Have The Nerve Episode Three - What you should know about SCI and bladder management: https://scia.org.au/resource-hub/what-you-should-know-about-sci-and-bladder-management/

Have The Nerve Episode Four - What you should know about SCI and bowel management: https://scia.org.au/resource-hub/sci-and-bowel-management/

Credits
This episode has been written, produced and edited by Susan Wood. Logo art by Cobie Ann Moore.

Spinal Cord Injuries Australia is a for-purpose organisation that supports people with a spinal cord injury and other neurological conditions. For more information about our supports and services, visit our Resource Hub at https://bit.ly/ResourceHubSCIA.

It's getting into the warmer seasons now and when the weather gets warmer people like to go out more.

What does that have to do with this episode?

Senior Community Services Coordinator Laura Burling and Representative Advocate Jade Williams talk with Susan about what a Companion Card is, why they are important and they talk about why more people should understand the meticulous planning behind going to even the most simple of social situations for most people with disabilities.

Information in this episode:

National Companion Card (Australia wide): https://www.dss.gov.au/our-responsibilities/disability-and-carers/program-services/for-people-with-disability/national-companion-card

SCIA Representative Advocacy: https://scia.org.au/advocacy-policy/

SCIA Support Coordination: https://scia.org.au/ndis-support-coordination/

Credits
This episode has been written, produced and edited by Susan Wood. Logo art by Cobie Ann Moore.

Spinal Cord Injuries Australia is a for-purpose organisation that supports people with a spinal cord injury and other neurological conditions. For more information about our supports and services, visit our Resource Hub at https://bit.ly/ResourceHubSCIA.

In this episode of Have the Nerve Susan speaks to Geraldine Watts. disability advocate. After a series of accidents that affected her spine, in 2016 her intervertebral disc disintegrated and she lost mobility, function and sensation. It was only in 2020 where she was formerly diagnosed with a spinal cord injury that set her off to find and absorb as much information about her disability as possible.

We talk about her journey with mental health and mental wellbeing, the barriers of accessing health services, and even general information living in rural and regional Australia, we talk about courage and how she’s turned from feeling shy to an outspoken advocate for people with disabilities in her now regional community.

Information in this episode:

SCIA's Resilience Program -  Engage: https://scia.org.au/engage/

SCIA's Resilience Program -   Wellness Recovery Action Plan: https://scia.org.au/wrap/

SCIA's Resilience Programs Engage and WRAP is for people with disabilities, their family and caregivers:  Register your interest here

SCIA's Representative Advocacy: https://scia.org.au/advocacy-policy/

Our Represtentative Advocacy Team is located in Sydney, Illawarra and Hunter regions of New South Wales. They hold Online Network Forums, face-to-face advocacy catch ups and advocacy education workshops. Click here to register.

Credits
This episode has been written, produced and edited by Susan Wood. Logo art by Cobie Ann Moore.

Spinal Cord Injuries Australia is a for-purpose organisation that supports people with a spinal cord injury and other neurological conditions. For more information about our supports and services, visit our Resource Hub at https://bit.ly/ResourceHubSCIA.

Sydney WorldPride 2023 didn’t just happen in two weeks between February to March, it’s the gift that keeps on giving and Susan will keep giving those gifts.

Let's cast our minds back, hit rewind, do some reminiscing and hear performances and interviews of the artists that made up Ground Zero at Brand X in Darlinghurst, New South Wales.

Ground Zero was a performing arts creative development and performance program presented as part of The Flying Nun by Brand X and Sydney WorldPride 2023.

Ground Zero was supported by the Wales Family Foundation and audience donations.

Audio Recorded and Mixed by Douglas Walker. Performances in this episode have been by permission of each artist, and are not played in full, except for Christopher Bryant's 'New Balance'.

If you would like to enquire about the full recordings please contact Brand X at info@brandx.org.au.

Information in this episode:

Brand X: https://www.brandx.org.au/

Ground Zero Artist Announcement (Brand X): https://www.brandx.org.au/news/ground-zero-artist-annoucement

Episode 24 - Voices from Sydney Mardi Gras 2023 #SydneyWorldPride: https://scia.org.au/resource-hub/voices-from-sydney-mardi-gras-202-ep24/

Artists in order of Ground Zero performance appearance:

‘Spoons’
Created and performed by Saskia Ellis
Composed by WYTCHINGS (aka Jenny Trinh)

‘No Romo’
Created and performed by Artemis Muñoz
With support from Erin Neill

‘New Balance’
Created and performed by Christopher Bryant
Director/Dramaturgy by Emma Palackic
Composed by Romy Seven Fox

‘Coconut Baby’
Created and performed by Sarah Carroll 

‘Cupcake’
Created and performed by Robyn Reynolds

Artist Links

Creative Director - Dan Graham: https://dangraham.com.au/

Saskia Ellis - Sydney Dance Company Article: https://www.sydneydancecompany.com/discover/the-2020-pre-professional-year-dancers-reflect-on-their-first-term/

Artemis Munoz: https://www.artemismunoz.com/

Christopher Bryant: http://www.christopher-bryant.com/

Sarah Carroll: https://www.instagram.com/_sarahleigh/

Robyn Reynolds (MC): https://www.robynreynoldscomedy.com/

Credits

This episode has been written, produced and edited by Susan Wood. Logo art by Cobie Ann Moore.

Spinal Cord Injuries Australia is a for-purpose organisation that supports people with a spinal cord injury and other neurological conditions. For more information about our supports and services, visit our Resource Hub at https://bit.ly/ResourceHubSCIA.

According to the Department of Foreign Affairs and Trade, the Asia-Pacific region is the most disaster prone region in the world. 

Australia has a long history with heatwaves, bushfires, drought, flood and tropical cyclones and we’re going from La Nina to El Nino, meaning, potentially a repeat of the 2019 – 2020 bushfires that saw the whole country on fire.

In this episode, Susan talks to Michelle Villeneuve, Associate Professor of Occupational Therapy and Deputy Director at the Centre for Disability Research and Policy at University of Sydney about this emerging interest, how COVID-19  came in and changed everything.

Information in this episode:

Michelle Villenueve - University of Sydney, Faculty of Medicine and Health: https://www.sydney.edu.au/medicine-health/about/our-people/academic-staff/michelle-villeneuve.html

Collaborating 4 Inclusion: https://collaborating4inclusion.org/

Person-Centred Emergency Preparedness (P-CEP) Resource Package: https://collaborating4inclusion.org/disability-inclusive-disaster-risk-reduction/p-cep-resource-package/

Person-Centred Emergency Preparedness (P-CEP) Workbook: https://collaborating4inclusion.org/wp-content/uploads/2020/08/2020-08-19-Person-Centred-Emergency-Preparedness-P-CEP-WORKBOOK_FINAL.pdf

Disability and Australia’s Disability Strategy 2021–2031 - Australian Department of Social Services: https://www.dss.gov.au/disability-and-australias-disability-strategy-2021-2031

Department of Foreign Affairs and Trade - Disaster Risk Reduction and Resilience: https://www.dfat.gov.au/development/topics/development-issues/building-resilience/drr/disaster-risk-reduction-and-resilience

United Nations Office for Disaster Risk Reduction: https://www.undrr.org/disability-inclusion-disaster-risk-reduction

Australian Human Rights Commission - United Nations Convention on the Rights of Persons with Disabilities (UNCRPD): https://humanrights.gov.au/our-work/disability-rights/united-nations-convention-rights-persons-disabilities-uncrpd

Credits
This episode has been written, produced and edited by Susan Wood. Logo art by Cobie Ann Moore.

Spinal Cord Injuries Australia is a for-purpose organisation that supports people with a spinal cord injury and other neurological conditions. For more information about our supports and services, visit our Resource Hub at https://bit.ly/ResourceHubSCIA.