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Travellers with disability often face discrimination. What should change and how to complain

<p><em><a href="https://theconversation.com/profiles/kelsey-chapman-1345505">Kelsey Chapman</a>, <a href="https://theconversation.com/institutions/griffith-university-828">Griffith University</a>; <a href="https://theconversation.com/profiles/elizabeth-kendall-210342">Elizabeth Kendall</a>, <a href="https://theconversation.com/institutions/griffith-university-828">Griffith University</a>, and <a href="https://theconversation.com/profiles/lisa-stafford-1505408">Lisa Stafford</a>, <a href="https://theconversation.com/institutions/griffith-university-828">Griffith University</a></em></p> <p>Australia’s former disability discrimination commissioner, Graeme Innes, has settled his dispute <a href="https://www.abc.net.au/news/2024-01-23/adelaide-airport-graeme-innes-disability-discrimination-dispute/103375068">with Adelaide Airport</a>. His complaint to the Human Rights Commission was lodged after being denied access to a body scanner with his assistance dog in <a href="https://graemeinnes.com/2022/05/17/airport-discrimination-dash-i-am-angry-as-hell-and-im-not-going-to-take-it-anymore/">May 2022</a>.</p> <p>Unfortunately, Innes’ experience will resonate widely with Australia’s <a href="https://www.aihw.gov.au/reports/disability/people-with-disability-in-australia/contents/people-with-disability/prevalence-of-disability">4.4 million people with disability</a>.</p> <p>“People with disability know how challenging air travel can be, and that experience needs to be more inclusive,” said Innes, who was disability discrimination commissioner for nine years and is on the board of the <a href="https://www.ndis.gov.au/about-us/governance/board/board-profiles">National Disability Insurance Agency</a>.</p> <p>Experiences like Innes’ have been widely <a href="https://www.theguardian.com/australia-news/2023/feb/03/australias-airlines-and-airports-urged-to-improve-treatment-of-travellers-with-disabilities">reported</a> and have happened to <a href="https://www.smh.com.au/national/graeme-innes-fights-to-change-how-disabled-people-are-treated-when-they-fly-20220516-p5alqs.html">prominent Australians with disability</a>. The everyday experience of air travel is likely even more shocking. Change is happening, but it is moving slowly.</p> <h2>Airport and airline ableism</h2> <p>The Human Rights Commission received more than <a href="https://www.infrastructure.gov.au/sites/default/files/documents/awptor2023-submission-a16-australian-human-rights-commission.pdf">100 disability discrimination complaints against airlines</a> in the six years to 2022, including the period in which COVID restrictions saw air travel severely limited.</p> <p>Issues included:</p> <ul> <li>assistance animal refusals</li> <li>inaccessible facilities</li> <li>inaccessible ticketing arrangements for people with vision impairments</li> <li>taxis and rideshare providers not turning up, long delays or refusing passengers with disability aids and/or assistance animals.</li> </ul> <p>These issues highlight a system underpinned by unchallenged <a href="https://theconversation.com/ableism-and-disablism-how-to-spot-them-and-how-we-can-all-do-better-204541">ableism</a> – discrimination that favours people without disability.</p> <h2>Freedom of movement</h2> <p>An important right under the <a href="https://www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities/article-20-personal-mobility.html">United Nations Convention on the Rights of Persons with Disabilities</a> is freedom of movement. This right seeks to enable all people to be <a href="https://www.tandfonline.com/doi/full/10.1080/09687599.2023.2203307">included in society in ways they self-determine</a>.</p> <p>Ableism in air travel is a fundamental denial of independence and freedom of movement. Discrimination can be even more blatant and offensive. People have been removed from flights or denied boarding because there are <a href="https://www.infrastructure.gov.au/sites/default/files/documents/awptor2023-submission-a16-australian-human-rights-commission.pdf">limits on the number of wheelchair users who can access an aircraft</a> or because they require additional support to access facilities.</p> <p>People with disability report the removal of, or damage to, <a href="https://www.abc.net.au/news/2023-10-31/virgin-airline-wheelchair-damage-broken-compensation/103010472">personal mobility equipment</a>, and lack of suitable equipment. In the most severe cases, people have been <a href="https://www.9news.com.au/national/australians-with-disabilities-suffer-dehumanising-treatment-at-airports-travel-news/b7de6139-258a-4e86-a615-031eb0e89074">injured during travel</a> or left stranded in dangerous circumstances.</p> <h2>Inconsistency can fuel ableism</h2> <p>Inconsistent policies and practices significantly impact travellers with disability. This is made worse by the fact that individual airlines and airports are encouraged by government to develop their own <a href="https://www.infrastructure.gov.au/infrastructure-transport-vehicles/aviation/aviation-access-forum-aaf/dafp">Disability Access Facilitation Plans</a>.</p> <p>So, it is not surprising when news reports highlight instances of assistance dogs being denied travel <a href="https://www.abc.net.au/news/2023-12-15/jetstar-assistance-dog-policy-criticised/103221894">domestically</a> and <a href="https://www.nytimes.com/2023/08/22/travel/jetblue-service-animal-dot-open-form.html">internationally</a>, even when they’ve <a href="https://www.abc.net.au/news/2023-12-20/qantas-sued-over-assistance-dog/103223736">previously been approved</a> by other airlines.</p> <p>Lack of consistency, negative attitudes, stereotypes and prejudices in the air travel industry have resulted in <a href="https://www.independent.co.uk/travel/singapore-airlines-disability-discrimination-amputee-b2301471.html">reportedly aggressive eviction of passengers</a> with disability from exit rows. Others report being told to “<a href="https://qdn.org.au/wp-content/uploads/2023/06/Voice-of-Queenslanders-with-Disability-report.pdf">catheterise</a>” (to insert a tube through the urethra to the bladder) to avoid needing toilet facilities on an overseas flight. Many people with disability experience situations like Innes’ where they are subjected to alternative, sometimes undignified, processes.</p> <p>Ongoing experiences of ableism not only deny people with disability their rights to travel but can also <a href="https://www.tandfonline.com/doi/full/10.1080/09687599.2023.2203307">damage their dignity</a>. Anticipation of discrimination can increase anxiety and stress for travellers with disability or prevent them travelling altogether.</p> <h2>Slow reform</h2> <p>These stories and many others point to the need for urgent reform.</p> <p>Stories shared by more than 60 participants in a special Disability Royal Commission session prompted its chair to <a href="https://disability.royalcommission.gov.au/news-and-media/media-releases/chair-writes-ceos-airlines-and-airports#:%7E:text=The%20Chair%20of%20the%20Disability,their%20experiences%20with%20air%20travel">write directly to the CEOs</a> of Australian airlines and airports, urging them to work on solutions.<br />The review and modernisation of the <a href="https://www.infrastructure.gov.au/infrastructure-transport-vehicles/transport-accessibility/transport-disability-standards">2002 Disability Standards for Accessible Public Transport</a> along with the upcoming release of the Australian government’s <a href="https://www.infrastructure.gov.au/infrastructure-transport-vehicles/aviation/aviation-white-paper">Aviation White Paper</a> could be key mechanisms to address systemic discrimination. But only if key recommendations from disability organisations and advocacy centres are adopted. They include:</p> <ol> <li> <p><a href="https://www.infrastructure.gov.au/sites/default/files/documents/agp2023-submission-c170-australian-federation-of-disability-organisations-and-national-inclusive-transport-advocacy-network.pdf">specific standards</a> for air travel co-designed with people with disability and representative organisations. <a href="https://www.engineersaustralia.org.au/sites/default/files/2022-04/Universal-Design-for-Transport-TAs-discussion-paper-20220421.pdf">Universal design</a> aims to make products and environments usable by all people, without adaptation. It can play an important role in overcoming the systemic barriers in infrastructure and service design to create more seamless and inclusive transport and air travel experiences</p> </li> <li> <p><a href="https://piac.asn.au/wp-content/uploads/2023/12/PIAC-Submission-to-Aviation-Green-Paper.pdf">reportable and enforceable standards</a> and independent oversight, such as funding the Human Rights Commission to oversee compliance.</p> </li> </ol> <h2>Complaints are just one route</h2> <p>The exclusion of people with disability from seamless airline travel is a violation of their fundamental right to freedom of movement.</p> <p>Decades of travel horror stories in the media, continuing legislative reviews and national enquiries should bring change. Everyone should be able to make journeys with dignity and autonomy. People with disability deserve the same travel privileges as non-disabled Australians.</p> <p>Governments and the aviation industry will need to collaborate to implement comprehensive accessibility measures, ranging from wheelchair-friendly facilities to trained staff capable of providing appropriate assistance. Embracing inclusivity in air travel not only aligns with the principles of equity but also contributes to a society that celebrates diversity.</p> <p>For now, there are a number of ways to raise complaints, including with the individual airline or with the <a href="https://humanrights.gov.au/complaints/make-complaint">Human Rights Commission</a>. Raising complaints with the Human Rights Commission can be completed by anyone who experiences discrimination. Legal support and advice may also be sought from some state-based legal aid organisations.</p> <p>While complaints are one mechanism for change, more proactive methods for change include the disability royal commission’s recommendation for the design and implementation of a <a href="https://teamdsc.com.au/resources/inside-the-disability-royal-commission-s-final-report">Disability Rights Act</a>, which would see human rights enshrined in legislation and facilitate barrier-free travel.</p> <p><a href="https://theconversation.com/profiles/kelsey-chapman-1345505"><em>Kelsey Chapman</em></a><em>, Research Fellow Dignity Project, <a href="https://theconversation.com/institutions/griffith-university-828">Griffith University</a>; <a href="https://theconversation.com/profiles/elizabeth-kendall-210342">Elizabeth Kendall</a>, Professor, Director, Griffith Inclusive Futures, Griffith University, <a href="https://theconversation.com/institutions/griffith-university-828">Griffith University</a>, and <a href="https://theconversation.com/profiles/lisa-stafford-1505408">Lisa Stafford</a>, Adjunct Senior Research Fellow, Inclusive Futures Centre, <a href="https://theconversation.com/institutions/griffith-university-828">Griffith University</a></em></p> <p><em>Image credits: Shutterstock</em></p> <p><em>This article is republished from <a href="https://theconversation.com">The Conversation</a> under a Creative Commons license. Read the <a href="https://theconversation.com/travellers-with-disability-often-face-discrimination-what-should-change-and-how-to-complain-221740">original article</a>.</em></p>

Travel Trouble

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What does a building need to call itself ‘accessible’ – and is that enough?

<p><a href="https://theconversation.com/profiles/ilan-wiesel-303040">Ilan W<em>iesel</em></a><em>, <a href="https://theconversation.com/institutions/the-university-of-melbourne-722">The University of Melbourne</a> and <a href="https://theconversation.com/profiles/rebecca-bentley-173502">Rebecca Bentley</a>, <a href="https://theconversation.com/institutions/the-university-of-melbourne-722">The University of Melbourne</a></em></p> <p>The <a href="https://www.ndisreview.gov.au/resources/reports/working-together-deliver-ndis">National Disability Insurance Scheme (NDIS) review</a> and the disability royal commission’s <a href="https://disability.royalcommission.gov.au/system/files/2023-09/Final%20Report%20-%20Volume%207%2C%20Inclusive%20education%2C%20employment%20and%20housing%20-%20Part%20C.pdf">final report</a> both highlighted the crucial role of accessible buildings and homes in ensuring the inclusion of people with disabilities.</p> <p>But the experiences of people with disability show Australia is a very long way from achieving this. There are the stories from people with disability who <a href="https://www.abc.net.au/news/2023-06-25/taylor-swift-concert-disability-access-concerns/102520088">can’t enjoy events</a> or <a href="https://www.abc.net.au/news/2023-03-09/harry-styles-concert-disability-tickets-consumer-rights/102060698">venues</a>. And researchers say even <a href="https://www.unsw.edu.au/arts-design-architecture/our-research/research-impact/case-studies/are-our-accessible-bathrooms-inaccessible-to-people-in-wheelchairs">accessible bathrooms are not usable</a> for half the people with disability.</p> <p>What can be called an accessible building or home? And should standards be improved?</p> <h2>What is accessibility?</h2> <p>The <a href="https://www.ohchr.org/en/instruments-mechanisms/instruments/convention-rights-persons-disabilities">Convention on the Rights of Persons with Disability</a> includes the right to accessibility. Australia’s 1992 <a href="https://humanrights.gov.au/our-work/disability-rights/frequently-asked-questions-access-premises">Disability Discrimination Act</a> includes premises standards to ensure people with disability have “dignified, equitable, cost-effective and reasonably achievable access to buildings, facilities and services”.</p> <p>However, a building is exempt if the owners can demonstrate modifying a building would cause them “unjustifiable hardship”. The burden of making a complaint about an inaccessible building falls on people with disability and the act also does not apply to private homes.</p> <p>Although experts follow different definitions of accessibility, they generally include some key principles:</p> <ul> <li> <p>easy entry and exit into a building</p> </li> <li> <p>easy navigation and functionality in and around the building</p> </li> <li> <p>potential for easy adaptation in response to changing needs of occupants.</p> </li> </ul> <p>An accessible building is one where people of all abilities are able move and carry out activities independently, safely, in comfort and with dignity.</p> <p>For people with disabilities <a href="https://disability.unimelb.edu.au/__data/assets/pdf_file/0010/3969109/Accessible-Housing-Research-Report-22-October-2020.pdf">many buildings are inaccessible</a>. In these buildings, basic everyday activities such as taking a shower or preparing breakfast becomes difficult, tiring, uncomfortable and sometimes dangerous.</p> <p>Some people have been <a href="https://disability.unimelb.edu.au/__data/assets/pdf_file/0010/3969109/Accessible-Housing-Research-Report-22-October-2020.pdf">injured</a> repeatedly in inaccessible homes, for example falling down a staircase. Such injuries may compound their disability. Many people with disabilities worry that if they’re injured at home, they will be forced to move permanently into a nursing home.</p> <p><a href="https://www.sciencedirect.com/science/article/pii/S0016718523001525">Studies</a> have found living in inaccessible homes severely harms the dignity, independence, social inclusion, employment, health and wellbeing of people with disabilities.</p> <p>People become more reliant on family members for support, putting strain on their relationships. Difficulty getting in and out of the house for social activities worsens social isolation. A sense of fatigue also reduces the motivation and capacity to work.</p> <h2>Access through the front door</h2> <p>Dignity is a crucial aspect of accessibility but it is often forgotten. For example, many buildings’ front entry has stairs that make it inaccessible for wheelchair users. There may be an accessible ramp entry in the back of the building. The building is then considered accessible, since wheelchair users can enter and exit. But such a “backdoor treatment” can be experienced as an indignity and discrimination.</p> <p>Accessible toilets are sometimes used for <a href="https://www.sbs.com.au/news/article/most-public-toilets-inaccessible-to-people-with-disabilities/adsx7cnr8">storage, locked or out of order</a>. Again, although the design meets accessibility standards, in practice the building is inaccessible because of poor management.</p> <p>And accessibility is not exclusively about physical disabilities and physical barriers.</p> <p>People with cognitive disabilities, for example, might struggle to find their way in a building if way-finding signs are difficult to understand. <a href="https://theconversation.com/for-people-with-communication-disability-complaining-about-their-treatment-isnt-so-simple-214717">Communication accessibility</a> in building is achieved when the information needed to navigate and use the building is understood by everyone, no matter how they communicate.</p> <h2>Silver, gold and platinum standards</h2> <p>There are different levels of accessibility. In Australia, housing accessibility is most often assessed according to <a href="https://livablehousingaustralia.org.au/wp-content/uploads/2021/02/SLLHA_GuidelinesJuly2017FINAL4.pdf">Livable Housing Australia</a>’s (LHA) three standards of silver, gold and platinum. Silver-level homes have minimal accessibility features, but are designed in a way that enables easy home modifications over time.</p> <p>The silver standard of accessibility requires seven features:</p> <p>• a step-free path of travel from the street or parking area</p> <p>• at least one step-free entrance</p> <p>• internal doors and corridors that allow comfortable movement, including for people using wheelchairs</p> <p>• a toilet on the entry level with easy access</p> <p>• a bathroom with a hobless shower recess, so there isn’t a step-over barrier to entry</p> <p>• reinforced walls around the toilet, shower and bath. These allow installation of grabrails later if needed</p> <p>• stairways designed to reduce the risk of injury and also enable future adaptation.</p> <p>Gold-level homes have additional accessibility features. Platinum homes are designed for people with higher mobility needs and to allow ageing at home.</p> <h2>A patchwork of standards and what the NDIS review says</h2> <p>In 2021 Australian housing ministers <a href="https://www.industry.gov.au/news/building-ministers-meeting-communique-april-2021">agreed for the first time</a> to introduce minimum accessibility standards in the National Construction Code. It followed decades of campaigning by activist groups such as the <a href="https://anuhd.org/">Australian Network for Universal Housing Design</a>, <a href="https://riaustralia.org/">Rights and Inclusion Australia</a> and the <a href="https://www.summerfoundation.org.au/">Summer Foundation</a>.</p> <p>The code requires all new homes be built to silver standards. It does not apply to existing homes and exemptions will apply for some newly built homes because of site restrictions.</p> <p>When the code was introduced, New South Wales and Western Australia announced they would not adopt the new code. Both the NDIS review and the disability royal commission recommended all states and territories <a href="https://disability.royalcommission.gov.au/system/files/2023-09/Final%20Report%20-%20Volume%207%2C%20Inclusive%20education%2C%20employment%20and%20housing%20-%20Part%20C.pdf">immediately adopt</a> the code’s new accessibility standards.</p> <p>A consistent application of the code’s new standards across Australia is a good start. But the code provides only the minimum standard of accessibility. To make buildings and homes truly accessible, we need to improve education on accessibility for designers, operators and consumers.</p> <h2>An urgent national priority</h2> <p>With Australia’s ageing population, most people will experience disability – or have a household member with disability – at some point.</p> <p>Accessible homes and buildings can reduce pressure on the health system and improve quality of life. A consistent national construction code is just the first step urgently needed to improve building accessibility and inclusion so people with disability have autonomy and flourish.<img style="border: none !important; box-shadow: none !important; margin: 0 !important; max-height: 1px !important; max-width: 1px !important; min-height: 1px !important; min-width: 1px !important; opacity: 0 !important; outline: none !important; padding: 0 !important;" src="https://counter.theconversation.com/content/217278/count.gif?distributor=republish-lightbox-basic" alt="The Conversation" width="1" height="1" /></p> <p><em><a href="https://theconversation.com/profiles/ilan-wiesel-303040">Ilan Wiesel</a>, Associate Professor in Urban Geography, <a href="https://theconversation.com/institutions/the-university-of-melbourne-722">The University of Melbourne</a> and <a href="https://theconversation.com/profiles/rebecca-bentley-173502">Rebecca Bentley</a>, Professor of Social Epidemiology and Director of the Centre of Research Excellence in Healthy Housing at the Melbourne School of Population and Global Health, <a href="https://theconversation.com/institutions/the-university-of-melbourne-722">The University of Melbourne</a></em></p> <p><em>Image credits: Getty Images</em></p> <p><em>This article is republished from <a href="https://theconversation.com">The Conversation</a> under a Creative Commons license. Read the <a href="https://theconversation.com/what-does-a-building-need-to-call-itself-accessible-and-is-that-enough-217278">original article</a>.</em></p>

Caring

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"I’m not going to be cured". How breast cancer awareness and support sidelines people with metastatic disease

<p><em><a href="https://theconversation.com/profiles/sophie-lewis-111177">Sophie Lewis</a>, <a href="https://theconversation.com/institutions/university-of-sydney-841">University of Sydney</a>; <a href="https://theconversation.com/profiles/andrea-smith-15431">Andrea Smith</a>, <a href="https://theconversation.com/institutions/university-of-sydney-841">University of Sydney</a>, and <a href="https://theconversation.com/profiles/katherine-kenny-318175">Katherine Kenny</a>, <a href="https://theconversation.com/institutions/university-of-sydney-841">University of Sydney</a></em></p> <p>There have been incredible <a href="https://www.cancer.gov/types/breast/research">advances</a> in breast cancer diagnosis and treatment in recent years. And stories about celebrities who have “beaten” breast cancer continue to be a source of inspiration for many people.</p> <p>However, this emphasis on fighting, beating and surviving cancer shuts out the voices of those who will not survive. That is, the many people diagnosed with incurable, life-limiting metastatic breast cancer, <a href="https://www.aihw.gov.au/reports/cancer/cancer-data-in-australia">which kills nine Australians every day</a> or nearly <a href="https://www.aihw.gov.au/reports/cancer/cancer-data-in-australia">3,300 people</a> a year. Yet an <a href="https://www.bcna.org.au/latest-news/bcna-news/making-metastatic-breast-cancer-count/">estimated 10,000</a> Australians are living with the diagnosis.</p> <p>Being diagnosed with metastatic breast cancer, as one of the authors has been, means ongoing treatment to live as long, and as well, as possible. It also means an ongoing need for emotional and practical support.</p> <p>However, society, health-care professionals, cancer advocacy organisations, even a patient’s closest family and friends, can struggle to understand what it is like to live with an incurable and life-limiting cancer and how best to provide support.</p> <h2>Why is there so little awareness?</h2> <p><a href="https://www.breastcancer.org/types/metastatic">Metastatic breast cancer</a>, also called stage four breast cancer, is the most serious form of breast cancer. Unlike early breast cancer that is contained within the breast or nearby lymph nodes, metastatic breast cancer has spread to other parts of the body, most often the bones, lungs, liver, or brain.</p> <p>There is no cure for metastatic breast cancer despite decades of advocacy, funding and research. Treatment continues for as long as it helps to control the cancer and is tolerated by the patient. Median survival is <a href="https://onlinelibrary.wiley.com/doi/10.5694/mja2.51687">two to three years</a>, although newer, novel treatments mean some patients are living much longer.</p> <p>As a society, we can be uncomfortable <a href="https://theconversation.com/before-you-go-are-you-in-denial-about-death-34056">talking about and facing death</a>. When it comes to cancer, we usually prefer focusing on good news stories. These narratives are often perceived to be better for fundraising and are reassuring for people newly diagnosed. But they fail to <a href="https://onlinelibrary.wiley.com/doi/10.1111/1467-9566.13704">represent</a> the diversity and reality of cancer experiences.</p> <p>Despite considerable research into people with non-metastatic breast cancer, <a href="https://www.bcna.org.au/latest-news/bcna-news/making-metastatic-breast-cancer-count/">relatively little</a> is known about Australians with metastatic breast cancer.</p> <h2>Feeling silenced and unsupported</h2> <p>Through our <a href="https://onlinelibrary.wiley.com/doi/10.1111/1467-9566.13704">research</a> we wanted to better understand people’s experiences of metastatic breast cancer. We interviewed 38 participants from around Australia with diverse experiences of metastatic breast cancer. Participants were recruited through breast cancer and community organisations.</p> <p>We found messages and public campaigns about cancer survivorship, which emphasise hope and positivity, drowned out the voices of those with metastatic breast cancer. The focus on “success stories” about surviving breast cancer made some people feel like it was their responsibility to “beat” cancer. If they didn’t, it was their own fault. </p> <p>As one interviewee told us: "I react quite badly to all the, ‘we’ve had breast cancer and we beat it and we’ve survived. Aren’t we fantastic.’ There’s almost a feeling if you haven’t beaten your breast cancer you haven’t tried hard enough."</p> <p>Silence around metastatic breast cancer was common in research participants’ experiences. It prevented many from connecting with others and to the support they needed. It even affected relationships with those closest to them leaving them feeling misunderstood: "They don’t realise I’ve got to be on treatment forever. I’m not going to be cured. I think society thinks everything can be fixed; metastatic breast cancer actually can’t be fixed."</p> <p>Sharing deep fears and worries about their life expectancy can leave people with metastatic breast cancer feeling drained rather than supported. Many participants reported having to support and shield family, friends, acquaintances and work colleagues from the reality of their terminal diagnosis.</p> <p>"You hide how you feel because you don’t want to be avoided […] You put on that big, happy face. But like an onion if you peeled the layers away, you’d find out what’s going on."</p> <p>While many participants wanted to join a community of people with metastatic breast cancer, they struggled to know how to find one. Those who did, emphasised how invaluable it had been: "Being able to identify with and know that these people really get me is a huge relief and it reduces the isolation."</p> <p>These findings echo <a href="https://www.bcna.org.au/media/alcjjmm2/bcna_member-survey-report_2017.pdf">previous research</a> demonstrating people with metastatic breast cancer have higher support needs than those with non-metastatic breast cancer. And these needs are <a href="https://www.bcna.org.au/media/alcjjmm2/bcna_member-survey-report_2017.pdf">less likely to be met</a> by <a href="https://bmchealthservres.biomedcentral.com/articles/10.1186/s12913-022-08269-8">health care, support services</a>, family or friends.</p> <h2>A new path</h2> <p>Being diagnosed with metastatic breast cancer can be terrifying, lonely and create significant support needs. It is essential people with metastatic breast cancer have their <a href="https://ascopubs.org/doi/10.1200/OP.20.00183">voices listened to</a> and their needs met.</p> <p>Next steps should include:</p> <ul> <li> <p><a href="https://bcna-dxp.azureedge.net/media/d32bhdzf/bcna_making-metastatic-breast-cancer-count_2022.pdf">improving data collection by cancer registries</a> so we know exactly how many people in Australia have metastatic breast cancer</p> </li> <li> <p>increasing representation of people with metastatic breast cancer in advocacy, support organisations and research</p> </li> <li> <p>nationwide access to peer-to-peer programs and professionally led metastatic breast cancer support groups.</p> </li> </ul> <p>We must ensure people with metastatic breast cancer are the ones to speak to their experience and needs. As a colleague with metastatic breast cancer said: "I read an article written by an early-stage breast cancer ‘survivor’. It felt like someone describing winter when they had only ever experienced autumn."</p> <p>If you or someone you know has metastatic breast cancer, these organisations may be able to support you or connect you with others with the same diagnosis:</p> <ul> <li> <p><a href="https://www.bcna.org.au">Breast Cancer Network Australia</a> for information and support</p> </li> <li> <p><a href="https://www.mcgrathfoundation.com.au/">McGrath Foundation</a> for information about access to metastatic breast care nurses.</p> </li> </ul> <hr /> <p><em>The authors would like to thank the members of Breast Cancer Network Australia’s Metastatic Breast Cancer Lived Experience Reference Group for their review of this article.</em><img style="border: none !important; box-shadow: none !important; margin: 0 !important; max-height: 1px !important; max-width: 1px !important; min-height: 1px !important; min-width: 1px !important; opacity: 0 !important; outline: none !important; padding: 0 !important;" src="https://counter.theconversation.com/content/215458/count.gif?distributor=republish-lightbox-basic" alt="The Conversation" width="1" height="1" /></p> <p><em><a href="https://theconversation.com/profiles/sophie-lewis-111177">Sophie Lewis</a>, Senior Lecturer, University of Sydney, <a href="https://theconversation.com/institutions/university-of-sydney-841">University of Sydney</a>; <a href="https://theconversation.com/profiles/andrea-smith-15431">Andrea Smith</a>, Research fellow, <a href="https://theconversation.com/institutions/university-of-sydney-841">University of Sydney</a>, and <a href="https://theconversation.com/profiles/katherine-kenny-318175">Katherine Kenny</a>, ARC DECRA Senior Research Fellow, <a href="https://theconversation.com/institutions/university-of-sydney-841">University of Sydney</a></em></p> <p><em>Image credits: Getty Images</em></p> <p><em>This article is republished from <a href="https://theconversation.com">The Conversation</a> under a Creative Commons license. Read the <a href="https://theconversation.com/im-not-going-to-be-cured-how-breast-cancer-awareness-and-support-sidelines-people-with-metastatic-disease-215458">original article</a>.</em></p>

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Heavily pregnant mum and disabled child kicked off plane

<p>Siobhan Foster, her husband, and their disabled child were kicked off their flight after she was accused of being "aggressive" by a flight attendant.</p> <p>Foster, who is seven months pregnant, was onboard an easyJet flight to Ibiza to celebrate her brother's wedding.</p> <p>She struggled to find room for her carry-on in the overhead baggage compartment, so she asked a flight attendant to help her find space, but the response was reportedly "a sharp ‘Clearly Not’", which eventually led to a dispute. </p> <p>When things escalated, all 180 passengers were eventually told to disembark. </p> <p>One of Foster's outraged friends posted the <a href="https://www.thesun.co.uk/news/23859832/easyjet-passengers-kicked-off-pregnant-mum-stewardess-fight/" target="_blank" rel="noopener">video</a> on social media, and the Newtonabbey mum was seen collecting hand luggage while struggling to carry her toddler.</p> <p>“We’re being thrown off the plane today because of somebody thinking they’re better than everyone else,” the friend said.</p> <p>The easyJet stewardess responded: “Bye, bye bye," as the upset family walked down the stairs. </p> <p>Foster took to Facebook to complain about her experience with "sleezy jet".</p> <p>“So, I asked could you help me find somewhere, her reply was ‘You’ll need to find somewhere yourself’ even though there literally was nowhere," she wrote. </p> <p>She then claimed that she asked for help again, because she was heavily pregnant, to which the flight attendant allegedly said:  "You’re being abusive and it’s not my job to help you.”</p> <p>Another flight attendant reportedly backed up her co-worker, but Foster argued that other airlines have been more helpful as she is pregnant. </p> <p>“Writing this, I understand it would make you think was I being abusive, but I honestly wasn’t and the whole plane can vouch for me,” Foster wrote. “People were actually putting this on [Facebook] about how bad I was treated.”</p> <p>After eventually finding a place for her bag, the pregnant mum was allegedly confronted by two other crew members who also accused her of being “aggressive.”</p> <p>Foster decided to ignore them because she was "crying" and "so upset," but the flight attendant reportedly started raising her voice. </p> <p>They were then kicked off, and were told it was because of Foster's aggression,  but when Foster’s mum and brother asked for an exact reason, the crew members allegedly couldn't give them a direct response. </p> <p>After an hour, everyone had to disembark and the family were met by eight police officers and two Swissport employees and were told they would not be allowed back on the flight, despite other passengers being allowed back in.</p> <p>“So, that whole day we were in Belfast airport from one lunchtime to nine that night with our child, my legs were so swollen and sore with being on them all this time I was crying uncontrollably that this was happening to us for no reason whatsoever.</p> <p>“I’m so traumatized to the point I don’t know how I’ll ever fly again,” she wrote on Facebook.</p> <p>EasyJet has denied any wrongdoing and a spokesperson told the Daily Mail that "a group of passengers were "behaving disruptively."</p> <p>“EasyJet’s cabin crew and ground agents are trained to assess and evaluate all situations and to act quickly and appropriately to ensure that the safety of the flight and other passengers is not compromised at any time.</p> <p>“The Captain took the decision to ask all passengers on the flight to return to the terminal so the situation could be resolved and as soon as it was they re-boarded and the aircraft continued to Ibiza.”</p> <p>Despite the incident, the Foster family eventually made it to Ibiza the next day, just in time for the wedding, after catching a RyanAir flight out of Dublin. </p> <p>“Thankfully we got to Ibiza and made my brother’s wedding to say how stressed, upset, and overwhelmed I’ve been I honestly think I’ve no words,” she wrote.</p> <p>“EasyJet should be ashamed of themselves and I most definitely am taking this further, I’m still in shock of how we were treated especially being seven months pregnant and having a disabled child with us.”</p> <p><em>Images: Facebook</em></p>

Travel Trouble

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Ableism and disablism – how to spot them and how we can all do better

<p><em><a href="https://theconversation.com/profiles/kelsey-chapman-1345505">Kelsey Chapman</a>, <a href="https://theconversation.com/institutions/griffith-university-828">Griffith University</a>; <a href="https://theconversation.com/profiles/angel-dixon-1412256">Angel Dixon</a>, <a href="https://theconversation.com/institutions/griffith-university-828">Griffith University</a>; <a href="https://theconversation.com/profiles/elizabeth-kendall-210342">Elizabeth Kendall</a>, <a href="https://theconversation.com/institutions/griffith-university-828">Griffith University</a>, and <a href="https://theconversation.com/profiles/katie-kelly-1436986">Katie Kelly</a>, <a href="https://theconversation.com/institutions/griffith-university-828">Griffith University</a></em></p> <p>When the 2022 Australian of the Year was announced, <a href="https://www.sbs.com.au/news/article/the-defining-moments-of-dylan-alcotts-time-as-australian-of-the-year/anpkgw2gw">Dylan Alcott</a> wheeled onto the stage. Australian audiences are tuning in to watch TV shows featuring people with disability: <a href="https://iview.abc.net.au/show/you-can-t-ask-that/series/7/video/LE2021H003S00?gclid=EAIaIQobChMIlMCoiYLY_gIVl1l9Ch2plwHkEAAYASAAEgKiC_D_BwE&amp;gclsrc=aw.ds">You Can’t Ask That</a>, <a href="https://iview.abc.net.au/show/love-on-the-spectrum">Love on the Spectrum</a> and <a href="https://iview.abc.net.au/show/employable-me-australia">Employable Me</a>.</p> <p>The Disability Pride movement is gaining momentum and people with disability are becoming part of the diversity conversation.</p> <p>On the surface, it would appear we have come a long way in our collective attitudes towards disability. But two of society’s biggest “-isms” still go largely <a href="https://www.abc.net.au/news/2023-02-27/harry-styles-concerts-marvel-stadium-accessibility-chloe-hayden/102025124">unnoticed and unaddressed</a>: ableism and disablism.</p> <p>What do these terms mean? And how can we all do better to dismantle them?</p> <h2>Two types of discrimination</h2> <p>Ableism and disablism both refer to types of disability discrimination. The nuance between the two words can cause confusion but are important for acknowledging, detecting, and dismantling the types of barriers people with disability encounter.</p> <p><a href="https://www.attitude.org.au/uploads/120/Perspective%20Shift_Series%201_Study%20Guide_Nov_FINAL.pdf">Ableism</a> is discrimination that favours “able-bodied” people, or people without disability. Ableism prioritises the needs of people without disability. A building designed without a ramp or a lift for people who require them, a lack of captions for a meeting, and stadiums without <a href="https://www.smh.com.au/lifestyle/health-and-wellness/what-is-a-sensory-space-and-why-are-they-so-important-20230227-p5cnwy.html">low-sensory spaces</a> are all examples of ableism.</p> <p><a href="https://www.sense.org.uk/information-and-advice/ableism-and-disablism/">Disablism</a> is the inherent belief that people with disability are inferior to those without disability. It is discrimination against people with disability, like those shared in the <a href="https://disability.royalcommission.gov.au/system/files/2022-03/Issues%20paper%20-%20Rights%20and%20attitudes.pdf">Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability</a>. Disablism can be a more direct, conscious act of discrimination and abuse. Using disability slurs, ignoring someone, or speaking in a patronising way are common examples.</p> <blockquote class="twitter-tweet"> <p dir="ltr" lang="en">Weekly reminder: If your event doesn't have a virtual option, it's not inclusive or accessible. Thank you for coming to my Twitter talk on <a href="https://twitter.com/hashtag/ableism?src=hash&amp;ref_src=twsrc%5Etfw">#ableism</a></p> <p>— chantzy (@chantz_y) <a href="https://twitter.com/chantz_y/status/1653033877105934339?ref_src=twsrc%5Etfw">May 1, 2023</a></p></blockquote> <h2>Ingrained and everywhere</h2> <p>If we are honest, we can acknowledge ableism and disablism are ubiquitous in our language, our homes, children’s stories, media, at work and in our daily social interactions. Indeed, ableism and disablism can be so ingrained in our daily lives that most people are unaware of them.</p> <p>Both forms of discrimination can be subtle and insidious, making them difficult to detect and address. They often operate at systemic levels and are not identified as discrimination.</p> <p>A good example of systemic ableism is the forced segregation of people with disability into <a href="https://disability.royalcommission.gov.au/system/files/2022-03/Issues%20paper%20-%20Education%20and%20learning.pdf">“special” schools or “sheltered” workplaces</a> through limited choice and structural support of these options. Although the process of forcing people into these options no longer occurs in such blatantly disrespectful ways, the result is the same.</p> <p>Ableist and disablist attitudes are frequently encountered in daily conversation. Subtle ableism manifests in the use of well-intended “empathetic” comments, like “I can’t imagine losing my eyesight. That would be the worst.” These remarks, even when intended to prompt a connection between two people, reveal deep-seated beliefs and create a greater divide.</p> <p>People with disability, along with other marginalised communities, categorise these types of interactions as “<a href="https://hbr.org/2020/07/when-and-how-to-respond-to-microaggressions">microaggressions</a>”.</p> <p>Disablist attitudes are more overt. Comments like “If you are unable to walk down the ramp then you shouldn’t have gotten tickets to this concert” demonstrate the low expectations and damaging beliefs that impact on people’s opportunities for education, employment and social interaction.</p> <h2>Challenging but worth it</h2> <p>Combating disablism and ableism is a great challenge but one that is worthwhile. A broad spectrum of challenges is at play: confronting and disrupting the status quo, valuing diverse types of knowledge and experience and acknowledging the unconscious biases we all have.</p> <p>At a systemic and societal level, the way we design and deliver systems, polices, virtual and physical environments, products and experiences need to be co-designed in partnership with people with disability – or better yet, through disability-led initiatives.</p> <p>Generating new ideas and better ways of working will contribute to improvements in daily life for all people – just like ramps benefit parents pushing prams and people using mobility aids.</p> <p>The emphasis on <a href="https://anzsog.edu.au/research-insights-and-resources/research/the-promise-of-co-design-for-public-policy/">co-design</a> and engagement with people with disability is <a href="https://onlinelibrary.wiley.com/doi/full/10.1111/1440-1630.12847">increasingly prevalent</a>. However, it is critical to conduct co-design in ways that are not tokenistic and don’t merely validate current practice. Frameworks like the <a href="https://onlinelibrary.wiley.com/doi/full/10.1111/1440-1630.12847">Dignity Project Framework</a>, which includes principles of importance for engaging with people with disability, can better support a dignified process of co-design and citizen partnership.</p> <h2>‘Not yet disabled’</h2> <p>At an individual level, we all have a part to play in creating an inclusive future.</p> <p>Disability has been called the <a href="https://www.un.org/development/desa/disabilities/resources/factsheet-on-persons-with-disabilities.html">world’s largest minority</a> and is a group any person can join at any time in their life.</p> <p>The late disability rights activist <a href="https://judithheumann.com/">Judith Heumann</a> preferred to use the term “not yet disabled” to emphasise that we will all experience impairment and disability at some stage. Thus, we may all confront ableism and disablism at some point. The way to prepare for that time is to actively acknowledge and challenge personal biases, learn about and advocate for accessibility and inclusion in the spaces where you live, work and play and amplify the voices of people with disability at every opportunity.</p> <p>As advocate <a href="https://tiltingthelens.com/about-us/#:%7E:text=As%20a%20passionate%20writer%2C%20podcast,of%20Fashion%2C%20and%20many%20more.">Sinead Burke from Tilting the Lens</a> says in <a href="https://www.vogue.co.uk/article/vogue-disability-portfolio-2023">British Vogue’s</a> May issue, "Accessibility and disability inclusion is everyone’s responsibility and opportunity. This is a movement, not a moment. And it involves all of us.<img style="border: none !important; box-shadow: none !important; margin: 0 !important; max-height: 1px !important; max-width: 1px !important; min-height: 1px !important; min-width: 1px !important; opacity: 0 !important; outline: none !important; padding: 0 !important;" src="https://counter.theconversation.com/content/204541/count.gif?distributor=republish-lightbox-basic" alt="The Conversation" width="1" height="1" />"</p> <p><em><a href="https://theconversation.com/profiles/kelsey-chapman-1345505">Kelsey Chapman</a>, Research Fellow Dignity Project, <a href="https://theconversation.com/institutions/griffith-university-828">Griffith University</a>; <a href="https://theconversation.com/profiles/angel-dixon-1412256">Angel Dixon</a>, Researcher, <a href="https://theconversation.com/institutions/griffith-university-828">Griffith University</a>; <a href="https://theconversation.com/profiles/elizabeth-kendall-210342">Elizabeth Kendall</a>, Professor, Director, Griffith Inclusive Futures, Griffith University, <a href="https://theconversation.com/institutions/griffith-university-828">Griffith University</a>, and <a href="https://theconversation.com/profiles/katie-kelly-1436986">Katie Kelly</a>, Research fellow, <a href="https://theconversation.com/institutions/griffith-university-828">Griffith University</a></em></p> <p><em>Image credits: Getty </em><em>Images </em></p> <p><em>This article is republished from <a href="https://theconversation.com">The Conversation</a> under a Creative Commons license. Read the <a href="https://theconversation.com/ableism-and-disablism-how-to-spot-them-and-how-we-can-all-do-better-204541">original article</a>.</em></p>

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"Broke my heart": Mum's outrage at stranger's comment about her disabled son

<p>A Sydney mother has shared her shock and outrage after a stranger made "rude" comments about her son. </p> <p>Tori Boyadji and her friend Lyndal were walking through Collaroy Park in Sydney's north with Tori's two-year-old son Isaac, who has Down syndrome. </p> <p>The friends were stopped by a woman who looked at Isaac and exclaimed, "Ohh is this a little downsie?"</p> <p>Tori, 28, went on to recount how the stranger said she would "never want a kid with Down syndrome" herself.</p> <p>Ms Boyadji told <a href="https://www.dailytelegraph.com.au/news/nsw/sydney-mum-tori-boyadji-shocked-by-strangers-taunt-to-her-son/news-story/d8e3ee46ad9ed07ded6776987ff220f7" target="_blank" rel="noopener"><em>The Daily Telegraph</em></a> that the stranger's comments left her feeling very upset. </p> <p>"Lyndal and I just looked at each other in disbelief – I’m not easily offended but this comment truly broke my heart," she said. </p> <p>"Why would you say that to two mums with their adorable kids right there?"</p> <p>Tori said Isaac is just like any other toddler, as he loved The Wiggles and going to the beach. </p> <p>"He also happens to have Down syndrome — but this is the least interesting part of him," she said.</p> <p>Rhonda Faragher, Associate Professor of Inclusion and Diversity at Queensland University, weighed in on the exchange, and shared her thoughts that the major issue lays with the fact that people believe those with Down syndrome need to change in some way. </p> <p>"In my view, it's not the language itself, it's what's behind the language," she explained to <a href="https://au.news.yahoo.com/sydney-mums-shock-at-strangers-rude-comment-about-disabled-son-073246046.html" target="_blank" rel="noopener"><em>Yahoo News Australia</em></a>.</p> <p>"That somebody in the community would feel [a child with Down Syndrome] would not be a child they'd like to have in their family without even knowing the child."</p> <p>"I think it's [disappointing] that other people don't understand that this is not a tragedy," she added. "Having a person with Down syndrome in your family, in your life, is actually a terrific blessing."</p> <p><em>Image credits: Instagram </em></p>

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3 reasons you should never view or share videos showing children being assaulted – even if you think it helps ‘raise awareness’

<p>Australians have been shocked by an <a href="https://www.theguardian.com/australia-news/2023/mar/22/queensland-children-aged-between-12-and-14-charged-after-allegedly-assaulting-girl-over-several-hours">incident</a> on the Sunshine Coast this month in which a 13-year-old girl was imprisoned, assaulted and tortured over many hours, allegedly by three girls aged 12, 13 and 14.</p> <p>The alleged perpetrators also filmed the abuse, which went <a href="https://www.news.com.au/national/queensland/crime/three-girls-charged-after-13yearold-allegedly-lured-to-home-and-tortured/news-story/c08af6c838e54fc0d39c449e57f9719a">viral online</a> with photos and videos being shared across news outlets and social media profiles.</p> <p>Some people may think they’re supporting victims by watching the videos and then expressing their outrage at their treatment. Morbid curiosity about the event might also prompt people to view the photos or videos.</p> <p>But there are three key reasons why you should never view, download or share photos or videos of children being assaulted.</p> <h2>1. You may be committing a criminal offence</h2> <p>Photos and videos showing this 13-year-old girl allegedly being assaulted and tortured are unlawful. Content such as this is called child sexual abuse material (CSAM), which has <a href="https://theconversation.com/whats-in-a-name-online-child-abuse-material-is-not-pornography-45840">previously been called child pornography</a>.</p> <p>Child sexual abuse material is <a href="https://theconversation.com/virtual-child-sexual-abuse-material-depicts-fictitious-children-but-can-be-used-to-disguise-real-abuse-180248">offensive or sexual online material</a> depicting children. It’s a criminal offence to possess, view, share or create it.</p> <p>It isn’t just pornographic material. These laws extend to material that depicts children being assaulted and tortured, even without a sexual element.</p> <p>Criminal offences exist for possessing, viewing, sharing or creating such material. Each state and territory jurisdiction, and the Commonwealth, has their own legislation which may have a slightly <a href="https://bridges.monash.edu/articles/journal_contribution/Lawful_Acts_Unlawful_Images_The_Problematic_Definition_of_Child_Pornography/10064963/1">different perspective</a> on whether a person has committed an offence.</p> <p>Criminal offences can be committed in the following circumstances:</p> <ol> <li> <p>if someone <a href="https://papers.ssrn.com/sol3/papers.cfm?abstract_id=2277239">downloads</a> a child assault photo or video, they are “possessing” child sexual abuse material</p> </li> <li> <p>where someone posts it to their social media page or <a href="https://heinonline.org/HOL/LandingPage?handle=hein.journals/utasman40&amp;div=14&amp;id=&amp;page=">sends it</a> via email to others, they are “distributing” or “disseminating” child sexual abuse material</p> </li> <li> <p>when someone <a href="https://www.cdpp.gov.au/crimes-we-prosecute/child-exploitation">watches</a> a child assault video online without downloading, or looks at a photo, they are still “accessing” (viewing) such material, which can be an offence.</p> </li> </ol> <p>It doesn’t matter if the child victim indicates their approval for the material to be promulgated. Children are <a href="https://www.aic.gov.au/sites/default/files/2020-05/58-1213-FinalReport.pdf">unable to consent</a> to material depicting their own assault being shared or viewed by others.</p> <h2>2. You are perpetuating the abuse suffered by the victim</h2> <p>Watching and sharing child abuse photos or videos does not support the victim. Every photo and video depicting child abuse <a href="https://theconversation.com/it-is-not-child-pornography-it-is-a-crime-scene-photo-12465">shows a crime scene</a>.</p> <p>A victim’s abuse being captured and shared as a video is a <a href="https://www.sciencedirect.com/science/article/abs/pii/S0145213419303667">regular reminder</a> of their abuse. The photos or videos can cause <a href="https://www.aic.gov.au/publications/tandi/tandi653">ongoing harm to a child victim</a>, beyond any physical harm they may have recovered from.</p> <p>US researchers conducted <a href="https://www.sciencedirect.com/science/article/abs/pii/S0145213418301510?via%3Dihub">a study</a>, published in 2018, to analyse the complex experiences of survivors (adults who, as children, had material of their abuse shared online).</p> <p>The participants described ongoing feelings of guilt and shame, and a feeling of enduring vulnerability because their records of abuse will always be online for others to see.</p> <p>As one survivor, not part of this study, <a href="https://www.emerald.com/insight/content/doi/10.1108/978-1-83982-848-520211053/full/html">said</a> "I have to live with the knowledge that my abuse will never end, and that every second of every day, someone could be – almost certainly is – watching my torture and abuse. Even once I’m dead, my degradation will continue. I will never be able to escape it. This trauma is infinite.</p> <p>Some also described an empowering dimension because the material provided validation of the abuse they suffered, or could be used as evidence in court.</p> <p>While victims may all process their experiences in different ways, it’s important to be mindful of the detrimental and ongoing effects on a child victim of an assault being captured and shared online.</p> <p>As a community, we must do everything we can to support those children, including refusing to watch or share photos or videos of their abuse.</p> <h2>3. You are giving undeserved notoriety to the perpetrators</h2> <p>Some perpetrators use records of their offending to create social media content for notoriety.</p> <p>“Performance crimes” allow perpetrators to use their online platform <a href="http://www8.austlii.edu.au/cgi-bin/viewdoc/au/journals/CICrimJust/2015/21.html">for attention</a>.</p> <p>Terrorism is another example, where terror attacks have been <a href="https://theconversation.com/social-media-create-a-spectacle-society-that-makes-it-easier-for-terrorists-to-achieve-notoriety-113715">livestreamed</a> and media outlets have responded by refusing to name the perpetrators.</p> <p>Do not reward the perpetrators by giving them a platform.</p> <h2>How should we respond?</h2> <p>It’s important we, as a community, acknowledge that children whose assaults are captured in photos and videos have been through a traumatic experience and need support.</p> <p>Watching or sharing their assault only perpetuates the abuse.</p> <p>We must refuse to watch videos of child abuse, and delete them if they’re sent to us.</p> <p>We then need to trust that police will conduct thorough investigations that will result in an appropriate outcome.</p> <p><em>This article originally appeared on <a href="https://theconversation.com/3-reasons-you-should-never-view-or-share-videos-showing-children-being-assaulted-even-if-you-think-it-helps-raise-awareness-202610" target="_blank" rel="noopener">The Conversation</a>.</em></p> <p><em>Images: Shutterstock</em></p>

Technology

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How on-demand buses can transform travel and daily life for people with disabilities

<p>People with disabilities arguably stand to gain the most from good public transport, but are continually excluded by transport systems that still aren’t adapted to their needs as the law requires. <a href="https://www.aihw.gov.au/getmedia/ee5ee3c2-152d-4b5f-9901-71d483b47f03/aihw-dis-72.pdf.aspx?inline=true">One in six people</a> aged 15 and over with disability have difficulty using some or all forms of public transport. One in seven are not able to use public transport at all. </p> <p>Under the <a href="https://www.legislation.gov.au/Details/C2018C00125">Disability Discrimination Act 1992</a>, Australia’s public transport systems were expected to be fully compliant with the 2002 <a href="https://www.infrastructure.gov.au/infrastructure-transport-vehicles/transport-accessibility">Transport Standards</a> by December 31 2022. Not only have many of our bus, train and tram systems <a href="https://www.disabilitysupportguide.com.au/talking-disability/public-transport-remains-inaccessible-as-20-year-targets-are-not-met">failed to meet these targets</a>, but the standards themselves are outdated. The standards are <a href="https://www.infrastructure.gov.au/infrastructure-transport-vehicles/transport-accessibility/2022-review-transport-standards">under review</a> and public consultation has begun.</p> <p>For buses, the standards <a href="https://www.mcw.com.au/why-public-transport-operators-must-review-their-vehicles-in-2022/">largely focus on the vehicles themselves</a>: low-floor buses, wheelchair ramps, priority seating, handrails and enough room to manoeuvre. But just because a vehicle is accessible doesn’t necessarily mean a bus journey is accessible. </p> <p>There are difficulties getting to and from the bus, limited frequency of accessible services, <a href="https://www.tandfonline.com/doi/full/10.1080/17450101.2022.2126794">poor driver training, passenger conflict</a>, <a href="https://www.forbes.com/sites/gusalexiou/2021/02/17/for-disabled-people-inclusive-transportation-is-about-much-more-than-lifts-and-ramps/?sh=322fc9c62b08">travel anxiety</a> and a lack of <a href="https://www.inclusivecitymaker.com/transport-accessibility-intellectual-disability/">planning for diversity</a>. In all these ways, bus travel excludes people with disabilities. </p> <div data-id="17"> </div> <p>Infrastructure alone cannot overcomes these issues. <a href="https://translink.com.au/travel-with-us/on-demand">On-demand transport</a>, which enables users to travel between any two points within a service zone whenever they want, offers potential solutions to some of these issues. It’s already <a href="https://sifted.eu/articles/viavan-on-demand-transport/">operating</a> in <a href="https://ringandride.org/">cities</a><a href="https://www.bcgomi.com/">overseas</a> and is being <a href="https://theconversation.com/1-million-rides-and-counting-on-demand-services-bring-public-transport-to-the-suburbs-132355">trialled in Australia</a>.</p> <h2>Accessible vehicles are just the start</h2> <p>Making vehicles accessible is really only the tip of the iceberg. Focusing only on infrastructure misses two key points: </p> <ol> <li> <p>our public transport journeys begin before we board the service and continue after we’ve left it</p> </li> <li> <p>accessibility means providing people with quality transport experiences, not just access to resources.</p> </li> </ol> <p>Let’s imagine a typical suburban bus journey. It is industry accepted that passengers are <a href="https://australasiantransportresearchforum.org.au/wp-content/uploads/2022/03/2013_rose_mulley_tsai_hensher.pdf">generally willing to walk about 400 metres</a> to a bus stop. That is based, of course, on the assumption that passengers are able-bodied. Long distances, steep hills, neglected pathways, few kerb cuts and poorly designed bus shelters all hinder individuals with disabilities from getting to the bus in the first place. </p> <p>This issue resurfaced in the 2020 report <a href="https://www.aihw.gov.au/getmedia/ee5ee3c2-152d-4b5f-9901-71d483b47f03/aihw-dis-72.pdf.aspx?inline=true">People with Disability in Australia</a>, by the Australian Institute of Health and Welfare. More than one in four respondents with disabilities said getting “to and from stops” was a major obstacle to using public transport. </p> <p>But other barriers to making services inclusive are even more difficult to see. People with disabilities are forced to plan extensively when to travel, how to travel, who to travel with and what resources they need to complete the journey. Even the best-laid plans involve <a href="https://www.forbes.com/sites/gusalexiou/2021/02/17/for-disabled-people-inclusive-transportation-is-about-much-more-than-lifts-and-ramps/?sh=322fc9c62b08">added emotional energy or “travel anxiety”</a>.</p> <h2>What solutions are there?</h2> <p><a href="https://theconversation.com/1-million-rides-and-counting-on-demand-services-bring-public-transport-to-the-suburbs-132355">On-demand transport</a> offers potential solutions to some of these issues. Its key feature is flexibility: users can travel between any two points within a service zone, whenever they want. </p> <p>This flexibility can be harnessed to design more inclusive bus services. Without a fixed route or timetable, on-demand services can pick up passengers at their home and drop them directly at their destination. This door-to-door service eliminates the stressful journey to and from a bus stop and their destinations. </p> <p>And with services available on demand, users can plan their travel to complement their daily activities instead of the availability of transport dictating their daily activities. </p> <p>The technology behind on-demand transport also helps reduce the need for customers to consistently restate their mobility needs. Once a customer creates a profile, extra boarding and alighting time is automatically applied to all future bookings. This eliminates the exhaustive process of added planning, and enables drivers to deliver a better experience for all of their passengers.</p> <h2>Examples of on-demand services</h2> <p>Cities around the globe are already using on-demand services to overcome transport disadvantage for people with disabilities. </p> <p>BCGo is one such service in Calhoun County, Michigan. A recent yet-to-be-published survey of BCGo users shows 51% of respondents face mobility challenges that affect their ability to travel. </p> <p>Some 30% have “conditions which make it difficult to walk more than 200 feet” (61m). That means the industry’s assumed walkable distance (400m) is 6.5 times the distance that’s realistically possible for many users of the service.</p> <p>Ring &amp; Ride West Midlands is the UK’s largest on-demand project. It operates across seven zones with over 80 vehicles. </p> <p>The service, recently digitised using <a href="https://www.liftango.com/">Liftango</a>’s technology, is designed to provide low-cost, accessible transport. It can be used for commuting, visiting friends, shopping and leisure activities. </p> <p>Ring &amp; Ride serves as an example of how on-demand service can provide sustainable and equitable transport at scale. It’s completing over 12,000 trips per month.</p> <h2>A call to action for Australian governments</h2> <p>Government policy needs to address not only inadequate bus infrastructure, but those invisible barriers that continue to exclude many people from bus travel. We need a cognitive shift to recognise accessibility is about creating quality experiences from door to destination for everyone. </p> <p>This needs to be paired with a willingness to explore solutions like on-demand transport. Transport authorities worldwide are already embracing these solutions. We cannot continue to rely on the community transport sector to absorb the responsibility of providing transport for people with disabilities, particularly as <a href="https://theconversation.com/eight-simple-changes-to-our-neighbourhoods-can-help-us-age-well-83962">our populations age</a>. </p> <p>Now is the time to have your say. The Transport Standards are <a href="https://www.infrastructure.gov.au/infrastructure-transport-vehicles/transport-accessibility/2022-review-transport-standards">open for public consultation</a> until June 2023.</p> <p><em>Image credits: Getty Images</em></p> <p><em>This article originally appeared on <a href="https://theconversation.com/how-on-demand-buses-can-transform-travel-and-daily-life-for-people-with-disabilities-199988" target="_blank" rel="noopener">The Conversation</a>. </em></p>

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"How did you live with this much pain?": Bindi Irwin hospitalised

<p dir="ltr"> Bindi Irwin has issued an emotional statement on social media after undergoing surgery for endometriosis.</p> <p dir="ltr">The beloved Australian conservationist has been battling with the condition for 10 years, and detailed in her post what it had been like to struggle with “insurmountable fatigue, pain &amp; nausea.”</p> <p dir="ltr">She confessed that she had spent a long time wondering whether or not she should share her story, but ultimately believed it to be her “responsibility” to share her story for others like her who haven’t been able to get the help they desperately need for their condition. </p> <p dir="ltr">“I’m aware of millions of women struggling with a similar story,” Bindi wrote, “there’s stigma around this awful disease. I’m sharing my story for anyone who reads this &amp; is quietly dealing with pain &amp; no answers. Let this be your validation that your pain is real &amp; you deserve help. Keep searching for answers.”</p> <p dir="ltr">According to the World Health Organisation, endometriosis - a chronic disease for which there is no known cure - affects approximately 10% of the world’s population of women, girls, and gender diverse individuals of a reproductive age (that’s roughly 190 million people). It is associated with severe pain during periods, bloating, nausea, fatigue, and even infertility. </p> <p dir="ltr">However, the symptoms can be so varied that healthcare professionals often struggle to diagnose the condition, and that many sufferers don’t know enough to put a name to it. Due to this, there are often large spans of time between first noticing symptoms, getting a formal diagnosis, and getting help. </p> <p dir="ltr">“These last 10yrs have included many tests, doctors visits, scans, etc.,” Bindi explained in her caption. “A doctor told me it was simply something you deal with as a woman &amp; I gave up entirely, trying to function through the pain.”</p> <p dir="ltr">“I decided to undergo surgery for endometriosis,” she continued, after noting that a friend had helped steer in the right direction. “Going in for surgery was scary but I knew I couldn’t live like I was. Every part of my life was getting torn apart because of the pain. </p> <p dir="ltr">“To cut a long story short, they found 37 lesions, some very deep &amp; difficult to remove, &amp; a chocolate cyst. @seckinmd’s [Bindi’s doctor] first words to me when I was in recovery were, ‘How did you live with this much pain?’”</p> <blockquote class="instagram-media" style="background: #FFF; border: 0; border-radius: 3px; box-shadow: 0 0 1px 0 rgba(0,0,0,0.5),0 1px 10px 0 rgba(0,0,0,0.15); margin: 1px; max-width: 540px; min-width: 326px; padding: 0; width: calc(100% - 2px);" data-instgrm-captioned="" data-instgrm-permalink="https://www.instagram.com/p/Cpf6o7YJ0xa/?utm_source=ig_embed&amp;utm_campaign=loading" data-instgrm-version="14"> <div style="padding: 16px;"> <div style="display: flex; flex-direction: row; align-items: center;"> <div style="background-color: #f4f4f4; border-radius: 50%; flex-grow: 0; height: 40px; margin-right: 14px; width: 40px;"> </div> <div style="display: flex; flex-direction: column; flex-grow: 1; justify-content: center;"> <div style="background-color: #f4f4f4; border-radius: 4px; flex-grow: 0; height: 14px; margin-bottom: 6px; width: 100px;"> </div> <div style="background-color: #f4f4f4; border-radius: 4px; flex-grow: 0; height: 14px; width: 60px;"> </div> </div> </div> <div style="padding: 19% 0;"> </div> <div style="display: block; height: 50px; margin: 0 auto 12px; width: 50px;"> </div> <div style="padding-top: 8px;"> <div style="color: #3897f0; font-family: Arial,sans-serif; font-size: 14px; font-style: normal; font-weight: 550; line-height: 18px;">View this post on Instagram</div> </div> <div style="padding: 12.5% 0;"> </div> <div style="display: flex; flex-direction: row; margin-bottom: 14px; align-items: center;"> <div> <div style="background-color: #f4f4f4; border-radius: 50%; height: 12.5px; width: 12.5px; transform: translateX(0px) translateY(7px);"> </div> <div style="background-color: #f4f4f4; height: 12.5px; transform: rotate(-45deg) translateX(3px) translateY(1px); width: 12.5px; flex-grow: 0; margin-right: 14px; margin-left: 2px;"> </div> <div style="background-color: #f4f4f4; border-radius: 50%; height: 12.5px; width: 12.5px; transform: translateX(9px) translateY(-18px);"> </div> </div> <div style="margin-left: 8px;"> <div style="background-color: #f4f4f4; border-radius: 50%; flex-grow: 0; height: 20px; width: 20px;"> </div> <div style="width: 0; height: 0; border-top: 2px solid transparent; border-left: 6px solid #f4f4f4; border-bottom: 2px solid transparent; transform: translateX(16px) translateY(-4px) rotate(30deg);"> </div> </div> <div style="margin-left: auto;"> <div style="width: 0px; border-top: 8px solid #F4F4F4; border-right: 8px solid transparent; transform: translateY(16px);"> </div> <div style="background-color: #f4f4f4; flex-grow: 0; height: 12px; width: 16px; transform: translateY(-4px);"> </div> <div style="width: 0; height: 0; border-top: 8px solid #F4F4F4; border-left: 8px solid transparent; transform: translateY(-4px) translateX(8px);"> </div> </div> </div> <div style="display: flex; flex-direction: column; flex-grow: 1; justify-content: center; margin-bottom: 24px;"> <div style="background-color: #f4f4f4; border-radius: 4px; flex-grow: 0; height: 14px; margin-bottom: 6px; width: 224px;"> </div> <div style="background-color: #f4f4f4; border-radius: 4px; flex-grow: 0; height: 14px; width: 144px;"> </div> </div> <p style="color: #c9c8cd; font-family: Arial,sans-serif; font-size: 14px; line-height: 17px; margin-bottom: 0; margin-top: 8px; overflow: hidden; padding: 8px 0 7px; text-align: center; text-overflow: ellipsis; white-space: nowrap;"><a style="color: #c9c8cd; font-family: Arial,sans-serif; font-size: 14px; font-style: normal; font-weight: normal; line-height: 17px; text-decoration: none;" href="https://www.instagram.com/p/Cpf6o7YJ0xa/?utm_source=ig_embed&amp;utm_campaign=loading" target="_blank" rel="noopener">A post shared by Bindi Irwin (@bindisueirwin)</a></p> </div> </blockquote> <p dir="ltr">Bindi, in true Irwin fashion, took the time to pay tribute to the support of her family and friends who had been on that journey with her for over a decade, and wrote of the “indescribable” relief at the “validation for years of pain”. </p> <p dir="ltr">“THANK YOU,” she gushed, “for encouraging me to find answers when I thought I’d never climb out. Thank you to the doctors &amp; nurses who believed my pain. I’m on the road to recovery &amp; the gratitude I feel is overwhelming. </p> <p dir="ltr">“To those questioning the cancelled plans, unanswered messages &amp; absence - I had been pouring every ounce of the energy I had left into our daughter &amp; family.</p> <p dir="ltr">“Things may look fine on the outside looking in through the window of someone’s life, however, that is not always the case. Please be gentle &amp; pause before asking me (or any woman) when we’ll be having more children. </p> <p dir="ltr">“After all that my body has gone through, I feel tremendously grateful that we have our gorgeous daughter. She feels like our family’s miracle.”</p> <p dir="ltr"><em>March is Endometriosis Awareness Month, for more information visit: </em></p> <p dir="ltr"><em><a href="https://www.endometriosisaustralia.org/">Endometriosis Australia</a></em></p> <p dir="ltr"><em><a href="https://nzendo.org.nz/2023-march-awareness-month/#:~:text=March%20is%20International%20Endometriosis%20Awareness,years%20before%20they%20are%20diagnosed.">Endometriosis New Zealand</a></em></p> <p dir="ltr"><em>Images: Instagram</em></p>

Caring

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5 hidden sugar bombs you should be aware of

<p>It seems like a pretty easy rule to follow – when you’re doing your weekly shop, if an item is packaged, it's likely laden with sugar. We all know that the sweet stuff is absolutely everywhere and that food companies use clever little tricks to disguise this from us when it comes to food labels. So, if you're not careful, sneaky foods packed with sugar will make their way into your home. Here we bring you some tips on how to arm yourself with the knowledge to avoid an accidental sugar binge.</p> <p><strong>Fruit yoghurt</strong></p> <p>It seems innocent enough, but fruit yogurt can be one of the biggest sugar bombs at the supermarket. Have you ever noticed how this popular morning snack feels like it would be more appropriately placed as a dessert option, well that’s because they are loaded with sugar. Opt for natural yoghurt and add cinnamon or berries to naturally sweeten.</p> <p><strong>Pasta sauce</strong></p> <p>Never mind the shortcomings of refined white pasta, it's the sauce that should be of concern. Pasta sauce alone can carry up to 12 grams of sugar for every half cup.</p> <p><strong>Agave</strong></p> <p>Despite it being sold in health food stores and renowned as a healthy alternative to sugar, it doesn’t change the fact that agave is pretty much just sugar dressed up in a healthier looking outfit. As it's 85 per cent fructose, it may be worse for you than cane sugar, which is all sucrose. What does this mean? Well, fructose is metabolised almost exclusively by your liver, which is hard work, and we’re still learning about the way different forms of sugar affect our health.</p> <p><strong>Dried fruit</strong></p> <p>Given it’s fruit it’s not surprising that most people count dried fruits amongst healthy food options, however, in some cases it might as well be like eating lollies. Just one-third of a cup can have 24 grams of sugar.</p> <p><strong>Granola bars</strong></p> <p>A convenient snack that is easy to carry in your bag to enjoy on the run? Yes. But the health factor of these bars depends on the ingredients. Most varieties aren't only made of wholegrain oats. In fact, one bar can pack as much as 12 grams (or much more) of sugar, so be sure to read the label before adding these to your shopping trolly.</p> <p><em>Image credits: Getty Images </em></p>

Food & Wine

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Woman slammed for asking disabled man to move on the bus

<p dir="ltr">A woman has been slammed online for asking a disabled man on a bus to move so that she and her daughter could sit together. </p> <p dir="ltr">The 32-year-old mother took to Reddit’s “<em>Am I The A**hole?</em>” platform to ask social media users if she was in the wrong. </p> <p dir="ltr">In the post, she wrote that her and her five-year-old daughter boarded the bus at a “busy stop”, noting that “there were no empty seats available, except for one near a person using a wheelchair” – who she described as a man aged about 40. </p> <p dir="ltr">“I asked the person if [he] could move [his] wheelchair to another spot so that my daughter and I could sit together, but the person declined,” she wrote. </p> <p dir="ltr">The man in the wheelchair responded to her request and said no, saying he needed the space for his “mobility device”. </p> <p dir="ltr">“I was taken aback and frustrated by his response,” she wrote. </p> <p dir="ltr">She told the man that her daughter “was very young and needed to sit next to me for safety reasons” – yet the person still “refused to move”. </p> <p dir="ltr">“I ended up having to stand for the entire ride with my daughter in tow, which was uncomfortable and tiring for both of us,” she said.</p> <p dir="ltr">The woman recalled how she told her friend about the public transport incident, to which her friend told her she was being “insensitive and ableist”. </p> <p dir="ltr">The writer’s friend told her “that the person in the wheelchair had a right to the space” he needed, and “that it was unfair” of her to ask the man in the wheelchair to move on such a crowded bus. </p> <p dir="ltr">“Now, I’m questioning whether or not I was wrong for asking the person to move,” the mother concluded her post.</p> <p dir="ltr">The post, which has racked up thousands of comments, was flooded by horrified users questioning how someone could ask a disabled person to move out of their designated space.</p> <p dir="ltr">“Imagine being so entitled that you genuinely think standing up on your perfectly good, working legs is so awful and tiring that you ask someone who is physically unable to stand to get out of your way,” one person wrote.</p> <p dir="ltr">“The five-year-old could have just stood. Seriously, when did five-year-olds become so fragile that they can’t stand for a bus trip. Parenting like this damages children. They are being taught that they are pathetic,” someone else wrote.</p> <p dir="ltr">Another person defended the mum’s insistence that her daughter be able to sit down for the bus ride. </p> <p dir="ltr">“It’s about safety. Children can easily fall in buses because they can’t reach the places to hold onto, since those are made for adults,” they wrote. </p> <p dir="ltr">But others who “used to take the bus a lot” declared that “mothers with kids are the most entitled bus users [that] exist”. </p> <p dir="ltr">“One can only hope [the woman] comes to realise how lucky she is she can even stand and walk without any trouble at all, and that the next time there are no seats on the bus, she would just suck it up for a few minutes of the ride,” one wrote.</p> <p dir="ltr"><em>Image credits: Getty Images</em></p>

Caring

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There’s a serious ethical problem with some sunscreen testing methods – and you’re probably not aware of it

<p>As summer approaches, we need to start remembering to slip on sun-protective clothing, slop on sunscreen, slap on a hat, seek shade where possible, and slide on sunglasses.</p> <p>When it comes to sunscreen, we all know we need to wear it to protect against the harmful effects of ultraviolet (UV) radiation, which can cause skin cancer.</p> <p>But what about the sun protection factor, known as the SPF rating, we see on our sunscreen bottles? It indicates the level of protection – but is it always what it says it is, and how is it actually tested?</p> <h2>Risking human health for SPF testing</h2> <p>While there have been some cases of <a href="https://www.tga.gov.au/news/news/sunscreen-testing-ama-laboratories-condition-listing">sunscreens not matching up to their SPF claims</a>, this is the exception and not the norm.</p> <p>In Australia, we can be comfortable knowing these products are tightly regulated to ensure they are safe and meet their claimed SPF rating, according to current SPF testing methods.</p> <p>However, problems arise when it comes to how sunscreens are tested for their SPF rating. Most people would not be aware that the SPF value on their sunscreen bottles is determined by testing on humans.</p> <p>Ultimately, this means we are risking people’s health to test how effective our sunscreens are – and we urgently need to change this.</p> <h2>How is sunscreen SPF tested?</h2> <p>Once a sunscreen formulation has been developed by a manufacturer it needs to go through testing to ensure it only contains approved ingredients, and ultimately, that it does what it says it does.</p> <p>All sunscreen products available in Australia are <a href="https://www.tga.gov.au/news/news/about-sunscreens">tested according to the Australian Standard to determine the SPF</a>. This is great and provides assurance of safety and quality for the consumer – but the problem is with how this testing is done.</p> <p>Currently, testing sunscreens on humans is the approved international standard to rate the UV protection level of a sunscreen. This testing involves volunteers wearing strictly defined amounts of sunscreen and being exposed to artificial solar <a href="https://www.arpansa.gov.au/understanding-radiation/what-is-radiation/non-ionising-radiation/ultraviolet-radiation">UV radiation</a>. </p> <p>Performance is measured by determining the time it takes for erythema or redness to occur. <a href="https://www.cancer.org.au/about-us/policy-and-advocacy/prevention-policy/national-cancer-prevention-policy/skin-cancer-statistics-and-issues/sunburn">This is, basically, sunburn</a>; based on this, an SPF rating is assigned.</p> <h2>Why is human testing of SPF a problem?</h2> <p>If sunscreens only contain approved ingredients we know are safe, is it really a problem they are tested on humans?</p> <p>Sadly, yes. Human testing involves exposing people to harmful UV radiation, which we know can cause skin and eye damage, <a href="https://www.arpansa.gov.au/understanding-radiation/radiation-sources/more-radiation-sources/sun-exposure">as well as being the leading cause of skin cancer</a>. This alone is <a href="https://www.phrp.com.au/wp-content/uploads/2022/03/PHRP3212205.pdf">unethical and unjustifiable</a>.</p> <p>There are also other issues associated with testing sunscreen on humans. For example, the <a href="https://onlinelibrary.wiley.com/doi/full/10.1111/phpp.12095">use of erythema to determine sunscreen effectiveness is highly subjective</a>, and may differ from one person to another, even for those with the same <a href="https://www.arpansa.gov.au/sites/default/files/legacy/pubs/RadiationProtection/FitzpatrickSkinType.pdf">skin type</a>. This makes the reliability of such testing methods questionable.</p> <p>Further, testing is only done on a small number of people (a minimum of <a href="https://www.tga.gov.au/sites/default/files/australian-regulatory-guidelines-for-sunscreens.pdf">ten people is required in Australia</a>). This is great for exposing as few people as possible to harmful UV radiation to determine a product’s SPF rating – but not so great when it comes to inclusiveness.</p> <p>Testing such a small number of people is not representative. It does not include all skin types and leads to real <a href="https://onlinelibrary.wiley.com/doi/full/10.1111/ics.12333">challenges in achieving reproducible results</a> across different laboratories testing the same product.</p> <p>The testing itself is also very expensive. This adds to the already high cost of buying sunscreens, and potentially limits manufacturers from developing new and better products.</p> <p>These, along with many other issues, highlight the urgency for non-human (in vitro) testing methods of a sunscreen’s effectiveness to be developed.</p> <h2>Human-free SPF testing technology is in development</h2> <p>While efforts have been made to develop non-human testing methods, <a href="https://www.sciencedirect.com/science/article/pii/S0165993622002072">there remain several challenges</a>. <a href="https://www.karger.com/Article/Abstract/292777">These include</a> the materials used to simulate human skin (also known as substrates), difficulties in applying the sunscreen to these substrates, reproducibility of results, and ensuring that results are the same as what we see with human testing.</p> <p>However, scientists at <a href="https://www.rmit.edu.au/">RMIT University</a>, with support from the Australian Radiation Protection and Nuclear Safety Agency (<a href="https://www.arpansa.gov.au/">ARPANSA</a>) and the <a href="https://www.cancervic.org.au/">Cancer Council Victoria</a>, are <a href="https://www.sciencedirect.com/science/article/pii/S0165993622002072">working on a solution to this problem</a>.</p> <p>So far, they have developed a prototype sensor that <a href="https://www.nature.com/articles/s41467-018-06273-3">changes colour when exposed to UV radiation</a>. This <a href="https://www.nature.com/articles/s41467-018-06273-3/figures/5">sensor</a> could be customised for human-free sunscreen testing, for example.</p> <p>Reliable in vitro testing methods will mean in the future, sunscreen manufacturers would be able to quickly make and test new and better sunscreens, without being limited by the time and cost constraints involved with human testing.</p> <p>So the next time you buy a bottle of sunscreen, look to purchase the highest-rated sunscreen of SPF 50+ – and know that work is underway on getting that rating classified in a more ethical way.</p> <p><em>Image credits: Getty Images</em></p> <p><em>This article originally appeared on <a href="https://theconversation.com/theres-a-serious-ethical-problem-with-some-sunscreen-testing-methods-and-youre-probably-not-aware-of-it-195359" target="_blank" rel="noopener">The Conversation</a>. </em></p>

Beauty & Style

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Disabled woman slams Jetstar for “extremely humiliating” treatment

<p dir="ltr">A woman has said she was humiliated at the end of her flight after Jetstar staff couldn’t provide her with a wheelchair for her, forcing her to leave the plane by crawling.</p> <p dir="ltr">Natalie Curtis has been in a wheelchair since high school but said she has never been as humiliated as she was left to crawl to her wheelchair after flying from Singapore to Bangkok.</p> <p dir="ltr">While she was provided a standard “aisle” wheelchair to board the plane, Ms Curtis was told she would have to pay to use another chair to get off the plane - a service which is usually free.</p> <p dir="ltr">“I didn’t really comprehend it and I was like, ‘No, I’m not paying to be able to get off this plane’,” Ms Curtis told <em>Sunrise</em>.</p> <p dir="ltr">With her friend Natasha Elford unable to carry her due to a knee injury, Ms Curtis crawled on the floor past eight rows until she could reach her chair.</p> <p dir="ltr">“It was extremely humiliating,” she said.</p> <p dir="ltr">Ms Elford said she was in shock while watching the ordeal and that she was “absolutely gutted”.</p> <p dir="ltr">“I was like, ‘Is this actually happening?’” she told the program on Monday.</p> <p dir="ltr">“I couldn’t physically lift her so I felt really hopeless and I couldn’t believe this was really happening.”</p> <p><span id="docs-internal-guid-5074d5cf-7fff-8dbb-d33e-bba54635ce43"></span></p> <p dir="ltr">She added that she tried to find out if a wheelchair could be fast tracked to Ms Curtis, but said the flight attendants “didn’t really try to do anything”.</p> <p dir="ltr"><iframe style="overflow: hidden; border: initial none initial;" src="https://www.facebook.com/plugins/post.php?href=https%3A%2F%2Fwww.facebook.com%2Fnatalie.hodges.50%2Fposts%2Fpfbid0ewJHd3156WaV46vd8LHJWCwLrxBQraSgSfAP1dZqcfPc47oo4WkNmCj7VWjda6Rl&amp;show_text=true&amp;width=500" width="500" height="393" frameborder="0" scrolling="no" allowfullscreen="allowfullscreen"></iframe></p> <p dir="ltr">A spokesperson for the budget airline said Jetstar had sincerely apologised to Ms Curtis and had offered her a refund and additional compensation.</p> <p dir="ltr">“We unreservedly apologise to Ms Curtis for her recent experience while travelling with us,” they said.</p> <p dir="ltr">“We are committed to providing a safe and comfortable travel experience for all our customers, including those requiring specific assistance.”</p> <p dir="ltr">The spokesperson added that Jetstar staff don’t charge for using a wheelchair, and that an inquiry into the incident had found a language barrier led to the miscommunication of a fee.</p> <p dir="ltr">“At no point was an aisle chair withheld due to a request for payment,” they said.</p> <p dir="ltr">Ms Curtis isn’t the only person to have experienced such an incident over wheelchair use, and her experience comes as disability advocates call for a complete overhaul of the treatment of passengers by airlines.</p> <p dir="ltr">In August, Brad Wszola had to be carried by his wife and a staff member over the gap between the air bridge and the Jetstar plane he was trying to board to fly from Darwin to Cairns, per <em><a href="https://www.theguardian.com/society/2022/oct/06/second-class-citizen-man-lifted-on-to-plane-as-darwin-airport-had-no-ramp-for-wheelchair-users" target="_blank" rel="noopener">The Guardian</a></em>.</p> <p dir="ltr">“Watching these people having to lift me, to bend down, Jen had to bend down below the level of the floor of the plane, bend over and grab the bottom of the aisle chair to lift me … That put myself at risk, also the staff at risk and Jenny at risk,” Mr Wszola said. </p> <p dir="ltr">“She was the one helping lift me into the plane.”</p> <p dir="ltr">Mr Wszola even encountered issues prior to leaving Darwin, with his wheelchair being sent to the baggage carousel rather than the air bridge on his arrival.</p> <p dir="ltr"><span id="docs-internal-guid-959917b9-7fff-c8f5-f194-0fd6a3ef5a8c"></span></p> <p dir="ltr">After his wife made multiple requests via email to Darwin airport and Jetstar, she was told a ramp wasn’t provided to bridge the gap as it was a low-cost airline - but a ramp has since been provided to the airport after <em>The Guardian</em> contacted Jetstar.</p> <blockquote class="twitter-tweet"> <p dir="ltr" lang="en">Just made a cute little video about how <a href="https://twitter.com/Qantas?ref_src=twsrc%5Etfw">@Qantas</a> broke my wheelchair and won’t fix it 🙃🙃🙃🙃 <a href="https://t.co/CnFXazJ1ox">pic.twitter.com/CnFXazJ1ox</a></p> <p>— Zoe Simmons | she/her (@ItbeginswithZ) <a href="https://twitter.com/ItbeginswithZ/status/1577502974796247041?ref_src=twsrc%5Etfw">October 5, 2022</a></p></blockquote> <p dir="ltr">Earlier this month, Qantas reversed its decision not to refund Zoe Simmons, whose wheelchair was damaged on a flight from Sydney to Canberaa, after she took her complaints to social media.</p> <p dir="ltr">In a column for <em><a href="https://www.news.com.au/travel/travel-advice/flights/disability-advocate-lashes-qantas-over-broken-wheelchair/news-story/72ae759ca7960ab607610c5ebd6c8bca" target="_blank" rel="noopener">news.com.au</a></em>, Simmons explained that damage to her chair brakes had left it “unusable” and was initially told Qantas wouldn’t reimburse her or repair her chair, which she needs as someone living with the nerve disorder fibromyalgia.</p> <p dir="ltr">“I am so angry that this is how wheelchair users are treated by airlines, over and over. And it’s not just Qantas: it’s a systemic issue, because the system is so very broken,” she wrote.</p> <p dir="ltr">With the airline reaching out to apologise and offering to pay for her wheelchair repairs, Simmons questioned whether she would have received such a response if she hadn’t taken matters into her own hands.</p> <p dir="ltr">“I wonder: would this resolution have occurred, had I not made a fuss about it?” she wrote.</p> <p dir="ltr">“I shouldn’t have to hope to be an exception to the norm. The norm should be that disabled people are looked after, treated well, and able to get the same resolution I’ve been able to get here.”</p> <p dir="ltr"><span id="docs-internal-guid-650b6358-7fff-1acf-83b2-095ff2b36a84"></span></p> <p dir="ltr"><em>Image: Sunrise</em></p>

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"I am devastated": Disabled boy's modified tricycle stolen

<p>A tricycle that has been modified to service a child with severe disabilities has been stolen from his front yard, just days after he received it.</p> <p>Mayer Dow, a 12-year-old boy who lives with Coffin-Lowry Syndrome, had waited years for the custom-designed piece of equipment, only for it to be stolen from his place in Melbourne.</p> <p>"I am devastated," Mayer's mother Rosalie told <a href="https://www.9news.com.au/national/boy-with-disability-has-specially-built-tricycle-stolen-melbourne/d34cd40d-00e5-453c-b65d-9a6a80319c9d" target="_blank" rel="noopener">9News</a>.</p> <p>"I really don't understand. I understand desperate people do desperate things."</p> <p>The tricycle was specifically designed for Mayer's special needs, as using it is the only exercise he gets aside from using his walking frame.</p> <p>Rosalie said it took years of special requests and paperwork to get him the trike, making it useless to the thieves as it has been heavily customised to meet Mayer's needs.</p> <p>After being diagnosed with Coffin-Lowry Syndrome, a rare disorder which affects his intellectual and physical development, Mayer was unable to take part in simple childhood activities like riding a bike, until he received his tailor-made tricycle. </p> <p>"He is extremely excited because he's seen other people riding a bike and he's never had the capacity," Rosalie said.</p> <p>The devastated mother said she simply wants the tricycle returned, as the theft has been reported to Victoria Police.</p> <p><em>Image credits: 9News</em></p>

Caring

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"Kick cancer's ass": Ryan Reynolds shares potentially life saving surgery

<p>Ryan Reynolds shared the news he had a “subtle polyp” on his colon during his first colonoscopy.</p> <p>He broadcasted the entire experience in order to destigmatise the procedure and raise awareness, especially among men.</p> <p>The famed actor, aged 45, and his Wrexham soccer club co-chairman, Rob McElhenney, decided to partner up with <a href="https://leadfrombehind.org/" target="_blank" rel="noopener">Lead From Behind</a>, a colon cancer awareness organisation, aiming to draw attention to the procedure.</p> <p>In a Youtube video posted to Reynold’s page this week, the two explained they wanted to prove how the “simple step” can “save lives.”</p> <p><iframe title="YouTube video player" src="https://www.youtube.com/embed/5sXkIUZEWIo" width="560" height="315" frameborder="0" allowfullscreen="allowfullscreen"></iframe></p> <p>“I would never normally have any medical procedure put on camera and then shared,” Reynolds said.</p> <p>“But it’s not every day that you can raise awareness about something that will most definitely save lives. That’s enough motivation for me to let you in on a camera being shoved up my ass.”</p> <p>During the procedure, Reynolds found out that he found an “extremely subtle polyp” on the right side of his colon, which he had removed.</p> <p>“This was potentially lifesaving for you — I’m not kidding, I’m not being overly dramatic,” the doctor told the actor as he showed off images of the tissue. “This is exactly why you do this. You had no symptoms.”</p> <p>As for McElhenney, his doctor revealed they found three polyps that “were not a big deal, but certainly a good thing that we found them early and removed them.”</p> <p>“Colon cancer is preventable,” a message read across a black screen at the end of the video. “If you’re 45 years or older, ask your doctor about getting a colonoscopy. And help Rob and Ryan kick cancer’s ass.”</p> <p><em>Image: Youtube</em></p>

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Having ‘good’ posture doesn’t prevent back pain, and ‘bad’ posture doesn’t cause it

<p>Back pain is the leading cause of <a href="https://pubmed.ncbi.nlm.nih.gov/24665116/" target="_blank" rel="noopener">disability</a> worldwide. Most people experience an episode of back pain in their lifetime. It often emerges during <a href="https://pubmed.ncbi.nlm.nih.gov/29112007/" target="_blank" rel="noopener">adolescence</a> and becomes more common in adults.</p> <p>For <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5771685/" target="_blank" rel="noopener">25%</a> of people who develop back pain, it can become persistent, disabling and distressing. It can affect a person’s ability to participate in activities of <a href="https://pubmed.ncbi.nlm.nih.gov/31369481/" target="_blank" rel="noopener">daily living, physical activity and work</a>. Activities such as sitting, standing, bending and lifting frequently aggravate back pain.</p> <p>There is a common belief that “good” posture is important to protect the spine from damage, as well as prevent and treat back pain. Good posture is commonly defined as sitting “upright”, standing “tall and aligned”, and lifting with a squat technique and “straight back”.</p> <p>Conversely, “slump” sitting, “slouch” standing and lifting with a “round back” or stooped posture are frequently warned against. This view is widely held by people <a href="https://pubmed.ncbi.nlm.nih.gov/23806489/" target="_blank" rel="noopener">with and without back pain</a>, as well as clinicians in both <a href="https://pubmed.ncbi.nlm.nih.gov/30553985/" target="_blank" rel="noopener">occupational health and primary care</a> settings.</p> <p>Surprisingly, there is a lack of evidence for a strong relationship between “good” posture and back pain. Perceptions of “good” posture originate from a combination of social desirability and unfounded presumptions.</p> <p>Systematic reviews (studies looking at a number of studies in one area) have found <a href="https://pubmed.ncbi.nlm.nih.gov/20360197/" target="_blank" rel="noopener">ergonomic interventions</a> for workers, and advice for manual workers on the <a href="https://pubmed.ncbi.nlm.nih.gov/19734238/" target="_blank" rel="noopener">best posture for lifting</a>, have not reduced work-related back pain.</p> <h2>Sitting and standing posture</h2> <p>Our group has conducted several studies exploring the relationship between spine posture and back pain. We investigated whether “slump” sitting or “non-neutral” standing postures (overarching or slouching the back, for example), in a large population of adolescents, were <a href="https://pubmed.ncbi.nlm.nih.gov/21350031/%20https://pubmed.ncbi.nlm.nih.gov/18758367/" target="_blank" rel="noopener">associated with</a>, or <a href="https://pubmed.ncbi.nlm.nih.gov/28915771/" target="_blank" rel="noopener">predicted</a> future back pain. We found little support for this view.</p> <p>These findings are consistent with systematic reviews that have found no consistent differences in <a href="https://pubmed.ncbi.nlm.nih.gov/31451200/" target="_blank" rel="noopener">sitting</a> or <a href="https://pubmed.ncbi.nlm.nih.gov/25012528/" target="_blank" rel="noopener">standing</a> posture between adult populations with and without back pain.</p> <p>People adopt a range of different spine postures, and no single posture <a href="https://pubmed.ncbi.nlm.nih.gov/31366294/" target="_blank" rel="noopener">protects a person from back pain</a>. People with both slumped and upright postures can experience <a href="https://pubmed.ncbi.nlm.nih.gov/16540876/" target="_blank" rel="noopener">back pain</a>.</p> <h2>Lifting posture</h2> <p>Globally accepted occupational health practices about “good” or safe back postures during lifting also lack evidence. Our systematic review found no evidence lifting with a <a href="https://pubmed.ncbi.nlm.nih.gov/31775556/" target="_blank" rel="noopener">round-back posture</a> is associated with or predictive of back pain.</p> <p>Our <a href="https://pubmed.ncbi.nlm.nih.gov/34288926/" target="_blank" rel="noopener">recent lab study</a> found people without back pain, employed in manual work for more than five years, were more likely to lift with a more stooped, round-back posture.</p> <p>In comparison, manual workers with back pain tended to adopt more of a squat lift with a <a href="https://pubmed.ncbi.nlm.nih.gov/34288926/" target="_blank" rel="noopener">straighter back</a>.</p> <p>In other words, people with back pain tend to <a href="https://pubmed.ncbi.nlm.nih.gov/31730537/" target="_blank" rel="noopener">follow “good” posture advice</a>, but people who don’t lift in the “good” way don’t have more back pain.</p> <p>In a small study, as people with disabling back pain recovered, they became <a href="https://pubmed.ncbi.nlm.nih.gov/32621351/" target="_blank" rel="noopener">less protective</a> and generally moved away from the “good” posture advice.</p> <h2>If not posture – what else?</h2> <p>There is no evidence for a single “good posture” to prevent or reduce back pain. People’s spines come in all shapes and sizes, so posture is highly individual. Movement is important for back health, so learning to <a href="https://pubmed.ncbi.nlm.nih.gov/31366294/" target="_blank" rel="noopener">vary and adopt different postures</a> that are comfortable is likely to be more helpful than rigidly adhering to a specific “good” posture.</p> <p>While back pain can be intense and distressing, for most people (90%) back pain is not associated with identifiable <a href="https://pubmed.ncbi.nlm.nih.gov/27745712/" target="_blank" rel="noopener">tissue damage or pathology</a>. Back pain can be like a sprain related to awkward, sudden, heavy or unaccustomed loads on our <a href="https://pubmed.ncbi.nlm.nih.gov/25665074/" target="_blank" rel="noopener">back</a>, but can also occur like a bad headache where there is no injury.</p> <p>Importantly, people are more vulnerable to back pain when their health is compromised, such as if someone is:</p> <ul> <li> <p>feeling <a href="https://pubmed.ncbi.nlm.nih.gov/20393261/" target="_blank" rel="noopener">stressed</a></p> </li> <li> <p>experiencing low mood</p> </li> <li> <p><a href="https://pubmed.ncbi.nlm.nih.gov/25665074/" target="_blank" rel="noopener">tired or fatigued</a></p> </li> <li> <p><a href="https://pubmed.ncbi.nlm.nih.gov/16741460/" target="_blank" rel="noopener">sleeping poorly</a></p> </li> <li> <p>being less active.</p> </li> </ul> <p>Back pain is more likely to persist if a person:</p> <ul> <li> <p>becomes overly <a href="https://pubmed.ncbi.nlm.nih.gov/12446259/" target="_blank" rel="noopener">worried and fearful</a> about their back pain</p> </li> <li> <p><a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5771685/" target="_blank" rel="noopener">overprotects their back</a> and avoids movement, physical activity, work and social engagement.</p> </li> </ul> <h2>What can people do about back pain?</h2> <p>In a small group (1-5%), <a href="https://pubmed.ncbi.nlm.nih.gov/27745712" target="_blank" rel="noopener">back pain</a> can be caused by pathology including a fracture, malignancy, infection or nerve compression (the latter is associated with leg pain, and a loss of muscle power and sensation). In these cases, seek medical care.</p> <p>For most people (90%), back pain is associated with sensitisation of the back structures, but not identifiable tissue damage.</p> <p>In this situation, too much focus on maintaining “good” posture can be a distraction from other factors known to be important for spine health.</p> <p>These include:</p> <ul> <li> <p>moving and relaxing your back</p> </li> <li> <p>engaging in regular physical activity of your preference</p> </li> <li> <p>building confidence and keeping fit and strong for usual daily tasks</p> </li> <li> <p>maintaining healthy sleep habits and body weight</p> </li> <li> <p>caring for your general <a href="https://pubmed.ncbi.nlm.nih.gov/31892534/" target="_blank" rel="noopener">physical and mental health</a>.</p> </li> </ul> <p>Sometimes this requires some support and coaching with a skilled clinician.</p> <p>So if you are sitting or standing, find comfortable, relaxed postures and vary them. If you are lifting, the <a href="https://pubmed.ncbi.nlm.nih.gov/34288926/" target="_blank" rel="noopener">current evidence</a> suggests it’s OK to lift naturally – even with a round back. But make sure you are fit and strong enough for the task, and care for your overall health.</p> <p><strong>This article originally appeared on <a href="https://theconversation.com/having-good-posture-doesnt-prevent-back-pain-and-bad-posture-doesnt-cause-it-183732" target="_blank" rel="noopener">The Conversation</a>.</strong></p> <p><em>Image: Shutterstock</em></p>

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Not just ramps and doorways – disability housing is about choosing where, how and who you live with

<p>Home ownership among young people is falling sharply, while renters face worrying insecurity. Nowhere is this more pronounced than for the 4.4 million Australians living with a disability and, in particular, the 660,000 plus Australians with an intellectual disability.</p> <p>For the majority of these people, owning a home is impossible without financial support from their families. With the loss of this support, they can find themselves in <a href="https://theconversation.com/the-forgotten-660-000-locked-out-of-home-ownership-74926" target="_blank" rel="noopener">precarious or even abusive situations</a>. Stuck in a cycle of temporary accommodation or forced into group homes (or even nursing homes) <a href="https://disability.royalcommission.gov.au/system/files/202203/Overview%20of%20responses%20to%20the%20Group%20homes%20Issues%20paper.pdf" target="_blank" rel="noopener">with little control</a> over where and who they live with.</p> <p>If the entire premise of the National Disability Insurance Scheme (NDIS) is to give people more choice and autonomy over their lives, then that must extend to people’s fundamental needs for appropriate housing. To uphold the <a href="https://accessandinclusionindex.com.au/" target="_blank" rel="noopener">access and inclusion</a> rights of people with a disability, their housing needs must be a priority.</p> <p>One alternative gaining traction in Australia is the <a href="https://buildinglifeskills.org/" target="_blank" rel="noopener">co-design, co-living model</a> which could offer a range of benefits for people living with a disability.</p> <p><strong>Living at the end of the road</strong></p> <p>People in Australia living with a disability have <a href="https://theconversation.com/we-cant-just-leave-it-to-the-ndis-to-create-cities-that-work-to-include-people-with-disability-93419" target="_blank" rel="noopener">less access</a> to services, social activities, and green spaces compared to people without a disability.</p> <p>Over the last decade, market-driven approaches to disability housing in Australia have favoured cost effectiveness and replication, leading to <a href="https://link.springer.com/article/10.1007/s10901-016-9499-0" target="_blank" rel="noopener">limited design diversity, innovation and choice</a>.</p> <p>At a planning level, this has produced <a href="https://www.researchgate.net/publication/272366148_Movement_on_Shifting_Sands_Deinstitutionalisation_and_People_with_Intellectual_Disability_in_Australia_1974-2014%20&amp;%20https://www.un.org/development/desa/disabilities/resources/disability-accessibility-and-sustainable-urban-development.html" target="_blank" rel="noopener">socially isolated dwellings</a> with inadequate consideration of mobility, access to nature, and access to community spaces and services.</p> <p>We know the built environment around us can have <a href="https://www.aihw.gov.au/reports/australias-health/built-environment-and-health" target="_blank" rel="noopener">positive and negative effects on our health</a> – from determining activity levels, to food access, to our contact with nature and social spaces. It also affects the air we breathe, water we drink and shelter from the elements.</p> <p>Residents of highly green neighbourhoods, for instance, have <a href="https://www.researchgate.net/publication/5420708_Associations_of_neighbourhood_greenness_with_physical_and_mental_health_Do_walking_social_coherence_and_local_social_interaction_explain_the_relationships" target="_blank" rel="noopener">1.37 and 1.6 times greater odds</a> of better physical and mental health than those who perceive their neighbourhood as less green.</p> <p><strong>Profit-driven design</strong></p> <p>In general, commercial housing developments are not accessible. Designs are driven by costs and wide scale trends.</p> <p>When required, housing may meet the minimum accessibility requirements but almost never considers the end-user needs. This can create inappropriate environments, which then <a href="https://www.researchgate.net/publication/275226130_The_Provision_of_Visitable_Housing_in_Australia_Down_to_the_Detail" target="_blank" rel="noopener">require modification</a> for individuals – a wasteful and costly approach.</p> <p>Even housing with the express design purpose of being accessible can fail. A recent survey found <a href="https://www.researchgate.net/publication/275226130_The_Provision_of_Visitable_Housing_in_Australia_Down_to_the_Detail" target="_blank" rel="noopener">only 44% of accessible housing</a> complied with the <a href="https://livablehousingaustralia.org.au/design-guidelines/" target="_blank" rel="noopener">Liveable Housing Design Guidelines</a>.</p> <p>Conversely, when we focus on <a href="https://www.tandfonline.com/doi/full/10.1080/09638288.2022.2060343" target="_blank" rel="noopener">successful housing projects</a> for people living with a disability, we see common architectural features: inviting communal spaces; private individual dwellings; commercial opportunities for residents; and on-site support.</p> <p>Well-designed buildings “speak” to their environments too – be it the footpath or the grove – and <a href="https://www.cambridge.org/core/journals/arq-architectural-research-quarterly/article/abs/sustainable-community-and-environment-in-tropical-singapore-highrise-housing-the-case-of-bedok-court-condominium/E65ABF71130F6881C1904F651C1DDA4F" target="_blank" rel="noopener">foster community</a> connection.</p> <blockquote class="twitter-tweet"> <p dir="ltr" lang="en">We look forward to working with <a href="https://twitter.com/billshortenmp?ref_src=twsrc%5Etfw">@billshortenmp</a> and <a href="https://twitter.com/AustralianLabor?ref_src=twsrc%5Etfw">@AustralianLabor</a> to get <a href="https://twitter.com/hashtag/NDIS?src=hash&amp;ref_src=twsrc%5Etfw">#NDIS</a> participants the housing they need, when they need it. That means faster, accurate decisions on housing and support.</p> <p>Australians with <a href="https://twitter.com/hashtag/disability?src=hash&amp;ref_src=twsrc%5Etfw">#disability</a> deserve the security of living in their own home. <a href="https://t.co/47TULoiptM">pic.twitter.com/47TULoiptM</a></p> <p>— Summer Foundation (@SummerFoundtn) <a href="https://twitter.com/SummerFoundtn/status/1537601252116381699?ref_src=twsrc%5Etfw">June 17, 2022</a></p></blockquote> <p><strong>Could co-housing be the answer?</strong></p> <p>Many recipients of the NDIS would <a href="https://theconversation.com/ndis-needs-the-market-to-help-make-up-at-least-60-shortfall-in-specialist-disability-housing-93479" target="_blank" rel="noopener">like to live independently</a> in their own home but with easy access to onsite support.</p> <p>A connected model could be the answer. <a href="https://link.springer.com/article/10.1007/s10901-016-9499-0" target="_blank" rel="noopener">Co-housing</a> is the idea of semi-communal living that includes shared facilities and public space, self-governance, and design input from potential residents.</p> <p>Studies show how health and well-being is improved by living in deliberate and dedicated co-housing. This may be explained by <a href="https://www.semanticscholar.org/paper/Exploring-the-relationship-between-social-and-Wardle/b4b89ebee41b03434bf2df234930d9e705679b1c" target="_blank" rel="noopener">greater social inclusion and less loneliness</a>.</p> <p>People in co-housing also have reduced care needs compared to those living in conventional circumstances – <a href="https://link.springer.com/content/pdf/10.17269/s41997-018-0163-1.pdf" target="_blank" rel="noopener">13% of residents compared to 22%</a>, a gap which widens significantly with age. More research is needed, but there also seems to be a link between less <a href="https://www.researchgate.net/publication/263247830_Community_and_Civil_Society_Returns_of_Multi-generation_Cohousing_in_Germany" target="_blank" rel="noopener">chronic disease and lower impairment</a> and co-housing.</p> <blockquote class="twitter-tweet"> <p dir="ltr" lang="en">One in four Americans has a serious cognitive or physical disability. Could co-housing change their lives forever? <a href="https://t.co/S0og5JTALe">https://t.co/S0og5JTALe</a> <a href="https://t.co/dMVCCjEUm4">pic.twitter.com/dMVCCjEUm4</a></p> <p>— Reasons to be Cheerful (@RTB_Cheerful) <a href="https://twitter.com/RTB_Cheerful/status/1304801963645730818?ref_src=twsrc%5Etfw">September 12, 2020</a></p></blockquote> <p><strong>These ideas in practice</strong></p> <p>We were involved as designers of a proposed co-housing project in Perth’s south-east in Western Australia. The idea was instigated by the clients and families of <a href="https://buildingfriendships.com.au/" target="_blank" rel="noopener">Building Friendships</a>, a disability service provider that facilitates social outings and short trips to assist with developing life skills through community interactions.</p> <p>The project uses co-site selection and co-design sessions with end-users to create better design outcomes and <a href="https://www.researchgate.net/publication/262690855_Transformational_Practices_in_Cohousing_Enhancing_Residents'_Connection_to_Community_and_Nature" target="_blank" rel="noopener">build social capital</a> from the beginning.</p> <figure class="align-center zoomable"><a href="https://images.theconversation.com/files/465305/original/file-20220525-13-lxxvsu.jpg?ixlib=rb-1.1.0&amp;q=45&amp;auto=format&amp;w=1000&amp;fit=clip"><img src="https://images.theconversation.com/files/465305/original/file-20220525-13-lxxvsu.jpg?ixlib=rb-1.1.0&amp;q=45&amp;auto=format&amp;w=754&amp;fit=clip" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px" srcset="https://images.theconversation.com/files/465305/original/file-20220525-13-lxxvsu.jpg?ixlib=rb-1.1.0&amp;q=45&amp;auto=format&amp;w=600&amp;h=350&amp;fit=crop&amp;dpr=1 600w, https://images.theconversation.com/files/465305/original/file-20220525-13-lxxvsu.jpg?ixlib=rb-1.1.0&amp;q=30&amp;auto=format&amp;w=600&amp;h=350&amp;fit=crop&amp;dpr=2 1200w, https://images.theconversation.com/files/465305/original/file-20220525-13-lxxvsu.jpg?ixlib=rb-1.1.0&amp;q=15&amp;auto=format&amp;w=600&amp;h=350&amp;fit=crop&amp;dpr=3 1800w, https://images.theconversation.com/files/465305/original/file-20220525-13-lxxvsu.jpg?ixlib=rb-1.1.0&amp;q=45&amp;auto=format&amp;w=754&amp;h=440&amp;fit=crop&amp;dpr=1 754w, https://images.theconversation.com/files/465305/original/file-20220525-13-lxxvsu.jpg?ixlib=rb-1.1.0&amp;q=30&amp;auto=format&amp;w=754&amp;h=440&amp;fit=crop&amp;dpr=2 1508w, https://images.theconversation.com/files/465305/original/file-20220525-13-lxxvsu.jpg?ixlib=rb-1.1.0&amp;q=15&amp;auto=format&amp;w=754&amp;h=440&amp;fit=crop&amp;dpr=3 2262w" alt="artist's image of proposed housing development with trees around" /></a><figcaption><span class="caption">The Perth project is based on a co-housing model.</span> <span class="attribution">Author provided</span></figcaption></figure> <p>The design includes 20 private pod houses with a central hub where residents gather, cook, socialise, and learn new skills including gardening in an existing and successful veggie growing enterprise. There are also on-site support services.</p> <p>The project draws inspiration from domestic projects such as <a href="https://www.archdaily.com/625274/walumba-elders-centre-iredale-pedersen-hook-architects" target="_blank" rel="noopener">Walumba Elders Centre</a> in Warman, WA, and international examples such as the <a href="https://www.archdaily.com/981031/group-home-on-hilltop-sogo-aud?ad_source=search&amp;ad_medium=projects_tab" target="_blank" rel="noopener">Group Home on Hilltop</a> in Hachioji, Japan.</p> <p>At the heart of these examples lies good locations, good buildings, and opportunities to live alongside others: community, amenity and quality of space. This shouldn’t really be unusual or remarkable. Fundamental to this approach is simply raising the bar for people living with a disability to that of everyone else.<img style="border: none !important; box-shadow: none !important; margin: 0 !important; max-height: 1px !important; max-width: 1px !important; min-height: 1px !important; min-width: 1px !important; opacity: 0 !important; outline: none !important; padding: 0 !important;" src="https://counter.theconversation.com/content/183523/count.gif?distributor=republish-lightbox-basic" alt="The Conversation" width="1" height="1" /></p> <p><em><a href="https://theconversation.com/profiles/robert-cameron-1328562" target="_blank" rel="noopener">Robert Cameron</a>, Associate Lecturer/Researcher, <a href="https://theconversation.com/institutions/the-university-of-western-australia-1067" target="_blank" rel="noopener">The University of Western Australia</a>; <a href="https://theconversation.com/profiles/daniel-jan-martin-1349031" target="_blank" rel="noopener">Daniel Jan Martin</a>, , <a href="https://theconversation.com/institutions/the-university-of-western-australia-1067" target="_blank" rel="noopener">The University of Western Australia</a>, and <a href="https://theconversation.com/profiles/emily-van-eyk-1349999">Emily Van Eyk</a>, Lecturer &amp; Architect, <a href="https://theconversation.com/institutions/the-university-of-western-australia-1067" target="_blank" rel="noopener">The University of Western Australia</a></em></p> <p><em>This article is republished from <a href="https://theconversation.com" target="_blank" rel="noopener">The Conversation</a> under a Creative Commons license. Read the <a href="https://theconversation.com/not-just-ramps-and-doorways-disability-housing-is-about-choosing-where-how-and-who-you-live-with-183523" target="_blank" rel="noopener">original article</a>.</em></p> <p><em>Image: Getty Images</em></p>

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DJ slammed for playing offensive song to disabled prom queen

<p>A DJ has faced major backlash online after playing Ed Sheeran’s hit single “thinking out loud” as a handicapped prom queen took to the dance floor in her wheelchair.</p> <p>The opening line of the song being “when your legs don’t work like they used to before” was played for Sarah – who was in her wheelchair set to dance with the prom king. Things certainly turned awkward as those in the crowd gasped.</p> <p>Sarah Mendenhall, 23, suffers from a rare neurological condition called Acute Flaccid Myelitis (AFM), which causes muscle weakness and sometimes paralysis, was crowned as prom queen at her school dance when the unfortunate incident took place.</p> <p>A video posted to TikTok by classmate Celeste Orozco showed the two standing in the center of the dance floor while someone placed crowns on their heads; but when the song came on, many people at the event became uncomfortable.</p> <p>Numerous onlookers in the crowd showed their discomfort by letting out gasps and yelling at the DJ, whose identity remains unknown.</p> <p>'This would haunt me the rest of my life if I were the DJ,' Celeste captioned the clip, which has been viewed more than 17 million times.</p> <blockquote class="tiktok-embed" style="max-width: 605px; min-width: 325px;" cite="https://www.tiktok.com/@celesteiliana__/video/7114819205861608747" data-video-id="7114819205861608747"> <section><a title="@celesteiliana__" href="https://www.tiktok.com/@celesteiliana__" target="_blank" rel="noopener">@celesteiliana__</a> a prom queen crowning moment to remember <a title="fyp" href="https://www.tiktok.com/tag/fyp" target="_blank" rel="noopener">#fyp</a> <a title="foryoupage" href="https://www.tiktok.com/tag/foryoupage" target="_blank" rel="noopener">#foryoupage</a> <a title="highschool" href="https://www.tiktok.com/tag/highschool" target="_blank" rel="noopener">#highschool</a> <a title="promqueen" href="https://www.tiktok.com/tag/promqueen" target="_blank" rel="noopener">#promqueen</a> <a title="♬ original sound - Celeste Orozco" href="https://www.tiktok.com/music/original-sound-7114819186958715694" target="_blank" rel="noopener">♬ original sound - Celeste Orozco</a></section> </blockquote> <p>However, Sarah wants everyone to know that she wasn't offended by the song choice.</p> <p>'Hey everyone so this is me,' she wrote in the comment section of the viral clip. 'I found it really funny and ironic.'</p> <p>She added that she 'didn’t know what was playing until way after' because she was so focused on trying to 'dance.'</p> <p>Celeste added, 'We had a great prom night and a good laugh about it the next day.'</p> <p>It appeared that Sarah, who was diagnosed with the autoimmune disease in October 2016, had an amazing night despite the mishap, posting a clip of herself spinning around in the wheelchair on the dance floor to her own TikTok account, writing, 'Just making a core memory. Thats all.'</p> <p><em>Images: TikTok</em></p>

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Rare personal message from Prince William and Kate for Dame Deborah

<p>Prince William and Kate have shared a heart-warming personal message on Twitter <a href="https://www.oversixty.co.nz/news/news/vale-dame-deborah" target="_blank" rel="noopener">following the death</a> of cancer campaigner Dame Deborah James.</p> <p>"We are so sad to hear the heartbreaking news about Dame Deborah, our thoughts are with her children, her family and her loved ones. Deborah was an inspirational and unfalteringly brave woman whose legacy will live on. W &amp; C"</p> <p>The note was signed off with the couple's initials, marking that it was personally written by William and Catherine.</p> <blockquote class="twitter-tweet"> <p dir="ltr" lang="en">We are so sad to hear the heartbreaking news about Dame Deborah. Our thoughts are with her children, her family and her loved ones. </p> <p>Deborah was an inspirational and unfalteringly brave woman whose legacy will live on. W &amp; C</p> <p>— The Duke and Duchess of Cambridge (@KensingtonRoyal) <a href="https://twitter.com/KensingtonRoyal/status/1542069827971551234?ref_src=twsrc%5Etfw">June 29, 2022</a></p></blockquote> <p>Deborah James, popular British media personality, has lost her battle with bowel cancer, dying at the age of 40.</p> <p>The mother-of-two and podcaster who raised millions of dollars for charity, "passed away peacefully" at home where she had been receiving hospice care, her family has announced.</p> <p>She received huge attention for detailing her five-year fight with terminal bowel cancer on the popular BBC podcast You, Me and the Big C.</p> <p>She stepped away from her career as a deputy headteacher and began blogging about her diagnosis under the name Bowel Babe in 2017.</p> <p>Dame Deborah went on to become a columnist for The Sun and released a book, F**k You Cancer: How to Face the Big C, Live Your Life and Still Be Yourself.</p> <p>Her fundraiser, the Bowelbabe Fund, has seen more than $12 million raised for bowel cancer. Soon after the fund's launch, Dame Deborah received a damehood from the Queen with Prince William personally delivering the honour at her parents' home.</p> <p>The Duke and Duchess of Cambridge praised her fundraising achievement saying in a tweet: "Every now and then, someone captures the heart of the nation with their zest for life &amp; tenacious desire to give back to society. @bowelbabe is one of those special people."</p> <p>In a statement shared, Dame Deborah's family said: "We are deeply saddened to announce the death of Dame Deborah James; the most amazing wife, daughter, sister, mummy. Deborah passed away peacefully, surrounded by her family.</p> <p><em>Images: Instagram</em></p>

Caring

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Partially paralysed man uses mind control to feed himself

<p dir="ltr">A partially paralysed man has been able to feed himself - and use his fingers for the first time in 30 years - thanks to recent advances in neural science, software and robotics.</p> <p dir="ltr">Equipped with two robotic arms, one with a fork and the other with a knife, the man was able to make subtle movements with his fists to certain prompts from a computerised voice, such as “select cut location”, to direct the arms to cut a bite-sized piece of cake in front of him.</p> <p dir="ltr">With another subtle gesture at the command, “moving food to mouth”, the fork was aligned with his mouth.</p> <p dir="ltr">In less than 90 seconds, the man, who has very limited upper body mobility, fed himself some cake using his mind and some robotic hands.</p> <p dir="ltr">To make it all happen, a team of scientists from John Hopkins Applied Physics Laboratory (APL) and the Department of Physical Medicine and Rehabilitation (PMR) at the John Hopkins School of Medicine developed a brain-machine interface (BMI) that allows for direct communication between the brain and a computer.</p> <p dir="ltr">The computer decodes neural signals and ‘translates’ them to perform various functions, such as controlling robotic prosthetic arms.</p> <p dir="ltr">It is the culmination of more than 15 years of research between the two groups as part of the Revolutionising Prosthetics program, allowing a person to manoeuvre a pair of prosthetic arms with minimal mental input.</p> <p dir="ltr">“This shared control approach is intended to leverage the intrinsic capabilities of the brain machine interface and the robotic system, creating a ‘best of both worlds’ environment where the user can personalise the behaviour of a smart prosthesis,” said Dr Francesco Tenore, a senior project manager in APL’s Research and Exploratory Development Department. </p> <p dir="ltr">“Although our results are preliminary, we are excited about giving users with limited capability a true sense of control over increasingly intelligent assistive machines.”</p> <p dir="ltr">Their findings, published in the journal<em><a href="https://www.frontiersin.org/articles/10.3389/fnbot.2022.918001/full" target="_blank" rel="noopener"> Frontiers in Neurology</a></em>, also shows how robotics can be used to help people with disabilities.</p> <p dir="ltr">“In order for robots to perform human-like tasks for people with reduced functionality, they will require human-like dexterity. Human-like dexterity requires complex control of a complex robot skeleton,” Dr David Handelman, the paper’s first author and a senior roboticist at APL, explained. “Our goal is to make it easy for the user to control the few things that matter most for specific tasks.”</p> <p dir="ltr">Dr Pablo Celnik, the project’s principal investigator from PMR, said: “The human-machine interaction demonstrated in this project denotes the potential capabilities that can be developed to help people with disabilities.”</p> <p><span id="docs-internal-guid-73e65ccc-7fff-1f7e-0bc1-2f54f74c1365"></span></p> <p dir="ltr">To see the robot in action, head <a href="https://drive.google.com/file/d/1gAVyIyZAB5AtFp5kXntcw0Cs2Krp8XaJ/view" target="_blank" rel="noopener">here</a>.</p> <p dir="ltr"><em>Image: John Hopkins University APL</em></p>

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