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Good design lies at the heart of normalising disability – NZ’s new Ministry for Disabled People must make it a priority

<p>While working as a nurse in a busy hospital I began to use a magnifying glass, as I could no longer read the small print on medication vials. I regarded this adaptation as a part of my professional responsibility to keep patients safe.</p> <p>Others didn’t see it the same way. I was asked to stop using the magnifying glass because it apparently reduced public trust in the care I provided patients and families.</p> <p>This is just one personal example of how those with a disability are often forced to confront negative language, values and beliefs to engage with the world personally and professionally.</p> <p>This goes right to conventional definitions of the word “disability” itself, which stem from a medical model that promotes the disability over the person, manifesting in the kinds of attitudes I and many others encounter in everyday life.</p> <p><img src="https://images.theconversation.com/files/432072/original/file-20211115-27-1l55r4p.jpg?ixlib=rb-1.1.0&amp;q=45&amp;auto=format&amp;w=754&amp;fit=clip" alt="" /> <span class="caption">Minister for Disability Issues Carmel Sepuloni says the new ministry will ‘replace a fragmented system where there is no single agency responsible’.</span> <span class="attribution"><span class="source">GettyImages</span></span></p> <h2>Shifting attitudes</h2> <p>Historically, disability was identified as an individual health problem, rendering invisible the variety and normality of living with a disability. So the creation of a <a href="https://www.rnz.co.nz/news/political/454501/government-announces-new-ministry-for-disabled-people-and-accessibility-law">Ministry for Disabled People</a>, and the principles set out in the <a href="https://www.msd.govt.nz/about-msd-and-our-work/publications-resources/information-releases/cabinet-papers/2021/accelerating-accessiblity/accelerating-accessibility-in-new-zealand-october.html">Accelerating Accessibility in New Zealand</a> cabinet paper, offer a unique opportunity for progress.</p> <p>The new ministry aims to place disability alongside gender, age and ethnicity in terms of state representation. It should help raise the profile of disabled people while normalising their need for access to things others take for granted.</p> <p>But while the ministry can potentially change the narratives around disability at a structural level, the challenge will be in shifting societal and individual attitudes.</p> <p>As <a href="https://workbridge.co.nz/">Workbridge</a> CEO Jonathan Mosen has stressed, disabled people face an employment crisis due to their low “visibility” in the community and consequently low societal expectations that in turn reduce their opportunities.</p> <h2>Better design for disability</h2> <p>Improving visibility and accessibility at a practical level will depend to a large extent on good design. Take the <a href="https://www.health.govt.nz/our-work/diseases-and-conditions/covid-19-novel-coronavirus/covid-19-resources-and-tools/nz-covid-tracer-app">NZ COVID Tracer app</a>, for example, where accessibility relies on the environment in which it’s used.</p> <p>How often have you seen the QR code for shops or cafes placed high up on a window or counter? For those with restricted mobility these are impossible to scan independently. Similarly, people who are blind or have low vision have difficulty finding the QR code and lining up their smartphones to scan.</p> <p>While guidelines for the placement of QR codes are specific, the environment they’re used in often precludes better accessibility.</p> <p>Improvements such as near field communication (<a href="https://nfc-forum.org/what-is-nfc/about-the-technology/">NFC</a>) technologies (currently being tested by the Ministry of Health) and size reduction of QR codes all help. But imagine a world in which the built environment was designed from the outset for accessibility.</p> <p><img src="https://images.theconversation.com/files/432079/original/file-20211115-13-1bv392u.jpg?ixlib=rb-1.1.0&amp;q=45&amp;auto=format&amp;w=754&amp;fit=clip" alt="Woman scanning QR code on shop window" /> <span class="caption">Everyday activities like scanning a QR code should not be a challenge for disabled people.</span> <span class="attribution"><span class="source">GettyImages</span></span></p> <h2>Harnessing lived experience</h2> <p>Meeting recently with several app project managers to discuss accessibility, I was reminded of the need for accessible design to be considered from the inception of a project. While intentions were good, the lack of guidelines and limited lived experience of disability were evident.</p> <p>Good results are overly dependent on the motivation of the project team, rather than on established rules and goals. Many industries include the input of the eventual end users in the design process, but other user subsets – such as disabled people – have long been overlooked.</p> <p>Separating disability from the health sector at a socio-political level is a good start because it turns traditionally negative perceptions into ones of possibility. But is it enough to overcome both structural barriers and unconscious bias in the community?</p> <p>I believe harnessing the lived experience of disabled people is key to changing the face of disability and design at both a societal and personal level.</p> <h2>Changing the narrative</h2> <p>As the <a href="https://www.gcop.co.nz/">Global Centre of Possibility</a>’s Minnie Baragwanath explains, tackling some of the limitations of dominant design practices will be key. New design paradigms will be required that respond to the complexity, volatility, uncertainty and ambiguity that disabled people often navigate in the contemporary world.</p> <p>New Zealand could learn from the UK and US, where equity for the disabled is being pursued through regulation and legislation. In 2019 I attended several conferences in London and travelled to meet friends and family. While accessible design was not always perfect, the acceptance and normalisation of disability at community and professional levels was profound.</p> <p>So, while it’s exciting to see the new ministry’s plans to change the narrative around disability, it remains to be seen how this will filter down to reach everyday New Zealanders.</p> <p>Perhaps now is the time to take the government at its word and expect opportunities for people with disabilities to participate meaningfully in reshaping that narrative. With this in mind, perhaps the new ministry could be renamed the Ministry for Possibility.<!-- Below is The Conversation's page counter tag. Please DO NOT REMOVE. --><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; text-shadow: none !important;" src="https://counter.theconversation.com/content/171720/count.gif?distributor=republish-lightbox-basic" alt="The Conversation" width="1" height="1" /><!-- End of code. If you don't see any code above, please get new code from the Advanced tab after you click the republish button. The page counter does not collect any personal data. More info: https://theconversation.com/republishing-guidelines --></p> <p><span><a href="https://theconversation.com/profiles/sally-britnell-1259807">Sally Britnell</a>, Senior Lecturer in Nursing, <em><a href="https://theconversation.com/institutions/auckland-university-of-technology-1137">Auckland University of Technology</a></em></span></p> <p>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/good-design-lies-at-the-heart-of-normalising-disability-nzs-new-ministry-for-disabled-people-must-make-it-a-priority-171720">original article</a>.</p> <p><em>Image: Shutterstock</em></p>

Aged Care

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Why we need to normalise illness

<p><em><strong>Gill Hubbard is an associate professor in cancer care at the University of Stirling. Claire Wakefield is an associate professor in the School of Women’s and Children’s Health at the University of New South Wales.</strong></em></p> <p>Why are we so shocked when we, or someone we know, becomes ill? Why are many people scared of illness and unable to support their loved ones when illness strikes? And why do so many people still think “it won’t happen to me”?</p> <p>These questions strike at the heart of our relationship between sickness and health and our reluctance to confront illness as part of our everyday lives.</p> <p>Many people do not talk openly about illness because they fear it will make them seem weak or <span style="text-decoration: underline;"><strong><a href="http://onlinelibrary.wiley.com/doi/10.1002/pon.2048/full" target="_blank">self-indulgent</a></strong></span>.</p> <p>People also keep illness a secret because they worry they will be <span style="text-decoration: underline;"><strong><a href="http://onlinelibrary.wiley.com/doi/10.1111/j.1467-9566.2010.01322.x/full" target="_blank">blamed</a></strong></span> or <span style="text-decoration: underline;"><strong><a href="https://theconversation.com/its-your-fault-you-got-cancer-the-blame-game-that-doesnt-help-anyone-66995" target="_blank">judged for developing it</a></strong></span>, which is surprisingly common. For example, think about the stigma patients and their families experience if they are affected by <span style="text-decoration: underline;"><strong><a href="http://www.bmj.com/content/328/7454/1470.long" target="_blank">lung cancer</a></strong></span>, <span style="text-decoration: underline;"><strong><a href="http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0046924" target="_blank">obesity-related illness</a></strong></span> or <span style="text-decoration: underline;"><strong><a href="http://psycnet.apa.org/index.cfm?fa=buy.optionToBuy&amp;id=2006-07278-007" target="_blank">mental illness</a></strong></span>.</p> <p>This fear of being judged or blamed may also contribute to people hiding their symptoms, even from health professionals, delaying <span style="text-decoration: underline;"><strong><a href="http://www.nature.com/bjc/journal/v112/n1/abs/bjc2014516a.html" target="_blank">diagnosis</a></strong></span> and proper <span style="text-decoration: underline;"><strong><a href="https://academic.oup.com/eurpub/article/24/5/761/474150/Delays-in-diagnosis-and-treatment-of-breast-cancer" target="_blank">management</a></strong></span>.</p> <p>Perhaps we don’t talk about illness because of the global <span style="text-decoration: underline;"><strong><a href="http://www.forbes.com/sites/liyanchen/2015/12/21/the-most-profitable-industries-in-2016/#675590f37a8b" target="_blank">multi-billion dollar health industry</a></strong></span> reinforcing a message that we must be healthy if we consume the right <span style="text-decoration: underline;"><strong><a href="http://onlinelibrary.wiley.com/doi/10.1111/j.1467-9566.2008.01121.x/abstract" target="_blank">food and drinks</a></strong></span>.</p> <p>Or perhaps we don’t talk about our illness because we believe modern medicine will cure us.</p> <p>All of these factors mean remaining quiet about illness becomes normal, illness is often hidden and many people cope with illness alone. While it may be acceptable to talk about having a common cold, it seems that speaking about more serious illness is not. Sometimes we hide away our health troubles behind a mask of wellness.</p> <p>About a <span style="text-decoration: underline;"><strong><a href="http://onlinelibrary.wiley.com/doi/10.1002/pon.3679/abstract" target="_blank">quarter</a></strong></span> to a <span style="text-decoration: underline;"><strong><a href="https://www.diabetes.org.uk/About_us/News_Landing_Page/One-million-risk-health-by-keeping-diabetes-secret/" target="_blank">third</a></strong></span> of people with serious physical illnesses hide their illness from colleagues and even family and friends. The data is even more striking when considering mental health problems, with studies suggesting more than <span style="text-decoration: underline;"><strong><a href="http://www.rand.org/pubs/research_reports/RR1074.html" target="_blank">two-thirds</a></strong></span> of people would conceal a mental illness from their co-workers or classmates.</p> <p>So, it is hardly surprising people are not prepared when they, or a loved one, become ill; they can find it hard to <span style="text-decoration: underline;"><strong><a href="http://www.jclinepi.com/article/0895-4356(90)90123-7/fulltext" target="_blank">cope</a></strong></span> psychologically with, and adjust to, their and other people’s illness.</p> <p><strong>Serious and chronic disease is common</strong></p> <p>Society seems in a state of denial that illness is a fact of life for most families. It is part of the human condition.</p> <p>Serious and chronic illness is <span style="text-decoration: underline;"><strong><a href="http://www.health.gov.au/internet/main/publishing.nsf/content/chronic-disease" target="_blank">becoming more common</a></strong></span>. At any one time, about half of us will be managing a serious health condition and around one in five of us will be experiencing <span style="text-decoration: underline;"><strong><a href="http://www.aihw.gov.au/media-release-detail/?id=60129552034" target="_blank">two or more serious illnesses</a></strong></span> at once.</p> <p>No family is immune: serious illness can affect people of all ages, wealth, professions and education levels. Celebrities also develop serious <span style="text-decoration: underline;"><strong><a href="http://www.livescience.com/36251-celebrity-health-illness-diseases.html" target="_blank">illnesses</a></strong></span> (although many likely keep their health problems private).</p> <p>Look around you. Who in your family is ill? Who is off work because they are sick with something other than a common cold? Who has been diagnosed with a life-threatening condition (cancer, diabetes and heart disease spring to mind) or with a chronic condition such as inflammatory bowel disease, arthritis or depression?</p> <p><strong>Living with illness</strong></p> <p>We are now coming to understand that many life-threatening diseases are in reality long-term conditions rather than a death sentence. Many people are managing multiple serious illnesses at once, while others are told they are at risk of developing a serious illness in the future. If your family, friendship circle and workplace is anything like ours, then being ill is surprisingly common.</p> <p>There are a number of different psychological approaches to help us cope with these long-term health problems.</p> <p>So-called <span style="text-decoration: underline;"><strong><a href="http://onlinelibrary.wiley.com/doi/10.1002/14651858.CD008704.pub2/abstract" target="_blank">third wave psychological therapies</a></strong></span> promote the idea of accepting rather than avoiding illness, and the pain and suffering that often accompanies it. These types of therapies may help us to cope when illness strikes. They can help patients to clarify their values and make choices that align with them.</p> <p>Other more traditional psychological approaches (such as <span style="text-decoration: underline;"><strong><a href="https://theconversation.com/explainer-what-is-cognitive-behaviour-therapy-37351" target="_blank">cognitive behaviour therapy</a></strong></span>) may also help people who are struggling with their health to re-frame their illness as part of the normal experience and identify effective coping strategies. They may also help people to identify their needs and seek help to meet these needs.</p> <p>For young people who are ill, more modern approaches, using internet-delivered support may meet their needs well, for instance this <span style="text-decoration: underline;"><strong><a href="https://bmccancer.biomedcentral.com/articles/10.1186/1471-2407-12-339" target="_blank">online intervention</a></strong></span> for young cancer survivors.</p> <p>And when an illness becomes terminal, psychological therapies and bereavement counselling can help patients, families and friends to face the end of life.</p> <p>These forms of support may help people thrive with illness rather than despite their illness. But society also needs a “therapy” to cope with people being ill.</p> <p>For starters, we need to see people who are not 100% healthy represented in the government, workplace and media, in fact in all areas of social life. This should lead to greater acceptance of illness and position ill health as the new normal.</p> <p><em>Written by Gill Hubbard and Claire Wakefield. First appeared on <a href="https://theconversation.com/why-we-become-more-forgetful-with-age-and-what-you-can-do-about-it-70102" target="_blank"><strong><span style="text-decoration: underline;">The Conversation</span></strong></a>. </em><img width="1" height="1" src="https://counter.theconversation.edu.au/content/72970/count.gif?distributor=republish-lightbox-advanced" alt="The Conversation"/></p>

Caring

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The normalisation of ageing and how to make it matter

<p><em><strong>Jenni Ogden, 68, is the author of Fractured Minds and Trouble In Mind and her first novel, <span style="text-decoration: underline;"><a href="https://www.goodreads.com/book/show/27037952-a-drop-in-the-ocean" target="_blank">A Drop In The Ocean</a></span>, was published this May. She lives on Great Barrier Island in New Zealand.</strong></em></p> <p>The research evidence that keeping our minds and bodies active can both increase and enrich the number of years we live is building steadily, and is as near to fact as we need to take it on board. Then there are those people we know ourselves; a great-grandmother still living independently, playing bridge with a group of friends twenty years her junior, and telling her great-grandchildren stories of her childhood in the roaring twenties. On the news we see the centenarian who runs marathons, frustrated with himself because it took him longer than last year.  Most of us can’t run marathons now, and certainly don’t expect to when we’re 100, but we might have a sneaking hope—if we ever allow ourselves to think about it—that we’ll be still healthy enough in mind and body to enjoy life into our eighties and nineties. If, from the optimistic stance of our healthy younger self, we could make decisions for our end, many of us would likely opt to live for as long aswe are healthy enough to enjoy it, at least some of the time.</p> <p>Although cancer cut short his life by a few years, this was definitely true of Oliver Sacks. When he died on August 30th, 2015, at the age of 82, the people who had worked with him for many years conveyed the sad but not unexpected news in their newsletter, telling his friends and followers that he spent his final days “doing what he loved—playing the piano, writing to friends, swimming, enjoying smoked salmon, and completing several articles.” Only two weeks earlier he had published an essay, <strong><span style="text-decoration: underline;"><a href="http://www.nytimes.com/2015/08/16/opinion/sunday/oliver-sacks-sabbath.html?_r=1" target="_blank">“Sabbath,”</a></span></strong> in the New York Times. His closing paragraph was perhaps his public goodbye. “And now, weak, short of breath, my once-firm muscles melted away by cancer, I find my thoughts, increasingly, not on the supernatural or spiritual, but on what is meant by living a good and worthwhile life — achieving a sense of peace within oneself. I find my thoughts drifting to the Sabbath, the day of rest, the seventh day of the week, and perhaps the seventh day of one’s life as well, when one can feel that one’s work is done, and one may, in good conscience, rest.” His remarkable autobiography <em>On The Move: A Life</em>, was published in April, and there are more books, as yet unpublished, waiting in the wings.</p> <p>Oliver Sacks had ample warning that he would be unlikely to see his 83rd birthday, and he made the most of every day he had left. Of course he was no ordinary man, and it is unlikely that many of us will be as productive in our last days, especially if we are suffering pain and discomfort, as Dr Sacks may well have been. Nevertheless, we can take some valuable lessons from the way he spent his final months; perhaps lessons even more valuable than the many we have learned from his books and essays on the human condition.</p> <p>Sacks was not a religious man and had no expectations of an afterlife, other than what he left on earth in his writings and in the memories of those still alive. We all know that death is inescapable, whether or not we believe there is more beyond, yet for me at least, and I expect for most of us, when we are generally in good health and a long way from our mid-eighties or whatever the latest statistics tell us the life expectancy for our sex and socio-economic group is, this biological fact is amazingly difficult to grasp. But grasp it we should, sooner or later, at least once we hit fifty or so! Not in order to feel depressed and grim about it, but rather to normalise it, and perhaps reduce the fear that often accompanies thoughts of physical and mental deterioration.</p> <p>Seventy percent of deaths in the Western world occur after the age of 65, so if you are way younger than this, as most readers of <em>Psychology Today</em> are, you probably have too many other things to enjoy and worry about, and that’s how it should be. But even you will likely one day have to face the aging and death of your grandparents, and then your parents. Here’s the thing; living well until the end is easier to do if the central character has the right sort of support and understanding from the people he or she loves. Oliver Sacks died at his home, surrounded by his close friends and family. That’s how most of us probably hope to die, and seventy years ago most deaths did happen at home. But today 80 per cent of people die in hospital or another institutional setting. Sometimes this is the best place; a hospice for example when the person needs specialist care to make their last days bearable, or a specialist facility when dementia has taken their mind and personality before death, but in many cases with the proper forward planning and attitude, a home death would be quite possible. Just as important is that period at the end of life, when we are wearing out. It is mind-blowing that with the help of higher standards of living and medical advances many human cultures have succeeded in extending their life expectancy so dramatically; in the US by 35 years since 1900. Today the last child in a family is born to younger mothers than in the past; in the early 1900s a mother’s last child was born near menopause (adding to the chance of her premature death). So by the time we are fifty, all our kids are over twenty and we potentially have thirty-five or more years to live. No wonder there are fewer and fewer multigenerational families living in one house! Indeed, in today’s world many older people don’t want to live with their children (and would rather these adult kids didn’t live with them!) so growing old with family and friends around no longer means all living together. What many seek now is independence well into old age, perhaps with a partner, or in a retirement village where there are others of the same generation to share interests. But a close relationship with family and friends is still of utmost importance, and the older we get the more often we need family close by.</p> <p>Atul Gawande in his book <em>Being Mortal: Illness, Medicine and What Matters In the End</em>, makes a strong case against the over-medicalisation of aging and dying, and believes that a better approach is to train health practitioners, and especially general practitioners, how to assess the healthy elderly and provide the low-cost, humane care and advice that will help them live the last years and months of their lives as safely and contentedly as possible. These “interventions” are often as simple as ensuring their feet and toenails are cared for so they are less likely to fall, that they have an adequate diet, that they have regular contact with people who enjoy their company, and that their home is adapted to make their lives easier. This last is something that is best done by the elderly themselves, before they get too old to manage such an upheaval. Families who do their best to assist with this without taking over and trying to force their own opinions and decisions on their parents or grandparents about what is best (for their parents or for them?) are the five-star families to have.</p> <p>And this leads on to one of Gawande’s most important points: what matters in the end can only be discovered by asking the elderly person. Their children, or even their partner of forty or more years, may not know what matters to them right now, at this point in their lives. We all know that what matters to us can change as we go through life, and we can’t always predict ahead of time what will really matter when we are old. Gawande discusses this in the context of medical interventions offered to elderly people, sometimes with terminal illnesses, but more commonly when they have numerous “medical” problems as a result of old age; that is, the gradual wearing out of their body organs. The discussion the family should have with their elderly relative is about quality of life—what matters to them and how much are they willing to risk and suffer (in terms of medical interventions) in order to make this possible? For some it may be that if they can be made well enough to be around for their grand-daughter’s wedding, that is what really matters; for others it will be that if they can still listen to music although bedridden and unable to see well enough to read, that is what really matters; and for others it may be that if they can’t sit at the table every night and eat with their family and join in the conversation, then it is time to go. Some people may even want everything possible done to keep them alive, whatever the risks and possible consequences. Not an easy discussion, and one that may need to be repeated, given that what really matters in the end will change as the body becomes more debilitated and pain increases, and as the mind dims.</p> <p>For Oliver Sacks, what really mattered in the end was to keep writing, listening to his music, eating his favourite foods and to keep loving and being loved by his partner and friends. This he achieved, such that his legacy is that to the very end, he enjoyed a life well lived. And as I am sure he would have said, if he could do it, so can we all.</p> <p><em>First appeared on <span style="text-decoration: underline;"><strong><a href="https://www.psychologytoday.com/" target="_blank">Psychology Today.</a></strong></span></em></p> <p><em>To find out more about Jenni, please visit her <span style="text-decoration: underline;"><strong><a href="http://www.jenniogden.com/" target="_blank">website here.</a></strong></span></em></p> <p><strong>Related links:</strong></p> <p><a href="/health/caring/2016/06/90-year-old-beautiful-birthday-speech-reflecting-on-her-life/"><strong><em><span style="text-decoration: underline;">90-year-old’s beautiful birthday speech reflecting on her life</span></em></strong></a></p> <p><a href="/health/caring/2016/06/poem-highlights-the-beauty-of-ageing/"><span style="text-decoration: underline;"><em><strong>Poem highlights the beauty of ageing</strong></em></span></a></p> <p><a href="/health/caring/2016/06/18-great-quotes-about-ageing/"><em><span style="text-decoration: underline;"><strong>18 great quotes about ageing</strong></span></em></a></p>

Caring