tag:theconversation.com,2011:/au/topics/dwarfism-23014/articlesDwarfism – The Conversation2023-09-24T20:01:53Ztag:theconversation.com,2011:article/2099892023-09-24T20:01:53Z2023-09-24T20:01:53Z‘Excavating something I barely had language for’: two memoirs of disability and family explore Deafness and dwarfism<p>In my many years of reading and writing about disability and chronic illness, my preference leans toward books that look outward, rather than inward, in their approach to truth-telling. The intricacies of living in a marginalised body tend to feel more philosophical if they resist solipsism and reach toward the universal. </p>
<p>I’m thinking about Fiona Wright’s essay collection, <a href="https://giramondopublishing.com/books/the-world-was-whole">The World Was Whole</a>, which focuses on suburban and urban houses and homes, and invites us to think about the body as home – and the question of what happens when the body fails us. </p>
<p>Books like this prove inclusive, rather than exclusive, because they cater to those living with disability, but also use a near-universal experience (in Wright’s case, the theme of houses and homes) as a framework to help readers to imagine their way into their specific experience (for Wright, of being failed by her body).</p>
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<p><em>Review: The House with all the Lights On – Jessica Kirkness (Allen & Unwin); Broke – Sam Drummond (Affirm Press).</em></p>
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<p>The more people included in a readership, the wider the discussion and the greater the potential to grow larger communities of caring and empathy. </p>
<p>In their plight to lift the lid on oft-hidden disabled experiences, two debut memoirs – one exploring Deafness, the other pseudoachondroplasia (a form of dwarfism) – do just this. They focus not just on the experience of living in an othered body, but on the authors’ experiences of family.</p>
<h2>Deaf ways of being</h2>
<p>Jessica Kirkness’s grandfather videoed his family, his sheep and the busy ants. But as a Deaf person, he didn’t bother with the audio when showing those videos to others. For him, audio was irrelevant: it’s seeing that matters.</p>
<p>Being a highly-tuned seer is a Deaf Gain. As Kirkness explains in her book, this is “the notion that there are unique cognitive, creative and cultural benefits arising from Deaf ways of being in the world”. Her memoir illustrates this notion.</p>
<p>Kirkness grew up living next-door to her Deaf grandmother and grandfather and <a href="https://www.allenandunwin.com/browse/book/House-With-All-The-Lights-On-9781761069079/">The House With All The Lights On</a> is about the deep love they shared. In its very language, it’s hyper-aware of Kirkness’s role as a hearing person writing about the Deaf experience. </p>
<p>To be deaf (small “d”) is to be without hearing – but to be Deaf is to be part of a shared culture, who identify as culturally Deaf and share a <a href="https://theconversation.com/explainer-what-is-sign-language-21453">signing language</a>. (In Australia, that’s Auslan, or Australian sign language.)</p>
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<p>If I were to tell you a story in sign language – the story of my grandparents and me – I’d begin with a single finger touching my chest. My hands would form the signs for “grew up” and then “next door”, a flattened palm rising from my torso to eye level, followed by my index finger hooked over my thumb and turned over at the wrist like a key in an ignition. I’d use the signs for “my grandparents”: a clenched fist over my heart, and the letter signs “G, M, G” to represent “grand-mother-father”. Then, placing two fingers over my right ear, I’d use the sign for “deaf” to refer to them, and to describe myself, I’d use “hearing”: a single digit moved from beside the ear to rest below the mouth. I’d sign our closeness by interlocking my index fingers in the sign that doubles for “link” or “connection”. By puffing air from my lips, squinting my eyes slightly, and rocking my looped fingers back and forth, I’d place emphasis on the sign, the duration, direction and intensity of its delivery giving tone and shape to the meaning it makes.</p>
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<p>As a scholar specialising in d/Deaf people’s appreciation and perceptions of music, there is a deep rhythm to Kirkness’s telling. A musician, she’s an aural person, but having grown up as a conversationalist with and interpreter for her grandparents – and later, a sign-language teacher to children – she is, consequently, a visual person, too. </p>
<p>The sound of her prose in the reading-mind is sometimes magnificent. And the descriptions of her grandparents communicating – with her, with one another – is abundantly, respectfully detailed. Passages such as the one above are plentiful, bound to draw readers wholeheartedly into the narrative of her unique upbringing. </p>
<p>Not shying away from statistics, chronicles and definitions, the book is also instructive. And though Kirkness clearly appreciates the role Deaf culture plays in her life, it’s rarely biased. </p>
<p>By this I mean: if I had a friend whose baby was diagnosed deaf, and that friend had to make a decision about whether or not to give the baby a cochlear implant and therefore the gift of sound, I would give them this book with the intention of providing the pros and cons of Deafness. </p>
<p>A con might be particularised in the following passage, where Kirkness writes about experiencing rude comments and looks directed at her grandparents:</p>
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<p>Inside of me, pride and shame were housed in separate but neighbouring compartments. Much as I tried to ignore this fact, they grazed against one another often enough to produce a kind of reckoning in my adulthood. In all the years I tended to the fault line between my grandparents and the world – the contact zones that carried the eternal threat of turning hostile – I’d never thought to acknowledge the feeling that accumulated like sludge in my belly. My strategy was to bury it. Deny it. If I could keep anything negative from Nanny and Grandpa, I would.</p>
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<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/henry-lawson-and-judith-wright-were-deaf-but-theyre-rarely-acknowledged-as-disabled-writers-why-does-that-matter-208365">Henry Lawson and Judith Wright were deaf – but they’re rarely acknowledged as disabled writers. Why does that matter?</a>
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</em>
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<h2>Not own-voices, but valuable</h2>
<p>Reading a hearing person discuss the negative effects of growing up a grandchild of Deaf adults might raise alarm bells for some. In an own-voices story of Deafness, the story would be written by the Deaf person themselves. </p>
<p>Not following that etiquette is taboo from some points of view within marginalised communities. But I think it depends on your reading of the book. </p>
<p>Yes, this is a story that educates its readers about Deaf culture. But it’s also a story about familial love, told in the wake of loss after Kirkness’s grandfather died.</p>
<p>The passage continues:</p>
<blockquote>
<p>But the layers of feeling – the residue of the unexpressed – began to tug at me. I threw myself at the problem the best way I knew. I began to read. From the university library, I sought everything I could from the fields of Deaf and Disability Studies: books, journal articles, online forums. I finished one postgraduate degree and began another, all in the name of excavating something I barely had language for.</p>
</blockquote>
<p>There is a sense that signing is the best language for digging through emotion. But because it is not Kirkness’s native language, she’s had to work hard to learn to inhabit it – and it’s paid off. The House With All The Lights On is a product of that work – and a stunning act of gratitude.</p>
<p>Kirkness refuses to speak of her grandparents as if they are one unit, their Deafness shared. She consistently gives them individual agency. She has drawn them with thick lines, voluminous curves, edgy angles and various colours. She has deftly brought to the page what her Grandpa and Nanny have brought to her life – while also providing insight into Deafness with each anecdote.</p>
<p>One especially memorable sketch shows Granny learning to speak English: the chalk powder placed on the back of her hands, so when she put her lips close and the chalk either moved or did not, she could tell the difference between “p” and “b”. Granny then positioned her granddaughter’s hand on her throat and sounded out “m” and “n” and said, “I learned about sounds through feeling, see?” </p>
<p>Nanny was proud of her speech and of her ability to lip-read, whereas Grandpa only wanted to sign: “To appreciate him fully, I need visuals, for his voice was always carried in his hands.” Kirkness later describes those hands, which turned thousands of pages, as she described his relationship with books: </p>
<blockquote>
<p>Ever the autodidact, Grandpa was always reading. He’d frequently consult his encyclopaedias and reference books whenever he found himself wondering about one thing or another. It was a habit he developed in childhood, having found himself excluded, often unintentionally, from family conversations.</p>
</blockquote>
<p>The House With All The Lights On is a profound book on Deafness as identity, written by a hearing person who cannot divorce Deafness from the love she feels for her grandparents.</p>
<p>Kirkness’s book sits bravely and beautifully alongside Fiona Murphy’s <a href="https://www.textpublishing.com.au/books/the-shape-of-sound">The Shape of Sound</a> and Jessica White’s <a href="https://uwap.uwa.edu.au/products/hearing-maud">Hearing Maud</a> as part of a growing dialogue on deafness and hearing, and on Deafness and seeing. </p>
<p>It is one of the most touching, generous, superbly written family memoirs I’ve come across.</p>
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<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/covid-has-brought-auslan-into-the-spotlight-but-it-would-be-wrong-to-treat-the-language-as-a-hobby-or-fad-151667">COVID has brought Auslan into the spotlight, but it would be wrong to treat the language as a hobby or fad</a>
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</em>
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<h2>The injustices of growing up disabled</h2>
<p>Sam Drummond begins his memoir, <a href="https://affirmpress.com.au/browse/book/Sam-Drummond-Broke-9781922848475/">Broke</a>, with a scene that does not live in his own memory. His child-aged mother is playing the piano and her mother, who sits beside her, is contemplating how to tell her children she’s dying. </p>
<p>By beginning with his mother’s story, rather than his own, this prologue works as an explanation for why Drummond’s mother might have moved him and his brother around so much – and had so many failed romantic relationships. It’s a signpost to how we should read his story.</p>
<p>Drummond is a disability advocate and lawyer who lives with pseudoachondroplasia, a form of dwarfism that impacts bone growth and joint health. </p>
<p>The injustices of growing up disabled – schoolyard taunts, unfit to play sports, going for a job interview for the first time and striking out before a question is even asked – run throughout, in matter-of-fact prose that avoids the sentimental and resists overindulgences. </p>
<p>If I’m to trust the prologue, then the author’s reliance on a far-from-self-centred narrative is due to a focus on his mother, rather than himself. For example, after he leaves hospital for a surgery involving the breaking and resetting of his legs, he notices his mother’s back pain as she lifts him from the car into the wheelchair:</p>
<blockquote>
<p>I realised my Mum was mortal. People had been telling me my whole life that I was deficient in some way, if not directly then in the way they treated me. I had reassured myself I would always have Mum there to make up for my deficiencies. She was a fitness machine. Life had thrown mud at her and she had simply brushed it off. She was a survivor. Yet here I was, at a moment of complete reliance on her. My survival depended on her. And I had glimpsed a chink in her armour. This terrifying thought had not crossed my mind until then: even survivors have an end point.</p>
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<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/friday-essay-the-female-dwarf-disability-and-beauty-84844">Friday essay: the female dwarf, disability, and beauty</a>
</strong>
</em>
</p>
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<h2>Rising above it, but not a hero</h2>
<p>Drummond’s struggle with the physical and mental pain of his disability, and with multiple shifts in home and family set-up, is interesting. But at times I found it difficult to pinpoint the focus of this book.</p>
<figure class="align-right zoomable">
<a href="https://images.theconversation.com/files/549493/original/file-20230921-15-olhs9k.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/549493/original/file-20230921-15-olhs9k.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/549493/original/file-20230921-15-olhs9k.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=993&fit=crop&dpr=1 600w, https://images.theconversation.com/files/549493/original/file-20230921-15-olhs9k.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=993&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/549493/original/file-20230921-15-olhs9k.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=993&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/549493/original/file-20230921-15-olhs9k.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=1248&fit=crop&dpr=1 754w, https://images.theconversation.com/files/549493/original/file-20230921-15-olhs9k.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=1248&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/549493/original/file-20230921-15-olhs9k.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=1248&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
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<span class="caption">Sam Drummond, with his mum and brother.</span>
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<p>At one point I questioned if generational trauma was the focus, but Drummond doesn’t follow through enough with the causes and ripples of his grandmother’s untimely death or his grandfather’s PTSD. Mostly, I read it as a story of survival – of both his mother’s and his own.</p>
<p>Inspiration porn is a genre of memoir that shows the hardships of living with disability, chronic illness or inflicted trauma, so in the end the author can say, “See! I made it out the other side! And you can too if you keep trying!” While the disability community often shuns it, the masses tend to eat it up. </p>
<p>But though Broke follows inspiration porn’s rising-above-it-all plotline, Drummond mostly manages to avoid falling into this genre. His style is pragmatic, rather than straining to inspire.</p>
<p>When describing an afternoon at Centrelink, for example, he writes, </p>
<blockquote>
<p>“Mum. Why doesn’t anyone complain about waiting so long?”<br>
<br>
“Because we have no choice, darling.”<br>
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I looked around at the elderly, the migrants, the other people in wheelchairs, the single mums. Their shirts hung out, their hair was not perfect, their skin was more leathery than Mum’s. But their shoes were now our shoes. The paperwork they filled out was the same as the sheets that lay on Mum’s lap. Their fates were linked to our fate.</p>
</blockquote>
<p>Drummond isn’t casting himself as a hero. He’s clear he is one of many coping with systemic prejudices and inadequate governmental support, helping to make up the “we” who are relegated to the end of the line. His opposite, the “they” who don’t even need to be in the line, are everywhere – even (and especially) in his friendship circle:</p>
<blockquote>
<p>Mum came in with a large plate of bread, jam and cream. He looked at the creation with an air of distrust. “What is it?” he asked.<br>
<br>
“Bread, jam and cream. It’s like scones, just with bread.”<br>
<br>
He ate a slice but stayed silent, shifting awkwardly at my feet. […] He had entered my world and I knew it was vastly different from his world of books and fruit and dinner at the dining room table. I had come to accept the differences. It was nice to be in the same world during school hours, but I would never have his life and I had to be okay with that, even if it made him sad or uncomfortable. […]
<br>
I turned back to the little pink telly.<br>
<br>
Mum came in and sat at the piano, looking wistfully at its closed cover.<br>
<br>
“Mum!” I yelled. “Can I have some more bread, jam and cream?”<br></p>
</blockquote>
<p>There’s the mother and the piano again: the foundations of his “we”. </p>
<p>In terms of showing the differences and similarities of the haves and haves-not – the “we"s and "they"s – Drummond’s book ticks all the necessary boxes. </p>
<p>But unlike The House With All The Lights On, Broke is not an unconflicted love letter to family. Drummond’s portrait of his mother is in the <a href="https://www.dailyartmagazine.com/edward-hoppers-women/">Edward Hopper style</a>: a tired woman carrying a bucketful of woes, who, at the end of the day, is lonely. His subject, however, doesn’t feel centred: she’s often hidden by the clutter of too many items in the room.</p><img src="https://counter.theconversation.com/content/209989/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Heather Taylor Johnson does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>Jessica Kirkman introduces readers to her Deaf grandparents’ experience – and to Deaf culture – in her memoir. And Sam Drummond recalls growing up with pseudoachondroplasia (a form of dwarfism) in his.Heather Taylor Johnson, Adjunct Research Fellow at the JM Coetzee Centre for Creative Practice, University of AdelaideLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1274162020-05-12T12:34:34Z2020-05-12T12:34:34ZStudy shows how Airbnb hosts discriminate against guests with disabilities as sharing economy remains in ADA gray area<figure><img src="https://images.theconversation.com/files/331877/original/file-20200430-42923-16b343t.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Airbnb listings aren't required to comply with the ADA.</span> </figcaption></figure><p>“How could you see my listing if you’re blind?” </p>
<p>“I’d have to check with our insurance company to see if we’re covered to host guests with disabilities.” </p>
<p>“Does the dog drive?”</p>
<p>Those are three typical responses we got from <a href="https://www.airbnb.com/help/article/2503/what-is-airbnb-and-how-does-it-work">Airbnb</a> hosts while posing as guests with disabilities for a <a href="https://www.doi.org/10.5465/amd.2018.0054">study we conducted</a> on the home-sharing service. Some hosts were willing to accommodate us. Some were uneasy. Some were insensitive. We effectively became Airbnb’s secret shopper – even secret to Airbnb – to determine if <a href="https://blog.atairbnb.com/belong-anywhere/">its credo</a> to “belong anywhere” implied that this service was designed with disability access and civil rights in mind. </p>
<p>Our results revealed that Airbnb’s platform perpetuates the social exclusion of people with disabilities. We don’t believe this is done intentionally, but the unregulated nature of rental listings end up subverting the goals of the <a href="https://www.adaanniversary.org/findings_purpose">Americans with Disabilities Act</a>, which turns 30 in July.</p>
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<img alt="" src="https://images.theconversation.com/files/331990/original/file-20200501-42918-411644.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/331990/original/file-20200501-42918-411644.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=492&fit=crop&dpr=1 600w, https://images.theconversation.com/files/331990/original/file-20200501-42918-411644.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=492&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/331990/original/file-20200501-42918-411644.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=492&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/331990/original/file-20200501-42918-411644.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=618&fit=crop&dpr=1 754w, https://images.theconversation.com/files/331990/original/file-20200501-42918-411644.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=618&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/331990/original/file-20200501-42918-411644.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=618&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">President George Bush signed the Americans with Disabilities Act in 1990.</span>
<span class="attribution"><span class="source">AP Photo/Barry Thumma</span></span>
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</figure>
<h2>What the ADA changed</h2>
<p>Before this landmark law, people with disabilities had a very hard time engaging in American life. Structural barriers like buildings without elevators made it difficult to use public transit and limited where people with disabilities could work. They were essentially <a href="https://www.penguinrandomhouse.com/books/164946/no-pity-by-joseph-p-shapiro/">rendered second-class citizens</a>.</p>
<p>For example, people using wheelchairs <a href="https://americanhistory.si.edu/blog/8-ways-which-americans-disabilities-act-changed-everyones-lives">had to abandon</a> them if they needed to ride trains or buses. Grocery stores and other buildings <a href="https://medium.com/@sheribyrnehaber/life-before-the-ada-be8039377942">were usually not accessible</a> to people with disabilities, and restaurants even refused to serve them. Public schools <a href="https://www.washingtonpost.com/posteverything/wp/2015/07/24/why-the-americans-with-disabilities-act-mattered/">excluded an estimated 1 million</a> children with disabilities. And employers could legally avoid hiring someone because of his or her disability – and paid them less than their able-bodied peers with similar qualifications. </p>
<p>This began to change in 1990 with the passage of the ADA, which prohibits disability-based discrimination in all areas of public life. The law makes sure that people with disabilities have the same <a href="https://adata.org/learn-about-ada">rights and opportunities</a> as those without disabilities. Particularly, <a href="https://www.ada.gov/reachingout/title3l1.html">Title III</a> of the ADA covers public accommodations – including private hotels – and requires them to make appropriate changes in policies, practices and procedures, unless this would radically change how businesses operate.</p>
<p>The law, however, was never designed to cover private citizens, such as Airbnb hosts. The recent rise of the largely unregulated sharing economy thus complicates whether the ADA applies to these new types of largely person-to-person transactions. It’s a world in which workers are rarely “employees,” and businesses are often just regular people sharing their apartment with a stranger. </p>
<p>Traditionally, the ADA prohibits businesses like hotels from discriminating against people with disabilities. However, Airbnb is not a normal hospitality company that manages and franchises a collection of hotels and resorts. Instead, it’s a broker between hosts who temporarily sublet their homes and guests who seek affordable and unconventional places to stay. </p>
<p>To that end, listings are not hotels either. And the ADA specifically applies only to places with more than five rooms to rent and are not occupied by the homeowner as a place of residence. These conditions are seldom met on Airbnb. Therefore, many hosts are not legally prohibited from discriminating, which means that guests with disabilities are subject to pre-ADA conditions.</p>
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<img alt="" src="https://images.theconversation.com/files/331988/original/file-20200501-42956-1mmohvs.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/331988/original/file-20200501-42956-1mmohvs.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=420&fit=crop&dpr=1 600w, https://images.theconversation.com/files/331988/original/file-20200501-42956-1mmohvs.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=420&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/331988/original/file-20200501-42956-1mmohvs.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=420&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/331988/original/file-20200501-42956-1mmohvs.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=528&fit=crop&dpr=1 754w, https://images.theconversation.com/files/331988/original/file-20200501-42956-1mmohvs.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=528&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/331988/original/file-20200501-42956-1mmohvs.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=528&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Wheelchair protestors demanding easy-access transportation protested in San Francisco, California, in 1978.</span>
<span class="attribution"><span class="source">AP Photo/Sal Veder</span></span>
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</figure>
<h2>Documenting discrimination</h2>
<p>We <a href="https://www.doi.org/10.5465/amd.2018.0054">began our study</a> in June 2016, investigating access to nearly 4,000 Airbnb listings by requesting lodgings with the use of simulated people who had disabilities or were able-bodied. Inconspicuously, across the U.S., we solicited hosts with fake guests who experience blindness, cerebral palsy, spinal cord injury, dwarfism or no disability. The study concluded in November 2016, and we analyzed host responses through early 2017. Following a peer review, we published our findings in February 2019.</p>
<p>Discrimination against our disabled guests was evident. Those without disabilities were offered preapprovals – that is, following an initial inquiry about availability, hosts may make approval automatic once a guest requests a booking – 75% of the time, whereas those with disabilities had a much harder time, depending on the disability. </p>
<p>Those with dwarfism were preapproved 61% of the time, while people with blindness were at 50%. Guests suffering from cerebral palsy were at 43%. And having a spinal cord injury meant a preapproval rate of just 25%. </p>
<p>Overall, the more extreme the disability, like using a wheelchair, the more discrimination our disabled “guests” endured.</p>
<h2>‘How do you drive?’</h2>
<p>Through the process of seeking preapprovals, we engaged with every host in our review, which gave us insights into how they reacted to people with disabilities. </p>
<p>Some hosts were extremely positive and offered assistance. For example, one eagerly explained to our “guest” with a spinal cord injury, “I can carry you and your chair up the stairs… I really want you to stay.” </p>
<p>Another kindly replied to a traveler with dwarfism, “We would be glad to modify anything as needed.” </p>
<p>But some hosts weren’t as accommodating. For example, one expressed concerns over cleaning costs specific to a traveler with blindness who uses a guide dog, “[I]f you’re willing to pay $100 for animal cleaning, I would be OK with you staying.” This was on top of the location’s typical cleaning fee assessed to all guests.</p>
<p>A second was especially disrespectful toward a traveler with blindness by replying, “Um. That’s a new one. How do you drive?” </p>
<p>And while a third was a bit more empathetic, the host was still dismissive toward a traveler with cerebral palsy, blaming an architectural constraint. “Our place has a very narrow and circular stairway, so it would be too difficult for you,” the host said.</p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/331991/original/file-20200501-42918-h928x.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/331991/original/file-20200501-42918-h928x.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/331991/original/file-20200501-42918-h928x.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/331991/original/file-20200501-42918-h928x.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/331991/original/file-20200501-42918-h928x.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/331991/original/file-20200501-42918-h928x.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/331991/original/file-20200501-42918-h928x.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Airbnb hosts had mixed responses when guests with disabilities tried to book lodging.</span>
<span class="attribution"><span class="source">Yuriko Nakao/Getty Images</span></span>
</figcaption>
</figure>
<h2>Airbnb’s efforts to fix the problem</h2>
<p>To Airbnb’s credit, it had recognized the problem of disability access in its listing before we began our investigation and began implementing changes during the study. This allowed us to see in real time what kind of impact it had. </p>
<p>The company announced a <a href="https://www.airbnb.com/help/article/1405/airbnbs-nondiscrimination-policy-our-commitment-to-inclusion-and-respect">nondiscrimination policy</a> in November 2016 that explicitly banned using a guest’s disabilities in turning down a requested stay, in addition to other characteristics like race, national origin, religion, sexual orientation and marital status.</p>
<p>However, our study found that compliance didn’t vary after the policy was implemented. </p>
<p>At the time, we felt that this was due to how nascent the policy was. However, as recently as 2019, there have been anecdotes detailing its weak enforcement. Haben Girma, a disability rights lawyer who is deaf and blind, claims <a href="https://techcrunch.com/2019/11/19/how-airbnb-handles-discrimination-claims/">she was denied lodging</a> after disclosing that her service animal would accompany her. </p>
<p>The host defended himself by indicating that his rental was under construction and would be hazardous for any stay, yet the listing was successfully booked by an able-bodied colleague of Girma for the same dates.</p>
<p>Soon after our study, in late 2017, <a href="https://techcrunch.com/2017/11/16/airbnb-buys-accomable-a-specialist-in-travel-listings-for-disabled-people/">Airbnb purchased Accomable</a>, a travel website focused on those with disabilities. This acquisition helped Airbnb improve its search filter by allowing hosts to list <a href="https://www.airbnb.com/help/article/1961/how-do-i-add-accessibility-features-to-my-listing">accessibility features more precisely</a>.</p>
<p>It remains to be seen how effective this has been, though some guests <a href="https://www.wired.co.uk/article/airbnb-booking-accessibility-wheelchair-hosts">have found the accessibility filters to be inaccurate</a>.</p>
<h2>Time for an ADA update</h2>
<p>The ADA <a href="https://www.adaanniversary.org/findings_purpose">emerged</a> from a long history of frustration of how people with disabilities were marginalized in the areas of employment and more. </p>
<p>Now, as the sharing economy continues to expand, we believe the law should be amended to specifically protect people from disability-based discrimination on these online platforms. While it would not be realistic or sensible to force every mom-and-pop listing on Airbnb to become ADA-compliant, there must be ways to ensure that when guests without disabilities have access to listings, those with disabilities can have access to similar ones at the same cost.</p>
<p>As the ADA approaches its 30th anniversary, this is an opportunity for legislators, disability rights activists, Airbnb, as well as its users to collectively and proactively ensure equal access for everyone.</p>
<p>[<em>Insight, in your inbox each day.</em> <a href="https://theconversation.com/us/newsletters?utm_source=TCUS&utm_medium=inline-link&utm_campaign=newsletter-text&utm_content=insight">You can get it with The Conversation’s email newsletter</a>.]</p><img src="https://counter.theconversation.com/content/127416/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>The authors do not work for, consult, own shares in or receive funding from any company or organization that would benefit from this article, and have disclosed no relevant affiliations beyond their academic appointment.</span></em></p>Airbnb’s platform perpetuates the social exclusion of people with disabilities, while the 30-year-old ADA doesn’t apply to the sharing economy.Mason Ameri, Assistant Professor of Professional Practice, Rutgers University - NewarkDouglas L. Kruse, Distinguished Professor, Rutgers UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1247472019-10-08T23:09:58Z2019-10-08T23:09:58ZFast evolution explains the tiny stature of extinct ‘Hobbit’ from Flores Island<figure><img src="https://images.theconversation.com/files/296079/original/file-20191008-128665-1ubc795.jpg?ixlib=rb-1.1.0&rect=245%2C131%2C4685%2C3506&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">An Indonesian island was home to _H. Floresiensis_ – but how did the dwarfed human species evolve?</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/koka-beach-one-beaches-sikka-regency-1243898557">areza taqwim/Shutterstock.com</a></span></figcaption></figure><p>It’s not every day that scientists discover a new human species. </p>
<p>But that’s just what happened back in 2004, when archaeologists uncovered some very well-preserved fossil remains in the Liang Bua cave on Flores Island, Indonesia. The diminutive size of this new human species, <a href="https://www.nature.com/news/the-discovery-of-homo-floresiensis-tales-of-the-hobbit-1.16197"><em>Homo floresiensis</em></a>, earned it the nickname “Hobbit.” </p>
<p>Shockingly, researchers believed it had survived until the end of the last Ice Age, some 18,000 years ago. That was much later than Neanderthals lived, later than any human species other than our own.</p>
<p>Almost immediately, interpretations of this Hobbit skeleton met with fierce criticism from both anthropologists and evolutionary biologists. The poor Hobbit was accused of being an example not of a small new human species, but an abnormal <em>Homo sapiens</em>, bearing any of a variety <a href="https://doi.org/10.1002/ajpa.20655">of growth and</a> <a href="https://doi.org/10.1098/rspb.2007.1488">hormonal conditions</a>. The Hobbit, many scientists decided, had no place among the giants of the human evolutionary record.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/295885/original/file-20191007-52202-lzkp34.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/295885/original/file-20191007-52202-lzkp34.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/295885/original/file-20191007-52202-lzkp34.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/295885/original/file-20191007-52202-lzkp34.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/295885/original/file-20191007-52202-lzkp34.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/295885/original/file-20191007-52202-lzkp34.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/295885/original/file-20191007-52202-lzkp34.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/295885/original/file-20191007-52202-lzkp34.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">An artist’s interpretation of how <em>H. floresiensis</em> looked in life.</span>
<span class="attribution"><a class="source" href="https://www.flickr.com/photos/timevanson/7283199410">Tim Evanson/Flickr</a>, <a class="license" href="http://creativecommons.org/licenses/by-sa/4.0/">CC BY-SA</a></span>
</figcaption>
</figure>
<p>Yet she – yes, the Hobbit was later found to be a female – had her revenge. This tiny, small-brained creature stood just a bit more than three feet tall and had a brain as big as a chimp. But her place in the human ancestral line was cemented when researchers uncovered another tiny individual in Flores. This second, much older discovery debunked the idea that the Hobbit was a unique, abnormal <em>Homo sapiens</em>.</p>
<p>After 15 years of <a href="https://theconversation.com/the-hobbit-took-our-breath-away-now-its-the-new-normal-60784">intense research</a>, anthropologists now confidently date the Liang Bua individual to have lived between 60,000 and 90,000 years ago. Her much older cousins in Flores lived 700,000 years ago. This long reign testifies to the success of this tiny human species, no matter how small-statured and small-brained they were. </p>
<p>And this year anthropologists found a new dwarfed human species, christened <a href="https://doi.org/10.1038/s41586-019-1067-9"><em>Homo luzonensis</em></a>, in the Philippines.</p>
<p>So why did tiny humans wind up living on these islands? For us biogeographers and <a href="https://scholar.google.com/citations?user=gE-4C2cAAAAJ&hl=en&oi=ao">evolutionary</a> <a href="https://scholar.google.com/citations?user=scYHGuQAAAAJ&hl=en&oi=ao">biologists</a>, the answer was right in front of us: <a href="https://www.pbs.org/wgbh/nova/article/gigantism-and-dwarfism-islands/">the island rule</a>.</p>
<h2>Island life and body size</h2>
<p>Zoologist J. Bristol Foster <a href="https://doi.org/10.1038/202234a0">originally proposed</a> the island rule in 1964. </p>
<p>He’d noted that when a large-bodied species settles onto an island, it will tend to evolve to shrink in size – all the way to the point of leaving dwarf descendants. At the same time, the opposite will happen. Small-bodied species will evolve to be larger, producing gigantic daughter species.</p>
<p>There are spectacular cases of this island rule in action across the world. Think of pygmy elephants and mammoths from <a href="https://doi.org/10.1023/A:1025577414005">Mediterranean</a> and Baja California islands, hippos that would barely outweigh a donkey in Cyprus, deer as tall as a pet dog in Crete, rats as big as a cow in the Caribbean and insects as long as a human hand in New Zealand.</p>
<p>Biologists have proposed various mechanisms that could be responsible for this evolutionary trend. A good motive might be the absence of natural predators on islands. A number of species, most notably elephants and hippos, fend predators off by virtue of their size, an expensive strategy when no killer is lurking in the dark. Also, on islands the scarce resource supply might favor smaller body size because smaller individuals can live with less.</p>
<p>Or it could be that smaller individuals with no predators just produce more offspring, which implies females start delivering earlier and at smaller size, investing less in growth and more in reproduction. This possibility is a likely explanation for <a href="https://doi.org/10.1073/pnas.0708024105">how contemporary human pygmies evolved</a>. </p>
<p>All of these options will eventually lead to changes in the genetic architecture that underlies body-size variation.</p>
<p>So, we asked, could the island rule be an explanation for small size of <em>Homo floresiensis</em> and <em>Homo luzonensis</em>? We thought probably yes.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/296081/original/file-20191008-128681-801yeu.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/296081/original/file-20191008-128681-801yeu.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/296081/original/file-20191008-128681-801yeu.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=420&fit=crop&dpr=1 600w, https://images.theconversation.com/files/296081/original/file-20191008-128681-801yeu.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=420&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/296081/original/file-20191008-128681-801yeu.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=420&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/296081/original/file-20191008-128681-801yeu.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=528&fit=crop&dpr=1 754w, https://images.theconversation.com/files/296081/original/file-20191008-128681-801yeu.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=528&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/296081/original/file-20191008-128681-801yeu.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=528&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">Excavations in 2009 at Liang Bua cave, where <em>Homo floresiensis</em> was found.</span>
<span class="attribution"><a class="source" href="http://www.apimages.com/metadata/Index/Indonesia-Hobbit/2a6835d986064cf095696d86e3e700e6/1/0">AP Photo/Achmad Ibrahim</a></span>
</figcaption>
</figure>
<h2>Modeling generations on the island</h2>
<p>The Hobbit’s most likely ancestor is <em>Homo erectus</em>, a species more than twice its size in terms of its brain and overall bulk. Based on the geological history of Flores and the oldest known fossils of <em>Homo floresiensis</em>, it seems the evolution of the new species must have occurred in less than about 300,000 years.</p>
<p>As evolutionary biologists, we are acquainted with the idea that Darwinian evolution is a slow and gradual process that takes place over very long timescales. Could such drastic change in body size happen this fast?</p>
<p>So our interdisciplinary research team developed a <a href="https://theconversation.com/simulating-evolution-how-close-do-computer-models-come-to-reality-57538">computer model</a> to try to answer this basic question. It’s like a computer game that simulates body size evolution under biologically and ecologically realistic scenarios.</p>
<p>In our model, individuals colonize the island, grow to their adult body size according to how much food is available, give birth to a number of young and die. The basic rule of the game is that individuals that are closer to the “optimum” body size for the island in that moment will leave more descendants. Offspring inherit genes for large or small body size.</p>
<p>Generation after generation, new mutations may appear in the population and shift body size toward either higher or lower values. Occasionally, new individuals might even invade the island and mix with the residents. Another basic rule is that the initial small population cannot grow above the number the island’s resources might sustain.</p>
<p>Our colleagues, Earth systems scientists <a href="https://scholar.google.com/citations?user=kSDahsoAAAAJ&hl=en&oi=ao">Neil Edwards</a> and <a href="https://scholar.google.com/citations?user=1gais1MAAAAJ&hl=en">Phil Holden</a>, used paleoclimatic data to tweak our model. Hotter and wetter times can support more people on the island, and would influence optimum body size at any given moment.</p>
<p>We started our simulations assuming that large-bodied <em>Homo erectus</em> arrived at the island and then evolved into a smaller species there. Since we just don’t know the exact numbers our model should crank through, we based them on estimates obtained from current human populations.</p>
<p>Because of this uncertainty, we ran our model thousands of times, each time using a random combination of all the parameters. Ultimately we were able to build a statistical distribution of how long it took for <em>Homo erectus</em> to become as small as <em>Homo floresiensis</em>.</p>
<p><iframe id="bx726" class="tc-infographic-datawrapper" src="https://datawrapper.dwcdn.net/bx726/3/" height="400px" width="100%" style="border: none" frameborder="0"></iframe></p>
<h2>A new species, in the blink of an evolutionary eye</h2>
<p>After running 10,000 simulations, we were surprised to discover that <a href="http://dx.doi.org/10.1098/rsbl.2019.0481">in less than 350 generations, the process was complete</a>. Thinking in terms of years, assuming a young female delivers a first baby at the average age of 15, that translates to about 10,000 years.</p>
<p>That may seem long for you and me. But from an evolutionary perspective, that’s the blink of an eye – a little more than a thousandth of <em>Homo</em> evolutionary history.</p>
<p>Of course we do not expect that all the features that make <em>Homo floresiensis</em> as unique as it is evolved that fast and at the same time. Yet, our simulation still shows, 300,000 years is far more than enough time for a new human species to arise.</p>
<p>Our work supports the idea that fast evolution is quite plausible under a realistic set of ecological parameters, and that natural selection may be a powerful force influencing body size on islands. And if <em>Homo floresiensis</em> is indeed a product of the island rule, she shows – yet again – that we humans tend to obey the same overall rules driving evolution in many other mammals.</p>
<p>[ <em>You’re smart and curious about the world. So are The Conversation’s authors and editors.</em> <a href="https://theconversation.com/us/newsletters?utm_source=TCUS&utm_medium=inline-link&utm_campaign=newsletter-text&utm_content=youresmart">You can read us daily by subscribing to our newsletter</a>. ]</p><img src="https://counter.theconversation.com/content/124747/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>José Alexandre Felizola Diniz-Filho receives funding from CNPq and CAPES. </span></em></p><p class="fine-print"><em><span>Pasquale Raia does not work for, consult, own shares in or receive funding from any company or organization that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>New research models how the Homo floresiensis species could have evolved its small size remarkably quickly while living on an isolated island.José Alexandre Felizola Diniz-Filho, Professor of Ecology and Evolution, Universidade Federal de Goias (UFG)Pasquale Raia, Associate Professor of Paleontology and Paleoecology, University of Naples Federico IILicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1036282018-09-27T11:27:09Z2018-09-27T11:27:09ZDwarfism: wrestling show will simply reinforce prejudice<figure><img src="https://images.theconversation.com/files/237903/original/file-20180925-149961-436w06.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Dwarfanators: a force for good or just an update of the Victorian freak show?</span> <span class="attribution"><span class="source">Dwarfanators</span></span></figcaption></figure><p>Historically and culturally, many societies’ frames of reference concerning dwarfism have put people with the condition at the margins of humanity. People with dwarfism are <a href="https://www.bbc.co.uk/news/av/uk-45360783/man-with-dwarfism-describes-street-abuse">subjected to daily abuse</a> from members of the public when out working, commuting or just getting on with their daily lives. </p>
<p>Even within disability circles, research suggests that the condition is given <a href="https://www.tandfonline.com/doi/abs/10.1080/15017410902909118">marginal status</a>. Now, a “dwarf-wrestling” company from the US, The Dwarfanators, has travelled to the UK with the intention of putting on wrestling shows around the country. The <a href="https://www.facebook.com/tvnothingelseon/videos/1828652073897925/">PR company</a> in control of its advertising and content has claimed on social media that: </p>
<blockquote>
<p>The Dwarfanator’s Wrestling show is the first time a show of its kind will be seen in the UK since ‘Victorian times’. The aim of the event is change [sic] perception of people with disabilities. </p>
</blockquote>
<p>The reference to “Victorian times” has hit a nerve for some within the UK’s thriving dwarfism community. A UK-based charity, <a href="http://rgauk.org/">The Restricted Growth Association</a> (RGA), representing people with dwarfism has raised concerns that the show could increase levels of abuse against people with dwarfism, and hark back to <a href="http://www.bl.uk/learning/cult/bodies/freak/freakshow.html">Victorian freak shows</a>. The Dwarfanators strongly deny this accusation. </p>
<p>Since the media brought attention to this topic – there was a particularly heated discussion with Piers Morgan on <a href="https://www.youtube.com/watch?v=Va12oN-kRUE&feature=youtu.be">Good Morning Britain</a> – people are saying individual freedom is at stake here. The US wrestlers are not only doing this job willingly, they’re trying to make a living – and with the <a href="https://www.bbc.co.uk/news/uk-england-leicestershire-45485344">cancellation of some of their shows</a> since the start of these discussions, including in Leicester and in Dorset, they claim their livelihoods are at stake. </p>
<p>The RGA has said that the actions of the few impact the lives of many who will have to live with the repercussions of such representations. They are not alone in these assertions. US organisation, Little people of America (LPA), which represents people with dwarfism in the US, has <a href="https://www.lpaonline.org/advocacy-and-community-outreach">come out in support of the RGA’s stance</a>. In a statement, the LPA said:</p>
<blockquote>
<p>Some people argue this issue is about choice. The wrestlers have made the decision of their own free will to participate in the event. Yet, the choice the wrestlers make doesn’t only impact them. It impacts thousands of other little people and their families who are forced to address the stigma related to dwarfs being used as entertainment because of their physical stature.</p>
</blockquote>
<h2>Reclaiming the gaze</h2>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/238309/original/file-20180927-48650-1sefylw.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/238309/original/file-20180927-48650-1sefylw.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=291&fit=crop&dpr=1 600w, https://images.theconversation.com/files/238309/original/file-20180927-48650-1sefylw.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=291&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/238309/original/file-20180927-48650-1sefylw.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=291&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/238309/original/file-20180927-48650-1sefylw.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=366&fit=crop&dpr=1 754w, https://images.theconversation.com/files/238309/original/file-20180927-48650-1sefylw.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=366&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/238309/original/file-20180927-48650-1sefylw.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=366&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Detail from Little Big Woman: Condescension.</span>
<span class="attribution"><span class="source">Debra Keenahan</span></span>
</figcaption>
</figure>
<p>In an article on the <a href="https://theconversation.com/friday-essay-the-female-dwarf-disability-and-beauty-84844">aesthetics of dwarfism and returning the gaze </a>, Australian academic Debra Keenahan argued that the representation of people with dwarfism within the visual arts often mirrored the societal attitude towards people with this disability. That is to say, how people with dwarfism are seen in culture and in the arts, reflects our societal conscious at the time.</p>
<p>When considering the “gaze”, you have to question and critique three perspectives. Who has control behind the lens? What is the representation in front of the lens? And finally, who are the spectators? In her own art, Keenahan is reclaiming ownership and complete control of the representation of dwarf images.</p>
<p>Actor <a href="https://www.rollingstone.com/movies/movie-news/peter-dinklage-master-of-the-game-57152/">Peter Dinklage</a> has become world famous as Tyrion Lannister in the smash hit television series Game of Thrones. But since he first came to prominence in 2003 as Finbar, the central character in The Station Agent, he has been regarded as a leading figure in challenging and redefining societal expectations around dwarfism and the dwarf body.</p>
<p>Taking roles where he can control or manipulate the gaze levelled at his body, Dinklage’s dwarfism often becomes an incidental aspect of his character’s personality. As one of the central characters in Game of Thrones, Dinklage has shown the complexity and agency of Tyrion Lannister – a wise, witty, dangerous intellectual as well as a bon viveur and sexually promiscuous charmer. </p>
<figure>
<iframe width="440" height="260" src="https://www.youtube.com/embed/lvRj9EBQ1qY?wmode=transparent&start=0" frameborder="0" allowfullscreen=""></iframe>
</figure>
<p>Dinklage is known for speaking out about the representations of dwarfism in society, art and culture. He once described the abuse and mockery people with dwarfism receive as <a href="https://www.nytimes.com/2012/04/01/magazine/peter-dinklage-was-smart-to-say-no.html">“one of the last bastions of acceptable prejudice”</a>. In his 2012 Golden Globe acceptance speech, he mentioned the name of a British man who had been assaulted by members of the public in an apparent copycat attempt at “dwarf tossing”, shortly after an incident involving the English Rugby team in New Zealand. Dinklage encouraged the audience <a href="https://www.dailymail.co.uk/tvshowbiz/article-2087341/Dwarf-tossing-victim-Martin-Henderson-trends-Twitter-Peter-Dinklage-Golden-Globe-speech.html">to Google him</a>.</p>
<p>It is at this juncture where organisations such as the RGA and LPA are making the connections between representations from culture and society and dangerous repercussions among the wider dwarfism community.</p>
<h2>Exploiting oppression</h2>
<p>There are clear historical links between dwarf comedy acts and the oppression of this community. A recent BBC4 documentary <a href="https://www.bbc.co.uk/programmes/b0bgffgg">Dwarfs in Art: A New Perspective</a> demonstrated how dwarfs have often been the subject of ridicule throughout history. Not least during the times of the freak show when many were not even afforded their own names, let alone their own liberty. <a href="https://www.britannica.com/biography/Charles-Stratton">Charles Sherwood Stratton</a>, for example, was taken as a child by P T Barnum and used in his circus acts under the name of <a href="https://www.bbc.co.uk/news/blogs-ouch-30034409">Tom Thumb</a> .</p>
<p>The documentary also noted occasions when people with dwarfism were sold or presented to royal households as pets – objects of pleasure for their non-disabled owners’ gaze.</p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/237901/original/file-20180925-149970-vzz75i.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/237901/original/file-20180925-149970-vzz75i.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=987&fit=crop&dpr=1 600w, https://images.theconversation.com/files/237901/original/file-20180925-149970-vzz75i.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=987&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/237901/original/file-20180925-149970-vzz75i.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=987&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/237901/original/file-20180925-149970-vzz75i.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=1241&fit=crop&dpr=1 754w, https://images.theconversation.com/files/237901/original/file-20180925-149970-vzz75i.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=1241&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/237901/original/file-20180925-149970-vzz75i.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=1241&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Queen Henrietta Maria of France (1609-69) and her dwarf, Jeffery Hudson (1619-82), by Anthonis van Dyck.</span>
<span class="attribution"><span class="source">Wikimedia Commons</span></span>
</figcaption>
</figure>
<p>The Dwarfanators wrestling show has reignited these fears. There is consensus between all involved that the acts and freak shows of the Victorian era were exploitative and oppressive. But are things any different today? How can an exploitative and oppressive show from a century ago be remodelled as a bastion of liberation and proof of progressive disability rights? </p>
<p>The wrestlers have all repeatedly stated that the difference between the past and the present is down to choice. As a doctoral researcher investigating demographics within the dwarfism community, I am left scrutinising this voyeuristic gaze in the visual aesthetics of dwarf wrestling. As <a href="https://www.crcpress.com/Film-Comedy-and-Disability-Understanding-Humour-and-Genre-in-Cinematic/Wilde/p/book/9781472455451">Alison Wilde</a> argues, cultural portrayals of disability can either act as “a mechanism for the transformation of prejudicial attitudes which discriminate”, or they can legitimise existing narratives and “perpetuate cultural, social, and economic inequalities”. </p>
<p>I feel that the Dwarfanators have missed an opportunity for the former, and have done nothing to help the latter.</p><img src="https://counter.theconversation.com/content/103628/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Kelly-Mae Saville is a family affiliated member of the Restricted Growth Association</span></em></p>Dwarf wrestling is a spectacle that harks back to the Victorian age of ‘freak shows’.Kelly-Mae Saville, Doctoral Researcher, Aston UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1010272018-08-06T06:25:33Z2018-08-06T06:25:33ZEssays On Air: The female dwarf, disability, and beauty<figure><img src="https://images.theconversation.com/files/230531/original/file-20180803-41320-lpvm92.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Detail from Little Big Woman: Condescension, Debra Keenahan, 2017.</span> <span class="attribution"><span class="source">Designed and made by Debra Keenahan, Photograph by Robert Brindley., Author provided (No reuse)</span>, <span class="license">Author provided</span></span></figcaption></figure><p>For centuries, women with dwarfism were depicted in art as comic or grotesque fairytale beings. But artists are challenging these portrayals and notions of beauty and physical difference.</p>
<p><a href="https://theconversation.com/au/topics/essays-on-air-48405">Essays On Air</a>, a podcast from The Conversation, brings you the best and most beautiful writing from Australian researchers.</p>
<p>Today, Western Sydney University researcher Debra Keenahan is reading her essay, titled <a href="https://theconversation.com/friday-essay-the-female-dwarf-disability-and-beauty-84844">The female dwarf, disability, and beauty.</a></p>
<p>Find us and subscribe in <a href="https://itunes.apple.com/au/podcast/essays-on-air/id1333743838?mt=2">Apple Podcasts</a>, in <a href="https://play.pocketcasts.com/">Pocket Casts</a> or wherever you get your podcasts.</p>
<h2>Additional audio</h2>
<p>Snow by <a href="http://freemusicarchive.org/music/David_Szesztay/Cinematic/Snow">David Szesztay</a></p>
<p>Oboe Sonata in C minor “Farewell” by <a href="https://freemusicarchive.org/music/Dee_Yan-Key/Oboe_Sonata_in_C_minor_Farewell/">Dee Yan Key</a> </p>
<p>Game of Thrones quote from <a href="https://www.hbo.com/game-of-thrones">HBO</a> (used under fair dealing)</p>
<p>Sound effects from <a href="http://www.orangefreesounds.com/">Orange Free Sounds</a> and <a href="https://freesound.org/browse/">Free Sound</a></p>
<p><em>Today’s episode was recorded by Sunanda Creagh and edited by Jerwin De Guzman.</em></p><img src="https://counter.theconversation.com/content/101027/count.gif" alt="The Conversation" width="1" height="1" />
For centuries, women with dwarfism were depicted in art as comic or grotesque fairytale beings. But artists are challenging these portrayals and notions of beauty and physical difference.Sunanda Creagh, Senior EditorJerwin De Guzman, Multimedia InternLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/848442017-11-02T19:04:43Z2017-11-02T19:04:43ZFriday essay: the female dwarf, disability, and beauty<blockquote>
<p>There is no exquisite beauty … without some strangeness in the proportion.</p>
</blockquote>
<p><a href="https://poestories.com/read/ligeia">Edgar Allen Poe’s words</a> have a particular irony for me. I am a woman with achondroplasia dwarfism, or what is commonly referred to as “disproportionate dwarfism”. Individuals with my physicality have arms and legs significantly shorter than the average person and thus out-of-proportion to our torso, which is usually of average height. </p>
<p>According to contemporary Western standards of beauty, a woman with such disproportions would not popularly be described as beautiful. The implication seems to be that physical difference and disability cannot be considered attractive. </p>
<p>The representation of female dwarfs in the visual arts mirrors the social attitudes towards people with this physical difference. When dwarfs were viewed positively, such as in ancient Egypt, they were portrayed participating in the full spectrum of life - even worshipped as Gods. But more often, especially in the 20th century, dwarfs have been depicted in the arts in demeaned social roles: comically or as grotesque fairytale beings. </p>
<p>Today, people with dwarfism, and women in particular, are still subject to stigma, stereotyping and discrimination. Pop culture continues some of these problematic representations. The US reality TV show <a href="http://www.imdb.com/title/tt3761278/">Little Women</a> harks back to the voyeurism of circus founder P. T. Barnum but with an explicit display of female flesh and titillating foibles. </p>
<p>There is also still a clear gender disparity in the depictions of male and female dwarfs. Tyrion Lannister in <a href="http://www.imdb.com/title/tt0944947/">Game of Thrones</a> is portrayed as intelligent with an acute sense of social justice. Despite Tyrion’s weakness for alcohol, his sexual exploits could not be considered more risque than others in the story-line. While Tyrion is treated seriously and as a character with agency, the women of Little Women seem to be objects of mirth who are shallow.</p>
<p>However a growing number of artists, including myself, are challenging the idea that women with dwarfism cannot be beautiful thanks to their “disability”. In fact, I argue that rather than seeing disability as something inherent to a person we should see it as a product of social and physical environments.</p>
<p><a href="https://debrakeenahan.com.au/">My own sculptural work</a> represents a style of interaction all too often experienced by people of extreme short stature. That is, being spoken to like a child rather than an adult and an equal. The white marble finish of my sculpture Little Big Woman: Condescension is reminiscent of Greek statues - often considered the epitome of classical beauty. </p>
<p>The three figures in this sculpture are back-to-back, gazing out upon the viewer. Moreover, the work is raised so that a person of average height walks around it and has the experience of always being looked at by the female dwarf. Thus the work reverses what is my daily experience.</p>
<p>I also recently performed in <a href="https://www.thebiganxiety.org/events/little-big-woman/">The Big Anxiety Festival’s Awkward Conversations</a>, where I invited people to figuratively walk for 10 minutes in my shoes. By walking the Sydney streets in my company, participants witnessed a variety of public behaviours towards me. </p>
<p>Each performance gave them insight into the dynamics of interaction - sometimes subtle (glances, smirks), sometimes overt (mocking, insults) - that are disabling to a person with dwarfism. </p>
<h2>Returning the gaze</h2>
<p>Dwarfism has been a source of fascination for centuries, in writings, paintings, sculptures and photographs. From artworks, anthropologists have established that the ancient Egyptians had two gods (Bes and Besette) who were dwarfs; and that the Mayan Indians fully integrated dwarfs in their culture. However women with dwarfism were largely absent in art until the royal courts of the 15th century. </p>
<p>During this time of royal favour, dwarfs appeared more frequently in paintings. They were granted the prestige and freedom of being allowed to make cynical commentary on court proceedings with relative impunity. Art works capturing the court dwarf either with the royal hound or in the performance of their duties were not uncommon.</p>
<p>One of the earliest painted depictions of a female with achondroplasia was in a fresco by Mantegna during the Italian Renaissance (1474). </p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/190108/original/file-20171013-31418-jzmhhj.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/190108/original/file-20171013-31418-jzmhhj.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/190108/original/file-20171013-31418-jzmhhj.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=391&fit=crop&dpr=1 600w, https://images.theconversation.com/files/190108/original/file-20171013-31418-jzmhhj.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=391&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/190108/original/file-20171013-31418-jzmhhj.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=391&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/190108/original/file-20171013-31418-jzmhhj.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=492&fit=crop&dpr=1 754w, https://images.theconversation.com/files/190108/original/file-20171013-31418-jzmhhj.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=492&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/190108/original/file-20171013-31418-jzmhhj.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=492&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">Andrea Mantegna, The Court of Mantua, fresco in the Ducal Palace, Mantua, Italy.</span>
<span class="attribution"><a class="source" href="https://commons.wikimedia.org/wiki/File:Andrea_Mantegna_054.jpg">Wikimedia</a></span>
</figcaption>
</figure>
<p>Over the next two centuries, most images of achondroplasia were of men, or of female dwarfs with rarer proportional dwarfism, such as the <a href="https://www.royalcollection.org.uk/collection/407377/the-infanta-isabella-clara-eugenia-1566-1633-archduchess-of-austria">painting by Frans Pourbus the younger</a> of Isabella, Archduchess of Austria, and her dwarf around 1600.</p>
<p>But undoubtedly, the most prominent representation of a woman with achondroplasia is by the Baroque painter Velazquez in his masterpiece Les Meninas (1656).</p>
<p>Velasquez painted a series of portraits of dwarfs who were members of the Spanish Royal court. Of those works only one other - Prince Balthasar Charles (Carlos) with a Dwarf (1631) - represents a female dwarf, and she is a child. </p>
<p>Both Mantegna and Velasquez’s works clearly communicate the women’s lesser social status. Though they may have been valued members of royal courts and their cynical commentary tolerated, these dwarfs were predominantly amusements, novelties and “pets”. </p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/190110/original/file-20171013-31395-quh1u1.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/190110/original/file-20171013-31395-quh1u1.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/190110/original/file-20171013-31395-quh1u1.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=691&fit=crop&dpr=1 600w, https://images.theconversation.com/files/190110/original/file-20171013-31395-quh1u1.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=691&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/190110/original/file-20171013-31395-quh1u1.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=691&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/190110/original/file-20171013-31395-quh1u1.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=868&fit=crop&dpr=1 754w, https://images.theconversation.com/files/190110/original/file-20171013-31395-quh1u1.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=868&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/190110/original/file-20171013-31395-quh1u1.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=868&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">Diego Velázquez, Las Meninas, 1656.</span>
<span class="attribution"><a class="source" href="https://en.wikipedia.org/wiki/Las_Meninas#/media/File:Las_Meninas,_by_Diego_Vel%C3%A1zquez,_from_Prado_in_Google_Earth.jpg">Wikimedia</a></span>
</figcaption>
</figure>
<p>However, these particular artists also present the adult female dwarf employing the “oppositional gaze”. Rather than demurring to the viewer, these women stare back at us, demanding that we take them on their own terms. Unfortunately, such assertive, respectful representation of typically maligned and marginalised people dissipated significantly and quickly soon after.</p>
<h2>Freak show</h2>
<p>Throughout the Rococo period in the 18th century there were more paintings of female dwarfs, but these were predominantly portrayed en masse in fantastical and somewhat perverted scenes. The most notable is the series of six paintings by Faustino Bocchi, including Festo dopo le nozze (or “wedding celebration”) and Grotesque Parody of an Accouchement (or “childbirth”).</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/192756/original/file-20171031-32619-19f9lj6.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/192756/original/file-20171031-32619-19f9lj6.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/192756/original/file-20171031-32619-19f9lj6.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=462&fit=crop&dpr=1 600w, https://images.theconversation.com/files/192756/original/file-20171031-32619-19f9lj6.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=462&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/192756/original/file-20171031-32619-19f9lj6.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=462&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/192756/original/file-20171031-32619-19f9lj6.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=580&fit=crop&dpr=1 754w, https://images.theconversation.com/files/192756/original/file-20171031-32619-19f9lj6.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=580&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/192756/original/file-20171031-32619-19f9lj6.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=580&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">Faustino Bocchi, Festa dopo le nozze.</span>
<span class="attribution"><a class="source" href="https://commons.wikimedia.org/wiki/Category:Paintings_of_dwarfs_by_Faustino_Bocchi#/media/File:Faustino_Bocchi._Festa_dopo_le_nozze,_olio_su_tela,_50x65,_collezione_privata,_Bergamo.jpg">Wikimedia</a></span>
</figcaption>
</figure>
<p>Fascination with people who were physically different became an overt public pastime. The capture of the image of the female dwarf became both a visual record and an opportunity for commercial profit.</p>
<p>The 19th century saw the introduction of photography for public consumption and brought with it an increase in the portrayal of the female dwarf, but with little change in her social status. </p>
<p>During the 19th and early-20th centuries photos were used to promote “freak shows” in circuses. These became an avenue for promoters, such as circus founder P. T. Barnum, to offer dwarfs a living beyond poor houses. In the display of their physical differences, the troupe members were exhibited as passive subjects for the gaze of the paying public.</p>
<p>The promotional banter of the day popularised the term “midget” to refer to someone of short stature - a label today considered deeply offensive and insulting. Moreover, the unabashed publicity of dwarfs focused upon titillating fascination with their private lives and blatant comparisons with the average individual. </p>
<p>Documentary photos subsequently reinforced dwarfs as passive objects of curiosity, whose details about physical proportions and functioning were available for public entertainment - at the mere cost of the entry ticket! For the marriage of Charles Sherwood Stratton (General Tom Thumb) to Lavinia Warren, P. T. Barnum even sold tickets to the reception to the first 5,000 applicants.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/190118/original/file-20171013-31431-1a2ac50.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/190118/original/file-20171013-31431-1a2ac50.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/190118/original/file-20171013-31431-1a2ac50.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=663&fit=crop&dpr=1 600w, https://images.theconversation.com/files/190118/original/file-20171013-31431-1a2ac50.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=663&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/190118/original/file-20171013-31431-1a2ac50.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=663&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/190118/original/file-20171013-31431-1a2ac50.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=833&fit=crop&dpr=1 754w, https://images.theconversation.com/files/190118/original/file-20171013-31431-1a2ac50.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=833&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/190118/original/file-20171013-31431-1a2ac50.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=833&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">The marriage of Lavinia Warren to Charles Sherwood Stratton.</span>
<span class="attribution"><span class="source">Wikimedia</span></span>
</figcaption>
</figure>
<p>The images used to promote freak shows clearly emphasised the strangeness of the proportions of the female dwarfs with complimentary concession to the quality of “cuteness”. There was no attempt to present any idea of beauty. </p>
<p>Disproportionate dwarfs did not fare any better with their representations in modern art, where they were juxtaposed with giants, everyday objects or average people. However a new discourse entered the visual narrative - that of the sad, pathetic, ridiculous, isolated, little person. </p>
<p>Famous photographs by <a href="http://gibbesmuseum.pastperfectonline.com/photo/C12344F1-8FFB-4B93-A84F-655423924800">Arthur Fellig</a> and <a href="http://pro.magnumphotos.com/C.aspx?VP3=CMS3&VF=MAGO31_10_VForm&ERID=24KL53ZTH6#/CMS3&VF=MAGO31_10_VForm&ERID=24KL53ZTH6&POPUPIID=2K7O3R3DLE89&POPUPPN=2">Bruce Davidson</a> are the epitome of such stereotyping. The portrayal of women with achondroplasia was virtually nonexistent in this era, with the notable exception of a World War II photo of The Ovitz Family in 1944, a Jewish family imprisoned in Auschwitz and experimented on by Nazi scientist Josef Mengele. </p>
<h2>Disability aesthetics</h2>
<p>Other artists have explicitly examined the sexuality of the female dwarf, such as the beautifully executed contemporary <a href="http://www.margaretbowland.com/earlier-works/">paintings of Margaret Bowland</a>. Such work typifies the approach of many contemporary photographers and painters who often present these physically unique individuals as on the fringes of society. </p>
<p>In recent years, there has been a critical shift in how disability is viewed - including standards of beauty - drawing on the ever-expanding academic field of disability studies. For myself, I often say that my dwarfism does not disable me, rather, what disables me most is people’s attitudes to it. Because it is negative attitudes that result in unnecessary limitations being placed upon me.</p>
<p>Art can play a powerful role in challenging this ableism - the discrimination of those who are physically or mentally different. Artworks that challenge stereotypes around the physically different can encourage inclusion.</p>
<p>The scholar Tobin Siebers has developed the concept of “<a href="https://www.press.umich.edu/pdf/9780472071005-ch1.pdf">disability aesthetics</a>”, which “embraces beauty that seems … to be broken, and yet it is not less beautiful, but more so, as a result”. However <a href="https://debrakeenahan.com.au/">I argue </a> that in this definition, Siebers is buying into the subjective beauty/ugly divide that excludes people with disabilities in the first place. </p>
<p>Many contemporary artists with dwarfism, including myself, are changing the conversation altogether, moving from focusing on physical difference to social treatment. <a href="http://www.amandacachia.com/curating/composing-dwarfism-reframing-short-stature-contemporary-photography/">Ricardo Gil’s street photography</a> captures the disdain and overt hostility sometimes directed at himself. While his photos do not always depict people with dwarfism, their perspective shows that of a person with dwarfism on the street. </p>
<p><a href="http://www.lauraswanson.com/#/anti-self-portraits/">Laura Swanson’s photography</a> parodies society’s exclusion of dwarfs through compositions that strategically remove her individual features from the portraits. Instead, she covers her face and body with everyday objects such as a coat on a hallway stand or an album cover. </p>
<p>The lesson learnt is that how you treat me communicates whether you consider me “a midget”, an amusement, or an equal.</p><img src="https://counter.theconversation.com/content/84844/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Debra Keenahan receives funding from Australia Council for the Arts as a recipient of a Development Grant. She is affiliated with Outlandish Arts as a Board Member. </span></em></p>For centuries, women with dwarfism were depicted in art as comic or grotesque fairytale beings. But artists are challenging these portrayals and notions of beauty and physical difference.Debra Keenahan, Lecturer, Humanitarian And Development Studies, Western Sydney UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/823042017-09-01T00:23:42Z2017-09-01T00:23:42ZWorth reading: Bananas, dwarves, salt and love<figure><img src="https://images.theconversation.com/files/184277/original/file-20170831-22427-1o1ookj.jpg?ixlib=rb-1.1.0&rect=333%2C2%2C1480%2C1077&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">A banana on the salt lake plain at Salar de Uyuni, Bolivia, hints at themes of genetics, food and human journeys in three books recommended by fly scientist Thomas Merritt.</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/banana-on-salt-lake-background-salar-641084434?src=jug1_8IDd40Vz6pzAVQw1A-1-11">Shutterstock</a></span></figcaption></figure><p><em>Editor’s note: The Conversation Canada asked our academic authors to share some recommended reading. In this instalment, Thomas Merritt, a fly scientist who wrote about <a href="https://theconversation.com/sex-matters-male-bias-in-the-lab-is-bad-science-80715">male bias in science laboratories</a> (and <a href="https://theconversation.com/how-to-kill-fruit-flies-according-to-a-scientist-81740">how to kill fruit flies</a>) highlights three books on his list of top reads.</em> </p>
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<a href="https://images.theconversation.com/files/184291/original/file-20170901-32045-sd7nob.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/184291/original/file-20170901-32045-sd7nob.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/184291/original/file-20170901-32045-sd7nob.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=903&fit=crop&dpr=1 600w, https://images.theconversation.com/files/184291/original/file-20170901-32045-sd7nob.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=903&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/184291/original/file-20170901-32045-sd7nob.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=903&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/184291/original/file-20170901-32045-sd7nob.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=1135&fit=crop&dpr=1 754w, https://images.theconversation.com/files/184291/original/file-20170901-32045-sd7nob.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=1135&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/184291/original/file-20170901-32045-sd7nob.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=1135&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption"><em>Banana</em> by Dan Koeppel.</span>
<span class="attribution"><span class="source">Handout</span></span>
</figcaption>
</figure>
<h2><a href="https://www.goodreads.com/book/show/1260005.Banana"><em>Banana</em></a></h2>
<p>By Dan Koeppel (Non-fiction. Paperback, 2008. Plume.)</p>
<p>Bananas have shaped the modern world but may no longer exist — at least in their current form — in our not-so-distant future. As a kid raised on bananas, I can appreciate the first idea, and find the second hard to believe. But it’s true. </p>
<p>Koeppel tells both of these stories well, tying each together, and leading the reader through the nefarious past and questionable future of a fruit that many of us grew up on and most of us take for granted. The book ties social history, political science, economics, genetics and disease biology together to tell an engaging, and sobering, story of the global history of one of agriculture’s — and breakfast’s — most important players.</p>
<p> </p>
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<a href="https://images.theconversation.com/files/184286/original/file-20170831-2020-fhjsg3.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/184286/original/file-20170831-2020-fhjsg3.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/184286/original/file-20170831-2020-fhjsg3.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=902&fit=crop&dpr=1 600w, https://images.theconversation.com/files/184286/original/file-20170831-2020-fhjsg3.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=902&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/184286/original/file-20170831-2020-fhjsg3.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=902&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/184286/original/file-20170831-2020-fhjsg3.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=1134&fit=crop&dpr=1 754w, https://images.theconversation.com/files/184286/original/file-20170831-2020-fhjsg3.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=1134&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/184286/original/file-20170831-2020-fhjsg3.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=1134&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption"><em>Mendel’s Dwarf</em> by Simon Mawer.</span>
<span class="attribution"><span class="source">Handout</span></span>
</figcaption>
</figure>
<h2><a href="https://www.goodreads.com/book/show/98781.Mendel_s_Dwarf"><em>Mendel’s Dwarf</em></a></h2>
<p>By Simon Mawer (Fiction. Paperback, 1999. Penguin.)</p>
<p>This is the story of a geneticist, Dr. Benedict Lambert, struggling with himself, his science and his heart. Lambert is a genetic anomaly. In fact, we all are genetically unique but in Lambert’s case, his unique genetics are immediately apparent to all: He has achondroplasia — dwarfism. </p>
<p>He is also a man in love. Unrequited love. Mawer weaves a wonderful tale connecting Lambert, Gregor Mendel (often called the father of modern genetics), human genetics and love. The story and the writing are wonderful, smart and engaging. The science is very well done and woven into the story without overwhelming it. This is the kind of novel that I love to read and wish I could write.</p>
<p> </p>
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<figcaption>
<span class="caption"><em>The Salt Roads</em> by Nalo Hopkinson.</span>
<span class="attribution"><span class="source">Handout</span></span>
</figcaption>
</figure>
<h2><a href="https://www.goodreads.com/book/show/57498.The_Salt_Roads"><em>The Salt Roads</em></a></h2>
<p>By Nalo Hopkinson (Fiction. Hardcover, 2008. Warner.)</p>
<p>Jamaican-Canadian speculative fiction author <a href="http://nalohopkinson.com/">Nalo Hopkinson</a> weaves together a haunting, intricate and absorbing series of stories across centuries and continents, joined by a spiritual entity inhabiting a series of women. The work branches from mythology, to witchcraft, to historical fiction to tell the tales of three women united by beauty, sorrow and hardship. </p>
<p>Hopkinson’s work is fantastic, twisted, turning, challenging and engaging. Her work defies easy description but combines fantasy, science fiction and erotic macabre — think <a href="http://www.jeanettewinterson.com/">Jeanette Winterson</a> or <a href="https://usa.angelacarter.co.uk/">Angela Carter</a>. This novel isn’t an easy read, but it’s infectious and rewarding in its twists, turns and beauty.</p><img src="https://counter.theconversation.com/content/82304/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Thomas Merritt receives funding from The Natural Sciences and Engineering Research Council and The Canada Research Chairs Program. </span></em></p>A fly scientist ponders the genetics of bananas and dwarves, women and love in reviews of his favourite fiction and non-fiction books.Thomas Merritt, Professor and Canada Research Chair, Chemistry and Biochemistry, Laurentian UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/505272015-12-02T19:28:35Z2015-12-02T19:28:35ZNew dwarfism drug shows how innovation can be done well<figure><img src="https://images.theconversation.com/files/103640/original/image-20151130-10243-1arm3f8.jpg?ixlib=rb-1.1.0&rect=146%2C0%2C988%2C622&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">A new treatment for achondroplasia is helping to transform many kids' lives.</span> <span class="attribution"><span class="license">Author provided</span></span></figcaption></figure><p>Sara was born on a rainy Sunday, the first child to her adoring and overwhelmed parents. Her mother’s pregnancy had been uneventful, and all their antenatal tests normal. </p>
<p>Then someone examined her and ordered X-rays. Next, her unbelieving parents were being told that their gorgeous baby had a genetic bone growth disorder, a form of dwarfism, with a nearly unpronounceable name, <a href="http://ghr.nlm.nih.gov/condition/achondroplasia">achondroplasia</a>. </p>
<p>Sara would be short – maybe 130cm – and at risk of several medical complications that might require surgery, including on her neck and spinal cord. </p>
<p>The condition was the result of a mutation in a gene called <a href="http://ghr.nlm.nih.gov/gene/FGFR3">FGRF3</a>, occurring out of the blue, with no family history required. </p>
<p>“What can be done to treat this?” is the first question her parents asked, and was met with embarrassed silence on my part.</p>
<h2>Hope springs</h2>
<p>As a physician who is supposed to be an expert in genetic bone disorders, I found it deeply unsatisfying that there was no treatment for achondroplasia, the most common form of dwarfism, other than treating the symptoms.</p>
<p>The gene causing the condition had been discovered more than 20 years ago, and much has been learnt about how the genetic fault impacts bone growth. Little has advanced in terms of treatment. Human growth hormone has been tried, but had no long-term benefits and posed risks. </p>
<p>However, the beginnings of a possible therapy arose when it was discovered that a small molecule, called CNP, thought to be involved in maintaining the body’s sodium balance, was also an important bone growth regulator. It acted by blocking the FGFR3 pathway responsible for achondroplasia. </p>
<p>Further evidence that CNP could have a therapeutic role in achondroplasia was provided when under-the-skin infusions were used to correct the bone changes of a mouse model with this condition.</p>
<p>I soon became aware of this exciting research with its potential implications for my patients with achondroplasia. By chance, it coincided with a biennial medical conference devoted to bone disorders in Australia that I was convening. </p>
<p>By now, the molecule CNP had been adopted and modified by a pharmaceutical company called <a href="http://www.biomarin.com/">BioMarin</a>. The company’s researchers had cleverly modified its protein structure to make it resistant to digestion in the stomach, giving it a longer half-life. This raised the tantalising possibility of administration by single daily subcutaneous injection, like insulin is given to diabetics. </p>
<p>I invited them to present their latest data at our meeting, held in far northern Queensland in mid-2011. The results were compelling. They showed that the modified CNP, called BMN-111, reversed the bony changes in the skull, spine and long-bones in mice with achondroplasia. </p>
<p>It was the first clear evidence that this molecule could be a tailored treatment for achondroplasia, acting by blocking the abnormal FGFR3 signal, allowing normal bone growth to resume. </p>
<h2>Transformational</h2>
<p>Over the next 12 months, BMN-111 was tested in monkeys to further assess possible side effects and impact on bone growth, and in healthy male adult volunteers. </p>
<p>In 2012, working closely with BioMarin, we began recruiting children aged four to 13 years with achondroplasia, into a six month pre-drug growth trial. We very carefully made measurements of their growth and body proportions. We did this so we could assess the effects of drug treatment with BMN-111 on growth in terms of each individual child compared to their growth prior to drug therapy. </p>
<p>This then led to the first ever clinical drug trial in children with achondroplasia. It was designed as an open-label, dose escalation trial in which only active drug would be given. We recruited three cohorts of eight children, with each cohort receiving higher doses of BMN-111. With equal measures of excitement and trepidation, I injected our first patient with this drug in early 2013. </p>
<p>To date, 36 children are receiving the drug worldwide, and our Melbourne site, located at Murdoch Children’s Research Institute and Royal Children’s Hospital, is the largest centre. </p>
<p>It appears the drug is safe, with no serious adverse events to date, and preliminary data on effectiveness have been very encouraging. Analysis of the first six months of treatment has shown a 50% increase in growth velocity when compared with six months growth pre-drug in the third cohort, with no serious adverse events in this group. </p>
<p>Based on these encouraging data, the trial has been extended for a further two years and it is hoped other impacts will include better spinal and skull bone growth, decreasing or preventing the need for surgery in these children.</p>
<p>While it’s early days, this drug therapy for achondroplasia could transform the lives of these kids, and minimise their medical complications. It could not have been done without innovation, partnerships, courage and dreaming big on the part of all involved, especially the children and parents. They have put their faith in this trial and our care.</p>
<p>It’s also an innovation success story, which is crucially important in this time where innovation is being touted as crucial for our nation’s future prosperity. In medicine and science, research partnerships with industry (including “big pharma”) are sometimes frowned upon as slightly “dodgy”, yet without these crucial liaisons this story would have never been possible. </p>
<p>Innovative ideas must be translated into life-changing health interventions through good business partnerships, run ethically and responsibly, yielding dividends for patients and shareholders alike.</p><img src="https://counter.theconversation.com/content/50527/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Professor Ravi Savarirayan receives funding from Biomarin Pharmaceuticals Inc. in the capacity of a Principal Investigator to oversee the achondroplasia clinical trial.</span></em></p>A collaboration between research and industry has produced a promising new drug that could transform many childrens’ lives. It’s also a case study in innovation done right.Ravi Savarirayan, Professor of Human (Clinical) Genetics, Murdoch Children's Research InstituteLicensed as Creative Commons – attribution, no derivatives.