Tuesday, 24 April 2018

Is ‘Disability’ a feminist issue?

Introduction

Disability rights is a conversation often neglected within Australian policy, culture and academia. Just like intersections of gender and race, disability is another marginalised group which experiences varying forms of disadvantage. Similarly, disability is recognised as a social construct (Frohmader & Salthouse, 2004). [1]

Globally, 1 in 7 people (1 billion) live with disabilities. Although people with disabilities have the same general health needs as people without disability, they are: [6]
  • 2 times more likely to receive inadequate health care
  • 3 times more likely to be denied health care
  • 4 times more likely to be treated poorly in the health care system

In Australia, 20% of the female population live with disabilities. Due to the intersecting categories of gender and disability (and any others e.g. race, class), women with disabilities are found to experience double-discrimination. This results in women with disabilities as experiencing higher levels of discrimination than men living with disabilities do and women without. This ableism, or discrimination against people living with disabilities, restricts options/opportunity for economic, social and political life. Discrimination is experienced attitudinally, economically, politically, psychologically and socially. [1]

Statistics

Rates of disadvantage in women living with disabilities is estimated in the following categories:
  • Employment/Education/Income [1]
  • 51% of women with disabilities earn less than $200/week, compared to 36% of men who live with disabilities
  • 16% of women with disabilities earn over $400/week, compared to 33% of men with disabilities
  • 28% of men with disabilities are likely to have a secondary education, compared to 16% of women with disabilities
  • Government funded, Open Employment and Disability services, assists men with disabilities at two times the rate of assisting women
  • Over-represented in public-housing, comprising of 40% of all tenants

Abuse [7]
  • 40% more likely to be victims of domestic abuse than women without disabilities
  • 70% of women with disabilities have been victims of sexual assaults
  • Women with disabilities are 10 times more likely to experience sexual harassment
  • Women with intellectual disabilities are 10 times more likely to be assaulted
  • More than one quarter of rape cases in Australia are reported to have been against women with disabilities
  • More than two thirds of women with intellectual disabilities have been subject to sexual abuse before the age of 18

Crime [7]

Crimes against women with disabilities often go underreported, and when they are reported the investigations are inadequate, remain unsolved and result in minimal sentencing
Women with disabilities are far less likely to be believed

Definition of Disability

One of the difficulties with disability is the lack of a wholistic definition. The World Health Organisation (WHO) previously defined disability as:

‘Disability’ refers to ‘any restriction or lack of ability to perform an activity in the manner or within the range considered normal for a human being’. Disability may affect hearing, vision, intellectual functioning, learning, mobility, speech and/or mental health. It may also be the result of medical conditions such as epilepsy, Multiple Sclerosis, Parkinson’s Disease or AIDS/HIV.

This definition is based on the Biomedical Model. This model is critiqued by health and disability advocates as limited and problematic as it does not address causes of burden outside the body itself. Chadwick (1994) states that this approach leads to ‘victim-blaming’ stereotypes, stating that the problem is seen as residing from “within” the individual. [1]

The preferred model is the Social Model of disability which does not define disability as an outcome of bodily pathology, but rather as a social organisation. The social model defines discrimination within society as the obstacle to full community participation. These include: [1]

  • Built environment (e.g. no wheelchair ramps or rails)
  • Little community awareness/education (e.g. no mainstream schooling of Auslan - sign language)
  • Community attitudes (e.g. hostility or under-estimation in abilities)

What is domestic violence (DV)?

 DV is violent or intimidating behaviour meant to control, dominate, humiliate or scare another person. Abuse can be done against a man or a woman, but most commonly by a man against a woman. Abuse can be perpetuated by an intimate partner, parent, family member, carer or other person whom wishes to assert power over the other. Types of domestic abuse include: [2]

  • Verbal abuse, e.g. swearing, ongoing public or private humiliation, belittling
  • Psychological abuse, e.g. destroying property, abusing pets, threatening the custody of children, saying the police/courts could not help the victim
  • Emotional abuse, e.g. blaming the victim for relationship issues, emotional blackmail, suicide threats, undermining self-esteem/self-worth
  • Social abuse, e.g. isolating from family and friends, limiting outside contact, restricting car or telephone use
  • Financial abuse, e.g. controlling access to bank accounts, providing only small allowance, not allowing victim to have a job
  • Physical abuse, e.g. direct assault (choking, shaking, spitting, hitting), use of weapons or objects, assault of children, forcing victim from take drugs, withholding medication, neglect of care
  • Sexual abuse, e.g. any unwanted sexual acts, assaulting genitals, forced unsafe sexual acts, making victim perform unwanted sexual acts, using sexual insults
  • Stalking, e.g. following/watching, online harassment, GPS tracking, entering property without permission

Women, Disability and Abuse
  • 1 in 3 women experience domestic assault at some point in their lives.
  • For women living with disabilities, this number rises by 40%.
  • And 10 times higher chance of being sexually assaulted.

 Women living with disabilities are more susceptible to domestic violence and abuse due to the power imbalance. Many women with disabilities are acutely aware of their own powerlessness. Sobsey (1994) describes that people with disabilities often have limited skills and knowledge to protect themselves, adding to these power inequalities. [1]

When faced with danger, there are difficulties in attempting to escape: physical means of fleeing, access to transport, lack of place of refuge. Even if/after the woman has escaped, barriers to services can be grouped in the following categories: communication, information, attitudes, physical environment, lack of disability trained workers.

 Seeking support systems after abuse: family and friends are the first line of support. Unfortunately, for people with disabilities, ‘family’ often does not exist as a support system, because commonly, family is the site of oppression [1]. Thus, services and organisations are often an early point of contact for many people with disabilities.



Policy and Governance

The 2017 DPO Australia Report stated that women’s rights are an urgent unaddressed issue:

The National Plan to Reduce Violence Against Women and their Children 2010-2022, is designed to prevent violence against women. However, many forms of violence perpetrated against women and girls with disability and the settings where such violence occurs, remain outside the scope of the National Plan. [3]

National Disability Strategy 2010-2020 (NDS) remains the primary policy framework for people with disability. While there has been critical reform under the NDS, most notably with the implementation of the National Disability Insurance Scheme (NDIS), the NDS is not being driven consistently across government jurisdictions nor does it have the investment or concrete measures needed to deliver on its policy outcome areas.

The Disability Strategy aims to cover six policy areas: [4]
  • Inclusive and accessible communities – physical environment including public transport; parks buildings, housing; digital information and communication technologies; civic life including social, sporting, recreational and cultural life
  • Rights protection, justice and legislation – statutory protections such as anti-discrimination measures, complaints mechanisms, advocacy, the electoral justice systems
  • Economic security – jobs, business opportunities, financial independence, adequate income support and housing
  • Personal and community support – inclusion and participation in the community, person-centred care and support provided by specialist disability services and mainstream services; informal care and support
  • Learning and skills – early childhood and care, schools, further education, vocational education; transitions from education to employment; life-long learning
  • Health and wellbeing – health services, health promotion and the interaction between health and disability systems; wellbeing and enjoyment of life
Urgent Government Change

The main concern is that within the focus of women’s specific issues in the NDS and National Plan to Reduce Violence Against Women and their Children, both address the intersecting issue of women and disability together.

The urgent need for systematic accurate collection of data about the incidence and nature of the domestic violence experienced by women with disabilities must begin. National, state and territory initiatives, policies and programs must be formulated, and followed up regularly. [1]

 Additionally, community visibility, action and programs about the local issues which women with disabilities face should become an issue in public consciousness. This can be done through school education programs, advertising, and screenings or programs. These should include and educate local women with disabilities as well as the wider public.

Other Organisations for People with Disabilities
  • The Disabled Peoples Organisation (DPO) Australia is an umbrella organisation supported by the following organisations: [3]
  • Women with Disabilities Australia (WWDA)
  • National Ethnic Disability Alliance (NEDA)
  • First People’s Disability Network (FPDN)
  • People with Disability Australia (PWDA)
  • Children and Young People with Disability Australia (CYDA)
  • Australian Federation of Disability Organisations (AFDO)
  • Intersex International Australia (OII)
  • Australian Centre for Disability Law Speech Pathology Australia Organisation
  • Disability Advocacy Network Australia (DANA)


WWDA is the national peak body representing women with all types of disabilities in Australia



Useful Numbers and Hotlines [5]

To report abuse or neglect call 1800 880 052 or TTY for callers with hearing impairments call 180 301 130

General People with Disabilities Australia call 1800 422 015 or TTY 1800 422 016

Australian Centre for Disability Law call 02 8014 7000 or TTY 02 9211 5549

Intellectual Disability Rights Service 02 9318 0144

Women With Disabilities Youth Network website http://youth.wwda.org.au/

Article by: Patricia Chaar

References

[1] http://wwda.org.au/issues/viol/viol2001/odds/

[2] http://www.domesticviolence.nsw.gov.au/what-is-domestic-violence

[3] http://wwda.org.au/wp-content/uploads/2017/06/DPOA_Sub_LOI_CRPD.pdf

[4] https://www.dss.gov.au/sites/default/files/documents/05_2012/national_disability_strategy_2010_2020.pdf

[5] http://www.domesticviolence.nsw.gov.au/get-help/disability

[6] http://www.who.int/disabilities/facts/Infographic_en_pdf.pdf?ua=1

[7] https://www.pwd.org.au/documents/temp/FS_Violence_WWD%27s.pdf

Wednesday, 18 April 2018

Artificial Intelligence and the Problem of Bias


When we think of artificial intelligence, we think of it as objective, impartial and unrelentingly logical. But we need to remember that, at one point, AI is programmed to learn by humans. To learn, machines are fed data sets and they can be full of historical or human bias.
Machine learning is something we need consider in the wider community, because as forms of AI increasingly thread into our day-to-day lives, if you’re not male, or white, there could be some problems.

A very easy example first. Take Pokémon Go. When Pokémon Go was released, users in New York found the gyms and PokeStops appearing more in predominantly whiteneighbourhoods
Turns out Pokémon Go was using a crowdsourced dataset from a previous augmented reality game. The people who wrote the algorithms weren’t a diverse group and so their bias ended up in the game.
If diverse groups are required to help create unbiased products then it’s worrying when you consider how unwelcoming the tech industry is to women and people of colour.

Another example is LinkedIn. Women on LinkedIn (a business and employment-oriented service) found they weren’t seeing high-paying jobs as frequently as men. That’s because LinkedIn was selecting men to see the jobs.

Anu Tewary, chief data officer for Mint at Inuit, explained the problem to TechRepublic: “… it was biases that came in from the way the algorithms were written. The initial users of the product features were predominantly male for these high-paying jobs, and so it just ended up reinforcing some of the biases.”

Joy Buolamwini carried out a study of various AI-powered facial recognition software and found that they performed best with white, especially male, faces. When it came to women of colour, there were 34% more errors in recognition. Buolamwini found that when using examples of the darkest-skinned women, the face-detection systems could get their sex wrong close to half the time. This error rate was happening because when building the software, the engineers fed their algorithms primarily images of white males.

Buolamwini highlights that when you train your software with a biased data set, you end up with a biased result.

This is a link to an example where AI learned to associate “woman” with “kitchen” using research image collections.

Machine learning reinforces – it magnifies. If a photoset generally associates women with kitchens, software trained to study the association and the labels assigned will end up creating an even stronger association.

Just look how long it took Tay to turn from Microsoft’s upbeat twitter AI bot to foul-mouthed racist telling feminists to burn in hell. (Note: less than a day). This was the result of jokey-troll tweets but still it makes you question how will we ever teach AI using public data without supplying our public racism and inequality?

What we feed AI matters. Who programs AI matters.

These are low-level examples because AI is still in early stages. But as AI-based systems take on more complex tasks, as we embed more AI into our daily lives, we risk embedding sexism, racism and all our prejudices.

What if we were to use AI for diagnosing in healthcare? Machines can parse loads of information very quickly. But if we use current data about symptoms and treatment, we could end up with incorrect or dangerous analysis.

For example: women can experience heart attack symptoms differently to men – but may be misdiagnosed because the male symptoms are the “typical” ones

Women with endometriosis can take years to get a correct diagnosis because there’s not enough information about the condition. Not to mention pregnant or menstruating women are often left out of medical trials.

This is evidence of biased data. Could feeding this skewed data to a learning machine just exacerbate the inequalities women experience when it comes to healthcare? I would say, yes, it could. We need to consider how we might accidentally contaminate new systems as we expand our thinking to utilise the benefits AI will provide us.

We like to imagine using artificial intelligence in our machines will help us be more logical and less prejudiced. But are we really freeing ourselves from bias? Or are we embedding it for future generations?

By: Tee Linden

Wednesday, 11 April 2018

Louise Lovely: The First Australian to Make it in Hollywood





In the early 1900s, Australia had a well-established film industry while Hollywood was still in its infancy. Most early American silent films were made in New York by companies such as Biograph and Edison Productions. Hollywood began to be a popular production location in the early 1910s. It didn’t take long for it to become the world’s leading film capital. Australia had made the first feature-length film, The Story of the Kelly Gang, in 1906 but was soon lagging behind. Early Australian actors and actresses made the move across the ocean to try their luck in American movies. Louise Lovely was among the first to have a successful career. She appeared in a handful of films at home before gracing the silver screen alongside other big names of the silent era. She was frequently compared to Mary Pickford, the most famous and highest paid actress at the time. She was even considered a rival.

Lovely was born on the 28th February, 1895, in Paddington, a suburb close to Sydney’s CBD. Her parents were of Italian and Swiss descent. She was named Nellie Louise Carbasse. Lovely’s father is unknown; she was raised by her mother. Lovely was more fluent in French than English as a child. This helped her to get her first part, as Little Eva, in the stage play Uncle Tom’s Cabin at age nine. She was noticed by Nellie Stewart, a popular stage actress and singer of the era. In her teens, Lovely joined Stewart’s theatre company and travelled around Australia and New Zealand. The two became close and Stewart took Lovely under her wing. This is where she learnt about acting properly and honed her skills.

Lovely made her first films with the Australian Life Biograph Company. Between 1911 and 1912, she made a handful including One Hundred Years Ago, A Tale of the Australian Bush, A Daughter of Australia and The Ticket of Leave Man. By mid-1912, the Australian Life Biograph Company was bought by Universal Pictures Ltd. Universal was a local company and had no affiliation with the American production entity. Lovely made one film with them, The Wreck of the Dunbar. She was credited as Louise Carbasse on all her Australian movies.


Lovely during a radio interview

She moved to Hollywood with her husband, William Welch, in 1914. Welch was a comedian, writer and actor. Lovely was noticed by Carl Laemmle and he invited her to make a screen test. Laemmle was an influential producer during the silent era. On the strength of her screen test alone, Lovely was offered a contract with Universal Studios and she accepted. Laemmle was the one who coined her Hollywood screen name: Louise Lovely.

Lovely had a very successful career. She was one of Universal’s most popular stars. She appeared in films such as Father and the Boys (1915), Dolly’s Scoop (1916), Bobbie of the Ballet (1916), The Diamonds of Destiny (1917) and The Girl Who Wouldn’t Quit (1918).


Bobbie of the Ballet (1916) Poster

As her contract was coming to an end, Lovely received an offer to work in France by the production company Pathé Frères. She was excited by the idea and its increased pay. Universal wouldn’t match the price with Lovely’s new contract and threatened legal action if she used the name ‘Lovely’ in other productions. Apparently, they held the copyright. Lovely refused to sign the contract and was blacklisted. Over the next year, she acted in a handful of independent films until being picked up by Fox Film Corporation. She appeared in some well received movies—such as The Last of the Duanes and Wings of the Morning—but her career never recovered. Lovely and Welch returned to Australia in 1924.


Lovely in Jonny-on-the-Spot (1919)

Lovely and her husband toured the country with their A Day at the Studio show. They travelled to small country towns and set up a make-shift film studio in the local theatre. The show included a real motion picture camera and professional lighting. They filmed people and then screened the footage the following week. In an entertaining way, the show explained to an audience how a film set operated. It relied heavily on the ‘magic of the movies’ craze and also doubled as a talent search.

While touring Hobart, Lovely was visited by author Marie Bjelke Petersen. She hoped Lovely would adapt her novel Jewelled Nights into a movie. Lovely was intrigued by the idea and bought the rights. She formed Louise Lovely Productions with Welch and raised most of the budget herself. Filming began six days before the company was legally allowed to operate. All outside locations for Jewelled Nights were filmed near Waratah, Tasmania. The area was hot and dangerous. Lovely killed five snakes during the four week schedule. The rest of the filming took place on sound stages in Melbourne. The production was supposed to last four months but took nine. It also ran over budget. Lovely was responsible for producing, acting, editing, co-directing and co-writing. Besides her star billing, she received no other credits.

Jewelled Nights debuted in Hobart. The event included the then Tasmanian Premier, Attorney General and Petersen as special guests. Audience reaction for the film was positive but the opposite with critics. It faded from Australian cinemas and didn’t recoup its budget. Rumours have it that Jewelled Nights was shown as far as New Zealand but never made it to America. In 1927, Lovely stressed to the Royal Commission that Australia needed a better distribution system for local content or the market would be dominated by import films. She blamed this as part of her film’s failure at the box office. They rejected Lovely’s suggestion.


Lovely in Jewelled Nights (1925)

Lovely left the film industry disillusioned by the experience. She had made near 50 films during her career. Her marriage with Welch also broke down and ended in divorce. She remarried and stayed in Tasmania. In 1946, Lovely and her second husband bought the Prince of Wales theatre in Hobart. She was manager until her death on the March 18th, 1980. Locals affectionately remember her as the little old lady who ran the theatre’s lolly shop. No footage exists of Jewelled Nights except two minutes of footage, which is believed to be out takes. In 2000, The Australian Film Institute named their equivalent of the Academy Awards after her.


Lovely publicity photo with autograph


By: Matthew J. Healy



Sources:

Lovely, Louise Nellie (1895–1980) (http://adb.anu.edu.au/biography/lovely-louise-nellie-7248)
Louise Lovely: The silent film star who tried to bring Hollywood to Tasmania (http://www.abc.net.au/news/2017-09-10/remembering-louise-lovely-silent-film-star/8875284)
Louise Lovely – Women Film Pioneers Project (https://wfpp.cdrs.columbia.edu/pioneer/ccp-louise-lovely/)
Louise Lovely – IMDb (http://www.imdb.com/name/nm0522593/)
The remarkable life and times, house and garden of Hollywood silent screen star, Louise Lovely. (http://www.abc.net.au/radio/hobart/programs/statewideweekends/lovely-final/8867522)
Jewelled Nights: ‘Can Good Movies Be Made in Australia?’ (http://sensesofcinema.com/2012/tasmania-and-the-cinema/jewelled-nights-can-good-movies-be-made-in-australia-1/)
Louise Lovely – Australian Silent Film Festival (http://www.ozsilentfilmfestival.com.au/fame/indexfda0.html?IntCatId=35&IntContId=58)

Tuesday, 3 April 2018

Transvaginal mesh implant scandal



To understand what transvaginal mesh is, and why there’s a ‘scandal’ I have to explain what pelvic organ prolapse is, and how common it is for women. Pelvic organ prolapse (POP) occurs when a pelvic organ (bladder or rectum or uterus) shifts out of place. See this Guardian article for some helpfully explanatory diagrams: https://www.theguardian.com/society/2017/aug/31/vaginal-pelvic-mesh-explainer

Pregnancy and childbirth is the leading cause for POP. Hormonal changes and the physical weight of carrying a baby can weaken the pelvic floor, and vaginal delivery can tear pelvic structures. In fact, POP affects up to half of mothers, but it can also be associated with heavy lifting, menopause or it can just be genetic. So POP is a common health issue for women, and as usual with women-centric health problems, a very quiet epidemic is happening. 

Some women show no symptoms, and for some women the prolapse is debilitating. They can experience symptoms such as difficulty with bowel movements, urinary problems, backaches, pain during sex – among others. So women want medical help with this issue, and not all need surgery to fix POP – but some do.

And so we come to transvaginal mesh implants.

From 2003 up until Nov 2017, transvaginal mesh implants (also known as pelvic mesh, vaginal mesh) were an option used to treat severe POP alongside options that were more traditional (like suturing).

The mesh comes in various types, (tapes, slings etc) and the idea behind it is to support weakened organs. It’s permanently implanted to reinforce, and your body grows its tissue back around and through the mesh.

By 2010 transvaginal meshes were used in nearly 25% of prolapse interventions in some countries.

But there were always complications with the mesh. Look at this list of issues from The Australian Pelvic Mesh Support Group in their petition to be heard by the Minister for Women back in 2015.

Chronic vaginal pain. Pain during sex. Nerve damage. Fistulas. Perforation of other organs. These are not manageable side effects.


I will also highlight that the situation was so dire they actually had to have a support group, and the support group had to run a petition to the Minister for Women instead of a medical group.


Healthissuescentre.org.au set up a survey to better understand the complication rate of the transvaginal mesh implants. 2410 women completed the survey, and of those 58% stated they experienced pain during intercourse, 26% had a relationship break down, and 41% stated they felt they weren’t fully informed about the procedure.

From the site Health Issues Centre:

“What’s worse is that when women approached a health professional about their concerns after surgery, a staggering 38% were told that nothing could be done”

I think this statistic really highlights the root of this problem. The transvaginal mesh implants had problems, and for something that affects so many women, the complaining women were just told nothing can be done. And they kept putting mesh into more women to treat POP.
One survivor of the implants, Gai Thompson, told ABC:

“For so many years we’ve been told there’s nothing wrong with us, that symptoms are either in our head or it’s not because of the mesh” [Link]


Why are women’s complaints and pain not taken seriously? If the complications were so high, why were we still using this flawed product and why is there no research into alternative methods for POP in the first place, a problem that is so common? We have the traditional methods, but these have a high rate of prolapse recurring.

Why does women’s pain continue to be minimised by our healthcare professionals?
Up to 14% percent of the implants rubs or becomes exposed in the vagina. (https://medicine.uq.edu.au/article/2017/06/explaining-vaginal-mesh-controversy)
Women can experience bleeding, discomfort and painful intercourse. And some women, when complaining to their doctors about pain during sex after the implants, were told to try anal sex.

If this can’t be used as a glaring example of how women’s pain and needs are minimised by our health professionals I don’t know what is. There’s nothing wrong with anal sex, but to have vaginal sex off the table because an implant is faulty seems staggeringly cruel to me. I can’t imagine a situation where a male had an implant that caused pain during heterosexual intercourse that doctors would tell him to essentially give up and try anal sex!

And once women start having issues with the implant, they face another scary complication: the mesh is designed to grow in. So it’s hard to get out. And according to The Australian Pelvic Mesh Support Group the doctors here weren’t trained for full removal of the mesh. This left women flying on their own money to America to try to get the mesh removed.

They’re not overreacting either, in the UK, the NHS (National Health Service) data suggests that 1 in 15 women need to get the mesh removed!

The mesh implants for POP were banned in November 2017, after a 700-person class action suit that is ongoing and the start of a Senate inquiry (spearheaded by Senator Derryn Hinch).
Dishearteningly, the senate inquiry heard some women say doctors didn’t even tell them they were having mesh implanted.

“Many women told the inquiry that “doctors didn’t tell them they were having mesh implanted,” Senator Hinch said.”

Unacceptable.

This whole thing shines a bright light onto how women continue to be treated when it comes to the medical industry.

To summarise: the devices weren’t tested properly, they were implanted - sometimes without full awareness and therefore consent, when they became a problem women’s pain was ignored, and when women needed to get the things removed there weren’t trained doctors to do it for them.

As Senator Derryn Hinch said “I believe it was one of the biggest medical scandals Australian women have ever been subjected to”.

I have to agree.



By: Tee Linden

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