JUST Capstone- Themes: Women Working in the Sex Industry in 2019

 


research focus.

For the focus of our research capstone, Brittany Sgaliardich and I looks to better understand women working in the sex industry and how the particularities in the nature of their work affects mental slack and decision making outside their work.

While sex work and the world surrounding can be difficult to swallow at times, there are a number of reasons why this area of focus is important and relevant to focus on in 2019, especially as two young women entering careers as designers. When given the freedom to explore a topic of our choice for our research capstone, Brittany and I knew where we hoped we could help tackle some truly wicked problems that we found to be worth solving.

context.

In 2018, two bills were signed into law that shook up the sex industry on and offline. FOSTA (Fight Online Sex Trafficking Act) and SESTA (Stop Enabling Sex Traffickers Act) were inacted in an attempt to protect victims of sex trafficking by targeting well-known websites like Backpage which functioned as marketplaces for sex-related services.

FOSTA/SESTA gouges at Section 230 of the 1996 Communications Decency Act, a bedrock of American online freedoms. It states that,

“No provider or user of an interactive computer service shall be treated as the publisher or speaker of any information provided by another information content provider.”

Under FOSTA/SESTA, this is no longer true in the case where third parties are found posting ads for prostitution –including consensual sex work– on their platforms. While the intention was that it would make policing online sex rings easier, in reality it has simply shut down these online marketplaces that provided a lot of safety and transparency for countless consensual sex workers. The effect rippled out across the internet, and many sites that had nothing to do with sex trafficking or sex work in general shut down because of the difficulty that censoring their users would entail. Now consensual sex workers are forced to start over and potentially enter back into riskier situations where they have less autonomy over their business operations, and safety in many aspects, including the client vetting process. FOSTA/SESTA raises issues for thousands of women online, but also for the larger issues of online free speech.

While these women have always deserved autonomy and safety, now more than ever is there a pressing need to help create security and legitimacy for women working online, but also those subjected to taboo and ridicule in our society and culture.

JUST.

For the ac4d class of 2020 Capstone Research, our cohort is partnered with local non-profit JUST, who’s current mission it is to invest in female Spanish-speaking entrepreneurs in the Austin area coming from a low-income bracket. They seek to empower these women who are generally marginalized and excluded from other types of resources or support, and to provide a community and investment to help them accomplish their goals on their own watch.

JUST seeks to find new opportunity spaces in which to grow their mission with the ac4d class of 2020’s help. Brittany and I understand that our work with women in the sex industry falls in alignment with some of JUST’s current mission, in working with women who are marginalized and often excluded from financial services and instututions.

methodology.

Our research methodology consists of first collecting real stories from real people. We have spoken so far with 12 participants in form of long form interviews where we discuss their life and work. We sourced these participants through personal networks, through visits to local strip clubs in Austin, but also through local ads on websites like Craigslist and Reddit, which helped us to collect a range of circumstances and experiences.

Due to the sensitive nature of our work, and potential risks for participants, we guarantee absolute anonymity for all the women we spoke with. Their real names and faces will not be disclosed in any of our published material.

Using their stories as our hard data, we are currently working to synthesize their experience into insights which will later become our design criteria for JUST.

As a part of this process we hope to have one to two participants come into the studio and work with us, hands-on, as we go through the material in order to continue to help us with their voice and experience.

emergent broad themes

Already we some broad themes have emerged across all of the experiences we have collected.

Power, Intimacy, and Identity are complex each in their own right, and the intersection of these three forces, especially in the presence of cash, is something that we will continue to explore as we work towards insights. Each of the following themes touches on one of these spheres.


 

stories

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THEME: Feelings surrounding the exchange of money influence how it is used.

Kaylee is a 22 year old woman from California. She has stripped there since she was 18, and is now working in Houston and Austin. Kaylee is all about creating community in her life with her support system of women outside the club, but she was lucky enough to find a community at the club that she worked at for many years in L.A. She says that they need to support each other because “no one cares about strippers”. She still experiences a lot of instability, often times living in her car, which is her prized possession, the way that she helps her friends when they need it,  and what she puts most of her planned money into.

Kaylee has a special way of relating to the cash that she makes as a stripper.

“When you appreciate your friends and you have a moment of gratitude, you hug them, right? It’s like there’s cotton candy everywhere and it’s just like, ‘Ugh, I love you, here have some’. We have this sort of notion of, I don’t know. That’s just a few dollars. That’s just money. Money means glitter. Money means a good night. Money means smiles. Smiles come and go. I’ll go back and I’ll make more. I feel like I don’t take it as seriously because of the way that it decorates this nighttime world.

The volatility and the playfulness of the money can create an ebb and flow that creates tension in her life.

“Because it’s also embarrassing to be the stripper, to be making good money – And I go to work and sometimes I come home and celebrate with my roommates if they’re still awake and throw my money around and they all laugh because I had such a good night. And then it’s like, ‘Oh shit, guys, I’m actually dicks poor and I don’t even know how to explain that to you because you saw me with all this money two weeks ago. You think that I can make all this money all the time.

Money comes and goes for Kaylee, but at the end of the day, as long as she can help someone in the way that she knows she can, its going to be okay.

“…My car doubles as my home. And like a security blanket, it’s everything to me. It’s how I get around. That’s how I help my friends. It’s how I picked that one up who doesn’t drive. It’s how I take care of myself and everyone around me and so that thing, having money in that thing’s wallet, is much more important than how this is running.”

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THEME: My sense of self-worth is renegotiated each time I go to work.
Zooey is a woman in her 30’s currently working as a pole dancing instructor and burlesque dancer in Austin. She lives in a cute apartment with her siberian husky and her roommates. She works a vanilla 9-5 at a desk, and instructs on the side. Before instructing she was a stripper. She speaks to the complexities of boundary setting and emotional cost of going to work. She speaks about the front she puts up as she re-negotiates her boundaries with every interaction she has with a potential client.

When Zooey started, she endured a tough learning curve.

“I was really naive. I guess I was probably really naive and too much of a pushover like didn’t have a thick enough skin yet to deal with the clientele. Because clientele, try to push your limits and push you as far as they possibly can, like how much can I get for this amount of money.”

There is a learned balance between objectification and control.

“But I think both, both people think that they’re in control. But they’re really just using each other. It was sickening but I was naive and young at the time I didn’t know any better. But yeah, that’s when it really became obvious to me that I was being objectified that I wasn’t necessarily in control.

Zooey experiences that the friction that happens when you need to put up a concrete mask in order to perform that tasks at hand.

“It’s really easy to relate to people or interact with the world when you’re hiding behind the persona that you’ve built up in your mind. It’s a way to avoid intimacy. I feel like the lines get kind of blurred after a while and you’re not really sure who you are. Because you’re trying to protect yourself from yourself.

 

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THEME: The perception of power is just as important as power itself.

Leila is a 42 years old woman with gorgeous flowing hair and a wide smile. She is a former escort, former porn-actress and current cam-girl. She has two children, one who is 18 now off on his own and one who is a 6 year old little girl with autism. She grew up in California, but also lived in Texas on and off because her dad lived there. When she was in high school she had a bad falling out with her mother and ended up moving in with her father, who was “not a very good dad”. She set out on her own, and by the time she was 17 and a half she was engaging in acts of prostitution.

Leila spoke about how money has given her the power to protect herself and her children when they needed it.

“Because if you can’t just go out and do something to protect yourself… If someone is harassing you and you have the power to put yourself in a motel for the night to be safe, that’s power.

She spoke about the power in creating a guise of glamor and power. Here she discusses how her clients saw her in the visual world she created around her work, versus her reality.

“I had a lot of power at that time because of the perception is reality. I lived in a mansion, my roommate was a goddess. They didn’t know it was in a court case fighting to get my kid back and that I had no money except for the money they were giving me…”

She understands how important it is to know you own power while doing this work.

“Let them think that. If you have any power cards, play them, because they surely do have power. They do. They can hurt you. They have the money that you need and a lot of guys are shady.”

next steps.

Our next presentation with JUST will be around the insights we develop out of these and other themes. What resonates with us, and what resonates with our client, will ultimately determine how those insights shape our design recommendations.

We will continue to share our progress and process with you and if you are interested in discussing our work further, we are available for conversation any time: design4women@ac4d.com

JUST Capstone Research Update: Part 3 – Understanding Non-Traditional Familial Decisions

This is part three in our ongoing Capstone project with JUST whose mission is to invest in low-income, female entrepreneurs to create more resilient communities in America and therefore to create a more just world where people have the chance to live with less stress and more joy. Ana and I shifted our focus to better understand the continued challenges women face today

Our Focus
We are looking to focus on non-traditional families and how they decide, navigate, and communicate financial decisions and division of labor within their home. Children limit a parent’s ability to work, there is a constraint on the actual amount of money a parent is able to bring in due to having less time.

Our Objectives
Our main interest was to learn and understand how non-traditional families go about making financial decisions and how they divide the household labors. We have found that the costs of housing, health care and education are consuming ever larger shares of household budgets, and have risen faster than incomes. Today’s middle-class families are working longer, managing new kinds of stress and shouldering greater financial risks than previous generations did. They’re also making different kinds of tradeoffs, like some that we found in our research like having part time jobs or no jobs at all because of the cost of Childcare, they prefer staying at home and taking care of their kids, but that has financial consequences, and other types of tradeoffs that we are going to find in the themes we mention in this blog post.

The objectives of this research are:
To understand how value is perceived in non-traditional families.
To identify and understand the emotional and monetary journey of parents.
To explore how a non-traditional family decides, navigates and communicates their monthly expenditures.
To explore how non-traditional families divide labor in regards to household tasks.
To understand how a non-traditional family’s access to their network benefits their livelihood.
To empathize in the decision-making process of a non-traditional family.

We spoke to ten participants in order to start doing the themes phase, which are patterns that emerged through the contextual interviews we conducted. We have stories that support the themes we have found.

Theme 1: There is an unarticulated gap between low and middle class

Many of our participants told us how much they struggle to get government aid because of the amount of money they make or having aid taken away because of a small income raise. They are expressing their concerns when it comes to food, health, education and other types of aid. We found that this is the case for many participants.

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Mary: She lives with her boyfriend Nate and they have a 2-year-old boy Eric. She has been living in Austin for ten years, after moving from southern Alabama, where she was born. She is the main bread-winner of the family, working for Government and Nate works part time at a bar, during the day he is a stay at home dad and takes care of little Eric. Childcare is very expensive and it makes more sense for him to stay home than to have him in a daycare. Mary expressed how saavy she is in looking for deals and other ways to save money. However, she and her family is having a lot of trouble because of where she falls in the “income bracket”.

“When I first got this job, Eric was six months old. And I did look into a lot of daycare options, and we make too much money to qualify for government assistance.”

Samantha: She is a single mom with two daughters, one is 17 years old and the other 7 years old. She lives in Austin, but had lived her entire teenage life in the Czech Republic where she got married to a marine, moved to the United States and had her first daughter. After a series of difficulties in her life she now has a full-time job that gives her the flexibility to work and also take care of her two daughters, which she is very grateful. However Samantha has experienced this government assistance issue many times. She told us a story of how she was granted a raise which rescinded her access to SNAP benefits. The minute raise did not add up, and she was left shortchanged in being able to provide adequately for her children., “That raise put me $50 a year over the poverty level. So, they canceled the $120 I was getting for food stamps.” She currently volunteers and works at her daughters’ school to offset the cost they have for attending.

Theme 2: I feel I’m stuck in the cycle of living in ‘survival mode’

Many of our participants expressed living in this constant cycle of ‘survival mode’. The money they make each paycheck disappears in the first few days because of the expensive debt, rent, insurance, childcare and other things they have to take care of. They feel stuck in this cycle of never having enough money, regardless of how many jobs they have.

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Sara: She is a new single mother with three kids that she has 50% custody of. The oldest is 12 years old, then the middle is 10 and her youngest is 7 years old. She just got separated but expressed that her ex-husband and her had good terms and worked together for their children’s sake. She currently has three sources of income, one part-time job at an independent bookstore in Austin, as a local children’s musician and monthly support from her ex-husband.
“Between that [singing] and book people in my monthly support from my ex husband, I’m able to survive. I’m not able to take a bunch of vacations or buy myself a new car or anything like that but I’m able to not be worried too much about paying my rent.”

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Ivan: Ivan is the male part of a marriage in which his wife is the primary earner, together they have a 3 year old named Brian. Ivan had been in the music industry in Austin and had a fair bit of responsibility at a popular establishment in town. The establishment unexpectedly closed shop and Ivan was left without a job. He is now working two jobs and seeks stability amongst him not being able to make ends meet. He juggles these two jobs and still struggles to make ends meet while not being able to be around his family.

We’re excited to continue our research and learn more about this unseen societal gap. As we continue we’ll update our themes and start formulating insights. Keep your eyes peeled for progress updates as we continue.

An Ethical Framework – For the Deconstructionist in You.

Q2 has quickly put into relief that make faster can be at the expense of think deeply. Or it can certainly feel that way. It’s pushing me to make and think and make and think faster than I feel capable of. In the last two weeks, our conversation and readings in Design Ethics have revolved around Privacy & Identity. My ability to learn new concepts (decentralized identity?) has been challenged by a more central question I have around how identity is defined in digital environments.

I wanted to present in class tonight about Amber Heard’s thoughtful NYT opinion piece in the attempt of answering the question, why does privacy matter? We’ve asked, a number of times, whether it really matters that a company knows where I am or what I like to buy. A position that, I believe, is fundamentally born from privilege. If we remove ourselves from the equation to consider this more objectively, we can see who else might be more at risk here.

The threat of revenge porn, or nonconsensual image sharing, is an enormous advantage for a person engaged in domestic abuse. According to a 2016 study from the Data & Society Research Institute, this threat is far greater among younger women and the LGB community.

And then I got stumped. I don’t know if this is a trustworthy white paper. I don’t actually know how to interpret quant data – it’s a language I can’t get into. Do I look at this through the lens of power and privilege? Am I already doing that? Do I look at this through the lens of impact over time and scale? Risk and consequence? Also, I still don’t really know what blockchain is or cryptography or RFID. I want to know more about the internet of things and predictive analytics. All topics we’ve brushed against that will be important to understand as I head into the future, never mind this field.

Ethical lenses to consider

In the absence of a baseline level of knowledge, I’m skimming the surface of the Fourth Revolution I didn’t even know I was in. What feels accessible to me – what feels like something I can unpack – are words like identity and privacy and trust. I need to zoom in before I can zoom out. I need to be in language I can hold.

Which led me to this: a strong opinion, loosely held.

The Deconstructionist

It felt important to articulate a way forward, to cutback through the swamp of new information to first, locate self. In the quick clip that is Q2, I felt like I was losing grasp of this. The framework, as presented, is informed by the personal drivers exercise we did at the outset of this course – borrowed from Pivot by Jenny Blake. The principles that inform this framework are borrowed from The People’s Institute for Survival & Beyond as well as dRworks free resource in understanding and dismantling characteristics of white supremacy culture.

All that being said, loosely held is the operative term here. I would love to be challenged to consider what else might be true and welcome any feedback you might have.

allison.kissell@ac4d.com

Ethical Implications on Data Rights in the Future

Having just moved to Austin it felt like a right of passage to check out Austin City Limits. I’m not one for big crowds, but I did it regardless. I purchased my ticket via their online platform and waited for it to arrive in the mail. Upon receipt I got a rather colorful wristband, with a chip inside. Alongside it were instructions to plug my credit card information in for easy checkout at the festival, less lines, more time… Our recent discussions in AC4D’s newest ethics class really got me thinking.

For my presentation this week I wanted to imagine the AC4D class of 2020 at South by Southwest 2030. A future Austin, full of even more bike lanes and driverless cars, scooters are more commonplace and hopefully safer than ever. I imagine our class is in full swing of the massive event. Ride-sharing, purchasing, and swiping our way through the event. This new cashless experience at south by is nothing out of the ordinary in future Austin. My classmates and I have our financial information, government identification, and personal information baked into our personal devices. These devices grant us access to and from venues, enable us to purchase things, and allow us to verify our identity at event check-in’s. It’s simple, it’s seamless, it’s easy.

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South by Southwest comes to an end, and we’re back to normalcy. People return to work, fly home, and continue school.

Just a week later the SXSW servers have been hacked and we get the email. Your data has been compromised. Our banking, government and personal information has been hacked and is out and amongst the dark forces of the internet to use it at will. What do you do?

I posed the class with the chance to save only one of the three options posed above, and to share a bit about why. No matter what option people choose there are a myriad of things that could prove problematic later down the line with their other pieces of information out in the ether.

General Data Protection Rights are present in Europe and enable a person to know where and why their data is being used or stored. Did anyone signing up for ACL wristbands understand where and why their data is being stored?

Sex and the Internet

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Last April, two massive events shook up the business of sex on the internet.

Firstly, the FBI shutdown a website called Backpage which is a prolific website for posting online personals that had become a mainstay for sex-workers to secure clientelle. Days after that, President Trump signed two new bills into law, the Stop Enabling Online Sex Trafficking Act (SESTA) and Fight Online Sex Trafficking Act (FOSTA). Together these two bills essentially make websites that knowingly allow sex trafficking to happen liable for hosting the illegal activity, meant to make it easier to go after proprietors of Backpage and similar sites. Both of these moves were meant to help the vulnerable people impacted by this internet economy: minors being trafficked by pimps who sought out customers online.

For my Studio Capstone project, I am interviewing women currently (and sometimes formerly) working in the sex industry in order to better understand their vulnerabilities, how their work impacts other areas of their lives and decision making, with the ultimate goal of applying design thinking to problem in their universal experiences. In doing this work, I am consistently thinking about issues of ethics surrounding this topic and my place in it. For the purposes of this assignment for my Ethics course, I wanted to dive into the ethics behind FOSTA/SESTA and the breach of Section 230 of the Communications Decency Act and the implications on our future as a society and government.

Section 230 of the Communications Decency Act says: “No provider or user of an interactive computer service shall be treated as the publisher or speaker of any information provided by another information content provider.”

This means that no online platform is liable to the information that is posted on the platform. Under FOSTA/SESTA, this liability is being chipped away. Sudden sites ARE liable if the activity is potentially related to sex trafficking. It is the site owners responsibility to make sure that their users aren’t allowing content that may be related to sex trafficking to exist on their platform.

Regardless of the fact that these laws are not working as they are intended to, and that they are, in fact, creating a more unsafe environment to consensual sex-workers and non-consensual sex workers alike, they also are creating a ripple effect into other places on the internet. Other sites are preemptively removing personal section of their pages in order to avoid liability charges.

PROCESS

In thinking about this in the context of our ethics work at ac4d, I can’t separate the work that I am doing in Studio from the ethical questions that we discuss in Ethics. There are implications to every decision that we make as designers, especially when working with vulnerable populations with whom we do not necessarily share similar life experience. I want to continue to be aware of, not only the decisions that I make on a daily basis while working with women in the sex industry, but also on the larger picture as it applies to all American citizens. While this law may not immediately affect my daily life, as I am not personally using webpages that have become part of this shut-down, the unintended consequences ripple out past just that issue. And if our governments are going to pass bills that limit freedoms surrounding this particular issue, who’s to say that they won’t slowly infringe on issues that are closer to home, or who’s ripples are closer to home?

RISK

As as phenomenon, if bills like this continue to be passed, we are at risk of losing on our online freedom of speech one chip at a time, and ultimately giving in to being heavily surveilled by law.

We are currently being surveilled by both corporations and government, and both spheres hold different consequential data on us, whether we wittingly consent to it or not. While there are reasons that this surveillance exists that is meant to help us, there are also severe risks to both types of surveillance. At this moment in time in a post 9/11, post Cambridge Analytica world, these two sphere become more and more inextricable.

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If it becomes common practice to be surveilled in the name of the law, and in combination with the power that comes with the amount of data that corporations hold on the nuance of our behaviors, we could end up in a hyper-dystopian society which takes advantage of our freedoms of speech, expression, and privacy.

Imagine, for example, if we began moving towards regulating our internet use around state level legislature. Imagine this in combination with the level of surveillance that we already allow by both corporations and government.

Example:

Casey is a woman living in Alabama, where abortion is essentially illegal. If the government can see not only her hard personal information like her social security number, address history, voting history, and then could also see her soft data collected by corporations like Facebook which could show her liberal political tendencies, the fact that she volunteers for the ACLU in Alabama, messages she sent her friends about an unwanted pregnancy, the fact that she recently bought a pregnancy test, and that she was Googling abortion clinics in Alabama etc. They could decide put her on a black list for individuals likely to have an abortion in their state.

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QUESTION

(In observing these and other current events) how should we, as a society and a government, approach the internet of free speech?

CONCLUSION

We ride a slippery slope when we consider dovetailing internet free speech and regulation. If we also consider how our data can be used against us in the face of new legislation, we could be faced with an online “big brother” similar to China or Russia, who are currently pioneering the way of internet censorship. We should tread lightly, and take seriously the future of our privacy in the face of government regulation.

Digital Identities: What Could Go Wrong?

A topic that is new to me that we have been discussing in ethics is called “digital identity”. This is the concept that we will each have our identity in one place in the digital realm which we can use to authenticate and standardize many common steps we take online everyday. Things such as unique passwords to each website and financial institutions will be held securely in your own private identity through the blockchain. While I’m familiar with blockchain, I am no expert, so this video may help explain in better detail than I currently can.

The intention behind digital identity is great. It would put the user in control of their information, in a decentralized system that would eliminate a central power figure. It would provide identification for billions of people who currently do not have access in arenas where formal identification is required such an banking, and offer inclusion into many other facets of society.

However, I question how this will ultimately benefit those not already in the privileged position of having access to the internet. There are currently 7.6 billion people in the world, but only 48% have internet access. More than half the world would not be in a position to capitalize on this new technology.

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On top of the large amount of people already excluded from access, a study showed that 14% of Americans are digitally “unprepared” – meaning they would likely not be able or willing to use this technology to it’s intended purpose. The conservative 14% number (likely higher in less developed countries) used across the remaining 48% leaves us with 41% of the world who stand to benefit from digital identity.

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To move forward with this technology, in my opinion, will create a greater divide in the already unbalanced equity of our planet. As an ideological solution it sounds great, but in reality the main selling point is “How many different places did you need to update your address information?” There are many unknown consequences of implementing a system that favors the few, and to be excluded at this point would make a large divide even larger.

But for the sake of entertaining the idea however, I decided to think about what a digital identity could mean to our research participants.  If you have not read about our project, here is our latest blog post for some back story.

As we conduct research on “makers”, we have noticed a trend that they like to live along the edge of the system. Often avoiding financial institutions, getting unconventional loans from friends and family, and finding ways to use their 1099-contractor status to their advantage. So I wondered, what would happen if they had a digital identity? Would it help or hurt their already unique lifestyle? Would they actually have the agency to limit what information they shared so as to not be targeted or banned from housing?

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As I thought about my classmates who are researching the gig economy workers, I wondered would a digital identity impact their life if one mistake were to happen? What are the consequences if we don’t keep power in the hands of the user and companies like Uber and Lyft use the digital identity in their favor?

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And another group is focusing on understanding how sex workers are making ends meet in our society. An already marginalized group who depend on anonymity, would they no longer be able to protect themselves? Would the digital identity be secure enough to prevent stalkers and hackers?

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Another group is working with non-traditional families, that of single income households and how they are planning for the future. How does digital identity affect them, and their children? In a world of hackers and predators, at what point do we feel comfortable giving control of identity to our children?

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And lastly, our research partners through the project, JUST. What are the ramifications of a digital identity to a population who may not have proper immigration status, or who may be refugees fleeing from violence? Will this actually make them more included, or will these details coming to light actually push them further from mainstream society?

In my opinion, I think digital identity will be available in the near future, but I think it will have unseen consequences, which make me currently unable to support it.

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Is your desire for privacy actually hurting others?

It’s arguably harder than ever to keep information private in this modern age. Photos are taken digitally, shared, and then impossible to recover. Search history is gathered, triangulated, and then used by major businesses to predict and influence future behavior–often without any expressed consent.

Recently, Google’s Project Nightingale has come to the forefront of the conversation around healthcare data and privacy because one of the most powerful companies in the world has gained access to one of the largest known data sets of personal health information through a partnership with America’s second largest healthcare provider.

Google says its mission as a company is “to organize the world’s information”, and by gaining access to this health data they are going to be able to do a lot of good in the world. But many are very skeptical about. Shockingly, it was never communicated to the patients or their doctors that this data had been shared. But perhaps even more shocking is the fact that this data (on over 50 million Americans) is non-anonymized.

Google already knows quite a bit about the individuals that use their search engines and other tools. The risks of them having this much additional non-anonymized data seems extremely risky. What if they take this data and use it to discriminate against people for things like medical coverage or life insurance? What if an employer could pay Google a fee to see all of one’s health information as a way of augmenting a future employee’s standard background check? There are seemingly countless examples of why this work might be risky for individuals.

But, I also want to explore what the positive side of this work might be. Let’s walk through a typical person’s medical journey when they receive a diagnosis. Often, someone shows symptoms. They go to a doctor to explain these symptoms and if they are lucky that first doctor has an idea of what is going on and gives them a diagnosis.  The doctor may listen to the patient talk about their symptoms, take a look at a few things on their physical body, take the patient;s temperature, run a test or two and then give a diagnosis. Maybe this patient has the flu. That seems pretty straight forward.

But what about when it’s more complicated than that. What if this doctor considers all of the patients symptoms and test results and recommends that the patient go see a specialist.

Often, going to a specialist requires the patient to get a copy of their medical records from the current doctor (maybe from just this appointment but quite possibly from all historical appointments), which includes copies of test results that could digital or hard copy, copies of appointment summaries that could be digital or hard copy, and then bring those records to the new doctor often BEFORE the appointment so that the specialist has time to review those documents. These documents are often sent by snail mail, by fax, by email, by online portal, or sometime, and in my personal experience, have to be hand delivered from one doctors office to another because their digital systems don’t work, the fax machines aren’t working that day (do fax machines ever actually work?), and snail mail will be too slow.

Now think about that being further exacerbated by someone who receives a critical diagnosis. Maybe they have cancer, or a need for surgery. That’s often a team of doctors that need the patient’s medical history. Imagine deciding you want a second opinion. It can become completely overwhelming for even the most organized patient, and often information gets lost in all of these transactions. Tests are retaken over and over again, and the patterns that could have been noticed over time are not noticed because the files often end up as a stack of large papers.

To further illustrate how complicated this process can be, I sketched out a scenario that I personally experienced a few years ago-from initial doctor visit about symptoms to the eventual need  for surgery. There was an enormous amount of paper work that needed to be moved but also an unbelievable amount of time I had to spend just shuffling physical or digital papers from one place to another.

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For an individual that doesn’t have the capacity to go through all of this effort (many of these scenarios are kicked off due to an illness of some kind, after all), they are stuck not receiving the care they need, or receiving it on a MUCH slower timeline than they need it. What about people who work hourly jobs, and don’t have the luxury of taking a 2 hour lunch to run some of these documents from place to place?

When I think back to all of the time I spent shuffling information around and calling doctors and logging into new portals and then pause to consider that one day there might be an option for those doctors to simply log into a system that looks like a google search engine, type in my name, and then immediately have access to every test result or doctor visit I’ve ever had, I have to admit it reframes the obvious risks.

Beyond the risks of this data being used to exploit, I think it’s also important to ask the question – Is it unethical to NOT engage in large scale data collaborations like Project Nightingale if these project have the very real ability to significantly improve health and even save lives at an unprecedented scale and speed? I wonder how many people right now are sick and will continue to be only because all of their health history is scattered among multiple doctors and cities and systems. If that person could be cured by simply pulling all of that health history into the same place for one doctor (or machine) to process, then how do we weigh the risk?

Does a singular identity limit our potential for control?

Davos-Klosters’ (World Economic Forum) whitepaper on digital identity argues that today digital identity is fractious: 

“Which leads to daily frustrations with countless usernames, forgotten passwords, ID documents and time wasted waiting to be verified and authenticated to complete a task such as gaining access to a building, boarding a plane, getting a job, etc.” 

He also details the importance of a singular identity for humanitarian and legal reasons. In order to have a voice, “a verifiable and trusted identity is necessary to interact and transact with others.”

While I agree, I think we need to distinguish between identifying information like our birthdate, social security number, and nationality and more adaptable pieces of our identity like behaviors, values, interests, and emotions. 

In many papers we’ve read, both aspects of identity are used somewhat interchangeably. As computers spread into everyday objects and consumer tracking continues to get sneakier,  the potential for data misuse, manipulation, and power imbalances becomes greater. This is magnified if we are then also subject to one, singular identity that is connected to all of our interactions. Davos-Klosters recognizes this as a risk, and said we need “options for those not wanting to have a digital identity or those that want to share only parts of their identities (e.g. different personas in a different context) or only share relevant identity data for specific purposes must be considered.”

Distinguishing Identities

Moving forward in discussions about identity, I argue there should be a clearer distinction between fixed parts of identity (things that might go on an ID) and adaptable parts of our identity.

Identity Timeline 3

Until we have more control and transparency over our data, I don’t feel comfortable arguing for unified identities. I don’t trust that corporations won’t use a humanitarian angle to ID people as an opportunity to sneak in data tracking on more adaptable, personal parts of our identity.

Imagine a future where all aspects of your identity were observed, noted, and stored — forever. From the moment you’re born, every aspect of your physical presence, interests, relationship, use of language — everything — was captured and stored. 

As ubiquitous computing and the Internet of Things (IoT) popularizes, this future is possible. Right now, our digital behavior is meticulously monitored and stored in connection with our device ID, email address, or social media login. Our nondigital actions are not far behind. The distinction between our physical and digital presence is waining. 

Without control of our data, a fractured identity is one of the few protections we have.

Right now, it’s possible for me to sign into my YouTube account with one email and watch certain videos and switch to a different browser for others (something I do regularly when watching work-related content like tutorials vs. entertaining videos about food or cultures). I consciously keep those pieces of myself separate, because I want to stay in a different mindset. I want to target different sides of myself. 

If I were to have only one unified identity across all services, I would lose this control. All of my actions could be cataloged and attributed to me.

I remember when I was younger and adults would threaten me not to make bad decisions because “they would go on my permanent record.” I now know that no such permanent record exists. But in a world with a single identity that is made up of your digital and real-life actions, that permanent record could be a reality. And systems could start gathering and attributing data to you before you even have the capacity to consent.

Imagine a day where every interaction you have is personalized to who the system thinks you are. 

Your alarm wakes you up at just the right time with news articles that have been curated entirely for your interests, storefronts or vending machines could adapt to only show you things you’re interested in, your doctor could only give you recommendations based on previous behaviors from the system. Everything could be built around your singular identity of how the system views you. 

But what if you wanted to make a change? Imagine trying to combat a world that has been entirely personalized for who you’ve been. You would rarely have challenges or catalysts to inspire change. Even if you did, you’d have to combat a lifetime of data that informs your current state. It’s a self-fulfilling prophecy. If the algorithm thinks you are this way, maybe you’ll just always be that way. And who gets to write the algorithm? (That’s a whirlwind question for a later date.) 

This already happens on a certain level with media consumption and social media habits. We create an echo chamber that is nearly impossible to escape. The only way I can (somewhat) escape is by changing my email or signing up for a new account and retraining the system. But if we had a unified identity, we’d lose that control too.

Discrimination & Manipulation

Another concern of unifying our digital identities is the potential for misuse. While fixed pieces of our identity are subject to discrimination, adaptable pieces of our identity are subject to manipulation. 

Right now one of the only safeguards I have to combat constant tracking is through a purposefully fractured identity. 

Discriminate

 

And finally, even if we are given more agency, I am concerned that information avoidance will keep us from truly being in control of our digital identities. So while we continue on this thread of the importance of digital identities, let’s be careful to not lump in data that may only lead to misuse. 

A Conversation on Privacy

As a consumer in the United States, I exchange many things for my privacy all the time. Many of us do. We share our personal data to afford us new information and entertainment through face recognition apps and services like 23andMe. Our privacy is offered in exchange for convenience as we link new accounts to existing ones, accept cookies haphazardly, or store critical information in our browsers. Our privacy affords us small luxuries.

Luxury transforms into necessity for people at greater risk of abuse. Increased vulnerability leads to higher stakes if privacy is compromised. Imagine the privileged relationships in your life – a therapist, partner, friend. The intimate information we share with these people can leave us vulnerable, elevating consequences, if this information were exposed. In a time of ICE raids, undocumented immigrants in the United States live at risk of detainment and deportation if anonymity becomes compromised. Privacy can take on great costs in the forms of human dignity, freedom, and power. It is often our privacy that protects those things.

Rising stakes.

Stakes are rising while our data is collected, shared, and harvested. The longer our data’s shelf-life and more robust the database, the greater the unknown opportunities for data brokers and their customers. What may seem like an inconsequential risk for some, can become great in time.

Although relationships with privacy vary across privilege, influence, and access, as a society, we should incorporate diverse perspectives to reach a greater consensus on privacy’s importance – before other entities make assumptions on what it means for us.

Understanding potential for abuse.

To begin understanding the importance of privacy and its inherent stakes, I have started questioning the consequences of exchanging my privacy. When, and if, I knowingly consent to share my private data, how do I risk potential for abuse?

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figure 1. measuring potential for abuse

These questions start to examine what is at stake when privacy is exchanged. If these are the costs, I may not be willing to play – either as a user or a designer.

Consequences for society.

The spread of our personal data has consequences for ourselves, but also for others. Our data support the creation of more powerful databases, making it easier for brokers and corporations to develop assumptions about individuals which can be used for the prediction and influence of behavior as well as discrimination against people. As a result, we’re all in this collectively – the skin we shed in our digital lives, affect not only ourselves but all those around us.

common good 3

figure 2. societal implications of abuse

Making consequences tangible.

While asking these questions and identifying risks, the consequences can sometimes still feel intangible. This is in part because I have much to learn about my digital fingerprint, both as a user and budding designer. With little understanding of my data lifecycle and the manifestation of its consequences in my everyday life, I risk spheres of influence capitalizing on my ignorance. This is a feeling true to many.

Value of shared language.

As a designer, I suggest we bring these questions to the forefront of every discussion.

As a business, what is our relationship with private user data? What is the potential for abuse? How is that reduced? How is it communicated to users?

To enact change, we must seek alignment by developing shared language amongst users, businesses, those operating within them, and policymakers.

We create public health grades for restaurants, why don’t we create privacy health grades for businesses? Let’s examine business relationships to privacy, map data lifecycles, and evaluate each privacy-related business practice against its potential for abuse. 

Do I place my health, or the health of others, at risk when dining at your restaurant?

We must empower users to clearly identify risks and easily make informed choices. 

With the goal of distilling complex information, designers should work alongside users, technologists, businesses, and policymakers, to make digital privacy and its potential for abuse, comprehensible and actionable.

Together, we can make meaningful, productive conversation start now.

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For questions, comments, or to continue this conversation, please contact me.

brittany.sgaliardich@ac4d.com

How do we protect what is private?

This is a broad question that maybe some of you have thought about, to start understanding what this question even means we need to do some introduction. Firstly, let’s start by introducing what does the word privacy mean according to The Cambridge Dictionary:

Pri·va·cyç/ˈprīvəsē/

  • The state or condition of being free from being observed or disturbed by other people.
  • Someone’s right to keep their personal matters and relationships secret.
  • The right that someone has to keep their personal information secret or known only to small groups of people.

Secondly, I will try to answer this question by using a common service that we all have hear of, it’s called Facebook. Currently Facebook has had a rough couple of years because of the Cambridge Analytica scandal, and whether they are culpable or not. I will roughly introduce what Facebook is and does.

Facebook is a social networking site that makes it easy for you to connect and share with family and friends online. Originally designed for college students, Facebook was created in 2004 by Mark Zuckerberg while he was enrolled at Harvard University. By 2006, anyone over the age of 13 with a valid email address could join Facebook. Today, Facebook is the world’s largest social network, with more than 1 billion users worldwide.

When Facebook to go public in early 2012, Mark Zuckerberg noted that the social network wasn’t originally designed to be a company. “It was built to accomplish a social mission — to make the world more open and connected” Zuckerberg wrote in Facebook’s S-1 filing, presenting the business as an engine supporting this goal.

Now, five years later, the social network’s CEO still believes Facebook’s primary purpose is a social one, but he’s ready to update this mission for the first time. At at time when Facebook has come under scrutiny for not adequately curbing the spread of false news and extremist activity on the social network, Zuckerberg is committing to making the world closer. On stage on Thursday at Facebook’s first Community Summit, a gathering in Chicago of leaders from 120 different Facebook Groups, Zuckerberg unveiled Facebook’s updated purpose: “Give people the power to build community and bring the world closer together.”

us-it-lifestyle-internet-facebook-720x720

https://www.forbes.com/sites/kathleenchaykowski/2017/06/22/mark-zuckerberg-gives-facebook-a-new-mission/#7d468aed1343

Lastly, the bad publicity they have had it’s true, but what else might be true in this case. Facebook is a free social networking site that needs ads in order to survive and work the way that it does. Their whole mission as a company is built on ads, their primarily interest is to collect data, whether they sell it to third parties or not. That is one thing we are going to further talk about.

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In the company’s annual developer conference, they spoke to all the change that Facebook had with their new identity, new graphic image, new mission, new purpose and many other things. That day, Facebook went from “Show off everything in your life publicly…we encourage you!to “Users have control over sharing with one or more people… it will be encrypted”. That is saying that they will not be eye dropping on private conversations anymore, but that makes me wonder if that is completely true and if we can trust their word on that. In the conference there where many questions left untouched, like if there will be any changes on how they collect user data? Or how they are ensuring that the data will no longer be shared to others? Questions that are very important for us, the public.

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With all of this in mind I made an artifact that reflects what technology is doing to our public and private data. There is a line that divides our private data from our public. You can think about what things you would like to leave private and what things are good having public…

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But what happens when that line becomes blurry and unclear? Where does our data stand? As technology grows and advances, this line becomes even more blurry. How can we protect what is private when we don’t even know what our private data is? The content is becoming both public and private at the same time. No matter what Facebook’s CEO mission is, doesn’t matter if our information is now encrypted, the information we upload is public.

After talking about this mega social network, we can now start to ask ourselves, How do we protect what’s private? To do that we need to balance public and companies. By making the public to care about their privacy and not just scroll down the privacy and policy pop-up until we reach the I agree button with even noticing what I am agreeing upon. Companies also need to care about our privacy and not sell it like it was hot delicious bread. This way we could have a meaningful relationship between companies and the public.

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There are many things designers can do, here I enlist some examples that I have come up with, what else can we do?

  • Giving users more transparency, choice and control over how their data is being used
  • What data is being collected, by whom and why
  • Giving users easy access to information and control

Benefits are big
Risks, that we’ll have to see…