Being female, a patient, and co-designing #DIYPS means often being discounted

As great as #DIYPS is, the entire experience of innovating hasn’t been what I wish it was. @danamlewis on the #DIYPS experience as a nontraditional innovator who is both a patient and female(w/ @scottleibrand):

Scott and I have been co-designing and co-working on #DIYPS since November 2013. (Click here to learn more about #DIYPS if you are new to it.)

I don’t work in the tech industry for my day job. (#DIYPS is something I do in my spare time and in no way related to my day job, thoughts are all my own, etc.) The more that I engage with others in the “industry” through #DIYPS work, the more I’m reminded of why I’m glad I don’t do this full time as a career. Being unintentionally but automatically disrespected and discounted creates a hostile environment, and makes it difficult to remain engaged and motivated to do great work.

Here’s why we’re writing this post:

Many conversations (not all, but any is too many) and potential collaborations about the technical development of our project (#DIYPS) have required starting with a leveling of understanding of why I am participating in the conversation.

Sometimes it seems to stem from the misunderstanding that because I am “the patient” (the end user of the system we’re building) and not an engineer in my day job, I don’t/can’t have a very deep understanding of how this works on the back end.

Perhaps it is so “easy” to misunderstand because we don’t often enough see patients who take the opportunity to design and build the tools they need to manage the chronic diseases they live with every day?

Scott’s take: #DIYPS was built jointly by both of us. Dana provides all the data, of course, but she also had dreamed up a concept for a DIYPS-type system months if not years ago before we were able to get John’s uploader code and start making it happen. Once we started actively developing the system, Dana was involved in every single product decision, and made every major decision on how the system should work. I of course contributed a number of ideas about how it could work better, wrote much of the code, and did initial testing of everything I wrote. But Dana did the real-world beta testing, decided what would and wouldn’t work from a usability perspective, prioritized feature development (and even bug fixes), and directed the project in countless other ways. If we end up patenting #DIYPS, her name will be listed first.

And yet, the assumption always seems to be that Dana must not have a complete understanding of the system, and can’t possibly have full ownership of #DIYPS.

Perhaps the reason Dana has to battle at the beginning of any conversations to be taken seriously as an active participant is even simpler: she is female. Even when she mentions coding experience (C++ and FORTRAN 90), and/or I mention her role in creating #DIYPS, the discounting continues. Why is that? It usually takes fairly subtle forms (such as directing all questions about how the system works to me instead of to Dana). It is undoubtedly subconscious in almost all cases, but that makes it all the more insidious, because people don’t seem to correct their misconceptions as quickly when they’re not aware of them.

This experience is not ok.

Dana’s take: All of the above frustrates me greatly, to the point of writing this post because I’m not sure what to do about it beyond calling it out individually when I see it (Scott is also great about pointing it out and looping me back in). It’s a systematic issue*, and something I’ve heard is experienced by other patients or other women working in tech, which heightens my frustrations.

Having these experiences repeatedly burns me out from wanting to innovate further, and to go back to just keeping myself alive. Which is selfish. And I don’t want to just do that. But sometimes it feels like the only option.

Here is why this type of experience is damaging:

Disrespecting, discounting, and excluding someone wastes an excessive amount of time that could be spent talking about moving #DIYPS and projects like Nightscout forward and saving lives now, while #WeAreNotWaiting for the medical device industry and the FDA to catch up.

Discounting others automatically is a disservice to you, can be extremely frustrating to them, and it takes away from everyone’s time.  But most importantly, it saps their energy and motivation to make a difference in the world. And in an era where technology is enabling us to do so many amazing things, including actually saving lives with technologies we’re inventing in our spare time, wasting time and demotivating innovative individuals might mean not saving lives we otherwise could.

If you read this far, we would both encourage you to think about your own behavior when you meet with people, including what kinds of questions you’re asking them. (This is a related good read from a male perspective.) If you find yourself asking questions of someone, or making assumptions about their role or capabilities, think about whether you ask the same questions of others that you speak to. Don’t automatically discount or question someone, make assumptions, or treat them differently just because they’re young… or female… or a patient… or old… or don’t appear to be technical… or whatever your initial perceptions may be.

As many recent articles show, this is a problem across the high-tech industry, with many widespread examples, and some truly awful behavior. But those of us who are working with volunteers trying their best to make the world a better place need to hold ourselves to an even higher standard, and work to overcome even the implicit biases that lead us to ignore or discount valuable contributions from some of those who are most eager and able to help.

*If you have any other ideas about how to handle these situations in a way to point out to someone what they’re doing, and also more widely educate the world so we don’t waste as much time and energy on in these situations (or having to write or read more of these types of posts), we’d love to hear them.

Dana Lewis & Scott Leibrand

5 thoughts on “Being female, a patient, and co-designing #DIYPS means often being discounted

  1. I felt a sting here.

    As a person with diabetes, I of course first and foremost connect with Dana. I don’t mean to disrespect Scott, who obviously knows a hell of a lot about diabetes already. It’s just an emotional thing. I still tend to think another person with diabetes “gets me” on a level others can not.

    However, when I think another diabetes startup interested in extracting live data from Dexcom sensor might be interested in DIYPS, I put their engineer in touch with Scott.

    Clearly a place for some soul searching. These are some of my excuses.

    First, I think it has an effect on me that this blog has Scott’s name on it’s URL. I’m sure it would change by perception if this blog was published under Dana’s name. I know I should pay more attention to the small author tag of each post, but I somehow the URL is more visible for me.

    Second, as an engineer programming my own algorithms to manage blood glucose data I find it easier to relate to Scott on that front.

    Third, I find Scott favoring and retweeting my tweets more often. That also builds a kind of a connect.

    Last and lightest, there seems to be a concentration of people named Scott among the diabetes advocates I follow in the US. This somehow helps Scott to blend in to diabetes circles, and simultaneously stand out as one of the Scotts. :)

    Frankly, and more seriously, I feel absolutely terrible thinking I may have been a part of what makes Dana ‘burn out from wanting to innovate further’. I’m literally crying here. I so much love what you guys do and can’t bear the thought I might be hindering that progress.

    I hate to think it’s just a matter of gender. I’m pretty sure it’s not about age in this case. And I don’t think it’s about being a patient. For the sake of my own sanity, I remember all the female colleagues I’ve worked with, in what I believe has been full mutual respect. I need to tell myself it’s not about gender.

    As a person with diabetes, with requirements and design needs for tools to manage blood glucose, I relate with Dana. As an engineer implementing algorithms I relate with Scott.

    Regardless of the above excuses, please accept my most sincere apologies. I’ll do my best to pay more attention and fix my thinking and behavior. Please also do think of ways of helping me do that. Register a new URL for the blog. Increase the font size of the author tag. Change the order of your names in the blog title…

    [Disclaimer: the above comment has been written in an emotional state]

  2. Mikael, thank you for both reading the post and taking the time to reflect and leave a comment – I really appreciate you and so many others who are stopping to think about this, and may consider this for the future. You bring up several good points about the way you interact with us each based on differing connection experiences (and point noted about the URL – we changed the title name but not the URL other than adding as the redirect). I think it’s natural that you (and others) might interact with us and have individual relationships with us that are unique. The differentiating point to me would be if someone was/is treating one of us with differing levels of respect based on our perceived labels in the project. I’m now reflecting on these labels further – what is an engineer? I haven’t identified as such in the past…but maybe I should, as I’m engineering #DIYPS. I don’t think it’s as simple as proclaiming myself an engineer, but it would be interesting to compare these experiences after a period of identification as such to see if the outcomes differ.

  3. While I am a female student in a male-predominated field, I never really have experienced the same feelings of being discounted due to being female or a patient, which may seem shocking to you.

    For what it’s worth, I have a twin brother, and my brother’s friends are all my friends too, although my brother and I are not particularly close. For me, I really didn’t feel different. Strangely enough, I was like one of the guys.

    In an academic environment in my sort of circumstance, female students are well known and stick out. This can be both a good thing and a bad thing, and it’s a matter of how you handle the situation and present yourself. I don’t find much difference interacting with my male peers versus my female peers, although I enjoy some comradery from my female peers.

    While working at Geek Squad, as the only female associate, I definitely experienced sexual harassment. But, I always treated work like work and I didn’t let my coworkers’ misbehavior get to me. If it caused a hostile environment, I let my supervisor know right away that the individual was causing tension and it was interfering with my work, and it typically ended there.

    However, being an engineering student is an uphill battle for anyone, unless you are absolutely brilliant. I had to prove myself academically, and even then I was likely discriminated due to my health-related impairments (not diabetes-related), due to an ongoing situation that was bad. When I realized my former university had even some intentions (just talk behind the scenes that I found out about) of denying me a degree or preventing me from getting a job altogether, I transferred out.

    In the technological fields, whether it is fair or not, you will have to prove yourself and be stubborn. I haven’t experienced the same sort of situation that you experience, but speaking out, right when it happens, when somebody is unreasonable is the way to go. You have to advocate for yourself and your project(s) on the spot, even if some completely out-of-line things are said to you. You don’t have to necessarily be nice either, if it’s really bad. I had a physics professor tell me once that if I “couldn’t show up to his class that I should quit school” (because I told him to please not take points off of my grade due to being absent due to illness from a rare autoimmune disease–and he didn’t like it), and I flipped out at him. I don’t regret doing it either, because he was so unreasonable. Contacting university disability services was a lost cause as he was a 70+ year old white male, and he wasn’t going to change his ways.

    While he did take a few points off of my final semester average, he knew he was out of line and he toned it down. While he may have adversely affected my grade, I still didn’t let him walk all over me. He sure got nervous when I got mad at him and he probably thought twice about doing that to somebody else.

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