# Codimd linked to indico for WIT talk. # Questions for WIT talk : 1) Can you give us a glimpse into what it is like to live with a disability? ~3 min 2) When did you come to accept your disability and what work have you done since to aid yourself? ~2 min 3) You mention that you gain inspiration from the Open Source Philosophy to proliferate collaboration for innovating solutions for individuals with disabilities. Can you tell us your experience with the FOSS community and Women in Technology groups? ~3 min 4) Why do you think organizations and individuals should care about innovating for disability? ~3 min 5) What organisations are you currently part of who are working in this direction? ~2 min 6) What is your take on inclusion for disability? ~1 min 7) You spoke of the support you have received here at CERN, we would like to hear more about it. Can you tell us more? ~1 min ---------------------------------------------------------------------------------------------------------------------- Answers: 1) Can you give us a glimpse into what it is like to live with a disability? - 4 mins - I would like to first give a primer of my disability condition. I was born with this condition called Ectrodactly. Only 1 in every 90000 people have this condition in the world. - The place where I was brought up in has a lot of stigmatisation when it comes to people with disability - no matter if it's as minor as I have or something major. - I was raised with a mindset that I was no different than my peers which is a great mindset to boost anyone morally but very scientifically inaccurate. - Because of my condition I miss a thumb and a ring finger, also my index and middle fingers are joined. This is akin to functioning with 2 fingers which are 5 cm apart. We all know that the thumb is a crucial evolutionary advantage for us as primates of the highest order allowing us to have a firm grip and grasp of everyday objects. - So growing up it was very confusing and frustrating for me as simple tasks like holding a tray of tea cups was a challenge and also an accomplishment because I had not dropped it this time. A whole lot of time I hated being in the kitchen. Because I would end up spilling or breaking stuff. My mother had to replace all the kitchenware with aluminium or steel because being having glassware or chinaware was not very safe for me or people around me. - Usually we are either left handed or right handed, one of our hand is predominant when we do tasks, a lot of times I have to shift this predominance and I have to do it very quickly at times. For eg, if you are a right handed person when you cook, you might hold the pan handle with your right hand and stir the contents with your right hand. I do it the other way although I am a right handed person. - Also I had to be extra cautious with what career path I would purse, for eg, pursuing to become a surgeon was not very advisable, because holding and operating surgery equipment requires ultra precision and even if a simple micrometer is missed, a life would be lost. - Similarly career paths like studying chemistry where holding equipment slike burettes, pippetes and test tubes also required me to be extra cautious, not being cautious when pouring out chemicals from glass bottles would be hazardous, biology also for that matter presented similar issues when it came to lab work. - So I was limited to something which is theorotical, management or literary. Computers were easy for me to operate, my mother suggested I take up this path. - We recognise all the people without any disability with the term as "able-bodied". So if you see the pattern here all the tasks that the able bodied people do unconciously day to day, for me (and for every person like me insert %age) I have to do everything with ultra caution, this inturn adds up to my cognitive load. - This is a glimpse of life one person in 90000 who have my condition, if we extrapolate this number to include people with other disabilities, there are 1 billion people living with disabilities in this world, that is 12% of the entire population or 1 in every 8 people, and this is accounting for only physical disability and not factoring in people with mental disabilities. References: https://www.worldbank.org/en/topic/disability#1- - https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3307919/#:~:text=Ectrodactyly%20is%20an%20autosomal%20dominant,as%20likely%20to%20be%20affected. 2) When did you come to accept your disability and what work have you done since to aid yourself? - I came to accept my disability very quite recently, because like I said I was raised with a mindset that I am no different than others, but when it comes to the design of my left hand, people are different than me. - The realisation mainly hit hard after I started living alone and doing most of the chores by myself. - I realised that every day objects, let's take a simple example of a water bottle, it is built for a hand which has a design of four fingers and a thumb which can have a firm grip while using it, same goes for every other object you see around or use for yourself. - I started making small hacks here and there to make things easier for me, for example door knobs which are circular are simply impossible to operate on, so I fashioned it with a string which I could simply pull like this - simple linear motion to circular motion trick which made my life much easier and one less thing to consiously put effort on. - The problem is not that I have less fingers or the world is designed only for able bodied people, it would be really dumb if the design of the current existing world has to be changed completely to accomodate disabled people. What we need is to allow space for modifications to happen when and where required and the main thing is I wouldn't be able to do it alone all the time. - For eg, Another time was it was my gym instructor who realised I wouldn't be able to life dumbells which would deprive me strength training, he fashioned a hook kind of mechanism which I could strap to my wrist and allowed me to lift dumbells easily. - I realised life was becoming easier with these simple hacks, I didn't need a superhero's mindset to function, all I needed were these simple hacks born out of sheer necessity. - With this in mind I very hesitantly pitched the idea of "Crowdsourced designs for the disabled" at CERN webfest hackathon last year. I was overwhelmed by the response I received, people from all across the world wanted to join my team and work on the idea. Since we were in lockdown last time this happend and everything was remote, the idea was to build a platform where any person with disability would present the accessibilty issue they have and anyone from across the world could collaborate to brainstorm on the design, 3D model it, 3D print it and ship the required missing piece which would bridge the gap between the disabled person and everyday objects. - We protoyped this platform and people from across 4 countries with different timezomes worked on materialising the idea, we were awarded the winners of this webfest hackathon. - This was a huge validation for me that I need not be hesitant to talk about my condition, because if I did not accept it myself then I would never be able to help myself or in extension help anyone from the disabled community. - What I wanted was for the able bodied community to create and innovate along with me not for me. 3) You mention that you gain inspiration from the Open Source Philosophy to proliferate collaboration for innovating solutions for individuals with disabilities. Can you tell us your experience with the FOSS community? (Shorten the question) - I have been a volunteer at FOSS student clubs. I mostly helped to introduce students to FOSS philosophy and helped them migrate to FOSS software for their coursework. During these times, we operated on the model of if someone who needed help with the migration, for eg, if a student wanted to migrate from proprietary OS to Linux, they would simply propose that they needed help with it and based on the types of software the student used we would brainstorm collaboratively, which flavour of linux best suits this person's need and would help come up with a flavor for them. For eg, we had a lot of gamers who would want to migrate but simply didn't want to because they thought installing games on Linux was a hassle. We introduced them to the SteamOS and if they would still not be happy people would come forward to set up the "Wine" program which enables Linux users to run Windows-based applications on their machines, some people would come forward to even build a custom OS image at times based on the necessity proposed. - The people who proposed for help, after getting help, shared, tinkered and redistributed these images among others freely in other student FOSS clubs too. - This concept of open collaboration where students from different classes and clubs came together to build something tangible for each custom need has always stuck with me as an inspiration. - This was possible only because we had source code available at hand which we could study, reuse and modify. If the design specifications of products that need tinkering are openly available to us on hand, it becomes easier for us to modify and add adjustments to these products. Something as simple as having 3D models of these products available at hand could save us significant amount of time and effort 4) Why do you think organizations and individuals should care about innovating for disability? - We all know that caring about each other, either in a family or organisation has compounding benefits for both individuals and the organisation. - In my experience the disability community is constantly shifting, because new people are added to it everyday. Disability is not only when people are born with it but also anyone who might have had an accident, a surgery or illness that creates long lasting problems which makes normal day objects inaccesible. - I was recently reading an article which reported that COVID-19 likely resulted in adding 1.2 million more disabled people. - And then there are people in our organisations who are aging and the necessities they require need to be addressed too. Age doesn't always result in disability but we cannot deny this set of population who might be gradually developing disablities, for eg failing eyesight, hearing loss or arthritis. - In my observation if the subject matter of how we innovate in order to accomodate disabilities is not addressed it might lead to something that I would like to term as a "Snowballing effect" wherein individuals with disabilites might start developing issues due to added cognitive load of having to deal with the disability without any help which might lead to businesses lose heavily on talent. - Catering to all these points not only sparks innovation but also helps the organisations take on a position of social responsibility. References: https://www.americanprogress.org/article/covid-19-likely-resulted-in-1-2-million-more-disabled-people-by-the-end-of-2021-workplaces-and-policy-will-need-to-adapt/ 5) What organisations are you currently part of who are working in this direction? - I am currently volunteering at a community named "Hackahealth" at Campus Biotech Geneva. - It's one of a kind of a community that I had exactly envisioned. It organises hackathons around the year. - It is a community that supports the development of personalized solutions for people with disabilities, in order to improve their daily living. - It calls for people with all walks of life to come together and do this from time to time. - I am a part of a project that is helping a wonderful lady who was born with hand deformities due to amniotic flanges. The challenge is to come up with a solution that will alter the brake system on her bicycle which will help her apply brake more easily. - This is also something that can be helpful in my case as I too struggle with braking on the bicycle with my left hand. References: - https://www.hackahealth.ch/project-caroline-2021 6) How do you think the design choices be made better and inclusive? ~1 min - I believe design choices have to be made in order to serve as many people as possible. I understand it's not possible to create one size fits all solution since the disabilites in themselves are so diverse. - What is required in my opinion is the provision for adjustments, additional integrations and personalization of existing designs. - Sometimes it's also important to seek out points of exclusion. There are lot of situational challenges too, exclusion can occur on a situational basis. For eg, a lot of sporting activity is out of question for people with ectrodactyly as the sporting equipment needs to be modified to suit their need. - Understanding exactly how the design keeps people excluded can help establish concrete steps towards being more inclusive. 7) You spoke of the support you have received here at CERN, we would like to hear more about it. ~2 mins - I feel people at CERN, be it my collegues, the friends I made here, have overall been very open and accomodating when it came to me talking about my individual experiences as a disabled person or when it came to spreading awareness about inclusion for disabilty in general. - One profound example is, during a one-on-one conversation with my supervisor Carina, I candidly mentioned that I tend to change many key bindings of my keyboard because that allows me to be more productive while typing and also the touchpad on my mac is very accessible for my hand since I can perform a lot of actions through multi touch gestures. She was very proactive in taking into consideration my necessities by passing on this information to our section leader Andreas who again was very proactive to get me a brand new Mac. I was totally amazed by this gesture. I think this action played a huge role in me overcoming my hesitation of me talking about me identifying as a disabled person. It gives a lot of feeling of belonging and working is more fun this way. - Also, this talk in and itself is a huge example of inclusion I feel, I know we have been sharing office together and you yourself Maria being so interested and encouraging me to come up on this platform to talk about it, speaks of all the support. I would like to thank you very much for this opportunity. ## List of people part of this event: 1) [Maria Dimou](https://www.linkedin.com/in/mariadimou/) 2) [Noor Afshan Fathima](https://www.linkedin.com/in/noorfathima11/) ## List of people from CERN who have been facilitators to address requests for accessibility: 1) [Carina Antunes](https://www.linkedin.com/in/carinadeoliveiraantunes/) 2) [Andreas Wagner](https://www.linkedin.com/in/andreas-wagner-8b13b688/) ## List of people who have been part of hackathons mentioned in the talk: From CERN: 1) [Maria Fava](https://www.linkedin.com/in/maria-fava/) 2) [Natalia Trian](https://www.linkedin.com/in/natalia-triantafyllou-728717151/) From outside CERN: 1) [Noor Khuthejatul Kubra](https://www.linkedin.com/in/noorkkubra/) 2) [Komal Kedarnath](https://www.linkedin.com/in/komalkedarnath/) 3) [Mehdi Golbaz](https://www.linkedin.com/in/mehdigolbaz/) ## List of active supporters in the disability and accessibilty discussions and brainstorming: From CERN: 1) [Nikos Tsipinakis](https://www.linkedin.com/in/nikos-tsipinakis/) 2) [Zefy Pisaki](https://www.linkedin.com/in/zefy-pissaki/) 3) [Isma Khalid](https://www.linkedin.com/in/isma-khalid-4165a317a/) 4) [Chetna Krishna](https://www.linkedin.com/in/chetna-krishna/) 5) [Priyanka Dasgupta](https://www.linkedin.com/in/priyanka-dasgupta-820888a7/) 6) [Manya Agarwal](https://www.linkedin.com/in/manyaagarwal/) 7) [Dávid Máté Parragh](https://www.linkedin.com/in/davidparragh/) 8) [Anish Sachdeva](https://www.linkedin.com/in/anishsachdeva1998/) From outside CERN: 1) [Sukriti Paul](https://www.linkedin.com/in/sukriti-paul-72a115126/)