Hack-cess Granted: An Inclusive Design Challenge

The specific challenge that we wish to address is rooted in the intersection of racism, ableism and sexism within STEM. there are few women in Computing. according to the 2021 Taulbee survey slightly over 23% of Ph.Ds granted in computer science went to women, 0.1% for nonbinary individuals versus over 76% for men. For computer engineering almost 20% of Ph.Ds went to women and over 80% went to men. Across all Computing Sciences in the Taulbee survey over 75% of phds were granted to men and almost 25% to women. We see similar disparities across racial and ethnic bound backgrounds. again according to the toll be survey 1.3% of phds in computer science were granted to those who are black and over 18% went to White individuals. According to the diversity and STEM women, minorities and persons with disabilities report 29% of men are represented in the workforce and 18% of women are represented in the workforce. The report goes on to show that “...Asian workers had the highest share employed in STEM (39%), whereas the lowest share was among Black workers (18%). Within the other racial and ethnic groups, 20% to 25% worked in STEM. Workers with one or more disabilities represent a small proportion (3%) of the total workforce. Among workers with at least one disability, 21% worked in STEM occupations, which is slightly less than the 24% of nondisabled workers in STEM occupations.” The factors impacting these numbers are predominantly rooted in perception. in the 2022 report entitled The Working Reality, which focused on barriers to employment for disabled people in Rochester, New York and Monroe County, Attitudes were the predominant barrier for accessing employment or education. A multitude of barriers outlined in the report are compounding over time leading to low educational attainment in K-12 (14.2% lower high school graduation rate than nondisabled peers), which ultimately impacts how many disabled people are entering undergrad which then impacts their ability to graduate and become gainfully employed (12.2% of disabled people in Rochester have a Bachelor’s or higher versus 27.4% for nondisabled people.) The report also highlights some of the following barriers in STEM as reported by those who are disabled:

• Lack of knowledge on how to teach inclusively

• Lack of accessibility within the lab

• Difficulty in getting accommodations at their current institution

• Fear of the unknown about getting accommodations at other institutions, meaning that they cannot move from postdocs to postdoc or grant to grant across the United States like their nondisabled counterparts

Additionally, the Working Reality report highlights gaps and lack of access in after school programming and inclusive curricula for disabled students. Overall our solution aims to address the issues in pedagogy in K through 12 and bridge that gap into undergrad by co-creating solutions with teachers, professors, and the disabled students themselves. 

Citations: Diversity in STEM: Women, Minorities and People with DisabilitiesTaulbee Survey

WorkingReality Report

Simply put, our solution is based off of a hackathon/design challenge. We will gather together high school science teachers, college professors, such as engineering, disabled high school students (juniors and seniors), and disabled college students. We want to give them an existing product, like a Lego-Mindstorm (but this could also be Arduino kits, Makey Makey, other gaming units or VR) and have them build that product while asking questions and co-creating a curriculum that could be used by after school programs, other science teachers etc. 

Through the design challenge the high school students learn a bit about college level topics and activities, the undergrad students will gain experience and project management and developing design challenges as well as teaching and leading a project, and the educators will not only learn from the students but from each other. This approach will hopefully give us a 360 view on what is needed from all sides in order to help disabled students succeed. This co-creation ensures community buy-in (a core part of disability culture is "Nothing about us without us) as well as giving students something tangible that they can be involved in and put on their resume moving forward. We envision that each group will have some of the following key learnings and outcomes:

• HS students learn a bit about college level topics/activities & problem solving

• College students - leadership, learning opportunity, transcript/resume item (eventually college credit/stipend to do this work)

  • Conflict resolution, access friction, time management

• Educators - professional development

We think that this could be scalable because we are scaling knowledge and not an actual program. The ideal goal would be for existing programs and educators to take these learnings and incorporate them into their offerings so that more disabled children can take advantage of these opportunities. We would also be able to expand this to different types of disabilities to increase inclusiveness of the curriculum. We also will be able to ask the educators what their takeaways were from their particular viewpoints and what supports they think that they would need in order to make such a curriculum happen in their own institutions.

We also see this as an opportunity for an educational Institution like the Rochester Institute of Technology to develop deeper relationships with the Rochester City School District and surrounding school districts, parents of disabled children, the overall maker community and disabled advocates.

Particularly for the Rochester City School District there are not many opportunities to engage in STEM outside of one after school program for robotics. This program is limited in budget and staff and to be able to expand this type of programming across the district and to be inclusive of more disabled children. This is a gap that currently exists within the Rochester Community as we learned in interviews for the Working Reality report, interviewees discussed the gap in inclusive after school education that is not well addressed as the skills and knowledge are not there by program providers. Additionally, countywide, there is a lack of inclusive curriculum as regards STEM programs in the K through 12 space. Targeting the Rochester City School District, which has a long history of issues with special-ed and also where the majority of disabled people live within Monroe County.  This project fills the need that is missing within the community. 

As a Project Lead who is disabled, Black and femme presenting, not only do I live within this community but come from the very target population. Kristen also brings proven methodology and research experience with disabled individuals. By having disabled students themselves be a part of not only the design process but building on the curriculum we can ensure that this process is truly inclusive of their voice and is line with the principal of disability justice known as leadership of the most impacted. Furthermore, this approach is in line with the motto of the disability community overall of nothing about us without us. This is not just a group of non-disabled people dictating to disabled people what it is that's needed but disabled people co-creating what it is that they need in order to succeed. 

Additionally another one of the core principles from disability justice is cross movement solidarity. This is why K-12 Educators and college educators are included as well as the overall community and how this project will move forward. We're not trying to create what the disabled community has termed a disability dongle, like tech gloves that can translate ASL, but something that is useful and impactful and could be replicated across communities; knowledge sharing is more scalable than a program and we aim to share this knowledge across communities.

Luticha Andre Doucette: As a team lead at the time of this writing I'm celebrating 38 years as an incomplete quadriplegic and traumatic brain injury Survivor. I've been black all my life. As a graduate in bioinformaticsI'm intimately aware of the challenges that disabled people still face in STEM because they are the same challenges that I faced. One of the taglines of my business is to see the humanity behind every data point. Not only am I a statistic of the very few who are black, disabled and Femme who graduate with a degree in STEM, but I'm also the statistic of those who are black and disabled who do not get an advanced degree in STEM. What I would like to contribute as my legacy is that no one experiences the barriers to inclusion that I faced and continue to face. Additionally, as part of my practice I have built an accountability board of disabled people of various disabilities and ages that continually check my work and hold me accountable to the values of disability Justice; they are freely available to answer any questions about my methodology and approach to research. I don't just interface with agencies but I exist within many different disability Community groups within the Rochester and Monroe County area. 

Kristen Shinohara

I am a faculty member in the Golisano College of Computing and Information Sciences at the Rochester Institute of Technology. I am a non-disabled Japanese American woman, with work experience in computing in industry and academia. As a college undergraduate, I was often one of three women in my computer science courses of 35 or more students. Sadly, over time I’ve continued to often be the only woman in the room—sometimes the only woman on the entire floor of a building—both as a software engineer and now as a professor. Consequently, I have experience with things like being mistaken for the other Asian woman in the company, being hassled for having “my own bathroom” as the only woman on the floor, or dealing with unwanted attention. Additionally, it was nearly 20 years ago that a blind friend lamented to me (as a software engineer and master’s student at the time) about the disparity of technical inaccessibility she experienced. Since then, I’ve been researching computing accessibility. Over the years, my work has focused on the social dynamics that influence technical accessibility in collaboration with the disabled community. As a graduate student, I enrolled in a Disability Studies course and devoured books and papers on the subject. As a result of these experiences, I engage a lens of support and accountability; what can I do to increase and improve access, how can I use my role to elevate disabled scholars and future tech professionals and to adjust the culture and conversation in tech to infuse inclusive practice. My current work pivots assumptions about who are technology designers and leverages this perspective to critique inaccessible methods and re-imagine tech design to be accessible to disabled designers.

Dr. Kristen Shinohara's past research has included groups of 20 or less (Remotely Co-Designing Features for Communication Applications using Automatic Captioning with Deaf and Hearing Pairs) and we are looking to build upon her research in co-collaborating solutions for disabled individuals. Luticha's experience in co-creative disabled spaces have focused on spaces of  25 or less as that is ideal for disabled individuals to learn in. Co-creating solutions though is part of the lived experience of disability and Luticha has impacted thousands with their creative solutions and approach. The disability justice model that Luticha works in is a proven effective strategic for disabled individuals as this is how we live. 

We see this project as an opportunity to develop deeper relationships across Monroe County as well as access to National and state organizations. Rochester Institute of Technology the resources that Kristen bring to the table is amazing. the university is a whole is always looking to develop deeper relationships with community and in my work I'm always looking to bridge the gap between community and the institution that I am an alumni of. so being able to access a network of Resource Partners across Industries and sectors, building that peer Network to build the community of practice is really the goal of this project. and because we're building off of much of the work that Kristen has a body of research as well as my own experiences within Community we know that this is a perfect fit for this challenge. so we're looking for building relationships with Community Resources such as local schools and after school programming as well as the parents of disabled students and disabled students themselves, tapping into the maker community and the overall Tech Community locally and nationally, as well as accessing the materials needed for the project and hopefully that will come from the community as well. even getting access to the industry as a whole and looking at companies that would be involved to further this project and make it a meaningful experience. Kristen's research shows that this is possible and small scale but now it's tested at a bit larger scale which is why it makes it perfect for a pilot.

Done with voice to text so you get all the errors: I guess this is where I humble brag about myself. I've been black all my life but was disabled in a car accident and 1985 where I sustained a traumatic brain injury and a spinal cord injury that left me an incomplete quadriplegic. But I've been a science nerd my whole entire life and was raised by Reading Rainbow, Bob Ross, Mr Wizard and Bill Nye the Science Guy. as a disabled child that was often in the hospital Syfy shows like Star Trek and the aforementioned individuals really shaped me. I was hooked on science and believed that I would become a doctor one day. However, the reality of being physically disabled as well as having an intellectual and developmental disability meant that I was ostracized in school as well as not seen as worthy of an education. I grew up prior to the Americans with Disabilities Act or even the realization of IDEA and so therefore I had to go through competency testing just to even enter first grade with my peers as the school board recommended that I be institutionalized. My mother, having lived through Jim Crow in New Orleans, did not know anything about the Rehabilitation Act of 1973. What she knew is that nobody should discriminate based on who they are. On my first day of school she relates how the teacher asked, “Mrs Doucette what do I do with her?” And my mother just simply said, “Your job. Teach her.” The barriers to education existed throughout the entirety of my educational career but I was able to graduate with honors from Fairport High School with an IEP (which was rare at the time). Entering undergrad (in 2001!!!) and wanting to move forward with a Science Education was extremely difficult and my first round of school I dropped out due to health reasons but also did not do well because at the time there was no real access for disabled students entering college. Nobody at that institution (Drexel University) was able to guide me, the Americans with Disabilities Act coordinator was a part-time role that existed in a walk-up building. It took me several years to go back to school where I entered Rochester Institute of Technology and even there I experienced some of the same barriers as before. This time though I had professors who believed that everyone deserved a college education. I was able to do undergraduate research with Dr Paul Craig what often attribute our lab is being the Island of Misfit Toys. It was with Dr. Craig that I developed protein prediction algorithm and it was my research that allowed me to go to do a post Baccalaureate Fellowship with National Science Foundation funding at the University of Rochester. I also was an Innovation Fellow with Professors Stephen Jacobs and Jon Schull and that is where I delved into adaptive/accessible design. Some of the barriers that I faced at Rochester Institute of Technology was the policy that I had to physically do the work myself. however none of the labs in biology General chemistry or organic chemistry or suited for a student who used a wheelchair 100% of the time. therefore it meant developing relationships with many of the staff to co-create Solutions. One of our biggest accomplishments was co-creating and adjustable height organic chemistry Hood as the Americans with Disabilities Act was a limiting factor for someone who was in a wheelchair. This design was created as an open source model so that it could be replicated in any other institution and as far as I know the Rochester Institute of Technology is the only such institution to have such a setup. However, to Advocate to get above and beyond what the Americans with Disabilities Act had as their guidelines led to a significant delay in my graduation. I had similar experiences at the University of Rochester and trying to get adaptive equipment so that I could do my job and dependently. It was because of my experience at RIT that I was able to successfully Advocate to get what it is that I need. However, the stress of an inaccessible environment as well as the impacts of racism on my health led me to go into a different direction and continue doing research at the government level. I never obtained anything higher than a bachelor's degree and my working reality report highlights many of the same barriers that I faced throughout the entirety of my education. even Voice to Text technology which I now use often is not Suited for my very small voice. is it my passion that my legacy is to help other disabled people not experience the Barriers that I have faced for the entirety of my life. because of my advocacy I've won awards one being the Susan M. Daniels Disability Mentoring Hall of Fame from the National Disability Mentoring Institute, I won the Distinguished Alumni Award with the Rochester Institute of Technology, I've been honored by the Links Society for my contributions to the Arts, but more importantly was the honor of being told by the late Bruce popper of 1199 SEIU that my research unemployment barriers in wage disparities back in 2017 was used in the fight to win the fight for 15 that positively impacted tens of thousands of workers particularly those who are in home care you're in Monroe County. Knowing that I have mentored disabled people who have gone on to become executive directors, obtain their own education and getting master's degrees as well as bachelor's degrees it's really what is the most impactful for me. the work I do not only in my business or I encourage everyone to see the humanity around every data point doesn't just impact other people but I selfishly do it for myself. I want to not just be the change that we wish to see the world but do the change that we wish to see in the world and to live the change that we would to see in the world. I take my community with me wherever I go

Our solution is innovative because it centers disabled people and comes directly from what they have said they needed. This is not about dictating to disabled people on what they need, but truly abiding by "nothing about us without us" It's also scalable because it is about knowledge building and sharing, not about a program.

We want to impact the gap of lack of inclusive curricula within STEM. Having curricula developed by and for disabled students is needed as outline in our report. Building connections across disabled students, advocates and educators is needed. We will go back to those interviewed in the Working Reality report as well as community organizations and educators to help expand on the work we've already been doing. The community has already indicated the need for this solution and we are poised to deliver.

The biggest indicator will be from those in the design process, is this useful to them? What disabilities did we develop this with? Because currently, no curricula exists in the community this is a binary project, was it created? was is useful to participants? what resources are needed? 

The Working Reality report highlighted the gap in inclusive curricula and Dr. Kristen Shinohara's extensive research shows why we see very few disabled individuals continue in STEM. Our theory of change comes from the disability rights and disability justice community's over 40 years of advocacy. When solutions are built with disabled people leading, everybody wins. The long term impact of truly inclusive curriculum is better empathy, increased social-emotional skills and for students, potentially a career in STEM. 

Dr Shinohara's findings can be found here:

https://dl.acm.org/doi/abs/10....

https://dl.acm.org/doi/abs/10....

long term impact of lack of inclusion is outlined in the Working Reality report: bit.ly/catconhome

Our solution will use existing kits to create a design hackathon. We're testing what adaptive tools might be needed, what communication is needed, and how we can use multiple disciplines to create inclusive curricula around the kits. 

two people are currently in this project: Luticha and Dr. Kristen Shinohara

Luticha has over 25 years experience and Dr Kristen's research dates back at least 2011

Nothing about us without us and the principles of disability justice are not just abstracts, we live and are this work

Luticha has first hand lived through the barriers to science education as a Black disabled femme and Dr Shinohara has also experienced this as a Japanese American. Our combined lived experiences inform and drive the work we do. 

Currently, I plan to approach our community foundation for further grants and ask our local tech companies to fund this work. Because our solution is knowledge based, we only need funding for proof of concept. The goal is not create a program but scale through knowledge sharing.

We are still in the pilot phase and have done grant funded work thus far.