Assistive Technology By People with Disabilities, Part II: Designing Better Makeathons
Makeathons and other similar events want to “do good” and “make the world a better place.” The people behind these events need to realize *how* they do them is as important as *why* they are doing them.
Google.org, United Cerebral Palsy of the North Bay, and Tikkun Olam Makers (TOM) held a makeathon in the SF Bay Area this past September focused on assistive technology for people with disabilities. This article and video gives an overview of the 3-day event and the various teams that participated.
This is the second of a 2-part article about Team Free To Pee. They built a prototype pivot-raised sling seat that will assist women in wheelchairs to pee independently. Below are excerpts from interviews* with several members of this team post-makeathon about their experiences and assessment of the event.
Photo by Grace Lin
Interviewees from Team Free To Pee**
Corbett Joan OToole: I submitted the original idea for Team Free To Pee. I am a scholar and activist involved in the Disability Rights Movement in the Berkeley-San Francisco area. I recently published my first book, Fading Scars: My Queer Disability History.
Grace Lin: I am a vent-dependent wheelchair user and a potential user of the Free2Pee design. I am an artist currently working in ceramics.
Carol Maddox: I’m a pediatric occupational therapist with an interest in assistive tech, durable medical equipment, and seating.
Nidhi Rathi: I’m a mechanical engineer and I’m a designer/maker on this team. I have a mechanical engineering background and I design consumer electronics at work. I know how to machine stuff.
Wanda Katja Liebermann: I’m an architect and scholar of disability and design. On the Free To Pee project I saw myself as an observer, critic, and occasional contributor.
Sascha Bittner: I use a wheelchair and can’t use the bathroom on my own. Rich Arp is my partner and has been passionate about this issue even before we dated. In makeathon terms, I am a “need knower” and Rich has more the mechanical knowledge to help fix it.
Rich Arp: I’m Sascha Bittner’s partner. I’m a “maker.” I came up with several design ideas, one of which became the design we built. During the event I did much of the metalwork. I also provided the wheelchair we used as a platform for the device.
Photos by Grace Lin
Overall Takeaway Lessons
Carol: I can say that the design we came up with was way too big to be completed in three weeks, much less a three-day process.
Nidhi: It was intense, stressful and packed, but life-shaping as well. It taught me a lot about leadership and engineering skills I need to improve on. A key takeaway for makeathons is not to try to make the full product, but make proof of concepts to show the idea.
Positives of This Makeathon
Carol: The excitement and energy generated is amazing and the camaraderie of so many people in the same space trying to create great things is wonderful and inspiring.
Rich: I felt very inspired by the other work going on around us and the other like-minded and knowledgeable folks. I learned some new machining equipment skills, especially with the mill. I also learned some about how Arduino works with motors.
Sascha: Our team members thought we were pretty good about listening to the “need knowers.”
Grace: So many people worked together to generate so many creative ideas. I wish there was a way I could thank each and every person who made this event happen. It was an awesome experience.
Limitations and Negatives of This Makeathon
Carol: An event like this lends itself more to smaller, more defined projects, at least if the end result is expected to be a finished prototype…alternatively, it can be good place for brainstorming and coming up with a concept for a bigger solution.
Rich: The small amount of money available for the projects was a big limitation. The fairly short time allotted is difficult. Misunderstandings in the group were also very hard.
Sascha: I think both the good and bad part is “need knowers” as we were called were able to work with professionals from Google. It made it a very dynamic process, but I think those of us who had been thinking about this longer got a bit frustrated by those who joined the team after the makeathon process started.
Grace: The Techshop space [site of the makeathon] is too small, especially with four wheelchair users all together. I wish we were allowed to see the space before the event, so we know what to expect, and to get an idea of how it operates. There are things that we could’ve brought from home to make our project done faster. For example, with the final presentation we didn’t have the board to present our ideas. We had to make a board with boxes covered with white paper in a very short time.
Corbett: The makethon has a lot of great resources but also some significant limitations. The project had to go from idea to working prototype in one month – with a group of total strangers working on it. The makeathon offered some great resources, such as a paid one-month membership to the TechShop, but TechShop does not allow seated people to operate a lot of their machines so our wheelchair members cannot use it.
Wanda: I’m skeptical of the whole makeathon experience. On the one hand, it’s great that a company with such enormous resources puts effort into this. On the other hand, they basically got a ton of free labor from their employees and others. And they have no obligation (or interest, apparently) in really taking on most of these projects with the funding and management that they need to succeed. Such a complex problem as this one needs sustained investment. I was feeling quite cynical at the concluding awards ceremony. I had to remind myself that the project had educated and emotionally affected a new group of engineers and that it had been a good experience working with everyone.
Photo by Grace Lin
Accessibility and Inclusion of People with Disabilities
Carol: I would like to see more people with disabilities involved in the planning and organizational process as well as in the actual implementation. They tried really, really hard, but I got the feeling they didn’t have any insiders with disabilities to school them fully. This could prevent transportation disasters that we experienced (offering free Lyft vouchers for people staying late at night and having no idea that people who couldn’t access those vouchers might ALSO need to stay late and need a way to get home safely as well).
There was a tendency to discount the people with disabilities as just “need knowers” versus integral parts of the teams. Our group had leadership by people with disabilities right from the start so it was easier for our folks, but other groups who didn’t have the chance to meet the proposers of the projects until the start of the event had more of a tendency to feel more like “helpers” than partners in the process.
Corbett: Not having disabled people on the decision-making executive team is like creating a makeathon designed to solve problems for women and having an all-male executive team, not allowing women to enter the building with a man opening the door for her, and not allowing women to use the tools at TechShop.
Photo by Grace Lin
Recommendations for Future Makeathons
Carol: TechShop could make some simple modifications to their workspaces so they can be more accessible to wheelchair users…the organizers have to be aware that wheelchairs need space to move around, people who use wheelchairs or have other disabilities may have different needs for transportation.
Sascha: I felt that (not our team members), but the makeathon staff/volunteers were pretty patronizing. The makeathon was co-sponsored by United Cerebral Palsy, which isn’t a bad organization, but I think the Independent Living Resource Center of San Francisco (ILRC) should have been involved. It definitely needed some shot of the Independent Living philosophy and more people with disabilities in the planning process.
People should know we have really great ideas and that we don’t want this equipment and technology to be “inspiring,” but to help us live as independent lives as possible.
Photo by Grace Lin
What can you accomplish in a 72-hour makeathon? Quite a lot, just by looking at Team Free To Pee’s stories and images. The members of Team Free To Pee had disabled people driving the project from the start; one factor to its successful collaboration. Having people with disabilities as “need knowers” is one partial step toward inclusion—the key is the level of respectful engagement between the disabled and non-disabled team members.
Earlier this summer I co-organized a community dialogue with the ILRC about assistive technology and people with disabilities for the organizers of this makeathon. People with disabilities shared concerns about accessibility and inclusion—the very problems that Team Free To Pee faced before and during the makeathon. Makeathons and other similar events want to “do good” and “make the world a better place.” The people behind these events need to realize how they do them is as important as why they are doing them.
Makeathons that are centered on people with disabilities and technology created by and for them should have the following features (at a minimum):
- Paid staff or consultants that are people with disabilities responsible for decision-making, planning and execution
- Clearly stated policies and information on accessibility and accommodations to prospective participants at the onset
- Availability of self-care and personal assistance support
- Accessible event spaces, classes, transportation, materials and online content
- People with disabilities on the judging panel
A widely used phrase in the disability community is “Nothing about us, without us.” This is a very simple principle for any event organizer. Structural and attitudinal barriers like the ones reported by Team Free To Pee members participants exclude people with disabilities, depriving maker and hacker communities from their unique perspectives and abilities.
TOM’s recent partnership with MakerBot, the Assistive Technology Challenge, did not mention people with disabilities in their description of this makeathon; it was an event that:
…brought together engineers, developers, designers, and hobbyists to develop hardware and software prototypes designed to meet the needs of people with disabilities.
What about the contributions of people with disabilities, the “need knowers” of the makeathon?
People with disabilities are makers/hackers who have valuable skills and lived experiences. A recent tweet quoted Jessie Lorenz, Executive Director of the ILRC: “Disability activists are the original hackers: forced to be creative.”
The question is whether the tech industry is willing to listen.
*Interviews have been condensed and edited for space and clarity.
**Team Free to Pee members: Rich Arp, Tara Ayres, Sascha Bittner, Wanda Katja Liebermann, Grace Lin, Carol Maddox, Maya Odei, Corbett Joan OToole, Amita Pawar, Anurupa Rao, Nidhi Rathi, and Harish V.