What should the response of designers be to 24 million people almost losing their health insurance under the Trump Administration, including access to vital services like mental health treatment?[1] Should we wait for policy to address this, or can designers help in some way? Mental illness and the stigma around it is a highly complex challenge that raise as many questions as answers. Will we ever be able to create a world where stigma isn’t part of our reality – and if so, what is design’s responsibility to make that world happen, and how might that work grow beyond our efforts as designers? Design has fought public stigma about mental illness via public education advertising campaigns, yet self-stigma – when those with a mental illness internalize negative stigma that they are ‘mad, bad and sad’[2] because they have a mental illness – has not been a focus for design or medicine. One key direction forward to change this may be in how we view mental illness itself and how that view shapes how we treat it.  A recovery-oriented view reframes illness as an opportunity for recovery rather than the medical model that focuses more on the eradication of illness – often without a focus on the skills required to move towards that recovery. While design should work to improve healthcare, it can also create new kinds of interventions and their infrastructures to fight stigma and self-stigma about illness, and we can work within the space of recovery to design new scalable systems to do so.

This thesis explores how to create such a system through a methodology called Lighthouse. Lighthouse uses an infrastructure of objects, rituals, stories and spaces to embed recovery oriented systems of care more into treatment. It harnesses peer to peer support to challenge negative portrayals of mental illness that create a negative cultural infrastructure of stigma that keep it in power as the dominant narrative about mental illness.   Lighthouse advocates for the creation of a positive infrastructure based on recovery oriented systems of care to remove the power of stigma (and self-stigma) and create a culture of participation and support to foster a new view of mental illness based on narratives of recovery as the dominant narrative.  Here peer to peer support becomes a participatory civics culture not only for treatment, but as activism to fight stigma. Lighthouse sits at the intersection of politics, health and design and explores how recovery oriented systems of care can augment existing healthcare and build elasticity for services, and how civic engagement is a core of such work.

My interest in civic engagement and civic design has many previous touch points – my experience as a public-sector employee in Canada, client work with non-profits my experience and my work at Parsons integrating social design, the Urban Commons and Speculative Design into my existing practice.  The lenses of civic engagement and stigma may not seem linked, but an exploration of participatory civics cultures lead me to connect political action by peers and new kinds of communities to how we can fight self-stigma and to see new kinds of personal networks ultimately create supportive infrastructures. The hope is that new types of civic engagement can address illness and broaden our understanding of civic engagement itself to include peers support.  Ultimately stigma is everyone’s responsibility, and collectively we have more power together to fight it than as individuals alone, and approaches like Lighthouse pave the way for that collective action to start and to thrive.

For a summary to get a quick overview of this work, on the Presentations page you’ll find two presentations that summarize much of the project – from research to prototype and analysis.

Note that endnotes are provided at the end of each page, but full endnotes can be found on the dedicated Endnotes page.

[1] Ehrenfreund, Max. 2017. “25 Million People Could Lose Health Insurance Under Donald Trump’s Plan, Analysis Shows”. Washington Post. https://www.washingtonpost.com/news/wonk/wp/2016/09/23/25-million-people-could-lose-health-insurance-under-donald-trumps-plan-analysis-shows.

[2] International Statistical Classification of Diseases and Related Health Problems (ICD) list from the World Health Organization uses the categories of ‘mad, bad and sad’ to classify personality disorders, but I’m using the term to refer to how mental illness in the media is portrayed in general.