Below is a text copy and PowerPoint presentation of Dr. Karen Yoshida’s (Associate Professor, Department of Physical Therapy, University of Toronto) presentation at our December 2017 event, Disability, Technology, Inclusion: A Symposium on Interdisciplinary Research, History Exhibits and Pedagogy. This presentation has been made available and archived to increase accessibility.
Out from Under: Disability, History and Things to Remember. Gaining and Creating Access to activist knowledge
Karen K. Yoshida Ph.D
Invited Keynote Presentation to the Symposium on Interdisciplinary Research, History Exhibits and Pedagogy
Carleton University, 252 MacOdrum Library, Dec 8-10, 2017
Thank you. It is great to be here.
As a point of access. I will be reading my paper and some of you may have it in a format that is accessible for you. I also have a ppt with text and a number of visual images. The text on the ppt slide is part of the paper and is bolded for easier reference. I will also describe the visual images that are part of this presentation.
I was asked to speak about my experiences with the Out from Under: Disability, History and Things to Remember exhibit, curated by the dynamic and creative team of Kathryn Church, Catherine Frazee and Melanie Panitch from the School of Disability Studies at Ryerson University.
IMAGE 1. – Melanie, Catherine and Kathryn at Baxter’s Harbour
When I was first invited by Beth, it was important for me to ask Kathryn Church to co-present this material given her leadership on this exciting exhibit. Both Catherine Frazee and Melanie Panitch have since retired from the School but continue to be engaged in social change activities.
Kathryn was keen to speak with me and unfortunately as Chair of the School had other commitments that prevented her from attending. I acknowledge her many contributions to this talk as she has been generous in sharing information and images that she had related to Out From Under, so I feel that she is co-presenting with me today.
Out From Under: Disability History and Things to Remember, is a product and project that involved faculty, students and others attached to the School of Disability Studies at Ryerson University. As far as we know, “Out From Under” is the first exhibit of activist disability history in Canada. It is a critical inquiry to showcase what had been private or hidden histories of disability and to represent these histories using objects.
I will speak to my involvement in the Out From Under as a co-developer of one of the 13 exhibits, “ Breathing” that comprise the exhibit. From its humble beginnings as a course, to its evolution as an exhibit. I will share with you my experiences of bringing OFU to the public domain – through the many venues we have presented this collective work, notably at the Royal Ontario Museum in the spring of 2008? The ParaOlympic Games – Cultural event in 2010 and to it’s permanent home, as a translated exhibit, in the Canadian Gallery of the Human Rights Museum in Winnipeg, beginning Nov. 2014.
SLIDE 2 – Curatorial Team & Contributors
The focus of the talk will also be on issues of access- specifically gaining and creating access. Access in all of it many complex forms, physical, interactional, informational. However, access is more than admission to, or right of, or entry to something.
Mia Mingus states that access and its logistics are important for disabled people to engage in the world and connect with other disabled people.
PPT- However, she suggests that “access (also) be viewed as collective and interdependent” (Feb, 12, 2011) I would modify this by saying that Access is a collective and interdependent “on-going project”. I suggest that the Out From Under has exemplified this access.
In many ways, Out from Under has further solidified my work as a DS scholar and reinforced my commitment to continue to engage in academic-activist scholarship.
SLIDE 4- Getting Started
Kathryn, Catherine and Melanie had accepted an invitation by the Abilities Arts Festival to create a disability history exhibit. This organization showcase artistic excellence by disabled artists in the visual, film and performing arts, each year in Toronto. The plan was to create an exhibit for public display for 2008.
To start this process, they created and taught a Special Topics course in the Disability Studies program entitled, “Exhibiting Activist Disability Histories” in the Winter of 2007. To maximize the potential of this course, the team broaden the definition of who would be considered a student” for the purposes of this course. Disability studies students (diversity of differences ) did register for credit. Others who were alumni who wanted to be part of a unique opportunity and leaders and allies within disability communities, also were invited to participate because of their knowledge and organizational connections.
The mantra of “Nothing about us, without us” ( James L. Charlton 1998) is integral to this collective work.
The requirement was to bring an object that could be used to tell a story of Activist Disability history.
Slide 5. Taking up the invitation – A serendipitous connection.
I received the notice of this course in the Fall of 2007 and I thought immediately about an interview I had conducted for a research project regarding the emergence of the Self Managed Direct Funding in Ontario in the mid 1990’s.
Like to emphasis the importance of research and teaching partnerships with disability communities.
I conducted this project in partnership with the Centre for Independent Living in Toronto with the late Vic Willi, Executive Director and Ian Parker, both leaders in the attendant service movement in Ontario. For me, this research partnership was a natural extension to the partnerships that I had with the disability rights community in Toronto with respect to teaching since 1991.
This project was part of SSHRC’s commitment during the mid 1990’s to fund disability research projects that would advance the rights of disabled people. In examining the emergence of Direct Funding Attendant Services in the province of Ontario, I interviewed disabled people who used attendant services, policy makers and leaders within the attendant service community. I interview a woman named Sheila Keogh around 1995, who was using this model of service. During our interview at her home, Sheila told me a story of how she came to start living in the community in the first place.
This is Sheila Keogh’s and her father Reverend Roy Essex’s story.
Slide 6- Describe IMAGE – PHOTO OF THE ROOM FULL OF IRON LUNGS (staged shot of iron lungs in California)
Sheila contracted polio in 1949 as a young woman and it resulted in her inability to breath on her own. We know that the majority of people who contracted polio did not result in respiratory paralysis, but pictures, such as this one, instill a fear of the polio epidemic.
Slide 7- Describe – IMAGE – Describe – older Sheila besides the iron lung that she used in the Hospital
However, Sheila was one who needed to use an iron lung to breathe and she did so in an institution. During her time in the institution, she was able to use a portable ventilator that was strapped on her chest.
Slide 8. Describe IMAGE –CUIRASS PORTABLE VENTILATORS – SEE PHOTO OF EXHIBIT ( Cuirass ( French for chestpiece) was a rigid fiberglass chamber in a shape of a turtle shell that fitted from armpits to lower abdomen. It was held in place on a person’s torso by straps fastening around the back and was made airtight by an inflatable rubber seal fitted around its outer edges. A hose was attached from the cuirass to a negative pressure pump which operated much like an intermittent vacuum cleaner.
Sheila retold her experiences of how people’s respirators were often turned down by the staff at night, so that people could “learn to breathe” on their own. Sheila begged her father to get her out of the institution as she feared she would die there. Rev. Roy Essex decided to take his daughter out of the institution and use this technology at home. According to Sheila, the medical staff basically said, “if you take her out of here, you are on your own”.
Sheila did very well at home with the portable ventilator. However, one day, it started to malfunction. Her father call the company in the United States where they were made and they talked him through how to fix the machine. The company invited him down to learn how to maintain and fix the ventilators. He helped fix his daughter’s machine and he discovered there were others in Ontario who were using the ventilators to live in the community.
Slide 9 Describe IMAGE – Roy Essex – with suitcase
Over the next 30 years, Rev Essex travelled the province, with the help of the Ontario March of Dimes, maintaining and fixing these portable ventilators for people living in the community.
Slide 10 – Describe IMAGE – Audrey King – colleague
This was the story that I wanted to bring to this course. I approached a colleague Audrey King, a woman who, in her own words, lives with the consequence of the polio virus”. I thought we both could bring our perspectives to this story. Audrey had worked with me on other community research projects.
When I visited Audrey and told her about this great story that I thought would be a good fit for this course, she listened and said nothing for a moment after I had finished. She finally said, “Roy Essex came and fix my ventilator when I was growing up in Ottawa. When I decided to come down to Toronto to work, he said that I should contact his daughter Sheila and I did, and we have been good friend every since”.
I did not know that Audrey was connected to Sheila or Roy Essex. Now we were all connected and I knew that we had to take the course and present this object (Cuirass portable ventilator) and this story based on the object.
Slide 11. In the classroom
In the first session, Audrey and I were among 13 others- we were mostly women (two men), some disabled (visible or invisible) or not, student alumni, leaders and allies within various disability communities. We had brought a diverse collection of 13 objects – documents, posters, a shovel, an old trunk, an IQ test circa 1960, a 1930’s program from the Shriner’s Circus that a student had purchased off eBay and a Canadian flag that had been stored for a couple of decades in a closet.
The course was teaching and learning by discovery. According to Church (2008):
PPT – “The work of the class was to trace the trajectory of each object from its situated-ness in particular lives outwards to issues and debates, organizations and institutions that give those lives broader societal significance. The personal is tangibly political in this approach”.
Each person presented their object, how they found it, and why they thought it was importance.
Slide 12. Describe IMAGE – Carrie introducing the IQ test.
Slide 13. Second Session
In the intervening weeks, we dug deeper into our objects and provided a mock up of what we thought our installation should look like.
Slide 14. Describe IMAGE – Early sketch of installation by Audrey
For out installation, Audrey had some related objects to Sheila’s story. She had a newspaper photo of Roy Essex, suitcase in hand, existing a plane. Sheila gave us some of his tools that he used in this work. She didn’t have her father’s suitcase, but we knew we wanted that to be part of the installation.
For Audrey and I, connecting the object to a broader context was not difficult. Both Audrey with her lived experience of polio, using an iron lung as a child and myself a non-disabled ally, were congnisant of how polio, like other conditions, came under the umbrella of medical expertise during this time. In addition, this story of Sheila connects to a community of disabled people who were living their lives outside of the institution, working, going to school and having families.
I will give another example of how that went:
Slide 15. Describe IMAGE- Ruth Ruth Stackhouse connecting images of the three women she was researching to the issue of unpaid labour in psychiatric hospitals.
Each person again shared their materials, ideas and thoughts about both the content and the presentation of these objects. It was an enthusiastic and supportive group to share and give feedback on our ideas.
Slide 16. Describe IMAGE – All of the class
Enter the Designer
By the end of the formal course, the group had assembled an interesting “science fair” kind of presentation, which we presented to the Summer Institute on Disability Studies. While these students were enthusiastic of our work, as a group, we talked about the importance of moving our presentations to the next level. One that could be used for public display and had a look that was polished and cohesive. We didn’t want it to look like a high school exhibit!
The curatorial team knew this as well. If the project was going to be taken seriously in the world of museums and to reach a broad public, we needed to engage the services of an experienced designer. They choose Debbie Adams of A plus a Design in Toronto to bring her museological skills to work on our project.
Slide 17. Describe IMAGE – Kathryn and Debbie Adams
This was an interesting time. Debbie was in the audience during the summer institute and listened to all of our presentations. She with the curatorial team and contributors about what would actually work for each installation – omitting some content, adding other. We were asked to re-write or re-work content more concisely, to try and obtain better quality newspaper clipping of Roy Essex, photos of how the cuirass would be worn, negotiating borrowing a cuirass ventilator from a hospital in Toronto.
Debbie used all of this material and did mock-ups of the exhibit. Debbie did a brilliant job on this and two decisions are particularly important. First decision- She suggested a German made display system called CLIC that is comprised of interlocking aluminum tubes, joints and trays. Debbie called it a giant tinker toy and that it was lightweight, easy to install and reconfigure depending on the space for the exhibit.
Second decision – Debbie suggested that each of the 13 installation have a one word title. The word would be an action and convey the essence of each installation. For our installation, this was easy – “Breathing”
Here are some other examples and artist rendition of two installations:
Slide 18. Describe IMAGE – Graphic one of the title
Slide 19 Describe IMAGE – Graphic two of the Dressing installation
Slide 20 Describe IMAGE – Graphic three of Measuring
Abilities Arts Festival
We made the deadline for the Abilities Festival in October 2007. The display system was assemble by the team.
Slide 21. Describe IMAGE – Reading the blueprint and laying the first level
Slide 22. Describe IMAGE – And onto those tubes you hang the panels by snapping them onto screws with small elastic bands.
Slide 23. Describe IMAGE – You hang the title Banners
Slide 24. Describe IMAGE – OFU- Abilities Arts Festival
We received an extremely warm reception and had many visitors in the following ten days of the Festival. One visitor was a well-connected to the Office of the President of Ryerson University (Sheldon Levy) and two others were from the Royal Ontario Museum (a member of the Board – Christine Kraytza? And a senior curator. (These visitors were not by accident!).
In the coming weeks, the President’s office would provide the team with crucial funds for further development, while the women from the ROM would gain the exhibit access to that venue for the spring of 2009.
Slide 25. ROM
Working towards the exhibit at the ROM meant that Debbie had to redesign the exhibit for a much larger public space. The exhibit’s accessibility features were enhanced. We had a video of the contributors explaining their installations (ASL), artist statements in braille and touch objects that ROM volunteers would bring out for visitors to touch and ask questions.
The curatorial team also had to do ongoing fund raising, plan a gala opening and develop some programming during the run of the exhibit.
Slide 26. Describe IMAGE – Down the elevator with the packaged objects
Slide 27. Describe IMAGE – Arriving at the ROM loading dock
Slide 28. Describe IMAGE – Unloading objects
Slide 29. Describe IMAGE – A new and cavernous space, somewhere between Africa and the Americans
Slide 30. Describe IMAGE – An expanded, redesigned, fully enclosed and internally lit display system
Opening day at the ROM and the gala celebration for the exhibit. It came less than two years from the invitation that was extended to Kathryn, Catherine and Melanie.
Slide 31. Describe IMAGE – Whole group at the ROM gala. Dressed in our finest!
Slide 32. Describe IMAGE – Breathing Installation
Slide 33. Describe IMAGE – Audrey and I – in front of the installation
Slide 34. Describe IMAGE – Sheila Keogh in front of the installation
Dressing: Sandra Phillips
Slide 35. Describe IMAGE – Sandra holding up the plain grey sweat suit; sweat suits on the table for the summer presentation
Sandra Phillips is interested in clothing…. And in rights. Sandra worked in an institution in the 1970s. The most powerful memory she has of that time is of the single most prevalent institutional “outfit” – the nondescript, grey sweat suit. In choosing this object to contribute to the exhibit, Sandra was struck by how well it represented the monotony, anonymity and routines of institutionalized life.
Slide 36. Describe Sandra’s Final installation
We displayed not one but sixteen sweatsuits as part of the installation called Dressing – stacked untidily on top of each other in a set of shelves. Each one represented an institution that was inhabited by people with intellectual disabilities in Ontario. We enhanced the message with an old image of six identically-dressed, unsmiling inmates from an unnamed institution – continuity of dress over time.
Our text highlighted the fact, at that time in 2008 that, despite policies of deinstitutionalization both federally and provincially, thousands of Canadians with intellectual disabilities live in conditions as drab and formless as the track suit. At that time, nearly 500 still live in Ontario’s three remaining institutions: Southwestern, Huronia and Rideau Regional Centre. “This installation honours every small claim to individuality attempted in institutional confinement – whether by gesture, deed or some expression of personal style.”
Since the development of this installation, the three remaining institutions have been closed, with Huronia closing in 2009.
In speaking to Jay Dolmage:
The settlement process was made very difficult by the ministry, with many people unable to file the paperwork. For those who did file, the settlements have largely been completed — though people received much less money than what has been presented in the press. The vast majority of people who got any money at all got less than $10,000 — many getting only around $2,000. The settlement itself was for $32 million. Lawyers got about 12 million.
Slide 37. Paraolympic Games and Cultural events – Disability Arts and Culture- Kickstart Festival 2010
Slide 38. Describe IMAGE – UBC Robson Centre – Vancouver
Slide 39. Describe IMAGE – Main Door
Slide 40. Describe IMAGE – Open Space (besides bookstore)
Slide 41. Describe IMAGE – Board Room attached.
While the OFU exhibit was a huge success at the ROM, the curatorial team addressed feedback from the ROM experience:
1. OFU as public history was accessible to the public that could afford to pay the admission fee to the ROM. In Vancouver, the exhibit was held at the UBC campus in downtown Vancouver. At the centre of the Paraolympic activities. No admission fee
2. Making the exhibit itself more accessible was an on-going priority which required funding, creativity and patience. This was done by:
Enlarging the number of the touch stations of physical objects represented in the exhibits and giving people greater access to them.
At the ROM, Touch stations were sometimes locked away unless people asked for them….so that was a difficulty. In Vancouver the board room was our command centre but also where the touch station objects could be on display throughout the Games.
Slide 42. Describe IMAGE – Touch station in boardroom.
We had many people. Especially school groups come through and touch, use and asked questions about the objects. For some people, the objects evoked their own stories they were willing to share.
Slide 43. Describe IMAGE – Access – Braille Description
Braille description of touch station objects and about the installation itself were included on table signs besides the objects.
Slide 44. Describe IMAGE – Trailblazing – Kim Wrigley –Archer touch station
In 1998, Kim Wrigley-Archer found herself sitting next to a woman named Joan Mactavish at a board meeting of an apartment building for adults who were deaf and blind. In the course of conversation, Kim discovered that Joan had been a long-time interpreter/guide to a third woman – Mae Sophia Brown. In fact, Joan had written a book about Mae, celebrating among other things, the fact that Mae Brown was the first Deaf-Blind Canadian to earn a university degree: a Bachelor of Arts from the University of Toronto in 1972. Kim arrived for class bearing Mae’s watch – an object that Joan Mactavish loaned to her for the exhibit. As a woman who has herself acquired the dual disability of hearing and vision loss, Kim was deeply moved: by the trust, by Mae’s Brown’s life, and by the similar experiences of exclusion that she shared with all deaf-blind persons.
Mae’s watch was front and centre in the installation that we titled Trailblazing. We displayed it along with two pictures of Mae Brown herself: one of her using a brailler for her studies, and one that was her graduation photo. We included an actual Brailler, and a copy of Joan Mactavish’s book titled “Bravo, Miss Brown.”
Slide 45. Other Accessibility Features
Includes a reading of all exhibit panel texts, as well as a carefully crafted description of all visual elements. Descriptive texts have been rendered precisely and evocatively, in a way that mirrors the tone and content of each installation ( by Christine Brown- contributors )
Available by using the QR Readers located throughout the exhibit.
The second description was the “play/drama” version. This was done by a young person asking questions (scripted) about each installation and the narrator answering. Those two versions are still available on the website
Full script for the Audio Description and Brief Synopsis available at the Welcome Desk in both large print version and Braille version.
Slide 46. Other Accessbility Features
Contributors on site.
American Sign Language video
A rigorous translation of all exhibit texts into American Sign Language. This video represents a breakthrough in Deaf Cultural content. Interpretation is delivered directly by native ASL speakers, who have worked meticulously to preserve the poetics and nuanced meanings of the exhibit texts.
Available by using the QR Readers located throughout the exhibit, MP3 player or by the viewing the screens located near the entrance.
Slide 47 – Describe image of screen
Slide 48 Final Thought
- Our approach – work inductively with objects, from an activist standpoint to generate a fresh historical account
- This account reveals issues of segregation, forced confinement, unpaid labour by the good intentions of charitable benefactors.
- It also includes important individual achievements as well as the growth of national disability movements.
- OFU – It does not claim to be comprehensive, its intent, Invitational
- Invite others to uncover disability history as it is everywhere, once you begin to look.
Slide 49 – Thank you!