This was written by graduating student, Kelly Smith.
First I would like to congratulate all of the award winners that are here today. It is a true representation of the hard work and commitment that each of you.r have put into your studies and your work. I would also like to thank the donors for their generous contributions without which we would not be able to recognize the work that students are doing. Thank you!
I would also like to say thank you to the award committee for presenting me with the Nancy C. Sprott Disability Studies Award. When Kathryn contacted me to let me know that I had won the award for excellence in my thesis I was truly surprised and deeply honoured. I almost felt like it wasn’t really fair since I had such a great time working on my thesis. Not that it wasn’t a lot of work, which it was, and it was certainly stressful at times but I really enjoyed the process as a whole.
I was also very honoured to have been asked to give the Student Response speech today. It has meant a lot to me. Thank you again.
A little about me:
I was first accepted into the Disability Studies program here at Ryerson in 2002. I had been scheduled to start in the fall but lost my job during the summer months and had to withdraw from the program at that time. While my living circumstances changed, I always knew that I wanted to complete the Disability Studies program. So, fast forward to July 2013 and I finally, after many years, got the chance to start the program!
When I started DST 501 with Kirsty Liddiard, I came into the class feeling as if I had a pretty good foundation to start from. My experience in the field of Disability had started at age 12 when I began working with a running coach at Variety Village. At a young age I was exposed to an environment where I could ask questions and experienced so much diversity that it just became a natural part of life for me. I started working at summer camps with Variety Village when I was 16yrs old and at that time I was also training with a coach who was a paraplegic and the other athletes that he coached were all wheelchair racers. I continued working recreation programs for kid with disabilities through Toronto Parks and Rec (as it was called back then) in evening and summer programs for many years. I graduated from the DSW program at Centennial College in 1995 and up until the time that I stepped back into the classroom for DST 501, I worked many different jobs within the Disability field…from working in group homes and supportive living environments, teaching life skills at Bloorview MacMillan Centre (again dating myself), providing behaviour management training to people with acquired brain injuries, managing an Employment program for people with disabilities, as well working as a Sign Language Facilitator with the Toronto District School Board. With my background and experience I wondered just what new things this program would or could teach me.
Well, it taught me a lot and there’s still so much for me to learn. I remember having my world shattered to some extent in that first class, having things that I had learned and believed in thrown on its ear. One example is the use of “people first” language. For as long as I can remember it was something that I had always done and taught others to do as well, so to learn in that first class that it was not always supported….well, it really shook things up and made me second guess all that I thought that I knew.
I was one of those people who took a long time to really assimilate what I was learning in my classes. Logically I knew the answers to the questions and how to respond to my instructors but it took me a long time to be able to really understand, internalize and to formulate my own thoughts and understandings that were in line with the program, so if you’re a new student or even have been in the program for sometime and haven’t reached that point yet, don’t worry, keep working and critically questioning the information that you learn and it will come.
As a recent graduate I have some advice to offer to new students.
The first is that it is really important to keep yourself organized and disciplined with the classes…and I say this as someone who was at times taking 3 courses and working full time. I don’t really recommend that though! Treat your online courses like a job. Schedule the days that you will complete your readings, go online and post your responses and complete assignments into your week. It’s much easier to develop a schedule that can be flexible, rather than leaving everything to the last minute or not having a plan at all. I actually used to take the TTC to work instead of driving to give myself 45min in the morning and 45mins in the evening each day to complete my reading….and I might have fallen asleep at times but….I did try!
Secondly, I highly recommend taking some courses from other departments when possible for your electives. There are a few reasons that I say this. One reason is that people are made up of many different parts, and for those of you who have gotten this far, it’s what we refer to as intersectionality. People are never just read by one part of themselves, such as their age, culture, sex, economic status or disability but instead are read at different times by their different intersections together. Taking courses from other departments help us to learn about different aspects of people. For example, I took Sociology of Food and Eating and in it I learned how a person’s socioeconomic status can affect their access to foods not only through cost but also through the area that they live in which might be a food desert and food swamp. This is something that I had never thought of before and would certainly impact many of the people that I work with. I found that there was some unexpected cross-over in what would seem like unlikely places as well. For example, in Geography of Recreation and Leisure I saw how the “rupture” had taken place and influenced research in Geography just after I had learned about how it had affected the field of Disability studies in DST 88.
Some classes can also offer insight into how society works. For example, in Pop Culture I learned about the power that the media plays in social construct and used ideas from this class as well as Eliza’s class as a jumping off point for my thesis.
Another reason is that in taking these courses we become, as Paulo Freire suggests, co-creators in our education. We have the chance to share the information that we learn in our core courses with other student’ and instructors from different departments. As we learn from them, they are learning from us at the same time but it also gives us the opportunity to learn how to share our learnings with others who don’t have a Disability Studies background. I found that after taking a few classes, and many of you may have experienced the same things, that I would want to come home and share this new way of thinking that I was learning with my friends, family or co-workers, only to be surprised that they didn’t agree, didn’t understand or at times even become defensive about what I was saying. I had some good conversations about this with my mum while working on my thesis and I found that it this because in our program we use specific word and phrasing and are taught to critically think about things in different ways than we did when we first came into the program. So while we can hold conversations with those who have taken or who teach the classes, we sometimes struggle with how to put our new perspectives into different words. I think that taking a range of classes from various departments can help us to learn how to have these conversations and say the same the things that we need to but to do it in ways that invite conversation and understanding. This is an important skill to have when going back to our communities and workplaces with new ideas and philosophies that we learn over the course of our program.
Finally, I would just like to say that the instructors and other staff in our program are truly amazing. They come from diverse backgrounds and are great resources and a wealth of information and are willing to help whenever they can. We are truly lucky to have them in our department! On behalf of the graduating class, I would like to thank them for the help, support and commitment to us throughout our time in the program. Without you, we would not be able to reach the heights that we have.
To end, I would like to say to all students: throughout the rest of your time in the program I urge you to ask questions, critically examine with passion, create your vision and take action!
Congratulations to the class of 2016!
To watch the archived live stream of convocation please go to RyeCast videos.
This post was written by graduating student Amanda Ackerman.
Hello. My name is Amanda. For my DST 99 paper I chose to go out of my comfort zone and research a topic that has not had much attention, but one that looks at a specific service that is offered to all people both in their homes and in their work places.
The focus to my research was to inquire about accessibility in the alarm industry. This research was completed through a qualitative ethnographic study. It was based on field work including interviews, a questionnaire, literature review and object analysis. My literature review included topics such as the social model, universal design, adaptive technology, home automation and the alarm industry.
I based my research on the following question: Does the alarm industry have alternative adapted equipment and or devices to provide equal security through alarms to all people in society?
I wanted to learn more about the inside workings of the alarm industry. Like who benefits from alarms, how to go about getting one, what is offered and who it is offered to? Does the alarm industry provide inclusion for all people or are there groups of people missing within the industry? Is the alarm industry designing devices and equipment based on universal design? In this paper while looking through a social model lens, I explore these burning questions and issues to determine if the alarm industry has built its services to provide equitable services to all people in society.
I unpacked this through interviewing people who have disabilities, family members of people who have a disability and individuals who work with people who have a disability to gain access of first hand knowledge, experiences and stories surrounding the alarm industry and the services it provides. I also spoke with individuals in the alarm industry, taking concerns to them and seeing when and if the alarm industry is able to provide more inclusive equipment. Upon my completion, I found that the alarm industry provides equipment to some groups of people with disabilities but not all.
There were many different responses I received from individuals I spoke with. For example some barriers include the in/ability to arm or disarm their alarm either from the alarm panel or from the key fob. Some respondents highlighted difficulty communicating through the use of the alarm panel as it is not effective for all people and the in/ability to control the smoke detector when it has a false alarm. Although there is some adapted equipment that the alarm industry can provide, it is not sufficient enough to provide full inclusion. For example, someone who has fine motor difficulty and cannot push the button on the panel or use key fob has the option of a touch screen. However, the touch screen is very sensitive and requires one to be accurate, which can be difficult for someone with fine motor difficulty. Although there are iPhones and tablets, not all security systems are equipped to work with them. I learned that the alarm industry does provide safety and security for most people, but basis their services on the average person in society. There is a lot of adapted equipment available but designed for the older population. They do provide some adapted equipment but with a great deal of limitations. Through my contacts in the alarm industry, I feel that continuing to identify and collaborate with the professionals, there is a way to enable a more inclusive service. One that doesn’t separate “us” and “them”.
This post was written by graduating student Kelly Smith.
The idea for my DST99 project came from my mum. On days that I would have dinner with my mum we would chat about our day and watch some T.V. Over time I started noticing some of the shows that she was watching. Little People, Big World, The Little Couple, My 600lb Life to name a few, and I want to be clear that these are not the only shows that my mum watches but these were the shows that would engage my attention critically whenever I saw them.
Around this time, I took several classes that also made me look critically at these shows and I started feeling like TLC (the channel) had their very own Modern Day Freak Show.
I know many people watch these shows which makes me wonder 2 things: why people watch this shows and what it is that they get out of it? As the scope of this question was far too large I decided to use the question “How do these shows clarify disability”?
To start I chose to focus on 3 shows mainly: Little People, Big World, The Little Couple, and My 600lb life. I used the term “little people” as this is the term that the people on the shows that I watched used to refer to themselves and their families. I am used the term “fat” when speaking about the people on the show My 600 lb Life and Skin Tight because that is the term used in the Fat Acceptance Movement.
Some of the most interesting parts of my research came from the informal conversations that I had with my mum. When I first explained what my project was going to be about, I remember my mum saying, “you know, until you mentioned it I never thought about the people as having a disability before.” That surprised me as I had thought that would be the point for people to watch to see.
What I discovered through this exchange was, that although shows like Little People, Big World do show the people on the shows in very normative ways, in doing so there is a danger that people will no longer see the systemic issues which people with disabilities do face, and while we definitely want to see people with disabilities in roles that they aren’t typically seen in on television, when we only show representations which are hegemonic and perpetuate neo-liberalist ideology, that says that anyone can rise from nothing to achieve great wealth through hard work and determination.
Instead we should be showing different lived experiences to dismantle this idea of “normal” and create a place where difference is valued and where people are shown with all of their intersections.
Another interesting conversation we had was around the show Skin Tight. One week my mum told me that there was a new show called Skin Tight that was about people who had lost large amounts of weight and as a result wanted to have surgery to remove the excess skin. I asked why she didn’t like watching that show and she told me that it was because when she watched it she felt like she was watching something that she shouldn’t be. We had further conversations like this and didn’t come up with a definitive answer but thought it was interesting that when someone weighed 600lbs they almost become objectified and un-human as we see them naked and by somehow losing the weight their humanity is returned to them so we aren’t comfortable seeing them in their “less than perfect” state.
I also found that the framing of these two types of shows were vastly different. On the one hand, the shows about little people were very positive, disability was mainly only shown incidentally. The same family was followed each week so viewers get to learn a little more about the individuals.
In my 600 lb life, however, embodied difference was the only topic of each show, there was a new person featured each week, and the entire show was very medically focused. Each week the show started with a new person shown naked with their private areas only covered with folds of their skin….for some reason that I cannot really understand except to allow the viewer to see all of their fatness.
The framing theory would say that media frames people who are fat in such a way because they are seen as being culpable for their stigma (Backstrom, 2012). Because it is acquired, fatness is seen as being within the control of an individual. Programs such as this one perpetuates and legitimizes already held beliefs to reinforce social reality for many people.
One last insight that I would like to share is around the Para-social Contact Theory. This hypothesis relates to the idea that through repeated ‘interaction’, people may feel that they come to know the individuals on the shows that they watch, much in the same way that we may feel that we know the ‘Kardashians’ or the President of the United States although we have never personally met them. Schiappa et al (2005) believes that this contact can lead to reducing prejudice, especially if the audience have not had much interaction with the minority group members
I was surprised that in the end I do feel that there is some value to these types of reality shows but that we must be cautious. I feel that we must be cognisant and show a range of stories so that people can join their voices together and be heard because disability does not occur in isolation and instead is always read with all of its intersections such as race, age, gender and sexual orientation.
Representations should be different. They do not need to be normalized, but they do need be authentic in their telling and it should be those who own the stories that tell them in the way that they want them to be told.
This post is written by alumni, Cherish Picklyk.
I wanted to open up a discourse on the representation of special need students in South Korean schools. As a foreign language teacher, I noticed in the professional trainings and interactions with my colleagues, little was mentioned to me about working in our English classrooms with special needs. The absence of any discussion about special needs students made me wonder why.
Specifically, the English Program in Korea (E.P.I.K) affiliated with Korea Ministry of Education hires native English speakers to develop English speaking abilities and the cultural exchange between Korea and abroad. However, there is no mention of integrating students with special needs into the English classroom under the teaching guidelines section on their website.
Furthermore, as I continued to build connections with other English teachers, I heard the common theme of special education being an ambiguous, obscure subject. In particular, we were not all on the same page in our expectations for inclusive teaching practice, creating modified lesson plans, and using accommodations.
I had to find out more.
(“It is a form of qualitative research that involves the gathering of narratives—written, oral, visual—focusing on the meanings that people ascribe to their experiences, seeking to provide “insight that (befits) the complexity of human lives” (JOSSELSON, 2006, p.4).)
One sunny day in France, I sent out surveys to seven foreign language teachers in South Korea. I wanted to gather some experiences and frame this information in a narrative inquiry paradigm.
Three Men and Four Women aged 23-45, were interviewed about their knowledge of special education in their workplace setting in schools. These experiences from teachers are from diversified backgrounds who have been teaching in Korea from a span of one year to eight years. Most importantly, all teachers that participated in this survey are working within various cohorts of classrooms: private and public, and rural and urban settings across South Korea.
Let’s hear what they had to say.
What About Special Needs Students?
I was wondering about your opinion as a school teacher in South Korea. In your school, what learning structures are put in place for students with special needs: including behavioural, learning, or physical challenges? How are these children being integrated into English classes academically and socially?
Are they equally participating in the classroom?
Do teachers or parents show shame or pity in discussing children with special needs?
Any other thoughts?
Meet the Teachers
Keith – 8 years working as a foreign language teacher across South Korea, currently in a private academy in metropolitan city, Seoul
“I have seen and also been told how kids with special needs are treated in the classroom. They are usually included in the classroom with kids their age, but they do not always get the attention or help they deserve.
I feel that teachers in the classroom are not given the tools to assist these special students to succeed and flourish. Classroom teachers have deadlines to meet and cannot provide what these students need. Therefore, they become sort of babysitters for these students and sometimes have other students looking after them when they (teachers) are occupied.
In my years of teaching in Korea, I have had these types of students in my classrooms and have heard horror stories about how they lived at home and see their behaviour at school. But, I feel that when they come to school it is kind of a safe haven for them and makes them feel like a normal child when they mix with other kids. It probably takes them away from what negativity they encounter at home (physical, and/or verbal, neglect, malnourished, and so forth).”
“In regards, to children with special needs they are not challenged at all in my English classroom to learn. They are actually ignored and I am encouraged to ignore them by my Korean co-teacher. I was told to focus on the ‘normal’ children because they are seen as more capable of learning. The are also bullied in the classroom and the Korean co-teacher ignores the bullying.
I’ve never personally interacted with a parent of a student with a disability, but my Korean co-teacher showed pity, not shame. As time progressed I showed these students more attention and began to change my lessons and teach them separately when I got the chance; as well as, pairing them with a stronger student in the classroom who can translate or help them personally as the lessons progressed. I also gave them different work tailored to their learning needs to better enhance their learning as well as their understanding of English.
There’s my experience in a nutshell!”
“I am sorry but I don’t have any input. I have never come across any students with special needs.”
“I have special needs in all three of my schools. In middle and high school, they are treated wonderfully. They have a teacher who is trained for special needs and their own fully decked out rooms. They do most of classes with the other students and then have review classes. Even things like cooking and basic finance, general life skill classes too.
I see that the other students are really nice to them in class, no one is rude or talking down to them. But, who knows what happens outside of class though but to me everyone gets along. Teachers are all really nice to them although the special needs students are super quiet in class, not sure if it is because they or shy or what? Even when I put in extra effort to encourage them to participate they are usually very low level or shy about their skills.
There was one student in my middle school who had a hard time speaking Korean which was affecting all of her classes obviously since teachers could barely understand her. The school paid for a speech specialist for a few months and her speaking ability in Korean and English is ten times better now. It must have been expensive to have a specialist come in for one student but they took great care of her and she is much happier and well behaved now.
In my elementary school there is no special needs teacher. My elementary school only has about 50 students and maybe 2 or 3 special needs kids so they are just in class like everyone else. This means they are way behind and the teachers just don’t have enough time to teach the class and give the time to the students to keep up. The teachers are usually frustrated with the students because they get bored and have behaviour problems.
Overall, I am really happy with the middle and high school treatment and set up. But kind of disappointed with the elementary support. I know the school is on a small budget and likely can’t afford a teacher and room for 2 or 3 students. I would like to see what it is like at a larger elementary school with more funds.”
“Well, I don’t know much, but I do know that we have a special needs teacher specifically who works with them in a pull out setting. My classes are levelled and the bottom 25% don’t take classes with me, which I think most of them fall into this category.
A couple special needs students have been recently integrated into my classes. I don’t see them often, but there was one particular student who has a bunch of pencils and just plays with them all throughout class.
So, I asked the teacher about it. He told me to engage with him and to try and get him to do whole group responses. And encouraged me to push him and “not leave him alone.” And then the next week he addressed the faculty saying this same thing. I thought that was really good and pretty progressive for Korea. Except, to not expect accommodations.”
“I think students with special needs or behavioural challenges aren’t properly acknowledged. They were usually in low level English classes and not given the adequate attention to get ahead. I feel if my co-teacher facilitated more care to them they could advance, but instead she ignores their issues. I feel that there is only so much that I can do. I call on them for answers, play games, and doing more active activities. After a while the games become to rowdy so my co-teacher got upset and cancelled them. We then returned to rudimentary work.
I don’t feel that my co-teacher shamed or pity them. She just didn’t motivate them or care to teach. I heard that she is quitting so we will see if improvements come. I never interacted with parents so I cannot comment on that.
“I think it depends on the school and especially with the teachers. Like for Danseong working with one teacher, she neglects and ignores on of the special needs students. Upon asking her why she replied: ‘He’s not capable of learning English and doesn’t have the knowledge.’
I was literally SHOCKED because back home in Canada we are taught that every student is equal and should be treated the same. So, because it is her classroom, I don’t want to cause any trouble so I just let things be. Sometimes, I do try to work with the students one on one. But it’s hard enough when he has a learning disability, let alone trying to communicate with him in another language he has no idea.
But then in my second school……. I see my co-teacher treating two students with learning disabilities just the same as students, giving extra time from the teacher. For example, when students are asked to read a word, I would whisper in the student’s ear and he/she would read it out loud versus other students we would push them to figure it out themselves.
Also, for the school festivals, there is one student in a wheelchair and the school included that student in the play, even though it was only for 2 minutes. But it was nice to see the smile on that student’s face being apart of the show.
I don’t really interact with the parents as much, but I think the education system here can do so much better incorporating students with disabilities. I just think that there’s not enough funds delegated into special education.
There You Have It
A few perspectives on the current state of teaching English in Korea, and some of the realities of providing English education to students of all abilities. It should be noted to bear in mind the language barrier between the English and Korean teachers in the schools. It was difficult to communicate and find out further information within our schools directly.
If you have any other thoughts or further information, please comment below.
Thanks for reading.
You can find me, Amanda Teacher, making new friends with neighbourhood cats and dogs, getting lost in foreign countries, swimming in crystal blue waters, or sampling new coffee roasts. As a disability studies alumni, I strive for disability rights in whatever part of the world and work situation I find myself in.
Currently, happily existing in France enjoying baguettes, learning French and finding beauty in everyday things around me.
This post was written by instructor Danielle Landry.
Launching the Final Report
This past December, the Psychiatric Survivor Anti-Violence Coalition (PDAC) hosted a community event in Parkdale to release its final report. The project leads, Peggy-Gail DeHal Guraj from Parkdale Community Legal Services, Lucy Costa from the Empowerment Council and Andrea Daley from York University’s School of Social Work, were on hand to introduce the event. Together they spoke about the significance of the work undertaken by this coalition, how the group first came together following a series of assaults against residents of a Parkdale boarding home in 2011, and the subsequent community response, which aimed to ensure that incidents like these never happened again.
“Why is the media only interested when we’re dead?”
– Lucy Costa, December 10 2015 PDAC Report Launch
Author of the book The Story of Jane Doe: A Book About Rape (2004), activist, educator and litigant Jane Doe (Jane Doe vs. Toronto Police), gave a compelling talk to a room of about 50 keen listeners. She spoke openly about how at the trial to convict her rapist, the cross-examiner sought to discredit her testimony by asking about her mental health history and her interest in reading ‘feminist literature’. The audience was aghast, but not entirely surprised by the experience she recounted.
Creatively designed by Lisa Walter, PDAC’s final report is written in easy to understand non-academic language. At the launch event she spoke about how the anti-violence framework inspired her design. A timeline diagram runs along the bottom of the page, giving readers a sense of significant events that have occurred during the time this coalition has been active. The report’s text uses the metaphor of ‘clearing a path’ to illustrate how we can build on both what psychiatric survivors already collectively know about the violence that permeates their lives and the anti-violence work that has been undertaken to date. Instead of learning about structural violence anew, the coalition sought to ‘clear a path’, to make visible a road that already exists and challenge familiar roadblocks, such as “lack of committed funding, organizational policy constraints and apathy” (p.29). As stated in the report, “psychiatric survivors’ pressing needs — and indeed, their right — to safety and wellness demand that we use novel approaches to break them down.” (p.29)
“Redignified lives. Now that’s a revolution”
– Lisa Walter, December 10 2015 PDAC Report Launch
Working with the Coalition
The organizing members of PDAC share a desire and commitment to address the discrimination, exclusion and violence experienced by people with psychiatric disabilities. In 2011, the originating members reached out to other people with a vested interest in this issue, including community members, professionals, academics and members of government, asking them to bring their knowledge, experience, and resources to the table.
In 2012, I joined the coalition as a volunteer representative of the School of Disability Studies and as someone who is mad-identified. At the time I was working as a Research Assistant to Dr. Kathryn Church and looking to complete a capstone project for the certificate in Advancing the AODA through the Chang School (now known as Accessibility Practices: AODA and Beyond). I was able to put my research for my capstone to use by building a literature review on psychiatric disability and violence. I quickly discovered, as you might imagine, that a lot more has been written about the trope of mad people as violent than work investigating the many forms of violence experienced by mad people. Looking at the literature on structural violence experienced by people with psychiatric disabilities, I noted that there are many conceptual frameworks for understanding violence and disability, such as: human rights, hate crimes, social determinants of health, and more… but the literature on violence written from a psychiatric survivor perspective was harder to find. Unfortunately, community knowledge of this sort frequently goes unpublished or only appears in the ‘grey literature’, which can be harder to track down.
Many of you connected to the School of Disability Studies have likely heard me talk about the work of the coalition at some point over the past few years; I’ve spoken about it to numerous DST 501 classes, presented at CDSA on the findings of my capstone project, and participated in panel at Mad Pride with A History of Madness instructor Jenna Reid. Now years later, I’m excited to share what this coalition has produced.
Using the Anti-Violence Framework
PDAC’s final report documents the coalition’s work over the last 4 years to address the structural violence experienced by people with psychiatric disabilities. Here violence is defined as:
“actions, words, attitudes, structures, or systems that cause physical or psychological harm to a vulnerable individual, or that cause such an individual to be placed in harm’s way (adapted from Fisher, Abdi, Ludin, Smith, Williams, & Williams, 2000). ‘Structural violence’ describes social structures — economic, political, legal, religious, and cultural — that put vulnerable individuals and populations in harm’s way (adapted from Gilligan, J., 1997 and Farmer, P.E., 2004 as cited in Farmer, Nizeye, Stulac, & Keshavjee, 2006). Violence against people with psychiatric disabilities occurs both through intended and unintended acts of violence and omission (Ontario Human Rights Commission [OHRC], 2012).” (Psychiatric Disabilities Anti-Violence Coalition, 2015, p.9)
The report outlines our psychiatric survivor-led research process, the findings from our community consultations in 2014/2015, and the anti-violence framework which sets guidelines to examine, analyze and respond to violence in the community.
The anti-violence framework PDAC has developed can be taken up and applied by different organizations in their own settings. Instead of producing another set of recommendations that could be overlooked or collect dust on a shelf, we’ve developed a framework that’s more of a “how to” than a “what to do”, so service providers and other stakeholder groups have a method to conduct their own psychiatric survivor analysis. I encourage each of you to read the report and consider how it could be taken up in the groups and organizations you belong to.
A copy of the final report “Clearing a Path: A Psychiatric Survivor Anti-Violence Framework” is available for download here: https://torontoantiviolencecoalition.wordpress.com/
This post was written by current students, Amanda Lin, Andrea Tropea and Danielle MacLean.
Anti-Psychiatry movements have been around for decades. The Rosenhan Experiment which began in 1973 initiated a gathering of people who wanted to expose the truths within the medical field of psychiatry. Individuals who identify as anti-psychiatry activists, ex-patient/consumers/survivors and allies collectively question the validity of the Diagnostic and Statistical Manual (DSM), otherwise known as the Bible of psychiatry. Despite the concerns surrounding the application of the DSM, it continues to be embedded into the attitudes and practices surround our academic institutions. Recently, this movement has become centre stage with regards to the settlement of Navi Dhanota vs. York University.
Many people revere this settlement as a celebrated victory within the anti-psychiatry activists, ex-patient/consumers/survivors’ community. After reflecting on this victory it is easy to see that there is still a long road ahead. Academic institutions within Canada, specifically, Ontario, are far from accessible. One of the many ways our educational system continues to be inaccessible is through the use of labels. In order to attain support, often, the first step includes the identification and labelling of students. Otherwise, known as Identification Placement and Review Committees as outlined by The Ontario Ministry of Education. This becomes problematic when vulnerable individuals such as young children, and people with disabilities are forced to accept labels, especially when they have been excluded from the process of labelling themselves.
Labels, their associated stigma and stereotypes can become self-fulfilling prophecies. The future of this “anti-label” movement aims to educate society on the dangers associated with presuming a diagnosis is everything and the gateway to proper supports. Within an accessible education system, the focus could remain on how a disability affects the individual’s learning needs, and not the disability itself. Therefore, if you have the urge to label someone other than yourself, we suggest you find a jar.
This post was written by current student, Heather Norris.
It has been six months since I have returned from India. It was a trip that I never would have imagined taking on my own. As such, I am deeply grateful for the sponsorship, support and encouragement of the professors and various staff members within Ryerson’s University Faculty of Community Services and Ryerson’s International department. As well as all the professors and support staff of Amrita University, who enabled us to have such a privileged and unique experience through their Live-IN-Labs program. I am also very grateful for the timely support provided from members of our group on various occasions throughout our stay.To them, I am greatly indebted. Most importantly, I would like to thank the community members of Komalikudi and all those who worked within the village for giving me the privilege to participate and gain much needed experience, knowledge and wisdom related to international learning. It was a spectacular experience, whose learning will remain with me always.To this end, the following reflections, musings and experiences arose out of the time I spent in the tribal settlement of Komalikudi in the Idukki District of Kerala, located in the south of India.
Although I could share many diverse and sometimes challenging experiences related to this trip,I will limit my attention to two areas that I found to be most compelling to me. Firstly, I will reflect on a few discoveries in relation to the notion of disability and health that arose out of casual conversations I had with the local people living and working within the village of Komalikudi, as well as from dialogue that occurred while attending a homeopathic clinic in the village. It must be made clear that the thoughts related to such discoveries are merely momentary glimpses into what are obviously very complex issues, and as such, deserve a lot more time and attention to unravel than I can provide in this reflection. I mention them here as a way to highlight the diversity of cultural beliefs and ways of being I encountered and their impacts on everyday life in the tribal village. Secondly, I will speak to the creation of the beginnings of a Sacred Grove in the tribal village of Komalikudi. The Sacred Grove initiative arose out of a brainstorming session that we had among all members of our group, including MSW students who were provided to us by Amrita University as interpreters for our group while we were living and working in the village. For me, these students were a vital link to being able to connect with the local peoples in a culturally appropriate manner and were key to establishing culturally appropriate initiatives, such as the establishment of Sacred Groves, a tradition, that has been said to be “as old as Kerala itself” (http://www.amritapuri.org/activity/nature/groves).
One conviction that I have always believed in and one that has been further reinforced during this trip is that the Global South is not the Global North, nor should it necessarily be expected to embrace the ideologies of the Global North or otherwise be exploited by them. Similarly, the genesis, and notions of impairment and disability and disabled peoples struggles in the Global South are in stark contrast to the genesis and notions of impairment and disability in the Global North put forth by the disability rights movement. In the Global North, within the disability rights movement, the notion of disability is often portrayed as something to be proud of, respected and sacred to our humanity and rightly so. Disabled individuals in the Global North focus their energies on advocacy for; obtaining appropriate and accessible education and housing, the right to equal wages and the striving for recognition of disabled people’s valued citizenship within North American society, all of which are very valued concerns to disabled and non-disabled peoples lives all over the world. In the Global South,where impairment and disability can be a direct result of severe socio-economic impoverishment and where disabled women have limited recognition and voice,such basic rights of citizenship are often hidden or merely neglected. Disabled peoples struggles in the Global South are related to more basic concerns of daily survival on many fronts.For example, I was told that among the tribal peoples of the village, disability is often seen as something that is shameful and thus, disabled individuals are often hidden from sight.Disabled women and young girls, once they reach young adulthood or their parents are no longer able to care for them, are often moved from their home and family within the village to institutions in the cities. The reasons for this are many and complex. Lack of appropriate support services is an issue of course, particularly in regard to the logistical issues around accessing the village.Mostly, though, I was told that if disabled women were to continue to live in the village, they would be openly vulnerable to physical and sexual abuse. Disabled men are not so likely to be institutionalized in this manner.
Conformity to the “norm” is highly respected within the tribal village and thus shapes the kind of interventions sought after among disabled people and their significant others. For example,many parents resist putting their deaf children into sign language classes as this would draw more attention to their differences. At all cost, they want their children to appear “normal”. One of the reasons for this striving towards conformity, I was told was because differences outside the community are not very well tolerated. The tribal peoples themselves are seen by members outside their community as not worthy to know and often assumed not to be capable of learning. Such sentiments are not dissimilar to indigenous peoples in North America, albeit this may be slowly changing. It does beg the question however about whether colonialism, historically so deeply embedded in India as in North America, has not impacted indigenous understandings of impairment and disability over generations in India?
Accessible housing is extremely limited in the village if non-existent. I, along with the other members of our group were invited to attend a communal gathering lead by prominent officials, elected leaders of the community and a Hindu religious leader. They came together to choose who in the village would be receiving new homes, to negotiate a price and to hire the men to build them. As well, discussion revolved around where to establish the sacred grove, an initiative put forth by our group and accepted with much enthusiasm. Gender roles were strictly enforced in this community. For example, during this gathering,the men sat on one side of the room while the women on the other. The Elders(men) made the final decisions,even though women did share their thoughts/suggestions. Making their homes accessible for the elderly and disabled individuals was not part of their housing design.
I also was invited to attend a homoeopathic clinic that was held in the school house in the village. A physician was in attendance assisted by the village’s school teacher, who was also a member of the community. I came to realize over the course of my stay, that she was integral to providing support and assistance for the communities well-being that went far beyond her duties as a school teacher. I found the structure of the clinic very captivating in that it reflected a very communal way of life. Privacy, a cherished notion in North America did not seem to be a primary concern in the minds of the community members, perhaps because the communities infrastructure did not lend itself well to maintaining any element of privacy with respect to these clinics. It seemed everyone from the community was in attendance, including not only the client, but their families, relatives, husbands and wives. One of the most common ailments expressed, particularly among women, were sore knees, shoulders and backs, the majority of which resulted from the hard labour of working in the tea fields all day long. The ages of the women varied from young mothers with these complaints to older women and the elderly. Skin ailments was another complaint found among a number of villagers irrespective of age. As well the physician mentioned that community members diagnosed with hypertension were unable to be treated since there was no medication available in the village nor the appropriate equipment such as a sphygmomanometer. The physician expressed to me that his medical approach is to treat the whole person, his/her whole constitution, in this way the medicine works in synergy with each other to alleviate specific symptoms. For more serious health concern the villagers were taken to the hospital in the town.
The Sacred Grove Initiative
The Sacred Grove Initiative and its underlying philosophy of developing respect for Mother Nature was our inspiration that informed and built the foundation upon which we developed the various activities and programs that were carried out within the village of Komalikudi. For example in the area of health awareness and teachings related to alcohol and substance abuse the nurturing care required for the four sacred tress to flourish with the aid of clean water, air, sun, and healthy fertile soil is not dissimilar to what we as human beings require in order to be healthy whole compassionate human beings.
The establishment of Sacred Groves or Kavus as they are known in India, is an ancient tradition that has existed in various configurations the world over. They are sacred places that demand a deep respect for the protection of diverse ecosystems that help sustain all of our lives on this planet. The tradition of the sacred grove helps us reconnect with Nature, protect our environment and nurture ourselves as human beings. Not only does the presence and teachings of a sacred grove bring an awareness of the interconnectedness of nature with humanity it also provides a safe place for those seeking to establish a sense of rejuvenation in their lives. The GreenFriends program for the protection and propagation of kavus in Kerala contends that ” …kavus not only are a means for people to worship Nature as a manifestation of the Divine, but also a means to protect biological resources, to provide sanctuaries for flora and fauna (especially ayurvedic herbs), to provide oxygen to surrounding area and to provide deep groundwater reserves” ( http://www.amritapuri.org/activity/nature/groves).
Chancellor Amma, a highly revered and respected humanitarian and spiritual teacher around the world has said that “we should all feel an obligation to Mother Earth. If we forget our obligation to Mother Earth, it is equal to forgetting our own selves.” By developing the beginnings of a “sacred grove” through the planting of four trees considered to be sacred among the village peoples of Komalikudi, we felt, as a group that we could contribute to Chancellor’s Amma’s own desires for the establishment of these sacred groves all over India. Further, and perhaps most importantly, through the powerful ancient teachings around the spiritual, medicinal and protective properties of the sacred trees we felt we could help foster a healthy and deep respect not only for the land and our interconnectedness with Mother Earth, but also towards ourselves and other human beings as well. We felt that by developing an awareness of these ancient teachings among school children and respect for this sacred place through ongoing care, this initiative could contribute to increasing self-esteem and a love for nature over their lifetimes.
To realize that we all share the need for the health and well-being of Mother Earth and likewise for ourselves, and that such requirements, are essential for sustaining ourselves, our children and their future generations to come, may help us to move towards a more collectively cohesive, healthy and yet diverse communities of peoples around the world. It is in this manner of collaboration and sharing through nature, that I feel the diversity of our human existence can not only be more easily acknowledged but accepted and valued in all of our lives.
This post was written by Jijian Voronka who teaches at the School of Disability Studies and is a SSHRC Postdoctoral Research Fellow in the Dept. of Women’s and Gender Studies at Rutgers University.
In Ontario, the participation of disabled people as ‘experts by experience’ in health, education, and social service systems is growing, and the advocacy work that we do as faculty, staff, students, and alumni at the School of Disability Studies has helped make inclusion a ‘best practice.’ For the last several years, I have greatly benefitted from the implementation of community-based inclusionary practices. I can now use my usually denigrated experiences of homelessness and psychiatric disability as entry points into systems that previously were built on our exclusion. This involves working and offering service to a broad range of academic, community mental health, and social service sectors.
Yet, I am also a researcher. And as the culmination of inclusionary opportunities continued to grow, I became curious as to just how the inclusion of people with psychiatric disabilities was organizing. From 2009-2015 I worked for the Mental Health Commission of Canada as a consumer research consultant: in this role, I was to explicitly draw on both my academic training and my lived experiences of homelessness and distress to inform my work. Drawing on lived experience in work roles is now called ‘peer work.’ For me, doing peer work included promoting peer inclusion, supporting fellow peer workers, and building and consulting on research, reports, policy, and procedures.
Most significantly, this work was done for the At Home/Chez Soi project (2009-2013), a $110 million national research demonstration project studying how to best house the ‘chronically homeless mentally ill.’ Here, I helped implement and support peer workers in 5 cities across Canada in a broad range of roles: as peer researchers, as peer support workers, as peer organizers, facilitators, consultants and more. Thanks to substantive project investments, over 100 roles for peer workers developed throughout the course of the project, and I established a National Consumer Panel and Peer Research Group to bring us together to work on a national scale.
I also used this site as a case study for my PhD research. This project offered the opportunity to explore inclusion as a technology of rule: how inclusion is organized, managed, contingent, and what changes it brings to workplaces [for this study, worksites included universities, community mental health teams, housing and homeless services, and a wide range of community organizations]. More importantly, I wanted to learn how other peer workers experience inclusion: what does it mean to do peer work? What is it like to have to work from this identity every day? How do we manage our character, comportment, and self-presentation so that we are recognized as ‘peers’? What are we asked to do in our work? Where is our work understood as useful; and where is our work understood as useless? Drawing from knowledge that you learn in DST 88, I used qualitative mixed methods to explore peer inclusion in practice: a four-year ethnography drawing on participant observation, autoethnography, institutional ethnography, critical discourse analysis and in-depth interviews with other peer workers. I used Disability, Mad, and other Critical Studies to inform the study.
What my research shows is that inclusion is a tenuous business. It can be difficult work for peers to embody and endure. This does not mean that inclusion shouldn’t occur. What it does mean is that we have to map just how inclusion unfolds for disabled people when we are suddenly brought in to work for systems that have long been sites of systemic discrimination. We have to map to begin to be able to imagine how to do better, differently, otherwise.
There are clear terms of engagement that govern peer inclusion, including that we have to actively try to manage our madness. We must be ‘authentic’ enough to represent the ‘homeless mentally ill,’ yet simultaneously respectable enough to sustain employment in professional settings. Further, the direction of our work is oriented in very specific ways. Peer work is recognized and celebrated most when we undertake what has been termed ‘affective labour:’ the often gendered economy of care that supports endangered peoples. This means sharing our stories, inspiring others, and helping those who are going through similar experiences. Yet, when we try to critique or change the conceptual frames that govern us — for example, the policies, professional procedures, discourses, and structures that are actually producing and sustaining our marginality — our work is ignored, blocked, or gets us into trouble.
Further, peer work presents a paradox in labour relations. While peer work offers clear benefits to those of us who are usually excluded from workforces, peer work remains a form of precarious labour that contributes to the deskilling and fragmentation of the unionized health and community service workforce. Most often, peer work is paid less than other professions, and is carried out by people who are marginal not only by virtue of their status as disabled or formerly homeless, but also by virtue of their position in terms of gender, race, class, sexuality, culture and more. Thus, the use of peers in health and social policy delivery is not simply a matter of inclusion, but it also entails a shift towards low-paid often non-unionized labour and is thus part of a complex political economy of care work. Our inclusion changes things: it both benefits us, and creates new complex problems. It also benefits neoliberal austerity strategies and alters the landscape of how labour is organized in health and social service system settings.
In short, our ‘inclusion’ needs to not only be premised on helping to support those made marginal, but also orient towards dismantling the systems of oppression that create and sustain our subordination. Our work as disability activists and advocates is to continue to keep an eye on inclusionary practices, and how they can at once improve, change, and sustain our position as subjugated peoples as we intersect, resist, and incorporate into governing ruling relations.