Living a good life with a disability

This post was written by current student Paul Benson.

neon lights read "good life" against a brick wall
Image from the Hamilton Spectator https://www.thespec.com/living-story/7419430-the-only-three-things-you-need-to-live-a-good-life/

The title of this blog might surprise you. You may think to yourself “disabled people have a much more limited life than the non-disabled.” You might think that I mean “Living the best life possible despite having a disability.” Not at all!

I am going to suggest that life with a disability can be BETTER than a non-disabled life. If you have trouble believing that, just read on.

My reflections on this topic are inspired by my current work in DST 507 – Disability Justice and the Good Human Life – with my professor Dr. Cameron Crawford, and a lively and engaged group of classmates.

To set the context, I have late stage Multiple Sclerosis and live as a long-term patient in my local hospital. And my life is abundantly rich and fulfilling. For example, even though I use  wheelchair and am reliant on a ventilator, I am joining friends this Friday to see the ballet “Sleeping Beauty” at the Burlington Performing Arts Centre. I will be taking a support person with me – a Registered Practical Nurse trained in ventilator care – and meeting up with three close friends who I enjoy spending time with.

With appropriate supports, I can travel out to activities with friends and family. I am cared for by an experienced and capable team of professionals – nurses, my doctor, a physiotherapist, a team of respiratory therapists, a speech therapist, a social worker, and many others. I have a “staff” almost as big as Martha Stewart’s!

And I have time – time to socialize, time to do schoolwork, time to value just being with people. I don’t have to clean house, I don’t have to go out to work (my work is here at my computer). Are you beginning to envy me? Even just a little?

My disability allows me to have the life that I choose. I am autonomous – I make all my own decisions, set myself life goals, and work towards them. The only difference is that I lead a totally interdependent life. Others act as my “arms and legs.” With their help, there is very little that I can‘t do.

But, am I unusual? An anomaly within the disabled community? As I discovered through my readings in DST 507, my experience of life with a disability may be quite common.  Disabled people s often say that they could not imagine a life without their condition. It just would not be as good, it would not be them.

Stephen Hawking celebrated the fact that having a disability gave him the life that he loved. Michel Petrucciani – arguably one of the finest jazz pianists in the world – had Osteogenesis Imperfecta (the “brittle bone” disease). He said that his disease “saved him from being ordinary.” For an example of his playing and composition skills, watch him perform “Cantabile”.  He is obviously delighted to be doing something he loved.

There is an influential bioethicist and intellectual thinker – Dr. Peter Singer – at Princeton University, who insists that a year in the life of a quadriplegic is only worth six months of “normal” life. According to most disabled persons  (including me), this is baloney. Yet he continues to push this philosophy as the basis for restricting healthcare to disabled persons and advocating infanticide for certain disabled babies. In September 2015, in an article in the Toronto Star, Peter Kavanagh wrote “If you are an animal, Peter Singer might be the closest thing you have to Moses. If you are a severely disabled human baby — or a disability activist — he’s more akin to the Angel of Death.”

In 2001, Dr. Singer met and debated with Harriet McBryde Johnson – a Disability Rights lawyer who herself had a disability. Although he talked to her as a valued colleague, he could not believe her when she said that she led a very good life. I would characterize his reaction as “denial.” Her ideas conflicted with his, so he could not accept them.

As part of DST 507, I read a wonderful article by Tom Koch “The Difference that Difference Makes.” This article is available through the Ryerson University library. It points out that many people facing increasing levels of disability find that life actually becomes better. Their increasing disability means that they engage more with their caregivers, their family, and their community. This is the power of interdependence. It happened for me – and I love it!

So, next time you encounter someone with a visible or invisible disability, rather than thinking “Oh that poor person. How they must be suffering,” take time to connect with them. Find out how they view the life they are leading You may discover that they are enjoying a fulfilling life that you would be happy to share. Food for thought!

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Disability in the news

This post was written by current student Jeanette Korosi for the course, DST 502 Disability and the State.

photograph of hands typing on laptop with paper and pencil nearby

 

The Globe News article, Ontario government to increase mercury disability payments to affected First Nations, demonstrates an intersection between disability and Indigenous identity.  In summary, the people in Grassy Narrows and Wabaseemoong experience disability due to toxin dumping and the government of Ontario is ensuring “people who receive mercury disability payments are properly compensated” through funding (Ontario Government, 2018, para. 1).  This article relates to DST 502: Disability and the State in two main ways; colonialism and neoliberalism.

Firstly, like the experiences of Indigenous people after the closures of residential schools described by King (2013), the people in this article are poorly compensated for the violence committed against their health based on the need to increase disability payments.  In his book, King (2013) discusses apologies and the promise of amendment that needs to follow. King (2013) closes by noting that while an apology was given for the abuse in residential schools, former Canadian Prime Minister, Stephen Harper neglected to acknowledge other forms of violence against Indigenous people by the Canadian government.  In some ways, this commitment to funding could act as acknowledgement of violence and financial amendment for the toxic dumping.

Secondly, Harvey (2007) asserts that neoliberalism favours production and values the individuals that contribute to this production.  In Grassy Narrows, the production from the papermill was valued higher than the health and economic contributions of Grassy Narrows and Wabaseemoong as the dumping destroyed their fishery.  This leaves the communities without this specific means to contribute to the economy (Ontario Government, 2018).

Lastly, this article raises several questions.  Is the funding provided enough to meet the requested needs of the communities given the resulting disabilities?  Is more than financial amendment needed? Are services needed? Many of the services used by disabled people are feminized services and therefore, of low priority (Braedley, 2012).  Next, who benefits from this funding? Residential schools were designed in the hopes that Indigenous people would “become contributing members of white North America” (King, 2013, p. 104).  Therefore, is this funding provided in the hopes that Indigenous people will spend it to the benefit of white North America? While this commitment from the provincial government seems to be a step towards amendment, it also generates questions that require critical thinking about colonization and neoliberalism.

References

Braedley, S. (2012). The masculinization effect: neoliberalism, the medical paradigm and Ontario’s health care policy. Canadian Women’s Studies, 29(3), 71-83.

Harvey, D (2007). Chapter 3: The neoliberal state, A brief history of neoliberalism. Oxford University Press.

King, T. (2013). “We are sorry”, The inconvenient Indian. Toronto: Anchor Canada.

Ontario government to increase mercury disability payments to affected First Nations. (2018, September 28). Global News. Retrieved from https://globalnews.ca/news/4498956/ontario-government-to-increase-mercury-disability-payments-to-affected-first-nations/

 

Long-Term Care IS Institutional Care: how we can turn this around? (Part 2)

This post was written by current student Paul Benson.

word cloud
Long Term Care Word Cloud on White Background

This article is a continuation from my earlier post “Long-term care in Ontario – failing to provide an adequate quality of life for adults with disabilities” in which I described how chronic under funding and under staffing is denying residents in long-term care in Ontario care appropriate to their needs.
Currently living in a long-term care home is the only game in town for disabled adults who cannot get sufficient care in a home environment. In my opinion, long-term care is a failing system which provides poor quality of life for residents.

Long-term care is “institutional care.” It does not focus on the individual, but instead reflects the needs of the organization. It requires residents to conform to the rules of the system. This is demeaning to the person and reinforces the message that others are in charge of their future – not them.
For many people, this can lead to feelings of frustration, and that life has nothing for them to look forward to. This can result in anger, resentment, and depression. In my 18 months in long-term care, I witnessed all of these reactions from residents – particularly newcomers.

In June 2015, an analysis of reports from residents in all 628 long-term care homes in Ontario, reported that ‘…25.9 % of Ontario long-term care residents reported worsened moods from symptoms of depression in 2013-14, a rate deemed “significantly higher” than the national average of 23.8 per cent.’

Impacts of “Institutional Care”

For most of us, we can hardly imagine living a life in which we are simply “passengers.” Yet, for many residents in long-term care, that is how institutional life can feel.

A neighbour in long-term care who wished to stay in bed until breakfast time was woken and dressed early every day and then left in her room with nothing to do but wait until breakfast. She found this disempowering and infuriating, but was told that this was the best they could do.

I shared a room and some mornings my roommate was woken and dressed as early as 4:30 AM. He was then left in his bed until around 8:45 AM when he was transferred to his wheelchair and taken out to wait in the corridor until the dining room opened. Being woken up at 4:30 AM did little for my sleep patterns – or my mood!

I like to be up and about early. However, because I have high care needs, I would be left in bed until just before breakfast time. My caregivers were given just 10 minutes each morning to get me washed, dressed, and transferred into my wheelchair (using the ceiling lift and sling). This is difficult to accomplish in the best of circumstances. If I experienced breathing difficulties, or other problems then it became impossible.

One of my neighbours would often ask for assistance in using her smart phone but staff did not have time to help. This was very disheartening both to her and to the staff.

With so little support for people’s needs, long-term care becomes just “warehousing” of persons with disabilities. It is disrespectful and shameful! As a caring society, we need to do better.

As individuals, we may feel that there is little we can do. However, we can make change happen. Governments will respond if there is a significant vocal outcry from their constituents.

Possible personal actions you might undertake:

  • Visit one or more long-term care homes in your community, and talk with residents and staff about what they are experiencing and ways that they feel the situation can be improved;
  • Look for other sources of information about long-term care in Ontario (e.g., read portions of the Ontario Long-Term Care Act 2007 or “A Guide to the Long-Term Care Homes Act…” or read some of the opinions expressed by the Ontario Long-Term Care Association).
    Send a letter or, even better, talk with your local Member of Provincial Parliament (MPP) about what you have experienced and your concerns regarding long-term care;
  • Look for advocacy groups attempting to address issues with long-term care in Ontario and consider working with them (e.g., Concerned Friends  and the Ontario Long-Term Care Association);
  • Get involved in discussions on this issue with family, friends, and the community around you. Look for commonalities in experiences – both positive and negative;
  • If your time permits, and you feel moved to become more involved, consider volunteering at a long-term care home or becoming a “friendly visitor” to one or more residents.

If you encounter any situations in long-term care homes in Ontario that cause you concern, contact the Long-Term Care ACTION Line at 1-866-434-0144. This number is active seven days a week, from 8:30 a.m. to 7 PM.

Your actions can make a difference for those in long-term care in Ontario. Please do what you can! With sincere thanks for your efforts…

Long-term care in Ontario – failing to provide an adequate quality of life for adults with disabilities (Part 1)

This post was written by current student, Paul Benson.

word cloud
Long Term Care Word Cloud on White Background

Long-term care homes are not just for seniors. Any adult (over 18) who, as a result of disability, requires a level of care that they are not able to get in their home may be accommodated in long-term care.

“Long-term care homes are places where you can live and receive care services, such as nursing and personal assistance. They are sometimes called “long-term care facilities” or “nursing homes” (2015, Introduction).

“In Ontario, long-term care homes must follow a law called the Long-Term Care Homes Act. It includes a Residents’ Bill of Rights. The purpose of this Bill of Rights is to make sure that long-term care homes are truly homes for the people who live in them” (2015, Introduction). Extracted from “Every Resident: Bill of Rights for people who live in Ontario long-term care homes” (2015).

In Ontario, the population is aging and the occurrence of disability among residents is also increasing (from 15% to approaching 20%).

New residents arriving in long-term care often have very high care needs. This increase in the complexity of their care needs places further strain on an already weak system. When residents’ needs cannot be met by the long-term care system, there is often nowhere for them to go (unless they encounter a medical emergency and end up in hospital).

In Ontario, long-term care homes have been chronically underfunded and understaffed. As a result, nurses and caregivers are unable to give the personalized care that makes life rich and rewarding for residents. This situation has persisted for many years, under many different provincial governments. I believe that long-term care in Ontario is now in crisis, and needs immediate strong action to address the situation.

Under staffing leads to the following kinds of problems:

Registered Practical Nurses (RPNs) are typically overworked. They are responsible for giving medication and medical assistance to between 25 and 40 residents daily. This heavy workload often results in medications being delivered late. Additionally, the RPN has no time to provide more than routine care. This can be a very stressful and disheartening situation for caring individuals. I have talked to many nurses who have left positions in long-term care homes for this reason.

There are typically two Registered Nurses (RNs) to manage the medical needs of the entire long-term care home (often between 125 and 150 residents). This is a mandated minimum under the Long-Term Care Act. However, these nurses are typically “nurse managers” and often much of their time is taken up by administrative duties (e.g., phoning for additional staff to ensure that they are able to meet the legal minimum staffing requirements). For most of their activities are Nurse Managers, or administrators. The result of this work allocation is that they have very little time to provide actual medical care to residents.

Personal Support Workers (PSWs) in long-term care are routinely desperately overworked. Their schedule can seldom be achieved, and they typically have to work beyond the end of their shift to complete their workload. This results in increased stress and high rates of injury and burnout. I believe that using skilled and caring people in this manner is inappropriate, unsustainable, and constitutes exploitation. They deserve to be treated better.
The Ontario Long-Term Care Act has a powerful vision as to what constitutes respectful care for adults with disabilities: A level of care that enables them to enjoy a good quality of life while receiving appropriate supportive care in a respectful environment. It describes this kind of care as “resident-centred care” or “person-centred care.”

The article “Moving the agenda forward: a person-centred framework in long-term care” defines a person-centred care approach in the following way:

“In stark contrast to the regulatory mandates, a person centred care approach in LTC would require outcomes such as feeling appreciated as an individual, having something interesting to do during the day, experiencing moments that matter, honouring residents’ choices and preferences for daily living, maintaining important relationships and developing new relationships.”

In my opinion, neither of these visions of an appropriate level of care for disabled persons whose care needs cannot be met at home are currently being achieved. In the economically constrained system in Ontario, only “institutional care” is feasible.

For a description of my experiences with “institutional care” and why we need to move forward with “person centred care” as a priority for long-term care residents in Ontario, please stayed tuned for Part 2 – Long-Term Care IS Institutional Care: how we can turn this around?

The Accessible Canada Act – what it means to you, and to everyone with a disability

This post was written by current student Paul Benson.

graphic of screen which states "accessibility" tubes from the screen lead to a brain, an ear, a hand, lips, an eye and a keypad
Image from the The Concordia Greenhouse Project https://concordiagreenhouse.com/about/accessibility/

The Accessible Canada Act – identified as Bill C-81 – was introduced by the government in June 2018. It is described as “an Act to ensure a barrier-free Canada.” This bill is currently being debated in the Senate, and will hopefully become law in the spring of 2019.

Under the proposed act, all goods and services provided by organizations subject to federal control must be  accessible to disabled persons.

The federal government is responsible for providing many goods and services to Canadians. For example, regulation of railways and air travel falls under federal jurisdiction. Also, most ferry services, Canada Post, and telecommunications services are under federal control.

Specifically, the bill will identify, remove, and prevent barriers to accessibility in the following areas:

  • buildings and public spaces under the control of federal authorities;
  • federal employment (job opportunities, employment policies, and practices);
  • information and communication technologies (digital content and technologies used to access it);
  • federally controlled procurement of goods and services;
  • delivery of all federal programs and services; and
  • transportation (by air as well as by rail, ferry and bus carriers that operate across a provincial or international border).

Here is a summary of the bill.

You may have thought that the federal government would already make all its programs and services accessible to disabled Canadians. Unfortunately, this is not yet the case. For example, blind Canadians have had difficulty applying for jobs with the federal government. This was because the job application web pages for federal positions are not screen readable. In a landmark decision in 2012, the federal government was told that it must make its web pages accessible to blind users “within a reasonable period”. Follow this link for more details on this ruling. To learn more about Donna Jodhan check out this video on YouTube.

Current weaknesses in the bill.

While applauding the government for creating bill C-81, advocacy groups have pointed out a number of weaknesses in the bill as currently written. In particular, the bill sets few timelines for ensuring that the supply of goods and services subject to this bill are accessible to the disabled. Also, the definition of “disability” is currently not broad enough and, as a result, some members of the disabled community are likely to be excluded.

Since there is no fixed deadline specified in the bill, it may be many years before full accessibility is achieved (by contrast the Accessibility for Ontarians with Disabilities Act – AODA – set a date of 2025 for Ontario to become fully accessible).

Over 90 organizations banded together to create an open letter to the government highlighting their concerns with the act as written. Follow this link to read the open letter. The consultation period during which the government collected input from individuals and organizations was from June 2016 to February 2017. To read about the information the government collected follow this link. :

Organizations representing disabled people – such as the AODA Alliance – have requested that additional consultations take place early in 2019 to address the issues that were not addressed at Third Reading. The government has yet to respond.

If the Canadian government schedules additional consultations in 2019 we need everyone to participate! You do not need to identify  as disabled to have an opinion. Everyone knows someone with a disability who is close to them, and knows the difficulties that they face when access to goods and services is not designed with accessibility in mind.

Current status of bill C-81.

The bill passed Third Reading in the House of Commons on November 27, 2018; and First Reading in the Senate on November 29, 2018. For an updated status follow this link.

As the bill was originally written, organizations may be exempted from making their goods and services accessible without providing the public  with a reason for the exemption. This was changed at Third Reading. The bill now requires that the public be notified of the reasons for an exemption, and those exemptions are limited to a maximum three years.

Still, the enforcement mechanisms for the bill remain weak and are split across different entities (e.g., the Canadian Radio-Television Commission – CRTC, and the Canada Transportation Agency – CTA). This will make it difficult for the disabled community to get their complaints addressed without undue difficulty and time delays.

At the third reading there were amendments suggested by all parties, however only those amendments suggested by Liberal MPs were approved. All amendments suggested by the other parties were declined.

For more details on the changes made at Third Reading follow this link

The Senate can introduce further amendments to strengthen the bill (e.g., it can insist on the changes recommended in the open letter being incorporated in the bill).

This is a one-time opportunity to ensure that the bill has the greatest effect possible in making the provision of goods and services fully accessible at the earliest time achievable.

You can participate in this process by contacting any senator of your choice and asking them to implement changes to bill C-181 to reflect your own ideas and/or the advice contained in the open letter from the 91 advocacy groups. Follow this link for a list of current senators. Click on individual senators to see their contact information.

This is an opportunity for you to speak up. In doing so, you are helping to make this new law effective in changing the lives of disabled Canadians. Are you on board?

Disability Studies Goes to College

This post was written by alumna Donna Lee.

colour photograph of white woman smiling at camera
Photograph of Donna Lee

I have always loved facilitating learning experiences. Since graduating from Ryerson’s Disability Studies program I have been particularly excited about sharing the knowledge I gained throughout my time there.  Over the past several years I incorporated disability studies concepts into the training’s I offered to support staff in the developmental services organizations I have worked for. But I struggled with the fact that these concepts are often brand new, even for those who have worked in this field for years.  Why aren’t direct support professionals learning these things in the college programs that are meant to prepare them for this work? I made a shift in my career recently when I left my job at a developmental services agency and began teaching at Nova Scotia Community College in two of the college’s programs:  Disability Supports and Services (similar to the Developmental Services Worker programs in Ontario colleges) and Foundations in Educational Support (a program for educational assistants).

There were several things that appealed to me about teaching at the college level and that continue to motivate my passion for this role.  The students I teach will be the direct support professionals and educational assistants of the future and will have an enormous impact on the lives of disabled people.  Teaching them means that I can help to ensure that their impact is a positive one. Almost all of the students I have encountered so far have never been exposed to any discussion of disability outside of the medical model – the social and disability justice models do not seem to be standard fare within college curriculum. Much like many of us experienced in DST501, the introduction of alternative ways of thinking about and responding to disability can instigate an incredible shift in thinking that is essential to providing effective and respectful support. It is exciting for me as the instructor to watch this shift occur in my students.  I also love that the college environment provides lots of opportunity to be creative in my teaching methods and assignments and in this way to ensure access to the material for all students. This has been an important area of learning for me as I teach students across a wide range of ages, previous work and education experience, abilities and learning styles.

Of course teaching at college is not without its challenges; the college environment is steeped in the medical model and it is this model that informs the curriculum within the majority of disability related programs.  However, there is also often autonomy as an instructor to develop and adapt curriculum so long as it meets the defined learning outcomes for the courses. Even when these learning outcomes themselves are problematic I have found that there are creative ways to address the inherent medical model assumptions – sometimes by designing assignments that actually have students critique the learning outcomes.  It is important to teach the curriculum in a way that prioritizes the knowledge and experience of people with disabilities and supports students to question binaries of normal/abnormal in disciplines like psychology, power structures within disability services, and perceptions of competence related to IQ scores within education systems.

The concepts I learned during my time at Ryerson University provided a foundation from which I can challenge the established teaching methods that many college disability programs rely on – things like disability simulations, special needs language, and deficit-based understandings of disability.   While I have searched out a few like-minded colleagues who are also supportive of challenging this long-standing medicalized approach to disability, I have also encountered resistance to alternate ways of understanding and teaching about disability. But ongoing conversations throughout the college seem to indicate a growing interest in disability studies grounded approaches. I am excited to be a part of this change!  

My path to this point in my career has been a bit meandering and has taken a little longer than it might for most. It started with taking a Developmental Disabilities Worker Certificate at college more than a couple of decades ago, and then continued with several years working within developmental services in various roles while completing first my undergraduate in Disability Studies at Ryerson and then a Master’s in Critical Disability Studies at York University.  During my Master’s degree I worked as a Teaching Assistant for a first-year undergraduate course in human rights. This experience helped me to realize that teaching at the post-secondary level was something that I wanted to eventually pursue further. After graduating from York, I returned to work in the developmental services field, taking advantage of opportunities for professional development in Adult Education, and volunteering to take on any in-house trainer roles as I continued to hone my instructional skills.  I also worked part-time in a few different instructional roles providing education sessions, teaching online, and facilitating workshops outside of my regular job. When I heard of a college looking for someone to take on a brief part-time contract teaching a single course within their Developmental Services Worker program I jumped at the chance to re-enter the post-secondary environment at the college level this time. A few years later, when I eventually applied for a permanent faculty position at a different college, this combination of field experience and education, together with the adult education training and experience I had accumulated, were what enabled me to be successful in my candidacy.

There are several diploma and certificate programs within the college environment that have a focus on disability – developmental services worker, behavioural intervention/technician, educational assistant, personal support worker, early intervention/resource consulting are just a few such programs.  All of them need DST graduates to teach the next generation of direct support professionals (whether they know they do or not!). If a career at college interests you I offer the following advice:

  • Build your experience both in the field of disability services and in adult education;
  • Take an adult education course (or several!);
  • Consider obtaining a Master’s degree (a Master’s degree is not always required when applying for college instructor positions but is very often preferred for full time faculty positions);
  • Don’t rule out online teaching – this format has many advantages including fitting in well with other full-time work, and can serve to broaden your search beyond your local geographic area;
  • Make use of websites such as http://www.ontariocollegeemployment.ca/  and https://jobs.collegesinstitutes.ca/ in your search for instructor and faculty positions.

Accessibility for all in Ontario: Why it is important, and why it needs you to help make it happen

This post was written by current student Paul Benson.

colour photograph of white access symbol on blue background

Full Accessibility means that all Ontario residents will be able to obtain the goods and services that are important to them without facing additional barriers due to a difference in their personal situation that could be considered a disability (e.g. limited mobility, a speech difference, etc.).

The mechanism that the Ontario government has implemented to ensure that Ontario becomes fully accessible is called the Accessibility for Ontarians with Disabilities Act (AODA). This was a landmark piece of legislation when it passed in 2005. Under its provisions, Ontario is required to become fully accessible by 2025. This is the aim of the legislation, but it is not happening fast enough or widely enough across the province. You can read more about the AODA via the AODA website.

Why aren’t we progressing faster towards full accessibility?

I believe that the glacially slow progress is due to three related factors. First, the government has put little effort behind enforcement of the AODA rules. So why should businesses, non-profit groups, and other organizations put time and effort into becoming more accessible when the government doesn’t appear to see it as a priority?

In a recent CTV news article Michelle McQuigge writes;

Government data obtained by the [AODA] alliance showed that since 2013, more than half of private-sector companies with at least 20 employees had not filed mandatory AODA compliance reports. During that time, the government issued only five monetary non-compliance penalties” (para, 11).

Second, over the last 10 years or so, the issue of accessibility hasn’t been discussed as much as it probably should have been. Stories of problems due to limited accessibility do not make headline news. One example is the work of of Luke Anderson and the Stop Gap initiative that he founded. Or check out the work of David Lepofsky. 

We should be seeing many more stories like this. They should be appearing daily on the news, and in the press.

Thirdly, and possibly most importantly, we the residents of Ontario haven’t been pushing government, business, and all the other entities that we deal with, telling them that accessibility is important to us and needs to be addressed urgently. The key to achieving change is when we all demand it and will no longer accept the status quo.

What if I don’t have any disability? How does it relate to me? Why should I be championing the cause of accessibility? What does accessibility mean in my life?

Accessibility is not just about ensuring that people in wheelchairs can get into buildings. If I have a learning disability, I should still be able to get educational services that work for me – I shouldn’t be excluded from appropriate opportunities to learn. If I’m Deaf, I should still be able to shop, participate in public meetings, socialize with friends, all without facing unnecessary barriers. If I have a speech difference, I still have the right to be listened to and treated with respect. 

Better accessibility across the province helps everyone. Families with young children find curb cuts, ramps, and level access makes life easier when using strollers. People using shopping carts, or making deliveries find those same facilities make life easier for them. When an automatic door opener is available, everyone uses it and appreciates it. It’s not just for the disabled.

Accessibility also increases economic activity. If everyone can participate fully in life in our province, without facing unnecessary barriers, we all benefit. It is poor economics to put barriers in the way of a disabled person getting a job – thus forcing them to rely on government benefits. Yet that is what we typically do.

In some area of our lives, we can all benefit from improved accessibility. As pointed out by David Lepofsky – volunteer Chairperson of the AODA Alliance – an advocacy group for accessibility – “… the disabled are all of us.” 

At some time in our lives we will all experience some type of disability, or have a significant person in our life who does. Wouldn’t we want all the services we rely on to be as easy to access as possible?

The Third Review of the AODA is happening currently, with the resulting report due out by the end of this year. There is still an opportunity for you to provide your views on how the AODA is working for Ontario through their website.

At the same time as this review of the AODA is occurring, the proposed federal Canada Accessibility Act is proceeding through Parliament. This legislation will ensure the accessibility of services provided to you under federal jurisdiction (e.g., broadcast services under the jurisdiction of the Canadian Radio-Television and Telecommunications Commission – CRTC). More information on the Canada Accessibility Act is available via their website

The AODA Alliance have provided feedback to the federal government on their concerns with the proposed act. You can read about their concerns via their website.

The common timing of these two activities makes this an ideal time for you to speak up on what you want your provincial government and your federal government to do to improve the accessibility of all the services that you use and value.

Are you ready to do that?

 

2018-2019 Student Alumni Advisory Committee

This post is an introduction to the members of the School of Disability Studies Student Alumni Advisory Committee. You can find the latest meeting minutes on this site. To learn more about the committee contact Kim Collins at kimberlee.collins@ryerson.ca

Kim Collins is the student engagement facilitator for the School of Disability Studies. She is an alumna of the program class of 2015.

Members at Large:

My name is Laura Mele, I am a member of SAAC. I have been part of SAAC for two years. I am my third year of Disability studies. This is amazing program and there are some amazing people I have met and try different activity. I am from a small town located in Southwestern Ontario, and I enjoy bring new idea to the team!! I hope to met more of you at different events! If you have an question please feel free to contact me!

Driven by passion to promote access to education for all, Marsha Ryan entered the program to explore how Disability Studies can enhance her knowledge and skills. On her academic path, Marsha immersed into a vast pool of theoretic and practical tools to further advocate for access.  After her graduation, Marsha continues implementing educational strategies that would meet the needs of so many. She is proud to be a Disability Studies alumna and part of the SAAC, as this is a way to bring change.

Carling Barry was in the Disability Studies Program from 2007-2016. She currently goes to Niagara University for her Masters in Developmental Disabilities. She volunteers at Parent Network of WNY as well as Inclusive Theater of Western New York. She really enjoys volunteering at these places as she is learning about USA organizations, how they differ from Canada or are similar, the laws and programs etc. She also volunteers in Toronto, Canada with L’Arche Toronto through Sol Express Theatre program. In her spare time she likes to read, write, go to concerts, theatre, listen to music and hang out with friends. Carling is excited for this new chapter of her life and finding a new job in the Niagara Falls/Buffalo USA.

My name is Andrew Letchuk and I am currently a student in the Disability Studies program at Ryerson University. In the beginning of the Fall 2018 semester, I decided to join The DST program’s Student Alumni Advisory Committee because I believe that this would be a wonderful opportunity for me to get actively involved in discussing about important disability related topics and taking the time to meet new people along the way. I am really grateful to be accepted into this amazing group with other wonderful members and I am very proud to call myself an official member of the SAAC at Ryerson University!

My name is Simran Bassi. I am currently taking my second course in the Disabilities Studies degree program. I am looking forward to expanding my knowledge and being able to understand students’ needs so I can support them. I’m excited to be part of the SAAC committee so I can make a change in the social service system by working with students to challenge their weaknesses, promoting diversity and inclusion by being a good leader. I also look forward to sharing my experiences to the board and continuing my work as an advocate for young students.

My name is Trevor Smith and I am a member at large of the SAAC. I have been studying with the disability Studies program since the summer of 2016 and have worked with great people and learned a lot about myself, Ryerson and the Toronto Community. I joined the SAAC in 2017 and since then have been the recipient of the Emma Hardy International Disability Award. I am currently enrolled in DST 99 and have started my thesis and I am entering my final year in the Disability Studies program at Ryerson University.

Personal Reflection on “Workshop on Doing Institutional Ethnography in/with Community Organizations”

This post was written by DST graduate Habiba Rahman.

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I am very thankful to Dr. Kathryn Church, Associate Professor and Director, School of Disability Studies, Ryerson University, for offering me the opportunity to participate in “Workshop on Doing Institutional Ethnography in/with Community Organizations.” This was a workshop for international sociologists and local researcher/activists. I was honored and privileged to get the opportunity to participate as well as have discussions with knowledgeable  scholars. When I reached the workshop held on Ryerson campus I was warmly welcomed by Kathryn. She hugged me, and directed to sit beside two other participants with who I had effective and energetic discussions on pros and cons of institutional ethnography as a research methodology. During lunch break, we also had vigorous discussions on wide range of issues related to the topic of workshop. For instance, we exchanged thoughts and views on capitalism, colonialism, global politics and marginalization of minorities, systemic barriers and Canadian immigration policy, and so on.

It was a memorable experience to listen the lively and spontaneous presentation by Julie Bomberry, Susan Warner, and Amye Warner on their institutional ethnography research work entitled “Building Change on and off Reserve: Six Nations of the Grand River Territory”. The way the presenters delivered their speech by taking turns, and through mutual interactions, was a great learning experience for me to understand how conversational ease can be added in a formal setting.

As a first generation immigrant from South Asia I have limited knowledge about Indigenous people. This workshop was eye-opening for me as the presenters started their introduction with a brief history of the Haudenosaunee and the Six Nations of the Grand River. An essential part of their research was linked to Ganohkwásra Family Assault Support Services. One of the presenters explained that “Ganǫhkwásra`” is a phrase in the Cayuga language meaning “Love Among Us”. The name is in keeping with the organization’s goal of establishing peace in families torn with violence by facilitating community support and hope.

What I found most interesting was the presenters’ sharing of experiences, knowledge, and views about institutional ethnography that they used in developing their project. Before attending this workshop, I had very limited understanding about institutional ethnography. I was introduced with this methodology in the course DST88 Research Methodology, but as I choose Narrative Inquiry as a research approach to do my independent research project (as part of DST99). Thus, I did not dig into the core concepts of institutional ethnography. Therefore, in the workshop, when the presenters talked about this methodology, particularly highlighting the challenges they encountered in accessing municipal, provincial, and federal organizations to collect data, was illuminating to understand institutional ethnography works as a research methodology. The key learning or take away for me was researchers’ repeated emphasis on “building relationships” as one of the core characteristics of institutional ethnography. I also understood that this research methodology does not test a pre-existent hypothesis; rather it looks for the problematic in the lived experiences of people in everyday world, and thus by exploring a problem from the bottom, it investigates through the use of interviews the systemic barriers ingrained in the institutional and organization processes.

It was really a memorable moment for me to have a chance to talk with Julie Bomberry during lunch break. At that time, Julie explained to me how I can apply my knowledge of narrative inquiry while doing any research project through an institutional ethnography lens.

Overall, as a novice researcher I was significantly benefited from the opportunity to participate in the workshop. At the end of the workshop, I had developed a keen interest in doing research through institutional ethnography in future.

Welcome to the new ELA post-doctoral fellow: Dr. Loree Erickson!

This post was written by Dr. Loree Erickson the new Ethel Louise Armstrong Post-Doctoral Fellow.

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Dr. Loree Erickson

Hi all!

I am thrilled to be joining all of the brilliant people here at the School of Disability Studies and an incredible group of ELA Postdoctoral Fellows, most recently held by Dr. Tobin LeBlanc Haley.

Here is a little more about me, but I look forward to getting to know you all as well. I am a white, queer, from a mixed class background. I grew up in the territory of the Piscataway and Haudenosaunee Confederacy in rural northern Virginia. I relocated to Tkaronto from Richmond Virginia where I did an undergraduate degree in Politics and Women’s Studies and was a founder and coordinator for The Richmond Queer Space Project a.k.a. Queer Paradise, a community space and collective living project. Once I moved here I was part of the first group of students to complete the Critical Disability Studies Masters at York University in 2005. I then completed a PhD in Environmental Studies with a dissertation titled Unbreaking Our Hearts: Cultures of Un/Desirability and the Transformative Potential of Queercrip Porn.  This research engaged queercrip community as knowledge and cultural producers to interrogate the manifestations and impacts of systemic oppression in our lives as well as highlighting distinctly queercrip practices of resistance with a focus on the collaborative production of queercrip porn. I am also the creator of want, an internationally award-winning queercrip porn film. I am a forerunner in theorizing and thriving through care collectives having met the majority of my care needs through my community for 20 years.  I have organized with the Queer Liberation Front, 81 reasons, Prisoner Justice Action Coalition, DAMN 2025, Acsexxxable, and most recently Queers Crash the Beat. As a sessional instructor at Ryerson, OCAD, and U of T I have been offering classes on sexuality studies, transformative justice, queer theory, gender studies, disability justice, and pop culture. In addition to all of these things I am also a fan of cats, Buffy the Vampire Slayer, sun, sparkly things, and social justice.

During my next two years here at Ryerson’s School of Disability Studies I plan to build on and from ideas central to my dissertation and also aspects from my lived experience. I am mostly going to focus on 2 big projects and probably some smaller ones as they come up. Here is a little more about the research projects I will be working on.

Challenging Cultures of Undesirability and Cultivating Cultures of Resistance Summit.

One project will expand conceptualizations of cultures of undesirability, an intersectional, conceptual framework I developed to name the number of ways that marginalized people are actively imagined as undesirable others, and to bear witness to the systemic and interpersonal impacts of this construction. Cultures of undesirability also enables us to explore all of the rich complexity surrounding systemic oppression in a way that seeks to hold the tension of the need to access protection and rights via state recognition in order to navigate a tremendous number of barriers to well-being, expression and fulfilment while at the same time acknowledging the limitations and consequences of such pathways.

I will be organizing and hosting a weekend long summit called “Challenging Cultures of Undesirability and Cultivating Cultures of Resistance Summit.” I will be inviting 10 to 15 scholars, activists, and artists chosen in consultation with directly impacted communities (harm reduction advocates and users, sex workers, disabled folks, mad folks, trans community, Prisoner Justice activists, etc.) to share papers, performances, and strategies for making change in a variety of formats.

Collective Care Digital Storytelling Project and Website

I started meeting my care needs through collective care because of the inadequacy of government funding to hire care attendants as well as homophobia and disableism from agency-provided care providers. So my friends and I familiar with grassroots organizing that centred community-based solutions to social problems started my very first care collective. I have been meeting my daily care needs (going to the bathroom, eating, maintaining my home) through a collective of volunteers from my community for almost 20 years.  Having one of, if not the longest running care collectives in north America, makes me uniquely situated to lead this research.  I also feel in taking up collective care as a site of queercrip survival and flourishing exposes oppressive normative ideologies and explores conceptual and practical frameworks for building practices to keep marginalized people safe when state interventions fail or expose marginalized communities to more violence and harm.

As so much of the learning and theory making and living of collective care happens between bodies, in private interpersonal moments the knowledge generated in this experience often remains with the people who are involved in the specific care relationships. For years now, people have approached me to share these experiences as well as create tangible resources for other people who wish to form care collectives or who have care collectives. This project is an answer to that call for a gathering of the collective knowledge generated in moments of politicized collective care. I plan on creating an interactive, social-media style website through which collaborators (including myself) can post digital media, and collectively analyze posts through comments and tagging.

Care Cafés

I am thrilled to collaborate with Dr. Eliza Chandler, Dr. Esther Ignagni, and Kim Collins around their death cafés exploring the linkages and interdependencies between death and care.

Queercrip Porn Focus Groups

The lack of representation that fully communicates and reflects disabled people’s complex personhood is well-documented. One area of erasure that my research addresses is sexual representation. My video, want, was the first of its kind in 2006. When I embarked on my dissertation research there were a small handful (if 2 to 3 videos can count as a handful) of queercrip porn videos produced in the spirit of community-based art projects. This work is grounded in storytelling, embodied testimony, video and other participatory crip methods that are informed by transformative justice, queer theory, disability justice and radical access. Our co-created porn narratives have created spaces of community building where subjugated knowledges are revalued, practices and understandings of bodies, affect, disability and desire are transformed, and alternative worlds and imaginaries are made. I focused my dissertation on the transformative impacts of making co-created porn from a disability justice framework. I am hoping to hold between 2 and 4 focus groups where I would show the videos produced for my dissertation in order to discuss the transformative impacts of encountering queercrip porn on queer disabled communities and nondisabled queer communities.

Come See Me!

I am also really excited to be getting to know all of the fabulous people involved with the School of Disability Studies! If you are a student or faculty and you are interested in chatting about any of these things or, even things that are adjacent to any of this, please come by my office (right inside the disability studies area) or send me an email loree.erickson@ryerson.ca and say hello.