Learning About Disability Movements in Alberta's History

Learning About Disability Movements in Alberta’s History

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Learning About Disability Movements in Alberta’s History

“ People we serve, whether directly requesting or not - are asking all of us by nature of being supported by Skills to not become complacent nor settle.

We are all being called to keep striving to support people we serve to make life the best that’s possible - and what’s possible can often be expanded by leaders who have a conviction that the good life is for everyone no matter what.”

- Ben Weinlick

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Key Movements in Disability Rights History To Be Aware of

Where ideas for these movements have mostly come from until recently

Below is a summary of key disability movements in Alberta in the last 50 years. It’s important to recognize this is the tip of the iceberg when it comes to understanding the evolution of disability rights in Alberta - these brief summaries have been designed to be short and accessible, offering key points to help leaders on the ground working alongside people with disabilities. They do not capture the nuance and depth of each of these movements that have been elaborated upon within disability studies by activists, scholars, and changemakers over several decades. They also did not happen in isolation or one after another - many of them have and continue to take place at the same time and influence one another. If you’re interested in a deeper dive we’ve provided some links and resources to get you started.

For about 50 years, many of the disability rights movements were influenced and shaped by diverse perspectives. Some of these included: • • • • • • • •

Lived experience of families and people with disabilities wanting change Grassroots community organizing ideas (Saul Alinsky) Paulo Friere and Critical Pedagogy Influence from the Civil Rights, and Women’s liberation movements of the 60s and 70s in North America Social Role Valorization (Wolf Wolfensberger) 1975 United Nations Declaration on the Rights of Disabled Persons Asset Based Community Development (John McKnight) Learning organization and community of practice theories for changemaking (Peter Senge, Margaret Wheatley, Etienne Wenger)

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Institutionalization and Eugenics Before we take a look at some of the key movements in disability rights in Alberta, it is important to pause and acknowledge why these rights movements have, and continue to be needed. These rights movements have been necessary because of a collective history of treating people with developmental disabilities as less than human, and in terrible ways, in the not-so-distant-past. Alberta has a dark history of institutionalization (forcing people to live in large groups and harsh living conditions away from their families) and eugenics (forcing people to be sterilized and preventing people from having children). Although institutionalization and eugenics are no longer actively happening in Alberta, some of the remnants of these ideas, discriminatory attitudes, and false beliefs around what people with developmental disabilities can do and have rights to, still exist today. This is why movements like the ones described below still exist and are important as we continue to advocate for people with disabilities to be seen and valued as citizens just like anyone else.

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De-institutionalization and Community Living Movements The ideas of deinstitutionalization and community living began to surface in Alberta in the 1970s out of a growing recognition that institutions are no place for people to live, that they create space for abuse and other harms to happen, and that people with developmental disabilities deserve the same rights and treatment as any other Albertan. A key focus during this time was helping adults with developmental disabilities move from large congregate care facilities and institutions to live in regular homes in community alongside all other citizens. This was a grassroots movement, started and led mostly by families who wanted more for their children. Several different support organizations, some of which still exist today (including Skills Society), were started during this time to support people in the move from institutions to regular houses in neighborhoods.

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Challenges we’re still grappling with: Even with the values of community living well established today, there can still be ‘mini institutions’ embedded in neighborhoods where people still don’t really have a vibrant home life, much choice in who they live with, or control over what their life looks like. It can feel like their home is still a medical-like setting, rather than a real home where medical needs and belonging needs are equally supported and centered.

At Skills Society, we strive to show the values of the community living movement in our work. We do not run group homes. We support people who live in their own homes. We don’t have facilities with ‘beds to fill’. Based on approved funding from PDD, we help people meet potential roommates, decide if there is a match and they want to live together, and work with them to find a good living arrangement that suits the wishes and needs of all roommates.

Family Movement In institutions, often families were told they didn’t know how to support their loved one and only medical facilities could meet the needs of their loved ones. Before the 1980s it was very hard to question this assumption and children and adults with disabilities ended up not being allowed by the system to be raised at home or to live in community.

One of the big drivers of deinstitutionalization was families of people with developmental disabilities who wanted their loved ones to live in regular community neighborhoods.

What living outside the institution looked like was different for each person - sometimes this meant being supported to live with a family member in their home, or sometimes it meant people living in their own home while still seeing and connecting with family.

Challenges we’re still grappling with: Sometimes our current systems expect families to have to do everything forever for a loved one with a developmental disability. This is not sustainable, nor how most families engage with adult family members without disabilities.

Often a parent has to be a parent in addition to a team leader, manager of contracted services, hiring HR person, payroll admin, and support staff to their son or daughter.

Collectively as a service system, we struggle with how we can have a system that allows family members to be family members, creates space for individual autonomy and for families to be supported in co-creating hopes, and support systems alongside a loved one. Sometimes there can also be challenges if the wishes of an adult with a developmental disability are quite different from their parent or guardian.

In addition, some people with disabilities don’t have family to help and so we need to support people to make close connections with unpaid supports and allies through community connections.

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Normalization and Social Role Valorization Movements Normalization, also known as social role valorization (SRV) was a group of ideas that was developed from the work of Wolf Wolfensberger in the 70s and 80s. These ideas shaped many supports and services during these times and pieces of SRV can still be seen in supports and services today. In particular SRV underlies much of the early disability family movements and some of the values underpinning SRV are still very much present in training workshops and resources available to families today.

A basic tenet of role-valorizing efforts is the notion that the good things any society has to offer are more easily accessible to people who have valued social roles (e.g. son/daughter, employee, neighbor, community leader).

Helping marginalized people have more socially valued roles was seen as a way towards people being afforded the same privileges others with valued roles in society enjoy.

Helping people find valued social roles includes things like

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helping people find their gifts and contribute those in a meaningful way in places where they live, work, and play.

In general, the idea of helping people find their gifts and contribute those is still in practice and a good thing today.

It’s important to recognize that SRV did help in early days to get supports and systems to think about not putting people with disabilities into devalued and dehumanizing jobs such as sheltered workshops where people would make only a few pennies a day for quite involved labor. There is still merit in thinking about supporting meaningful roles people can contribute and take part in. When we ask ourselves, are people with disabilities enjoying lives pretty much like any other citizen, in terms of work, education, home life, participation in the community and so on, we are asking good questions that have roots in role valorization ideas of the 70s and 80s.

Challenges we’re still grappling with: A key critique of SRV is that it’s based on the notion that the person has to adapt to society to fit in, rather than society having to adapt and uproot discriminatory assumptions about disability. Some of the ideas in SRV can push people to adhere to assumptions of what is “socially normal” or valued in society and then make people with disabilities adapt to meet these assumed static norms of society. This is usually at the expense of people being welcomed and celebrated for who they are on their own terms. Wolfensberger called this “normal” - the “culturally valued analog”. In SRV there is often a search for how to make people with disabilities more like the culturally valued analogs in society. This can leave out many unique identities and interests and assumes there is a static and privileged definition of what is socially valued as “normal”.

At Skills we strive to help people find their gifts and interests, contribute those in unique ways, and be valued for who people are, as they are. So, yes, we should help people find meaningful roles based on their unique gifts.

Defining what a meaningful role is though, should be cocreated by a person with a disability, their supports, and informed by ideas in the culture and society the person lives in.

tangible example: We shouldn’t be too quick to A assume that a person we support can’t work and can only volunteer forever. If the person wants to work, we can get creative in helping see possibilities for that person to contribute in different and unique ways to a workplace. Perhaps they can work, but the way they show up in the workplace might look a little different and that’s ok.

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Self-Advocacy Movements

Person-First Language Movement

The voice of people with developmental disabilities is often not heard in key decisions that affect their lives.

Although many folks might need advocates and allies to speak up for their interests, the self advocacy movement that started in the 80s/90s really aims to empower people with developmental disabilities to assemble, learn about their rights, speak up, and create advocacy campaigns around key issues they face. The Self Advocacy Federation in Edmonton and the Disability Action Hall in Calgary are examples of collectives of self-advocates coming together to work on systemic issues. Self advocates helped to develop our foundational “Rights We Want!” document that is reviewed every year by people we support, staff and families at Skills.

Being attentive to the language we use is important.

Language can help liberate or oppress people as language conveys often hidden assumptions we need to be more aware of. In the old medical model perspectives on disability, people with developmental disabilities were often seen as just their disability or just a label the medical system put on people (for example people were wrongly referred to as “handicapped”, or “down syndrome girl”). These systems often saw developmental disability as something to cure or fix and this too often dehumanized people as it implied that people were not good enough as they were. These older medical model systems and ways of thinking tend to omit the human being trying to have a good life, like any other citizen.

Challenges we’re still grappling with: Some folks still need allies to help them communicate needs, wishes and ideas. How can we get more creative to listen and be attentive to wishes and needs of folks with developmental disabilities who can’t as easily communicate ideas? Historically, some within the family movement have not always been supportive of self advocacy groups. This stems from a belief in family movement perspectives that people with disabilities should be embedded and included in all types of justice movements (e.g. movements around racism, feminist movements, etc.), not “segregated” in a disability only movement. At Skills, we see a need for both inclusion in any type of interest group a person with a disability wants to be involved in, and also that people with developmental disabilities may want to be part of collectives of only people with developmental disabilities to share kinship, community, and be supported.

In the 90s there began to emerge what was called a personfirst language movement. In this movement instead of referring to people as, for example, an “autistic person” or “down syndrome person”, there began to be a shift towards focussing on the person, not their disability label.

So, for example, if you are using person-first language you would say “person with autism”, or a “person with down syndrome”. This person-first language continues to be used frequently today and is generally considered to be a respectful way of talking about the experience of disability in Canada.

Other, different types of language movements have grown since person first language emerged. For example, you might have heard of ‘identity language’. This has emerged from some groups of people who experience disability who don’t feel like person-first language fits with how they experience disability. In identity first movements people who experience disability reclaim their disability identity saying it is an important part of who they are and that they do not want to be distanced from it (in contrast to person first movements). In these movements people have reclaimed their disability label and want to show others that they are proud of their disability. Examples of identity first language might be someone identifying as an “autistic” or “crip”.

Challenges we’re still grappling with: Identity first language doesn’t work for everyone. Some folks with developmental disabilities don’t have the ability to understand and choose for themselves what language they want to be used to describe their experience of disability. In these situations, a good practice is to lean towards person-first language as it is generally considered a respectful way to talk about disability. Another important piece is that advocates and allies can’t really reclaim labels on behalf of other people, only folks with lived experience of disability can. The key thing to remember is to be respectful of how someone prefers to refer to themselves and to always see the humanity and dignity in everyone. Treat people the way you would want to be treated. Call people by their name or how they ask to be referred to.

At Skills Society, we generally use person-first language when it is necessary to identify a person as having a disability or we use the language that people want us to use. A good practice is to pause and think for a moment and consider if it is even necessary to identify the person as having a disability when talking about them. Sometimes it is, but oftentimes it’s not! Often it is sufficient to just use someone’s name or refer to them as a person just like you would anyone else. For example “We support Jimmy” or “I support people in their homes” rather than “my patient” or “my client” or “I support a consumer of service”. At Skills we try hard not to refer to people and where they live as programs (e.g. Program 45B), instead we use language like: “We support Jimmy, Suzie and Bill in their own home on the west end of town”.

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Person-Centered Practice Movement In the past, but still happening today, people with disabilities were left out of important conversations and decisions that affected their lives. Person-centered practice or sometimes called person-directed planning strives to ensure all disability service planning, policies, procedures, and evaluation are informed by and responsive to the needs of the people whose lives they impact. Learning about this and changing systems to center the voice of people more, became a movement in disability service organizations in the early 90s until present. Skills Society even has this embedded in our culture as one of our 5 core values and helped create MyCompass Planning which is all about centering this value and practice in the daily support of people. Today PDD government policy even states that service plans have to be person centered and the voices of people served and families centered in planning processes.

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Challenges we’re still grappling with: Person-centered practice always starts from asking people we serve what they and their families might want support to look like for them. Asking what a good life looks like to them and figuring out ways to support them in their own unique way that works for them. What can be tricky is if people with developmental disabilities struggle to communicate needs, hopes, and wishes, we have to get creative to learn what might motivate people, what people might like and not like, and what might help them live to their fullest. If people can’t tell us what they might like in life, it can be easy for systems to just settle and stick to basic care without helping people explore and try new things to learn about themselves. Striking the balance of supporting existing needs, while also helping to broaden horizons and try new things will always need to be reflected on when supporting people. Our MyCompass Planing Labs, MyCompass Missions, and Videos in MyCompass all help everyone to learn about person centered practices and get ideas on how to support broadening horizons. Please take the time to look at the videos for each planning pillar in MyCompass.

Disability and Sexuality Movements There has long been assumptions and prejudice in attitudes around sexuality and people with developmental disabilities. Sex and sexuality is a big part of being human for most people and equally important to many people with disabilities in the world. Often families and support workers find it awkward to acknowledge and know how to respectfully and safely navigate supporting someone to explore safe relationships and sexuality. This is very sad as one of the more common things that people with developmental disabilities say they want in order to make their lives better is having a partner and exploration of romantic relationships. Our systems, and services have historically not been well equipped to support people with relationships and healthy sexuality. When there were still post secondary programs around disability and community living, a big emphasis in those programs was equipping graduates with knowledge to understand the stigma surrounding these issues and how to safely advocate and support people with disabilities who want to pursue romantic relationships.

Challenges we’re still grappling with: It is easy for systems and services to ignore and brush under the rug requests for support to explore romantic relationships, and sex education. If a parent or guardian doesn’t want their son/daughter to explore relationships even if their loved one really wants to, it can be easy for service systems to justify ignoring requests from people they serve because their guardian doesn’t want them to pursue further. With post secondary education programs now all closed, many staff are not trained and equipped to navigate these tough conversations and help people advocate for their right to explore relationships safely.

With social media and dating apps and the potential for exploitation of people with developmental disabilities, sex education and safety is especially important nowadays. At Skills we are exploring further potential training for staff and people we support to take, but funding for this type of training is rarely supported by our Government funder.

At present, within Skills, talking about how to respectfully navigate this important but tricky area is best had with a manager. There is also a good video on MyCompass under the relationships pillar that shows up for everyone when creating a new plan. The video highlights principles to consider in safely supporting romantic relationships in this area.

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Engaged Citizenship Movements In the late 90s and early 2000s, movements began around looking at rights, and developmental disability through the lens of citizenship. Here citizenship is meant more broadly than just membership to a country. Here citizenship refers to our roles as active citizens in our communities - being neighbors, contributors, and leaders. Too often people with developmental disabilities were/are treated as second class citizens. By exploring with people with disabilities what being valued as a full citizen means, it helped to co-create knowledge around what people, systems and disability support services should focus on to help people be seen, heard and valued as full citizens. Inherent in the citizenship movement was that there is not one perfect definition of full citizenship, but that what a good life as a full citizen means is always being co-created with people with disabilities. Skills Society embraced and led around this movement for many years. We had initiatives like Project Citizenship that was internationally recognized for explorations of citizenship and disability. In project citizenship - people with disabilities, Skills support workers, and University of Alberta students and professors explored what being a citizen can mean and documented many types of stories that illustrated ideas that people with disability recognized as important in supporting full citizenship.

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Challenges we’re still grappling with: Sometimes people get confused by the word citizenship and think it is referring to membership to a country (for example being a Canadian Citizen). But in this approach citizenship is meant more broadly as how we all are citizens - active members of our communities. People also often longed for clear definitions and principles of supporting citizenship and got confused by the complex idea of always striving to co-create knowledge of what citizenship means and looks like. Fast forward to today and we have a really decent model embedded in our work around 4 key principles of supporting citizenship. In the model there is still lots of room for co-creating knowledge of what a person we serve feels being valued as a full citizen looks like for them. Stories of engaged citizenship did help to overturn negative stereotypes and showed how we can’t settle for just supporting good enough lives.

Check out the Project Citizenship stories at projectcitizenship.com

Accessibility Movements So much of our built environment, services and systems were not, and still are not, built to be accessible and inclusive of people with physical and developmental disabilities. Accessibility can be defined as the design of products, devices, services, vehicles, or environments so as to be inclusive and usable by people with disabilities.

Accessibility is strongly related to universal design which is the process of creating things and environments where there is access for the widest possible range of abilities and situations. Physical disability rights advocates have worked for decades to get simple policies and practices in place so that for example there are wheelchair accessible bathrooms in public spaces, no step entrances, and curb cuts so that people using wheelchairs or with other mobility impairments can easily move about a neighborhood or town.

Challenges we’re still grappling with: A common assumption held by people is that accessibility work is around things like architecture and making physical environments more accessible (for example advocating for ramps, no step entrances, and accessible bathrooms).

Although these are important parts of accessibility work, they are not the whole picture. More recently some advocates and scholars have been talking about access rather than accessibility. In doing so they are trying to broaden thinking around accessibility to include more than just the physical accessibility of a space. They advocate for things like the cultural and social environments to also be considered when talking about accessibility - how attitudes, language, and approaches also need to be shifted to make all people feel more welcome in spaces. They also draw attention to the disabilities that can be often left out of conversations around accessibility like people with developmental disabilities or those with sensory disabilities (e.g. people who are blind or Deaf). They advocate for things like using simple plain language, slowing down the speed at which content is delivered, offering closed captioning, and visual alarms as additional important parts of accessibility.

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Opening up PDD eligibility to serve citizens with complex service needs The eligibility criteria that an individual with a developmental disability must meet to receive PDD support services is rigid and set by the government. In the early 2000s, it became more recognized that some citizens with developmental disabilities were falling through the cracks needing supports but not able to receive them because they did not meet the specific PDD eligibility criteria at that time (for example, citizens with Fetal Alcohol Spectrum Disorder (FASD) but no formal diagnosis or citizens with a mild intellectual disability as well as mental health challenges).

When these citizens do not receive the support they need, they can struggle with things like addictions, gang involvement, mental health challenges, and houselessness.

Unfairly, this segment of vulnerable citizens often end up involved in the criminal justice system, houseless, or relying on hospitals and other health systems that are not built for their needs. Today this group of people are often labeled as having “complex service needs” in the PDD system (different from people labeled with complex behavior or medical needs).

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After many advocacy efforts from people with disabilities, their families, allies, and service providers around this issue, the PDD system responded by making it easier for Albertans with developmental disabilities and complex service needs to access PDD services. This was welcomed in the sector, however it soon became clear that supporting people labeled with complex service needs was quite different from supporting the people with developmental disabilities whom the PDD Community Living system was originally created for in the ‘70s & 80s. Skills Society rose to the challenge to figure out ways of supporting this population and their unique needs. To date we’ve pioneered innovative support models such as those at the Melcor Welcome Village, Stoney Plain Manor, and others that balance safety, independence, and inclusion. Currently, we support about 125 people labeled as having complex service needs.

Challenges we’re still grappling with Now that more and more citizens labeled with complex service needs are accessing PDD services, service providers have had to learn new ways of safely supporting this group and their unique needs. Due to there often being higher risks with supporting this population, more in depth safety protocols, working alone safeguards, and technology are required to ensure safety of staff, people served, and community. As well, extra training for staff on trauma informed care, FASD, addictions, and mental health are also needed. Unfortunately, the government has been slow to respond to these needs and it has been challenging to receive proper funding for these important resources. In addition, people with complex service needs often have urgent needs (e.g. their life is in danger, they have no place to live). This has created long waitlists for PDD services and often bumped people with developmental disabilities whom the system was originally created to serve to the back of the line within government systems.

There are reviews and explorations by government and service providers to look into how to safely serve both people with complex service needs as well as other Albertans with developmental disabilities in sustainable ways, but more learning is needed. We at Skills Society have been advocating to explore an innovation lab that will involve many community stakeholders in these issues and help to create training resources, toolkits, and policy recommendations around how to safely serve people with complex service needs who need support.

In addition to PDD supports, citizens labeled with complex service needs at different times may need access to supports and resources within other sectors (e.g. housing, health, justice) but are often ineligible because they do not meet specific eligibility criteria within these systems; or services fail to meet their needs as they weren’t originally created to support people with developmental disabilities.

We, alongside people with disabilities and their allies, continue to advocate so that people can gain access to the services and resources they need.

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Disability Justice Movements Although people may have used terms like Disability Justice throughout the 70s until today, in the last 5 to 10 years and popularized through social media, Disability Justice is associated nowadays with particular activist ideas that have their core roots in critical theories, and intersectionality.

One difference from earlier grassroot movements is this newer movement grew mostly out of critical theories within academia in Humanities departments of Universities around the world. More recently these ideas are mixing in community among advocates, activists, and disabled scholars taking up the ideas in community activist circles.

The ideas of current disability justice formed in response to a recognition that disability rights movements are sometimes not enough to bring about the kinds of change people with disabilities need. For example, rights can give people access to spaces, but they cannot guarantee that someone will feel a sense of belonging in that space as a colleague and friend. They recognize that while rights are a really important part to the puzzle, there is also deeper social and cultural work that needs to be done to help to continue to shift attitudes and perceptions around disability.

Disability justice movements are generally anchored in intersectionality, and equity ideas. Equity means giving people whatever they need to thrive even if it is more or less than the next person. This is different from equality where the idea is to give everyone the same treatment.

Disability justice tries to help people recognize that it’s not fair to treat everyone the same, when different marginalized groups are discriminated against differently, and have different privileges and needs. Drawing on intersectionality this movement tries to recognize people as experiencing multiple, often interconnected types of oppression and believes it beneficial to have all justice(equity) seeking groups work together for justice for all. Disability justice movements also mix in a number of different theories and

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ideas, including ableism and disablism, to help explain why people with disabilities continue to face discrimination, prejudice, and poor treatment. Ableism and disablism are terms used to describe the systematic discrimination of people with disabilities. Ableism and disablism can help us see the ways the world has been built for people who do not experience disability and is therefore often exclusionary to people with disabilities. Ableism can help point to, often hidden, ways people with disabilities are disadvantaged.

Challenges we’re still grappling with: Many of the theories talked about within this movement (e.g. intersectionality and ableism) are complex and can be difficult for people with intellectual disabilities to understand and also difficult to understand how they might be relevant to practice and things happening on the ground in support of people with disabilities. Sometimes disability justice approaches can also lean towards shaming call-out culture that do not create space for people who are maybe at the start of their learning journey about disability rights to learn and grow. There is also a tension in that when asking all equity seeking groups to come together and work together, it can end up leaving out important immediate issues of specific groups. It is quite hard to get people to work on one cause let alone all causes in unison. There can also be a challenge with this movement around activists squashing individual ideas and perspectives in favor of representing the collective good of the whole. This can cause conflict, in-fighting among activists and ironically - suppression of unique voices and perspectives. It is still early days with this movement and lots being explored and worked out.

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Good Enough Isn’t Enough - Not Settling, Always Striving for the Good Life The common theme in all disability rights movements has been families, self-advocates, front line and system leaders who have held a deep belief that good enough isn’t enough - there is a conviction in these movements that we all have a duty to not become complacent or settle. We have to do everything possible to help people have their best lives possible like any other citizen is afforded in society today.

Although we have just started to articulate what this energy is that unites us (see 2022 AGM report), we recognize this conviction of not settling has been there in all disability rights and justice movements from the beginning.

With our beautiful vision, values, and guiding principles at Skills remember to continuously ask yourself, have you settled for good enough? Have you done enough to help remove barriers? Have you and a team gotten creative enough to help people find their gifts, strengths and ways to meaningfully contribute them in unique ways in the community? Have we settled for good enough in supporting belonging of people? Have we done enough to help people discover and sustain real friendships and supports in community?

Challenges we’re grappling with: Figuring out how to continuously spark that conviction in yourself, your team(s) and movements you contribute to is key in being a stellar ally of people with disabilities we serve. As much as we would like to mandate a conviction like this to never settle, it’s really up to you and whether you find it and bring it to life everyday in your support of people.

People we serve, whether directly requesting or not- are asking all of us by nature of being supported by Skills to not become complacent nor settle. We are all being called to keep striving to support people we serve to make life the best that’s possible - and what’s possible can often be expanded by people who have a conviction that the good life is for everyone no matter what.

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