International agreement on the rights of disabled people

 

Their Story: Self-Advocate Leadership Network

SALN members stand together, smiling for a group photo
The Self-Advocate Leadership Network (photo: SALN BC)
By Spencer van Vloten
BC Disability
September 18th, 2021
 

The Self-Advocate Leadership Network (SALN) has been at the forefront of advocacy for British Columbians with intellectual disabilities, bringing together leaders from across the province to to make a difference in a time of crisis.

This is the story of a group that began as a vision shared by 2 friends, and bloomed into a powerful force for change.

 

BETTER ADVOCACY

 

Alex Magnussen and Michael McLellan started having the conversation in 2017. Frustrated by the lack of coordination among self-advocacy groups across the province, they shared a vision of creating a unified network of leaders who would combine their skills, experience, and passion to do better advocacy for British Columbians with intellectual disabilities. After exchanging ideas and talking them through for a while, Alex and Michael started working with a team of advisors to turn the dream into the reality. They searched throughout the province and began recruiting a mix of BC’s top leaders in the self-advocacy movement, each of whom would bring their own skills and experiences to the group.There were highly experienced self-advocacy veterans like Dave and Lorie Sheritt of Burnaby, and Richmond’s Jo-Anne Gauthier, each of whom had spent decades advocating for the community inclusion and empowerment of persons with intellectual disabilities. There was Bryce Schaufelberger, a computer whiz from Mission who founded the world’s biggest website for self-advocates, SelfAdvocateNet,

While Nanaimo’s Kara Anderson brought her sharp eye for detail.

 

And there was representation from a diverse mix of self-advocacy groups, some with a provincial focus, like BC People First, others with more of a local focus, like Self-Advocates of Semiahmoo.  In 2019, with the team assembled and supported by allies in the community living movement, Michael and Alex launched the Self-Advocate Leadership Network. The dream was now a reality and the group was eager to get started, but developments around the the world would force them into action faster than they’d ever expected.

 

NO MORE DYING ALONE

 

Almost as soon as SALN held their first meeting and created their mission and vision statements, the pandemic hit, creating an urgent need for advocates to step up. Instead of finding themselves overwhelmed like many other organizations, SALN took off running and hit their stride just as things were becoming most difficult in BC. They met twice a week, every Tuesday and Thursday, working to do all they could to support their communities and other self-advocates. An important part of this was creating a website with news sheets that provided essential information about how to stay safe and find supports during the pandemic. SALN also held online events to help keep British Columbians with disabilities connected during lockdown. But the death of Ariis Knight would lead SALN to make their biggest impact.

Ariis Knight died alone at Peace Arch Hospital. SALN was determined not to let such a tragedy happen again (photo: Peace Arch News)

 

Disturbed by the story of Knight, a woman with intellectual disabilities who’d been left to die on her own in a White Rock hospital, SALN began their push to change the province’s essential visitor policy. They partnered with organizations throughout BC, lobbying government and raising awareness among the public.  They spoke out and explained the importance of supportive decision making, highlighting the communication barriers that persons with intellectual disabilities face when left unsupported in the medical system. And their effort paid off: the provincial government revised the essential visitor policy, allowing persons with intellectual disabilities to be visited by loved ones and supporters while in hospital or care homes. It was a big victory for SALN, but their work was just starting.

A SERIOUS TIME – BUT STILL A FUN ONE

With the pandemic grinding on, SALN has continued to make it a focus of their advocacy, but their impact is being felt in other ways too. They ran a campaign to end use of the “R” word – retard- after it was used by a public representative in Chilliwack, and they’ve created a shift in how Community Living BC refers to the people they serve: ‘clients’ was the previously used term, but that isn’t so popular among self-advocates.

Michaela Robinson and Krista Milne from SALN and Self-Advocates of Semiahmoo discuss the importance of language (video: UNITI)
 

They also recently held a province-wide picnic and water balloon fight with community living groups in Terrace, Penticton, Burnaby, Surrey, and Mission, bringing people together and raising awareness about inclusion. In true SALN style, they were hard at work the very next day, developing their new strategic plan. While much of SALN’s success lies in the diverse skillset of its members and supporters, as well as the mentoring and teaching they provide to each other, Michael says there’s another key to their rapid rise. “We’re always having fun. Our meetings are silly, wacky, smart-alecky, and we make sure to have happy hours together too.” “It’s serious and we’re there to get work done, but we want to have a good time while we do it.”

SALN members and supporters enjoying a meeting (photo: CLBC)
 

And for Michael, whose vision back in 2017 has grown rapidly before his eyes, it’s changed his own life. “It’s made a big impact on me. I’ve gotten to know some really cool people and now have mentors of my own. I’ve never had that before and it’s helped me grow so much.”

Spencer van Vloten is the editor of BC Disability.

To get in touch, send an email to spencer@bcdisability.com!

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Michael McLellan: Self-Advocacy Is Everything For Me

This Story is on BC Disability website report from Spencer Van Vloten is editor for written this

Michael McLellan’s passion is self-advocacy (photo: Inclusion BC)

By Spencer van Vloten

BC Disability

August 27th, 2021

 

Co-founder of the Self Advocate Leadership Network (SALN), Nanaimo’s Michael McLellan is one of BC’s most prominent self-advocates, spending decades working to ensure that British Columbians with intellectual disabilities are empowered as community leaders.We talked with Michael about his passion for advocacy, his top priority for the 2021 election, and an exciting new project he’s working on with Inclusion BC.

LEARN MORE: SELF ADVOCATE LEADERSHIP NETWORK

How did you get started in self-advocacy?

Michael: My introduction to self-advocacy was the 2000 Inclusion BC conference, which means I’ve been involved in the self-advocacy movement for over 20 years. Getting as far as I have, onto the Inclusion BC board and People First of Canada board, doing small jobs and sometimes big jobs, I love the work; it’s in my blood and I’ll never stop. Self-advocacy is everything for me and I’ve come along in a lot of ways, learning so many things from so many people.

What do you consider the highlights of your 20+ years in self-advocacy?

Michael: One of the big ones was co-founding SALN. We formed just before the pandemic started, and when it did start it forced us to work fast. We’ve worked on many issues during the pandemic, but perhaps our biggest achievement was helping to get the essential visitor policy changed, so that families could once again see their loved ones who were in care facilities and hospitals.SALN’s work has spread internationally, and we’ve given presentations to people from as far as Australia and Korea.

Michael’s made a big impact in his 20+ years of self-advocacy. Here he is accepting an award from Anita Holland for his role in creating welcoming communities (photo: Community Living BC)

 

 

What issues do you want the 2021 election candidates to address?

Michael: Poverty’s the big thing. People with disabilities need a minimum of $2200 a month, as has been recommended by Inclusion Canada. I support this and we want it without any claw backs if you work or get married. Claw backs are always a big issue for self-advocates.

 

Poverty’s the big thing. People with disabilities need a minimum of $2200 a month

Affordable, accessible, and inclusive housing must be addressed too. Housing is so expensive and people with disabilities have so little to spend on it, then you add in that many places aren’t even accessible, and it’s next to impossible to find something. Accessible and affordable and inclusive childcare is another concern.

What thoughts do you have on the election being called?

Michael: Many people are asking ‘why now?’, and that’s not just people with disabilities; ‘why now?’ is coming from almost all the people I know.We’re still in the middle of a pandemic that we’re trying to control, so why are they calling it now? That’s my question.That said, I’ve always believed that if you don’t vote you can’t complain, so I’ll still be voting.

What barriers to voting do self-advocates experience?

Michael: One barrier would automatically be – do you understand the issues and how to vote, and is your support team going to explain it to you. Having supporters to encourage and help you along the way is very important.Another barrier, for people with vision limitations like me, is that it can be hard to vote in-person. The Braille ballots aren’t of a high quality and often do no good. Braille ballots aren’t of a high quality and often do no good Having voting by mail as an option is really important too for accessibility, especially when there’s a pandemic.

Aside from the election, what issues are SALN focused on now?

Michael: Right now, the main focus is our Community Living BC grant. We hold events to help self-advocates learn and stay connected to each other during the pandemic, and we continue to make news sheets to keep self-advocates informed about issues in the community.

Helping others learn and build their skills has been a focus for Michael. Here he is giving a presentation with fellow self-advocate David Johnston (photo: Self-Advocates of Semiahmoo)

Another big issue for us is affordable, accessible, and inclusive housing. Recently the Surrey city council rejected Harmony, which is part of UNITI’s affordable, accessible, and inclusive housing initiative. The council voted 5-3 against it, but none of the 5 who voted against gave their reasons, and we want to know why not.

How are self-advocates reacting to recently announced pandemic restrictions?

Michael: Some people have taken it hard, some have taken in stride. Let me say, if you don’t have your shot, please go get your shot; if you want to do the stuff you enjoy in the community, get your shot. You’ll be able to do that. You’ll be able to go to events, conferences, sports games.Also, hold your head up, we’ll get through this, it may feel like a step backward, but it’s something we need to stay safe.

What’s your advice for self-advocates who want to get involved with helping their communities like you have?

Michael: The question is ‘do you have a self-advocate group in your community?’ That group can take a take local focus, a provincial focus, or a national focus, but the first thing you need is to see if you actually have a group of self-advocates and supporters in your area. If you do, reach out and find out how to participate with them.

What’s next for you Michael?

Michael: Chairing SALN will continue to be a big thing for me.I’m also on the board of Inclusion BC, and we just had a meeting to start planning the first ever Self-Advocate Leadership Institute in BC, led by self advocates, for self advocates, with the support of Inclusion BC. It will help self-advocates develop their leadership skills and confidence.We just had a meeting to start planning the first ever Self-Advocate Leadership Institute in BCI’m co-chair of a learning community of person-centered practices as well. Along with SALN’s Kara Anderson, I teach workshops on people planning together, and it’s another way for self-advocates to help other self-advocates build their skills to advocate.Most of all, I’ll continue to pursue my passion, and that’s advocacy.

Spencer van Vloten is the editor of BC Disability.
To get in touch, send an email to spencer@bcdisability.com!

This on website called BC Disability you can go to link see this story here

Jo-Anne Gauthier: The People’s President

 

Joe-Anne Gauthier is always ready to advocate (photo: Jo-Anne Gauthier)

By Spencer van Vloten

BC Disability

August 31st, 2021

President of BC People First and member of the Self-Advocate Leadership Network, Jo-Anne Gauthier is a fearless speaker and leader in BC’s self-advocacy movement. We talked with Jo-Anne about why she’s driven to make a difference, her advice for beginners in self-advocacy, and the ambitious plans she has for the future.

How did you get started in self-advocacy?

Jo-Anne: It happened around 25 years ago. I was living in Cranbrook, and a friend of mine was on the Inclusion BC board and encouraged me to get involved.I joined a self-advocacy group in Cranbrook, then with my husband Mike I became a member of BC People First, and together we worked to make Cranbrook a more welcoming place for persons with diverse abilities. We successfully advocated to have the city install mobility ramps, we helped get more wheelchair lifts, we got the city to fix sidewalks, and also to install more automatic doors.It wasn’t just about accessibility though. Helping people, in general, was our goal, and one of the other things we did was cook hundreds of meals for people living in shelters. The ball kept rolling and I’ve been able to participate in many different ways over the years.

What motivates you to be so busy as a leader in the self-advocacy movement?

Jo-Anne: Because I’ve been there, I know how others feel when they face exclusion, and I’ve always been a person who wants to help. There’s always someone who’s worse off than me. I’ve always had that passion to do whatever I could do to help. Maybe I can’t fix the whole world, but I can help someone in some way, and that motivates me to keep going.

What tips would you give to people starting in self-advocacy?

Jo-Anne: Talk to as many people as you can. Go to the city hall, meet the mayor, ask the people you meet what they’re doing to include people with diverse abilities. Join a self-advocacy group like BC People First, and surround yourself with people who support your dreams and aren’t going to make you set those aside.

 
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Speaking is one of Jo-Anne’s passions, and she’s eager to return to it following the pandemic (photos: Jo-Anne Gauthier; Spencer van Vloten)

To all self-advocates, remember that even when things seem hard, keep on fighting, keep on standing up for yourself and for others. It’s like my favorite saying: ‘never give up. When I was born they said I wouldn’t walk or talk, but now I do both. I have a loving husband of 35 years and 2 amazing grown daughters. You can do things people say you can’t. My own tip to myself is to speak as clearly as I can so people understand me. And if they don’t want to listen, they can go somewhere else!

Tell readers about BC People First and what the group is focused on

Jo-Anne: The self-advocacy movement’s always fighting for plain language, regardless of whether it’s BC People First or other advocacy groups. Information needs to be accessible to people with diverse abilities. We also want to see youth more active in self-advocacy. BC People First has a youth group, because new blood helps strengthen the self-advocacy movement, and being involved in advocacy helps youth prepare for issues they’ll face when they transition into adulthood. And we always want to hear people’s stories. To hear the experiences and interests and ideas of self-advocates. It all contributes to the movement, and it reminds people that, while we’re all in this together as self-advocates, we’re also all unique.

 
Jo-Anne with BC People First leaders (photo: Jo-Anne Gauthier)
 

There’s an election coming up. What are you asking of candidates?

Jo-Anne: Housing’s my top thing right now. There aren’t enough wheelchair-accessible apartments, and that’s why Mike and I are being forced to move out of Richmond. We need more housing that’s affordable and accessible at all levels, from single apartments to family apartments, for people in wheelchairs or with other disabilities. To make this affordable people on disability should also get extra financial support, so they can spend more on housing. We need more housing that’s affordable and accessible at all levels 2nd priority is that people with disabilities should get more help with education. I never had a chance to complete school and had to learn on my own because the government closed so many of the schools for students with disabilities and learning issues. And across society, there must be a change in how people with disabilities are treated. It doesn’t matter if someone can’t see or hear, or if they wear glasses, it shouldn’t matter. Across society, there must be a change in how people with disabilities are treated where all people, we’ve all got problems, and we should all be treated equally.

I hear that BC People First members do some excellent cooking?

Jo-Anne: We’re working on a BC People First cookbook. My recipe will be Japanese chicken, and there will be a lot of other tasty recipes. One of my favorites is Swedish dumplings! Until then, you can always get a BC People First shirt. One day I was wearing my ‘Nothing About Us Without Us’ hoodie and someone stopped me to ask what it meant. I explained it to him, and he was so impressed that he’s become a supporter and even donated a few bikes for us to raffle.

Jo-Anne shows off attention-grabbing BC People First gear (photo: BC People First)
 

What’s next for you?

Jo-Anne: I’d like to go out there and do my speaking and attend events in person again. I want to be involved in everything – housing, poverty, accessibility, rallies, conferences -everything. It’s a goal of mine to be on the People First of Canada board as well. For many years I’ve also wanted to write a book, a biographical book about what I’ve been through that helps others. Once we move I’m going to start working on it, and somehow, someday it will happen.

Spencer van Vloten is the editor of BC Disability.
To get in touch, send an email to spencer@bcdisability.com!
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