DDA Chats with Disability Advocate Spencer van Vloten

Encouraging Abilities Podcast

Success will come when advocating and fostering change in prevailing attitudes when it comes to disabilities. In this episode of DDA's Encouraging Abilities podcast, we chat with well-known disability advocate Spencer van Vloten who prides himself on being a champion for the disability community.

TRANSCRIPT

DDA Chats with Disability Advocate Spencer van Vloten

00:06

So welcome to another DDA Encouraging Abilities podcast. I'm your host, DDA Communications Manager, Evan Kelly. Today we're joined by Spencer Van Vlaten. Now, Spencer is a very well-known and outspoken member of the disability community.

00:20

He's the editor of BCDisability.com, a chair of Community Living BC in the Vancouver Council. He's a nationally published writer and advocate who has written or talked, rallied about countless issues that affect the disability community here and abroad. He is passionate about community living and social policy. He has been awarded the Medal of Good Citizenship by the province of BC, the City of Vancouver Excellence Award, as well as being named

00:50

the year, not to mention he's very active online on Twitter where we often connect. So thanks for joining us today Spencer, really nice to have you here. Yeah thanks Evan, I really appreciate the opportunity. And I have to add that it's you know in the days of post-COVID it's nice to have someone in the studio for the first time utilizing the equipment that we have here. Absolutely. So right off the top just tell us a little bit about yourself, like why are you such an advocate in the disability community?

01:17

Well, I'm from Vancouver and I also spent some time in Lannley growing up. I first became interested in advocacy as a kid. I have a cousin with cerebral palsy who is a few years older than me. And so I saw growing up the barriers they faced. And that led me to want to work within the disability field when I got older. And so I've done that with organizations like Easter Seals and Community Living BC.

01:48

As I grew up, I also began to notice more of the interconnections between issues. So, that disability justice isn't just about disability, but it also involves issues like housing and poverty reduction. Housing also involves issues like mental health. And so I became very interested in the way so many things in our society and so many of the outcomes we want to see are linked.

02:17

And so that led to a sort of general issue in community affairs. And at the moment, as you mentioned, I run bcdisability.com. I also run umebc.ca. I love writing on a range of different policy issues out there. And yeah, I just have a passion for inclusive communities, and I hope that's reflected in my work.

02:43

your own education has gone into that route as well? Oh absolutely, so I studied, well in university I studied political science. I was particularly interested in how to use you know advocacy within political channels to to achieve the outcomes we want to see and that's become a big focus of my work and I think I think ultimately you know a lot of the things that advocates are pushing for.

03:12

are ultimately achieved through political ends. We want our policy makers and our lawmakers to enact a certain bill that will bring into effect the candidate disability benefit or more support for youth with Down syndrome. And so my studies of political science are really linked to what I do now. I also studied sort of general studies in issues of equity.

03:40

and how to create inclusive communities. And so I'm really pleased that I was able to actually study in an area that I not only had a great interest in, but I've been able to work in as well. Because so many people, they do their studies in university, and they go off, and they happen to get a good job, but it's not related at all to what they studied. And so thankfully, I've been able to incorporate my education with my work. That's good. I mean, that's reaching the goal. Now just sort of jumping right into.

04:09

policy and things. I mean, there's a lot of things going on in Vancouver right now. There's a lot of housing issues. There's...

04:17

substance abuse issues, how are we doing in terms of, in those fields in your mind, in terms of even accessibility? Well, on accessibility, I think we're thinking more about accessibility lately, which is a good thing. We had our first ever, ever provincial accessibility legislation brought in just not too long ago.

04:47

been working on its accessibility strategy and is about to go through phase two of the consultations for that. Yeah, we're involved in that as well. Yeah, absolutely. And I know that that process has been, there's been great involvement in consultation with the disability community in that. So that's good. We're definitely thinking about accessibility. And I think it's gone beyond just, you know, physical spaces.

05:15

but also thinking more about technology, information, education, and attitudes. And I actually spoke recently with a Japanese accessibility scholar, Maiko Sugawara, and she was so impressed when she came here with just how, I guess, the attitudes here and the support, the general support for people with disabilities. But that said, that's a good of it.

05:45

The problem is that people with disabilities, whether they be physical, developmental, or both, are still facing a lot of barriers. And I know actually of cases with some well-known disability organizations, not the DDA, but where they actually themselves had issues with accessibility in their buildings. And so you can see even organizations that do great work for people with disabilities have accessibility issues.

06:15

When people think about accessibility these days, it's still not automatic. It's still not embedded in just our thought process. It's kind of more of an afterthought, something we have to will ourselves to think about. And we're doing that and that's a start, but I think we need to take that to another level, or else we're just gonna keep overlooking things. Well, yeah, absolutely. And it's the one sort of concept we're trying to push and other organizations, associations are trying to push

06:46

developers is this idea of universal code rather than getting something to a building code which can make something somewhat accessible. It might have a ramp or something like that, but if let's say you go up to the 13th floor or whatever and there's a fire, there's nothing in that code that shows how to get someone in a wheelchair necessarily out of that building. So it's still somewhat, so when we build something, the code...

07:13

it doesn't mean it's accessible to everybody. We really need to include the disability community to understand so that the developers, the builders, policymakers understand that.

07:27

things have to be done with their specific input. Yeah, and you know, when we make things accessible, it's not just helping people with disabilities, it's helping mothers who may be pregnant or may have to have a stroller they're pushing around, it's helping seniors. Really everyone benefits, there's no one who is worse off because of greater accessibility. And so, yeah, there still needs to be greater progress in the practical side of things.

07:56

and uh... you know i think things are in the right direction but there's still many steps to be taken and you know it doesn't even have to cost that much to make something more accessible you know putting in putting in a uh... door handle that there's a lever rather than and on makes that absolutely people to access

08:15

So you recently wrote about how we're falling short of adequate support for children of Down's Syndrome. How can individuals and organizations like DDA push for better support and resources for British Columbians with developmental disabilities like Down's Syndrome? Well, I think it's, you know, there's a phrase, squeaky wheel gets the grease, and I think that's often very true when it comes to advocacy. It's crucial to apply constant pressure on the people who make

08:45

decisions over who gets what resources. So it's important that we are always raising our voices, whether that's through social media, through talking to friends and family, through organizing campaigns, through donating to an advocacy group that we think does good work. There needs to be constant ongoing pressure and it's so important.

09:12

that this is consistent and that it doesn't stop because if you can put all the pressure on government but then if you let up they realize that they just have to hold out and kind of weather the storm for a bit and then you know the thing the thing the case that I want to look at is a good example is you look at the decision the government had regarding the the hubs for children.

09:39

uh... you know with uh... you know complex needs uh... they were going to move to this hub model but then the like mostly the the autism community and i don't know how to get there's so much pushback and they organized so well and they just they kept their voices up they were doing rallies and having a fence they were in the media bringing letters to editors they were making appointments with their mla and they just they did not let up

10:07

and eventually the government decided to not go forward with this plan or to put a pause on it. And that's an example of effective advocacy. It's intense, it's consistent, and it's working across multiple channels. And ultimately as well, a key part of that is working together and cooperating with like-minded advocates. You know, we can do so much more together than we can when we're fractured. And I think

10:38

That's a crucial element as well. So I just, yeah, saying to anyone out there who wants to advocate more for people with developmental disabilities, you know, raise awareness, educate people, get involved and don't give up because change, it may not happen overnight, but the more you persist, the better the chance that, you know, you get what you're looking for. Yeah.

11:00

I think, you're right, I mean, the way the government sort of backed down on that plan a little bit, I think they're moving forward on some of it, but I think it might have, it came right down when David Eby took over as well, so I think that might have helped their cause a little bit. Yeah, it was also, the timing was a bit fortuitous, I guess, because David Eby came into power and he had the chance to frame this as, you know, a fresh start.

11:28

uh... and it's easier to to to change a policy if you're coming in new than if you were there when it was brought in and have to admit there was in a good idea so uh... but still i think the advocacy was an important part of uh... you know getting the government to uh... to make those uh... to put put put a hold on it for now now from your perspective how does bc stock up compared to other provinces in terms of disabilities from a financial perspective uh...

11:57

It's important to note at the outset that pretty much all the provinces are doing terrible. Northwest Territories is the only province or territory that pays over $2,000 a month in provincial disability support. I believe Yukon is next with around $1,700 and it just keeps going down from there. I believe overall BC has about like the fourth highest provincial disability rate.

12:27

which sounds good but it's still far below the poverty line and as a percentage of income people with disabilities in bc only make about seventy percent of what people without disabilities in bc makes which is below the national average so i don't think we're doing that good uh... we also need a lot more support for uh... adults with complex uh... needs to live independently in their communities

12:55

We have the CSEL program, which could be such a powerful program and could do this, but it's been left to run dry. We don't support youth with Down syndrome like we should. And you know what frustrates me is that so much of the decision to keep certain policies in place is just simply based on what other provinces do.

13:19

So, for example, when I talked with the previous minister of social development and poverty reduction regarding the issue of clawing back someone's support because of what their spouse makes, it was basically intimated to me that, well, all the other provinces have the same policy too, therefore it's okay and we're going to keep doing it. The thing is, often all other provinces have poor policies as well.

13:47

and we really need to step up, BC needs to be bolder and take the lead on a lot of these disability issues. If you look recently, BC decided to make prescription contraception free. I believe it was the first province in Canada to do so. And about a week after, Manitoba then announced they're going to follow up with legislation to do the same. And so it sets up a domino effect when one province steps up and takes the lead.

14:16

So BC right now isn't doing that. It needs to do that because so many people here with disabilities are falling behind. And it's not just because they need money. I mean, the cost of living here is astronomical. Cost of living is crazy. Just like Vancouver, for example, it can cost over $3,000 for a two-bedroom apartment. Our housing market in Vancouver, the prices were already very high. And yet they've gone up.

14:46

twice the national average over the last year or so. What I really want to see as well, I was focusing on provincial disability rates, but another important element when it comes to making housing affordable and accessible for people with disabilities is more federal government support. Federal government used to, prior to the 1990s, used to do far more to build social housing and low-cost housing in Canada.

15:14

and then the 1990s came and that really dropped off and as a result we have a major housing shortage here in BC. The housing shortage is even greater for people with disabilities because a lot of the tiny amount of what is available isn't accessible. So that needs to change and I really think, you know, I could, someone could frame it as saying well BC does better than other provinces but...

15:43

I think we need to look at it is BC and other provinces, the other provinces don't do it well at all. And so there's so much to advocate for here in BC and that's why the advocacy community is very active here.

15:59

And I think a lot of the general public don't quite understand. Like, it's not just, we're not just talking about a cost of living for the disability community because there are so many more expenses to being disabled. You might need, you know, accessible technology. I was talking to one of the VPs at the Rick Hansen Foundation and his wheelchair is $38,000. Yep. That's a car. Exactly. You know? And not to mention if he's going to get a car, it's got to be something that's like lift equipped.

16:29

be able to get into and draw it. Yeah, I know someone who, they have a specialized chair, they have cerebral palsy. Their chair basically broke down and they need $10,000 to repair it. That's not something that you're facing if you don't have a disability. There's all sorts of expenses like that. So you face greater expenses, lower income, trying to do this while living in, you know.

16:56

some of the most expensive cities in the world and it's a tough road. Yeah, that's pretty crazy. But now we're talking, we can switch that to Bill C-22, which I think is in its third reading in the Senate or something. Yeah, it's in the Senate. That might be a good thing. I haven't really gotten down to many of the details in terms of

17:22

you know what that benefit is going to look like. I don't know what you've heard. So yeah, Bill C-22 is enabling legislation so it basically will set out a framework from which they can fill in the details. So there's limited information out there in terms of what we know about what it will look like. There's some important elements that I think absolutely must be part of it though. It must be...

17:48

something that people can receive whether they're on provincial or federal disability assistance. It shouldn't matter which one they're on. It should be something that's, it should be a meaningful amount of money, not a piddly like $50 extra a month, not to say that couldn't help, but it should be, I think, at least a few hundred. I mean, during the pandemic, I think...

18:15

the three hundred dollars extra that some people with disabilities received each month it did make a difference and three hundred dollars back then is about three fifty to four hundred now so i hope it's at least that much uh... so it needs to at least be a meaningful amount of money uh... and it needs to also not be uh... administratively burdensome benefits to access uh... because you know

18:40

Navigating government systems and all the paperwork and what you need to do to get this benefit or that can be a hassle. So those are three elements I really think are needed when they start to flesh out the details. And absolutely, I cannot stress enough that provinces should not claw any of this back from provincial disability assistance. We see that far too often. Someone's found a way to get a bit more money.

19:06

and the province will just knock it off whatever else they're already getting. And it just sets people who are already struggling even further back. Yeah, absolutely. That's, it's all come comes down to the support. And when people have those supports in place, they can live and they can contribute. So that's where it really, what it comes down to. Yeah. Um, Maid, I don't know if you want to talk about this. Yeah. This is a very, very touchy subject. I, yeah, I'll talk about Maid for sure. You know, I've actually read in a lot about Maid and interviewed, uh,

19:35

several people who have pursued Maid, and you know, Maid does have a place in... I think so too. It does have a place for sure in very specific circumstances. There are cases where people simply have, they suffer tremendously and they have no option left to improve their life. That is a case where you look at, you know, where you look at might consider Maid and you might say that that's acceptable if someone pursues that.

20:04

The thing is though, the problem is that we are often enabling people to kill themselves and doing more to help people kill themselves than we are to help them get the support they need to live happy, healthy lives. So you know, we need bolder, faster action to address poverty. We need greater programs which help.

20:31

People with complex disabilities live in their communities. We need more affordable housing. And we need to be able to look at ourselves and say, have we done everything we can to help this person live a good life? Because if we haven't, then too many people out there are going to pursue maid when they're really dying of poverty and not because they have some incurable.

21:00

uh... intractable pain or illness suffering from so i've talked to people who like uh... madeline and scarlet rose i've done stories about them who there's treatments out there that could help them you know live good lives but they just don't have the the resources to afford it and this is when you know becomes troublesome because you get people like them who are then

21:30

So that's a bit of the issue I have with it. We, I think, when we have legislation like made and when we have assisted suicide, we need to ensure that we've done all we can to help people live good lives before we make that an option for them. And so I don't think that's happening yet. And yeah, it is a contentious issue for sure. But.

21:58

I know a lot of people will have different opinions on that, but I really think that it comes down to doing more to help people live good lives. Absolutely. What I'm seeing is, you know, I sort of dig into the issue of medical assistance and dying, is some of the optics, because I'll read a story from the BBC or something that's overseas, and the headlines are literally, Canada is killing poor people. Yeah. It's almost...

22:25

It's almost like they're saying that Canada has gotten eugenics back in place. Yeah, and you know, there's lots of... Canada's getting a bit of a reputation from that, and this idea that we are... You know, Justin Trudeau kills disabled people. You know, that's obviously... they exaggerate for the headlines. There's a lot more to the story. But you know, I have talked with many disabled people who do see it as eugenics.

22:53

And because, you know, if the government hasn't helped them get the treatment they need or help them, you know, find affordable housing, but they are helping them kill themselves, well, I mean, it's totally understandable how someone would not feel good about the government in that situation. So it's difficult because you have to balance the fact that May does have a place in certain cases with the fact that...

23:22

In other cases, it can be a dangerous thing because people out there could still live good lives just if they had the support they need and they don't at the moment. So, yeah, and Canada's reputation I think has taken a hit as a result. Now, what do you think about, I mean, we're talking a lot about accessibility and finances and how like...

23:45

maybe throwing money at problems helps them go away. I think it does to a degree, but we're still at the same time dealing with other prevailing attitudes when it comes to disabilities or developmental disabilities. How do we foster that positivity or that change within the community at large? Well, I think education is such a big thing, for one. I've been in the CLBC Community Council that...

24:14

you know, I'm involved with. We hold and have held community events where we've invited policy makers, local MLAs and counselors and MPs, and, you know, several of them have come and they haven't had any idea that the community living movement exists. They haven't had any idea about the issues affecting people with developmental disabilities. They never really had any interaction before with people with developmental disabilities. I think the biggest key to changing attitudes is...

24:43

educating people and also having just coming together as a community, having events, you know, celebrate community inclusion and where people with disabilities and people without disabilities are interacting. And then you see, you know, this person may have Down syndrome but they're still funny and they're great to be around, they're a kind person, they have wants and needs and goals and wishes, they have strengths and weaknesses. When you don't have that type of direct interaction, I think

25:13

people are more likely just to see people based on their disability and just to think oh that's a disabled person, that's not like Kevin and Kevin who loves watching you know uh Marvel movies and stuff. So I think education is key, just community involvement and inclusion is key as part of that too. Because it's true you know money can do a lot but it can only do so much and I think we need to um.

25:41

really do more to get people together in the same room and to bring people together. And that's something that changed my life too when I was younger, you know, just having that interaction with my cousin. You know, I saw him just as my cousin first and not, you know, the disabled guy, the guy in the wheelchair who everyone else saw. And so I think that is something I'd really emphasize.

26:06

Yeah, and to your point, I haven't been working for DDA forever, and I don't have a lived experience when it comes to disability, so after being here for a few years, it is that attitude of they're not the disability, they're people before that. I've taken 100 clients to a Whitecaps game, and they're having an amazing time. Exactly.

26:30

you know if we win when when the elections are here we get them on voting they understand the issues they know what bothers them they know what sir what needs to change yeah and you know there's so many ways people can be similar in ways they can be different disabilities just one way you know different disabilities is just one thing uh... you know this person may have a disability and i might not have a disability but look we're both interested in the same movies the same sports we have a similar sense of humor it far outweighs the fact that you know

26:59

one person might have a disability and the other doesn't and i think we read we really need to get past which was still acknowledging you know that uh... disability does change someone's experience in society we really need to try to do our best to to move beyond that and uh... just to see people as humans absolutely and it doesn't you know i think disability doesn't have to limit exactly like

27:28

You seem to have a totally switching gears. You got a keen interest in World War II, I guess. You wrote a piece about Vimy Ridge. Yeah. Why did you write that piece? Well, you know, I've always had a general interest in war, particularly the down in the trenches combat aspect of it. And it's not because I'm some sort of lover of violence. It's actually because I'm very interested in the ways that people can persevere.

27:56

and work together to overcome the most extreme experiences and the most extreme circumstances that you could possibly find yourself in. So with a situation like Vimy Ridge, you had people from different areas of Canada, never met each other before, forced into the most pressing, challenging situation you could really find yourself in. And they found a way to persevere.

28:25

and to succeed in the face of great adversity. And I look at that as an example of, you know, around the time when I wrote that piece on Vimy Ridge, Canada was going through a period where there was a lot of division and a lot of talk about how polarized we were becoming. And yet I look at an example of like Vimy Ridge and it shows that when we come together and work together, you know.

28:49

our ability to thrive off one another and to succeed as a team far outweighs any differences we have. And so applying that to advocacy, you know, I really always believe that we are more powerful together. And that's why, you know, I try to collaborate with everyone I can. I try to be supportive of everyone out there. And I just really encourage people, you know, work together.

29:13

don't be divisive, we're in this together and are stronger together. And I just look at Vimy Ridge as an example of that and something we can learn a lesson from even all these years later. I think that's well said. What more do you need to say? Anything else to add today about disabilities in general and advocacy? I just want to really stress the need if you're going to be an advocate.

29:41

and you're feeling intimidated at the idea of going to talk to an MLA or writing a letter to someone or being part of a campaign, it can just start with speaking up to your family and friends. It can start with speaking out to your colleagues or telling them about an issue and that people with developmental disabilities are still excluded in a lot of ways in BC. It doesn't have to be some grand thing.

30:11

And just, you know, persist because when we keep the pressure on, that's when we make the biggest difference. And just one more thing I want to say, and I know DDA is involved with this too, to the listeners in Vancouver, the second phase of the city's accessibility consultations will be held in May. I think it's May 27th or so. But if that's something you're interested in.

30:39

in participating in it's another way you can be an advocate so uh... if you look online there will be more information about that soon and uh... encourage you to participate and you can also just be a keyboard warrior how do people find exactly yeah be a keyboard warrior go to if you want to check uh... my if you want to see examples of what i've written you can go to spencer v dot c a uh... you can also go to spencer

31:04

And you can also, if you don't have a Twitter or an Instagram or Facebook, think of starting one and think of speaking out about the issues you care about. Because your opinion does matter and it can influence what happens. So speak out and make yourself known. Your opinion counts. And I think just one final point, which I've made this point on many podcasts, is that we're not really just speaking necessarily for the disability community.

31:32

we're speaking for everyone because at some point in our lives, whether cognitive or physical, we're going to need assistance, we're going to need support, we might need that funding or policy in place. Exactly. This is for everybody. Exactly, it's for everyone. Inclusion benefits everyone, accessibility benefits everyone. No one loses because of this. That's why I think it's so important, even if you don't have a disability, to be an ally and to support greater community inclusion.

32:03

You have been listening to DDA's Encouraging Abilities podcast. Our guest today has been Spencer Van Vlaaten, as you can see, is a great and outspoken advocate for the disability community. Spencer, thanks for joining us today. Thanks so much. I really appreciate it, Evan.