In this episode of On Our Terms, host Áine Kelly-Costello chats to Clementine Willow Doevendans, a disabled and neurodivergent Dutch activist and poet. We talk fighting systemic oppression and understanding sanism, and you might just get treated to a poem at the end.
In this episode of On Our Terms, host Áine Kelly-Costello chats to Clementine Willow Doevendans, a disabled and neurodivergent Dutch activist and poet. We talk fighting systemic oppression and understanding sanism, and you might just get treated to a poem at the end.
Clementine
We are so dependent on the government, as disabled people. The rules apply to us, like, heavier.
[Acoustic guitar music, and singing - lyrics: "I've got a little story, to tell you. Just some stories, about me, about you". Music fades to background while Áine speaks]
Áine
Welcome to On Our Terms, a podcast featuring diverse disabled perspectives on independent living and disability activism, produced by ENIL, the European Network on Independent Living.
I'm your host, Áine Kelly-Costello. Today I chat to Clementine Willow Doevendans, a disabled and neurodivergent Dutch activist and poet. We talk fighting systemic oppression and understanding sanism, and you might just get treated to a poem at the end. Enjoy.
[Music stops]
I'm talking with Clementine Willow Doevendans. It's great to have you on the show. Can you start off by introducing yourself for us?
Clementine Willow
Hello, I'm Clementine Willow. I'm from Amsterdam. I'm an activist, lobbyist and educator on the topics of ableism, sanism, healthism and audism, yeah. So I teach people about the systematic oppression against disabled people and I lobby against the discriminative laws.
Áine
That's great, the focusing on systemic oppression and discrimination is so important. And can you tell me a bit more about what you do and why you choose to focus on these topics?
Clementine Willow
I go to schools, preferably, I go to medical school, so like students that really are going to be in the field. And I teach them about what I already said, the systematic oppression against disabled people, because I believe that those are the people that should know about the systems and can really help us achieve a better independent living for disabled people. And, yeah, fight for our rights as well. Like if they know in which systems they work, then they can do something about it. So like, working with us, instead of working against us.
Áine
Yeah, absolutely. Do you have any examples of those kinds of systemic oppressions that you can think of, that you'd talk to medical students about?
Clementine Willow
Accessibility, of course, is a very important one that I talk about. Some hospitals are not accessible, or like the waiting list or how nurses and like healthcare treats disabled people. So I talk a lot about that, but I also talk about genocides. I talk about the history of disabled people. And how that still affects us
Áine
Like, during the pandemic as well?
Clementine Willow
We talk about the pandemic, like it made for educators like us, it made things easier to let people without a disability understand what disabled people are going through on a daily basis.
Áine
Because they were experiencing such a change in their lifestyles that they were not used to?
Clementine Willow
Yes, and they couldn't do certain things because of how the government told us what to do. And like, that's what the government always does to disabled people, right? Like, we are so dependent on the government, as disabled people. The rules apply to us heavier than to non-disabled people, I find. So it's easier to talk to non-disabled people about this. When also mentioning like, oh, yeah, you know, what you felt when the pandemic started, and you couldn't go to your work and like those kinds of things, because at that moment, it wasn't accessible for you. So imagine how it is to be in a wheelchair, and not having working places that are accessible to you or having another disability. And it's not accessible for you. The world is not made for disabled people, in general, and in the pandemic, it was not made for you, at that moment.
Áine
Yeah, that's really interesting, because of course, in that moment, it was inaccessible. And then things pivoted to being remote so quickly, and a lot of disabled people were saying, hang on, like we've asked for remote accommodations for such a long time, and it never happened before. But no, I like that example of using the pandemic as kind of a relatability aspect for non-disabled people. I wondered if you just wanted to talk a little bit about how you identify yourself around like disability and neuro divergence?
Clementine Willow
I have Ehlers-Danlos Syndrome. So that's a connective tissue disorder. It's progressive. So sometimes I use a wheelchair and sometimes I don't, sometimes I use a walking stick, and sometimes I don't, I have autism. I'm also diagnosed with borderline and OCD and like those kinds of things. I have a lot of trauma. I think that's also a very important thing, in that with disabilities.
Áine
Thank you for sharing that. And I think, you know, people who have experiences across a lot of different aspects of disability and mental illness have so much to offer to disability activism from that lived experience as well.
Can I just ask you because I think there will be a lot of people here who are familiar with ableism. But maybe not everyone is as familiar with Sanism? Could you just say what sanism means?
Clementine Willow
Sanism is the systematic oppression and the systematic discrimination against mental disability (so people with mental disabilities, disabled people). Where ableism is more about the physical things like accessibility and how people with physical disabilities are being treated, this is more about being sane and insane, you know, like the idea of like behaviours, the mental health institutions that have very long waiting lists, for example, but also the history of that and how we treat mental disability. So like, it's also about criminalising so, ableism is more about pampering disabled people, be like oh no, you cannot do that because you have a physical disability or whatever or like inspiration-porn, right? So like, oh my god, it's so good that you can do this. Sanism is more about “oh, you are creeping me out, you're scary, you are not in your right mind”. So like you're not being trusted to do a certain things.
Áine
Thank you for explaining that. Could you just explain what audism is as well for anyone who's not familiar?
Clementine Willow
Yeah, so audism is the systematic oppression and the systematic discrimination against people who are Deaf or hard of hearing. But mostly it's focused on the cancellation of sign language in schools and in our education system, yeah.
Áine
From like a cultural--Deaf cultural--perspective as well.
Clementine Willow
Yeah.
[Brief acoustic guitar interlude]
Áine
You've been on the board of the European Network on Independent Living, on the youth board, and I wondered what drew you to independent living activism.
Clementine Willow
Yeah, what drew me to independent living activism was really I was in other activism as well. And I, I am still and I think that we should combine those two, a bit more.
Áine
What kind of other activism, for example?
Clementine Willow
So, what I find in independent living activism and like ENIL, what I really find is that they are more in lobbyism than really in activism, if that makes sense. So it's less radical, for example, and ENIL doesn't really talk about the systematic oppressions. So, really a system. So it's not really about like, oh, ableism, and sanism is the cause of this. And like, all the dates and all the facts, and like the history, more like a nice approach or something like we have to put it all in pillows, and like having a nice conversation about it, I find, and the other activism that I do is way more radical. So we will literally go to governments and like, be angry about it, you know, and I think we need both. And I think we need to combine it more. And I think it's a good ground, you know, because with shouting and being angry, which we should, because it's really not nice to be disabled in this time. But it doesn't always work. But it also doesn't always work to, as a disabled person be like, oh, yeah, of course, I understand that we are discriminated against, of course, I understand that it's not accessible, and that I cannot live my life or that I'm almost not – that I don't have the same rights as non disabled people or I cannot marry, you know, like I understand. So that's two very different approaches. And I think we should combine them and not make excuses for our disability, but also not be angry all the time.
Áine
Yeah, no, that's a good point. Because I think ENIL does quite a lot of policy advocacy, right? And the language around, kind of – European policy. Versus say, understanding kind of what the history of ableism and sanism has been, can be quite different approaches. Yeah. And also ENIL has the Freedom Drive coming up at the time of recording. We're on the 21st of September at the moment, and I think you're heading to the Freedom Drive.
Clementine Willow
Yes, I am. Very excited about it. Actually, it's my first time. And now also, because I'm in the youth board. So that's very exciting, for me.
Áine
I think the Freedom Drive is definitely a more visible rallying part of its activism as well.
Clementine Willow
So that’s the combination that I was talking about as well, we all have our expertise. And that's why I was drawn to independent living activism because I wanted to combine and I was like “yes, let's go, like, have a bit more spice into the mix, I guess.”
Áine
I love it.
[Brief acoustic guitar interlude]
So in the Netherlands, I know you've been involved in a campaign to stop a law that would have allowed less than the minimum wage to be paid to disabled people. Can you tell me about that campaign?
Clementine Willow
Yeah, so that campaign really started because of the need of, of the disabled people's voices to be heard, right? Because this law would mean, actually, that we would get 50% of the minimum wage, while we would work full time. So what we did was actually I was like an individual activist, and there was a very big organisation disabled organisation here in the Netherlands. I didn't really agree with them, mostly. But I was just thinking like, Okay, if I can use that, in our advantage to get this law almost evicted, then it would be amazing. So what we--I--did was really talking to them. And then we started this petition, and we got 89,000 signers, and that's incredible for disabled cause. So yeah.
Áine
So that law got stopped in its tracks before it got introduced, right?
Clementine Willow
Yeah, yeah, it did. Yeah. And a lot of things were like, a lot of radio stations, a lot of TV stations, they really picked up on it, because it was ridiculous. This whole law proposal was ridiculous. And I was glad that non-disabled people also viewed it like that. So it was, I remember 2018, when we had this whole campaign, that a lot of radio stations were like making jokes about it about the politician that proposed this, like, what is happening here? Like, why do you think it's a good idea to have 50% of the minimum wage while you work full time, and then to fill it up? You have to have so much paperwork filled in, and then if you are married, or live together with your partner, you don't even get that fill up.
Áine
So was that around, you know, employers could fill out paperwork, so that government would be able to pay the extra 50% for people who were single, not with a partner? But basically, that was really bureaucratic and difficult, right?
Clementine Willow
No, the employees had to fill it out, not even the workers. [Áine laughs incredulously]. Because we have to exempt the employers from all the work, you know. [Both laugh in exasperation]. Yeah. Because we have to make it easier for the employers, not for the employee!
Áine
So you get half of the wages. And then if you happen to be like, very, very, like switched on and know all of your rights, then you can ask for the other half of your wages. Yeah, no, that's terrible.
Clementine Willow
That just makes disabled people in poverty… anyway, we are already so like, now you're making it even more difficult. Yeah. And, but the politician that proposed this law was really like [speaks the politician’s part in patronising way] “yeah, but I just want to help disabled people”, and really gaslighting this whole thing like, “it's good for disabled people, because now the employers will have it more easy to hire disabled people. So this is a very good thing”
Áine
That’s so interesting, like, obviously, we've seen these arguments a lot in so many different countries, right? We can just kind of throw disabled people's human rights under the bus, in the name of doing something good for them, like classic ableism. But I find that really, like, encouraging, actually, that so many non-disabled people saw when, when a new law was going to make things worse, as opposed to you know, I think a lot of countries still have these existing laws that allow exemptions to the minimum wage for disabled people on the books, and there's not necessarily huge public non-disabled outcry about them. But it was good to see that in that case, you know, introducing something that would make things worse, that you managed to really get the messaging and get that out to people. Yeah, that's super exciting. That that law got...
Clementine Willow
Yeah, it did. But still, like don't get your fantasy up. Like in the Netherlands, it's still a shit show, honestly. Yeah, so we still have that wage dispensation. But then just for people who get disability funds and those kinds of things.
Áine
--from the government--
Clementine Willow
--of the government. Yeah. When a disabled person wants to work, then they go to an employer and like, have this whole normal way. And then they're like, “oh, yeah, I get disability funds from the government”. And then they're like, ‘oh, yeah, we will hire you”. And then two to three months, you get this wage dispensation. So that means that you don't really get paid from the employer, but get paid from the government still. But that has so many errors that a lot of people get less money from working full time or whatever they can work at that time, then they will just get disability funding from the government. Yeah. So it's really problematic. And also a lot of debt is being increased in that.
Áine
Just then this whole thing that we can just measure disabled people by these really strong, like, productivity norms that they would never get away with implementing across, you know, the entire population.
Clementine Willow
But also, like, the non-disabled society is really not getting paying attention to this cause, like, they don't care, you know, like, they really don't care as well. And in the Netherlands what I already said, I think, is that disabled people can still not marry or live together, and non-disabled don't care.
Áine
So just to clarify, the thing about living together is that basically that you could live together, but if you did, you wouldn't get any support from the government. Right?
Clementine Willow
Yeah. Every support will fall away, like your, your funding will fall away, everything. So we can say like, you can live together and you can marry but, can you actually?
Áine
--in practice.
Clementine Willow
Yeah. If your independent living is like taken away--really? Can you? Can you live like that? So yeah. So I prefer to say, like, you cannot, like we are not allowed. Because actually, it is. Like, we can make it more beautiful than it is, but it's not going to help.
Áine
Totally. And I think it's also something important for, you know, disabled people who do have a bit more privilege, and that they might not be reliant on as much support and have like, a quite well paying financial job, for example, to realise, like, how important it is to, you know, be an ally ship with the rest of the community who wouldn't be able to make that work at all?
Clementine Willow
No, exactly. But it's also dangerous, like those kinds of laws are so dangerous, because it makes you dependent on your partner, and what if your partner is abusive to you, and it's not a good way of living for you. And you know, and then you can just not leave because of the law. So, yeah, it's very dangerous for some disabled people. And we have to really be open about that and stop the stigmatisation about it.
Áine
Yeah, it's also interesting what you say about that, you know, non disabled people are not necessarily, you know, as up in arms about this, because this has been the status quo. But, you know, you were able to use that moment, and 2018 around the potential introduction of the new law to really shine a spotlight on how much worse that would make it. And galvanise a lot of energy around that, you know, as a tactic.
Clementine Willow
Yeah, so I was really surprised that it got this much attention, like I was genuinely surprised, honestly. Because mostly when we organise disabled petitions...
Áine
--or campaigns, or rallies?
Clementine Willow
Yeah, rallies and demonstrations, so whenever we organise disabled rallies, we only get like, five people, if it's very, if it's a generous day, you know. So, yeah, so I was very surprised that it got this much attention. But I also think that it was because it was already like a very big organisation, and it's like, friendly, disabled people, you know, like, we can make an exception for you. Because you're so nice. And yeah.
Áine
But in the case of this campaign, you know, being able to find some commonalities, kind of worked to everyone's advantage. Yeah.
Clementine Willow
Yeah. So it's also good to use that in our advantage, honestly. But in the long term, I don't think it will--it's going to help. Because now it's like it's almost 2000 23 You know, and we're not talking about it anymore like they also shoved a lot of ableist laws in the corona time. Yeah
[Brief acoustic guitar interlude]
Áine
I wanted to ask what independent living means to you.
Clementine Willow
I'm gonna read something from when I had my first ENIL meeting, or like a study session, I wrote on a paper, they asked us the same question. And I wrote on the paper, like "Independent Living, for me is doing everything your body and mind allows you to do, in your way, and with your consent, even if it's with help or not, without the limitations society throws at you". And I think I still agree with that 1000% yeah.
Áine
I really like that definition. So not taking independence as this kind of like, you have to do everything by yourself, or that there's only one correct form of assistance or anything like that. Yeah, working within the boundaries that your body and mind have, while not being held back by society, as well. And I also wanted to sort of ask, in terms of neuro divergence, and being autistic in particular, because, obviously, the independent living movement in Europe, but also in the US, and in, you know, a lot of places in the world started off quite strongly with people with physical disabilities. And it's only been comparatively recently that that's really making more of an effort to make sure it's a more inclusive movement of people with all different conditions. So, I wondered sort of being neurodivergent, and also having mental illness, kind of what that might add to how you think about independent living?
Clementine Willow
Yeah, I think independent living is still mostly focused on the physical. And I think it should as well, we also have different things. So that's also why we say ableism and sanism, you know. There are different systems. And the same with healthyism and audism, it's different systems, and we should treat it as different systems and not as one system. And it all goes under the umbrella term ‘ableism’, right? So the same with LGBTQI+ hatred. You will also have a lot of different sections in that and we should not clump it all up. So I think for Independent Living activism, I think they should focus mostly on physical accessibility, and also keeping it a bit in mind, you know, like, sanism, and like, those kinds of things. But, yeah, we all have our different expertise. And not a lot of people are focusing solely on accessibility. And I think that's very needed. Physical accessibility is also not only about physical disabilities, if that makes sense. For example, if you want to make it accessible for someone that is neurodivergent, it's still in the physical world. But yeah.
Áine
Are there some examples you could give for, you know, for people who, who are not neurodivergent, and maybe, you know, have had quite strong mental health and stuff, who might not have considered the sorts of things that might be relevant to somebody who's neurodivergent? Obviously, it's really different for each person, but is there anything in your life or that, you know, from other activists, like, one thing I wonder about is a lot of neurodivergent people, myself included, have difficulty with executive dysfunction. So kind of managing to prioritise a set of, you know, tasks and kind of carry them out in terms of daily living. So are there any examples like that that come to mind for you?
Clementine Willow
Yeah, so can you repeat what you're asking me right now? Because, that was a lot of information. An example, I think, for some people with neurodivergency, it's like, if you ask something, of course, you can give a lot of information with it. But like, be very specific with it. So like, you have one question, and then that's it. Yeah.
Áine
Yeah, no, that's a good point about being clear in communications. So I was just wondering if there were examples that come to mind for you about what sort of aspects of independent living are important outside of the sort of most obvious, but the stuff that is not visible or the stuff that's yet connected to the mind or mental functioning?
Clementine Willow
Yeah, I think just keeping an open mind is very important. Like I was immediately thinking of things like stimming or that people with neuro divergence II can react in a very different way than you are used to. Because they are trying to mask for example, and then it looks a bit weird in your eyes, maybe. For example, I can sometimes sound very passionate, and when I am very passionate about a subject, I can be almost shouting at you. And like being fairly with my hands and be like, very animated. But also on an emotional side, I can be very flat. And a lot of people see that as fake or people see that as like, “Oh, what is happening”, you know, like, when it's about sad feelings, I can be so flat. And when people cry, and like, oh, maybe I should cry now, like, this is a sad situation. And then I forced myself to cry.
Áine
Having emotional responses, which might, you know, which are not neurotypical or which people might not find, as expected, and making sure people are sort of open to not making judgments, right? Based on that.
Clementine Willow
Yeah. And just see it as our way to function. Like, it's not a bad thing that we function in this way. Like, we should not have this idea that we should mask so what I said, like, I have this feeling in that moment that I have to cry and to force it, and then it comes out in a very peculiar way. Well, I don't feel it, you know, so like, I'm lying to myself in a way. Well, I can cry about other things, and that should be fine. We should not expect certain behaviour patterns in people. And that's also what I do a lot in my anti-sanism courses. We talk a lot about behavioural patterns and expectations. Even if you are neurotypical or not, it doesn't really matter. The system puts a behavioural pattern on us anyway. So, if we stopped doing that, it would make it easier for everyone. And we can just be who we are.
Áine
And I know part of your practice. Obviously, you do a lot of teaching, but you also are quite artistic. And you write poetry. And I wonder what draws you to writing poetry as a form of self expression?
Clementine Willow
Oh, that's a good question. Actually. Yeah, I think it has to do a lot with my autism. And it has to do a lot with my traumas, I was mentally abused in my life. So, for me to gather my emotions and to understand them, I write them down. Yeah, and I share that with the world or I try to share that with the world. I want to publish a book, a poetry book, because I think we should end the stigma, as well. So that's a two sided thing. So like, it's for me to understand what I'm feeling at that moment. But also to let other people understand themselves, as well. And that it's okay to talk about these kinds of topics.
Áine
I love that–multiple purposes. To finish, would you like to read us a poem?
Clementine Willow
Yes. This one is about sanity. So like, yeah, it's about mental health. It's called the loose ends of sanity. Are you ready?
Áine
Uh-Huh.
Clementine Willow
The loose ends of sanity
They've been cut, Broken and lost
Sow them back together, they say
it must be easy
To wrap it up in a ball and just let it bounce for a while.
And you do,
Because it's all that you can sometimes.
It all holds,
And you lose it out of your sight
You start to wonder:
Where does sanity end without the lead of a loving and caring hand
Then, in the back of your mind
You hear it rumble, its soft
But louder than words that should give you comfort.
Out of curiosity
You listen closely now
Hear the rumble fade away
And the words come to you as tears on a freshly cut wound.
Throw it again, you hear in the back of your mind
Do it before it dies out.
And you do
Because it's all that you can sometimes
Higher you aim
Emotions you connect
And you let it bounce once again.
One more time.
As it ruptures all before your eyes
You sit down, pick some strings up
Leave the rest
Gracefully you make ribbons of the largest strings left and there you go,
Dancing with the loose ends.
Áine
Clementine Willow, thank you so much for sharing your poem and sharing your time and insights today. Really appreciate it.
Clementine Willow
Of course.
[Áine speaks over acoustic guitar music]
Áine
Thank you so much for listening. Tell your friends to subscribe to On Our Terms wherever they listen to podcasts.
The featured song is Come Here by disabled performer and activist Dennis Queen.
Podcast cover art and visual design by disabled illustrator Hatiye Garip.
The first season of On Our Terms is hosted and produced by me, Áine Kelly-Costello, for the European Network on Independent Living.