Episode 9 William Boeva on living in a subsidised segregation

It comes from a place of fear and also from the perception that disability or other things ‘do not have anything to do with me personally’. I once heard you say that being in a wheelchair is actually super close and personal to everyone: it's just a question of when it's your turn. If I sprain my ankle or get old, ....

Yes absolutely and you see that a lot with people who end up in a disability, that they are then like 'shit, I really wasn't prepared for this and only now do I notice how hard life is...'. If you have children and you have to maneuver a pram, you will also be like 'wow, those cobblestones everywhere are really beautiful and authentic, but that's really not practical...'. As long as you’re not confronted with it, it just does not cross your mind.

Of course. Now, I do find it very clever that you say 'I can be proud of that, I can be proud of who I am'. Has that always been like that for you? Have you always felt that way?

No not at all. I used to hate that. Whenever I saw someone else, if I saw another dwarf walking down the street - I crossed the street! I didn't want to see that because I grew up in society as someone without a disability. I did have one, but I put it away as much as possible.

And you came from a nest where there was also plenty of encouragement to be 'as normal as possible'?

Yes. My brother has no disability, I have two half-brothers too - both without disabilities. And my parents refused to treat me different than them. Lots of people said to them to send me to special education, really, the craziest things were proposed: 'let him become a cobbler and then they'll put him on a stepladder and you won't see that any more...'.

Oh my God.

All that has been suggested and even encouraged. I had to take an IQ test twice to enter mainstream education. Once in first grade and once in sixth grade, when I was even first in the class.

How do they even explain this, the fact that they want you to take those test.. I am speechless.

That's the system, that's 'normal'. It has to do with the perception that lives in our society. I experienced that firsthand. I'm now in a wheelchair that I can move myself, but before, if someone pushed me then people would come and ask 'how is he', looking over me and talking to the person who was pushing my wheelchair – while I was literally right in front of them.

And that strange behaviour might be born out of good intentions. We used to be very Catholic here in this society, we have that caritas idea for ages. The very paternalistic stance 'we have to take care of the weak in our society, our disabled'.... And we decided then, hundreds of years ago, to put those so called weakerpeople at the margins of society. And that way the minority, the so called weaker people are not to worry about the ‘problems and struggles of the real world’, they were secluded and in a way ‘protected’. And that in itself can even be a positive thing. But you see, for example, in Spain and Portugal, which are also very Catholic countries (or at least they used to be), they used the same ideas, including the caritas idea and the paternalistic stance on it, but there they decided to take care of these people by placing them in their midst. Which is the same thinking, but implemented differently. Which gives a very big difference. There, for instance, you see a lot more people with disabilities in higher education. The unemployment rate for people with disabilities is also lower there than in Belgium. In Belgium it is - I think - something like 70%.

Unemployment?

Yes, even among higher educated people.

And where are the root causes of that? Why do people hire so few people with disabilities?

It reinforces each other. You actually have to ask yourself the question 'how many persons with disabilities do you see?' If you know that according to Handicap International, 19% of the world's population has a disability, you should then go out on the street and count: if you come across 100 people, how many of them have a disability? And then one can still estimate that some disabilities are invisible to the eye.. And that's true. But even if only 1% of the world's population were in a wheelchair, which I don't think is an unachievable figure: 19% of people with disabilities worldwide - get that, half of them have a physical disability, another half of them could have a visible disability, another half of that... 1 in 5 of people with a physical visible disability are in a wheelchair. Then we would say 1 in 100 people. Where are they? Why are they not visible? And that is the result of that systematic...

Being put away? Hidden?

Yes we live in subsidised segregation. I do notice that in every aspect of life.

So you turn it around: because we are so densely populated, we once had the luxury of setting up separate schools for separate groups of pupils. And before we know it, we have actually set up a segregated system that works againstus....

Yes. Do you realize that these kind of ‘special needs education’ schools are always located somewhere far away, in a forest or so. These schools are never located in city centres. Recently we all heard in the news about children who have to sit on the bus for six hours – and what was the solution that they came up with? They are providing more busses! Come on, this is not a solution at all! A solution addressing root causes would be to build schools that are closer by, that are not tucked away at the margins of populated areas. Why not have schools somewhere in the centre? Not to ‘hide away’ our students with special needs? I am sure of one thing. If anyone of my former class mates is in a position to make these kind of decisions: they would in fact take this into consideration. This is what I mean that separated schools block us from intersectional solution-driven decision..

Your former classmates automatically look at people with disabilities with a completely different perspective?

Yes. And keeping classrooms separate, is blocking progress. Because schools are delivering decision makers, service designers, care givers,.. who are not taking into account their friends or classmates with disabilities when designing a house, when caring for elderly, when developing laws,..

Indeed. And recently in a brainstorm with Jan Leyssens from Switchrs I learned about something that is called ‘shifting baseline syndrome’: in your life you always refer to the first 20 years of your own life. For example, 'now there are more frogs [than in the first 20 years of my life]' - or more or less of this or that. And that has an impact on how you deal with data on global warming because people are going to be like 'yes but it used to be...' - yes 'used to be' as in 'in the first 20 years of your life', but that's not the reference for the general.... But so if in the first 20 years of your life you don't have a friend in a wheelchair or who speaks a different language, or.... Then you're automatically not going to take that into account.

That's right.

Yes and in many cases, you're probably even going to be anxious about that. Anxious as in 'ow, how should I deal with that', and 'they will do things I don't want', or 'they behave differently from how I want',...

This is something that comes very natural: humans are by nature a bit xenophobic. We are interested in everything that is new, but we are also a little bit afraid of it. If an alien ever landed here.... On day one, half the world crawls into its bomb shelter and the other half wants to meet it. A hundred years later, when there are planty, everyone will think: "Sure, I'm sick of these guys" or "I won't be surprised if a green one walks around here...". Everything takes time to get used to. We need to leave some room for mistakes, for learning.

Now if we look at thresholds towards a job, towards the labour market, I wonder... You have studied, you continued your studies. At a certain moment you got to a point where you said 'I'm going to earn money' and you became a comedian. Between that period when you studied and became self-employed, did you try to find a job somewhere? Did you ever face any restrictions in the job market yourself?

I actually became a comedian while studying. At some point I had to make the decision: comedy or studying. The choice was made fairly quickly, I did have the good fortune of never really having to apply for a job or look for work. But I donotice that some problems are common. It's not just when looking for work. I used to know someone - an architect, she had a big public project, and her boss at one point said 'I've already done the car park'. So she asks 'have you also provided parking for the disabled?' to which the boss says 'yes yes'. And the ground that was with those kind of loose pebbles everywhere. So my friend asked to try it out with an actual wheelchair. And he experienced the real trouble - the boss never thought of that before. And in the professional sector too: very often people determine for other people wat is or is not possible. If you ask most HR departments now e.g. 'someone will apply tomorrow with a different skin colour, what work would you offer them?' they will now (hopefully) say that depends on his abilities. Whereas when you say 'someone with a disability is coming to apply for a job’, the answer to that question is going to be 'that depends on what his or her ability is'. And that's a completely different way of looking at it: you're actually already assuming or determining what that person could do. Whereas… Well let’s be clear: this is a system that needs to change. It might take time but the first step will always be awareness. And there's another big problem there. And that problem has been dragging on for a long time.

Roosevelt, for example, the president of America, he was in a wheelchair. Hardly anyone knows that. There are hardly any pictures of that. Because yes 'surely you can't depict the president of America in a weak position, in a wheelchair'.

No indeed, what violations are they talking about?

The European Convention states in relation to work that every person with a disability has the right to a reasonable adjustment. A reasonable adjustment: that is, of course, a vague term. But it is also often just minimaladjustments that are needed. And that is not respected: one can't complain about any breach of this commitment anywhere. One can only report it. And beware, our government keeps taking the sting out of it: Unia, for example. The Flemish government is not going to be a part of that body anymore. They replace it with a kind of Flemish version of it. But the devil is in the details: that Flemish replacement will not be able to impose legally binding measures, it can only advise. So yeah any progress that was made over the last 20 years has just been annulled..

So what would stop Belgium from coming into line with those European Regulations? There is no logical argument for that, is there?

Maybe it's because the people drafting those laws and decrees either have no disabilities themselves or do not know anyone personally who does?

Yes. We have been convicted of it twice now - on the second conviction, there were even voices in parliament that suggested 'can't we opt out of that part of the convention?' So you want to opt out of a part of the Convention on Human Rights - that's weird in itself, isn't it! And now a committee has been set up to investigate how our practices could be improved so as to align with the Convention, and on that committee no onewith a disability is participating. I guess they might argue that ‘they can’t find any potential participant to the committee with a disability.. - but come on let’s be honest: that's a bit nonsense. I know quite a few myself by now, you meet people,... Where there is a will, there is a way. But okay, I might be too inclined to believe that. But even if it is a reality: if actually you cannot find any potential participant with a disability – that fact alone should tell you clearly that something is wrong, right? Surely you can't now say e.g. 'we can't find anyone from a migration background'. We can't say that anymore, can we? That is no longer true. Well, it is not or should not be true when it comes to finding people with disabilities. Sometimes, when you are in a position in power, you should simple open your eyes. Right now you might get away with the ‘I can’t find them’ argument – but for how long do we need to hear this explanation..?

I think the private sector is going to be faster than the government when it comes to including persons with disabilities into their daily business.

Why do you think that?

I guess at some point it might be even obligatory – purely from a business point of view: there are shortages, all companies are looking for workers. So they are also gradually starting to look in the direction of this big group of people, people with disabilities, who actually do want to work, and companies are going to find ways to alleviate the obstacles that laws and regulations impose on participation of these people. So in the end I think it’s the companies that are going to be able to put pressure on the government to adjust those decrees and laws ‘..we're here with the HR department and we want to employ someone and please clarify for us this spaghetti of rules because nothing seems to make sense....’ And also: I am not an expert in risk analysis, but if you look at the figures of people with disabilities who are working, 70% do not have a congenital disability. So that means that those people happened to ‘end up’ disabled. Again: I'm not an expert in risk assessment for companies but I would prepare for that if I were a company. And that's starting. That's starting to come in.

You also have a programme to business leaders or organisations on this topic?

Yes.

And what do you bring forward within this programme?

In it, I kind of outline how my life turned out. Because a lot of people who see me now think 'You succeeded, didn't you? So what's the problem?'

The toxic gift of being a role model.

Yes indeed. One sees the swan but not how hard it has to paddle underwater. And that is pretty much the problem now: I am indeed a role model but that should absolutely not be misused to portray other persons as if they don’t succeed because they are just too lazy to do so.

I kind of slipped through the cracks, I was able to climb out of the pit and I now have the choice to care for other, to help them climb out of it as well. And I outline that situation. I try to do that in a confrontational way - I see you brought the book 'Excluses', I bring pieces from that book into the program for businesses. Actually, it just starts by asking yourself 'how many people do you know with a disability - who are not family?' You’ll immediately realize: there aren't that many. And then I try to outline how that comes about, and depending on which company or organisation I bring the programme, I add things or leave things out - for example, I have a big piece on education.... But also the advantages for a company of employing people with disabilities are covered. The example I always quote: what do you want, someone who has left school and has always done very well in theory but starts panicking at the first problem because that wasn't in the books... or do you think 'maybe it would be interesting to have someone here who has had to dodge every obstacle (literally) to get in somewhere for years and who will therefore not be so quick off the mark if something goes wrong or if an alternative has to be found'? I'm convinced that's a skill.

It is a form of incredible resilience....

Yes. And that skill is developed very strongly among persons with a disability – I would say it is in our nature. Survival of the fittest? We literally are always on the lookout for ways to survive, to take part, to overcome obstacles,..

Whereas people without disabilities have had it in general far more easier and they have not been obliged to be as problem-solving,..

Voilà. You have to solve problems as they arise and I like to quote the parallel with a friend of mine who got a very different life path because different choices were made for him. Nevertheless, we were very similar. We both had physical disabilities, not mental disabilities. And yet he ended up in a completely different path. He attended special needs education. Then they wanted him to continue studying. That didn't work because he just wasn't prepared. And that's really what it's all about. I also try to include numbers and data – those seem to matter a lot, especially for companies. And a bit of the question of 'try looking at it in a different way'. It is really as you mentioned: the question is not whether you will ever become needy yourself, the question is when.

When am I going to be needy and when I am, am I going to be cool with someone else filling in for me what I can and cannot do?

You're not going to want that, are you? You remain the same person only your mobility might be a bit less. And yet we still do that. Why? We should really reflect on it and figure out strategies to not do that in the future anymore.

Yes. It is a matter of being aware of it in the first place I guess. Because that's partly kind of an unconscious bias I guess. So we have to become aware of that and then also dare to think about changing the way we think and behave. Because that almost takes courage to make a change.

Yes.

We ourselves also organize pathways towards participation for young people who do not fit into the traditional school career – and there is more of them than one would think - who are in danger of dropping out. In these trajectories we give them the opportunity to explore and develop their abilities outside of the classroom one day a week: they explore hands-on what a work-environment feels like and has to offer, in a company of their choosing. Our colleague in charge often reminds us: 'the essence is that we have to help these young guys by holding ourselves back and not giving in to the urge of helping them'. That takes courage, because we all have an instinct it seems to help and to do things for others instead of strengthening them to do things themselves. But really, growing happens by learning to do things by yourself, so we should refrain from taking this away.

Indeed, one has to make sure to facilitate this space of growing.

Yes and we are not used to that.

William you really use your platform now to stand up for equal opportunities and equal rights - do you do that mainly out of frustration or out of love?

A bit of both actually. I do notice lately.. The thing that motivates me, paralyzes me at the same time. The more people with disabilities that I come into contact with, the more similarities I see between them and me. I still find that very difficult to even express because for years I said to myself 'William that's a feeling you give yourself, it's not, you're imagining things.' That feeling that somehow I still get fewer opportunities and possibilities and people expect me to be more happy and more grateful than a person without a disability. When it comes to equal opportunities, I do feel as if I am not starting at zero, but at minus five.

Recently, a student interviewed me. She wanted to do research about people with disabilities in the artistic sector who are professionals and operating within the artist status. She had to backtrack on that because there was no onelike that. There was none. So she then moved on to 'people with disabilities working in the artistic sector who are also preferably professional'. I don't fall under that either because I am self-employed. But she told me about her findings. What struck her was that people who don't have a disability and work in the art sector.. It happens that they get a disability, and then they all have the feeling of 'I am the same person, I have the same possibilities, but I get fewer opportunities'. 'I get fewer opportunities AND I have to be more grateful for them.' When she told me, it struck me: I was like ‘my God that's something I've been saying to myself for almost 15 years now!’ I have been supressing it, ignoring it, hoping it would go away,.. and when it is related by someone else to you.. it was like looking into a mirror, I could no longer deny it.

I even notice it among colleagues.... I can still walk down the street, wherever I walk in: everyone recognises me, people want to take a picture with me, they say hello to me,.... I don't mind all that, but the colleagues who are also at that level of fame get a lot more opportunities and don't have to prove themselves as much as I do. And I find that something very strange. It troubles my mind.

You still feel that way, though?

I still feel that way. I notice now, for example, in the sector I work in: all the channels say 'we want a screen face with a disability' - but no channel has contacted me yet. And they don't necessarily have to be fans of me, but I am at the moment I think the best-known person with a disability in this country. So one would at least assume 'one-eye is king in the land of the blind...' Even if you wouldn't like my qualities, that's possible, but at least I should be contacted, no? When it comes to concrete action, suddenly it seems that in the end I don't seem to really belong.. While I've always had to fight for it, but then it's like people think "you don't belong to the group of persons with a disability, because you're William Boeva".. So when they’re actually on the lookout for a face on screen with a disability, I get excluded. Come on, it feels like I have to fight the whole battle. Again.

And I also recognise that from when I just started doing comedy. I was 19 or 20 at the time and went trough a not-so-nice period of puberty, and I was like 'yeah ok I have a disability but actually I don't care' - I was convinced that me having a disability really did not matter that much. The fact that me being disabled was not a thing at all within my group of friends – everyone was used to it and no special attention was given to this factor – might have contributed to my attitude towards it. And then I stated doing comedy. In my very first set, I didn’t include a single midget joke. And nobody laughed. And afterwards - that was in The Joker - I ask the pub owner whether it was that bad, 'no it was ok', he says, 'but you didn't have a single midget joke!' and he advised me to include these kind of jokes in my set because the audience would find it strange if I wouldn’t bring it up. Realizing this was a really big slap in the face for me: clearly my disability it doesmatter. In general everybody can say – in theory – that disability and how one looks does not matter, but I learned right at that moment that despite what everyone says, it matters. A lot.

And so I build myself and my act up, aiming for people to look further than my disability. And it really takes a toll, it is not easy. A few months ago I wrote an open letter about inclusion in the media and I got a lot of positive reactions to it from people with disabilities, from people who are close to people with disabilities, from experts too. But there are a lot of negative reactions, still. And I was overwhelmed by those reactions, it made me realize that the problematic mindset is really still so big. Some people sent comments to me like - and I find this quite funny because how very ironic - 'hey pussy dwarf you should respect people with disabilities'... I mean, come on, this is just too ironic on too many levels, right? But the harsh reactions on that letter were really confrontational for me. Especially since I wrote that letter in the spirit of urging people to realize that ‘we are capable of doing better’. The fact that that my letter caused so much fuss makes it clear that there is still so much work to do. I mean, had the same thing been posted along the lines of 'I think there should be more women on TV' everyone would be saying 'yeah, you're right man'. No one in their good mind could say anything derogatory on that plea. But since my plea is to take people with disabilities seriously, somehow the general public, broadcasters and programme makers feel that it is okay to bash the writer of this letter..

You must know, I spent two weeks rewriting it to take every possible sting out of it so as not to offend anyone, to really make the message as clear as possible: 'hello, I'm pulling the emergency brake - you can't hide behind programmes like this to say you're making inclusive television'. The scourge caused by my letter just shows how many steps we still need to take regarding an inclusive mindset. Lots and lots of people are not yet on bord, I feel that very strongly. Like, for example, the Belgian Railway Company recently bought new trains: they are notwheelchair accessible - how can that be? It's 2023 and people still say to me 'William you can't expect to get in everywhere with your wheelchair, can you?’ I am baffled by this. Come on. Everyone expects to be able to move from point A to point B, right? Why shouldn’t I?

‘It costs a lot of money' – is an argument people often like to throw my way. Okay, I understand that making public transport inclusive so that people who use wheelchairs have access, will take some time. It won’t happen overnight. But seriously, at some point someone needs to start working on it. In all honesty, working towards inclusive public transportation, inclusive buildings (with doors wide enough to let a wheelchair through, with elevators for who cannot take the stairs,..) that is something that I would have expected to start like 50 years ago. Like, the last time that building y or z got renovated, wasn’t that a splendid time to implement inclusivity in your renovation plans? Just please stop using the money argument to keep stalling any efforts.

Exactly. If only more people would realize that the fact that they are not in a wheelchair right now, does not mean that they might not need one tomorrow.. If this mindset keeps on being the mainstream one, those people would then probably not even be able to enter their own homes..

Yes. I literally had an email from a bank manager sending me 'William I have read your letter. I have one customer in a wheelchair. What do you expect from me now? I'm developing a new branch - I can't adjust everything for one person, can I?' And then he followed up with 'But when I start thinking about it.. what if that one person is going to be me? Or someone in my family? Or my best employee? Should I then fire them because they can't walk anymore? And I might even miss out on potential customers.'

I was just about to say that as well!

I mean, go to a company like Coca-Cola and say you have a marketing plan that can appeal to 19% of the world's population. They jump in the air hey, that's an insane number! You can make the simple comparison: if I want to go to dinner with my friends, there are ten of us, I choose a restaurant and I see that they only have high tables there,.... That’s a no. We won't eat there. So as a restaurant that’s a big group of customers that you loose. So a company not only looses that 19% group but also all the people who hold this 19% of people close to their hearts. It was calculated once: if in the United States one per cent of people with disabilities would more than those who are in fact employed right now, the gross national product would increase by four billion or so. Mind you, we are only talking about one percentage of increased employment of people with a disability! That’s crazy, don’t you agree?

I mean, so many opportunity lost..

Yes, and we have actually been so patient already - especially with these systems - that in fact it doesn’t really matter whether one wants to make progress in this regard because of fairness of because of commercial goals.. We just really need to make a start and at least take the first step – that should actually have been taken years and years ago..

And there, then, is a glimmer of optimism that I heard from you just now: the tightness we have in the labour market today may well mean that the private sector is going to do some things and that things are going to move forward. Let's all hope so. And especially after people listen to this podcast: then the world is just going to change completely William! There's no way around that.

I also hope Ben Weyts (minister of education in Flanders) is listening.