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The following document is a transcription of the Black History Month episode of our podcast Audible Autism. This is not a verbatim transcription and minor edits have been made to allow for grammatical clarity, but the writer has ensured that no changes have been made to the original meaning of the content.
*CW: Suicide*
INTRO: Testing, testing, testing. Can you hear me? This is Audible Autism. *The Video Collection Ident*
ODAI: Hi there, listeners. This is Odai speaking. This is going to be a very special episode of Audible Autism: Interesting People, Interesting Facts. This Episode is going to be our Black History Month special episode. With me today we have noted activist, speaker, and I guess you could say defender of Autistic rights, William Vanderpuye. Hi there William.
WILLIAM: Hi.
ODAI: And we also have mediator and member of the Autistic Empire, Alex.
ALEX: Hello
ODAI: So, the gist of this episode is sort of an idea that I’ve had for a while where we are all predominantly Black men. So unfortunately, there are no female voices in this meeting. But it is often the case I find, I don’t know about you William, but when it comes to Autistic advocacy or in terms of the voices that get represented, Black people aren’t usually considered adjacent or aren’t really visible. And this is something I have wanted to get into because we exist and everything, but for some reason it is like we are not noticed on the radar. We are more likely to get brushed to one side and people think that it is something else that explains our behaviour. So, I think it is important that we have a discussion on this, just to delve deeper into this and also so those of us who are Autistic or on the spectrum themselves feel like they are represented and don’t feel left out and Alex is here to be our mediator.
William, as I said before in your introduction you have been doing autism advocacy work so would you be kind to explain to the listeners what exactly it is that you do.
WILLIAM: Alright, my name is William Vanderpuye and I’m an Autistic advocate, I’m Autistic myself with a diagnosis, and one of the things that I do is to raise awareness, especially among the Black community, about autism. Especially bringing out the positives of autism because within Black communities mostly autism is seen as something negative, almost like a curse, a taboo, something that should be hidden, something that should not be spoken about. And I’m doing the direct opposite, that’s bringing it out in the open, celebrating Autistic people who are in society, bringing out ways to support Autistic people by dispatching strategies and support measures, spreading out information out there. So that is basically what I do. Also, I am one of the directors of an organisation called A.I.M (Autistic Inclusive Meets), one of the things that we do is to engage in campaigning and protests against the mistreatment and the abuse of Autistic people through the means of false medication, quack medicine and interventions that seek to suppress the natural Autisticness of Autistic people. We also organise lots of family outings for Autistic people and their families, organising things like picnics, play-dates, movie nights, and all sorts of things just to get together with other Autistic people just to relax, celebrate each other and also to support each other. So, in a nutshell that is what I do.
ODAI: OK, you sound like a man of many talents right there.
WILLIAM: Thank you.
ODAI: So, I guess the first thing I really wanted to touch on was; what is it that you think prevents Black people from getting diagnosed or at least getting the help that they need necessarily compared to White people? Especially considering in this country for me, as I have mentioned before in some instances, I was a late diagnosed person, I was like 17/18 when I was made aware of it. My family didn’t know what it was, I knew I was dyslexic cause my dad had it and I sort of had dyspraxia, [autism] was not something I was really aware of or really had any knowledge of it was just sort of “Oh, this is a thing that I kind of have to get to grips with now.” So, what do you think is preventing people from getting diagnosed, or if there is do you think that there are any systemic barriers that prevent people from being able to get diagnosed?
WILLIAM: Alright, I can’t really speak for everyone else, but I could give an example of myself. I only got diagnosed at the age of 39 and I found out I was Autistic around the age of 34 and that’s when my quest for a diagnosis began. So, I fought for five years to get the diagnosis. Now, in our Black communities one of the things that prevents us from getting a diagnosis is lack of awareness from those around us. If you examine the situation closely you realise that Black people are a tight-knit community, we associate ourselves with other Black people, and now if there’s not enough awareness within the Black community then the information is not going to get out there. So, someone might be Autistic and they might never even know, because the people they associate with do not also know about autism, cannot see the signs, and as a result the persons needs will be unmet and the person will have to go through life fighting their battle against the tide, rather than with the appropriate support. So that is one of the things. If you compare it to other ethnicities, let’s say Caucasians, they have extensive knowledge of autism, they have measures in place to support the individual. So, if someone is exhibiting the traits of autism, they are quick to pick up on it and make a referral.
The next thing I would like to talk about is; are there racial disparities or even the systematic barriers. Yes, the element of implicit bias in our health systems. When I began to pursue a diagnosis, it took me five solid years. I went to my GP and the GP did not want to refer me and this is exactly what he said in his own words; that at the age of 34 I’m married, I have a good education, I’m in employment, so “it would be of no point for us to refer you for a diagnosis because it costs money and you can do without it. It’s best to channel the money/funding towards people who need it, with more severe autism.” However, I insisted and he ended up sending a referral to the appropriate doctors. The letter came back saying that they are not going to refer this man, that’s me, further because “autism is a childhood condition”. Those are the words of the assessment bodies, yeah, that autism was a childhood condition. Now, if I had been from a different ethnicity, I don’t think I would have met all these barriers. It wasn’t until I encountered a problem in my employment life and I was suicidal, depressive, had hit rock bottom. That was the time when the diagnosis went through, so if I had not gotten to that point, I probably would have never gotten the diagnosis. So, I think that there is an element of implicit and explicit bias, racism and also a lack of awareness within the Black communities.
ODAI: Yeah, it is definitely an issue that is multi-pronged I find, because I remember when I tried to get diagnosed and I had to try and get it through my GP, my GP also wanted nothing to do with me when I was that age. He said it should have been done with the school psychiatrist. Some people would say granted he was close to retirement, but it was the fact that this was somebody with whom I had kind of had good dealings with up until that point just out and out disregarding me and not wanting to do anything that was a problem. There’s also an issue in the fact that boroughs tend to be a problem, I live in Harringay borough and in regards to my dealings with the Harringay borough in terms of getting a diagnosis or trying to get assistance it’s a combination of slow and very opaque. When I try and get any information from them it’s like I am having to pull teeth because I am having to remember acronyms and remember people who I spoke to at whatever time. Also, the only reason I got a diagnosis in the first place is because somebody went to my sixth form, who was a specialist in that regard, spoke to me and said maybe I have this. When me and my mum looked through an email that had the signs of [autism] we both agreed with it and she agreed with it too in the sense that she had a realisation that she had it as well because she had the same signs. For her, when she was younger they thought she was stuck-up because she would rather be by herself than be with other people, so when it came to me being born and I had a lot of the same traits she didn’t think nothing of it, it was just a case of “oh he’s like me, it’s fine” you know? Going back to the whole thing, my sixth form was in Walthamstow and they were very quick to respond in trying to get things up and rolling and in place. Compared to here where I haven’t heard anything or really gotten a letter unless I’ve had to push through and get things done.
I do agree with you in terms of the close-knitness of the community, it’s a positive and a negative in that sense, because it is close-knit people stick together and you do feel a sense of solidarity sitting with you. Just to let listeners know, we were talking before we got on here and I asked him where his last name was from and he said it’s from Ghana. That’s where my dad’s side of the family are from and he recognised my name was the same. So, there is that sort of common ground of like, oh we are from the same part of West Africa. But it is also difficult because when you try and bring that information in, I don’t know about you William, but sometimes when I have tried to speak to certain people about Asperger’s or whatever it is kind of greeted with suspicion. Or as you’ve mentioned, the quackery, because one or two people I know, who have been close to me, they haven’t abandoned me necessarily, but they were sort of distant because they didn’t know how to approach it and it was only really after sitting down with me and speaking about it that they realised “Oh, so this is what it is and you are still the same person”.
WILLIAM: You know, I’ve experienced exactly what you are saying so I can definitely identify with it. I’ve had people to whom I’ve made the disclosure and some of them will say “No, I don’t think you’ve got this.” And on the flip side you’ve got others who will go “Oh yeah, now it makes sense, that explains it.” So, I’ve got lots of different, mixed reactions. I’ve got family members who have supported me positively and others have gone ahead to realise that they have got the same traits, have done some more research and are on their way to getting their own diagnosis. And on the flip side I’ve got others who have distanced themselves from me because that stigma is so real in their minds and it’s taken me a while to convert them or educate them about autism in general. So, it is like a mixed blessing in other words.
ODAI: Yeah, it has. Alex, sorry, I feel like we have kind of been neglecting you in this discussion. Is there anything you would like to comment on or anything you would like to share in regards to this?
ALEX: No, I’m just fascinated. I don’t really get to personally see this side of things. But I find it so interesting that someone who maybe hasn’t done much reading, doesn’t know much about autism, but has an idea of what it is in their head when presented with someone who doesn’t match with that, rather than being like “Oh, my understanding may need improving.” Would instead go “Oh, well you’re not Autistic, you don’t match what I associate with that term.”
ODAI: Yes, yes or in my case, I don’t think this is unique to me, but I’ve had this thing where certain life accomplishments have been used against me in the sense of “oh, there’s no way you can have that problem because, well, look at you. You’re broad-shouldered, you talk pretty well, and also you managed to come out of university with a degree. So, your problems aren’t that bad really, you were able to study for three years.” It’s the most frustrating and condescending reaction to deal with from people like that. It’s weird because often it’s a thing where I sometimes think about how I don’t know, at least from what I’ve seen in the media, or even, not saying this as a disrespect or anything, but in certain places like the NAS (the National Autistic Society) it’s not really, as far as Black people [are concerned], really brought up or really talked about or addressed. It creates this awful feeling where you feel isolated from people at large, especially because I would say that in the media at large sometimes you don’t feel like you are being represented, you know what I mean? I think about how my mums tried to get me to watch certain BBC documentaries about Autistic people, one that springs to mind is the Chris Packham documentary about his experiences and going to see all these doctor and scientists doing experiments of it. One part of me sort of locks up because it gets too much because I’m going through this already, but I don’t have a camera or any sort of assistance or studio that’s documenting or highlighting this. But it’s also the fact that these are all White guys who are getting this coverage. You know? There’s nobody who really looks like me or is of a similar background to me or where I’m from. [Someone] I can connect to and be like “oh, they get it, they understand it”. I’m not saying there aren’t Black Autistics who work in that field or on the internet there aren’t bloggers or streamers, but unless somebody brings them up to me directly, I haven’t heard of any of those people.
ALEX: Yeah, absolutely. I think your, you say you don’t feel represented and I don’t feel your feelings are unjustified there. Surely in any measurable way you aren’t being represented. You’re right, if you look at any of the big documentary films on autism or TV shows the focus is never… they’re just never Black right?
ODAI: Yeah or even the main spokespeople withing activist circles. And not to tar them all with a brush, but I do think that’s kind of a failure on their part. A lot of them, I don’t know if you’ve experienced this first-hand William, but it’s like they don’t really know how to engage with or try and incorporate Black Autistics more so into their groups. It’s more so that if you want to get it done and you want to see these things in place you have to get up and do it yourself and get people to make these things. Would you agree or disagree?
WILLIAM: I think I would definitely agree with you. There are Black people within Autistic activism, but it looks like they are not being given the appropriate platform. I know lots of them, we’ve got Emma Delmayne, Banisa Bob, Clarice, we’ve got quite a lot of them, but we need to be given the platform and if we are not being given the platform I think the is much more the Black community can do to lift up their own rather than to rely on everyone else to promote them.
ODAI: Yeah. It’s not even just the support, as I said and to bring it back, it’s the alienation of it that is really frustrating. So, if there was more [support] then maybe these horror stories of people getting no response in terms of diagnosis or being turned down when they need the assistance there would be less of that. You bring up Emma Delmayne as well, I also have to bring up one of the previous guests who was on the podcast – Nicki Hughes is an activist for the Romani Traveller community and Autistic people in there. I have to be honest with you I didn’t know that there were any autism activists in the Romani community myself, so that was a surprise.
WILLIAM: Yeah, I didn’t know myself until the recent Autistic Pride celebrations, that’s where I got to know about her.
ODAI: And, it’s great, I’m not going to tone that down and say that isn’t great or isn’t there, but it’s kind of a surprise to me because I’m thinking “How have I not heard about this, how has this not been more incorporated or more of a thing?” And I know, in a way, the autism/Asperger’s community in terms of activism and groups is small, but even then, it’s like you’re seen and not seen at the same time. You two understand what I’m getting at?
WILLIAM: Yes, I do.
ODAI: Another topic that I would like to touch on is, what would you say the major difference would you say there are in terms of how autism is perceived in the Black community compared to others? And what difficulties would you say there might be in terms of trying to understand and perceive it.
WILLIAM: Within the Black community I feel that everything that is out of the norm or out of the perceived normal is given a spiritual or religious interpretation or connotation. I’m not saying it is wrong, I’m not saying it is bad, but I consider its effect on how autism is seen. For example; people might say that autism is a curse, a taboo or a sacrilege, a punishment from above that should be exercised from the individual. That’s when people come up with all sorts of cures, “go see this person, this witchdoctor.” Etc etc. This has a negative impact on a person, physically, mentally, emotionally. It breaks a person’s self-confidence. I know people who have been to church, they’ve had they hands of the clergymen laid on them to exorcise the spirit of autism. And they come out, has the spirit of autism vanished? No, it has not disappeared. Have they been “cured” or “healed”? No, they haven’t. All they’ve experienced is public disgrace in the midst of the congregation. Now if autism is to be seen as the part of the person’s identity, I do not think that they are going to receive this type of psychological attack from the community.
So, one thing my organisation promotes is identity-first language, calling the Autistic individual Autistic not person with autism, so we are pushing for identity-first not person-first language. Because what the identity-first language does is re-affirms to the individual that the autism is a part of them, not something that they can be with or be without. It is not something that you can heal or cure or remove from someone. Whereas if you say “a person with autism” it means that a person can be without autism and in this case, everyone will do everything in their power to remove the autism from the person, be it by giving them excessive medication, by taking them to witchdoctors or taking them to different religious settings to be exorcised. It will not work and also it puts autism in a negative light. If you notice, many people I’ve spoken to in the Black community refer to Autistic people as persons with autism and that in itself creates a barrier. There are some people I wouldn’t even dare make a disclosure to in my community because I know that it wouldn’t go well, they are not going to understand, they are not going to give support, or rather I’m going to have lots of condemnation, I’m going to pulled down, they are going to be spreading things about me. It’s not just in my family, it’s not just in my community. I’ve spoken to different people from the Caribbean, from different parts of Africa, even from Black British communities and they’ve all said the same thing. That there exist people within their communities who would portray autism in a negative light and there is nothing you can do to change it. So, it all boils down to raising awareness and acceptance.
ODAI: I would also chip in and say that part of that condemnation is because for Black people, as far back as you could maybe even say the early 20th century, there has been a, I wouldn’t say negative – I would say friction between us and the scientific/medical community because of certain things that have been done in the past. So, they are regarded with suspicion or it’s considered more harmful than going in a more “natural direction”, or as you bring up using spirituality and the church because that’s more familiar to us. So, it’s one of those things where because of the community I come from, I’m Jamaican Ghanaian myself, I understand where that distrust does come from. But in this particular instance, for a person with a different way of looking at things or being recognised on a spectrum, you can feel ostracised from everybody and as you say it can cause mental and physical harm and it can make you feel inadequate, as if no matter what you do you’re not good enough for what other people want from you. How do you feel about this Alex?
ALEX: Well yeah, it’s really, I think interesting in that this is stuff that I have heard before in how its seen in Black, especially Black religious, communities. But it was not immediately apparent, it’s something you wouldn’t guess unless you’ve been told it right? Even after being told it makes sense where this would come from, but it seems like such a hard problem of how you shift people’s mindset on mass, right? Because obviously that situation is essentially intolerable, there’s a stigma such that people can’t even speak out about something that is heavily affecting their own lives in case they are painted as a bad person and its talked of as some sort of curse or punishment for them personally. And then all anyone cares about is trying to cure it when we know that that can’t be done. Not only is it stigma, but it’s going to be completely ineffective and not help you with any of the problems that you do have.
ODAI: Exactly. Also, Alex I just wanted to ask because you’re originally from Manchester, right?
ALEX: Yeah.
ODAI: Do you think that there’s any big difference considering how Black people are treated or seen in the North compared to the South of England?
ALEX: Well, I’m a really bad person to ask this question to because I have almost no knowledge of the Black community. I was essentially never in it, nor were my family, so I’m as much an outsider as a White person would be on this particular topic although I do find it fascinating hearing about this from afar given that was never my experience growing up.
ODAI: It’s funny you say that about feeling like an outsider because the best way I could describe my position in things, as somebody I know brought up in an interview I watched where they’re an insider, but they feel like an outsider. They’re inside the community, they recognise the code switching and some of the signifiers, but there’s very specific things and there’s a grey area you occupy that sometimes, in really specific moments it’s like people who are supposed to be your kinfolk don’t connect to that. It’s a very strange, but very real thing.
ALEX: Oh, interesting. I imagine that would be even more alienating. I guess, physically being there whilst still not being there from a more emotional perspective of not connecting in the way that you would want.
ODAI: William, I am just curious to ask you, as you’ve said you’ve had interactions with people from Africa and the Caribbean. You’ve brought up the similarities in terms of how they view autism, have you noticed any specific differences between the cultures or is it pretty much the same across the board?
WILLIAM: I would say that it varies from individual to individual, from family to family, but there are some similarities in that they are all quite spiritual people and they are quite social people. In other words, Black people are social people, they are quite social in all their undertakings. If you look at our festivals, if you look at our religious life, we like doing things together. We can be quite loud, we can be quite friendly, but if you are Autistic you don’t quite fit that image and that’s where there is a problem or it seems to be a problem. So, you might not be accepted in that community or you might find yourself struggling to be accepted or having to mask to be accepted and that is where the almost negative views of autism come to play. I’ve seen some people form the Caribbean who have been quite open to autism and quite willing to learn. I used to work with a few of them who had family members who were Autistic and they would come to me for advice and they were quite open-minded, which I was really impressed with. That kind of open-mindedness, I wasn’t getting that in my own community. So, I would say that is one of the main differences between the Caribbeans and the Africans.
ODAI: It’s funny you bring up social gatherings because, well I mentioned this before, but I always bring this up, I always feel like it’s a great example. It didn’t haven this year because of the issues regarding Covid-19, but Notting Hill Carnival, which usually happens around the end of the summer. Have you ever been to Carnival by any chance William?
WILLIAM: No, I have watched it on TV, but I have never been physically.
ODAI: I have been in the past and for an Autistic person it is not the best environment because it is an incredibly overwhelming experience in terms of the sounds systems and the floats going by and people going in different colours and everything.
WILLIAM: The sensory…
ODAI: I can tell you first hand it gives you the most splitting headache possible. I think the last time I went was sort of a thing where I was originally meant to go with somebody, but I went by myself to try and lift my spirits up because I wasn’t in a good mood that day and I went down there, I didn’t stay there for very long, but I had my headphones on so I felt that I wasn’t managing too bad. But I decided, just to be sure because my parents took me when I was much younger, but I would always complain about the noise even when I had earplugs in. This was before I got diagnosed, so it was kind of a running joke in my family about me complaining about the sound or whatever and it wasn’t until I got diagnosed that my mum realised “Oh, you weren’t joking this really was giving you problems.” It was interesting, it was validating, but at the same time I wished I didn’t get this information so late in life. I did try to take my headphones off whilst I was there, but I did it briefly because sure enough the volume of everything was just beating my temples in. I had to put them back on again and I just swiftly went home.
WILLIAM: Yeah, this boils down to education about autism awareness and acceptance because if there was more awareness in our communities our parents would have taken us seriously whenever we complained about noise or the sensory overload that we were feeling.
ODAI: Yeah, it wouldn’t be a thing where the first response is “You are making a pigs ear out of this, you’re embarrassing yourself, you have to toughen up.” Speaking of education, I felt this is something that I wanted to bring up and I feel this has been a pressing issue, especially with the ongoing events that have happened this year. It’s about experience and interactions with the police and some people would think that all the news on police brutality against black people and people who are unarmed being attacked and killed by police, that’s an American issue. But we can say from Mark Duggan and a bunch of other previous instances including the protest I was at during the summer.
WILLIAM: The BLM protest?
ODAI: Yes, the UK Black Lives Matter protest. There are many examples of [systemic racism withing the police] being a problem in Britain. I bring this up because I feel that not just because we are Black, but as Autistics, the way police officers respond to or treat Autistic people when a situation involving them can be overwhelming, can be confusing and scary and everything, and sometimes it can lead to them responding in a manner that just drives the incident into a level where it never needed to be and things can end up really harmful. So, I am curious to know, both William and Alex, what your thoughts are on this issue.
WILLIAM: Well, I sincerely believe that the justice system in this country, not just in this country in many countries, the justice system is biased and racist. Look at the case, for example, of Osime Brown. I don’t know whether you have heard of this young Autistic Jamaican man who has learning difficulties. He’s in prison, what’s his crime? His crime is not stealing a mobile phone. He went out with his friends, his friends stole a mobile phone, he tried to beg them to not steal it, but they stole it anyway. They were arrested and because he was a part of that company he was imprisoned. He was arrest, charged, imprisoned and sentenced with this law called the joint enterprise law. This legislation always works against black people. So, at the moment he stands the risk of being deported and not only that, but also, he is in very ill health. He has a heart condition and has suffered recent abuse from the prison wardens, other inmates, he is not being taken care of. So many things have happened, but not just that he is going to be deported back to Jamaica, a place he left when he was only four. So, he has no family, he is not in the position of getting a job or sustaining himself due to his learning difficulties, his family is in the UK. So, this is an example of how bad the justice system is over here. You are, I think, four times more likely to be arrested if you are Black in this country. They say justice is blind, but I do not believe justice is 100% blind. I think it works against Black people and moreover Black, Autistic people.
ODAI: That is a perfect example and especially considering as you the person in question is currently locked up. He wasn’t guilty because of what he did first-hand, he was guilty by association. It’s wrong and the fact that there is deportation also being brought into it, considering the whole Windrush scandal in this country is still a recent memory.
WILLIAM: Exactly, yeah.
ODAI: It’s mortifying to know that there’s a person going through all of this. Just being a Black person in this country, but also being Autistic, you’re getting it from all angles. There’s no safe space and I can only imagine what he is going through in this instance. In my case I thankfully have never had an incident like that, but you’re also I think it’s eight times more likely to be stopped and searched by police.
WILLIAM: Yes, that’s right.
ODAI: I say from personal experience I’ve only been stopped and searched twice in my life. I think you would understand William, there’s some people in our community who would hear that and be like “Oh well that’s ok, that’s not too bad. Two times being stopped and searched means you’re keeping out of trouble.” But as far as I’m concerned that’s two times too many. And both times I was stopped and searched, well it happened one time when I was in secondary school and I was in my school uniform. And the other time it happened on New Year’s Eve and I was coming back from seeing the fireworks with friends of all places. And the reason I bring up what I was wearing is, I don’t know if you know about this Alex but, there is a certain belief amongst, I would say, older generations in the Black community that one of the ways to not attract attention from the police is to, not dress formally, but dress in a way that doesn’t attract attention and make them assume you are a bad person or you are a person getting into trouble. And for me, as I say the reason, I bring that up is because I don’t think that was true at all. I was in uniform; I had my bag on me and I was with friends and the other time I was in my street clothes and specifically when I got stopped on New year’s I was the only one who got pulled out and got searched by them. Everyone else I know was more brought to one side and looked onwards as I was getting pat down and I didn’t have anything on me.
WILLIAM: That’s racial profiling.
ODAI: Exactly.
ALEX: Sure. It’s a bad path to walk down to be like “It’s not the race element it’s how you present yourself in a similar way” that’s the reason they might want to stop you. Its textbook victim blaming, how is that any different to asking a victim of sexual assault “What were you wearing?”, it just shouldn’t matter in that way. Ultimately, the idea that there’s a stereotypical dress sense of someone who might be engaging in criminal behaviour is just not really true and that’s just a convenient excuse to allow for pre-existing prejudice to come out.
ODAI: Exactly, and also in the case of being stopped and search and dealing with police, because of racial bias some of them are acting on the assumptions of stereotypes so they can treat you more aggressively than white counterparts. I’m sure there’s being dealing with white people who have Asperger’s where they realise they should take it easy and not try and provoke them to scare them off or maybe act aggressively in response, but they don’t take that kind of care when it comes to Black people and as we’ve seen this year on many occasions oftentimes it leads to people losing their lives in the process. Needlessly. Is there anything that you would like to comment on this William? I’m just worried that I am talking over you.
WILLIAM: You are not talking over me at all. I think that the police and the entire justice system need training to develop their sensitivity towards other ethnicities, Black and Minority Ethnic people, they definitely need more training. If the system is supposed to be fair, if there is supposed to be justice one race or one ethnicity shouldn’t be treated more favourably than the other, I’d say.
ALEX: Yeah, absolutely and I think this ties back to autism specifically. I think without training there’s a real problem with police in various situations. In their interactions they want compliance, right? That’s the main thing they are looking for and they will escalate a situation if they even have just the perception that they are not getting it the way they want. But that’s uniquely bad when put in a situation where they are dealing with someone who is autistic, somebody who might be on the verge of a meltdown, who’s been overwhelmed or isn’t being responsive in a way the police want. If their default is to escalate then even with all things being equal that’s going to lead to bad outcomes far more.
ODAI: Yes, and there’s also some cases where people are entirely compliant to whatever they’re doing and they still end up in a hassle with the police so there’s not entire way to interact with the police without something bad happening.
ALEX: Yeah, I remember I saw in the news a US story about how someone had called police to help their Autistic son and the police basically turned up and shot him. This happened about a month ago, I think it was in Utah. It was weird how shocking that story was and how simultaneously not surprised at reading that story I was. Which I guess is the worst bit. You can see how these things happen and yet they happen again and again and again and there doesn’t ever seem to be change. There’s always this kind of systemic change that you know would help alleviate these things, but you also know how it is never coming. But maybe this summer is the first time there’s a hint that maybe there’s a chance that some of these things may change in the future, which is more that I’ve seen maybe in my lifetime.
ODAI: I would definitely agree with that and as I said; I specified this was Britain because we don’t have plain closed policemen carrying firearms in this country. Even then, just because people aren’t being harmed in that one way doesn’t mean that there aren’t other ways people have ended up dead in police custody or been beaten up or anything like that.
ALEX: Yeah, absolutely. I guess it is a problem with relative measures. America is stereotypically just so egregiously awful that sure, if you put a lot of other things next to that it doesn’t look anywhere as bad, but that doesn’t make those other things acceptable. The skill is not to compare to somewhere that bad.~
ODAI: Exactly, William do you have anything to say about this?
WILLIAM: Yeah, if you compare the scale of mortalities within police custody in America to the UK for example you can say that in American the instances are higher due to their gun culture, but over here we’ve got other things that limit Black people. The bureaucratic systems limit the ability of Black people to do things like get on the property ladder, so many other things and that is what is stifling Autistic people who are Black in this country. You might look at America and think our [system] is quite good because people are not dying on a daily basis like over there, but we also have our own evils over here. And it all boils down to acceptance and education. I will never cease to emphasise this, acceptance and education.
ODAI: This is why people such as yourself I think are very, very important for this and it’s also important that people know that you’re aware and have organisations who are dedicated to doing this. I would also, as a personal recommendation for people who want to look more into stop and search stuff in the UK in terms of research and possibly defence, say look at https://www.stop-watch.org/ they are very informative on the matter. To change topic though; as self-described Autistic people, William what is it about your identity that you personally wouldn’t change, you feel comfortable in your own skin, in what ways do you feel it could be a strength? Because there’s definitely people out there who, in their existence, feel everything is stacked up against them and life would be different if they weren’t Black or they weren’t Autistic. What about yourself, when you get up and you look at yourself and you think “you know what I am content with how I am”?
WILLIAM: I would just rewind to when I was a little boy, let’s say aged 9/10, I grew up in Paris, France and all my friends were white and I wished I was white. There was no Black representation on TV, except maybe The A-Team where there was this guy B.A. Baracus who was played by Mr T, he was just about the only Black person I saw on TV the rest were all white. We had He-Man, we had Thundercats, they all looked white to me so I wanted to be white. I remember pulling the edges of my hair trying to get a fringe like my friends. I wished I was born white or that something would transform me to be white like my friends and so forth and so on. But as I grew, I learned to accept myself because eventually we moved back to Ghana where I began to see more Black people on TV, in the classroom, on the street, everywhere. When you are immersed in a culture you almost become one with the culture, you assimilate and you see yourself and you accept yourself in what you see. So, I believe that the more you see yourself in society, in books, in the media then the more you accept yourself. And if you are isolated from seeing yourself represent then you may not accept yourself adequately.
So, as I grew up in Ghana, I began to accept my Blackness, but there was one aspect of myself that I didn’t want and I wanted to change; the fact that I wasn’t social enough, the fact that I couldn’t get something to say in a conversation. I could only contribute if that conversation really interested me 100%, like it was part of my special interest, my obsession. If it wasn’t part of my obsession I couldn’t say a single word about it. I wasn’t interested in football so if anybody came to talk to me about football, they will not get anything from me. The best or most polite thing I would do is smile and nod my head, as to whether or not I will listen is debateable. So I wasn’t really accepting myself until I got to know about Autism and you know, when I learned I was Autistic I looked back at all these years where I was able to navigate the social minefield, the educational minefield, the physical minefield of my life until the age of 30-something and I realised I was actually a really strong person and I began to love myself.
Now if you asked me what I would change I would say nothing, I would not change a single thing because I love myself the way I am and this is to all Autistics or Blacks; learn to know yourself, immerse yourself in your identity. If you’ve got children who are on the spectrum for example or of an ethnic minority, let them see themselves in the movies they watch, in the cartoons that they watch, in the books you buy for them, in the dolls you buy for them. There was an experiment done a few years ago with dolls, a black doll and a white doll, I don’t know if you’ve heard of it, but they presented two dolls to a set of children and they asked them which of them is the good doll and which of them is the bad doll. One doll was white, one doll was black and almost all of the children chose the white doll as the good doll and the black doll as the bad doll. Even the black children said that the black doll was the bad one. Which of these dolls is the liar? It’s the black one. Which of these dolls is the bully? It’s the black one. Why? Because they were not seeing themselves represented so they developed a negative view of themselves.
So, once again to everyone out there, see yourself in the media, it’s the first step to accepting yourself. I buy my children black dolls, books with black characters. There’s one called ‘Black hair, Don’t Care’, I’ve got three girls and as they are reading this book, they begin to accept themselves. Even though when they go to school; they are all different, they look different from all of their counterparts, but they know that they have something of value because they have been grounded in their identity and they know who they are. If you should ask me what it is, I don’t like about myself, that I would change, I would say nothing, I like the way I am 100% because I know who I am.
ODAI: That was quite incredible there William so thank you.
ALEX: Yeah, that was amazing. I feel like I can’t even follow that, that was really inspiring.
ODAI: I have a bit that I would like to say to back up your point of the issue. I would say that media plays a big part, but this also starts at home. There’s certain things for me where I think compared to some people I know who, even when they weren’t Autistic, that I am grateful for the things that I know and the things that I feel comfortable in. There’s certain things about my own identity that I wish I knew more about, but I’ve never been embarrassed or wanted to feel different or something else. I’ve always been relatively comfortable in my own skin, of course the big picture is that there are many, many people out there who aren’t and adding the fact they are also Autistic it kind of makes them feel like “what’s going on with me? Is there something wrong with me?” and that’s not it. Sometimes it’s just as simple as you see things from a different perspective or an angle that’s more different even from the peers in your own community so to speak and that’s not something that should be beaten down out of people. The enthusiasm for some of your specialist subjects shouldn’t be beaten out of you, that should be encouraged more than anything. That’s my opinion, I think it should be encouraged, it should be celebrated, people should be pushed to reach their best and reach their full potential.
ALEX: Yeah, absolutely.
ODAI: Alex, do you think you have anything that you would like to comment or that you would like to follow up?
ALEX: Yeah, sure. One of the most interesting facets for me of the idea of why wouldn’t I change anything about my identity is that, I don’t know, pick any sort of minority identity I feel almost pierces the veil. And by that I mean, say you’re a straight, white, cis, middle class man, you can kind of live your life in this tunnel vision where you’re such the default for everything that you don’t even realise the alternatives are almost real. You hear about them, but they are so far away from your own experience that they don’t even register. And you can get so far in your life with that mindset, but if you don’t any one of those things suddenly it’s like the veil is pierced and you see the rest of reality. And I guess I’d be thankful a bit that I was born with a combination that I notice that quite early. Because I think there’s something quite sad there, imagine getting to the age 40 just not even noticing that at all. Just honestly thinking that your default experience is essentially the only one that exists.
ODAI: It’s funny you bring that up because I think not too long ago it was Prince Harry of all people posted this write-up he did about how he was shocked with the awareness of racism in Britain and how things are stacked up and how people need to be celebrated and be like no, you’re OK in this. It’s kind of its own joke in a way, that not only is he the default, he’s a royal and he’s only sort of come into this realisation because he has married an American mixed-race woman. So, even now, in 2020, this is the case.
ALEX: Yeah, it’s fascinating that people in that situation have to just have a road to Damascus moment, otherwise they’re just never going to clock any of this. It genuinely blows my mind every time I think about that.
ODAI:I think it’s interesting you bring up the veil because famously W.B. DuBois was the person who came up with that metaphor and it’s a thing of what he also described as a double consciousness where he was talking about America, but as a Black person its not just a thing of you looking at people, you have to consider how you look to other people as well. So there is this constant, not battle, but there’s this ever-present thought of am I presenting the right way, how do I look in front of these people and especially with being Autistic where one of the issues is not being able to read social cues too well. It often feels like you’re trying to make your way through a fog so to speak.
Alex: Sure, it’s interesting. What have you found to be good ways of mitigating that in your experience?
ODAI: Good ways of trying to mitigate that? It’s interesting because there are people that I sort of look to who as well as being Autistic sometimes they are Dyslexic or Dypraxic. There’s an author who I look to whose name is Nalo Hopkinson who’s Jamaican-Canadian and she’s got disabilities of her own. She’s interesting because she is a Black woman and a science fiction writer and she incorporates a lot of the iconography of the African-Caribbean into her work. I think it was Midnight Robber was the book I read and there were certain references to Cockpit County and the Junkanoo Christmas Festival which is a big thing in Jamaica and other sorts of thing in there that I was chuckling to myself where I was like “Oh I know what that is.” But not only that, it was the fact that somebody even with their issues was able to create something that was as immersive and as rich as what she did. I found it incredible to connect to, but there’s also the other example I think of Samuel R. Delaney, who famously wrote Babel-17 and Dhalgren and Stars in my Pocket Like Grains of Sand, he’s Dyslexic, but he’s also a Black, Gay author so there’s many lenses he looks through and he also questions what it means to have that identity as well. So, those people do exist, but the problem is you have to kind of find them for yourself or have somebody introduce them to you and when that happens it can be a really massive revelation to how you viewed things. It’s like there is a before and after point when it comes to learning about your identity or your background. If it’s from an early point you have kind of a personal armour around you where no matter what happens you very much know who you are and that’s not to discredit people who found out later like you William, but it’s just something that I do think about and it’s come to my mind and I think it’s very, very important.
WILLIAM: Yeah I believe it is very important. An early diagnosis makes aa whole lot of difference. If there was something about me that I could change, I’m going to have to contradict myself now, it would be for me to know that I was Autistic from an earlier age because knowing who you are at an early age removes all these instances of wasted years. I could have been much more than I am today if I had known who I am. I would have been able to specialise in what I am really strong at rather than rather than trying to please everyone else. I was trying to please my parents, I’ve been all over the place, I didn’t get much educational support whilst I wasn’t diagnosed. I’ve had quite a lot of missed opportunities in my life, so to the ethnic minority parent over here who are quite reluctant to get a diagnosis for their children I would say that the advantages, or the merits, of having a diagnosis are more than the negatives.
ODAI: OK
ALEX: Yeah I think that’s true. Even in the case of our organisation there are a number of people who consider finding out they are Autistic a life changing moment. If you spent 20, 30, 40, sometimes even 50 years trying to fit a square peg into a round hole you’ll finally know what the reason for that is and how that’s not ever really going to work the way that people told you it is going to. That’s such a huge deal for peoples lives and themselves and also why things have turned out the way they have done.
ODAI: I definitely agree with that.
WILLIAM: Me too.
ODAI: And on that note I think it’s good to stop the discussion at that point. Alex, thank you for being here and mediating and contributing to the discussion.
ALEX: No problem, thanks for having me.
ODAI: William, thank you, your contributions have been great. Is there anything you want to promote or to plug or if you would like to remind people what the organisation is you’re a part of is.
WILLIAM: My organisation is called Autistic Inclusion Meets or A.I.M, we’ve got a Facebook group and you can also follow Emma Delmayne, who is my C.E.O, at Autism Inclusion, which is also a Facebook group. We are based in Woolwich, London, but we are available on the internet. We just opened a branch in the USA. All the information is on Facebook, if you just look for Autistic Inclusive Meets you will find all the information.
ODAI: Well, that’s it. I hope you have found this an interesting and engrossing discussion and thank you for listening.
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