Personal Journeys in Disability Rights

Unlock the secrets of impactful autism advocacy with our inspiring guest, Ben VanHook. Ben is a master's student in public policy at George Mason University and a notable disability activist and speaker. He takes us through his personal and professional journey, highlighting his advocacy efforts and vision for a more inclusive society. Discover how he has championed autistic voices on prestigious platforms like the United Nations and why it’s crucial to prioritize lived experiences over external consultation.

Join us for a deep dive into the complex terrain of privilege and intersectionality within disability advocacy. Ben and I discuss how recognizing one's privilege can be a driving force for creating equal opportunities and fostering genuine inclusivity. The conversation underscores the necessity of integrating diverse perspectives from various ethnicities, genders, and backgrounds to dismantle biases and enrich the advocacy landscape. We also stress the importance of honouring the voices that have long contributed to the movement while expanding representation.

Lastly, we shift our focus to raising societal expectations for neurodiversity. From advocating for essential supports and accommodations as fundamental human rights to the benefits of a neurodivergent workforce, Ben shares invaluable insights. Learn about the strategies for incorporating disability topics into broader events and industries and the personal journey of overcoming trauma to become a more effective advocate. Wrap up with our plans for an engaging Twitter chat to connect with our community and amplify these vital conversations. Tune in to be part of this transformative dialogue!

Chapters

• 0:00 Autism Advocacy and Inclusion Discussion
• 12:45 Intersectionality and Privilege in Advocacy
• 23:26 Expanding Expectations for Neurodiversity
• 32:14 Twitter Chat Preparation and Appreciation

Transcript

0:00

AXSCHAT Ben VanHook

NEIL: 0:00

Hello and welcome to Axschat. I'm delighted that we are joined today by Ben VanHook. Ben is an autistic policy master student at George Madison University. He's a recognised disability activist, content creator, writer, presenter and speaker. So we are delighted to have you with us today, Ben. You're clearly already doing a lot but tell us a bit about yourself in your own words please and then we can start quizzing you some more and looking forward to the conversation.

BEN: 0:28

Yes, thank you so much for having me. It's an honour to be on the show and I really appreciate our conversation and am really excited to really get into what advocacy means to me. To start out with, my name is ben VanHook. I am autistic master’s student at George Madison University. I have a background in public policy and psychology and my goal is to bridge the gap between the theoretical and the practical and create tangible solutions for different barriers that are currently affecting the autistic community, whether it's in employment, whether it's in the household, whether it's in education and educational environments that autistic people are put in. So my goal is to really come up with these tangible solutions for these very important challenges that we are facing. I have an extensive record as to speaking at different organisations. I spoke at the United Nations World Acceptance Day 2023, about disability policy. I spoke at the global ADHD summit, in 2023 as well about strengthening approaches to learning as well as universal design for learning and the combinations process and I have spoken at several universities from Stanford University to John Hopkins University about the importance of universal design in the classroom. Thank you so much for having me.

NEIL: 1:48

Great. So thank you Ben and it's really important that people who are neuro divergent get to have their own voice in these important forums. So clearly you're raising that voice. So how did you come to be engaged in speaking at the UN, for example because it's not that easy to get invites. You know, we have had the pleasure ourselves. But it's a real privilege to be part of this. So what were the things that you know made you get noticed to participate in these conversations at that high level?

BEN: 2:34

It was a huge honour to have been asked to speak at United Nations. What helped me to get noticed was telling my story over time about my experiences growing up as an Asian autistic individual and some of the barriers that I've encountered within my different intersections, whether it was making friends, whether it was different stigmas and stereotypes that I faced around being an Asian autistic. I also posted a lot about my vision of the future of lowering the unemployment rate from 85%, to having more teacher trainings in autism and other disabilities so that we are formed about neuro diversity and physical disabilities and how to support us. I've also spoken about the importance of inclusion in research, in different historically exclusive fields. And I've spoken about the importance of including us in every realm of society. So I think being able to share my vision for the future as well as ways we can get there was a really big factor in how I was chosen to speak at the United Nations in 2023.

DEBRA: 3:58

Ben, welcome to the show. I love your work. I was very impressed, when I started reading about your work and also reading your post on LinkedIn. So thank you for being on the show today. One thing that I've seen, I see hashtags like Actually Autistic. I also see a lot of sometimes a debating confusion, in the autism community about who should actually be speaking for the autistic community. I personally of course believe that people with lived experiences with autism need to have own voices and be speaking for themselves. But it's still sort of complicated because I know there's a lot of autistic groups. Some of them, some members of the autistic community like, some they don't. There seems to be a lot of controversy but at the same time, I see a lot of consultants speaking for the community of people with autism, for example and I think there are things that we know about including people with autism but I think there’s so much we don't understand whereas if we would actually be speaking and learning and hiring consults like you Ben, we could actually understand the real needs of the community. But can you just talk to some of the confusion there is in the community?

BEN: 5:21

Yes, there is a lot. People in the community come from all different lived experiences, all different backgrounds, all different intersections and they might have a different perspective on what is best for the community, how to go about solving some of the challenges that we face on a daily basis. Some of us encounter different challenges. For example, someone who is a high support needs person might have different perspective that who is of lower support needs, when it comes to autistic individuals. So I think it's important to recognise the different lived experiences and I also think it's healthy. I think having this discourse, having these conversations, validating every experience even if they don't align with our own is very important because it is -- it just helps us get more viewpoints out there. Helps us consider things we might not consider ourselves and helps us evaluate our own biases as autistic individuals and it helps us to begin to really support everyone in the community. I think the more viewpoints we have the better. So I think a lot of this discourse and confusion can come down to different lived experiences, speaking on different issues. I also think often times there are non-autistic people who tend to speak for the autistic community which is not really as helpful because I agree with you, I think that autistic people deserve our own voice. We deserve to advocate for ourselves and we deserve a seat at the table when it comes to decision making, when it comes to different policies and discussions revolving around our community because we are the people who are going to be affected by these changes and we are the only people who have really lived through the effects of these changes and who are going to live through the effects of these changes. So I think it's important that we are brought into the discussion and we are brought into the conversation. And I think it's important that we are included in every realm of society.

DEBRA: 7:25

Another point that you brought up, Ben before we got On Air, but why do you think it's so important for consultants that are actually autistic or you know, just using that hashtag, but to be also considered and included in research about people with autism about neuro divergence because I also see the community being excluded there as well.

BEN: 7:54

It is very excluded in research. I've a made a -- and there's is a few reasons for that. One of them could be a lack of a master's degree. A lot of autistic people are struggling financially and might not have the means to go to college or might not have the means to get a higher degree if they wanted to. Part of it is because of like the bias and stigma around are capabilities and capacity and there's also, often times a lack of professional development opportunities or growth opportunities within APA itself for autistic people. When it comes to different conventions and conferences, for example, they come for a very high entry fee and that's not considering how much you have to pay for like air fare and hotels and all of that. A lot of these conferences and conventions and opportunities to connect with other autistic individuals and to connect with research as a whole are just gate kept for us because of finances and countries economic status. But I've done a lot of work with APA. I was the first ever student representative at Division if 3, Autism and Intellectual Disability from 2021 to 2023. And I've seen more of a shift to CVPR, community of respiratory research, where they use autistic community and work alongside the autistic community to get to understand us better and we actually become a part of the research, not just as subjects but as collaborators. We become coders, we also become people who are heavily involved in the consulting process, to make sure that we have a less bias or unbiased results in interpretation of the results. So the work that's being done in research currently is I think becoming more increasingly aware of the importance of using autistic consultants and I've seen a little bit more of that in APA and in research.

DEBRA: 10:02

And I'll just remind everybody, please use, our individuals with lived experience with autism. But pay them and do not ask them to do it for free.

ANTONIO: 10:11

If you look at topics that we've recently observed in terms of investment in diversity and inclusion, what are the topics that made you think and worried you?

BEN: 10:27

I think is inclusion is really important and I'm worried that particularly autistic people of colour are not really being seen or heard and I'm worried that their voices are really being erased from the discussion around disability. So I'm worried about why only autistics with privilege speaking on behalf of the community and this doesn't just go for race, similar to like, similar to that, that I'm worried about low support needs, autistics dominating the conversation instead of including more higher support needs, people within the decision making process, the discussion around disabilities. So I'm worried about the voices of certain autistic populations going unheard or being erased from the public discourse.

ANTONIO: 11:23

Do you have any ideas and suggestion of how we can overcome that?

BEN: 11:30

I think one of the best ways we can overcome this is through including, like adding more seats to the table for disabled people of colour. I think it's important to offer opportunities, offer discounts for autistic people of colour to be a part of these conversations, especially as it relates to different conferences and different conventions because autistic people of colour are least likely afford these opportunities. I also think it's important to have an intersectional approach when it comes to different consulting work and hiring a representative sample of disabled people to consult on your organisation about DEI initiatives. I also think tying DEI and just seeing the overlap between the disability in other marginalised communities is really important because I think we are stronger together than any community alone and we should be united in standing up for directing old people. So I think including people of all different ethnicities, all different religions, all different abilities are really important when it comes to creating positive change for our community moving forwards.

NEIL: 12:44

So picking up on that point Ben, because we were talking about privilege before we went On Air and you just mentioned the lack of access due to you know, to some of these communities but you also said you know you're part of some of these communities. Your intersectional et cetera but you recognise your own privilege. And I think that this is the thing. Privilege is not an on/off thing. So how do we communicate about that concept and how do you sort of navigate the idea of privilege within your work?

BEN: 13:26

Yes, so that's privilege is honestly why I've gotten into disability advocacy work. I recognise my own privilege in having gone to school, in having gone to college, graduated with a degree. I recognise my own privilege in being employed. So what drives my work is making that a possibility and a probability for all people, not just me or a select few. So what drives my work is recognising and addressing my own privilege. I have also acknowledged my own privilege in a few of my posts as well and I hope this can inspire others to look inwards and recognise that like recognise what they do have that others might not have and work together to find ways to ensure that all people have access to these opportunities.

NEIL: 14:19

Yes, I think that's great. What is really interesting for me is this sort of -- there is an assumption of my privilege and I do have plenty. You know, I'm white, male, educated, all of the rest of it. But there is sometimes a temptation, I've had some conversations recently with people in the DEI profession because essentially we should be excluding people like me because of privilege, because we are white and male and we are making way, rather than actually having a broader conversation because there are things happening whereby we are sort of assigning a smaller part. It's like, we've only got so much pie we can give. So we are going to need to give it to someone who makes these criteria or you know, you know, you can't work in diversity because you're a man. We are focused on gender equity because as a man I can still support women having equality. I think that understanding privilege and intersectionality needs to still increase significantly because we can be both privileged and have you know membership of the community, if you like because I'm dyslexic and ADHD, so I have my own lived experience and some validity in there. What we should not be doing is displacing other people that have an equal right to a place at that table. So I think that it's setting more places at the table is what we need to be doing rather than deciding who gets to eat.

BEN: 16:07

Yes, we should be expanding the table. If you have 13 consultants, expand it to like 20/21 consultants because you're right, white males are also a part of the community. So their voices also need to be heard. I think the more voices, the more ethnicities and the more backgrounds we can hear from, the better the sample would be because it is more representative of what the community face. And I also think it's important because the more communication we have even if we come from, especially if we come from different backgrounds because the more we will be able to understand each other, communicate and really come to an understanding with each other. OI think communication is really important in advocacy, especially when it comes to intersectionality, so expanding the table to include white people, black people, Asian people, Hispanics, Latino people is really important so we can all work together and share our stories and our backgrounds where we are coming from and I think communication can really lead to the reduction or elimination of biases because we can all have a better and come away with a better understanding of each other than if there's only one or two different ethnicities at the table, talking on behalf of everyone. So I agree, I think we need to expand the table, expand the seats at the table instead of just choosing who deserves a spot and who doesn't.

DEBRA: 17:36

And I think, you can't go forward by starting to exclude other people. So okay, not we are going to include all of the white males with disabilities. Okay, no, that is not the way to go forwards. That is not what we are saying. We are saying and also somebody had to -- I've had these conversations es a lot about giving up my seat at the table, which I have done, many, many times and people have said no, no, no bring more chairs to the table. I also wanted to speak to people that are older and have a legacy like me. I still think there are times when we do need to give our seat up at the table to make sure more diverse intersectional candidates are also having and getting to speak. I think there are different ways we can do that. That is one thing we are trying to figure out at Billion Strong. But I do really think, it's such a mistake to say, oh Neil, you don't matter, your voice doesn't matter. Now, you've been working, Neil for 30 plus years and you've had a major, major positive impact on our community. But now just be quiet, go sit down and don't add anymore. That's stupid. It's stupid to do that. We have to consider all the intersections. As Ben was saying many times, and we've said, many times on this show, the disability community is the largest minority community in the world. The largest. Maybe you can say women are larger but that's ridiculous, women are larger than men. But regardless, if we look at it from the intersectionality and let's not forget our LGBTQ partners. Any group of people that are community that are being held back and oppressed should come together and support each other. So I think, you know, there are so many things to look back and see that we've done wrong and looking here in the States, Ben, you and I are here in the United States. I must say, I am really thrilled about the changes and the political presidency. I am very pleased. I come out very clearly as a supporter of Kamala Harris. I hope we elect a woman, a woman of colour, a women of Indian descent. But anyway, we are really, really struggling with this DEI actually, my new partner said to me, Debra, they are talking all over the news about this DEI stuff, what is that and I thought wow, clearly you have not been listening to me for a while, I said that is what we do for a living. So making diversity, equity and inclusion bad right now is startling but at the same time, something that we had to do was we had to look at each of us and break this down in little parts and say okay, Ben you identify as a male, okay, you identify as somebody that's been adopted. You identify as somebody who is born in China. Right, there are all of these different pieces of you. Oh, neuro diverse and autistic too. I think we had to break this all done into little pieces but now it's sort of time to put us all back together and to realise that being a human means that we have abilities, you Have disabilities, sometimes you're stronger at one thing, sometimes you're not. Sometimes you're brown, you're black, you're white. It is so ridiculous. We know how to make things accessible. We know how to fully include human beings. Stop putting your egos in front of everything, everybody and make it about making the world a better place. It is so scary right now in the world and I think we need these conversations and we need to highlight leaders like you Ben, that's what we do at Axschat. We find who we see that's making a difference and we try to highlight what they are doing. But the people we are putting on here are also, you all might notice to the audience, these are not selfish people, they are people like Neil and Antonio and like Ben, that are saying, all right, I see it's a mess. While you're all complaining about it, get out of the way and we are going to try to make things better. I say it's time to join us. So Ben what do you think?

BEN: 21:36

I think it's important to really see what we are doing, see where the movement is heading. And also see what actually disabled people are saying about where they want to be and you know, in five years or ten years. When I talk about disability, I usually use a timeline because people sometimes are differently bench marked. If you look in the last five to 10 years, we could say we have gotten a lot done, you know. We can say that we've had like the -- even like the last 15 years Doctors and Carers Act was passed in 1970s and 1980s, and 1990s. We've had several legislations like ADA, we've had IDEA. So there have been a lot of positive changes and come to support the disabled community in the United States. But if you look out where we are at right now, in 2024, given like the research, given the resources, the technology. Given many people coming out proudly as autistic. I would say that we are really far behind, despite what we are doing, because where we should be in 2024 was so much at disposal. I think the standards should be higher than just doing the bare minimum you know, to respect the human rights of disabled people. I think we should by nature be respecting the human rights of all people. That should not be something we celebrate that should just be something that happens. But sometimes that is seen as something to celebrate, if you hire a disabled person, sometimes that's something you brag about, even though we should be hiring disabled people to begin with. So I think we need to raise our standards as society and look beyond the bare minimum and I think that one of the ways we can go beyond surviving to thriving as autistic people.

NEIL: 23:44

I love the fact that we need to go beyond bear minimum. I spend most of my life trying to get beyond bear minimum, sometimes get to bear minimum, frankly. You know, it's a complex world. I think there was a group of the -- what we'll may be call the accessibility elders, Greg Vanderheim, please don't beat me up next time you see me, but they created a group called raising the floor and that really just sums what you were talking about, which is that people only go to the bare minimum. So what do we need to do, we need the raise the expectation as to what the bare minimum is. I would love, you know, some people do go beyond but if we think about how organisations work and there is an element of cynicism there, we need to raise that floor because that's what most organisations will aim for, by default because they are satisfied.

BEN: 24:49

An example that could be with accommodations, organisations could tag themselves as inclusive or providing commendations but accommodations should be provided that should be accommodations, at least the way I see it, accommodations, I see them as basic human rights. I see them as something that's essential to function in a society that wasn't built for our needs in mind. So I think that by providing us with accommodations, organisations are just providing us with our basic human rights. What we need to survive in the workplace. Nothing more than that. So I think we do need to raise the ceiling, I think we need to raise the floor as well. I think that we need to recognise that we can do so much more as a community, if we are given the supports we need and I think it's important that we raise the bar and raise the standards. A lot of disabled people, including myself, I'm also part of it. I have thanked people in the past for providing me with accommodations and that's an example of how I myself have sometimes been stuck in is this mentality of I should be thankful they're actually supporting me. When in reality, I should be expecting them to provide me with these accommodations as a human being, instead of just being grateful for being supported as a person.

DEBRA: 26:20

Powerful.

ANTONIO: 26:24

I was researching, we have been using the term community, but at the same time, you know how we also find ways to welcome other people to be more engaged with us and don't be afraid of talking or coming talking to us because they might made some mistake online when they use a certain word or when they engage in certain terms and at the same time, also on that, how can we, you know we do a lot of events more community driven, in relation to accessibility and disability but how are able to find ways to get voices at other events at other places, where usually people don't talk about the topics that are very close to our hearts.

BEN: 27:18

So I can answer those one at a time. So for the first question about community. I think it's -- it can be really difficult, especially because I and I know quite few others in the disability community have a lot of trauma and we've often times come from, had a background of abuse and bullying or these negative experiences, so sometimes it can be really hard not to be trigged by a certain word or certain phrase or perspective one might have. So it can be really difficult, it's something I am still trying to learn myself, how do I become more open minded. How do I heal from my trauma so I can be the best advocate I can and welcome in people from our community and support our allies as well. How do I get into a position where I can trust our allies have the best intentions in mind for our community. That is something I'm still trying to figure out myself, so I don't have the best answer for that. For your second question, what was your second question again?

ANTONIO: 28:31

You know we do a lot of events that focus on the topics that are close to our heart and close to our community but how do we break that and be more visible in places where diversity and inclusion are not discussed. I am talking like technology events. Other events that are not necessarily the usual places with where we talk?

BEN: 28:57

That's an interesting question. I think it's important that these different locations know the benefit of neuro diversity and one of the ways we can really push that is by saying your workplace might already be neuro diverse. Your workplace probably already has neuro divergent people working in it. So what we are talking about when we are talking about disability actually matters, when it comes to your current staff, when it comes to supporting your current staff and your future employees because there are a lot of people in this country and in the world that go undiagnosed or go misdiagnosed or might not have the means to get a diagnosis in the first place. In the United States, 1 in 36 children are diagnosed as autistic, in 2024 but that's likely an underestimate because of the amount of people who might be misdiagnosed, particularly females because the symptoms present a bit differently within females and males. So I think it's really important to really push to these employers that neuro divergent people are probably already working at your organisation and it's important to support neuro divergent people at your current workplace. I usually don't like using this example because I think we should really hire neuro divergent people anyways, but there is a business case for disability and how hiring a neuro divergent workplace, workplaces are much more efficient, that's been shown by several studies. They are much more likely to engage in new practices. They are more likely to be innovative and have innovation. They are also more likely to have financially stable or neuro divergent workplaces are associated with financial stability at different organisations. So there are benefits to the workplace when it comes to neuro divergent people but I usually don't like using that because I think we should, by nature of being human be employable.

NEIL: 31:09

Excellent. All really valid points. Sometimes I think you need to make financial arguments in business because they are there to make money. At the same time, you know cognitive diversity and diverse ways of thinking are extremely important because homogeneity and having everybody recruited for team fit because everybody is the same. Everyone looks the same and thinks the same, actually you know, that causes group think and group think was the thing that brought us to the edge of nuclear annihilation. It was group think that brought us the Bay of Pigs. So it goes beyond business, the need to have neuro inclusive communities and everything else. So thank you for the work that you're doing. It would be great if you can share the studies and so on. Maybe we can develop the questions, so that you can share them as part of our Twitter chat as we bring that social media. It remains for me to thank our friends and sponsors, Amazon and My Cleartext for keeping us On Air and captioned and thank you, once again, Ben for a great conversation.

BEN: 32:40

Yes, thank you so much and I look forward the Twitter chat. Thank you for having me and I really appreciate this opportunity.

NEIL: 32:48

Wonderful. Thank you.