Autischicks: An Interview with Morenike Giwa Onaiwu
By Hope Taglich
Within the past several years, mainstream autism-centered organizations--such as Autism Speaks--have been under a microscope. Much of what is labeled autistic activism is dominated by parents of autistic children, rather than autistic people themselves; furthermore, much of it focuses on forcing autistic people to assimilate to neurotypical standards, or even on finding a cure for autism, rather than making the world an easier place for autistic people to live in. This was part of my inspiration to start the series Autischicks, a series of interviews with autistic female activists. Many autistic activists ignore intersectional issues within the autistic community; to address the needs of autistic people of color, groups like The Color of Autism (founded by the mother of Stephon Watts, a 16-year-old Black, autistic boy who was killed in his own home by the Chicago Police Department during a welfare check) and the Fund for Community Reparations for Autistic People of Color’s Interdependence, Survival and Empowerment have emerged. The latter is co-coordinated by Morenike Giwa Onaiwu, a Black autistic woman who has worked as an advocate for issues ranging from HIV awareness to police brutality to education reform. I interviewed Ms. Onaiwu in regards to her work with the Fund, her thoughts on educational inequality in America, her advice to neurotypical parents with autistic children, her frustration with the mainstream autistic community’s failure to address intersectional issues, and much more.
HOPE TAGLICH: Hi, Ms. Onaiwu. My name is Hope Taglich, and I’m a 21-year-old autistic activist. I’m very happy to interview you today, because I really like you.
MORENIKE GIWA ONAIWU: Thank you (Laughs).
HT: Would you like to get started?
MGO: Sure.
HT: Okay. So my first question is--do you feel like mainstream autistic activism adequately addresses intersectional autistic issues?
MGO: I don’t, unfortunately. I think that, in some ways, it intends to--but in reality, I think that it doesn’t. I think that there’s essentially a default which is (White). Basically, most intersections are an afterthought, of sorts. (Intersectionality) is not something that people are actively against, or opposed to--but it’s not the reality.
HT: Could you describe your work with the Autistic People of Color Fund?
MGO: Yeah, sure, I’d love to. It’s one of my favorite things to talk about! (Laughs) I’m part of the Autistic Women and Nonbinary Network, and a few years ago, we started crowdfunding for a project that we hoped would have multiple facets. The first part was what ended up being our anthology Autism and Ethnicity: All the Weight of Our Dreams, so we solicited contributions from people for that and created that.
From there, we wanted to do more. We wanted to have, obviously, the anthology as a collection of living stories, but we also wanted to have something that would address people’s more direct needs. The problem was that we didn’t really have the funds. We had a certain amount of money that we held aside from the proceeds from the anthology, but it still wasn’t enough. We were very fortunate that one of our board members, who’s now our External Advocacy and Legal Affairs director,Lydia Brown, was at that time applying for some grant funding and received some funding from the American Association of People with Disabilities, and so we were super excited because what this did was allow for us to get some additional funding.
We launched the Fund in June of 2018--so, a year after we had launched our anthology, the anthology’s anniversary. What we wanted to do with this fund is make it different than most. When people are applying for some type of help, there are a lot of questions where (an organization is) wanting documentation. They’re wanting all these forms. They’re wanting references. They’re wanting proof of this, proof of that. Because of that, we have an emergency application and a regular application, but a lot of times we find that, with autistic people--particularly autistic people of color--it’s hard to get these documents and find these. You know, we have executive functioning issues. We may not remember to fill something out, or we may not have whatever it is that they need at the moment, and so we might not be able to get assistance because of all of the red tape. We wanted to find a way; people have needs, people need help. Disproportionately--you know, the statistics show again and again and again--autistic people of color and autistic people in general have less optimal outcomes in terms of health, home ownership, education, a number of things. We thought: How do we address people’s pressing needs in a way that’s quick and fast and that’s not bureaucratic?
So we decided to use a micro-grant process so we could stay in compliance as a nonprofit organization and still help people. Let’s make it to where people could pretty much use it for whatever they want. It’s not only for category A or B. It could be for someone who wants to buy art supplies, or someone who’s launching a podcast, someone who wants to buy some technology, someone who wants to go to a conference. They want to pay for some medication, they want to go to a therapist, they want to go to a symposium training them on how to do something or (they’re) just enjoying something--a family vacation. What is it that our people might need? It often is pressing needs--rent, support through housing transition. Sometimes it might just be an advocacy or artistic endeavor--something for personal growth, or to help pay bills.
We set it up to where we put it on social media and we tried to make it as accessible as possible. None of us take a salary. We want it to be as grassroots as possible, for as much of the money to go to the contributors as possible--as long as they identify as a person of color, anyone who’s nonwhite. We accommodate multiracial, Latinx, Asian, Black people. They can be of any age to apply and they have to identify as autistic.
Basically, we will review their application. They’ll tell us what they’re looking for. They’ll tell us their preferred pronouns and their name and the method by which they would like to be paid. We usually send the funds through PayPal, which is successful for most people, but we have used other options for people. They share any other information they’d like to share with us. We ask them if they’re okay with their information either being collected or saved if we create a report, and if they aren’t, we don’t (save the information).
We meet over our regular applications once a quarter, and we meet over the emergency applications once a month. Sometimes, if there’s a pressing emergency, we meet more than that. Initially, we were trying to meet every week, every other week, but the volume of applications is too much. We’ve given over $30,000 to people in the two years that we’ve existed. I’m just grateful. I’m the grant selection chair, so I’m one of the people that helps to determine if we’re going to fund someone or not, how much (we’re giving them), and how we ought to get the money to them. I’m really happy to play that role, and Lydia plays the role of the director, doing a lot of the executive tasks for our Fund.
HT: What are some of your thoughts on education reform in America, especially in regards to racial and income-based disparities in special education?
MGO: So I think that there are a lot of problems. There are a lot. Our education system is quite broken for a number of reasons. I think that America hasn’t decided whether we truly want just rote memorization or whether we want innovative education. There’s always been racial inequality in our schools, and there’s always been disability inequality in our schools, and I think that when the two intersect it’s even worse.
Aside from the fact that the quality of education one might get varies depending on the school’s resources, there are also issues like zoning. How is the zoning drawn to designate who is at which school? What’s the turnover rate of the teachers there? Do you have a diverse group of teachers there? What funds do you have for supplemental resources and involvement in technology in the school? How are you investing in the community that the school’s located in? And then in terms of special education: How inclusive is it? Do you have a situation where you’re essentially warehousing children? Are you doing the minimum in terms of inclusion where they’re peripherally, for a few minutes each day, breathing the same oxygen as non-disabled children, therefore they’re “included”? Or are there true efforts to try to integrate the two? Often, you don’t see the latter. You have kids segregated into two groups. “These are the kids that are going somewhere in life, and these are the kids we need to keep until we shuffle them out temporarily to a facility for behaviorally challenged children or elsewhere or just keep them here, out of the way, so as not to impact our numbers.”
HT: Do you support school vouchers?
MGO: (Laughs) You know, I have a really, really contentious relationship with them. It’s a huge source of ambivalence. I’m a product of public schools, and I grew up going to public schools, and my children currently go to private school because we were failed by the public schools. I understand that a lot of quality education is inaccessible for a lot of people, and that’s why some people have suggested vouchers as the solution. My problem is that vouchers are a band-aid. They aren’t enough to fix the problem at large. Some people are saying, “Oh, we’ve got some broken schools, so let’s give a small portion of people an ability to leave those broken schools and everyone else stays in those broken schools.” I feel like the better route would be to ask ourselves: Why can’t we fix the schools that need help? Why can’t we look at the promising practices at these schools that people are flocking to by choice, and why can’t we try to incorporate that into these other schools? I understand. I think that sometimes you need a stop gap in life, and so there are issues beyond just education. There are also safety issues. I understand people need options, and unfortunately I know that the charter school movement has not gone the way that it could have in terms of being an equitable option for a lot of families with disabilities. There are issues with people being imprisoned if they try to use a relative or a friend’s address to go to a better public school. Do I pay for private school, or do I keep my child in this school and continue to fight for them just to have basic education? I guess I have to say that theoretically, I am opposed to the idea of vouchers. As a parent, I sympathize, but I think that, ultimately, (education reform) is a macro-level problem. And I think that vouchers alone can’t fix it.
HT: I think vouchers are the unholy love child of trickle-down economics and the Talented Tenth theory. I also think supporting vouchers is a way for rich people to kind of assuage their guilt about the educational system without contributing to systemic change, because that would involve paying more taxes.
MGO: Exactly, and no one wants to do that, apparently. (Laughs)
HT: You helped aid what you describe as “global research advocacy within various HIV clinical trials networks,” and you’ve also done a lot of advocacy for HIV awareness. Do you feel there are overlooked parallels between HIV activism and autistic activism? Those aren’t issues that I frequently hear about in conjunction with one another.
MGO: Yes. I feel like there’s so much that the movements have in common and/or could learn from one another, but they are very siloed. Interestingly, I know that in some parts of Canada they’ve had some inroads with HIV and autism research. I think that when you look at HIV, research indicates that there’s already a higher rate of neurodivergence (among the diagnosed)--whether that’s ADHD, whether it’s another disability, whether it’s sensory--and it’s something interesting that I think about. Some people who are undiagnosed don’t use condoms or what have you--internal, external condoms--because of sensory issues, or (HIV/AIDS) could be (contracted) in certain circumstances because it’s a transactional or toxic relationship because of circumstances also related to being neurodivergent.
On the flip side, people infantilize autistic people and don’t seem to think that autistic people ever have sex, or that we grow up, or that we need any information about independence, and so therefore people aren’t given the equitable tools that they need to be able to not be at risk. Because of the push for compliance-based therapies, we find ourselves in situations where we’re at risk. I think that there’s a lot more parallel between autistic people and HIV-positive people than is commonly assumed, and in both the HIV community and in the autistic community there’s a lot of gender diversity. There are a lot of factors that have overlap that contribute to the likelihood of being at risk for contracting HIV if one doesn’t have it.
When I look at the HIV movement and I look at the activists from ACT UP, for example, I notice a lot of advocacy that they did that really transformed the community involvement in research. As a whole, I see a lot of synchronicity between what the autistic community also wants. We want to speak for ourselves. HIV-positive people wanted to speak for themselves and not be spoken over. We often have identity-first language. We want to be presumed competent. The Denver principles in the HIV movement were a similar manifesto for wanting to be seen as human, wanting to have rights, wanting to have a say in their lives.
Both conditions are stigmatized. There’s a lot of misinformation about them both, and there’s a lack of understanding. There’s also inspiration porn on both sides where people try to say, “Oh, they’re poor, innocent victims!” or try to deprive them of agency. I think that the autistic community could learn a lot from the HIV community in terms of how to make oneself heard and assert oneself, but also to take these strange bedfellows and make them into allies.
HT: You’ve been very vocal about police violence against Black and autistic folks. Do you support defunding the police, increasing funding for police for purposes of police reform such as increased training, abolishing the police or none of the above?
MGO: So it’s complicated for me. I’ve spoken out a lot about it, but I can admit that there’s a lot of people who’ve been involved. I’ve been hearing about abolition for quite some time and I would defer to experts on that matter. I feel like there are a lot of great intentions, but those intentions aren’t saving lives. I feel like people talk a lot about the training programs or the possibility of cops meeting people in the community and they have all these things that kind of reminds me of a police version of the school vouchers (Laughs). “What can we do so that these people can be safe? Can we wear a bracelet? Can they have this on their ID?” That’s not going to fix our problem. Ultimately, we have a militarized police system in this country. You’re setting it up as a “them against us” situation because of the way police officers are trained, because of the biases that they’re already bringing into the system and because of the fact that people don’t understand the way that autistic people present. When you layer gender and race on top of that, it gets even more complicated.
At the same time, I feel like “the police” is not a monolith, either. I think that there are some communities where they are using systems of policing--I don’t even know what to call it--that are more collaborative, that are different. This might not be a model that can be replicated largely, because often these are small communities. I think there are other models to look at, but I just don’t understand putting money into systems the way that they currently are now, which is not working because the police are murdering people. I think we need--I guess a third or a fourth way? (Laughs) I don’t know what the way is yet.
HT: What do you think of the high visibility of organizations such as Autism Speaks, which partnered with a white supremacist group called Soldiers of Odin in 2017?
MGO: (Deep, resigned laugh) Autism Speaks….
HT: (Hopeless laugh) I think we agree.
MGO: You’re interesting because just yesterday someone was having a very impassioned discussion about Autism Speaks and about how people have to “get over” what happened, et cetera, and what they’ve done, when--as you mentioned--as recently as 2017 there have been problematic actions. I’m wary of Autism Speaks. I know that, right now, there are people trying to make changes from within. I know that there are people trying to help reform Autism Speaks, trying to change things. Sometimes, I’ll see something or I’ll read something and I’ll be like, “Oh, this is really good!” And then I’ll see where it came from and I’ll say, “That came from Autism Speaks?”
HT: (Laughs)
MGO: But I’m still skeptical because the master’s tools will never dismantle the master’s house. Autism Speaks was created with the premise that autism is a problem, that it needs to be cured, that it’s a burden. Yes, a number of those initial dinosaurs from Autism Speaks have left or died out. Yes, some changes have been made. But really, you have to acknowledge a wrong, you have to rectify a wrong, and you have to enact actual change. You can’t just try to keep going and pretend like it didn’t happen, and that’s what I see a lot of. It’s sad to me that Autism Speaks is the face of autism. It’s where parents are directed. It’s the resources that you see. It’s what you find when you google “autism”; it’s probably one of the top links. It’s something that isn’t really for us. It’s sad. I used to think they were a complete lost cause. I don’t know if they’re a complete lost cause at this point. Maybe, at some point, there could be something salvageable. But I think that it underscores the problem to where, aside from the fact that they’ve been very ableist over the years, they are still demonstrating an insensitivity to the racial climate that we’re in to partner with such an organization. You’re selling yourselves to the highest bidder. You are not representing the autistic community at all. I think that it’s shameful that they are as high-profile as they are, and it just kind of goes to show that biggest isn’t always best.
HT: You are a co-coordinator of the Fund for Community Reparations for Autistic People of Color’s Interdependence, Survival and Empowerment (the full name of the Autistic People of Color Fund). The use of the word “reparations” is especially poignant because it’s a reminder that reparations, while largely financial, aren’t simply financial.
MGO: Right.
HT: What are the organization’s reparative methods and goals? What does reparations look like specifically for Black autistic people?
MGO: So I think that there’s a long game and there’s a shorter one. Essentially, I think that reparations right now looks like an indication of actual change and lasting change. What reparations isn’t is the flyover grant program or what have you--something that’s created for this purpose, for this reason, for this time and then it goes away. There need to be key people of color, including Black autistic people, in visible, decision-making roles with autistic organizations. This includes both national nonprofits and local, grassroots ones. That needs to be the case now. Not two years from now, a year from now--that needs to be the case right now. It needs to be created. It needs to be prioritized. I think the autistic community needs to understand that some of the tactics that have worked with disability justice in White developmental disability spaces aren’t going to work, necessarily, in Black communities. That’s because there’s this division in the Black community with disability overall, even before you get to autism.
We’re going to need a lot more grace and space as a tactic, I think, because it is different. Some of the hard and fast principles we believe in--wanting to speak for ourselves as opposed to having parent groups speak for us, wanting to have affirming language and affirming images and not puzzle pieces--all of those things, theoretically, I agree with. But you have to start sometimes where people are and then build. You’re going to have to address much more than just concepts of neurodiversity when you’re working with the Black community when you have to look at the historical aspect of race being a key factor. I hope that today, people will be happy to identify and support individuals who are Black and autistic, but not just address autistic causes. There are certain things that the autistic community has focused on as key or important causes. When you’re addressing Black autistic people, among those need to be issues that are explicitly linked to the Black community--be it education, be it law--not just nebulous issues that impact us all, but issues that fit the experience of many in the Black community.
HT: As a parent of autistic children and as an autist yourself, you occupy a unique position in advocacy, especially because we hear a lot from neurotypical parents with autistic children but not usually autistic parents with autistic children. Is there any advice you’d offer for neurotypical parents with autistic children?
MGO: Yes. I would really, really encourage them to try to listen and learn. Often, it’s shameful to me that the biggest argument is, “You don’t have children. You don’t have children. You don’t have children.” They often tell autistic adults to minimize the value of what they have to say. As someone who is autistic and who does have children, I can say, “No, all autistic adults do not necessarily have children. But because they have been children, they have a lot more insight on this child than this parent.”
They’re basically saying, “I’m a parent, you’re not, so I’m my child’s voice.” Hmm...you’re a parent who’s not autistic. They’re an autistic person who’s not a parent. Don’t you both kind of have an area where you’re lacking, and therefore shouldn’t you hear from or listen to their perspective? There’s so much knowledge that people have, and I wish that people would be respected for what they know and not for simply being a parent who has produced a child.
I also want neurotypical parents to try to understand that it’s very demoralizing when your child is basically seen as a project--something to be fixed, something to be repaired. It’s hard to see them try to combat the way that the child inherently thinks. Parenting is a hard job no matter what your neurology is--whether you’re neurotypical and the child’s neurotypical, or whether you’re autistic and the child’s neurotypical, or whether you’re neurotypical and the child’s autistic, or whether you’re both autistic. Parenting is a labor of love, but I feel like a lot of the problems are self-induced because they’re not being accommodating of what your child needs. That’s part of what being a parent is.
I think that people always get defensive and say, “What, do you want me to lower my expectations for my child?” No. No one wants you to lower anything. Change your expectations. Be flexible. Your goal and what constitutes success for you might not work for your child. Your child might not ever want to go on a playdate with x number of children. Maybe they have another goal, something that’s important to them, and that can be important to you if you care about them and their happiness.
HT: Thank you.