The letter below, written in May 2021, is directed to the ASAN Board of Trustees and its senior staff, not frontline staff members who bear no responsibility for making organizational decisions and changes.
***Please note that there is also a June 2021 Follow Up Memo to this Open Letter:
Dear Autistic Self Advocacy Network (ASAN) Board of Trustees and Leadership,
PLAIN LANGUAGE SUMMARY: Morénike Giwa Onaiwu and Cal Montgomery are writing in May of 2021 to the people who lead The Autistic Self Advocacy Network (ASAN). Some of those people are the Board of Directors. They are volunteers. They meet every 3 months to look at what ASAN is doing and decide if anything needs to change. The other people work for ASAN. They are ASAN’s leaders. They decide what ASAN staff will do, and how they will do it.
As you know, both of us are former Board members. Morénike served as Vice Chair and, later, Cal as Chair. And we have both resigned.
PLAIN LANGUAGE SUMMARY: Morénike and Cal used to be part of the Board. Morénike was Vice Chair. Cal was Chair. We both decided not to do that work any more.
We are currently watching many of the rising generation of promising leaders give up on “the autistic community” in despair. We cannot blame them. But it is a cause for immense grief and demoralization. And therefore we are attempting a public “call-in” of people we like and respect, with whom we hope to continue to work, who have labored hard and made important strides, because our more private efforts have failed. If we, who are experienced advocates and activists, who have amassed a certain degree of credibility and who have been granted more access to opportunities to shape our community’s shared work than most people can hope for, have failed at working from within to make progress on critical course correction, then we cannot trust that those picking up the task are in a position to succeed without our support.
PLAIN LANGUAGE SUMMARY: Right now, a lot of people say they are “giving up” on the autistic community. They are going off to do other things. We understand why they are doing this. But it makes us very sad. We believe those people could do amazing things that could truly help the community. We like ASAN’s Board and leadership. We respect them. But we think we need to write this letter now. We were more polite before. But they didn’t listen to us. We don’t want that to happen to anyone else.
Please understand that our faith that a truly just world can, will, and must be achieved is unshaken; but it will not be achieved by our generation, and the longer it takes, the more people will never have the opportunities that should be their birthright. Therefore, sustaining the hope and faith of those we depend on to take the mic and bring us further toward our shared goal is a responsibility we consider sacred.
PLAIN LANGUAGE SUMMARY: We believe that someday everyone in the world will be treated fairly. But people our age can’t do it by ourselves. And the longer it takes to make the world fair, the more people will be treated unfairly. So it is important to make sure the people who haven’t had a chance to lead yet can also believe that one day they will be treated fairly.
In the introduction to their 1993 book, Words That Wound: Critical Race Theory, Assaultive Speech, and the First Amendment, Mari J. Matsuda, Charles R. Lawrence III, Richard Delgado, and Kimberlé Williams Crenshaw wrote, “Racism is endemic to American life. Thus, the question for us is not so much whether or how racial discrimination can be eliminated while maintaining the integrity of other interests implicated in the status quo such as federalism, privacy, traditional values, or established property interests. Instead we ask how these traditional interests and values serve as vessels of racial subordination.”
PLAIN LANGUAGE SUMMARY: In 1993, Mari J. Matsuda, Charles Lawrence, Richard Delgado, and Kimberlé Williams Crenshaw wrote a book about words that hurt people. In that book, they told readers that racism is everywhere in America. So they don’t want to ask, “How can we make sure people of all races get treated fairly?” but also say “We should keep doing things the same way.” They want to know how the way we do things is unfair to people of color (PoC).
In 2020, Matsuda, who with Lawrence co-authored the 1997 book We Won’t Go Back: Making the Case for Affirmative Action, tweeted:
“People have crawled their way to understanding racism is systemic. Time to push:”
“The opposite of systemic racism is affirmative action.”
“If your workplace is dragging you into this convo, tell them you are not participating unless goals and timetables are on the agenda.”
PLAIN LANGUAGE SUMMARY: Mari J. Matsuda is an expert on affirmative action. Affirmative action means changing the way we do things to give PoC a fairer chance. In 2021 Mari J. Matsuda told people on Twitter that we now understand racism is systemic. That means the way we do things means PoC get treated unfairly. Nobody has to try to make things unfair. They just already are. She said that if you want to fight racism, you have to do affirmative action. And she said that if people’s jobs ask them to work against racism, they should make sure everyone knows what the goals are and everyone knows when to expect those goals to be met.
We must, in other words, seek to understand the ways we have participated in the forms of subordination we are seeking to end, and we must place the highest value on changing the ways we perpetuate that subordination. Good intentions are not enough; generations have died waiting and struggling for justice. We must look at our elders and understand their incalculable loss. We must look at our youth and understand the urgency of their need for real equality. And we must act.
PLAIN LANGUAGE SUMMARY: This is Morénike and Cal saying what we think again. When we read those things Mari J. Matsuda and the 3 other people wrote, we think, “If the way we do things means people are treated unfairly, we need to understand how that works, and we have to agree it is very very important to change the way we do things. Then people can be treated more fairly.” We also think, “Wanting to do better is not enough. Old people have waited their whole lives for fairness. Young people need a fair world to grow up in. We need to really fix this!”
Like other organizations in America, ASAN’s staff and Board, especially the leadership, do not reflect the diversity of the whole community we seek to serve, and therefore cannot adequately represent the whole community. This is not a momentary lapse. Nor is it a coincidence. It is the result of structural patterns that systematically privilege some people over others.
PLAIN LANGUAGE SUMMARY: When we look at the people who work at ASAN, especially the senior staff, and at the volunteers on the Board, we don’t see every kind of person there. We believe in “Nothing About Us, Without Us.” If we are not going to listen to people about what they want and need, we can’t tell those important things to anyone else.
We point this out not only in the name of equity, but of excellence. As Jarell Skinner-Roy has pointed out in his essay “Dismantling White Supremacy in Nonprofits: a starting point,” “Contrary to what white supremacy teaches us, we are not losing quality or excellence by striving for diversity, equity, and inclusion within our organizations. Excellence is not possible without these pillars.” The community of Black people with intellectual disabilities has produced advocates of the caliber of Lois Curtis and Roland Johnson. The front line staff of ASAN are excellent; however, we simply cannot afford to fail to offer the coming Curtises and Johnsons their turn at the mic.
PLAIN LANGUAGE SUMMARY: Including everyone isn’t just about being fair. It’s also about being really good at what we do. Lois Curtis is a Black woman with an intellectual disability (ID). She fought hard to help people get out of institutions. Roland Johnson was a Black man with an ID. He became President of an important self-advocacy organization. He helped people make their own decisions. Not everyone can do these things. The people who work for ASAN now are wonderful. But we need people like Lois and Roland too, so we have to include everyone.
We know, and respect, a number of the staff and Board at ASAN, and think they are dedicated, hard working individuals who care deeply about the work they are doing and are an asset to our community. We also recognize that although racial and cognitive diversity among ASAN personnel are sorely lacking, other forms of diversity are abundant: the majority if not all of the ASAN staff have marginalized identities (in several cases, multiple marginalizations, including gender, sexuality, religion, etc.). Thus, even those who identify as and/or are perceived as white and thus have privilege in that regard, and even those who have benefitted from access to academic education are still, sadly, all-too familiar with the effects of bigotry. We also know that progress has been sought, and made.
PLAIN LANGUAGE SUMMARY: We know some of the people who work for ASAN or are on the Board. We think they work very hard. We think they care. We think they help our community a lot. We also know that though there aren’t enough PoC or people with ID getting those chances — but the staff and Board all know what it’s like to be treated unfairly in America.
However, that does not change the fact that ASAN has been, and continues to be, led primarily by white people without intellectual disabilities and that needs to change – period. It also does not change the fact that ASAN’s white Board members have repeatedly engaged in racial and ableist microaggressions that silence PoC and ID Board members, including asserting their belief that their input is more valuable, invalidating others’ perspectives and accomplishments, failing to obtain input from certain Board members before decisions are made, and tokenizing PoC members (i.e white Board members feel entitled to PoC Board members’ labor in discussions about race, racial justice, and disability justice).
PLAIN LANGUAGE SUMMARY: But the people in charge are still mostly white and mostly don’t have ID. That needs to change! Also even when PoC and people with ID do get to be there, white people without ID are often rude. They are often unfair. They leave people out. They make it very hard for people to speak for themselves.
This has created a toxic Board culture for PoC and those with certain cognitive disabilities which has driven Board members away – there has been a mass departure of ASAN Board members, particularly within the last year with the loss of approximately six Board members including two ASAN Board Chairs, a Vice Chair, a former Vice Chair, and other respected Board members. These situations have also demoralized current PoC Board members. This degree of leadership churn means that there is no consistent ownership of the work.
PLAIN LANGUAGE SUMMARY: It means PoC, people with ID, and some others get hurt. They can’t do their jobs well. In the last year, about 6 ASAN Board members have left. That’s a lot. It makes it hard for PoC still on the board to hope. It’s also hard to keep having so many people come and go, and still keep getting the work done.
Unfortunately, ASAN has ignored several solutions that have been suggested by PoC and ID Board members that could have helped to rectify these issues, including:
- bringing in a racial justice/disability justice trainer to educate all Board members
- increasing the diversity of ASAN’s staff to have better BIPoC and ID representation
- revising ASAN’s bylaws to clarify and strengthen the role of the Board
- committing formally to a strategy to increase meaningful involvement of PoC on the board
- utilizing an external facilitator/moderator for Board discussions involving race
- formally and promptly implementing the racial “Diversity Equity and Inclusion” plan begun by the Board and outside consultant
PLAIN LANGUAGE SUMMARY: Board members have had ideas to try to fix these problems. But other people didn’t listen. Some suggestions were:
- asking someone to train the Board so they have better skills for working together fairly
- hiring more staff who are PoC and staff with ID
- changing the rules so the Board members can have more of a say in things
- making a plan to include and support PoC Board members, and agreeing to follow that plan
- following the plan the Board is making to be more inclusive and have more people of different races on the Board.
In addition, Cal only agreed to serve as Chair on the condition that a plan for transition of that role to a PoC, preferably BIPoC, leader be created and that implementation begin immediately. The community did not need to see another white face in a leadership role. That condition has not been met.
PLAIN LANGUAGE SUMMARY: The ASAN Board asked Cal to be Chair. Cal hoped that an autistic PoC could be the Chair. Cal especially hoped someone Black or Indigenous could have the job. Cal promised to be Chair for a short while if the ASAN Board promised to quickly make a plan for a PoC Chair to take over and to follow that plan. But the plan never happened.
Advocacy is a team sport, and while we do not expect Board members’ concerns and proposed remedies to be uncritically accepted, we do expect them to be promptly and respectfully considered. That has not been our experience and, observing the recent exodus of BIPoC Board members and Board members with ID, we do not believe we are alone. ASAN Board and staff agree that a more active and involved Board is needed to support the front-line staff in their efforts, but we have repeatedly watched as Board members’ efforts to step up and do that work have been thwarted time and time again. Thus, ASAN is engaging in a manner that has discouraged and essentially run off a number of its most marginalized Board members and little to no effort to conduct exit interviews with these Board members was made as they left, which has continued to perpetuate silence and lack of transparency around their concerns.
PLAIN LANGUAGE SUMMARY: Autistic people trying to make the world more fair are like a team. We know that when you are part of a team everyone is not going to agree with other people’s ideas. People need to listen and think about other people’s ideas even if they decide not to use the ideas. This has not happened with the ASAN Board. We think that this is part of the reason that so many people who have ID and are PoC keep quitting the Board. Also even though everyone at ASAN says the Board should do more to help, they don’t let Board members help when they do try to do more. Because ASAN does not ask Board members why they are leaving, this keeps happening.
Not only do we believe that ASAN should, after consultation with the Board members, implement the suggestions listed above as soon as possible, we also believe that ASAN urgently needs to evaluate how much of the organization’s traditional way of operating, culture, and practices function to preserve unjust hierarchies and make changes accordingly. This will require a willingness to discard old and counterproductive ways of doing things in favor of practices designed and maintained to be meaningfully inclusive. It will also require explicit goals and timetables; and it will require greater transparency both within the organization and with the community whose interests it exists to serve.
PLAIN LANGUAGE SUMMARY: We think ASAN should listen to the suggestions for fixing these problems. ASAN also needs to stop and think about the way they have been doing things. ASAN should figure out how to change things to make them better, even though it can be hard to change. ASAN needs to make a plan, pick a time, and stick with it. They need to tell ASAN Board, staff, and volunteers, and tell people in the community, what’s going on so everyone can decide what they think.
Moreover, it will require a serious reassessment of the massive power imbalance between ASAN, an established and funded nonprofit led by people who are deservedly respected, and the unfunded advocates and activists within the community whose talents and efforts have not been equally rewarded. This includes, but is not limited to, acknowledgment of how, in light of this dynamic, ASAN’s actions have at times created discord and caused harm, even if unintentionally, such as in the recent incident with ASAN’s “Start Here” guide.
PLAIN LANGUAGE SUMMARY: ASAN is an organization that has been around for a long time. They have been given money to pay for the work they do and they have many people who work for them and who volunteer with them. People know about and respect ASAN a lot. There are autistic people who also care a lot and try to help, but not that many people know who they are and they usually don’t get paid. ASAN should be careful about what they say and do because there are so many people who listen to ASAN. But ASAN has not always been careful, so people have gotten hurt. There were some things we will talk about soon that happened a few months ago when ASAN created a booklet to help parents who have autistic children. Some people were hurt.
Our different backgrounds, including Cal’s experience in Autism Network International and Morénike’s experience with BIPoC autistic parents and the non-autistic parents of BIPoC autistic children, mean that we know that there are multiple, independent, parallel traditions that express things similarly, and we do not believe that ASAN engaged in plagiarism when writing “Start Here.” Nor do we think that the individuals most closely involved in the creation of this guide (which include BIPoC autistic individuals affiliated with both ASAN and the Autistic Women & Nonbinary Network (AWN) would knowingly violate another community member in such an egregious manner.
PLAIN LANGUAGE SUMMARY: Cal and Morénike have worked with different autism groups that have many families in them. We have heard and read lots of stories and we know that a lot of people come up with the same ideas even though they have never met one another. There are people who believe that ASAN stole other people’s words, pretended that ASAN wrote them, and used these words in the parent booklet without permission. We know some people think that, but we don’t think ASAN did that. We also know a lot of the people who helped put this parent booklet together. From what we know of them, we don’t think that they would do something so terrible to someone else.
That said, we also believe that the charges of plagiarism were made in good faith, and that the similarities between “Start Here” and #AutismMoon, by an Indigenous autistic writer known as Autistic, Typing, had the impact of pain and a reinforcement of the historic devaluation of the contributions of BIPoC autistics. We seen no evidence that the staff have had adequate support — both in crisis preparation and then in crisis leadership — to approach a situation like this by ensuring critics’ concerns are heard and conveyed to leadership, by strengthening relationships with those most harmed, and by considering what changes may be needed. Without that support, people frequently default to a mindset that they are under attack and need to defend themselves. But that defensiveness can make things worse. We are concerned and disappointed by how ASAN’s heavy-handed legalistic response and insistence on not acknowledging the impact of their actions have upheld the historic silencing and devaluation of the work of BIPoC autistics.
PLAIN LANGUAGE SUMMARY: We understand how other people can think that. There is a poem called #AutismMoon that was written by an autistic person who calls herself Autistic, Typing. When you read her poem and when you read the parent booklet, there are some words and ideas that are a lot like each other and seem to say many things that are almost the same thing. When the parent booklet came out, Autistic, Typing wrote on Facebook that she thought ASAN stole her words without her permission. Many people read what she wrote. There were people who agreed with her and there were people who did not agree with her. We believe that Autistic, Typing was saying what she believed was true. We understand how and why she felt that way and why she wrote about it. We don’t think she was trying to cause problems with what she wrote. We know that there have been many, many times when people ignored autistic PoC and also many times that people stole their work. We understand that ASAN felt bad about what Autistic, Typing wrote. But we don’t like the way ASAN handled things. We think they felt attacked. We think they fought back. But we think they should have listened. ASAN wrote a post on Facebook about what Autistic, Typing said. ASAN wrote that they talked with their lawyers and they did not do anything wrong. Many people were upset about what was going on and wrote posts on Facebook about their thoughts and they didn’t like that ASAN was not answering.
ASAN’s response was not that of a community organization conscious of its relative power and attentive to the concerns of the community. It was not a response consistent with experience with and commitment to anti-racist work. It did not have the effect of building and strengthening the community as a whole, but rather of reopening old wounds and reinforcing old hierarchies. The advisors you listened to put ASAN’s interests before those of the community ASAN exists to serve. And we believe the consequences of those decisions will have long-lasting effects on individual autistics, on marginalized autistic subgroups, on the community’s long-term interests, and on ASAN’s reputation and efficacy.
PLAIN LANGUAGE SUMMARY: We understand that ASAN did not want to say that they stole something. We don’t think they needed to say that if they didn’t steal. But we do think that they can say they didn’t steal, and still listen to how people felt and what they thought. ASAN handled the situation in a way that made things worse and hurt many people. Most of the people have been hurt many times in the past. When they get treated this way, they sit to give up.
An equally worrisome matter exists regarding concerns that Jae Casper Ross, a non-binary autistic advocate who died recently, alleged until their death that they designed the symbol ASAN has used for years as one of its logos yet never received public recognition for its creation; this is an unacceptable offense if it is true, and whether or not it is true, that advocate deserved to be heard and responded to.
PLAIN LANGUAGE SUMMARY: An autistic person named Jae Casper Ross created a design. Jae thought ASAN copied that design for one of their logos. Jae thought that ASAN should give Jae credit for their design. Jae felt sad and hurt for many years because that didn’t happen. We don’t know if Jae was right, but we think people should have listened to them.
It should never be required of marginalized people — or, when representatives of marginalized groups are wholly absent, those trying to function as their allies — to shoulder the burden of liberation alone. The loudest voices and those with the greatest access to opportunities to learn and lead must not be privileged over those in our community who have faced more barriers.
PLAIN LANGUAGE SUMMARY: It’s not right for people who already have a lot of struggles in life (or for people who are working with them for help) to have to do all the work. It’s also not right for people to only respect and/or care about certain groups and/or people. We should listen to everyone and share the work.
We understand that these things cannot be achieved overnight. We understand that the creation of ways to live together as equals is painstaking work. We also believe that far more urgency, effort, and skill than we have experienced is required. We have shared these concerns privately on more than one occasion, have offered suggestions, and have, for lengthy periods of time, waited hopefully to see ASAN address these issues – only to be disappointed yet again.
PLAIN LANGUAGE SUMMARY: We know that it takes a long time and a lot of work to change things. But it also doesn’t seem like ASAN is trying very hard. It also doesn’t seem like they are truly listening because we’ve asked about this a lot and nothing much has happened.
Please understand that this open letter is a desperate cry for much-needed change. Our suggestions and criticisms are meant to be constructive, not to attack ASAN — and especially the core staff who do not set the priorities but work incredibly hard to implement them — nor to invite others to do so. In both our personal and professional opinions, ASAN has done important and necessary work of measurable benefit to many, including BIPoC, people with intellectual disabilities, and others who have been marginalized within the autistic and larger disability communities – critical work that is not always adequately recognized. We do not think that the extent of ASAN’s efforts through the years (including but not limited to much-needed policy work) are as well understood by nor as easily articulated to the public at large because many are behind the scenes, but lack of visibility around these particular efforts does not erase the truth of the larger picture.
PLAIN LANGUAGE SUMMARY: We want ASAN to make changes. But we are not attacking ASAN and we don’t want people to use our letter as an excuse to attack ASAN. We really don’t want anyone to attack the people who work there but don’t make the big decisions. ASAN has done a lot of important things and has helped the community in a lot of ways. ASAN’s work has made things better for PoC and people with ID and many other autistic and disabled people. ASAN does a lot of work that people don’t know about and so many people have no idea how many important things ASAN has done and is doing. They only see a small amount of what ASAN does.
Despite these accomplishments, ASAN has a great deal of growing to do with regard to its engagement of PoC disabled and non-disabled communities – and within that realm, with the Black and Indigenous communities in particular – and also with the intellectual disability community. These are not arbitrary matters that can continue to languish with little movement; as one of the world’s oldest autistic-led organizations and likely the most visible, ASAN must change these things.
PLAIN LANGUAGE SUMMARY: ASAN is one of the oldest organizations in the world that is by and for autistic people. It is an organization that a lot of people know about. So it’s very important that ASAN make important changes and do a better job working with PoC and their communities and also people with ID.
The dynamics of things such as disability identity and who’s “at the table” (and what they are enabled to do once they are there) are vastly different with PoC and people with ID than they are with white people without intellectual disabilities. It’s complicated and messy and some of the tactics one might be accustomed to are not only ineffective, but possibly inappropriate and even insulting.
PLAIN LANGUAGE SUMMARY: For these changes to work, ASAN can’t keep doing things the way it has done them in the past. Those things work for white autistic people without ID. They don’t work with PoC and with people with ID and sometimes they cause even more problems and make things worse.
We both believe that an advocacy organization’s value is derived from and measured by its service to its community. Its whole community, without exception.
PLAIN LANGUAGE SUMMARY: Everyone matters in a community, and what matters most about an organization is helping all of its people. Other things about the organization are not as important as this is.
We believe ASAN is sincere and truly does want to do better at serving the whole autistic community, without exception, but we must note that we have not seen the concrete progress without which sincerity falls short. Continuing to do the same things results in the same outcomes, and while ideology and ASAN tradition have been inarguably vital to the progress that has been made, anything that stands in the way of real equality for the whole community must be something we are prepared to question, challenge, and discard.
PLAIN LANGUAGE SUMMARY: There are a lot of things we want ASAN to change. We think ASAN wants to do better. But we can’t wait forever! ASAN is used to thinking a certain way and doing things certain ways, but those things are going to have to change.
In her speech at ASAN’s 2017 Gala, Executive Director Julia Bascom said, “My community is a part of the disability community, and we will continue to show up and bang on the door until we’re let in.” We love those words. We love the passion and commitment behind them. And now we say to you: those autistics who are marginalized within the autistic community are nonetheless part of the autistic community, and we will not stop banging on the door until the whole community, without exception, is welcomed in and treated as equals.
PLAIN LANGUAGE SUMMARY: ASAN has an important event every year called a gala. Thet give awards to people who have done a lot to help the autistic community. They have dinner together. Because people pay to come to this dinner, ASAN is able to use the money from the event to help pay for a lot of its work to help the community. In 2017 Julia Bascom, who is ASAN’s leader, gave a speech. In that speech she talked about how autistic people, including autistic people with ID, are working to be included by other people with disabilities. Even when other disabled people don’t make autistic people feel welcome, we don’t give up. We keep trying. Julia’s speech made very important points and we agree with her. And we are saying in this letter that just like autistic people won’t give up and will keep trying to be included in the disability community, autistic PoC and autistic people with ID will also keep trying to be accepted and will not give up.
A radical call for equality cannot be effective without the radical practice of equality. We welcome the opportunity to engage with ASAN and the community in an open dialogue about specific, measurable actions that can be taken to help usher in a new era of positive growth.
PLAIN LANGUAGE SUMMARY: If we want the world to accept and respect us as autistic people, we need to make sure that we are accepting and respecting all people. We hope that ASAN will be willing to talk about these things with us and we hope people in our community will also want to discuss these things. We want to talk about this publicly so many people can participate and listen, and we want to make sure that actual change happens instead of just talking about change with no real action. We want everyone in our community to move forward in a positive way.
In love and solidarity,
Morénike Giwa Onaiwu
May 30, 2021