Autistic Self-Advocacy Network ASAN logo in the middle of white graphic. In the 4 corners are people of color protesting. 2 are holding microphones. One is typing. The other is holding a sign saying BIPoC

Call for Solidarity with Autistic BIPoC and Autistic People with Intellectual Disabilities – Memo

Demands presented to the Autistic Self-Advocacy Network (ASAN) Ahead of their June 20 Board of Trustees Meeting

Updated: Sunday, June 20, 2021, 11:45 AM. These demands now match those on this website under the name “Hear Our Cry”: https://morenikego.com/Memo-to-ASAN-2021/

To: Meg Evans, Autistic Self Advocacy Network (ASAN) Board of Trustees Secretary

Cc: Current ASAN Board of Trustees; Julia Bascom, ASAN Executive Director

From: A collective including:

Morénike Giwa Onaiwu, former ASAN Board of Trustees Vice Chair

Cal Montgomery, former ASAN Board of Trustees Chair

Oswin Latimer, former ASAN senior staff

Lydia X. Z. Brown, former ASAN staff

Finn Gardiner, former ASAN staff

In addition to: Anonymous collective of former ASAN Board and Staff

We, as a collective, would like to acknowledge that not all of us have personal knowledge of all the facts stated, but we stand united in our demands.

Date: June 17, 2021

RE: Follow Up Memo Regarding Recent Open Letter and Related Concerns

Dear ASAN Board of Trustees and Executive Director Julia Bascom:

We present this memo containing several demands on June 17, 2021, ahead of the Autistic Self-Advocacy Network (ASAN) June 20 Board of Trustees meeting. These demands are a response to recent events where ASAN has repeatedly harmed and silenced autistic Black, Indigenous, and People of Color (BIPoC), as well as autistic people with intellectual disabilities. These events are summarized below, followed by the six demands. We respectfully request a public response from ASAN by COB on July 1, 2021.

Summary of Events Regarding the Autistic Self-Advocacy Network Leading Up to These Demands (April 2, 2021 to June 17, 2021):

(Please note that this part of the memo is solely written by MGO, Cal, Oswin, & Lydia. Neither Finn nor the anonymous contributors have expressed commentary on the April events.)

On April 2, 2021, “Autistic, Typing,” an indigenous Ojibwe autistic parent of autistic children, alleged ASAN stole their words from their post #AutismMoon, pretended that ASAN wrote them, and used these words in a booklet Start Here: a guide for parents of autistic kids without permission. While the authors of this document do not believe that intentional plagiarism occurred, we believe that the original charges of plagiarism were made in good faith. We agree that the similarities between Start Here and #AutismMoon had the impact of pain and a reinforcement of the historic devaluation of the contributions of BIPoC autistics, many of whom spoke out in support of Autistic, Typing.

In response to this criticism, several of us feel that the tactics that ASAN utilized, including legal intimidation and widespread deletion of public comments, were heavy-handed. This was done under the guidance of an all-white crisis communications firm (Bernstein Crisis Management) ASAN hired to help them silence Autistic, Typing and their allies. This led to further pain from the BIPoC community, who continued to speak out.

(Here is a response to the Autistic, Typing incident by a co-author of this letter, Oswin Latimer, an autistic Choctaw indigenous person and former ASAN employee.)

ASAN’s response to criticism of Start Here by Autistic, Typing and others led to an outpouring of criticism of ASAN of not only the incident itself, but of how the organization has harmed autistic BIPoC people as well as people with intellectual disabilities both recently and historically. This led to the resignation of the ASAN Board chair Cal Montgomery, an autistic person with intellectual disabilities.

Cal’s resignation from ASAN occurred only seven months after the previous ASAN Board Chair Reyma McCoy McDeid, a Black autistic woman, resigned from ASAN citing racial concerns. The month prior to Reyma’s resignation, Morénike Giwa Onaiwu, a Black autistic person, had resigned as ASAN Vice Chair primarily due to racial concerns.

Following this, Cal Montgomery and Morénike Giwa Onaiwu issued an Open Letter on June 2, 2021 addressing ASAN.

The June 2, 2021 Open Letter made these important points:

  • We are currently watching many of the rising generation of promising leaders give up on “the autistic community” in despair.  
  • ASAN’s heavy-handed legalistic response [to Autistic, Typing] and insistence on not acknowledging the impact of their actions have upheld the historic silencing and devaluation of the work of BIPoC autistics.
  • ASAN’s staff and Board, especially its leadership, do not reflect the diversity of the community we seek to serve, particularly with regard to equitable and meaningful involvement of Black or Indigenous autistic people nor those with ID. As such, ASAN cannot adequately represent the whole community. Structural patterns systematically privilege some people over others.
  • Allegedly, one or more of ASAN’s white Board members have repeatedly engaged in racial and ableist microaggressions that silence autistic People of Color and autistic people with ID on the Board.
  • This has created a suboptimal Board culture for PoC and those with certain cognitive disabilities and has presumably driven ASAN Board members away.
    • There has been a mass departure of Board members within the last year.
    • Those who resigned included two Chairs, a Vice Chair, a former Vice Chair, and a Treasurer.
    • These individuals also represented a variety of marginalized identities, including but not limited to: queer, nonspeaking, people with ID, people with high support needs, parents, individuals with experience living in congregate care/institutions, gender minorities, Black heritage, and underrepresented geographic regions of the country.
  • ASAN has repeatedly failed to implement several solutions that have been suggested by autistic People of Color and autistic people with intellectual disabilities that could have helped to rectify these issues
  • 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.

Over two weeks have passed since the Open Letter was provided to the ASAN Board and Executive Director, but there has been no public nor private response to the authors of the Open Letter nor meaningful corrective action.

Furthermore, after the incident, ASAN elected Sarah Kapit to the Board, a white presenting person who had repeatedly publicly criticized both Autistic, Typing and the authors of the Open Letter. Ari Ne’eman was Chair of the Board Nominations Committee when this occurred, and continues to serve in that role despite protests. Here is a public protest by former Board Chair Cal Montgomery on June 16, 2021 to Sarah Kapit being elected to the board.

(Please note that the remainder of this memo was authored by all of its signatories.)

As a result of ASAN failing to respond to the Open Letter, a coalition composed predominantly (but not solely) of autistic BIPoC, including autistic people with intellectual disabilities, put forward this list of demands on June 20, 2021 with the intent to urge ASAN to implement critical changes in order to become the inclusive organization we believe that it aspires to be, especially with regard to autistics who have ID and are BIPoC, particularly individuals from Black and Indigenous communities.

List of Demands For the Autistic Self-Advocacy Network Board of Trustees and Executive Leadership: Issued June 17, 2021

1) ASAN’s Board needs to immediately and significantly revamp its processes with regard to how prospective Board members are currently handled.

  • The Board needs to form a Nominations Committee that is BIPoC led and that has meaningful representation/leadership from autistic BIPoC and people with intellectual disabilities.
  • The Board must critically evaluate the current nomination process to ensure more transparency and greater diversity of candidates.
    • Even if the process of nominating Board candidates remains an internal process that is not open to public and/or unsolicited applications, there should be an explicit written policy available to all Board members clarifying how nominations are made and handled.
    • A detailed written report must be provided to address the following:
      • Why didn‘t the Board put forward any of Black autistic people and autistic people with extensive work in intellectual disability suggested by Cal Montgomery as potential candidates before his departure?
      • Why has the current Chair of the Nominations Committee (Ari Ne’eman) repeatedly denied internal and external requests for transparency regarding nominations?
      • Who nominated which candidates, and how did they do so?
      • How did the committee determine the candidates that were selected for vetting? Who was involved in setting the criteria?
      • How vetting was conducted, and by whom? Records?
      • How was it decided which specific candidates would be presented to the full Board as prospective Board members?
      • Why did the committee proceed with approving new Board members prior to the recent open letter before bringing on new members?

2) ASAN needs to critically evaluate how its traditional ways of operating, culture, and practices function to preserve unjust hierarchies in the workplace.

  • ASAN must take immediate and concrete action to address key personnel issues to ensure more equitable representation, inclusive leadership, meaningful engagement, transparency, and effective communication.
  • ASAN must take immediate and concrete action to address key personnel issues to ensure more equitable representation, inclusive leadership, meaningful engagement, transparency, and effective communication.
    • ASAN must formally implement necessary changes to pay, promotions, and benefits structures to increase equitable practices and likelihood that BIPoC autistic people and autistic people with ID can apply.
    • ASAN must commit formally to a strategy to increase meaningful involvement of PoC ASAN staff in senior and executive positions, and appropriate recognition of POC ASAN staff who have contributed to community leadership outside of executive positions without equal pay or recognition.
    • ASAN must permit its staff to have a non-voting representative of their choosing on the Board other than the executive director.
    • ASAN must ensure that its staff have regular access to an impartial, external ombudsperson they can communicate with confidentially as needed with regard to grievances and other issues as per ASAN’s Employee Policies v. 1.7.
    • ASAN must formally commit to moving toward a disability justice-adjacent framework (i.e. DisCrit) with its staff and volunteers..
      • ASAN must collaborate with its employees in the development of a workplace bill of rights consistent with its expressed mission and position statements.
      • ASAN must provide its staff with culturally-sensitive training, support, and resources for crisis preparation and crisis leadership, particularly with regard to issues such as race and power dynamics. 
      • ASAN must bring in a social equity trainer to educate all staff on an ongoing basis.
      • ASAN must formally and promptly implement the racial “Diversity Equity and Inclusion” plan outlined by the external consultant.

3) ASAN needs to revise its bylaws and practices to clarify and strengthen the role of the Board.

  • Provide more clarity about how the Board is expected to operate (and provide training/support for the Board to be able to fulfill these responsibilities with reasonable accommodations).
    • Clarify where the Board has authority and oversight responsibilities vs. where staff (led by the Executive Director) have independence and discretion to run organization operations.
  • Update the Board Chair and Vice Chair roles.
  • Clarify role and structure of board committees.
  • Clarify term limits of three years and sunset current board members of longer than three years at the end of this year.
    • Exceptions to term limits can be made at the discretion of the Board (within reason) as needed to maintain Board operations. 
  • Commit to moving toward a disability justice-adjacent (i.e. DisCrit) framework in ASAN’s work.
    • Formally and promptly implement the racial “Diversity Equity and Inclusion” plan begun by the Board and outside consultant.
    • Commit formally to a strategy to increase meaningful involvement of PoC and people with ID on the Board.
    • Use an external facilitator/moderator for Board discussions involving sensitive topics (i.e. race).
    • Bring in a qualified social equity trainer to educate all Board members on an ongoing basis.  

4) ASAN needs to formally and transparently reassess the massive power imbalance between ASAN, an established and funded nonprofit led by people who are deservedly respected, and the unfunded and under-resourced advocates and activists within the community.

  • Implement a culturally-sensitive, community driven plan to improve ASAN’s 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.
    • This needs to be facilitated in centralized and community-wide manner, not just through ad hoc advisory committees.
    • ASAN needs to ensure that adequate financial and personnel resources are set aside to develop, launch, and improve upon this work and to sustain its existence over time.
    • Meaningful BIPoC leadership, coordination, and engagement should be central to this plan.
  • Support an independent investigation into concerns that Jae Casper Ross, a non-binary autistic advocate who died recently, alleged until their death that they had contributed to designing the symbol ASAN has used for years as one of its logos, yet never received public recognition for its creation.
  • Conduct exit interviews with former Board members.
    • This should include Cal Montgomery,  Morénike Giwa Onaiwu, Amy Sequenzia, Remi Yergeau, and Katie Miller.
  • Host a series of listening sessions to allow the community to express concerns, offer feedback, etc. in an effort to restore trust and demonstrate a commitment to making needed changes.

5) ASAN needs to publicly acknowledge how, in light of the aforementioned power dynamic, ASAN’s actions and policies for addressing criticism have at times created discord and caused harm, even if unintentionally.

  • ASAN’s heavy-handed legalistic response to Autistic, Typing and insistence on not acknowledging the impact of their actions have upheld the historic silencing and devaluation of the work of BIPoC autistics. This included ASAN dismissing social media criticism as inconsequential “drama,” including their crisis consultant telling ASAN to treat BIPoC autistic critics as just “trolls” with “nothing productive to say.”
    • A public statement of apology and atonement is needed for their response and the impact of it, including an acknowledgment of how systemic racism affects Indigenous autistic people.
      • This is not to suggest that ASAN nor frontline ASAN staff, contractors, and/or volunteers, including those who are BIPoC, should be expected to assume responsibility for intentional theft or plagiarism. 
      • It is a “red herring” for ASAN to imply that adopting a transformative justice approach to mitigate the insensitive manner in which this matter was initially handled would constitute an admission of guilt.
    • ASAN should use their platform to lift up Indigenous/Black autistic content creators, including those that spoke out about why ASAN’s actions were harmful. 
      • This could be a webinar, a guest post on their website, or another public offering. 

6) ASAN needs to publicly acknowledge that all of these demands are directed at current Board members and executive leadership, not at ASAN frontline staff.

  • In keeping with requirements and the spirit of whistleblower protections established by law, there must be no retaliation against current or former employees, board members, or volunteers regarding their perceived or actual contributions to this letter and list of demands.
  • We also support the formation of an internal BIPoC caucus/employee resource group which is able to meet confidentially/”closed-doors” and meets during paid work hours.
    •  This will provide BIPoC staff opportunities to connect across departments, share any concerns, and put forward any internal proposals to improve employee culture.
  • We also encourage the formation of additional caucus/resource groups, such as one for autistic people with intellectual disabilities, one for autistic parents, etc.  

We, as a collective, provide this set of demands in good faith, with the desire to see ASAN become more accountable to and representative of the entire autistic community. This goal is also in keeping with ASAN’s own vision, mission, and values. 

Comments can be left on this post. They will be reviewed and potentially published (unless otherwise requested).

—END—

When this memo was previously published, we unintentionally included with these demands two appendices alleging ethical misconduct by Ari Ne’eman.

As not every signatory on these demands was involved in creating those appendices and not every signatory can attest to their veracity, we wished to separate them as they had originally been (and were always supposed to remain) separate documents. 

The information that was previously in the appendices (alleging ethical misconduct) is available in a stand-alone post at the link below. Please note it is fully separate from the above demands:

Allegations of Ethical Misconduct made against Ari Ne’eman, June 17, 2021

3 thoughts on “Call for Solidarity with Autistic BIPoC and Autistic People with Intellectual Disabilities – Memo”

  1. I was badgered into an attempt to open a local ASAN chapter in a major metro area on the West Coast around 2010. I resigned for two reasons. One was that I was required to participate in an ASAN listserv that seemed to be dominated by some kind of toxic ableist dudebro culture that routinely put people down. They all piled onto someone who had accepted a scholarship based on “adversity” because that was politically incorrect–even though the student would need to drop out if they refused it. I had also received a (much smaller) adversity scholarship and was afraid they would find out and humiliate me too. The second reason was that they said we could not start scheduling meetings until we posted outreach flyers at all medical/therapy facilities in the metro area where Autistic people may be patients. When we pushed back that this was an unreasonable level of effort for volunteers in an area with a high density of medical facilities and autism-related clinics (easily hundreds), they accused us of not being inclusive. After I left, the other person gave up on forming a chapter.

  2. If ASAN is to help autistic people, it must recognize diversity in the community, and work against the same sort of top-down suppression present in so many organizations

  3. It is shameful the way we are as a community treated by those supossively are own, lease dont be silent any longer

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