Support > neutrality: a real-life case study (2022)


Image of a mouse upon an elephant's trunk, i spy anmilas dot com

This article pertains to a specific (past) situation that may or may not be familiar, or even relevant, to some readers who are viewing this. I do think the overall concept is of merit, which is why I will leave this up long after the matter has become “yesterday’s news.” I feel that it provides helpful info not just about the situation that occurred, but also about my values and the larger issue of how children’s important needs are literally subject to bureaucracy and the whims of adults who have more power than they.

So…diving into the metaphorical “deep end” below.

I shared some information on social media the other day (early February 2022) that I felt very strongly about at the time, but did not have a thorough understanding of. As a result, I (unintentionally) spread misinformation, and I don’t do that. That’s not who I am. So, less than 24 hours later, I am writing and sharing this because I need to 1) acknowledge and atone for my actions, and 2) “set the record straight” as best I can to try to mitigate any damage I have done. That’s the right thing to do, even if it’s an embarrassing thing to do, and I’m going to do it.

A day ago, I publicly criticized Autism Speaks (whom I will refer to using the acronym AS for brevity) and the Council for Autism Service Providers (whom I will refer to as CASP for brevity). Specifically, I accused them of “killing legislation intended to better support nonspeaking autistic students.” 

I have done some thorough research since I initially posted, and I have come to realize that my statement is only partially accurate. As such, I need to redact it. I don’t tell, and spread lies. That’s not me. (Despite the redaction, however, I want to emphasize that I do not approve one iota with the stance AS and CASP took on this bill.)

Writing all of this is time-consuming and mentally draining; drafting a detailed account of why I feel that Virginia House Bill 1047 should have been supported and passed will be even more so. As such, though I will (in a bit) share my take on the situation, I won’t be able to elaborate as much as is needed. I hope perhaps others will be able to “feel” where I’m coming from and fill in the gaps with a more well-crafted explanation. But whether they do or do not, again, I vehemently disapprove of what AS and CASP did in that committee meeting and feel that their approach did not prioritize the best interests of nonspeaking Virginia public school students in the present, including the constituent whose story inspired the bill and the many other children who were referenced in public comments.

Pausing (figuratively) everything for a moment to live by my principles. 

Just like I made my criticism publicly, I am apologizing publicly. Because apologies deserve to be “stand-alone”, I am placing it in its own article as opposed to within here, but you are welcome to review the hyperlinked apology above if desired.

(Additional thoughts/context overall.)

This bill had widespread support. Of the 45 combined written, in person, and virtual public comments that the committee received on this issue, 33 (from parents, AAC users, teachers, clinicians, educational organizations, etc.) were deeply in favor of this bill. Of the 12 comments that were not in favor, six of those were neutral/no official position on the bill. Only six out of all 45 expressed opposition, two of which are outside organizations who have no affiliation with the state of Virginia at all.

I have concerns about the way this situation was handled by the AS staff person (who is also Autism Speaks’ Director of State Government Affairs). This individual, who has a lengthy and noteworthy career in health policy and governmental relations (several years in cardiovascular and cancer organizations), has been with AS for a few months. She does not seem to have graduate education nor a professional background in law or special education, which is relevant to note here because her interpretation, as well as her framing, of this bill was at best misguided and inaccurate and at worst manipulative and misleading. 

Moreover, I DO NOT agree that wanting “tighter wording” is sufficient justification, and I also think that it was wrong to twist things by endorsing the notion that the bill violates IDEA when it does not. As mentioned in the meeting, HB 1047 “…does not circumvent the IEP process. It does not promote or mandate or prohibit a specific type of AAC assessment, device or method.” I am confused how Autism Speaks decided that the best course of action, rather than to pass the bill to protect these students’ rights, was to significantly slow the process of such a bill becoming legislation any time soon by withholding support of it unless the sponsor consents to “…clearly defining its language to ensure individualized, evidenced-based, AAC for nonverbal students in classrooms?” 

Furthermore, I don’t know why this AS representative didn’t try to work more closely with Senator Tran (who authored the bill), and/or any of the 32 additional parents, teachers, providers, etc. and/or the 36+ disability, education, and autism state and national organizations who openly supported this bill, to offer suggested wording that they would have been supportive of. Such a course of action shouldn’t have been too hard to coordinate; another organization did exactly that, which is why Senator Tran had to give the committee a substitution upon arrival as opposed to the original bill text.

“Wait a year or two or ten until you can come up with wording we like.” So…holding the children hostage in the meantime because it wasn’t specifically the wording they wanted? I don’t get how anyone thinks not passing this bill benefits those children. After all, this is the same organization whose primary argument for the autism insurance mandates they were aggressively pushing across all 50 states was the “urgency” of the matter (i.e., “My 1 in 88 can’t wait!”); now conveniently that urgency doesn’t apply anymore? Autism is so “urgent” that we must have XYZ type of intervention “now” and cannot wait, yet we can totally afford to wait when it comes to the students’ right to FAPE and/or their ability to communicate? That makes no sense at all.

All of this is even more disconcerting given the egregious record the state of Virginia has in terms of its blatantly racist and ableist practices toward disabled students of color. This is not a state whose public schools are “bending over backwards” to meet the needs of marginalized disabled students. Quite the contrary; they have been sanctioned by the Department of Education for their discriminatory practices. This is a persistent problem with a lengthy history…in a place that hosts one of the nation’s most notorious “school to prison” pipelines – despite the existence of IDEA, the ADA, and Section 504. Below are just a few articles about these pervasive issues.

(On a separate, but related note, it is also plain insulting that one of the rationale CASP gave for opposing this bill is, “This is an IEP issue, and parents can utilize due process.” Yeah…let’s not worry about it because we know how totally receptive public schools are when parents have to escalate a disability related issue. {Sarcasm.})

In closing, I acknowledge, and apologize for, how I have erred. But at this time, I’m more focused on what would have been the correct overall action with this bill. What would have been the outcome that was in the best interest of these students in their lives now. Not *maybe* in the next legislative session with the perfect wording – more than another full academic year lost for these children and their families who are at the mercy of a state notorious for its discriminatory practices to the point that it is literally the epitome of the school to prison pipeline. 

I think the ethical and compassionate thing to do would have been for everyone – those who purported themselves as “neutral” and those who indicated that they were “opposed” to the bill to take a completely different approach. I firmly believe that what should have happened that day is that all parties would have declared openly that they would support the bill as written, help get it passed during that legislative session, and then convene later to worry about wordsmithing. Doing so would not have violated IDEA nor the ADA nor Section 504; it would not have in any way circumvented the IEP process, and there is nothing in Virginia’s legislature that would have prevented a collaborative group from future efforts to amend the approved bill to offer any particular wording, specifications, clarifications, or whatever might be helpful to ensure that the students’ best interests were being prioritized.

Bishop Desmond Tutu shared some insightful thoughts years ago about some concerning aspects of neutrality.

Taking a “neutral” stance can be seen as the equivalent of powerful individuals “washing” one's hands to symbolically exonerate oneself of blame...theoretically adopting one stance while in reality sanctioning/perpetuating another seemingly without doing so “officially” or formally. But it's all a falsehood, for no amount of water or any other libation is sufficient to remove the stains from even the most manicured, bejeweled fingers. There isn’t enough water in all the world.

Recommended citation: Giwa Onaiwu, Morénike. (2022). Support > neutrality: a real-life case study. Just Being Me...Who Needs "Normalcy," Anyway? [Personal essay.]

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